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 low-vision 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 super-human 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 single-issue 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.