Connected is an articulate book of very contemporary research collected together to demonstrate how different communities work and interact together.  Take this idea, for example:

An extra $5,000 in 1984 dollars (which corresponds to about $10,000 in 2009 dollars) was associated with only a 2 percent chance of a person being happy.   So, having happy friends and relatives appears to be a more effective predictor of happiness than earning more money.   And the amazing thing is that even people who are three degrees removed from you, whom you may have never met, can have a stronger impact on your personal happiness than a wad of hundreds in your pocket.   Being in a particular spot in a social network, exposed to people with particular feelings, has important implications in your life.  (p. 51)

These ideas come out of pretty complicated mathematical formulas (“a person is about 15 percent more likely to be happy if a directly connected person . . . is happy . . . [and] at two degrees of separation (the friend of a friend) is 10% . . .  at three degrees of separation (the friend of a friend of a friend), it is about 6 percent” (51).   From politics, to health, to creativity and safety – social networks matter, and the two authors have brought together lots of proofs from sources as wide ranging as crime stories to studies of social behaviours in video games, such as the story of the dragon Hakkar in a World of Warcraft game, who spread an infection which other players with avatars who had healing powers rushed to try to deal with.   In the process many of the altruists gave up their “virtual” lives for strangers, closely resembling behaviours that occur in real life.

One of the questions the authors are asking is what happens when social interactions, built “solely on face-to-face communication” over thousands of years, are taken into new realms.   Their answer is interesting:

new technologies . . . just realize our ancient propensity to connect to other humans, albeit with electrons flowing through cyberspace rather than conversation drifting through air.   While the social networks formed online may be abstract, large, complex, and supermodern, they also reflect universal and fundamental human tendencies that emerged in our prehistoric past when we told stories to one another around campfires in the African savanna.   Even astonishing advances in communication technology like the printing press, the telephone, and the Internet do not take us away from this past; they draw us closer to it.  (257)

This is a fascinating book for those who are interested in the power of networks and communities, online community building, or how messages travel through networks.   It is well researched, with great resources and lots of really good stories and examples.  It’s not the kind of book that I can sit down and read from cover to cover for pleasure, but it is a pleasure to “dip” into it (have a pencil handy to note your favourite pages because there will be lots of them).   The new reading guide is very helpful.

You can read more about the authors and their work here, which includes a link to the TED talk abut this work.

So I’ve followed Lee Anne’s work and since the burgeoning of the internet which, as usual, she’s right on top of, that’s pretty easy given that she sends out blog postings and tweets and an e-newsletter and keeps a site FULL of great resources for facilitators and people who just want to rethink things.   We get all this for free – all you need to do is sign up and it comes sluicing into your inbox.   This constant hopefulness and generosity impresses me.   The favourite thing that anyone has said about my work was that Susan and I made it not be a case of a glass being half full or half empty, but rather “let’s fill that damned glass!”   I think in our field  of supporting people with disabilities we squander hopefulness for various reasons – fear we’ll be wrong, taking on so much we don’t have time to give each other positive feedback, feeling at the mercy of systems that we know aren’t working for those we care about.   Parents need more hope, staff need more hope, communities need more hope.   I’m not sure about people with disabilities…   they seem to have hope to share.

When Lee Anne went off to Africa to do more good works I assumed she wouldn’t be keeping up with her blog and postings, but i was wrong.  Amazing.  I started thinking about how we might want to pay attention to those who inspire us, we might want to try to inspire them, to let them know we’re listening.   We might give them a gift of responsiveness.   I decided to get viral and I sent out this email about my “inspire the inspiring campaign” to people I care about, asking them to check out Lee Anne’s post, “It’s IS (not) my job & other reasons (not) TO change (or learn)”:

hi all – i really like Lee Anne Ragan’s blog and her work. great ideas, great graphics, great delivery and this overall sense of hope and purpose which is not limited to how anything we currently know works but a more visionary sense of a world working together in really harmonious ways. Anne Marie and I went to a workshop she did long ago and I’ve never forgotten how much fun and how inspiring it was. So I look forward to her blog posts and when this one came I thought it was as usual great and assumed that a lot of other people would have great ideas for why change/learning is a good thing for them, and moved on. Lee Ann is working away in Africa right now doing good works, but still taking time to send this out to the world – surely the world will respond?  . . .  It makes me think of a recent conversation some of us were part of about community: how do we engage community? I think we are the community: let’s engage. So now I wonder if we can create some momentum and get this list even beyond the 50 good reasons to change and learn and grow that she aspires to. So if you have a moment, go to the blog, read the list, add to it, and maybe even pass this on to people who inspire you, or people you like to be with as you learn and grow. My big reason to embrace change and learning is that it allows me to keep growing my own network of people that interest and inspire me. Lately I wonder if it’s about “learning” or if it’s really about being part of a “tribe” in right relationship, moving in the same direction. Which you all are part of. What’s your reason to learn/change/grow? Let’s see if we can even inspire Lee Ann the inspirer

And I tweeted and Facebooked and instant-messaged people.   It was a great experiment.   And now the list has gone, as of right now, from 30 to about 70 really great reasons to change.   (As of this moment when I’m about to hit the “publish” button there are 44 responses, each of which Lee Anne has responded to and she seems to be enjoying it!  Some people have half a dozen ideas so I think we’re well over 100 now!)   People are being thoughtful and inspired (and inspiring).   Some of them I know – and I know how busy they are and it’s so great they took a moment to respond, and some of them are friends of friends who got the forwarded email, and some of them are strangers that got attracted to the idea that there’s a party happening over here where everyone is talking about loving change/learning/growth.  And there are people from all over the world, from big cities and very rural areas.   So, if you haven’t already, you can go there now and add your own reasons for why you love change/growth/learning.   Because if you didn’t love those things you wouldn’t have read this far

Feel free to forward this to people who inspire you or who you’d like to invite to the party.   We’re kind of gate-crashers but we’re the best kind and really welcome!

]]> http://101friends.wordpress.com/2012/01/27/inspire-the-inspiring-lee-annes-in-africa/feed/ 0 spectrum reasons-not-to-change From Doug Ragans FB page http://101friends.wordpress.com/2012/01/27/interview-roberta-bower-from-santiago-chile-fundacion-crescendo/ http://101friends.wordpress.com/2012/01/27/interview-roberta-bower-from-santiago-chile-fundacion-crescendo/#comments Fri, 27 Jan 2012 00:04:36 +0000 Aaron http://101friends.wordpress.com/?p=2323 ]]> Click to view slideshow.We were so excited to connect with Roberta Bower, an ex-employee of Spectrum who came to us as a student from a Community Support Worker program and quickly proved herself an insightful and dedicated support person, as well as a great friend to many.  We hope to continue our connection with Fundación Crescendo and have sent them some books and other materials.  We are trying to organize a Skype call with self advocates, a Spanish interpreter and some folks from there.  We’ve already connected with a Spanish self advocate and her support person who want to help!   If you have disability related materials in Spanish plain language, we’ll be happy to send them on to Roberta.   Here’s the interview:

Where are you and what do you do there?

I live in Santiago, Chile where I am a full time volunteer with Fundación Crescendo.  We are a non-profit agency that supports adults with intellectual disabilities.  Crescendo was started by an American missionary who came here 14 years ago.  In 2008, it became a registered Chilean non-profit.  This was a great step towards it being “by and for” the Chilean people.  Right now we have two programs:  a day program that operates our Centre for Psychosocial Support, and one group home.   I work in both places.  At the group home, I meet with the staff regularly to hear about what the folks are doing and what challenges come up.  We are working together to move away from the staff doing everything for the people who live there, to supporting the folks in managing their own home.  I also work with the people who live at our group home to learn about what it means to live in together, what is good about it,  and how that can be better. 

Folks from the house who want to, come to church with me on Sundays.  When they first started coming with me, the people at the church were nervous and didn’t know what they were supposed to do.  Before much time passed, they realized they didn’t need to “do” anything, just be themselves.  If I ever go by myself, I am asked, “Hey, where are the others?”  One of the women from the house was invited by some people she met there to their house.  It was probably the first time she had been invited to someone’s home that wasn’t family or paid to be with her. 

At the Centre, I work with the Occupational Therapists who manage the programs.  They are very interested in the way people with intellectual disabilities are supported in Canada and the US.  Together we are working toward more community involvement and moving away from a “workshop” model to community integration.  Our first participant has been offered a job in the community – a real job, with real pay and responsibilities!  Carlos will start when summer holidays are over at the end of February. 

How many folks are supported by your organization?

We are supporting 17 people and their families.  We have 7 people who live in our group home.  They and 10 others come to our Centre each weekday. 

What kinds of challenges are you facing?

People who have disabilities are not as visible in the community here as they are in Canada.  For example, I had been here for over a year before I saw a person who had a disability on the bus.  Solange, our Executive Director, told me about a person in her neighbourhood who had an intellectual disability and never left the house.  The family was ashamed; they thought they had done something wrong and were being punished.  They had the windows in the house changed so they were up very high and no one could see in the house.  One day there was a fire and the son couldn’t get out.  He died in the fire.

