Recently I received an email from a reader with a disability who said she discussed one of my posts about advocacy with a friend of hers at lunch. Her friend told her that it wasn’t necessary to self advocate because everyone around the person with a disability “meant well”. When the reader pointed out a recent situation where she had to negotiate, her friend laughed at her and said that she was being silly.
The reader told me she was upset by her friend’s comments. She wrote “I feel like my friend slapped me down for trying to empower myself. This validated my gut feeling that I do need to advocate for myself. Although I don’t question that many people mean well, that isn’t the same thing as knowing what I need and it’s patronizing.”
Some people assume, like this reader’s friend, that it isn’t necessary to advocate for yourself if you have a disability. Because of this erroneous assumption, they see attempts to discuss advocacy as unnecessary. They don’t see advocacy as a tool used by both people with disabilities and allies to work toward a better quality of life, whether it be services, access or other issues related to disability.
Perhaps they buy into a “Tiny Tim” view of disability, where the person with a disability is seen as a passive recipient of the charity of others. The problem with this worldview is that it’s not much of a life to sit around waiting for a turkey to be dropped off once a year at the holidays. Nor is it much of a life to let others assume they know what’s best for you.
Over the years advocacy for people with disabilities has resulted in many positive changes, including the consumer oriented personal assistance programs that I and many other people benefit from. Instead of a medical model which limits how you can use the aide hours you’re given, a consumer model encourages recipients to use the services to volunteer and work if possible and is more flexible.
These kinds of programs wouldn’t exist if disability advocates and activists did not envision and work toward them. Advocacy is a necessary tool to set forth the needs and concerns of our community. And, like any tool, knowing when to use it – and how and to what degree- is important.
As one of my friends says “You don’t use a hammer to open an envelope or a letter opener to bang a nail in.”
Copyright 2007 Ruth Harrigan