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Andrew Kavchak
ParticipantHi Folks,
Well here’s something that seems new…sort of. One element of the study of public policy is the structure of the bureaucracies that are supposed to be doing something. It is a frequent event in Ottawa that a new Deputy Minister (DM), or Assistant Deputy Minister (ADM), or Director General (DG), etc. will assume a position and one of their first acts will be to “reconfigure” the divisions which report to him or her, and attempt to justify the “reorganization” by making some reference to greater efficiency, effectiveness, etc. Sometimes yes, sometimes no, but one thing for sure….chances are that the next DM, ADM or DG will feel compelled to change it again….and who knows? Maybe they will inadvertently revert the org chart to what it looked like before!
Anyways, it seems that in PEI a provincial politician has been told enough times by parents of kids with autism that they have to lobby several ministries to get some service(s) and they are (perhaps) a little tired of it (presumably after being told “that’s not my department” a few too many times). Accordingly, this PC MLA has proposed that the province create an “Autism Secretariat”. The CBC is reporting that Sidney MacEwen “…would like to see a single cabinet minister responsible for overseeing all government services and supports for Islanders with autism spectrum disorder.”
https://www.cbc.ca/news/canada/prince-edward-island/pei-sidney-macewen-autism-secretariat-1.4917760
Well, unlike Mike Lake’s recent “Canadian Autism Partnership (CAP) Project” proposal which involved creating a new bureaucracy outside of government with no legislative mandate or authority, this Autism Secretariat proposal would be a reconfiguration of the existing bureaucracy dealing with autism programs and services and centralizing the ministerial responsibility in one Autism “Czar” Minister.
I hope the promoters of the CAP thing and politicians in other provinces are taking note. Will any express support for the idea? Will any of the national autism organizations (e.g., Autism Society of Canada, Autism Speaks, CASDA, etc.) assess the proposal? If it is a good one, will they draft a summary report proposal (as was done with the CAP thing and which some people obviously have experience), and use it to lobby other provinces to pick up on the idea? It’s nice to sometimes reflect on the possibilities…
ParticipantHi Folks,
Here’s something different. Over the years one the big obstacles that our community has faced in getting some leadership from the federal government has been the often-repeated argument that the autism file is a healthcare delivery issue which is entirely provincial and not federal jurisdiction (notwithstanding the legal, financing and contractual contexts, e.g., “health accords”, etc.). However, every once in a while we see federal departments and agencies stepping pretty close to the limits of their mandates, and sometimes going beyond them in a demonstration of some degree of “doing good for Canadians”. Whenever such initiatives are taken, I always wait to hear the chorus of politicians denounce the move as being inappropriate given our constitutional division of powers, but most often hear nothing but silence.
Case in point… on November 20, 2018, two MPs made rather interesting statements about an initiative of the “Farm Credit Corporation” and “mental health”.
“Mental Health
<b>Mr. Jati Sidhu (Mission—Matsqui—Fraser Canyon, Lib.): </b>
Mr. Speaker, agriculture is an exciting and dynamic industry that is full of opportunities, but it is not without challenges. I rise today to recognize the Minister of Agriculture and Agri-Food and Farm Credit Canada for raising mental health awareness within the farming industry. My riding of Mission—Matsqui—Fraser Canyon has a high concentration of farmers and it is important that both individuals and families receive support throughout stressful situations. I am pleased farmers will have improved access to wellness resources, with the FCC launching its mental health strategies guide. Mental health issues can affect anybody. It is important to have these discussions. I am proud to join my colleagues and the agricultural community in removing the stigma surrounding mental health.Mental HealthMr. Speaker, I rise in the House today to talk about an important issue facing Canadian farmers, mental health. I am the granddaughter of a cattle farmer and well know the pride, strength and independence demonstrated by our farmers. I have heard first-hand from farmers in my riding of New Brunswick Southwest of the uncertainty, unpredictability and stresses of weather, market forces and wanting to pass the family farm on to new generations. The feelings of anxiety, stress, depression and isolation are not easy to share. It is time to break this barrier of stigma. There is no question we need our farmers. I am pleased the agricultural committee is completing its investigative study of the mental health and physical well-being of our farmers.”This is interesting. The FCC is raising mental health awareness. The FCC provides some resources, including a “mental health strategies guide”. It is contributing to the removal of mental health stigma. And…it turns out, the “Agriculture Committee” is completing an investigative study of the mental health and physical well-being of Canadians who farm for a living.For