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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.

Tuesday, March 22, 2011

Sports Imagery: A Damaging Article

I follow two sports closely--hockey and baseball. I love hockey and have a nostalgic interest in baseball. For me, money has ruined baseball. The players make so much money I find it offensive. I also object to the cost of attending a baseball game. Last year I went to Citifield where the NY Mets play--it cost me $200 to walk through the gate. I did not have great seats, just good seats. Sure I had fun but come on. $200 to see a ball game.

Baseball has history and a connection to American culture that is unique. To understand baseball one must understand Americans. The sport reflects our culture. Given this I find all sorts of meaning in baseball writing. I thus read far more about baseball than I ever watch. Yesterday I was reading about a San Diego player I had never heard of, David Newhan. Few people have heard of him because he is a journeyman, one of the many faceless ball players that populate the game. So why am I writing about this man? There was an article in Yahoo Sports The Post Game--"Old Ball Player, New Soul". Apparently Newhan broke his neck in a surfing accident. He was not paralyzed but came very close to being a high level quad. This is a good hook for any article but especially about an unknown baseball player. What shocked me however was the introduction to the article. It was gripping in all the wrong ways. Judge for yourself. Here is the opening:

"It was a simple act. David Newhan held open a restaurant door for a person in a wheelchair. And yet he was overcome by emotion. Gratitude gave way to longing, longing gave way to resolve, resolve circled back to gratitude, and then he wanted nothing more than to find the nearest ballfield, crush a fastball and dash around the bases.
As the wheelchair rolled past, Newhan silently thanked God for his own miraculous luck."

Let me see: I can open my own door thank you very much. I am also a human being. I am not "the wheelchair" that rolled past. How dehumanizing. Here is the blunt message: using a wheelchair is horrible, a tragedy. You do not see a human using a wheelchair you only see the wheelchair, the symbol of all that can go wrong. What are we expected to feel? Why pity of course. Pity the poor bastard that is confined to a wheelchair. This sort of dehumanization makes me furious. How can I ever expect to be treated equally when such destructive sentiments are expressed. Here is what I thought could have been written instead. The player in question takes an interest in disability rights and advocates for people who were not so lucky to avoid a paralyzing injury. This man in his spare time and from his privileged position helps people with disabilities attend or participate in adaptive baseball. Now that article would be worth reading and send a good message. But we rarely if ever see such an article. Charity sells papers. Tugging at people's heart strings gets people to read. Who wants to write about civil rights of people with disabilities. No major newspaper I ever read does this. This void can be overcome but we need people with disabilities to be writers, editors, or employed in some way throughout each section of American society. Without this I do not see an end to the dehumanized status of people with a disability in American society. Not a happy sentiment for sure but accurate.

Monday, March 21, 2011

Wheelchair Industry: Quality Absent

I opted out of dealing with wheelchair companies 25 years ago. This was an easy decision to make. Manual wheelchairs as most readers are likely to know are costly--easily exceeding $3,000. What does one get for this money? Not much. I think the vast majority of wheelchairs manufactured today are poorly designed and contain inferior parts, especially things you do not see like wheel bearings. No mass produced wheelchair can withstand the rigors of every day use. Worse yet, the services wheelchair companies provide is laughable. Durable medical equipment vendors provide dismal service at best. Do not believe a word RESNA, Rehabilitative Engineering and Assistive Technology Society of America, states about so called seating specialists. There is a shocking lack of competent people who can help consumers pick out an appropriate wheelchair. To be fair, I would include specialists in rehabilitation such as occupational and physical therapists among those that do not possess adequate knowledge. Getting the right wheelchair is extremely difficult. Mistakes are costly and here I am not just referring to the financial implications. An inappropriate wheelchair can result in a myriad of health related problems. Specialists can be found--most likely at larger rehab centers but I have never found one myself. I will acknowledge some people are well versed in wheelchair technology and have the experience of working with an array of people that need a wheelchair. Sadly, most people who have a spinal cord injury do not have access to these professionals. Adding to the problem is the fact the sort of comprehensive long-term rehab I experienced in the late 1970s is a thing of the past. Sure wheelchair technology and medical care have undergone a revolution since I was in rehab but there are disturbing aspects to the wheelchair industry and modern day rehab. Frankly, most people leaving rehab centers today are grossly unprepared to care for their bodies and the social response to their newly disabled bodies.

