I love our house but we bought it before I got sick and it’s not accessible. It’s over a century old and it’s a monument building, which means we can’t change the outside in any way. The house has three floors and two flights of very steep stairs.
The shower in the upstairs bathroom has a step, but with suction cup hand rails and a shower chair we’ve made it workable. The bedroom is on the top level as well. Going up and down the stairs every day takes too much energy, so we put a bed in the lounge room on the main floor.
I spend all my time in the lounge room because it’s right beside the kitchen and toilet. Our main floor is one floor up from ground level, so I have to walk down and back up a flight of stairs every time I leave the house. I walk upstairs to shower twice a week and use wet wipes in between. We tried renovating the ground floor to create a living space with everything I need on one level, but the contractor we hired stopped showing up one day and our renovation budget disappeared with him. For now, I’ve converted with unfinished ground floor into my little home gym.
The biggest frustration with this house is that the front doors are too small for my wheelchair. The wheels need to be taken off just to fit the frame through. Without my balance, it’s nearly impossible for me to disassemble the chair, shove all the pieces through the doorway, get myself outside and re-assemble it. If I don’t have help getting the wheelchair outside I become a prisoner in my own home.
There are car services for disabled people but they don’t help you leave the house. So some days, when I have energy, I sneak downstairs and do some exercises in my workout space. Most days though, I just lay in bed watching Netflix. I have social anxiety, so I’m not sure I’d want to leave the house by myself anyway, but it’s horrible when the option is taken away from you.
It makes me sad when I get excited by a hotel, restaurant or event and then find out that it’s not accessible. I get so excited for new experiences, and when they’re not accessible, it’s like they’re being taken away from me. I know I should lower my expectations but I don’t want to have to. I just want places to be more inclusive.
Sometimes it can be hard to find accessible toilets here. A lot of restaurants have washrooms on different floors that can only be accessed by stairs. In those cases I just try not to drink much and I wait until I get home.
I get anxious just thinking about public transportation. Relying on people to get on and off a bus makes me uncomfortable. I have to research which stations are accessible before I use the metro. When I travel, regular bus tours are out and special accessible tours are crazy expensive. I’m lucky that I can transfer into a car easily enough so I can take regular taxis, as long as there’s room in the back for my wheelchair. I don’t need a special adapted taxi.
We recently went to Mexico for a little vacation. When we booked I noticed that only the basic rooms had adapted bathrooms. We made sure the swim-up rooms could fit a wheelchair and then made it work. The shower had a step but it was roomy enough to sit down in. The double rain shower heads are pure luxury and made it worth the extra effort. Sometimes it’s not possible to make do, and it’s frustrating that you have to choose between having a shower and having a great view.