Volume 1, Issue 5
‘I want to raise my kids and the thought of not being there to raise your children is...’
For her, every day is golden
Colleen Edwards and her twin daughters Paige and Rachel. Edwards inherited the gene for Huntington’s disease and worries her daughters may it have too.
Presence of Huntington’s disease gene makes family determined to live each day fully
Marisa Babic Staff Writer
C
olleen Edwards bears a heavy burden: She knows her destiny. Edwards, a mother of five-year-old twins, carries the gene that leads to Huntington’s disease, a progressive, degenerative disease that causes certain nerve cells in the brain to waste away, eventually leading to mental and physical decline. Edwards notes the hereditary disease is unique in that you can be tested to see if you the carry the ab-
normal gene – a test she chose to take. “It’s kind of like finding out your fate,” says the 36-year-old White Rock woman. “A lot of people don’t want to know,” she adds. “For me, knowing gave me a kind of power over it in a way.” Edwards inherited the gene from her father, Dan Shay, who was diagnosed with Huntington’s in 2006 when her twin girls were a year old. Shay’s early symptoms began to show themselves as an inability to concentrate. He also started having difficulty performing simple routine tasks, like driving. Reliable and diligent, the former engineer was
Sharon Doucette Photo
suddenly having trouble holding on to jobs. Tests confirmed Huntington’s disease. Edwards wasted no time in getting herself tested for the presence of the abnormal gene. Three months after her father’s diagnosis, doctors confirmed that she too carried the gene. After she recovered from the shock, her first thoughts were about her girls. “I want to raise my kids and the thought of not being there to raise your children is...” she trails off, her voice unsteady. see MAKING EVERY DAY, page 4
Volume 1, Issue 5 • POSSabilities • thenownewspaper.com
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thenownewspaper.com • POSSabilities • Volume 1, Issue 5
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Possabilities is produced by the NOW newspaper, a division of Postmedia Network Inc. Suite 201-7889 132 Street, Surrey, B.C. V3W 4N2 Phone 604-572-0064 Fax 604-572-6489
Mom Jen Temple about four-year-old Jakob: “If it weren’t for his bruises, you’d never know that he’s different.”
Gary HOLLICK Publisher
Beau SIMPSON Managing Editor
Arlie MCCLURG General Sales Manager & Director of Business Development
SEND US YOUR STORY IDEAS: edit@thenownewspaper.com
Marisa BABIC
Possabilities writer
CONTACT: 604-572-0064 Kim ROSE
Consultant and Business Development Kim.Rose@kwantlen.ca
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Business Development MGauley@thenownewspaper.com
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Production Manager
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Rare disease
Community rallies for Jakob Event raises $17,000 to help cover surgery costs Marisa Babic Possabilities Writer
Jakob Temple, a rambunctious four-yearold, loves to pose for the photographer and he’s quick to flash a winning smile. He appears to be a healthy and normal little boy in every way. “If it wasn’t for his bruises you’d never know that he’s different,” his mother Jen Temple said in an interview with the Now, which also publishes Possabilities. Jakob has a rare medical condition called portal vein thrombosis, which means he’s missing one of the main veins to his liver. The portal vein carries blood from the stomach, spleen and small and large bowels to the liver, an organ that purifies blood and aids digestion. Jakob’s body compensates by doing this job through a network of smaller veins. But as he grows older, his body is producing more blood than the little veins can handle and the pressure is collapsing the veins and swelling his spleen and liver. Temple fears a hard knock could rupture an organ and so that often leaves Jakob on the sidelines when it comes to playtime, especially contact sports. “He has to be careful,” said Temple, who constantly keeps a close eye on her son.
Jakob can’t jump on a trampoline, ride a skateboard or scooter nor play sports — “all the normal childhood things.” Temple, a mother of three, first began noticing symptoms in her youngest about a year ago, frequent nosebleeds and bruising at the slightest bump. Their family doctor determined that Jakob had an enlarged spleen. Within days, an ultrasound was done and the lad was quickly referred to Children’s Hospital in Vancouver where specialists confirmed the diagnosis of portal vein thrombosis. After a series of tests, doctors have deter-
difficult, it’s stressful but by the same token, I know this is the right thing for him,” she said. As portal vein thrombosis is a rare condition, there are few surgeons that are able to perform the complex procedure. Jakob will be getting his surgery at a hospital in Chicago. The Ministry of Health has approved the surgery but the BC Medical Services Plan only covers the cost of the surgery itself. Friends of the Temple family recently staged a fundraiser at a Surrey pub called Jakob’s Night to help the family cover the cost
overwhelmed with how nice everybody was and all “ I’m the support that we got was crazy. It was just amazing.” Jen Temple
mined that a special type of shunt surgery is the best treatment for Jakob, and his parents agree. Jakob is slated for surgery in an American hospital on Jan. 24. The complex procedure is expected to take eight hours. As a mother, Temple is apprehensive at the thought of the intricate surgery, but she’s also looking forward to the day her little boy can lead a normal life. “I’ll just be happy when it’s all done and he can have his life back to normal. It’s very
of staying in the Windy City for one month, during the boy’s surgery and recovery. The event raised over $17,000, surpassing the fundraising target of $15,000. Temple says she was delighted by the outpouring of help and is deeply grateful to supporters. “It’s awesome,” Temple said in a separate interview after the event. “I’m overwhelmed with how nice everybody was and all the support that we got was crazy. It was just amazing.”
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Volume 1, Issue 5 • POSSabilities • thenownewspaper.com
Column
News
You learn, even when you fail
Making every day count good ‘way to live’
My View
EDITOR’S NOTE: Possabilities is proud to introduce new columnist Abneet Dhaliwal. Watch for her column in every issue.
