Sunday, May 03, 2009

Blogging Against Disabilism: disabilism within disability

I am late for BADD because I was disabled. Not able to write and post. But now I am, so here I am.

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.

32 comments:

JaneB said...

This is another really great post, if a little uncomfortable to read (which is surely the point) -you are a very good communicator and teacher! And the pictures illustrating it are absolutely beautiful, and so relevant.

seahorse said...

I always find the truth here. It's a pretty special place come to think of it :-)

thea said...

Wow, a great post. Bit uncomfortable, but my understand of what that means is that it is time for another learning experience.

I'm glad you pointed these things out. We probably need to hear them many times because we're all so accustomed to the familiar things and scared of what we do not know so cannot face.

But somehow you make it seem possible to understand even a little better.

Jane's right. You are a good teacher.

Neil said...

As eloquent as ever, I see, no matter how much effort it takes you. I'm here to learn, and you're a pretty fine teacher, Beth. That's why I'm still sticking with you. That, and you're such a nice person.

But the people with Parkinson's who can use marijuana legally? I'm told they can use it, and possess small amounts, but they cannot easily purchase it. Just like us, it's illegal for them to grow their own, illegal to buy it off the street. It's illegal to sell the stuff, except that which is (was?) government supplied; and that stuff, grown in a Manitoba mine somewhere, didn't work, because the quality was so bad.

But thank you again, Beth, for helping me open my eyes to the people around me. You're making me a better AB person, helping me to try to understand that the disabled - which is ALL of us at some point - are people worth talking to, worth understanding. Because some day, "we" are going to be "them."

Love and hugs, and positive energy for less pain today,
Neil

me said...
This comment has been removed by the author.
Elizabeth McClung said...

Sarah: I would love to hear your experiences, and I am sorry if I have offended you or failed to represent para's accurately. I have in previously blogs, repeatedly stated that the reason there are many male para's to female ones is that females are NOT generally risk taking (and thus did not include it again), and that is certainly NOT the way all para's have a spinal cord injury (it is however the way some do); however, I could not find a stat on that percentage. I do know that the ratio of males to females in my area is at least 9 to 1 however. I also did a blog about para's who can stand or walk a few feet including some of the most visable Canadians, like a TV broadcaster, and one regarding my interactions with 'Wheels in Motion' amoung other SCI groups. But then, being human, I can get things totally and completely wrong: please educate me as how I have so badly screwed up. As I said, I really do want to learn.

JaneB: if you mean 'unconfortable' as in, likely to get me a shellacking, I think you are totally right. I also know that there are there we aren't 'supposed' to say.

Seahorse: Er, thanks, I forgot to write in that disability/disease/impairment isn't a contest, I probably should have done that again, in case people think I am doing something other than picking out the clearest, most often stereotyped examples.

Thea: Well, you can disagree, I don't mind, if you find parts you disagree with, I certainly cannot be correct with all my understanding, with so many diseases/disabilities/impairments, I am probably going to get it very wrong indeed. But then unless I write down what I DO know or understand, I won't get the chance to be corrected.

Baba Yaga said...

'me': I can see why you react. The disability blame game is *so much fun, haha.

However, I don't think Beth's comment was about paraplegics (note that she emphasised "some"), so much as about the business of disability stereotyping. I've occasionally had fun coming up with Unpopular Disability Slogans: "disabled people can be scroungers too" is *never going to catch on. But of course, some of us are!

And some of us are risk-taking jerks. Unless we *really* think only people who become disabled by strokes of awful luck 'count', are deserving of human respect (which is the foundation of everything else people end upfighting for), it should be o.k. to admit that.

The thing is, stereotypes, including supposedly positive ones, limit us all. Every time I 'pass', or fudge the issue - and I do the latter as often as I can't do the former -, I'm reinforcing a stereotype; just for ease. But effort devoted to easing the straitjacket instead of taking it off leaves us confined.

Sheesh. Days without words and now I'm waxing philosophical!

