Moderator: Chris Bell
Panelists: Heather MacAllister, Amanda Tink
Edited from Real Time Caption transcript by Eli Clare
Chris Bell: …We will begin our panel, which will discuss narratives of intersecting. Chris Bell is my name and Amanda Tink and Heather MacAllister. One person is missing, and that’s Michael Robinson. There’s been a bit of an emergency, and he will be unable to join us. And Heather might have an interesting story about the Muni.
Heather MacAllister: it was very challenging. I don’t have the same issues like some of my other friends as far as using public transport. But nobody was using public transport so I’m very glad to be here. As people coming who live in San Francisco, particularly people who use chairs or scooters, they might be late just because of that. I know some people might be late. We will welcome them also even though they are late.
Chris Bell: [announcements] …I will move to our first presentation: “Being Blind and Queer in Australia.” She’s studying…. Please welcome Amanda. [applause]
Amanda Tink: Hi. I will try to do as good summary of my paper as I can in 15 minutes. This is the first time I’ve done this. Nobody told me it was so easy to run something that goes for half an hour without even thinking about it.
AT: I was interested in the differences between the blind and queer communities. They are very opposite, I think in a number of ways. One of them being the most obvious which is that the queer community is generally very visual, whereas blind people are not. So I decided to speak to a number of people. I asked for volunteers, and I ended up with 12 people who already willing to speak to me about their experiences of being blind in the queer community and being queer in the blind community and about whether there is any in fact, a blind/queer community. I started out this paper [assuming] that there was and would be. It seems there is not. Which is essentially the conclusion of my whole paper. Just in case you wanted to leave now. [laughter]
AT: And but I think there are some really serious issues that cause that, which I think are worth having some consideration by everybody. I think that generally blind peoples inclusion in the queer community is accidental or exclusion as well. That both tend to be just how everything has happened. There seems to be no thought given to blind people at all. And I think that other people with different disabilities will find they can relate to a lot of this stuff I’m going to say. And that’s a good thing because I think we can all work together to solve some of these issues.
AT: One of the big ones being which we’ve spoken about in various sessions that people tend to assume that you are heterosexual or even asexual. That means for blind people that you are not going to get invited to various events. And the biggest problem with that as well is that if you are not going to get invited, then you have to look for opportunities to invite yourself along. And as I was saying before, the queer community is very visual, expressions of sexuality tend to be very visual, through hair style or dress or however. And that is all, of course, inaccessible to blind people. So going along to queer-specific events means that you have more chance of meeting queer people, obviously.
AT: That’s one really important point. Another thing that people came up with was that if you want to know, if you really want to get involved in queer culture then you basically have to have some friends who are willing to explain things to you and point out all of the visual elements of it. One thing that people found that was really concerning is the intolerance of difference, I suppose, within the queer community. Some people thought this was just the usual intolerance that a lot of people have against disability anyway. Others thought that this was a real queer-specific thing. I suppose similar to the thing when you go through when you are growing up, when you are a teenager, fear of association, being seen with somebody different.
AT: As you might expect, the biggest problem that blind people have in being involved in the queer community is nightclubs. [laughter] That’s a big problem, because I think most of us know how much of an integral part nightclubs are in queer community. Just lost my place and my hands are cold. Just excuse me for a second. That’s one advantage you have, you don’t need to read with your hands.
AT: Yeah, so night clubs can be difficult in all sorts of ways. Mostly the music which creates all the difficulties because it means it’s difficult to communicate. Sighted people often have things that they can do, like hand actions or even half lipreading to compensate for that. Blind people don’t have that advantage. The other thing is that it completely disorients you if you have learned the space beforehand. Learning perception, you can hear where things are, where walls are and so on. Even if you have learned that beforehand, having something like the music over the top of that kind of fades into the distance.
AT: There are also more personal issues, like finding the toilets, because that can be problematic. Or perhaps misinterpreted, if you ask somebody to go to the toilets with you. [laughter] So there are a number of important issues.
AT: One aspect of queer community where blind people really do feel comfortable and [like we] fit in is on-line. It’s the place where you can find information about all sorts of things. You know, erotica. Things that you are concerned about.
AT: And also there are occasionally magazines. This is a really big concern because often they are available in print. We were walking around San Francisco the other day and picked up a big thick glossy magazine, and it is in print, and it is for free, and most of them are, and blind people don’t have access to those things.
AT: Chatting in particular on-line can put you in a real advantage position, I suppose, because you have control over disclosing your disability. I think a lot of people would relate to that. You can let your personality shine through first. And then decide what you want to say and how.
AT: Turning to the blind community and how it deals with queerness. Unlike the queer community, which basically implicitly excludes blind people, the blind community specifically rejects queerness in a lot of ways. People had no involvement with the blind community at all. Of the remaining 8, 4 of those had experienced really specific harassment, things like isolation, being gossiped about. The blind community is tight knit. It’s very difficult to stop it.
AT: Blindness agencies, which is where you get all sorts of services from having your mail read to learning how to get around various places, have similar attitudes. And then there were 4 people who had specific instances of harassment. One had been told to not reveal their sexuality to other clients. One had a staff member who encouraged and participated in clients harassment of that person. One person was refused a volunteer position on the basis of their sexuality. And one person had confidential details of their sexuality revealed to another client. And this understandably leaves a lot of people concerned about anonymity. This further isolates them because things like learning how to get around and having material—gay news for example—put into Braille are not an option any more.
