I was recently on a panel for the Canadian Association for Health Services Policy and Research. The topic was an important one: Exploring Inequities and System Gaps Exposed by COVID-19. I joined a prestigious group consisting of Dr. James Makokis, Dr. Beverly Essue and Dr. Naheed Dosani and were were moderated by Dr. Diane Finegood. You will note I was the only non-Dr on the panel, so I decided just to be me and I spoke as plainly as I could.
To illustrate the health inequity that has been experienced during COVID for people like my son Aaron, who has Down syndrome, I told a story contrasting what we had to do to get Aaron his first COVID vaccine vs what my husband Mike had to do. Here is a version of the tale that I told.
First up, Mike:
When his age came up, he went online. Booked at an appointment at the pharmacy. Four days later got his shot. The End.
We started advocating for people with Down syndrome and other developmental disabilities to be prioritized on the government vaccine priority list in mid-January. At that time, it was just age based. We knew people with Down syndrome were at higher risk for being hospitalized and dying from COVID from a UK study. We still have no Canadian studies, because Canada doesn't collect or report disability-based data.
My husband and I began a national advocacy campaign – called Ready for My Shot - to lobby to get Aaron's community vaccinated. (For those who may say that us privileged people are only advocating for our own son, I will say, yes, Aaron benefited from our campaign, but so did many other people with developmental disabilities too).
This entailed: building a website, Tweeting, having Zoom calls across the country, collecting selfies from self-advocates, sharing stories. Aaron appeared on CBC, Global and CTV. He and I wrote an op-ed to the Tyee. My husband Mike did around a dozen other stories for the campaign – for TV, radio, print. We signed petitions. Supported other advocates in other provinces. Tweeted some more. Wrote letters to the various ministers and our MLA. Wrote to Dr. Bonnie Henry, our Public Health Officer (never heard back). Asked Aaron’s government social workers to help us advocate (they never did). Lodged a human rights complaint. And finally, Aaron did the Town Hall segment for CBC that is posted above.
When the government finally added people with Down syndrome and other developmental disabilities to the list in March, it came with a bunch of eligibility requirements. First people Aaron's age had to be associated with an obscure government program to be eligible. Then after we raised it the media and they dropped that requirement. But we still needed a letter from the Public Health Officer to say Aaron had Down syndrome in order to get his shot. We waited for the letter. It was supposed to be mailed by April 15, 2021. I've checked the mail every single day. The letter never came.
Aaron did end up finally getting his first COVID vaccine shot, but only because my husband, who accompanied him to the clinic had to point out to the supervisor that despite the fact Aaron didn't have a letter from Dr. Bonnie Henry, he still was at high-risk for COVID because he has Down syndrome.
My question to the audience was this:
Why is the burden always on disabled people to prove they are disabled? Did my husband have to jump through these hoops? No. He went on a website, booked an appointment and got his shot.
Aaron has experienced health inequities his entire life - dare I say, health inequities begin for people with Down syndrome even before they are even born.
Aaron's two questions for the Health Minister on the Town Hall video, told in his own words, sum up his experience of health inequities - and not just during COVID:
Why don't you listen to disabled people?
Do you care about disabled people or not?
The Health Minister did not give Aaron a satisfactory answer. We are still waiting. It seems that the health inequities for Aaron will never end.