Redefining Disability Challenge – Question 33

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty third 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:

How has your life changed as a result of your diagnosis?

I have had my diagnosis since birth, so I don’t have a concrete “before/after diagnosis” answer to this question. Disability has always just been one component of my life.

Think about something you were born with – something you cannot change or control. Maybe you are left-handed. How has your life changed as a result of your handedness? Do you ever stop to think about that?

Maybe you were born farsighted and are unable to see close objects clearly without corrective lenses. How has that changed your life?

Maybe, like me, you are the youngest child in a family of six girls. How has that lifelong experience shaped your existence?

I rarely stop to consider how my life is “different” or changed due to my diagnosis because it is just the way life IS. I don’t know any other way.

Granted, when I was younger I was able to walk short distances. So, I can relate to those who lose function or become disabled. I can understand the sense of loss and the anger as you adapt to a new reality which does not include abilities you had yesterday, last week or last year. My degenerative neuromusclar disease grants me that learning opportunity on a regular basis. Let’s call it a form of continuing education.

This is not to say disability does not impact my daily life. Of course it does. Here are some examples of how my life is different from some other women my age because of my disability:

1. When I go on a date with a man, it is safe to assume he will ask me if I am able to have sex.  Usually this question happens on the first date. If a man asks me this question on the first date, chances are pretty good my answer will be, “Yes – but not with you.”

2. I remain employed at a job which pays me less than I am capable of earning so I can receive the home care I require to live independently in the community. This forced poverty is the result of antiquated laws related to disability and Medicaid, the publicly funded program which pays for home care. For a full explanation of this, read this post from earlier in this challenge.

3. I own a modified minivan so I can transport my power wheelchair. If I did not require an accessible vehicle, I would own a cute, red, energy-efficient car.

4. I make choices each and every day which the nondisabled never consider.  I make decisions about transportation based on disability. When I go to conferences and conventions, I select where to sit based on wheelchair access and table leg placement. I use a complex system of “pee math” to regulate how much fluid intake I consume throughout the day so as to avoid needing to use a restroom at a time when I do not have a Personal Assistant scheduled. When walking down the street with friends, I am constantly scouting the sidewalk ahead for potential obstacles. I plan my food preparation to occur when certain Personal Assistants are scheduled because I know they have the skills required to complete the task without constant supervision.

5. Precious little in my life is spontaneous since I rely on other people to complete basic tasks like getting out of bed, showering, going to the bathroom and getting dressed.

6. My unobligated time each week – all 25 hours of it – is a valuable commodity and I do not squander it on anything which does not add value to my life.

I am not complaining about any of this. I have a blessed, rich and purposeful life. I am grateful for the disability which has afforded me so many opportunities I otherwise would have missed.

Besides, if I didn’t have my disability I’d probably have to take the stairs like all those other nondisabled folks who aren’t lazy like me 😉

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