AT: So this takes us to the blind/queer community and the fact that there isn’t one despite the obvious need for one. Most blind queer people had one friend who was also blind and queer and that helped a lot. Everybody that I spoke to wanted to meet more blind/queer people. And in fact, all of the women that I spoke to took the opportunity to ask me about my experiences. I think that gives everybody an opportunity to think about inclusion and exclusion and what they both mean. And how inclusion still often means exclusion in some ways. .
AT: …The only other thing I wanted to say was that it’s important to think about how these things compound each other. And I think many people with disabilities will have that experience, like, for example, if you are in a nightclub or trying to be part of a nightclub. If you are blind, you cannot become part of that so easily because of the music and just the general atmosphere.
AT: Out of all of the people that I spoke to, nobody could go into night clubs despite the fact that all of them had tried to be involved in the queer community and that was the first way that everybody tried pretty much.
AT: There was one person who felt they were active in both communities. And they really enjoyed night clubs and liked to be part of them. [They] found they could only cope with it for only a little while because it takes so much concentration to be there [unreadable]. Not being able to see people walking around who look like you makes you feel isolated. So this all leads to an incredibly isolating experience that I think everybody can do something about. Thank you very much. [applause]
Chris Bell: [Announcements] Again my name is Chris Bell, and the title of my paper is “To Act Is to Be Committed: AIDS Activism and Identity Politics in an English Graduate Program.” I don’t have much to offer by way of a biographical statement, because I think you’re going to hear enough about me. HIV positive feminist vegetarian. [laughter] There is a handout that lists some current trends and statistics in AIDS prevalence and incidences as well as some quotes from different individuals, and that handout is available along with a copy of my paper in large print version at the table. I wanted to share orally to sort of preface my paper this. Every 5 seconds someone in the world contracts HIV. Accordingly, in the 15 minutes it will take to reach the conclusion of my paper, 180 individuals, 180 human beings, of flesh and blood, fiber and substance, will have contracted HIV. When you hear that statistic and when you take a moment to unpack it and consider its ramifications, I think you ultimately come to the conclusion—I know I did—that the AIDS crisis as we know it might very well still be beginning.
CB: [text provide by CB] It used to be when people asked me why I did the things I did after receiving a positive HIV diagnosis during the second year of my Masters program—why I shared my diagnosis in a cover story for the school newspaper; why I earnestly talked to classes and student organizations about HIV/AIDS; why I did not contest the Director of Composition’s decision to “relieve me” of my teaching assignment largely as a result of the diagnosis; why I protested this shortsighted decision by leaving the university three months before my degree would have been conferred—I would reply, “It’s because I was stupid.” I don’t think that anymore. I now view my reasoning and thought-processes as much too complex to convey in such a cavalier, throw-away response.
CB: In this paper, I describe some of the episodes occurring prior to my HIV diagnosis, including the salient, precursory account of a fellow student’s death from AIDS. I then discuss my diagnosis and the ensuing series of events that transpired in the English Department. I conclude with an analysis of the overarching experience, examining its personal impact as well as its relevance as a cautionary tale for other graduate students.
CB: It should never be argued that I am the most scholarly individual in the world. My undergraduate grade point average was an undistinguished 2.3 on a 4.0 scale, a 2.7 in my major of English. Clearly, I did not set academia on fire during those four critical years. I was, in retrospect, distracted, expending too much energy on extra-curricular pursuits, e.g., student government and outside reading. Despite this lack of academic prowess, I decided to apply to graduate school because I wanted to continue studying literature: plot development, character depiction, anachronisms, and the like. Thus, I devised a passable personal statement, suffered through the General and Subject Test in Literature GREs, begged three professors for recommendations, and patiently awaited a response. To my surprise, not only did I gain admission to the one university I applied to, I was also provided a fellowship as a bonus. Consequently, after taking a semester off, I began graduate school the following January.
CB: In contrast to my lackluster undergraduate record, I enjoyed some degree of success that first semester. This could probably be attributed to the fact that I actually attended the majority of my classes. I even liked some of them(!), the most engaging being “Theory and Practice of Composition” which prepared me to teach the following semester.
CB: This second semester, on the other hand, proved disastrous. I had a difficult time balancing teaching with coursework; as a result, the latter suffered unreservedly. Perhaps things might have been different if I had felt a connection to my classes. I couldn’t however because most of them were immersed in theory and criticism, and I deemed it disingenuous to apply yet another postmodernist-Lacanian perspective to The Awakening. The whole enterprise struck me as derivative and meretricious. In her novel Fear of Flying, Erica Jong flawlessly captures my sentiment: “I had gone to graduate school because I loved literature, but in graduate school you were not supposed to study literature. You were supposed to study criticism. Some professor wrote a book ‘proving’ that Tom Jones was really a Marxist parable. Some other professor wrote a book ‘proving’ that Tom Jones was really a Christian parable. Some other professor wrote a book ‘proving’ that Tom Jones was really a parable of the Industrial Revolution. You were supposed to keep all the names of the professors and all the theories straight so that you could pass exams on them. Nobody seemed to give a shit about your reading Tom Jones as long as you could reel off the names of the various theories and who invented them…. Fielding would have been rolling over in his grave. My response was to sleep through as much of it as possible.”
