How (Not) to Represent Turner Syndrome in Media

05/05/2015 03:08 pm ET | Updated May 05, 2016

I can think of only one time when a person with Turner Syndrome has ever appeared on television or in a film. That was in "Clock" an episode from season eight of Law & Order: Special Victims Unit that aired in 2006.

And let me tell you, that appearance was not how the lives of those with Turner Syndrome should be represented in the media.

In the episode 17-year-old Janey, who has Turner Syndrome, goes missing. She looks younger than her age, as many with TS do. But the show goes so far as to say that people with TS are trapped in the bodies of children. Last I checked, if a body belongs to someone who's legally an adult then it's an adult's body, whether or not they look like they've gone through puberty.

Another problem with the way the characters react when they find out that Janey has been taking medicine to increase her sex drive. Janey's mother is the only one who was fine with her taking the medication, because heaven forbid those with Turner Syndrome be sexual beings and express that in a healthy way on our own terms instead of how society, our loved ones, or some deity thinks we ought to.

The only legitimate concern they had was that Janey was involved with a man quite a bit older, and even then that is because she was 17 (which is still past the age of consent) and he was over 18.

They claim that only a pedophile would be willing to sleep with her because she looks to be about 12. That really rubbed me the wrong way. Are we not allowed to have people simply be attracted to us?

Perhaps the biggest insult aside from the misinformation was that they didn't even cast an actress with Turner Syndrome for the part.

People with Turner Syndrome are complicated and contain many layers and multiple identities, just like any other group of people. While we do have social media and the Turner Syndrome Society's annual conferences to keep in touch and find people who have gone through similar experiences, there is definitely something to be said about being able to see a reflection of yourself in popular media.

So, how can Hollywood make sure that the stories of those with TS are told in a respectful, accurate way?

1. Realize that while all people with TS are assigned female at birth, not everyone with TS identifies as a woman. People with TS come in all genders.

2. Acknowledge that while infertility is a sore spot for several people with TS, this is not the case for all of us.

3. People with TS are capable of having sex drives and maintaining healthy romantic and sexual relationships. We are not perpetual children hopped up on hormones that just make us look like adults (though there are some people with TS who are asexual and/or aromantic).

4. For those of us who do identify as women, our having to take estrogen does not make us less of a woman than those who produce it on their own.

5. Do not ever say we're trapped in the bodies of children. We mature and become adults like anyone else.

6. We are capable of being successful academically, but that's not always the case.

7. Focus on the person missing the chromosomes, not the missing chromosomes themselves.

People with TS have incredible stories to share. TV and film need to become aware of that.