Veralidaine said...

I've been doing the "examining my own attitudes" thing a lot more lately than I used to, ever since I realized maybe I'm not the token non-disabled reader here that I always considered myself. I consider myself disability-positive, but yet there I am thinking "Well, I may have a problem that stops me from even talking to people some days, but hey, I'm not disabled!"

Great post Beth, it helps me sort through things.

Elizabeth McClung said...

After Sarah/ME pointed out I was illustrating one stereotype by falling into another I changed the wording from 'risk taking jerk' which came from Murderball, my Wheelchair PT, Terry Fox about Rick Hansen and other sources to "some" - every SCI is different and people take risks every day, why some end in SCI and some don't, is random. However, there seems a higher ratio of males to females as Para's because females don't often do the types of things which lead to SOME SCI's (motorcross, tackle football, etc).

Baba Yaga: Actually now I think about it, my recent 10K was EXACTLY the type of 'risk taking jerk' event which leads to injury, and it did, knocking down my immune system so much I have been getting to know the bathroom tiles very itimately until 6 am last night, and 7 am two night before and passing out and all that fun stuff. That however was my choice, and I suffer the consquences of that choice. I don't know anyone who HAD a choice on disability - I certainly didn't remember the school guidance counsellor bringing it up as an option?

Yes, I agree, Baba Yaga, if we are human and thus deserve human respect, then whether we are risk takers or not, jerks or not, we still deserve human respect and accomodation. Thank you for educating me, reminding me - I get so worried about offending people some times I lose the big picture.

Elizabeth McClung said...

Neil: Sorry, your comment got stuck in the moderation thing somehow. Yes, I CAN get it easily because I live where it is grown but I get what you are saying as it takes a great deal of effort to have the system set up even once you are approved. Actually, I should be able to ride on the back of Parkinson's to get official approval - I won't take it without a doctors note, just my thing.

And to be honest, I've never considered you a full AB, because anyone who vomits for seven hours due to migraine seems to have some sort of impairment. I mean, yes you can ride a bike and I can't but you can't ride the bike when the migraine says no, so like me, you are somewhat restricted by your condition. I hope that doesn't offend you, I think most people if they examine it find that they either with mental issues like my medication for depression or ones like migraines or allergies have impairments which affect quality of life (believe me, hay fever, I have seen, affects quality of life!).

Veralidaine: I think we are all token non-disabled and perhaps impaired in some way. I certainly, when I have my game on, don't see myself as disabled if disabled means, "Go easy on me in badminton" (cause you LIKE losing to the girl in the wheelchair?), but then lots of people have issues on which accomodation need to be made, both within the self and from others - like communication issues or allergies - as Abi said, the BBQ's she looks forward to are the ones she KNOWS where people are already planning to accomodate her - and really that is it for me and I think most people - knowing you are going to a safe space, a place where people want to accomodate you, don't make an issue of it, makes all the difference - and education can help that happen (I believe!).

Lene Andersen said...

This was fantastic. It reminded me of the talks we've had about the "proper" way of acting to get agencies, etc., to give you what they're supposed to give you - act like they're doing you a favour, profuse gratitude, etc. It took you - new (at that time) to this world - to shake me out of what I'd come to accept as normal. Likewise, I think it takes someone who's brilliant, new to being disabled and who has a disability that includes several of the "categories" to see clearly. And to point out that we can becoem a force to be reckoned with if we started seeing similarities instead of differences.

I'm going to be thinking about this one for days.

Raccoon said...

"But for the grace of gd, there go I."

I've been aware of some of what you talk about, in my own life, since I was a teenager. I always attributed it to the "difference." They were/are "different" than me.

I don't know if I would call it so much selfishness as self absorbed.

Comparing symptoms, on the other hand, is something that I don't think I've done. I'm better than you, I'm worse than you; I know that I've not said "my symptoms are the same as yours," though.

I'm going to have to think about this post more.

