Bitch Radio: Disability at the Digital Frontier
February 24, 2012
Anna : Hi Bitch readers I’m Anna Hamilton, Annaham, at least on the internet, I am
creative professional type person. I’m a writer, blogger, and occasional cartoonist as you
will see in this article. I just graduated with a master’s degree in women’s studies. It’s
exciting. So that’s me.
s.e.: Hi I’m s.e. smith co-author of “Disabilities on the Digital Frontier.” I’m a writer,
editor, and agitator depending on the day and sometimes I’m all three things at once.
That’s why it’s so nice to be working with the folks at Bitch magazine because I get to
say “bitch” a lot.
Kjerstin: We bleep it out every time you say it actually….just kidding. Great, well for
people who don’t subscribe to Bitch magazine or who haven’t gotten their copy yet and
read the article, would you give an overview of “Access and Praxis: Disability at the
Digital Frontier,” and what it’s about and maybe what prompted you to write it in the first
place?
Anna: I’m so bad with summaries, but I can try and s.e.—if I miss anything you can jump
in. Well, our article is about the pros and cons of disability on the internet and what the
history is behind it. I think a lot of people, a lot of able-bodied people who might not
spend time in anti-oppression online spaces or “social justice” spaces, might not know
that disability centered spaces online actually exist and that we also cover sometimes
when disability spaces and feminist spaces have, for lack of a better term, collided.
s.e.: A lot of our inspiration for the piece came when Annaham and I met in 2009 when
we started Feminists with Disabilities, For A Way Forward with a lot of other disabled
bloggers. And something we were struck by and the reason why we started Forward was
because a lot of feminist blogs weren’t covering issues of disability, and when they did
come up, comment threads often went bad really, really quickly. “Well, I don’t
understand why you are bringing up disability, this is a feminist website and disability
doesn’t have anything to do with feminism.” Or, you would have disabled people coming
in and saying, “This is why I can’t identify as a feminist because feminists are all ableist
and horrible.” We really wanted to explore and probe at this huge gap between disability
and feminism when so much evidence suggests that disability is a key feminist issue and
should always be a part of feminist discourse. Not least because twenty percent of the
population identifying as disabled there has got to be at least some women out there
probably, possibly among that number.
Kjerstin: Why don’t we talk more about what accessibility means online because it seems
like there are several different meanings that it has when it comes to online spaces. What
are some of those different meanings of accessibility?
s.e.: That’s one of my pet subjects! Accessibility in the most literal, basic disability sense
is when a disabled user navigates to a website, that user should be able to access the
content so that might be making sure all images are alt-tagged so that blind and lowvision uses can understand what’s going on. It’s including transcripts and descriptions for
videos or audio content. It’s things like thinking about how things are laid out on the page
so that people with cognitive disabilities aren’t confused or are unable to read. Or like on
my professional website, I have a color switching scheme so that you can go between
dark on light or light on dark depending on what they can see. And often this is kind of
treated as an afterthought by web designers and people running feminist sites.
You have the classic situation of a site puts up a video that says “This is your must-see of
the day, and you all have to watch this video and follow the directions for the action item
in it.” …And it’s not described. And there’s no information about how someone who
can’t watch this video could follow the action item. Which is really, really frustrating for
disabled users because we care about these causes, and would love to take action but we
can’t because we haven’t been given any directives.
And there’s something that I refer to as emotional access, which is about whether a space
is actively welcoming to people with disabilities or not. You could have a site that
completely meets web standards for accessibility one hundred percent: images are
beautifully described, all audio and video content conforms with recommendations, it’s
like a total pleasure to navigate, but the content is ableist or the articles on the site are
solid, but the comment threads quickly degenerate into a really unsafe space for people
with disabilities.
When I am speaking, I often compare this to—you are at a lecture hall, and it has
complete access like ramps for wheelchair users but the person who is giving the lecture
is giving a talk on how we should sterilize people with cognitive disabilities. It’s
physically accessible but it is not emotionally accessible to people who might want to be
in that space.
