Albertaâ€™s Health & Lifestyle Magazine for People with Spinal Cord Injuries & Other Physical Disabilities
Publications Mail Agreement #40011327
Summer/Fall 2011 Volume 26 Number 3
26 The Landmark Litigator
The Editor, Spinal Columns Canadian Paraplegic Association (Alberta) #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 (780) 424-6312
Ron Cummings has been a major figure in Canadian litigation law over the last five decades. FEATURE STORY
30 Health Care Evolving
In the News
Meet the Staff
CPA (Alberta) Advocacy
History 20 Transportation, Then and Now 22 Transportation: The Last 60 Years 23 Key Dates in SCI History 24 Building Accessibility Sports 32 The Crip Club Jumpers 33 What Comes After Olympic Gold? 34 Spotlight - Home Health Care 36 Fitzone Health 37 Healthy Living Canada 38 Neuropathic Pain 40 Bladder Cancer & SCI 24 Opinion - From My Perspective Community 43 Self-Service Discrimination 44 An Awakening to Accessibility 45 Edmonton Mayor’s Awards
Publications Mail Agreement #40011327
Letters to the Editor
Technology 14 Searching for a New Van 16 Power Wheelchair Platforms
Material printed in Spinal Columns may not be reproduced without written permission from the Canadian Paraplegic Association (Alberta). We neither endorse nor guarantee any of the products or services advertised within Spinal Columns. Readers are strongly urged to thoroughly investigate products/companies before purchase. Spinal Columns is available in alternate formats by contacting our office as listed above.
Return undeliverable Canadian addresses to: Canadian Paraplegic Association (Alberta) #305, 11010 - 101 Street Edmonton, AB T5H 4B9 E-Mail: firstname.lastname@example.org
Innovations 10 Surfing for Solutions 12 Comfortable yet Practical 13 New Products for You
Executive Editor............ Larry Pempeit Assistant Editor........... Betty MacIsaac Layout/Design.....................Aaron Yeo/ Kyle Thompson Spinal Columns is published four times a year by the Canadian Paraplegic Association (Alberta). Advertising rates available upon request. Ideas, submissions, requests, suggestions and letters are always welcome. Address them to:
4 Editorial The history of CPA (Alberta)
Jean Ursulak reflects on her twenty years as a registered nurse working in the area of spinal cord injury rehabilitation.
Recognition 46 CPA Golf Tournaments 48 Rick Hansen’s Honourary Degree 52 Regions - What’s New in Alberta 54 In Our Library Travel 55 Instanbul By Electric Chair 56 Accessibility on the Agenda 58 William Watson Lodge Spinal Columns
nce a ga i n, su m mer h a s quickly come and gone. I remember when I was growing up when the long, hot days of summer seemed to last forever. Now it seems the days and weeks zip by with ever increasing speed. As we celebrate the 50th Anniversar y of the Canadian Paraplegic Association (Alberta), we are reminded, as well, of how quickly time passes. As a continuation of celebrations around our 50th anniversary of CPA (Alberta), this issue of Spinal Columns contains articles about the history of transportation, a reflection by Ron Wickman about changes in accessibility, as well as an interview with retired litigator, Ron Cummings as he reflects on his years as a personal injury lawyer with Cummings Andrews Mackay. Also included in this issue is important information about bladder care, an inspiring story about skydiving by CPA (Alberta)â€™s own Kuen Tang, as well as other information that we feel will be of interest to our readers. Thanks to a generous donor, we have been able to fund several 50th anniversary celebrations throughout Alberta, including open houses across the province. For more information regarding open houses across Alberta and other activities, check out our website at www.cpa-ab.org or find us on our Facebook page. For our next issue of Spinal Columns, we would like to hear from you. What do you think Alberta would be like today if there were no CPA (Alberta)? Have we made a difference in your life, or in your community? While gains have been made in many areas, some issues remain, including the top three priorities identified by stakeholders, these being: affordable accessible housing; home care/attendant care; and adaptive equipment and devices. CPA (Alberta), in collaboration with the Alberta Spinal Cord Injury Strategy, is working hard to implement changes that will help to address these issues, as well as many others. What will our world look like 50 years down the road? There are lots of predictions but, in reality, no one really knows. At CPA (Alberta), we plan to remain true to our mission statement, which is to assist persons with spinal cord injuries and other physical disabilities to achieve independence, self-reliance and full community participation.
Executive Director CPA (Alberta)
Canadian Paraplegic Association (Alberta) Toll Free: 1-888-654-5444 www.cpa-ab.org Find us on Facebook and become a fan! Watch videos on our Youtube channel: www.youtube.com/user/cpaalberta HEAD OFFICE #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 Telephone: (780) 424-6312 Fax: (780) 424-6313 E-mail: email@example.com Executive Director: Teren Clarke SOUTHERN DISTRICT OFFICE 5211 4 Street NE Calgary, AB T2K 6J5 Telephone: (403) 228-3001 Fax: (403) 229-4271 E-mail: firstname.lastname@example.org RED DEER OFFICE #103, 4719 - 48th Avenue Red Deer, Alberta T4N 3T1 Telephone: (403) 341-5060 Fax: (403) 343-1630 E-mail: email@example.com GRANDE PRAIRIE OFFICE #104, 9715 - 105 Street Grande Prairie, Alberta T8V 7X7 Telephone: (780) 532-3305 Fax: (780) 539-3567 E-mail: firstname.lastname@example.org LETHBRIDGE OFFICE 1274 3 Avenue South Lethbridge, Alberta T1J 0J9 Telephone: (403) 327-7577 Fax: (403) 320-0269 E-mail: email@example.com MEDICINE HAT OFFICE 26-419 3rd Street SE Medicine Hat, Alberta T1A 0G9 Telephone: (403) 504-4001 Fax: (403) 504-5172 E-mail: firstname.lastname@example.org ST. PAUL OFFICE Box 653 St. Paul, AB T0A 3A0 Telephone: (780) 645-7147 Fax: (780) 645-5141 E-mail: email@example.com LLOYDMINSTER OFFICE 4419 52 Avenue, Lloydminster, AB T9V 0Y8 Tel & Fax: (780) 875-1046 E-mail: firstname.lastname@example.org FORT McMURRAY Gregoire Park Centre 194 Grenfell Crescent Fort McMurray, AB T9H 2M6 Tel: (780) 743-0307 Fax: (780) 743-4563 E-mail: email@example.com WEST CENTRAL OFFICE PO Box 128 Wabamun, AB T0E 2K0 Tel: (780) 892-3431 Fax: (780) 892-3431 E-mail: firstname.lastname@example.org CPA (Alberta) BOARD OF DIRECTORS Aaron Miller, Chair Dale Williams, Past Chair Scott Sankey, Treasurer Maxwell Brunette Lisa Crown Harvey J. DeCock Kent Hehr Bill Hendsbee Timothy Hill Martin Purvis Ray Royer Ned Shillington Eleanor Sugarman
Dear friends and colleagues of the Rick Hansen Institute, We wanted to share with you another milestone in the advancement of the Rick Hansen Institute’s mission. Paramount to RHI’s success are international collaborations with top research facilities. The main elements of the collaboration include shortening the discovery time for new treatment methods, developing a shared data platform and clinical trials network, and identifying best practices. We are pleased to announce that RHI has signed a memorandum of understanding with the James J. Peters VA Medical Center (JJPVAMC), in the Bronx, New York. This collaboration will work specifically with the U.S. Department of Veterans Affairs investigators from the Rehabilitation, Research & Development National Center of Excellence on the Medical Consequences of Spinal Cord Injury. Our organizations will work together to help reduce the incidence and severity of permanent paralysis resulting from spinal cord injury, increase the restoration of physical function following SCI and reduce the incidence and severity of secondary complications associated with SCI. More specifically, there will be particular emphasis on the development of collaboration relating to international clinical trials, translational research, and implementation of best practices. RHI has already signed research agreements with facilities in Israel, Australia, and China. The memorandum of understanding with the JJPVAMC is the first U.S. facility to collaborate with RHI. Sincerely, Bill Barrable
Hello Friends, Well if you think that things can’t get worse in my life, it did. In the last few months I’ve tried to hire Canadian caregivers. DISASTER! After 3 thorough interviews AND 3 training and orientation sessions, two caregivers left. Last week the third caregiver got sick and has other complications in her life. As a result, she left me stranded. She didn’t show up for her shift nor did she call. I didn’t know what to do. My other caregiver was on her honeymoon but she came back to help me. Now that’s dedication! I’m on a program under Alberta Health and Wellness called Self-Managed Care. There is no emergency backup pool of workers for people in this program. The advocacy community has tried for years to have this initiated but no luck. I was fortunate I had a friend who was able to help me. And I even had to ask my ex to help me. He did, which was a very awkward and humbling situation for me. I am writing this letter hoping that someone would know of a caregiver to fill these positions. Any help you can give me would be greatly appreciated. Thank you St. Albert Editors note: if you can help her please e-mail email@example.com. Have something on your mind you’d like to talk about? Need to let people know something important? Want to give us feedback on a specific article, or Spinal Columns as a whole? Send us your comments to firstname.lastname@example.org and we may publish it in an upcoming issue!
Community Living attendants The Community Living Attendant Training program is looking for volunteers! The CPA (Alberta), in partnership with several other Alberta organizations, is leading the development of a new program called Community Living Attendant Training. This program is community-driven and instructed by people with disabilities and community partners, based on the philosophy of consumer- and employer-directed care. This training program will last six weeks and incorporate theory and practical skills into the training to prepare students in providing a flexible array of supports specific to each consumer and employer’s unique independent living needs. We will be recruiting for the following volunteer positions: Classroom Instructors: teach one or more of the courses offered to students. Home Host Trainers: provide in-home experiences for the students and evaluate them. Classroom Observers: observe classroom discussion and provide personal experiences and feedback to enhance the students’ learning experience. If you would like more information on this program or volunteer opportunities, please contact Kuen Tang at (780) 4246312 or email@example.com.
WHEELCHAIR AEROBICS Finally, an exercise video everybody can use! Now if getting to and from a gym has stopped you from exercising as much as you like, this may be a solution for you. It’s a new exercise program for individuals with spinal cord injury. The folks at the National Center on Physical Activity and Disability (NAPAD) and the Rehabilitation Institute of Chicago have just put out the Tetraplegia DVD. This video provides a complete exercise program and features a 25-minute aerobic segment, complete with a warm-up and a cool-down, a strengthening segment, with participants using elastic resistance bands or free weights, and a flexibility and cool-down segment. The DVD also comes with a pocket-sized reference guide on exercise for individuals with tetraplegia. This resource can be used to complement the exercise video, or as a guide while exercising in your home or at the fitness centre. The video is not intended as an exercise prescription, nor should it be used in place of physical therapy or exercises prescribed by your doctor. It is just intended to incorporate physical activity into daily life. Also on offer is an exercise DVD designed for paraplegics as well. Both are available from the NCPAD website for only USD$16.99 — get a copy for yourself by going to www. ncpad.org/shop, or calling 1-800-900-8086. And for you old-school folks the videos are available in both DVD and VHS formats.
Online Resource Guide The CPA (Alberta) is proud to announce the upcoming launch of a new provincial online resource guide for people with physical disabilities launched in late summer 2011. The intent of the guide is to present information and options in a readily available format from a single access point. Our resources are currently focused on adaptive equipment and devices, attendant care, home care, housing, and transportation. We hope the implementation of this resource guide will decrease time and frustration in trying to allocate and access all the services and information physically disabled people need in order to fully participate in the community. We also believe in sharing the knowledge of people who have “been there and done that.” That is why we’ve created a place where you can leave comments and/or rate a product or service that you have tried. This information may be helpful in assisting others when selecting the resources they need. Special features include the ability to: • Search for resources and comments with your own criteria through a keyword search or select predetermined regions or categories. • Rate and/or view ratings on resources. • View and/or leave comments or feedback on resources. • Share resources with friends. • Print a list of resources in specific categories or regions. This initiative has been developed through the leadership of the Alberta Spinal Cord Injury Alliance, an initiative funded by the Alberta Government and supported through CPA (Alberta). We hope to continue to expand the guide to include other important topics such as education, recreation, and employment. The resource guide can be found on CPA (Alberta)’s current website at www.cpa-ab.org/resources. For more information or to place this link on your website, please contact Kristie Coulombe at firstname.lastname@example.org.
NEW AT THE RICK HANSEN INSTITUTE The Rick Hansen Institute (RHI) is pleased to announce the publication of a special August 2011 issue of the Journal of Neurotrauma on Acute Spinal Cord Injury: State-of-the-Art Reviews (http://www.liebertonline.com/toc/neu/28/8). The issue contains 17 articles on such topics as pre-clinical research on cellular transplantation therapies, pre-hospital care, timing of decompressive surgery, assessment of disability, cardiopulmonary management, and the impact of specialized centres of care. A multidisciplinary team of researchers and clinicians, under the leadership of Dr. Michael Fehlings, has addressed the most clinically relevant issues within the acute care of spinal cord injury. Their evidence-based recommendations will help to develop guidelines for care, translate pre-clinical research into clinical practice and drive novel research opportunities. The success of this work was made possible by the collaborative efforts of the acute SCI community and brings together a unique team of clinical epidemiologists, neurosurgical and orthopedic spine surgeons, basic scientists, rehabilitation specialists, and allied health professionals to achieve a common goal – improve the quality of care for people with SCI.
inthenews The RHI is also the first research centre outside of the U.S. to be invited to join the prestigious Consortium for Spinal Cord Medicine, which facilitates the development and distribution of clinical best practice guidelines across the international SCI medicine practice community. The Consortium’s work not only affects people living with spinal cord injury but can also help accelerate improvements in the care and treatment of many other related health issues we face here in Canada. RHI was selected to join the 20+ member Consortium because of its expertise in developing scientific, evidence-based clinical practice guidelines – essential resources for aligning the international medical community and an important area of interest for the Consortium. SCI is one of the greatest survivable catastrophes experienced by a human being, and it presents far-reaching consequences for individuals, families and the Canadian health care system. Identifying best practices in SCI treatment and promoting their wide-scale adoption by medical and allied health professionals will create opportunities to achieve better medical outcomes and reduce the stress and costs of care on the health care system.
PVA offers free SCI Publications The Consortium for Spinal Cord Medicine has published a new consumer guide, Sexuality and Reproductive Health in Adults with Spinal Cord Injury: What You Should Know, which explores a range of topics related to sexuality and sexual function after spinal cord injury. The consumer guide was developed with the belief that all people who want to be sexually active after SCI should have the knowledge they need to make that decision and be comfortable with their sex life whatever their level of injury. With straightforward facts and discussions of the wide range of topics affecting sexuality, the guide not only provides current medical information but can serve as a tool for making the conversation about sexuality after SCI easier to have. To download a free PDF of the Sexuality and Reproductive Health consumer guide as well as other publications go to www. pva.org/publications. For information on ordering hard copies or if you have any questions or comments, contact Rachel Hoeft at rachelh@pva. org or 202-416-7651.
CALGARy’s new wellness centre The CPA (Alberta) Calgary office is in the home stretch of finalizing an exciting new fitness program in its newly renovated facility. The facility will be known as SCI Fitness and Wellness Centre Calgary: An initiative of the CPA (Alberta) Calgary Office. The whole premise of this facility will be twofold. First, we want to offer this aggressive exercise program to individuals who live with a spinal cord injury. The concept of aggressive exercise is to assess the person below the point of injury and from that, design a personalized program that will focus on one’s overall fitness and wellness as it relates to their disability. Secondly, by participants enrolling in this program, we be-
A sneak peek at Calgary’s new Wellness Centre. lieve we can capture comprehensive and detailed information that will contribute to our research program headed by University of Calgary and Mount Royal University. While some of the wrinkles are still being worked out with respect to the research program and the teams conducting it, we felt it was time to reach out to individuals who may be interested in being a part of something that is a first for Alberta and possibly Canada. As a member of the CPA (Alberta), we wanted you to be the first to hear about this; as well as extend an exclusive invitation for consideration in being part of the SCI Fitness and Wellness Centre program. If you are a person who lives with a spinal cord injury and require further information, or wish to obtain a preliminary application package, please contact Marilyn Erho, Peer Coordinator, at 403.228.7434 or email@example.com.
IN MEMORIAM The Canadian Paraplegic Association (Alberta) would like to recognize the following individuals who have recently passed on. Ike Dyck Edmonton Kim Fouts Edmonton Eddie Herman Cold Lake First Nation Romeo Johnson Edmonton Liz Korol Edmonton Sophie McClelland Edmonton Lloyd Oegama Edmonton Dianna Lynn Ruttan Edmonton Vicky Shachtay Innisfail Will Smith Calgary Gilles Therrien Medicine Hat Judy Wapple Drumheller If you would like to make an In Memoriam donation, see page 34.
