Posts Tagged ‘accomodation’

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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Right, so my first sex and disability post was about how sex works with my physical disability. As I’m sure many of you are aware, I don’t just have physical disabilities, I have mental illness, too. I’m bipolar. Specifically, I have bipolar II. That means that I don’t have ‘true’ mania, I have hypomania. Hypomania tends to manifest as this kind of overwhelming exhuberance, intense goal orientation, less need for sleep, bit thin-skinned, and…pushy.

Now, bipolar and sex is kind of bewildering because the way bipolarism interacts with sex depends in part on where in the cycle you are.

When I’m on an even keel, which is where I spend most of my time, I like sex. I love my boyfriend. So we have a pretty normal sex-life, other than all the fun my physical disabilities bring into it.

When I’m hypomanic, I don’t just like sex, I need it. I crave it. I want sex badly enough to ignore physical pain to get it. I also tend to want more physically intense sex – kinkier, more forceful, so on. Between the frequency I want it and the intensity I want, I tend to end up very, very sore. Which, if I’m still manic, isn’t enough to stop me from wanting more – it just means that when we’re done, I’m going to wince. I’ve had it get bad enough that I want to curl up in a ball around my aching crotch and whimper. This, unfortunately, makes the boyfriend feel really bad even though it’s entirely my fault that I ended up that way. I theoretically know that it’ll cause pain, I just don’t care. Er, at least, I don’t care until we’re done and the pain hits.

If I’m depressed, my relationship with sex gets more complicated. On the one hand, it makes me feel good, and I’m in need of feeling good. It also makes me feel loved and closer to the boyfriend. On the other hand, I have this great inertia that makes me not want to do anything, much less something that takes as much effort as sex. In general, that means that I settle for being almost clingy with my need to be cuddled – cuddling takes a lot less work than sex, and it still makes me feel loved and it feels good, though not as good as sex. I suspect that depression is part of why I so often fall asleep curled up around my boyfriend. I can’t sleep that way – sleeping is something that must be done very carefully, on a thick memoryfoam topper, wrapped around a body pillow just so, with my pillow pushed and pulled into the right shape. If I sleep curled up around my boyfriend, I wake aaaaching.

The depression is even more complicated than that, though, because of the way it makes me feel about myself. It makes me feel ugly and fat (in a bad way, not the usual ‘yeah, I’m fat, so?’), and utterly undesirable. The fact that my boyfriend thinks I’m the most desirable woman on the planet doesn’t even make a dent when I’m feeling like this. The space between myself as a sex object and the way I see myself when I’m depressed is so incredibly vast that I don’t have words to describe it.

That’s not to say that our sex life is always at one of these two poles – I’m not always wanting more than my body can handle or none at all. Most of the time, I’m neither manic nor depressed, so if my body is behaving, things are…normal. We’re a twenty-something couple that love each other. (haha, not for long, the boyfriend turns 30 this month!)

The thing is, when you combine the physical issues with the mental ones, our sex life gets…complicated. It’s nothing we can’t deal with, but that’s the thing – you have to deal with it. It’s something a non-disabled couple doesn’t have to worry about. Like everything else in my life, sex means figuring out how to do things in a way that works with me, not against me. Life is definitely more complicated when you’ve got a disability, and I’ve got a whole mess of them!

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Now, this is a post that a couple of people have been asking me to write since the day I started this blog.  How does sex work when you’ve got a body as unpredictable and undependable as mine?

Well, I have to start by saying, sex only works with an understanding partner.  A partner who wasn’t willing to listen to me could do me a great deal of harm during sex – dislocated joints, torn tissue, sprains and strains, so on.  Shoot, even with a guy who listens well, there’s a risk of doing all of that, but at least a guy who listens well will stop when I get injured and try to help me put myself back together!  An understanding partner also hopefully doesn’t get frustrated when we start and have to stop because of yet another injury.

Right, so we have a partner who’s going to listen to what I say and be willing to accomodate himself to my needs.