Anna: I completely agree. I think one of the things that I get sort of “squicked” out over.
if I may use that term, is in a lot of anti-oppression spaces is in terms of emotional
accessibility is when you will have a bunch of commenters who don’t have disabilities
sort of sauntering forth to offer their unique opinions and then when you do have
commenters with disabilities who are like, “hey maybe this isn’t such a good direction to
be going in,” or will try to politely say, “could you not try and bring up the sterilization
thing?” or that, “It’s good for x, y, or z reasons,” and then they will either be ignored, or,
I don’t want to say excoriated because I think that’s a strong word, but they will get the
short end of the stick when it comes to people really understanding their comments or
reading them charitably.
s.e.: Kind of the classic, this comes up a lot, with people asking for physical access.
When people say, “Hey I see you posted a video, there’s no transcript, could you give me
a quick overview of what’s in it?” Then the first response is “Prove it,” or “Why do you
need a transcript?” And there’s this demand to prove you need access, to prove that you
have a disability. This comes up a lot with people who have cognitive/intellectual
disabilities where someone says “I don’t understand. Why you can’t watch videos? You
can see and hear fine, so what’s the problem?” The burden is constantly put on people
with disabilities to ask for access, both physical and emotional, and that’s constantly
challenged. And so there’s this claim that you can just ask for access and it will be
provided which is not actually born out in the way people behave.
Anna: Yeah and the whole “prove it” burden—I mean, how are we supposed to “prove
it.” Do you want to see my voluminous medical records? I don’t know.
s.e.: I think this ties also in to the very rapid nature of discussion that happens online
where conversations move extremely quickly and people with disabilities can’t keep up
and they get kind of piled on and there’s this attitude that “if you can’t take the heat, you
should get out of the kitchen.” When my kitchen is hot, I open a window and turn on a
fan. I’m just saying and there’s this attitude that people with disabilities have to be superhuman to participate in discussion because they must keep up with everything. And that
they have to respond immediately to emails and comments and there’s this constant
requirement that you be available when for a lot of us it’s second or third shift work—it’s
not fun. We’re not readily available because we are dealing with things like trying to stay
alive.
Kjerstin: Speaking of burdens put on users with disabilities, you also brought up that
often disabled users are asked to educate or show up on these sites after pointing out
flaws in accessibility. Do you want to talk more about that?
Anna: I guess I can jump in… I know that a lot of anti-oppression site people on the
internet will talk about, that you shouldn’t expect people to be ready to educate you, but
at the same time I think that this hasn’t quite seeped in with regards to disability because
these threads will turn into 101 like, “Why is disability a feminist issue? We are all
women, why can’t we talk about it as women?” Or some other ridiculous kind of
assertion and it’s just sort of what’s the word I’m searching for here, it’s interesting to me
that a lot of feminists hold onto this concept of oh well, if you are not a feminist we are
not here to educate you—this is not 101. And yet some of them turn around and do the
exact same thing to people with disabilities.
s.e.: I think I’ve noticed this as well that there’s an attitude of like…people will ask a
person with disabilities to comment. I actually get this a lot—I get emailed constantly by
people saying, “Have you seen this thread on such and such a website?” And “Oh, what
do you think about it?” Or, “Have you commented on this public issue?” As though my
sole purpose in life is to educate people about disability topics and answer my opinions.
And I’m not the Encyclopedia Britannica. You can’t whip me off the shelf when you
want to use me for an argument and then stick me back on there. But that is the attitude I
get from a lot of sites--that the only real interest in people with disabilities is when a
dispute needs to be settled or when a topic of disability is brought up and everybody
needs to be educated. And nobody really thinks that we want to just participate in
discussions like everyone else. For instance, we might be interested in comments in a
thread about race just because we are interested in racial issues because we are not singleissue people wandering around only dealing with disability and that we can be treated as
kind of something that can be put in a box when we are not needed. And, we are excluded
from a lot of conversations either indirectly, because people assume that we are not
interested if its not disability-related, or directly, in the case of right now I’m following
the treatment of Jeremy Lin in the news because I have a lot of interest in Asian
American history and discrimination. The term coined by the mass media to discuss the
situation is ableist! And so I’m going to all these racial justice sites because I want to
read about it and all their headlines say “Lin-sanity.” And all the commenters are going
“This is crazy!” and I’m going “I can’t read this, I can’t deal with this,” and I’m clicking
away because its been made clear that I am not wanted in these conversations.
