FALL 2013
Living with a rare illness
Conquering invisible disabilities can be amongst the greatest challenges, but it’s possible!
Paralympian Josh Vander Vies | Adventurer Spencer West
TABLE OF CONTENTS
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FEATURE
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19 LIVING WITH A RARE ILLNESS
Rare diseases affect over 300 million people worldwide, but there is still a stigma around unknown conditions. We examine the difficulties associated with having a rare disease and shed light on this shadowed kind of disability.
THE FRONT PAGES 06 Success Stories
Nicola Chivers, HR analyst at TD Bank Group, talks ideas and enthusiasm to fulfil your goals.
08 Getting outta here
Going abroad is certainly more of a challenge for people with disabilities, but with organization, research, and motivation, anything is possible.
10 The home advantage
The Canadian government is investing time and money into programs for all people. Find out how you can benefit!
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INSPIRATION 12 Water dollar disability
Mountain climber Spencer West was born with sacral genesis but doesn’t let it stop him. Read on to hear his incredible tale of scaling Kilimanjaro to raise funds for water in Africa.
16 Reaching your potential
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Born without arms and legs, Josh Vander Vies has become an inspirational figure, playing boccia for the Canadian national team, triumphing over his disability in every aspect of his life.
FALL 2013 | JOBPOSTINGS.CA
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THE FRONT PAGES INDEX
Masthead
WHOSHIRING
publisher
IFC TD Bank Financial Group 02 FINTRAC 07 Imperial Oil 07 Export Development Canada 11 Canadian Pacific OBC The Home Depot
schoolINDEX 18 Humber, The School of Business, Continuing Education
GENERALADs
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03 NEADS 05 Awake Chocolate 15 Canada’s Luckiest Student 23 Career Edge 24 Scholarships Canada IBC Insurance Institute of Canada
Nathan Laurie nlaurie@jobpostings.ca
associate publisher Mark Laurie mlaurie@jobpostings.ca
COMMUNICATIONS AND PROJECT MANAGER David Tal dtal@jobpostings.ca @DavidTalWrites
editor James Michael McDonald jmcdonald@jobpostings.ca @mcjamdonald
ART DIRECTOR Anthony Capano acapano@jobpostings.ca
DEVELOPER Mishraz Ahmad Bhounr mbhounr@jobpostings.ca
Want to make a difference? FINTRAC is recognized as a leader among the world’s financial intelligence units. Join the fight against terrorist financing and money laundering! To learn more about FINTRAC and its employment opportunities, visit http://www.fintrac-canafe.gc.ca
Vous voulez faire une différence? CANAFE est reconnu comme étant un chef de file parmi les unités de renseignement financier autour du monde. Joignez-vous à CANAFE dans la lutte contre le financement des activités terroristes et le blanchiment d’argent! Pour en savoir plus sur CANAFE et ses possibilités d’emploi, veuillez consulter le http://www.canafe-fintrac.gc.ca
JOBPOSTINGS.CA | FALL 2013
AD INDEX
CONTACT contributors Kate Aenlle, Angelina Attisano, Jamie Bertolini, Lauren Della Vedova, Nailah King, Hillary Di Menna, Laura Eley, Kyle Reynolds, Megan Santos, Sam Weltman
national account manager Mary Vanderpas
EDUCATION ACCOUNT MANAGER Shannon Tracey
BRAND AMBASSADOR BERNIE connect@jobpostings.ca @careerunicorn Photos from istockphoto. com are used throughout this issue; individual artists have been credited.
Published by Passion Inc. 25 Imperial Street, Suite 100 Toronto, ON M5P 1B9 jobpostings.ca 1-877-900-5627 ext. 221
Jobpostings publishes its (dis)ability issue annually. It is distributed to over 105 universities and colleges in Canada. Contents of this publication are protected by copyright and may not be reprinted in whole or part without permission of the publishers. Success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome.” – Booker T. Washington
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SUCK? Don’t limit yourself to working at the corner store. Visit Jobpostings.ca for the latest positions from Canada’s top employers.
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EDITOR’S NOTE
Push your limits From the desk of
James Michael McDonald We all face challenges. There are plenty of typical obstacles: getting good grades, finding the right job, dealing with difficult coworkers, even making the perfect omelette! Unfortunately, some of us have more challenges than others, daily struggles to overcome.
