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not just “inclusion for inclusion’s sake” but to be actually needed…

September 8, 2011

At the end of a long summer I am thinking of stories of inclusion, when someone mentions the phrase “inclusion for inclusion’s sake” and I am taken aback for a moment, but then started thinking of events where I’ve seen children or adults with disabilities, usually accompanied by staff who stay very close, in community places, but who are not actually part of those groups.

It made me think of a continuum that John Lord talks about – moving from isolated from community (institutions and institution-like living), to being in the community, to belonging in the community, which some have called, “being, becoming and belonging.”   My own vision for the future would include leading, “sharing the leadership of the community.”

Often, in a kind of socialised auto-pilot response to disability as difference, children and adults have been and still are placed in “special” programs with disabled peers.    Examples of such programs range from segregated classrooms in schools, to specialized physical education (such as swimming lessons for children with disabilities, or adults), specialized art programs, or programs that are “like” typical activities but designed for and geared towards children or adults with special needs, such as a variation on cub scouts or girl guides that has reduced requirements, or cooking classes for adults with disabilities.

Such groups are often well-intentioned and that they can be a lot of fun often makes them, for the participants and their friends, hard to argue with.  I’ll focus on congregational life for a bit, and then move on to makeup!   For example, a church in our area is designed to meet the needs of a congregation with special needs.   It is one of my favourite churches to visit as the services are simple, joyful and full of fun.   I love the open-ness of those who feel that this population is their ministry and they also have great snacks.   It is one of the few places where I can remember the words to hymns, some of which are just two repeating lines.  Another very positive aspect of the church is that if any of the special needs congregation require support or advocacy, the minister or one of the other folks who assist with the ministry, will come to meetings and speak up on behalf of people.   As well, if someone is passing away, the minister and his helpers will be there to comfort during palliative care and the services afterwards.

The congregation of this church loves to be together, and no wonder.  However, while there are certainly situations where children or adults may choose to spend time with peers, this should always be a choice, not an assumption.   Most if not all educational and recreational programs can have a modified curriculum (teaching goals and strategies) that allow for people to be with non-disabled peers.

A next step would be the inclusion of someone in a group of peers, but perhaps off to the sidelines, something of a spectator and not really part of the group.    I think we’ve all seen what is referred to as “inclusion for the sake of inclusion.”   At a church we’ve attended a young woman with a disability sits in the front row, in a wheelchair, with her head bowed down and there is almost no interaction with the congregation.   When I went up to chat with her, her mother quickly came to tell me that she doesn’t talk, which I knew, and I said that it was fine, there were lots of ways to communicate.   Other people then came up who had obviously been trying to figure out a way to meet and interact with her, and I introduced them.   At this point the mother told everyone in the group that I was a professional and obviously knew about augmentative communication and that’s why I was able to  communicate with her.   “Oh!” they said, and moved away, because they were not professionals and didn’t know about augmentative communication.   All I was really doing was speaking slowly, holding her hand, including her in the conversation.   It was hardly rocket science.

On the other hand, a mother of a profoundly disabled young man with no verbal language decided to bring him to a “regular” church, where they took on the volunteer position of handing out weekly newsletters as people left at the end of the service.   Her goal was to connect him with the town, and her method was for them to take the very first volunteer position that came up.   This just happened to be it.  He quickly got to know all the congregation, and was connected with people all over town.   When, because of some issues in his life, he suddenly required someone experienced in negotiating with government, a lawyer, a dentist, a doctor and then a internist, they were able to find all of these from within the congregation he had become part of – all of them knew him, wanted to assist him, and felt they were part of his community.

Each option can be said to have its strengths, but if the goal is inclusion and interdependence it may take time to find the right setting for community building.   A young woman with autism was repeatedly ushered to the children’s section of her church, placed in a Sunday school class of much younger children, and dissuaded from joining the choir or attending the adults’ coffee and tea meeting.   When she finally asked the priest about her perception that she was being treated differently, he told her that he thought of her as one of “God’s eternal children” and was glad to have her in his flock, but obviously had no intention of rethinking her role.

