This may be the weirdest weekend I have ever had and I have had lots! On Friday, March 6, 2015, and without any heads up to even our task force, Rona Ambrose, the Minister of Health for the Government of Canada stood up in the House of Commons to announce a settlement has been reached for compensation of Canada’s remaining “Thalidomide Survivors”. The specifics are $125,000 immediate relief to each “Victim” no questions asked. Then, starting in 2016, a fund of $168,000,000 to assist with medical and specific needs acquired as a direct result of the effects of the medication. Clearly, it is a bit more detailed and a lot of Government Speak and one’s immediate reaction is…WooHoo! That’s the noise the machine makes at the lottery kisoks when you have a winning ticket! Rona Ambrose announced…we won!
Just so you, the reader, understands my reason for writing this, and in case you missed the memo; I am a “Thalidomide Survivor”! I was born without arms in July of 1960 as a direct result of my remarkable birth-mother, Sophie Pacholko, being given a sample package of the now infamous medication, Thalidomide. It was to address symptoms of “morning sickness”, the nausea common amongst newly preganant women that typically occurs in the first trimester when the fetus is at it’s most delicate and developmental phase of growth. I am not an expert but I’m pretty sure I know a lot more about this than most people and not just because I pretend to be “smart”.
In 1988, I travelled to Ottawa for my first meeting with a delgation of “Thalidomiders” (a label we gave ourselves) and representatives of War Amps of Canada including its excecutive director, Clifford Chadderton. Mr. Chadderton opened a literal “Pandora’s Box” and here’s why. Thalidomide deformed limbs, feet and hands. I’ll explain how in a bit, but limb deficiency was the expertise of War Amps. When I think of War Amps, I think of the people who used to send out “Key Tags” in the mail. As a kid, I loved the miniature “license plates” that were the tags and for a donation of a set ammount, you would attach the tags to your key chain and if you lost your keys, all people had to do was drop them in a mailbox and you’d get your keys back free of charge. My parents always donated and though we never had to use the service, it was a vivid memory of my childhood in Yorkton, Saskatchewan. What I failed to recognize in those days was why did War Amps exist?
Clifford Chadderton was both a veteran of World War II and a leg amputee suffered in action. I will leave out his lengthy story and jump to the simple fact that services for amputees from the war were sorely lacking and Chadderton created a non-profit group and called it War Amps. Not only did war amputees make the tags in an Ottawa workshop, but benfitted from the employment created by this program. But War Amps grew and in fact “morphed” so today it is better known for “Champs”, a clever word referring to “Child Amputees” and along the way, the non-profit group has become the “go to” organization for Canadians with limb loss, either from accidents, illness, or birth defect.
In 1961, an inordinate number of babies were being born in Canada with birth defects. In fact, these “defects” were already on the rise in Europe starting around 1957, but these were different times so where today, something happening on the other side of the planet is known about instantaneously, this wasn’t the case in ’61. In fact, the connection to infant deformities and Thalidomide were not made as quickly as it should have and the drug continued to cause damage and death (it is estimated that hundreds of thousands of babies may have died and been blamed on miscarriage) until 1963 when it was banned.
In 1963, the world had come to recognize the horrible impact of the medication but, and this is vital, we had yet to give birth to the litigious society so prevelant today. Again, I could write a book about this alone but allow me one more vital link to my reason for writing this blog. It is acknowledged that “Thalidomide” was born at Auschwitz! It was one of several medications created at the death camps and pharmaceuticals alone were in their own infancy. When WWII ended, the scientists escaped war crimes and created a pharmaceutical company where “Thalidomide” was invented as a safe and reliable sleeping pill and/or sedative. There was no testing procedures for these companies yet because society couldn’t fathom that any company would manufacture anthing that would be of any danger to the consumer! HARD TO BELIEVE, HUH? The first medical trials were…ready? Doctors were given thousands of new pharma pills for varying issues and Thalidomide was one of them. The procdedure was simple. Take the pills home, give them a try and report back to your doctor who gave you the samples if they worked or not. Serious! When a preganant woman at her doctor’s office in Germany complained of sleeplessness caused by morning sickness, the wise doctor gave her a sample of this supposed safe product and when she reported back how the sample not only helped her sleep but got rid of her morning sickness…POOF! A miracle medication is born. There was one missing question…what about the babies growing inside these women’s bodies! Shocking, huh? Actually…schocking today but this was 1956!
When a courageous man, Dr. Lenz, a practising obstetrician from rural Germany began noticing an inordinate number of birth defects, he sent letters to colleagues around the country asking if they had also noticed a bump in the numbers, and indeed, they had. One of the world’s first “whisteblowers” had started the ball rolling and after two years of his own research, he presented his findings, which were what we might call today, a “No Brainer”. Yet it would take until 1963 for the equivalent at the time, the World Heath Organization to ban Thalidomide around the planet. But the damage had been done.