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Growing up with a disability isn’t easy. Simple tasks that able-bodied people overlook can be a constant burden for people with disabilities. These troubles, big or small, can give us reason to hesitate and limit ourselves. Because of this, many people with disabilities are only using a small portion of their potential. The reason behind this issue is to motivate you to do more and to show you that nothing is impossible. Struggles, for the able-bodied or for people with disabilities, give each person a unique perspective on the world and the chance to rise above their challenges using their own experience and abilities. In the pages to follow, we speak to a number of incredible individuals with disabilities that have achieved greatness, pushing past their obstacles to compete in the Paralympics, travel the world, and even climb Mount Kilimanjaro. We look at rare diseases in an attempt to shed light on an often overlooked kind of disability. We’ve also included informaJOBPOSTINGS.CA | FALL 2013
tion on financial opportunities for people with disabilities to ensure everyone has a fair shot at a stable future. Although the people interviewed have gone on to do amazing things and live fulfilling lives, we believe everyone has the ability for greatness; sometimes we just need the inspiration to bring it
out. Hopefully this issue provides you with the needed boost to push your limits and conquer your own Kilimanjaro.
THE FRONT PAGES
success stories
Nicola Chivers COMPANY: TD Bank Group Position: HR Analyst EMPLOYED: 2 Years Degree: Honours in Bachelor of Human Resources Management
troubleshooting computer issues, or delivering solutions to business partners through more formal project work.
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SUCCESS STORIES Wondering how to get to the top? Read on to find out how this young professional is succeeding in the business world. What drew you to HR within the financial services industry? The HR program at York University caught my interest for many reasons: the courses aligned well with my personality, and there was an abundance of specialization avenues, but with a defined career and certification path. How did you find your current position? I joined TD as part of an Ability Edge Internship (Career Edge Organization) in which I completed several rotational assignments across Corporate HR. I was initially offered a contract position with the Learning Technology team, which I gladly accepted. Several months later, I was invited to join the Talent Management team in a permanent position as a Specialized HR Analyst. Tell us a bit about your responsibilities. My duties have evolved dramatically JOBPOSTINGS.CA | FALL 2013
as I joined the team in the middle of an ongoing implementation project. Initially, the focus was to deliver, promote, and transition knowledge from our testing team to the frontline users and long-term support team. Recently, I’ve been working with business leaders to provide analytic measures of success, challenge, and opportunity. What’s the most challenging aspect of your position? Managing expectations and staying on track. In a large corporate environment, the stream of emails is constant and it is a challenge to determine and communicate which requests align to the team’s objectives, and to balance my ability to provide assistance with my capacity to do so. What is the most rewarding part of your job? Resolving problems, whether that involves sharing technical knowledge,
What do you think it takes to be successful in this career? Passion for learning combined with do-it-yourself enthusiasm and undying persistence. When given a task, always do some background research before going back with questions. This keeps you informed and your manager will appreciate the higherlevel questions and the ideas you can now contribute. Any future career aspirations? My ideal position would involve idea generation. I excel at brainstorming and enjoy the challenge of analyzing a tricky situation and offering potential game-changing solutions. I’d also like to be a mentor, offering insight to inspire, influence, and shape perspectives of newer employees. Any advice you have for students looking to land their first job? Enthusiasm is your greatest asset; always focus on possibilities, not roadblocks. If your brain is focused on the reasons it won’t work, it doesn’t think of ways it could. Know what makes you unique, infuse this trait into your ‘elevator speech’ and use it to articulate your worth when asked “Why should we hire you?”
Discover what’s possible for your career. There’s more than one way to make a difference. That’s why at Imperial Oil we offer multiple career paths that align with your ambitions. From developing new innovations in the oil sands to delivering high quality petroleum products, whatever your career, you’ll always have a place on a team that’s working towards creating a better future.
Hiring students and graduates from engineering, science, business and trades & technology.
imperialoil.ca/careers
Export Development Canada | Exportation et Développement Canada Interested in international trade, global markets and the impact of Canadian exports? EDC offers you a unique and rich opportunity, and is recognized as a global centre for trade expertise. Our employees are among the most accomplished trade experts in the world. What we look for: Bachelor of Commerce/Business Administration and/or MBA with a concentration in Finance, Accounting, International Business or related field (Sales, IT, HR etc.); individuals who have a desire to work in a fast-paced environment with competing priorities and deadlines; ability to interpret financial statements and strong analytical skills; commitment to providing excellent customer service; ability to communicate effectively in both official languages and must be legally eligible to work in Canada (Canadian Citizen or Permanent Resident). EDC is committed to employment equity and actively encourages applications from women, Aboriginal people, persons with disabilities and visible minorities.
