Outspoken! Magazine - Spring 2014

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:05 AM Page 1

Outspoken!

Spring 2014

R.A.R.E Theatre Company

BORNE Presented by Spinal Cord Injury Ontario

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Equity for All Wins at City Hall – Toronto Taxi Reform

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Get Into High Gear For Summer

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Nutrition for Neuropathic Pain

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Successful Ski & Snowboard Day 2014

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You Talk. We Listen!

Outspoken! Survey

SCI ONTARIO CHAMPIONS EXCELLENCE IN SERVICE, ADVOCACY AND QUALITY OF LIFE FOR PEOPLE WITH SPINAL CORD INJURIES.

sciontario.org

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advocacy that makes a difference

For our clients and their loved ones facing serious personal injury, we are committed to providing the highest level of support with dignity, respect and trusted expertise.

GLUCKSTEIN GLUCKSTEIN l PERSONAL INJURY LAWYERS l l PERSONAL INJURY LAWYERS l

OFFICES l TORONTO 416.408.4252 NIAGARA AREA 905.228.6169 TOLLFREE 1.866.308.7722 l www.gluckstein.com OFFICES l TORONTO 416.408.4252 NIAGARA AREA 905.228.6169 TOLLFREE 1.866.308.7722 l www.gluckstein.com

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20 Our Vision: SCI Ontario champions excellence in service, advocacy and quality of life for people with spinal cord injuries.

EDITOR, ADVERTISING, SALES Bev Jenkins bev.jenkins@sciontario.org CREATIVE DIRECTION/DESIGN gbc-design.com gbc@gbc-design.com CONTRIBUTIONS Bill Adair, Peter Athanasopoulos, Sheila Daniel, Mary Dufton, Dan Harvey, Dustin Kahn, Jeffrey Kerr, Nancy Lawson, Darren Lillington, Sarah McKinnon, Lynn Miñeque, John Pereira, Anthony Salvatore, Joanne Smith, Marilyn Stafford, Yves Thauvette, Michael Woolsey, Yuki Wu, Nancy Xia

Subscription to Outspoken! is a benefit of SCI Ontario membership. To join, please call Membership Services at 1-877-422-1112 x272 or visit membershipservices@SCIOntario.org.

For editorial enquiries, to submit a story, or for information about advertising in Outspoken!, email Bev Jenkins at bev.jenkins@sciontario.org Outspoken! is produced through the generation of advertising revenue.

The opinions expressed in Outspoken! are those of their authors and do not necessarily represent the views of SCI Ontario.

Products and services advertised or described in Outspoken! are not tested or endorsed by SCI Ontario.

For more information, visit us online:

sciontario.org

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14 cover story Cast member Russell Winklaar, is one of nine people with disabilities (the others at far right) who come together in a breakthrough play, to share their stories about their lives, and shine a new light on people with disabilities.

FEATURES Conversation with 8 InAdam Little Ontario Annual 9 SCI General Meeting Theatre Company, 14 R.A.R.E BORNE, Presented by Spinal Cord Injury Ontario for All Wins at City 16 Equity Hall – Toronto Taxi Reform Service Available 18 New through Kingston General Hospital Talk. We Listen!

19 You Outspoken! Survey Into High Gear for 20 Get Summer with Disabilities Share their Stories of their 22 Women Path to Physical and

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Emotional Wellness Words that Hurt

Inclusion: 28 Enhancing Attendant Services in Ontario – Public Policy

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Summit and Webinar Tips for Finding the Perfect Wheelchair Accessible House or Condo to Renovate SCI Ontario Board member, Bernard Gluckstein Receives King Clancy Award The Last Dance Is Mine

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32 34 Access TO 34 Accessible Wasaga Beach the 36 Demystifying Registered Disability Savings Plan (RDSP) Ontario Renews Support 36 forFoundation Rick Hansen and ONF

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DEPARTMENTS viewpoint

client services

giving

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• 12 Computer Class at SCC Resource Centre

• 38 Community Events in Support of SCI Ontario

Message from Bill Adair: SCI Ontario: Making Strides in Advocacy

your health •6

Nutrition for Neuropathic Pain

peer support • 10 Max Meijer – Positivity, Volunteering and Keeping Active

what’s on!

• 26 Calendar of Events • 26 24th Annual Barbara Turnbull Open Golf Tournament • 26 Community Event in Coldwater, Ontario • 27 Ski & Snowboard Day 2014 • 27 Ottawa Champagne Auction and Dinner

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Classifieds

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Advertiser Index

SCI Ontario

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viewpoint

By William Adair Chief Executive Officer, SCI Ontario

SCI Ontario: Making Strides in Advocacy Sometimes when I am out in the community people ask me, “Bill, what is SCI Ontario doing in the area of advocacy?�

Well, in fact, quite a bit! I’d like to tell you what we’ve been up to lately.

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ur Public Policy and Government Relations team members are kind of like backroom superheroes. They knock down barriers and fight for systemic change! They have gained some hard-earned successes this past year. Many of you have helped by participating in our campaigns on our website (www.sciontario.org/publicpolicy).

Here are recent accomplishments: • We lobbied the municipalities to continue providing home modification funding. As a result, Ottawa and Hamilton regions still maintain the program. • We lobbied the provincial government for more money directed to home care and that include people of all ages, not just seniors. As a result, $180 million in new funding is now available to all Ontarians. • We lobbied Family Health Teams to increase their accessibility. The result was 53 accessible examining tables and 10 ceiling lifts now in doctors’ offices across the province. • With the AODA Alliance, we asked the provincial government to conduct

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Please see my article in this edition of Outspoken!

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• Outspoken! • Spring 2014

a formal review of the Accessibility for Ontarians with Disabilities Act. They agreed and the review is underway. (www.aodareview.utoronto.ca) • We lobbied the provincial government to increase funding for community-based attendant services. Close to a $7 million investment in service expansion has significantly increased the number of Ontarians receiving attendant services. • We lobbied the City of Toronto to increase the number of accessible taxis in the city. The results were excellent but I’m going to let Nancy Lawson tell you about it on page 16.

We continue to work on two major priorities – expanding attendant services and improving the Assistive Devices Program (ADP).

Back in January, SCI Ontario and our Public Policy partner, the Personal Injury Alliance (PIA), held a summit to talk about attendant services in Ontario. During the summit The Honorable Deb Matthews, Minister of Health and Long-Term Care, announced a $5 million increase in funding for attendant services. She also promised to invest even more money in the future. I was thrilled to have validation that our work with the government is effective. The Minister and her senior policy staff have been actively listening to our concerns and implementing positive change. There is still work to do to ensure that all those who need appropriate attendant services get them. It is good to know that we are working with a government that understands the issue and is willing to make changes for the better.

Recently, I was reviewing research from Lyndhurst Centre and noted that a major cause of delay in discharge from rehabilitation in 2012 was the lack of equipment availability. Out of 270 patients who faced a discharge barrier, 57 were caused by a lack of available equipment, largely through Ontario Assistive Devices Program. They could have gone home or to an alternate living situation if equipment was available. These delays are not acceptable. We are currently building a plan and welcome your suggestions for solutions. Again, look to the Public Policy section of our website for updates and campaigns.

All this work would not be possible without the support of our Public Policy partner, the Personal Injury Alliance. With PIA’s generous financial support, we have been able to achieve meaningful change that improves the quality of life for Ontarians living with SCI. Thank you PIA! Congratulations to the Public Policy and Government Relations team for a successful year and a hearty thank you to those of you who joined our efforts. We look forward to what the next year brings!

Sincerely,

William Adair Chief Executive Officer Spinal Cord Injury Ontario

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Proud Partner of Spinal Cord Injury Ontario

Fact #7

The Personal Injury Alliance has

devoted solely to personal injury law.

If you’ve suffered a catastrophic injury CALL FOR A FREE CONSULTATION 1-855-4-PIA-LAW

pialaw.ca/getthefacts

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your health

By Joanne Smith

Nutrition for Neuropathic Pain Neuropathic pain is unimaginable. It affects 29-79% of people with SCI and compares with no other pain. I learned this after a car accident 25 years ago.

T

he collective pain of breaking my back, shattering my wrists, smashing my skull, puncturing my lungs and lacerating my internal organs didn’t rival the agony of the neuropathic pain I experienced from damaging the nerves in my spinal cord. My neuropathic pain is best described as an ice pick being stabbed into my bones every 30 to 60 seconds.

In the months following my accident, as my orthopedic and visceral injuries healed, the daily wrath of excruciating neuropathic pain emotionally, mentally and physi-

cally consumed, exhausted and debilitated me. Making matters worse, there wasn’t as much knowledge about neuropathic pain then as there is today. So during my four months in an acute care hospital I was told that due to my paralysis it was impossible for me to feel anything below my level of spinal cord injury and was refused any kind of pain medication.

When I was transferred to a rehabilitation hospital my pain was finally addressed with medication.

While these meds certainly didn’t eliminate my pain, it controlled it,

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• Outspoken! • Spring 2014

allowing me to start participating in my rehabilitation program and rebuilding my life. However I worried about the long-term effects of taking daily pain killers on my stomach lining, liver and overall health. I knew there had to be a healthier way to address my pain and after ten years of suffering I found it. I changed my diet.

Good nutrition can help reduce pain impulses within the nerves, limit the brain’s perception of pain, and decrease tissue inflammation and damage without the negative side effects associated with pain medications. Here’s some nutritional recommendations to help you address your neuropathic pain.

1. Reduce Inflammation Inflammation of tissues can contribute to the onset and intensity of pain. A diet high in processed foods, such as refined sugar (pop, candy, pastries, cakes, cookies, etc.), white breads/pasta/rice and dairy will over time lead to chronic inflammation in the body.

Eliminating these kinds of food from your diet will help decrease inflammation.

Additionally, there are certain foods that actively help reduce inflammation such as turmeric (contains a compound called curcumin, which reduces inflammation) and essential fatty acids (natural oils from plants and fish), so start introducing and/or increasing

these in your daily diet. If you don’t like fish or don’t eat it 3-4 times a week, consider taking a daily fish oil supplement. See below for other anti-inflammatory foods.

Anti-inflammatory Foods • Turmeric • Omega-3 essential fatty acids – salmon, sardines, mackerel • Olive oil • Green leafy vegetables • Berries • Beets • Almonds/walnuts • Ginger • Garlic *If you are on blood thinning medications – talk to your physician first before taking Omega-3 supplements

2. Avoid Food Allergens & Food Additives It is important to identify and eliminate any food allergies and/or food intolerances from your diet because they can cause inflammation and contribute to pain. Some of the most common food allergens/intolerances are milk, dairy, wheat, gluten, citrus, corn, eggs, sugar, soy, peanuts, pork and yeast.

Food additives such as MSG, artificial sweeteners, colours and flavours can also be toxic to your nerve cells and increase sensitivity to pain. Read food labels carefully and avoid these as much as possible.

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Electric Leg Bag Emptier

3. Six to Eight Cups of Fluid a Day When the body has a build-up of toxins it can irritate the nerves leading to pain. Drinking 6-8 cups of water, diluted juice and/or herbal tea can help flush out excess toxins from your body.

4. Increase B-vitamins There are eight B-vitamins and many promote healthy nerves and can provide nerve pain relief. For example, biotin can help in the prevention and management of neuropathy and vitamin B6 plays a critical role in pain management by making pain-inhibiting neurotransmitters.

Many people are deficient in B-vitamins, so include plenty of vitamin Brich foods in your diet such as avocados, legumes, lentils, quinoa and whole grains. These foods are also high in fibre so they will assist in removing toxins from your body. If you don’t eat these foods on a regular basis consider taking a B-complex supplement.

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5. Boost Your Immune System Maintaining a strong immune system is important because bacterial, yeast and viral infections can cause pain and inflammation. For example, fungal and bacterial infections can produce myotoxins that can cause inflammation and irritate the nerves resulting in pain.

Consume a diet high in fruits/vegetables and nuts/seeds, which are high in immune boosting nutrients. Daily probiotic supplements (minimum 8 billion micro-organisms) also helps support the immune system.

