Un-managing Expectations

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“people often talk about being scared of change
But for me I’m more afraid of things staying the same
Cause the game is never won by standing in any one place for too long”

Nick Cave

I like it when ideas start to emerge through a number of different channels in life – usually that means I should be paying attention to something.

Perhaps that something right now is about how to invest in the future while knowing what we know about the present and the past. Some people have referred to this as “managing our expectations,” but usually this is when the news is really bad and we should not hope for much. A couple of recent events are giving me pause. One has been brewing inside me since Friday.

A man who was dear to me in significant ways died unexpectedly last week. He was a man who had endured many terrible things – abandonment, institutionalization, and betrayal by people he trusted. For the past two decades, he had lived a very quiet life in a small community residence with two other men. I had not seen him for a good number of years, but I could imagine his life, deep in the “human service client role”, and any number of other stereotypical roles that people with disabilities tend to fill.

I was prepared for yet another funeral with messages from a stranger who did not know him about his child-like innocence, about how very comical he was, and about how the staff who worked with him were very special…. The oft-stated and inferred message that he is better off now, that his disability is “fixed”, and his imperfections made perfect…..I braced myself.

It is good to be surprised after cultivating 30 years of “managed expectations.” The service started with a powerful list of the valued roles that Ken filled in his life and community. One of those roles was “beloved neighbor”. The small voice of cynicism and doubt that I carry (well honed after 30 years) whistered, “Yeah, right. I know how connected people in these community homes are with their neighbors, who have rejected and ostracized so many people like Ken.” That voice is one I don’t like to admit I have, but I do.

The Pastor said some beautiful and moving things about Ken, and brought him into the room with us in some very real way. He then gave us time to share our thoughts about Ken with each other. The first person who spoke was Ken’s neighbor. I felt a sense of wonder that is rare but welcome to me. She spoke about getting to know Ken, about how she came to see his unique self and identity over time, and about the important gifts he brought into her life because she had the good fortune to be his neighbor. I felt a stir of surprise, delight, and hope, a little like Emily Dickinson’s “Hope is the thing with feathers”. The chipping away of a bit of my “managed expectations” was almost a physical sensation. Yet another lesson Ken managed to teach me, and this one from afar.

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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.

The Thousand Cuts of the Mundane

 

I am in the midst of helping to design a number of display panels to teach people about the history of Pennhurst State School v. Haldeman, the landmark case which firmly put to bed the notion that institutionalization was any kind of a good “answer” to what ought to happen to marginalized people.

Although more than 10,000 people entered the doors of Pennhurst, and spent at least a part of their lives in deep segregation, their lives serve as a testimony to the human spirit, and what has finally been learned about the ultimate failure of the institutional models to contribute to good lives, growth, good health, relationships, and valued roles where all contribute.

In the course of thinking about how to bring those lessons to life, a colleague of mine, Greg Pirmann, who is long-time loyal to people with disabilities, said a few “somethings” I cannot get out of my head.

“To my mind the real tragedy at Pennhurst was the mind-numbing ordinariness, the mundane everyday nature of this separate world to which we condemned a group of people.”

and…

“It is easy to get people to agree that the horrific conditions Bill Baldini found in 1968 were wrong. It is much harder to get people to understand that institutions (including the three-bed ones operating today) are wrong.”

 

Thanks, Greg.  Much to be thought about there.  The worst of the worst conditions can lead us to lose awareness of the everyday conditions faced by many people with disabilities today.  I can think of any number of atrocities which we use often to illustrate points about what we as a society are capable of.

Remember any of these?

The Ashley Treatment (surgically and chemically infantilizing people with disabilities to be “lifelong children”, and thus easy to manage).

Judge Rotenburg Center, which is continuing to repeatedly use electric shock as aversives on children and adults, sometimes when they are tied down.

The 15 year old boy in Holland, who was tied up on a leash to a wall for three years.

The 9 year old student with autism who was stuffed into a duffle bag by his teacher.

