Label Me Not: Musings on the Complexity of Self Identification

Yesterday, I attended a screening of the movie, "Silver Linings Playbook", and I listened to a panel discussion about how the movie portrayed various issues surrounding disability. One of the most interesting topics that came up was labeling and self identification.

Labeling and self identification are important in any community, but they are particularly complex in the disability community. There are very few other communities where people are constantly told that they need to "prove" they belong. Identification in other communities usually does not involve somebody else diagnosing you. Identification in other communities usually does not begin with somebody else calling you a group member, whether or not you identify as one yourself.

Self identification and stigma is so complicated because it is infused with so much privilege. Real, true, self identification that does not require proof of the official diagnosis, medical documentation, or anybody's word, but the word of the person self identifying is powerful. It takes back the power given to the labels. It says, "this is who I am, because it is who I say I am, not because of what anyone else says." Self identification is powerful because it allows each person to decide how they want to be viewed, it does not force uncomfortable labels onto people. Self identification is powerful because it is about individuals deciding who they are and how they want the world to see them.

One of the complexities of self identification in the disability community, is that self identification as disabled is often not seen as acceptable. People are so often chastised for self diagnosing. We constantly want medical proof so we can know what is really "wrong" with the person. When we get medical proof though, when we get a diagnosis, it is so often used to oppress, and to privilege those without a label, or those doing the diagnosing.

When disability becomes a label given and not claimed, it is very disempowering. When disability becomes solely a diagnosis, everything you do becomes a symptom. Every action has a deeper meaning, and people don't respond to you the way they respond to others. For everything you do and say, people question, "is it because of the disability?" Rightful frustration and anger become "behavior difficulties" that need to be treated instead of a perfectly reasonable reaction to an inappropriate situation. Your competency is always questioned, and you always have to prove that you should have the right to make decisions for yourself.

Stigma comes from a lack of self identification, and from over medicalization. Stigma comes because people look at disability as something bad, dangerous, or limiting. Stigma comes because instead of letting people label and define their own disabilities, we label and define them for people.

Self identification is so important when it comes to disability because it allows people to say, "I am disabled, and that is part of who I am." Self identification doesn't have to do with medicine or treatment, it has to do with claiming your own identity, instead of being identified in somebody else's terms.

Self identification is a huge part of ending stigma. If people would willingly self identify as disabled, if they would come out and say, "I'm disabled, and that's part of who I am," things would change. If people could begin to realize that disability and being part of the disability community is so much more than a medical diagnosis, things would change. If disabled people were allowed to define their own narratives, instead of having those narratives defined for them, things would change.

I am disabled, I claim that identity as my own, not because somebody else tells me I have to, but because I've decided to. My disability influences so many of my experiences that it would be disingenuous to say that it is not part of who I am. I will not prove it by showing you a piece of paper, because I shouldn't have to. It is my identity, and I shouldn't have to validate that for anyone else. I will fight against stigma by saying I am disabled and I'm proud of it. I am so many other things too, but in order to fight stigma I can't be afraid to put disabled on that list. Self identification fights stigma because it takes disability out of the medical realm with words that very few people understand, and puts it into everyday life. Self identification fights stigma because it says, "this is part of who I am, I'm not ashamed of it, and it's nothing to be afraid of."