Comments on: My friend, in the disability gulag, without support.

By: jennifer

jennifer — Mon, 22 Oct 2007 20:38:18 +0000

I just read this myself and have this to say. I am totally blind and know that the world doesn’t just look down on people who are autistic but people with any disabilities because they do not understand that we are just like them we bleed we have emotions and we can think. keep writing as i can hear i guess i should say you have and i am putting this page in my favorites so i can keep reading or better yet i will get an accessible rss reader and go from there.

By: andreashettle

andreashettle — Thu, 08 Feb 2007 11:47:43 +0000

I’m only now reading this almost a year later, but if your more immediate goal is education I would point you to Amanda Bagg’s http://www.gettingthetruthout.org — a must read for anyone who thinks that people who can’t speak or who don’t SEEM to notice what’s going on around them necessarily can’t think either. But be sure to read the WHOLE THING from start to end. The first few slides are deliberately meant to mislead the reader as to the real message. Set aside maybe 30 to 60 minutes (depending partly how many of the links you follow). It’s worth it.

Also, use the search engine on this site to find Amanda Bagg’s “non-person” video.

This is probably too late for Ann, but in case someone else looks at this wondering the same thing.

By: Ann

Ann — Thu, 30 Mar 2006 21:39:00 +0000

Hi
My apologies – I thought that my email address would show up. So scrap the “email privately”. I didnt want to clutter up the blog with stuff that wasnt considered relevant. I guess my main issue is “how can I convince other staff that people who cant talk DO have brains. ” My favorite saying is “the brain is not in the vocal chords” I will definitely be coming back to this site on a regular basis. THANK YOU for sharing your stories. Its given me a lot of ideas on how I need to change my perspective and also ways i need to change how I relate to “clients”.

By: Ann

Ann — Thu, 30 Mar 2006 21:32:00 +0000

I just found your website yesterday and it has been VERY enlightening. I have been searching for years to read people’s experiences who are
1. have lack of speech or are “nonverbal”
2. spent a good portion of their lives in institutions
3. were classified as “low functioning” or “mentally handicapped”
You know what ? I could find nothing. Everything I found was from the parent or workers point of view.
Doing your blog and showing “this is what I am thinking when I do …. is one super great way of letting the rest of us “normals” understand and be able to relate.
One general question – How do you figure out what the preferred method of communicating is for an adult without speech (especially when any and all types of communicating i.e. FC, communication boards etc are banned ?) If you could (and this applies to anyone out there with PERSONAL experience of going through that ( not being allowed to communicate) please email me privately.

By: Zilari

Zilari — Sat, 11 Feb 2006 01:28:00 +0000

“Where is all the practical help? These are great ideas about us not being defective and all, but what will anyone do for me right now?”

I read your blog entry two days ago, and have been thinking about this particular concept ever since. You are right that the “great ideas” have a long way to go before they infiltrate common thought to the point of effectiveness in prompting positive change. That will be a wonderful day — when that positive change comes about, and I am sure a lot of people such as those in your friend’s position will benefit from it. However, until then, there are people suffering — in institutions, in their own homes under confinement — and not being treated as people, and great ideas about acceptance will not grant them the freedom they deserve as humans. What we really need now are some great ideas about addressing immediate human-rights concerns.

I “escaped” institutionalization at the age of nine, partly due to being lucky enough to have an astute family member who figured out what another family member was trying to do. I have never had the institution experience, but it was quite possibly a near-miss, and when I read about people’s experiences in such places I do not find myself thinking, “But I’m not like them…they wouldn’t lock anyone like me up!”. Instead, I find myself thinking, “They DO lock people like me up. People who were in the wrong place at the wrong time, around the wrong people.”

I don’t know what I personally can do to help people like your friend…however I have been thinking that it might be a good idea for autistic persons, whether we have been institutionalized or not, to write about alternatives to institutions and confinement. The impression I get is that the General Public sees only two options for the developmentall different / mentally ill / etc.: being locked up somewhere (where they can be forgotten about) or “running wild on the streets, wandering in front of cars, and attacking passer-bys”. This is not reality: this is hyperbole, but unfortunately very few people even know that independent (with support, if necessary) living is even possible for those with autism or other developmental differences. All they know about is the hyperbole…the extreme case of someone that needs drastic measures to keep them contained. I might wander into traffic on occasion, but in recent years I’ve had someone there to pull me out. That act of helping me avoid being squished probably also helps me stay independent in other ways. And it’s so simple.

I think you are doing an excellent job toward helping people just by writing about your daily existence. I have been reading your blog for a while now and I am very glad you have decided to share your writing with the world, if only because it is evidence that people “like you” really do exist. People who cannot be categorized along functioning lines. People who are less rare than they might seem.

But your friend still is not free and I do not know how to help in this case. I will be thinking about it, though.