Outspoken! spring 2017 by g bruce Chapman

Outspoken! sciontario.org

Spring 2017

CELEBRATING Our Community! Wheelchairs WITHOUT BORDERS Give PEAS a Chance WORKING TOGETHER to Change the Healthcare System GAINING INDEPENDENCE and Opening Doors through SMART TECHNOLOGIES

ABILITIES EXPO TORONTO 2017 SPINAL CORD INJURY ONTARIO CHAMPIONS EXCELLENCE IN SERVICE, ADVOCACY AND QUALITY OF LIFE FOR PEOPLE WITH SPINAL CORD INJURIES

Ignore the distractions. Focus on the drive. Get home safe.

#likelife

ibc.ca |

Our Vision: Spinal Cord Injury 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 Andrea Andrecyk, Chris Bourne, Sheila Daniel, Mary Dufton, Jason Garden, Stuart Howe, Jeffrey Kerr, Wayne MacDonald, Sarah McKinnon, Wendy Murphy, Dr. Chris Oswald, Frank Pozen, Julie Sawchuck, Joanne Smith, Nancy Xia

30 – cover story Julie Sawchuck visited the Abilities Expo Toronto 2017, and reviews new ways of getting around, and not just on flat land!

FEATURES

14 19 22

Ontario Court of Appeal Rules Structured Settlements Are Not Property Wheelchairs without Borders You’re Not Dead

34 37 38

Paralympic Trailblazers Named to Canadian Paralympic Hall of Fame Class of 2017 Helpful Tips for Caregivers

DEPARTMENTS

Subscription to Outspoken! is a benefit of Spinal Cord Injury Ontario membership. To join, please visit www.sciontario.org/service/membership or email membership@sciontario.org. For editorial enquiries, to submit a story, or for information on 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 Spinal Cord Injury Ontario. Products and services advertised or described in Outspoken! are not tested or endorsed by Spinal Cord Injury Ontario. For more information, visit us online:

sciontario.org

my view

going places

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• 16 Cuba: A Country Set Back in Time

Your Support in Action

wellness

what’s on

•6 •8

• 24 Celebrating Our Community! • 24 2017 Shades of Ability Art Exhibition and Sale, Call for Submissions • 25 A Fantastic Day on the Slopes • 25 Estates & Wills Information Session and Afternoon Tea • 26 London Roll & Bowl • 26 Kitchener Roll & Bowl • 28 Sweeping for Spinal Cord Injury Ontario • 28 Second Annual ReelAbilities Film Festival Toronto

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Give Peas a Chance Intrathecal Baclofen (ITB) Therapy for Severe Spasticity – A Program and Patient Success Story Baclofen Pump: Part Two

peer support • 10 Peer Support & Peer Connections • 11 Peer Support Activities

spinal cord injury – we’ve got your back • 12 Spinal Cord Injury Ontario Awarded Three-Year CARF Accreditation • 12 Great News to Share with Our Community • 13 Working Together to Change the Healthcare System

My New Power Chair Has Arrived

home life • 36 Exciting Developments on the Horizon for Barrier Free Real Estate 38

Guide to Advertisers

the heart of innovation • 30 Abilities Expo Toronto 2017 • 32 Gaining Independence and Opening Doors through Smart Technologies

32 Spinal Cord Injury Ontario

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my view

Your Support in Action A new fiscal year is upon us. Togther, we continue to make Ontario a better place for people with spinal cord injuries.Your support is incredibly valuable and I’m delighted to provide you with an update on how your donations were used this past year.

ur Enhancing Independence Program, provides financial support to purchase equipment and supplies to improve the quality of life of our clients. When they apply to us for support, they have exhausted all other options. As an example, during the 2016 Giving Tuesday online campaign, we were able to help clients by purchasing much needed adjustable hospital beds, an automatic door opener, and low air loss mattresses which help manage chronic pain and reduce skin irritation. Your donations have also supported advocacy services. Our Fighting for Better Healthcare primary care event brought together advocates, experts, healthcare professionals and members of our community to discuss access to healthcare services for people with SCI. Spinal Cord Injury Ontario has been instrumental in supporting people in this field and in terms of next steps, we will: • Work with government and community partners to improve access to family doctors and community care; • Provide information and tools to family doctors to better serve people with spinal cord injuries; • Make sure that the voices of people with spinal cord injuries are included in discussions on how to improve healthcare.

And one of the biggest assets of the Peer Support Program, which donor gifts support, are the staff who work behind the scenes to make things run smoothly. Thanks to you, Peer Support Programs are run across the province in Ottawa, Thunder Bay, London, Barrie, Toronto and Kingston. These are just a few ways in which your support has been beneficial in helping people with SCI. If you would like to make a donation, have questions, feedback, or would like to learn how you can get involved, you can contact me direct, or contact Lynn Mineque, Manager Special Events, (T) 416-422-5644 Ext. 221, (E) lynn.mineque@sciontario.org. You can also visit our website: www.sciontario.org, or follow us on twitter.com/SCI_Ontario or facebook.com/sciontario.org. I want to tell you how grateful we are at Spinal Cord Injury Ontario, that there are donors like you who believe in the work we do. With sincere gratitude,

Stuart Howe

• Outspoken! • Spring 2017

There is hope for a better tomorrow. Thomson, Rogers is dedicated to getting accident victims the compensation and support they deserve. YOUR ADVANTAGE, in and out of the courtroom.

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wellness By Joanne Smith

Give Peas a Chance

A highly nutritious food we rarely hear about anymore is the green pea, but this wasn’t always the case.

nce upon a time, about 10,000 years ago, green peas (often mistaken as a vegetable; they are in fact a legume) helped develop agricultural societies as they were one of the first cultivated crops. 5,000 years later, our Egyptian ancestors worshipped this valuable food source so much they buried them with Pharos to take with them into the afterlife. Rome’s first cookbook celebrates these green gems with nine elaborate recipes. The English children’s rhyme Peas porridge hot, peas porridge cold, peas porridge in the pot nine days old, is a tribute to the pea as they helped sustain the masses during the 16th century famine. And of course for almost 200 years a single pea has been the focus of one of the most famous children stories of all time: Hans Christian Andersen’s fairy tale The Princess and the Pea. With such a rich history and so much nutritional value it surprises me that we don’t hear more about the powerful pea. But the main reason I’m focusing on the pea is that it has a lot of essential nutrients and health benefits for people with SCI: • healthy source of protein to help maintain skin integrity; • complex carbohydrates help sustain blood sugar levels for energy; • low in fats and cholesterol to help maintain healthy lipid levels; • low in calories to help maintain an idea weight; • high in fibre to help support bowel function/routines; • compared to other legumes they have a high vitamin C content to help boost the immune system;

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• Outspoken! • Spring 2017

• contain calcium and magnesium to help support bone health; • unlike other legumes, they are less likely to cause gas; • environmentally friendly, as they have special nodules on their roots which enable them to take nitrogen from the air and fix it in the soil. Thus, peas actually enrich the soil they grow in; and • compared to other nutrient dense foods they are inexpensive. The culinary potential of the pea is endless. They can liven up any of your favourite stew, soup, casserole, salad or curry dishes. And their versatility goes beyond consumption – you can put a bag of frozen peas on sore or injured limbs to help reduce inflammation. So please, give peas a chance.

SPRING PEA DIP 1-1 ½ lbs. fresh pea pods (or 2 cups frozen peas) 1/3 cup ricotta cheese 1/4 cup fresh mint 2 tbsp. Parmesan cheese Salt & pepper to taste 1. Shell fresh pea pods (or use frozen). Boil 3 – 4 minutes. Tips to easily shell peas – press your thumb against the fullest part of the outside seam at the bottom of the pod, then split open the pod. Slide peas out of the pod. Or tear the stem end and pull the string down along the pod (it acts like a pull tab). The pod opens easily and you free the peas with a run of the thumb. For optimal results, tear the stem backwards and pull it down along the indented side. This will remove the sturdiest bit of string and unzip the pod. 2. Strain peas and place in blender with mint. Blend until mushy. 3. Transfer into bowl, add salt and pepper. Fold in two cheeses. 4. Garnish with a few raw peas. ●

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Intrathecal Baclofen (ITB) Therapy for Severe Spasticity A Program and Patient Success Story By Filomena Mazzella, RN

Intrathecal baclofen (ITB) therapy is a treatment option for spasticity that has existed for more than 25 years, but until February 2012, when the University Health Network (UHN) opened its program doors, it was not available to patients in the Greater Toronto Area.

ince then the program has served adults with spinal cord injuries or other neurological conditions such as multiple sclerosis and cerebral palsy who have not been able to find relief of their spasticity from other treatment options. This therapy uses a surgically implanted programmable pump and catheter to deliver medication directly to the fluid surrounding the spinal cord, which helps relieve severe spasticity. Over the past four years, the development of the UHN-ITB program has been a continuing journey for both the clinical team and our patients. Getting ITB therapy is a process and while the basic steps from initial physiatry consult through to surgery remain the same, we continue to evolve as we learn and work towards streamlining the process as best we can.

