Spinal Columns: Fall 2014 Volume 29 Number 3

Alberta’s Health & Lifestyle Magazine for People with Spinal Cord Injuries & Other Physical Disabilities

Fall 2014

columns spinal

Publications Mail Agreement #40011327

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spinal

columns FALL 2014 VOLUME 29 NUMBER 3

DEPARTMENTS

COVER STORY 16 High Hopes

The Editor, Spinal Columns Canadian Paraplegic Association (Alberta) #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 (780) 424-6312 publications@cpa-ab.org

Editorial

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Letters to the Editor

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In the News

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SAIL – Unique Model Under Threat

Recognition 10 Red Carpet Affair 2014 11 Meet the Staff

EDITOR................................BETTY MACISAAC ASSISTANT EDITOR...........ZACHARY WEEKS LAYOUT/DESIGN......... STEPHENIE MOTYKA

Spinal Columns is published three times a yea r by t he C a nad i a n Pa rapleg ic Association (Alberta). Advertising rates available upon request. Ideas, submissions, r e que s t s , su g g e s t io n s a nd le t t e r s are always welcome. Address them to:

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Will marijuana be the new superdrug for pain sufferers?

FEATURE STORIES 20 Hospitalization

In Our Library Accessible Architecture: A Visit from Pops

In Memoriams 12 Remembering Marlin

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Active Living Storm Chasing Housing Healthy Housing Initiative

Motivation 22 Changing Perspectives

Material printed in Spinal Columns may not be reproduced without written permission from the Canadian Paraplegic Association (Alberta). The views expressed in this magazine do not necessarily represent those of the Canadian Paraplegic Association (Alberta). We neither endorse nor guarantee any of the products or services advertised within Spinal Columns and readers are strongly urged to thoroughly investigate products/compa nies before purchase.

Accessibility 24 The Need for Independence

Spinal Columns is available in alternate formats by contacting our office as listed above.

Innovations 33 Bringing Tetra Home to Edmonton 32 Adaptive Products

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

Opinion 26 From my Perspective

Active Living 28 Motivation 101 Travel 30 San Diego - My Destination of Choice

A long word that packs a big punch.

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Regional News What’s New in Alberta Functional Electrical Stimulation Cycling Program

ISSN 1195-5767

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editorial

CHANGE IS A COMMON EXPERIENCE

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e are a few months into our 2014/15 business year and change is the common experience for all connected to our association. I would like to share with you some of the changes that CPA (Alberta) has experienced.

Changes in our external environment: A small part of our program funding comes from the Ministry of Human Services. They have reorganized their contracting process and, as a disability support organization to persons with physical disabilities, our contract will be managed by the division known as PDD (Persons with Developmental Disabilities). With this change, our contract parameters have not been changed for this fiscal year. As the Ministry transitions to a stronger focus on “employment first strategies”, we need to work hard to assist policy developers in understanding the impact our services have on social and economic participation.

United Way agencies across the province have always been a critical funder for local CPA (Alberta) services. United Way organizations have all gone through strategic reviews, tightening their focus in communities to “mobilize collective action to create pathways out of poverty.”

At CPA (Alberta) we believe our programs and services are strongly aligned with the vision of the United Way organizations of Alberta, exerting energy each year to maintain a positive relationship with these important funding bodies.

Our corporate and donor support has remained stable and our volunteer base has grown related to support to deliver special events which generate additional revenues. CPA (Alberta) will continue to evaluate and refresh all of our fund development strategies. We anticipate this will enable us to remain competitive in an environment of ever increasing competition for sponsorship and donations as a result of provincial and federal government budget reductions related to social programs.

We continue to forge strong working relationships and partnered events with the rehabilitation centers in Edmonton and Calgary, Calgary Health Trust, the Glenrose Foundation, The Alberta Paraplegic Foundation, the Rick Hansen Foundation, the Rick Hansen Institute and other organizations within the disability sector in Alberta.

Changes in our internal environment: We started the fiscal year with a launch of our new client services program model that resulted from a comprehensive process including a review of community rehabilitation models, and identification of best practice considerations. A diagram model can be found at http://www.cpa-ab.org/programs_services/rehabilitation. We also identified the complimentary programs/services that we provide, including information, peer, community development and active living.

Our Board of Directors has had a busy year, exploring social enterprises that might be aligned to our mission, revising policies related to pet and service dogs in our offices, conflict of interest, and code of conduct for staff and volunteers. They also completed revision of our bylaws and approved an association name change - watch for a launch announcement in the fall!

I want to express my sincere thanks to all of our financial supporters, as well as our staff and our core volunteers who help us in so many ways, including our administration, reception and special events, and especially our Board of Directors for their strong governance.

- 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 Telephone: (403) 341-5060 Fax: (403) 343-6321 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 Tel: (780) 743-0307 Fax: (780) 743-4563 E-mail: fortmcmurray@cpa-ab.org CPA (ALBERTA) BOARD OF DIRECTORS Connie Berkshire Margaret Conquest Harvey DeCock Shamel Elsayed Kent Hehr Timothy Hill, Secretary Ron Jewitt Paul Nemetchek Ray Royer, Treasurer Souheil Saab Christopher Schamber Ned Shillington, Chair Eleanor Sugarman Dale Williams, Past Chair Mark Wilson

Fort McMurray Edmonton Edmonton Calgary Calgary Calgary Edmonton Sherwood Park Edmonton Edmonton Lethbridge Calgary Red Deer Grande Prairie Grande Prairie

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

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LETTERS TO THE

EDITOR

Dear Editor,

Last week, as we were soliciting sponsors for Chair Leaders, we came across what should be the poster building for the entire CPA! It was the Paradise Inn & Suites in Valleyview, AB. The manager, Mike Balabuck, took us for a tour of one of three completely wheelchair-friendly suites. Spacious, with a huge bathroom complete with roll-in shower, lowered phone, sink, raised toilet, tilted mirror, the works! There is a lowered peephole in the main door. The room next door is accessible for family or caregivers. The entire hotel is disabled accessible, all common areas, including the pool area, have been built to code. Mike is very proud of his new facility, and he should be - just a perfect place for disabled travellers and their families! Contact info: Paradise Inn & Suites, 3609 Highway Street, Valleyview, AB, T0H 3N0, 780-552-2338 or 1-877-552-2338. Just thought that fellow disabled persons would like to know of a great place to stay on Highway 43 from Edmonton to Grande Prairie.

Kate and Mike Gunson

Dear Editor, A DAY WE WILL NEVER FORGET. Welcome to the rare and devastating strange world of Locked-In Syndrome. Looking back, it is as though time has stood still. Gone are the days when we really didn’t know if there would be a tomorrow.

And yet, here we are, 2014! Today Sandy has excelled well beyond the expectations of any medical journal prognosis. And the journey, or marathon, as Edgar would say...is only just beginning!

Yes...the early days were dark and not very promising. But we will never forget the day Edgar Jackson came wheeling in, at warp speed, to our lonely hospital room. Apparently there was a meeting of sorts going on across the hall.

Edgar not only brought words of comfort and encouragement, but he brought food! I was starving, having not left Sandy, my wife’s side, for many hours. We exchanged conversation and laughed at Edgar’s frank and honest opinion on lifeafter catastrophic injury. After all...he was talking through firsthand experience.

Hence began our introduction and relationship with the Canadian Paraplegic Association (Alberta). In fact, just knowing there was help available and others, who were going through similar trials, gave us strength and hope to carry on.

Our latest adventure was to write a book about Sandy’s life after injury. Writing was yet another step in the healing process. Our book; Blink: Life After Locked-in Syndrome, has now been sold in over ten countries. (This still blows our minds)!

On behalf of Sandy and myself, we would like to thank Edgar and CPA (Alberta) for their compassion and dedication and for extending a hand of friendship and direction in time of need. The tireless work and valuable connections they provide to the public and those affected by injury and illness, are to be commended. In a time where few take the time to extend themselves, put quite simply...they care.

So thank you so much Edgar and CPA (Alberta) representatives. Together, your positive attitude and straight forward acceptance, helped pave the way for where we are today! Organizations like yours indeed make this world a better place!

With sincere gratitude and warm appreciation, Dave and Sandy Nette www.blinkthebook.com

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inbox

LETTERS TO THE

EDITOR

Dear Editor, Regarding the article written by John Warren, “Talking About Dying Won’t Kill You”, in the Summer and Fall issue of Spinal Columns, I agree that talking about dying will not kill you. I think, talking about dying is probably very healthy, especially if you are doing so with your spouse, children, parents, or others who love you. However, talking about dying with Mr. Warren and his associates in Dying With Dignity, could very well lead to someone killing you; likewise for someone emotionally vulnerable, someone who has difficulty communicating, someone who is old, someone who is alone, someone who is mentally ill, or someone who is just having a bad month.

These arguments always start with the case of the confident, independent, well-educated individual who is stricken by illness or disability and suddenly finds life unbearable because of unrelenting intense pain and having to depend on others for the most basic necessities of life. Why should this person not be legally permitted to hire someone to kill him, ending his misery in one final act of independence and autonomy? What we must all remember is that, in a democracy, laws exist to protect the majority of citizens, especially those most vulnerable and easily harmed. I thank God that physician assisted suicide was illegal when I first broke my neck 32 years ago (so do my parents, my wife, my kids, colleagues, banker, and life insurance company!).

At that time, and at not a few other low points since, I would have jumped at the opportunity to pack it all in given the legal and painless logistical option. This law protects me and those who love me!

Again, laws in Canada exist to protect the innocent from the bad guys. Legalizing physician assisted suicide (this is for what Mr. Warren and the Dying With Dignity folks lobby) creates opportunities for people to talk grandma into speeding along the inevitable and collecting the inheritance sooner than later: the ultimate elder abuse. It was not long ago in Canada that, when we realized that someone was suicidal, we took compassion on him, saved him, and did all that we could to show him that he matters and has inherent dignity and worth, no matter how bleak his situation. With physician assisted suicide legalized, suicide is no longer a tragedy but a legal right protected under law. Why is it that if one is young and healthy, we try to prevent suicide, but if one is old, disabled, or dependent on others we provide the comfortable, clean, and legal way to eliminate them?

