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.

 

 

 

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

Image

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.

Service in the Long Hall

Quote

“Service is the rent we pay for the privilege of living on this earth. It is the very purpose of life, not something you do in your spare time.”

– Shirley Chisholm (passionate activist, educator, and groundbreaker who was the first African-American citizen to run for President of the United States…in 1972, by the way)

These words have got me thinking about the nature and meaning of service. It can mean everything from the vocations we pursue (customer service, human service, landscape service, mail service) to the voluntary giving of oneself in support of another.

In fact, even the idea of “volunteerism” can be broken down into types of service – one may serve an organization (like a library, museum, or service agency) or one may serve an individual or a family in a personalistic way. It is this deeply personal idea of serving upon another person which is driving my thinking today, as I offer myself to my favorite and only Aunt Lou in a time of great vulnerability.

At the moment, she is recovering from a stroke and a series of difficult situations, and is staying in a nursing home for 10 days as her family plans for her return home. My Aunt Lou is a woman who simply will not be institutionalized in her mind, or her body. This makes her particularly at risk as she simply will not “get with the program” . Because we know and love Aunt Lou, we also know she needs to be safeguarded night and day, and have done so.

I had this heartbreakingly poignant moment with her yesterday. As is often the case with human service environments, there is a strong staff culture at the nursing home where she is staying. Day and night, there is a lot of friendly talk, laughing and joking amongst the nurses, aides, social workers and others. Some of the people who are living in the nursing home seem to enjoy the repartee, and try to be a part of it. It mostly seems to annoy and confuse my Aunt Lou, who looks at me with a knowing hard look when it happens.

When visitors come, she will say, “You will not believe what has happened to me”. This is no small talk, either. The words are sometimes a long time coming, but with focus and time, they do come. The bells and buzzers and alarms and chatter are constant and terribly distracting to Aunt Lou. They also are frightening and foreign to her, and rob her of her competencies, because she cannot easily hear or attend.

She is intent on walking, and walk we did yesterday, as she regains her strength, works hard to get her bearings and struggles to understand how life went so bad so quickly for her. On the walk (as she calls it “down the lane”) down an endlessly long hallway and maze of confusing passages and doorways, we passed the busy and active nurse’s station. As is usually the situation, many people in wheelchairs encircle the perimeter, perhaps enjoying the staff-centered action that is happening in front of them.

Moving forward with determination, but so fragile at the moment, Aunt Lou tenses as the staff burst out in uproarious laughter. She takes a stagger step, which nearly upends us both. Whatever has happened, it is very, very amusing to those involved. The clustered onlookers laugh as well, but are not part of the joke, at least not fully, and they seem tentative.

A flash of confusion comes over my strong Aunt’s face, you can see it quickly changes to a more determined look as she puts her head down, bears down on her walker, and moves more quickly. The aide who is walking alongside us, in explanation, mentions that the joke is that one of the nurses just “broke wind”, although that is not the language she used. It is one of Aunt Lou’s euphemisms. As we keep moving, the uproar continues behind us.

The trip through the confusing, endless hallway continues, but something has changed. Aunt Lou seems somehow smaller, tentative, unsure of herself. We finally make it to a grouping of chairs and sit next to each other. She keeps glancing at me as if for reassurance. 20 minutes go by, and by now her hands are trembling. The words come out, eventually. She finally just had to ask. “Betsy, did I break wind?”

I was nearly overcome with empathy as I realized the impact that the scene at the nurse’s station had on my Aunt Lou.

What does it take to give personal, respectful service to another human being? Can it be done in group settings which require people to conform, and there are people in the role of “staff” who are trying as best they can to cope with a situation which is hard to bear? For me, if I am going to have a professional relationship with vulnerable people, it seems urgent for me to have some relationships with a few people over the long haul who live on the margins, and for whom I have no professional obligation to at all. Shirley Chisholm had great personal empathy for and identification with those at the bottom of the social ladder. I suspect she also had personal relationships which made her keenly aware of the need to stand beside and behind people.

My Aunt Lou has always been a powerful role model to me – she raised 6 children on her own, on a social worker’s salary, by the way. She is strong, capable, so smart, and like me, a rugged “horsewoman” and a strong Quaker. The things she is showing me now hurt, but it is the kind of hurt that will strengthen my ability to keep in focus the importance of personally being of service.

Doing/Undoing

Social Role Valorization theory has an entire theme which covers the power of unconsciousness, specifically around the realities of how people come to be at the bottom of the social ladder, and what happens to them once they get there. I have always found this theme fascinating and also unsettling, with good reason.

The big idea behind it is that social devaluation (assigning a low social value to others) is largely transacted with a surprisingly low degree of awareness on the part of any of us, included devalued people themselves, service workers, and, well, most everyone. Most of us don’t want to admit that there are some people we simply think are worth less than others, and so we tend to deny this reality, or suppress it, or “sugar coat” it to soften it. This result is that the bad feelings that much of society holds towards certain groups of people gets expressed in action, or symbolically.

One of the interesting and scary corollaries to this is the tendency for what Dr. Wolfensberger has called “doing/undoing”. This means that when helpful action happens geared towards making vulnerable people’s lives better, another action is likely to occur which “undoes” the helpful action. This allows lots of efforts to happen by really accomplished change agents, while maintaining the status quo of poor life circumstances, and assuring that real forward movement is puzzlingly difficult to make. The “undoing” is hardly ever directly connected to the “doing”, so the net impact is also not recognized.

This happens on a big scale. Many thousands of people with mental disorders were de-institutionalized from State Hospitals during the 1970’s through the 1990s across the US. Over the ensuing decades, many thousands of people with mental disorders (many of the very same people) have now been re-institutionalized in our prisons in the role of inmate. One could even say that prisons are the largest provider of residential services to people with mental illness these days. Many of the very same people with intellectual disabilities that we worked effectively and with passion for decades to free from institutions are now re-institutionalized as elders in nursing homes. Doing. Undoing.

The net effect remains much the same in terms of the realities for our society and for the people affected by this. We could argue the details and nuances of that, but it is a reasonable thing to say.

Doing/undoing happens in small, individual ways, also. A good friend of mine who has a lifetime of involvement in many and multiple human services since he was a young child is continuously receiving goals, support, assistance and counseling about his lifestyle, his weight, and his need for exercise. People are working hard and with good intention to help him with these issues, and they are important. However, at the very same time, he takes a literal handful of pills every day and night, ranging from anti-psychotics, sleeping pills, tranquilizers to anti-depressants, mood- stabilizers, and anti-seizure drugs. Over most of the course of his 35 years, he has taken these drugs compliantly and with little review or oversight or question by anyone. Now he experiences all the conditions we know come from this – weight gain, lethargy, liver damage, partial kidney failure, COPD, congestive heart failure. Meanwhile, everyone in his life is making Herculean efforts to get him to the gym and snack on carrots, and no one is helping him lessen that handful, or even thinking about it. Doing. Undoing.

It pays to understand that this doing/undoing is at work. I came across a less toxic, but revealing image the other day, and I think it’s a pretty good example of the phenomenon. Pictured in the photo below is a colleague of mine, who finds himself in a predicament. Can you help unpack what is happening here in terms of doing/undoing?

(Photo used with permission and perhaps a bit of a wry sense of humor)