Birthday, or not?

     Today is Aidan's fourteenth birthday.  At one level, this should be unremarkable: just another adolescent boy passing another year marker, working his way awkwardly to adulthood.  But, of course, Aidan is anything but typical.  On each of his birthdays, Maureen, my wife, and I hug or high-five.  We don't have to say anything.  The reference is clear: we, Aidan and us, have tacked on another year, defying for a bit longer, the pessimistic prediction of the doctors who said he would die young.  Fourteen is not old but it is longer than their gloomy assessments when he was an infant.  While there have been difficult times, there has been joy and happiness in Aidan's life, and in ours because of him.   Happy birthday.

     So, it is quite appropriate that Patricia E. Bauer should write an op-ed in the Washington Post today on the difficult subject of abortion and disability.  Her daughter, Margaret, has Down Syndrome and has recently graduated from high school and lives a happy and full life. How is it, Bauer asks, that the tacit social expectation is that people with disabilities are somehow less than fully human?  Why does society so readily condone the unquestioning abortion of fetuses with Down Syndrome?  The answer is not so easy when she reflects upon her daughter's life:

 Margaret is a person and a member of our family. She has my husband's eyes, my hair and my mother-in-law's sense of humor. We love and admire her because of who she is -- feisty and zesty and full of life -- not in spite of it. She enriches our lives. If we might not have chosen to welcome her into our family, given the choice, then that is a statement more about our ignorance than about her inherent worth.

    Ignorance is the key here.  Had Aidan not come into our lives, I would have a very different view of disability.  I would have been ignorant, or more ignorant.  I would have likely embraced the shallow sympathy of the mainstream belief that disability is, by definition, tragedy; instead of reflecting back on my own limitations and seeing a certain humanity in all persons, disabled or not. 

     The question, then, is: how do we expand society's vision and understanding of disability, how do we undermine the tragedy narrative and replace it with a common humanity narrative that encourages a wider social acceptance of and (this is crucial) support for disabled people?  It is not so much a problem of absolutely forbidding abortion of disabled fetuses, as it is creating a society in which disability is so warmly accepted and sustained that parents would see any child, disabled or not, as a loving, and loved, member of the family.

 

     Not all parents will have the capacity - due both to personal characteristics as well as socio-economic circumstance - to support a child with a disability.  But more parents do have such capacities than they might, at first, realize.  I suspect that decisions to abort disabled fetuses are often matters of image and expectation (do we want to be, and be known as, the "parents of the disabled kid"?), rather than genuine personal or socio-economic limitation.  But we cannot know that surely in every case; so, abortion might be acceptable in some instances. 

    Thus, instead of using the law to regulate behavior (here is a tie to Chinese philosophy: both Confucius and the Taoists frown on using the law as the principle means of social regulation.  For Confucius, enacting morality, and supporting the daily performance of morality, is  more important than legislating morality), we should think of ways to allow people, and especially prospective parents, to see the beauty of children with disabilities.  And the first way to do that is to put more resources and attention into supporting families with disabled children.

    If securing needed therapies and programs for disabled children in schools was less of a struggle and more of a welcoming and constructive process, then some of the stigma of disability might disappear.  If there were more healthy and happy group-living accommodations for adults with disabilities, adults whose parents have passed away, then new parents with disable children would worry less about what the future might hold.  If there were as much emphasis in our culture on common humanity as there was on individual productivity (I am, you will remember, against productivity), then there would be less questioning the value or worth of disabled people.

     None of this is easy.  There are powerful counter-forces - most conspicuously, the centrality of the "rugged individual" myth of American life and the social distortions of market-based rewards for individual "talent"- but it is possible to change the story of disability from unproductive tragedy to fulfilling happiness.  Bauer's piece helps.

Comments

[Bruce Jenkins]

Happy birthday to Aidan. Having watched him enjoy a lovely summer dinner I am sure he will enjoy his birthday even more. I wonder if it is the rugged individualist interpretation that undermines our ablity to deliver more humane services to the disabled. Unfortunately, especially at the level of school funding, shouting matches often develop over disposition of scarce resources. Sometimes it seems a very Darwinian scramble for larger pieces of the fiscal niche. Interestingly, scarce resources are often consumed by people, who, to put it bluntly, don't really need them. For example, in the six year tenure of my wife at her school where she taught the percentage of kids, who by their various and sundry "disabilities", needed to be on the "untimed test list" increased from about 5 to about 60% in her two classes. These people require special assistance and evaluation and thus consume precious resources better used by those more needy. The Marxian maxim of "From each according to ability to each according to need" is given lip service but not much else. So not only do we need more humane and dispassionate (i.e. emotionally disentangled) help given to those who need, but it is important that some degree of self policing take place. As usual, simple solutions don't immediately suggest themselves. The filthy lucre rules.

[Reka]

This entry was wonderful and yet heart-wrenching. I spend my days with people like Aidan, and want to spend my life enriching the life of disabled people. I just recently took a job at an agency that serves adults with disabilities, including the ones with severe disabilites. If you'd like me to tell you more about it, feel free me to drop me an email. Happy birthday to Aidan! I'm sure that with your dedication to improve his life there will be many more.

[Bewildered Academic]

Happy birthday, Aidan!

[Ken Thomas]

Happy birthday Aidan!

As to the question of expanding understanding, I recently had the chance to see Mark Zupan, a member of US quad rugby team, speak after a showing of the film "MurderBall." He is an amazing speaker, and his story incredibly effective in using anecdotes to drive home (again and again) that he and others, disabled or Black or Muslim etc, are simply people in bodies that are different.

And that those who see otherwise may be missing wonders. The message played well to an audience of 150 or so students at WKU; I was disappointed to see few faculty in the audience, much less community members.

Thank you for sharing your story and thoughts above. I am saddened to hear that students such as Aidan are not welcomed in the same way as others.

[Sam]

Thank you to all who came and read about Aidan. He had a good birthday. Although he did not escape from school (we will have a full-blown party this weekend) he was feted by his family over dinner: cake, presents, singing. His sister was especially loving. Even though I had bought several presents and told her that one could be from her, she insisted that she take her own money and go to the store herself and pick out something personally for him. We went to the bookstore and she found a book that she felt captured something about herself that she could give to him: a Robert Dahl book. Her love is just another aspect of his presence in the world.