welcome to the December 101 Friends Newsletter

Thanks to Shirlane Colban for this wonderful Santa-Frog! www.shirlanecolban.com

Hello friends!   I’ve just come back from walking the dog around the neighbourhood and already people have got their holiday lights twinkling and some of them have Christmas trees in the window – and, as I write this, it’s not even December yet!   Eek!

Different folks have different holiday traditions and all of them are important to us and to the networks of support; they are ways to bring us together, again and again, year after year, and deepen our connectedness by repeated experiences of something that is the same and yet, because we are always changing, different.   Last week we went to a “whimsical gift exchange” that, although it’s only a couple of years old, we’ve come to look forward to.   People bring things that they no longer want (you’re told not to buy anything for the purpose), wrapped up nicely, and we take turns choosing  a mystery gift and unwrapping it.   People getting gifts later in the game can go around and take someone else’s gift up to three times.   If someone takes your gift, you can choose a new one.    You might end up with Joanne’s baking (amazing) or this very odd set of picnic plate holders that turned up last year and then came back again this year like a bad penny.   What fun!   If we’re lucky those picnic plate holders will turn up again. 

In a couple of weeks we’ll be attending the Universal Gospel Choir, which is a tradition for many folks I know, but which I have yet to make it to.   Two of the most interesting and insightful people I know, Chris Horrocks and Avril Orloff, sing in the choir…   so not only are they amazing people to work with in any sense, but they apparently sing.   Wonderfully.   We are all layers and layers of interests and passions and it takes years to uncover all the bits…   This year thanks to a great friend we have tickets and are going as a small gang of new and old friends.   The thing that will probably happen there is that, given it’s at the Jewish Community Centre, they’ll light the menorah.    Since we were married, our family has done this every year and I’ve come to love the 8 days of Hanukah candles, each evening at dusk, the room getting brighter and brighter and my partner telling stories about the Macabees…    He and our son just got back from Connecticut where they celebrated a second (American) thanksgiving.   Some years, when they don’t go, we host a second Thanksgiving at our house for our American friends and anyone who likes turkey!   (Turkey is the reason I can’t be a vegetarian!)   Our friend Judy, known to many of you, has taught us all to barbecue turkey and it doesn’t matter how cold it is or how snowy many folks from our agency now spend their holidays outside basting and poking around over the barbecue!   Our family’s variation of this is “Jerk Turkey,” sort of  a Caribbean version of the holidays.  

So, there’s a lot more going on at this time of the year, as we traditionally have more time to spend together and more need to rely on each other, than merely shopping.   For many of us shopping is the least of it.   What’s a holiday tradition at your home or in your family?   We’d love to hear from you.  

On another note, check out www.bcacl.org for information on the recent changes to the makeup of the board of CLBC and information on how to make your views about these changes known to government.    We’ve had some amazing meetings with groups of self-advocates and got to hear lots about how people are directing their own lives and resources and making great inroads into taking their place in their communities.    Our own letter expressing our belief that folks with disabilities and their families have the capacity to give valid and thoughtful input into the direction of their services will be sent out today.  

From Susan and Aaron, and from everyone affiliated with our 101 Friends Personal Support Network project, we wish you all good things in the coming year and many, many connections with friends new and old. 

Feel free to forward this to friends or others who might be interested.   You can subscribe to the newsletter on our website www.spectrumsociety.org or see it as a blog at http://101friends.wordpress.com/  Click on any heading to read the full article.  Feel free to forward this to those you think might be interested.   Our other e-publication is also a monthly newsletter that documents the work of our agency, Spectrum Society.   You can find out more about our Personal Support Networks project, including our publications, at our site www.101friends.ca   You can also subscribe to our 101friends newsletter from this site.  If for some reason you’ve decided you don’t want to receive these newsletters, unsubscribe at the bottom of the email you were sent.   To subscribe to our agency’s newsletter, Spectrum Society In The Community, go to our main website and click on subscribe in the top right corner: you will have a choice of subscribing to this newsletter or the agency one.

“We were born to unite with our fellow men, and to join in community with the human race.” Cicero

Facebook and YOU

Facebook has quickly become one of the most popular forms of social networking – staying in touch with people you see all the time, or people you have lost contact with, or playing games…    Our agency, Spectrum Society, recently started a Facebook Fan Page and within a month we had more than 150 fans.   You can visit us here, whether you’re on Facebook or not.   One of our favourite Facebook sites is “StartWithHi” – the CLBC campaign of ads, videos and discussions about folks being included in their communities.    Another is the Asperger’s Awareness Page which features almost nightly conversations by self-advocates and families. 