Once the legal framework is in place, it is only a matter of time before clever entrepreneurs are exploiting those laws, the grey areas, and loop holes that accompany all new legislation, to profit from the lonely, vulnerable, depressed, suggestive, and suffering. We need protection from eugenicists who would welcome a law like this as the thin edge of the wedge that will

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eventually eliminate disabilities by eliminating the disabled; from provincial bureaucrats who can control ballooning health care costs through just the right sort of quality of life counselling programs. How does Dying With Dignity propose policing, enforcing, and funding the legal efforts to prevent the abuses and circumvention of this brave new law? It is extremely difficult to defend and provide justice to a victim exploited by this law when the witness of the abuse is dead. How many years after legalizing physician assisted suicide will it be before “Death with Dignity” counselling is mandated for the disabled patient before receiving provincially funded health care?

The quality of a nation is seen in the way it treats its weakest citizens. We need more palliative care. Each one of us needs to do our part by showing more kindness to those close to us who need it, letting them know that they have dignity, worth, and meaning through our words and actions.

John Warren proposes the following questions. My responses follow each.

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

Ian: no one legally can or should make that personal choice for themselves or another. Legally allowing that personal choice for an individual removes the legal protection of the weak, vulnerable, and suggestive majority from those who will exploit them.

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

Ian: no one has the right to make you suffer. Laws in Canada exist to prevent people from making other people suffer. Suffering, however, is the lot of all human beings. It is a condition that none of us can escape. It’s part of being human. How we suffer and respond to those that suffer is something that we can choose.

We can choose to unite ourselves in solidarity with those who are suffering, trying to lessen suffering through palliative care, or we can let suffering alienate us.

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

Ian: refusing medical treatment is passive and natural. It allows a disease to take its natural course and allow others to be in solidarity with and care for the person who is dying. Assisting someone to kill themselves is un-natural, sudden, final, and not long ago was called murder. Legalizing this will attract the participation of the manipulative and unscrupulous (i.e. the likes of Dr. Jack Kevorkian, Dr. Kermit Gosnell, or Robert Latimer).

Doctors dedicated to healing, relieving suffering, and curing illness are not attracted to practicing the opposite. Rather, those that are utilitarian and pragmatic regard killing the suffering as a viable solution.

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?

Ian: the current laws do not prohibit giving help to someone who wants to die. The current laws prohibit killing them. It is always more expensive, time consuming, emotionally draining, and human to offer the suffering compassion, counselling, and solidarity to show them dignity and meaning even in their

inbox suffering. Killing them is expedient, pragmatic, quick, and inhuman.

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 of others?

Should this not be a personal decision?

Ian: no. As described above. The legality of my personal decisions must be regulated by the state when the legalization of my personal decisions threatens the weakest, most vulnerable citizens of the state. It is your personal decision but a law affects all Canadians, not just you.

6. If you argue that there is a 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.

Ian: scientific evidence? What has legalizing physician assisted suicide to do with science? It takes just a little common sense to realize that legally ensuring that this law is not abused will be extremely expensive and next to impossible to regulate because the witnesses and victims of the abuse cannot testify on their behalf because they are dead! This has nothing to do with science and everything to do with legal red tape, expensive lawyers, government bureaucracy, and the medical records kept by the physicians who would actually want to assist in suicide.

For historical evidence from Switzerland, the Netherlands, Belgium, and Oregon and a different point of view from Mr. Warren’s, I would encourage readers to check out some of the statistics and anecdotes recorded in: http://w w w.theglobeandmail.com/globe-debate/assistedsuicide-what-could-possibly-go-wrong/article16982181/ http://a lexschadenberg.blogspot.ca /2014 /02/ belg iumeuthanasia-fallout-and-failings.html http://alexschadenberg.blogspot.ca/2014/02/dutch-healthminister-45-psychiatric.html http://w w w.alexschadenberg.blogspot.ca /2014 /01/thenetherlands-euthanasia-law-is.html I am sure John Warren and his Dying With Dignity friends are well intentioned in their efforts to legalize physician assisted suicide. They just need to take a step back and look beyond their own potential suffering at the bigger picture of why we have laws in Canada: to protect the defenceless.

The real scandal here is that the Canadian Paraplegic Association would give Dying With Dignity a two page forum in Spinal Columns to garner support to dismantle a law that protects all of their members. I thought the CPA’s mission was “To empower persons with spinal cord injuries and other physical disabilities to achieve independence and full community participation.” This includes removing laws passed to protect the disabled? I feel betrayed .…and in case that it matters to some, I am permanently paralyzed from a C5/ C6 SCI, relying on an electric wheelchair for mobility and caregivers to get me dressed every morning and wipe my bum.

-Ian Doll

CPA (Alberta)

RESPONSE Dear Ian Doll, Thank you for your Letter to the Editor which was forwarded to me by our Spinal Columns Editor, Betty MacIsaac. We appreciate your well thought out and respectful response to the “Talking About Dying Won’t Kill You” article that appeared in the Summer/Fall 2013 issue of Spinal Columns. We will be sure to include your response in our upcoming issue of Spinal Columns.

By way of background information, the Winter 2013 included an article entitled “Why I Oppose Legalization of Assisted Suicide & Euthenasia” written by Dick Sobsey, Professor Emeritus, Dept of Educational Psychology at the University of Alberta.

Consequently, we received a response from John Warren with the group, Dying with Dignity, who inquired about the possibility of sharing another perspective that may or may not be shared by others within the disability population.

After receiving this request, a consultation with our Spinal Columns Editorial Team and myself took place. We gave considerable thought to the various viewpoints and facts surrounding such a sensitive and sometimes controversial topic. In conclusion, we felt it was our responsibility to move forward in publishing the information so that our readers could form their own opinions on the subject matter. We would like to kindly reiterate that opinions expressed in Spinal Columns do not necessarily represent the views of the Canadian Paraplegic Association (Alberta).

We are saddened to hear that you feel betrayed because we included this article in Spinal Columns. It would never be, nor has it ever been, our intent to make valued readers, such as yourself, feel this way.

Thank you once again for taking the time to constructively express your opinion and provide us an opportunity to include your response in Spinal Columns.

We truly do appreciate and value hearing from our readers on such important topics.

Respectfully yours,

Teren Clarke Executive Director

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inthenews

IN THE

Measuring Up Edmonton

NEWS

After years of collaboration and hard work, the City of Edmonton is proud to be launching the Measuring Up Toolkit. The toolkit is aimed at organizations, businesses, communities and individuals who wish to be more accessible and inclusive to people with a range of abilities by: providing a self-assessment tool to assist you in identifying deficiencies and strengths specific to your location; and providing a list of resources to guide you in making your facility more accessible and inclusive. To find out more about “Measuring up Edmonton” contact 311 or disability@ edmonton.ca or go to http://www.edmonton.ca/for_residents/ programs/measuring-up-edmonton.asp

RAMP Program Ramps Up

Individuals with disabilities will be able to modify their homes through support from grant program increases.

The Residential Access Modification Program (RAMP) grant helps lower-income Albertans retain their independence and live in their community by offering financial support to make home modifications that improve accessibility.

The grant is increasing from $5,000 to $7,500 and can be used for changes such as the addition of ramps or lifts, door widening, flooring changes, and bathtub door inserts.

In addition, applicants can now qualify for multiple RAMP grants totalling up to $15,000 in a 10-year benefit period.

For more information, go to http://humanservices.alberta.ca/ disability-services/residential-access-modification-program.html

The Physical Activity Guidelines - Now available in 10 Different Languages!

The first evidence-based guidelines to be developed specifically to support people with spinal cord injury in living healthier, more active lives. Available on the SCI Action Canada website: www.sciactioncanada.ca.

New Handibuses for St. Albert

The City of St. Albert now has three new Handibuses The buses have a host of new features including a low floor which is ramp-accessible, a walker storage area, improved heating and an illuminated sign, among other things. The buses are painted in the City’s new branding.

Shawna Desmond of St. Albert, who is a regular Handibus user, with driver Thomas Wielobob.

Province of Alberta Announces Funding and Internships for Albertans with Disabilities.

The Alberta government has created two programs that aim to get persons with disabilities into the workforce. Premier Dave Hancock, speaking at Innovations at Work: A Learning Symposium on Enhancing Employment for Persons with Disabilities, announced a $2 million fund for projects to increase employment.

He also announced a paid internship program for 20 interns with the Alberta government. That number will increase to 25 in the second year of the program.

Recent graduates from high school or post-secondary programs can apply to those internships, which will be either six months or one year. Those interns will then be able to apply for positions with the Alberta public service. Internships have now been posted. Just search the Alberta jobs website using the keywords “intern” or “employment first” to view available positions.

BC’s Accessibility 2024

The Government of British Columbia recently released a document called Accessibility 2024, a document that proposes outcomes and measurements to increase accessibility in B.C. and outlines a set of early actions the B.C. government is able to commit to today, as well as the partnerships needed to move the plan forward. To learn more, go to http://engage.gov.bc.ca/disabilitywhitepaper/accessibility-2024/

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inthenews

SAIL-Unique Model Under Threat (re-printed with permission of Resource Magazine)

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by Louise Schutte

verlooking Rowland Road and the scenic North Saskatchewan River in Edmonton, Artspace Housing Cooperat ive is w e l l s i t u a t e d ne a r lo c a l supermarkets, schools, city transit buses, and restaurants and is within 15 minutes walking/wheeling distance to the major shopping and business establishments downtown.

A r tspace is a h igh-r ise housi ng cooperative consisting of 66 apartments and 22 townhouse units and is designed to meet the needs of singles, families, and persons who have disabilities in an accessible cooperative community. Twenty-nine of the units at Artspace are adapted, accessible units.

“When we developed buildings like Artspace, they were developed from the ground up with and by people with disabilities.

In other words, they had a role in designing the buildings and getting financing, etc. The other thing that’s unique about the building is that these same individuals wanted to manage their own care. And to do that, they formed a group called SAIL, which is a non-profit business, with the objective of getting money from the government, Alberta Health Services (AHS), to hire and manage their caregivers independently of bigger companies, and companies that really don’t have what they felt was the best interest of the individuals living in the building, at heart,” says Larry Pempeit, Director of Community Development at the Canadian Paraplegic Association (Alberta) and founder and president of Creekside Support Services.

SAIL (Supports for Artspace Independent Living Inc.) is a program for Artspace members who have disabilities and need personal care assistance. “SAIL Inc. is a consumer driven, self-directed model of homecare,” explains Sheila Walker, a quadriplegic who uses a wheelchair. “It is managed by a volunteer Board of Directors directly responsible for hiring, training, evaluating, and firing staff.”

