Mammograms are routine. For people who use wheelchairs, they’re anything but

The last time Martha Twibanire had a mammogram, she had to call three different clinics before finding one that would accommodate her wheelchair.

That was more than four years ago. The experience was so bad she hasn’t booked another since.

Twibanire said staff first tried to make her stand up rather than stay in her wheelchair, something she told them wasn’t possible. The staff seemed frustrated and unsure how to proceed after that, she said.

Then they took her breast, squeezed and pulled it to try to get it to reach the machine.

“Really, I was in pain, too much pain,” she said in an interview from her apartment in Montreal.

“You feel uncomfortable and you feel not welcome,” she said. 

“I cannot go back there.” 

Problem isn’t new

Advocates in Quebec say Twibanire’s experience highlights a years-long problem for people in wheelchairs when they try to access mammograms.

A Quebec advocacy group, The Regroupement des activistes pour l’inclusion au Québec (RAPLIQ), recently contacted 94 clinics across the province that offer mammograms. The result, they said, was that 43 per cent advised they couldn’t accommodate people who use wheelchairs.

It was the group’s fourth time surveying clinics since 2014, and it says the situation has not improved.

The group said clinics gave a range of reasons, including the accessibility of the buildings and limitations of the mammogram machine.

“Every reason is good to tell us that no, they don’t want us,” said Linda Gauthier, who uses a wheelchair and is RAPLIQ’s co-founder.

Her last mammogram was in 2014, an experience she describes as humiliating.

Like Twibanire, she was also asked to stand but wasn’t able to.

“I felt like a burden,” said Gauthier, who is hoping her group can meet with the provincial government about the issue.

“They made me feel guilty for not being able to stay on my feet.”

Government ‘firmly denounces’ situation

The office of Quebec Health Minister Christian Dubé issued a statement to CBC News denouncing the situation.

“All women eligible for breast cancer screening must be able to have access to mammography, without exceptions,” the statement said. “An important reminder will be given to designated screening centres.”

In a separate statement, Quebec’s health ministry noted “all mammography machines in Quebec can adjust to the height of a wheelchair, provided the wheelchair arms are removable.”

Currently in Canada, regular screening mammography is recommended every two to three years for patients between the ages of 50 and 74.

But the problem isn’t limited to Quebec, said Kirsten Sharpe, a disability inclusion advocate in Vancouver who uses a wheelchair.

She has never had a problem getting a mammogram in British Columbia, which has a mobile screening unit and provides information online about accessibility options. Still, she said, problems can persist.

“I have had friends who called the exact same location that I went to and they were denied access,” she said. “It just depends on who answers the phone.”

Sharpe said education is key, ensuring that staff who work in clinics offering mammograms understand how to ensure access to everyone.

The New Brunswick Coalition of Persons with Disabilities, with help from the New Brunswick Medical Society, successfully lobbied the New Brunswick government to improve access to mammograms in the province’s hospitals.

The province installed mammogram chairs, which can help people with a range of physical disabilities by tilting their breasts more easily into the machine.

Shelley Petit, chair of the coalition, said the changes have convinced some people who had avoided the procedure for years to get a mammogram.

“They went for the first time because of the chair,” she said, noting that early detection of lumps is important.

“It’s saving people’s lives.”

Barriers to access

Agnes Berthelot-Raffard, associate professor of health policy and management at York University, said people with disabilities face many barriers to health care, including around breast cancer screening.

In turn, that fosters a sense of mistrust in the health-care system, which could put lives at risk, she said.

“If you cannot access mammography, that could defer the treatment you could receive if it happened that you have breast cancer,” said Berthelot-Raffard.

Berthelot-Raffard said governments need to do more to ensure people with disabilities can access to the care they need. She said this includes proper training for health-care professionals and ensuring people with disabilities are included in decision making.