Employment Standards in the AODA

On March 9th, 2016, I had the pleasure of being a keynote speaker at one of the business conferences of the Conference Board of Canada, held in Mississauga. The topic was the Ontario Employment Standard and because it is so very important, and March of Dimes Canada is both a significant employer, an advocate and a consultant on accessibility standards, I am including my entire presentation here.

 ACCESSIBLE EMPLOYMENT PRACTICES: A March of Dimes Perspective

Employment Services represents almost 18% of March of Dimes Canada’s budget, and probably a greater percentage of the actual work done by March of Dimes, given that we provide vocational assistance to over 7,000 people with disabilities each year.  As like many Canadian families, I have firsthand experience with the economic, psychological and social impact of disability, having had a mother who suffered permanent mobility challenges from the time I was very young and she only 28 years old.

My focus today is on three aspects of today’s theme, Making Employment Practices More Accessible in Ontario. Firstly, to present the experience of March of Dimes, a major employer in the not for profit sector, secondly to underscore some of the “employment practices” that might most easily and immediately be considered in your own workplace, and thirdly to offer March of Dimes’ support to businesses which are committed to meeting the new Accessible Employment Standard in Ontario.

To set the context for March of Dimes experience as an employer, I think it’s very important to understand the philosophical, political and cultural underpinnings to our approach to fostering total acceptance and inclusion of people with disabilities.  March of Dimes was founded in the early 1950s to provide lifesaving support to people affected by poliomyelitis, and to fund a cure or treatment for survivors of this crippling disease.  Once the polio vaccine was universally approved and immunization a public health program, March of Dimes offered a variety of services to the survivors who had lasting disabilities and through the 60s and 70s expanded to serve people with all types of physical disabilities.  This was a time of changing attitudes about disability, from one of despair, isolation and even disengagement, to one of hopefulness, integration and engagement.   In the mid to late 60s, those with disabilities had not yet been given many opportunities, but were beginning to move back to community from large scale residential facilities and from sheltered workshops into mainstream employment.  Citizen advocacy was on the rise, and following the Civil Rights movement in the U.S., and then the women’s movement, the disability movement took hold in the 70s, with leadership from among people with lived experience.  Sometimes, this was encouraged and even fostered by NGO’s and funded by government.

In the late 1970s and early 80s, March of Dimes had a workforce of about 180 people that rose to several hundred by 1984, and at that time 30% of our employees were people with disabilities.  We were very much ahead of the pack, our employment statistics were better than perhaps those of any other Canadian company, in any sector, and the type of jobs were quite varied.  The range of positions held by those with disabilities included Procurement Officer, Program Manager, Administrative Assistant, Regional Director, Assistive Devices Counsellor, Government Relations Assistant, and Fund raiser.  There was no employment equity legislation, there were no regulated quotas, no ODA or AODA, but at March of Dimes, there was a strong board and management commitment to the recruitment and hiring of people with disabilities. One of the early successes related to a subsidiary entity called Operation Reliance, that was headed by a former Canadian Olympic skier, Wade Hampton, who himself became disabled as an adult when stricken with polio.  Wade became a successful stock broker and radio broadcaster, but not before he dedicated himself to the pursuit of fair employment for people with disabilities.  He was one of my early heroes, serving on our board for over 40 years and never losing his focus on equity for people with disabilities.  He was a great example of what people with disabilities had to do to prove their employability, they had to be better than able-bodied employees, look particularly “normal”, not challenge their employer about accommodation needs, and take great risks, especially if working meant getting off income support when it was not easy to get back on such a program.  March of Dimes sought to find like-minded and aligned employers, and in the late 1980s we closed all sheltered workshops in favour of vocational rehabilitation, job placement and job coaching and worked with employers to identify and sometimes modify work that could be done by an individual who had some limitations. Thus our Employment Services department became professionalized, work expanded and our clients became those job ready or seeking training and support to become job ready.

Wade Hampton represented March of Dimes in Ottawa when the late Honourable Flora McDonald first introduced Employment Equity legislation federally in 1995, requiring government and its agencies and contractors to set the example and hire people with disabilities.  It was new territory in Canada, and March of Dimes was one of the first to push for this legislation.  However, beginning in 1994, our own population of people with disabilities declined as a proportion of our workforce, and has steadily declined so I feel a need to address this with you.

