Well, at least there’s news, at last?

Most of you who read my blog have done so for quite some time, and I’m sure you’ve noticed that in the past couple years, I’ve been much more quiet than in the past. I’ve been dealing with pain and inflammation and mental fog and all kinds of fun new symptoms while desperately trying to finish law school. It’s been a rough two and a half years, since the ‘new’ symptoms started.

For a while, my doctor and I thought it might be Lyme Disease. I responded positively to the right antibiotics, and very swiftly. We did several courses, and things improved a bit each time, then got worse again. Despite multiple blood tests, the only things that ever showed up were markers of increased inflammation.

I got frustrated with the status quo this summer, and asked to be sent to the rheumatologist again. If it was Lyme Disease, we had treated it pretty aggressively, and yet I saw no improvement. Besides that, I started having symptoms that are not as much associated with Lyme Disease. For example, I have psoriasis on my scalp, which has been there for most of a year, though it was only diagnosed this summer – I just kept forgetting to ask about it after the dandruff treatment did nothing to help.

Well, we have a general answer now. I probably never had Lyme Disease, but instead have had an auto-immune disease at sub-clinical levels. Basically, that means that my immune system has been attacking me, but not in a way that showed up in blood tests. I got the first positive auto-immune test – an anti-nuclear antibody or ANA test – about two months ago. About a month ago, whatever is going on kicked into high gear – my hands puffed up so that there were days I couldn’t even hold a fork, my feet were bad enough that some days I couldn’t walk, and boy has it been awful. The rheumatologist gave me a steroid to bring down the swelling, and then a week later had to increase the dose because the inflammation rebounded. My hands are now back to about where they were before this latest flare, though I’m still on the steroid so they’d definitely be worse without that. I’d like to eat the whole world and drink a lake. I also have a new found sympathy for menopausal women who complain about hot flashes. I was pretty dismissive before (internally! I’d never say such a thing to someone complaining about them!), but now I’m waking up every hour or two at night because I’ve sweated so much that the sheets are plastered to me and I’m so miserably hot from the waist up – and that’s with the apartment turned down cooler. It took me a week or so to figure out how to more or less balance things; until then, I was freezing from about mid-thigh down and frying on at least my head and often all the way down to my hips. On a good night, it’s only my head that gets hot, so I put a blanket over my body and turn the air down cold and then I only wake up a couple of times. On a bad night, I’m alternating between frying and freezing, and it’s making me groggy during the day.

At this point, there are definitely forerunners in the list of conditions that I might have. Psoriatric arthritis, rheumatoid arthritis, Sjogren’s Disease, and Mast Cell Activation Disorder/Disease are the current hottest suspects, as I understand things, but frankly none of the auto-immune diseases are entirely outside of possibilities. MCAD in particular has been observed to happen at higher frequencies among people who have EDS, so I suppose that may be the most likely, though it’s much harder to test for than the others. The second panel of more specific blood tests is due back any day, so hopefully I’ll have an answer soon. Unfortunately, the answer may well be that whatever I have, while it has been identified as auto-immune, can’t be identified more specifically via blood test. I pray that with an answer will come a more direct treatment. While the steroid is helping, and while steroids are often used in bad flares of rheumatological disorders, they are treating a symptom (inflammation) instead of dealing with the immune system itself. (Technically, MCAD seems to be classified as a hematological disorder rather than a rheumatological disorder, so I may need to be sent off to a whole different specialist, and people who treat MCAD are harder to find than people who treat what are more or less bog standard rheumatological disorders.)