Kjerstin: Because both of you were behind Forward: Feminists With Disabilities. The
website that through its title and its mission was to join these two movements, I wanted to
know what were some of the biggest challenges of running that as well as other really
great parts of running that and running that space?
Anna : Oh boy, I think we could do an entire podcast on that topic alone…
s.e.: or a whole year of podcasts….
Anna: I think some of the biggest challenges for me were that people would sort of refer
to our site when they needed something to back up that a certain term was ableist or the
conversations about disability and sexuality they would link to our site. But other than
that, there was not a lot of linkages happening and discussions on their own sites were
happening. … the sort of “add and stir” model of covering the oppressions. Like, “I can
link to Forward about x topic or y topic and now I’m done--yeah!” That really kind of
rubs me the wrong way. I think that was the biggest challenge for me. I expected things
to change faster than they really did. But the really good thing about Forward is that I met
a lot of really interesting people and I think a lot of the commenters were really great
about sharing their experiences in the comments but also being respectful of other
commenters which was really nice. So yeah, it was really good to have that supportive
environment where you could write about stuff that you maybe couldn’t write about in a
guest post in another blog and sort of have that community in place.
s.e.: I think that one of the frustrations for me, speaking of community, was the lack of
community support that we experienced because we were sort of odd ducks. Feminists
didn’t know what to do with us because we were talking about disability, and the
disability community didn’t know what to do with us because we were talking about
feminism. We were the sort of Alcatraz of the social justice blogs like alone in the middle
of the bay. Nobody really knew what to do with us but they would send a ferry over to us
once a day. I think one of the greatest examples was when Annaham wrote her post about
Amanda Palmer and the Evelyn Evelyn project we were getting hateful, hateful, I mean,
rape and death threats, and we were not concealing this, but neither the feminist
community nor the disability community really stepped up to be like “hey, this is not
okay.” We did not receive near the ground support that say, individual feminist bloggers
coming out now about abuse do, and it was really hard to keep going because this abuse
was constant while this site was open and there were endless controversies and this
community basically really hung us out to dry.
Anna: And I really think it’s interesting how popular culture is a thing in the feminist
blogosphere and yet when we were dealing with irate fans who were like, “you should
kill yourself, die for saying these things, you shouldn’t be saying these things about
Amanda Palmer…” Just to feel silence from the very people you would expect would be
on this. It just kind of I guess can say it was disappointing… that’s about as diplomatic I
can be with that.
s.e.: I think it was also very telling… and as Annaham was saying… looking at our traffic
and looking at what people linked to, is looking at the legacy that Forward seemed to
have left behind. The things I see that are being linked to are the Ableist Word Profiles,
which was a series originally intended to explore language and get people thinking about
the role language plays in kind of insidious oppression. It wasn’t meant to be a series of
mandates about what language people should and shouldn’t use. It wasn’t meant to be
any authoritarian statement on how people should use language. It was meant to be the
start of a conversation and instead I see those posts being linked to shut down
conversations. Someone will write a really great, thoughtful, articulate piece and then a
comment will say, “Well you used the word ‘crazy’ so I’m going to dismiss your
argument. See? Forward says so.” And it’s so frustrating for me as a writer, as a creator,
and as an activist to see that this is the legacy that my work is leaving behind when
there’s so much great work at Forward. There’s pop culture analysis, we did a lot with the
international disability community, offering perspectives on personal stories, talking
about medical ethics and technology. There’s this great wealth of information that
feminists really could be taking advantage of talking about embodiment and sexuality.
And what it is like to live with a disability and this material is not being used or cited. It
really dismays me that we created a wealth of material that was designed to be
educational and we are still having a lot of 101 questions that sparked a lot of these posts.
Anna: Yeah that’s what really gets in my grill is the sort of reluctance to move beyond
the 101. But we tried and I think a lot of times at Forward we really succeeded with that.
s.e.: To end on a positive note to not sound like a horribly bitter shrew here, one thing I
think that Forward did do was is that we had a tremendous impact on our readers. I still
get emails from readers who go through the archives and our former blogs as we have
moved on to new projects, about how much the website impacted them and affected them
personally. And that’s really important to me. Getting an email from someone who was
really reluctant to identity as disabled until they started reading Forward and understood
disability culture and the vibrant community that surrounds disability. That means a lot to
me personally and it makes me glad we did the project even though at times it was really
frustrating.