This Board maintains a healthy relationship with AHS with whom they negotiate funding contracts based on client care needs.”

What makes the SAIL model of care

unique is that user-members direct their own care. Two other user run homecare ser vice providers exist in Edmonton: Abby Road Housing Co-operative and Creekside Support Services.

“Every client who lives in the Artspace Co-op and is a user-member of SAIL is responsible for directing the staff as to how best to meet their needs,” Walker continues. It is the user-member who trains the staff as to how their personal care needs should be met. The user-member is responsible for making sure they get their medication. The user-member has a say as to when their care time is scheduled. And the user-member lives in their own apartment, no matter what their level of care is.

“W hen I moved to Artspace, I was delighted to learn about SAIL. It is a small homecare service with staff on site 24/7 and it has been successfully running for about 24 years. I was assessed and assigned approximately three hours a week for homemaking, laundry, and some personal care. But the best part was learning about the on-call service. Now if I had an emergency, or just needed help carrying groceries, all I had to do was pick up the phone and ask for help,” says Walker. However, since May 7, 2014, SAIL staff has been on strike. Many Artspace members now refer to their home as being under siege as strikers picket outside their building.

Since the strike, “Sleep has become very difficult,” says Elizabeth Forman, who has Cerebral Palsy. Forman has lived at Artspace for 21 years. “I find I am waking up several times a night just thinking negatively about our situation. Every morning I’m wondering “will I get up [out of bed] today” because the strikers hold everyone up. It is a constant worry. My whole demeanor has changed for the worse, and that is not a good thing.

I have fought my entire life to maintain my independence. There is NO WAY I’m going to give that up!

“My friends are far more affected by this strike because several individuals have PTSD

and other mental health issues. I worry for them,” Forman states. “The picketers have turned our peaceful block into a very stressful situation.”

“Alberta Health Services provides funding to SAIL based on the assessed care needs of the clients,” explains Walker, “and AHS provides monies based on those assessed hours. In their contract with SAIL, AHS provides a certain amount of dollars, again based on the assessed care needs. From that total, SAIL has to meet ALL of their financial obligations. These include rent, overhead, supplies, etc., as well as wages.” SAIL affirms that there simply is not enough money in the budget to meet the demands of the striking workers.

It is vital that the independent model of care exhibited at Artspace continues to exist. “You have full control of who provides the care for you,” declares Pempeit. “In the case of a larger [healthcare] company, that isn’t onsite or basically has other people that they’re accountable to – like the shareholders and owners – the needs of the individuals are somewhat secondary, I think.”

“It’s not that they don’t provide good care, mind you. But, when you are the person that’s getting the care you have a personal stake in it. You have some influence when you get up, when you go to bed, when you get help. And the whole thing is about independence.”

“I don’t know what the solution is, but I am fearful of losing my independence. You may remember that I stated at the beginning that my scheduled care is only in homemaking.

Unfortunately, the sad reality is my abilities are becoming less, and one day I just may need more care.” Walker concludes.

Please visit: artspaceundersiege.blogspot.ca

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Thank You Gala Dinner and Awards Ceremony - Thursday, March 13, 2014

Shining Star Award Bryce Clarke (centre) presented with award by Honourary Patrons Laurie & Judy Hawn

Gary McPherson Lifetime Achievement Award Louise Taylor (centre) presented with award

by Valerie & Keiko McPherson

Percy Wickman Accessibility Award Edmonton International Airport Darlene Lennie (centre) receives award on behalf of MĂŠtis Capital Housing Corporation presented by Ceira and Jayden Wickman

Honourable Lois Hole Community Development Award Robert (Bob) Macklon (L) presented with award by Jim Hole

Gala Sponsor

5 Star Sponsors

Door Raffle Sponsors

Stage Production

Media

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4 Star Sponsors

Volunteer Sponsors

Decor Sponsor

2 Star Sponsor

3 Star Sponsor

Wine & Beverage Sponsor

Gala Software Sponsor

Special Item Sponsors

Print Sponsor

Official Photographer

meetthestaff

STAFF PROFILES ZAHRA BHATIA

Za hra has worked in the non-profit industr y for over 10 yea rs a nd joined the CPA (A lber t a) Ca lga r y tea m i n Ju ne 2011. W it h her backg rou nd i n Socia l Work and Disability Studies, Zahra loves her work as a Community Access Coordinator where she helps individuals living in long term care to engage in community activities. Zahra was identified as a team leader within the first year of her employment with CPA (Alberta) and is currently Manager of Programs and Services in Calgary. “From working with children to seniors and no matter of age, gender or disability, the importance is quality of life and how we can effectively reach out to individuals to reduce isolation. Making positive changes is not only rewarding but valuable to CPA as a whole�. In her spare time, Zahra spends quality time with family and friends and loves being outdoors, rain or shine!

KRISTIE COULOMBE Kristie started as a contractor with CPA (Alberta), leading a homecare task team under the Alberta Spinal Cord Injury Strategy in 2010. In June of 2013, she took on a new role as the Community Access Coordinator for the Community Access for People in Continuing Care program. Kristie enjoys coordinating this program, because it takes her back to her educational background in Recreation Administration and Community Building. Kristie says that seeing people in long term facilities increase their quality of life by enabling them to access the community is very rewarding work for her. In her free time, Kristie loves to spend time with her husband and their two children.

inourlibrary

Accessibility Architecture - A Visit From Pops

C

ongratulations to our good fr iend Ron Wickma n, well known accessibility architect, who launched his new children's book, "Accessible Architecture: A Visit from Pops" on March 18th, 2014. This book demonstrates the three principles for ensuring a house can be visited and enjoyed

by everyone equally, including those with a disability. Visitability principles include: the front entrance must have no steps; all main floor doors must be at least 36" wide and an accessible washroom must be on the entrance floor. Published by Gemma G. Publishing, you can pick up a copy at Audrey's Books in Edmonton!

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inmemoriam

REMEMBERING MARLIN

MARLIN ERNIE STYNER February 25, 1963 – February 28, 2014

M

arlin Styner, a long-time advocate for persons w ith disabilities, valued member of our communit y, past CPA (Alberta) employee, and founder of the Red Deer Charity Golf Tournament, passed away at the age of 51. Born in Edmonton on February 25, 1963, to Roy and Nora Styner, Marlin grew up in Red Deer and graduated from Lindsay Thurber Comprehensive High School in 1981. With visions of entering college in the fall of ’81, Marlin was in a car crash and

sustained a serious spinal cord injury.

Marlin was not one to accept charity without giving back, so as a quadriplegic, he beca me a n av id volu nteer, a nd t h roug h encou ra g ement f rom h is mentors, embarked on a career in public speaking. He served on numerous boards of directors, task forces, advisory boards and committees - locally in Red Deer as well as provincially and nationally.

After volunteering for a number of years on the Board of Directors of CPA (Alberta), Marlin was offered a staff position in the areas of Community Development, Government Relations and Advocacy which he held until September 2008. During that time Marlin became par ticularly interested in universal design and barrier free access and served as a consultant on a number of occasions thereafter. A member of the Premier’s Council on the Status of Persons with Disabilities since 2005, Marlin was soon appointed Chair in July 2008, where he worked until his health took a turn for the worse in 2011.

Marlin was a sports fan, enjoyed spending time with family and friends, playing cards and games, travelling, reading, music, singing, dancing, sailing, writing, and of course, public speaking.

He had a great sense of humor and at one particular staff event, showed up wearing a pink bunny suit!

He took a n ex t reme i nterest i n promoting the message that “90% of all

injuries are predictable and preventable”.

He always told people, “A person in a wheelchair is just that - a person - they’re just in a wheelchair. We have the same hopes, dreams, fears, drives, and desires as everyone else.”

Marlin’s life was very fulfilling and he always took time to “smell the roses”.

He will be lovingly remembered by his devoted wife of 11 years and best friend, Diane Gramlich, as well as his loving family and a wealth of friends.

In recognition of Marlin Styner’s dedication and passion for his community, CPA (Alberta) renamed the Red Deer Golf Classic the Marlin Styner Memorial Golf Classic.

IN MEMORIAMS Bruce Alexander Calgary Bob Barraclough Edmonton Keith Elliott Wainwright Tom Frances Dawson Creek Misty Franklin Edmonton Gordon Hay Edmonton Don Henderson Calgary Patty Olson Edmonton Nicola Polesello Calgary Iris Saunders Edmonton Marlin Styner Red Deer Robin Sutherland Demmit Clancy White Grande Prairie

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activeliving

STORM CHASING

by Kuen Tang

A

ny day a quadriplegic like me gets to hike up a mountain is a great day! On this particular day, the sky was partly cloudy, the fresh mountain air smelled like a garden of lilies and I was as excited as if I was having a birthday party. I was transferred into a TrailRider and my companions (aka sherpas) gathered for a quick meeting.

“It might rain” Jamie, our leader and guide from Rocky Mountain Adaptive Center warned us. “Then let it rain.” We all laughed.

The trip up to Chester Lake in Canmore, Alberta was a gentle elevation and smooth ride. As we hit the mid-point of our trip and as we were all laughing at some cheesy jokes, a loud thunderous noise could be heard from the distance. We looked behind to see dark clouds amassing with only a few streams of sunlight seeping through. We paused briefly, laughed a little nervously and continued forward. A flash of bright lightning paused our journey briefly as we looked behind us again. The dark clouds now covered most of the sky and lightning flashed, like Zeus had accidentally dropped a bucket of his lightning rods.

“Oooo” I laughed, “I feel like Frodo (from Lord of The Rings) and I’m about to face my doom in Mordor!!” It was too late to turn back so we forged ahead towards Chester Lake at a faster pace, in a hopeful “maybe the storm will pass us” frame of mind.

Rain started to pour as we approached Chester Lake but my friend Matt managed to sneak a few quick pictures of us before the storm was on top of us.

“No worries.” I assured everyone “If I get hit by lightning, maybe I will get up and walk and discover the cure for spinal cord injury!” Everyone laughed.

There was another loud boom and crash as my companions lifted me under a tree for shelter and moved the “all metal” trail rider far away from us. The noise continued as rain jackets, hats and rain gear went on. The storm danced around and then covered us as we reached our destination.

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The storm at Chester Lake was...exciting, gorgeous, awesome, refreshing! These words can only begin to describe the feeling I had as I sat about two feet from the lake and a few kilometers from three mountains that surrounded the lake. All the while accompanied by the occasional lightning show above us and thunderous booms!

