Summer 2009 Health Education, Advocacy & Leadership
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Acknowledgements
FEATURES
Editorial
Letters
Transition Goes Green
Lillian Wong: A Glimpse of Possibilities
What Makes us Healthy or Unhealthy?
Are you an Accidental Leader?
Getting the Most from Talking to Your Doctor
Dan McKenzie: Personal Leadership and Wellness
Anything is Possible
Dave's Self-Esteem Checklist
Carol Dixon: Leaders are Mentors
What's Really Needed to Promote Population Health
HEALing Forward: Help us Decide What's Next
OTHER
Make EI Accessible and Inclusive to Canadian Women with Disabilities
BCCPD Faces: Sam Bradd
SPECIAL
Farmers on 57th
New Help Sheet: RDSP
Transition Web Extras
At a glance you might think that the focus of this issue of Transition is “health.” A closer look, however, will reveal that it’s about power, happiness, stories, gifts, community, friendship and … the meaning of life.
Health, or more holistically, wellness, is complex and variable–especially if you live with a disability or chronic health condition. In seeking a “container” or description of the key aspects of living well with a disability, I finally settled on HEAL: Health Education, Advocacy and Leadership. In this Transition, we introduce HEAL and show why I now see it as more of an attitude or philosophy than a container.
As I began to talk to people with disabilities about HEAL, I realized that the relationship between education, advocacy and leadership was sometimes quite fluid. Leadership could be seen as advocacy or education might take the form of leadership. Sometimes all three were combined.
Perhaps the most interesting observation has been the reaction to the notion of leadership. A common response was a firm “Oh no, I’m not a leader!” People described “mentorship” or “showing a glimpse of possibilities” which, within the context of the conversation, were clearly forms of leadership. Inside this Transition, you will read more about my definition of personal leadership and why I believe it is so important for people with disabilities to recognize and claim their leadership potential and value.
Shelley Hourston is the program director for BCCPD’s Wellness & Disability Initiative, AIDS & Disability Action Program and Health Literacy Network
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I am very thrilled that everyone is doing well after looking at the recent Transition (Spring 2009, Welcome to BCCPD). I have missed all of you! The experience I received from volunteering with Advocacy Access for 4 years was wonderful. It helped me with my self-confidence and helped me branch out. I am now on the Surrey Consumer and Family Advisory Committee which educates the public on mental health issues, and I’ve become a certified Peer Support Worker helping people with mental health issues one-to-one. Perhaps one day I may need your help for one of my clients. Sincerely, Karen Bird
I hear Michael Ignatieff and the federal Liberals plan to introduce changes to Employment Insurance, in light of the recession, to help unemployed Canadians weather the economic storm caused by others’ greed and mismanagement. While they’re at it, they should look at reforming and improving the Canada Pension Plan–specifically, disability provisions in the event workers are unable to continue at their jobs. Acquiring a disability shouldn’t suddenly mean a new life lived in poverty. Since most people who are employed do not enjoy a private insurance plan, unless otherwise provided by their employers, they’re at high risk for homelessness should they suffer a disability. If the Liberals and/or Conservatives want to really help people in need, they’ll raise benefit rates. For example, a high-school graduate who takes a job at a construction site as a labourer, who then is injured, is eligible for quite generous Workers’ Compensation benefits. However, if this same worker couldn’t continue working due to mental or physical illness, they’d have to rely on either a CPP disability pension (if they qualify) or provincial welfare. This person would be lucky to get $500 a month from CPP versus about $900 on BC Social Assistance, based on rates for disability. A person considered employable would be eligible for just $610 per month and only after clearing a number of onerous hurdles. Imagine trying to live on less than a thousand dollars a month anywhere in the Lower Mainland, never mind trying to survive on only half that much while trying to get back on your feet. Disabled Canadians deserve better. When they suffer a life-changing injury or illness and can no longer work, they shouldn’t be sentenced by their governments to a life of destitution while waiting for subsidized housing that never comes. How many homeless people fit such a scenario? I’d be ashamed to hazard a guess. Sincerely, Barry Goulden
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The connections between health education, advocacy and leadership for people with disabilities have been percolating for me for almost eleven years–the length of time I’ve been at BCCPD. A favourite part of my work is listening to peoples’ stories and, because I work in the area of health information and education, I especially notice experiences and activities that combine to create wellness. Although the details and characters vary, three threads appear repeatedly in stories of people with disabilities who achieve a sense of wellness in their lives. My theory is that each of these threads–health education, advocacy and leadership–are especially powerful in developing a personal sense of wellness because they benefit others as well as ourselves. While we undoubtedly benefit from learning some “facts” about health issues, taking an advocacy stand or taking on a leadership role for personal issues, the magic of HEAL is the realization that our actions have a positive impact on others too. Research studies also support the notion that giving back or creating, called “generativity,” contributes to our health. Dan McAdams writes, “A growing body of psychological research shows that being highly generative is a sign of psychological health and maturity. People who score high on measures of generativity tend to report higher levels of happiness and well being in life… High generativity is also associated with low levels of depression and anxiety.”*
My theory is that each of these threads–health education, advocacy and leadership–are especially powerful in developing a personal sense of wellness because they benefit others as well as ourselves.
