Anorexia and chronic illness: reconciling multiple identities

Trigger warning: chronic illness/ableism/internalized ableism, eating disorder/anorexia, self-hatred, medication use, family issues/parental negligence, medical invalidation/self-invalidation, and isolation. If there is anything I forgot to include, please let me know.

Disclaimer: The information below should not be used to assess, measure or judge anyone else. This is simply my experience with anorexia. The details are applicable to my situation only. The same symptoms, identifiers and treatment will not be relevant or helpful for every body or experience.

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Today is part of Eating Disorder Awareness Week. I’ve challenged myself to share my story because it scares me and because it’s good for me. Even last year, I wouldn’t have felt comfortable writing about this topic. I’m not sure I fully feel comfortable now, but I’m working on accepting and embracing my experience.

I have struggled with anorexia since I was 13. My best friend never brought a lunch to school, because there wasn’t food in her home, and her health seemed more important than mine. It was easy to hide from my parents because my food was always gone at the end of the day. I got used to being hungry and started feeling guilty whenever I ate an entire meal. Restriction became my new normal.

My best friend and I went to different high schools. We lost touch and I lost my excuse to not eat. My parents started to notice my full lunch box at the end of the day and that terrified me. I never wanted to worry them. I never wanted them to know. Throwing away my food felt wasteful, but finishing it all wasn’t possible. I needed a new excuse.

When I was 14, halfway through my first year of high school, I suddenly became very sick. Most days I was asleep for 20 hours, I missed two thirds of my classes, my entire body was sore, and I was dizzy every time I stood. My parents stopped worrying about my eating and started worrying about everything else. I would regularly walk into rooms to find them crying and they both stopped sleeping entirely. I don’t remember much from then, but I remember the pain.

It was a difficult time in my life, but an easy time to hide my anorexia. When you’re sleeping all day, you can’t be expected to eat regular meals. I would go days with no or very little food. No one noticed. They only saw the new unexplained symptoms.

I was sent for medical test after medical test, causing my loved ones to worry more each time. After months without answers, I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. Having Fibro and CFS as a 14-year-old is rough, largely because no one believes you. I was called a liar, a drug addict and an attention seeker, which doesn’t make you feel supported. There also isn’t any proven treatment, at least not for my most relevant symptoms, so I was prescribed medication off label. I still take 3 times the average dose of an ADHD medication in a desperate attempt for energy. It helps, mildly, but no one warned me about the medication’s other use for adults with binge eating disorder. The side effect suppresses the user’s appetite and can even make food seem gross. This didn’t help my anorexia, but gave me a new way to hide it.

I can’t stop taking my medication if I want to continue being able to go to work, attend classes and have a social life. So where does that leave me? How do I balance my conflicting disability needs? Are my physical disabilities making my anorexia worse?

When you develop a physical disability, you notice how everyone around you changes. Now, you’re fragile. No one wants to upset you or confront you. People didn’t stop caring about me, they just didn’t know how to deal with me. I would sit in the cafeteria everyday, not eating, and after a few weeks, my friends stopped asking. My parents never bothered me about my full lunch boxes or my unfinished plates of food. My medication gave me an out. My disability made me different enough, it made me “other”, and people felt they couldn’t talk to me. Isolation has its benefits.

I was so good at lying to other people about my eating habits that I started lying to myself. During high school, I convinced myself there wasn’t a problem. I stopped thinking about my nutrition until my first year of university when a friend called me out. It is important to remember that confronting someone about their disordered eating is delicate and should be done carefully. My friend didn’t do that. Out of nowhere, he invited me to an eating disorder support group. When I responded, shocked, and asked him why, he bluntly replied: “Because you have an eating disorder.” He had the best intentions and I’m very thankful for him. Luckily, I respond well to blatant honesty, but I didn’t that day; at the time, I quickly brushed him off and violently avoided the topic. I spent years lying to myself and I needed time to process.

I wouldn’t be writing about my experience today if it weren’t for my friends. My roommate has sat me down and forced me to acknowledge my eating disorder. He lovingly yells at me, which I need, and helps me unravel the source of my body dysmorphia and self-hatred. I have spent years working on my relationship with my physical disabilities. I have learned to find strength in my community, history and identity through my involvement in disability activism. Still, my disability does impact me. Body positivity dialogues forget that, for some of us, bodies are a constant source of pain. I still hate my body for hurting me. I might always hate my body for hurting me. Due to my internalized ableism, I often feel unworthy of love, from others and from myself. In my mind, I’m not worth the effort of making and consuming food. Other people are worth the effort, but I’m not. I might not be able to control my disability symptoms, but I can control my eating. I can subtly punish myself by refusing nutrition. For me, anorexia isn’t about losing weight, it’s about punishment. I hate myself. I hate my soft stomach and my wide ribcage, but mostly I hate myself.