Janice Brownlee has been with the Canadian Paraplegic Association (Alberta) as Director of Finance for ten years. Her favourite part of working with CPA (Alberta) is the variety of work she gets to do, including finance, human resources, information technology, and fund development. In her professional career Janice has achieved a Certified Management Accountant designation. An interesting fact about Janice is that she spent seven years living and working above the Arctic Circle. Janice is married and has two children, Megan, 13, and Jack, 11, along with a goofy 100-pound Old English Sheepdog named Archie.
congratulations to Canadian Paraplegic Association (Alberta) Edmonton International Airport congratulates the Canadian Paraplegic Association on its 50th anniversary. EIA has been proud to partner with the CPA in their outstanding service to the community.
ADVOCACY The CPA (Alberta) is presently working on a number of projects that would increase the number of affordable accessible housing units in the province of Alberta. While there is no guarantee that any of them will become a reality, we are hopeful that the provincial government recognizes the need and will fund these projects.
Boyle Renaissance project This project has been on the drawing board for the past few years. It is now at a stage where it will be sent out to private developers to respond with a proposal to construct the building. It would be comprised of two floors of medical-oriented clinics and up to eight floors of affordable accessible housing with 30 of 90 units being wheelchair-adapted. Partners in this building would be the City of Edmonton, Métis Housing Corporation, and Big Stone Creek Reservation. The anticipated completion is in late 2013.
St. Luke’s project CPA (Alberta) is working with the St. Luke’s Anglican Church in Red Deer to hopefully develop a piece of property on Gaetz Avenue. The property would be comprised of some commercial space, non-profit office space and affordable, accessible housing. Grant applications are being submitted to funders.
Edmonton NGO Office project CPA (Alberta) is heading a group of non-profit agencies that work with people with disabilities in the development of an office building that would include up to 22 agencies. This project would include meeting rooms, lunchrooms, support services, and provide incentives for collaboration amongst the agencies. It would also be a benefit to individuals who want to access more than one service agency, saving them time and energy.
Advocacy CPA (Alberta) has recognized that there are many disability issues that have remained unresolved in our society. Some of the current issues are bank card machines that are unusable by wheelchair users and self-serve gasoline stations that will not serve gas to individuals who can’t pump their own gas. In order to resolve some of these issues, CPA (Alberta) will be reaching out to other disability-related organizations and many of the senior citizen organizations for a joint movement to resolve these issues.
Station Pointe project CPA (Alberta) is working with Communitas, a nonprofit housing development group that would like to develop a property in Edmonton, close to the Belmont LRT station. CPA (Alberta) is proposing that a portion of this property be developed into a non-profit office space and accessible, affordable housing project. This project would have the ability to become a cooperative equity-based housing project with a central location and excellent access to Edmonton’s transit system.
SCI SOLUTIONS INITIATIVE CPA (Alberta) is working on three housing initiatives with other community groups. They are to develop an award system for developers of accessible housing, an assessment tool for accessibility, and a model housing concept.
Lethbridge Family Circle This is a large-scale development in downtown Lethbridge, which would provide affordable office space to a number of community organizations. A business plan has been completed and the group is now moving ahead with securing funding. CPA (Alberta) is one of the partners in this initiative.
The Spinal Cord Injury Community Survey is the largest study of its kind in Canada among people with SCI. Once completed, it will become the largest repository of SCI data related to people living in the community. The primary intent of the survey is to confirm the most important SCI-specific needs of Canadians with SCI. It is also intended to determine how successfully the Canadian health and social services system are meeting those needs across the country. And, ultimately, it will create a clearer picture of where there is opportunity to improve in Canada’s support systems, so as to truly minimize disability and maximize the quality of life of Canadians with SCI. Be sure to visit the survey website and help steer how people with SCI are treated for not only tomorrow but for years to come!
www.myhealth.alberta.ca In this technical age, we often turn to the internet when we are shopping around for information, whether it’s for the purchase of an automobile, or the daily weather forecast. No matter what the search is for, it almost a lways turns up conf licting information. The same is true when searching the internet for health information. The vastness of the internet is what makes it valuable,
but it can also be over whelming — too many websites, each with different descriptions, preventions, treatment recommendations; each claiming to be an expert on this condition, or that disease. MyHealth is a government of A lber ta initiative in pa r tnership w ith A lber ta Hea lth Services. The information and tools you will find on MyHealth were developed in consultation with health professionals, and Albertans like you. So next time you are looking for health information you can really rely on, look no further than the MyHealth website.
www.voiceamerica.com Disability Matters with Joyce Bender. Imagine if once a week you could listen to a program that might improve your life as a person with a disability. Disability Matters with Joyce Bender is one such program. Joyce, the host, is a trusted disability advocate and Disability Matters is one of the first international talk radio shows focused on the employment and empowerment of people with disabilities. By tuning in you can hear prominent disability leaders from around the world discuss many of the various issues that affect all of our lives every day. The Disability Matters program is on the VoiceAmerica channel and website every Tuesday from 12 p.m. to 1 p.m. MST.
Moving up has never been easier. RAM Manufacturing Ltd. is a North American leader in the design and manufacture of vertical elevating products for residential and commercial buildings. We proudly manufacture the Trus-T-Lift and the UNI-VERS Crystal Elevator right here in Alberta. Trus-T-Lift’s smooth and quiet performance makes this light weight, dependable and versatile unit perfect for any residential or commercial application. The UNI-VERS Crystal Elevator can be installed in various two and three story homes and commercial buildings, such as schools, churches, apartments and senior citizens centres. Our lifts and elevators can be customized to accommodate new or existing buildings with little or no modification. Independent mobility is your connection to the rest of the world. It allows you to remain active, improving your quality of life. Here at RAM Manufacturing Ltd., we take your independence seriously, giving you choice and quality at an affordable price. CALL TOLL-FREE:
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email: firstname.lastname@example.org Spinal Columns 11
Comfortable Yet Practical by Barry Lindemann
Usually in this section of Spinal Columns we tell you all about a few cool products that can help make the lives of people with disabilities a little more manageable or fun. In this issue we’re telling you about a whole online shopping centre filled with such products called SkyMall.
if punctured, and require no more preparation than a quick microwave or a brief time in the freezer (they won’t freeze solid). The safe, non-toxic gel won’t dry out or harden, and remains flexible even at -28° Celsius. Wraps stay hot or cold for up to 40 minutes, move easily with you, and can be worn under clothing after physical therapy or strenuous exercise.
SkyMall is a multi-channel direct marketer offering highquality, innovative merchandise from top direct marketers and manufacturers through its SkyMall catalog and website. Filled with a lot of unique stuff, the SkyMall catalog is seen by approximately 88 per cent of all domestic U.S. air passengers reaching more than 650 million air travelers annually. And what’s fantastic about a lot of the products that are featured on their website and catalog is that a large number of them are perfect for people with disabilities who are looking for a lot of the same features in their product choices as busy travelers — compact, reliable, and that help you do a task in a simple way. The only negative I found in buying things at the SkyMall is the same as many other U.S.-based shopping websites: they charge a lot to ship to Canada. Check out just a few of the disability-related products I found at the SkyMall website:
skyrest travel pillow $29.95
foot alignment socks $19.95
Imag i ne bei ng able to sleep comfortably in any seat — including your wheelchair! Designed for folks sitting on airplanes this miraculous, wedge-sh aped t ravel pi llow ma kes even t he most uncomfortable spots downright pleasant. All you have to do is inflate the pillow and then simply lean forward and snooze. Skyrest deflates and folds into an easy-to-pack size and shape — perfect for throwing into a backpack.
Soothing relief for bunions, cramps, hammertoes, and just plain tired feet! Soft, fluffy fabric hugs your feet and aligns your toes to provide instant relief from aches and pains. You’ll appreciate how good it feels to wear these socks, whether your foot pain is the result of “foot problems,” a long day, or how you sit in your wheelchair. You can even sleep in them!
Hot-Cold Shoulder Wrap $79.95 Imagine finding something that could help fight off the chills all of us wheelchair users have in the winter, and then having that item work to cool you off in the summer too. Recommended by physical therapists, these wraps are made of a tough, flexible high-glycerine gel that can retain both heat and cold, transferring it directly to your joints or muscles to provide therapeutic treatment for injuries and chronic pain management. Developed by Edward Stout, an expert in polymer chemistry, the comfortably conforming body wraps are covered with a four-way stretch material, and can be microwaved for heat therapy, or chilled in the freezer for cold applications. The latex-free wraps are leak-proof, even
Know of a new or innovative product that you think other Spinal Columns readers would like to hear about? Send us a description and company contact information to email@example.com and we may publish a profile in an upcoming issue!
i nnovations NEW
PRODUCTS FOR YOU THE PUMP
A new medical supply product for manual or power wheelchairs â€“ the PUMP â€“ is now available to medical supply distributors and spinal cord injury programs. The first-of-its-kind medical equipment is a power wheelchair accessory from BIOTX Ltd. enabling a person with a spinal cord injury to easily empty their urinary leg bag directly into a toilet or urinal with a simple press of a button. This patent-pending medical supply product provides a person with a spinal cord injury with a higher degree of independence, dignity and privacy through increased bathroom independence. More information about the device can be found at www. drydiapersplus.ca/store.php/products/leg-bag-emptier. On this page you can also find a short video demonstration of this device in action.
Pneumatic Vacuum Elevators LLC designs and manufactures the vacuum elevator, which combines a smooth vertical cylinder with a coaxial car that moves up and down through air suction. The product line ranges from a single-passenger model to a three-passenger, wheelchair-accessible model. All of the lift systems are capable of up to a 35-foot (10.5-meter) vertical rise over as many as four stops. The footprint is smaller than that of a traditional residential elevator, and no pit excavation, hoistway, or machine room is required. For more information, go to www.vacuumelevators.com.
Searching for the
perfect wheelchair-accessible minivan by Barry Lindemann
hen my old 2006 wheelchair-accessible minivan was written off in early August this year due to ongoing electrical problems, I had a number of choices to make before getting myself a replacement vehicle that I could use to get my power wheelchair and myself around town. Questions like: do I buy a new or used van? How far should I search for my next van (in Calgary only, Alberta-wide, anywhere in North America)? What type of van should I buy (Chrysler, Dodge, Honda, Toyota)? Which accessibility modifications should I ensure my next van have (power doors, power ramps, kneeling features, hand controls)? What wheelchair-accessible modification company do I go with (Vantage Mobility International, Braun, Rollx, Sidewinder)? The only decision I had made with absolute certainty was that after going through three different accessible vans in 15 years I’d had enough of my vehicles breaking down and I wanted the next van I purchased to be the nicest, most reliable one I could possibly afford. Because purchasing my new van was such a major decision for me, I made myself a promise not to just buy the first wheelchair van that I saw but to be as patient as I could to ensure I got a great one. Like most Albertans looking for a new accessible van, my first stop was to visit Shoppers Home Health Care’s Vehicle Department here in Calgary (they also have some accessible vehicles at their Red Deer and Edmonton locations). Kevin Bennett is the vehicle sales manager at the Calgary Shoppers location and with almost 20 years in the accessible van business he has an unbelievable amount of knowledge he can share with potential buyers. I bought my last van from Kevin and
have to admit I loved my van a lot until all the electronics built into the vehicle that allowed me to drive began to fail and started leaving me stranded all over town. While Kevin took the time to patiently show me the wide range of new accessible vans he had onsite and explain all the great options the vehicles featured, sadly I realized they all were a little bit more than I wanted to spend and going with a used vehicle was probably where I was headed. At that time, Kevin only had a couple used wheelchair vans around he could even sell or show me and since neither of them jumped out to me as ideal for my needs, I decided to take my van search in the next direction. It has been noted that almost 85% of all people looking for their next vehicle hit the internet to do some level of research before purchasing. Well, add me to that statistic, because the internet is where I headed next in my search for the perfect accessible minivan. After being kind of flustered with the hundreds of potential websites offering accessible vehicles for sale that came up when I googled “Wheelchair vans for sale,” I decided to start my adventure online with the website operated by the National Mobility Equipment Dealers Association (NMEDA). NMEDA is dedicated to broadening the opportunities for people with disabilities to drive or be transported in vehicles modified with mobility equipment. After I couldn’t find any suitable used vans in Calgary, I was willing to buy my next van anywhere in North America – that’s where NMEDA’s “Locate a Dealer” web page came in handy. The Dealer Locator page on their website is all about connecting folks with dealers of wheelchair vans, wheelchair ramp lifts, conversion vans, and other handicap vehicle add-ons. I started my search with provinces and states
technology closest to Alberta and was rewarded with links to the many different NMEDA-approved providers of accessible vans in each geographical location. Then after following each dealer link, I would be taken to that company’s individual list of the new and used wheelchair-accessible vans that each place had for sale. After using the website to look at the pictures and specifications of over 500 different wheelchair vans in a one week period, I was feeling very confident I knew exactly what make, type, and modifications I wanted on my next van and what I was probably going to have to pay for it before I made any offers. What was great is that even though I was fully prepared to bring my next wheelchair van in from the United States to take advantage of our relatively high Canadian dollar and the many more vans available to purchase down there, in the end I didn’t have to handle the necessary extra fees and paperwork that went with that option (see sidebar) because the van of my dreams just happened to turn up at a seniors complex in nearby Sundre, Alberta. As for the vehicle I finally settled upon, in the hopes of ensuring many years of problem-free driving, I went old school with my new wheelchair van. You see it does feature the always necessary lowered floor and EZ lock docking station so I can ride comfortably in my wheelchair – but I skipped a lot of the fancy bells and whistles you’ll find available as options on the different accessible vans out there and went with a non-kneeling van with a manual door and manual fold-out ramp to rule out the expensive problems I’ve found occur more often with the electric operating door/ramp systems. After having this van for almost two months, I have to admit it is working out very well and I’ve never been happier with any other vehicle I’ve owned – except maybe for my beloved 1986 Honda CRX, but that’s another story for another time.
Thinking of buying your next wheelchair van in the U.S.? Read This! If you read my article about searching for the perfect wheelchair van, you’ll see that I was really considering buying my next wheelchair-accessible vehicle from a National Mobility Equipment Dealer Association (NMEDA) approved dealer in the United States, even though bringing a vehicle modified for someone with a disability across the Canada-USA border comes with more than a few hoops to jump through. The main reason I think anyone looking to purchase a wheelchair-accessible vehicle might consider looking down south is the huge number of modified vans that are available down there. As you might know, there are more people in just California than in all of Canada, and since the number of people living with physical disabilities is much larger in America, it goes to figure you are going to see a lot more adapted vehicles for sale. Add in that the economy down in the US has been struggling lately and that our Canadian dollar has remained fairly strong, and you have the perfect recipe for finding some great deals on wheelchair-accessible vehicles right now. If you think purchasing a van in America might be right for you, the first step after finding the vehicle you’d like to purchase is to check and ensure your chosen modified van is admissible into Canada. You can check this out at the Registrar of Imported Vehicles website where Canada’s List of Vehicles Admissible from the United States can be found (its short name is the VAFUS list – their website is www.riv.ca/VehicleAdmissibility.aspx). You’ll find that if you stick to one of the big three reputable disabled vehicle modifiers – Rollx, The Braun Corporation, and Vantage Mobility International (VMI) – you’ll have more than enough vans to chose from and, in turn, smooth sailing into Canada in your new wheels. Just make sure you follow the rest of the necessary steps listed on the “Importing a vehicle into Canada” RIV webpage. Rollx Vans – www.rollxvans.com The Braun Corporation – www.braunability.com Vantage Mobility International – www.vantagemobility.com
BAD, BETTER, BEST...
COMPARING POWER WHEELCHAIR PLATFORMS by Allen Boyd
Reprint from Rehab & Community Care, Summer 2011.
t’s always healthy to have choices, but making decisions can require a great deal more education than sometimes meets the eye. These days, when it comes to selecting the “ideal” power chair, the choice to be made extends beyond just a familiar brand. One very important consideration is the platform type. Three platforms are commonly available for the choosing: rear wheel drive (RWD), mid-wheel drive (MWD) and frontwheel drive (FWD). Each platform type comes with advantages and disadvantages, just like any other product in our lives. As a consumer, clinician or interested party involved in power chair selection, you need to become an educated consumer. This involves a handful of simple steps. Step One: Develop a clear understanding of the driver’s lifestyle, goals and ambitions, and know which of these is a priority. Step Two: Understand the pros and cons of the various platform types and match those to driver’s needs, as prioritized. This is the objective part of the selection process. Step Three: After reviewing the bases that are indicated by steps one and two, consider the non-objective aspects of the selection. For example, the process may indicate the best objective match is a FWD, but the driver simply loves the feel of a MWD. If there is no compelling reason not to go with the MWD then why not select it? Making decisions, compromises and selections with a full knowledge of the facts is of fundamental importance.
