Nothing About Us Without Us

Andria Spindel and Steven Christianson

Andria Spindel and Steven Christianson, March of Dimes Canada

“Nothing About Us Without Us”

This phrase is not new, but it is imbued with more power now than when I first heard it expressed in the 70s by people with disabilities who were advocating for inclusion.  In fact, by the mid-80s self-help and advocacy groups all over North America were demanding it.  I was there when the disability movement was founded.  I have often repeated that mantra when talking about policy development, services, research and support for people with disabilities (PWDs) by PWDs.  Sometimes I shudder that I’m at the helm of a very large NGO, and our credibility might be challenged because I’m a TAB (temporarily able-bodied) person.

Last week, I saw the political power of what’s become a worldwide movement, supported by the United Nations and States Parties from over 150 countries.  Along with two colleagues, I attended the 7th Session at the UN on the Convention on the Rights of Persons with Disabilities (CRDP), and the many side events organized by NGOs and various permanent country missions to the UN.  It was well coordinated, very colorful (by people and dress), intriguing and informative (in 7 spoken languages, several signed languages and simultaneous captioning).  It was my first visit to the UN, but not my last as March of Dimes Canada successfully applied for and was granted accreditation, enabling us to participate at future UN meetings on the CRDP.

To read about some of the important conference content, and a description of the process, I refer you to the UN site http://www.un.org/disabilities/index.asp  and to the upcoming issue of the Advocate, MODCs corporate e-zine on social policy and advocacy.  Our National Manager of Government Relations and Advocacy will publish this with photos shortly, so check back at www.marchofdimes.ca/EN/advocacy/Pages/Advocacy.aspx.

Here are some of the highlights from my perspective:

Penny Hartin, President and CEO, World Blind Union and Andria Spindel, CEO, March of Dimes Canada

Penny Hartin, President and CEO, World Blind Union and Andria Spindel, CEO, March of Dimes Canada

The centrepiece of the General Assembly of States Parties includes only those governments that have ratified the CRDP.  Canada is included, but has not ratified all of the subsequent amendments, especially one on substitute decision-making Article 12(4) and Article 33(2) that relates to a federal role that would be hard for our federated country to implement.  On day one of the conference, six more countries were recognized as having recently ratified the Convention, for a total of 147 country ratifications and 158 signatories; on the optional protocol: 82 ratified and 92 signatories.

The primary purpose of the UN meeting was to receive reports and recommendations with regard to the implementation of CRPD, to hold national governments accountable by having them present their progress reports.  While filing of reports is mandatory; Canada was two years late in reporting.  Of course many countries fall short of meeting all aspects of the Convention, many lack the resources to do so.

The side events, all open to registered participants, included panels, key speakers, films and sponsored social events.  There was a feast of activities to choose from, so we three mostly split up to cover as much ground as possible.

Civil society is crucial in not only monitoring implementation, but in strongly advocating within each country, a role March of Dimes has played in Canada for many decades.  Civil society actively identifies problems, and generally also the solutions.  The parallel NGO conference emphasized collaboration among parties at all levels, especially the need to work with Disabled Persons Organizations (DPOs).  The importance of collaboration was brilliantly explained in a session presenting research out of the US on the concept of “Collaboratory” relationships which test and develop models for change i.e. the “living lab”.  I personally loved the concept as I’ve often portrayed MODC as a potential living lab for faculty and students of colleges and universities.  We offer over a dozen unique programs; we develop, refine, redefine, evaluate, recreate services all the time, serving thousands of PWDs.  We can offer access to a test environment, be it as control group or to unique individuals. Researchers might partner with MODC on new initiatives to investigate their benefits.
photo 5Various sessions described the hardship and the horrors experienced by people with disabilities in various societies.  These included, but were not limited to, poor or no education and high unemployment, but also abuse, forced sex or forced marriage, neglect and lack of health services, abandonment and inappropriate institutionalization. Cruelty was described that was sickening.  But even where there is consideration of PWDs, the gap in resource allocation is significant.  The case was made that there must be an equitable allocation of resources to include PWDs even when resources are scarce.

The most marginalized people in the world are those who are most vulnerable, people with disabilities, women and children.  So a disabled woman in Zambia, Afghanistan or India might be forcibly raped, infected with HIV, abandoned by her family, left with a child or two to feed, be unskilled, unemployed and have no civil rights.  Eight percent (80%) of people with disabilities live in the developing countries.  Poverty often equates to disability.

I learned much more, but will digest the information and offer more in another blog.  My head is full of information, but my heart is heavy, and seeking to distill solutions.  Of one thing I’m very sure.  Canada, the USA and much of Europe have come a long way since the 70s and we can celebrate the achievements, but PWDs are still overly unemployed, less well educated, having lower incomes, compete for scarce resources, experience greater health problems, and are often discriminated against.  So I don’t think we’ve hit the finish line yet.

About modcpresident
I grew up in Calgary, where I completed a BA at the University of Calgary, then travelled and taught in Kenya and the Canadian Arctic during the heyday of Trudeaumania, hippie travel and social experimentation. I settled in Vancouver to complete a Master of Social Work degree at the University of British Columbia, and stayed another 8 years. After graduating I was a Social Planner and eventually became the Executive Director of the Social Planning and Research Council of BC. Ontario March of Dimes recruited me in 1981, the International Year of Disabled Persons and the 30th anniversary of the agency. It has grown from a budget of $5m in '81 to $100m in 2010. Services have expanded drafmatically. We incorporated a non profit housing corporation in 1992 and a national charity in 2001, and since 2006 the latter has operated as March of Dimes Canada. We own and operate several properties that provide accommodation and independent living services to 77 people in 4 municipalities and will add another property this year. Two other exciting non profit entities have been incorporated in my 30 years (yes, it has been 30 years!) and we expect to hold our first fundraiser in the US this year and to initiate our first service south of the border also. My role as President and CEO continues to be that of creating a vision, fulfilling the mission and developing strategic plans to meet an increasing demand for services from people with disabilities and their caregivers. This is achieved through direct service, advocacy and peer programs. On a personal note, I live with my 17 year old daughter and two cats, and enjoy their company a lot. My two adult sons are doing interesting exploration in their own lives and I am intrigued with how they are progressing. In my spare time, I have various volunteer roles on several non profit boards and committees, and enjoy creating programs for building awareness of diversity and disability. I think it has become true for me that youth is, while not "wasted on the young," something that I appreciate more with age. Adventures are physically more challenging for me now, so they have to occur in new dimensions.

2 Responses to Nothing About Us Without Us

  1. Bev biderman says:

    Great post.

    Bev

    >

  2. Thank you for the update. I’m thrilled to hear that Canada will be able to particpate in future CRDP meetings. When I attended a UN roundtable on CRDP on behalf of MODC in Ottawa a few years back, I was made aware of how instrumental Canada was in drafting some of the more difficult policies and then quickly disappointed to hear that Canada would not be able to continue contributing because we had not ratified the CRDP. This is fabulous news!

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