Anna: Yeah I’ve had some of the same… well I don’t want to say same, but similar
experiences with people emailing months after I posted on something and they are like
“thank you so much for posting on this, I have friends who have this condition and it
helped me understand it better,” or “I have a condition myself” or what have you. It’s
really nice to get those emails especially when you are moderating those comments and
it’s like spam, spam, personal attack, good comment, good comment, spam. So it’s nice
to get that feedback and I’ve also had people email me vehemently disagreeing with me
but so open to have that conversation which is good because I like having that critical
feedback as long as it isn’t you’re an asshole or you’re cognitively disabled or whatever.
Kjerstin: Cool. So the archives of Forward are still up for people to check out. Are there
any other sites right now that you see as promising or accessible emotionally and literally
as you were talking about earlier?
Anna: I really think there are a lot of illness-specific communities on sites like
LiveJournal and Dreamwidth that are worth checking out. Many of them can be specific
to the actual conditions like Crohn’s or Fibro or CFS. But I think overall those spaces are
really really good. I really like being a part of these communities. Most of them are
locked so it can be a place for people with these conditions can talk amongst themselves
so I think there is a lot of potential there.
s.e.: One place that is really interesting for people who are interested in following
disability politics and ongoing social commentary, which is one of my passions, is
actually the Guardian’s coverage of benefits cuts. They’ve done a really fabulous job of
assembly people with disabilities with interest in disability community with pieces going
up pretty regularly. The comments can be a little dicey but the actual pieces themselves
are really great and helpful for non-disabled people who might not be aware of the impact
of these benefit cuts and what welfare actually does, and what it means when you are on
welfare, what kind of daily needs people with disabilities actually have, and what life is
actually like for people with disabilities. Because I feel like one of the reasons there is
such a huge divide between the disability community and the feminist community is
because non-disabled feminists have this cultural perception that disability is like the
worst thing ever and awful and it just consumes your whole life and that’s all you are.
And breaking down that divide and showing people that being disabled is really not that
awful and in fact I have a life like many non-disabled feminists: I still have to eat, and
make a living, I like gardens, and I have cats, and kind of humanize the face of disability
and measure and connecting these communities and making them understand why we
both have something to offer each other.
Kjerstin: What do you think are the biggest misconceptions that non-disabled feminists
have about people with disabilities online or online organizing?
Anna: One is that being chronically ill and being a feminist is not possible. You see this
in a lot of more mainstream feminist blogs. I know this is from a while ago, but Jezebel
had a piece where one of their writers said that fibromyalgia was not real and was created
by Big Pharma and actually that has some problems. With such an emphasis on being a
modern woman and having fun, being snarky, doesn’t create a lot of room for having a
chronic illness or things like that. We are all around ,but often we don’t participate in
these comment threads to be like “hey. you know, this is out of line” because it can be
such a hostile place. That is the major stumbling block for me personally… what s.e. was
talking about earlier with emotional access.
s.e.: I also think that a lot of non-disabled feminists are under the impression that
disability is a full-time job. And for some people it definitely can be, but for others
there’s this kind of perception that being disabled is all you do or it’s all you ever think
about and I encounter these attitudes that disabled people online must not really be
disabled because like, how can you be disabled and using the internet, because we are too
busy being disabled, right? And this kind of translates into this kind of “prove it,”
dismissive attitude we have encountered about disability. And it’s also a failure to
connect, as Annaham was saying earlier, well I’m not a woman or a feminist. Comments
like “why can’t we talk about this as women?” that being a disabled woman is not the
same as being a woman and the identity-based oppression people with disabilities face is
distinct from gender-based. You can experience both those same things at the same time
but you can’t just erase one with the other. So when we talk about things like rape and
sexual assault, for example, the statistics that one in four women in the United States will
be raped in her lifetime is awful and it gets bandied about a lot as rape culture and how
much we need to change as a society. For women with developmental disabilities it’s
nine out of ten women. When you compare and contrast other statistics looking at
unemployment for people with disabilities, not just sexual assault but molestation and
abuse, involuntary incarceration, institutionalization these are issues people with
disabilities face in much greater numbers than non-disabled women. So that means you
can’t talk about things like reproductive rights, for example, without integrating a
disability based component.
