coming together ...to create change

Winter 2009 inside Reflections on 2009 National Action Committee on Family Message from the Leadership and Grassroots Engagement President of NBACL 2 Nancy Armstrong ...... s 2009 draws to a close we can look All of these changes, both internal and Aback, with pride, on the changes that external, were years in the making, Building a Social have been created this year. sometimes even decades. They happened Movement for 3 because of the hard work and persistence Michael Bach . . . . In the spring we all celebrated as Ontario of many people, people who despite closed the last of their large institutions. obstacles and setbacks, always kept the A Parent’s Perspective on This brought to an end the era of vision of what we are trying to achieve Poverty and Intellectual segregating and isolating people behind foremost in their minds and who refused to 4 closed doors. Communities in Ontario give up. People like us — families! Leila Rahem. t.u.ll.a ...... were instead opening up and welcoming all individuals. Celebrate 2009 — reflect on and Maritime Family Kitchen appreciate how far we have come this year. Party – a true success! 5 On December 3rd, International Day of Then, as we embark on 2010, we must . . . . Persons with , the Government make sure our vision remains clear and Around the Country 6 of announced its intention to strong and begin again to address the work ...... Saskatchewan proceed with ratification of the UN that remains to be done. Yellowknife Convention on the Rights of Persons with Disabilities. Just one week later, on Ontario might be institution free but other Upcoming Events 7 International Human Rights Day, the House provinces are not. The UN Convention will ...... of Commons unanimously voted to support be ratified but will it be implemented in a Ten Objectives For ratification. It is expected that this well planned and timely manner? Will the Next Ten Years back ratification will happen early in 2010. Government act on its promise to address . . . . . page the unacceptable poverty level of persons That same week two influential reports with intellectual disabilities? were released, suggesting that there will be movement by the Government of There is much work left to be done to Canada in addressing the issue of poverty create communities, a country and a world for people with disabilities. that accepts and values all individuals with intellectual disabilities and their families. There have been ongoing and positive changes within our federation, including We must continue to come together in approval (at the AGM in October) of greater and greater numbers and make our individual membership in CACL for the first voices heard. This year has proven that time in our history. change is indeed possible! We must not lose the momentum! Members of the National Message from the Action Committee on Family Leadership and President of NBACL Grassroots Engagement Nancy Armstrong – Co-chair, NB Laurie Larson – Co-chair, CACL Nancy Armstrong Julie Smith – PEI President NBACL Shauna Henry – NWT Mimi Kennedy – NWT Kevin McTavish – SK Dawn Gates – MB ust over a year ago when I was so, however humbling, we Rose Flaig – MB asked to take on the role of New approached families, local Beth French – ON JBrunswick’s Family Leader as associations, and community Tara Brinston – Secretariat, NB part of the National Network of partners and asked those tough Family Leaders, I jumped at the questions: What are we doing chance to meet families from right? What can we do better? across the country and share our journeys as parents of children This process now permeates all The Council of with intellectual disabilities. The aspects of our work. Supporting tapestries of our lives, experiences families, family networks, and the Federation and environments have similarities family leadership is integrated into and differences but we are every aspect of our Strategic Plan. The Council of the Federation is inextricably woven together in our We hired our first the forum for bringing the broad absolute determination to create Coordinator, and aim to have one in Community Living Federation more caring, inclusive each of our seven geographic together to work collaboratively communities. regions. It will take many more on advancing the full inclusion small steps, but I am excited as of people with intellectual More recently, I have been asked to families take up again their disabilities and their families. co-chair the National Action position as the driving force of the Committee on Family Leadership organization. It is comprised of CACL and each and Grassroots Engagement. Over of the 13 Provincial/Territorial the summer months, this group has The National Action Committee on Associations for Community developed a work plan that will Family Leadership and Grassroots Living. Through National Action hopefully keep us constantly Engagement is timely for New Committees, members of the renewing ourselves and our family Brunswick, but I am certain it is Council come together to share leadership from coast to coast. timely for all of us across the and exchange knowledge, to Engaging families is an issue we as Federation. I am encouraged by the link existing efforts and to a Federation struggle with, whether national focus on family leadership. identify ways of working we are urban or rural, large or small together to achieve our shared organizations. Now it is my pleasure as a very new 10 point agenda. President of NBACL to get to work At home in New Brunswick, NBACL even more closely with those high began the formal process of a achieving, won’t take no for an Grassroots Engagement Initiative answer, will settle for nothing less over two years ago. In order to than full equality NBACL volunteers better engage families and allies, and staffers who have set the social we first needed to know how we policy bar so high in this province were doing as an organization. And because nothing else will do.