Although not the only way to wellness, HEAL is an approach that is within reach of most of us and is a recipe for generativity that easily incorporates our lived experience with disability. Let me explain more about the threads of HEAL.
The first thread is what I call health education or, more specifically, incoming health education. People with disabilities seek information and knowledge about health issues affecting them or aspects of their disability in order to understand, accept, adapt and move forward. The health education journey is not always clearly defined at the beginning. It may begin with a need for information to complete an application for disability benefits or perhaps to learn about a recent diagnosis. Health education can take many forms and can include information from public libraries, the media, support groups, or health condition–or disability-specific organizations, such as the Arthritis Society or the BC Persons with AIDS Society. It often includes practical and personalized information from health providers, like occupational therapists and physiotherapists. It usually incorporates input from family doctors or specialists and, if medication is involved, should include information from pharmacists. Learning about health is empowering and supports our confidence and ability to make decisions. It is also important for outgoing health education.
Outgoing health education is how I describe the educator role played by anyone with a disability or chronic health condition. Every time someone asks us a question about our illness, injury or the way that a disability affects our lives, we have a valuable invitation to provide outgoing health education. At that moment, we draw on our incoming health education and we become advocates and leaders. By sharing our story, we offer a glimpse of our experience with disability. It is an opportunity to describe challenges and barriers so that one more individual is more aware and understanding. It offers us a chance to articulate experiences and feelings to others and to ourselves–and we may be surprised by what we have learned and just how adaptable we are. Our stories of living with a disability can create a clearer path for someone just beginning the journey. We are all educators–a role that should not be taken lightly.
“My mom said to me within the first couple of years of my injury: ‘You’re a teacher now. Whether you like it or not, you’re going to be teaching people about your life and how you live.’ She was right. The key is to reach your comfort level and potential. You have to find your niche… and having mentoring and peers are a huge advantage.”
Johanna is an executive board member at BCCPD and a peer volunteer for the BC Paraplegic Association. She has been using a ventilator since an accident at age 12 left her as c2-3 quadriplegic. Johanna is a teacher working for the Vancouver School District.
The second thread is advocacy–self-advocacy and advocacy for others. Advocacy is defined as “verbal support or argument for a cause.” According to my thesaurus, an advocate is a supporter, promoter, spokesperson or a champion. I believe that health advocacy is a common thread in the lives of people living well with disabilities because it requires acceptance, confidence and determination. An advocate is energized to seek change, information, rights or equality. Whether advocating for personal issues, for family members, or a larger group, advocacy fuels a forward-looking perspective and action. A health advocate obtains information and knowledge and identifies available options. People with disabilities who are health advocates work toward being active participants in decision-making and experience a greater sense of control in their lives.
The third common thread found in stories of many people with disabilities is personal leadership. When I talk to others about personal leadership, most don’t recognize “leadership qualities” in themselves. Typically, we think of leadership as connected with politicians (sometimes) or heads of large organizations. Synonyms for leader include political heads and commander, but also include front runner, innovator, trailblazer and ground-breaker. Over the years, in story after story, I recognized leadership as one of the characteristics that moves people with disabilities to achieve a sense of wellness. The good news is that leadership, as I’ve described it here, is intertwined with health education and advocacy. Educating by sharing your story makes you a leader. Sharing your experiences and insights with others with the intention of shining a light for someone else is leadership. Leadership that creates wellness is often other-focused and helpful. In other words, most of us have leadership qualities, but call them by a different name.
What does the HEAL approach mean for you or people you know? How can you use health education, advocacy and leadership to create a greater sense of wellness in your life? You’ll find stories in this issue of Transition that illustrate some of the ways that people incorporate HEAL principles. The possibilities are almost endless, however, and you will have many more examples to share.
