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Archive for August, 2010

One of the problems with support networks is that the people in them have their own priorities. Now, that’s not anything against them – every person has different priorities from the person standing next to them. Even if you take a couple in an incredibly close relationship, they’re going to put different value on things. That’s the nature of human beings.

The trouble creeps in when the priorities downright clash.

Right now, I’m not supposed to be walking much at all. Not until I get my new knee brace, which should be the middle of next month. It’s inconvenient. It means that I have to use my scooter everywhere, and that’s a bit difficult. You see, I live in a house with 3 steps up to get in the front door. So I can’t just wheel my scooter out the door. Also, I don’t have a trailer or hitch-mounted carrier for my scooter, so to take it places, it has to be broken up and put in the trunk, then hefted out and re-assembled. The scooter breaks down, sure…but even broken down, there’s a 50-lb piece, which is far more than I can heft without hurting myself.

Now, typically, the boyfriend does all hefting of the scooter, and drops me off places. However, the boyfriend’s uncle just died yesterday, and he’ll be driving a couple hundred miles to his family for the funeral. He’ll be gone from Tuesday until the weekend, most likely.

I’ve called friends, and no one is available. I thought I was in big trouble. I really can’t get around without my scooter!

I lucked out this time – my neighbor is willing to give me a hand. We built a ramp a while ago, but it’s too heavy for me to move. My neighbor will put the ramp into position so I can wheel on out. I’ll use public transportation (which includes a longer ‘walk’ than I can do even when my knee isn’t busted, but I’ll be on wheels!). When I get home, my aide will put the ramp back out at night so I can come in (or she’ll break down the scooter and carry it in piece by piece – that may be easier for her, because she’s a small woman and the ramp is 8′ long).

It’s scary, though, when you need help and you go through your support network and NO ONE can help. It’s frustrating! Part of the problem is that when you have a major disability or a chronic illness, your support network is often thin because of the sidelining affect that ablism has on you and, well, we’re often less able to go out and socialize. So you end up leaning on everyone harder than you should. You find yourself begging favors of the same handful of people over and over and over, and you can only hope that you don’t burn them out.

And when you burn out one of the few people who helps you, man are you ever in trouble. So far, thankfully, I’ve been able to avoid asking the same people for favors more than a few times each (with the exception of the boyfriend, who kinda does everything), so I’ve preserved my social network as best I can. That looming threat always worries me, though…the thought of ‘what would you do if one of these people stopped helping?’

One can only hope it never happens.

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While I’m disabled by chronic illness, I have kind of an unusual story for that. My transition from able-bodied to disabled was much more like that of someone who’d been in an accident. Fine one day, not so good the next day, and really awful for the third day…and staying that way.

I went more or less the typical stages of grief, though a little out of order – denial, depression, anger, and finally moving on to more-or-less acceptance. I really never did much bargaining; the closest I came to that was hope that we’d find the right medication and I’d be cured. Obviously, as I’m writing this identifying as a person with a disability that involves chronic pain and fatigue, that didn’t happen.

I’d had a weird episode of pain in my joints in the fall semester of my first year away at college. It lasted about 4 weeks. We never did figure out exactly what was causing it, except that my anti-nuclear antibodies were up, which indicates some auto-immune action. It went away on my own. Remembering that, I spent the first several months in denial about what was going on, and believing it’d suddenly get better like it had years before. Yeah, that didn’t happen either.

I think it took me 3 months to accept that it wasn’t getting better, and then I went ‘well, if I’m not getting better, I’d better settle in and deal with it.’ That was when I put in my paperwork to get a service dog, though I got my first cane a couple weeks before then. I was still shocked over the whole thing, and some part of me still believed that we’d find the right medication and it’d make me a lot better, even if it didn’t cure me.

I was in such a state of shock at that point that I was perhaps too honest about my illness with people who weren’t prepared for it. I didn’t try to hide that I had severe, constant, unrelenting pain, and that some days I was too damn sick from pain and fatigue to make it to class. That bit me on the ass pretty badly.

