I have been struggling with a post about my everyday advocacy that would mention my hungry offspring, a jar of strawberry baby puffs, Doug Gansler, the Attorney General of Maryland, Sheriff Chuck Jenkins, a worthy petition, and a press release, all in one sentence.
Please click on the links and do the world (and my kid) a solid. Thanks.
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.
Could happen? There's got to be a first for everything.
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 Down Syndrome Uprising advocacy symposium), but how change truly happens, or actually, how I think we could be better at making it happen.
I'm looking at you, National Down Syndrome Society (NDSS), and you, National Down Syndrome Congress (NDSC).
This is what happens when you don't answer my mails. Just saying.
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 we can be the change we wish to see in the world.
Right? I'm sure I've seen stuff like that on a bunch of Facebook memes. Seed of truth and all that...
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 strong convictions about how they like to be treated and talked about.
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.
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.
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.
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.
We need to talk the talk.
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.
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.
We all, as in the people with Down syndrome and their parents, families and friends, know that there simply are no behaviors or health conditions that are purely found in relation to Down syndrome.
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 "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 normally in an unusual situation." (my emphasis) or how our attention needs to be focused on training of law enforcement and first responders "on dealing with people who present the challenges faced by individuals with disabilities." We should maybe also steer clear of making people with Down syndrome out to be people "who may not respond in a way that the personnel are familiar with or have seen before." 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.
Maybe it's just me, but I don't want to go out there and tell my surroundings: "Hey you, expect strange with my kid, cause, you know, she's abnormal and all."
I can't believe that I have to spell this out. In 2013. Sheesh.
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."
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.
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.
We must not shoot ourselves in the back, or in the foot, or, well, anywhere. Actually, let's keep away from shooting, period.
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.
Now.
Enough with the clichés already, let's do this!
Sunday, May 5, 2013
Saturday, April 20, 2013
What If
If 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.
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.
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.
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 the comments to this post, which the person who runs this blog calls "opinions" and "valid discussion".
My child is often marginalized and dehumanized.
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 expertise?
Would that situation frighten you?
It frightens me.
The world at large seeing my child as somehow too different, defective, or less than 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 Robert Ethan Saylor and plot a better tomorrow for everyone.
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.
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 done, this mother included.
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.
'Down syndrome specific training' is born.
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.
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.
I need to be true to my heart and the one who calls me mom.
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.
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.
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.
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.
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 the comments to this post, which the person who runs this blog calls "opinions" and "valid discussion".
My child is often marginalized and dehumanized.
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 expertise?
Would that situation frighten you?
It frightens me.
The world at large seeing my child as somehow too different, defective, or less than 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 Robert Ethan Saylor and plot a better tomorrow for everyone.
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.
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 done, this mother included.
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.
'Down syndrome specific training' is born.
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.
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.
I need to be true to my heart and the one who calls me mom.
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.
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.
Tuesday, April 2, 2013
Antidote
I don't want to write about Robert Ethan Saylor.
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 protecting 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 qualified was taking care of it, 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 other, 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 exactly like her even more differently, as strangers in their own homes, as beings beyond comprehension by the simple power of common sense.
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.
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.
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.
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?
He isn't small? He isn't cute? 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. 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.
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? 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?
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?
Simplistic? Maybe. A real choice? Yes.
Include. Interact. Accept. Embrace. All four are choices you can make. Today.
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 protecting 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 qualified was taking care of it, 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 other, 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 exactly like her even more differently, as strangers in their own homes, as beings beyond comprehension by the simple power of common sense.
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.
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.
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.
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?
He isn't small? He isn't cute? 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. 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.
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? 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?
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?
Simplistic? Maybe. A real choice? Yes.
Include. Interact. Accept. Embrace. All four are choices you can make. Today.
