Monday, March 18, 2013

Make World Down Syndrome Day a Day of Action

Thursday is World Down Syndrome Day.  It is a day of celebration and of recognition.  It is also a day of global awareness.

Honestly, I've about had it with awareness.  I'm done, finished.  Most people are aware of Down syndrome by now.  They may not know exactly what is involved and may be very prejudicial as they base their opinions on outdated and incorrect information.  But, they know it exists.  Instead of having yet another day of awareness, I'd like to make World Down Syndrome Day one of remembrance and action.

Several things have weighed on me in the last little while.  The first is a doll, made by a mother of a 13 year old girl with Down syndrome.  They are called "Dolls for Downs" [spelled incorrectly].  The idea here is that "every child wants a doll that looks like themselves." 

I don't agree and furthermore, I am uncomfortable with these dolls in principle.

Firstly, I dislike anything that has the potential to perpetuate the stereotype that all people with Down syndrome look the same.  They don't.  My son looks like the rest of my kids;  an amalgam of mine and my husband's family.  He does not look like these dolls any more than any other child with DS that I know personally.  I find the description of "pudgy features" in the video to be extremely offensive.

Additionally, like the bald barbie debate for pediatric cancer patients, I'm going to take the stance that my son does not need this doll.  He does not need another feel good, "isn't that cute!", soft focus awareness campaign (which is what this doll will surely turn into).  He needs a medical profession who gives a damn.  He needs a society that is tolerant and accepting of neurodiversity. He needs an education system that will not decide his future based on bureaucracy and preconceived notions.  He does not need a doll whose proceeds line a private pocket, like most "awareness" paraphernalia does.

While I'm on the subject, people with Down syndrome are often under-treated and marginalized by the medical community.  Don't believe me?  The Special Olympics has the largest database of people with Intellectual Disability/Developmental Delay that there is and as it turns out, most of the athletes are lacking medical treatment of some description.  According to  the Special Olympics, 70% of athletes are overweight, 35% require vision care/new glasses, 30% have severe hearing impairment and 24% have untreated dental decay, just to name a few things.

I also cannot tell you how many stories I have heard of physicians and other medical staff dismissing a mother's concerns or simply shrugging something off as "it's to be expected".  There is the assumption too, that a person with DS is somehow a lesser human being and therefore not worthy of care (that would be, presumably, better spent on a "normal" person).  We need to stop denying surgeries and life enriching treatments to people with developmental delays.  We need to stop expecting the worst and completely disregarding people when we hear "Intellectual Disability" or "Developmental Delay".  We need to stop walking in with preconceptions and make accommodations on a person to person basis. It's not that hard, really.  However, I might as well be speaking ancient Greek to most people to whom I bring this up, as outdated, paternalistic practices run deep within medicine, our education systems and in the general public. 

Instead of chalking untreated symptoms/conditions up to "the suffering of Down syndrome", we need to call this what it really is:  neglect

I'm also done with "inspira-porn".  We see this stuff every day, especially in the vein of promoting awareness. Cute kid pics, fun sayings.  People with DS in the news, whether attending a prom with a (gasp!) "normal" person or doing things that everyone else aspires to do/does without thinking is not news.  I've recently had to take a hard look at what I am sharing on my Down Wit Dat Facebook page.  Who cares, if a star has a friend with Down syndrome?  Why is "your prom date with DS" news worthy?  We have to stop being satisfied with the "Down syndrome folk in the paper!" mentality and look at why we think this is significant.  Why are we perpetuating this?  Instead of being continuously starved for positive portrayal of people with Down syndrome, we need to change how things are done in the first place.  We need to create a world where this is all very commonplace and and no more worthy of airtime than anything else.  We need to stop sharing things that make us feel good initially, but have little impact on the world outside of the DS community itself.  Why is it only "feel good" stories of proms and basketball games and Academy Award nominees and dolls and similar things make the paper, but actual issues do not?  Stop with the inspira-porn, stop with the fluff.  It's a negative coping mechanism at best and selling our kids down the river at worst.

