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An Interview with Elisabeth Harrison, PhD Candidate in Critical Disability Studies at York University

An Interview With Elisabeth Harrison, PhD Candidate in Critical Disability Studies at York University.
By Derek Newman-Stille

Q: So, to start our interview, could you tell us a little bit about yourself?

Elisabeth (She/her or They/Them): Sure! I’m a PhD candidate in Critical Disability Studies at York, where I’m researching trans, genderqueer, gender non-binary and non-conforming people’s experiences in the mental health care system in Ontario. I’m 33, and I’m a white AFAB (Assigned Female At Birth) genderqueer femme. I come from Brockville, ON. I also identify as a psychiatric survivor, which is part of what brought me to the work I’ve been doing. Besides that all, I have a day job at the Centre for Independent Living in Toronto where I work for the Direct Funding Program.

I want to add at the start of our interview that my perspectives are my own and do not reflect those of my employer

Q: What got you interested in exploring Trans, genderqueer, and nonbinary experiences of mental health care?

Elisabeth: I think it’s a little bit of “me-search,” which is a phrase one of my research participants introduced me to.

Q: I really like that term “me-search”. What is it like to do research that brings yourself into the narrative? So often academics pretend that they research objectively, but there is something powerful about involving the personal in our research.

Elisabeth: Isn’t it a good phrase? The person who introduced me to it explained that it’s often used in a criticizing sense in their (allegedly “empirical”) field, but I liked it because it reflects the way that we bring ourselves to our work, and I think that’s important to acknowledge and it isn’t a bad thing. Obviously, as a community member I have some kinds of knowledge that can come with personal experience. But of course, this isn’t to say that my experience is also quite limited and shaped by the specificities of my identity. So even in doing “me-search,” I’m learning a lot about those limitations and learning so much from people who have had similar and different experiences to mine.

I was interested in this topic basically as a result of my own difficult experiences in what I perceived as a sexist, heterosexist and transphobic (not that I even knew that word at the time) mental health care system. The experiences I had seemed to be much more oriented toward control and maintaining unequal power structures than toward providing support or opportunities to heal, so I wanted to look into some aspects of that in my work.

Most of those experiences were when I was a teenager, so my knowledge was limited and I think some things have changed (hopefully) since the early 2000s, but that’s what I was starting from.

My undergrad and my MA are both in Gender Studies, and I was introduced to Critical Psychology and a bit to Mad Studies there, then I went into CDS to focus a bit more on that.

Q: The medical profession has incredible power over our identities and ways of knowing ourselves, particularly since they shape text about us. Yet they also claim objectivity in labelling us. What are some of the problems that come with this power and ability to create labels about us?

Elisabeth: I understand that labels are ways of organizing information. In some ways they can be helpful and help us communicate with each other. So for example, when I learned terminology like “genderqueer” and “enby” (nonbinary) for the first time, I was like, “Yes! That is so helpful! That helps me understand what’s going on!” At the same time, when labels are applied by people who have institutionalized power to people who have less power, when those labels come with so much force, so much stigma and so many unacknowledged limitations, my view is that it’s often a lot less helpful and it can even be harmful for people.

When it comes to information about mental health, I wish that more people knew that the way the DSM has been constructed has always been a thoroughly political project.

Actually, I think that many of us in the TQBLG community do understand that, since people remember the process that got “Homosexuality” removed from the DSM. But generally, I think the idea that “mental illnesses” are diseases like any other (“just like cancer or diabetes”) is the more dominant view.

Q: So often our mental health narratives don’t include our own voices. What benefits can occur when we are able to narrate our own lives?

Elisabeth: I think that the power to author and tell our own stories, and to create communities in which our stories are respected and understood are incredibly important. Research-wise, this is the primary reason why I chose a narrative-based methodology and also did digital storytelling work with participants. Everyone should be able to tell their story, and should be given/should seek out the information they need to understand the stories of other people, and the big stories that impact all of our lives in different ways.

It’s hard to tell your story when you don’t know why the things that are happening to you are happening, you know? And it’s hard to understand stories from outside your experience without that knowledge as well.

Q: Could you tell us a little bit about the digital storytelling work you were doing?

