Making Disability Visible

So Disability Pride Month ended yesterday. I didn’t even realize it had begun. I did realize that the Americans with Disabilities Act (ADA) was celebrating its 30th birthday because I did too this year. Disability Pride Month is an annual celebration that Americans with disabilities have at least some rights now.

In theory, I’ve always lived in a world with rights but sometimes it’s hard to see that. Case in point, despite my online exposure to disability issues, I didn’t even know there was a pride month for disabilities.

A part of that is that people with disabilities are less visible. Not only do many of us have invisible disabilities but as a result, we get out less than able-bodied people. We have trouble marching and protesting in person. We are underemployed. We get shut out of regular employment because it’s not flexible—it’s hard to get enough sick days or time off for appointments during work hours or to get reasonable accommodations.

The ADA mandates that schools and employers provide reasonable accommodations but “reasonable” is up for debate and negotiation. The pandemic has made it clear that for many many jobs, remote employment is a reasonable accommodation. Yet, it’s still rare for many jobs and often offered as a perk or a benefit that you have to sacrifice other perks for—like insurance and solid pay.

I’ve made these sacrifices in my own work life. I do different types of contract work so that I can attend appointments during the day, take days off when I have migraines, and work from my couch (often on a heating pad). I’ve had to call in sick to recover from overwork and wait out a pain flare.

It’s ridiculous how many disabled workers out there must make these trade-offs when we now know that working from home is incredibly doable and for many it’s not a perk—it’s necessary or they hate it. I’m sure many able-bodied people miss the office, the classroom, the library, and the coffee shop. I’m not one of them. I could never work well in those spaces. I tolerated them as long as physically as possible.

If for no other reason, that is why we need a Disability Pride Month and we need it to be highly visible. We need to learn about disabled teachers, leaders, activists, doctors, entrepreneurs, and designers. One thing that the Civil Rights, Women’s Rights, and Gay Rights movements all teach us is that representation matters.

And that it doesn’t matter if someone needs to take time off for health reasons—it doesn’t make them lazy or bad employees. People with disabilities often are really good employees because we’ve had to work through a lot of things and struggle for access to education and employment.

If we’ve had employers that allow some limited accommodations like working from home occasionally, we still have to worry about our colleagues describing that as a day off or talking about sick time as vacations. Working for a non-profit that helped people with disabilities get jobs, I had to negotiate a work from home day once a month to deal with my extreme menstrual cramps that prevented me from walking and sitting. Even though the organization’s mission was disabled employment, I still had to deal with male colleagues who were jealous that I got to work from home those days.

I would have traded places instantly if that meant not having menstrual cramps that made me burn myself with a heating pad. Why people think getting accommodations means getting extra perks or having fun doing nothing, I will never understand.

These experiences do make me more understanding of others’ needs—health and disability-related or otherwise. In my work, I’m flexible when I work with people with disabilities because so often the world isn’t flexible or accommodating. Too often we have to make a decision between cancelling last minute and paying for the doctor’s visit, bodywork appointment, therapist session, exercise or language class, or the hundred or other commitments that require 24 hours or more for cancellation.

One of my commitments is to be supportive in own work—teaching and editing—to model how to be understanding and supportive of others. I’m learning how to do this because I have several excellent and wonderful models of my own who have used their experiences with disabilities to inform their practices.

This is my continued commitment. Hopefully, as the ADA continues to age, more of these practices will be commonplace and require less individual grace from those with personal experience. Although it’s too late to celebrate Disability Pride Month this year, we can still celebrate National Disability Employment Awareness Month in October!

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