Sometimes it's hard to explain to people why I need other severely disabled perspectives and people in my life, but when I see posts trying to explain how sometimes disability isn't inability, just inability to do all that an able-bodied person does, I find it much easier to identify the reason why I need severely disabled people and their perspectives in my life. Wow, that was one hell of a sentence, anyways, of course, it is disabling to only be able to do some stuff. I'm glad that some people find ways to explain their disability by describing how they could have an immaculate house, but eat poorly or never bathe or how they could exercise, but not have enough energy left over for work. However, I need able-bodied people to not see these articulately-described experiences as the only experiences. Sometimes disability does mean inability.
If I had nothing else to do at all, I could not shower on my own, I could not do my laundry without assistance, I could not clean my room, I could not get up off the floor, I could not have enough energy to transfer as much as I should, and I could not walk AT ALL. These experiences of significant inability would not change in a vacuum, and yes, no one exists in a vacuum, but being able to do anything in a vacuum gives forth to a possibility someone could do something one time (at significant cost) if they really needed to. It begets the possibility of survival in a situation where a severely disabled person would die, so that is why I need severely disabled perspectives because death isn't like anything else.
I respect people's experiences with lower support needs disabilities, and I think that they should have the right to discuss them. I also think that disabled people shouldn't have to appeal to able-bodied people, begging for belonging. I simply wish that, in a world where more privileged perspectives are often overrepresented, severely disabled perspectives would be represented too.
I've spent so much of this post decrying marginalization of severely disabled voices, so now I would like to share a bit of my own, not really related to asking to be heard:
Things I'm excited for as a severely disabled person: moving out of my dorm and into a city with better caregiving infrastructure, not having to rely on informal caregivers like friends to help with laundry and the bare minimum cleaning not to make my space a hazard, having people who can help me get dressed more often, home health that can access my building (instead of me having to fetch them from the lobby), a ceiling lift so I can stop purposefully dehydrating due to my inability to do as many transfers as I need throughout the day, an adjustable hospital bed that allows me to sit up without screaming every morning, better pain management, prescription refills, even one day of sleep that isn't plagued my pain that penetrates its way into my nightmares, a solution for food without dining halls and frozen meals (if possible).
I think of my privilege all the time, maybe even a bit too much, but I think it is important to evaluate the things you look forward to from time to time and think about if what you despise is something someone would wish for. Of course, you are allowed to struggle even if it's not as bad as someone else. I most definitely am not saying that you aren't allowed to struggle or complain or have feelings, but I think it is important to remember, like stated before, that we do not live in a vacuum and to take into account that people may have more extreme struggles than you could imagine.
One of the reasons I would love to hear more severely disabled perspectives and voices and words is because it means that they haven't been killed by systemic ableism yet. Another reason is that I think that people deserve to see the nichest versions of themselves represented in others. Without sharing the most basic experiences, like the taboo needs of severely disabled people, people will never realize there is a whole wide world of people out there who may understand just how extreme things are, just how maddening.
If you are telling people they are not alone in a struggle (as I have been told), the people that are struggling must be struggling on similar levels. I don't want to be told I am not alone and then compared to people who don't need as much support because it only makes me feel more isolated. In a world that already isolates severely disabled people so much, it is important not to trivialize our struggles further with your words.