There are many, many more terrible examples of brutalization these days. They serve to illustrate how things can go very, very wrong, unimaginably wrong, for people who are living on the margins. They make us angry, and, sometimes,  they make us wonder what atrocities we might participate in if the conditions were right – under the right conditions.  This is deserved anger, and often spurs good and rightful action.

 

I wonder, though, can our focus on atrocities also make us not recognize the “thousand cuts” of marginalization and devaluation today? Can a focus on the dramatic and terrible make the ordinary, seemingly mundane conditions of everyday wounding seem less important? 

As we struggle with the wholesale transition to “community homes” as a standard model of providing “home”, the ways in which we continue to fall short of providing authentic, full, rich home could seem less urgent.

The segregation I see in my local middle school is much less obviously awful than the back wards at Pennhurst, but it remains a potent source of rejection and low expectations.

As we see many people with disabilities experiencing the trappings of typical life, might we easily lose sight of the simple fact that many people have very few, if any, freely-given relationships in their lives, and remain, in the ways that count, totally impoverished in terms of money and possessions that are theirs alone?

The long days with little content at many of our day programs express that value we hold for people’s time and lives, yet people are treated kindly and by good people who aren’t sure what to do to make things better.

The fact that we are institutionalizing our elders en mass, and that we are re-institutionalizing many people with mental illness into our prisons seems less toxic, somehow, than the lurid examples we often focus on.

Thank you, Greg, for reminding me that the work these days on behalf of vulnerable groups involves not only the fighting of obvious horrors in the lives of others, but remaining aware of the continuous, everyday conditions that often persist relentlessly over the course of people’s  lifetimes without much public  indignation or recognition of what it would be like to experience the long slow pain of seeing others gain  “the good life” all around you, yet somehow you never seem to quite get it. “It’s not for you” might be the message, and that is a painful message, indeed. We should not inoculate ourselves against seeing this pain and identifying with those who experience it by focusing solely on the most obvious horrors happening around us.

 

 

 

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.

Waging War on Disability

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Waging War on Disability

As thousands, even hundreds of thousands of people take in the message on the side of this Seattle streetcar, one must pause for a moment to make note of the implications. On some level, this is a slogan designed to “rev people up” to support research, to give money, maybe to raise awareness. For me, it raises deeply unsettling questions about what comprises human identity, what is disease, and, taking the wartime rhetoric of destruction, to what lengths would we go to eliminate dread afflictions like cancer, diabetes, and ….autism?
Cancer and diabetes are medical conditions that impact and affect people in terrible ways, and that cause great suffering. I get that. I bore witness as both my mom and my dad died of cancer. Some people talk about how experiencing these illnesses have brought some positive impact to their life, but, by and large, a diagnosis of cancer or diabetes probably implies bad news for most everyone, including those who love the person who has the disease.
Autism, though. In my mind come vivid images of the people I know in my life who are said to have autism. Like Christopher, a young man who I find intensely interesting, with a wicked cool sense of humor, who has ways of seeing the world that are unique and eye-opening to me. The label of autism means many things to many people – a movement disorder, a neurological difference, a genetic anomaly, a fact of identity, a rising and rapidly growing threat to our humankind. For me, I can’t help but think of individual people who I respect, admire, and who contribute to the world in big ways. In fact, the thought of a world without those particular people is one I don’t want to imagine.
What if the thing we seek to “wipe out” is an integral part of the human condition and identity? What if wiping out a ‘condition’ means that what is essentially Christopher is not welcome and should not be. Who would Chris be without what people perceive of as ‘Autism”, and what would the world be without him? Too often, defining characteristics that we devalue in association with the people who display those characteristics has led to many terrible acts, and slogans like this one on the streetcar make me fearful. In “wiping out” a characteristic, how far might we go? Is there a world hurtling towards us in which we might meet a person with Autism or Down Syndrome and say, “Wow, how did that one get through?” In the process, what might we lose as a society and as people?

Albums and Attitudes

In my family, summer is the time for photographs, as we try to capture images of our experiences with each other and the people we love – those images are reflected on, shared, saved, and savored. They stand for more than they are – they are full of meaning – of the feeling behind the image, the messages about who we are and what our lives are made up of.

