Another Coming Out Story

Mardi Gras Fair Day. A disabled woman in a wheel chair. The wheelchair is decorated in rainbow colours. WorldPride
(Photo: Adobe Stock)

I’m writing this on National Coming Out Day, which was established in 1988 by Dr. Robert H. Eichberg, a psychologist and author, and Jean O’Leary, a former nun who founded Lesbian Feminist Liberation, one of the first lesbian activist groups in the women’s movement, and who was an early member and co-director of the National Gay and Lesbian Task Force in the late 1970s.

Eichberg and O’Leary said that “homophobia thrives in an atmosphere of silence and ignorance and that once people know that they have loved ones who are lesbian or gay, they are far less likely to maintain homophobic or oppressive views.”

In an interview in 1993, Eichberg said: “Most people think they don’t know anyone gay or lesbian, and in fact everybody does. It is imperative that we come out and let people know who we are and disabuse them of their fears and stereotypes.”

On this Coming Out Day, I’d like to paraphrase Eichberg to apply that comment to disability. Disabled people comprise the largest minority in the U.S. The CDC says 1 in 4 (27%) of Americans has a visible or invisible disability. How many of those people are in the LGBTQ+ community?

It’s not easy coming out disabled. There’s a massive stigma attached. I first came out as disabled a decade ago on the pages of The Advocate, for which I was a columnist and features writer. 

“Coming Out As…Disabled” garnered thousands of responses, many from parents with disabled kids who were grateful for my message about stigma and closeting and fear of what others would say if they knew someone had a debilitating disease like I do — multiple sclerosis/MS — or that they were on the autism spectrum, as a significant percentage of trans people are, or that they have some other disability that they have felt unsure about sharing.

My disability story changed dramatically on August 26, 2016 when, soon after covering the Democratic National Convention for a national magazine, I was paralyzed. It was a devastating and life-altering event for me and my wife. Over several days, I had been — unknown to me — slowly bleeding to death, a side-effect of a drug I was taking because I had nearly died from a pulmonary embolism a year earlier. Ads for those drugs say to contact your doctor for the side effects of “numbness and tingling,” but by that time, it’s too late — you’re already paralyzed and possibly dead.

I didn’t die, thanks to the trauma team at Einstein. I didn’t get compartment syndrome, which would have necessitated amputation. But I also wasn’t saved from paralysis because the first hospital did what hospitals do in a disturbingly high percentage of cases of women seeking emergency medical treatment: they ignored my symptoms. Once they ascertained over four days that I hadn’t had another embolism (they generally start as a pain in one’s legs from a deep vein thrombosis, which then travels to the lungs), they sent me home.

It’s a lot like in the movies, when the doctors tell you you’re paralyzed. They do in fact stick pins in you to see if you have reflexive pain. You don’t. They could have stuck dozens of pins in my legs and I still wouldn’t have felt it. It’s an extraordinary experience and realization. The dissonance is that you can’t feel touch, but you have significant pain in your paralyzed limbs as the nerves short themselves out. It’s often excruciating. The pain that sent me to the first hospital was so terrible, I didn’t think I would — or could — survive it. Over four days, the pain got worse and their treatment got less. They tried to tell me the pain wasn’t that bad and explained I didn’t need an actual painkiller. 

They sent me home with Tylenol and suggested I “walk it off” and use hot compresses on my legs when I was actually dying as the bleeding from my back spread down into my legs disconnecting them from the messages about walking. Within 12 hours of leaving that hospital, I was taken by EMTs from my house on a gurney, screaming in agony. I came home via ambulance several weeks later the same way. I have only left my house a dozen times in the past seven years since my paralysis, every time to go to the hospital.

Stories of catastrophic injury pop up in the news episodically, often linked to a story of perseverance of some sort. In the disability community, we call this “inspiration porn.” The paralyzed older man who wants to walk his daughter down the aisle at her wedding finds a way with braces and crutches to do so. The teenager paralyzed in a sporting accident manages to get across the stage with crutches and a walker to accept his diploma. Stories like this abound. 

While I appreciate the effort it takes to go through months of grueling physical therapy to achieve this short-term goal, I’d like to see more stories about those of us whose conditions remain unchanged and for whom life is a daily struggle, unmitigated by any support in our communities or even through one’s health insurance.

I would like there to be space for discourse on disability that isn’t narrow and hidden. I would like disability itself to come out in America and allow those who live with it a better, less constrained, less isolated, less stigmatized and less poverty-stricken existence.

In the decade since I wrote that op-ed for The Advocate, I’ve written extensively about disability, including a series for PGN.

When I Google “LGBTQ disability,” many of the stories that come up are mine.

Like many severely disabled people, I am homebound. I don’t have the requisite durable medical equipment to allow me to leave the house without an ambulance. That shouldn’t happen in America, but I am far from alone in this. Like most disabled people, my income is dramatically less than it was prior to being paralyzed, so I can’t afford those things — a stairlift to take me from the porch to the sidewalk, a motorized wheelchair, a retrofitted car — that would broaden my world and open my life back up.

These are just some of the issues facing disabled people in America. In April, I wrote about disability for the Inquirer, noting that Philadelphia has the highest disability rate among big U.S. cities, yet not one candidate talked about curb cuts, mail-in voting, and other needs of our community. Not one moderator of a debate asked, either.

For disabled LGBTQ+ people, the double — and for people of color, triple — marginalization is more extreme. This lack of access to the non-disabled world is oppressive. It’s isolating, it’s depressing, it can make people suicidal — disabled people are far more likely to die by suicide than non-disabled people.

So on this Coming Out Day, I am hoping people will start a dialogue about disability in their family, friend and work circles. If 1 in 4 Americans has a disability, then everyone knows someone who is disabled. It’s time to bring disability out of the closet so that disabled people can have the quality of life we deserve — and have been denied for too long.

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