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.

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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?

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.

A Hair’s Breadth

The simple facts of vulnerability and safeguarding seem to keep presenting themselves in the world, perhaps so we can learn what we need to from them about being of service to others. The explosions and death and terror caused by people towards people reminds me of the fragility of life, the thin line between everyday lives and chaos, and the seeming randomness with which those we love can be struck down in a moment.

What protects us and shields us to any degree? What about people who are living on the margins, on the very edges of society, people for whom things can go very badly, very quickly? I am thinking this morning of that young man – Robert Saylor- who was in Regal Cinema Theater #16 in Frederick, Maryland on January 12, 2013. He was 26 years old, had watched and apparently enjoyed the movie “Zero Dark Thirty”, and wanted to see it again. A movie theater employee called mall security, which consisted of three off-duty policemen (not in uniform), moonlighting as mall security guards. Mr. Saylor, who had Down Syndrome, was handcuffed as they tried to forcibly remove him from the theater. The scuffle that ensued resulted in Mr. Saylor being held facedown on the floor while handcuffed, and he was soon dead by suffocation. Observers state that before he died, he cried out for his mother. Blame has spread far and wide – lack of education for security officers, police mindsets, predjudice against of people with disabilities, lack of awareness of physical vulnerabilities of people with Down Syndrome, and more.

What I have heard may be true, and even if it is not completely true, it matters as we try to figure out how a chain of events like this could occur. It is said that Mr. Saylor was accompanied to that movie by a service worker. It is also said that, when it became clear that he was not leaving the movie theater, she decided to give him some time while she went to retrieve the car to pick him up in the front of the theater. By the time she had come back, it was too late. I can read some details into this scenario. I can read that Mr. Saylor had done similar things before – he doesn’t like to leave when he is having a good time. I imagine that she knew him pretty well, and knew giving him some time and space would be helpful. At some point, she may well have simply bought two $11.00 movie tickets and sat down for another round of Zero Dark Thirty, had she had the chance.

At some point, she walked through the lobby of the theater, and for whatever reason, did not to mention to any theater employees that Mr. Saylor was still in the theater, that he was waiting there until she came back, and that she would indeed be back in a few minutes. Perhaps she thought of this, and decided against it. On another day, she might decided differently. Perhaps if there had been a welcoming face on her way out, she would have, perhaps not. Had she, though, things would, in all likelihood, have turned out differently, and perhaps the Saylor family would not be grieving the death of their 26 year old son.

No blame intended from me – what lays me low is the realization of the hair’s breadth that separates people with disabilities and other devalued conditions from disaster. When we decide to walk with such people, we carry a responsibility of knowing that each and every action we take in that person’s life has exponential weight in terms of the consequences. Those consequences will be born quite heavily by the people we are in service to, and perhaps never even be noted or appreciated by those of us in service to them. This calls us to be wide awake and aware of the seriousness of the roles we have in the lives of the people we serve and are walking with.

All the policies and protections and laws and rules that many of us have to contend with can indeed provide important frameworks for protecting and safeguarding those with fragile lives and shaky life circumstances. However, acute personal awareness of what we actually DO in the lives of others moment to moment, and how these actions may impact the people we are serving adds a layer of safeguarding that is fallible and itself uncertain, but powerful and potentially life-saving.

A Seasoned Mind

Curiosity is a hard commodity to come by these days.  Many of us seem to be backed into our respective corners, surrounding ourselves with like-minded people, and reinforcing our own positions on most everything. I have noticed this in myself, increasingly, as I seem to harden in my positions on most everything. Maybe this is a function of age, but maybe it is also a function of the “the age” in which we live, or some combination of the two.  Having two teenagers in the house is teaching me important but irritating lessons about learning to hold my tongue and listen, even when my response just wants to burst out mid-(someone else’s) sentence.

There is value in being quiet when your inner voice is clamoring to be let out. One of the benefits is that sometimes you then get another chance to be heard later, and your reaction is more “hearable”.  Reflecting on what I have heard often gives me a chance to discern more clearly what is being communicated, and adapt and connect what is being said to other ideas I may have.