Please see HEALING Forward to see how you can be part of HEAL. * Dan P. McAdams. “Generativity: The New Definition of Success.” Spirituality and Health (Fall 2001). Available at: http://tinyurl.com/d9ev7h.
by Shelley Hourston My vision for HEAL–health education, advocacy, and leadership–has been inspired by my colleagues here at BCCPD–staff, volunteers, and board members–and many others in the disability communities across Canada and beyond. Lillian’s story is an example of the power of sharing our experiences and insight. Lillian works as an advocate at BCCPD and suffered a brain and spinal cord injury more than 20 years ago. After a year in hospital, she returned to school and believes that exercising her brain was a big help in regaining her memory. Lillian has since completed a master’s degree in counseling and a master’s degree in social work. In addition to her work at BCCPD, Lillian facilitates two brain injury support groups. Her professional training, personal experience and optimistic outlook allow her to help others navigate the challenges of living with disabilities. When I mentioned that I thought she epitomized my vision of HEAL, Lillian immediately said “I don’t see myself as a leader. I like to stay in the background… to help people see a glimpse of possibilities. For too many years my life was defined by and revolved around what I couldn’t do. I felt jailed by my disability and as a result, I saw myself as a victim and powerless. But I’ve also experienced the freedom of seeing the cup as half full rather than half empty. With this new perspective, I have the courage and willingness to try new things. My disability no longer defines who I am but rather my disability is only part of who I am. Once there is a shift in perspective, there is a shift in feeling and behaviour.” Lillian says that in her brain injury support groups she provides information about resources in the community so that people know what is available and can consider trying new things. “Knowledge is power and it gives them choices and options. I’m not trying to minimize the reality of their disability because their disability is very real and comes with unique challenges, but I’m challenging them to consider possibilities.” Asked how people can move forward, she says, “Just taking that one risk. It’s that first step that’s always the hardest. It’s like learning to swim … getting into the water is the hardest and the scariest. I encourage them to look at other people with disabilities. Join support groups and see what they’re doing. Yes, we will fall down and we will get hurt and we will cry. But the important thing is to get back up again and maybe try it another way.”
Working to address systemic and individual discrimination is at the heart of the Coalition’s work in British Columbia, and we need to coordinate our work globally to affect change. From inaccessible transit to barriers to employment, individuals with disabilities around the world experience individual and systemic discrimination. Therefore, the BCCPD is excited to be partnering with researchers at York University and around the world in a new interview project called “Disability Rights Promotion International”. Disability Rights Promotion International (DRPI) is a collaborative project working with disability organizations in Australia, Bolivia, Cameroon, Canada, Croatia, India, Kenya, the Philipines, and Sweden. The project will establish a human rights monitoring system to address disability discrimination globally. The monitoring system is focused in three areas: individual experiences, systemic experiences, and media monitoring. The focus for the BCCPD will be the human rights monitoring system for individual experiences: we will be coordinating an interview project in BC by people with disabilities, for people with disabilities throughout 2009. Similar projects are taking place in Toronto and Montreal. The project began in May with our interviewers coming to the BCCPD offices for a five day training. Through hands-on participatory education, the training gave the interviewers the skills they need to conduct interviews. Then, the interviewers head out into the community: the research will be held in Vancouver, in a suburb, and in Oliver, BC. Their goal is to complete 50 interviews in total with people who have a broad range of socio-economic backgrounds and disabilities. Each interview is approximately two hours long. Working to address systemic and individual discrimination is at the heart of the Coalition’s work in British Columbia, and we need to coordinate our work globally to affect change. In Canada, this project is funded by the Social Science and Humanities Research Council through York University. For the full project outline, including video and photos of the other participating Canadian cities, visit: http://www.yorku.ca/drpi/CanadaPeople.html.
You can also find more on this project on the BCCPD website, at this page. Sam Bradd is BCCPD’s Administrative Director
In Canada, we take a population health approach when looking at what creates health. According to the Public Health Agency of Canada, “At every stage of life, health is determined by complex interactions between social and economic factors, the physical environment and individual behaviour. These factors are referred to as determinants of health. They do not exist in isolation from each other.”* Our level of health is the result of the interactions and effects of the following:
Income and Social Status Social Support Networks Education and Literacy Employment/Working Conditions Social Environments Physical Environments Personal Health Practices and Coping Skills Healthy Child Development Biology and Genetic Endowment Health Services Gender Culture
As individuals, we have a degree of control over some of these factors. Many of the determinants of health, however, cannot be easily changed by individuals. That Canadians do not have equal access to healthy environments, employment, and health services, etc. is described as health inequity and is increasingly an area of focus for policy makers and health researchers.
People with disabilities are often negatively affected by limitations within the determinants of health. Income, education, employment, physical environment, including housing, and access to health services, for example, may be restricted because of a person’s disability. Leadership and advocacy skills become even more important in improving the overall impact of the determinants of health on our lives.
