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­­­­­­­­­­­­­­­­­­­­­­­­­­­­Who are we anyway? Where are we? What do we do?

July 25, 2009

In Victoria Susan and I had a great time with a full room of self-advocates - the remarkable thing was how many of them were helping out with aged relatives or volunteering in seniors centres - they were providing the networks for others!

In Victoria Susan and I had a great time with a full room of self-advocates - the remarkable thing was how many of them were helping out with aged relatives or volunteering in seniors centres - they were providing the networks for others!

Greetings!   I am taking over for Susan and Ernie for a few hours, they, and Jules, will be back later and then I’ll be back on at midnight until 3 a.m..     I will be logged on to Facebook if  you want to chat with me (but we’re finding this a bit of a pace!). 



Welcome to the “101 Friends” blog/newsletter, a project of Spectrum’s Personal Support Networks project.    I thought I’d talk a bit about what we’re doing here.    Any money raised during this blogathon goes directly to support some of the folks with disabilities who require extra help around accessing their communities.    Since starting up our blog in February 2009 we’ve had a few more than 2500 visits; our busiest day was April 1st (131 visits) and today’s busiest story so far is Shirlane’s “Do You Want To Make Pancakes.”   As of right now we’ve had 117 visits today! 

Spectrum Society for Community Living supports about 220+ people living in their neighbourhoods around Vancouver.  We mostly focus on the city, but also support folks in outlying areas and up the coast, in Sechelt.    We are not a traditional service agency in that all of our work is person-centred and individualised, so we don’t have any larger centre based programs and we don’t support people in group homes.   They live in their own apartments, duplexes or co-ops, or with families of various kinds who support them, and we help them to be included in those neighbourhoods by helping them find work and recreation opportunities and to become included in their communities.  

Spectrum was started by a group of young people and family members as an alternative  to larger service agencies.   The young people had worked for larger agencies and wanted to create a place with more possibilities for folks with disabilities.   The families had been served by larger agencies and wanted something smaller, where they would be listened to.    So, for about the same costs or even a little less, we’vefocused on folks who needed something different – a more creative approach –  folks who had a history of behavioural, communication or health challenges that had not been well met, or came from families that felt disenfranchised.   We’ve been hugely successful in supporting these folks and families and we attribute this to having good natural listening skills, which we’ve tried to build on over the years, with the aspiration of  becoming GREAT listeners.   We also havea great, supportive network of other agencies, professionals and family members so we’ve always had lots of help (which we’re pretty good about asking for).   Often the help came from un-traditional sources, like Mrs G, who Ernie began our blogathon by writing about.   

This tradition of support from un-traditional places has led to what is now our greatest strength – wonderful teams of really creative staff: musicians, actors, artists, writers, producers, designers, directors…    you would not believethe depth of the conversations that are possible in our team meetings.    We work hard to be as flexible as possible so that people can finish movies, take on a play for a few months, focus on an exhibition, get to an audition.   In return, these folks bring those creative approaches, that sense of a world of possibility and those networking skills to the people we support.    

Supporting folks with disabilities to have quality relationships has always been a focus for us and a few years ago because of a certain alignment of factors, we took on a project for our government funders that had to do with looking at how folks made and kept friends, and whether, over a six month period, we could help people meet and deepen new friends.    There were initially 8 people involved, and that grew to 11, over a six month period.   Half of the folks involved had no discernable network: no involved family, no friends.    Some of them came from institutions and had labels designating them as challenging or extremely challenging; some had dual diagnoses (mental health diagnosis in combination with a developmental delay).    Ours was one of four projects around the province and it was great to see what people with different resources, in different kinds of communities, did with these ideas. 

While our project had many successes, what we started to notice was that there were great things happening for many folks with disabilities and their families – and these stories weren’t being told.   People focused on the negative, on the disastrous even, instead of making time to tell the success stories.   What we found was that while some folks with disabilities really need some support around developing relationships, a whole segment can actually be leaders in an area that concerns many different groups.   All over the world people are talking about the need for connection for seniors, teens, immigrants, people in rural areas, people in urban areas (Chicago has a great project about how neighbourhoods can reconnect and people can take their place as “neighbours” again).   So, in fact, there’s this resource in our backyards: folks with disabilities and their families, who have been focused for some 50 years in our province on closing institutions and “community living” – developing strategies to support people with challenges to connect and engage, based on their strengths.     

Out of the work of the four provincial projects and our interactions with CLBC’s Jule Hopkins and Shelley Nessman in particular, Susan Stanfield and I developed a curriculum for a day long workshop which we’ve been traveling the province and facilitating with groups of self-advocates, families, staff teams and professionals.    If you’re looking at this from a different country, you should know that British Columbia is huge:  four times the size of Great Britain and, “…extravagantly scenic and quietly sophisticated. The diversity of landscapes is astounding: You’ll travel from cactus-studded desert to soaring mountaintops and on to wilderness ocean beaches. You can visit traditional Native Canadian villages, thread through market stalls in the largest Chinese community outside of Asia, and cheer on cowboys at an old-fashioned rodeo.”

So, often for the first time, we’ve been traveling the province asking people about the relationships and offering some of the tools and ideas that other folks have found useful in their own lives.   It’s been an amazing opportunity for us.  We’ve been to about 15 places so far and have another dozen or so to go to in the next year. 

Out of those stories came a list of “tips” that people and families gave us, things that had worked for them, and we started making a list.   That list turned into a book which has sold several hundred copies, 101 Ways To Make Friends: Ideas and Conversation Starters for Folks with Disabilities and Their Supporters.   We’re thrilled about how many conversations this work has started (you can buy the book at Amazon or direct from us on our Book Order page.). 

We’re working on other projects now, focusing on community based research and providing training and facilitation, and supporting local leadership.   Our province has incredible resources to offer and we only become more aware of these.   At TASH 2008 in Nashville our presentation was one of the most popular events, with standing room only and people in the hallways, and for three days folks there followed us around asking about best practises in our province – often knowing more about what’s going on here than many local professionals!

My personal favourite story – that I think encapsulates the intentions of our work is “Shirlane’s Birthday Surprise: Great Friends Make for Great Celebrations.”  (   Shirlane’s stories and her work as an artist, are part of what keep us strong and motivated.   Interestingly, Shirlane was not part of our project!    Rather, she’s a great teacher (who yells at me if I don’t quite get it, which is not really a bad thing).  

“Friendship is the only cement that will ever hold the world together.”   Woodrow Wilson

One Comment leave one →
  1. grosenberg permalink
    July 25, 2009 7:04 pm

    You guys are awesome!!!! Off to an amazing start with the blogathon . Fantastic Story Susan , Ernie your stories were all great (particularly Shirlane’s) . Aaron, what you and Susan (along with the help and support of others) have done with this project has been a year long inspiration to many including myself. It’s nice to read the history of the project.

    Shirlane just yells at you. She threatens to run me over with her wheelchair–sometimes more than threatens 😉 — but always just hard enough to make sure I get the point =)

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