Elisabeth: Absolutely. I have two supervisors for my dissertation, Dr. Geoffrey Reaume and Dr. Carla Rice. Carla is the founder of the Re-Vision Centre for Art and Social Justice, which is a research centre focussing on using digital media to enable oppressed people to tell their stories. ReVision has moved toward supporting people to create different kinds of videos, but their methodology started with the digital storytelling approach, and I was trained in that by the Centre so that’s what I decided to do with my own project. Digital Storytelling is a process where people are supported to tell a 3-5 minute long story using voice, music and visuals. The elements are created brought together by participants during a workshop, with support from facilitators who might be videographers, photographers, filmmakers, etc. It’s an arts-based or arts-informed method that allows people to choose a story and present it in the way they choose, which I think is awesome.

I should mention as well that the Re-Vision Centre has incredible equipment that makes this kind of work possible. I was very lucky to be able to access these resources.

Q: When you talk about Dr. Rice and Project Re-Vision, I can’t help but think about Artivism (art activism) and the power of finding new and creative ways of expressing information. Do you find that digital storytelling gives people a chance to express things in a new and creative way? … Especially since some of this material may be really challenging to express in traditional methods.

Elisabeth: What a great parallel! Yes, absolutely. I think that art is so powerful — the way people engage with art is often different to how they might engage with academic prose. Actually, I think most people don’t necessarily engage with academic writing very much, especially once (or if!) they’re out of the academic world. But most of us engage with art in various ways. We listen to music, we look at visual art, we constantly engage with design in our lives, we watch movies, etc. So for people to tell their stories in a way that is likely to be more accessible to more people is really helpful, both for the creators themselves (as they have quite a bit more control over the process than they would with, say, how an interview is coded and analyzed and presented by a researcher) and for potential audiences. I think that the process of storytelling is also really interesting. Many digital story creators haven’t made a video before and may not typically engage with any of the elements of the story at all. Of course, some participants are artists and that’s fantastic, but the process is organized in a way that it’s accessible to non-artists and even to folks who may not be super familiar with the kinds of technology used in the process, so I think that inevitably allows for the exploration of new ways of thinking about expression and how to convey and represent the information and meaning and feelings and resonances that they want to put into the world through the story.

I did not make a story in my own project because I was facilitating the workshop, but I’ve made two digital stories in other Re-Vision Centre projects. I like art, but I don’t really consider myself an artist. I’m absolutely not a practicing artist in any way whatsoever. So it was really interesting to have a chance to think about the elements of sound and visuals and timing and tone that I don’t typically consider too much when I’m basically writing essays.

I do try to make my academic writing as clear as possible, and there’ll very occasionally be a sentence that I think is kind of nice, but beyond that the other elements just aren’t there.

Q: Nicely said!! On a personal note, I really wish I could have taken part in your study. It sounds like you have created a powerful space for Trans, genderqueer, and non-binary folk to talk about their experiences as psychiatric survivors.

Elisabeth: I wish you could have as well! I did try to create that kind of space. It’s often just a really hard topic to discuss. I am extremely grateful to all the people who spoke with me and made stories with me, I am so, so, so appreciative of their trust and openness and generosity.

It’s been hard in the past while, I did my interviews a couple of years ago now, and I think a lot about how all the developments around this issue are impacting the people I met. It’s been a rough go lately and its just so unfair.

Q: A lot of readers may not know about psychiatric survivor narratives or mad pride. Could you tell people a little bit about the background of these terms and, especially, what they mean for you?

Elisabeth: The terminology of psychiatric survivor has been around for quite a while (I believe since the 70s and 80s) and it’s a phrase used to challenge the idea that mental health care is, well, care, rather than, say, coercion or incarceration or just unhelpful or uncaring.

Mad pride, or the Mad movement comes from another, related perspective, that the kinds of states or experiences or ways of being conceptualized in the medical model as illness aren’t always inherently negative, but could instead be considered as just different from what gets constructed as “normal.” For me, I relate to these terms because I think they do a lot to politicize the experience of being pathologized, and to politicize difference and distress. And I think that distress, especially, is very, very often rooted in experiences of oppression, violence and injustice, which is something that the medical model doesn’t usually concern itself with.

Q: You mentioned the tough past couple of years and I can’t help but think about the impact of the Ontario Conservative Party’s decision to not recognize gender identity and what this may mean for people like us and those involved in your project. What sort of influence may this change have in Trans, non-binary, and gender queer lives and our psychiatric encounters?

Elisabeth: So basically, by pulling this garbage move at their party conference, they’ve done a lot of damage even without having to drag this bullshit through the courts and/or invoke the notwithstanding clause. Obviously it would be even worse if they did that, but the way that they did this has allowed them to express contempt and hatred toward our community and embolden bigots without all those pesky protests and legal bills. Personally, I have essentially zero problem with being disliked or misunderstood by people like Granic-Allen and/or Ford, but it’s very upsetting and disturbing to think about what this is going to mean for younger members of our community and for all the members of our community who face harassment and violence and discrimination on a daily basis.