I’m working on it with the help of my friends. Without them, I’d be lost. They don’t let me make excuses for skipping meals. They hold me accountable. We eat together, because the social pressure is stronger than my need to restrict. They help me notice when my body changes by pointing out when my collar bones become visible or my clothes become loose. We’ve created a makeshift support group full of radical love and wholehearted acceptance. But that isn’t always enough.

The people in my life are wonderful. They have saved me, but they haven’t fixed me. I will always struggle with anorexia. My eating disorder is part of who I am and has been since I was 13. My self-image has been distorted since long before then. I will always be in pain and I will never have the body I want. Instead of expecting full recovery and being disappointed each time I fail, I’m focusing on developing coping mechanisms and setting achievable goals. That works better for me. I’m living with an eating disorder. I’m not recovering, but I am still living. Hopefully writing this post is a good personal step.

 

Written by Kat Kahnert-Wolchak

 

For folks looking for support with disordered eating (in the Toronto area)

Sheena’s Place

Email: info@sheenasplace.org

Phone number: 416-927-8900

Address: 87 Spadina Road, Toronto, ON M5R 2T1

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Bell Let’s Talk (about corporatization)

Yesterday was Bell Let’s Talk, a campaign encouraging folks to discuss depression and anxiety. We believe in open, honest and supportive disability conversations, but is this the best way to go about it? Is Bell making change, or just using oppression to create positive publicity?

The campaign photos show the smiling faces of Olympians and actors who have come forward to share their mental health struggles. Their happy demeanor and uplifting stories suggest that you too can be successful, if only you could leave your anxiety and depression in the past. People with mental health disabilities can accomplish things too! But what about folks who can’t get out of bed, let alone win a gold medal or be a TV star?

Bell made a conscious effort to choose the most photogenic, popular and inspirational spokespeople they could. Finding inspiration in the disability community is problematic, but instead of getting into that, I’ll link you to a wonderful blog post: https://whimsyinx.wordpress.com/2017/12/19/overcoming-inspiration/

In their promotional material, appealing to the non-disabled general public is more important than accurately portraying the community they claim to support. Despite what Bell might have you believe, mental health symptoms aren’t always pretty. Sometimes you can’t shower for a week, pull out your hair, stop eating, can’t change clothes, etc. It doesn’t make for pretty posters, but it is the reality. Mental health looks different for everyone! There is no right way to be disabled.

During a breakdown or rough period, lots of folks stop showing up to work. I know I’ve disappeared when I couldn’t handle it anymore. Considering their public mental health outreach, Bell should be supportive of their employees and their need for self-care, right? Apparently not. Bell has been criticized time and time again for placing unfair expectations on their staff and punishing them for not measuring up.

Two years ago, a former employee explained how Bell creates mental health concerns by encouraging unhealthy working conditions. The story can be found here: http://www.canadalandshow.com/lets-talk-about-how-my-job-bell-gave-me-mental-health-issues-and-no-benefits/

This past year, Bell fired an employee for requesting mental health leave, despite disability accommodations being a legal human right. That story can be found here: http://www.canadalandshow.com/bell-lets-talk-mental-health-fired/

So clearly Bell doesn’t support those with anxiety or depression effectively, but what about the rest of the mental health community? The Let’s Talk conversation stops short. There is no dialogue addressing stigma in the mad or psychiatric survivor communities. Instead of focusing on a few experiences, let’s also talk about schizophrenia, dissociative identity disorder, borderline personality disorder, anti-social personality disorder, and other “dangerous” diagnoses. Let’s also talk about forced medicalization, institutionalization and sanist violence. Let’s also talk about not overcoming disability, but living with it and finding identity in it. Not everyone wants to be cured. Not all mental health disability symptoms are unwanted. We’re told not to give up hope, but what exactly are we hoping for? To be more like you? To stop experiencing intense emotions, hearing voices or seeing the world differently? To meet your ideals? To be your success story? To be less disabled?

Bell doesn’t care about you or me. Bell cares about money. The goal isn’t to raise awareness about the realities of mental health, and if that is the goal, they’re doing a terrible job. However, they’re doing an excellent job of improving their image and getting credit for doing the bare minimum. We need to expect better. We need to hold Bell accountable. Demand they include the diverse disability community in their campaigns. That means raising awareness about ALL KINDS of mental health disabilities, and making their promotional material accessible. Where are the closed captions for their advertisements or videos? Where are the image descriptions for their social media posts? (To learn more about image descriptions, check out this community-based guide: http://livingwithdisability.tumblr.com/post/124066767358/all-about-image-descriptions)

We also need to hold ourselves accountable. Corporate campaigns are not the solution. Hashtags, re-tweets and social media posts are lazy activism. Behavioural change is more work, but it’s also more impactful.

