After the federal government announced lifetime compensation payments to victims of Thalidomide, survivor, Paul Settle is finally going to renovate his Hamilton condo’s kitchen to accommodate his needs. He’s looking to lower his counter and buy a new stove with easy access controls to avoid burning his arms by reaching across the burners to turn them off or on. Glenn Lowson photo for The Globe and MailGlenn Lowson/The Globe and Mail
It is just a mattress, a few square feet of coils and padding, but for thalidomide survivor Paul Settle it represents the promise of escape and the luxury he could never afford.
Mr. Settle puts down his cane and hoists his 3-foot-8-inch body on the bed, bringing his twisted half-legs up with him. He is in a mattress store near his home in Hamilton doing something he has not done in years: Buying himself a basic necessity of life to alleviate the agony that thalidomide inflicted on his body.
Since Ottawa announced pensions for thalidomide survivors last month, people like Mr. Settle are pondering purchases they had long denied themselves. Mr. Settle, 53, has slept on the same mattress for 25 years, waking up to "ice picks" of pain each morning. A mattress with a tilting back might help him get out of bed in the morning.
"I want to get the pressure off my shoulders and back," says Mr. Settle, who, along with his twin brother, Peter, also a thalidomide victim, has undergone more than 20 surgeries during his lifetime. "I've got used to pain all my life. But I've been afraid to spend money on myself."
The annual pensions of up to $100,000 from the federal government will never undo the devastation that thalidomide brought on its nearly 100 surviving Canadian victims. They were born in broken bodies, some with damage leaving them unable to cry, some with flippers instead of arms, others with missing kidneys – all because their mothers were prescribed a supposedly safe "miracle" drug for morning sickness when they were pregnant in the early 1960s.
No amount of cash will change that, compensate for the years of reflexively putting a deformed hand into a coat pocket to hide it, or being the object of strangers' cold stares.
"I'll trade all this money for a healthy body any day," Mr. Settle says.
Still, the money coming from Ottawa after a hard-fought battle by the Thalidomide Victims Association of Canada is bringing a measure of comfort to the drug's survivors in both small ways and large.
Mr. Settle, a father of two forced by pain to leave his job as a high-school library clerk more than a year ago, is almost completely deaf in his left ear; thalidomide attacked his internal ear bones while he was in the womb. Now he will get himself fitted with a hearing aid for the first time.
Some survivors are planning home renovations to bring kitchen counters and cupboards within reach. For others, an item such as a Roomba – the puck-shaped cleaner that moves around a room on its own – represents freedom from the pain of pushing a vacuum cleaner through the house.
In Vancouver, Gavin Bamber wants to hire someone to take him grocery shopping instead of having to rely on his friends. He has no arms or hands at all, so is unable to take items off shelves or pull open a door. "It's very liberating. I can call a friend and say 'let's hang out,' not, 'Hey can you help me.'"
On a deeper level, Ottawa's $180-million compensation package symbolizes a form of recognition for a group of Canadians who spent their lives in the shadows, their suffering and the tragedy that caused it largely forgotten by their country.
A thalidomide survivor in the B.C. interior had lived as a virtual shut-in for years, leaving the house only to go to the doctor's; since Ottawa announced details of its package on May 22, the man opened his curtains for the first time in years and has started to go out, Mr. Bamber says. "The money … has opened things up for some people. We can say there is a future, a happier future than there's been."
Ottawa's package translates into $75,000-a-year pensions for the majority of recipients starting early next year; they can apply to increase the amount to $100,000. They will also have access to a $500,000 a year medical assistance fund.
The impact of the cash is not confined to its primary recipient; in Mr. Settle's case, it spreads across three generations. For Mr. Settle's two children, 24-year-old Cassandra and 19-year-old Paul Jr., the money means a future that is not clouded by worries about their father's health. "I hope he uses it to take care of himself," Cassandra says. "It's reassuring to know he has something to fall back on."
It also offers some relief to his mother, Maxene, whose life was forever altered by the drug she innocently took while she was pregnant. Ms. Settle's health has been in decline. She suffers from glaucoma, arthritis and high blood pressure. No money will make up for the years of worry, the days spent by her twins' bedside when they underwent surgery or the guilt of living with the fact she took the medication in the first place.
It will, however, give her some rest.
"I feel they'll be looked after when I'm gone. That's what I was staying alive for," Ms. Settle said of her two boys. "I've been waiting all this time for the government to do something, and they finally did. I can go to my grave now."