Spinal Columns: Summer/Fall 2013 Volume 28 Number 2

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Summer/Fall 2013 Volume 28 Number 2

DEPARTMENTS

COVER STORY

18 Home Care

4

Editorial

5

Letters to the Editor

6

In the News

9

Meet the Staff

On Your Behalf 10 CPA (Alberta) Advocacy 11 Are You Driving Legal or Illegal?

Sports 12 Power Hockey

Editor .................................. Betty MacIsaac Assistant Editor .................. Zachary Weeks Layout/Design ......................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: The Editor, Spinal Columns Canadian Paraplegic Association (Alberta) #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 (780) 424-6312 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.

Accessibility 22 Multi-Storey Buildings and Accessible Exits At a crossroads in Alberta.

FEATURE STORIES

14 The Road Less Travelled

Recognition 23 Chair-Leaders 24 Red Carpet Affair 2013 Health 26 Talking About Dying Won’t Kill You Opinion 28 From My Perspective Active Living 30 Outdoors Unbound Travel 32 Travelling With Delhi 34 New York on a Shoestring

One man’s journey into a career of caregiving.

Regional News 35 What’s New in Alberta

16 Life in the Fast Lane

Library 38 Eat Well, Live Well

Publications Mail Agreement #40011327 Return undeliverable Canadian addresses to: Canadian Paraplegic Association (Alberta) #305, 11010 - 101 Street Edmonton, AB T5H 4B9 E-Mail: edmonton@cpa-ab.org ISSN 1195-5767

Rob Parsons has always lived life in the fast lane.

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editorial Challenging times for those who already face greater barriers to community participation!

T

h i s past spr ing a nd summer have been a tumultuous time for persons with disabilities and the aging population who rely on the stability of government funded services.

Not only have the services provided by CPA (Alberta) been cut back, decreasing the amount of information, support and programming available across the province, but other system funding changes have impacted their access to homecare, which indirectly impacts their access to education and employment. There seems to be a growing trend related to lack of consultation with examples such as privatization of homecare and changes to disability transportation services.

I have enjoyed the friendship of many persons who experience physical limitations over the past 20 years and I have listened to their building frustrations on a wide range of issues. I feel like the commitment to inclusive communities and equitable opportunity is not receiving the attention it deserves. We all recognize that unusual economic challenges have prevailed this past year; we cannot however, stray from the goals of social and economic participation for all. This is an optimal time for the three levels of government to collectively work together to ensure that the voice of the disability and aging community is clearly heard. Barriers can result when system changes take place without consultation and participation by persons who are impacted by the changes. Recent funding decisions appear to be made on the basis of saving dollars in the short term without consideration of future repercussions. Research or best practice based rationale needs to be shared with consumers as to how decisions were made and include viable opportunities for feedback.

What can we do about this? Make every voice count – including your own.

CPA (Alberta) and other organizations representing persons with disabilities have a responsibility to speak out about the issues but, more importantly, individuals need to speak out about the impact they experience. We didn’t have the opportunity to inform and influence regarding some of the current changes but we can and must respond. You can: • Tell YOUR story of how the changes impact you to all who are competing in any upcoming elections.

• Utilize social media (Facebook, Twitter, blogging) as a platform to address your own particular situation and/or to provide transparent and constructive feedback.

• Contact your MLA and/or MP. Let them know that you were not consulted before changes were made, that you could have provided advice and that short term budget gains through service reduction will have long term consequences on your health and your ability to participate in education, employment and/or volunteer work.

• Share your story with CPA (Alberta) through our Facebook and Twitter (@CPAAlberta).

By collecting your stories, we can do a better job of informing and hopefully influencing future policy and program changes.

Teren Clarke Executive Director

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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/cpaalberta HEAD OFFICE #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 Telephone: (780) 424-6312 Fax: (780) 424-6313 E-mail: edmonton@cpa-ab.org Executive Director: Teren Clarke CALGARY OFFICE 5211 4 Street NE Calgary, AB T2K 6J5 Telephone: (403) 228-3001 Fax: (403) 229-4271 E-mail: calgary@cpa-ab.org RED DEER OFFICE #103, 4719 - 48th Avenue Red Deer, Alberta T4N 3T1 Telephone: (403) 341-5060 Fax: (403) 343-1630 E-mail: reddeer@cpa-ab.org GRANDE PRAIRIE OFFICE 10 Knowledge Way Grande Prairie, Alberta, T8W 2V9 Telephone: (780) 532-3305 Fax: (780) 539-3567 E-mail: grandeprairie@cpa-ab.org LETHBRIDGE OFFICE Telephone: (403) 327-7577 Fax: (403) 320-0269 E-mail: lethbridge@cpa-ab.org LlOYDMINSTER OFFICE E-mail: lloydminster@cpa-ab.org MEDICINE HAT OFFICE 26-419 3rd Street SE Medicine Hat, Alberta T1A 0G9 Telephone: (403) 504-4001 Fax: (403) 504-5172 E-mail: medicinehat@cpa-ab.org ST. PAUL OFFICE Box 653 St. Paul, AB T0A 3A0 Telephone: (780) 645-5116 Fax: (780) 645-5141 E-mail: stpaul@cpa-ab.org FORT McMURRAY Gregoire Park Centre 194 Grenfell Crescent Fort McMurray, AB T9H 2M6 Tel: (780) 743-0307 Fax: (780) 743-4563 E-mail: fortmcmurray@cpa-ab.org CPA (ALBERTA) BOARD OF DIRECTORS Ned Shillington, Chair Dale Williams, Past Chair Eleanor Sugarman, Vice Chair Raymond Royer, Treasurer Margaret Conquest Harvey J. DeCock Shamel Elsayed Kent Hehr, MLA Timothy Hill Ron Jewitt Paul Nemetchek Souheil Saab Mark Wilson

Mission Statement To empower persons with spinal cord injuries and other physical disabilities to achieve independence and full community participation.

inbox

LETTERS TO THE

EDITOR I, Scott Douglas, am a paraplegic due to a snowmobile accident in December of 2004. I remember the trauma I faced at the time of my wreck. I want to thank CPA for being there for me when I felt there was no hope left in my life.

As I remember all the thoughts going through my mind, I can still remember when Margaret Conquest came to visit with me and how much of an inspiration you were to me. Also, Doug Manderville, you were a big inspiration to me. After visiting with these dear folks and then getting acquainted with CPA, my life all of a sudden seemed very hopeful.

Thanks to CPA and all the dear people who came to tell me that life is still worth living and, you know, it sure is. I am a licensed auctioneer doing lots of auctions, which I love doing, but if it wasn’t for CPA this would have never happened.

Thank you CPA for all you do.

Scott Douglas

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inthenews

IN THE

NEWS

WEEKS APPOINTED TO ADVISORY BOARD

Congratulations to Zachar y Weeks, CPA (Alber ta) Community Development/Communications Coordinator on his recent appointment to the City of Edmonton Advisory Board on Services for Persons with Disabilities.

DATS CHANGES CANCELLATION RULES The Disabled Adult Transportation Service (DATS) announced it will be changing the amount of notice required to cancel a trip from 30 minutes to two hours or more (effective September 1, 2013). If you have any comments or concerns regarding this change, they can be forwarded to CPA (Alberta) at publications@cpa-ab.org or you can contact DATS directly at 780-496-4567 or dats@edmonton.ca.

KWADSQUAD KwadSquad, aka Morrie Ripley and Chandra Round, have been a busy team this summer! They not only completed the Great White North ½ Ironman Triathlon in Stony Plain in July, but also completed the full Edmonton Marathon in August, a 5 km fun run and a 12 km family ride as part of the Tour of Alberta festivities. The triathlon was the most gruelling as they battled wind, rain, and severe bike malfunctions, however still finished with a respectable time of just over 8 hours. They had a much better race for the Marathon, with nothing but great weather and a superb finishing time of only 4 hours and 30 minutes! In between races they are helping to spread the word about KwadSquad and their mission, to create awareness about the abilities of those with a disability, and break down the barriers for everyone to participate in endurance events. They have been featured on Global TV, CTV, Breakfast TV, CBC radio and the Spruce Grove Examiner. To find out more about KwadSquad, or find out how you can borrow the equipment to participate in a running or cycling event, visit www.kwadsquad.com or email outdoor@cpa-ab.org.

IN MEMORIAM Gregory Bulldog Pauline Marcoux Roy Olsen Robin Sutherland Albert Willier Michael Willier won the Edmonton Mayors Award for Self-Advocacy.

MAYORS AWARD FOR SELF ADVOCACY Long-time CPA (Alberta) member and peer mentor, Michael Willier, was presented with the Edmonton Mayors Award for Self Advocacy on May 22, 2013. The Award goes to a deserving citizen in the community who exemplifies leadership. Michael demonstrates self-advocacy by sharing his issues and needs in Edmonton. As a result of a spinal cord injury in 2007, Michael’s experiences serve as a springboard for discussion and advocacy opportunities. “A lot of disabled Aboriginals who live in isolated communities, may have to move to a city (following an injury).

It can be a big culture shock” he says. “My goal is to inspire people with disabilities to realize there are opportunities out there for them, as well as to advocate for themselves”. Michael emphasizes that being visible in the community allows people to understand the issues faced by persons with disabilities.

HONORARY DOCTOR OF LAWS Louise Miller, University of Alberta (U of A) alumna, worked as a registered nurse for 20 years and taught at the U of A for 32 years. She co-founded the Spinal Cord Injury Treatment Centre Society in Edmonton and served as a leader for numerous associations and foundations. In 2000, Miller was appointed as a member of the Order of Canada and most recently received an honorary doctor of laws from the U of A.

