In an op-ed in December 2020, Judith Sandys and Trish Spindel spoke directly to Canadians who, themselves, have never been forced into insulting, disrespectful and inevitably threatening living (or dying) conditions. They argue that the time has truly come for society to provide appropriate funding and “real choice” rather than what, currently, we broadly refer to as “long-term care (LTC).”
Given appropriate funding and the opportunity to influence the support it would provide, I suspect that very few of us would choose anything other than continuing to age in our own familiar surroundings, perhaps with others of our choice and certainly with the necessary supports to do so. Typically and obviously, that is known as “aging in place.” Surely, in a supposedly modern society of equal citizens such as that in which we believe we live, aging in place would be the absolutely unquestioned norm.
Were we elderly seniors to be asked what “we” would want in our personal futures, rather than being told what other (usually much younger) people have determined would be in our best interests, I am convinced that it would be neither better LTC homes as we know them nor even smaller group homes. The latter, so easily, as we surely know in our Community Living Association, can very quickly become institutions.
Now well into my 94th year, I cannot imagine being forced by circumstances beyond my control to live in close contact with people not of my choice. It is not that I dislike other people – although I do admit to having met some I would be quite happy never to meet again!
Similarly, there is an underlying threat faced by my son who has a severe intellectual disability and no capacity to speak or clearly direct his own future. Currently, he is safely supported by his local association in his rent-geared-to-income home shared with another person with similar needs for care. His support circle will certainly fight for that care to continue but my fundamental point is that it should never, ever, have to be a fight. Rather, surely, it is a human right!
Could any of us truly say we would welcome the almost inevitable fate of our own eventual institutionalization? I doubt it! And as long as we doubt it for ourselves, we are clearly obligated to doubt it for others. Yet we in society as a whole continue to allow that imposition on many elderly people and people with disabilities who have little or limited capacity to argue the contrary. We are even hearing suggestions that the now-closed Huronia Regional Centre, Ontario’s oldest institution for people with intellectual disabilities, could be converted into some form of LTC. How could that be? Do we never learn? Is that truly what we are looking for in our futures? I don’t think so.
Systemic consideration of these situations may be undertaken by “us” but it is never, ever about “us,” is it? Always, it is about “them”! It is only about those we see as needing support as, by reason of age or disability, they become less able to support themselves. Today, we may find it hard to see ourselves as “them.” Ultimately, almost inevitably, like it or not, “they” will include “us.”
We not only have to see ourselves, potentially, as “them.” We also need to convince government representatives to see themselves ultimately as “them” while we still have the capacity to do so.
Our future as equal citizens depends on this.