Growth in our funding and service provision has largely been through expansion of attendant care support, this means hiring many front line workers who provide aids to daily living such as feeding, bathing, dressing and other personal services.  This is work that requires a significant degree of strength and mobility.  It has meant that if we include all employees, now only 3% of our workforce has a disability, but excluding the almost 900 attendants, 8% of our workforce today is composed of people with disabilities.  We know that not everyone will self-identify on our employment equity hire form. No one is compelled to disclose of course.  And we know from public policy and health studies that the largest disability affecting employees today is in the mental health field, so bear this in mind when implementing best practices because this population too must have your consideration, and will be far less likely to self-identify.

Through action and advocacy, we subsequently worked on provincial legislation to address all aspects of inclusion and were thus very much involved in the formation and adoption of the Ontarians with Disabilities Act which was proclaimed in 2001 and implemented in 2002, and later the Accessibility for Ontarians with Disabilities Act of 2005.  Because the ODA had limitations, was complaints based and did not achieve it’s hoped for outcome, successor legislation took a different approach.  The Accessibility for Ontarians with Disabilities Act, the AODA, deviates significantly from the ODA, in that it proscribes standards for implementation, monitoring and compliance, and has an enforcement mechanism, though that has yet to be demonstrably implemented.  This Act states what is to be done and does not focus on disability but on accessibility, laying out changes in many aspects of business processes and infrastructure, that could constitute a cultural shift, redefining how society should operate, and focusing on areas in which many sectors can improve in order to achieve full inclusion for people with disabilities.

The former legislation outlined a complaints based process for which a Human Rights complaint need be brought against an employer or facility that discriminated against a person or denied a service by virtue of that person’s disability. The onus was on that person to bring a compliant and prove discrimination.  The onus for accessibility under the AODA is on the employer, owner or provider of a service to report that they meet the standard or if not, how they are going to go about meeting it and by when.

The AODA is a major move forward, a first in Canada, in setting standards or best practices in the areas of customer service, employment, transportation, communication, public spaces and the built environment.  Failure to meet it can, but seldom does result in a penalty.  This fact may not be helpful.  March of Dimes has contributed to all the reports studying the impact of the AODA and supports a position for increased enforcement, for as with other legislation it makes a difference. For example, we don’t just talk about seat belts, speed limits, parking restrictions, no smoking environments, etc., they are all the law and all are enforced, sometimes with lots of peer pressure as well as legal mechanisms.  However, our primary commitment is to educate the public, the owners and employers, and to help all achieve the desired outcome, full inclusion of people with disabilities.

So, how have we addressed the AODA internally and what has worked?  We were sure we would satisfy every standard because internally we already had an affirmative hiring policy, accessible documentation, a policy to only  lease or rent totally accessible facilities whether for office space or a one time meeting, conference or event; and that along with a resource tight budget, was not always easy.  We had experience with adaptive equipment for employees with a disability, from accessible hardware and software, use of a TTY phone, to hosting a helper dog for a visually impaired employee.  We had provided flex time and were the first in Canada to challenge the insurance industry on their exclusionary coverage of people with a prior condition, showing them that a permanent disability did not automatically mean a higher rate of claims for illness, but in fact that employees with disabilities often had better than average attendance records.

However, we did a thorough scan after first creating an internal AODA committee in 2011 with representation from every department, and from across the agency geographically.  With the first and then subsequent standards, we did an audit and we formulated policies that articulated our commitment to meeting the AODA standard and even exceeding it.  We invited people to tell us what needed improvement and we communicated our progress.  We posted our commitment in every office and provided updates in our employee newsletter.  Like all of you no doubt, in meeting the Customer Service Standard, we required every employee to complete a training program, ours is online, and we include a commitment to this standard in every vendor and consulting contract. For employees with a disability to see a company taking seriously the fulfilment of their AODA commitment, adds credibility, builds loyalty, reduces feelings of exceptionality and builds team work.

