Category Archives: Activism

Intersectional Black Lives Matters: Placing People with Disabilities within the Anti-Black Racism Movement through a Disability Justice lens

This post was written by graduating student, Darlene Murrain.

IMG_0366
Photograph of Jalani Morgan’s photography exhibit with Darlene Murrain silhouette over it.

From the beginning of my scholastic career in Disability Studies, I always looked forward to the Major Research Thesis Project. As I navigated through the core courses of the program, I became more and more intrigued with various schools of thought around inclusion, intersectionality and activism. I knew that I wanted to carry these themes into my final project. Choosing a topic for my final project was a daunting process but thanks to my supervising professor Esther Ignagni, she helped me narrow down my topic in a way that brilliantly captured all of my interests: Placing people with disabilities in the movement against anti-black racism movement using a Disability Justice lens. The aim was to look at various local activist organizations (e.g. Black Lives Matter Toronto) whose missions seek social justice for black people and to determine how disability is addressed in their organizing efforts. With approximately 60-80% of state violence victims being black people with disabilities, I felt committed. So my research question became: “How is disability taken up within the movement? This meant to explore representation, ableist assumptions about disability embodiment, the vulnerability of differing bodies without perpetuating that vulnerability, internalized attitudes of ableism within the black community, inclusive spaces, and creating alternate ways for people with disabilities who cannot take to the streets. During the research process, I had to be intentional about not criticizing or assessing the efforts of the community organizations to determine if they were successful. I just simply wanted to see how it was done.

The research methodologies I used were Ethnography and Discourse analysis. It was impossible not to place myself in the research as I am a black woman and there were moments when I experienced a wide range of emotions, especially when reading newspaper articles about state violence and discrimination against black people. I used these moments to interact with the material from a personal perspective as well as a researcher’s perspective. Ethnography permitted me this opportunity since it’s a research method that respects the research’s subjectivity and does not make the assumption that the researcher is separate from the research. Discourse analysis helped to complement Ethnography through exploration of discriminatory language and social concepts, which I did by locating our cultural understanding of the word “normal”.

I used many sources to collect information. I collected data not only from scholarly articles and informational interviews but I also read blogs, followed social media accounts, visited visual art exhibitions during Black History Month and attended community speaking engagements. Looking back, I believe I was quite over zealous because the amount of information I accumulated became really overwhelming at one point. However, I recognize that I did this because I had so little in terms of scholarly research explicitly on disability inclusion in the modern movement against anti-black racism. I really had to process and organize the data in a way that made sense to my research. I accomplished this by focusing on the shared experiences of black people and people with disabilities. Three concepts that stood out to me in this area that I would like to share are Consciousness, The Weather and Internalized Racism/Ablesim. They are defined below:
Consciousness: This is idea of a social movement group and it’s members adjusting its way of organizing or its “conscious” to address the changing ways of systemic oppression. An example of this would be taking up an intersectional approach to black issues that include various identities, because not every one who identifies as black faces the oppression in the same ways.

The Weather: This is a concept shared by Canadian Poet and Documentarian Dionne Brand who has written about racism and state violence in Canada. She describes racism against black people as “the weather”. It is anti-blackness rooted in white supremacy and it is accompanied by the glance and the stare. She says just like the weather, racism is constant, casual and happens every day.

Internalized Racism/Ableism: This is when the individual feels inward hatred and inadequacy because of how society discriminates against them based on their identity. Also media representations can have a negative effect on the individual’s perception of self and contribute to their feelings of internal discrimination.

So back to my burning research question: Is disability taken up in the movement against anti-black racism? Absolutely! How is disability taken up? For the sake of this post, I will not go into extensive detail but from the articles I read, the organizations that I interviewed and the events and art exhibits I attended, serious considerations are made for black people with disabilities, whether visible or invisible, to participate fully in the movement. This can be anywhere from the frontlines to leadership roles to social media engagement to adding disability-related issues to the agenda. My analysis revealed that in order for the movement to be successful on a political front, the organizers had to consider the intersectionality of the multiple identities that claim blackness within the movement itself. Space is the top consideration when inviting people with disabilities into the movement, making sure it is accessible, inclusive and safe.

Black Lives Matter Toronto advocating for queer-disability rights is an example of the intersectional shift of consciousness to bring to the forefront the issues that affect everyone, not just people of colour. At the 2016 Pride parade, BLM-TO halted the parade to present a list of 9 demands to the head of the parade. Although the backlash from the media focused heavily on BLM-TO requesting the removal of police floats, what they failed to acknowledge were that 2 of the demands were requesting improved accessibility for queer people with disabilities and hearing impairments, which is awesome!

To conclude, I believe that the modern movement against anti-black racism has done a great job of being a intersectional model of inclusive and safe spaces as well as a platform for black people with disabilities.

I want to end with a quote from Feminist and Civil Right Activist Audre Lorde that says:
It is learning how to stand alone, unpopular and sometimes reviled, and how to make common cause with those other identified as outside the structures, in order to define and seek a world in which we can all flourish. It is learning how to take our differences and make the strengths. For the master’s tools will never dismantle the master’s house.

