I was hoping my agitated reaction to the New York Times' Motherlode column “Should Down syndrome be cured?” would fade, but it won’t.
The post covers research from Stanford University that shows that a drug can temporarily restore some learning and memory skills in mice with Down syndrome.
Jenn Power, a Canadian mom of twin boys with Down syndrome, said she greeted the news with tears. “I find it hard to read this article without hearing a judgment on the value of my children, children who have transformed my life and the lives of many others – for the better…In the debate surrounding disability, there is an assumption that we all agree on a definition of what is good, what is better, what is the ideal. Who decided that smarter is better? Who decided that independence takes precedence over community? Who decided that both the individual and the society are better off without Down syndrome?”
Contrary to the Motherlode headline, lead researcher Dr. Ahmad Salehi in the Contrarian notes that his findings are “far from being a cure,” but could eventually lead to greater independence in people with Down syndrome. “There are many places in the world that may not look at Down syndrome the way that Jenn does,” he writes. “For these children, finding a way to even partially restore cognition or preventing further deterioration in their learning and memory would be extremely important and helpful in their very competitive societies.”
The research (while in its infancy) sounds positive to me.
What bothers me is the way the media have framed it as a full-blown cure – as in eradication of people with Down syndrome – and the slew of reader comments that imply life with intellectual disability is somehow less than human.
“The reason it is called a disability is because it is a lack of something…that makes a complete human being," one reader noted. "That is a tragedy; it is not another equally good form of personhood.” Says another: “You'll never meet a doctor or a lawyer with Down syndrome.”
Is a good life – a happy and meaningful life – tied to brain power? Are doctors and lawyers inherently better “people?” What does it mean to be a good human being? Are we less human when our academic intelligence is limited?
Another Motherlode reader equates learning ability in people with Down syndrome to her suffering with untreated bipolar disorder. But does having a low IQ, in and of itself, cause physical and mental suffering?
I can only look to my son, Ben (in photo above with sister Lucy), who has mild mental retardation, in trying to answer this question.
It seems to me that the bulk of suffering for children and adults with low intelligence comes from being judged and excluded by others.
In Ben's case, I think he experiences anxiety and frustration, and that is a form of suffering. But for the most part I do not see his intellectual disability causing suffering.
Is he suffering when he’s laughing hysterically while playing computer games designed for younger children? Is he suffering when I pull him around on a swim noodle in the heated pool at Bloorview – or when he balances on the swim noodle himself and pretends he’s a cowboy? Is he suffering when he looks down from a height of 20 feet to see a group of children cheering his descent on the zip line at camp?
My son does have physical pain, and that is a terrible form of suffering. But I don’t believe that his intellectual disability causes him to suffer.
Years ago I was asked to fill out a survey by genetics counselling students about aborting fetuses based on disability and quality of life. It bothered me tremendously that there were questions like: “Would you terminate if you learned your child had mental retardation that would affect his quality of life?”
People with mental retardation are marginalized and discriminated against in our culture. That’s a social problem.
Does intellectual disability limit one’s ability to have a rich, joyful life? I don’t believe it does. I do believe it makes life harder – much harder – but I don’t equate a good life with an easy life.
I did like this comment on the Motherlode blog, from the mother of a child with Down syndrome: “It is hard to believe that she won’t be able to solve problems or read literature. And yet it is easy to believe that she will rush to a friend, or even a stranger, in need. Easy to believe she will bring joy and light and life. Can you live a full life without ever solving a quadratic equation? Without reading Dostoyevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.”
What bothered me most about the Motherlode comments was the hatred and fear that intellectual disability seems to elicit in so many otherwise educated people.
What did you think?
The post covers research from Stanford University that shows that a drug can temporarily restore some learning and memory skills in mice with Down syndrome.
Jenn Power, a Canadian mom of twin boys with Down syndrome, said she greeted the news with tears. “I find it hard to read this article without hearing a judgment on the value of my children, children who have transformed my life and the lives of many others – for the better…In the debate surrounding disability, there is an assumption that we all agree on a definition of what is good, what is better, what is the ideal. Who decided that smarter is better? Who decided that independence takes precedence over community? Who decided that both the individual and the society are better off without Down syndrome?”
Contrary to the Motherlode headline, lead researcher Dr. Ahmad Salehi in the Contrarian notes that his findings are “far from being a cure,” but could eventually lead to greater independence in people with Down syndrome. “There are many places in the world that may not look at Down syndrome the way that Jenn does,” he writes. “For these children, finding a way to even partially restore cognition or preventing further deterioration in their learning and memory would be extremely important and helpful in their very competitive societies.”
The research (while in its infancy) sounds positive to me.
What bothers me is the way the media have framed it as a full-blown cure – as in eradication of people with Down syndrome – and the slew of reader comments that imply life with intellectual disability is somehow less than human.