2 Coming Together • Winter 2009 Building a Social Movement for Inclusion

Michael Bach of organizing that that is still newspapers, radio and TV. But the Executive Vice-President of CACL largely rooted in the service reality is we do not yet have the thinking and mission of the 1950s power we need to achieve the and 60s. We are a federation of vision and mission we have set for over 400 local along with ourselves. hen the National Action provincial/territorial ACLs. At the Committee on Family local level, we have a variety of A social movement is a means to WLeadership and Grassroots associations – sometimes small or mobilize this kind of power. It is Engagement, and the National large ACLs – focused primarily on based on the idea that if we work Network of Family Leaders delivering an array of supports and collectively, rather than leave appointed by Provincial/Territorial services. In some communities, we people isolated and alone in their Associations for Community Living are remarkably vibrant local lives, we can tap energy and (PT ACLs) met at our national associations which, along with the mobilize commitment to bring conference in Moncton in October, support of PT ACLs, are showing about transformational and we considered what I think is a how communities can be systemic change. If we now want burning question for us all as we transformed. In other communities that kind of change, we need to approach 2010: How do we our locals are struggling to survive, organize as a social movement. become more effective in pursuing or have closed their doors, and in and achieving our 10-year Agenda? many more ACLs are simply So how do social movements In this article, I share some of my nonexistent. mobilize power to change hearts, reflections on our discussion. minds, communities, public We are realizing that to be more policies? Networks are the new Why isn’t our federation effective effective we need to become much political actors with the power to enough yet to successfully pursue more of a social movement than shape political agendas and bring and achieve our 10-year Agenda? I only a federation of organizations – about change. Global financiers think the primary reason is that our a social movement of family and and media leaders recognize that aim is now different than it was in allied leaders, a grassroots today power – for better or worse – the 1950s and 1960s. Then it was movement engaging self-advocates, is mobilized through networks, and primarily to build a service system families and community members so do effective social change to support children and adults with linked through networks of people movements. intellectual disabilities – and ACL and organizations and in common leadership was extremely cause. What kind of networked social successful in securing resources to movement do we need to pursue do so. However, by the time we got Why organize as a social and achieve our Agenda? One that into the mid 1970s and in particular movement? Because we want makes collective action possible at into the late 1980s and 1990s our power and influence, not as an end all those places where we know vision began to expand as the in itself but to bring about change. change is needed – in the minds human rights revolution began to We want power to change minds and values of Canadians, in hopes take hold in our associations and and change communities. We want and expectations and energy of movement. power to change how teachers families; in schools, workplaces, think and how schools work; how child care centres, in governments, Where are we now? We are inspired employers hire, and run their in the media. We need a networked to make change possible for all, workplaces. We want power to get social movement that engages in and to realize the promise of our voices and stories and town hall meetings, political human rights. But we have a way perspectives into the media – Continued on back page