Then, like something out of a dream, as the rain got stronger, waterfalls started to form on the mountains surrounding us.

Thirty smaller waterfalls became fifteen larger ones which t hen beca me t h ree big ones...what a sight!! The size of my smile tells it all. I was on a mountain, in the middle of a storm!!

How many quadriplegics w i ll exper ience t h is in their lifetime? I felt honored. Even though my compa n ions were st i l l fearful for my safety, we all agreed after that this was the best hiking “disaster” ever!!!

We were chased by the storm that day but we Kuen Tang and friends on their hiking adventure. experienced the magic of Mother Nature with laughter and smiles. Our positive attitude saved us from potential fear and panic and we turned ‘disaster’ into a wonderful experience.

We all experience storms in our lives. It’s how you face it and your attitude that determines whether you become a victim or a survivor. I challenge you to try something new! Try to face the “storms” in your life as we did, with a smile and positive attitude and you may find that instead of being chased by a storm, you too can become a ‘storm chaser’!

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feature

HIGH HOPES Will marijuana be the new super-drug for pain sufferers?

K

rista has a constant companion.

That may sound like a good thing, but it isn’t. Krista’s constant companion is pain.

“There’s no words to describe it,” she says, “it’s everywhere I’m paralyzed. The only place I don’t have pain is in my head and neck.” Krista has high level quadriplegia.

Without proper pain management, she’s unable to function. Even with the proper medication, her compa nion g reets her ever y morning when she wakes. “I can remember three days in the last ten years when I have woken up pain free. It brought me to tears. I still remember those days.”

T h at k i nd of pa i n is wh at d r ives ma ny people to tr y just about a ny t h i ng to ease t he su ffer i ng.

Ma ny a re tu r n i ng to ma r ijua na.

Marijuana is one substance that has long been recognized for its ability to relieve physical and even mental disorders. The Chinese, Eg y ptia ns, India ns, Greeks, and Arabs used it thousands of years ago to treat ailments such as constipation, insomnia and rheumatism. While there

16

by Heather Lissel is now scientific evidence of the health benefits of marijuana, the jury remains out on whether or not it is truly effective, in what form it is most effective (pill, smoked, ingested or vapour ized), a nd i f t he b enef it s out w eig h t he r is k s.

The recreational use of marijuana was criminalized in Canada in 1923, but you can be prescribed medications which contain either a natural or synthetic form of the key chemical (THC) that provides most of the medicinal b enef it s. E ven t o d ay, actua l ma r ijua na (the leaves, stems or buds) h as not been

approved as a therapeutic product, but in 2001 the Government of Canada made it legal for people to possess and grow small amounts for their own use, provided they were approved under Health Canada’s Marihuana Medical Access Reg ulations (MMAR).

In order to be approved, people had to obtain a declaration of support from a doctor and complete a lot of paperwork (it’s government, right?). Once approved you had a choice whether to grow your own, purchase the product from Health Canada, or buy it from another “designated” grower.

T he law h as recent ly ch a nged.

Underst a ndably, t here were concer ns about the safety of home-based growing operations and whether the marijuana produced was being sold legally. The cost

of the product purchased through Health Ca nada was a lso heav ily subsid i zed.

And with the estimated number of users expected to top 450,000 by 2024, the Government was faced with spending a lot of money both on purchasing the product and on processing the paperwork for the thousands of users and licensed providers.

The new law, called the Marihuana for Medical Purposes Regulations (MMPR) took effect on April 1, 2014. Under it, the government will no longer sell marijuana, nor will you be allowed to grow it yourself.

Instead, you will need to get approval from a doctor or nurse practitioner and purchase it from a licensed producer. Producers will be regulated by the Federal Government and their product will have to meet standards for qua lity a nd sa fety. The MMPR is currently being challenged in the courts.

In the interim, Health Canada has granted an extension for people who were approved to g row a nd /or use the product under the old regulations to continue to do so.

People who use m a r iju a n a for medica l pur poses a re concer ned t hat t he new process w ill ma ke it ha rder t o g e t a nd t h a t i t w i l l c o s t mo r e.

Whereas Health Canada charged $5 per gram, private producers are expected to charge as much as $12 a gram. People who relied on “compassion clubs” that d ist r ibuted ma r iju a na at a ver y low cost may no longer have t hat option, unless the club has a license to produce.

The prescr iption system a lso puts more pressure on physicians. Prior to the change, they only needed to provide their patients with a “statement of support.”

Now many feel they are being asked to essent ia l ly prescr ibe a product t h at they may not know much about. Both the Canadian Medical Association and the Federation of Medica l Reg ulator y Author ities of Ca nada a re concer ned.

They say there isn’t enough scientific evidence to prove marijuana is an effective

feature me d ic i ne a nd t h a t d o c t or s d o no t h av e enou g h information on when to prescribe it, what dosage to give, or what the possible side effects might be.

While there’s a growing body of evidence that marijuana can be effective in treating pain and muscle spasms in people with neurological conditions (like spinal cord injury and multiple sclerosis) it’s not likely to become a super-drug – at least not any time soon. Krista tried pill form about five years ago. Unfortunately it didn’t work. “I think maybe it was too weak,” she says. “When I’ve smoked it - just with my friend - it seemed to help.” Pot promoters would say that this is because “raw” marijuana contains over 60 different cannabinoids (chemicals that act on certain receptors in your brain to produce some good, and some not so good effects).

The pill form (or mouth spray) distills that down to just a few.

Whether you smoke it, inhale it as a vapour, eat it, or swallow it as a pill, there’s always the chance that marijuana might interact with other drugs you may be taking, it might be habit-forming, and it might have side effects you can’t live with.

Cynics say that the new law is going to be a cashcow for commercial marijuana growers who are quick to get in the game. There are many who hope that the government’s next move will be to decriminalize marijuana altogether. If that happens we could well see the next generation of Seagrams and Rothmans. So whether you are someone with SCI looking for relief from chronic pain, or someone who plans on investing in a new business venture, there may be reasons to have “high” hopes.

These are the steps outlined by Health Canada, which you must follow to obtain marijuana for medical purposes.

• •

•

Consult with a health practitioner (a doctor or nurse practitioner).

Obtain a medical document completed by the practitioner who will determine the amount you can use and how long you can take it.

Submit the paperwork to a licenced producer of your choice. The producer will ship the dried marijuana directly to you.

For more information, visit www.hc-gc.ca and search “marihuana steps”.

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feature

HOSPITALIZATION A LONG WORD THAT PACKS A BIG PUNCH

S

ooner or later, most of us will have at least one hospital stay in our lives.

The chances are even greater if you have a spinal cord injury (SCI). One Canadian study found that people with SCI were hospitalized nearly three times more often than those without an SCI. Nearly 60% of people with SCI will be rehospitalized within six years of their injury for a variety of reasons, including urinary tract infection, pneumonia, depression and pressure ulcers.

Though most hospital stays are short, some can last for weeks or months. When that happens, how do you and those around you (your family members and friends) cope? Aaron Venance and Diane Gramlich are two Albertans who have experienced extended hospitalization f rom t wo d i f ferent sides of t he fence.

Aaron lives with SCI and spent nearly ten years bouncing from home to hospital. His longest stay was at the Grey Nuns where he was admitted for a urinary tract infection and pressure ulcers. He ended up spending 1 ½ years there, waiting for appropriate housing that would meet his needs for in-home care.

Diane’s husband, Marlin Styner, a high-level quadriplegic since 1981, was hospitalized in Red Deer from fall 2010 to July 2013 after he suffered numerous health problems including multiple

20

by Heather Lissel organ failure, pressure ulcers and seizures. At the time of his passing, he lived at the Carewest Dr. Vernon Fanning Care Centre in Calgary, as part of their Chronic Complex Care Program.

Their experiences reveal a number of things that can help others find a way to actually have some semblance of a life while in hospital.

Aaron, who has quadriplegia, describes himself as a pretty easy going guy who just takes things as they come. For the most part, that helped him cope, but there were still some very difficult times. The hardest time came when he was t ra nsfer red to a palliative care unit in an auxiliary hospit a l because he was advised he could no longer take up a bed in a c ut e c a r e. “ No w that was depressing,” he says. His most vivid memor y is of the smell of the place.

Even there, though, he tried to make the best of it by joining a young adult group in the facility. “It was just me and one other guy and some 50 something woman,” he jokes. He definitely doesn’t dwell

on the negatives, and brings a humourous spin to his memories of being in hospital.

His sense of humour helped him cope with his sometimes depressing circumstances. “There was an old guy who wandered everywhere [in the facility] and he would steal people’s slippers and then pee on them. They [the staff] had three loads of slippers going [in the laundry] sometimes.” He smiles, saying “I’d hide my shoes.” He also recalls how he’d name other patients whose real names he didn’t know. “I gave them names, like ‘Pole’ [because he walked around with an intravenous pole] or I’d say ‘There goes Leg’ [because he only had one leg].”

Diane Gramlich can also attest to the importance of a sense of humour. She shares how Marlin’s sense of humour kept her spirits up. “I made an appointment for Marlin to see the dental hygienist and when I told him the day, he said ‘I won’t be there… and neither will my teeth!’” Many times a nurse would have to leave him for a moment to retrieve something. Marlin would say, tongue-in-cheek, “OK, I’ll wait here.” These are just examples of how Marlin maintained a positive attitude throughout his life.

There are times though, when having a sense of humour is not enough. “I wear my heart

feature on my sleeve. I never said sorry for crying.” to put her trust in them for Marlin’s care.

The experiences of others Diane’s honesty about her feelings no doubt Both Aaron and Diane would likely agree hold valuable advice. Some helped to deepen her relationships with friends that trust, hope and the ability to live one day things to keep in mind when and family who have been a big support to her. at a time are key to surviving a long hospital facing a long hospital stay: While she would have liked to have more stay. “I decided to put it [my illness] out of people come by to spend time with Marlin, my mind and go with it,” says Aaron – it’s a • Don’t sit still. As much as possible, move she u nderstood t h at people cou ld be philosophy that he still holds, even though he’s around the hospital. Take part in groups or uncomfortable. In Marlin’s case, his memory no longer in hospital and his life has improved activities if they are available and if you can. and ability to communicate were affected in many ways. Diane shares, “Marlin taught • Stay connected to the outside world. Talk by the seizures, and that me patience, communication to other people. Use a computer with internet ‘Both Aaron and and how to ta ke things access if you can. made it even more difficult.