I would like to provide a few facts for you to consider how far we have come, know how far we have yet to go, and to see the pathway to getting there.  Let me cite an example of a major cultural shift, affecting people born with a development disability, often complicated with physical limitations.

At the turn of the 20th century, the average life expectancy of a person with Down’s Syndrome was 9 years and in the 1950s it was about age 21.  The life expectancy for people with this condition has slowly risen each decade, to the point that now there are national and international meetings about people Aging with a Development Disability.  In the 1980s, there were only sheltered workshops for people with an intellectual or development disability, but a decade or two earlier, there were only residential facilities where there was no work, little if any activities, and probably no intellectual stimulation as our ideas were archaic, suggesting that people with a developmental disability could not learn.  Medical advancements as well as social advancements mean that people with such difficulties have been helped to live longer, to live in the community, to receive an education, to achieve a level of independence, and to contribute to society.

The Houston Chronicle online has been running a series of excellent articles on employment for people with disabilities, covering the law, statistics, workplace practices and even employee responsibilities.  Here’s an example:

Employment can be a difficult prospect for adults with developmental disabilities, and the U.S. Census estimates that only 20 percent of developmentally disabled adults are employed nationally.  Yet jobs are important for disabled adults who seek greater independence and financial self-reliance.  Knowing the types of jobs available for developmentally disabled adults is an important step in preparing for employment prospects.

Today, we know that people with an intellectual impairment can be found working in many different settings, from retail shops, to restaurants to packaging and more, and it only requires that one assess the exact needs or tasks to be done and provide on the job training and support for the successful placement of a person with a developmental disability.  Knowing the exact tasks, matching the individual to those tasks is what is primary.

March of Dimes had a high proportion of employees who had had polio, and became a leading advocate for those who years after contracting the disease experienced Post-Polio Syndrome and often were too fatigued to continue to work, retired young, or even passed away.  Yet, we have never moved off our position that people of all abilities be considered for employment, that it’s important to match skills and knowledge with the real needs of an employer, and to provide job accommodations to enable employment for people with disabilities.

I would like to cite some examples to give credence to what I am saying.

In the 90s we acquired software driven by speech for an employee who had a significant physical disability that included spasticity so typing was not easy.  She was assessed as typing 8 words per minute, but she did all of the job well and we had no issues.  We could see the huge struggle that this employee endured and the extra hours she worked to meet the job requirements.  With provincial funding, we were able to add a talk-to-type program to her computer.  This required a lot of work on her part initially as she trained the software to recognize her speech patterns and pronunciation in order to produce accurate copy.  In addition, this young woman could not adequately handle paper so filing was difficult.  When we learned that her father assisted her on weekends to get her filing done, we changed the job so that someone else did filing and she focused on key aspects of the job.  For despite the level of difficulty that she experienced due to cerebral palsy, this employee had a BA from a very reputable Canadian university and had shown excellent skills with people, in government relations, in consumer service, and in her work ethic.

For many years, we had a Community Services Manager at head office who had a vision impairment, so much so that she required a guide dog in order to navigate the building, the streets, and the wider community.  Despite that, this Manager worked on a computer, handled our public advocacy portfolio, handled municipal representation on our behalf, spoke publicly and organized meetings, events and a variety of activities for people with disabilities.  The accommodation that we provided was first and foremost, a welcome mat for the guide dog, and secondly, software that enabled the employee to work with little vision. This individual was raising three biological children and seemed to have no end of energy as a parent and a full time employee.

Today, I have a few more current examples of accessible business practices for your consideration.  These practices include documenting individual work accommodation plans for employees when required, especially after an injury or illness, create an active return to work process, as part of the integrated disability management system, and overall provide support and flexibility to enable an employee to assess their own capabilities and contribute ideas on how best to accommodate.

For example, an employee with low vision provided her supervisor and our Health & Safety Coordinator with medical documentation and an assessment on her functional abilities.  She required some assistive device and ergonomically appropriate equipment.  Specialists in the enforcement of visual aids were consulted and priority given to addressing her IT needs also.  With assistance from an outside vendor, she received special software and the applications she needed to be successful.

