Note For Anyone Writing About Me

For anyone who wants to write about me
I am an Autistic person. I am not a person with autism. Don't call me one. FYI, also not Aspergers. The diagnosis isn't even in the DSM anymore anyways.
My name is Alyssa, I'm a triple major in mathematics, mechanical engineering, and Chinese. I'm currently studying abroad in Tianjin. I have an About. I'm Autistic. I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Friday, May 15, 2015

Yes, That Too Acceptance. Love, and Self-care: #AutismPositivity2015

I have been writing less on my blog since... well, ever since I left for China at the end of August 2013. Spending an academic year at a university that really, really did not want me to be there was extremely draining, and I've already written a lot of things on this blog. I'm not really out of things to say, because there are always new ideas and new connections and new events, but I'm low on energy to say them here, so I am posting less often than I used to. (I used to post every day, sometimes multiple times a day, and that hasn't been the case since 2013.) 

That's OK, and deciding that it's OK is part of my accepting my limits and taking care of myself, which is this year's theme.

I've also been using some of what I write for academic purposes. I've done some short fiction, and this past year I was in a capstone engineering course that involved 50+ page reports at the end of each semester. That's a good bit of writing. I've also been working on a chapter for a book, which is currently at 30+ pages, and conference presentations, and I've been reading and taking notes for multiple projects. I've got papers and chapters to write, and will continue to, and if I want to be making a living, I'll need to be using my writing for places that help with that goal. 

In a very literal and physical sense, earning a living is required in the current system (and that's not an endorsement of the system, just an acknowledgement that to survive, I need to exist in it) so prioritizing placement of my writing in places where I get compensation is kind of self-care, in a physical and pragmatic way. 

Not so much choosing to write things that would be palatable to the mainstream. I don't do that so much, because writing things I disagree with to survive is survival but not self-care. Ensuring that I have the resources I need to live through placement is a different thing than getting resources by silencing myself or others, and only one of those am I talking about here.

And you want to know what else is self-care? Using my AAC device when I'm tired and find it easier to type than to speak, not just when speech is completely gone. That's self-care, and it's something I've been doing, with friends and at school. I'm glad I'm doing it. Pushing for normalcy for the sake of normalcy is kind of the opposite of self-care, and I've had enough of it.

Saturday, May 2, 2015

Late for Blogging Against Disableism Day

Disableism/ableism seem to be pretty much the same thing, so far as I can tell, in case anyone is familiar with one or the other. I think it might be a regional thing? Both are about all the kinds of discrimination and stereotyping and barriers that disabled people have to deal with.

I think what I want to talk about today is related to passing (or not passing) and outing myself and what happens after, when people say "I would never have known!" or "You don't need to tell me that!" or "I'm so sorry!"

Because... there is ableism there, and it's the most recent example that's coming to mind. That's a big improvement over last year, when I was struggling with a school that was pretty actively trying to block things I was doing and made attempts at preventing me from coming and then later at having me sent home because I'm autistic. That was really blatant and nasty, and I'm glad to be out, and in comparison what I'm dealing with now- well, let's just say I'm in no hurry to go back to last years situation. Here is good. Now is good. Not perfect, hence still having something to talk about, but pretty good.


Because this is for Blogging Against Disableism Day, or BADD, I figure there might be some folks reading this who haven't read anything else. I'm Autistic, I usually can and do speak at least some, but not always. When speech is either non-existent or not doing everything I need communication for, I write and I use text to speech. I'm also a graduate student in math and a teaching assistant in math, so I work as a math tutor and teach a section of precalculus.

Last Thursday (bit over a week ago) I had two exams in a row, and then two more classes and work. By the end of the exams, speech was not working, which for me is not even a little bit of a surprise. I went to my next class, graph theory, and I mostly didn't need to talk. I wrote a little bit to my classmate who sits next to me, but mostly language wasn't needed. In between that class and the last one of the day, functional analysis/operator theory, I was in the classroom (both classes were in the same room) and one of the engineering students in operator theory came in. He tried to talk to me beyond what I could handle with gestures, so I went to the whiteboard with one of my markers and explained that I couldn't actually talk with my mouth right now and that it was related to my being autistic.

"I'm so sorry."

Why are you sorry? What is there to be sorry about? In that situation, I can't think of a reason for him to be sorry that doesn't involve ableism.

The assumption that disability is something to be sorry about, something to feel sorry for, is ableist. (Someone not being a fan of their own disability, or being angry about the barriers they face, is very different from someone assuming that we must feel a certain way about our own disabilities.)

When I tell someone I'm Autistic, I don't want the first thing I hear in response to be that they are sorry. I really, really don't want to know how they think I should feel about my autism. I'm not sorry. Why should they be?