Walking with Strangers: Exploring madness through mapping and ethnography

This post was written by recent graduate, Carolyn Lee-Jones.

photograph of footprints in snow

I always find the hardest part of any task is the beginning.  Taking that awkward first step or action needed to propel me forward always brings with it a terrifying sense of anxiety.  Today, I am here to talk about presenting my DST 99 project, Walking with Strangers: Mapping experiences of madness and space, to diverse audiences.  But at the moment all I see is a sea of unfamiliar faces, strangers really.  I close my eyes, take a deep breath and start walking…

Walking with Strangers emerged to make sense of a troubling situation involving someone I had been in a care relationship with experienced escalating mental health crises.  The degree of stigma, lack of accommodations and responses to her distress was appalling.  Witnessing these events led me to reflect on my own experiences of distress and struggles with a Mad identity.  Guided by a Mad Studies framework, Walking with Stranger is an ethnographic study exploring how Mad People experience and negotiate social and geographical spaces in everyday life.  Or more simply, discovering how Mad People are living in space.  My research involved working with four Mad identified participants.  Each produced 24-hour narrative diaries focussing on ‘thick description’ and participated in semi formal interviews.  Most importantly to my research, I also went on go ‘go alongs’ where I actually walked with participants as they went about their regular routines and locales to get a sense of how they interact with their environments.  

When I initially developed Walking with Strangers I didn’t give much thought about how I might have to alter my project to reach audiences from different backgrounds.  Most recently I was challenged with taking the presentation I prepared for the Canadian Disability Studies Association (CDSA 2016) conference and turning it into something I could co-present with Dr. Kathryn Church to a Media Production class at Ryerson.  Being immersed in Disability Studies, I had forgotten how foreign the concepts had been when I was first introduced to them.  Presenting to the Media Production students, mental health as illness and the more common medical, recovery based models- these were familiar to the students.  Mad as an identity and pride, never mind an entire field of study was far more difficult to grasp.  Nevertheless, I did my best to present the bare bones of my project and its relationship to Mad Studies.  By focusing on how I enacted ethnography in my project and what ethnographic research looked like on the ground level, I wanted to emphasise how ethnography is about living engagement.  It’s awkwardness as well as connection and everything else in between still counts as data.  

Based on the Q & A session which followed my presentation, the response to my project seemed mostly positive.  The students had interesting questions about Disability and Mad Studies, finding participants and challenges working with mad participants.  Some of the students shared discomfort with this kind of research which seemed only natural.  I had similar reservations at first but I found that doing ethnography included my learning to face my discomfort and accept that ethnography is not necessarily a linear approach to research.  Through ethnographic research I found that having to adjust, adjust, adjust was just all part of the process.  In doing so, ethnography showed me alternative way of knowing and seeing the world by immersing myself in my participant’s experiences of their everyday spatiality’s.  By presenting to the students I could show them that mad people can be researchers as well as participants.  Maybe, even changing some of the student’s previous notions about madness.  As a Mad researcher, I feel I was in a unique position both personally and academically to work from the inside out to explore complicated questions about everyday spatiality’s, madness and geography.  My work was about people living in space and presenting to the Media Production students gave me another opportunity to show the other, every day side of madness.  Reflecting, learning to present across diverse groups, I better understand the importance of being able to make my work accessible and share it with wider audiences to change how people think about mad people and experiences.  Thanks for walking with me!

 

Introducing Bodies in Translation: Activist Art, Technology, and Access to Life

This post was written by Associate Professor, Eliza Chandler.

photograph of Eliza Chandler standing in front of a painting of a woman with long hair

Beginning in January, Dr. Carla Rice and myself will be co-directing a seven year SSHRC-funded Partnership Grant called Bodies in Translation: Activist Art, Technology, and Access to Life. Activist art, as it is defined in this grant, is Deaf, disability, and Mad art, fat art, art made by aging/aged people, and Indigenous art produced by Ontario-based artists. This grant will animate the assertion that when non-normative artists have access to creating and exhibiting art, and when we all have access to publically engaging with it, that differently embodied and marginalized people achieve greater possibilities for living a fulfilled life and expanded recognition of having liveable futures. And in a culture in which D/deaf people, disabled people, Mad people, fat/differently-sized people, aging/aged people, and Indigenous people are recognized as living unliveable and undesirable lives, we recognize that the project of claiming vitality through activist art is nothing short of urgent.

Bodies in Translation brings together 40 university and community-based partners from across Canada and the UK. Tangled Art + Disability, the main community partner, will be the site of much of the grant’s artistic activity. We aim to help cultivate activist art and mobilize its social justice capacity through five research streams which will: 1) Create an open-access, accessible, and ever-expanding archive of activist art in Ontario; 2) Innovate new ways for technology to help create, exhibit, archive and experience art; 3) Facilitate the creation and exhibition of activist art; 4) Consider how activist art contributes to social justice by promoting new understandings of embodied differences, both through art and as artists; and 5) Develop free and accessible secondary and post-secondary curriculum around activist art which can be used within equity and social justice pedagogy.

