ramps, research and facebook status

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MY wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure, but ACCEPTANCE……..93% of people won’t copy and paste this, WILL YOU be one of the 7% that does and make this your status for at least an hour! They do not want to be “fixed” they want to participate in the world to the best of THEIR ability!

~ The status on a number of my friends’ Facebook profiles this week

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Excuse me, folks?

Is this thing on?

I … um … may I have … um … excuse me – you in the back, may I have your attention for just a second please?

Folks, I really, really appreciate what you’re trying to do. Really, I do. I don’t doubt that your intentions are pure and that down to the very soles of your feet you mean well by cutting and pasting this into your status. And I really, really don’t want to be that oversensitive shrew who shows up and makes everybody feel like crap about trying to do some good in the world. I swear, I don’t. But I have to be honest, this stuff scares me. As innocuous as it may seem, I think it’s irresponsible at best and downright dangerous at worst.

With all due respect, how on God’s green earth do you know what ‘children with disabilities” want? Have you asked them? ALL of them?

Disabilities are a broad category, folks. When we say disability, what are we throwing in there? Dyslexia? Non verbal learning disorder? Blindness? Deafness? Autism? Cerebral Palsy? Friedreich’s Ataxia? Epilepsy? Mitochondrial Disease? Cystic Fibrosis? SMA?

I know an adult or a child with every one of them, and well – many of them have made it pretty clear that they’d love to be ‘fixed.’ Getting out of a wheelchair? Living past their life expectancy of 26? Swallowing their own saliva without suction? Um, yeah, a cure would be just fine, thanks.

Now I’m not claiming that everyone wants a cure. I can’t speak for everyone which is precisely what I’m hoping we can all take away from this little exercise. The community that I know best – the autism community – is fiercely and in many cases bitterly divided by this concept.

To dramatically over-simplify the debate for those of you in the cheap seats – some fight for a cure for the often crippling challenges of autism while others believe that it is an integral part of who they (or their children) are and that the ‘real fight’ should be to win understanding and acceptance from the community at large. I know someone will get upset with my broad strokes on this, but if I delve much deeper this will no longer be a post; it will be a book, so please save the hate mail.

I have come to rest smack in the middle ground. Over time I have come to a place where I believe that autism is indeed an integral part of who my daughter is. I can no longer wrap my brain around the idea of surgically extracting it from her being without taking away some of the very essence of who she is. At the same time I work constantly to mitigate her challenges and as you well know, it kills me to see her struggle. If given the option of ‘curing’ her now, I have no idea what I would do. None.

But there are plenty of people in the community who know exactly what they would do. They would grab a cure with both hands and never look back. Most are parents who work day and night to find a cure for their children – many of whom struggle with the most basic of human functions. Many don’t speak. Many have no form of communication at all. Many are in constant peril as they wander off or bolt into traffic with no awareness of danger. Many are heartbreakingly vulnerable. How could I possibly make a judgement for them? How could I tell them what they want or don’t want? How could I possibly tell them what they should or should not fight for? And so, while I may not choose a cure for my child, I will stand by my brothers and sisters in the fight for their right to choose one for theirs. Our children deserve the choice.

In many cases, passion has given way to anger and anger to blindness. I’ve seen people say horrible things to one another in the heat of the moment. It’s easy to get swept up in the madness, but I’ll say it until I’m blue in the face – we can’t ask the world to exercise compassion to our kids if we can’t even manage to show it to those within our own community.

Oops, I’ve apparently gone off on a tangent here. Apologies. I’m back now. Shaking it off – back to the Facebook status problem.

When we start to spread the word that ‘children with disabilities are not looking for a cure’ we begin to make it OK to stop looking for one. Why the hell would we spend vast sums on research into answers that according to the status – nobody wants? If the kids with the disabilities don’t want a cure, why would anyone help to fund the studies that are searching for it? It’s a dangerous, dangerous road.

Acceptance – YES. Absolutely, positively. Acceptance is vital. I will never stop fighting for awareness, acceptance, understanding and compassion. My child needs them to survive in a world that is so often hostile to her very being. And whether or not she chooses someday to take a cure, others will certainly make the choice not to.

But working toward acceptance and cure do not have to be mutually exclusive. While we work to get a child out of a wheelchair, we must also work to make the world accessible to him while he’s in it. Ramps and research are equally necessary. Hell, some of the most important research might well be done by those who need a ramp to get into the lab.

So please, stop and think before you post a sweeping generalization. These are thorny, complicated, emotionally charged issues that just don’t lend themselves well to one size fits all pass it on to everyone you know status updates.

