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.


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


“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.”


“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.




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.