Photo Courtesy of Kelsey Savage & John Woods, Real Talk

On paper, Alison Klein is a serious academic with a master’s in interdisciplinary studies focused on adult education and disability. Meet her at one of the Real Talk’s free public events (affectionately known as “pizza parties”), and she’ll be the first to greet you as a peer facilitator and make a joke—sometimes with anatomically correct models at the ready.

“I go, ‘Look, a present’, and then just walk away,” says Klein with a smile. “I have kind of a funny side.”

Founded and managed by sexual health educator John Woods, Real Talk is an initiative based in Metro Vancouver that supports people with intellectual and developmental disabilities (IDD). Woods has worked in community living spaces, schools, and sexual health organizations since the early ’90s, both in Canada and in London, UK. He saw the urgent need for sex education tailored to the IDD community, and a slew of intersectional barriers rooted in eugenics. Now, in between pizza parties and Q&As, Real Talk works with the community living sector to support providers and those with cognitive disabilities.

“Step five is getting the public to acknowledge and affirm that folks with intellectual disabilities could be LGBTQ,” explains Kelsey Savage, Real Talk’s project developer. “Step zero is the general population believing that folks with intellectual disabilities have a sexuality at all.”

Since its founding in 2017, Real Talk has grown to include both certified sexual health educators and peer facilitators with lived experience, ensuring its initiatives are driven by community needs. While the disability rights rallying cry “nothing about us without us” has existed for decades, Real Talk remains one of the few accessible sex-positive resources that centre self-advocacy. It provides an extensive library of YouTube videos addressing common questions around sexuality and disability. Savage also oversees Connecting Queer Communities (CQC), a social group for 2SLGBTQIA+ folks with cognitive disabilities to connect across the Lower Mainland both in person and online. People often attend both Real Talk and CQC events, and several have joined Klein as peer facilitators themselves. As facilitators, honouring education and community could mean helping someone explain orgasms to their partner one day, and being with someone’s deepest traumas the next.

“It’s happened a number of times at our events, where people have discovered they’ve been taking birth control and it’s been called a vitamin, or they’ve had an IUD and they didn’t consent to it,” says Savage. “There’s already a lot in the room before you step into it.”

As Real Talk works across communities to expand its outreach, what’s needed to ensure the future of good sexual health education is clear: government-sponsored education and publicly funded accommodations and support so people with cognitive disabilities have an equitable pathway to become sexual health educators. “I want to ideally work myself out of a job,” teases Savage.

“Earlier, I was mostly around staff and disconnected from my community,” Klein says. “I hope Real Talk is a starting point, and that sex education can be taught in schools to kids from all different backgrounds, so they all have a frame of reference [for] each other.”

Illustration by Dushan Milic

IN 1958, 11-YEAR-OLD JIM DERKSEN was hospitalized for polio for the second time, alongside many other children who’d been caught by the epidemic. The virus caused him to lose the use of his legs when he was just six years old. It was during this hospital trip, however, that he encountered a nurse who verbally abused the young patients and also sometimes hit them. The young Derksen decided he had two choices: speak out or suffer in silence. Derksen chose to speak out; the abuse stopped. It was the moment that changed everything, he says, and when his activism began to take shape.

“I had a growing awareness for the very oppressed social role that I was being put in,” says Derksen. In a dorm room at the University of Winnipeg in the late 1960s, he once again encountered the do-something- or-stay silent choice. His roommate, who was visually impaired, was having difficulty studying. In response, Derksen decided to create a service that transcribed textbooks onto audiotape. He later expanded this idea to include students with learning disabilities, such as dyslexia. His work to better the lives of people with disabilities did not stop there.

In fact, Derksen has been an unignorable presence in the movement for self-representation of people with disabilities since the 1970s. The Manitoba League of Persons with Disabilities, the Council of Canadians with Disabilities, Disabled Peoples International, and the Canadian Disability Rights Council all have one thing in common: Jim Derksen. He is a founding member of both the Council of Canadians with Disabilities and the Canadian Disability Rights Council.

He has also worked as a key member of The Manitoba League of Persons with Disabilities. He has helped to change government policy. The Special Parliamentary Committee on the Disabled and the Handicapped used Derksen’s knowledge to draft the 1980 “Obstacles” report, which offered new perspectives on the experiences of people with disabilities and was meant to change the Canadian government’s understanding of people with disabilities. As a part of the United Nations International Year of Disabled Persons in 1982, the UN employed him to lead and organize representatives from 40 countries across the globe to develop policy to include people with disabilities. While he chaired the Winnipeg Taxicab Board in the 1980s, he brought in metered wheelchair-accessible taxis to ensure those who use wheelchairs pay the same fare as those who don’t, making day-to-day life easier for Canadian people with disabilities. He even once followed Jean Chrétien into a washroom, back when he was Canada’s Minister of Justice, to lobby for the inclusion of physical and mental disabilities in the Canadian Charter of Rights and Freedoms. Today, you can find both in Section 15 of the Charter.