Alongside run the good intentions;  he or she may in fact "mean well", but they are not doing anyone any favors.  I know you "don't mean it that way" when you drop an R-bomb, but that does not mean I have to accept or even entertain the content of your speech when you are being a bigot.  There is an old saying that applies here:  "the road to hell is paved with good intentions".  Good intentions don't further any cause and in fact only serve to hinder ours.

I am still struggling with the death of Robert "Ethan" Saylor (captured excellently by atypicalson's post).  In the event that you are unfamiliar with the case--as it has not received the same level of airplay as say, a fun picture, prom story or a doll--Robert went to a screening of Zero Dark Thirty and enjoyed the film so much that he wanted to stay and watch it again.  Robert was (past tense) a man with Down syndrome who refused to get out of his seat after the movie ended.  His worker had reportedly gone to get the car.  When the theater staff were unsuccessful in convincing him to leave, they called in three off duty police officers who were moonlighting as plainclothes security at the mall next door.  By all accounts, Robert was a loving man who looked up to police officers.  Instead, what he got were three, authoritative looking men demanding that he leave.  The worker returned and tried to get to Robert's side to hopfully de-escalate the situation and was denied entry.  When he refused to leave and began to swear at them,  they threw Robert to the ground, face down, and handcuffed him.

Where he died.

Ethan died due to positional asphyxiation.  By all accounts, he coded on the floor right there and all three sets of linked cuffs were removed after the ambulance was called.  CPR was initiated, but he was later pronounced dead in the local hospital.  He died, this son, over a 12 dollar movie ticket.

I am tired of hearing "there is more training needed" in response to this story.  I know a lot of police officers.  They all know about positional asphyxiation, as does any psych nurse, any of the security guards that I have the honour of working with and any person who is trained to use any method of restraint.  I think officers everywhere should be outraged by this as well, as it puts them all in a bad light and perpetuates the stereotype of The Thug in Uniform.  I am sick of hearing "tragic accident" in reference to this story.

Let's call it what it really is:  homicide.

Ethan Saylor was killed by ignorance, by impatience and quite possibly by arrogance.  He was killed because they only saw 'Down syndrome' and they did not want to waste any more time on him.  He was not in a state of "excited delirium", he was not delusional.  Instead of taking a little extra time, the off-duty officers took the easy way out and took Ethan down.  I wonder how long it took them to notice he was in trouble.  I wonder how long it was before that knee came off the back of his neck.

The official party line of course is that "police officers don't get training to deal with Down syndrome".  That is, if you pardon the pun, a complete cop-out.  Officers get a lot of training, especially when it comes to de-escalation.  However, these three decided to go the other way in this instance and being very knowledgeable of exactly how much force they can use and get away with, they employed that method instead. 

Ethan died.  Over twelve lousy bucks.

It is of little comfort, but these three may not get away with it.  After days of deliberation, Ethan's death has been ruled a homicide.  After being allowed to return to regular duties for a few weeks, all three officers are now on administrative leave.  Even though they were employed privately as mall security guards at the time, they were still able to invoke their police privilege of not having to provide statements. 

I'm not hearing a lot of outrage when I come across discussion of this story and this upsets me even more.  I hear sadness and theory, not the white-hot anger it deserves.  I see my son, in a few years time, being stubborn like his mother and dying because of it.

We need outrage.

We need to change the system, to show that brutalizing and victimizing people with Down syndrome and other Intellectual Disabilities/Developmental delays is not acceptable.  People with DS are statistically at higher risk to be victims of assault and abuse.  It is completely inexcusable when this occurs at the hand of one (or two, or in this case three) who have sworn to Serve and Protect.

So this Thursday, on World Down Syndrome Day, instead of promoting awareness, I and others like me will instead be taking action.  We are asking no longer;  we are demanding.  Fairness.  Equality.  Inclusion. 

Now.