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meetthestaff

STAF STAFF PROFILES ROFILES

Meet the new Manager of Programs and Services in the Calgary office, Greg Kern. He brings a wealth of knowledge and experience to the position as a graduate of the University of Alberta (MBA), Lutheran Theological Seminary (MDiv), University of Victoria (BA, Psychology and Sociology) as well as 16 years of service in the Evangelical Lutheran Church in Canada.

Excited about this new challenge and learning opportunity to be part of a team that reaches out to people with spinal cord injuries (SCI) and other physical disabilities, Greg plans to: • Affirm, value and respect all staff, clients, families, volunteers, business leaders, health care providers, donors, sponsors, granting agencies, foundations, related

not for profit agencies and local political representatives; • Communicate to all stakeholders the importance of focusing on the needs of people with SCI, their families and the communities where they live; • Build a culture of fun, resiliency and trust with the Calgary team so that both staff and clients are able to reach their potential and rebuild their dreams; • Learn from courageous staff engaged in helping people through client services, peer support, community development, special events, multi-media, aboriginal services, community access and the CPA (Alberta) SCI Fitness and Wellness Centre in Calgary; and • Personally change through greater insights into the lives of people with SCI and other disabilities. As a first time participant in the Chair-Leader’s Enabling Access event in Calgary on May 3rd, Greg says “I discovered, once again, the fear of vulnerability. Why are we so uptight with our weaknesses and fragility? I’ve re-discovered that all people, regardless of trauma and mobility issues, have important gifts and skills to offer others! After a day of wheeling around with a sore left cheek (not the one on my face), I have a better understanding of why CPA (Alberta) promotes elimination of barriers!”

Greg also has a diverse sporting background, playing Junior A hockey with the Calgary Canucks (1981) and soccer with the Canadian World Cup and Olympic teams (1984-88). He is the proud father of 8 year old twins (Marcus and Sophie) and a 6 year old (Mateo) and also volunteers in Calgary as hockey and soccer coach.

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onyourbehalf

ARE YOU DRIVING

LEGAL OR ILLEGAL ILLEGAL? ?

by Marilyn Erho

A

fter a change in your medical or physical condition, there are often many questions, particularly regarding driving. Will I ever drive again? Is my license still valid? What do I need to do to get a valid drivers license? Here are a few questions and answers that may be helpful.

WHEN DOES MY LICENSE EXPIRE? Licenses are renewed at different times. As soon as there is a change in your physical or medical condition, you are required, by law, to update your license and report the change to Alberta Transportation’s Driver Fitness and Monitoring Branch.

All driver licenses require renewal every 5 years or sooner if Alberta Transportation has deemed that a persons’ capacity to drive safely is at risk of change and therefore the renewal may be required on an annual basis including a physician signed validation of driving capacity stability. This will be noted on your valid license.

WHO DO YOU CONTACT TO REPORT A CHANGE IN YOUR CONDITION? Individuals are required by law to report their change to: Driver Fitness and Monitoring Branch Alberta Transportation Main Floor, Twin Atria Building 4999 - 98 Avenue, Edmonton, AB T6B 2X3 Tel (780) 427-8230 Fax (780) 422-6612 driver.fitness@gov.ab.ca

WHAT HAPPENS IF YOU DO NOT REPORT? Individuals who choose not to report their physical or medical change place themselves and others at risk. If you are in an accident, your insurance may not cover you as your information is incorrect. Or, if you are pulled over, charges can be applied for driving with an incorrect license. If you experience a change in your physical or medical condition, you should report it to minimize the risk to yourself and others.

DO I NEED TO WRITE A LEARNER’S EXAM? If you had a valid license before a physical or medical change and you are within three years of your physical or medical change, you do not need to rewrite the learner’s exam.

If it has been more than three years since your physical or medical change, you will need to rewrite the learner’s exam.

If you have never had a valid driver’s license, you need to complete the learner’s exam and go through the one year probation period before a Driver’s Exam can be completed.

ARE THERE ACCESSIBLE VEHICLES TO COMPLETE YOUR DRIVER’S LICENSE? Yes. Calgary and Edmonton both have vehicles that are available, depending on your ability to transfer to a vehicle. Calgary has a car that comes complete with hand controls; but you need to be able to transfer into the driver’s seat independently (may use a transfer board).

In Edmonton, the Glenrose Rehabilitation Hospital has a Driver Evaluation and Training Service. They have two accessible vehicles for training purposes: a fully accessible van with hand controls, ramp, tie down system so you can drive from your wheelchair; and a car, complete with hand controls . You do need to be able to transfer independently into the car (may use a transfer board). They can be reached at 780-735-7946.

IS FUNDING AVAILABLE? Funding is available if all other funding options have been exhausted and if the driver training is completed in Calgary.

For more information on funding options and to see if you will qualify, call Marilyn Erho at 403-228-7434.

WHO CAN HELP ME? There are people who can help you with the driver training process and to make it as smooth as possible. For more information or to help you get safely back on the road, contact Marilyn Erho at 403-228-7434 or marilyn.erho@cpa-ab.org.

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sports

POWER

Hockey

by Kevin Lawson

D

o you love hockey? Do you use a power wheelchair?

Do you dream of scoring the winning goal in the big game? Then the exciting sport of Power Hockey is perfect for you.

What is Power Hockey you ask? Quite simply, it is the game of ball hockey adapted so that it can be played by people who use power wheelchairs.

If you use a power wheelchair or know someone who does, you will recognize that it greatly limits recreational choices – there just are not many sports opportunities available. The Calgary goal in the Power Hockey L eague (CPHL) is an inclusive sports league for anyone over 12 years old using a power chair in their daily life (includes men and women from a wide age range, from teenagers to players over 50 years old.) Over the 30 year span the league has operated in Calgary, it has featured a wide range of players. From

those with quick reflexes and good upper body strength to those who use chin controls and have no arm movement, all levels can not only play the sport, but thrive! The CPHL is not only a competitive sport but is also great at creating a social network for individuals with disabilities. It gives members the experience of a team sport (camaraderie, teamwork, sportsmanship) that well known sports leagues provide for their members.

The CPHL can changes lives for the better; it provides people who use power wheelchairs with the opportunity to become legitimate athletes. Being able to play a competitive sport, with statistics, awards, referees, coaches, national and international tournaments and more is something many power wheelchair users may think is only a dream. The CPHL makes this dream a reality.

For more information, go to www.powerhockey.ca.

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feature

The Road Less Travelled: ONE MAN’S JOURNEY INTO CAREGIVING

by Heather Lissel

Creative Commons photo courtesy of Jason Corneveaux.

L

ife is rarely a straight path from A to Z. The unexpected happens. We make choices that alter our course.

Along the way we find ourselves asking “How did I end up here?”

One of the biggest choices we make in our lives concerns our career. For Rodel Rayataza, being a personal care attendant (also called a “caregiver”) was an option he didn’t initially consider but one that he’s found very rewarding and has helped his family back home to live a better life. His experiences are inspiring and a good example of how taking the road less travelled can lead to success and fulfillment.

Born in the Philippines, Rodel completed school and went on complete his degree in agricultural engineering. Like many students, he didn’t find work right away in his field, so he worked in the fast food industry. He excelled in his job, working his way up to a management position in Saudi Arabia, and then a franchisor back in the Philippines.

In between, Rodel was involved in a vehicle collision and sustained an L3 spinal cord injury that left him paralyzed from the waist down. “I did my own therapy,” says Rodel. “I was in good physical shape and that helped me to recover.” Good fortune combined with hard work paid off for Rodel. In three months he was able to return to work. But the injury had changed him.

“I decided to take caregiver training,” he says. Caregiving is a popular option for many Filipinos, both men and women.

Like Rodel, many take jobs outside their country, working as caregivers for the elderly and persons with disabilities. Rodel completed the course and spent the next eleven years working in Israel with a variety of clients, the majority of whom were former soldiers with severe brain and spinal cord injuries. “It was rewarding to see their development every day,” says Rodel.

That sense of accomplishment and contribution led him to decide that caregiving was the job he was meant to do.

It was a very difficult decision as it meant he would be away from his family. Already he had spent more than 11 years away from them while in Saudi Arabia and Israel. But he was determined to give them a better life. “I just send them their monthly

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allowances,” he says. “Being away from them is the pain that I am battling every day. I avoid putting their pictures in my room because it just escalates the burden that I feel inside. We just communicate through Skype and SMS. I missed a lot of family occasions like birthdays, anniversaries, graduations, school events, etc. But because of my determination to give them a better life, I chose to follow this path.”

In April, 2011 Rodel moved to Canada where he continued his caregiving work. He now works with Zachary Weeks, Communications Coordinator at the Canadian Paraplegic Association (Alberta). They have a great personal and working relationship which is good, considering the amount of time they spend together.

When asked about the relative advantages and disadvantages of having a male caregiver over a female caregiver, Zach states that it can be easier for men to relate to one another. “You become friends,” he says. “While a female caregiver might be more subtle and more in tune with your emotions, with a man you can share ‘guy talk.’ Men are usually more forward and direct.” Rodel comments that a man’s physical strength is also an advantage when it comes to providing care.

Rodel is quick to note, however, that it isn’t his strength or the fact that he’s a man that makes him a good caregiver. “My philosophy is to help you by not helping you. If there’s something Zach wants me to do and I think he can do it himself, I tell him to try. I worked with a brain injured man in Gaza – a former tactical engineer and sniper who was shot in the forehead. He was angry and wanted to die. He rejected food. He would try to hit me. I turned it into a positive. I said ‘good, your arm is moving.

Now try to kick me and make your legs move this time.” After two years, the former soldier was able to move his arms and could get around in a manual wheelchair.

Not everyone could be as dedicated to his profession as Rodel. He puts in long hours, works weekends and nights, and sometimes needs to cut his personal time short to help Zach out.