Vous vous intéressez au commerce international, aux marchés mondiaux et aux répercussions des exportations canadiennes? EDC vous offre alors la chance de vivre une expérience riche et unique. En effet, EDC est un centre d’expertise du commerce extérieur reconnu à l’échelle mondiale, et nos employés sont au nombre des plus grands spécialistes du domaine. Ce que nous recherchons : baccalauréat en commerce/Administration des affaires et/ou MBA (finances, comptabilité, affaires internationales) ou dans un domaine connexe (ventes, RH, informatique etc.); désir de travailler dans un milieu affairé, où les priorités peuvent être divergentes, et les échéances, serrées; très bon esprit d’analyse et capacité d’interpréter des états financiers; engagement à fournir un excellent service à la clientèle; aptitude à communiquer dans les deux langues officielles et aptitude légale à travailler au Canada (citoyen canadien ou résident permanent). EDC souscrit au principe de l’équité en matière d’emploi et invite les femmes, les Autochtones, les personnes handicapées et les membres d’un groupe de minorités visibles à poser leur candidature. www.edc.ca/careers | www.edc.ca/carrieres
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STUDYING ABROAD
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Getting outta here Experience the most during your time abroad. Making the decision to study abroad isn’t always easy. There are lots of things to consider like finances and how prepared you are to live in a foreign country. The decision can be made even more difficult when you have to take your disability into consideration. One way to ease your transition into a foreign country is to try and learn the language of the country you’ll be going to. Although this is not a JOBPOSTINGS.CA | FALL 2013
specific disability-related tip, knowing the official language is extremely helpful. You don’t have to be fluent, but learning some basic phrases can go a long way if you should ever need assistance. Before you start packing away language books, there are some other things you should make sure you’ve covered—for instance, finding out what studying is like in the country you’ll be living. Uwe Hahnewald, a business administration student, is visually impaired. When he decided to go to a different country to study, he made sure to do his research upfront. “I like to know a little bit about where I am going,” he says. “I familiarized myself with the subway and bus sys-
tem, or which shops are in the area I am living in.” Getting to know the neighbourhood and city you’ll be living in can be a great help in making a smooth transition into your new surroundings. Doing research can also give you an idea of how accessible certain areas are, as well as what the public transportation system is like, should you require something like Toronto’s WheelTrans service. According to Melissa Nisbett, communications manager with the Canadian Bureau for International Education (CBIE), students can find out in advance what kind of environment they’ll be in by speaking directly with the schools that they plan on attending. “Institutions can provide assessment
“We also provide sessions for our members on the best practices for student placements at our annual conference,” says Nisbett. “Our members prepare their students through assessments with either the international student office or accessibilities office.” There are many other organizations out there that assist students with disabilities to achieve their post-secondary education goals, like the National Educational Association of Disabled Students (NEADS). They encourage “the self-empowerment of post-secondary students with disabilities,” and “advocates for increased accessibility at all levels so that disabled students may gain equal access to college or university education, which is their right.” Organizations like NEADS may also be beneficial to students with disabilities, since NEADS’ board members are all “consumers with disabilities, with the exception of the ‘open’ rep.”
tests for students to identify issues and follow up with students to identify the best locations for each student,” she says. “Students can do their own research for institutions by contacting the accessibility office, or the international student offices of the places they are interested in.” Hahnewald agrees. “Get in touch with the school to see whether they offer disability services and what kind of accommodations they offer. If possible, try to get a hold on a former disabled student who can share their experiences with you.” Speaking with students like Hahnewald and getting a feel for what life in a foreign country will be like for someone who has a disability is a great way to get the next best thing to a first-hand experience. Knowing
what you’re in for before you get on a plane might also make the decision to stay or go much easier. Hahnewald also recommends making a trip to the city where your school is, as studying abroad is a long-term decision and, sometimes, you just need to experience things for yourself. He was fortunate enough to have vacationed in the country where he studied so he had an idea of what life would be like for him if he lived there. Getting assistance from organizations well before you get to your new location. Organizations like CBIE, for example, encourage their over 150 members, (which include colleges, universities, and partner organizations), to serve vulnerable groups including individuals with visible/non visible disabilities.
When making the decision to study abroad, students may overlook travel accommodations. Queen’s University, for example, produced a fact sheet for students with disabilities hoping to study abroad that outlines everything you need to know before you pack your bags. It includes links to guides, videos, mailing lists, and other resources from reputable organizations in this field like Transitions Abroad, as well as region-specific resources. Uprooting yourself to study abroad is arguably one of the most exciting and challenging experiences for a student. Hahnewald, who had a great experience studying abroad, recommends that other students who want to do the same give it a shot and not let their disability determine whether or not they should go. “I recommend studying abroad because it expands your horizons,” he says. “I think confidence, organization, and research is everything [if you want to study abroad]. The more I know upfront, the easier it was.” | Kate Aenlle FALL 2013 | JOBPOSTINGS.CA
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THE FRONT PAGES
GOVERNMENT INVESTMENT
needs all of our available talent at work,” says Minister Finley. “That is why Economic Action Plan 2013 is increasing opportunities for people with disabilities, helping them gain the skills and training they need to better participate in Canada’s labour market.” Another way the Canadian Economic Action Plan is increasing opportunities for employment among people with disabilities is by trying to propel the increase in their employment through the Canadian Employers Disability Forum. The program will be “managed by employers, for employers, to support education, training and sharing of resources and best practices concerning the hiring and retention of people with disabilities.” This will ensure that the skills of people with disabilities will be promoted, in order to show employers that they’re valuable to the workforce.