Stop using ableist language. Learn more about that here: http://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html

Support your friends socially and make more accessible plans. For tips, go here: https://thebodyisnotanapology.com/magazine/five-things-non-disabled-people-forget/

Include disabled people in your activism by making protests accessible. Learn how to do that here: http://www.rootedinrights.org/how-to-make-your-social-justice-events-accessible-to-the-disability-community-a-checklist/

Value the contribution of disabled folks. Learn more about disabled activism here: https://www.autostraddle.com/be-the-change-six-disabled-activists-on-why-the-resistance-must-be-accessible-368956/

And support community-based campaigns instead! There are activist groups at most universities, like the YFS Access Centre at York University, RyeAccess at Ryerson, and Students for Barrier-free Access at University of Toronto. For folks outside of post-secondary, look into groups in your surrounding area or online. Ask disabled folks about disabled folks. We can and do advocate for ourselves. We don’t need Bell to talk for us.

 

Written by Kat Kahnert-Wolchak.

Toronto Community Resources

Addiction Supports

Breakaway Addiction Services

Contact:

Services:

  • Supportive Housing available to those 16 and older who require stable housing and are dealing with substance abuse
  • Pieces to Pathways, a youth-centric substance abuse program for LGBTQQ2S1AA people ages 16-29 individual counselling
  • Harm-reduction outreach and practical support workers, as well as gender-specific groups geared towards women and men
  • Toronto Opiate Support Team provides counselling, training, case management and accessible support to those who currently or have previously used opiates

Accessible: 

  • Unknown

Children and Youth Supports

The Gatehouse

Contact:

  • Website: http://thegatehouse.org/
  • Address: 3101 Lake Shore Boulevard West, Toronto, ON M8V 3W8
  • Phone: 416-255-5900
  • Email: N/A

Services:

  • Full Circle Art Therapy Centre
  • Children ages 6-12 and youth ages 13-18 are given free access to information and support surrounding abuse, bullying and healthy relationships
  • Peer Support Group Facilitator Training and ASIST Suicide Intervention Training available

Accessible: Wheelchair accessible

Stella’s Place

Contact:

  • Website: stellasplace.ca
  • Address: 18 Camden St, Toronto, ON M5V 1V1
  • Phone: (416) 461 – 2345
  • Email: connect@stellasplace.ca

Services:

  • Available for those ages 16 and 29 experiencing mental health challenges
  • Community-based, Peer Support Drop-In available Monday to Thursday 1pm-5pm
  • Stella’s Studio; a safe space to create and share art
  • Back on Track Employment Program offers supports to folks transitioning between college, university and the professional world

Accessible:

  • Not currently wheelchair accessible

YMCA Sprott House

Contact:

Services:

  • LGBTQ2S youth ages 16-24 residential housing
  • Available for up to 25 people through application and interview
  • Emergency shelter (formally known as YMCA House)
  • Harm-reduction and trauma-informed residential services

Accessible:

  • Wheelchair accessible with accessible washrooms

Holistic Supports

Across Boundaries

Contact:

Services:

  • Inclusive programs geared towards racialized communities including Alternative Healing, Traditional Chinese Medicine, Art Therapy, Yoga and Creative and Musical Expression
  • Support groups including women’s and men’s, skills building, computer training, literacy skills, Psychiatric consultation and many more
  • Languages spoken include: English, Mandarin, Somali, Tamil, Urdu, Gujarati, Punjabi, Hindi, Bengali, Farsi, Pashto, Arabic, Tagalog, Sinhalese, Twi, Dari, Xhosa, Tsonga, Harare, Afrikaans, Swahili, Shona, Amharic and Caribbean Dialects

Accessible:

  • Wheelchair Accessible
  • Guide dogs welcome

Anne Johnston Health Station

Contact:

  • Website: http://www.ajhs.ca
  • Address: 2398 Yonge St, Toronto, ON M4P 2H4
  • Phone: (416) 486 – 8666
  • Email: info@ajhs.ca

Services:

  • Community-based, confidential and free services to folks with physical disabilities, including primary health care, disease prevention, health promotion and community development.
  • Meals on Wheels, Sexability, Peer Support Group and Women’s Disability Action Awareness Group in Training

Accessible:

  • Fully accessible

Anishnawbe Health Toronto

Contact:

Location 1: 225 Queen St E, Toronto, ON

    • Phone: 416-360-0486
    • Hours of Operation: Mon & Wed 9:00 – 8:00 Tues,Thurs and Friday 9:00 – 5:00

Location 2: 179 Gerrard, St E, Toronto, ON

    • Phone: 416-920-2605
    • Hours of Operation: Monday to Friday 9:00 – 5:00

Location 3: 22 Vaughan Rd, Toronto, ON

  • Phone: 416-657-0379
  • Hours of Operation: Monday to Friday 9:00 – 5:00
  • General Phone (24 hour crisis line): 416-891-8606
  • General Email: info@aht.ca

Services:

  • Primary Health Care Services through a staff of Nurse Practitioners, Chiropodists, Dentists, Registered Nurse, Physicians, Counsellor, and Physiotherapist
  • Traditional Family Services and pre and post-natal support for women and their families
  • Diabetic Prevention and Management Program
  • Programs designed to support those dealing with issues surrounding homelessness