The main research outputs of this grant will be an activist art archive co-hosted by the Canadian Journal of Disability Studies; the development of a standard and policy for making the arts accessible; activist art programming, performances, and exhibitions; symposiums, conferences, workshops, and publications about activist art; and a web-based knowledge platform wherein educators can freely access curriculum and curriculum development tools for teaching about social justice through activist art.

What this means for the Ryerson community:

As one of the two main university partners on this grant, the School of Disability Studies will be abuzz with research and artistic activity for the next seven years. The School will host many research symposiums— the first of which, the Aging/Disability Symposium will be held February 16th and 17th, 2017 and stay tuned for the second Cripping the Arts symposium happening in 2018. The School will also be the site of the grants Access the Arts Lab, a lab complete with 3D printers, iPads, video editing software, and new technology as it gets developed over the life of the grant that will help make art-making more accessible. This lab is free to use for students, artists, and community members, so feel free to pop by when the lab is set up next winter. The grant will also create a number of research assistantship positions for students, artists, and community members. If you are interested in one of these positions, please get in touch with me.

If you want to hear more about this grant or would like to get involved, please get in touch with me at any time: eliza.chandler@ryerson.ca, 416-979-5000 ext. 6200, office #523.

Looking forward to an exciting next seven years cultivating activist art at the School of Disability Studies!

Eliza

Is that any of your business?

This post was written by current student  Robin Kellner.

photo of Lindsay and Robin.
Robin Kellner winner of the Inaugural Helen Henderson Writing for Disability Activism Award with Lindsay Campbell.

Almost daily, my clients and I are stopped by curious passer-by’s who have numerous questions and who feel entitled to our personal information.

I understand that we stand out. It’s not common to see two people side by side, one telling the other about every visual and auditory stimulus in the mall, doctor’s office, or restaurant. But that is how some people who are deafblind live their lives, with someone travelling beside them providing access to everything there is to see and hear in the environment around them.

Most commonly, I am asked if my client is my parent.

A few weeks ago, my client was getting her banking done when the teller stops to ask “Are you her daughter?” When I passed the question along to my client, she snapped “No! She’s an intervenor.”

We both sighed as we left the bank, “It’s annoying. I’m not old enough to be your mother.” It’s true, not even by a long shot.

Curiosity is human nature, but I often wonder, if disability were to be removed from the situation, would people still feel inclined to ask such questions? I would never pull up a chair at a café and ask the two people sitting at the table how they know each other. By Torontonian standards, that would be socially inappropriate – not to mention that I do not give a crap how they know each other.  

It may not sound horrible to be approached with questions, but could you imagine if it happened almost every day?  Such inquiries rarely turn into thoughtful conversations promote awareness of deafblindness – they are flat out insulting.

The interview does not often end with me being asked if I am my client’s offspring. Again and again, we hear “Can she see?” or “What’s wrong with him?”

These quandaries are also always directed at me implying that the person views my client as invisible and unable to answer a question.  

I am not advocating for a society of people who never talk to one another and ask each other questions, but I encourage people to think about their questions before asking them. Speak to the person you are curious about directly, regardless of their mode of communication, language, vision, or hearing, and ask yourself: Why am I asking the question? Without the presence of visible disability, would I still feel the need to ask the question at all?

On a recent shift at the dentist, the receptionist asked if my client was my father. When I relayed the answer along to my client – who took the time to explain the role of an intervenor – the response was: “so like your daughter.”

We were speechless – but offered polite chuckles as we walked out using sighted guide. Having never been in that situation with this particular person, once we got outside, I asked him how he felt about the question. His response gave me a new perspective to the scenario – he said that he should have asked the receptionist if the dentist was her mother.

It occurred to me that such questions are not only disrespectful to the person with the embodied difference; they are also patronizing to the intervenor and diminish our roles as professionals.

The receptionist at the dental office is a skilled professional who plays an essential role in managing the office and ensuring the quality of the patients’ experience.  Intervenors are trained professionals who provide visual and auditory information to people who are deafblind, and are trained in various modes of communication, orientation and mobility, and much more. Sure, it could happen that a dentist could hire their child to work in their office, and a family member could be put in the position of intervenor if there is a need. But would you ever feel the need to ask the receptionist at a dental office how they are related to their employer? I would guess the answer to that question is likely no.

Why then, do people feel it is their right to ask me how I am related to the person beside me who is holding my arm, a white cane, or the harness of a guide dog? Is it because they are perceived to have a disability?

In reality, I could be their daughter, cousin, or I could even be their lover – but is it really any of your business?

 

Advocacy or how it started …

This post was written by student Sharon Clegg-Lintner and Micki McIntrye.

“Well, Micki. What do you think??”

“That would be all right with me I guess. If it means a couple of extra dollars a month for me to spend, that would be okay.”

