Thursday, March 27, 2014

A few thoughts on the DS-Connect registry.

There is a government registry 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."

"Wow, great!" you might think, "What research?"

Well. At first glance the "Goals of NICHD Research on Down syndrome" 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.

But:
 
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?

From this document it emerges that there is no difference, diversity, or divergence in cognition, just cognition that is the issue in Down syndrome. Which is Down syndrome, while other stuff is co-morbid. Much effort and much emphasis is on research to do with affecting cognition or its development.

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):

IQ-Boosting Drugs Aim to Help Down Syndrome Kids Learn

Can Down Syndrome Be Treated?

People With Intellectual Disabilities Get a Say in Drug Trials

New Drugs May Transform Down Syndrome

A Drug for Down Syndrome

Yet, often the registry is sold - 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.

We all know that talk of cognitive research is a mine field still.

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.

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 "brain better" (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.)

The DS-Connect registry is sponsored by National Institutes of Health (NIH) which state that "In developing DS-Connect™, the NIH listened to information and expertise provided by families of people with Down syndrome, researchers who study Down syndrome, and other members of the public" (My emphasis).

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.

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 my 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.

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 treating them?

Where do we draw the line between medical and social?

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 "similarities"?

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 pathology 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.

If we call them challenges, the narrative of overcoming is sure to tag along.

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 deficits for what, if anything, might emerge about treating childhood leukemia, sleep apnea, or congenital heart defects.

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?

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.

What exactly are we putting out there about Down syndrome, and about people with Down syndrome?

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 "people with Ds count, and that we want more for them," 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.

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 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, since I haven't signed my kid up yet.

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 consortium members 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.

That's not something I've witnessed at this point. I sincerely hope I just haven't been looking hard enough.

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 people with Down syndrome, not about "families living with Down syndrome."

Here's a story you might find interesting (by which I mean horrifying): 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.

Are we still hung up on a super race, a member of which never needs assistance with anything? Just not actually using the words super or race, but independence, intellect, and productivity instead? Where does medical stop and social begin and vice versa?

Friday, March 21, 2014

#WDSD14

Today is World Down Syndrome Day.

Today is not about creating or spreading awareness (FYI, not really about awareness, like, ever, yo), not even really about acceptance (although every single day should be about active acceptance, so there's that. Heh).

Today is about celebration, about pride, about culture, about rights.

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.

A celebration of taking PRIDE in one's self. All of one's self.

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:



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:



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: never is), or how our life looks or is, or, deep sigh, about "advertising" for Down syndrome to stall abortions or something, another deep sigh. Nope.

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 people with Down syndrome.

"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.

I want my daughter to be able to say "I'm proud to have Down syndrome."

That's what World Down Syndrome Day is about.

Mother Nature thinks so too and gives Down syndrome two thumbs up:



One final thought, because it's eating me up. The same one I had last year also so maybe I should scream it today?

WHAT DO FUNKY SOCKS 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?

Thought so.

I'll see your socks and raise you pride. For free. How's that for a good start to a celebration?

Thursday, March 6, 2014

Prenatal testing and "debilitating" disabilities

When William Saletan writes about abortion, reproductive rights, and the political right in these words:

"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."

I can't but agree wholeheartedly. There isn't much I'm going to say about abortion in this post.

Because aborting fetuses with Down syndrome is not 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.

Eugenics is not 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.

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".

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.

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.

I don't think we give "just words" enough credit in the maintenance of the oppressive systems that plague most of our societies today.

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.

Al Jazeera America published a piece by Kat McGowan titled: Will new prenatal tests scare parents into bad decisions? 

NPR ran a story by Rob Stein titled: Blood Test Provides More Accurate Prenatal Testing For Down Syndrome

(Lisa at Life as I Know It came across a third article and blogged about it.)

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. "[Sex chromosome aneuploidies] are nowhere near as debilitating as Down syndrome." she writes. A photo caption for the story talks of "...Down syndrome and other serious health problems…" Several times McGowan refers to phenotype as "symptoms" as if both SCAs as well as Trisomy 21 are diseases.

