Remembering Judith Snow, a phenomenal woman
On Sunday night last, May 31, 2015 at 10:45 Judith Snow passed away, she was a friend, a fellow faculty member of the ABCD Institute, an artist, theologian, thinker and maker of mischief and fun. This week’s blog is in memory of her: a most sensational and gifted woman who will be deeply missed and long remembered.
As John McKnight rightly said yesterday in an email to the ABCD Faculty, her greatest legacy was her life. In memory of Judith the Nurture Development team and I wanted share two extracts that I believe encapsulate much of what she believed and championed.
The first is an extract from an interview I did with John McKnight who names Judith as among nine people who have most influenced and inspired him. The second is a piece she wrote entitled: Creating what I know about Community where she explains what ‘gifts’ meant for her.
Interview Seven – Judith Snow
“We never have the foggiest idea what people need until we give them those unique resources that allow them to be an active part of the community making their own choices. Then we’ll see what they need of us.” John McKnight.
CR: You probably know this quote by Upton Sinclair, a great iconoclast and journalist by trade, he said, “A man will never understand that which his salary depends on him not understanding.”
JMK: Excellent. You could start this whole part of the book with that quote! Can I add one other example that goes with this? We’re talking about a radical understanding of the institutional problem. Judith Snow was also a great influence on me.
Judith is primarily an artist. She is also someone that many have labelled throughout her life. She was born with a capacity to physically do very little with her body. As Judith says: “As a baby, I had full strength for a baby. But my strength never grew with me, so now I can feel everything and move very, very little.” She lives her life using a wheelchair and needs 24-hour attendance to enable her to participate.
So in a professional world, they would label her as totally and vocationally disabled. They’d have a whole set of labels for her, portraying her as totally incompetent.
Nonetheless she led the fight in Canada to get labelled people income instead of services. And with her circle of support that she built around herself she became the first person in the province of Ontario to get an annual personal budget from the government – $120,000 – to use for her own wellbeing.
Now she also is a wonderful speaker and trainer and enabler, so she makes money that way too. And as she has to have round-the-clock support, she needs more money than most people.
After she had been on a personal budget, rather than a social service, for two or three years I remember asking Judith: “Tell me how many services for a disabled person you have used in the last year? Because you are now the empirical proof of what is needed as against what professionals say you need.”
And she said: “In the last year I have used two services that are unique to me. And one of them I didn’t want. So the first one was my very complex wheelchair. I have it because I don’t walk so it’s related to my disability and so I went to a company of mechanics who understand wheelchair technology and I went to them because I needed them.
The second service was that every time I want to go somewhere on an airplane, they insist I talk to their disability specialist. I don’t need them but I have to deal with them in order to get on an airplane. But as regards all the services that I was dependent on before, I’ve used none.”
And this is a woman who is as physically dependent as you could possibly be.
So if you looked at her you’d think she might need a whole lot of compensatory stuff. But all the system did was justify itself by saying she needed this complex set of services, when what her life demonstrated was that mostly, she didn’t.
The service system needs her. She doesn’t need it.
The Careless Society, Community and its Counterfeits is pretty critical of the service system, so when people say to me, “Well, don’t you think there is some place for systems?” My answer is yes; but only after so-called “clients” have adequate income.
Systems must be prepared to first say: “You’re going to have the income to make all the choices you need to make a regular life”, (that’s what Judith’s income allowed her to do).
We never have the foggiest idea what special services people need until they have those unique resources that allow them to be an active part of the community so they can make their own choices. Then we’ll see what services they really need of us.
Judith is the best proof of that. As far as she’s concerned she rarely uses specialised services. Yet in the whole architecture of service institutions, she’s the poster child of neediness! So she is the great living proof that the huge edifice of specialised services is largely not needed by many labelled people. What they need is what everyone needs: adequate income, access to an everyday community and the relationships they create there, and, of course, choice.
Systems focused on people who are labelled are an alternative to choice. They say: “Your choice is us. We control the money and we run the zoo and you’re living in it.”
Judith and Jerry taught me so much about thinking radically. I learnt that kids were made bad by ‘great’ reformatories and people were made disabled by disability services.
Here is a list that Judith wrote to remind us of the gifts and assets that people who are vulnerable to rejection commonly bring to community:
Making people feel happy
Providing a home (to the Personal Assistant)
Slowing people down, reorienting people to time and place
Helping people appreciate simple things
Helping people appreciate their own abilities
Pushing people to be better problem solvers
Causing people to try things they’ve never done before
Causing people to research things they never encountered before
Reaching out to people and breaking down barriers
Asking questions that everyone else is too shy to ask
Bringing people together who otherwise would never meet
Providing jobs to people who want supplemental income, like artists
Providing jobs to people who need to work odd schedules like homemakers
Providing jobs to people who otherwise have few or no marketable skills
Often very forgiving
Often loving and inspiring love
Offering opportunities to do something that clearly makes a difference
Reorienting values from successes to relationships.
Judith goes on to say: “Individuals have unique gifts and they may not have all of the above common gifts. Nevertheless people often privately mention receiving these gifts after getting to know someone labelled disabled. Imagine if we went public about them and intentionally built these gifts into everyday life.”
In this second extract she goes deeper into the idea of gifts and offers us a beautiful yet probing insight into the power of a gift oriented perspective:
Once my father told me that in ancient China the very rich or powerful families would bind the feet of young girls. As these girls grew up they became unable to walk more than a few hobbled steps. If a woman were truly rich and powerful she would give up walking altogether and she would also grow her finger nails until her hands were heavy and functionless. She would be carried about all day by slaves who bore her chair and her cushions to support her hands. They would feed her and look after her every need.