Accessible:

  • Translation services available with 48-hours’ notice
  • All locations are wheelchair accessible with accessible bathrooms

Indigenous Supports

Anduhyaun Inc

Contact:

  • Website: http://anduhyaun.org/
  • Address: 1296 Weston Road, Toronto, ON M6M 4R3
  • Phone: 416-243-7669 ext. 226
    • For Anduhyaun shelter call: 416-920-1492
  • Email: N/A

Services:

  • Support for Indigenous woman and children in abusive situations in a safe, women-run and allied staff
  • Emergency shelter available with strength-based counselling services offered
  • Nekenaan Second Stage Housing provides a safe, full furnished temporary housing to Indigenous woman; designed to fit up to 5 people per unit

Accessible:

  • Building access and washroom is wheelchair accessible, but individual units are not at this time

Legal Aid

ARCH Disability Law Centre

Contact:

  • Website: http://www.archdisabilitylaw.ca
  • Address: 55 University Avenue, Toronto, ON M5J 2H7
  • Phone: 416-482-8255; TTY line: 416-482-1254
  • Email: archlib@lao.on.ca

Services:

  • Provides free, confidential legal advice to people with disabilities in areas including abuse, accessibility laws, attendant services, legal capacity, discrimination, human rights, education and employment
  • Legal representation to people with disabilities who also meet the Legal Aid Ontario’s financial eligibility guidelines

Accessible:

  • Interpreters available
  • Wheelchair accessible
  • Dedicated to providing accommodation for a variety of physical, mental, language ad cultural needs

Elizabeth Fry

Contact:

  • Website: http://www.efrytoronto.org
  • Address: 215 Wellesley Street East, Toronto, ON M4X 1G1
  • Phone: 416-924-3708
  • Email: info@efrytoronto.org

Services:

  • Support for women who are currently, have been or are at risk of being in conflict with the law
  • Phyllis Haslam Residential Program to help women who are on parole from federal or provincial prisons with a place to stay during the transitional period following their reintegration process
  • Talk and Listen, a volunteer lead support group covering topics including but not limited to domestic abuse support, trauma counselling, housing and emergency shelter needs
    • Phone number: 1-855-924-3708
  • B.E.S.T. Pre-employment Program; including a job training program and a Creative Writing Workshop in partnership with Toronto Writer’s Collective

Accessible: Website is accessible

John Howard Society of Ontario  

Contact:

Services:

  • Programs for folks who have been in contact or are at risk of coming in contact with the law
  • Anger management group counselling for men, as well as addiction and harm reduction counselling and assessments

Accessible:

  • Dedicated accessible washroom with all features
  • Wheelchair accessible main entrance, assistance needed with door (no button)

LGBTQQIP2SAA Supports

519

Contact:

Services:

  • Queer and trans-focused workshops involving arts and culture, community drop-in, support, and community-led
  • Housing services and one-on-one assistance for queer and trans folks between ages 16 and 29
  • Mentorships offered for newcomers to Canada as well as LGBTQ Refugee Support Groups

Accessible:

  • Wheelchair accessible at main entrance
  • Easy access to elevator – with braille
  • Dedicated accessible washroom with all features
  • Designated parking at entrance

Women Supports

Planned Parenthood 

Contact:

  • Website: http://www.ppt.on.ca
  • Address: 36 Prince Arthur Ave, Toronto, ON M5R 1A9
  • Phone: (416) 961 – 0113
  • Email: ppt@ppt.on.ca

Services:

  • Sexual health, mental health and primary health care services for people ages 13-29
  • Queer and trans positive, survivor centric, anti-oppressive support

Accessible:

  • No elevator and not fully accessible to those using wheelchairs and mobility devices
  • All persons in need of care have access to Edgewest Clinic
  • ASL interpretation, pocket amplifiers and weighted blankets are available by request

Women’s Health in Women’s Hands

Contact:

Services:

  • Supports for women of colour and immigrant women aged 16 and above
  • Queer and trans-positive, survivor-centric and anti-oppressive
  • Physicians, registered nurses, health educators and promoters, dieticians, mental health workers and community health workers on staff
  • Individual and group counselling, pre and post natal care programs, support groups and HIV-AIDS prevention

Accessible: 

  • Wheelchair accessible

 

 

 

 

New Content

Hey folks!

We are currently creating exciting new content and making changes to the website to better reflect our documents, services, and commitment to inclusive and equitable experiences for the York University and surrounding communities.

 

York University Disability Awards, Scholarships & Bursaries Available

Folks who go to York University have the option of applying for awards, scholarships, and bursaries by going to this link: Student Financial Profile . Folks also have the option to submit a paper application, available from:

  • The Physical, Sensory, and Medical Disability Services (PSMDS) office located at the Ross Building, in room N108. 
  • Learning Disability Services, office located at the Bennett Centre for Student Services, in room W128. 
  • Mental Health Disability Services, office located at the Bennett Centre for Student Services, in room N110.

