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, January 30, 2015

Response on Stem Cell Therapy

This is a response to a question I was asked. Here's the question.
Dear Alyssa, Greetings from India I found your blog while I was researching about special schools in China. I enjoyed reading your posts. I wanted to know your opinion on stem cell therapy for autistic individuals. What are your thoughts? Do you support it? Do you think its useful, not just in terms of autism but also for other neurological disorders. I would love to know your perspective. Love, Avantika
The short answer is that I don't support stem therapy "for autism"  (it makes no sense) but I do for people with conditions where stem cell therapy makes sense (some heart stuff, liver stuff, sometimes Crohns) who are also autistic.

There's a few different opinions that are all part of the long answer.

  • There's my opinion on stem cell therapy in general.
  • There's science side, is stem cell therapy even relevant to anything about autism?
  • There's my opinion on biomedical treatment of any kind "for autism."
  • There's my opinion on stem cell therapy for other reasons on people who happen to be autistic.
Anyways.
Stem Cell Therapy in General

My opinion on stem cell therapy in general is that it's still pretty experimental, but there are things it's been shown to work at least some with. It's used for some liver stuff, some heart stuff, some neurodegenerative stuff, osteoathritis, and Crohns. What all these things have in common, so far as I can tell, is that adding new cells that work like patients and doctors expect them to work helps with whatever the patient doesn't want their body doing. 

Some people have ethical issues with stem cell research and therapy for various reasons. As a sciency person, I know that most of those concerns don't even apply in quite a few stem cell areas (adult stem cell lines and umbilical lines have nothing to do with abortion, fetal lines coming from "spare" fertilized eggs after in vitro could become people if implanted but it's also not abortion, and I'm pro-choice anyways.) So I think stem cell research and resulting therapies are really cool, as long as they 1) are working towards a goal that the person being treated supports (not a parent, not a doctor, not a caretaker, the person being treated) and 2) there's scientific reason to believe that it can (help) accomplish the goal. The amount of evidence needed is less for treatments that the person being treated knows are experimental, like as part of a study, and more for stuff that we're saying is known to work. Which level of evidence a person being treated wants before they agree to it (and there has to be consent here) is up to the person.

Relevance to Autism

Going back to what the things being treated have in common, these are conditions where adding new, healthy cells can help with whatever the problem is. Autism does not fit the bill, even a little bit. Even if you hold with the idea that autism is somehow terrible and reducing "symptoms of autism" is the holy grail of treatment, the relevance of stem cell therapies to autism itself is doubtful. Some evidence suggests that we've got extra brain cells and connections in comparison to neurotypical expectations, among other things. 

This isn't a statement about stem cell therapy for autistic people who could benefit for other reasons, like if an autistic person also had Crohns or osteoathritis or any of the other stuff that's getting successfully treated with stem cell therapy, the question would be about relevance to that condition rather than autism.

But no, stem cell therapy is not relevant to autism.

Biomedical Stuff for Autism

Biomedical treatments "for autism" are generally pretty confused about what they're supposed to be treating, how it's supposed to work, and everything in between. Stem cells "for autism" don't look like an exception here. 

At best, such treatments are aimed at reducing discomfort that we have for other reasons (like the fact that autism and epilepsy can occur together, autism and autoimmune stuff can occur together, just by sheer probabilities, unless autism and condition X are not independent (having one affects the chance of having the other) they will occur together for about 1% of people with condition X.) Those treatments would actually help with the condition they're properly meant for, and make autistic people who have that other condition more comfortable. Often, our being in less distress is wrongly taken to mean that we are less autistic, and so people decide that this treatment now reduces "autism." For an autistic person who also has any of the stuff that stem cell therapies are actually good for? The relevant form of stem cell therapy could go here.

At worst, such treatments are actively abusive and have no reason to work. Bleach enemas, chelation, chemical castration, and a lot of other "biomedical" and "alt med" things people do "for autism" go here. If the autistic person in question doesn't have anything for which stem cell therapies are actually relevant, then stem cell therapy may well go here.

Regardless, treatments "for autism" are also rooted in the idea that autism is wrong or lesser, while neurotypicality (or being able to fake it) is ideal. That's directly opposed to the neurodiversity paradigm, so the idea of any treatment "for autism" is not high on my list of good things. 

Rather than trying to make Autistic people be "less autistic," I support giving us the treatment and tools that help us live better lives as Autistic people. If we've got any stuff going on that's causing us problems (I've got asthma, for example,) then treating those problems is just as good an idea for Autistic people as it is for those lacking autism. People tend to prefer feeling good to feeling sick, after all. The problem is when people conflate "feeling better from other stuff" with "less autistic." We're not actually less autistic, and less autistic isn't actually a good goal anyways.

