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brightlotusmoonMy darling Cara Liebowitz wrote a lovely post that I had to share:
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"I was going to bed, I swear, but The Brooke Ellison Story is on TV. Gotta say, as cheesy and inspo-porny as it is, I love it. And on some level, I AM inspired by Brooke Ellison, mostly by her sheer determination and drive to not only succeed, but excel, not only in the face of such a life changing injury, but in the face of everyone who told her she couldn't do anything.
I don't know, I feel like maybe its different for someone with an acquired disability. For us congenital folks or those who acquired their disabilities very early on, we just go along living life the way we know how. We've never known any other way. But for folks with an acquired impairment later in life, especially one as severe as Brooke Ellison's, it requires such a radical restructuring of your life and worldviews. I am inspired by those who push through and come out the other side. I'm not so sure that's wrong.
Thoughts?"
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I shared this because it is exactly how I feel regarding being a congenital and seeing an acquired do something dubbed "So Inspirational TM!". In the disabled community, most of us have a very strong opposition to "inspiration porn" - (the most well-known example, perhaps, being that Scott Hamilton quote and poster of Hamilton and a child both with those expensive prosthetic legs, saying 'The only disability in life is a bad" attitude" and any photo of someone in a wheelchair or crutches with a quote of "If they can do it so can you" or "What's your excuse" Fuck I hate those phrases so fucking much fuck fucking fuck - But every so often something comes along that falls into a category) that is only mildly inspo-porny and actually uplifting, even though nothing inspirational actually happens that we can see.
Like the quoted story, about a woman who becomes paralyzed and gets into a top-rate university after overcoming many challenges. Now, to people like me and Cara, with our cerebral palsy, it's like, So? That's it? What else happened? What made her so incredibly inspirational that it required a sappy movie? Why isn't there a movie about my life? I was born three months early in the late 1970s, nobody really cared about my cerebral palsy because it was mild, nobody thought I was autistic because it was the 1980s when autism was barely being looked into, I in fact had no idea of any of my invisible illnesses until I was in my late 20s... You get the idea.
Now, I have extreme respect for anyone who must go through a radical reconstruction of their identity when something like an acquired disability happens, because fucking fuck that is shattering and destructive and requires a particular rearranging of so many parts of their lives and their thinking.
There are some acquired folk who get snotty about it and either insist that everyone must "fight for a cure!" or throw themselves a public pity party and beg everyone to "find a cure!" which I can't really sympathize with.
Then again, I'm the type of cripple who embraces my cripplehood... because I have never known anything else. That may, in fact, make me seem snotty, snobby, snooty, etc.
But having a disability that permanently impairs daily life, whether congenital, acquired in very early childhood, or acquired later than childhood, changes your mindset, outlook, and indeed your soul, in ways that nobody can predict. And sometimes, you literally have to just roll with it. Limp with it. You know.
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"I was going to bed, I swear, but The Brooke Ellison Story is on TV. Gotta say, as cheesy and inspo-porny as it is, I love it. And on some level, I AM inspired by Brooke Ellison, mostly by her sheer determination and drive to not only succeed, but excel, not only in the face of such a life changing injury, but in the face of everyone who told her she couldn't do anything.
I don't know, I feel like maybe its different for someone with an acquired disability. For us congenital folks or those who acquired their disabilities very early on, we just go along living life the way we know how. We've never known any other way. But for folks with an acquired impairment later in life, especially one as severe as Brooke Ellison's, it requires such a radical restructuring of your life and worldviews. I am inspired by those who push through and come out the other side. I'm not so sure that's wrong.
Thoughts?"
*
I shared this because it is exactly how I feel regarding being a congenital and seeing an acquired do something dubbed "So Inspirational TM!". In the disabled community, most of us have a very strong opposition to "inspiration porn" - (the most well-known example, perhaps, being that Scott Hamilton quote and poster of Hamilton and a child both with those expensive prosthetic legs, saying 'The only disability in life is a bad" attitude" and any photo of someone in a wheelchair or crutches with a quote of "If they can do it so can you" or "What's your excuse" Fuck I hate those phrases so fucking much fuck fucking fuck - But every so often something comes along that falls into a category) that is only mildly inspo-porny and actually uplifting, even though nothing inspirational actually happens that we can see.
Like the quoted story, about a woman who becomes paralyzed and gets into a top-rate university after overcoming many challenges. Now, to people like me and Cara, with our cerebral palsy, it's like, So? That's it? What else happened? What made her so incredibly inspirational that it required a sappy movie? Why isn't there a movie about my life? I was born three months early in the late 1970s, nobody really cared about my cerebral palsy because it was mild, nobody thought I was autistic because it was the 1980s when autism was barely being looked into, I in fact had no idea of any of my invisible illnesses until I was in my late 20s... You get the idea.