I think it took me about 6 months to accept that we could only do so much about the pain. That was when I got put on pain meds 24/7, including an opioid and something to deal with neural pain. I improved a fair amount at that point, and got back most of the use of my hands that I had lost. Even though I accepted that pain relief was only going to do so much, I still hoped for the magic pill cure. It was that first year when I gathered several of my specialists – the neurologist who was investigating what turned out to be a side effect of one of the first medications I’d been put on, the urologist, the gastroenterologist, the pain specialist.

The months after I first got sick, a lot of people I knew started suggesting it was Ehlers-Danlos syndrome. I didn’t realize I was as hypermobile as I am, and I don’t have the classic stretchy skin, so I shrugged it off and decided it couldn’t be right pretty quickly. Silly me, huh?

But it kept being brought up, and as more and more of my body had trouble – my bladder, my GI, so on – I looked at EDS again that summer and I thought ‘it’s possible’. By the middle of the fall semester, I finally decided that it was likely enough to look into a specialist. My GP had a similar reaction to mine at first, though she thought that the distinctive facial features associated with vascular EDS (the rarest of the 3 most common varieties) was seen in all people with EDS, and I definitely don’t have it. One of the features is thin lips, and I have rather full lips, so it wasn’t a match. She also didn’t realize that I have grey scelerae (that’s the whites of the eyes – in people with EDS, they are often blue or grey, because our scelerae are thinner).

That summer, my neurologist wrote for a permanent placard on the same visit that he told me whatever I had was not neurological, and he was sorry he couldn’t help me.

I got sent to a rheumatologist somewhere in that first year, and he couldn’t tell me much except that my troubles weren’t auto-immune. The neurologist and rheumatologist both not being able to help was both frustrating and hopeful – it said I might still have something a pill could cure, instead of something progressive.

I think I stopped believing there would be a miracle cure only when I was finally diagnosed in the winter of my second year of law school. I can’t tell you how crushing it was to have that be true. On the one hand, I was relieved because it meant I didn’t have something that was progressive to the point of killing you, and some of the possibilities we went through were pretty damn scary. On the other hand, I was disappointed because I knew that bracing and improving my pain medications were all we could do – I’d always have this, no matter what medications I took.

I suppose I started identifying as having a chronic illness very early on. Within a couple of weeks of the start of the chronic pain and fatigue, I figured that having this twice (remember, I had an episode of joint pain and fatigue my freshman year of college) probably meant that there was something bigger going on. I don’t think I started identifying as having a disability until about a year after I’d say I developed that disability. I wasn’t certain it was permanent until after I went a couple hundred miles to see a doctor who was well-known for contributions to the understanding of EDS. (Incidentally, I saw someone in my own city first who was supposedly an expert in Marfan’s and EDS, who misdiagnosed me and treated me badly.)

If you were to ask me to give a single adjective to describe becoming disabled, I’d say it’s frustrating. Yeah, there’s a lot of grief involved too, but to me, the single greatest emotion I have towards my disability is frustration. Frustration that I’m injured again. Frustration that I’m missing things due to pain and fatigue. Frustration that I can’t do things I used to. Frustration with each new piece of adaptive equipment I need to get along. Frustration with the weight caused by my illness and the medications that treat it. Frustration with society. Frustration with doctors and the medical system. Frustration with my health insurance. A ton of frustration, which seems to be more like a landslide in that it keeps growing as it goes along. A few stones at the start; a cataclysmic crushing weight of rock and earth at the bottom.

For me, a great deal of what is necessary to be happy as a person with a disability was learning to deal with that frustration. It still hits me now and again, but not like it did that first two years. It really did take me two years and developing a better support network to get to the point where I didn’t want to throw things most days.* It took me that long to find a place where I really could deal with my disability and the process of becoming disabled without being upset all the time, instead of just putting up a front. It probably didn’t help matters any that while my physical disability was first happening, my bipolarism wasn’t managed well.

Two years. Sometimes it seems like a blink of an eye; other times, it seems like a lifetime. It certainly seemed like a lifetime when I was living with it! At the end, while I’m still not thrilled about the level of disability I’m living with, I’ve made my peace with it. I no longer feel as isolated, as frustrated, or frankly as disabled. I’ve figured out how to make things work, and I’ve accepted that mobility aids (including my furry four-legged one) are part of my life. I do still wish that I was able to do more than I currently can, and I do still miss things like dancing and swordfighting, but I’ve filled my life with other things.