I've talked a bit about what education that's based in teaching us to live well as autistic people could look like, but it's so unusual that finding anything like that is tough. That's also not particularly the point of this answer, but if you're interested, here are a few:

Stem Cell Therapy (when the person is also Autistic)

I don't see how this is different from stem cell therapy when the person isn't autistic. If someone has a condition where stem cell therapy is actually relevant, them being autistic isn't a counter-indicator.

Thursday, January 29, 2015

Scholarships and a Call for Artists

The Society for Disability Studies Neurodiversity Caucus (SDSNDC) is running some scholarships to get people to the Society for Disability Studies conference who otherwise wouldn't be able to get there. Part of funding those scholarships is an art sale, which is what this call is about.

Logistics:

  • Artists in this sale can choose how they wish to keep for themselves and how much to donate to the neurodiversity caucus, with a minimum donation of 50%.
  • For price, include the price that you want to receive AFTER your donation. For example: If you want to keep 50% of the funds you raise, price your necklace for $15 and it will be sold for $30. You receive $15 from that sale.
  • Artists will need to be able to ship things via USPS or UPS or offer digital/downloadable copies.
  • How shipping costs are handled exactly isn't certain yet. The aim is that artists will not pay shipping in the end, though artists may have initial/up-front shipping costs.


If you're interested in selling art through this fundraiser, please fill out the form below and send emails to sdsndc@outlook.com by FRIDAY, FEBRUARY 6.

Artist name:
Number of pieces for sale:
Name and price of each piece:
Percentage donated to SDSNDC:
Any other useful info:

Please attach JPEG photos of pieces. These will be uploaded to the site were the art will be sold.

I plan to sell some hand printed greeting cards in this fundraiser, and I plan to use my artist portion towards getting myself to the conference. My cards come with envelopes, and are 4.25"x5.5".
An assortment of hand-printed greeting cards I make, all with geometric designs on them. There are several different colors of card and of printing.

Wednesday, January 28, 2015

Snow day

Yesterday (Tuesday) was a snow day for me. It was a good day off, near the start of the semester, and I got things done. I also had time to hang out with my housemates (I live in what's basically an engineering frat house by another name.)

One of the great things about the house I'm at at school is that there's so many study abroad students here. So there's people who're seeing snow for the first couple times (this isn't the first snow of the season, just the first snow day.) There's people who've seen snow, but never had enough to build a snow man.

So guess what's going on?

Yup. House snowmen.

It is very cool.

There's not been any loss of electricity. Roads are closed, and there was a lot of wind, and there is a lot of snow. Cancelling classes and telling people to stay home was the right move here. But once we've decided to stay put? It's a good day. A calmer, slower day, with not much going on, and a good day. Today's going to be much the same, I think. Classes are canceled again, because everything is still snow.

Tuesday, January 27, 2015

Remember

Content note: This is basically about the Holocaust.

It's the international day of remembrance for the Holocaust. And my mom's side of my family came over to the USA during that time, leaving because we are Jewish and because being Jewish in Germany at that time was very, very dangerous.

My great-grandfather was among those taken on the Night of Broken Glass. He got out, after, both from the camp they took him to and from Germany.

Did you know that to immigrate to the United States, you often had to have someone who would vouch for you and promise to provide for you for the rest of your life, if necessary? Someone did that for him, and then he worked, until he could bring over his wife and two sons. The younger of those two sons is my grandfather.

Did you know that at the time, you could enter Shanghai without a visa, so long as you had the money to get there? There was a ghetto in Shanghai, but unlike the Warsaw one, the Jews who lived in the Shanghai ghetto lived. At the time, it may well have been safer to be Jewish in Shanghai than Chinese in Shanghai. (Shanghai is not far from Nanjing, or Nanking, depending on which version of the Anglicization you're using. Really, it's 上海 and 南京. If you've never heard of the Rape of Nanjing/Nanking, that's what I'm saying Shanghai was located pretty close to. By train, it's about an hour and a half.)

Did you know that the temple they made in Shanghai during that time was used for a Bar Mitzvah in the last few years? It's mostly a museum now, but there is a Torah there, and it can be used for services.

Did you know that the first deaths in Germany began after a petition for the legal ability to kill a disabled dependent?

Did you know that when concentration camps were liberated, gay people were not always liberated, because homosexuality was considered a crime?

There's a lot that people tend not to teach about the Holocaust, that people remember less. This is always so with history- today, I ask you to remember some of what is thought of less.

Monday, January 26, 2015

Notes on The Access Principle

More of "Alyssa reads a thing, and then sie posts the notes sie took."

This time the book is The Access Principle: The Case for Open Access to Research and Scholarship.

Citation is:
Willinsky, John. The Access Principle: The Case for Open Access to Research and Scholarship. Cambridge, MA: MIT, 2006.
 

And off we go!