Diane would likely one step at a time…I’m • Get to know hospital staff. Let them get to To compensate, Diane agree that trust, offered to go w ith those not big into religion but know you. hope and the people to share in the visit.

I wou ld say a hopef u l • Trust and respect hospital staff, but be ability to live one prayer ever y mor n i ng. clear that you know yourself best. Many will She often had to deal with day at a time are O n c e M a r l i n s e t t l e d appreciate your suggestions and insights if you their relucta nce. “Some key to surviving a into his new home at the communicate them clearly and respectfully. wou ld say ‘I don’t l i ke long hospital stay.’ Fanning Centre, she was Follow up if a staff person isn’t following through hospitals. I’ll see him when he gets out.’” They didn’t hopeful that their lives on something they’ve promised you. always understand the extent of Marlin’s would return a bit more to normal. “I was • Stay organized. Record, or have someone health issues and that it might be a long looking forward to Marlin being able to get record for you, the details of discussions you have time, if ever, until he retur ned home. up in his wheelchair every day, dressed. He with hospital staff.

Which points to another important coping had a wider bed at the Fanning Centre that • Tell your family and friends what you need. strategy: the ability to make hospital more gave me the freedom to just lay beside him Many of them won’t know what would be helpful, like home. “Marlin’s parents and I made in bed – the first time in over two years.” so tell them. crafty, eye-catching, hanging decorations Talking to Aaron and Diane leaves you • Keep people updated. If you haven’t heard from for Marlin’s hospital room. Not only did they with a sense that while hospitalization is someone in a while, reach out to them. Let them provide a sense of warmth and hominess, never easy, it can be bearable. They are two know how you are doing. You might be surprised but they helped Marlin to be aware of the ordinary people who have learned how to make as to who will respond. seasons and special days to celebrate.” it through difficult times. Their willingness • Take care of yourself. Eat proper meals and “I’d save things,” says Aaron. “I lost to share what they’ve learned, in order to get exercise wherever, whenever, and however everything [when I was injured] and so I help others, makes them truly exceptional. you can. started collecting things. I’d keep flowers Heather Lissel is a freelance writer and project • Know that there will be an end. You may not until they were dead and falling apart.” When co o rdi n a t o r i n Sh e r wo o d Pa rk , Al b e r ta . know when it will end, but eventually it will. it was time for him to leave, the staff “wanted Sh e ca n b e re a ch e d a t h li s s e l @ t e l u s . n e t .

You want to keep up your relationships and your to see me go but they were showering me Note: Preparation for this article took place in the emotional and physical strength as much as with gifts…I was almost like their kid.” fall of 2013. On February 28, 2014, Marlin Styner possible to prepare you for the time when you Diane and Marlin also developed strong passed away. At CPA (Alberta), we are saddened by may need rehabilitating and readjusting once relationships with hospital staff. “I was there the loss but proud to have been able to play a small you are discharged. so often that some staff thought I worked part in sharing Marlin’s life. An “In Memoriam there!” Diane says. “We were very clear that to Marlin Styner” is included in this issue. we needed to work with the system. I did things that [some] staff couldn’t do because they have to follow [hospital rules]. “I didn’t work and was able to dedicate as much time to Marlin as I wanted.” She showed the respiratory technicians how to do a technique she and Marlin called “reverse bagging” to help him cough. “Marlin suggested it,” she says. “I did up care plan pages…with things he liked…and put them on the walls so that all the staff could see…I was proactive in Marlin’s care. I was his advocate. I have an eye for detail and I knew what Marlin needed.”

At the same time, she knew she wasn’t Marlin and his wife Diane enjoying the sun in the rooftop gardens at the Fanning Center. staff and when she wasn’t there she had

21

motivation

CHANGING

PERSPECTIVES

by Vahen King

R

ed hair, freckles, and personality to match! I was a little girl who spoke her mind a nd a lways seemed to attract attention; good or bad, it was all the same in my young mind. When I was in grade one, there was an outbreak of lice at my school. Being only five years old, I didn’t understand this wasn’t something anybody would want. The nurse called my mother and told her she had to come and get me immediately. By the time my mother arrived I had already joined my friends on the bus for the ride home. When I saw her, I stood to my feet and, with my arm stretched high in the air, little fingers wrapped tightly around the bottle the nurse gave me, yelled, “Mom! I’ve got the crawlers!”

I was so thrilled to have been singled out for something. It wasn’t until my first year in college that I learned to think first and speak second—a most helpful communication skill!

My theology professor was expressing a view I did not believe to be true and, without thinking I passionately spoke my mind and stormed out of the class. How was I to know the door

22

would slam so loudly? Before it shut, I heard my professor say, “I’ll see you in my office later.” What a way to start my freshman year!

One year after graduating college, I received an engagement ring from the love of my life. I was overjoyed and filled with so much love and excitement; my life was perfect! Then things took a drastic turn and exactly one week after he put the ring on my finger, I was rushed to hospital. I was diagnosed with Transverse Myelitis, a condition that left me physically disabled and reliant on the use of a wheelchair for my everyday mobility.

Life as I knew it changed forever! I had to adapt to my life and surroundings as a “Person with a Disability”. Who I was as a person however, stayed exactly the same, and I still have fun and live life to the fullest.

From being a social butterfly in college, to being named “Smiles” in rehab, I was still attracting attention—positive attention in this case. I view my disability as an advantage, and changing people’s perspectives gives me great satisfaction.

I was sitting at my kitchen table one day, talking with my father-in-law who is a missionary. As I reflected on my life, I spoke about some of the amazing things I have had the opportunity to do as a result of my disability. I said, “I have always wanted to do something great with my life and show people that God’s love can shine even in the toughest of circumstances. It’s funny really, it wasn’t until I had to overcome adversity myself, that I was truly able to make that impact.” With that, my father in-law quickly responded, “So, want to go to Africa with me?” He thought it would be amazing to share my story with the African people, where the perspective, in many places is that if someone has a disability, their life is of no value. People with disabilities are sometimes cast aside from society or, in many cases, left to die. My fatherin-law felt they would be intrigued by a girl in a wheelchair who had so much joy. No manual or guide book could have prepared me for the many obstacles I was to face. What was even more mind-boggling was the overwhelming realization not only of the impact my presence

had on the African people, but of the impact the African people had on me. They looked at me and thought, “How can someone in a wheelchair be so happy?”, and I looked at them and thought, “Dear God, these people live in such poverty, yet they are happy and love with such intensity.” “Talk about different perspectives!” More about my trip to Africa can be found in the Summer 2012 issue of Spinal Columns.

Amazing opportunities have literally fallen into my lap, not because I have a disability, but because of the way I portray my disability. I no longer view myself as physically disabled, but physically ABLE. While it’s true I am an outgoing and energetic person who loves attention and have done some crazy things, I think I even surprised myself, when I impulsively volunteered to do ‘runway’ at the “Western Canadian Fashion Week” in Edmonton, Alberta this past winter. At the end of every show, the MC calls for audience volunteers to do their best runway walk.When I first heard the call, my heart started pounding in my chest. I really wanted to go, but thought, “I can’t do that, can I? I mean, I’m in a wheelchair, and I’ll probably look funny up there.” When no one jumped up, I quickly raised my hand and said, “I’ll go!” The MC looked at me and said, “You can do that?” “I sure can!” was my bold response.

Without hesitation, two of my friends lifted me onto the runway.

I fully committed to the experience and held nothing back. I thought, “In all those years of watching Top Model I must have learned something right?” Smiling with my whole body, down the runway I went. Making eye contact with a few people along the way gave me more confidence and I did a little twirl in my wheelchair. Then, upon reaching the end of the runway, I gave my best “I’m beautiful. Look at me!” pose.

This was one of the most memorable moments of my life and I have some great pictures to mark the occasion, thanks to one of the show’s photographers. Sometimes, the only thing standing in the way of a truly amazing experience is you. I challenge you to never let worries of what it might look like stand in your way. Change perspectives!

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23

accessibility

THE NEED FOR

INDEPEDENCE

by Ron Wickman

My mom and dad, Percy Wickman (later elected City of Edmonton Councillor), perform a publicity stunt, using a car jack to illustrate the inaccessibility of Edmonton City Hall in the early 1970’s.

T

he theme of this five part series is that we all have a need for independence. However, society’s va lues, bel iefs, a nd act ions often compromise our ability to achieve true independence. This is most evident when we think of persons with disabilities.

I understand this fact because I grew up with a parent who was disabled. I was four months old when my father was told he would never walk again. I did not consider this much during my childhood years, but my upbringing in a family with one of my parents in a wheelchair was indeed unique. This is what has always motivated me to practice architecture. My experiences have clearly revealed to me that my father, because he used a wheelchair for mobility, was afforded fewer choices than most other citizens for accessing services / amenities in the city we lived in and the cities we visited.

T he key word i n my def i n it ion of accessibility is choice. Accessibility simply means that all persons are afforded the choice for independent movement; that is that they can move freely about without assista nce. In essence, a n accessible environment is one that does not remind the individual that he/she has a disability.

I have come to realize that a space will only be truly beautiful when everyone can enjoy it in the same way. Designing a building, space, or object with the needs of everyone in mind is not just a technical issue, but a creative act that we must consider today, so that the future is better for everyone.

As architects and designers, we need to functionally reach the maximum audience through our designs. Until we consider how

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everyone uses our buildings and spaces, we are not meeting the full expectations of our job. When we maximize the true functional and emotional design potential in our projects, the result is usually deeply felt by both the user and the designer. This is architecture! This is architecture with value beyond artistic and creative vision. This is architecture with spirit and soul. I know that the key to moving the accessibility movement forward is education – individuals with

This image shows a curb ramp complete with a yellow tactile warning surface. This detectable warning surface provides a wayfinding cue for persons with low vision or who are blind.

disabilities are ordinary citizens who need to have the same choices for movement in the built environment as everyone else. I am old enough to have lived in Edmonton when there wasn’t a single curb cut anywhere. I remember my father’s reaction to comments that in the United States curb cuts were becoming commonplace. He felt that perhaps it was asking too much to have curb cuts everywhere in Edmonton. He would get up a curb from street level by getting his front wheels on the curb and grabbing a parking meter to pull himself up the rest of the way.

