I want to talk about an aspect of disabilism which is highly unpopular to talk about: As far as I can tell, we westerners are a highly selfish group of people and thus, don’t give much thought to those other than ourselves. Any example of the way a terrorist attack killing 2,000 (which happens so often) is reported compared to 9/11 or a natural disaster killing tens to sometimes hundreds of thousands is not held in the same reverence as Katrina to Americans, of which I am one, demonstrates this. Why? Well, because we are ‘more human’ than other people, people in other countries, people of other skin colors, different people. We are different, we are special. We are selfish and self absorbed culture.
And since the majority of people with disabilities, impairments and diseases come FROM that group and social upbringing there is a great deal of element of selfishness in disability culture as well. Part of it is due to the nature of survival: a person needs to prioritize themselves in order to survive long and short term with disabilities/diseases. But part of it is because this is what we were taught.
Humanity is diverse and complex. And much like I said at 18 and 19, “I am not racist” and was very upset when a black person said, “You just can’t see it.” Most people, I believe, don’t actively believe they are selfish (except regarding Xmas mall parking). But also in the same way, I realized one day: that when I got dressed up and waited at a corner for a bus, the police did not assume I was a prostitute. Nor when I went shopping in Washington DC was I followed around the store by owners, or the police on the assumption I would steal. Or at department stores, I was not followed by underclothes waiting for me to shoplift. Nor were my friends and family, my brother, stopped on the way to his wedding on the assumption that dressed up and in a nice car, he must have stolen it. Nor have any of my relatives been held or questioned for a crime on the basis of a description that is as vague as “black male” or “arab”, so that I really DID NOT know what it meant to be black in America. The same I learned, by listening, was true on what it was like to be a Muslim woman in America. To live in fear outside the community from your own citizens, to see your male relatives pulled aside at airports, to be spat upon. To know you are a citizen but you are not given EQUAL protection from the police. Nor for those who are from India, or from Japan, or China, or so many other places. I was, indeed, because of my stereotypes, because of the simplification in my head that my experience MUST be theirs, a racist.
Disabilities are diverse and complex. And yet, I have, several times simply let people assume I am a spinal cord injury rather than try to explain a complex truth
(That I have a presentation of a rare disease that is about 1 in 65-125 million). I have been accused and am accused of lying almost daily (multiple times many days) on this blog because, I simply write my experience (the people do not read back they just find something like, “I am brain damaged yet can write ergo, lying” As I said to Linda, since I was reading La Mort de Arthur at eight and the Odyssey at five, how damaged and brain regressed do I need to GET I wonder to go down to the level of some of the complaints “You speak much good, I think it not to write so good and be sick” – um, well, I have written with 106 degree fevers but still not used a lot of double positives. I am sorry, but how I communicate is writing, if you want to see me stutter and not be able to say the word ‘blue’ then come and see me. Sigh.This that a person who has a degenerative illness could never be depressed, or fatigued so that the hours it takes and effort it takes in leaving the house when you need to sleep in five hours are not enough: that simply is not believable...except to those with degenerative and certain chronic illnesses.
How could the truth be believable when we are taught that disability itself is simple. There are fakers (those who have Chronic Fatigue or Fibro), there are spinal cord injuries who are in wheelchairs (despite that the majority of women in wheelchairs are NOT spinal cord injuries), and there are ‘women’s diseases’ like MS, or Lupus, or Lymes which sort of like everything female are mysterious, probably involve fluids and pads and such and are best not asked about. I forgot the ‘tragic’ diseases, like Cerebral Palsy, which kill off all these poor, sad children (I know that they live to adulthood, but who are you going to believe, TV, or the truth – historically, we choose TV). And then there are the big names, which are not illnesses as much as causes, like breast cancer (which is so touted as curable and a fundraising event that people forget that a) people still DIE from it and b) having your breasts cut off might not be such a fun and wonderful thing, and neither is chemo). Then there is just ‘cancer’, and we raise money in bake sales and 10K’s and the people in Japan and some other Asian countries think we are sort of disgusting. In Japan you don’t even TALK about bad things in case they happen and here we are virtually ROLLING around in cancer going on and on about it (without any of the actual ideas of what it is about as we interact with six different carcinogens going home from the 10K to raise cancer awareness).For simplicity sake (sigh), I will try to classify the diseases/disabilities/impairments into a couple categories (sorry, if I miss a few); birth disabilities/diseases, Spinal cord injuries, chronic diseases, degenerative diseases (both starting as children or adult). There are of course thousands of disabilities, diseases and other conditions
like Gillian-Barre syndrome for example, where in 24 hours, your brain expands, and you are paralyzed in some parts. Over the next several years SOME but not all of the people get some or all of that motion back. Just a spontaneous BOOM! No way to avoid it; eating enough blueberries doesn’t make sure you don’t get it. Just BAM, you are paralyzed, welcome to disability. People who have things to do, selfish people, don’t want to hear that. Don’t want to know about it. So they do the ‘cancer’ run and read about how to live until 94. Except there is RSD, which I know a few readers here have, where the nerves for pain are just turned ON…all the time!The problem is that in disability land, which is often organized or templated by able bodied people, so that it tends to resemble a giant crip camp, where a person either meets expectations, or is expected to ‘try’ and give it their best, is complexity is bad and simplicity is good. SCI is top generally. Why? Well because the people CAN get stronger and are, depending on the break level, able bodied people sitting down (a para is optimal for able bodied people AND disability organizations – as the ‘Wheels in Motion’ organization for example will not take anyone who has sustained a head or brain injury). They are the ones who can go to schools. They have the energy levels and closer actions so society can relate to them easier. Plus, there is a simple and UNDERSTANDIBLE cause (which usually is listed as ‘tragedy’ rather than, “I was acting a bit like a risk taking jerk’ - as is the way SOME SCI occur, every single traumatic event which creates a SCI is different).
