Whenever Amy Diaz sees a flower or a leaf, she smiles.
“I like to see her smile. Lately, her smiles have been rare,” says Lucy Diaz, Amy's 15-year-old big sister. Amy, 12, has cerebral palsy, and has been almost entirely housebound for the past year-plus because she's immunocompromised – a mere cold can land her in the hospital. Meanwhile, she had spinal surgery last winter, which was difficult on the young girl, who is already often in pain.
While outdoor activities would be safe for Amy, spending time in a park like so many kids and teens have done during the pandemic, is a challenge. A mere bump on a path means her wheelchair gets stuck. Too much noise upsets Amy, who lives in Port Coquitlam, B.C., near several national parks, as does wind or a lack of shade. Most importantly, Amy needs a safe, convenient and truly accessible washroom if she needs to have her diaper changed.
If there's no adult-sized change table, Amy has to lie on the floor. This stresses her, so Lucy has to help and hold her thrashing arms down. Her mother, Carmen Aguilera, who is also Amy's full-time caregiver, must pick her daughter up if there's no powered lift. “My back is already damaged,” says Carmen, who has barely left the house herself lately. The last time she changed Amy on the floor of a washroom by herself, Carmen cried out of pain and frustration.
As a result of these challenges, Lucy has become a vocal advocate for truly accessible washrooms based on the Changing Places standard from the U.K. that includes an adult change table and a motorized lift, as well as a suitable space.
Lucy and Carmen have been sharing their insights about washrooms and the other barriers Amy faces in parks with a team at KITE. Their feedback is part of a unique, three-year research project called Accessible Parks Canada, headed up by Dr. Tilak Dutta, Director of the Engineering Health lab at KITE. The study aims to discover what keeps people with a wide range of disabilities from enjoying their experiences with nature. Barriers big and small impact whether or not people like Amy get outside, which has a profound impact on their already fragile mental health. Dr. Dutta and his team are going to find out what the lived experiences are in parks and suggest ways to make nature more accessible.
Most people take our national parks for granted, and with lots of wide-open spaces and beautiful scenery, you would think they would be accessible to anyone. Yet, a range of barriers prevent people from using parks safely – everything from steps leading to a lookout to uneven ground near waterfronts to confusing signage. It’s not just a handful of people who need user-friendly public spaces, either: 22 percent of Canadians over age 15 have at least one disability, and many suspect these numbers are much larger.
In 2019, the Accessible Canada Act received royal assent. Under the act, all Crown corporations and federally regulated organizations must offer barrier-free services by 2040, including Parks Canada. Right now, the country’s parks follow accessibility and disability guidance that’s more than 20 years old.
A year ago, Dr. Dutta received a $1.2-million grant from Accessibility Standards Canada to investigate the experiences of park users and create a list of recommendations on how to improve accessibility for individuals with disabilities. The organization will use those suggestions to create a formal accessibility standard for outdoor spaces in Canada, which includes our national parks. The standard is designed to be used by organizations like Parks Canada, which is a partner in the study, but the hope is that provinces and municipalities could also look to it to adapt their green spaces.
"Our focus is helping more people enjoy our national parks," says Dr. Dutta. That means everyone, including those who have physical impairments, neurological challenges, such as dementia or autism, as well as sensory impairments related to vision and hearing, he notes.
“We’re trying to map out a comprehensive picture of all the issues,” says Dr. Dutta, who admits this is a monumental task. That entails learning from people with disabilities as well as searching through academic literature, which is a challenge in itself.
“There’s not a ton written about national and provincial parks and the user experience,” explains Alison Whiting, project manager for the research project. So she, Dr. Dutta and the rest of the team are devising ways to incorporate so-called grey literature into their search, which includes newspaper stories with anecdotes about parks and accessibility.
The research team will also be collecting information from park users and their caregivers, including Amy and her family, through surveys and interviews. As well, the team is devising a digital search strategy to comb YouTube videos for snippets on experiences in parks. Dr. Dutta says these YouTubers have shot videos that show how they missed out on a view because of steps or because they came across dangerous, uneven gravel on a path.
Dr. Dutta’s son is in a wheelchair, so he knows first-hand how barriers crop up in outdoor spaces. Last summer, the family went to the Beach neighbourhood in Toronto, as they’d heard about beach mats being available. “This is a mat you put out on the sand so a wheeled mobility device can get to the water. It’s a struggle otherwise to travel over sand.”
But when the family arrived, try as they might, they could not see a beach mat anywhere, or anyone to help locate one. Even when he got home and called the city, Dr. Dutta could not find out where they’re stored.
"The information on the website has to match what’s really out there," he says. He notes that it’s exhausting to make such an outing and have it not work out. For the likes of Carmen, Lucy and Amy, meanwhile, not being able to locate a proper Changing Places facility, or confirm one is in working order, can turn a trip into a stressful disaster for an already burned-out family.
Indeed, having a truly barrier-free experience in a park is complex for so many people. Whiting notes that two people with the same disability diagnosis might have very different wants and needs. Dr. Dutta understands that people with disabilities may not expect full access to every single activity in a national park, so he’ll be collecting input that seeks to rank importance.
To organize the nuances of user barriers and the possible solutions out there – those either already being used in some parks, or available on the market in Canada, sometimes from startups few know about – Dr. Dutta will be creating a chart-like accessibility matrix. He will also design an assessment tool that parks can use, along with a list of recommendations for making outdoor spaces more barrier-free.
In Port Coquitlam, thanks to Lucy’s advocacy, the new community centre includes an accessible washroom with a powered lift and an adult changing table. When the family feels it is safe for Amy to visit, she can test out the pool, which has been made more accessible, or even just visit the library, as she loves books.
As they await more accessible parks in their region, Lucy will continue to bring her little sister natural tokens from her own outings – anything to bring joy to a sibling who can’t experience much because of the barriers. “Amy likes flowers and leaves and books,” says Carmen. “And anything with Lucy – Lucy is her favourite person in the world.”
This story is part of The Game Changers, a storytelling campaign featuring some of the groundbreaking research, innovative ideas and incredible people we have working behind the scenes to redefine the future of rehab at UHN. The series will run monthly through the rest of 2022 putting a spotlight on every corner of KITE, from our trainees, staff and scientists, to our labs, clinics and even the operating room.