‘Common Sense ain’t very common.’ I’m convinced whoever said that either had a disability or was close to someone who had a one, because that has been my experience in spades. For anyone with a disability I’m stating the obvious, and I’m sorry for that; but for people without disabilities this can be something completely new. It is more to latter that this article is written.
What follows is a list, in no real order, of things that seem so obvious to me that they should be… well common sense. But I have had staff, family and the experts (more on this word latter) stumble over more than one of them causing frustration and hardship, for both themselves and me. It is my hope that by listing and talking briefly about each of them I can either help spread my common sense to more of the enabled community or that a disabled person could use my words as a starting point to help explain an issue they’re having a problem with to someone in their support network.
One final note on the term ‘expert’. When I use that term, I mean am all the various talking heads that are ‘expert’ in a single aspect of my care and needs. This would include (but not limited to) doctors, physiotherapist, social workers etc. that have entered my life told me what to do, how to do it, and then left. While some are good people who care for me and others with disabilities, I personally found that most are just narrow focused, bureaucrats who are more interested in making sure that they can’t be tagged with a wrong decision than they are actually trying to help someone.
#1 I only have a physical disability
I have cerebral palsy. This is my only medical diagnosis; CP does not affect my cognitive functions yet I am often treated by other like it does. This is something that has always frustrated me and has caused me to wonder why that is the case. After a lot of thought, I’ve come up with two causes for people (staff, experts and friends and family) to treating me like I’m intellectually challenged:
First, there is where I get my support money. I’m a bit of an odd duck in BC, most people with CP get their support funding from the Ministry of Health. Because of ministry restructuring back in the 1990s I get my funding through the ministry who is responsible for funding people with development disabilities. So the service providers who sought my contract all just assumed that I was also intellectual disability; as did many of the staff, who came to work with me. It wasn’t necessarily their fault, they didn’t know me and their training and expectation were of working with someone who was ‘special’ in that way. Many got the fact that I was fine upstairs (one of the funniest incidences came from a future manager who when he finally got it turned to me and said as if it was new to me as well ‘Cathy you’re not mentally handicapped!’). But many of my staff never got it and they went on to cut me out of many decisions of my own life. I then had to fight that much harder to gets those choices back under my control.
Second there is the fact that I am in a wheelchair and therefore everyone who stands talks down to me: Literally. And when this happen some do it figuratively as well. Those who figuratively talk down to me become very patronizing and treat me as if I were a child that must be taught her place, not an adult that deserves to be reason with. This is not just me by the way I’ve seen the same thing done to others in a wheelchair.
This is one of the reasons why when I look for staff one of the things I look for is ‘do they sit or squat down next to me when we talk’; and why I try to encourage such behavior from family and friends.