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C e r e b r a l P a l s y A s s o c i a t i o n o f B r i t i s h C o l u mbi a

The Roundtable
WINTER 2004

CPABC celebrates 50 years in BC
The CPABC began in 1954, thanks to a group of concerned parents who wanted the best possible opportunities for their children living with Cerebral Palsy. Today, we provide: support, education and information to over 12,000 people across BC living with CP; as well as to; families, professionals, students, other organizations and community groups. In our recent strategic planning session we decided that the association is like a tree with the CP community as the soil and roots. Our services are the branches which are held together by the trunk which is communication. This encouraged us to develop a new mission statement which we like to think of as the three ‘R’s: ⇒To raise awareness of Cerebral Palsy in the community ⇒To assist those living with Cerebral Palsy to reach their maximum potential ⇒To work to see those living with Cerebral Palsy realize their place as equals within a diverse society.

Inside this issue:
Letter to Liberal Party Tips for travelling in wheelchairs CPABC Clothing Drop box locations Classifieds Robert Latimer moves A dad’s story Networking Group Membership Information 2 3

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The CPABC is like a tree. The CP community is the roots and programs make up the branches.

In our fiftieth year we are also doing a new fundraiser (based loosely on the stationary bike race which you may remember). More on this in the next newsletter.

President’s message – CPABC working on anti-fraud campaign
By Carol Stinson, One of the most frustrating things we have to deal with at the CPABC is people who “fundraise” using our name in the community. These fraudsters go door-to-door, shake cans in front of liquor stores, beg on street corners, harangue folks on the phone and generally make a nuisance of themselves. A week doesn’t go by when we are not called by someone complaining about aggressive fundraisers. We would like everyone to know that we never have, and never will take part in any of these types of fund raising activities. If you are ever approached by someone raising funds for “little children with cerebral palsy” don’t hand over any money! You should tell the person you would like to find out some more information and get an address where you can mail a donation. Then you can inquire with the Better Business Bureau to find out if the “charity” is

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The CPABC sent the following letter to all British Columbia Liberal MPs
December 2, 2003

Subject: We need commitments to Canadians with Disabilities in the Next Speech from the Throne
British Columbians with disabilities and their families are aware that the Liberal Caucus will meet in Ottawa on December 3 to discuss priorities for an expected Speech from the Throne and a new Liberal government agenda. As you will know, the United Nations has declared December 3rd as an International Day to recognize Persons with Disabilities, a day when governments and civil society can re-commit to the full human rights and inclusion pf persons with disabilities. As you deliberate on December 3rd, we urge you to follow the lead of Mr. Martin in his Liberal Convention acceptance speech – to take down the barriers in Canadian society faced daily by people with physical and mental disabilities. A brief snapshot tells a story of the 14% of Canadians who are disabled and live without the social foundations that Mr. Martin is committed to building for all Canadians: • 40% of children with intellectual disabilities are not yet fully included in regular education • 20,000 people with disabilities are confined unnecessarily in institutional care • The majority of working age adults live in poverty and are unemployed or not in the labour force • 60% of the 3.5 million adult Canadians with disabilities need assistance from others. Over 60% of this group receives their assistance from family members. • Over 50% of parents with children with disabilities indicate their employment is negatively impacted because of their unpaid caregiving responsibilities • Among children with disabilities, over 30% have parents who indicate they need back up support. The Cerebral Palsy Association of British Columbia (CPABC) is a provincial organization working to advance the human rights and inclusion of people living with Cerebral Palsy and their families. We are the knowledge centre for cerebral palsy in British Columbia supporting individuals, families, caregivers, professionals, students and organizations that want to know more about Cerebral Palsy. Today, there are between 8000 - 12000 people across the province of British Columbia who live with Cerebral Palsy. We believe there are historic opportunities for a new liberal administration to deliver on the promises to advance the place of people with disabilities in Canadian society. We believe a Speech from the Throne should commit the Government of Canada to: • Work with all levels of government and sectors to make Canada a leader in building an inclusive society. • Work with provinces and territories to establish a coordinated disability supports investment strategy to ensure people with disabilities and their families have the disability-related supports (personal assistance, aids and devices, etc.) to ensure their active citizenship in communities, education, employment, the social, economic, and cultural life of Canada. Priorities should include aboriginal persons, those confined to institutions, and young people in transition to adult life. • Deliver on long-standing promises to create a comprehensive labour market strategy for persons with disabilities, including: new investments in the now agreed provincial-territorial multi-lateral framework for Employability Assistance for Persons with Disabilities; leadership by the federal government in the public service and federally-regulated workforce; a renewed and enhanced Opportunities Fund that demonstrates innovation in creating inclusive workplaces; and a move to negotiating labour market agreements with provinces and territories that include specific measures for persons with disabilities. • Take leadership to provide assistance to the many family and unpaid caregivers who are the front-line of support for persons with disabilities and seniors – by: 1) exploring ways that the EI system could support employees who must take time to provide unpaid support to their family member; 2) examine how CPP could support family members (mostly women) who stay out of the paid labour market for many years to provide full time support to a family member with a disability; 3) explore options for reforming the Canada Labour Code to protect workers who take time from paid work to provide unpaid support to family members. • Ensure an inclusive cities agenda with measures for inclusive built and social infrastructure • Ensure measures for childcare and early childhood education are fully inclusive of children with disabilities. • Commit Canada’s foreign policy and international aid strategies to advancing our values of full inclusion of persons with disabilities. We wish you well in your deliberations. Know that British Columbians with disabilities and their families are trusting in your leadership. If you would like further information, please contact me. I can be reached at: Phone: 604-515-9455 Toll Free: 1-800-663-0004 Fax: 604-515-9466, Email: info@bccerebralpalsy.com Sincerely, Carol Stinson, President, Board of Directors Cerebral Palsy Association of British Columbia

