A Rose by Any other Name….or….Just Tell the Truth

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“Don’t bend; don’t water it down; don’t try to make it logical; don’t edit your own soul according to the fashion”

Franz Kafka

We can work on our language, how we speak of people, how we express esteem and respect through the ways we talk to and about vulnerable people. I get that. I am right there with you. No argument. It is only polite and only right to adapt our language to the comfort of those around us, and that we use a language of respect to and about others.

The language around disability these days is so hard to fathom – and sometimes simply communicating and communicating simply seem impossible.

First we have the lexicon of disability, full of code words, the “right” words, the “wrong” words. Words that signal whether we are coming from a “people first” orientation, a “clinical” perspective, a “disability rights” focus, a “stuck in the past” focus, or a “progressive” focus. The latest subtle word difference of whether you say “people with disability” or “people with disabilities” is a source of tension and also speaks to the orientation people are coming from. We’ll see where all that falls out.

I hang around across a pretty broad swath of geography, and I cross over different arenas of disability pretty often – I can walk in the disability rights arena, have much in common with those working from the framework of human rights, feel pretty comfortable in inclusive education and as comfortable as you can feel in the mental health field these days. I am most at home in the Social Role Valorization crowd, but have lots of esteem for those practicing what are called person-centered approaches. School inclusion speaks to me, and I speak to it as well. I understand that when you are attending the Society of Disability Studies conference, you best say “disabled people” rather than “people with disabilities.” When talking to people involved with the neuro-diversity movement, the preferred language is autistic people or autistics, but never say that in the world of intellectual disability.I know that “people first language” has become literally the law of the land in my home state of Pennsylvania, when it comes to people with intellectual disabilities, but not other people.

I try to give people some grace and a good deal of wiggle room when it comes to language. Sure, Dr. Wolfensberger taught us about the power of language to convey unconscious yet devastating images about people, and the potential of language to send messages of worth, esteem and belonging. He also taught us that it takes a lot more than just changing our language. His position about just how much he would engage in the language wars are are well known, and extensively articulated, using clear language, I might add.

In general, though, I think we probably should listen a bit more deeply to others for what is being communicated, and be a bit easy with each other on language, when we can. Otherwise we might join the ranks of many people who are terrified to speak at all about disability, because they are afraid they’ll use the wrong word. A little forebearance and a lot more listening goes a long way.

There is one issue I cannot bear, though, which prompted this bit of a rant coming up. That is when the truth is not told. These days, we hear lots of untruths about human services, and it muddies already cloudy water in big ways.

We might hear, and frequently do, that institution is community, that exclusion is inclusion, that segregation is integration, that restraint is a therapeutic hold. I think we should strive to tell the truth – to call it what it is.

A local university near my home is starting an inclusive post-secondary program for students with intellectual disabilities. Yes, it wants to be the real deal – and tell the truth about it. University means regular courses, campus engagement, residential living, having an advisor, learning to live in a dorm, joining interest group and clubs, and all kinds of other aspects of “university life.” Inclusive post-secondary means assisting people with disabilities to engage in all those aspects of university life. This is building on what we are learning about how to include people with intellectual disabilities in college and university life by some great explorers who have paved the way. The leaders of this initiative are trying to be clear and tell the truth.

I came across a glossy advertisement for a college just moments after discussing this project with a colleague. This college described itself as a college which welcomes people with disabilities and autism. They have both undergraduate and post- graduate programs. The photos look like those of any college or university. It definitely has the right look. Look closer. Read the small print….

They mention that their undergraduate courses offer “apartment readiness” and life skills; vocational skills and personal grooming; grocery shopping and community involvement through volunteering. This is sounding a lot different from my notions of college courses.

Their graduate program talks about “membership in their graduate community” – that’s curious –and a closer read reveals that living on campus for life is an option. Things are getting very muddy now. What kind of a college is this?

A campus designed for people with disabilities to live a segregated life, participate in “readiness” for community life, and potentially remain segregated for life there – where people eat, reside, have work training, all together, apart and away. There is a word for this – we named it long ago, and we know what it is. Let’s call things what they are. Telling the truth lets us at least be clear. Honestly, there is so much work to be done, and wasting our time trying to see the truth behind the façade saps our energy. Most of us did not decide to try to change things for people with disabilities by inventing the same things with new names.

A Promise and a Plan

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“Americans with intellectual and developmental disabilities historically have been shuttled far from society’s mainstream into segregated lives and workplace serfdom, earning wages as low as pennies per hour for the most repetitive and menial jobs. The Supreme Court in 1999 pronounced this kind of treatment a civil rights violation under the Americans With Disabilities Act, but abuse and isolation from society have continued to this day…….The need to end the economic servitude and social exile of people with disabilities has long been clear. The Providence agreement is a promising but overdue starting point”
New York Times Editorial Board
Published 4/11/2014

And here we have it – could have been written by Justice Thurgood Marshall in 1954. It puts the issue of the segregation of people with disabilities in the area of work firmly in the arena of civil and human rights, and out of the “this is the best we can do, as a society, for those people” mindset. Bravo NYT. You can read the entire editorial here, which applauds the planning and care with which the state of Rhode Island is approaching the issue of moving towards positive futures and meaningful days for people with disabilities.

This is a story that has been growing and gaining momentum over time. The National Disability Rights Network unveiled one of the worst recent atrocities around the bondage of devalued people in the past decade in their 2011 report.

This story, of 60 men with disabilities freed from an institution in Texas only to be (one can only say) enslaved and exploited at Henry’s Turkey Farm in Atalissa, Iowa, for decades, was brought to life in the accompanying film “The Men of Atalissa” a few months ago. You can view the film here.

Alongside this vivid portrait came a national outcry and commitment to close sheltered workshops, with a predictable and understandable backlash of “Isn’t the workshop better than sitting at home all day?” I suppose it could be so, for some people.

Some of the great teachings I hold to (and credit Social Role Valorization principles for) includes two that are relevant here: First, all of us humans, in the face of complexity, tend to resort to either/or thinking, losing site of all the possibilities between either and or. So it has to be sitting at home OR in the sheltered workshop. Along with this comes an associated fear that the sheltered workshops may transition into adult day programs, often another repository for people to experience intense segregation all day long, and for life.

Second, we should be mindful of stripping roles away from people (even negative roles like eternal workshop client) without focusing on carefully constructed new and positive roles for people to move into. This means we had better be focused on crafting what should be, rather than just eliminating what should not be. Both these teachings apply here, and we can be cautiously optimistic about the way Rhode Island is approaching this – planning for individualized employment and job development, preventing continued segregation in day programs, and setting strong expectations that include a firm trajectory towards career and a meaningful post-school life starting young for people with disabilities and their families. We are watching you, Rhode Island, show us the path. We have the promise, and we have a reasonable plan.