CB: And sleep I did. Given the option of attending my seminars or napping, more often than not, I opted for the latter. Before long, I was mired in a cycle wherein I was depressed because I neglected my classes and neglected my classes because I was depressed. The battery of anti-depressants prescribed by my therapist helped little during this time. What did comfort me was reverting to my undergraduate tendency of exclusively reading what I thought I should be reading, the texts which interested me the most. Accordingly, while my colleagues struggled with Bakhtin, I was engrossed with the metaphor of the train in Anna Karenina.
CB: A few weeks before the end of this second semester, my lack of class attendance was brought to the attention of my boss, the Director of Composition. He called me at home one afternoon to check on me after a colleague had taught my class two days in a row. I assured him my depression was merely a stumbling block and promised an imminent recovery. Despite my optimism, I concluded the semester by taking “incompletes” in my coursework. I did however manage to evaluate papers and assign grades for the class I taught, but not without attracting my boss’s continued concern.
CB: For this reason, I recommitted myself to graduate study the following semester. In addition to finishing my “incompletes” from the previous term, I excelled in my new classes during the first half of the semester. My renewed diligence was interrupted one mild day near the end of spring break. While riding home with a colleague, she asked if I had “heard” about Billy Vance, an English Ph.D. Candidate. After acknowledging I had “heard” nothing out of the ordinary, my friend apprised me that Billy was suffering from the final stages of AIDS. Indeed, three days later, Billy died.
CB: When Billy Vance died, I anticipated an apocalypse of sorts in the English Department. Instead, life went on as if nothing had happened. I did not bear witness to a single expression of concern or sympathy over his death. Whether this reticence in mourning Billy was because the department was in a collective state of shock (most of us were unaware of his health status until days, in some cases, hours, prior to his death), or whether it was due to a sense of disdain because he died from AIDS, I’m not sure. All I know is that I wanted some form of acknowledgment to give me closure. I needed to process Billy’s death by talking about it. Since this exchange was not occurring in the English Department, I decided to share my thoughts and memories of Billy with the university’s gay, lesbian, bisexual, and transgender student organization, the Triangle Coalition. In summary, the group was surprised to learn that someone on our campus had died from AIDS, and they spent a good portion of that meeting discussing AIDS as it affects college students. As a result of this interchange, I gained some of the closure I needed.
CB: It seems ironic in retrospect that I had to venture outside of the English Department to process Billy’s death. It baffles me how our field of study can spend an illimitable amount of time examining representations of death and human suffering in The Grapes of Wrath, Madame Bovary, King Lear, and countless other canonical works, but when confronted with death’s reality in everyday life, all of a sudden we become mute. In his essay “The Evidence of Things Not Seen,” James Baldwin recounts the story of a friend who died from tuberculosis. Baldwin’s community, the community of the church, does not express sympathy for his friend because he was a gay man who—like so many gay men who die from AIDS—ostensibly died because of his “actions.” The following excerpt from Baldwin’s essay is vividly reminiscent of my sentiments toward the English Department, my community, following Billy Vance’s death: “The [incident]…haunted me…. In some way, obviously, it haunts me still. I had the feeling, dimly, then, but very vividly later, that he died because he had been rejected by the…community…. That we had it in our power to bring the light back to his eyes. He was a sinner and he died, therefore, in sin; but, we are all sinners. Let him who is without sin among you cast the first stone. But I could not say that, then…. I was acting, after all, on the moral assumptions I had inherited from the community that had produced me. I had been told to love everybody. Whoever else did not believe this, I did. The way of the transgressor is hard, indeed, but it is hard because the community produces the trangressor in order to renew itself. I am afraid that this mathematic, this inexorability, will last as long as life lasts; and I would not have to risk sounding so grandiose were I not under the necessity of attempting to excavate the meaning of the word community—which, as I have understood it, simply means our endless connection with, and responsibility for, each other.”
CB: As a member of the English Department community, I was frustrated and appalled by the silence following Billy’s death. Months later, when I became apprised of my own HIV-positive status, my actions would reflect my efforts at combating this silence.
CB: I took a much-needed break that summer. In lieu of enrolling in classes or teaching, I brainstormed thesis topics and devised a Women’s Studies-themed syllabus for the class I was scheduled to teach that fall. When the semester began, I attended classes and worked on preliminary thesis research. In preparation for doctoral study at another university, I signed up to retake both GREs and requested Ph.D. Applications from several choice schools. Due to a lingering malaise, my doctor at the Student Health Center suggested I be tested for HIV antibodies. On the second Wednesday in October, I received a positive HIV diagnosis.
CB: Twenty minutes after receiving this diagnosis, I inadvertently encountered the president of the Triangle Coalition. Remembering the sense of closure I felt when discussing Billy Vance’s death with this group, I asked her if I could share my diagnosis at their next meeting. She agreed this would be beneficial for all parties involved. A few days later, I was in the Women’s Center preparing for class when the editor of the school newspaper approached me. She explained that she was writing an article about college students’ attitudes towards AIDS and asked me for a quote. She had heard me speak about Billy to the Triangle Coalition earlier that spring and also knew I had integrated an AIDS component in my previous Composition class. As she was unaware of my positive status, I viewed this as an incredibly ironic opportunity. For this reason, I apprised the editor of my recent diagnosis, and expressed my willingness to discuss it in the newspaper. As a result, I was interviewed for an article which became the cover story of the newspaper’s Homecoming issue to be published later that week, nine days after my diagnosis.
