Down syndrome and suffering

I do love having a blog.  In large part this is because I love the way that writing here becomes a kind of conversation.  A friend today was sharing with me how grad school made her feel that writing was a completely solitary activity--alone in the library, sitting silently with dusty books stacked around you, with the pressure to churn out brilliant ideas.  I felt this, too, and hated it.  Only in the last few years have I begun to recognize writing as a community activity, something much like the kinds of conversations I have in my classes.  And I've discovered that what I love about my job is the fact that I get to have analytical conversations all the time.

Okay, so on to the point:  a reader made a comment on one of my recent posts.  The comment was this:

How can you say Down Syndrome does not cause the kind of suffering that panic attacks do when you do not personally have Down Syndrome? I know you are the parent of a child with Down Syndrome but that does not give you the identical perspective of a person with Down Syndrome. Perhaps being smart enough to see and understand the way Down Syndrome may limit a person (for instance it may limit a person's ability to live completely independently/to have true adult autonomy as a person, to have children, etc....)as many people with Down Syndrome are, does cause it's own form of suffering. We are all aware of our own limitations in life; of course we all have them. But most "typically" developing people can fulfill our biological and social destiny to live as free and independent adults and start families if we choose. I know many people with Down Syndrome do live quite independently and have fulfilling lives, but there is also the reality that many people with cognitive disabilities are nevertheless plenty perceptive enough to observe what they are missing as a result of their cognitive challenges.

I guess I just think it's a little patronizing of you to talk about whether or not people with Down Syndrome suffer at all as a result of having DS when you are not a person who has it.
This comment has gotten me thinking.  First of all, the reader is right:  I don't have Down syndrome and therefore can't compare levels of suffering.  Really, you can't compare any kind of suffering between people--suffering, psychological and physical, is such an individualized experience.  Biffle can slice open parts of his body in ways that look profoundly painful to me, and yet they don't seem to bother him much at all.  "Oh, yeah, I cut my hand," he'll say, as if he'd sort of forgotten that he had a huge new scab.  It's impossible to know in any objective way what's more painful:  loneliness or hunger?  A slipped disk or a torn ACL?  A panic attack or a brain tumor?

So I can't compare, and I certainly can't make the claim that people with Down syndrome don't suffer.  There's no across the board claim that can be made, because we're all individuals.  What I guess I can say is that Down syndrome isn't a condition that has a component of physical suffering.  People with Down syndrome don't, as a result of Down syndrome, experience painful physical challenges like those that might accompany cystic fibrosis or chronic fatigue syndrome.

But the reader notes that people with Down syndrome might suffer from the degrees to which they may or may not be able to live independently.  They might suffer from a recognition that they're having to work harder, or differently, than some of the people in the world around them.  Indeed, adults with Down syndrome have made just such observations.

I guess what strikes me about this is that these kinds of suffering aren't qualitatively different than the suffering many people, with and without cognitive disabilities, encounter.  I almost want to say that this is simply part of the human experience.  Although we live in a culture that values independence--and many of us value independence--we're all going to have significant periods in our lives in which we're dependent and interdependent.  Many of us don't have a kind of free independence as our "biological and social destiny."  Along the same lines, we all have areas in which we have to work harder or differently than other people.  Is this qualitatively or significantly different for people with Down syndrome?  Is it worse?  I don't know.

I do know that some of these kinds of suffering are results of cultural biases and stereotypes, and those can be changed.  I worked with an adult with Down syndrome who reflected on her father's absence, the fact that having a daughter with Down syndrome freaked him out so much that he removed himself from her life.  This was a big deal for her, and incredibly painful, and to some extent this guy's absence--I suspect--was based in his own lack of knowledge about Down syndrome.  It wasn't caused by Down syndrome; instead, it was caused by his understanding of Down syndrome and his own choices.

And yet many, many people who don't have Down syndrome have absent fathers.  So this, too, is a kind of suffering that's not in any simplistic way caused by Down syndrome.

So while I can't say how my suffering from panic attacks compares to painful experiences Maybelle is going to have--and I agree that saying so is patronizing--I do want to resist a narrative that allows us easily to associate suffering with Down syndrome. I don't think this is what the reader was doing, but I know that in much of the literature surrounding prenatal testing, folks will discuss terminating a pregnancy with Down syndrome as a way of preventing the suffering that the potential person would have to experience.  And that, too, is a patronizing and poorly informed assessment of Down syndrome.


Tara said...

Well said!

Rairy said...

(please forgive the anger. the commentor upset me and I've had difficulty stepping away without responding. you've already said what I'm going to say)

The inability to live completely independently and or to not have true adult autonomy is not in itself a cause of suffering.

The belief of others that complete independence is required of all adults and those without it are lesser somehow is a hurtful arrogance I wish was not so commonly held.

I can not speak as someone with Down Syndrome but I can speak as an adult with illness that does prevent me from living completely independently. I need the support and care of others to survive.

I find more suffering in my life caused by those who look down on me because I will never fulfill my biological and social destiny to live as a free and independent adult and start a family.

F*ck them. There is joy to be found in my life. I exist for my purposes and those are good enough. I love and am loved. Yes I do suffer and struggle when I am prevented from doing the things I want to do by the limitations of my body. I work hard to be well so I can live the life that I want to live as much as I can.

Maybelle will face different challenges than I but regardless of what limits her body has I would hope she has the opportunity to do in her life what is important to her and the freedom to personally define what she considers important.

Biffle said...

To our readers and commenters: Baxter Sez has a longstanding policy of not publishing anonymous comments.

This policy has proved itself--time and again--to be a worthwhile policy.

We thank those of you who have joined our conversation and not hidden behind the convenient anonymity of the internet.

Thank you.

Alison said...

Hey, anonymous commenter--I read your comments and still have a copy of them, and I thought they were interesting and thoughtful. Send me an email and I'll send them to you to post again!

Also, people are allowed to post using monikers--you don't have to post with your real name, just with a name.