All posts by dereknewmanstille

Derek (they/them) is a PhD ABD in Canadian Studies at the Frost Centre for Canadian Studies, Trent University. Derek's research is focussed on representations of disability and alterity in Canadian Speculative Fiction. Derek is a 9 time Prix Aurora Award winner for their website and associated radio show Speculating Canada.

The Right to Say “No” Versus Denial of Service for Disabled People

By Derek Newman-Stille

The medical model of disability presents disabled bodies are things that are broken and in need of being fixed by a medical professional. Our bodies are presented within the medical model as incomplete and flawed and our knowledge and experience of our bodies is treated as irrelevant information. This poses a considerable issue with disabled access to medical practitioners. Many of us have disabilities that require constant contact with doctors. This puts us completely under the control of that doctor and subject to their assumptions about our bodies, which are largely shaped by the medical model.

Doctors regularly give up on disabled patients, especially when we have long term conditions that cannot be “fixed”, but are persistent. This happens so often that we have a term for it – “patient abandonment”. Patient abandonment generally refers to the process by which doctors terminate their work with a patient. However, it can also refer to denial of service.

Disabled people frequently face the threat of withdrawal of care if they are “non-compliant”, which is a lose definition applied to situations where we say “no. That is not in the best interests of my health”. Various patient rights organizations have expressed the need for firm policies around patient rights to access to care. The Patient Bill of Rights Ontario states:

“Every resident of Ontario has the following rights:

1. The right to receive all necessary health care services in a health care system that,

i. is accessible, universal, comprehensive and publicly administered and funded,

ii. offers freedom of choice,

iii. provides timely treatment,

iv. does not allow personal income to determine access to health care services, and

v. recognizes that every provider of health care services is a valued member of a multidisciplinary health care team.

2. The right to give or refuse consent to the provision of health care services.

3. The right to all information necessary to make fully informed health care choices, including information about who will provide particular services and about the qualifications of those providers.

4. The right to receive publicly funded health care of high quality in the home and in the community as well as in health care facilities.

5. The right to receive information, whether in a health care facility or in the community, about choices that promote good health and measures that prevent illness and accident.

6. The right to be dealt with by health care service providers,

i. with courtesy and respect,

ii. in a manner that recognizes individual dignity and privacy and promotes individual autonomy,

iii. in a manner that recognizes and responds to individual needs and preferences, including those based on ethnic, spiritual, linguistic, familial and cultural factors,

iv. without mental, physical, sexual or financial abuse.

7. The right to participate in any assessment of personal care requirements and in the development of plans for care.

8. The right to make complaints, raise concerns and recommend changes without fear of interference, coercion, discrimination or reprisal.

9. The right to be informed of,

i. the laws, rules and policies affecting providers of health care services, and

ii. the procedures for initiating complaints about providers of health care services.

10. The right to confidentiality of health care records in accordance with the law.” (https://www.ola.org/en/legislative-business/bills/parliament-38/session-1/bill-22)

And yet these rights are regularly violated by medical practitioners working with disabled people.

I want to give a personal auto-ethnographic example about my experiences with my own doctor. I was initially excited to work with this doctor because she does work around the LGBTQ2IA community. But during our first meeting, I mentioned that I am a disability advocate and was organizing a talk around health and LGBTQ2IA identities. She replied “No. You disabled advocates constantly demonize doctors. Why would I want to experience that”. I tried to explain that this was not the case, and that I was hoping to open an important dialogue around LGBTQ2IA and Disability. Following this, I was subject to hostility during each of my encounters. A lot of this hostility centred around the doctor telling me that my disability is either in my head or due to my diabetes. My disability is spinal, so I started bringing my MRIs with me to appointments to show them to the doctor each time.

However, I went in to the doctor’s office in early March of this year and met with one of the nurses on her team. I disclosed to the nurse that I had attempted suicide and wanted assistance changing my medications. The nurse noted her concerns when she saw cuts up and down my arms and sent a message to the doctor to say that my suicidality was a concern and that we should have a conversation about my medication. The doctor told her that the suicidality was likely due to my blood sugars (I am diabetic) and then said that she wouldn’t reassess my medications until I got a blood sugar test. I wear an implant to assess my blood sugar and check it multiple times per day. The nurse sent another message to the doctor informing her of this and she replied that there was nothing I could do without a blood sugar test and to just send me away with a blood sugar test form.

Blood sugar is not a primary factor in suicidal ideation and I am also on antidepressants and an anticonvulsant. These were not reassessed.

