Disabled Talk

(TW: Ableism, Medical Abuse, Neglect, ED (Weight), Ableist Language) The other story from a ‘Pillow Angel’ Been there. Done that. Preferred to grow.

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I’m sorry this response is so late, by the way.  I posted it in drafts by accident instead of the queue and just found it!  Please feel free to right in anytime to vent <3

towearoutaday-deactivated201206 asked: Especially for the post about asking for special aids or missing school, can you include things like epilepsy, CP, Parkinson's (yes, younger people can have Parkinson's) since I do a lot of volunteer work and surprisingly those of us with neurological disorders tend to not be as vocal. When I was at LSU, the guy in head of disabilities said, "people with epilepsy never come to ask for accommodations and I don't know why." I would really appreciate more posts geared toward the neuro side.

Thank you for writing in!  I’m going to take a look over the next few days and see if we can cover that a bit better.  If there’s anything you’d like to see posted in particular (or anyone else) submit & we’ll put it through.

Also, if it takes a bit longer, your patience please - as I wrote the mods are having a bit of a time right now, but I’m going to try & get some resources out that as soon as possible!

Thanks again c:

On Communicating (tw: dehumanization, institutionalization, abuse, neglect)

Some things to think about on the various ways in which disabled people communicate, especially the attitude that people who don’t communicate in a way that able-bodied people expect are incapable of understanding anything at all.

This is an excerpt from the memoir of a woman with cerebral palsy who’s unable to speak or write to communicate, on talking with another woman with cp:

After several days Theresa and I let our defences down and stopped sneaking looks at each other.  We began to gaze steadily at one another, making sounds to enhance the process of becoming acquainted…As we became more comfortable, we began to “talk” to each other more and more through sounds and facial expressions.  Before long we were sharing our opinions and feelings about living on the ward.

Suddenly a remarkable spark passed between us, something that no one watching us would have been able to perceive.  Theresa and I experienced it simultaneously: a riveting, deeply moving flash of complete understanding.  At that moment we became aware of the extraordinary insight we shared, knowledge that no one who was not just like us could possess.  Both of us were painfully aware of what it was like to be trapped inside a body that followed few directions of its mind and ignored the simple commands of speech and movement that nearly everyone takes for granted.  We knew what it was like to be unable to express even one thousandth of the thoughts whirling inside our minds; what it was like to be unable to walk, or even feed ourselves; what it was like to be treated by most people as an oddity, a quirk of nature to be gawked at and given a wide berth; and what it was like to live on Ward 4 of the Infirmary at the Belchertown State School in 1962.

As our mutual recognition of that knowledge emerged, our souls embraced…Then Theresa turned her head and nudged the yellow teddy bear lying beside her pillow.  Making quiet, gentle sounds, Theresa repeated this gesture several times until she was sure I understood her.  By indicating her teddy, the only object of affection around her, she was telling me that she liked me very much, that she was beginning to develope a profound understanding of me.

At this, my face lit up in delighted verification.  I responded with loving sounds of my own, and raised my eyes in an emphatic “Yes!” tio make sure Theresa understood that I felt the same way about her.  At that instant Theresa figured out what none of the staff would decipher for several years: that I raised my eyes to say yes.

I Raise My Eyes to Say Yes - Ruth Sienkiewicz-Mercer and Steven B. Kaplan, pp. 63-65

Another example comes from an excellent book on early childhood trauma and neglect.  Peter was raised in a neglectful orphanage for the first three years of his life, in a crib 24/7 with only 15-30 minutes of human contact a day in the form of feedings and diaper changes.  Because of this neglect, he didn’t develope at the rate of most children, and hadn’t been exposed to language from an adult.

However:

With no one but each other to turn to, the children would reach their tiny hands through the bars into the next crib, holding hands, babbling and play patty-cake.  In the absence of adults, they became parents to each other.  Their interaction, as impoverished as it was, probably helped to mitigate some of the damage such severe deprivation can cause.

When Peter’s adoptive parents first brought him home, they discovered that he was trying to communicate with them.  Delighted, they sought a Russian translator.  But the Russian translator said his speech wasn’t Russian-perhaps the orphanage workers had been immigrants from elsewhere in Eastern Europe who had taught the children to speak their native tongue?  A Czech worker said it wasn’t Czech, however, and soon Amy and Jason learned that Peter wasn’t speaking Hungarian or Polish either.

To their surprise, they found that the words Peter spoke didn’t belong to any known language.  Apparently, the orphans had developed their own rudimentary language, like the private speech of twins or the improvising sign language of deaf children raised together…on their own, the children had apparently created and agreed upon several dozen words. One word the translators were able to figure out was that “Mum” meant “adult or caregiver,” just as similar sounds mean mother in almost every known human language, since the “mm” sound is the first one babies learn to make while suckling.

The Boy Who Was Raised as a Dog: And Other Stories From a Child Psychiatrist’s Notebook - Bruce D. Perry and Maia Szalavitz, pp. 218-219

Just because someone isn’t communicating the way you think they should doesn’t mean they aren’t.

(tw: dehumanization, ableism) Lives worth living

When you’ve spent as much time as I have with people who have been totally rejected by society, when you have been written off by nearly everyone you around you, it becomes very difficult to draw the line at which life is no longer worthwhile.  I choose not to draw that line at all.

-Ruth Sienkiewicz-Mercer,I Raise My Eyes To Say Yes