A couple of weeks ago I was going to the neurological clinic. My child had a cold and had to stay home from school, and my partner needed to go with me and couldn’t stay home with him. Luckily, a relative could come and stay home with our kid. I was very dizzy and it was a challenge to walk with crutches and I stayed in bed as much as possible before leaving. At one point I had to go to the livingroom to pick up some papers that I needed to bring and as I entered, the relative started showing me her hair and talking about that she had a ponytail, just like me. This surprised me because my partner had told her that I was in no shape to make smalltalk. Fifteen minutes later I was on my way from the bathroom back to bed to rest before leaving, and the relative approached me and started talking about another relative. I was really close to fainting and could hardly speak but I managed to finally push out some words, explaining that I’m about to faint. When we finally arrived at the clinic, I was already exhausted from having to interact with the relative and the drivers (explanation further down) and the hour of talking I had to do there was excruciating.
The week after when I was going back to the clinic, my kid was luckily in school, meaning I got a more quiet morning. Since I can’t sit up straight for very long, I was picked up by drivers who have a car where I can lie down. They rang the door bell, my partner opened and they started asking how I was doing. I could hardly speak, because I was putting on my jacket and shoes, but I murmured some kind of answer. As we went down with the elevator, they kept trying to talk to me, and my partner answered. When we came to the clinic I was exhausted from all the talking around me, again. On our way home, the drivers (new ones) made smalltalk, I didn’t answer but they kept on talking anyway. One of them asked what was wrong with me and I got upset, because it’s way too complicated to explain in one sentence and I honestly don’t think I should have to explain this to every person I meet. I knew the driver was probably just trying to be friendly and polite but I felt bad from once again being expected to verbally explain something complicated and somehow personal to a stranger.
Because, what I just described weren’t exceptions. Healthcare professionals, service providers of different kinds (like drivers and people from the social insurance agency), family members and so on – most people don’t believe me when I explain that verbal communication is very hard to me. They demand polite smalltalk as well as detailed accounts of my diseases and disabilities. Somehow people seem to think that helping me with something automatically entitles them to personal information about me as well as any kind of verbal communication. This makes me depend on my partner, without him working as a shield, I wouldn’t be able to access the healthcare and service I get at the moment.
(Notice the words here: demand and entitle. People act like verbal communication is something I owe them, meaning that I get to taste their anger and belittling when my ability to talk and listen doesn’t meet their demands.)
What really bothers me about this is that I know that other people with similar disabilities go through the same thing. I know many people who live in the same country as I do who have the same problems with healthcare professionals and staff from service providers, and people from many other countries report the same problems. I need people around us to wake up and see how ableist a lot of healthcare and social services are. Healthcare and help excludes people who need it, and being disabled means it’s harder to get the help that people without disabilities think we get too easily.