This list was created to bring awareness to what is available to folks in an easy and legible format.

Please be mindful that all of the awards and bursaries on this list have been established to assist students with permanent disabilities who are experiencing financial difficulty. Folks must be Canadian citizens/permanent residents, or a protected person.

Please read the award, scholarship, or bursary requirements carefully. All awards, scholarships, and bursaries on this list can be accessed through this link: Student Financial Profile

 

Access York Award 

  • Must have a permanent disability.
  • Must be a resident of Ontario.
  • Must have a minimum of 5.0 (C+) cumulative GPA.
  • Must have the Student Financial Profile filled out.

 

Canadian Foundation of Physically Disabled Persons Bursary 

  • Must have a permenant physical disability.
  • Must be a resident of Ontario.
  • Must have the Student Financial Profile filled out.

 

Canadian Hand Emulation Research Organization Bursary 

  • Must have a permanent disability that affects the mobility of one or both hands, or that causes the loss of one or both hands.
  • Must be a resident of Ontario.
  • Must have the Student Financial Profile filled out.

 

Conrad Bursary 

  • Must have a permanent disability.
  • Must be a resident of Ontario.
  • Must demonstrate their commitment to extra-curricular activities that improve the life of students with disabilities.
  • Must fill out the community service and extra-curricular sections of the application.
  • Must include a personal statement detailing their involvement.
  • Must have the Student Financial Profile filled out.

 

Dr. Harry Botterell Bursary 

  • Must have a permanent mobility disability.
  • Must be a resident of Ontario.
  • Must be in good academic standing.
  • Must have the Student Financial Profile filled out.

 

Edith A. Horsley and J. Bruce Dugelby Bursary 

  • Must have a mental health disability.
  • Must be a resident of Ontario.
  • Must be an undergraduate student.
  • Must be registered with the Mental Health Disability Services.
  • Must have 54 credits (3rd year student) completed.
  • Must have a minimum of 5.0 (C+) cumulative GPA.
  • Preference will be given to students majoring in Jewish Studies or the Jewish Teacher Education Program.
  • Must have the Student Financial Profile filled out.

 

F.C.C.P. Disability Bursary 

  • Must have a permanent disability.
  • Must be a full-time undergraduate student (40% course load).
  • Must be enrolled in one of the following:
    • Engineering
    • Business
    • Education
    • Health
  • Must have the Student Financial Profile filled out.

 

Global Assistance Foundation of Canada Bursary 

  • Must have a permanent physical or mental health disability.
  • Must have the Student Financial Profile filled out.

 

Jaswant Singh Randhawa Memorial Dis/Ability Award 

  • Must have a permanent disability.
  • Must be a resident of Ontario.
  • Must be entering York University.
  • Must be registered with Counselling and Disability Services.
  • Must demonstrate personal empowerment, leadership, community involvement and/or advocacy for students with disabilities.
  • Must have the Student Financial Profile filled out.

 

Kenaidan Contracting Disability Award 

  • Must have a permanent physical disability.
  • Must be a resident of Ontario.
  • Preference will be given to students associated with the Gage Transition to Independent Living, part of the West Park Healthcare Centre.
  • Must be registered with Counselling and Disability Services.
  • Must have the Student Financial Profile filled out.

 

Learning Disabilities Association of Toronto District Bursary 

  • Must have a learning disability.
  • Must have the Student Financial Profile filled out.

 

Murray Davis Bursary 

  • Must have a mental health disability.
  • Must be a resident of Ontario.
  • Must have proof of disability from a doctor or counselling disability service.
  • Must have a minimum of 5.0 (C+) cumulative GPA.
  • Must be a 2nd year student or higher.
  • Must have the Student Financial Profile filled out.

 

Ron Cope Bursary 

  • Must be d/Deaf, deafened, or hard of hearing.
  • Must have the Student Financial Profile filled out.

 

2 Shirley Halevy Bursaries (Ontario)

  • Must have a permanent disability.
  • Must be registered with Counselling and Disability Services.
  • Must be an Ontario resident for the Ontario Bursary.
  • Must have the Student Financial Profile filled out.

 

The Dusk Family Bursary 

  • Must have a permanent physical disability.
  • Must be a resident of Ontario.
  • Must have a minimum of 6.0 (B) cumulative GPA.
  • Must have the Student Financial Profile filled out.

 

The Isabel Davis Memorial Award 

  • Must have a permanent disability.
  • Must be a full-time undergraduate student (40% course load).
  • Must be in good academic standing.
  • Must be registered with Counselling and Disability Services.
  • Must have the Student Financial Profile filled out.

 

The Madeleine Lerch Bursary 

  • Must have a learning disability.
  • Must be a resident of Ontario.
  • Must be a part-time mature student.
  • Must be registered with Counselling and Disability Services.
  • Must have the Student Financial Profile filled out.

