Astrid’s Journal

I found out that the next Disability Blog Carnival will be about disability identity and disability culture, and I don’t know what to write about. Oh well, in fact, I could write many different posts, and I think I’m going to. Not just as a way of contributing to the carnival (after all, then there could be an entire carnival just for my posts), but as a sort of self-explorative project. You see, I have many questions relating to this subject, and have long been thinking what I would be doing with them. Now I remember that, in 2004, I had a sort of journaling project around Dean Tuttle’s book Self-Esteem and Adjusting with Blindness, and I could do a similar thing.

First off, let me examine what relevance the terms “identity” and “culture” have in light of disability. Disability culture is often referred to as the disability rights movement, but what if you happen to identify as disabled but are not particularly active within the disability rights movement? Is identifying with a particular adjective (eg. disabled) the same as belonging to that culture? And does wanting to belong to a certian culture require that you adhere to that culture’s majority opinion?

Let’s look at other sort so cultures and identities. Ethnic identity for example. In the Netherlands, there is an ongoing debate about whether muslims are part of Dutch culture. Geert Wilders, a radical right-wing politician, at one point wanted (and I believe he still is of that opinion) to replace the constitunional part that prohibits discrimination with something about our Dutch culture being grounded on judeo-christian and humanistic principles. So that would mean that muslims are not part of Dutch culture anymore. Yet many muslims very strongly identify as belonging to the Dutch - and no-one would legally deny them this right, especially if they have a Dutch passport. But are they still “real” Dutchmen if they choose to remain professing muslims?

Within the various disability communities, there is a similar connection between identity and culture and between culture and political or philosophical opinions. Deaf culture, for example, includes the use of sign language and, often, a strong position against cochlear implants. With other disabilities, major associations of people with that disability dictate what their specific disability culture should be like. For instance, the loudest voice within the blindness community is that of the NFB, which calls out for the use of braille and cane travel and the belief that blindness in itself should not limit a person’s ability to achieve the same goals that sighted people reach. Autistic community, at least internationally, is a little more inclusive, in that those who don’t live independently and those deemed “low-functioning” can still be part of it. Even so, I still feel a little paranoid about the way my fellow autistics will think of my having been hospitalized for half a year now and having failed independent living despite having had lots of support - while many autistics have to survive without any support. The Dutch autistic community is more exclusive. I refuse to join the autistic self-advocacy organization here, because, in my opinion, it discriminates against “low-functioning” autistics by welcomign those with at least average intelligence only and making all sorts of attributions about them that have nothing to do with “functioning levels” whatsoever. Can I still identify with the Dutch autistic community even if I emphatically do not agree with the majority opinion held within that community on certain issues?

Of course, a community needs some core beliefs to build itself around. About a year ago, I was criticizing Autistics.org for presumably claiming to be the real voice of autism, and Amanda Baggs corrected me by saying that they meant to claim that autistics are the real voice of autism, as opposed to parents. Even so, they wouldn’t post an article from an autistic person who happens to want to be cured.

However, even if a particular disability culture excludes you, or you feel alienated from that disability culture, can you still claim disability identity? I’m not sure whether the autistic community still wants me, given the fact that my current life is so contradictory to what autistics are wanting to achieve (and I still want, too), and I certainly don’t belong to blind culture, due to my way too dependent living situation. Can I then still identify as blind and as autistic? I certainly do identify as both, in that I accept that both characteristics are part of who I am. But I must say, I identify more as autistic than as blind, due to the fact that the autistic community relates more to my experiences. I used to be far more active on blindness support lists, but always felt very much alienated from everyone else on those lists. I at least so far don’t have that feeling (or only a little bit) on autistic support lists, but maybe I will if they all decide to lecture me on how I should get to know autistic role models who live independently and have familes and hold down jobs and wouldn’t be hospitalized if their life depended on it (unless a shrink thought so as well and had them committed involuntarily for safety reasons, of course) - which is pretty much how the blindness community drove me away a few years ago.