B
efore I left high school, I was unsure about what my future held. It was tough leaving the comfort of school, where I knew my teachers, had close friends and had a predictable routine. I felt disconnected from all of the things that made my life important to me, it was like leaving home for the unknown. I wanted to have a plan for my future when I left school, but it was not that easy – information was not readily available and the process to find support for after school was lengthy and confusing. I had to take the initiative to get the information to help my parents get in contact with the proper people. My special education assistant was a fantastic support, she guided me in the right direction to start my journey.
In order for me to receive support after I left school, I needed to have an assessment done through Community Living British Columbia to see if I qualified for its services. I was nervous about the process but the person who performed the assessment was very helpful and explained to me what to expect and the next steps. I still felt uncomfortable and I wanted to know if I was doing it right, if how I was answering the questions was what they wanted. I began to feel like I was stupid on paper. The process was very difficult, it took me time afterward to come to terms with the outcome of the assessment. The results of my assessment, though, meant that I would be able to receive services from CLBC but I would have to wait for a year to get a facilitator. Once I had the facilitator we had a couple of meetings to discuss my goals and future plans. This helped point me in the direction of going back to school. I was disappointed to find out that I would not be able to go college, as they will not accept you to the program if you need any type of physical support; which I need due to my cerebral palsy. My next available option was day services, where I was able to choose from my top
three favourite places. I went on tours at each place and then began my time on yet another waitlist. I was happy to find out I got in at my first pick, which was Milieu Family Services. Milieu has an awesome employment program, great facility and positive environment, which helped me get connected to Neil Squire, an employment course where I learned job readiness and research skills. I was able to have staff support there, which made it possible for me to attend. Now that I have completed my course, I am practising the skills I have learned and putting them to good use being a contributor for Possabilities, a publication of the Now newspaper in Surrey. It has been a great first year out of high school, I would have never thought I would have had all the opportunities I have experienced. I am very appreciative of all of the support and confidence people have given me. I hope others can learn from my experiences and take comfort in knowing it will work out in the end. I try to live my life by this belief: Never be afraid! Take whatever comes because you learn even when you fail. Abneet Dhaliwal is a contributing columnist for Possabilities.
story continued from page 1
Since the disease follows a hereditary pattern, it means that her twins, Rachel and Paige, each have a 50 per cent chance of developing it. She tries not to think about that possibility and clings to the hope that they’ll be spared a similar fate. So far, Edwards has no symptoms but she lives with the knowledge that the early signs of the disease will eventually slink into her life. Although researchers continue to make advances and current medications help victims manage Huntington’s, there is no cure. The knowledge that the disease will blot her life makes her appreciate life’s daily joys. She embraces each new day with passion and no longer postpones plans with her daughters and her hubby, Derek. “I try to make sure that every day counts. And that’s not a bad way to live for anyone.” For more about Huntington’s disease, visit the B.C. chapter of the Huntington Societ y of Canada at www. huntingtonsociety.ca.
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Abneet Dhaliwal
thenownewspaper.com • POSSabilities • Volume 1, Issue 5
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Library Outreach Services
Audiobooks offer ‘world where she can see again’ Marisa Babic Possabilities writer
As a young girl, Helen Brodland often had her nose stuck in a book. When she developed eye problems in midlife, she made adjustments and switched to large-type books. Over time, though, even the outsized print on the pages of these special editions became faint and blurry. Now at the age of 81, she can only see shadows and swathes of light. But she still enjoys the all the dramas spun in the latest mystery novels. Brodland is able to satisfy her love of books through Surrey Public Library’s Outreach Services, a program that offers home delivery of audiobooks and other library materials to people who are homebound due to illness, disability, or age. Seniors without transportation also qualify. “I spend hours listening to books,” said Brodland, who goes through five or six a week. “It keeps my mind busy.” The books – on cassette, regular CD, MP3s and Daisy CD – plus other materials are delivered to the client’s home by one of the program’s many volunteers. Volunteers drop off library materials at the client’s home once a month. In this regard, Brodland is luckier than
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most. Her hubby Les, a former program volunteer, picks up a fresh stack of audiobooks for her every week. Les says audiobooks are a gift. “She walks into a world where she can see again,” he says. Iwona Mandera, manager of Outreach Services, says clients can make their requests by genre, specific title or favourite authors. Library staff also selects books for clients based on their literary profile, which is kept on file. Clients can choose their audiobooks, complete books recorded by professional actors, from a wide category of themes including bestsellers, thrillers, mystery, romance, westerns, biography, history and travel. Surrey Public Library has about 11,000 items in its collection but through an interlibrar y loan system, users can borrow materials from other libraries in Metro Vancouver and the Fraser Valley. Through its collaboration with the Canadian National Institute for the Blind, the program is able to tap into CNIB’s vast library. For information on signing up for Surrey Public Library Outreach Services program visit www.spl.surrey.bc.ca. For the Fraser Valley Public Library program call 604-8597141 or toll-free at 1-888-668-4141 or visit www.fvrl.bc.ca
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Volume 1, Issue 5 • POSSabilities • thenownewspaper.com
Letters to the Editor
WE BELIEVE ALL CHILDREN ARE CREATED EQUAL
Somewhere, the system broke down The Editor, Re: The tragic story of Amy. (see news story and column on page 7) This is a very sad and disturbing case, and I first want to express my sympathy to the family. It is fortunate that Amy survived, but this story should be of great concern for everyone, especially for parents of children with intellectual disabilities. Without access to all of the details it is not possible to know exactly where things went wrong, but it appears that the needs of an individual with developmental disabilities (in this case, Down syndrome) may not have been ‘flagged’ as an emergency to ensure that that individual’s care and support were evaluated appropriately and managed to their benefit. As a parent and a representative of the Lower Mainland Down Syndrome Society, it