Some of the people I have met here who do not have disabilities had never been introduced to anyone who does.  It is a whole new experience for them to learn that people who have disabilities are interesting and have abilities.  One time a friend of mine told me about being on an elevator with a woman who had Down syndrome.  She said before she met me, she wouldn’t have known what to do.  She would have thought she needed to treat this woman differently because she had a disability.  Since she met me she said, she realized she could just talk to her like she would anyone else.  She said the woman was very friendly and interesting to talk to.  I am glad I have been given the opportunity to help people see beyond stereotypes and the fears that come from them.

Families and individuals who have intellectual disabilities receive no support from the government or anywhere else after that person reaches age 26.  Before that age there are segregated schools for people who learn differently.  The government has stated that children who have disabilities are to be integrated into regular classrooms but it is yet to happen.  There are very few residential alternatives to institutions.  Some families have no choice but to send their family members to places that none of us would want to live in.

We are optimistic though.  Last year, several agencies that support adults with intellectual disabilities and their families were interviewed by the government for some pilot project funding.  Out of all those interviewed, they chose Crescendo for pilot projects in three areas:  support to families, residential programs, and day programs.  Crescendo was the smallest agency and the one with the least technological resources.  They said we were chosen because of our attitude of respect and giving dignity to the people who are supported by Crescendo.  They want us to create programs to support the families, provide more residential service options, and increase the services provided at our Centre.  We will be busy!  One of the pilot projects we will be funded for is a Shared Living project.  In Spanish it is called Vida Compartida.  Soon I will have two room mates, people who now live in our group home.  We are excited about these opportunities to provide support to families and our participants, and demonstrate to the community at large how much we need to have individuals who have disabilities as part of the regular rhythm of life.

What do you think the main differences are between the kind of work you did here with folks with disabilities and what you are finding there?

People are the same everywhere you go.  We all have the same needs and wants.   There are however cultural differences that must be taken into account and respected when we are looking at developing services.  When I was training to be a volunteer missionary, I studied a model of service delivery called ABCD – Asset Based Community Development.  This is what the community living and self advocacy movements have been saying for years.  Look at what the community you want to serve has to offer and base your “help” on their abilities or assets.   Don’t try to cram your ideas based on another culture into this one.  For example, families are very close here.  People do not place the kind of value on “independence” we do in North America.  That is great, because it will help all people, not just people who have intellectual disabilities, move to interdependence which is better than independence.  We all need each other. 

People here would like to be helpful – how could we help?

We would love to see people who have intellectual disabilities working together to become self advocates.  They have so much to offer but have not yet found their voice.  We are looking for self advocates who speak Spanish and would be interested in sharing their experiences to help our friends here start their own self advocacy groups. 

What’s a last thought you’d like to share?

Living and working in Chile, I have experienced what it is like to not understand the world around me.  When I moved here, I spoke no Spanish; I didn’t understand the culture and felt overwhelmed.  It was so much work just trying to understand!  I was tired all the time.  My friends here who have intellectual disabilities became my mentors, my teachers, my support.  It has given me some insight into what it is like to be different and have challenges understanding the world around me.

One project has assembled a focus group of adults with disabilities to create an alphabet book for children learning to read, with photos of models with disabilities participating in their communities for each letter. Dr. Susan Powell will be working with adults to “imagine,” write, plan and be models for the book in community settings they use, and the book will be sold to libraries, schools, groups and individuals so that images of people with disabilities participating in valued roles will be available to those communities. Participants will be paid for their participation.

Another exciting addition to our catalogue will be Susan Stanfield’s new book, Community Support Worker Essentials: supporting people with developmental disabilities in their pursuit of the good life. Susan had been looking for resources to use in staff training - current, Canadian content; practical information for staff supporting people in community settings – and discovered there isn’t a whole lot out there.  So she decided to write something herself. There is an excerpt available on this blog. Scroll down and check it out!

And last but not least, we are planning to publish an anthology of current thinking about how people with disabilities can be supported. The essays in this anthology From Institutions to Individuals: On Becoming Person-Centred, will be directed to college  students in Community Support Worker or Disability Studies programs and new or experienced community support workers.

If you haven’t already, please follow us on Twitter – @101friendsbc and like us on Facebook – Spectrum Press: books and media by, for and about people you care about.

By the way, we are currently running a special on-line offer. The next 5 people to buy anything from our on-line store – www.spectrumpress.ca – will receive a free first edition copy of 101 Ways to Make Friends. So don’t delay. Buy now!

Jim Reynolds

Hello friends.   We are hosting an all day social media event at which several things are happening between noon and 8 p.m.  The order or content might change between now and then, and it’s all pretty informal.  Keep checking back to see if there are changes to the parts that interest you.

Noon – 1:30 p.m.: Social Media Lunch and Discussion for agency or organization representatives and those involved in social media.  Bring your own lunch or grab something from one of the great restaurants in our Collingwood neighbourhood and join us to talk about various kinds of social media that you’re using and liking (or not).

- Jules Andre-Brown will warm us up with a presentation about a recent event at “The Hive” where he learned more about the work of Capulet.   The Capulet folks were kind enough to send him the slides from their presentation and they have a lots of great ideas.  He might also talk about Google Analytics.

- We’d like to talk about what people are doing to promote the presence of folks with disabilities in social media, what’s working and what’s not, and how to ensure that we’ve got presence, internet citizenship and the right image.   Maybe we’ll even agree on an overarching social media plan together and some milestones with which we could judge our success?   We want to hear what you’re doing.   If you are an agency, advocacy group or related to our field (or not), just let me know if you’re attending and I’ll add your name and site to this blog entry so people know you’ll be here.   There will be lots of time and an internet connection so we can check out your site and what you’re doing and see what you’re proudest of.

- We’re looking for Space Cowboy partners for a summer workshop.   We’d like to be part of an interagency day long summer workshop on social media with Lee Ann Ragan, who says (in a tweet from @LeeAnnRagan), “lovely! that would be great – am committed to taking back social media fr mktg folk & using it creatively for training”  This is a great introduction to her thinking and work around social media (and her blog is wonderful for trainers and everyone else too).

The rest of the day is open to all community members.

1:30 – 2:30 p.m. Welcome to our new website!  We’ve just redesigned our website as part of a branding process, which was part of our strategic plan, which was the product of 11 different groups of stakeholders using 8 different facilitation methods, including staff, folks we support, families, funders, professionals and colleagues.   It now runs on solar power, communicates telepathically and if you look at it and click your heels three times your wishes come true.   Um, well, not really.  But it does get our message  across in ways that are more clear and congruent, and it’s very very pretty, and it connects with most of the other ways in which we communicate using social media.   Come and take a virtual stroll with us, ask questions, tweet tweets, upload photos and talk about better ways of connecting with people who have similar interests and ideas.

2:30 – 3 Danielle Kelliher from B.C.A.C.L. “Communication Plans and Social Media: a work in progress”   As well as talking about how she’s drafting a plan that incorporates social media, the new Self Advocacy Foundation website is a model of excellence in how self advocates can communicate with each other and the world, and she might be able to talk a bit about it

3 – 4 Jule Hopkins from Community Living B.C. talking about connecting with community through social media and their recent  ”I can be safe online” campaign.   

4 – 5 p.m. What is branding and why does it matter?   Our friend Design Strategist and Creative Director Elena Rivera MacGregor (recently named one of Canada’s top ten most influential Hispanic-Canadians) led us through a number of processes to find out what people thought about our agency (thanks for all the kind words!) and then showed us how what we were presenting could be more congruent with the messages we were giving, and the messages we hoped to give about folks we care about.  It was a great process for us, more involving than we expected, and more interesting.  Come and learn about what Elena does with companies and how she does it.

5 – 6 p.m. Norman Kunc and Emma van Der Kleft, on the verge of opening their new narrative therapy practice in New Westminster, talk about how they’ve used social media for education and training.   Their videos, and videos based on their works, have profoundly affected a new generation.

6 – 7 We’re going to watch and discuss TEDxVictoria Alexandra Samuel Ten Reasons to Stop Apologizing for your Online Life TEDxVictoria  We don’t need to apologize?   Why is Social Media the hottest thing around?  How amazing is the Playing For Change movement?   Have you seen the new L’Arche iBelong! website about making friends and having conversationist that matter?   How about Noah’s Dad’s blog?   Or is it all just a distraction leading to weak connections that aren’t much invested, as Malcolm Gladwell suggests.   Is he right?  Or wrong?  And are you to up to the A-Z Blogging challenge starting in April?

7 – 8 p.m.  Family friendly “Welcome to our new website”  We’ve got two rooms.   Jules will be in one for young people and they’ll go as fast as they want to go and talk about things we don’t understand.    We might even buy them some red bull.   In another room, we’ll go as slow as you want to go and listen to your feedback.   And we have coffee

Attending so far:

Jack Styan, RDSP and Treasurer of the Family Support Institute

Norman Kunc and Emma van Der Kleft  of Broadreach TrainingClick to view slideshow.

Danielle Kelliher, B.C.A.C.L.

Monique Schweitzer-Nelson, PosAbilities Social Media and Family Support

Elena Rivera McGregor, President Rivera Design

Jule Hopkins, Community Living B.C.