I don’t know if there is some sort of ‘average’ time it takes to get to a good baseline of emotions when you get a disability. I’ve known people who have had disabilities for decades and are still bitter about it; I also know people who seem to have this infinite serenity about it from the start. I do know that unless you’re one of those rare people who really is utterly adaptable and completely unflappable, you have to learn good coping techniques and you have to learn to live a different life than the one you led before. Those are both hard things to do, and damn near impossible to do without support. I think support – friends and family, medical, mental health, and services – are absolutely vital to learning to live a good life with a disability. I think that a lot of people who get stranded somewhere harmful to themselves or others don’t have the kind of support to make the transition, or they lost the support they needed to stay in a good life. Either way could make you pretty bitter and angry, I’d guess.

*Don’t worry, I threw empty pill bottles at my open closet, so the bottles hit my clothing and dropped to the closet floor. Except for the one that bounced off the edge of my closet and hit me in the forehead. Yeah, that was embarassing.

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So, I am officially okay with my service dog organization. I have to attend open house on Sept 11 and a class on Sept 17, and I re-certify on Sept 21.

I would have been happier waiting until I no longer was using the scooter before my re-cert. I hope between now and then to have my scooter’s wiring checked, because it keeps doing this jerky, slow-and-surge thing with its speed. It’s hard on me, and it makes it look like Hudson isn’t pacing me well because he has trouble staying right next to me when the scooter does its annoying ‘thing’.

All the same, it is a relief to know that I will be okay and I don’t have to worry about it anymore.

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Welcome to the August edition of the Disability Blog Carnival! I’m very happy to be your host.

When I asked for submissions, I decided to make the theme ‘distance’. I think distance is an interesting concept because we use the same word to mean so many different things – the space between ideas, the space between here and there, the space between you and me, the space between us and them, the space passage of time creates, the difference between where we started and where we have gotten to, the space between understanding and not. Intentional spaces, ideological spaces, physical spaces, metaphorical spaces. It’s a word that I think sometimes encompasses much of the disability experience, because there always seem to be more distances we have to deal with.

Counter-Indicated: A visual representation of the distance between the various pieces of medical equipment I am supposed to be using; the buff colored wrist-brace with thumb immobilization can't be worn with the blue forearm crutches. The top of the left crutch and the bottom of the right crutch lean diagonally across the white canvas, trapping between them the buff wrist brace. Created by Kali, copyright 8/22/2010

Without any further ado, I bring you this month’s blog carnival.

From Maggie World, written by the ablebodied mother of a young woman with multiple disabilities, we have A Game of Inches. This post is about how physical distance, physical space can be incredibly important to creating and maintaining accessibility for someone in a wheelchair, using an accessible vehicle.

From Spaz Girl, a teenage girl with spasticity, we have The Importance of Crip Community. This post is about the importance of having a community out here, in ‘our’ space, where we are distanced from ‘their’ space. She talks about the way crip community helps us invision our futures, which are hard to see when all the role models we’re presented with are able-bodied.

From Lene at The Seated View, we have Bridging the Distance, a post about the way sometimes, people who do not have disabilities can expand their understanding and ‘get’ how important accessibility is through events in their own lives.

From Astrid at Astrid’s Journal, we have Then and Now: On Changing Abilities, and Why those Don’t Make Me Fake, a post about how changing over time does not necessarily mean increasing or decreasing disability. Sometimes, all it takes is a change in circumstances to create an apparent distance.

From Hand To Mouth, we have Assistive Technology and Accessing the Digital Divide. This post discusses the distance between how far accessible technology has come and how much technology most people actually have access to. How frustrating it is, to know that we have the ability to allow people to access the world in previously unprecedented ways, and yet we’re held back because the necessary tools aren’t spread widely enough. As the blog said, the bridge is so dear, so tenuous, as to be almost frightening to us on this side of the divide. How easily we could lose that access that we had to work so hard to obtain. And yet – and yet, does the chasm have to be so wide?

