The last time I wrote to you was just days before Christmas 2009 with the prospect of the General Medical Council (GMC) verdict looming large. It’s hard to believe that another year has grown wings and flown past; once again Christmas is on the horizon. What a year this has been! I sincerely hope that your new decade started rather better than mine.
The first couple of months of 2010 were truly breathtaking—but not in a good way! At the end of January, we learned to our horror that Andy had been found guilty on pretty much all counts of “serious professional misconduct” by the U.K.’s professional regulatory body, the General Medical Council (GMC). The loss of his license later in the year became an inevitability, so I suppose that could be called a double whammy. But beware of ever saying that things cannot get worse. In my experience, they nearly always do and quite swiftly too, and so it was that Andy—beaten, battered, and bruised—was also unemployed by the middle of February: his dream to offer comprehensive care to children with autism while unraveling the cause of their condition lay shattered, along with his career prospects. I confess that my “stiff upper lip” wobbled quite a bit in those first few weeks, and gestures of kindness and compassion from our friends were met with energetic nose-blowing by me.
Fear is a terrible emotion. It freezes you and renders you unable to think straight or act effectively. The middle of the night is its favorite time to visit. Many was the night when I lay awake wondering what on earth we would do now. The selfish part of me wondered how we could continue to live and feed our children. I would then move on to wondering how Andy could continue his work and (dire thought) if he could not, what would happen to him and what would happen to the victims of possible vaccine damage on whose behalf he had worked so long. Had the “evil empire” succeeded? Was this then the end of that long journey that he and I had embarked upon all those years ago—more recently with our four brave children also accompanying us?
News of the inevitable loss of Andy’s license and then his job loss travelled swiftly through the autism community, and the phone rang off the hook with concerned friends offering not only condolences but also practical and financial advice. It was a huge comfort to us both. But Andy did not allow himself any self-indulgence or mourning. Despite, or perhaps because of, all that had happened, he literally picked himself up and set about the process of “carrying on.” “I’m going to write a book!” he announced. It was the middle of February. He had written various pieces for The Autism File magazine. He and I had started, not very successfully, collaborating on a book. Our visions were just too different, but we had done a great deal of research and preliminary writing. When he added the GMC kangaroo court to the mix and with it the wealth of previously secret documentation, he was in good shape to get writing. And write he did—like a man possessed. He was at the computer from early in the morning until late at night: day in and day out. It was the focus that he needed, painful but cathartic.
“We’ll have to publish it ourselves. No publisher will touch this and anyway there isn’t time to find one,” he said. I swallowed hard, but agreed. We would find the money somehow. The story had to be told, and it had to be told immediately. Too much “bad stuff” had gone down. Too many lies had been told, along with the realization that the GMC verdict—rather than being fair, careful and measured with a standard of proof “beyond all reasonable doubt”—had instead been a foregone conclusion. The public needed to know.
Well, as you know by now, the book was written and published. What you don’t know is that a publisher found Andy. Tony Lyons of Skyhorse Publishing contacted him and asked to publish the book. It was incredible! And so it came to pass that Callous Disregard was published in May 2010, just over 3 months from its inception. And with sweet irony, it happened on the very day that the shameful GMC Apparatchik announced that Andrew Wakefield had been found guilty of serious professional misconduct and “callous disregard for the suffering of children.”
For those of you who have yet to read the book, it tells the compelling story of how Andy Wakefield became involved in helping to unravel the cause of disintegrative autism and to elucidate the bowel disease so often associated with it, and then it tells how the background dark forces of power, money, and self-interest sought to silence him. It is a good read, and you should buy a copy for everyone you know who has drunk the “kool aid” and believes the rubbish written about the “now discredited Andy Wakefield.” (If I can allow myself a little plug here, buying the book through our website, www.callous-disregard.com, means that you get an autographed copy and that the money raised goes, in part, to continuing Andy’s research. What a perfect Christmas gift!)
Late spring of 2010 saw the Wakefield family, with no holiday plans at all, not surprising really in the light of our tightened budget. But then Andy made another announcement. I was getting used to this by now! “Let’s go on a book tour! We can drive to California and have book signings where the various autism groups recommend.”