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.

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.

But what is normal here? Who are we employing as this non-debilitated example whose life is smooth sailing and not hindered, delayed or weakened by a condition?

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.

Disability is bad, yo. Normal is the new (and the old) black.

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.

The only guaranteed result of an aneuploidy are people who will have, or who other people 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.

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?

Of course not. If someone whose condition debilitates them is unhappy with their life then Down syndrome is not a debilitating condition. At least statistically.

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.

And we read on, while we read in, take on board, integrate, let shape and set in.

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 caring parenting choice to make.

I did say parenting choice. When disability is concerned even murder is sometimes cloaked 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."    

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 better, in order to ensure the 'natural progression of things', when it comes to providing a balanced 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."

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.

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.

McGowan's piece leaves the reader on a hopeful note, which I greatly applaud, but that contrasts with the language employed in the piece. "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." 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."

The story on prenatal tests by Stein, 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 for 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 they share, that they have, that is a seminal part of their lives. That only they can ever definitively know.

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 real problem with the tests: "but these tests might enable for someone to terminate for non-debilitating reasons." Sigh.  

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.

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: "And out of the ground the LORD God formed every beast of the field, and every fowl of the air; and brought them unto Adam to see what he would call them: and whatsoever Adam called every living creature, that was the name thereof."   'Naming' as owning, as having dominion.

Here's the Slate thought:

"Symbolic change and practical change have a symbiotic relationship"

No point? On point?

Friday, February 21, 2014

I don't respect your (or my) intelligence

What 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?

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?

Something to strive for if you're deemed to have "learning and memory deficits".

Or to put it more bluntly and in a polarizing manner: Why are evil geniuses something that only seem to exist in fiction?

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?

Why does the frightening part about Down syndrome seem to boil down to what not so long ago was known as "mental retardation?"

There are many people in my life and its periphery (lucky for them way 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 capable of, what people with Down syndrome have achieved, what all will be possible regardless, in spite of, in the face of, as well as, and I want to specifically add this as a negative also, because of Down syndrome.

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.

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 my daughter.

As if I were worried that she wasn't "smart enough" to survive our society.

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.

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?

Just today I stumbled on a discussion on Twitter attempting to trace the unjust end of the Dunn trial to a juror's potential "cognitive deficits" rather than a system of racial oppression in the US.

Excuse me?  

There are constant comments coming from within the Down syndrome community. "Reading above grade level" said Cathy McMorris Rodgers 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?

I have written about achievement before, 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 written about it too. And written about it some more. People are taking on language, 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 minimize ableism, especially and most alarmingly in the context of social justice struggles.

Often equating, implicitly as well as explicitly, the recipient of the insult with someone like my kid.

Many people have repeatedly taken on the slurs retard and retarded. Others have challenged special and even created glossaries (check this out, please), others remind us of what all the slur 'stupid' really carries in its connotations. There exist great analyses on why ableist language is never "just words". I've talked about the rhetoric of ableism many times and will do so again. I'm sure.

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:

"They treated me as if I weren't intelligent."

"My different way of communication doesn't mean I'm stupid."

"Just because I have a learning disability doesn't mean I'm not smart."

And many other statements that always come with a caveat that can be broken down to an assertion of intelligence regardless of some physical or developmental disability.

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.

Too different. Unquestioningly bad.

These statements are like a sharp punch, right in my gut. Every. Single. Time.

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!

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.

Intelligence privilege. It's a thing.

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.

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.

And how fucking fucked up we are for looking for reasons for existence for them.

Justification, qualifications, reason, purpose.

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.

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?

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.

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.

Is this a smart choice? To be honest, I don't know. But then again, I don't really care either.

Tuesday, January 21, 2014

#abledpeoplesay awful things sometimes

And those times quickly amount to evidence of a profound lack of access, inclusion, acceptance, and equality. Words are not just words.

Yesterday Lydia Brown, who blogs at Autistic Hoya, started a hashtag on Twitter called #abledpeoplesay. 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.

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.

I think she succeeded, and the tag is still going strong.

I learned so much from the tag. If you haven't already, you really should check it out.