But those are the sacrifices that many who work in the healthcare industry make. Rodel sees his choice to pursue caregiving

feature ARE YOU CUT OUT FOR CAREGIVING? 1. I experience great satisfaction from helping others.

2. My friends and family would say that I am a patient and compassionate person.

3. I am a good listener.

4. I have enjoyable memories of time spent with seniors and people with disabilities.

5. I am dependable and rarely late for appointments.

Questions adapted from www.homeinstead.ca.

2 Rodel and Zachary at Zachary’s wedding. as a stepping stone. He’d like his next move to be into physiotherapy. His job experience and his philosophy toward care will definitely be assets to him. He also holds onto the hope of one day bringing his wife and two young children here where they can finally live as a family.

Summing up his thoughts about being a caregiver, Rodel says “it takes patience, patience, patience, patience.” He would recommend the job to others, adding that he’s glad to talk to anyone who is thinking about becoming a personal care attendant caregiver. He can be reached through Zachary Weeks at the CPA (Alberta) office, 780-424-6312 or zachary.weeks@cpa-ab.org.

OTHER POINTS: • The going rate for a trained health care aide is between $15.00 and $23.00 per hour (source: WAGEinfo Alberta Wage and Salary Survey).

• Rates for untrained, privately hired caregivers start at $10.00 per hour.

• There are many agencies that will hire trained caregivers or train their own. You can find them by googling “home care agencies [your town]”.

• Individuals looking to hire their own caregivers (not through an agency) list their needs on various websites. Just google “caregiver jobs [your town]”.

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feature

LIFE IN THE

FAST LANE

by Christina Scott

R

ob Parsons has always enjoyed taking risks, from anically inclined,” says Parsons. “Once I started working on BMX biking in his teens to racing cars as a young cars it all just came naturally. Being able to weld and do stuff adult. Whether on the trail or the track, it seemed with any type of metal was essential for building cars and the there was no challenge too big to conquer. Even after kind of cars I wanted to build.” sustaining a severe spinal cord injury just a few short years ago, What Parsons had in mind wasn’t your average vehicle. In the 26 year old is more focused than ever, determined not to let 2005, a friend introduced him to drifting, a special type of raanything stop him from enjoying life in the fast lane. cing that involves a uniquely built car. Parsons wanted to build Parsons grew up in Lethbridge and became interested in his own. extreme sports at a young age.

With this goal in mind, the following year, he returned to “I was definitely an outgoing kid” he says. “I was always into school to pursue certification as a journeyman welder. He graduriding pedal and BMX bikes. I just rode bikes all day.” ated from Lethbridge College in 2010.

During his time at Allan Watson School, local cycling comDrifting involves two cars driving around a set course; one panies caught wind of Parsons’ talent and passion for the sport, driver acts as a lead car while the other assumes the role of the eventually agreeing to sponsor him when he rode competitively. chase car. The opponents will drive around the course, going “They would pay me in sponsorship sideways and creating as much smoke of parts and products that they manuWe did a demo inside as possible. The chase car attempts to factured (like) bike frames, pedals and put pressure on the lead car by following of B.C. Place, so that closely behind in an attempt to throw tires,” he says. “They helped me out was fun; I felt like a with deals to keep my bike together.” the lead car off and gain the advantage After high school, however, Parto win the race. Parsons says the sport rock star that day. sons’ interests changed. Following is more a showcase of skill as opposed graduation, he found a job in the construction industry; during to speed. He began drifting by participating in a series of practhis time, Parsons also began working with his father to bring tice events in Edmonton. in and repair imported cars from Japan as a way to make extra “Once his series started to get some traction, it started to money. become pretty popular around (southern Alberta),” he says.

“That was when you could bring over cars from Japan that “Bigger name sponsors would sponsor the event (and) give out had a good body style,” he says. “So I started bringing in a bunch cash prizes.” of these cars with my dad, and that’s where I started tinkering After this, Parsons began attending events in Red Deer and with them.”

Calgary.

He says the project eventually turned into a passion, fueling “I would go to the Calgary practices every second weekend a desire to work with his hands. and I would drive at all the events,” he says. “I enjoyed every“I just got a passion for working on them because I’m mechthing about it: the preparation, the driving, the places I got to

“

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”

feature go and people I would meet.”

Parsons says one of the highlights of his racing career so far occurred in Vancouver at Monster Jam. “We did a demo inside of B.C. Place, so that was fun; I felt like a pretty big rock star that day,” he says. “(There were) 60,000 people (there), so it was big.”

During Parsons’ first three years racing, he consistently placed first or third, only missing the podium once.

“That was a highlight I felt really good about,” he says.

Parsons says if there is anything scary about the sport, it’s the anticipation leading up to the event.

“I’d say the scariest part for me would be waiting to go drive,” he says. “I felt very comfortable doing it and quite honestly, the cars are way safer than any motorbike out there.”

The cars used are manufactured vehicles which are stripped down and converted to race cars. The vehicles must originally be street cars to be eligible in these competitions. Parsons says building a car for this purpose involves a lot of work. After the car is completely stripped of virtually everything but the frame, it is rebuilt to include elements like fibreglass panels and a new front end. The motor must be rebuilt, the wiring replaced and the vehicle needs to be repainted.

Parsons has been working on his current car for six months.

“There is no real way to put a time frame on building a race car because you are always improving it” he says.

This car is different than anything he has ever driven in the past. Once completed, the car will be completely functional via hand controls.

In June 2011, a dirt bike accident rendered Parsons a paraplegic. He sustained a T9 spinal cord injury when he lost control of the bike and landed stiff-legged on the ground.

“I broke my back, legs, tibias, fibulas, femurs; I punctured a lung and broke a bunch of ribs,” he recalls. “It was pretty bad.”

Parsons was airlifted via STARS Air Ambulance to Foothills Hospital in Calgary. There, he spent six months recovering. Parsons says although the incident affected him physically; mentally, he was unfazed. “(Considering) the things I did for fun, I knew there was risk in anything I did” he says. “If anything happened, I accepted it. It really wasn’t an issue for me. It was more just, ‘How can I recover quickly and get back to doing what I do?’”

He adds recovery was simply about letting his body heal.

Even after being released from the hospital, he says life remained fairly normal.

“Mostly, I had to figure out how to do stuff differently,” he says. “There wasn’t much transition other than working out and staying as active as I could. Absolutely nothing changed for me, other than the fact that I have to crawl up or down the stairs.”

Parsons’ goals haven’t changed either. He began thinking of ways to get back on the track while still in the hospital. He knew he wanted to build a hand-controlled race car, and spent a lot of time wondering how to make his dream come to life.

“It was a lot of sleepless nights,” he notes. “I’ve gone through many different ways of doing it.”

Parsons took inspiration partially from a driver in Japan who built a similar vehicle while implementing his own ideas as well.

“I only have two limbs that work now so I need to be able to

Rob working on a race car in his garage. He hopes to have it completed this May. Rob is also a journeyman welder.

control the steering wheel, gas, clutch, shifting and e-brake all with one appendage,” he says. “I will have to control the steering wheel with one arm and everything else with the other.”

Parsons began building the car after being out of the hospital for approximately eight months; “I thought that there was a lack of someone trying in this type of field that’s been in my situation,” he says. “I would like to start up a club for people that are in my situation to get back into a car like that again and drive around a track on their own.”

Parsons also says he would like to continue racing while possibly making a career out of building cars. Another important goal for Parsons is to raise awareness about STARS Air Ambulance. Since his accident, Parsons has been a spokesperson for the organization, giving talks at local events in Lethbridge.

“I give STARS huge credit for saving my life,” he says. “Without them, I wouldn’t be here today.”

Spinal Columns

17

feature

HOME CARE

At a Crossroads in Alberta

by Teren Clarke

A

s a home grown Albertan, a former Registered Nurse and a 20 year participant in the delivery of community based services to persons with disabilities and persons with other progressive or

chronic illnesses, I feel compelled to weigh in on the changes taking place in Alberta, specifically around home care services, a division of Alberta Health Services (AHS). It would seem that home care services are moving in a direction that is contrary to federal policy, provincial policy, an abundance of literature on best practices in the Canadian context, and the grass roots wisdom of disability organizations like the Canadian Paraplegic

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Association (Alberta).

A leading authority is the Canadian Home Care Association (CHCA). Their mission is to speak with a national voice, promote excellence in home care through leadership, awareness and knowledge to shape strategic directions. Their vision for home care is an accessible, responsive home care and community supports which enable people to stay in their homes with safety, dignity and quality of life. On behalf of a membership of 200 home care organizations across Canada, the CHCA is guided by three key principles: 1. A national framework for home care that suppor ts accessible, quality ser vices that are publicly administrated and responsive to local community needs.

2. Home c a re is a cr it ic a l component of an integrated system through the prov ision of col laborat ive a nd interdisciplinary care.

3. Family caregivers and volunteers are vital and respected members of the home care team and should be provided with necessary supports.

Home care has long been described as an essential element of an integrated, client-centered hea lt h ca re system.

In Canada, the home care sector has experienced enormous growth over the past 40 years. The CHCA reports that one million Canadians receive publicly funded home care services annually which reflect a doubling of individuals served over the past 15 years. They estimate that another 500,000 individuals are accessing home care services not funded by government.

The CHCA predicts that strategies to protect health and wellness will need to change significantly over the next decade related to our aging population and the need for delivery of care to reflect where individuals have the greatest recurring interaction with the healthcare system - in their communities through visits to their family doctor and management of their health condition in their homes and communities. However, Alberta is particularly posed to experience great stress on the system related to some unique

features of our province related to the economy, the provincial deficit, the geographic spread between our vibrant cities, changing rural demographics and changing weather patterns leading to fires and floods in recent years.

