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Wednesday, January 30, 2013

Sports as a Civil Right

In the last few days I have read many stories that assert playing sports for a person with a disability is a civil right. These stories were prompted by the U.S. Department of  Education Office for Civil Rights that issued a thirteen page report requiring schools to make "reasonable modifications" in an effort to include students with disabilities in athletic programs. As I understand it, the government is requiring schools to include students with disabilities in mainstream athletic programs or provide parallel options. Many believe this is an important development in disability rights. To a degree this is true. Writing in Forbes, Arthur Miller, Art Caplan and Lee Igel stated:

Asserting access to athletic programs as a civil right is a big step forward for our education system and, of course, for people with disabilities. It highlights the important role that sports can play in the development of young people as functioning and contributing members of society. It also serves to help decrease the stigma too often associated with physical, mental, and emotional disabilities 

There is no question the inclusion of students with disabilities in athletic programs is a great idea. I accept this as a given. The real issue is who gets to decide what is a "reasonable modification"? In addition what sport or sports will be modified? What adaptive sport equipment will be purchased? I sincerely doubt the "reasonable modifications" required will be reasonable to me and others with a disability. Many compared the requirement of equal access to athletic activities for people with disabilities to Title IX. Title IX undoubtedly revolutionized sport options for women. However, Title IX did not make female athletic programs cash cows like many male sports such as football and basketball. If female athletic programs play second fiddle to comparable male programs I would suggest   sports for people with a disability will place a very distant third.

At a practical level, I cannot foresee schools being willing to spend money on adaptive sports equipment. For instance, many schools in Vermont have ski teams. Will a school be required to purchase a mono ski for students with disabilities that express a strong desire to join the ski team? A mono ski rig costs many thousands of dollars. Will a school be willing to rent a mono ski for the season? Will school districts pay to have its athletic teachers be trained in adaptive sports? The resounding answer to these questions is no. When my son attended public school I was stunned at the degree of hostility I encountered. Any request I made in terms of wheelchair access was met with a firm and not so polite no. Reasonable accommodations at the university level are equally problematic.

I believe the root of the problem is financial and the lack of any presence on the part of people with a disability. Making "reasonable modifications" for people with a disability is expensive. School districts simply do not want to "waste" limited resource, money, on students with a disability. Compounding this problem is the fact people with a disability are not involved when decisions are being made. The utter lack of representation is a significant problem. I have attended many meetings where I am the lone voice advocating on behalf of access for people with a disability. I cannot tell you how many times my words have been met with silence. Kind words are spoken and many will nod their heads in approval that in an ideal world such an expense should be made.  An awkward silence will ensue. A vote will be taken and access is always the first line item cut. The result is I am perceived as a narcissist. I have been told it is "always about you". The fact is it is never about me but the person with a disability behind me--the next man or woman who will not have to fight for inclusion. It is a lonely isolating and losing battle I have fought.

The bottom line for me is simple: the inclusion of children in school sport is a wonderful idea. I have seen how sports can revolutionize the perception of people with a disability. When I ski many people think adaptive skiing is cool. However I do not think there is the social mandate for inclusion of children in school athletic programs. Without a social mandate schools will do what they have always done--ignore the law. I hope I am wrong.

Sunday, January 27, 2013

Down Syndrome: The Garcia Story

I am sure most people interested in disability rights have heard and read about Michael Garcia. Garcia is a waiter in Houston who has been hailed a hero or champion of disability rights. Garcia was serving a family of regular customers who had a child with Down Syndrome. According to Garcia a group of people at a nearby table were disturbed by the presence of a child with Down Syndrome. They requested to be moved to different table. Garcia overheard someone at this table state "Special needs children need to be special somewhere else". Offended, Garcia refused to serve these customers. All the major news outlets have published feel good stories about Garcia. There is no doubt Garcia and any other person that stands up against to such blatant disability based discrimination should be lauded.  Garcia risked his job and he has been widely praised on his Facebook page and the restaurant website.

The Garcia story is heart warming yet I cannot help but feel story after story missed the most important point: disability based prejudice is an every day experience.  Only one story I read about Garcia has attempted to explain why the incident in question is unusual: See George Estreich "A Child with Down Syndrome Keeps His Place at the Table" (  One does not even need to read the op-ed link. The title tells it all. The fight for inclusion of the most mundane sort for people who have a disability, eating out at a restaurant, is not easy and can often turn into a battle.  As Estreich points out, disability rights is a work in progress. There is no doubt disability based bigotry is less common. That is the sort of disability based discrimination I faced circa 1980 would be frowned upon. Large institutions such as Willowbrook State are closed. Progress has undoubtedly been made. However there is a long way to go. The greatest successes in terms of disability rights have been made in the law. The last forty years have witnessed law after law that seeks to empower people with a disability. The problem as I see and experience it is that the laws that protect my rights and the rights of people with a disability are ignored and lack value. Without a social mandate for disability rights all the laws in the world cannot protect my civil rights. Violations are the norm. As Estreich pointed out, there are no more Willowbrooks but are group homes an ideal environment for adults with cognitive and physical disabilities. The New York Times published a scathing series of articles about abuse in group homes. One has to wonder are group homes simply small institutions. The point here is not to question whether  group homes are the ideal but rather suggest disability rights is complex with a unique history that is not taught in our secondary schools or university system. The result is the average person does not equate disability rights as civil rights. As I have stated many times, disability rights and civil rights are one in the same.

I have thought about the Garcia story a lot in the last few days. I had a close friend visit me this week. He is a noted poet and scholar. He also happens to be blind and has a great guide dog. We decided to go out to dinner with two other people who are also blind and have guide dogs as well. The best night to eat out was Friday. My first thought was not where to eat but rather eating out on a Friday night is a bad idea. Three people, three guide dogs and my wheelchair take up a lot of space. Extended discussions ensued most of which revolved around determining where we would encounter the least resistance to our presence.  There is no doubt in mind the mental logistics we went through were unique. No bipedal person with sight would have been forced to make the same social calculations we made.  Estreich is correct in a very real and tangible way that we people with a disability have to fight for out place at the metaphorical table. I wish I could state our dinner went smoothly. Our meal was great, service good but our departure was an adventure. For my friend's take on this see the follwing link: