Disability Leadership

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The above photo, left to right, Bruce Bonyhady, Chair, Australian National Disability Insurance Agency, Andria Spindel, President and CEO, March of Dimes Canada, Carla Qualtrough, Minister of Sport and Persons with Disabilities, Canada – Sydney, March 2, 2017

Disability Leadership is many things, including personal empowerment for individuals who have a disability, sector innovation by service providers who keep abreast of or ahead of new ideas and challenges, and community or cohort leadership which engages a group of people with and without disabilities to help build greater capacity of those with lived experience and a society that values everyone and is inclusive of people who have a disability. So, I have been reflecting on how well March of Dimes, our team and I do in building “disability leadership” in all its manifestations.

During the week of February 27th  to March 4th, I had a unique opportunity to participate in the International Initiative on Disability Leadership (IIDL) in Sydney, Australia, and to see how people with lived experience took the initiative to build a national campaign for a nationally funded and delivered disability insurance scheme. I also heard from disability policy leaders in government, the NGO sector and the disability advocacy movement, about their various roles and relationships. It very much reminded me of the many ways in which March of Dimes Canada has contributed over many decades to improving the quality of life for people with disabilities in Canada.

From the earliest years in which we employed the highest proportion of people with lived experience, when at least one third of our board of directors were people with lived experience, we have continuously innovated to deliver new or improved services, and to have input from those with lived experience. I was reminded that March of Dimes was instrumental in getting people with disabilities included as a class or category for which human rights are guaranteed in our provincial and federal Human Rights Acts, also in the Canadian Charter of Rights and Freedoms. March of Dimes was providing leadership training to people with lived experience when in 1981 we received a federal grant to go into schools across Ontario and talk about disability/ability and accessibility, and we hired 15 people to deliver this program. We reached over 600,000 students in 3 years. We funded and supported many self- help organizations, enabling them to build their capacity, to represent people with disabilities.

March of Dimes invests hundreds of thousands of dollars annually in staff development, helping to build a professional team dedicated to and leading in the delivery of quality community support services, always encouraging forward thinking, as well as creative and challenging developments for providing a quality of life to those who have a disability. Our cohort leaders include the many peer support chapters, the engineers and designers in DesignAbility chapters, the March of Dimes Canada Committee volunteers, the partners in collaboratives that we support that give rise to new programs.

I think history will tell that March of Dimes made a huge impact in disability leadership, and will continue to do so. I invite staff, consumers, volunteers, and other readers to comment.

 

 

Another Way I support March of Dimes

Diane Spindel and Andria Spindel

The photo was taken over 9 years ago; my mother passed away on December 25th, 2007. She and I were very close and I still miss her, and most especially when I am with my young adult children and think about all the pleasure they give me, and how much I want to share it with their grandmother. It has caused me to reflect on the many things I want to share, some of which is incorporated in this article I wrote a few years ago. The article was shared with our donors and will be part of our Legacy Newsletter this month. I am sharing it here as another way to bring my mother and her journey into my memory.

“My own mother became disabled when I was only five years old. Perhaps that, more than anything else, has helped me personally understand, in a most profound way, the importance of individuals maintaining their dignity and independence, no matter what the disability. It’s a core value that instructs our every decision here at March of Dimes Canada. This childhood experience deeply impacted my life choices. At age 34, having just started working at March of Dimes Canada, I took the unusual step at that time of making a Planned Gift to 4 charities through the purchase of a life insurance policy, designating the charities as beneficiaries. I understood that it was an inexpensive way for a young person like myself to make a significant difference, to give back in a meaningful way, even though it would only materialize decades later. For me, making a Planned Gift was also a way to honour several of the most important pillars of my life, to formalize these commitments: community, international development, Jewish life, and the inclusion of people with disabilities. It has been my privilege to work at March of Dimes Canada for almost 35 years. While I could not have known at 34, when I purchased my policy, that it would be such a long relationship, I did already know that working with and for people with disabilities was my calling.

