Volunteer Vibes Volume 11 Issue 3

CILT’s Volunteer Vibes Volume 11 Issue 3 Fall 2011 Volunteer Program Update Influenza (Seasonal Flu) and the Influenza Vaccine We’ve had a few changes since our last newsletter. We have had to say goodbye ©www.toronto.ca/health/cdc/factsheets/in to a volunteer, Farah Fatima, who had to fluenza_factsheet.htm leave her volunteer position temporarily, but will hopefully return soon. Crystal Bicknell, a past volunteer, will be What is influenza? returning in the New Year from finishing her post-secondary education. Influenza (the flu), is a virus that comes We have also had two student around each fall (making it seasonal) that volunteers in the past six months who causes fever, chills, muscle aches, volunteered with us to receive their 40 headache, runny nose, cough, weakness hour community service requirement in and tiredness. These symptoms usually secondary school. We would like to thank last from two to seven days. The cough our two students, Alexandra Monteiro and weakness may last for up to six and Florian Birkenhake, who helped us weeks. Elderly persons may have the flu with so many mailings and data entry. We without a fever, and children may have wish them the best in their years of high stomach symptoms such as nausea, school. vomiting and diarrhea.

CILT Volunteer Holiday Hours Who is at risk? Everyone is at risk of getting the flu. Although most people will not get The holiday hours for volunteers begin seriously ill, some people may develop on Monday December 19, 2011 to flu-related complications such as lung Tuesday January 3, 2012. We wish you infections (pneumonia), ear infections, all a joyous and happy dehydration (loss of body fluids) and, in holiday season. See you all rare cases, death. People most at risk in the New Year! include: children less than two years of age; people 65 years of age and older; residents of long-term care homes or 2 CILT's Volunteer Vibes chronic-care facilities; people with What is the influenza vaccine and what chronic health conditions such as does it do? diabetes, cancer, lung, heart or kidney disease; pregnant women; aboriginal Each year, the influenza vaccine peoples; and people who are obese. (flu shot) protects against the three types of influenza viruses that are most likely to How is the flu spread? cause the flu that year. The flu shot cannot give you the flu because it does You can get the flu if you are not contain live influenza viruses. The coughed or sneezed on by someone who body needs two weeks to build up has the flu. Touching hands, surfaces or protection against influenza after the shot objects that someone with the flu has is given. Protection lasts four months or touched and then touching your eyes, longer. The flu shot does not protect nose or mouth can all lead to getting the against colds or other illnesses with flu- flu. like symptoms.

What can I do to prevent the spread of When should I get the flu shot? the flu? Get the flu shot each fall. Also follow these simple steps to protect As the flu shot takes two weeks to yourself: provide full protection, the earlier you get the vaccine the better. The flu shot is • wash your hands available starting in October. frequently • cover your cough and I got a flu shot last year. Do I have to sneeze with something other than your get it again this year? hands • stay home when you are sick Yes. You should get the flu shot • drink plenty of fluids each fall. The viruses that cause the flu • be physically active change frequently. Protection from last • avoid touching your eyes, nose and year's vaccine has likely worn off. You mouth with unclean hands need to get another shot to be protected • avoid close contact with persons who this year. are sick with the flu • stay well rested Who should get the influenza vaccine? • eat nutritious food Everyone who is six months of age or older should get the flu shot, unless there is a medical reason that prevents you from getting the vaccine. If you are at

©Centre for Independent Living in Toronto (CILT) Inc. Fall 2011 3 CILT's Volunteer Vibes high risk for flu-related complications or In very rare instances (about one in live or work with people who are at high one million doses of vaccine), the flu shot risk (e.g. healthcare workers and essential has been associated with a temporary community services staff), getting the flu neurological condition causing muscle shot is particularly important. paralysis called Guillain-Barré Syndrome (GBS). Seek medical attention if you How many doses of the believe that you, or someone in your care, vaccine do I need? has had a reaction to the shot.

