Sometimes you have to speak your truth regardless of the consequences. I think of all of the times in history and my own personal history when speaking one’s truth could have made a difference.
We are in times I have recently said “I couldn’t have imagined….”. But, upon reflection, those are the wrong words. I could have imagined this; I just didn’t want to. I was too afraid to.
What I am talking about is what I see happening as our care systems in this country come under stress. We may think that we have become a much more humane, compassionate and sophisticated society than that of our ancestors, but I am struggling to find evidence to support that claim when it comes to the plight of people with disabilities, especially intellectual disabilities.
The stories of elderly Canadians being abandoned to die in long term care facilities in our country are horrific. We are all outraged and loudly expressing our shock that this could happen. It should be no surprise and it is no mystery why this is happening. It is happening because, as a society we do not value the old enough to find a better way of supporting them. In my opinion, the same can be said for people with disabilities, especially intellectual disabilities, who live in congregated settings. We don’t care enough about them either. We know there are better ways to support them and we don’t act. So, they too are very much at an elevated risk for contracting COVID-19 because of their living arrangements. And, like many of our elders, they live there not by choice, but by default, because society doesn’t care enough to do better by them.
However, there is a major difference between what is happening in long-term care and what is happening in care facilities for people with disabilities. That is, we are hearing about the horrors occurring in the long-term care facilities. Dr. Tam and our senior politicians are all talking about the required changes the tragedy in long-term care has precipitated. This story is all over the news channels. The difference is that we aren’t hearing, or aren’t hearing enough, about what is happening in facilities caring for people with intellectual disabilities, and there are many such facilities. Sadly, many Canadians with an intellectual disability live in some form of congregate care. Most often they are supported by underpaid and undertrained staff that rotate between facilities or group homes. Most often these facilities do not fall within the purview of health, hence they do not have ready or easy access to scarce personal protective equipment. Most Canadians are unaware that the horrors of the long-term care facilities are the same horrors many people with intellectual disabilities are experiencing or at risk of experiencing.
So now, to my point. I ask you, why are we not hearing about what is happening for people with intellectual disabilities like we are hearing about other disproportionately affected groups, like seniors? Why? Is it because we cannot relate to someone with an intellectual disability and we cannot imagine their experience being our own as we can for seniors? Why is it that proposed triage protocols put people with disabilities at greater risk of being deprioritized when lifesaving equipment is scarce? Is it because our perception is that their lives are less worth living? I ask, who are we to tell someone their life is not worth living because they happen to require support to live that life or because we cannot imagine living their life. Who are we?
I cannot necessarily change what is happening around me. But I can speak out about it. I can bear witness to the discriminatory treatment of people with intellectual disabilities and other disabilities. It has been said that a measure of society is its treatment of its most vulnerable. I will speak out in support of measuring up.
Robin Acton is the President of CACL’s Board of Directors. She and her husband are parents to three adult children, the oldest of whom has an intellectual disability.