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


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.

About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

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 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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