Born with malformed limbs 52 years ago, thalidomide victim still fights for compensation
Noëlla Hébert hopes government will show compassion to aging thalidomide survivors denied assistance
Noëlla Hébert isn't scared of anything.
The 52-year-old from Saint-Louis-de-Kent, who was born missing an arm and with malformations in her other limbs, says after a lifetime of fighting for acceptance and compensation, there isn't anything left for her to be afraid of.
"I fought all my life to be to be looked at as a normal person," she said. "This has been a battle from the beginning."
Hébert is one of three New Brunswickers who were rejected from a 2015 federal compensation program for thalidomide victims. They have been arguing even since that they deserve to be recognized, compensated and given assistance for their far-reaching physical disabilities.
'I took a drug, Noëlla'
Hébert grew up in rural Kent County knowing she was different and knowing her mother carried an enormous burden of guilt.
"I can remember my mom always said, 'I took a drug, I took a drug, Noëlla, I took a drug.' But me, I didn't understand that … you always have in the back of your mind, 'Why did she take that pill?'"
Thalidomide, promoted as a treatment for morning sickness, was approved and arrived in Canada as samples in 1959.
Canada was one of the last countries to pull it from the shelves in 1962, but Hébert and others believe it was still in circulation in rural New Brunswick for years after.
Her mother, Marie, said that's what the local doctor gave her in 1967.
"She took sick," said Hébert. "She had a very sore stomach. She had insomnia. She couldn't sleep. And my grandma had just died. So that was the creation of all that."
She explained that in the 1960s, when the village doctor gave you a bottle of pills, you didn't ask questions.
"People were ignorant. They thought that medication were miracle cures," said Hébert. "Back then, when you had an ailment if you could have the help of a doctor — that was God."
There is no record that proves that the bottle of pills given to Hébert's mother in 1967 contained thalidomide. There were few pharmacies in rural New Brunswick, and it was common for doctors to give medication directly to their patients. The lack of a prescription kept Hébert and 166 others from being part of a federal compensation program for victims in 2015.
"It was just a bottle of pills that was given from one hand to the other," she said. "And so I did not have the documents that the government wanted but I still was a thalidomide victim."
'We got to push'
A 30-minute drive from Saint-Louis-de-Kent, Paul Richard was born in Rogersville in 1969 with malformed arms.
He believes his shorter-than-normal right arm, twisted hand and malformed left arm are the result of his mother also taking thalidomide.
"She was given a pill to alleviate nausea during her pregnancy and back then, well, they just took whatever doctors gave them and didn't question anything," he said.
Richard had three major surgeries on his right arm as a young child and remembers telling his parents when he was seven years old that he wasn't going to have any more.
"I made do with what I had," he said. "I played hockey all my life — I wasn't Wayne Gretzky but I had fun."
As far as he knows, his legs are fine. Richard jokes he's always been able to "run from trouble."
The husband and father of two worked as a heavy equipment operator at his father's business when he finished school. When he could no longer cope with the physical demands, he changed careers and became a highway maintenance supervisor and now works in an office.
Richard said he probably would have given up his battle for compensation, but Hébert is his mentor and if she keeps fighting, he will too.
"Thank God for Noëlla. I would give up but she keeps on telling me, 'We got to push.'"
'My body is my record'
Hébert, Richard and another New Brunswick man, from Val-Comeau, near Tracadie-Sheila, were among the 167 people who were rejected from the 2015 Thalidomide Survivors Contribution Program, which included a lump sum payment of $125,000, ongoing support payments and access to a medical assistance fund.
We're not fraudsters, we are victims.-Noëlla Hébert
Even though their mothers have both signed affidavits saying they took thalidomide while they were pregnant, and even though genetics reports and doctors all point to thalidomide as the cause of their disabilities, neither Richard nor Hébert qualified.
"They put us all in the same basket that we would all try to fraud the system," Hébert said of the third-party the government hired to determine who would qualify for the government program.
"But we're not fraudsters, we are victims. It's really really clear to see my body is my record — When you see me you can't unsee me."
Gesturing to her missing left arm, she points out the tip of a finger that pokes out of her shoulder. Her right arm looks normal, but has four skeletal malformations, including a thumb that is more like a fifth finger.
Her "good leg" does not have a hip and she has required reconstructive surgeries to allow her to walk. On the other side, she has a very short leg that is attached to her torso, again with no hip. She has undergone a surgery to turn her small foot backwards so she can use her heel as a makeshift knee in her prosthetic leg.
After 52 years, Hébert explained, her continued fight isn't about the money.
She wants Canadians to recognize that she and others have lived their entire lives with severe disabilities and discrimination.
Hébert considers herself one of the "lucky" survivors, because she was born with a "firecracker personality" and a family who saw her as normal.
"My mom says that … when she looks at me, yes, I'm deformed. But when she looks aside she pictures me as a normal child. That's the picture she had to create in her mind to be able to cope with this."
Hébert laughs as she remembers her big brother's reaction when, as a child, she told him she wanted to learn to swim.
"He said, 'OK, let's go.' There was no, 'How are we going to do that?' or 'You can't do it.'"
Hébert went on to attend university and to become a lawyer. It was one of the most difficult times of her life not because of the academics, but because it was nearly impossible for her to walk from her dorm at the University of Moncton to her classes.
