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Maintaining Privacy with SMA
For the most part I’m an open book. Exposing individuals to disability makes them more comfortable with it in the long run. Plus I enjoy sharing my life in hopes to make it easier for others. That’s not to say I don’t cherish my privacy. Needless to say when you need help with the most intimate parts of life it can be difficult. Lately I’ve had a few issues creep in that I’m not exactly thrilled with, but not sure what to do about either.
Since it’s cold out I’ve been having my PCA’s bring in the mail. I have them sort through it so I can have them toss the junk mail. Then I proceed to have them open the rest because let’s face it, opening envelopes is not my forte. In addition if I receive any packages they open those as well. It’s not like I get secret love letters or erotica arriving, but even if I did it wouldn’t be anyone’s business. Unfortunately it ends up being their business when they’re the ones opening it silently judging if I really needed another bottle of nail polish. Little do they realize I got them on clearance with free shipping.
No one wants an audience when they go to the bathroom. So, once I’m situated over the toilet I send my caregivers out of the room. When I’m finished I call them back. Of course they need to be within earshot, but it seems like the second my tinkle stream halts there they are. Not all of them, some are consumed by their cell phones. Enough of them though to be mildly annoyed knowing they’re listening to me pee.
Those are just a couple minor examples of the lack of privacy in my life. How do you maintain privacy?
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3 Replies
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My sister (who also had SMA – may she rest in peace) used to joke that she doesn’t have pubic hairs, she has public hairs. So yes, privacy is a joke for us and yet is no joke, also.
I like it when people make a point not to look at my mail – even postcards, when they open them for me and put them in front of me to read. I always let them know that I appreciate that.
Sometimes people are not being judgemental, but if I’m sensitive about something, I may think they are judging what am watching on TV, what book I’m reading, etc. I just tried to let it roll off my back. I try to be attentive to my attendants’ sensitivities – so I won’t watch a horror movie in front of people who find it disturbing, for instance.
I’m able to hire my own attendants through the Direct Funding program available in Ontario, which means that I can usually find people with whom I have something in common. I can also provide them with training that emphasizes the need for confidentiality.
And if you freeze when you feel that people are waiting for you outside the bathroom door, asked him to wait in the living room or somewhere further away. Maybe play a radio in the bathroom so they can still hear you if you call, but the sound of anything else g0ing on will be drowned out.
Enjoy your privacy!
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Thanks Tracy!
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I get what you’re saying. The opening packages thing sounds so trivial but really bugs me as well. Especially when my assistant judges me for buying yet another _______ and then proceeds to ask me why. I usually snarkily reply and say “because when you make your own money you get to decide what to do with it!” I’m not sure there’s a solution to privacy when you’re disabled, but Tracy had some great tips!
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