We can talk about the dangers of ableism all we want to, but if we don’t address the potentially biggest culprit in the room, it’s not going to do us a bit of good. Especially at the beginning of the process, if you are permanently injured or diagnosed with a degenerative disease, like I was. I can tell you from first hand experience, you can be your own worst enemy. You can hold yourself back with internalized ableism faster than society ever will.
It starts out with the sheer shock of diagnosis. You go to the doctor, convinced that a month of medicine will set everything right in your world again. Bad stuff happens to other people, not you. Then the bad stuff….it happens. A team of doctors comes in to turn your world upside down. You have a chronic condition. It has no cure and it is degenerative. Medical treatment can slow down the progression, but nothing will stop it. In my case, it was “You have Rheumatoid Arthritis. It can’t be cured, and you will live a life of pain. You will be totally disabled and wheelchair bound, unable to work within less than 10 years. You will be dependent on your family for your care.”
Thanks, Doc. That was the most encouraging words I’ve ever heard. It caused me to freak out, and all the internalized ableism came out. I convinced myself nothing was wrong with me. After I got over the doctor induced “woe-is-me” phase, I worked out relentlessly, damaging my bones further. There were periods that I refused to take my medicines, angry at the fact that I had to give myself shots twice a week and take a gazillion pills a day in order to function. I didn’t let my body rest and heal, in order to get my disease under control. I was my own worst enemy.
Side note, by the way: Wheelchair bound is not an appropriate term used by the disabled. Wheelchair users look at their chair as giving them the freedom to engage in everyday life. I’m using the terms that were used with me, and I’ll wrap all that up for you in the end.
After that came acceptance. I knew I needed to work around having this if I didn’t want to be “totally disabled, wheelchair-bound and unable to work.” I’ve always been independent, and the thought of being a burden on my family was utterly horrifying. I started taking it more seriously and listening to my doctor more. I took my meds, went into remission, and it was fine. For years, having RD was an “invisible” disability. I had it, and it affected my everyday life. However, unless I told you something was wrong, there was no way to tell. I worked full time and at one point held down three jobs. I went to college. It didn’t hold me back in any way.
Then military intelligence reared its ugly head. (There’s an oxymoron if there ever was one!) There were only a few military/VA rheumatologists in north Georgia. They decided to deploy mine. Then to complete the one-two punch, the pharmacy at the VA would only give me Naproxen to treat the pain. Nothing at all to treat the disease itself. If you’ve read any of my blogs, you know that RD is an immune system disorder. Naproxen helped slightly with the pain of having your immune system eat your body, but pain or not, it’s still eating. Sooner or later, Naproxen didn’t even help the pain. I spent over a year of untreated RD. Ableism kicked in again. I couldn’t walk unaided, but I was too ashamed to use a cane. At the time, I would rather be indoors than to be seen with a cane or in a wheelchair, so I tried to quit my job. My manager and assistant manager were a step ahead of me. I worked at Michael’s at the time. They told me that they had noticed my rapidly degenerating condition and knew that I would soon approach them to leave my job. I taught art classes and they liked my work, so they had already agreed to give me a position in floral design when I came to them to quit. I would spend my days sitting down, making flower arrangements and working on projects to highlight the products we sold. My managers were the absolute best. Eventually I was forced to start using a cane. I was completely embarrassed. How many people in their late twenties needs a cane?
This period of being totally untreated lasted for about a year. I didn’t go out if I didn’t have to, and I was completely ashamed to go back to Texas. I love my family and knew that they were completely supportive, but I didn’t want them to see me like that. I knew it would break their hearts. Finally, my rheumatologist at the VA won the fight to get me treatment, and I could walk again. This period of time started to really teach me how to advocate for myself. Most of the ableism I encountered was at the college, and I had wonderful support from my professors. I had to relearn it at Sam Houston, but I’m getting there.
Eventually, I realized that in a way, I was right all those years ago. There is nothing wrong with me. I have no reason to be ashamed. I have different challenges. I get around differently. My needs are the same as everyone else’s, and they are not “special”. I use mobility devices, and I know that there is nothing wrong with this. I have nothing to apologize for when I have to address my personal needs, whether it be from using a disabled parking spot to taking off work because my joints just don’t want to function anymore. This is what it means to slowly get rid of internalized ableism and stop getting in my own way.
With this acceptance of my own internalized ableism came another realization: I have nothing to be ashamed of when I use a mobility device. In fact, there’s so much liberty in using them that I can’t believe I ever was. It changes your entire perspective of getting a new cane, a walker, or even a wheelchair. People tend to feel sorry for you, for having a walker or a wheelchair. I was delighted to get a walker. Canes are painful to use when you have damaged shoulders. I could move better, faster, and longer. That’s pretty hard for abled-bodied people to understand. They see a degenerating condition when you get your first wheelchair. I’m trying to save up for a motorized chair….and I see nothing but freedom and independence. That’s why it’s inaccurate to used terms like “invalid” or “wheelchair-bound”. Once we can cast off the stigma, we can get rid of our internalized ableism.
Unapologetically Disabled 