CB: Instead of reading about my HIV-positive status in the school newspaper, I preferred my close friends hear of it from me. With this in mind, I devoted the three days between the newspaper interview and its publication to a series of conversations apprising my friends of the situation. One of these individuals was the Director of Composition. While he expressed concern about my health, he was alarmed with the effect my “coming out” in the paper might have on my students. Suggesting I had enough to contend with and would be better served without the additional responsibility of teaching, my boss advised me to take the remainder of the semester off. In lieu of teaching, I was expected to assist in the Composition office, a form of desk duty. Because I respected this individual and did not, at the time, wish to consider his line of thinking as discriminatory, I abided by his decision.
CB: The newspaper was published to great fanfare. I received an immeasurable amount of support from various members of the campus community, most notably in the form of invitations to present experiential-based AIDS programs for several classes and student organizations. In the weeks following the newspaper’s publication, I had the opportunity to process my boss’s decision which I could clearly see was specious. At the end of the semester, I attended a meeting with him wherein I was given permission to teach the following semester, but only with the stipulation that I teach an “approved” syllabus, one he would devise for me. In essence, I had to decide if I wanted to continue in a graduate program that prides itself on granting its students teaching autonomy, yet asks me to accept differential treatment. It took me less than a minute to come to a decision. In addition to declining the offer, I chose not to enroll in classes the following semester, effectively terminating my relationship with the English Department and, by extension, the university.
CB: In retrospect, my experience at the university was a particularly heuristic one in terms of my personal identity development. There I was at the time of my HIV diagnosis: a black gay man teaching a Women’s Studies-themed class. This seems to be the sort of diversity higher education in the late 20th/early 21st century strives for. Nevertheless, my teaching duties were relieved because I added the tenet of HIV-positive not to my curriculum, but to my identity. This puzzles me, especially considering I had integrated an AIDS component in the previous class I taught. The dynamic is peculiar: I could talk about HIV from a theoretical perspective, but I could not teach as an HIV-positive person.
CB: Perhaps I might have understood my boss’s decision if I had decided to abandon the Women’s Studies syllabus and teach a singular-focused HIV-related one. But I made no intimations toward this. I simply wanted to continue teaching the class I had begun. In its adopted statement on graduate students, the Modern Language Association asserts, “Graduate students’ freedom of inquiry is necessarily qualified by their still being learners in the profession; nonetheless, their faculty mentors should afford them latitude and respect as they decide how they will engage in teaching….” Based on my experience, particularly the condition that I could only teach an “approved” syllabus, I do not believe I was afforded this latitude and respect.
CB: Moreover, Anthony D’Augelli, professor of human development at Penn State notes, “One of the espoused values of higher education is to advance personal intellectual development while simultaneously developing a broader sense of personal responsibility to others.” In keeping with D’Augelli’s view, it was essential for me to engage the campus community, if only temporarily, in a series of discussions about HIV/AIDS. Despite this belief, the message I received from the English Department was that I should be silent. Ultimately, this ideology reminds me of the propaganda films of the 1950s wherein elementary school children were instructed to “duck and cover” should they see the flash from a nuclear explosion—as if cowering in fear was going to protect them from the radioactive fall-out. To reiterate, my goal was to stimulate discussion about a disease that people have historically been ashamed and/or afraid to talk about. It is unfortunate this attempt was encouraged by virtually every facet of the campus community except the English Department.
CB: In essence, while I wish things had been brought to a more satisfying conclusion in the English Department, I harbor no regrets for the decisions I made. I did, quite simply, what I know should have been done. Likewise, in The Fire Next Time, James Baldwin contends, “People find it very difficult to act on what they know. To act is to be committed, and to be committed is to be in danger.” By virtue of having lived through this experience, I know what it means to be in danger, and I accept this risk as a result of my choice to link my academic pursuits to my commitment to social justice. I hope that other graduate students who feel as strongly as I would be willing to do the same.
CB: It has been said that people enjoy happy endings. Here’s mine: One month after departing from the university, I received a letter from the Provost. This missive arrived unexpectedly; thus, I curiously tore open the envelope and drew out the letter. The first word read: “Congratulations.” I read on. In short, one of the students who was in the class in which my teaching duties were “relieved” had read the article in the school newspaper. She had also heard me speak about AIDS to a Freshman Experience class. This student was struck by my efforts and wrote a letter nominating me for the university’s Human Rights Award. I won the award, and returned to the university six weeks after my departure to accept it. It seems fitting that I received this honor because although the university confers several hundred Masters degrees each year, only one Human Rights Award is given. All things considered, I like to think I earned it. [end of text provided by CB]
CB: Thank you. [applause] Thank you, particularly for bearing with me, as I sort of excised a part of that paper…. This is kind of a treat for me, because I actually heard Heather MacAllister speak earlier this year at a conference at Michigan State University, and I e-mailed her about a month ago and said to her that this is a conference series that I have attended for about three years. And her presentation was one of the best presentations I’ve seen not only in that series but just overall on the conference circuit. So this will be a great presentation, I promise. Heather’s presentation is titled “Other Bodies: Making the Connections Between Oppression Based on Queerness/Gender Identity, Size/Weight, and Disability.” Please welcome Heather MacAllister.