One of my pet peeves of the moment is there’s a huge conversation going on about
involuntarily sterilization in South Carolina? North Carolina? I always get the Carolinas
confused. But that the state is finally preparing to make compensation payments to people
who were sterilized. Which is awesome, except this conversation is only happening
around the race right now and there is no discussion of the disability component and the
fact that many people were sterilized for being disabled. But also the fact that there are
ties between disability and race. Black women were targeted as “feeble minded” or not fit
for reproduction and that this is really important to be discussing in a conversation
because involuntary sterilization for people with disability still happens. It still primarily
targets women of color. If we can’t even acknowledge that in a historical feminist
context, it’s really hard to get people talking about it in modern feminist issues. And I
think there is a lot of resistance to admit that a lot of these issues that are identified solely
as gender-based are more complicated and that intersectionality needs to be a part of
these conversations.
Kjerstin: Cool. Well s.e. I wanted to see if you wanted to talk about your USC talk but
before that is there anything else you want to talk about disability activism online that we
didn’t talk about or didn’t get to?
Anna: There was actually something that I wanted to discuss briefly and there was maybe
a point that I could interject this into our conversation about comments sections on
feminist blogs but I find that every so often there is a curiosity like, “Where are all the
people with disabilities on feminist blogs, and in the comments sections, and yada yad.”
You start getting non-disabled people talking about hypothetical people with disabilities
instead of actual people with disabilities weighing in. I think that is really kind of odd
because it veers the discussion that happens on the wider internet—“where are all the
women tech writers?” and “where are all the women writers and bloggers?” and
whatever. And I find it interesting that some people cannot hold that mirror up to
themselves and think maybe these people with disabilities not being on this website has
something to do with my behavior. I don’t know. That’s the only thing that I wanted to
thing I wanted to shoe-horn into the discussion before we move on.
s.e.:Something also about disability activism online that we also discussed in our piece is
that it’s much older than people realize. This is another thing that frustrated me about the
legacy that Forward left behind. A lot of people seem to act like, one, Forward was the
only disabled feminist site ever which is not true and the other thing, two, is that Forward
was the first main site dedicated to disability issues ever which is also not true. Disability
activism online has a very lengthy history dating back to the eighties. Some of the
examples of online organizing came from the disability community because of what a
great medium the internet is for people with impairments who it might make it difficult
for them to leave the house or who are separated by big geographic barriers. It’s
frustrating for me to watch a lot of feminists act like they are inventing online organizing
when disabled people have been doing it for a long time. You see the same thing actually
with grass roots organizing and being out on the streets when people with disabilities
were involved in suffrage marches and part of the civil rights movement. We have been
very active at agitation and protest.
The classic example of how our contributions have been diluted is Helen Keller. Most
people who know who Helen Keller was know her as the little blind girl who couldn’t
communicate until she learned to sign water in her caregiver’s palm. Helen Keller was a
radical socialist. She wrote a large number of books, she participated in protest marches,
she was a teacher, she was very politically active and it’s really sad to me that this
amazing woman who was a total firebrand is reduced to “that poor crippled child” who
was just looking for a non-disabled person to give her life meaning, when in fact her
story is much more complicated for that. For starters, her caregiver was not non-disabled.
It feels like an erasure of legacies and it happens not just of people with disabilities but
with people of color, non-white people, the queer movement. It gets kind of appropriated
and rolled into the non-disabled mainstream culture which then acts completely shocked
as Annaham was saying that the community is basically stealing from them and it’s hey,
we’ve actually been doing this for quite awhile and the reason we haven’t been hanging
out with you guys is that you haven’t been making these spaces welcoming to us at all.