Next, the set-up.  That starts with the bed.  No, seriously, the bed matters.  A bed that’s too soft means that the only position possible is missionary, because if I put a hand or knee or…whatever…down on the bed, the pressure gets localized too much.  If I put a hand down, it means that my wrist gets bent back because the heel of the hand sinks down while the fingers don’t.  A bed that’s too hard means that no matter what position we try, I’m going to be hurting afterwards, but particularly bad would be anything that has me on my knees, because my kneecaps can’t take much pressure.  Next come the pillows.  I need a lot of support to be able to have sex.  If it’s missionary position, I need pillows under my knees so that my hips aren’t flung all the way open (or the risk of sublux goes WAY up).  If it’s doggy style, it’s got to be modified, with pillows under my hips and me reclining down on them, because otherwise it’s too much pressure on my shoulders and my hips.

Which kind of leads on to position.  Missionary is the easiest on me, because it means my back is fully supported and my weight is distributed on a large area (as opposed to, for example, woman-on-top, where the weight is all on your knees).  Next I suppose would be a modified doggy style, with pillows under my hips and me resting my weight on them, instead of all on my hands and knees.  Woman-on-top hasn’t been possible for a while, because it is really easy to sublux a hip in that position.  Spooning depends very much on the proportions of myself and my partner – I was only able to get things to line up properly with one ex.  Man sitting up and me sitting down facing him (usually done in a chair, but can be done in bed) presents similar problems to woman-on-top with the added problem (if on the bed) of getting into the position – it’s hard to get my legs to move that way!  (which is a shame – that used to be one of my favorite positions)  In that position, it’s mostly my own enthusiasm that is the danger.

The other thing that comes into play with EDS is fragile tissue.  When your tissues are fragile and tear or bruise easily, it becomes that much more important to have a lot of foreplay and a good lube.  If my partner and I get a bit too eager and hurry things along, I’ll be sore for days because I’ll bruise inside.  I can’t use spermicidal lubes because they increase the likelihood of microtears.  For me, that means irritation and burning and itching and tenderness for days afterwards.  The first time that happened, I completely freaked out and was convinced I had just gotten an STD!  It took a rather panicked trip to the doctor to ease my mind.  The issue with spermicides is frustrating because so many condoms are packaged with spermicides already applied to them.  That’s part of why I always buy my own condoms.  Personally, I don’t do well with most glycerine lubes.  They get sticky as they dry, which can mean small tears in the tissue.  They don’t last long enough, which again can mean small tears.  I tend to use silicone lubes, which are much better on that count.  Oil-based lubes are also okay, but you have to be careful with them because they are not compatible with condoms.  Speaking of condoms, I’m not especially compatible with condoms.  They cause more friction, which with my delicate tissues can mean injuries, especially if my partner has a lot of endurance in the sack.  It’s very, very frustrating when you’re in a relationship where you’ve just started having sex and want it all the time but can only actually have sex once every 3-4 days.

Now, one of the particular issues I have is the combination of my preferred kinks with EDS.  I’m a relatively vanilla girl, which is probably for the best with my body being what it is!  There are really only 3 strong kinks I have, and only 2 really get hazardous with EDS.  The easiest to deal with is being blindfolded – it makes injuries from accidental collision with a partner a bit more likely, but it’s really not all that dangerous.  I also like being tied up/cuffed/pinned down.  This one causes all kinds of problems.  Before I learned not to fight the ties, there was an evening where I dislocated both shoulders.  I’ve also put out my wrists more times than I can count.  Part of what I like about being tied up is that sense of not being able to get away!  Not being able to fight them without injuring myself takes that down a notch, because I always have to be mindful of my joints when I’m struggling.  I definitely can’t ‘fight back’ as hard as I’d like to.  The third issue is that I like ‘sharp’ pain.  That is, I enjoy some whips and being spanked.  It’s definitely more a mood thing than the others.  The main thing that makes this one difficult is the level of control my partner has to have.  It is difficult to trigger the sharp snap of pain on the skin without bruising the flesh beneath, especially with someone who bruises as easily as I do.  And I HATE being bruised.  In the BDSM world, when you talk about implements, you talk about ‘sting’ and ‘thud’.  ‘Sting’ is exactly what I like – that sharp sensation on the skin.  ‘Thud’ tends to refer to harder impacts against the flesh, often leading to some bruising.  Personally, I prefer something with almost no thud, all sting, but used gently enough not to break the skin.  If things are done to my liking, within an hour or two there should be no marks.  Less if it’s done in the shower, typically.  The boyfriend, being a gentle soul, was rather appalled by the idea of striking me when it was first brought up, but he agreed to try it and found that while he doesn’t enjoy the act of making contact like that, he does very much like the way I respond.  I think he feels much the same about blindfolding and tying me up – it’s not that he enjoys being in control like that, it’s that he enjoys how much pleasure I get from not being in control.  It’s a set-up that may sound rather odd, but it works for us.  I get my fill of my kinks, and he gets off on how much I enjoy said kinks.  (On a side note – I am very, very grateful that my kinks are relatively tame.  I think if I was into more pain, or more submission, or more exotic kinks, the boyfriend would be so turned off by the idea that he wouldn’t even want to try it.  What I like is close enough to vanilla that he was at least willing to give it a go!)

