tag:blogger.com,1999:blog-65862340763184381892024-03-13T03:33:50.815-07:0021 + 21 + 21 = ?I had a little baby. She has Down syndrome. We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay. Come meet the Babe.Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.comBlogger52125tag:blogger.com,1999:blog-6586234076318438189.post-70337834940148679682016-02-13T12:12:00.000-08:002016-02-27T10:44:35.799-08:00Pay here for inclusion IHi. I know. It's been a while and lots has happened (cough <a href="http://realsesmith.tumblr.com/post/135822630135/some-real-talk-about-the-mighty">The Mighty finally having to look at the shit job they've been doing</a>, cough, among other things), but I'm actually not here to address any of that. Plenty of folks have done such <a href="http://ollibean.com/2016/01/06/six-questions-before-publishing-about-children/">an amazing job</a> on many of the current topics that my half-assed is not needed at all. No way.<br />
<br />
I'm here to talk a little bit about inclusion.<br />
<br />
But not really about inclusion, not in the traditional way anyway.<br />
<br />
<a href="http://www.mcie.org/usermedia/application/6/inclusion_works_final.pdf">The research that supports meaningful inclusion</a> for all and <a href="http://www.inspireinclusion.com/wordpress/wp-content/uploads/articles/Does_self-contained_special_education_deliver_etc.pdf">rejects any self contained settings as inferior</a> and worse for all kids, <a href="http://www.swiftschools.org/shelf">is out there</a>. <a href="http://www.inspireinclusion.com/articles/">Plain as day</a>. And there's nothing that I can do, but support inclusion for all with all of my might. Because of my kid and her peers, the disabled, the gifted, the typically developing, the shy, the extroverted, the athletic, the polite, the artistic, the strange, the weird, the wonderful and the plain, the cute, all of them. All.<br />
<br />
But the general message of the importance and benefits of inclusion is not really what I'm about today. Although it always is.<br />
<br />
Today I need to say something about inclusion that keeps insidiously making it into a privilege, some sort of service that some are entitled to, invited in for, that's afforded to those who either qualify or whose parents have enough resources and reserves, mental and financial, to ensure it happens - both on paper and in reality.<br />
<br />
I need to tell you a story about a disagreement I had on the telephone today.<br />
<br />
The bridge-burner-never-talk-to-her-fucked-up-ass-again that I am, I still know a lot of folks. I do lots of things where I meet people who are themselves disabled or who have disabled children. Most of them I'm pretty in tune with and we are often passionate about the same things:<br />
<br />
Acceptance, meaningful inclusion, and equity.<br />
<br />
Oftentimes it can be defeating to have to realize in conversations how far there is to go, but mostly it's also really excellent and always reassures me that there are plenty of folks who'll have my kid's back and whose backs she'll have once she's a little older. Sometimes, we even start things. Good things that focus on elevating disabled voices and take the lead from disabled advocates.<br />
<br />
We're doing an inclusion 101 workshop for parents of very young children, so the kids can find community and the parents can learn about their kids' rights in the school system. Informal, nice, cool, networking, no one's left in the dark about ADA or IDEA, which we've unfortunately experienced is far too rampant, or hits you in the face like a brick on the eve of your kid's third birthday and sends you reeling. We will talk, answer some questions, and eat some cookies.<br />
<br />
Coooookiiies….<br />
<br />
Or so we thought.<br />
<br />
I reserved a room from the local library system and we set out to plan the invite flier and content of the workshop. So awesome, right? Connecting with likeminded parents and taking the "individual battle" down to a minimum with the backing of folks with a similar vision. This is NOT, after all, about fighting an individual battle, but working towards a system change, making a difference in lives besides the ones you meet at the breakfast table. Perfection, I'm telling you.<br />
<br />
We are reaching out. Because we have <i>precariously</i> connected with other parents and count ourselves lucky. We want to spread the camaraderie, maybe even to educators.<br />
<br />
Then the library got back to me:<br />
<br />
"Sorry, rooms at the library are limited to non-profit clubs and organizations"<br />
<br />
What? If someone's paying me for anything, I'm definitely not cashing the checks. I mean, I do fancy myself like a mix between a mean psychiatrist and a supportive life coach with a dash of a drunk pastry chef thrown in there, so there's that, but it's not exactly something I can be printing on business cards anytime soon. Not even if I'm willing to put things like 'Killer of your benign dreams, with chocolate' on it. I am so not employed. I <i>just</i> got my Green Card.<br />
<br />
"But you <i>are</i> a business," they said when I called them. The lady on the phone and the person who had vetted our reservation, whom I could hear in the background.<br />
<br />
"You are advocates for inclusion. That's a paid service. You <i>are</i> a business."<br />
<br />
What? What? What?<br />
<br />
"No. I'm not employed by anyone. I just want to talk to other parents about how to understand ADA and IDEA better, how to write their kids' IEPs in ways that support inclusion, how to collaborate with classroom and school staff, how to make it more likely for their kid to be accepted, truly included, and better supported in the actual community that they live in."<br />
<br />
"You're a business. Are you going to offer a free, introductory workshop and then contact people to offer your paid services?"<br />
<br />
"What paid services?"<br />
<br />
I don't even do laundry at my house. or bath time. I think a lot though, about several different issues and whatnot. Maybe someone wants to pay me for that?<br />
<br />
Big sigh.<br />
<br />
Could it be that inclusion as a civil right isn't really as clear as we think it is, or nearly as clear as we think it ought to be? Why would a public institution immediately jump to the conclusion that talking to people about how to have their disabled children better included in their neighborhood schools is a paid service? That being an advocate for inclusion is a job, not a passion, or part of a value system. That inclusion is something that is achieved through an excruciating process that involves hiring and paying people, not something that is the responsibility of the schools, the community at large, to ensure.<br />
<br />
What does that then say about the individuals who are not currently included in their schools, communities, or the society? Who we've chosen to not belong. That them or their parents aren't wealthy enough to pay for inclusion? That inclusion is a privilege reserved for those with the money and the resources?<br />
<br />
As it would turn out, there is an incredible amount of very sad truth in that last paragraph. And we don't confront, talk about, face, revisit or anything that nearly enough. We still continuously frame inclusion as something that disabled children must qualify for, be granted, or afford. We discuss ways of playing the system rather than changing it. And all to often we accept segregation as inclusion. <br />
<br />
Even the librarian "knew" that.<br />
<br />
<br />Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com0tag:blogger.com,1999:blog-6586234076318438189.post-54201294424226206022015-05-13T20:16:00.000-07:002015-05-13T20:16:59.551-07:00On PKN and "disability awareness" (Or: Just say no to awareness.)<div>
Pertti Kurikan Nimipäivät, or as they are internationally known, PKN, will be <a href="http://www.eurovision.tv/page/history/year/participant-profile/?song=32863">representing Finland</a> in the upcoming Eurovision song contest. The contest is a big deal (alright, for Europeans such as me) and the fact that all of the members of PKN have an intellectual or a developmental disability is too. </div>
<div>
<br /></div>
<div>
A big fucking deal. Totally. No doubt. PKN was chosen to represent Finland by popular vote. And this was no pity vote either. These guys fucking kick ass. </div>
<div>
<br /></div>
<div>
In the nail-on-the-head words by PKN [my translation]:<br />
<br />
<i><a href="http://kovasikajuttu.fi/en/about-the-band/lyrics">Päättäjät sulkevat ihmiset suljettuihin huoneisiin</a></i><br />
<i><a href="http://kovasikajuttu.fi/en/about-the-band/lyrics">Mutta me ei haluta olla niissä huoneissa niin</a></i><br />
<i><a href="http://kovasikajuttu.fi/en/about-the-band/lyrics">Kukaan ei huolehdi meistä, ei tuu edes niihin huoneisiin katsomaan</a></i><br />
<i><a href="http://kovasikajuttu.fi/en/about-the-band/lyrics">Miten meidän orpojen niissä huoneissa käy?</a></i><br />
<i><a href="http://kovasikajuttu.fi/en/about-the-band/lyrics"><br /></a></i>
<i><a href="http://kovasikajuttu.fi/en/about-the-band/lyrics">CH: Päättäjä on pettäjä</a></i><br />
<i><a href="http://kovasikajuttu.fi/en/about-the-band/lyrics">Pettäjä on päättäjä</a></i><br />
<i><a href="http://kovasikajuttu.fi/en/about-the-band/lyrics">Kun ei meistä kehareista</a></i><br />
<i><a href="http://kovasikajuttu.fi/en/about-the-band/lyrics">tippaakaan välitä</a></i><br />
<br />
<i>Those in authority lock people up in locked rooms</i></div>
<div>
<i>But we don't want to be in those rooms so</i><br />
<i>No one looks after us, doesn't even come into the rooms to see</i><br />
<i>What happens to us orphans in those rooms? </i><br />
<i><br /></i>
<i>CH: Those in authority deceive</i><br />
<i>Those who deceive are in authority</i><br />
<i>When they don't care about us intellectually impaired at all </i><br />
<br />
This is not awareness. Not a chance. This (and most of their other work as well) is revolt. This is fighting oppression through art. This is being angry at a society that excludes. This is mayhem in the service of a greater good. This is protest.</div>
<div>
<br />
PROTEST.<br />
<br />
NOT fucking <i>awareness</i>.<br />
<br />
We must listen to the message, <i>not</i> try to make the messengers fit our agenda.<br />
<br /></div>
Really, if we take this act of assertion and let it become about awareness (as in: Hey, a man with Down syndrome plays drums just fine and is playing at an international song contest. Busting expectations there, buddy!), we're squishing ALL of the delicious juice straight into the trash and offering the world the driest, most inoffensive part of it all - <br />
<br />
"Disability awareness"<br />
<br />
SCREAM!<br />
<br />
Seriously, and I don't know these guys personally and have never even met them in real life and have only followed them since they emerged on the scene of 'what we Finns like to be proud of i.e. the education, prison system, lakes and forests, being honestly strange, and Pertti Kurikan Nimipäivät and their no fucking apologies tack' so I'm only assuming when I say that I really don't think PKN has 'inoffensive' as something they'd like to be.<br />
<br />
Just guessing, but yeah. A pretty good guess, right? <br />
<br />
So let's just nip this whole awareness bullshit in the bud and respect the band and the guys in it for what and who they are.<br />
<br />
PUNK that FIGHTS THE SYSTEM.<br />
<br />
<div style="text-align: center;">
[video of PKN performing I hate the world at a festival]</div>
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Free our people. </div>
Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com1tag:blogger.com,1999:blog-6586234076318438189.post-81378294360840723482015-05-09T10:38:00.000-07:002015-05-09T10:56:21.728-07:00Why I'm not in love with The MightyI have been getting an ad pushed into my Facebook feed a lot lately. That ad has been telling me that I "don't have to face a diagnosis alone." That ad is for <a href="http://themighty.com/">The Mighty</a>, a new-ish, fast-growing, and highly professionally built website.<br />
<br />
Now, you might wonder, as I did, what my diagnosis would be. The closest I've come to a doctor in the past three years is trying to convince the US government that they should let me stay by getting a few vaccine boosters. I swear. So, as you might have guessed, The Mighty is not actually referring to my diagnosis (seeing as I have none), they're referring to my kid's diagnosis of Trisomy 21, Down syndrome.<br />
<br />
Ah, of course this is about my kid, a minor, not me, a consenting adult.<br />
<br />
This is about my family - my husband and I - and how we must struggle because the person who started The Mighty did:<br />
<br />
<a href="http://themighty.com/2014/04/why-we-created-the-mighty/">"Lying in bed that night we were shaken and lost. This was not the life or family we had planned. I remember feeling small and hollow, a powerless husband and father. Whether it was a futile attempt to comfort my wife or a way for me to make sense of it all, I told her that we were going to do something good with this. How, she asked. I had no idea. We were in tears."</a><br />
<br />
It is clear that there are no evil intentions behind The Mighty, just an attempt to make sense of a very personal situation, of one person's circumstance. However, should that mean that a powerhouse should be beyond criticism, because the intentions are benign and in accordance with one person's understanding of "doing something good" with a situation they didn't want to find themselves in? I don't think so. Of course not.<br />
<br />
What does The Mighty aspire to? They write that they <a href="http://themighty.com/who-we-are/">"...joined forces to build The Mighty because we all believed that a media company could be more than a business. At its best, it could actually help people."</a><br />
<br />
Noble, you might think. Seems like something that could be good, right? But what does "helping people" entail in the world of disability? Who do they want to "help" and how? Why are they telling me that they don't think I should "face a diagnosis alone?"<br />
<br />
Who is The Mighty for? When do we cross the line to inspiration porn aimed at the non-disabled, non-marginalized audience? Is it okay, as a non-disabled person, to want to feature<br />
<br />
<a href="http://themighty.com/2014/04/why-we-created-the-mighty/">"Stories that inspire people – that can change the path of someone’s day, as my wife says – are a great start, but we are going after much more. Ultimately we want to improve the lives of people facing disease, disorder and disability."</a><br />
<br />
Where are disability pride, disability culture, and creation of new value in "facing disease, disorder and disability?" Where is empowerment in "improve?"<br />
<br />
They're not there.<br />
<br />
As far as changing the path of someone's day, that happens to me most every time I come across an article, especially about Down syndrome, being featured on The Mighty. I come away from the encounter a little more defeated and angered, and feeling like I continue to bang my head against an ableist wall of inspiration. But that's just me.<br />
<br />
Come on, the site's harmless and at least it's not disparaging and filled with hate (unlike you), you might be thinking, but hopefully aren't.<br />
<br />
Is it though? Is it harmless to keep the grief narrative alive and well and more powerful than ever? Is it harmless to center the parents, the family, as opposed to the disabled person themselves? Is it really harmless to tell a new parent trying to suss out whether they're truly grieving a diagnosis or simply concerned about how their kid will fare in the world that is not designed for someone not considered typically developing, that it's okay to cry and grieve the "child they lost" and to let no one tell them they shouldn't? Not harmless in my book. Seems rather damaging for a kid who is everything but "lost."<br />
<br />
Is this a site for suddenly disabled adults looking for community and "facing a diagnosis?" Doesn't seem like it. The majority of the articles featured seem to be written by parents of differently disabled children. To The Mighty's credit, however, I feel I must mention that there are articles written by disabled adults. They do exist on the site, they do. They are not the majority, and I'm not often sure what their purpose is, but they're there. So who is the site for then? By the looks of it, it is targeted to the non-disabled parents of newly born disabled or newly diagnosed children.<br />
<br />
So. This is not a site <i>for</i> or <i>by</i> disabled people. This is a site <i>about</i> disabled people. About someone other than themselves coming to terms with their diagnosis, or sometimes seems like, their existence.<br />
<br />
The Mighty could be so good, so empowering. There are inklings of this. I hope they refocus and redefine. I hope they become less satisfied with themselves and their general crowd appeal of feel-good and glossy, and truly help create something new.<br />
<br />
<i>With</i>, not <i>about</i>.<br />
<br />
I don't ask for much, but I do ask this: Do not pull the rug from under my kid's (or her peeps') feet. Just don't. There is no grace, love, or acceptance in something that ultimately hurts her.<br />
<br />
As long as we keep centering the parents, the families, regardless of how good our intentions are, we are not creating strong advocates with their own strong voices, and their allies. The disabled voices remain erased, no longer buried in institutions but nonetheless largely drowned out by those who mean well. <br />
<br />
We can do better. I know we can.<br />
<br />
<div style="text-align: center;">
[A photo of the back of a blond child's head with slightly blurred metal chains in front of the child] </div>
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Free our people. </div>
Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com15tag:blogger.com,1999:blog-6586234076318438189.post-72213260491037522222014-05-24T21:47:00.000-07:002014-05-24T23:08:42.626-07:00Birds and why they're sometimes flippedBegin </sarcasmfont><br />
<br />
Every once in a while I get lulled into this state in which I believe that only the truly bad and disgusting people in the world will be unable to perceive of my kid as her own unique self and will just see Down syndrome. This is a blissful state. Good, nice and respectful people are easy to like and get along with, and evil people are easy to hate and yell at. These villains are easy to identify and dismiss, what with the tentacles, overt candy-stealing habits, and the Mr. Burns fingertip-tent. And then there's the cackle. The cackle is a dead giveaway.<br />
<br />
Boo!<br />
<br />
I love the above state. That state is easy. It's nice. And it really does make sense, based on all of the things us humans do for and say about our fellow humans, to believe that this is the state that we're comfortably in, as a society. With all of the religions and philosophies so popular in today's world (by which I mean based on the crowdedness of my Facebook feed with cat-photos, inspirational memes, and bible verses), it makes sense to think that most people wouldn't want to intentionally tread on the fragile lives of others. Right?<br />
<br />
TinyFurryKittens, Mahatma Gandhi, and Jesus and fam all tell us not to.<br />
<br />
Lull. Blissful lull, I tell ya. <br />
<br />
Then something happens.<br />
<br />
Someone, let's say a school district, who is supposed to be an ally to their students, those with disabilities and those without, not only stumbles and falls, but thinks they're not falling nor stumbling. Wait, they're perfectly upright! Yey! They're firmly perched on where they need to be. For them it's perfectly okay to be looking down on this poor kid who has had this <i>horrible</i>, oh so <i>terrible</i> tragedy happen to her in the form of being born with 47 chromosomes in her cells.<br />
<br />
<i>Oh the horror of a genetic variant. </i><br />
<i><br /></i>
<i>Whoopsies, I mean MONSTER, of course. </i><br />
<i><br /></i>
<i>Or, actually, no. Aren't they supposed to be happy all the time?</i><br />
<br />
Poor defective kid, her. Poor, poor child. Let's make sure she has at least <i>some</i> modicum of life. Let's <i>help</i> her, let's give her the tools to be able to live in her parents' modified basement, under constant monitoring, while she stays a child, for forever. Screw her future hopes and dreams and aspirations, she <i>needs</i> to be working on her IEP goals to ever be able to <i>live.</i> Seems they're thinking. <br />
<br />
"She has an actual <i>medical</i> diagnosis. Causing <i>significant</i> delays," someone says and looks pityingly at this kid who is doing her all to ingeniously escape from her mom's clutches because it's a boring meeting and, well, there's bound to be a tinytot-sized way out of this place. There always is, for a persistent, inventive child.<br />
<br />
But.<br />
<br />
A specter of a Down syndrome past has entered the meeting room before the person with Down syndrome and the school district's not really interested in shifting its gaze. They're too busy staring at this abomination of a <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2014/03/prenatal-testing-and-debilitating.html">debilitating condition</a>.<br />
<br />
Down syndrome and inventiveness are not comorbid, Down syndrome and segregated for one's own good are. <br />
<br />
Duh.<br />
<br />
The self-contained classroom "might not be the least restrictive environment, but it might be the environment where we can meet her needs best," that someone continues with in an impending violation of Individuals with Disabilities Education Act. Through him, the school district lays it out.<br />
<br />
No one has evaluated the kid in any way yet. This is the first time anyone from the district lays eyes on her. What they have is paperwork with her "actual <i>medical</i> diagnosis" on it, which according to them seems to mean that an inclusive preschool program is likely beyond her. This "actual medical diagnosis" also means that she will have to be evaluated by the school nurse, among others, because, obviously, OBVIOUSLY, Down syndrome is the same as ill health. Period.<br />
<br />
Well, maybe the school nurse can diagnose a hole in her heart that specialists with ultrasounds and echocardiograms couldn't. Could happen, right? After all, Down syndrome is what killed Ethan Saylor too.<br />
<br />
End </sarcasmfont><br />
<br />
My blissful lull is blown to smithereens. By someone who doesn't have a single tentacle and doesn't even cackle.<br />
<br />
A person who means well says "they will be able to spend some time in the inclusive classroom too."<br />
<br />
My kid is left at the very far margin of what it means to be a student, a participant, an agent, a person with an undefined future. By virtue of her chromosomes she has become someone who needs, an eternal recipient, a burden on the system. Someone to be rescued, aided, and helped.<br />
<br />
Never an equal, always a case.<br />
<br />
Thanks a bunch. Yeah.<br />
<br />
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<br />Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com2tag:blogger.com,1999:blog-6586234076318438189.post-71931638713103831212014-03-27T19:13:00.000-07:002014-03-27T19:13:06.753-07:00A few thoughts on the DS-Connect registry.There is a <a href="https://dsconnect.nih.gov/">government registry</a> of people with Down syndrome that purports to provide "an important resource to individuals with Down syndrome and their families," and to link "those seeking volunteers for their research studies with those who most stand to benefit from the research."<br />
<br />
"Wow, great!" you might think, "What research?"<br />
<br />
Well. At first glance the "<a href="https://dsconnect.nih.gov/en/news/416-sample-news-item-2.html">Goals of NICHD Research on Down syndrome</a>" seem to have some reasonable, important points: such as research into leukemia and heart disease as well as assessing real world access to healthcare. Incredibly important stuff, that. But.<br />
<br />
But:<br />
<ul style="background-color: white; border: 0px; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif !important; font-size: 14px; line-height: 22px; list-style: none; margin: 15px 0px; outline: 0px; padding: 0px; vertical-align: top;">
