Friday, January 15, 2010

The Motherlode

So, through a series of connections that are not quite clear to me, my post from Contrarian about a possible "cure" for Down Syndrome was picked up by the New York Times blog on parenting, called Motherlode. Quoting me as well as Dr. Salehi, the author of the original research study, the post asks "If there were a cure for your child that would fundamentally change who he is, would you welcome it?"

Parker Donham, Contrarian blogger (and my father-in-law) contacted me to give me a heads up about the post, in particular to warn me that there were reams of comments on the NYT post, all of which were firmly entrenched in the opposite position to myself. He was afraid I would be hurt. I had no such fear. I know that my position is a minority one. When you throw your lot in with marginalized people, you get marginalized. I understand that. And I would suspect that NYT readers might be particularly unsympathetic to an argument that asserts the value of people with intellectual disabilities.

But booting up my computer the next day and clicking on the Motherlode link, I was surprised by my own reaction to the comments I read. It is not easy to hear people, even strangers, call you selfish, patronizing, uncaring, a bad parent. Especially when people call you that in very articulate, well-written letters to the New York Times. I will admit, I was hurt. I couldn't make it past the first page of comments. And aside from being hurt, I was unsure of what to do next. Do I respond and open myself up to further criticism? Do I ignore it, knowing that the online attention span is even less than the proverbial fifteen minutes? But what about my supposed commitment to advocacy? Do I cut and run as soon as it gets difficult?

Well, thank God for Silas. Just as invested as I am, Silas took the bull by the horns and posted his own comment to the NYT blog. (His is the only comment, by the way, to be highlighted by the author of the original post.) He also contacted other friends and activists to ask them to weigh in on the conversation, in hopes of providing some balance.

If you go the Motherlode blog you can read the original post and the comments. You might even want to register and make your own comment. Following you can read what Silas wrote. And further down in this blog you can read my original post that has caused such a stir.

I should say that I think I am over my original shock and hurt at the harsh critique of my position. I have heard from people, both directly and indirectly, who share my unfortunately minority opinion. And I have seen even more clearly what a dangerous place this world can be for people with intellectual disabilities.

Silas's recent post...

First, the disclosure: I am Jenn Power's husband, father to Jacob and Josh, and son to, the blogger who got all this started. I have spent my adult life living and working intimately with people who have intellectual disabilities.

Many of the contributors to this discussion seem to be imagining a magic pill without risk or side-effect that would remove the intellectual impairment associated with Down Syndrome. Medical treatments like that do not exist. Of course Jenn and I want our children to have every advantage, and the fullness of potential, which is available to them. Our boys have glasses, they have tubes in their ears, they attend school as well as physio-, occupational, and speech therapy, a clinic that focuses on eating difficulties, an adaptive swim program, a youth group, church, friends' birthday parties, etc. I home-schooled them for a year to get ready for regular school. But we would not let an enthusiastic medical researcher take a potential chemical blender to their brains in infancy. Thank you, no. In that sense, our boys are just fine the way they are.

Many of you have posed questions from the imagined viewpoint of a person with a disability: if you had Down Syndrome, wouldn't you want to be "cured"? Can you imagine a person with no legs NOT wanting a treatment that would give him legs? It is a sad observation that the voices of actual people with disabilities are usually absent from discussions of this type (thanks to Ingrid in San Francisco for bucking that trend). In fact, their answers to these questions are often not what you would expect. I first contemplated that idea when I heard a CBC radio piece produced by Dave Hingsburger, a counsellor and disability rights activist in Toronto. Over the course of a two-hour program, Hingsburger talked to many members of the disability community, including people with Down Syndrome, as well as a man who has no legs. At some point in the course of other discussions he asked each person he talked to whether, if presented with a pill that would get rid of their disability, they would take it. Without exception, they all said no.

At the time, this was an earth-shattering notion for me. But the fact is that I know many people who have intellectual disabilities. No-one I know sees themselves as diseased, suffering, or in need of a cure. So who is really imposing their viewpoint here?

Jenn framed her response to this medical research in terms of the benefit she has received from her relationships with people with disabilities, and the benefit society as a whole stands to gain from them. Unfortunately some of you have construed that to mean that people with disabilities should be kept in a limited, suffering state so the rest of us might benefit. Several of you even made the very hurtful comparison between our boys and "therapy animals".

