Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirtieth 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:
Do you see disability as more of an asset or a drawback in your daily life?
Yes. Oh – wait. That wasn’t a yes/no question.
Here’s the dilemma for me in tackling this question. Disability is complex and can’t just be categorized as an asset or drawback. It is both, and to navigate life successfully I have learned when to play off both aspects. Since this question specifically asks about my daily life and not life in general, I will do my best to answer it this way.
There are definitely daily disability perks in my life. The one which is most common in my daily life is parking. In most situations, I can assume there will be accessible parking when I arrive at a public location. Whether or not it complies with code is debatable, but usually there is parking. The parking spaces may be taken by other vehicles, but the spaces exist throughout the communities where I live and work.
My disability requires me to rely on Personal Assistants (PAs) in order to function. I have “staff” to complete many of the tasks and errands nondisabled people complete on a daily basis. There are perks to having staff. I have not had to go grocery shopping in seven years. Two weeks ago I went to the grocery store with my sister Crinnie to get food for the family luncheon which was held after my uncle’s funeral. It was the first time I had been inside a grocery store in two years – the last time I went shopping with Crinnie! What would you do if you didn’t have to waste time and energy on laundry, housekeeping and shopping? I use the time to write.
My disability also gives me an easy out when it comes to heavy lifting or other physical tasks at work. I never have to change the bottle on the office water cooler, because I am not strong enough to lift one. I never have to carry boxes when we move things other than those light enough to be placed on my lap by coworkers. Someone needs to help carry a bin of letters out to the mailbox? Not it!
But, there is another side to disability. My need for PAs requires me to sacrifice spontaneity. My life is scripted because I rely on others to complete tasks nondisabled people just complete without needing to consider the schedule of another or their ability to work. My day is a series of choices most nondisabled people never make. Each day I know the exact time I will get out of bed, eat meals, shower, and go to bed. I know each morning how many times I will use the toilet throughout the day and when. I know because none of these things happen without the help provided by my PAs.
Before I used PAs, I was a much more spontaneous person. I would accept last minute invitations to go out with friends on a Friday after work. I would meet friends at 9:00 PM on a summer night and get home from a night (morning?) of dancing at whatever time I wanted.
I can still go out with my friends, but only when these social events are planned in advance. The last time I was out after 9:00 PM was the April night I went to see a local production of Hamlet with my sister Sandy; and that was only possible because she agreed in advance to follow me home at 11:30 PM to help me go to the bathroom and get to bed. I have already begun to plan for personal assistance at the holidays even though we are only mid-way through September. And just today I learned the PA who works weekday mornings will need to miss at least a week of work because she is having surgery. Anyone available at 6:00 AM to help me get out of bed the last week of September? I’m looking!
I encounter physical barriers from time to time. However, the daily microagressions related to disability are more difficult for me to face with a calm attitude than actual physical obstacles. I wrote about microagressions in this post. These verbal expressions, often said by strangers as a way of opening a conversation or intended as a compliment, usually make me want to retort with a rude comment. Most times I refrain, but the growing list of potential come-backs makes it more difficult to keep that inside voice politely in my head.
Yes – I do “drive” my chair well. Of course I do. It’s how I access the world! Look at you, walking on your own two feet. You manage to do that all day without falling? Wow!
As with all things, there are positive and negative sides to the disability experience. Rather than classify life in such a dichotomy, I prefer to just accept the continued need for advocacy and education. Disability is a natural part of the human experience. Just like everything in life, there will always be things which make it easier to navigate and challenges which must be solved. Striking the balance is what should guide us.