“In A Theory of Cognitive Dissonance (1957), Leon Festinger proposed that human beings strive for internal psychological consistency to function mentally in the real world. A person who experiences internal inconsistency tends to become psychologically uncomfortable and is motivated to reduce the cognitive dissonance. They tend to make changes to justify the stressful behavior, either by adding new parts to the cognition causing the psychological dissonance or by avoiding circumstances and contradictory information likely to increase the magnitude of the cognitive dissonance.

“Coping with the nuances of contradictory ideas or experiences is mentally stressful. It requires energy and effort to sit with those seemingly opposite things that all seem true. Festinger argued that some people would inevitably resolve dissonance by blindly believing whatever they wanted to believe.”  Wikipedia

 

I was working on my book on person centred planning and it took a turn into story-telling…  I thought I would share it.

 

It is endlessly fascinating that people with similar sets of abilities and challenges can live such different lives, with different degrees of access and empowerment. One of my long time friends, after years of institutionalisation and then several group homes (for up to 20 people!), now lives on his own with support, works and plays in places of his choice, and has a wide circle of friends. The story of how many friends he has is documented in the section on Circles in this book. Down the street from him, however, a person I know less well seems to have the same diagnoses and lives in a group home where he is ushered about by staff, not allowed in the kitchen, attends a day program where they play with age inappropriate toys and according to his staff, has no friends and family: “He’s just got us.”  I have heard this so often in different planning meetings and projects.  The “us” that he’s got seem not to have effective leadership (in fact, it seems to change pretty much monthly) or accountability for their agency’s funding.  Perhaps even more, a lack of accountability to a society that has an agenda for inclusion (thanks Jane for this idea!).  As a social worker told me once, the day before his retirement, “in all of our contracts for support we have a line about community access and inclusion – but how many times have you ever heard about someone losing a contract because they weren’t doing a good job of this, or even attempting it? Never. Because no one looks.  No one dares to.”

 

If it seems complicated that two people with the same abilities and funding can have such different supports, it is also true that even within the life of one person things can be radically different from place to place and person to person because of their supports or lack of them. This happens so often with people who are in day programs that have different intentions than their home supports that it is a truism. When I have tried to have people moved from a day program into a support more in keeping with their home life, one of the concerns for funders was that “we like the idea that the agencies are keeping an eye on each other and people are less vulnerable.” This kind of thinking, however, a) only works if there’s holistic accountability for quality of life and b) dismisses the idea of collegiality (people not wanting to be critical of colleagues) and c) it privileges a kind of paper-based accountability that isn’t real over the quality of life of the person.  It matters more that the social worker can somehow side-by-side “monitor” (through an absence of feedback) than the quality of the life of the person.  Imagine if that was your life and someone priorised your documentation (or lack of complaints) over your experience?

 

Critical Disability Studies researcher Griet Roets in a fascinating paper, “Unravelling Mr President’s nomad lands: travelling to interdisciplinary frontiers of knowledge in disability studies,” talks about her work and relationship with a self advocate leader and the way the different contexts he finds himself in determine his level of empowerment and ability (Roets). She makes the important point in this paper that often the act of challenging social position is fraught as those who are the person’s network are also their oppressors, and they are dedicated and loyal to them.

 

Here are two stories which I hold close.

 

First, I went to an exhibition of Michael de Courcy’s Asylum, which was a kind of art installation that gathered documents from the history of Woodlands, and its closure, and monumental backlit photographs of residents who had moved out, talking about their new lives in community and the trauma of living in an institution. In the guest book some of those ex-residents (and their families) had written things like “I just want it to burn to the ground” and “I hope no one will experience the abuse I experienced there”, and in between these scrawling, child-like, mis-spelled comments were beautifully written scripted statements that said things like “Oh thank you for reviving some wonderful memories of visiting my grandmother who worked in the kitchens at Woodlands for 30 years. She would serve us cookies warm from the oven in the big sparkling kitchen” and “My family worked for three generations here and it such a gift to see it all again – I hoped my children would work there too, but unfortunately the times have changed.” It was like there was no communication between the two groups, and neither of them were reading the comments of the others. How is closure possible? You can see an online version of this excellent installation here.

 

The second story is that one of the first people I supported to move from Woodlands into the community passed away a while ago. It is hard to convey who he was without using ableist language and concepts but he did not speak, or even gesture. He would take your hand and lead you to things. He had some interesting behaviours, like laying down in the middle of the road when cars were coming.

