Working on Chronic Illness Time

One of the frustrating things about having a chronic illness is that you often have to work on its time.  You can have all kinds of plans, only to have your illness decide it feels like kicking your butt worse than normal.  Or maybe you plan for things to be bad, only to have a good day.  Maybe you just THINK it’s a good day, so you over-extend yourself until you’re near collapsing far from home.  Or maybe you just have a bipolar meltdown and are having trouble getting out of bed because your sense of impending doom is so damn intense.

I’ve been dealing with a lot of stuff healthwise lately.  The prescription they put me on for the pain and swelling in my joints seems to disagree violently with my GI system.  My pain specialist told me to go off it for a week, which helped enormously with my GI but wrought havoc on my joints.  They’re now almost as puffy as they were when I first went to the rheumatologist.

It’s frustrating, because I’ve made commitments.  I’m working on a research project that is intended to become an article written with a friend.  It’s a big deal – law students rarely get journal articles published, so if I do, it’s a major feather in my cap.  It’s also on a subject I care a great deal about: privacy and the internet.  You see, I think we should be able to talk freely and read freely, without someone able to track every website I visit and every comment I make easily.  I think it’s a good thing if it’s hard for the government to just jump in.  If it’s important, the government has the resources to break most privacy systems that exist, they just want to have things set up so that it’s easier to do.  And if you make something easy to break, the government is not likely to be the only entity to take advantage of that.

Anyhow, I’m getting sidetracked.  So I have this project that is important to me both career-wise and in principle.  I have deadlines and people relying on me to do work, and frankly sometimes I can’t.  Sometimes my body is so broken that doing anything but lying in bed reading a novel I’ve already read a dozen times is impossible.  When things are bad, even a new novel – no matter how straightforward it is – is more than I can wrap my brain around.

When you work on chronic illness time, you have to have some give in your schedule.  Maybe you’re lucky and have a flex-time schedule that allows you to get your work done whenever you are in the condition to do it, whether it’s 9 AM or 2 PM or midnight.  Maybe you work few enough hours that you can rest enough between them to keep going.  All told, though, it’s hard.  It’s hard and it’s frustrating, and it makes you look like an unreliable flake to others.  It makes you feel like an unreliable flake.

For me, that inability to know how well I can keep my commitments is the hardest part.  It makes me question whether it’s worth it to finish law school, because I don’t know if anyone will be willing to hire me afterwards, or if I’ll be able to work for myself.  It is the one hint of bitterness for me in my fiance’s success at getting his job – the knowledge that such a job may never exist for me.  And it is only a hint; the vast majority of me is deeply happy for him.  And, er, also pleased that there will be money to buy shiny things, like fancy things to put in my hair and nice fiber for my spinning wheel and a silk robe to wrap myself in.  Okay, so I’m a hedonist and a glutton, but these are the small things that make me happy.  (If you’re curious about the nice hairthings, I’m going to be buying a hair fork from these guys – http://www.etsy.com/shop/grahtoestudio?ref=fp_ph_2&src=prvshp.  I am thinking about getting something custom – they had this lovely fork with a crescent moon at the top, and I think I want one of those in maple, which is pale and lovely.  Also, if you’re thinking about buying something from them, please tell me, because they have a referral program whereby I can get credit towards pretties.)

Ye gods this is a wandering entry.  I should know better than to write tired, which I am doing.  My block had this godawful block party today that involved a DJ playing music at rock-concert volume.  In the house with the air conditioner running and good earplugs in, I could still make out every word of every song.  It has left me with a bit of a headache, I’ll admit.  Also, I just went back on the medication I mentioned earlier, so it hasn’t had time to do me much good, which means that everything HURTS.

So this is what working on Chronic Illness time looks like: this is the time when your chronic illness makes it hard for you to write coherently and cohesively.  I know what I’ve written can be read, and the meaning is reasonably clear, but it rambles and forks like a bramblebush.  And why?  Because it’s hard to edit when you’re like this, and it’s harder still to make yourself stay on topic.  Obviously my mind in this state is pretty useless for researching for an article, much less trying to write anything!

So goodnight, everyone.  Hopefully, tomorrow will be a more brainful day.  Also, look for the announcement for the next Assistance Dog Blog Carnival here sometime before Friday.

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On becoming disabled…

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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Disability Blog Carnival!

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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The Space Between

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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A moment of typical EDS…

We got home from our vacation yesterday.  It really was a nice trip, and my parents and the boyfriend’s parents met for the first time.  They liked each other.

So we get home, and we’re both kind of tired.  The boyfriend brings in all the stuff, including my new-to-me scooter.  My parents brought it out; it belonged to my grandmother, who passed away a little over a year ago.  It’s good to have a mobility device that will allow me to get around more, though this is a bigger, heavier scooter than I would have bought myself.  That’s kind of a mixed blessing – on the one hand, it’s more powerful and can do more (like managing hills and going over grass); on the other hand, I can’t lift the thing myself – we’re considering getting a carrier we can hook up to my car’s tow hitch so that I’ll be able to have it when the boyfriend isn’t around.  Money we don’t really have, but on the other hand, the scooter will be at its most useful when the boyfriend isn’t there to help me.

