Not since I began blogging in 2005 have I had as much fun following and manic link-chasing a number of folks I read under the hashtag #solidarityisfortheablebodied. They talk about their experiences, that vary widely.
Someone was touched without their permission…and I nod in agreement. That’s happened to me.
Someone had their symptoms minimized and tossed off by a doctor….I nod in agreement. That’s happened to me.
There is an elevator in the building…3.2 light years from my office cubicle…and again, I nod in agreement….and on and on and on.
It is heartening to know that all these nutty things have happened to so many of us at the hands of the able bodied…that we are not alone.
And sly Lawrence Carter Long…he isn’t afraid to call the emphasis on people first language a “cult” when it gets so overdone that taking the time to explain it and build it out and use it…is the oppression of time lost better spent calling out ableds and others that are Doing Things Wrong.
I want to make clear I think shooting for people first language is a good thing…but even that shouldn’t get in the way of the actual work:
And for a few tweeters I found dissing the hashtag:
Okay. Let me boil this down for you…so there is no mistaking why people are crying out when these things happen:
R E S P E C T. Sing it Aretha. We aren’t getting enough, and by God, we want some now.
We were at a picnic. Enjoying the Ohio late summer stuff…I think this would have been 1991 or 1992. My husband was enjoying the picnic and enjoying being around friends, but his HIV was beginning to show….he was gaunt, pale…fatigued that day.
There are many different strains of Christianity…One of them the charismatic sort, emphasizes the Holy Spirit and it’s gifts (In my opinion it steps on that nerve to its own detriment, deemphasizing grace, struggle, social justice, the value of each of us just as we are, etc, but that is only my opinion.)
And one of these charismatic, laying on of hands Christians looked at him and gave him the Enormous Pity/Tragedy stare…walked up to him and asked if she could lay hands on him.
Immediately he ceased cheerful banter and shut down. His mouth got hardand his hands got still. He advised his mother, because he was having trouble even looking at the woman directly, that he wanted no such thing. This sort of healing was something he had feared and avoided ever since he was just a little kid with hemophillia. She tried to play the peacemaker between the two and get her friend to back off, but her eyes only got bigger and sadder and she said “Oh, please…”
I was afraid he might lose his temper, as he did often, but I was equally afraid that he would give in. He was a Baptist, and generally while Baptists are with the charismatics on hellfire and damnation they don’t hold with speaking in tongues or laying on of hands or other such woo-woo traditions.
Instead, I saw something atypical for him. He surrendered. Just as against it, but clear that he wasn’t going to win this one. He slumped down on the bench, pulled inward and downward and lowered his head.
It was actually harmful. It looked like a kind of mental torture for him…because as clear-eyed as he was at that point about the terminal nature and trajectory of his illness, he was a devout guy. This woman, while well meaning, I’m sure, was putting her hands on him and unwittingly passing on the anguish of a thread of false hope, or driving the point home that even if some part of him believed God *could* heal him, that it was clear to him, as it was not to this woman, that immediate miraculous physical healing was not something God was going to use on his journey.
Afterwords we left, and the experience clouded his mood for sometime after that.
I entreat and implore *anyone* who believes in this stuff to keep their distance from persons with illness and disabilities to keep great space between us, unless we ourselves come to you and ask. (It’s right up there with that cloying, annoying “God told me to tell you,” phrase. God is not a celestial gossip. If he speaks he speaks to individuals about *themselves!*)
My husband did not need to be dragged into the faith healer tent…if anything what was needed was what he got from his closer friends in the faith community, and asked for often. Prayers for strength, for endurance, and space to allow him to question the very existence and closeness of God.
If you feel the need to pray for someone, unless they ask for public prayer or laying on of hands…instead, pray privately, fervently, where it may do much more good than harm.
One personal one not, seem to have converged under “Background check consequences.”
I have a good friend whose medical status caused her to have to resign her last position ( due to a painful, ongoing disability) without notice. She has another job, but it’s part time no benefits. I firmly believe that when she applied for more than 100 jobs over the spring and summer, the reason she did not get a single one of them has to do with her credit score and her last employers admission that she is not eligible for rehire. (to protect themselves, of course they do not go into *why* ) Was she an extremely competent, well liked and award winning employee at her last job? Yes she was. But all that goes out the window because she committed the unpardonable sin of leaving without notice.