is of great concern to me that somehow this horrific situation occurred, and I would like to see action taken to address whatever went wrong so that this type of problem can be avoided in the future. Children with Down syndrome have some physical, intellectual and emotional developmental delays, and it is important to recognize a variety of support mechanisms are needed to assist an individual with Down syndrome, including family or caregiver support, early medical and educational attention and positive public attitudes. Somewhere the system broke down, and this support was not available when it was needed, and we need to understand where that breakdown occurred, and how the system can be improved for the future. Edwina Jeffrey, President LMDSS
We have a good working relationship The Editor: Re: “Cash for sports,” Volume 1, Issue 4 of Possabilities. SportAbility-Cerebral Palsy Sports Association of B.C. has a good working relationship with the Cerebral Palsy Association of the BC. SportAbility-CPSABC receives their funding in part from gaming and utilizes this money for it sports programs. The Cerebral Palsy Association of
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thenownewspaper.com • POSSabilities • Volume 1, Issue 5
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Column
Teen girl was failed by government ministry Kim Rose Viewpoint
After nine days of trying to aid her mother with water and pills while she laid dead in the family trailer home (see story below), Amy, a 15-year-old girl with Down syndrome, is now in the care of the same government ministry that appeared to fail her. It is now, and only now, that her home situation was important enough to the Ministry of Children and Family Development to take action after a neighbour discovered this heart-wrenching scene. I woke the next morning after hearing the story of Amy and instantly tried to place myself in her shoes, trying to imagine the fear and confusion she must have felt for all
that time. But the reality was when I woke up, I was safe, I knew someone would be there for me if I needed them and that people would notice right away if I had not come out of my house after a day or so, if I had not gone to school or work. Yet Amy did not have that. Why? The Ministry of Children and Family Development say its “services and supports are intended to promote children’s healthy development, maximize quality of life, assist families in their role as primary caregivers and support full participation in community life.� The system severely failed Amy, who was days away herself from death due to dehydration and fatigue. This is a system that when you fail, people can get abused, suffer, fall through the cracks of systems or, worst of all, die. The MCFD funds a range of programs and services for children and youth with special needs and their families. It is a great mandate and, in many cases, they do great work but I ask you this: Is leaving a child of a
15 years of age with a developmental disability, alone in allegedly dirty and substandard living conditions, with a drug- and alcoholaddicted mother, in the best interest of the child? Reportedly, one of her brothers even removed her from the home last July and called the RCMP and the ministry to complain and express fears for her care — only to be told that after a review of the home, he must return his sister or be charged with kidnapping. Outrageous! Many neighbours had allegedly raised concerns for Amy’s home life, as well. Possabiities would not be doing its job if we let a story like this pass and not comment. I am outraged and shocked that the ministry, armed with information from Amy’s brothers and neighbours, didn’t intervene in a better manner to assist the family. There are many questions this raises. If this happened on Sept. 14, why is it only making it to the media in November? I understand confidentiality and privacy but when the system fails, we have to admit it in
a timely manner so it can change. Oh, we can blame cutbacks, privacy issues and an overburdened system, but does any of that matter to Amy after nine days of being in that home alone? Amy’s mother had always told her not to go outside or answer the door or phone, the brothers reported. So Amy was doing what she had been taught. Yet it could have cost her own life. It is unclear if she had any workers coming into the home supporting her, where she could have learned many life skills that could have avoided this situation. Amy is a classic case of why we need such an important ministry, yet it failed Amy miserably. Shame. Her brothers, who are not able to care for her full-time, do hope she can be relocated to be near them in North Vancouver. Let’s hope they can get it right this time. � ALSO SEE LETTER ON PAGE 6
Disabled teen left alone with mother’s corpse for nine days report the matter to the representative for children and youth, because the ministry is still assessing whether the child was injured. “In some cases, harm to a child is evident immediately while in other cases, depending on the circumstances of the child, it may not be,â€? Polak said. But Turpel-Lafond said she’s made her own assessment as an independent ofďŹ cer of the legislature, and concluded the case falls under her mandate. “I don’t know what evidence there would be to say that a child with signiďŹ cant developmental disabilities being left alone with a mother’s corpse for a week or more is not an injury,â€? she said. Turpel-Lafond said the emotional harm alone is enough to warrant reporting to her ofďŹ ce. After a preliminary review of the case, she has launched a full investigation and issued a subpoena, ordering a senior ministry ofďŹ cial in the region to turn over documents and
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short term and long-term needs.â€? The girl’s two adult brothers told reporters their repeated warnings to the ministry that their mother was unďŹ t to care for the girl were never adequately addressed. Mike Prentice, 32, said he and his brother Kevin, 29, who both live in North Vancouver, B.C., had reported their mother Yvonne to social services countless times for alcoholism, addiction to pills — including Clonazepam and Atavan — and being physically and emotionally abusive. In July, Kevin visited their trailer home, which Mike described as being filthy and “like an episode of Hoarders.â€? Kevin took his sister to his home and called police, who told him to contact ministry ofďŹ cials, Mike said. The ministry conducted a survey at the home later that month and told the brothers to return the girl, as their mother was going to charge them with kidnapping, Mike said. Postmedia News