In the last two years, we modified duties for a long term employee returning to work after a lengthy illness, returned a worker to work post-surgery, and more recently helped an individual return who suffered a concussion on her off time return to work.  Each situation warranted very separate special consideration.  The first employee had travel significantly reduced and some aspects of her job shared, but after several months, she chose to retire because of unrelenting fatigue.  The second employee chose to reduce to part time, and the third employee has received some office set up modifications, flex hours and works more from home as she experiences a transition post-concussion, back to normality.

None of these experiences are unusual and out of the norm.  With an increasingly aging work force, they will be increasingly normal.  Each of the three disabled employees had more than 15 years of service and range in age from 48-71.  I believe key to their successful re-integration in the work place is respect, communication and accommodation.  Not to provide accessibility or accommodation will cost an employer some of his or her best talent, waste training investments and lose role models and knowledge transfer agents.  Hiring new people who have physical disabilities will address talent gaps, societal inequities, provide committed, dedicated employees, enhance customer loyalty, enrich the workplace, and of course avoid penalties.  Doing it for the right reason will bring personal gratification.

At March of Dimes Canada we also know that employers want motivated employees who are reliable and dependable.  It’s important to match candidates to the exact needs of the employer and get someone “fit” for the position.  This is true regardless of a disability, but even more so when placing a person with a disability.  The nature of work is changing the prevalence of disability is changing.  We need collaborative approaches to serve both the employee and employers.  The Accessible Employment Standard of the AODA is a great starting point, because by removing barriers to employment, the goal of candidates increases.

What can March of Dimes offer to assist business?  Whether public or private sector, small, medium or larger companies, our consulting arm, AccessAbility Advantage®, can help you address each of the AODA Standards.  Our joint venture partnership with Quadrangle Architects assures quality in accessibility audits and designs for the built environment, and our various assessors and auditors have experience and training in many aspects of the various standards.

March of Dimes continues to focus on outreach and recruitment of people with disabilities, through a number of steps, including advertising that we are an equity employer, offering a welcoming work environment for people with disabilities, and an accessible workplace.  We continue to strive to be among the best in class by addressing all of the AODA standards. I want to add something very relevant that I learned from our employees who participated in our recent Quality of Work Life survey, a survey conducted every 3 years across our organization, by an independent research firm. While the results on a large number of attributes is very good, you might be surprised by the response to a question about what drives employee engagement, obviously an attribute we value very highly. High engagement generally means high level of satisfaction, loyalty and commitment. In both our 2012 and 2015 surveys, organizational support for diversity was identified as one of the top three drivers of engagement. In 2012 organizational diversity was the number one driver and received a score of 82.3% while in 2015 it was ranked 3rd in importance by the average increased to 84.5% (client satisfaction and employee’s role in the organizational vision were rated 1st and 2nd). The description of this attribute is as follows: March of Dimes Canada values and promotes an environment that supports physical accessibility. People feel that MODC respects and values people of diverse groups including people with disabilities as well as those from minority cultures and ethnic groups.

Our overall focus is on eliminating or preventing discrimination by changing society, creating accessibility for all people, and understanding that everyone in society needs to be taken into consideration, in order to optimize their independence and integration, making an inclusive society.

 

 

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.”

Think of Your Worst Day Ever–Then Think Again

The poem below has gone viral and been translated into multiple languages. It was written by an American high school student from a  deeply religious community. While she  has a belief in a “Supreme Being,” some might say she is too traditional or dismiss her as an idealist. In an age of “reason” or post enlightenment, it’s sometimes hard for some of us to get our minds around that which constitutes religious belief, what it means to believe in a “Supreme Being” or Oneness. It’s interesting that this concept was discussed recently on both Canada’s national radio station CBC and in a national newspaper. Why is there even an interest in talking about “God”? This young writer evoked a huge response in people; she helps us see how our individual lives are created by our own inner life.

Worst Day Ever?
by Chanie Gorkin

Today was the absolute worst day ever
And don’t try to convince me that
There’s something good in every day
Because, when you take a closer look,
The world is a pretty evil place.
Even if
Some goodness does shine through once in a while
Satisfaction and happiness don’t last.
And it’s not true that
It’s all in the mind and heart
Because
True happiness can be attained
Only if one’s surroundings are good
It’s not true that good exists
I’m sure that you can agree that
The reality
Creates
My attitude
It’s all beyond my control
And you’ll never in a million years hear me say
Today was a very good day.