Adults should receive Who should not get the flu shot? one shot each year. Children between six months and eight years of age who never • People with a severe allergy to eggs or had a seasonal flu shot should receive two any component of the vaccine (e.g., doses the first year they get vaccinated. neomycin, thimerosal) or who had a These two doses should be received at serious allergic reaction to a least one month apart, and they need one previous dose of influenza shot each year after that. vaccine. • Babies younger than six months of What are the side effects of the flu age. shot? • Any person who has had Guillain- Barré Syndrome (GBS) or who has an The flu shot is very safe. The most active neurological disorder should common side effects are soreness or speak with a doctor before getting redness where the shot is given, fever, vaccinated. headache or tiredness and achiness. Side • Most people who have had oculo- effects usually occur one to two days after respiratory syndrome (ORS) can be vaccination. safely re-immunized with the flu shot but should discuss this with a doctor Severe side effects and allergic first. reactions are rare. In past years, a small • Anyone who is ill with a fever should number of people who received the flu delay receiving the flu shot until they shot developed oculo-respiratory feel better. syndrome (ORS). ORS can cause red eyes, cough, chest tightness, difficulty What should I do if I get the flu? breathing, hoarseness, sore throat and swelling of the face. Symptoms occur Get plenty of rest and drink lots of within 24 hours and resolve within 48 fluids. Wash your hands often. Stay at hours. home and away from children, the elderly and anyone with a serious illness until

©Centre for Independent Living in Toronto (CILT) Inc. Fall 2011 4 CILT's Volunteer Vibes you are feeling better. Ask your doctor organization to stage subsequent events about medication to reduce aches, pain and allocate funds was created. and fever. Also ask about anti-influenza That organization was the drugs that may ease your discomfort and Canadian Foundation for Physically shorten the length of your illness. Disabled Persons (CFPDP), set up in Children should not be given medication 1987 by the The Rotary Club of Toronto - that contains acetylsalicylic acid (e.g. Don Valley with Vim Kochhar as aspirin) because it can cause Reye's Founding Chair. Its goal was to assist Syndrome, a sickness that can lead to individuals with physical challenges to brain and liver damage. live fuller lives and raise awareness of their achievements and contributions to Where can I find more information? society. Since then, CFPDP has initiated dozens of important Projects & Events, Talk to your doctor or call Toronto Public raising over $21 million. Health at 416-338-7600.

Today, the CFPDP continues to The Canadian Foundation initiate projects that help thousands of physically challenged people across the for Physically Disabled country. "We need to concentrate on Persons (CFPDP): Changing things that really matter like character, the Way Canadians Think About compassion and community," says Kochhar. "Above all, we need to build Disability awareness and keep promoting the © www.cfpdp.com/about/default.html message of inclusion."

n 1984, Rotarian Vim Kochhar and The Every I year, CILT Rotary Club of Toronto - Don Valley supports members were asked to help raise funds CFPDP by for the Cheshire Homes Foundation to purchasing a help build housing for the deaf-blind. The table at the Annual Inductee Luncheon, eventual result was the First Annual Great and asking our volunteers to join us. This Valentine Gala which took place in year, five more amazing individuals were February, 1985 in Toronto and raised inducted into the Hall of Fame: Archie $230,000. It was supposed to be a one- Allison, Benoît Huot, Brian and Robin time event, but within two years became McKeever, and Celia Southward. so successful that a separate charitable

©Centre for Independent Living in Toronto (CILT) Inc. Fall 2011 5 CILT's Volunteer Vibes

