Expectations

 

 

Sitting at the top of the bleachers in my elementary school gymnasium, I had a small sheaf of papers laid out on the seat behind me and a pack of crayons. I was illustrating a very vivid story that was running through my mind: a horse with wings, a girl with a sword, and a  hidden cave accessible only  by swimming through a crystal clear lake. My reverie was brought short by a voice from below.

“Hey Angie, can I color with you?”

I stopped and looked down to the boy who had spoken.  Peter, his name was. Asshole. Fifth graders didn’t “color” with each other.  He was trying to impress the two girls seated next to him. I turned my back to their giggling to  finish my project.

Peter was the kind of boy who made every team, got called on by teachers and was given awards. He was a student that everyone knew. He was fawned over, exemplified, and …significant.

I was invisible.  I had friends. I was not disliked by teachers. I just didn’t matter in the grand scheme of the school culture.  I was tired. My life was chaos. I didn’t have nice clothes or extracurriculars or parents with money, or parents who were present, for that matter. I was hauled in and out of special education, and if there was a rhyme or reason to that process it was unknown to me.  I was a quiet child,  not a behavior problem, unnoticeable.

I would imagine that the contrast between Peter’s education and my own was stark. The clubs, accolades, and opportunities must have been a buffet to feast his mind on,  and probably, his ego. On the other hand, for me school was a place to survive until I could go home to do what I really wanted.  Be outside. Draw. Let my mind carry me on adventures uninterrupted by ringing bells or annoying classmates.

But the point is not to vilify Pete or others like him, but rather to point out that some things in my life could have been different, and possibly made a difference in the way I experienced school.

Being pulled out for “services” was and still is in many places, common. It can also  be stigmatizing. To qualify for such services, your deficits must be documented, quantified and labeled . I can remember the notes on my report cards  that said I  did not pay attention or participate in class.  Did my  “record” influencesad studenst the lack of interaction I received from teachers? Did it influence where I was seated and what opportunities were given to  me?

While those questions may not be answerable, research has shown that teachers are influenced by the labels students carry, and that it affects students education.  What influence does this labelling have on parent expectations?

I can see the effect that expectations have had on my own children in vivid detail. One of my sons looks terrible on paper.  A plethora of diagnoses followed by stacks of tests with alarmingly low numbers presents an image of ineptitude, incapacity and incompetence. The real person, however, is a different story.  Possessing a strong moral center with a somewhat irreverent sense of humor, impeccable manners, strong work ethic and boundless curiosity, he is both pleasant company and an asset to any setting.

I am often put in the position of having to focus on my children’s deficits in order to obtain services that are supposed to help them reach their potential, but If image effects expectations, and expectations influence performance, then the time has come for parents and educators to turn their focus on helping children showcase their strengths to obtain the desired outcome of thriving students and meaningful education.

Advertisements

Echoes of Atalissa: Federal agency sues bunkhouse owner for exploiting mentally disabled workers

crumbsIn September 2016, the EEOC sued Byrd’s company, Work Services Inc., alleging it had forced its intellectually disabled workers to live in a crowded, substandard bunkhouse, paid them “unconscionable wages” that were less than what nondisabled workers were paid, and subjected the men to a hostile work environment in which they were called “stupid,” “retarded” and “dumb.”

Over the past year I have slowly been making my way through Dan Barry’s The Boys in the Bunkhouse.

The author tell some of the history of the rise and fall of  State Institutions in Texas and how the financial and physical exploitation of so many intellectually disabled adults became not only easy but desirable for companies, the specifics of which surrounded Henry’s Turkey Service and the men that were kept in servitude in the small town of Atalissa. This book  also provides an education about the practice of paying sub-minimum wage to workers with disabilities.

Advocates for sub-minimum wages and “sheltered”  work settings have proposed that the elimination of such programming would result in people with significant disabilities being left at home or shunted into day habilitation programs without the dignity of work, or even a token paycheck to call their own; however, the stories of how these policies impacted and devastated the lives of real human beings in The Boys in the Bunkhouse brings into sharp focus the ugliness and potential for exploitation that can lurk beneath even well-intentioned efforts to maintain a segregated workforce.

Although repetitive piecemeal work may be an appropriate and needful job for some, for others it is unreasonable that they compete with non-disabled workers in that setting. This doesn’t make those with significant disabilities the pigeons we throw our crumbs to. Believing that all people have capacities and that they have the right to  pursue their own interests and passions is foundational to moving the conversation beyond who belongs in the community  to how we are going to help them get there.