<li style="background-image: url(https://dsconnect.nih.gov/templates/ja_kyanite_ii/images/bullet.gif); background-position: 20px 7px; background-repeat: no-repeat no-repeat; border: 0px; margin: 0px 0px 5px; outline: 0px; overflow: hidden; padding: 0px 0px 0px 30px; vertical-align: top;"><a href="https://dsconnect.nih.gov/en/news/416-sample-news-item-2.html"><strong style="background-color: transparent; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: top;">Causes, pathophysiology, and disease progression</strong>. Topics include aging and Down syndrome, the effect of cellular and molecular processes on symptoms, and cognitive functioning in model mice.</a></li>
<li style="background-image: url(https://dsconnect.nih.gov/templates/ja_kyanite_ii/images/bullet.gif); background-position: 20px 7px; background-repeat: no-repeat no-repeat; border: 0px; margin: 0px 0px 5px; outline: 0px; overflow: hidden; padding: 0px 0px 0px 30px; vertical-align: top;"><a href="https://dsconnect.nih.gov/en/news/416-sample-news-item-2.html"><strong style="background-color: transparent; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: top;">Diagnosis, screening, and functional measures</strong>. Goals in this area include improved characterization of Down syndrome phenotypes, investigation of measures of cognitive function throughout the lifespan, and better linkage between human and mouse studies.</a></li>
<li style="background-image: url(https://dsconnect.nih.gov/templates/ja_kyanite_ii/images/bullet.gif); background-position: 20px 7px; background-repeat: no-repeat no-repeat; border: 0px; margin: 0px 0px 5px; outline: 0px; overflow: hidden; padding: 0px 0px 0px 30px; vertical-align: top;"><a href="https://dsconnect.nih.gov/en/news/416-sample-news-item-2.html"><strong style="background-color: transparent; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: top;">Treatment</strong>. This topic area includes testing orphan drugs, measuring the impact of early intervention on cognitive development, and using Alzheimer's disease research to inform potential therapeutics.</a></li>
<li style="background-image: url(https://dsconnect.nih.gov/templates/ja_kyanite_ii/images/bullet.gif); background-position: 20px 7px; background-repeat: no-repeat no-repeat; border: 0px; margin: 0px 0px 5px; outline: 0px; overflow: hidden; padding: 0px 0px 0px 30px; vertical-align: top;"><a href="https://dsconnect.nih.gov/en/news/416-sample-news-item-2.html"><strong style="background-color: transparent; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: top;">Comorbid medical and psychiatric conditions</strong>. Research explores treatment and management of such conditions as leukemia, congenital heart disease, and dementia.</a></li>
<li style="background-image: url(https://dsconnect.nih.gov/templates/ja_kyanite_ii/images/bullet.gif); background-position: 20px 7px; background-repeat: no-repeat no-repeat; border: 0px; margin: 0px 0px 5px; outline: 0px; overflow: hidden; padding: 0px 0px 0px 30px; vertical-align: top;"><a href="https://dsconnect.nih.gov/en/news/416-sample-news-item-2.html"><strong style="background-color: transparent; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: top;">Living with Down syndrome</strong>. Studies cover a broad range of issues, such as tracking real-world outcomes for families living with Down syndrome, health disparities in access to care, and interventions for transitional stages.</a></li>
<li style="background-image: url(https://dsconnect.nih.gov/templates/ja_kyanite_ii/images/bullet.gif); background-position: 20px 7px; background-repeat: no-repeat no-repeat; border: 0px; margin: 0px 0px 5px; outline: 0px; overflow: hidden; padding: 0px 0px 0px 30px; vertical-align: top;"><a href="https://dsconnect.nih.gov/en/news/416-sample-news-item-2.html"><strong style="background-color: transparent; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: top;">Research infrastructure</strong>. Efforts include promoting the inclusion of people with Down syndrome in a range of NIH-sponsored clinical trials, building tissue and brain banks, and improving availability of animal models.</a></li>
</ul>
<br />
Even without picking apart the language as I'm wont to do and as is sorely needed in this textbook medical-model document, what is it that's really there? How many of these points center on something relating to cognitive function, or cognitive development?<br />
<br />
From this document it emerges that there is no difference, diversity, or divergence in cognition, just cognition that is<i> </i>the issue in Down syndrome. Which <b>is</b> Down syndrome, while other stuff is co-morbid. Much effort and much emphasis is on research to do with affecting cognition or its development.<br />
<br />
Here are a few examples of what's made it into mainstream and professional media about the current research efforts and Down syndrome (that isn't about prenatal detection of Ds):<br />
<br />
<a href="http://www.bloomberg.com/news/2014-03-03/iq-boosting-drugs-aim-to-help-down-syndrome-kids-learn.html">IQ-Boosting Drugs Aim to Help Down Syndrome Kids Learn</a><br />
<br />
<a href="http://www.sciencemagazinedigital.org/sciencemagazine/28_february_2014?pg=25#pg24">Can Down Syndrome Be Treated?</a><br />
<br />
<a href="http://online.wsj.com/news/articles/SB10001424052702304250204579431193819412078?mg=reno64-wsj&url=http%3A%2F%2Fonline.wsj.com%2Farticle%2FSB10001424052702304250204579431193819412078.html">People With Intellectual Disabilities Get a Say in Drug Trials</a><br />
<br />
<a href="http://www.scientificamerican.com/article/new-drugs-may-transform-downs-syndrome/">New Drugs May Transform Down Syndrome</a><br />
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<a href="http://www.nytimes.com/2011/07/31/magazine/a-fathers-search-for-a-drug-for-down-syndrome.html?pagewanted=all&_r=0">A Drug for Down Syndrome</a><br />
<br />
Yet, often the registry is <i>sold -</i> meaning that enrolling a child, or a dependent (I assume no effort has been made to make the process accessible for people with Down syndrome themselves, or at least I couldn't locate an accessible enrollment process on the site?) is strongly encouraged with talk of "improving" a person's quality of life - with research on Alzheimer's and dementia, heart defects, and leukemia, which are often issues that literally do diminish one's quality of life, unlike intellectual disability.<br />
<br />
We all know that talk of cognitive research is a mine field still.<br />
<br />
On one end of the continuum of thoughts on this debate, there are people who cannot understand why someone wouldn't want to have as 'typically developing', 'independent' and sometimes even as 'socially acceptable' a child as possible if they had the chance, and on the other end there are those who believe that their children are exactly who they were meant to be and wouldn't imagine doing anything that might alter what they understand as their kids' 'essence' in any way.<br />
<br />
But it's not only about what the parents say and most definitely shouldn't be, perhaps at all (another post, on guardianship, coming soon). There are people with Down syndrome who say that they are proud of who they are just the way that they are and regardless of their perceived intellectual disability wouldn't want to change their cognition, and there are other people with Down syndrome who would like help in making their <a href="http://online.wsj.com/news/articles/SB10001424052702304250204579431193819412078?mg=reno64-wsj&url=http%3A%2F%2Fonline.wsj.com%2Farticle%2FSB10001424052702304250204579431193819412078.html">"brain better</a>" (at least in the studies in this link, there's emphasis on listening to the actual participants and making sure they want to participate, and that they understand what they're participating in and why.)<br />
<br />
The DS-Connect registry is sponsored by National Institutes of Health (NIH) which state that "<a href="https://dsconnect.nih.gov/en/about-ds-connect/faq.html#6">In developing DS-Connect™, the NIH listened to information and expertise provided by <b>families of</b> people with Down syndrome, <b>researchers</b> who study Down syndrome, and <b>other members of the public</b></a>" (My emphasis).<br />
<br />
If I had a genetic condition someone was creating a registry about, I'd want to have been offered the chance to be heard, not just those around me. But that's just me, I like to have a say in matters that directly affect me.<br />
<br />
I can only speak for myself, and only hypothetically, since I don't actually have Down syndrome, or another genetic condition that there is a research registry about. But I do know that I wouldn't want to change <i>my</i> cognition. I like my cognition fine the way it is and yet basic math overwhelms me, something I don't mind especially or would want to change. Why would I? My inability to do basic math has worked and still constantly works to steer me to humanities. Something I wouldn't change for the world. It also allows for me to delegate every single task in our household involving calculations to my husband, and leaves waiters loving me when I accidentally tip them 60% if I don't use an app to calculate the tip.<br />
<br />
Maybe I would feel differently if the world kept telling me that there was something wrong with my cognition, instead of helping me out when numbers overwhelm me? But wouldn't that mean that I should be getting angry at the world for telling me such lies instead of trying to make myself more tolerable to others, or instead of wanting to provide brain tissue samples so that researchers could study my difficulties with fractions in hopes of<i> </i>treating them?<br />
<br />
Where do we draw the line between medical and social?<br />
<br />
I don't know if my child would or will consent to being part of the DS-Connect registry, and I can't know whether the data I might be able to view would be data collected after consensual participation by the person with Down syndrome. So that I, as a parent not involved in any kind of research, can view "<a href="http://theunknowncontributor.com/blog/2014/03/26/are-you-ds-connect-ed/#.UzRdY1zLgTs">similarities</a>"?<br />
<br />
This should not be a debate or a discussion of whether Down syndrome should or can be "treated" and whether that's something one supports as a course of action, this should be a discussion on what makes us think and believe that intellectual disability (so not leukemia, not heart defects, not celiac disease, not hypothyroidism) is a <i>pathology</i> that consists of impairments that should be done away with with different kinds of chemical and physical interventions to the greatest possible extent, instead of accommodating for differences in cognition, ability, and memory.<br />
<br />
If we call them challenges, the narrative of overcoming is sure to tag along.<br />
<br />
I'm not willing to compromise the kind of world we live in. I'm not willing to say "I'll take the trickle of good research efforts focusing on actual medical issues with the river of what is sold as suffering from mental deficits and lack of independence." I'm not willing to set aside my disgust at the rhetoric of "treating Down syndrome" and "improving" those with memory and cognitive <i>deficits</i> for what, if anything, might emerge about treating childhood leukemia, sleep apnea, or congenital heart defects.<br />
<br />
Research efforts don't take place in a vacuum. They help shape people's perceptions, especially when they make the news. If we keep telling the world that we welcome "medical solutions" to this "problem of cognitive deficits" what are we really doing to people with Down syndrome? To acceptance? To inclusion? To equality? To civil rights and liberties?<br />
<br />
What the research can all too easily imply and promote is that intellectual disability is a "medical problem" in need of a "fix", "treatment" or a "cure" instead of the result of a society that considers intellect, and alongside it a specific kind of independence, as inherently valuable as well as a necessity, with that specific kind of independence as proof thereof, for something like "adequate survival" in life. This is something that we need to think about, consider, and discuss. We need for people with Down syndrome to take the lead.<br />
<br />
What exactly are we putting out there about Down syndrome, and about <i>people</i> with Down syndrome?<br />
<br />
Maybe I am throwing the baby out with the bathwater and being unfair to my own child. That's a thought I'm definitely considering constantly as I muddle along on this path of parenthood. I want to look at this, as I do most things, from all angles, and I want to do right by my kid and others with Down syndrome. There's also the chance that I'm telling the world that "<a href="http://theunknowncontributor.com/blog/2014/03/26/are-you-ds-connect-ed/#.UzRdY1zLgTs">people with Ds count, and that we want more for them</a>," by not buckling under the pressure to sign someone other than myself, who really should have her own say about this once she's able, up for something that just might end up reinforcing perceptions of her as a lesser being who should be treated, fixed, and improved or at least mitigated as soon as possible. <br />
<br />
I'm not inciting a revolt against the registry, I'm simply telling you why I personally find it difficult to jump in head first, especially since I don't have my daughter's guidance on this just yet, into those murky waters that end up splashing all over mainstream news and thus greatly shape thinking and eventually the way that people with Down syndrome will be viewed in society, professionals and researchers included, and why I think the entire foundation of the registry, the process as well as the forces that brought it about need much further consideration. I am outlining my concerns <a href="http://theunknowncontributor.com/blog/2014/03/26/are-you-ds-connect-ed/#.UzRdY1zLgTs">in response to the, frankly rather ridiculing assumption that I'm either "overwhelmed" by paperwork, or that I find the registry "creepy" or "complicated" in some Big Pharma conspiracy-theory way</a>, since I haven't signed my kid up yet.<br />
<br />
I'm not denouncing the registry entirely either, I simply think that instead of our gushing support and guilting rhetoric to round up participants, it would be nice to see pressure placed on those <a href="http://downsyndrome.nih.gov/about/Pages/default.aspx">consortium members</a> who are, after all, the representatives of those at the center of this, individuals with Down syndrome. For them to keep listening to those they represent, and to actively constantly assess whether what's happening is in their representees' best interest, and how it will influence all areas of their everyday existence in society.<br />
<br />
That's not something I've witnessed at this point. I sincerely hope I just haven't been looking hard enough. <br />
<br />
Checks and balances aren't in place with the registry just yet. Fundamental concerns remain largely unaddressed. Certain efforts seem misplaced and misguided. I'd like to see more discussion about the basics, about the directions of research, about consent and need. About agency and voice. About <i>people</i> with Down syndrome, <i>not</i> about "<a href="https://dsconnect.nih.gov/en/news/416-sample-news-item-2.html">families living with Down syndrome</a>."<br />
<br />
Here's a story you might find interesting (by which I mean horrifying): <a href="http://america.aljazeera.com/watch/shows/america-tonight/articles/2014/3/24/forced-sterilizationnurseicanseenowthatitwassowrong.html">Forced sterilizations of "feebleminded" people were carried out in the US in hopes of eradicating said "feeblemindedness" and creating a kind of a super race. A public policy that was cited by Nazi doctors, in their defense, during the Nuremberg trials.</a><br />
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Are we still hung up on a super race, a member of which never needs assistance with anything? Just not actually using the words <i>super</i> or <i>race</i>, but <i>independence</i>, <i>intellect</i>, and <i>productivity</i> instead? Where does medical stop and social begin and vice versa?Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com1tag:blogger.com,1999:blog-6586234076318438189.post-49587853545436986122014-03-21T03:21:00.000-07:002014-03-21T03:21:00.336-07:00#WDSD14Today is World Down Syndrome Day.<br />
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Today is not about creating or spreading awareness (FYI, <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2013/10/when-we-slip-and-slide-lament.html">not really about awareness, like, ever</a>, yo), not even really about acceptance (although every single day should be about active acceptance, so there's that. Heh).<br />
<br />
Today is about <b>celebration</b>, about <b>pride</b>, about <b>culture</b>, about <b>rights</b>.<br />
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About the kind of celebration of difference that doesn't try to see past or beyond the disability by ignoring it completely or by only searching for similarities, but the kind that views it as an accepted part, sometimes a defining one if the disabled person so chooses herself, of a person. The kind of celebration that acknowledges and respects a disability, like it acknowledges and respects someone's race, sexual orientation, and chosen gender. The kind of celebration that embraces how a person chooses to define herself.<br />
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A celebration of taking <b>PRIDE</b> in one's self. All of one's self.<br />
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Today is not about how regular we all are - and we are, most of us anyway, I and my daughter included - but about enjoying life, and having access to learning and community. What these self advocates speak of in this clip:<br />
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<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/SRTwSsOT114" width="480"></iframe>
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<br />
Today is about access to healthcare and not having one's health concerns brushed aside with "We often see this in Down syndrome." What this clip speaks of:<br />
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<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/pRuYAB5fxPw" width="480"></iframe>
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<br />
Today is not about my kid being the best advocate for acceptance, meaningful inclusion, and equality for people with Down syndrome just by living her life or some such esoteric babble (Another FYI, it never is, she's not your campaign until, if ever, she wants to be), or about us as "a family affected by Down syndrome" (Yup, you guessed it: <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2014/01/what-will-you-teach-your-child.html">never is</a>), or how our life looks or is, or, deep sigh, about <a href="http://jezebel.com/this-ad-for-world-down-syndrome-day-is-making-me-ugly-c-1543911733/+morninggloria">"advertising" for Down syndrome</a> to stall abortions or something, another deep sigh. Nope. <br />
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Today, or any day really but you know what I mean, is about recognizing, talking about, accepting, celebrating, and accommodating for Down syndrome. Today is about <i>people</i> with Down syndrome.<br />
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"I have Down syndrome, and I am proud of who I am," say the self advocates on the first clip. Not a single eyebrow should be raised, not a single scoff heard. This should not be, and isn't, a radical idea.<br />
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I want my daughter to be able to say "I'm proud to have Down syndrome." <br />
<br />
That's what World Down Syndrome Day is about.<br />
<br />
Mother Nature thinks so too and gives Down syndrome two thumbs up:<br />
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<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/o0VV3C_ydak" width="480"></iframe>
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<br />
One final thought, because it's eating me up. <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2013/03/natural.html">The same one I had last year</a> also so maybe I should scream it today?<br />
<br />
WHAT DO <a href="http://www.worlddownsyndromeday.org/lots-of-socks">FUNKY SOCKS</a> HAVE TO DO WITH DOWN SYNDROME? WHAT? WHAT IN THE...? WHY...? Can we have a reasonable explanation, and can someone reassure me that regardless of all evidence, associating strange socks with Down syndrome isn't counterproductive to acceptance after all, please? And why does supporting this absolute incongruence seem to cost money? Anyone? No, really, ANYONE?<br />
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Thought so.<br />
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I'll see your socks and raise you pride. For free. How's that for a good start to a celebration?Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com3tag:blogger.com,1999:blog-6586234076318438189.post-81660166620439650122014-03-06T22:11:00.000-08:002014-03-06T22:35:13.256-08:00Prenatal testing and "debilitating" disabilitiesWhen William Saletan writes about abortion, reproductive rights, and the political right in these words:<br />
<br />
<a href="http://www.slate.com/blogs/saletan/2014/02/25/_after_birth_abortion_how_right_wing_web_sites_turned_my_old_article_into.html">"<span style="background-color: white; color: #281b21; font-family: sl-ApresRegular; font-size: 15px; line-height: 1.8;">So I cling to the mushy, unprincipled belief that while there ought to be fewer abortion decisions—and there would be, if pro-lifers would magically redirect their energy from abortion bans to birth control—when those decisions arise, they’re best made by the people directly involved."</span></a><br />
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I can't but agree wholeheartedly. There isn't much I'm going to say about abortion in this post.<br />
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Because aborting fetuses with Down syndrome is <i>not</i> about abortion, not about whether it should be legal, how far into the pregnancy it should be legal, whether it should be allowed especially or denied especially because of the fetus having Trisomy 21.<br />
<br />
Eugenics is <i>not</i> about abortion. Attacking abortion will simply lead us astray, lead us to ignoring the reality in play and the real, actual people who are already here. Abortion is simply a (legal) means for a eugenicist mindset. Targeting the means might feel appropriate to many, especially to those who feel abortion in general is wrong, but that won't allow us to even scratch the surface of what is at issue here - the devaluation of some members of humanity by other members based on random strangers' internalized arbitrary standards, as well as the process that leads to that internalization.<br />
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Even the eugenicist mindset is not the root of it all, it's simply the product of these value judgements placed on certain individuals, sometimes based on perceptions of health or longevity, often a kind of assumption of productivity, other times an estimated 'cost' to society, spiritual, mental, or material, at times even esthetics, and many other "reasons" all of which, once put through the wringer, come out on the other side as casuistry and reliance on what are essentially very flawed and very antiquated pieces of "reasoning" and "logic". <br />
<br />
Although I'm well aware that they exist, I'd be hard pressed to find an individual in favor of exterminating everyone with Down syndrome. Because, when I put it like this, we'd be talking of genocide, something akin to Hitler's T4 campaign. Not many people approve of the tactics used by the Nazis in their quest to 'purify' the Aryan race. There exists a clear denunciation and abhorrence of Nazi ideology in modern societies. We seem to agree that Hitler's logic was faulty, his aims delusional and disgusting, and stemming from a place so dark that many of us don't care to identify it as a place that could exist in a person.<br />
<br />
Yet, in reality, when we really look at how we're proceeding here as humans, at the ways that disabilities, and especially Down syndrome, get talked about, when we consider how language shapes our perceptions of the world, how it doesn't necessarily reflect anyone's lived experience but takes its cue from a standard presentation, how it can be used to favor a medical professional over a passionate person, parent, or sibling, it can leave us gasping for air when we follow its pointers to their logical end.<br />
