Thursday, November 19, 2009

When We don't Speak Up for Each Other

Mark has written an excellent post on how our failure to speak up as a community can lead to legislation being passed (and other events) that are not in our best interest. He notes how the I got mine attitude toward obtaining wheelchairs- and other things- is dooming us toward an uncertain future.

An overall lack of accountability by those of us with disabilities to advocate for our needs is eroding access to even basic services. Currently, there’s proposed legislation to further devastate mobility funding via a tax, but few with disabilities have spoken against it. Similarly, positive legislation like the Community Choice Act for increased in-home care funding is vital to those with disabilities, but few with disabilities have spoken to support it. Our lack of voice tells legislators that we’re passive at best, and willing targets at worst. Capitol Hill can do what it wishes, knowing that we don’t advocate for our own interests.

He urges people to get involved, speak up and write your congressman when legislation that affects our issues is pending.

Write to your elected officials regarding the struggles of obtaining vital resources like funding for mobility and in-home care, be an engaged member in on-line disability communities for change, and encourage others with disabilities to get involved with you. You need to stay informed of the pressing issues of today – the Community Choice Act toward in-home care, Medicare cuts in catheter coverage, and the proposed further cuts and taxing of wheelchairs, to name just three issues – and get involved as a voice of advocacy. That is, live up to your obligation to be a contributing member to the disability community at large.


Every week there is legislation that is pending which affects the vital interests of the disability community. Think large, think outside your own individual situation, as Mark urges. There is autism legislation. There are bloggers who are blind and deaf who bring our attention to issues. And on and on. Check out JFActivist. Did you know there is a Disability Coalition on Health Care reform? There's so much information readily available online via blogs that just setting up your google reader or a daily email search on "disability" helps keep you informed- for free.

If you're nondisabled, I'm addressing you too. These changes affect all of us, our parents, brothers, sisters, friends. Our children.

I've faced my own individual struggles in getting equipment and care. My nephew faces a future of high costs in treatment with his disability as well. We know, because we are both in one family, that our individual struggles are related. But we are all part of a bigger family. Perhaps my love for him has taught me that, among other things I needed to learn. Our differences in disabilities doesn't matter. Here's what does.

Each of us is a statistic, unfortunately, to some of the people making these decisions. They don't look into our eyes when we are hungry because there is no one to cut up our food. They don't realize that legislation like the Community Choice Act would keep us out of nursing homes- because they may not know any of us who fall into that category or be able to imagine it ever happening to them. Needing a wheelchair? They don't know what that's like. No access to housing or transportation? It's far too easy for people who have never faced these issues to blame the individual. As long as this is seen as an individual struggle (or under the charity model as a misfortune), we will never make progress.

Then think about our moral obligation to those who can't speak for themselves. When I don't speak up or you don't speak up, you fail to speak for those who can't. Some of our brothers and sisters can't advocate for themselves. Use your voice if you have one. Use your hands if you can. Use your legs - use what you have to help those who need you - yes need you- to work toward a better future.

It's so much easier for me to get this when I look into my nephew's eyes, when I see how he works so hard at school and how every single accommodation he gets is so precious and necessary to his future. He will never be a statistic to me and I will never be a statistic to him.

Who better to speak for each other, my friends, than us?

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