Anyhow, all of this is kind of besides the point, because I was going to give you a typical moment of having EDS.  It was around 9:30 last night, and the boyfriend and I were both downstairs.  I was relaxing with a novel, he was theoretically surfing the net with his phone but dozing off a fair amount of the time.  I got up to go to the bathroom, and as I started up the stairs…POP!

Yeah, that hurt.  My left knee…something was definitely wrong.  I’d gotten about 5 steps up, so I was kind of stuck.  I called the boyfriend over, and he helped me down the stairs, my arm over his shoulder and him one step below me.  We managed to partially dislocate my left shoulder as I stepped off the last stair, because of the difference between his height and mine.  I needed to get down to the ground to assess the damage to my knee, because the place it popped in wasn’t where it usually does, but I couldn’t bend my left knee without pain or support any weight.  The boyfriend had to catch me under the arms from behind and lay me down, which isn’t as easy as it sounds.

Once I was on the ground, I could definitely tell it wasn’t the usual, and that’s a bad thing.  ‘The usual’, with my knee, is my kneecap partially or completely dislocating, which is painful sure but easy to fix.  This, though…the pop was centered over my patellar ligament.  And oh yeah…I still needed to go to the bathroom.  I tried to sit down and just scoot backwards up the stairs, but our stairs are relatively steep, narrow stairs, which is really hard to get up that way, especially when you don’t have great upper body strength.  In the end, I had the boyfriend fetch my crutches, which at least let me manage my weight in a way that is easier on my upper body.

I’ll tell you, it was one of those times when I was willing to accept the humiliating possibility that I might need a commode on the 1st floor.  I haven’t needed to use a non-toilet ‘potty’ since I was a little kid being dragged along on road trips by my parents when I was old enough not to be in diapers and but young enough not to be able to give much warning before I needed to pee.  (Their solution to that, as I recall, was to use a collapsible kiddie commode type thing)  Well, I haven’t with the exception of the one time with the really, really bad flu that landed me in the ER and almost had me kept inpatient for a few days.  The idea of needing one in my house?  Not a pleasant one.  I doubt the boyfriend would like the idea much either, as he’d be one of the people who had to empty it, as I only have an attendant for 2 hours a day.

I got in with my doctor’s office today (though not my usual doctor) and there’s concern that I may have partially torn either my patellar ligament or my lateral collateral ligament (that’s the one on the outside of the knee, and a typical tackled-from-the-side football injury).  I get an MRI done Friday (yay, let’s put the mildly claustrophobic girl in a tube again!) and we’re really hoping that either I haven’t torn anything and just inflammed stuff or it’s a small enough tear not to need a repair.  Surgery is a definite possibility on my horizon.

I can’t go to work because I can’t get to my office in my scooter (you can only get to about 1/2 of the offices on my floor without going up 3 stairs and down 3 stairs).  It’s just as well, since I should be icing down my knee, and shouldn’t be walking back and forth between the room I work in and the room my supervisor is in, and it’d be mighty inconvenient to keep getting on the scooter, going 20 ft, turning around, driving back 20 ft, and then hopping off the scooter and back to my desk.  Because I’m technically a volunteer intern, I don’t think the ADA requires them to figure out a way to make it work for me.

Yup.  That’s a typical EDS moment.  Most of the time, we look just fine and maybe even are fine, but every now and again, BOOM, it gets you.

It’s also leading to some not-so-good service dog partnership moments.  Hudson isn’t used to me walking with crutches, and moving at a much slower pace than usual, so he’s not pacing me well, which means he gets ahead of me and crosses in front of me and tangles both of us up in his leash.  The really bad part of this is that we’re supposed to be getting re-certified as a team this week, and what they measure is how well you work as a team – and right now, we aren’t!

This, I think, is the real pain in the butt about EDS – the unpredictability of injuries, the severity of random injuries, and the way it interferes in your life.  It happens, you can’t avoid it, you can’t plan for it, and man does it interrupt things you DO have planned!

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It’s easier not to

Obviously this title could apply to a lot of things, but I’ve been stewing over a particular set of things it’s easier not to do/be.

It’s easier not to be political.  See, once you start digging into ideas of feminism and anti-ableism and the like, you start seeing sexism and ableism and racism and sizeism and heterosexism and…fill-in-the-blankism everywhere.  Ism ism ism ism ism!  And when you see them, they sting more.  They make you angry more.  They frustrate you more.  They make you wonder about other people more.  They make you wonder if you can actually make a difference.

