Summer 2010 Finding Your Path Adjusting to Change
Read more Transitions Subscribe See our ad rates Support Transition
Acknowledgements
FEATURES
Editorial by Sarah Hamid-Balma
Finding Principles To Live By by Leslie Timmins
Powerful Responses to Change
Surviving Change: Five Tools for Resilience by Shelley Hourston
Cuts to Provincial Benefits by Robin Loxton
How to be in Solidarity with Me by romham gallacher
Accepting Limitations Doesn’t Mean Giving Up by Leslie Timmins
Adjusting to Acquired Brain Injury by John Simpson and Carol Paetkau
OTHER
New Partnership in Emergency Preparedness
Jean Swanson Wins Award
New Personal Supports Project is Growing and Learning by Christine Gordon
We Want Your Photos!
Canada Ratifies UN Convention by Council of Canadians with Disabilities
Accessible Garden Plots Available
Keep in Touch
SPECIAL
HEAL Guides
Recent Changes to Our Canada Pension Plan Program by Jane Dyson
Why You Should Open an RDSP
by Sarah Hamid-Balma The process of coming to terms with disability is an ongoing negotiation. You ask questions like, “What does it mean?” and “Who am I?” and “How will I cope?” And then you realize these disability-adjustment questions are the same as, well, life questions.
The word disability is often used as if it’s a fixed, unchanging thing. But those of us who live with them know they’re much more fluid than that. Disabilities and chronic health conditions change. As we age and grow, and our families change, our disabilities feel different to us and have different effects on our lives. Technologies and treatments help us do more and/or create new problems. Our disability may improve or we may go on to develop more than one disability. Adapting to a disability isn’t just a one-time affair either. The process of coming to terms with disability is an ongoing negotiation. You ask questions like, “What does it mean?” and “Who am I?” and “How will I cope?” And then you realize these disability-adjustment questions are the same as, well, life questions. The journey is an individual one. And responses to disability are as diverse as disabilities themselves. You may experience a disability, even before you know its name. The diagnosis can become both relief and curse, as I often see in my work with people with mental illnesses. The reverse may also be true. You may be diagnosed before you feel symptoms and have to adapt to waiting for future losses. Or you may develop a disability as a result of trauma and have to reconcile that accident or event into the narrative of your life. Your condition may be episodic, so you have periods of wellness, plus the threat of relapse. Or it may be always there, a persistent presence or one that gets worse. You may have been born with your disability and find yourself adjusting to the could-have-been’s as you compare yourself and your abilities to your peers. More commonly, you are an adolescent or adult when you acquire your disability and you find your life cleaved into “life before” and “life after.” Regardless of how your disability came to be, there is grief and loss. It may be brief or prolonged, but it’s nearly universal.
Moving to acceptance is the hard part–moving from “Why me?” to “What now?”, as my colleague used to say. Acceptance of our disability doesn’t mean we’re necessarily happy that we have it, but that we start to adapt to new roles and activities.
Don’t underestimate how emotionally, mentally, physically and spiritually taxing grief can be. Not everyone grieves the same way, but it usually begins with shock and numbness. We can’t quite process the news or the implications. Denial comes next. Unless we get stuck there, denial is protective. It’s like a filter that helps us adapt to the impact slowly. This period can last weeks or months and is often filled with a lot of anxiety, both physical sensations and “What if I can’t…?” and “How will I ..?” thoughts. Anger and depression usually follow as we become more aware of how the disability will affect our social status, our ability to work, our income, our relationships, our sexuality, our spirituality and our identity. And we may struggle with who to tell, particularly with more invisible disabilities. We may start to fully understand the absence or limitations of treatments and technologies, and feel more hopeless, more withdrawn, more irritable. It’s not uncommon for people with a disability or chronic health condition to develop a clinical depression or anxiety disorder triggered by stress. (But common doesn’t mean natural. Please seek help if depression or anxiety become disabling).
BACK TO TOP
Moving to acceptance is the hard part–moving from “Why me?” to “What now?”, as my colleague used to say. Acceptance of our disability doesn’t mean we’re necessarily happy that we have it, but that we start to adapt to new roles and activities. Our energy slowly shifts from focusing on the problems to focusing on the solutions, from despair to action, from loss to living. The disability slowly takes up a bit less of our identity–we remember other roles, other definitions. Or it becomes a force for change: we might become advocates or support others. We get back into life. It doesn’t happen overnight or even completely. And it’s not a linear path. Just as in life, expect to experience grief more than once. Or depression. Or anger. But also expect to feel the arc of well-being and resilience and acceptance more than once, too. I have lived with mental illness for more than half my life. Sometimes I considered it a psychiatric disability because it impacted my life that much. It took many years–and I’m still working on it–to cope with the self-blame, guilt and anger associated with the identity. Now, it’s a small part of who I am and, more often than not, I can see my condition, my disability, as more of a strength than a limitation. A badge of honour, even. It’s been said that if all of us put our problems in a pile in front of us on the sidewalk and had a rummage sale, we would look at our neighbours’ piles and choose to take our own pile back. I think it’s true. I would choose my disability over some other kind of adversity. I know it well. I’m an expert on how to cope with it and live a full and rich life. And it’s taken a lot of transitions to get to a place where I can say that. This edition of Transition looks at change and resilience. Change can mean we have to learn a completely new way of doing things or that we no longer do something that was important to us. But, as you’ll see from the articles in this edition, it can also lead to growth, born out of strength and creativity.
by Jane Dyson
In January, the Ministry of Housing and Social Development (MHSD) told us it would not be renewing the contract for our CPPD services because of its budget challenges.