Recently one of our young friends, an aspiring Chef, practising for an exam that might lead to a scholarship in an integrated Chef’s college, published a photo of something he’d cooked and I watched as 50 people within a couple of hours sent messages of support (and hunger!).    This month’s poll is about Facebook – how do you use it and what do you like (or dislike) about it.   You can vote as many times as you like.

 

“If you have come to help me, you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together.”  Aboriginal activists group, Queensland, 1970s.   Often attributed to Lila Watson, who has said she was not comfortable with something not born out of a collective process – the attribution here is the one she accepts.

 

Workshop news – Edenvale Retreat Self-Advocates Rock!

We had a great time at the 10th Annual Self Advocacy Leadership Institute at Edenvale, making some new friends and enjoying visiting with some old friends and some folks who we have met over our travels during the last couple of years.    One of the things that folks told us there is how much they look forward to coming each year and seeing people they’ve met, learning new skills, sharing information and ideas and growing stronger.   For only $170 per person for the weekend, inclusive, what a great deal!    Way to go, SelfAdvocateNet.com, Gregg, Arlene and Cam and whoever else is involved in putting all of this together!  

Each of our workshops is different, depending on who is there.   In this one we were delighted to have some folks who had attended workshops we had given in other areas, who had gone off and thought about the conversations we like to have with people, and had new ideas to share.   The other thing that is always interesting is how Self-Advocates support and share with each other, in different ways than they do as part of a larger group.    Definately there’s good reasons to support the Edenvale Retreat. 

We have some funding still available through CLBC to do more workshops until about March.   We hope to be in Kamloops in January, and do a couple of days there, but if you’d like to host a workshop for your group, agency or even a gang you put together for the purpose of looking at what you might do diffferently, let us know.   email psn@spectrumsociety.org

At every workshop we do, we try to gather feedback on what people want to focus on and how it could be best presented.   Here’s some feedback from a recent workshop:  “2 full days next time, with maybe a day in between.”  “[liked] Information presented, ideas that have come about.”  “Shared experiences.”  “Balance of presented info and useful groupwork.”  “Useful information and dialogue.”  “Content was relevant…”  “The comfort of interaction, relevant material, global picture.”  “Inspiration, vision, re-energizing.”

“Whether community is seen as a place, a network of caring people, or a community association where people gather around areas of common interest, hospitality is the ingredient that creates true community.    We have learned from New Story approaches and from our own family and friends that community and hospitality are essential ingredients to quality of life.”   John Lord, Pathways to Inclusion: Building a New Story with People and Communities.

urgent – Personal Support Network Facilitators contact info

If you are in British Columbia and working on a project, or if your job has shifted in some way to include the creation, expansion or sustaining of personal support networks we’d appreciate your contact information for possible inclusion in an upcoming listing.   We’d also like to know about community inclusion outside of the disabilities sector.   Please email psn@spectrumsociety.org

“Your entire life journey ultimately consists of the step you are taking at this moment. There is always only this one step, and so you give it your fullest attention.”  Eckhart Tolle 

welcome to the november 101 friends e-newsletter!

Well, we had a great time in Grand Forks with a group that included a self-advocate, some students from Selkirk College, their professor, a city councilman, some dedicated Personal Support Networkers and family members.    We could have easily been convinced to stay another day… or six.    Next month, the Edenvale Retreat, the largest gathering of self-advocates in the province (we’re feeling so honoured to have been included) and Kamloops, where we’ll be meeting with folks from the Community Council, self-advocates and family members.  

One of the things we really like to talk about with groups is the leadership that has grown out of British Columbia and created so many innovations that have spread around the country: PLAN, Vela Microboard Association, Individualised Funding, People First…  when we speak in other places, people have an almost mythic sense of what B.C. has accomplished.   Often they know more than many local folks about what we’re known for.   Many of these movements have been initiated by people who should be celebrated – Al Etmanski, Vickie Cammack, Barb Goode, Linda Perry, Gordon Fletcher, Brian Salisbury, Jule Hopkins, Pat Mirenda, Mildred DeHaan, David and Faye Weatherow…   that’s absolutely not a complete list, but it’s amazing that so many great thinkers and advocates have gathered in our province and been able to make themselves heard and create changes that have affected so many.   There’s a book in it all and, it seems to us importantly, there’s a history to the community living movement.  

