Category Archives: Activism

Re-thinking Student Distress on University Campuses

This post was written by Tobin LeBlanc Haley, ELA postdoctoral fellow, Ryerson University in response to an article in University Affairs titled: Our role is to support students when they are ready to be students.

I would like to thank Dr. Costopoulos for raising the important topic of student distress and attendant university responses in his August article for University Affairs. Regrettably, the piece does not factor in the social conditions that contribute to or create student distress, such as student debt, gendered violence, racism, ableism/saneism, and homo/transphobia on campus and the hostile post-crisis political climate and labour market.

Instead, the piece collapses distress and mental illness. To put this another way, in the original article all distress is equated with mental illness and any person with a mental illness label is perceived as distressed. In this context the ‘problem’ is mind/body of the student in distress, in particular, those who Costopoulos identifies as the “severely mentally ill and sometimes actively suicidal” who take up a “very significant portion of [university] resources” (a claim which is not cited). The ‘solution’, the fix, is to have these students take time off and access mental health care systems until/if they can “function as students” (something which is not defined) and be less of a burden on the university.

In addition to ignoring the social nature of distress, the significant problems with mental health care systems in Canada are also sidelined. Yet, these are problems that have been well documented. A very few examples include long-wait times (Canadian Institute for Health Information 2012), services that do not make space for Indigenous knowledges and expertise related to mental health (Clark et al 2017) and involuntary treatment practices which have been identified as a violation of the UN Convention on the Rights of Persons with Disabilities to which Canada is a signatory (Minkowitz 2014). Is medicalizing distress and simply passing students off to mental health care systems (although certainly, they should be able to access public mental health services if they desire) while de-enrolling them from the university a solution?

The collapsing of distress and psychiatric diagnosis, the silence on broader systemic issues that can lead to or exacerbate student distress and the misrepresentation of mental health care systems belies an unawareness of Disability Studies or an unwillingness to engage with this scholarship. For more than forty years, Disability Studies scholars and activists, many of us who have been students in distress and/or students with psychiatric diagnoses, have argued against the individual/medical approach (see for e.g. Oliver 1983), most recently its mobilization under neoliberalism (Morrow and Halinka Malcoe 2017), developing instead a rich body of work about the social production of disability and mental illness (see Meekosha & Shuttleworth 2009, LeFrancois et al 2013). Briefly, in challenging the individual/medical model, Disability Scholars caution against a myopic focus on the individual body drawing attention to the social relations that define and often limit bodies. The focus on bodies obfuscates external factors (e.g., oppression) while simultaneously explaining the implications (e.g., distress) through the mobilization of solely pathological explanations. Certainly, we, as scholars, can understand that distress is not produced in a vacuum but rather emerges from the location of bodies in the current conjuncture discussed above and the devaluing of bodily/mind difference. The very notion of “functioning as a student” must be understood within this broader context, especially as university educators rank people thereby opening up or foreclosing future opportunities. How can we not take into account the world in which we are situated and the challenges it brings for our students when mobilizing this power?

Which brings me to the issue of accommodation. Typically, universities provide accommodation for those barriers to education that can be quantified (e.g., more time on exams to create an equitable testing experience). Should we not also be thinking about how issues like poverty, unaffordable childcare, systemic racism and colonialism, gendered violence and pathologized difference create material inequalities that can make living in the world more “distressing” for some people than others (whether they have a psychiatric diagnosis or not)? Simply telling students who experience distress to leave until they get better (even if financial and academic penalties are eliminated) means we are asking students in distress to individually cope with unequal social relations of power, the very social relations of power which are present on university campuses. Moreover, such an exclusionary practice is discriminatory and would likely be a violation of students’ Human Rights.

We must not treat students in distress as if they have nothing to contribute and/or as people who must be protected from their ‘poor decisions’ (e.g. remaining enrolled). Instead, we must ask them what they want and need and cultivate this support to ensure that they are not unfairly excluded from universities (permanently or temporarily). The following recommendations are potential first steps:

1. That the language used to describe students in distress recognizes that distress is related to oppression within and outside of the university including poverty, ableism/saneism, racism, homo/transphobia, and patriarchy.

2. That it be recognized that student distress will always exist so long as oppression persists, and all efforts to deal with distress must be connected to decolonizing, anti-racist, anti-sexist, anti-poverty, pro-LGBTQ work on campus.