Now, I have extreme respect for anyone who must go through a radical reconstruction of their identity when something like an acquired disability happens, because fucking fuck that is shattering and destructive and requires a particular rearranging of so many parts of their lives and their thinking.
There are some acquired folk who get snotty about it and either insist that everyone must "fight for a cure!" or throw themselves a public pity party and beg everyone to "find a cure!" which I can't really sympathize with.
Then again, I'm the type of cripple who embraces my cripplehood... because I have never known anything else. That may, in fact, make me seem snotty, snobby, snooty, etc.
But having a disability that permanently impairs daily life, whether congenital, acquired in very early childhood, or acquired later than childhood, changes your mindset, outlook, and indeed your soul, in ways that nobody can predict. And sometimes, you literally have to just roll with it. Limp with it. You know.
no subject
Date: 2014-02-02 01:08 pm (UTC)I have memories of things I will never be able to do anymore. I will never be able to do the 14m hike to see the beautiful meadow that there are pictures of me in as a child. A drive to Seattle -- much less doing any touristy things -- is enough to leave me wiped and exhausted. I sometimes have to use a wheelchair. I have permanent cognitive damage from a medication that was supposed to help my fibro, but in fact made it 3x worse -- permanently. I have virtually no memory of the 4mo I was on that medication; I can only remember brief flashes. I was so bad off then that I would forget in the middle of a fifteen minute conversation what I had said at the start of the conversation and start repeating it. Thankfully, the cognitive issue are nowhere near that bad, but it is enough to affect my writing; I have to now keep copious notes, because I cannot trust my memory. I will forget something important (and then be convinced that it was so great that I can't make it up, and become depressed over it).
Now, even though I was disabled as an adult, my situation is still very different from Morgan's and my ex drake's.
TW mention of rape in this paragraph
Drake was in his 40s when he was diagnosed with an autoimmune condition, ankylosing spondylitis. He was an utter douchebag, but becoming disabled -- he has let it destroy him. He has worked all his life, since he was 12yo. He was supporting his mother, who was getting something like $90 a month in child support payments, if that, and he continued to support her until her death. He has always had a job, and he's one of those people whose self-identity is completely wrapped up in his ability to work and provide.
Morgan's disabilities started to appear after a car accident in 2004. In 2006, they were diagnosed with fibromyalgia and hypermobility syndrome. The diagnosis has hit them pretty bad, too; they are able to work by virtue of that their company allows them to work remotely, and they allow flexible hours. Morgan's medication sometimes makes them loopy or tired, and often they get migraines, so sometimes they will be up in the morning for a Google Hangout meeting, get a migraine, or meds kick in and make them tired, take a nap, and then pick up their work later. On top of that they have a sleep disorder (not apnea; there is no treatment for what they have) so often they are sleeping in the day and awake at night. They have frequently done work in the middle of the night. Thankfully, their job considers their flexibility a bonus, not a drawback.
(cont'd)
no subject
Date: 2014-02-02 01:09 pm (UTC)But the difference between them and me -- I became injured at my first job within three months of working there. Because I was in Texas, and in order to get that job, I had to sign away my OSHA rights, I could not get workman's comp. I did not know I was still covered under my father's insurance (to be fair, they didn't realize this either, until I later on had to beg them for money to see a gynecologist for my constant bleeding and my then-girlfriend's excellent doctor versed in fibro for the chronic pain) so I was unable to walk for the most of six months, and my legs healed wrong. I have never been able to be self-supporting, because I was disabled so early as an adult.
It's still hard, because there are things I wish I could still do, and I wish I could still work, because I actually did like the damn waitressing gig, but I can't. But I don't have the internalized shame that Morgan and drake have, for being disabled and having difficulties with or being unable to work. Morgan worries about what will happen to us (and I worry too) if their disability progresses to a point that they can no longer work, even remotely.
Would I like a cure for fibro and RA and EDS? Yes, I would, because these things cause me pain on a daily basis, and impact my life negatively. At the same time, I see the same sort of people you do, who seem to only talk about finding a cure. There is more to life than that. I hope that medicine will find a cure or at the very least better treatment in my lifetime -- and that is entirely possible, given that there has been great leaps in medicine in just the past fifty years. But I don't see the point in dwelling on it. I have my life to live. Disability makes it more difficult, sure, but it's the hand I was dealt, and I'd rather make the most of it and focus on what I can do rather than what I can't. (And I know that sounds ironic when I just above listed a bunch of things I can't do, lol.)
I don't think your view makes you snobby. I can -- hm, I can logically see where you're coming from, even if I have a different emotional perspective. If that makes sense. Argh, this is really rambly, written under the influence of painkillers that make me chatty, so I hope it makes some modicum of sense, and doesn't offend.
no subject
Date: 2014-02-02 08:41 pm (UTC)