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Saturday, March 26, 2011

Parenting and Disability: The Final Frontier?

Last year I delivered a paper at Union College at a conference entitled Disability and Ethics through the Life Cycle: Cases Controversies & Finding Common Ground. My paper was about being a parent with a disability. I dragged my son to this conference. I did this for two reasons. First, he was about to graduate from high-school and would be heading off to college in the Fall. I wanted him to see how scholars interacted at a conference. Second, I wanted him to see me in action about a subject, disability rights, that I am passionate about. We had a good time though he was understandably bored at times. Fast forward to last week. I completed a revised and expanded version of my paper for publication. I spoke to my son about my paper, our experience, and how slowly things grind along in academic publishing. He expressed a modicum of interest as he considered the issue already resolved. The paper was delivered, revised copy submitted, and it was time to move on. The sub text was, come on, Dad, this is boring when he suddenly said “Dad, there is only one thing that bothers me about you being disabled”. Oh no, I thought! Where have I gone wrong and how badly have I screwed him up. I said go ahead and tell me. He replied, “Dad, every chair and couch in our house is uncomfortable and you don’t give a shit.” I replied “Guilty as charged!”

I was tremendously relieved by my son’s comment. In the back of my mind I have always had one worry: would my disability have a negative impact on my son? I think his sole complaint, a valid one I may add, is an indication I did many things right. In short I am proud of myself and my parenting skills. Aside from my pride in the way my son has grown and matured, I look back and know it was not easy. I know only one other paralyzed parent. She is much younger than I am with a kinder garden aged daughter. Based on our conversations, she is not encountering many of the problems I had when my son was a little boy. This is heartening to me. But some things have not changed. First, ever present amazement that a paralyzed person can be a parent. Second, explicit and grossly inappropriate questioning by health care providers that assumes a parent with a disability is not competent. Third, social exclusion of children that extends disability based prejudice. Fourth, exclusionary practices in secondary schools and private organizations that inhibit the ability of a parent with a disability to be actively involved in their child’s life.

The four variables above have been foremost on my mind because of a recent court case. Here I refer to Abbie Dorn who gave birth to triplets in 2006. Complications during the births led to severe blood loss and Dorn’s brain being deprived of oxygen. The result was severe brain damage. There is no agreement on the degree to which Abbie Dorn is aware or able to communicate. A year after the triplets births Dorn’s husband divorced her and moved with the children from South Carolina to Los Angeles, California. The case to me is about two things: first, a bitter fight between the father and Abbie Dorn’s parents. Second, the rights of all parents with what is perceived to be a profound disability. The mainstream media has jumped all over this story. Stories have appeared on ABC national news, AP, New York Times, LA Times and many other news outlets. All focus on the classic tragic nature of the case. Abbie Dorn’s parents maintain their daughter has the right to see her children on a regular basis. The father, in contrast, thinks his children will be emotionally traumatized by seeing their severely disabled mother. The case went to court where after a two week hearing the judge ruled the mother had temporary visitation rights. She will be allowed to see her children three hours a day for five straight days each year in her parents home with the father’s supervision. The mother is also allowed a 30-minute monthly videoconference with her children.

The attorneys for both mother and father are thrilled. Abbie Dorn’s lawyer said the ruling was astounding and a precedent setting victory for all disabled parents. The father’s lawyer was thrilled because the visits will be minimal and supervised. I see no victors in this case. I see nothing that can be construed as a victory for all parents with a disability. Of one thing I am sure: there is a deep division bordering on hatred between the father and Abbie Dorn’s mother Susan Cohen. If there are any victims in the case it is the children who are caught in the cross fire between adults that cannot put aside their differences and put the children’s best interests ahead of their own. There is however a subtext to the discussion of the Dorn case. This subtext is never articulated because there is no doubt Dorn cannot physically care for her children. This is not in dispute. The more general subtext is far more complex: are people with a disability capable parents? The social assumption is no, people with a disability are unfit parents. I know this is the case because I was repeatedly discriminated against as a parent with a disability. My fitness and ability as a parent was always questioned. People were not subtle: health care professionals I met in the emergency room where I took my son when he needed stitches questioned whether I was my son’s legal guardian and asked if I had documents to prove it. I doubt any father walking in the door of an emergency room would be asked the same question.

For years I would tease my friends that the bathroom represented the final frontier in terms of disability rights. Sure I could get in the door but precious few bathrooms were ever accessible. Over time I have had to stop using this line—too many bathrooms are now accessible. I suspect that final frontier may now be the right to be an ordinary parent. By ordinary, I mean “normal”. Normal here meaning physical access and social acceptance at schools and all other organizations associated with youth development. Normalcy is something I never experienced raising my son. Does this sound like sour grapes? In part yes. But my son learned some hard lessons about discrimination other kids read about in books. The discrimination I faced and by extension what he experienced as well made him a more understanding person. He understands discrimination in a visceral way. He directly relates to civil rights movements of all oppressed groups. I wish he did not have this first hand knowledge but I look for the positive elements. And his complaint about my furniture is a sure sign he was in no way negatively impacted. Kids I have learned are amazingly adaptable. No kid has ever discriminated against me. Such bias is learned behavior. They learn how to be afraid or discriminate from their parents. I see this lesson being taught all the time. For instance when I go to the grocery store parents inevitably grab their kids hand and state, “watch out for that man in the wheelchair”. The message sent to the child is clear: people with a disability are dangerous, they have a tainted social identity. Now this is something I would like to see discussed. Rather than the tragic elements associated with disability. For I see no tragedy in disability just a group of diverse humans.


Eric Fischer said...

My son has a vein in his neck that, when he sees people without a permit nor need, park in the handicapped spot, begins to pulsate.
I would take the issue of the Dorn case even further though: the woman nearly dies giving birth to their children and he has the gall to think that they will be traumatized by their mother? That's a trauma worth being proud of.

About "normal" as you use it I would say, society will always have "normal" as average and someone in a wheelchair is not average he is an exception, just saying.

Finally, while I am certain you are right about your own experiences, for example the woman telling her son to watch out because you were perceived as out of control, you must realize that there are instances when the exact same thing will be said but the meaning is just the opposite, for the child to watch out so as not to get in your way, at least that's been my experience.

All the Best,

George MCCasland said...

As a father's rights educator, I am glad to see this happen for Abbie Dorn. I pray though that the courts also address similar cases where the man is disable and being denied access. Their cases never get media attention. I live in a nursing home and have seen a number of cases where disable fathers are not allowed to see their children by mothers who fell it is unhealthy, with the agreement of the courts.

However,why is there no equal outrage over the 40% of annual cases where mothers deny perfectly healthy fathers access to their children?

Carl Thompson said...

Really enjoyed this. Cheers.

Anonymous said...

Wow, Bill. Another great column. You've covered everything so succinctly, all I can say is, I'd be glad to help you pick out some new furniture. I have a very comfortable desk chair that I got at our local office supply store. Why don't you take your son along & go buy a new chair or two? Let him pick it out, too, so he can't complain about it later.

Liz said...

I wrote a post recently about the people who yank their kids away from me and my wheelchair...