From Rightfully Deviant, we have The Community Imperative, a post about finding a crip community where you aren’t at a distance, a place where you and your disability just…fit. Just make sense. Don’t need to be justified.

From Amanda at Ballastexistenz, we have Distance Underthought, a unique post – a painting and an explanation of it that talk about distance and lack of distance where there is…understanding…among those of us on the other side. I don’t want to talk too much about this, because I very much liked her description of the ideas in the painting.

From Yasmin at Damn the Muse, we have So What Do You Have…, a post about a great interaction between her and her new neighbor/friend, that shows that we don’t have to be at a distance if people don’t treat us that way.

From In My Eyes: Life with Cerebral Palsy, we have From the Other Side of the Window, a post questioning film and life interpretations of kids with disabilities.

Finally, my own post. The Space Between is about the way the media creates greater distance between people with disabilities and people without disabilities using a handful of tropes that we see over and over and over. How much this distance could be closed, if the media would just let us tell our own stories in our own words!

Well, that’s it for this edition of the Disability Blog Carnival. I hope you’ve all enjoyed the ride! I sure have.

~Kali

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Get ready everyone, the Disability Blog Carnival for August will go up tomorrow!

Expect to see it sometime after noon in much of the US, on Sunday, August 21st.

~Kali

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There is this space that exists between most people with disabilities and most people who don’t have them.

The trouble is, that space is mostly filled by media talk about disabilities, which create some very standard lines about what it means to have a disability. I think there are 6 basic lines of approach: person ‘overcomes’ their disability and triumphs; disability is So! Tragic!; caretakers for people with disability carry unbearable burdens and are angels if they carry it successfully; person with a disability is an angel (especially if they are mentally handicapped) nor “put here by god to teach a lesson”; person with a disability is cured (by hard work, by modern medicine, by non-Western medicine, by prayer, by meditation, by being positive, you take your pick); and people who do not have disabilities can imagine what it’s like to live with one.

But let’s break these down, shall we?

1) Person overcomes their disability.
Er, no. See, the thing is, a disability isn’t like a traditional horse handicap. Horse handicaps worked like this: the horse who was supposed to be the better racer had weights or distance added to try to even up the race. The goal of a handicapper was to get the horses to finish as close to the same time as possible. A photo-finish (that is, where the finish is so close a picture of the horses crossing the line must be examined to figure out who finished first) is the triumph of a handicapper.

We’re not like that. We aren’t carrying around some mystical extra weight to slow us down, nor are we running longer distances (most of the time – don’t get me started on how much longer accessible routes tend to be!). We’re just different. We do things differently. I don’t open jars with my bare hands, I have a tool that grips them and makes them easier to turn. I still get the jar open, just using a different method. I know of a number of people in wheelchairs, or people with dwarfism, who have lowered counters in their kitchen so that it’s accessible to them. I take the elevator instead of the stairs. Right now, with the newest knee injury, I get around on an electric scooter instead of on my feet. It’s just different.

If you want a handicap like the traditional horse handicaps, try looking at lack of accessibility! The number of stores you can’t get into on wheels, the ramps that are canted too steeply to be used safely, the way tilted sidewalks make it harder to move, the way handicapped accessible routes mean around the side or the back instead of up the front, the fact that we have to do better than our able-bodied counterparts to get the same jobs, and so on, then yeah, maybe we’re dealing with a handicap. It isn’t our bodies that make them, though. I’m not triumphing over my disability; if I’m triumphing over anything, it’s society’s views of me.

2) Disability is So! Tragic!
Let me say right off the top that while disability isn’t tragic, the process of becoming disabled (say, via a car accident) can be. It would probably be more accurate to say that it’s traumatic, though. It’s really damn hard to adjust to a new disability. That doesn’t make disability a tragic thing, though; that makes accepting new limitations and figuring out ways to deal with them hard, and it makes dealing with societal views of people with disability really tough to swallow.

I’m not saying that it isn’t hard to adjust. It is. Just like it’s hard to adjust to living in a new country when you haven’t learned the language and culture first. You have to figure out how the locals do things, you grieve for things you had in your old country but don’t have now, you have to figure out how to express yourself in different ways, and you have to break down all your old ideas about what that country and its people are like. So it is with disability.