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THE HOME ADVANTAGE Canada’s investment in people with disabilities. Supporting people with disabilities is an essential part of ensuring that they have bright and promising futures, especially when it comes time for them to find employment. The Government of Canada is taking steps to ensure that people with disabilities meet their career goals, through the Canadian Economic Action Plan. Last year, they invested an additional $30 million over three years in an opportunities fund. According to the Canadian Economic Action Plan, this investment will “enable more Canadians with disabilities to obtain work experience with small- and medium-sized businesses,” as well as raise awareness among employers of the contribution people with disabilities can make to their business, and encourage them to hire people with disabilities. In a news release from the Human Resources and Skills Development Canada, The Honourable Diane Finley, Minister of Human Resources and Skills Development, describes why it is important to invest money in programs to help people with disabilities find employment. “Canada JOBPOSTINGS.CA | FALL 2013
These plans and programs will hopefully increase employment among people with disabilities. Reports show that employment rates for people with disabilities are on the rise and, hopefully, the continued progress of the Canadian Economic Action Plan and the Canadian Employers Disability Form will keep this trend going. In the 2013 government budget plan, people can expect the continuing support for these programs. It outlines: The introduction to a new generation of Labour Market Agreements for Persons with Disabilities by 2014, which will better meet employment needs of businesses and the employment prospects of people with disabilities. Reforming and extending the Opportunities Fund with $40 million per year starting in 2015–2016, in order to provide more training solutions for people with disabilities. Extending the Enabling Accessibility Fund, a fund that supports capital costs of construction and renovations to improve physical accessibility for people with disabilities by $15 million a year. The budget plan also stated, “since 2006, the government’s top priority has been the economy and job creation.” In years to come, these programs should help create more opportunities for employment for people with disabilities, as well as increase their accessibility which, in turn, will promote a more diverse workforce. | Kate Aenlle
CANADIAN PACIFIC
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Canadian Pacific’s New Ogden Headquarters
Welcoming and Inclusive
Canadian Pacific (CP) is committed to employment equity and diversity. Through Workplace Accommodation Policies, CP is ensuring all eligible employees are able to come to work every day. The decision to relocate CP’s Calgary headquarters to its Ogden Yard presented a unique opportunity to demonstrate the company’s desire to provide workplace accessibility to all.
onstrates in his field belies the fact that he is legally blind. “Since the time I joined CP, the company has provided me with the tools required to excel in whatever I’ve been asked to do.” For example, Peter was provided with the JAWS adaptive screen reader program, which converts text into speech.
Peter Quaiattini, who works as a database administrator, has been actively involved with planning CP’s new headquarters to meet and exceed accessibility and employment equity requirements.
As adaptive technology has advanced, so too have the standards to which corporations are held. With the full support of CP’s executive group, Peter has worked successfully to ensure CP stays ahead. With the upcoming move to Ogden Yard, CP’s Facilities group consulted with Peter to ensure his safety and needs were being met.
“CP is an inclusive employer,” says Peter. “It is critical that every component of our office, from internal and external applications, parking, to our washrooms, are accessible to everyone.”
“Members of our Facilities group have shown a keen interest to learn the requirements to make Ogden safe and accessible, both inside and out, for those of us who are visually impaired.”
Peter believes the same principle holds for CP’s external relationships, “You never know who is on the other end of the keyboard—perhaps a customer or fellow employee with a vision impairment or a motor-skill deficiency.”
“In the design and implementation of the plans, we’ve been working hard to ensure the facility will be welcoming to all, and that special needs are considered.”
Peter, who is legally blind, says he enjoys working with CP because “working in such a large company has allowed me to excel in what I can do, and to focus on that, rather than on what I can’t.” The level of expertise that Peter dem-
Special consideration has been taken for lighting and air flow, wheelchairaccessible washrooms and hallways, automatic doors on the main entry and washrooms, and lower-height kitchen counters allowing for accessible sinks and microwaves. And, of course, the office furniture will be adjustable for individual needs and comfort.
