Schooled

Yesterday, a couple of people I work with delivered a short presentation on "ableism" during Access Living's staff meeting. Ableism is systems, structures and attitudes that contribute to the marginalization, segregation or oppression of people with disabilities. One example of ableism could be hosting a public forum in a space that is not accessible to people who use wheelchairs. The two people who presented had delivered the same workshop a few months earlier at the United States Social Forum. During the discussion after the presentation, one person on the Access Living staff raised a point about attitudes. He said that attitudes are not the problem. Attitudes, he explained are created by systems. Therefore, attitudes are a manifestation of a system. If you want to change what a person thinks, don't try to change his or her attitude, change the system that influenced the attitude.

His statements triggered thoughts of my efforts with Little People of America. From an advocacy standpoint, a major goal of Little People of America is to change people's attitudes about people of short stature. On websites, youtube, and the streets, attitudes that view little people as nothing but a punchline or comic relief still exist. The statement of my co-worker at the staff meeting made me question the work of LPA, "is it the wrong approach to try and change the attitudes of people who think a little person walking down the street constitutes entertainment?"

I think the answer is no. The person who made the statement at the staff meeting has written a book, teaches high level courses at the University of Illinois at Chicago, and sounds a lot smarter than I do when he speaks. As a result, he made me question what I and others have been doing since 2006 with Little People of America.

But I think what the professor said, and what LPA does, are quite similar. Although I think of LPA as trying to change attitudes, we can't do that without changing systems. If we approached the webmaster of a site that demeaned people of short stature, he or she would probably either ignore us or laugh at us. We couldn't change that attitude because the webmaster lives in a world in which little people are nothing but dehumanized objects. In order to change the behavior of the webmaster, we'd have to change the world in which he or she lived, opening up his or her perception of little people to one of people with full personalities, characters and lives. That's not to say individuals within LPA never respond to offensive comments or actions of people or establishments. But in doing so, we are not only trying to change what the entity thinks or does (attitudes), we are trying to open up the world in which it exists (systems).

In terms of language, I think the professor made a good point. For example, use of the word midget. Is LPA better off attacking any entity that uses the word out of ignorance and malice? or influencing the creation of systems that don't use the word (getting the word phased out of style guides, identified as negative in dictionaries, etc..). But in both cases, in order to change an attitude, the world around the attitude must be changed first.

In the end, I don't think it matters if we refer to the work of Little People of America or other groups as changing attitudes or changing systems. What really matters is if we are doing our best to create an inclusive world that embraces diversity.

different interpretations

Here is a link to a story that appeared this week on a Chicago blog called Gapers Block. The story covers the 2010 Disability Pride Parade. I was a part of the parade and remember the reporter hanging out at the Open Mic the night before the parade and at Daley Plaza the day of the parade. She included many quotes from a wide selection of people who are part of the disability community. This made for a pretty good story because it offered many perspectives, with disability pride and unity being a common thread. I spoke with the reporter over the phone a day or so before the open mic event. In my conversation, I told her a story that I once shared on this blog, about someone, without permission, taking my picture while I rode my bike. I said one of my biggest fears is an authorized video or picture of me showing up on the internet. Countering that fear, the great thing about the Disability Pride Parade, similar to a Little People of America Conference, is that you can do what you want, and be who you want, in an environment of equality, without fear of judgement, and without fear of vindictiveness based upon prejudice.

Though concerns about unauthorized photographs still run through my mind, I don't them stop me from doing what I like to do. I still bike several times a week up and down the lakefront and through the busy streets.

With that in mind, the last part of the article about the disability pride parade was a little tough to read the first time. At the open mic, my wife Katie read a story about an evening we spent listening to music in Millenium Park. At one point, Katie got up to dance. I stayed on the blanket that we had spread out on the lawn. My refusal to join her had nothing to do with any fear of youtube and it had little or nothing to do with dwarfism. It had everything to do with not wanting to dance in front of thousands of other people who sat on the park grass. My guess is that hundreds of other people in the park that night (who were not people of short stature) weren't dancing for the very same reason I chose not to dance.

The reporter heard Katie's story at the open mic. In the article about the parade, she made a connection between my refusal to dance and my fear of an unauthorized appearance on youtube. I was a little angry at first. Not so much because what she wrote is incorrect. More so because the story made it appear that my life is governed not by what I want to do, but by fear of what others will think and do. It's only human to be influenced by the opinions and social pressure of those around us. Both those to whom we are close and strangers. But I, and many other people with disabilities, have worked hard to battle social stigma in order to impact an inclusive world, and we've worked hard to avoid being forced into an inaccessible world. That's why, in an article celebrating the disability pride parade, it was disappointing to be portrayed as someone whose decisions are influenced by a fear of unacceptance.

Nevertheless, it's still a very good article. And no matter what any writes or does, I hope I will keep riding my bike. And I probably will occassionally dance, but only in my apartment when no one else is around.

I've got you covered

This week, I received an email from the Illinois Campaign for Better Health Care. The email went out to the organization's entire subscription list, thanking the community for its work to help pass the Patient Protection and Affordable Care Act, or federal health care reform. A significant piece of the legislation that Little People of America supported was the guarantee that people with pre-existing conditions (like dwarfism) would not be denied coverage. Under the new legislation, starting in January of 2014, it will be illegal for insurance companies to deny coverage based upon pre-existing conditions. This is important for the dwarfism community because many people have been denied health care because of their disability. As a member of the board of directors of LPA, receiving an email or a phone call from a member or a parent of a little person who was denied coverage was very frustrating because there were no good answers. Sometimes the only help LPA could offer was a letter of support to the insurance company, urging it to offer coverage to the person it had recently denied.

Hopefully, with the passage of health care reform, there will be better answers. Though the pre-existing section of health care reform doesn't take affect until 2014, starting September 1 of this year, at least in Illinois (and I hope other states) there is what is called the federally-funded temporary high risk pool. According to the website (people from Illinois can apply for coverage on this website), "the federally-funded high risk pool will provide transitional coverage to 2014 for the currently uninsured with preexisting conditions."

Though health care reform, especially the pre-existing conditions part, is promising for people with dwarfism, there is still concern that insurance companies will find some sort of loophole to deny coverage or will charge unaffordable premiums. I have no information that proves this won't happen, but at least, for now, people with dwarfism and other types of pre-existing conditions have a legal and a legitimate tool with which to work.