Advocacy is Hard

I recently submitted a Letter to the Editor for a local newspaper and was excited to receive a phone call confirming I had written the submission so it could be published. Days after receiving the phone call, my submission was still not in print (or online). Unfortunately, it feels as though disability rights are not interesting enough to a public audience, certainly not during an election year, and definitely not when terror groups, LGBTQ issues, and guns are on the discussion board too. Oppression and marginalization of subgroups seem to ebb and flow like trends based on which group is suffering most at any given time. When it is convenient for people with or without disabilities to stand on a soap box and fight for the rights of people with disabilities, they will fight hard and say things I might not even have the courage to say. However, when an issue more trendy, more attractive, or more controversial comes along, support for disability rights goes ever so conveniently on the back burner. Worry not, for this little old disability rights problem will always be there for us to entertain ourselves!

Meanwhile, children with disabilities are growing up with the message they are not whole people. They are continuing to be surrounded by community cultures reenforcing the disabled body and mind as inadequate or incomplete. Children with disabilities are treated like second rate kids and they grow up to develop identities as inferior adults.

Thankfully, I had the opportunity to be raised by progressive parents, but even my progressive thinking parents could not save me from other kids at school, teachers, people in the community, colleagues, employers, doctors… you know… EVERYBODY ELSE! I had the opportunity to see myself as whole in the comfort of my own home, which is part of the reason I am able to extend my self-confidence into environments beyond the home, but it has not been easy and I do still struggle with it.

Soooo… Here’s the soapbox message that did not make it into the local paper after all:

I am finding it particularly difficult to manage doctors and other medical environments. I have heard example after example of other people with disabilities also struggling with medical providers. This seems to be a particularly difficult area to create a respectful and cooperative relationship. I want to be treated as the primary source of knowledge about me. I am the one who has been living with this body for 30+ years, so I think I probably know it pretty well by now. I do not want to have to see a doctor every three months just because I have disabilities and the doctor wants to check, and double check on me. I have a job and a life. I am a painfully average 30+ person, who happens to also have disabilities, but who also really just wants to not be a doctor’s pin cushion/voodoo doll. I have a whole lot of more interesting things I want to be doing with my time (and taking vacation time for unnecessary medical attention is not one of them). I find myself scheming ways to avoid needing a primary care doctor or any doctor. I am burned out from the stress of medical professionals treating me as if I do not know anything about what is good or best for me.

Blogs are excellent because they connect like minded people together for mutual causes. I was hoping I would have the opportunity to extend the advocacy I am doing here into print, but I guess I just need to wait until caring about disability rights becomes a trendy topic again.

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