I’m still feeling emotionally blitzed. On the one hand, there is a chance – an admittedly very small chance, but a chance all the same – that the past 7 years of health issues may all be linked to this, and thus may all markedly improve given effective treatment – I might get some semblance of the old Kali back, and the old Kali’s LIFE back. On the other hand, this has been going on for at least 2 1/2 years, and on some level I’m very angry about how long it’s taken and how little my doctors have been able to do to help me. Part of me feels like someone should have figured this out long before now – if the drugs to treat auto-immune disorders were not quite so powerful, I would have pushed for a trial of one long before now, because at least it would clearly eliminate auto-immune conditions, which can run at levels a blood test cannot detect for years, and may very well have done just that in me. I’m worried that the blood tests will be inconclusive, which means the possibility of less pleasant tests like biopsies to look for Sjogren’s. And I’m tired. I’m tired of it being one new thing after the next, tired of being sick, tired of being sickER, tired of the progression, tired of having to watch new symptoms blossom and often be present for long periods before anyone does anything effective about them. I’m frustrated with the whole medical industry, which I know is not completely fair to particularly my GP, who is a very caring individual who has invested a lot of time in learning to treat a patient as complex as I.

Hopefully, I’ll have another update for you all soon with an answer, and then we’ll get to start the treatment merry-go-round. Most medications for auto-immune disorders come with heavy side effects – oh, certainly, nothing to compare to the damage and pain of letting the condition run unchecked, but unpleasant all the same. I’m not looking forward to that part of a potential diagnosis.

And I’ve got to manage to hold things together through December. This is my last semester of law school, and at the end of this I’ll finally have enough units to graduate in May. Finally. It will have taken me twice as long as the average student, but finally I’ll be there. Then…well, I guess I try to open a law firm, which is its own terrifying adventure – new attorneys almost always join other firms, for good reason, and I probably won’t even have the money to hire a paralegal to help make sure things get done right. But that’s the next chapter, right? And hey, if my health evens out…maybe I can find a small firm that is willing to take on someone whose law school career doesn’t look all that great, so that I don’t have to figure out every step of this alone.

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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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Falling to pieces

The last three and a half years have seen a continuous downward spiral of my health.  It’s been hard, watching bits and pieces of function just fall away.  I’ve always been competitive and driven, so watching this happen has made me want to scream.

This has been the first semester where I think I may need to completely withdraw for health reasons.  I started the semester with a sinus infection that just wouldn’t go away.  Three courses of antibiotics knocked it out, but then a viral infection settled in, and it took forever to clear out.  That was just the start of things.  Then I suddenly started having tons of pain in my left arm and hand, with my fingers spasming and dropping things.  At the same time, my dysautonomia symptoms started flaring worse.

My doctor tells me that the symptoms in my hand and arm are a pinched nerve in my neck.  They’re hoping that it’ll clear up with physical therapy, heat and ice.  It’s better now than it was before, but I still have times when I can’t type, when I can’t write.  It stinks.  And it HURTS.  My shoulder, my arm, my hand…they all hurt, sometimes stabbing, sometimes electrical, sometimes pins-and-needles so bad that I have to shake my arm because I can’t stand it.

And the dysautonomia…well.  I collapsed on Monday.  I collapsed again on Thursday, on the way to class.  I missed work on Friday, because I’d collapsed twice in a week.

I’ve missed so much school, so much of my clinical, that I probably need to take a medical withdrawal this semester.  I’m failing everyone.  I’m scared, because my dysautonomia has gone so badly awry and because I worry about the pinched nerve.  I’m afraid I won’t be given a chance to finish my degree.  And I am tired.  I am so, so, SO tired of all of this.

So that’s why it’s been quiet around here, and I’m sorry about that.  I’ve missed out on things I very much wanted to be part of, and I’ve missed talking about things that were worthwhile conversations, and I’m hoping that someday that will change.  I’m also afraid of what will have to happen in my life for that to change.

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Disability services – hit or miss

I feel like after my last post about the struggle to get a class moved to a different room, I needed to talk about how my law school has handled my disability as a whole.

Now, one of the interesting things I have to point out here when talking about how my law school handles my disability is that my law school is semi-autonomous from the greater university.  It creates an…interesting…situation for disability accomodations.  Not bad entirely; it’s had pros and cons for me.  The way getting accomodations works for me is like this: I bring my doctor’s letter to the law school’s disability coordinator, who we’ll call W.  The disability coordinator faxes the letter over to the university’s disability resources center. ( I officially have a file there and a counselor, but I’ve only really interacted with her over one issue.)  The disability resources center sends back its evaluation of what accomodations I’m to be accorded.  W and the law school student resources secretary then arrange for the accomodations.