How about you?  RSVP Judy at judy@spectrumsociety.org just so we can keep track of numbers…

You are invited to a PUBLIC EVENT: “What is Optimal Individual Service Design? Why Is It Important? How Does It Relate to Social Role Valorisation?”  A Conversation with Dr. Michael Kendrick,

January 31st, 7:30 – 9.    Spectrum Board Room, 3231 Kingsway, Vancouver RSVP Judy 604-323-1433

Spectrum is now involved in its 4th bout of OISD training (two here, and two in Vernon hosted by Kamloops Society for Community Living, Kindale and NOCLS), and we can certainly feel the shift.   Dr Michael Kendrick’s Optimal Individual Service Design is a two week intensive in which a maximum of thirty participants are led through a thoughtful planning process that focuses on proven best practice ways to support people with disabilities.  

Those who have taken the course often say it is transformational.  It introduces evidence based concepts and thinks critically about Social Role Valorisation and the roles that people with disabilities play and might take on in our communities.   The experiential element of actual participating in planning for individuals encourages whole new skill sets which can be taken back into your work or life and used immediately.     

The thirty participating trainees are from all different places – leaders at various levels, community support workers, students and parents – and they support ten focal people with disabilities.   They work in small teams through the two weeks to create plans which are then owned by the individual and may be used to ensure supports are on track, or to take to funders or agencies.

Come and join us for an informal conversation and let us know if you’re interested in being part of an upcoming OISD offering.  We’d love to talk.   We’re also planning to host a meeting of OISD participants later on in the spring, to talk about our experiences and plan how to best leverage this exceptional training.   You can check back here or on the Facebook OISD page.

Sophie, Aaron, Barb Goode, Shelley Nessman, Ryan - at the "Climb Every Mountain" workshop for self advocates, co-facilitated by Shelley and Barb, graphics by Aaron and self advocates, CACL/BCACL/FamilyFocus Conference, Whistler, BC

Shelley Nessman has recently joined the dialogue here at the Spectrum Society as a Consultant on Strategic Initiatives.   Shelley brings wonderful gifts to all our dialogues, and we are excited to introduce our community to Shelley.

Jules :  Shelley, Welcome.  Thanks for meeting with us.  It’s so neat to talk with you as you have such a diverse experience within the community living world here in British Columbia.   Can you tell a bit what your doing now and where some of your experience lies?

Shelley :  I would say I make a contribution to the ongoing conversations that we are having about transforming supports

.

I bring my experiences with CLBC and working with other agencies specifically Richmond Society for Community Living and Vela Microboard Association of B.C.  I’ve also been involved in knowing what is going on around the province for the last 3 years in terms of models of service delivery and such.

Jules :   Thanks for that Shelley.   One place you have a great commitment to the lives of people who have experienced a label of disability and are working to promote what they can contribute to society.

Shelley :  What I have observed over the last while, is that people with labels are really taking the wheel in many ways.   Sometimes they just bypass waiting for leadership and “do it themselves”.

From every region in the Province there are people saying- “I have an important idea I want to present, or a story write.”  An example would be the “No More Barriers” campaign by the Self Advocacy Foundation. There are 3 bloggers who have been posting really interesting questions to get people engaged.

Jules : I think as we talk with communities, more and more we see people having their own unique standards to what a good quality life means. I am interested in people accrediting their own lives.  How can people become their own accreditation?

Shelley : That’s an interesting idea and a neat metaphor really.  Because people in agencies hang on to their practices and might fear listening to what a person wants – because of all the competing things like agency accreditation.  I think that we are all just on a journey about “authenticity”.

Jules : When you say Authenticity,  do you mean within the self advocacy networks, or within the community living syllabus?

Shelley :  I like to think that Community Living is on the forefront of world peace.. I have always thought this is not a “disability related field”.   It’s a Peace Movement

Jules : I am always impressed with your answers.   In closing, what are you planning for the New Year?

Shelley :  I would say my vision for 2012 is to keep conversing, connecting and stretching my understanding of what we are doing here at Spectrum.  I’d love to keep this a dialogue, I’m looking for ways to talk with people and open up this dialogue.

Jules : Yes, that sounds great.  We can start with the comments below.

Shelley will be facilitating workshops, including a new PATH training and story circles, supporting our social enterprise department and leadership initiatives, and looking at U.S. models of support coordination services that might be useful in B.C.

Dr Michael Kendrick’s Optimal Individual Service Design is a two week intensive in which a maximum of thirty participants are led through a thoughtful planning process that focuses on proven best practice ways to support people with disabilities.  

Those who have taken the course often say it is transformational.  It introduces evidence based concepts and thinks critically about Social Role Valorisation and the roles that people with disabilities play and might take on in our communities.   The experiential element of actual participating in planning for individuals encourages whole new skill sets which can be taken back into your work or life and used immediately.     

The thirty participating trainees are from all different places – leaders at various levels, community support workers, students and parents – and they support ten focal people with disabilities.   They work in small teams through the two weeks to create plans which are then owned by the individual and may be used to ensure supports are on track, or to take to funders or agencies.

Agencies who sponsor people to attend also have opportunities to sit at the back of the room while Michael Kendrick, Lorna Sullivan and Dennis Harkins talk about their own experiences of person-centredness and agency transformation (when private information is not being discussed).   Prior to the course, we will have a schedule for participants and another schedule for those wishing to sit in and learn.   As the time grows closer we will also try to offer free evenings for families and self advocates who have wish to meet the instructors and ask questions.

We’ve participated before in offering this by partnering with other agencies and would be glad to do so this time as well.   Please contact aaron@spectrumsociety.org for more information or check our eventbrite registration site http://michaelkendrickoisd2012.eventbrite.com/

To learn more about Dr. Michael Kendrick, visit his website at www.kendrickconsulting.org

“My association with Michael Kendrick began nearly twenty years ago, when advocates from Connecticut became interested in the innovative approaches to human service reform and community development that he was helping to fostering in Western Massachusetts. His initial work with our agency staff involved training, introducing us to the concepts and disciplines of “normalization” (later Social Role Valorization) theory. Soon, however, our Office began to rely on Michael to consult on program design and advocacy strategies. As we responded to legislative mandates and requirements arising from class action lawsuits, Michael guided and facilitated our efforts to develop both legally based, professional advocacy programs and community based, Citizen Advocacy projects for people leaving Connecticut institutions.

Over the years we have asked him to prepare formal studies on questions of organizational structure and strategy, to develop and provide training to community groups and boards, to serve as an expert witness, and to lead discussions amongst our Board and staff members as we periodically re-examine our commitments and priorities. Michael can always be counted on to recognize and penetrate to the heart of the issue; to bring fresh insights and inspiration. His deep understanding of the dynamics of societal change and systems reform, coupled with his awesome intellect, essential goodness and, not least, his wry sense of humour bring unique, authentic and lasting contributions to our common struggles on behalf of people with disabilities and their families.”  James D. McGaughey, Updated Nov 12, 2003

Check out other testimonials here.   

Its been an amazing year – I’m not even sure how to sit down and put together how amazing its all been…

Spectrum’s new website, with our new logo, will roll out any day now.  What an interesting process and bigger than we expected – to figure out (with someone who knows how – the marvellous Elena Rivera) what we stand for and want to convey and how to do that in colour, with a new logo that has to do with listening to each other and cycles of interdependence.  I’m really excited about a new feature called “our stories” – there are just a few entries so far but we’ll build on these as time goes by (send us yours!).   This year we’re preparing to celebrate 25 years of successful supports to folks living in our neighbourhoods – and things have changed a lot, in the world, in government, for people with disabilities, in our own concepts of what “the work” is.

Spectrum Press had a wonderful launch for Barb Goode’s book and opened an online storefront which has received orders from Australia, New Zealand, the United Kingdom, all across the states and Canada.  We’re putting together what we think is an amazing anthology of current thinking about how people with disabilities can be supported, for next year, plus our first children’s book and a new book by Susan Stanfield that is just great.   Look for another great launch party in October 2012 – with David Pitonyak (a featured writer in our new anthology) in attendance.

The Personal Support Networks project, aka the 101friends project, has gone on to work with groups of self advocates to create documents that are meaningful to them and their friends in their lives – we’re proud to have been part of C.L.B.C.’s growing arsenal of best practice and accessible literature about our field, as well as continuing to offer training (this year we’ve been as far as New York state, San Francisco and Atlanta, Georgia, as well as around the province) that brings groups of families, support workers, self advocates and government workers together in ways that build trust and confidence.   As of October we’ve added Shelley Nessman to the mix – to our huge delight!   And now we’re building a new set of workshops to offer.   We’ve also been delighted to support workshops by Mary Kealy, from Ireland, Dr Michael Kendrick, who knows more about best practices than anyone, David Pitonyak, Barb Goode, Jule Hopkins, Pat Fratangelo, business leader Michael Walsh of Kaizen Consulting, Norman Kunc and Emma Van der Klift.  Norman and Emma, particularly, are great new friends and we’re looking forward to spending more time with them and, with every event, learning more from people who should be national treasures.

The Better Networks (for Better Lives) project began almost 9 months ago as a priority for our new strategic plan and we’ve learned so much already.   What happens, we wondered, if we throw all we know and all we can do behind about ten individuals who are looking for more leadership in their own lives and supports?   The commitment and perceptiveness of those who support them has been incredible, and the way that the folks involved have jumped in to seize the opportunity to let us know what works (and doesn’t) in their lives has been great.   We imagined this little group as the nucleus to agency transformation – a kind of kindling of spirits and skills that would build and grow and ignite (this idea came out of a PATH with our management team in which their “north star” was a lit match held up against the world) – so as both staff and those we help organize supports for have come in to increasingly ask “how do we spread the word?  how do I involve my friends and colleagues?” we’ve known we’re on the right track.