*Public Health Agency of Canada. “What Determines Health?” http://www.phac-aspc.gc.ca/ph-sp/determinants/index-eng.php
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Jayne Garner-Galarneau was recently recognized as Woman of the Year 2009 by the Canadian Federation of University Women. Below is part of her acceptance speech. Congrats Jayne! I am honoured and humbled to receive the Woman of the Year award for 2009. I have worked on over 75 committees and boards. You can be relieved that I’m not going to name all of them. I alone cannot do anything. There is an ancient Chinese proverb that says that dedication comes from inner strength. Inner strength comes from the people that pass through and influence our lives. I have been a systemic advocate and activist for mental health for 26 years. I have been very blessed with the people in my personal life: my husband of 22 years, our five children, seven grandchildren, eight great grandchildren, other family members and our caring circle of friends have brought both support and laughter to our home. In 1983, my advocacy first took me to the local Canadian Mental Health Association (CMHA) board. I later sat on the CMHA BC Division board. In 1994, I went on a Mental Health Delegation to China with a Citizens ambassador program. The purpose of the trip was to exchange ideas and get a better understanding of the Eastern Culture. I was also part of a committee in Cranbrook to address and eventually adopt a Charter of Adults and Family Rights and Responsibilities. The driving force behind this was the words of Prime Minister Brian Mulroney, as he signed the equality provisions of the Constitution of Canada in 1985. “Be relentless in the pursuit of equality …every individual is equal before and under the law and has the right to the equal benefit of the law without discrimination, and in particular without discrimination based on race, national or ethnic origin, colour religion, sex, age, mental or physical disability.” The Charter is a friendly way of dealing with rights. The equality provisions allow people to launch a court case if they feel discriminated against. With the decrease in court time, and legal aid at a premium, this is not feasible for many mental health consumers.The Charter is now with the Mental Health Advisory and Addictions Committee. I for one, both systemically and personally, have no interest in launching a court case. I want to walk down the halls of life in harmony with my neighbours. I wouldn’t be an advocate if I didn’t leave you with hope and a challenge for the future. I believe bringing about more community awareness around mental health and broadening community values will lead to a stronger community as a whole.
My name is Heather and I’m 37 years old, a wife, a mother, a clerical worker and a freelance writer. I’ve also been severely hard of hearing since I was a teenager. I could write pages about the way my hearing loss has affected me, but I suspect those of you who share my disability know all too well the turmoil that it brings. It brings wisdom and character, but sometimes it just hurts… a lot. Self-confidence comes from within, but it is hard to attain when you measure yourself against people who can hear. We all know life isn’t fair and who knows it better than the teenager who suddenly finds the lecture hall as silent as a tomb, while all the other students stretch out in their seats and listen, as easily as they breathe? Who knows it better than the worker who is overlooked for promotion, who cannot use the phone at work, who struggles through meetings and comes out of them exhausted and drained from the effort of trying to follow the different voices? Who knows it better than the young mother who doesn’t know her little boy loves to hum as he plays, until it is pointed out by a stranger? I’ve had my tears and my self-pity. Now that I’m older it still surfaces, particularly under stress–and deaf and hard of hearing people walk a stressful road. Our disability is invisible to most, tiresome and irritating to some, and truly understandable to a select few. The select few who care enough to understand and accept us in our journey to overcome our disabilities and become employable, lovable and whole are like angels in our lives. One thing I’ve learned is there are good people out there; their kindness sustains me and gives me strength to fight. It may sound melodramatic to compare hearing loss to battle, but somehow that is always what it is to me. You get up each morning, knowing you will make mistakes, hear incorrectly, embarrass yourself, but you get up anyway. You forget past wounds, as best you can, and you go out into battle once more. The tremendous courage it takes to simply survive in the hearing world with significant hearing loss is almost heroic. Yet it often seems that we fight alone. We need to find each other and fight for each other’s rights. We have so much to give, so much to accomplish. We don’t have to feel alone, the way we often do. I have felt trapped in my body since I was young and I don’t want to spend my whole life feeling this way. In the past year, I’ve decided to fight harder than I ever have, to heal myself from the past and to move forward.I would like to tell you about the ways I’m carving out a happy life for myself and finding joy because I know you have your stories too and we all need to know one another. This year, I’ve decided to go for it in my life and become a writer. I’ve decided to start my own business doing freelance work and to get paid for the writing that I do. In one of life’s truly exquisite moments, one of my articles was accepted for print in the May 2008 issue of Canadian Living Magazine. Then, my first novel was purchased by an American publisher, and it will be released in February 2009 (Carolina, Cacoethes Publishing House). Once again, I believe anything is possible, with or without my hearing. Heather Matthews is a freelance writer based in Vancouver. You can visit Heather’s website for information about her book: http://www.heathermatthews.ca. She also welcomes feedback and comments by email at heather.matthews@shaw.ca. Reprinted with permission. Originally published in the Summer 2008 issue of the Western Institute for the Deaf and Hard of Hearing (WIDHH) newsletter, The Wave.
"When my first romance novel was accepted for publication, I was ecstatic. Everything I do now seems to lead to another opportunity and I’m so grateful for that. I might have forgotten my dreams of writing if I didn’t have the disability. If life had run more smoothly, perhaps I would have moved in a different direction. It has taught me a lot and I use the lessons in my work."
