Easter Seals Manitoba

VISION
INCLUSION
PARTICIPATION

(VIP)

Summer 2006

Everybody Knows Somebody with a Disability – Easter Seals is There

Published by the Society for Manitobans with Disabilities Foundation.

Stepping Out with Cha Cha

An Active Life is a Happy Life for Gurmukh S. Rukhra

You can’t help but feel an instant connection with Gurmukh S. Rukhra. He’s a friendly guy. Polite, jovial, funny. But try pronouncing his name correctly on the first try!

“My Canadian friends call me Cha Cha,” he laughs, “It’s easier to pronounce.”

More than ten years ago, Cha Cha had to quit his full time job at Commercial Plating because of problems with his knees. They were giving out on him. After eighteen years of heavy lifting, they just couldn’t take the strain anymore.

With his only source of income dried up, he was not only un-employed, he was also disabled. He wasn’t sure where to turn for help.

Then, one day as he was listening to an Indian program on an ethnic radio station, he heard about SMD. Taking down the number, he immediately called and says it’s
one of the best things he’s ever done.

After a few months, SMD helped Cha Cha with finding new employment. He became a companion for an elderly doctor who, as a result of many strokes, had become severely disabled. Cha Cha would help feed the doctor lunch and supper, and the two spent many hours together getting to know each other.

One icy day in  November, Cha Cha’s son picked him up from work. Unfortunately, they were in a car accident and the injuries he sustained were enough to prevent him from continuing on as the doctor’s companion.

“After two weeks’ time, he did not survive,” says Cha Cha. “I don’t know if he missed me or what, but he was gone. I loved him very much and I really miss him,” Cha Cha says of his friend.

Besides receiving massage therapy through SMD, Cha Cha also attends SMD’s Breakout program during the summer. As part of the program, Cha Cha gets to choose a variety of outings he would like to attend. They’ve gone everywhere from the Forks Market, to days spent at various parks across the city, including Assiniboine Park. This summer, Cha Cha will enjoy outings to Gimli, Folklorama, Kildonan Park (where he’ll enjoy a barbeque) and Rumors Comedy Club.

“I like that place,” he says of the comedy club, considering himself a bit of a comedian. "In the winter, they take us shopping to Polo Park, to movies and to the Imax theatre at Portage Place."

When jokingly asked to share his real feelings about Easter Seals and SMD, Cha Cha enthusiastically replies, "I love it!"

A big advocate for SMD, Cha Cha says he is always praising the organization, telling anyone who will listen about all the help and support he's received over the years. "SMD has helped me a lot!"

SMD is a family of organizations that work together to improve the lives of persons with disabilities in Manitoba. All of the activities and services provided through SMD are partially funded by Easter Seals Manitoba.

Easter Seals has been helping adults and children with disabilities reach their highest level of independence. Today, over 1500 Manitobans rely on Easter Seals,
through SMD, to provide programs and services including Case Management/Counselling, Work Experience, Services for Deaf and Hard of  Hearing Adults, Computer Training, Vocational Assessment, Employment Services, Life Skills Programming for Adults and financial support.

Memories From Camp

An SMD Consumer Recalls Her Camping Capers

Many children have fond memories of summer camp. Colleen Marek is no exception.

The difference is that Colleen relies on a wheelchair for mobility and electronic equipment for communicating – something that made her camping experiences both more
challenging and more meaningful.

“I became involved with overnight camps at age 10,” says Colleen, now age 20, recalling her first year attending one of the SMD overnight camping trips. “A social worker
suggested that my mom and dad let me try going to overnight camp with a worker from SMD.”

“Ken and I were very concerned about Colleen going to camp as she had never been away from home for that degree of time,” says Phyllis, Colleen’s mother. “Our main concerns were whether or not Colleen could have fun and would be looked after properly.”

“My biggest concern was letting my worker know what I needed, and whether or not I would have my communication book and litewriter with me so that I could communicate my needs,” adds Colleen.

Fortunately, SMD had a good history with Colleen. At age 3, she began receiving physiotherapy and occupational therapy at home thanks to SMD’s ability to provide services in rural areas. This past relationship made it easier to provide information to the SMD worker accompanying Colleen on her camping trip, giving the worker a better understanding of Colleen’s needs and how to meet them in a camping environment. Her worker also encouraged Colleen to really make the most of her first camping experience.

“I tried lots of activities because my worker gave me the opportunity to try as many things as possible,” Colleen remembers. “Some of the activities included kayaking,
swimming, canoeing, sail-boarding (lying on the sailboard with my worker pushing me thru the water), horseback riding, wall climbing and the list goes on.”

“My favorite times at camp were doing the girl things like nails and hairdos…and talking about the boys!”

When she returned home, her parents knew Colleen had a good time because she came home “tired but very happy.”

“From then on, Colleen went with our blessing to have fun and experience camp life to the fullest,” says Phyllis…which is exactly what Colleen did for the next six years.

It’s been a while since that first camping trip. Today, Colleen has graduated from Westpark School in Portage la Prairie, is an avid power wheelchair hockey player and will
soon be taking independent living and computer courses to prepare her for a new chapter in her life. But both she and her parents still appreciate the work Easter Seals and SMD do together.

“Easter Seals is very important since we, as parents simply could not afford the high cost of sending Colleen to camp with a worker,” says Phyllis. “Without Easter Seals, Colleen would have spent summer at home and therefore not have those happy memories of her childhood.”

“Easter Seals is very important because they help make wishes and dreams come true,” says Colleen. “The funding allowed me to go to camp with a worker and experience camping the same as other young people.”