A thing that we’re all really proud of are all the collaborations and partnerships that have developed through these various streams of our work – our good relations with families, advocacy groups like B.C. People First, B.C.A.C.L., and the Vancouver Parents Transition Group, professionals, other organizations and government.  We are led in this idea of connection by those we support…  by their insistence on finding ways to be peaceful and grow together.   Our hope is that in the coming year this quality which we’ve learned so much from will grow in us, and in all our colleagues, and that the potential leadership of people with disabilities as an ethical, humane force in the world will be increasingly recognized.

I could certainly try to thank everyone who has been involved in all of this but it’s a pretty long list and I’m pretty sure I’d forget someone.   So instead, of the many people we might thank, I will thank one person who has singularly led us forward and keeps showing up and asking “How can I help?  What can I do?” and voices her ideas to the enrichment of us all.   When we first met Barb at Pearson Hospital and she asked us to help her get free, hopefully before she turned 60 (!), we hoped she’d be part of our “family” and her contributions have been immense.   The photo slideshow at the top of this article just gives a sense of her life.   She’s a great friend to us all, and to Spectrum.   Happy New Year, Barb! (and Happy Birthday too!)

Yours, Aaron

People with Intellectual Disabilities: Towards a good life?

British researchers Kelley Johnson and Jan Walmsley are well known in the field of disability studies for their innovative work around inclusive research, in which people with disabilities are trained to conduct, record and present research about aspects that are meaningful in their own lives.   Marie Wolfe is an Irish self advocate who “sees it as her vocation” to advocate for the rights of people with intellectual disabilities.   Together they’ve written this rather wonderful book which deserves our attention.

There has been a great deal of discussion about what makes “a good life” for people with disabilities over the last couple of decades.   Much of this is based on the work of Dr. Robert Schalock and others looking at what qualities are in a good life for everyone, and then extrapolating from this to the lives of people with disabilities, often with a numbers-based quantitative focus.   Johnson and Walmsley approach things from a somewhat different angle, looking more directly at the lives of people with disabilities through a social construction lens and then gathering evidence from mixed research methods to think through how people with disabilities have been positioned as the receivers of services, citizens and neighbours, and how they might be included in the future.

I am a great fan of Johnson and Walmsley (google either or both of them and spend a day looking at their work to get a whole new sense of what’s happening in the world) and I like how they’ve grounded what they know about recent research, which is a great deal, with Marie’s contributions about how she lives her own life and what makes it meaningful and “good” for her:

 “I like it when I don’t have people telling me what to do kind of.  My own life.   When I am my own boss.   That’s how I like it.  Just having my own space you know.   Sometimes it can get a bit annoying if you don’t have enough to do kind of.

            “I would like to keep doing the work I am doing and keep doing what I am doing.   As long as I can.   And as long as I am helping somebody I am happy.   As long as somebody gets something out of it I am happy you know.”

 Marie’s ideas are broken down into themes which Johnson and Walmsley expand upon to “explore some of the ideas and theories that underpin Marie’s view of what a good life is.”   The authors look critically at how the idea of a “good life” has been constructed in Western Civilisation, and particularly how this worked (or did not) for minorities and those with less power.   The difficulty is that without “clarity about underlying values that drive policies” we can end up with “confusion in practice,” “a superficial view of what terms like ‘inclusion’ . . . mean,” and no “real coherence” – they ask is a good life just about having one’s own house, a job and relationships?  And of these, how many would one need?

The idea of a “good life” for people with disabilities is very new, Johnson and Walmsley assert, and historically even the most progressive standards have been more directed towards an “average” life, a “normal” life or an included life.   So how is it that, while people with disabilities still wrestle with prejudice, poverty and lack of access, and lack of free choices, we’ve moved on to “good”?  What does it mean?

This book provides a context for many of the discussions around how supports for people with disabilities might be organized and led by them and those who care about them by examining a wealth of quantitative (numbers based) and qualitative (story based) research.   Opening the book at random to give you a sense of this, in just two pages, the authors look at how to “disentangle” activism and how this relates to the need for a “vital” personalized, individualized response – a good life is different for each of us.   They then move on to the reflections of a interviewer as she realized, looking back on her notes, how easy it had been to edit and direct the stories of her contributors with disabilities, despite her intention to include.  “Rhetoric from academics, advocates and campaigning groups can paradoxically play into the hands of those who wish to minimise and simplify a complex set of problems,” they write.   They then examine empirical evidence from a study of the actual lives of people with disabilities and begin to dissect the idea of “Worklessness, in an age when citizenship is all too often conditional on a relationship to paid employment” and the kind of extreme poverty that can be a central feature in the lives of people with disabilities.

I was particularly glad to see the roles of paid supporters covered in a thoughtful, considerate way – so often paid supporters are discounted, rather than brought into these conversations as valued and informed participants.   I also very much appreciated what is essentially a history of the idea of “capability” and “reason” as it applies to the idea of informed decision-making as a necessary part of citizenship.   These are ideas that are so embedded in our culture, and so impactful on people with disabilities, that it was great to see them so clearly defined and delineated.

Who might benefit from this text?   It is always too easy to sort out the practice of supporting people with disabilities in their communities from the relatively new field of disability studies in universities, and think they are unrelated.   This book might be in danger of being thought of as merely a text book for such courses – and while it’s a great text for disability studies, this would be a great shame.   Policy analysts certainly would find this a good text to contextualize their work.   Agency leaders would find it, I think, a wonderful thinking through of the rationale behind what we’ve done and what we do.   Literate and informed staff would be excited by the accessibility and logical progression of the text, and the drawing on of various kinds of resources.   Staff trainers would find much to draw on in their own work from this text.  Given all of this, this might not be an easy read for those unused to reading research based texts but if you are going to read one book this year, and you care about people with disabilities, this might be a great choice.   Self advocates might enjoy the parts of the text which come from Marie – these in themselves could lead to great conversations about people’s lives, aspirations and contributions, and everyone, from board members to staff and families, seems in general agreement that the first hand stories of the lives of people with disabilities are often what move us to action and what we remember best.   That Johnson and Walmsley have used Marie’s stories as the basis for an expansive conversation about the complexity of how history and cultural pressures have shaped perceptions of disability, and how we might best work together to seek new possibilities, seems an excellent method.

I definitely recommend this book.

For those who are happy with group models, there are many organizations that provide these and the methods are relatively clear after a half century.   Often families and individuals, however, are told that no other options are available to them,  or that only the next favourite model of the day is possible – which might not be what they’re looking for (for example, home sharing – check out Susan’s article).   However, it is not that other options don’t exist and some of them have been operating successfully for decades as well.

Recently, a couple of unrelated individuals asked for assistance in mapping out an advocacy strategy that would allow them to control their own staff, after years of not having input into who they worked with in two rather large organizations.   We sat and made notes about what they would ask for, and it all seemed quite reasonable but both came out of their individual “person centred planning” meetings having been told that a) there are no other options for them and b) their funded hours were part of global contracts that could not be broken up.   Another friend who mapped out his own very beautiful person centred plan with his support network, to present to his agency at his individualised planning meeting, came back with a plan designed by (and for) the agency, which said things like, “X has given input into staffing that will be directed to HR and an appropriate staff will be chosen for him and monitored by his program supervisor.”   What he’d asked for was input into hiring, to attend interviews, and to be part of evaluations.   In any of the organizations listed here, none of this would have even been a conversation – the assumption would be that any of the three of them would be as involved as possible in all decisions about their lives.

One way to figure out how to do a great job of being person-centred, is to look at what others are doing well, so I’ve been trying to track organizations recommended by a number of people that might interest those looking for models of how to help people to organize their supports*.   I haven’t visited all these organizations but I’d like to.   I have talked to most of them, and to people who are assisted to organize their supports, and to their families and staff, and their feedback has been congruent with their organizational missions.   That none of these options exist locally doesn’t mean that none of them could – often these initiatives are started by one parent or a few people who want something different.   Here are five that offer interesting alternatives to larger organizations focused on congregate care and group living options.

I was hoping to meet someone from Georgia Options on a recent trip to Atlanta, but didn’t make the space for it unfortunately.  I love their website – it’s clear and articulate:  “Georgia Options, a grassroots non-profit organization started by a small group of family members, people with disabilities, and other citizens, began offering supports to five people in 1992. These five people and their families began to experience a new freedom and independence.”  “Georgia Options is unique in that we attach services to individuals rather than to places. We support people in choosing where they want to live, with whom they want to live, and how they want to live. All of the people we serve live in their own homes. Some of the people we serve receive support 24/7/365, some 8-12 hours per day, and others just 20 hours a week. We strive to provide 1:1 support as much as possible, allowing each person the opportunity to pursue his or her hopes and dreams, to be active in the community, and to live the best life possible.”  I particularly like this sensitive and inspirational article by founder and parent Mary Kissel.