So it is SIMPLE and lots of money can go toward trying to get this ONE THING solved (the spine cord nerves reconnected) to make them AB again or to make their lives as close to able bodied as possible. This of course ignores the reality that the winners for the Ms. Wheelchair America for three of the last years were women with Muscular Dystrophy. And one was stripped of her title for STANDING UP. The truth, which is complex is that yes, some people with MD and many people with SCI’s can stand up or even walk a step or two (depends if you can ‘knee lock’). That is complex, and so, instead of educating the public, the Ms. Wheelchair America (whose goal it is TO educate the public, according to the advertising) was stripped of her title as you are required not to stand…..in PUBLIC. Keep it SIMPLE.And this follows over into disability land: A person with fibromyalgia experiences more lower body pain than a parapalygic generally and has a WORSE quality of life and more limited life (this is a GENERAL example, and yes, bed sores, turned on nerves and other things change that - but it isn't a race, but an co-understanding - except that often, sadly, it isn't!). That is a VERY offensive statement to many people with disabilities, it SOUNDS like a slap in the face. Except it is true.
What about Oscar Pistorius the double amputee and possible runner for the Olympics, the question wasn’t just for the able bodied but the disabled community: “Should he be ‘allowed’ to run” – allowed? Never is the thought that perhaps his blades on which he runs have limitations put on them much as other athletes have equipment limitations, nor is the general OR disabled community educated on how often and why a person with a leg amputation/s would require a refit. How for women, having water retention during a period causes a rubbing, a bad fit, as does losing weight. And yet, these again are people who are, in most cases, able to do what they wish 18 hour days a day. Some, like some SCI’s don’t want to be considered part of the disability community. I was told this by a man at a hospital, “I don’t want to talk about disability, I’m not like YOU, I’m not disabled.” He said before, in the SAME titanium chair as me, spinning around and wheeling off. Hmmm, do you think the 15 people STANDING in line think we are different, that there goes an able bodied person and here remains a disabled one?
I know that each disability has knock on effects, there is a greater risk to other diseases and infections (bed sores, amputations, and other life and body changing issues). Nothing is simple, it just appears that way. But there is still a mental stigma. So when I say, honestly, that someone with Chronic Fatigue Syndrome or M.E. has a poorer quality of life than a person with a single limb amputation is one which gets immediate negative feedback. Why? One will have a job in two years, the other will be still trying to find the energy to brush their teeth TWICE a day AND get dressed before sleeping. No, not in all cases, but then that is because disabilities, diseases and impairments are COMPLEX. Except WE have accepted the attitudes of the people who have set up this ‘crip camp’ disability community we inhabit. This person is ‘tragedy’, this other is ‘lazy’ – where is the money for people with Chronic Fatigue to go hang-gliding? Or have hand-cycles?
For example, why, when the majority, it seems of women with disabilities and diseases are of limited energy and resources is the movement focused on ACTION or sit-ins or protests. Why focus on activities requiring getting out of house when many/most cannot do THAT. Or can but cannot say when they will be able to. Why are those who have the energy and the mobility automatically the voices for disability. I ask that because I WAS one, in my community, which I found at the time funny because a) I was newly disabled and I pointed out to the reporter several female long term disabled people instead. But more important was b) I was doing things able bodied people could understand and relate to like 10K’s and boxing while lying there and doing postcards is not really the same level of compatible understanding. They don’t understand why getting dressed and putting in earrings when it takes over an hour and I am not going outside is IMPORTANT,
or that it takes me 4 to 10 times the energy NOW to do those things I just mentioned (postcards, dressing) than when what I did last year. That isn’t a story, me wheeling around cemeteries is a story (so it seems).I was interviewed and published in a magazine for boxing about being a female wheelchair boxer. I never told anyone about the publication because I did not feel this was who I was, nor, while I want women of all ability in sports, did I feel the ability to do two rounds should define who I was, or give me status in any way. Not when my disability was ignored except, that I was disabled and did it ANYWAY. Wheelchair+boxing= don’t need to know disease or situation but inspirational.