<br />
I don't think we give "just words" enough credit in the maintenance of the oppressive systems that plague most of our societies today.<br />
<br />
In the past week (two weeks now since life got the better of my editing and publishing intentions) I've encountered two articles about prenatal testing. Both mention Down syndrome. Both are from respectable mainstream sources.<br />
<br />
Al Jazeera America published a piece by Kat McGowan titled: <a href="http://america.aljazeera.com/articles/2014/2/24/will-new-prenataltestsscareparentsintobaddecisions.html">Will new prenatal tests scare parents into bad decisions? </a><br />
<br />
NPR ran a story by Rob Stein titled: <a href="http://www.npr.org/blogs/health/2014/02/26/282095202/blood-test-provides-more-accurate-prenatal-testing-for-down-syndrome">Blood Test Provides More Accurate Prenatal Testing For Down Syndrome</a><br />
<br />
(Lisa at Life as I Know It came across <a href="http://www.lisamorguess.com/2014/02/27/hes-birth-defect/?utm_source=rss&utm_medium=rss&utm_campaign=hes-birth-defect">a third article and blogged about it</a>.)<br />
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McGowan's piece does not directly deal with testing for Down syndrome, but focuses on a specific sex chromosome aneuploidy, Klinefelter's syndrome. However, possibly because Down syndrome is the most well known of aneuploidies, she uses it to set up a kind of a severity hierarchy of aneuploidies. She attaches the term "debilitating" to Down syndrome in a much greater degree than to Klinefelter's syndrome. <a href="http://america.aljazeera.com/articles/2014/2/24/will-new-prenataltestsscareparentsintobaddecisions.html" style="font-family: Helvetica, Arial, sans-serif; font-size: 14px; line-height: 22px;">"[Sex chromosome aneuploidies] are nowhere near as debilitating as Down syndrome."</a> she writes. A photo caption for the story talks of "<a href="http://america.aljazeera.com/articles/2014/2/24/will-new-prenataltestsscareparentsintobaddecisions.html">...Down syndrome and other serious health problems…</a>" Several times McGowan refers to phenotype as "<a href="http://america.aljazeera.com/articles/2014/2/24/will-new-prenataltestsscareparentsintobaddecisions.html">symptoms</a>" as if both SCAs as well as Trisomy 21 are diseases. <br />
<br />
Voila. Regardless of what the headline of the article purports is the question the article addresses - whether expectant parents might be making decisions to terminate a pregnancy in the case of an aneuploidy too rashly - in fact, our beliefs that all aneuploidies are bad news, and of all those aneuploidies some are worse news than others are reinforced by word choice. It is set up as fact that all aneuploidies debilitate, as in "make someone weak and infirm", but some of them, and I can't but wonder whether what we understand as intellectual disability isn't one of the major defining factors in arriving to this degree of debility - for McGowan specifically in this instance, but really for the cultural constructs she draws from to make these broad statements on disability - make someone even more "hindered, delayed, or weakened" than others.<br />
<br />
The article begins by all but picking up a paint brush with red paint on it and repainting the edges of that box with the giant tick-mark in it that says NORMAL in bold.<br />
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But what is <i>normal</i> here? Who are we employing as this non-debilitated example whose life is smooth sailing and not hindered, delayed or weakened by a condition?<br />
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Well, of course a person without an aneuploidy. Duh. Or in the specific case of this article, a person with a sex chromosome triploidy that can be fully remedied to practical nonexistence if only detected early enough. Double duh.<br />
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Disability is bad, yo. Normal is the new (and the old) black.<br />
<br />
However, the only guaranteed difference between a person with and a person without an aneuploidy is the number of their chromosomes. There are no guarantees on what those chromosomes are doing for their owner. intellectual disability is not unique to Down syndrome. Heart conditions are not unique to Down syndrome. Celiac disease is not unique to Down syndrome. Neither is leukemia. On the flip side, high intelligence is not guaranteed in a state of no aneuploidy. Neither is a happy marriage, a paying job, chocolate, good books ad libitum, great friends, being able to stick to your budget, or you know, living a happy, long life while contrasting oneself to those with a short life of suffering that is the unequivocal result of an aneuploidy. <br />
<br />
The only guaranteed result of an aneuploidy are people who will have, or who <i>other</i> <i>people</i> will perceive to have a more difficult time functioning in a society that was specifically designed in ways that do not meet their needs, ignores those needs in favor of meeting the needs of a statistical illusion, deems those needs less valid in a multitude of theoretical as well as material ways, and justifies not meeting those needs in subtle ways through language, arguments focusing on an unchallenged concept of 'common good', access and its denial, and beliefs and belief systems.<br />
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If it takes you longer to process things, or if you are unable to easily comprehend whether someone's being sarcastic or earnest about what they're saying, or if you don't really understand what being sarcastic is all about and prefer to listen to the words and decode their literal meaning does that mean you are debilitated? Does that make you unhappy? Is debilitating the same as suffer? <br />
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Of course not. If someone whose condition debilitates them is unhappy with their life then Down syndrome is not a debilitating condition. <a href="http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.34235/abstract">At least statistically</a>.<br />
<br />
Yet, the word 'debilitating' and its connotations and baggage are there in the article, as are other words that subtly work to first introduce and then reinforce how anyone reading the article will view aneuploidies in particular and disability in general. The language subtly props up the medical model while downplaying the social model. The language sticks close to the notion of people as pathologies, instead of everyday, regular individuals.<br />
<br />
And we read on, while we read in, take on board, integrate, let shape and set in.<br />
<br />
Without our even truly realizing it, we are steered towards the understanding that disability is something to be fought, eradicated, in need of curing or fixing. We are lead towards thinking that all disability equals suffering and aborting an 'abnormal' fetus is a morally, not only acceptable, but the <i>caring</i> parenting choice to make.<br />
<br />
I did say <a href="http://www.slate.com/articles/double_x/doublex/2014/02/abortion_as_end_of_life_care_why_i_chose_a_peaceful_life_and_death_for_my.html">parenting choice</a>. When disability is concerned even <a href="http://www.xojane.com/issues/yet-another-disabled-child-killed-by-family">murder is sometimes cloaked</a> in the language of parenting and love. It's a slippery slope my friends. Eugenics and what we consider especially despicable about Nazi ideology can be found right there, right within the word "debilitating." <br />
<br />
Abortion is not the problem, neither are the prenatal tests, the problem is that both are painted as the compassionate thing to do, for the <i>better</i>, in order to ensure the 'natural progression of things', when it comes to providing a <i>balanced</i> view in the mainstream, run-of-the-mill media (I'm not even touching on the arguments that rival Hitler's or the kind of people that peddle them, or their adversaries who present us with the equally disturbing pedestal ableism opposition). Although in the case of the prenatal tests discussed in these 'balanced' articles, the notion of knowledge and information being good things is almost always invoked, and rightly so in my opinion, these are almost always made to signify the medical aspects of a genetic variant ("1 in 2 children with Trisomy 21 will present with a heart condition."), and how to plan for those medical "adverse health effects." Information as power is almost never invoked in order to foster acceptance, culture, or community for anything but "peer support."<br />
<br />
The language in these articles, and these articles are only examples, illustrate the greater issue, and are in no way especially horrifying cases, remains deeply ableist and problematic. And the intent, if there ever was one, to present something multifaceted and complex, is crowded out by the dogma inherently there in the chosen language. No measure of considering context or a multitude of potential meanings will stop the internalization of the construct brought on and reinforced by the reading.<br />
<br />
Reinforcing an existing fallacy will do nothing to affect change. It will do the opposite. The paradigm won't shift if we turn the other cheek or appreciate the intent.<br />
<br />
McGowan's piece leaves the reader on a hopeful note, which I greatly applaud, but that contrasts with the language employed in the piece. <a href="http://america.aljazeera.com/articles/2014/2/24/will-new-prenataltestsscareparentsintobaddecisions.html">"</a><span style="background-color: white; color: #3f4245; font-family: Helvetica, Arial, sans-serif; font-size: 14px; line-height: 22px;"><a href="http://america.aljazeera.com/articles/2014/2/24/will-new-prenataltestsscareparentsintobaddecisions.html">Better information for parents and better-trained genetic counselors could help broaden social definitions of what’s normal. After all, everyone has minor deficits and imperfections. 'It could widen the margins of tolerance for what’s an acceptable human condition,' he says."</a> </span>she writes quoting a bioethicist. However, the worry the headline of the article alludes to is not a concern over someone aborting a fetus with Down syndrome because they haven't been provided enough information about the variant. Somehow Down syndrome doesn't seem to be included even within this broader definition of "acceptable human condition." <br />
<br />
<a href="http://www.npr.org/blogs/health/2014/02/26/282095202/blood-test-provides-more-accurate-prenatal-testing-for-down-syndrome">The story on prenatal tests by Stein</a>, published on NPR, seems to be more concerned with how accurately the tests actually detect Down syndrome in a fetus than anything else. The main focus is the fear that women will end up terminating a "perfectly normal" pregnancy because of a false positive and the hope that these tests will lessen the number of "unintended miscarriage[s] resulting from a procedure that didn't need to be performed in the first place." There is one line about anti-abortionists, after which the article mentions "Advocates <i>for</i> people with Down syndrome" (my emphasis) and their concerns with the prenatal tests, as if people with Down syndrome have no agency or voice, no opinion on prenatal testing for the thing that <i>they</i> share, that <i>they</i> have, that is a seminal part of <i>their</i> lives. That only <i>they</i> can ever definitively know.<br />
<br />
Journalistic balance and different points of view won't truly emerge by presenting the medical and official arguments in a 'sophisticated' and 'factual' light while presenting a medical expert, Dr. Skotko, as making an emotional plea. He is one of the world's leading experts in Down syndrome, yet all too often, as happens in Stein's piece, he becomes the passionate, loving sibling (which he is, but it doesn't diminish his expertise as a doctor or his authority in matters dealing with Down syndrome.). He is allowed to express his brotherly love in a way, I have to note, that stinks faintly of 'a sister only a brother could love' type of thinking, to readjust a cliche, a kind of a 'well, what is he supposed to say?' type of a deal. A message underscored by a quick return to the <i>real</i> problem with the tests: "but these tests might enable for someone to terminate for non-debilitating reasons." Sigh. <br />
<br />
It doesn't seem to me that it is possible to provide a balanced article when the rhetoric employed is biased, prejudiced, and ableist language, that implicitly designates someone's chromosomal count as inferior, unnatural (Yes, they engineered my kid in a lab, she came in a box with a fancypants manual. O.o), and someone's lifespan and illnesses and issues related to that life as much worse than the illnesses and issues related to the life of a typically developed person.<br />
<br />
I'm now going to leave you with a sentence that I'm stealing from a Slate article that I enjoyed, but can't remember what it was about and thus can't find again, but that influenced this post and made me realize how much that post that I wrote way back when we were living in South Africa, about renaming places that had Apartheid-related names, made sense, and how long I've been mulling on this: <a href="http://biblehub.com/genesis/2.htm">"<span style="background-color: #f0f9ff; color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 21px;">And out of the ground the LORD God formed every beast of the field, and every fowl of the air; and brought </span><i style="background-color: #f0f9ff; color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 21px;">them</i><span style="background-color: #f0f9ff; color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 21px;"> unto Adam to see what he would call them: and whatsoever Adam called every living creature, that </span><i style="background-color: #f0f9ff; color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 21px;">was</i><span style="background-color: #f0f9ff; color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 21px;"> the name thereof."</span> </a> 'Naming' as owning, as having dominion.<br />
<br />
Here's the Slate thought:<br />
<br />
"Symbolic change and practical change have a symbiotic relationship"<br />
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No point? On point?</div>
Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com5tag:blogger.com,1999:blog-6586234076318438189.post-65878889026955741432014-02-21T10:27:00.000-08:002014-02-21T15:43:02.960-08:00I don't respect your (or my) intelligenceWhat does it mean to be smart? What does it mean to be stupid? Are smart and stupid opposites, smart and unintelligent, or intelligent and unintelligent? What do all of these words we throw around plenty really signify and how are they used in our societies today?<br />
<br />
Why do we talk about intelligence, intellect, smarts, and cognitive function so much and why does it seem like having them in oodles is an unequivocally good and positive thing? Something to be respected and revered?<br />
<br />
Something <a href="http://www.scientificamerican.com/article/new-drugs-may-transform-downs-syndrome/">to strive for if you're deemed to have "learning and memory deficits"</a>.<br />
<br />
Or to put it more bluntly and in a polarizing manner: Why are evil geniuses something that only seem to exist in fiction?<br />
<br />
Where is the love for the unique, middling, average, common, regular individual when it comes to intelligence? Why is often the most disparaging thing we say about an intelligent individual's intelligence that they are "wasting" it?<br />
<br />
Why does the frightening part about Down syndrome seem to boil down to what not so long ago was known as "mental retardation?"<br />
<br />
There are many people in my life and its periphery (lucky for them <i>way</i> out there, lest I'd have dispatched the flying monkeys already) who have sent me articles, videos, stories, and more about what individuals with Down syndrome are <i>capable</i> of, what people with Down syndrome have <i>achieved</i>, what all will be possible <i>regardless</i>, <i>in spite of</i>, <i>in the face of</i>, as well as, and I want to specifically add this as a negative also, <i>because</i> of Down syndrome.<br />
<br />
As if I didn't see every single day what my kid was, is and will be capable of. As if I weren't watching. As if my child existed in a vacuum as the syndrome and not as my specific, hard-to-handle kid, who will be and already is very much her own person with her own strengths and weaknesses and passions and dislikes. <br />
<br />
As if I didn't know. As if I weren't irrevocably and embarrassingly in love with her and think her the best bees knees that ever was. As if I weren't the one person in the world with nothing but unconditional love and bottle-bottom-like mom-goggles of pure wonder for forever, for <i>my</i> daughter.<br />
<br />
As if I were worried that she wasn't "smart enough" to survive our society.<br />
<br />
I am worried. Of course. But my being so has nothing to do with my kid and her particular Down syndrome and everything to do with you, the society, and the completely random ways that lead to survival and success today. These completely arbitrary ways in which we place value on other humans.<br />
<br />
We often say we respect someone whose views are completely opposite to ours when they can argument for those views in intelligent and educated ways. We say we enjoy educated debate. How did that happen? Why should I respect a tea partier for being able to argument for something base and vile in ways that draw on theory and critical analysis?<br />
<br />
Just today I stumbled on a discussion on Twitter attempting to trace the unjust end of the <a href="http://www.upworthy.com/a-tv-star-had-to-explain-why-a-white-man-killing-a-black-kid-is-an-american-problem-not-a-black-one">Dunn trial</a> to a juror's potential "cognitive deficits" rather than a system of racial oppression in the US.<br />
<br />
Excuse me? <br />
<br />
There are constant comments coming from within the Down syndrome community. "Reading above grade level" said <a href="http://www.politico.com/story/2014/01/state-of-the-union-2014-cathy-mcmorris-gop-response-102772.html">Cathy McMorris Rodgers</a> of her son in the rebuttal to President Obama's State of the Union Address. I'm sure she meant well (And yey for her kid, I guess? Not sure.) but where does that leave someone who will not live up to that, now tacitly set, standard?<br />
<br />
I have <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2012/07/on-being-down-syndrome-superstar.html">written about achievement before</a>, when Babe was only 8 months old. I can't believe I'm still feeling the need to hammer on and on about it. Others have <a href="http://www.lisamorguess.com/2013/07/03/average-is-a-dirty-word/">written about it</a> too. And <a href="http://www.lisamorguess.com/2014/02/11/dumb-funny/">written about it some more</a>. People are <a href="http://downwitdat.blogspot.com/2014/02/the-t-21-blog-hop-february-2014-ableist.html">taking on language</a>, really slurs, that are used to attempt to inflict embarrassment and hurt (or what, I don't know?) by equating the recipient with someone not traditionally considered intelligent or with someone having a lower, as measured by the standards today, intelligence quotient (IQ). Slurs that when used by certain people - those wanting to place themselves on the right side of history - not only dehumanize, but <a href="http://www.mmonjejr.com/2014/02/on-social-justice-bloggers-minimizing.html">minimize ableism</a>, especially and most alarmingly in the context of social justice struggles.<br />
<br />
Often equating, implicitly as well as explicitly, the recipient of the insult with <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2013/03/spread-word-to-end-word-and-quit-it.html">someone like my kid</a>.<br />
<br />
Many people have repeatedly <a href="http://downwitdat.blogspot.ca/2013/11/its-never-just-a.html">taken on</a> the slurs retard and retarded. Others have challenged <a href="http://stayuplate.org/uncategorized/thats-not-my-name-an-anti-hate-crime-anthem/">special</a> and even <a href="http://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html">created glossaries</a> (check this out, please), others remind us of <a href="http://www.mmonjejr.com/2014/02/deconstructing-stupid.html">what all the slur 'stupid' really carries</a> in its connotations. There exist <a href="http://www.autistichoya.com/2014/02/violence-linguistic-ableism.html">great analyses</a> on why ableist language is never "just words". I've talked about the <a href="http://dsq-sds.org/article/view/1665/1606">rhetoric of ableism</a> many times and will do so again. I'm sure.<br />
<br />
But I also feel the need to reel it all back in a little bit and really address the foundation of it, something that continues to catch me off guard in the realm of social justice:<br />
<br />
"They treated me as if I weren't intelligent."<br />
<br />
"My different way of communication doesn't mean I'm stupid."<br />
<br />
"Just because I have a learning disability doesn't mean I'm not smart."<br />
<br />
And many other statements that always come with a caveat that can be broken down to an assertion of intelligence <i>regardless</i> of some physical or developmental disability.<br />
<br />
As if intellectual disability is the worst, lowest, least desirable, and in most need of fixing kind of a disability. As well as a disability that doesn't in fact stem from a society that ignores the needs of those with lower IQs, but that is an impairment, a deficit that should not exist and that society doesn't have to accommodate for.<br />
<br />
Too different. Unquestioningly bad. <br />
<br />
These statements are like a sharp punch, right in my gut. Every. Single. Time.<br />
<br />
They exclude my kid. They designate her as less worthy. They function to place her on the lowest rung on the ladder of humanity. They reinforce that ladder that shouldn't exist in the first place!<br />
<br />
When people have privilege, the empathetic thing to do is to check it, not go "People think I'm of this oppressed group, but I'm actually not and it really pisses me off when people assume I'm not privileged." No one says that. Except for when they do about intelligence.<br />
<br />
Intelligence privilege. It's a thing.<br />
<br />
I won't waste your time telling you just how smart my kid is. Because she may not be smart, I don't know. She may not grow up to be intelligent. Statistics and research put estimates of her future IQ likely somewhere between 25 and 70. She might grow up to have an IQ of 75, who knows? But she might also have an IQ of 35. But that shouldn't make a difference in her worth, her value as a person, as a member of society, as a human being.<br />
<br />
It's not about all of these things people with Down syndrome can do. Or about some undiscovered third eye/ spiritual connection/ alien coding abilities for when the overlords land they might have. It's not about them, it's about us.<br />
<br />
And how fucking fucked up we are for looking for reasons for existence for them.<br />
<br />
Justification, qualifications, reason, purpose.<br />
<br />
I don't have any of that. Why should my kid? I mean, really, think about it. I'm the result of some beautifully complex biology, some hard work, choices, situations, networks, love and some will, mine and others. <br />
<br />
I have no purpose. There is nothing that justifies my being here, doing what I do. Why should the standard be different for my child?<br />
<br />
So when you call someone stupid, or think it a total win to attack by trying to denigrate someone's intelligence I want you to stop, look in, listen, and reflect. I don't want you to just stop using slurs (Although could you please? Thanks so much. Now, see how easy that was to stop contributing to hurt and oppression? Don't be an asshole when you can avoid it, unless you have a really good reason and here you really don't, k.), but I'd like for you to give this concept of intelligence at least as much critical thought as you give beauty, body type, race, height, gender, in regards to what all these "say" about the person, their worth, their character, their self, or ( Zeus forbid, I really don't want to even mention this because why would you attack someone's person instead of what they just said) their argument, and what you, by bringing this attribute into the discussion, nay into your value hierarchy, are putting out out there into the world.<br />