Not a bad idea. Not bad at all. Just a few, minor problems. We come from the U.K. where our idea of a long drive is anything over 4 hours. It takes 10 hours driving just to leave Texas! How could we possibly cover the huge distances involved? Our two older boys both had jobs in Austin (another mini-miracle!) so it would only be the four of us: Andy and me plus Imogen and Corin. But how could we ensure that they did not murder each other on a mega-road trip? Where would we stay? What route would we take?
Andy made the initial contacts with the stalwarts of the West Coast autism community: They are (in alphabetical order) Lisa Ackerman, Teri Arranga, Karen Dola, Becky Estepp, Cindy Emminger, Elizabeth Horn, and Doreen Granpeesheh. I had met Lisa, Becky, and Doreen before, but only briefly. The others I knew by name, and we had spoken on the phone. Armed with the Internet, my trusty e-mail, and a map of America, it was up to me to liaise with these lovely women and map our route, booking hotels in appropriate locations to span a period of three and a half weeks. Add to the mix that I am severely geographically challenged. No pressure!
Well, we did it, and not only that: we enjoyed it and saw some of this incredible country to boot. We left Austin on July 15 and returned home on August 8, having driven to San Francisco via Marfa, El Paso, Tucson, San Diego, Los Angeles, Santa Barbara, and Carmel (could not resist that!) and back via Las Vegas, the Grand Canyon, Sedona, and Santa Fe. What a trip! Admittedly, some of the hotels were not the most glamorous—we were on a budget after all—and some of them were not quite as close to the book event as they might have been. Once or twice we ended up on a road that was not exactly where we wanted it to be. I did tell you geography was not my strong point.
The book events, however, were all just amazing! It was such a wonderful experience for me and for Imogen and Corin to be out meeting the people whose lives have been so interwoven with ours. I was happy for them to see the effect that their father has had on the autism community. This has been hard for them. Over the years, they have had to endure long periods without their daddy. At least now they know why. For Andy, it was immensely reassuring. The fact that the dreadful bilge written about him has had no effect on those who know who he is and what he is about was empowering. The support and affirmation went a long way to healing some of those deep wounds that he bears and making him realize that—however badly he has been treated by those who really should know better—at the grass roots level, there is trust and faith and a will for him to succeed so that his work will continue.
I want to pay a special tribute to the wonderful ladies that I mentioned above. Each and every one is incredibly busy with their own lives, their work, and their children. Despite that, they took the time to engage wholeheartedly in this book tour, arranging events, publicizing them, and supporting the events and us. They were all so generous, patient, and immensely tolerant of my need for help with the mechanics of our journey. As we travelled up the coast from San Diego, we called in at some of the missions. One day I am determined to return and visit them all. For those who are not familiar with them, there are 21 missions in California built between 1769 and 1823 along El Camino Real (The Royal Road, named in honor of the Spanish monarch). At the time, it was the only road between the few civilized outposts, and it was later identified with the missions because the priests maintained the road and offered hospitable lodging to all. To me, these historical and precious buildings share many qualities with the bastions of the autism community in California whom I am now proud to call my friends. They have beauty and integrity. They are strong and resilient, overcoming all kinds of adversity and standing proud and true to their beliefs. In them, the weary and the frightened can find refuge and hope. Those terrified by the prospect of caring for a child with autism find community and love. From the bottom of my heart, I want to say thank you for making our first Callous Disregard book tour such a success! I look forward to meeting many more of you as we venture across the USA on future occasions.
And so it is that, despite the disappointments and betrayals that started this year, our bumpy path has smoothed out somewhat and there have been other exciting and positive developments. Andy has formed a new charity and his work will continue. His quest to chisel away at the autism enigma will not be de-railed. I know he will be telling your more about that. He also now plays a major role in the Autism File Global, together with the inimitable Polly Tommey. It’s going to get bigger and better and more accessible as an on-line entity and I hope that you will tell all your friends to subscribe because it provides a voice for parents of children with autism and when we all shout together we will be heard.
The latest addition to the Autism File Global family is another wonderful development: The Autism Media Channel. I am excited to tell you that I play a small role on it. I have my own radio show called Prairie Nights, which will be airing soon. I hope you will like it. I should just explain that I use my professional name when I work - Mrs. Carmel Wakefield is Dr Carmel O’Donovan!
In closing, I send you Season’s Greetings and every good wish for Christmas and the New Year from sunny Austin, Texas. I have a feeling that 2011 is going to be a good year for us all. I really hope so!
- Carmel Wakefield
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