What do you need to know? Not all manufacturers offer all three platform types. However, between them a number of manufacturers offer a healthy range across several platforms. The following in an overview of a platform performance presentation that will be available in more detail at the Canadian Seating and Mobility Conference and subsequently at various meetings. Because there is relatively scant scientific research on this subject, the presented information is a collection of experiences of individuals knowledgeable in the real world performance of these platforms. We have divided the discussion into six categories: • Indoor performance • Outdoor performance • Stability • Driver and seat placement (on the base) • Smooth Ride • Intuitive feel (immediate likeability)
Indoor Performance MWD is the superior platform indoors. It edges out FWD because of the 360-degree turning circumference, which is significantly smaller than with all other platforms. Typically, the turning circumference of an MWD is around half of that of other platforms. Surprisingly, the results of a study showed that FWD actually navigates more easily than the other platforms around
TABLE 1: INDOOR PERFORMANCE CHARACTERISTIC
Overall turning circumference
TABLE 2: OUTDOOR PERFORMANCE PLATFORM
Distance between pivot (rotating) point and furthest point on base
Length located in front of driver
Length located in front of driver
Larger leading wheel
Caster and wheel size
Sensitivity to “ideal” weight distribution and centre of gravity
* Most brands offer solutions. TABLE 3: STABILITY CHARACTERISTIC
TABLE 4: DRIVER & SEAT PLACEMENT BAD
Unencumbered space, including at 90 degrees
Ability to position powered seating without compromising stability
Maintaining stability during tilt and recline
The ability to maintain ideal weight distribution and centre of gravity, regardless of seating and lower extremity needs.
Maintaining stability up and down ramps, etc.
Absorbs/ reduces bumps, jolts, vibrations
Pivot point at or close to drivers head
Provides stable seat (reduced rocking and bouncing)
Platform with the least sensitivity to ideal distribution of weight and balance and centre of gravity
Weight-distribution friendly architecture
TABLE 5: RIDE SMOOTHNESS CHARACTERISTIC
TABLE 6: INTUITIVE FEEL
tight corners due to the position of the turning pivot point and short front protrusion. However, FWD chairs do have significantly larger 360-degree turning circumference than those operating on an MWD platform. You may more easily negotiate a tight turn with an FWD chair, but if you need to rotate in that space, make certain there is enough space. If not, MWD will be the answer (Table 1).
Outdoor Performance When operating on sidewalks, parking lots and rougher surfaces, larger wheels and casters and a wider tire/caster profile (footprint) provide flotation against sinking and ploughing. Weight distribution that unloads casters and places more of the weight over the larger drive wheels is also positive. Ground clearance of three or four inches – enough to clear typical obstacles – is industry standard. It is also important to prevent
Maneuverability in confined areas
stalling, so adequate power/torque is a must (Table 2). Simply put, FWD offers superior performance during outdoor use for these reasons: 1. The larger front drive wheels are significantly more capable of transitioning over obstacles of all types (monster trucks prove it). 2. The typical weight distribution on the FWD platform tends to be over the drive wheels, which supports good traction. 3. It is easier to “pull” then to “push” casters over obstacles or soft surfaces (pushing is an RWD characteristic). Casters loaded down due to poor weight distribution are a significant impediment to traversing rough, soft surfaces. Again, this is a typical RWD characteristic. 4. FWD platforms do NOT “high centre.” High centering may be present as an MWD weakness outdoors.
Stability Well-educated consumers and prescribing therapists are aware of the importance of maintaining the ideal centre of gravity location and weight distribution during tilt and recline. Generally speaking, the ideal RWD distribution is 60-70 percent over the drive wheels and 30-40 percent over the casters. With FWD platforms, the ideal distribution is the polar opposite. MWD platforms require as much weight as possible over the (center) drive wheel (i.e., 50-70 percent over the drive wheel) and an even distribution of the balance over the front and rear casters. When looking for optimum stability, look for weight distribution- friendly architecture (Table 3). This is directly impacted by the seating and driver placement on the base. In my experience, MWD and FWD are generally preferred over RWD when stability is considered, as their architecture provides more options for the position of the driver and the heating system’s location.
Driver and Seat Placement Look for the unencumbered 90-degree lower extremity/foot space that does not place the driver at the front of the base to find the necessary room. Avoid having to significantly position powered seats towards the front to prevent tipping as a result of weight distribution while reclined or tilted (Table 4). Both FWD and MWD again score well in this area, with FWD providing the clearest space for the key requirement of positioning lower extremities. FWD platforms have no casters and provide the most open space for lower extremity positioning, even at 90 degrees. This makes a significant difference to the overall placement of the driver powered seating. This, in turn, allows for the positioning of both the driver and seating while still maintaining good stability. The MWD platform does have casters, but its architecture is less restrictive than that of the RWD platform. This allows for good placement of both the driver and powered seating, and maintenance of stability.
Smooth Ride A smooth ride is defined as one that reduces jolts, bumps and vibrations by absorbing the energy generated as the vehicle tra-
verses various surfaces. During a stable ride, the user can cross diverse surfaces with reduced rocking and bouncing (Table 5). FWD and RWD platforms are amenable to independent suspension on all wheels (although this may be an option rather than standard). MWD platforms do incorporate suspension, but the architecture requires more casters (four versus two). This results in more bumps being absorbed as the vehicle traverses obstacles. In addition, MWD platforms – unlike FWD and RWD – cannot provide independent suspension on all wheels and casters.
Intuitive Feel The phrase “intuitive feel” is used to describe the emotional response that drivers have to the “feel” of the vehicle. A chair that is intuitive to drive and control tends to be preferred. This “feel” is more significant for individuals who have experienced independent mobility through ambulation or driving an automobile, or who have previously driven an RWD/MWD power chair. Two factors appear to cause this. Firstly, having the turning pivot point close to the driver’s head delivers a more natural/ intuitive feel and typically does so after a short learning curve. Secondly, the ability of the vehicle to access tight spaces is another contributing factor. Although FWD may require a longer learning curve, it ultimately scores high due to its superior maneuverability (relative to RWD) in confined spaces. MWD followed by FWD score the best in this area. Although RWD turns close to the natural pivot point (around the head), it is by far the poorest performer in confined spaces (Table 6).
Doing your Homework Making decisions with your eyes wide open is the best way to end up with the right choice. This is not a short-term decision, as the average life expectancy of a power chair is five to seven years. That is a long time to enjoy the benefits of a good decision or, conversely, to suffer the frustration and limitations of a bad decision. There is a lot at stake, so you should be sure to do your homework.
Now, I can decide… … to go to work with confidence
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Reference: 1: Christensen P, et al. Gastroenterology 2006; 131:738-747
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Accessible Transportation ...Then and Now by Linda Welch
Over the last few decades, personal transportation options for those with disabilities has improved vastly. Photo courtesy of The Braun Corporation.
ccessible transportation has come a long way since snowy Indiana winters forced a young Ralph Braun to find a more hospitable mode of transportation instead of his homemade scooter. Braun took to his cousin’s shop and created the very first Braun wheelchair lift on a retired post office jeep. When a full-sized van from major car companies became available in around 1969, he upgraded, creating the Lift-AWay wheelchair lift. Word spread quickly, creating a large demand that compelled Braun to quit his day job as a clerk at the local hospital to work on meeting the needs of the disability community. Larry Pempeit, Director of Community Development at the Canadian Paraplegic Association (Alberta), was one of the first people in Alberta to own an accessible wheelchair van. Injured in 1966, at the age of 20, Pempeit was no slouch in the field of ingenuity. He fondly recalls his first set of wheels — a 1969 Pontiac two-door. He got his first van in the early ‘80s; a shiny new Dodge, straight off the lot. This “Boogie Van” was about as basic as they come; power steering and power brakes, but no power windows or cruise control. “It had those two small back windows and a bed in the back,” he laughed. “The typical Shaggin’ Wagon.” He travelled to Calgary for a cable lift, purchased from HandiWheels, but “it was a real bother, because the cables kept breaking.” Pempeit built his own power seat that moved back to the level of his wheelchair, where he could transfer into the driver’s
seat, then slide back into position, ready to drive. “In those days the industry was still very young. Every driver had to make things work for themselves,” he said. Al Fakely reiterates that handyman reality. “We pretty much got Western Canada on the road,” he said. Even as a child, Fakely had a knack for figuring out mobility issues. He had a young cousin, Teddy, born with a degenerative disease. “He wasn’t expected to live that long,” Fakely said. He felt they ought to find a way to allow his cousin to come and play with the rest of them. “We rigged up this old army cot, and we’d lay him on it and drag that thing all over the place.” When Fakely quit driving trucks in order to stay closer to home and family, that soft spot for young Teddy helped him decide just what business he wanted to be in. In 1978, Fakely started Golden Boy, an adaptive technology and mobility specialty store in Edmonton. “I never did it all on my own,” he said. Fakely travelled to the United States often back then and trained in many different styles of technology. But there was no book of standards for him to follow. He had people with all different types of disabilities coming into his shop. “One young fellow had lost his arm in a car accident,” he said. “We had to figure out how we could get him driving again.” Fakely stayed up for nights with a pen and paper, and designed a board on which he put a row of buttons. Each button did something different. He drove using a joystick and a button on the roof that he hit with his head for signal lights. They had to fly to the States for training on the joystick that used vari-
history ous speed settings for turning, depending on how fast he was driving. It was a long process of trial and error, and in the end, it turned out to be a very high-tech piece of equipment. Over the years, many companies have contributed to the development of accessible vans. Lowered floor technology, often credited to Vantage Mobility International (VMI), worked well with various ramping systems. VMI has roots stretching back to the late 1970s when the founders collaborated to meet the needs of a close family friend. In 1984, they applied their lowered floor technology to a Chrysler minivan. That success led to the 1987 incorporation of Vantage Minivans, which later became VMI. Today the corporation has a complete range of accessibility products, including full-size vans and six different platform lifts. In 1984, Bruno Independent Living Aids entered the mobility market. Today they offer over twenty different products, including lift and stow scooters, power chairs, manual folding chairs, all designed to interact with hundreds of vehicle types. They combined these lifts with their revolutionary turning automotive seating, extending their target markets beyond individuals with disabilities, giving more freedom to the aging baby boomers who make up a huge portion of today’s demographics. New companies are rising up all the time — most recently in July, 2010, the Vehicle Production Group, an American car company, announced the first factory-built wheelchair-accessible car — the MV-1. According to the news release, “the vehicle features a deployable access ramp with a 1,200-pound weight capacity, a 36-inch entryway, and an interior that accommodates up to six occupants with the optional jump seat, including either one or two wheelchair passengers and the driver.” Rather than setting up the traditional brick-and-mortar dealership, the MV-1 will be marketed through MEDIchair dealer stores, where mobility professionals are already in place. Coinciding with their launch in Canada, they are challenging others to “rethink movement.” For more information on the MV-1, check out www.vantagemobility.com or www.vpgautos.com. The history of hand controls is almost as varied as that of the wheelchair lift. Accessible vans have become far more versatile because of the varieties of hand controls and specialized modifications. Sure Grip Controls, the leading manufacturer of hand controls for people with disabilities, offers several varieties, as well as steering wheel attachments, secondary controls, and accessories. Like all areas of technology, the digital revolution is changing the way we do things. Options now include Bluetooth voice recognition, joysticks with push-button controls, and push-start ignitions. According to Kevin Bennett, a representative from Shoppers Home Healthare in Calgary, Barry Lindemann drives one of the most high-tech vans on the road today. In fact, the driver’s side of Barry’s minivan looks more like a fighter plane’s cockpit than a regular family minivan. Barry has everything from a push-button start, electronic gas/brake to remote steering installed in his vehicle. “To say it is a marvel to see how it operates on the open road is
Larry had a lift custom-built for his van for easy lifting and control. definitely an understatement,” says Barry. For someone who wants to return to driving following a disability, the procedure starts with an assessment. Driver Rehab Specialist Darko Slankamenac clarified the procedure. Clients require a referral from their family doctor along with an up-to-date medical assessment for Alberta Transportation. The Initial Driving Assessment cost is $250 and takes three hours. Driving training is recommended, and available through the Glenrose for $50 per hour. Then it’s up to the client to take (and pass) a driving test conducted by Alberta Transportation. Successful clients will then receive their license, which will be personalized with the specific codes identifying the adaptive devices they, as an individual, need in order to drive. The Glenrose is the only driving assessment program covering Alberta and most of Saskatchewan. There is at least a six-month-long waiting list to get in as an individual to be assessed. Anything is possible these days. At the March 2011 Technology, Entertainment, and Design conference, Dennis Hong of Virginia Tech spoke of a vehicle that would give freedom and independence to the blind, in answer to the National Film Board’s “Blind Drive Challenge.” (www.ted.com/talks/ dennis_hong_making_a_car_for_blind_drivers.html) The desired goal was not to create a car that could drive itself automatically, with a blind person behind the wheel, but one where a blind person can make his or her own active decisions to safely drive. Using a system based on perception, computation, and non-visual interfaces, they unveiled the resulting prototype to the public in late January, at the world-famous Daytona International Speedway, during the Rolex 24 racing event. A volunteer successfully manoeuvred the track, avoiding many obstacles, like boxes thrown from a truck, plastic barrel blockades, and other vehicles. It was a very emotional experience for all. Although still in the prototype phase, many of the applications can be used elsewhere in accessible adaptive technology. In light of the current computer revolution and how technology is advancing every year, the future of accessible vehicles and how people with special needs drive them will definitely be something very amazing. Spinal Columns
THE LAST 60 YEARS
AND THE GROWTH OF TRANSPORTATION FOR PERSONS WITH DISABILITIES by Ken Thomas
The evolution of Edmonton’s DATS program. Photos courtesy of the City of Edmonton.
hen I was born in the early 1950’s, there was no accessible transportation for persons with disabilities and no wheelchair accessible vehicles at all in Alberta. My parents, along with a few other parents who had kids with cerebral palsy, got together and fought to get a clinic and school opened in Calgary. They had only one bus (which was non-wheelchair accessible) for the whole city. The kids who lived on the south side went to the clinic in the morning and the kids on the north side went in the afternoon. In 1964 my dad got transferred to Edmonton and I started going to school for full days at the clinic here. They had 5 school buses which heavy steel pull out manual ramps on the side at the back end. The Glenrose school hospital opened in 1966 and the Edmonton HandiBuses Association provided the school bus transportation for the out-patient children. As the school grew in size and as the number of children increased, HandiBus started providing transportation for kids and adults to city recreation activities like day camps in the summertime. In the sixties and seventies Edmonton had one large wheelchair accessible bus that held about 20-25 wheelchairs. The whole backside of the bus folded out hydraulically into a ramp. This bus took groups of kids and adults to camps, football and hockey games and so on. I even traveled on this bus from Calgary to Camp He Ho Ha, west of Edmonton, for a few years in the early 60’s before we moved to Edmonton. In about 1969 one man bought a van and put a manual ramp on it and started his own cab company called Diamond Cabs. At the time, this was the only accessible vehicle in Edmonton available to the general public. In the spring of 1973, a 3-day conference was held at the Providence Centre in Edmonton that laid the groundwork for a municipal Disabled Adult Transportation Service, or DATS, and other projects for people with disabilities like the first high-rise apartment building with wheelchair-accessible suites, Bader Towers. In July of 1973, the Alberta Committee of Action Groups for the Disabled (a newly incorporated society) organized a protest rally outside Edmonton City Hall. One of the founding members, Percy Wickman (later to become a City Councilor and an MLA) made a presentation to Edmonton City Council
demanding that the city start a publicly-funded adult transportation service. In November 1974, City Council approved the creation of the Edmonton Disabled Adult Transportation System (DATS). A two-year pilot project was started in June 1975 with two contractors – Edmonton HandiBuses Association and Edmonton Handy Limousine service. After the pilot project ended in March of 1977, City Council voted to continue DATS, but moved the management to the Edmonton Transit System (ETS). The birth of DATS was timely for me – I had just graduated from grade 12 and I needed transportation to get around town to college and recreational activities, as did many other adults with disabilities. My friend told me that in the summer of 1975 she was working at a summer job with Percy Wickman and other advocates out of an old church on the north side. At that time, there was a lot of advocacy to ensure that the LRT stations and Edmonton bus systems were made accessible. This advocacy encountered significant resistance, and so Percy started CART, the Committee for Access to Rapid Transit, which led to LRT stations and trains being made accessible from the get go. Since 1975 the number of wheelchair accessible DATS buses has grown in size from only a few buses to today’s massive fleet of buses and vans. Around 1993, the City of Edmonton purchased its first shipment of low floor wheelchair accessible city transit buses. The first week the new buses were running on my neighborhood route # 1, I wheeled to the bus stop and got on the bus myself. I got locked in and went for my first ride to Capilano Mall and back home. What a sense of freedom I felt being able to go somewhere without anyone else’s assistance! Up to then, I had relied on being driven in a car or a DATS bus. Although on a few occasions, my mom and I had taken the old ETS non-accessible bus downtown. Mom would help me climb up the stairs, sit me in a seat, and get the bus driver to help her fold up my wheelchair and lift it on the bus (the drivers were very helpful in those days!) Today, all ETS buses in Edmonton are low-floor and wheelchair accessible. The LRT is also totally wheelchair accessible, after a lowering platform accessible ramp was installed on LRT door entrances in 1994. There are a lot more wheelchair accessible cabs in Edmonton, and even the trolley car is wheelchair accessible!