Now, it’s definitely had upsides for me.  When I first came to law school, I was sick with a mystery illness that was causing me extreme fatigue and pain.  I didn’t get any answers on ANYTHING until January of my first year, so that first semester, I was operating completely on my own.  I had no accomodation letter, no documentation to suggest I needed assistance, nothing.  Despite the fact that the Disability Resource Center could do nothing without documentation, because it’s a semi-autonomous entity, the law school was able to give me a couple of accomodations: they gave me a keycard to the accessible door, they retroactively reset my status to part time so I didn’t have to accept ‘Withdrawal’ or Fs on my transcrips, and they arranged for me to have extra test time and a little room to myself.  These may sound like small things, but especially that retoractive part-time status really helped me that first impossible semester of law school and fibromyalgia.

On the whole, the set-up has been convenient to me.  The law school is in 2 buildings, one short block apart.  I know exactly where W’s office is.  I don’t have to try to make it over to the Disability Resources Center, which is halfway across campus.  W is in general a very nice, very helpful person, as is the secretary for that office.  The dean of students has been willing to get involved, which has mostly been a very good thing for me – it was her influence that got me changed to part-time retroactively my first year, and her influence that got me a mentor when I struggled academically.

It’s not perfect.  In my first year, I had an incident with a professor.  She said something that I read to be making fun of the way I walk because of my disability, because I was late returning to class after a break.  She never did that to anyone else who was late returning.  I went to W and to the dean of students, and crying I told them about what had happened.  What she had said.  The way she had stood there in silence, with the whole class’s attention drawn to me, as I hobbled with my pained little half-steps to my seat, before she resumed her lecture.  The another student in the class who was a person with a disability completely agreed with my reading of the situation – that she had made fun of my disability and deliberately subjected me to the staring of my classmates, who were already viciously unfriendly to me because of the way my disability made me different and because I knew too much.  My counselor/case manager at the disability resource center was appalled by what happened, and said that she would love to write a letter to the professor detailing the problems with what she had done…except that the relative autonomy of the law school and the existance of a disability coordinator there meant she’d be doing some serious stepping on people’s toes.  People whose cooperation I needed for my accomodations, for assistence with professors, so on.  So I had to let go the possibility of a strongly worded letter that took my side, because offending the people whose help you need is never a wise idea.  The dean of students eventually told the professor how I’d taken things, and the professor told me she hadn’t intended things that way.  I still don’t believe that and now, nearly three years later, I still avoid her – step out of hallways she’s coming down, avoid meeting her eyes and opening the potential for a conversation, moving away from her at Women’s Law Caucus events that we both attend.  It’s hard to forget people who have held you out for social opprobrium and shame.  People who mock the way you move because of your disability.

Anyhow, I’m sorry for that…sidetrack.  It’s hard to explain how badly I felt that I’d been failed by W and the dean of students at my law school without going into the details about what happened.

That January, I finally got an accomodation letter and we started playing with ways to help me with one of the issues I had an accomodation for.  To their credit, they were willing to try several different approaches I suggested before I decided that the one they’d suggested to begin with was going to be the best.

Since then, I’ve gotten a handful of new accomodations, and things have been gracefully managed on everything but this latest snafu with the classroom change.  They haven’t been able to do anything for me about professors’ attendence requirements as long as those requirements don’t exceed the 80% required by the American Bar Association (which has withstood challenges under the Americans with Disabilities Act), and I’ve yet to see a professor who required more.

To be honest, on the whole they’ve been thoroughly helpful and friendly, and a good place to go for advice.  I hate to think that you all have this image of a difficult and uncaring office because of this latest exchange.  To be honest, this latest exchange seemed quite out of character for them, which is part of why it upset me so.  They’ve done a good many things that were inconvenient for them on my behalf, and to have them suddenly react as if what I wanted was a nuisance and an inconvenience…well.  It was quite an unpleasant surprise.