In addition, Facilities has been working with CP’s Signals and Communications group, the City of Calgary, external safety suppliers, and the Canadian National Institute for the Blind (CNIB) to ensure that pedestrian crossings, roadways, and pathways around the Ogden entrances are accessible and safe for everyone to use. These considerations include ramped curbs with tactile walking surfaces at sidewalk intersections, and an audible beacon at the pedestrian rail crossing used as an orientation tool to determine the direction of the continuing pathway for the visually impaired. Employees are already looking forward to the new amenities that the new building will offer such as a gym, cafeteria, running track, outdoor seating areas, a reflection room, a private location for daily prayers or down time due to sensory impairments, and plenty of green space. There will also be a Mother’s Room for women to tend to pre- and postmaternity requirements. Outside the building, there will be both special needs and expectant mothers designated parking spots. CP’s new headquarters are approximately 12 kilometers southeast of downtown Calgary. The main building is two floors, comprising 214,000 square feet. Employees will begin relocating in August 2013. FALL 2013 | JOBPOSTINGS.CA
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SPENCER WEST
Water dollar disability
Spencer West’s inspiring treks raise funds for water in Africa. Words Kyle Reynolds // Photos Free the Children Feeling thirsty? Most often, that brief longing for hydration can be quenched by a quick trip to your kitchen tap, (unless you’re blessed enough to indulge in a Brita water filter). But what if access to drinking water wasn’t so easy? What if, instead of 15 steps, you had to walk 15 kilometres to a source of replenishment? Sadly, this is the case for millions of people in developing nations like Kenya, Ethiopia, and Tunisia, where sources of clean, drinkable water are scarce.
JOBPOSTINGS.CA | FALL 2013
MOUNT KILIMANJARO IS THE HIGHEST FREE-STANDING MOUNTAIN IN THE WORLD AT 5,895 METRES OR 19,341 FEET ABOVE SEA LEVEL. SPENCER CLIMBED MT. KILIMANJARO IN SEVEN DAYS, MOSTLY ON HIS HANDS. DAY 7 - 19,341 FEET -
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friends, family, and thousands of people across the world, he is now part of a movement that has successfully brought clean water access to 100,000 people. Since 2008, West has been “redefining possible” by taking on a series of seemingly impossible feats, including a gruelling climb up Tanzania’s Mount Kilimanjaro and, most recently, a 300-kilometre trek from Edmonton to Calgary. In the past five years, West has transcended his physical differences and proven that he is far from what many once referred to him as: “disabled.” It all started when his friend asked him to volunteer to build a school in Kenya for underprivileged children. Feeling discontent with his job and detached from material positions, West heavily contemplated the option. “When my friend invited me to go to Kenya, I was like, ‘That’s crazy. I can’t find happiness here in North America, I’m not gonna find it in Kenya,’” says West. Alas, he took a leap of faith and hasn’t looked back since. “That was my biggest fear: trusting my gut and going on my own,” he says. “Once I overcame that and stopped listening to what society said, and did what I thought was right for me, that’s when things started to get better.” It’s a sad reality, but it’s not entirely unsolvable. And according to Spencer West, nothing is impossible. West is a self-proclaimed “normal” guy who loves swimming, mountain climbing, and playing Mario Kart. He may argue that he is no different from you, but at a total height of two-foot-seven, many (mis)perceive him as otherwise. Born with sacral genesis, a genetic disorder that affected his lower spine and prevented him from uncrossing his legs, West underwent surgery to remove his lower limbs at the age of five. Initially, West felt like he would never become a contributing member of society. But today, with the support of
Upon sharing his story with a group of children in Kenya, a young girl expressed that she didn’t know something as traumatic as losing one’s legs “could happen to white people, too.” That one phrase inspired West to use his story to motivate people to not only look at challenges differently, but to “get involved with something they’re passionate about.” He found solace in joining forces with “Free the Children” and immediately began his journey to bring sustainable clean water projects to communities inflicted by severe drought. Today, West serves as an international leadership facilitator in Kenya, India, and at the Arizona-Mexico border. He also leads hundreds of volunteer students on the “Me
FALL 2013 | JOBPOSTINGS.CA
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INSPIRATION
SPENCER WEST
SPENCER WEST ON DAY SIX OF HIS SEVEN DAY CLIMB.