This occurred just before COVID-19 and when I tried to make another appointment to talk to my doctor about mental health resources and to ask about changing my medications, I was denied access. I was told at that time that I could not access my doctor because I didn’t have a completed blood sugar test. I informed the clinic that I am immunocompromised and did not feel safe going to the blood clinic (a space that is the size of an average livingroom and would not allow 2 meters of distancing). I raised this concern and was told “We can’t help you unless you get blood sugar tests” and told me that I should not worry about COVID. I reitterated that I am immunocompromised and mentioned that blood sugar and suicidality do not correlate and mentioned that my medication for depression, anxiety, and convulsions was probably a concern. I was repeatedly denied service, so I went directly to my pharmacist who was able to give me support and advice about my medication.

I decided that I wouldn’t be able to get any help from my doctor, who made it clear that she was not engaging with the seriousness of my disability and mental health issues.

I chalked this up to a poor attitude about mental health and kept telling myself “but she is one of the few doctors in town who really works with and supports LGBTQ2IA patients.

In early April, I began to have signs of a sinus infection. When I called the doctor, I was again told that I could not get access to the doctor without a completed blood sugar test at the blood clinic. I once again told the receptionist that I am immunocompromised and do not want to risk catching and spreading COVID-19. She told me that I was a “noncompliant patient” and that I could not get access to the doctor. I explained that a sinus infection in no way relates to blood sugar and was consistently getting worse. I was told “we are a team here and you have to follow the rules and be a team player and do what we tell you if you want to talk to your doctor.” I mentioned again that I test my blood sugar at home and had hourly data since January if that was needed. She said that she would contact the doctor.

A week and a half passed and I started calling again. Each time, I was told that I was noncompliant and that noncompliant people don’t get to see the doctor. (Note: I was asking for a virtual appointment because I am immunocompromised and wasn’t able to go into the office physically, but the office provides virtual appointments).

I am sharing my experiences here because I know that I am not alone in being denied care. This is a systemic issue and ties into ideas fo medical authority and medicalized power. Our medical system tells doctors that they are all knowing and that they have more knowledge of their patients’ bodies than we do. This feeling of expertise means that many doctors feel threatened when we say “no” and then use denial of medical service as a punishment.

Finally called with information on patient rights and informed them that what they were doing was a violation of my right of access to health care and also a violation of my right to say “no” to a procedure that could endanger my health (by exposing me to COVID-19). I explained that I would not contribute to the issues around COVID-19’s spread and that I also didn’t want to overload an already taxed medical system by taking time and care away from those that need it for urgent issues related to the virus. I was told that I was noncompliant and that they wouldn’t respond until I had a completed blood sugar test. I want to reiterate that a sinus infection and blood sugar are unrelated, so this demand was not being done for my health or safety.

We need access to better supports as disabled patients. We need to be able to have support to say “no” and to get access to medical practitioners when we need them.

It is time for us to have clear and reinforceable guidelines around access to care and to prevent situations of medicalized authority and the denial of patient care.

In my case, I was able to access a pharmacist who assisted me with changing my medication so that I didn’t continue suicidal attempts, but I am also in a privileged position of being confident to contact my pharmacist and find ways of working around the denial of care. Other suicidal people and people in mental health crisis may not have the same access and may not feel able to contact other medical practitioners after being denied care relating to their suicide attempts, so I worry about the results of denial of care for other people in my situation.

An Interview with Fran Odette

An Interview with Professor Fran Odette, George Brown College

By Derek Newman-Stille

Q: To start off our interview, could you tell readers a bit about yourself?

Fran Odette: Wow, this is always a challenging question but here goes…I am a professor at George Brown College, in the Assaulted Women and Children’s Advocate Program as well as in the Social Service Worker Program. I identify as a queer, cis-gender female, settler and I have multiple disability experiences. I am a wheelchair user and am also hard of hearing, so I use hearing aids.

Q: Could you tell us a little bit about your relationship to disability?

Fran Odette: I was born with a genetic condition called Osteogenesis Imperfecta, Latin for ‘imperfect bone development’. It was hoped when I was young that surgery referred to as ‘rodding’ would allow me to be mobile and walk with braces and a walker…at the pace slower than a snail. This did not provide a good quality of life for me and so I opted for using a wheelchair for mobility and never looked back. It’s interesting that my relationship to disability started very early where my parents were told that when I was born that they should take me home because I did not have a long life expectancy – I think they told my parents maybe three months and now I am almost 58 years old. In many ways, that also affected bonding with my parents who were always worried about when the next ‘shoe’ would drop and something dramatic would happen to me. The influences of the medical model was alive as a young child as my life was always seen as somewhat precarious, in the eyes of others, whereas I saw my life very differently.