“The reason it is called a disability is because it is a lack of something…that makes a complete human being," one reader noted. "That is a tragedy; it is not another equally good form of personhood.” Says another: “You'll never meet a doctor or a lawyer with Down syndrome.”
Is a good life – a happy and meaningful life – tied to brain power? Are doctors and lawyers inherently better “people?” What does it mean to be a good human being? Are we less human when our academic intelligence is limited?
Another Motherlode reader equates learning ability in people with Down syndrome to her suffering with untreated bipolar disorder. But does having a low IQ, in and of itself, cause physical and mental suffering?
I can only look to my son, Ben (in photo above with sister Lucy), who has mild mental retardation, in trying to answer this question.
It seems to me that the bulk of suffering for children and adults with low intelligence comes from being judged and excluded by others.
In Ben's case, I think he experiences anxiety and frustration, and that is a form of suffering. But for the most part I do not see his intellectual disability causing suffering.
Is he suffering when he’s laughing hysterically while playing computer games designed for younger children? Is he suffering when I pull him around on a swim noodle in the heated pool at Bloorview – or when he balances on the swim noodle himself and pretends he’s a cowboy? Is he suffering when he looks down from a height of 20 feet to see a group of children cheering his descent on the zip line at camp?
My son does have physical pain, and that is a terrible form of suffering. But I don’t believe that his intellectual disability causes him to suffer.
Years ago I was asked to fill out a survey by genetics counselling students about aborting fetuses based on disability and quality of life. It bothered me tremendously that there were questions like: “Would you terminate if you learned your child had mental retardation that would affect his quality of life?”
People with mental retardation are marginalized and discriminated against in our culture. That’s a social problem.
Does intellectual disability limit one’s ability to have a rich, joyful life? I don’t believe it does. I do believe it makes life harder – much harder – but I don’t equate a good life with an easy life.
I did like this comment on the Motherlode blog, from the mother of a child with Down syndrome: “It is hard to believe that she won’t be able to solve problems or read literature. And yet it is easy to believe that she will rush to a friend, or even a stranger, in need. Easy to believe she will bring joy and light and life. Can you live a full life without ever solving a quadratic equation? Without reading Dostoyevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.”
What bothered me most about the Motherlode comments was the hatred and fear that intellectual disability seems to elicit in so many otherwise educated people.
What did you think?
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14 comments:
If there is one thing I've witnessed since Gabe was born is that the more educated people are, these same people are detached from the "human factor". I saw this in doctors, especially, during Gabe's first year.
Have you seen the movie, "Good Will Hunting"? When the psychologist points out to Will that he has not seen any of the things he's read about in all his books in an effort to get Will to follow his dreams, it dawned on me that so many people in this world lead this type of lifestyle.
Anyone, myself included, can rant about what we have read or studied, and apply that knowledge in opinions. But until we live -- actually become immersed in what we so eagerly opine about -- we will never quite know what we're talking about, will we? So, for the commentors that feel they know more than we, parents of children with Ds, do, I have to ignore them.
Although I like the idea of Gabriel having the ability to keep his cognitive development steady and his memory good, (I worry incessantly over what will happen to him later on in life), I don't need society telling me that he needs curing. So, like you, I see the research as a positive thing and the media thing to be a pain in the ass.
Your son is adorable! Both your children are adorable!
What bothers you, bothers me, and frankly, I don't have the energy to constantly be in dialogue with this. I look on the subject as, perhaps, my life's work, and it's so draining sometimes.
Forgive me if I don't say anything other than this is a great, provocative and informative piece (as always!).
What a great post (I would like to put a link to it on my blog if you don't mind?).
I'm glad the doctor pointed out "far from being a cure" - unfortunately the media has far too much influence. It's nature has become to exaggerate and and use lines which provoke emotion ("suffers from" " "overcoming the odds" "hope for sufferers of" etc).
Hi Louise, In answer to your question about Soper's book; I signed it out of our local library. It's a hardcover and I believe the soft cover is out or out shortly. It's a really well written book!
I LOVE your blog, Louise and I hope that you have many many more readers in 2010!
What a great post!! Personally, I always thought that being born a human being,made you a human being. Period. Then you deserve all the rights to protection, life, etc. that all human beings deserve.
You are so right about cognitive disabilities not necessarily leading to "suffering"...and that society makes problems in this regard.
However...there has to be a bit of a distinction here. Some people's cognitive challenges pose a danger to them, regardless of society and it's (sometimes idiotic) views. For instance, my friend's daughter who has Down's Syndrome and is hard of hearing is an eloper. She runs every chance she gets...she has no sense of fear or of self-protection because of her cognitive disabilities...she could get hit by a car, or die in the woods on a cold winter day...This is why I support cure. It's just not possible for a child/adult to be watched perfectly all the time...some eat all kinds of stuff (pica), some bang their heads, some are violent because of their cognitive disabilities. They need help of a "fix it" sort, as well as of a societal sort.