Willinsksy’s access principle is that “a commitment to the value and quality of research carries with it a responsibility to extend the circulation of this work as far as possible, and ideally to all who are interested in it and all who might profit by it.” (5)

Doing good for a discipline and for other researchers by increasing the accessibility of work and doing well for one’s self by increasing impact both push academics towards open access.
Open Access “opens a new world of learning to those outside the academic realm, to dedicated professionals and interested amateurs, to concerned journalists and policymakers.” (33.)

“The exclusion of women and members of certain racial minorities from scientific education and the scientific professions constitutes not only a social injustice but a cognitive failing. Similarly, the automatic devaluation in Europe and North America of science from elsewhere constitutes a cognitive failing.” (Longino 132.)
That is, even for academics who are not concerned with the justice aspect should concern themselves with exclusion of certain groups from sciences (and other disciplines as well) because it is a failing in how knowledge is created and it reduces the quality of research overall.
Longino, Helen. 2002. The fate of Knowledge. Princeton: Princeton University Press. 132. Qtd in Willinsky 34.

Many academics support a push towards open access scholarship, allowing more people to read (and often, cite) their work. Citation counts and other measures of impact often increase when a journal becomes open access.

There are reports that when a journal moves to an open access model, either delayed or immediate, it may receive a significant increase in submissions- cite ALSO
Lossius and Søreide: Open access publishing: a girder in the success of the Scandinavian Journal of Trauma, Resuscitation and Emergency Medicine. Scandinavian Journal of Trauma, Resuscitation and Emergency Medicine 2011 19:7.

NOT directly from book, but thought of while reading: If editors and organizers value the increase in submissions that open access may bring, open access to calls for submissions is also important. Using the definition from the Budapest Open Access Initiative the only barriers to open access work are those “inseparable from gaining access to the internet itself,” which cognitive access barriers in the calls for submissions are not.
(citation: "Read the Budapest Open Access Initiative." Budapest Open Access Initiative. 2002. Web. <http://www.budapestopenaccessinitiative.org/read>. )

Find Haefeli, William. 2004. Cartoon. New Yorker, July 12, p 83. “Please don't be offended if I consult other sources of information.”

Public access to scholarly work typically adds little or nothing to the online publication costs, but it does increase readership, impact, and name recognition for the journal. (Writing so that everyone can understand calls for submission may be a bit more resource-intensive.)

At any rate, waiting for the [digital] divide to be closed somehow is a poor excuse for the academic community's not doing what it can now do about the inequitable distribution of access to research and scholarship. [Both reading and creating!!!] Critiques of the digital divide in hardware and software lose some of their sting if the authors are doing nothing to ensure that their own contributions are being made freely availale online and not part of an information divide. (112.)

With increasing public access to scholarship, public engagement increases. Ordinary citizens become involved in the process of research, not just reading the results, with the public helping to track the spread of disease and (cite and link Big Think article) analyzing tumor samples.

On the topic of the environment, Fischer writes, “Instead of questioning the citizen's ability to participate, we must ask how we can interconnect and coordinate the different but inherently interdependent discourses of citizens and experts” (45.) If this is true generally for people, the environments we live in, and how best to fix problems within our lives, then it only makes sense that it is still true specifically for disabled people, the environments we live in, and how best to fix the problems within our lives. Rewriting to this specific context, we get. “Instead of questioning the disabled person's ability to participate, we must ask how we can interconnect and coordinate the different but inherently interdependent discourses of disabled people and experts.” In both cases, the supposed experts have much to learn from the people whose problems they claim to be expert in.
Fischer, Frank. Citizens, Experts, and the Environment: The Politics of Local Knowledge. Durham, NC: Duke UP, 2000.

“Enabling people to play a greater part in the research that directly affects their own lives can lead to better science.” (120.)

In astronomy, collaboration between amateurs and professionals has already produced valuable results and valuable observational data which professionals then further analyzed. Non-professionals have also contributed significantly to work in linguistics, lexicography, and botany.

“It may well be that the very independence of scholarship, which adds greatly to its value in the struggle for human rights, has rested for too long on its relative inaccessibility. But academic freedom needs to be based on more than the fact that so few have access to what is being done in freedom's name” (153.)

In arguing that public rights to know and rights to philosophy support the case for open access, Willinsky specifically does not ask scholars to write for the potentially much wider audience they could acquire.[cite here] Under certain circumstances, however, I do. The main take away points of articles directly impacting on people's lives should be summarized such that readers can understand those impacts. Calls for contributions on topics that are about people's lives or directly impact peoples lives should be written so that people can understand what's being asked for and respond.

Want to find:
  • Directory of Open Access Journals
  • The Effects of Open Access and Downloads (‘Hits’) on Citation Impact: A Bibliography of Studies
  • The Core Metalist of Open Access Eprint Archives: opcit.eprints.org/explorearchives.html
  • African Journals Online program
  • Open Journal Systems