Edited to add:  I just realized that I had forgotten one of the BIG things that the disability liason and the dean of students had worked out for me.  Right before the fall exam period for my second year, I fell and sprained my back.  Because of that, I couldn’t sit up for more than an hour or so at a time, and then needed a significant amount of time lying down flat.  Even that hour or so was only on my extremely comfortable couch – anything less than that, and I’d get half that time.  I couldn’t get set up in a position where I could have my laptop on the bed with me without causing at least as much pain as sitting up with it.  So they allowed me to take exams without time limits, and from my own home.  It was an enormous break in protocol, and it was all that allowed me to take my exams that semester.  They had no obligation to do such a thing, since it wasn’t a permanent state of affairs, but they did anyhow and I am very grateful for that.

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Sorry I’m so inconvenient

I mentioned a couple of months ago that I’d been diagnosed with POTS and that it made me extremely sensitive to heat.  And when I say sensitive to heat, I mean prone to dizziness, nausea and vomiting, collapsing, and fainting.  It’s really annoying, because it’s something that comes up at times when you wouldn’t expect trouble.

Like in one of my classes.

The main building of my law school is 8 stories tall.  On the upper 3 stories, there are 2 little boxy classrooms per floor.  They have a wall of windows that face into the atrium that goes up the center of the building from the third floor to the ceiling.  For the number of people they seat, they’re very small classrooms.  They seat about 35 people plus the professor, with 2 rows on the left and right of the classroom and two rows across the back of the room.

Unfortunately, they have a terrible tendancy of getting hot.  The higher in the building you go, the hotter these little rooms seem to get.  It’s a combination of poor air circulation, density of people, and heat rising through the atrium and passing through the wall of windows at the back of the room.

I missed the first two weeks of class.  The first week, it was incredibly hot and my boyfriend was out of town at a funeral, and Hudson had an accident on the sidewalk, prompting me to decide he shouldn’t be out in public for a couple days until things cleared up.  I honestly can’t tell you why I missed the second week.  I just don’t remember.

The third week, I went to class and was ROASTED.  It was hot enough that I felt ill and dizzy, despite drinking about a litre of liquids during the class, between my gatorade and my water.  The only reason I made it through was because I was wearing summery clothes – relatively skimpy.  Incidentally, that week, the professor stopped me and recommended that I switch from taking his class officially to taking the class as a guided research class.  He’s one of the professors who is very strict about attendence rules, and unfortunately law school attendence requirements have been held to be reasonable under the Americans with Disabilities Act, so there’s nothing I can do about it.  By taking it as guided research, I’d be able to miss more classes without failing.

I fired off an email to the disability coordinator explaining the problem with the temperature in the classroom and pointing out that it’s only likely to get worse as we swing into fall and they start turning on the heat in the building (not to mention the fact that I’ll need to dress in warmer clothing).  I got an email back from him stating that as I was taking it as guided research, I should have enough flexibility to deal with the problem.

That meant another week in the same classroom, which meant choosing a spaghetti strap, low cut dress even though the weather outside was a bit too cool for that.  I was still too warm, and that time actually felt like I might fall over when it was time to get up and go.  I had to sit for a while after people were leaving.  Fortunately, the doors being opened lets out most of the excess heat, so I was okay pretty soon after.

Of course I emailed him back and explained that because of the unpredictable nature of POTS, I’d have to not go to any classes in order to avoid the risk of a collapse or faint.  Perhaps the most frustrating part of the whole thing is that the first thing I lose is my ability to tell how my body is doing and what I need to do to prevent problems.  I was a bit annoyed that my original email explaining why I couldn’t be in that classroom wasn’t good enough for him.  It felt a little bit like they were trying to shunt me off to the side and make ‘accomodations’ that were the least inconvenient for them – put her in a guided research instead of a class, and then it’s all on her if she can’t get there!

In the end, they moved the classroom.  It’s not a huge improvement – we’re still in one of the same boxy little classrooms, just moved from the 8th (top) floor to the 6th floor.  The temperature is somewhat lower, though I do not know if it will be enough once the building switches from air conditioning to heating.