14 to We” foundation’s international trips. Last June, the world watched as West conquered Mount Kilimanjaro and raised more than $500,000 for his cause. He used his wheelchair for part of the walk, but tackled about 80 per cent of the trek on his hands. Despite the difficult terrain and his friends’ violent confrontation with altitude sickness, West admits it wasn’t his toughest challenge. “The challenge for We Walk 4Water was actually much harder than Kilimanjaro,” says West, referring to his most recent hike from Edmonton to Calgary. “We were doing about 30 kilometres a day, which is almost a full marathon, for 11 days. It was the same motion over and over again … so your joints were just destroyed by the end.” West decided to embark on the walk with his two closest friends after learning that during the dry season in Narok, Kenya, the average family must travel 15 kilometres to access clean water. Additionally, about 80 per cent of serious illnesses in developing countries are connected to poor water and sanitation. Determined to find a solution and raise awareness, West walked in solidarity with those suffering in developing nations and was joined by the likes of singer/ songwriter Nelly Furtado, Survivor winner Ethan Zahn, and actor J.R Martinez. According to West, he was overwhelmed by the public response, and was particularly optimistic about the support JOBPOSTINGS.CA | FALL 2013
he continues to receive from young children. “Those are the kids that inspire me: that work so hard to overcome bullying, that work so hard to raise money to build a school, that work so hard to run the campaigns,” says West. “And that’s why I continue to do what I do, because they are the ones that are effecting the biggest change.” West’s best friend, Alex Meers, joined him on both excursions and attributes West’s success to how he makes people feel when they are around him. “He is just a genuine person who pushes his own limits and encourages others to do the same in their own way,” says Meers. “It’s rare to come across meaningful friendships with people who encourage you to bring out your best.” He and West both agree that it doesn’t require losing your legs or having a traumatic experience to become a motivational speaker or to make a positive impact on the world. “I think it’s really important to look at something that you’re passionate about and [be] able to talk about that correctly,” says West. “With any journey, you have to take some risks and step outside of your comfort zone in order to move, in order to grow. At the end of the day, regardless of whatever I’m doing, I just want to know that I did everything that I could to make the world a better place.”
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JOSH VANDER VIES
INSPIRATION
Reaching your full potential with a disability Born with limited use of his arms and legs, Canadian Paralympian Josh Vander Vies turns can’ts into cans. When you try to define the word “disability,” it’s often associated with an inability to perform certain everyday tasks that most people are able to do. But for 28-year-old Canadian Paralympian Josh Vander Vies, that assumption is far from the truth. Born without arms and legs, Vander Vies is a two-time Paralympian and boccia player for the Canadian National Team, and models himself to be an inspirational figure for those with and without disabilities. At a young age, doctors doubted his ability to cope without the use of his limbs, but he has since proven the critics wrong. Vander Vies is a UBC graduate, has competed and traveled around the world, and lives a morethan-normal life with his partner and family. He discusses the importance of striving to live a normal life despite having a disability in his blog Disability is Not Negative, which was posted on his website. “It’s up to adults with disabilities to build positive attitudes about themselves and other people with disabilities by doing ordinary things in creative and amazing ways,” writes Vander Vies in his post. And through his athleticism, and willingness to share his story to audiences around the world, he has proven to be that spokesperson and role model. “Giving up is the easy way out,” he writes. “Not giving up, risking your ego, and working hard at accomplishing a tough goal is being alive. Success will follow.” It’s inevitable that there are many
IMAGE SOURCE: JD BOOTH
questions that follow a disability at birth or later in life. People often wonder how this affects everything from their personal life to their potential future careers. However, Vander Vies stresses that a disability isn’t what stops you. “Other things do a great job of this though: negative attitudes, giving up, not taking chances, or not working hard,” he says.” Those born with disabilities oftentimes are more sheltered and protected by their parents, Vander Vies writes. “This can be especially damaging. Kids without disabilities are allowed to take chances and do risky things—don’t forget to give that opportunity to your child with a disability as well.” He discusses the importance of parents fostering positive attitudes for their children with disabilities. “It is up to parents to support their child when the going gets tough and they want to throw in the towel,” he writes. Often enough, failure hurts, but any failure can be turned into a learning experience. Without the support from his family, courage, and determination to be bigger than his disability, Vander Vies would not be where he is today: training and competing internationally, and speaking to audiences of thousands. “Kids with disabilities need to learn the value of hard work because they will be working hard for the rest of their lives ... There are many negative things in the world. Disability is not one of them.” | Megan Santos
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CONTINUING EDUCATION business.humber.ca/ce
CONTINUE YOUR EDUCATION IN BUSINESS; EVENINGS, WEEKENDS, ON-CAMPUS,ONLINE, ON YOUR TIME.
RARE ILLNESSES
Living with a rare ILLNESS
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They may be classified as rare, but today rare diseases affect over 300 million people worldwide.
