There are lots of conversations about the lack of diversity in science and tech these days. Along with them, people constantly ask, "So what? Why does it matter?" There are many ways to answer that question, but perhaps the easiest is this: because a homogenous team produces homogenous products for a very heterogeneous world.
This is Design Bias, a Motherboard column in which writer Rose Eveleth explores the products, research programs, and conclusions made not because any designer or scientist or engineer sets out to discriminate, but because the "normal" user always looks exactly the same. The result is a world that's biased by design. -the Editor
In 2014, Linda Gauthier decided it was time for a low-dose x-ray to check for breast cancer. But when Gauthier, a disability activist in Montreal, called a public clinic hoping to schedule a screening, she says she was informed that the mammogram machine couldn’t accommodate her. Gauthier, 61, uses a wheelchair, and says she was told the clinic’s machine was too old and couldn’t be lowered to an appropriate height. Instead, she was advised to bring someone with her, to hold her up to the machine.
Gauthier then tried other clinics—and says she was given the same answer. In response, she requested a meeting with Quebec Health Minister Gaétan Barrette, whose secretary apologized to Gauthier and told her that Barrette wouldn’t be able to meet “until next year.”
“Okay, no problem,” Gauthier replied. “But you’ll be all over the newspaper tomorrow.” She got a meeting two days later.
Barrette has since vowed to craft provisions related to disability accessibility at such clinics, and suggested revoking permits for those that refuse service to disabled folks. Canada doesn’t have a true equivalent to the US’s Americans with Disabilities Act (ADA), so its accessibility rules are pieced together through updates like this one. “There will be in the very near future provisions because this is absolutely unacceptable,” Barrette told the CBC in 2014.
Barrette’s office did not respond to a request for comment.
“I am afraid you may have to call around to find this.”
But despite Barrette’s advocacy, Gauthier doesn’t think much has changed.
Last year, Gauthier, who currently serves as treasurer of the disability advocacy group RAPLIQ, called a clinic—one she hadn’t previously contacted—to request a mammogram, and said that, once again, the receptionist she spoke with was audibly uncomfortable, unsure if the machine in use could even accommodate her. Her wheelchair armrests could be removed and the machine lowered, Gauthier explained to the receptionist, who cautiously booked an appointment but couldn’t guarantee Gauthier would actually get a mammogram when she arrived.
This kind of exclusion doesn’t exist in a vacuum. Experts still debate exactly at what age, and how often, women should get mammograms, but the general consensus is that for women between the ages of 50 and 75 the potential benefits of screening for breast cancer outweigh the risk. According to a 2011 US Centers for Disease Control and Prevention study, women with disabilities were less likely to get regular mammograms than women without.
“You feel so excluded,” Gauthier recently told me over the phone. “You feel like you’re from another planet, that you don’t deserve help, that you don’t have any access to the health system.”
If you’ve never had a mammogram, here’s what the procedure entails: you show up to a doctor’s office, remove your shirt and bra, put on a medical gown, walk up to a seven- or eight-foot-tall machine that looks a bit like a gigantic plastic wrench, and place a bare breast onto a ledge. A technician then lowers an arm holding another flat plate. Essentially, these two pieces of the machine squeeze together, sandwiching your breast, and then low-dose radiation x-rays are used to generate an image of the issue inside. Then, assuming you have two breasts, you repeat with the other one.
No matter who you are, the compression can cause slight discomfort or tenderness in the breast as it’s happening, but each step of the process can be trickier for people with disabilities. Removing a shirt or bra, something many people take for granted, can be a challenge unto itself. Not everyone can then walk up to the mammogram machine and stand upright for the duration of the mammogram (which can last between 15 and 30 minutes, depending on how many pictures need to be taken and from what angles). Those who can’t position their own arms might need a tech to help them move their body a certain way.
These days, many mammogram machines indeed can be lowered enough to accommodate someone in a wheelchair. But a receptionist might not necessarily know this, and assume the machine can’t service someone who needs that kind of accommodation. Even if some machines can technically accommodate people in wheelchairs, that doesn’t mean getting a mammogram is always possible.
Gauthier's story is not uncommon. As someone who works for a disability rights group, she says that she regularly hears stories about people in her community being denied access to mammograms. For those who use wheelchairs, the issue also comes up every so often on internet forums and online communities. “Can anyone point me in the right direction to finding a mammogram machine that is made for women who can not stand for the procedure?” asked a user on the forum Care Cure Community. “I am afraid you may have to call around to find this,” another user going by “SCI-Nurse” answered, summing up most of the responses you see to the mammogram question. “Of course under the ADA this is required, but sadly does not exist most places.”
(Technically, the ADA prohibits discrimination against people with disabilities. But anybody who’s disabled can tell you that mandate doesn’t fully translate to universal access.)
