This post was written by current student Paul Benson.
The title of this blog might surprise you. You may think to yourself “disabled people have a much more limited life than the non-disabled.” You might think that I mean “Living the best life possible despite having a disability.” Not at all!
I am going to suggest that life with a disability can be BETTER than a non-disabled life. If you have trouble believing that, just read on.
My reflections on this topic are inspired by my current work in DST 507 – Disability Justice and the Good Human Life – with my professor Dr. Cameron Crawford, and a lively and engaged group of classmates.
To set the context, I have late stage Multiple Sclerosis and live as a long-term patient in my local hospital. And my life is abundantly rich and fulfilling. For example, even though I use wheelchair and am reliant on a ventilator, I am joining friends this Friday to see the ballet “Sleeping Beauty” at the Burlington Performing Arts Centre. I will be taking a support person with me – a Registered Practical Nurse trained in ventilator care – and meeting up with three close friends who I enjoy spending time with.
With appropriate supports, I can travel out to activities with friends and family. I am cared for by an experienced and capable team of professionals – nurses, my doctor, a physiotherapist, a team of respiratory therapists, a speech therapist, a social worker, and many others. I have a “staff” almost as big as Martha Stewart’s!
And I have time – time to socialize, time to do schoolwork, time to value just being with people. I don’t have to clean house, I don’t have to go out to work (my work is here at my computer). Are you beginning to envy me? Even just a little?
My disability allows me to have the life that I choose. I am autonomous – I make all my own decisions, set myself life goals, and work towards them. The only difference is that I lead a totally interdependent life. Others act as my “arms and legs.” With their help, there is very little that I can‘t do.
But, am I unusual? An anomaly within the disabled community? As I discovered through my readings in DST 507, my experience of life with a disability may be quite common. Disabled people s often say that they could not imagine a life without their condition. It just would not be as good, it would not be them.
Stephen Hawking celebrated the fact that having a disability gave him the life that he loved. Michel Petrucciani – arguably one of the finest jazz pianists in the world – had Osteogenesis Imperfecta (the “brittle bone” disease). He said that his disease “saved him from being ordinary.” For an example of his playing and composition skills, watch him perform “Cantabile”. He is obviously delighted to be doing something he loved.
There is an influential bioethicist and intellectual thinker – Dr. Peter Singer – at Princeton University, who insists that a year in the life of a quadriplegic is only worth six months of “normal” life. According to most disabled persons (including me), this is baloney. Yet he continues to push this philosophy as the basis for restricting healthcare to disabled persons and advocating infanticide for certain disabled babies. In September 2015, in an article in the Toronto Star, Peter Kavanagh wrote “If you are an animal, Peter Singer might be the closest thing you have to Moses. If you are a severely disabled human baby — or a disability activist — he’s more akin to the Angel of Death.”
In 2001, Dr. Singer met and debated with Harriet McBryde Johnson – a Disability Rights lawyer who herself had a disability. Although he talked to her as a valued colleague, he could not believe her when she said that she led a very good life. I would characterize his reaction as “denial.” Her ideas conflicted with his, so he could not accept them.
As part of DST 507, I read a wonderful article by Tom Koch “The Difference that Difference Makes.” This article is available through the Ryerson University library. It points out that many people facing increasing levels of disability find that life actually becomes better. Their increasing disability means that they engage more with their caregivers, their family, and their community. This is the power of interdependence. It happened for me – and I love it!
So, next time you encounter someone with a visible or invisible disability, rather than thinking “Oh that poor person. How they must be suffering,” take time to connect with them. Find out how they view the life they are leading You may discover that they are enjoying a fulfilling life that you would be happy to share. Food for thought!