Trump World Grab-Bag--A Collection

Sunday, May 1, 2011

Disablism--it's really about any of us, isn't it?

My father is disabled. He's the smartest, handsomest, strongest man I have ever actually known, my first great role model (aside from Mom) and he has rheumatoid arthritis, which is warping his joints and has been making his life a pain in the ass and everything else for several years now. He doesn't look disabled. He looks like a tall, muscular, distinguished man who would otherwise meet any convention of "This is privileged guy".

He isn't. He mows his awesome-looking lawn--and has a lie-down. He washes a car, and it takes a bit out of him. The relentless need he usually has to fiddle with things and make them better sometimes takes a pass....when joints are sore, and the body needs what it needs.  A cup of coffee. An analgesic. A little bit of shades drawn-down. A nap, just for this bit. And that kind of looks like what his needs were when he was still working--only he pushed himself to exhaustion to make himself do the things that once came easily--work a full day. Manage pain. Stay useful and do what has to be done.

I don't have my father's sense of "hustle". I'm a slow-starter, and he' s a self-starter.  He relearned how to earn a living once he couldn't work by learning how to manage his nest egg and invest well. He, because of the down-time he had because of his disability, was the primary caretaker for his own parents in their twilight, and he also now monitors his elder brother, who had a debiitating stroke. The truth of our human bodies is, we are all mortal, and we all can have something fail.

My knees creek. My neck aches. I worry that I have a predisposition to the condition that is slowly robbing my active father of the activities he had--and in light of this, I realize I might have to do something similar, and plan for when I won't have the strength to do all the not-very-physical things I do. I am fat, but I know I look "abled":. My dad is tall and still has some muscle--he doesn't look the way people think of as "disabled"--but it happens to be true.  I think there might be a lot of people who can't do all they could or would--and are very silently disabled. They just can't self-identify or aren't medically-identified because they lack privilege to be identified as having a real disability. And pretty much like my dad would've--they continue on, working out of habit with diminishing physical resources, blaming themselves and thinking they are maybe getting lazy. When the reality is we are mortal and bodies break down.

I already anticipate that I will cope with disablism. If any of you anticipate living long enough--you will also. I want to do it the way my dad is--making use of the windows of time when he can be engaged, to engage. Also respecting the times when he needs to retreat, nap, fuck it all. He still has fun, he still thinks about the future--he's disabled-not dead.

He's discounted as disabled when he parks amd has to show his papers. He's assumed abled in some situations. He faces indignities because of others' cultural assumptions about the privileges he otherwise would enjoy--except for retiring a bit early, and limping whilst walking the dog. And just like he's been my role model for speaking out and being myself and not accepting bullshit--I want his example of how to be disabled--with dignity and on his own terms, and rigorously engaged in his treatment and willing to try new things even if every treatment has been another indignity because his body isn't easy to placate--to be a model for me, if I find myself disabled.  He accepts the realities of his body, to care for it--but also demands his body accept who he has to be. He is my still my role model, not just in how to manage strenghth and a reflexive sense of humor--but how to manage pain, and accepting doing a  little less, and thinking a bit more. He's always given me a lot to think about--and I think he always will.

I only love my father more for watching him deal with his condition.I should only hope to do as well myself.

1 comment:

Ruth said...

Great post for BADD. Thank you for writing about these experiences.