Monday, March 18, 2013
Natural
Let me open with the most important message that I am ever going to give to you. A message I will shout from the rooftops as long as I'm here on this earth. A message that fuels my advocacy and activism and allows for me to leave good intentions and acts of kindness that are really moments of pity or charity in the dust, fallen by the wayside with other outdated and faulty notions. A message that I believe in with every fiber of myself, and that guides my parenting, my relationships, and my being.
Disability is natural.
Down syndrome is natural.
Trisomy 21, or Down syndrome, is a frequently occurring genetic variant, highly viable with life, and something that simply, naturally occurs. Down syndrome is not the other. In a parallel life, you could have Down syndrome. In this very life, you could have very well been born with Down syndrome.
And that wouldn't make you unnatural, challenged, broken, or less than human. You would still be you.
Down syndrome does not need to be fixed or 'normalized'. It needs to be allowed to exist as something that is an acceptable and natural part of some people, our equals in everything, regardless of their perceived capabilities. Meeting milestones, or being highly functional (whatever the hell that means) is not 'winning' at Down syndrome, or at life. Living life, and having equal opportunity for the same experiences as everyone else is what life is all about.
You know, being human. Having rights and responsibilities, and being able to decide what to do with those rights, and whether to honor those responsibilities. And, facing the consequences.
On the 21st it is World Down Syndrome Day. A special day for celebration and awareness. This year there's some weirdness about wearing loud socks to raise awareness. An icebreaker for discussion? In all honesty, I don't really think either of us needs an icebreaker for awareness. We're evolving.
We need to take action.
You might have gleaned from my last post that simple awareness is no longer doing it for me. I know better now. There is a need for acceptance. There is a need for action. A need to level the playing field. To make every single classroom inclusive in spirit and in space. To remove having Down syndrome as a negative in a college or a job applicant, as is being done in the case of race, gender, and sexual orientation. A need to embrace everyone's uniqueness and individuality without there being some who are 'more different' than others. A need to stop using language - and not just the word retard(ed), but suffers from, is inflicted with, a Down syndrome patient, a risk of Trisomy 21, them - that degrades, demeans, marginalizes and dehumanizes those with intellectual disabilities. A need to focus on how exactly Down syndrome and those with Down syndrome are portrayed and represented in the media. Unfair and biased portrayals, as well as fluff pieces that utilize those with I/DDs for inspirational feel-good in the mainstream need to be publicly denounced.
We need to actively advocate for acceptance and inclusion, even if it means alienating people who are uncomfortable with having their worldview challenged.
We need active acceptance and inclusion, not just passive awareness. We need active involvement by everyone, everywhere, not just slactivism by adding partial visibility with a click, or a smile, or a token birthday invitation. We need a community where admission is not only by a chromosome count, either way.
You don't have to love someone with 47 chromosomes to understand, you just have to be human.
There MUST be an organization that barks up and makes a terrifying stink every time someone in the media, in medicine, in legislation, in the public eye, anywhere in the world, gaffes. Be it the r-word or a homicide swept under the rug. There must be an organization that ensures that there are repercussions for marginalizing acts, for drawing on stereotypes, for exclusion, for dehumanization by language. There must be anger and outrage that leads to shifts in attitude and to organized action. Instead of intentions, we need to focus on consequences, on what is, not what was intended.
We need to stop accepting crumbs, in the fear that if we don't, we might not be 'liked'.
Why, hello there REVOLUTION. You're needed now.
People with Down syndrome are not defective. Society is defective.
Yet. This is not about legislation, or about funding, or about research. This is about attitudes. This is about human rights.
And the question of who counts as human.
Disability is natural.
Down syndrome is natural.
Trisomy 21, or Down syndrome, is a frequently occurring genetic variant, highly viable with life, and something that simply, naturally occurs. Down syndrome is not the other. In a parallel life, you could have Down syndrome. In this very life, you could have very well been born with Down syndrome.
And that wouldn't make you unnatural, challenged, broken, or less than human. You would still be you.