After discussing this disappointing conversation with her network, she decided to try a different church, where she was immediately connected to a young people’s group, and then sought her out as an asset to their choir.   The congregation obviously felt that they were enriched by her presence.

Interestingly, it was the goal of the same young woman to become a makeup artist.   Repeatedly, she was told by colleges and vocational trainers that she would not be able to complete the kind of trades college courses she’d need to qualify, and that she should set her sights on something like learning to work in a kitchen or janitorial department.   On her own, she became involved with one of the largest makeup companies that specialize in “at home” parties and make-up sales, where she found that many of the other women who were involved were of different ethnicities and were excited that someone with autism was going to join them.    They immediately started brainstorming how they might support her, involving her in an ongoing mentorship with a tightly knit group of women concerned to utilise her skills.  They supported her to host parties for her friends and their networks, at which she would do makeovers and demonstrations and she became an excellent saleswoman, although she would always require help to fill out order forms and figure out invoices.

This experience gave her the confidence to approach a make-up and body company that had a great reputation for social consciousness where the manager took her seriously as a job applicant and was able to modify their training program, an impressively step by step curriculum about all their product lines, to make it possible for her to qualify for ongoing employment there.    For each product the regular training program had a written component, a visual guide with photographs of the product being applied, a video component showing how salespeople demonstrated the product, and then a self-test, written in plain language as so many of their employees had English as a second language.    The only amendment the store manager made was to replace the self-test with a more facilitated test, in which the young woman would demonstrate with another staff, or a friend that she’d asked to drop in to the store, how to apply the product and how she might offer it for sale.

The store manager, who had a good grasp of working with people’s goals, was able to assist the young woman to accomplish her dream of doing make-overs for the public by hosting “make-overs for charity” at which the young woman did make-overs all day long for donations given to a local charity.   Everyone involved – customers, the store, the manager, the other staff, the charity and the young woman benefited from this.

At a local community kitchen, a young person who had long wrestled with learning how to follow recipes independently, was paired up with an elderly woman who’s grandchildren lived in another area of the country.    When it became apparent that the young person could not read measurements on the measuring spoons or measuring cups, the grandmother said, “Here’s how we learned to cook in the old country,” and began showing her how to measure with pinches, handfuls and “a bisell of baking soda.”   Facilitator David Wetherow talks about a similar experience in an essay, “Adult Recreation as a Bridge to Friendship,” in a section called “stop cooking and start looking.”    A local facility based program had a cooking module at which the staff showed people with disabilities how to cook, and during a process in which they were facilitated to look at what other community based options might exist, David and Faye Wetherow suggested to them that instead of just cooking, they might look for opportunities to connect with others through cooking.   The staff “began to envision helping Sara, who loves to cook, find a gourmet group that met in members’ homes to enjoy ethnic dinners and share food, music, and conversation.  If such a group didn’t already exist, they would work on finding people who might be interested in starting such a group, and Sara could become one of the organizers.”   We’ve met several people with disabilities who are part of such roving dinner-party clubs, who attend dinners with non-disabled others in their homes, and then host their own dinner parties in their own homes when it is their turn.

One of the folks that we have supported left her centre based program to volunteer at a lunch program for elderly neighbours.   The woman who ran the program loved to cook for large groups of people – she loved everything about it – she loved shopping and finding great deals, making up menus, cooking in big pots and setting out large platters and tureens of great food for people who had trouble cooking nutritious  meals for themselves.   The parts she did not like were serving the food, talking to people who were often lonely and repetitive, and running the dishwasher.   Our young woman was charming, loved serving food, and was captivated by everything about the dishwasher – the steam, the noise, the dishes going in dirty and coming out hot and clean and ready for stacking.   She thought it was magical.   The lunch program manager asked if she could come every day, instead of just one a week.   “Could I?” she asked, thrilled.   For the first time in her life she was not needful and the recipient of help, but the person who was needed and helpful.