If there are many people with a condition, like MS, you can get things done, for instance you are on the official list of people who can take legalized marijuana in Canada, while the hundreds of linked diseases, including basic to complex autonomic failures are not. People who don’t get out, or are in a hospital bed don’t get petitions in Ottawa signed.
Why DID the MS people not rewrite their petition so that it was “MS and other people with autonomic or similar MS symptoms?”
They did so because “MS” is simple, one in 750 people will get it. People KNOW of people or have heard of people, someone’s wife who has it. While the other is complex, and so, the MS society decided to make it SIMPLE. And so they got on the list, and they got funding.My point on blogging is this, we as a disabled community come from a self absorbed culture and often we suffer the same failings. We do not know if someone else is having a hard time because we don’t know the basic nature of their disease; the one thing they know by heart.
I would place the percentage of people who have a disease/disability/impairment or are professional care givers of such that they are ‘terrified’ by seizures or having one as between 90-95% (over 100 people have said this). Yet almost 1% of the population have seizure disorders, or will (now including me). Yes, the people who have attitudes of dis-ablism include the disabled. The ones who feel there are ‘too many diseases out there’, who ‘don’t really get CFS/M.E.’ or ‘why is it all women with something else have fibro too?’ (which is a very interesting medical question but is asked to imply that maybe fibro is just a name for what used to be called ‘hysterics’). My father, who has the beginnings of a neurological disease and does not yet know if it is ‘life shortening’ (terminal) but certainly quality of life diminishing, is scared of ME. He is not sure how to deal with, or even try to understand the complexity of his daughter’s disease. I bring that up because, when the time comes for HIM to need care, why would anyone who is able bodied bother to try and understand the particular needs of HIS disease (he at least has a vested interest in knowing his child’s disease).And indeed, people don’t, including those who make a living off of different illnesses or disabilities. I have yet to go to a doctors office that has a space FOR a wheelchair to sit in the waiting room OR an examination room where a manual or electric wheelchair spot is created into it. I include the Booth-Gardner center, which specializes in Parkinson’s and autonomic failure, of which the FIRST sign is orthostatic hypotention (the inability to stand up without passing out). Yet….no accommodation for wheelchairs. These are the care givers, the able bodied people who are suppose to have dedicated their lives to giving a damn about people with disabilities, diseases and impairments. While the number of meetings with disability organizations which didn’t ask or even adjust after basic info like, “I am heat intolerant’ is given, was many. And this was, in my observation because of the assumption that all ‘heat intolerance’ was the same: either MS ‘heat intolerant or, Quad like, not autonomic failure like. But if I had quads into MY office, they would literally go into shock, because 55 degrees is NOT a good temperature for someone who is quadriplegic, yet we are both ‘heat intolerant’. But do most quadrapalegics know that? Do most people with autonomic failure know that? In my experience, no.
We have one of the greatest tools of learning possible, the internet. And yet, to give an example I have tried and tried to get three circles and carnivals: the disability carnival, the EMT carnival and ‘The Rounds’ – the carnival of primary care givers and physicians to interact with each other, to even READ each other’s blogs, without success. The EMT blogs are full of accounts which are humorous or annoying from an able bodied view, but meanwhile traumatic from a person with a disease/disability/impairment’s view. And so I read the account putting names of the people I know or readers to these accounts in which the EMT’S made no effort to learn more about the hundreds of diverse ways in which even a ‘common’ disease like MS, or Lupus, or CFS/M.E. can manifest. Then on to the junior doctors and caregivers, who could be learning from the people themselves, or reading their accounts in the blogs. No, they are too busy with the self absorbed humor and pity parties of having to deal with an impacted bowel (Parkinsons), or another person brought in by the stupid EMT’s who thought they were drunk but actually heat intolerant (MS or autonomic failure). So they write about shifts, or about the time wasted, about the stupid EMT’s, about the stupid or time wasting patients….. And so all of us, particularly those in need of support, are alone.
The possibilities are there, be we don’t WANT to do them. We don’t even want to learn or share about ourselves, so often have we been burned. I will soon be going to a spina bifida clinic, because I, like those with spina bifida, have strips of nerves that seem to work and large strips that don’t and so for basic things like self catheterizing and other possible quality of life issues the clinic may help me. Did I know about Spina Bifida? Yes, sort of, some. Did I know enough? No. Not enough to see even the basic comparisons in how my life and theirs was overlapping until someone who deals with dozens to hundreds of diseases/disabilities/impairments basically smacked me upside the head and said, “Go there!” and explained why and a light bulb went off. So, can knowing about each other improve our own lives (for those only selfishly interested): YES! Should the face of a community be only those who fit into the classifications of a certain level of mobility, of energy and of simplicity? No! Because that is not the truth, and if we are going to be a community, let us learn the truth as we already battle enough lies and stereotypes about ourselves to add more about others within our community.
Eliminate dis-ablism by examining your own attitudes and limitations of knowledge, as I will be doing myself.
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