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Safety tips for people for travelling in wheelchairs
It is surprising how frequently and/or their aides and friends and family members should always people who are traveling in vehitake steps to check the passenger's safety. Here are some useful cles while in wheelchairs are intips: jured as a result of not being 1. Make sure you know your own chair and know where the tie-downs properly secured firstly in the are supposed to go. If you are uncertain, consult with your wheelchair wheelchair, and secondly, in the shop as. to the best places to place the tie-downs. A good idea is to vehicle. mark your chair with a felt marker showing where the tiePart of the reason for this situadowns are supposed to go. tion is that there are no 2. Never tie down on a removable part of the chair. This laws on how to secure includes clip-on seats. people traveling in pri3. Never get in a vehicle without a seatbelt, This does vate vehicles. Another not mean just the wheelchair seatbelt. Make sure your vefactor contributing to hicle is equipped with a seatbelt bolted to the floor. these accidents is 4. Make sure your seatbelt goes over your body, not the fact that many over arm rests on your chair. people modify their 5. People with higher spinal injuries should keep a Safety first – especially in moving vehicles wheelchairs to imstrap with them to keep their upper body in place. Alprove their wheelways ask your attendant to put your chest strap on. ing power and to save wear and 6. Do not sit too close to the seat in front of you. If the vehicle tie tear on their joints and shoulcrashes or comes to a sudden halt, some movement will be inevitaders. Unfortunately, these modible. If you are too close to an object, even a small amount of movefications make the chairs more ment can cause injury. difficult to secure. Further, many 7. Before you start, try to rock your chair back and forth. If it rocks, it professional drivers are not well is not tied in properly. trained in methods of securing (Thank you to the Burnaby Association for Community Inclusion for travelers in wheelchairs. these helpful tips) People traveling in wheelchairs

CPABC changes clothing program to drop-off only
The CPABC regrets to announce that we are no The current drop-off locations are: longer able to pick up clothing at residences as the ♦ Champlain Heights Community Centre home pick-up program is too expensive. ♦ Vancouver Aquatic Centre We are working hard to develop new locations for ♦ Kensington Community Centre clothing drop-off. The CPABC is still a partner ♦ Riley Park Community Centre with the Salvation Army ♦ West End Community Centre which means that all of the ♦ Britannia Community Centre CPABC drivers only pick up at money raised goes to a notdrop box locations for-profit organization.