Changing attitudes, even among persons with disabilities, is slow to come. Today however, curb cuts, now known as curb ramps, are always built in when new sidewalks are poured. Now we all realize that curb ramps benefit persons with bicycles, baby strollers, and other carts. Attitudes and beliefs have changed. A design alteration that once was thought to benefit only a small population such as persons with disabilities actually benefits a large population at little to no extra cost.

Generally, attitudes in society are slow to change. However, when most people realize the benefits of change in safety and health, it can actually change rapidly. The best example I can think of is smoking laws.

When I was young, smoking was allowed everywhere, even on planes. Today, smoking is restricted to a few places, so the general public is not exposed to second hand smoke.

This change seemingly happened overnight.

Another good example of positive change where everyone benefits is the airport ramp.

The image shows ramps that are at least 4 meters wide and great for everyone, including people pushing strollers and pulling luggage, as well as for people who use wheelchairs.

One of the great inventions of recent times has been to put wheels on suitcases, sport bags, and other items. A result of this design innovation can be seen and used in newer airports around the world. Ramps inside these buildings have dramatically increased in width. No longer do we see wide stairs with narrowly built ramps, designed to meet the minimum width by the building code, off to the side. Ramps can often be four meters wide or more, and commonly replace the need for stairs altogether.

(Part 1 of a 5 part series)

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opinion

FROM MY PERSPECTIVE

by Larry Pempeit

O

ver the past year, I have been reading about multimillion dollar projects getting the “go-ahead”. It’s great to see this new sense of optimism. These projects will last well into the future and provide future generations with facilities that will make them proud to live in Alberta. I can only hope that as persons with disabilities we are able to share in this new optimism and that we have the opportunity to enjoy these facilities in the same way as others.

Let’s hope that these buildings are built with ALL citizens in mind. Let’s not have a repeat of the past where public facilities had to be renovated to meet the needs of people with disabilities because these designs were not included initially.

Some examples come to mind: the Saddledome in Calgary and Commonwealth Stadium and Rexall Place in Edmonton. These facilities have restricted seating to one area of their arenas. They also have limited seating, that doesn’t meet the needs of those wanting to attend events. This includes those inaccessible or marginally accessible box seats.

I believe some of the problem stems from architects and developers who overlook the needs of persons with disabilities. Quite often we are an afterthought and it ends up costing additional money to make accessibility renovations in the future. In this new era of enlightenment, let’s hope that people with disabilities are included in the early stages of development and are consulted all the way through to the finish. That means, the architects bring the plans forward to persons with disabilities and consult with them to see if their plans meets our needs.

The developer must also consult with us. Too often, they say things are going well and that they are following the plan, only to find out that they made many changes that limit our access. Their excuse is usually that we can’t go on the site because it isn’t safe and inaccessible. I think that’s bogus! There are plenty of people without disabilities who could access the site and who are very knowledgeable about accessibility. Also, what about video cameras?

In many arenas in the United States there is ample seating throughout facilities and at various levels and price points. So it’s not like it can’t be done.

As well, those expensive box seats need to be accessible. Who’s to say that I don’t have money to rent one or that my friend has money and invites me to sit with them in the box seat?

Another answer I get all the time is “we meet the building code for accessibility”. Well that’s great! You have to meet the building code or it won’t get developed. If you want great design that will last for future generations, you need to “exceed” the building code. Building codes are always improving with every review.

While I think it’s developers and architects, etc. whose role it is to get development off the ground and completed, I think we, as persons with disabilities, have a role to play as well.

We need to be proactive about these projects. We need to get involved at the beginning stages to ensure our needs are met. When a project is first announced, individuals with disabilities and organizations who represent persons with disabilities, need to make them aware of our willingness to participate. If they’re not willing to listen, then we can mobilize to put pressure on them. It’s also our right to ask the organizations that represent us, what they are doing to monitor these new developments.

At least that’s my perspective.

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27

activeliving

MOTIVATION101

D

o you ever feel you lack motivation and drive? Sometimes I feel horribly lazy (especially during those long winter months just around the corner). I was walking through the underground tunnels that connect our Edmonton office with the Royal Alexandra Hospital and the Glenrose Rehabilitation Hospital when I bumped into one of our members wheeling through the tunnels. He explained that it`s a good place (other than a mall) to get a good workout, especially when it’s too hot or too cold. I was impressed to say the least, and it got me thinking about what I, and others can do to beef up our motivation to stay active. I`ve compiled a list of 13 tips to help keep you motivated. My suggestion? Pick 2-3 tips you feel you can realistically implement and try them for a few weeks. If those work to keep you motivated then great! If not, chose 2-3 different tips, try those for a few weeks, and keep this rotation until you find a combination that works for you!

1. KEEP IT SIMPLE The more things that need to fall into place, the more likely we are to find a reason not to be active. So make it as simple as possible.

Visit a venue close to your home, and if it doesn`t have a gym, take a page from the book of our “tunnel wheeler” and wheel anywhere that has a lot of indoor space (a mall, the tunnels, indoor track, or better yet, be active in your own home). Wheel around your house for 2-3 minutes or more, several times a day. Then do a short workout with workout bands and weights (items you can find around your home that can take the place of weights, ie. water bottles filled with water, sand or rocks, cans of soup etc.).

2. MAKE IT CUMULATIVE Building on the above, remember that exercise is cumulative. EVERY LITTLE BIT COUNTS. Think of your body like that messy closet you don`t want to tackle. Commit 10 minutes a day to cleaning it, and in a week or two, it will be neat and tidy, and you won’t feel overwhelmed. Exercise works the same.

Work yourself up to 10 minutes of any activity 3 times a day and you’ll find the goal much easier to manage. Many lifestyle activities count as exercise as well, like walking and wheeling, some forms of cleaning, playing with your kids...basically anything that gets your blood pumping!

3.FIGURE OUT WHAT WORKS FOR YOU If you find you’re motivated in the summer, think about what created that motivation: Targets? Goals? Friends? Competition? The great outdoors? Tap into that driving force

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and the feeling it creates and replicate it when you need it.

4. BE CONSISTENT Set a regular time to be active and stick to it. It doesn’t matter where you’re being active as long as it’s the same time every day.

5. BE ORGANIZED Put it in your calendar and set a daily alarm so you don’t ‘forget’.

6. KEEP A JOURNAL Logging how you feel during your workout helps to remind you how st ress free, hea lthy a nd proud you feel a fter your activity. Use this to give you the little extra push you might need to get going.

7. POST ON SOCIAL MEDIA I’m not sure how I feel about this one, but it works for some. If you like to share your successes with your followers/ friends/fans or if you like to ‘check in’ to various places you visit, then this is for you. Checking into the gym, or posting about your workout or training session keeps you accountable in a very public way, which can be motivating for a lot of people.

8. BUY NEW (OR USED) GEAR Having a new workout outfit, fitness watch, or add-on for your active equipment of choice (bike, ski, sled, etc.) might help keep you motivated and encouraged to get out there and use it!

9. DRESS THE PART There is nothing worse than being cold, wet and chilled or too hot. Ma ke sure you have the right gear, whether it’s to get you to your exercise venue of choice comfortably or for participation in the great outdoors. Be comfortable and play it safe!

by Amy Mackinnon

10. CREATE YOUR OWN CHALLENGE Pick an activity and do it for 30 days. Once those 30 days are up, the theory is that what you’ve been doing will become a habit and it will no longer be so difficult to do.

This can be as simple as drinking a certain amount of water per day, or wheeling or m e d i t a t i n g f o r 10 m i n u t e s a d a y.

11. MAKE A FITNESS GOAL A challenge can get you started being healthy and active so that you can move towards a fitness goal. This can be anything from being more independent in your daily activities (washroom, dressing, wheeling up that hill in your neighbourhood), to participating in a fitness event or competition (a 5, 10 or 20 km wheel ∕cycle or a local triathlon). Choose a goal that is realistic for you but that you actually want to achieve, so you can stay motivated.

12. TUNE YOUR ALARM I nstead of a n a n noy i ng a la r m clock, maybe use your iPod or similar device to play specific songs that get you up in the morning. Anything that lifts your mood and energy will do wonders to get you going.

13. FIND A FRIEND F i nd someone you ca n work out w it h or someone who can keep you motivated.

Build your goals together and if you aren’t working out together, keep each other on track by communicating regularly to ensure you’re both being active each day.

In the end you have to use strateg ies that work for you. So if you didn’t find something here that w ill work for you, sta r t thinking about things that w ill.

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travel

MY DESTINATION OF CHOICE

By Larry Pempeit

B

ecause I have traveled to a number of places over the past 15 years, people often ask me why I go to some places more than others. My response is, accessibility, accessibility, accessibility.

Probably my favorite place to visit is San Diego, California. I have been there five times over the last six years.

What keeps me going back is accessibility to transportation, accommodation, facilities, entertainment and a large number of things to keep me occupied.

Because I no longer drive, I a m dependent on public t r a n s p o r t a t io n a nd t ou r operators. And transportation in Sa n Diego is fa ntastic!

Light Rail Transit takes you a ll through the dow ntow n a rea , dow n to T iju a na , Mexico and back up to Santee (Northeast San Diego). It is totally accessible, the fare is reasonable and there is a special fare that you can apply for at the transit office for persons with disabilities. Buses are all low floor and maintain their schedules. I usually buy a five day pass that allows me to take all the transit lines. There are no wheelchair taxis that I could find. The supershuttle, which must be pre-booked, also is lift equipped and will take you directly to your hotel and then later back to the airport. Amtrak also stops right at Central Station. This national railway carrier is very accessible and travels all the way to Los Angeles and north.

Tour buses are often accessible. The ferries are also accessible.

Hotel accommodation is quite good. Almost all comply with the Americans with Disabilities (ADA) standards.

My advice however, would be to do additional checking through the internet and various accessibility guides. My recommendation is to stay downtown, close to transit.

30

For me, weather is another important factor in having a great vacation. Winter temperatures are typically around 22°C, and in the summer 26°C. Evenings are cool, especially on, or near the water. I found that all the facilities that I would want to visit are very accessible. Many of these places are only a short bus or LRT ride from the city core. If you’re interested in sports, all stadiums are accessible by transit and provide great seating. San Diego has the Padres (baseball) and the Chargers (football).

One of my favorite spots is Balboa Park. Easily accessible by bus, the park contains 15 major museums or galleries.

Some of these include: Museum of Photography, Ripley’s Believe It or Not, Motor Vehicles Museum, Sports Museum, Natural History Museum, Children’s Museum, etc. It took me over two days to see it all. There is an accessible tra m ava ilable to ta ke you around the park.

