Ramón S. Barthelemy: Coming out again, this time with a disability

Individuals were eager to accommodate my needs. Institutions, not so much.

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I was already treated differently for being the gay and the Hispanic one, I also didn’t want to be treated differently for being the disabled one.

I have spent my career as a physicist and science policy scholar focused on improving the physics and astronomy community for underserved and underrepresented communities, including women, LGBT+ persons and people of color.

Coming out as queer person in science myself was challenging enough. It shut many professional doors and opened a great deal of others. As a graduate student I faced persistent negative comments, exclusion and behaviors not only from my peers but also professors. From ridiculous statements about what I wore to office hours to a department chair refusing to interact with me or come to my presentations, I thought I had been through it all. After this stage of my career I was always out and proud about being queer, even though it came with costs.

The rewards of coming out as queer, however, have greatly outweighed these costs. I was finally able to be myself, build community with other LGBT+ persons in my field, and it sent me on a research journey of conducting studies that have led to positive policy changes for LGBT+ physicists and astronomers.

As a professional, I never thought that I would have to come out again with an identity, and physical reality, that would also change how I interacted in my career and life.

Starting in my early 20s I was plagued by mysterious symptoms that no doctor could diagnosis. I had weak knees that would slip out of joint and ache in pain, my feet were sore just from standing and walking, I developed a growing list of foods I could no longer eat and I began to suffer from chronic fatigue amongst other ailments.

Over a 14-year period I was mis-diagnosed and mistreated by providers across the United States and in Finland, where I briefly lived. Often I was not believed and once accused of seeking pain killers. I began to think that I could be making this up.

As a new professor, I decided to take advantage of having a university hospital at my finger tips. I pushed hard to find solutions for my increasingly more severe symptoms. Finally, after over a decade of struggle, I got my diagnosis.

It turns out that I have a relatively rare connective tissue disorder called hypermobility Ehlers Danlos Syndrome (hEDS). This was the first time I had ever heard of this condition, and it very neatly brought together and explained all of my mysterious symptoms that had been ignored or misunderstood. Unfortunately, though, there is no cure and very few treatments. I finally had my diagnosis, but I also learned that I just have to live with it.

On the surface most people would never know I was experiencing a debilitating connective tissue disorder, but this changed as I started needing a cane to walk and could no longer go up and down stairs with any kind of ease or safety. This began a forced, and slow, coming out process as people started to see me walk differently both in hallways and the classrooms where I teach. I also could no longer attend many things if they weren’t easily accessible by someone who walks differently and is at risk of falling.

The major difference between this new coming out as a disabled person and coming out as queer was one of acceptance and support. From my supervisor to my students and research employees, everyone instantly understood and was willing to make accommodations and changes so that I could participate fully in my research and teaching. Restaurants always were helpful in finding places I could easily sit, and pedestrians were largely understanding of my slow speed to cross roads and enter buildings.

However, the individual support I received from people could not always keep up with the institutional and structural barriers all around us. When I first tried to use my accessible parking pass at work I was greeted with a university maintenance vehicle occupying the last of two disability parking spots. This wasn’t the first or last time I experienced this.

When I got into my building I had a conference room reserved to meet with students, and this was occupied as well. Not intentionally by someone being against a person with a disability, but someone continuing an academic tradition of not respecting when meetings end. In both cases, when reported, there was no accountability.

It is not just these actions by individuals that have caused me challenges, but also the very physical structures of my work place and the world. The main lecture hall used by many faculty in my department requires the instructor to walk down a large flight of stairs passing by all 200 seats before getting to the front. There is only elevator access if you walk through a basement storage space and have keys to open two locked doors.

As an academic I also have to travel frequently, and the unevenness of infrastructure and accessibility across airports and hotels is daunting. Recently in Boston I had to barter and plead with a rideshare driver just to drop me off at the legal accessible point I had already selected in the app.

As an individual I was accepted for who I was with a disability, but I now had to interact differently with a world not built for or by people like me. Coming out with any identity, disability or otherwise, shouldn’t have to be arduous or a challenge, it should be a joy. Hopefully we as a science community can learn about co-existing with each other in a way productive for personal and professional growth. This includes, of course, both individual actions and infrastructure with accessibility in mind.

(Photo by Mathew Crawley) Ramon Barthelemy

Ramón S. Barthelemy, Ph.D., is an assistant professor of physics and astronomy at the University of Utah.