those who are interested, the FCC’s mental health publication is available here:I don’t doubt for one minute that farmers suffer stress. Much of what they do and their success (or failure) is dependent on things that are beyond their control like weather, interest rates, insects and crop diseases, insurance programs, market demand and prices, etc. But what is the mandate of the FCC? It is outlined on their website at:“FCC’s mandate is described in the Farm Credit Canada Act as follows:<i>The purpose of the corporation is to enhance rural Canada by providing specialized and personalized business and financial services and products to farming operations, including family farms, and to those businesses in rural Canada, including small and medium sized businesses, that are businesses related to farming. The primary focus of the activities of the corporation shall be on farming operations, including family farms.”</i>I searched the words “mental” and “health” on the above-noted webpage where the FCC elaborates on its mandate and role and neither words show up. So…since when is “mental health strategy” a component of “business and financial services and products”? I don’t hear any government or opposition MPs raising an objection on jurisdiction. I have not come across any statements of objection from the Minister of Health that “mental health” is their department’s file and not that of agriculture. So it must be OK, right?Well, as a parent of a child seriously affected by autism, I can say with no hesitation that my family’s life and that of many other families that I know in a similar situation is also loaded with stress. Even after all these years stress is still part of my daily existence and dealing with it is part of my daily challenge. But after hearing all the opposition to federal government action on autism from people like Mike Lake, etc., I never even contemplated the idea that Health Canada or the Public Health Agency of Canada would create and issue a “mental health strategy guide for parents of kids with autism” that would include, among other things, tips on how to naturally boost your serotonin levels. While the government does not seem to be going around handing out free anti-depressants to farmers, at least they recognized an issue and put something in writing that is supposed to be helpful. And on the autism file? What? Still waiting…On a different topic, “National Child Day” was the subject of a few speeches in the Senate this week. While no reference was made to autism, there was a reference to reports and a recommendation to create a “commission for children and youth”. I wonder if such a commission would consider whether access to ABA treatment was a “right” for children who need it.ParticipantHi Folks,
Are you ready for this?
Another autism website!
But this one is different – it won an award, which was a few thousands of dollars directed to an autism charity.
The “Canadian Underwriter”, some sort of insurance industry news source (not to be confused with Canadian insurance “overwriting” – sorry I just could not help it), published a story today indicating that two brokerages in Ontario combined forces to help fund an online platform “that provides support and resources to the autism community” (https://connect.autismspeaks.ca/home). The story is here:
Does that sound familiar? Twice this year the federal government announced the awarding of “more than $10 million” to two autism organizations to create a website that would do the same thing. As far as I know, there is still no website and no announcement of a launch date. The Auditor General of Canada issued a report his week in which his office evaluated the efficiency of numerous government departments and programs. I wish someone would take a look at these autism budget provisions and report on what has happened. Where did the money go? What has the Canadian taxpayer got for the money spent? It would be interesting to contrast these two projects. How much money did the two brokerages spend to support the creation of the Autism Speaks platform? How long did that take to get up and running? Ah….I can hear it now….some bureaucrat suggesting that maybe the government should fund the creation of another autism website with a mandate of reporting on the features and effectiveness of other autism websites…
On a completely separate note, it was brought to my attention that on Mike Lake MP’s “twitter” thing that he “retweeted” a “tweet” from the President of York University a few days ago in which she thanked him for his recent visit to the university “…to share the story of your son Jaden and his experience with autism. We are excited that you will be back on campus in the new year to continue discussions about opportunities & challenges for families living with autism.”
Gee, that will be interesting. I wonder whether Mike Lake has ever made a speech on the topic and posted the text on his website so that we can all have a good idea of what he perceives as being the challenges and how they should be tackled by governments. What will Mike Lake say about the challenges faced by the autism community?
Would he consider the lack of autism treatment in Medicare a challenge?
Will he talk about that and what should be done to improve the situation?
Any chance he might identify MPs who refused to table petitions on the subject (as he did when he gave me back the signed sheets I gave him) a problem?