Hoarder

apples-fruit-red-juicy-39028She put a padlock on the outside of her bedroom door. My mom’s roommate. She was beautiful and wild and I was completely in love with her. She was kind to me. She took me out for spaghetti once. Another time a picnic. But that day, the day of the lock, she was enraged. She hated my mom’s boyfriend with a passion. “He was in my room again wasn’t he?” I didn’t know. I stayed far away from the boyfriend.

Roommate accused the Boyfriend of eating her food. I was afraid to tell her it was me. Her food. Mom couldn’t keep groceries in the house because she was on a diet. We usually had Saltines and Boyfriend’s beer. I don’t know what my mother subsisted on, and Boyfriend would get fast food. But Roommate had watermelon, and carrots and cheese, fancy flavored waters and apples. When I would ask mom for dinner I was given a couple dollars to ride my bike to the gas station. “The Convenient” we called it. Chips, candy bars. It was something.

Then Roommate was just gone. An open door. A twin bed, a mirror propped on the wall, a small bag of garbage. I wished I had not eaten pieces of her watermelon, or smuggled out her carrots and cheese, but I had a new bedroom. An upgrade from the couch. I hauled my clothing from the hall closet to the big closet in my new room. I could see the bay from the window. I had a sheet and a pillow. It was okay.

Mom was in the Navy and when you are in the Navy you had to go “out to sea” at certain times. I think it was once a month, or if there was a hurricane or storm. In my couch days, I could be gone before Boyfriend was up. Out the door, into the swirling sea of neighborhood kids or to the actual sea, the bay, to play in the sand. Some of the parents in our complex wouldn’t let me in their house. They didn’t want “messed up with those white people.” Others always seemed to have an “extra” sandwich or a glass of Kool-aid when I was around, even if it wasn’t lunchtime. They knew.

That all changed with my new room. It was that weekend, mom was going out to sea. I woke early needing to pee. The door wouldn’t open. I pounded. Silence. My bay view window also overlooked the parking lot. Boyfriend’s car was gone. The hardware from Roommate’s lock had remained and he had locked me in. Desperation. Roommate’s abandoned bag of trash provided a Big Gulp cup, a makeshift toilet.

After a few hours, I began yelling for help out of the window. No one answered. Our apartment was on the end, separate, only two units. The only other white people in the complex, two ex-Marines, like Boyfriend, lived there. That night, when Boyfriend returned, they appeared and called him over. I would not try yelling out the window again. Upon release I raced to the bathroom to gulp handfuls and handfuls of water. I was warned not to tell. I learned to prepare. Rinse the cup and put it under the bed. Get what you could and hide it. Saltines. Beef Jerky. Between the mattress. Under a pile of dirty clothes. Tucked up inside the corner of the closet. It was still never enough for a whole weekend. It was better than nothing, better then hours of staring out the window with your hunger as your only company. I snatched a couple books from mom’s room. The Clan of the Cave Bear. The Story of O. Not exactly child friendly, but my mind was hungry too. It was a hell of an education.

I’m the adult now, and one of my kids is hoarding food. Crackers, fruit, frozen waffles. Anything he can get his hands on. Under the bed, between the mattresses, in the drawers, in the closet. I worry that we’re going to get bugs. I’m afraid he will get sick. I’m constantly cleaning it up. A constant reminder of his life before he came to us. A constant reminder of what we share. I have granola bars in my car. Protein shakes in my purse. I once stayed at a hotel that had bowls of shiny apples in the lobby. I was only there a few days but I steadily collected apples in my room. So many apples. I didn’t eat them. Such a waste. But I don’t need to be hungry, I just need it to be there. And so does he.

I got him a box with a lock and a key. The key is his. I ask him if he will at least keep the food in the box. Yes, he is enthusiastic about the idea.

My mind can’t help but go to other people I know, people who do not always have keys. People whose access to food is decided by someone else, an authority who has deemed them too fat or too foolish decide when and what they eat. People so desperate they will resort to violence over a juice box. People left to sit for hours, whose minds are surely hungry even when their stomachs are not. I think about food, power and control. I give my son the key to his little box, and assure him he will always have the key, and maybe that will help.

Maybe.

