‘I Want the Vaccine So I Can Live’

Aaron Waddingham, a young actor and self-advocate with Down syndrome, shared his thoughts on life in a pandemic with Tyee readers in November.

The young Burnaby activist is working to promote the national Ready for My Shot campaign to ensure people with Down syndrome and other developmental disabilities, who are at greater risk from COVID-19, are prioritized for vaccination.

Below, Aaron and his mother Sue Robins share their thoughts on B.C.’s current vaccination plan.

Aaron Waddingham: The COVID vaccine is a part of people in the whole world. Disabled people will die without the vaccine. We must tell the governments that people need the vaccine.

Sue Robins: No Canadian province has made people with Down syndrome or other developmental disabilities a priority for the COVID vaccine. Only the Yukon and the Northwest Territories are currently prioritizing vaccinations for all disabled people.

Other countries have also surpassed Canadian provinces in recognizing the COVID risk for people with developmental disabilities. The U.K. is currently vaccinating adults with learning disabilities, and India began vaccinating people with intellectual disabilities on March 1.

In the United States, the Centers for Disease Control added Down syndrome to its list of high-risk conditions in late December.

But Canada’s National Advisory Committee on Immunization, which makes recommendations on the use of vaccines, does not specifically name Down syndrome or people with developmental disabilities in its guidance. And it has sparse mention for any type of disability. Strikingly, the committee’s guidance on vaccination prioritization, which is over 9,000 words long, only uses the word disability three times.

Aaron: I would get super sick if I got COVID. Extraordinarily sick, and I would have to go to the hospital. I hope I am too young to die from it. Heart and lung problems are part of the Down syndrome world. I have had pneumonia twice, once when I was six and again when I was 12-years-old. I had to be in the hospital.

Sue: There is a misconception that Down syndrome is only an intellectual disability. The truth is that there are a host of medical concerns that come along with Down syndrome, including heart conditions and respiratory issues.

A recent study estimated a four-fold increased risk of hospitalization and a 10-fold increased risk for death for people with Down syndrome who contract COVID-19.

Shockingly, Canada does not even collect data about how COVID-19 affects people like Aaron. If there is no data collection, there is no reporting. If there is no reporting, there is no research. If there is no research, there is no evidence.

How many people in group homes or supported living settings have died of COVID? How many people with Down syndrome have gotten COVID? We don’t know because our government and their agencies won’t report the specifics of the co-morbidities of those who got COVID and who died from it.

Having this information is crucial to making good vaccine priority decisions.

Aaron: It has been a year since COVID began. I can’t do events like concerts or activities like going to the car show. I miss all my friends. My parents are fun, but they are a little bit annoying. I had started to take the bus alone before the crisis started in the middle of nowhere. I miss seeing my girlfriend so much. I want to take her for an expensive dinner where I will pay.

Sue: All of us have experienced great loss during this pandemic. People with developmental disabilities have been hit especially hard. They may live in group homes that have been struck by COVID-19. Or, if they are in independent living settings, they need to stay home in order to avoid contracting it. Many people work in essential worker positions, like in retail or restaurants, and had to quit their jobs to avoid getting sick. It may be challenging to explain to people with intellectual disabilities why they have to stay at home, leave their jobs and not see their friends and family.

“As a result of public health measures throughout the COVID-19 pandemic, people with developmental disabilities have experienced greater isolation and restrictions than other groups, which continues to have detrimental impacts on their health,” confirms the Health Care Access Research and Developmental Disabilities program at the Centre for Addiction and Mental Health.

It’s no surprise to read in an Italian psychiatry journal that COVID-related “social isolation measures seemed to exacerbate depressive symptoms and some functional impairment in a population of adults with Down syndrome.”

Aaron: I am angry about COVID. I’m mad at the government. They are not actually protecting human beings in the world. Our government doesn’t even listen to the World Health Organization. We should do lockdown in the entire Canada to be like New Zealand and have the vaccine.

Sue: British Columbia health officials like Dr. Bonnie Henry and Dr. Reka Gustafson have repeatedly said that British Columbians must “live with” or “co-exist with” COVID-19. Unlike New Zealand or Australia, Canada is not pursuing a COVID-zero strategy. Rather, this pandemic has been drawn out for a year, and Canadians who are high-risk for COVID have been living with the fear of contracting it every single day.

Aaron: If older people with Down syndrome got the vaccine, they would feel better because they wouldn’t get COVID. Older people might have bad health problems. Governments should be treating disabled people nicely.

Sue: Phase 2 of British Columbia’s vaccine rollout is mostly age-based — the older you are, the sooner you will get your shot. The problem with that is younger adults who are high-risk are not on track to get their vaccines until Phase 3, alongside the rest of the general population. There is mention of people with “very significant developmental disabilities” in Phase 3, but no details about what disabilities they are referring to.

B.C. Health Minister Adrian Dix talked about vaccine priority Tuesday. “The best way to do this in a general sense is to go age-by-age, because people are more vulnerable at age 80 than they are at 60… it’s an efficient way to deliver a system to millions of people.”

But age-by-age vaccine rollout is simply discriminatory against younger adults who are at high risk for COVID.

The average lifespan of a person born today with Down syndrome is 60 years. They experience medical frailty earlier in life than people without Down syndrome, and so age-based vaccination rollouts automatically exclude them from needed protection. Someone with Down syndrome who is 55 is, statistically, nearing the end of their life. With today’s current vaccine priorities, they would get their vaccine a full four months after an 80-year-old person without Down syndrome.

Efficiency should not be the only consideration in a vaccine rollout in a deadly global pandemic. Ethical considerations should be at the forefront too.

Aaron: I want the vaccine so I can live. I’m not scared of getting the shot. Vaccines are always great. My sister Ella is a pediatric nurse. She cares for and is kind to all the young kids. She got the shots. Vaccines are great for my sister’s health. I was worried she might get COVID. But now Ella is okay.

Disabled people need the vaccine. My parents keep me safe, but the government does not. Down syndrome people are human beings! We have to treat disabled people well. What is the government for, anyhow?

Sue: B.C.’s current NDP government has a history of leaving disabled people behind. This became clear in December when it announced it would cut the $300-a-month COVID support for people on disability assistance to $150 a month. People with disabilities in B.C. receive $1,183.42 in benefits, for rent, food and all other expenses. If you need the evidence that our government doesn’t value disabled people, this is it.

Aaron: We have to speed up this vaccine process right now, so it doesn’t take until 2027. We should shut down this pandemic. This is like living in World War III.

Getting the vaccine would cheer people up. After I get the vaccine, I will have freedom! I want to kiss my girlfriend for the first time. I want to go back to school and hang out. I miss it. If I got the shot, I would be happy and have joy. I have been lonely.

Sue: Lumping adults with developmental disabilities in Phase 3 with the general population just isn’t good enough. Aaron’s dad, who is a 57-year-old with no co-morbidities, is slated to get his first COVID vaccine in July. If Down syndrome is not specifically identified on the vaccine priority list, high-risk Aaron won’t have his first shot until the very last slot in September.

It is our government’s responsibility to keep all its citizens safe, not just some of them. The lives of people with Down syndrome and other developmental disabilities have value beyond their ability to contribute to the economy. If only we took more time to listen to people like Aaron, who tell us that he needs the COVID vaccine in order to live again.