By following all of the recommendations I’ve made here, I was able to reduce my daily debilitating bouts of neuropathic pain to just one or two short episodes a month. I also experienced many other benefits such as weight loss, increased energy and reduced headaches. Try this delicious recipe that combines many pain-relieving ingredients! ●

For More Information Contact: Dr. W. Charlton

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Tel (705) 644-1200 fax (705) 646-8845 emptiers@assistivedesigns.com www.assistivedesigns.com

Pain Free Quinoa

• 2 tbsp olive oil • 1 stalk celery, chopped • 2 carrots, sliced • 1 small onion, minced • 1 clove garlic, minced

Québec vacations for people with disabilities

• 1 cup vegetable stock • ½ cup uncooked quinoa • 1 tsp turmeric • ¼ cup fresh parsley • Sea salt & pepper to taste

Instructions 1. Heat the olive oil in a saucepan over medium heat. Stir in the celery, carrots, onion, and garlic. Cook and stir until the onion has softened and turned translucent, about 5 minutes.

2. Stir in the vegetable stock, quinoa and turmeric. Bring to a simmer, then reduce heat to low, cover, and simmer 25 to 30 minutes until the quinoa is tender and has absorbed the liquid.

3. Once done, fold in parsley and season to taste with salt to serve.

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SCI Ontario

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feature

IN CONVERSATION with Adam Little on selfadvocacy and its role in public policy

By Peter Athanasopoulos

Advocacy is an important life skill for all of us.

From the first day in kindergarten when Johnny kicked you out of the sandbox, to breaking up with your first love, to negotiating for a raise at work… all of these situations demand for us to stand up for ourselves. They are life lessons and we grow from each failure and each success.

A

nd after a spinal cord injury, the ability to advocate becomes a necessity.

In this article, Peter Athanasopoulos interviews Adam Little of Oatley Vigmond LLP to get his take on self-advocacy and its role in public policy.

Advocacy is a key component of SCI Ontario's Public Policy program, which is generously supported by the Personal Injury Alliance (PIA) which consists of the three law firms, Thomson Rogers, McLeish Orlando and Oatley Vigmond.

PA

There is no doubt in my mind that people with spinal cord injuries need to advocate for themselves. It takes skill and talent to argue in favour of something in a way where others listen and make the desired change. In your work with clients who have an SCI, how do you help them develop the skills and abilities to advocate on their own behalf?

Advocating for oneself can seem like a daunting task. As a personal injury lawyer, being a robust advocate for my clients is the most important part of my job. In embracing that advocacy role, one of the goals I try to achieve is to assemble a strong support system including a team of rehabilitation professionals for our clients with SCI. Over time, we find that clients achieve a level of confidence from their support system that allows them to personally take charge of many day-to-day situations, and ensure their needs and rights are being respected. Self-advocacy is about being actively involved in achieving what you want, and confidence is the baseline skill for just about all forms of advocacy.

So, what I hear you saying is that people need to surround themselves with people who care. These people can be healthcare professionals but also friends and family. I really agree with you about the importance of being connected to others to help build confidence.

Now if you were to provide three key tips to help individuals advocate on their own behalf, what would they be?

First and foremost, accept the challenge of self-advocacy and do not simply assume that the status quo is the only solution. Once you have taken that first step of accepting the challenge of self-advocacy, the rest is easy!

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• Outspoken! • Spring 2014

Second, rather than just being critical of the problem or barrier you are facing, propose alternatives that are acceptable to you. It is much easier for a decision maker to agree to removal of a barrier if reasonable and equitable alternatives are presented from the outset.

Third, start at the top. Obtain the name and contact information of the person in charge. This will save you a substantial amount of wasted time in explaining the problem to someone who is in no position to help.

Those are great points! I’d also like to mention about our Public Policy Program on our website (www.sciontario.org/publicpolicy). In partnership with the Personal Injury Alliance (PIA), we are soon to offer training for people who want to start advocating around issues of concern. We are presently developing video training modules that individuals can use to train themselves. Our readers can look to our website for further updates in the near future.

That sounds like a useful resource and I’m glad the PIA is involved in this partnership.

Me, too! In regards to the advocacy training program, what skill development do you think will be helpful for us to focus on?

An effective advocate is confident and well-prepared. Programs that assist in teaching self-confidence and preparation should be areas of focus, from my perspective.

Thanks! We will keep that advice in mind. I’m wondering… in working with many clients over the years, have you found there to be repetitive barriers commonly faced by individuals and if so, can you describe one?

Physical accessibility is, unfortunately, still the most common barrier faced by individuals with SCI. Even where an accessibility option appears to have been considered by an architect or designer, sometimes the option remains unusable due to a simple lack of understanding of the challenges faced by someone who, for example, uses a wheelchair.

You know, this is why I love my job! Everything we do in the Public Policy Program, in the end, makes the world that much more accessible! When it comes down to it, all the issues and barriers we address impact people’s access to their community. We know that when Ontarians with SCI speak collectively on an issue, we are more likely to achieve desired changes.

What suggestions do you have for Ontarians with SCI who want to work together to address issues of common concern?

It is often said that “the pen is mightier than the sword,” and I could not agree more with this sentiment. I suggest that SCI Ontario’s Public Policy Program continue its work with written submissions on key issues of importance, such as taxicab accessibility, issues around assistive devices and attendant services – in an effort to bring about changes in our society. That said, sometimes change can be brought about more quickly when the public is able to associate a name or face with a particular problem. As such, I would also suggest that SCI Ontario appoint a spokesperson to become the “face” of the challenges of accessibility and equality in Ontario. The spokesperson could address the media, government, private business, and educational organizations, to tackle the issues facing persons with SCI in a more personal way.

Adam, you’ve provided a lot of great advice! Thanks for taking the time to chat about advocacy.

Thanks, Pete, for giving me the opportunity. ●

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SCI Ontario Annual General Meeting SAVE THE DATE! Spinal Cord Injury Ontario’s Annual General Meeting Wednesday, June 18, 2014, 2:00 p.m.

Leaside Memorial Gardens – The William Lea Room 1073 Millwood Road, Toronto, ON M4G 1X6 Join us for a recap of the year’s highlights, a sneak preview of Borne, a play about people with spinal cord injuries, and light refreshments.

Members please RSVP by calling 416-422-5644 ext. 211

ASK A LAWYER Do you have a legal question?

Try the free Ask a Lawyer service on the SCI Ontario website.

If you or someone you know has experienced a catastrophic injury, Ask A Lawyer from the Personal Injury Alliance any legal questions you may have.

This confidential and no-obligation service puts you in direct contact with lawyers from three of Canada’s top Personal Injury law firms, McLeish Orlando; Oatley Vigmond; and Thomson, Rogers.

Submit your question at www.sciontario.org/sciontario/pia

SCI Ontario

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peer support

Max Meijer

POSITIVITY, VOLUNTEERING AND KEEPING ACTIVE

By Yuki Wu, Regional Client Services Assistant

I

met Max Meijer for the first time at one of our monthly Peer Support coffee drop-ins. His positive and calm responses to questions bring insight and optimism to patients in the Hamilton Rehabilitation Centre. Max frequently drops by the SCI Ontario Hamilton regional office. His active lifestyle and multitude of interests makes him one of our appreciated Peer Support volunteers. He is often matched with people who want to expand their interests and improve their lifestyles. His positive attitude also makes him an excellent match for anyone who may be facing difficulties in their lives.

In 1979, Max was the owner of a small poultry farm in Grimsby, living with his two sons and his wife, who was carrying their third child, a daughter. Besides working his farm, Max had a full time job as a heavy duty machine operator. His work was physically demanding. He and his family were looking forward to the day when they could own a larger farm and work it full time.

In late 1979, Max was diagnosed with a benign tumor on his spine. It had an extremely fast onset. Max was lifting something when suddenly he PROUD TO SUPPORT THE PEER SUPPORT PROGRAM, HAMILTON REGION

PROUD TO SUPPORT THE PEER SUPPORT PROGRAM, OTTAWA REGION

PROUD TO SUPPORT THE PEER SUPPORT PROGRAM, CENTRAL ONTARIO REGION

PROUD TO SUPPORT THE PEER SUPPORT PROGRAM, KINGSTON REGION

PROUD TO SUPPORT THE PEER SUPPORT PROGRAM, LONDON REGION

started to experience significant back pain. Initially he thought the pain would simply diminish over time, but it got progressively worse. The tumor was found via a myelogram, as they didn’t have MRIs and CTs in those days. The whole series of events devastated him; it seemed to be the end of everything. The drastic change in his health made him think, “Maybe it was the best if I wasn’t around.” He had several surgeries that year, before eventually being admitted to Holbrook Rehabilitation Center – now the Hamilton Regional Rehabilitation Centre. Max spent a total of three months in rehab.

It was because he knew his family was always behind him and supporting him, along with the expertise of all the healthcare professionals, that he was motivated to get the most out of rehab. Max said that while he is truly appreciative of his family, friends, and professional help, he credits his faith and the prayer support of many people, for the strength that helped him during this journey.

While some may stay pessimistic and unmotivated, Max spent approximately one year getting better physically, then immediately landed a full time position as a sales representative in the food industry. Over the next decade and more, Max worked in a number of companies in the food and agriculture industry. Max and his wife also welcomed their fourth child, another daughter.

Twelve years is the number of years in a lunar cycle but for Max, 12 years now almost signifies the time for another surgery. The first one was in 1979, then in 1992 and again 2004. Max had two different revisions on his spinal cord surgery. The scar tissue, a byproduct of his first surgery, was pressing and constricting his spinal cord. But Max was not one to give up.

He went through the rehab program again after each of his later surgeries.

Through his hard work, Max currently is able to walk with the assistance of canes, but still keeps his wheelchair handy, just in case.

Not only was Max not defeated by his recurring surgeries, he also realized that he is able to help those who endured a similar journey. In 2005, Max officially joined SCI Ontario as a peer support volunteer. Max has been involved with many referrals after his peer volunteer training and has provided many people with SCI with the opportunity to personally discuss the challenges they face on a daily basis. The average meeting with a client can take anywhere up to, but not limited to one hour, and in most cases they will meet several times to deal with the client’s issues. His listening abilities and positive attitude allow others to speak with him comfortably, and his woodworking and gardening interests encourage an active lifestyle.

He has been a valuable member of the SCI Ontario team and constantly encourages other people with SCI to lead an independent lifestyle.

Continued on page 18

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• Outspoken! • Spring 2014

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49bespoke.com

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client services

Computer Class at SCC Resource Centre

By Nancy Xia, SCI Information Assistant

T

he Spinal Cord Connections Resource Centre has been offering free computer lessons to our clients for more than two years. This program was started by a Toronto Rehab volunteer named Sam Khechen who has a rich background in computer engineering and software programming.

As someone with a disability himself, Sam recognized the need of have a free computer training program in our community, as many of our members had very limited knowledge of how to use a computer. Some of the students started off the lesson by learning how to turn it on and off. Since Sam moved on from this volunteer position, we have had six volunteers contributing their time in this program. Our current teachers includes two dedicated and talented individuals, Ravinder Malhi and Geoff Fridd.

Ravinder Malhi is now enrolled in the Canadian Institute of Management Technology (CIMT) College. As a person with limited vision, Ravinder can relate to the challenges of someone living with a physical disability. “I feel very relaxed during my lesson with them,” Ravinder commented. As a teacher, she is extremely compassionate and patient with her students.

She always reminds herself that sometimes people might take longer to learn a complicated program from scratch. In the process of helping others, she feels satisfied knowing that her efforts are appreciated. Ravinder lives in Brampton.

Every Wednesday, she travels two hours just to get to Lyndhurst. But her passion and dedication for this program and her students, has conquered any challenges she may have in fulfilling her commitment.