Heather MacAllister: …Thanks for being here, and I’m really excited to be in this community. When I do “Other Bodies,” the workshop, I generally do it with three other people, I have in the past. That’s Eli Clare, Jay Sennett and Jennifer Lyle. Because they are not here, I will do an amended version of it, because without their voices here, without their perspective, I can only present my own perspective. So what I want to talk about is my experience as a fat woman and how that relates to ability issues and disability issues.
HM: I have been an activist since 1985 or ‘86 now, and one of the things I’ve learned from doing “Other Bodies” is I’m hearing very personal stories, personal narratives, of people who have disabilities, and it is very striking to me the similarities that we go through, not only our experience of oppression but our experience of our own bodies. When I say fat people, I guess what I’m meaning specifically is fat people who don’t identify as having other disabilities. Obviously, there’s people who are fat and also have disabilities, but I’m more talking about fat people who don’t otherwise have a disability or anything, just to acknowledge that a lot of people are experiencing that oppression and that experience of oppression and joy of being fat and also the futility.
HM: There is some discussion of this in the size and substance community. I’m not sure how much discussion of this is happening in the ability communities, but there is some controversy about identifying if you’re a fat person, identifying as having a disability based specifically on your size and also using the ADA; that has been done with varying degrees of success. There are other people who could speak to that more specifically, and I’m happy to share those resources with you later. But the question is accessibility, at least my personal experience; I find myself and women and men who are my size and larger have similar disability issues as friends of mine who are slender but who use wheelchairs and other mobility devises. There are many theaters in my community where I can’t go. I can’t get in the seat. Riding on an airplane is a nightmare. For me it is impossible, for many people my size. There are a lot of restaurants I don’t go to because I can’t maneuver; others have chairs that have arms, so they’re really inaccessible to me. Turnstiles at the subway: there are a lot of things a lot of us here have experienced, and I think a lot of people don’t realize that fat folks have those specific issues…. It’s a matter of literally not fitting in, in the most literal sense not fitting in.
HM: And what I would like to do at some point today—either here or elsewhere—is have a discussion about identifying as disabled or having a disability because you’re fat and having those accessibility issues. What that means, is that a co-optation of disability issues? I don’t have any answers for this. This is something I haven’t talked about very much, because I haven’t had the opportunity except with certain individual people. So that’s part of what I wanted to talk about here, and this is the place to do that.
HM: Some of the things that we’ve also discovered in “Other Bodies” is our experience of our own physical selves. And I don’t need to harp on certain things, but certainly as a fat woman, I have experienced a lot of self-loathing and shame around my body and the intense desire to remove a part of my body that I hate. And I said that in a workshop where someone else who does not have a disability and is fat used the same words I use about wanting to cut off a part of their body, because it was “deformed.” That was how they felt about it.
HM: Now we know other people are talking about their bodies just the way we talk about our own bodies. I found so many similarities in that mental process with my friends who have other disabilities.
HM: Also, our path to liberation is pretty similar, too. I can talk about that later, if you want. People in the [dis]ability rights movement have come together politically and socially on liberation issues. It seems to me there is a path these people have taken, and in the community there are some similarities. There’s such a huge opportunity for coalition work that I can’t not come to this conference; I can’t not talk about it at this conference, because it’s oppression that’s located on the body. And a lot of us have this experience who are not a slender white male. A lot of us have experienced oppression that’s body-specific. For those of us who have visible disabilities, for those of us who are fat, those of us who are queer, people of color, it’s something we can’t hide; we can’t be in the closet about. And that sense of being a constant target all the time is something that I experience myself and that other people who have disabilities talk to me about and talk about in their writing. If you just want to get on the bus, you just had a bad day at work and you want to go home, go to the restaurant, whatever, but you just had a bad day, you’re a constant target and you never know when it’s going to hit. And I find it puts a lot of us in a very stressed-out, anxious space.
HM: Then other similarities that I’ve seen are when we’re trying to get services, particularly mental health services. There’s an understanding I see a lot in self-help and mental health movements, if you will, that if we would just have a better attitude about everything, we wouldn’t feel so bad about our oppression. I think this is true about anyone who experiences oppression that’s body-specific. We’re told that if we just let it roll off our back, we can choose our own reality; I mean, it’s true. I can choose how I behave, but that doesn’t change the fact that I live in a reality that is specifically against me, because I am a fat person. And that’s essentially true of people with visible disabilities. There is oppression against us, whether or not we have a good attitude. I just see so many of the struggles that I’m dealing with and feeling like a freak, even in the fat community, because of my proportions.
HM: From the waist up if people see me, they say, what are you talking about, disability fat issues? But when I go to the theater or when I stand up, all of a sudden it’s like, wow. I definitely feel like in the fat liberation community, feel like a total freak.
From Audience: You’re not the only one.
Heather MacAllister: I don’t want to be emotional in San Francisco. This city kills me. That word is very interesting, too, because I live in a lot of alternative cultural spaces, as a queer person, as a femme, as a kinky person. If I didn’t have anything else going on, I still am part of what a lot of us call freak culture. But I also know that word is like the “n” word or the word queer. It’s not a word a lot of people necessarily want to claim. But I’m standing in a space and sitting in a space and moving in a space where I’m trying to reclaim that word and also not wanting to cause pain to people who have experienced that word in the way I have. So that’s something I’m struggling with.
