I’m at the NYLN “Reap What You Sow” Institute right now. Being in a Disability space is so, so awesome and unbelievably energizing. The diversity here is INCREDIBLE. Too often, I attend or see conferences that ghettoize various aspects of or types of disability, or create a sense of separation between different types of disabilities. Here, that sort of barrier is broken down- but it also makes me realize how much of a barrier we have out in the world in general.
One issue that struck me was visibility vs passing.
Sometimes, people’s disabilities are visible, but but obscures their person-hood and the fact that it is MORE than just their disability involved in their lives. When our disabilities are obvious, we become tokens, emblems in a logo (as some very wise women who can claim the concept said). We become the wheelchair user in the ADAPT logo, or the stereotype on our TV.
And while visibility is good, it is not helpful or useful- maybe not even good- if it denies our personhoods, our individuality. When we become a symbol rather than a person, a stereotype instead of an individual, and regardless of the other factors and aspects of identity we have our perceived identities wittled down to the most obvious factors of our lives.
Then there is Passing- when our disabilities are the sort that we can “look” normal. We pass as “normal” in a culture that oppresses us when we allow our true selves to show.
Before I go on, I want to bring in a little history (the geek in me insists) on the term “passing”. The most recognized form of passing is racial passing- there are many many stories out there of people who were of African American decent who- because of light skin or more European features- presented themselves as white. You can read some more about racial passing in an article at racematters.org. There are other types of passing- Jews passing as Christians during the Inquisition and Holocaust, queer people passing as straight, even people passing as a different political party. There’s a great article called “Privilege and Transphobia” that is very interesting, and has a lot of points that apply to lots of different types of passing.
(In case you need that simplified:) Passing means to take on the presentation of yourself as something you are not. Most times, people do this in order to avoid the oppressive factors in their communities.
I see this so, so much with those of us with invisible disabilities. We strive to achieve that old IEP goal of becoming “indistinguishable from [our] peers”, to pretend “normalcy” in order to belong. We deny essential parts of ourselves in order to resemble ideals and stereotypes of our cultures. And society rewards us in various ways when we succeed- we get leadership roles, sit on committees, and are granted privilege. Even when we don’t quite pass, society grants us recognition by engaging us as their tokens, or by using us for Public Liaisons.
The privilege difference does create a conflict in our community. Those who pass end up getting leadership positions and groupies (be they parents or peers), while those of us who don’t are still feared.
But the underlaying cause is the same, be we reviled or fetishized. Those who revile us in our visible states don’t admire our relatively invisible ones- instead, they use us as a shield against their fear of the disabled.
I see a clear example at ASD or mental Health conferences a lot. A parent comes up to a presenter- or even me- and these words come out of their mouths: “Wow, you are such an inspiration/have endured so much!!!”
Now, I am no good at “getting” people in real time. I spend a long time processing it and building logical conclusions based on the info I have available, so it is totally possible that I have it wrong. But I believe that far too often, this is what they mean: “Wow, so I might not always feel revulsion when dealing with my son/if this happened to me, I might be able to pass or pretend it never happened!”
It might seem harsh. But if you say “her reasoning is that she just wants to hope her son gets better/be inspired” then you have to ask: why? Why is it so important to “get better”? Why do you find this inspiring? Too often, what I mentioned above seems to be the reason at the core.
I do not know what suggestions to make about this beyond the following:
If you are “invisible”, if you pass, take some time not to. Increase that time- be visible. don’t allow yourself to restrain who you are out of fear that someone will know that you are disabled. Don’t let people tell you that you must try to conform, that the only way you can go is to pass or to pursue indistinguishably. Work instead on what is important to you and your life and inde-and interdependence.