Key dates in spinal cord injury history
ntil the Second World War, a serious spinal cord injury usually meant certain death or, at best, a lifetime in a wheelchair and an ongoing struggle to survive secondary complications, such as breathing problems or blood clots. But today, improved emergency care for people with SCI and aggressive treatment and rehabilitation can minimize damage to the nervous system and even restore limited abilities. Advances in research are giving doctors and patients hope that all spinal cord injuries will eventually be repairable. With new surgical techniques and exciting developments in spinal nerve regeneration, the future for spinal cord injury survivors looks brighter every day. As the CPA (Alberta) celebrates its 50th anniversary as an organization, we look back at some of the key dates in spinal cord injury history.
1945 The CPA is founded by a group of paralyzed Second World War veterans who were determined not to spend the remainder of their lives in hospitals or long-term care facilities. Their ef-
forts result in improved medical and rehabilitation services, better pensions, and, perhaps most importantly, increased awareness of their abilities and potential throughout society.
1946 No spinal cord injury timeline would be complete without referencing the Paralyzed Veterans of America. This congressionally chartered veterans’ service organization was one of the first to develop unique expertise when it came to helping disabled servicemen with the wide variety of issues that affected everyone dealing with spinal cord injury at the time.
1960s By this time, CPA has a nation-wide presence with divisions in most provinces. CPA provides a wide variety of services to a membership of more than 20,000 Canadians who have a spinal cord injury or other form of mobility impairment.
1985 Inspired by his friend Terry Fox, Rick Hansen of Vancouver, BC begins his Man in Motion Tour and literally rolls around the world in his manual wheelchair to raise over $27 million for spinal cord research.
1995 Hollywood actor Christopher Reeve suffers a devastating spinal cord injury as a result of a fall from his horse. He goes on to establish the Christopher and Dana Reeve Foundation with his wife and they almost single-handedly double the amount of money contributed towards spinal cord research each year.
2004 Christopher Reeve dies at 52. The star of the “Superman” movies, whose accident turned him into a worldwide advocate for spinal cord research, dies of heart failure and secondary complications from his spinal cord injury — three weeks before he was to be a guest speaker at a CPA (Alberta) fundraising dinner in Calgary.
2009 In the U.S., the Federal Drug Administration approves the first clinical trial of human embryonic stem cells. They can turn into any type of human tissue, and are expected to be used in the treatment of various diseases, including spinal cord injuries.
Is it better today than 50 years ago? by Ron Wickman
bsolutely! This year I turn 47, so I have been alive most of the Canadian Paraplegic Association (Alberta)’s 50 years, and I have experienced the change. What was the built environment like when I was young? I remember when there were no curb cuts (they call them curb ramps now) in the city at all. I remember when the first ones were constructed downtown. My dad used to get his front wheels on a curb and grab a parking meter to pull himself up onto the sidewalk. I remember strategically planning each and every new or unknown journey, whether it was to be for an hour or for a month. This most often involved several phone calls to see if a restaurant, bowling alley, or a hotel or motel afforded an individual in a wheelchair freedom to enter without the need for assistance. I remember going to a hotel or motel reception desk to ask if they had any wheelchair-accessible units. If the answer was yes, I would often follow someone through winding hallways, through kitchen and dishwashing areas, out the back door, and through the garbage area: this was the accessible path into the building! Once we were inside the unit, we would often have to remove the bathroom door to allow my father access to the tub, sink, and toilet. I remember numerous garbage areas, back doors, kitchen and dishwashing areas of the many restaurants we visited; the main entrances had steps leading to them. I remember using the freight elevator instead of the public elevator; again steps lead to the public elevator. I remember pulling my father up more stairs and curbs than I would like to count. I have been around people with disabilities my entire life. Today, I understand that older accessibility codes and guidelines were generally focused on users of wheelchairs who were paraplegic. Currently, codes and guidelines address crossdisabilities: they are definitely centered on being more inclusive to everyone. Change has been slow, but I am a witness to it. There is a much greater understanding regarding accessibility issues by the general public, all levels of government, and the private sector. In all my years in the public school system, I never met a classmate or teacher with a disability. As I have seen my three children go through the same school system, I have met many of their friends who have disabilities. Public attitude has changed. When I was young and in a restaurant with my dad, the server would always look at me and ask what he would like to eat. I cannot imagine this happening today. I have worked for all levels of government and I have experienced the change in attitude. Ten years ago, I was instructed to meet minimum standards and no more than that. Today, I am being asked to exceed the minimum code standards and work towards better practices. The private sector has shown a greater deal of interest — however, there has not been much action yet.
Ron Wickman and his father, Percy Wickman. So what is the biggest obstacle to accessibility in the built environment today? It is single family housing. Approximately 75 per cent of the city makeup is housing and very little barrier-free design enforceable codes exist. We need more housing that is visitable and adaptable. My family home has an interesting history. It was built in 1967 to be wheelchair-accessible for my father. The hallways were made slightly wider than the standard, the doors were only 30 inches wide, the bedrooms were small, the kitchen was not at all accessible, the bathroom was not big enough for my father to turn around in, and a steep 1:6 slope ramp led straight from the door to the ground. To get in the house, my father would need to lock his brakes, unlock the door, unlock his brakes, and go in; leaving the house was more difficult. I saw a great deal of accessibility modifications to the house in the 20 years that I lived there. The kitchen modifications included a pantry with shelves located at a height that my father could reach. He would keep dishes and glasses in the pantry. Before that, my father would use his armrest to flick a glass from an upper cabinet and try to catch it as it fell — we went through many glasses. Eventually the house became a two-bedroom with the tearing down of a wall to combine two smaller bedrooms into one. The biggest changes happened as my father approached 60 years old. After almost 40 years of being in a wheelchair, my father’s shoulders began to give out on him. The first step was to go from a car to a van. He would no longer have to transfer to a car — he could now drive his van from a wheelchair. The garage was enlarged to house a new van plus my mom’s car. Next, a new ramp was constructed that was more gentle and that had a five-foot-by-five-foot level landing at the top. Finally, the bathroom was enlarged to house a wheel-in shower area. Today an adaptable home would be designed to anticipate all these changes, reducing the need for major modifications. In 10 years from now, we will see many adaptable home designs. I just wish we could see them sooner rather than later.
The Supreme Court of Canada. Photo courtesy of Lone Primate.
ne, two, three. Three judges. Three Supreme Court judges. Not bad, for an injury litigation case. Normally, the Supreme Court sits three of its nine judges for provincial appeals cases like the two he’d brought before them. Ron Cummings remembered the words a colleague told him. “They’ve got all the law in the country to deal with. Criminal law, matrimonial law, constitutional law, Indian affairs, commercial law… they’ve got it all. So they’ve got to split the judges up; three, three, and three. If they come in with three, just so-so. If they come in with five, they’re looking at your case as being really, really serious.” Three judges and Cummings let out a sigh of relief. Even getting this far was good enough. As Cumming notes, only one out of 20,000 cases makes it to the Supreme Court. But the door at the front of the courtroom where the judges emerged was still open. Four. Five. They had brought in five of Canada’s highest authorities. This was the last court of appeals – any decision here was final. Cummings was stunned. But no one expected what happened next. Six, seven, eight, and nine. They had brought the entire bench of the Supreme Court of Canada to hear his cases. Eventually, the two suits Cummings had brought to the Supreme Court would be heralded as two thirds of a famed trilogy of personal injury and damages cases, though of course he didn’t know it at the time. The first case to present that day was on Gary Thornton, a
15-year-old boy who landed straight on his pommel horse after trying to somersault off a springboard in a British Columbia gymnasium. “He went about eighteen feet up, and he landed on his forehead,” explains Cummings. Thornton was only a beginner gymnast, but from that day forth was quadriplegic. Jim Andrews was the subject of the other case; a young man who was hit by a truck while on his motorcycle. The accident left him with a broken neck and a spinal cord injury. Back in the courtroom, there was no joking around, no friendly chatter or banter. Cummings was simply asked to present his case. “I’d never been to the Supreme Court before,” he says. “But they just asked questions, question after question. I couldn’t answer fast enough.” He returned to his table, while the judges called up his opposition. Cummings thought he’d had a rough time in front of the nation’s highest judicial authority, but his opponent was in for a far bigger challenge. “They started stomping on him. They lit bombs under him and blew him up every time he opened his mouth,” Cummings remembers. After a long and gruelling ten years of arguments, decisions and appeals, and with the help of gymnastic experts, medical professionals, and care specialists, Cummings had won two of the largest settlements of his era. While Cummings was known for his achievements, not everyone looked look so kindly upon them. Before reaching the Supreme Court, both the Thornton case and the Andrews case
Ron Cummings as a fresh-faced Faculty of Law graduate in 1960. had brought him some interesting encounters. One judge refused to shake his hand in a pre-court meeting, telling Cummings that his desire for large rewards had preceded him. “We’re in British Columbia. We don’t glorify lawyers here. We simply apply the law,” Cummings was told. “Every objection went against me,” Cummings says. “Didn’t matter what it was on. The judge just said, ‘overruled,’ every time.” That same judge later nominated Cummings for the Order of Canada. In his prime, Cummings was one of the top litigators in Canada. He won rewards as large as $5 million for his clients, vastly changing their lives for the better after they’d suffered enormous trauma. He also negotiated some of the first structured settlements, which are now commonplace in litigation. But Cummings wasn’t born into his success. He grew up in east Edmonton in a small 2-bedroom in the Boyle Street area, sharing a bed with his grandfather. It was a rough part of town. They weren’t rich, but as a youth he managed the odd job here and there, selling programs at games, working at the brewery and for shingle companies. Eventually, he put himself through law school with no small amount of hard work and determination. Cummings, Andrews Mackay as a firm has a history of its own. It started out in 1915 with lawyers John Lymburn and Mayne Reid, and became a constantly changing amalgamation of Lymburn, Reid, Douglas Cobbledick and Paul Klingle. And when Cummings joined the firm at the bottom in 1962,
it was quite the achievement. “You’re the first guy they’ve hired in five years. I don’t know how you did it,” he was told. He started out with a tiny corner office and began to climb his way up the ladder. In 1965, he conducted his first trial representing a young individual with quadriplegia named Larry Pempeit and gained widespread attention. Cummings was able to show a clear and justifiable need for his client to attain the largest award in Canada at that time. Before this landmark case, most settlements were not sufficient to reflect the additional costs associated with living with the consequences of a traumatic injury, such as quadriplegia. This case gave him a confidence boost and an even greater drive to seek fair and equitable settlements for people with traumatic injuries. The firm was moving in a new direction. “It was a solicitor’s firm that I turned into a litigation firm,” Cummings says. Before he knew it, he was working for Cobbledick, Klingle... and Cummings. He set a goal of achieving increasing awards for his clients every year to ensure inflation didn’t engulf them. As his expertise in handling personal injury suits grew, clients began to seek him out from across Canada. He even handled cases for clients from the United Kingdom and the United States that had been injured in Canada. In 2009, Cummings retired from the firm he’d done so much to build. He remains involved as a consultant but has decided to spend more time relaxing on his Edmonton area acreage, taking short vacations and spending his free time golfing. Cummings and his firm have been key supporters of the CPA (Alberta) and its activities for many years, including a number of its fundraising ventures as well as this Spinal Columns magazine. On this, our 50th anniversary, the CPA (Alberta) salutes a long-time friend and supporter – the landmark litigator and king of torts, Ron Cummings.
Ron Cummings riding on his farm, to which he’s now retired.
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Health Care Evolving by Aaron Yeo
inner parties, Christmas concerts, and chocolate zucchini cake are among Jean Ursulak’s fondest memories when she thinks of her twenty years as a registered nurse with the Edmonton spinal cord unit. After 10 years of raising kids, Ursulak went to work at the University of Alberta Hospital in the rehabilitation unit. She had not worked in rehabilitation before, but trained in her hometown of Vegreville to work in maternity. Yet her time at the hospital was the start of an era, though it did not look like much at first. “It was a general rehab,” she said. “They had spinal cord, amputees, multiple sclerosis, strokes — just general rehab.” Station 66 of that old University Hospital was the centre of rehabilitation services for central and northern Alberta. Also on the same floor was the
polio wing, Station 67. She formed close relationships with both her colleagues and her patients, and in 1973, a notice came, telling them they were moving the unit over to the Aberhart Centre. “We went kicking and screaming because the Aberhart was a TB hospital, and was not designed to handle wheelchair patients. The Aberhart seemed so far away from doctors and from medical facilities.” But in reality, the Aberhart was only a ha lf-block away. There was also a tunnel between the two hospitals which provided many adventures (sometimes questionable) for the rehab patients. However, she remembers the relief of having all of the spinal cord injury experts situated together, a problem that had previously plagued them. “Our whole team moved over together. We were all able to work on the same floor.”
Previously, all of the physiotherapists, occupational therapists, and other parts of the team were spread out over several different floors, which led to inefficient treatment and lots of wasted time. But it was not until 1979 that Dr. Ja mes Nicas officia lly sta r ted the spinal cord unit, to focus on the paraplegic and quadriplegic patients in the ward. Ursulak fondly remembers his dedication. “He’d come in every day, including Christmas, and when we needed to have x-rays or special things he’d be there.” That is when the spinal cord unit began to flourish. The patients and staff grew closer than ever before, and it became more than just a rehabilitation ward — some might have even called it home. “The patients had a lot of independence,” Ursulak explained. “They could go up to the roof of the Aberhart, or
feature down into the tunnels. If a patient was missing for a long time, some of the staff would go down and find them all smoking or doing other things.” The staff still planned the majority of the ongoings with the unit, of course. But now that everyone was situated on the same floor, the relationships were much stronger, and more and more social events took place over the years. Ursulak remembers taking the patients out to Hawrelak Park to skate on the frozen pond, or having big Christmas concer ts involving ever yone in the ward. Rick Hansen even paid a visit once, much to the delight of everyone. In fact, the bonds between patients and careta kers was so strong that when the Aberhart staff went on strike, the staff of the spinal cord unit walked right into the hospital and got back to work like any other day. They could not, and would not, leave their patients, because they were not just patients; they were friends. The unit saw a new future when it was transferred to the new Glenrose Rehabilitation Hospital in 1990, and four years later, Ursulak retired. How-
ever, Ursulak still keeps close ties with her old friends. One of her patients, Louise Miller, started the Spinal Cord Injury Treatment Centre (Northern Alberta) Society (SCITCS) while still in the hospital. Today it is a bustling organization that Ursulak volunteers her time for as secretary. As well as volunteering for SCITCS, she volunteers for CPA (Alberta). Looking back over the past few decades, Ursulak could be an expert on the Alberta health care system, especially when it comes to spinal cord injury. “There was definitely a steady improvement,” she said, noting that the patients received better medications as
time went on. Advances in rehabilitation technology proved incredibly useful to the unit as well. The CPA (Alberta) was involved in the early stages, as well, providing support to the world-ready patients. “CPA was in our unit way before we even moved over to the Aberhart. They would look at what was available for patients when they left [the hospital],” Ursulak said. As we reflect on the past 50 years there are certain people who made life easier for those of us that live with a spinal cord injury; Jean Ursulak was one of them. Thank you Jean.
