Stigma Is Exhausting
I’ve spent a lot of the last 2 years at home. It’s been lovely, despite the harrowing aspects of a global pandemic. During this time, I’ve done a lot of thinking about what my new normal will be after the pandemic subsides.
To be honest, a lot of it is still undefined in my mind. What I am doing is taking each situation at a time, testing, and then determining what I will do next.
For example, after successfully working remotely from home since March 2020, I came to the conclusion that returning to a daily commute would be more harmful to my rheumatoid arthritis.
So, I worked with my supervisor to arrange for full-time permanent telework (aside from the occasional in-person meeting or event). I think not having to commute (the physical jarring and exhaustion) will result in helping me to work years longer.
Going out in the world takes energy
It’s a lot of work for me to go out. I’ve realized - during a long time period where I didn’t have to spend that energy - that it was a huge expenditure.
The simple task of getting up, showering, and dressing for most people is an exhausting ballet performance for me, even with the help of my husband. Going slower helps. Not having to dress for others and wearing more comfortable clothing and shoes help.
But there is another aspect that I have often neglected to consider. It’s the exhausting experience of stigma. Having been in my comfortable, well-supported cocoon, I forgot about the daily management of stigma.
Stigma is even more exhausting
I don’t just mean physical accessibility, like missing ramps and broken elevators and elaborate paths to back entrances. I mean the stigma expressed by other people.
Like making a dinner reservation in advance and requesting an accessible, outdoor table, and showing up on time to wait 30 minutes while others were seated ahead of me because the restaurant didn’t save an accessible table despite having my reservation and accommodation noted. My husband was furious, but I was exhausted.
I realize I just don’t have the energy to constantly fight stigma. Who does? But I was more used to it in the before-times. Somehow, I had it in my daily energy reserves.
But now, I don’t want to bother. I don’t want to spend my precious energy that way. But I also feel that I have no choice.
Going out in public is a strong way of fighting stigma
If people with disabilities and conditions don’t go out into public and fight the stigma, it will slowly (or quickly, actually) get worse, like I feel that it has during the pandemic.
I’ve already written that I feel accessibility has declined during this time due to the lack of constant battles. People seem to "forget" that accessibility is required by law, and also good ethics. Frankly, it's also smart, since we have an aging population and so many people eventually need accessibility.
It now feels like an active pressure every time I go out in public. The staring eyes on my wheelchair and bent joints. I have seen people move further away, decline to engage me in conversation, turn their backs. My husband has noticed as well, even wondering during the height of the pandemic if some people thought I might be a bigger risk as a potential carrier.
It’s easier to pretend people like me don’t exist, that we’re not human and don’t need to be treated as fellow people when we can be ignored, forgotten, put away.
Disability stigma is growing
In my experience, the fear of disability not only persists, but it has also grown.
Like the dust bunnies under the bed, this fear has flourished in the darkness of the pandemic. It’s a fear of disease, of difference, of the weakness in our human bodies. It can only be fought by bringing it into the light and showing that disability may be different, but it is still a natural part of human life.
Being thoughtful about when and where I go out
With this in mind, I know I need to make myself go out (carefully, with the proper precautions) and reserve the energy for the drain of stigma. Plus, there are simply too many things in life I want to enjoy – a good meal, a concert, etc.
It’s going to happen, so I need to choose these occasions thoughtfully and carefully. Will the dinner or event be with people I enjoy? Can I muster the energy to confront the stigma and sweep it away like the cobwebs creeping in the corners?
I will be going out into public less to conserve my energy and maximize the impact of the effort. But I will be thoughtful in doing so.
Has having RA put a hold on your ambitions?