Geoff Fridd, a Toronto Rehab volunteer, comes every Thursday afternoon to teach computer classes. Before his retirement in 2003, he had

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• Outspoken! • Spring 2014

been in the computer business for more than 38 years. His career included many roles, ending up as a founder and entrepreneur in a small company that marketed and consulted on mainframe software for IBM. Geoff began volunteering for a number of reasons. First, he wanted to stay active in life, “I don’t find it easy to relax,” and second, he considered himself blessed for having a good life and wanted to give back to society by donating his time and energy. Geoff has been perfectly consistent and punctual. We can count on him to show up for his shift during the rainiest and coldest weather. As to the reason for his unwavering devotion, he said he enjoys it, “especially seeing the excitement in those people who discovered for the very first time that they could gain access, at their fingertips, to a huge wealth of

Left: Geoff Fridd (right) is teaching Jack, one of his students.

Above: Ravinder Malhi

interesting, entertaining and useful information on the worldwide web.”

A number of the students have attended their session every week for more than a year. One student recalled, “other than the local libraries, I wasn’t able to find an accessible location where they offer free computer training.” Another student said, “The lessons are offered on a oneon-one basis. I get to learn exactly what I want in a faster and more efficient way.” Indeed, most students tell us they appreciate knowing how to surf the Internet, connect with friends over Facebook, and Skype with family members in other parts of the world.

To learn more about this program, or to sign up for a session, please call 416-422-5644, Ext. 213. ●

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Different Roles. One Goal.

Together we care for their future.

Through your skill and compassion, you help them to heal. Through our legal expertise, and relentless drive, we ensure clients receive the financial support they need now, and in the years to come.

If you or someone you know has suffered a critical injury, or would benefit from a legal second opinion, call McLeish Orlando today at 1-866-685-3311 or visit www.mcleishorlando.com

RR I E I HAMILTON H A M I LTO N I KITCHENER TORONTO TO R O N TO I BA BARRIE

1-866-685-3311 1- 8 66-685-3311 I ww www.mcleishorlando.com w. m c l e i s h o r l a n d o . c o m

CANA D I

AN

LAWYER M A

INE AZ G

™

A Noticeable Notice a ble Difference Differ ence

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cover feature

R.A.R.E Theatre Company

BORNE

Presented by Spinal Cord Injury Ontario

Borne is a play that is a bold mix of art and advocacy. Under the guidance and expertise of Real Artists Reaching Everyone (R.A.R.E.) Theatre Company’s Artistic Director, Judith Thomson, R.A.R.E’s mandate is to give a voice to certain groups of people who can be marginalized in our society.

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DAN RARILIO

DAVID SHANNON

HARLEY NOTT

JOSHUA DVORKIN

MAAYAN ZIV

NANCY XIA

NIKOLETTA ERDELYI

RUSSELL WINKELAAR

DAN HARVEY

• Outspoken! • Spring 2014

Photos: John Gundy

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:06 AM Page 15

B

orne enables people with spinal cord injuries and other spine-related disabilities to publically comment on issues that impact their lives. It is a chance to tell a general theatre audience what it is like to live with a disability. This is important for people to hear, as really, the only difference between the people on stage and those sitting in the audience is a moment in time… what happens in an instant lasts a lifetime.

Nine people came together to share their raw and bold stories in the play. Many topics were discussed including their accomplishments, key moments in life, love and sadness to mention just a few. Thank you to all participants. The following provides a brief description of each of the cast members experiences and involvement in the play, and what they hope will be the outcome for to audience viewers.

Dan Raralio In 2007, I was diagnosed as having a Degenerative Disc Disorder (DDD). I had an operation the following year on my lower back. This was the first of what was going to be a series of procedures for the next four years. The road to recovery has been a long and challenging journey. I had walked this road four times having to restart with each spinal operation. Throughout all this, I found renewed energy and focus through my lifelong passion as a piano player. Life throws us curveballs, but that didn’t stop me from doing the things I can. Last year, I was presented with an opportunity to join an SCI Ontario project that would cast people with spinal cord injuries in a play. After several workshops, Borne was born.

Borne is a very unique stage play. The cast become actors portraying their own personal stories.

Judith Thompson, director and playwright, has a style that inspires the individual players to be creative and show their artistic potential. From the very beginning as everyone’s story evolves, the play becomes more and more powerful. I’m so fortunate to be involved in this project, as Judith has also challenged my creativity to play and develop the piano music for the various scenes and transitions of the play.

Moreover, I am learning so many things about the disability experience. This is an education that is enriching my life and inspiring me to be a better human being. Borne is a play that will definitely leave a lasting impression on the audience about the disability community in many different ways.

Nancy Xia Coming to Canada at the age of 13, I had a lot of barriers and hurdles in my new life. In grade eight and nine, the class I dreaded the most was drama. Aside from my poor English, I was introverted and easily embarrassed. I always became a burden to the members of my assigned group and ended up with a role that had no true value. More than a decade later, I am about to perform on stage in an actual theatre production. At the time of this writing, the reality of all of this has not yet fully registered.

When the casting for the play was first announced, I did not think I had what it takes. But then, my friends and even my boss encouraged me to participate. "You are going to tell your own story. You don't have to act or pretend to be some one else." In recent years, I have always been very outspoken about my injury, why it happened and what could have been done to prevent it. I thought putting my story on a stage could probably reach more people, so I went for it.

After meeting the director and the rest of the cast, I immediately felt like this was a project worthy of my energy and potential panic meltdown. During the workshops in which we shared our stories and developed them into our script, I was inspired by my fellow cast members, realizing the challenges they have overcome and the triumphs they have achieved in spite of their physical disabilities. Our director is incredibly talented. She was able to unleash our inner drama queen by delivering our story in a theatrical style. Most of the team were born to be actors and actresses. As for me, I discovered a side of myself that I did not know before.

For fellow members of the disability community, this play will resonate with your own personal experiences. It will give you comfort and encouragement realizing that you are not alone on your life journey. It will also become a strong voice to the people who previously know very little about what it takes for a person with a disability to go through the day and do things that others take for granted.

Our hope is that we will help promote a more accessible and compassionate society. I cannot wait to witness the impact we will make on our audience.

Dan Harvey The last time I was acting in a play, and standing, was May 22, 2003. Less than 48 hours later, I fell off of a trampoline, and commenced my life as a person with a spinal cord injury. Eight months after that, I was back on stage and in a high school drama class; however, this time, I was sitting.

Unfortunately, in 2003, a play like Borne didn’t really exist (in fact, it is still an anomaly today). Of

BORNE July 1 – 19, 2014 Young Centre for the Performing Arts 50 Tank House Lane Distillery Historic District Toronto, ON Support Spinal Cord Injury Ontario July 7 / July 14 Gala Nights Tickets: 416-422-5644 ext. 218 or Tickets: 416-866-8666 or go to: www.youngcentre.ca course there were representations of people with disabilities on television and in film, but many of these roles were played by individuals without a disability, which certainly hindered my ability to fully accept or acknowledge that despite my new disability, I could still do pretty much anything I wanted to. This play is certainly something I could have devoured in 2003, perhaps on a day trip from the hospital, because the script debunks a long list of stereotypes, and highlights what life using a wheelchair actually looks like.

However, Borne has a distinct message for both people with and without disabilities.

Specifically, I hope the audience will see that people with disabilities are not restricted by their bodies; we are inhibited by the culture around us.

This will be highlighted through our real-life experiences, which are often poorly presented in newspapers and on television news networks. In 2012, I obtained a Master’s degree studying the stereotypical representations of disability in the media, and I know that the presence of a project like this can help shift the image of a demographic that is far too often misrepresented.

Russell Winkelaar The thought of getting in to the acting world has always been simmering on the back burner of my mind. In high school I was more interested in art and gym class. My twenties rolled by a little too fast, filled with much travel and socialising. So, as my thirties approached I gained a sort of “now or never” attitude towards acting. That attitude was now bolstered with a growing rage at how people with disabilities were, and still are, being portrayed in television and film. I started to actively look around for any representation of what it is really like being in a wheelchair. After a lot of looking I did find some good ones, but even then, none of the actors had disabilities.

Continued on page 32

SCI Ontario

• 15

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:06 AM Page 16

feature

Equity for All Wins at City Hall Toronto Taxi Reform

By Nancy Lawson, SCI Ontario Advocacy Committee Member

Starting July 1, 2014, Torontonians and visitors to the city will notice more wheelchair accessible cabs on the streets after a precedent setting decision

by City Council that will require all cabs in Toronto to be wheelchair accessible by June 30, 2024.

T

his decision is sure to be watched by cities around the world, and will serve as a model for the rest of Ontario where municipalities are required by the Accessibility for Ontarians with Disabilities Act (AODA) to consult on and provide “on-demand” accessible cab service.

SCI Ontario and its members were actively involved in the City’s exhaustive three-year review of the industry that examined a broad range of issues, including wheelchair access and a complex licensing structure.

Currently only 3.5% of Toronto’s nearly 5,000 licensed taxis are accessible, but most are contracted to Wheel-Trans and not allowed to serve the public. In addition to difficulties obtaining cabs – which typically have to be booked in advance – SCI Ontario members have reported continually being charged illegal inflated, flat rate fees, instead of the metered rate. This wide ranging practice is contrary to City licensing regulations, the Ontario Human Rights Code and the AODA, but continues despite an April 2013 agreement reached after a complaint to the Ontario Human Rights Tribunal.

During the consultation process, SCI Ontario advocated for service equivalency for people with disabilities, meaning, an accessible service would deliver the same quality and level of

16

• Outspoken! • Spring 2014

service as is available to the general public. SCI Ontario’s CEO Bill Adair explained, “We believe people with spinal cord injuries and other disabilities should be able to expect the same wait times, fares, hours of service, customer service, and ability to hail a cab as people who don’t require accessible cabs.”

On February 19, Toronto City Council set a goal of 290 accessible taxis (6% of the fleet) on the road by 2015. Their recent decision also directs that by January 1, 2019, taxi companies will provide accessible service in the same amount of time as service provided to those customers who do not require an accessible cab.

The most contentious issue in the review was changing the complex licensing structure, leaving the many industry participants fighting over a piece of the pie which is estimated at $1.62 million in daily fare revenue. Some of the “standard license” holders who disagreed with Council's vote are now considering fighting the decision in the courts.

While the City’s chosen model, “owner-operators” face additional costs associated with accessible vehicles, the costs pale in comparison to City issued standard taxi licenses that have sold on the open market for in excess of $300,000. Under the new system, fees for “middlemen” and others that some industry participants saw as offering no value to customers will eventually be eliminated. In addition, the old “ambassador license” holders will gain new benefits, offsetting costs of wheelchair access. Customers will not see any increases at the meter as the City decided to maintain the current fare rates.

While some industry players hired lobbyists and launched an aggressive public relations campaign against significant enhancements in access, Peter Athanasopoulos, SCI Ontario’s Manager of Public Policy and Government Relations noted, “Members and volunteers were essential in projecting a strong, effective voice for the need for better access. Hundreds of people used our automated email system at least once

to communicate their support to members of Council and City staff for on-demand service.”

People engaged their networks, encouraging others to support the cause by taking some action, even if small. Volunteers met with licensing staff, including attending a powerful SCI Ontario consumer consultation to give voice to those outside the taxi industry. A key meeting of the licensing committee was attended by several people with disabilities who made “deputations” from the floor of the council, alongside more than 500 industry players. They articulated the experiences and needs of people with disabilities, making a compelling case for strong action.

Volunteers contributed their stories, ideas and time to help assemble a written submission to the City, which was endorsed by numerous disability organizations. Others spoke to the media, blogged, posted comments on media sites, researched the issue, and attended City Hall on the day of the decision. SCI members outside of the city joined in to support the need for accessible cabs for tourists and those visiting Toronto for business or leisure.

Despite such efforts, Peter explained, “We were concerned that at subsequent stages of the process, we were seeing a weakening of access improvements and calls for further delay.”

However, in the end Council voted strongly for bold action.

