The ONE Billion, one in every 7 people on Planet Earth has a Disability

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Andria Spindel with Javed Abidi. President of Disabled Persons International

The proportion of people with disabilities is greatest in the least developed countries of the world. The poorest of the poor, the most marginalized, and most vulnerable people are those with disabilities. The most exploited and at risk of violence, sexual abuse, neglect, homelessness, and natural disaster, are women and girls with disabilities.  These are the messages supported with documentation and presented this month at the 8th Session of the United Nations Conference of States Parties ( meaning governments) on the Convention on the Rights of Persons with Disabilities (CRPD). I am part of March of Dimes Canada’s delegation to the conference, at which we have accreditation. I am in NY along with two members of our Government Relations Department, and we have split up to cover as many sessions as possible, including those plenaries at which governments report on their actions towards meeting commitments within CRPD, and side events, sponsored by NGOs, UN agencies, governments and academics.

Of course all is not negative, gains are being made, but not equally around the globe. We’ve learned of progressive legislation, embodying principles of the CRPD, such as in Germany and Australia. Canada sponsored a session on collection and use of data, and highlighted the Canadian Disabilities Survey of 2012, which clearly caused envy among representatives from countries which have zero data on disability, yet experience it significantly and have poor planning mechanisms. I was especially proud, as I listened, to realize that the Accessibility for Ontarians with Disabilities Act, now in its 10th year, could be a model for other jurisdictions. But like many who reported, we need vigilance to ensure compliance, we need enforcement to make it work.
The Israeli delegation from the NGO, Beit Issie Shapiro, partnered with big tech giant Google, small tech company Sesame Enable, and the German and Israeli UN Missions, to present exciting advancements in assistive technology. An American partner provided an interesting context as well showing technology that opens doors for inclusion of people with disabilities.
This conference has several overarching themes including, “Nothing About Us Without Us,” “Achieving Cross Sectionality,” and  “Sustainable Development Goals for All People.” The former has been the battle cry since at least 1981 when the first world wide consumer-driven organization was created in Canada, Disabled Persons International. I remember it well. At this event every session repeated this mantra, every session included significant numbers of people with disabilities and communication in various sign languages and with captioning has been available. No longer is it acceptable to plan services, to deliver services or consider the needs of recipients without their direct involvement.

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Andria with Venus Ilagan, CEO of Rehabilitation International

The second theme has been introduced more recently and speaks to the drive to bring marginalized groups together. Since 1981, the voices of different segments of the population with disabilities have built coalitions and alignments, recognizing shared goals for inclusion and access. Now the call is for indigenous people, LGBTQ folks, women’s groups and racialized advocates, to work together with disability advocates to gain rights, to reach full inclusion and equal opportunity.
The last theme is best expressed by the idea that at every table, ie at every issue affecting humankind, let there be a voice for people with disabilities. After all, they are affected too by economic policy, social policy, climate and health care etc. For example,  there are no concerns of women that should not include women with disabilities, from maternal and child care to education, employment and more. So as the United Nations and its many agencies develop their next set of SDGs (Sustainable Development Goals), people with disabilities demand to be included, thus moving our common humanity forward.
My mind is dominated by images of gender-based violence against women and girls with disabilities, which has increased substantially due to war, catastrophic disasters, and poverty. The world has to intervene, conflicts need to cease, risk planning has to improve, governments have to put people first, civil society organizations must cooperate, and people with disabilities need to be empowered. We need recognize the psycho-social implications of disability and the travesty of injustices that contribute to it. The United Nations is a magnificent concept, and gathered at this Conference of States Parties, are powerful allies of those with disabilities, so let’s hope that by this time next year, we’ll hear more about success and achievement and less about the avoidable casualties of man’s inhumanity to man.

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.