Um, I think I covered everything there.  Please do feel free to ask questions, though I’ll admit I may not answer them if they make me…uncomfortable.

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There are a great many topics we consider taboo in the workplace – religion, politics, sex (usually) – and disability definitely has to go on that list.

Because I have POTS, I’m at a risk for fainting or needing to do things that look odd like suddenly sitting or lying on the floor.  I thought it was only fair to warn my coworkers.

First I warned the legal secretary in our office, since I know her best.  She’s a lovely person, she really is, but it was clear she was uncomfortable.  I mentioned that there’s a risk of me fainting in the heat, and she started asking if it might be blood pressure issues, that sort of thing, but in the sort of tone that acknowledged that this was Not Spoken Of At Work.  I told her that on the rare occasions when I faint, I generally come around within a minute or two, and not to worry or call for help unless I was down for more than five minutes.  I managed to ease her worries by pointing out that I haven’t had a full faint in 2 years, and that the most likely thing to happen was that I’d get woozy and dizzy, and sit back down hard in my chair when I tried to stand.  She eventually got comfortable enough to make a joke about keeping the air conditioner blasting in the room where I work.

Today, I told my supervisor, the judge’s clerk.  I told him that it was possible that I’d have to do something odd like sit or lay down on the floor, and he gave me this look like I’d just dropped a frog in his lap.  I told him that it was a blood pressure problem and it got worse in the heat, so the current weather was very hard on me.  He continued looking like there was a frog squirming on his lap, and said, “Er, okay.”

Now, I was warning my coworkers so they wouldn’t panic or freak out if I did happen to faint or collapse, or sit on the floor for no apparent reason.  I hadn’t expected them to be so very uncomfortable with discussing my disability, in ways it might affect them, but boy were they!

Because we treat disability as a very taboo issue, when a person chooses to speak about it, we tend to react as if they had just stripped down to their underwear and started dancing around in the middle of the office.  While disability is indeed a very personal issue, and one that I think shouldn’t be broached without a firm relationship with the person who has the disability, it’s disconcerting to realize how much other people don’t want to deal with it.

There are reasons, of course.  If you talk to a healthy looking young person about their disability, you have to admit that there is theoretically nothing to stop anyone – including you – from becoming disabled.  You have to acknowledge that disability makes their abilities different, and many people have to struggle over the idea of whether that changes their value as people.  You are given an introduction to a different perspective on the world, especially if the person with a disability chooses to talk about some of the ways the society’s treatment of us sucks.  It’s a pretty big paradigm shift, especially if you can wrap your head around the idea that being human, and thus of value, is not dependant on having certain abilities – it is an innate quality in all of us.

But part of getting to that point is learning to listen to people talking about disability without getting the creeping feeling that somehow talking and listening to/about disability is wrong.  You have to get over the idea that disability should be hidden, shameful, embarassing, and degrading.

It’s a lot to ask a person to do.  Any time you push someone to take a closer look at their privileges and their prejudices, it’s a very uncomfortable journey for them, because they have to admit they HAVE privileges and prejudices.  And let’s face it, none of us wants to admit that we have accepted and shaped our world view around bigoted notions.

So I can understand why my coworkers are so uncomfortable when I mention that my disability might have certain affects on me while I’m in the office.  But that doesn’t make it any more comfortable for me.

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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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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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I know I mostly talk about my physical illnesses/disabilities, but they aren’t the only ones I deal with. I am bipolar type II, though I flirt with type I when under pressure. I also have a bit of OCD – enough for it to be mildly disruptive and entirely annoying to people around me. I have PTSD (relatively mild) and occasionally have panic attacks. I’m also a pathological planner/worrier.