And that’s how it all started; the second half of taking a stand and pursuing a closure for all the lost opportunities in life and one that makes her feel more credible and dignified as a human being. Not that she ever discussed those twenty years of pain, abuse and hardship while living in four of Ontario’s Provincial Institutions.

Micki, whose birth name is Marlene McIntyre, had to re-live all those painful memories three years ago as we spent nearly seven hours with me and her Adult Protective Service Worker completing the most intimate details of her years of mental, physical and emotional abuse. She spoke of other horrors that had occurred to people she knew and lived with, surprised at herself for even remembering some of their names.

“You didn’t speak of those things when staff were around and you couldn’t help even if you wanted to. I did a couple of times and got smacked and locked in a room for it. Some people died, Sharon, and we didn’t know where their bodies went.”

I’m sitting here with Micki right now so she can be part of this submission, because that’s how it’s always been between her and I since we met. We share. I was redneck nineteen year old who got a summer job at the Ontario Hospital for Women in Cobourg. (Later known as D’Arcy Place) That was 1972. And we’ve been friends ever since. There are too many stories to elaborate on since then, but the most important aspect of our relationship was how hers, and others, humbled me into choosing my career path. She became family and the both of us struggled through many obstacles so she could obtain her freedom. I took on Community and Social Services in the late 70’s to get her released into the community of Barrie and she has lived a life to establish herself as a citizen there, not without consequences by any means, but as someone who always had a heart of gold, of which she gave while others took. But I was always there as her “protector”, providing choices and alternatives.

She eventually met and decided to live with her partner, Bob, and that was nearly over thirty-five years ago. She is quite emphatic to this day that she won’t share Bob with me! “You’re my sister, and he can’t come to our house to stay when I come home!” Even when Micki got really ill two years ago and I learned that her one leg had gotten so badly infected, she was hospitalized, she told me she didn’t want to worry me and that she had tried her best to do things on her own. That cost her the amputation of her leg, a decision she made by herself after we had tried for four months to save it. South Lake Regional Hospital in Newmarket sure got to know the both of us during those months, after they originally wanted to discharge her back to her apartment that was consumed with bed bugs! It wasn’t long before the medical professionals discovered that we were a team not to be pushed around because of policies!! We’ve come even a longer way since then. I was able to secure a place at a retirement home the next year for both of them and took on officials in Barrie. It hasn’t been a smooth road since then making sure she was getting the correct medical attention and prevention for her other leg. We learned of the first collective Class Action Lawsuit against the Province of Ontario and I made sure her name was on the list. The law firm of Koskie Minsky in Toronto were absolutely wonderful! Micki and I had to originally travel to Toronto for depositions, affidavits, motions and intimidating consultations with Ministry people. But Micki charmed them all! Her wit, humour and sincerity won them over. Plus, she absolutely looked forward to staying in the big hotels!

photograh of woman with santa hat on
Micki enjoying her stay at a hotel.

Micki received a substantial financial gift as a result of the first lawsuit. We were able to obtain a brand new electric wheelchair for her and as of last October, she and Bob have relocated to a geared-to-rent disabled unit apartment in Barrie. They had the most wonderful Christmas last year, with a proper Christmas tree, decorations and gifts. Although there have been some serious medical concerns with the both of them this last year, they are much happier.

Our final chapter enlisted by Koskie Minsky this past year, was Micki taking on the responsibility of being named as applicant for a second class action lawsuit, again against the Province of Ontario, for any and all survivors of the smaller provincial institutions before they were closed. We spearheaded this motion because Micki wanted to ensure that EVERYONE who was still alive and had gone through horrific experiences were also entitled to a better life. The day she had to appear in court this past April, she manoeuvred her wheelchair up next to the lawyer’s benches and got to speak to the Judge and let him know how grateful she felt and other survivors in the courtroom clapped when she did so.

photo of Micki and Sharon with a horse
Micki and Sharon at Sharon’s farm.

Micki’s life long wishes were to see Alice Cooper, which we have done twice now at Casino Rama and she wants to go to Santa’s Village this summer, which we are planning. Micki comes home here to my farm more often now, and it is our hope that with continuing medical assistance, we can get her one leg stable enough to warrant a prosthesis, because that’s Micki — she never wants to give up on any possibilities in her life and don’t anyone tell her she can’t do something!

Photograph of woman using a wheelchair in a crowd
Micki at an Alice Cooper concert.

To read more about the settlement read Survivors of 12 Huronia-style institutions will split $36M class-action settlement in the Toronto Star.

What Can I Do? The Makings of an Accessible Playground!

This post was written by  student Cheryl Saccardo.