The original version of “Dave’s Self-esteem Checklist” appeared in the May/June1999 issue of Transition. Since self-esteem is so vitally important to education, advocacy, and leadership, we asked Dave if he’d share some of his thoughts on self-esteem ten years later. His update appears as the second paragraph under each tip. Here are a few suggestions and guidelines that can help to enhance your body image and self-esteem.
Much as I fought against the rehab credo of “focus on what you have left,” I realize now just how important it is to emphasize your positive attributes. Meditation provides a wonderful opportunity to observe the mind at work (often called “the monkey mind or grasping mind” in Buddhism). We can learn to detach from negative thoughts, beliefs and attitudes by understanding where they come from and how our ego clings to these ideas to maintain its identity. We can change!
Be aware of the conditions or values you place on others. If someone feels that your love is dependent on something, then losing that something can, in their mind, make you stop loving him or her. Your behaviour is likely to be reciprocated. Often the conditions we place on others also reflect the needs of our own egos and old unchallenged values. When we become more open-minded and compassionate, our judgements and conditions will lessen.
Share feelings and experiences regularly. Withholding our feelings can cause negative thoughts to fester and can lead to conflict, anger, separation, anxiety and loneliness. By making a habit of expressing feelings before they gain too much negative energy and possibly lead to exaggerated conflicts, we can create an environment of support, caring, sensitivity and thoughtfulness. It’s important to focus on positive outcomes, not blame, intimidation or guilt. Meditation can help here too, in understanding and modifying our emotional tendencies and controlling strategies.
I’ve found the old adage that focussing on other people’s happiness relieves our own suffering to be true. When we’re feeling down, frustrated, inferior or depressed, it’s usually because of focussing too much on our own pleasure or displeasure. Reach out whenever possible and put your energy into helping others.
People need to know that it’s not conceited to feel good about themselves. Let people know that you feel good about who you are. That gives others permission to do the same. This doesn’t mean, of course, that arrogance and conceit are positive attributes. It means that self-acceptance and a non-judgemental attitude reflect a healthy and equality-minded disposition–including toward ourselves.
The people in your life should reflect the rich diversity that is available to us in this world. In recognizing a wider band of what is “acceptable and positive,” you will be more likely to find yourself within that band. Again, it’s important to challenge old, and sometimes well-ingrained, attitudes, beliefs and values. By more deeply understanding their origins, we can clearly see how they negatively effect the quality of our relationships, our emotional state, and our perceptions of self and the outside world.
Do you often point out people who are “good looking” or who have flawless bodies? Do you make negative comments about people who are not beautiful? Do you comment on the physical beauty of celebrities? Every time you do, you are, in effect, saying “physical perfection is all that matters in this world.”
Try not to engage in conversations that promote judgement of others. By taking a different course, we can positively effect our attitudes and our feelings towards others. When negative thoughts enter your mind, try to replace them with positive ones and see what happens.
In a similar vein, rather than identifying people by race, hair colour, height or weight, try finding some other way to describe a person. Maybe a person can be defined by something he or she has done or by some personality trait or by a particular talent.
Try to notice how you describe and feel about yourself as well. Do you have old negative ideas about yourself that seem resistant to change? We all do. This is rich material for us to work with in order for us to become more self-accepting and, by extension, more accepting of others.
This is the freedom to make appropriate decisions, take appropriate risks and foster a sense of competency. Let your own accomplishments give you a sense of worth and personal value. By fostering independence and autonomy, we can also create more inclusive and welcoming communities. Autonomy does not necessarily mean separation. Think of it as independence within community. We need to work together, to collaborate, to create, to encourage, to love. When we do, we create inclusive communities that welcome the important and valuable assets we all have to offer.
A support group will give you access to kindred spirits where you discuss some of the issues that only another who has “been there” can truly understand. However, don’t isolate yourself from a variety of individuals with a wide array of experiences. Everyone has something we can learn, benefit from and be inspired by.
If there are things about yourself you would like to change, concentrate on those that are within your control. Don’t spend time and energy wishing you were taller or had smaller feet. Instead, spend time working on things you know you can change.
Life is too short to waste time and energy on things that promote negative states of mind. There are times, however, that we need to fully investigate and more deeply understand our negative thoughts and self-injuring behaviours so we can get past them. Guidance from an experienced therapist or teacher can help us change ourselves with patience and sensitivity.
Job: Administrative Director Pet: Bailey, family cockapoo from the SPCA How I pass time in a waiting room: looking for missing apostrophes in posters #1 world issue: soil erosion and factory farming #1 disability issue: lack of a Canadian mental health strategy What I’d bring to a potluck: I’d bring roasted beet, orange and goat cheese salad Favourite Sunday morning: the best Sunday morning is Christmas morning, but newspapers, waffles, and strong coffee at home is a close second Pet peeves: people washing driveways and putting grass golf courses in the desert
I’ve had a longtime fascination with “leadership” and have spent some time considering how leadership plays out in everyday life.