Feel free to forward this to friends or others who might be interested.   If for some reason you’ve decided you don’t want to receive these newsletters, unsubscribe at the bottom of the email you were sent.   To subscribe to our agency’s newsletter, Spectrum Society In The Community, go to our main website and click on subscribe in the top right corner: you will have a choice of subscribing to this newsletter or the agency one.  

“I have lost friends, some by death … others by sheer inability to cross the street.”   Virginia Woolf

Reciprocity

One of the people we met in Grand Forks this month was talking about activities in which folks take turns deciding what they’re going to do together, and even if it’s not one’s favourite thing, it’s an opportunity to demonstrate reciprocity just to show up and give something that someone else likes a try when it’s their turn to lead the way.   It was such a simple and elegantly stated thought…  

In an early issue we gave Susan’s banana bread recipe as a way of quite easily making a gift for someone and at least some folks made and the idea of reciprocity was one of the first conversations that came up when we began focusing on this work.  Last month we met a family who wondered what more their daughter could offer – what were the other opportunities she might have to reciprocate.    We were moved and educated by others in the room who also knew her and talked about things they found special – the things about her that they found to be “gifts” – her ready, huge smile, her glorious hair, her very presence…   reasons they wanted to spend time with her and were glad to see her when they did.   She might well be able to take on other roles that were recipricol, and that’s one great conversation, but she is also just fine just the way she is, and that’s another great conversation.   A gift.   As are we all…   and that constant realization is one of the many reasons that some of us do this work.  

In our last issue we polled readers about reciprocity:

Reciprocity is the act of giving back something, to friends, family and community. How do you do that?

I make things for people I care about 14%

I tell people how I feel about them 14%

I do things for people 43%

I like to surprise people who have done things for me! 29%

You can still participate in this poll by clicking here to add your thoughts.

“be patient to all that is unsolved in your heart and try to love the questions themselves like locked rooms and like books written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.”  Ranier Maria Rilke, Letters To A Young Poet

a great idea: a personalised newsletter just for someone you care about

Part of the fun of having a book called “101 ways to make friends” is that people are always trying to come up with the 102nd, 103rd, 104th idea…   it’s really exciting with self-advocates in workshops (we’ve gotten up to 118 !).   But the truth is it’s a world of infinite ideas and our point was just to share some of what we’d learned from folks we’d talked to about relationships because sometimes each and every one of us has a failure of imagination or gets stuck.   It’s been interesting to hear how audiences we hadn’t intended have used our book – immigrants, students away from home for the first time, kids in school, teachers in classrooms.    Each month we hear great ideas that we hadn’t thought of. 

“I want to thank all of the folks responsible for making the 101 Friends Newsletter work.  Three weeks ago I fired off a copy of it to Cheryl’s home (a group home she shares with 4 other folks) and Krysten, the head Co-ordinator there said that the response from everyone was very positive,” writes Edward Fontaine.

Edward is one of our long-time friends whose dedication to this field and all the nuances of authentic, heart-felt supports to folks with disabilities has been evident over a long career; as with many of us in this field, he has a family member with a disability, his sister Cheryl, living in a group home in Ontario.   Edward for some time has lived in British Columbia and was inspired to create his own personalised newsletter for Cheryl: “I enjoyed the 101 Friends newsletter so much, I came to the conclusion that I could make it a point of staying in touch with Cheryl on a much more frequent basis, and do so in fun ways.  The newsletter I made and sent this evening is a first step.”

Edward’s newsletter is in Word format and is a combination of journal, update and travelogue, telling Cheryl and those around her about his life and events around the city that he’s been involved in.   One of the things I like about it (aside from the fact that he’s an excellent writer) is that as well as including lots of photos, there are links embedded in the newsletter so that Cheryl and those who support her can read a story about what he did, see a photo of him there, and then click on a link that leads to more information about various things – Granville Island, the Fraser River, the Writer’s Festival.  

