Her grandmother always told her she had special feet.
"Her big toes are ok," says Sandy Scott, of Wabaseemoong First Nation located in northwestern Ontario.
"The other four… she doesn't have no toe nails, [it's] just like a skin. I'm not sure if there are bones inside those little toes."
Scott is talking about her granddaughter, Jessie Newton, who was born with webbed feet 15 years ago.
"When she started walking, she used to fall over," says Scott.
Scott had to get a special brace for her feet and ankles just so Jessie could keep her balance.
"Sometimes my feet do hurt when I wake up in the morning and I can't walk on my feet for a long time," says Jessie.
It's one reason why Scott took her granddaughter to be tested for mercury poisoning, The first time was when Jessie was six years old, and she was retested as recently as last year. But in both instances, the test results didn't show mercury poisoning.
It's a test many in the community have taken.
Community members from Wabaseemoong and Grassy Narrows First Nation, both located in northwestern Ontario, can apply for compensation for mercury poisoning through a government operated Mercury Disability Board.
The board was created after paper mill dumped massive amounts of mercury into the English and Wabigoon river systems between 1962 and 1970. Eventually it led to a settlement to address claims of mercury contamination.
Many Indigenous peoples were left stricken with Minamata Disease because of the contamination. Minamata Disease is a rare condition with symptoms that include loss of balance, narrow vision, slurred speech, and sensory abnormalities such as numbness.
In the 1970s, it was Dr. Masazumi Harada—a renowned Japanese mercury-poisoning specialist—who first determined that Minamata Disease was wreaking havoc on animals, fish, birds, and people in that area after the spill.
Dr. Harada had been studying mercury contamination in both communities and conducting tests on First Nation members.
But the Canadian government has yet to admit that Minamata Disease even exists in Canada and of late last year, the Japanese study was still the only one being done in the area, with Canadians scientists long gone.
When someone applies for compensation from the Mercury Disability Board, they must first fill out a three-page application that asks about symptoms and whether the applicant has seen a doctor. The Board then arranges for a neurological assessment (or puts the applicant on a waiting list for an assessment).
The neurological assessment looks for certain symptoms, like tremors, lack of coordination, or vision impairment and applies a score. The more symptoms, the higher the score. The higher the score, the more compensation a person receives.
Compensation begins at just $250 per month, a rate that has not changed since 1986.
From 1986 to March 2014, the Mercury Disability Board processed over 1,000 applications for benefits.
Although some community members have received compensation since the board was created in 1986, many say they're being denied despite showing symptoms.
During 2013-2014, the Mercury Disability Board approved just one pediatric applicant out of 4 who attended for an assessment—all from Wabaseemoong. At the end of the year, there were 13 children waiting for an assessment.
Symptoms have been seen in people 25 and younger, even among newborns, like in the case of Jessie, according to several community members.
Scott claims mercury-poisoning "runs in the family" because both of her parents received benefits from the Mercury Disability Board.
She is concerned about other children in the community.
"Some of the kids, the way they walk, they wobble when they walk," says Scott.
Farah Boyd, 29, of Wabaseemoong also went for mercury testing. For the past five years, Boyd's feet often swell up and she loses sensation in her toes. Her legs shake too, throwing off her balance.
Fish was long a staple of the local diet, one which Boyd says she ate. Fish from that area continue to have high levels of mercury since the spill.
"I think it's time now, where our focus is to look at the younger generation," says Bobby Mandamin, a former health worker for the community.
"[Mercury] goes dormant and then it starts attacking your immune system."
Mandamin says it can take years before someone shows the signs of mercury poisoning. It is why it is important the younger generation get the attention they need, he says.
Receiving compensation himself because of mercury poisoning, Mandamin says he is well versed with the Mercury Settlement Act, once sitting as a band representative during the late '80s.
"Now it's changed where they're making their own interpretation," says Mandamin.
Mandamin claims that when he sat on the Mercury Disability Board meetings would often go off track, or members wouldn't completely follow the guidelines.
It took Mandamin several times to apply and appeal decisions made by the board to prove he was suffering. Several of his siblings were denied.
According to the board's website, it isn't uncommon for family members to be denied while others are approved, since it's an individualized application process.
Margaret Wanlin, chairperson of the Mercury Disability Board, says a pediatric neurologist carries out the testing.
When asked about children being born with abnormalities, such as Jessie, Wanlin can only say that there have been children who received compensation in the past.
"Obviously there's lot of different illnesses people may have, but mercury is associated with certain kinds of difficulties," says Wanlin. "It's not everything."
Wanlin says that although the Mercury Disability Board was established to deal with people contaminated before 1985, the Act is written in a way that makes it open for all residents.
Scott says that when Jessie was just a toddler, a team of visiting Japanese doctors assessed her and informed the family that she was suffering from mercury poisoning. Scott claims the Japanese doctors could not understand why the Mercury Disability Board wouldn't compensate the young girl.
Meanwhile, Jessie complains about numbness in her legs, getting the feeling that she might fall and is still seeking compensation that may never arrive.
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