Random Thoughts- Where Do We (Figuratively) Stand

It’s been awhile, I know. I got a sick. Actually, I had a month and a half of pain that knocked me on my-. Let’s just say unless I was ferrying my daughter to school and back, I was in bed screaming. It is amazing what you can do for your child. At 15, she is astonishingly self-sufficient, perhaps too much so. But I am a one parent household. And now, thanks to a second disability that is a lot like trigeminal neuralgia, but isn’t, it’s atypical face pain (that goes through my whole body, but I guess they don’t have an insurance billing code for that) I find that my daughter sometimes feeds me. It makes me so sad- I’m supposed to take care of her. She says she wants to be like me, still, and I don’t know why.
I am allowed to make myself feel bad. I shouldn’t. It’s not my fault I’m sick. I feel better now so I am doing more. I am doing my best. Which is why I am so angry about a blog posts I read on Huffington Post.uk I have to call this individual out. His name is Simon Stevens, and he calls himself “a leading independent disability issues consultant, activist and trainer” (don’t ask me how you train someone to be disabled, but if you have suggestions…) But he wants me to feel badly for not working. Actually, in a post written August 5, he basically says ‘I have CP, and is “…’sick’ from a nerve virus four years ago as well as having mild bipolar” and he works, so why can’t everyone else who claims to be sick and disabled?
Seriously? Now I know, this is from the UK, but England was home to some great disability rights ideation long before the US– they still are, even though right now funds for people with disabilities receiving services are getting major cuts. Conservative papers are calling people with disabilities ‘shirkers’, accusing them of faking their illnesses in order to get funds. Simon Stevens is squarely in their corner.
Everyone is entitled to their opinion, and should share it.People with disabilities should work and should be given every opportunity and resource to work. That is an opinion that I agree with, by the way. But insults are not opinions. Someone with CP knows how tough a day can be. I am assuming he can use his imagination and say “Gee, someone might have a more severe case of Cerebral Palsy, or Muscular Dystrophy, or stage 4 cancer. How about schizophrenia? I could go on, but I don’t think Simon Steven cares.
And that’s the problem, isn’t it? People caring about issues pertaining to people with disabilities.This is different than asking people “Do you care about the disabled?” What schmuck is going to say No to that? But the real issues? Yesterday Sen. Ted Cruz got up to babble on the floor on the Senate. At last count, he was there 18 hours. Why? To either stop ObamaCare (or the Affordable Care Act, which makes it sound, you know, good) or the Senate, which doesn’t do anything anyway. Except. There are some Republicans who have decided they would much rather shut the government down than sign people up for health care. But ask them if they care about the disabled- of course they do- the private sector will take care of it. Which is another way of saying “We don’t want to work on it” Private sector doesn’t want us, remember- we’re the people they wouldn’t insure, remember?
So where are we, in this age where every other minority seems to be coming into its own in terms of pride and recognition? Are we proud? Not the Simon Stevens of the world- he seems disgusted by his own, and I think he must feel ashamed of himself on some level to constantly pick on other people with disabilities for not being at his level and then saying everyone should be an individual. (On an individual note, learn how to use SpellCheck and other editing tools.) Are we recognized? As individual diseases that must be eradicated. Every weekend there is a new walk, every month is dedicated to something, every ribbon color is significant.
But there is hope- the amount of Universities that offer Disability Studies is growing. Sometimes it is a minor, or offered through a School of Health or Social Work, but it doesn’t matter how information gets out as long as it gets out. This is the beginning of recognition as Women’s Studies and African-American Studies was for their respective groups.
I don’t know what the near future will bring, but I know that I do not think people like Simon Stevens and Ted Cruz will be standing, literally or figuratively, in our corner.

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