Raccoon said...

me, as an SCI quad, I actually found Elizabeth's comments reasonably accurate. The majority of the wheelchair users that I know/have met are male, and the majority of them got their injuries through "physical" activities -- maybe not necessarily extreme activities (diving into a pool is generally considered extreme).

But, I read the essay after she amended it, so maybe I missed your point?

Anonymous said...

hi, i read you and you make me think. i am gay male hiv+ and also severe depression. i also hurt, ache constantly. you inspire me to think about life and living and i get confused and overwhelmed. you have helped me to think through some of the things that happen to me. i am slowly degenerating. i still work but i don't know how long for? i try not to be scared and ashamed but i get scared. thank you for having words i don't, i feel some of the ways you talk about but i dont' know how to say it.

thea said...

Sorry, I meant by 'uncomfortable' is that I feel the need to look at my own attitudes again as much as other people do, and that can be an uncomfortable process. Didn't mean you.

I wasn't disagreeing with things you said, in fact I agree that many of us find things threatening so we move away, close our eyes. I'm glad you pointed this out. It's dangerous to allow oneself to do that. If (when) too many people do that, that is when people get and stay seriously marginalised.

Elizabeth McClung said...

Raccoon: I had listed the quote, about a 'bit of a risk taking jerk' as it is a quote from the documentary murderball, from Terry Fox, from several other people I know. However I assumed (which is me being lazy in thinking) people would know that it only applied to some of the people and that I was not placing blame but showing how SCI's are sometimes, um, publically spinned for fundraising reasons. I added the line about 'some people, and all SCI's are different' to make that clear, I am glad she called me on it, if there was confusion and would like to know what other fiction I can understand and change to fact as the point is, I DO want to know.

I also added a small parathetical about bed sores as I had forgotten about that. Writing all at one time tends to make me too focused.

I think now reading back that using 'selfish' once for shock value is okay but you are right, I think people are self absorbed, I don't think most are deliberately being selfish, but just self absorbed.

I too know that your life is different than mine, but I still want to know about your conditions, though I KNOW it is a private medical issue which each person can decide what they want to share or not, as it is THEIR right - not public's right just because they want to know, "Hey, what happened to you!?" - Because for me, it is like a linked chain or like Ringworld (Niven) - I want to know the connections, and when someone explained for example that being sick and losing weight meant you need a NEW prosthetic, I realized that it was not as simple as the stereotype makes out, it is a self monitoring, complex system of stability or there is many weeks having to try and get a new prosthetic. It was an 'ah ha!' moment.

As for me, having the no movement bowels, I want to know the trick that quads use which is some sort of digit thing, and believe me, I have had digits up there (many) and never found a magic button so that info is actually interesting to me. Yes, a year or two ago I would have been, "Uh, I don't like hearing about that stuff" but now, I am like, "I have passed out a couple times on the toilet from heat exhaustion, and also fallen off due to muscle weakness, so yeah, speeding up that is important - and when peeing is a 20 minute job and I am too tired to pee, a 1-3 minute self catheter would be a BIG life improvement"

Too much info? Darn. I don't think we are all the same, but knowing symptoms allows me to accomodate people AND helps me understand why they prioritize what they prioritize.

Thea: Yes, when there are people that those in the disability community find 'scary' and marginalize them, then that is exactly what I would like to avoid. I don't know how to make seizures less scary, I guess I can't but maybe I can make people more used to them. People who work with youth of various disabilities get used to them, care workers, some, who have experience get used to them. Harriet McBryde in her book on Crip Camps talks about people with Seizure disorders as 'walkie Talkies" meaning they walk and talk and seem normal until they don't, and they do things with hands and head and make sounds that aren't what we know as human at all, and after that everyone is scared and everyone knows that they just LOOK like a walkie talkie, but are really one of us (the disabled).

Anon: Well, I hope I make sense as I am sometimes very confused myself and the hurting doesn't help for clear thinking, at least that I have found.