A number of people have accompanied us on this journey since we opened our doors. One such patient is Wendy Murphy. Wendy shared her story with Outspoken! magazine in the spring of 2013. She outlined her struggle with her spasticity, the many oral medications and Botox injections she was taking in attempt to manage it, and the significant impact these had on her life. Despite these treatments, Wendy’s spasms would (among other issues) still throw her out of her wheelchair at times. As such, her physiatrist had been waiting to refer her to the ITB program even before it opened its doors. Wendy’s journey with ITB therapy has been just that – a journey, and not always the simplest one. As our very first patient to undergo a “test trial” (a one-time injection of ITB to see how a patient will respond), we learned that our test trial dose needed to be more aggressive for people with spinal cord injuries. Wendy is one of the rare individuals who required a repeat trial to confirm that her spasticity responded to ITB. Then, just as Wendy was nearing the final step in the ITB process and was scheduled to see the surgeon, she developed a

pressure sore due to illness. This unfortunately delayed the pump implant as any wounds have to be healed before we can proceed with surgery. Fast forward several years post pump implant to Wendy today. In addition to better overall control of her spasticity symptoms, we have been able to eliminate all of Wendy’s oral medications and she tells me that her family reports, “We have our Wendy back.” The team was always amazed at how well Wendy functioned in spite of her high doses of oral spasticity medications, and to see the energetic individual who emerged after eliminating them has been inspiring. Wendy is now busy travelling and doing advocacy work for people with SCI. We continue to follow her for ongoing management and refills of her ITB pump. And how does Wendy feel about the outcome? Read on to find out… For more information about the UHN Toronto Rehab Intrathecal Baclofen Program, please email: itb@uhn.ca or call (416) 597-3422 Ext 5764. ●

Baclofen Pump: Part Two By Wendy Murphy

It is a year and a half later and I have never looked back!

n my last story in Outspoken! magazine, I wrote about the details

on the trial process for the Intrathecal Baclofen Pump implant. I

have had the pump implanted and the results have been astounding. The surgery itself was approximately three and a half hours in length, with only one night spent in hospital. The pain was minimal and the only real form of nursing necessary was looking after the staples that were on the implants incision. I was on a cocktail of medication for the muscle spasms that I suffered at the time of my surgery. After having the pump implanted I was on a regular regime of routine visits to the Lyndhurst Centre, and visits to Dr. Burns my physician in charge, in order to

• Outspoken! • Spring 2017

slowly wean me off the many medications I was on. The visits were weekly, and the dosage reduction was gradual. As the oral medications were decreased, the baclofen injected into the pump was increased, with no side effects other than my being much more consciously aware of my surroundings as a result of taking less medication. Although the decrease in the medication was gradual, my ability to better function became more apparent relatively early on. I felt less lethargic, more alert, and much better able to cope with my day-to-day Wendy Murphy responsibilities. ●

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peer support

Peer Support & Peer Connections “It’s invaluable; you just can’t buy this kind of resource.” Do you sometimes feel like no one around you really gets what it’s like to have a spinal cord injury? We hear you. It’s important to have someone you can talk to who truly understands and “gets it.” That’s why we have a program called Peer Support.

pinal Cord Injury Ontario’s Peer Support Program connects

people living with spinal cord injuries with fully-trained

volunteers who can share their experience and knowledge. We can

connect family members, too! We complement professional services provided in acute hospitals, rehabilitation centres and community based health and social service agencies. Trained Peer Support volunteers are people with personal experience with an SCI and family members of people with injuries. Our volunteers have “been there; done that,” and are willing to help those who are newly

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• Outspoken! • Spring 2017

injured, and their families, as they adjust to life with an SCI. For a person with a new SCI, thinking about the challenges of the future can be daunting. But, nobody should have to contemplate these life changes in isolation. By listening, sharing their own experiences and providing practical information, volunteers provide one-to-one support. Peer Support is currently offered in: London, Ottawa, Hamilton, Barrie, Thunder Bay, Kingston and Toronto.

Peer Connections Peer Connections are monthly group education sessions on various topics of interest to people with a spinal cord injury. Past Peer Connections topics have included: • Travel • Bowel & Bladder • Family Caregivers • Disability Tax Credit & RDSP • Adaptive Recreation • Adapted and Modified Vehicle Display • Knowing Your Rights These events are also an opportunity to connect with other people in your community. Everyone is welcome to attend including family members, people with other types of physical disabilities, healthcare professionals and students. For a full list of the upcoming Peer Connection events, visit: http://www.sciontario.org/peersupportevents. ●

PEER SUPPORT ACTIVITIES KINGSTON EVENTS

TORONTO EVENTS

Ladies' Night/Guys’ Night

Travel

Monday, May 15th

Thursday, May 25th

Drop in to share ideas, discuss issues and spend time with your peers! For more information: Ivan Rendulic, (T) 416-422-5644 Ext. 263, ivan.rendulic@sciontario.org.

ALL EVENTS: Time: 6:30-8:00 p.m. Location: Lyndhurst Centre, 520 Sutherland Dr, Toronto

Adaptive Recreation Monday, July 17th

Direct Funding – ILC Monday August 21st

Chronic Pain Monday, June 19th

ALL EVENTS: Time: 5:00-6:30 p.m. Location: Providence Care Hospital, 752 King St. W. Kingston

For more information: Andrea Andrecyk (T) 613-547-1391,

andrea.andrecyk@sciontario.org.

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we've got your back

Spinal Cord Injury Ontario Awarded Three-Year CARF Accreditation CARF International announced that Spinal Cord Injury Ontario has been accredited for a period of three years for its Governance and Attendant Services programs. This is the first accreditation that the international accrediting body, CARF, has awarded to Spinal Cord Injury Ontario.

“I

am thrilled that we have received this recognition,” says Stuart Howe, Chief Executive Officer of Spinal Cord Injury Ontario. “A lot of work and rigor went into achieving this goal. Our organization is proud to be able to say we have received this level of accreditation which represents the highest of accreditation that can be awarded to an organization.” CARF International's decision shows the organization’s substantial conformance to the CARF standards. An organization receiving a Three-Year Accreditation has put itself through a rigorous peer review process. It has demonstrated to a team of surveyors during an on-site visit its commitment to offering programs and services that are measurable, accountable, and of the highest quality. Spinal Cord Injury Ontario is a charitable organization with 16 regional offices across Ontario and the provincial office is located at

520 Sutherland Drive, Toronto, Ontario. M4G 3V9. It has been providing Attendant Services in the Toronto area since 1983 and the organization was founded in 1945. CARF is an independent, nonprofit accrediting body whose mission is to promote the quality, value, and optimal outcomes of services through a consultative accreditation process and continuous improvement services that center on enhancing the lives of the persons served. Founded in 1966 as the Commission on Accreditation of Rehabilitation Facilities, and now known as CARF International, the accrediting body establishes consumerfocused standards to help organizations measure and improve the quality of their programs and services. For more information about the accreditation process, please visit the CARF website at www.carf.org. ●

Great News to Share with Our Community We are very pleased to announce that we are now accredited by Imagine Canada for excellence in non-profit accountability, transparency and governance! Imagine Canada’s mission is to strengthen and support Canadian charities and non-profits so they may better serve and engage individuals and communities here and around the world.

o date, of the 80,000 charities in Canada (with the number totaling 170,000 with nonprofit entities), only 209 of those organizations are officially accredited. We have displayed governance and compliance in five key areas: Board and Governance, Finance Accountability and Transparency, Fundraising, Staff Management and Volunteer Involvement. The process of being accredited has been a worthwhile endeavor to strengthen stakeholder confidence in our organization. As well, accredita-

• Outspoken! • Spring 2017

tion ensures that our staff, volunteers and donors can rely on best practices to follow while making a positive difference in the community. Spinal Cord Injury Ontario provides exceptional quality-assured programs including peer support, regional services, membership, advocacy, knowledge enterprise, public policy, employment services and attendant services.

Thank you to everyone for supporting our vision to champion excellence in service, advocacy and quality of life for people living with spinal cord injuries. This accreditation strengthens our purpose and mission as an organization to assist people with spinal cord injuries and other physical disabilities to achieve independence, self-reliance and full community participation. ●

Working Together to Change the Healthcare System for people with Spinal Cord Injuries

In Ontario, if a person has a heart condition, there are defined processes and supports in place to ensure optimal healthcare. Similarly, for those who are diagnosed with cancer, each individual is guided by a healthcare team and goes through a process that defines the best treatment.

o, what happens if you have a spinal cord injury? There is a clear roadmap for the first four months and then... well; it gets a little foggy after that. This needs to change, and together we can make it happen. At Spinal Cord Injury Ontario, we have been working with our community and the government to ensure that people with spinal cord injuries don't fall through the cracks of the healthcare system. Everyone should have access to doctors and other healthcare professionals. Everyone should receive the best healthcare available. The government has put in place a relatively new healthcare act — the Patients First Act. Through various engagement strategies (a primary care summit, a survey, and a panel discussion) we have listened to our community and have taken the following suggestions to the decision makers. Together, we want to ensure each and every Ontarian with a spinal cord injury has: • Access to a primary care doctor who in turn has access to a doctor who understands spinal cord injury and can provide reliable support and the tools needed to provide proper healthcare.