Down syndrome does not need to be fixed or 'normalized'. It needs to be allowed to exist as something that is an acceptable and natural part of some people, our equals in everything, regardless of their perceived capabilities. Meeting milestones, or being highly functional (whatever the hell that means) is not 'winning' at Down syndrome, or at life. Living life, and having equal opportunity for the same experiences as everyone else is what life is all about.
You know, being human. Having rights and responsibilities, and being able to decide what to do with those rights, and whether to honor those responsibilities. And, facing the consequences.
On the 21st it is World Down Syndrome Day. A special day for celebration and awareness. This year there's some weirdness about wearing loud socks to raise awareness. An icebreaker for discussion? In all honesty, I don't really think either of us needs an icebreaker for awareness. We're evolving.
We need to take action.
You might have gleaned from my last post that simple awareness is no longer doing it for me. I know better now. There is a need for acceptance. There is a need for action. A need to level the playing field. To make every single classroom inclusive in spirit and in space. To remove having Down syndrome as a negative in a college or a job applicant, as is being done in the case of race, gender, and sexual orientation. A need to embrace everyone's uniqueness and individuality without there being some who are 'more different' than others. A need to stop using language - and not just the word retard(ed), but suffers from, is inflicted with, a Down syndrome patient, a risk of Trisomy 21, them - that degrades, demeans, marginalizes and dehumanizes those with intellectual disabilities. A need to focus on how exactly Down syndrome and those with Down syndrome are portrayed and represented in the media. Unfair and biased portrayals, as well as fluff pieces that utilize those with I/DDs for inspirational feel-good in the mainstream need to be publicly denounced.
We need to actively advocate for acceptance and inclusion, even if it means alienating people who are uncomfortable with having their worldview challenged.
We need active acceptance and inclusion, not just passive awareness. We need active involvement by everyone, everywhere, not just slactivism by adding partial visibility with a click, or a smile, or a token birthday invitation. We need a community where admission is not only by a chromosome count, either way.
You don't have to love someone with 47 chromosomes to understand, you just have to be human.
There MUST be an organization that barks up and makes a terrifying stink every time someone in the media, in medicine, in legislation, in the public eye, anywhere in the world, gaffes. Be it the r-word or a homicide swept under the rug. There must be an organization that ensures that there are repercussions for marginalizing acts, for drawing on stereotypes, for exclusion, for dehumanization by language. There must be anger and outrage that leads to shifts in attitude and to organized action. Instead of intentions, we need to focus on consequences, on what is, not what was intended.
We need to stop accepting crumbs, in the fear that if we don't, we might not be 'liked'.
Why, hello there REVOLUTION. You're needed now.
People with Down syndrome are not defective. Society is defective.
Yet. This is not about legislation, or about funding, or about research. This is about attitudes. This is about human rights.
And the question of who counts as human.
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Add your WDSD post now!
Friday, March 8, 2013
Why I do what we do and then some.
Now that I've written about the Spreading the Word to End the Word, as in ending the use of the r-word (retard and retarded), all of the different angles I could have approached it from keep swirling in my mind.
I chose to make it personal. About my kid, about Babe. because it very much is personal. It is about you hurting my kid and my family when you say it.
I decided to take my words and punch with them. I threatened.
Why did I choose that approach?
While I was driving yesterday a radio commercial came on, part of a campaign targeting drunk driving. The message was that it is more expensive to drive drunk if you get caught than if you just take a taxi. This approach does not and never has appealed to me. I'm the person who talks back to the radio and says "Forget about money, what if you kill someone by accident, what if you hurt someone? Ever think about that?" or something like that, usually probably peppered with some 'fuck' and 'fucking' in there too. Because that is the approach that appeals to me. Not just the swearing though, the caring about others and about not hurting people.
I'm not overly shaken by the thought of a huge fine. It's only money.
I'm not overly shaken by the thought that I will get hurt myself if it's the direct consequence of my own bad choice. I'm an adult, I make my own choices, I live (or not) with the consequences. I usually instinctively try to stay alive and thus don't normally even contemplate driving drunk.