Words Megan Santos // Illustrations Pay404 Media
Today, there are roughly 7,000 different types of rare diseases affecting approximately 2.8 million Canadians. “Some of the diseases certainly may cause you to maybe be disabled, some diseases may affect your neurological cognitive function,” says Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders (CORD). The single thing that all kinds of rare disorders have in common, is that they’re very hard to diagnose. For some, it can take years to identify. “The doctor may or may not agree there’s something wrong, nobody will know what it is, and it many take many years in chasing down specialist after specialist, and test after test,” she says. CORD is an umbrella organization for rare disease groups across Canada and works alongside governments, industries, clinicians, and researchers to develop treatments and services to for all rare diseases nationwide. Currently, CORD is working on developing an orphan drug policy in Canada, says Wong-Rieger, “which would increase access
to drugs for rare diseases for Canadians and also improve the access to these drugs ... so that patients can actually have these drugs covered under the drug plans because most of them are quite necessary.” An orphan drug refers to the medication used to treat rare diseases. “They’re called orphan drugs because in the past, companies and researchers who were developing these drugs ... would often abandon them because it cost so much to develop the drug,” she says. There is no direct cure for existing rare diseases and, according to WongRieger, the medication that is prescribed simply treats symptoms linked to the disorder (headaches, inflammation, etc.) However, there is no actual treatment for the disease itself, thus explaining the significance of a drug policy. Wong-Rieger describes today as the most exciting time for orphan drug research and development. “Certainly, 30–35 years ago nobody paid attention to them,” she says, “but now, especially with the orphan drug policies that have FALL 2013 | JOBPOSTINGS.CA
RARE ILLNESSES
taken place in the US, Europe, and coming into Canada, there’s a renewed interest in financial support for research and development on these rare diseases.” Additionally, the increasing interest in genetics today is a benefit since 80 per cent of rare disorders are genetic. “Now that we’ve mapped the human genome,” she says, “we know how to identify many cases genetic defects and there’s a huge amount of interest in it and lots of money is going into it.” Along with cancer research, development of rare disease treatment is considered the fastest growing interest in terms of healthcare. “It’s an amazing time for people with rare diseases because,
like I said, up to a few years ago nobody cared and no one did anything,” says Wong-Rieger. “Twenty-five years ago, people thought of rare diseases as people with two heads or something and they had no idea what we’re talking about.” Since the public, governments, and researchers have become better aware of the existence of rare diseases, there has been an even bigger push to find cures. We take a look into the lives of three women, living and working with three different rare diseases. They take us through their diagnosis process, and share their fears on how they believed this would ultimately affect their careers and personal lives.
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Carrie Gallagher
account manager, health and wellness trainer
granulomatosis with polyangiitis (GPA) ONE IN 25,0000 PEOPLE
It took four years for Carrie Gallagher to finally understand that she suffered from more than just a sinus infection. Gallagher, an account manager and health and wellness trainer for Balancing Life’s Issues, suffers from a rare disease called granulomatosis with polyangiitis, (GPA for short). Affecting roughly one in 25,000 Canadians, GPA is an autoimmune disease that damages the small blood vessels of the kidneys, lungs, sinuses, and other organs. Gallagher says that as an active individual who exercised regularly and took kickboxing classes, she knew something was wrong when she began to feel ill and experienced dizziness and rashes. “I just never felt right; this went on for about three or four years,” she says. “I was constantly feeling like I had a sinus infection and just a terrible cold because I’d be stuffed up all the time out of the blue and then it would go away the next day.” JOBPOSTINGS.CA | FALL 2013
Looking for answers from specialists, Gallagher says that, for years, no doctor had any idea what it might be. It wasn’t until an evening in early January 2012, when Gallagher began to cough up blood, that a diagnosis arrived. “It was really blood in my lungs from blood vessels bursting from the disease,” she says, after doctors had initially thought she suffered from pneumonia. After rushing to the emergency room, she was finally diagnosed with GPA within 24 hours. For the last year and a half of living with GPA, Gallagher says she always promised herself to be positive. “I think, of course, it’s very scary, especially at a young age and especially in terms of a career,” she says. “I think the advice that I would give to people is when something happens (like illness or death), just look at the positive of it.” Gallagher attributes her strong support system for helping her deal with GPA.
“At the time, I was dating my then-boyfriend … so he knew me when I was normal, healthy, and graduating from college, then the stage of not feeling good all the time, and of course … when I was diagnosed.”
sible in any way to help myself from flaring up again.” To accomplish that, she maintains a gluten-free diet to avoid any inflammation and makes sure she gets eight hours of sleep every night.
Gallagher is proud to say she is medicine free today, after months of taking Rituxan and a high-dosage of Prednisone, (a type of steroid). Frequent visits to her doctor for blood work and specialist appointments have kept her away from needing the medication today.
“I know it sounds silly but it’s really important to do these things because, when you’re living with something like this, the better the chances you are living without another flare.”
“The best way to say it is I live with it, I do things myself to maintain it,” says Gallagher. “So I try to maintain things I can control and my lifestyle just to be as healthy as pos-
Since her diagnosis, Gallagher has also began doing research to inform others of her condition and to stay positive in the face of adversity. “I want to learn everything I can to help others,” she says, “and use that in my career.”