HM: …I just met a person here, we were talking very briefly. We have a friend in common in another city, and we were talking about the liberation movement. Again, to me it is such a natural alliance work. And there’s so much overlap, obviously, between the fat community, the fat liberation community and the [disability] communities. There’s more of us than there are of them. By them, I mean people who would deny us our rights and people who would sit passively by when we are struggling. There’s more of us, numerically, and I think we forget that because we’re made to feel very isolated, like we’re the only ones, even if intellectually we believe better. Those of you who live in California, I don’t know what your experience are. Where I live, I’m definitely in a culture as a queer person, certainly with other issues as well. I certainly don’t have to tell anyone here about the failings of the queer community, the LGBT community to embrace its diversity. And I find it very common. It’s very interesting, as far as body image goes. People have this attitude, “Oh well, it’s okay if you’re fat if you’re a lesbian, because lesbians are more accepted if you’re fat. That’s news to me. [laughter]
HM: I do think there is a difference in the experiences of gay and bi men and lesbian and bi women. I think there’s definitely a difference there. But I’m still a woman in a patriarchal culture. I mean, that’s above and beyond everything else. And certainly in the lesbian women’s community, there’s a lot of hostility against fat women, just like there are against women who have disabilities. And I think the femme and trans communities can be a lot more accepting, especially if they’re political, because again they experience that body body-specific oppression, and sometimes they get it more.
HM: Again, the connections we experience are very profound, and I would like to start a dialogue on a national level, because we don’t have strong communities yet locally where I live. Maybe you do here. So I would like to start a national dialogue in the fat liberation and [dis]ability rights communities.
HM: This is important. I work for the Triangle Foundation who is paying for me to be here, so I need to mention that. And they have been very, very supportive. We are the only organization that’s nationally queer-specific that is developing a policy guideline profile on size acceptance. If there are others, I would love to know who you are. We have a policy profile that guides our work. And I’m working with my staff and my administration, and they have been very supportive of us doing size acceptance work and disability work because they sent me here. And we are a statewide Michigan organization. So I wanted to represent Triangle Foundation. So that’s my time. Thank you for your attention. [applause]
Chris Bell: I believe we have 20 minutes, maybe 25 for any question….
From Audience: Amanda, if you would tell us a little bit about your radio program.
Amanda Tink: okay. My radio program is called Access O’Lars. It goes for 15 minutes. I can tell you when you can hear it if you have access to the internet because it gets played on the internet. And you can find it at www.acb.org. That’s the American Council of the Blind. And it deals with disability-related issues. We have to stick to my state Queensland because it is being sponsored by disability services in Queensland. But we are pretty general; we’ve covered issues like the Australian budget, which was handed down a few weeks ago. We have covered and still covered things on wrongful life and wrongful birth, which is really interesting and an area for all of us to be concerned about, I think. I think that’s it. Oh, I should say, I co-produce it with a friend of mine Jeff Chang.
From Audience: Thank you all. This was such a great panel and raised so many interesting questions. I had one that I just wanted to follow up with Amanda also. You made a provocative statement that perhaps there was more intolerance of blind and other disabled difference in the queer community than in dominant culture, and I just wondered why you thought that was the case?
Amanda Tink: okay. All right. I can give my personal opinion. All of the things that were in my paper weren’t my personal opinions. They were from the people that I spoke to.
From Audience: Did you follow up with that person asking why he or she thought that there might have been more intolerance in the queer community.
Amanda Tink: I can talk about it more in their perspective. They didn’t say a lot more. They were, I guess talking about things about appearance. And the concern with appearance. The queer community seems to have…. I’m trying not to be too specific because I don’t want to identify them as being male or female. But yeah, essentially things, concerns with appearance and very specific concerns or very specific things about appearance and looking a particular way to a great extent.
From Audience: I have a lot ideas about that too. One, there’s sort of the larger umbrella. Certainly it’s true and sad that everyone is in a marginalized position. Stigma from what: this is what we say. I expect someone marginalized by being queer would be more accepting with someone with another disability. It doesn’t happen. So there needs to be education in that front. But the other thing I think interesting specifically here about the visibility that you talked about in the culture is that maybe one of the ways the queer community has used to modulate their own marginalization is through being really cool, really hip, and that is something that we really use. But we need look at, as you point out, the kind of exclusions that mode generates. I thought that was a very interesting comment. Thank you.
From Audience: ….Three things. One followup from this conversation. I think everybody on the panel—a person of color, a fat person, and a blind person— will all probably agree that on-line is a very different community than in person. And that some of us have decided that on-line is safer, better space, that we will feel more comfortable being out, more comfortable flirting, more comfortable even just in dialogue when people can’t see us. But that also doesn’t question the standard or the norm which is causing us to want to be on-line because it will make us safer. I think although we should all try as best as possible to make the on-line community a safe place and a good place. I personally use it as a respite to get away from the other parts of world. We should not give up on the world that’s physical and around us. [Second,] one of the reasons that it’s a problem I think is related to this visualness of this queer community. The Deaf community is a very visual community. And they have a lot less problem with gayness and a lot more problem with disability. The Deaf community does not want to be labeled with disabled. [unreadable] They are a little bit more okay with queerness, and I think that’s because of the visualness of it. Deaf people are very visual. As Raymond [Luczak] said, you don’t need talk to get laid. You smile, you smile, go back and finish. That’s not possible if you are blind. You cannot do that smile, smile, wink, go to the bathroom. It’s a misunderstanding and you get a date. The third thing I think is really important. Heather, you said you might talk about it later.I would love you to explain why you think the phrase ability rights is a better word. I see it as a euphemism. I would not want to see us move to ability, then it’s ability centric. I like the word disability because it is in your face. It says what it is. I’m curious why you would think ability rights has any progress at all compared to disability rights.
