words

[mellowtigger]

Communication is an odd activity. I still need to write someday to explain what I want to accomplish eventually by walking into the forest. Leaving words behind is an important part of it. People who are said to be "profoundly autistic" are usually mute. Some eventually find a way to present themselves using an electronic device as their voice. Here is some sample writing from people who, in times past, would have been abandoned as incomplete humans.

David Eastham published in 1985 the first-ever account of writing from an autistic adult. He couldn't speak, but he wrote using a "Memowriter" device. His texts are all-caps, because that's what the device produced. After his death, his mother published another book with photos and more of his poems.

HOPES AND DREAMS

SO MANY DREAMS IN
PEOPLE'S HEADS
LOVE TO SEE THEM FLOAT
CORRECT LONELINESS
BEST THE WORST MEN
GOT LOVE FOR PEOPLE
DISTANCED BY
LONELINESS
EVERYONE LOVED
PROPERLY IN GOD'S HEAD
HOPES AND DREAMS ARE
SENT BY THE LORD TO
HELP PEOPLE KILL TIME
UNTIL EVERYTHING
WORKS

Sarah Stup published in 2007 a book of her own poetry, "Are Your Eyes Listening?"

Inside world

We want to be with you, but your
ways are not our ways. Your world is
not the same for us. We must create
another bearable world inside your
world that allows us to breathe--an
inside world that protects us from
pain of exposure. With this inside
world comes peace, but sad and
lonely times too.

Birger Sellin uses facilitated communication to get his words out. He published his works in 1995, "I Don't Want to Be Inside Me Anymore: Messages from Autistic Mind".

hindrance people

now i am going to write a song about the joy of speaking
a song for mute autistics to sing in institutions and madhouses
nails in forked branches are the instruments
i am singing the song from deep down in hell i am calling
out to all the silent people in this world
make this song your song
thaw out the icy walls
make sure you aren't thrown out
we will be a new generation of mute people
a whole crowd of us singing new songs
songs such as speaking people have never heard
of all the poets i dont know of one who was mute
so we will be the first
and people wont be able to shut their ears to our singing
im writing for my silent sisters
for my silent brothers
we want people to hear us and give us somewhere
we can live among all of you
live a life in this society

I had mind before I had words.  That mind was unstable, though, when trying to live in this social world.  I rebuilt myself into a more durable form, but I lost earlier abilities during the process of remaking.  I hope to get those skills back someday, though I expect words to be the price I'll need to pay.  Years from now, when T'Reese no longer needs her kibble, I'll have the freedom to risk the search for former self: the child who wandered off inappropriately, sometimes didn't hear people speaking to him, rarely spoke back, and whispered his thoughts in a soft barely audible form.

Comments

Powerful stuff

[arkanjil.livejournal.com]

as an aside, do you have an opinion on the viability of facilitated communication? I only heard of it peripherally, but uit seemed to be a contentious issue, tho powerfully intriguing to me...

Re: Powerful stuff

[mellowtigger]

More than once, I've been around people using voice-type devices. What I know of facilitated communication, though, is only from watching various videos (both online and old-fashioned).

Yes, it is contentious, and watching it in action doesn't really solve the questions it raises. It looks like Ouija board nonsense, as if someone is pushing while seeming to merely touch. As I imagine it in my mind, though, it's a way to overcome what I call the "inertia" barrier. The idea is that by supporting and moving the person's hand/arm, the autistic person can then make the smaller adjustments in choosing direction rather than the bigger adjustments of choosing to move at all. Once committed (by the facilitator) to the action of choosing words on a page, the autistic individual is able to choose the proper words that they want to express.

That's the idea anyway. Until someone raised with facilitated communication makes the jump to type-voice machines, though, it's hard to judge for certain. Audiences need an eloquent self-expressive person to comment on their assisted-expression experiences.

Re: Powerful stuff

[mellowtigger]

I just ran across this review of the scientific literature on facilitated communication. It basically says FC is a worthless treatment regimen, although the studies it cites are more than a decade old. *uncertain shrug*
http://www.asatonline.org/resources/treatments/facilitated.htm

[otterlover01.livejournal.com]

I didn't know about those writings. Looking closely at what the words say it looks that these are two paralell words running but the joys and pains seem so similar in the end. Thank you for sharing al of this Terry. Big hugs, Luis.