If disability can be seen to be tragic at all, it is because of the way people with disabilities are treated. Social Security for disabled folks keeps them below the poverty line. Places aren’t accessible. Abuse happens to us at a higher rate because we’re seen as less-than. It’s harder to get, and keep a job because employers also think of us as lesser beings. There isn’t the kind of community support we need. Too many people think of accomodating people with disabilities as giving us special treatment. The Americans with Disabilities Act passed 20 years ago, but we are still not really equal in most people’s eyes.

The most tragic thing about disability is that because disability is viewed as tragic, murdering us is often excused or given a ridiculously light sentence.

3) Caretakers carry unbearable burdens and are angels if they do it successfully
Arrite, let me say first off – some 20% of people have a disability in my country; more in countries where there are things like landmines or severe environmental pollution that cause higher rates of disability. If taking care of us were some unbearable burden, then I think most of us would be homeless or suffering from terrible, chronic abuse – far more than actually are. Yeah, we have a higher rate of both of those than folks who are able-bodied, but it’s still only a fraction of the disabled community.

Now, I’m not saying that caretaking is easy. Even my easy-going, big-hearted boyfriend gets fed up with it occasionally – usually when it’s midnight and time for yet another late-night hospital trip. It is a lot of work, and the world as a whole does not give enough recognition for the hours our families and loved ones and employees put in. My aide isn’t paid even half what I think she’s worth. I think that family caretakers deserve a ton more respite care and financial support than they recieve. I think good caretakers are great people and should be respected for that…but I don’t think they’re angels. I think they have good and bad days just like the rest of us. I think they make choices and sacrifices like the rest of us, though those sacrifices are usually larger than the average. I think they’re human beings with a tough row to hoe.

Part of the reason I’m against calling them angels is that it says that only very few people can do it. And that’s not true! I think most people could be caretakers if adequate support were available. It also says that people who are caretakers don’t need support, which I think is even more untrue. People who are caretakers have more stress than the average person, so they need more support – family and friends who are willing to help and to talk, governmental support for respite care and aide hours, financial support to ease the cost of helping us.

The other part of the reason is that saying we’re an unbearable burden excuses abuse. People with disabilities are abused at a sickening rate. Why? Well, I think it’s a combination of a few things. First off, most abusers pick targets that are not as highly valued as they are – people with disabilities, children, women, and people who are trans*. Second, most caretakers do not have adequate support, especially in terms of respite care. Third, as a society, we have said that it’s excusable to abuse and kill people with disabilities because their lives are tragic and they’re huge burdens. It excuses teachers who abuse disabled pupils because “they aren’t trained to handle them”. It excuses aides and institution workers because “the work is just so stressful”. It excuses family caretakers because “they have to work so hard to take care of them”. It excuses murder because our lives are seen as having less value, especially if the person is mentally handicapped or has a terminal condition.

4) Person with a disability (especially mental handicaps) is an ‘angel’ or “put here by god to teach a lesson”

Wow. Yeah, that one just blows me away. The fact that someone is disabled doesn’t make them an angel, any more than a caretaker is an angel! I’ve witnessed plenty of kids with disabilities throwing tantrums. I know that living treated as a lesser being is enough to make yours truely rage pretty good sometimes. We aren’t angels any more than the next person. We don’t have some divinely kind and understanding souls, we’re just like you, but with a disability. And being of less than average intelligence doesn’t grant a serene disposition.

Now, for people who call all kids angels, I suppose I can sort of understand why they’d want to call kids with disabilities angels, but please consider that it may be construed that you think people with disabilities are angles and might just piss someone off!