In Germany, the drug was called “Contergan” and the original patent holder was Chemie Grunenthal, today, they are simply known as Grunenthal. Mind bogelling they still exist! In around 1963, the German government brought charges aginst the company and its executives. Gruenthal declared bankruptcy and the executives reach the equivalent of plea bargains and not one employee or manager of the drug company did any prison time. Over time, the government managed to drag some signifcant settlement money from Gruenenthal but before that, the German people demanded their government do more. The logic was simple. The government is responsible for the health and safety of its citizens and as a result of a faulty product that misrepresented it’s safety, over 8,000 babies were born deformed and therefore, faced with extraordinary challenges; physical, health, and monetary, the government of Germany will provide financial compensation. The specifics are complicated but the very simple comparison would be thus: Each German survivor was given the 2015 equivalent of $250,000 and a monthly pension of between $5,000 and $15,000 per month based on severity of the deformity.
In 1963, the Minister of Health stood in almost the exact same spot as Rona Ambrose did last Friday and promised; “The health and welfare of every single baby damaged by Thalidomide will be the government’s responsibility and their needs, no matter how extraordinary will be met”. My family and I didn’t see a single red cent. There was no class action lawsuit on behalf of the believed 150 Thalidomide Babies in Canada although a small number of sharp parents of the time were able to get some money from a lawsuit launched in the United States, who had different tort laws than Canada at the time. Most Canadians were led to believe that all of us Thalidomiders got drug company money and government financial support. NEITHER HAPPENED!
So, back to 1988! I get invited to Ottawa to meet Clifford Chadderton, a few lawyers and accountants from War Amps and four other Thalidomide Victims, which is what we called ourselves then. I remember being struck by something; everyone there who were missing or had deformed limbs were mostly independent and almost had a swagger. I know I had one. Again, this meeting could also be a book but the short story is simple; Mr. Chadderton, being considered as one of few experts on limb loss in 1963, met countless babies with deformities. His and War Amps research on limb loss to adults, mostly to war and industrial and farm accidents, was substantial but birth defects, not so much. As he told us all the day we met, even in 1963, he knew lives would not be easy for these poor little babies, and he was prophetic. Even more incredible, the Canadian Government never bothered to see how we were doing. I guess if you ignore something long enough, maybe it will just “go away”. Well, if you ever met Cliff Chadderton, you’d know he never just “goes away”, although the world lost this amazing man a couple of years ago. His legacy, and he has many, but for us, he was a man of his word.
By the end of the weekend, our group had chartered the “Thalidomide Victim’s Association of Canada” or TVAC and I was one of the founding members and placed as “Secretary” on the executive committee. Secondly, a task force was created to investigate all of Canada’s Thalidomiders and draft a report for government to reveal the pressing needs of an entire group, which number at the time was confirmed as 127. Just over 125 people who had essentially been silent since 1963. We never saw a cent and the government’s promise of “taking care of us” was broken…period. Some well meaning but truly ignorant doctors of the time were able to convince the government that investing the taxpayers money on prosthesis for arms and legs would be the most effective compensation and here is the kicker…NO FAULT WOULD BE ADMITTED! Bingo.
Almost every thalidomider I know to this day were taken from their homes to urban rehab hospitals for “repair”. I made my first visit to Regina and the Wascana Rehabilitation Center in 1963. It was two hours away from my home in Yorkton and I would be there for six weeks. The first morning, I had running shoes put on my feet and the laces tied so tight, I couldn’t take them off. I never wore shoes with laces…ever! I usually wore the equivalent of today’s flip flops or if I was dressing up, Hush Puppy slip-ons. I asked why I had to wear shoes and I was rudely told that they were going to “Break me of my filthy habit of using my feet!” HONEST!
Over the next 12 years, I would end up at 97 clinics across Canada and be forced to use artificial arms…in the hospitals! When I got home from usually three to six week stays away, my Mom would take off the arms, throw them in the closet and send me out to play. If you don’t know my actual story, you are probably asking a question; how could I be forced? Well, my story is a bit different than 97% of the other thalidomiders for a simple reason. When I was four days old, my birth family, Sophie and her husband, Peter, were counselled by doctors to give me up. So they did. They signed papers making me a “ward” of the Government of Saskatchewan. Three weeks later, Hilda and Jack Law, who were 55 and 53 years old took me in as a Foster Child. I never left. A personal observation is I was taught, like so many others I would meet, to use my feet for hands but there was so much more in my life than my talented feet. I was told over and over again how lucky I was to grow up in a home with no anger or bitterness towards the drug, the doctors, the drug company, etc. My name was changed to “Law” but more importantly, my family and I didn’t know officially it was thalidomide. It was key to the adoption that my personal files containing medical information and birth family history was sealed. We all assumed I was born this way directly because of the drug and I had to go to dramatic measures to prove this fact prior to 1991 when the first settlement came down. Dramatic, because it meant finding and meeting my birth family where it indeed was confirmed officially by my birth mom, Sophie, who I know by the way, and an independent witness who worked alongside the doctor who gave it to Sophie. For my own personal transparency, my first motive in meeting my birth family was for proof and confirmation, something that had dogged me. I was not certain I would receive any money but without this proof, I wouldn’t even have a chance. But my wife, Darlene, who is the anchor in our lives made me realize the more important motivation…Karma! I had to make it right. I had to find whoever these people were and whoever this woman was and set things straight. I NEVER ever blamed my birth mother, but through the task force exercise, I learned that too many “Survivors” did just that. The bulk of the Moms lived with tremendous, sometimes paralyzing guilt and blamed themselves. Nobody would want to live with missing limbs, right? But without the elements so common amongst thalidomider’s families, I grew up with an uncommon mindset. Having said all of that, it still took me until 1985 in my own life to begin to understand how hard this really was…on my foster parents! True, they had no guilt or anger but they still had to raise a baby without arms…and without financial support. In one of life’s true mysteries, my ending up being raised by Hilda and Jack Law was pure luck. In fact, I am guilty of saying it and countless people have reminded me how “lucky” I was. But let’s get direct.
