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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After the Separation

I mentioned in a couple of posts that Hudson and I had some difficulties after we were forced to be separated for 3 hours a week ago on Sunday.  I believe it was the first time in his life he was left entirely alone – always before, there has been company.  First his litter and his dam, then his puppy-raiser (who I know never left him alone because he was part of a prison program, so there is no leaving the dog in the other room for the night or similar) , then his kennel-mate and his trainer, and then me and the boyfriend.  He is a very emotionally needy pup, and will often come over and nosebump me to get my attention and a pat on the head.  When he is parted from me, he is always extremely happy and eager to be returned to me.  (this happens, for example, when I am ill and the boyfriend must take him out, or when I have a severe IBS attack and must run for the bathroom while the dog is eating his dinner, or when I need x-rays and other imaging done that would either be a health hazard or so loud as to unsettle him)

Being a very sensitive, needy dog who has never been left alone, he was quite upset to have it happen to him, and for so long!  It was somewhere between 2 1/2 and 3 hours altogether that he was left home.  I am quite happy to note that he did not become destructive at all.  I worried mostly that he might hurt himself trying to get back to me, but fortunately that did not happen.

That is not to say it was smooth sailing.

When I first came home, he was delighted to see me again.  He scooted around like he does when he was excited, his tail whipping so hard back and forth that it struck his own flanks.  He nearly leapt into my lap.

However, that was short-lived.

Like a small child, Hudson went back and forth – he was upset and wanted my comforting, but he was also upset with ME and wanted nothing to do with me.  He’d come over and bump me with his nose or his head to get my attention like he does sometimes when he wants affection, and after just a moment of petting he’d walk away from me.  It was totally abnormal for him, because usually he wants to hang out as long as I’ll pet him!  Other times, I’d invite him to come be petted and he’d just lay there looking at me, sometimes not even bothering to look at me.

Worse yet, from my perspective, is that he started ignoring commands.  It’s one thing for him to ignore me when I’m offering affection – it’s a bit of a snub and hurts your feelings a bit, but it’s not removing the very capabilities you rely on.  On the other hand, when your service dog won’t even follow you out of a room on command, you worry about relying on them.  When I tell him to stand, the command I use when I need to use him to steady me when standing or transferring, will he ignore me and keep moving, risking injury to us both?  When I ask him to pick something up for me, will he?  When I need him, can I rely on him?  Or will he keep ignoring me?

I suppose I’m lucky that I continued to be sick and not leave the house.  I had to do things for myself that he usually does – get up and turn on and off the light, figure out how to pick up things off the floor, use the edge of the bathtub to steady myself instead of the dog when getting up off the toilet, kick things out of the way instead of having the dog move them…it was a rough couple of days, but managable.  I don’t know what I would have done if I had to leave the house on Sunday or Monday.

On Tuesday, I had to go out, because Hudson and I were due to be tested for our recertification.  I was very, very worried that we wouldn’t pass.  A big part of the test is how well the team works together, and to judge by Sunday and Monday, we might not work well at all that day!  He ended up behaving fairly well.  Not at our best, but it was good enough to pass.  It was a huge relief to pass…and be done.  To not have to worry about this for another two years.

But I went through 2 1/2 days of my service dog not wanting to have anything to do with me, and that was their fault for separating us.  I went through more pain at the hospital, I was alone, and I had to deal with days of my service dog ignoring me.  If it weren’t for them, all I would have had to deal with last week was a nasty stomach virus.

And THAT, that I could have handled.

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Emergency fail

Well well well, wouldn’t you know it, I managed to get discriminated against twice in one night!  Saturday was quite the exciting night, as it involved me being ill enough that we were wondering if we should head to an ER before I went all floppy and semi-responsive and started having pain in my chest and difficulty breathing.  I also had a dehydration-induced migraine.

Looking back, I think the difficulty breathing was just that I was having difficulty doing ANYTHING.  When I get dehydrated, I have this alarming tendency to go from okay to NOT very quickly.  And, well, there’s not much like throwing up everything and continuing to throw up liquid out of your previously empty stomach to make you dehydrated.

I wasn’t able to help move me much, and we live in a narrow little row house.  Without my help, the boyfriend really can’t get me down the stairs.  He was getting scared and I was getting less responsive, and complaining that my chest hurt, so he called an ambulance.  I think it was a wise move given the situation.

