Part III: Beware the Retarding Environment

(Foregoing Friday Random Ten and Friday Cat/Dog Blogging so that my posts, until next Wednesday, keep to the theme of Disability Awareness.)

I'm also posting this article in its entirety and I've gotten permission to do so. Reminder: If you want to do the same, you must first get permission by me to link it or by Kathie Snow to republish on your blog. She asks that you let her know when you're going to make copies for general distribution.

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Beware the Retarding Environment
Revolutionary Common Sense By Kathie Snow

In 1984, a report entitled, “Surviving in the System: Mental Retardation and the Retarding Environment,” detailed how placing individuals with cognitive disabilities in institutions or congregate settings puts them in “retarding environments.” Who were the architects of this impressive and profound revelation? A group of people who had been assigned the stigma-laden “mental retardation” label (members of the People First chapter of California).

Today, “retarding environments” can be found at home, in school, and in other settings. But how can typical environments be “retarding?” Because many individuals with disabilities do not have the tools and accommodations they need, which causes their social, emotional, and intellectual growth to be slowed down, or retarded.

Sara, a three-year-old with an orthopedic disability, is not crawling or walking. She’s positioned properly in a manual wheelchair, but she must always be pushed by someone. As a result, Sara isn’t able to experience the vast amount of learning that occurs when three-year-olds explore their world: going where and when she wants in her own home, learning she can “run away” from mom and return, achieving a new level of independence, and more. Her intellectual and social development are significantly impacted, and Sara is learning dependence in retarding environments at home, in preschool, and in other settings.

Her parents and therapists are focused on getting Sara to walk. That, they believe, is the “problem” that needs to be remedied. While focusing on one ability (walking), other—and more important—aspects of Sara’s development are in jeopardy.

But what if Sara had independent mobility (a power wheelchair) so she could explore and learn, acquire typical social skills, and develop independence? Which is more important: walking or mastering her world in whatever way works best for her?

Brian, a nine-year-old with a cognitive disability, is said to “function at the level of a six-year-old.” Because he can’t yet read, educators (and his parents) don’t feel he could be successful in a regular class, so Brian has spent three years in the special ed room, where teachers have focused on teaching him to read.

This placement has produced extremely negative outcomes for Brian. Being in the “retard room” makes him feel bad about himself. His struggle against these feelings is leading adults to presume he has “behavior problems.” Also, because he’s in the special ed room, he is not exposed to the typical classroom curriculum, which causes him to fall further and further behind. Sadly, he’ll probably spend the remainder of his school career in special classes, and he’ll leave the public school system uneducated and unprepared for work or post-secondary education, after spending twelve or more years in retarding special ed environments.

While educators and Brian’s parents focused on one skill (reading), Brian lost countless opportunities to learn from the typical activities in general ed classes. There are many ways of learning: through hands-on activities, computer programs and videos, listening, and more. The inability to read need not be a barrier to learning and academic success! Which is more important: reading or learning in any way you can?

Mary Ann has spent years in a sheltered workshop being “prepared” for a real job. She hates making widgets all day, but staff thinks she’s incapable of anything more. Like Brian,
Mary Ann rebels against the insults to her dignity, using the only power she has left: resistance. According to staff, her behavior “proves” Mary Ann is not ready for a real job.

Retarding environments are not limited to segregated or congregate settings. They can exist anywhere individuals with disabilities are prevented from living ordinary, natural lives and having power over their environments.

How can we prevent retarding environments? First, by understanding that people with disabilities need the same experiences for growth and development as people without disabilities. To meet that goal, children and adults with disabilities must be in age-appropriate, typical, ordinary, inclusive settings.

Next, people with disabilities must have the tools, accommodations, and supports they need to be successful in ordinary, inclusive environments. Few people without disabilities would be successful if they didn’t have appropriate tools and accommodations (computers, cell phones, support from peers, and so forth), so why is it OK for people with disabilities to go without the tools and supports they need?

And, finally, we must look at people with disabilities and presume competence. The language and labels we use, along with programs which attempt to fix a person’s “problems,” reflect the paradigm that people with disabilities are incompetent and unable. But they’re not! When we operate from the “presume competence” paradigm, we’ll ensure the Saras, Brians, and Mary Anns of this world are in natural, ordinary, and inclusive, environments, with the tools, accommodations, and support they need for success.

©2001-2006 Kathie Snow. Permission is granted for non-commercial use of this article: you may photocopy to share with others. As a courtesy, please tell me how/when you use it: kathie@disabilityisnatural.com. Please do not violate copyright laws: request permission before reprinting in newsletters or other publications. To learn more new ways of thinking and to sign up for the free Disability is Natural E-Newsletter, visit http://www.disabilityisnatural.com/.

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A little ancedotal evidence:

My sister has dyslexia. She was diagnosed in 1st grade, then held back to repeat the 1st grade again. Every single year my mom had to fight with the school system. Every.Single.Year.

My mom pulled my sister out of public schools and tried the private sector for a while to no avail. There she was just called "lazy", "stupid" and "unmotivated". It got a little better once my sister went to a public high school, because one of the Vice Principal's there existed specifically to be a disability advocate and she took it seriously.

Once, when my sister was supposed to leave her math class in order to take a given test with her Special Education teacher, the math teacher told her she couldn't go. Mr. B. said she wasn't really *disabled* and that she was using it as an excuse to leave class instead of taking the test. (She sucks on timed tests, which is part of the dyslexia, so she left to see Mrs. F. in order to be able to take her time and get help when needed.) Mr. B. wouldn't let her leave. When my sister got home that day, she told my mom what happened, who in turn got on the phone to the Vice Principal. Two days later my sister was taking the test over again.

And people, this was when my sister was in 11th grade, a whopping 10 years ago.

I didn't fully appreciate what my mom went through until I started working where I am now. I remember all the time and effort she had to put into making sure my sister got the best (and equal) education possible.

I remember my sister coming home several times with tales of teachers calling her out in class, saying she needed to leave for her Special Education classes, or referencing my sister's buddy notetaker out loud. And every time my mom would be on the phone to that teacher or the Principal of the school, telling them to stop making my sister feel like the outsider, or different, and every year it was the same thing. My mom joined PTA's and went to every parent-teacher conference just trying to be as involved as she could. Recently she told me, "In order to know what's going on in Peanut's school, you need to be on the board of the PTA." And in a way she's right, but it's not as great a need for me as it was for her (not to mention that I hated going to those meetings).

So if that's how hard it was for my sister, who has an invisible cognitive disability, imagine how hard it was (and in many cases still is) for someone with a visible and/or physical disability.