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CACL President Laurie Larson talks about the urgent need for families to reclaim the voice for change and their voice within the federation

CACL President Laurie Larson gave the closing address to Community Living
Ontario's Annual Conference in Toronto on June 1st.

Laurie Larson CACL President 2012

She reviewed the history of our movement, rooted in the dreams and vision of families. In her talk, Laurie called on levels of the federation to return to those roots and join in a national effort to think through how to create services and supports in communities across Canada that make true inclusion a reality.  In concluding her comments, she urged, "With the ability to dream again and the support to create anew once more, families and individuals with intellectual disabilities can and will lead us forward.  We as organizations, at all levels of this federation, need to find ways to support them to do just that."  See below for the full speech:

Good day everyone.

Over the past few days we have heard a number of messages, about our history, about where we find ourselves today, about looking toward the future and the challenges we all face moving forward.

Michael spoke of how this movement and organization got it’s start and how things have evolved and shifted over time.  Barbara Hall spoke about human rights – something that individuals with intellectual disabilities did not have when we started out – that are now guaranteed ‘in law’ but which, more often than not, are not fully recognized or respected in reality.  Kathie Snow spoke about dreams and the importance of dreaming big and focusing on what really matters in life and about making inclusion real.

Peter has stated, and rightly so, that ‘what got us here is not going to get us there’.  So what will get us to where we want and need to be?  To answer that question I believe it is important to look back to why this movement and this organization started, why we created what we did and more importantly ‘who’ created it.   It is in that history that the answer lies to charting our path forward from where we find ourselves today.

Nearly 60 years ago, parents whose sons and daughters had an intellectual disability came together. First they met in small isolated groups, then within larger groups of like-minded families.  From that local level, these families then organized at a provincial and territorial level and ultimately organized at a national level.  From that humble beginning, which at its very core was led and inspired by families, we witness 60 years later, hundreds of local associations, 13 provincial and territorial associations and the national federation called the Canadian Association for Community Living.

These families came together and more importantly stayed together because they individually and collectively needed to reject the status quo. They did not accept the prevailing societal view of their sons and daughters. They did not accept the prevailing view that persons with intellectual disabilities were, by virtue of label or diagnosis, somehow less than human, somehow not entitled to the same human rights as all other Canadians.

These families knew better. They knew then, as we know now, that persons with intellectual disabilities have a right to live in community. They knew that there were possibilities for their sons and daughters beyond that which society at the time indicated.

These families came together because they shared a Vision ­ a vision that endures today. A Vision, simple in its expectation; yet profoundly complex in its achievement. A Vision that their sons and daughters had a right to be raised within the family, a right to live in community, a right and ability to be educated, to be employed, to participate freely
and fully in community and all the activities that occur in community. A vision that as a society there was an obligation to provide the necessary supports and services, within community, that would enable that vision to be realized. These families shared a vision that unequivocally rejected institutionalization of their sons and daughters as a legitimate response to their disability. These families shared a vision that rejected the notion that a label of disability meant a lifetime of isolation and segregation.

Nearly 60 years ago, these families built a federation to help advance that vision and to give strength and volume to their voices.  The voices of families. A federation built and sustained; not as an ends in and of itself, but rather as a vehicle to help realize their vision for their sons and daughters.  That vision I believe is as alive and as
applicable today as it was 60 years ago. As a mom, as President of CACL, it is a vision that I hold today. Based on conversations with hundreds of other moms and dads across this country, it is a vision that I know they also hold. This federation, this movement is a legacy passed to us by previous generations of families; it is a legacy that we have a responsibly to continue, a responsibility to advance.

I want to talk to you today about the urgent need for families to reclaim that voice for change, their voice within this federation.  I want to talk to you today about how we must begin to see the services and supports that we helped create within this federation, in Ontario and elsewhere in this country, not as goals or solutions but merely as vehicles to help us achieve our vision.  These services and supports were created in response to the context that existed many years ago.  The context has changed but often our response, the supports and services we provide, have not changed.

In 1978, Allan Roeher, Executive Director of the national association asked, and I quote, “Why are relatively few young parents involved in a meaningful way in the movement?  Why are many older parents drifting away? Why has the once promising youth movement faded away?  Why do so many see no real value in their locals?”