Or what about parents of autistic children who get elected to the federal legislature, and use their position to talk about their child and family love every year on autism awareness day, but rarely, if ever, take advantage of their unique position to seriously hammer away at public policy gaps and campaign for federal leadership on the file?
Or what about MPs who vote to kill Bills that would require the creation of a National Autism Strategy? I remember once getting a letter from one MP who said something along the lines of “See? Even a parent of a child with autism voted against this autism Bill” (referring to Mike Lake) so how can I be expected to vote for it?
I suspect his discussion of “challenges” won’t include any reference to ABA treatment in Medicare, etc. Yet, I’d be willing to bet that the President of York U, of the professors in the disability studies department will still tweet out messages thanking him for his insights and leadership and outstanding advocacy for autism and that he’ll retweet it on his account (or whatever it’s called).
ParticipantHi Folks,
OK, can we be brutally honest without offending anyone? Can we be objective in trying to evaluate the impact in recent years of something that started a few years back?
On Tuesday, November 6, 2018, in the Senate, Jim Munson spoke during the third reading of his Bill S-244 “An Act Respecting Kindness Week”. Yes, that’s right, the Senator would like an (by law) a week to be formally designated as “Kindness Week”. You may recall that about ten years ago the UN declared a day in April every year to be “World Autism Awareness Day”. Senator Munson then tabled a Bill in the Senate to declare the same day to be an autism awareness day in Canada. To me, this is all soft stuff that is merely a first step, or a means to an end, but certainly not an end in itself. Yet, I remember years ago speaking with the former Executive Director of the Autism Society of Canada (ASC) who told me at that time that the laws on charities prevented the ASC from engaging in lobbying, so they were content to just do “awareness raising”.
So what has the past decade or so (a little less in the context of Senator Munson’s autism awareness Bill) achieved? Well, during his speech yesterday Senator Munson made the following observation:
“When Bill S-244 receives Royal Assent — I hope that will be soon — Canada will be the first country in the world to have a kindness week in law. Let me tell you, honourable senators, briefly, it does matter; it really does matter. Sometimes people say, “Why these weeks, why these days, why should they matter?” Well, because people matter. We all matter. When I had my own private member’s bill on Autism Day, April 2 and this country legally recognizing it — and it took a few years to get that bill through here, but it did pass. Through that, it motivated governments to have chairs of excellence. The Conservative government of the day put a chair of excellence in on autism. There were funding programs and the Canadian autism partnership happened. Schools across the country raised flags and children were being taught your friend beside you just thinks a little differently. He’s not you, but don’t judge him differently because it’s him or her. It multiplies across the country. I think these acts really do matter.”
Chair or chairs of excellence? (Which is it? Where?)
Funding programs. (Like what? Autism treatment under Medicare? Where?)
Canadian autism partnership “happened”. (No it did not. A “business plan” was developed but the government never approved it and it is now relegated to recycling bin.)
Schools raised flags. (Yes, indeed. I met my local city councilor many times and tried to impress upon him the need to improve services to the autism community. During the recent municipal election he came to my door while canvassing and told me that he was at an autism flag-raising ceremony… I was unsure whether he expected me to vote for him because of that).
Children were being taught that your friend beside you just thinks a little differently. Oh boy. That one’s probably the most painful one to read. Is that what autism and autism awareness is all about? “Just thinks a little differently”? Well, let’s be clear, for the high functioning, that may be one way to get other kids in the class to better understand their classmate’s unique behavior. But for the low functioning, that’s not helpful. In fact, it is seriously distorts reality and is somewhat offensive. Low functioning children on the spectrum need some serious help, and suggesting it is just a matter of “just thinking a little differently” minimizes and avoids a very serious complication and problem. If that’s what “autism awareness” has culminated in, then from my perspective it is not only a failure, but contributed to the obstacles and challenges that parents of low-functioning kids face in trying to educate politicians and public policy decision-makers about the needs of their community. So often one sees headlines that suggest progress is being made, and then so often one is reminded that one is stuck on an island and ain’t no one’s coming with the rescue ship because “just thinking a little differently” is…just fine. While I wish Senator Munson good luck with his kindness bill, how about a “Can We Move Beyond Inadequate Awareness and Now Get Serious on Autism” Bill?