To give you a very basic idea, you see them in TV.  My boyfriend and I have recently started watching the show Jeremiah though our netflix subscription.  Jeremiah is a post-apocalyptic show, set 15 years after a virus that killed everyone in the world above the age of puberty.  We’ve watched a grand total of 2 episodes at this point.  So far, I’ve been seeing race fail and sex fail.  The race fail: 1) the hero is white, the sidekick (who is also the more comic of the two) is black; 2) when they appear to pair off in the first episode, the white hero pairs off with a white woman while the black sidekick pairs off with a woman who appears to be multiracial; 3) the white hero is noble and self-sacrificing and has some higher goals; the black side-kick is clever but rather cowardly and selfish; 4)  black characters are supposed to appear ‘ghetto’ but not white characters; 5) people of color have to be saved from white supremacist group by white hero (who is helped by black sidekick and other white dude, but the ideas on how to rescue them belong to white hero); 6) kidnapped woman has to be saved by white hero.  The gender fail: 1) both hero and sidekick are male; 2) women-as-commodity; 3) women walking around half naked while men are fully clothed; 4) female sex-workers, but no male sex-workers; 5) (as mentioned in race fail) the woman who gets kidnapped and is going to be gang-raped by her kidnappers gets saved by hero; 6) the only surviving carrier of the virus from 15 years ago is female – she is trapped in an airtight room, a lab, and kept alive in the hopes that someone will learn to make vaccines from her blood and save the rest of the world if the virus comes again – so we have in this instance alone: woman must be taken care of (by a male character, of course), woman as passive vessel for the virus, woman as potential cure for the world, woman who lives only because she might save others.

I’m not even touching the ideas of ableism there, because we don’t meet people with disabilities in the world of Jeremiah thus far.  Which is, of course, its own ableism – either the idea that people with disabilities couldn’t adapt to living in the post-apocalyptic world of Jeremiah OR the erasure of people with disabilities even though they make up circa 20% of the population.

It’s harder to just relax and enjoy things when you keep getting bitten by all these little fails and problems.  When you keep noticing that advertising, shows, the conversation of people around you, is loaded with -isms.  It’s hard to not have reservations about things, because there are so many little twingy things that keep poking out at you.

Life was a lot simpler when I wasn’t quite so political, when I wasn’t quite so aware.  I don’t want to shut off that awareness, because I know it’s important for me to see these things and call them out.  I just occasionally wish for the days when I didn’t see all of this.  It gets downright depressing when you realize that nothing, NOTHING is without -isms and fail.

…even you.  That may be the hardest part.  When you notice patterns in your own thinking, in your own speech, that are full of -isms.  That you have to continually be aware and be willing to change if you are trying to fully commit to the idea of a world without discrimination.  It’s hard.  It’s REALLY hard.  When you notice that the language that you’ve used since you were a child is problematic, you can’t just say ‘okay, so I’ll stop’.  It keeps creeping in.  And so you call the driver lame, or a spaz, or stupid.  And perhaps the worst part is, sometimes you don’t even catch that you’ve said it.

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From many small things, a bad day is made.

Today is a devil-is-in-the-details sort of day.  You know what I mean, right?  Where theoretically it all looks fine, but when you get down to it, all kinds of little things go wrong.

I woke up 15 minutes before I needed to leave for physical therapy.  That’s normally plenty, since I just toss on a pair of shorts and a tank top, cram some breakfast into me and the dog, dress the dog, and head out the door.

It wasn’t enough today.

First off, I woke up with my neck and shoulder so cramped that my shoulder was almost touching my ear.  It took me a good 5 minutes just to that worked out enough that I could manage to drive.  It hurt like hell, and I was caught between needing to get moving pronto and needing to be gentle enough that my physical therapist could still work on the muscles in my neck.

What do you do with 10 minutes to get ready?  You mutter at yourself, throw your clothing on, stumble down the stairs, dress the dog, and then realize that your keys are lost.  Crap.  5 minutes later, I discovered that the couch had eaten my keys, but not in the usual place it eats things.  I promised the dog I’d feed him when we got to physical therapy, crammed a poptart in my mouth, and scrambled out the door.

I would have been on time.

Well, if not for the workers repainting the road.  It took 45 minutes to move 1/2 mile.  The freeway was at a stand-still 1/4 of a mile before the exit, and I was baffled.  This just doesn’t happen, especially not for such a length of time.  Maybe there was a car accident, I thought.  I eventually got up to the end of the off-ramp, where they were doing the painting, and I swore a blue streak.  If they had put signs up, I could have avoided this exit and gotten off at the one before and saved myself 30 minutes at least.

So, 45 minutes late for physical therapy, I get parked, explain the electronic meter system to a guy who is staring at the pay station looking bewildered and intimidated, pay for my time and get my stub to put on my windshield, and then realize that I left the dog’s breakfast at home.  Shit!  Double shit!  Agh, my poor long-suffering Hudson.

My physical therapist is a wonderful, wonderful man.  He’s a great PT, for starters, but he’s also incredibly accomodating.  He managed to squeeze me in around another patient, letting one of his assistants supervise me doing the exercises on machines that I needed but doing all the body work himself.  That man has amazing hands.  A-freaking-mazing hands.  He manages to tease out tension with almost no pain when I or the boyfriend would put me into tears to get the same result.  We talk while he works, and among other things I brought up the fact that I miss roller coasters and was wondering if he thought it’d be safe for me to ride on them, if I wore a soft neck brace.  We talked about what kind of rides I should probably avoid (sharp lateral motions, or rougher rides like wooden coasters), but he agreed that it would probably be safe for me to ride the kind of roller coasters I like best, the big aggressive fast looping type.  Aw yeah.  Pity for the boyfriend that he’s not crazy about those, aheh.

