Addition to library: And people still fail to get it, again and again.

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And People Still Fail to Get It, Again and Again

By a student who’s been fighting for accessible education for a long time.

Quote from it:

These things– accomodation, and related issues– are rights, not privileges. But even if I can acknowledge that intellectually, I’m so used to having to shut the hell up in order to get anything at all that my gut reaction when anyone gives me any kind of accomodation at all is fear– waiting for the other shoe to drop, waiting for them to decide I’m a horrible person who’s just making excuses and is trying to drag out some manipulative game to see just how much of a free ride I can get, and to decide I deserve nothing at all. I’m seen as some kind of puppetmaster, when in reality I’m the ones on the strings being jerked around at everyone else’s whims.

I don’t think people get it. I expect nothing. I expect nothing to be given to me. I expect to be called a liar and manipulator and an excuse-maker and to be told that the system owes me nothing and that I can sink or swim. I expect to be forced to plead, beg and grovel in order to get any kind of accomodations at school, extended deadlines and the like, and to be seen as a manipulative liar if I still can’t do it. I expect to be forced to beg like a dog for food, or water, or sanitary napkins, or the right to go to the bathroom, or similar things, and perceived as a childish brat who needs to be punished and taught a lesson. I don’t know how to communicate to people that I expect nothing, or how to stop them from believing I have a sense of entitlement, when in fact it’s exactly the opposite. The fact that I expect nothing doesn’t mean I should receive nothing, but it does mean I expect nothing, and people should take that into account when working with me.

I have to say I identify with all that. I don’t actually expect to be taken seriously or treated like a human being.

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8 responses »

  1. I take you seriously, Ma’am. You have educated me some, I think.

    As far as humans go, I think you are among the least dangerous and most worth keeping of that group of provably dangerous primates, the most dangerous monkeys on the planet.

  2. That pretty much sums up my experience with Disabled Students Programs & Services at College of the Redwoods — although, to be sure, they were extraordinarily ‘polite’ about it all.

  3. I looked at my transcript the other day and realized I’ve been trying to get this degree for twenty years now. *sigh*

    There are accomodations that could really help me but I can’t even bring myself to ask for them. The one accomodation I did ask for (being allowed to use a computer to take notes in a class where the professor forbade electronic devices) was an exercise in humiliation.

    I just found out from what other college students said, which led me to read my university’s disability statement, that I was lied to when I went to ADA for that accomodation.

    I’m considering coming out autistic when I apply to grad school (presuming I manage to finish this twenty-years-in-the-making undergrad degree, that is.) I’m tired of using “I’m sick” as an excuse for why I wasn’t where I was supposed to be or why I need an extra week to finish a paper.

    I don’t even know how one does disclose a disability when applying for school or work. And no one out there is making it very easy for me to find that out. I need some kind of written guide for this stuff.

  4. This isn’t particularly relevant to this post, but after going back and reading several of your other entries, I have something I need to make sure you’re aware of.

    You write about people patronizing you by saying things like, “You do that so well… (for an autistic).”

    I just want to clarify that any time I compliment you or your writing, what I mean to say is this:

    “You do that very well… for a human.”

    It’s true that to me, one reason your writing is so interesting partly because of the perspective you provide as an autistic person. But the ability you have to articulate your thoughts is refreshing compared to the vast majority of other writings on the internet, NT or autistic or otherwise.

  5. Sparrow: I suspect you’ll find that some schools do better than others. And, of course, even within the same school, some individual professors will have a more welcoming attitude than others toward disabled students.

    Maybe there is a difference in how Deaf students and Autistic students are treated (in fact, given that the whole concept of Autistic adults going to college and graduate school and requesting appropriate accommodations is probably newer at most schools than accommodations for deaf or blind students, I would guess that this may be unfortunately the case). However, I suspect that you might also have had the misfortune to run into an incompetent disability service program, or more than one, or incompetent staff. My own experiences as a Deaf student at George Washington (more recent) and at American University (a few years ago) were more positive than what you describe. I’ve also gotten accommodations as a student with attention deficit disorder at Gallaudet University, and things there were decent (though I was lucky enough to be in the social work department where the professors tend to be more comfortable with diversity, including diversity in learning style).

    A school with a decent disability accommodation program (like George Washington University) should have a web page targeted at disabled students to help them figure out what to do. (I’ve no clue what GWU would be like for an Autistic student there, but I know they do pretty well with Deaf students–I took two graduate economic classes there. And the staff there seem to be helpful. Check out http://gwired.gwu.edu/dss if you want)

    As a general search strategy, perhaps you could try looking around for the disabled students’ web site for any graduate schools you’re looking at. Screen out the ones whose web sites stink especially bad, and take a closer look at schools that seem to have more comprehensive information than most on their disablity web site and where the staff seem to have more extensive experience with a wide range of disabilities. Narrow down your possibilities that way, just as one starting point. Then, if you’re able to visit, consider setting up an appointment for an “informational interview” with the disability staff to get more in-depth answers to your questions, including the process for disclosing your disability to whom, at what stage of application, etc. (or if you can’t do it in person, maybe set up a phone session).

