A forum for comments on FASD, sharing, life challenges, politics and other things that bother us. By GrampaBrian, FASD Advocate (AKA Brian Philcox)

Archive for March, 2020

A Great Canadian Collaboration (Maybe)

The Great Leap Forward: A Manifesto for Canadian Survival

Nothing lasts forever: no person; no product; no system; no dogma; no nation. Only those who evolve will survive. In order to grow, we must change. It’s OK to have rituals, but as the environment evolves, they must modify too. Granted, sometimes reality sucks, but there is no point moping over things that we humans can’t change. Our success, not to mention our survival, always depends on what we can change and when we do so willingly and with enthusiasm.

Canada sometimes seems like some sort of anomaly. We have evolved differently from the US in many ways and differently from the way the nation-states of Europe evolved. However, historically, there are many parallels. European colonizer/settler groups came to this part of North America looking for a different, if not better life than they had in the old country. Through arrogance, hubris or simple ignorance, these newcomers assumed that they were natural superiors to the local inhabitants and found it relatively easy to overcome the aboriginal peoples with new diseases and superior technology. When the British took political power over the French colonizers, historians referred to this power shift as The Conquest. The attempts to obliterate the native populations – and there were many different kinds – was basically cultural genocide. Obviously, these programs (pogroms?) were botched and we now have 3100 First Nation (FN) Reserves across the land now called Canada. Although there are some language group connections among some tribal nations, there is a wide diversity of custom, style and belief systems among them.

Recently, and not for the first time, an Indigenous Reserve has used the occasion of the development of an LNG pipeline in northern British Columbia to block the main road through their reserve, to tell the RCMP (the BC contracted provincial police service) to get off their land and for the pipeline company to cease work. In sympathy with the Wet’suwet’en Nation in BC, a group of Mohawks in Ontario near Belleville at Tyendinaga Reserve blocked the main CN and VIA rail lines. More blockages popped up on rail lines around the country with many volunteers from outside the First Nations communities. For over two weeks, all cargo and passenger traffic were shut down across Canada to the disruption of the Canadian economy. Although courts had issued injunctions to cease and desist from these blockages, police and politicians have been reluctant to use forcible arrests of the blockers for fear of creating standoff crises where individuals could be wounded or killed.

The political comparison of these FN territories to recalcitrant clan chiefs in the Highlands of Scotland or barons in medieval Europe who decided to buck the authority of their kings of the day may not be accurate. However, when First Nations want to be recognized as sovereign states and will only deal with Canada on a nation to nation basis, there is a formidable dynamic at play. Some of the hereditary chiefs at Wet’suwet’en insist on dealing only with the Prime Minister on a nation-to-nation basis. Yet, there appears to be no consensus among the various chiefs at this reserve and the spokesman for the hereditary chiefs there has declared that they are the only leaders who can make decisions about land use in their territory. 

The current impasse suggests that this may be the best time for Canada to take a hiatus to resolve the panoply of issues that have been nagging the body politic since the beginning. In the most recent times this country has been coping with the tragedy of the Iranian rocket strike of a commercial flight that killed all 57 Canadians aboard, the international panic over the Covid-19 virus and the spontaneous blockage of rail traffic by sympathizers of Indigenous political and climate concerns. There have also been ongoing and unresolved issues of trade sector problems with the US, clarity of the role of our Canadian Armed Forces and an inability to collaborate effectively with the Provinces.

And what about doing something constructive to alleviate the homeless issue? Is it so hard for someone to design a pre-fab, starter studio apartment for under $1000? Is Corrections reform no longer on the agenda? Is it only prejudice that keeps our society from creating safe and supportive communities for our mentally and physically disabled.? Why not start with safe havens for veterans with PTSD? As the philosophers tell us, “If you want to make progress, stop hacking with a dull axe, pause and sharpen the blade.”

Communities thrive when they collectively share responsibility for one another. Human dignity demands having a space that protects you from the elements, gives you privacy and allows you to protect your possessions, stay clean and prepare food. Often this is a difficult challenge in any society where there is economic inequality and a substantive part of the population that is not always capable of looking after itself without appropriate support systems.

A factor throughout the dilemma of the mental health issue is the unacknowledged number of individuals who have had their coping capacity limited by Prenatal Alcohol Exposure. Current studies indicate that the prevalence rate for Fetal Alcohol Spectrum Disorders (FASD) is at 4%. FASD is 2.5 times more prevalent than Autism and the presence of this disability throughout the land represents an issue of pandemic proportions. With over 1.5 million Canadians trying to cope with a disability they have acquired through no fault of their own, we have a brain trauma problem that is the most common, most expensive, yet most preventable of all disabilities in the industrialized world.