Now read it from bottom to top, the other way,
And see what I really feel about my day.

Now that you have read this poem, do share what you too think about it. For me, the idea that every day is important, valuable, ephemeral and then gone, is an important guide post for living.  It probably comes with having passed the magic  or mysterious age of 65, and knowing there are not 40 more years down the road. So, now I know that it’s important to make every day relevant, beautiful, lasting…  in memories, in reflections, in hopes and aspirations?

The young woman who wrote this did not know her poem went viral.  I doubt that she wrote to influence others, but she has given a lot of people something to think about, something to believe in. She understands that our thoughts and attitudes, our decisions are ours, and we create our own satisfaction and happiness.

The world is indeed dark in many places these days, and the suffering is immense. It’s imperative that we each take responsibility for our own world view, and bring contentment through our personal perspective, and in so doing, we can indeed influence reality more broadly. I commend Ms Gorkin for her novel, heartfelt poem, and urge others to see the light in the world, and do more to illuminate it.

http://abcnews.go.com/US/york-teens-secretly-inspirational-poem-viral/story?id=32664788

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.

The Festival of Freedom

Everything can be taken from a man but one thing: the last of human freedoms — to choose one’s   attitude in any given set of circumstances.

– from Man’s Search for Meaning, by Victor Frankl

freedom_festivalIt’s Spring again, and with it we celebrate the renewal of the planet, the return of nature’s greenery, the sunshine on our faces, the rain showers replacing sleet and snow, and the promise of summer.

Human beings seem very moved and connected to the seasons, and more light-hearted, happy and energetic when it is Spring. In this season, we have a celebration with which I am most familiar, that of Passover. According to the Wikipedia, “The Jewish people celebrate Passover as a commemoration of their liberation by God from slavery in Egypt and their freedom as a nation under the leadership of Moses. It commemorates the story of the Exodus as described in the Hebrew Bible especially in the Book of Exodus, in which the Israelites were freed from slavery in Egypt. According to standard biblical chronology, this event would have taken at about 1300 BCE (AM 2450).

Since the story of Moses appears in the Holy Books of all three Abrahamic faiths, I am going to risk being particular and talk about the message of Freedom. What does it mean to celebrate Freedom, what does it mean to be a free people, and how does that relate to the rights of people with disabilities, or any marginalized people? How can we extrapolate from one cultural experience and benefit another?

The Freedom from slavery described in Exodus is literally physical freedom, as slavery affected several generations of Jews in Egypt, (following the time when Jews had been welcomed by the Pharoh because of Joseph’s successfully interpreting Pharoh’s dreams and preparing Egypt to survive a great 7 year drought.) Jews are required to consider that in every generation we must free ourselves from slavery AND remember that we were once slaves in Egypt, and therefore, work to free others who are enslaved.

According to the scriptures, (or the myths whichever one prefers), the Jewish people became too multitudinous and the Egyptians feared or were jealous of their success, so they declared them non Egyptians and enslaved or bonded them to work for the State, and the story goes, used their labour and denied their rights and freedoms. As time went on, their number must have still increased for Pharoh demanded the death of all Jewish male children. One child is saved, Moses, who is rescued by Pharoh’s own daughter, and as the story continues, he grows up to challenge Pharoh, and eventually wins freedom for his people, taking them forward to claim the land that God had promised.

What is inherent in the story are the many ways that “freedom” can be interpreted. All of the people are to be “equally” free, not some demeaned by others, or having fewer freedoms. Today, as Jews study the story and tell it again and again, each year remembering and renewing a commitment to freedom, we are required to think about the concept. Are we free of things that hold us back from achieving what we are capable of achieving? Are we enabling others to be free? Are we free to express our views, to access services and to participate actively in our society? Are we among the voters in a democratic country? In other words do we appreciate and express our freedoms by active engagement? It is really not that long ago that women in Canada did not even have a vote!! Voting rights for women were introduced in several provinces in 1916, then in 1917 in others, but federally not until 1921. One of the icons of March of Dimes is The Honorable Ellen Fairclough, first Canadian federal cabinet minister and a former Chief Marching Mother.