3. That in lieu of “the mentally ill”, language about mental health be fully representative of the diverse identities of people living with mental illness labels; for example, consumers/survivors/ex-patients/Mad people (or c/s/x/m) or some agreed upon alternative developed by impacted students. This grouping of terms, which comes from a robust social movement, represents the multiplicity of understandings of mental illness categories developed by the c/s/x/m communities.

4. That students experiencing or who have experienced in distress, especially including c/s/x/m students, BIPOC students, and LGBTQ students, lead all consultations and changes related to mental health and associated support services on campus (including accommodation) and be paid for this labour.

5. That all administrators, faculty members and services providers involved in mental health care and associated services on universities campus take a course on the history of mental health care in Canada.

6. That this course be offered by scholars and/or community members who belong to the c/s/x/m community, especially including BIPOC and LGBTQ peoples, and that all involved be paid for this labour.

This is not an exhaustive list, but a starting point to shift the recent attention to mental health and distress on campuses away from a conversation about pathologization and exclusion.

Works cited

Canadian Institute for Health Information. (2012). Chapter 4: Waits for Specialized Care. Health Care in Canada 2012: A Focus on Wait Times. Available at: https://www.cihi.ca/sites/default/files/document/hcic2012_ch4_en.pdf

Clark, N., Walton, P., Drolet, J., Tribute, T., Jules, G., Main, T., & Arnouse, M. (2017). Melq’ilwiye: Coming Together: Intersections of Identity, Sovereignty and Mental Health for Urban Indigenous Youth. In M. Morrow & L. Halinka Malcoe (Eds.) Critical Inquiries For Social Justice in Mental Health (pp. 165-193). Toronto, ON: University of Toronto Press.

LeFrancois, B., Menzies, R., & Reaume, G. (eds). (2013). Mad Matters: A Critical Reader in Canadian Mad Studies. Toronto, ON: Canadian Scholars Inc.

Meekosha, H., and R. Shuttleworth. 2009. What’s So ‘critical’ about Critical Disability Studies? Australian Journal of Human Rights 15 (1), 47–75.

Minkowitz, T. (2013). Convention on the Rights of Persons with Disabilities and Liberation from Psychiatric Oppression. In B. Burstow, B. LeFrançois and S. Diamond (Eds.) Psychiatry Disrupted (pp. 129-144). London: McGill-Queens University Press.

Morrow, M. & Halinka Malcoe, L. (eds.). (2017). Critical Inquiries For Social Justice in Mental Health. Toronto, ON: University of Toronto Press.

Oliver, M. (1983). Social Work with Disabled People. Basingstoke: Macmillan.

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Introducing the Student Alumni Advisory Committee

This post is an introduction to the members of the School of Disability Studies Student Alumni Advisory Committee. You can find the latest meeting minutes on this site. To learn more about the committee contact Kim Collins at kimberlee.collins@ryerson.ca

Committee Chair: 

Kim Collins is the student engagement facilitator for the School of Disability Studies. She is an alumna of the program class of 2015.

Committee Vice Chair:

Greetings! My name is Carolyn Lee-Jones and I am a 2016 graduate of the Disability Studies program at Ryerson University. I first joined the Disability Studies Student Advisory and Alumni Committee (SAAC) while I was still a student in the program. After completing the DST course Strategies for Community Building I was looking for a way to increase my involvement and activism at Ryerson and becoming part of the SAAC was just the ticket. I am thrilled continue on with the SAAC, now as an alumni member.

Influenced by over a decade working front line in the disability sector my research interests include social justice, accessible learning and equity through social policy, Mad studies and the geographies of space and movement. When I am not engaged in research or working I keep a healthy balance in my life by pursuing my other passion; training for and running ½ marathons.

Members at Large:

Driven by passion to promote access to education for all, Marsha Ryan entered the program to explore how Disability Studies can enhance her knowledge and skills. On her academic path, Marsha immersed into a vast pool of theoretic and practical tools to further advocate for access. This resulted in her thesis project, in which Marsha described her journey of following (virtually and live) a charismatic Canadian disability rights advocate David Lepofsky, as she believes David will be one of the first to bring the Canadians with Disabilities Act. After her graduation, Marsha continues implementing educational strategies that would meet the needs of so many. She is proud to be a Disability Studies alumna and part of the SAC, as this is a way to bring change.

My name is Laura Mele.  I am in my second year of Disability Studies and a member at large. I join the SAAC last January to become more involved in the school. I grew up in a small town called Point Edward in southwest Ontario. I have been involved with individuals with various disabilities for the past 23 years. If you want to gain experience you should considering joining the committee.