BCCPD experienced a major setback when we lost the funding from the provincial government to fund our Canada Pension Plan Disability (CPPD) Program on March 31st, but there is hope around the corner for a smaller CPPD program at the BCCPD. Our CPPD Program had been funded by the provincial government since the early 1990s and, over the years, we have assisted thousands of people with disabilities to access CPPD. In January, the Ministry of Housing and Social Development (MHSD) told us it would not be renewing the contract for our CPPD services because of its budget challenges. The MHSD stressed the decision was no reflection on our work. In spite of meetings with Minister Rich Coleman and Assistant Deputy Ministers, and the fact that we save the Ministry hundreds of thousands of dollars through our work, we were not able to reverse the decision. In late June, the Law Foundation of BC informed us they will provide temporary funding to restore part of our CPPD advocacy services. Thanks to their generosity, we now have temporary funding to assist people with disabilities who need our help with CPPD referral resources, applications and appeals. There are very limited resources in the community to assist people one-on-one with accessing CPPD benefits and we thank the Law Foundation of BC for this opportunity. Our CPPD assistance manuals will also be kept current through our website and the Law Foundation’s Clicklaw site. These are challenging times for our community and there have been other cuts to important services. For example, the Fraser Health Authority has cut the funding for the Chimo Achievement Centre, resulting in its closure. For 26 years, Chimo offered support for people with disabilities, helping clients to maintain their independence and providing day respite to their families. We are working on creative solutions to restore a full CPPD program at the BCCPD, building on the funds provided by the Law Foundation of BC. You can still count on the Advocacy Access Program to provide assistance with provincial disability benefits, medical goods and services, and applications for BC Housing. A sincere thank you all the staff, volunteers and clients who have made our CPPD Program so special. We look forward to a time when all people with disabilities have full access to a wide range of income supports and necessary community services. Jane Dyson is BCCPD’s Executive Director
Visit our CPPD Program page.
For people who are eligible, the new Registered Disability Savings Plan (RDSP) is a valuable tool to help save for the future–even if you are receiving social assistance or living on a low income. There are many incentives to open an RDSP, including generous grants and bonds available from the federal government. What does this mean exactly? For example, if you’re 32 years old, have a low income, and deposit your $250 GST cheque into an RDSP account every year, when you’re 60 you will have over $100,000 because of the grants and bonds program, and accumulated interest. And, any money in an RDSP will not affect your social assistance benefits. If you receive an inheritance, ICBC settlement, or want to receive government grants and bonds, this money can be put in an RDSP and exempted as an asset by the Ministry of Housing and Social Development.
Thanks to funding from the Law Foundation of BC, BCCPD has completed a special project to provide free community legal education about the new RDSP for people with low incomes. We recently trained 60 community workers on how to assist people with setting up an RDSP. In June, we also completed a 50+ page guide, a Powerpoint presentation and four short videos. And, our RDSP Help Sheet has been updated in English and Traditional Chinese. All our free RDSP materials–and information on how to get an RDSP Kit for your organization–are available at www.bccpd.bc.ca/rdsp.htm.
Through a partnership with Planned Lifetime Advocacy Network (PLAN), we can provide one-to-one assistance to people interested in the RDSP. We can help you over the phone, by email or in person. You can ask questions, decide if the RDSP is a good fit for you, and learn about the eligibility requirements and how to open an account. Please call 604-872-1278 or 1-800-663-1278 or email rdsp@bccpd.bc.ca if you’d like individual assistance. PLAN is also hosting community workshops across the province. Visit www.forthefuture.ca for more information.
by Leslie Timmins “Even before the accident, I knew it could happen to anyone, anytime. But the first time the Occupational Therapist at GF Strong took me to the cafeteria and I saw people through the window walking around and driving cars, I cried. I wanted to be independent. I cried a lot.”
Juanita Ibanez is a soft-spoken woman originally from the Philippines. She moved to Hong Kong to work as a nanny and domestic worker. When her employer sponsored her to move to Vancouver, she continued that kind of work and then went on to be a care aide. Three years ago, Juanita broke her neck falling from a ladder. The process of adjusting to the changes brought about by the C5 spinal cord injury has not been easy. But, “Slowly, slowly,” Juanita says, “I adapt.” “Even before the accident, I knew it could happen to anyone, anytime. But the first time the Occupational Therapist at GF Strong took me to the cafeteria and I saw people through the window walking around and driving cars, I cried. I wanted to be independent. I cried a lot.” Juanita tried to hold on to her independence in whatever way she could. “At the hospital, I wanted to do things myself. I refused to use a plate card to stop food from spilling. I tried my best not to spill and to use the adapted utensils. When you do things yourself, you get very tired just picking up or moving things. It’s difficult, but now I try day by day to learn to do something new with my arms. It’s a little bit frustrating.” A surgery on the tendons in her right forearm improved the grip of her fingers on that hand. When asked what else helped her through the early stages of recovery, she mentions the BC Coalition of People with Disabilities’ Community and Residents Mentors Association (CARMA) group. “They gave me very good support, lots of encouragement. They said, ‘Don’t worry about everything. Keep up your activities, do your rehab. There’s nothing impossible. You never know what may happen.’” And, “all of the medical staff and services at GF Strong, George Pearson, I’m very grateful to them. Now I’m living in my own apartment since the end of January. I like it a lot.” In the years following her injury, Juanita’s faith has given her comfort and strength. “I entrusted it to God,” she says. “An accident can happen to anybody. And it could be my plan to be in this chair, God’s plan. I pray that I accept it.” “But it’s not all about faith, you know,” she adds. “It’s about being good people. Although some people don’t have any religion, they’re good people because they have good principles.” Juanita turns to prayer, and to her doctor, for pain relief. The pain and numbness along her arms and shoulders caused by damaged nerves from the accident is constant. Medication, so far, isn’t doing enough. The principles and beliefs Juanita had before the accident, have helped her cope with the changes that came after. One of these principles is to avoid envying other people, to avoid comparing her life to others. “We never know the inside of people lives,” she says. “A family may seem like they have no problems, but that’s only from the outside. Everybody has problems. Financial, legal, spiritual. It all depends on how you manage your life and difficulties.” Social connections are a vital support. “My friends remind me, ‘None of us knows what’s going to happen any minute.’” And while she doesn’t have any relatives in Vancouver, Juanita has lots of friends, including in her church. Friends visit, cook for her, look after her clothes, help with money. They also help keep her spirits up with inspirational thoughts, like remembering to hope for the best. “Making more friends makes me stronger,” Juanita says.
