Hamilton Spectator by Kathleen Martin Ginis 5 April 2016

He was doing so well. He should still be doing well.

He was a young man in our McMaster University exercise program for people with spinal cord injuries, MacWheelers. He had worked hard to build a good life after becoming paraplegic.

His twice-weekly workouts at our gym were relieving his pain so well that he’d been able to get off medication. He had a good, fulfilling job. He was thriving.

Then he got a new job and moved away, to a community where there is no place for the same kind of supported exercise.

When he stopped exercising, the pain returned. He went back to using narcotic painkillers. He had to give up driving. He lost his job.

He is far from alone, and there is no good reason for him or any person with a disability to be without access to the exercise that would make such a difference, especially when the problem is not a lack of demand, but a lack of information.

Nearly five million Canadians live with some form of disability. This segment of our population is at greater risk for physical and psychological health problems and less likely to participate fully in society.

Research consistently shows that participating in sports, exercise and other forms of physical activity significantly improves physical, psychological and social well-being.

Yet in Canada, we don’t have any data on physical-activity participation among people with disabilities. It’s a huge problem, with real consequences for real people.

Without numbers, there is nothing to use as a basis for allocating funding to programs, no benchmarks to tell us if our efforts to increase participation are working, and nothing we can use to make an economic case for investing in physical-activity programs for people with disabilities.

The UN Convention on the Rights of Persons with Disabilities requires signatories, including Canada, to “collect appropriate information, including statistical and research data, to enable them to formulate and implement policies.”

Not having good data means we are not able to adequately develop policy to support the convention’s requirement to provide full access to sport and leisure for persons with disabilities.

The last time information on physical-activity participation was collected from Canadians with disabilities was the 2001 Participation and Activity Limitation Survey (PALS). Those data are terrible.

The physical-activity survey was so poorly written that its results were virtually unusable. For instance, if we are to believe the results of that survey, 25 per cent of Canadians with disabilities are doing exercise or some other form of physical activity, every single day.

By comparison, we know that only five per cent of Canadians without disabilities are sufficiently active nearly every day. Given the barriers to physical activity facing Canadians with disabilities, the PALS numbers should be taken with a grain of salt. Never mind that our “best” data are now more than 15 years old!

We have recently learned there will not be any physical-activity data collected in the 2017 Canadian Survey on Disability.

In the U.K., physical-activity data have been collected from nearly 40,000 people with disabilities every year since 2005, using questions that align with public health recommendations for healthy levels of weekly physical activity. Every six months, new data from that survey are released to the public.

Likewise in the U.S., physical-activity data from nearly 85,000 adults were collected as recently as 2012. These data indicate that nearly 70 per cent of adults with a disability are not achieving public health recommendations for physical activity.

In Canada, we have no idea how many people with disabilities are sufficiently active for good health.

Prime Minister Trudeau has made a commitment to data-informed decision-making on how to invest program dollars in order to best serve the needs of Canadians. Good decisions can only be made with good data.

To make good policy decisions, to uphold our obligations on the UN Convention on the Rights of Persons with Disabilities, the 2017 Canadian Survey on Disability must measure physical-activity participation.

Kathleen A. Martin Ginis is a professor in the department of kinesiology at McMaster University. She is founder and director of SCI Action Canada and principal investigator on the Canadian Disability Participation Project.