Wednesday, October 29, 2008

Privacy Please

So I'm having real problems with my feet and am in desperate need of shoes. It's at the point of crisis. I decided to go to a place that specializes in shoes for those who need specialized shoes - a no brainer but it took me a long while to get there. Joe had picked me up at the Vita office and I was moaning to him about the pain in my feet and my need for shoes, I looked up and saw a sign for a specialty shoe place right across the street from the office. We went over, immediately.

It was a little difficult to get into as there wasn't an obvious cut curb and there were two small baby steps into the store, but we managed to get me and my wheelchair into the place. Most of the shoes on display looked quite normal but they did also have, proudly displayed, the type of shoes you imagine nuns wearing under habits. The young woman there listened carefully as I began telling her what the problem was. At one point, when she was talking to Joe (not me) I pointed at my face and said, 'Over here' and she apologized and never did that again.

About half way through my description of what my footwear needs are now that I'm in a wheelchair, another customer came into the store. She explained that she was there to pick up a specialized insole for her daughter. The clerk asked her if she wanted to come back in a half hour or so, she said no, she'd wait. Then she stood there just off to the side listening to every word being said and watching my feet being measured and fiddled with.

I am an extremely private person - having a blog may make this hard to believe but on blogs I choose to share, what you know of my is what I decide to let you know. I found her gaze and her interest in the conversation about me feet to be intrusive. I felt exposed. I know, I know, I listen into other converstations, we all do - but I don't stand and watch and make my presence an intrusive element in someone else's conversation.

At one point I was asked a question and I said, 'That's simply to private to talk about in front of strangers.' The clerk nodded, agreeing. She still didn't get it, still didn't back away. By now she was standing virtually beside Joe leaning over to look at my feet.

I know it must seem, from other stories and situations here on the blog, that I have quips at my ready avail - always there on the tip of my tongue. I didn't know what to say. So I said nothing.

I have always been (that's always) an advocate for privacy rights for people with disabilities. From my first days working in Glendale, I was shocked at the complete disregard for privacy rights for those with disabilities. Since then I've devised trainings on privacy, written about it in my books, railed at meeting about the need for privacy - of body, of space, of information. Now that I'm in that 'class' of people that is seen differently because of disability, I am even more convinced that we need to figure ways of doing business that creates healthy boundaries. I've been asked my weight, in front of customers in a pharmacy, I've been asked my income, in front of customers at a wheelchair store, I've been asked my 'diagnosis' having tea with friends in a bookstore. (I have witnesses for all these examples.)

They have some shoes for me to try on today. I'll be stopping by after work. But I've made a promise to myself - if there are customers there, I'm going to request going into the workroom at the back to do what needs to be done in private. I should have done that before.

But, then, I always know what to do.

A day later.


rickismom said...

Yeah, I always come up with great retorts.... after the facts....

Susan said...

Yeah, the same is true for someone who is there when her friend is asked his diagnosis. The discomfort is intense and the inner anger rises over the top. But you just sit there flabbergasted not knowing what to say. Until next time...

lina said...

I think that this is an issue for many people, I have been asked my weight in a doctor's waiting room, I have been asked my diagnosis - in the hallway of a hospital, sitting with another 50 patients, waiting to go into the operating room, I have had strangers peer in over my shoulder. The problem is it's likely even more intensified with people with disabilities - as many show even less regard for the rights of those with disabilities. I'm always upset when I don't do for myself what I would do - what I would do loudly and fiercly, if I felt that someone I know or someone I am supporting is being violated. Somehow it's easier to do for others then for myself.

Ettina said...

It could be simply curiosity rather than lack of respect for privacy. I'm autistic ('invisibly disabled'), and when I see disabled people I want to know more about them because I'm interested in disabilities and often feel alone. I don't know a polite way to bring up disability, so usually I'll either try to watch them while trying to disguise that I'm watching them (which I suspect doesn't work very well) or I'll awkwardly ask something or make a comment, struggle to converse a bit about it while feeling very nervous, and end the conversation wishing I hadn't been so nervous and still not satisfied. I don't know how to resolve this. And, with only a few exceptions, it honestly wouldn't occur to me that something someone does in a public place might not be something they're willing to have me see & listen to.

gracie1956 said...

You brought up something that I am going to pay attention to now. When my IC (intellectually challenged) daughter and MIW (me in wheelchair) are out and about people have to decide which one of us they must talk down to and who they must patronize. It has to be confusing since we rarely have an able bodied/minded person with us. I think they must wonder...who let them out unescorted.