I am, however, very shaken by the thought of hurting someone who I don't know, whose only mistake is not taking into account that a complete stranger can't be bothered to think things through and put themselves in other people's shoes and consider how their bad choice could affect an innocent bystander.
This is not the first time I've heard the financial loss approach to drunk driving so there must an audience out there for it. I get it. It must hit home with some people. Good for them for not driving drunk, even if they're not worried about killing their neighbor, but having to work overtime because of a monstrous fine. Whatever works.
Whatever works? Really?
This has made me think of this whole blogging thing I'm doing here, and the way that I'm doing it. About writing about Down syndrome as a point of advocating for people with Down syndrome, or with other intellectual or developmental disabilities. Blogging to make a point instead of processing something, or recording something, or even rejoicing in something. I have moved on from awareness. Awareness is no longer doing it for me, or for Babe.
We need more. We need it all.
I don't just blog for awareness, I blog for complete acceptance and for real, meaningful inclusion of people with Down syndrome in our society. I blog to level the playing field. I blog about Down syndrome to change perceptions, to find others who think alike so that together we can be stronger, to make the world better for Babe and for everyone with Down syndrome. I take my kid to the park so that she can enjoy the fun that is gazillion screaming toddlers and I blog about Down syndrome so that she can be in an inclusive setting in a classroom once she goes to school and not be marginalized as 'too different from the rest of us'.
I don't want to journal and I don't want to show you what our life is really like. I want to change you for the better or if you've already arrived I want to be your friend.
I want a life for my kid that is in no way made harder by false impressions of Down syndrome and people with Down syndrome.
This is where I'm at, and where I fit in. In a revolution.
I chose to make it personal. About my kid, about Babe. because it very much is personal. It is about you hurting my kid and my family when you say it.
I decided to take my words and punch with them. I threatened.
Why did I choose that approach?
While I was driving yesterday a radio commercial came on, part of a campaign targeting drunk driving. The message was that it is more expensive to drive drunk if you get caught than if you just take a taxi. This approach does not and never has appealed to me. I'm the person who talks back to the radio and says "Forget about money, what if you kill someone by accident, what if you hurt someone? Ever think about that?" or something like that, usually probably peppered with some 'fuck' and 'fucking' in there too. Because that is the approach that appeals to me. Not just the swearing though, the caring about others and about not hurting people.
I'm not overly shaken by the thought of a huge fine. It's only money.
I'm not overly shaken by the thought that I will get hurt myself if it's the direct consequence of my own bad choice. I'm an adult, I make my own choices, I live (or not) with the consequences. I usually instinctively try to stay alive and thus don't normally even contemplate driving drunk.
I am, however, very shaken by the thought of hurting someone who I don't know, whose only mistake is not taking into account that a complete stranger can't be bothered to think things through and put themselves in other people's shoes and consider how their bad choice could affect an innocent bystander.
This is not the first time I've heard the financial loss approach to drunk driving so there must an audience out there for it. I get it. It must hit home with some people. Good for them for not driving drunk, even if they're not worried about killing their neighbor, but having to work overtime because of a monstrous fine. Whatever works.
Whatever works? Really?
This has made me think of this whole blogging thing I'm doing here, and the way that I'm doing it. About writing about Down syndrome as a point of advocating for people with Down syndrome, or with other intellectual or developmental disabilities. Blogging to make a point instead of processing something, or recording something, or even rejoicing in something. I have moved on from awareness. Awareness is no longer doing it for me, or for Babe.
We need more. We need it all.
I don't just blog for awareness, I blog for complete acceptance and for real, meaningful inclusion of people with Down syndrome in our society. I blog to level the playing field. I blog about Down syndrome to change perceptions, to find others who think alike so that together we can be stronger, to make the world better for Babe and for everyone with Down syndrome. I take my kid to the park so that she can enjoy the fun that is gazillion screaming toddlers and I blog about Down syndrome so that she can be in an inclusive setting in a classroom once she goes to school and not be marginalized as 'too different from the rest of us'.
