Cystic Fibrosis Is Too ‘White’ For Ottawa Fundraiser

Cystic fibrosis too 'white' for Ottawa fundraiser
Carleton University students drop support for debilitating disease

Joanne Laucius
Canwest News Service
Published: Tuesday, November 25, 2008

OTTAWA – The Carleton University Students' Association has voted to drop a cystic fibrosis charity as the beneficiary of its annual Shinearama fundraiser, supporting a motion that argued the disease is not “inclusive” enough.

Cystic fibrosis “has been recently revealed to only affect white people, and primarily men” said the motion read Monday night to student councillors, who voted almost unanimously in favour of it. The decision caused heated reaction and left at least one member of council calling for a new vote.

Every year near the beginning of fall classes, during university orientation for new arrivals, students fan out across the city and seek donations from passersby. According to the motion, “all orientees and volunteers should feel like their fundraising efforts will serve their (sic) diverse communities.”

Nick Bergamini, a third-year journalism student on the student council, said he was the only elected councillor present to vote against the motion. The decision is an example of campus political correctness gone too far, he said.

“They're not doctors. They're playing politics with this,” said Bergamini. “I think they see this, in their own twisted way, as a win for diversity. I see it as a loss for people with cystic fibrosis.”

The Shinearama fundraiser is carried out by students at about 65 colleges and universities across Canada. It has raised money for the Canadian Cystic Fibrosis Foundation for almost 50 years and Carleton has been participating for at least 25.

During orientation week this year, Carleton students, who have raised about $1 million over the years, raised about $20,000, said foundation chief executive Cathleen Morrison, who was surprised and dismayed by the student association decision.

The rationale for dropping cystic fibrosis as the beneficiary is not correct, she said. CF is diagnosed just as often among girls as boys, although the health of girls deteriorates more rapidly, she said. It is commonly considered an illness that affects Caucasians, but that includes people from the Middle East, South America, North Africa and the Indian subcontinent.

” 'Caucasian' as we understand it isn't just white people,” said Morrison. “It includes people with a whole rainbow of skins.”

One of the councillors who voted in favour of switching the charity said Monday night that the information provided to the panel prior to the vote was factually incorrect, and he will be seeking support from other members to hold an emergency meeting to reconsider their decision. “After seeing all the reaction today, I definitely think it should be revisited and reconsidered,” said Michael Monks, who represents Carleton's business students for the student council.

Student association president Brittany Smyth said the motion came about because the association has been contemplating rotating the beneficiary of Shinearama to different charities each year instead of giving the money to a single charity.

“It's about people wanting to do something different,” she said.

The motion was forwarded by Donnie Northrup, who represents science students. Northrup did not respond to a request for an interview.

The preamble to the motion is Northrup's explanation for why he supports the motion, based on what he learned as an orientation-week volunteer, said Smyth.

In making a decision, it was not the preamble but the declaration itself that matters, she said.

“The preliminary is the councillor's own motivations and ideas,” she said. “Most discussion revolved around rotating the charity.”

Bergamini said he doesn't believe the decision represents the opinion of most students.

“They're playing racial politics with something that is supposed to bring people together – a charity,” he said.

Morrison, who hopes to get a chance to set the record straight with the student association, said students raise a healthy chunk of the approximately $16 million raised each year to support cystic fibrosis research.

The median life expectancy for a person with CF in Canada is just over 37 years, about twice what it was two decades ago. The money for research has helped produce a lot of international “firsts” including isolating the CF gene and carrying out the first double-lung transplant for a CF patient.

Meanwhile, public reaction to the student association decision has been swift, from those who denounced the decision as political correctness to those who facetiously mused about what would qualify as an “inclusive” disease. Others wondered if the student association decision would affect alumni donations to the university.

“The reasoning behind this is totally ridiculous. Eventually cystic fibrosis is a fatal disease. I wouldn't wish it on anyone,” said Marie Lunney, a Carleton graduate who has worked as a foundation volunteer. “If I had a choice between donating to CF or Carleton, I'd donate to CF.”