Kjerstin: Yeah, what you were saying that at Forward you weren’t seeing things move
fast enough. History sort of repeating itself … do you see a way that there might be
certain ways so that history doesn’t repeat itself, repeating these erasures and
appropriations? What do you see as a better space online?
s.e.: Actively including the people you are talking about. Or better yet, having them talk
for themselves. From a famous disability movement in South Africa: “nothing about us
without us.” I see this trend where people are coming from a good place, where people
want to support people they are in solidarity with non-disabled people writing about
disability instead of inviting a disabled guest poster or linking to a disabled person’s
writing on another site. Kind of promoting more marginalized voices. This is an
especially big problem for more mainstream feminist websites. They generally don’t have
a very narrow representation on their masthead. It’s typically white, non-disabled,
heterosexual, middle-class and as a result these sites tend to cater to these issues. And
online especially of questions of attribution and crediting and get tangled really quickly.
The kind of ethical responsibility if you read a piece and it inspires you and you write a
response, link to the original piece, it’s not that hard. It would be a significant difference
with the appropriation problem. I also believe sites really need to get serious about what
type of community they have in their comments. They could decide to have a zero
tolerance policy for oppression and they could decide to delete or refuse to publish
comments that aren’t acceptable. My colleague Flavia is fond of saying, “Not all opinions
are worthy of being printed.” I think a lot of feminists sites feel like they need to air all
views or make sure that every voice is heard. And the disabled person is thinking there
are a lot of places I could go to read about how all mentally ill should be medicated and
locked up. That is not a marginalized view and it readily available so I don’t need to see
comments about it on feminist websites. They do not add to this website but they do
make it unsafe for people with mental illness who might want to participate. And I know
from experience that comment moderation on feminist websites is hard but that doesn’t
mean it shouldn’t be done.
Anna: I think that commenting culture has a lot to do with why we are not going forward
and why we are mired in these 101 conversations. A lot of people’s first response to a
blog post is to comment on it instead of going away and thinking a little bit. The thing
I’m thinking about is that meme from the nineties or early two thousands where the first
comment would say “first!” I think the whole listening thing is not the internet’s strong
suit as a whole. I put myself in that category. When I read a blog post that gets my
hackles up I want to be the first to comment on it and be the first to point out its
problems. But at the same time I do think that non-disabled people can help the problem
by not contributing to the problem and by just listening instead of just typing out some
words like well I know this because I know disabled people and blah blah blah. And I
think that’s a really important step that some people haven’t considered.
s.e.: I think it’s really natural to have a knee-jerk response to a post on a subject that
might make you uncomfortable or and you are kind of going, “whoa. I have not thought
about this before and I don’t know how I feel about this, this is the first thing I’ve read on
the subject.”
Kjerstin: “…I should probably just start typing what I feel right now in a post.”
s.e.: The way it happens to me, is I step away form the computer and I go to the backyard
and I think, “What about this post is creating such a visceral reaction? Maybe I should go
back inside and look up some other resources to learn more about it.” For example, if I’m
reading a post about an in-home care organization that hired a sex worker for a
developmentally disabled adult, and it makes me uncomfortable, why is that? Maybe I
should go read some sex worker blogs maybe I should do more research on adults with
developmental disabilities. Maybe I should think about it and learn more about it and if
I’m still having this reaction maybe I should take out a notepad, draft a response, and sit
on it for awhile, and really think about if I still feel that passionately then it’s time for me
to comment.
Kjerstin: I think you should write a book about how to use the internet.
Anna: I like that idea.
s.e.: How to use the internet by s.e. smith. First chapter: don’t read the comments.
Kjerstin: Great, thanks so much for that discussion. s.e. I know you have an upcoming
talk at USC, Anna do you have any upcoming sites/projects or anything you want us to
check out?
Anna: I kind of don’t. I just finished writing a graphic novel for my master’s thesis. But
I’m not currently looking for a publisher but I might post some excerpts on my website; I
don’t know yet. But that’s what I have going on right now.
s.e.: Yes, I do have a talk at USC on the twenty-second of March at eight pm. I don’t
have venue information but I will post it on my website which is sesmith.info. And the
talk is on the desexualization of people with disabilities and the social attitudes of sex and
disabilities. I’m looking specifically at what this means for sexual education, fighting
sexual assault, integrating people with disabilities into queer communities and other fun
and exciting things. There is also a Q and A so you could come ask me afterwards.
Kjerstin: Great. Well thank you again for taking the time to do this phone interview!