Right.  So now it’s 2:00 when I’m finishing up instead of 1:00, because of that damn traffic jam and because it takes a little longer to be seen when you’re being squeezed in.  I feel really, really bad at this point, because the dog should have eaten at 11:30 when I got up.

So we need to head home.  On a Friday of what promises to be a scorcher of a summer weekend, I’m NOT about to risk the freeway after noon.  I drive past the onramp and feel justified by the traffic I see building up.

The only trouble is that using streets rather than freeways takes a whole lot longer.  50 minutes instead of (ideally) 25.  So by the time I get home, I’ve been driving for a total of 2 hours and 15 minutes, and I don’t take driving well.  It stiffens up my back and makes me soooore.  And oh man am I exhausted, ’cause I slept badly with my boyfriend out of town.

I get home, undress the dog, finally feed him (poor pooch!), let him out to pee, and damn it I’m awake again so I can’t even go back to sleep.

And this is the point where I find out that shit is going to hit the fan this weekend.

When my boyfriend took this out of town job for the next 3 weeks, he was told it would be Monday-Friday, that he didn’t need to be there on the weekend, and hey, the pay is great.  Well, it really is 3 1/2 weeks, because he had to go in on Thursday of this week and be there today, and for chunks of Saturday and Sunday.

Saturday and Sunday when he’s supposed to be driving me to service dog classes.  Classes I can’t miss or I risk losing Hudson.  You see, we are required to attend 6 classes during our first year.  My first year with Hudson was rough as hell healthwise – there were the months when I was having maybe-they-were-seizures, there were multiple ER trips that interfered with us getting to classes, there was my schedule being less than ideal making us miss classes, and oh yeah, there were migraines.  So I missed almost all of the opportunities to take classes.  And thus, here I am, just over a month from when we must have our classes done by, with only 2/6 done.  So I somehow have to make it to 4 classes.  And I’m dealing with POTS and aggressive summer heat.  And the service dog classes take place an hour from here.  And with the exception of the classes on the weekends, they last all damn day.

There are 2 classes that will take place in my city.  One would involve driving to 45 minutes west of my city during the early part of morning rush hour, getting on a train, riding said train for an hour, walking around the city center for 3 hours, and then riding the train an hour back out so I could get in my car and drive back into the city into the teeth of evening rush hour.  The other would involve being out at the zoo all day – a place that has virtually no air conditioning, when I’ve been fainting in the heat.  My doctor nixed the second one, and frankly doing the first would put me at serious risk of getting into a car accident from fatigue.

So the boyfriend is going to drive about 5 1/2 hours tomorrow to get me to a terrible baseball game 45 minutes from where we live because on Sunday, his required chunk of time is going to coincide with my class.  So on Sunday, I MUST be able to drive an hour there, be there for 2 hours, and then drive an hour back.  The sum of this is that I need him to drive me tomorrow so that I hopefully will be able to make the drive on Sunday.

And all of this is happening while I can’t get a signal on my phone in the house.  Texts are unreliable, and calls are unheard of.  I eventually figured out a way to fix it, but this was after hours of worry and frustration, and about 2 days of not being able to get or make calls.

I called my doctor to ask about possibly adding a medication to help with the POTS, since the gatorade was only helping under certain situations and not in others.  Well, my blood work is back, and the news isn’t good.  My thyroid is apparently very low – low enough that it could be causing some of my dizziness, fatigue, and near-fainting.  I need to start taking calcium supplements, which may be adding to the problem and could be behind the mysterious muscle cramping I’ve had lately.  And the real humdinger of the whole thing: my blood sugar is high again, and has been high every time it’s been tested in the last year.  Which means I’m probably pre-diabetic.

This is worse news than it appears at first.  For those of you who know diabetes, you see that and think that I need to ease up on the carbs and the sugar, add some exercise, and all will be well.  Here’s the thing: my diet is already pretty restricted from my IBS.  A number of the things you eat to make a more diabetic-friendly diet are things that make my IBS miserably worse: whole grains, veggies, that sort of thing.  And frankly, I’ve needed my easy to digest carbs and sugars.  On bad days or when my reflux is really bad, that’s about all that I can get into me.  On bad days, the fatigue and pain means that I eat what is ready to eat, and ready to eat foods are HORRIBLE in terms of carbs and sugar.  And exercise?  When I’ve been dizzy and near fainting just from existing?  Who ARE you kidding?!  I do my strength and flexibility exercises that I need to prevent more injuries and pain, and that’s all I can manage- no cardio, no way.

I could have dealt with one or two of these things without it making for a bad day, but in sum, they represent a really frustrating, worrying, irritating, and downright crappy day.