Often people with disabilities suffer from a kind of “conflation” – because they have a disability assumptions are made about what they can and can’t do.    One young man was excited about a summer computer camp in which children would make video games over the course of a week.   Because he had a Special Education Assistant at his school, the teacher, the Resource teacher and the Special Education Assistant called for a meeting with his parents to say that they wanted to make this possible for him, and they’d already made some calls.   They’d found an alternative class for children with disabilities, that was about computer skills, but the teacher would support him to learn video game design.   Alternatively, the Special Education Assistant had called the community center that was hosting the video game class and offered to come in for that week, either as a paid staff or a volunteer, to support him, “for those parts that would be frustrating for him.”    The teacher had already called the teacher of the course to offer to modify the curriculum for the child.

The parents were touched by the kindness and consideration, but said, “You know, he is actually quite brilliant on the computer – it’s a thing he doesn’t need help on.   But thanks and we’ll figure out what to do  and let you know.”   Then they weren’t sure what to do – calls had already been made to the class and the community centre alerting them to the child’s disability.   They found a different community centre, in a different area of the city, where the same class was being held and went there to register him, bravely not ticking off the box that said “My child has special needs” because they didn’t feel he had special needs that were important to know about in this context.    Almost every day, the teacher came to greet them when they picked him up to say what a delight he was in the class, how quickly he was learning, how surprised he was at the child’s knowledge and vocabulary around computers and video games and at the end of the course he made a point of bringing in a schedule of other courses he was teaching in hopes that the child would be able to attend more classes.

The parents knew, from experience, that as well-meaning as the teachers and special education assistant were, that if they had support for him he’d have someone hovering around him, and be markedly different from the other kids, and he’d be treated as someone who required support.

In another city, a program that we’ve had dealings with began a photography workshop during which people with disabilities would go into the community as a group and take photographs, inviting  professional photographers, magazine editors and art gallery curators in to look at their work and get feedback.    Everyone enjoyed this activity and liked meeting all the community members who came to visit their group.   However, alternatively, two self advocates with disabilities who enjoyed photography, decided that they would join a local photography group that had weekly online contests and occasional meetings in person.   They began uploading their photographs, which were admired and liked by the other members, and by the time there was an in-person meeting no one cared about their disabilities.

Finding others who love what one loves is one of the great strategies for inclusion.   John Lord talks about examinations of small communities where dozens of groups of like minded individuals meet to explore, learn and celebrate common interests in almost every area as “affiliations.”   We’ve met quilters, knitters, artists, cooks, potters, photographers, square dancers, singers, gardeners, writers, collectors of memorabilia and public speakers – just to name a few – who have purposefully joined groups where they interact with non-disabled others who love what they love.

Why should they do this instead of joining a group of people with disabilities who are engaged in these activities?   Well, a better question would be “Why not?”   If one had communication or mobility challenges, or if one’s executive functions were slower than typical, would one want to be grouped with a bunch of other people with the same challenges to engage in something that didn’t have anything to do with that challenge?   Or would you rather be with people who were engaged in something you all had in common, but could support your communication, and didn’t have the same problems getting around and could help you figure out things that you had more problems with?

A consideration in such groupings is reciprocity, and this is perhaps the most interesting conversation in the field of supporting people with disabilities: what can one give back?   Jim Diers, author of Neighbor Power: Building Community the Seattle Way, has a couple of great examples of people with disabilities who took on leadership roles in groups of non-disabled people.   One was a fellow who experienced a disability but was fascinated by native plants, and was able to lead a group of local citizens who were trying to remove invasive species from local wilderness areas.   He was able to tell people in his group what every plant was and whether it belonged or not, and quickly became a great asset to the group.   Another was a man with autism who was fascinated by the transit system, who Jim facilitated to take a place on the local transit board.   Because he knew, intimately, not only every route in the area, but every bus and every transit shelter and every neighbourhood where they were located, he was able to support the transit board to make far more informed decisions about what changes they would make to the system.   What had previously been a trial and error system became far more efficient and sensitive to local conditions.

We think of reciprocity as something to do with equations and equal measures.   If I give you an hour of my time, worth $10, then you will give me two baskets of berries worth $5 each.   As we’ve talked to community members who are part of networks in various ways, we’ve found this is not how people perceive it.   In one important learning conversation we were told that a painter, who had come over and painted the fence of a woman with a disability over the course of a week, had been given by her a loaf of banana bread.   “I know she can’t stir the bread, or set the oven to bake it, and that all she might have done was touch the spoon that stirred the bread – but that was the best banana bread ever!”   The best banana bread ever – made so probably not because it tasted “best” but because of the love it was given with, was a reciprocal exchange for hours and hours of fence painting.    Again and again we were told similar stories by people who felt enriched by small things, and were willing to exchange them for bigger things with a sense of complete fairness and equanimity.