<br />
Intelligence can be a valuable tool. It gives you privilege. But so do good looks, white skin, and wealth, but we don't agree that those should be respected without question and challenge, or deemed as the norm that all others must conform and aspire to. We fight those arbitrary standards. Let's fight this too. <br />
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Is this a <i>smart</i> choice? To be honest, I don't know. But then again, I don't really care either.</div>
Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com7tag:blogger.com,1999:blog-6586234076318438189.post-7227673084819861722014-01-21T15:23:00.000-08:002014-01-21T17:22:05.379-08:00#abledpeoplesay awful things sometimesAnd those times quickly amount to evidence of a profound lack of access, inclusion, acceptance, and equality. Words are not just words.<br />
<br />
Yesterday Lydia Brown, who blogs at <a href="http://www.autistichoya.com/">Autistic Hoya</a>, started a hashtag on Twitter called <a href="https://twitter.com/search?q=%23abledpeoplesay&src=hash">#abledpeoplesay</a>. It quickly garnered the attention of many people with all different kinds of disabilities, a few allies, a few abhorrent bots (that's a good sign in terms of trending popularity), and eventually of "abled people" some of who felt the need to criticize it, its aims and its purpose. <br />
<br />
I think I know what Lydia meant to do with it, but in reality I can only assume (all right, I'm just guessing). I think she meant to give a place to disabled people to speak about their everyday experiences of tiny, as well as some earth-shatteringly huge and devastating, acts of discrimination. I think she meant to make people coming across the tag to check themselves, their actions, and their attitudes, but also, and this is still me assuming here, she probably wanted to create a place for people to not feel alone in being subtly and not so subtly oppressed. By society, by complete strangers, by their families, and sometimes by themselves.<br />
<br />
I think she succeeded, and the tag is still going strong.<br />
<br />
I learned so much from the tag. If you haven't already, y<a href="https://twitter.com/search?q=%23abledpeoplesay&src=hash&f=realtime">ou really should check it out</a>.<br />
<br />
But it also made me think more about some things that I have quietly and not so quietly been turning over in my head for some time:<br />
<br />
Whose responsibility is it to work for change in society, to work for acceptance, inclusion and equality?<br />
<br />
What makes a self-advocate? <br />
<br />
Who defines what is exclusive, hurtful, or offensive towards a minority? (I know this is kind of an easy one, and there really only is one right answer- the minority in question - but I'm including it <i>for teaching purposes</i> :-D You'll get that "joke" later)<br />
<br />
And<br />
<br />
Whether "You'll catch more flies with honey", "Educate, don't castigate," and "Don't just complain, do something about it" aren't just ingredients in a soup of <a href="http://loveexplosions.net/2014/01/16/tone-it-down/">tone policing</a> in lieu of actual counterarguments, silencing, and ways of interjecting yourself into a debate not <i>about</i> you instead of actually listening? (Yes they are, I'll tell you that right now, but I'm including this to make a point in more than 140 characters.)<br />
<br />
<b>A DUTY to change a resistant society</b><br />
<br />
As I watched the tweets accumulate on the tag there were a few criticisms regarding what the tweeters termed as a "campaign". Someone tweeted "Disappointed by the #abledpeoplesay movement. Is this an educational campaign?" assuming that this was a concerted effort by members of a movement to educate. That this was <i>about</i> them (us), the <i>abled people</i>, and not about the people tweeting their frustrations, their hurt, their diminishing and dehumanizing experiences (and in my case a few choice "well-inteneded" comments about my own child that I hope she never has to hear when she's old enough to understand their true ableist weight) to each other and perhaps to an audience that was willing to do the most important thing a potential ally could ever do: <a href="http://everydayfeminism.com/2013/04/the-importance-of-listening-as-a-privileged-person-fighting-for-justice/">listen to the member of the oppressed minority and not elbow themselves into the spotlight</a> or educate the oppressed minority on how "best" to do things. <br />
<br />
The initial criticism was followed with "[The hashtag] comes across as angry and sarcastic." as if that was a bad thing, something that should be avoided in the <i>noble</i> fight of the <i>noble</i> people with disabilities for <i>noble</i> and <i>forgiving</i> freedom, in their <i>noble</i> wish to <i>gently educate</i> those who <i>just</i> mean well. Eye roll. If that comes across as angry and sarcastic then at least I'm on point. <br />
<br />
Did I mention<a href="http://loveexplosions.net/2014/01/16/tone-it-down/"> tone policing</a> as a tool for silencing and derailing?<br />
<br />
And in case you were wondering how disabled people should go about their lives the tweeter offered this last bit of helpful <strike>wisdom</strike> criticism: "I prefer to shock with intelligence vs shame." Because when someone undermines your clinical depression/ your insistence that autism isn't an epidemic and there's no need for a cure/ your right to identify yourself by X instead of Y/... or some dehumanizing tidbit of curiosity-gives-right-to-personal-information just because (Why? Because they haz opinionz on thingz? Other post…) there's nothing like sending them to that massive database that has it on file that people with disabilities are people too and explains it all nicely and politely to a person who is willing to listen and able to empathize.<br />
<br />
Engage more sarcasm (and maybe a pinch of anger, but I'll be honest most of that is just my delightful personality):<br />
<br />
Because people with INTENTIONS have a RIGHT to know and be educated ON THEIR TERMS and WITHOUT BEING OFFENDED in any way, and it is up to THOSE WITH DISABILITIES as a movement to MAKE THAT HAPPEN, to figuratively RAISE THEMSELVES out of OPPRESSION as long as they're NICE and POLITE about it.<br />
<br />
Big EYE ROLL (These are making my sockets ache). I mean what could you possibly learn by reading a slew of things that you've lobbed at disabled people without thinking and learning how much you've hurt and violated them and their existence, anyway? Nothing, I tell you, nothing! There's no way you'd know more about what not to say after that. Nope. Never.<br />
<br />
And then again, it shouldn't be up to the abled people to try to learn about inclusion, acceptance, or equality. I mean, simple 30-second google searches on any of the above turn up absolutely NOTHING. Life's just too complicated to do anything for anyone but myself, right?<br />
<br />
Inclusion, acceptance, equality, minority, oppression, stereotypes, privilege. Such foreign concepts.<br />
<br />
*puts in eyedrops*<br />
<br />
<b>My kid is not a self-advocate and I am not an important voice</b><br />
<br />
My kid is two. She likes Sesame Street, vegetable stick fries (which are probably just dyed potato chips and I'm a gullible parent), her lion toy, and dancing.<br />
<br />
She doesn't understand that she has Down syndrome. To be honest, I don't think she understands that I have the magical ability to tell her that "Ice cream is all done. No more." even when there actually <i>is</i> more in the freezer. Because she is a toddler. She doesn't yet understand what being disabled will mean for her life. She's more interested in trying to figure out which button turns on the television on the remote (and how to get to that remote on top of the book case).<br />
<br />
There aren't any new pictures of her in which she is identifiable on this blog (or really anywhere apart from closed, familiar communities) because she hasn't told me that she'd like to be used in a "campaign", as a tool for a movement to do with advancing the causes of those with Down syndrome. If she one day tells me that she'd like to be out there self-advocating with whatever tools she'd like to use, she's welcome to it (Perhaps like <a href="http://www.autistichoya.com/p/about.html">Lydia Brown</a> or <a href="http://www.youtube.com/watch?v=duQ4DkefmXc">Eric Matthes</a>, she'll become a force to be reckoned with?), but I can't make that choice for her. She is not an awareness campaign, nor is it her responsibility to educate anyone. Life cannot be moving from a teachable moment to the next, simply focusing on intent when <a href="http://everydayfeminism.com/2013/07/intentions-dont-really-matter/">impact</a> is what we end up living with. And even then, without aggressively focusing on the foundation that allowed for a good intention to go so astray as to become a violation of someone's full personhood instead, all we're left with is a sad "sorry you're offended" or in Twitterspeak: #SorryNotSorry. <br />
<br />
Advocating is not even my responsibility. It's my desire. It's what I feel driven to do. Not just because of my disabled kid, but because I want to work for a world that is better for everyone, more equal, less cruel, less arbitrarily dismissive and silencing. A world in which more people are less focused on themselves and more focused on others and how their existence affects the existence of others.<br />
<br />
But I <i>choose</i> to do that. I am <i>privileged enough</i> to be making that <i>choice</i>. I am privileged to be able to decide exactly in which way, when, and where I wish to advocate. I can choose to try to represent and I can choose to keep quiet. In that I am privileged.<br />
<br />
And while it hurts me to my core that my child is not often seen as an equal or worse, I can't speak <i>as</i> her. I can raise her, guide her, give her kickass tools for badass fights for equality, and advocate for her while she takes some time to enjoy her childhood, I can't ever <i>be</i> her, or even know what it's like to be her.<br />
<br />
But I'm trying to listen. Let it sink in. Really sink in, instead of looking on as we, the abled people, abled parents, decide who, what, how, when, and where, for this movement.<br />
<br />
I mean, <i>really</i> let it sink in. <br />
<br />
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This is NOT about me. Not everything is about me.<br />
<br />
****<br />
<br />
Trying to find out who the real architects of change should be.<br />
Join us at <a href="http://downwitdat.blogspot.ca/2014/01/welcome-to-t-21-blog-hop-january-2014.html">Down wit Dat</a>.</div>
Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com2tag:blogger.com,1999:blog-6586234076318438189.post-62780402643362595762014-01-18T17:13:00.000-08:002016-01-13T09:17:09.136-08:00What will you teach your child?If I see another article, meme, post, essay, poem, or a wannabe PSA that focuses on how hard life is for <i>Special Needs Parents</i> (apparently, this being a SNP is a <i>thing</i> and we are all the <i>exact same</i> and our struggle, because that's what our lives are, is the <i>exact same</i> also) and how you, yes you, the person who is not in this club of Stepford parents, can help us by "really listening", "trying to understand and empathize", and baking us casseroles or offering to do our laundry, I will scream.<br />
<br />
Seriously. I will go apeshit on a bottle of wine and cry myself to sleep after yelling unconstructively on various social media (example: Blogger). <br />
<br />
I am not a member of a marginalized and oppressed minority, my kid is.<br />
<br />
You probably think I sound ungrateful, some will say how divisive and dismissive of others' experiences I'm being, but hell: I'm never going to like being shoved into a box and made into someone's cause. This "we need to validate everyone's truth" stuff posing as dogma goes both ways, and I've had enough.<br />
<br />
Shit.<br />
<br />
My kid doesn't deserve to be shoved into a neat little "this is how someone with Down syndrome is and will be," so why would I ever want stuff going around about my parenting identity that dismisses my actual reality and puts me in some corner to suffer under stares? Why would I want stuff going around about me that diminishes my kid, her person, her reality and her needs, and only looks at disability as something a family experiences, that <i>happens to</i> a family, something that's all about parents and siblings?<br />
<br />
Fuck that shit.<br />
<br />
This morning, as I sat on my couch, surfed Twitter, sang along to The Beautiful South's <a href="http://www.youtube.com/watch?v=SHnhMvSxOf0">Don't Marry Her</a> and El Chapo de Sinaloa's <a href="http://www.youtube.com/watch?v=j7b_oBnQRqw">Para Que Regreses</a> and tried to figure out whether my feminism was enough and whether it was okay for a feminist to unabashedly love such pieces of music, and just plain lived my average life, while the Babe danced like a banshee on one mother of a sugar high, I realized a few things.<br />
<br />
1. I don't suffer. We don't suffer. We are not having a hard time because of having Down syndrome as part of our everyday.<br />
<br />
2. I can fucking do my own laundry and bake a mean fucking casserole, if I want to. With and without bacon.<br />
<br />
3. I want you to listen because I want you to understand why pitying me and a few other mean mothers I know will just make us <a href="http://downwitdat.blogspot.com/">meaner</a> and louder. And sweary. And why ungrateful might just take on a new dimension if crap narratives keep getting this much fucking airtime.<br />
<br />
4. Perpetuating a narrative about parents and caregivers of disabled people that focuses on hardship and need for compassion will hurt MY kid in the end. And I never want her to think she is or has ever been a burden on anyone. Especially when she is the biggest source of joy, love, goodness and fucking awesome sauce for me and the Viking I've ever encountered. So stop shitting on my kid with your assumptions of grief. Stop it.<br />
<br />
5. What I need from you is for you to make my kid's access needs your access needs, for you to fight for inclusion and acceptance. What I don't need from you is emotional support because my kid doesn't have proper access to the same opportunities and experiences her typically developing peers have.<br />
<br />
6. There's no way I can be nice or constructive about this. I'm at my wits end and conjuring up sarcastic memes and screaming into the wind are no longer enough.<br />
<br />
Fuck you, pity party. I have lots of love, plenty of awesome, several suspicious casseroles in the freezer, and plenty of clean clothes (No mom, like for real). Deal.<br />
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Everyone should have a felted skunk.<br />
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****<br />
<br />
Intersecting (IT'S NOT ONE ROAD, PEOPLE) with Jen from <a href="http://downwitdat.blogspot.com/2014/01/welcome-to-t-21-blog-hop-january-2014.html">Down wit Dat</a>. </div>
Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com10tag:blogger.com,1999:blog-6586234076318438189.post-50314151615732323352014-01-05T15:40:00.001-08:002014-01-05T17:14:32.411-08:00Happiness is Probably not a Warm GunWhat do happiness and being happy mean?<br />
<br />
To me, on a personal level, the answers come easy: The Babe, The Viking, my parents, my siblings, my friends and comrades, reading, steaming hot coffee in the morning, good and witty comedy, kindness in myself and others, sun glinting off waves, drinking wine in good company, new snow, feeling heard, a good run, feeling trusted, gaining knowledge, and being myself. In a nutshell.<br />
<br />
But what about in a more collective sense? On a societal level?<br />
<br />
I stumbled upon an article about this guy's Happiness Project. (It's in Finnish and can be found <a href="http://perjantaikokki.fi/2014/01/02/uuden-vuoden-lupaus-satasyytaollaonnellinen/">here</a> should you feel inclined to challenge Google Translate once more, although Finnish has so far proven rather an insurmountable task for it). In it a Finnish expat living in Switzerland writes that "joy and happiness depend more on one's attitude and personality than the surrounding reality,"* that since he has his "basic building blocks of happiness together (health, job, and family)"* he is in grave danger of being sidetracked into a life in which he'll find it hard to experience happiness from everyday things and in which "food will have to be mind-blowing to taste of anything, every holiday shot will have to be photoshopped for it to be shown to the neighbors (or shared on social media). A life in which happiness can only be found by screaming out one's hurt by denigrating others on internet forums."* Sometimes he has the urge to shout at those who complain over what he deems as nothing: "WHY ARE YOU COMPLAINING WHEN EVERYTHING IS ALL RIGHT FOR YOU!"* So he's recommitting himself to finding joy in small things, at least once a day, a hundred times, and would like for you to do this too, as well as documenting it or not somehow. He wants you to stop complaining over nothing and start finding joy in seemingly insignificant things. <br />
<br />
I don't wholly disagree, and I don't doubt that what he describes is very true and valid for him and his individual circumstances. I also command him for looking in and attempting to chance a tune he does not want to hum to. Good for him.<br />
<br />
However, there are aspects of his article I'd prefer framed differently, delved more into, questioned, challenged, researched, and not presented in a way that to me seems very much like building on unquestioned truths, practically facts.<br />
<br />
I mean, I'm all for happy, but not at any cost.<br />
<br />
<b>Basic building blocks</b><br />
<br />
The first time I <a href="http://utterlyunpublishedauthor.blogspot.com/2011/05/down.html">wrote about finding out that Babe had Down syndrome</a>, I framed the post around the ubiquitous and well documented exchange that goes something like this:<br />
<br />
Every other person: "So, do you wish for a boy or a girl?"<br />
Expectant parent: "We don't care, as long as he or she is healthy."<br />
<br />
I think I even linked to a Brad Paisley song about such thoughts. And then I went on to say that my kid will never be considered quite healthy. A statement which I will now amend, but not really. I know Babe and others with Down syndrome are not sick by virtue of having Trisomy 21. They have 47 chromosomes, a chromosomal variant, and that's it. End of story for me health-wise. However, when expectant parents utter the word <i>healthy</i> in the above scenario they don't mean "I hope the kid doesn't come out and turn out to have the flu or a stomach bug," they mean "I hope the kid does not have a chromosomal abnormality, be missing a part of the brain, turn out to be Autistic, have extra limbs or be missing some, or some other stuff that scares the bejeezus out of me."<br />
<br />
So whenever I see "having my health" or "being healthy" listed as basic building blocks to having a good and happy life and being able to appreciate what you have, several things spring to mind. Not in the least my honest wish that my kid can one day say "My impairment is a <i>source</i> of joy, happiness, and connection for me." Or use whatever lingo will come to replace such a limiting term as 'impairment'.<br />
<br />
I really mean that.<br />
<br />
No, I'm not joking, in denial, or grasping at straws. I'm only asking for you to take your worldview, turn it completely upside down and then shuffle it some, drop a few hundred pieces and add in a thousand new ones. Or at least try. I want to question and challenge what "having my health" or "being healthy" have come to signify in our society, health as morality, achievement, healthy as the norm, as the default, and "being healthy" as a myriad of, often contradictory, aspects.<br />
<br />
Then do the same for job and family. For achievement. For poverty. Then for intellect.<br />
<br />
Then for cancer. Nope, still not being unreasonable. I know cancer is a horrible thing, but I also know that having cancer or having had cancer does not make a life less worthy or have to mean the disappearance of opportunities for happiness. I believe cancer and happiness and joy can all coexist, if need be. Much like sadness and joy, or anger and contentment. I don't want to be glib about cancer or trivialize the issue (and if it seems so to you please leave a comment and I'll rethink it), but I do think that a world in which cancer does not rob all happiness is possible, even when it results in a person's passing. It seems to me that this has more to do with attitudes <i>about </i>happiness than cancer.<br />
<br />
To suffer is subjective. And at least I, in my previous life before Babe, had completely misunderstood suffering and its implications to a person's existence. Still, every day, I learn more and continue to grow my understanding. I also have a long way to go.<br />
<br />
But I'm up for challenging and questioning and analyzing in order to <i>be better at others</i>. To discover the systemic wrongs that are mirrored in our thought patterns and that effectively comprise a "surrounding reality" that disables happiness for many. Something that cannot be removed simply by flipping a switch in oneself.<br />
<br />
<b>Happiness as attitude</b><br />
<br />
The Happiness Project I mention above is not the first of its kind I've come across. It seems that many New Year's resolutions this year have focused on being more happy, being more accepting, being kinder to others but especially to one's own self. I think that's great. It's amazing that many people are choosing love and light and acceptance, and I sincerely hope it spills over into the world at large. I also personally choose love and light and acceptance, but with a healthy side of greasy fries, anger at injustice, and prolific outrage. Because I can. I'm privileged enough to do so.<br />
<br />
Being happy is not always a choice one can make. And sometimes suggestions to "stop and smell the roses" or phrases like "the only disability in life is a bad attitude" are downright insulting. (Note: The latter phrase especially if superimposed on a photo of a disabled person. Read more about inspiration porn <a href="http://blogs.independent.co.uk/2012/08/01/bad-attitudes-do-not-cause-disability-any-more-than-good-attitudes-guarantee-health/">here</a>.) I'm naturally referring to still very stigmatized conditions such as depression, but also to having the right to complain, of having the right to have your dissidence known, having your outrage felt and act as an agent of change, yet not having all of that seen as you not being happy or capable of happiness, joy, or love.<br />
<br />
In my opinion, happiness and being happy should not mean you should only see the positive, only say good things, only speak of love and goodness, to look for the bright side, to not dwell, or to keep your mouth shut if you have nothing positive to say.<br />
<br />
No.<br />
<br />
Silence isn't always golden. At least not for me. Someone's circumstances, perceived by others to be "all right" should not mean others then have the right to decide one is complaining about nothing. Or just complaining, lashing out, choosing to be unhappy due to having somehow become so complacent that only hurting others will bring joy. This last part is a leap I have to admit I don't fully comprehend the logic behind, and I'm wondering whether there really is a cause-consequence connection between not having hardships and not being able to enjoy the small things, or whether lashing out actually brings joy to anyone. I'm not sure the "hardships make you appreciate what you do have more" is or should be so easily invertible. I do know one thing though: <i>catharsis</i> is a thing, and not one I take lightly.<br />
<br />