Making a Planned Gift to March of Dimes Canada made so much sense to me. During my time here, I have seen the life transformations that come from the services our organization provides to people of all ages and stages of disability. I have met with thousands of people whose lives we have touched, helped to establish programs that address their needs, and seen how advocacy enables change. I have worked with a remarkable team at March of Dimes and know their commitment is a major contributor to the success of the services we provide to the community we serve. I believe in the future of March of Dimes Canada, in the future of an inclusive society and in the benefits of planning now to ensure tomorrow’s important work — and hope that others share these values.

If you have not yet done so, I would encourage everyone to check with a financial advisor to learn more about the benefits of a Planned Gift. In doing so, it’s my sincere hope that you will consider including March of Dimes Canada in your plans. Based on my personal experience, I’m convinced that you will find Planned Giving to be a most rewarding decision.”

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.

Time flies when one is having a good time!

Since December, I have not written in my blog but I have been capturing stories and giving a lot of thought to what I would like to share. To start I want to tell everyone about my amazing volunteer experience, taken during my vacation in the month of January, when I packed medical supplies along with 28 other volunteers, aged 17-82, from 6 countries. We know the supplies will be used not only to keep the country’s nationals alive if injured, but will also be used around the world to help people affected by natural disasters and emergency situations. We were given valuable lessons in teamwork and fellowship, as well as culture and military roles and responsibilities, international affairs, and local politics.

In February, I returned to a full schedule of events and activities, including budget preparation, completion of a Five-Year Strategic Plan, planning a March break weekend for kids in Nova Scotia featuring Conductive Education, participating at the Voluntary Sector Reporting Awards Luncheon, and a meeting of the Canada California Business Council. This was followed in March by the Celebrity Golf Tournament in Palm Springs, California, selection of the 2012 Jonas Salk Award recipients, and planning for the 2013 Ability and Beyond Gala, as well as implementing the March Break camp in Nova Scotia, working with students from George  Brown College who conducted a research project on a business concept for March of Dimes, planning and executing the March Board of Directors Meeting, and planning more events for both fundraising and programs. In April, 2013, we launched a new transitions program for young people with disabilities who are seeking support from the adult service sector as they navigate their way to greater independence.

In March, we began a conversation with Holland Bloorview Childrens’ Rehab Centre on a model of supportive housing for long term residents who are youth aged 18-30, needing to move to a community-based setting. The solution was possible through a new partnership that March of Dimes has with Reena, a community agency serving people with intellectual disabilities. Reena has developed a gorgeous new, fully accessible, rent geared to income, apartment building in the town of Richmond Hill. March of Dimes has arranged to serve people with physical disabilities in the building who require attendant care.  Also in March, we hosted a delegation from Gansu Disabled Persons’ Federation, representing the entire province of Gansu in China, who came to us to discuss programs and policies that facilitate independence for people with disabilities. I also put in my six-hour shift at our booth at the annual National Home Show in Toronto and spent a day in London, Ontario speaking at a conference we delivered called “Living With a Disability”,  followed that evening by Rock for Dimes London, a signature battle of the bands fundraising event. The latter was a great success.

All to say that a month in my position carries with it great opportunities to work in all aspects of the organization, from coast-to-coast, in fundraising, programs, governance, administration, public relations, and more.

The lessons learned and results achieved over these few first months of 2013 include:

Volunteering at any age is a great way to see the world, and make a difference. My volunteering in the Israel Defence Force confirmed that this army serves many humanitarian causes world wide, and shares its medical knowledge and conviction that human life is sacred.

The Annual budget and Five-Year Strategic Plan rededicates March of Dimes to the “Lifespan of Community Living for People with Physical Disabilities”. The Plan was adopted by the Board and will now be shared across the organization with all staff, and a summary will be produced and posted for all readers and supporters. Budget 2013-14 is the first year of the Plan. Check back  later to read the Five-Year plan.

