It’s hard sometimes, but worth doing

September 14, 2015 at 7:29 AM (Uncategorized) (, , )

Celebrating their success is a great thing. You get to hear about how people you like and people you love got to do what they were meant to do and excel at it. You can laugh over their stories you can feel the pride of accomplishment. And if you are a person without children that pride and accomplishment has to go somewhere else so… If you have other relatives or friends who you are proud of who do amazing things if you take time to celebrate that you get positive vibes out of it yourself. I have two family members I’ve been watching with pride since they were children and I continue to get great joy out of watching them succeed.

But. In this world where we only put our best foot forward on social media , if you see someone successful you’re only getting that successful side to them, and you get a misleading picture that that’s the only part of them. And if you have disabilities and medical challenges and body issues, I’m not going to lie it’s very difficult to celebrate someone who appears at first glance to be perfect. Able-bodied good looking with the perfect career. You work to maintain that supportive stance with them and it gets harder. Until you’re open with each other usually on a one to one basis and you realize that that perfect person on Facebook isn’t. They’re struggles might not be your struggles but they do have them. they have cracks in the armor. There are bad days for them. Its not that you’re happy to see the bad days , it’s that being human  has to show through.  When you see some common ground it is easier to love the uncommon things they do.

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Inclusion

March 20, 2014 at 7:52 PM (Uncategorized) (, , , )

so. its high school. My friends and I are sitting around at my house debating what to do that night it was a group of at least four people and probably more.

My best friend at the time came up with an idea, “Let’s  go roller skating!”

I raised my hand and said rather sarcastically, “Hello,  I can’t do that,” and she got this look and burst out laughing, “Oh my gosh, I forgot! I forgot you couldn’t do that!” They hadn’t made me invisible or forgotten I was there, they had simply forgotten my disability for a moment. we went off to do something I could do and I appreciated that very much.

my best friend of those days and I aren’t speaking anymore and that’s a good thing for me for reasons that have nothing to do with this post.but I want to give her credit for having a very involved idea and a very young age that disability is something to be included not excluded.

the only thing I feel bad about looking back to those days since I’m much much older now is this:  Did my group of friends  miss out on things they would have rather done that were more physically involving like sports  or going hiking in a park because I couldn’t do those things? I wonder about that because I didn’t have the self will at the time to ask them did you ever get to do those other things the roller skating the hiking perhaps at a different day and time when I wasn’t around or I wasn’t interested so that you could go do them and not miss out.  I hope so. Because during those days, everyone should get to do the things they want to do.

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Thank God for Twitter. No, I really mean it.

November 16, 2013 at 3:58 PM (Uncategorized) (, , , , , )

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.

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Two things that make me angry

September 17, 2013 at 10:00 PM (Uncategorized) (, , , , , )

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.

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“It’s not me, it really is you.”

September 16, 2013 at 8:02 PM (Uncategorized) (, )

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.

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