Thanks for letting me know that. About the words. I am going to talk next about grieving and shame, as I am having problems myself in that area and I want to try and capture them and then have some fun, do some fun (take a look at the Uke posts!). I am a coward and try not to look at all of what I am now in one go, just the pieces, as it just seems to much, too overwhelming for me. Sorry, that wasn't very positive, thank you so much for reading.

Lene: Yeah, who knew I was supposed to be subserviant, and here I thought the term 'public servant' meant that they signed up to help ME, not vice versa like them have money and me have nothing. I want to know and I think that we are so often brutalized in our private medical information used against us, used without our consent that to share, to come together and talk about it like Linda finds at the care givers network - it bothers me that SHE knows more about different disabilities/diseases/impairments than I do because she talks to the carers of family members, while I talk TO the family members - for them, the conditions are vital, it is how they do the caring, for us, we want to forget that, and be recognized for our wit, our insight, our hobbies. I want that too, but I also want to know, what makes you or other people have a bad day, have a good day. How can I share and celebrate without understanding?

cheryl g said...

Thank you for such a great, thought provoking post. It has certainly given me much to ponder. I am often bothered by those who treat illnesses and disabilities as some sort of weird contest in "who has it worse" or "who has more pain". That is irrelevant. My disabilty is different than yours. Not better, not worse - just different.

The pictures you used also illustrate your points beautifully.

yanub said...

It's true that there is a disability heirarchy, both within and without the disability community. I'm glad you are talking about it, and I am glad that there are words being exchanged, even heated ones, because this is something that needs talking about and not talking about it doesn't make it go away.

I have wondered myself about the minimal contact between disability bloggers and medical bloggers. You'd think the medicos would be curious. But then, the same can be said for political bloggers or sports bloggers or just about any focus. Still, since the doctors are the ones who have been given the keys to our fates (who here can avoid them? who here hasn't fought them to meet basic needs?), it would be helpful if they maybe checked in on what their "chronic" patients deal with.

Kate J said...

Here in UK, n-one gets to use marijuana legally, although a "blind eye" is sometimes turned, I gather, to people with MS. Not always, though, as a friend of mine found out to his cost...
A wonderfully enlightening post, though. I guess I sort of imagined all these "disabled" people supporting each others' rights, when all the time there are hierarchies of disability, and some people are excluded even from certain disabled groups, sports etc... the old divide and rule I guess. Actually it reminds me of when some women, even feminists, started getting good jobs but then failed to promote other eve when those women were right for the job. "Liberation one woman at a time, starting with herself" seemed to apply. And now to find it's the same in disability.
Anyway, a very informative and thought-provoking post.
Love & peace

Baba Yaga said...

I educate *you? That's a turnaround.

But you got me thinking; risk-taking jerk is another stereotype. OK, two stereotypes are probably marginally less stifling than one, but still. When you're a risk-taking jerk, we call it "being EFM" (possibly with exasperation, but that's another matter). Because you exist in 3 dimensions for us.

& for people with fluctuating or deteriorating conditions, if not for everyone, the alternative to at least sometimes acting the risk-taking jerk is probably determined valetudinarianism. Somehow, our task is to walk the line between the two without wobbling off to one side or the other; or at least, without wobbling too far to either side.

The disability hierarchy thing has a lot to do with the human tendency to think in stories, and dualisms, doesn't it? We like bold stories about Good vs. Evil, rather than about lesser evil versus greater evil, or goodish versus baddish. We like people to be Ill or Well, but not variably both. So those whose stories are (or can be made to seem) simplest shove those whose stories can't be made simple down the hierarchy...

If I admit, offline, to being mad, I admit to it (fudging) in terms of PTSD, because that implies a simple story, in which the bad is an outside force; whereas the truth contains a long list of my own fuck-ups, too. And by choosing one side of the dualism, innocent victimhood or culpability, by pushing myself up the hierarchy, I tacitly endorse the other side of the dualism, and the very existence of the hierarchy.

(No, this is not comfortable. I think that's a good thing.)

Diane J Standiford said...