It’s How He Plays the Game

Power Wheelchair Hockey has Scored Big with Tyler Barrett

When it comes to hockey, Tyler Barrett doesn’t just love the game, he lives the game.

A hockey fan since age four, 16 year-old Tyler began playing in 2003. Since then, he’s come to embody the term “team player”. He plays both forward and defense, is Captain of his team and, when the need arises, coaches as well. If there’s a way to help his team, Tyler is there to lend a hand.

Why didn't he start playing sooner? Because the Power Wheelchair Hockey league did not yet exist!

Tyler has Cerebral Palsy, which affects the brain and muscle movement/coordination. He and his family have been involved with SMD for a number of years, so everyone there knew he was a hockey fan. That’s why when SMD’s Recreation and Leisure program began organizing the new hockey league – the first sports league in Manitoba solely for people in power wheelchairs – Tyler was one of the first people called. He was hooked after his first practice.

Power wheelchair hockey is exactly what it sounds like: hockey played using power wheelchairs instead of skates.

“There are eight to ten people on the average team,” explains Tyler, who also points out that players’ ages range from 10 to 82. “We play on a gym surface, in the St. James Civic Centre. Some people have their sticks attached to their chairs to shoot.”

The hockey sticks attached to the chairs have a dowel in the blade to help those players with less upper body mobility to maneuver the ball (which is used instead of a puck).

“There are also a bunch of special rules,” continues Tyler. “There are things like ‘excessive driving’ and when you bump into people, you get a penalty.”

The love of hockey is apparent in all the members of the League, who come from places such as Winnipeg, Gimli, Beausejour, St. Andrews and Portage la Prairie to compete every Sunday throughout the winter (excluding Christmas and other holidays). Their fans are just as dedicated.

“Oh yeah, my Mom’s a hockey mom,” laughs Tyler, who says his parents also help raise additional funds for the League by selling coffee and 50/50 tickets. Right now, Tyler’s family and the rest of the League are raising funds for a team trip to Toronto to play in a national tournament next year.

Before the League, many of the players were unable to play any sport. Now, thanks in part to Easter Seals fundraising initiatives, they have the opportunity to take part in the game they enjoy and share in the pride of being on a team. But Tyler points out there are other great reasons for getting involved.

“It gives you a chance to meet new friends. I’ve met a lot of new friends since I started. And it’s fun. When people don’t get the chance to play hockey, they can come here and play.”

Tyler’s advice to anyone in a power wheelchair who enjoys hockey? “Come join or at least come to see what it’s like. It could be the right thing for you.”

One Day at a Time

For Gisele Verrier, the Only Way to Face Life Is Head On

It was only four years ago that Gisele Verrier was going about her days, enjoying a busy and independent lifestyle.

Even though Gisele had suffered epileptic episodes since she was a young girl, the condition had been controlled by medication and she’d adjusted to her fate, believing she had no other option.

But on a visit to her doctor, she was given some good news. He told her she was a candidate for an operation that could rid her of the epileptic seizures.

“I was 40 years-old when I found out there was a possibility that I could be seizure-free,” she says.

With the types of seizures she experienced, the doctors explained that, post surgery, there was a 75 per cent chance that she would no longer experience the seizures. “I was really optimistic about my chances.”

Unfortunately, that first operation actually made Gisele’s seizures more frequent.

Seeing her quality of life deteriorate, she approached her doctor. She wanted to have a second operation. The doctor told her, however, that the odds of success were less than the first time. “I was told there was a 50/50 chance of success, but I thought that - I’m going to go for it, because I cannot stay like this,” she says.

While still in recovery, Gisele had a stroke and became paralyzed along her right side. As well, her left eye would not open because a nerve had accidentally been severed
during surgery.

“I went from being totally independent to totally dependent, almost overnight,” says Gisele.

She struggled to adapt to her new life, which no longer included working, and depending on others to do everyday tasks. But Gisele says that getting involved with SMD’s Adult Leisure and Recreation program helped make things a little easier.

Gisele now enjoys a variety of activities through the program. She stays busy with Social Club on Tuesdays, Dinner Club on Wednesdays and is involved in the Breakout  program offered throughout July and August.

She says if it weren’t for the funding provided to SMD through their Easter Seals fundraising initiatives, she wouldn’t be able to do even half the things (activities) that she does.

“I really like it! It’s a way of getting out of the house and being with other people.”

Last year, Gisele – along with a group of others from SMD – traveled to Camp Morton, out by Gimli for a few nights. It was with some hesitation that she initially agreed to go.

“I didn’t know how I’d handle it because I get homecare, but it worked out well.”

Unfortunately, the weather didn’t cooperate.

“It was raining outside, but you know what? Rain or no rain, either way we were away from home, and in a completely different environment. So, it was really neat – I really enjoyed it and I’m going again this year.”

Gisele’s experiences are possible due to the support of Easter Seals donors. The Adult Leisure and Recreation program offered through SMD is a year-round activities
program that provides SMD consumers with social, leisure and recreation opportunities.

Community-based programs are offered and staff work to ensure activities are accessible and affordable. Weekend outings and day trips to local summer attractions, cabin camping, art groups, massage therapy, social dinner club and drop-in groups are a few of the activities that provide people with disabilities the chance to more actively participate in the community.

Gisele is very thankful for the opportunities she’s had – and continues to have – through the program.

“You don’t know what it’s like to take it one day at a time until you are forced to. Now, I take it one day at a time,” she says.