But thank you for doing it anyway. Thank you, because I know that you meant well and I love you for it.

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65 thoughts on “ramps, research and facebook status

  1. God. I wish I had said this. Well, in fact, I have said this, over and over. I find the split within the autism community unbelievable and frightening. It’s an us v. them mentality–the cure folks v. the acceptance folks. It’s like the debates over abortion, and healthcare, and red or blue in this country. Suddenly it’s not okay to disagree. We have to actually hate the other side. And not only hate them, but be downright rude about it.

    I’m standing right there with you in the middle. We can’t know what’s right for anyone else. They call it “choice” for a reason. The challenge here truly lies in how we treat each other, the challenge sits right at the heart of kindness and acceptance. If we don’t treat each other with respect, how can we expect anyone to respect our children? We ALL have differences, different needs, desires, life goals. It’s time to recognize and accept that ramps and research do, in fact, go hand in hand.

    Thank you, Jess. I hope this is another one of your posts that makes its way to over 5,000 hits.

    xxk

    • P.S. You’ve inspired me to change my Facebook status to this:
      [JoyMama] is thrilled to see status-updates advocating acceptance for people with disabilities — yes! — but also wants to remain aware that people with disabilities do not speak with a single voice about the “cure question.” May our acceptance encompass diversity.

  2. Thank you for this thought provoking post and for saying so clearly what many people feel but can not always find the right words to express.

    Jasmin

  3. Ok. That’s it. I officially do love you. There- I said it. I saw that post on FB and went from simmer to BOIL in five seconds. Ironically- everone I knew who posted that didn’t have the first ding dang clue about having a differently abled child. Me being me felt an enormous compulsion to correct them with my own FB status. I posted something like ‘ With all due respect, people with disabilities deserve understanding AND a cure. Autism has reached nearly epidemic proportions and if a cure is not found, it will touch the lives of nearly every family within just a few short generations. FUND RESEARCH PLEASE. We all want and NEED a cure!”.
    To my surprise, some of my dear friends did change their status to what I had posted.
    I wish I possessed your grace and eloquence, Jess. I probably should have chosen better words but I figured what I did write was better than my original less- than- nice thoughts!

    • Hmmm- I guess I’m also guilty for making a blanket statement. My FB post was a highly reactive and hairtrigger response. The thing is though, as amazing and wonderful as my little guy is, I would do ANYTHING I had to to find a cure for what causes his frustration. Seeing other kids laugh at his eccentricities and uniqueness rips a piece of my heart out and I would do anything to make it stop.
      I guess I never thought about how this curse of autism is also the blessing that makes my angel exaclty who he is.
      Please forgive – and thanks for helping me see this all in a different light.

  4. As usual, you have a remarkable way with words to decipher such a thorny subject. The divide in the autism community, whether it’s over vaccines, a “cure”, DAN doctors, CFGF diets, etc. often takes on an edgy, nasty tone that threatens the entire notion of advocacy. And the worst part is, we can have vastly different opinions on these sub-topics while still remaining united on the need for awarenss, acceptance and compassion at the bare minimum.

    You of course put it best: “I’ll say it until I’m blue in the face – we can’t ask the world to exercise compassion to our kids if we can’t even manage to show it to those within our own community.”

    Well done.

  5. Hi! I saw your husband’s post on dailymile.com and immediately clicked over to see what it was all about. First, I want to commend you. You are obviously a great and caring parent who puts a great deal of thought and effort into raising your child. Whether she is able to communicate it or not, your efforts make all the difference in her world (and this holds true whether a child is autistic or not). Second, what a post- you cut right to the core of the status post and blew it out of the water. Extremely thought provoking. Having a cousin with autism, I wonder what he might be like if we found a cure but I treasure the person he is today and strive to be there for him the best I am able. I hope more people like you voice their opinion- in the autism community I know there are many. I, myself, have chosen to remain silent for the sake of avoiding an argument but now may just start talking things through :)

  6. Thank you for this post. Your thoughtfulness, compassion and empathy simply ooze out of every post. I think that the division within the autism community arises from the fact that what is labeled as autism presents in so many different ways and so many different therapies are effective for different children. Because there is not one way to treat autism, every parent wants to justify their choice and their journey by advocating the methods they have chosen and takes it personally when those who have chosen a different path advocate theirs. What is needed most rather than a definitive mitigation therapy path is funding and research so we can understand the spectrum disorder(s) and how to prevent them. Right now we don’t understand them and as our neurologist says “Twenty years from now we are all going to feel like asses when all these different things we currently call autism are proven to be a variety of different disorders with different causes.” I love my little boy in all his quirky fabulousness, but I would not object to him not having to work so hard for every accomplishment. I would never presume to tell another parent what is the right path for their child and I will not assume to tell the world what is right for my son. But I will never stop working to help him develop the ability to express it for himself.