I don't want to journal and I don't want to show you what our life is really like. I want to change you for the better or if you've already arrived I want to be your friend.
I want a life for my kid that is in no way made harder by false impressions of Down syndrome and people with Down syndrome.
This is where I'm at, and where I fit in. In a revolution.
I want you to love like I love. Just love.
Tuesday, March 5, 2013
Spread the Word to End the Word and Quit It with the Attitude while You're at It
Did you know that today is the official Spread the Word to End the Word day? To stop the use of the r-word (retard and retarded).
I did. I'm more than well aware. It is a huge deal to me. I confront complete strangers in public who I hear using the word.
Yet I've never written about it. How is that?
Well. To say that the r-word is a global issue would be exaggerating. It is an issue in the English-speaking world. So I think in our previous life our family has really been sheltered from it. Don't get me wrong, the attitude that goes right alongside with using the r-word is a global problem, or at least has been everywhere in the world we've ever lived or traveled, and while that's not everywhere, it's quite a few places.
But what does attitude have to do with a simple word?
Everything.
You can take pretty much any expression and if you twist it enough you can infuse it with enough contempt to use it in a derogatory way.
You can say "I hate my computer, it's so slow and crashes all the time, ugh, it's so exquisitely extraordinary."
There is nothing good about exquisitely extraordinary in that sentence, especially if you add tone. In the sentence the words are twisted to mean something bad, something slow, something to be hated. Anything can be an insult if a language user is determined enough. However, some words already carry a negative connotation, even if they weren't born that way.
Which brings me to retard and retarded. And why we should all just stop using those words about anything.
The truth is that our crappy/ misguided/ misinformed/ hateful/ wrong/ dehumanizing/ marginalizing attitudes about those with intellectual and developmental disabilities have twisted what originally was a medical diagnosis to mean something hateful, broken, slow, bad, less than.
"I hate my computer, it's so slow and crashes all the time, ugh, it's so retarded."
When you say this I know you don't mean to call my kid retarded, but what you are in fact, whether you explicitly mean it or not, saying to me is
"I hate my computer, it's so slow and crashes all the time, ugh, it's so like your kid."
Because according to most, some in authority too, she is mentally retarded, because if tested her IQ would probably score somewhere below what is statistically considered to be the average. Still, in our world Babe's supposed IQ doesn't mean anything beyond an arbitrary number, one which we are completely fine with as a part of her and as a part of what makes her her.
Until you take what is sometimes inferred from that number and use it to mean that something despicable is like my kid.
Then there's hell to pay.
Respect instead. Think. Never impose on others what you would not choose for yourself. Remember the ethic of reciprocity.
My daughter is your equal.
And don't even think about using developmentally disabled, kehitysvammainen, mindrebegavede, or intellectually disabled to talk about your crap computer unless your computer is this:
And I very much doubt it since this is my kid. Being fucking awesome with a box full of chainsaw, as usual.
I did. I'm more than well aware. It is a huge deal to me. I confront complete strangers in public who I hear using the word.
Yet I've never written about it. How is that?
Well. To say that the r-word is a global issue would be exaggerating. It is an issue in the English-speaking world. So I think in our previous life our family has really been sheltered from it. Don't get me wrong, the attitude that goes right alongside with using the r-word is a global problem, or at least has been everywhere in the world we've ever lived or traveled, and while that's not everywhere, it's quite a few places.
But what does attitude have to do with a simple word?
Everything.
You can take pretty much any expression and if you twist it enough you can infuse it with enough contempt to use it in a derogatory way.
You can say "I hate my computer, it's so slow and crashes all the time, ugh, it's so exquisitely extraordinary."
There is nothing good about exquisitely extraordinary in that sentence, especially if you add tone. In the sentence the words are twisted to mean something bad, something slow, something to be hated. Anything can be an insult if a language user is determined enough. However, some words already carry a negative connotation, even if they weren't born that way.
