Disability Pride 2024
Pride in one's disability is a very uniquely personal experience for each person. We all have our own specific type of disability and even within that category, our own unique experience of it. For myself, I spent much of my teen through mid twenties trying to not be defined by my muscular dystrophy. I desperately wanted to fit in, to be normal. Not a terribly different experience from most people of that age. My disability was one that has progressed and for a long time was probably not obvious to people at a glance. Early in life I went through phases of using a walker and leg braces then by middle school had begun to not need either. However by the end of middle school and into high school, I had to rely on a motorized scooter for the longer distances between classrooms and buildings. I was given extra time to leave class to get to lunch or other events. It had become obvious that I was different, whether or not I liked that.
The idea of disability pride was not something in my lexicon as a child during the 1980s to early 1990s. To be fair, this sort of thing wasn't really around for any groups in that period. The Americans with Disabilities Act (ADA) only came into law when I was in middle school. We had only just begun to see changes to help integrate students with disabilities into the general classroom structures. Even so, I did not really know any other kids with similar issues to my own. There were a few kids with intellectual disabilities, but they would be off in the special education classes and rarely even then, mingled with the rest of the students. So my inner comparisons were always to what other kids in my class were like.
Our class trips were often to places I couldn't really go to, such as a water park. Places with lots of climbing or other physically demanding activities that were beyond me. I remember having my parents explain that sometimes people just don't think about others and their needs. They did their best to not allow it to feel like it was my fault for missing out; but as we all know, sometimes our minds will not agree with those attempts. It was often framed to me as 'well you get a day off of school!' but that rarely felt like a reward. Even something as trivially to most as school lunch time was very different for me in elementary school. Because it was too far for me to walk at that time, I would go to the library and have my lunch with the librarians and the assistant teachers. I do have fond memories of that time and in a way that helped further my love of books and libraries even more. I was more often than not, surrounded by adults rather than kids my own age.
By the time I became a teenager and began that journey to figuring out who we are in the wider world, I was already trying to not define myself by my disability. The world was telling me that it was a limitation, a barrier, even a burden to some extent. There was also the fact that the medical professionals had no idea what to expect for my progression. There were predictions ranging from mild strength loss to not living past late teens/early twenties. It took me a long time to realize they had no clue. I also was able to not think about it too much because of how small a town and school I was in. Everyone had for the most part, grown up with me and had just de facto accepted me as I was. No one ever brought it up. I just was that kid that used mobility aids and needed extra time to get from point A to point B.
Once an adult and the advent of the internet becoming commonplace, I began to see others' stories and difficulties. It began to click to me that all the things that had frustrated me over the years were a shared experience. The lack of any examples in popular media meant I had no comparison point prior. I worked in a disability access office at university and began learning all the various ways of accommodation and outreach that were available to students. I was finally being encouraged by those working in that office to try new things, find ways around any barriers to those new things. Without that support, I probably never would have done honors courses, applied to (and gotten) a position as an Orientation leader for the university, or taken scuba diving class with someone to help me with the equipment. Even as my abilities were declining, I had learned to be proud of myself and not let the rest of the world define what I saw myself as.
It is very heartwarming to see how much change has happened. And yes there is much more work that needs to be done. I hope that kids growing up today get more and more examples of living with various disabilities and how to tackle the challenges they face. Every situation may be unique, but seeing others and how they face barriers helps encourage those that may need it. Knowing that there is a path forward is one of the most important things to have.
Pride is about finding the value in oneself. That is not always an easy thing for us to do. Our internal voices are often harsh and unfair. The world itself can be a barrier that may seem insurmountable. We may encounter others who demean or belittle us in ways they are not even aware they are doing. But they are the ones missing out on the experiences and stories from people of all different walks of life. Stories have and always will be important to me. Often we learn as much about ourselves as others from them.
During this month of Disability Pride, I have seen so many stories, positive and negative, that have been important records of the wide variety of disabilities that exist. People doing their best to live their lives to the fullest extent they can. I sincerely hope with the future generations, there will be less and less things blocking people from achieving the goals they have for themselves. Ultimately, I hope for a kinder society that helps everyone move towards the goals in life that we all have. And to respect that not everyone has the exact same experiences. Pride in our disabilities is pride in our identities, self worth and dreams.