I once wrote about "The Hierarchy of Disability" and there certainly is one. My MS is out there, while my partner suffers much more than I do and through the eyes of most of her family, friends, and doctors: It is all in her head. I couldn't agree more with your points. When will we evolve? For too many, nothing another experiences is real unless they TOO experience it. Global warming? Nah. (But ask the polar bear hanging by her nails on a tiny piece of ice.)

Neil said...

On the days when I'm laid out with an abdominal migraine, yes, I'm thoroughly disabled then. But everyone who gets sick enough to stay in bed (flu,colds) is temporarily disabled.

What I meant is that everyone will be disabled at some point in their lives. I've been forced into a wheelchair in hospitals because they didn't want me walking to the x-ray room - it was easier to wheel me, but not let me propel myself. I've had casts that left me mostly one-handed, and once a cast from crotch to ankle on one leg; very awkward on the toilet with diarrhea. :)

Some seniors have to rely on the health system for everyday needs - assisted toilets, help in bathing, or bed-ridden due to brittle bones. We'll all be there sometime. Some sooner than others, unfortunately.

And where was the school guidance counsellor when I needed a hernia? Or Human Resources Canada, who claimed I could do any job I chose? Worked for Purolator Courier for three years, got a hernia out of it...

Yes, Thea, that post was uncomfortable to read, because the truth hurts sometimes. Learning can be painful.

Love and hugs to all, including our anonymous friend!
Neil

Stephanie said...

This is an amazing post. Thank you for bringing all of this to our attention. I need to re-examine my own selfishness now.

I particularly like the picture with the woman holding her heart. Haunting.

FridaWrites said...

Anonymous, hi, welcome to the disability blogging community--hope to see you commenting again. Your comment brought tears to my eyes--I recognize the pain and difficulties working (as Elizabeth points out, the commonalities among disabilities are important). I started out commenting anonymously on Elizabeth's blog myself.

This is so rich and thought-provoking--my husband kept asking me last night, aren't you coming to bed? But I was still reading, still reading--arg, concentration issues. But I came back to it.

One problem I've run into is similar to the "why can't you be like your sister?" phenomenon that some people do to their kids. And that's why can't you be like x person with an SCI who has lots of energy, y person with spondylitis (with a less extreme manifestation and no OI and multiple other compounding issues), z person with back pain and spinal surgery who was back at work the next week? What they miss is that I *do* physically *want* to be that much more physically able. I really find I don't mind scooter/wheelchair use so much except for the bias/access issues--but I'd give a lot to have more energy and to have pain level reduced enough to work more efficiently.

I have been dismissive of fibro when people try to put *me* in that category--because I feel like they're using it as a wastebasket diagnosis or are actually being dismissive of me, down to ignoring lab results. But I hope I don't dismiss others with it by doing that, much like the wheelchair people who say they're not disabled--I know it's a real illness and see its effects--sometimes I think that there's much more going on that we don't have a handle on, just as with multiple sclerosis in the past, and that someday people will understand. My guess is something going on with muscle metabolism or muscle biochemistry, which is not something we're far along on--someone with a rare muscle disorder is unlikely to get a diagnosis unless they're lucky to find the right researchers/specialists. People with lupus, MS, muscular dystrophy, arthritis, ALS, stomach problems, all kinds of problems, can often be dismissed as psychosomatic even now or until they get new drs. If it's not common, it often gets equated with hypochondria or mild physical problems with greater psychological issues.

One woman who has severe COPD--I was empathizing with her about it since I have relatives with it--mentioned that it is disabling, then was apologetic because I am using the mobility scooter and she didn't mean to imply the same level of disability. I immediately said, no, your COPD is a disability! I wanted to feel welcome in "the club," not apart. It can be alienating for people to feel that disabled but feel like they don't belong. And it is truly disabling--my grandfather has a hard time getting out of the house because of it and cries from distress and pain and inability to breathe; she's close to that level but still has to work.