Maybe sometimes happiness and joy just are, just exist. Are felt briefly, or are the foundation to your being simply because that's how your brain is wired. Maybe your brain is wired so that you don't spend much time putting things into categories like 'happiness' or identifying parts of your life as those that bring joy as opposed to those that bring anxiety and despair. Maybe you have bigger, or more colorful, or many very small fish to fry than trying to locate your internal happiness trigger and reset it.<br />
<br />
Perhaps happiness doesn't matter, and doesn't need to matter. This shouldn't mean that you're somehow living your life wrong, or have been pushed to a sidetrack that's not where you were meant to be.<br />
<br />
I've spent lots of energy convincing people that my child, because of her having Down syndrome, is <i>not always happy. </i>And that's the truth. Her being perceived as happy often means that the person behind the perceptions is drawing on a stereotype, justifying my child's existence in the world and what's there to be read between the lines is "you have a lesser, more simple child, a child not capable of great achievements which is how we measure worth, but at least she'll bring warmth and comfort and an angelic joy into the world with her sunny, all-loving ways."<br />
<br />
For her, happiness is not a choice in many an understanding, it's a qualifying attribute imposed on her by "surrounding reality" and used to justify her existence. <br />
<br />
<b>Privilege</b><br />
<br />
I'm aware of the overwhelming privilege in my life to be able to dissect and ponder all this as I've done. I try to be very aware of my various forms of privilege as the <i>absence</i> of a multitude of shit other people, less privileged than I, have to deal with on a daily basis. So, rather than being in the possession of a set of blocks that should lead to a happy life as long as I choose to be "in the moment" and "find joy in everyday" I try to understand that our society is built in such a fucked up way that the most privileged existence is seen as the average, the default, on which happiness can be stacked on or in which it should be found, while simultaneously that most privileged existence, possibly in lieu of experiences of higher to reach I guess, leads to attempts at finding joy by treading on those underneath, or just on others. And as for those not privileged, they're sources of inspiration should they be able to "find joy in their everyday" regardless of the lack of those necessary blocks for the right kind of happiness.<br />
<br />
While I often experience happiness in my life, and if asked, would likely say I'm very happy in my life and in my choices about my life, does that even matter? Why should my working on my happiness and finding joy in small things mean anything at all? Why is happiness and trying to find it within yourself such an issue for us? How did happiness become something to be achieved, our moral imperative? In what kind of a society does it take effort to choose happiness, instead of letting it flow over you as any feeling would, while sometimes embracing anger, sadness, inability, or joy.<br />
<br />
How privileged are we to even be having this discussion? How privileged are we to be able to comment on what should make us and others happy and how happy we should and could be?<br />
<br />
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***</div>
<br />
I know this post has come out somewhat disconnected and rambly, but that's the essence of my happy right now, so I'm leaving it. Although, and I do want to make this absolutely clear, the Happiness Project article that I've linked to is by no means all that I take on in this post, it's merely what finally made sit down at the computer and lay down some of the thoughts I've been having about happiness, joy, disability, illness, shaming, internalized privilege, and more. Furthermore, I'm clearly not done, so please add your excellent thoughts on this all in the comments. That would make me so <i>happy</i>.<br />
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If anyone asks, Xmas didn't happen. K?</div>
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*My translations from an article by Petri Hollmén on <a href="http://perjantaikokki.fi/">Perjantaikokin blogi</a>.Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com1tag:blogger.com,1999:blog-6586234076318438189.post-69257403675798988852013-12-02T20:58:00.000-08:002013-12-02T21:07:27.928-08:00Her place in the struggleToday is <b><a href="http://www.un.org/disabilities/default.asp?id=1607">International Day of Persons with Disabilities</a></b>.<br />
<br />
This year's theme is:<br />
<br />
"<b>Break Barriers, Open Doors: for an inclusive society and development for all.</b>"<br />
<br />
<a href="http://www.un.org/disabilities/default.asp?id=1607">United Nations Enable</a> has called for us to organize, to "hold forums, public discussions and information campaigns to help find innovative ways and means by which persons with disabilities and their families can be further integrated into their societies and development plans."
<br />
<br />
Who am I to argue with the UN?<br />
<br />
So I figure I should try to contribute to breaking a barrier that has been, almost visibly, forming in front of me and my family the further I've delved into intersectionality, Critical Disability Studies, neurodiversity, and crossdisability efforts in regards to Disability Justice.<br />
<br />
Yes. I've gone and lost myself in theory again, but this time I've kept praxis right there, implementation at the ready, so as to not forget why I'm clicking on yet another link or swiping to turn one more page.<br />
<br />
And I'm wondering where my kid fits in. The adorable toddler with the intellectual disability. I'm having an increasingly difficult time figuring out what <i>access</i> and <i>accessibility</i> - possibly the most important terms in Disability Justice - will mean for her in the future, and <i>for </i>her future. What will it take for society to become accessible for <i>her</i> as well? What will an accessible society look like when it's also a society that fully and meaningfully includes those with intellectual disabilities? How will it function? What means will my kid need to use to secure access? Will anyone fight for her and will she be included in the fights for others?<br />
<br />
What and <i>who</i> is actually meant when access is being discussed?<br />
<br />
Because it has become clear that <i>access</i> is the truest, purest form of <i>inclusion</i>; access to economic capital, to movement, to social capital, to education, to cultural capital, to relationships, to development, and to communication. Really, to life, as we able-bodied and neurotypical understand the concept, in a way that is not granted briefly by a fickle entity but that is put in place in systemic design in such a way that society cannot but function for <i>everyone</i>.<br />
<br />
All too often inclusion is understood and portrayed as brief forays into 'normalcy', the mainstream, or into the existence of those who are privileged - "He calls his friends to make sure they're picking him up, he's making sure they're being inclusive of him," or "I saw my daughter chat with some girls as I came to pick her up from school, that's real inclusion." - resulting in a skewed view. Too often, what in fact is being discussed is regular human interaction, irrespective of the "disability context" and simply routed through jargon of disability. Being friends with someone who has a disability isn't "being inclusive", it's having a friend. A society that is accessible in all areas for everyone is a society that will guarantee the potential, value the existence but disregard the 'saintliness' value in and of all kinds of meaningful relationships, so that there is no "being inclusive" as a possible (saintly, compassionate) behavior nor "being included" as a gift bestowed upon someone categorically 'too different', but instead a playing field that looks equally bumpy and flat from all sides, and that facilitates and fosters human interaction. You know, kind of like how society currently works for those of us who are able-bodied and neurotypical and/ or otherwise privileged, only without the possibility of that collection of 'active deeds of acceptance' some of us keep and many of us need to ward off the "evil' in our hearts.<br />
<br />
From theory to praxis? This one is easy, just requires some thought.<br />
<br />
I may sound like an optimist but I'm not. I simply feel that expecting compassion as a basis for interaction just because two people aren't exactly the same is a little, alright a lot, far off, especially since most of us are equipped with the capacity for empathy, or at least the crude mechanism. We are all human after all, so let's just be human to each other, without expecting pats on the back (or giving them unnecessarily for simply doing what's decent and human). No embedded value hierarchy needed. That just works to dig a hole deeper. <br />
<br />
Still, back to the barrier. Is there a fight for a society where access is the norm for people with intellectual disabilities also, or are we still stuck on a basic kind of inclusion? Inclusion that relies on the goodness of people in order to happen, on compassion towards "those less fortunate", instead of access and accessibility as equality. Are we stuck on "too different?" Are we tacitly looking for qualifiers and justifiers vis-a-vis a cultural notion of accomplishment, or worse yet, perceiving only as a symbol devoid of agency? Are we perhaps, even in the area of Disability Rights and Disability Justice, focused on a culturally constrained and implicitly agreed upon, via minus two, sometimes more, standard deviations, "lack of" intellect or intelligence as a criterion best avoided or glossed over as far as intersectionality or neurodiversity go? Is it because the voice is not strong or many yet? <br />
<br />
Where does my kid fit in? Does she have access into the group of people who fight for access or will she forever be at the mercy of someone's compassion? She has agency - believe me, she does, the loud kind - but does she have comrades too, and will they fight for her until she is old and aware enough to fight for herself and others? <br />
<br />
This is a discussion I need to have. We need to have.<br />
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Wondering whether this is a dead end. </div>
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This is my contribution to <a href="http://downsyndromeuprising.blogspot.com/2013/12/international-day-of-persons-with.html">International Day of Persons with Disabilities blog symposium</a> on <a href="http://downsyndromeuprising.blogspot.com/">Down Syndrome Uprising</a> blog. </div>
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<!-- start LinkyTools script --><script src="http://www.linkytools.com/thumbnail_linky_include.aspx?id=219547" type="text/javascript"></script><!-- end LinkyTools script -->Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com4tag:blogger.com,1999:blog-6586234076318438189.post-24224864508976211422013-10-28T19:31:00.001-07:002013-10-30T17:49:10.824-07:00A unique stinkDuring this month of <i>awareness</i> about Down syndrome many of the better pieces of <a href="http://downwitdat.blogspot.mx/2013/10/advocacy.html">advocacy (note: not awareness)</a> I've read have been about <a href="http://davehingsburger.blogspot.com/2013/10/announcing-turn-blog-for-parents-of.html">unique humans</a>, about being and becoming oneself, about <a href="http://theunknowncontributor.blogspot.com/2013/10/beyond-down-syndrome.html">difference within similarity</a>, and about individuality. As an antidote to the homogenizing rhetoric, sweeping generalizations, and the unfairness that is the stereotyping all too ubiquitous, this is good. This shift in rhetoric when talking about <i>people</i> with Down syndrome is getting us closer to finding true acceptance into the ranks of unmarginalized humans for people who <i>happen to have</i> Down syndrome.<br />
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But what makes people with Down syndrome unique? What makes a person who they are, a one of a kind? What makes a person different? What makes them an individual?<br />
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The short answer that suits my purposes for this post, to all of those questions, and the point I intend to make, is that it is NOT the number of chromosomes in a person's cells.<br />
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Having Down syndrome does not make a person unique, or extraordinary, any more than having strong fingernails, or a high intelligence quotient does.<br />
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Having "an extra chromosome" (are you as tired of this expression as I am? I hope so. It's not extra, it's a third 21st) will not mean one is a '<a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2012/10/on-beauty.html">daisy in a sea of poppies</a>', it doesn't mean I, as a parent to someone with Ds, suddenly found myself vacationing in Holland when I thought I was on my way to Italy. I've actually permanently relocated to a different planet altogether, called parenthood, and I understand that <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2013/10/unacceptable.html">on this planet</a> no one has an identical cottage-pod to ours, there are monsters - big, small, many, or few - in everyone's backyard, and happiness comes in many forms. <br />
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So.<br />
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Having Down syndrome makes a person roughly 1 in 6 million*. Much like my specific nationality makes me 1 in 6 million**.<br />
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My nationality is part of my identity, but it's far from what makes me unique. It's only a tiny part of my identity in my everyday life, and only sometimes do I let it swell to a size that others can recognize. Lately really mainly when <a href="http://www.theatlantic.com/national/archive/2011/12/what-americans-keep-ignoring-about-finlands-school-success/250564/">excellent school systems</a> in the world are discussed. At those points, I'm a FINN. Sometimes I use it to add to my <a href="http://iwastesomuchtime.com/on/?i=82569">quirkiness</a>, other times I use it to almost <a href="http://www.funnyordie.com/videos/3814ffa275/finns-drink-the-most-coffee-in-the-world-from-alive">justify my actions</a>. But however I choose to utilize this piece of my inner being, the fact remains that I <i>choose</i> how I project my identity out into the world.<br />
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<a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2013/10/unacceptable.html">While I can't say how my daughter feels about her Down syndrome</a> as part of her identity - she's a toddler, I doubt she knows what Ds is, most times I doubt she knows what a hippopotamus is, let alone something as interesting to a 2-year-old as identity - I'm pretty sure she'd rather not be just Down syndrome. In every single encounter ever, or even most. I'm just guessing here, but like most people I know, she'll likely grow up to embrace and reject, ignore and include, in ever-fluctuating ways, all of the varying facets of her specific humanness at her disposal.<br />
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Not facets under an overarching umbrella of Down syndrome.<br />
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She might grow up proud to be a Finn, a Dane, or a Mexican, all of those elements of an identity being at her disposal. She might mesh the three. She might embrace her multilingualism or reject it and prefer one language over the others. She could wish to have brown eyes and curly hair or delight in her wispy locks and blue eyes, or she might change her opinion on her looks on a daily basis. She might be quick to speak her mind or prefer to stay silent, observing. She might find herself feeling naked without her glasses or think that they're too much of a hassle. She might want for people to think of her as an artist, an athlete, a regular Joan (or a Joe, or, well, person), or nothing even remotely like that. There might be times her having Down syndrome could come in as an important unifying facet, and times she'd wish it away from under the gaze and awareness of her surroundings.<br />
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I can't know until she tells me. Neither can anyone else.<br />
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There could be and will be an infinite number of things, facets, parts, shards, elements, traits, ingredients, qualities, and more that will play into what makes her unique. Not in the least the perception of another person. The interaction. <a href="http://www.greenteaginger.com/2013/10/cartographies_18.html">The dance</a>. In tiny ways we are born anew in each interaction. <b>This is not news, but that this is just as true in the case of a person with Down syndrome, to many, just might be</b>.<br />
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She will not be unique because she has Down syndrome, she will be unique because of how everything she is composed of comes together, shifts, reflects, and intertwines, with Down syndrome in the mix, one ingredient.<br />
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She is not the <i>real her</i> "underneath that extra chromosome."<br />
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When people say that they hate Down syndrome but love their child fiercely I find myself unable to relate, unable to even understand. I know that when they say this they're saying this out of concern, frustration, or fear, but I wish they'd understand that it isn't really Down syndrome they hate, it is the society that continuously works to disable a person with Down syndrome, beginning with what follows after some milestones are not met in a timely manner all the way to expecting proof of worth and humanity rather than regarding those as the starting point they are.<br />
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It would make me immensely sad had my parents hated the fact that I was born a girl. When I was born they understood that being born a girl in the society that I was born in at the time I was born meant that I would never be awarded quite the same possibilities, opportunities, or respect as a boy would, while more restraint and respect would be demanded of me simply because of my gender. They knew that I and them would have to fight harder for me to have what I deserved for being human and that they would have to attempt to change the way that the society worked, but they didn't for one second hate the fact that I would one day be a woman and not a man.<br />
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Because that would have been the same as hating me.<br />
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I don't hate Down syndrome. I don't hate my child.<br />
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Not a photo of my kid.</div>
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<i>* I realize that estimates of the global number of individuals with Ds vary. I'm cool with this number for now though. Multiple sources and all that.</i><br />
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<i>** I'm a Finn. There's a register. We're organized </stereotypefont>.</i>Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com0tag:blogger.com,1999:blog-6586234076318438189.post-35908371673863555612013-10-22T08:49:00.000-07:002013-10-22T09:19:15.200-07:00Unacceptable<br />
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I'm not someone regularly referred to as an 'older' parent and neither is the Viking, but we did manage to spend ten whole years of married life before we ever seriously considered becoming biological parents. There were times that I thought that motherhood wasn't in the cards for me and other times of rather serious contemplation of adoption, eventually foiled by our respective nationalities combined with our nomadic lifestyle, or the child's existing familial ties. We had discussed parenthood, of course, but much in the same way we had discussed any potential countries we might spend a few years in. A possibility, something to ponder, a new avenue, but not a must nor an inevitability. <br />
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Much along the lines of "But how will becoming parents affect us?"<br />
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Oh how off track can one be? Affect us? How about what is it going to be like for the progeny? </div>
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However, after ten years, somewhat on a whim after some lifestyle alterations, we decided to give it a go. To see whether a pregnancy would take. And promptly conceived on the first try. Because - of course. Quite an unexpected outcome. Took us 16 store-bought pregnancy tests and one blood draw at the doctor's to believe the news, and quite a bit of blind faith in nature doing its thing to keep believing it. Finally, largely due to this nature's attempts at trying our faith in the pregnancy we quickly found out that our daughter would have Trisomy 21.<br />
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<i>Blip</i>. </div>
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So I've never not accepted the diagnosis. <i>We</i>'ve never not accepted the diagnosis. It was never really a surprise or a shock. There was no grief or mourning. My being pregnant on the first try, on the other hand, was earth shattering. Exhilarating yet scary. Life- and direction-altering. After the beginning of the pregnancy, us learning that it might be possible that a live little being would be at the end of this thing, well, that was almost incomprehensible.<br />
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<i>HYPERDRIVE. I REPEAT: PREPARE FOR HYPERDRIVE. </i></div>
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Down syndrome was a blip on the radar that altered the potential directions in the minutest of ways, while the overall direction stayed the same - to boldly go where much more is expected from you (mostly by yourself) than you ever realized - bravely into parenthood. A new yet permanent territory completely void of exits. </div>
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And I wondered. What would it take to be a good parent, a good provider, a good mother. What would I need to know and do to make it in this new place. How could I be the kind of parent my daughter could accept. The kind of parent she could look at when she's all grown up and think "My mother may be loud and obnoxious and not nearly as funny as she seems to think, but man, I lucked out. She loved me and laughed with me, took care of me, and brought me up to be someone I can be proud of."</div>
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That's what I still reflect on. Constantly. How I can be the best mom for <i>my</i> kid. How I can make it so that she can grow to be the kind of person she wants to be. How I can make it so that she can make her own choices, make them well, and make them so that they make her happy and her life good. How I can help her grow into her own person. </div>
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I anguish, and I know I don't know, but I accept that, and can only try to see things from her point of view. </div>
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I can't see yet how she feels about Down syndrome, how she feels about having it, and I can't even begin to guess how she'll feel about it or having it in the future. No one can. What I can see clearly, however, are the systemic injustices that currently await her because of her Down syndrome. I can see the oppression, the Othering, the segregation, the mystification, dehumanization, and the reductionism in perpetuating stereotypes, the lack of supports and access, the prejudice, the discrimination, and the hatred she'll face because of her Down syndrome.</div>
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I can see the ways in which the world finds her <b>unacceptable</b> because of her genetic condition. </div>
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But I don't have to take it. I don't have to accept it. I can fight it. Because if I don't I won't be the kind of mother she deserves. </div>
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Participating in the ACCEPTANCE blog hop on <a href="http://downwitdat.blogspot.ca/2013/10/welcome-back-to-t-21-blog-hop.html">Down wit Dat</a>.</div>
Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com7tag:blogger.com,1999:blog-6586234076318438189.post-27049847043680522522013-10-03T18:43:00.001-07:002013-10-12T20:16:46.216-07:00When we Slip and Slide - A Lament <div class="separator" style="clear: both; text-align: center;">
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Nope. No actual water in this post.</div>
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What <i>is</i> raising awareness? Is it asking people to realize that something exists? Is it factual information? Is it trying to wake people up to the reality around them? Or does it carry with it the connotation that there is something one should be aware of so that it doesn't sneak up on one, so that one is not, let's say, <i>affected</i> by a <i>condition</i>?<br />
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Lately, I've been having an increasingly difficult time with seeing raising awareness as something that results in a purely positive outcome. It is no longer enough for me to say that we need to move on from awareness, that awareness is fine and all, but that <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2013/03/why-i-do-what-we-do-and-then-some.html">we need to do more</a>. Now I have to go and question the whole idea of 'raising awareness' too. But then again, that's what I do: I can't just, for the sake of Frank and all of his penguin minions, accept things for what they are - good and pure and nice and not meant like <i>that</i>. </sarcasmfont><br />
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I always have to dig, wonder, question, and reflect.<br />
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Dammit, if I'm not just "full of hate" and "looking for things to be confrontational about." Ho hum. Yes, more sarcasm.<br />
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But October is <b>Down Syndrome Awareness</b> month. There will be many people who will be especially vocal about Down syndrome, many bloggers who will be doing a blogging prompt called 31 for 21, which essentially means that they'll be writing a post to <i>raise awareness</i> about Down syndrome every day of the month of October. I wish I had that kind of blogging energy or the inspiration, but there just isn't enough coffee or wine in this world for me to blog every day (also, there may be too much good stuff to read to actually produce any stuff of my own). I own that. <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2012/10/in-which-i-say-my-kids-frikken.html">Last year I managed one post</a>. This year I'm not even going to preface this post with a bunch of excuses. You all know I spend a lot of time just <strike>sitting</strike> <strike>chasing a wily toddler</strike> <strike>drinking</strike> <strike>thinking</strike> <strike>not cooking</strike> <strike>reading</strike> <strike>doing</strike> <strike>laundry</strike> <strike>resetting and degooifying the 'puter, the iPad, my phone, and the DVR</strike> living and being generally a big wet blanket, right?<br />
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I'm excused and can just harp from the sidelines. Awesome.<br />
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There will be many, many posts about Down syndrome. Countless cute, some not so cute, and maybe a few 'educational' photos. Lots of talk and stories, and the like. Plenty of dispelling of false or antiquated beliefs and completely wrong information. Some complaints. Many funny anecdotes and observations. Some facts, many should-be-but-maybe-not-exactly-are-facts, and perhaps a few beliefs and observations masquerading as facts. Still, lots of good, lots of community, and lots of love.<br />
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Love is always nice. Isn't it just?<br />
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But sometimes <strike>we</strike> I have to be contrary. Sometimes I have to embrace <a href="http://downwitdat.blogspot.com/2013/08/anger.html">my anger at the society</a> as a valuable tool, turn it into outrage, and challenge the very things I apparently should not be questioning. Because if things make us feel good, help us get by, or help to keep the boat from rocking, if they make us feel like "we're all in this together," they are beyond reproach. Huh? And questioning ideas written in stone as far as Down syndrome goes would just be mean and divisive and not beneficial to <i>the cause</i>. <br />
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It could fuck with the kumbaya.<br />
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Yeah. There'll be things in this month of blogging I want no part of. Because raising awareness - especially when this 'raising awareness' opens the door to pretty much anything one wishes to say about whatever that awareness is being raised about - does not necessarily promote meaningful inclusion, acceptance, or equal rights. Which, incidentally are<i> the</i> <i>cause</i> I'm interested in.<br />
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Awareness does not necessarily lead to acceptance. Ideally it does, but ideally I'd also be blogging every day this month to a receptive audience, and always have the sun shine when I need to get across the Target parking lot with a toddler and a couple dozen pounds of Halloween candy. And ideally I'd have no desire to eat said candy. Ideally my kid would just stick with saying the "no" when she doesn't want to eat something and skip the grand display of 'here, this is how much I will not eat this crap and will instead place it in your lap, on the chair, and on the floor'. Ideally.<br />
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But that's just not how stuff shakes out. Or doesn't. Egg stains, people. Egg stains.<br />
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Sometimes raising awareness about Down syndrome becomes about a heightened sensitivity to that which all too easily makes a person with Ds<b> the Other</b>, and worse yet, people with Ds a unified, homogeneous <a href="http://tap.sagepub.com/content/22/5/541.abstract">group Other</a>. Awareness of a condition can lead to the idea that people with the condition need to be <i>handled</i> or <i>dealt with</i> in a certain way, differently from those without the condition, and potentially to the notion of differing expectations <i>of</i> the people with the condition. Raising awareness about Down syndrome, <i>the genetic condition</i>, can easily <b>chip away at the individuality</b> of a person with Down syndrome, <i>the people who have this genetic condition</i>, by drawing on generalizations and sometimes even stereotypes, and by linking the condition with a person's identity to such an extent that the person's other identities will always take the backseat, if the observer is even willing to entertain identities beyond 'a Down syndrome person' to begin with. In reality, any awareness about Down syndrome focusing on anything specific (I use this word while understanding that there is nothing purely specific to Trisomy 21) regarding Down syndrome will naturally work to Other people with Down syndrome for the unaffected observer. Awareness can erode individual personhood by zeroing in on perceived commonalities and differences from the 'general populace' in a way that <b>directly and simply links them to that triplicate of the 21st</b>, instead of making all of the necessary connections, such as the connections to and considerations of intellectual ability, gender, upbringing, nationality, daily routine, age, height, placement in the order of siblings, religion, genetic makeup, ethnicity, social circles, hair color, education, physical ability, disposition, and countless, <i>countless</i>, other outside factors. I say 'outside', because the importance we attach to any of these factors, including one's chromosome count, comes from the 'outside', the social constructs at work in our environment.<br />
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My child does not enjoy music because she has Down syndrome. She enjoys music because she has existed since before her birth constantly listening to it, because I enjoy music, because she's been enrolled in music classes since she was 6 months old, because I sing to her, because her father sings to her, because her grandparents sing to her, because if I run out of avenues to entertain her I put on Baby Signing Time - the ones with all of the songs, because she sees that music makes the people around her happy and content and it's part of the celebration in our lives. Yes, the love of music is in her genes too, but she doesn't enjoy it because she has a third copy of the 21st chromosome. <br />
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Notice the difference?<br />
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Awareness can all too easily become about "Down syndrome things." It can slip from medical conditions <i>slightly</i> more prevalent in the population with Ds to complex behavioral patterns directly linked to the chromosome, insidiously enforcing Othering and, in the worst case scenario, allowing for medical professionals, far too quickly, to brush off valid medical issues that need attending to with "We often see this in Down syndrome," and simply resort to awareness instead of taking action (See what I'm doing here, making too simplistic a connection, a connection that kind of sounds like it fits and in a way it does, but when you really think about it hides behind it a much more intricate process?)<br />
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Granted, this looking at perceived commonalities can make us parents of individuals with Ds feel safe and secure in shared experience, but is it really worth it? Do I need 'support' and 'community' more than I need for the world to accept my child as is, without a laundry list of 'Associated with Down Syndrome'? Do I crave similarity and things made simple more than I do the adventure and acceptance of the unknown that is the individual life I lead? In reality, Down syndrome is not even a syndrome. It's a genetic variant called Trisomy 21, not a group of <i>co-occurring symptoms</i>. The <i>symptoms</i> of Down syndrome are after all such horrifying inflictions as a single palmar crease, epicanthic folds, impaired intellect, and other life-threatening abnormalities, none of which are present, <i>ever</i>, in the general population, but are always, <i>always</i> present in Down syndrome. There really should be a pill, you know. <br />
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Excuse me while I scream in frustration. Having to be <i>that</i> facetious and liberal with italics does that to a person, you know.<br />
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(There would be a really cool gif right here of someone notorious screaming, right after rolling their eyes, if I were able to create one. Or understood what gifs are, really. Next century, I swear.)<br />
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I like a nice community feeling, of course I do. Do I believe that having Down syndrome should naturally lead to membership in a community, a tribe? Is there anything so specific about Down syndrome that my child needs to have others in her life who also have Down syndrome, have a doll that has Down syndrome, or have her parents associate with other parents of children with Down syndrome? No. I do believe that there may come a time that my child will enjoy having friends who also have an intellectual disability, and/or will have a hard time keeping friends who do not have an intellectual disability, yes, but that doesn't have anything to do with Down syndrome specifically. There may also come a time that she will not want to play with some kids because they're not into playing 'zoo' or building with legos, and there might come a time she won't want to hang out with someone because all they speak about is the crappy music of the latest Justin Bieber, and, well, there's just more to life than tween pop.<br />
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I'll let her find her own way.<br />
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<i>Ideally</i>, I'd like to have her find it without having a certain type of <i>awareness</i> hanging over her head while she's trying to go up and talk to a kid, sign 'play', and then rip a ball right out of that kid's hands like that's what it means to share (true story, y'all). In the future, she might not always fit in because of how our society treats people with intellectual disabilities, but because of her Down syndrome? Only if we let it become synonymous with her identity.<br />
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<i>Ideally</i>, I'd like to be a part of a larger disability community as an ally. A community which unites because of how the 'able' population in society view and treat their disabled fellow humans, not because I'm interested in romanticizing the extra chromosome in my daughter's cells. A community that doesn't commiserate and isn't heavy handed with honey (and fundraising) when in fact vinegar is called for. <br />
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So while I celebrate my child in this month of October, it being her birthday month and all, and in all the other months, and while I have no problem whatsoever with Down syndrome in general, and my kid's Down syndrome which I wouldn't wish away in a million years, specifically, I wish we were part of a community that comes together as a resistance formed because of the segregation and oppression of those with Down syndrome, not a community that unwittingly sometimes contributes to the Othering of my child and <i>others like her</i> (See what I did there? That's how easily we slip and begin sliding...).<br />
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Anyhoo, who's in for a little overthrowing? I'm free most Saturdays and come with wine.Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com6tag:blogger.com,1999:blog-6586234076318438189.post-74555131236789523532013-07-29T05:58:00.000-07:002013-11-21T08:08:26.598-08:00Believe and liveI love <a href="http://www.huffingtonpost.com/2013/07/22/direct-action-disability-rights_n_3636511.html">this article</a> by Anita Cameron about different kinds of disability advocacy tools. She argues that nothing will ever get done without direct action. "Right on, right on," I say. I believe that too. Nice is not enough. But still, taking direct action implies we all know, <i>and agree on</i>, just exactly what we are fighting for. Right?<br />
<br />
So what is it? What am I doing here and elsewhere?<br />
<br />
For me it all comes down to acceptance, meaningful inclusion, and equality.<br />
<br />
None are currently a complete reality, but they all are the logical next step for humanity which evolves and progresses (and thus isn't on a crash course with some sort of an apocalypse). But most people don't seem to know that.<br />
<br />
We need vision.<br />
<br />
So much about all of this is vision. So much about this is expecting more than we think will happen, faster than we think anything will happen. It is expecting a large scale societal change and behaving as if this large scale change is imminent. Practically already here. Happening as I shout.<br />
<br />
It is about not getting discouraged and just doing what's best for my specific kid or myself, right here and right now.<br />
<br />
I don't want to only focus on the haters and the trolls, I want us to sway those who lazily vacillate, those who have good intentions, and those who just don't know any better. I want to scream our vision the loudest. To make it the all-encompassing truth, the reality, the now.<br />
<br />
I want to kill the positive stereotypes and the well-meaning misunderstandings about a 'mystical' chromosome. I want to stop allowing for <a href="http://utterlyunpublishedauthorsdaughter.blogspot.fi/2013/07/a-jerk-with-halo-and-some-shabby-wings.html">reductionism for inspiration's sake</a> because it is the lesser of two evils.<br />
<br />
In my vision the evil trolls will be recognized as the minority they are. Those closeted sociopaths. I'm not so worried about that anonymous, faceless person who spews his or her vitriol in an online comment to an article about a person with a disability. I'm more worried about my kid's future teacher, her friend's mother, my neighbor, and that guy who packs my groceries. I worry that they won't really believe in inclusion because they haven't experienced it, that they won't see it as the most logical thing to do because no one's told them that it is.<br />
<br />
I don't worry so much about hate as I do lazy ignorance. I don't worry so much about someone blowing off steam, than I do those minds who've never even really thought about people with Down syndrome or other disabilities as fellow human beings, because they're so used to understanding 'able is normal' as a fundamental fact, just because <a href="http://dsq-sds.org/article/view/1665/1606">it gets insidiously reinforced</a> at every turn. I worry about those who perceive people who are disabled as inspirational, marginal, apart, similar amongst themselves, and here on earth for purposes external to themselves, purposes other than living their individual lives. A <a href="http://utterlyunpublishedauthorsdaughter.blogspot.fi/2013/04/what-if.html">perceived unity</a> of the experience of disability concerns me.<br />
<br />
Most people follow, they adapt, they go with the flow. We, as advocates, need to define the current.<br />
<br />
We have an audience.<br />
<br />
We can set targets all we want and meet them, but unless we actively work to redefine the rhetoric - the way most people view disability and especially intellectual disability, language and all - we'll always have new targets, new ways of oppression, and the fight will never end. We can't just tackle the immediate, we need to reconstruct the foundation. Sometimes that involves peering inwards too, at our own world view and thinking. It has very much meant that for me, at least.<br />
<br />
There is a lot of discussion about being united and unified in our efforts, but how can we? We don't agree. For me there are things that simply cannot coexist if an <a href="http://utterlyunpublishedauthorsdaughter.blogspot.fi/2013/07/about-grief.html">ableist way of thinking</a> is to be dismantled.<br />
<br />
I can't be all "accept my kid as is, but in case you do figure out how to suck that extra chromosome right out of her very cells, please call us, we're interested." You can't say "my child deserves to be included in everything her peers are, but you know, if she gets bullied or we feel she's getting frustrated with learning math, relocate her into a nice self-contained location, <i>for her own sake</i>." We can never say "achievements and normalcy are arbitrary social constructs and we need to understand that, but hey, more therapies to help my struggling child the better, before she falls too far behind her peers."<br />
<br />
I will have to constantly examine my own thinking, my own language. Will it be my child who is frustrated, unhappy, struggling, or will it be me? Am I fixing my child for the world instead of the world for my child? When did a life of achievements become <i>the</i> life?<br />
<br />
We have to turn the tables.<br />
<br />
We have to say "There is no discussion. Inclusion has to be a fact as it is a practice that benefits all. Inclusion is the <i>natural state</i> of things. Through inclusion everyone's experience, everyone's life will be just that much more <i>normal </i>(pun very much intended), and everyone will be accepted as a member of the human race and society, with whatever that entails, attempts at peaceful coexistence and conditional love."<br />
<br />
We can't try to <i>sell</i> or <i>market</i> disability: "please accept my kid, she is not just a useless eater, she can <i>do</i> all of these things." Doing things isn't a precursor to humanity, being human is. We can't mystify or romanticize the chromosome and ascribe to it some specific, sometimes even supernatural-sounding traits or abilities: "Looksee here, that chromosome's special, if we eradicate it, we eradicate our pathway to the mysteries of cancer treatments or Alzheimer's." Three copies of the 21st chromosome are a part of 6 million people worldwide, and that should be enough to warrant general scientific interest. Or at least I'm going to act as if it is.<br />
<br />
I will believe it and live it.<br />
<br />
Disability is natural. Down syndrome is natural. It's about time everyone knew.<br />
<br />
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<div style="text-align: left;">
Participating in the <a href="http://downwitdat.blogspot.ca/2013/11/the-t-21-blog-hop-november-2013.html">Down Wit Dat </a>blog hop themed 'Autistic History Month' so really stretching (ignoring) the definition, but apparently 'advocacy' posts are welcome too. Maybe? This post sort of brushes on rethinking the world, which Autistic History Month is essentially about in its wish to write into history those previously ignored and rewrite the faulty parts. No? </div>
<br />Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com5tag:blogger.com,1999:blog-6586234076318438189.post-20878705691216412852013-07-18T04:51:00.004-07:002013-07-18T04:53:35.705-07:00The state of my advocacy. Or reflections on plants and outrage. I think lately the premise of this blog has been to sort out what it really is that I'm shouting so loudly for here, elsewhere on the internet, and in real life, what it is that I feel the need to get <i>out there</i>, and what has and continues to grate me about where we are currently. I have been mulling over what it means to be an advocate, what counts as advocacy, and who is a self-advocate. What needs to and can be done and by whom.<br />
<br />
Notions, I feel, that will mean the most for and in the future of my daughter and others with Down syndrome. <br />
<br />
I keep reminding myself of what James L. Cherney writes in his article <a href="http://dsq-sds.org/article/view/1665/1606">The Rhetoric of Ableism</a> in <a href="http://dsq-sds.org/about">Disability Studies Quarterly</a> regarding <i>ableism </i>as a fundamental way of viewing the world:<br />
<br />
<a href="http://dsq-sds.org/article/view/1665/1606"><span style="background-color: #fefefe; color: #111111; font-family: Arial, Helvetica, sans-serif; line-height: 22px; text-align: left;">"...naming and calling into question </span><em style="background-color: #fefefe; color: #111111; font-family: Arial, Helvetica, sans-serif; line-height: 22px; text-align: left;">the view itself</em><span style="background-color: #fefefe; color: #111111; font-family: Arial, Helvetica, sans-serif; line-height: 22px; text-align: left;"> raises the possibility of altering the very strands out of which the oppressive institutions are spun. Identifying the view as problematic adds a critical dimension to the struggle by denying the simplistic perspective that sees altering a few target structures as a solution to the problem. Naming the view exposes its pervasiveness, assumptions, and implications to criticism."</span></a><br />
<br />
This to me says it's okay to not let all flowers bloom, especially not the flesh-eating kind. Not everyone's truth needs or should be out there. That sometimes 'turning on the community' is just healthy discussion that strengthens the movement and hurt feelings are just that.<br />
<br />
I agree with <a href="http://badcripple.blogspot.fi/">William Peace on his blog Bad Cripple</a> when he writes:<br />
<span style="background-color: white; color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20px; text-align: left;"><br /></span>