Living in Friendship Everyday, Inc….. mostly called LIFE  and In The Company of Friends are related organizations in Manitoba:  “In The Company of Friends (ICOF) is a funding model offered by Manitoba Family Services and Consumer Affairs to Manitobans with intellectual disabilities.  People who choose this option want to self-direct and manage their own lives each day with help from friends and family, instead of receiving residential and/or day services from an agency.”   The focal person works with their support network to manage their supports.    To assist in forming and sustaining their support network, focal people can access In The Company of Life Everyday Inc., which provides “resources, training, information and case management to individuals receiving ICOF funding.  The Department of Family Services and Consumer Affairs contracts LIFE to ensure each person has a strong and functioning Support Network that supports his/her desires and autonomy.  LIFE is responsible for ensuring that the integrity of the model is upheld at all times.”

Neighbours, Inc. in New Jersey is run by C.E.O. Patti Scott and “is an innovative non-profit organization created specifically to support people with disabilities and their families in choosing and designing a life for themselves within their local towns and neighborhoods” by focusing on networks of support, citizenship values, and fostering social roles which allow focal persons to be perceived as people sharing gifts.    An interesting part of this organization is that it is really a network of smaller organizations each dedicated to slightly different purposes.   The belief of their board of directors is that organizations that become too large to know all of the players lose their ability to focus on individuals.   Neighbours Inc. also has an active publishing arm which creates and provides supports to folks, such as The Listening Book, “A workbook that serves as a guide for conversations with people who are seeking to have more control in directing their own lives. The workbook covers topics such as important relationships and networks, personal interests, living arrangements, employment and income, health and support needs, backup plans, budgeting, and more. The format serves as a valuable resource for planning as it acts as a reference point to reflect back on, and collects information that can be used in more formal plans.”  Often organizations such as these publish or print their own “text books” because they are creating new infrastructures as they need them.

Onondaga Community Living is the creation of a far-thinking board of directors and Executive Director Pat Fratengelo.   We were lucky enough to spend time with Pat, board members, staff, leaders, folks supported, evaluators and academics during a week long visit there at the beginning of the year which led to this article.   A striking thing about Onondaga is simply the intelligence of its perspectives and how they think critically about what they do.   On the front page of their site is a link to this article by Dr Michael Kendrick about agencies focused on transformation, which speaks to many of the ideas embedded in these organizations.

Total Living Concept, known as TLC, is in Kent, Washington, and negotiates its way through a whole different U.S. funding and compliance system than anything we have in Canada.   While some of these organizations simply began with a different idea, others went through interesting transformations, in this case led by long time advocates Lyle and Mary Romer:  “In the beginning, TLC only operated group homes, which provided congregated living options for people with developmental disabilities. Through the process of constant self-evaluation and listening to the people being supported, TLC gradually moved away from congregated housing options to providing individualized support enabling each person to live in their own home. The state refers to this as Supported Living. Many people choose to reduce their living expenses by sharing their homes with housemates who do not receive services from TLC, but rather are members of our general community. TLC is very proud to support people to live where they want, with whom they want, for as long as they want, according to their own personal lifestyle choices.”

If you know of other organizations that you’d like to see included in this list, please let me know at aaron@spectrumsociety.org   I’ll try to keep updating it under the tag “support alternatives.”  If you visit or if your supports are organized by any of these folks, find out who best you could send some positive feedback to – government funders need to know that alternatives to traditional models are supported.

*I’d like to thank Dr Lyle Romer for this phrase “helping people to organize their supports” because, as he explained it to me when he corrected my use of “we support people,” it began for me to encapsulate a difference in attitudes around authentic person-centredness, which focus on the actual and potential leadership of the person with the disability, and what passes for person centredness, referring to agencies that rush to get all their person centred plans done to meet some external deadline (accreditation, government, policy) rather than take a stand for personalism as a philosophical stance.   There are some great essays online about Wolfensberger and the idea of personalism, which essentially is the philosophy that the person is the *most* important factor – whereas often decisions are made which have to do with finances, staff needs, unions, agency protocols, government driven projects, or available models.   Instead, a personalist approach begins and ends with the choices of the individual.

Jack Canfield

Find a Team that Shares your Dreams

Sometimes when we talk about supporting people with disabilities to identify and share their goals, people will say that “we” (people without disabilities) don’t have goals so why should they?  So it’s an interesting time to consider this idea when all around us people (without disabilities) are saying they’ll lose weight, quit smoking, drink more water, make new friends, work harder or work less hard, or take a class, or…?  In fact, most of us do have goals.

I like how Jack Canfield talks about setting goals.   One of the things he says is that a lot of us are afraid to set goals because we’ve worked hard to accomplish things previously, and then realized it wasn’t what we wanted – he says something like “we put our ladder up against the wrong house, climbed to the peak and realized it was the wrong roof – and we don’t want to do that again!”  This idea made a lot of sense to me when I first heard it – but the “wrong” goals might just be the right goal at the wrong time, or they might be things that show us where to redirect our energy.   As we get more experienced in goal setting and accomplishment, we can get closer and closer to what we really want, and we can support those we care about in the same way.

Canfield also talks about the idea of a goal oriented GPS – that if we write down what we want, and put reminders in places where we’ll notice them, and make affirmations – getting to our goals becomes much more likely.   Someone else talks about a “north star” – a vision of us accomplishing our goals that can guide us.

Another thing Canfield talks about in terms of goals is how to use your network to accomplish them, in a few ways.    First, if you find an accountability partner they can help you stay on track.    If you are swerving off-course it’s their job to tell you so, and then you can redirect yourself.   Second, he suggests finding a mentor – this is a great idea and he calls it something like “find a wing to climb under” – someone who has what you’d like to have, or does what you’d like to learn how to do, or just has qualities you’d like in your own life.   Finding, asking, and spending time with a mentor can also be a great way to expand your network.   Third, surround yourself with people who support the goals you have made and keep reminding yourself of – sometimes we think we’re being kind and even instructive by continuing to include people in our lives who are always negative, but it might be healthier for us and for them if we cut the ties and say enough is enough, or at least minimize contact.

You can learn more about Jack Canfield’s ideas in his book The Success Principles: How to Get from Where You Are to Where You Want to Be.   It’s a great book to bring in the New Year.   One opportunity in supporting people to share their dreams and goals is that as we support their aspirations, we can learn how to dream and set goals for ourselves, and then support each other.

25 years ago when, to my surprise, I found myself working supporting people with disabilities it was hard enough to explain what I did.   So are you like a practical nurse?  People would ask.   Are you like a house parent?  Are you like a teacher?   You’re probably really good at this because you’re big and strong and those people are intimidated.   Yikes.  None of these ideas really reflected the kind of joy I found in the relationships I developed with people, some of whom could only smile, or move their eyes left or right, so I would talk about what we did together.

Every year one of our family’s holiday traditions is to catch a performance of the Universal Gospel Choir.   We like their message of appreciating difference and similarities, and their intention to bring people together, and the loving energy with which they perform, and we have friends who sing with them that we like to see on stage, appreciating them, too, in these different roles.   Years that we go to a performance are better than years that we have missed them.   They enspirit our holiday season.

Singing amazes me.   Music amazes me.   I have no natural musical talent and until recently had little musical education.   Well, none.  I’m not from a musical family – we didn’t listen to music, we had no stereo, no recordings, and the radio was tuned to weather forecasts.   When I turned 50 I began music lessons and learned a great deal – enough to convince me I should focus on other areas on enrichment but also enough to be able to listen differently – but that’s another story.   But is it a story about a “clinical” approach to something I wanted to know?  If I’d waited for what might be a “natural” approach to learning more about music, I’d still be waiting.   And this year, for perhaps the first time, I was able to at least clap along to a beat I could hear.   I was able, in some way, to participate.

The Universal Gospel Choir enters the room in a kind of informal, pregnant procession.    Kathryn Nicholson is the Musical Director and she says a few words and then she raises one hand, and then the other, and she begins to move her fingers and palms and arms and body and the voices begin to soar – linking together like flocks of birds suddenly in alignment, then some drop out, others join in, soaring higher and higher.   I spend the whole evening watching her.   How does she do this?  – I understand there are cues I am not trained in which the choir is responding to, and that they’ve done this again and again in rehearsal and performance so they know their way around the soaring intimately… and then one voice flies further and perhaps it’s something new and unexpected and perhaps Kathryn does something and then other voices follow… a kind of jazz responsiveness.   Perhaps this also happens when a singer makes mistakes, but I wouldn’t know a mistake if I heard one – but I like to think of someone in the choir caught offguard by, perhaps, a memory and his voice quivers instead of soars and the other singers, somehow organized by Kathryn in a single moment, swoop down – the tenors fly under to cushion him, the sopranos rise to give him some kind of map to re-locate himself, and then he is again part of a congruent whole.   And everyone is richer for it, including people like me who don’t even know the details but appreciate the gift.

One of the choir members, speaking to the audience, says that while we get to see Kathryrn’s hands and arms and body move the choir, facing her, get to see her emotive face, and follow her expressions of joy and hope and sorrow and connection…  there’s a part of the dynamic that we don’t even know about.

I think of my music teacher – a genius who can do anything with sounds – and how one day he was trying to teach me the 8 bar blues and I’d been practicing for a month but still had to keep count, laboriously keep track in a way that wasn’t natural for me.   And he said, “let’s try this, you just play, just move your fingers over the strings and pick notes.”  And as I did he responded with his own guitar, riffing, grabbing my awkward notes and turning them into something else, something song-like.   For a moment I was proficient.  “There, you see, you’re not half bad after all!” he said.