It’s also really clear throughout that the newsletter is for Cheryl – others might share it if she wants to do that, but it’s personalized and designed for interaction, ”…here it is Sis, the first of many newsletters from your brother in Vancouver, British Columbia.  I have intentionally gone with lots of pictures and will keep the writing to a minimum; my hope is to give you snapshots of life out here from the view of my eyes.  Later, if you have particular interests, or something catches your fancy, I will gladly go into greater detail.”   If Cheryl expresses an interest through gesture, her supports will help her ask for more pictures of something.   Edward is now on his second issue and the response has been great, from Cheryl and the folks in her home. 

Great idea, Edward!   thanks for sharing it.

the hope lady: Wendy Edey

Well what a wonderful morning…  it started off as an ordinary “good” morning – not exceptional… a little cold and rainy, a little too much to do, friends off for an ultrasound that i was excited about, a weekend away with the one I love looming on the horizon, a day of too many meetings about too many different things just an hour away…  and then someone sent me a notice about a workshop I really couldn’t get to, unless I cancel my weekend away (not), and I ended up on the blog of “the hope lady” thinking yeah yeah yeah blah blah blah…  someone else who wants to inspire us (part of me was thinking that) and more emails started flying in and my own hope was diminishing quickly…   So I was not feeling really hopeful.   I mean, she’s from edmonton.  I’ve been to edmonton.  and then I started reading and got immersed…  I luxuriated…  I went from month to month at random, laughing, hoping, yearning.   I started thinking maybe I could miss the weekend away… maybe, instead of going out for an amazing dinner in seattle, we could go spend the day at Sunnyhill Children’s Hospital and listen to Wendy Edey?  

This is a great example from her blog, which is full of great stories, and will give you a sense of where she’s coming from:

CALLING ON HOPE

Troubled people call on hope,
Thinking nothing short of magic can help them now.

They say: ”I am the sum of my experience.”
Hope says: ”Yes, that plus your hopes for the future.”

They say: ”What if I don’t have any hopes for the future?”
Hope says: ”Then we’ll find some.”

They say: ”Where will we find them if no hopes are there?”
Hope says: “We’ll find them in your past experience added to the past experience of others, added to the future you haven’t explored yet.”

”Past experience has tied you in knots,” says Hope. ”Hold on to me as we work at the loosening.”
Then they, with surprising frequency, say: ”Okay.”
And before they have time to think about it, they are working the knots, making room for hope to perform the magic.

Visit Wendy Edey’s Hope Lady blog here. 

“From Relief Measures to Reduction Strategies: poverty and people with disabilities.”

We love talking about recipricol relationships with folks with disabilities and how things can and do work around the province, but we’re also very aware it’s one of many necessary conversations.   Perhaps one of the most important is poverty and disability, as one of our good friends reminded me the other day.   Click through for more information about an upcoming workshop hosted by BCACL…

BCACL has organized, “From Relief Measures to Reduction Strategies: poverty and people with disabilities.” 2 days of collaborative exploration to address profound poverty faced by people with intellectual disabilities. november 16 – 17, 8:30 – 5 p.m., Vancouver Public Library, Alice MacKay room, 350 West Georgia, Vancouver. to register: http://www.bcacl.org/documents/Events/2009/Poverty_Forum_Flyer_RegForm.pdf

contact Cindy Chapman for more information cchapman@bcacl.org

NurtureShock by Po Bronson and Ashley Merryman

I’m very excited about this new book about parenting and support strategies, which looks at issues of praise and performance, as well as grounding factors such as getting enough sleep and watching t.v. in relation to more active pursuits. Bronson and Merryman have looked at overwhelming research and meta-studies around contemporary parenting and teaching (based on ideas around self-esteem which came out of research in the 80’s) and want us to revisit what we think we know about how to support those we care about. We are not born knowing how to parent, suppor and teach (“nurture shock” is a term used to describe parents who find, after the birth of a child, that a whole array of skills have not instinctively dropped into their brains). Media reports are simplifying their ideas, unfortunately, as being just about over-praising children but that’s only one part of a whole other holistic picture about better ways to provide specific praise and constructive feedback, and how to re-think teaching strategies. A short video is found here, but it’s really the whole book that’s important. Bronson talks very honestly about a parent’s role as a “praise-junkie” and how difficult it’s been for him to change his ways, and how many of us are invested in attributing “good performance” to our kids and those we support to address our own self-esteem issues. A fascinating read (or listen, I’ve got it as an audio-book).

The NurtureShock website can be found here.

welcome to the October 101 ways to make friends newsletter!