That was in 1978!  In 2012, 34 years later, we are still asking these same questions.  I would suggest that the answer is not as elusive as what would appear but rather it has been our own unwillingness to listen, accept and take ownership for the answer that keeps us in the perpetual state of asking these questions.

This movement was built on dreams.  Dreams that families had for their sons and daughters, dreams that spurred them to create what did not previously exist.  Kathie spoke yesterday about the importance of dreams.  Dreaming comes quite naturally to families. All parents dream about the future of their sons and daughters pretty much from the moment of conception.  When your child has a disability those dreams are all too often challenged though.

I was at a family workshop a number of years ago and there was an activity that required that the moms dream for their child and create a picture of what that dream would look like.  A number of the moms present were in tears and begged ‘Please don’t make us dream!  Every time we have had a dream it has been trampled.  It is just too painful to do it anymore.’  When families are unsupported, alone and fighting to have their child valued and included and meeting nothing but roadblocks and resistance this is the point that they get to.  They are worn down and give up hope.  They take whatever support they are offered because they no longer dream and believe that they can create or access something better.

When our local associations started, they were places where families could come together, share their dreams, support each other to dream even bigger and work together to advance those dreams.  Can we say that now?  Do we as an organization allow parents to dream?  Do we support them to make their dreams and more importantly, the dreams of their sons and daughters come true?  Or have we become yet another group that imposes limitations and roadblocks and tramples those dreams as unrealistic and unattainable?

Those families who originally started this movement were pioneers and visionaries.  They knew that no one else was prepared to provide what their sons and daughters needed, in their communities, so they set out and made it happen themselves.  They were creative, persistent and highly successful.  They raised funds and not only built the movement and organization but an entire service industry.  They recognized that there was strength in numbers and that they were much more effective and powerful when working together.  It is so important for those of us today to not loose sight of those lessons if we want to keep moving forward and ultimately achieve our vision of truly inclusive communities.

I mentioned earlier that the services and supports that were initially created were in response to the particular context of the time.  So many things have changed in the years since. We have made some really remarkable progress and experienced some profound breakthroughs.  We have learned so much about how to support people.  We now realize that so much more is possible than we ever could have imagined 60 years ago.  Individuals with intellectual disabilities have found their own voices and a self-advocacy movement has joined the family movement in advancing inclusion. Recent years have seen amazing gains in technology that has improved the quality of life for individuals with disabilities.  We see advances in assistive technology give a voice to people who never had one before. We have achieved much that we can be proud of!  With each successful step forward that we have taken, expectations have increased – expectations of both the families and of individuals with intellectual disabilities.  And this is how it should be, social change never stops, it is a constant evolution forward.

And yet, as has already been pointed out, our forward progress has stalled in so many areas and has even started to slide back in others.

Many of the services and supports we make available to today’s families (and their sons and daughters) simply no longer reflect what is possible or what best ensures their full inclusion within community. We are facing increasing risks due to prenatal technologies that serve to identify and eliminate those with disabilities before they are born.  The debates around euthanasia, assisted suicide and pandemic protocols put those with disabilities at grave risk.  The movement to eliminate diversity is moving at a much faster pace than our movement to embrace diversity.  It is a truly scary time. People with intellectual disabilities are also very vulnerable in the face of the economic challenges that aren’t likely going away any time soon.

As far as we have come in our history, we have so much further to go on this journey.  We have to do more. We have to do better. We must ensure that we do not become stagnant; that we do not become complacent in our expectations for our sons and daughters. We must continue to embrace innovation; and to expect that services that support our sons and daughters are equally innovative. We must recognize that services created 50 years ago no longer, for many people, achieve the type of inclusion we and our sons and daughters want. 

So the question of what we do and how we do it needs to be as important as why we do it. We cannot accept services and supports simply because they exist, no matter who provides them. We must create services that will advance the full inclusion of our sons and daughters, services that acknowledge and advance their rights and that enable them to be, and to be seen as, full citizens. We must hold ourselves, and the agencies we helped create, accountable to that standard. Anything less is simply not acceptable.

We are an association built on change and dreams. We must continue to do both.  And while it is true that ‘what we created will not get us there’ it is also true that who got us this far can get us the rest of the way.  With a valued place within this organization families can once again assume their role as agents of change. With the ability to dream again and the support to create anew once more, families and individuals with intellectual disabilities can and will lead us forward.  We as organizations, at all levels of this federation, need to find ways to support them to do just that.