“We never know the inside of people lives,” she says. “A family may seem like they have no problems, but that’s only from the outside. Everybody has problems. Financial, legal, spiritual. It all depends on how you manage your life and difficulties.”
She has also resumed an old–and joyful–habit. “Before the accident, I used to take the bus–I called it my joy ride. After work, I’d take a bus and go all the way to the end of the route and come back. “I can still go outside, see places. I can go to the thrift store and get knickknacks. I go for a joy ride with a friend out to the University of BC. Sometimes I’ll go to Aldergrove, White Rock or Richmond. Lots of people know me because of the bus. “My friends say, ‘You ask Juanita, and she knows where it is!’” Another principle Juanita tries to live by is not to be bothered by other people’s opinions. “I know what is right and wrong. We know best ourselves.” Riding the bus may bring joy, but not being able to fly–to go to the Philippines to see her mother–is a hard reality to live with. Juanita used to see her family regularly, but now she can’t travel alone. She would need a companion to help her eat and to manage her self-care. Technology eases the sadness of this a little: Juanita’s mother texts her every day. Technology also brings the world into Juanita’s apartment. The Internet feeds her interests and curiosity. “I like to look at YouTube. I take tours, search for information. Google Earth is fun–you can go and see the world. I love songs, too, lots of kinds of music. And inspirational sayings and stories.” There doesn’t seem to be an end in recovery and adapting for Juanita. “I’m still learning day by day what is good for me,” she says. “In the future I may volunteer, make use of some of my time. But it takes time to know what to do.” Although she doesn’t have the answer yet, she’s very clear on her principle for finding the right volunteer job. “I have to love it,” she says. “I don’t want to do it if I don’t love it.” Leslie Timmins writes poetry and short stories, and articles on health and the environment for magazines across Canada.
The BC Coalition of People with Disabilities (BCCPD) and Volunteer Canada have formed a new partnership to bring volunteer centres and disability organizations together to collaborate, create and deliver community training on emergency preparedness for people with disabilities across Canada. According to the Canadian Disaster Database, there has been a significant increase in the number of Canadians affected by natural disasters. In addition to this, an increasing number of Canadians are reporting having a disability. However, the majority of local, provincial and federal emergency planning in Canada does not take into consideration the needs of people with disabilities in disasters. Community-based organizations that serve and work with individuals with disabilities can play a significant role in emergency preparedness and response. Over the next two years, members from the voluntary sector and the disability community across Canada will be trained in innovative approaches to emergency preparedness that focus on addressing individual functional needs, supporting social networks and capacity building. The community workshops will provide community-based organizations with tools that will help them identify vulnerabilities, strengthen community resiliency and increase the safety and well-being of people with disabilities and the communities they live in. This project is funded by the Government of Canada’s Social Development Partnership Program – Disability component and builds on the previous emergency preparedness and community resiliency work done by the BCCPD in British Columbia and Volunteer Canada’s project with the voluntary sector across Canada. For more information contact Karen Martin, Project Manager, at BCCPD 604-875-0188 or karen@bccpd.bc.ca. Learn about BCCPD's Emergency Preparedness Projects.
by Diana Cikes
“Everything changed after that. Once I started helping others, I started finding a lot of the answers I was looking for.” She experienced the power of helping others and the healing that comes with sharing her experiences.
Change has a funny way of sneaking up on us. We can dream about change, crave it or even fear it. But sometimes, the most positive changes in life happen purely by accident. At the age of 43, Terri was diagnosed with a chronic heart condition. Soon after, she found herself on a “never ending merry-go-round of up and down days” as she struggled to cope with her new-found limitations. “No matter how hard I tried, I couldn’t find the right routines to keep me from gaining weight and staying physically fit. I couldn’t run and play like I used to and I just couldn’t find the motivation to join a gym. I was also scared to death I would do something wrong and fall over dead.” Although Terri was surrounded by the support of family and friends, she felt alone in her experience. “I had no friends experiencing the same problems and, for the most part, they were offering their sympathy, not any solutions.” In an attempt to take back control of her life, Terri volunteered to be a participant in a self-management workshop for chronic disease patients. To her surprise, she had accidentally volunteered to lead the workshop. “Everything changed after that. Once I started helping others, I started finding a lot of the answers I was looking for.” She experienced the power of helping others and the healing that comes with sharing her experiences. Terry has now become actively involved in the Patient Voices Network, an innovative new program that is connecting patients to BC’s healthcare system. The Network is a unique opportunity for patients to take an active part in shaping the health system, so that it reflects the needs and interests of patients themselves. Brian is also using his own experience as a patient to speak out and help make a difference in his community. He underwent back surgery that left him with considerable nerve damage. Before the procedure, he was advised to quit smoking which proved to be a very difficult habit to break after 25 years. “I can clearly see where Patient Voices Peer Coaches could have helped me overcome my difficulties in trying to quit smoking, lose more weight for more optimum healing of the back surgery and live a less stressful life…” Brian was drawn to the Patient Voices Network because of the “great opportunities for making a difference in people’s lives that have come to the realization that they want to make some lasting lifestyle changes.” He is now training to become a Patient Voices Network Peer Coach, so he can use his own experience with a disability to help others manoeuvre their way through making difficult lifestyle changes. Jim recently joined the Patient Voices Network after his experiences with a chronic seizure disorder led him to seek ways to improve a system that hasn’t always served him well. “I became involved with the Network because I do believe we need to make changes in the system... I hope others can learn from my experience and I can learn from theirs.” From being wrongly diagnosed to lacking sufficient medical coverage, Jim understands what it’s like to be sick, alone and frustrated by a lack of support from the health system. A new culture of change is forming as more patients like Terri, Brian and Jim join in this movement towards organized patient action. They are each doing their part to give patients in BC a stronger, unified voice in the system. What can you do to give our voice more power, so that we can all get the health care we need? The Patient Voices Network offers opportunities for everyone to get involved in shaping BC’s primary healthcare system. Visit www.patientvoices.ca or email connect@patientvoices.ca to learn more about the Network and options for how you can participate.