Adrian and Aaron: Adrian was a great host in Prince George and also the winner of our "101 Ways to Make Friends" book at the Vela Microboards Association Conference of the North. Notice that I am proudly wearing my http://www.startwithhi.ca button

 

 

 

Susan and I have been on the road again, and having a great time.   In September we travelled to the Vela Assocation Microboard Conference of the North in Prince George and talked with families, friends and self-advocates about provincial strategies, and also gathered stories in a “story room” later in the day.   We took our E.D., Ernie Baatz, with us for the first time and it was a lot of fun to have him there.   Later in the month we went and spent a day with folks in Kelowna that was a great learning experience for us – they were two wonderful groups!   We’re amazed and humbled by all that’s happening across our province.   In October we’re off to Grand Forks and Richmond, and we’re currently organizing a trip up north to Smithers (maybe in the spring?).   It’s really exciting and such a great opportunity to meet people from all over the province and hear what’s going on in different places.   

Our story room idea came out of work we did with David Pitonyak and has been a powerful thing for us.   Really, we had no idea how seldom folks with disabilities (and their parents and friends) get to tell their stories to someone who will listen.   I was furiously taking notes and came away with 18 great ideas to share!   One of them is in this newsletter…

Hope that October is a great month for you all!

“The essence of our effort to see that every child has a chance must be to assure each an equal opportunity, not to become equal, but to become different – to realize whatever unique potential of body, mind and spirit he or she possesses.”  John Fischer

Michael Kendrick in Vernon: “Optimal Individual Service Design.”

As we’ve traveled around the province talking to leaders of various initiatives, one of the names that keeps coming up is that of Michael Kendrick – his influence (and the willingness of folks in our province to consider his ideas) are part of what’s making BC a leader in person centered supports.  

NOCLS and Kindale are hosting Michael Kendrick’s intensive “Optimal Individual Service Design” in Vernon, October 26 -30 and November 23 – 27, 2009.   They have made arrangements for a reduced rate at local hotel.   There are a maxium of 30 participants working closely and, as of our last contact, there were a few spaces left.    We’re wishing we could go but had booked our own workshops during those days!   The cost is approximately 1350.00 per person (plus hotel and other expenses).    “I highly recommend to the course as it is amazing.  …You learn, you practice and leave with an unbelievable tool to assist you in the future,” says co-host Garry Molitwenik.  

From the course outline:

This course has been developed due to the ongoing difficulty faced by many consumers, families, advocates, staff, funders, and organizations to be able to develop services that are authentically effective in meeting people’s needs, and that can be implemented in relation to conventional organizational conditions. It is commonly the case that people often want this result, but are stymied when it comes to evolving service models and strategies that are both in accord with the person’s needs and viable in the usual bureaucratic environments of services. Of particular interest in the course is the problem of innovation as it relates to the construct of unique individual service models or support arrangements “from scratch” that may lack local, or even national precedents, to serve as a guide.

The course relies heavily on a framework of analysis first pioneered by Dr Wolf Wolfensberger, of Syracuse University called “model coherency analysis”. This will be combined with many derivatives of this initial work as it relates to quality of service. The event will examine many contemporary subjects pertinent to optimal service including but not restricted to:  

• The nature of quality
• The role of assumptions in determining needs
• Establishing fundamentality in needs
• Meeting needs normatively
• Defining “person-centredness”
• Appropriate and supported use of generic and natural supports
• The role of personal vulnerabilities and intentional safeguards
• Understanding how empowerment can be put into operation
• Clarifying pertinent theories and how they are embodied in models
• Understanding how service design can done jointly “with” consumers, families and cultural groups rather than done “to” or “at” them
• Costing, structural and management strategies and judgement
• Serving “difficult to serve” persons
• Building in the capacity to modify service practice on an ongoing basis
• Exploring the ethics of “right relationship”
• Searching for answers in people’s lives on an ongoing basis rather than having them “once and for all”

The significant limitations that exist today in both systems and practitioners being able ensure that a given individual will actually receive a highly relevant individual support arrangements that suits their needs and lifestyle has made it necessary to familiarize interested persons in how this can be done optimally, even in today’s systems. Consequently, this event has been developed to give practitioners who are well disposed to individualized solutions i.e. “person centred options”, the opportunity to go through the actual stages of thinking, judgement and decision-making that are involved in creating meaningful person centred results.