Playgrounds provide opportunities for children to play in a diverse, safe environment along with allowing them to grow to create and pretend while interacting with their peers. Playgrounds are meant to provide children an exciting, diverse environment to play. Authors; Yantz, Young, & Mckeever (2010) maintain “by providing children the opportunity to play together is an important step in redressing discrimination,  marginalization, and exclusion, inclusive play spaces help to promote and create an inclusive community” (pg.76). The purpose and goal of my community project are to create an accessible play environment that meets the needs both of the children disabilities who attend the school and everyone within the community. My paper focused my narrative, of my journeys as I worked on two projects one being changing the existing playground in making it accessible to everyone within the community. The second project is participating and working with school committees and stakeholders in designing and creating an accessible outdoor play space in the school’s courtyard. My motivation:  As an Educational Assistant I am required to supervise the students I support outside during their morning, lunch and afternoon recesses.  However during this time, I often see the students isolated playing on their devices because there is no equipment or other students to play and or socialize with. The students sit in their wheelchairs alone watching the other children play soccer on a field that is not accessible or safe for them to maneuver their wheelchairs, children building castles, holes, imagining that they are going to China or in the sandbox that has borders that allow able-bodied children in and children in wheelchairs out. I see children playing on the playscapes that has slides and or fireman poles, but no ramps for children in wheelchairs and opportunities to explore, imagine or play.

Children with disabilities are often marginalized and excluded on school playgrounds often because their abilities are unappreciated. I believe one of the effective ways to encourage such a change is to provide opportunities for them to self-advocate and be included in the decision-making process by providing the tools and resources necessary to express their wants and needs.

I held a learning circle including the children I support to provide them a means to express what they felt about the school playground. The students expressed they felt isolated, frustrated, mad, unvalued and sad. Expressed the basketball nets were too high and were afraid of getting hit in the head by a ball. They wanted to play in the sand with their peers, however because the sandbox is sunken in the ground,  has high borders, and not entirely accessible, the students with physical disabilities are unable to gain access to the sandbox.  In other instances, students were unsure of what to do when they wanted to play soccer because they felt they couldn’t ask their friends to stay with them to play. They didn’t want to prevent their peers from doing things they were able to do such as playing in the sandbox, practicing gymnastics on the grass or playing on the playscape. It also assisted in deciding what equipment the children felt was missing from the playground. The students shared that the most accessible equipment such as an elevated sand table and adjustable basketball net to accommodate their wheelchairs would be beneficial. The students expressed they felt comfortable playing with other students in the Intensive Support Program because they didn’t feel they would be judged. They didn’t want to leave other students alone without anyone to play with and because sometimes other students didn’t understand them or have the patience to wait for them to respond whether it is throwing the ball or responding to a question.  I have also found that because of differing maturity levels from that of their grade peers they do not have much in common. For instance; one student is 14 years old, and her favourite television shows are not age or maturity appropriate for younger children. The other children watch television shows that contain content that some other students do not understand or watch.  Having an opportunity to engage in a circle dialogue with the students, allowed me to hear the accounts first- the hand of the students’ experiences firsthand.  It also allowed the students to express their feelings and suggestions regarding what they want and need to be changed, so they feel more comfortable and inclusive with their peers. How those changes and express can be included in the design stage of the Courtyard Revitalization Project is vital and allowed the student an opportunity for them to feel comfortable in a situation and which other students may have felt the same way.      

A photograph of a wooden barrier preventing access to a sandbox
This image illustrates the school sandbox. The high wooden borders prevent access to children who use a wheelchair or walker.

                                                   

A photograph of children playing on a raised sandbox
The elevated sandbox is similar to the elevated sand and water table the school parent committee purchased for the school playground.

I did not include children in the photographs that illustrate barriers children with disabilities face on the playgrounds. I wanted the main focus to be on the barrier not on the child.

I was able to gain funding from the parent council and the principal to purchase an elevated sand table, as well as an adjustable basketball goal. It has been very exciting for both the students and I; the elevated sand table is in the process of being installed. The children love playing with the adjustable basketball goal. The students with the class I support are beginning to enjoy the school playground and are beginning to feel included within the of the school community.  Currently, I am still an active member of the in the school Playground Revitalization Project steering committee. The revitalization project is going well.  We have created our designs and are in the process of working with the board in finalizing our design and develop strategies on how to gain extra funding.  Although this began as my DST 99 final project, I am in the long haul!!

A student perspective

This was written by graduating student, Kelly Smith.

Photograph of Kelly Smith
Kelly Smith delivering her student perceptive at the annual student award ceremony.

Good afternoon,

First I would like to congratulate all of the award winners that are here today.  It is a true representation of the hard work and commitment that each of you.r have put into your studies and your work.  I would also like to thank the donors for their generous contributions without which we would not be able to recognize the work that students are doing.  Thank you!

I would also like to say thank you to the award committee for presenting me with the Nancy C. Sprott Disability Studies Award.  When Kathryn contacted me to let me know that I had won the award for excellence in my thesis I was truly surprised and deeply honoured.  I almost felt like it wasn’t really fair since I had such a great time working on my thesis.  Not that it wasn’t a lot of work, which it was, and it was certainly stressful at times but I really enjoyed the process as a whole.

I was also very honoured to have been asked to give the Student Response speech today.  It has meant a lot to me. Thank you again.