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Balancing Career and Disability (part 2 – accomodations)

Sorry it’s been so long between these Career and Disability posts. Live has been a bit out of control lately, and I’m afraid my blog has suffered a bit because of that.

So. I talked a bit about what a person has to do to balance career and disability in my first post, which you can find here.

One of the things I talked about in that post was accomodations. Since I know a lot of my readers aren’t disabled, or don’t have official accomodations, I thought I’d walk you through what the formal, legal accomodation process looks like. I’m saying ‘company’ here, but this process tends to hold true for companies and for schools, though schools are required to do a LOT more accomodating than companies are as a general rule. There are exceptions.* For the record, I’m dealing with what happens under the Americans with Disabilities Act in the United States. I’m nowhere near familiar enough with other accomodation systems to write about them, though I understand the kind of push-and-pull negotiations that I’m describing happen under them, too.

So let’s start with the basics. What’s an accomodation? An accomodation is a limitation on what you can be expected to do in either the work or school environment. It is a restructuring in some way that is supposed to make the place accessible to you in an equivalent way as it is for everyone else. Accomodations can be modifications to the structure, location, or the job itself.

As soon as you know you need an accomodation at your job – hopefully before you start work there, but ‘as soon as possible’ is important here – you go to your doctor and you get a set of restrictions written up. The restrictions say exactly what you can and can’t do – for example, for quite a while I had one that said I couldn’t lift more than 35 lbs overhead and more than 50 lbs overall, to protect my bad shoulder. I also had a restriction on how long I was to be placed in a kneeling or crouching position, to protect my knees – I think no more than 15 minutes without 5 minutes of being out of that position. In order to get an official accomodation, my experience is that these restrictions have to be very specific – it can’t just say ‘no heavy lifting’, it needs to say ‘no lifting over X weight’. They also need to say what the company needs to do to accomodate your need, for example ‘requires parking within 100 yards of her office, due to difficulty walking’. The more specific the note from the doctor is, the clearer a guideline it presents to the company you’re getting an accomodation from – an absolutely vital thing. If your note isn’t specific enough, you’ll find yourself bouncing back and forth between the company/school and your doctor. “does this cover it?” “No” “Dr, can you write a note that says X?”

Now, getting this note is not always a walk in the park. Some doctors don’t like writing for accomodations, for a variety of reasons including internalized ableism. I’ve had doctors who refuse to write notes for anything but other doctors and treatment, which made me want to pull my hair out! I’ve also had doctors who were great and worked with me and faxed several versions of the note to try to get specific enough to satisfy my employer (which was REALLY frustrating for both of us). Getting your doctor to understand why you need an accomodation can be frustrating. My current accomodations letter actually came from my neurologist, back when we thought I might have a neurological disorder in november or so of ’07 – which is to say, the doctor had no idea why I had the problems I had, nor did he have any way to verify that I needed the accomodations I outlined, but he was willing to work with me because he thought it was very important that I maintain as normal a life as possible, which meant staying in school. Fortunately, by then, I knew what accomodations letters should look like, so it only took 1 version to get what I needed carried out.

Anyhow, back to the process. So now you have your doctor’s note specifying what you’re not supposed to do.

You take it to the company. Now, the company does NOT have an absolute requirement to give all necessary accomodations. (on the other hand, a school recieving federal funds has a much stronger mandate to accomodate!) The company has to give necessary accomodations when the person can still perform the core duties of the job. Many a fight over accomodations revolve around what ‘core duties’ entail, and more than a few court cases have been fought over that very point. If a company wants to fight you on giving the accomodations, this is frequently one of the ways they will do it – by saying that if they give you the requested accomodation, you will not be fulfilling one of the necessary and important parts of the job.

In theory, the question of hiring and accomodating are different processes. Your need for accomodation is not supposed to be part of the hiring analysis; they are not supposed to consider whether they will need to bend their policies and practices to work with you. However, a great many companies use the principle I just talked about to un-hire people who their hiring process approved. I’ve come very close to having it happen to me. The company cannot revoke its job offer unless they come to the conclusion that you cannot fulfill one of the central requirements of the job, but as I already said, that’s quite a fuzzy area that is often a battleground.

The company may propose alternative accomodations that they believe will equally make the workplace accessible. Your guess is as good as mine as to whether these are actually going to be worthwhile propositions – I’ve heard it going both ways. Generally, these alternatives are a matter of monetary cost. Usually, they’re what in the law we call a ‘good faith’ effort – the company is well-intentioned and looking for ways to try to make things work well for both the company and the individual requesting an accomodation. Sometimes, though, they’re used as a way to make work impossible but try to shield the company from liability – “look, we accomodated zir**, but ze still was not able to perform the job adequately.”

So now, we’ve navigated getting the note, taking it to the company, and theoretically getting an accomodation.

