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.
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.