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Becky Dennis
author of Brain Wreck, chief marketing officer
encephalitis
5–10 per 100,000 individuals
Becky Dennis believes humour is the best remedy in coping with her rare disease. Dennis, an author and marketing guru, has been living with encephalitis (which, in layman’s terms, is the swelling of the brain), for the last five and a half years. Affecting up to 10 per 100,000 people, encephalitis can be acquired in many ways including car accident and bacteria. She contracted the disease through a mosquito bite; however, the diagnosis process was far from simple. “It took them two and a half years, which was scary from a job perspective because I was constantly at the doctor’s appointments,” she says. Initially, Dennis’s doctor had believed she suffered from a stroke or may have had multiple sclerosis. But finally, after meeting with a doctor in Boston, Dennis was diagnosed with encephalitis. The onset experience of the encephalitis had been a scary time for Dennis. “I was very afraid; the first six months I was very ill and
was sleeping probably 16 to 18 hours a day,” she says. “So I would have to set an alarm for the meetings that I absolutely couldn’t miss.” Along with the sleepiness, Dennis says she felt confusion and short-term memory loss. She had a difficult time with everyday tasks, like fixing her hair or remembering how to simultaneously walk and talk. “The onset is the most severe part of the illness itself; then if you start to recover different things start to come up,” she says. “I look at my encephalitis as a blessing and a curse because a lot of people have recovered quite well, but the curse is a lot of my symptoms are invisible to most people, so they don’t see how hard I have to work.” As a marketing officer, Dennis’ job description relies heavily on meetings and presentations. “People ask me a multi-part question, so I have a pen handy to write down multiple parts of the question,” she says. “It’s sometimes a scary experience because when you’re FALL 2013 | JOBPOSTINGS.CA
RARE ILLNESSES
doing presentations and somebody asks you something, in my head I’m like ‘could you please not do this to me?’” Despite the symptoms¬—the confusion and loss for words at times—Dennis strives to be a role model for others. “If there’s anything I need to offer right now, it’s being that
voice because I am more capable than a lot of other people who have survived this.” She says she’s always been the type of person to laugh even at the toughest times. “I guess I’m thankful that my sense of humour wasn’t compromised because that’s what really helped me get through.”
Soania Mathur family physician
young onset Parkinson’s disease (under 40 years old) Affects 5 to 10 per cent of those diagnosed
22 “Mine started off as a tremor in my right pinky finger,” says Soania Mathur. For the last 15 years, Mathur has been living with Parkinson’s disease, and for 12 of those years she has practiced as a family doctor, a career in which she continued to pursue at the time of her diagnosis. Parkinson’s disease affects about one in every 100 people over the age of 60, so it occurs more often than a rare disease. What makes Mathur’s diagnosis unique is that she discovered she was living with Parkinson’s at 27 years old. Affecting only five to 10 per cent of those diagnosed, Mathur has what is referred to as young onset Parkinson’s disease, which includes anyone with the disease under the age of 40. At 27, just as Mathur wrapped up her studies in family practice and readied herself to pursue a career in the field, she was diagnosed with Parkinson’s disease. “[The tremor] was just intermittent and very occasional, so of course, being a doctor I ignored it until it spread to the rest of my hand and ultimately my arm,” she says. “By the time it became more persistent in my right hand, I went for an evaluation from a colleague of mine and he diagnosed young onset Parkinson’s disease at my clinical exam.” Unsure of how this would affect her career, Mathur says she went into denial. “It was very difficult, but I ended up practicing for 12 years JOBPOSTINGS.CA | FALL 2013
with the Parkinson’s. For the first two years it was manageable,” she says. “It was difficult to help my patients through their issues when I was dealing with trying to hide my own.” At the 11-year mark of her career and life with Parkinson’s, Mathur says she decided to temporarily put her practice on hold. “I went on short-term disability for about three or four months just because I was burning out.” She decided to work part-time in attempts to make her return back into the field, but her worsening symptoms and side effects to the medication, (which can sometimes be worse than the symptoms themselves), kept her from practicing. “My husband said ‘you’re just going to drive yourself into the ground,’ essentially minimizing the productive life I’ll have after,” says Mathur. “My neurologist basically put it this way to me: ‘do you want to walk out of the office or do you want to crawl out?’ I said I choose to walk out and it just became unmanageable to work so that’s why I left.” Although Mathur falls in that five to 10 per cent, she continues to strive to live a positive life for herself and her family. “For my children, I think it’s important for them to see a positive role model … to understand that they will face obstacles in their lives,” she says. “Ultimately how they approach those obstacles will define them as human beings and strong women that I hope they will be.”
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