The Canadian Charter of Rights and Freedoms, promulgated in 1982, was a tremendous landmark, guaranteeing basic rights to Canadians, but original drafts did not include protection of rights for several groups, people with disabilities, the LGBTQ community among them. March of Dimes was an advocate, and actively pursued the inclusion of people with disabilities. I am reminded of our protestations on the Not Withstanding Clause that allowed Quebec to opt out of certain provisions, as we feared that this could include not providing protection of rights for people with disabilities. We know today that is unlikely to occur; and that Human Rights legislation at the federal and provincial levels, guarantee equal treatment before the law. At the conclusion, many important aspects of freedom were embellished in the Charter and here are significant aspects of what are called Fundamental Freedoms:

Everyone has the following fundamental freedoms:

  • (a) freedom of conscience and religion;
  • (b) freedom of thought, belief, opinion and expression, including freedom of the press and other media of communication;
  • (c) freedom of peaceful assembly; and
  • (d) freedom of association.

I recommend reading the entire Charter document which describes other freedoms that we cherish.

We should think about other ways of viewing freedom; for example, freedom from other people’s perceptions and attitudes that hinder acceptance, be it socially, psychologically or morally. These are harder to define, but this speaks to the idea that ‘justice needs to be seen to be done,” not just that it’s said to be done. So, appropriate customer service in retail, access to recreational venues, fair pricing for transportation services regardless of disability, support in caregiving, and other softer areas of life, are now addressed in the Accessibility for Ontarians with Disabilities Act, and this Act has just undergone a major review. The Act declares that Ontario will be barrier free by 2025 and as it’s been in place since 2005, we are at the half way mark. While still a long way to go, in my view, this Act makes concrete the ideas of freedom, including inclusivity, accessibility, equality of opportunity, and basic consideration in seeing people with disabilities as people first, disabled second.

So, as Spring moves into summer, may everyone enjoy the radiance of sun and longer daylight hours, but recall that it’s not sunny for everyone. Many people do not have basic freedoms in today’s world, many women have few or no rights in countries that don’t value equally all of their citizens and remember that here at home, we have the challenge of creating a society that is fully inclusive and ensures that people with disabilities can exercise their freedoms.

WHY JANUARY 27, 1945 SHOULD MATTER TO EVERY PERSON IN OUR SOCIETY

“Action T4” (German: Aktion T4) is likely not a familiar term to most Canadians, but to those of us in the disability/rehabilitation sector it should be, and it should remind us that ignorance and evil dealt enormous cruelty upon people with disabilities as part of the Nazi-era agenda. Our purpose must always be to recognize and support the dignity, equality and humanity of our fellow human beings, including those with disabilities.

The Holocaust that resulted in the death of 6,000,000 Jews, included an official government sponsored program from September 1939-August 1941 that led to the extermination of 70,173 people with mental and physical disabilities, followed by an ensuing, less official, elimination of another 200,000+ people with disabilities.

Treigartenstabe 4, the address of a villa in Berlin, in the borough of Treigarten, was the headquarters of a supposed care institution, that really served as the headquarters for Adolf Hitler’s private physician and henchmen who directed part of a eugenics program aimed at “cleansing racial enemies,” including people with disabilities or mental health issues, from the German body politic.

Why must we remember January 27, 1945 and continue to memorialize those murdered and celebrate  this day? Because on that day, the Soviet Red Army liberated one of the most notorious, sickening and inhuman death camps, the Auschwitz Concentration Camp which included both labour and extermination camps, where at least 1.1 million people died. The place? Oswiecim, Poland.

Of those killed, “90% were Jews, but there were 150,000 Poles, 23,000 Romani and Sinti, 15,000 Soviet prisoners of war, 400 Jehovah’s Witnesses, thousands of homosexuals, and tens of thousands of other people of diverse backgrounds. Those who did not die in the gas chambers, died of starvation, forced labour, infectious diseases, individual executions and medical experiments. “ (Wikipedia) The latter practice was part of the treatment of people with disabilities under Action T4.