 

The Roy I. Wolfe Scholarship

  • Must have a permanent disability.
  • Must be a resident of Ontario.
  • Must have a minimum of 7.5 (B+) cumulative GPA.
  • Must be registered with Counselling and Disability Services.
  • Must have the Student Financial Profile filled out.

 

The Sheldon Levey Award

  • Must have a permanent disability.
  • Awarded to undergraduate and graduate students.
  • Must be a resident of Ontario.
  • Must have the Student Financial Profile filled out.

 

University Women’s Club North York Bursary 

  • Must have a permanent disability.
  • Must identify as female.
  • Must have completed 1st year of university.
  • Must have a minimum of 6.0 (B) cumulative GPA.
  • Must have the Student Financial Profile filled out.

 

Vera Morris Bursary

  • Must have a permanent physical disability.
  • Must have the Student Financial Profile filled out.

 

 

Disability Art As Revolution

When I was first diagnosed with fibromyalgia, I was in denial. For years, I only referred to myself as sick, never as disabled; to me, disability was entirely different and far worse than my condition. Disability conjures up images of sad people in wheelchairs, and I might have been sad but I was not in a wheelchair. Now, I am less sad, even happy most of the time, and I still do not use a wheelchair, but I proudly call myself disabled. In the time since my diagnosis, I have discovered the disability community and the strength and diversity that it contains. Instead of the dominant dialogue in my life coming from doctors trying desperately to explain my symptoms, I engage more with disability activists fighting to legitimize accessible ways of living. Moving past my impairment, I have found great personal meaning in my disability. This process of self-acceptance has been greatly inspired by the artists from my community who break ableist norms. From Deaf musicians to physically disabled dancers, activists are revolutionizing their fields and creating spaces for themselves. Yet, we still see a non-disabled monopoly in artistic fields, the media is still ableist in nature and artistic spaces are not inclusive. Building from the work of community members is key, because art is essential to fully breaking down ableism.

The social model of disability is the most prominent approach in disability art. Unlike the medical model which “locates the ‘problem’ of disability within the individual and considers functional limitations or psychological losses to arise naturally from the individual deficit”, the social model “encompasses all factors that impose restrictions on people with disabilities, ranging from negative social attitudes to institutional discrimination, from inaccessible public buildings to unusable transport systems, from segregated education to exclusion in work arrangements…” (Hirandani, 2005). The social model comes from the community, much like disability art, encouraging folks to “contest existing ‘expert’ discourses on disability by actively collaborating with people with disabilities and their advocates” (Hirandani, 2005). Promoting understanding, disability art provides an outlet for expression and methods for storytelling. The issue is whether the general population is listening.

Why are disabled artists so important? Is the current method of including characters with disabilities into existing popular media not enough? For some, maybe, but activists are not satisfied. Art in the disability community originated in opposition to “images of disability, historically produced by non-disabled people, [which] have been rooted in paternalism, prejudicial stereotypes, a charitable ethos, and assumptions of the dependency of disabled people” (Hirandani, 2005). Mainstream media is by and large produced for and by non-disabled people. Even though “people with disabilities make up nearly 20% of our population, they are still significantly under-represented on television.” Furthermore, “even when characters with disabilities are featured on the small screen, they are far too often played by actors without disabilities”; “according to the ADA’s [Americans with Disabilities Act] definition more than 95% of characters with disabilities are played by able-bodied actors on television” (Rutherman Family Foundation, 2016, pg. 1). The few stories acknowledging a significant marginalized population are controlled and performed by people with no investment in authenticity and activism, leaving our stories in the hands of others.

If mainstream media refuses to include us, we are forced to create alternatives. Fortunately, without the limitations of conservative corporations, artists are free to be radical. Disability art serves as a “forum for critiquing dominant forms of cultural representation” (Hirandani, 2005), allowing folks to point out flaws and share their frustrations among sympathetic circles. Instead of pacifying the masses and editing our experiences, disability art is bold and unapologetic, focusing on “individual and collective empowerment and pride” (Hirandani, 2005), building a community to provide support we would otherwise lack. Medicalization aims to categorize and separate, but communities join together, making every member stronger and more capable of creating change. Disability art is contentious not only in its perspective on disability, but also in its general purpose. Mainstream media tears down difference, idealizing one way of looking and one way of living. Conversely, disability art “fosters pride…, creates positive self-images, and envisions a society, which not only accepts, but also celebrates diversity” (Hirandani, 2005). Coming from a place of oppression, artists do not participate in the harmful labelling they have experienced. Disability art showcases an alternative perspective greatly needed to counteract the limited scope of dominant discourse.