    This was pretty much what I did 20 years ago when I was looking for an undergrad program that would accommodate deaf students (except the web didn’t exist then, so I first screened schools on other criteria such as available majors and competitiveness, then I wrote letters to a few dozen schools to ask about their disability support services for deaf students including whether they would provide sign language interpreters. This was in the days before the Americans with Disabilities Act, so I had less legal protection then. I was able to screen out a lot of schools based on their responses, but I set up visits to the more promising schools that still also seemed interesting after I read more extensive information about them (about 10 or so). And, of course, I asked them to provide me with an interpreter during my visits. Schools that gave me lousy interpreters for my visit were crossed off my list. But a few middling to good options WERE left after all that extensive weeding out.)

    If a school’s disability program is any good, they SHOULD be used to students who either are diagnosed late in life (there are plenty of students with learning disabilities or attention deficit disorder, for example, who just aren’t identified until they’re in college) or who start seeking out accommodations for a known disability late in life (as in your case). Any school accustomed to students new to their own disability (or new to accommodations for same) SHOULD be prepared to work with you to help you understand how to go through the process for requesting accommodations. If a school seems reluctant to do this, then cross them off your list and move on to the next. Be persistent. I HOPE that things are better today than they were 20 years ago, but I did have to contact a few dozen schools to find even the small handful that seemed prepared to give me the accommodations I needed.

    Oh, and do have photocopies of your evaluation diagnosing you as autistic ready to go. Some schools MIGHT want to see a fairly recent one (I think it depends partly on the school and partly on the disability), but you can ask about that. (If a school simply refuses to answer–as opposed to simply not knowing and needing to look it up–then that can be one more school to cross off your list.)

    And it might help slightly widen your pool if you can make allowances for schools that seem to WANT to help but maybe don’t know all the answers off the top of their heads. It IS reasonable to expect a school to have a positive ATTITUDE toward welcoming Autistic students and figuring out how to provide the accommodations they need. But maybe some schools are simply new to Autism and aren’t sure yet what’s appropriate and what’s not, or exactly what resources are available. It depends on how much of a guinea pig you’re willing to be, if a school seems genuinely committed to making it work but seems (INITIALLY) clueless. Me, I usually feel more comfortable with schools that have some prior experience working with sign language interpreters, so I can’t blame you if you’d rather try finding a school already accustomed to working with Autistic students. As bullet says, nobody should have to beg for basic services and rights. And to that I would add that, ideally, when you’re seeking out an education for yourself, it also shouldn’t have to be your responsibility to provide a course in Autism 101 to clueless disability support services staff.

    All this is just my two cents, which you can take or leave. These days, a penny–or even a pair of them–isn’t worth much anyway :-) So it’s up to you, YMMV, etc.

  6. andreashettle: thank you for your advice. As for choosing a grad school, right now leaving this area is not an option so there is only one grad school I am applying to. Going someplace else would mean leaving the support that made the difference between the last twenty years of fruitless struggling and these last few years of actually making progress toward a degree.

    The only other option is to seek a distance degree but that is more expensive, both because the school here is one of the least expensive in the nation and because there is less opportunity for a fellowship with distance education.

    The grad school here awards D.A. degrees which are geared toward university teaching. I would be required to teach a certain number of classroom hours in order to get my degree (thus being guaranteed of entering the job market with education experience already.) That is not as likely with distance education. Since my goal is to be a university professor, distance education is not an optimal choice for me.

    There are some accomodations that would help me, but more than that I want to gain experience with disclosing in the workplace. I feel strongly that I can teach university-level classes but I will *have* to be able to disclose things – like telling my students that being faceblind means I may not know who they are by sight but that does *not* mean that I don’t value them as a student. And that I would appreciate it if they would identify themselves by name when they approach me, even if they’re certain I’ve recognized them.

    But in order to be able to disclose things like that in the classroom, there has to be that first disclosure and I’m starting to feel that making it sooner rather than later would be best.

    I think it would be best if I have experience with disclosing by the time I stand (or, given the health of my feet, more likely sit) in front of my first class of students rather than using them as my guinea pigs for learning how to appropriately disclose disability information.

  7. this is ot for this thread (i don’t know how to contact you by any other way), but i just came across a sad local story: a 60 year old retired teacher in a Palermo turned himself in after strangling his autistic son of 26. Some of the father’s quotes that were reported:
    “I’ve been trying for years to get him somewhere he could get help, but all the institutions always left me on my own. And on Saturday I just couldn’t take it any longer.”
    “We were going for a drive in the countryside. He began repeating a sentence over and over, and then started to fight, and to bite his hands. I snapped: I strangled him with a rope I had in the car.” Afterwards he drove straight to the police station with the corpse in his car.
    “I regret it now. It all happened in a raptus on the spur of the moment.” He’d raised Angelo alone for years – his wife had given up a long time ago. “He was incredibly strong and often violent – with us or towards himself. I slept in the same bed with him in order to be able to keep an eye on him during the night. I had no help.” The only medical assistance he had ever received was a prescription for psychoactive drugs, but that hadn’t solved the situation. “I was abandoned by the institutions. I’d been trying to find a specialised center for years, but Angelo was always rejected.”
    “I am devastated. I still feel Angelo right next to me.” He’s been released from custody, and the investigation will likely go no further than convalidating the father’s raptus.

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