Archie Allison(Builder): ability of people here and their tremendous desire to get involved and be Archie Allison just active. might be the most popular guy in Toronto’s diverse Variety Village offered them and far-flung disability opportunities that were hard to find in the community. Over the larger community.” Allison specialized in course of almost 30 years accommodation, making participation in as a stalwart in the ranks of the city’s Variety Village programs available to world-renowned Variety Village, everyone who wanted to get involved. An Allison’s unfailing thoughtfulness and early and ardent proponent of the concept cheerful dedication have touched the lives of reverse integration, he worked from the of literally thousands of people, young premise that you make provisions for and old, who live with disability. And, disability first, then integrate the rest of like the proverbial pebble in the pond, the the community. “We all have varied skills ripple effect of Allison’s attentions and abilities and experience. When you reaches far beyond the confines of ‘The provide a venue that encompasses and Village’, giving heart and hope to parents understands these differences it creates and families, and spreading his message access for everybody,” says Allison. of inclusion and accommodation to thousands more students, educators and Today, as Variety Village’s public spirited organizations across the Director of Access and Awareness, province. Archie Allison spends a lot of his time sharing this message of access and But this is the thing about Archie inclusion with the wider world. He also Allison, it all begins in the magic spark of teaches courses in adapted sports and personal connection. Archie Allison cares disability issues at the University of about people, and people respond. Toronto and local community colleges, Beginning his career in 1984 as a kind of reaching out to the next generation of all-around sports and recreation educators and sports and recreation instructor, coach, life-skills counselor and professionals. But don’t worry, he’s still mentor, Allison’s first order of business at an active and much loved presence Variety Village was helping people, many around ‘The Village’. In the words of one of whom encounter a lot of barriers in the of his many devoted fans, “Mostly what I wider community, find new and like about Archie is his personality. rewarding ways to feel active, involved Archie seems to always be smiling and and included. “Inclusion is so important,” happy… It seems he always has time for says Allison. “When I first came to us even though we know how incredibly Variety Village what I noticed was the busy he is and how much he accomplishes

©Centre for Independent Living in Toronto (CILT) Inc. Fall 2011 6 CILT's Volunteer Vibes every day. When Archie walks down the it was the same story. He just couldn’t run halls of Variety Village, members of the fast enough. “Team sports were very village gravitate toward him. By the time difficult for me,” says Huot. “The fact he reaches the front doors he has gathered that I wasn’t as good as the other players a small crowd. He’s a bit like the Pied was hard. It was difficult to integrate Piper of Hamelin.” myself in team sports – I didn’t want the other kids to laugh at me.” Benoît Huot (Athlete): It was in the swimming pool where Multiple world record Huot finally discovered an outlet for his setting swimmer and three- frustrated athletic ambitions. Water time Paralympian, Benoît proved to be the great equalizer. “In the Huot was born with a club pool I felt free, like a fish. I just felt better foot. When he was seven days in the water,” remembers Huot. He joined old, he underwent corrective surgery and the local swim club and, with the support spent the next year-and-a half in a series and encouragement of his coach and of casts designed to realign his leg and teammates, learned quickly. “After a foot. It was another three years before couple of months swimming I really Huot began to walk and he wore a special started to get better and I realized I had orthopaedic shoe until the age of six. Like found my passion,” says Huot. other kids his age, he also desperately wanted to play sports. “I was a huge For two years the young swimmer hockey fan and I told my mother I wanted competed with able-bodied athletes, to learn to play and be a goalie like travelling twice to the Quebec Games and Patrick Roy and play for the Montreal winning a silver medal in 1997. Then one Canadiens,” remembers the Longueuil night, at the age of 13, he was watching Quebec native with a laugh. His mother the Canada Games on television and worried he was setting himself up for caught an interview with Paralympic disappointment. Huot’s right leg has a swimmer Philippe Gagnon, who was also permanently underdeveloped calf and the born with a club foot. It was a revelation, foot is smaller with limited ankle recalls Huot, realizing for the first time flexibility. that his disability had a Paralympic classification. Despite his mother’s fears he headed off to the rink and gave it his best The following spring he attended shot but the dream of hockey immortality the national trials and made the was short-lived. Huot realized he was Paralympic team. Five months later, at the never going to learn to skate like the other International Paralympic Committee kids. The next year he tried baseball and World Championships, the 14-year-old

