John Lee Clark on Enforcing Distance between Disabled People

[jesse_the_k]

In conversation with yesterday's Mingus essay, here's Deaf-Blind poet John Lee Clark addressing forced separation because of deaf-blindness, which he calls distantism:

begin quote
Each form of social bigotry has its distinctive personality and its unique set of intertwining evils. So I would like to dwell on the concept of distantia, or a standing apart, which lies at the heart of distantism. We already have a Protactile* word that describes people who pull away from touch, who refuse to connect. It is an attitude and a behavior. Many hearing and sighted societies prize it highly, and their members seek to maintain physical distance, however thin those margins may be. Their rulers and heroes stand alone--the more remote they are, the more highly esteemed they are. Even when the less privileged are squeezed closer together due to poverty, exploitation, or as punishment, distantism manifests itself in the long lines, tight cells or dubicles, and above all, their being removed out of sight and hearing. For all the hype around its ability to connect the world, technology has often served to isolate people in every other way.
quote ends

https://johnleeclark.tumblr.com/post/163762970913/distantism

*"Protactile" is the DeafBlind way: maintaining constant touch while communicating. An spoken/captioned/signed introduction here:
https://www.youtube.com/watch?v=9GrK3P15TYU
Much more at
https://protactile.org

Comments

[cosmolinguist]

This is so interesting. Reminds me of something I heard about the (British) Queen the other month; she's a really old lady now but there's a rule that no one can touch her, so someone was talking about how weird it was to see this frail older woman walking along, going down stairs or whatever, and thinking if it was a woman on the street or somebody's grandma, somebody would've offered her some help getting around. But because she's the queen, they can't. "Their rulers and heroes stand alone--the more remote they are, the more highly esteemed they are." Indeed.

[jesse_the_k]

Perfect example!

The constant contact would freak me right out. But if it made the difference between truly engaging in communication, I might be more willing to deal with my touch-hypersensitivity and claustrophobia.

[cosmolinguist]

Having always been legally blind, I find touch reassuring. I'm glad my husband feels similar because it means we usually are holding hands when we're walking anywhere. I wish it were easier to do so with other people I'm with, as I tend to have to devote a lot of time to making sure I'm not veering away or bumping into them (it is still really hard for me to do and I bump into people constantly when I'm walking). I know a hand at the elbow is the standard way of guiding a blind person, because it's more impersonal and has less margin for error, but I find that ends up with much more bodily contact, because the person tends to clamp their elbow to their side, which makes me uncomfortable. So I guess I have my distantist prejudices too. :)

I know I don't need it to communicate, of course, but I'd imagine many deafblind people might be used to touch as a grounding, reassuring thing rather than an overwhelming thing.

[wild_irises]

This is, I think, the first communication I've ever come across that comes directly from a deaf-blind person.

I'm of the generation that cut our teeth on The Miracle Worker (which has probably been profoundly attacked by the Suck Fairy in the last 50 years), and also of the science fiction generation that got deeply caught up in John Varley's "The Persistence of Vision," so I've thought some about deaf-blindness.

But both of those came into my life before I had the (always limited) understanding I have now of "nothing about us without us," so this post is extremely welcome.

Protactile!

Persistence of Vision Indeed

[jesse_the_k]

Of such small differences has a deaf-blind protagonist, tho written by sighted-hearing Joanne Greenberg,
http://mountaintopauthor.com/books/of_such_small_difference_1988.html
It's a lot better than TMW.

John Lee Clark writes a lot in English, so is easier for those who are ASL-impaired to appreciate.

Protactile!