Domenic Lawson recently wrote about advances that may eventually lead to a cure for people with Down syndrome, like his daughter Domenica.
Yet imagine if someone at Johns Hopkins or Washington really did discover a way of therapeutically removing all the extra genetic information within the 21st chromosome that causes the mental disability within the person with Down’s. Would this be an unmitigated blessing for either the child or its parents?
You might think so: but in a recent survey of Canadian parents with Down’s syndrome children, 27 per cent said that if there were a ‘cure’ for their offspring’s condition, they would not use it, while a further 32 per cent said they were unsure if they would take advantage of it.
This result was described as ‘surprising’ by the New York Times — but it is not really surprising at all. My 17-year-old daughter, who has the condition, is what she is; and that is the person her parents and elder sister know and love. If she were genetically re-engineered, would she be the same person?
She would certainly be very different — with the ability to count or read a clock; possibly even to penetrate the secrets of calculus. But those are not the sort of attributes which define what we love in those to whom we are closest.
This drew an angry response from Meg Henderson, whose daughter Louise has autism and brain injury. While she certainly deserves sympathy for the very difficult life she is leading, her response is so similar to those that I and other people who try speak positively about disability often receive, that I am going to take some time to look at it critically.
Like many people who insist that autism is a condition that needs a cure, she is talking about someone who is impacted by things other than autism. Louise was brain-damaged by physical abuse before Henderson and her husband adopted her. She has an undisclosed mental illness as well. I hope we all agree that brain damage is a terrible thing, especially when it is caused by abuse. Doubtless many of the things that make life with Louise difficult do come from her autism, but many parents seem unable to separate autism itself from co-morbid conditions. Saying autism can be okay is not saying that having constant seizures or painful gut problems is okay. Although those things often accompany autism, they are something separate from it, which is why they are not part of the diagnosis itself. I don't think anyone is saying we should not try to find treatments for seizures, I really don't.
Anyway, what is offensive about Henderson's piece is that because her life is unhappy, she insists that every family which includes a child with a disability is also unhappy:
I wouldn’t wish the hell we have endured on anyone. Because for many average families such as mine, having a handicapped child is hell. You enter a black tunnel from which you never escape.
Mr Lawson says that having Domenica — whose godmother was Princess Diana, a family friend — has taught him wonderful life lessons.
I’m sure this is true for him. But I must confess that I am tired of hearing about devoted parents who say that seeing the world through a handicapped child’s eyes is a blessing.
Please forgive me for sounding so cynical, but I’m convinced that parents say this only because they need to find something positive in their difficult, if not miserable, situations.
Let me tell you the unvarnished truth based on my experiences. There is nothing positive about a child’s life being limited by physical or mental difficulties — not for the child, and not for its family.
Every family with a handicapped child becomes a handicapped family. That is a fact.
She has an absolutely valid point that it is easier for families of privilege to enjoy a child whose care is expensive. I'm pretty sure, though, that Princess Diana was not godmother to 27% of the children with Downs in Canada, who Lawson said would also reject cures for their kids. It's entirely possible that if the children of all those parents had the same sort of challenges that Louise has that they would all want their children to be cured. They are probably more fortunate than she is, and I can understand being jealous of that. But I don't think that entitles her to deny that their experience is real.
She describes her life as a living hell for her entire family but also describes suing to keep Louise from being put into a boarding program. I understand the desire to keep a child at home at all costs, I really do, and I respect it. But Henderson is very angry, and I think getting Louise away from that anger was probably a good goal.
The saddest thing is that her mom is still so angry when Louise seems to be in what many parents would consider an ideal situation for someone with her challenges:
She is now 34, yet will never have her own home, marry, have children, a job or drive a car, and I see nothing on that sad list I wouldn’t change if I could. Wouldn’t any parent?
Today, our daughter lives in a special village near our home in Fife. It’s a wonderful, leafy campus, staffed by trained carers, set up to house adults with handicaps of every type. It has two farms, various workshops, a bakery, a café and a supermarket — all run by the residents.
Louise does live the best life she is capable of, working in the bakery and the shop.
The local authority pays for Louise’s care, but like all parents in similar positions, we live in constant fear that government cuts will bring this stability to an end.
Louise has been there since January 2012, and for the first time in her life she has friends. Everyone there has some difficulty, and they all support each other.
There’s a closeness and friendship there she has never experienced from the general public, and never would. She is valued as a person, not looked on with the pity, embarrassment or ridicule that have marked her entire life.
So now she is happy — and so, for the first time, are we.
Even so, she often pops up in my d reams as a completely normal young woman, and I wake in tears because I know that she will only ever be like that in my dreams.
Again, our experiences are all different from each others. I can certainly do a better job of remembering and recognizing that, too. Your life is not like mine, and it is just as valid as mine. But mine is just a valid as yours.
GRASP publishes a letter from nine-year Autism Speaks volunteer Michele Montanez to new president Liz Feld on why it is important that the organization stop using the word "cure":
For many years, autistics themselves have been fighting to be heard. Their voices are getting louder and louder. We purport to speak for autistics as well as the parents that form our backbone. The vast majority of them, the ones that advocate for true acceptance in our world of autistics as they are instead of as close to neurotypical as we can therapy them into, are emphatically opposed to the word cure. We promote advocacy and acceptance, and yet when the very people we promote advocacy and acceptance define what that means for themselves, we continually ignore it. Ironic for an organization who’s tag line is “Autism Speaks. It’s time to listen.” We are not listening to the group who matters most in our mission. Our attempts to get autistic self advocates to the table to work with us, instead of vilifying us, will never work as long as we continue to overtly, persistently, and knowingly continue to be offensive.