©Centre for Independent Living in Toronto (CILT) Inc. Fall 2011 7 CILT's Volunteer Vibes made his stunning international debut, was a devastating personal blow for the taking two gold and four silver medals. aspiring Olympian. “It's emotional, for Recognized today as one of the most sure,” a tearful McKeever admitted the decorated athletes in Paralympic sport, next day to a throng of reporters. “It was Benoît Huot has won 16 medals in three not something I ever wanted to hear. I'm successive trips to the Paralympic very, very crushed by the decision, but I Summer Games: eight gold, four silver understand the decision. Our boys are and four bronze. racing so fast. They deserve everything they've got. I stand behind them 100 Brian McKeever and Robin McKeever percent.” It was a forthright and gracious (Athletes): performance from an athlete who had just suffered a brutal leveling. However, if When seven-time McKeever was still labouring under the Paralympic gold effects of his Olympic disappointment medalist Brian when he returned to Whistler three weeks McKeever earned a spot later for the Paralympics, he found a way on Canada’s Olympic to put it all behind him. cross-country ski team in 2010, the news Brian, and Robin who served as his quickly became one of the great feel-good sighted guide in Paralympic competition, stories of the Vancouver-Whistler Winter would earn three gold medals in Whistler, Games. McKeever, who is legally blind turning in their best Winter Games in a with only 10 percent vision, was the first career that has garnered nine Paralympic Winter Paralympian in history to make medals. “Everybody has something they his nation’s Olympic squad and the have to overcome before they get to the amazing achievement captured the starting line,” says Brian. “The second imaginations of sports fans around the you take the starting line and you don’t world. Since 2006, McKeever had been have all the tools you know you need to totally focused on his dream of skiing in win, then you’re giving away a big the Olympics, like his brother Robin in advantage.” Nagano in 1998. Facing down adversity is nothing Then three days before his new for McKeever. A promising young anticipated start in the Olympic 50k, the cross-country skier who represented Canadian coaches informed McKeever he Canada at the 1997 Junior World was being sidelined in favour of the Championships, McKeever was team’s top four starters. If the diagnosed a year later with Stargardt’s announcement was disappointing news disease, an inherited condition he shares for an awful lot of excited sports fans, it with his father that causes the loss of

©Centre for Independent Living in Toronto (CILT) Inc. Fall 2011 8 CILT's Volunteer Vibes central vision. Within two years he was so-called special populations was built legally blind and joined Canada’s para- incrementally from the ground up by nordic program. Robin, an Olympian and driven individuals with the courage and 11-time national champion, retired from clarity of vision to press the case for competition to serve as Brian’s guide. change. People like Celia Southward. “Back in the day when people just didn’t Focused, as always, on the get it, I’d tell them, ‘Look, is it sport in a challenges ahead, Brian McKeever’s big wheelchair? Or is it sport and the goal is qualifying for the 2014 Winter wheelchair is just another piece of Olympics in Sochi. “Hopefully this time equipment?’ And they’d look at me and I’ll get a chance to compete. I’ll just have say, ‘What?’ And I’d try to explain, I’m to try harder, make sure I’m in better talking about SPORT,” says Southward, shape and maybe I can eliminate biting into SPORT with the kind of whatever doubts the coaches have about emphasis that leaves no doubt in the my ability to compete.” listener’s mind they want to pay close attention to what she has to say. Celia Southward (Achiever): Advocacy, of course, is only half the battle. A one-woman powerhouse behind the Southward also walks the walk. A growth and delivery of perennially unflagging volunteer, it’s hard adapted sports and to tell where Southward’s job description community accessibility in leaves off and her personal contributions Windsor and across the begin. province of Ontario and beyond, sports and recreation administrator Celia Over the course of 35 years of Southward has played a profoundly public service her unstinting ministrations influential role in reshaping the range of have made their mark on so many diverse opportunities available to Canadians who areas of community life it is impossible to live with disability. When Southward offer anything more than a glancing joined the City of Windsor’s sports and overview. If you need a ramp for recreation department in 1976, wheelchair bowling in Windsor, you call consideration for adapted sports and Celia Southward. She also founded the recreational opportunities played virtually league that uses the ramps. She planned no part in the civic business of Canadian and implemented the City’s first day cities. camps for kids with disabilities and later expanded the program to include adults. The whole idea of civic She made it her mission to integrate responsibility for accommodating people with special needs in all City

