(Many apologies to my fellow crip bloggers for the lateness of this entry -- last week really was a weak from one of the lesser circles of hell. This is my entry for Blogging Against Disablism Day -- May 1st.)
Sometimes, people will discuss the question: When defining yourself, which do you list first? I.E., a woman, a professional, a Baby Boomer, a law school graduate, a person with a disability, heterosexual, a "single", a pet owner, etc. While sometimes I think this is a frivolous question, I think it can also be extremely illustrative of not only how one thinks about oneself, but also how one's experience shapes that self-image.
Years ago, either in my late 20s or early 30s, I figured out that if you answered this question based upon what factor/attribute has had the most impact on the totality of your life, then "person with a disability" was an easy, hands down winner as the first thing I would mention in defining myself.
No Hiding Possible
With my disability there isn't, and never was, any option to hide it or "pass". I've never not had it, since it is congenital, and the gene mutated long before I popped out and shocked the world and my parents with the odd appearance of my skin. Both adults and kids were scared of me -- so much so that I got shunted off into special ed, even though I could have managed the physical demands of a "normal" elementary school, with the one exception of p.e. I could read before most kids, and was extremely self-possessed. In the era before the IDEA, I wouldn't have needed any classroom assistance even if it had been available.
No, it was at the age of five that the discrimination began, and my parents colluded -- partly out of fear for me I suppose, and partly because they taught elementary school in my very district and didn't want to rock any boats. My parents -- with the best of intentions (although I personally despise the excuse for any bad behavior that the perpetrator is "well intended") made me feel that I must cover myself up (put your socks on, Pete is coming over) because I looked scary to other people).
The meta message was also that it was my job to make other people feel comfortable with me [since I was the different one]. There was never any indication that others -- children or adults -- had any responsibility to treat me with respect, even before they found out what was "wrong" with me.
I have a vivid memory of being nine years old, already in special ed, and asking one of the teachers, "Why is it okay to send me to a separate school because of my skin [my disability] when it wasn't okay to send kids who were black to separate schools?" This was the height of desegregation and the Civil Rights Movement -- the 1960s. And I remember that she just looked at me, with a mixture of exasperation and mystification.
I didn't enter the realm of non-segregated education -- meaning being counted on the same rolls as every other student in an educational venue until 1975 when I entered Community College, under my own steam.
Doctors never suggested a wheelchair -- or more appropriately, a power chair -- for me, even though the main problem with my disability was blistering on my feet, which was caused by...wait for it...WALKING! So, I walked with difficulty, until one day in special ed at the age of 11 or 12, I casually commandeered an extra manual wheelchair which I would use all day at school. I pushed it with my feet [some have likened this to Fred Flintstone in the old cartoons, and I think it is appropriately descriptive], but because my body weight was mostly in the chair and not on my feet, I was much more comfortable.
When I went on to high school (we were still on the rolls of the county's special ed program, but were more or less integrated for most of the day), I insisted that this spare wheelchair be kept in the "resource room" for me. I picked it up every morning, and an aide would take it back to the classroom for me when we boarded "the short buses" at the end of the day. Because the classrooms in which I took classes weren't set up with wheelchair accessible desks, I parked in the hall and walked in and sat in a "normal" desk. I didn't do this to feign being more normal, but because it was the only option that made sense to me.
The non-disabled friends I eventually made -- after a few years of being in classes with them and being a good student with a sense of humor -- were able to grasp the fact that I could both need a wheelchair and be able to walk.
College, jobs, more college, law school, more jobs, independent contracting, losses, successes. Through it all, the crip card was always on the top of the deck, and not because I insisted on putting it there. That is another discriminatory concept that gets imposed on people with visible disabilities -- that if we acknowledge that people treat us differently, for good or ill, we have a chip on our shoulder. Maybe I do, now, but I didn't put it there in the first place. And it falls away very quickly when I sense that anyone I am dealing with isn't treating me in a "less than" way because I look different, and certainly am a far cry from the idealized standards of appearance that women are brainwashed into thinking as the only acceptable way to be in this society.
Romantic relationships -- pretty much off the table. Perhaps there is a guy out there for me, but I may not ever meet him. And I [mostly] made peace with that, at around 40.
Where it still makes me deeply, bone shatteringly angry is when I still encounter it in the workplace -- particularly with people I've known for a long time. It just happened again the other day -- a person above me in the food chain treated me disgracefully. And, I am certain, because she knows that I can't just simply quit -- I don't know how long it will take me to find another job, even though I'm very experienced and very, very good at what I do.
And why is that? Because of my disability, in part at least, always. I am a person with a disability -- first, last, always.