Being born without arms…WAS NOT LUCKY !!! Having missing or deformed legs and/or arms, feet and hands is horrible! And if all that comes with that wasn’t enough, we were “Told” what to do. All of us! I went to so many clinics because as my “foster mother” (the only Mother I call MOM) Hilda Law felt obligated to help all of the other babies and their families. That was my Mom alright. But just ask any Thalidomide Survivor why we put up with all of that you will get a consistent…”No Idea!
We were born with disfunctional limbs, true but what we needed was support for our high needs, and yes…expensive needs. You can’t just pop out to the Thalidomide Survivors market for supplies. My Mom was a talented seamstress so she could fix my clothes but it still, then and now, comes with a price tag. Another truth is I have been successful as a speaker but I am going to be 55 years old and that means I am on the cusp of losing parts of my independence to something I didn’t ask for and even though I have done okay, my foster parents fought for many things other Thalidomiders never obtained.. When we published our task force report in ’91, over and over and over again I was disturbed by the sheer number of thalidomiders who never went to public school, or moved away from their parental home, or even had a date, let alone a marriage and children. Many did, of course, but so many didn’t. One day, it hit me!
This reference to the guilt and self loathing was its own disability! Imagine what these mother went through? They were nauseous, they had morning sickness, they were given a miracle cure and they took these pills believing, as the majority of doctors dispensing them, this has to be safe, right? Government wouldn’t allow a product, especially a pharmaceutical product, to be dispensed unless it was safe, right? Guess we know the answer.
What nobody knows, obviously, is what would our lives be like if Thalidomide was never invented. What would our lives be worth? Even a simple actuary analysis would point to a lot. So, in 1991, when the government responded to the task force report, they offered an olive branch. No formal apology or admission of wrongdoing but money, seemingly a lot. An average of $82,000 was given to each survivor and an agreement on our part we wouldn’t sue the government for more. Our then executive director, Randy Warren accepted the offer as he was led to firmly believe it was a “Take or leave it” gesture. Randy was adamant it wasn’t enough and pushed for pensions but there was no budging. It felt like a victory, and let’s be blunt, it helped at the time but if you do a simple calculation with a cost of living index, the $82,000 in today’s money would be $117,000 and the offer on Friday, $125,000. I was contacted by the media before TVAC had an official response and I plainly stated…”I feel a sense of gratitude for the $125,000 and I need to look at the rest of the offer of $168,000,000 for future needs, but want to thank Ms. Ambrose and the government for this first step, but we were asking for double”. By the way, and this wasn’t an official statement from TVAC, just mine, I am always about gratitude. It is one of my guiding principles as I was taught as a child to be thankful for what I have. Weird, huh? I have no arms and I am grateful! The same is true for the majority of the Survivors of Thalidomide. We are also very proud and humble. It feels like we should be thankful for this offer and in a sense we clearly are. There is just one problem.
Why is this government telling us what to do yet again? The House of Parliament stood on December 1st, 2014 and unanimously voted in favour of a private member’s bill to give the survivors of thalidomide what their task force was asking…full support. We didn’t get that Friday. We also shouldn’t have to jump through any hoops to receive the additional benefits as the determination of our needs categories were agreed to in 1991. This is not actually about money…it is about dignity and it is about a broken promise. You know, the hardest part about all of this is for me, and I am talking about just me…I am not litigious. I was raised to never blame anyone for my plight. I acknowledged and accepted, with grace I might add, the phrase we use today, but didn’t have back then, “It Is What It Is!” I have never asked for charity, in fact have played a significant role in raising almost $200,000,000 (yes that is Million) for charitable causes in my life and I am not boasting.
But here is the deal…This Isn’t About Me! This is about my family, our families. My parents are both passed away and too many survivors have lost or are losing theirs. I am blessed to be married to Darlene, to have an almost 30 year old son, Vance. I have countless friends and support but imagine the prospect of needing their help, something my own pride is already struggling with. Imagine those without the support that I enjoy.
So what is this really all about…The Lottery! No. In fact, it is really quite simple. It is about Canada following suit with every government on earth who suffered the truth of Thalidomide. It is about a promise, and truth, and support. Every Member of the Canadian Parliament voted for this. It has has been over fifty years. It Is Time! Time for some legitimate dignity…before its too late!