My observation of home care services in Alberta over 30 years is that services have evolved respecting principles described by the CHCA. Alberta was the first province in Canada to implement the self-managed and family managed care options for home care services more than 20 years ago. A case management approach was adopted by home care managers (also recognized as a best practice through research conducted in other provinces) whereby needs were identified through collaboration between the individual/family and the home care manager. This option has been recognized as a best practice and adopted in other provinces. However recent drastic changes have been made; AHS has moved from contracting with approximately 200 home care companies across the province to approximately 40 large companies. AHS has reported that this strategy will reduce home care costs because of the reduction in bureaucratic process to manage contracts and will not impact service level or quality. That is not the experience however of many of our members who are frustrated with the absence of consultation, the disruption to their lives resulting from the change process, and a building fear for their safety and ability to remain in their homes and community. Individuals who rely on home care have reported concerns to us in relation to the following areas: 1. Their annual home care plans/contracts are being reviewed with the intention to reduce the scope of service previously available to them (fewer hours of care = reduced expenditures).

2. Persons who have been living independently utilizing the self-care option are also having their funding decreased based on an AHS directive and not an assessment of need.

3. Access to the self-managed care option has been frozen for individuals who desire the flexibility and control over their care priorities and scheduling of care. This effectively inhibits those individuals from pursuing goals related to participation in education and meaningful employment because the scheduling for direct service is contingent on the convenience of the home care agency and not the needs of the client.

4. The elimination of 75% of formerly contracted agencies has resulted in a change of staff for the majority of recipients/clients of home care services.

Any change to home care staff requires a lot of effort on the part of the recipient of the service, related to building new relationships and communicating effectively with the new staff member. In reality, each home care client provides some level of training to each new caregiver who enters their home. In some cases, new/changed staff may demonstrate less commitment for showing up on time, or at all.

As a result, one may question what consequence is in place for these individuals tasked to ensure you are taken care of, possibly leaving the home care client vulnerable in terms of their health and safety, not to mention their ability to actively

8

participate in everyday life, including school or work. Continued reduction in the reliability of care is unacceptable. Many home care clients fear they will lose their ability to stay employed and/or be active in their communities due to drastic changes that were imposed without adequate consultation or consideration; changes that could impact long term users who rely on home care to stay healthy at home.

CPA (Alberta) is hearing the above complaints loud and clear on a daily basis. An excellent example can be found in a piece titled “When Bureaucracy and Policy Leave Ethics Behind: Our Nineteen-Day Battle with Alberta Health Services to Save Our (Independent) Lives” recently published by the Canadian Disability Studies Association. So I have to wonder why Alberta Health Services (AHS) has implemented such a change when an evolved and successful system of home care worked well from the perspective of clients and front line home care staff.

The previous delivery mechanisms evolved over many years of consultation, piloted trials and the identification of evidence based best practice which abided by the principles set forth by the CHCA. It would appear that decisions were made based on the criteria of budget reduction for the short term without consideration for the long term rebound impact on utilization of hospital based services. Alberta Home Care budgets are shrinking on a per capita basis despite the fastest growing population base in Canada.

A Government of Alberta task force was struck in the early 2000’s to look at the workforce necessary to provide the full range of health services needed in our growing province.

Several strategies were identified in a report entitled “Workforce 2010” to increase the desirability and stability of working in a caregiving profession. The elimination of 60% of the contracted agencies who provided home care and home support does not align with any of the strategies and has left many former caregivers without a job and several community based agencies across the province will close their doors. Those who seek reemployment with a remaining contracted agency will likely be paid less for their work, likely leaving them dissatisfied and seeking other work outside the caregiving sector as soon as possible.

The delivery of home care is one component of the portfolio managed by AHS which is governed by policies set forth by the Ministry of Health (formerly Health and Wellness) which has the oversight to set policy and direction to lead, achieve and sustain a responsive, integrated and accountable health system.

There appears to be a disconnect between policy direction at the Ministry level and implementation at the corporate level of AHS. Albertans deserve a home care service that is integral to enhancing the health and wellbeing of citizens, particularly those whose health is at greater risk of compromise. That is not the recent experience of many citizens!

CPA (Alberta) will be pursuing the concerns brought forward by our members with the Minister of Health and other members of the Legislative Assembly. We will report back via Facebook, Twitter and our next issue of Spinal Columns.

HOME CARE FEEDBACK BLOG To share your experience go to www.homecarefeedback.wordpress.com Spinal Columns

19

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21

accessibility

MULTI-STOREY BUILDINGS &

ACCESSIBLE EXITS

independent egress from a multi-storey building for persons in wheelchairs.

by Ron Wickman

I

remember watching, like so many others around the world, the morning news on September 11, 2001. In horror, I witnessed two planes crash into two towers of the World Trade Center. In amazement, I also watched both towers collapse. Even as an architect, I could not believe my eyes; I did not think this was possible.

Since that time, I have had numerous conversations with people about how this disaster happened and what could be done in the future construction of multi-storey buildings. Of course, as an architect who specializes in barrier-free design, my mind immediately focused on how persons in wheelchairs could have escaped from the twin towers. I did read about a quadriplegic who, with the help of many others, made it down the stairs and escaped the building before it collapsed. That being said, it is safe to say that persons with disabilities are especially vulnerable in multi-storey buildings when an emergency occurs.

I have researched ideas to make multi-storey structures safer for persons with disabilities. There are numerous thoughts that either: 1.

Enhance existing codes and construction methods.

2.

Think outside the box.

Most of the Building Code changes are being proposed in the United States. The new codes address areas such as increasing structural resistance to building collapse from fire and other incidents; requiring a third exit stairway for tall buildings; increasing the width of all stairways by 50 percent in new high rises; strengthening criteria for the bonding, proper installation and inspection of sprayed fire-resistive materials (commonly known as “fireproofing”); improving the reliability of active fire protection systems (such as automatic sprinklers); requiring a new class of robust elevators for access by emergency responders in lieu of an additional stairway; making exit path markings more prevalent and more visible; and ensuring effective coverage throughout a building for emergency responder radio communications.

The two concepts that seem to be strongest in Canada are protected elevators reserved for firemen’s use to bring up the fire equipment and to help persons with disabilities; and refuge floors that house protected areas, including oversized landings in stairwells, for occupants with disabilities to await rescue.

In the second concept, trained personnel who work on each floor can assess the emergency and can broadcast a variety of specific messages to occupants with disabilities. A final concept that has proved to be not that positive is an evacuation chair.

This idea would have the trained personnel transfer a person in a wheelchair into a device that could, with help of course, negotiate the stairs. In an emergency, this transfer makes for a stressful situation for all involved.

Following the collapse of the World Trade Center buildings, current occupants of tall buildings are reluctant to delay egress and are not comfortable with the long egress times. This is especially true for persons with disabilities. The key is to provide

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Spinal Columns

An out of the box design concept for multi-storey buildings and emergency egress for persons in wheelchairs, is to use a ramp. A number of years ago I was given a photograph by Diane Earle, a former employee of the CPA and paralympian.

This image shows a housing project constructed for Olympians and Paralympians of the Seoul, South Korea Olympics. The emergency egress is a series of ramps getting from the top of the multi-storey building right to the bottom. The cost of all persons, including those with disabilities, safely getting out of a building is priceless.

Recently, I was on a family vacation in the Outer Banks of North Carolina. On a shopping day we visited a three storey building that I noticed had no elevator. Rather, on the side of the building was a series of ramps leading from the ground, up to the third level. Unfortunately, all the doors of the third level shops had 3” thresholds. We must remember to get all the details right.

The concept of the combination of multiple safety features in multi-storey buildings seems to be the best fit. It would be great if persons with disabilities have the choice to use an elevator or a series of ramps to egress a multi-storey building in the case of emergency. The ultimate result would be that everyone, with or without disabilities, would benefit.

Spinal Columns

23

Ed and Marie Stelmach, Honourary Patrons of the Red Carpet Affair, present the Christopher Reeve Award to Mark Zupan

MLA Kent Hehr is presented with the Shining Star Award by Judy and Laurie Hawn, Honourary Patrons.

by Angie Barron

I

n spite of cold weather, lots of snow and competition for pa rk ing, the 2013 Red Ca r pet A ffa ir held on March 15 was another success. With “Celebrating Possibilities” as the theme, the 10th anniversary of the Red Carpet Affair was a celebration to remember.

A crowd of over 400 made their way to the new Red Ca r pet A ffa i r venue i n t he A lber t a Ba l l room at t he Edmonton Expo Centre to raise awareness and celebrate the accomplishments of some special guests.

Ho no u r e e s fo r t h e e v e n i ng i nc lu d e d M a r g a r e t C o n q u e s t , r e c ip ie n t of t h e Ho no u r a ble L o i s Hole Community Development Awa rd, for her dedication to making significant long term contributions to the lives of people w ith disabilities; Stephen Rumley accepted the Percy Wickman Accessibility Award on behalf of the Edmonton International Airport, for its advancements in accessibility; Donna Martyn recipient of the Dr. Gary McPherson Lifetime Achievement Award for her long-time, outstanding contribution to the cause of making Alberta a better place for all people with disabilities; and our newly introduced Shining Star Award which was presented to guest speaker MLA Kent Hehr by our Red Carpet Affair

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Spinal Columns

Honourary Patrons, Laurie and Judy Hawn. Hehr is a twoterm Member of the Leg islative Assembly for Calgar y Buffalo and quadriplegic as the result of a random act of violence when he was a young man. The Shining Star Award acknowledged Hehr’s work in raising awareness on a national level for individuals who live with spinal cord injuries and other physical disabilities.

Auctioneer Mark Scholz and emcee Josh Classen shone as our very popular stage personalities keeping the crowd laughing with their stories, antics and light bantering. The evening featured a variety of live and silent auction items, raffles, and great music by saxophone player Kevin Heikela with Shannon Shade on vocals.

