Nothing about us without us has long been the battle cry of the disability community, but frustrated yet empowered activists have started chanting #NothingWithoutUs – a more accurate depiction of how so many of us feel. We owe all the credit to longtime activist, Lawrence Carter-Long*, for starting the latest battle cry, which has echoed across the world, both online and off.

Dominick  and his good friend, actress and activist Maysoon Zayid

I had the privilege of participating in two days of activism at the Lights! Camera! Access! 2.0 Think Tank held in New York City on July 13 and 14th. Monday’s summit was held at NYU, and I spoke on a panel about disability and video games, something I have been passionate about for a long time. Of course, my true passion has long been film. That’s why I studied film in school, and it is why I have been pursuing a career as a filmmaker. I was unable to make it to the second day, due to personal issues, but I was graced with the opportunity to Skype in to discuss disability in the media, particularly film and television.

I have been advocating for nothing about us without us during my weekly twitter chat, #FilmDis (join us at 9 PM ET on Saturdays – this week were discussing inclusion in casting!), and throughout the many discussions I’ve had while presenting on the topic of disability and the film industry. Essentially, what that means is that when films and television series are telling stories about disability we need to be included. I firmly believe that. I don’t think that people without disabilities have a firm understanding of what having a disability entails. Often, so many people are obsessed with making disability something physical or visual to the audience that they largely ignore everything else that disability encompasses. There is a psychological element, in living with disability that can shape our perceptions. Being oppressed, as many with disabilities are, can also have a great effect on shaping how we think and feel, and if you have not experienced that, I think it is hard to understand how this can affect other aspects of a person with a disability’s life.

What ends up happening is that most stories about disability are not very accurate to disability or the disability experience. They end up being a a non-disabled person’s view of what they believe living with a disability is like. This is further expounded upon by casting someone without a disability, who has no idea what life with a disability is like, so they can only go off of the script, the director, and any research they do, which is often not an accurate way to discover disability. These portrayals are often the only experience most people have with disability, so it leads to a lot of confusion about how many of us are treated.

So many people expect those of us with disabilities to be just like the movies depict – living tragedies, harbingers of death, exuberant inspirations, or even super intuitive super crips, simply because the movies shown us to be that way. Few seem to realize inaccurate portrayal accompany Long-term negative effects on the entire disability community. Nobody can learn how to interact with people who just happen to have a disability if they are not regularly seeing disability in an accurate way. Portrayals matter, and including people with disabilities in these roles, as well as making them decision-makers in the filmmaking process, allows for much more authenticity.

However, that is not really our goal in advocating for better portrayals and more inclusion. Our goal is to be included in all aspects of the film industry. We need to be visible, because we are visible in this world. We are capable of performing roles on-screen and behind the camera, and we need the opportunity to prove that. We also want to be included more than just when the story is about us. We are more than our disabilities. We want to be included in stories that are told about women, men, transgender people, of all races, all sexual orientations about mothers, daughters, sisters, brothers, fathers, uncles, aunts, lovers, doctors, artists, actors, directors, painters, activists, lawyers, social workers, free spirits, ministers, religious or nonreligious. We come from all walks of life. These are our stories, so don’t just focus on our disability. If you’re going to tell stories, include us, because we are there in the world. We are participating as active members of this world, so do not keep us out. We are in all of these roles, just like any other person, and we deserve to be seen and heard.

We stand for nothing without us… because the disability community deserves nothing less.

*Update: I was informed by Lawrence that credit for “Nothing About Us” should also be given to my dear friend and fellow advocate, Jim LeBrecht. The idea has been percolating between the two of them since 2009.