To enquire about spaces: Garry Molitwenik garry.molitwenik@nocls.com

If you are interested in attending but can’t go to Vernon or they’ve run out of spaces, let us know – we hope to co-host Michael here in Vancouver in the next couple of years.

“Moving from Activity to Connection: stop cooking and start looking” By David and Faye Wetherow

 Thanks to the Wetherows for permission to republish this excellent article about the technology of connection.   More information about them and their leadership in many areas of person-centered supports can be found on their website, here.    Our province, our communities and our field have been hugely enriched by their work as thinkers, dreamers and facilitators.     Thanks to Chad for getting permission to republish this. 

Moving from Activity to Connection: stop cooking and start looking

by David and Faye Wetherow

John O’Brien points out that the ‘driving questions’ that underlie our work have a great impact on the direction, shape, and outcome of that work.   

We were reminded of this last year when we visited an ‘adult day program’ that had been developed on the basis of the question “What can we do to replace school for young adults with disabilities who have ‘aged out’ of school?”  Beginning with that question, the founders created something that had the shape of a school – a program based in a building, people with disabilities ‘attending’ with ‘peers’ (other students with disabilities), language that focused on skill development, and so on.

For many years, the driving question, “How can we create an opportunity for people who are not working to fill their time and be productive?” almost always generated something that had the shape of a factory – the sheltered workshop.  That pattern changed when some of the driving questions changed, and we saw the emergence of supported employment, micro-enterprise projects, etc.

The driving question, “What can we do to provide activity for people who have nothing to do during the day?” or even, “How can we make it possible for each person do what they enjoy during the day?” has tended to generate something in the shape of a perpetual series of supported ‘activities’, excursions, or even entertainments – ‘van therapy’, ‘mall therapy’, etc.

Most ‘developmental day programs’ seem to be constructed on the basis of the first two questions.   People arrive at a facility where they engage in a series of supported learning, recreational, occupational, therapeutic, or (we shudder) ‘maintenance’ activities.

More recently, we’ve seen the development of a number of ‘community-based activity programs’ that seem to be based on the third question.  Staff may accompany someone (or a group of someones) to a local swimming pool, or go on a hike, or even spend an evening at a local pub.  But the focus seems to remain on the activity per se, rather than on strategic thinking about how the activity might offer a path towards deepening connections.  

Individual activities often involve some positive elements – pleasant events, positive interactions, maybe even some skill development.  But unless they are strategically focused on deepening connections, activities alone are unlikely to lead towards meaningful relationships and community contributions.

John O’Brien reminds us that as soon as we change the driving questions, we open doors to new possibilities. Here’s are a couple of examples:

Some colleagues who work in a rural community have always helped the people they support to attend an annual community dinner and barn dance – a delightful event, especially if you like barbeque.  Visiting with staff, we began to explore the possibility that a couple of the people they support might become involved with the group that sponsors and organizes the dinner and dance.  There’s always a lot of work involved and all kinds of contributions are welcome.  

Instead of one great evening, there could be an opportunity for a few people to be involved for months prior to the event, which opens up the possibility of developing relationships with local citizens who represent many different kinds of connections – local farmers, family members, church members, people involved in civic life.

A while back, we visited a facility-based day program (school-without-end) where one of the activities was cooking.  ‘Cooking-as-an-activity’ involved staff assisting people to make muffins and other desserts in the facility’s kitchen.   The benefits?  An enjoyable hour or two.  A tasty product that could be shared with friends and family.  Some learning outcomes in terms of reading and following recipes, ‘functional’ cooking skills, etc.

But as the support staff began to explore alternative questions, they started thinking about ‘cooking-with-a-focus-on-connection’. 

The first thing they realized was that they needed to stop cooking and start looking.  Being a good detective became an interesting new element in their job descriptions.  They began to envision helping Sara, who loves to cook, connect with a local gourmet group that gathers in members’ homes to enjoy ethnic dinners and share food, music, and conversation.  If such a group didn’t already exist, they could work on finding people who might be interested in starting such a group.

The benefits?  ‘Cooking-as-connection’ contains all of the positive elements involved in ‘cooking-as-activity’. But it also creates opportunities for Sara to meet on a regular basis with people who share the same passion and contribute to a socially significant effort.  She might even come to be recognized as one of the organizers of a delightful social event.