 

The agency I worked for had used money allotted for a group home to buy a duplex, and money for a van to buy two small cars. His staff were great – the idea that he might be able to learn to indicate what he wanted was theirs – they would put out a block of cheese and the makings for a salad and he would choose the cheese. But then he started choosing salad, and he started to indicate that he wanted to help make the salad and they created a whole routine around it where they would hand over hand chop vegetables, tear up the lettuce, put it in a salad spinner and help him spin it and he would grin… and then he would put the block of cheese on top.  His staff would say, “He has such a great sense of humour!”

 

I knew from his history that he had been “dropped off” at the institution as a baby, at the recommendation of their Doctor, because “he would never be able to do anything.” I am putting quotation marks around “dropped off” because that was the language they used, which we accepted at the time, but later on when I would meet families who told me of having to give up their children for various reasons I realized that these were always hard, difficult, tortuous decisions.  So he’d spent 30+ years in institution wards when I met him. I spent time with him on his ward, so I knew he did nothing there except rock in place and try to avoid the bullies.

 

Right from when he moved, he was fascinated by family life in the houses around him. When we walked down the street he would try to dash into people’s homes, whether he knew them or not. It was a neighborhood of Italian families and on at least one occasion the mama of the family was non-plussed and put down an extra plate for him as everyone was about to eat spaghetti.

 

He went on to learn how to take transit, and later moved into shared living – a kind of contract to provide a family-style home in someone’s house. The families he lived with included him in everything and they were expansive, friendly people so they were always growing their community.  When one family could no longer support him he actually had choices of where he might want to move to within the extended family.  I want to say “enviable” families because they were – no one could spend time with them and not want to be part of them.

 

When he passed away, his families wanted to organize his memorial and they did an amazing job. It was the kind of celebration of life where you think, wow, I hope mine is this good. There was a great video of all his favourite things and people and places and they had a picnic in a park that he loved to walk in. People cried. People came that no one had heard from for years. Everyone held each other.  Some people had disabilities, some people had once worked with him, some were just people who had gotten to know him as he lived his everyday life. Everyone missed him.

 

An extended size van with logos for an agency and for the charity that financed it pulled up and three workers and 5 folks with disabilities came and sat at the table behind us. This seemed to be their spot and they seemed a bit resentful that there was this big crowd of people… who had brought cakes and squares and tarts and salads that he might have made and soft drinks because he had loved them. The staff for the folks behind us pulled out log books and began writing about their days with people. The people they were with sat silent and ignored, watching the party. The staff and the folks supported looked equally unhappy.  Someone came to offer them cake and the staff said something kind of dismissive. Some of the people rocked back and forth on their benches, a behavior we used to identify as institutional because it indicated constant boredom alleviated by the need for any repetitive movement. Some of them were too young to have ever been in an actual institution, so they had learned this in parks and community homes.

 

I remembered that when I worked with him, day after day, I would go home and find myself rocking in my chair… I remembered being worried that our activities were boring him and my supervisor saying to me, “When we are at the point of getting bored with what we’re doing with folks, they are just getting interested and ready to take charge.” The leadership at Spectrum Society were such a gift.

 

At different intervals people from our group would wander over and try to talk to the other group, as our late friend would have done, even though he had no voice (he had a great smile). The group’s staff indicated we were interrupting their note-taking. The folks with disabilities didn’t seem to know what to do. They looked away.  Perhaps that was the saddest part. They seemed to have given up even on yearning and were unable to imagine that others were trying to connect with them. Or, perhaps, the saddest part is that the group of staff were completely unaware of what was going on and that there was a difference between what was happening there and what was happening at our table – which by now had expanded with dozens of lawn chairs and an umbrella and even more food. People had started playing music that he had liked and some people were dancing a little.

 

When I tell students this story, I say that in all our futures, we get to choose which table we want to be at and which group we want to be with. Everyone wants our graduates.  They get to choose the organizations they work with and the teams they are part of, and if they find themselves in the wrong place, they should just go somewhere where their mission statement resonates with your own. But this is an ableist sense of privilege. In the old days, as Lyle Romer has said, we used to know where the institutions were. We could identify them through criteria we knew about – big buildings, uniformed staff, regulated behaviours, systemic disempowerment and a lack of logical consideration that one might be part of the problem… I would suggest that we can still see the institutions, all around us.

 

The graphic for this posting is one of a few I’ve done for community readings of Waddie Welcome – a great story and a great way to start conversations with your neighbours about inclusion and belonging.  There are lots of good resources to support you in this kind of event.

This is part of a series that discusses some of the person centred planning tools I’ve been looking at as I work on a new book.  If you are interested in other tools click on the tag “person centred planning.”