From left to right: Unidentified, Jean Ursulak, and Dr. James Nicas.
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Crip Club Jumpers
The journey of trying something new, SCI style... by Kuen Tang
s I drive towards Spirit River, Alberta, on a beautiful Friday morning, my heart is calm like the weather before a major storm, but my mind is racing 100 miles per hour, full of excitement. I am a C-6/7 quadriplegic and I have always been afraid of heights, but I have “jumped” at the challenge that our peer event coordinator Brian has given to me. All my friends think I am crazy, but, yes, I have agreed to go skydiving! As I get closer and closer to Spirit River, my heart starts to race as fast as my mind. My excitement turns into determination, my fear into eagerness. Having my sister and my nieces on the journey with me helps. As I pull into the airport, I see a parked plane...and then it hits me. I am about to face my biggest fear. I’m about to do something that I would not even do when I was able-bodied. ...I’m about to jump out of a plane at 10,000 feet! But there is no time to waste, and no chance to back out; this is a once-in-a-lifetime experience. I put on my best smile and bravely join the rest of my group: five guys with spinal cord injuries, and all just as crazy as me. Thus, the “Crip Club Jumpers” are born. I never imagined I would be the first to jump, but when the opportunity presented itself, I took it. “Life is for us to enjoy, to challenge, and to overcome,” I think to myself. “Let this girl show the boys how it’s done.” As I am getting strapped into the harness, everyone watches me as I watch them, and my mind and heart are` as calm as the forest in winter. “This is it,” I think. “As long as I don’t go splat, this just might be the best experience of my life.” As I put on a dorky helmet and goggles, I giggle and a thought comes to me: “Someone really needs to design better looking gear for the participants to wear.” As two guys pick me up by my harness and place me in the tiny aircraft, my determination and eagerness falter a little. As the aircraft door closes and we are increasing in altitude, my mind was cursing at me in every language I knew. Then I saw a
perfectly round rainbow and the sunset. When the aircraft door opened and a gush of wind knocked me back, my heart cringed and my mind screamed out, “Oh my god, what have you gotten us into?” And then I am out of the plane and free falling...I do not scream...I do not close my eyes...I do not breathe for a few moments... wow. The sky is within my reach, the sunset kisses my cheeks, and the wind massages my body. For a few seconds, my arms are wide open and I reach out for the horizon, my eyes closed to feel the sky, feel the earth, and feel the power that assisted me to get to that moment...I am pretty sure I have found peace and serenity. As I land back onto earth again...I feel something missing; I think I left my heart in the sky. I hope you enjoyed going on this skydiving journey with me. It is truly a once-in-a-lifetime opportunity, and you need to experience it for yourself, in order to truly feel the moment of serenity I felt. This journey has taught me a lesson as well: “Do not judge or fear the unknown until you experience it for yourself; we have more strength in all of us than we give ourselves credit for.” So, now, I dare you to try something new, because the sky is the limit.
Kuen Tang, right, and her sisters.
sports WHAT COMES
AFTER by Wes Kibble
t’s not often that Kamloops is visited by an athlete as successful as Ross Norton. He has an unassuming manner and seems content to simply be a small part of Team Alberta. When I approached him for an interview, I told him that I was a rookie and not a real reporter. He said, quietly, that was okay, he’d been interviewed before. A wonderful understatement.. Ross has played on the Canadian men’s national wheel chair basketball team for over 10 years. He is a talented and committed athlete who has devoted the time and energy necessary to take him to the Olympics three times: each time onto the podium. Ross now inspires others as a motivational speaker, advising them to “dream big”. What does an athlete do after a career that includes two Olympic gold medals and one silver medal, among a host of other achievements? For many, a well-deserved rest from competition or a move to coaching would be obvious choices. Not for Ross Norton. Now, at 38, and with injuries temporarily taking him off the basketball court, instead of taking a break from competition, Ross has rolled over to another court: the tennis court. Ross represented Team Alberta in men’s wheelchair tennis doubles, a sport that he took up at the suggestion of his doubles partner, Souheil Saab, only a few months ago. Both Souheil and Western Canada Summer Games tennis tournament referee, Louise Murphy, consider that he has enormous potential and could be a formidable player in the future. Ross is quiet spoken and confident, used to the world stage,
but enjoying his opportunity to compete in a new sport and his time as an adult among teenage athletes. He and the other wheelchair athletes are not subject to the age restrictions of other competitors. Their experience and maturity must make them valuable members of the provincial teams. The facilities the Kamloops Tennis Center have incredible wheelchair access, such as full wheelchair accessible washrooms and showers. One aspect of the Western Canada Summer Games that Ross especially appreciates is that wheel chair tennis players are simply part of the teams. They are not separated into a different category, but compete beside their teammates, and their performances contribute, in equal measure, to the success of the teams. Ross would love to help his team in their quest for a gold at these Games. On the court, Ross played with quiet confidence. He is still learning the subtleties of a game that relies on finesse, strategy and precision, rather than power, but his potential was on display in his first match at the Games. At present, Ross is content to enjoy the game without putting too much pressure on himself. He considers it a sport that could be played for a lifetime. But, remember his motto, “dream big”, and don’t be surprised to see him competing on the tennis court at a very high level in the future. Reprinted courtesy of the 2011 Western Canada Summer Games newsletter.
Ross Norton playing tennis at the 2011 Western Canada Summer Games. Photo courtesy of the 2011 Western Canada Summer Games newsletter. Spinal Columns
It seems like almost overnight a renovated, modern complex was completed where the old barn-like building on Macleod Trail once stood. This is the new wheelchair accessible home of Motion Specialties, a home health care company that is now operated by a long-time friend of many Albertans with and without disabilities – Helder Mendes and his staff. Helder has been in the home health care business in one form or another since 1997. Looking for different opportunities after more than 20 years in the oil and gas business, Helder considered numerous business opportunities when he and his family came back to Calgary. With support and advice from his wife Lynn (a registered nurse), they soon gravitated towards the home health care field because they wanted to work in an industry that had a positive impact in their community. In the fourteen plus years since Helder and his family have worked in the home health care business, they say they are amazed by the changes in the industry but particularly regarding the wide number of advanced products that are now available to people with special needs. They also recognize how much more informed their clientele are – oftentimes customers/clients know just what they need/want through internet research and feedback from others. Helder says, “Motion Specialties is in the “education” business, because as a team we work towards educating health care staff and consumers about products that may lead to healthier and, hopefully, happier lives”. Helder made a significant investment in the environment of this new location and has created a space that is functional but inviting for both staff and customers, complete with big screen TVs and free wifi. The goals of Motion Specialties are relatively simple: they want consumers with disabilities and special needs to have confidence that if they do business with Motion Specialties that they will be treated with dignity and respect and that they will receive a high level of service. Helder says the team will strive to offer best-in-the-industry service and he also says that while they might not get everything 100% right the first time, they will do their best address any issues. Motion Specialties and Canwest Elevators (also owned by Helder) share the new Macleod Trail location and are big supporters of many charitable organizations in Alberta. Helder says, “My family and my staff understand the importance of supporting charities because we realize charitable organizations are an integral part of the communities that we are doing our best to serve. I often get as much out of helping different charities as they do, and I feel we have a responsibility to help our neighbours if we are in a position to do so.” www.motionspecialtiescalgary.com
HOME HEALTH CARE
There is probably no single thing that affects the lives of persons with spinal cord injuries more than the quality of their personal care and the agencies or staff that they have come in and out of their homes every day. That is why I think there is always room for one more home care agency that is looking to improve the lives of people with disabilities in their community. Uplift Home Care is one such new home care agency that was recently started in Calgary to serve people with spinal cord injuries and other physical disabilities. The owner/operators of the company have a family member that lives with a spinal cord injury and they feel this helps them truly have an understanding of what people with physical disabilities want and need in a home care company. They really want their care staff to go above and beyond for the people that they are assigned to help, and look to perhaps have every client served by both a caregiver who handles personal care and a home support worker to help with things such as meals and other day-to-day tasks as requested. Before starting their agency, the Uplift team built a solid business plan and checked out over 30 other home care agencies in Calgary to see where they might be able to improve. The company’s name, Uplift, reflects their wish to help increase the overall independence of the clients they work with, and to see their clients accomplish personal goals that might not otherwise have been possible if they had another home care company helping them with their care. Uplift Home Care also wants to ensure that the caregivers who work for them are treated well in terms of both their pay and the benefits they receive for their work. And while they haven’t set any goals as to just how many clients they would like to serve moving forward into the future, their number one priority is keeping the quality of care high for every client they serve. They also understand that it is very nerve-wracking and stressful for a client who might be considering switching home care providers. To alleviate this stress, they offer a temporary discount on the care rates they usually charge for all new clients who might like to “test” their services out to see if they are a good fit for handling their individualized personal care needs. To learn more about Uplift Home Care and how they might potentially be able to help you or a loved one in the future, go to their website at www.uplifthc.com or call Trafford or Garrett at 1-888-412-6828.
Conquering New Peaks by Amy MacKinnon
araplegic rock climber and former Paralympic athlete Mark Wellman, from Truckee, California, visited Edmonton this May to light a fire under our butts and get us outside participating in a variety of outdoor activities. Mark spoke to a group at ‘A Night with Mark Wellman’ where he showed pictures and videos of his adventures, and talked to those in attendance about breaking down barriers and creating their own adventures, however “everyday” or extreme they might be. His words struck a chord with many, who then decided to take his advice and try a new activity as part of the Outdoor Adventures program which introduced participants to either handcycling, rock climbing, canoeing, kayaking or trail running with the trailrider. Michelle Lebeuf describes Mark as “inspirational.” “I love the fact that Mark said that no matter what the disability is, or how severe, there is always a way to adapt the sport [for the person],” she said. The most exciting part of Mark’s visit to Edmonton was that he hosted the first ever adapted climbing workshop in Alberta at Vertically Inclined Rock Gym. This workshop was geared towards rock climbing instructors and guides, as well as those volunteering for the Outdoor Adventures rock climbing program. It was an afternoon packed with information on how to work with a diverse population of climbers, introduction to new equipment and setup options for those of differing ability levels. “I was very sceptical about my ability to pull my weight using the pulley system that Mark devised. However, I was quickly and pleasantly surprised! The system Mark devised is very simple, allowing just about anybody to learn and practice [rock climbing],” said workshop volunteer Margaret Conquest. Climbing some of the biggest rock faces in North America such as El Capitan? No problem. Sit-skiing across the Sierra Nevada mountain range twice? Piece of cake. Handcycling the White Rim Trail? This is all a stroll in the park...for Mark Wellman that is, but what about for the average individual who isn’t a former Paralympian, and may be trying activities for the first time? Here are some tips to ease your way into a new activity! Find a program in your area that has access to equipment and qualified staff to allow you to try an activity you are interested in, such as: • Start slowly and build some skill. The first time out will likely involve a lot of trial and error with the equipment and determining what will work best for you. Be patient and stick with it: the equipment will become more comfortable, and the activity will become easier the more you participate. • Talk to others who have tried an activity you are interested in. • Ask questions of the program staff to make sure you know what the activity involves and how it will work for you before you try it out.
CPA (Alberta) staff member Edgar Jackson tries his hand at rock climbing. • Check intimidation at the door. You’ve done your home work about the program and the activity, now it’s time to jump in and try it! Can’t find a program or it doesn’t exist in your area? Check out the contacts below or contact Amy in the Edmonton office of the CPA(Alberta) and we can arrange to have you try an activity in your area or if there is enough interest, set up a program in your community. Calgary handcycling: Stephen Burke at sgburke@ucalgary. ca or (403) 220-8008. Southern Alberta Rock Climbing, handcycling, excursions with the trailrider, canoeing and more: Rocky Mountain Adaptive Sports Centre at www.rmasc.ca, email@example.com, or (403) 675-9000. Edmonton and area handcycling, rock climbing, trail running with the trail rider, canoeing, and kayaking: amy. firstname.lastname@example.org, (780) 424-6312 ext. 2231. Happy Adventuring!
Patients learn about illness,
share experiences without leaving home by Tom Olsen
ober t Harkes walks from the living room to the kitchen, then back again. The effort leaves him breathless.“I’m labouring right now,” he says, face flushed, breathing heavy. The 52-year-old Calgarian holds up his left hand, signalling a time out from where he sits, slightly hunched on an easy chair. “That’s why they call it a chronic condition,” he says. “It’s always with you.” Harkes suffers from a rare genetic lung disorder called Alpha1 antitrypsin deficiency. The realities of a life ravaged by this debilitating disease means the one-time skier, hiker and baseball player now needs to stop to catch his breath on the trip to the car outside. He’s on oxygen almost 24 hours a day and rarely gets out of the house, especially in winter. As much as the physical toll, Harkes had also fallen into a deep funk. “I was angry at everyone. I was snapping at my wife, my kids. I would just react badly,” he says. Then Harkes was referred to a Canada-wide online Chronic Disease Self-Management pilot program called Healthy Living Canada, managed by Alberta Health Services (AHS), in partnership with the National Council on Aging and California’s Stanford University. He says it changed his whole outlook. “It gave me self-worth. It showed me I can help people and help myself, and that really boosted my self-esteem,” says Harkes. “Unless you have a chronic illness, it’s hard to understand emotionally how you deal with day-to-day things in life; how you keep yourself out of depression.” Online sharing with other participants became a major part of the benefit, as did being guided through a course of study that pushed him to learn more about his ailment and be better able to communicate with health-care providers. “I just can’t say enough about the program – I’d do it again in a minute,” he says. The online self-management program was adapted from the in-person Chronic Disease Self-management Program, available in many Alberta communities. It was developed to expand the scope of the original program to reach people who live in remote areas, or who are too debilitated to get to in-person sessions. “With the online program, AHS was able to reach that many more people,” says program manager Lena Jorgensen. Symptom identification and management are a key part of the learning. “People are taught what a normal symptom is and what makes a symptom worse; for example, stress or eating poorly or not sleeping well,” she says. “They also learn different techniques to manage that symptom better.”
The online self-management program is for people with chronic conditions such as diabetes, chronic pain, fibromyalgia, heart conditions and arthritis. It is designed around a formal curriculum that emphasizes problem solving, action planning and confidence building through a workbook and a series of online discussion topics and exercises. Each group consists of about 25 participants with two facilitators. David Beale, a participant from Fort Kent in northern Alberta, says he benefits from learning about his condition, which helps him work with health-care professionals to determine which symptoms are normal and which require further medical attention, such as a trip to the doctor or emergency room. “The patient takes more responsibility for their outcomes,” says Beale. “It eliminates the option of passing the buck. You don’t get to say, ‘I’ll let the doctor worry about it.’ It’s your body; it’s your life; you have to take responsibility.” Outcomes and response from participants are so positive that AHS is working to develop a plan to move it from a pilot program to an ongoing service. Reprinted with the permission of Alberta Health Services.
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Neuropathic Pain by Cliff Bridges, British Columbia Paraplegic Association
on’t try to tell AJ Star that the pain is all in his head. The Kelowna resident suffers from excruciating bouts of neuropathic pain as a result of an incomplete T-2 through T-6 spinal cord injury that he sustained in 2006. “I have a diffuse pain, mainly burning, and a buzzing sensation in my buttocks, hamstrings, calves, and bottom of my feet,” Star said. “The pain changes regularly in severity. From the moment I open my eyes until I doze off to sleep at night, I’m dealing with pain. The worst is waking out of a deep sleep in spasm with nerve pain. Sometimes I’m unable to get out of bed. I’ve been taking maximum doses of baclofen, gabapentin, and 400 mg of morphine every 24 hours just to make it through each day since my accident. It has severely impacted my daily life, as the pain dictates how my day will go.” Star is far from alone. According to the US National Institutes of Health (NIH), two thirds of people with SCI report neuropathic pain, and a third of those rate their pain as severe. The NIH also provides the grim reality in terms of treatment: “There is no uniformly successful medical or surgical treatment to prevent or reduce [ neuropathic pain]. The mainstays of neuropathic pain treatment are antidepressants and anticonvulsants, even though they are not uniformly effective.” Little wonder then that people with SCI rate neuropathic pain as one of their most pressing issues. For example, the Rick Hansen Institute recently conducted an online poll asking which secondary complication of SCI is most important to focus research on. Neuropathic pain was the second highest response, behind bladder function and urinary tract infections. Researchers have been listening—not only to people with SCI, but to others who suffer from related types of neuropathic pain from other causes, such as amputation or cancer. Around the world, scientists are now engaged in hundreds of research projects aimed at understanding the mechanisms of neuropathic pain and finding ways of treating it effectively. One of those researchers is Dr. Min Zhuo, professor of physiology at the University of Toronto’s Faculty of Medicine, the Canada Research Chair in Pain and Cognition, and Michael Smith, Chair in Neurosciences and Mental Health. For more than 10 years, Zhuo has theorized that there must be a way of “switching off” neuropathic pain in the brain—a considerable departure from the approach taken by most researchers, which involves blocking the pain at the level of the offending nerve cell. In a paper published in the journal Science Translational Medicine, Zhuo and his team described how they’ve developed a new drug named NB001 which does exactly that: switch off neuropathic pain directly in the brain, albeit in just mice for now. In their paper, Zhuo and his team explained how their new drug, NB001, produced powerful pain-killing effects in mice
Is it all in your head?