Q: How did you get involved in Disabled activism?

Fran Odette: I think much of my involvement around disability activism came from my own experiences of having to fight to be included and seen as someone who was capable as anyone else to do whatever; go to school, perform well on my job, be seen as someone who was a potential partner, a future parent, etc. When I was finishing my degree, I was dealing with an emotionally abusive partner who had followed me from one city to another. In my efforts to get out of the relationship, I met a wonderful counselor who supported me to see that in spite of my efforts to be the best that I could be, I was not going to be able to change my partner… that was up to him.

I came to realize that a lot of what I was experiencing was not only internalized sexism but also ableism. It was hard to tease out the complexities between the two, but I thought if I was struggling and was someone who was articulate, was able to advocate for myself, what about all the women with disabilities who were staying in abusive relationships because they did not have access to supports that could facilitate getting them out of the abuse and into safer spaces, such as shelters or other kinds of housing where they were not reliant on their abusive partners. It was my own experience in seeking supports, that I later became interested in wanting to learn more about other cis-gender women’s experiences who were dealing with violence in their lives. As a result, I later worked as a research assistant on the first official province-wide research for Office for the Status of Women (Ontario), looking at issues impacting women with disabilities in abusive relationships.

Q: Much of your work involves the exploration of the intersection of gender and disability with a particular focus on disabled women. What interests you about the exploration of disabled women’s lives?

Fran Odette: While I was completing my Masters, I was the only visibly disabled student in the program. Oftentimes, I would be asked by the faculty to comment on the experiences of disabled women. Perhaps it was unintentional, but I felt like I had somehow become the ‘spokesperson’ of disabled women… I began to wonder what were the experiences of other disabled women and so I took it upon myself to start reading anthologies by disabled women such as The Power of Each Breath, and began to see myself within the pages. I later ended up doing research on the DisAbled Women’s Network Canada, a grass-roots response to the failure of the mainstream women’s movement and also the disability rights movement to include disability and gender as part of their overall analysis leading to disabled women having to organize collectively to ensure that our issues were on the agenda.

Q: Some of your research explores institutional and personal abuses for Disabled people. Are you comfortable telling us a bit about what trends you have noticed?

Fran Odette: Yes, when I returned to Toronto I ended up working with the Disabled Women’s Network, Ontario where I shadowed mentors who had been the founding ‘mothers’ of DisAbled Women’s Network (DAWN), Canada. Ms. Pat Israel, was/is a mentor and wonderful colleague/friend who I feel indebted to for the incredible learning I gained from my early days as a ‘baby’ activist. While I was with DAWN, I met other non-disabled allies who felt that the conversations needed to be expanded as it was not just disabled women experiencing violence, but rather disabled people were vulnerable and at a higher risk for abuse by family, caregivers and other professionals. I later went on to work for the Ontario Provincial government where I worked on addressing the creation of policies and practices so as to ensure safeguards against abuse for persons who were institutionalized.


Q: What inspired your interest in narratives of the abuse of disabled people?


Fran Odette: I think that hearing the stories from people who have the lived experiences around violence are so important… and oftentimes it is those of us who are the most marginalized whose voices are erased or taken up in specific ways that are created by non-disabled people. Similar to when we are talking about supporting ‘victims’ or what I prefer to say are ‘survivors’ of violence, we need to remember that as providers we are not the experts. We have not lived with the abuser nor do we know the ways that survivors have ‘survived’ til now and what we need to do is ensure always that the person is in control. Similarly, I think that when reading texts about ‘how to work’ with disabled people oftentimes there is a particular ‘spin’ on the narrative, which may contribute further to seeing disabled people as ‘victims’ whose lives are already ‘tragic’ because of living with a disability. For many of us, we have had few opportunities perhaps even before getting into the abusive relationship, where we have not had control over our lives because of the dominant narratives that exist around disability, gender and violence. I feel that it is critical if we are going to make change and if folks who are committed to working in allyship with disabled people, LGBTQ+ and BIPOC communities, we need to listen and hear what people need and want because we are the experts of our experience and the role I think of service providers is to facilitate opportunities for folks to get the kind of supports that work best for them.

Q: Disabled people are frequently de-sexualized in our society, yet we are, of course, sexual beings. You have done work exploring sexuality and disability. What were some of the things that stood out to you as important?