Monday, April 27, 2015

When I Am Using Text To Speech

I've written a bit about my use of text to speech software as a form of augmentative and alternative communication. On my laptop, I have eSpeak which does English pretty well and Chinese poorly (but extant!) On my iPad, I have Proloquo4Text. I really like having the ability to type and pull saved phrases, because there are phrases I use frequently and there are phrases that I might not remember I have the option of using unless I see them. (Setting boundaries of No, I can't/won't do the thing or asking for help are the parts where I might not remember I can do that.)

There's some articles around on how to do communication with AAC users, which is cool and a nice starting point, but folks are going to have different preferences related to how they use their AAC and how others interact with them. Thus, I'm tossing my personal set out there, in no particular order.

  1. When I am typing, this is not always equivalent to "gathering thoughts," but it's usually close. If you were talking before I started, go ahead and finish. This isn't me starting to talk yet. Just don't do "I see that Alyssa has started typing so I will now start talking" and we're probably fine.
  2. As a corollary, since we're not treating my starting to type as the same thing as me talking, we're all the way not treating it like that. If I start typing before you finish talking, This is not me interrupting you. It's not me interrupting you until I hit "speak" on whatever I wrote while you're still talking.
  3. There might be times when I interrupt. Just like I might when I'm speaking with my mouth. It happens! Especially if there's an emergency, but also because in natural conversation people do sometimes interrupt each other.
  4. Once I hit speak, if you start talking before the software finishes, you are interrupting me. Are there times in normal conversation where that could happen and be OK? Sure, and I'll judge it the same whether I'm using my mouth or typing. But let's not pretend that it's not happening. (The existence of a replay button on Proloquo4Text means I may less annoyed by an interruption than if I were speaking, unless I have reason to believe you're only interrupting because I'm using AAC, in which case I probably think you're being terrible.)
  5. If you wouldn't finish my sentences when I'm speaking, don't try when I'm typing.
  6. Unless I am turning my device around to show you what's on the screen and you're moving it to see it better (I don't always know what angle is best for showing someone) don't touch my device. It's doing the job of my mouth/vocal cords/etc.
  7. Talk to me, not around me.
Long story short, there's some practical questions like "When can someone else touch the device?" and "What does "starts typing" count like?" but we should be looking at a fairly typical conversation. 

Sunday, April 26, 2015

Doing What Works- Academia Edition

Making notecards for research papers seems like a pretty accepted thing. When they taught us how to do research papers in high school, they made us do them (and handwritten, too!) When my friend, a history major, was writing papers for college, he made them. His were handwritten. Quite a few of my friends make them too.

As soon as I wasn't required to anymore, I stopped making physical note cards. It's not because I don't think they're a good idea. I think having note cards is great. The problem is making them. My handwriting is messy enough that handwritten note cards don't actually do me much good, and writing starts to hurt fairly quickly so I'm not inclined to make cards, especially when they won't help much due to the messy handwriting issue.

Instead, I've been typing my notes. This is useful because it's hard to lose a digital copy of my notes. It's also useful because I can read things I typed later. It's easier than handwriting, because typing doesn't make my hands start to hurt. It lets me post my notes publicly, which I do in the hopes that they are useful to someone else. (I've got friends who do academic stuff, and if my notes about a source help them decide if reading it is worth it or not, or if having my notes lets them spend less time going through the source once they have it, this is great! I like it when academics post things publicly and it makes other people's lives easier.)

Because technology exists and can do cool stuff, and because I know printed note card size flash cards exist, I recently looked around for ways to print directly onto index cards. Lo and behold, it can be done! Apparently, as long as you make your paper size right in your document and in the print step, most printers can print to index cards, either 3"x5" or 4"x6".

Now I can get the benefits of both digital notes and legible notecards! It's a bit of a process, but way faster than trying to read my handwriting.

  1. Take notes on my laptop, typed, regular letter paper sized document.
  2. Save as "Notes" for the source.
  3. Save again, as "Note cards" for the source.
  4. Change the page size to 4"x6" (big index cards) and the margins to 0.5"
  5. Copy the citation for the source to my clipboard.
  6. After each note that I want a note card for, paste the citation and then insert a page break. On my copy of Open Office, ctrl+enter does a page break. (I don't need a physical card for "Also read this source the author cited")
  7. Load up the index cards in the printer and print!
  8. Sort the cards by project they relate to. If a card relates to multiple projects, I can print multiple copies of that page so that a card for it goes in every project it relates to.
I do have a decent bit of overlap between projects, too. My projects (in varying levels of activity) are below, and purple lines connect projects that currently have at least one shared note card.
Image description: Project titles in boxes connected by lines representing shared note cards between the projects. The listen projects, left to right and then top to bottom, are 

  1. "Neurodivergent Philosophy of Science," 
  2. "Rethinking Engineering Design and Disability," 
  3. "Cognitive Interpreting Application," 
  4. "Theory of Mind Inside Out,"
  5.  "Disability Studies for Engineers Course Creation," 
  6. "Cognitively Accessible Language (Write so the folks you write about can understand)", 
  7. "Erasure of Queer Autistic People," 
  8. "Queer Because Neurodivergent is STILL QUEER."
Using the numbers as shorthand for the projects, the following pairs are connected:
1 and 2, 1 and 4, 1 and 5, 2 and 3, 2 and 5, 3 and 6, 4 and 6, 4 and 7, 4 and 8, 5 and 6, 7 and 8.