She’s living in one room in a rooming house. Has been for two years, and she cannot even use the kitchen there because it is one floor above her (thank God she’s on the same floor as the shower and laundry) She needs health insurance and at present cannot get it, and may not even be able to get anything affordable on the exchanges because there will be no Medicaid expansion in this state. Her car has died because she hadn’t the funds to repair it. She has type two diabetes, and uses busses and walks with crutches. She has lost the padding on the bottom of her feet for some reason and is literally skin and bone with every step. She also has severe diabetic neuropathy with no way to afford the Lyrica that would ameliorate that portion of her chronic pain.
Her disability claim was denied (!) so she keeps working, with the chronic pain that is constant and also keeps her dealing with insomnia, not to mention that fall and winter are coming and they will make bus travel extremely dangerous for her. Essentially, the consequences of a correctly run background check for her mean no chance to get a real apartment, a full time job, or healthcare at this time. All for the crime of leaving a job without notice because she was dealing with painful ongoing impairment.
Then there’s Aaron Alexis, the shooter in DC.
The consequences of the background check run on him for his contracting firm by another contracting firm, (Source: The Rachel Maddow Show), is that no one found or acted upon his history of mental health problems…so not only did he get to keep a job he never should have had access to without managing his mental health…the end result has been the deaths in DC.
Screw up with [your personal] money and leave a job too quickly and you never get a decent job again, apparently.
Have a visible ongoing record of mental health issues that made you a danger to yourself and others?
Work on, dude. Work on.
That’s fucking wrong. I don’t know how it can be fixed but it’s fucking wrong.
Now that was never really said to me…it’s just a ridiculous attempt by me to shorthand this excellent article
which is a scholarly treatment of why persons with disabilities are oppressed when it comes to intimate relationships. I’ll go further and say excluded from experience of intimacy, partnering etc.
I saw the subject and said “Oh no, wait a minute, that’s not true…” but then I read the whole article.
Yes, my experience is quite different from the take of the article but I guess there are aspects to my experiences that make mine the exception that tests, and in some ways, validates what the author of the article is saying.
I had a very visible disability from birth (cerebral palsy)…
My late husband was not able bodied, we met at a camp for kids with disabilities. So, for those that knew him well, they never gave him the pitying stare about having to “take care” of me because he struggled with impairments of his own…But.
His physical disability did impose specific limitations on him (don’t do contact sports, don’t live more than two hours away from a hemophillia treatment center), but when it was just hemophilia, except for a slight limp, he could “pass” as nondisabled, and did so often. So strangers did treat him as able, and if they overtly spoke to him about “It’s noble to take care of her,” or some diminishment of me like that, I never heard about it and he never mentioned it…with the exception of one relative’s comment to him that “You can’t marry this girl!,” to which he answered “Watch me!”
I was not conventionally good looking in high school. Then got less and less “acceptable” as time went on.
While I did experience a great deal of the aversion of able boys while trying to date in high school, and to a lesser extent college, I met my future husband in high school, we dated a bit then, I had another boyfriend, he had a couple other girlfriends, and then I re-met him in my early twenties and by the time I was twenty five I was married, matching the earliest members of my high school class, all able but me, and beginning the rush to the altar that same year…. So by the time I hit my mid twenties both myself and my husband were on the same romance/sex/marriage timeline as our able bodied counterparts.
When I lost my husband in 1993, I also matched a behavior of a lot of able bodied widows…I had a bit of a wild streak that lasted about three years. I was beginning to make unwise and sometimes even dangerous choices after a bit, so I pulled out of that stall, and stayed alone by choice for a few years. I had another boyfriend. That ended badly for reasons having next to nothing to do with my disability or his. Haven’t the able often had that relationship where they look back and say “My God, what was I thinking?” Again, a similarity, not a difference.
But my life since about 2002 has mirrored that in the article pretty well, Age and body shape have factored in more and more….
So are the disabled as a group oppressed in matters of intimacy? I think so, based on the experiences of myself in later years and many friends with disabilities throughout their lives….and the reasons and structures that contribute to that are exactly the setups the author explains in the above article.
What I can’t figure out is why I missed out on that particular oppression. Over the long haul, it didn’t touch me much before the age of 40. (Though it’s darn well locked in now.) The article is very well done. I encourage folks to read it.