ParticipantHi Folks,
One of the strange things about human behavior, especially in the realm of politics, is how certain ways of thinking are considered OK in some circumstances, but not even considered in others. For example, why is it that certain government approaches (which reflect a certain way of thinking) are expressed, promoted and undertaken to address certain health issues, but not other, most notably autism?
Last month was “autism awareness and acceptance month”. My memory may be getting short, but I don’t recall any memorable speeches by MPs in the House, not even one related to autism by the popularly designated “national autism advocate” Mike Lake (incidentally, he recently re-tweeted a tweet by someone who thanked him for “advocating for those Canadians who need a strong voice” and apparently brings the lady who tweeted “to tears every time he speaks” – ironically, I also felt like crying every time I met Mike Lake or heard him speak, but for different reasons as previously outlined on this board).
However, this month is “Diabetes Awareness Month” and two speeches were made in the House yesterday. One conservative MP made a statement and concluded by saying “Together, we can raise awareness and help eradicate this disease.” Then a Liberal MP spoke and stated “lt is clear that Canada needs a national strategy to address the growing challenge of diabetes, a strategy like Diabetes 360°. I invite all members to join us tomorrow night for a reception to hear from leading researchers on groundbreaking new treatments, like beta cell replacement and islet transplants, to help Canadians living with diabetes. Canada gave insulin to the world, and if we work together, we can defeat diabetes.”
Imagine that….one disease, the treatment of which is already provided for under Medicare across the country, requires “eradication”, a “national strategy”, and “defeat”. Yet, when it comes to autism, I cannot recall any MP on either the Liberal or Conservative side calling for a “National Autism Strategy” (certainly not when their party was the government), and one never seems to hear any MP speaking about the need to eradicate or defeat autism.
ParticipantHi Folks,
Every once in a while one comes across some interesting proposals that are recorded in the transcripts of what is said by our MPs in the House of Commons. While some ideas sound really good in some contexts, one wonders why they are not considered feasible (or even worthy of mention in others). One example is what was said by one conservative member in the House yesterday (Monday, November 5, 2018).
“Addictions
<b>Mr. Glen Motz (Medicine Hat—Cardston—Warner, CPC): </b>
Mr. Speaker, communities across this country are grappling with proposals for supervised consumption sites in an effort to reduce the negative impacts of drug addiction and abuse. We all recognize the important public health benefit of keeping people safe and minimizing death, disease and injury, but there has to be room for different harm reduction strategies. I recently visited Vancouver’s Downtown Eastside and saw what was really happening first-hand. I talked to addicts, heard their stories and listened to what they said. This is a failed social experiment. It is a crisis that is not getting any better. While there, I met with members of the Odd Squad, a charity run by serving and retired police officers who volunteer their time to educate youth and the community about substance abuse, and more importantly, about approaches to avoid addiction in the first place. Governments must ensure that appropriate funding is directed toward detox and treatment-on-demand facilities, plus organizations like the Odd Squad, to give hope to the hopeless. The human cost is far too high to refuse to consider altering the current course.”
The irony here is surprising. For autism, a disorder that people are born with and did not acquire through any choice of their own, there was never any mention by any conservative MP (or Liberal or NDP for that matter) that “governments must ensure appropriate funding and the availability of autism ‘treatment-on-demand'”. Yet, for drug addicts, it is worth fighting for and raising on the floor of the House. I remember in grade 7 of my public junior high school that we had a class called “Health”. I remember two of the topics that took up a lot of class time. One was sex and the problem of VD, and the other was drugs and the problem of addiction, etc. Anyone who was in that grade 7 class and subsequently took drugs could not claim that their subsequent addiction was a surprise. Nonetheless, I’m glad to see that there is a conservative MP who believes funding should be made available for “treatment-on-demand”. But why should it be only for drug addicts? Why not for kids who are born with a disorder like autism which can also be treated? Huh?