Euphemisms for Disability are Infantalizing

“The problem was that disabled people are stigmatized and as a result, things associated with them including language become associated with that stigma.”

crippledscholar

Labels Image Description: a hand places disability label cards onto illustrations of children. Still taken from this youtube video

I have written about the importance of language as it relates to disability before. To oppose the idea that clear language should be avoided in favour of what can best be described as pretending difference doesn’t exist to opposing the replacement of clear language with euphemisms.

Euphemisms are rampant in disability discourse. There is this misguided idea that disability must be softened and made palatable.

This comes from general assumptions that the word disabled is negative and shouldn’t be used to describe people and from watching words that relate to disability be adopted by society as insults.

The best example of this can be seen in the evolution of language around intellectual disability. In the early, to mid-20th-century people began to realize that language utilized to describe intellectual disability had been…

View original post 924 more words

Hot Potato

” I watched the party unfold with a new SRV-colored filer…”
I remember very clearly going home the first day after an srv class with the words of the instructor echoing through my mind. You can’t unlearn SRV, once you know social role valorisation your view is changed forever.

Cincibility

Candice wrote a beautiful post on choice/work the other day.  Make sure to check it out.

Her last line was powerful:  “allow them to choose with, not be chosen for.”

This is the sentiment that underlies all of our best values:  Self-determination, independence, empowerment, and personal choice to name a few.

A few months ago, Candice, Bridget and a few of us were introduced to the concepts of Social Role Valorization, which has been championed by Wolf Wolfensberger, among others.  It was a powerful experience for me, and I will never look at my life and work the same way.  That’s a good thing.  We’ll have to get into Dr. Wolf and how he and his theories have been marginalized (after all, they strike at the heart of the status quo) at a later date.  But for now, I’d like to talk about one particular concept presented…

View original post 742 more words

For Hire

Some people have gifts that show up in unusual ways. How can we take gifts and turn them into opportunity?

Cincibility

“By the end of the year, though, Jamie had lowered his sights from “marine biologist” to “marine biologist helper.” And by the end of eighth grade, when we met with all his teachers and aides and paraprofessionals to go over the Individualized Education Program that would chart his way through high school (good news: the high school French teacher agreed to have him in French 1 for two years and French 2 for two years!), when he was asked what he might do for a living when he graduated, he said dejectedly, “Groceries, I guess.” I’m not sure what I would have felt that day if I had known that he would have to settle for less than that.”  Full article here

As Starfire has started to dip our toes in some cases, and jump in headfirst in others into what meaningful work works like, this article hits a lot…

View original post 817 more words

Transforming the Conversation

looking

Peter Block, writes on Werner Erhard’s view on the power of language in his book, Community: The Structure of Belonging:

“Werner understands the primal creative nature of language… asserting that all transformation is linguistic. He believes that a shift in speaking and listening is the essence of transformation. If we have any desire to create an alternative future, it is only going to happen through a shift in our language. If we want a change in culture, for example, the work is to change the conversation–or, more precisely, to have a conversation that we have not had before, one that has the power to create something new in the world. This insight forces us to question the value of our stories, the positions we take, our love of the past, and our way of being in the world.”

Sometimes when navigating the human service system, I feel like I’m playing a tug-of-war game with my child’s future. Even the best intentioned service provider cannot give my children the things that truly make for a meaningful life.

Yet I continue to have conversations that dwell on my children’s deficits and their lack, providing whatever fodder and documentation is necessary to procure services that are supposed to help and support.

To be a recipient of services is to be a client, or consumer. Services are provided at a cost, and the client is a commodity. When money is involved there will always be a drive to provide services in a cost effective manner. The mantra becomes, “How can we reduce costs and improve care?” The reality is that care cannot be provided at a cost, because you can’t buy care.

As a parent, I often feel a disconnect between who my children actually are and the paper representation that floats from desk to desk in the world of human services. The one-dimensional client feels very divorced from the many roles my children occupy of son, brother, friend, neighbor, volunteer, artist, and so on. All people, regardless of disability, exist in the greater context of family, community and culture, yet these other attributes are oft ignored in the provision of services.

All the work that has been accomplished in the realm of developmental disabilities in the past 40+ years has shown that there are many ways for people to have meaningful lives, be supported in their communities, build relationships, and obtain a good life. The tools, data, and stories are available; it’s not a mystery and it’s not particularly hard. Yet we struggle.

Maybe it’s time for a new conversation.