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How Much Disclosure is Enough?

Posted by Aspie Girl on August 24, 2009 at 10:07 AM

I will be starting graduate school in about a week. I have recently had to deal with the disability services at the university that I will be attending. I don't require much in the way of accomodations, but it turns out that what I do require is causing a bit of a fuss. It has been recommended that I have a private office space because of my sensory issues and tendency to talk to myself while reading. I wouldn't have thought that this would be that huge of a deal at the graduate level, but it is turning out to be somewhat of a nightmare. It isn't that people don't want to accomodate me, it is getting them to understand why accomodations are in order. Naturally, I don't want to disclose more than I have to, but it turns out that I am having to disclose more than I really wanted to.


In theory, when one deals with disability services, a minimal amount of disclosure is required. Generally, a letter is sent out stating that disability services is in possesion of documentation to support the requested accomodations. In my case, this wasn't enough. The folks in charge of allocating space at the university as well as my department of study ended up requesting the specific reasons for the request. This is upsetting to me, to say the least. Graduate studies are serious business. I don't want them thinking that I am somehow less than capable. As anyone who has ever been to graduate school can attest, having the faculty doubt your ability can be damning, to say the least. When I saw the letter that was sent out to the building explaining the specific reasons why accomodation was needed, it read like I am some sort of basket case. The mental image generated by their description of my particular areas of disability leed one to wonder if I am even fit for a university setting in the first place.


I startle easily. I have significant issues with focused, sustained attention and am easily distracted by sounds and movements that would be considered reasonable to most typical individuals (i.e breathing sounds, chair shifting sounds, paper shuffling, etc.). Most sounds that would be typical of a shared office setting would result in my being unable to focus and study. I could wear headphones to eliminate sounds in my environment, but this would generate a good deal of anxiety for me. I tend to worry a lot about what others may be thinking about me since I am not so great at reading peoples social undertones. In addition to the distractability issues and the social anxiety, I also have a tendency to talk to myself while I am reading or assimilating large amounts of information. This could be distracting to the people around me, but it is necessary for me to take in and use the information that I am studying.Ugh..... Did anyone happen to notice that I had a 3.87 GPA in the last program that I attended? That I have lecture experience and was the head teaching assistant in my last program? Probably not. They are more likely left wondering if I faked my application!


In all of my past experiences with university course work, I have actually never had to contact disability services for accomodations because I have been very fortunate. A private office space was a simple request that more or less went without question. I didn't need to prove anything. In the past, I have just mentioned that I have significant "sensory issues" that are documented and I have subsequently been allocated space in a dark, dusty unused room in the basement. The accomodations haven't been glamorous, but they have been functional. In this current situation, I have been put in a position where I am being made to feel like others think that I somehow feel that I deserve unfounded special treatment. This couldn't be further from the truth. I have actually been sent an email explaining that standard procedure mandates that there be four graduate students to a single office and that my request will set a precedent. The entire situation has left me wondering, "How much disclosure is enough?" I can understand and appreciate that providing documentation to disability services is necessary in order to help one identify what accomodations are necessary and to also prove the medical basis for accomodation, but how much information should individuals outside of that office be given? At what point am I disclosing too much? The university has a whole department specializing in the special needs of students with legitimate and documented disabilities! Shouldn't the university as a whole trust the discretion of the department they enlisted to screen the validity of an individuals needs and the resulting accomodations?



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6 Comments

Reply Leith
06:53 AM on October 27, 2009
I am shocked about your problem with the disability services. Here in New Zealand
(specifically, the University of Canterbury) one of our aspie members has had great help from the disability services, given his own private study room and help with applying for more flexibility with his courses etc. You could always go into the room for 4 and drive them nuts, but that is unfair to all of you. And it should not be your job to educate the "professionals". In this case, however, I think you might have to!
Reply Aspie Girl
10:43 AM on October 27, 2009
Leith, I think the disability services department helps a lot of people. I don't really think that they are the problem, but rather the rules surrounding disclosure. It seems that the information should not have to go past the office of disability services. If my disability is not visible, then why make me reveal it to those who would otherwise not see it? I think this is what upset me the most. I didn't think that I would have to explain my self more than once, so it leaves me wondering how many times I would have to explain if I were blind, for example. This is not to make light of blindness, I am just trying to illustrate my point. I could consider myself fortunate to have an invisible disability if I didn't have to explain it over and over and over and over and over. You get the idea.... :-)
Reply maji
03:54 AM on December 18, 2009
I feel your frustration, Aspie Girl.
When I started proofreading at a paper, I felt driven up the wall with the constant chatting while working. When I complained, group leader said "Oh, so you cannot work and talk at the same time?" I felt better that I told them off; now I am able to listen to them and work but sometimes I lose track of the conversations and say odd things when commenting on what I heard. Usually they go quiet but sometimes they actually get my "jokes" and straight talk. Humming is my habit and I do it unconsciously. I sometimes wonder what people think about my choice of music but one cannot please everybody
I know that Uni's allow extra time to students but that also has to be okayed by a doctor..
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Reply Melody Maker
07:09 AM on January 11, 2010
I am a post graduate student in disability studies and do most of my work online- the one course that I do have to do in class, I have asked for assistance. Because it involves computer work I can't be moved to another room so I bought the program and installed it at home then found myself a tutor who has experience assisting her own children with learning disabilities. I put myself on the list for a Uni-approved assessment and keep in touch with my lecturer, the Head Lecturer and the Head of Department as required. About the disclosure- I have come to realise that NTs require this so they can share information with each other because they value group decision making via consensus and that's why they use terms such as 'keep me in the loop'. If the disability liasion unit knows more than other academics involved then it becomes a 'he said she said' thing amongst the NTs as they try to figure out how to help us. Because they are not great with interpreting ASD that's why they need to share the info. With other people with disabilities eg. who have seeing-eye dogs- there is greater awareness in society and less discussion needed for them to come to a consensus about what is required. They can say "oh we've seen this before, how about we offer this" more often than not. We are different- our needs are more intangible and of course different from person to person. What is obvious to us is not obvious to them. They need all the info they can get. I just give it to them- in fact my first email had "please pass on to anyone who needs to know" at the bottom of it and they thanked me for my candour and it has opened doors I never thought would open. I feel very supported as a result.


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