Autism, Disability, and the Obligation to Get Well, Part Two

As a result, we find ourselves in the vortex of a great deal of distortion for wanting to simply be at peace with ourselves and carve out a meaningful life.  It’s as though, having given up our “patient” status, we’ve committed some sort of cardinal sin.  Thus, you get autistic self-advocates, who do not want to be cured, being told that we’re faux autistics.  If we reject the role of the “sick” person, with the one overriding obligation to get better, it’s as though we short-circuit the cultural wiring.  The response is often along the lines of, “If you refuse to see your autistic mind and body as sick, and you refuse to accept the social role that having such a mind and body entails, then you must not be autistic at all.”

That logic, of course, is not logic at all, which is an indication of how deeply threatening stepping out of our assigned role feels to other people.  And the illogic means that we face psychological warfare of the worst kind:  we find ourselves verbally stripped of the very condition that is the source of our struggles, our triumphs, our sensitivity, our discipline, and our awareness.  In those moments, it’s as though our entire life histories have been erased.

Were we not threatening a deeply held cultural value, the response to us might be somewhat more productive, along the lines of, “I give you a lot of credit for your strength and your accomplishments, and I celebrate that you have a happy and fulfilling life.  But please be aware that my adult autistic son, who tries to self-injure all day long, who bloodies himself on a daily basis, who gives himself concussions when he’s stressed, is in a state of irremediable pain that no accommodation can fix.  Do you understand why I want to move heaven and earth to find a cure?  And, until that help arrives, can you give me some insight as to how I might understand what is happening to him?”

That would be a conversation worth having.  Unfortunately, I’ve never seen it actually happen.

In the absence of that conversation, I understand the wholesale rejection of words like “disease,” “disorder,” and “sickness” in the autistic community.  I’ve gone to great lengths to distance myself from words like those, and I’ve always felt a great deal of discomfort about it, too.  After all, what is so shameful about having a disease, or a disorder, or a sickness?  Isn’t rejecting those words just playing into the hands of those who see disability as the worst possible thing that could happen?  Don’t we need to reclaim those words and empty them of all of their dehumanizing connotations?

I think we do.  But it’s difficult to do so when being labelled diseased or disordered puts you into the trap of having only one social role, and it’s a role you can’t fulfill.  Under those circumstances, it’s entirely understandable that the response would be to reject the label altogether.

As I sit here thinking about all of these issues, I’m reminded of someone I never met, but about whom I know a great deal:  my husband’s late wife, Karolka, who died of ALS ten years ago, at the age of 55.  One of the most memorable things that Bob has ever told me about her has to do with the whole issue of disease and cure.

Even before the diagnosis of ALS was confirmed, Bob and Karolka sought out all kinds medical interventions to try and heal her — or to at least slow down the progression of the condition.  And on a regular basis, they would hear from a friend or community member with another great idea for them to try.  At a certain point, Karolka decided that it was time to stop chasing a cure, and to start accepting and living her life.  Even after she’d made that decision, people would periodically show up with new ideas, but she had moved on, and when she did, she found a great deal of joy.

She never referred to ALS as “my disease.”  She always referred to it as “my condition.”  And lest you think that she was engaging in feel-good, New Age, mamby-pamby, politically correct nonsense, please allow me to disabuse you of that notion.  She had absolutely no time for bullshit of any kind, and the last thing on her mind was a desire to fulfill someone else’s idea of how to talk about her life.  But in speaking about ALS as a condition, rather than as a disease, she gave herself a great gift:  She made herself an active participant in her process of living and dying, rather than a passive victim of an enemy beyond her control.  And she released herself from the obligation of having to “get well,” when getting well was out of the question.

I’m not saying that every disabled person has to see himself or herself the same way.  And I’m certainly not saying that it’s not okay to want a cure for one’s condition — although there are a great many troubling consequences to having a cure in a culture in which our main social obligation would be to avail ourselves of it.

What I’m arguing against is the whole idea of the obligation altogether.  Far too many people will never have typical neurologies, typical bodies, typical minds, or typical ways of being.  Giving disabled people an obligation we can’t fulfill means that we become people of less than equal worth.  And it also means that we have very little support to fulfill a number of other roles — such as mother, father, husband, wife, son, daughter, friend, neighbor, and community member — that we want and need, just as everyone else does.  The overriding quest for a cure means that an organization like Autism Speaks spends most of its budget on research, and only 4% on services for autistic people living in the here and now.  What is this “autism advocacy” organization advocating for, anyway?  It is advocating for us to assume one role, and one role only — that of a patient, passively waiting to get better.  It is not advocating for us to fulfill our birthright — to participate fully in all that the world offers to typically able-bodied people.

A few years back, after I received my Asperger’s diagnosis, I told a friend of mine who lives in Jerusalem, and who himself lives with a chronic disability.  His response was something along the lines of “My sister, I will pray to Our Creator to heal you.”  I was rather aghast at his response, as loving and as well-intentioned as it was, but I couldn’t quite articulate why.  I wrote something back to the effect of “Please don’t pray for my healing, but for my ability to manage my life with strength and dignity.”

I never head from him on the subject again.  But if I had it to do over, I’d expand on my request for his prayers and say, “Please, don’t pray for my healing.  Please pray for my strength.  Please pray for my dignity.  Please pray that I have supportive friends and a loving community.  Please pray that I continue to find meaningful work.  Please pray that the world stops seeing me as broken.  Please pray that others don’t react to me with fear and prejudice.  Please pray that I live a long and happy life.”

Perhaps I’ll still ask for those prayers.

Return to Part One

Rachel Cohen-Rottenberg blogs at Journeys with Autism.

Autism, Disability, and the Obligation to Get Well appears here by permission.

Rachel Cohen-Rottenberg’s Memoir is The Uncharted Path.

[image via Flickr/Creative Commons]

on 05/13/11 in featured, Society | No Comments | Read More

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