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.

 

 

 

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Handle with Exquisite Care

This morning I am reflecting on the deep care and “restraint” that is required if we are to serve vulnerable people well. Many times, those of us trying to assist others often have to take a deep breath and wait.  At other times, we need a sense of urgency to drive fast and clear action in the lives of others. This is often a practical struggle, and a moral one as well. Young people in particular seem to challenge our abilities to sit tight sometimes, and at other times, act with decisiveness.

I have a young man in his early 20’s I am holding in my mind and my heart this morning.  At one point in his life, those who loved him were deeply concerned about his prospects in life – many labels and diagnoses began to accumulate, and many services and supports as well, beginning in the 4th grade and extending through his high school years. At the age of about 15, he decided that medication was not for him, and despite the dire predictions of those around him, especially professionals, he struggled though with the mostly expected high and lows of “teenager-hood.” Then, things went very badly, and his life seemed to come crashing down around his ears. Some of the most dreaded and fearful labels were proposed – things like borderline personality disorder, major depression with suicidal ideation, mood disorder. Those of us around him were unsure how to support him, uncertain of his future, and eager for him to receive what the mental health system was freely offering – counseling, medication (lots of it), programs, a case manager, and a host of services. As is one of his most wonderful trait, he decided to stand up and politely decline our offers.  No, but thanks. We stand by, often wringing our hands, but have been willing to wait, support, offer practical help, and do what is necessary to keep him in everyday life. “Not doing” takes great strength, and may be the greatest service he ever received from the professional mental health system. At the same time, it is really tough to do.

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.

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.

Back on Track

In the Hartford Courant, Sharon Brewer and Nancy Aker describe the experience of how the life paths of children labeled with a mental illness often take a widely divergent path than that of more typical children. They call them parallel paths, and point out so compellingly that the ordinary markers of typical childhood – like birthday parties, sleepovers, SATs, and sports teams often get replaced by such markers as extensive medical appointments, repeated hospitalizations, separate schools, separate classes, prescription drugs that impact mind and body in tough ways, and things like “social skills clubs”. This phenomenon – where a person is seen to have or aquire an “undesirable characteristic” – like old age, an intellectual disability, mental confusion, a mental disorder, even poverty – and then get sucked into a trajectory which sets their life on a path so incredibly different from valued people is one we can witness time and time again. Let’s face it, it is almost always very bad when this happens.
http://www.courant.com/news/opinion/commentary/hc-op-brewer-aker-mental-illness-lonely-isolation–20140228,0,2776809.story

The conclusion Ms. Brewer and Ms. Aker come to and advocate for as family members is to request that friends, neighbors, and citizens come together to be more hospitable and supportive to families who are experiencing mental illness within their family. No disagreement there, but as always, I have my ten cents to add.

One of the most beautiful and helpful concepts for me over the years has been the idea of the “culturally valued analogue”, a term invented by Wolf Wolfensberger and taught in Social Role Valorization. The “CVA” as we call it, is taking a look at “what happens for typical citizens who have a valued status” in a particular area of life. Quite simply, our colleague Tom Doody has described it as “studying the ordinary”. This has great and elegant utility when someone has a vulnerability and may need some safeguarding from a wholesale leap into the “alternate path” of clienthood with all its peril. So when a young man who is dear to me began to have a laundry list of diagnoses attached to him, those who love him took great care to keep tabs on the “typical desired teen life” – even making a list of those things, and preserving as many of those as possible. Attending special classes, support groups, all sorts of therapies, special schools, lots of drugs, expensive new brain scans, special expensive “coaches”- these were freely and cheerfully offered by well-meaning people in his life. Those who stood by him never took their eyes off the ordinary, and saw each as something to be carefully and skeptically evaluated, as they are all pieces of the trajectory towards that parallel path. When any were accepted in any measure, efforts to “strengthen the ordinary” were redoubled – guitar lessons, a course in music theory, study abroad, service club, interesting school projects, time with robust friends.

As the authors note – once people get off the conventional path, the likelihood of “rejoining the mainstream” is very slim. This is the clear truth to those of us who have struggled to assist deeply devalued people to be welcomed in the world. When possible, it seems powerfully important to pay close attention before people’s lives get derailed.

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?