Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the sixteenth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.
Here is this week’s question:
What do you think are the biggest challenges that your family members face in regard to disability?
Last time there was a question about my family, I planned ahead and asked my sisters to write for me. This week I do not have the luxury of having family members answer the question themselves. Maybe they’ll jump in and add a comment (hint, hint).
I don’t want to speak for others, as I dislike it when others speak for me. If I had to guess as to the challenges my family members face in regard to disability, I would create this list:
- My father is annoyed and at times depressed by the changes in his physical abilities due to age, congestive heart failure and diabetes. Last year at this time he was very sick with pneumonia and we were very concerned about his ability to bounce back. He is doing much better, still living at home with my mother, and is excited about his vegetable garden. When I visited two weeks ago, he told me he would not be able to stay at home independently if anything were to happen to Mom. He mentioned a local nursing home, then admitted he really doesn’t want to have to live there if he doesn’t have to. I promised we would do our best to help him and Mom remain at home for as long as possible. Lucky for them, I know a thing or two about home care.
- Up until she broke her leg two years ago, my mother walked two miles every day. Over tea last week, she told me she doesn’t walk anymore because she worries about falling. Mom doesn’t sit for very long, and has always said she feels better when she is active. She has a more active social life than I do, although she did admit she is cutting back a bit because she doesn’t feel she “needs to do it all anymore.” Sisters – that is an exact quote. I looked at the calendar in the kitchen, and it didn’t look all that empty.
- I’m certain my parents and sisters worry about me and my ability to continue to manage my independent life. They know better than to tell me about it. I will just tell them not to waste energy on it and let them know when I need them to worry.
The challenges of a body which doesn’t perform as it once did are not new to me because I have been adapting to changing physical abilities all my life. I know I am not the shell which holds me. I am not the muscles which refuse to move no matter how many times I try to send the message down the nerve. I am not the hips which will only straighten after hours of stretching. I am more than the chair with wheels I use to access the world.
Watching my loved ones adjust to their changing bodies, learn their new normal, can be frustrating. I imagine my family may feel similar frustrations when they learn I can no longer perform a task I once did or watch my new method of completing an activity.
My family is not unique in the challenges we face related to aging parents. Like other families, there are other disability concerns – arthritis, cancer, mental illness and more. Approximately twenty percent of the population self-identify as having a disability, so it’s very likely you are facing challenges related to disability in your family as well. If you aren’t now, you will be at some point.
As a society, we are living longer. The prevalence of disability increases with age. I already belong to the minority group everyone will join if they live long enough. Hopefully, as more people experience disability first-hand, we will all gain a deeper understanding of what it means to be disabled and how we can remain ourselves even in different shells.