Next there’s actually applying the accomodation, and this is another area where there are struggles. Your accomodation may say you have a flexible schedule, but your immediate supervisor may decide ze wants to see you 6 out of the 8 hours ze’s in the office, which really does a number on the flexibility of your schedule. Especially on something like that, if the accomodation is vague, you’re in for a fight to get it applied in the way you interpreted it. The more precise you can get the language of the accomodation (and for heaven’s sake, get it in writing!), the safer you are from this kind of problem, because then you can bring out your accomodation letter and show it to your boss. Mind you, this is definitely NOT always the case. I’ve worked places where accomodations were regarded as absolute, and if my boss asked me to do something contrary to my accomodation, all I had to say was, “I’m not allowed to lift that much” and I’d get moved to doing something else. Most people, once they have an accomodation letter, will not encounter their bosses trying to…whittle away at their accomodations. However, there are an unfortunate number of people who believe in the ableist notion that accomodations are favoritism, and thus you may get harassed by your boss or your coworkers over the very changes in your environment that make working possible for you. It’s not fair, but frankly the world is often not fair to those of us with disabilities.

The long and short of what I’m trying to say is that getting accomodations is often a big negotiated struggle. It’s not always that way; I know people who have informal, verbal agreements with their supervisors that have worked out well for them (this is particularly true for short-term things, like broken legs and shoulder surgery). But here’s the thing: if your company fails to live up to the agreed upon accomodations, an accomodation that was put together through the process I just described and documented will stand up in court, and be clear on what it means. Verbal agreements do not protect you as well, in part because there is no record of what happened, so whoever you talked to can forget or misremember what was said. As with many other things this law student has said, here again, I have to emphasize…GET IT IN WRITING!

It’s not fair that it’s such a big process to get an accomodation. We shouldn’t have to work so hard to get our employers to work with us, and some are a lot better than this. I’m trying to show what a normal, average process looks like, though, and in my experience, it looks like this.

Out of the whole thing, I find myself very grateful for the cooperative, helpful doctors I’ve had, who have been willing to write for accomodations that have let me work, stay in school, and generally live the life I want. Having your doctor on your side is one of the biggest helps you can have in this process – the other one is having a company that really wants you and is thus willing to work with what you need.

* Specifically, I know that med schools and law schools have successfully survived challenges to their scheduling and attendence policies (respectively). I am not certain why medical schools have survived the challenge, though I suspect that they were able to make the case that the kind of run-around that you go through as a med student is tradition because it’s necessary to prepare you for being a resident. I know the law schools’ attendence policies have survived because it is a requirement set up by the American Bar Association, and ABA accreditation is very important in the legal world.

** I try to use gender-neutral pronouns when I remember, because these kinds of matters affect people of all gender identifications.

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Getting it right – Blogging Against Disableism Day

One of the ways I think we can fight ableism is to talk about people who get it right. People who treat us as human beings, particularly people who are able to work with or around our disabilities and not treat us as our cultural status quo demands they should. We talk a great deal about the way the world gets this wrong, about the way we are shunted aside, about the way people turn our actual physical impediments into societal disability, but we do not often talk about when things actually go RIGHT.

(which is not to say that the discussion of how things go wrong is unimportant or finished – I think both halves of this issue MUST be publically, unceasingly discussed or we will never see change.)

So how do people get it right? The most basic thing is that they remember our humanity and respect our autonomy. To give a very basic example of how respect of autonomy works, the fact that I cannot cut up the potatoes I want for dinner does not mean that I cannot have them done the way I want. If a person who is aiding me to prepare my dinner asks me how I want the potatoes done, and does them the way they ask, then I still have autonomy because I was able to make decisions and direct outcomes. Autonomy is not about being able to do everything for yourself, it is about being able to direct your life and have things done to match your desires, whether or not you are personally doing them.

So who gets it right in my life?

The boyfriend.

The boyfriend and I have been together for over 2 years. He’s gotten used to the fact that if things need to be lifted, carried, or picked up, I generally can’t do it. That most of the responsibilities in the kitchen will fall to his shoulders, because my hands aren’t up to it. He even carries my purse when we’re out and about without getting goofy about it the way some guys do.

He’s also learned the boundary between things I can sometimes do and things I really shouldn’t do. So he’ll ask me how near to our destination I need the car parked, because some days I can walk 4 blocks and some days I need to be dropped off at the door. He doesn’t ask if I want him to take the bag after I’ve made a purchase, because we both know I shouldn’t be carrying things. It’s a delicate balance, between helping too little and helping too much, and it requires a great deal of attention to maintain.

He does not take advantage of my disability. A great many of people with disabilities, especially women, find themselves abused by their caretakers and/or partners. Any time you have a power imbalance, there is a risk that someone will take advantage of it without regard for the harm they do. I think the boyfriend would be nauseated at the idea of ever taking advantage of me in any way, and for that particular aspect of his character I am very grateful. I know, as a woman with a fairly severe physical disability and an emotional disorder, that I could easily be abused and harmed by a significant other – and some of that has befallen me in the past. But with the boyfriend, I am safe because I am never less than a person, never less than he, in his mind.

My doctor.