I like the woman in kimono and the women with lights pictures.

wendryn said...

Thank you for the post. I grew up working within a community of people with disabilities, but even with that extra sensitivity I still stick my foot in my mouth at times. It's hard to get out of our own heads, but it's very important. I'm still learning, too.

Denise said...

Playing the "disability olympics" is just as unproductive as the "incest olympics" or the "abuse olympics". That friends of mine have suffered more at the hands of their family members, that my spouse did not beat me (and in fact prided herself on not beating me while she tore me to shreds emotionally) does not make me NOT a survivor of incest, rape, or domestic violence. That one disability is "more disabling" than another does not change that both are disabilities.

On some level I am annoyed by such upstaging because my experiences tend to fall on the less severe end of trauma. My abusers all skated a line between tolerable disrespect and abuse of power. I have a lot of respect and sympathy for those who have suffered more than I, and I do not intend to equate my own experiences with theirs. However, presenting their stories as the "right way" to be abused makes me feel invalidated, much like I had the (invalid) option to say No every time. There are productive things to learn from each other instead: personal healing, working to change the patterns that land us in repeated abusive situations, coping skills for when we lose control, advocating for and supporting each other.

We all stand to learn from learning and listening to each other, even being more open about conditions which are mostly annoyances rather than obstructions. Several of my friends have hearing impairments, and I've learned a lot about verbally communicating more effectively from them. My ex-wife was partially colorblind and I know a number of people with poor/partial sight, and from them I learned ways to make my electronic documents and presentations accessible, convenient to navigate, and intelligible.

And I should read up on more, because even though my family history indicates I'm more likely to suffer from something which will kill me quickly, accidents happen, and my profession exposes me to chemicals my relatives could only dream about. And even if "it won't happen to me", it'll happen to someone I know.

Maybe if I commented more often I'd be less rambly when I did. Hrm. Maybe I should post in my own blog, eh?

rachelcreative said...

Very well said Elizabeth. A great great post. With wonderful illustrations as usual.

FridaWrites said...

Denise, you're definitely right. That someone else has a more severe condition doesn't negate our own--people often use that to discredit us or not accept what we're saying. Since our condition isn't as bad as someone else's (up to the point of death), then our concerns aren't valid enough to some people--nothing is disabled enough.

One problem for me with milder disability was that I had to take certain precautions to avoid becoming more disabled--and people made fun of me for that--and I couldn't take some of the precautions when people wouldn't allow me too (my new male supervisor literally forced a heavy stack of books into my hands, even as I was saying I couldn't, which left me bedridden later!) and therefore did become more disabled.

Yes, when people say, "it's not as bad as 'x,'" maybe it's not as bad as x, but they're missing the point.

Never That Easy said...

I've been thinking about the "right way" to be disabled and about how much of that attitude has to do with how we, as disabled people, are perceived, and how we see ourselves. I haven't come up with an answer yet, but I think your post comes up with a lot more for me to think about.

sarah said...

SCI & paraplegia are certainly not able-bodied ppl just taking a seat, that is a very myopic way to look at a catastrophic and chronic disability. the 'jerk' comment and the rest of what you wrote appear to be aimed at specific individuals and organizations and their representatives/memebers and maybe you forgot about those with SCI that would feel the shrapnel as a result, I don't know. I have no idea who rick hansen is, but watching a movie, and getting other secondhand information is not enough to be able to say something as cruel as that comment was about ANYONE. it would be like saying you brought your disease on yourself b/c of your sexuality. he may be the biggest asshole on the planet, but no one deserves to be in a wheelchair or otherwise ave a catastrophic injury/illness.
and btw, a lot of the guys in murderball are incomplete SCIs which means they retain some ability to feel/move unlike those of us with complete injuries that cannot. there is a huge difference in those lifestyles and abilities.

Elizabeth McClung said...

Sarah: I am sorry that you don't seem to want to take my apology or spend more time educating us, and sharing at least in this venue. But those offers are still open.