When people with disabilities are excluded from the arts community, they create their own spaces, even when the nature of their disability presents unique challenges. This is perhaps most apparent in the creation of Signed Music. Signed Music was developed by the Deaf community as an alternative to traditional music in the hearing world. Songs “may or may not be created with lyrics”, but always utilize “visual performance practice with structured hand and facial movements with unique traits” (Canadian Cultural Society of the Deaf, 2016, pg. 6). Signed Music is different from signed songs “originating from spoken language” (pg. 5), referring to the recent YouTube trend of hearing individuals signing along to popular hearing music. With signed songs, Deaf folks “do not feel they have the ‘right’ to express their own creation freely as an outgrowth of their original Deaf artistic exploration” (pg. 1). To combat this feeling, instead of directly translating songs from the hearing community, artists have revolutionized a medium from which they were fundamentally excluded.

Through Signed Music, Deaf artists have expanded the definition of music itself: “music is everywhere – in nature, in the movements of the planets, in mathematics, in visual arts, in architecture and in signed language poetry” (pg. 5). Refusing to accept the ableist definition of music, American Sign Language poet Ella Mae Lentz took inspiration “from watching telephone poles and telephone wires “dance by” like visual music while riding on a train” (pg. 7). Some would argue Signed Music is not music at all, comparing it more to dance or cinematography. Yet, that is how Deaf people experience music and see the world. Hearing people have a narrow view of music which does not go beyond the auditory, therefore understanding Signed Music as a concept can be confusing. The confusion makes it even more important. Signed Music forces the viewer to look beyond their preconceived notions and consider disability’s role in creation. Without deafness, this holistic approach to music would not exist. Building on the power of sign language to provide autonomous communication, Signed Music proves that even the most seemingly contradictory elements — music and deafness — can be united with creativity and community mobilization.

Similarly, physical disabilities and dance are not mutually exclusive. All bodies have physical limitations. For some reason, limitations caused by disability are seen as the most tragic and insurmountable. Wheelchair-users often cannot will themselves to walk but, to dance, you do not need to walk. Propeller Dance company proves that with its motto: “If you can breathe, you can dance” (Abilities Magazine, 2012). Propeller Dance brings together disabled and non-disabled people in the same performing group. To centre disability, “the company’s focus is on… creating choreography from movements that the dancers develop” (Abilities Magazine, 2012) instead of accommodating them in existing routines. The shared responsibility between the disabled and non-disabled members facilitates partnership and reduces power imbalance. Instead of excluding, art is used to unify: “I’m really comfortable with all kinds of people. We dance together. We’re good friends” (Abilities Magazine, 2012). Disabled people are often segregated or seen as a burden. In this case, Propeller Dance goes beyond integration, viewing difference as an asset. Shara Weaver, a co-founder, is quoted as saying: “Finding the common ground among dancers whose bodies are innately different from each other is creatively interesting” (Abilities Magazine, 2012). Being a physically disabled dancer is subversive by nature, allowing for all the rules to be played with. There is freedom in being contrary to the norm.

Propeller Dance company uses its platform for activism from art; “at schools, they include a question-and-answer session with the students to deepen their understanding of integrated dance and increase disability awareness” (Abilities Magazine, 2012). In line with disability art, the perspectives are coming from the community. Liz Winkelaar, a paralyzed member of the dance company, joined because she “wanted to balance that purely academic approach to disability.” When faced with adversity, “You have to be more assertive about your right to be included,” creating space where it did not previously exist. Member Moni Hoffman is quoted saying: “Dance is who I am.” Art is a source of meaning. Exclusion from art is exclusion from expression.

Disability art demonstrates that “disability is a vantage point, a perspective, a way of experiencing the world” (Sandahl, 2002, pg. 18). The purpose is to acknowledge that perspective, both to educate and validate. In contrast to mainstream media portrayals in which “disability is rarely considered anything but a problem, we need to find new ways of describing the experience” (pg. 19). Furthermore, we need new ways of sharing these stories. Signed Music and Propeller Dance are examples of just that, but what about the theatrical arts? Actors remain a step behind, having “challenged dramaturgical content by dismantling oppressive narratives, few challenge theatrical form” (pg. 21). Learning from the capital-D Deaf community, “we must pay attention to our impairments as well as our disabilities” (pg. 21) to fight for full access. Adding to Signed Music, the space in which performances take place must be altered. “How might consideration of disability transform the aesthetics and use of theatrical space altogether” (pg. 23)? The configuration of theatre spaces communicates what voices are valued and who is worthy of consideration. In theatres “without disability access, disabled people literally cannot enter certain spaces, even when granted ‘permission’” (pg. 24). This sends a silent but powerful message to disabled performers: your story is not valid and your art is not wanted. Accommodations can sometimes be made if a performer advocates for themself and if they are considered worth the effort. Even then, their needs are an afterthought, not considered as important compared to the needs of others. There is fantastic art in the disability community that will never be seen if performance spaces do not exist; revolutionary art is at the mercy of designers. In all of Toronto, there are only two venues considered fully accessible, The Garrison and D-Beatstro, meaning “it’s the responsibility of the person with the disability to find solutions to problems that shouldn’t be there in the first place” (Rizza, 2017). Our next step is demanding accessible venues, demanding consideration and expecting to be viewed as worthy of entering buildings.

