For those of you who are new to my litlle corner of the internet or need a refresher. I’m 27 years old with a disability that requires 24 hour care, because of this I live in a nusing home. When I tell people where I happen to live many people act horrified or confused. I assume that’s because they picture something like the photo below.
I would like to take this oppertunity to debunk this Dicensien fantasy by answering some of the questions i get most often.
1. My folks put me in here
Again, my life is not a Victorian novel. In fact my folks designed their home around the idea that I might have to live there indefinitely, connecting a wheelchair accessible bathroom to my childhood bedroom so it was more a bachelor, or in my case bachelorette, pad.
This of course was and still is greatly appreciated, but what 20 something wants to live with their folks?
In addition, although my hometown is very nice, I felt I had no future. The employment opportunities for someone with my aspirations or skill set as well as no accessible public transit so my dad or mom had to be my driver and that’s not good for either party. Again, i’m an adult and don’t wanna be running to Mommy and Daddy in order to have a life. By moving here i have not locked myself away from the world, I’ve opened it to me.
2. Can you leave?
I’m not in prison! Of course I can come and go as I please. As a matter of fact,living here gives me that freedom. If I lived anywhere that did not have 24 hour care, I would need to sechdule my life around my care instead of the other way around.
When I briefly lived in my own apartment, which didn’t work out for a number of reasons i may get into at some point, I had set times caregivers would come into help me with ADLs (Activities of daily living) as well as notes for my university classes and whatever else I may need. This may sound great but in reality it caused a lot of fear and stress. After all, if I needed help with something be it big like needing to go to the bathroom or something small like dropping something if nobody was around I would have to wait and hope for the best. I also had a bedtime, talk about infantilizing. Even when i moved back with my folks I still had caregiver issues, in fact they were worse because sometimes the caregivers didn’t show up which caused my mom anxiety and caused me to feel guilt even though I was not directly at fault
Since moving to my Halifax nursing home my life has become my own. I know that no matter what time of day or night I can get what i need to live a normal safe life, and I can finally pick my own bedtime!
3. Nursing home residents are not part of the community.
Ok so this one isn’t a question, but it is the most offensive assumption so I must address it, Many people, including those in the disability community assume if you live in care you are not a engaged member of the community. To them I say, I sit on two disability advocacy boards, one of which I helped create, If there is a event at my university you bet your ass I’m in attendance or organizing it. Oh,and I am a published author. Any questions?
4. Romance and sex
Yeah, I’m going there.Let me make this simple, yes people with disabilities want romance and sex. After all, we are people. I’m not gonna lie it can be awkward but of course I can be intimate with my partner in my own house.
After all this isn’t just a home, this is my home.