I hate things like this, where it feels like I’m treated as an inconvenience.  It’s not like I get some kind of power trip asking for accomodations.  I don’t push people around because it’s fun.  When I ask for something, it’s because I NEED it, and my health, safety, and ability to continue going to school are jeopardized.

Look, I’m sorry I’m so inconvenient.  But if you had to deal with the sheer number of inconveniences I deal with every day because of my disabilities, you’d realize that I’m really asking for very little.

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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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Something more lighthearted…

One of the funny things about working with Hudson is that he has weird obsessions. Some of them are transient, and some seem to be here to stay.

When I first got Hudson, he wanted to watch me pee. He wanted to so badly that he would nudge my underwear out of the way so he could see.

He also, at that point, felt the need to check the toilet every single time before it was flushed. Sometimes he’d watch things swirling around as it flushed.

Fortunately, the obsession with me peeing faded after about 2 months, and his toilet-checks have been reduced to an occasional thing rather than a constant.

However, he has had one obsession that has stayed relatively constant – inspecting my pants and socks. Before I put on pants (be they jeans, slacks, or pajamas), he insists on giving them a thorough sniffing-over. The same goes for socks. If I don’t stop and let him sniff things before I put them on, he can make getting dressed difficult! He’s so insistant about sniffing them that he’ll do it as I’m trying to put them on if I don’t let him do his thing first. He used to have the same sentiment about my underwear, which fortunately has mostly gone away – once in a while he’ll still decide he needs to sniff them, but only rarely. He so loves sniffing my pants, however, that if I have a pair of pants in my hands, he starts grinning and wagging his tail. It really is quite comical how excited he is about my pants.

His final obsession seems to be with snow. He MUST sniff it. This one gets difficult and earns him a lot of corrections as he gets very distracted by his desire to sniff the snow. He’s far worse about snow than he is about anything else he might go by. If there’s a snowbank, he wants his snout in it! (Which gets his beard adorably filled with snow – it’s really cute, when I’m not trying to get him to do something!)

He feels like he must shake every time he stands, whether he’s in harness or not. He does this even when he’s clipped short for the summer. MUST SHAKE! says the dog. He doesn’t do it immediately, so sometimes we’ll be in the middle of the street before he decides to shake, and then I have to drag him along instead of letting him stop and shake. It’s rather embarassing in class, when I have to get up during class to go to the bathroom or get more water, because he’s SO noisy when he shakes with his harness on! I feel like the spotlight gets dragged from the professor to me sometimes, and I often end up apologizing after class even though I warned the professor that it would happen at the start of the semester.

So there you are, some of Hudson’s more bizarre quirks. I definitely didn’t expect him to…well, have so much personality, I guess!

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The culture of love, lust, violence, and rape

We live in a culture that normalizes violence and rape as appropriate responses to love and lust.

I’m sure this isn’t quite what you expected of a post on Valentine’s Day (er, okay, a few days later – this was intended to go up on Valentine’s Day), but I take my job as an advocate of women and of people with disabilities fairly seriously. And yeah, I do think of myself as being an advocate. It’s better than being a victim.

Ooh, the v-word.

This is part one woman’s experience and part a little talk about how things are. Because when it comes to how we treat love and lust, things ain’t good, honey. Things ain’t good.

The overwhelming majority of victims of domestic abuse are female. An appalling proportion of PWDs have lived through abuse. The majority of rape victims, especially date rape victims, are women. The worst part isn’t just the numbers, but how our culture normalizes and accepts these things.

Why the abuse? I’d say it has to do with power, control, and value. Culturally, we value men over women, ABs over PWDs. Women, children, and PWDs find ourselves in places where someone else can have control and power over us. That’s not to say that people who are AB or male aren’t ever abused. I’m talking about the majority.

Wow, that’s a majority you don’t want to find yourself part of.

And yet, here I am. I’ve survived abuse of multiple kinds. Oh yes, that I have lived through.