A little about me:

I was first accepted into the Disability Studies program here at Ryerson in 2002.  I had been scheduled to start in the fall but lost my job during the summer months and had to withdraw from the program at that time.  While my living circumstances changed, I always knew that I wanted to complete the Disability Studies program.  So, fast forward to July 2013 and I finally, after many years, got the chance to start the program!  

When I started DST 501 with Kirsty Liddiard, I came into the class feeling as if I had a pretty good foundation to start from.  My experience in the field of Disability had started at age 12 when I began working with a running coach at Variety Village.  At a young age I was exposed to an environment where I could ask questions and experienced so much diversity that it just became a natural part of life for me. I started working at summer camps with Variety Village when I was 16yrs old and at that time I was also training with a coach who was a paraplegic and the other athletes that he coached were all wheelchair racers.  I continued working recreation programs for kid with disabilities through Toronto Parks and Rec (as it was called back then) in evening and summer programs for many years.  I graduated from the DSW program at Centennial College in 1995 and up until the time that I stepped back into the classroom for DST 501, I worked many different jobs within the Disability field…from working in group homes and supportive living environments, teaching life skills at Bloorview MacMillan Centre (again dating myself), providing behaviour management training to people with acquired brain injuries, managing an Employment program for people with disabilities, as  well working as a Sign Language Facilitator with the Toronto District School Board.  With my background and experience I wondered just what new things this program would or could teach me.

Well, it taught me a lot and there’s still so much for me to learn.  I remember having my world shattered to some extent in that first class, having things that I had learned and believed in thrown on its ear.  One example is the use of “people first” language.  For as long as I can remember it was something that I had always done and taught others to do as well, so to learn in that first class that it was not always supported….well, it really shook things up and made me second guess all that I thought that I knew.

I was one of those people who took a long time to really assimilate what I was learning in my classes.  Logically I knew the answers to the questions and how to respond to my instructors but it took me a long time to be able to really understand, internalize and to formulate my own thoughts and understandings that were in line with the program, so if you’re a new student or even have been in the program for sometime and haven’t reached that point yet, don’t worry, keep working and critically questioning the information that you learn and it will come.

As a recent graduate I have some advice to offer to new students.

The first is that it is really important to keep yourself organized and disciplined with the classes…and I say this as someone who was at times taking 3 courses and working full time.  I don’t really recommend that though!   Treat your online courses like a job.  Schedule the days that you will complete your readings, go online and post your responses and complete assignments into your week.  It’s much easier to develop a schedule that can be flexible, rather than leaving everything to the last minute or not having a plan at all.  I actually used to take the TTC to work instead of driving to give myself 45min in the morning and 45mins in the evening each day to complete my reading….and I might have fallen asleep at times but….I did try!

Secondly, I highly recommend taking some courses from other departments when possible for your electives.  There are a few reasons that I say this.  One reason is that people are made up of many different parts, and for those of you who have gotten this far, it’s what we refer to as intersectionality.  People are never just read by one part of themselves, such as their age, culture, sex, economic status or disability but instead are read at different times by their different intersections together.  Taking courses from other departments help us to learn about different aspects of people.  For example, I took Sociology of Food and Eating and in it I learned how a person’s socioeconomic status can affect their access to foods not only through cost but also through the area that they live in which might be a food desert and food swamp. This is something that I had never thought of before and would certainly impact many of the people that I work with.  I found that there was some unexpected cross-over in what would seem like unlikely places as well.  For example, in Geography of Recreation and Leisure I saw how the “rupture” had taken place and influenced research in Geography just after I had learned about how it had affected the field of Disability studies in DST 88.

Some classes can also offer insight into how society works.  For example, in Pop Culture I learned about the power that the media plays in social construct and used ideas from this class as well as Eliza’s class as a jumping off point for my thesis.  

Another reason is that in taking these courses we become, as Paulo Freire suggests, co-creators in our education.  We have the chance to share the information that we learn in our core courses with other student’ and instructors from different departments.  As we learn from them, they are learning from us at the same time but it also gives us the opportunity to learn how to share our learnings with others who don’t have a Disability Studies background.  I found that after taking a few classes, and many of you may have experienced the same things, that I would want to come home and share this new way of thinking that I was learning with my friends, family or co-workers, only to be surprised that they didn’t agree, didn’t understand or at times even become defensive about what I was saying. I had some good conversations about this with my mum while working on my thesis and I found that it this because in our program we use specific word and phrasing and are taught to critically think about things in different ways than we did when we first came into the program.  So while we can hold conversations with those who have taken or who teach the classes, we sometimes struggle with how to put our new perspectives into different words.  I think that taking a range of classes from various departments can help us to learn how to have these conversations and say the same the things that we need to but to do it in ways that invite conversation and understanding.  This is an important skill to have when going back to our communities and workplaces with new ideas and philosophies that we learn over the course of our program.   

Finally, I would just like to say that the instructors and other staff in our program are truly amazing.  They come from diverse backgrounds and are great resources and a wealth of information and are willing to help whenever they can.  We are truly lucky to have them in our department!  On behalf of the graduating class, I would like to thank them for the help, support and commitment to us throughout our time in the program.  Without you, we would not be able to reach the heights that we have.