    • thank you, rebecca. this was beautifully put and i couldn’t agree more that the umbrella over the vast array of disorders that share similar enough traits to share the autism label is far, far too broad.

  7. I have wanted to write about this so many times – but just couldn’t find the right words.

    Great job, Jess! I absolutely love your eloquence on the subject. You truly said this far better than I could have.

  8. I have been stewing over this Facebook status that I have been seeing all week in all different forms. My view of this status is with an “autism hat” welded onto my head. Try as I might, I can never take it off. My son’s autism consumes my life. Every minute. While I do want acceptance for my son (and for all people, both typical and non-typical), I would lay down and die right here right now for a cure for autism. Not just for my son, but for all the people I have met along the way who are affected. While a cure would obviously change him, it doesn’t mean the essence of who he is would change. Wanting this doesn’t mean I don’t loe him and respect him for who he is just that I want more for him. I have fantasized about what he would be like, who his friends would be, just how wonderful it would be for him if the world wasn’t such a strange and confusing place. Yes I want acceptance but I also want a cure.

  9. I am right in the middle with you. You really have articulated what I think a lot of us feel. People mean well, and when my family started cutting and pasting it I knew they were doing it because they love me and my boys… I wasn’t sure what to do. Now I’ll point them towards this post. Awesome writing, Jess, as always.

  10. Powerful and incisive yet also incredibly diplomatic. So touching and thought-provoking. So much so that I actually pasted this on my FB status, very rare for me…hope you don’t mind.

  11. I try to keep my FB statuses strictly about what I’m eating, watching, or, in flights of fancy, quoting some obscure Broadway musical.

    I do appreciate a good link to some research or article, where people actually have to stop, read, and decide for themselves – not just simply cut and paste and post, or god forbid – “like” something.

    Thanks, Jess, for uttering what is on my mind. I often don’t know how to fish out the thought and put it on paper. Er. The screen. Whatever. You know.

  12. Brilliant post! So was Mama’s here. So was Lexicon. And don’t even get me started on Welcome to the Club. It changed my life, and I’m so glad to know about the profound way it has affected others too.
    MY wish for 2010 is that Jess Wilson will keep gracing us with her wonderful writing and THAT will do wonders for awareness, acceptance, understanding, and compassion.

  13. Thank you for this. The version circling thru my FB friends was specific to autism (rather than saying “disabilities”) and I struggled with how to say “Thanks, but no thanks.” to so many people who meant well. You managed to say it perfectly.

    • kk – the first one i’d seen was autism specific as well, but by last week it had morphed into the ‘disability’ version.

  14. Oh, the difference one word makes: If these statuses had only said, “children with autism aren’t looking for JUST a cure…blah blah blah.” You’ve spoken so eloquently what I’m sure many of us feel.

    I don’t know that I’d want to “cure” my son…he is who he is…but it sure would be nice to “cure” the social skills, speech delays, etc. I sit firmly on the fence, also.

  15. There have been quite a few derivatives of this status, but this one I did put as my status.
    “Please put this on your status if you know someone who has AUTISM. Autism affects 1 in 110 children, 1 in 70 boys. Scientists are searching for a cure but my wish for 2010 is that people become more aware of early intervention and treatment. AWARENESS, ACCEPTANCE and UNDERSTANDING. Lets spread the word…. Will you make this your status for at least one hour? Thank you.”

  16. Someone may have already asked this…i didn’t read all the comments ahead of mine, but how would you feel about me posting a link to this post in my status?

    I’ve seen several versions of the status you wrote at the beginning starting a few weeks ago. Some about autism. Some changed slightly…some said “a cure”, some said “acceptance”…but like you, I just kept thinking so much of what you wrote above. We can not oversimplify something so complicated and so personal.

  17. A Friedreich’s ataxia reference! Whoot, whoot! As I see from these comments, everyone agrees you are brilliant. Far be it from me to disagree. I want a cure … bad. But at the same time I do know that the compassionate, introspective, hopefully witty person that I am is due in some way to FA, so I don’t know. But to be able to run …

  18. Ah… I felt weirdly uncomfortably when I saw this status update circulate a few weeks back. I thought, “I should post this because I care about spreading the message that we should love and accept all members of our society,” but I really felt that there was something wrong with it. I just couldn’t put my finger on what it was. It made my stomach feel squirmy. Maybe I should have listened more to what I’m always telling my students: that you can’t make sweeping generalizations (how many of you ever wrote a high school English essay that began, “Throughout time, all people have blah, blah, blah” because you couldn’t think how else to start it? Grrrr!) But, since I’m apparently too dumb to listen to myself teach, thank you for articulating my squirmy feeling!

