Hi, I've decided to publish an email that I sent to staff at Vita yesterday, after getting permission to do so of course. As a preface, Vita has an annual fundraiser, a cook off, to raise money for United Way. In this fundraiser, people bid to be judges or to be sous chefs ... the bids go surprisingly high as people all over the agency throw their hat in the ring and then people bid to see them in the role. This year something very cool happened and I wanted to reflect on it with the staff. After having done so, I felt that I'd like to share it here with you all. The 'Rights Group' refered to is the self advocate group within Vita. So now the preliminaries are done and with only slight modifications ...
To All Vita Staff and Members
Sometimes I feel very much the ‘old man’ at events within Vita. Such was my feeling when at the cook off yesterday. I looked around at all the staff members there and, of course, at the competitor’s table, and saw such young faces. As Carole and I were pulling out fruits as diverse as pineapple and kiwi and vegetables ranging from snap peas to red cabbage, as we tried to figure out what to do with the orange, I tried to focus on the task at hand. And I did. But even so, I was having to process something entirely different – a process that has taken me until now to both understand and to appreciate. Once I understood, I had to get out of a warm bed to write it down immediately.
When I began working in this field the term ‘community living’ had never been used in reference to people with disabilities. There were few community options, the primary and preferred option was institutionalization. It was during my first job at Glendale, a small facility in Victoria, that I first heard staff talking about community group homes and community day programmes. They had a mocking tone, the idea insulted them. They saw people with disabilities not as people to be included but as a kind of sub-human species that needed to be kept separate from the larger community. No one feared the eventual closure of facilities back then, all were secure in the fact that the community would come to its right mind and those few that lived freely would one day walk the land of the long corridor.
During those days the gulf between the lives lived by people with disabilities and the lives lived by their care providers was enormous. The hierarchy in place was one wherein everyone knew their place in the scheme of things. We, the staff were valued and valuable – they the members were valueless and vulnerable. The interactions were interesting, our contact was one of giving instructions, giving commands, giving criticism, giving opinion. It was in no way reciprocal.
A few years later, finally working in a community setting, things had not much changed. Oh, the setting had changed. Now our service was offered in a neighbourhood not in a facility, but that was a cosmetic change. It was like the ward was picked up, transformed in shape and then set down randomly in cities and towns – it looked different, but the relationship between individuals with disabilities and their staff had not really changed. The gulf was huge. Immense.
Over the years my career grew and changed and suddenly I was working and consulting in agencies all over the North American continent. What I saw, I didn’t really even question, staff were staff, clients were clients (the term ‘member’ would never have been used then). Until one day. I was speaking at a conference in San Francisco. One afternoon Joe and I slipped away and were in Golden Gate park strolling around and chatting. I saw a group of people with disabilities tied together – one wrist tied to another’s wrist – and walking through the park, following along behind two staff. At one point the staff tied the first in the group to a water fountain and left the group standing like cattle, staring vacantly making themselves absent from the world and the experience of degradation. The staff, unaware of the horror of what they were doing, went and sat on a bench and had a smoke. I approached them and asked what was going on. They explained, proudly, that they were staff who worked with people with disabilities (that’s not the term they used but I will not write here the term they did use) and that they were on their break.
My understanding of hierarchy that day changed.
Hierarchy damages people.
It damages those at the bottom.
It damages those at the top.
Everyone gets hurt.
Years later I was asked to do a review of an agency. I had to rummage around through old and dusty files to find the report I wrote, but I have it. Here’s what I wrote: ‘The only true measure that an organization is growing is in the relationship between people with disabilities and the staff who provide them service. It should be that every year the power difference, the respect difference, the valuing difference between the two groups should diminish. Our contact with ‘people’ who have disabilities should change us, it should bring us closer to the understanding of the commonalities that exist despite differences. We should be changed by our experience, that change begins with a rejection of the hierarchy imposed on us by a society that does not value difference, a rejection of the power dynamics thrust upon us by roles created within systems, we should begin to see ourselves as those who support, not those who control. The hierarchy will never cease to exist but it can cease to influence our actions, we can do things that actively challenge the expectations we have of each other and of ourselves. If, at the end of every year, there is not a shift toward equality away from inequality, the organization has ceased to grow.’
The report wasn’t accepted by the agency, and though they paid me for the work, they were angered by that summation. Even so, I didn’t change it because I believe it. I believe that we in human services are in a field of endeavor where our own personal growth is part of the process, that we all need to be constantly changing and being changed by our interactions with each others and with those in our care. It is one of the hidden benefits of the ‘helping profession’ … the byproduct of ‘helping’ is, of course, ‘being helped’.
I believe that our Rights Group has had profound effect on us here at Vita. By asking us to change our language, from client to member they were asking for more than a semantic change, they were asking for real change. They chose a word of ‘belonging’ a word of ‘togetherness’ … they could have chosen from a thousand of other words, but they chose a word of inclusion, not a word of exclusion. In that single word they expressed a desire for us all to belong to an organization wherein respect was expected and inclusion wasn’t extraordinary. It was a lot to ask for. It was a lot to hope for. It was a change in language that asked for a change in attitude. The hierarchy within Vita was shaken the day that Manuela and the board accepted the request. An act of defiance from member to staff member to board member was undertaken, defiance against how all of human service is structured. I knew then, that we would all be different as a result of the fact that people with disabilities within our organization, our members, now, formally, had both voice and influence.
Then there we were at the cook off. I did not know until being there that one of the sous chefs and one of the judges that had won seats through an intense bidding war was a person with a disability, was a person in care, was a member. I did not know until that day that this year the cook off was different than last year. Our members didn’t sit and watch, our members participated equally in both judging and in cooking. Our members did this because of, and only because of, the action of Vita staff. Vita staff had supported them, voted for them – with money, in becoming full participants. You all are too young to really understand what a profound act, not of kindness but of revolution, the inclusion of members in a formerly ‘staff activity’ was. It was something simply done, not planned out, not manufactured. It was something that only occurs because of growth and change.
It was something that if described to me during my first employment at Glendale would have seemed like science fiction.
It was something that if described to me during my first work in a group home would have seemed like a pipe dream.
It was something that I thought I’d never see.
But I did.
I have always been proud to work here at Vita, but I left the cook off having lost the competition but having won something of incredible value. I take away with me, as I consult to other organizations an understanding that deep and profound change can happen. That organizations that choose to can grow and grow and grow. That the ‘idea’ of respect can take human form. That the ‘idea’ of equality can be demonstrated in spontaneous action. That the ‘idea’ of inclusion can be a matter of course.
So, as I peeled beets and chopped eggs, as I sliced peppers and shelled peas, I also allowed myself to experience what it's like to be in a world where difference is acknowledged and celebrated. It was an incredible feeling for me.
So … the ultimate point of this email …
thank you all from a tired old man.