Now, the OCD is for the most part pretty managable and it springs from things that are originally reasonable. For example, because of the fibromyalgia and sensitive skin, I’m extremely sensitive to folds, seams, tags, fabric softener, quality of fabric, and so on. However, this turns into an obsession with the sheets being pulled so that there are no wrinkles. A desire to have my clothing folded JUST SO. Disliking having shoes or socks on. Extreme particularism about how the laundry is done. The list goes on and on. Fortunately, my boyfriend is an exceptionally tolerant, patient person, and he rarely gets ruffled by this…twitch…of mine. I think the fact that he has an office that I never even look at, and thus a place he can do whatever he wants, probably helps with the balance of things.

Day to day, the OCD is a nuisance but not really hard to work with. It just kind of…is. It dictates a lot about the details of how things are done, but of all the things about me that require coping skills, it’s a relatively mild one (except the occasional night where I keep having to check that the doors are locked…those are very rough on my joints as I go up and down the stairs again and again and again). Yeah, once in a while the boyfriend and I end up snapping at each other over it, but on the whole, it doesn’t change our lives much.

I would not be surprised if my need to plan things and figure out what happens IF (fill in the blank) are OCD behaviors. It’s definitely compulsive, and something I am absolutely incapable of stopping. I can sometimes…manage…it, but usually the best option is to give in, sit down and do the planning/worrying/projecting, get best case and wrost case scenarios, and try to estimate likelihood of the various outcomes. Then, I can finally get on with life again. Knowing what will happen in the worst case really helps me maintain sanity and let go a little of this worry. Did I mention that I don’t really like change, and tend to react to it poorly initially? I think that falls under this, too, because it’s harder for me to plot the potential future outcomes when I have some new variable to deal with. There is little that troubles me as much as financial/job insecurity.

Bipolarism is another matter altogether. Part of the trouble with it is the vigilance needed. I (and to a lesser extent, the boyfriend) have to watch for hints of mania and depression. Am I sleeping less than usual? More? Do I end up talking faster and getting excited about seemingly insignificant things? Am I…grey, with no strong feelings about anything? (sorry, it’s a state that’s hard to describe).

And then there’s when it hits. Both upswings and downswings are dangerous to my relationships. In upswings, I am easily angered and prone to snapping and fighting. I have boundless enthusiasm and am less than pleasant when others don’t go along with it. I’m thin skinned and easily hurt. There’s a lurking mild paranoia that everyone is talking about me behind my back and secretly can’t stand me (which has only been aggrivated by periods in my life where that has been mostly true). In downswings, I have such a deep inertia that it is almost impossible to get me moving, physically or emotionally. Physically, I am tired and want to sleep a lot, and I don’t really want to get out of bed. I don’t care about eating, which means I either forget to eat or eat far too much of things I find tempting. I also eat a lot of convenience food, because preparing something more wholesome is just too much work. I worry deeply about the future, and question the futility of continuing with law school constantly. I often go incommunicado, speaking only in class or when spoken to directly. I don’t sign on instant messenger or call people, and I often retreat into books. When I’m depressed, it’s incredibly hard to manage basic self-care, so things like showering tend to get farther apart than I would like, and my physical disabilities make this worse.

A lot of literature and some people talk about sliding ‘down’ into depression. For me, none of the psych issues I have feel like sliding ‘down’ or ‘up’ so much as they feel like a shift…sideways. A paradigm shift, a fundamental change in the relationship between me and the universe. Sometimes, as with a bipolar depression cycle, it’s a subtle, slow shift that can be hard to spot until I’m really far out and start getting a bit irrational. Other times, like panic attacks, it is as if the world SNAPS sideways, violently and suddenly, and the change is painful and frightening. My perspective is so altered that my former perspective is incomprehensible, or worse yet it feels like my former perspective is completely, utterly wrong.

With those more sudden shifts, I cannot actually tell that what I feel and sense is not rational processing. I am so completely in thrall to my mental state that reality does not have a bearing on how I feel. To give an example, if I end up in a car during a panic attack (which is a REALLY BAD IDEA), I am usually convinced that everyone on the road could potentially kill me at any moment. They might crash into me or pull out a gun on me or god only knows what, but any one of them could harm me. Now, my rational self knows that this is not the case. I drive defensively and am very aware of where cars are around me, so that I can change my position relative to them if there is a sudden accident or something similar, but I am not normally afraid of them. A panic attack takes rational caution and turns it into unthinking, unprocessed fear. The best way of dealing with a panic attack that I have discovered is to lock myself into my house, and then lock myself into my bedroom, and take the panic attack medication. Being in an otherwise empty room in an otherwise empty house is about the only thing that can assist the medication in bringing me down out of that terrified state.

