Guest post by Denise DiNoto: “How do you ‘manage’ life as a woman with a disability?”

This is a guest blog post by Denise DiNoto for the blog AbleBodies originally published on October 1, 2014. Below are a few excerpts:

“How do you ‘manage’ life as a woman with a disability?”  This question is asked of me at least three times each month.  My initial response is typically, “What alternative do I have?”  I mean – really?  Who else has to answer this type of question?  I have come to learn that the question’s source really has nothing to do with me and is often more about the person asking it.  I think the real thought in that person’s head may be:  “I see what you are doing, it terrifies me, and I don’t know if I would have the ability to do it.  If I figured it out, I don’t know if I could accomplish what you do with as much happiness/optimism/success.”  Again I say – really?  I manage because that is my choice.

All of us, no matter our physical ability, are given the opportunity to make choices.  However, as a person who requires assistance from others in order to live independently, there is a critical difference in my choices.   The distinction, for me and others who rely on caregivers or assistants for help with care, is we always make choices or consciously think about things most people never consider.  The able-bodied have the luxury of a life without these choices, a gift taken for granted; and, unless pressed, would never consider these common happenings real choices or decisions.

As an example, each and every day, from the minute I get out of bed, I choose when and how much liquid to consume so I can get through the entire day without having to use a bathroom.  Wheelchair users often refer to this as “pee math.”  Why does this matter?  This one simple choice influences so much of my daily activity and my ability to “manage.”  This choice means I do not drink during the day before 2:00 PM, other than my morning coffee, which I gulp immediately upon rising each day.  It also means the toilet is one of my first stops when I get home from work.  If my personal assistant is late or calls out, finding a replacement worker becomes the priority activity no matter what.

My entire life is scheduled around when the pee math will become critical.  Those who are able to use a toilet at any location, at any time, without needing another person to make it happen, never worry about whether the choice to have a second mug of afternoon tea was a mistake.  Those who are able to urinate at will never worry about whether the clothes they are wearing could be sacrificed and cut off their body in an emergency if their personal assistant doesn’t show up and they NEED to get on a toilet NOW!  I have indeed taken scissors to my pants in order to get to a toilet before the pee math went beyond critical.

This choice to dehydrate myself daily – a choice many of my friends, family, and healthcare providers do not approve of – works for me.  Rather than spending my lunch break in the bathroom, using a toilet that is difficult for me to access, I get to eat.  That is my choice.  And it really does not matter to me if others do not understand or agree with it.

For the entire blog post: http://ablebodies.typepad.com/blog/2014/10/guest-blogger-denise-dinoto.html

Denise DiNoto’s blog: http://deescribesblog.wordpress.com

Denise on Twitter: @mwny01