I recently had the opportunity to review case studies about Down syndrome that are used to teach medical students.
My main response was: Jesus F*cking Christ, it is 2023. The language was overwhelmingly biased and not value-neutral. The grim overlay on the entire case studies was that Down syndrome was a ‘challenge.’ Not one word about the joy that comes along with ANY child, only creepily subversive phrasing about what a burden it must be to have a child with Down syndrome. And not one mention about how it is systems and society – including physicians - that contribute to burden or suffering…not the person with Down syndrome themselves.
The section on prenatal testing and screening was also devoid of information to ensure informed consent, which includes not having testing and screening. It was implied that parents who have a child with Down syndrome are more likely to get divorced, a myth that has been debunked with research.
This is all total bullshit. And not reflective of an authentic experience either having Down syndrome or loving someone with Down syndrome.
As a dear friend said, “If you are going to have a stereotype of Down syndrome, at least make sure it is an up-to-date stereotype of Down syndrome.”
Better yet, health professionals (and educators and those who work in human services, and bureaucrats and policy-makers and politicians – well, everybody) need to sit down and think about how they value – and don’t value – disabled people.
What experience have they had with disabled people?
Did they know anybody who was disabled growing up? Why or why not?
What is disability? Is it something to be fixed? Tolerated? Accepted? Celebrated as a part of the natural human fabric?
I have spoken to many groups of medical students. Bringing in folks with lived experience is hit and miss for most post-secondary institutions – sometimes it is done, but most time it is not. The lived experience is something that should be woven into all classes, all the time, at all universities. But it is woefully not.
My son Aaron, who has Down syndrome, has also spoken to medical students, starting at age 12. He's generously shared his tips in the visual above. Is it Aaron’s responsibility to educate medical students and stand up in front of a class to ask them to reflect on whether they think he’s a human being worthy of value? To justify his own existence?
(Also note that most universities do not pay guest speakers, which means Aaron is expected to do this work for free. On his fixed limited disability income).
The work of reflecting on one’s own values about people who are different than them should be continuously practiced by professionals. This should be the focus of medical and other professional education, not memorizing the Krebs Cycle.
Want to tackle ableism in health care? Talk about it openly. Include stories about the real-life experience of patients and families. Pay and honour speakers. Lean on the humanities to teach – share stories, look at art, watch plays, find videos, view movies. Finally stories about disability are seeing the light of day. There’s no excuse not to seek them out. (Unless you are comfortable with your own stereotypes).
Here are a few resources to start. But it isn’t Aaron’s job to convince you to stop being dated, ableist and biased against people with Down syndrome.
It is yours.
Am I Ableist? Sign up to receive this e-book, written by Abbey MacLellan, Marihan Farid and Zachary Ford, students at Dalhousie University.
About Dr. Darwish, my article in CMAJ
HUSH plays – plays about health care
Chicken the Short Film – Aaron is the co-star – the award-winning movie about an authentic brother and sister relationship
I’m not your inspiration TED talk by Stella Young
Visual Art by Sevy Marie
Ableism is a health hazard article – excellent piece by CPSO
The Parent, the child with Down syndrome and the NHS – JMIRS article by Naomi Shiner
Doctors still don’t know how to talk about Down syndrome – in Time magazine by Amy Julia Becker