©Centre for Independent Living in Toronto (CILT) Inc. Fall 2011 9 CILT's Volunteer Vibes programs and in the workplace. She Youth Canada: founded and ran Seniors Fun Field Day, a corporate challenge cup between the local Volunteer Work nursing homes, retirement homes and ©http://www.youth.gc.ca/eng/topics/jobs/ chronic care wards. She is the founder of volunteer.shtml the Ontario Seniors Games and past president of the Ontario Cerebral Palsy Sports Association and the Ontario ork without pay? Yes! Volunteering Wheelchair Sports Association. W may be one of the most valuable

experiences of your life. It's a double win: A certified coach in hockey, track your community or cause benefits from and field, and swimming, she has your work and you benefit from your founded, managed and/or coached experiences. How? Read on… numerous sports organizations and established rigorous training and certification standards for all coaches and The Basics: Why volunteer? officials working with athletes in adapted sport. Asked to identify one • Volunteering is a great way to accomplishment of which she is get work experience! You learn new especially proud, Southward singles out skills by trying new jobs. the Windsor Classic Indoor Games, which • You might find something you'd like she founded in 1982. Bringing together to do for a living, or young athletes from around the world for four days of competition in all five discover what you Paralympic disability groups, the annual would not want to do. Games have become the largest indoor • Better yet, you showcase for adapted sport in North can meet people who can give you America. guidance and possibly help you to find a paid job later on. • Some volunteer opportunities involve travel across Canada or to other countries.

• Employers will be impressed that you took the initiative to learn new things.

• You can learn how a charitable organization works.

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• Best of all, you will be taking action to • Provide counselling and support promote what you think is important • Run errands and do deliveries and probably be helping someone • Gather and analyze data else along the way. • Raise awareness of important issues • Be the change that you seek! • Do clean-up and repairs in the Who needs volunteers? community • Hospitals • Build houses or playground equipment • Charities • Care for animals • Clubs • Stage concerts, plays and other • Overseas development organizations cultural events • Music and arts festivals • Protect the environment • Sporting leagues and events • Plant trees • Children's camps • Help-out with a political campaign • Libraries Where can you find volunteer • Environmental organizations opportunities? • Crisis lines and peer counseling organizations • Visit your community's volunteer bureau, community information • Human rights organizations centre, or town hall • Religious organizations • Call a service club • Political campaigns • Visit a hospital • Government agencies (local, • Ask family, friends and neighbours provincial, federal) what they recommend What are some of the things a • Join an organization whose activities volunteer can do? you support • Coach a Team • Consult the web sites of major volunteer organizations - some can be • Read to Children found through the links listed below: • Raise money for charity (fight diseases, reduce poverty, help the sick and Helpful Web Sites: injured, etc.) • Find volunteer opportunities at a • Care for the Elderly volunteer centre in your area by • Feed the Hungry

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visiting the Volunteer Canada Web concept,” enthuses Mohrea Halingten, site. http://volunteer.ca/home manager of Evergreen Printing Services • Browse the links at the Canadian Inc. in Langley, B.C. “[There are] no Volunteer Directory at geographic limitations, I can do the work http://www.canadian- at home, and I decide when I can do it.” universities.net/Volunteer/index.html The only downside, she says, is the to find volunteer opportunities from lack of face-to-face contact, but that across Canada hasn’t stopped her from volunteering with • Travel and do volunteer work in three Macdonald Youth Services, a Winnipeg- communities in different regions of based treatment and support agency for Canada by participating in children and families. She provides the the Katimavik program organization with print-ready graphic http://www.katimavik.org/ files for their brochures or annual reports, which, depending on the project, can consume eight hours a week to two or Get Involved! Become a three eight-hour days. Virtual Volunteer By: Heather Who is volunteering? Camlot; http://www.microsoft.com/canada/home/l According to Statistics Canada’s ife-and-style/articles/get-involved- 2004 Canada Survey of Giving, become-a-virtual-volunteer.aspx Volunteering and Participating, Canadians donated a total of 2 billion hours a year (equal to about 1 million Sometimes finding the full-time jobs) to volunteering. time to volunteer is hard. “Virtual volunteering is only now gaining Perhaps you don’t have popularity, so there may not be too many one free moment between volunteer opportunities that are holding down a 40-hour a week job and specifically listed as virtual,” says Justin caring for the kids. Or maybe there isn’t Ho, volunteer opportunities exchange an organization in your neighbourhood administrator for Volunteer Canada. “So that has much meaning to you. If you when you are browsing postings online or want to volunteer, there is a way. at a volunteer centre, read the descriptions Why volunteer? carefully, and if an opportunity that interests you sounds like it could be done Virtual volunteering allows you to virtually, then you should approach the donate your time and talent through the organization and suggest it to them.” convenience of your computer and Internet connection. “I think it’s a great