Adjacent to Balboa is a large outdoor cactus display. It has hundreds of various cactuses that grow all over the world.

There is also a large rose garden next to the cactus exhibit. All are very accessible. Next to Balboa Park is the picturesque San Diego Zoo. This is a major zoo and rivals the Calgary Zoo for the number of animals and displays. There are a number of steep hills within the zoo. Old town San Diego is just a short ride on the LRT. It includes many historical dwellings and historical information. Many restaurants and pubs, mostly Mexican, are along the main boulevard and most buildings have ramps and are accessible. Seaworld, which is a short bus ride from Old Town, is something you don’t want to miss. It provides you with the opportunity to see many sea creatures. There is a shark exhibit, as well as an area where killer whales get to perform and get the

travel audience wet! They have a number of shows where sea creatures perform for the enjoyment of visitors. The Gaslamp area is right downtown and is the place to go for good food and a fantastic patio experience. Adjacent to it is Westfield Horton Plaza, which includes major stores like Macy’s. Of course, when you go to the United States, you think of shopping and in San Diego there are lots of opportunities to shop. To get to the designer discount mall you take a short ride on the LRT to the Mexican border.

Once there, you take a low floor bus to the discount mall which takes approximately 10 minutes. Here you’ll find all the designer companies such as Coach, Christian Dior, Nautica, Bose, etc.

These are mainly single outdoor stores, so it can be quite hot.

San Diego has even more to offer, including the Maritime Museum, Harbor Tour, Wild Animal Park, Birsh Aquarium, Coronado Island, the Bay Walk, numerous beaches, ethnic areas and provides easy access to Legoland, Disneyland and other attractions up the coast.

To get to San Diego there are direct flights from Calgary via WestJet. From Edmonton, you need to transfer in Calgary, Vancouver or Seattle. Because I prefer direct flights, I take the Red Arrow to the Calgary International Airport and spend one night at the Delta Airport Hotel before departing the next day.

When I return, I can usually make the connection in Calgary for the Red Arrow bus line to Edmonton on the same day. The Red Arrow is very accessible, and your attendant, if you have one, rides free.

For “Travelling Larry”, San Diego is a great destination!

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31

i nnovations

BRINGING TETRA HOME TO EDMONTON

By Brittney Neunzig

T

he Edmonton Chapter of the Tetra Society of North America is turning a new leaf, and as the new coordinator, I am excited to be at the forefront of its development.

This organization, founded by quadriplegic Sam Sullivan, in 1987, aims to help those with disabilities live the most independent and fulfilling lives possible. Based on the philosophy that people are not limited by their disability but by obstacles in their environment, the Tetra Society brings together ‘inventors’ and clients to find solutions to their everyday problems in daily living, recreation, work environment, etc. The client is any person with a disability who, facing an obstacle, cannot find solutions in any existing commercially available product. The ‘inventor’ is any skilled individual willing to volunteer his or her time and talent. Together, the clients and volunteers create custom assistive devices to achieve success.

From its grass roots, in the basement of the G.F. Strong Rehabilitation Centre in Vancouver, to its current standing as an international organization with 40 chapters and 250 volunteers, who complete 200 projects a year, the Tetra Society of North America continues to change the lives of people with disabilities.

My introduction to Tetra and my subsequent journey to the position of coordinator for the Edmonton chapter was, like others with disabilities, started because I was looking for a solution to a barrier in my own life.

As a paraplegic since 1999, I have been no stranger to facing obstacles in my daily life. Paralyzed from the chest down, I have made use of many assistive devices in order to live independently and until 2008, was able to find everything I needed among the array of commercially available products at home health stores.

In February 2008, I became pregnant with my first child. At that time I was thrust into the role of not only mother, but mother with a disability. I began searching for products that would allow me to care for my baby from my wheelchair and quickly realized that there were limited wheelchair friendly baby care items in the marketplace.

With the understanding that I would have to modify equipment to meet my needs, I began researching ways to make that possible. As part of my search for information I learned of the Tetra Society and contacted the foundation, only to find out that the Edmonton chapter, while established, lacked volunteer support and could not help me.

32

Being part of a very large and supportive family, I turned to them to find solutions for my obstacles as a new parent. Working with an uncle, my husband and I got a custom designed crib and we adapted or modified other equipment when necessary.

After the birth of my second child, I felt compelled to share my story with others who might be in search of information on parenting from a wheelchair. I reached out to the Canadian Paraplegic Association (Alberta) in Edmonton and together we created a video detailing my experiences as a parent (www.youtube.com/ user/cpaalberta). Since that time, I have been approached by other disabled parents-to-be for advice and/or resources and though I have been delighted to share my ideas, I wanted to do more.

It was my hope to put together a network of resources, information, and products to help those with disabilities become independent, successful parents. As part of my research, I was reminded of the Tetra Society and wanted to learn more about how the organization could help with my initiative. I soon realized what a great resource Tetra would be, not only for parents with disabilities, but for the disability community in the Edmonton area as a whole. I had hoped that in the time since my first pregnancy, the Edmonton chapter had garnered more support, but learned that it was still not active. I wanted to change that so I contacted the organization and took the position of coordinator.

This is such an amazing opportunity for the city of Edmonton to follow in the footsteps of so many thriving chapters of Tetra across North America. I’m excited to bring together the volunteers I know Edmonton has to offer and start spreading the word to those who would benefit. In the few months since the chapter has opened, I have been busy talking with various disability organizations, and have started recruited “inventors” who are excited to begin helping those in need.

If you are a skilled individual and want to put your talents to good use, we need your help. If you are a person with a disability and have an obstacle that is preventing you from living your life as independently as possible, we want to hear from you. I am honored to be a part of such a wonderful organization and am looking forward to a successful future for Tetra Edmonton. Contact 587-286-2902 (phone), 587-286-0083 (fax), edmontontetrasociety@gmail.com.

i nnovations

Adaptive Products KITCHEN GADGETS

With just a few kitchen gadgets, many individuals with limited hand function can still enjoy whipping up a meal in the kitchen!

Marilyn Erho, CPA (Alberta) Peer and Special Events Coordinator demonstrates some kitchen gadgets that she has discovered that allow her to be more independent. Check out our video at www. youtube.com/user/cpaalberta/videos.

You can also find more cool gadgets for the kitchen at http://www.pattersonmedical.ca/app. aspx?cmd=searchResults&sk=kitchen http://diply.com/trendyjoe/useful-gadgets-for-homekitchen/50752/1

THE HANDS FREE DRYER This is the patented hair dryer that sets up on a countertop or table to leave both hands free for drying and styling. Created by a salon owner, the dryer’s ergonomic design eliminates the shoulder, neck, and arm strain often experienced with traditional handheld dryers. Its hands-free operation simplifies tricky styling tasks such as sectioning off hair at the back of the head or straightening it with a round brush. The dr yer’s 1,500-watt motor blows air vertically at a comfortable 50 mph with two heat and two speed settings, so hair dries quickly without being blown around too vigorously. The lightweight unit can also be picked up like a standard dryer. It comes with an accelerator attachment that cuts drying time in half and a finishing tool that helps reduce frizz and leave hair silky and smooth. Plugs into AC with 9’ cord. 9” L x 4” W x 4” D. (1 lb.) http://www.hammacher.com/Product/Default. aspx?sku=84061&promo=Personal-Care-Womens-

ACCESSIBLE TRANSPORT SEAT FOR AIRPLANES W it h Pa ra ly mpic at h letes competing in London in 2012, the designers at Priestmangoode took the opportunity to rethink air travel for passengers with reduced mobi l it y. T he A i r Access concept contains two elements: a wheelchair that can transport passengers onto and off the plane, and a fixed-frame aisle seat on the aircraft which can be mated to the wheelchair to create a regular airline seat. For more information, go to www.core77.com/blog/transportation/air_access_ priestmangoode_concept_for_accessible_air_travel_23262.asp.

THE AUTOMATIC WINE OPENER The Oster Cordless Corkscrew (with chiller) will allow you to uncork your wine with the touch of a button. Cordless and rechargeable.

To purchase, go to www.kitchenplus.com.

ADAPTED CLOTHING FOR PEOPLE WITH DISABILITIES IZ Adaptive is a fashionable clothing line created by Canadian fashion designer Izzy Camilleri, designed for men and women in wheelchairs or with dexterity issues.

The collection is adapted to follow the seated body line eliminating excess fabric resulting in a look that is fashionable and seamless. For more information contact: Ly nda Jag ros May, Vice President Sales, IZ Adaptive, via telephone at 416 860-0783 or 1-866-831-0451, or via email at lynda@izadaptive.com.

Their website is www.izadaptive.com.

K no w of a ne w or i n nov at ive pr o duc t t h at y ou t h i n k ot her Spi n a l C olu m ns reader s wou ld l i ke to hea r about? Send us a description a nd compa ny cont a c t i n for m at ion t o publ ic at ions@c pa-a b.org and we may publish a profile in an upcoming issue.

33

regional

what’s NEW in

ALBERTA

TRAVEL BUGS

Thanks to CPA (Alberta)’s partnership with Westjet and the Foothills Hospital, this event was held at the Calgary International Airport where participants learned about travelling with a disability, including everything from booking a flight, to checking in, to boarding the plane and even trying out different lift systems. For more on this event, check out our YouTube video called “Peer Event: Travelling by Air with a Physical Disability”.

PROVINCIAL INTERNATIONAL DAY OF PERSONS WITH DISABILITIES (IDPD)

Congratulations to the many volunteers, sponsors and participants who helped to make the 2013 International Day of Persons with Disabilities such a success throughout Alberta!

CPA (Alberta) was pleased to collaborate once again with numerous other disability organizations and helped to organize events in Edmonton, Calgary, Medicine Hat, Grande Prairie and St. Paul. Stay tuned for updates regarding the 2014 schedule of events available soon.

Other events in 2013 included a summer BBQ sponsored by Canwest Elevator & Lifts and Motion Specialties; the annual Peer Christmas Party sponsored by Shoppers HomeHealthCare; as well as many opportunities to visit Unit 58 (spinal cord injury unit) at the Foothills Hospital with sponsorship and support provided by CanWest Elevator & Lifts and Motion Specialties.

To keep up to date on events happening in 2014, go to www.cpaab.org/news_events/calgary.