  19. guilty…I posted it…only because I didn’t want to post the color of my bra for breast cancer awareness.
    Chalk it up to a bipolar moment.
    Forgive me.

  20. Hi Jess,
    Thanks for this post. There’s a lot I agree with here, but I think my difference is one of a few degrees only. Recently I published this piece: http://susansenator.com/blog/2010/01/healthcare-should-be-for-all.html which discussed this same question. I lean towards autism acceptance, not because I want to speak for anyone, but because I know so many autistic adults. I have heard how all of the cure talk and the autism-is-a-monster talk makes them feel. I have also seen, too many times, that those autistics whom we think are unable to understand or communicate, actually can understand what we are saying (my Nat included). I do not know what some of them may feel if they heard all of the autism-hate talk. So I’m careful about that.

    I also feel that so much of the energy and money focused on the cure could also be well spent towards helping the adults or soon-to-be autistic adults (and all of our kids are getting there someday)to live in this world. That takes money and attention. As Jess says, neither side can exclude the other. Being in the center of cure vs. acceptance is probably a good place to be.

    That having been said, I do feel that all of our lives would be easier if there were a cure for the symptoms of autism. I just want to be very very careful about some of those who might not be able to separate their autism from themselves.

    • susan ~

      i couldn’t agree more that there HAS to be incredible sensitivity in the language of and message around any talk of ‘cure’.

      i think of that (to my mind) God-awful video that autism speaks put out a few months ago. i had a VERY emotional reaction to its demonization of autism. as you and i have both said, it can be very difficult to separate autism from people with autism. watching that video, i could only imagine that a young person would have seen it as an indictment on their very being. the message that autism will bankrupt families, break up marriages, destroy relationships = you are responsible for all of those things.

      the day that video came out i spent a very long time on the phone with mark roithmayr, the president of autism speaks telling him why i felt that the video was egregiously insensitive and damaging (detailing the reasons above). to his credit, he took the call likely knowing exactly what i was going to say .. lol

      so, perhaps i should add that while i will stand by those who fight for a cure, i will also tell them when i think that their approach is hurtful.

      and as i do, i will continue to try to do what i hope we all can do – keep the tone of my commentary respectful and constructive. though we may come at this from very different perspectives, we’re all working toward the same ultimate goal – raising happy, healthy, fulfilled human beings.

  21. Jess, thank you for putting into such eloquence what many of us, myself included, felt when we saw that pop up on fb. Hope you never stop writing. Never ever ever.

  22. Love, you took the words out of my mouth. I am shocked at the tone in the autism debates. Which is one of many reasons I love you. You are all about inclusion, commonalities, connection. Brilliant post.

    And you actually OWN a bra that’s black with white polka dots?! YOU ARE MY ROLE MODEL! Obviously I need to go bra shopping.

  23. Thank You for your words. I just found your blog today (1/24/2010). I have to completely agree with you about this Facebook status mess! I replied to many of those posts that my loved ones put thinking they were somehow supporting my son, when in fact it was quite offensive. My son, who has Fragile X syndrome as well as Autism, could care less about what other people think of him, and is never looking for acceptance. My reply to those posts may have been uncalled for, (I put… Frankly, Rilee doesn’t give a damn,).
    I look forward to reading more of your posts in this blog.

  24. This is exactly what I was trying to say in the comment section of my niece’s status (in two sentences or less). I also used the phrase that the two do not have to be mutually exclusive. One of her fb friends replied, “If people had more acceptance, we could get down to the business of finding a cure.” Probably true.

  25. your words put it perfectly. I thought the same way when I saw this facebook status. I was annoyed, but couldn’t put all the reasons why. I felt like it was a post from someone would didn’t actually know or love someone with a disability. Like they didn’t really “get it.”

    I decided to post a similar one, but edited it because the “acceptance vs. cure” part wasn’t something I agreed with and I didn’t think it was as important as letting others know how common ASD was (more than juvenile diabetes, cancer, and HIV combined). A few others copied it, but I doubt it got much further than my circle of friends.

  26. Coming to this kinda late..

    Well done, Jess, well done.

    I want both, well, actually all three. ACCEPTANCE for those already affected, a CURE for those affected that want it, and PREVENTION so that we can put a stop to all those families that join this *club* on a daily basis.

    It’s no secret on which side of the great divide I stand. I tried the being in the middle thing. It’s not working for me. I see too much suffering, in the kids and in their families, to not want a cure, BADLY, for them.