Fran Odette: When I think about sexuality within a Western context, I would say that much of how we have come to think about sex and sexuality has been skewed by the media. The messages about what it means to be ‘sexy’ or ‘desirable’ are dominated by unrealistic expectations and images which are unattainable at the least and damaging for all of us. I think that in actuality we live in a world that is quite sex-phobic. When we think about “disability” and “sexy”, these two tend not to be in the same sentence. It’s hard to find good sex-positive information that speaks to the experiences of disability and what it means to be desired. In looking at this issue, I joined with Dr. Miriam Kaufman and Cory Silverberg to co-author a book called The Ultimate Guide to Sex and Disability. It really isn’t the ultimate guide, but it was meant to be a resource that spoke not just to disabled people. Throughout the book, the voices of disabled people were interwoven.

Q: Much of your work has focused on the importance of Disabled people’s narratives and of us speaking our own narratives instead of Abled people speaking over us. Can you tell us a bit about why sharing our stories is so important?

Fran Odette: I think that what is key is that disabled people have always been here; we have been part of community centuries before medicine, the church and government influenced the ways in which we have come to understand the concepts of disability and impairment. We also know that many of us have experienced a history that speaks to a long legacy that has not been kind to us, that has actively worked towards eliminating or excluding us from being part of community. I think that because of legislation and proactive policies and practices, we are seeing more disabled people being part of the community and there is a demand that we take our rightful place in society and that we are no longer willing to be hidden away because of our differences.

Q: You have a passion for teaching about disability. What are some of the important things that you want your students to learn about Disabled people?

Fran Odette: I love it when there are the ‘aha’ moments; when students come together and are seeing the connections between their own experiences of marginality and that of disabled people. To hear from students who have never heard our history and have wondered ‘why’ it is only in this course that I teach that this history is becoming known? Why is that? I also love it when students are able to make connections about their own experiences of disability and take up those connections in a space that felt safe to unpack their own assumptions and to start seeing disability as an ‘identity’ could be something that could be positive.

Q: Is there a way that readers can find out more about your research and social justice work?

Fran Odette: I would imagine, you might be able to do a google search with my name. Even I am amazed where I will find my name and the connections that exist.

Essential American Sign Language Signs Around COVID 19

A guest post by Trent University ASL instructor Jennifer Endicott about essential American Sign Language signs for COVID 19, social distancing, outbreak, mask, gloves, hand washing, sanitizer, high temperature, and other essential signs around this pandemic


Jennifer Endicott is an American Sign Language (ASL) instructor at Trent University. She was born in Peterborough and attended the Sir James Whitney school for the Deaf in her youth. Jennifer has worked at Sir Sandford Fleming College teaching ASL for 10 years, ran Skyhands Peterborough, and has worked with the Ontario Cultural Society of the Deaf where was the director for a year. Jennifer is a member of the Deaf community and has an incredible passion for sharing her language and teaching ASL. Jennifer has a passion for ASL

#UHateDisabledPeople

#UHateDisabledPeople

By Derek Newman-Stille

Twitter may seem like a strange place to create community with its short word counts and inclination toward simple answers rather than complex explorations, but it has become a space for disabled people to share our experiences with one another and to share experiences that we may have felt were ours alone. Disabled stories by disabled people are rare. Frequently publishers would prefer stories ABOUT disability written by abled people rather than narratives about disability by those of us in the disabled community. Yet we know there is a need for us to share our stories and to use our stories to advocate for change.

Frequently when people say that we need our stories to advocate for change, the assumption is that we are writing for an abled audience rather than a disabled one, however, one of our biggest tools for advocacy is our community. We have been able to achieve change through uniting as a disabled community and collectively engaging in activism.

Often we are expected to fight for disability justice quietly and accept what the abled majority tells us we are due, however, that hasn’t been effective in the past. We have never had rights “given” to us by a “compassionate” abled majority, we have always had to fight for our rights with committees, with demonstrations like climbing up the stairs of congress, and through legal action by disabled people. Being quiet has never served us, so we need to speak up and we need to make change loudly as a community. Disability justice comes from disabled anger.

Imani Barbarin has been a key figure involved in Disabled Twitter and has been devoted to disability justice through multiple fora including the Twitter hashtag #UHateDisabledPeople. Barbarin is a conversation starter, coining various twitter hashtags in order to begin conversations between disabled people and evoke change. As a disabled black woman, her work is intersectional, drawing on disability studies, but also a critical race perspective, and a feminist outlook. Barbarin has been a key figure in exploring disability representation, disability culture, and inclusion.