Disability art is powerful, not only in its ability to redefine entire types of media, but also in redefining personal experience. For folks like Syrus Marcus Ware, “survival is in large part due to the ‘black crip magic’” (2016) found in the racialized disability community, specifically “the power and beauty of black disabled activists and artists making change, creating space, innovating, producing challenging and brave new works and articulating potential futures and ways forward together” (Ware, 2016). Without this magic, “autoimmune flare ups” which “affected when, how and where [Ware] worked” might have been crushing. However, our community presented “wonderful, new challenging career opportunities, new collaborations with wonderful artists and new kinds of organizing and mobilizing options manifested” for Ware, healing emotionally instead of physically. The flare ups cannot be helped, but the framing can.

There are limits in disability art that do not exist in mainstream art. For Ware, a new challenge presented when he “couldn’t see at all, and then not well for weeks” (Ware, 2016). Compromised vision forced him to abandon his current hyper-realistic art project to instead “pause in the middle of a storm, to be humbled, to be human in moments of unreal chaos” giving him “time to lie in the grass, imagining the sky” and allowing himself to “reach out to people, to be offered and to accept help.” Living a disabled life means questioning non-disabled norms forced upon you. For artists, “our value is measured by what we make. But what happens when we can’t make?”

Lynx Sainte-Marie, a black disabled spoonie (member of the pain-disorder community), produces art to heal themself and others. Their piece at Cripping the Stage articulated a “futuristic world where the experiences of folks with disabilities were seen as an appropriate reaction to a violent system.” In this world, “our bodies and minds were magical reactions allowing us to tap into another realm with essential messages for the survival of all life on this planet.” In their piece, “the survival of life on this planet relied on disabled people.” The premise is hyperbolic, but not unfounded. Disabled people are more in-tune with our bodies because we have to be; ignoring the painful messages being sent to us is not an option. Our relationship to our bodies is complex and often unreliable. For artists who utilize their bodies in their work, this is especially frustrating. Instead of being frustrated by the signals our bodies sends, Sainte-Marie proposes we be thankful. Our bodies might force us to alter the plans, but our bodies also force us to slow down and take care of ourselves. Ultimately that is more important and non-disabled people benefit from similar reactions.

There is a wonderful message of self-care in Sainte-Marie’s piece, but it goes beyond that. Ware, for example, exchanges gluten-free baked goods with a friend through mail. By thinking about each other and ensuring access to allergen-free foods, they are practicing collective care. Disability art is another way we practice collective care. Artists like Sainte-Marie remind us of our magic. We use art to communicate with one another, allowing us to feel heard and understood. Disability art is a love letter to your community, reminding them they are not alone.

My relationship with my disability is not easy to explain. It causes me constant pain and never lets me feel rested. My disability is also a source of strength. Mainstream media would have you believe that disabled people are insignificant, when really we are all around you. Non-disabled actors portray us a certain way, mystifying disabled ways of existing. We have refused to accept that. Deaf folks have redefined music and wheelchair-users prove anyone can dance. Access to theater spaces is still limited, but progress is being made and activists are not giving up. Instead of being discouraged, the lack of consideration is a platform for more change. Not only is disability art educational, it is also healing. Though reaching out to the non-disabled majority is important, we cannot forget about our community members. I am not an artist, but the work of folks like Syrus Marcus Ware and Lynx Sainte-Marie inspire me. I have been lucky enough to meet Sainte-Marie and subsequently become Facebook friends with them. Even when gallery space is not offered or cannot be accessed, simply posting your disability magic online promotes collective care. I proudly call myself disabled and I identify as a spoonie, a term deeply embedded in my community. I am learning how to live a disabled life and how to not hate myself for doing it. My body is revolution and my body is wisdom. That is what disability has taught me.

Written by Katarina Kahnert-Wolchak.

Reference list

Abilities Magazine (2012). Shall We Dance? Experience the Magic of Movement With Integrated Dance in Abilities Magazine.

Canadian Cultural Society of the Deaf (2015). Signed Music Rhythm of the Heart in Deaf Arts Handbook Series, 2, 1-19. Toronto, ON: Canadian Cultural Society of the Deaf.

Hirandani, V. (2005). Towards a Critical Theory of Disability in Social Work in Critical Social Work 29 (1).

Rizza, A. (2017, March 28). Disability Art: How Do You Participate If Only Two Toronto Venues Are Fully Accessible? in The Eyeopener.

Sandahl, C. (2002). Considering Disability: Disability Phenomenology’s Role in Revolutionizing Theatrical Space in Journal of Dramatic Theory and Criticism 16 (2), 17-32.

Ware, S. M. (2016, December 28). Magic from the madness: On black disabled activists and artists making change in 2016 in CBC News.

Woodburn, D., & Kopić, K. (2016). The Ruderman White Paper on Employment of Actors with Disabilities in Television (pp. 1-41). Ruderman Family Foundation.