Heartfelt thanks and appreciation went out to Pamela Bennett, long time member and Chair of the Red Carpet Affair Organizing Committee and Patrons Council.

CPA (Alberta) would also like to extend our gratitude to our gala sponsor James H. Brown and our many other sponsors, members, and supporters, without whom we would not have been able to enjoy this special evening - all in support of individuals with spinal cord injuries and other physical disabilities.

Photography by Designpics

recognition

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Shining Star Award MLA Kent Hehr receives award from Laurie and Judy Hawn, Honourary Patrons

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Percy Wickman Accessibility Award Edmonton International Airport Stephen Rumley accepts award on behalf of City of Edmonton from Ceira and Jayden Wickman

Gary McPherson Lifetime Achievement Award Donna Martyn receives award from Valerie & Keiko McPherson

Spinal Columns

25

health

TALKING ABOUT DYING

WON’T KILL YOU

by John Warren

The Winter 2013 issue of Spinal Columns presented an article entitled “Why I oppose legalization of assisted suicide and euthanasia” by Professor Emeritus, Dick Sobsey of Edmonton, Alberta.

In the following article, John Warren, Vice President of “Dying with Dignity” presents another view.

N

o, talking about death won’t kill you. What it may well do, though, is help you think things through clearly so that you are able to make an informed decision on what kind of death you will want when that time comes. Will you want to have the government decide that you must endure pain, discomfort and degradation until your body gives up? Under our present law, you have no choice and so this is the death you might have.

Or will you want to be able to choose a painless and peaceful end on your own terms? If Canada passes a new law to allow medically-assisted dying, this is the death you could choose.

Most Canadians want to be able to make that choice. Do you?

Public opinion polls over more than a decade consistently show that between 75% and 80% of Canadians support a change in our law to allow appropriately regulated medically-assisted dying for those who want that choice.

The disability community is understandably sharply divided on the issue. On one side, there are groups like the Coalition of People with Disabilities who support Physician Assisted dying.

On the other side are well publicized and well financed groups like Not Dead Yet who base their opposition on fear-mongering with scant regard for the facts.

Here is a well-informed disabled person’s opinion. Andrew Batavia, who died in 2003 at the age of 45, was a tireless advocate for the rights of persons with disabilities. An Attorney and Professor of Public Health at Florida International University, he helped write the landmark Americans with Disabilities Act (ADA). He was himself a high quadriplegic, as a result of a car crash at the age of 16, and used a motorized wheelchair with chin control for mobility.

He was an equally strong campaigner for the legalization of medically-assisted dying and wrote extensively on the subject, including the following comments in an essay for the book “Physician-Assisted Dying: The Case for Palliative Care and Patient Choice”.

1. The disability rights/independent living movement is based fundamentally on autonomy, and people with disabilities should be allowed to make all decisions that affect their lives – including the decision to end their lives, with or without assistance.

2. The disability rights movement has been successful in securing a broad array of rights on behalf of people with disabilities based in large part on recognition of these individuals’ autonomy. Among these are the rights of people with disabilities to live in their communities (rather than in impersonal institutions), to be free of involuntary sterilization, to raise children, to obtain a public education, to use

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Spinal Columns

public transportation and to have access to places of public accommodation. We believe that competent individuals with disabilities are capable of autonomy.

Consider your rights, right now: 1. You can take your own life. Attempted suicide is not an indictable offense.

2. You have the right to refuse treatment even if such refusal might bring about your death more quickly.

3. You have the right to discontinue treatment, even though this may cause your death. Ethically and legally, there is no distinction between discontinuing treatment and not having it in the first place.

4. You have the right to refuse food and drink, whether you are being fed orally or by tubes.

And now consider this: What’s the difference between eliminating treatment and dying as a result, or having help to die?

Practically and ethically it’s the same thing. We die!

In addition to these legal rights, many palliative care doctors use palliative sedation if the patient is experiencing unendurable suffering that cannot be alleviated by medical treatment. This means that the patient is drugged to the point of unconsciousness to eliminate suffering. Whether one eventually dies from disease or because the doctor may have stopped providing food and water, the result is the same as withdrawing or withholding treatment. We die!

WHAT ARE THE LAWS IN OTHER LANDS? Canadians are not breaking new ground by demanding that our laws be changed to allow for choice and compassion at the end of life. Medically assisted dying, subject to stringent conditions, has been available for many years in other places. Switzerland was the first country to allow it in 1940 and since then the following jurisdictions have adopted the practice: Netherlands (1992), Oregon (1997), Albania (1999), Belgium (2003), Washington (2008), Luxemburg (2008), Montana (2009) and Vermont (2013). Other countries around the world which are considering legalization, either through new laws or by challenges in the courts, are England, Scotland, Ireland, Australia, New Zealand and many states in the USA.

WHAT DO THOSE LAWS SAY? The laws in each of the jurisdictions that have adopted medically assisted dying vary from place to place but they all call for stringent safeguards to protect the vulnerable. Here is the situation if you were living in Oregon: 1. You must be 18 years of age or older and a resident of Oregon.

2. You must make two oral requests to your doctor, which are separated by at least 15 days.

3. You must give your doctor a written request, signed by two witnesses, at least one of whom is not related to you.

4. Two doctors must agree that you have a terminal illness that will lead to death within six months.

5. Two doctors must agree that you are capable of making and communicating health care decisions for yourself.

6. If either doctor believes that your judgement is impaired by psychiatric or psychological disorders, such as depression, you must be referred for a psychological examination.

7. Your doctor must tell you about alternatives that are avail-

health able such as comfort care, hospice care and pain control.

8. The doctor must request but may not require, that you tell your family about your decision.

9. You can cancel your request for help to die at any time.

WHERE DOES CANADA STAND? There is good news and there is bad news about the law in Canada. The bad news is that we don’t have a law. The good news is that because we don’t have a law we can design our own. We can use the wording that Canadians want.

So think about it, and talk about it with family and friends.

Decide the wording you would want. Tell your MP. Our legislators need to hear from you, and you need to speak up!

PROVINCIAL LEGISLATION On June 12th, the government of Quebec tabled Bill 52 “An Act respecting end-of-life care”. It will give residents of Quebec the right to have medical help to die, providing they are mentally competent, have an incurable illness and suffer from unbearable pain.

The Quebec government considers dying to be part of the continuum of life and therefore should be treated as part of health care. Health care is a provincial matter and is not subject to interference by the federal government. This decision has been reached with a great deal of care and consultation.

After hearing months of input from individuals and organizations, an all-party committee of the Quebec National Assembly recommended unanimously that medically assisted dying was the right of every adult resident of Quebec.

THE CARTER CASE The Criminal Code prohibits a person from assisting another person to commit suicide. The maximum penalty for this offence is 14 years in jail. In November 2011, four plaintiffs challenged that law in the B.C. Supreme Court claiming that it contravenes the Canadian Charter of Rights and Freedoms.

In June 2012 Justice Lynn Smith came to the following conclusions (among many others): a. Gloria Taylor, one of the plaintiffs, suffers from ALS. This may result in her becoming disabled and, if that time comes, she will be unable to end her life if she decides to do so.

However, able bodied individuals are able to end their life at any time they choose. Gloria Taylor is being discriminated against as a result of her disability. This contravenes the Charter which explicitly prohibits discrimination on the basis of disability. b. Some people argue that if medically assisted dying is legalised there is a danger of “the slippery slope” occurring.

They fear that the conditions imposed now might be eroded in the future, with the result that vulnerable people will be put to death against their will. The judge, however, agreed with the evidence of Professor Margaret Battin who said “The slippery slope arguments are utterly unfounded; the objective data available from jurisdictions where legalization has taken place simply do not support these predictions.

The opponents’ presentation of data from Oregon and the Netherlands is generally incomplete, frequently filled with factual inaccuracies and distortions.” (So the slippery slope argument is not supportable by the facts.)

c. Justice Smith also said “My review of the evidence on the experience in permissive jurisdictions (e.g. the Netherlands, Oregon etc.) leads me to conclude that the risks inherent in permitting physician-assisted death can be identified and very substantially minimized through a carefully designed system that imposes stringent limits that are scrupulously monitored and enforced.” d. The judge’s decision in the Carter case was totally in favour of allowing medically assisted dying, under strict conditions, to all mentally competent Canadians who make that choice. Unfortunately, the Harper government has decided to appeal that decision and wants to retain the section of the Criminal Code that would send a person to jail for 14 years for assisting someone to end their life gently.

QUESTIONS FOR THOSE OPPOSED 1. If I can’t choose something as personal and important to me as how and when I die, who can? And why?

2. Who has the right to make me suffer? And why?

3. I have the right to refuse medical treatment and die. How is that different from asking for medical help to die?

4. How do you demonstrate that the present government policy of prohibiting the giving of help to someone who wants to die is causing more good than harm? What is the evidence?

5. I believe that my life’s value comes from its quality and that I should be able to determine when my life no longer has any value. Your beliefs may be different. Should either of us, by using the laws of Canada, be able to regulate the choices available to others? Should this not be a personal decision?

6. If you argue that there is the possibility of Canada sliding down a “slippery slope” in the future, what scientific evidence do you have from the 35 years of combined experience available from the Netherlands and Oregon to support your position?

SUMMARY If you believe that the way that you live your life and the way that you die should be decisions you make, without government interference, then you should consider demanding a change in the law so that medically assisted dying is available to those who want it. It will not be the choice of many people. But for those who choose it, there is no reason for the majority to discriminate against the minority. Please think about this topic and talk it over with family and friends. Talking about it won’t kill you!