Barbarin’s hashtag #UHateDisabledPeople is in-your-face, powerful, and expresses the NEED for change. She expresses the idea that acts of ableism ARE acts of hatred toward disabled people. This hashtag has allowed people to come together in expressing our common experiences of ableism with a lot of responses by the community stating “I’ve experienced the same thing”

Some key tweets that have come up are:

Dr. Laura Dorwart points out in her Tweet “If you hear that a violent crime has been committed against a disabled person and your first thought is that the loved one who did it must have a good reason or deserve sympathy, #UHateDisabled People.

Dr. Dorwart points out that people often dismiss acts of murder against disabled people as “for the best” or “an act of love”, thus excusing the family members who murdered them. Frequently this is used as an excuse to get people out of murder charges when the victim has been a disabled person.

Gregory Mansfield points out further serious crimes against the disabled population in his tween “#UHateDisabledPeople if you believe that sterilization, insitutionalization or filicide of disabled people are explainable, acceptable or justifiable.”

Yet these tweets don’t only express radical acts of violence against disabled people, they also illustrate everyday ableisms and the way that the language of ableism is entrenched in every aspect of our society.

Charles Hughes points out that ableist society can only view us as “good cripples” when we are being “inspirational”; “If you love us when we’re adorable or ‘inspirational,’ but try to shut us down when we’re assertive or uncompromising, then #UHateDisabledPeople”. Hughes brings attention to the common trope of the “good cripple”, and the notion in ableist society that disabled people constantly need to be grateful for even the basics of accommodation or support afforded in our society.

Eli points out in their tweet issues around the unemployment of disabled people and the fact that it results from ableism and the entrenched belief that disabled people can’t work while ablist people still say that we disabled people should “get a job”. Eli states “When you think disabled people should get a job but you won’t hire us #UHateDisabledPeople” Eli illustrates the contradictory messages from our ableist society that we SHOULD work, but simultaneously that we CAN’T work.

Imani Barbarin observes the entrenched idea that disabled people don’t need to leave their houses and therefore don’t need to be accommodated by public spaces or public services when she states in her tweet “If you can’t think of a reason for disabled people to leave their house, other than to go to the hospital, UHateDisabledPeople”. This is a key issue since Barbarin and others on Twitter have been recently talking about rideshare and other services denying access to disabled people and then leaving us bad reviews because those services refused to accommodate our needs as disabled people (for example, denying access to people with service dogs, refusing the delivery of food to people with mobility disabilities).

Several people have brought attention to the assumption by the public that disabled people are “faking it”. For example, “Lilo the Autistic Queer” states in their tweet “if you harass strangers because you don’t think they should park in the accessible spot and/or sit in the accessible section on the bus/train #UHate Disabled People.” “Lilo the Autistic Queer” observes that people often act as though if they can’t immediately see our disabilities then we must be “faking it”.

Catherine Paul elaborates on this entrenched belief that disabled people are faking it, stating “If when you see a chronically ill person having a good time, you think they must be faking their illness, #UHateDisabledPeople.” The social assumption that we disabled people are “faking it” means that a huge amount of money is wasted on investigations into our claims of disability and often results in huge amounts of money that should be allocated to disability supports instead being allocated to investigations into our disabilities. So strong is this entrenched belief that disabled people are “faking it”, that people on the streets frequently believe they have a role in telling us they don’t believe we have disabilities or attempting to kick our canes out from under us or push our mobility devices. Indeed, Kaitlyn @BlytheByName points out the experience of purposely being bumped into in this tweet: “When you purposefully bump into me while I’m walking with my cane to test if I ‘really need it’ UHateDisabledPeople”.

Walela Nehanda illustrates how often disabled people are assumed to be “faking” their disability or trying to “scam” or “cheat” the system by saying “If you beleive disabled people are ‘faking’ our conditions because our disabilities don’t present in a way you’re accustomed to or because you think we are trying to ‘scam’ people or ‘cheat’ the system #UHateDisabledPeople”. Frequently abled people assume that they should be able to immediately look at us and then diagnose us with a glance and dismiss us as non-disabled when they can’t see our disabilities at a glance.

Not surprisingly, abled responses have varied from dismissing disabled people’s experiences to threats and doxxing.

“Diary of a Disabled Person” states “Okay, now I’m getting actual abuse from people over #UHateDisabledPeople, mocking my assumed lack of intelligence and inability to speak. Is it going to stop me? No fucking way. Is it going to get you reported? Damn right it will. Each and every one of you should be ashamed”. “Diary of a Disabled Person” is not the only person to receive threats, comments about their intelligence, and comments about their right to speak. This is happening across the hashtag.