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While you may have the right written for financial contributions but can technology and software, you also have to be applied to volunteering. have the right attitude. “There’s actual Macdonald Youth Services work involved,” stresses Randy Tyler, virtual volunteer program developer for Macdonald Youth Services. “Virtual Although the organization’s volunteers have to be able to work alone postings are elsewhere (try Charity comfortably, be motivated, be committed Village and Volunteer Canada), the site and be able to provide continual reports provides a ton of information about where on what they’re doing.” Ho adds that virtual volunteering is going and how it is good time-management skills, excellent bridging the gap between wanting to written communication skills and volunteer and actually doing it. possibly a workspace with little VolunteerMatch distraction are also an asset.

Once you have some time to An American site, VolunteerMatch commit and the desire to volunteer, you lists thousands of virtual opportunities can check various postings to find the divided by interest, such as environment position best suited to your skills. and crisis support. Volunteer Canada

Volunteer Canada offers CILT News information about onsite and online volunteering across the country. You can also browse available opportunities. Gateways Gets Published The Virtual Volunteering Guidebook Yet Again

Ho considers this American guide the best resource on virtual volunteering. he Gateways Team would like to It has information and tips for T organizations and volunteers. announce that the Gateways Project has been published in The Journal of Cancer Charity Village Education, Volume 26, Number 4, entitled

‘Access to Cancer Screening for Women The site has postings for volunteer with Mobility Disabilities’. and paid positions across the country and around the world. There is also a section This scholarly article outlines the on how to choose a charity, which is

©Centre for Independent Living in Toronto (CILT) Inc. Fall 2011 13 CILT's Volunteer Vibes focus group participants identifying the Toronto: multiple and interacting institutional • Centre for Independent Living in barriers to cancer screening. Their Toronto discussions highlighted the complex work • Canadian Cancer Society of: • Mount Sinai Hospital (1) arranging and attending health- • Ismaili Cancer related appointments, Support Network • Springtide Resources (2) confronting normative assumptions • Faculty of Nursing, about women's bodies, and University of Toronto

(3) securing reliable health care and information. Gateways I Project (2006-2008):

Purpose: These issues interact to shape how women with disabilities access and To explore the breast, cervical and experience cancer screening. The article colorectal cancer screening experiences explores implications for redesign of and care needs of women with mobility cancer screening services and education disabilities in Toronto. of healthcare providers, providing specific recommendations suggested by Methodology: Gateways participants and the findings. • Initially conceived as qualitative descriptive research Gateways: A Recap and • Conducted as a community-based, participatory action research project Update By: The Gateways Team (PAR)

Participatory Action Research (PAR): In 2006, the Centre for Independent • Living in Toronto (CILT) Inc. recognized PAR involves all relevant parties examining together current action the need to explore and understand the (which they experience as cancer screening experiences of women problematic) in order to change and with mobility disabilities. Partnerships improve it. were then developed with disability • PAR is not just research which is activists, university-based health hoped that will be followed by researchers and health professionals in action. It is action which is