My doctor never talks down to me. He remembers that while I am the patient, and much less knowledgable about medicine (not to mention unable to look at places like the inside of my own ears), it is my body he is treating. When there are treatment options, he tells me, and explains why he prefers one direction over another. He does not tell me ‘You Must Do X’, he tells me ‘I think we should do X.’

It may not seem like much, but it’s a world of difference to me. Especially with complex, chronic patients (like yours truely), doctors forget sometimes that they are our advisors and employees, not gods. It’s a level of respect for my right to have input into the decisions about my bodies that is unfortunately rare.

Additionally, I never feel as if I am an illness to him. I am a person, a person he remembers is a law student who loves crafting and art and has a plethora of hobbies. It does not matter whether I am seeing him for a new issue (like my ear infection) or a chronic issues (like my back), he listens well and considers how my many medical conditions could be interacting with the issue we’re discussing. He does not grow frustrated with me because of the way my body reacts, nor am I ever abused for not being able enough or healed enough after his intervention. To my doctor, I am a patient he helps to be healthier, not a lump of flesh in need of his fixes and treatments.

My Personal Care Assistant

My personal care assistant, Nikki, has been with me for 15 months now. The relationship between a personal care assistant and a client can be very difficult to navigate. In most cases, a personal care assistant is responsible for a lot of taking care of the home and the body of a person with disabilities. There are a great many landmines that show up in the relationship between a PCA and a client.

My PCA does things my way, even if she’d prefer to do them a different way. Yeah, she thinks it’s a little funny how obsessive I am about cross-contamination, but she’s respectful about it and keeps my kitchen safe and clean. She remembers how insistant I am about having my books organized by author and series, so that I can quickly find what I’m looking for. She doesn’t complain about the messes I end up making and not being able to clean up because of my disability. When approaching things she doesn’t know the answer to, like how I want things cut up for dinner or where a new item should go, she doesn’t just decide for herself and hang me with the consequences if I don’t like it – she asks me, and she does what I’ve directed.

She also does not treat me as a paycheck. I know that some PCAs get into this industry because they just need a job and someone to pay them. Nikki actually cares about me as a human being, and we joke about our significant others, the state of the world, our neighbors, and so on. She does not lie to me. She does not steal from me. She contacts me if she is going to be late or if she cannot come so that I can get someone else to take care of me. She does not refuse to do things I request that are part of her job (and actually, is willing to go pretty far outside of her actual job requirements if I ask for help). She does what I request, when I request it. She does not make me feel like a burden. She does not use her power over me to harm me in any way.

All this may seem like things you would assume to be true about someone in the service industry, but I can assure you that I have known of PCAs who violate all of these trusts and more. Me, well, I’ve been lucky, as Nikki and the boyfriend are the only people who have ever worked for me as PCAs, and both of them have the basic respect and decency to remember that I am a human being worthy of dignity and respect. I consider Nikki a friend as well as an employee, and I value her greatly.

To sum this up, there are a great many ways that we as people with disability are vulnerable to abuse. That vulnerability springs in part from our impairments themselves, but mostly from the societal view of us as lesser beings, in much the same way that a woman’s vulnerability springs both from being (on average) less physically strong than a man and from societal ranking of women as less than men. Part of fighting that abuse is talking about it, but another part is talking about relationships that are safe, that do not involve abuse. Healthy relationships. Relationships in which we are equals, in which we are people, in which we can trust.

And so, people of the world, whether you are people with disabilities or people who are ablebodied, I challenge you to think not only on living with ableism, but to think also of times and places where we are do not.

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Balancing career and disability (part 1)

Here’s one of those nasty secrets about having a disability that you don’t really understand until you royally screw it up: balancing a career and a disability is very, very hard.

It’s something I’ve struggled with personally, and something I’ve watched friends and acquaintances struggle with. Part of the trouble is that the world outside tends to have an all-or-nothing perspective on work: either you can or you can’t work full time, you can or you can’t ‘hack it’, you’re part of the workforce or you’re some bum on disability. It’s a pretty damn unflattering look at us, very ableist, and something that puts a great many people in the netherworld of not working and not being on disability.

Here’s the truth: a lot of us who are disabled can’t work a traditional, in the office, 40+ hour work-week. Some of us could do the hours no problem if we could work some portion of them from home. Some of us need some kind of accomodation, for example being able to lay down or recline comfortably, and then we’d be able to work those hours. Some of us can’t work that many hours. Some of us could work the hours if we had flex-time scheduling and could work when our bodies let us (doubly so if we had that flex-time scheduling from home).

Where does that put us? For many of us, it puts us out of work. Your average employer is deeply ableist and doesn’t believe that a person who needs accomodations for their disability will be able to contribute adequately. They don’t want to make accomodations for us, because they have this odd idea that if they change anything for me, they’ll have to change it for every Tom, Dick and Harry who ask for it. They want me to prove that I’m good enough, in a trial where I’ll be under scrutiny every minute and where my mistakes will be weighed more heavily than an able-bodied person’s. Perhaps hardest of all, often you have to ‘prove yourself’ before you can get your accomodation – unfair and illegal, but something we see distressingly often. Or at least, it’s illegal if you can get a doctor to say you need the accomodation – a whole other problem that I’ll address in a later edition.