I watch people in rooms – people with and without disabilities – as they move from person to person, small groups flocking to them, connecting, leaning in, smiling laughing, parting, reconnecting in other forms.   Someone introduces someone to someone else; someone connects someone to a new person, knowing they have something in common.   Someone, knowing that someone else is looking for a job, guides them over to someone who is hiring.   Someone goes to the woman standing alone in the corner, speaks gently, smiles, and as she leans forward they move slightly backwards into the larger group and the woman follows, a kind of dance and then she is suddenly part of something.  She’s smiling now.  Oh, says the person who introduced themselves, have you met her – she made this beautiful scarf – you’re interested in knitting so you’ll like so and so…  and this is another person – they drive right past your house on their way to yoga every Thursday night and they could pick you up and drop you off.    They hate to drive alone.  Connecting…

I have some people in my life who can do this.  I married into a family of people who do this constantly.   They are so good at it they have no idea they do it – after repeated practice their abilities have become intuitive.  The more time I spend with them the better I get at it.  I am lucky enough to work with some people who can do this.  I was lucky enough, when I went off to university, to meet professors who excelled in this and they taught me how to do it.  It’s the most important thing I learned at university.    It’s also the most important thing I learned as a People First advisor – self advocate Arnold Bennington would say things like, “I like to go and talk to the new person in the room who doesn’t know anyone because they need a little welcome and later on they’ll never forget it Aaron.   And we always need more friends.”   Indeed.

So I am better at it than I was raised to be, because I’ve learned from masters and I wanted to learn.   Learning how has allowed me to meet and introduce myself to some of my greatest heroes, who have become friends and colleagues, and it’s allowed me to form connections that, when I need them, are glad to be there.   The evidence of the last two decades in research around being connected and being lonely suggest that I will live longer because of this connectedness, I will have more opportunities, I will get sick less and when I do get sick I will recover faster, I will have less tendency to depression and will be less likely to suffer from mental health concerns.

Research in the new field of interpersonal neurobiology shows that the more connected we are, the more capable the executive functioning of our brains will be.   Think about this for a moment.   We disable people by not focusing on connectedness in their lives.

My most important mentor did not say these things to me, because we didn’t know them then, she said the thing I tell my son now, “It is our obligation to make people comfortable because in the end it’s all about graciousness.  It is about making each other’s lives easier and better.”   This idea positions one differently and is a way to re-think our positions as informal choir directors in social settings – one of my mantras is, “Everyone here is less comfortable than I am.”   When I started saying it to myself I believed it was an affirmation, not a reality.   But it has actually become a reality.  This is quite different from my old thought, which was that I was the shyest person in the room and it would be much harder for me to say hello to someone than for anyone to say hello to me; thus, I should just wait to be greeted.   I was owed a greeting.  That mantra gets you nowhere.   Mostly people are so grateful when you come over to say hello, when you introduce them to someone, make a connection, build depth in the conversation so that they can talk about what they love with someone who also loves that thing.

The study and practice of this does not, I think, denigrate it.   I think to not pay attention is more likely to do damage, and we more routinely ignore connectedness.   In the lives of people with disabilities we think of it as a kind of whipped cream on a good life – once we do the rest – get someone healthy, find them work, find them a safe place to live – then we can talk about their connectedness and community.   Yet, approach it the other way – help them build a community of people who will keep them safe, who know more about what jobs they’d like than we ever could, who will help them connect to communities they are already part of, in ways we can rarely parachute into as staff or professionals.   We don’t talk about it enough, we don’t help each other enough to figure it out and we don’t value it.   To imagine that it is either “natural” or “clinical” is to miss the point – we are all in a process that is partly out of our hearts and can be assisted by our brains.   We can all get better at this.

I was thinking of looking up how a choir director learns how to be a choir director – but I think I will leave it to be a mystery.   I don’t need to know.   I don’t want to be a choir director.  I’m quite happy to actually be able to clap along.  However, if my work was to increase the potential of the choir, to keep them enthused and motivated and feeling good about their involvement and willing to show up for all the rehearsals, until what seems in performance quite natural has been practiced into intuitiveness, I’d want to know how.   I’d need to know.

It’s 3:00 o’clock in the afternoon and Chris and I are standing on the platform of the Canada line stop at Broadway/City hall station. “Where the heck is the train?” asks Chris, even though he knows when it’s coming. “Couple of minutes” I say, just to make conversation. Chris proceeds to test the echo in the tunnel by whooping loudly. He often does this when he is excited. Meanwhile, I am having a debate in my head about the usefulness of us riding the Canada Line. How is this going to benefit Chris, I wonder to myself. Are we wasting our time? Should we be pursuing something more constructive? I am lost in thought as the train rolls up. Chris makes a bee line for the front car.

I walk myself to the front car and take a seat three rows back from the nose of the train. Chris goes right to the front window and stands there, even though there are lots of seats. It’s clear to me how much he enjoys being here and it brings about a little change in my mood. As we roll down the line, Chris calls out the stops, making sure he says “King Edward Station” before the “pesky” computerized voice can do so. He does this for every station. At Marine Drive Station he turns to a couple and asks them if this is their first time riding on the new train, which it turns out it is. Chris asks them where they are going and upon hearing their response he tells them which stop they should get off at. It’s easy to see that Chris really likes to help other people out.

I continue to think. I wonder if I should do something. Here I am just sitting back and watching Chris talk with people on the Canada Line and I am doing nothing. Worse off, I am getting paid for it. I feel a little guilty. I wonder to myself if I should give Chris some advice on his social skills, maybe suggest to him to use appropriate interpersonal distance. In the past I may have gotten out of my seat and reminded him, but I know that doing so would only create tension with him. And rightfully so. I know I wouldn’t like it if someone commented to me that I was doing things wrong while I was in the middle of a conversation.  I struggle with the idea that maybe I’m not supposed to do anything at all. So here I am sitting on the train thinking about how I should be implementing some program and meanwhile Chris is succeeding in connecting with members of the public without any help from me.

Now maybe I think too much, but all of this passed through my head as we travelled the ten minutes from Broadway to Richmond. As I stepped off of the train into the sunlight at the terminus Richmond Centre Station I couldn’t help but feel pretty good. I often think to myself that I have much to learn from the people we support and the situations we find ourselves in, and today I learned a valuable lesson. It may not be about programs and strategies to help people get better, but about just being with a person in a situation they feel comfortable and confident. Chris knows the majority of the train and bus routes in the lower mainland and loves to ride them. He also loves to be helpful. When he is in such a place, he has no problems connecting with those around him. My job may be as simple as staying out of his way. I have a smile on my face as we walk from one end of the platform to the other and board the train, at what will be the new front. Chris again positions himself at the window, not unlike a streetcar conductor, and gets ready to do it all again.

Norman Kunc, at the "welcome" dinner, TASH 2011, inspiring a whole room full of people to look where the keys might be found, not just in the places where looking is easiest

Well, it’s a dirty trick Mr. Weather.   I’ve been looking forward to coming to Atlanta for months, not least because it would mean leaving Vancouver weather in later November and coming down to some sun and warmth.   Instead, it’s bitterly cold.  Only a few Canadians, like us, have thought to bring toques but it’s still hard to spend time outside the hotel and the day we arrived here snow was predicted.   I am at TASH 2011, and “No More Excuses” is the theme.   In 25 years of my career in supporting folks with intellectual disabilities this is my sixth TASH conference.   TASH is an international organization of advocates, families, self advocates, educators and service providers interested in the social justice and practice issues around people with disabilities.   There is lots of information at www.tash.org   There is lots of talk, both at home and here, about money and funding, so it’s impossible not to be wondering about traveling so far.   We’ve had other tight years, in one of which I ended up attending and paying my own way, just to find myself in a place where I was exposed to the newest, best, most fresh information in our field.    The first day in on this year’s conference, it’s not exception…

For example, today I spent time with Jack Pierpoint and Linda Kahn, publishers and educators from www.inclusion.com – a Canadian treasure; with Carole Blessed from Cornell University, the co-editor of the new book Citizenship and Person-Centred Work; I was in small groups with people from Alaska, Maine, Idaho, Maryland, Africa, South America – parents, self advocates and people who provide supports – looking at questions such as “What is your story of fearless leadership?”   Tomorrow and the next day we’ll be choosing from a dozen concurrent sessions with leaders from self advocate groups and universities, parents’ groups and civic projects focused on inclusion, and service providers who have found new ways of focusing their supports.    I connected with some of the other folks from the TASH committee on community inclusion for adults that I serve on.   I spent some time watching a new documentary about the history of the inclusion of people with disabilities as a civil rights movement.   I took an opportunity to meet John O’Brien, a long time hero, and then I hung out a bit with Norman Kunc and Emma Vand der Klift before Norm’s presentation in which he used the metaphor of searching for the key that you need when it’s dark – do you search where the light is, because that’s the easiest place to search, or do you grapple with the shadows to find the key that you really need?