March of Dimes Canada won the Voluntary Sector Reporting Award for financial transparency for a large Canadian organization, headquartered in Ontario. Read the story.

The Canada California Business Council organized its third annual Celebrity Golf Tournament. March of Dimes Canada, through our American affiliate was one of the designated charity beneficiaries. We were partnered this year with procon.org which is a unique American charity that teaches critical thinking on major issues of the day. This new tri-partnership means we will also benefit from a new tournament to be held in Los Angeles on October 21st, 2013. Read about the 2nd annual CCBC Celebrity Golf Tournament.

March Break Conductive Education Camp was a huge success for the nine kids who attended and a unique photo publication was produced documenting the activities of the kids. Parents and funders are all excited about the program and it is expected to be repeated and perhaps replicated in other communities.

Two award recipients were chosen this year for the Jonas Salk Award for Scientific Excellence, and both will be celebrated at the upcoming Ability and Beyond Gala Dinner, June 13, 2013, at the InterContinental Centre. Tickets are available online and are already 50% sold. The event is sponsored by Bell Canada and features comedian, actor and author, Alan Thicke. For more information go to www.marchofdimes.ca/gala

The business feasibility study completed by George Brown College students will not result in a new business but in an ongoing relationship with the College which expects to place more students with us this fall as we actively pursue other revenue generating ideas. The Centre for Business is interested in our entrepreneurial spirit.

The new transitions program in Toronto, called L.I.F.E. was successfully launched with private funding from TD Bank. It embraces a new formal relationship with Outward Bound and March of Dimes. Follow this link for more information or to register.

A partnership with Reena and Bloorview Kids Rehab, along with support from two Local Health Integration Networks, the Community Care Access Center and West Park Hospital, has resulted in a plan to move at least three long-term severely disabled young people to a new home in the community where we anticipate they will enjoy living outside the hospital environment, using community services, making new friends, and learning new skills. We will continue to work in this collaboration as we consider other models of care for people who have more complex needs. Watch for more stories when we move tenants to this residence.

Our dialogue with Gansu Federation representatives was lively and enlightening. The problems that a very populous country faces which is just beginning to grapple with disability as a social construct, as an area for social policy, as a reason to design new environments and to use new technologies, is awesome. We were thrilled to learn of the eagerness of the local and regional, government supported Federation to address issues, in this otherwise, poorly resourced part of the country. You can see photos of our new Chinese friends on our Gansu Disabled Persons’ Federation Visit Facebook photo album.

Our booth at the annual National Home Show in Toronto was sponsored by our partner, HME Mobility Services and featured many wonderful pieces of equipment that they can provide to make a home accessible. Organized by our Marketing and Communications Department, the 10 day event brings out many head office staff and a few volunteers to speak with a large public gathering interested in home design, appliances, gadgets and home improvement programs. Among others, we feature our Home and Vehicle Modification Program. See images of the show on our MODC National Home Show Facebook photo album.

Living with a Disability Day is now a modular program that we can bring to any community in Canada, and have done so in Peterborough, Calgary, Vancouver, Saskatoon, Fredericton, and Moncton to name a few. There will be many more this calendar year so visit our Events page often for updates. If you or someone you know was recently disabled, consider registering for the event when we come to your city. Learn about resources available, ways to cope, government benefits and entitlements, groups to join and much more. These seminars are sponsored by local companies and feature local “stars”. If you wish to sponsor one, contact Gemma Woticky, Education and Health Promoter, March of Dimes Canada, at gwoticky@marchofdimes.ca.

Last, but not least, we held a very financially successful, and fun Rock for Dimes London, and photos can be seen on our Pennzoil Presents Rock for Dimes London Facebook Photo Album. This event is presented nationally by Pennzoil and co-sponsored by Long and McQuade and AMG Medical. Local sponsors are being sought for upcoming Rock for Dimes events already scheduled, so for the one nearest you, go to www.rockfordimes.ca.