I have a few snapshots, or even entire photo albums, that are sticking with me this summer, that seem to represent the greatest challenges and the greatest hope for people who have been clinging to the edge of our communities as outsiders. One is of “Spirit Day” at my daughter’s school. Thomas and I volunteered to help with the typical activities of the middle school that day, a mix of athletics, games, music, and competitions.

Snapshot: The Middle School Principal approaches us, knowing our interest in disability issues, and says,”We are so excited to show what we have done for our learning support kids so they can participate today”

The day starts with a parade – the entire middle school has been divided into two teams, the Grey Team and the Blue Team, and they are competing throughout the day for “spirit points”. The Blue Team and the Grey Team organize themselves, sort of, in two bunches, line up on the track and form a parade, accompanied by music through the loudspeakers, with each homeroom sporting brightly colored t-shirts made by the students.

Snapshot: The Life Skills Class leads the parade. About 15 students with obvious disabilities and matching T-shirts with bulls-eyes painted on them slowly move or are wheeled around the track. They are not a part of either the blue or the grey team. They are their own team. They are heralded by an announcement over the loudspeakers,”and HERE are our life skills students, leading the day”. When they have made it halfway around the track, they are led back into the school building.

Snapshot: The day proceeds with many games and lots of fun. It is a real scorcher, and the school provides bottled water, which means that water fights erupt with fits of laughter and much chasing around of each other. The kids are having a great time. Well, most of them. The children with the bulls-eyes on their t-shirts are long gone, excluded from the games and protected from the heat.

I try to keep an eye out – What happened to the children with disabilities who led the parade? After a few hours of keeping score on the flag football field, I head for home,and the Spirit Day is in full swing. I cut through the school to head back to my car.

Snapshot: The hallways are mostly empty, as the kids are all outside. Except they aren’t. I pass the The Autism Support classroom on the right hand side of the hallway, and its class members are in the room. If you missed the fact that it is the “Autism Support Class” by the sign on the door, you will note the posters outside educating the other students about Autism by asking true/false questions. “Autistic people don’t can’t make friends” T or F. I wonder to myself what passers-by are really learning.

The snapshots now come fast and furious, as I pass the Life Skills Classroom, full of the students that led the parade, now watching a movie while the other middle schoolers play, run, flirt and have a great time dumping water on each other. Then, a few hundred feet down the long hallway….the Multiple and Severe Disabilities class, indicated by a sign and full of students, as is the other Autism Support Class and the Emotional Support Class, around the corner.

It is a stunning realization that my local neighborhood middle school has 5 segregated special education classes, for a student body of 468. Five. It appears to me that none of those students are participating in Spirit Day with their classmates. Maybe it is too hot, maybe the students opted out, maybe there were not enough aides. Maybe it was ENOUGH that the life skills class led the parade.

Two weeks later, I am visiting another middle school. It is just a regular day at this school.
Snapshot: It is 7th grade Science class with about 21 students. They class is filled to bursting with exuberant middle school energy, as they work on group projects, clown around, and build models representing “energy and momentum”. After being there awhile, I realize that there are two students with significant disabilities, who are working with other students. One student slings his arm around Justin with affection, as they complete their model and it actually works.

Snapshot: Mr. Grisher’s 8th grade Math class. Alana is noticeable in the class, as she is a student who uses a wheelchair, and has pretty obvious disabilities. They are working with geometric forms, and Alana is working with the same materials, is answering questions about the forms using eye gaze and a really cool communication system. A student leans backwards in her chair and starts asking Alana questions as well – she is reminded by the teacher to attend to her work. Alana and the student in front of her exchange conspiratorial glances and smile at each other.

Snapshot: Interview with the principal. “How many students attend this middle school?” The answer is 708. “How many segregated special education classes do you have here?” The answer is zero. Zero. Zip. None.

These snapshots keep coming into my mind this summer, as schools prepare for the return of their students this Fall. When my soon-to-be-eighth grader started at her school last year, being her parents’ daughter, she was filled with indignation at how students with disabilities were separated. As they year went on, she would talk about how the students with disabilities went to lunch ALONE and before the regular students. “We can’t even eat lunch together?” she would say with some heat. She would talk about how they did not even change classes at the same time as the rest of the students, or take phys ed” with the typical students, assuring that there would be virtually no contact.