Dr. Min Zhuo, Professor of Physiology at the University of Toronto by blocking a particular enzyme known as type one adenylate cyclase (AC1). This enzyme, Zhuo said, plays a key role in allowing neuropathic pain to take place. “It all started more than ten years ago,” he said. “In 1998 or 1999, we found that many neurons in the cortex of the brain, including the anterior cingulate cortex, responded to injury at the peripheral level. We believed at that time that such long-term changes in the brain may play important roles in long-lasting chronic pain.” Zhuo explains that neuropathic pain begins with a constant barrage of inappropriate pain signals originating at the beginning of the pain pathway—nerve cells called nociceptors that were initially altered by injury such as SCI or by diseases like cancer. Over time, this barrage of pain signals leads to changes in the section of the brain that’s responsible for perception and memory. It’s here that brain cells become hypersensitive, results in connections between these cells being strengthened and the pain signals becoming amplified. The culprit that leads to this hypersensitivity is AC1. “AC1 contributes to long-term potentiation, or strengthening, of sensory synaptic responses in the brain, or what you may call ‘pain memory,’” Zhuo said.”Such enhanced cortical activity may directly cause chronic pain in patients.” In previous studies, Zhuo and his team have demonstrated the role of AC1 in mice by removing the gene responsible for its production. This resulted in neuropathic pain being significantly reduced or even eliminated. The mice retained normal sensitivity to acute pain—the type needed for survival. Armed with this knowledge, a new goal emerged for Zhuo:
health find a drug that could selectively prevent formation of AC1 in an affected region of the brain. The team used a cell model to screen for compounds that could do this. One of these compounds, NB001, appeared to work well. The next step was to test it on mice—lo and behold, it powerfully reduced neuropathic pain. Gradually, other important facts emerged about NB001. It only seemed to work well in the targeted region of the brain, and didn’t affect AC1, or other isoforms of adenylate cyclase, in other parts of the body. Low doses were required for it to be effective, and it did not significantly affect acute pain sensitivity (the “good” pain), or cause cognitive or physiological side-effects. In short, NB001 seemed to have promise as an effective treatment for neuropathic pain in humans, including people with SCI. “One of my research projects was funded by the International Spinal Cord Research Foundation, and we are planning to test the effects of NB001 on SCI-triggered cortical changes,” Zhuo said. He and his team now have a patent on components of NB001, and are actively looking for industrial and investment partners to move the drug into clinical trials. He added that pre-clinical toxicity tests and other experiments are needed before permission is granted to conduct human trials. In particular, because AC1 is present in other parts of the brain that process memories, such as the hippocampus, it needs to be ensured that NB001 does not affect this type of functioning. No side-effects of this type have shown up in the mice experiments. “I believe that NB001 or future generation inhibitors of AC1 will help to reduce chronic pain in patients with SCI,” said Zhuo, whose major research interest is this work. “I believe that understanding changes in brain areas related to pain is the key to help us to design better drugs for controlling SCIrelated chronic pain and chronic pain induced by other injuries and cancer. Seeing many patients suffering from chronic pain and my desire to help those patients are the major driving forces for my work. I have received many e-mails from patients’ wives, daughters, sons, and friends requesting information about NB001. This just makes me feel that I am working in the right field.” Meanwhile, AJ Star and a legion of other sufferers of neuropathic pain wait for further breakthroughs, often less than patiently. “This pain has completely changed my life,” Star said. “I feel as though I am surviving everyday instead of living a life. Hopefully sometime in the future, medicine will grasp a better understanding of the subject and how to deal with it.”
Neuropathic Pain: A primer To understand the significance of Dr. Zhuo’s discovery, let’s back up and take a look at what neuropathic pain is—and what it isn’t. Neuropathic pain vs. acute pain: Neuropathic pain shouldn’t be confused with acute pain—for example, pain in the shoulders from overuse. Generally, acute pain is considered “good pain” in that it serves a purpose, letting you know something’s wrong with your body (think of putting your hand on a hot frying pan). This type of pain also responds well to traditional medications including aspirin, ibu-
profen and stronger painkillers. And if it’s due to injury, this type of pain disappears once the injury has healed. Neuropathic pain is generally accepted as pain that results from functional changes in neurons, which makes them hyper-excitable—they begin firing intense pain signals to the brain for little or no reason. This type of pain has no clear benefit. SCI neuropathic pain: In the case of SCI, neuropathic pain can be further broken down into two categories. Pain can be at the level of the injury, due to damage to the actual nerve roots or to the spinal cord itself. Doctors may refer to this as “segmental deafferentation” or “girdle zone pain”. A common place for this pain to appear is from your stomach around to your back, at the level of your injury. This can develop during the first few weeks after initial injury, or more slowly over time. Pain diffusely below the level of injury appears to be due to actual changes that have occurred in the central nervous system—the interruption of nerve pathways and the formation of abnormal connections within the spinal cord near the site of injury. This type of pain is usually the most intense—people have described it as tingling, numbness, aching, throbbing, burning, or squeezing. It often occurs in specific body regions, on either side of the body or both, and may be constant or intermittent. Current treatment options: Regardless of the cause, neuropathic pain responds poorly, if at all, to the wide range of pain treatments that exist—from medications and acupuncture, to spinal or brain electrical stimulation, and even surgeries. Treatments that do have modest effects on neuropathic pain often dull acute pain—the type of pain that has a very useful role to play in our everyday life. Add to the limited benefits a large number of risky side-effects and the possibility of a raised level of paralysis, and it’s little wonder why there’s such a critical need for continued research in neuropathic pain. The current state of research: Not surprisingly, a great deal of neuropathic pain research has focused on stopping pain at the source, in the specialized pain-signaling nerve cells known as nociceptors. In an uninjured nervous system, nociceptors only do their job during a normal painful encounter. With neuropathic pain, nociceptors go on a rampage, firing intense pain signals to the brain without any external pain stimulus or injury. The active mechanism in nociceptors are voltage-gated sodium channels (VGSCs). Sodium-channel-blocking drugs appear to have promise as a treatment, but VGSCs contribute to more than just pain processing—they are vital to the proper functioning of many organs such as the brain and heart. Existing sodium channel blocking drugs—for instance, gabapentin—are only partially effective and poorly tolerated, as they target all members of the VGSC family in the body, and at doses sufficient to reduce pain, they can cause confusion or interfere with vital organ functioning. And so the search is on for sodium channel blocking drugs that target only the specific VGSCs involved in neuropathic pain. However, success in this area is proving to be elusive, which is why Zhuo’s apparently successful focus on the receiving end of the pain conduit, the brain, is so intriguing. Spinal Columns
Bladder Cancer & SCI by Kathy Wahlgren
© 2011 Paralyzed Veterans of America, by permission of PN magazine
ur urinary system consists of various components. The kidneys are the two bean-shaped organs on the right and left of the abdomen. They remove waste products from the blood and produce urine. Urine is transported from the kidneys via long tubes (ureters) to a hollow organ in the pelvis called the bladder. The bladder is made of three layers of tissue. The mucosa is the innermost layer, the lamina propria is the middle layer, and the muscularis is the outer layer. Urine is collected and stored in the bladder until it reaches its capacity and then is drained from the body through a narrow tube called the urethra. The normal shade of urine to strive for is the colour of straw.
what is bladder cancer? Many ailments can disrupt the natural balance and proper functioning of the urinary system. One such ailment is bladder cancer. This type occurs when there is an abnormal uncontrolled growth of cells in the bladder. The cancer cells most often originate in the bladder’s lining and have the potential to grow into the deeper layers of the bladder and spread (metastasize) to other organs. When cancerous cells are detectable only on the bladder lining, this is called superficial bladder cancer. Invasive bladder cancer occurs when the malignant cells invade the deeper layers, other surrounding organs, and the lymph nodes. The most common method of classifying the cancers is the Tumor, Nodes, Metastasis (TNM) staging system. Following are the four stages used to categorize bladder cancer tumors: Stage 0: Noninvasive tumors that are only in the bladder lining Stage 1: Tumor goes through the bladder lining but does not reach the muscle layer of the bladder Stage 2: Tumor goes into the muscle layer of the bladder Stage 3: Tumor goes past the muscle layer into tissue surrounding the bladder Stage 4: Tumor has spread to neighboring lymph nodes or to distant sites (metastatic disease)
who is at risk? According to the American Cancer Society, 70,000 Americans develop bladder cancer each year. Survivors of spinalcord injury are of an even greater risk for being diagnosed with this type of cancer. In fact, the rate of developing it is approximately three per cent higher among people with SCI than in those without. In addition, after 20 years postinjury, the incidence increases with age. Why SCI survivors are more susceptible is not entirely clear, but it is believed related to chronic complications resulting from a neurogenic (overactive or underactive) bladder. Although the exact cause of bladder cancer is unknown, it has identifiable risk factors.
Risk factors for bladder cancer include: Smoking: Nicotine and marijuana smoke contain carcinogens. These cancer-causing chemicals are carried to the urine. Smokers have more than double the risk of getting bladder cancer. Exposure: People who manufacture certain industrial chemicals such as dye, leather, rubber, or aluminum have a higher risk. Gender: Men are three times more likely to develop bladder cancer than women are. Race: Bladder cancer is more prevalent among Caucasians. Age: Being over the age of 60 increases a person’s chances for bladder cancer. Diet: People who eat diets rich in fried meats and animal fat are more prone. Prior history: People are at a higher risk if an immediate relative has bladder cancer, or if an individual has previously been diagnosed with it. Cancer of the bladder can have a moderate
health to high recurrence rate. Bladder Irritation: Long-term and repeated bladder irritation caused by chronic urinary tract infections, kidney stones, and indwelling catheterization can also increase a personâ€™s susceptibility.
symptoms As with most cancers, early detection is critical. Awareness of the signs and symptoms of bladder cancer is key to assisting in early detection. Unfortunately, many of the symptoms related to bladder cancer can be similar to those of a UTI, which could make an early discovery difficult for a person with SCI who has frequent UTIs. The more common symptoms of bladder cancer are: Blood in the urine (hematuria) Increased frequency of urination Increased urgency to urinate Decreased urine output Abdominal pain Seniors might experience lethargy and confusion instead of any urinary changes. People with any of these symptoms should immediately contact their medical provider(s) .
Diagnosis and Treatment
Various types of tests are available to assist in diagnosing bladder cancer. One test used is a CAT scan. This procedure takes a series of pictures inside the body and uses a computer connected to an x-ray machine.
Another possible diagnostic tool is analysis of a urine sample (urinalysis). During this test, the urine is checked for abnormalities in color and content. The kidneys, ureters, and bladder can also be x-rayed as contrast dye passes through them to detect blockages (intravenous pyelogram). During a cystoscopy, a camera examines the inside of the bladder for unusual lesions. Usually, during this time, a bladder biopsy is done as well. When a bladder-cancer diagnosis is made, several treatment options are available: surgery, chemotherapy, radiation therapy, and biological therapy. Treatment depends on the stage of the tumor, severity of symptoms, and prior treatment. The lower the stage, the better the chances are for a full recovery.
prevention People, especially those with SCI, can take measures to decrease their chances of developing bladder cancer: (1) If you smoke, quit. (2) Take steps to minimize the frequency of UTIs. Drink more water to flush out possible bacteria introduced into the bladder, wash your hands prior to self-catheterization, do not overfill leg bags, use a new catheter for each catheterization, regularly evaluate your bladder management program with your health care provider, and obtain yearly screenings of the bladder and upper urinary tract from a urologist. (3) Be sure to eat a healthy, well-balanced diet to maintain overall physical strength.
FROM MY PERSPECTIVE by Larry Pempeit
his year the CPA (Alberta ) is celebrating its 50th year in existence. In addition, I am celebrating my 29th year with the association. When I think back to when I started with CPA (Alberta) in 1982, I remember going to the interview thinking that if I got this job I would only stay for a few years before moving on. It sure didn’t work out that way! When I joined the organization, it had two offices; one in Edmonton and one in Calgary. There were two full-time and one part-time staff members in Calgary and six in Edmonton. I was one of the rehabilitation counselors and had a caseload of over 100 individuals throughout northern Alberta. Managing that many clients wasn’t easy, so what I did was go down the list phoning each of the individuals on a regular basis, which usually meant once every two or three months. I also remember taking field trips to all regions of northern Alberta, from Lloydminster to Grande Prairie and north to Slave Lake and south to Red Deer. I really enjoyed those trips visiting people in their own homes. Many of those individuals continued to phone me long after I moved away from counseling. They were such great, resilient people who often solved their own problems because there was no one else to turn to. I felt privileged to be of some assistance. Thinking back, it was risky business traveling in those days because I would venture out on the road all alone, with no cell phone, often in inclement weather. I remember one trip, when halfway to Lloydminster I blew a tire. I slowly drove into a little hamlet and found someone working in their yard who was willing to change the tire for me. I also remember getting stuck in the snow and thought I might freeze to death, but luckily for me a Good Samaritan came along and got me out. These adventures all became part of the great memories of working at CPA (Alberta). Those adventurous days are long gone, thankfully. Now CPA (Alberta) service coordinators have cellphones, four-wheel-drive vehicles and try not to venture out if the weather is bad. The good and lasting relationships with clients, however, still exist. One of the major services that hasn’t changed over the years is that of providing information to members and the community. Rehabilitation counselors were always a wealth of information and they freely passed it on to those who needed assistance. CPA (Alberta) service coordinators are the same today. Spinal Columns, our major publication, was first published in 1983. It became the voice for CPA (Alberta) and the rest of the province. It remains a first-class publication to this day. CPA (Alberta) has really grown over the years. We now have nine offices throughout the province and over 55 staff. We are a well recognized organization that provides a wide range of services. This organization is still in growth mode and will go on to accomplish many more great successes in the future. I am proud to be part of that history.
Larry when he joined the CPA in 1982.
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Self-Service Discrimination by Linda Welch
ust as vehicle manufacturers begin to adapt technology to increase options for drivers with disabilities, oil and gas giants are pulling the plug on support incentives at gas stations across the province. “I’ve really had some bad experiences at self-service pumps,” says quadriplegic driver Sam Halabi, Provincial Operations Officer, with Alberta Tourism, Parks and Recreation. As Vehicle Fleet Coordinator, in West Central Area/Edmonton office, Halabi travels all over Edmonton and surrounding districts for workrelated appointments. Paralyzed in 1995, Halabi has never let his disability stand in his way. However, in recent letters to Imperial Oil and CPA (Alberta), Halabi says the removal of fullservice options at the pump is discriminatory to drivers with physical disabilities. “The local Esso service station in Spruce Grove, as of April 30th 2011, no longer offers full service gas” he tells CPA (Alberta). “The manager stated he had no choice and it was a directive from Esso Canada. That leaves only one full-service station between Stony Plain and Spruce Grove.” Halabi voiced his concerns in a letter to Imperial Oil. “As a disabled, wheelchair bound person, I’m appalled by this move!” he writes. “I have been buying fuel at Esso stations for 16 years. I would like an explanation for this closure and urge you to reconsider this move.” Halabi is not the first person with a disability to voice concerns regarding the closure of full service gas stations. On April 14, 2011, CBC featured a story by Tara Webber, relating to the outcry from wheelchair users. “The disappearance of full-service gas stations is making driving more difficult for people with mobility issues,” writes Webber. The story features CPA (Alberta) Calgary Peer Coordinator, Marilyn Erho, a quadriplegic whose independence is supplemented by her driving abilities.
