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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Queering Disability and Disabling Queerness: A Panel on Access

As part of Peterborough’s Queer Pride Week, I organized a panel with Tessa Smith featuring Fiona Patton, Shannon Avery, Ronnie Ritchie, and myself, Derek Newman-Stille. Our panel was created to bring access to the way that our Queer community and Disabled community overlap while bringing attention to the fact Pride events in most locations tend to be inaccessible or only feature able-bodied people.

We wanted to explore not just the way that Queerness and Disability come together, but also the way that these identities can conflict. We explore the ableism in Queer “safe spaces” and the homophobia in Disabled “safe spaces”. We wanted a panel of diverse Queer people with disabilities and found people that occupy many different roles in our communities from writers to artists to students to activists.

We want to acknowledge the support of Peterborough Pride, the Rainbow Services Organization, and Traill College at Trent University for their support of this event.

This video was filmed at Bagnani Hall at Traill College, Trent University in Peterborough Ontario, Canada.

Please allow time for the video to appear

Queering Disability event

Storied Recovery

Storied Recovery

A review of Monique Bedard (Aura)’s “Constellations of Stars” in (Don’t) Call Me Crazy: 33 Voices Start the Conversation About Mental Health Edited by Kelly Jensen (Algonquin, 2018)

By Derek Newman-Stille

Located in a collection of stories about mental health called (Don’t) Call Me Crazy, Monique Bedard (Aura)’s poem “Constellations of Stars” reveals the way that mental health, identity, and landscape can interact with each other and speak to each other. Society pretends that mental health happens in isolation, but Bedard, a Haudenosaunee person illustrates the deep connection between colonial violence and what is coded as “mental health” issues.

Bedard uses poetry and word play to explore the relationship between body, land, identity, and the notion of storied existence. She begins by revealing to her reader that her body is a map of scars that tells a story. Her body is implicated throughout the poem, woven through her words and experiences. This is an emBODied work.

“Constellations of Stars” weaves together Bedard’s own narrative and the narrative of indigenous people in general, illustrating that there are shared experiences and that she feels the pain of colonial violence both from the people that came before her and in the violence, erasure, and loss of land that she has experienced. Bedard’s voice is a multiplicity in one, a shared truth. She explores the theft of indigenous lands, the pain of separation in residential schools, the theft of indigenous children by people who tried to erase their culture, missing and murdered aboriginal women, the erasure of languages, culture, and history. Her story is her own… but it is also larger than a single story.

Bedard explores the idea of “witness” – the power of the act of speaking about things that are being erased, giving voice to situations that were silenced, and enacting truths to counter colonial lies.

To discover more about Monique Bedard (Aura), visit her website at https://www.moniqueaura.com

To find out more about (Don’t) Call Me Crazy, visit https://www.workman.com/products/dont-call-me-crazy

Amulets

Amulets

A review of Heidi Heilig’s “The Long Road” in Unbroken: 13 Stories Starring Disabled Teens (Farrar Straus Giroux, 2018).

By Derek Newman-Stille

Heidi Heilig’s “The Long Road” begins like many trope-filled stories about disability does – with a self-loathing disabled character seeking a cure. The trope of “the cure” and especially “the magic cure” is built into a large number of fantasy stories, creating a quest for characters around the discovery of a cure, or having characters use magic to transform their bodies into normate bodies.

The difference with Heilig’s narrative, is that although her disabled narrator begins a long quest with her family wearing protective amulets to ward off evil (since her disability is seen as a marker of evil) toward Persia where her family believes there will be a cure… Heilig switches the narrative, breaking from the typical fantasy “magical cure” trope and instead allowing her character to gradually realize that the notion of “the cure” is a problematic one that causes her to view her body as a problem to be “fixed” and instead starts to question the idea of normalcy, realizing that bodies are far more complex than her family had led her to believe. It is only through finding a disabled community and companionship with another disabled person that Heilig’s protagonist is able to begin to re-assess everything she has taken for granted as “truth” for so long.

Heilig reminds her readers that we frequently find knowledge and new ideas within our own disabled community and that we construct our own community as we find other people like ourselves who don’t make us feel like outsiders or exiles. Heilig makes the exile literal by having her characters wander the desert in search of a cure, believing that they can return home “normal”, but although her character searches for normalcy (which is so often the fantasy quest attributed to disabled characters), instead she finds the power of community and challenging her assumptions. Rather than a physical transformation, Heilig presents her readers with a transformation in thought and perspective, an awakening to new possibilities for disabled existence rather than the erasure of disability.

To find out more about Unbroken: 13 Stories Starring Disabled Teens, visit https://us.macmillan.com/books/9780374306502

To discover more about Heidi Heilig, visit http://www.heidiheilig.com

When A Kiss Isn’t Just A Kiss

A review of Jax Jacki Brown’s “The Politics of Pashing” in QDA: A Queer Disability Anthology edited by Raymond Luczak (Squares and Rebels, 2015)

By Derek Newman-Stille

Jax Jacki Brown’s autobio story “The Politics of Pashing” explores the visibility of Queerness and Disability and the politics of staring. Jax explores her ability to reverse staring that happens as a Queer wheelchair-user by “pashing” (kissing passionately) in public and playing with her “eye-catching” nature by dying her hair red, wearing a rainbow neckerchief and overlaying her body “with signals of queer sexuality”. Instead of being the object of staring by an ableist, heterosexist society, she takes power away from people who would use their ableist glare by instead reversing the stare and making her body a display of fierce sexuality.

Jax questions whether people are staring at her because of her Queerness or disability, inviting the question of which identity attracts the most stares. She determines that people are staring at her because of her disability and their assumption that disabled people are un-sexual. She tells her readers that she resists this de-sexualization by presenting people with the visibility of her sexuality – by kissing passionately in public.