Each of our perfect souls Are meant to be around We all have purpose A necessary path
BCCPD’s HEAL project has published five new HEAL (Health Education, Advocacy, and Leadership) guides. Available on our website from our Publications page, the first five titles in the HEAL series are:
HEAL Guides provide information from experts and researchers, as well as people living with chronic health issues and disabilities. They offer a selection of short “keys:” facts, research findings, experiences, perspectives and insights about living with one or a combination of chronic health conditions or disabilities. Most keys are one paragraph or two at most. You can begin with any key that interests you or read the Guide from beginning to end. And, the source for most keys can be found in the Resources section at the end of the Guide. Additional articles, books and websites are included in the Resources. The Guides contain live links, so you can jump to related webpages when reading Guides on your computer. If you don’t have access to the Internet, contact Shelley at BCCPD to have a copy mailed to you. Phone 604-875-0188 in Vancouver or toll-free 1-877-232-7400 or email wdi@bccpd.bc.ca.
Or, read us online, so you can find articles you want easily and link to any resources or websites we mention in Transition. You’ll still be able to download a PDF version, too.
And, if you still want to receive Transition by mail, that’s ok too.
The Cerebral Palsy Association of British Columbia (CPABC) has made a generous $1,000 donation towards BCCPD’s emergency preparedness work. The CPABC has been a member of the Emergency Preparedness committee since its beginning in 2006. Our thanks for their support.
In our Winter 2009/10 Transition, we included an incorrect byline. “Follow the steps 1” was written by Dr. Michael Mandrusiak, R. Psychologist.
by Shelley Hourston It’s not so much that we’re afraid of change or so in love with the old ways, but it’s that place in between that we fear . . . . It’s like being between trapezes. It’s Linus when his blanket is in the dryer. There’s nothing to hold on to. –Marilyn Ferguson (1938-2008) American author and speaker Resilience–successfully coping with change–is a topic that has long fascinated me. According to the American Psychological Association,* resilience is “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of stress–such as family and relationship problems, serious health problems, or workplace and financial stressors. It means ‘bouncing back’ from difficult experiences.” I’ve interviewed a few dozen people over the past few years about their tips for navigating change and found some recurring themes. People described the value of a good support network, the importance of adopting a positive perspective and the need to believe in yourself. Self-awareness and self-care were common suggestions, and many said that a sense of humour and self-compassion were vital. Despite my resilience research, when faced with change, my reaction tends to be more like a “deer in the headlights” than a calm, prepared change warrior. I know that I have been resilient in my life, but that knowledge isn’t especially comforting when I’m facing a brand new challenge. Perhaps what I need is a toolkit–maybe a big hammer–that I can carry to make me feel stronger while facing change. As Sarah Hamid-Balma so eloquently describes in her editorial, for those of us with disabilities or chronic health conditions, coping with change is part of the package. However, the recurring need to adapt and fine-tune our sense of self and our lifestyle can make us tired and feel unprepared to face change when it appears in other parts of life–work, community, family, etc. To be honest, carrying a large hammer can be exhausting and so I began looking for tools with less weight and more precision.
Despite my resilience research, when faced with change, my reaction tends to be more like a “deer in the headlights” than a calm, prepared change warrior. I know that I have been resilient in my life, but that knowledge isn’t especially comforting when I’m facing a brand new challenge. I’ve come across a few options that you may find useful too. If you have others to share, please let me know. If you are unable to access the Internet and these resources, let me know and I will send you a copy.
Change is stressful for most of us. For short, practical articles about stress management, including a “stress diary” to help identify your common stress triggers, visit the MindTools website at: http://tinyurl.com/2gp7k2. Two strategies that I’ve found helpful include imagery or visualization and progressive muscle relaxation.
Most of us think of problem solving as identifying all of the solutions we can think of–maybe three or a half-dozen at most. Then we eliminate the ones that don’t seem feasible and settle on what we see as the most promising option. One thing I’ve noticed, though, is that there are always options that I failed to see. The MindTools website offers some helpful suggestions for getting all of the information possible from the facts you have, ways to get to the root of a challenge, tools to explore causes of the problem, and techniques for risk and “big picture” analysis. To learn more, visit http://tinyurl.com/oerysp.
Periods of change or transition can make you feel as if your life is off course. Finding a new direction and building a new life plan can feel more manageable, if you know about effective goal setting. Read about the “five golden rules” of goal setting, a technique called backward goal-setting or backward design, and tips for setting achievable life goals at http://www.mindtools.com/pages/main/GoalSetting.htm.
