I was asked to write an article for work for International Person’s With Disabilities Day. I wrote the following and called it Visible Invisible. It was put on the web site at work in a permanent place along with other people’s stories about living with disabilities. I’m very proud of the piece and it got a lot of great reactions. Even better, it got people talking. The theme for this year was invisible disabilities. I didn’t know that when I wrote the article.
I hope you enjoy it.
I often feel as if I am living on an island.
I live with spastic Cerebral Palsy and relapse remitting Multiple Sclerosis. They are both invisible disabilities. They do show themselves from time to time when I have difficulty walking or speaking or trouble with balance and dexterity. On top of the physical ones, I deal with invisible symptoms like brain fog, crushing fatigue, tremors, spasms, blindness and others.
It is like there are two other people living inside my body and I am in a constant battle to gain control of myself. I feel that I’m both seen and not seen. I feel like I’m on an island within myself, that though people see me, they can’t see what I’m going through. Both the Cerebral Palsy and the Multiple Sclerosis come with their own individual challenges and there are many obstacles that I have to overcome in a day. Sometimes, even the most simple of tasks can get the best of me.
It’s one of the reasons I’m so open about living with my disabilities and what I go through on a daily basis. My frame of mind is that knowledge is power. If I’m able to help people understand what I live with, to help them see what it’s like to live with in maybe it will help them to learn something about themselves.
I’m fortunate that within the government, there are so many resources for people who live with disabilities and that most people have been open and accepting of my disabilities. It’s wonderful to work in an atmosphere where I feel seen, where there is little to no judgement. It makes such a huge difference and I don’t feel alone on my island.
However, there were times while working in the government that made me want to retreat to my island sanctuary. There was one instance where a colleague said that I couldn’t possibly have Multiple Sclerosis because I didn’t look sick. I tried to explain to her about some disabilities being invisible, that not everything made its presence known to others, but she kept saying I didn’t look sick. She just didn’t understand no matter what I told her. She shunned me afterwards because she thought I was faking it. When I went to my supervisor and talked to them about it, I was told I was making a big deal out of nothing. I felt dismissed.
When the Multiple Sclerosis first made itself known, I lost the ability to walk, speak or type. I couldn’t see very well either. I was bedridden for a month and a half. I was working for a director at the time. She was understanding at first, but then grew impatient at the amount of time that I was taking off, telling me that I was leaving her in a real bind. I worked hard to get to the point where I was able to walk with a cane so that I could return to work. I tried to do my work to the same standard, but was having difficulty. She told me that if I didn’t improve that she would have to let me go. Thankfully, I was able to find another position and left with my dignity in tact.
I’ve often struggled to be physically accommodated within the government. In one position, I was in a meeting on the sixteenth floor of a building when the fire alarm went off. With my balance and dexterity issues, stairs are my literal downfall. I can go up stairs with no issue but can’t go down. That day, I was told that I was not disabled enough to use the emergency elevator. My supervisor at the time said that I was perfectly capable of walking, so I would take the stairs with everyone else. I’m not sure how I managed it, but I am thankful that one I had three coworkers looking after me, one in front of me, one behind me and one to left of me. I held on to the railing for dear life, my cane tucked under my arm. When I got to the main floor, my body was completely shot.
Yet, for all of those difficulties being disabled in the government, I’ve experienced kindness too. The kindness of people has astounded me, time and time again. I’ve learned a lot about myself and what I’m capable of but especially when to use my voice and when to offer counsel. Most of all, even though my island still sits within me, surrounded by water and the whisper of leaves, I don’t spend nearly as much time there as I used to.
Working in the government while living with a disability can be challenging. However I’m accommodated now in such a way that makes my working life manageable. In the government, I feel seen. Though my disabilities are invisible, I am not.