Tuesday, April 21, 2015

"The Myth of Clinical Judgment" notes

The next episode of Alyssa reads a thing and shares notes is for "The myth of clinical judgment" in the Journal of Social Issues. Citation:
Biklen, Douglas. "The myth of clinical judgment." Journal of Social Issues 44.1 (1988): 127-140.

Biklen notes that people with have historically faced exclusion from education, social rejection, limited physical access to society, and segregation within institutions, and that typically people facing such treatment would be considered a marginalized minority.
“Yet the more common tendency has been to view people with disabilities as (a) victimized by a disabling condition and (b) in need of treatment-- not of rights.” (128)

Officially, the appropriateness of educational and residential treatment, placement, and supports for people with disabilities is considered a matter for professional (clinical) judgement.

“The more severe the disability, the greater the likelihood that the person will be regarded more as a “patient” than as an object of discrimination. Indeed, identification as a patient would seem to preclude identification or status as an oppressed minority.” (128)
Note (from me, not Biklen) also that this still presumes a way of judging a spectrum of severity, from less severe to more severe. However, any such judgment will be socially constructed and is based against what society expects people to be able to do and how society expects people to look, move, and act.

Professions such as special education, psychology, and rehabilitation for people with disability work through individual assessment, diagnosis, and placement. However, the available options for professionals to place people with disabilities in need to be considered.

Biklen notes that the US government policy has been to avoid placement of people with disabilities in separate classes or schools without demonstration of benefits from the segregation and evidence that integration is not possible, not by administrative concerns such as equipment, specialists, or specialized programs.

“Educators expectations for student performance appear greater for students involved in useful and age-appropriate (and more integrated) rather than nonfunctional (and potentially more segregated) activities.” (132)
Oh hi, presumption of competence showing up more when we're not segregated.

In AY 1982-3, 68% of all children with disabilities were primarily educated in regular classrooms, 25% in separate classes within the regular education building, and 7% in separate schools or other environments (home/hospital) (U.S. Department of Education, 1985, p. 36.)
However, classifying by type of disability, we find that learning disabilities and speech disabilities are typically included while all other groups are more likely to be segregated.

State by state variation in segregation for students labeled with intellectual or emotional disabilities, as well as with multiple disabilities has been extremely wide. Because of the reality that state of residence has an extremely large effect on placement in a mainstream or segregated school, Biklen questions the assumption that placement is done by clinical judgment, despite the claim of clinical judgment. State funding for private school or institutional placement is a strong indicator of actual placement, as do admissions tests or lack thereof.

It seems that people with more severe disabilities get even greater benefit from integration and access to the community than people whose disabilities are considered more “mild.” At least, in terms of how professionals define improvement and benefit, but I'll take it because it favors “stop segregating people and claiming it's for their own good, dagnabbit.”

When examining patterns of residential placements and institution closure, factors such as Medicaid fund use, court oversight, bureaucratic concerns, jurisdictional disputes, public opinion towards people with disabilities, federal funding, availability of alternative placements, pressure to convert institutions for people with disabilities into prisons, and pressure from advocacy groups were found to have a greater effect than professional judgments.

Despite the professional authority supposedly in charge of many life aspects for people with disabilities, including who lives in group homes, who lives in instutions, and who is supported living in the community, the influence of other forces tends to have more importance than said medical/professional judgments. However, the primary factors still aren't the choices of the people with disabilities themselves.

“The solution to the problem of clinical judgement being overwhelmed by nonclinical forces is not more, better, and therefore more influential clinical judgement. Rather, the problem is in the current model of disability services, which treats questions that are both political and professional-- such as where and how people shall live or be educated-- as if they were purely professional ones.” (137)

“The conditions faced by people with disabilities are those that plague other minorities: social isolation, insufficient and unequal treatment, economic dependency, high unemployment, poor housing, and an unusually high rate of instutionalization. It serves the interests of neither professionals nor their clients-- indeed, it perpetuates a myth-- to ignore people's need for political and economic changes while offering them only clinical treatment. This seems particularly wrong and harmful when the treatment itself becomes an extension of political and economic disenfranchisement. Put another way, people with disabilities are more likely to achieve increased self-determination, real choice, and power if they cease being defined as clients whose future rests in the hands of professionals, and are instead recognized as a minority group.” (137.)