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WINTER

THANK YOU to our donors ! You are the cornerstone of The CPABC
Ron & Jan Tyson Glen De Rosenroll Annetta J. Schell Joan Gibson Dorothy-Lou Stephens Lesley McGibbson Sauder Industries Ltd. Dennis Heinekey Joseph Peters Margaret E. McElroy Glen Holmgren Louise M. Smith Mable Baker Barry Tietjen Ronald W. Jacques United W. of Shuswap

REGISTER FOR YOUTH EXCHANGE BY MARCH 1, 2004
The Active Living Alliance for Canadians with a Disability is hosting the fourth annual Youth Exchange in Ottawa at Carleton University from June 29- July 4, 2004. The Youth Exchange is a celebration of the diversity of disability and Canadian culture, and allows delegates the chance to interact with their peers from across the country; to develop communication and advocacy skills; and to participate in activities such as rock climbing, sledge hockey, sailing, and swimming. If you are a young Canadian between the ages of 14 and 17 as of June 1, 2004, please visit the web site: http://www.ala.ca/home_page_e.cfm or call the CPABC office at 604.515.9455 to request an application.

United Way of Toronto United Way of LM

United Way of Victoria Dave Lede Foundation Roy W. Kendall Bryan Robinson John W. Gouge Margaret McCuaig Wawanesa Judy Briton Emily Sue Rothwell V. J. March Foresters Judge Herman Litsky Lou Crossie Travel Haebler Construction Carol Cheslock Eileen Reppenhagen Dave Fairhall Jerry Lam Fred W. Cole

Adult Networking Group We want to hear from YOU! Starting soon: Adult Monthly Networking Group for adults with CP living in the Vancouver area. An evening of stories, fun, information sharing and support. We need your input for location, time, and day. Please call Tammy van der Kamp at the office for more information.

Support the CPABC by playing Bingo at Burnaby Bingo Country Bingo Hall Middlegate Mall

Feb. 02 , 2004 & Mar. 22, 2004
7155 Kingsway Burnaby

The CPABC holds a certificate of affiliation under the GPEB of the Ministry of Public Safety and Solicitor General

Home for Sale South Delta, BC
3700 Sq. ft Wheelchair accessible home available for sale as of December 2004. It has 5 bedrooms and 5 bathrooms with one room on ground level which is fully wheel- chair accessible including an ensuite with wheel-in shower. Kitchen has been recently renovated with all new cabinets and Corian counters and all Kitchen Aide appliances. Beautifully landscaped in a very beautiful quiet neighborhood. Only 14 years old, solid home. Excellent condition. Please call (604) 274-7876 to view property.

