Of all the plays in the world, the one I hold dearest to my heart is The Normal Heart. Maybe it’s because the issue of LGBT activism is so important and personal to me. Maybe it’s because the play written by AIDS advocate, LGBT activist, and playwright Larry Kramer features one of the most compelling female characters, who just happens to be in a wheelchair. Whatever it is, I waited with baited breath for the announcement of who Ryan Murphy was going to cast in the role of the dynamic Dr. Emma Brookner.

Julia Roberts dressed as a 1980s Doctor, in a wheelchair though the chair is not visible.

In my days before transitioning, I was heavily involved in acting. I was given the coveted role of Dr. Brookner, in a Wright State Jubilee theatre production of The Normal Heart. It is a role that, even as a non-binary person now, I am not ashamed to say I relished playing on stage.

This one woman was so compelling.

This one role had little to do with disability and yet it said so much about our culture. Dr. Brookner works tirelessly to get the CDC to take the AIDS epidemic seriously.

This one woman is the entire voice of the patients who are dying of this mysterious and unknown illness, in this film.

She represents the few doctors who gave a damn in the 80s, to care enough about the gay men and eventually women and children who contracted the virus. They cared about them spreading it and dying from it. This woman single-handedly takes on the entire stigmatization of the AIDS epidemic and demands justice and help for these men. The fact that she is in a wheelchair is empowering to those of us with disabilities who are so often left on the sidelines to play the dying cousin or the sibling whose disability impacts the protagonist’s life in a variety of ways.

Too often disability is used as a plot device. However, this is not the case in The Normal Heart. Ryan Murphy had the most amazing opportunity and he blew it. Those of us in the disability community are growing tired of our lack of representation of authentic disability in film, television, and other media. We are sick of nondisabled actors playing disabled characters. It continues to precipitate the myth that disabled actors are incapable of playing roles in Hollywood.

Can you name more than one incredibly famous actor or actress in a wheelchair?

Can you name a handful of actors who have significant fame due to their disability?

Our community is lucky enough to have Peter Dinklage, who I believe other than Marlee Matlin, is our most famous disability representative in film and television.

The small screen has seen the inclusion of actors like Geri Jewell, RJ Mitte, and Jamie Brewer, but the numbers are few and far between. These actors and actresses also do not get a lot of opportunities to audition. Geri Jewell has said many times she has gone on fewer auditions than the number of years (around 30 years) she has been in Hollywood. That is disgusting. It is not fair. It is pathetic, but it emphasizes the problem, perfectly.

Recent, estimates put the number of disabled people at 1 billion worldwide. You are telling me in 1 billion people there is not ONE who has the ability to act as well as any of the nondisabled actors getting roles? Not one? I simply cannot believe that, but we are not seeing anyone of this caliber getting the opportunities nondisabled actors have. Someone is out there, I am certain, but they simply have not been given the opportunity to prove themselves, for a variety of reasons.

I digress. Ryan Murphy had the opportunity to discover a great actress who is a wheelchair user. Instead, without even auditioning any wheelchair using actresses, he offered the part to Julia Roberts. Roberts has stated that she originally turned down the role of Dr. Emma Brookner, because she didn’t believe she had the skills to accurately portray the character or her disability correctly. She only accepted the role after “watching a documentary” on polio.

As Roberts said, “It unlocked the door to who this woman is to me and where her ferocious pursuit of correctness comes from…”

Without consulting a single person with polio, she unlocked what she thought was the key to the character, based on a documentary she watched. Murphy and crew did not even consult a person with the disability portrayed in The Normal Heart. Consultants are great, but we desperately need disabled people being allowed to tell our own stories – our first person perspectives are invaluable. This is why the vast majority of portrayals of disability in the media get it wrong. They are not offering an authentic representation of disability. They are offering a nondisabled view of what they think disabled experiences and life are like.

This is harmful to the disability community for a variety of reasons. Society dictates how it treats marginalized communities based on what it sees in the media. Media depictions have a HUGE impact on everything from how people treat us to how likely we are to get the services we need. If Congress and other lawmakers only see inaccurate depictions of disability, they begin to believe this is what disability is like, and it may deter them for voting for essential services that keep those of us who are disabled independent and self-sufficient. The right portrayals of disability in the media could create an environment of empathy and understanding in our society that we so desperately need.

Julia Roberts was given the role for her star power. It wasn’t needed. Murphy already had big names like Mark Ruffalo and Matt Bomer. He would have had people watching. This is Ryan Murphy. His name, alone, gets viewers. He shot himself in the foot, and the disability community right along with it. What a shame, because this was the perfect role for a wheelchair using actress to play. It was our perfect chance to introduce one of our community to Hollywood, and now that chance is gone.

Look, when it comes to film, I am all for choosing the best actor or actress for the role, but I’m also of the firm belief that minority communities deserve to be given a chance to represent themselves.

It has taken years for other communities to have the harm the media creates towards their communities recognized (and in many cases is still happening for some communities). I have hope that one day we will see similar strides in the acceptance and casting of disabled actors.

As a filmmaker myself, I understand that you want to pick the best actor for the role. But I don’t believe that nondisabled actors have the nuance or understanding of disability or disabled lives to get the job done in ways that don’t create harm. Disability is NOT something you can act. FULL STOP.

I’m asking filmmakers and television producers to give disabled actors the chance to audition for the role – any role – they can play whether depicting a disabled character or not. We aren’t even getting an invitation to the table.

Hollywood portrayals of disability continue to suffer until we do.