“Dame DuhLaurien” dismisses the experiences of disabled people by saying “I think ‘hate’ is an awful strong word for the kinds fo things I’m seeing complained about in the #UHateDisabledPeople tweets but regardless cant we get #ULoveDisabledPeople.” In this, “Dame DuhLaurien dismisses the experiences of disabled people as minor, even though many of these tweets involve discussions of physical violence, exclusions of rights, and outright murder (as illustrated above). “Dame DuhLaurien” calls these experiences “complaining”, reinforcing the idea that disabled people shouldn’t express our frustration with everyday ableisms. “Was God In The O.R.” responds to “Dame DuhLaurien” by saying “Because y’all don’t love disabled people Lauren. Disabled people are denied access to food delivery, rideshare services, and public transportation, DAILY. And when we get on the internet to vent amongst ourselves, we’re made fun of, threatened, and doxxed. #UHateDisabledPeople”. “Was God in The O.R.” points out that people often use the words “we love disabled people” while continuing to perpetuate our oppression on a daily basis, illustrating that we, as disabled people feel the constant hate from an ableist society.

“TheDisabledEnthusiast” responds to “Dame DuhLaurien”‘s post with “If you think disabled people have to call out ableism in a way that’s more comfortable to you, #UHateDisabledPeople. You didn’t even bother to understand or sit with the meaning of the hashtag before you decided you were too uncomfortable and needed to shut it down.” “TheDisabledEnthusiast” points out the snap response that abled people have when being called out for their ableism and the instant response of tone policing disabled people rather than listening and thinking about what we are trying to express.

Imani Barbarin “Crutches&Spice” responds to all of the violence against the #UHateDisabledPeople hashtag by saying “people can troll my hashtags all they want. 1. They’re contributing to the numbers. 2. They’re proving my point. 3. The people who didn’t believe us can no longer ignore how widespread the problem is. Thank you for your time”. Barbarin powerfully points out that all the people who are denying the violence against disabled people only need to look at the violent responses to our tweets in order to see the entrenched ableism against us. Yet, she also points out the power of disabled twitter by observing that when our voices come together and we express the violence we’ve experienced – even if it is only by re-tweeting or liking a post – we are illustrating the common violence that we all experience.

Hashtags like those created by Imani Barbarin illustrate the power of our collective voice as disabled people. They are a way of creating community and collectively pouring out all of the violence and hatred we have experienced. Sharing a Twitter thread like this is confirmational for us, illustrating that we are not alone in our experiences. #UHateDisabled people is a strong hashtag because strong language NEEDS to be used. We are experiencing systemic violence and are constantly told to be quiet and accept the violence we are experiencing every day. Hashtags like this illustrate the power of collective storytelling, the power of sharing our narratives together and giving voice to everything that has happened to us. They create community as they advocate for change. As Barbarin states “The people who didn’t believe us can no longer ignore how widespread the problem is”.

Charity™ and Disabled Futurity

This year I had the opportunity to write a story for the all-disabled author anthology Nothing Without Us edited by Cait Gordon and Talia Johnson (Renaissance Press, 2019). My story was set in a future in which the Canadian government stopped providing any form of support for Disabled people and instead decided to corporatize disability and give the responsibility for Disabled people to the Charity industry.

On the Spoonie Authors’ Network, I published a short piece talking about my research on disability, my thoughts about disabled futurity, the relationship between theory and speculative fiction, and my inspiration for the story Charity (TM) that I wrote for the Disabled Futurity anthology.

Spoonie Authors Network

Editor’s note: I invited Derek Newman-Stille to share with us their own experience with writing fiction, as some people might only know them as a champion in elevating speculative fiction authors and/or disabled voices. Their short story, Charity™, is the grand finale of the Nothing Without Us anthology.