"When you only have one leg and you have to walk in three inches of snow and the leg's not going — that was my biggest, biggest challenge," she said. "How many times I fell on the snow, in the snow with my 50 pounds of books on my back and came to my dorm crying and called my dad, my mom."
Again, Hébert's family encouraged her not to give up when she was ready to quit.
"My dad would say, 'Well go to bed, pray, put some A535 [medicated cream] and the first thing I want you to do when you open your eyes, call me and tell me how is it going.' And just on cue the next day it was always going a little bit better."
Hopes rise and fall
In January 2019, Hébert and Richard were hopeful once again when then minister of health Ginette Petipas-Taylor announced a new compensation program for those turned down in 2015.
We didn't ask for that pill to be introduced in Canada, but we had to deal with the consequence.- Paul Richard
The Canadian Thalidomide Survivors Support Program promised a one-time payment of $250,000, annual payments based on the person's level of disability and access to a medical assistance fund.
But their hopes were quickly extinguished. This time the hurdle wasn't missing documents, it was birth dates.
The first step of the preliminary screening for the new program is that you were born within five years of March 2, 1962, when thalidomide was pulled from shelves in Canada.
"They said, 'Well if the drug was still on the shelves after five years that we pulled it off the market, it should have been expired.' And then they added nine months for the birth of the child," Hébert said.
Anyone born after Dec. 21, 1967, will not be considered for compensation in this latest program. Hébert was born five weeks too late, on Jan. 31, 1968.
"It's the most ridiculous thing I've ever seen but I'm not surprised," she said. "We supposedly die about 10 years to 15 years younger of what we are supposed to. They're just playing with time."
Quest for closure, compensation
"We always miss the boat," said Richard.
For him, the compensation would "help immensely," but more important would be to finally be recognized as a victim.
"I know everyone wants something from the government," he said. "We didn't ask for that pill to be introduced in Canada, but we had to deal with the consequence."
Richard understands the fact that his birthday also falls outside of the eligible dates is a hurdle, but he hopes it won't be insurmountable.
He is calling on the Canadian government to consider what life was like back in the 1960s in rural New Brunswick. It was a time when doctors handed out medication, and no one threw anything away.
"All those medications could have stayed in a medicine cabinet for a few years and when they needed it, they would take it."
Like Hébert, he worries his body will continue to deteriorate, and he will need more support as he gets older.
Judge urges government to reconsider
The legal battle for Hébert and Richard continues. This month they appealed a ruling by Federal Court Justice Michael Phelan that would effectively close the door to them ever receiving any compensation.
Lawyer Alyssa Tomkins, a partner with Caza Saikaley, is representing Hébert and Richard, along with another New Brunswicker, pro bono.
She explained the 167 people who were refused government compensation in 2015 had launched a class-action lawsuit, which was settled in May.
The settlement order applies to all members of the suit, including Hébert and Richard, and means they have to accept the new 2019 program, even though it excludes them and 40 others based on their birth dates.
Tomkins is arguing that based on the negative or "deleterious" effects of the settlement on so many class members, the order should be set aside.
"Effectively, the settlement provides little benefit, we've alleged, to class members within the birth date framework. And yet it's devastating to those outside it," she said.
Let's work with integrity and let's show our hearts. We may have done mistakes in the past but it's never too late to show compassion.- Noëlla Hébert
Tomkins worries that if the settlement holds up, it will make it "extremely difficult" for victims to ever get the government aid they are entitled to.
In his ruling, Phelan also raised concern about the birth date parameters set by the 2019 compensation program and said there was a "less than clear" explanation from government as to why it was necessary.
"Canada's explanation for its rigid approach, while coldly scientific, lacked the compassion for the individual which the government espoused," he wrote.
"Some of the individuals failed to qualify by a matter of a few weeks — their stories were tragic and compelling. Class counsel recognized the problem but on this issue Canada was intractable."
Phelan said if it was within the power of the court, he would have struck out the date parameters.
"Regrettably, the court is powerless to do anything about this issue, other than to encourage a compassionate reconsideration."
Phelan goes on to acknowledge that class members are advancing in age and have increasing requirements because of their disabilities.
"Time is not their friend, if not yet their enemy."
Despite this setback, Hébert is undeterred and ever hopeful that the many politicians she has met with over the years will reconsider and put an end to this "nonsense."
"It's never too late. We can say, 'The past was the past. Let's talk with integrity now. Let's work with integrity and let's show our hearts.' We may have done mistakes in the past but it's never too late to show compassion."
'I am a hero of history'
Hébert's sense of humour is still intact as she talks about some of the accommodations she needs to continue to live in her own home.
"I don't have a ramp to bring my scooter with me in my truck. I don't have a ramp outside my door. I don't have the [modified] steering wheel because my steering wheel is too heavy for me to turn on my SUV."
"It costs an arm and a leg — which I don't have," she jokes.
She knows the body she was born with will never allow her to do what her spirit would like, but she still looks forward to a day with simple accommodations — raised garden beds, for instance, so she can grow plants on her deck.
"It's about the recognition of being who I am," she said.
"I am a hero of history. I've conquered the world with a not normal body and instead of looking at us with eyes of pity, they should say to us, 'Oh my God — you're champions. You should have a medal.'"