<a href="http://badcripple.blogspot.fi/2013/06/a-cognitive-crip-strikes-back-big.html"><span style="background-color: white; color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20px; text-align: left;">"To get disability requires time, energy, and restructuring all of what one was taught.</span><span style="background-color: white; color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20px; text-align: left;"> </span><span style="background-color: white; color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20px; text-align: left;">Many feelings are going to get hurt if we people with a disability are ever going to become equal and free of bigotry. People who have dedicated much time and effort to support people with a disability will be hurt. That is those that have worked hard within a charity model of disability will be offended by the civil rights approach.</span><span style="background-color: white; color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20px; text-align: left;"> </span><span style="background-color: white; color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20px; text-align: left;">Researchers who dedicate their careers to cures for a host of conditions will be hurt (people like those involved in the exoskeleton or stem cell treatments)."</span></a><br />
<br />
I'm not a people pleaser. I use alienation like a weed whacker.<br />
<br />
I've thought about who the reader of this blog is and what they are taking away from what I write. I've struggled with whether everything is personal and up for discussion or whether there needs to be a clearer direction that might confront other directions. I've tried to zero in on what needs to be challenged and questioned and who is in the position to do that. Who it is I'm shouting at and who is shouting with me?<br />
<br />
I am and have been angry and outraged and I've been told that I'm unappealing because I swear or say divisive things, and then I've wondered whether those aren't the best things about this blog.<br />
<br />
They've meant I've found others who will rather make a wave than stay afloat. Waves are called for today. There is no reason for advocacy to be good-natured or diplomatic. Why should I change how I do things and occupy my space in the world just because I am the parent of a child with a disability?<br />
<br />
I have also struggled with the surprisingly-present in the Down syndrome parent community, notions of legitimacy, seniority, involvement, and perceived authority or expertise. And then there are the recent additions of transparency of motivations and personal goals. I find the latter hard to fit into my view of advocacy.<br />
<br />
Most times I think: "Fuck it, I'll write what I want."<br />
<br />
Most times I write because I'm pissed off. For my kid. For her.<br />
<br />
What do I want to achieve with my advocacy and how? What will I emphasize in raising my child with Down syndrome. How will I address advocacy in our everyday? Will I need to and should I?<br />
<br />
I want people to halt when they see inspirational porn and dismiss it as insulting. I want people to read an article about a doctor having 'suppressed' the third 21st chromosome in a petri dish and ask themselves what the implications are and whether this isn't a problematic development. I want people to look at my kid and never ever flinch or ask me what her condition is or whether she's able to do xyz. I want my kid to be able to create for herself the life she wants to without anyone setting limitations on her because of her diagnosis. I want her to be able to succeed and fail without neither being perceived as somehow related to the chromosome. I want to not feel the need to write a blog about Down syndrome because I feel pissed off at the media, society, history, strangers, institutions, parents, or other advocates.<br />
<br />
I used to bitch about the narrowing width of airplane seats for chrissakes. Those were the days. <br />
<br />
And the most important question of all:<br />
<br />
Why don't I write more specifically about Babe? She is totes adorbs after all. It would create awareness. It would show people that "We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay," instead of me just saying it right there on the banner. <br />
<br />
Because now, as an adult, I wouldn't want to read about my child self on the internet.<br />
<br />
What's your take on advocacy? What about flowers, especially the flesh-eating kind? Should we be catching more flies with honey or is there a danger in imperfect alliances to further obscure the root cause of injustice? Want to discuss this over a bottle of wine?<br />
<br />
What do you think?Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com10tag:blogger.com,1999:blog-6586234076318438189.post-13089430302313967722013-07-04T22:58:00.000-07:002013-07-04T23:28:31.761-07:00About GriefAnd how deep the Rhetoric of Ableism runs.<br />
<br />
In my life I love. I laugh. I get angry. I get bored. I whine. I rejoice. I joke. I drink too much coffee and wine. I yell at my husband and at the computer for daring to behave differently after the latest software upgrade (the 'puter, not the husband). I dance and sing and eat burgers with gusto.<br />
<br />
Sometimes I cry when someone's a total ass towards me and sometimes I fight back. Most times I hang out with my family and friends and just bathe in the happiness and joy.<br />
<br />
I enjoy my life. I'm happy and content. I'm where I want and wanted to be. I enjoy my life.<br />
<br />
Yesterday I read <a href="http://www.huffingtonpost.com/jamie-krug/grieving-for-the-other-owen_b_3526763.html">this article</a> on Huffington Post about grief. It's a personal account and a parent's take on something that gets tossed around in the Down syndrome community a lot, namely 'grieving the child you thought you were going to have, to be able to enjoy the child you did get'. To me personally this exercise has always been pointless at best and incredibly insulting at worst. So I wanted to comment thusly:<br />
<br />
<span style="background-color: #f2f2f5; font-family: Arial; font-size: 13px; line-height: 17px; text-align: left;">"I am also a mother to a child with special needs and while I support you and understand you as a fellow parent and as a human being with a specific experience I also feel to need to bring to your attention that your experience is by no means a universal one. In fact, I often consider an experience such as yours, which is by no means invalid in any way, brought on by compliance to a rhetoric created for the mainstream, *only* for the mainstream. A rhetoric that never questions what it means to be human, what it means to have value and worth or have a valuable or a worthy life. What it means to be happy. Why we're so driven to attain a level of accomplishment, of development for our children. What is normal and how is it defined and where does the concept derive from? I know there is a whole world out there that does not define success by milestones or worth by 'closeness to normalcy'. There is love and diversity and a movement that allows for difference that doesn't define, but enhances. </span><br />
<br style="background-color: #f2f2f5; border: 0px; font-family: Arial; font-size: 13px; line-height: 17px; list-style: none; margin: 0px; padding: 0px; text-align: left;" />
<span style="background-color: #f2f2f5; font-family: Arial; font-size: 13px; line-height: 17px; text-align: left;">I feel we cannot change things for our loved ones (or for ourselves) unless we let go of what has been arbitrarily defined and create anew. Lets change the world for our children, not our children for the world.</span><br />
<br style="background-color: #f2f2f5; border: 0px; font-family: Arial; font-size: 13px; line-height: 17px; list-style: none; margin: 0px; padding: 0px; text-align: left;" />
<span style="background-color: #f2f2f5; font-family: Arial; font-size: 13px; line-height: 17px; text-align: left;">Much love to you and yours."</span><br />
<br />
I always feel compelled to say something when it seems like a major news outlet is picking up 'a story' I and many other advocates refer to as <i>misery peddling</i>, when the struggle they pick up on is not the struggle for equal rights, inclusion and acceptance, but the struggle of a caregiver to get over their shock and horror at a disability. This article in Huffington Post is by no means unique, it is the latest in a long, long line of articles discussing depression, jealousy, and even thoughts of suicide when facing one's child having a disability.<br />
<br />
I guess misery sells. I guess overcoming something insurmountable (oh please) sells. I guess someone finally being able to love a kid who (gasp) has an intellectual disability is the stuff for inspiration and appreciation of one's own life. Who knows?<br />
<br />
But the person who wrote the story responded:<br />
<br />
<span style="background-color: #fffcdc; font-family: Arial; font-size: 13px; line-height: 17px; text-align: left;">"While I appreciate your perspective, I believe that the world you speak of and hope for is a utopia of sorts and unfortunately unrealistic in present day. Without milestones as a yardstick, parents would not know whether or not their children were falling behind in things like walking, talking, etc. Those milestones signal proper development and the lack thereof signals a need for assistance such as therapy. This is not to make these children "normal" for the sake of society, it is to allow them the opportunity to grow to reach their potential - whatever that may be. For example, if a child is not identified with a neurological or physical disability and then treated quickly enough, there is a possibility that they may not be able to walk. They would certainly have value and be considered worthy of life either way, but having the ability to walk (rather than be confined to a wheelchair or walker) would arguably bring them more opportunities and and general ease throughout their lives. I'm not sure it is fair to our children to ignore societal norms - regardless of how "arbitrary" we may think they are. Until we can change the perspective of everyone in the world, the best we can do is create realistic and hopeful expectations and a loving and supportive environment for our children and the people around them. J."</span><br />
<br />
I nearly passed out.<br />
<br />
Every once in a while there's something that just leaves me completely hopeless. Leaves me wondering why I keep doing what I'm doing when one of 'my' people - fellow parents, family members of people with disabilities, and self-advocates - with me at the barricades fighting for that better, more equal and accepting world, turns out to be fighting a completely different battle.<br />
<br />
When they are not fighting <i>for</i> acceptance, but <i>to</i> accept.<br />
<br />
It hurts when concepts such as '<i>proper</i> development', '<i>treating</i> a neurological or physical disability', being '<i>confined</i> to a wheelchair' and 'societal norms' are touted as facts and something that should go unchallenged. That the only body and mind worth having and the only body and mind that will give 'opportunities' in life are the kind of body and mind that have no impairments.<br />
<br />
<a href="http://dsq-sds.org/article/view/1665/1606">The rhetoric of ableism</a> goes unquestioned, and has become the baseline. It hurts.<br />
<br />
My child is not a project. She's my child. I don't want to try to 'fix' her to measure up to some arbitrary yardstick or adhere to some societal norm that's really baggage in disguise. Instead of saying "How high?" I want to ask "why?"<br />
<br />
The world is my project, even if I can't change it in my lifetime, at least I'm trying to make a difference, a change for the better for <i>everyone</i> in the future.Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com4tag:blogger.com,1999:blog-6586234076318438189.post-48258172761240926272013-07-02T18:02:00.000-07:002013-07-02T19:33:10.789-07:00A Jerk with a Halo and Some Shabby Wings(Should I throw in a clown nose while I'm at it? Purpose? Opposable thumbs? Scars or tattoos? Experience? A theme song like way back on Ally McBeal? Love? Some kneepads and a helmet? Resentment? Common sense? Or a winning smile?)<br />
<br />
What <i>are</i> real people made of? What are stereotypes made of?<br />
<br />
My favorite article ever written about a person with Down syndrome is titled '<a href="http://www.xojane.com/family/down-syndrome-with-alzheimers">People with Down syndrome can be jerks too.</a>' To me this article and especially its title speak of great things. Although a personal story, the article offers to me a glimpse of a society that might just be able to see people with Down syndrome as individuals. As multifaceted, whole people who experience varied emotions, and whose actions are fueled by just as obscure, overt, honorable or selfish motives as yours or mine. People with agency.<br />
<br />
Seems so simple yet it's not. <br />
<br />
The article speaks to me of a potential for a complex inner life that is often incredulously denied people with intellectual disabilities.<br />
<br />
Not a radical thought though, this complex inner life, thought processes, a reasoning beyond pure instincts, wants, and needs. Complex motives.<br />
<br />
That stuff that makes you justify having a hamburger for lunch even though you'd sworn to yourself that same morning that you'd get a salad and start a new life, that makes you hate your job while you're thankful for your career, or kill a spider while carrying the ladybug safely outside. That stuff that allows you to pass that guy on the street who's waving around a sign asking for money for food without batting an eye and then pay $4 for a coffee you end up not drinking. That stuff that makes you fundraise for an animal shelter while wishing that your mother in law's driver's license will not get renewed so that she can't visit so often. That stuff that makes you hate someone you desperately love.<br />
<br />
We can all be saints or jerks, towards ourselves and towards others, sometimes in the same moment. Sometimes we act on impulse, other times we carefully weigh our options. We make small decisions in everything we do that are guided by a complex mess of everything.<br />
<br />
Life. We neurotypicals live it and more often than not aren't asked to explain ourselves, yet the general assumption doesn't seem to be that we acted on pure instinct, or based on some all-encompassing motivation. And even if we did, most times that specific instinct or motivation won't be seen as all we have or are, as our basic existence.<br />
<br />
However, often, almost without anyone realizing, people with intellectual disabilities are dismissed as not having that complex mess and are flattened to a few basic emotions or motivations. People with Down syndrome are reduced to that one extra chromosome in ways that most of us never even think about. Little things. Insidious thoughts. Good intentions.<br />
<br />
<i>Closer to God in their innocence</i><br />
<br />
<i>The 21st is the chromosome of love</i><br />
<br />
<i>Not an evil bone in the body</i><br />
<i><br /></i>
<i>Unable to tell a lie</i><br />
<i><br /></i>
<i>Sweetness personified</i><br />
<i><br /></i>
<i>Here to teach us what life is really about</i><br />
<br />
If people with Down syndrome are not reduced to monsters as has been done in the past (hello Aristotle, you half-assed theoretician), then they're often reduced to <i>special</i> people, halo and angel-wings firmly attached.<br />
<br />
Reduced nonetheless.<br />
<br />
Subhuman or superhuman, both exist on the margins or outside of society. Only partially included or segregated and grouped together, perhaps excluded. Denied of an average, everyday, mundane existence, complex mess and all - the kind of existence many of us have and refer to as <i>happiness</i>. Disabled by society and its perceptions.<br />
<br />
By a society whose <a href="http://dsq-sds.org/article/view/1665/1606">rhetoric of ableism</a> has become so ingrained into us, into our thinking, our worldview, our language, and our understanding, that even many of us advocates never pause to challenge or question it.<br />
<br />
We don't lead in our thinking and rhetoric, we scramble to have those we advocate for lie in this bed we've made without wondering when the last time was anyone changed the sheets - and those sheets are <i>in serious need of changing</i>.<br />
<br />Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com7tag:blogger.com,1999:blog-6586234076318438189.post-15262104777124750992013-06-14T13:35:00.001-07:002013-06-14T14:09:00.386-07:00Dear expectant parent with a prenatal Down syndrome diagnosisI won't say that I know how you feel, because I don't. No one does.<br />
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To say that, would be unfair and dismissive of your feelings. It would suggest that my path would be your path too, when the truth is that there is no one solution. No one way.<br />
<br />
However, what I can say is that I've been where you are now and that you are not alone.<br />
<br />
I too was presented with a diagnosis. Mine came at 13 weeks of pregnancy, in the form of a grainy copy of <a href="http://downsyndrome.about.com/od/diagnosingdownsyndrome/a/FISHarticle.htm">FISH results</a> from a <a href="http://www.mayoclinic.com/health/chorionic-villus-sampling/MY00154">Chorionic Villus Sampling</a>. A couple of dots on a chart highlighted with neon-yellow. One line of text on the bottom.<br />
<br />
"Female with <a href="http://www.ds-health.com/trisomy.htm">Trisomy 21</a>," the paper said.<br />
<br />
It wasn't a big surprise. My husband and I had agreed to the CVS because <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/p/i-refuse-to-call-this-birth-story.html">an ultrasound had revealed that the fetus, my daughter, had edema and there was a cyst on her neck</a>. The doctor was almost certain there was a chromosomal variation.<br />
<br />
I had asked the doctor about termination and my rights (we were living in Mexico) prior to receiving the specific results, and in that smallish conference room with someone's laptop charging in the corner, I was presented with a choice: My daughter had Down syndrome and I could either terminate the pregnancy or continue. <br />
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The doctor would support whatever decision we made and either organize an abortion or bring in a geneticist.<br />
<br />
To say that there was no choice for me, would be to tell a lie. I am pro-choice. I try to live ethically and with compassion. So I weighed my options. I was happy to have a choice. An <i>informed</i> choice. I considered and still consider myself one of the lucky ones. Not every woman gets to decide over their own body and life. I know I'm privileged. <br />
<br />
In the week that had passed from the ultrasound to receiving the diagnosis, I had read everything I could find on Turner syndrome, Trisomies 13, 15 and 18, Cystic Fibrosis, and Down syndrome, although I'd felt I was already somewhat aware of the realities related to the last possibility. For my husband and I there was no fear, no unknown, just a fork in the road. Together we made a decision.<br />
<br />
We, the adamantly atheist, educated, and rather rabidly pro-choice couple, felt that life with Down syndrome was no better or worse than a life without. Our daughter's life would be what we and she made of it - good, bad, brilliant or not, only time would tell.<br />
<br />
We had decided we wanted to have a child. For us, that child having Down syndrome did not change our intent. I had read enough to know that life could and would be good, as normal as it ever was going to be for us, strange, unprecedented, wonderful, mundane, awkward, boring, exceptional, and everything in between. <br />
<br />
Somehow, her having Down syndrome just added to the idea of her unique existence. While we were aware of the list of <a href="http://www.mayoclinic.com/health/down-syndrome/DS00182/DSECTION=complications">potential health issues related to Down syndrome</a>, we were even more keenly aware of the fact that life in itself came with a laundry list of potential health issues, and that no one had ever escaped living without dying. Eventually. We understood that intellectual disability and developmental delays had nothing to do with worth, value, humanity, or what it means to be happy or lead a happy life.<br />
<br />
We still feel the same.<br />
<br />
I will not insult your intelligence by telling you that this diagnosis doesn't change the premise of your pregnancy or try to convince you that it shouldn't. Your mind might have already gone from wanted to unwanted. What I will tell you however, before you decide one way or the other, is that you should do so only after trying to understand what it really means to have a child with Down syndrome, and more importantly, <a href="http://www.ncbi.nlm.nih.gov/pubmed/21910246">what it means to have Down syndrome</a>, what your child's life could and would be like. Look beyond the stereotypes, the list of 'what could go wrong', and the ignorance of those who will tell you that you'll end up with a child who'll never grow up. Attempt to find the reality. <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2012/06/happy-but-not-go-lucky.html">It's worth it, I swear</a>.<br />
<br />
What I will also tell you is that I know of no better feeling than the love I have for my kid, the feeling I get when she laughs at my singing, the warmth of her hand in mine when she's reaching for something new she's not quite sure about, the pride I have in her when she trots out into the world, fearless and fierce, and makes that world hers. She is everything to me and her father. She is the coolest, most excellent person I have ever met and I doubt that'll ever change.<br />
<br />
She is our love. In her I found the meaning of real, earth-shattering love. But only because she is mine.<br />
<br />
May your life be as happy as ours.<br />
<br />
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Life just... <i>is</i>.</div>
Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com4tag:blogger.com,1999:blog-6586234076318438189.post-66607355204472269702013-05-15T14:07:00.001-07:002013-05-15T14:24:17.899-07:00Modern Day Monstrosity <br />
In the past few weeks I've been told that I'm a "pearl clutcher", that I should just "untwist my panties", and that I'm being "too sensitive" when I haven't felt that insults and belittling expressions, <i>retard</i> and <i>tard</i>, should have a place in our everyday conversations. I've also been called a "fucktard" for (politely) objecting to the word "douchetard".<br />
<br />
Nice. I know. Makes me feel all warm and fuzzy about my fellow human beings. Yup. Makes me feel heard and appreciated as a person. And makes my kid feel like a valued member of a society that cares about her. Like <i>she</i>'s loved and appreciated, and that she belongs. Makes her feel like a part of this great adventure, and not at all like a despised outsider.<br />
<br />
Because someone thinks that saying fucktard will get him more laughs than saying fuckdink? Or because someone feels so strongly that the person they were ripped to pieces by needs to be called a douchetard and not ever a douchecanoe? Or because a person is so unimaginative that they cannot make a Palin joke any other way than referring to her as retarded? <br />
<br />
What is this love affair with one word? Why are people so ready to defend their use of it? If you're out to insult someone, as seems to be a popular pastime, why not get creative? Why choose the one word, in any of its permutations, that singles out an entire group of people, a group that already has it pretty damn hard in today's society, and represents the members of that group as<br />
<br />
mistakes<br />
slow<br />
broken<br />
despicable<br />
unfortunate<br />
disgusting<br />
strange<br />
funny, but not the good kind<br />
and<br />
less than everyone else on this earth.<br />
<br />
Because that is the long and short of it. It is language of oppression, hate, and discrimination. It is. It does not matter how much you are not pointing at my child when you use the word, you're still demeaning <i>her</i>, and others who have intellectual and developmental disabilities. <br />
<br />
It does not matter that you also have a child with a disability but are not bothered by the words unless they are directed at your specific kid. You are aiding the language machine of inequality by not speaking up and attempting to make a change.<br />
<br />
No matter how much we wish to do so immediately, the word 'retard(ed)' and its permutations cannot yet be understood as divorced from the concept of intellectual disability. A better case can be made for former classifications: idiot, moron, imbecile, but even they now carry added meaning, at least for this mother. There is no way for the parents to 'own' or 'take back' the offending word for their children. Someday, doing that may be possible for people with I/DDs, but as for now, they're not interested.<br />
