Keeping Uncomfortable

“Movements shouldn’t be about trying to sell the idea. Movements should be about recapturing the vibrancy, the heart, the energy, the love, the pain, the suffering. If we aren’t talking about pain and suffering along with our goals, then we’re not talking about the issue and at every moment we should be talking about the issue.”

Daniel Hunter, strategist at Training for Change and author of “Building the movement to end the New Jim Crow”

As our world (and each of us) struggles with being together, being as one, and wrestles with our fears and terrors over difference, diversity, and belonging, these words have great meaning for us.

This also strikes me as an issue at the heart of the work that many of us are engaged in to improve the position of people with disabilities within our society. For most of us, we entered this work to join a liberation movement – one which acts to create conditions where people with disabilities can lead and live good lives within a society that values them, welcomes them, and has a place for them.

These days, we dance a great deal with the idea of service from one to another human being as being a technology, a strategy, a method, even a “treatment”. These methods are a means, perhaps, to make good things like home, relationships, and belonging really happen. For example, social theory tells us that if we help people have valued social roles such as “good neighbor”, colleague, citizen, or beloved member of a faith community, then those good things are likely to flow.

Can you imagine applying those means to another person’s life without passion, without awareness of what it means to live with a low social status in our society, without understanding of the impact of continuous rejection as the most prevalent life experience that has formed and shaped some deeply wounded people? Where measures are taken in people’s lives without full awareness of the urgency, the danger, the call to action on behalf of a whole class of people who need, without doubt, privileged people to stand by with and for them, not to “do things to them”?

One of the roles that some of us must take on is to provoke and incite passion and even a bit of outrage at the segregation, congregation, and continued struggle that people with disabilities face at the hands of a society which, truth be told, has demonstrated and continues to demonstrate that it might prefer if they simply were not around, or at least remained unseen. Funny, but in these tame days, this feels a little dangerous to talk about. Discomfort is not valued in comfortable places.

Things are improving for some groups of marginalized people in most western countries – there are increasing actions towards wage equality, accessibility, full citizenship, and inclusion in nearly every area of life. Hard won, I should add.  This warrants celebration alongside people with lived experience of disability and their families. It also warrants keeping our sharpest eyes on and remembering that perhaps the hardest work is yet to come.

At this point, losing the fire is not only possible but before us, as we settle into services that seem correct, methods that seem not only OK but are data-driven, called best practice, and are highly regulated and supervised. Our clearest vision might be called for in this day and age, rather than the days when what we saw we KNEW was bad.  Now, the oppression is harder to see, easier to accept, and masked with truly good intentions. One of my most important mentors told me early on, no matter what,  “stay close to devalued people” – this advice remains powerful, and safeguards against my own complacency, always waiting in the wings. It also requires me to walk next to the pain and suffering  that lives alongside our goal.

 

 

 

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.

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?

Service in the Long Hall

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“Service is the rent we pay for the privilege of living on this earth. It is the very purpose of life, not something you do in your spare time.”

– Shirley Chisholm (passionate activist, educator, and groundbreaker who was the first African-American citizen to run for President of the United States…in 1972, by the way)

These words have got me thinking about the nature and meaning of service. It can mean everything from the vocations we pursue (customer service, human service, landscape service, mail service) to the voluntary giving of oneself in support of another.

In fact, even the idea of “volunteerism” can be broken down into types of service – one may serve an organization (like a library, museum, or service agency) or one may serve an individual or a family in a personalistic way. It is this deeply personal idea of serving upon another person which is driving my thinking today, as I offer myself to my favorite and only Aunt Lou in a time of great vulnerability.

At the moment, she is recovering from a stroke and a series of difficult situations, and is staying in a nursing home for 10 days as her family plans for her return home. My Aunt Lou is a woman who simply will not be institutionalized in her mind, or her body. This makes her particularly at risk as she simply will not “get with the program” . Because we know and love Aunt Lou, we also know she needs to be safeguarded night and day, and have done so.

I had this heartbreakingly poignant moment with her yesterday. As is often the case with human service environments, there is a strong staff culture at the nursing home where she is staying. Day and night, there is a lot of friendly talk, laughing and joking amongst the nurses, aides, social workers and others. Some of the people who are living in the nursing home seem to enjoy the repartee, and try to be a part of it. It mostly seems to annoy and confuse my Aunt Lou, who looks at me with a knowing hard look when it happens.

When visitors come, she will say, “You will not believe what has happened to me”. This is no small talk, either. The words are sometimes a long time coming, but with focus and time, they do come. The bells and buzzers and alarms and chatter are constant and terribly distracting to Aunt Lou. They also are frightening and foreign to her, and rob her of her competencies, because she cannot easily hear or attend.

She is intent on walking, and walk we did yesterday, as she regains her strength, works hard to get her bearings and struggles to understand how life went so bad so quickly for her. On the walk (as she calls it “down the lane”) down an endlessly long hallway and maze of confusing passages and doorways, we passed the busy and active nurse’s station. As is usually the situation, many people in wheelchairs encircle the perimeter, perhaps enjoying the staff-centered action that is happening in front of them.

Moving forward with determination, but so fragile at the moment, Aunt Lou tenses as the staff burst out in uproarious laughter. She takes a stagger step, which nearly upends us both. Whatever has happened, it is very, very amusing to those involved. The clustered onlookers laugh as well, but are not part of the joke, at least not fully, and they seem tentative.

A flash of confusion comes over my strong Aunt’s face, you can see it quickly changes to a more determined look as she puts her head down, bears down on her walker, and moves more quickly. The aide who is walking alongside us, in explanation, mentions that the joke is that one of the nurses just “broke wind”, although that is not the language she used. It is one of Aunt Lou’s euphemisms. As we keep moving, the uproar continues behind us.

The trip through the confusing, endless hallway continues, but something has changed. Aunt Lou seems somehow smaller, tentative, unsure of herself. We finally make it to a grouping of chairs and sit next to each other. She keeps glancing at me as if for reassurance. 20 minutes go by, and by now her hands are trembling. The words come out, eventually. She finally just had to ask. “Betsy, did I break wind?”

I was nearly overcome with empathy as I realized the impact that the scene at the nurse’s station had on my Aunt Lou.

What does it take to give personal, respectful service to another human being? Can it be done in group settings which require people to conform, and there are people in the role of “staff” who are trying as best they can to cope with a situation which is hard to bear? For me, if I am going to have a professional relationship with vulnerable people, it seems urgent for me to have some relationships with a few people over the long haul who live on the margins, and for whom I have no professional obligation to at all. Shirley Chisholm had great personal empathy for and identification with those at the bottom of the social ladder. I suspect she also had personal relationships which made her keenly aware of the need to stand beside and behind people.

My Aunt Lou has always been a powerful role model to me – she raised 6 children on her own, on a social worker’s salary, by the way. She is strong, capable, so smart, and like me, a rugged “horsewoman” and a strong Quaker. The things she is showing me now hurt, but it is the kind of hurt that will strengthen my ability to keep in focus the importance of personally being of service.