Living with a disability is an art. Doing it with aides around presents more opportunities for resourcefulness and creativity, but more importantly, for self-reflection.
There are always lines to be drawn about what can and should be done when you have a finite number of hours of help. Yet I’m very wary when people say things like “that’s just another thing for us to do” as a reason for ignoring some task that has a high priority for my quality of life. Comments like this make me wonder, because really, the whole point of having aides is to empower the disabled person, who needs to make his or her own decisions as to prioritizing the hours of help.
Everything can be seen as “just another thing to do”. Doing laundry frequently enough that you're presentable, preparing enough food so you're not hungry, laying out papers so you can work or pay bills - these are the daily tasks of living. To function as an adult, it is necessary to be clean, fed and organized.
I’m fortunate enough to have aides now who ask the right question: “What do you want me to do?” This isn’t always the case. There have been rough times over the years. I don’t dwell on those, but because I know this is not an uncommon problem for other disabled people, I don’t forget either.
As self-reflection goes, on this day after the 23rd anniversary of the American with Disabilities Act, I’m extremely grateful for all I have as a result of the hard work of so many selfless advocates. Their work has empowered my life so that I can help others. Without ongoing advocacy, strides can be lost. Gains can turn to losses.
Yes, living with a disability is an art. It is a risky affair, one that requires knowing the right questions to ask.