The ‘here to teach a lesson’ bit is one that particularly riles me. I’m not your freakin’ lesson! I’m a person. Hey, once again, just like you, but with a disability. And perhaps a few less prejudices, if you see me as a lesson! If you treat me like a lesson, you’ll get one you deserve – that I have a temper! I am a person. I’m here for the same reason you are, whether you believe we’re all shaped in a creator’s image or whether you believe we’re just the most successful genetic mutation. People with disabilities aren’t put here by some greater being to teach patience, kindness, equality, or any other virtue you might associate with us. (though let me tell you, a great many of us would like to teach TRUE equality. In my experience, people who speak of someone with a disability demonstrating equality tend to mean that all souls are equal, not about equality in treatment, in housing, in funding, in hiring, or in any of the ways that people with disabilities are discriminated against) We are just people. We just exist. Same as you. Same as everyone else.

5) Person with disability is cured
Here’s a cold hard fact for you: most people with disabilities cannot be cured.

Hard work won’t cure a disability. It may teach you to cope with the disability in such a way that the disability is not obvious or is no longer difficult to deal with, but it doesn’t get rid of the actual disability. Even though I learned to spell by rote, I’m still mildly dyslexic. My spelling is far better than average because of the way I had to learn it, but I scramble things like phone numbers on a regular basis.

Contrary to the Zoloft commercial where the sad, depressed head bouncing around turns into a happy smiley head, medication doesn’t fix everything. It can help, but most of us don’t get fixed by a pill. And when you get to physical disabilities, the rate of ‘fixed by a pill’ or a surgery doesn’t get much higher. There aren’t many disabilities that can be fixed by surgery.

I believe in the power of healing energy and prayer and whatnot, but I don’t think they can make the body fix things that are impossible to fix. I think that if anything, they make the possible happen more effectively. The same for meditation and thinking positively. None of that will fix my genetic cartiledge defects, and to be frank I’ll get quite snippy if people start trying to push their prayer cure.

6) People without disabilities can imagine what it’s like to have a disability.

Um, no. No and no and no. First off, you can’t imagine what it’s like to have my disability because you can’t wrap your head around how pervasively it affects my life. It comes down to everything, even the way I hold my hands to type and brush my teeth, how I lay to sleep at night, what clothing I choose to wear. Secondly, you can’t imagine how I’ve adapted to it. When I busted my knee the first time, I hit the point where I could carry a tray and use crutches the first time within a couple of weeks. Humans are amazingly adaptable creatures – it is the greatest strength of our species. If I could learn something that required that much concentration and coordination that quickly, how much do you think we adapt to years of living with our disabilities?

If you sit in a wheelchair and push yourself around a bit, you’ll understand how much muscle you have to develop to easily push yourself around all day…but what most people will ‘learn’ is how hard it is to push yourself when you don’t have that muscle! (in all likelihood, they’ll have you sitting in the heavy hospital style wheelchairs that are really meant to be pushed by someone else instead of the low-backed, low sided, lightweight chairs that most people with disabilities use) Borrowing my forearm crutches may make your arms sore, but it only takes a couple of weeks on them to get used to it. Trying to wander around with blinding goggles or a blindfold on doesn’t teach you what it’s like for a blind person to navigate, it teaches you that you don’t know how to. I really, really hate those ‘disability’ demos that pop people into different kinds of adaptive equipment. All people really learn is that they don’t know how to use the equipment we live with, but they THINK they learn how hard disability is. And then they pity us. Yet more space that puts between us and them.

The space between people with disabilities and people without could easily be narrowed by real disability narratives – our stories, told by ourselves. How much better we might be understood with a few less ‘wheelchair bound’ narratives and a few more ‘wheelchair using’ stories! I wish that people could see Paralympic athletes as what they are – people who have trained and are at the peak of fitness and skill at their sport, instead of ‘poor crippled folks who have overcome their disabilities’. We overcome nothing but societal prejudice, and work WITH our bodies! One of the first things we have to learn is to stop fighting our disability and adapt to it. But your average journalist has never had to learn that, and doesn’t have the training to listen to us explain it. As long as our stories are told by people without disabilities, people who can’t really understand us, this gap will continue to be, and we – people with disabilities – will suffer for it.

(updated to add, whoops, I forgot point 4)

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Just One More Day!

Hey folks, just to give you a heads up – tomorrow is the last day to send me posts for the August edition of the Disability Blog Carnival.

Please comment and link or email me at brilliantmindbrokenbody at gmail dot com.

~Kali

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