Ms. Pauline Wangari Mwangi is a passionate community leader. As a
Developmental Service worker with over 10 years experience, she stands
for more than simple approach to leadership, her goal is to  inspire
unconventional thinking and transparency that delivers unparalleled
results  in the area of developmental services, community housing,
women’s rights & mental health. Ms. Mwangi currently sits at Human Rights Committee Review board and Student Alumni Advisory Committee (SAAC).

Hi. My name is Hazel Williams and I am currently taking my second course in the Disabilities Studies degree program. I am really excited to be in this program and looking forward to expanding knowledge and continuing my work as an advocate.

Trevor Smith is a member at large who is in his second year of Disability Studies.

 

 

Ordinary Extraordinary Activism

In 2017 students and staff at The School of Disability Studies launched five web-docs aiming to bring current disability activism into online classrooms. This project was a collaboration between Student Advisory Committee members Marsha Ryan, Nicole Meehan, Emily Delbecchi, Pauline Mwangi, Carolyn Lee-Jones, and Laura Mele. Chelsea Jones, Kim Collins and Melanie Panitch were the primary investigators on this project.

Developed with a grant from Ryerson’s Learning and Teaching Enhancement Fund, these web-docs responded to requests from part-time online students to form “real world” connections with Toronto-based disability activists. This multidisciplinary project asked contemporary disability activists to think through the ways in which they challenge the status quo in their day-to-day work. Activists spoke to themes of: online queer movements, mad activism, accessible city building, crip arts, and institutional survival.

Some of the web-docs highlight more than one disciplinary theme. For example, activist Melanie Marsden discusses the politics of parenting and allyship in this 6-minute film:

Many students enrolled in this part-time program are Southern Ontario-based professionals who take classes across faculties. They are online learners with particular understandings of disability espoused by their workplaces, such as school and health care systems. They are often required to respond to disability in ways that are in opposition to disability-related activism and its intersections, including, for example, mad and queer activists whose social justice work resists and disrupts school and health care systems. In her discussion about siloed services and sexuality, Fran Odette describes the significance of interdependent and independent decision making within these and other systems:

As learners, Ryerson students are called to orient themselves to broader understandings of disability in order to effectively engage in community. Therefore, our objectives in producing these films were to:

Produce fully accessible teaching tools for online instructors
Build connections with disability communities beyond our work and school
Learn from real world disability activism/s that connect theory and practice
Highlight Toronto-based social justice movements
Develop a digital archive of disability activism

Wide-reaching in scope, these accessible web docs bring Toronto’s disability leaders into online classrooms, thus empowering students to forge knowledgeable connections with the wider disability community that may be difficult to access from their professionalized vantage points. For example, Disability Pride March co-creator Kevin Jackson discusses his work organizing the annual event in Toronto:

This project started in January 2016 and was completed in June 2017. Our commitment to accessibility was that involved consideration of the ableist barriers over which all of the contributors behind these web docs have little control. The need for flexibility in any disability-based project stems from features of its diversity: a dependency on attendants, extra time needed for accessible transportation, equipment malfunctions, an ableist encounter with a stranger that interrupts filming and shifting understanding of consent (Kafer, 2013). Eliza Chandler offers some examples of the ways in which it is important to think broadly about access in creating cultural spaces and representation of disability in this film:

Importantly, these web docs are be accessible in that they apply to the AODA’s Integrated Accessibility Standard Regulation. The web docs are transcribed, captioned, and presented with ASL interpretation. However, through the production of these films we learned that accessibility is fluid; our understanding of access changed throughout the production process. We learned to think through crip time, the politics of storytelling, ethics, and collaboration:

Crip time: Working in crip time means understanding that accessibility is a broad concept; accessibility means meeting AODA barriers and simultaneously understanding that people face ableist barriers as they tell their stories
The politics of storytelling: often stories are not told in linear ways, but rather in fragments as Barry’s film demonstrates.
Ethics: Consent is an ongoing process that can change and impact production.
Collaboration: Negotiating creative differences and the importance of being entrusted with others’ stories is a key part of the creative process.

Each of these features–crip time, the politics of storytelling, ethics, and collaboration–emerged in our work with Barry Smith, whose story emerged gradually through one interview Here, Barry tells his stories of living both in and outside of Huronia Regional Centre.

In total, the project lasted spanned 19 months and cost approximately $13,000 in total. Our costs were divided as follows:

Pre-production (research such as interviews and participant honorariums): $1400
Production (filming): $4,500
Post-production (editing, captions, audio descriptions and ASL interpretation): $7,000
Cost of dissemination (conferences, posters, and screenings): $100

 

 

 

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!!