Some of the recommended ways of increasing self-confidence include taking stock of what you’ve already achieved, making a list of your strengths, identifying what is important to you and what you would like to achieve, and reducing negative self-talk. (MindTools http://tinyurl.com/2by667) Sounds easy doesn’t it? However, we all know that it’s not and that self-confidence and self-esteem take a beating when you live with disability or chronic illness. We also know that the strategies I’ve mentioned so far can be difficult to use when self-confidence and self-esteem are low. One of the most helpful and practical resources I know of is Building Self-esteem: A Self-help Guide by Mary Ellen Copeland (http://tinyurl.com/yarb75u). Copeland lists things you can do right away–every day–to raise your self-esteem, such as: paying attention to your own needs and wants, taking very good care of yourself, taking time to do things you enjoy, getting something done that you’ve been putting off, doing things that make use of your own special talents and abilities, dressing in clothes that make you feel good about yourself, giving yourself rewards, spending time with people who make you feel good about yourself, displaying items that you find attractive or remind you of happy times, learning something to improve your skills, doing something nice for another person, and treating yourself well every day.
It’s easy to find suggestions for coping with change. The secret is to take action and try something when you’re in the midst of change. Author M.J. Ryan** describes “change sinkholes” as attitudes or habits that prevent us from moving forward. They include getting hung-up in denial, becoming immobilized by fear or shame, focusing on the problem instead of the solutions, using only solutions that we’ve tried and found successful in the past, and “yes, but”-ing all options in view. For those days when life seems to be complete chaos, Ryan suggests asking yourself “What am I free to do right now?” Another very effective way of taking action that is certain to shift your focus and mindset is also on Ryan’s list of quick tips: offer a hand or an ear to someone else. “When we focus on someone else’s problems, we put our own in perspective.”***
The world is round and the place which may seem like the end may also be the beginning. –Ivy Baker Priest (1905-1975) American politician
I’ve noticed that the people who seem to manage best–the people who live fulfilling lives despite their illness or disability–are those who become proactive. They have a toolkit that includes knowledge about their disability or illness, skills to advocate for themselves and others, and leadership qualities that channel their experience and knowledge to shine a light for others. At BCCPD we call this HEALing (Health Education, Advocacy, and Leadership). Although change is indeed inevitable and constant as the adage goes, there are tools that can help us stay afloat. Once we feel able to stop struggling and look around, we usually notice that what was once panic has become resilience. * American Psychological Association. The Road to Resilience. http://www.apa.org/helpcenter/road-resilience.aspx. ** M.J. Ryan. AdaptAbility: How to Survive Change You Didn’t Ask For (New York: Broadway Books, 2009) [Google preview available at http://tinyurl.com/2fvry4x] *** M.J. Ryan. AdaptAbility: How to Survive Change You Didn’t Ask For (New York: Broadway Books, 2009). Excerpt: “20 Quick Tips for Surviving Change” available at: http://tinyurl.com/29rx2ny. To learn more about HEAL (Health Education, Advocacy and Leadership), see Transition (Summer 2009) at: http://www.bccpd.bc.ca/transsummer09.htm. To read about connecting with your community, see Transition (Winter 2009) at: http://www.bccpd.bc.ca/transwinter09.htm. Shelley Hourston is Director of BCCPD’s Wellness and Disability Initiative
What are you up to this summer? Do you like taking photos? We’d love to publish your pictures in a future Transition–either in print or online. Email us your photos, along with a short caption and your name, and you may see them in Transition. Please send photos, in high resolution .jpg format if you can, to: trans@bccpd.bc.ca.
Photo by Tom MccGrego
by Council of Canadians with Disabilities Congratulations to CCD for their work on this landmark convention. Joy and celebration are the two primary emotions felt by many Canadians with disabilities as the Government of Canada ratified the Convention on the Rights of Persons with Disabilities (CRPD) at the United Nations. In March, Canada pledged to be governed by the CRPD, the newest international human rights treaty which boldly articulates a human rights framework for addressing the exclusion and lack of access people with disabilities have encountered in Canada and in all societies. The dream of a more inclusive and accessible Canada motivated Canadians with disabilities and the Government of Canada to engage in a five-year process to create the CRPD. The Council of Canadians with Disabilities (CCD) applauds the Government of Canada’s leadership during the drafting and its steadfast commitment to a CRPD that is built upon Canadian values of equality, non-discrimination and the duty to accommodate. The CRPD is a product of a historic partnership between the global movement of people with disabilities and their governments. Many in the Government of Canada championed the cause of the CRPD, including the Hon. Peter MacKay and the Hon. Diane Finley, as well as Steve Estey, Chair of CCD’s International Committee and Anna MacQuarrie of the Canadian Association for Community Living (CACL). “Today’s ratification by the Government of Canada signals the end of an era where people with disabilities were seen as objects of charity and passive recipients of rehabilitation and state-supported largesse,” stated Estey. “The CRPD is not simply another well-intentioned declaration without any teeth. It requires the Government of Canada to act and monitor progress in achieving the commitments of the treaty. Canada’s actions to create a more accessible and inclusive society will be the subject of both domestic and international scrutiny,” said Marie White, National Chairperson of CCD. For more information contact: Laurie Beachell, CCD National Coordinator –Tel: 204 947-0303 or go to www.ccdonline.ca.
Cottonwood Community Garden will have 59 plots available soon in their new expansion which will be fully accessible for people with disabilities. The raised beds will have water access by the beds, with taps at a reachable height. The paths will be firm, even and wide enough for a person using a wheelchair, walker or cane. The toolshed and meeting areas will also be accessible. Cottonwood features a magical 4 acre forest-like setting with large communal areas which include apple, plum, pear, sour cherry, persimmon, Mulberry, fig, and Asian pear trees; raspberries, blueberries, grapes, Kiwis, currants, gooseberries; a native garden; an Asian garden; permaculture garden; youth garden; perennial flowers and shrubs; eight types of bamboo; nut trees, and many ornamental trees and shrubs. There are two solar greenhouses, toolsheds, beehives and a pair of nesting bald eagles. Everyone is welcome! Cottonwood Garden is located in East Vancouver, along the south side of Strathcona Park (Strathcona Park is on Prior, between Main and Clark). Please call 604-608-0384 for more info.
