As someone who adamantly seeks to find disabled characters in comics, books, films, and TV shows, having appropriate and empowering representation matters poignantly so that our lives and experiences are displayed in their authentic forms.

It was during a recent podcast interview I did for a comic book enthusiast that we discussed the characters that resonated with us as blerds (black nerds). Particularly, I was asked about disability representation in media, and my thoughts of what was good, bad, and needed to be improved. There has been emotionally-charged discussions lately about appropriation of characters who represent marginalized identities, and disability is an identity that has had its fair share of representation that were full of tropes, lackluster, and downright offensive.

When it comes to disability representation, so many factors get in the way of characters and storylines resonating with members of the community and capturing how diverse we are. An issue that cannot be dismissed is “cripping up”, which is when a non-disabled actor plays a disabled character. On the small screen, there are two disabled characters I enjoy dearly that represent my identities, yet are played by non-disabled actors: Garrett from Superstore and and Ivar the Boneless from Vikings. Garrett is a Black man in a wheelchair who works in a major chain retail store, and Ivar has my disability, Osteogenesis Imperfecta, and is a vicious Viking. It is not every day where I see disabled people of color and characters with my rare disability represented on the small screen; yet the representations are not fully authentic because of the cripping up. That leaves me (and others in the community) in a bittersweet space of wanting to celebrate that these characters exist; however, not being able to ignore the problematic nature of their image through the casting decisions made.

Even when the representation is appropriate, the lack of diversity and hesitation to explore the person’s disability story falls flat. One of the biggest breakout shows this season has been the comedy Speechless, which features JJ, a disabled teen played by an actually disabled actor. Making such a casting decision should be the norm and not the exception to be celebrated. Though JJ’s character is good representation, it still portrays the disabled experience that is typically illustrated regarding disability – white male characters and perspectives. There are many disabled characters of color and of various gender identities whose storylines deserve a chance to be seen widely, especially for those who can relate to them. One of the characters I enjoy is the Marvel superhero Misty Knight. Misty is a Black disabled woman, and became disabled after losing her arm while working for the NYPD. Misty represent me – a Black disabled woman with a visible disability. One of the critiques I have about Misty’s story in the Marvel universe is the failure to allow her to explore being disabled, and embracing her disabled experience further. Some of the reluctance may stem from Marvel creators not knowing how to broach this aspect of Misty’s identity in a way that is not self-pity driven. There are disabled people, young and old, comic book readers and not, who would greatly benefit from Misty’s journey to embracing her disabled truth and can relate to the struggles she encounters along the way. Providing that depth of analysis will validate the complexities we have with being disabled; it will normalize that what we endure and lessen the feeling of being alone in our struggles of self-acceptance.

This brings me to my key point: in order for disabled characters, whether in books, comics, TV, or films, to be authentically portrayed, we need actually disabled people consulted, writing, producing, directing, and casted to tell our experience the way it should be. The severe detachment in allowing disabled characters to go from one-dimensional, problematic depictions to being humanized and realistic is greatly due to us not given the space to be a part of the creative development and producing of them. “Nothing about us without us” is the mantra proudly proclaimed in our community about ensuring that we are at the forefront in the way disability is understood; representation in media fits under this umbrella. Characters like JJ from Speechless being played by actually disabled people has to become the permanent standard; the erasure of disabled perspectives and involvement in the creative process does incredible damage to our community. It fails to support the disabled artists, writers, and actors who want a seat at the table, and yet, are considered an afterthought for these entertainment projects. Nothing about us without us means that if your project does not have disabled input within its development, then it will continue to fall short and be rejected by the community.

In 2017, there is no excuse to not have better representation of disabled characters. We are an important entertainment consumer market that should not be forgotten, and the responsibility to have accurate portrayals that will demolish misperceptions about our existence is indeed great.