On November 11th each year, we in Canada, commemorate the end of World War II; Remembrance Day  is a day to honour our own fallen soldiers. Lest we forget, millions of people died, for no reason other than their difference,  their “otherness”, their “distinctiveness”, whether in dress, beliefs, customs, language, physical appearance, mental state, or sexual preference. We honour their memory on January 27th, International Holocaust Remembrance Day, a UN sponsored commemorative day which should remind us that human beings can be extremely inhuman, that “NEVER AGAIN” MUST MEAN  NEVER AGAIN, and that all human life has meaning, all human beings have value. Arising from the ashes of the crematoriums were several significant outcomes: The United Nations itself was created to help the world end hatred, end anti-Semitism, and end war. Has it been successful?

The State of Israel was established by the UN, to provide a permanent home for the Jewish people, allowing Jews to return to their ancestral home, should they wish. The concepts of equality, freedom, tolerance, inclusion, diversity, became part of our lexicon and our common values  post WWII. It didn’t all happen at once. In Canada, we have the Charter of Rights and Freedoms which guarantees rights to all citizens, but its taken specific legislation like Ontario’s AODA (Accessibility for Ontarians with Disabilities Act) to cover full inclusion for people with disabilities, and other institutional frameworks have also evolved to support these values. At the UN, we have an international Convention on the Rights of Persons with Disabilities, endorsed by Canada and may other countries, setting a standard on human dignity for people with disabilities.

For March of Dimes, and every disability/rehabilitation organization, our legacy must include knowledge that the horror of Action T4 is the antithesis of our values, and that our vision is always to strive for a society inclusive of all people with disabilities. We have a moral obligation to remember the past and to create a better future; loving and valuing the vulnerable, and those with disabilities among us.

Remembering a Friend or Loved One

Reuters/REUTERS - A woman places a poppy on the Tomb of the Unknown Soldier following the Remembrance Day ceremony at the National War Memorial in Ottawa November 11, 2013. REUTERS/Chris Wattie

Reuters/REUTERS – A woman places a poppy on the Tomb of the Unknown Soldier following the Remembrance Day ceremony at the National War Memorial in Ottawa November 11, 2013. REUTERS/Chris Wattie

It’s the time of year, as Remembrance Day approaches, that many Canadians think back on lost or injured loved ones who fought for Canada in the last great War, or more recently in the war against terrorism in Afghanistan, or in a number of support missions that engaged Canadian troops. What mostly comes up for me is the recollection that my father shared about his service in Canada’s air force during WWII, while stationed in England. He only once spoke of the horrors, saying he had held a friend who was hit by an enemy attack over England and died in his arms, but my father was part of the service and support, not one who flew in a fighter craft. My father, like so many of his generation,  preferred this his daughters never know of the real horrors of war, and that peace would be our lot in life, and the world would never again witness such trauma and destruction as war, especially the war that eliminated 6,000,000 Jews, as well as dealt death to people with disabilities, to Roma, to gays and lesbians and to other minorities that got in the way of Hitler’s vision of an Aryan race dominated world.

That wish, for perfect peace, has never been fulfilled.  Much of the world has experienced various horrors related to wars, but events of the past week have awakened Canadians to what could be, what must never be, a war at home.

We were all aghast at the murder of two Canadian soldiers in two separate terror attacks, shocked by the senseless violence, by the probable association with an ideology that attempts to trump all others, as did Nazism, Communism, Fascism. We are all afraid to speak of it, afraid of being labelled, but that does not improve anything. An ideology is not a person or a people, it is a belief system and in this case, one that is attempting to impose its will on other people, and to eliminate those who disagree. But I write not to debate any religion, belief system, political ideology, but to point out the humanity of individual Canadians and how that binds us.

As the shots rang out in Ottawa, one of the five people that ran towards the Canadian War Memorial to assist the fallen soldier, Corporal Nathan Cirillo, was Barbara Winters, a former Canadian naval reservist who had served as a medical assistant, and now a lawyer in the government, who recounted her story on CBC radio. Not only did Ms Winters and the others perform CPR and other procedures in an attempt to save Corporal Cirillo’s life, but she did a most heroic, kind and caring act. She began telling him how much he was  loved and how proud everyone was of him.