• Access to a physiatrist linked with one of the five dedicated SCI Rehab Centres in Ontario. • Access to a multi-professional team, which may include an attendant, a nurse, an occupational therapist, a physiotherapist, a respiratory therapist, and/or a wheelchair vendor to name a few. • A connection to Spinal Cord Injury Ontario. We offer the community support and services. We are a one-stop shop. When you need us we are here. Spinal Cord Injury Ontario continues to work with the government to move this plan forward. We will see this through. Change is often a lengthy journey down a long road. For now, we will push forward. We can get this done, but we need to work together. We need your help to make this happen. To support accessible healthcare for all, please join our campaign by visiting http://www.sciontario.org/node/11384 to stay up to date on our campaign activities and learn more about how you can take action and make a difference. ●

Spinal Cord Injury Ontario

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feature

However, on March 27, 2017, the Court of Appeal ruled unanimously that this decision was incorrect; Donna’s structured settlement payments were deemed to be more closely aligned to disability benefits which are considered income under the law.

Ontario Court of Appeal Rules Structured Settlements are not Property While many couples believe when they enter into marriage, either formally, or via a common-law relationship, they will stay together for as long as they both live, unfortunately this does not always turn out to be the case. Many marriages end as a result of issues dealing with finances, particularly those where one of the parties suffers a personal injury accident and subsequently settles their claim.

What Does This Decision Mean For Personal Injury Claimants? Donna Hunks’ co-counsel (with Trent Zimmerman), Christos Vitsentzatos called the decision a “victory for anyone who has a structured settlement, or who is contemplating a structured settlement through a personal injury action.”[1] Moreover, there is speculation that the clarity and reasoning behind this decision may encourage personal injury lawyers to recommend structured settlement plans to their clients, over lump sum payments. If a lump sum award for such damages is used towards a matrimonial home or as part of a shared investment, it would then be considered shared property and divided equally upon the dissolution of the marriage. There are ways to protect yourself if you opt for a lump sum payment and plan to use the money in these purposes, but they entail some delicate conversations with your current or future spouse and a lawyer to draw up a marriage contract. In the Hunks ruling, the judge found structured settlements to be payments that would, in whole or in part, replace the income that Donna Hunks would have otherwise been earning had she not sustained her personal injury accident. As such, they are a replacement for a lost future income stream than a pension that had been accrued. That future is not certain.

The Case for Structured Settlements

significant recent Ontario Court of Appeal court ruling should give couples pause as they think about what happens if a longterm relationship ends. The recent decision has a significant impact on personal injury awards, and injured claimants in personal injury actions may now have more reason than ever to choose to place some or all of their settlements into a structured settlement.

A personal injury award is not like a lottery win. However, if a personal injury does occur and money in damages is awarded, like real lottery winnings, lump sum payments are often at great risk of being lost prematurely due to poor investments or poor planning. Moreover, although lump sum awards are tax-free, the income derived from them is taxable. Structured settlements, on the other hand, offer a guaranteed, tax-free annuity. This form of award disbursement is one of the most secure investments available, and yet it still generally – sometimes significantly – outpaces other types of guaranteed investment.

The Case and The Decision

A More Secure Future

Only months after Donna Hunks married her husband Gary she had an accident, sustained a disability and was not able to return to her previous employment. She settled her lawsuit and used a significant portion (about $200,000) for her family’s needs; and much of the remainder ($302,100) was used to purchase a structured settlement. This structured settlement provided her $1,287.15 per month (plus a two per cent annual increase) for life and four lump sum payments of $15,000.00 every five years between 2009 and 2024. When she separated in 2011, after 15 years of marriage, Ontario’s Family Law Act stipulated that, with few exceptions, “property” acquired during the marriage would be split evenly between the parties. In 2015, an Ontario Superior Court decision had concluded that her structured settlement payments were similar to a pension, and therefore part of the matrimonial property that would be split evenly.

The Ontario Court of Appeal ruling in the Hunks’ case reaffirms that structured settlements offer people a safe, secure, and dependable way to manage and invest the damages awards they receive – no matter what the future holds. In some instances, that future will hold a partner to share it with. But while that partnership may have ended for Donna Hunks, her lifelong structured settlement payment plan will not. For more information on the types of structured settlement plans available for an injured claimant, please contact Henderson Structured Settlements Managing Partner and Consultant, Barry Chobotar, H.B. Comm., J.D., CSSC, by phone at 1 (800) 263-8537, email at chobotar@henderson.ca or by visiting www.henderson.ca. ●

• Outspoken! • Spring 2017

[1] Cristin Schmitz, “Ontario Court of Appeal rules structured settlements are 'income' not 'property',” The Lawyer’s Daily, March 27, 2017. URL: https://www.thelawyersdaily.ca/articles/2792/ontario-courtof-appeal-rules-structured-settlements-are-income-not-property-?category=news

going places

CUBA

A Country Set Back in Time By Wayne MacDonald

I decided to visit Cuba, February 1st, which is a little after Christopher Columbus discovered it on October 28th, 1492. I also thought I would visit before America got its hands in there and created commercial chaos.

• Outspoken! • Spring 2017

stayed at the Blau Costa Verde resort, about an hour from Holguin. My friend Rose, who I met at a two-on-two bonspiel in Ilderton Ontario, joined me on my getaway. We arrived at Holguin airport and once on the tarmac I would learn that I would remain in the aisle chair until I cleared customs. This was quite different to all the other destinations in which my wheelchair would always be awaiting me at the bottom of the stairs. We cleared customs and Rose went searching for my wheelchair, and we were soon reunited. At this point I should explain that I was

going to be charged extra for the “special transportation” by a third party provider through the travel agency. It was going to be an extra $200 round trip! I had disputed the extra charge prior to my departure and it was removed. Once outside we were greeted by a large bus that had no special abilities to assist me. The Air Transat rep was quick to figure out the problem, and I was assisted onto a smaller van and we were on our way to the resort. It was interesting travelling the roads of a country that has had the resilience to survive 50 years of heavy U.S. sanctions, although it was

Every May, there is a massive party for Las Romerias de Mayo, May 2-8, which lasts for days atop this magnificent point overlooking all of Holguin. I enjoyed my first cigar while taking in the views of the city.

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Spinal Cord Injury Ontario

• 17

The vintage cars left by the Americans prior to the revolution from July 26th, 1953, to January 1st, 1959, were everywhere.

easy to see its effects. The vintage cars left by the Americans prior to the revolution from July 26th, 1953, to January 1st, 1959, were everywhere. Our driver dodged many horse drawn carts and cyclists along the way. Rose was nervous but I had been on many road warrior excursions like this. Once we arrived and checked into our respective rooms, I was pleasantly surprised with the size of the bathroom in my room. Among its amenities was a sink that you could raise and lower to your preferred height and it had a solid seat to shower on complete with a huge floor space. We checked out some of the resort and had dinner. The quality and selection was impressive along with the accessibility. The next morning I would find out about the dive operator. After a great breakfast I went in search of the dive shop. Usually I have my dives set up in advance but the lack of internet and contacts meant I was in the dark. It turned out to be a bust due to the configuration of the dive boat and how to access it. I would have to modify my usual routine and I was a little disappointed. I would spend my week in the pool along with swims in the ocean snorkeling. Rose was not comfortable snorkeling but as luck would have it I met a girl Leslie who was a fanatic, so I would hang out with her. I always thought snorkeling was like looking down on the city from the top of a hill, while scuba was like driving through the streets seeing all the hustle and bustle happening on each street. I was spoiled but enjoyed my time in the ocean just the same. One day Rose and I decided to take a trip into Holguin to visit a cigar factory, Hill of the Cross, and learn more about the history of the city. Our rep Raul set us up with Philippe and Ernesto for our excursion. They arrived in a 1955 Pink Chevy Bellaire. Ernesto would be our driver. We would experience the same dodge ball routine driving to Holguin as we did on our drive to the resort. Philippe was a wealth of information along with being a great guy, as was Ernesto. We arrived at the cigar factory and were taken through the whole process. It was like stepping back in time seeing the large bales of tobacco leaves being separated into usable and unusable piles. The unusable would be used for cigarettes. The usable would be hand rolled and quality control would discard those that were not perfect. We watched the meticulous detail