SCOTIABANK MARATHON

St. Paul IDPD Sledge Hockey Event: L to R – Team Canada members, Dustan Hamar, Keiren Block and Steve Arsenault.

NEW PUBLIC SERVICE ANNOUNCEMENT (PSA)

Thanks to the support of James H. Brown and Associates, CPA (Alberta) now has a new 30 second PSA produced in cooperation with Shaw Communications and was aired 457 times this past winter and spring. The PSA featured CPA (Alberta) member Josh Taylor. Check it out on our YouTube channel at www.youtube.com/cpaalberta.

CPA (Alberta) was the recipient of approximately $37,000 raised at the Scotiabank Marathon held on June 1st in Calgary.

Thank you to all of our supporters who helped make this event such a success. Special thanks to Shamel Elsayed, long time member and supporter of CPA (Alberta), who raised pledges and participated in the event even when recovering from recent health issues. Thank you as well to CPA (Alberta) staff members, Russ Bray and Marilyn Erho who also participated in the event.

CALGARY PEER PROGRAM CPA (Alberta)’s peer programs continue to provide social connections, educational opportunities and unique life experiences. By connecting people who have “been there and done that”, friendship, support and information can be shared.

CPA (Alberta) in Calgary continues to hold numerous fun and informative events that bring out members and staff. Some of our 2013 events included: Monthly Restaurant Reviews, where groups get together to socialize and enjoy a meal as well as critique the food, location and accessibility. Thank you to Pipella Law for their sponsorship.

34

L – R: Russ Bray, Shamel Elsayed and friends

FAMILY FUN DAY

In collaboration with Calgary Rotary Challenger Park and Challenger Little League Baseball, CPA (Alberta) kicked off summer with approximately 1200 other folks at Rotary Challenger Park in Calgary with various fun activities for all ages and abilities. Thank you to everyone who came out. Special thanks to Calgary Rotary Challenger Park, Rotary Club

regional of Calgary East and Grover & Company as well as our many supporters and sponsors who helped to make the day such a huge success!

on behalf of the 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 Robert Benjamin of Leduc, Erica Pretty of Fort McMurray, Corrie Funk of Grande Prairie, Becky Litke of Fort Saskatchewan and Perry Kootenhayoo of Edmonton.

Robert Benjamin

L – R: Cal Schuler, his mother and a local police officer at Family Fun Day.

EDMONTON PEER PROGRAM CPA (Alberta) in Edmonton was also very active with a variety of events in 2013, including ongoing events at the Glenrose Rehabilitation Hospital, events involving research, sexual health, home modifications, travel, career planning, etc. as well as an annual summer BBQ and Peer Christmas Party Thank you to Coloplast for their sponsorship of the Edmonton Peer Program. To keep up to date on events happening in 2014, go to www.cpa-ab.org/news_events/edmonton.

ADAPTED ADVENTURES

Adapted Adventures is a CPA (Alberta) active living program that also hosted numerous events in 2013, including: outdoor para cycling and clinics, paddling, sailing, fishing, scuba, integrated spin, cross country skiing, wilderness adventures, outdoor weekends, etc. Many of these programs are possible because of partnerships with other groups.

Margaret Conquest and Carissa Irwin high five.

RECOGNITION AWARDS

In addition to awards presented at the annual Red Carpet Affair, CPA (Alberta) was also honoured to recognize volunteers and supporters at a recognition luncheon held on June 14, 2014 in Calgary.

Regional Volunteer Recognition Awards are presented in recognition of individuals who, through their volunteer efforts

Well known for his gentle demeanor and smile, Robert volunteers at a variety of events, including anything from Red Carpet Affairs to information fairs throughout the province to selling raffle tickets. Robert often takes time off from his regular day job to attend these events using his personal vehicle to transport items, help other volunteers and staff and generally does whatever it takes to ensure success.

Erica Pretty A new member of CPA (Alberta) living in Fort McMurray, Erica has become a strong voice for people with mobility issues in her community. As the mother of a three year old daughter, one of Erica’s new goals is to ensure that playgrounds are not only fun but accessible so that she and her daughter don’t miss out on those special moments.

With this newfound passion, Erica has no problem educating through the media which, in turn, has helped CPA (Alberta) in our community development initiatives.

Corrie Funk With a simple wish to raise awareness and make the world more accessible for her daughter who has cerebral palsy and others who have physical disabilities, Corrie has worked diligently to promote and recruit participants for the local Chair-Leaders event in Grande Prairie. In addition, Corrie coordinated donations which included a fully sponsored appreciation dinner which added a little extra sparkle to the day. It is clear that Corrie continues to take her role of networking and advocacy seriously.

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regional Becky Litke

Heavily involved with CPA (A lber t a) t h rough t he Adapted Adventures program for t he past fou r yea rs, Becky knows the disability world firsthand from being a careg iver and friend to one of the participants. Also dedicating her time to weekly evenings with our summer cycling program, Becky is always willing to lend a hand if needed with other programs. Her commitment and dedication is unwavering.

Perry Kootenhayoo W i t h h i s l a id b a c k a ppr o a c h a nd c he er f u l demea nor, Per r y has a n uncanny ability to remind those around him to take each moment as it happens.

Perry helps with numerous act iv it ies, includ ing contacting donors, booking venues and speakers, as well as speaking and facilitating at information sessions. Perry’s reflective approach enables him to continually offer suggestions to ensure participants get the best experience from each event. In his capacity as peer mentor or representing CPA (Alberta) at an event, Perry’s contribution to the organization has been outstanding.

a regular advertiser in Spinal Columns. Not only do they provide financial support, they are also active volunteers at various events throughout the year. The award was accepted by Tara Pipella on behalf of Pipella Law. AMBASSADOR AWARD This is a provincial award presented to an individual in recognition of his or her long-time support of CPA (Alberta) in the area of fund development. This person has contributed to the financial wellbeing of the organization and has contributed much to his or her own legacy.

Blaine F. Holitskie Over the last 5 years, since 2009, Blaine Holitskie has donated $1000 per year directly to CPA (Alberta). Prior to that time, he donated to CPA (Alberta) through the United Way Designated Giving Program. His generosity and continued support is greatly appreciated.

EXTREME MAKEOVER With the leadership of board member, Paul Nemetchek and staff member, Angie Barron, volunteers and staff were busy this winter moving furniture, revamping storage areas and getting rid of items no longer needed. Thanks to supporters like James H. Brown and Associates who generously paid for all of the flooring replacement costs, the many companies who donated paint, and numerous volunteers, the Edmonton office of CPA (Alberta) has a new sparkle.

CORPORATE RECOGNITION AWARD This is a provincial award presented to an outstanding corporate supporter of the CPA (Alberta) through ongoing and long-term financial support and contributions of personnel, expertise, ideas and enthusiasm.

Pipella Law Personal Injury Lawyers For over ten years, Pipella Law has been a supporter of CPA (Alberta) either through direct financial support of our ma ny prog ra ms a nd services or through event sponsorship, such as the Calgary Peer Program, the Transition Pack Program which prov ides items of assistance to clients before they are discharged from hospit a l, a nd t he Peer Outings Program. They were also a long time sponsor of the Calgary Golf Tournament until its discontinuation and they are

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Paul Nemetchek in the middle surrounded by his team of volunteers

RED DEER FES BIKE IN RED DEER Thanks to the efforts of the Spinal Cord Injury Treatment Centre Society, the Red Deer General Hospital is now the recipient of an RT300 FES Bike. Installation and training will be provided by Su Ling Chong who has completed all of the required courses.

regional

Functional Electrical Stimulation Cycling Program

Launched in Calgary

T

he Ca nad ia n Paraplegic Association (A lber ta) is no w of fe r i ng the Functional Electrical Stimulation (FES)Cycling Program to empower people w it h spi na l cord i nju r y (SCI) and other physical disabilities to lead healthy, fulfilling lives. Partnership with the Amanda Project, Calgary Health Trust, Division of Physical Medicine & Rehabilitation at the University of Calgary, Foothills Hospital Department of Allied Health, Mount Royal University, the Neuro-Rehabilitation Unit (Unit 58) at the Foothills Hospital, University of Calgary Rehabilitation and Fitness Program for Persons with Disabilities, and the Steadward Centre, has transformed this program from a vision to reality.

The Benefits Come to Light •Muscular contractions may be evoked by electrical stimulation to enable upper or lower limb cycling •Improved circulation1 and cardiovascular fitness2, increased muscle mass 3, maintenance or improvement of bone density4, fewer pressure sores and less pain 5 are potential benefits •The FES Program is based on the provincially-recognized model developed by the Steadward Centre at the University of Alberta, allowing for standardized service design and delivery across the province including: Evaluation Process: Inpatients on Unit 58 will receive medical clearance and assessment. Eligible participants will begin training for

transition to a Community Program. Assessments and training will also be provided for outpatients at the SCI Fitness and Wellness Centre.

Community Program: Follow ing medical clearance and FES assessment, persons with SCI and other neurological conditions in the community may incorporate FES training into their overall fitness program at the SCI Fitness and Wellness Centre.

With the support of community partners including, Ca nwest Elevator & Li f ts, Cenov us Energ y, Mot ion Specialties, Pipella Law, and the Rick Hansen Foundation, Certified Exercise Physiologists at the SCI Fitness and Wellness Centre provide individualized exercise programming in a barrier-free facility. Standing frame elliptical trainers, a recumbent stepper, ra ised mats, resistance tra ining equipment, ceiling lifts and FES bike optimize the benefits of physical activity. The opportunity to exercise independently or with the assistance of a family member or caregiver is available in the drop-in exercise program. For more information call (403) 228-7433 or visit www.cpa-ab.org.

Jacobs and Nash. 2001. Modes, benefits, and risks of voluntary and electrically induced exercise in persons with spinal cord injury. J Spinal Cord Med. 24: 10-8. 2Hooker et al. 1992. Physiologic effects of electrical stimulation leg cycle exercise training in spinal cord injured persons.

Arch Phys Med Rehabil.73: 470-476. 3Mohr et al. 1997.

Long-term adaptation to electrically induced cycle training in severe spinal cord injured individuals. Spinal Cord. 35: 1-16. 4Frotzler et al. 2008. Highvolume FES-cycling partially reverses bone loss in people with chronic spinal cord injury.

Bone. 43: 169-176. 5Wilder et al. 2002. Functional electrical stimulation cycle ergometer exercise for spinal cord injured patients. J Long Term Eff Med Implants. 12:161-174.

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