As the year progressed, an incidental comment was tossed out which made me cringe. Following a comment about how the “special ed” students change classes at different times, she said, “and they make SO much noise” with more than a hint of disdain. I felt a chill, mostly at the power of segregation to shape and color the judgements we make and the conclusions we reach.

This is how we learn from the images, practices, and environments around us. This is how devaluing attitudes are shaped and passed along across and among us. I wonder again about the snapshots of the school where Justin and Alana attend. I suspect some different attitudes are being crafted and shaped. Their school is nowhere near as well resourced as my daughter’s school, so it can’t be money. I think it must be mindset and leadership. This is the album I want to carry with me from this summer forward. It contains the message that the right thing really can be done, and it matters.

A Hair’s Breadth

The simple facts of vulnerability and safeguarding seem to keep presenting themselves in the world, perhaps so we can learn what we need to from them about being of service to others. The explosions and death and terror caused by people towards people reminds me of the fragility of life, the thin line between everyday lives and chaos, and the seeming randomness with which those we love can be struck down in a moment.

What protects us and shields us to any degree? What about people who are living on the margins, on the very edges of society, people for whom things can go very badly, very quickly? I am thinking this morning of that young man – Robert Saylor- who was in Regal Cinema Theater #16 in Frederick, Maryland on January 12, 2013. He was 26 years old, had watched and apparently enjoyed the movie “Zero Dark Thirty”, and wanted to see it again. A movie theater employee called mall security, which consisted of three off-duty policemen (not in uniform), moonlighting as mall security guards. Mr. Saylor, who had Down Syndrome, was handcuffed as they tried to forcibly remove him from the theater. The scuffle that ensued resulted in Mr. Saylor being held facedown on the floor while handcuffed, and he was soon dead by suffocation. Observers state that before he died, he cried out for his mother. Blame has spread far and wide – lack of education for security officers, police mindsets, predjudice against of people with disabilities, lack of awareness of physical vulnerabilities of people with Down Syndrome, and more.

What I have heard may be true, and even if it is not completely true, it matters as we try to figure out how a chain of events like this could occur. It is said that Mr. Saylor was accompanied to that movie by a service worker. It is also said that, when it became clear that he was not leaving the movie theater, she decided to give him some time while she went to retrieve the car to pick him up in the front of the theater. By the time she had come back, it was too late. I can read some details into this scenario. I can read that Mr. Saylor had done similar things before – he doesn’t like to leave when he is having a good time. I imagine that she knew him pretty well, and knew giving him some time and space would be helpful. At some point, she may well have simply bought two $11.00 movie tickets and sat down for another round of Zero Dark Thirty, had she had the chance.

At some point, she walked through the lobby of the theater, and for whatever reason, did not to mention to any theater employees that Mr. Saylor was still in the theater, that he was waiting there until she came back, and that she would indeed be back in a few minutes. Perhaps she thought of this, and decided against it. On another day, she might decided differently. Perhaps if there had been a welcoming face on her way out, she would have, perhaps not. Had she, though, things would, in all likelihood, have turned out differently, and perhaps the Saylor family would not be grieving the death of their 26 year old son.

No blame intended from me – what lays me low is the realization of the hair’s breadth that separates people with disabilities and other devalued conditions from disaster. When we decide to walk with such people, we carry a responsibility of knowing that each and every action we take in that person’s life has exponential weight in terms of the consequences. Those consequences will be born quite heavily by the people we are in service to, and perhaps never even be noted or appreciated by those of us in service to them. This calls us to be wide awake and aware of the seriousness of the roles we have in the lives of the people we serve and are walking with.

All the policies and protections and laws and rules that many of us have to contend with can indeed provide important frameworks for protecting and safeguarding those with fragile lives and shaky life circumstances. However, acute personal awareness of what we actually DO in the lives of others moment to moment, and how these actions may impact the people we are serving adds a layer of safeguarding that is fallible and itself uncertain, but powerful and potentially life-saving.