Trust the Process, Trust the People, Watch and Learn

This blog post was originally posted on Seeking the Way, a blog by Keystone Institute India.

One of the major themes within my own teaching and workshop content via Social Role Valorization theory and the field of human learning that is so relevant to each of us is the importance of imitation and modeling as “hands down” the most powerful force there is for both teaching and learning.

Like it or not, we model behavior of those around us and learn by watching and imitating.

This is one of the multitude of compelling reasons why separating and congregating people with similar competency impairments or disabilities usually spells trouble for people. We can argue well using civil and human rights to freedom from segregation, using the image damage that is done when devalued people are gathered together by others, and we can argue well that knowing what real dangers vulnerable people are face once society gathers them all together, apart and away. De-individualization, mistreatment, and brutalization are nearly always the result, despite what are often the best intentions.

Here, though, I am thinking only about the practical issues of role modeling in my own experience conducting my first learning event here in India. I had a powerful dose of it this week. Ashish Foundation, located here in New Delhi, agreed to allow Keystone Institute India to pilot a brief workshop/event in their program, gathering together over 20 family members of children and young adults with autism. Who better to kick off our work in India than Thomas Neuville and myself, seasoned international educators? I had a game plan, prepared relentlessly, and brought lots of impressive handouts and PowerPoint slides, ready to inform and educate right off the bat.

About 45 minute into the workshop, a courageous mother spoke up loud and clear and let me know what I was offering was not what she needed. Recommendations were made to change things up, and so that is what we did. Within 5 minutes, paper was on the wall, and we were all engaged in a lively and robust debate about the current realities for people with disability and their families, what our vision was for the future, and what needs to be done to move that vision forward. The ideas and analysis were captured in a visual way, and I was even given a second chance to wind the ideas I had intended to teach into the work, this time with good result.

Lessons, lessons, lessons, and it is I who am learning them.

  1. People’s time is precious and it matters.
  2. People should be given what they really need, and simply because we have a tool to offer them does not mean it necessarily meets their need.
  3. When people show us that what we are giving them is not meeting their needs, we need to bend, change, listen, and do something different.
  4. We should speak up and out with courage when we discern our own needs.
  5. People need to know others well and listen deeply in order to try to understand what is really needed.

In the space of a short workshop, we have so many learning parallels to how we must think about human needs and the needs of people with disability. Listen, observe, learn, respond. Sometimes sitting at the feet of those with lived experience is the best role modeling we can do. If we just implemented the above 5 notions at the core of human services and programs, that would be a good start to effective and relevant service. All role modeled by one woman who spoke up and spoke out.

Please share you thoughts and observations on the original post.

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.

 

 

 

Even when it hurts

I am thinking with some nostalgia about how great it felt to wholeheartedly leap into a new idea, new project, or new service with unabashed joy. It is both the blessing and the curse of learning to be able to, or even be forced to, by habit and strong mentoring, discern the dual possibilities of good things and bad things, and, of course, in-between things that might come from a particular measure.

Take, for example, a new initiative held up with great excitement by my faith community. My Quaker meeting has been debating the commitment to join an initiative where four families who are homeless are invited to spend a week housed in our Meetinghouse. The commitment involves doing this 4 times a year. At first blush,the benefits and rationales are obvious and seem unequivocable.

1.Homeless shelters are often awful.
Shelters are usually even more awful for families.

2. Our meetinghouse stands empty for much of the time. It is big, and warm, and has a great kitchen downstairs.

What is not to love about this idea? It was, indeed, instantly loved by mostly all, at least in theory, and talk quickly turned to “the how”. Could we recruit enough volunteers from our small congregation to cook, sleep over, monitor the families, and organize the effort? Do we need to install showers in the Meetinghouse? Should men and women be asked to sleep in separate rooms? How do we keep people from eating and drinking in the upstairs of the meetinghouse? Do we allow people to sleep in our beloved library?

And here is the curse and the blessing. Wolfensberger’s formulation of Model Coherency lives deep in my thinking structure. Even when I don’t WANT to think that way, I can’t seem to help it.

First comes a series of questions into my mind,”Who are the people we intend to serve, and what do they need?”
A brief look at the common experiences of people who are living in poverty (or made poor, as the Sisters of Notre Dame prefer to term it) show us that, almost without exception, people who are poor are subjected to continuous discontinuities, including those of place. People move, or are moved, again and again and again. It has a huge de-stabilizing effect on people and their lives. This has got to be factored into any scheme for making things better, and efforts probably should be made to avoid doing more of it. At least, we should acknowledge the potential problems. Moving into a church building for a week, and then a series of other church buildings, constitutes some serious moving about. The additional complication that, typically, within our culture, people simply don’t live in churches (they worship there, meet there, etc., but don’t live there) tells us this is a culturally alien practice, and so we should be wary of it.

A second question rises in my mind, kind of unbidden, and I wonder where these families would live absent the availability of rotating churches one week at a time. The answer, once asked, was a motel, paid for by the government. Is a motel necessarily and by definition worse than temporary beds and borrowed blankets in church sunday school play rooms? How about when you factor in that a family will be sharing that church with three other families they may or may not be able to get along with? How about when you factor in that they are minded by church representatives at all times, and factor in what that does to people’s effectiveness at the parenting role? I am not certain of the answers to those questions, but I do know that they have to be asked.

And so here come the deeper justifications, ones that are less likely to generate enthusiasm and a joy in service, but are real, practical considerations. One is, the families must use the office of the sponsoring organization as their address, so that their children can stay in the same school regardless of what motel or church they are currently housed in, and two, a bus comes and picks up all the families to deliver them to a day program where they work on gaining housing and employment. Having them all in a few churches to transport them makes this convenient. And the final justification for this is that this initiative costs less than government funds to house people in motels. The jury is probably out on that one. No question, in the short run they will rely on the voluntary work of many people, thus saving money. In the long haul, though, is it possible that the people “screened” and approved for this program are those likely to have the best outomes anyway, no matter what? Could equal effort applied directly to helping people to get a real home of their own, not a stepping stone discontinuity which could actually throw the family a curve ball into into deeper disarray?

The question must be asked…is this project about the people served? Or is it about the servers? That is a hard question to ask people who are genuinely trying to do something good, to be of service to others. People who are filled with joy at the thought of offering something to others. Speaking out to simply get the hard questions on the table can be an alienating experience. For those readers familiar with PASSING assessments, I have a good colleague who often says that a PASSING level 3 is the most we can expect, and is good enough,sometimes. We need to be careful that we look hard, though, and truly know what we are sacrificing. Even when it hurts.

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

Quote

“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

Quote

“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.