John Warren is Vice President of Dying With Dignity, a national, member-based charity committed to helping people achieve quality in dying. Their mandate is to help people understand all their end of life choices and work for choice in dying for all Canadians.

RESOURCES AND REFERENCES Books: How We Die: Reflections on Life’s Final Chapter, by S. Nuland.

Physician Assisted Dying: The Case for Palliative Care and Patient Choice, by Timothy Quill and Margaret P. Battin.

Websites: www.dyingwithdignity.ca contains newsletters, blogs and many other resources. www.wfrtds.com contains news on the right-to-die movement.

Spinal Columns

27

frommyperspective

FROM MY PERSPECTIVE

by Larry Pempeit

J

ust over 30 years ago there seemed to be an awakening within the province of Alberta that people with disabilities were not wards of the province or ’special’ people who needed to be cared for by the province.

A whole new generation of social advocates with disabilities became active in developing their communities to be more accessible and welcoming. They were not afraid to speak out against conditions faced by people with disabilities on a daily basis. And they weren’t afraid to roll up their sleeves to get it done!

To help with this process, there was a new government led by the late Honourable Peter Lougheed. A transformation began in Alberta. People with disabilities began to be recognized as ‘people first’. With needed supports, it was recognized that we could be contributing citizens to the province.

During those formative years we saw the development of accessible homes and housing projects, employment opportunities, more accessible streets and buildings and a host of other improvements.

Individuals with higher needs saw a dramatic switch in government support. Many of us who lived in institutions were now given the opportunity to live in the community, either in a home of our choice and if we needed it, self- managed care. Other individuals, like me, developed apartments that we designed and operated. Homecare was limited but available, with enough funding for us to live independently and manage our care.

Over the years, there were even greater improvements and many disappeared. I think there followed an era of complacency.

People became less involved; things never became that bad for most of us.

That changed in June of this year. That’s when Alberta Health Services informed three of the groups that had developed their properties and managed their own home support program, that their home care contracts would not be renewed. A new ser-

vice provider had been contracted and would be providing our care. No consultation and no opportunity for discussion.

Abby Road Housing Co-operative Ltd. (26 years), Artspace Housing Co-operative Ltd. (20 years) and Creekside Support Services (16 years) all ran their own support service program, which included management of funds and staffing to ensure that the needs of residents were met. It was a co-operative effort that worked. The potential loss of these contracts was a terrible blow to the independence movement started 30 years before.

At first the response was dismay, depression, and “why us”.

This quickly changed to anger. Anger about how a government that supported freedom of choice and support for individual control could do this. This anger became a motivating force to work together to try to reverse this decision. With the help of social media, a groundswell began.

An online blog called Camtait Talk became a voice for individuals to express their concerns, a Facebook page was created, and an online petition started, that at last count, had over 2300 signatures. A letter writing campaign saw hundreds of letters to elected officials. In addition, there were many meetings with various community leaders.

At this point, Premier Alison Redford asked to meet with representatives of Creekside Support Services. On Sunday, June 17 (Father’s Day), three representatives; Cam Tait, Heidi Janze and myself were given 30 minutes to speak candidly with Premier Redford and David Hancock, Minister responsible for Community Supports and Seniors.

Premier Redford and Mr. Hancock were very open and supportive of our delegation. Two days later, we were notified that our contracts would be reinstated!

This was especially rewarding for myself because I thought that people just didn’t want to get involved or advocate for themselves. How wrong I was. I saw people organize themselves, work together, gain confidence to speak out and articulate their needs. It reminded me of 30 years ago. That generation would be proud of today’s generation of advocates.

This gives me hope for the future. Anyway, that’s how I see it.

Personal Injury Lawyers 403.255.2636 www.vogel-llp.ca

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activeliving

OUTDOORS UNBOUND

by Amy MacKinnon

B

y now you have probably heard or read something about our Adapted Adventures program, as I like to talk and write about it a lot. Not only because it’s a really cool program that gives people the opportunities to do some pretty fun and amazing activities, but also because it’s really helping to break down some of the barriers for people to participate in outdoor activities. Here’s the WHAT behind the program. In 3 years we have accomplished a lot. We’ve embarked on a very exciting project with Hostelling International which resulted in accessibility upgrades to 4 wilderness hostels along the Jasper Icefields Parkway and we are working with them on making updates to their website to ensure accessibility of their hostels is highlighted for users. We’ve also hosted 2 summer Outdoor Weekends in the mountains; one at the Centre for Outdoor Education in Nordegg (2011); and one at Hostelling International Rampart Creek Wilderness Hostel (2013) where participants were able to partake in activities such as cycling, paddling, outdoor rock climbing, TrailRider excursions, and ATV’ing to a mountain peak. We’ve also worked with the City of Edmonton to advocate for safer and more accessible trails for our cyclists in the River Valley trail system through education and better signage. This is on top of creating 6 successful Edmonton based programs and supporting Wolverines Wheelchair Sports Association in Grande Prairie in the development of a Para Cycling program.

That’s great, you might say, but let’s get down to the WHY we embarked on this adventure. This one is easy, because I have a very firm belief that EVERYONE should have the same opportunities to access wilderness spaces and participate in outdoor physical activity. It’s not difficult for non –wheelchair users to throw a pair of hiking boots in the car, rent a mountain bike or kayak and head off to the mountains for a weekend of tranquility, physical activity and rejuvenation. We all know that for a wheelchair user or anyone with mobility impairment it’s just not that easy, it would take a team of people working out a nightmare of logistics to make that same trip work. And

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for some people, frankly, it’s just not worth all the extra work.

However, I know that the list of benefits from having access to these spaces and participating in outdoor activities is longer than what I could write on this page, and I believe that all of us have a right to those experiences. So until it’s that easy for wheelchair users to head off on a mountain adventure, we will keep plugging away at breaking down barriers.

Now to my favorite part of this article (I’ve been anxiously waiting to spread this news)… the WHERE. I’ve gotten a lot of feedback over the years complaining it’s not fair that Edmonton is the only location for the Adapted Adventures programming, and I agree. It’s where I live and work so it was only natural that I would start the program there. However, I am ecstatic to announce that we recently received funding through the Alberta Sport, Recreation, Parks and Wildlife Foundation to expand the Para Cycling, Rock Climbing and Paddling programs to some other Alberta locations!

WHEN? This fall we will be hosting Para Cycling clinics in Red Deer, Lethbridge and Medicine Hat to gauge interest and determine the final locations for new programs next spring. This winter we will be working on expanding the paddling program to a couple other Alberta locations with canoe and kayak clubs, and the rock climbing program to other Alberta locations with accessible indoor climbing gyms.

HOW to get involved is by emailing us at outdoor@cpa-ab.org or calling the office at 780-424-6312 ext. 2231 to express your interest in participating in programming in your community.

I bet you are so excited you are vibrating like a little bee right out of your chair; don’t lose that enthusiasm! I encourage you all to challenge yourself and break down your own barriers by venturing outside of the city to somewhere beautiful (this shouldn’t be hard, Alberta is full of them), quiet and peaceful and experience the rejuvenation that can happen when we let ourselves escape.

I look forward to seeing you at an Adventure near you very soon!

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travel

with

TRAVELLING DELHI

by Dan Palamarek

S

ome people travel to places, some travel through places; but, in my experience, the best way to travel is with a place. My wife, Laurie and I set off for Delhi (and New Delhi) at the close of March, 2013. Before leaving I went to Eco Medical in west Edmonton to try to remedy the problem of airlines not knowing how to disengage the gears on my power wheelchair. We devised a simple label that read, “Push Lever Down to Freewheel”, and stuck it on either side.

We flew Air Canada to London Heathrow and British Airways from London to Delhi. At Edmonton I was allowed to keep my power chair to the gate. On transferring to the aisle chair, Laurie disconnected the battery from the chair motor and pushed the gear levers to the freewheel position, educating the ground crew as much as possible. It’s about an 8 hour flight to London, and I chose to sit on my Roho cushion. That turned out to be more comfortable than just sitting on the aircraft seat. We had booked about a 2 ½ hour window to catch the British Airways flight to Delhi but we were late exiting Edmonton. We had also bag checked the power chair through to Delhi. Upon arriving in London, we missed the connecting flight, but were given a place on the next available flight, and I was offered my power chair to avoid having to use an airport wheelchair for over 6 hours. I gratefully accepted.

Leaving London was interesting. The jumbo British Airways airliner had not been given a gate. It loaded from the tarmac, well away from the terminal. Passengers with mobility difficulties were placed into a food service truck and loaded onto the plane through the door to the crew’s front galley way. British Airways uses the modern, foldable aisle chairs that are used by Cathay Pacific. These chairs offer better support than the Washingtontype aisle chair and are stored on board for the flight. The flight to Delhi was 9 hours. Just before landing, the flight crew announced that it was spraying some type of disinfectant that was not harmful to humans. They did not provide the reason for this, and they walked through with a spray can and sprayed to the top of the cabin. Back in Canada, Laurie was told that all in-coming flights to India are sprayed with something, because everything grows in India.

On arriving in Delhi I was transferred into a typical airport chair and Laurie and I and our uniformed handler were off to clear customs. The Delhi airport is modern and very busy.

We were placed in a special line for wheelchair users, and interlopers were quickly dispatched by the legitimate line

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users and by customs officials. Rules are rules, especially for a country of 1.2 billion. Clearing customs accomplished, and discovering the power chair to be in order, we then located the hotel transport that Laurie had arranged. We were to have arrived at 1:00 am, and we had been told the metro was shut off? The accessible hotel transport turned out to be a 4X4 van, nothing more. My power chair is at least 250 pounds and 4 grown men have difficulty lifting it. The driver and handler managed to lift me into a seat and, with help from others, lifted the chair into the back of the van without dropping it. On arriving at the Metropolitan Hotel, there were again ample people to remove me and the chair from the van. India relies on people power to a great extent, and I was unable to find an electric wheelchair lift in any vehicle during our stay. Even on the Government Hop On Hop Off Tour Bus, the fold-out ramp was not 3 feet long, making for a steep exit and entry, with many hands to help. Help was always to be found, and was always friendly and respectful.