Often folks with disabilities and Queer folks are taught not to show our sexuality in public. We are taught that holding hands, kissing, and hugging are too icky for the straight, able-bodied cis-gendered public to handle. We are relegated to private spaces. A lot of that “teaching” happens through the stare… and, more specifically, a form of the stare that is openly hostile – the glare. We are Othered from public spaces, and it is a radical act to kiss in public, to demonstrate our love and sexuality in spaces that are hostile to anything that doesn’t conform to a heterosexist, ableist ideal. Jax’s acts of kissing seem like such little things – just a kiss – but when our kisses are treated as threatening, the act of kissing has power. It asks the question of why we are excluded from public spaces, it gives us power over the way we are stared at, and it remakes public space into a space where we can assert our presence and resist erasure. She tells her readers “Until disability and sexual diversity become more visible in the media, my kissing in public will never be a simple act. My pashes will always be political, enacting a complex interplay between my queer and disabled identities, and my pride in these two parts of myself.”

To find out more about QDA, go to http://www.squaresandrebels.com/books/qda.html

To discover more about Jax Jacki Brown, go to http://fukability.blogspot.com

What Is It Like To Be Represented in Film, Television, and Books?

What is it like to be represented in film, television, and books?

By Derek Newman-Stille

When I see myself in a character, when I encounter a character who is like me – queer or disabled (or maybe even both like I am?)… but written in a way that represents those identities, not filled with tropes meant to reduce us to symbols… I feel a sense of ecstasy. My heart starts to race. I start to connect with the character, start to feel their passions.

And I think to myself – is this what it is like for straight, able-bodied, cis, white people to read?

I imagine what it would be like to live in a world where one is saturated with representations of oneself…. where every magazine, every book, every film, every television show is like a mirror.

This is what we under-represented people feel when we encounter representation of ourselves, when we finally see something in our media that could be made to reflect (even slightly) ourselves. Suddenly our world is opened up to potentials. When I see people like me represented, I finally feel a sense of belonging, a sense of really being part of the world and not it’s dirty little secret that no one wants to talk about. I feel a sense of community, a welcome, an invitation to participate, to be part of the world.

I feel like I can exist.

I wonder if this is something that other under-represented people feel when they see themselves reflected. Do they also feel like a world of possibilities has opened up? Do they get the same heart-racing, open-eyed, pausing breath sense of excitement and wonder? Do they feel that weird, uncanny, tingling magic through their bodies at the moment that they see the potential for representation, the possibility, the cusp of belonging? Do they feel the clouds of isolation break? Do they feel the sense of excitement that for once our stories are THERE are HERE… that our stories are shaping something, carving out a space for us, a tiny cave in a wall of ignorance and oppression?

Do others sigh with relief that the character that we are told is like us doesn’t end up being a shallow reflection of society’s bigotry? Do they bite their nails as they see the words “And he/she was Queer/Disabled/Trans/Indigenous/Black/Of Colour/An Immigrant/Fat” and wonder if this is going to the the time that someone sees deeper than the portrait society paints of us and see that we are standing right behind that portrait, trying to push it aside so we can EXIST?

I crave representation. I crave good representation. I crave deeper thought about what people like us are like. I crave creators like us creating characters like us. I want… I need to feel like our marginalized stories are out there.

And I know what happens whenever I say I want marginalized voices represented. I know I will hear from people some suggestions of “have you seen this one show that was on for half a season that had a character who was Queer?” and “before the author kills off this character in this book, you should see how much like you they are” and “there are so many marginalized people represented out there that it is really the straight, white, able-bodied, cis man who is underrepresented”. I know I will hear them because it happens every time. I know I will hear them because people in positions of privilege always want to believe that token representations are enough. They want to believe that if they just show us ONE image, we will go back to complacency… that we won’t still crave MORE. They want to share that one representation of us because they enjoyed it. Because it was new, innovative, different. But if so many people like our representation, like our stories, why aren’t we given much of a platform? Why aren’t there more representations of us?

It feels like we are always being told “isn’t that enough?” Well, no, it’s not enough. We still feel that sense of isolation when we are surrounded by an ocean of representations of the straight, white, able-bodied, cis man even when we can see that one speck of a life raft of representation out on that ocean. That one, precarious, uncertain, singular representation isn’t enough to hold onto in a world where we are drowning in representations of people in power, people who make decisions about our lives.

We crave representation because we not only WANT it…. we NEED it. Because it is rare, because it is precarious, but mostly because it makes us feel a sense of possibility and wonder, a sense of belonging.

Disability Tropes 101: The “Tiny Tim”

Another of my guest posts over on the Spoonie Authors’ Network – here I discuss the problematic Tiny Tip Trope of Disability as part of my Disability Tropes 101 series

Spoonie Authors Network

Disability Tropes 101 featured image Loose leaf paper with the trope topic: The “Tiny Tim” (by Derek Newman-Stille) Heading above it reads: A Spoonie Authors Network Series, Disability Tropes 101. The O of tropes is the wheel of the accessibility symbol.

The trope that I call the “Tiny Tim” is the creation by an author of a disabled character whose exclusive role is to be an object of pity and in need of charity. I have used the name of the best known of these figures from Dickens—”Tiny Tim.” Tiny Tim doesn’t have a life outside of his role as an object of pity, and his entire existence is about teaching an able-bodied man to be more charitable and share his wealth. 

These figures are obviously not limited to literature and, frequently, charities rely on this image when they launch funding campaigns, trying to evoke sympathy from possible donors. Charities have frequently relied on…

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Disability, Deafness, Ageing, Queerness, and Other Complicated Embodiments