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The following is a letter written by Michael Bach, CACL Executive Vice-President.
As I move on from my role as Executive Vice-President at CACL (as of April 16), I want to share a few reflections with my friends and colleagues at CACL and beyond in the disability and human rights movements.
When I took on my responsibilities on January 1st just over 15 years ago, I went into the CACL offices on that New Year’s Day and sat alone trying to anticipate the path ahead. I sat for a long time thinking about how I could best contribute to the community living movement for which I have such deep and abiding respect and admiration. One of my first steps that day was to put up a large almost floor-to-ceiling poster in my office that had the message "Did you know 77% of adults with intellectual disabilities live in poverty" with a large photo of a man sitting alone at his kitchen table. As I sat in the quiet surrounds, staring at the poster, I was humbled by the scale of the task ahead. How could we strengthen a movement to address such pervasive social and economic exclusion? What did we need to do?
The image and the message still haunts me, and I wonder have we moved the marker? I sensed at the time that there were four drivers of change. First we had to strengthen the links in our local-to-provincial/territorial-to-national Association for Community Living as a beacon of hope and core values, a fountain of knowledge about how to make inclusion real, and a mobilizer of change. Second, we needed to figure out our role in supporting and helping build the national family movement that, in its nascent form, gave birth to this federation. Third, we needed to continue and expand the embedding of our vision and values in human rights instruments, law reforms and public policy. Fourth, we needed to grow our capacity to develop visionary community leaders across the country and around the world, people dedicated to transforming the systems they lead – in municipal governments, the labour market, education, health and community services and more.
I am incredibly grateful for the opportunities I have had over the past fifteen years to be part of driving these changes forward, and for the dedication of CACL Board, staff and consultants, our leaders in provincial/territorial associations for community living, and for so many in local ACLs who are working to make inclusion a living reality.
What difference have we made together? On the first driver of change, I think we have strengthened our federation, although there is certainly more to be done. I am excited about our collaborations to design and deliver successful national scale programs to fulfill our federation’s shared mandate. The Ready, Willing & Able initiative is a leading example of what we can do when we work together as a federation. Engaging local-to-national scale employers to lead the way in creating inclusive workplaces and labour markets, hiring people with intellectual disabilities and Autism Spectrum Disorder, the program is exceeding its targets. It truly is starting to make a practical dent in the endemic poverty people with intellectual disabilities. Our Health Matters! and InFocus are other local-to-national initiatives to transform how community systems work. And the current Working Together initiatives being facilitated through IRIS in four pilot communities in different provinces demonstrates again the power of our collaborative approach to addressing poverty, violence and marginalization.
With regard to the change driver of supporting and helping to grow a national family movement, we are still at it. We haven’t yet gotten clear on our respective roles. Over the years we have tried various strategies – seeding family-based initiatives, creating a national network of emergent family leaders, consulting with families across the country to help define our roles. Our most lasting role at the CACL level has been the creating of the Coming Together… to create change newsletter that shares incredible stories of families across the country making a difference in their own communities. So we have made some progress, but this remains an urgent question for CACL. Families are integral to the inclusion journey – in the creation of inclusive families, the building of bridges to the community, by inspiring others and changing perceptions, and by holding our organizations and federation accountable to a vision of full citizenship. But like any other social infrastructure, family capacity, networks and leadership need investment and knitting together. I think we must keep at this task of figuring out CACL’s role in ensuring strong and supported families, as a compliment to the leadership provincial/territorial ACLs and many local associations and family networks already provide.
We have also made some headway on that third driver of change - embedding our values and vision in human rights instruments and law reform. We invested significantly in the negotiations for the UN Convention on the Rights of Persons with Disabilities, adopted in 2006. Our Canadian team, and the knowledge and examples we brought to the negotiating floor of the UN in New York helped make major breakthroughs. We secured recognition of a right to legal capacity and support for decision making (rooted in CACL’s original proposals from its 1991 ‘Alternatives to Guardianship’ Task Force). In addition, the Convention recognizes the integral role of families, a right to inclusive education, to live in the community, to employment equality, and to an adequate standard of living. And we made this remarkable progress because we are not only a national federation. We are also part of Inclusion International, our international federation, which showed such clarity of purpose and vision through the negotiations for the UN Convention and continues to do so through its global leadership today.
I am troubled, however, that what we thought would be a pinnacle achievement and that would drive inclusion forward, now often feels more like rhetoric in the Canadian context than an urgent and compelling blueprint for action by government, private and public sector leaders. Inclusive education remains far from realized, and is going backwards in many communities. The poverty rate is unchanged overall. While our Ready, Willing and Able initiative is hugely successful, employment rates overall still hover around only 30%. Social assistance is the life path for far too many adults. The Law Commission of Ontario has just come out with a report completely rejecting the United Nation’s interpretation of the right to legal capacity, and the requirement to ensure access to supported decision making. Instead, the Law Commission insists that certain cognitive and mental disabilities are essential in order to have legal capacity protected and that guardianship must stay in place for those who don’t meet those tests.