Which brings me to retard and retarded. And why we should all just stop using those words about anything.
The truth is that our crappy/ misguided/ misinformed/ hateful/ wrong/ dehumanizing/ marginalizing attitudes about those with intellectual and developmental disabilities have twisted what originally was a medical diagnosis to mean something hateful, broken, slow, bad, less than.
"I hate my computer, it's so slow and crashes all the time, ugh, it's so retarded."
When you say this I know you don't mean to call my kid retarded, but what you are in fact, whether you explicitly mean it or not, saying to me is
"I hate my computer, it's so slow and crashes all the time, ugh, it's so like your kid."
Because according to most, some in authority too, she is mentally retarded, because if tested her IQ would probably score somewhere below what is statistically considered to be the average. Still, in our world Babe's supposed IQ doesn't mean anything beyond an arbitrary number, one which we are completely fine with as a part of her and as a part of what makes her her.
Until you take what is sometimes inferred from that number and use it to mean that something despicable is like my kid.
Then there's hell to pay.
Respect instead. Think. Never impose on others what you would not choose for yourself. Remember the ethic of reciprocity.
My daughter is your equal.
And don't even think about using developmentally disabled, kehitysvammainen, mindrebegavede, or intellectually disabled to talk about your crap computer unless your computer is this:
And I very much doubt it since this is my kid. Being fucking awesome with a box full of chainsaw, as usual.
***********************************************************
This is my contribution to the Spread the Word to End the Word symposium held by the good folks (yes, I'm one of the good folks, nothing quite like patting yourself on the back, is there?) at Down Syndrome Uprising - the blog (yes all the cool revolutions have blogs now too). Click on the links. Read what other people have to say about the R-word.
This Blog Symposium brought to you by:
Add your R-Word post now!
Tuesday, February 26, 2013
What? Was I yelling?
Let's get one thing straight:
You do NOT have to accept my daughter because she has Down syndrome.
I'll rephrase:
She does NOT need to be coddled because of her intellectual disability. Coddling and understanding are two vastly different behaviors.
I'll say it again:
It does NOT make you a good, tolerant individual if you accept my kid because she has Down syndrome.
And again:
Having Down syndrome does NOT mean she should be treated in any specific way. She should be treated according to her particular personality, behavior, and skill set.
Once more:
She is no more different than any of us are. She is just as different as all of us.
Maybe you didn't catch me the first time:
She should be fully accepted and included by everyone because she is a fellow human being and until she proves that the acceptance and inclusion were the wrong things to do - let's say she robs a bank at gunpoint or poisons her elderly yet wealthy husband's plate of porridge - and has to be removed from society into a prison, she should be accepted as as much of a member of society at large as you and I.
Deal? Am I getting through? Can we agree on these simple details about who is human and who is not and what that means, and get on with the posting of pictures of Babe covered in food, or playing with her pretend aquarium? Yes?
You do NOT have to accept my daughter because she has Down syndrome.
I'll rephrase:
She does NOT need to be coddled because of her intellectual disability. Coddling and understanding are two vastly different behaviors.
I'll say it again:
It does NOT make you a good, tolerant individual if you accept my kid because she has Down syndrome.
And again:
Having Down syndrome does NOT mean she should be treated in any specific way. She should be treated according to her particular personality, behavior, and skill set.
Once more:
She is no more different than any of us are. She is just as different as all of us.
Maybe you didn't catch me the first time:
She should be fully accepted and included by everyone because she is a fellow human being and until she proves that the acceptance and inclusion were the wrong things to do - let's say she robs a bank at gunpoint or poisons her elderly yet wealthy husband's plate of porridge - and has to be removed from society into a prison, she should be accepted as as much of a member of society at large as you and I.
Deal? Am I getting through? Can we agree on these simple details about who is human and who is not and what that means, and get on with the posting of pictures of Babe covered in food, or playing with her pretend aquarium? Yes?
This is someone going to places (or at least the kitchen) as long as you let her.
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