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researched, changed and re- based research implementation grant from researched, within the research the Canadian Breast Cancer Foundation process by participants. for a new project: • PAR aims to be active co-research,

by and for those to be helped. • PAR tries to be a genuinely Improving the Breast Cancer Experience democratic or non-coercive process for Women with Mobility Disabilities: An whereby those to be helped, Educational Intervention with determine the purposes and Healthcare Providers (Gateways II) outcomes of their own inquiry

(much like the Independent Living philosophy). [Wadsworth, 1998] Gateways II Team: • Mount Sinai - Principal Gateways I Project Results: Investigator • Mount Sinai - Project Manager • Focus groups were conducted by • Mount Sinai - Research Associate peer researchers with 24 women • Mount Sinai - Curriculum with mobility disabilities from Developer diverse communities in the Greater • Centre for Independent Living in Toronto Area (GTA). Toronto • Ismaili Cancer Support Network • Key findings: women with • University of Toronto, Faculty of disabilities face architectural, Nursing systemic and attitudinal barriers to • Springtide Resources effective screening. • Ontario Breast Screening Program

• Recommendation: disability Project Purpose: training for healthcare professionals and clinical staff • Address barriers to accessing breast who work in cancer screening on cancer screening for women living appropriate and clear with disabilities. communication, compassionate • Improving the mammography behaviour and best practices. experience for women living with disabilities. Our Current Initiative: Gateways II • Develop, implement, evaluate an Project (2009-2012) innovative, evidence-based education strategy for healthcare In 2009, the Gateways Team professionals to increase their applied for and received a community-

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competencies when working with April and June 2010. Data was then women with mobility disabilities. analyzed from each of the focus groups

Representing Disability in Health Provider Education: Focus Group Questions asked: Overcoming Ethical Challenges • Icebreaker question: When I say the word ‘disability’, what comes to mind? In part one of • Tell me about any experiences you Gateways, women with have had while caring for people with mobility disabilities were disabilities? asked to participate in focus groups to • What have these experiences been like discuss their personal experiences with for you as a healthcare professional? healthcare providers when accessing • What do you think these experiences cancer screening. were like for the person with a disability? In part two of Gateways, focus • What did you learn from the groups were held with healthcare interaction? providers to hear about their experiences, • Based on your experiences, what are concerns and feelings when screening some ways to improve the experience women with mobility disabilities. In for these patients? doing so, the Gateways Team wanted to find out healthcare professionals’ learning Information gathered from all focus needs about providing care for women group sessions was coded and analyzed in living with mobility disabilities. order to come up with some underlying themes. For example:

Focus groups were held with 43 • Internal Barriers: normative healthcare providers from the Joint assumptions, healthcare providers’ Department of Medical Imaging at three Attitudes and Knowledge, different academic teaching hospitals in Architectural, Equipment, Human Toronto: Mount Sinai, Women’s College Resources, Systemic Constraints, and Princess Margaret. Separate focus Communication Constraints groups were held with clerical staff, • External Barriers: Transportation, mammography technologists, and Equipment, Support Constraints, radiologists from each hospital between Patients’ Attitudes and Knowledge, Participation and Experience, Anxiety,

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Communication Constraints, Past Examples of things Healthcare Negative Experiences Providers do to provide appropriate care for women with disabilities: • Facilitators: Providers’ Attitudes and Knowledge, Participation and • Book patients for less busy or longer Experience, Notice and Knowledge, appointment times Internal Communication, Patient • Pre-book ultrasound in case it is Communication, Volunteer/ Caregiver necessary Assistance, Systemic Improvements • Expedite appointment (particularly if patient arrives by Wheeltrans) • Learning Needs: Communication, • Direct patients to larger change rooms, Disability Education, Clinical assist with changing, toileting, and Education completing forms as necessary • Communicate more deliberately and Results: talk patients through the mammography procedure I WANT TO HELP, BUT, WHAT DO YOU DO IN A SITUATION LIKE BUT WHAT DO YOU DO WHEN…. THAT?

