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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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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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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Access and accomodation (Part 1)

So today, I wanted to talk about the concepts of ‘access’ and ‘accomodation’. (2 part/entry discussion)

In theory, persons with disabilities have many protections under the Americans with Disabilities Act (properly cited as 42 USC 126 §12101).  It was passed in 1990 and amended in 2008 – those dates look terrible when you remember that we passed the Civil Rights Act, which gave comperable protections to people on the basis of race, religion, ethnic origin, and gender, in 1964.   That is to say, it was perfectly legal to discriminate based on disabilities until 1990.  Sick, isn’t it?   

For the sake of example, and because I can’t possibly remember all the different permutations, I’m going to talk about what you have to go through to get disability accomodations for a university (What you need to do for a workplace is very similar).  We’ll get to access in Part 2.

First, you have to prove you’re disabled.  That can be…difficult.  The new amendments, which just went into law Jan 1, 2009, make it easier – they made the scope of what a disability is wider, and the amount of time you were expected to have it shorter (6 months instead of 12 months).  For the sake of argument, let’s assume that your doctor is willing to agree that you’re disabled.  Because that’s the person you have to get to agree with you – if you can’t get a doctor to agree that you’re disabled, and that this disability is an impairment that will last for longer than 6 months, you lose right there.

Next, you have to get your doctor to write an accomodation letter.  The trouble is, the letter has to contain some pretty damn specific language that most doctors seem blissfully unaware of.  (I’m writing down what I remember was in my letter; it was written Jan 2008, so I’m a little rusty on the precise contents)

‘Ms Kali, my patient, is disabled because of severe pain and fatigue of unknown origin.  Because of her disability, she is unable to walk long distances or carry heavy items.  In order to have equal access to the university, she requires parking near her classrooms, and on-campus copies of her textbooks.

Signed, Physician’

Let me break out the ‘vital’ language here – my condition and how it disables me (though they must accomodate you if your doctor records a disability even though s/he cannot say why you have it, as in mine), what I cannot do because of my disability, that I require accomodations in order to have equal access (the most vital phrase in the letter), and what, precisely, my physician thinks I should have.

Very often, you run into enormous problems with these letters.  The doctor won’t mention how you’re disabled because of HIPPA.  The doctor doesn’t list what your disability prevents you from doing, or mentions it so broadly that it’s hard to get at what s/he’s saying.  They use the word ‘request’ or something equally polite instead of ‘require’ – vital language.  They don’t say what you need.

To be perfectly honest, my accomodations letter was written over a year ago when I was being seen by a neurologist, back when I was still being sent around the hospital as they tried to figure out what on earth was going wrong with my body.  As it turns out, I don’t have a neurological disorder, but the letter as it stands is useful enough that I’ve let it alone, though in the near future I will need new ones written as it has become apparent that I need new accomodations added to the old ones.

As I’m a law student and had a bit of an interest in getting this right, I did some research on accomodation letters to see what they needed to look like.  I ended up writing the letter myself, with his office manager/assistant, and then he tweaked it just a bit and signed it.  My experience is…extremely atypical in that, and has to do with the fact that A) my neurologist’s first language wasn’t English and B) I did the research and knew what was needed.  I’ve spoken to other people who have disabilities who got ping-ponged back and forth between their doctor and their disabilities center, as letter after letter didn’t actually have the desired result.  I’m sure you can imagine how incredibly frustrating that is for both the student who needs the accomodations and the doctor.

If I had it to do over again, I’d tweak that letter a lot.  I know a lot now that I didn’t even think about then.

For example, mine would clearly say that I was not to walk up stairs.  THIS would have saved me from the housing fiasco this year, where I was told to talk to the wrong person, verbally assured by that person that I would be put in a first floor apartment, and arrived on move-in day to find….second floor apartment, in a building with no elevators.  All of the apartments that had not been assigned were either on the second floor or higher, or had stairs in the middle of the apartment itself.  I opted for having to come up the stairs to get home, but not having them in my home itself!  Naturally, the person I spoke to has no recollection of that conversation, because surely she would have told me I needed to go through Disability Resources and Services to get the accomodation correctly done.  The typical answer when someone has screwed up, you know – I couldn’t have possibly made that mistake!

One of the major problems with accomodations, however, is that people who do not have disabilities often think in very one-size-fits-all ways.  This is extremely true of access, as well. 

To give you an example, it was very difficult to get across to the appropriate people that the problem with books was that I couldn’t carry them around, because they are so heavy that I am likely to dislocate joints.  Once that was clearly through to the appropriate people, suddenly I could get electronic copies of every book I bought!  THAT was a fantastically useful accomodation.  I have days where I cannot so much as hold up my books, and now rather than trying to read my books from a holder (awkward) or from flat on the table (very bad for my neck), I can have them on my computer!  This particular way of managing books is occasionally used by blind and dyslexic students (so they can have a screen reader read their text to them), but rarely used for physical disabilities.

I am very lucky in that my dean of students has been…amazing…with helping to accomodate my courses around the fact that my disability is unpredictable.  Last semester, I fell right before exams started.  My dean freed my exams from the schedule – which in law school is Not Done – and let me take them at home (also Not Done) as I could, and removed the time limits so that I could lay down as often as I needed to have my back functional (yes, yet again, Not Done).  She has advocated for me in everything.  Our disabilities liason – the law school is not directly under the aegis of the Disabilities Resources and Services office like the rest of the school, everything is done through our liason – has likewise been an awesome resource for me.  Even before I had begun my search for an answer, when I was having problems walking, he got me a key-card for the handicapped entrance of the law school, which does not have stairs (the main one does).

We also have a new president of the university this year, who has a wonderful outlook on disability access problems.  The old president would say oh, you need to fill out this form for this department, which has to be considered by the committee which only meets one day a month…so on.  The new president will turn to facilities and say ‘Make It Happen’.  It is because of this new president that the building whose doors I could not open last year now have an electronic opener.  I wrote several emails to different people, and nothing happened until this summer when the new president came in and the dean of students – my wonderful dean of students – told him about the access problem.  (yes, I know, getting ahead of myself – I’ll get back to this in the next entry).

It is very, very easy for accomodations to go wrong.  I’ve already mentioned the issue with my student housing.  I have also had problems with improperly written letters.  In both cases, the physician in question wrote that I requested an accomodation.  Ha bloody ha.  Neither of those were worth the paper they were written on, and neither of them did a damn thing for me.

The long and short of this is that while public entities are legally mandated to make accomodations for persons with disabilities, they are difficult to get and harder still to get tailored to your needs.  If your letter from your doctor is less than perfect, you can be denied accomodations simply because your letter does not prove you NEED them.  It’s utterly ridiculous, but it is absolutely true.

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