Most adults have some degree of privacy.  Growing up, parents usually teach kids what should be kept private and what’s okay to share with others.  Parents often gradually give their children more and more privacy as they grow up.  From very basic things early on, such as using the restroom by herself/himself, to more complex things as they grow up, like dating, children are taught the concept of privacy.  When we become adults, we decide our own level of privacy.  When people find her/his significant other, they often share private things with them.  Privacy is a human right.  In many scenarios, it keeps our dignity as people.  For people with disabilities, having any degree of privacy often is nearly impossible.

As a pretty avid disability advocate, I’m generally a pretty open person.  Since I believe part of my purpose in life is to educate others on what people with disabilities can do, I share my personal experiences, thoughts, and emotions with others in these journal entries, videos on the YouTube channel, media interviews, presentations, and other avenues.  It’s my way of feeling like I’m helping others.  While being open is part of my personality, I think having a significant physical disability has forced me to be open. Let me explain.

As I’ve explained in several of my previous journal entries, I need physical assistance with all of my basic needs.  I need somebody to literally undress me, lather me up and rinse me in the shower, and get me dressed again every day.  Every time I use the restroom, somebody needs to pull my pants down, clean me up after I go, and then pull my pants back up. I share these examples not to invoke any sort of pity, but rather to demonstrate how little privacy somebody with significant physical limitations may have. Obviously, I don’t really have other options in these circumstances, and I’ve, in essence, “gotten used to it.”

Physical body privacy isn’t the only sort of privacy people with disabilities often lack.  Recently, I ran into a situation where a care worker quit because she read text messages on my phone between my mom and I talking about her.  Now, yes, we were wrong to be talking about her (I was complaining she was lazy and always causing issues), but she had no business reading my messages.  It wasn’t like I was texting right in front of her either; she had to have gone into my phone and read them when I was out of my chair (my phone is mounted on my chair).  Yes, I realize I could have a passcode enabled to open my phone, but that brings up more issues (if I had to enter a passcode every time I use my phone, things would take me even longer to do).  What really irritated me about this situation is that the worker obviously knew I use my phone and specifically text messaging as my main means of communication with my parents, and she felt she had the right to go in and read my messages.  Really?  I guess maybe I put too much trust in people.  Again, my mom and I acknowledge we were wrong to be talking about her, but it’s tough when I rely texting to communicate.

Another thing people with disabilities often have little to no privacy with is finances.  Many rely on government assistance to live.  When you receive government financial assistance, one has to report any income and assets she/he has. There is a review done regularly for eligibility for Supplemental Security Income (SSI).  I live in subsidized housing, and I have to do an annual recertification where I have to provide all of my financial information.  The information is used to determine what my rent is for the year.  While I understand why this needs to be done, it can be a little daunting.  Providing the information year after year is not only time consuming, but it can also mess with emotions.  While I’m not ashamed that I need government assistance, it’s not something I’m proud of or want to be reminded of either.

Having little to no privacy in life isn’t fun, but it’s something I’ve learned to live with.  When you rely on others for so much physically, you try to savor any dignity you can. It can be as simple as being able to pick up a Kleenex to blow my own nose.  As silly as that sounds, using a tissue myself takes a lot of concentration and effort, but I do it because I’m able to. I realize I’m fortunate that I’m living in my own apartment. While I gripe about having limited privacy, people who live in group homes or facilities have even less. 

Privacy is one of the few things that’s hard to modify.  It’s something that we, as people with disabilities, have to try to figure out how to persevere on an individual basis.  For myself, I realize that giving up some privacy also means that I’m able to be as independent as possible.  That sounds like a weird analogy, but by having people come in to help me, I’m able to live independently. That’s what I try to remember when I have issues with privacy.  It’s part of this unique journey I’m on called life! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.