Silos of solitude is not a fictional concept. Competition for resources is a natural phenomenon but can effectively compromise the collaboration that would achieve positive results. The frail, the mentally challenged, the different, the homeless, are our brothers and sisters, our mothers and fathers, our very own children. Why can’t we, as a mature nation, take a step back, review our options and make the decisions for our future wellbeing that will allow us to be masters of our own fate. Otherwise, we will never be able to make that great leap forward.

The never‐ending FASD journey…

(Thought this was worth repeating…)

When we started, we thought we were just another incompetent pair of parents. As it turned out, we had been counseled by professionals who were just as ignorant as we were. When Bonnie Buxton saw a program on CBC of interviews with families who had adopted children just like our daughter Colette, we suddenly realized that there was something beyond our own lack of understanding. Our problem was Fetal Alcohol Syndrome.

That was 1995 when we called it FAS/FAE. FAE or Fetal Alcohol Effects was considered to be FAS Light because there was no obvious facial dysformology. We know that FAE, better known as Alcohol‐Related Neurodevelopmental Disorder (ARND), can be even more debilitating than FAS. We couldn’t find anyone to give us a proper diagnosis until we worked with Dr. Ab Chudley in Winnipeg who determined that Colette had ARND. That’s when Bonnie wrote the article, Society’s Child for Elm Street Magazine that got more reaction than anything else they had published.

During those early years we realized that many people who should have known about FASD, didn’t. Politicians, teachers, doctors, nurses, social workers, lawyers, police and judges had reached their professional levels without any exposure to the most common, most expensive, yet most preventable of all mental disorders in the industrialized world. Then we had the notion that if we did some kind of media event on the ninth minute of the ninth hour of the ninth day of the ninth month of 1999, all those nines would come together to remind everyone that women should avoid alcohol during the nine months of pregnancy. With the Internet, the idea took off and thousands of communities around the globe celebrated the first FASDay and more have been doing so ever since.

We realized that families needed to work together to make change happen and not stay in our isolated silos. Since those early days there has been much research, many conferences and steady, but sporadic, media coverage about FASD. Relying on occasional donations and without core funding, FASworld Canada delivered workshops and interviews wherever we could. When we offered parent support groups and other organizations to work together under the FASworld umbrella, we were told that we were doing so for our own promotion. Some referred to this as “the Tall Poppy Syndrome” and Brian and Bonnie needed to be cut down.

However, we have been glad to collaborate with many organizations that would work with us, and we have sustained our FASD work over the past 22 years without personal compensation. We happily report that Bonnie’s book, Damaged Angels, is still in print and continues to help families cope.

Recent startling research appears to indicate that the prevalence of FASD in Canada is at least four times larger than we had assumed. In spite of the shortage of diagnostic services, we’re looking at 1.4 million Canadians — over five hundred thousand in Ontario — who are costing society billions annually. Yet, awareness of the damage that Prenatal Alcohol Exposure can do has only increased slightly. Binge drinking among fertile women has grown, as they appear to want to behave as intemperately as some men.

Our experience with families and the Canadian establishment has convinced us that all the brochures, posters, workshops, conferences, media stories and research are not doing the job. In most cases, FASD is not recognized officially. Professionals graduate without any formal training about Prenatal Alcohol Exposure and the resulting devastation of FASD. Many youth are getting mixed messages from people who should know better and persist in the mythology that “light” drinking won’t hurt. This is why our children need realistic information about FASD starting in the primary grades.

Today, beverage alcohol is an accepted, if not welcomed, part of our social fabric. Although alcohol is a neurotoxin it is never labeled effectively as any food product or substance that could be a problem for health. The alcohol industry, by deliberate design, has avoided responsibility for identifying its products and educating users to the detriment of society and at a horrendous cost in dollars and grief.

FASworld Canada (SAFmonde Canada) has gained an international reputation, well known across our country and has federal charitable status. If family support groups would be interested in working under the umbrella name of FASworld, we would welcome that. In fact, some support groups already have affiliated themselves with FASworld and continue their work independently.

Of singular importance is the fact that Bonnie and I need to retire from active management of FASworld. For health reasons, Bonnie is unable contribute her time and I want to pass the care and enrichment of the FASworld mission to a more energetic and ambitious individual or team. Although I plan to keep working with families and to support them any way I can, the management of this charity should be in fresh, resilient and enthusiastic hands for the betterment of babies to come.

Call me. Let’s talk.

Brian Philcox Chairman
FASworld Canada