To end, I would like to say to all students: throughout the rest of your time in the program I urge you to ask questions, critically examine with passion, create your vision and take action!

 

On my mother’s couch

This post was written by graduating student Kelly Smith.

The idea for my DST99 project came from my mum.  On days that I would have dinner with my mum we would chat about our day and watch some T.V. Over time I started noticing some of the shows that she was watching.  Little People, Big World, The Little Couple, My 600lb Life to name a few, and I want to be clear that these are not the only shows that my mum watches but these were the shows that would engage my attention critically whenever I saw them.

  Around this time, I took several classes that also made me look critically at these shows and I started feeling like TLC (the channel) had their very own Modern Day Freak Show.   

I know many people watch these shows which makes me wonder 2 things: why people watch this shows and what it is that they get out of it?  As the scope of this question was far too large I decided to use the question “How do these shows clarify disability”?

To start I chose to focus on 3 shows mainly:  Little People, Big World, The Little Couple, and My 600lb life.  I used the term “little people” as this is the term that the people on the shows that I watched used to refer to themselves and their families.  I am used the term “fat” when speaking about the people on the show My 600 lb Life and Skin Tight because that is the term used in the Fat Acceptance Movement.

 Some of the most interesting parts of my research came from the informal conversations that I had with my mum.  When I first explained what my project was going to be about, I remember my mum saying, “you know, until you mentioned it I never thought about the people as having a disability before.”  That surprised me as I had thought that would be the point for people to watch to see.

What  I discovered through this exchange was, that although shows like Little People, Big World do show the people on the shows in very normative ways, in doing so there is a danger that people will no longer see the systemic issues which people with disabilities do face, and while we definitely want to see people with disabilities in roles that they aren’t typically seen in on television, when we only show representations which are hegemonic and perpetuate neo-liberalist ideology, that says that anyone can rise from nothing to achieve great wealth through hard work and determination. 

Instead we should be showing different lived experiences to dismantle this idea of “normal” and create a place where difference is valued and where people are shown with all of their intersections.  

 Another interesting conversation we had was around the show Skin Tight.  One week my mum told me that there was a new show called Skin Tight that was about people who had lost large amounts of weight and as a result wanted to have surgery to remove the excess skin.  I asked why she didn’t like watching that show and she told me that it was because when she watched it she felt like she was watching something that she shouldn’t be.  We had further conversations like this and didn’t come up with a definitive answer but thought it was interesting that when someone weighed 600lbs they almost become objectified and un-human as we see them naked and by somehow losing the weight their humanity is returned to them so we aren’t comfortable seeing them in their “less than perfect” state.  

I also found that the framing of these two types of shows were vastly different.  On the one hand, the shows about little people were very positive, disability was mainly only shown incidentally.  The same family was followed each week so viewers get to learn a little more about the individuals.

In my 600 lb life, however, embodied difference was the only topic of each show, there was a new person featured each week, and the entire show was very medically focused.  Each week the show started with a new person shown naked with their private areas only covered with folds of their skin….for some reason that I cannot really understand except to allow the viewer to see all of their fatness.

The framing theory would say that media frames people who are fat in such a way because they are seen as being culpable for their stigma (Backstrom, 2012). Because it is acquired, fatness is seen as being within the control of an individual.  Programs such as this one perpetuates and legitimizes already held beliefs to reinforce social reality for many people.

 One last insight that I would like to share is around the Para-social Contact Theory.   This hypothesis relates to the idea that through repeated ‘interaction’, people may feel that they come to know the individuals on the shows that they watch, much in the same way that we may feel that we know the ‘Kardashians’ or the President of the United States although we have never personally met them.  Schiappa et al (2005) believes that this contact can lead to reducing prejudice, especially if the audience have not had much interaction with the minority group members 

 I was surprised that in the end I do feel that there is some value to these types of reality shows but that we must be cautious.  I feel that we must be cognisant and show a range of stories so that people can join their voices together and be heard because disability does not occur in isolation and instead is always read with all of its intersections such as race, age, gender and sexual orientation.

Representations should be different.  They do not need to be normalized, but they do need be authentic in their telling and it should be those who own the stories that tell them in the way that they want them to be told. 

Clearing a Path: A Psychiatric Survivor Anti-Violence Framework

This post was written by instructor Danielle Landry.

Photograph of the backs of a seated audience members listening to a woman speak in the background
Jane Doe speaks at the PDAC Report Launch, December 10 2015.

Launching the Final Report

This past December, the Psychiatric Survivor Anti-Violence Coalition (PDAC) hosted a community event in Parkdale to release its final report. The project leads, Peggy-Gail DeHal Guraj from Parkdale Community Legal Services, Lucy Costa from the Empowerment Council and Andrea Daley from York University’s School of Social Work, were on hand to introduce the event. Together they spoke about the significance of the work undertaken by this coalition, how the group first came together following a series of assaults against residents of a Parkdale boarding home in 2011, and the subsequent community response, which aimed to ensure that incidents like these never happened again. 