You have to understand, when you are dealing with mental illness of any sort, part of what you are dealing with is fundamentally irrational thought. ‘Everyone thinks I am stupid and ugly and annoying’ is not rational. After all, I know that I have friends and that the boyfriend thinks I am incredibly sexy. But the depression-colored lenses make it much harder, if not impossible, to see that. That’s how depression gets you. You aren’t just sad or down in the dumps, you’re irrational. That’s how depressed suicides happen. You believe something like, ‘I hurt the people around me so much and so often that they will be happier if I no longer exist to hurt them.’ In a depressed state, you can honestly believe that the hurt your death will cause is less than the hurt you will cause by existing. Anyone who has true friends and loved ones can tell you that this is emphatically not so! But in a depressed state, the trouble you cause by existing is often magnified so dramatically in your mind that you cannot believe that your death could possibly cause more.

Likewise, in a depressed state, your present pain can be dramatically magnified, to the point where you cannot believe that it is worth continuing.

Suicide is not a selfish act. It is an act of great pain and desperation, and sometimes the person trying to kill his- or herself actually believes they are doing an altruistic thing by removing the pain they cause their loved ones. Suicide is an act of irrational views and skewed thought. It is the product of a mental state that is fundamentally unhealthy.

So I guess that brings us to the question of what you DO about mental illness.

If you are very privileged and very lucky, you find a good therapist and a good psychiatrist or doctor. That involves a lot, though – it involves having the financial resources to get ‘help’. It often involves a lot of phone calls and searching and trying out new people, which is incredibly difficult when you’re starting from that slide sideways. It involves recognizing that you actually need help, which a great many people never do. It involves an element of luck – finding the right drug and the right doctor and the right therapist is really hard.

For the sake of argument, let’s say you have the privileges to be able to access appropriate treatment.

First, you have to find a doctor and/or shrink who has openings for new patients.
If you’re lucky, their personality and approach to therapy will be a match for you. I’ve only had a good match with about 1/3 of the therapists I have seen over my lifetime, with a more-or-less adequate match with another 1/3, leaving 1/3 who were absolutely abysmal and actually harmful to my wellbeing.

Next, you get to start the drug merry-go-round. We don’t know exactly why or how psychoactive drugs work, so we can’t predict with any accuracy how an individual will react to them. For any individual, some drugs will make him/her better, some will make him/her worse, and some will either cause other problems of equal weight or just not work. A drug may make someone better, but not better ENOUGH. Even drugs that work may eventually cease to be effective. We don’t know why, we only know that it happens. Personally, the worst depression I’ve ever had was made deeper by a mood stabilizer that didn’t work for me. I’ve also had a prescription make me sleep 18-20 hours a day. I’ve had one kick me out of a depression and straight into mania. I’ve had a drug that worked for circa 6 years abruptly cease to work. It is a journey of great potential dangers and great potential rewards. You can’t just skip off to your doctors and get some pills and be all better – not unless you are unbelievably, deeply lucky.

Now, even if you have insurance that allows you to do all of this, most companies will make you fight for it. Argue to keep your therapy covered. Struggle to get the prescription that works covered and keep it covered. Fight to get enough visits to do you any good. And heaven help you if you need to be hospitalized, because many insurance plans do not cover mental health hospitalizations.

A big part of what makes mental health issues so hard to deal with is the prejudice and misunderstanding. In dealing with my particular disabilities, I have to accept that there are times that I am not particularly sane. However, not being particularly sane doesn’t mean I grab a kitchen knife and start whacking people up. It’s far more likely to mean that I go curl up in bed and only get out when I MUST go to the bathroom or eat. Being mentally ill doesn’t make me a danger. I’m not hazardous to other people, and frankly most of the time I’m not even hazardous to myself. I’m not some ticking time bomb. I’m just…a person who has greater ups and downs than average, and I am sometimes ruled for very short periods of time by my irrational fears or my irrational needs for cleanliness in the house. I’m sure that can make being close to me difficult at times, but I shouldn’t be treated like some kind of harmful, dangerous freak.

Forgive me if this piece is long and rambling. I don’t talk about mental health all that often, and this was kind of triggered by reading a very good piece written by my friend here – http://naamah-darling.livejournal.com/437140.html.

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