Lest we be tempted to rest here, however, we can think of a Seattle Project called Freemont Time, in which neighbours exchanged hours of work and goods and there was a concerted effort to include people with disabilities in the exchanges and they did great, racking up points with all the things they offered their community.   Given the opportunity, they were completely able to keep up with the rest of their neighbours in offering exchanges of value.   One young woman accrued a number of points and then sought out a local writer to tell him that she wanted to use her points to have him write the story of her life, a thing she’d never be able to do.

At this point there are many, if not endless examples, of people who have been included in authentic ways.   It is no longer arguable that regular community folks don’t want them to be involved.   However, oddly, those in the system who are employed to facilitate inclusion will often still argue that it’s impossible.   A good friend talks about a man she knows who was considered to have an obsession with trains.   She says that the staff implemented a program where they would try to distract him with another subject when he talked about trains, reward him if he was able to change the subject, and in the end would say, “Please stop talking about trains, it’s not an appropriate subject right now.”    Then, a new one to one worker was hired who, when the man mentioned a kind of train and a certain route, responded by talking about modifications made to that train model and issues about some coming changes to the historical route.   They were soon blissfully engaged in talking about trains; they began visiting trains and found a whole community of amateur train engineers and they built model trains together.   Invitations came to his house to train lectures, model train openings, contests, train parties and train museums.    His social circle expanded, and so did his opportunities to travel, meet others and learn more about what he loved.   His annual planning meeting, which the previous year had been a table full of staff and professions and almost completely concerned about his “behaviour,” the next year was a room full of people wearing engineer hats and enthusiastically discussing what  they all might do together over the next year.

Finally, to return to the question of “why” people with disabilities might engage with non-disabled peers, one might consider vulnerability issues and community safeguards.   In “old style” thinking, keeping people with disabilities together under the watchful eye of specialized professionals was considered a way to keep them safe, but we know from experience and history that this did not work consistently, if at all.   People in institutions all over the world were treated abusively and their abilities were routinely neglected, while their challenges were focused on almost exclusively.   One of the sad parts of the Woodlands court case for reparation was hearing about the notes in people’s files about what they were able to do, and might be good at, and should be support to try, and how these things were not followed through on, constituting neglect.

Community members who interact with people with disabilities have much less tolerance for what they perceive as mistreatment and neglect.   When we first began supporting people wholly in the community, and not in segregated programs, I took a deep breath and waited for the phone to ring off the hook with calls from members of the community who didn’t want folks with disabilities in “their” spaces.    However, the first (and one of the only) calls I got was from a Starbucks barista, to say that Jack was there with a new relief staff who didn’t seem to know his communication program, and thus was unable to have his usual conversation with the staff team, which was something they and Jack all looked forward to.    “I have a break coming up and I know the communication program well enough to give him a quick orientation – I’m just wondering if that’s okay?”   Yes, I said, that would be really helpful.   In an essay, “Are We All In This Together?” Margaret Wheatley writes, “We may even be waking up to the fact that most people want to help others, want to be generous, and care a great deal about the welfare of neighbors and strangers. We can rely on human goodness.”   Certainly, in the experiences we’ve had with supporting people with disabilities in inclusive situations as people of gifts and value, this has been true.

“not just ‘inclusion for inclusion’s sake’ but to be actually needed…’ is an excerpt from Renegotiating Reciprocity: Supporting Children and Adults with Disabilities in our Families, Networks and Communities, by Aaron Johannes, to be published Spring, 2012 by Spectrum Press.

Jim Diers’ site

Articles by David and Faye Wetherow

For more information about Spectrum’s work: (blog/e-newsletter)

2 Comments leave one →
  1. renee altson permalink
    September 9, 2011 11:37 pm

    thanks for this.

  2. September 16, 2011 6:42 pm

    A good, heavy, nutritional read !

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