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answer questions under oath. The ministry can expect to receive further orders, she said. “I’m not angry so much as I am concerned about this child. I mean, what does this say about our province? What does this say about us as parents and caregivers to a child with special needs?â€? she asked. “How could this happen? And if there is a person in this province that is not asking themselves that question, I would be very surprised. But my job is to ďŹ nd out the answer to that question and I would like the ministry to be fully compliant in assisting me to answer that question.â€? Polak committed to sharing all relevant information on the case. “The ministry’s immediate priority is ensuring the child at the forefront of this case is well cared for and supported,â€? she said. “To that end, the ministry would welcome participation through the representative’s advocacy function to assist in the development of a plan that addresses the child’s
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British Columbia’s child watchdog has issued a subpoena ordering a provincial bureaucrat to answer questions under oath about the case of a 15-year-old disabled girl left alone with her mother’s rotting corpse for nine days. Mary Ellen Turpel-Lafond also blasted the Ministry of Children and Family Development on Wednesday for failing to notify her when the case arose two months ago. The emaciated girl, who has Down syndrome, was discovered with her dead mother in Chilliwack, B.C., on Sept. 14 when neighbours broke into the mobile home. Turpel-Lafond only learned of the case through media reports despite the ministry’s obligation to report critical injuries to her ofďŹ ce. “I find it to be quite unacceptable that they would not view this as an injury to a child,â€? Turpel-Lafond said. Children’s Minister Mary Polak issued a statement saying that it was “prematureâ€? to
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Volume 1, Issue 5 • POSSabilities • thenownewspaper.com
Travelling
Hotel rooms designed for guests with disabilities Marisa Babic Possabilities Writer
Finding the right hotel for a pleasure or business stay usually means a spacious room with a few luxury touches and possibly a nice view. But for a person with a disability, a feature like a roll-in shower is far more important than a fluffy down comforter. Spurred by business smarts and government legislation, the hotel industry is building its new hotels with an eye to universal design. Some hotel chains incorporate universal design into their blueprints when they remodel older properties. The Sheraton Vancouver Airport Hotel in Richmond underwent a major renovation in 2009 and the multi-million-dollar facelift includes rooms with special features catering to people with disabilities. Besides the basic ramps, the features include braille elevators and braille room numbers, door peepholes placed at wheelchair eye-level and lower beds in some of the rooms. Of the hotel’s 400 rooms, 12 are designed for the comfort of guests with disabilities.
“We had four rooms before but they were basically with standard bathrooms with grab bars and some additional features. They weren’t as big as these now,” said director of rooms Mario Pimentel as he gave Possabilities staff a tour of the place. The rooms contain a single king-sized bed rather than two queen-sized beds to allow more room for wheelchairs and ensure ease of mobility. The bathrooms, which feature roll-in showers with a flip-down seat, meet stringent ADA (Americans with Disabilities Act) guidelines. While the various levels of government may be taking the lead in being socially progressive and promoting legislation aimed at inclusion, the decision to embrace universal design by the corporate sector appears to be rooted just as equally in sound business sense. Like any good company constantly seeking to expand its market, Pimentel conceded that the American-based hotel chain is tapping into an under-serviced market and a client base with spending power. “And it’s not only people in wheelchairs who desire these rooms,” he added. As the population ages, more and more
Mario Pimentel of the Sheraton Vancouver Airport Hotel in Richmond says of the hotel’s 400 rooms, 12 are designed for guests with disabilities. Sharon Doucette Photo
elderly travellers coping with various health issues, including achy bones, will require hotel comforts such as an easily accessible shower with a flip-down seat. “It’s just easier to sit down and have a shower. It’s more comfortable,” he says. Ryan Solberg, director of sales and marketing, said the disability rooms were sold out during the recent 2010 World Wheelchair Rugby Championships that were held at the Olympic Oval, which is about five minutes from the hotel. The Ocean Promenade Hotel, a boutique
hotel in White Rock, offers many similar amenities for people with disabilities, including rooms and suites with stunning views of Semiahmoo Bay. Marketing and sales director Anna Scott said three of the 36 suites include special features. “We have specifically selected choice suites which offer the same level of quality and comfort enjoyed in the standard suites with all the extras like private balcony, kitchenette and walk-in showers,” Scott said.
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thenownewspaper.com • POSSabilities • Volume 1, Issue 5
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Community Events December 2010 ❚ World Aids Day – is Wednesday, Dec. 1. This day is an opportunity for people worldwide to unite in the fight against HIV and AIDS. This year, it’s up to us to stop the spread of HIV and end prejudice. For more information, visit www.worldaidsday.org. ❚ International Experience in Serving Job Seekers with Disabilities. The province of B.C. is moving toward implementing one-stop employment centres as a key part of 2012 Employment Program of British Columbia. This program has the potential to dramatically change the manner in which job seekers with disabilities seek employment and employment supports. Open to everyone. Sponsored by ORW and ASE programs, it is Thursday, Dec. 2 at Douglas College, Room 1614 at the New Westminster campus. The program runs from 9 a.m. to noon. For more information, call 604-527-5472. Fee is $50 (no HST). ❚ International Day of Persons with Disabilities Annual Celebrations is Dec. 3. Celebrate the achievements of people with disabilities from 5:30 – 9 p. m. at the Roundhouse Community Centre in Vancouver, featuring art, a craft fair, music, performances, food,
Emily Tran Occupational Therapist
door prizes and Mayor Gregor Robertson, who will open the event. Everyone welcome to this free celebration sponsored by the City of Vancouver. For information, or if you’re interested in participating or helping, visit http://vancouverdisabilitiesday.ca or call 604-608-0384. ❚ Registered Disability Savings Plan Info Session is on Dec. 6, from 3:30 to 5 p.m. at UBC Robson Square Room, C215, 800 Robson St., Vancouver. Call 604-232-2404 for more information. ❚ International Human Rights Day marks the anniversary of Dec. 10 1948, when the United Nations General Assembly adopted the Universal Declaration of Human Rights, which states: “All human beings are born with equal and inalienable rights and fundamental freedoms.” This Declaration holds true more than ever today. Every year on the same day, the United Nations celebrate Human Rights Day. For more information, see www. un.org/events/humanrights. ❚ Honouring the Convention: A call to action in B.C. The Disability Advisory Committee of the Community Legal Assistance Society (of which BCACL is a member) is hosting a community forum titled “Honouring the Convention: A Call to Action in B.C.”