In this precedent setting victory, Toronto will join London, England, which has had 100% access for years, and is often viewed as a model in the taxi industry. After a federal class action lawsuit, New York City recently endorsed a goal to achieve 50% accessible vehicles by 2020. ● When you call to book an accessible taxi from a Toronto brokerage if you are being asked to pay a flat rate, rather than a metered rate, please report this illegal activity to The City of Toronto Licensing Enforcement department at 416-392-3082 or you can call 311 and they will direct you to the right person. (Please note that this excludes accessible vehicles provided by unregulated companies operating outside of the taxi industry.)

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:06 AM Page 17

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! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:06 AM Page 18

feature

Max Meijer Continued from page 10

New Service Available through Kingston General Hospital to Transform Care for Patients and Families Device to improve quality of life for Ontarians requiring ventilator assistance

By John Pereira, Communications Specialist, Kingston General Hospital

T

he simple act of clearing your throat or coughing is second nature to most, but for people with long-term disabilities or illnesses that require mechanical ventilation, it can be difficult or even impossible. To keep their airways clear, patients must undergo regular treatments that are uncomfortable and can lead to complications such as infection. But, come April 1, eligible patients across the province will be able to access a specialized device that makes the process easier and may reduce visits to the emergency room.

Supported by new and ongoing funding from the Ministry of Health and Long-Term Care’s (MOHLTC) Assistive Devices Program, the CoughAssist E70 device will be available through the Ontario Ventilator Equipment Pool (VEP), operated by Kingston General Hospital (KGH).

The device has multiple benefits for patients who are unable to cough or whose cough is ineffective due to muscle weakness.

18

• Outspoken! • Spring 2014

These include: • Allowing patients to experience a comfortable and natural cough.

• Offering patients freedom to complete their treatment where they choose with the device’s battery power option.

• Reducing risk of infection. The device uses positive and negative pressure to remove secretions or mucus from the patient’s lungs. The technique replaces more invasive procedures that can lead to infection.

• Helping healthcare providers assess therapy efficacy with built-in data management tools, allowing customization based on patients’ unique needs.

The new patient and family-centred service available through KGH is welcome news to organizations that support patients with muscular dystrophy and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.

The device also has positive implications for Ontario’s hospitals. Because the device is non-invasive, the potential for infection is reduced, which means fewer patient visits to the Emergency Department and admissions to hospital.

Deb Matthews, Minister of Health and Long-Term Care said, “This initiative will significantly improve quality of life for patients who need mechanical ventilation and also reduce visits to the emergency room. We are proud to partner with KGH to ensure these patients get the right care at the right time and in the right place.”

Regina Pizzuti, Manager, Ventilator Equipment Pool at KGH commented “We are proud to partner with the Ministry of Health and Long-Term Care in our continued effort to offer services that transform the patient experience for patients and families at KGH and across the province.”

Patients, physicians and healthcare providers who would like more information are asked to contact Regina Pizzuti, Manager, Ventilator Equipment Pool at 1-800-633-8977. ●

Max also volunteers with Rose Cottage Visiting Volunteers. This organization supports individuals and families dealing with a life threatening illness.

Currently, Max is working full time as a real-estate agent in the Niagara area. When asked how he juggles between work, volunteering, and his interests; he said a balance between activities is the key. He said that every moment of the day should be used to serve in some meaningful way. 2014 marks the ninth year since Max became a Peer Support volunteer. We also asked him how he is able to stay so committed as a volunteer. He replied, the most important reason that he knows is, “how important it is for people with a spinal cord injury to meet and speak with volunteers with similar experiences. They need to be encouraged and learn that there is life after a spinal cord injury, and better yet, that in many cases life can be good after a spinal cord injury. They need to realize the importance of cooperating with, and understanding those who support you, such as family members and professionals. Helping others has mutual benefits. When you try your best to help others make their life better, this in turn will also make your own life better.” Max says having a positive attitude is the most important thing. There will be a multitude of challenges after a spinal cord injury, but people should always be encouraged to see the positive things, the reasons for gratitude in each new day.

Max was awarded 2012 Peer Support Volunteer of the Year for the Hamilton-Niagara region by SCI Ontario. He is also nominated for the T. Roy. Adams Humanitarian Award this year. The prestigious award honours a resident of Niagara for their dedication to community services; to a person who sees volunteerism as an integral part of their life. Volunteering is not just a pastime activity, it requires dedication and commitment; ultimately, it is a chosen lifestyle. ●

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:06 AM Page 19

feature

You Talk. We listen!

Your opinions matter to us! In an effort to meet the needs of our readership we ask that you fill out this short survey and mail it back to us at Outspoken Survey, 520 Sutherland Drive, Toronto, ON M4G 3V9

Or go online to complete the survey at: surveymonkey.com/s/outspokensurvey2014 Thank you in advance for providing us with your feedback!

1

How long have you received Outspoken?

❍ This is my first issue ❍ Less than 1 year ❍ 1-2 years ❍ 3-5 years ❍ 5-9 years ❍ Over 10 years 2

You read Outspoken because you…(please check all that apply)

❍ Have a spinal cord injury or other physical disability

❍ Are a healthcare professional ❍ Are a government worker ❍ Are a corporate sponsor ❍ Are an advertiser or potential

advertiser ❍ Are an SCI Ontario board member ❍ Are an event participant ❍ Are a volunteer ❍ Are a donor ❍ Are a member of SCI Ontario ❍ Other ____________________ (please describe)

3

Approximately how much time do you spend looking through each issue of Outspoken?

❍ Less than 15 minutes ❍ 15-59 minutes ❍ 1 -2 hours ❍ Over 2 hours 4

5

Would you consider buying an item from one of Outspoken’s advertisers?

❍ Yes 6

Have you ever bought an item or service from one of the Outspoken advertisers?

❍ Often ❍ Never 7

❍ Sometimes

How many others do you share your copy of Outspoken with?

❍ None ❍ 3-4 8

❍ No

❍ 1-2 ❍ 5 or more

For how long do you keep your copies of the Outspoken?

Less than one month ❍ 1-3 months ❍ 4-6 months ❍ 7-12 months ❍ Over a year ❍ Forever

9

How would you rate the overall layout of Outspoken?

❍ Excellent ❍ Good ❍ Fair ❍ Poor ❍ What, if anything, would you change?

11 How would you rate Outspoken compared to other magazines/journals of similar content?

❍ Excellent ❍ Fair

❍ Good ❍ Poor

12 How often do you use information from Outspoken in your personal life?

❍ Often ❍ Rarely

❍ Sometimes ❍ Never

13 What article topics do you enjoy the most?

Pick your top 3.

❍ Travel ❍ Sports ❍ Technology ❍ Gardening ❍ Assistive devices ❍ Research ❍ Events ❍ Personal stories ❍ Advocacy/Public policy ❍ Government relations ❍ Books ❍ Movies/Films ❍ Outdoor adventure ❍ Sexuality ❍ Employment ❍ Education ❍ Transportation ❍ Self-Help ❍ Housing ❍ Attendant Services ❍ SCI Ontario updates ❍ Parenting ❍ Family issues ❍ Money and Finance ❍ Humour ❍ Reflective/inspirational ❍ Mental health ❍ Beauty/Body image ❍ Other:

How much of each issue of Outspoken do you read?

✃

a digital version of Outspoken?

❍ Yes ❍ Sometimes

❍ No

16 If Outspoken was to change over to a subscription-based magazine, would you consider subscribing?

❍ Yes ❍ Maybe

❍ No

17 Are you… ❍ Male

❍ Female

18 Are you… ❍ 16-25 ❍ 36-45 ❍ 56-65

❍ 26-35 ❍ 46-55 ❍ Over 65

19 What is your annual household income?

❍ Less than $25,000 ❍ $25,000 – $50,000 ❍ $50,000 – $75,000 ❍ $75,000 - $100,000 ❍ $100,000+

20 Do you have any further comments about Outspoken?

Optional: If you would like to be entered into a draw to receive a prize from SCI Ontario, please complete the following: Name Address

City

❍ Skim issue and read 1-2 articles of relevance ❍ 3-5 articles ❍ 6-10 articles ❍ Read the entire issue ❍ Don’t read it

15 Would you prefer to read

Postal Code

10 How would you rate the timeliness of articles presented in Outspoken?

❍ Excellent ❍ Fair

❍ Good ❍ Poor

14 How much money do you spend on magazines a month?

❍ Under $5 ❍ $10-20

❍ $5-10 ❍ Over $20

Email

❍ I’d like to receive updates on information and events from SCI Ontario.

Thank you for your time.

SCI Ontario

• 19

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:06 AM Page 20

feature

By Dustin Kahn, B.Sc. (Kin), M.F.Sc., CEP, and Rich VanderWal, B.R.L.S., T.R.C.

BACK

Get Into High Gear For Summer

S

pring has finally sprung and the hibernation from the ice storm and polar vortex is over. Our serotonin levels are going back up, vitamin D reserves are beginning to replenish and the muscle/joint ache and stiffness from cold is finally going away. It’s finally time to GET OUTSIDE and MOVE! In preparation for a summer of looking, feeling and functioning better, now is the perfect time to consider handcycling as your new activity.

Whether you’re considering purchasing your first cycle, plan to complete your first race/ride or are a seasoned pro, we thought we’d share some specific exercises, stretches and workouts to help you reach your goals this season.

RESISTENCE EXERCISES • Focus on high rep/low weight when starting a training program • When you can do more than 20 reps for the high rep exercises increase weight • Choose 2 exercises/muscle group with 3 sets each/strength day • 2:1 ratio for high reps (15-20)/low weight days and low reps (8-12)/high weight days

REAR FLY – Sitting bent over at waist, extend arms in front of chest with hands facing together. Keeping arms nearly straight, bring arms out to side focusing on squeezing the shoulder blades together.

LAT PULL DOWN – With arms extended overhead, place hands wider than shoulder width and pull body up or bar down to below chin level.

SEATED ROW – Sitting upright or bent over at waist while seated, extend arms in front of chest. Against resistance, draw elbows straight back to slightly behind the back.

POSTURAL – Sitting bent over or lying prone place arms in – Y’s, T’s, W’s position and hold 2-5 lb. weights for 10-30 sec. intervals.

SHOULDERS SHOULDER PRESS – One arm at a time or both together bring arms to 90 degrees at shoulder height. Extend arm straight up above shoulder of same side and return to 90 degrees.

SHOULDER FLY – Sitting, with arms down to your side, keeping them extended, begin to raise arms to just above shoulder level and slowly return to arms down to your side.

ARM CIRCLES – Choose weight that you can hold for 25-45 seconds with arms extended sideways at shoulder level; begin to do circles beginning small and slowly increasing the diameter of the circle.

ARMS

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www.neurocore.ca 9140 Leslie Street, Unit 107, Richmond Hill, ON L4B 0A9

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20

• Outspoken! • Spring 2014

BICEP CURLS – With one or both arms together begin with arm extended down to side.

Begin to bend elbow bringing palm up to shoulder, slowly return arm down to side.

TRICEP EXTENSION – Begin with weight or resistance band in hand with arm bent, hand behind head and flexed elbow pointing up.

Keeping elbow in same position, begin to extend arm straight up above head. Slowly return hand down behind head.

WRIST FLEXION - Sitting with lower arm resting on lap, face palm of hand UP holding weight and roll wrist up to max range and slowly lower.

WRIST EXTENSION – Sitting with lower arm resting on lap, face palm of hand DOWN holding weight and extend wrist up to max range and slowly lower.

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:07 AM Page 21

STRETCHING

RHOMBOIDS/LATS – Sitting on chair facing a desk or on floor facing your wheelchair. With hands shoulder width apart, reach forward with arms extended and begin to bend at the waist so arms extend straight above head.

TRAPEZIUS – With arms extended straight to sides and shoulders relaxed and dropped, tilt head sideways bringing ear down to shoulder. Repeat on both right and left sides.

WRIST FLEXORS – Extend arm in front of body with palm facing up. Keeping arm straight, begin extend hand, pressuring fingers down and back till stretch is felt in the top of forearm and bicep.

WRIST EXTENSORS – Extend arm in front of body with palm facing down.

Keeping arm straight begin to apply pressure to hand at the wrist pushing down and back toward your body.

• Hold the stretches for 1525 seconds each for 2 sets.