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:

Whose responsibility is it to work for change in society, to work for acceptance, inclusion and equality?

What makes a self-advocate?  

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 for teaching purposes :-D You'll get that "joke" later)

And

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 tone policing in lieu of actual counterarguments, silencing, and ways of interjecting yourself into a debate not about 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.)

A DUTY to change a resistant society

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 about them (us), the abled people, 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: listen to the member of the oppressed minority and not elbow themselves into the spotlight or educate the oppressed minority on how "best" to do things.

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 noble fight of the noble people with disabilities for noble and forgiving freedom, in their noble wish to gently educate those who just mean well. Eye roll. If that comes across as angry and sarcastic then at least I'm on point.

Did I mention tone policing as a tool for silencing and derailing?

And in case you were wondering how disabled people should go about their lives the tweeter offered this last bit of helpful wisdom 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.

Engage more sarcasm (and maybe a pinch of anger, but I'll be honest most of that is just my delightful personality):

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.

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.

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?

Inclusion, acceptance, equality, minority, oppression, stereotypes, privilege. Such foreign concepts.

*puts in eyedrops*

My kid is not a self-advocate and I am not an important voice

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.

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 is 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).

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 Lydia Brown or Eric Matthes, 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 impact 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.

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.

But I choose to do that. I am privileged enough to be making that choice. 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.

And while it hurts me to my core that my child is not often seen as an equal or worse, I can't speak as 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 be her, or even know what it's like to be her.

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.

I mean, really let it sink in.    


 This is NOT about me. Not everything is about me.

****

Trying to find out who the real architects of change should be.
Join us at Down wit Dat.

Saturday, January 18, 2014

What 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 Special Needs Parents (apparently, this being a SNP is a thing and we are all the exact same and our struggle, because that's what our lives are, is the exact same 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.

Seriously. I will go apeshit on a bottle of wine and cry myself to sleep after yelling unconstructively on various social media (example: Blogger).

I am not a member of a marginalized and oppressed minority, my kid is.

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.

Shit.

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 happens to a family, something that's all about parents and siblings?

Fuck that shit.

This morning, as I sat on my couch, surfed Twitter, sang along to The Beautiful South's Don't Marry Her and El Chapo de Sinaloa's Para Que Regreses 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.

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.

2. I can fucking do my own laundry and bake a mean fucking casserole, if I want to. With and without bacon.

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 meaner and louder. And sweary. And why ungrateful might just take on a new dimension if crap narratives keep getting this much fucking airtime.

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.

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.

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.

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.

Everyone should have a felted skunk.

****

Intersecting (IT'S NOT ONE ROAD, PEOPLE) with Jen from Down wit Dat

Sunday, January 5, 2014

Happiness is Probably not a Warm Gun

What do happiness and being happy mean?

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.

But what about in a more collective sense? On a societal level?

I stumbled upon an article about this guy's Happiness Project. (It's in Finnish and can be found here 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.

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.

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.

I mean, I'm all for happy, but not at any cost.

Basic building blocks

The first time I wrote about finding out that Babe had Down syndrome, I framed the post around the ubiquitous and well documented exchange that goes something like this:

Every other person: "So, do you wish for a boy or a girl?"
Expectant parent: "We don't care, as long as he or she is healthy."

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 healthy 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."

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 source of joy, happiness, and connection for me." Or use whatever lingo will come to replace such a limiting term as 'impairment'.

I really mean that.

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.

Then do the same for job and family. For achievement. For poverty. Then for intellect.

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 about happiness than cancer.

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.

But I'm up for challenging and questioning and analyzing in order to be better at others. 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.

Happiness as attitude

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.

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 here.) 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.

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.

No.

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: catharsis is a thing, and not one I take lightly.

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.

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.

I've spent lots of energy convincing people that my child, because of her having Down syndrome, is not always happy. 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."

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.  

Privilege

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 absence 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.

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.

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?

***

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 happy.

If anyone asks, Xmas didn't happen. K?


*My translations from an article by Petri Hollmén on Perjantaikokin blogi.