Sometimes our accomodations are small. Having our hours scheduled in a particular manner. Not having work and training on the same day. Not being stationed in a smoking area. Written rather than verbal instructions. Space to do medication injections. A binder shoved under our feet to prevent low back strain.

Find me a law firm that will give me a recliner for my office chair, with a wireless mouse/keyboard combo and a screen that can be moved into position, and you’ll have one shocked Kali. You’ll also have a woman who can work. A woman with a damn good instinct for trial practice, according to a trial professor, and a heap of passion for the kind of work she wants to do. Yeah, I’ll still need some flex-time – it’s physically impossible for me to make it in to an office before 9:00 and that’s just how it is. But having that kind of chance…well, it’s something we don’t get very often.

Instead, we end up in positions like my friend B. Not long after B started working for her current employer, she was told that it wouldn’t be a problem that she needed to work from home sometimes, not to mention occasionally taking off for doctor’s visits, which she’d make up for later. The face her employer initially showed her was a disability friendly company that would work with her. Instead, B is finding that when she says she’s going to work from home, her boss harasses her. She catches hell about missing time at work, even though she takes home piles of work on the weekends. B is so run around and overworked that she is barely able to take care of herself, and she’s really running herself into the ground trying to keep up. Because of this non-disability-friendly treatment, she has had to quit for her health. Her boss justifies it by pointing out that they’re a small company and don’t have people to take up the slack, but the thing is that they’ve more or less broken promises to her. There’s some question about whether B could work fulltime even with accomodations; I won’t pretend like it’s just the way her office treats her. And the job is a more-than-fulltime job for an AB. The thing is this – she doesn’t really get a chance because her employer plays ball on paper but makes her life hard in reality.

It’s not always bad. Some employers really do work with us. My friend Miss Waxie, who works for a university, gets time off for her doctor’s appointments, and is allowed to borrow an office when she needs to inject her medications. She also has a boss who watches for fatigue and tells her to take off. Her co-workers give her written notes instead of verbal requests, because her memory requires it. (You can find Ms Waxie at http://www.acomiclifeindeed.wordpress.com)

Likewise, my friend M, who works in travel, has been able to negotiate work-arounds for her, though she had to prove herself first. Once she had ‘proven’ herself to her superiors, she was able to make sure she wasn’t scheduled for training and work on the same day. She keeps more at her desk than most of her co-workers, though she does get a little flack about needing to keep her desk clean. She does things in the way that is most efficient, even if it isn’t quite the same way policy or the rest of the office does it.

But negotiated arrangements aren’t always safe. G has asthma. She worked as a host in a restaurant at a resort. There were 2 positions for hosts inside the restaurant, and one just outside. The restaurant was non-smoking, but right outside of the restaurant was an open-air bar, where people did quite a bit of smoking. During the winter months, it was okay, because the prevailing winds blew the smoke away. But as it warmed up, the smoke got blown in, and G started having asthma attacks. She went to the manager, who said that G would no longer rotate to the outside posts, much to the annoyance of the other hosts. The other hosts harassed her in front of a supervisor, who did nothing about it and in fact thought they were justified in harassing her. A few months down the road, the other hosts hounded the manager into forcing her outside. G ended up having to quit the job. She probably could have fought the resort, but since the problem hinged on the behavior of a manager, she had really lost faith in her employer caring about her.

Here’s the other thing – it’s not always about our jobs working with us (or not), it’s also about us working with ourselves. My first year of law school, I was determined to go to school full time. I wanted to carry a full course load like everyone else, making no accomodation for myself! I did nothing but go to school and go home, eat and sleep. I was miserable, with a brand spanking new disability I hadn’t figured out yet and a load of classmates and professors who didn’t understand. I’d always carried a full or overload course load in my academic career, so I couldn’t admit at first that I could no longer do that. In the end, it took one professor failing me for missing too many classes and the dean of students kindly but firmly encouraging me to drop down to a part-time load to get me to see reason. And at that, it was a very traumatized, upset ‘seeing reason’. I don’t know what I would have done if they hadn’t stepped in; no, that’s not true, I know what I would have done – I would have kept driving myself into the ground harder and harder until I broke.

This entry is brought to you by something that happened recently – I made a good career choice, but a foolish health choice. I got a part-time job working for a judge this summer. I’ve worked for her in the past, so I know her office is pretty laid back. I also know I can tell her I’m working 3 days a week, and won’t be pushed past that. Now, for my physical and mental health, I know I should have taken the summer off. I’ve been plagued by severe migraines and wierd maybe-they-were-seizures. I’ve had dislocation problems, and probably need to get the majority of my braces replaced. I’ve been learning to live with a service dog, which is actually a lot of work (mentally and physically). Taking the time off would have been a much wiser choice. But for my career health, it’s much better that I not take the summer off. The legal world does not look kindly on summers where you neither take classes nor work. So…I work. For better or for worse. At least I know, up front, what I’m heading into.

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