Thanks to Michele for referencing this piece I wrote about why it bothers me that Autism Speaks-branded school supplies being sold at Walmart carry this message: "6% of the net proceeds will be donated to Autism Speaks, a non-profit organization dedicated to finding a cure for Autism."
Thanks to Amy Sequenzia for pointing out to me that she did.
Today, Autism Speaks is sponsoring a conference for families and professionals called "Treating the Whole Person with Autism: Comprehensive Care for Children and Adolescents with ASD."
It featured my favorite neurotypical autism expert:
Peter Gerhardt, Ed.D., director of the McCarton Upper School and chair of the Scientific Council for the Organization for Autism Research, emphasized the need to continually think of the changing care needs across the lifespan. Dr. Gerhardt stressed the importance of making optimizing adult outcomes a much higher research priority. In particular, he noted the need to identify and focus on meaningful knowledge and skills vital for independence and fulfillment.
And then there was a lot of stuff about gut bugs and genetics.
Chief science officer Geraldine Dawson said:
"The theme of this conference, treating the whole person, reflects our ultimate goal of helping individuals with ASD to have healthy and successful lives."
But is that the ultimate goal of Autism Speaks? Or, as they are telling Walmart shoppers across America, is Autism Speaks "dedicated to finding a cure for Autism"?
It's nice that the Twin Mills Camping Resort is raising money for Autism Speaks. It would be even nicer if the version of Awareness that Autism Speaks espouses in 2012 included telling them that many autistic people feel hurt when NT people give events to raise money for us names like "Camp for a Cure."
Oh-- and Autism Speaks is advertising on thAutcast today! So they can pay for you to read why I think eugenics are a major part of their agenda.
Thanks, Autism Speaks!
Autism Speaks made me buy pens at Walmart.
When my friend Paula C. Durbin-Westby posted about "school supplies" with Autism Speaks branding being sold at Walmart, I had a reaction that could be described as both stereotypically gay and snobbish.
That's tacky and sort of pathetic. How come Autism Speaks always gets down scale partners like Walmart and White Castle? It's like they want to be Komen for the Cure's lowbrow baby brother. Well, at least it's better than the meat-and-grease scented candle.
I posted Paula's picture on the thAutcast Facebook page because I thought the items were an interesting curiosity. Without comment because I thought she had an interesting point of view on it, although one which I did not especially share:
Acceptance? Really? You have to be kidding. Autism $peaks is now in the "acceptance" business. Autism $peaks' marketing slogan for this is "Acceptance and Awareness just got a little easier in our schools.. Autism Speaks school supplies available at WALMART!"These are available in the *school supplies* section of Walmart. This photo is from my local Walmart. These are being sold in the school supplies section because, you know... children and autism are totally related. Lots of children will probably want cool school supplies with blue puzzle pieces on them. Puzzles are fun, right? Kids like puzzles. For those kids who don't like Autism Speaks, or don't want "autism awareness" shoved in their faces at school, this is going to be a problem.
And all hell broke loose. Lots of anger. One person asked if Paula was human. People are still leaving comments and we're approaching 300 of them.
I guess I should not have been surprised, but I was. I posted a link to this video of GRASP's Michael John Carley explaining "The Comic/Tragic Politics of the Autism/Aspergers World" because I think it provides the best explanation of why there is a longstanding conflict between Autism Speaks and autistic self-advocates.
I signed Paula's petition.
And then I was ready to move on.
My friend Jennifer is very excited by some of the things that she saw and heard at the recent Autism Speaks conference in Chicago. I'm hoping that she will write about it here, because I think there is genuine positive movement within AS that I want to recognize and encourage. That's what I was thinking regarding Autism Speaks yesterday.
And then Paula posted something else about these "school supplies" (which really look more like "office supplies" to me, but Autism Speaks is calling them "school supplies"). They all prominently display this message:
Every purchase supports Autism Speaks, the largest research & advocacy organization.
6% of the net proceeds will be donated to Autism Speaks, a non-profit organization dedicated to finding a cure for Autism.
Them's fighting words.
Autistic people have been asking Autism Speaks to stop using the cure language since long before there was an Autism Speaks.
Gavin Bollard, who has Asperger's syndrome and sons on the autism spectrum, talks about hating and curing autism:
There are parents out there who say that they hate "autism". I can see how it presents a large target but actually, it's not "autism" itself that you hate. It's the inconvenience, embarrasment, suffering and just plain hard work associated with some parts of the autistic condition that you hate.
It would be better if we could be more specific about the things we hate. Clearly we hate having to clean up after a toileting accident for example. Make it clear though, it's about US, the parents, not the children. . .
You see, if you simply "hate autism" then your only option is to fund a possible cure or worse, to try dangerous therapies (brain surgery and chelation) in an attempt to eradicate what you see as the problem.
Personally, I don't believe that there will be a cure in my lifetime. In fact, short of some kind of thoroughly evil sterilisation process, I don't think there will be a "cure" at all.
I have some qualms about the racial analogy Gavin uses in the first part of the essay, but I think the points he is making throughout are significant and worth thinking about.