Tessa Smith has accomplished so many things in her young life that you could not blame her for taking life easy for once. But, no, the disability activist and Trent University student in Peterborough, Ontario, is once again in the vanguard with a brand new idea to connect post-secondary students with disabilities across Canada — and, soon, across the globe.
It’s called Chatability. and Tessa, who is 19 and has experienced both eye and bone cancer and a leg amputation, launched it July 1. It’s an online forum for students to connect, feel included, share ups and downs, and fight for disabled rights in their schools and communities — something that is very much needed, she said.
“We are seen as unacceptable and we get shoved down.”
“As someone who has physical disabilities and with mental health issues, I realised there was no forum or on-line community for disabled students,” Tessa, who lives near Peterborough with her parents Annie and Rusty and two Goldendoodles, said in a recent interview with JOURNEY Magazine.
“I used to be afraid to associate myself with disability. There are negative connotations and discrimination. But this is what I am and I try now to make more active change and shut down disability discrimination.”
On her newly created website, she explains her main motive for starting Chatability was the fact that most post-secondary institutions (including Trent) are not disability friendly. “Between the obsessive amount of stairs, lack of ramps and elevators, to next to no options for braille or interpreters in lectures or seminars, it is a bit of a mess – and these are just some issues scratching the surface.”
Tessa was diagnosed with Bilateral Retinoblastoma (eye cancer, cancer of the retinas affecting both eyes) when she was three months old. After going through one cycle of chemotherapy, the treatment had the opposite effect of what it was supposed to do and blew the tumor apart in her right eye. The eye had to be removed. Her left eye had four tumours which were treated with chemo and laser treatment. She went into remission for six months, but later developed three new tumours within that eye; luckily those tumours were caught early enough and were lasered.
Thirteen years later, having known all along that she had a 4% chance of developing Osteosarcoma (the same bone cancer that Terry Fox had), she was diagnosed with it and endured seven months of intense, high-dose chemotherapy. She had a Rotationplasty amputation of her left leg in the summer of 2012.
While now in remission for almost six years, she lives with chronic physical pain because of an accidental slip a year after the amputation. Since then, she suffers from chronic edema in the foot and ankle of her Rotationplasty foot, as well as chronic pain. Typically, with a Rotationplasty amputation, people are still able to be incredibly active with their new limb; because of her chronic illnesses, she is not so lucky. Recently she has begun using a cane, and occasionally her wheelchair.
However, Tessa does her best to not let her disabilities determine what she is able to do. She’ll be starting her second year at Trent in September, majoring in English Literature. She was elected last Spring to be Disability Commissioner with the Trent Central Student Association for the coming school year. She is also one of two students on the university’s Board of Governors. In these positions, she hopes to bring awareness of the architectural issues at Trent that affect people with disabilities.
“There’s so many stairs,” she said. “It’s just a nightmare getting around.”
Some ramps are too steep and most are out-of-the-way, she continued.
“I love my school but it really needs to think these things through. They have good intentions . . . but it could go so much further.”
Tessa will be working exclusively on Trent Orientation Week’s Brave Space Team this year facilitating an Accessibility Session (and an LBGTQ+ Session) for incoming students, providing resources and accessible activities.
In 2016 she was the Terry Fox Poster Girl all across Canada. She has been an Ambassador with the Terry Fox Foundation and with SickKids for six years, sharing her story through motivational speaking engagements.
She has been a freelance journalist for the last four years, having been published in newspapers such as the Toronto Sun, Toronto Star, and Peterborough Examiner (where she now has a bi-weekly opinion column titled ‘Tessa Takes Charge’). When she was 16, she had a short documentary made about her life, called ‘Being Tessa’, which showcased at Bloor Street Cinemas in Toronto in 2014.
Tessa said she’s been a writer as long as she can remember, and hopes to write fiction and an autobiography in the future, as well as continue her work as a disability activist.
“The fact is,” she says on her website, “the disabled community is the most oppressed community worldwide, as we sit just on or below the poverty line. This simple fact should be enough for us to fight for our rights, without even beginning to factor in the intersections of the oppression faced when thinking of disability through race, gender, age, etc.”
”Together, we can rise above disabled oppression, and bring accessibility awareness to all.”
Chatabilityhas some great resources on general information about the disabled community, as well as important dates and support systems, issues and triumphs facing people with disabilities.
By Melodie McCullough