“Why is the media only interested when we’re dead?”

– Lucy Costa, December 10 2015 PDAC Report Launch

Author of the book The Story of Jane Doe: A Book About Rape (2004), activist, educator and litigant Jane Doe (Jane Doe vs. Toronto Police), gave a compelling talk to a room of about 50 keen listeners. She spoke openly about how at the trial to convict her rapist, the cross-examiner sought to discredit her testimony by asking about her mental health history and her interest in reading ‘feminist literature’. The audience was aghast, but not entirely surprised by the experience she recounted.

Creatively designed by Lisa Walter, PDAC’s final report is written in easy to understand non-academic language. At the launch event she spoke about how the anti-violence framework inspired her design. A timeline diagram runs along the bottom of the page, giving readers a sense of significant events that have occurred during the time this coalition has been active. The report’s text uses the metaphor of ‘clearing a path’ to illustrate how we can build on both what psychiatric survivors already collectively know about the violence that permeates their lives and the anti-violence work that has been undertaken to date. Instead of learning about structural violence anew, the coalition sought to ‘clear a path’, to make visible a road that already exists and challenge familiar roadblocks, such as “lack of committed funding, organizational policy constraints and apathy” (p.29). As stated in the report, “psychiatric survivors’ pressing needs — and indeed, their right — to safety and wellness demand that we use novel approaches to break them down.” (p.29)

“Redignified lives. Now that’s a revolution”

– Lisa Walter, December 10 2015 PDAC Report Launch

Working with the Coalition

The organizing members of PDAC share a desire and commitment to address the discrimination, exclusion and violence experienced by people with psychiatric disabilities. In 2011, the originating members reached out to other people with a vested interest in this issue, including community members, professionals, academics and members of government, asking them to bring their knowledge, experience, and resources to the table.

In 2012, I joined the coalition as a volunteer representative of the School of Disability Studies and as someone who is mad-identified. At the time I was working as a Research Assistant to Dr. Kathryn Church and looking to complete a capstone project for the certificate in Advancing the AODA through the Chang School (now known as Accessibility Practices: AODA and Beyond). I was able to put my research for my capstone to use by building a literature review on psychiatric disability and violence. I quickly discovered, as you might imagine, that a lot more has been written about the trope of mad people as violent than work investigating the many forms of violence experienced by mad people. Looking at the literature on structural violence experienced by people with psychiatric disabilities, I noted that there are many conceptual frameworks for understanding violence and disability, such as: human rights, hate crimes, social determinants of health, and more… but the literature on violence written from a psychiatric survivor perspective was harder to find. Unfortunately, community knowledge of this sort frequently goes unpublished or only appears in the ‘grey literature’, which can be harder to track down.

Many of you connected to the School of Disability Studies have likely heard me talk about the work of the coalition at some point over the past few years; I’ve spoken about it to numerous DST 501 classes, presented at CDSA on the findings of my capstone project, and participated in panel at Mad Pride with A History of Madness instructor Jenna Reid. Now years later, I’m excited to share what this coalition has produced.

 

Report cover. Photo of shadow figure on rocky path. Text underneath: CLEARING A PATH: A PSYCHIATRIC SURVIVOR ANTI-VIOLENCE FRAMEWORK
Cover image of PDAC’s final report

Using the Anti-Violence Framework

PDAC’s final report documents the coalition’s work over the last 4 years to address the structural violence experienced by people with psychiatric disabilities. Here violence is defined as:

actions, words, attitudes, structures, or systems that cause physical or psychological harm to a vulnerable individual, or that cause such an individual to be placed in harm’s way (adapted from Fisher, Abdi, Ludin, Smith, Williams, & Williams, 2000). ‘Structural violence’ describes social structures — economic, political, legal, religious, and cultural — that put vulnerable individuals and populations in harm’s way (adapted from Gilligan, J., 1997 and Farmer, P.E., 2004 as cited in Farmer, Nizeye, Stulac, & Keshavjee, 2006). Violence against people with psychiatric disabilities occurs both through intended and unintended acts of violence and omission (Ontario Human Rights Commission [OHRC], 2012).” (Psychiatric Disabilities Anti-Violence Coalition, 2015, p.9)

The report outlines our psychiatric survivor-led research process, the findings from our community consultations in 2014/2015, and the anti-violence framework which sets guidelines to examine, analyze and respond to violence in the community.

The anti-violence framework PDAC has developed can be taken up and applied by different organizations in their own settings. Instead of producing another set of recommendations that could be overlooked or collect dust on a shelf, we’ve developed a framework that’s more of a “how to” than a “what to do”, so service providers and other stakeholder groups have a method to conduct their own psychiatric survivor analysis. I encourage each of you to read the report and consider how it could be taken up in the groups and organizations you belong to.

A copy of the final report “Clearing a Path: A Psychiatric Survivor Anti-Violence Framework” is available for download here: https://torontoantiviolencecoalition.wordpress.com/