So here are my scars. I grew up in a family that yells, verbal violence if you will. One side of my extended family is prone to saying incredibly hurtful things – one of my cousins knows that he was unwanted because he was born male, my grandfather makes very nasty comments about people’s weight and general appearances, my aunt made us learn the song ‘If I only had a brain’ when we were children. When I was 17, I found myself in a relationship I didn’t intend, and one that was abusive, for all the typical reasons – I didn’t know how to say no, I didn’t think a woman who was smart and strong ended up in abusive situations, he just kept pushing and pushing, and I didn’t want to hurt him (especially this, because he was emotionally unstable and I felt like it would be my fault if he committed suicide because I hurt him). I can’t tell you how many times, when I was dating, I moved a man’s hand off of somewhere I didn’t want it and had him put it back. And the times when they de-valued my boundaries even more – when I told them to keep their hand off of a location verbally, making it absolutely clear what I meant, and was told that he ‘just couldn’t help [him]self’. When I was told that it was my mental illness that was causing the break-up, that he could see it coming, when the problem was really that he didn’t respect boundaries on ANY level. I’ve been verbally abused quite deliberately by an AB housemate (who, among other things, told me that I was faking it, that I was drug-seeking, that I was crazy and sick in the head, and that I should adopt a dog from the pound so a ‘real’ disabled person could get a service dog instead of me). Add to the list of people who have lashed out at me my AB classmates, even by an AB professor.

I have the utmost respect for a great many men in my life, so the excuse that a man is ruled by his gonads just doesn’t fly with me. I know too many men who would stop at a suggestion that their interest or touch was undesired, and men who have stepped between me and an abuser. To say that men can’t help themselves is to say that their penis has the ability to lobotamize them. Can you really believe that? No. It’s something we’ve imbedded into our culture quite thoroughly, though. And as for the blue balls argument, frankly a man is quite able to move himself into the bathroom and take care of things for himself it that’s such a problem for him.

We teach date-rape quite well. How many times do we blame women for getting drunk rather than men for taking advantage of drunkenness? If you want a particularly cringe-worthy episode of that, check out Jamie Foxx’s ‘Blame it on the Alcohol’, which includes the lovely line “Couple more shots you open up like a book”, and lists several brands of alcohol the girl should blame for what happens…rather than blaming the man who pressures or assaults her. We have enough culture of getting women drunk for sex that it’s unwanted. Women learn that they ‘owe’ someone sex if they get an expensive dinner or gifts. And of course, we’re told that we shouldn’t be mean, shouldn’t push back, shouldn’t hurt someone’s feelings by refusing. Our wants and needs should be subsumed under a veneer of ‘polite behavior’.

We create a culture of blame for women who are raped. We ask what they were wearing, if they were drunk, where they were walking, if they had suggestive conversations or behavior. We ask if they locked their doors, if they were careful to stay out of dark places. We ask if they fought back, if they yelled, if they tried to prevent their rape. We tell women that they should not walk alone after dark, that they should only drink with friends to watch out for them, and that they must watch their drinks at all time.

And then there is domestic abuse. Instead of helping women escape from abusive situations, we tell them that they need to get themselves out without any regard for the fact that they probably have been cut off from friends, family, and finances needed to break free. We say that domestic abuse is a terrible problem and we should fight it, but we show it on TV as a ‘plot point’. As a matter of fact, we are so conditioned to accept it that shows have implied threat of violence…and most people don’t even notice it.

All of this adds up to a terrible toll on women, on people with disabilities, and on children.

So what do we do?

We teach our SONS as well as our daughters that they should not just believe ‘no means no’, but they should seek ‘yes means yes’ – enthusiastic participation instead of passive lack of resistance. We stop treating women as the sexual gatekeepers who must be persuaded. We believe women when they say they have been assaulted, made uncomfortable, threatened, or hurt. We support people who have lived through this, whether they describe themselves as victims or survivors. We blame the attacker, not the person who is harmed. We support shelters, especially domestic abuse shelters. We put in better lighting. We teach women that they matter, that their feelings are important. We stop objectifying women. We stop comparing women to food, to animals, to art, to mannekins, and start treating them as people. We teach people that there is NOTHING that obligates another person to ‘give’ sex – not marriage, not expensive dinners, not dates, not even saying that they will (and later changing their minds).