• Should be done after a workout as a cool down, or on days off. NOT before the workout.

Ride Workouts Endurance rides – 1-2 hrs. at 50-60% of max. heart rate (HR) Speed/power rides – 25-45 min. at 65-80% of max. HR

At some point, everyone can use a hand.

Interval rides – total of 1-2 hrs. 30 sec.–2 min. at 70-100% of max. HR, then 3-5 min. at 50-60% of max. HR • When starting a new training program begin with lower duration and intensity focusing on endurance, NOT speed or power.

• As endurance improves, increase “high-intensity” portion of workout and decrease “low-intensity” portion of workout.

• Try and include at least 2 endurance rides and 1 speed and power ride / week.

• Can substitute a speed/power ride with interval ride when endurance improves. ● More information on handcycling, upcoming events near you and a listing of affordable handcycles for sale can be found at www.handcycling.ca.

Dustin Kahn is a Certified Exercise Physiologist at Neurocore Physiotherapy Inc. His focus is to assist clients meet their rehab training and fitness goals.

Dustin@neurocorephysiotherapy.com Rich VanderWal is a co-founder and Recreation Therapist of Neurocore

Rich@neurocorephysiotherapy.com

If you’ve been seriously injured we can help. Our focus is on your needs - there’s no reason to go through a major trauma alone.

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SCI Ontario

• 21

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:07 AM Page 22

feature

Women with Disabilities Share their Stories of their Path to Physical and Emotional Wellness

Sally Thomas Sally, who has spina bifida and lives in Ottawa, became involved in ju-jitsu, a form of martial arts, which was suggested by a friend. She also wanted to learn about self-defense techniques for

By Mary Dufton

A positive body image is a big part of our self esteem. We all strive to feel good about ourselves. But what happens when you are born with a disability and were bullied endlessly by your peers because you were perceived as different and felt like you did not belong?

W

hat if you were able-bodied and suddenly one day you sustained an injury and acquired a disability? Does your perception of yourself change? Maybe you were physically active before your injury and still want to be? How do you return to doing what you were passionate about? Most of all, how do you learn to feel good about yourself, make the most of your abilities and strengths and show your best self to the world?

I spoke to four women with disabilities ranging from their 20’s to their 50’s about these issues: Sally Thomas, a former competitive power lifter, Alexandra Houle, a passionate martial arts enthusiast, Andrea Andrecyk, a lover of sports and the outdoors, and Elizabeth Winkelaar, a dancer, who found a new way to dance using her wheelchair. They shared their experiences with me, about how physical activity has helped them feel better not only emotionally, but physically and in some cases, has enhanced their self esteem, too.

22

• Outspoken! • Spring 2014

women with disabilities while at the same time, learn to deal with her negative feelings from years of school bullying which affected her selfimage and self-worth.

Sally explained, “The initial attraction to jujitsu for me was that it was already rooted in hand techniques so it didn’t need to be adapted as much as some of the other martial arts programs. The Sensei (teacher) basically just eliminated the foot techniques and taught us more hand techniques per belt than was customary. It was a rush to be able to control people’s actions that were much bigger than me! Controlled aggression was encouraged!”

Sally was involved in two ju-jitsu programs at different times, and both were primarily for people without disabilities, but she and other participants with disabilities were accepted by other members of both clubs who were helpful in their training. “In both cases, we had our own class, which was specifically for people with different abilities, but the clubs themselves were integrated.”

“We met on the weekend because our Senseis had full-time jobs elsewhere. It was also difficult to find people who had the experience to be yukis (attackers) and would let us throw them around.”

Although the program is no longer operating, Sally loved it and accomplished a lot. I got to the blue belt and learned enough to be able to envision being a black belt. I found that very intriguing! There are a few men in wheelchairs who are black belts in various forms of martial arts, but as far as I know, there aren’t any women. I also thought one day I could be a

sensei, parlaying it into employment.”

Sally thinks martial arts are a great way of empowering people to be able to protect themselves from attackers. For her it was a great form of exercise, combining strength, flexibility and cardio. In addition, it taught her to focus and gave her a much greater sense of confidence. “I routinely used techniques learned in martial arts as an elite athlete in power lifting. There were many times I was able to get better results lifting by using calming techniques to suppress my nerves.” Although her days of martial arts are behind her, she is still physically active. She plays basketball once a week and works out a few times a week. She also has been painting, using artwork as a form of self expression and healing, helping her deal with occasional bouts of depression. Sally has even had her art work on display in local art shows and at fundraisers.

Alexandra Houle Like Sally, Alexandra also has spina bifida, uses a wheelchair and was bullied at school. Alexandra, practices martial arts, too, but she is a karate enthusiast, practicing three times a week at a

studio in the west end of Ottawa. She has been involved with karate for over seven years after it was suggested by her mother. She currently has her brown belt but is working toward her black belt. Although the facility is not for people with disabilities, she practices the movements from her wheelchair using her upper body.

Alexandra really enjoys the sport as it has given her self confidence on a physical and emotional level and has helped her overcome the effects of bullying. “Before I started karate, I quit

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school because of the impact of bullying on my self-esteem. But because of karate, I have more self confidence, having learned to do something that I did not think I could. I also feel more self confident and am happier with my body for the strength I have gained from karate. I am now going back to school and credit my decision to my years of karate. I have also made some good friends through the program which has been great.” Alexandra also participates in a monthly support group for people with spina bifida in the Ottawa area, along with Sally, which she also enjoys for the opportunity to talk to others who share her disability and the chance to socialize.

Andrea Andrecyk Andrea, who lives in Athens, Ontario, has used a wheelchair for 25 years. She contracted a virus called Transverse Myelitis when she was 12 years old. Before she was involved in adaptive sports,

Andrea has also become a competitive athlete. Throughout her connection with adaptive sport, she has competed in two World Adaptive Water ski competitions in Belgium and Australia, winning three bronze medals for Canada. Today, Andrea works at Spinal Cord Injury Ontario in the Ottawa regional office, as a Peer Support Coordinator.

“I have a career that I love. I also public speak at Queen’s University and St. Lawrence College, educating students on the importance of keeping active while living with a disability. I have met people from all walks of life, some of whom I call very good friends.”

“Involvement in sports has made me the confident woman that I am today. When I am playing any of my activities, I feel exhilarated, powerful and most of all equal to everyone else.

We are all on the same ‘playing ground,’ enjoying life to the fullest by being active and allowing our endorphins to run wild. I truly believe that living a physically active lifestyle is the secret to confidence and happiness in life.”

“Being a woman who uses a wheelchair, I think it is important to inspire other women of all abilities to get involved in physical activity no matter how intense. It is not only good for your body and self-image, but it is also good for your soul. I am living proof.”

Elizabeth Winkelaar Elizabeth, of Ottawa, sustained a spinal cord injury at the age of 18 from a motorcycle accident. She was just completing her Master's degree at Carleton, studying gender and disability she said that her level of confidence and selfesteem was fairly low. When Andrea turned 21, she saw adaptive downhill skiing on television and then searched for it on the Internet. From there, she was connected with another adaptive skier, Chris Bourne who introduced her to the world of adapted skiing. She joined the Canadian Association of Disabled Skiers (CADS) an adaptive downhill ski program at Edelweiss Valley Ski Resort in Wakefield, Quebec. “It was one of the most thrilling experiences of my life,” Andrea said.

Not only did Andrea try a new sport, but she made friends with others with disabilities and became inspired to try many other adaptive sports. Now, her activities range from slalom and trick water-skiing, downhill skiing, cross country skiing, swimming, kayaking, sledge hockey, hand cycling and curling.“These activities have undoubtedly been the secret to my successes in my life. They have kept me healthy, and in good shape physically and mentally.”

with pain and fatigue.

“Then one day, about nine years ago now, I was wheeling the halls and I saw a poster for Propeller Dance. The poster said: If you can breathe, you can dance!, so I thought, this is for me; I can do this.”

“Before my injury, I loved dance and had taken dance lessons (ballet, jazz, and disco). After my injury, I did not think of dance as an option; I felt my dancing days were over and that made me really sad.”

Over the years Elizabeth’s involvement with Propeller Dance has grown. She started in the recreational program for several years and then was invited to join the performance group. This invitation has been a bit of a life-changer for her as there is tremendous commitment involved.

She also goes to fitness and yoga at least three times a week. “Keeping fit enough to dance is a huge motivation for me to get out there and exercise.” She says.

“My work with Propeller gives me teaching opportunities, working with people of all abilities and ages. Currently, I am helping to develop our seniors program, which is turning more into a sunshine program as we have people of all ages joining up. Propeller has given me the opportunity to dance, to grow as an artist and choreographer, to take dance training, just to name a few of the benefits to me as an artist. The next project is a tour to Kitchener, then the end of March we have our Emerging choreographer’s show. My piece is called “Spasticus” and is inspired by the work of Ian Dury and the fight for disability rights.”

Clearly, there are many benefits to physical activities of all kinds – whether you like sports, dancing, or martial arts, it doesn’t matter what it is. What matters is finding out what you like to do, finding a way to do it. The rewards are endless. ●

For more information on the organizations mentioned in this article you can contact:

in Canada when she first heard about propeller dance, a local dance troupe for people with disabilities. She explains, “This was very cerebral work; all brain work and my body was hurting and neglected. I joined some fitness classes to strengthen myself and that helped quite a bit

Canadian Association of Disabled Skiers:

www.disabledskiing.ca Sirota's Alchymy and Life Skills Centre (Adaptive Jujitsu) www.adaptivejujitsu.com Propeller Dance: www.Propellerdance.com

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feature

Words That Hurt

By Dan Harvey, Peer Support Coordinator

On May 24, 2003, I fell off a trampoline, fractured the fourth vertebrae in my cervical spine, and damaged my spinal cord. The first article about my injury was published five days later. I did not meet with the journalist, but the end product explained the basics; I was a 17-year-old high school student; I was on a high school field trip; I fell from a trampoline; a trust fund had been set up; and I experienced a serious spinal cord injury.

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hroughout the summer of 2003, I met with a number of journalists who wanted to write about me. At the time, I fed off of the attention, and gladly welcomed every small town newspaper into my hospital room. However, as I look back at some of those articles today, I realize that I was occasionally simply a prop surrounded by the stereotypical and negative language about disability.

In the world of news media, language can have an enormous impact on society. This is highlighted in Beth A. Haller’s book, Representing Disability in an Ableist World: Essays on Mass Media, when she explains, “the words used to refer to a group of people are important: they have

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ramifications for self-perception, but they also play a large role in shaping what the general public believes about the group.” This is the enormous hurdle that I, as a person with a disability, face every morning when I open the newspaper. If stories about spinal cord injury and disability are represented in the news media in a way that produces stereotypes, negative images, or inaccurate facts, both the general public and people with disabilities will believe that the inaccuracies are a reality.

However, before we deal with the facts, it is important to deal with basic language terms. As Holler outlines, “Since the 1980’s, the disability rights movement has been trying to move from the term

“handicapped,”… to “people with disabilities,” which is known as “people first” terminology.” This is an important first step in a language shift. As advocates for “people first” terminology often highlight, it is important to acknowledge the person before the disability because, otherwise, you are turning the subject into an object. Instead of seeing a person, the language views the individual as a mobility device.

This leads us into other types of negative terminology that are often used by news media. The media often reinforce the “sick role” through language like “stricken” as in “stricken with polio” or the “helpless victim” narrative when the individual with a disability is a “victim of,” or “suffering from,” or “afflicted with.” Most notably, this victim language can certainly be seen in the most popular stereotyping phrases that the news media turn to: “wheelchair-bound” or “confined to a wheelchair.” In fact, problematic terminology like “wheelchair-bound” and “confined to a wheelchair” is highlighted in the Associated Press Stylebook as terms that should not be used because, “people use wheelchairs for independent mobility.” Furthermore, the Stylebook tells journalists, “not to write about a person’s disability unless it is pertinent to the story.”