I would argue that we are all leaders in one way or another. This “personal leadership” is reflected in living life with integrity–according to our values and priorities. I also believe that people with disabilities or chronic health conditions are propelled into leadership by virtue of being different in some way from others in the mainstream. Different perhaps because of our appearance, but certainly different because of the challenges we encounter along the way.
Personal leadership develops when we face a hill in life and pause to consider how to go forward. In that pause, when we (sometimes desperately) look around to find a path or at least a signpost, we recognize leaders as the people who travelled before us and now share what they’ve learned along the way.
The leadership I describe offers extraordinary strength not only to those at the bottom of the hill.
Most of us have stories to tell about talking to doctors. Often the time you have with your doctor is too short. Here are some tips to get the most from your time.
Originally published in Tips for Living Well newsletter, Winter 2000.
The US Agency for Healthcare Research and Quality website has a helpful booklet called Be Prepared for Medical Appointments: Build Your Question List. It includes sample questions to ask your doctor under the following headings:
Visit: http://www.ahrq.gov/qual/beprepared.htm or call Shelley at 604-875-0188 if you don’t have access to the Internet.
This year, residents at George Pearson Centre are doing something new.
The gardening is part of a brand new project at George Pearson Centre called Farmers on 57th. It’s a partnership between the BC Coalition of People with Disabilities (specifically Community and Residents Mentors Association or CARMA), Vancouver Coastal Health (VCH) and me as coordinator.
On the advice of Pearson social worker Sam Greenspoon, I approached the BCCPD–which responded with interest. They have been actively working within Pearson for several years, helping to promote the care principles of the Eden Alternative (for background information on the Eden Alternative, see http://www.edenalt.org). Christine Gordon and Sarah Wenman worked closely with me to develop a project proposal that would fit well within the Pearson community. Vancity and Canada Trust/TD Bank provided funding and, with VCH’s blessing, the project went ahead this spring.
Already, this community-building is taking off: Pearson residents are gardening their own plots, with the help of their families and volunteer Pearson staff. DIGA (Disabled Independent Gardeners’ Association) is tending 3 plots, in exchange for offering gardening workshops at Pearson. The nearby Sir Wilfred Laurier Annex is tending 3 plots as part of their school curriculum. Neighbours have registered at the Marpole-Oakridge Community Centre to learn to grow their own food at Pearson–and the course has filled up.
>See more on the Farmers on 57th here.
Dan is a volunteer with BCCPD’s Advocacy Access Program. For four years, he has staffed the reception desk–home of the busiest phone in the office. When asked whether his work here contributes to his sense of wellness, he nods enthusiastically and describes the benefits. “The income helps, of course. And the structure … I can plan my life around my work here and have time to do other things. And it provides a sense of self-worth and satisfaction.”
Dan adds that confidence and taking initiative have “extended to my personal life in terms of exercising and diet, taking my meds, and knowing that I’m responsible for my own well-being."
Dan describes a number of things he has learned over the past few years, including the importance of taking initiative and empowering himself. His job can be extremely challenging and he says that he realized that he needed to reduce his hours. “I knew I wanted to work here but didn’t want to burn out.”
Dan adds that confidence and taking initiative have “extended to my personal life in terms of exercising and diet, taking my meds, and knowing that I’m responsible for my own well-being. I don’t want to be a victim, but someone who’s responsible. I’m healthier!”
“Each one of us has the capacity and skills within ourselves to be a leader. But to be a leader, you must believe in and lead yourself first. In finding yourself, you find a way forward. The place I live in is a place of belief ... that every little thing I do will make a difference ... It’s like creating a jigsaw with each piece going toward the picture of life that you want to create. This picture is contributed to by many and is never done alone.”
Excerpted with permission from “Leadership and How to Get there Using the Path of Life” by Sue Egan. E-bility.com June 2003. http://www.e-bility.com/articles/leadership.php. Sue contracted polio at age two and became a wheelchair user following an accident as an adult. She is Executive Officer at Physical Disability Australia Ltd. in Willawarri, NSW, an organization representing people with life-long physical disabilities.
Carol has been involved with the BCCPD since 1990. She began as a volunteer, then was employed as an advocate and now is a volunteer once again. Carol is no stranger to health challenges. When she was in third grade, she had surgery on her kidney and, in sixth grade, surgery for a herniated disc. When she was 14, she was diagnosed with epilepsy and continues to take medication for grand mal seizures. In 1990, at age 34, Carol was diagnosed with Multiple Sclerosis (MS). Since 1999, when I began working at BCCPD, Carol has been an avid consumer of health education and information. Whether seeking information for her clients, herself, or her friends, she has regularly stopped by my desk, asking if I could get her information on different topics, including chronic health conditions, surgeries, alternative health options, medications, and nutrition.
