Back in 1964, when I proudly sewed stars onto the middy I wore to my weekly Explorers meeting at Alderwood United in Etobicoke, Ont., I couldn’t possibly have foreseen how a girlhood motto would shape my life as a disability activist. To share our generational approaches to being “doers” in the world, I met with Sarah Jama, a dynamic community organizer, and we interviewed each other.
When you introduce yourself, what do you most want people to know?
Jama: I’m the co-founder of the Disability Justice Network of Ontario, based in Hamilton. I’m a 24-year-old community organizer who works on the intersections of race and disability, against all the forces in the universe (mainly capitalism and colonialism) that try to tell me I have no business existing. I’m a board member of the Afro-Canadian Caribbean Association and have given over 100 talks on justice.
Palmer: I’m 63, a disabled writer, mom, binge knitter, retired drama teacher and union activist. After childhood surgeries on my feet to correct what were then called “birth defects,” I walked unassisted until my 40s. As I aged, I needed a crutch, then a walker. While disabled people are 22 percent of the population, I’m living proof that over a third of Canadians will be disabled by the time they are older than 65.
Was the choice to fight for disability justice linked to your childhood, family or faith?
Jama: As a Black woman with a visible disability who grew up in a single-parent household, I faced so many barriers that I internalized. Doctors insisted I repeat botched surgeries for reasons that were more about aesthetics than quality of life. Teachers told me I’d never make it to university. Strangers applauded my friends for being friends with someone like me. Authority figures told me the bullying was all in my mind. I never learned that being the way I was was normal. Growing up this way causes a complacency of the soul. You believe there is no issue worth fighting, because your existence is the root cause.
My thinking shifted in Grade 12, when a classmate in a wheelchair mentioned he wanted to attend a school of the arts in Toronto, but it didn’t have an elevator. In that moment, I stepped out of my individual experience and self-blame, and I allowed myself to get angry that a publicly funded school prevented my friend from reaching for the stars. This experience was the first of many that got me thinking about systemic inequality in ways that made me yearn for justice on more than an individual level.
Unless we learn to take care of the most vulnerable, those who aren’t seen as beneficial to the state in terms of cash flow, we will never build a better world.
Palmer: It is so interesting to hear you, Sarah, talk about internalizing shame and not permitting yourself a righteous anger. I did that for years. Despite being raised in the United Church, which believes in equality, I never felt equal. My shame came from my limp, my ugly orthopedic oxfords and feeling like an outsider in my family. I channelled my anger into fighting for everybody but me. I’m adopted, and I helped other adoptees search for their birth families, but couldn’t do so myself.
When language changed, I changed. When “handicapped” became “disabled,” I had an identity, not just a diagnosis. When I heard the term “internalized ableism,” I could name the shame that silenced me. As an intersectional feminist, I saw that “abled privilege” normalizes, values and rewards abled people.
A decade ago, when I first heard the term “decolonize disability,” I realized I’d believed the lie that tells us if we aren’t fit workers and consumers, we’re worthless. When I discovered the international disabled community on social media, they helped me understand that I’m “multiply marginalized” — a disabled senior living below the poverty line in one of the richest countries on Earth. That’s when I finally stopped feeling ashamed and alone and claimed my righteous anger.
For three decades, the motto of the disability community has been “Nothing about us without us.” How is this critical today?
Jama: Unless we learn to take care of the most vulnerable, those who aren’t seen as beneficial to the state in terms of cash flow, we will never build a better world. We’ll continue to hunt, harm, bomb and destroy people and lands viewed as “the other.” We’ll continue to engage in modern eugenics, the practice of deciding who deserves to live and who doesn’t, through funding decisions by the state. This includes funding childhood disability programs but not enough adult programs. It includes a lack of accessible affordable housing and the wrongful imprisonment of people with disabilities.
When Doug Ford, who is now Ontario’s premier, spoke against a group home in 2014, he said, “Anyone who wants to criticize, I’d be more than happy to take their address, and we’ll put the house right next door to them and see how they like it.” This language is used throughout history to dehumanize those who some believe are unworthy of a quality life. But the colonial state has not, cannot and will not exist without people with disabilities. We have always existed and must begin to take the helm in pushing for justice.
Palmer: As a disabled writer, I know representation matters. In fair representation, 14 percent of Canadian books would be by disabled authors; today, it’s closer to three percent. This is the result of a CanLit run by abled writers, abled agents, abled editors and abled publishers, who value and perpetuate abled voices. Most retreats, readings, festivals, launches, bookstores and literary events are inaccessible, with barriers at the door, a stage with stairs and inaccessible washrooms. We can’t take a seat at the table if we can’t get to the table. When abled writers appropriate disabled experience, they typically produce “inspiration porn”: tales in which disabled folks either “bravely overcome” disability or obligingly die. The presence of disabled people and stories of disabled lives are essential components in building the united, inclusive front we need.
How is disability justice linked to the struggles of other marginalized communities?
Jama: There is no liberation without disability justice at the core. Ableism is historically linked with all injustices: from slavery, where bodies were labelled and sorted by colour, to a Canada where women with disabilities and Indigenous women were sterilized without their knowledge or consent, under Alberta and B.C. sterilization acts. Disability justice uplifts the largest minority in the world, because we come from every race, religion, geographic location, sexual identity and age. But we are the most silent. We’ve allowed the world to believe the lie that people with disabilities aren’t “relatable,” that our struggles exist in isolation.
Palmer: You summed this up perfectly. Disability justice is about being respected as equal partners. It’s about valuing, supporting and amplifying all the multiple marginalities that disabled folks offer.
How can abled people become better allies?
Jama: Think about all of the times you have viewed someone as less competent because of their disability. Challenge how you view independence and productivity. Add accessibility into your budget, because challenging ableism takes resources. Begin to think in ways that see racial injustice, ableism, sexism, cisnormativity [the assumption that everyone identifies with their biological sex] and toxic masculinity as connected. Empower your disabled friends. Make space for the differences that make you uncomfortable, and question why you feel this way.
Palmer: Abled allies listen. Abled allies pass the mic.
What change would you like to see in 2019?
Jama: My team and I have started the Disability Justice Network of Ontario. We want to talk about the fact that people with disabilities are twice as likely to experience a violent crime or sexual assault. We want to raise awareness about the violence that people face in our policing systems, prison systems, through our social services and in our daily lives.
Palmer: I’d like to see CanLit take a vanguard role. We’re starting to see funding and prizes dedicated to disabled writers. We still need the active allyship of abled readers and writers who will refuse to use inaccessible spaces, who will put their bodies on the line with ours to insist upon equal inclusion. In short, to quote the Explorers’ motto of my childhood: We need doers of the Word, not hearers only.