Marilyn Erho is a resident in the far southeast of Calgary. Erho commutes Monday to Friday to the CPA office in northern Calgary. “My morning commute generally takes about 30 minutes. During the day, I travel throughout the city working with others who have a spinal cord injury. My ability to drive is important to my independence and my job as a Peer Coordinator and my day to day personal activities. Using another method of transportation would limit my activities and job.” CBC repor ted that Access Guide Canada lists 50 full-service stations in Calgary. CBC phoned all of them, and found only five that remain full-service. In the United States, access to full-service gas stations is a growing issue. The Americans with Disabilities Act provides recommendations to improve access, stating that gas stations must: • Provide refuelling assistance upon the request of an individual with a disability. A service station or convenience store is not required to provide such service at any time that it is operating on a remote control basis with a single employee, but is encouraged to do so, if feasible. • Let patrons know (e.g., through appropriate signs) that customers with disabilities can obtain refuelling assistance by honking or otherwise signalling an employee. • Provide the refuelling assistance without any charge beyond the self-service price. Sam Halabi received similar advice from Imperial Oil. He was told to phone the self-service gasoline station he wanted to fill up at 24 hours before arriving to make arrangements to have someone there to serve him gas. Halabi was outraged, stating, “It is discriminatory and not practical to have persons with disabilities call 24 hours in advance to obtain fuel,” he says, pointing out the fact that only one person works at most self-service stations. This is no coincidence according to Halabi: “Gas companies used to provide cash incentives to franchise owners that offset expenses of hiring more employees. However they have recently discontinued these incentives, opting instead to encourage self-service gasoline stations that are equipped with newer technologies.” Readers and others affected by this practice are encouraged to forward this article, together with personal experiences, to executives of all the various oil companies and copying their MP and MLA.
An Awakening to Accessibility by Zachary Weeks
Edmonton-Calder MLA Doug Elniski (left) and Edmonton Mayor Stephen Mandel (centre) chat with CPA (Alberta) staff member Zachary Weeks.
CPA (Alberta) launches Chair-Leaders “Enabling Access” campaign throughout the province
ith spring in the air, the month of May presented the opportunity for numerous community leaders throughout the Province of Alberta to try something different for a change. The talk of the town was all about accessibility. Community leaders ranging from city mayors, MLAs, general managers and company presidents to members of the media, law enforcement and medical community all took part by spending a day in a wheelchair. The objective? To gain first-hand knowledge and raise much needed awareness on issues surrounding accessibility for those who use mobility aids such as wheelchairs and scooters on a daily basis. Introduced for the first time in May of 2010 in Edmonton, the Chair-Leaders “Enabling Access” campaign had coverage from various local media as prominent citizens wheeled their way through their day. Garnering tremendous support for this event, the CPA (Alberta) rolled forward in its vision of enabling access for all. This year during the month of May, which is also Spinal Cord Injury Awareness Month, this unique event branched out and welcomed participants from the cities of Calgary, Grande Prairie, Red Deer and Fort McMurray. “I painfully discovered that simple things such as wheeling along sidewalks are not as simple as one would think. I also found that the people of Edmonton are incredibly gracious and helpful. It was a truly eye opening experience, one that has forever changed my perception of life in a wheelchair,” reflects Paul Nemetchek of the Wildrose Party. Nemetchek was one of over 30
Chair-Leaders who navigated a manual wheelchair and encountered numerous barriers to access such as doors without power assist buttons, narrow doorways and curbs, among other issues. While we have made great strides towards an inclusive environment for all when it comes to universal and barrier-free design, we still have room for improvement. “It is important we continue working to make city services as accessible as possible and ensure staff are provided opportunities such as this event to interact and spend time with whom we serve,” says Karim Rayani, Manager of Access Calgary. The Canadian Paraplegic Association (Alberta) is one of only five provincial organizations to champion the Chair-Leaders initiative across Canada. Community leaders who agree to take part in this unique event are also encouraged to raise pledges of support from within their networks of contacts. These funds are used to assist CPA (Alberta) in continuing to provide services to those with spinal cord injuries and other physical disabilities. While the Chair-Leaders “Enabling Access” events do incorporate fundraising, the primary objective is to raise awareness of the issues Albertans with physical disabilities face when it comes to accessibility. For further information or to participate in next year’s campaign, please contact Zachary Weeks, Community Development/ Communications Coordinator at (780) 424-6312 or by email at email@example.com.
Edmonton Mayor’s Awards
This year’s recipients: universal design in architecture
Non-Residential Robbins Pavilion, Royal Alexandra Hospital, by DIALOG and Ron Wickman-Accessibility Consultant: All building doors are automatic and patient room doors are hold-opens; there are no curbs in the parking areas; all patient rooms have “wet” washrooms, which do not allow the water to leave the washrooms. Terwillegar Community Recreation Centre by Sahuri + Partners Architecture Inc. and Ron Wickman-Accessibility Consultant: This multipurpose recreation centre was designed for people with all types of disabilities, including Braille signage, ramps and moveable pool floors, large shower areas with bench seats, colour contrast, and accessible fitness equipment.
employers Paid Employment Budget Car and Truck Rental: Budget has been in a partnership with EmployAbilities for several years, working to increase the representation of persons with disabilities in its workforce. Volunteer Positions Canadian Red Cross: The Canadian Red Cross building is fully accessible and equipped with elevators and wheelchair accessible washrooms are available on every floor. The Red Cross works to make sure all its volunteers feel included and appreciated.
Edmonton Mayor Stephen Mandel recognized those who helped improve the city for people with disabilities.
outstanding service Cristina Molina: Cristina has been an advocate for persons with disabilities for 36 years. As part of her work with the Elves Special Needs Society, she oversaw the purchase of the Elves and Youth Building, and is working on the building of two new rooms. Peter Iglinski: Peter founded the Brain Awareness Movement at the University of Alberta Sylvia Wolowidnyk: Sylvia works with Richard, a Good Samaritan Society client, volunteering at the North East Community Health Centre.
ewen nelson award for self-advocacy Margaret Conquest: Margaret has worked in a variety of roles, at the Rick Hansen Man in Motion event, with CPA (Alberta), and the Premier’s Council on the Status of Persons with Disabilities. Daisy Stacey: Born with Spina Bifida, Daisy is a teacher, a leader and role model who has given hundreds of speeches at schools, agency functions and government conferences.
Photo courtesy of the City of Edmonton Edmonton Mayor Stephen Mandel presents Margaret Conquest with the Ewen Nelson Award for Self-Advocacy.
recognition The 2011 Canadian Paraplegic Association (Alberta)
Charity Golf Tournaments Many thanks to our provincial sponsor who sponsored all three of our golf tournaments this year!
Edmonton July 28, 2011 at the Glendale Golf and Country Club Our 12th annual tournament was held for the first time at the Glendale and for the first time in July rather than our traditional August time slot. Nearly every golfer remarked on how much they enjoyed the course and the day as we were blessed with one of the rare sunny days that the month of July offered.The day featured Gold Medal Paralympian Ross Norton as Master of Ceremonies and Mark Trinier was our guest speaker who captivated the audience with his remarkable story. Many thanks once again to our long time tournament sponsor Ron Hodgson Chevrolet Buick GMC Ltd. & Southgate Buick GMC Ltd. Many of the prizes this year were donated generously by Double Diamond Electronics Ltd.
recognition CALGARY July 13, 2011 at the COUNTRY HILLS GOLF CLUB As weather is a huge unknown in Calgary, golfers were asking at registration, “Are we going to be able to golf today?” Fortunately, the rain stopped long enough to complete 18 holes of golf at Country Hills Golf Club. Entertaining highlights of the day included: Master of Ceremonies Peter Marr; Auctioneer Bill Brown; and Clark Robertson, a ver y funny Don Cherry impersonator. Our friends from Spolumbos, M & M Meats, Marble Slab and Creations Chez Monique served up some tasty food to our hungry golfers. OneWest Event Design & Rentals created their magic in decorating the club house for a stunning look. Thank you to all the volunteers, sponsors and those who helped make this event a memorable time.
RED DEER AUgust 12, 2011 at the riverbend golf course The 13th annual Red Deer tournament had beautiful weather. Highlights of the beautiful day were Jon Young winning a $5000.00 Hole in One Prize. Participants enjoyed great on course food from Mr. Mike’s Steakhouse & Bar and M&M Meat Shops. The very funny Abbey White (from KG Country) was a great addition to the dinner as our MC along with Duane Daines as our Auctioneer. The Live Auction had two trips, cooking lessons and a signed Pete Rose jersey and ball that ensured a few bidding wars.
And a very special thanks to volunteers and staff across the province who gave us the opportunity to present three wonderful golf experiences to everyone who came. Spinal Columns
doctor of laws
by Michael Davies-Venn
Rick Hansen on the Great Wall of China
ick Hansen was 15 when his spine was shattered in an accident and he lost the ability to walk. During fall convocation at the Jubilee Auditorium on Thursday, Nov. 17, Hansen, who received an honorary doctor of laws degree, said lying at the hospital bed, he could not imagine life being any worse. He said he could have sold his soul for use of his legs, but with support from friends, family and professionals, including those from the University of Alberta, he was able to realize his dream of representing Canada at the Paralympic Games. Hansen recounted how encouragement from people like the late U of A professor Gary McPherson helped him pull through. “The words of Gary are in my head,” Hansen said. “‘It’s not what happens to you, it’s what you do with it that counts.’ These role models helped me realize that life was not over, it was just beginning.”
And that beginning was nothing like what was to come. Hansen went on to win 19 international wheelchair marathons, six Paralympic medals and nine gold medals at the 1982 Pan American Wheelchair Games. He raised $26 million, which was further leveraged to $246 million, for spinalcord injury research by travelling through 34 countries. He says the U of A spirit was with him throughout the journey. Hansen encouraged students to have a good outlook on life. “What an incredible way to celebrate the 25th anniversary of the Man in Motion tour than to be here in front of you to be honoured. To the graduates, I say, congratulations to each and every one of you. As you go forward, these lessons, these moments as you celebrate your success will carry forward in a journey that’s untold and unknown. That it’s your attitude that will sustain you. It is not what happened to you, it’s what you do with it. Keep up the good work and never ever give up.”
ST-200 PERSONAL TRACKER The ST-200 combines the value of GPS tracking with “LIVE” 2 way cellular voice technology including an easy to use SOS feature. Push the SOS button and the ST-200 will automatically call a preset phone number stored in the device. “Electronic Intervention” The ST- 200 operates “Hands Free” so an SOS situation can be heard, assessed and dealt with efficiently. SMS Text & E-mail alerts will be transmitted to select individuals in case of an incident. The ST-200 has 4 preset phone numbers which can be simply dialed by pressing 1 of 4 buttons. After a spinal cord injury occurs, maintaining independence and leading a life of self-reliance can become a challenge. Utilizing the technology of the ST-200 will add empowerment, dignity and an extra layer of “Electronic Security” that has never been an option before.
Key Features: • Small, stand alone GPS tracking device • Rechargeable internal battery pack • SOS button • 24+ hour battery life • Alarm function. Ideal for scheduling • SMS Text and Email notifications • Up to one minute GPS reports • Speed alerts • Create safe zones and no go zones • 2 way live voice technology • 4 preset auto dial phone numbers *In adequate cellular/GPS coverage
SafeTracks GPS Solutions Toll Free 1-877-761-4477 www.safetracksgps.ca
what’s new in
Alberta CALGARY Talisman Centre
The Calgary Talisman Centre is open for (accessible) business again! The Talisman Centre has long been the community facility for people of all abilities who are interested in actively pursuing lives of wellness and good health to get physically fit. However, the accessibility of the centre has always been an issue because when the facility was built in 1983, accessibility standards weren’t as stringent. In recent years, people using wheelchairs, pushing a stroller, or experiencing difficulties using the stairs were regularly getting stuck in the original main facility elevator. Recent renovation improvements, which occurred over 2010, have markedly improved accessibility. A recent visit revealed that all of the hard work and money spent by the centre’s management has really paid off and has improved how individuals with disabilities can utilize the facilities. While the Talisman Centre has always had a great selection of accessible fitness equipment, it now boasts a completely renovated and updated central elevator and vast improvements in both the location and number of disabled designated parking stalls. A hot tub, digital wheelchair scale, and two pool lifts have also been added. The centre is now a great spot for people with special needs to work out. The Talisman Centre has a continued philosophy of inclusiveness which truly influences not only their employee training and selection and placement of equipment, but all of their communication and daily interactions with people with disabilities who enter their facility. If you are thinking about keeping physically fit, consider the Talisman Centre as a potential place to do so. Individuals with limited incomes are only required to pay 25 percent of the regular drop-in or membership fee prices, thanks to the City of Calgary Fee Assistance for Recreation program.
Sailing with Disabilities It’s hard to believe that only a few short months ago, we were enjoying a nice sunny day at Glenmore Park. The Calgary Disabled Sailing Club had their boats, lift and volunteers ready and many set sail and enjoyed a peaceful and relaxing ride on the water. We are thankful to Shoppers Home Health Care for sponsoring this event and for bringing out some accessible vehicles for participants to look at. Everyone enjoyed a great BBQ lunch, socializing, sailing and enjoying the nice weather. Check out the past peer events at www.cpa-ab.org/programs_services/peer_community/calgary. Thanks again to Shoppers Home Health Care for their invaluable support. Peer Trade Show Driving, Extreme Sports and Fitness are all areas that people had an interest in. On October 19, 2011 Calgary hosted their peer trade show – Waking Up Our Minds and Bodies. Vogel Lawyers LLP generously sponsored this event. The purpose of the Trade Show was to bring our members and colleagues together from across southern Alberta to learn from each other and share personal experiences. We also had 22 vendors who were able to share their experiences and showcase exciting and new products and services which was beneficial to those in attendance. AMA Driving gave a great presentation for people with SCI to help them stay mobile, maintain their independence and keep active. AMA has teamed up with the CPA (Alberta) to develop an adapted driver training program in Calgary. Next, we had four speakers from 9 Lives Adventures. They were all a great motivation as they spoke about how they are helping people living with limited mobility and breaking down social restrictions. Last, we had information on the new SCI Fitness & Wellness Centre. CPA (Alberta) is offering an aggressive exercise program to individuals who live with a spinal cord injury. The concept of aggressive exercise is to assess the person below the point of injury and from there design a personalized program that will focus on one’s overall fitness and wellness as it relates to their disability. Thank you to all the vendors, those who attended the trade show and Vogel Lawyers LLP for sponsoring this event.
EDMONTON Sailing with Disabilities On Saturday, September 17, the CPA (Alberta), the Disabled Sailing Association of Alberta (DSAA) and the Wabamun Sailing Club hosted a day of Sailing With Disabilities at Lake Wabamun, west of Edmonton. Fifteen participants from Grande Prairie, Hinton, Camrose and Edmonton took advantage of the opportunity to be introduced to sailing in boats designed for people with disabilities. Thanks to TransAlta for their sponsorship and the Friends of the Wabamun Library for their help with the excellent lunch. Everyone had a great time on a beautiful day. Volunteers from the sailing club
r egions GRANDE PRAIRIE The City of Grande Prairie will offer expanded public transit service through $1.1 million in capital funding from the provincial Green Transit Incentives Program (GreenTRIP). The city will use this funding to purchase four new low-floor buses for Grande Prairie Transit. “GreenTRIP is a part of this government’s commitment to supporting communities as they plan for the future, making transit more accessible and better connecting Albertans,” said Premier Ed Stelmach. “Grande Prairie is growing rapidly and this funding will enable the city to provide more residents with effective public transit for years to come.” Sailing on Lake Wabamun. helped participants into and out of the boats and sailed with them to teach them how to manage the sails and rudder. Club members even stood chest-deep in the water to steady the boats while loading participants. Ryan and Gary from DSAA Calgary worked tirelessly to ensure a safe and fun day for all. Plans are being laid to organize an even better event next spring. The club is looking to make improvements to the facility for accessibility and consideration is being given to dock improvements and perhaps even the purchase of boats for use throughout the summer. EmployAbilities Employment Centre EmployAbilities Career and Employment Centre in Edmonton is now open for business! EmployAbilities offers services to people with disabilities who may have a medical, sensory, mental, developmental or physical disabilities and who are looking for a job. EmployAbilities Career and Employment Centre commitment is to assist people with disabilities, particularly those facing barriers to employment to get the skills and information they need to become successful in the workplace. EmployAbilities offers help with job interview techniques, access to job postings, assistance with resumes and cover letters, information on employment standards, labour laws, health and safety in the workplace, government programs and services and much more. Visit them at their offices on the 4th floor of 10909 Jasper Avenue or give them a call at (780) 423-4106. New Low-Floor Buses
One of Grande Prairie’s new low-floor buses. The $2-billion GreenTRIP program provides one-time capital funding to support new and expanded public transit throughout Alberta. This helps make transit more accessible, and provides Albertans with a wider range of public transit options for local, regional and intermunicipal travel. “We recognize the vital role public transit plays in building a world-class transportation system, promoting vibrant communities and enhancing Albertans’ quality of life,” said Luke Ouellette, Minister of Transportation. “Adding more public transit in the province will get cars off the road and help foster Alberta’s growth in a responsible, environmentally-conscious way.” The four low-floor buses the city plans to purchase will be wheelchair accessible. Two will be used to replace existing high-floor buses, which are not wheelchair accessible and are less fuel efficient.
what’s new in
GRANDE PRAIRIE (cont.) The other two buses will be used to provide service on a new transit route. “This is a good example of how the province partners with municipalities to develop effective and practical infrastructure solutions for Albertans,” said Wayne Drysdale, MLA for Grande Prairie-Wapiti. “The new buses will provide more opportunities for Grande Prairie residents to use transit.” “The City of Grande Prairie is excited to receive this funding,” said Mayor Bill Given. “It really enables us to move forward with our transit master plan and expand transit service across the city.” Over the duration of the GreenTRIP program, $800 million in funding is available for transit projects in the Capital region; $800 million for the Calgary region; and $400 million for other Alberta municipalities. The Alberta government is working to build a better Alberta by fostering economic growth, strengthening our health and education systems, investing in infrastructure, supporting safe and strong communities and ensuring a clean and healthy environment.