Except, y’know, that the ambulance wasn’t terribly helpful.  First off, because we live in a narrow little rowhouse, they can’t easily get the gurney upstairs to the bedroom.  So they sent one of them up to help the boyfriend maneuver me.  After correcting him to not lever my shoulder (dislocated Thursday), I still had to manage to walk down the hallway, which was a near thing.  My legs were shaking, and I’m still surprised I didn’t just fold up.  Being vertical and dehydrated for me puts me at a high risk of collapse or faint.

We managed to get me down the stairs and to the gurney waiting outside our front door.  They get me on the gurney and strap me in, then wheel me into the ambulance.  As this is happening, the boyfriend decides to drive to the hospital because he thinks the ambulance will be too crowded with him and the service dog inside.  One of the EMTs is pretty cool and says something that we later realize may have been a warning about the ER, but the other one…the other one, who was driving, decides to stand outside the doors of the ambulance and harass me over the service dog.  What do I think he’s going to do to me in the ER?  It’s unfair to other people to bring my dog into the ER.  Why do I think it’s okay to do that?  So on and so forth.  I eventually tell him to knock it off, which he reacts to in surprise as if he wasn’t being completely inappropriate.

(Incidentally, my ankle partially dislocated on the way to the ER.  It wasn’t really anyone’s fault, but my feet were strapped in and we hit a little bump and there went my ankle.  It certainly added to the misery of the evening!)

So we get to the ER.  By the time the ambulance gets there, the boyfriend is already there with Hudson, arguing with security about letting my service dog into the ER.  Yeah, you got that right, security said no service dog in the ER.  It’s discrimination.  We’ve taken Hudson into other ERs.  We would have gone to the one we know is service-dog friendly (where, in fact, they love Hudson – yeah, they’ve seen him that often), but when you’re in an ambulance, you don’t have all that much choice over where you get taken.

So the boyfriend argued with security.  The first guard seemed like a decent human being, but one hamstrung by policy.  He had to call his supervisor, and THAT guy…that guy was the worst we ran into all night.  He said that “human rights trump animal rights” and ignored that it wasn’t Hudson’s rights he was trampling, it was MINE.  When I was brought from registration to triage, I noticed that Hudson and the boyfriend were gone, so I asked where my dog and my boyfriend were.  The triage nurse explained to me that they weren’t allowing the dog.  I told them, it’s like taking away someone’s prosthetic leg.  They argued that since I was in a wheelchair and would soon be on a gurney, I didn’t need the service dog.  I requested her supervisor.  Her supervisor came out, and they asked me what exactly Hudson does.  I explained a list of the things he does, and they said that since they could do all of that for me, I didn’t need Hudson.  I told them again that they were taking away my independence, that the entire point of a service dog is being able to do those things for myself.  I told them it was like taking away someone’s prosthetic leg, something they had no right to do.  They told me that they had to keep the dog out just in case someone came in with asthma and a dog allergy.  now, if they HAD a patient like that in the ER and couldn’t sufficiently separate us, that would have been a reasonable reason not to allow Hudson in.  However, the theoretical possibility is not.  Hospitals are allowed to restrict dogs from places like burn wards, where the slightest contagion can cause dangerous infections.  However, they are NOT allowed to just blanket refuse to allow service dogs into their facility.

The security supervisor kept after me.  The guard said they were trying for compromise and I said no, you don’t want a compromise.  You want me to do things the way you want.  The guard said no, but the supervisor said ‘I won’t lie to you, you’re right.’  I said that’s a bully’s version of compromise, and you’re no better than a schoolyard bully throwing your weight around.

The ER supervisor said I had the option of going elsewhere.  Bullshit.  When you’ve been brought in by ambulance because you’re barely able to stand with tons of assistance, you don’t have the option of going somewhere else.  Especially when somewhere else is on the far side of the city.  I told them to just get me through and get me out of here.

The security supervisor followed the boyfriend outside, where he was waiting with Hudson, and started harassing him.  He said that the boyfriend was ‘making trouble’ (by standing quietly outside after he’d given up on being able to protect my rights?) and kept after him about the dog being unnecessary in the hospital.  The boyfriend eventually took Hudson home, because he didn’t have any other options, and returned for me.  I think it was the first time in his furry little life that Hudson’s been left entirely alone, and to be honest I was worried he’d hurt himself trying to get back to me.  He’s always had someone with him – his puppy-raiser, his kennel-mate, trainers, me.