The Rock for Dimes fundraisers, along with Walk ‘n’ Roll, Ability & Beyond Gala, and many more activities help support our vital and innovative programs for people with disabilities. We are always available to speak about new ideas and to partner with established organizations or corporations that want to add value to their events.

The list of initiatives and activities for the next few months is as long as the above, so I will defer writing any more for now, and wish you all a  Happy Spring.

Andria

What might each of us give up?

What are we willing to give up, in order to have a safer community,  to make improvements in the lives of others less fortunate, or to ensure clean drinking water for years to come, or  maybe to ensure our cultural values as Canadians remain entrenched or enshrined? These are some of the questions Canadians might ask  because everything is not affordable or achievable with a tick of a ballot. Having just voted federally and with  an Ontario election in the offing this year, do people really think that a vote will bring about all the solutions? My contention is that no one party has all the answers, and no one party is all right or all wrong. We are all, citizens and residents alike, building a society. Everyone’s contribution counts, and sometimes it means giving up something in order to get something. On a societal scale, it might be time to consider what we really need or want and how much we will “give up” to get it, rather than how hard we will demand it.

At March of Dimes Canada we value all manifestations of accessibility for people with disabilities and equitable opportunity. We place value on  people, regardless of their individual abilities. It sometimes means we have to rethink how things are to be done to ensure access, choosing only physical locations that do not have barriers, revamping material to be more accessible for  some readers, being very courteous to assist others, giving people more time to complete a task, redesigning activities for those less physically capable. Our work always includes asking questions about how things might be done by someone with a disability. Thus we were involved in the Toronto municipal elections last year when the City tested voting machines that enable people with disabilities to place a vote independently. We provided an accessible polling station and material to help educate first time voters on the process.

Thinking through our priorities as individuals, as communities, as a total society is essential. Can we come to recognizable commonalities of purpose and a vision of our society? None of us have all the answers so I recommend taking the time to discuss questions with all of one’s colleagues, family, friends about what one wants and what one will give up to achieve it. For March of Dimes it is somewhat simple. We want people to create inclusiveness and that sometimes means changing plans, going slowly, listening differently, making accommodations. However, it always means valuing all people, seeing the “ability” and not the “disability.”

Canada 2011 – election, democracy and disability

The federal election campaigning is well underway and all parties are jockeying for position with the Canadian electorate. Most Canadians will see the current national environment as rather “ho hum” with one pundit stating the only issue seems to be whether or not you are in favour of their being an election.

Democracy cannot be taken lightly so it is in everyone’s interest to participate and be informed. People are literally dying in North Africa and the Middle East for the right to have a democracy and a free vote. Some of us forget that our forebears also fought and died for democracy. It is a fragile state of affairs at the best of times and fraught with problems most of the time. But it is, in my view, better than most alternatives.

Voting in and of itself does not make for a democracy. Remember that well informed and educated people have voted in communism, fascism, statism, socialism, imperialism, colonialism, and supported sexism, racism, and other manifestations of barbarism (my term.) So, being an informed electorate is work. Being an engaged citizen is work. Being involved in the democratic process, such that one supports an open, equitable system for all citizens, does require one to be informed and engaged. That all citizens don’t have equal access to information, to services, to the polls is a concern of March of Dimes Canada.

We want to hear about issues that affect our most vulnerable citizens, people with disabilities, frail elderly people, those living below the poverty line (which is over % of people with disabilities.) Here are some of the positive measures that were announced in the federal budget that failed to get approval in the federal parliament:

  • Family tax credit of $2,000 to commence 2012
  • Medical expense tax credit to be increased
  • Top up of GIS for low income seniors

Are these policies that you support? What other policies would you like to see in the next budget? What are the policies that you would ask the candidates to address. Staff at March of Dimes will sort through your comments and share the feedback and over the next few weeks we will elaborate on issues that we think are of prime importance to our constituency.