Coming Together • Winter 2009 3 A Parent’s Perspective on Poverty and

Leila Rahemtulla inability to carry on is equated to embarrassed or guilty as a result of not caring. conversations they have had to have with support or financial Having a family member with an workers. We can never lose sight of intellectual disability usually how deeply personal this issue is means there are costs as well to for families. We must be careful not the family—to careers, home, the to strip away someone’s power—in other family members and life fact, I believe our focus needs to overall. For instance, we as a family help restore it. None of the moved back to Canada when our families, including my own, want son was born so we could offer him pity. That destroys our power. a better life. What happens when What families want is you don’t have the finances to understanding, what they need are recently had the honour of move, the education or work that supports for their family members, participating in a national gives you freedom, what if poverty what they live for is to provide their IPoverty Forum in Vancouver, BC. is already your family’s reality? family members a good life—one Based on the statistics presented Families “do the math” and resign filled with love, dignity and at the conference, a person with an themselves to the fact that if they fulfillment. This requires listening intellectual disability is almost don’t keep care in place, chances without judgment and honouring three times more likely to live are their child will live in poverty. the family and its dignity. below the poverty line when This is the reality for many compared to the general families—they really don’t feel During the panel and the population. The issue of poverty is there are other options. conference I was reminded that also a family affair and I wanted to within each family lives a story, a share some insights from that I know a single mom caring for her lifetime of joy and challenges and perspective. adult child while fighting cancer; ultimately a need to want to make it she has had to try to work to keep work. Families want to engage in a The first important point parents her son’s life managed and it left dialogue that honours families in make clear is that “our children are her little time and energy for her their choices, respects them in their our gifts, not our burdens.” own healing. For another family, financial condition and treats them Speaking for my own family and the cost was a couple’s as individual, unique units that we many others, it is important to relationship. Other families choose all have to take the time to get to remember that although our lower paying jobs or no job at all if know and understand. This work challenges may be great, we love there is not enough flexibility to gives me faith—that we live in a our children unconditionally. Our care for their child. There is a cost society that dares to care, that has children are not our burdens, what to siblings and extended families— the courage to stand up for is missing in their support is the these are the people that may not fundamental human rights for all burden. For many, caring for their get the care or attention they need people and breaks down the adult child is not a choice—it is the or make their own sacrifices as differences between us. When we only option they can fathom. We families try desperately to make it get to that, we start to care about must ask ourselves if it is right that work. These are some of the real each other in a way that can truly the social net has shrunk because costs that need to be included with transform society—and that is the of the assumption families will the financial data—the costs to one thing that gives me hope as I shoulder the care of their child relationships, wellbeing, family life, raise my children. indefinitely. For some, there is a and careers. feeling that loving their children Leila Rahemtulla is a member of the has sometimes been used against There is a vulnerability that is board of BCACL. She and her them—almost like emotional created when you ask a family to husband live in Vancouver where blackmail—when families ask for talk about poverty. Sometimes they are raising their two sons. help, their unwillingness or families feel exposed or

4 Coming Together • Winter 2009 Maritime Family Kitchen Party — a true success!

from education and early learning, aging parents, transition and future planning, and even effective uses of online social networking. Saturday evening’s closing dinner featured Social Development Minister Kelly Lamrock speaking on the impor- tance of diversity and inclusion in all aspects of our community. For those conference participants who weren’t too stuffed full of the traditional East Coast fare, La Famille Arseneault wrapped up the night by providing plenty of opportunity to play the spoons, tap your toes, and brush up on your French!

Being a true family conference, we he weekend of October 23- Bernard Lord, and the honorary did not forget about the children. 24th was one to remember at president of NBACL, former While parents were enjoying the Tthe Ramada Plaza Crystal Fredericton MP Andy Scott. Though conference sessions, the children Palace in Dieppe, New Brunswick, from different political were also having lots of fun. thanks to the hundreds of families, backgrounds, all three agreed and Childcare opportunities included self-advocates and friends from spoke on the importance of trips to the indoor theme park and across the country who came community living values and the an offsite Sibshop, which provided together to share and learn at the principles that must be upheld and an opportunity for young children to 2009 National Family Conference, fought for in order to become a get together, have fun, and share co-hosted by NBACL and CACL. The truly inclusive society. some of their thoughts and conference programme was full experiences on having a sibling with with workshops, guest panels, Former Premier Lord pointed out an intellectual disability. speeches, dinner, dancing, and that community living principles amusement park rides, and all and ideals are not only important, NBACL and CACL would like to thank participants left in full agreement: but are also a defining characteris- their staff and the Conference there was something for everyone! tic here in Canada. Andy Scott Committees for their hard work over reinforced that point, saying, “We the past year. NBACL would also like Eager participants got a jumpstart always hear people say that Canada to thank their generous conference Friday morning with a pre- is a tolerant society, meaning we donors, who sponsored over 50 NB conference workshop hosted by tolerate difference. We don’t just families and self-advocates to Jack Pearpoint, who spoke on tolerate difference. We celebrate it. attend the conference. Most of all, organizational practices and We love it. And we may be the only thank you to the families, self- capacities that improve person- country that really gets it.” advocates and friends who joined us centered work. this past October and made the The conference continued Saturday 2009 National Family Conference a The conference officially opened on with an early morning media panel, true success! See you in Whistler, Friday evening with speeches from and sessions on topics ranging 2010! several distinguished guests including Conservative Leader David Alward, former NB Premier

