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.

What is a Skate Horse?

Andria on skate horse (1)Ever wondered how an adult would learn to skate, especially a non athletic type? Or how a new immigrant to Canada from a warm climate might feel on skates? Or what of the person who developed a fear of falling after a crash on the ice, or the fear and lack of balance for someone post stroke or with some physical disability?

I imagine that most people assume an individual with a disability is simply not going to skate, and either there are other easier physical pursuits or precautionary positions, ie don’t take a risk because you can hurt yourself! Indeed, falling on the ice is not fun after about age 10 when one is out of a cushy bum warming snowsuit.

Well, should those among us who want to learn to skate, but are afraid, or a young child with mild Cerebral Palsy, give up all thoughts of skating or, should one consider using a device developed specifically to give confidence and balance on the ice? Imagine what it might mean to a small child to hold onto a safe and secure device, and still slide easily on the ice, enjoying a familiar Canadian past time, joining with family and friends, giggling with delight and being assured of no miserable mishaps. I guess if Paralympians can add artificial limbs that look like skis and blind skiers can have personal guides, a young child can fairly use a Skate Horse, and participate fully in the simple recreational activity.

DSC_0213 (1)Developed by DesignAbility Coordinator, Elaine Darling of  March of Dimes Canada, the Skate Horse testing was completed last year and this year over 20 have been acquired by the City of Toronto Recreation Department and on March 10, 2014, MARCH OF DIMES DAY,  it was launched. This simple tubular device, light weight and durable, with adjustable seat and handle bars, acts like a sliding walker, allowing the user to hold fast, sit back and rest when necessary, maintain equalibrium with one’s legs. and to stop on ice easily without hitting ground.  The device is available in two sizes for now, and can be adjusted, and in the photos below you can see the enormous thrill and delight on Lilly Sonnefeld’s face as she heads around the ice rink at Leaside Memorial Arena with two skate companions. Yours truly tested an adult size Skate Horse and found it to be great fun, and possibly  a way to keep skating in my own older years, as I have never been all that good at it.

I donned my trusty but rusty grade 9 skates, and enthusiastically called out every head office employee to celebrate the launch of the Skate Horse, as well as the annual March of Dimes campaign. We headed over to the gorgeous, newly opened accessible arena in our neighborhood. How great our Neighborhood rink has a ramped entrance to the ice, accessible change rooms, washrooms and viewing area, giving us another excuse to party!

While not that many employees ventured onto the ice, those who did experienced a new way to celebrate our annual staff campaign in support of March of a Dimes. All, viewers and skaters, enjoyed hit chocolate and treats supplied by a local business. All, watched with enthusiasm as four youngsters from our Conductive Education program took the adventurous challenge to don skates and ride the Skate Horse. All succeeded, standing tall, gliding easily, comfortable and secure on the newest device to emanate from our creative volunteer DesignAbility program. Congratulations to Lilly, Jack, Keenan and Jaiden. Thanks to staff and volunteers and to parents who out their trust in a March of Dimes. A thrill for all.

 

Something Very Special

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Andria Spindel, Hon LLD, giving her convocation speech

Life is full of surprises and when they are good surprises, like birthday parties, new babies, chocolate gifts, kindness in unexpected places, or a bright day after days of rain, one really welcomes them and wants to share them. How do I share the wonderful surprise that awaited me when I returned from a vacation,  when it was a letter from the President of the University of Guelph, advising I had been nominated for an Honorary Doctorate of Law? All I could say was “Wow, really?”  I couldn’t even imagine where the nomination had come from nor why. I was to learn that a board member of Ontario March of Dimes Non Profit Housing Corporation had recommended my nomination, supported by several other people. I was invited to give the Convocation address at the graduation of the Business and Psychology students at Guelph Humber on June 17th and would I accept?

The recognition was exquisite, making me feel very honoured indeed. The task of addressing 500 students was awesome and challenging. How does one add inspiration to an event that is generally inspiring in its ceremony, in the presence of many gowned elite and educated, exceptional individuals and how does one speak to the graduands of 2013? I think the fact I was asked to do this was the honour itself, for it assumed I have something important or significant to share. I wanted this to be very special, for them, as much as for me. I suddenly felt I had been granted a unique opportunity, and hoped I could make a difference in the day, and in the memory of the day for the students who would be in attendance on June 17th at 1:00pm. I knew there would be a week of convocation exercises, and those assigned this time slot were to be my special audience and I there special guest.

I pondered many topics and listened to other speeches by notables like J.K. Rowland who addressed the class of 2013 at Harvard. I reflected on what had impressed me at my BA graduation in 1968 when Maurice Strong addressed U of C grads at the Jubilee Auditorium in Calgary. I had been impressed then, though today I don’t remember his precise words, but I remember sitting in the audience, his name being called and his address, inflection, his very presence causing me pause, and making me think about my future. I went to Africa shortly thereafter, and I wonder how much he moved me to think about serving others.

So, whether my words will be remembered, or whether I am expressing too much ego, I will provide a link here to my written address and a link to the video excerpt of my presenting it at the convocation, when they are available, then you may consider if my message says something of value to you.

