This is a transcript of the video
Alyssa Hillary SDS 2014 Neurodiversity 101, which is posted
on
Youtube as well as being my presentation at the Society for
Disability Studies conference.
I'm Alyssa Hillary. Because I'm in
Tianjin, China, you're getting a video of me talking instead of me
actually coming and talking, and I'm talking about neurodiversity.
Neurodiversity has a few things that
you could be talking about when you say this word. There's the
scientific fact that not all brains are the same, and in fact, no two
brains are 100% alike. Given the number of neurons and possible
connections in a brain, it's really
not surprising that no two brains are exactly alike. What would be
surprising would be if there were two
brains which were exactly alike. So that's the scientific fact.
Brains are different.
There's
also an activism and advocacy type movement. That started off as a
subset of autistic advocacy. It's sort of a civil rights movement
that started off with autistic people and has expanded. You can talk
about that with bipolar now, with ADHD, with dyslexia, with a lot of
the more common things that called learning disabilities. I've also
seen some related to Down's Syndrome, dyspraxia... It seems to be
doing fairly well in the UK, they have a Developmental Adult
Neurodiversity Association.
[Cut
to another shot, and there is a black box with white text above my
head which reads “I am now talking about paradigms. 3rd
meaning of neurodiversity)”]
Pathology
is a way of looking at how brains are wired. That's the idea that
there's one right, normal, or healthy way for a human brain, mind to
work, or a small range, where you're close enough, that's okay, and
that if your neurological configuration and functioning, and as a
result, your ways of thinking and behaving are substantially
different from this dominant stanard of normal, that is a sign of
there being something wrong with you. That's pretty much the default
way of looking at neurological differences at the moment, as opposed
to the neurodiversity paradigm.
There's
three main ideas for that.i
One, neurodiversity, the scientific fact, the diversity of brains and
minds, is a natural, healthy, and valuable form of human diversity.
Two, there is no normal or right style of human mind, any more than
there is one normal or right ethnicity, gender, or culture. And
three, the social dynamics that manifest in regards to neurodiversity
are similar to the ones that manifest in regards to other kinds of
human diversity, so race, gender, culture, sexual orientation. This
includes power relations like inequality, privilege, and oppression,
as well as the dynamics where when diversity is embraced, creative
potential and other good things happen in society.
And
for some definitions of other words I'm going to be using. There's
neurotype. This is culturally and socially constructed, in that no
two brains are exactly the same, but if they're close enough, they'll
probably be put under the same neurotype. Examples would be
neurotypical- close enough to the currently privileged “normal,
right, healthy” under the pathology paradigm, autistic, bipolar,
dyslexic, are all examples of neurotypes. The neurotypes that are not
“neurotypical”are considered neurominorities, and you can also
use neurodivergence or neurodivergent to apply to said neurotypes
that aren't neurotypical. So if you're autistic, or if you're
epilepticii,
or if you have ADHD, or if you're some combination of these, you're
neurodivergent, and you could also talk about those things as forms
of neurodivergence.
Along
the same lines as this neurodiversity paradigm and the privilege
relationships, there's also differences in how somebody behaving in
the exact same way will get constructed and viewed very differently
depending on the person's neurotype, and depending on the environment
that they're in. This is similar to how the same behavior across
genders or across cultures can be viewed very differently. A gifted
student... a student who is considered gifted and is now at a
high-level university who lies down on the floor at a club meeting is
generally going to be treated very differently than a developmentally
disabled person who lies down on the floor in their school. The
person who's at, say, MIT, is probably not going to get in trouble.
The person who's labelediii
as developmentally disabled is very likely to get in trouble. Or how
in many cases, a person who is labeled as autistic is also going to
be held to a higher standard or eye contact because of the
neurological differences that make it harder for us to do eye
contact.
If
this neurodiversity paradigm looks a lot like the social model of
disability, that's not a coincidence. The neurodiversity activist
movements and scholarship are very much built on broader disability
scholarship and activism, in that... for one thing, we are, under the
social model of disability, neurominorities are disabled. And we
recognize this, and we built and apply the way that the dynamics work
when its specifically a case of a neurological difference, as opposed
to a difference such as a mobility issueiv.
And. So. It's not a coincidence. We very deliberately have been using
broader disability (and yes, neurodiversity activists who are talking
about neurodiversity paradigm as opposed to groups which may, and
activists which may be simply moving the line of what's considered an
acceptable brain type rather than attempting to get rid of the
hierarchy) those who are attempting to get rid of the hierarchy and
are actually using the neurodiversity paradigm typically do recognize
that we are disabled and typically do recognize that our being
disabled has more to do with societal barriers than with our actual
capabilities and support needs.
And
similar to how disability studies in the broader sense will often
talk about representation in media, both because it reveals how
people are currently thinking and because it can influence how people
are thinking, neurodiversity activists and neurodiversity scholars
will talk about representation of neurodivergent characters in media,
both those who are explicitly labeled as such and those who, while
not explicity labeled, can easily be read as neurodivergent. The ones
who are being read that way but are not explicitly labeled tend to be
better representations than the ones who are specifically stated as
such due to stereotypes and stigma and pathologization of
neurominorities, in much the same way that a physically disabled
character will often be treated as a plot device rather than as a
full character. And much like this treatment of characters who are
disabled but neurotypical is very closely interrelated with how
characters... with how real disabled people are treated, these
connections can also be made when the disability is neurodivergence,
when it's a neurodivergent character.
