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.