A few days ago, Carol and I had a conversation about HEAL and I asked her when she first recognized her strength as an advocate–for herself and for others. She said, “Advocating? I still have a hard time advocating for myself! But advocating for others and seeing the need started when I began volunteering here in 1990.” Asked how people can best advocate for themselves, she said it’s important to know what your needs are. “You can get so discombobulated by needs … housing, living on a limited income, etc. It’s important to prioritize your issues and tackle them one by one. A lot of people don’t want to be seen as disabled … yes I’m disabled, but it’s not the end of the world.” When I asked about leadership, Carol thought for a minute. “When I think of leadership I think of somebody who’s in power to change things … I think of Mary Williams [a founding member of BCCPD and long time board member until her death in 2001] … board members … people at the grassroots who are there any time of day or night for meetings, to go to Victoria … whatever is necessary to get the word across.” She thought a bit longer and then added, “I think of leadership as mentorship, I guess. Mary Williams was such a hero in my mind.” Like Mary, Carol has a terrific sense of humour. Asked how she stays positive, she says she watches the comedy station and has “two cats that love me no matter what.” Talking about the bad days, she adds, “There’s good and bad to everything … yin and yang. I know when it’s really bad, just around the corner is coming a couple of good days … that keeps me hanging in there.”
“I wouldn’t wish the kind of accident I had on anybody, but what it did for me was give me a kick in the pants. I’m not my spinal cord injury and I’m not my wheelchair. I’m still Mary. I have a great quality of life, not just a good one, but a great one!” Mary Williams was a founding member of BCCPD and a long-time board member. She was left quadriplegic following a motorcycle accident in 1975. Mary was involved in many disability organizations and activities and was awarded a Coast Foundation Courage to Come Back award in 2001. She passed away later that year.
Reform of the EI Sickness Benefit is a key component of the Canadian disability community’s national disability strategy to reduce the level of poverty faced by Canadians with a disability. In March of this year, the Council of Canadians with Disabilities (CCD) appeared before the House of Commons Standing Committee on the Status of Women. CCD called upon the Federal Government to make Employment Insurance (EI) more accessible and inclusive to women with disabilities by expanding eligibility criteria and expanding its coverage. “The Federal Government needs to apply a gender and disability lens to Canada’s EI regime,” said CCD Chairperson, Marie White. “It is a national disgrace that EI excludes some of Canada’s more vulnerable people–older workers, part-time workers, recent immigrants, new entrants to the labour market, low wage workers, women with disabilities and the self-employed.” These people’s employment patterns make it harder for them to accumulate enough hours to qualify for EI. CCD called for a reduction in the number of hours a worker needs to accumulate in order to qualify for EI. Chronic illness is a fact of life for many Canadian women. In 2003, 74% of the female population aged15 and older had at least one chronic illness. * This makes the EI Sickness Benefit very important to Canadian women with disabilities and chronic illnesses. This benefit currently provides only15 weeks of coverage. CCD has been calling upon the Federal Government to lengthen the coverage period to 52 weeks. Reform of the EI Sickness Benefit is a key component of the Canadian disability community’s national disability strategy to reduce the level of poverty faced by Canadians with a disability. Canadians with disabilities are almost twice as likely as non-disabled Canadians to live in poverty. Over one hundred Canadian organizations have signed the End Exclusion National Action Plan on Disability which includes the recommendation to expand the EI Sickness Benefit to 52 weeks of coverage. “Providing support to vulnerable persons should be the Government of Canada’s first priority during this economic downturn,” says White. Visit the CCD Website at http://www.ccdonline.ca. *Women in Canada: A Gender-based Statistical Report (Statistics Canada 2005) p. 54, http://www.statcan.gc.ca/pub/89-503-x/89-503-x2005001-eng.pdf.
In Brief The primary determinants of health are the living conditions to which people are exposed. The quality of these living conditions are shaped by political and economic forces. The decline of support for the welfare state threatens these social determinants of health. Political action is required to strengthen the determinants of population health and to reduce health inequalities.
In Brief
Two primary arenas for action–among others–for health promoters and population health researchers are advocacy and community-based action ...
It also requires explicit recognition of the role political and economic forces play in shaping these policies and the need to confront these sources of power and influence when they threaten health and well-being ...
The best means therefore of promoting health and improving population health involves Canadians–and others–being informed about the political and economic forces that shape the health of a society. Once so empowered, they can consider political and other means of influencing these forces. Health promoters and population health researchers need to “get political” and recognize the importance of political and social action in support of health. This seems a rather daunting task, but one that holds the best hope of promoting the health of citizens in Canada and elsewhere.
Dr. Dennis Raphael is an Associate Professor at the School of Health Policy and Management, York University.Toba Bryant is an Assistant Professor, Department of Sociology at York. Dr. Raphael’s many resources on this topic, including books and video presentations, can be found at http://www.atkinson.yorku.ca/draphael.