Jennifer Sailofsky Physiotherapist
on Dec.10, the International Day of Human Rights. The forum runs from 8:30 a.m. to 4:30 p.m. at the Vancouver Public Library, 350 West Georgia St., in the Alice McKay Room.
January 2011 ❚ Access Programs for People with Disabilities Program. Kwantlen Polytechnic University – Surrey Campus will be hosting an information session on Wednesday, Jan. 20. Doors open at 10:30 a.m. and the presentation will start at 11 a.m. sharp in the Conference Centre. Presenters will discuss the programs and services APPD offers. A tour of Kwantlen facilities (12666 72nd Ave.) will take place after the presentation. Everyone is welcome. RSVP to Nicola Soles at 604-599-2934.
February 2011 ❚ The last Wednesday of each February is Anti Bullying Day. For 2011, this will be marked on Feb. 23, and is also known as “Pink Shirt Day.” It was originally started as a protest against a bullying incident at a Nova Scotia high school (Central Kings Rural High
School). On this day, participants are asked to wear pink to symbolize a stand against bullying. The original event was organized by David Shepherd and Travis Price. They bought and distributed 50 pink shirts after a student was bullied for wearing a pink shirt on the first day of school. In 2008, Premier Gordon Campbell proclaimed Feb. 27 to be B.C.’s provincial anti-bullying day. It was then celebrated on Feb. 25 in 2009.
March 2011 ❚ The 4th International Conference on Fetal Alcohol Spectrum Disorder will be held on Wednesday, March 2 and Saturday, March 5, all day on both days, in Vancouver. UBC Interprofessional Continuing Education and the Canada Northwest FASD Partnership invites the public to the 4th International Conference on Fetal Alcohol Spectrum Disorder, which will focus on the topic: The Power of Knowledge: Integrating Research, Policy, and Promising Practice Around the World. For more information and registration on this conference, visit www.interprofessional.ubc.ca/brochures/FASD2011advancenotice.pdf where the advance notice can be found.
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Volume 1, Issue 5 • POSSabilities • thenownewspaper.com
Community Living BC
‘Community conversations’ ignite council’s enthusiasm
EMPLOYMENT SOLUTIONS Back in Motion specializes in helping individuals
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Everyone should have the opportunity to connect with friends, explore interests and learn new skills. Unfortunately, often due to a lack of understanding and awareness, individuals with developmental disabilities do not always have these opportunities. Instead, we hear stories of loneliness or isolation instead of inclusion and participation. So how can people get involved and make a positive difference in the inclusion of everyone in our community? That was the question facing Community Living BC’s Surrey-Delta Community Council. Community council members do not hesitate to get involved and make change happen. Members volunteer their time, experiences and expertise to help build relationships that raise awareness about the importance of inclusive communities. Community Living BC (CLBC) is a Crown agency that provides services and support to over 12,700 individuals with developmental disabilities and their families. Services are delivered through a network of more than 3,200 contracted service providers across B.C. CLBC’s Community Councils want people with developmental disabilities to feel inc l u d e d a n d h ave o p p o r t u n i t i e s f o r employment, social connections, housing and safe participation in the community.
In order to address issues of inclusion and what can contribute to a full and rewarding life for people with developmental disabilities, the Surrey Delta Community Council organized a series of ‘community conversations’ with self-advocates, families and caregivers. Fortunately, the Council discovered that a Council member, Dr. Sandra Cottingham, had training and expertise to facilitate the council’s process. “This was truly a call to action for the council” explains Cottingham. “The community conversations enlightened all of us, and really ignited our council’s enthusiasm.” People with developmental disabilities want to follow their interests and passions, said Cottingham. “They want to be fit and physically active, they want to be able to go out and take a course in the evening — to learn computer skills, take a photography course, be lifelong learners, just like everybody else.” Today, the Community Council is looking for people to be a part of their conversations. The members of a community are its biggest assets and Surrey and Delta are vibrant, thriving communities with unlimited possibility. For details, contact the Surrey Community Living BC office at 604-5018310 or the Delta Community Living BC office at 604-501-8310.
OUTREACH & SUPPORT SERVICES WELCOME! Outreach and Support Services offers a variety of programs and support for individuals with disabilities to get involved and take part in an active and healthy lifestyle. Surrey Parks, Recreation & Culture, in partnership with Surrey Association for Community Living (SACL), offers recreational opportunities for children and youth with disabilities. SPIRIT Volunteer Program - Need volunteer support? Want to become a Volunteer? Catch the SPIRIT! SPIRIT (Support Participation and Inclusion ~ Reach out, Involve and Transform!) embodies the desire to strengthen community and increase involvement and participation. With the support of SPIRIT volunteers, more members of our community with disabilities are able to participate in Surrey Parks, Recreation & Culture activities to improve their health and wellness, education, and/or personal development. For Individuals with developmental disabilities Relax, renew and rejuvenate! A social, water based exercise program adapted for individuals with developmental disabilities. Low impact exercises increase balance, dexterity and core strength and buoyancy promotes relaxation in a safe and supported environment.
AQUA-FIT FOR LIFE
For Individuals with physical disabilities Feel good, from the inside out! A fun, water based exercise program adapted for individuals with physical disabilities. Low impact exercises increase balance, dexterity and core strength and the buoyant properties of water promote relaxation and rejuvenation in a safe and supported environment.
RED CROSS SWIM KIDS – ONE TO ONE
Join in the fun and splash into our supported swimming lessons! Children will be taught the Red Cross Swim Kids program and progress at an individual rate in an inclusive atmosphere. In partnership with the Surrey Association for Community Living.
AQUA-LAUNCHERS – ONE TO ONE
Youth will be taught important water safety and skills while progressing at an individual rate in an inclusive atmosphere. Perfect for youth just starting out or for those who want to improve their strokes. In partnership with the Surrey Association for Community Living.