I wish everyone a very special day when you too feel appreciated, even made to feel like royalty. It was truly a wonderful experience.  Since I acknowledge my children in my message, let me add another lesson they taught me and it is that  “everyone is special.”

Click here to watch my speech, or read the transcript here: Andria Spindel Convocation Speech Transcript

What I Learned on Vacation

I’m on vacation with my 18 year old daughter, Mattea, and we came to a
picturesque mountainside mini-golf course in Virginia. Its hardly worth
writing about, except that we played, I did exceptionally well, and Mattea
laughingly said, “Are you going to blog about your talent?” Since I
absolutely never learned any sport, am not athletic, and have only lately
begun to think about being fit, I realized several things about life while
playing miniature golf.

Firstly, I had fun, secondly, I  greatly enjoyed being out of doors, and
thirdly, I chose to play for no other reason than we passed by the course
as we were walking.  How wonderful to be  outside on a beautiful
afternoon, and how wonderful to be relaxed enough to choose a playful, fun
activity requiring no serious effort. It was most amazing to find I had
enough eye-hand coordination to play well.

So, here is what miniature golf with my daughter taught me today.

Take time to have fun. Play with your kids, even if they are already 18.
Take a stroll outside-there may be a pleasant, engaging surprise on your
path. Don’t pass up the opportunity to test your skills, whether at
something simple, new or challenging.  Laugh when you miss the hole, it
makes you feel better and the game goes on.

The last lesson,( as I scored well,) is that we are all good at something.
Mattea figures my sport is mini-golf. Well, it might be, but I realized
(again) today, that walking, playing, moving in any way is  an imperative.
Our bodies are machines with moving parts that need lubrication,
alignment, adjusting, revving up, and cooling down. Being fit isn’t about
mastering a sport, or massive exertion, competition, or perfection. Its
caring for one’s body by using it, tuning it up, and moving!

I wish everyone a healthy, fun-loving season. Get outdoors. Play. Move. Be
well.

Andria

Counting Blessings

While one may not be able to count something one doesn’t recognize or understand,  there are depths of meaning to this phrase, “count your blessings,” so maybe it applies whether one is secular or religious.

In some faiths, one is instructed to literally count or recount the blessings that one receives, and at special services, these might even be itemized, such as a blessing for food, for family, for peace. To one faith, a blessing is bestowed by God, and shows his favour, and in another, it is believed sufficient to be of that faith to receive or to be part of a collective “blessing upon mankind.” One major faith involves gifting to the representative deity or deities and receiving his or her blessing, or the priest may offer a blessing which might be to pass the special power of the specific deity to the individual. A blessing may come as a formal permission that the devotee requested, or it may come as a “wish for” or granted consent for a decision one makes in life.

Blessing in some churches is a term for marriage and in another sphere it is an initiation rite, and getting “blessed” by a security officer might be an unpleasant experience. The latter is the only use which I am not addressing. Some communities have the practice of blessing something new, such as a new structure, new garden, new church or temple.  Some faiths include a parental blessing for children, wishing them a healthy and happy, long life.

This is a very brief snapshot, but I am intrigued by the notion of “blessing” as a form of prayer, an act of faith, a moment of contemplation, an act of gratitude, a recitation of repeated, oft-used phrases that resonate with the user. Being blessed, giving or bestowing blessings, requesting blessings, or simply repeating one to oneself, seems to have a potency that inspires, reinforces, connects the blessed or blessor with something familiar, special, larger than life or, in my case, with life itself. I am learning what prayer is, and what power there is in a blessing.

My thinking is this-if everyone shared a blessing, or acknowledged the blessings we have in life, those things about which we often take little notice but which give us great pleasure, we would all be happier, less likely to be volatile or angry, and perhaps we’d be more attune to one another.  Here is a short list of things I feel gratitude for or “blessed with:”

A loving sister who has been witness to my life and shares my love of family;

Three children who inspire me;

Two cats who curl up in bed with me;

A job which uses and acknowledges my creativity and energy;

Colleagues who value me;

Friends who love me and whom I love;

A small garden in which to grow a few herbs;

My health which is potentially transient;

The sun in the morning and the moon at night;

A special love who enrichs my life;

People who give a sober second thought before speaking;

People who take time to be kind to one another;

An organization to be associated with that values individual and collective contributions;

Friends of many different faiths and secular friends too;

Grandparents who lived a long life and shared their wisdom;

Parents who loved me unconditionally;

Living in a democracy;

Flowers in my garden;

Fresh air when I open a window, more fresh air when I actually walk outside;

A mind that holds memories and an intellect that questions everything;

A sense of humour;

Friends with a sense of humour;

Bubbles in the bath;

Clean water to drink so I don’t need bottled water;

Coffee every morning;

A safe place to sleep;

A passport fromCanada;

Poetry and novels;

People who love poetry and novels;

Flat shoes and high heels;

Spicy food;

Art on the street;

Summer, autumn, winter and spring;

Dew on the grass;

A city with no mosquitoes;

Public transit;

Public galleries;

Public libraries;

Public parks;

Everyone who chooses to read my blog.

May you share the feeling of gratitude I experience every day and count your blessings too. If you are not yet feeling blessed, think kindly of yourself and share this blessing.