The view of para's as seated AB's was one which I wrote was upon which AB program are created as indicated at the top of the paragraph. I agree it is a simplistic stereotype and would be willing to help you in your protests against those orgainzational views.

However, to direct what appears to be anger over the system in place at me because I wrote it, exists, it is I believe, unwarrented and I feel that while it is unlikely you will apologize, that I would appreciate you toning down the personal direction of your comments. And quite honestly I don't think many of the ideas about people like people with CFS/M.E. being 'lazy' or people with Fibro being 'lazy' or people with Lupus being 'female and no understandable as a disease' are as you say, "enough to be able to say something as cruel as that comment was about ANYONE" - this is why I wrote the post. So people with disabilities/diseases/impairments will stop accepting those kinds of statements from either society or the organization set up to 'help us'. I hope you have as much focused energy the next time you hear someone with CFS/M.E. referred to as just "not trying hard enough" or "Lazy".

Also, try to remember that when a couple sentences out of a couple thousand word post on over a dozen disabilities/disease/impairments creates a response that it is only THESE lines that matter (as I said, I look forward to further education of all of us), then can you think of the "collateral damage" or "myopic way" you are approaching this and how that affects other people with the rest of disabilities or diseases or impairments. The "rest of what you wrote" it appears, unless you want to clarify, refers again not to the actually REST OF THE POST, learning from each other, not letting the hierarchy imposed upon up dictate our self and view of others but rather the paragraph on SCI and paraplegia. I find that singular view that only that paragraph matters hurtful and not respectful of the other disabilities/diseases and impairments being talked about.

Well, I believe there is Wilkipedia if you want one view of Wheels in Motion or Rick, sort of like saying, "I don't know who Mother Terera is....." - As for me having a disease because I am a lesbian, that is an opinion, I certainly have been told often or that God have given me this disease (which again I have had a few post here about) and in some ways I agree (how else would I get to learn that I HAD be a privileged ass and learn about all of humanity, not just those 'just like me'.

I believe if you read the lines you talk about closely, the point is that you can be an asshole (which I did not say, I said 'jerk') before AND after a traumatic injury, indeed, I was, as the documentary and many other SCI's want to emphasize, a full person, and if that includes still being the same jerk as before, then that is entirely possible. (indeed due to a link of stats on your blog Mayday which I did not use due to not listing where the stat were aquired, what number or what year - 48% of traumatic injuries were in vehicle accidents another 28% I believe in sports - interestingly, though more females drive than males, the ratio of tramatic injuries was about 9 to 1 in auto accidents. Did anyone 'deserve' it? No, but is it spun by AB people in order to downplay the risk behavoir aspect of SCI's in order to present them as the closest solution for which money should be spent? I believe so.)

As I corrected thanks to your earlier comments, the assumption I made was that individuals would know this, you made me realize that was a stereotype as well, I am well aware of the limitation and not only those playing wheelchair rugby and basketball since I have done the rating process. Though SOME of those featured in the DOCUMENTARY murderball are incomplete para's, the remaineder of those on the court cannot be in order to keep within the team point limit (each player is given a point value based on the rating of mobility, autonomic function and other issues - each team can only have so many points on the floor at any one time to keep the teams even).

Interestingly, Canadian Wheelchair Basketball unlike US, does not limit able bodied individuals if they want to play (they merely get a high number) as a form to try an improve understanding and integration into the sport.

Thank you for coming back to contribute to the discussion.

sarah said...

you've lost me. I think we are both talking about different things. from the way I read your post and your comments, it was your voice and not those of organizations when it came to the commentary on the life of a para.
the guys in murderball are quads, not paras. paras are banned from quad rugby so they couldn't dominate it on a competition level. clubwise no one generally cares and I've been invited to play. seems totally fair to me since I have my hands and they don't. there was a lot in murderball that wouldn't be apparent to someone w/o an SCI, like what the hell is zupan doing with washboard abs?? ohhh what I would do to have some abs, sigh.
sorry for the confusion.