SKATE – ADAPTED
Chill out on the ice and learn the basics of skating in a fun atmosphere with enthusiastic instructors. Children are provided with one on one support in a safe, welcoming environment. In partnership with the Surrey Association for Community Living.
LEARN TO PLAY SLEDGE HOCKEY
Want to learn how to play an exciting Paralympic sport? Learn how to move your sled, shoot the puck, and play fun games with an enthusiastic instructor. Perfect program for children, youth, and adults wanting to learn Canada’s national pastime! All abilities welcome. In partnership with SportAbility.
KIDS WHO COOK
Let’s get cookin! Try a variety of cool recipes to cook for your friends or family. Learn how to whip up breakfast shakes, appetizers, dinners, desserts and baking goodies. A great life skill and a delicious way to spend the afternoon! Ages 8-12yrs. Staff support provided (ratio 1:2). In partnership with the Surrey Association for Community Living.
COOKING (YOUTH)
Surprise yourself and others. Learn to cook food for the various meals of the day ... breakfast, lunch, dinner, snacks and desserts! Ages 13-18yrs. Staff support provided (ratio 1:2). In partnership with the Surrey Association for Community Living.
ADULT MULTISPORT
Drop in for an afternoon of floor hockey, basketball and more! Friends, family and anyone else in the community who would like to participate are all welcome!
YOUR PLACE
A drop-in social recreation program for adults with disabilities. Activities
include crafts, game nights, movie nights, outings and more! Support staff are recommended to attend if one to one support is required. Please visit our website or leisure guide for detailed program listings www.surrey.ca.
TEEN BLAST
Bored of staying home on Saturday afternoons?! Breakout of your old routine with some new friends and visit exciting locations around the Lower Mainland! Ages 12-18yrs. Staff support provided (ratio 1:2/3). In partnership with the Surrey Association for Community Living.
DANCE MIXER – CHILDREN
Get a mix of your favorite dance moves incorporating Hip-Hop, Jazz, Ballet, and Musical Theatre techniques. A fun way to improve overall balance, posture, strength and coordination. In partnership with the Surrey Association for Community Living.
DANCE MIXER - YOUTH
Get a mix of your favorite dance moves incorporating Hip-Hop, Jazz, Ballet, and Musical Theatre techniques. A fun way to improve overall balance, posture, strength and coordination. In partnership with the Surrey Association for Community Living.
BOCCIA
For Individuals with Physical Disabilities Want to learn how to play an exciting Paralympic sport? This precision sport is for persons with physical disabilities. Boccia has been adapted to be played in a gym with custom balls and equipment. In partnership with SportAbility.
FUN FOR KIDS
Don’t miss out on these Saturday afternoons packed with wacky gym games, arts n’ crafts, and adventure outings in the community. A great place to make friends, get active and have fun in a welcoming atmosphere with a different theme every week! For children with special needs. Staff support provided (ratio 1:2/3). In partnership with the Surrey Association for Community Living.
COMMUNITY DEVELOPMENT SERVICES OUTREACH AND SUPPORT SERVICES 111 - 10277 – City Parkway, Surrey, BC, V3T 4C3 www.outreach.surrey.ca www.outreachandsupport@surrey.ca Tel: 604-502-6321 or 604-598-5864 Fax: 604-502-6315
www.outreach.surrey.ca
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AQUA-FIT FOR LIFE
thenownewspaper.com • POSSabilities • Volume 1, Issue 5
/PA11
‘Heart of a Dragon’
Men and women in moving pictures Filmmaker’s dramatization of Rick Hansen’s Man in Motion tour a team effort that took cast, crew to China Michael D. Reid Postmedia News Service
You can’t blame Michael French if he feels as if he has just run a dozen marathons, now that Heart of a Dragon, his feature film inspired by Rick Hansen’s remarkable accomplishments, is in theatres. It has been 25 years since the Vancouver filmmaker flew to China to document Hansen’s arrival in Beijing, where one million Chinese admirers gave the wheelchair athlete a hero’s welcome halfway through his 34-country Man in Motion tour. Hansen, who suffered a spinal-cord injury that rendered him a paraplegic in 1973 after he was thrown from the back of a pickup truck, undertook his worldwide odyssey to raise awareness of spinal-cord injury. French, a former producer on The Vancouver Show, made a documentary about it back then. And he was so captivated by Hansen’s spirit, and the love, loyalty and support he received from his entourage that, 10 years ago, he began the arduous task of developing an independent feature film about the journey. It opened Oct. 29 in B.C. “They loved Rick like a family. That’s what allowed him to go around the world,” said French, who, at the urging of executive producer Mark Gordon (Saving Private Ryan), wrote the screenplay after failed attempts by others. French consulted with Hansen and his wife, Amanda, before making the film, which dramatizes the collective trust, teamwork and perseverance it took for Hansen to realize his dreams. Filmed in Beijing and on the Great Wall of China, Heart of a Dragon covers two days in the lives of Hansen, played by Victor Webster; Amanda (Sarah-Jane Potts), then his girlfriend; his cousin Lee (Ethan Embry); and Don (Andrew Lee Potts), Hansen’s guilt-
Sarah Jane-Potts (as Amanda Reid) jogs next to Victor Webster (as Rick Hansen) in the new movie Heart of a Dragon. ridden best friend who survived the truck accident unscathed. The film also stars actor-musician Jim Byrnes as Ivan, a cynical photojournalist who questions Hansen’s motives. Getting the movie made was a herculean task, French admitted. Sherry Lansing, who came to Vancouver in 1987 to make The Accused when she was a producer at Paramount, saw French’s documentary and tried to develop a feature film when she became the studio’s chairwoman. It didn’t fly, but it inspired French’s version. Grammy Award-winning musician David Foster, who, with lyricist John Parr, co-wrote Man in Motion, their theme song for St. Elmo’s Fire, got on board as executive producer. Although the Victoria native said the lyrics had nothing to do with St. Elmo’s Fire, he and Parr were so moved by video footage of Hansen reaching the top of a hill and raising his arms, they wrote the song in 15 minutes. “It inspired us. That Rocky moment was un-