“I kept telling him repeatedly that he was loved, that he was a brave man,” said Winters through tears. “I said look at what you were doing — you were guarding the dead. You were standing at the cenotaph. I said we’re all so proud of you, your parents are so proud of you, I said your family loves you, everybody here that’s working on you loves you.”

This selfless, simple act, was so profound, so deeply felt, so amazing. Her spontaneous response, to speak of love, brought me to tears just listening to the newscast. I heard Barbara Winters, in tears herself, recounting what came to her mind and why she did this. She spoke of two things: sharing such a message of love when she sat by the bedside of one of her beloved parents, even knowing the person was already in a coma, she still sent messages of love, believing she was heard, and secondly, she spoke of her conviction that everyone is loved, by someone or even many people. Love, is a message that one should take unto one’s death. She did not want our innocent Canadian soldier to feel alone, to feel only his pain, to die without being reassured of his being loved.
Of course, we have come to know how very much Corporal Cirillo was loved, and of the love he has earned from across the spectrum of Canadians, young and old, coast to coast.

So, now think, have you reminded all the people in your life how much you love them? Are you remembering friends, family, fallen or forgotten allies whom you love or loved? Sometimes, we have to give ourselves the love we might not have received, that we can attribute to someone who maybe did not know how to show it, be it a parent, a child, a spouse. As Barbara Winters said, no one should be without love and no one should die lonely, alienated, feeling unloved.

As we approach Remembrance Day, may we all find peace and love, and think of our Canadian troops who sacrifice all for the security of our country, for peace in the world, and so that we may freely express our love for one another.

From My Window—I See Canada

photo 3The view from Emmashill Cottage in Woody Point, Newfoundland (where I spent the past week) is as dramatic as a Lawren Harris painting. Harris has always been my favourite of the Group of Seven. The mountains of Gros Moran National Park (really mountain roots I’ve learned) are like living, breathing creatures, gigantic sleeping dogs. They appear solid, warm, protective. Unlike the majestic Rockies of my childhood (I grew up in Alberta), they tell a different story, and harbour a unique Canadian people. No cowboys or ranchers here.

 

Newfoundlanders are hearty survivors, most from small towns and villages like Woody Point, Norris Point, Trout River, Rocky Harbour or the many now extinct out ports which they recall with pain after being forced to relocate by government fiat. Here is how resettlement is explained in Wikipedia:

 

photo 2Resettlement in Newfoundland and Labrador terms was an organized approach to centralize the population into growth areas. Three attempts of resettlement were initiated by the Government between 1954 and 1975 which resulted in the abandonment of 300 communities and nearly 30,000 people moved. Government’s attempt of resettlement has been viewed as one of the most controversial government programs of the post-Confederation Newfoundland and Labrador.

 

People moved, bag and baggage, even towing their small colourful wooden homes across a bay to a new location. Their hearts, their memories, their buried loved ones were left behind. But the sturdy folk of Newfoundland and Labrador carried their heritage, and continued to create art, music, and a culture of humour, warmth and humility. They kept alive the happy and the sad memories in songs which I heard everywhere throughout a Summer music week festival.

 

photo 4I’ve experienced Canada from the tip of the West Coast, traveling to Victoria and Prince Rupert, BC, to the East coast in Charlottetown, PEI, and to the North where I lived and worked in Igloolik, NWT (now Nunavat) for a year. I have travelled the entire TCH (TransCanada Highway), including now on the island of Newfoundland, and its remarkable what binds us as Canadians. It the friendliness and good cheer, the acceptance of diversity and change while still honouring the historic and our early British, French and native peoples’ heritages that laid the foundation for our values and culture. Many people have had “travail” and experienced loss of some magnitude, but it seems to have made us stronger. Hopefully we are bonded by a love of this country—its vastness, openness, hardiness, and its challenges.

 

Canada still has to do much more to create equity for all people, to provide better health, security and opportunity for our aboriginal people, and to incorporate at all levels of society those who have disabilities, but it’s a country that has such opportunities, values and humanity, that this is all possible.

 

Let’s all celebrate our good fortune that we live in Canada.

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.

 

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