Photo by Beth MacLaren
Each year the Rosemary Brown Award for women honours a BC woman or BC based organization that promotes the values and ideals that Rosemary Brown championed during her lifetime. The 2010 award recipient is Jean Swanson for more than 35 years of anti-poverty work. Congratulations Jean and thank you for your many years of dedicated work.
by Leslie Timmins Ashley Silcock works as an advocate at BC Coalition of People with Disabilities, helping people navigate government systems and access benefits. “I love it,” she says enthusiastically. “I really like finding loopholes in policy.” Ashley applies the same resourcefulness to find “loopholes” in her disability. She was diagnosed with lupus, a chronic disease, at age 18. Now 26, she says, “I use skills, tricks and tools to get around my disability and find ways to do the things I love.” “But if you take on the role of battling an illness, instead of accepting it, it becomes an internal conflict that takes up a lot of energy and focus. It’s a way for you to demean yourself for who you are.
In lupus (systemic lupus erythematosus), the immune system becomes hyperactive and attacks the body’s own tissues and organs. Symptoms can include severe joint and muscle pain, fatigue and weakness, fever, skin rash, organ damage, among others. Symptoms can change over time, recede and flare up unpredictably. When she was diagnosed, Ashley was planning to go to medical school. “I realized that was not going to be an option because of my symptoms and the stress of school,” she says. “Lupus is a stress-related disability. “I couldn’t just ignore the symptoms and pretend everything was okay, but it was really hard to let myself grieve the loss of medical school. I’ve always had fairly positive self-esteem and all of a sudden I have this disease. But you need to grieve or you let it fester, and that has a horrible impact on your health and your outlook.” A group of friends Ashley met when she moved to Vancouver has helped her accept and creatively adapt to her disability. Some have had health problems for many years. Others are well educated about disability. “They really, really get it,” Ashley says. “At first, I was expecting to be able to do everything that someone without a health problem could do, in the same way and just as effectively. I wasn’t giving myself the accommodation that I needed because, in my mind, that would be admitting defeat. “But if you take on the role of battling an illness, instead of accepting it, it becomes an internal conflict that takes up a lot of energy and focus. It’s a way for you to demean yourself for who you are. What’s helped me the most was reaching the point where I could give myself permission to accept my limitations. I had to separate myself from my own internalized ableism. My friends have helped me with that. And that’s had a positive impact on my health.” Ashley also discovered a touchstone to help her assess and accept limitations. She found it on the Internet in an article called “The Spoon Theory” written by Christine Miserandino who has lupus. “The woman was struggling to describe to her friend what it’s like to live with the disease,” Ashley explains. “Her friend just couldn’t understand why she couldn’t do what she used to be able to do. So the woman grabbed a bunch of spoons, gave them to her friend and said, ‘Here, you have lupus.’” The spoons represent the energy–the very limited energy–a person with lupus has. The woman gave her friend 12 spoons to accomplish everything she needed to do in a day, starting with getting up in the morning, making breakfast, preparing clothes and lunch for work. With each task, one spoon of the 12 was taken away. “If you run out of spoons,” Ashley says, “you’re not going to work that day. Sometimes I just don’t have all of the spoons. The Spoon Theory gave me a visual way to conceptualize my disease.” Accepting limitations, however, doesn’t mean giving up what is most important to her. “My self-care involves making sure I have time to do the things that recharge me,” she says. “If there’s something I really enjoy, like going to see my friends play music, or sitting down and reading a book in a coffee shop, I’ll make time because those things help me manage my stress. “A lot of information you get about health problems is ‘you can’t do this’ and ‘you can’t do that,’” Ashley says. “But I’ve learned from my friends who are brilliant at being creative and finding different ways to do what they want to do.” Over the last year, Ashley’s illness has progressed. Now she can’t sit through a movie at the theatre because of stiffness and soreness. “That sucks,” she admits, “but I’ve figured out some choices. I can watch the movie at home or at a friend’s house where I don’t have to worry about having to sit in an uncomfortable chair. If there’s a movie I really want to see in the theatre, I will go knowing I will suffer, but I’ll pick a day when I don’t have to go to work or do the laundry the next day. And I’ll plan to get there early so I can sit on the aisle and get up and move around without disturbing people. “At first I didn’t think like this,” she continues. “Now I’ve gone through this process of accommodation so many times, it’s a lot easier. When the expression of the disease you have changes, you are constantly learning how to deal with symptoms and live around them. Flexibility and a creative attitude improve my quality of life.” To be young and have lupus, a disease which can be invisible to others, has led to unpleasant confrontations. “When I’ve used accessible seats on the bus, people have yelled at me and demanded I stand up,” Ashley says. “For a period afterwards, getting the bus can be anxiety-provoking.” To keep a healthy outlook, Ashley strives to live in the moment. “Tai Chi gets me moving, gets me out of my head, and helps me focus on today and not on next week,” she says. “It validates my outlook on life, which is to do what I can and not deny myself opportunities. There are things like Tai Chi out there for everybody.” References http://www.lupusuk.org.uk/the-symptoms, Symptoms of Lupus, Accessed April 22, 2010 http://www.healthscout.com/ency/68/118/main.html, Description of Lupus, Accessed April 26, 2010 http://www.medterms.com/script/main/art.asp?articlekey=19101 Definition of antibodies: Accessed April 28, 2010 www.butyoudontlooksick.com, The Spoon Theory by Christine Miserandino, Accessed April 23, 2010
by John Simpson and Carol Paetkau Imagine the shock of hearing that a loved one has been in a serious accident and they have a brain injury. The family rushes to the hospital and is faced with the terrifying image of their loved one lying on a stretcher, motionless with tubes coming and going. No one is clear about what the future holds because nobody really knows for sure. The other extreme is to be told that a family member only has a concussion. The family might breathe a sigh of relief, as the person soon comes home from the hospital. Sometimes family will be given a sheet with instructions, but many times, they will not. No matter what the extent of the injury, family members will go through a period of shock when they first hear that their loved one has an acquired brain injury. Whether the injury is “mild, moderate or severe,” the changes to personality and family dynamics can break relationships apart as the consequences of the injury become apparent over time. Some support strategies that we have seen help individuals and families to adjust to change are as follows:
The person who has had the acquired brain injury will also be in shock. They may deny that the injury has affected them and want to return to their normal lives as quickly as possible. Remember:
In general, the more information people have, the more realistic approach they can take to cope with change and with challenges before they become a crisis. We encourage people to seek out the support and information available, rather than trying to cope with these changes alone. John Simpson and Carol Paetkau are with the Fraser Valley Brain Injury Association.
