Before I acquired my disability, I took certain kinds of privacy for granted. Those were the days before I had a personal care assistant, who comes into my home and assists me with preparing meals, personal care and other tasks. This involves a certain loss of privacy. I've been fortunate that my personal care assistant, Meredith, guards my privacy vis a vis others.
This isn't such an easy trait to find in a personal care assistant and, yet, it's one of the most important. It's uncomfortable, awkward and inappropriate to have personal information about your disability or life, which someone would not know unless he or she was doing personal care, treated carelessly by someone who doesn't have a boundary.
When I was interviewing my new backup aide Friday, I saw a sheet in the application packet that spelled out the expectations of personal care assistants. I pointed it out to the new aide and mentioned also that she would be privy to certain information I expected to be kept private. I believe this is a person who can and will do that with most information or I wouldn't hire her, but the reality is I never know until someone starts to work for me if that's true.
Some might think I'd be more concerned about privacy issues involving care with someone new, but the truth is that I'm well used to some loss of privacy in that regard. What I'll never get used to is running into someone in town who happens to know some intimate detail of my life that only a personal care assistant would know and finding myself dealing with a loss of privacy on a level few may understand when confronted by an acquaintance having access to that information.
This doesn't just apply to paid helpers, but others. Privacy issues arise with volunteers and friends in the same way. Whenever we are privy to information we otherwise wouldn't have while helping someone, it is best not to talk about that information.
One of my friends underwent a transplant operation and had people dropping off meals for her while she was recuperating. She stopped opening the door, she told me, because one woman gossiped to others about how her usually immaculate house was dirty. The gossip got back to her at a time when she wasn't able to afford cleaning help and certainly couldn't clean herself.
This may not be the same as having someone broadcast details of your personal care around, but it certainly shows how unhelpful- and thoughtless- it is to spread information about someone whose privacy is somewhat compromised. It's best to think about what information should be kept private before speaking to others.
A good rule of thumb is to ask yourself if you would want the same information broadcast about yourself if you were in that position.