Q: I can’t help but think that just discussing the possibility of disregarding gender identity will inspire acts of Transphobia and gendered violence by the public (and possibly by health care professionals). When people in power feel safe to express Transphobic sentiments it emboldens people who believe Transphobic ideologies to be more open about them as well.

Elisabeth: I have to situate myself, too. I’m an AFAB femme with a feminine gender presentation. Unless I tell people, people don’t typically know or guess or assume that I consider myself non-binary. I have been trying to come out more, and I try to speak out about the issues facing the trans community as someone who could be considered as having an identity that’s under the trans umbrella, and also as a person who is trying to act in solidarity with trans/enby/genderqueer people who are maybe not read as cis, or whose gender presentations are interpreted as non-normative. I’m extremely cognizant that the space I occupy in society is completely different from the kind of space that someone who, for instance, faces transmisogyny, would be.

I completely, completely agree with your analysis, Derek. I think that’s part of why they did this.

Q: Trans experiences with health care tend to be fraught with dangers, especially since many medical practitioners still believe Transphobic ideologies. This has resulted in a lot of Trans people not seeking out health care even when health care is considered urgent. What are some things that we, as a community, can do to shift the dialogue around health care for Trans folks and, especially, mental health care access? Or is there other options outside of the psychiatric system?

Elisabeth: That’s a very tough question and a tough reality.

Q: I was thinking the same thing. It’s something I have been struggling with finding answers to lately… and there aren’t a lot of answers out there.

Elisabeth: We need to keep doing what we’ve been doing as a community, which is to continue our activist work to ensure that our realities are as much as possible understood by those in power, to take up decision-making roles and shape the policies ourselves (which is arguably and in part what happened with the shift away from GID and toward GD, which has been helpful in quite a number of ways). We can keep advocating for better access to non-medicalized or less-medicalized forms of mental health care, such as counselling and psychotherapy. And beyond that, we can keep doing our work to improve or change the aspects of society that lead to distress for so many of us. So part of that is to promote the acceptance and celebration of gender diversity! And part of that is to advocate for access to housing, food and enough resources to lead a decent life, whether that comes through income security programs and/or employment and/or the dismantling of the neoliberal capitalist system. Which is clearly a lofty goal, but it’s so often the conditions of people’s lives that lead to distress, or that make differences in ways of being so hard to live with. We are told that we have to be productive all the time, that we have to be “regulated” all the time, there’s very little space for difficulty and difference, especially if you’re situated at the nexus of various axes of oppression. There’s no time, there’s no patience, there’s no opportunity, and there’s no tolerance. And that’s not okay at all.

I have to say too that I feel like as someone with more privilege in a lot of ways, this work is on me. And it should be on people working in solidarity with the community. This work can’t keep being put on the backs of the most marginalized people in our community.

In practical, more immediate senses, I’ve learned a lot from working with Dr. Carla Rice about how art can be used to influence health care provider perspectives. So it’s also about getting in to medical schools and health care institutions with pieces like the ones that the folks who participated in my project created, getting in with personal stories about what needs to be done differently, and helping people who are already in the system to learn and do better.

Q: Nicely said!! It sounds like getting our narratives out there is important not just for us to see ourselves represented, but also to shift social consciousness, especially for care providers. What are some ways we can get our voices out there?

Elisabeth: I definitely think that’s true. Well, the kind of work you do to promote disability studies perspectives online is an amazing example! Getting critical perspectives out into the world is a huge part of the process!

Q: I am reminded of projects like “Graphic Medicine”, who are trying to get “patient” narratives out there in graphic novel form to help medical professionals think about the lives and experiences of their patients. In what ways can art play a role in educating?

Elisabeth: Oh, great point! All kinds of art are good ways to learn about people and their lives. Derek, legit, they need to hire you to teach at a medical school. For real. The way you use art and culture to bring out so many dimensions of life and experience for your students, I truly think that’s what health care providers could use! Of course we can also present stories at health care institutions and schools in the meantime.

Q: Elisabeth, imagine how voices like ours could really change medical perspectives.

Elisabeth: Right?! Challenging sanism, ableism, transphobia, queerphobia all at once! And there need to be even more voices and more perspectives, to shift thinking on racism, colonialism, transmisogyny. The people from our communities should be at the forefront, telling the stories of what our communities have been dealing with and the incredible things that many of us have done even in the face of such intense oppression.