<br />
I know there are many things that need to be done and achieved for true equality. Things that require lobbying, funding, legislation, and hours upon hours of activism and advocacy. However, I also know that a change in our everyday language, and viewing certain types of language not as "free speech" but as language of oppression and hatred will help to undercut the persisting bias to see people with Down syndrome, or any intellectual disability as not quite human enough to be <i>worth our trouble</i>.<br />
<br />
Again. I'm not asking for your money or even your time. I'm not asking for you to like <i>me</i>, or even be considerate of <i>me</i>. I'm not clutching my pearls in horror and asking you to stop swearing. I'm not being the "word police" or treading on your "rights". I'm asking for the tiniest, smallest speck of respect for a huge group of people. For your neighbor, that boy in your kid's school, your sister, your colleague, the driver behind you, that girl on Glee, and for a group of people that you might one day be a part of. <br />
<br />
This is not about my sensibilities.<br />
<br />
Make a choice. Use language of equality. Teach your kids that language has power. Weigh your words. There may come a time someone needs to be called a giant bag of assholes, and that's just fine. Assholes won't mind. And people with intellectual disabilities will not be the butt. <br />
<br />
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My kid. Leading the charge.</div>
Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com5tag:blogger.com,1999:blog-6586234076318438189.post-10611629728874550362013-05-10T11:12:00.000-07:002013-05-10T14:08:12.823-07:00I recant. Yes, it happens."So what do you do?"<br />
<br />
"Oh, I, uh, parent. Yeah. I'm a mom."<br />
<br />
Once she was born, everything else went out the window. I embarked on the greatest adventure of my life. After a half lifetime of touring the world and putting myself (and whoever was with me at the moment - hello and subsequent sorry, Viking husband) in situations that no Finn, especially one who doesn't know that opinions do not always have to be voiced out loud, or even hinted at with disapproving or otherwise eyebrows, should be putting themselves in, I became a mom.<br />
<br />
To Babe. Who's like the bees knees, pixie dust, the bestest ever antidote to any mellow-harsh, and all of that cool stuff that I thought didn't even exist. She's the shizz and the sha-zam, and pretty much all the awesome magnificent I can think of. So ya, she's it.<br />
<br />
Totally.<br />
<br />
Before I had her I was one of those people who praised new moms for not letting the fact that they'd procreated change "who they were".<br />
<br />
And I realize that is a capital offense.<br />
<br />
Right. I apologize. I'm sorry. That's such a fucking nasty thing to assume or say. To think that what you are without children is the person you are, and should be, even after a life-altering event? I should have known better. I mean, I went about preaching how wonderful change is which just made a me a giant hypocrite. Apologies again, folks. Don't hate me. I understand now.<br />
<br />
Of course the love of your life's going to rock you to your foundation. Change you for the better. Make you see the world in a new light, more than once each day, as a place that your sweet one will also exist and develop in. (Plug: Should you feel compelled to, now that I've apologized and everything, change the world for the better for my kid and for all people with Down syndrome, sign <a href="http://www.change.org/en-CA/petitions/attorney-general-of-maryland-doug-gansler-launch-an-independent-inquiry-into-the-death-of-robert-ethan-saylor">this petition</a>, please.)<br />
<br />
I now have a permanent ponytail for easiness, a back yard with actual grass and a sand box, and a red minivan with a top of the line car seat in the back seat. <i>Rear-facing. Still. For ultimate safety</i>. <br />
<br />
And it's all still adventurous, and new, and something extraordinary. Every second of it.<br />
<br />
So what I'm trying to say on this Mother's Day is that I apologize for being a childless jerk before. For not understanding that this change too that enables one to talk about poop (especially the rogue kind that makes its way into a shoe in the closet somehow), bedtime routines, and Caillou, and find those discussions fun and enjoyable (unless they're about Caillou and then the general sentiment seems to be that <i>enuf is enuf</i> already), is good change too.<br />
<br />
It's not regression, or an insult to feminism. It's another adventure in a string of adventures that at least my life is made up of. Motherhood's the works, man.<br />
<br />
Happy Mother's Day to all and all a good convo on poop.Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com3tag:blogger.com,1999:blog-6586234076318438189.post-16524810270282763732013-05-05T18:07:00.003-07:002013-05-07T18:52:11.510-07:00'Twisting it out of wire' means you really should have gotten this by nowI have been struggling with a post about my everyday advocacy that would mention my hungry offspring, a jar of strawberry baby puffs, <a href="http://www.change.org/en-CA/petitions/attorney-general-of-maryland-doug-gansler-launch-an-independent-inquiry-into-the-death-of-robert-ethan-saylor">Doug Gansler, the Attorney General of Maryland</a>, <a href="http://www.fredericknewspost.com/news/crime_and_justice/police/article_4c6c4bdf-22cb-58d7-9aad-e0d0a2578cd1.html">Sheriff Chuck Jenkins</a>, <a href="http://www.change.org/en-CA/petitions/attorney-general-of-maryland-doug-gansler-launch-an-independent-inquiry-into-the-death-of-robert-ethan-saylor">a worthy petition</a>, and <a href="http://downsyndromeuprising.blogspot.com/2013/05/press-release-activists-mobilize-to.html">a press release</a>, all in one sentence.<br />
<br />
<i>Please click on the links and do the world (and my kid) a solid. Thanks.</i><br />
<br />
But it's just not going to happen. There's something more pressing that's fighting its way out of my rambling mind to be put down in what will hopefully end up being a more coherent string of words than what I usually achieve.<br />
<br />
Could happen? There's got to be a first for everything.<br />
<br />
Today I wish to talk to you about making a change in the world. Not just how I go about it in my everyday (yup, still linking this to the <a href="http://downsyndromeuprising.blogspot.com/2013/05/down-syndrome-uprisings-advocacy-blog.html">Down Syndrome Uprising advocacy symposium</a>), but how change truly happens, or actually, how<i> I</i> think <i>we</i> could be <i>better</i> at making it happen.<br />
<br />
I'm looking at you, <a href="http://capwiz.com/ndss/issues/alert/?alertid=62616056">National Down Syndrome Society</a> (NDSS), and you, <a href="http://ndsccenter.org/news-eventsresponse-to-the-tragic-death-of-robert-ethan-saylor/">National Down Syndrome Congress</a> (NDSC).<br />
<br />
<i>This is what happens when you don't answer my mails. Just saying.</i><br />
<br />
In order to make a change in the world we first have to identify what it is that we wish to change and then figure out how <i>we</i> can be the change we wish to see in the world.<br />
<br />
Right? I'm sure I've seen stuff like that on a bunch of Facebook memes. Seed of truth and all that...<br />
<br />
Totally. It is all about us. How we approach this. How we act in public. How we come across. The kind of example that we as parents, familiars and representatives set. And I'm pretty sure there are at least a few self-advocates out there who have <a href="http://www.youtube.com/watch?v=sanHX8-GNWY&feature=youtu.be">strong convictions about how they like to be treated and talked about</a>. <br />
<br />
I'm sure we can all agree that the current perceptions about people with Down syndrome many folks out there have are hardly ideal. There's a lot of work to be done, sure. Lots of targeted education, legislation, and funding to deal with to make an actual change. I get that.<br />
<br />
But I also get that we need to lead by example. We need to be the change. We need to think in a new way. We can't be bogged down by how the current society views people with Down syndrome and other intellectual disabilities.<br />
<br />
We need to be different. We need to be advanced. We need to to think the way that we wish everyone thought. We need to stop apologizing and start taking charge. We need to be the change we wish to see.<br />
<br />
NDSS and NDSC, I'm giving you the benefit of the doubt and will continue to believe that you actually wish for a change, although it's not exactly apparent in your behavior of late.<br />
<br />
We need to talk the talk.<br />
<br />
Language is key. We don't only wish for people to stop using the r-word, or Down syndrome as an insult, we wish to be so forward thinking that we get to equality with language.<br />
<br />
We have to stop apologizing for the existence of people with Down syndrome, as if they were a population distinguishable by strange, specific to the syndrome, behaviors, and completely unknown health conditions that are never seen in the population at large.<br />
<br />
<b>We all</b>, as in the people with Down syndrome and their parents, families and friends, <b>know that there simply are no behaviors or health conditions that are purely found in relation to Down syndrome</b>.<br />
<br />
Maybe, and I'm just spitballing here, we should let the world in on this specific nugget of information? Maybe we shouldn't talk about "<a href="https://www.facebook.com/dsadvocates/posts/450216381720009">people with intellectuals [sic] and developmental disabilities who live in the community who often display language difficulties, unusual behavioral [sic] or an inability to react <i>normally</i> in an unusual situation</a>." (my emphasis) or how our attention needs to be focused on training of law enforcement and first responders "<a href="https://www.facebook.com/dsadvocates/posts/450216381720009">on dealing with people who present the challenges faced by individuals with disabilities.</a>" We should maybe also steer clear of making people with Down syndrome out to be people "<a href="http://www.ndss.org/About-NDSS/Newsroom/Recent-News/An-Update-on-NDSS-Actions-in-Response-to-the-Death-of-Robert-Ethan-Saylor/">who may not respond in a way that the personnel are familiar with or have seen before</a>." I mean, sometimes people react in ways that may be seen as unconventional, or unexpected, but that is a part of human contact and happens to all of us, not just people with disabilities. And again, seriously, I doubt that a person simply by virtue of having a disability can be so much more creative than the rest of us, that they will create a behavior, now in our time, that has never ever been seen before. My daughter's a wily little inventor alright, but even she has her limits.<br />
<br />
Maybe it's just me, but I don't want to go out there and tell my surroundings: "Hey you, expect <i>strange</i> with my kid, cause, you know, she's <i>abnormal</i> and all."<br />
<br />
I can't believe that I have to spell this out. In 2013. Sheesh.<br />
<br />
I'd rather go out and be all like: "Hey you, I know you might not realize that my kid is just as human as you, but she is, so treat her like you'd want yourself or your loved ones to be treated. Understand that her reactions and actions have value and stem from the specific situation and her personality, not Down syndrome, and they don't require some specific procedure to be 'dealt' with. Be a human. Communicate with her." <br />
<br />
To put it succinctly, as I've done in a number of unanswered emails to especially NDSC (since they are the organization behind most of the quotes above), we cannot use language or perpetuate images and thoughts that stigmatize and/or marginalize people we represent further.<br />
<br />
We have to be forward-thinking. We need to be progressive. We need to see beyond the current reality, into the future, into what should and will be. We need to realize sooner than later that a person with Down syndrome having the right to be seen as an equal member of society should not be a radical idea.<br />
<br />
We must not shoot ourselves in the back, or in the foot, or, well, anywhere. Actually, let's keep away from shooting, period.<br />
<br />
Let's represent. Let's be cool and let's be the change we want to see in the world. Change begins with a thought. We have to fake it till we make it. If we build it, they will come.<br />
<br />
Now.<br />
<br />
Enough with the clichés already, let's do this!
<br />
<br />
<br />
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Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com3tag:blogger.com,1999:blog-6586234076318438189.post-46561515305907132842013-04-20T10:25:00.000-07:002013-10-12T20:17:50.942-07:00What IfIf you are a parent you probably know how profoundly this thing we call love for our children also spells constant worry, guilt, fear, feelings of inadequacy, and holds close to its very core the terrifying potential for bottomless grief.<br />
<br />
While parenting might mean eskimo kisses and early morning warm cuddles, drawings on the fridge, tiny participation awards on the mantle, soft sobs that only your arms can make disappear, intense pride and joy, laughter that plays a never-before-played chord, and boogers that kind of look like a dog (and that don't really gross you out), there are also desperate nightmares about college funds, meaningful time, birthday invitations and popularity, happiness, correct nutrition, homework, following dreams and what those dreams might turn out to be, scraped knees and elbows that could have been so much worse, turning out 'well', and much more, that often, especially late at night, can seem almost overwhelming.<br />
<br />
But your laundry list of concerns that keep you up at night probably does not include the worry that your child will not be seen as fully human by their peers and by the society they are growing up in.<br />
<br />
Unless your child is also part of a population that is marginalized and that there are widespread, so deeply ingrained and accepted prejudices about, that more often than not they're regarded as opinions, sometimes even as the truth. As evidenced by <a href="http://parenting.blogs.nytimes.com/2013/04/01/outlawing-abortion-wont-help-children-with-down-syndrome/">the comments to this post</a>, which the person who runs this blog calls "opinions" and "valid discussion". <br />
<br />
My child is often marginalized and dehumanized.<br />
<br />
How does a person exist in a society as fully human, and as an equal when they are constantly told by everyone, even their own community, that they are part of a marginalized, yet homogeneous group, a group of which blanket statements and assumptions can be made and spread as <i>expertise</i>?<br />
<br />
Would that situation frighten you?<br />
<br />
It frightens me.<br />
<br />
The world at large seeing my child as somehow <i>too different</i>, <i>defective</i>, or <i>less than</i> keeps me up at night. It takes me away from my family in my need for tangible change while I read yet another article on <a href="http://gardenofmyheart.wordpress.com/2013/04/12/uncomfortable-truths/">Robert Ethan Saylor</a> and plot a better tomorrow for everyone. <br />
<br />
But that fear of her being taken away from me is never far either. After all, we've been close to that edge once already. That fear becomes even more pronounced, at times overriding the fear of my child not being seen as fully human, especially when something like what happened to Ethan happens.<br />
<br />
A whole community of parents, loved ones, and people with Down syndrome is shaken. Shaken to the point where many feel like something needs to be <i>done</i>, this mother included.<br />
<br />
So I understand the need to grab hold of anything that somehow seems like a solution. A powerful 'if only'. Something that just might tell a terrified parent that what happened to Ethan was an isolated incident and the result of something that is amiss, but that can be easily rectified.<br />
<br />
'Down syndrome specific training' is born.<br />
<br />
I applaud the community for attempting, for once, to come together to address this situation. I admire anyone's fierce passion for their children, I have much in store for mine. I understand the need to make everything better, to have a goal, and to make something positive came out of a horrifying sequence of events that never should have unfolded to begin with and that continue to haunt us because in lieu of an independent investigation there has only been an internal investigation. The need to make sure Ethan's death is not in vain resonates with me. I could never disagree with a parent's love for their child and their need for safety and security for that child.<br />
<br />
But I have to look at the bigger picture. I have to look at the repercussions of the public discourse on Down syndrome specifically and intellectual and developmental disabilities more broadly. I have to look at this training, something I normally see as a positive, as education, within the scope of the constraining and limiting 'Down syndrome specific' epithet. I have to plot in how exclusion and separation from the general population by recommendations, protocol, or legislation will affect what I wish for my daughter and all people with Down syndrome - inclusion, acceptance and equality. I need to understand what happens to prejudices and stigma, while education and training on such, in reality truly specific subjects, as 'delays in processing' or 'heart conditions' are brought under the Down syndrome condition umbrella. I need to assess how detrimental such notion as having a "Down syndrome specific interaction" or addressing "specific health and behavioral concerns associated with people with Down syndrome" will be to perceptions of others regarding the individuality of a person with Down syndrome.<br />
<br />
I need to be true to my heart and the one who calls me mom.<br />
<br />
Exclusion by way of creating a standard that is separate for those with Down syndrome, if that were even possible for such a diverse population, is not the kind of legacy I wish to create for my daughter, or anyone with Down syndrome. I wish to create a legacy that challenges bias, stigma, and prejudice, and that celebrates diversity while understanding that Down syndrome in itself is not diversity but that diversity is born from individuality. <br />
<br />
The only Down syndrome specific training that I can support is training that completely challenges the existence of anything 'Down syndrome specific' and focuses on people with Down syndrome as people, as individuals, as equal members of society with equal rights. That training I will champion.Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com5tag:blogger.com,1999:blog-6586234076318438189.post-48155442756570268252013-04-02T21:43:00.001-07:002013-04-02T21:45:00.899-07:00AntidoteI don't want to write about <a href="http://downsyndromeuprising.blogspot.com/2013/03/call-to-action-robert-ethan-saylor.html">Robert Ethan Saylor</a>.<br />
<br />
I don't want to write about how he cried for his mother right before he died. I don't want to write about how the people whose actions left him dead are already back at work <i>protecting</i> others, or selling another ticket to a movie, or looking back at that night when a life was lost while they did nothing because someone <i>qualified</i> was taking care of <i>it</i>, or because they were afraid ...of him? I don't want to write about how confused, biased, and embarrassingly void of thought, real research, and understanding the media coverage concerning his death, and his life, has been. I don't want to write about the deafening silence from those who get a salary for representing Ethan and all people with Down syndrome (never again paid by my daughter), and then, too late, filling that empty air with even emptier words. I don't want to write about agendas or people who can't come together even in death, and who bicker, or try to one-up each other in some strange game of 'Whose cause is this?', or people who look at their own child with Down syndrome and still see <i>other,</i> or people who don't see a problem with a police department investigating its own employees. I don't want to write about people who hide behind the anonymity of the internet to spew their venom on 'retards', unsuspecting parents, and at anyone who reads the comment section in a newspaper (you are scum and I feel sorry for you). I refuse to write just because if I don't, the Department of Justice might just think that this horror, this violation of basic human rights, this dismissal of 6 million people has blown over, because there have been some vague promises of 'training' for people, who are supposed to be protecting my daughter as an individual, on how to see her and the other 6 million <i>exactly like her</i> even more differently, as strangers in their own homes, as beings beyond comprehension by the simple power of common sense.<br />
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I don't want to. Ethan isn't the cause of this. He isn't to blame. Neither is his Down syndrome. The blame belongs on the shoulders of those whose actions led to Ethan suffocating to death, and on a society in which a person's life is instantly deemed to be of lesser value, less worth saving, dismissible, or to have a potentially dangerous, out-of-control component, when his assumed IQ score is below 70.<br />
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Society needs fixing. Those of you who look at Ethan or my kid and don't see a person, an equal, need fixing. Adjustment. Change. You don't get to judge my daughter, I get to judge you.<br />
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Successful communication is not an effortless task. Communication takes practice, patience, compassion, and a willingness to listen and to try to understand. Communication takes years and years to learn and even then, in any given situation, at any given time, communication might fail. Even with the best of intentions on all sides.<br />
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But what if the intention, the willingness to understand, is not there? What if, instead of seeing and listening to a person trying to communicate with you, all you see is a stereotype?<br />
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<i>He isn't small? He isn't cute? </i><i>He's not smiling either? There's no belly laugh. He's not happy. He's not contained. Where is his keeper? Why is he by himself? Who let him out? He's reacting. He won't understand anything but force.</i><i> Not fit to be out in public. Those can't be words. They don't understand. They don't think. Did he just say 'mom'? Nah. Couldn't have. Retard strength. Better watch out. </i><br />
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But what if you grew up having a friend who had Down syndrome? A student in your class? What if the lady who sells you your weekly lottery ticket and you regularly chat to had Down syndrome? What about a coworker, your boss? What if a kid in your daughter's soccer team had Down syndrome, in your son's ballet class, a guy in your aunt's book club, that lady who golfs with your sister-in-law?<i> </i>What if your favorite television show had a character with Down syndrome? How about the bartender at your favorite Friday-night watering hole? What if you had that Friday-night beer sitting by your friend who has Down syndrome, listening to his woman troubles or work stories, and telling him about this weird mole on your back, or how you think your car might not need all of those repairs the shop's quoting you for? What if we valued everyone, included everyone, and then let the chips fall where they may? What if we didn't assume anything, but looked at everyone as an individual?<br />
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What if people with Down syndrome really were included in every aspect of society? What if we all made an effort to understand, to communicate?<br />
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Simplistic? Maybe. A real choice? Yes.<br />
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<b>Include. Interact. Accept. Embrace</b>. All four are choices you can make. Today.Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com8