On another issue, we fought hard in the courts to get a recognition that the right to life and dignity of people with disabilities required that assisted suicide remain criminalized. Yet we lost that battle too. ‘Medical Aid in Dying’ is now part of our legal landscape, and already there are immense pressures to open up access beyond those who are dying, to those who are living with cognitive disabilities and mental health difficulties. Our treasured ‘right to live in the community’ recognized in Article 19 of the UN Convention is consistently violated in Canada, every time a young person is placed in a nursing home, or people don’t get access to the affordable housing and supports they need to belong.
All of this, and there are more examples, remind us that we are in a constant struggle, a contest with the state in Canada, and with private sector and community actors to move our vision and values into reality. This doesn’t mean these actors are ‘enemies’ to our vision. Some may be. But for the most part those who continue to put up roadblocks, or are slow to change, are still captivated by exclusionary notions of what it means to be human, ideas that equate humanity with certain physical and cognitive abilities. Our starting point is different. Human interdependence, frailty, unique developmental pathways and possibilities, vulnerability and dependence are where we begin. We will never build inclusive communities if we don’t start here.
This brings me to the fourth driver of change I committed to working on when I started with CACL fifteen years ago – supporting and investing in visionary community leadership to make inclusion and belonging real, the stuff of daily life. Because of the contests and roadblocks we still face – in 2017! – from the likes of the Law Commission of Ontario and others, I think I am coming to a new understanding of what investment in community inclusion involves. Often we think of the state or government, and our democracy, as one and the same thing. That the state is the space in which our democracy is made real, is expressed, and lives. Certainly, in part. But if the state remains a contestant with us in the struggle to advance full inclusion and belonging, then this can’t be the whole story. We need to rethink this equation I think. In fact, democracy is rooted in classical Greece’s idea of the ‘demos’ or ‘the people’. And that means community is the home of democracy. It is in and from community that we call on the state, employers, educators, the legal profession and the law commissions, the health professions – to account to us, the people, and to our shared vision of belonging.
As we look the world over at some governments, political parties and narrow civil society interests arrogantly rejecting the tens of millions of people forcibly removed from their homes and communities, now a displaced population of over 65 million people, we must recognize that the forces of exclusion are very much alive. In Canada, we are still in sorrow over the killings in the mosque in Quebec City. These forces of exclusion make ‘alien’ those who speak a different language than the dominant norm, who look or dress or move differently, whose faith and gods are more diverse, who think and value in unique ways. In our movement, we know only too well how these forces work. We have seen it in the scale of poverty, violence, and denied access to education, health care and justice encountered every single day by people with intellectual disabilities and their families.
As we make of communities the space from which we call on others to account, to invest, to assist, to lead, to join us, I think it is critically important to align with those who also know the experience and realities of exclusion. Displaced refugees and migrants, Indigenous persons in Canada, people with other disabilities, the LGBTQ community are all essential allies in the long walk to democratic belonging and participation. If we are truly to make inclusive communities, as the seat and home of democratic life, we must do it together.
The ACL movement has immense resources, knowledge and leadership to advance this work of inclusive democratic development. More than ever we must demonstrate what inclusion and belonging look like in every domain of life. We must challenge those outmoded stereotypes and practice inclusion and the recognition of full citizenship in our local communities. If the state, law commissions and other actors aren’t fully up to the job yet, then we, the people, can make rights real in how we organize daily life in local communities. We can confer recognition and dignity and belonging on all those who are frail and vulnerable, and who strive to belong in all their unique possibilities. Deepening and extending our local-to-national capacity will be essential in this work so that we can build the social infrastructure for belonging and inclusion that is missing or still too weak in many communities across the country.
As I go onto my next role at IRIS, I leave CACL full of confidence and hope in the leadership that comes next. Krista Carr takes over as Executive Vice-President of CACL on April 17. Having known Krista for these past many years, and having had the opportunity to see her in action, I know that CACL’s national organization is in very good hands indeed. Krista brings a singular and unparalleled ability to translate her passionate and dedicated commitment to our values into visionary pragmatism. Where do we want to get to? How do we get there? What do we need to build to get the job done? I have no doubt CACL will benefit immensely from her stellar leadership.
And so, to a treasured home at CACL, my bittersweet goodbyes and heartfelt thank you for this amazing opportunity, for your support in finding a path forward and for all our shared efforts and adventures. As I move on to IRIS to support in new ways our collective work of building a truly inclusive democracy, where all voices are heard, valued and equally respected, I remain optimistic about the possibilities. I continue to be inspired by all of you I walk this journey with, alive to the immense challenges and contests ahead, and dedicated to doing what I can to help make a difference.
In solidarity and with my very best wishes to CACL,
Do you have a personal story to share? What about members of your family or your friends? To share your views, ideas and reflections contact firstname.lastname@example.org.