Heather MacAllister: I would not put a value judgment on it. I use it when I’m talking to people outside of this community. I’ve had the conversation with other ability/disability rights activists. I do try to use both because people have that experience. I’ve started to use it lately. I know it’s trite saying. I really believe that. Even the word disability is ability centric because it’s saying there are certain abilities tthat we don’t have. And that those are somehow the abilities that are the central one. And what we have is dis, other. Dis is a negative word. That’s why I use that word because it’s saying that everybody has abilities, and I’m not valuing core level of abilities….
From Audience: [inaudible]
Heather MacAllister: We are trying to get to the same place. This is what ability means and everything; everyone who can’t do this means that they have a dis-ability. Rather than everyone have abilities in general. That’s where I’m coming from on that. It’s….
Amanda Tink: I didn’t mean to interrupt. Before we go into another question, I had many, many reasons for [unreadable] my paper. [unreadable] But the fact that it seems to be limited to some blind people I think is a concern. And there’s still concerns that, like I mentioned, you have to disclose. Most people that I spoke to who had access to on-line chatting felt that it was preferable to disclose their disability at some stage. And there are a couple of things with that. Just briefly. One person had a really funny experience where they disclosed that they were blind and had the other person say, “Oh, I’m blind as well.” [laughter] [applause] And the other problem can be that you might be having a really sexy conversation, and then all of a sudden, you know, you decide to meet, and it is still going well. And then you will say, “Oh, by the way I’m blind.” And you will drop back to questions of how you read the screen and how you are going to find your way to the cafe or whatever place you are going to meet at.
From Audience: I just wanted to say even at this conference the difficulty for me…. It’s not something anybody can necessarily help. But as a blind person, I did have sight before, so I do know what it is like as a gay person with vision, and now I don’t have it. So I do have that as a means of comparison. I just find that I can be in the room with someone that I have a conversation with and maybe want to connect with, but I don’t know they’re there if they don’t tell me. Of course, they may not know I’m struggling with that. But just literally struggling with the whole subject of life and why gay or queer culture might be more visually oriented. I don’t even know if it’s more so in queer culture, but it may be. And definitely life’s impression, wanting to look good, it’s a queer thing. But just literally, the way we signal each other that way. And not that they’re all the same, but they’re complicated, what we do. You know, what color is your handkerchief, are you a lipstick lover, whatever it is. And now those feelings, I now don’t have them, and I miss them.
From Audience: I guess the point is that specifically if you’re seeking other queers. I mean, I can go and stand in the middle of a Gay and Lesbian Freedom Day, and it doesn’t fucking matter. You know, I’m happy to be there. It’s not like I’m not getting anything from being there. But it’s just very difficult to make connections. I have made connections; I have little drive-by conversations, where someone will come up to me, make a comment to me, and I really appreciate they’re doing that, but I don’t know their name. I can be in the room with them later and wish to continue the conversation, but I don’t know if they’re there. Just those kinds of things. …If people want to understand what might be helpful to people that are vision impaired or blind and how to be an ally, one way is to have a conversation. You may not want to speak to them. I’m not assuming every time they’re in the same room with me, everyone has to come up to me. But there has to be a connection, or you want to have that connection or make it possible for a blind person to do that. One way to do that is simply to say, “I talked to you yesterday. I’m here in the room with you.” That has happened to me this weekend. Some people have done that, and I really appreciate it, because we’re all here because we want to make connections with each other. That’s what a conference is. And for blind people a conference is exhausting. I’m sure it’s exhausting for all kinds of people.
Amanda Tink: I just wanted to comment on that briefly and agree with everything that [was just] said. It’s nice to have people come up and continue conversations with you, to find you if you can’t find them. And I guess I just wanted to comment on finding my way around. You know, I’m a stereotype which is a very shocking [unreadable]….
From Audience: This is a comment rather than a question. Anyhow, I’m speaking as a gay person and a disabled person but also an old person. And I think there’s a lot of natural connections between the elderly community and the disability community. In fact, I think there’s hardly any issue that a disabled person faces that the elderly don’t also face. You know that expression about TAB, the temporarily able bodied? I think it might be good that young people think of themselves as temporarily young or middle-aged. And the other issue I wanted to talk about was the issue of sexuality, where aging [is] like disability and aging bodies and aging faces are like disabled bodies and disabled faces, or disfigured faces. I’m not considered sexy. We go through the same sort of psychological process to deal with that. There are lots of other connections, but I think there’s also a good chance for coalition between the elderly community and the disabled community.
Heather MacAllister: If I can add to that, the idea of having a fat body is apparently unhealthy and unsexy is total bullshit, number one. And number two, it’s really part of aesthetic and queer culture. And while I have the mic, I would also like to say that something I didn’t cover earlier in my time was the medical pathologizing that we need to be fixed. That is one of the most compelling pieces of our experience that we can talk to each other about and build a possible coalition around. People in my community certainly are very poorly underserved by the health industry and have had very hostile, life-threatening experiences. We need to hear each other’s experiences on that and do something about it.
