An interesting thing happened to me this week that has really given me a lot to think about. It’s not something I considered before, but am now wondering why it never occurred to me.
If you have a visible disability, ie you use a wheelchair for mobility or have a seeing eye dog, the general population will see you as disabled or differently abled. As MSers we all are aware that some disabilities are invisible. I have no obvious sign of a disability and even a doc would be hard pressed to find me disabled. I work full time, participate in family and community activities, exercise on a regular basis and do this without any assistance mechanical or otherwise. OK, so the Wookie helps me clean up the apartment from time to time, but he’s also at my place so much, it’s only right. But if you didn’t know me and the fact that I have MS, you wouldn’t consider me disabled.
This week, I was meeting with a couple of the gals at the MS office about an upcoming political meeting I will be facilitating about disability issues. I was asked how I wanted my bio to read: member of the disabled community or someone with MS or whatever? I was taken aback because I don’t identify myself as a disabled person. I am a person living with MS, possibly with the threat of disability, but at this point in time, I am not disabled. Yet, these gals consider me a part of that community.
Very interesting, I thought. The gang I work with don’t consider me part of the disabled community (I've asked them), but a couple of the gals at the MS office do. This event, though a small one, has left me wondering about a number of things. Who thinks of me a member of a disabled community? Who doesn't? Because I have MS, does that automatically define me as disabled? When I was using a cane and couldn't drive because of right sided weakness and numbness, I didn't consider myself disabled, though by definition alone, I truly was. It never crossed my mind.
I asked the Wookie for his opinion about my abilities. He said it all depends on the context. He's seen me on those days when I can't go another two feet and have to lie down. He's seen me drop my utensils at dinner and had to rub my feet to ease spasms. Those times he knows I have MS and though not medically disabled, definitely affected by symptoms. Most of the time it's not apparent.
I did a quick search on the net about "self reporting of disability". I came across the WHO website and read a few things about the subject. I now realize that there is much more to disability than physical disability. Socio-economic factors, personality, and education all play a part in how we define ourselves and how others perceive us. And that is an important reason why governments, charitable organizations, and health care workers have to consider treating a person's life and not just their disability. It's fine for a government to provide an accessible bus or taxi, but the cost may be prohibitive for its use. An organization may provide a wheelchair but if the home the person is living in has a bathroom that's too small for a wheelchair, there's not much point.
Disability is so much more than a physical state. It's a state of mind, too.