Health Care Providers: WOMEN WITH DISABILITIES:

• Care about patients and empathize • May vent their frustration over with the fear and anxiety patients may systemic Issues to HCPs (Healthcare be feeling when they come for breast Providers)? cancer screening. • Respond to assistance from HCPs in a • Recognize the need to treat patients mixed fashion, which is ultimately with disabilities as people. confusing and paralyzing? • Recognize that offering help, communicating well, being patient, HEALTHCARE PROVIDERS: and being encouraging to patients with disabilities is important for their • Experience general discomfort and comfort. uncertainty about respectful and • Recognize that screening is a appropriate communication/interaction collaborative activity. strategies for patients with • Understand that patients with disabilities? disabilities are knowledgeable about • Find novel care situations their own bodies; staff must ask challenging? questions, listen, and follow their lead. • Are concerned about suboptimal

imaging? may not understand or be able to actively participate in procedure, Quotations from health care providers which is stressful and difficult for who participated in focus groups: health care providers.

“I guess maybe sometimes, • Some patients will not actively because a lot of them value participate in the procedure, which is their independence, I don’t stressful and difficult for health care know how to ask certain questions providers. without offending them. So, like, Health Care Providers: sometimes… you open a door for somebody and sometimes you get, like, • Make a lot of (stereotypical) ‘Thank you’, and then other times assumptions about what patients are they’d kind of be like, ‘Well, I can open thinking, feeling, and experiencing: the door myself’. That kind of thing, ex. anxiety and frustration is about you know? Them thinking that I feel fear of cancer, being a “burden”, the sorry for them kind of thing.” hassle of screening, and transportation issues, rather than other barriers and “So I have my experience, and I know stressors. what P3 (person above) was saying in terms of, like, you don’t want to cross • Receive little or no training about how the line and say, ‘oh, do you need help’ to care for patients with disabilities. too much. And you do want to assist them. Sometimes at the desk, like when When health care providers were asked you’re checking them and you see the how much training they receive on double doors they have to go through, disability issues, some of them said: and you’re sitting there. It’s like, you want to run and go open the door, but “There was no formal training then you don’t want to… you know about disability. I think I just what I mean, you don’t want to cross learned… There was more, like, the line by asking, ‘can you get the regulations and procedures. The rules door?’. It’s a little bit hard.” of what you should do or not do. It doesn’t tell you, like, when you do one Successful mammography screening on one patient care, how can you help requires good provider and patient the patient the most. Or make them interaction (active engagement and feel more comfortable or how to read participation during procedure): their anxiety. That was just more like, ‘this is what the government says’. So • Patients with cognitive impairments

Final Results of Gateways II:

The final product of the Gateways Project will be a Disability Education Program which will:

• Bring the voices, needs, and lived experiences of service-users into the

walls of an institution in the form of a training video; • Assist healthcare providers to develop embodied empathy for women with

disabilities • Improve the mammography experience of women with disabilities who get screened for breast cancer;

and to; • Promote health equity for women with disabilities accessing cancer screening.

The Gateways Team has recently hired a well-experienced individual who has filmed many teaching videos. The DVD will be approximately 13-15 minutes in length and will include women with disabilities talking about their cancer screening experiences as well as a health care provider talking about their experiences around screening women with mobility disabilities. It’s all very exciting. We will keep you updated as further results enfold.

CILT’s Volunteer Vibes is a quarterly publication of the Peer Support Program. If you are interested in volunteering at C.I.L.T. please call Nancy to request a Volunteer Application Package.

Centre for Independent Living in Toronto (CILT) Inc. 365 Bloor Street East, Suite 902 Toronto, Ontario M4W 3L4 Tel: (416) 599-2458, extension 227

Fax: (416) 599-3555 TTY: (416) 599-5077 Email: [email protected] or [email protected] Website: www.cilt.ca

Volunteer Vibes is also available on audiotape upon request.

Articles on products, agencies or services are for information only and are not meant as endorsements.

The opinions expressed in this newsletter are those of the contributors and may not reflect the views of CILT. CILT is a member of Independent Living Canada Supported by a Toronto Community Service Grant, United Way and Social Development Canada