So I was left completely alone.  I was reliant on the nurses answering the call button (which took forever) for the most basic of things – needing to pee, needing the lights shut off and the door closed because of the migraine, wanting the damn monitor to stop beeping because it felt like someone was driving spikes into my head every time it beeped.  Things that my boyfriend or my dog could have helped with.  I had to wait for an HOUR at one point to get the call button answered, and the nurse walked in and pushed the ‘off’ switch without even asking me why I needed her, abandoning me with the fluorescent lights still on (my god are those things painful with a migraine) and the door open to all the noise of the ER including a woman yelling.  I was in so much more pain than necessary from all these little things that could have been done for me if I hadn’t been trapped alone by their discriminatory policies.  Bullshit they could do these things for me.  Bullshit that I’d be okay without someone to help me.  Bullshit bullshit bullshit.

I think my boyfriend being kept from me was retaliation for being ‘uppity’ and demanding my rights.  Another claim to file.

They have the right to bar a dog with reason – if the dog presents a danger to others (actual, not theoretical) or if the dog is out of control and behaving inappropriately.

I spoke to the security today and was informed that what happened was against policy.  However, as 4 people acting within their job capabilities denied me access, it’s still a violation for which they are liable.  I plan to sue them.  At the very least, they are liable for a $10,000 dollar fine.  I also want training to EVERY employee mandated.  I’m torn about whether I’d prefer a formal apology or money damages; the whole situation was egregious, I suffered more pain because of it, and damn is it ever upsetting to be discriminated against.  I cried as I lay there, alone and in pain, and they need to pay for that.

At this point, as I see it, I have 3 choices: the first is to take my case to the Department of Justice, which is the federal branch that prosecutes ADA violations, the second is to take my case to a comparable state agency, and the third is to find a lawyer and prosecute the case myself.  I’m inclined towards the third option because if I take it to a government agency, I have virtually no control over what happens and what is demanded as reparation on my behalf.

But believe me, no matter which path I end up taking, I WILL be prosecuting this.  It was a horrific experience, and I do not want anyone else to go through it.  With cases like this, the only way to get through to people is to hit them where they’ll feel it – the pocketbook.  I hate that this is the only way to make people really learn lessons, but so be it.

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The Fall-out

Well, I knew a day like Wednesday would have fall-out.

Because of the taxi cab discrimination, I took public transit to get home. It was harder than I expected. For one thing, the first subway station I went to was 4 blocks from work (because it’s a solidly accessible station), and it had a broken elevator and was thus completely inaccessible. So I went back two streets to the partially accessible station and hoped I was on the accessible side. I wasn’t, but there were ramps that said ‘police use only’ right next to the stairs leading you up over the subway to the other side, and I’ll admit I used them.

Then I got on a train that wasn’t due to stop at my stop, and had to get off a stop early. If I had waited there just a minute, the next train that would have gone to my stop would have been there, but I had decided that I couldn’t wait in the heat not knowing when the next train would come. I was in the pedestrian overpass when the next train came.

So then we had to take the longer route home. Poor Hudson had already been dragged 6 blocks in the heat, poor thing, and we had almost a mile from the station to home. He was panting hard and I’d had to slow down my scooter because he couldn’t keep up his trot. I got home about 20 minutes late, but at least I’d called my aide so she knew I wouldn’t be on time.

I couldn’t make it into work the next day. With POTS, it tends to take days to recover from heat exposure, and this is no different. I’m still feeling out of sorts today. I missed class yesterday as well. I also collapsed. I was getting up off the couch and I got to standing and then suddenly I was on the floor. I nearly squashed Hudson, but he had the sense to dart out of the way. I got stuck laying there for a while. I don’t know how long, only that Hudson was worried about me and nosing my face and at first I couldn’t even push him away a little. I couldn’t even bring my hands up to my face. I probably should have called myself an ambulance. Unfortunately, if I’m at the collapsing point, my brain is pretty badly addled and my judgment sucks. I was able to reason that they would have to break down the locked front door, and that was a bad thing…and I really never got farther than that.

I’m now in a bit of trouble, because at this point I’ve missed 2 scheduled days of my internship. I have to talk to the disability coordinator, and I’ll probably need to get a note from my doctor explaining POTS. I’m sure I’ll have to make up the time.

There was one good piece of ‘fall-out’. Well, at least I think it’s good. Yesterday, I called the cab company and spoke to their manager about the way I’d been treated by the cab sent to pick me up. The manager was both very apologetic and clearly upset by the discrimination. He said that driver would be taken off their roster, and he told me what I needed to do to get him reviewed for possible loss of taxi license. I figure if he loses his license, I’ll consider it enough, but if he doesn’t I may file an ADA complaint against him. I think it needs to be done because the next person he discriminates against may be in worse shape than I am and less able to defend themselves after the fact.