From Audience: I do have a radio program as well, dealing with queer issues, also with a special emphasis on issues of disability. You have to get close to this thing, issues of disability, sexism, ableism, all the “isms.” I identify with everything that was said on the panel, because I feel there is a part of that in me. I am a fat person, and I do feel that discrimination…. But I also think about that in terms of being a person without an “ism” and how if people do not know your race, you’re discriminated against in that way as well. And being a blind person, visually impaired, all of that, everything that was said I feel. And I heard, and I agree with it. We do live in a community, a gay/queer community, that is intensely very visual. I mean, even the act of learning itself is very visual, which is totally difficult for me, because everything just is based visually, and I just don’t get it. I do feel that the queer community is more ableist, and I feel that way because of the visual component that goes with it and the obsession—I’m going to use that word, because that’s what it looks like to me—with the body. I’m going to make this real quick. The thing that keeps me out of the community socially, because I’m very involved politically in the blind community and in the queer community in Atlanta, but the thing that keeps me apart socially is that visual component. And also I feel that people have this fear that—and others of disability may feel this way as well—you’re going to need something or they want to stay away because you’re going to ask them for a ride, a ride home or anything like that, because you don’t drive. I get that feeling very much. I do get invited to some things socially, but for the most part I feel like going to clubs and everything. I don’t know who’s there, and no one comes up to me, because they assume that I see them or…. I don’t know. And that makes me very uncomfortable, going into a space and not really knowing who’s there, and because I am involved in the community, I’m sure I know some people who are there who just don’t come up to me.
From Audience: I had a question which you just touched on. I was wondering if some of the resistance in the fat community to making connections with the disability community comes from the total resistance to the pathologizing of our bodies and the medical assumption that there is something wrong with our bodies because we’re fat, and, “Oh, my god, if we make that connection with those people, that’s going to rub off on us somehow.”
Heather MacAllister: I’m glad you brought that up. I think there’s two things there. Many fat women don’t think there’s anything medically wrong with being fat inherently, that inherently it’s not a bad thing. And I think there’s also a lot of that in the disabled community. So I think both of those things are going on, unfortunately. That’s why I want to start this dialogue. One of my proudest moments was when I did a fat workshop at the National Women’s Music Festival and there were some people there in the national disability rights movement. They gave immediate for [unreadable] this solidarity thing. To me that was one of the best workshops ever, because we were in this together and sharing. Also, as I said before, a lot of us who are fat have ability issues and accessibility issues, and we develop…. You know, it’s really complicated and a lot to talk about, but maybe we can talk about right after this. Thank you.
From Audience: Well, I just wanted to say to Heather, you know, being a fat woman in the gay community is tricky, because I think there’s class and I think there’s all this kind of stuff that goes on. I’ve been involved in liberation stuff. I’m older. I’m going to be 55. Oh, this is what it’s going to be like for me. But your body gets like this. They say, “Well, you have a disability? You don’t look like you have a disability.” I have a brain injury, and I have glitches. “What are you here for? You can talk.” It’s like the looks-ism. That’s the whole part. You embrace each other, but it’s just like I really hope that we embrace more people of color with all the stuff going on in the world. There’s fat people oppression, there’s this oppression, but the oppression of not caring about each other, just that.
From Audience: Thank you guys for being here. I wanted you to know that it was, I guess, a 3,000 mile journey for me to get here, and I came to this particular presentation this morning because there was supposed to be a panelist speaking on denial and degradation in regards to mental illness. Do you have any idea why this panelist is not here, why there is no discussion of this issue? I see hands waving on the side of the room. I know I’m not the only one who has this concern. I want to comment while I’m here [unreadable] [about] invisibility. The only mention of mental illness type issues that happened in any kind of presentation-type setting were related to legal issues for a lawyer who represents people who are institutionalized, which I have never been. There is a wide variety of people with mental health and neurological and other conditions, and we are not all the same by any stretch of any imagination. Let’s see. It seems there was one other thing. I got one positive vibe from one of the performers last night, although I don’t think a lot of members of the audience really appreciated or understood what she was communicating. I very much enjoyed that. But having come so far geographically, having had a lot of people spend money for me to come here, having to experience what I personally have had to go through to be here to stand at this microphone and ask this question, I just wanted to say that I feel it’s poignant that the lecturer who was speaking on denial and degradation is not even here. That’s not about that person; it’s just about that I wonder what we need to be doing as a queer/disabled community so that there’s less of the denial and the degradation. Thank you. [applause]
Chris Bell: I’m going to address that very briefly. There was a remark made at the beginning of the panel that, unfortunately, Michael Robinson, who was to deliver that paper, as a long-term AIDS survivor, is having one of his, what I like to call, AIDS days, where he was feeling it. His attorney did come by and mention that to Amanda and myself earlier. His attorney was going to be part of the [unreadable] action. But in keeping with your overall and larger concern, I think that’s a very viable one. You may want to speak to the conference organizers, so in the future that will be brought up. [announcements]
Chris Bell: [It’s] not necessarily easy for someone with a mental disability or illness to organize. I apologize, and I just want to give you some options, after traveling 3,000 miles. A comment: Instead of the person who just spoke individually bringing it to the conference organizers’ attention, that we all do that. And I agree. With that in mind, I would like to thank Heather and Amanda for their presence. This has been a particularly enlightening experience for me personally…. Thank you for your attention and for all of your comments here.
[end of RTC transcript]