Standard Disclaimer: These are my words about my own experience, which is not representative of anyone except me.
One of the more common assumptions about disabilities is that people with them aren’t able to work, or if they do, it’s in low-level jobs without much in the way of salary, benefits, or advancement opportunities.
I am here to inform you this is not so.
When I first got sick, I was very near completing my first year of post-college work. It was a professional position, salaried with benefits, and my typical workweek was anywhere from 40-60 hours per week. Thankfully, the benefits there were excellent, and very soon after it became clear this thing was going to be a mess, I got onto FMLA, and because we accrued one day of sick leave per month and I had used maybe one the whole time I worked there, I had ample time to go to my doctor’s appointments as well as flex my schedule around my good days and bad days.
When I was having regular attacks, I cut my visits in the community down to the bare necessities. I used one of our conference rooms, so when I could feel one coming on, I would go in there until the movements stopped. At my peak I was spending 2-20 minutes there 10-12 times in an eight hour day. I made all of my visits joint visits, and my coworkers always drove as I was unable to, and that way if I was struck with movement they could find a way to gracefully excuse us from the visit and help me elsewhere. There were some visits where I did have movement, but could hide it, and some where the movements in my face and neck were…conversation starters. Which was super great.
The important thing to note here is that people, especially young people, are brave, resilient, and resourceful. I was able to create a network of coworkers, friends, and family that helped me out, and in regards to work, I knew the systems out there to protect me and took advantage of them. I also found that clear communication with my bosses was incredibly important and beneficial.
People are often very receptive and eager to help if you’re willing.
One of the most difficult things I ever did was announce at a staff meeting what was going on. The choice to disclose was very difficult, but since my symptoms are not exactly subtle, and since they were affecting the way in which I was able to do my job, I felt it was both appropriate and fair to my coworkers to explain exactly what was happening and what they could expect from me.
I was able to keep that job until I had to leave it after another year for grad school reasons. I never clocked a less than forty hour week, thanks to being allowed to flex and use sick time, and I maintained full responsibilities.
The lessons here for you writers who want to input disability into your books are many:
If your character is a young or new adult, how do they view their career trajectory? What are the limitations – either real, or imagined?
If your character has dependents, how does the disability affect their feelings about earning an income, supporting their families, planning for the future, etc?
How could you create networks for your character that will support him/her? What unique resources does he/she have to take advantage of? What ones are out of reach, and why, and how does this affect them mentally and emotionally?
What kind of job does your character have and how is this impacted by and how does it impact their disability? If I had had a part time job, a job with no health insurance or sick time, or a job that demanded physical labor, my life would look very different right now – terrifyingly different. How could you use that to up the stakes and tension in your story?
How does your character present themself? Fiercely independent? Secretive about their disability? Open? Humorous or serious? How do they balance the professional with the person in need of help? Do they hold themselves to a higher standard because of it, feel they have something to prove? Or do they let it work to get them out of things?
These are all excellent questions to ask of characters without disabilities, but especially with. If you can ask some of these, even if that information doesn’t go into the book, it’s going to help you round out your character and get a sense of who they are as a person. After all, they say we are what we do – and I would add, how we do what we do.