Most importantly, we STOP teaching our daughters to be ‘nice girls’, because being ‘nice’ lets predators in. It’s incredibly important to create a difference between polite social behavior and de-valuing our own needs and wants.

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Disability and disasters

One of the unfortunate things about the cultural phenomenon of disability is that we rarely make contingency plans for PWDs, and even more rarely do we make effective ones. Even if there is a contingency plan for PWDs, it’s not uncommon for us to be left in the dark about what they are!

This particular post is partly inspired by the disaster in Haiti, partly by the massive snowfall in the mid-Atlantic, and partly by my experiences with fire alarms.

So, Haiti. We have a country where a large amount of the major infrastructure has been destroyed. The roads, government programs, buildings, hospitals – a great amount of the services people rely on are in ruins. This becomes particularly problematic when you are disabled. To get food or safe water, you must wait in long lines – something that a person with a disability like mine would be unable to do. Much of the shelter that is available is not accessible, as Haiti does not have a law comperable to the ADA that would require at least some degree of accessibility. (I’m not going to go into how limited that requirement is, or how often it’s flouted here. We at least theoretically have standards that increase accessibility – Haiti does not) Medication and medical care are scarce, including supplies like catheters and osteomy bags, which are necessary for some PWDs.

This is all compounded by the fact that most of the operatives for NGOs are able-bodied people. Their first priority is to serve the masses as much as possible, and because people with disabilities might need more assistance, they get de-prioritized. We also need different services sometimes, and the NGOs are trying to provide the basics that everyone needs rather than the specific treatment needed by comparatively few. Finally, when planning these big operations, most NGOs do not give much consideration to needs of PWDs – they are mostly AB and thus have the luxury of not considering what a PWD needs day to day. Because of this, their plans do not include making the necessary arrangements for PWDs. In short, we are forgotten people.

Let’s talk about these big snowstorms recently affecting the mid-Atlantic region of the US. These were relatively severe for that region, in terms of deposit – 20+ inches each storm. Worse yet, two of these storms were within a week of each other, and there was not enough warming in between for the snow to fully melt – just enough to form a layer of ice under the snow.

So, you have deposits of up to 55 inches in the space of 1 week. The major streets get plowed and salted, and in some areas even the sidewalks get salted. But only in some areas, generally the most expensive parts of town. The smaller streets do not get plowed or salted at all, and this results in a problem.

With drifts up to mid-thigh on a man, the streets are massively unaccessible. I’m a relatively ambulatory PWD – I walk with the assistance of my service dog – and even I can’t go more than a few feet. We sink into the snow, skid, get soaked, and get exhausted. The car is buried, and worse than that, in many areas once you park, you can’t get back on to the road. Why? Well, the road hasn’t been plowed or salted, just packed down by people driving over it, so there is a 4″ pack of ice sitting on the road. The last time we got stuck in one of those spots, it took the boyfriend and 5 men, 2 snow shovels, 1 heavy metal shovel, a cardboard box, plus 2 cups of road salt the coffee shop gave me, to get us back onto the road. People aren’t just getting stuck in their parking spaces, they get stuck on the road as well, completely blocking our little one way streets. They also slide around on this unpredictable, unsafe surface, resulting in accidents and very close calls.

And thus, I am only able to get out of the house because of my boyfriend and the car. He drops me at the front door of where ever I am going, because I can’t walk far in this mess. He digs the car out. He’s shoveled more snow in the past week than in the two years before that. If we didn’t have a car, I’d be completely housebound because our sidewalks are still over a foot deep in snow and slick with ice. Most people walk on the roadway, which is treacherous ice, because the snow drifts haven’t been packed down in many places. If I was in a wheelchair, I’d be out of luck. Why? Because the cities don’t salt or plow residential areas when the snow hits. Even a small amount of snow makes accessibility questionable. And even in areas where they do salt or plow the streets, they almost never plow or salt the sidewalks, leaving a person with the options of attempting to slog through the snow (and the plow leavings, where they cross streets) or slip and slide along the road and hope they don’t get hit.