believable,” said Foster. French said he’s grateful Hansen trusted the filmmakers enough to sell them the movie rights. “I look to Amanda with equal respect and admiration,” French said. “It’s the yin and yang; they fulfil each other. They trusted us implicitly to tell a story and didn’t attach strings.” Having Byrnes personify skeptical members of the press corps was a plus, French said. “Jim, as you know, is disabled, but that’s hardly a word he even knows,” French said. “He was so demanding of himself and of us.” Byrnes, who lost both legs above the knee on Feb. 26, 1972, after being struck by a car, sang during Hansen’s homecoming celebrations and recalls asking French “to save something for me” when he was ready to make the film. The soundtrack includes Byrnes’s song “Running Out of Time,” and a new “Man in Motion” song recorded by Michael Johns. Byrnes views his composite character as “the
devil’s advocate” who mirrors the opinions of naysayers. “At best, this is an ego trip, and Rick’s got this coterie, and at worst, it’s some kind of cult,” he said, explaining Ivan’s viewpoint. “He’s travelling with his best friend who is guilt-ridden, his cousin who goes any way the wind blows, and this woman who left a whole life behind for him. What did he do? Hypnotize her? It’s your job to figure out what the hell is going on here.” In one scene, Ivan even suggests Hansen is using his disability to draw attention to himself. “But what my character found out was, they really did have respect for one another and it was for a greater cause, not an ego trip.” Byrnes, credited as James Thomas Byrnes, applauds the film for dispelling stereotypes. “Everybody has some kind of disability, and many people have ‘invisible’ disabilities. People are afraid of success, failure and things that hold them back in life. They’re not necessarily physical.”
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We want to extend our best to you and your family for a wonderful holiday season and a happy and healthy New Year. We are looking forward to continued success in 2011. If you’d like to advertise in this publication or for more information call (604) 572-0064.
Thank you for voting us Best Plumbing Store for 12 years in a row!
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Volume 1, Issue 5 • POSSabilities • thenownewspaper.com
Accessibility
Often, it’s the small issues that are maddening Marisa Babic Possabilities writer
Sharon Doucette Photo
his siblings had to carry him up a flight of stairs. “It was just brutal.” A simple table can cause problems. Tiny tables on pedestals, of the type favoured in many fast food places, prevent a wheelchair from fully sliding in. In Indo-Canadian temples that forbid tables and chairs, the simple
act of sharing in food, is nearly impossible. “I can’t hold my tray and eat my food without spilling it,” says Biring, who works a couple of days a week at Real Canadian Superstore. Overall, Biring acknowledges that major advances have been made in terms of accessibility.
“I can’t complain too much because a lot of change have been made,” he says. But smaller issues, which may seem like no big deal to most people, remain and these issues pose barriers to complete independence. “Somehow I’ve managed to go with the flow but it gets frustrating.”
Photograph by Denise Rowe ©, PhotoSensitive
Wheelchair ramps are everywhere and public transit is accessible. But it’s often the small things that frustrate a person with a disability. Like counters in cafés and fast food restaurants that are too high. “That’s an issue,” says Onkar Biring, as he chats with a reporter at a café in Central City shopping centre. Some banks do a better job of it. “The one I deal with, they have a lower counter. All I have to do is raise my hand for someone to come over,” Biring says. Ramps abound in most public spaces but some of the designs can pose a challenge if you don’t have someone to push your wheelchair. Biring, 22, says zigzag ramps, those designed in a tight winding shape, are too steep for some people in wheelchairs to handle. Straight ramps allow the user to take a bit of a run at it and the building momentum makes them easier to climb. “Forget the zigzag, have a straight ramp go through,” he says. Public places, such as churches and banquet halls, can also pose mobility problems. Biring says that many older South Asian banquet halls lack elevators. At one wedding,
Onkar Biring, 22, says despite the major advances that have been in terms of accesibility, it’s the smaller things that can lead to frustrations.
Embrace giving. Join the fight against cancer. The Canadian Cancer Society is your best investment in the cancer cause. Your courageous gift brings hope to thousands of people by funding outstanding research projects every year. A gift in your Will, stock or cash is tax deductible and goes directly to the fight against cancer. For immediate attention, please contact Toni Andreola at tandreola@bc.cancer.ca or 1 800-663-2524. Learn about the Estate Tax Eliminator Clause and request a free copy of Your Personal Estate and Will Planning Guide.
Kevin Connell with his wife, Mariette. Kevin is now in remission after treatment of a multiple myeloma, a rare cancer.
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www.cancer.ca/bc/legacy
thenownewspaper.com • POSSabilities • Volume 1, Issue 5
/PA13
News
DQ’s ‘one-armed bandit’ wins $36K settlement Cheryl Chan Postmedia News
A woman with a disability who said she was called a “one-armed bandit” by her coworkers at a fast-food restaurant was awarded more than $36,000 by the B.C. Human Rights Tribunal after it found she was fired because of her disability. Linda Vernon had been the night supervisor at a Dairy Queen in 100 Mile House for about eight months when she received a termination letter in May 2009. She alleged she was fired because of her physical disability and that the manager, Kelly Brown, and another employee, Michelle Brown, were “gunning for her.” The pair went out of their way to “sabotage” her by leaving boxes for her to break down and deliberately closing the lids on garbage containers, which required her to reopen the lids repeatedly, said Vernon — tasks that put extra pressure on her arm. She also testified Kelly Brown would leave sinks full of greasy cold water and uncleaned cups and trays for her before her shift. Kelly Brown testified she received complaints about Vernon taking extended breaks and not washing her hands, and that Vernon allegedly gave younger staff free food and stole products from the company.