According to the dictionary, using language like “confined,” or “bound,” suggests that the individual is “tied,” and “shut up, as a prison.” Negative terminology like that simply defies reality. Just like me, every person who uses a wheelchair leaves their mobility device for a variety of reasons: sleep, travel, driving, swimming, recreation, comfort, or even sex. As Haller correctly highlights, “When journalists use these terms, they misrepresent disability, as well as showing their misunderstanding of the disability experience. Wheelchairs are not binding or confining but actually increase mobility, speed, and ability. For many people, wheelchairs increase their personal freedom.”

In 2003, the many articles about me often referred to me as “wheelchair-bound” or “confined to a wheelchair,” but they also followed the stereotypical narrative of “overcoming the odds.” Some of these inspirational stories can certainly be presented well; however, according to Haller, the stories more than often, “serve to undermine disability identity with their syrupy messages infused with pity.”

Ultimately, during the past 11 years, I have had time to reflect and analyze the way in which I have been portrayed in the news media.

Negative and stereotypical terminology can have a detrimental effect on the self-images of people with disabilities, and many people can internalize the labels that they see in newspapers and on television news, which can perpetuate issues with identity. Thankfully, some recent studies show a slight improvement in the disability-related discourse in news media; however, I look forward to the day when I can pick up a newspaper and see that I am not “confined,” or “bound,” but “able.” ●

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MIKE SAVICKI National Mobility Awareness Month Spokesperson

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! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:07 AM Page 26

lished 1991 ab

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what’s on!

Calendar of Events

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LONDON EVENTS Location: Parkwood Hospital Room 467A, 801 Commissioners Rd. E., London, ON Contact/R.S.V.P to Dan Harvey, (T) 519-433-2331 X 224, dan.harvey@sciontario.org

Spinal Cord Injury and the Internet Date: Wednesday, April 23 Time: Noon - 1:00 p.m.

Please R.S.V.P. by April 21 The Internet can be a great resource for information about life after a spinal cord injury. Join us for a discussion with Britt Martin, the founder of the website SPINALpedia, and find out how her website is providing important information about SCI via YouTube videos and social networking.

Lunch will be provided.

Accessible Houses Date: Wednesday, May 21 Time: Noon - 1:00 p.m.

Please R.S.V.P. by May 19 Are you planning on modifying, building, or purchasing an accessible house? If so, this information session is for you. Peggy Stewart from www.accessiblehouses.ca and Royal LePage Triland Realty will share a few tips about buying and modifying. Lunch will be provided.

TORONTO EVENTS Drop in to share ideas, discuss issues and spend time with your peers!

Location: Lyndhurst Centre, 520 Sutherland Drive, Toronto For more information contact Christine Selinger, (T) 416 422-5644 ext. 265, christine.selinger@sciontario.org

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Find more events online at www.sciontario.org/events

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By Lynn Miňeque

TO URN

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We are excited to announce that the 24th annual Barbara Turnbull Open Golf Tournament will be held on Thursday, June 6, 2014, at Emerald Hills Golf Club in Stouffville.

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e are thrilled that once again the Provincial Building & Construction Trades Council of Ontario will be the event sponsor of the tournament.

The tournament is held annually by SCI Ontario to raise funds for spinal cord injury rehabilitation and research at the Toronto Western Hospital, under the direction of the globally renowned neurosurgeon, Dr. Charles Tator.

Emerald Hills Golf Club is one of the original four founding courses of ClubLink when the company began in 1993. Emerald Hills is a leafy sanctuary of golf in one of the most revered natural areas around Greater Toronto. Originally opened in 1982, the course takes maximum advantage of the ruggedly gorgeous Oak Ridges Moraine. In 2005, acclaimed designer Thomas McBroom inlaid nine additional inland links holes into the mix, bringing Emerald Hills to 27 holes. Only 35 minutes from downtown Toronto, Emerald Hills makes you feel like you’re a world away from everything else – except great golf!

For further information about the tournament and to register or sponsor the event please contact Lynn Miñeque, at 416-422-5644 Ext. 221 or lynn.mineque@sciontario.org

COMMUNITY EVENT IN COLDWATER, ON For 10 years, the Ladies Annual Bonspiel at the Coldwater & District Curling Club has hosted a curling event for charity.

By Sheila Daniel, Development Officer

Travel Date: Thursday, April 24 Time: 6:30 - 8:00 p.m.

Vehicle Modification Fair & BBQ Date: Thursday, May 29 Time: 5:30 - 8:00 p.m.

SportFest Date: Thursday, June 26 Time: 6:30 - 8:00 p.m.

Family Fun Carnival & Picnic Date: Thursday, July 31 Time: 3:00 - 4:30 p.m.

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T

Left: Winning team – Barb Brinkmann, Nancy Hunter, Joan Bourrie and Sally Sinclair Above: Fashion show models – Anne Lockhart is wearing the lips and Darja Morley is wearing the toasted western outfit

his year it was decided to support Sherry Middaugh’s team’s two charities, of which one is SCI Ontario. The bonspiel raised more than $5,000. The crazy fashion show helped to add to all the fun and frolic of the day.

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:07 AM Page 27

Photos by Robert Blakely

By Lynn Miňeque, Manager Special Events

F

ebruary 13, was a fabulous day at Craigleith Ski Club in Collingwood for our fourteenth annual Ski & Snowboard Day. The sun was shining, the ski conditions were incredible and the guests all had a great time. Thanks to everyone who participated in our Ski Day by being a sponsor, donating a prize/auction item or skiing and snowboarding, helping us raise a record breaking $87,000.

We are pleased to announce the winner of the “Masters Golf Raffle” for two tickets to the Masters Golf in Augusta, Georgia in April for a fabulous four day weekend including accommodations, meals, golf and a day at the Masters – Matthew McWatters. Congratulations and enjoy your weekend!

Ottawa Champagne Auction & Dinner

By Sarah McKinnon, Development Officer

Many thanks to the Canadian Association for Disabled Skiing Ontario Division and Ontario Track3 Ski Association for their generous commitment of time and expertise to bring their adapted equipment and trained volunteers. They were able to accommodate a dozen of our members to try the bi-skis for the first time and become hooked on the sport.

The experience for the individuals was amazing

Thank you!

SCI Ontario would like to extend a heartfelt thanks to our corporate sponsors, table sponsors, guests, live and silent auction donors, and volunteers for making the Ottawa Champagne Auction & Dinner on March 20 a success.

Presenting Sponsor

Special Thanks to Our Generous Sponsors Après Ski Sponsor

Media Sponsor Lunch Sponsor

Silver Sponsor

Making Dreams Possible Sponsor

and everyone was thrilled with the opportunity.

I would also like to thank our very hardworking organizing committee of the event with Tom Scanlan and Brian Grant as the CoChairs of the committee and the following dedicated individuals: Jamie Church, Alan Cogill, Kevin Holmes, Anthony Lue, Domenic Marchese, Marco Marrone, Tom Opara, Duncan Sinclair and Kaitlin Van Osch.

Zipper Chair Sponsors DOUGLAS & RUTH GRANT

Gift Sponsors

Bronze Sponsors

Community Sponsors ABC Recreation Ltd. Ambler & Co. Inc. Atlas Dewatering Corporation Beacon Utility Contractors

Bruce Wilson Landscaping Ltd. Dufferin Aggregates Furfari Paving Co. Ltd. Hermann’s Contracting Human Care Group

Invacare Canada L.P. Ipex Inc. LUINA Local 183 UCC Group Inc. Wolseley Canada Inc.

SCI Ontario

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feature

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Enhancing Inclusion: ATTENDANT SERVICES IN ONTARIO PUBLIC POLICY SUMMIT AND WEBINAR By Mary Dufton Generously sponsored by the Personal Injury Alliance 4

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5

n January, the Personal Injury Alliance (http://pialaw.ca) and SCI Ontario partnered to present the first Public Policy Summit and webinar – Enhancing Inclusion: Attendant Services in Ontario.

The event featured a keynote address from His Honour David Onley, Lieutenant Governor of Ontario, as well as input on the issues facing people using attendant services in Ontario by an exceptional panel. Jim Vigmond from Oatley, Vigmond Personal Injury Lawyers and the Personal Injury Alliance, was the moderator. Here are a few photos from the day.

1. Bill Adair, CEO of SCI Ontario and Jim Vigmond of Oatley and Vigmond Personal Injury Lawyers discuss the Summit with His Honour David Onley, Lieutenant Governor of Ontario (TOP PHOTO) 2. Mary Ann McColl, Advocacy Committee Chair, SCI Ontario; His Honour David Onley, Lieutenant Governor of Ontario; Bob Nigol, Chair of SCI Ontario Board of Directors, Bill Adair, CEO, SCI Ontario 3. The amazing and informative panel who responded to questions from the over 300 people in attendance at the event and on the live webinar, as well as spoke about issues pertaining to attendant services in Ontario 4. His Honour David Onley, Lieutenant Governor of Ontario gives the opening address 5. Peter Athanasopoulos, Manager of Public Policy and Government Relations, SCI Ontario 6. Jim Vigmond, the gracious and knowledgable moderator from Oatley Vigmond Personal Injury Lawyers

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Helps the catheter bypass environmental bacteria

Call for Trial Samples: Phone: 1.800.263.7400 Hollister Limited 95 Mary St. Aurora a, ON L4G G 1G3

The Advance intermittent catheter is a hygienic, pre-lubricated gel catheter that helps you manage your daily routine with conďŹ dence. Recommended by your clinician, it is designed to help you catheterise easily.

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:07 AM Page 30

feature

By Jeffrey Kerr

I have specialized in accessible real estate for many years. But it is more than connecting a seller of a wheel friendly or barrier-free home with the right buyer.

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ver the years I have learned that every client is unique. Accessible to one individual may not be viewed the same by another; needs vary from one situation to the next. I find it rewarding to help a buyer look beyond the initial visit to a home that’s listed for sale to being able to see the potential for renovations that can provide unique solutions for the whole family.

Accessibility may be needed for immediate needs or with a view to the future; it may be needed for a family member regardless of age or even an occasional visitor.

I’ve put together a list of features to consider

when looking for a house or condominium to renovate. I also asked Randy Sora, Design / Management Consultant from EZaccess Inc. for his input.

Everyone is familiar with the real estate adage “Location, Location, Location!” The perfect home cannot score a 10 unless the neighbourhood suits your needs as well.

Make a list of the amenities you would like: local transit, library, grocery store, pharmacy, medical clinics, schools, parks, church…

Now prioritize the items on that list so you don’t forget which ones you really do need to

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Tips for Finding the Perfect Wheelchair Accessible House or Condo to Renovate

make the location the right one. And remember, even if all of the amenities are close by, you may also have to assess the level of accessibility for each. A feature as simple as curb cuts can make all the difference in the world.

Looking for a house?

Look for a home that has the potential to meet your long term needs. Allow for family growth and aging, taking into consideration both functional and spatial needs that may be required 10-15 years from now. Buying a home with a bit more space can be far more cost effective than building an addition in the future.

Ideally, look for a home that has an attached double car garage, allowing direct access into the home – a definite benefit in inclement weather.

An open concept bungalow style home is

ideal for many. A kitchen with a view of the family room is a bonus when friends and family are visiting. But having said that, don’t rule out two-story home accessed through an elevating device. They can actually offer more square footage for a comparable price once you factor in the cost to build and land values.

There are also a few features that can make a two-story home more accessible for visitors.

Consider an accessible entry way, interior doors that are 86 cm or 34 inches wide to allow easy passage for a person using a wheelchair and a half or full accessible bathroom.

I ask my clients to consider what space may be required to accommodate not only expansion and reconfiguration opportunities, but also social space. Remember, you may have more visitors if your home is accessible!

Purchasing a condo?

The building itself must be accessible, including features in the common elements that are beneficial to everyone in the family. Consider the entrance, social spaces and recreation facilities.

Carpeting in the lobby may look nice but makes it harder to navigate with a wheelchair. The underground parking may need to accommodate the height of your vehicle, transfer space and include an accessible path to enter the building.

If possible, purchase a unit below the seventh floor with a balcony situated over a fire route.