Coming Together • Winter 2009 5 Around the Country

Saskatchewan

n 2004 the Saskatchewan Association for Community Living Ilaunched an innovative new program – Adopt-an-MLA. Provincial politicians routinely make decisions that can have a major impact on the lives of individuals with disabilities and their families, yet many had no knowledge of the issues or the impact of those decisions. The goal was to connect every MLA with a family in their riding. The MLA would come to the family home for a Cam Broten MLA in discussion with Olivia Dueck cup of coffee and a visit. This gave them an opportunity to meet all opportunity to get to know one transportation needs, community members of the family and to listen another on an informal basis, a supports, or recommendations on to their stories and concerns. This basis of friendship. Mr. Speaker, how things could be improved.” program has been a huge success probably the best way to get to and has certainly raised awareness know someone better is to share a In Saskatchewan, SACL and it’s of our issues within government. It meal together. I know I thoroughly Family Network will continue to gave families the opportunity to enjoyed the conversation at my look for opportunities to reinforce have their voices heard and in fact, table as we filled up on pizza and that connection with our elected as families were empowered through chatted about life. Over the course officials and to ensure that the this process, many are now more of the evening, I heard about the voices of individuals with comfortable contacting their MLAs issues that matter to families — intellectual disabilities and families as issues arise. whether that was about continue to be heard.

On November 4/09, we took this one step further. The SACL Family Yellowknife Association for Community Network hosted an evening event in Regina and invited all MLAs to Living’s Family Networking Group attend. We wanted the MLAs to spend time with families in a fun, — A Parents Perspective social context – to see first hand Submitted by Shauna Henry, families celebrating together and NWT National Network of Family Leaders Member experiencing the joys their children bring to their lives. The turnout of ive years ago our little boy Jack intellectual disability are: fear, MLAs was very good. Everyone was born. A little angel, he had anxiety, overwhelmed and the list enjoyed the entertainment provided Fdark hair, lovely eyes, a perfect goes on. Being from a smaller city by SACL’s Kids on the Block nose and beautiful lips. Our first- in the north, we wondered how on puppeteers and had pizza and cake. born, what a beautiful day it was! earth we would ever be able to do The response from both families and Jack happens to have Down this. How do we do what is best for the politicians was very positive! Syndrome and as parents we had our new bundle of joy? Who is no idea how enriched our lives going to help us? One of the MLAs present that would be from that day on. evening, Cam Broten, spoke in the This is where Yellowknife legislature the next day and made Some feelings that come to mind Association for Community Living the following comments – “It’s an as new parents of a child with an came in — an amazing organization