But Heather MacNaughton, the tribunal member who presided over the case, found testimony from Kelly Brown, Michelle Brown, and operations supervisor Craig Slater to be inconsistent and not as credib l e a s Ve r n o n’s t e s t i m o ny a n d t h e testimony of her witnesses, which included a former manager and a friend who was also a regular customer. In her written decision released Monday, MacNaughton found both Kelly Brown and Michelle Brown “engaged in a concerted effort to have Ms. Vernon resign from the Dairy Queen.” “I also conclude that Kelly Brown’s and Michelle Brown’s actions toward Ms. Vernon amounted to harassment based on her disability,” said MacNaughton. “I conclude that (they) provided misleading information to Mr. Slater who, relying on that information, without any investigation of its accuracy, decided to terminate Ms. Vernon.” The tribunal ordered Kelly Brown, Slater, and Howatt Enterprises, which operates the restaurant, to pay Vernon $21,060 in lost wages and $15,000 for injury to her dignity. Michelle Brown was not named as a respondent in the case. Vernon testified being called a “onearmed bandit” was upsetting because she
Linda Vernon alleged that she’d been fired from a restaurant in 100 Mile House because of her physical disability, among other reasons. was proud of how she had coped with her life-long disability, raising a family and successfully holding down jobs in the past. She said she has suffered financial hards h i p a s a re s u l t o f t h e l o s s o f h e r
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PA 14/
Volume 1, Issue 5 • POSSabilities • thenownewspaper.com
Vancouver Adapted Music Society project
‘In your face’ video focuses on music therapy Francois Marchand Postmedia News Service
Dustin Bentall (left) and Barney Bentall flank singer-songwriter Kristina Shelden, who found her way back into making music with the help of Vancouver Adapted Music Society (VAMS) following a spinal-cord injury. Jenelle Schneider, Vancouver Sun Photo “Shooting the video was really awesome,” said singer-songwriter Kristina Shelden, who can be seen singing harmonies alongside upand-coming songstress Adaline. Shelden, 26, bounced back from a spinal cord injury a few years ago and found her way back into making music with the help of VAMS. The organization was instrumental in getting Shelden working with producer
Bobbi Style, who assisted her in recording some of her songs. “I really love that the idea behind the video is to bring awareness,” Shelden said. “Not to sound negative, but it’s ‘in your face’ and that’s actually kind of important because it’s really easy to just forget about it. It’s really great for people to have that visual stimulation right there in front of them.”
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Music can do great things, none of which is more important than the simple act of lifting you up and giving you a boost. The Vancouver Adapted Music Society certainly knows the crucial role music can play as therapy. Founded in 1988 by former mayor Sam Sullivan and Dave Symington, both quadriplegic musicians, the organization has been instrumental in supporting and promoting musicians with disabilities in the Vancouver area. For the second year running, VAMS, the Canadian Music Therapy Trust Fund and Vancouver radio station The Shore 104.3 FM have teamed up for Music Saves, an award-winning charity program. It’s aimed at producing a music video meant to inspire musicians with disabilities by highlighting abled and disabled artists from in and around Vancouver covering a well-known song. The song selected for Music Saves II was Dave Mason’s “Feelin’ Alright,” and the video, premiered Nov. 3 at a Vancouver nightlucb, features a host of renowned talent including Jim Byrnes, Dustin and Barney Bentall, Dan Mangan, the Odds, Kuba Oms and more.
At the same time, the video is a bit of an ode to Vancouver. Shot last summer in a number of outside locations on a bright, sunny day, the video jumps back and forth between each of the performers singing solo but mixed together. “Yeah, it kind of all came from that idea of ‘Playing for Change’ that was done all over the world,” Shore 104 assistant program director Patrick Zulinov said. “This is focused on our city, the musicians and music therapy happening here. “We wanted to have a good upbeat song and something that most of the artists knew how to play,” Zulinov said. “It had to be a recognizable song for everybody. We wanted the song to show how music affects people and makes them feel better and bonds them together no matter what their ability is, where they’re from, their race, their social class or whatever. Music is a binder for a lot of people and a great form of therapy.” “I didn’t feel my ‘disability’ at all that day,” Shelden said. “I was really tired because of the ‘disability,’ but being in that environment, it really brought me out and allowed me to ignore what was going on. It’s important to remind people what we have to deal with and for them to get that we can still do what we want to do. If we put our minds to it, we can conquer those challenges.”
thenownewspaper.com • POSSabilities • Volume 1, Issue 5
/PA15
What do you say when you see someone like Emin?
Hi Emin. For some people with developmental disabilities, “Hi” is a big deal. For Emin, Hi means “you see me.” Hi means “I belong in our community.”
So, start with “Hi” and see what happens. We all have a role to play in the safety of our fellow citizens. By just acknowledging an individual with a developmental disability, you can help that person feel included and safer. So don’t worry about saying the right thing. Just start with “Hi.” It’s a small word with big results.
Please share you inclusion stories at:
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www.startwithHi.ca
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Volume 1, Issue 5 • POSSabilities • thenownewspaper.com
We Believe in You. Sprott-Shaw Community College has been training students in BC for over 107 years. We want you to be a success story too!
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Health Care Assistant Program (Formerly Resident Care Attendant Program) Health Care Attendants and Community Health Workers have an important contribution to make to BC’s Health Care system. The HCA program at Sprott-Shaw is current and relevant to the complex and changing health practice settings in which graduates will work. Includes: Crisis Prevention Management & Palliative Care
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