Aerial ladders can only reach to that level and the vehicle must be able to gain access from below.

Plumbing is very difficult and expensive to relocate in a condo so ensure the washroom has adequate space or room for expansion while utilizing the floor drains as they currently exist.

It does not matter if you are looking for a house or a condo – a trained eye can help you see the potential of the property to accommodate your specific situation. ● For more information on buying and selling wheel friendly, barrier free real estate or to discuss investing in wheel friendly rental accommodations contact: Jeffrey Kerr, Broker, RE/MAX Unique Inc. Tel: 416-424-2222, Email: info@AccessibleHomeFinder.com Website: www.AccessibleHomeFinder.com Randy Sora can be reached at 905-837-2623 or ezaccess@rogers.com.

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feature

SCI Ontario Board Member Bernard Gluckstein, Receives King Clancy Award

The Honourable David C. Onley, Lieutenant Governor of Ontario, Bernard Gluckstein, and Vim Kochhar.

Bernard Gluckstein was Canada's first Personal Injury Lawyer to be presented the King Clancy Humanitarian Award!

B

ernard Gluckstein has served on the SCI Ontario Board of Directors since 2002. He is presently a member of the Governance and Nominations committee. He has also had a team the Wheelchair Relay Challenge for 10 years and attended many of our other events. For this reason, it comes as no surprise that Bernie should be the recipient of this award.

He was honoured by the Canadian Foundation for Physically Disabled Persons with the presentation of the award at the 30th Great Valentine Gala held on February 8, 2014, at the Westin Harbour Castle Hotel, Toronto.

The King Clancy Award was established in November 1986, by the Canadian Foundation for Physically Disabled Persons to commemorate the contributions of King Clancy as an inspirational humanitarian. The Award is presented to distinguished Canadians who have made significant contributions in assisting citizens with disabilities to achieve a more rewarding lifestyle. Through their efforts, these individuals have helped to increase public awareness about the potential of

people with disabilities and have inspired others to become active and contributing members of society. Previous King Clancy Award recipients include Canada’s medal winning athletes of the Paralympic Games, The Honourable Joyce Fairbairn, Joanne Smith, Kurt Browning, David

“I am very flattered and humbled to be chosen for this award.

It will be the highlight of my career.”

Bernard Gluckstein Onley, Barbara Turnbull, Terry Fox, Rick Hansen, Ron Turcott and numerous others.

For 52 years, Bernard has been a staunch advocate for people with disabilities, donating his time and expertise in the area of disability to numerous organizations including Spinal Cord

Injury Ontario, Variety Village, Canadian Games for the Physically Disabled, and the Paralympic Games. Bernard is also one of the founding Directors of the Ontario Brain Injury Association, which was formed to enhance the lives of Ontarians living with the effects of acquired brain injury through education, awareness and support.

In addition to his work with Paralympians and his support of many other athletes with disabilities, Bernard was part of the team that raised $1,000,000 for the construction of the Sunshine Indoor Pool at Variety Village.

His firm, Gluckstein Personal Injury Lawyers, is a lead sponsor of many annual conferences, symposia and social events for associations and foundations connected with disability issues. The firm has also built waiting rooms and lounges for patients, visitors, family and medical staff at seven major Ontario hospitals.

“I am very flattered and humbled to be chosen for this award. It will be the highlight of my career,” says Bernard. ●

SCI Ontario

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feature

BORNE Continued from page 15

By Darren Lillington, Regional Services Coordinator

In the early days of the twenty-first century, we are a culture of people who are always in search of a new product that will cover our wrinkles, change our graying hair to its long past youthful colour and make our skin feel like the softness of a newborn. We could rightfully be categorized as plastic people, always putting on a false facade.

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hen Bill Horner sat down to write the story of his life there was no makeup applied, no airbrushing permitted and for sure he is not a plastic person. For you see, in The Last Dance Is Mine, Bill has thrown open the gates of his inner soul and with the extreme dignity and courage has permitted us to follow the progression of a disease that took hold and ravaged his body when he was at the prime of his life.

Sickness of a long duration carries forth its own bag of tricks, which can be difficult enough for people who are elderly, but when you are a young man with a growing family, sickness can lead to unemployment, financial insecurity, tension between parents and children, and then the realization that the flame of what was once a strong relationship has now become nothing more than a few ashes in a bowl.

All of these emotions are vivid and very up front and during the course of the book, which spans many years. Bill describes in emotional detail what it feels like to walk on legs that will not cooperate, the total exhaustion felt from merely putting on a shirt, to his feelings of loss of dignity by being unable to provide for his own sanitary care.

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Divorce, followed by extreme periods of loneliness and depression, are graphically depicted throughout the book, culminating in a failed suicide attempt, the lowest point in this young man’s life. But when it is at its darkest point, a light seems to appear in the distance and in this case the light is named, Esther.

In November of 1982, Bill and Esther were married in a small town where Bill grew up. Surrounded by friends and family they danced at their wedding, as long as Bill was able to stand. The remainder of the dance was completed in a wheelchair, to the astounding cheers and applause of all those in attendance.

The Last Dance Is Mine is the first book written by Bill Horner, but for the benefit of all of us, I hope it will not be his last. Bill has a gutsy, down to earth method of telling a story and each chapter will bring you deeper and deeper into the life of this man with multiple sclerosis.

This book was written by a man who held a stick between his teeth and punched out each letter, of each word, and of each paragraph. If you are looking for definition of guts and class, look no further than Mr. and Mrs. Bill Horner. ● (This book is listed at Amazon.com for $18.95, or from the author at Building 110, Apt. 104, for: $15.00.)

Around the same time, friends of mine, who were also struggling to get their voices heard, started into the world of the web series – making it themselves and putting it straight on the internet. That is when I discovered an actress using a wheelchair! Her name is Teal Sherer. I first saw her in a web series called The Guild, playing an evil and funny paraplegic nerd. From there she created her own web series called My Gimpy Life. It was perfect, tackling issues of an actress with disabilities in Hollywood, with sarcastic humour. I was an instant fan.

So this past summer when Teal launched a kick starter fundraising campaign for season two of My Gimpy Life, I jumped at the opportunity to get involved. I became an executive producer, which came with a small “roll on part” in an episode! So you could say, I actually bought my first ever role.

I excitedly told everyone I knew, including my friend Leandre who works at SCI Ontario. He told me that there was going to be a play produced with an entire cast of people with disabilities. He asked if I’d be interested in getting involved.

I absolutely was, so a couple weeks later I was at an audition/interview for what is now Borne.

It has been such a great process workshopping script material with the cast. I am ever more excited to have an opportunity to share our experiences with the audience. It is going to be such a great chance to open some eyes and get people thinking about simple things, like accessibility. But more importantly, we will be inviting the audience to see past our disability. This continues to be my personal goal in life.

Nikoletta Erdelyi This is not a one dimensional story about struggle and pity; it is so much more. We want the public to feel the intensities of our ordinary

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joys and frustrations – some unnecessary and some inevitable. We want them to experience our reality during this play, as we share and confess our lives in auditoriums, that our chairs symbolically vanish and authentic humanness merges our existence, shaping before us like the rarest of art forms, free and unbound. This is about the infinite capacity of art. We want the public to fall in love and befriend strangers, and make a steamy cup of morning coffee, but we want them to do it sitting down.

express a perspective not often seen on the stage or in art in general.

Working with Judith and the cast has been an eye-opening, incredible experience thus far; raw, real, honest, humbling, hilarious, emotional, and exciting... all of which I hope to share and convey with the audience come opening night. This work is new, and is needed, and I am thrilled at what the future of Borne will bring.

Joshua Dvorkin

Just before my accident at the age of 18, I was faced with what was my first significant adult decision. I could take a year off school and work as an actor at a dinner theatre in Halifax where I had succeeded in auditions or go to school. I turned down the job and instead decided to go to university where I enrolled in the drama program at the University of Waterloo. I thought an education to fall back on was important, and this theater program could be a stepping stone to greater things. That dream changed two weeks after the start of school when I sustained a C-5 spinal cord injury during tryouts for the rugby team.

In the 32 years since my accident, I have discovered that my injury was not a dream deferred, but rather a dream redirected. For me, the world of performance has been focused on public speaking and disability rights activism. Borne provides a wonderful new dimension to that experience. Being on stage with such a truly talented and professional cast is the stuff that dreams are made of. All of my colleagues bring an honesty and accuracy to the play that reflects truth and art. They speak of loss but they always communicate reclamation. Their story is an allegory for human possibility. They challenge change for a better day; one adorned with equality. ●

I am in the play to share with and inspire others with stories that get rid of the “disabled” stereotype, so people realize that everyone with a disability is an individual with a set of life circumstances. I am also in the play to send a message to other people with disabilities that your life is yours to create. I think this play sends an important message by having people with disabilities participate in a larger cultural context where they will have the opportunity to be seen and heard as never before. I hope that the play allows others to realize the beauty in life, so they can live with a sense of gratitude and will be able to achieve their highest personal potential. Life is about human connections, should be free of guilt and shame, and include everyone.

Mayaan Ziv I am so excited to be a part of Borne! As a photographer, it has always been my goal to bring awareness about disability through my art, and it is so cool to share that goal with the brilliant and beautiful minds that have come together to collaborate on this production. This goal is something I have learned we are all passionate about, that is, to share and

David Shannon

SCI Ontario

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feature

AccessTO I n a city becoming known for its vibrant culinary scene, Toronto can only benefit from what Silvia Guido has been striving to accomplish over the last year.

The Toronto-based physiotherapist wants to see more of her clients and friends in her favourite restaurants which led her to create AccessTO: a blog based web forum that highlights fully accessible restaurants, cafes and bars in Toronto by providing measurements and pictures in an easy to read format.

Although the food is not reviewed, this team knows a little something about the city’s most renowned chefs. Silvia and her writers have spent the last year visiting all of the venues and are about to publish their 70th review, a surprising feat due to the unnerving reality of our not-so-accessible city.

Why did you start AccessTO? Although I do not have a physical disability, my job allows me to meet people every day who strive for inclusivity within the community. Based on my love of food, the idea that a few steps could keep someone from experiencing the basic act of eating with loved ones aggravated me. Whenever I ate at a new restaurant, I was automatically assessing the space due to my (not always welcome) professional training so it was an easy shift to writing it on the blog. It also became apparent very early that I wouldn’t have a problem finding people who wanted to help which ignited the project. The criteria used for the blog was refined by my brother, who is a construction project manager in Toronto, and three occupational therapy students volunteer their time to co-author the reviews.

What has been the reaction to your blog from followers?

Very positive. Many people have approached me personally to provide feedback, but my hope is for individuals to become comfortable commenting on the blog, whether it is positive or negative. I think this is the only way to enrich the reviews and make them useful. My experience will be different

Accessible Wasaga Beach

By Marilyn Stafford

E

very year in February a group of us attend SCI's Ski Day Fundraiser at Craigleith Ski Hill near Collingwood.

This year I wanted to stay overnight before and after the event. While researching accessible accommodations near Collingwood I came across The Oasis by the Bay in Wasaga Beach which advertised itself to be totally wheelchair accessible.

When I called I was told the motel was owned by E3 Community Services who purchased the property when their clients expressed a need for accessible holiday accommodations.

The name reflects the agencies mandate to Educate, Enable and Empower their clients who have various physical disabilities. They are currently renovating five one and two bedroom units to be fully accessible. The unit we stayed in had a hoyer lift in both the washroom and bedroom. The washroom with its wheel-in shower was one of the best layouts I have ever seen. Another unit is going to have a large soaker tub.

The kitchen area has a microwave, toaster, fridge, sink etc., and

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from my friend who is a new mother looking for accessible venues, so this needs to be shared.

What has been the response from the places you visit?

One thing that became clear when we started was that if a restaurant is accessible, they want people to know! The general response from owners and managers has been incredible especially because we make it clear that if a venue is not deemed appropriate it simply does not get a review on the blog. I always wanted AccessTO to be a place where removing barriers is celebrated, and writing about why the new café down the street is not accessible becomes counter- productive.