Delhi is an ancient city and has been continuously inhabited since the 6th century BC. Through some of its history, Delhi has served as the capital of various kingdoms and empires. It has been captured, lost, and reshaped several times. Metropolitan Delhi includes the National Capital city of New Delhi and has a population of 22 million. The city is located in northern India and is many miles away from a coast. The Yamuna River, sacred in Hindu belief, is the only major river flowing through Delhi.

Everyone appears to be able to speak 3 or 4 languages, making my English only status seem quite inadequate. However, all the Indians that I encountered graciously accommodated the English language. As it turned out, the hotel we booked over the internet turned out to be centrally located and very accessible.

The hotel tour guide offered day tours, but only in vehicles that were unequipped for me and the power chair to travel together. Laurie and I prefer to find our own way in any event, and India offers much. Sidewalks are generally available but curb cuts are irregular. The street traffic allows for all forms of transport, from buses and cars to rickshaws and pedestrians.

Slower movers stay near the curb. Crossing a street or using a traffic circle is done respectfully with all sizes of users taking turn and giving way as required. This was almost art form. In Canada, pedestrians are distinct from street traffic and thus walk against the traffic flow. In India, pedestrians are part of street traffic and walk calmly and confidently in amongst other travelers.

travel Our first full day in Delhi was the happy Holi Festival. This color-filled festival of Holi is celebrated on Phalgun Purnima.

The Holi Festival has ancient origins and celebrates the triumph of “good” over “bad”. The celebration bridges the social gap and renews sweet relationships. On this day, people hug and wish each other “Happy Holi”, and in good humour spread powdered paint among friends and onlookers. On the second day, Laurie and I ventured out onto the streets, heading towards the central shopping area at Connaught Place. We used the sidewalks when we could, but took the street as well. We relied on local persons for advice and direction, and for assistance in crossing busy roadways and roundabouts. Connaught Place has a western shopping orientation. Authentic and better priced shopping was found elsewhere in local markets or Government sponsored venues. Under Connaught Place is the central metro station. The metro is very modern and well organized. It becomes crowded at times. The staff are helpful, and at one point, took time to lead us to our exit when we became hopelessly lost. Train levels did not always match platform levels; but, as usual, there were willing hands to help. The hotel was about 1 ½ kms to Connaught Place and the route was always interesting. A resident gave us a less busy route as an option.

One of the most dignified and majestic sights I have seen anywhere is Rajpath (King’s Way). This is a broad avenue, lined on both sides with huge lawns, canals and rows of trees. At one end is the Presidential Residence flanked by the Ministry of Defense and Ministry of Foreign Affairs Government Blocks. At the other end, at least 2 kms away, is India Gate, a mammoth Arch that pays homage to fallen soldiers. A British tribute to Indian Independence in 1947, located just behind India Gate, lines up perfectly to portray a bell hanging from the Gate’s immense arch (when seen from afar). Both ends of the avenue rise to produce unobstructed vistas. Laurie and I took the metro and then walked almost the whole length of Rajpath. Off to one side, and nestled in stately trees, was the National Museum, where we spent time becoming educated. I was struck by the epic size of the structures and monuments.

In 1638, Shahjahan transferred his capital from Agra to Delhi and laid the foundation for Shahjahanabad, the seventh city of Delhi. The Red Fort, a UNESCO World Heritage Site, was built in seven years in the 1640’s. The Mughal royal family lived there until 1857.

Laurie and I became familiar with the local shopkeepers and rickshaw drivers. They were usually curious about the power chair, how it worked, and what it cost. The cost of a power wheelchair at North American prices would be prohibitive in Indian currency (50 rupees to 1 dollar); my suggestion was always local industry, with local materials, at local costs and prices. As for manual chairs, India has bicycles. It has many electric 3-wheeled rickshaws. A variety of wheelchair types may be a possibility. At the India Gate, a father, accompanied by a younger man, was staring at me. The younger man spoke English. He explained that the father’s 17 year old son had had a spinal cord injury in an accident 3 years past. I shared what information I could. When the conversation was coming to a close, the younger pointed out my hands to the father, who tenderly took my hand and examined it. I could tell that he knew well such stilled fingers. His son was still in rehabilitation. In

Delhi, ethnic and religious groups live together side by side.

At the end of our hotel road was a Catholic Church with a Sikh Temple right across the street. We had memorable visits with both.

Delhi is lush. Our room at the hotel was on the third floor; and looking out, all that you could see was a canopy of trees with the occasional spire or building top protruding. Below the treetops was a bustling and energetic street life. Delhi is warm with moderate humidity. Good air quality is thanks to proactive government. The hotel recommended bottled water, but I saw local residents filling bottles from public taps. Near the end of our 10 day stay, a rickshaw driver escorted Laurie and I through the neighbourhood, ostensibly to find craft stores. He took us off road to an establishment at the end of a back alley. As there was a step, Laurie went in, coming out a few minutes later with the young manager, who knew Jack and John Agrios of Edmonton.

Small World. Leaving Delhi was simpler than the arrival. We opted for the metro to the airport. Strangely, the TD VISA travel agent who booked the flights for us said our return would be via Air India to Mumbai (Bombay), and then on to London 6 hours later, again with Air India. Clearing international customs in Mumbai was a 4½ hour event; but it is a busy airport and lineups and procedures take time. It was decided by security that my metal power chair had to be x-rayed? The x-ray machine was 3 feet off the floor, so we had to remove the 2 heavy dry cell batteries from the chair so that it could be lifted. The batteries are extremely weighty but provide excellent traction, and may be quickly slipped out and put back. Throughout the trip, we tried to keep an open and respectful attitude, and were rewarded with treatment in kind. Their newspapers write fearlessly and honestly. We can learn a lot about living patiently, with dignity and confidence, from the Indian peoples.

P.S. Travelling to India requires Visas from the Indian Government. Online tourist Visa applications are available. You physically deliver a completed application, your passport, and the fee to an Indian Consulate.

There is one located in south Edmonton. The passport is returned in a week with a Visa affixed to it. Air Canada now requires a form to be completed at the airport for power wheelchairs.

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travel

New York on a shoestring

by Kuen Tang

N

ew York! New York! What a wonderful land... I was singing this song over and over as I planned my first big vacation after my accident of 10 years. My friends Amy and Dave were getting married in New York and I was invited.

As a person with a high level disability, with all the needs of equipment, transportation, caregiver and accessibility in a different country, I knew this trip had to be carefully planned.

This was also my chance to show family and friends that I can be independent.

Planning started in September 2011 for my friend’s wedding in April 2012. I created a list for my perfect vacation in New York as if I was still the old me before my accident; then I added all that I require now, as the new spinal cord injury me, now requiring an aide as well as supplies such as a commode, etc. I then looked at my bank account and said “uh oh.” Still determined to do this on my own, I reviewed my list. After crossing off more than half the items, my mood was as black as ink as it seemed my trip to prove my independence was looking as gloomy as the dark sky before a storm.

I struggled with the idea of canceling my vacation! Finally, I decided I would combine the wishes of the old me with the reality of the new me and still do the trip, albeit thriftily! Determined and eager, planning started again for my now newly-revised-

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Kuen Tang in New York City. perfect vacation.

After looking at “wishes” versus “needs” and figuring out how much it would cost to travel at a decent time, stay at a good hotel, try new food and do some sightseeing, my bank account still didn’t look good. That’s when my super hero Chinese-thrifty side kicked in.

I started watching for seat sales like Cyclops’s (from X-Men) laser eye, and after three months, managed to snag two tickets to New York - for less than $300 per person. Transport of medical bags/equipment is free and we packed carry on backpacks.

The only catch was that the flights were at 6:30am!

Hotels are expensive in New York. It would have cost over $1200 plus hotel fees and taxes to stay for 8 nights (for the cheapest and “somewhat” accessible rooms). So I posted a question on a forum called Carecure.org asking other individuals in wheelchairs how they overcame this challenge. I received many useful tips. I was able to find a few wheelchair accessible rooms for rent by New Yorkers using airbnb (airbnb.com). I finally booked a room in a loft that had great reviews and a good sized bathroom (no wheel-in showers). A savings of more than $600.

Taxies are also expensive in New York (especially if you’re a tourist) and the few wheelchair taxies must be booked in advance. Since I strategically booked my residence in Brooklyn (between Manhatten where I wanted to visit and Long Island

regions

what’s new in

Alberta

CALGARY

Kuen at the Museum of Modern Art. for the wedding); this cut our transportation cost a lot. We purchased two weekly passes for $60 which gave us unlimited access to buses and subways for 7 full days (because of a misunderstanding we actually only needed to purchase one ticket because an aide can ride for free). I also downloaded a free iPhone application called NYCway, which comes with maps of subway stations and locations of all wheelchair accessible sites.

There are so many places to eat, with at least four restaurants on every block (if not more). Since our accommodation included a kitchen area, my aide and I cooked many of our meals and saved money on food. As my main goal was to visit New York, I planned a strict food budget to include a “hotdog fund” of $100 and a “real meal fund” of $400. I actually spent: $60 for groceries, which covered breakfast and four dinners and $40 on street vender food. My only regret was not trying the famous Japadogs and lobsterdogs.

In order to make things easier for my trip and transportation, I decided not to bring my commode chair. I created a list with a carefully calculated amount of items to bring on the trip – right down to the numbers of Q-tips. I changed my bathroom routines and had to come up with a new way to manage in my wheelchair.