In this Transition, we’ve introduced HEAL as a philosophy or framework for wellness. It’s a set of practical and proactive strategies resulting from the work of BCCPD’s Wellness & Disability Initiative, AIDS & Disability Action Program, and Health Literacy Network. The future of HEAL at BCCPD depends in part on you–people with disabilities, caregivers, service providers and health care professionals. Do you have stories to share about your experience with the HEAL philosophy? Is the HEAL model of interest to you and/or your clients? Would you like to hear more about health education, advocacy and leadership as a wellness strategy? I would love to hear about ways that you’ve used HEAL strategies to make a difference personally or for someone you know. What do you need to know in order to begin? How can I help you use HEAL as a tool to improve wellness?
Phone 604-875-0188 (or leave a message at 1-877-232-7400 toll-free), TTY 604-875-8835, email wdi@bccpd.bc.ca, fax 604-875-9227.
Clicklaw is a new website, funded by the Law Foundation of BC, aimed at enhancing access to justice in British Columbia. It features legal information and education designed for the public from 24 contributor organizations–including BCCPD–as well as selected others. Clicklaw’s mission is to provide equitable access to quality legal information, education and help for British Columbians Clicklaw is organized by what brought you to the site. Have a legal problem? You can find practical information about your legal rights and responsibilities, and options to solve legal problems. Looking for legal help? You can access toll-free phone numbers for someone to talk with for legal information or advice, and later this year, you’ll be able to locate those who can help with legal problems on the Clicklaw HelpMap. Want to learn about the law? You can access resources that help you learn and teach about the laws that affect British Columbians and how the legal system works. Interested in law reform? You can access resources that feature reform and research of laws and legal innovations in British Columbia.
Visit Clicklaw at www.clicklaw.bc.ca.
More than 60 people in BC agree and have joined BCCPD’s kindness movement. Call or email for Pay It Forward BC (PIFBC) “kindness cards” and get started. Spend one week counting acts of kindness and let us know how happy you feel.
* K. Otake, et al. “Happy People Become Happier through Kindness: A Counting Kindnesses Intervention” Journal of Happiness Studies 2006 September; 7(3): 361–375. Available at: http://tinyurl.com/djfwq2.
Pacific DAWN strongly agrees with the international disability slogan: “Nothing About Us Without Us.” We believe that only women with DisAbilities know their own situation, and we should have control over issues, written materials and research affecting our lives. Too often we have been the subject of research, and are used for our knowledge without any control of what is produced or any compensation.
Our current focus is on violence experienced by women with DisAbilities. It is estimated that 83% of women with DisAbilities will be sexually abused in their lifetime, 53% of women with DisAbilities (from birth) have been raped, abused or assaulted and it is estimated that 42% of them have been or are in an abusive relationships. Currently there is no registry of women-serving organizations that are accessible to women with DisAbilities.This is one of the problems that Pacific DAWN hopes to rectify along with developing training, resources and protocols for working with women with DisAbilities.
Please see our web site www.pacificdawn.ca to learn more, sign up for our newsletter or become a member or email me pkelln@telus.net.
Over the last few months we have received an increasing number of calls from people asking about the Registered Disability Savings Plan (RDSP). This new Help Sheet outlines the main requirements and restrictions of the RDSP and the Disability Tax Credit (DTC) which applicants for the RDSP must first qualify for in order to access the new program.
See this section for additional articles, links and information not published in the print version of Transition editions.
I’ve been working toward wellness for the past 14 years. My recovery journey began after I was given a diagnosis of schizophrenia at age 19. I had been a top student throughout high school, but in grade 12 started hanging out with the arty, party crowd. This led to substance use and my mental illness. I was hearing voices and seeing things that weren’t there, so couldn’t work....[More info click here]
Dr. Dennis Raphael of York University has done extensive work on population health. You can see a new video presentation by Dr. Raphael, "The Politics of Population Health" by following this link. [Link to video here] There are also many other resources on his site, including articles, books and more.
Editorial Statement The views and opinions expressed within the pages of Transition are not necessarily those held by the total membership or Board of Directors. The material presented herein is meant to be thought-provoking and to promote dialogue. Transition is a forum to share information within the disability community, and with government and the general public. It is also an opportunity for people with disabilities to display creative talent.
Disclaimer Any firm or company advertising in Transition is for our readers’ benefit and does not constitute an endorsement by the BCCPD.
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Our 2012 CPP Series guides are now available in English, Punjabi and Traditional Chinese.
How are we doing? Send us your feedback on BCCPD.
See our multilingual publications .
9-1-1 and You
Be Prepared
George Pearson Centre, gardens, orchards....find out about a wonderful new project here.
See our Disability Benefits Help Sheets , including new Chinese and Punjabi translations.
BCCPD Online
Open an RDSP
The Registered Disability Savings Plan can benefit people regardless of their income. Learn more.