• Outspoken! • Spring 2017

that was required to create the final product. We could not take photos and we could not see the advanced rollers of that time honoured tradition. I bought some cigars afterwards and we made our way through the narrow, bustling streets of Holguin on our way to the Hill of the Cross, known as The Loma de la Cruz. All the time Philippe talked of the lineage and history of this ancient city in which Christopher Columbus first landed in 1492. We climbed the road to the top of the hill that is 261 metres above sea level. It can also be accessed by 458 steps. The first cross was carried on the back of Friar Francisco Antonio de Alegría in 1790. A second cross would replace the first in 1950. A third replacement stands there today, using the same wood. Every May, there is a massive party for Las Romerias de Mayo, which lasts for days atop this magnificent point overlooking all of Holguin. I enjoyed my first cigar while taking in the views of the city. We would continue our tour through the city visiting small parks where Cubans would congregate where they could get a signal for their cell phones. We saw a steel mural that depicted the Cuban history from the landing of Columbus to slavery, American occupation and Revolution to today. Philippe talked with pride of his city and country. After a fantastic lunch in a beautiful 1500’s building we made our way back. We finished off our visit enjoying the warm days and cool, humidity free nights. I picked up some amazing wood carvings to bring home by talented artists and we enjoyed the nightly performances at the resort. The people and culture are infectious with warm smiles and warm hearts. I never realized just how little they have, yet have the most amazing spirits. I decided to leave most of my clothes with one of our servers. I spoke with Raul so that I could keep my wheelchair through customs the day of our departure. When we arrived the ground crew spoke with customs and I was able to keep my wheelchair until it was time to board. Visiting Cuba makes you realize just how spoiled our western culture is and how the simple life is missed. ●

feature

Above/below: People that were helped by Purinapaq

Wheelchairs without Borders By Nancy Xia, Community Resource and Education Assistant

Purinapaq (Walking Together) is a non-profit organization that delivers mobility devices for people in Peru and other parts of the world where very little support and resources are available for people with disabilities.

ince its establishment in 2007, they have successfully helped more than 8,000 people by sending 3,000 motorized wheelchairs and 5,000 power manual wheelchairs to people who need them. At the core of this small organization is Jose Orozco. Everything can be traced back to 1996, when he struggled with a bad hip and pain from a spinal cord compression, which was the result of a work-place accident. In 2007, he received a knee transplant and finally saw the end of his physical ordeal. During his recovery he was visited by his friend Bob who gave him a manual wheelchair to use. When he asked about the wheelchair Bob told

him that he was running a charitable organization that sends medical supplies and assistive devices to Cuba. Most Cubans with disabilities have no access to mobility devices and sometimes they have no choice but to lay in bed most of the time. Jose thought about his fellow countrymen in Peru and how they were in the same difficult situation. Perhaps he could do something to help? It dawned on him that prior to his injury he would never have thought about doing this, but years

of physical hardship had softened him and changed his values and beliefs. With the help of people in Peru, Jose was able to involve local charitable organizations to fund the project. With the advice of his friend, he began to collect used, unwanted and broken wheelchairs from equipment vendors, hospitals, the Canadian Legion and other charitable organizations in Canada. He learned the skills needed to fix wheelchairs on his own and bought any parts that were missing or

Spinal Cord Injury Ontario

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Jose at the shop.

Nancy lives in a remote village located on the top of a very steep mountain.

Below: A friend of Nancy Mayon who became an amazing artist.

With the help of people in Peru, Jose was able to involve local charitable organizations to fund the project. With the advice of his friend, he began to collect used, unwanted and broken wheelchairs from equipment vendors, hospitals, the Canadian Legion and other charitable organizations in Canada.

â&#x20AC;˘ Outspoken! â&#x20AC;˘ Spring 2017

Above/Left: Nancy Mayon and her neighborhood.

broken. He found ways to connect with Peruvians and friends in Toronto who would ultimately help him transport the chairs on their trips to Peru. He also trained local volunteers on how to fix and adjust these wheelchairs before they were delivered. The project quickly grew and between January and August 2007, more than 300 wheelchairs were transported to Peru. When an earthquake hit the country on August 15th, 2007, Purinapaq gave much needed relief to the unfortunate individuals who were injured in the earthquake. One of his most memorable encounters was with a lady named Nancy Mayon who had been born with a physical disability. She had spent most of her life lying in bed, but after hearing about Purinapaq, she contacted Jose and asked for a wheelchair. After studying a map Jose realized that Nancy lived in a remote village located on the top of a very steep mountain. She would need a wheelchair with a strong motor. Jose had never donated a chair like that and he could not promise Nancy anything. But before long Jose received an Invacare power chair from a family whose elderly parent had just passed away. The donated wheelchair was almost brand new and had a strong motor. It was exactly what Nancy was wishing for. Jose brought the chair to her home and made the necessary adjustments to the joy stick, hand rest and foot rest and Nancy finally had wheelchair for the first time in her life. Nancy zoomed out of the door for a test drive and did not come back for three hours! Her family commented, “My sister used to be stuck at home all day every day, living with depression and hopelessness. But now, it looks like we are going to lose her.” When Jose next saw Nancy three years later, her wheelchair was already a wreck. In her rough and rocky environment it didn’t last as long as it was supposed to. Jose went back to Peru and gave her another donated chair. Today Nancy is 35. She works as a pastry baker who also sells toys in the market during Christmas season. More than continued on page 22

Top: Youtube video of Carlos Yoong. Above: Carlos Yoong’s very happy family. Right: Carlos with his donated power chair.

When Carlos sat in his new chair, his entire family was overwhelmed with emotions.

Electric Leg Bag Emptier

Enjoy dependable service and low maintenance • This is our pinch style emptier Canadian • Permits greater independence and fluid intake Products Since 1988 • The urine is held within the tubing (included) • Two-switch or single switch controlled • Powered by wheelchair batteries or optional battery pack • Can be customized to work with most environmental controllers

For More Information Contact: Dr. W. Charlton

ASSISTIVE DESIGNS P.O. Box 20015, 55 Hwy 118 West, Bracebridge, ON P1L 1T2

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

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feature

BOOK REVIEW

You’re Not Dead BY JASON GARDEN You’re Not Dead chronicles its Hero’s travels during his ten-month hospitalization, beginning with his viral meningoencephalitis, and ending with his struggle to regain his life and independence.

cerbic and illuminating, You’re Not Dead pulls the reader into the Hero’s lived experience, while peeling away the layers of politeness we often use when discussing disability. The Hero is brutally honest as he writes of his journey through the medical system. He speaks of overwhelming pessimism, of pronouncements from “on high” made with little knowledge of his condition or progress, and of being spoken at, rather than being spoken to. You’re Not Dead is both devastating and inspiring, highlighting the importance of perseverance in the face of profound adversity. The best place to purchase Jason’s book is through his publisher, Friessen Press (http://www.friesenpress.com/bookstore/title/119734000032851890).

About the Author For more than ten years, Jason Garden was a musician in the Canadian independent music scene. He was the drummer for All Cut Up (2004 – 2009) and The Twin (2009 – 2012), has performed on ten albums (including The Twin’s Inner Demons), and toured Ontario. In 2013, he contracted viral meningoencephalitis. He refuses to give up, though several doctors have told him that he should. ●

Wheelchairs without Borders continued from page 21 that, she is a prominent advocate in her community demanding accessibility and equality for people with disabilities. Through her, Jose has helped more than ten people, who with their new found mobility and confidence, have finally discovered joy and purpose in life. Another extra special case happened just

• Outspoken! • Spring 2017

last December when Jose received a donated power chair without footrests. The design of the chair was so unusual that it would be hard to find a person who would fit in it comfortably. One afternoon while browsing through YouTube he came across a video of a man named Carlos Yoong singing and playing a guitar in his wheelchair. Jose was impressed by his skills and his style of music, but he couldn’t take his eyes off Carlos’s rusty and fragile looking manual wheelchair. Evidently Carlos was born without legs and would be a perfect fit for this donated power chair. So Jose found the contact information of the video uploader and connected with Carlos. Jose took the wheelchair with him during the Christmas holiday, and flew to Ecuador where Carlos lives. When Carlos sat in his new chair, his entire family was over-

whelmed with emotions. Jose learned that Carlos was a music teacher at a local college. It was a daily challenge to go to work and push his old chair around. With his new chair he can now travel effortlessly and he plans to drive his wheelchair to work and save some money on transportation. It was the best Christmas present ever. In 2013, Purinapaq began to help people with visual and hearing disabilities with the assistance of the Catholic Church. They are collecting hearing aids, eye glasses, Braille machines or any adaptive devices that can be recycled. The organization is also looking for more volunteers, donations to expand their storage space and support for transportation. To contact Purinapaq you can call 416-938-9311 or visit their website at www.purinapaq.org. ●

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.

â&#x201E;˘

TORONTO I BARRIE I HAMILTON I KITCHENER

1-866-685-3311 I www.mcleishorlando.com

LAWYER M A

INE AZ G

A Noticeable Difference

CANA D I

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

what’s on!

C E L E B R AT I N G

O U R

C O M M U N I T Y !

