Photo Description: The author grins wearing a red graduation gown and cap and holding flowers at her high school graduation. She is seated in her manual wheelchair (not visible) and has shoulder length brown wavy hair and glasses tinged brown in the bright sun.
When I was a young girl, my aspiration was to become Empress of the Universe. I thought (correctly, I still believe) that if I were in charge, I could make things more efficient and better for everyone. Unfortunately, that position is not yet open, so I had to shift gears when it became apparent this would likely not become my career (I haven’t completely give this up, just delayed a bit — although my cat asserts she ultimately reigns supreme).
All kidding aside, there was a time during my adolescent years when I started to contemplate (worry? fret?) about what my life would look like with a disability as I matured toward adulthood. As I grew up, my disability worsened. I went from walking down my school hallways, to needing a wheelchair (and helpers to push), and more assistance with physical activities. As my mobility decreased, my pain and fatigue increased. Everything was becoming harder and, when I was a kid, everything was also largely inaccessible.
In this context, with my physical limitations being significant and the community around me being inaccessible (with the exception of most of my school), I had difficulty imagining what my future could look like. Thankfully I had resourceful parents, a will of iron, and the ability to dream beyond what I could see nearby.
Building a Bridge to Adulthood
I think there are several aspects of my youth that set me up for creating my life with a disability. It definitely helped that I had parents who had high expectations that were not altered by my condition nor disability. They expected good grades, involvement in activities, doing chores (being responsible), and independence/autonomy from their children, regardless. It helped to have this background and their support in finding my way to adulthood.
A few other aspects were key:
Unlimited imagination.
I never lacked imagination, so when I didn’t see examples of disabled people living in my community as adults, I had to dream it up myself. There was no one on TV or in the media to be a guide. But I remember later in high school we once had a guest speaker, a man who used a wheelchair due to paralysis from a car accident and who became a DJ, and I was encouraged by his independence and having a good job that he enjoyed. Still, there was a dearth of adults with significant disabilities and I had to dream up for myself the contours of the life I wished to achieve: college, a good job, a community where I could roll my wheelchair and get around (since I knew I wouldn’t be able to drive), and a home where I could live independently.
Hunting down resources.
In my family we were encouraged to go to college as a pathway to adulthood. The work in grade school was to learn good study habits, do well with our grades, and contemplate what we wanted from college. This plan made sense for me as I loved academics and did well in school. The college track also made sense because I would not be able to do highly physical work and would eventually need a career at a desk (computer). Hopefully it is better for disabled kids now, but there were no services to help me with planning for post high school graduation. My mom went with me to meet the guidance counselor, who helped us identify potential colleges for tours and applications. But beyond that there was nothing, outside my physical and occupational therapy where we discussed independent living tasks, created tools, and practiced activities I would need to manage on my own (like basic cooking, showering, dressing, and so forth). To be honest, a lot of the important work was done on our own at home, talking about the skills I needed to master or the set up I would need for managing things on my own.
Believing that where there was a will, there was a way.
About a year and a half before graduating from high school, I went through a series of surgeries to replace all four of my hip and knee joints. The recovery was grueling and I spent long periods in the hospital, then rehabilitation, then still more limitations and recovery at home. The goal was to improve my pain level (which it did) and my ability to function (which it also did, but I still needed a motorized wheelchair for mobility) — all in the hopes that it would make college (and eventual independent living) more possible. It was hard, but the plan worked. On top of this huge medical, mental, and physical ordeal, I was able to keep up with my studies and apply to colleges. This experience was a struggle to get through, but it really ingrained in me that if I keep at things, kept working and trying a little bit every day, that there was a way to get even difficult things done. At some points we didn’t know if I would be able to stand up again, or take a few steps, or transfer from my wheelchair to bed or another chair. There was a lot of uncertainty, but support from my loved ones and my iron will (or determination) got me through. It would be the same with building my life with a disability. My will would lead the way.
Making it up as I went along.
Perhaps most of all was the ability to make a solution as I was living the experience. We didn’t know all the accommodations I would need and sometimes it was in the moment that I would have to figure things out. When I was accepted and chose my college, we had many conversations with the administration about paving accessible paths, adding accessible doors with a remote control, moving classes to accessible buildings, getting help with laundry (it was in the basement of the dorm and there was no elevator), and more. But there were unexpected barriers that either I had to navigate myself or ask for help. This is the real key to living with a disability: something unexpected will always happen eventually that we will need to figure out a solution.
Life is a practice.
College was important for increasing my independence as a disabled person and the confidence that I could build a life for myself. I remember touring my college as a prospective student and meeting a current student who seemed to be living my dream at the time: going to class, living in a dorm, having regular college adventures. It seemed incredible and hard to achieve at that moment. But step by step I made it a reality, as I have been doing ever since throughout my life.
I hope youth with disabilities now have easier access to role models (or examples of adult disabled people living their best lives) and help getting there. My experience was more like being giving a block of ice and being told to carve a sculpture with no tools or guidance. I feel my parents and my determination carved that path with great exertion. It paid off and I am so grateful to lead the life I do, but it was not easy.
At the same time, there was a lot of wonderful experiences that I did not imagine: getting married, buying a home, adopting a cat, traveling with my husband, and more. Even though I dreamed big, there have been wonders beyond my imagining. Now, isn’t that the best kind of life — one that encompasses achieving dreams and enjoying surprises along the way?
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I think it's safe to say you've sculpted the heck out of that ice block 🤗
Kelly, what an amazing and inspiring life story! You rock girlfriend.