Having said all that, because of your post, Louise, I have had this "aha" moment...where I suddenly get why some parents get so offended at these types of "news" stories...it does make it sound like their kids are worthless, or not deserving to be alive and other things. I never understood that before and now I do. Thank you very much..I am more sensitive to this as a result.
Lianna -- I did see Good Will Hunting -- but the old memory is not working very well! Perhaps I'll rent it again. But I do get what you're saying about how different "book learning" or philosophizing about a topic from a distance is from actually living it. And I went back on Amazon last night and lo and behold the Soper book was there. Go figure. I'll have to check it out.
Thank you Elizabeth!
Emma, of course you can link to this -- hope to hear more from you.
And Claire -- yes, it is not the attempt to improve a child's life through drug or other therapy that I find offensive. It's relegating people with cognitive disabilities to second-class "personhood," with the implication that their entire "being" needs to be transformed through a "cure" to raise them to human status. I'm always glad to see you here and I LOVED the photos of your new home, which looks perfect!
Hi Louise: Thanks for visiting my blog at Choices That Matter. And I've loved reading various blog posts, including this one, responding to the Motherlode piece. I feel like the comments on Motherlode are a pretty comprehensive representation of all the "big" questions that we as a culture need to be asking about suffering, disability, and medicine in light of new reproductive and genetic technologies.
I would like to talk to you about your prenatal diagnosis experiences. I am gathering names and contact info to start a formal interview process in February. You (and anyone else who reads your blog) can read more about the interview process at my blog, Choices That Matter. (If you click on my name attached to this comment, you will be taken to the site, and on the top right corner of the page you'll see "Tell Me Your Story.") Or you can e-mail me directly at 5dollars [at] comcast [dot] net.
Looking forward to talking with you and reading more on your blog (now added to my Google reader!).
This is such an excellent article, Louise!
Well Louise ...once again you have spoken words that I did not know were in me but I am nodding away like those plastic dogs in the back of a car in the 1970's.
Without hot there is not cold, without winter no summer, and without able bodied children no disabled bodied children. Differences make people afraid. And like Elizabeth above "What bothers you, bothers me, and frankly, I don't have the energy to constantly be in dialogue with this. I look on the subject as, perhaps, my life's work, and it's so draining sometimes" I dispise spending my time trying to right the 'wrong and disabled' attitudes of so many who see those with disabilities as the 'wrong' ones in this world. The peace inside of me tells me that my child is not 'wrong' ...he is just the right medicine for so many people who need to slow down and feel grateful and happy about something other than $$$, things, smarts and career success.
ahhh...its off my chest
Well done again.
Katharine
Well Louise ...its Max's mom.
Once again you have spoken words that I did not know were in me but I am nodding away like those plastic dogs in the back of a car in the 1970's.
Without hot there is not cold, without winter no summer, and without able bodied children no disabled bodied children. Differences make people afraid. And like Elizabeth above "What bothers you, bothers me, and frankly, I don't have the energy to constantly be in dialogue with this. I look on the subject as, perhaps, my life's work, and it's so draining sometimes" I dispise spending my time trying to right the 'wrong and disabled' attitudes of so many who see those with disabilities as the 'wrong' ones in this world. The peace inside of me tells me that my child is not 'wrong' ...he is just the right medicine for so many people who need to slow down and feel grateful and happy about something other than $$$, things, smarts and career success.
ahhh...its off my chest
Well done again.
Katharine
I can't stop thinking about the questions you raised. I also can't help thinking that the folks who view mental disability as a measure of humanity are wandering into a materialistic view of the world - a very cold and heartless view.
My little guy has damage on over half of his brain, but I've never met a soul who so utterly relishes every moment of life - he's teaching me how to be a human all the time.
Folks are always musing on the percent of use we get out of our brains. My little guy has made me believe it's far more important to measure the percent of use we get out of our hearts.
Kudos on a great, thoughtful and heartfelt piece Louise. You're an inspiration.
Katharine -- I loved the image of you nodding away like those bobble animals! And I so agree with your comment: "The peace inside of me tells me that my child is not wrong' ...he is just the right medicine for so many people who need to slow down and feel grateful and happy about something other than $$$, things, smarts and career success." Bravo!
Dave -- I think you hit the nail on the head when you said your son is teaching you how to be human. And yes, while our culture frets about whether we're making full use of our brains, it's not so often that anyone stops to measure (or value) the capacity of our hearts. Cheers!
Not sure if anyone will read this, as this post is almost two weeks old, but I had to comment. I taught special ed for five years and intellecutal disability was part of what I dealt with. I NEVER felt that intellectual disability hurt children other than the ways that it's described here--because these children were ostracized and made fun of. Really, maybe we need to turn the tables and ask why we find it's acceptable to treat them like that?
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