People with disabilities have often grown up hearing the words, “You can’t”, “You will never…” and “You should just…”. The assumption is made that the word disability really means inability.
That assumption is full of danger. It allows the ‘abled’ world an easy out. Why should they work hard to support people with disabilities, or make the world accessible, if those people just “can’t”. Why should they even try? By taking such an attitude, there is an unbelievable loss of human potential, not to mention a loss of quality of life and human rights.
The “they will never” attitude provided the moral excuse that allowed so many thousands of human souls to be locked away in facilities, such as Pennhurst. It was not so much a failure to do right by people, as an active commission of harm. This was the attitude that allowed doctors to tell parents, “she will never….just send her away”. This attitude ripped families apart, and denied parents and their children the opportunity to see just how much they were capable of.
I was recently told the story of an individual who had been at Pennhurst for many years. When their family was contacted to say that their (now grown) son would be returning home, the mother said, “But I don’t have a son.” It turned out that, at her son’s birth, the doctor had advised her husband to say that the baby had died. I cannot imagine the suffering that this entire family endured.
I hear about ‘the attitude’ from friends with disabilities who were told “You will never make it in college”, or, “You will never be able to hold a job”. These friends, both women with Masters Degrees, have spent their lives showing the world just how capable they are. The world is a richer place because of their contributions.
But what of those who cannot speak? Or who cannot express themselves adequately to meet their own needs? What do we continue to presume about their abilities?
Pennhurst is closed, and many people with intellectual disabilities are able to remain at home with family, or live in the community with supports. Yes, this is progress, but the progress is limited if these people cannot communicate and are unable to direct the course of their own lives.
We live in an age when we have the tools to make sure that everyone has a voice. It is far cheaper than it was even a decade ago. So, why do so many remain voiceless? The reasons are complicated, but much is excused due to the presumption of incompetence.
It is easier. It is easier not to offer choices, and not to listen, if we presume that someone is not capable of independent expression. It is easier to set a rigid schedule, to leave the TV on, and stay glued to our phones, if the system presumes incompetence. This presumption provides both the excuse for our actions and a moral salve, allowing us not to think too deeply about our actions.
Layered on top of this, is a world that does not treat the act of care giving with the respect (and compensation) that it deserves.
It may sound like I am trying to place blame. Really, I am not. I am trying to imagine a way things could be made better. And it starts with the presumption of competence. Once we presume competence, we become motivated to find solutions that will allow for communication. Once we presume competence, it becomes worthwhile to to offer choices, and to listen if someone says “No”. It becomes worthwhile to model language, and to learn to be good communication partners.
Once we presume competence, it becomes worthwhile to take however much time it takes for our person to gain skills with their communication system, low or high tech. And to make that system available throughout the day.
Will everyone’s communication look the same? Of course not. And I will never be a Toni Morrison. Thank you for sticking with me this far.
Once we presume competence, it becomes imperative for us to think of communication as a human right. We might even begin to see how the system sometimes operates to further disable the individuals it is supposed to serve.
So, how do we change the system? I suppose the answer starts with, ‘one person at a time’. I hope that it ends with a place where we see everyone as human, and deserving of a voice.