Q: I want to personally thank you for all of the work you are doing and all of the work you have done. You have done so much work for our community and I really appreciate you taking the time to talk about your work here. Is there anything further you would like to say to readers?

Elisabeth: Thank you so much, Derek!

It has been an honour to speak (/write) with you tonight! Thank you so much for inviting me, I really appreciate it. I always learn so much from you!!

 

Q: I like the way our conversations are always so generative. They get both of us thinking in new ways. I can’t help but think what medical practitioners could get out of collaborations and conversations like this.

 

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Elisabeth Harrison (she/her) is a PhD Candidate in Critical Disability Studies at York University. Her dissertation research is about trans, genderqueer and non-binary people’s experiences with mental health care in Ontario. She also does work in fat studies.

 

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Able-Bodied People Speaking ABOUT Disabled People

By Derek Newman-Stille

Far too frequently, able-bodied people feel that they have a place to talk about disabled people. They use different justifications for this act of narrating our bodies to us, but the bottom line is always the same. There is an assumption that our bodies are open to public debate, that we are resigned to expertiseism about our bodies not only by medical practitioners, but anyone who feels that they have a stake in narrating us. 
I see this most commonly when it comes to medical practitioners, whose power to narrate our bodies is so strong that we have to depend on their assessment of our bodies to get access to basic accommodations. Our own narration of our bodies is never considered enough to guarantee that we will acquire everything we need. In university I observed this with the accommodation letters that I was forced to bring to my professors. My own narration of my bodily needs was not enough to be considered appropriate, so I needed to bring a letter detailing my needs in order to get them. Catherine Duchastel de Montrouge brought up the need for accommodation letters during her recent talk at the Canadian Disability Studies Association and discussed the fetishization of the accommodation letter for our post-secondary education system. Duchastel de Montrouge talked about being told by professors that she shouldn’t need accommodations, that she would be denied accommodations because the “professor knows best”, and the suspicion of accommodation letters by most professors. When talking to her, I likened the accommodation letter to a passport, allowing us into a space that we are considered unwelcome in and a space where we can have our rights withdrawn at any time. We depend on these accommodation letters for access to education, but they are dependent on the physician writing them, a university office drafting their final copy, and a professor deciding to abide by these letters. 
This is, of course only one example of the need for physician letters, since disabled people also need the word of a physician to access disabled parking, be able to use accessible seats on aeroplanes, have access to disability accommodation, and in order to access government support funds for people with disabilities. 
I have frequently had people narrate my body to me after seeing me walking with a cane. I have been told “if you work hard enough, you won’t have to use that any more”, been asked “why do you think you need a cane?”, and been told that I “look normal enough”. These narrations happened by strangers, which frequently occurs for disabled people. Able-bodied people have been told through their media that they have a right to narrate disabled people’s bodies to them, to tell us how to live our lives, how to be disabled in this world, and how we should act to make them more comfortable with our presence on the landscape. 
A friend recently came back from a writers’ conference where she was the only disabled person on a panel about writing disability. It should be abundantly clear to everyone that disability is generally not written of well in our literature and popular culture, so I am amazed at how little people want to listen to disabled people give input on their bodies and how to write them well. She noted that all of the able-bodied people on the panel tried to tell her how disabled characters should be written, replicating tropes about disability. They even waved their hand at her to say “people like you” when talking about people with disabilities. 
I have experienced similar issues when able-bodied people have asked me to read their stories about people with disabilities because they generally respond to my reminders that the character is presented problematically by getting angry and saying things like “that is how I need the character to be for the novel to work” or “but it’s not really about their disability, its about what it means for their society” or “but I saw a meme on facebook that said this” or “I talked to someone who was disabled and they said it was okay to write people like them this way” or “but I read a book on it by a doctor and this is what they said” or “but I tried to make this character a nice person, isn’t that enough?” This is one of the reasons I have become more hesitant to read people’s manuscripts, especially when they portray disabled people. I know that little will shift when I ask them for more, ask them to do better, or ask them to listen, pay attention, and understand. 
Able bodied writers and media consumers seem resistant to hearing back from the people they write about. Our disabled voices only complicate the easy symbolism that they write onto our bodies, our three-dimensionality only complicates the simple one-dimensional characters they want to write.  We make it hard to write us when we speak up.
I think that bears repeating: We make it hard to write us when we speak up.
I think this could be a call to action. A call to able-bodied people to actually listen to us, a call for convention organizers to have disabled people speaking about disabled characters, and a reminder of the call “nothing about us without us”.