Do you want to know how to apply for PWD? Are you interested in setting up a Trust? BCCPD’s Advocacy Access Program has 14 Help Sheets explaining various aspects of BC Disability Benefits. All of the Help Sheets are available for download from our website free of charge. We are also happy to mail these publications at no cost to individuals and groups. Also available:
by Christine Gordon The goal of EATI is to help people with disabilities reach their employment or volunteer goals, by connecting them with the personal supports they need.
In the last issue of Transition (Winter 2009), I described the BC Personal Supports Network’s first project, the Equipment and Assistive Technology Initiative–otherwise known as EATI. BCPSN is a Network of organizations who want to improve access to personal supports for people with disabilities–everything from equipment and assistive devices to sign language interpreters and attendants. The goal of EATI is to help people with disabilities reach their employment or volunteer goals, by connecting them with the personal supports they need. The Network officially began EATI in October 2009, so the initiative has just passed its six month mark. It has been a hectic time and a steep learning curve for all the members of the Network, but we are beginning to consolidate our knowledge and mark the way forward. Here are some of the things that we have learned over the last six months:
As a child, you may have played the game of broken telephone, where a message is passed from person to person through a long chain of people. The end result can be wildly different from the original message. Effective communication is the art of overcoming the broken telephone effect. In the first six months of EATI, we have also had to overcome the fact that the Network had to change its message several times because, in partnership with government, we are creating the program as we go. This means that, each time we learn something that will make EATI better or more responsive, we try to incorporate it into the policy and procedures of EATI. This is good policy, but it plays havoc with our communication plans. Our Network Coordinator, Paul Gauthier, has tried to manage all of the new information and correct the misinformation, as we have slowly rolled the publicity about EATI out to the public. You can now visit a website where the latest word about EATI will be posted (www.bcpsn.org). And, the Network will continue to let people know about how EATI really works.
We are committed to this model which is a person-centred approach that puts the needs of each person first. However, it is a challenge to work without an approved list of equipment and assistive devices. This compels everyone to learn that the solutions to functional barriers to employment-related goals can be as varied as snowflakes.
The Network’s EATI super navigators are located in Vancouver, Victoria, Nanaimo, Prince George and Cranbrook. Each super navigator handles applications for their region, as well as applications from other areas of the province. This means that they may never meet in person some of the individuals they are serving. Verifying identification, getting consent forms completed and requests for service fully documented relies on an effective communication process, so there have been lots of hiccups as we deal with a complex geography and the virtual electronic world.
The EATI application process involves a number of steps that begin with the completion of a personal strategy. This describes how an individual plans to reach an employment or volunteer goal by using equipment or assistive technology to overcome a functional barrier. Although the personal strategy tool is a simple one–it has only three questions–a lot of thought goes into it. Individuals need to think about their goals, functional barriers and possible solutions, in order to find what will work for them. Usually they will have to consult with other people, beginning with peers and moving on through consulting experts in their particular functional area in order to come up with a strategy. It can take several weeks to work all this out and finally be ready to submit an EATI request, but it will be much quicker and more effective if EATI applicants take on as much of the journey as they can. The Participation Model for Personal Supports is based on self-determination and there is no better place to demonstrate it than with the EATI. The BC Personal Supports Network and the EATI are both still young, but growing up fast. Each lesson learned will be instrumental in helping us to demonstrate that as a Network we can problem solve together and, in delivering EATI, we can assist people with disabilities to achieve their goals. For information on how to apply for EATI, please visit us at www.bcpsn.org or on the BCCPD site at www.bccpd.bc.ca/bcpsn.htm. Paul Gauthier, BCPSN, Network Coordinator.
by Robin Loxton Two days after the provincial budget was introduced in March 2010, the Ministry of Housing and Social Development (MHSD) announced substantial cuts to the health supplement and other benefits available to people with disabilities on social assistance. As a result of these changes, the provincial government predicted they would save about $25 million. We provide an overview of these cuts in this article. These reductions in benefits were totally unexpected. There had been no community consultation prior to the announcement, so no one in the community knew that access to important health benefits would be restricted starting April 1, 2010. The BC Coalition of People with Disabilities (BCCPD) immediately went to work, letting people know about these changes. We sent out media releases, posted community alerts on our website, and informed advocates and community groups around the province of the changes. We also expressed our concerns to government officials about the impact these changes will have on people with disabilities. At the beginning of May, we learned that MHSD had relaxed some of the health coverage restrictions introduced on April 1. The decision to impose a time limit of one year for Medical Services Only benefits for people leaving disability assistance for federal benefits, such as seniors’ pensions and CPP disability benefits, was reversed. The continued availability of ongoing medical coverage for many seniors with disabilities is essential and we believe that the community response played an important part in MHSD reviewing its position. Although we welcomed this reinstatement of medical coverage, other restrictions to health benefits are being made. For example, one of our advocates was recently told by an Occupational Therapist that her client had been denied funding for the replacement of a special lift chair that a doctor had said was medically essential. The advocate had to explain that an appeal would not succeed because, as a result of the changes, this kind of medical equipment was no longer covered in the legislation. Here is a brief list of key changes that came into force on April 1st (unless we have indicated a different date).