Take action.  Speak out against the violence perpetrated against those with ID/DD's including Down syndrome.  Speak out against outdated, paternalistic practices by both Medicine and Education.  Denounce stereotypes, the promotion of hatred and yes, even (and especially) the R-word. Remember Robert "Ethan" Saylor and all victims of violence, of discrimination and neglect.

We need action.  That's the type of awareness I want to promote this World Down Syndrome Day.  It seems a lot more important than wacky socks.

 
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44 comments :

  1. OMG!!! I really LOVE you right now!!! I sincerely hope you can make some change, this nonsense has gone on for soooooo long.my husband and I used to say it would take someone dying for our advocates to really advocate. Sadly, we were wrong. We have been frustrated for 16 years. Finally we have a better way to reach more people! Never give up!

    ReplyDelete
    Replies
    1. It's time, I agree. Thank you for you kind words.

      Delete
  2. Good post, I love this kind of critical thinking and writing. We need to get the ghastly 'Moms' wised-up and listen more carefully to the real, hard-core social and human rights equality activists.

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    1. This is a civil rights movement. We have to treat it as such or we will never get anywhere.
      Thanks for the comment.

      Delete
  3. Absolutely. I hate the dolls and the schmultzy slogans. I shake with fear and anger at stories like this. Let's stand together and demand change.
    Downs Side Up

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  4. Replies
    1. Action. Advocates have to do just that. Advocate. Speak up. Call people on the R word, on outdated information. Educate where you can.

      Delete
  5. We are now aware... aware that we need to take action :-) So let's get it done.

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    1. Go here. https://www.facebook.com/DownSyndromeUprising
      This is where we are convening.

      Let's go.

      Delete
  6. I do all that, every day. and while I totally get the need to shake things up, rail, scream and shake your fist at the system; I want to make it clear that awareness is not over. Yes, in most of the civilized world, people are "aware" of Down syndrome as a thing, but they are mostly unaware (as all of us were before we knew our kids) of what it entails. The real medical stuff. The stuff that they think is a big deal, that really isn't. The stuff that is a bigger deal than they realize. And that is here in the U.S. In Eastern Europe, if you are born with Down syndrome outside a major city, chances are that you will live your entire (very shortened) life in an institution. Today. In 2013. And most people in your village won't be aware of your existence. This is the charge I am trying to lead, mostly failing, but not stopping. I'm doing this along with trying to make the world better right here at home for my three kids and all the kids with issues (because mine have many) that come after them. My kid was the first with Down syndrome in his school to be fully integrated. The first. This is only 8 years ago. Things have changed and changed rapidly. Have we come far enough? No, of course not. But, please don't bash awareness. Awareness has gotten us where we are. Awareness has let people know that our kids are their neighbors and friends and servers and fellow citizens, not just numbers or statistics.

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    1. If awareness works for you, that is great. It's not working for me and a lot of people I know. "Awareness" sadly, as with the case of breast cancer or autism, has sunk to big business.

      I'm not advocating throwing it all out the window or shouting in the wind. I'm saying we have to be louder and stop accepting things that are not helping us. We have to be smart, we have to be more organized. There are children in the US and other developed nations that are treated almost as poorly.

      People on the outside, those minds that we wish to change, learn differently too. Some do relate to soft focus things and that is great. There is a place for it. Most however, well... they need a little more reality. This is a civil rights movement. It's time we started treating it as such.

      Delete
  7. I am absolutely treating it like the civil rights movement that it is. I have tried posting things I find important on this page and other's like it. I have written and emailed and called and shouted and joined campaigns and cried and cried and cried some more. Again, my kid was THE FIRST to be fully integrated in his school, just a few short years ago. Do you think that happens by being soft? Change takes time. I think you need to remember that your kid is not the first to make this journey and that many others have laid the groundwork. It is not perfect. If a movement isn't evolving and changing with the times, than it must. I feel that this movement has evolved and changed and is gaining momentum. I just don't want to see people get turned off because we are constantly shouting at them. and yes, there is a time and place for shouting. I just don't think it can all be about shouting or people will stop listening. We need to give time for processing.