Vocal on all aspects of disability rights, Derksen is perhaps loudest on the issue of euthanasia. “Many people with disabilities have been killed in the name of mercy,” he says. Tracy Latimer, who had a severe form of cerebral palsy, was 12 years old when her father, Robert, killed her in 1993. The Latimer case is one Derksen will never forget. Robert put his daughter into his truck and pumped exhaust into the cabin until she was dead. Initially charged with first-degree murder, Robert was convicted (twice) of second-degree murder and ultimately sentenced to life in prison with no chance of parole for 10 years. The judge presiding over Latimer’s case called Tracy’s killing a “compassionate homicide,” and—overruling the minimum sentence—sentenced Robert to less than two years in jail, a decision the Supreme Court of Canada ultimately overturned. Tracy’s death opened up a conversation on what constitutes assisted suicide and how people with disabilities are often not afforded self-determination because of their undervalued place in society.

“There was an unwillingness to prosecute him because he was seen as a victim of his own daughter,” says Derksen, “in the sense that she was so cruel to be so disabled to have caused him to kill her.” Today, many people in the disabilities rights community reject assisted suicide, thanks to the Latimer case, which introduced the fear it would leave people vulnerable. “Many people don’t think our lives have any value,” says Derksen. He argues that assisted suicide in Canada is a product of the participation of people and institutions in the mainstream. He believes they are participating in injustice and adds that it leaves those with disabilities defenseless to those who do not value their lives. Still, he is hopeful for the future of people with disabilities.

Derksen sees an increasing public awareness when it comes to the unfair treatment of those with disabilities. This includes expanding the range of disabilities to address a wide spectrum, such as “invisible disabilities,” like mental health conditions. The self-representation of the autistic community is particularly optimistic, he adds. “They don’t see their autism as a disability but as a difference,” he says. Successful activism is built on a common cause, he says. “Many things become possible when you have a group of people who are impassioned about a cause.”

I learned about Kats at the 2014 Beauty Confidence Canada Awards, where she had won an award but, due to health issues, could not attend the reception. I became interested in learning her story  and I soon found out she was a real life Archie character! I had to know more. Kats is a woman many of us can relate to in some way. She had been through a lot in her life, “People have found inspiration from my real life story,” she said in our 2014 interview. “I’ve personally triumphed over a childhood car accident, sexual abuse in my teens, anorexia, depression and divorce in my adult years. I’ve never let anything or anyone stop me. I refuse to give up.” This refusal to give up is what drove her.

English was her second language. Kats learned how to read by piecing stories together through illustrations in picture books. Seeing her as an adult—in her hot pink wheelchair and fancy headpieces—it wasn’t surprising to learn Dr. Seuss appealed to Kats. By the age of nine Kats was getting lost in books. It was on the way to a Scarborough bookstore that someone drove into her mother’s car. It was a bad accident. Kats was sent to SickKids Hospital, where she stayed for six weeks before being sent home in a body cast. She continued to be on and off bed rest for the rest of her life.

Rest may not be the appropriate word, though. Back to the Archie comic that first made me want to know more: As a kid, Kats liked to read Archie comics. Yet, while the stories were great, she had no character to truly relate to. As she got older, she developed a comic strip series called The DitzAbled Princess. This series brought her to the 2013 Toronto Fan Expo, where she met Dan Parent, her favourite writer and artist of the Archie series. Looking him in the eye, she asked how it was possible for Riverdale to have no characters with disabilities. And so came Harper Lodge, a columnist who uses the pen name Jewel. It seems only natural for such a vibrant woman, in spirit and style, to become a comic book character.

Kats continued to ensure characters with disabilities were represented in her own children’s books, like the popular Cinderella’s Magical Wheelchair and Hansel and Gretel: A Fairy Tale with a Down Syndrome Twist. In her book Reena’s Bollywood Dream, Kats writes about sexual abuse. Kats didn’t stop there. Just like she wanted a character to relate to in storybooks, she wanted a fashion-themed word search book to do for those days in bed. So, she went ahead and made one.

When Kats found out I was writing for Anokhi she told me how much she wanted to be involved with them. I sent her the editor’s way and immediately after she was at their 12^th Anniversary awards show, collecting another award—as Crusader of the Year for People with Disabilities—for her ever-growing collection. A week ago, on her site, Kats posted a picture of this past summer’s PanAm Games, where she carried the Pan American Sports Organization (PASO) flag during the opening ceremonies. She was very excited about that.

I’m heartbroken over the passing of Kats. After our initial interview we kept in touch and to hear encouraging words from someone so driven is invaluable. Judging by social media, many others feel the same way.

A former This intern, Hillary Di Menna is in her second year of the gender and women’s studies program at York University. She also maintains an online feminist resource directory, FIRE- Feminist Internet Resource Exchange.

Also problematic: In 2010, when the Conservatives cut the long-form census, they also nixed the Participation and Activity Limitation Survey, better known by its acronym, PALS—those who received the survey were the same people who, on their census form, said they had a disability. PALS was used to track the needs of Canadians with disabilities, and looked at everything from rates of poverty, violence and abuse, to quality of housing, education and employment, and participation in community and civic activities. From there, government, but also more importantly advocacy groups, could use the data to better determine needed supports. The government has since introduced the Canadian Survey on Disability, but acknowledges that its data sets can’t be compared to PALS because of different questions and, notably, a different definition of the actual term “disability”—stunting a body of research. The new survey also received fewer responses, which advocates feared.

Perhaps that data could have been used to help the government figure out how to spend the near $40-million budget for the Opportunities Fund, a fund designed to help those prepare for, maintain or find employment. Unfortunately, in 2013-2014, the government failed to allocate one-quarter of its funding—undermining yet another promising initiative for those with disabilities.