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Travel fail

I had a distinctly unpleasant experience today: I was discriminated against.

When you have a disability, you get used to a lot of the same kinds of discrimination: counters set too high, steps to get in that you can’t get over if you’re wheeled, restaurant owners telling you that you can’t bring your (dog, scooter, sometimes even wheelchair) in. It gets old fast, but you get used to it because it happens all the time.

It’s shocking, on the other hand, when you get it somewhere you don’t expect it. Somewhere it hasn’t happened to you before.

Yesterday, a taxi I called refused to transport Hudson and I.

I called the dispatch to get my cab and told them that I had a scooter that would break down and fit in the trunk. I didn’t mention the service dog because I’m under no obligation to do so.

The cab arrived 5 minutes late and knocked on the door of the house across the street, but I was watching for a cab to arrive so I saw him. I drove the scooter out, and I had Hudson with me.

The driver said, “You didn’t mention the dog when you called dispatch. You have to mention the dog.” I told him that I didn’t have to, because legally they had to transport service dogs. He repeated himself. Then he said he wasn’t the cab who was sent for me; they would be along in a few minutes. He got into his cab and drove off.

I’m sure all of you out there in cyberland have seen through what he said. Of course he was the cab sent for me! I live on a little tiny residential street. Cabs are rare here, and I end up calling them more often than anyone else on the street, because I have the most need of outside transportation.

Well, I wasn’t thinking at my best. It was first thing in a hectic morning for me, because my alarm hadn’t woken me and I’d overslept a whole hour and thus had barely gotten out the door at a near-acceptable time. So I waited almost 10 minutes, and then called the cab company to ask where my cab was.

They told me he was already there. So I told them about the driver who refused my service dog and drove off without me. They sounded pretty appalled and sent out a 2nd cab. That cabbie was at least nice and helpful.

I’m still shocked by the blatent discrimination. I’m waiting on a call back from the cab company’s manager to find out what they’re doing about the cabbie and decide whether I’m going to file a complaint only against the cabbie or if I’m going to file against the cabbie and the company. It mostly depends on how they respond to his wrong.

Fortunately, in the US, I have the Americans with Disabilities Act to make actions like that illegal and provide for legal recourse when they do happen. I can only imagine what it would be like in a country that didn’t have such laws in place.

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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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Balancing career and disability (part 1)

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

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

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

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

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

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

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

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

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

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

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

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

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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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United States Military, I am disappointed!

Today, the Jag Corps made a presentation on campus about working for them.

For those of you not familiar with the military, Jag Corps are the attorneys in the military. They advise on the legal ramifications of actions, defend and prosecute in court-martial cases, and help establish protocol and whatnot.

In a sense, the Jag Corps are the in-house attorneys of the military. Most major corporations have their own attorneys that do basically the same sort of things.

Now, I’m sure most of you know about the military’s infamous ‘Don’t ask, Don’t tell’ standard regarding sexual orientation. That is, as long as a person who is gay, lesbian, bisexual, or queer doesn’t tell anyone, it’s all good and they can play. They can’t get benefits for their partner, obviously, but they can be in the military.

Last week, before the Jag Corps started interviewing here, the school sent around a memorandum. It was a resolution passed by the faculty of my law school in 1997 and reaffirmed and updated a few times. The short version is this: the school is opposed to the military recruiting because of its discriminatory stance on sexual orientation, but they cannot act on that opposition and bar the recruiters because they will lose all federal funding – including our student loans. This resolution is sent to every student, to every faculty member, and to every employer who uses our career center (including the military, I assume).

So here’s my question: why didn’t the school say anything about people with disabilities?

I thought well, maybe it’s because the military realizes that an attorney’s value is not based on whether they can run a mile and do the right number of sit-ups and push-ups in the right amount of time. Maybe, because the Jag Corps officers are never in combat, those of us with physical handicaps can still apply for the jobs.

WRONG!

Nope. A Jag Corps officer (all members of Jag Corps are officers) must complete basic training. They also have to complete bi-annual conditioning checks that they are able to run their mile and do their sit-ups and push-ups.

The fact that I have fire and passion and intellectual brilliance does not matter to the Jag Corps, because I have a physical disability.

And apparently, my law school has had nothing to say about THAT discrimination.

I wrote an email off to the dean about this issue, and if I hear back, I’ll tell you what she said.

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