So these are all singular experiences that I cannot have anywhere else.   TASH conferences are where we’ve done some of our best learning as an agency.   We came back from our first one realizing that we didn’t actually need to create another group homes for people (the idea of a group home was itself kind of radical at the time, as people moved out of institutions) we could support them in smaller, more individualised homes.   Instead of merely depending on the infrequent visits of governmental monitors leaving papertrails we could create places where families were welcome, where people could invite their friends from work in, and that those families and friends would have higher expectations of our services and be more concerned with safety and security.   At the time TASH was the only place we were exposed to such ideas.   People could work.   Everyone could work.  People who work feel better about themselves and are more easily included in their communities.   Even people with severe and profound disabilities (who were the people who interested me) could work – it was up to us to support them in more creative, normative ways and make it happen.   This could be or real work!  Not a day program, but a life.   There was a marvellous speaker at TASH who came every year and gave a talk called something like “101 Jobs for People of All Abilities.”  It was literally just a barrage – an abundance of images, picture after picture (on slides I think, pre-powerpoint!) – of people working.  One of them was of a man with this huge smile who, with his only working hand, organized letters for a mail out.   He looked so thrilled and proud.  We came back and got everyone who wanted to work a job.   And they all looked equally proud and thrilled.

Pat Mirenda introduced us to the idea that anyone can communicate.   Lou Brown talked about how “pre means never” and we figured out how to move the folks we supported out of the “pre-employment” programs they’d been in for years, and got them jobs.   One of them went from showing up day after day and sleeping on the “pre-employment” centre sofa to working as a co-handiman in an apartment building.   Robert Perske talked to us about social justice.   We learned about autism, not as a diagnosis of difference, but as a factor in someone’s life that could be supported if we focused first on the normative rather than the difference.   TASH gave us a bigger picture, a bigger sea to swim in, the newest and most innovative minds sharing what was working for them.

For us to support people with disabilities to take their places at the table, we needed to be willing to take our own place at the tables, to share leadership, to participate.   Tomorrow we are part of a panel presenting on how to create documents that work for self advocates, for self advocates.   Tonight at dinner we dined with lovely elegant elders – women who had lived through decades of changes at TASH and for whom it had been the factor that kept them going.   They were kind of breathless and excited about or presentation: “Imagine that!” they said, “actually working with people who will be using the documents to create them!  It shouldn’t be innovative, but it is.”   A friend says that she’s brought her staff down and can we meet for drinks later as they’d like to spend some time with us, as they’ve read our books.    Linda Perry says, in a quote I often think of, that the test of our work is “who is at the table?”  If our dinner tables are not as diverse as our communities, we might want to look at that.   I’m thinking there’s also something in there about which tables one gets invited too.

In a study I’ve been doing of self-advocate literature I’ve been interested to find that 100% of what is a relatively small sample of self advocate leaders talk about the importance of conferences like this.   They say it’s hard to find the money, and they talk about how it is fun to come, and their attendance can be perceived as merely a fun way to travel to new places, but that at such conferences they realize their true goals through a kind of cross-pollination between people from all over talking about possibility and also the “how” of what they need to do to be included.   They also tell stories of wasted years in various kinds of classes and programs where they were unable to learn in the ways that worked for them.

is Studying education in university, one of my favourite theories was from Paolo Freire’s Pedagogy of the Oppressed, about co-learning – Freire says that we must meet those we intend to teach “where they are” and build on what they know, learning ourselves along the way, and that if one has an understanding of teaching in its fullest sense, we can teach (and learn) anything.   It’s a very conscious, very direct move away from the kind of ego-based lecture format that doesn’t work for so many people.   Freire came by this idea out of his own experience of trying to learn in poverty: “I didn’t understand anything because of my hunger. I wasn’t dumb. It wasn’t lack of interest. My social condition didn’t allow me to have an education. Experience showed me once again the relationship between social class and knowledge.”  Hungry, poor and anxious he slipped back four grades in school.   Somehow, he went on to study law, philosophy and languages but before he became a lawyer was “called” to teach as an avocation.   At the time, in Brazil, one needed to be literate to vote so Freire took it upon himself to teach the illiterate lowest classes to read so they could participate.   He helped them form thousands of “culture circles” where they taught each other, after a successful experiment in which he taught 300 sugar cane workers to read in 45 days.  For me, this was the other part of Freire that I loved: he was as interested in practice as in theory.

Or, as Lao Tzu says is the Tao te Ching, “Go to the people.  Live with them, learn from them, love them, start with what they know, build with what they have.”  Our friend Mary Romer has this above her work table, and now I do too.  Mary and her husband Lyle, who run an amazing, person-centred agency in Kent, Washington, will be presenting at this conference and that session is a priority for me to attend because they are people I learn from, with every interaction.

One of the first places that people look when they are trying to reduce budgets is training.   We see this all through our culture – cuts in the schools, cuts to training in hospitals and social services – a kind of pulling in of arms and legs to focus better on the centre of actual services…  it’s a false economy.   It leaves one open to only hearing the stories that those with vested interests want us to hear.   There is, says Michael Kendrick, a bigger, wider world out there – if what you want is to be a big frog in a small pond, by all means do that – but if you really want to know what’s working in some of the best practices go further and wider and farther to look at it.   So we do, and we will return humbled and excited about new things we’ve heard, and also proud of what we’ve accomplished in B.C..

By the way, if you’ve been wondering about purchasing books for small groups for training, which apparently some folks have been looking to do, we have a special on at Spectrum Press in honor of TASH 2011 which we call 15/15/15 – get 15 copies each of our two books on support networks for 15% off.  

Perhaps the most intensive and transformational training currently offered around North America in our field, based on growing analytical and critical thinking and firmly rooted in Social Role Valorisation and knowledge of best practices around the world, Optimal Individual Service Design is a two week co-facilitated course that has been offered in many countries with excellent feedback from participants, who have said they came away informed, transformed and with a new sense of purpose and the training to allow them to accomplish new goals for those they care about.  

In effect, there is the two week course, for thirty participating trainees, and there are ten focal people who work with small teams through the two weeks to create plans which are then owned by the individual, and then there are also opportunities to sit at the back of the room while Michael Kendrick, Lorna Sullivan and Dennis Harkins talk about their own experiences of person-centredness and agency transformation.    Agencies participating in the course, and family members, are welcome to send others to sit in on these public parts (where private information is not being discussed).   Prior to the course, we will have a schedule for participants and another schedule for those wishing to sit in and learn.   As the time grows closer we will try to offer free evenings for families and self advocates who have wish to meet the instructors and ask questions.

We’ve participated before in offering this by partnering with other agencies and would be glad to do so this time as well.   Please contact aaron@spectrumsociety.org for more information or check our eventbrite registration site http://michaelkendrickoisd2012.eventbrite.com/

To learn more about Dr. Michael Kendrick, visit his website at www.kendrickconsulting.org

“My association with Michael Kendrick began nearly twenty years ago, when advocates from Connecticut became interested in the innovative approaches to human service reform and community development that he was helping to fostering in Western Massachusetts. His initial work with our agency staff involved training, introducing us to the concepts and disciplines of “normalization” (later Social Role Valorization) theory. Soon, however, our Office began to rely on Michael to consult on program design and advocacy strategies. As we responded to legislative mandates and requirements arising from class action lawsuits, Michael guided and facilitated our efforts to develop both legally based, professional advocacy programs and community based, Citizen Advocacy projects for people leaving Connecticut institutions.

Over the years we have asked him to prepare formal studies on questions of organizational structure and strategy, to develop and provide training to community groups and boards, to serve as an expert witness, and to lead discussions amongst our Board and staff members as we periodically re-examine our commitments and priorities. Michael can always be counted on to recognize and penetrate to the heart of the issue; to bring fresh insights and inspiration. His deep understanding of the dynamics of societal change and systems reform, coupled with his awesome intellect, essential goodness and, not least, his wry sense of humour bring unique, authentic and lasting contributions to our common struggles on behalf of people with disabilities and their families.”  James D. McGaughey, Updated Nov 12, 2003

Check out other testimonials here.   

Another friend, who couldn’t speak, would give people his business card.   We started telling people about this idea and in one of the places we spoke, when we went back a year later everyone there had a business card with their name and their photo on it.  Susan talks about how easy these are to make on the computer, and that’s one way.   But there’s a great printing service called MOO that a friend introduced me to, where you can get 100 “mini-cards” for less than $20 (plus shipping).   The really fun thing about this is that you can upload as many photos of yourself as you like, or of things that you like that you want to share, and they’ll divide the numbers of cards by the number of photos so you can get, say, 10 cards with one photo of you, 10 with pictures of your dog, 10 with pictures of your favourite food…  the possibilities are endless  Some people like more serious cards that tell a story about who they are and what they might do for you, if they offer a service.   We use business cards in a couple of our workshops to get people talking about who they are and what they do.    You can check out the MOO service by clicking here.  It could be a great way to bring in the new year, although as of right now they’re still shipping for Christmas delivery.   MOO will also turn your favourite pictures into cards, postcards and stickers.

Christmas is approaching and it seems like a good time to talk about our spending and gift giving habits. Value and values. I personally think people are looking more and more toward social enterprise to provide values-based gift choices. If a consumer can find what they are looking for from a company with a social conscience, why wouldn’t they buy there? Social enterprises benefit community.

Many social enterprises have a three-tiered mission. At Spectrum Press ours are: to make money to enable us to provide real paying jobs to people with diverse abilities, as writers, collaborators and packers/shippers; to support the mission of the non-profit (in our case Spectrum Society); and to do good for the greater community by sharing our knowledge.