RED DEER Community Development The CPA (Alberta)’s Red Deer Community Development Coordinator has been working with the village of Delburne for planned upgrades to their community arena. Modifications will be made to a wheelchair ramp leading up to a viewing platform in the enclosed lobby area. Work will also be done to construct an accessible raised platform for the arena bleachers that will allow persons with disabilities to have full view of the arena area as spectators. Plans are also in the works to erect a fully accessible playground. CPA (Alberta) also provided a universal and barrier-free design presentation for council members and building and county planners in Leduc County. The county is planning to make some accessibility changes to buildings, as well as sidewalks and other places throughout the community where accessibility might be an issue. Chair-Leaders and the Rick Hansen Relay in Red Deer On May 26, Red Deer held its Chair-Leaders event to raise awareness for persons with disabilities, and the everyday challenges that they may face. The deputy mayor, members of the community, Red Deer Transit, other community agencies, and DJs from three local radio stations were some of the participants. The event wrapped up that afternoon at the CPA
(Alberta) office with a barbecue held for all of the participants, with the food kindly donated by Sobeys. Although the weather was not great for the event, participants still came through with smiles, and a better understanding of accessibility and the challenges faced by people with disabilities in Red Deer and surrounding communities. CPA (Alberta)’s Red Deer office is in the process of starting up a committee for the Rick Hansen Relay across Canada event. Once the committee has been formed, work will begin on planning the event which will be coming through Red Deer on March 2 and 3, 2012.
A nation-wide survey to confirm the critical needs of Canadians with spinal cord injury (SCI) has begun. Take the survey today! The SPINAL CORD INJURY COMMUNITY SURVEY is the biggest study of its kind to ever be done in Canada. You, more than anyone, understand your needs and can provide valuable insight into how well the Canadian health care and social services system are meeting them. HOW IT WILL MAKE A DIFFERENCE: Once completed, the survey results have the potential to provide SCI advocates, as well as service providers and government, with the evidence they need to address the most pressing issues for people with SCI. HOW TO GET INVOLVED: There are two easy ways to participate - online or by telephone. Your participation in the survey will be condential and anonymous, and you will be compensated with a $25 gift card for your time. WHO IS CONDUCTING THE SURVEY: This survey will be conducted by a professional research rm under the supervision of a team of Canadian researchers led by Dr. Luc Noreau of Université Laval. The survey has been approved by an ethics committee, and is funded by the Rick Hansen Institute.
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service in our library
A Walking Inspiration W
by Marilyn Erho
hen 24-year-old Francesco Clark took a nocturnal dive into the shallow end of a pool and felt the full impact of his chin on the bottom, he knew immediately that something was very wrong. Paralyzed from the neck down, doctors told him that he’d never move from his bed or breathe without a ventilator. Defying their predictions, within days he was breathing unaided — the start of his miraculous recovery process. Walking Papers: The Accident that Changed My Life, and the Business that Got Me Back on My Feet is Francesco’s inspiring story, celebrating courage and the extraordinary strength of the human spirit as he moved past “Why did this happen to me?” and found new meaning in life. Seven years after his life-changing accident, Francesco runs his own company, continues to work on his own recovery, and gives back by serving as a national ambassador for the Christopher and Dana Reeve Foundation, offering hope for others who have spinal cord injuries.
INSTANBUL BY ELECTRIC CHAIR by Dan Palamarek
n August of 2011, my wife, Laurie, and I travelled to Istanbul for a week. We flew via WestJet to Toronto, overnighted at the Sheraton Airport Hotel, and flew on to Istanbul the following day on AirTransat. That is an excellent use of time, as a 3.5 hour flight to Toronto, followed immediately by a 10 hour flight to Istanbul, could be difficult. Both airlines were attentive to our suggestions on how best to load the chair, although West Jet did remove the dry cell batteries out of the wheelchair on the first flight. The batteries are selfcontained and went back into their housing without problem. In Istanbul, Air Transat wasn’t provided a gate, so the ground crew brought the food delivery truck to the front of the plane. I was lifted into the aisle chair, and wheeled on the truck platform. Another disabled traveller, our spouses, and my electric chair were all driven to the visa and passport section of Istanbul’s International Terminal. The Turkish ground crew were polite, patient, and knowledgeable. Once inside the terminal, we were ably assisted to obtain a visa, at the cost of $60 US; and clear passport and customs, without any difficulty. Laurie and I try to utilize public transport as much as possible, so we got directions to the Metro and hopped aboard. The Istanbul Airport is probably the most modern I’ve seen, and the signage in English was adequate to find the Metro. The Metro had good signage as to the station stops, and also clearly indicated those which were accessible. We travelled to an interchange and boarded the Istanbul Tramway System, which is a light rail system that is able to travel in the narrower streets of the older parts of the city. The Tram had plenty of room for the wheelchair, and good signage on stops and accessibility. We rode to Sultanahmet, the oldest section of the city, looking for the accessible hotel which we had booked on-line through their advertisements. The hotel did indeed have an elevator, however there were no curb cuts in that old section, and there were several stairs from the sidewalk to the hotel lobby. Undaunted,
we asked for help to find a substitute, and a local gentleman escorted us about, until we located an accessible Holiday Inn back along the Tramway. The original hotel had no difficulty releasing the on-line reservation, and we called our booking agent to stop payment. Istanbul is a fascinating city, that has been in the centre of civilizations for millennia. Around 330 AD, Roman Emperor Constantine decided to make the second capital of the Holy Roman Empire at Byzantium, naming it Constantinople. For the next thousand years it was the eastern seat of the Roman Empire. In 1453, Ottoman Sultan Mehmed II lay siege to the city, and defeated the army commanded by Emperor Constantine XI. Since that time, the city has remained Turkish. It became known as Istanbul, but only officially in 1930. The Islamic religion is practised in the community, with its respect of prayer. The north half of Istanbul is in Europe, the south half is in Asia. Separating the two halves is the Bosphorus Strait, which connects the Sea of Marmara to the Black Sea. There are mosques, palaces, bazaars, and museums to see, and most are accessible. The local people were always quick to lend a helpful hand when accessibility became a issue. We took a boat to the Prince’s Islands one day, and then to the Asian side of Istanbul the next day. The gang planks for getting on and off the boats can be adjusted for a relatively smooth transition. Enjoyable walks are to be had along the bustling port areas, and across the Galata Bridge that overlooks the harbour. The Metro and Tram were free for me. The food was fresh, healthy, and delicious. We were asked not to drink the tap water, but bottled water was inexpensive (1 Turkish lire for a 1.5 litre bottle - a lire is about 2/3 of a Canadian dollar). The people were polite and respectful, and able bargainers. Smoking is less than in North America. Istanbul is a modern hub of activity. Turkish is the main language. All in all a great vacation, with few situations that a smile or simple gesture could not fix. Spinal Columns
The International Centre for Responsible Tourism-Canada Puts
Accessibility on the Agenda
he 5th International Conference for Responsible Tourism in Destinations was held in Edmonton June 27th - 29th. The conference was co-chaired by Laura McGowan, Director, ICRT-Canada (International Centre for Responsible Tourism - Canada) and by Professor Harold Goodwin of ICRT - UK. There were 193 delegates from over 20 countries worldwide. The International Centre for Responsible Tourism has a global reputation as the leading post-graduate training and research centre developing and promoting the concept of Responsible Tourism. It was founded by Dr. Harold Goodwin in 2000 at the University of Kent in the UK. The first ICRT conference was held in Cape Town, South Africa in 2002. It was in Cape Town, where 280 delegates from over 20 countries got together to write the “Cape Town Declaration 2002”: Having the following characteristics, Responsible Tourism: • minimizes negative economic, environmental, and social impacts; • generates greater economic benefits for local people and enhances the well-being of host communities, improves working conditions and access to the industry; • involves local people in decisions that affect their lives and life chances; • makes positive contributions to the conservation of natural and cultural heritage, to the maintenance of the world’s diversity; • provides more enjoyable experiences for tourists through more meaningful connections with local people, and a greater understanding of local cultural, social and environmental issues; • provides access for physically challenged people; and • is culturally sensitive, engenders respect between tourists and hosts, and builds local pride and confidence. The next international meeting was in 2008 and they have been held annually since. Each year the delegates have built on the principles laid out in the Cape Town Declaration and the
findings of the following annual meetings. The 2011 Edmonton, Alberta conference marked the first year the subject of accessibility has been part of the agenda. Speakers were asked to come from a variety of areas within the tourism industry and advocacy individuals wanting to see improvements within the tourism industry. In the first session titled ‘Access for All’ the moderator, Linnie Tsi of Alberta Municipal Affairs introduced the following speakers. Sheila King: Australia for All Alliance, Craig Grimes: Experience Community CIC UK, Ross Watson: William Watson Lodge, Kananaskis Sheila spoke of a number of progressive tourist attractions in Australia where there is an acknowledged need to upgrade the facilities to accommodate all customers. Many have gone far beyond the regulations set out in local laws and beyond the United Nations Convention - Article 30, 5C, to ensure that persons with disabilities have access to sporting, recreational and tourism venues. She was quick to point out, however, that there is a lot still to be done to make the tourism industry in Australia more accessible for the disabled traveler. Craig is the director of Experience Community CIC in Leeds England. Craig started by letting all the delegates from the tourism industry know that “disabled travelers” do spend money. In the UK, they contribute $1.2 billion to the tourism industry. In the US, the disabled population contributes $127 billion to the economy each year, with $13.6 billion going to the tourism industry. He also pointed out that in the UK, wheelchair users make up 9% of the disabled population. If that is approximately the same percentage as in the US, $1.22 billion of the $13.6 billion going to the tourism industry would be from the individuals using wheelchairs. This is a number that the tourism people need to realize they can have a piece of if they want to. Craig briefly spoke on the “day adventures” put together for
travel his website, www.experiencecommunity.co.uk . Most of his talk was directed toward the William Watson Lodge in Kananaskis. Craig was a guest there for one night and quickly put together a video presentation to advertise the lodge, much like he would for one of the adventures on his website. The last speaker for this session was Ross Watson, who talked about the William Watson Lodge in Kananaskis. “William Watson Lodge was opened on September 22, 1981. The Lodge has proved to be the most successful facility for persons with disabilities within the Alberta Parks system. William Watson Lodge is operated by Alberta Tourism, Parks and Recreation, Parks Division and was financed by the Alberta Heritage Trust Fund. William Watson Lodge provides year-round accommodations for Albertans with disabilities and senior citizens 65 and over. It includes 22 accessible cottages, 13 full-service campsites, picnic sites, and 20 kilometres of accessible trails.” Ross spoke eloquently of the captivating beauty surrounding the lodge. He smiled as he told us of all the wonderful praise that every guest of the lodge gives him after a stay there. He has been the manager for a number of years and is pleased to be quickly booked solid for the summer months each year. It is a job he looks forward to each day. The panel was then available for questions from the other delegates. A number of questions were asked by people who work for tourist attractions (such as jungle safaris, white water rafting and polar bear excursions) who feel they just cannot cater to the disabled population. After further discussion, some realized they might be able to offer services to individuals with some disabilities, but not all. That would be great as long as it is well communicated. A question was asked by an owner of a tour group from overseas, wanting to know of a place that is easily accessible for anyone. A local delegate commented, “If you wanted to view a venue that was accessible to all, including very wheelchair friendly, then go to Las Vegas. They figured out a long time ago who had the money: the disabled and aging population and they catered to them.” Toward the end of the day, we broke into groups to discuss and make recommendations to make tourism more responsible in five areas of current concern for the Alberta Declaration: 1. Access for All 2. Polar Tourism 3. Indigenous Tourism 4. Tourism & Local Economic Development in a Developed Country 5. Governance There was a lively discussion in the Access for All meeting, with a list that was growing rapidly. Under the guidance of Craig Grimes, who has been through this process with the ICRT before, the list had to kept to five or six points only. Due to the fact that this would be the first time any published documentation would be made to the tourism industry on behalf of the disabled population, it was felt this would be a starting point for the future. At the end of the conference, Professor Harold Goodwin and Laura McGowan thanked all the delegates for attending the
event and presented the Alberta Declaration 2011. For the first time at the International Conferences on Responsible Tourism in Destinations, there was discussion about accessibility. a) Recognition that previous declarations on responsible tourism have not encompassed the diversity of people with different disabilities. b) Demand that tourism providers place priority on ensuring access is available to everyone. c) Providers must be clear and concise in providing information about what facilities are available to people with disabilities in a variety of formats, to ensure that they are accessible to all. d) Acknowledge that governments must sign, ratify and implement the UN Convention and Protocol on the Rights of Persons with Disabilities, to ensure that people with disabilities have better places to live and visit. e) Recognize that the inclusion of people with disabilities in tourism should be habitual, rather than by special arrangement; people with disabilities also have a responsibility to make clear their requirements. It was felt by all the ICRT delegates that the conference was well-attended and ended with very successful results. They were pleased with the discussions on all the issues of the conference as they related to the Alberta Declaration. Laura McGowan was especially pleased to finally have accessibility discussed and feels that this is only the start.
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William Watson Lodge reprinted courtesy of the May 2011 Alberta Canadian Citizens with Disabilities Action Notes newsletter.
his summer, many Albertans traveled to holiday destinations across the province, those with disabilities included. But finding accessible holiday accommodations is a persistent challenge, especially if one hopes to spend time in a wilderness setting. Fortunately, Alberta has an affordable solution. On the east side of Lower Lake, in Peter Lougheed Provincial Park, stands the William Watson Lodge, one of the Alberta’s most accessible holiday destinations. Built and maintained by the Alberta government, the William Watson Lodge opened its doors in September 1981, thanks to the effort of former premier Peter Lougheed and his wife Jeanne. Their vision was to create a facility where Albertans with disabilities could stay and enjoy the outdoors, for a reasonable price. Open year-round, the Lodge has 22 fully accessible units, to which clients bring their own food and bedding. There are also 13 fully serviced RV sites (open from the May long weekend until Thanksgiving), a playground, picnic sites, and 20 kilometres of wheelchair-accessible trails that wind through gorgeous pine forests with mountain views. The main lodge and the first four cabins were opened in 1981; more cabins were built in 1985 and opened to guests in 1986. Cabin reservations are based on a system that gives priority to people with disabilities who require a high degree of access-
ible accommodations, including those who are profoundly deaf, legally blind, or cognitively disabled. Second priority is given to people who are semi-mobile or medically fragile, and third priority is given to seniors. The lodge does fill up quickly, so people are asked to book well in advance of their intended stay. The facility is an on-going memorial to William “Bill” Watson (1904-1965) who devoted his adult years to changing the social climate for people with disabilities. Although his arms were paralyzed at birth, Watson’s mother encouraged him to be independent, and he learned to swim, skate, ski, and write using his mouth. The independence inspired Watson to continually challenge negative attitudes about people with disabilities. In 1920, Watson graduated from the University of Alberta with a law degree but was told he could not article because of his disability. Instead he decided to travel, conduct research, and lecture to change attitudes. Even after he was completely paralyzed 16 years prior to his death, Watson never gave up his fight to promote better understanding and opportunities for people with disabilities. For more information on William Watson Lodge visit tpr.alberta.ca/parks/kananaskis/facilities_wwlodge.asp or phone (403) 591-7372.
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