Tuesday, May 01, 2007

Straddling the Line

Today is Blogging against Disablism Day. I figured I'd come out of my blogging hiatus (due to a really stressful move halfway across the country) for a quick post on this topic.

I often feel like I'm in between two worlds, not fitting either of them well.

Some days, I look pretty normal. I walk, drive, talk and function pretty well. I may still be hurting. My immune system may still be raging a war against the rest of my body. Though I look fine, I may just want to go back to bed and rest from the fatigue of being awake. If you look closely, I may walk rather stiffly and slowly. I may not use my hands very well. My fingers may be contorted into odd positions. On those days, I am one of "the normal".

When I pull into the disabled parking space, I may get cursed out or confronted because I look normal by both the able bodied and the disabled.

My requests for assistance may be frowned upon. I may have to prove that I need help. When medical explanations are requested, I give my diagnosis: psoriatic arthritis (PA). But arthritis sounds pretty innocuous (as in, "Oh, yeah, I have a touch of arthritis in my . I take loads of and it's alright"). So, arthritis as a disability seems off to many people since it's just a problem with your joints.

I am accused of faking. Of desiring people's sympathy. Of being a hypochondriac.

Until this past year or so, I had slipped completely by in the "normal" world. I had never faced any discrimination or attitudes about disability because I did not look disabled, and for the most part, my health did not affect my mobility or other daily activities. I truly encountered my first problem with someone's attitude against disability when I accepted a new job and tried to arrange for parking within my mobility limits.

Then there are the other days. Days when I am lucky to make it out of bed and off to work without crying from the pain. When simply buttoning a shirt makes me cry. When the visible signs of my disability are there, be it my cane or the obviously halted gait or a limp, I don't have to explain myself quite so much.

But then, I am different. Though I am no longer scorned for using the disabled parking spaces, I am stared at. People point or whisper as I pass them on the street or in the store. Or, on the other end of the spectrum, I am ignored. The door that was being held open for the woman in front of me slams in my face. Then the middle ground, where complete strangers feel compelled to ask what "I did to myself".

Back and forth, I float between two worlds. Neither is better than the other. It would be far better if everyone treated each other with respect. I don't expect everyone to understand what I am going through or how PA affects my life. I do hope that they will respect my knowledge of my body and my illness enough to trust my decisions.

1 comment:

Ruth said...

I have a few really good friends with disabilities, like yours ,that vary. It presents many challenges in terms of adjusting constantly to your changing health/body. It's unfortunate that you also have to deal with the external pressures you describe. You hit the nail on the head though about respect and trust. Thanks for participating in BADD - you offer a thoughtful and very important view here.