Thank you for reading The Roundtable

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Robert Latimer moves to BC In November, 2003 Robert Latimer was transferred to a minimum security prison in Nanaimo, BC. The CPABC is categorically opposed to clemency for Robert Latimer. Earlier this year Catherine Frazee, on behalf of the Canadian Association for Community Living, challenged the United Church’s intention to explore executive clemency for Robert Latimer. Her statement (below) is a very thoughtful look at the issue of clemency. The United Church has referred the matter back to staff for “further consultation and action”.
On behalf of the Canadian Association for Community Living, a federation of provincial and territorial associations comprising 420 local associations and representing over 40,000 parents, siblings and disabled family members, many of whom are active members of the United Church of Canada, I seek the opportunity to address this Council upon the theme of hope, as it relates to a subject of deep concern to our Association. As a woman with a significant disability, and as a representative of the Canadian Association for Community Living, I find myself compelled to speak in opposition to the resolution from Saskatchewan Conference for executive clemency for Robert Latimer, as referred to in the Moderator's Accountability Report. The killing of Tracy Latimer was the extinguishing of hope - the intrinsic hope for her life and what she would make of it, and the hope emanating from her life, the hope for what others, her parents and siblings included, might become in and through their relationships with her. I urge you to reconsider your position on the question of clemency, remembering as you do so that Robert Latimer still today steadfastly holds to the conviction that he did no wrong. Remember, please, his insistence that he was entitled to take his daughter's life. You cannot support clemency for this man without endorsing this position. You cannot pretend that the symbolic act of executive clemency will not imperil the lives of other disabled children who, like Charles Blais, Ryan Wilkieson, Katie Lynn Baker, Chelsea Craig and others have been and will be killed by parents who believe they are doing no wrong. You cannot ignore the social and ethical context within which advocacy toward clemency for Robert Latimer takes place. That context is one of deep and dangerous ambivalence about whether it is right or wrong to end the lives of people with significant disabilities. To members of the Saskatchewan conference who have brought this resolution forward to this national body, I urge you – Do not let your loyalties to this individual blind you to the ethical implications of a father's deliberate choice to end his daughter's life and his continuing defense of that choice as fully justified. Healing cannot begin until Robert Latimer accepts the terrible truth of his wrongdoing. To your distinguished moderator, who in her Accountability Report acknowledges the strong opposition to this resolution voiced by disability organizations across this country, I most respectfully ask – Why would the United Church choose to ignore the heartfelt petitions of some of Canada’s most marginalized citizens? The position which we understand this Church to be taking, supporting clemency for the man who unrepentantly admits that he killed Tracy Latimer, is a violation of the principle of hope that you have committed yourself to at this Council. It is instead an affirmation of despair and an invitation to moral anarchy. To all of the members of this Council, I urge you to reflect as spiritual people upon the ease with which you project upon the figure of Robert Latimer your own deeply held secret fears about becoming or being disabled or of bearing a child who cannot speak, who is medically fragile and who tests your capacity for hope and love. Until you can truly conceive of the full hope and meaning of Tracy Latimer's life, you will remain locked in the blinkered bias of your too-able bodies. I urge you to struggle together to address the deeper problems that are uncovered in this moment. Catherine Frazee,Chair, Values & Ethics Task Force

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WINTER 2004

C P A B C B O A R D

CAROL STINSON, (President) Burnaby SIMON COX (Vice President) Vancouver JUDY BRITON (Treasurer/Secretary) North Vancouver GAGUN CHINNA Vancouver

By Conrad van der Kamp

Recently I was asked: so what’s the special role of a Dad in the life of a child with CP? Well, what’s the role of a Dad in any child’s life? It’s all about providing, safeguarding, teaching, being proud, hugging tight. And it’s also about encouraging from the sidelines, standing back from stumbles, making room, letting go. Letting go is pretty tricky, especially when the child faces unusual obstacles and a little help would help so much. Do you want a hand with that sleeve? You want me to cut that sandwich? How about I proofread that essay? I know you can do that transfer, but it’s so much faster if I just…And so on. When our daughter was little I would swing her in and out of cars, into her wheelchair, into bed. When she got older, I could still lift her in and out of cars. It was just easier, right? Faster and easier. Well yes, maybe easier, but maybe not so smart. Not so smart for my back in any case, but also not so smart as a way to affirm the young woman that she had become. So I had to learn, and am still learning, to adapt to her rhythms, her timing. Learning to let her lead. It was the same with schooling. I wanted to wade in, to shape up everybody, to have them really see this soft spoken plucky girl instead of the wheelchair, to guard her from the offhand cruelty, from casual inattention, from the well meant but patronizing gesture. And at the same time I wanted to constrain her to act “normal”, talk “normal”, disappear into the crowd. Well, I couldn’t accomplish either of those, and in the end I came to acknowledge that she was pretty good herself at dealing with all the indignities, pretty darn good at skippering to her goals, pretty awfully darn good at reading people along the way. CPABC So now I sit at the table in her cheery, bright Pick-upapartment, while one of the attendants she has hired is bustling about, and she gives me Service instructions. “Sometime, if you want to, Call: Dad, I could use…..”, and 604.515.9467 pretty soon I’m fixing a loose cupboard door, or maybe I’m just digging some bulbs into her patio border, happy that I’m still in the game. I can still fix things at least a little bit. Then the thought crosses my mind that maybe she figures she’s the one helping me by giving me some tasks. I straighten up and scratch my head for a moment, trying to get used to that idea, and then I get on with the digging.
Clothing

JENNIFER KINGSBURY O Port Moody

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JONN OLLDYM Vancouver RICHARD RHEAUME Vancouver DON RENAUD Burnaby PETER SHIPLEY White Rock YOSHI TANABE Vancouver

Wanted: Physicians/Medical Professionals We have recently received a number of inquiries from people looking for physicians or other medical professionals experienced in treating people who live with Cerebral Palsy. We would like to compile a list of medical professionals from all over the province to pass on to people who need this information. If you know someone you can recommend, please call: Tammy van der Kamp at 604.515.9455

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Lower Mainland Family Support and Information Group
The Cerebral Palsy Association of BC, The Developmental Disabilities Association and The Richmond Society for Community Living are co-sponsoring support and information meetings for individuals with disabilities and family members of people with disabilities.