    Do I want a cure for my S? When I started on the ‘autism can be treated’ road, oh YES, I wanted a cure. Live was.. well..very difficult, to put it mildly (Asperger’s = autism lite? not quite.. not if you add a whole host of other issues in the mix).

    I’ve been on the ‘this can be treated, our kids have serious medical problems that affect their neurological wiring somehow, aggravating the *autistic* symptoms*’ for 6 years now. And our lives, S’s life, are VASTLY different from where we were 6 years ago. And yes, pursuing the ‘this can be treated’ road did ruin me financially and it has been the kiss of death to my marriage (which already had huge big cracks in it.. autism and how each of us choose to deal with its implications was simply the final blow). And I have no regrets, in fact, I’d do it all again in a heartbeat.

    And no, pursuing this path has not taken away the essence of who S is. It’s still all there, all that wonderful unique wiring that makes him who he is. But NOW he can actually USE all those inate abilities that he has, and he is doing that while becoming (work in progress) integrated in the tricky ins and outs of the Middle School social scene. (and S knows very well that all the stuff we do is not to *stamp out the autism*, it’s to address his gut disease, his immune dysfunction, his mitochondrial dysfunction. Never ONCE have I said to him ‘we do what we do because you have an ASD. No, we do what we do because you (and your NT brother too be the way) have a slew of medical issues that need to be addressed.’)

    That being said, choosing this path has been the right path for us. Doesn’t make it the right path for somebody else. And I respect that – live and let live after all. I want there to be a choice, a choice for all of us. So each of us individually can decide what may be best for our child(ren).

  27. I think a lot of adults who are disabled and are disability rights activists are uncomfortable with all the baggage that goes along with “cure” and the organizations that promote that agenda.

    In social work grad school, I took a class on diversity. We had a speaker on disabilities whose words have guided my thinking on this ever since. She was a woman in a wheelchair who said that when she was young she hated the Jerry Lewis telethon. It scared her because from what Jerry said, she was convinced that she was going to die. As an adult, she hated it because of the way the children were paraded around and exploited. That the point of the telethon was for people to give money because they felt so sorry for the “victims” of muscular dystrophy.

    Furthermore, because of her condition, her legs did not grow to typical adult size. Her parents, wanting her to look more like everyone else, put her through many surgeries to extend her leg bones. She said the thing that bothered her most about her body were those scars–not being unable to walk.

    I think this what Autism Speaks did when it put out the “I am Autism Video.” It was just another way of saying “look at those people, don’t you feel sorry for them?” People don’t want to go through their lives as the objects of others’ pity.

    Maybe instead of cure it is better to think of treatment. Treatment can involve different things for different people, but it would be something that improves peoples’ quality of life and their functioning in the world. And insurance to cover all those treatments! And, yes civil rights and understanding too.

  28. VERY diplomatic & balanced piece!

    I admit that there are days I am “anti-cure” mentality & days where acceptance is much more important to me. I think that when Fiona was first diagnosed as Profoundly Autistic (48 on the CARS scale), I would have given a kidney without anasthetic for a “cure”. Today, I am a warrior for acceptance — BUT I also now have a 5 year old, gifted, highly verbal daughter who is barely on the spectrum (30.5 at last review) so I don’t face what so many other autie parents do.

    I’m glad you invited me to be part of this discussion! Thanks so much!

  29. Thanks Jess for your best-ever discussion of this issue. I had no idea, before a week ago, about the controversy surrounding the “My wish for 2010…” meme. It came into my view through a casual post, of FB, of course, by my wife, at the request of a young girl with CP who my wife had been teacher’s aid and friend for in middle school a few short years ago.

    It has, for reasons far beyond it simplistic message, ripped a hole in the space-and-time fabric of our extened family. I am sorry now that I did not understand how this phrase had already caused so much division.

    Perhaps I read too much into it, and the author of it should have been a little more artful in designing the quote.

    Based on my understanding of our young friend’s meaning, it was my belief that it had nothing to do with, in any absolute sense, wanting or not wanting a cure for a disability. As it spoke to me, it meant this.

    To the average Person who has crossed the path of my life:
    I do not want a cure, from you.
    I want acceptance, from you.

    In the end it cuts through the question of what would any affected person do, either as a parent of or as a person targeted by the cure. That will be their choice alone, and how they face it is their path. Your own pondering of that dilemma clearly shows the profound difficultly of assessing that possibility.

    Sorry to go on for so long, I have no rant control. But I just wanted to thank you so much for helping me understand these issue a little bit better.

    — rob

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