If you are not disabled, it is difficult to know what a person with disability experiences. This is further complicated by the wide variety of disabilities and the even wider variety represented by the degree of disability for each individual so affected.
Let me first try to define disability, another rather large task.
The definition put forth by the Free Merriam-Webster Dictionary is twofold, but to reduce confusion I am only going to present one: “a physical or mental condition that limits a person’s movements, senses, or activities.”
I recently ran across a document called “The Inevitables of Life with CMT.”
It was written by Angela Graham who has CMT. She moderates a support group on Facebook about what it is like to have CMT.
I have CMT, or Charcot-Marie-Tooth disorder, a neuromuscular disorder in the muscular dystrophy family.
I found many of the “inevitables” to be true for me. The others are circumstances I can see many people experiencing.
I am going to go through those I have seen in my life.
1. You will fall many times.
While I fall much less often than I used to, it still happens. As the disorder progressed, I found falling to almost become normal. With a walker and a medical scooter, falling is less frequent.
But there is another kind of falling that occurs with disability. That is falling into despair.
2. You will be asked if you’ve been drinking. At least once.
In high school, while I was never asked directly if I had been drinking, an incident upset my younger brother.
He was in the locker room after football practice and heard some of the other players talking about the fact I was drunk most every day during school.
3. You will have many surgeries,or at least many people who want to perform surgery on you.
I have had many surgeries, but none I felt was unnecessary. The two major surgeries I had was performed by a very skilled surgeon who waited to operate until I was nearly to the point of giving up walking because of pain.
4. You will develop odd ways of doing things.
When I started first grade in a school with steep staircases, I selectively used my right leg to move me up each step. It drove some of the teachers to distraction.
Currently, I use a tool that hooks in to the door latch of my van.
Together with the steering wheel, I then lift myself part way on to the seat.
Different but effective.
5. You will feel grief randomly and repeatedly.
Grief is a part of chronic illness of all types. Every time something doesn’t work as well as it did or stops working entirely, I have a period of grieving.
6. Some of your family, friends and doctors will not believe you or understand you.
Many of my extended family have for years asked about how my feet are doing. And it seemed no matter how often I explained the disorder was more than about my severe high arches, this was where they focused their attention. At least they are concerned.
7. You will feel like giving up, before you find your strength.
This is so true for me. And I believe it is like grief, the urge to just stop trying will rear its ugly head repeatedly, especially when I have a severe worsening of symptoms.
8. You will doubt your abilities before you find your talents.
I think doubt haunts many people, even those without disabilities. When your body routinely fails you, doubt is a frequent companion.
9. You will question your worth, before you find your purpose.
When friends or family have to change an activity in order to include you, it can be easy to question your own worth. However, I found plenty of ways to join my son on his scout trips, and I appreciate being loved enough that others are willing to forego something to include me.
10. You will lose friends but find others who truly understand.
I have been fortunate to not have felt this kind of loss. And there are people in my life who only understand what I experience of life in small ways. I am more than my disability, and these friends are still important in my life as they share in other ways with me.
I hope you have gained some perspective on what it is like to live with a disability.
My disability affects every part of me and yet is only a part of me.
I also hope you see that people with disabilities are not a homogenous group.
We experience many of the same things; yet, we don’t always experience everything others with disabilities experience.
Like everyone else, we follow most of the laws of psychology, biology, genetics and so on, and then we each throw a wrench into the works to make us the unique people we all become.
Sounds like most of the people in the world, doesn’t it?
Jim Matthews is a Greenfield resident.