Do you have any recommendations to restaurant owners?

I do not want to ignore how difficult it is to succeed in the restaurant business, especially in Toronto. Having said this, I would still encourage business owners to consider the accessibility of their space because it can assist in generating a broader customer base. If cost is an issue, new initiatives such as the StopGap program and the Government of Canada’s Enabling Accessibility Fund are available.

What is your long-term goal for AccessTO? I want to see the blog turn into a well-established resource for people researching accessible venues and events that are current and trending in Toronto. This can hopefully include festivals, live music venues and specialty food events. Too often I find a great website or phone App that is not up-todate and so becomes irrelevant. There is always something happening in the city which I believe could bring our community closer if the accessibility of the event is promoted. We want to be that missing link.

You can visit the website at www.accessto.ca. ● Does your community have an access guide? Share it with us or consider starting your own.

the living room area has a comfortable pull-out couch.

And talk about windows... the unit we stayed in had a total of six windows.

Needless to say it was bright and airy.

I am looking forward to visiting this summer. Two of the beaches nearby have a special mat that they lay out on the sand so you can take your wheelchair right to the water’s edge. Plans are also in the works to purchase a couple of beach chairs.

On the property there is also a BBQ for everyone’s use and a large accessible fire pit area.

If you are looking for an affordable getawaythen you have to check this place out. www.oasisbythebay.ca ●

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:07 AM Page 35

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feature

Demystifying the Registered Disability Savings Plan (RDSP)

By Yves Thauvette & Michael Woolsey

I

In the last few months discussing the RDSP with groups and individuals, we have discovered there are numerous myths regarding the RDSP. We have heard too many reasons why people thought they could not qualify, including: • “I’m on ODSP, I can’t have assets” • “My disability does not qualify for this program” • “I earn too much income, that’s not for me” • “I don’t have any money to invest. This program is for people with money” Unfortunately a very small percentage of people eligible for the RDSP are actually taking advantage of this generous program. Why are free grants and bonds so hard to give away! We realize that receiving free grants from the government sounds hard to believe, but yes it is true. The government will actually provide matching grants of up to 300%!

To qualify for an RDSP, you must: • Be eligible for the Disability Tax Credit (DTC) • Be a resident of Canada • Be less than 60 years of age, 49 or younger to receive the matching grants • Have a valid SIN We know there are people out there that do have all of these requirements yet have not been introduced to the RDSP or they have been told that it is not for them.

As fathers and home owners, we know that income can be drained quickly paying the mortgage, car payments and expenses linked to a disability while meeting the needs of our individual families. Nowadays, not everybody has a pension plan and not everybody has extra money, especially when living with a disability to fund a comfortable retirement. The RDSP gives people with disabilities and their families’ ownership and pride in having a financial asset. The bond and matching grant money make it possible to save for long-term financial security. The RDSP makes it easier to accumulate funds by providing assisted savings and tax-deferred investment growth.

We quickly saw the value in owning a RDSP as well as promoting the RDSP to others that can benefit from the program. As a result, we started to host seminars to demystify the RDSP and give people an opportunity to ask questions about their own financial concerns. Living with a disability can pose many financial challenges, having someone to assist that understands from a personal stand point is a huge asset. Our business focuses on financial opportunities that empower people with disabilities to make wise and independent financial decisions for their future.

We host complementary seminars that are focused on the RDSP and other strategies that assist Ontarians with a disability and their families in planning for the future. Please contact us if you would like to book a seminar for your club, agency or affiliation and let’s demystify the RDSP! ● Yves Thauvette, Financial Representative ythauvette@primerica.com (705) 933-1401 • Michael Woosley, Regional Vice President mwoolsey@primerica.com • (905) 441-6718 • Primerica Financial Services

A

Ontario Renews Support for Rick Hansen Foundation and Ontario Neurotrauma Foundation On April 1, the Ontario government announced an investment of $15 million over the next three years for research and knowledge translation relative to brain and spinal cord injury.

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• Outspoken! • Spring 2014

nnually, $3 million will be directed to the Ontario Neurotrauma Foundation (ONF); and $2 million will be directed to the Rick Hansen Foundation (RHF) for spinal cord injury research in Ontario. These investments will help researchers move innovative new discoveries from lab to clinic sooner, while linking Ontario’s world-class researchers with others around the globe.

A portion of the funds received by the ONF will be directed to SCI Ontario to support our leadership role with the Ontario Spinal Cord Injury Solutions Alliance. This is great news for people in our province, as SCI Ontario will continue to generate new knowledge to enhance the lives of people living with SCI, and translate this knowledge into practice. SCI Ontario continues to be a partner in this work along with the Rick Hansen Foundation and the Ontario Neurotrauma Foundation.

Since 2003, Ontario has invested more than $3.8 billion in research and innovation and is home to one of North America’s leading concentrations of biomedical research and development. Investments in this area help position Ontario as one of the world’s top life science research centres, and help provide better services, improved health, and lower healthcare costs.

Building our knowledge economy is part of the government’s economic plan that is creating jobs for today and tomorrow. ●

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:07 AM Page 37

CLASSIFIEDS To purchase your ad in this section please call 416-422-5644 x212 or email bev.jenkins@sciontario.org

GUIDE TO ADVERTISERS SCI Ontario thanks its advertisers who have made the production of this issue of Outspoken! possibe.

LEGAL Gluckstein & Associates

www.gluckstein.com FOR SALE: This custom built white cedar log home is fully wheelchair accessible with ground level entrances sitting on 2+ acres in picturesque Port Sydney, in beautiful Muskoka, Ontario, on a friendly, quiet dead-end street. Within a few kilometers are Hwy 11, a grocery store, gas station, public school, fire hall, Mary Lake, and many other amenities.

The 3,780 sq. ft. home includes an attached 1,000 sq. ft. garage with three garage doors, two of which are oversized to accommodate modified vehicles, an air compressor for any maintenance, in-floor heating, and two direct entrances into the main living area. The house features include: outside doors with lever styled handles and deadbolts, inside pocket doors, all doorways are minimum 36 inches, central vac, large low set windows, oak hardwood flooring complimented with ceramic tiling in the entranceways and bathrooms for easy manoeuvrability, cedar wainscoting and white pine ceilings throughout the house, and in-floor heating from an oil fired boiler. The large open concept living room, dining room and kitchen provide ample living space with exits to the front, back, garage, a 300 sq. ft. covered deck, and an elevator to the full-sized partially completed basement.

The kitchen has low wheelchair accessible counters and sink, a built in reachable oven, dishwasher, fridge with ice/water dispenser, and a large island with a cook top, cupboards and drawers. The extra wide hallway leads to three large bedrooms, main bathroom, laundry facilities, and a large accessible roll in pantry/storage area. The master bedroom has two large closets with shelving, an outside door to the front deck, and a private ensuite. The large open concept bathroom ensuite has a roll in shower, therapy jet tub, and custom built vanity for easy access to the sink and for supplies.

Extra care and thought were put into the building of this home so it would be comfortable, roomy, maintenance free, and to ensure there were no boundaries for wheelchair accessibility. The basement can be accessed by a separate entrance for the possibility of an apartment or caregiver quarters. It has a three piece bathroom, a bedroom with lots of possibilities for more, and hookups and plumbing for a full kitchen and laundry facilities.

Asking $649,000. For more information please contact Andy Deith @ 705-644-2832 or Josi Deith @ 705-644-2470 or by email: hds4ad@gmail.com or josiellissa@hotmail.coom.

Judith Hull & Associates

www.judithhull.com McLeish Orlando LLP

www.mcleishorlando.com Oatley, Vigmond Personal Injury Lawyers LLP

www.oatleyvigmond.com Personal Injury Alliance

www.pialaw.ca Thomson Rogers, Barristers and Solicitors

www.thomsonrogers.com

MOBILITY & MEDICAL SUPPLIES Assistive Designs

www.assistivedesigns.com Coloplast Canada Corporate

www.coloplast.ca Hollister Ltd.

www.hollister.com/canada National Mobility Equipment Dealers Association

www.nmeda.com RGK Wheelchairs Inc.

www.49bespoke.com SCI Supply Inc.

www.scisupply.ca

REAL ESTATE REMAX Unique Inc., Brokerage

www.AccessibleHomeFinder.com

STRUCTURED SETTLEMENTS Henderson Structured Settlements LP

www.henderson.ca

TOURISM Tourisme Quebec

www.theaccessibleroad.com

SCI Ontario

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giving

Community Events in Support of SCI Ontario

By Sheila Daniel, Development Officer

Professor, teacher or colleague spends a day in a wheelchair

Musical Performance

There are many meaningful and significant ways to support Spinal Cord Injury Ontario in its mission to support people with spinal cord injury to help them to achieve independence, self-reliance and full community participation.

O

ne of the most impactful ways is by hosting a community event. A community event provides you with an opportunity to organize your own event in order to increase awareness and raise funds to support people with SCI and other physical disabilities.

Your time and effort will directly benefit those living with SCI and their families. It is an opportunity to truly make a difference!

These events are hosted for many reasons including: • Wanting to give back to people with a spinal cord injury in your community • Honouring a loved one • Paying tribute to a special someone who has passed on • Raising awareness of, and funds toward, a specific program Planning your own fundraising event can be as simple as a mini relay, spend a day using a wheelchair, golf or bowling night or dinner between friends, or as big as a community run, benefit concert or “a-thon”. Decide on an event that you and your group are passionate about and it’s bound to be a success!

For more information on hosting a community event in support of people living with SCI visit our website at www.sciontario.org/communityevents or email sheila.daniel@sciontario.org.

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• Outspoken! • Spring 2014

Mini Wheelchair Relay

COMING SOON Have a creative fundraising idea but no time to host an event – well Personal Online Fundraising is for you! It is fast, fun and easy! You decide on your theme, add photos, video clips and tell your story and/or reason for your FUNdraiser!

Types of Personal Pages: Special Occasions / Events You can create a personal page to collect donations in lieu of gifts (e.g., birthday, wedding), fundraise for an activity or a challenge in which you are participating, or just simply raise funds for people with SCI.

In Honour You can create a personal page to honour someone special in your life. Your friends, family or co-workers can make a gift and send an e-card with a personal message to the person being honoured.

In Memory You can create a personal page to remember a loved one. Your friends and family can make donations in memory of your loved one, or to mark the anniversary of their passing.

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:08 AM Page 39

“No N doub doubt bt about abo it. A permanent permanent spinal spinaal cord injury will depress d press dep ss you... u... but b t you have h to t work wo work through rough it and realize re that life goes goes on and stilll has a lot of wonderful wonderf ful surprises forr you.” you.” – Frank Nunnaro N

Frank Nunnaro is a regular guy with a real talent for barbecue cooking. He was a produce manager at an Orillia IGA when he had a terrible car accident that damaged his spinal cord and left him a paraplegic.

After intensive rehabilitation at Lyndhurst Hospital, and with the loving help from his wife Vickyy, Frank has ha gone on to become one of the great BBQ hosts of the century. Every year in the middle of the summerr, Frank and Vicky host an amazing barbeque party at their Wasaga Beach home. Frank likes to think of it as a real celebration of life. We like to think of it as a testimony to the human spirit.

We are honoured to have represented Frank Nunnaro in his lawsuit and to count Frank as a friend and one of the many everyday heroes we have been able to help.

YOUR R ADV ADVANTAGE, VA ANT TA AGE, in and out of the courtroom

416-868-3100 | 1-888-223-0448 www.thomsonrogers.com www .thomsonrogers.com

! Outspoken SPRING 2014_! Outspoken Winter 2009 2014-04-14 10:08 AM Page 40

We see the lives behind our laws.

With over 40 years of litigation experience, Oatley Vigmond knows personal injury law. We’ve argued hundreds of cases, secured countless record settlements and have helped shape Canadian law.

Yet for all our success in the courtroom, we have never lost sight of the fact that people come ďŹ rst. We are dedicated to serving clients across Ontario. Contact us at 1.888.622.2481 or oatleyvigmond.com.

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