This proved to be a challenge, especially on sightseeing days, however, strict packing and not bringing my commode chair saved us time, energy and money for the trip.

And what a wonderful experience it was, along with some wonderful hiccups! We did most of the usual tourist attractions.

The most memorable moment was visiting MoMa (Museum of Modern Art) and the best experiences were getting lost and finding so many helpful New Yorkers who were eager to help two lost tourists. Best of all, I got to watch an off broadway show called Spider-Man the Musical.

Altogether, including the cost of my aide/traveling companion, our total budget and expenses came to less than $3500 for my nine day, dream New York vacation. Being in a wheelchair should not hinder your desire to see the world. With proper planning and thrifty thinking, you too can be singing...New York!

New York!

Peer Events The Calgary Peer Program has been full of wining and dining as peers take part in the monthly Restaurant Review to critique some of the hottest spots in town for great food and accessibility for individuals with mobility challenges. CPA (Alberta) would like to thank Pipella Law for sponsoring a portion of the cost of the Restaurant Review evenings.

Peers also enjoyed Family Fun Day held on June 15, 2013 at Calgary Rotary Challenger Park. Over 1000 people showed up for the day which included show’n shine by emergency response crews (fire, police and ambulance) as well as face painting, petting zoo, aboriginal dancing, and much more. Check out more of the fun activities by searching “Family Fun Day” on YouTube.

SCI Fitness and Wellness Centre Calgary

Patricia McNamara (right) works with trainer.

The only SCI Fitness and Wellness program of its kind in Calgary is now accepting participants! Our facility provides a full gamut of specialized, top of the line fitness equipment with a mission to promote active living and increase quality of life for those with spinal cord injuries and other physical disabilities.

EDMONTON Peer Events The Edmonton Peer Program has once again brought peers together through various activities and events such as fun poker nights, barbecues, meet and greets, coffee dates, watching Oilers games at the community pub and a family support picnic, to name just a few. Thank you to Coloplast for their ongoing support of these activities.

To keep up to speed on upcoming events visit our website at www.cpa-ab.org, “like us” on Facebook, follow us on Twitter and make sure we have your up to date e-mail address!

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regions CPA (Alberta) Provincial Awards CPA (Alberta) was honoured to recognize volunteers and supporters at a recognition luncheon held on June 15, 2013.

Regional Volunteer Recognition: Awards presented in recognition of individuals who, through their volunteer efforts on behalf of CPA (Alberta), have contributed to improving the lives of those with spinal cord injuries or other physical disabilities.

Winners of the Regional Volunteer Recognition Awards were Kiley Geddie and Paul Nemetchek.

Kiley Geddie is not only a long time, outstanding volunKiley Geddie teer for CPA (Alberta) but also a great advocate for people with disabilities. Not only does Geddie assist with the coordination of “Young Guns”, a peer program for young males with disabilities under the age of 40, but he also volunteers in many other capacities. As a high level quadriplegic himself, Geddie encourages others to become involved with CPA (Alberta) and hosts many of the “Young Guns” events.

P a u l Ne m e t c h e c k w a s Paul Nemetcheck introduced to CPA (Alberta) through the Chair-Leaders Enabling Access event in May 2011 when he spent a full day in a wheelchair and fundraised for the event. Nemetchek has expanded his role with CPA (Alberta) through participation in organizing committees for events such as Chair-Leaders and the annual Red Carpet Affair, helping with major office cleanup and repairs and, most recently, was elected as a member of the CPA (Alberta) Board of Directors.

Corporate Recognition: A provincial award is presented to an outstanding corDick Jewell porate supporter of the CPA (Alberta) through ongoing and long-term financial support and contributions of personnel, expertise, ideas and enthusiasm. The Corporate Recognition Award was presented to Dick Jewell (winner of the Ambassador in 2003) for his continued, long time corporate support of various fundraising events in Red Deer and area, such as golf tournaments and gala dinners where he graciously donated jewelry for raffles and silent auction items.

The Ambassador Award: A prov incia l awa rd presented to an individual in recognition of his/her longEleanor and Dr. Robert Sugarman t i me suppor t of t he CPA

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(Alberta) in the area of fund development. This person has contributed to the financial well-being of the organization and has contributed much to his/her own legacy. The Ambassador Award was presented to Eleanor and Dr. Robert Sugarman. The Sugarmans have been “Champion” sponsors and supporters of the Red Deer Golf Tournament for the past five years. Eleanor has served as a CPA (Alberta) board member for four years and provides support to the association as a whole but particularly the Red Deer office, where she brings forward information about challenges and obstacles faced by persons with disabilities in that community.

Boosting Accessibility with Technology As a non-profit organization, CPA (Alberta) was coping with an aging computer network infrastructure. Through the generous support of Intel(R), CPA (Alberta) is now able to provide improved services to individuals with spinal cord injuries and other physical disabilities. “The upgrade was really overdue. Things were starting to run very slowly,” says Simon Smith of Computer Integration Resource Centre* (CIRC), which has been providing CPA (Alberta)’s IT support for more than 10 years. The impact of this leveraged support has included: • Purchase a Lenovo* T520 “accessible” laptop powered by the 2nd Generation Intel® CoreTM i5 processor which helps people with spinal injuries “try before they buy” a wide range of tools they can use to increase independence.

• Virtualization with two HP* Proliant* servers powered

by Intel® Xeon® 5620 processors which eliminates the need for four additional servers.

• An online donation system that has helped to increase donations.

CPA (Alberta) thanks Intel(R) for their generous support!

GRANDE PRAIRIE Thank You to Kay McVey Charity Golf Tournament Thank you to golfers, volunteers and supporters who took part in the Kay McVey Charity Golf Tournament. Special thanks to Cate Gunson and Sheila Wendt whose support made the day a wonderful success.

Medical Appointment Drivers Special thanks to our silent partners who made a total of four road trips to Edmonton (January to July 2013) to help individuals attend medical appointments.

Hand Cycling Event A very successful hand cycling clinic was held on June 8, 2013 at the Centre 2000 parking lot hosted by the Wolverines Wheelchair Sports Association. CPA (Alberta) had the pleasure of presenting the services we offer in our Adapted Adventures program with hand cycling as well as a number of other exciting active living options.

MEDICINE HAT New Beach Chair at Echo Dale Regional Park Medicine Hat now has a beach chair for use at Echo Dale Regional Park. Anyone wishing to access the beach and not able to due to accessibility can ask for information at the life guard stand. You must be able to self transfer or supply your own help as staff are not trained in this area.

r egions

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library in our library

EAT WELL, LIVE WELL ABOUT THE AUTHORS Joanne Smith B.A., BRT Dip, C.N.P www.fruitfulelements.com Joanne is a graduate of the Institute of Holistic Nutrition in Toronto, holds a degree in psychology from York University, as well as a diploma in radio & television broadcasting from Seneca College.

As a Certified Nutritional Practitioner, Joanne runs a successful nutrition business specializing in providing optimal nutritional health for people with neurological conditions (spinal cord and brain injuries), digestive dysfunction and weight loss.

Joanne has presented at conferences across Canada, including the National Spinal Cord Injury Conference in 2010 and 2012 and Ontario Brain Injury conferences.

Her expertise in the disability community comes from her personal experience of living with a spinal cord injury for twenty-five years, as well as her years as host and producer of two national TV programs that focus on telling in-depth stories about Canadians with disabilities, the Gemini award winning CBC show Moving On, and Accessibility in Action.

Joanne’s dedication to raising awareness and improving the lives of Canadians with disabilities led to her receipt of the King Clancy Award in 2006, induction into the Terry Fox Hall of Fame in 2007 and being honored with the Gabriel Award in 2008.

Eat Well, Live Well with Spinal Cord Injury is a comprehensive, practical nutritional guide written specifically for individuals with spinal cord injuries, as well as their families, friends, caregivers, health and medical professionals. This book contains 16 chapters, each focusing on a specific secondary health condition. This includes digestion, pressure sores, bladder infections, constipation/diarrhea, osteoporosis, pain, fatigue, respiratory infections, anxiety, stress, fatigue, sleep, liver function, cardiovascular disease and obesity. Each chapter explains why the condition may develop after SCI and provides information on how nutrition can help prevent and manage the health issue through specific nutrients (foods, supplements and herbs). There are also easy to prepare nutrient dense recipes and reference charts of specific nutrients and supplements recommended for each health condition.

Eat Well, Live Well with Spinal Cord Injury aims to focus attention on the important, therapeutic role nutrition plays in the lives of individuals with SCI and inspire future research in the area of nutrition and SCI. Most importantly however, this book will help empower you to have greater control over your health and enhance your independence in an easy, practical and cost effective way. More information can be found at www.eatwelllivewellwithsci.com.

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Kylie James B.Sc. (O.T.), C.N.P www.korunutrition.com Kylie graduated from Auckland University in New Zealand with a Bachelor of Health Science in Occupational Therapy in 1996. She has worked for over 15 years as an occupational therapist in New Zealand, England and Canada.

Kylie is a Certified Nutritional Practitioner, having graduated with first class honors from The Institute of Holistic Nutrition in Toronto. Kylie runs a successful nutrition business specializing in neurological conditions, mental health, weight management and digestive issues. She has presented at the National Spinal Cord Injury Conference in 2012 and Brain Injury Conferences across Ontario.

Kylie has specialized in working in the field of illness and injury, in particular with people living with spinal cord injuries, chronic pain and brain injuries and various other health issues both as an occupational therapist and as a nutritionist. Kylie became increasingly dedicated to researching nutrition and spinal cord injuries when her one and a half year old nephew sustained tetraplegia in 2009.

Kylie is also a certified personal trainer and a competitive athlete. She has competed for her country at a National and International level.

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