Most of my writing about disability has been either academic or experiential, critiquing the representation of disability in the real world and examining my own experiences with my disabled body and identity. I have done analyses of the representation of disability in fiction, have explored the impact of government policies on disability, looked at how DisArt (disability art) articulates disability and the disabled community. I have shared my own stories about disability—how my disability relates to abuse I experienced as a child, how my disabled and queer identities interlink, the way that bullying and violence shaped my experience as a disabled…

View original post 1,360 more words

Disability Tropes 101 – The Magical Cure

Disability Tropes 101- The Magical Cure

By Derek Newman-Stille

While the Spoonie Authors Network is on a temporary break, I wanted to briefly move my Disability 101 posts to my own site – Dis(Abled) Embodiment. If you are interested in checking out the rest of my Disability 101 posts, please go to https://spoonieauthorsnetwork.blog and read them on the Spoonie Authors’ Network. In the meantime, please enjoy my exploration of the Magical Cure Trope

Authors writing about disability frequently have difficulty with the idea that we can live life happily with a disability. This is something that is not limited to literature, and, of course, there are elements of this trope that shape people’s perceptions of disability. For example, when writing a tweet about the problem of people assuming that our lives as disabled people are shaped exclusively by tragedy, I wrote that we can be happy AND disabled. In response, several people send messages that this was impossible and telling me to “f-off” and suggesting that disabled people’s lives can only be filled with suffering and that death is therefore a blessing to us. This ideology is, of course, highly problematic, to the point where it also is cited as the motivations for so-called “angel of mercy” killers to kill disabled people, believing that we are better off dead.

Frequently, abled authors who write about disability feel that they need to either have their disabled characters die as part of their narrative, or have them become magically cured so that they become completely abled. They do this largely because they can’t imagine that one can live a happy life with a disability, so in their wrapping up of their narrative to provide a “happy ending”, they feel the need to either eliminate the disabled character and thus “end their suffering” or to suddenly find a cure for them. There is a term for the first trope that I mentioned – the “Better Dead Than Disabled” trope. However, that isn’t the focus of this particular post. Instead, I want to focus on a related trope, the “Magical Cure”. Both of these are a form of erasure of disability, but the Magical Cure trope relies on the idea that somehow someone’s disability is suddenly erased. Frequently these erasures happen because of the marvels of science, the exertion of willpower (because frequently authors decide that if we want to be abled enough, it will suddenly occur), or because of literal magic. All of these possible cures fall under the “Magical Cure” trope even though only the last one involves actual magic.

Isabel Brittain refers to this trope as the “Happy Endings?” Trope in her article “An Examination into the Portrayal of Deaf Characters and Deaf Issues in Picture Books for Children” (Disability Studies Quarterly, Vol 24, No 1, 2004). She states that in this trope “The author fails to see a happy and fulfilled life being a possibility for a character with an impairment”. She questions the notion of the happy ending by adding a question mark at the end of her title for this trope. She observes that the issue is the failure of imagination of the author to consider that one can have a fulfilled life while also being disabled, but I would also add that in addition to the failure of imagination, the author is also embedded in a culture where ableist ideas about disability are the norm and where it is assumed that disability is the personification of tragedy and “mistake”. Tanya Titchkosky characterizes this well when she states that “What is wrong is seen to belong to disabled people in a more intimate and personal way than it does to others” (Disability, Self, and Society, 2003). Disabled people are perceived as a personification of mistake and tragedy, assumed to be lesser than an able-body. As a result, disability is often conceived of as a fate worse than death and the notion of a happy life for disabled people is not possible for most abled authors to imagine. So disability is perceived as something to be “solved”, as something that is in need of fixing, and therefore abled authors frequently tie up their narratives in what they believe is a happy ending – an erasure of disability entirely.

There is a genre that is particularly wrapped up in the notion of the Magical Cure, and it is the genre that often has an interest in the topic of magic – fantasy. In her paper “Devices and Desires: Science Fiction, Fantasy and Disability in Literature for Young People” (Disability Studies Quarterly, Vol 24, No 1, 2004), Jane Stemp points out that the ease of magic in fantasy means that often disabled people’s bodies are made able with the flick of a wand and a few magical words. But she also points out that fantasy has an interest in the notion of the perfect body and that frequently in fantasy, the imperfect body is also portrayed as an imperfection of moral character. Fantasy has, as she suggests, a pattern of replicating “mythical, perfect archetypes” and as a result, has a fascination with ideas of “perfection” and its relationship to the body and ability.

Frequently the Magical Cure in fantasy is connected to the idea of the quest and the notion of suffering and triumphing over evil in order to finally be rewarded with a cure and live happily ever after. This problematically reinforces the idea that able-bodiedness is not just an ideal state for any body, but can be a reward if one works hard enough.

The trope of the cure can be particularly damaging for disability rights since it also suggests that disabilities can and should be fixed, which is particularly problematic for people whose disabilities are not aided by medical or other interventions. It also reinforces the idea that funding should be given to cures rather than to accommodations to disabled people, suggesting that our disabled bodies should be changed instead of changing the social and physical environment that provide barriers to our access. So instead of working to include us, this trope reinforces the idea that we should change our bodies in ways that are painful or impossible in order to fit into a one-body-type-fits-all ableist system and environment.