As our conversation developed, we helped Sara, a couple of the program staff, Sara’s mother, and the pastor from her church create a new personal plan.  Sara had been in the program for some time, and planning usually took the form of asking ‘what activity should we add to the calendar’ – focusing on interest and skill development, but without particularly focusing on connections.  

Now, several new opportunities presented themselves, including the idea of ‘cooking-as-connection’, ‘gardening-as-connection’, and the idea of creating a community folk dance group.  The pastor came up with the dance group idea as soon as he heard that Sara loved to dance.  He had a real personal interest – he missed the folk dancing that was part of his life before he came to British Columbia.  He absolutely understood what we were working on, and made a commitment to support several connections for Sara, including an involvement with a group of women who cook for all the church events.

On a personal note, two years ago, when we hired a tutor / assistant for Amber, we said, “Let go of the curriculum.  What we want you to do is to pay a lot of attention to the things that interest Amber, and follow those threads of interest in the direction of companionship, communication, connection, and contribution.

“Here’s an example of what we mean.  Right now, Amber is interested in figuring out how to deal with garden slugs without having to kill them.  How much she knows, or learns, about garden slugs is far less important than working on the connections.   Who else cares passionately about that question?  What groups in our community are interested in the question of earth-friendly gardening?  Where could she make a meaningful contribution?  Where would her interest in that topic be welcomed and celebrated?”

One of the directions this question is leading is towards a neighbourhood learning exchange, and Amber is beginning to get involved with a group that focuses on some watershed issues that effect our whole community.  

We’ll keep you posted.

David and Faye Wetherow

“A great community systematically identifies and mobilizes the gifts of each of its members.”

– John McKnight

 © 2003 David and Faye Wetherow ! CommunityWorks

Spectrum partners with www.tyze.com

Whether you call them personal support networks, circles of friends, family, or family of choice – the people around you are important in good times and bad!   Having a network around you can keep you healthier and, if you do get sick, help you stay safe in the hospital and get better faster.    One new way to facilitate the development, expansion and inclusion of a network of friends and family members is with a tyze site.     Some of the best agencies in B.C. (and in other countries) are experimenting with this variation on a social networking site, which has as it’s focus the support of one’s personal network.   Our agency recently made the leap and is now partnering with tyze:

With a Spectrum.Tyze personal support network you can

• … invite friends, family members, neighbours and caregivers to join your support network
• … schedule everything from medical appointments to birthday parties
• … plan tasks together and share progress
• … tell stories about how you met the person at the centre of your network, and share their triumphs and challenges.

We’ll keep you informed as things move forward.    We have an initial contract to support the development of about 20 spectrum/tyze sites for individuals and will be conducting our first training session at the beginning of October.  

check out the Spectrum launch page here.      You can find out more about tyze and see an example of how a site works at www.tyze.com

a new poll: reciprocity

in our poll over the last couple of months, our readers shared information about how they met most of their friends:

67% met most of their friends at work or school ; none met friends through a social networking site (like Facebook); 13% met them through mutual friends; for 7% most of their friends are family members; 13% met them through an activity we both enjoy (a hobby or interest group) ; none met them at a dance or other event.   Our new poll is about reciprocity.  

Community Living Month is Here!

There’s lots going on all over the province this month – and many great opportunities to meet new people and make friends.    This year’s focus is on inclusive education:

October is a time to celebrate the gifts that people with developmental disabilities bring to our vibrant and diverse communities. These communities start at school where all students learn to live alongside peers. They learn together; they play together; they grow and are nurtured together. As a result of the past 20 years of inclusive education practices in BC, people with developmental disabilities have better access to real work for real pay, post secondary education, economic security and better overall health and well-being.

Check out the bcacl website for lots of great information and this page about events in your communities.   You can also check out the www.startwithi.ca pages for their listings.   If you’re in the Vancouver area, come and drop by our offices for our open house on Oct 20th

Jean’s idea… be a volunteer at Church

Want to make your own church signs with your own messages? check out http://www.says-it.com and have some fun with church signs, soda cans and delivery trucks!

Jean is a wonderful woman with a son named Stewart, who we met in Prince George.    She talked to us about one of the ideas that’s worked for them to expand Stewart’s network around the community.   Each Sunday they go to church and at the end of the service they stand at the back and hand out pamphlets to people as they are leaving.   She says that many folks in the congregation look forward to stopping to talk to Stewart as they leave and that he’s connected with about half the residents of Prince George – including Doctors, Lawyers and other professionals who have come to really care about him and his well-being.   Jean has been a parent of various kinds for most of her 70+ years and was a wonderful and funny person to spend some time with.