In some cases, when a mammogram machine isn’t accessible, doctors will try another method to screen for breast cancer. Lene Andersen, a woman with rheumatoid arthritis who uses a wheelchair, wrote on her blog that she’s never had a mammogram due to the inaccessibility of clinics, and that even screening alternatives like ultrasounds, which aren’t as effective as mammograms and likewise prone to their own design bias, have left her feeling excluded.
“Several years ago, I had an ultrasound instead,” Andersen wrote. “The gel that was used was scented—I assume in an attempt to make the experience as pleasant as possible. Instead, it triggered an asthma attack that lasted for days. The next year, I asked if they had fragrance-free ultrasound gel. After an exhaustive search in the entire hospital, the answer was no. So I did not have an ultrasound.”
A 2013 study found that people with more “complex” disabilities were less likely to get screened for breast and cervical cancers than those with less complex disabilities. And without screening, disabled individuals might be more likely to miss earlier warning signs. Previously, a 1999 study had found that people with cerebral palsy were three times more likely to die of breast cancer than the general population; a 2004 study found the same thing across all kinds of disabled women. These higher death rates can’t solely be pinned on lack of screening access, to be sure. Exactly how much of this is because of the failure to detect cancer early via mammograms, we simply don’t know.
Which is to say, it’s not just the mammogram machine that can cause problems. After all, disabled people in the United States are more likely to be unemployed, without health insurance, and living in poverty.
An encouraging 2017 CDC study that looked at the differences in screening rates between disabled and non-disabled women did find the gap had largely closed. “Once we controlled for sociodemographic factors, there was not a statistically significant difference in odds,” JoAnn Thierry, a CDC scientist who was not directly involved in the study but has studied barriers to screening in the past, told me in an email.
The biggest predictor of whether a woman gets a mammogram or not, according to Thierry, is whether their healthcare provider suggests one.
Women with and without disabilities were equally likely to receive mammogram recommendations, according to the 2017 CDC study on differences in screening rates, although earlier research found that women with disabilities were less likely to receive such a recommendation. That 2017 CDC study did, however, find a key disparity between women with disabilities and those without: When asked why they didn’t get a mammogram or pap smear, the second most common answer from folks with disabilities—notably, the answer that was least common among women without a disability—was that they had no way to get to the clinic.
In other words, say the mammogram machine itself is accessible. That doesn’t mean much if you can't get to the clinic that houses it.
Around the time Gauthier was trying to schedule a mammogram, a local branch of the Susan G. Komen Breast Cancer Foundation partnered with The University of Montana to test healthcare facilities for their overall accessibility. The project encompassed 60 different sites, whose staffs were asked about how their clinics could be made more accessible. The project culminated in a program meant to educate clinic personnel on the needs of disabled people, including a guide to gauging accessibility.
“Concerns about inaccessible ramps, doors, rest rooms, dressing rooms, examination rooms and equipment are frequently reported barriers,” said Thierry, who was not involved with the project. (I was unable to reach Komen, UMontana, and the University of New Mexico School of Medicine’s Center on Development and Disability, another institution involved with the accessibility project, for comment.) “In addition,” Thierry said, “difficulty with how a woman is positioned during a mammogram and lack of personal assistance, such as filling out forms, dressing, balancing or standing, may also impact screening behaviors.”
Physical structures and access are only one piece of the problem, Gauthier adds—it’s also a matter of overall treatment and stigma around disability. When she interacts with healthcare providers, she says employees often are some combination of flustered, worried, and annoyed. “They don’t want to talk to you because they think they’re going to catch something,” Gauthier told me. “They don’t like the way we act, they don’t like to see us, they think we’re disgusting.”
Why would anybody want to go through the trouble of accessing a screening when they suspect they might be treated badly? Gauthier wonders.
For those who do want to try and get screened for breast cancer, Thierry points to the CDC’s guide to mammograms. The guide lists the kinds of questions one might want to ask their healthcare provider before showing up for an appointment: “How long is the appointment and can I have more time if I need it?” for example, and, “How do I prepare if I use a wheelchair or a scooter?” Thierry notes that having to do all this additional preparation in the first place is probably a big reason more people with disabilities don’t get mammograms. Some people “spend so much time addressing their disability-related health issues that they don’t have the time or energy to address preventive care,” she said.
Breast cancer, for its part, doesn’t discriminate. Studies show that disabled people are just as likely as non-disabled people to get cancer. But women with disabilities are more likely to die from breast cancer, and are less likely to undergo standard therapy when diagnosed.
Gauthier, meanwhile, says she’ll continue pushing to make clinics more accessible in Canada. She admits that it can get exhausting.
“It’s so very, very hard,” she said. “We’re always upset, from the morning to the minute we go to bed. I’ve been doing that for 10 years now, and of course I’ll do it until the end. But sometimes I’m fed up and tired.”
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