6 Coming Together • Winter 2009 Upcoming Events

that sat with our family and steered Northwest Territories us in the right direction. One of the Transitions Service Fair – High School to Community initiatives that we learned about and has been invaluable to us, is the The purpose of this event is to help families understand the importance Family Networking group. It’s a of planning for their child’s school to community transition and learn group of parents and caregivers that about resources available to their child upon finishing school. meet once a month. The evening When: Wednesday, March 24, 2010 from 6-8 pm consists of some networking time in Where: École Sir John Franklin School the beginning, usually a guest For more information contact: Yellowknife Association for Community speaker sharing information Living specifically tailored to our needs, Phone: (867) 766-4294 and then more time for networking. E-mail: [email protected] The Association also provides respite workers on site to take care of all of Newfoundland and Labrador our children while the meeting is Summer Institute ongoing. Oh yes, and always plenty Inclusive Education Practice: Effective of coffee, tea and treats!!! Leadership for Schools and Communities When: Sunday, August 1 – Tuesday, August 3, 2010 What is really neat about this group Where: Memorial University of Newfoundland, is how diverse it is. There are those St. John’s NL of us who are fairly new parents and For more information contact: Donna Walbourne, Community Inclusion then there are individuals who have Consultant, Newfoundland & Labrador Association for Community Living been supporting a family member Phone: (709) 722-0790 with a disability for 20-30 years. It is E-mail: [email protected] amazing the amount of knowledge, experience and compassion that actually sits in that room where we Newfoundland & Labrador meet. Very encouraging! Not only Association for does it give families an opportunity Community Living to meet others and increase their social networks, but it also gives British Columbia families time to share, and by sharing we mean the good, the bad 2010 National Family Conference and in between. We as families, for a SAVE THE DATE! change, get to be the “norm”. CACL, BCACL and Family Focus are pleased to host the 2010 national Nobody stares at our family member family conference. or us; we are all the same at these When: October 22 – 24, 2010 meetings, and it definitely reduces Where: Whistler, BC any feelings of isolation we all might More details to follow in the Spring edition of this newsletter. have. My husband, our three children and I look forward to a night out every month with this Family Networking Group and would certainly feel lost without it. I cannot put into words our appreciation to this Association for all its support.

Coming Together • Winter 2009 7 What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal. —Albert Pike

Building a Social Movement for Inclusion Ten Objectives For the (Continued) conventions, and online forums where public dialogue Next Ten Years now takes place.

What kind of collective action are we talking about that • Achieve equality rights and recognition. ‘switches on’ our Agenda to others with power to make change happen – allied professionals, media, • Close institutions and assure a home in the politicians, employers, service providers? Action can community. take many forms – from people forming peer support groups and ‘networking’ by talking and listening to • Secure child rights and needed supports. each other, by creating online communities and learning/knowledge networks, to organizing • Ensure families have needed supports. partnerships and collective engagement with the child care or education system, to cultural production. It can • Achieve inclusive education. be mass letter-writing campaigns, it can be protests, it can be coalitions (like End Exclusion), it can be public • Secure the right and access to disability awareness campaigns. We need multiple forms of supports. action – and local to global networks can make it happen. • Establish safe and inclusive communities. Are we positioned to support and help sustain a • Eradicate poverty for people with growing family-led social justice movement? There are intellectual disabilities and their families. growing family networks, but they are largely disconnected from one another if we take a national • Achieve employment equality. view. There are vast numbers of self-advocates and families who are not connected, don’t know about us, • Make a global impact on inclusion. and many young families don’t want to join the local base of our organization – that’s not universally the case, but I think we all recognize it is a major issue. Our Ten-Year Agenda has ten objectives to guide how There are many communities where local ACLs are not we’ll realize our vision: communities, a country, and a positioned or mandated or have the capacity to support world where diversity includes. the broader family movement. Join us in making this dream become true. I think it is time that as a national federation we look Visit www.cacl.ca collectively at the capacity of our local infrastructure and ACLs and ask if we are tooled up and organized to support a growing family movement – with information about what families want, support to help organize, and technologies and human resources to assist families link up and mobilize for change. This is about deciding who we are as a national federation in 2010, what our Agenda is, and how we organize ourselves to support a social movement that can achieve that agenda. Over fifty years ago, families knew the answer lay in the power of networking. Let’s return to those This project is funded in part by the Government of Canada's roots, and mobilize the power of those ideas to respond Social Development Partnerships Program – Disability component, Human Resources and Skills Development Canada. The opinions to the vision and challenges of today. and interpretations in this publication are those of the author and do not necessarily reflect those of the Government of Canada.