The 17th of December is always a day full of mixed emotions for me. In 1996, I went into the hospital for spinal fusion surgery. At that time, I was able to walk and stand, albeit painfully and slowly, but when I came out nine days later on my 16th birthday, I needed help with most of my activities of daily living. I could no longer stand up, and it was impossible for me to take a single step. For a long time, I saw this day as a day I lost something, but now I see it as the day I regained my freedom.
You see, I was so tired. It took a lot of energy to move, and once I needed to use a wheelchair, I could keep up with my peers again. I wasn’t tired all the time. I didn’t have to expend so much energy. I wasn’t slow to move, so I did not get left behind anymore. I made the experience fun. Once I stopped blaming myself for not “trying hard enough” (something my mother criticized me for, when I continued to be unable to stand or walk) I was able to worry about all of the things I could accomplish. Does it suck that I need help doing things, like using the bathroom? Yep, but thanks to technology and home healthcare, I can instruct others on how to help me. That has allowed me to focus on doing the things that I enjoy most.
That being said, even though I’m proud to be a disabled person, there are some moments that really suck. There are some moments that remind what the worst part of having a disability is. It’s not needing help, at least for me. It’s lack of access to the things I need, so I can be independent and engage with others in the world around me. Unfortunately, on December 17, a day that also happens to be the anniversary of my grandmother’s death (in 2008), I am reminded of this, tenfold.
Today the latest Star Wars movie came out. Not only can I not go see it, but I probably won’t be able to see it until it comes to streaming or television. The reason is because I lack access to the things I need to not only get out of my house, but also out of my bed. I have been trapped in bed before, and it sucks, but today it is my reality…not because I’m disabled, but because any type of equipment and services I (and others) need, are 10 times more expensive. It’s harder to get these things, and most of us have to go through insurance which can take months or years to accomplish anything.
I have been dealing with a broken wheelchair on and off, mostly on, for the past three years. My doctor, OT, and others are working diligently to get me a new wheelchair, but it may not be available until the spring, if I’m lucky. It is also dependent on if my insurance goes through. My wheelchair is extremely painful to use, and very hard to sit in for long periods of time. It also has a tendency of collapsing backwards, and slamming my body backwards when the recline actuator breaks. It isn’t very safe to sit in, so I only do so sparingly.
Additionally, my Hoyer lift no longer can accommodate me, so I need a different kind of lift. Due to something called contractures in my legs, which can be very painful, my legs hang around the bar of the kind of lift I use. My feet snag on it, and I have recently experienced multiple sprained feet and broken toes. I have anxiety every time I get up, because I never know if my foot is going to get caught. The good news is, there is a lift I can use, which is safe. The bad news is, it costs over $5000. It may not be able to go through insurance, so finding an alternate way to pay has been a huge struggle. Right now, I am barely getting out of bed, because it is not safe, and that is having a catastrophic affect on my body, as my muscles continue to further weaken and atrophy due to continued lack of movement. I would at least move into different positions, when I sat up, but I cannot sit up unaided, so I spent much of my day laying down.
This is the part of having a disability that stinks the most….knowing you could have your freedom back, but lacking that access to get the things you need, to make it happen. Today I wish I could go to the movies. I have long been a Star Wars fan. It is one of the first movies I ever remember seeing. It gives me many happy memories of my dad watching it in our living room, and of the adorable Return of the Jedi pajamas I wore as a tiny tot.
Disability is further stigmatized by all of the obstacles placed in disabled people’s way. It is often not our disabilities that “actually disable” us. It is the lack of access, the stigma that leads to a greater lack of access, and the reality that life with a disability is far more expensive than without.
So today, if you get to go enjoy Star Wars…have some popcorn for me, and think about ways you can help support the disability community, so those of us currently unable to go see this film, or any other film franchise we happen to love, due to lack of access, have a greater chance of not facing these barriers, in the future.