In Part III, I’d like to talk about common misunderstandings about Personal Assistants. I know from interviewing many people as well as from conversations I have with people that they don’t “get” what a PA’s job is.
Some people think a PA is a maid. They tell me “I wish I had someone come in and do all that stuff for me.” Others think a PA only does personal care, like helping with bathing and feeding. And a few people have just looked at me in a puzzled way and asked “What does your PA do?”
The truth is that a PA assists a disabled person with activities of daily living. Depending on your disability, this can include a range of things, a few tasks or many. One of my friends who is a paraplegic has a PA who does light cleaning, shopping and some cooking. That level of assistance keeps her going. But I have other friends who require quite a bit more assistance, including personal hands on care. Some agencies differentiate between PA’s who mostly do housekeeping tasks and those who do both that and hands on care.
The reality is that a person with a disability is usually evaluated by a medical person and his/her needs are assessed. Once this is determined, then a list of tasks is drawn up. It’s a very different arrangement than hiring a maid since the assistance is not a convenience but a physical necessity. So while having someone do these services if you’re able bodied makes things easier, not having someone do these services when you have a disability leads to real problems. I’ve seen pwd who go without PA’s become ill, have to be hospitalized and wind up in nursing homes.
I think it’s important that everyone – able bodied and disabled – understand what a PA is. Those of us who rely on them for independent living often struggle with accepting that we need such help and this is compounded by misunderstandings. It would have been helpful when I was struggling to accept that I needed a PA if people around me had known what a PA was and supported me in finding one rather than joining me in my denial at the time.
If you want to see an interesting portrayal of the relationship between a PA and a pwd, rent the movie Passion Fish. There’s a scene where friends of the pwd visit and the PA winds up serving lunch to everyone. It really shows how we struggle to assign roles both to pwd and PA’s. Sometimes that struggle is between the pwd and the PA when others are present – as opposed to being alone. It isn’t possible to fit what a PA does into the definitions that exist for able bodied folks, simply because the very relationship itself is defined by the needs of the pwd.
A PA for me, for lack of a fancier description, is my arms and legs. But it’s necessary to see beyond what may at first glance seem to be dependence. As my PA put it she “doesn’t take care of me, she assists me.” This view is respectful of my autonomy. It is a very difficult job, one that requires the ability to be present, spontaneous, generous and giving. Perhaps if more people truly understood what PA’s do, they would be paid on a better wage scale.
Copyright 2007 Ruth Harrigan
A DIFFERENT LIGHT: Short stories and poetry by Ruth Harrigan 