A broad range of medical equipment and supplies will no longer be funded by the Ministry. Those that will be funded must be the least expensive option appropriate to the person’s needs and be listed in the regulations. Here are some examples of items that the Ministry will no longer fund:
In addition to changes to what the Ministry will fund, there will be restrictions. For example:
The eligibility requirements for the MNS have been tightened. For example:
The MNS will be reduced by $20 because the Ministry will no longer fund bottled water. People currently receiving the bottled water supplement will receive it until May 31st 2010 only.
As of April 30th, 2010, people with disabilities leaving provincial assistance and going onto federal pensions will continue to be eligible for Medical Services Only, as long as they qualify for the Guaranteed Income Supplement or Canada Pension Plan benefits. People with disabilities who leave assistance for employment will also keep their medical coverage, if they are receiving premium assistance from the Medical Services Plan.
Cleaning, examinations and fluoride treatments will be reduced to once a year from twice a year.
The $75 monthly Shelter Allowance for people who don’t pay rent is eliminated as of June 1st 2010. Robin Loxton is Director of BCCPD’s Advocacy Access Program
by romham gallacher
Note: rom chooses to use lower case letters for his name and for “i.” For anyone who wants to be in solidarity with me as a disabled person, i hope you’ll read this. Every day, i leave my apartment and sighted people stare at me, ask intrusive questions about my body. When they don’t get the answers they want, they get angry, tsk, shake their heads, dismiss me, laugh, swear, occasionally spit and hit. It’s especially brutal when i’m alone. It happens all the time because i’m always disabled in ways sighted folks can perceive. They behave as though they have ownership over my body, as though it’s here for them to scrutinize and judge. They do so with the knowledge that most of the people around them will back them up. When ENabled friends allow their privilege to bleed into their interactions with me unchecked and without doing the actual work necessary to be in true solidarity with me, it literally aches.
Strangers are enough to cope with, but at least i’ll be getting off the bus soon, getting to the safety of my apartment. But it doesn’t just happen with strangers, none of whom are claiming to be my “ally.” When friends, lovers and “allies” do these things, it follows me home, eats away at me in ways no stranger could. When “allies” refuse to learn, listen, shift, it burns my throat. When ENabled friends allow their privilege to bleed into their interactions with me unchecked and without doing the actual work necessary to be in true solidarity with me, it literally aches. Daily i’m disabled by an ableist society. Yet when speaking about this reality, i’ve been told by “allies” that, in my writing, my words are “too much,” that i swear too much, “expect too much” and, ultimately, that i’m “too sensitive.” When you understand what a tiny percentage of experiences my writing articulates, you might appreciate how reasonable they are. What is an ally? allies: 1. to unite formally, as by treaty, league, marriage, or the like. 2. to associate or connect by some mutual relationship. 3. to enter into an alliance; join; unite. 4. a person who associates or cooperates with another; supporter. i don’t want allies, i want people to be in solidarity with me. solidarity: 1. union or fellowship arising from common responsibilities and interests, as between members of a group or between classes, peoples, etc. 2. community of feelings, purposes, etc. 3. community of responsibilities and interests. You and i can have conversations about what it means to be in solidarity with one another, in all our complexities. There is an exchange, understanding and agreements are made. i cannot be an ally to the group “A” (sex trade workers or people of colour for example). It’s an impossibility, unless i believe members of Group A have one mind, one set of desires, expectations, one way of expressing themselves. i don’t believe that, so i work to understand on an individual basis what it takes for me to be in solidarity with individual members of Group A. i hope that work translates into my broader understanding of the multitude of issues and realities of members of Group A. Of utmost importance is that i do not harm members of Group A with my ignorance, that i listen when they tell me i’ve hurt them, that i take steps to change my behaviour, constantly update my information and connections, and in return share my own stuff. It’s a back and forth arrangement: we both learn, challenge, change, perceive each other, support. It doesn’t count when we’re not both engaged in the work or when we can and do back out anytime it gets uncomfortable or painful. If i backed out of being in solidarity with you when things got tough or too inconvenient, where would we be? How long would you want me around if, when it really counted, every time you wanted to just speak your mind about the kinds of things you deal with, i took off?
Being in solidarity with people is not an identity to claim. It’s work. Our responses to that work will sometimes cause pain, anger, resentment, shame, embarrassment, guilt and defensiveness that we need to work through. It’s always worthwhile. Don’t be my ally. Be in solidarity with me. It’s not semantics, it makes an actual difference in the real world. i want solidarity, nothing less will do.
Living with change is at the heart of a video created by BC Association for Individualized Technology and Supports (BCITS). Inspiration is a window into the lives of people living with ventilators. What you learn will surprise you, challenge you and leave you feeling good. Go to: http://www.youtube.com/user/BCITS
We are updating our Transition readers’ email list, so we can keep you up-to-date on events or issues that may affect you, like changes to goverment assistance rules.
If you’d like to receive occasional news from us, between Transition editions, please email your full name, mailing address and email address to feedback@bccpd.bc.ca or call Val at 604-875-0188. You can also find us and follow us online on Facebook, Twitter and Youtube. Visit www.bccpd.bc.ca/multimedia.htm.
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.
Canadian Publications Mail Product Sales Agreement No.40051676
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.