Half-century of support

Hey there, time traveller!
This article was published 26/07/2024 (766 days ago), so information in it may no longer be current.

Uncommon as it is for a small non-profit organization to be around and fully functioning after 50 years, the Cerebral Palsy Association of Manitoba is thankful to be celebrating this special anniversary.

Since 1974, it has been providing opportunities for people with cerebral palsy through programs, advocacy, education and peer support.

Sarah Yates-Howorth has been involved with the association since her daughter’s birth 35 years ago, as a parent/member, board president, bike race participant, team captain and, ultimately, as an employee. She knows first-hand the value of finding a community that understands.

“When your child is born with cerebral palsy, and doctors, family and everyone is telling you it will be all right, you’re at a total loss,” said Yates-Howorth. “What is ‘being all right’ all about, anyway? What’s next? Why? Who is this person?

“At the association were fellow parents, people who didn’t tell you what symptoms to look for and leave it at that, nor doctors who threatened incontinence and a life of struggle.”

Yates-Howorth recalled that throughout her daughter’s childhood, her family attended all the events and parties hosted by the non-profit.

“To them, our children were the most valued people on earth, as every child’s parents must feel. No questions, no answers, just a feeling that we are all different but somehow linked.”

A term used to describe a group of disorders affecting muscle co-ordination and body movement, cerebral palsy is not contagious, hereditary or life-threatening, but covers a broad range of symptoms, from a slight speech impediment to cases of virtually no muscle control. It’s estimated that more than 50,000 Canadians have CP.

Through her work with the non-profit, Yates-Howorth said the focus is to enrich lives with the tools that make a difference.

“So, not just a wheelchair but the right cushions and custom-made adaptations to enable the wheelchair rider to be comfortable and as independent as usual,” she said. “We advocated for change, tried to convince the government that we needed more supports; talked about accessibility as a day-to-day concern.

“The association helped me recognize that people living with cerebral palsy and other disabilities are just like us. They have feelings; some can advocate for themselves. I believe everyone should have the opportunity to say ‘Yes’ or to deny what they’re offered, right or wrong. Disability is a barrier; too many people are afraid of the word itself.

“(The association) offers you a hand to reach across and confront that fear. People who live with cerebral palsy are people, just like us. Every time a child is born and is diagnosed, the association offers a family support, insight and caring. Slowly, we will change the world, together.”

Executive director David Kron said people with disabilities have come a long way, but still have a long way to go.

“Life is hard enough, and it’s even harder when you have a disability,” said Kron, quickly adding, “There’s no pity party.”

“It takes a village to raise a person, (and) we need to help each other. I spend a lot of my time doing advocacy. Systems don’t like people that don’t fit within the system.”

Kron has never let himself be defined by the disease but rather sees it as one part of who he is. Though he said he has a “funky” gait and requires a cane, his case is fairly mild.

Despite his mobility issues, his love of the outdoors has allowed him to travel around the world, often with a paddle in his hands.

“It was the one thing I could do well,” he said, explaining that he had considerable upper-body strength and was part of a competitive dragon boat team.

“The support of (the association) is to help guide people through the path. We do a lot of referrals and try to navigate the systems. We bring families together, giving people opportunities to meet and gather,” he said, noting that members range in age from newborns to seniors over 80.

The non-profit, which gets no government funding, relies on fundraisers, such as the annual bike race, which is in its 35th year in Winnipeg and its 30th year in Brandon. The association appreciates each of the 100 volunteers who help make the events successful and allow them to return every year.

On Aug. 8, there will be a 50th birthday barbecue at Blue Cross Park.

“We just want to have a good time,” said Kron, one of only two full-time staffers.

“We have thousands of photos from over the years. We are going to be thanking people, and celebrating the folks who’ve donated every year — their contributions; the people before us who built a solid foundation.”

Courtesy of the Winnipeg Foundation, the non-profit has a research fund with any surpluses going towards a legacy piece that will be used to sustain the organization in the long term.

“We are there for the long haul. When a kid needs a first bike, equipment, an iPad to communicate, we are there to sponsor a communications camp. We did a specialized beach wheelchair that goes in the water— anything we can do to make somebody’s life better,” Kron said.

“We sponsor Manitoba Possible and rehab and rec programs in the community. We’ve done university scholarships. We help support hockey in rural towns, and grants pay for ice time.

“We try to fund things that the government will not fund. We really try to close all the gaps. We are trying to roll that rock up the hill and do it together in the community, working with a lot of different groups and partnerships. All of us are in it together.”

Visit: cerebralpalsy.mb.ca/home

fpcity@freepress.mb.ca