Join us on June 22nd, as we come together to celebrate our community’s achievements from the past year. We’re gearing up for a fun day that will include our Annual General Meeting, Shades of Ability Art Exhibition & Sale, and Vehicle Modification Fair. By Sarah McKinnon, Senior Development Officer

DATE Thursday, June 22nd, 2017 3:00 p.m. to 8:00 p.m. LOCATION

SHADES OF ABILITY ART EXHIBITION AND SALE

Toronto Botanical Gardens 777 Lawrence Avenue East, Toronto

SCHEDULE OF EVENTS 2:00 p.m.

Registration for Annual General Meeting

3:00 p.m. to 4:30 p.m.

Annual General Meeting & Awards Presentation

4:30 p.m. to 8:00 p.m.

Shades of Ability Art Exhibition and Sale Vehicle Modification Fair

Refreshments will be provided, including a special visit from last year’s very popular ice cream truck!

Our quality of life is enhanced through creativity, and the mission of Shades of Ability is to provide a much-needed entrepreneurial platform for independent artists with disabilities to showcase their work. Join us to meet talented artists from across Ontario, view and purchase their work, vote on the best in show in each category, and enjoy great food and beverages. 4:30 p.m.

Doors open; Hors d’oeuvres and cash bar

6:30 p.m.

Voting for awards close

7:00 p.m.

Awards presentation

VEHICLE MODIFICATION FAIR

ANNUAL GENERAL MEETING & AWARDS PRESENTATION The AGM will include the election of Board members, presentation of financial statements, and the annual awards presentation, recognizing the contributions of people in our community. The meeting is open to all members of Spinal Cord Injury Ontario.

Modified vehicles of all shapes and sizes will be on display and you can talk to the owners as well as various vendors. Ask questions of the users as well as experts and see all the different options available to you that will fit your budget. Thank you to our Vehicle Modification Fair sponsors!

YOU MUST RSVP by Friday, June 9th. You can register by visiting: www.sciontario.org/celebration or by calling 1-877-422-1112 Ext. 252.

2017 Shades of Ability Art Exhibition and Sale **CALL FOR SUBMISSIONS!!** The Shades of Ability Art Exhibition and Sale is now accepting submissions. The show is open to all artists, professional or amateur who are living with a disability.Original art works in oil, watercolour, acrylic, drawings, photography or mixed media are eligible for submission. This is a juried show and awards will be given in each category with a monetary prize. There will also be a best in show award. For more info about the event and submissions please visit www.sciontario.org/shadesofability

•

Outspoken!

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Spring 2017

The deadline for submissions is Wednesday, May 31st, 2017.

A Fantastic Day on the Slopes Group shot of the many volunteers with CADS/NCD Ski Club and their students/clients of Spinal Cord Injury Ontario.

A great way for a family to get involved in a winter sport.

Elizabeth Woudsma learning how to sit-ski for the first time.

unshine, crisp snow and a crowd full of eager new sit-skiers began the day on Tuesday February 28th, at Sommet Edelweiss in Wakefield, Quebec. Thanks to the sponsorship and kind generosity of the Ottawa Law firm, Burn Tucker Lachaîne, Spinal Cord Injury Ontario in partnership with The Canadian Association for Disabled Skiers (CADS/NCD) were able to host our very first annual Learn to Ski Day for people with a spinal cord injury. The CADS/NCD Ski Program is very fortunate to have such a large group of highly skilled, dedicated volunteers who graciously volunteered their time to create a fun, easy learning experience for the new sit-skiers. Each skier was matched with two volunteers who introduced them to the

basics of learning how sit-ski, from leaning techniques, loading and unloading onto the chairlift and using their abilities to the maximum potential. Many participants were nervous yet excited about what to expect when getting to the top of the mountain. A couple of women from Burn Tucker Lachaîne even found the courage to try out a sit-ski to gain a different perspective of the mountain. By the end of the day the huge smiles on everyone’s faces said it all. New friendships were made, confidence levels were elevated, and most of all we all had FUN! Life doesn’t get any better than spending the day on the slopes in the sunshine with your friends! No matter what everyone’s abilities were that day, we were all just a group of athletes enjoying a good old Canadian winter on the slopes. A BIG THANK YOU to Burn Tucker Lachaîne for making this day possible! For anyone who has a disability or not, and finds the winter long, I would strongly encourage you to join a winter sport. Being involved in sport is a great social activity that is good for the mind, body and soul. Whether it is becoming a participant or joining to become a volunteer, CADS is a fantastic organization in which to be a member. Visit http://disabledskiing.ca/ for more information. ●

Estates & Wills Information Session and Afternoon Tea Join us for an information session about planning for the future.

n expert in financial and estate planning will discuss options and answer your questions. Learn about leaving a lasting legacy while taking care of what’s important to you – those you love and the charities you care about. Shaun Westlake, a member of Spinal Cord Injury Ontario’s Board of Directors, will host the afternoon session.

Thursday, May 11th, 2017 2:00 p.m. to 3:30 p.m. Location: Longos Leaside, The Loft 93 Laird Drive, Toronto Tea, Coffee & Light Refreshments Provided

Please R.S.V.P. by April 28th to: Lynn Mineque, Manager Special Events, (T) 416-422-5644 Ext. 221, (E) lynn.mineque@sciontario.org Guests welcome to attend. ●

Spinal Cord Injury Ontario

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Top Fundraising Individual and Team

KW Top Fundraising Team

Kitchener Roll & Bowl

London Roll & Bowl By Sheila Daniel, Development Officer, Major Gifts

The wonderful team of our Sam McGillivray's Team London area volunteers have done it again! On Monday, February 27th, they held the London Roll & Bowl event and raised almost $23,000! This exceeded their $20,000 goal!

he energy in the alley was amazing and everyone had a wonderful time! There were fun prizes for the top fundraiser and best themed team as well as a wine basket raffle and 50/50 draw. Congratulations to: • Top Individual Fundraiser – Nigel Gilby, Lerners, who has been the top individual fundraiser at this event for the past six years • Top Fundraising Team – Lerners Littigutters • Best Team Theme – DMA Rehab Gutter Bugs • Special mentions go to: – New client and first time participant, Sam McGillivray, whose team came in second with the most pledges raised! – Lucy Lee, Cohen Highley, who won the 50/50 draw and promptly donated the full amount back to Spinal Cord Injury Ontario!

A big thank you to our volunteer intern from Fanshawe College, Meredith Clarke, and local Regional Service Coordinator, Melanie Collum, for organizing the 2nd Annual Kitchener Roll & Bowl event, on Tuesday, March 7th.

Top Individual Fundraiser Barb Shields with Meredith Clarke

e had a new location at Brunswick Frederick Lanes, and many new teams came out to try their bowling skills, resulting in a lot of laughter and fun! The event raised more than $3,200 to support people with spinal cord injuries. Congratulations to: • Top Fundraising Team – Samis Law, Bowlable Hours • Top Fundraising Individual – Ms. Barb Shields • Best Team Spirit – The Co-operators, Co-op Gutter Ballers

Thank you to the Center for Family Medicine and Dan Mataway from Desjardins Financial Security Inc. for sponsoring client teams, which allowed local clients and their families to participate.

And thank you to our emcee Matt Weaver, from Country 104 and to Bill Paul for his awesome balloon creations. As always a huge thank you to our many generous sponsors. • Food Sponsor – Beckett Personal Injury • Media Sponsors

• Lane Sponsors – Davis Martindale, DMA Rehability, Dyer Brown, Foster Townsend Graham, Harrison Pensa LLP, Hoare Dalton, Novus Rehabilitation, Pursuit, Rehabilitation Management Inc., Siskinds LLP, Spencer Experts Inc., Stride Rehabilitation Services and TK Mac • Team Sponsor – Cohen Highley • In Kind Sponsors – Flint Photography and Voyageur ●

• Outspoken! • Spring 2017

Best Team Theme.

Bill Paul

And a big thank you to our sponsors Larrek Investigations, Deutschmann Law and Silver Cross Automotive. Sulekh Khindria, President & CEO, Larrek Investigations, said, “We made a conscious decision and commitment to voluntarily contribute to the betterment of our community. We do this by supporting the organizations in our region that want to make a difference, and the events that are designed to get the ball rolling on these issues. “The Kitchener Roll & Bowl tournament, organized by Spinal Cord Injury Ontario, was a great way for Larrek Investigations to make a difference in the lives of people living with spinal cord injuries and other physical disabilities. Our company is dedicated to helping people in our community, in any way that we can – and we are also passionate about having fun! This KW Best Team Spirit bowling tournament was a great way for our team to come together for a fantastic cause, and we all had so much fun doing so!” ●

Both of these are being used to modify a vehicle. One is life-changing. One is life-threatening. Only QAP puts the right tools in the best hands to keep you safe on the road.

What you donâ&#x20AC;&#x2122;t know can hurt you. For caregivers and drivers with limited mobility, unregulated vehicle modifications done by those without the proper training can put lives at risk. Only Quality Assurance ProgramTM dealers are accredited to sell, install and service mobility equipment that puts your safety first. Ensure your adaptive vehicle is tailored to fit your every needâ&#x20AC;&#x201D;say no more to dangerous modifications and know more about your safe driving options.