***Please post and share*** When
Thursday January 8 7 – 9 PM

Where
Richmond Caring Place 7000 Minoru Blvd Richmond

Topic
Pat Tesan from Planned Lifetime Advocacy Network will provide Spinoza Bears & discuss Will and Estate Planning. RSVP to have your bear ready to take home. Eileen Reppenhagen CGA will explain

Tuesday February 17 7 – 9 PM

3455 Kaslo Street Corner building,18th & Kaslo (Near Sunnyhill Hospital) Vancouver

2003 personal income tax measures for persons with disabilities and those who care for them. Send us your tax questions ahead of time so Eileen can research your answer

Thursday March 11 7 – 9 PM Tuesday April 20 7 – 9 PM

Richmond Caring Place 7000 Minoru Blvd Richmond 3455 Kaslo Street Corner building,18th & Kaslo (Near Sunnyhill Hospital) Vancouver

terim Authority and Ministry for Child and Family Development. (Speaker to be announced) Leisure Fair: Come out and get valuable information about what your son or daughter (children and adults) can do for fun this summer! Many organizations will be available to discuss their programmes with you and your family.
To be Announced (We welcome your suggestions!)

Update on changes regarding the In-

Thursday May 13 7 – 9 PM

Richmond Caring Place 7000 Minoru Blvd Richmond

For more information or to have your name put on our email reminder list or if you require child care (please request at least one week in advance), Please call: Feri Dehdar at CPABC 604.515.9455 We hope to see you there!!

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Enquiry CP: 1.800.663.0004
Printed information from CPABC: - Speak Up! — Advocacy tips - Guardianship Legislation - BOTOX — treatment for CP - HBOT — Hyperbaric Oxygen Therapy - Understanding Special Education - Planning Your Will - Equipment Funding Package - Early Intervention for Cerebral Palsy - CSIL Program - Welcome Kit — CPABC services - Putting the Puzzle Together — a tool for parents and educators-$30.00 - Living with CP — Resource manual for persons living with CP -$10.00

The Roundtable is the official newsletter of the CPABC. The CPABC and the editor of this newsletter take no responsibility for, nor do they necessarily agree with, the opinions contained in this publication. Contributing Writers: Carol Stinson (editor), Feri Dehdar, Tammy van der Kamp Cerebral Palsy Association of British Columbia 102-317 Columbia St. New Westminster, BC V3L 1A7 Phone: 604.515.9455 Toll-Free (Enquiry CP): 1.800.663.0004 Fax: 604.515.9466 Email: info@bccerebralpalsy.com Office Hrs: 9 AM to 5PM, Monday to Thursday

Members with expertise are available for public speaking engagements. Call the office for more details

We’re on the web: www.bccerebralpalsy.com

Now…more than ever before – your membership will help people with Cerebral Palsy to

“Realize equality in a diverse society!”
Become a member today!

Name: Address: City: Email Address: Postal Code: Phone No:

Membership Options: Individual $20 Family $30 Organization $50 Donation: I would like to make a donation to support the services and programs of the Cerebral Palsy Association of British Columbia. Income tax receipts are only issued for donations of $10 or more, unless requested. $100 $75 $50 $25 My choice: _________ Method of Payment: I have enclosed a cheque payable to the CPABC or: Visa #:________________________________ Expiry Date: _____________________ Name on Card: _________________________ Today’s Date: ____________________ Signature: _____________________________ Please mail to: Cerebral Palsy Association of British Columbia 102 – 317 Columbia Street, New Westminster, BC V3L 1A7 Charitable Registration Business Number 10690 4204 RR0001