These thoughts have been coursing through my brain after reading a wonderful article in Sports N Spokes: "Chair Shake-Up" by Rory A Cooper and Rosemarie Cooper. This is a highly unusual article for the magazine to publish. It is filled with insightful observations and contains a social critique. Do not misunderstand my comment as a cheap shot at Sports N Spokes—it remains the best magazine published about adaptive sports. What separated this article from others is the critique of the wheelchair industry. This critique takes place at a critical juncture in time: the demise of high-end wheelchairs. This is an alarming phenomenon even if it does not directly affect me.

In 2010 Invacare and Sunrise Medical, the biggest manufacturers in the business, each stopped producing most of their titanium wheelchairs. They now make a plethora of crappy, i.e. cheap, wheelchairs that can be bought at a discount on line at sites such as The dearth of high-end wheelchairs however is symbolic of a larger problem--people who use a wheelchair are simply not valued. By high-end wheelchair I am referring to a wheelchair that is lightweight and tough--one designed to last a decade or more under rigorous everyday use. The rigorous use I am thinking involves extremes of weather and terrain as well the ability to absorb the abuse dished out by airlines and the constant assembly and disassembly required to get in and out of the car. Such a wheelchair has high quality wheels, rims, hubs, and a top-notch paint job (powder coating). Most mass produced wheelchairs will crumble under such use.

How do I test a wheelchair? I take the frame and throw it out a third or fourth story window. If the frame survives it is good to go. I sincerely doubt any wheelchair made by the mega conglomerate Sunrise Medical can withstand my quality test. This is a huge problem. What I wonder does a young male or female 20 years old with a spinal cord injury do? We guys, and yes gals, who use wheelchairs our entire life depend upon our wheelchairs. When they stop we stop. By extension, this has me wondering how do newly paralyzed people learn to cope with a spinal cord injury? When I was injured I learned far more from my paralyzed peers than I ever did from the doctors, nurses, and therapists charged with my care and supposed rehabilitation. Hence when I went to college fresh out of rehab the best education I got in terms of how to cope with the real world came from my peers.

Paralyzed people today do not get much time in rehabilitation. When I was paralyzed rehab stints of 6-9 months were common. Today, if you are lucky you get three weeks. No one in the olden days was sent home until they had their own wheelchair. When that wheelchair arrived it was a glorious day! Today, people are routinely sent home with a loaner wheelchair, a total piece of junk. They struggle as a result. The vast majority end up back in the hospital. Is this progress? Well no. This is done at the behest of insurance companies and affects not just people with spinal cord injury but a host of people foremost among them the elderly. I can only conclude our existence is not deemed important. You get a few weeks of rehab and if you do not progress it is off to the nursing home. Indeed, the average age for people admitted to nursing homes is now dropping. And who ends up there? People with spinal cord injuries. Do they get proper rehab? Not a chance. They are warehoused and unlikely to ever emerge from the institution they are sent to.

I mourn for my newly crippled peers. They are not given a fighting chance to succeed. In fact, they are set up to fail. How can a newly paralyzed person succeed with a crappy loaner wheelchair and three weeks of rehab? How can they learn how to manage their bodies without talking to those that learned to adapt long ago? The answer is they cannot. I learned how to manage my bladder and bowels by talking to other paralyzed guys. I did not learn one practical thing in the hospital. What I found in the hospital and subsequently in college was camaraderie. I learned much from peers and we were part of the pre ADA generation that had no civil rights and in its absence railed against prejudice. Not all of us succeeded but we all had a fair chance. That is all I want for paralyzed people today—a chance, a legitimate chance.

The only way paralyzed people can function is with top-notch wheelchairs. I was very lucky in that I was paralyzed at a time when wheelchair innovation was actually taking place. The monopoly that Everest & Jennings enjoyed for decades was broken in the late 1970s. For the first time in history paralyzed people were given a real choice when it came to wheelchairs. From this void emerged rigid frame wheelchairs that dominate the market to this day. What I am waiting and hoping for is another such revolution in choices. I do not see that happening though. Instead the wheelchair market is taking a giant step backward—pun intended. Wheelchairs are not designed for rigorous use but to the dictates of insurance carriers. Those insurance carriers do not care one iota about the quality of life of people that use wheelchairs. I care and am very sad. I figured a way around the practical problems of inferior designs and lousy service. My solution though is a solution for one—me. This bothers me for I worry. How do my paralyzed peers can function when restricted by insurance carriers and a lack of top quality choice? This is an issue that must be addressed at the highest levels of industry and government. We paralyzed people need access to not only quality wheelchairs but also technological innovations. Without it we are doomed to fail. I for one do not accept this reality.