Inside you will find what it is like to live with a disability and how I have grown to learn what disability means to me.
First of all, what is a disability?
The Canadian Government defines a disability qualifying as any severe and prolonged condition that inhibits a person from performing normal and routine daily activities. This definition is broad allowing for qualification of nearly endless number of conditions. (http://canadiandisabilitybenefits.ca/types-of-disabilities/).
Okay that’s enough definitions, we are not here for an english lesson. What I define disability as does align with some of what the definition above says; however there is much more to it. Disability is the thing that gets in my way and stops me from being able to accomplish what I think I am capable of. It holds me back, knocks me down (like seriously sometimes literally, it KNOCKS ME DOWN). Having a disability is my nemesis, my frenemy. The sidekick that I didn’t ask for and never goes away.
The Blue Pass
To me I did not feel I had a disability until Multiple Sclerosis started to really interfere with my life. I wasn’t even 30 and I had a severe relapse that put me off work for over a year. I needed a cane to walk and my right leg and hand were not doing what my brain was telling it to do. Oh and did I mention I’m right handed. Then I got one of those blue accessible passes. It’s not like I wasn’t feeling like I was 100 years old already or anything. But I can tell you that the pass that hangs on the rear view mirror of my car didn’t help me psychologically as I had only really seen my grandparents or their friends use one, and I definitely was not in their category I thought, or was I?
I learned that the blue pass was a saviour for my independence as I could still drive places I needed to go and participate in the activities I wished. This also helped me in accepting that I had a disability and I could make it what I wanted .
Since that point when I first felt that I had a disability I have grown so much as a person and accepted MS into my life and therefore the disability that comes along with it. I have used what I have learned to meet other people in similar situations as I am in and also assist others with accepting their disabilities. I am the provincial representative in Nova Scotia for the first ever MS Society Young Adult Committee for Canada. Co-founder and facilitator for the first ever MS Young Adult Support Group in the area where I live.
I have found in my own acceptance of my disability, a certain amount of growth and courage that I have tried to use to advocate for accessibility, not just for people with MS, but for people living with disability in general. In doing so, I have managed to draw attention from the media, such that I was interviewed on several occasions ( can you say nerves lol). Given the vast experience and knowledge that I have acquired, my advice and opinions have been sought by many other MS society members, leaders, and even the local MP Darren Fisher.
Now back to that blue-pass, I still use it even to this day. Although I have no current physical disabilities (at this moment), I do have very debilitating fatigue, so having the blue-pass is a lifesaver. I can get out to the store and can park close enough, enabling me to have enough energy to actually go in and shop for at least a little while. I’m always ready for someone to say something to me, to the tune of “ …you don’t look disabled”. Like what does disabled even look like?
A lot of people are of the belief that you have to be able to see it for the disability to exist. Invisible symptoms are difficult for outsiders to understand.
Our Limited Perspective
Our perspective is often limited by our own experience. I say often because there are people who choose to assume the emotional perspective of another person. This ability I believe is often informed by circumstances in the person’s life that has helped diversify their perspective. We can’t only know that which we have experienced. In saying all of this, we must strive outside of our understanding and our own identity to bridge the gap between what we know and that which someone else knows and in doing so understand someone’s else’s reality. If we do so we will begin to cultivate a more cohesive reality.
With the often invisible symptoms of MS it is difficult to make people understand when they cannot see that something is wrong. This often leads to lots of explanations and apologizing for something you can do nothing about, at least it does for me. I find it’s best to try not to be too hard on myself for what I cannot do and live life the best way I can. For myself and not anyone else.