Find a QAP dealer near you at NMEDA.com/OS or call 844-232-1733

By Chris Bourne, Regional Services Coordinator

W Sweeping for Spinal Cord Injury Ontario The 3rd Annual Homan/Hogan Charity Open Cash Spiel was held on the weekend of February 25th, in Smith Falls, and once again, this was an amazing event.

S E C O N D

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ReelAbilities Film Festival Toronto #CinemaForAll

The Miles Nadal Jewish Community Centre (MNJCC) is pleased to announce the programming lineup for the second annual ReelAbilities Film Festival (RAFF) in Toronto, taking place May 11th – 18th, in various venues across the city. 28

• Outspoken! • Spring 2017

ith the generous support of the Smith Falls Curling and Squash Club, key organizers Dan Andress from Andress’ Independent Grocers, and Paul Vaillancourt and Nick Ritchie from Four Degrees Brewing Company arranged for 22 teams to come together for a weekend of fun and competitive games. The event is held in honour of Marshall Hogan, a Smith Falls resident who in 2008, was involved in a car crash. Marshall sustained a spinal cord injury and is quite familiar with the issues someone faces, and the support they need following such a life-changing event. Recognizing the reach and impact that Spinal Cord Injury Ontario has in serving clients across the province, Marshall and Dan chose it as the beneficiary of their annual bonspiel. They teamed up with the former provincial junior men’s and provincial mixed champion Mark Homan, to establish this popular bonspiel in 2015. This year the event raised $7,900, including the $600 and $400 that the first and second place team winners donated back to Spinal Cord Injury Ontario. Thanks to Marshall Hogan, Mark Homan, Dan Andress, Nick Ritchie (and his colleagues Chris and Tim), Paul Vaillancourt, Ann McGahey and the staff/board at Smith Falls Curling and Squash Club, members of all 22 teams who took part in the event, and the many other volunteers and sponsors who played a role in making this event such a smashing success. YOU ROCK! ●

eelAbilities is the first and largest festival of its kind in Canada and will screen 17 films, including Canadian and International premieres from Brazil, Canada, Hungary, Israel, Ireland, Iraq, New Zealand, United Kingdom and the United States – showcasing disability and Deaf cultures through film. The Festival will also include a free Family Film and Arts Day at Holland Bloorview Kids Rehabilitation Hospital; film industry workshops; meet-and-greets with casts and directors; panel discussions addressing the intersections of sexuality, employment, disability and art. “The magic of cinema should be accessible to all,” said Liviya Mendelsohn, Artistic Director of ReelAbilities Toronto Film Festival. “Yet many film screenings present barriers to the one in five Canadians with disabilities, and the stories of people with disabilities are underrepresented in media and film. Our festival offers a model of accessible screenings for all audience members. With more than 30 community partners, we’re excited to open minds and hearts, and celebrate disability and Deaf cultures.” A jury of artists, filmmakers and curators of all abilities have selected the powerful films which are supported by a variety of sponsors and community partners. TICKETS: General tickets are $15 per screening and are on-sale now at http://toronto.reelabilities.org/ or in person prior to each screening with cash payment only. Discounted ticket prices are available for seniors, students and those on a fixed income. Children under five are free. There is no charge for support people. For more information about the festival, and to view the amazing lineup of films that will be screened, please visit http://toronto.reelabilities.org/. ●

heart of innovation

Abilities Expo Toronto 2017 As new wheel technology develops, we get to go farther and faster. By Julie Sawchuck

The Abilities Expo made its Canadian debut in Mississauga, January 20th – 22nd, and this country mouse made the two hour drive to the big city to attend. The weekend promised everything from wheelchair dance demos and nutrition workshops, to new products for people with all types of disabilities, along with give-it-a-try sports demonstrations.

Evacuscape Chair

F Genny Mobility

• Outspoken! • Spring 2017

rom an SCI perspective I would have called it the “mobility” show – that was my focus. I had many opportunities to witness and even try for myself new ways of getting around, and not just on flat land. Living in rural Ontario provides many challenges but the biggest one for me so far has been how to get around on my farm and get back on the hiking and biking trails. My TiLITE chair only gets me so far before uneven surfaces bog me down. Attending the Abilities Expo helped shed some light on what else is out there. Because I currently live in a two storey century old farmhouse, the first thing that caught my eye was what I would call a “human dolly”. It’s actual name is the Evacuscape Chair. The primary function of this device is to get a person with a physical disability down the stairs in case of an emergency. Just transfer from your chair to the seat and your non disabled companion will bump you down the stairs to safety. Every cruise ship, hospital and school with elevators should have these. Perhaps an increased institutional demand would bring the cost down - Evacuscape Chairs start at $1,295. (www.evacuscape.com) The biggest buzz I got when I was at the show was generated by the only mobility device using Segway technology licensed for medical purposes in Canada. The Genny Mobility uses gyroscopic self-balancing technology, where leaning forward and backward and using the steering handle causes motion. I had the chance to use it on the showroom floor and found it quite easy to learn. I was curious to know how well it would handle on my farm and the salesperson showed me a video of woman who uses it on her farm to herd sheep! I can see this being a great way to get around my ten acres, but starting at $29,000, it costs more than my Mazda5! (www.gennymobility.com) Although they were not set up at the Expo, I ran into the guys from SoftWheel. These wheels were developed in Israel for use with wheelchairs, bikes and automobiles. They use an in-wheel suspension system that absorbs more impact than traditional wheels or in-frame shock systems.

SoftWheel Acrobat

Because these wheels are compatible with any wheelchair system, I easily swapped out my regular wheels for theirs with a quick tilt of my chair, and I was able to use them in the comfort of my own seat. There was no discernable difference until I got outside on uneven ground. I tried bumping down the curb a couple of times and the experience was amazing. I could barely feel the bump! I imagine that the reduction in impact and vibration over the course of the day would really help those (like me) who suffer from back pain. SoftWheel hopes to have their technology for sale in major mobility outlets in Canada soon. (www.softwheel.technology) The final piece of mobility technology that really caught my eye was the chair that Jeff Adams, a Canadian Paralympian was sitting in. ICON Everyday

Wheelchair is fully adjustable in seat position, back tilt and support, footrest height, dump, giving the user the ability to adjust their chair as they grow and become more comfortable as a user. They also had the ICON Explore on demonstration. It is an electric powered, three-wheeled, fat-tire mountain bike wheelchair of awesomeness! This is the set of wheels that will get you back outside, in the park on trails or in the backcountry. (www.iconwheelchairs.com) Hats off to Abilities Expo for bringing together a wide range of mobility devices under one roof. Dealers who we usually go to tend to carry only one brand or a certain large ticket device, so it was lovely to see such a large variety in one place and be able to try them out. With so many ingenious ways to get around on wheels I would buy them all, if only I could afford to, but in the end I would need to build a new garage to house them all! Visit: #sharetheroad or www.juliesawchuck.blogspot.com â&#x2014;?

ICON Explore

ICON Everyday Wheelchair

Spinal Cord Injury Ontario

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Gaining Independence and Opening Doors through Smart Technologies By Mary Dufton

T Most of us today use technology in one form or another. Cell phones and I-pads enable us to contact our friends and family via Facebook; email and text. But what if you could use an application on your smart phone or iPad to use an elevator in your home, office or at your local recreation centre?

• Outspoken! • Spring 2017

he team at the Good Access Company is passionate about technology and how it can help those of us with disabilities gain greater freedom and safety in our daily activities at home and outside. Peter Wolkosky and Luc Grenier worked in the healthcare field for about 20 years. They formed the Good Access Company, in March 2016, in Ottawa. The business, a partnership of three, including David Lacroix, focuses on mobility and accessibility needs for people with disabilities. Since it is new, it relies heavily on word of mouth. Luc Grenier works out of the Ottawa Rehabilitation Centre where he meets new clients. Marc Renaud develops technology for people with disabilities and finds ways to meet their needs (similar to Peter’s work), and David Lacroix coordinates the

assessments; purchasing and receiving and a variety of other tasks. The Good Access Company works closely with Eight-Fold Technologies, also based in Ottawa. Eight-Fold produces accessibility products that they distribute. Peter became acquainted with the company’s founder, Ke Wang when he heard about the smart chair (a power wheelchair that is smart phone controlled), and was exploring other products to develop to help people with disabilities. Peter wanted to look at ways that a smart phone could be used to help individuals with limited or no hand movements use an elevator, much like Ke uses his smart phone to control his wheelchair. This specialized wheelchair add-on was developed by Ke, an engineer, who

sustained a spinal cord injury after being hit by a car. Ke used his personal experience as a person who uses a wheelchair, and his skills as an engineer to develop this remotely controlled power wheelchair. Working with clients involves a lot of trial and error to meet their needs. The first step is to have a referral from an occupational therapist about a client and their requirements. Everyone is unique and it is costly to develop the technology. While the initial visit usually takes about an hour, looking at the client’s environment, and developing the technology and the problem solving to meet their needs can take longer. “Technological solutions exist, but it is not a straightforward path to find them. It’s also fitting the visits into the clients’ schedules which may include attendant care. This comes at certain times of the day and you need to be flexible,” Peter says. Peter meets with the client, conducts an assessment to review what they are currently using, their preferences – mounting the tool to the wheelchair or bed, their desired level of control and then he compiles a package of solutions. The interface is created to make the phone switch accessible. A complete home access system is developed and there is a training period to ensure the client can use the systems. As an example, a client who was referred to the Good Access Company lived in a two-story house