I want to highlight some fantasy works that resist this trope, particularly Alison Sinclair’s Darkborn Trilogy, in which there is a world where magic exists and where half the population is blind, but they never try to modify themselves through magic in order to see. Their blindness is part of their culture and their cultural interactions. I talk about this extensively in my article “Where Blindness Is Not (?) a Disability: Alison Sinclair’s Darkborn Trilogy” (Mosaic Vol 46, No 3, 2013), so I don’t want to replicate that here. I also want to highlight a fantasy story published this year in the all disabled anthology Nothing Without Us (Renaissance Press), titled “The Descent” By Jamieson Wolf. In this story, Wolf’s narrator, Jefferson, initially sets out to learn magic in order to “cure” his disability, even dissociating himself from his disability by naming it “Max Shadow”. Despite learning magic, Jefferson is not able to “cure” his disability and eventually seeks an oracle, once again turning to magic in order to try to remove his disability. Yet, throughout the narrative, Jefferson gains a certain intimacy with Max. Not only does he not remove his disability through magic, he gradually comes to understand Max, embracing him and shifting his perspectives on the need to be “cured”. “The Descent” deals with the internalized ableism we feel as disabled people, often assuming that the only way that we can interact with the world is through being “cured”, i.e. made able-bodied. Wolf’s use of the disability as a personified character who is interacting with the disabled person he comes from allows for an exploration of that dissociation from disability that our internalized ableism can create, but it also allows for the disability itself to be personified and humanized. Instead of othering the disability, Wolf’s technique personifies disability and brings up ethical questions around the erasure of disability.

Longing for A Deaf Community

Longing For A Deaf Community

A review of Raymond Luczak’s “Mafia Butterfly” in Nothing Without Us (Renaissance Press, 2019)

By Derek Newman-Stille

Raymond Luczak’s “Mafia Butterfly” is pure Deaf Pride. Luczak explores the powerful intersection of femininity and Deafness with a character who turns off her hearing aids so she doesn’t hear catcalls, who challenges men who try to reduce her to her body, and who recognizes that the second she speaks and they recognize she is Deaf and uses sign language, they realize that “suddenly they’re not in power”. 

Luczak points out the double violence that Deaf women experience, both because of their Deaf identity and because of their gender identity, having his character comment on the ableist, sexist comments that “Deaf people are supposed to be great in bed because they don’t know how to say no” and that because of her Deaf identity, she is perceived to be “all about the body”. He explores the frustration at a family that refuses to learn to communicate with her, pointing out that she decided to take speech therapy for her family’s benefit but they won’t take time to learn ASL. 

Luczak gives the reader insight into the joy that people in the Deaf community experience when they are able to connect and use ASL with his character saying “when I tasted the forbidden fruit of Sign, I suddenly realized that I had been sleeping all my life in a cocoon”. ASL is not just a way of communicating – it is transformative, bringing his character life. She experiences pride in her identity, describing herself as “I wasn’t just deaf; I was Deaf. Capital-D!”. Deaf identity was powerful for her, allowing her to find a history, a culture, and a language. 

Yet Luczak also explores violence between members of the Deaf community and bullying by people who assume positions of power. Luczak’s narrator experiences rejection from the community she sought and the identity she needed. 

Luczak gives the reader insights into ASL when he translates signed dialogue into English, preserving the cadence and ‘voice’ of ASL in his writing with statements like “Himself same-same m-a-f-i-a decide maybe you nothing. If happens, worry not. Himself run Deaf community not.” Luczak uses these lines to speak to an audience that knows ASL, while also bringing DeafWorld closer to the hearing world and letting hearing readers experience the need to translate for once. Simple acts like this bring notice to the audism (hearing-centric nature) of our world and the expectation of Deaf authors to translate from ASL for a presumed English reader. 

“Mafia Butterfly” is a tale about the need for a Deaf community. It’s a story about resistance not only to the violence of a sexist, audist world, but also violence within the Deaf community toward members who don’t have the same access to Deaf resources. His narrator asks “why are many Deaf people so afraid about being judged when they choose to befriend a new Deaf person? Can’t they see that it isn’t healthy to dismiss people they barely know? We need more Deaf friends” 

To discover more about Nothing Without Us, go to https://renaissance-107765.square.site/product/nothing-without-us/117?cp=true&sbp=false

To find out more about Raymond Luczak at https://www.raymondluczak.com