I may be biased here, but I feel strongly that Spectrum Press books and products are a great value.

Take Barb Goode’s memoir, The Goode Life, for example. Since the 1970′s Barb has been quietly working towards equal rights for labeled people, and in her mission she has made the world a better place for all of us. Her story is unique and compelling – perhaps one of the most important and inspiring recent works in disability rights literature.

In Patrick McDonagh’s DVD documentary And That is How I got Free of My Isolation, he interviews self-advocate leaders with disabilities about their lives and relationships as they move from segregated to integrated and interdependent lives.

101 Ways to Make Friends is a workbook that has been popular with self advocates, but also with anyone who needs help making friends. Each page is one easy-to-follow way to make friends. With original artwork by Aaron Johannes, it is full of fun and concrete ideas for building networks. It is a great resource for kids, too — many of whom have told us that they like to colour in the drawings while they learn.

If you want to delve more deeply into the 101 Ways to Make Friends, then 101 Ways to Facilitate Making Friends might be just what you are looking for. For teachers of all kinds who want to lead groups in small workshop settings, or who want to help one person to build their personal support network, this manual lays out, in plain language, steps that help move people in the direction of friendship. This educators manual expands on each of the ways to make friends, giving your students and their supporters things to think and talk about, things they can practice together or on their own, and ideas for them to try out in the community.

This Christmas, I urge you to consider giving the gift of friendship and community.

www.spectrumpress.ca

You’ve no doubt seen the recent media coverage about Community Living British Columbia (CLBC).  One issue that’s getting a lot of attention is the question of moving people out of group homes into less costly shared living situations, and whether individuals and families are being included in the decision-making and provided with enough information to make informed choices about their living arrangements.  CLBC has acknowledged that there are problems in the system that need addressing, and while we don’t speak for CLBC or for any other service provider, we can say that we are very proud of Spectrum’s shared living services and our incredible team of caregivers.  We are concerned that shared living as a residential option not be tainted by a few bad examples, and so we’d like to share some of our insights based on the successes we’ve seen over the past decade here at Spectrum.

Spectrum has always believed that people should have a range of options to choose from, and be fully involved in any planning that affects them.   As people’s needs change, and as we’ve gained experience with new ways of supporting people, our services have evolved to become ever more personalized.  In our own lives, most of us will try out a variety of living situations and, according to statistics, we tend to move every 7-10 years throughout our lifespan.  It seems reasonable, then, to expect that people with disabilities will also want to make changes to their living arrangement, especially if they started out in a home that someone else chose for them (as is often the case).  Since 2001, about half of the people in Spectrum’s services have chosen to make changes to their living arrangement.  Many have chosen to move out of staffed homes into a more natural shared living arrangement with a caregiver, couple, family or housemate.  In fact, shared living has become our most popular service offering, and the residential option that people are requesting more than any other when they come to Spectrum.

It’s been a very deliberate and thoughtful process that has brought us down this path.  Done right, shared living provides safety, security, and opportunities for personal growth and development that meet or surpass anything we’ve seen in 25 years of providing residential services to over a hundred individuals and families.  But it has to be done right, and it all hinges on the relationship between the caregiver and the person being supported.

Our friend Lynn, who lives with Sean and Lisa on the Sunshine Coast, is an example of someone who has flourished in shared living.  Lynn came to Spectrum from Woodlands in 1989, moving into a staffed home in East Vancouver where she lived for the next 14 years.  In 2003, Lynn’s overnight support person, Lisa and her husband Sean decided to move to the Sunshine Coast and suggested that Lynn (who everyone agreed would benefit from living in a more rural setting) come with them, and they would become her shared living caregivers.  Over the course of several months, plans were put in place to make this happen, and Lynn eventually moved over to the Sunshine Coast – and she’s never looked back.  It was obvious to everyone from the day she arrived in her new home that she was indeed, home.  The personal attention, flexibility, fewer people coming and going, and most of all Sean and Lisa’s welcoming of Lynn into their lives as part of their family have had a transformative effect.  Lynn is happier and healthier than anyone could have predicted.  At 60, Lynn (who has Down syndrome and limited vision) climbed the Grouse Grind with Sean and Lisa.  She goes swimming at local beaches with her new friends, sits on the patio of her home taking in the panoramic views and sounds of nature, goes for long hikes in the woods – things she loves to do that we were challenged to do with her in the city.  And wherever she goes, she sees people who know her, who are glad to see her, and who would miss her if she wasn’t there.  She’s a valued member of her community.

Through Lynn’s example, and countless others, our shared living services have grown, mostly through word of mouth.  There are many reasons why so many people have chosen this model over traditional staffed residential support, but the most important seems to be the opportunity for building an authentic, reciprocal relationship with a caregiver or family who genuinely want to share their life with the person.  When we get this right, everything else starts to fall into place.  People with long histories of challenging behaviour suddenly start to settle down because they’re living with someone they’ve chosen to live with, who listens to and respects them, in a home that truly feels like home.  People’s health improves, under the watchful eye of a caregiver who knows the person intimately, sees them every day, and can attend to things that might get missed in a group home with a revolving door of staff coming through.

Some would argue that shared living needs more bureaucratic oversight, more regulations, more standardization – as if these are the things that will keep people safe.  The fact is, caring relationships keep people safer than any system ever could.  As a service provider, our focus should be on supporting people to build strong relationships and personal networks, keeping the bureaucracy away from them as much as possible, not adding more bureaucracy to their lives.  That’s not to say we don’t need standards or that we shouldn’t monitor the service – quite the contrary – but it means that our standards and monitoring need to honour and support the relationships that are at the core of the service.

“Many people with developmental disabilities are more vulnerable exactly because they lack opportunities and assistance to make and keep good relationships.  But most current policies and practices ignore these vital relationship issues, and most service dollars are spent on congregating people with developmental disabilities in settings which segregate them.  By suggesting that people could be kept safe and well in settings where strangers can drop in to check on quality of life, current approaches to safety fundamentally misdirect attention away from people’s most important safeguard, the safeguard that most service settings are most likely to discourage or disrupt.”  (John O’Brien and Connie Lyle-O’Brien)

Programs and systems don’t keep people safe.  Relationships keep people safe.

And now, a few fun facts:

• Spectrum started providing shared living as an alternative to staffed residential services in 2003.
• Requests for shared living have increased with each passing year, to the point that we anticipate more people being served in shared living by 2012 than in our traditional staffed residential services.
• Spectrum has only ever operated one group home, the first home we opened back in 1988 (which is actually a duplex, with two self-contained suites).  Everyone else in our residential services lives in their own home or with one other person with a disability, supported by staff, or they are in a shared living arrangement.
• Many of the people in our shared living services have lived in group homes in the past.  None has asked to move back into a group home.
• The rate of caregiver turnover in Spectrum’s shared living services was 9% in 2010, compared to 20% turnover in our staffed residential services.

On behalf of Aaron, Ernie and the rest of Spectrum’s leadership team, I want to express our heart-felt appreciation to all of our shared living caregivers, and to those who support them.

For more information on shared living, click here or follow the links on the Spectrum website, www.spectrumsociety.org

We also spent a couple of great days with Mary Kealy, from County Clare, Ireland, learning first about agency transformation and then together with Erin Holland from PLAN, self advocate leader Barb Goode, a number of self advocates and family members, Susan, Shelley Nessman and myself we spent a wonderful day talking about Right Relationship: support networks, circles of friends, shared living and informed hiring of supports for Community Living at the Centre for Peace.   A wonderful gift was that we ran into Norman Kunc at a dinner and he happened to be free to come spend the day with us – it’s the kind of magic that only comes about in a world café.   It was an interactive day of world cafes, discussions and a panel presentation.   Small groups worked on the kinds of questions that are cropping up around the province – how to keep people safe, how to grow as individuals and agencies, how to keep moving forward.   One of the participants, a self advocate, said that it was the first day that she’d ever spent talking with others about what mattered in her life.   That’s reward enough for us!   We’re considering making this event a quarterly one, a kind of think-tank about relationships and community development for like minded associates.

Earlier this month we went to the demolition of the last building on the old Woodlands’ site – what a powerful day with old and new friends, and powerful self advocate leaders who have worked so hard to bring this about.   B.C. People First members gave out pins that represented a yellow and black ribbon tied together – those who died in institutions and those who continue to live in institutions and institution-like settings.   As we say good-bye to a model that we know was inappropriate and flawed, we can’t help but be concerned about the promotion of the group home model, which we know doesn’t work for everyone.   Check out “A Reflection on Group Homes and Supported Living,” by David Wetherow for an informed look at how life in a group home works.   Wetherow’s breakdown pretty much reflects my own experiences of working in more than a dozen homes for another agency, prior to coming to Spectrum.   Well, actually that anyone spent 58 minutes focused on any one individual, even if it was broken up into bits, didn’t happen that I can remember.   Susan’s written an excellent little article in this e-newsletter about our agency’s experiences with shared living, a model in which we’ve seen huge commitment from caregivers and those who are supported in reciprocal relationships and community building.

With Remembrance Day upon us, it’s hard not to consider those other kinds of warriors, who lived and died in institutions, and those who supported them despite all the guardedness around family and advocate involvement.   Have a peaceful November 11th when many people will join together for 11 minutes of silence for peace – on 11.11.11 at 11.00 o’clock (a.m.).

Aaron