Welcome to Spectrum’s Personal Supports Network Project Newsletter for September!

August was a busy, fun month – for one thing Susan and I were, oddly, on opposite coasts.    She was in PEI with her family and I was on the Olympic Peninsula with mine.   And our project hosted David Pitonyak for three days of workshops and invited in, altogether, about 200 different folks from all over the province.   Thursday was our first “cost-recovery” workshop that we’ve hosted on our own (we’ve partnered with “Imagine” before for workshops) and we learned a lot.   Thanks to Judy in particular, but also to many other folks who took on different roles throughout the three days.  

I’ve been a fan of David’s for a long time, so I have wondered what it would be like to actually spend days with him, have dinners, introduce him to people I love…  you know how every once in a while a dream comes true and you think “wow, that was worth dreaming!”    At the end of three days with David, things felt very simple, strong, elegant, doable, worth doing, full of opportunities for growth, potent and ready for transformation.   There wasn’t a single person I talked to who didn’t feel moved and changed by their time with David.  

And I was having to drink powerade because I’d been laughing and crying so much that I was starting to feel dehydrated.   We’re hoping to host the return of David to Vancouver next year for even more days, so keep in touch… 

With September, we’re starting to book workshops again and have already lined up almost ten places to visit: we’ll be in Grand Forks, Kelowna and Prince George to start with, over the next month or so.   If you’re in one of those places and want to connect, email us at psn@spectrumsociety.org  - we love to meet people if we can, and hear about what’s going on in your area. 

Last but not least, we have a new order page for those wanting to purchase books.

If you want to subscribe to this newsletter, please go here

David Pitonyak, telling a story

and enter your information.   A newsletter will be emailed to you each month!  

Last but not least, if you’ve got an idea or a story you want to share, email us at psn@spectrumsociety.org and we’ll do our best to help you get the word out.

Three Days with David Pitonyak – Chad Clippendale

Shelley Nessman, Ernie Baatz, David Pitonyak, Susan Kurliak, Jule Hopkins and Laura Appleton-Jones

I recently had the good fortune of being able to attend three days of workshops with David Pitonyak, a consultant fron Blacksburg Virginia who travels around the world speaking about working with folks with developmental disabilities.

On August 19th David presented his workshop “Toolbox for Change: Reclaiming Purpose, Joy and Commitment in the Helping Profession” to Spectrum Society’s leadership team and on August 20th he presented his workshop “The Importance of Belonging” to parents, self-advocates, and support workers.  On August 21st he facilitated an initial meeting of a provincial group of “Network Facilitators: Agents for Change” workshop.

“Toolbox for Change” consisted of strategies that organizations can use to improve their services to indivduals with a developmental disability. The strategies focused on the importance of relationships for the individual who is being supported and for those in a support capacity, how to remove fear from the workplace, how to make joy a goal in the work we do, how to develop a vision, get organized and stay organized, how to listen, learn, help and lead, and how to tell stories.

“The Importance of Belonging” focused on the importance of relationships in the lives of both individuals with a disability and those who work in a support capacity, person centred planning and inclusion, how to develop and strengthen relationships, the impact of the system on relationships, helping folks connect with people who love the same things they do, and helping folks make a contribution to the broader community.

“Network Facilitators: Agents of Change” was a chance for people from around the province to connect and tell stories about the work they are doing to help individuals develop and maintain personal support networks. The hope is that these individuals will come together to meet and share stories of best practice on a consistent basis. What was so remarkable about David Pitonyak was his ability to tell a story. At times he had everyone laughing, and at times he had everyone crying. He was telling stories that were deeply touching, stories that drove home the highs of belonging, and the lows of loneliness and isolation. It was information that we often talk about and notice, but in the form of stories, each one had the purpose of driving home an important point, not only about the lives of those who we support, but about our own lives as well: “loneliness is the only real disability” and that we as support workers must have our needs of belonging met before we can help others to truly belong. The way he crafted those stories, with emotion and vulnerability, drew all of us in, and left us inspired and refocused on what is truly important.

Jules’ Site of the Month – Telling Stories

Here is a nice clip I ran into about telling stories.