This is a hard practice for me – but I have there are two places I look to for wisdom and strength in this.  One is from my Quaker faith tradition.  A practice often used  is the “seasoning” of ideas.  If a new idea or perspective is brought before the community, the members will rarely act upon that idea with immediacy – they will instead “season” it by a number of methods – perhaps ask a group of people to look into it, perhaps reflect in silence on it, perhaps agree to read something related to it, perhaps arrange an educational session, or just simply agree to let the idea “sit” for awhile amongst us to see what happens to it.  Will it grow and gain steam, or will it lose heft, as some ideas should?

A second place I can look to is the teaching tradition within the Social Role Valorization leadership practices.  The are many facets to development as an educator in “SRV” which are consciously taught, role modeled and practiced repeatedly.  One specific area which Dr. Wolfensberger and his colleagues have focused on in developing trainers about is how to respond to questions posed during a workshop. Many presenters, myself especially, tend to feel pressured to give a comprehensive answer right away and fully satisfy the questioner. My mentors have advised and worked with me to wait, to collect myself, to listen fully to the question, and to listen for “the question behind the question”.  I love that last skill especially, and work on it consciously. Then, stop and breathe, consider what the audience has been exposed to so far, think through what they will get in the up-coming material, and respond with clarity about what points you will make. That’s a big task for me, and good for me as well. 

All of this is to say that, if we want things to change for vulnerable people, we all have to see outside the boundaries of our collectivities and ideological groups, no matter how dear they are to us.  In fact, if change agentry is what we are about, then we are expecting others to engage in flexible thinking that shifts and opens their minds to a larger picture.  My teens will appreciate it if I can master this a bit more in 2013.  Perhaps they will respond in kind.

Wishing you all a 2013 in which you prosper and thrive in all the ways that count, along with those you love and care about.

I am only one, …

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I am only one, but I still am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.

Helen Keller

This quote moves me this morning, as I prepare for my day with a bit of stillness and reflection. I need respite away from from hard and bitter images of carefree and precious 6 year olds who have lost their lives at the hands of another, and the families who have lost beloved sons and daughters, and the often angry, frightened words of our citizenry, struggling to understand and assure each other that this will not happen again.

Identification is heart work. It is also hard work. It involves going beyond simply putting oneself in the shoes of another, but actually trying to be as an extension of that other. In a world that separates and categorizes, a society that makes sense of who we are by making it clear who we aren’t, it is a hard task at times. Many people are flailing at answers – what can we do now, who can we blame. I am doing the same. Many people have taken strong positions on specifics – more funding for mental health services, more police in schools, more prisons, more stringent gun control. I am hesitating, on purpose, at this time in my life. Helen Keller’s words strike me as ones I need to pay attention to. Anger, fear, rage, and blame, and most of all a sense that a threshold has been crossed in our country. One that we will respond to as a people, hopefully in the fullness of the wisdom and depth that resides in each of us, and is empowered and activated when we work together.

I am spending time today reconnecting with people in my life with whom my connection and bonds have weakened, because of distance, time, and, mostly, the pull of a busy and demanding lifestyle. Part of what feels true to me at this time is that we live in a society where we must connect with each other and strengthen our commitment to protect, serve, safeguard, and attend to each other in a strong way.

It seems like our society is held together by increasingly fragile human bonds. Where alienation from each other, lack of identification with others, and huge pressures to buy into (literally) a materialistic, impersonal value set which makes us all come up empty time and time again, no matter how much we spend, we buy, we own, we eat, we watch, we earn. We keep coming up empty and disconnected from each other. Perhaps that makes for a society where people do horrific, inconceivable things. Horrific acts then lead a fearful, disconnected citizenry to demand that we, for example, arm our teachers, pre-empt violence with violence, retreat into our smallest circles of allies, and maybe hide from each other. I worry about how this will impact and implicate the already marginalized. This week, I will re-connect with some people who I have drifted away from, and will widen my circles, at least a little. That I can do.

Best wishes to you all for holidays that bring us together, cause us to celebrate each other, and take comfort in knowing and seeing that there is much good in the world, and in human beings.