by Gloria Swain

‘Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.’ ~ Audre Lorde

Conversations surrounding disability justice are very important because it puts people with disabilities at the center of the discussion and looks at inclusivity and support systems for disabled people. The disability justice movement targets the rights of disabled people through empowerment and liberation. This movement challenges abled bodied activists and society to create a more inclusive and social justice-based movement that addresses how issues such as race, class, gender and sexuality impact the experience of being disabled. As a Black feminist artist and social justice activist with a disability, I write this article to focus on the importance of self-care practices when doing this work.

As disabled activists, social justice organizers and community members, life can be exhausting sometimes. Activists can sometimes take on too much and burn out entirely and that’s why self care is an important part of activism, especially for people with disabilities. Self care means taking the time to nurture and support yourself. The impact of my own disability has affected my life in various ways, such as debilitating chronic pain, chronic fatigue and anxiety which can sometimes become isolating. My attempts to appear normal and disguise my pain with humor and my anxieties with unlimited energy represents a problem all activists experience. As I reflect on 2016, I am guilty of ignoring my mental and physical self.

In March, I took part in the fifteen day Black Lives Matter (BLM) Toronto occupation of the Toronto police headquarters at 40 College Street. This was in response to a lack of criminal charges against the police officer who shot and killed Andrew Loku in 2015, a Black man living with mental illness and in response to the refusal of Ontario Special Investigations Unit to release the name of that officer. On the final day, the crowd was preparing to march to Queen’s Park to meet with Premier Wynne to discuss systematic racism within the police department. As chronic pain and anxiety begin to affect my ability to walk, I was given the choice to ride in the back of the truck where I assumed the responsibility of dropping red roses along the route from police headquarters to Queens Park.

With very little time to rest, three weeks later, I was standing in solidarity with Occupy INAC (Indigenous and Northern Affairs Canada) at the Toronto office of Indigenous and Northern Affairs office. This occupation, in response to the inaction of INAC in response to the Attawapiskat youth suicides, lasted for nine days and again I ignored my chronic pain. As an elder, I was well taken care of with hot beverages and adequate warm blankets during the chilled night. During the Pride parade, in July, riding aboard Black Lives Matter – Toronto float, enabled me to take part in the historical halting of the Pride Parade where a list of demands from BLM was presented and agreed to by the Pride organizers.

July continued to be a busy time for me where I was moderator at York University for the Black Futures Now Toronto Conference, a gathering of Black women, femmes & gender nonconforming people who came together for a discussion about the identities we hold close to us as disabled/chronically ill/mad/spoonie Black folks. I ended the month talking as a speaker for the Girl Crush conference where I shared my experience of emotional labour and discussed the intersections of race, gender, disability and art.

The month of September saw me creating and curating a Black Lives Matter photo exhibit in the Crossroads Gallery at York University documenting my time at tent city. I also took part in a performance at the Art Gallery of Ontario (AGO), curated by artist and activist Anique Jordan titled “Mas’ at 94 Chestnut Street”, an envision of what Black history would have looked like in Toronto if it had been documented from the early 1990s. With the year ending, in November, I facilitated a series of workshops, Own Your Sexy, at the Theatre Centre where participants created works that represented the best of their sensual side. My artwork and photographs were part of Ryerson University Social Justice Week where I was also spoke about art and disability activism.

My solo art exhibit, Mad Room, at Tangled Art & Disability, was met with critical acclaim and closed the first week in December after a three-month run. The exhibition on Black women’s mental health had successfully raised awareness, opened conversation, and promoted effective self-care through art. With over fifty art pieces, installations and a filmed artist statement, the exhibit symbolized institutionalization, forced medication, domestic abuse and the stigmas that come with Black depression and disability.

I finally realized that the year’s activities had consumed me physically and mentally and in the end, I found myself alone and completely exhausted. As a disabled activist and sufferer of depression, my activism had taken a toll on my mental health. I now realize how easy it had been for me to forget to take care of myself and I was suffered through the pain.

By mid December, during the Christmas holidays, anxiety and chronic pain had completely exhausted me. I was in dire need of self-care and disappeared inside my tiny one-bedroom apartment for the remainder of the year to rest and regroup mentally.

In the new year, after three weeks of self-care, I was back in full force and successfully launched an online #BellLetsActuallyTalk campaign which successfully became one of the most shared posts on social media. The faces of the Bell Let’s Talk campaign are wealthy white people who are not able to speak for people of colour or people who live in poverty and experience mental health issues. Every year, the Bell Let’s Talk campaign puts up billboards encouraging people to talk about mental health but these billboards are far from inclusive. It’s difficult to talk about mental health when you don’t see yourself represented in these conversations. I am hopeful that Bell will respond by including people of colour in their future mental health campaigns. Back in full protest mode, I took part in the Toronto Water is Life protest at Trump Tower in solidarity with Standing Rock and in February, I marched in the #NoBanOnStolenLand protest that occurred in response to the American travel ban, that saw thousands of people take to the streets, chanting in support of refugees and migrants, and against Islamophobia.

During this hectic and emotional time at the hands of a greedy, racist, sexist, homophobic and Islamophobic Trump government that has clearly made a negative impact in Canada, it is easy to get caught up in moments where you neglect your own needs. As an activist with an unseen disability, I had to learn to take time to rest which helped me to be a better activist and a healthier person. I am fortunate to work with organizers, protesters and allies who are sensitive and accommodating. My advice to other disabled activists and artists is to take care of yourselves and find people/movements that do not discriminate against people with disabilities and who are willing to assist and find ways to include disabled activists in movements.


Gloria Swain

Gloria Swain

Gloria Swain is a visual storyteller and multidisciplinary artist whose work stimulates an understanding of mental illness. She was 2016 Artist in Residence at Tangled Art & Disability and has shown throughout Toronto and is currently completing her Masters at York University. Her practice also includes work as a community arts facilitator and coordinator of art making spaces. She uses art to explore inter-generational trauma and healing.