with a residential elevator. The client was unable to use the elevator buttons because he could not use his arms or his fingers. With a software application that was developed by Eight-Fold installed on his I-phone, along with the hardware that was installed on the elevator, the problem was solved. Peter also recalled another client who had multiple sclerosis and used a power wheelchair. She wanted to be able to make phone calls from her bed. Although voice and switch activated phones exist, they are expensive and don’t work very well, so that was not an option for her. Peter visited her at home and conducted an assessment. He attached a device to her bed and wheelchair and along with an application to her IPAD and smart phone. The device enabled her to make phone calls, watch television, and access her IPAD while in bed. From her IPAD, she can see who is at the door when the doorbell rings. Peter also installed a door opener that she can access from her wheelchair and her cell phone. “She is gaining independence with every extra layer of technology added to her home.” Peter says. The cost of the technology is a barrier for many clients. The company works closely with Angela Clair, regional coordinator at Spinal Cord Injury Ontario who helps get the required funding in place. Keeping up with changing technology is also an ongoing challenge. The company is also looking at using Amazon Alexa (an intelligent personal assistant capable of voice

interaction and more), and other home automation devices that are on the market, which are becoming more available in Canada. The company website is up and running and continues to evolve. Along with the challenges, there are rewards too. From Peter’s expertise and dedication, his clients can control their home environment, such as make calls and control their televisions, and be more independent and happier.

“While ramps and porch lifts are essential, if you cannot open your front door or move from one floor to another, you really are not independent,” says Peter. For Peter and his team at the Good Access Company, finding solutions for their clients are rewards in themselves. Here are some useful websites: www.goodaccess.ca www.eightfoldtech.com ●

SMART CHAIR

Here are some examples of how Smart chair has made my life easier: as told by Ke Wang: 1 When using the bathroom, when I transfer to my shower chair or the toilet, I can use my phone to move my power chair away, and then call it back when I am finished. 2 It allows me to transfer to my couch to watch TV and stretch out my legs to prevent my feet from swelling up. 3 With the Smart chair, I can move my power chair so it doesn't block my view to the TV.

4 It allows me to transfer on to a regular chair and have a meal at a friend’s place or restaurant when they don’t have a table that’s accessible. I can transfer, drive the power chair away and then call it back when I need it. 5 It allows an attendant to independently drive their client’s power chair perfectly straight and at a constant speed to load into a van or go through a doorway.

Spinal Cord Injury Ontario

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Paralympic Trailblazers Named To Canadian Paralympic Hall of Fame Class of 2017 The Canadian Paralympic Hall of Fame recognizes and celebrates those who have made a significant contribution to the growth and development of the Paralympic Movement in Canada.

ome of Canada's most accomplished Paralympic athletes, coaches and builders were honoured in Ottawa on April 7th, for the Canadian Paralympic Hall of Fame and Sport Awards ceremony.“The outstanding achievements and the pioneering successes of all our inductees is a wonderful cause for celebration and recognition,” said Karen O’Neill, CEO of the Canadian Paralympic Committee. “Congratulations and thank you to each one of them for their trailblazing careers and dedication to excellence in Paralympic sport.” A group of five uniquely accomplished individuals were announced as the Canadian Paralympic Hall of Fame inductees for 2017. They were: Karolina Wisniewska

COACH CATEGORY

Ozzie Sawicki (Cochrane, Alberta) is a Canadian Chartered Professional Coach who has been involved from entry-level recreational sport delivery through to worldleading high performance sport for over 25 years. He was the head coach and program director of the Canadian Para Alpine Ski Team from 2000 to 2004, head coach of the Para Athletics program with Athletics Canada from 2009 to 2011, and performance advisor to the Canadian Para Equestrian Team at the London 2012 Paralympic Games. He was Canada’s Chef de Mission for the Sochi 2014 Paralympic Games.

BUILDER CATEGORY

Carla Qualtrough (Delta, B.C.) is the Minister of Sport and Persons with Disabilities. A champion in her commitment to addressing inequality and diversity, she has practised human rights law at the federal and provincial levels and has volunteered locally, nationally, and internationally, including with the International Paralympic Committee and the Toronto 2015 Pan/Parapan American Games. She has been president of the Canadian Paralympic Committee and Chair of the Sport Dispute Resolution Centre of Canada. She won three Paralympic and four world championship medals in swimming.

Archie Allison (Toronto, Ontario)

ATHLETE CATEGORY

Karolina Wisniewska (Ottawa, Ontario) is a three-time Paralympian and winner of eight Paralympic medals in Para alpine skiing. She won two silver medals at Nagano in 1998, two silver and two bronze medals in Salt Lake City in 2002, and two bronze at Vancouver 2010. Her four medals at the Salt Lake City 2002 Paralympic Games set a new record at the time, as the first Canadian winter sport athlete to win four medals at a single Olympic or Paralympic Games.

Maureen Orchard (right)

• Outspoken! • Spring 2017

is a legendary figure at Toronto’s Variety Village, a centre that helps people with a disability develop a healthy lifestyle through sports, fitness and physical activity. He currently serves as the centre’s Director, Access and Awareness and has been on staff since 1984. Over that time, it is estimated that his tireless efforts have helped more than 10,000 students, coaches and volunteers from schools and community groups experience the power of inclusion and the joy of physical activity.

Maureen Orchard (Winnipeg, Manitoba) has revolutionized the sport of wheelchair basketball at home and abroad. She brings more than 30 years of experience and dedication to the sport. Currently the International Wheelchair Basketball Federation (IWBF) secretary general, Maureen began volunteering in wheelchair sports in 1985 as treasurer of the Canadian Wheelchair Sports Association (CWSA). She was a key player in the establishment of the Canadian Wheelchair Basketball Association (CWBA) – now Wheelchair Basketball Canada – in 1993, and served as President of the CWBA from 1993-1998. ●

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home life

I have been helping people buy and sell barrier free homes for almost 13 years. At times it has been a challenge to convey the value of home modifications that will benefit future buyers. But things are changing. Significant developments are taking place in the housing industry – in both the new build and home modification sectors.

location and details were still being discussed. However, the builder is planning to pre-sell these condo units in the fall of 2017, with occupancy in 2 to 3 years. This builder will be breaking new ground by venturing into the accessible housing market. And I would like to support the builder by demonstrating there is a strong demand for these units. The condo units will range in size and I anticipate they will include a variety of floor plans: one bedroom/one bath; one bedroom/den/one bath; and two bedroom/two bath. If you share my excitement for this opportunity, please contact me and I will keep you informed as this project evolves. Together we can reinforce the fact – there is demand for barrier free homes in the condo marketplace.

New Barrier Free Condos

Home Modification Canada

Home builders are recognizing the need to bring barrier free units onto the marketplace. I have been working with a GTA condominium builder who sees the growing demand. At the time of the writing of this article, the exact

Another exciting development is evident through Home Modification Canada, “A coalition to improve safety and accessibility of homes through modification.” Currently there are a variety of organizations and programs attempting to address the growing need for home modifications to provide both safety and accessibility for home owners and tenants. Home Modification Canada was spearheaded by Caregiver Omnimedia, the publisher of Home Modification Guide, to address the need. Following Home Modification Summits in 2012 and 2015, a Steering Committee was formed to formalize the partnership between industry and homecare leaders. As a result, there is now a coordinated approach within the home modifications sector to enable consumers to access accurate information on qualified professionals, financing, specialty products, technology, and other industry partners. Home Modification Canada is helping to promote innovation in all aspects of barrier free living. As a result, people living with disabilities will be able to live in safer, more accessible homes. I am proud to be a supporting organization.

Exciting Developments on the Horizon for Barrier Free Real Estate

By Jeffrey Kerr

BARRIER FREE

REAL ESTATE WHEELCHAIR ACCESSIBLE HOMES, CONDOS AND INVESTMENT PROPERTIES

Click on the Listings Page for Barrier Free Real Estate Listings

The Special Needs of Families

Jeffrey Kerr BROKER

Senior Real Estate Specialist (SRES) Master Accredited Senior Agent (Master ASA)

416.424.2222 36

• Outspoken! • Spring 2017

Finding all of the best features to meet a family’s needs can be a challenge at the best of times. But finding the perfect home for families who have children with disabilities requires unique knowledge. I have the privilege of working with organizations such as Erinoak Kids in Peel Region, Grandview Kids in Durham Region, and Holland Bloorview Kids in Toronto to provide guidance and resources throughout the process. I am able to help families look at the options: home modifications to their current home versus making a move to a more suitable home.