When it comes to snow and other weather disasters, the city doesn’t think about us. We get forgotten again.

And then there are fire evacuations. In fires, you aren’t supposed to use the elevators. People who are AB or ambulatory get sent down the stairs. And the rest of us? We get told to wait in a ‘fire isolation’ stair if one exists, with a promise that someone will inform the firefighters that we are up there. What if the fire moves too fast? What if no one remembers to tell the firefighters to come get us?

When buildings are built, our ability to evacuate isn’t considered. We are supposed to be content with a plan that relies on A) a person remembering we are in the building B) telling someone who can help us and C) that person being able to help us. We have no ability to help ourselves, take initiative, even direct matters to go in the way we desire. No autonomy.

Oh yes, we are forgotten people. When disasters strike, there is often very little planning for our safety. Subways have escape routes, but they rarely have escape plans for PWDs outside of ‘someone could carry them’. No plans that respect our dignity and autonomy. Tall buildings have much the same problem. Emergency evacuations because of natural disasters face, again, the same problem.

The worst part is that we are rarely informed about what we are supposed to do in an emergency. I had to ask the administration at my school to find out where I was supposed to go in a fire, since I can’t manage multiple flights of stairs. If our house were to burn down, it’s hard to find out which shelters would be accessible to me. In emergency evacutations, the place for PWDs to be picked up are often different…and announced at a fraction of the frequency that other evacuation sites are mentioned. Even if there are plans in place, people forget to inform us.

If you are part of an organization, see if you have a plan for the evacuation of people with disabilities. If you do, does it respect their autonomy or does it make them rely on someone rescuing them? Is it well publicized? Do you post notices or send out memos to make sure that everyone – both people with disabilities and ablebodied people – know what the plan is?

If you didn’t like your answers to any of those, talk to your administration and management and see if you can change them. Don’t forget us.

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What was that, professor?

Well, I had the first maybe-absence-seizure in class yesterday.

The professor was talking, I was taking notes, and suddenly the professor was talking about some different facet on a different slide about the same general subject. Mid-sentence, as far as I remembered.

Which I’m sure isn’t right. That professor tends to be pretty coherent and organized, and she goes through her slides in order. The fact that it wasn’t the same slide in her Powerpoint is what decided me that yes, I really must have lost time. Again.

Blah.

This has just been a rough week. I’ve now had either 2 or 3 migraines (depending on whether you count a migraine returning circa 6 hours later as a second migraine) and 2 absence seizures since Thursday.

I am, at this point, seriously considering taking a medical withdrawal for this semester. This is not the first time I’ve been pushed to that point. Having accepted that it may be necessary has been kind of liberating; I’m not panicking about the reading that isn’t getting done because I can’t concentrate well enough to make sense of it. I just haven’t made the actual decision to pull the plug on this semester yet.

Oh bother, I just realized I haven’t told you guys about the appointment with the neurologist Friday.

There unfortunately isn’t much to report. They aren’t sure what it is. Maybe it’s absence seizures, but they don’t quite fit the profile – most of them are much too long. Maybe it’s some form of structural problem in the brain, but my MRI a little less than a year ago is clean. There’s some potential for it to be a problem with a blood vessel, the possibility of which becomes far more likely when you consider that I have family history of brain aneurysms. They’ll be doing a MRA – that is, a magnetic resonance angiogram, a map of the blood vessels. I’m also to have an EEG done, but they aren’t terribly hopeful about catching the activity as these things are only happening about twice a week.

The nuisance here is that I am not allowed to drive until we know what is going on, and they won’t have me back for 3 months. So here I am, stuck without being able to use my car, as my northern city slides into late fall and winter. I miss the temperate southern climes I grew up in, where frost was the worst you could expect on the coldest of mornings.

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