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    Replies
    1. My son is most definitely not the first child to make this journey.

      I want him to be the last.

      Delete
    2. "If a movement isn't evolving and changing with the times, than it must. I feel that this movement has evolved and changed and is gaining momentum."

      Because initiatives like Down Syndrome Uprising are popping up. Because we are screaming. That is the next level.

      Delete
    3. There needs to be a tax for ignorance. We need to change minds as well as hearts.

      Delete
  8. AND I APPRECIATE YOU LETTING ME RAIL AND DEBATE! Thank you! That's what it's about! :)

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    1. I welcome rational yet passionate debate. The written word always looks more shouty as it lacks the visual/audio cues.

      We all have our own methods of advocating for our children. Mine may not work for some. That is ok. However, assuming that I am screaming all the time as I am calling for action is really feeding into another stereotype.

      Delete
  9. "My son is most definitely not the first child to make this journey.

    I want him to be the last." Yes! We fight so they don't have to.

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    Replies
    1. Yes. Sometimes we fight. A lot of time we negotiate. Sometimes we whisper sweet words. Whatever we choose (which, depends on the circumstances) we just can't stop.

      Delete
  10. Can I hear a "hell yeah"? Excellent post. Thank you. I'm stumped by the sock thing, completely stumped.

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  11. Sometimes people are just waiting to hear things they believe spoken by others. Yes people will be turned off but whose to say why? Because of angry or righteousness or their apathy is challenged? More people will be turned on (Hello, Timothy Leary what are you doing here?)

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    1. I believe that there is a quiet majority who is content at the moment in this cushy slactivism of passing around pictures of cute children with cute, inspirational sayings. However, if we challenge them to go further I think we can really achieve something and make an actual change in the society.

      Delete
  12. Ahhhh a kindred spirit!!! I agree with so many of the issues you have raised in your blog. I am so over the cutsey-fying of children with DS and I never subscribed the sympathy/charity entitlement mindset.
    We, my 21 yo daughter and I, are being the change we want to see in our world and you know, in our small personal individual way, we are making a difference. Kendall is taking her rightful place in the community - and living a full and active life.

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    Replies
    1. I am glad to hear it. Thanks for stopping by. :)

      Delete
  13. That made me mad. It made me sob. And it made me want to let out the war cry for my son who deserves ACTION

    ReplyDelete
  14. free our people
    we will be celebrating our families on world DS day in unity with other families.A week later we will be in our capitol with a dvd for every legislator on the civl and human right of all kids to belong and be included. April 13th we have a big cross disability inclusion and UDL conference. I like sweet photos of our kids when so many want to pity us and dont see though our eyes. Speak ,act ., protest, celebrate and be alive ! Thanks for sharing your thoughts

    ReplyDelete
    Replies
    1. Thank you for stopping by! Thank you for sharing yours.

      Delete
  15. i agree with nearly everything you said...except the part about folks with ds in the news doing "normal" things. those news stories open up people's eyes to the fact that these kids want all of the "normal" experiences. other kids see it and find that it is ok to help lift a kid with ds up. they see how touching it is, and they see how much it means, and they want to be a part of something like that. i know this from experience, as my kid was featured in our local dispatch for being the first special needs student to participate in varsity sports in our district. after that a world of support opened up for my daughter. she grew to be one of the most, if not THE most, popular kids in her high school and has maintained those friends for almost 2 years now. high school kids write to me and tell me about how being friends with her has changed the way they see the world. and much of this happened for her and for them as a result of them seeing her in the paper, and reading our words about acceptance. i have seen high school kids re-post videos of girls with ds winning homecoming queen and saying "i want that to be us, let's do this for hannah!"
    so in these ways, those "feel good" stories are helping gain ACCEPTANCE.

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    1. I'm glad to hear that worked for you and your daughter. That does make me happy to have closure on these things.

      However, I don't want simple acceptance for my son. I want INCLUSION.