Perhaps it is a symptom of the way people with disabilities are devalued in our society that we so often feel the need to justify them by naming the benefit other people receive from them. No other group in society needs to do this. However, that is not the basis by which we make decisions about our boys' lives. Everything we do (including the hypothetical rejection of experimental brain treatment) for them is with their best interests at heart. And to respond to other posters, we have not forgotten what might happen to our boys when we are no longer around. That is why our whole lives are devoted to people with intellectual disabilities, from our parenting to our professional lives with L'Arche to our involvement in the local school to our involvement in discussions such as this one. A society that recognizes the gifts of people with disabilities is one that goes beyond inclusion and tolerance to real relationship.

People are complicated organisms. Tinkering with one aspect affects a host of others. As a society we tend to overvalue independence and intellectual competence. These things do not bear a linear relationship with happiness or quality of life. There are a lot of independent people who lead very lonely lives. In my experience of people with intellectual disabilities, the ones who are more capable and independent are often the ones who have the hardest time finding a place of belonging, and who therefore lead lives of greater suffering. I don't mean to say that capability is a bad thing; I just mean that it is complicated, and that makes the ramifications of this treatment hard to predict.

We don't know whether this potential brain treatment will lead to greater quality of life for people with Down Syndrome. We don't know what its risks and side-effects might be. We do know that people with disabilities are undervalued, insufficiently supported, and too seldom consulted or in control of the decisions that affect their lives. Why don't we put more work into supporting the weaker members of society, combating bullying and abuse, and discovering and learning from the experience of people who have disabilities, and get less excited about expensive, unproven treatments that may do more harm than good?


Tara said...

WOW! Your husband rocks! :) That being said, I did not read the comments on the article because, sadly, I can more than guess as to what they say. I have read too many such comments and they fill me with an anger and a fear which surprises me. I have learned to read a wonderful article on Ds and then skip the comment section because I don't like the taste of bile. I commend you for stepping out and being brave. I commend your husband for manning up and defending you and your boys. Kudos to all of you!

Joel B said...

Hello Jenn,

Thank you for your thoughtful blog. I am also concerned about how we often over value power, money and alleged intelligence. I ahve spent the past thirty years working with and for people who have disabilities. It ahs been my post graduate classroom as they have taught me about life from many perspectives that noone else could.

I also blog and it is entitled A day in Helping where I address issues of service and what it means etc.



Anonymous said...

No matter how perfect we all think we are, we all have our"disabilities".
See Jenn and Silas , they believe in people, regardless of how they present.Everybody has value.
This whole subject makes me think of Flowers For Algernon.
I am sure there are those for whom "normal" at any cost is preferable ! That's OK. But in the mean time,we should Live everyday completely. Love for the joy of loving and each day ,walk a mile in somebody else's shoes before we judge. Way to go Silas and Jenn. I am so proud of you !

Queenbuv3 said...

Amazing and articulate response!

My son is considered severly Autistic and has Epilepsy. I accept and love him as do my husband and his sister. As Casdok said "Acceptance does not mean doing nothing" We help our son to learn new skills and do everything we can to help him reach HIS potential. We don't expect him to be "normal", whatever that is, and don't view him as a set of inabilities and shortcomings but as a PERSON with possibilities. We have never pursued or dreamed of curing him. God doesn't make mistakes. I don't think we should be messing with our children's brains and bodies with potentially unsafe and unecessary chemicals and treatments.

We are all made the way we are for a reason. I have learned over the years that even things that happen that might seem negative are opportunities for learning and that everything happens for a reason.

Kudos to you and your husband for taking a stand. I am now following your blog.

There are times I wonder why I blog about my son and our family life. I want to show people what a loving and happy family I have BECAUSE of our challenges not in spite of them. Our son's Autism has made us better people and made us closer as a family. Our son is a blessing and not a curse. Those of us going about our daily lives with joy and gratefullness with our children with intellectual disabilities need to keep putting our point of view out there.

God bless you and your family.

Casdok said...

The last paragraph summed it up beautifully for me.
Maybe in time the minority will become the majority.

Anonymous said...

What a perfect position to take in dealing with an abilist world. I have found you via Robert Wilson who says he worked with your community in the past. I also am a boggy pal of Casdok! Small world. I have an 11 year old daughter with DS - a completely undeserved blessing and blog about our lives exactly for the reasons you describe. Thank you for your writing.

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