[Shot
change again, volume decreases and it now looks like a selfie video
because it is one.]
When
using oral speech, I tend to go on tangents and miss things, so
addendums.
One:
In terms of history, a lot of people think of Jim Sinclair's piece,
Don't Mourn For Us, as being the start of the neurodiversity did not
get coined until several years later in an honors thesisv.
In its initial use, it was applied to a much narrower range than it
is currently applied to. Things change.
[Cut
back to being videoed from a distance, with higher volume.]
Addendum
two: Neurodiversity paradigm absolutely stands in opposition to the
societal pressures of pushing everyone to have one sort of mind or to
fake having that sort of mind, behaving like the neurotypical norm,
if they do not actually have that sort of mind. And we absolutely
oppose treatments chosen by others meant to enforce this sort of
conformity. We also recognize that these forces are not the same
thing as an individual choosing to do something that modifies how
their neurology or cognition work based on an individual preference.
These are different things. Even if one influences the other, and
they often do, they are not actually the same thing.
[Cut
back to selfie video and lower volume.]
Addendum
three is a quote from High Wizardry, a
young adult novel by Diane Duanevi
in the context of the creation of a new species:
"Dairine
would start making them different from one another. But they were
going to have to be different on the inside, too, to do any good. If
some danger comes along that they have to cope with, it’s no use
their information processors being all the same: whatever it is could
wipe them all out at once. If they’re as different as they can be,
they’ll have a better chance of surviving."
This
is, to some extent, the basic idea. It's not about one kind of
information processing, one kind of sensory processing being the
best, it's about needing to have as many different kinds as possible.
[Cut
back to being videoed from a distance and higher volume.]
Addendum
four, um, there's absolutely parallels between thinking about
neurodiversity versus pathology and social model versus medical,
charity, and moral models for disability, in that the medical model,
moral model, and charity model are all pathology types, and the
social model is not a pathology type. It puts disability as something
that's created by social forces, much like the neurodiversity
paradigm says that the issues people have based on being of a
different neurotype, such as by being autistic, have a lot more to do
with societal barriers and discrimination than with the actual status
of having different needs than what's expected of a neurotypical.
[A
black box with white text reads: “There is stuff that's hard. But
tech and teaching focusing on convenience for dominant folks instead
of helping with what we think needs to happen I society. So I still
say society is the bigger issue.]
Addendum
five: “Our minds are fine”, and “Our bodies are fine” are
just ways of moving the line of what's acceptable. “All minds are
fine”, “All bodies are fine” actually takes out the hierarchy
that put abled folk on top, and this is a much more effective way of
challenging ableism as a whole than just chosing a different subset
of disabled people as a whole to be thrown under the bus in an effort
to get rights for oneself, or to get better representation for
onesself.
When
we want to get out from under inequality, working together gives us
more numbers, and also, we're all disabled. We should not be throwing
each other under the bus. The way that physically disabled people are
treated when people assume cognitive disability isn't right when the
person actually is neurodivergent, and opposing that as the right way
to handle neurodivergence is very important.
[Speaking
ends. There is now a black screen with white text which reads:
I
want to thank Rita Kwan from American Council's Tianjin Flagship
program for helping me with the recording of this presentation. The
parts that don't look like iPad selfie videos were recorded in her
home and office, using her camera.
I
would also like to thank my classmates and teachers this year in
general. Considering that I'm apparently the first openly autistic
student at Tianjin Normal University, this year has gone very well.
This ha a lot to do with my classmates and teachers. Most of what
they're doing right really should be the default, but it's not and I
recognize that they're unusual. [I also loudly complain about the
fact that it's unusual.]
And
of course, I thank all the writes and activists and thinkers whose
work I'm building off. There are a lot of you.
If
you have questions for me, wnt to see more of my work, have ideas of
how I could be more accessiblevii,
or just generally want to talk to me, you can reach me at
AlyHillary@gmail.com]
ii Kassiane Sibley, the person who coined the term “neurodivergent” is
Autistic and epileptic. She created it because, “Autistic isn't
the only way to be neurologically interesting.”
iii I'm
saying labeled here because it's often the same kinds of people
doing the same kinds of things, for the same reasons, and the only
difference is what label other people put on it. Also, thanks to
Mel Baggs for writing about her experience with this on
Tumblr.
iv Sorry,
I mean mobility difference or mobility disability. This is why I
prefer writing to speaking.
v Judy
Singer's thesis, “Odd People In.”
vi I
do suggest the whole series, so long as it's the new millenium
edition e-books. Both editions have good characters who can be
interpreted as neurodivergent, but only the new editions represent
the canonically autistic character well once he comes along.
vii This
is for serious. I might need assistance doing some of the things
because of my own disabilities, but I will do what I can myself and
find help where needed.