      Delete
    2. i could easily add "and inclusion" to my last sentence. wouldn't you call it inclusion that my child got 90% of the homecoming vote for her class? or that "popular" kids ask her to sit with them at lunch and school events, or come to football games just to cheer her on while she cheers? she made the varsity cheer team on her own sweat...but there were 5 girls from the team who asked the athletic director to allow hannah to be on the team.
      i don't believe hannah has ever felt left out. i taught her to be confident and social...to extend her hand and clearly say "hi my name is hannah"...to genuinely care about the people she meets. and THAT is what has made her able to put herself out there and make friends...friends that INCLUDE her. and THAT is going to get her a lot more of what she wants out of life than me screaming and shaking my fists at the sky.
      i believe our kids needs a strong solid voice and this is definitely a civil rights issue...but i also believe we as parents sometimes assume we will have to fight for the things we want for our kids when the truth is a lot of the time, all you have to do is ask.

      Delete
    3. The funny thing is, I'm not shaking my fist at the sky. I'm calmly, yet firmly explaining my stance. Again, I'm glad that worked for YOUR daughter but that doesn't always work for everyone's daughters... or sons. Also, there is a large portion of the population with DS that are dual diagnosis. They need representation too.

      Delete
    4. I think what I am going to take from this is that if I raise my daughter right she'll make it in the world on her own attributes and won't need to be coddled in any way. And since it's me raising her and she is 50% genetically my heir she won't want to be coddled either. She won't her need her friends to do sweet things for her *because* she has Ds, but because she's cool. She won't be in the paper, because if anyone ever suggests that and if it isn't because she discovered the cure to cancer or robbed a bank or whatever, she'll be the first to tell that reported loudly and clearly "Why? Because I have Ds?"

      Think we really could have done so much better than socks, especially since the original one was 'odd socks' which was just plain offensive.

      Also, not shaking my fist at the sky, but shaking my fist and yelling at the media, at politicians, at people in the public eye, at anyone who thanks that my kid needs fixing or implies that she isn't quite as human as others and all that that entails.

      Anger for anger's sake is pointless, but honest outrage that will get noticed and can lead to a momentous change, well, there really aren't that many civil rights movements who've been able to do without and still affect permanent change.

      Delete
  16. and as for the socks...the reason they are doing that is to give a platform, to start a conversation. when you wear the wacky socks, people will ask you why you are wearing them. that's your chance to express your outrage.

    i will be wearing wacky socks on thursday. and when people ask me why i will tell them because only 3% of babies with a prenatal diagnosis of ds will be born because of misconceptions about kids like mine. i will tell them it's well past time for the genocide to stop. i will tell them about Robert Saylor and his senseless death. i will tell them about hannah's endless list of accomplishments...and others who have accomplished even more.

    the socks are also a good way for friends and family to show me and my daughter that they know we live a totally different life, they know we struggle, and that they are with us 100%...even if it means looking goofy for a day. i don't know about you, but i am looking forward to seeing for myself and showing hannah all the pictures of our friends in their crazy socks...just like her :)

    ReplyDelete
    Replies
    1. I'm glad the socks work for you.
      I don't wear socks.

      I'll be painting my nails blue and yellow, I'll be streaking my hair.
      I'll also be actively advocating, especially over at DSU.

      Delete
  17. I do not have a child with DS but have a Grandaughter with an as yet undiagnosed genetic condition. I came accross this blog via Twitter and I agree with such a lot of what you say. I think awareness days have their part to play especially in the case of the undiagnosed or lesser known conditions but I too hate the posters depicting the cute child and the opatronising phrases. I do not use the term 'special' needs as I think it can alienate I prefer 'different' needs, both of my Grandchildren are special but one has different needs. In my opinion if we want those with different needs to be accepted and integrated into society the we need to concentrate our efforts in making sure those needs are met and not putting them on a pedestal so they are easy targets. While I am in rant mode my pet hate is the cutie poster with the words 'God only gives special people a special child' . I use my blogs to raise awareness and recently tackled this subject in a blog entitled ' What makes you so special'

    ReplyDelete

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