It is exciting to see that the growing awareness of the needs of families and individuals of all ages who require safe, accessible housing is getting a little easier to navigate.

modification experts and the many professionals who support individuals of all ages who have a disability are leading the way for the positive changes taking place in the world of barrier free living.

On the Lighter Side

BarrierFree.blog

Although this particular trend is not local to Ontario, housing to accommodate people with disabilities and aging in place for seniors is gaining attention around the world. And one development in Florida is already breaking records with the number of people who have registered to be among the first to know about “Margaritaville Latitude” – a development backed by singer Jimmy Buffett. In addition to accessible features within each unit such as wider doors, step free entrances and barrier free washrooms, the amenities will provide a fun lifestyle experience. Awareness brings change. It is reassuring to know that developers, home

I’m proud to announce the launch of www.BarrierFree.blog. This site is about people, products, companies, and all things related and sometimes unrelated to Barrier Free Real Estate and helping people achieve freedom at home. Tell me your story – guest bloggers welcome! For more info please contact: Jeffrey Kerr, Broker, Barrier Free Real Estate Specialist, RE/MAX Unique Inc. • (T) 416.424.2222 www.AccessibleHomeFinder.com ●

Helpful Tips for Caregivers By Dr. Chris Oswald

egardless of a person’s age, whether their injury is temporary or permanent, partial or complete, there are five common factors everyone who has sustained paralysis shares: • Stiffness in muscles (including soft tissue like tendons and connective tissue); • Immobilization of the joints/lack of joint play; • Inflammation or swelling from lack of the physiological pump created by movement using muscles; • Pressure points in the skin and muscles; and, • Anxiety created by peripheral pain.

Managing these states can be difficult for the patient; however, they are not alone. Caregivers and family members who help lift/move the injured person are also subject to sustaining the same symptoms, just for different reasons: heavy lifting. Lifting people is arduous and requires full body strength that most people are not physically equipped with. During the process, strains to the tendons and joints evolve out of tissue exhaustion and repetitive use. Stretching routines and targeting potential/already existing areas of inflammation are essential protocols for minimizing pain. Here are three recommendations to help you address pain in these areas.

1. Rehydrate your Muscles and Joints Lubricating your joints is essential for reducing inflammation and spasms. As the caregiver/family member, stretching must be done daily and repeatedly to lessen tension as well as ease joint pressure, pain and nerve excitation, which is responsible for much of the muscular contraction. Here are six stretches that target key areas susceptible to injury. Practice before, during and after work to lubricate your muscles, reduce likelihood of inflammation and to prepare you for the challenges ahead. • Hold each for 30 seconds (both sides); • Always keep your back neutral and your hips aligned – never pop your ribs; • Pull/press gently; • Breathe deeply – imagine your breath penetrating tight areas.

2. Sit Properly Sitting is sometimes a necessary evil, which means doing it properly is paramount. If using a non-ergonomically friendly chair, supplement with a visco

or HR foam cushion. Avoid standard foam as it provides the lowest quality of support and longevity. Choose one that is contoured, not flat, as the curves support your pelvis and spine, easing the stress on your lower back and surrounding muscle tissue. Travel tip: Work on the go? Buy two so you never need to compromise. Work tip: Keep both yourself and the injured person you are caring for off of soft couches. Soft furniture allows the ligaments to stretch causing the joints to become unstable making you more susceptible to worsen and/or develop an injury.

3. Explore the Power of All-Natural Topical Pain Relievers • Magnesium – relaxes stiff muscles, promotes circulation which lessens inflammation and pain • Chondroitin Sulfate – enhances cartilage repair • MSM – reduces inflammation • Menthol– enhances blood flow and aides in the delivery of molecules through the skin • Wintergreen Oil – anti-inflammatory and aids in dermal absorption • Eucalyptus Oil – enhances drug delivery across the dermal layer • Grape Seed Oil – aids in healing damaged tissue Topically, these ingredients work together to promote tissue healing by permeating superficial fascia/muscle, which enhances circulation to reduce inflammation and pain both acute and chronic. Product Tip: MuscleCare: a magnesium-driven roll on/ointment containing 10-15 NSAID –, paraben – and dye – free ingredients (including all of the above). MC is safe for breastfeeding/lactating women, people on various medications and can be used as frequently as needed*. Studies show that participants reported MC provided longer relief and improved flexibility more than other leading national brands. Use in conjunction with routine stretches to maximize relief and increase mobility and safe to share with your patient as needed. It is important to remember while caring for people with spinal cord injuries that addressing the “less severe” sites in conjunction with the primary is critical. Where possible, encourage muscle-rehydrating stretches with topical relief to ease surrounding inflammatory areas. If we assess post trauma stabilization, we might be surprised at how much more comfortable our patients, family members or friends become. For more information, visit www.centreforfitnesshealthandperformance.ca or to contact Dr. Chris Oswald, call (T) 416-972-6279 or email office@oswaldchiropractic.ca ●

Spinal Cord Injury Ontario

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GUIDE TO ADVERTISERS

My New Power Chair Has Arrived

Spinal Cord Injury Ontario thanks its advertisers who have made it possible for the production of this issue of Outspoken! For information about advertising in Outspoken!, email Bev Jenkins at bev.jenkins@sciontario.org

By Frank Pozen

INSURANCE Insurance Bureau of Canada www.ibc.ca

LEGAL

The accompanying picture is my brand new power chair. It’s a Permobil F3. Those who read my stories regularly will know that I tried this chair out at the 2015 People In Motion (PIM) show knowing that I would be getting a new chair in 2016.

or me, the main selling point of this chair is that it comes with snow tires. That’s because it has a mid wheel drive. Most power chairs get stuck in the snow. It has some other features including one extra that I have been asked by my supplier not to discuss because if I do, everyone else will want one. If you really want to know, you can direct message me on Twitter. I won’t break my promise publicly. This is my third power chair from my third different supplier. When I approached my previous supplier about the Permobil F3, he wasn't too interested, probably because Permobil’s tend to be more expensive than what they would normally supply. My previous chair was okay, but it needed service too frequently. The biggest problem seemed to be with casters and the forks that hold them. In fact, the left front caster went bad on Friday and probably needs to be replaced. And I should mention that chair is still here for now but it will be junked. When I went to the 2016 PIM show, I talked to Permobil and they suggested I talk to Randy Keith at Motion Specialties. He’s been in the mobility business for 40 years, and he knows how to handle Ontario government paperwork. He left me a demo to try out and I took it out on a road trip. The chair was ordered in August and it was finally approved in March. As I joked on Twitter, it’s like giving birth. When the caster went bad on Friday, I was going to call Randy to see where my chair was. But he called me an hour later to tell me he was bringing it that very day. The chair was manufactured to my specifications. The major difference is the seating is much lower because of my height. Not only can I get snow tires but the tires are filled with gel. So no more flat tires and the gel provides a smoother ride than air filled tires provide. My previous supplier tried convincing me to use hard rubber tires but they don’t provide a smooth ride which can lead to back problems. The only drawback to this chair is that it doesn’t manoeuvre as well indoors. That will take some time for me to get used to, but the chair has different speeds for indoor and outdoor mode. So I’m running it slowly indoors for now, and increasing the speed when I go out. I haven’t gone out to Rabbas yet and there are already two adjustments that it will need. I may find more when I take it out. One of the reasons Randy likes Permobil is that he says they don’t need service as frequently as other brands. We’ll see if that’s true. To follow Frank, you can visit his blog at frankp316.blogspot.ca. ●

• Outspoken! • Spring 2017

Gluckstein & Associates www.gluckstein.com McLeish Orlando LLP www.mcleishorlando.com Oatley, Vigmond Personal Injury Lawyers LLP www.oatleyvigmond.com Thomson Rogers, Barristers and Solicitors www.thomsonrogers.com

MOBILITY & MEDICAL SUPPLIES Assistive Designs www.assistivedesigns.com Ex N’Flex www.exnflex.com Hollister Incorporated Canada www.hollister.ca National Mobility Equipment Dealers Association www.nmeda.com/OS PDG Product Design Group www.pdgmobility.com Pine View Auto Group www.pineviewautogroup.ca 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

WELLNESS CENTRES Walk It Off www.walkitoffrecovery.org

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Rob is a seasoned litigator.

As an experienced advocate for seriously injured clients and their families, Rob Durante has successfully represented clients at all levels of court in Ontario. He is also an in-demand speaker and authority on issues concerning personal injury law. To relax at the end of the day, Rob enjoys spending time in the kitchen, cooking and creating traditional Italian dishes passed down from his parents. Rob understands that in litigation, a recipe for success includes prep work. Like a chef, a lawyer always needs to be in prep mode, getting ready for the next step. Adding creativity to the mix helps Rob blend all the ingredients he needs to build a difficult case into one that wins the day. Rob gets great satisfaction when heâ&#x20AC;&#x2122;s able to help provide a sense of justice and closure for family members who can then begin the healing process. That level of commitment means that when the pressure is on, Rob can really take the heat.

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