Now what is interesting to me about this story, and the reason my father told it to me, is that my body works as if I were one of those ancient Chinese ladies. I get around in a fancy motorized wheelchair and a van adapted with a wheelchair lift. I type on a computer with a breath control that reads my puffs and sips as Morse Code and translates the code into letters and computer controls. Otherwise my every physical need from eating to driving the van must be met by a team of attendants. These attendants cover a 24 hour shift and their wages are funded with government dollars.
One critical difference between my life and that of an ancient Chinese lady is that she was considered to be of value in her society just because she was there. Her mere presence as a symbol was of more value than any other potential contribution she could make and she was supported and shaped through great suffering to become that symbol.
In my world, people are valued according to their conspicuous function and activity. Few things are viewed more negatively than disability in my society. People with apparent disabilities are usually subjected to endless efforts to “cure” them or…. to educate them out of their differences. All the time this is going on they are also being segregated out of everyday life and being denied ordinary, obviously desirable experiences such as work, play, income, friends and intimacy. In a great many parts of our society people with disabilities are also being selected for death. Today doctors regularly use amniocentesis to discover Down Syndrome ….. or Muscular Dystrophy, (which I have), or Spinal Bifida, and then recommend abortion for this reason only. Others are denied ordinary health care or important services, leading to death from treatable infections, starvation, etc.
Many years ago I started to ponder how one society could value one physical and mental state so highly that people would put their children through torture to ensure they attained it while another would value the same state so negatively that it would kill any children if possible if they happened to develop it. Even more important to me, I began to try to figure out how people could be persuaded that disability is not a threat. Although disability may be viewed as negative itself that does not mean that the people who are disabled could not be seen as also embodying other possibilities. On the other hand is disability so negative as to have no redeeming qualities to celebrate.
Here is an important clue I had. People who know a person with a handicap very well, someone such as a parent, sibling or a family friend, will often say about that individual that they are a wonderful person and that this was not apparent to them at first. For example, a young man I know is a person who doesn’t speak. He is attending a neighbourhood high school. His support circle publishes a newsletter for family and friends to tell of his goings-on. In a recent edition of his newsletter the support worker made a point of saying how unexpectedly enjoyable her time with him has been.
My point is both that people virtually always discover something that brings them pleasure when they get to know someone who is labeled handicapped and that this pleasurable discovery virtually always comes as a genuine surprise. But when we meet new people in general we usually do discover something about them that we like. Hardly ever do we hate everything about someone both on first meeting and after getting to know them better. So why are people so surprised by this discovery when confronted by a person who is called handicapped?
By following this question I came to this realization. Everyone is gifted.
This realization is partly masked from us because we usually think of gifts as being extraordinary qualities. We think that only a few people have them. But giftedness is actually a common human trait, one that is fundamental to our capacity and need to be creatures of community.
Gifts are our capacities to create opportunities for ourselves and others to interact and do things together, things that have mutual meaning. So, for example, if you are interested in an evening’s fun of softball and you have six people on your team you have an opportunity to offer to several people, including some innocent bystanders who might just end up watching. But you can’t play softball without at least seven people per team. So when the seventh person comes along, willing to play, that person’s presence is a gift to many other people, even if she or he doesn’t play very well.
Our presence is the fundamental gift that we bring to the human community. Presence is the foundation of all other opportunities and interactions, of everything that is meaningful.
In addition to our presence each of us has a grab bag of other ordinary gifts that allow for us to create and participate in daily opportunities. From getting up, making breakfast, washing dishes or loading a dishwasher, talking on a telephone, writing on a piece of paper, listening to another person, getting from one place to another, enjoying some music, expressing an opinion, going to a meeting, playing with a baby or having fun with a friend, a variety of simple activities taking place in ordinary places on ordinary streets make up the fabric of the vast majority of our work, family life, private life and public contribution.
Beyond ordinary giftedness there is extraordinary giftedness, the kind that extends opportunity for interaction and meaning to a larger number and variety of people. One person is not just nice to be with but is a truly funny comedian; another doesn’t just get around but dances on skates beautifully; another not only shows up for the PTA regularly but has ideas that are engaging and changing the face of the local school board.
Each person has a variety of ordinary and extraordinary gifts. The people whom we call handicapped are people who are missing some typical ordinary gifts. However such people also have a variety of other ordinary and extraordinary gifts capable of stimulating interaction and meaning with others.
Seeing disability somehow prevents us from seeing the gifts in a person, at least at first. And so we are surprised when we find ourselves experiencing pleasure, meaning, and opportunity in the presence of a disabled person.
Furthermore giftedness grows from different roots making it possible to speak of three different sorts of gifts. First, some gifts seem to arise simply because of the unique makeup of the individual. One person picks up whistling at age 5, another has always enjoyed listening to other’s stories. Secondly, some gifts are tied to a general characteristic. Only women bear babies. Lastly, many gifts arise from the efforts that an individual makes to deal with her or his experience. After a long fight with cancer a person may develop a high tolerance for pain, an appreciation for beautiful sunrises and the desire, time and capacity to visit severely ill people.
Hours before Judith passed, she was planning her trip to Europe to be with us for the ABCD Festival and many other speaking engagements. I know she was hugely excited to be crossing the ‘pond’ to be with us. So, we will be dedicating the Festival to Judith, and creating the space to raise a parting glass, and to celebrate our friend, mentor and a phenomenal woman.
Go well my friend…