Disabled people are the world’s largest marginalized group, and yet often some of the most excluded people in the world.
Imagine your most basic needs as a human. Water. Shelter. Access to go to the bathroom in a safe and sanitary environment. These should be a given for everyone. Everybody should have access to these things.
I’ve never struggled with incontinence. I’ve been grateful that I’ve had amazing control over my bladder, so much so that I’ve damaged my body preventing myself from going to the bathroom for years.
This is a reality many wheelchair users face. The need to go to the bathroom, but the inability to not be able to access bathrooms that are available. That’s not the case for all disabled people though. One of my very best friends has always worn Depends. I’ve known them for over 20 years, and that’s just been their reality and it’s no big deal.
They are a grown adult, but they use adult diapers because they can’t hold it.
They don’t have the control, nor should they have to worry about holding it. Our bodies are not meant to hold onto waste for long periods of time, so when we do it we damage our bodies. Those of us in the neuromuscular disability community even joke about something we call “pee math” the amount of time we have where we don’t have to go to the bathroom and can hold in our urine. It might seem funny but it’s actually really dangerous to our health and we have no choice but to do pee math.
Even though my friend has access to go to the bathroom whenever they need to, it can be hard to get them access to have help being changed. They are not physically able to take care of it themselves, but they can only have access to be changed at home because most places don’t accommodate them. This needs to change.
My story is a bit different. For my first 13 to 14 years of life, I was able to access bathrooms mostly on my own. But as I lost the ability to walk I lost the ability to go to the bathroom by myself. This meant that I had to learn how to hold my urine. It was celebrated by family and friends when I went 34 hours without using the toilet once. In retrospect, that’s horrifying to think that this is something you should celebrate, but at the time we thought it was good that I could hold it because that meant that I depended on people less.
After my spinal fusion surgery at age 16, I was put on a catheter for a few days and it made my bladder flow in a way where I couldn’t hold it. For months, I could no longer hold it, and so I was anxious about going back to school. Even before my surgery, I had no access to a bathroom. The ability to stand up made the ability to go to the bathroom no longer something I could do at school, and my school wasn’t willing to accommodate me. I didn’t have a PCA. I didn’t have an accessible bathroom.
That meant that from 7:30 AM until my bus came home at about 3 PM, I could not go to the bathroom at all. I had to hold it, and when I couldn’t after my surgery things had to change. The school couldn’t and wouldn’t accommodate me, so that meant that I had to accommodate them. They allowed me to take my bus home early, after lunch, and I ended up having to drop out of my honors math class, which was seventh period. I could leave school early to go to my home to go to the bathroom. That was all I was allowed and given, and if I was lucky somebody would be home to help me.
The point though is that because I was disabled my school could not and would not give me access to a bathroom. I had to change my schedule to accommodate my needs when I was unable to hold it. I eventually retrained my bladder and started being able to hold it, which I did regularly for between 10 to 12 hours most days. It also affected my liquid intake because I was less likely to drink to ensure that I didn’t have to hold as much liquid.
I was constantly dehydrated because I wasn’t getting enough liquid. Nowhere did anybody ever say that this child deserves access to a bathroom because we don’t live in a society that thinks about including disabled people. Nobody was there to protect me or my bladder.
Access to a bathroom is limited to many disabled people all around the world. But nobody talks about it. Nobody thinks about it. Nobody recognizes the harm that comes from not having access to one of the most basic things that people need to survive.
Disabled people get sick and hurt and die because they don’t have access to the things they need. I wish I knew the solution because I would advocate for change, but how do you advocate for people to start thinking of you as a human being and start believing you deserve access to the things you need to survive when it’s clear decision-makers especially think of us as wastes of space that don’t deserve accommodation or consideration at all?