ParticipantHi Folks,
A few recent developments and thoughts to share…
The autism community needs services, so it is entirely normal and appropriate that some people would make a living while providing much-needed services to the community. However, when people who assume the positions of “executive director” of an “autism charity” are criminally charged with “theft, fraud and forgery”, one is bewildered by how some people can take advantage of other people’s misfortunes to (allegedly) criminally line their pockets. The CBC story about the events in PEI is here:
https://www.cbc.ca/news/canada/prince-edward-island/pei-stars-for-life-smith-court-1.4882569
Speaking of deception, did anyone catch the federal government’s press release of last week relating to spending on autism? It is available here:
The press release, dated October 22, 2018, includes the following statement: “Today, the Honourable Ginette Petitpas Taylor, Minister of Health, announced more than $10 million for the Pacific Autism Family Network and the Miriam Foundation to develop the Autism-Intellectual-Developmental Disabilities National Resource and Exchange (AIDE) Network, a national website and online resource centre for Canadians.”
Good grief! Can you believe that? The allocation of the same funding was previously made when the federal government’s 2018 budget was announced in February! In fact, the press release on the Miriam Foundation website of February 28, 2018, stated at the time that the government was investing the funds in the present tense (government “invests”). See:
There is absolutely nothing new in this most recent repetition. However, it is “Autism Awareness and Acceptance Month”, isn’t it? So the government has to make an announcement, doesn’t it? And since probably no one remembers the previously announced budget allocation of eight months ago, why not recycle and rehash the same stuff over and over again and make it sound like the government is engaged, doing something, and deserves to be re-elected. It is absolutely stunning that eight months after the initial announcement the government would shamelessly “re-announce” it, and not even provide a link to the website in question or even a status update on its “construction”. Instead, the press release is entirely future tense oriented “will provide”, “will support”, “will give”, “will see” etc. And the quotes of the two primary recipients of the money provide no information either about when or where this reliable, quality and trusted resource “will be” available. Just be patient and wait some more.
On a related note, I wonder whether there are any politicians who “advocate” for autism who have generated something like an “autism manifesto” which would outline the public policy objectives that they would like to see implemented, whether it is the issuance of a government declaration, or implementation of some sort of government initiative or program, some sort of budget allocation, or even legislative enactment. There are a number of politicians, both provincially and federally, who have over the years claimed to represent and promote the interests of the autism community. Yet, I recently received a message from a fellow parent who wishes to remain anonymous, who informed me that he sent a message to Mike Lake asking him what specifically does he advocate for and inquiring about the nature of the discussion that he recently boasted about on his Twitter account regarding his (Mike Lake’s) recent meeting with Ontario government MPPs in which they supposedly discussed what the provincial government could do to improve the lives of people with autism. This fellow parent informed me that he sent emails to both the provincial MPP who issued the original tweet about the discussion with Mike Lake, and Mike Lake himself, to ask “what specifically did you discuss?” From the Ontario MPP’s office there was no acknowledgement of receipt or response. From Mike Lake’s office there was an email suggesting that Mike Lake would be willing to talk on the phone, but the request for a response in writing was ignored, apart from a link to a Global News story about Mike Lake’s efforts to get funding for his “Canadian Autism Partnership” project.
What this means is that if our community is interesting in knowing exactly what politicians who claim to be our supporters actually stand for, we have to collate the relevant passages from any speeches, letters or descriptions of actions taken (e.g., tabling a Private Members Bill, etc.). While in some cases, such as Senator Munson, there is an accumulated body of speeches and reports that occasionally make reference to specific public policy issues, there are other politicians who make such exercises much easier because in fact they rarely say (or write) anything concrete or specific about what governments should actually do (that’s what public policy is), notwithstanding their frequent speeches about “autism awareness” and acquired reputations. Perhaps it is time for the community to ask supportive politicians to put in writing what they support and what they are willing to fight for. How can one understand a politician who says “I am an advocate for your cause (vote for me!)”, but is not willing to put in writing a meaningful (comprehensive) statement of what they support and what they advocate for? Is that misrepresentation perhaps in the eyes of some people? Perhaps it would be worthwhile to ask these advocate politicians to draft an autism manifesto of sorts and attach their name to it. That way we can have a better idea of who supports what. And if the “manifesto” is full of “raising awareness” and contains no reference to any public policy improvements, then we at least will have a better idea of who really stands for action and who does not. Maybe that’s why some politicians don’t want to put anything in writing, not even a few bullet points in an email!
ParticipantHi Folks,
Here’s an update and an urgent call out to all those who are able to attend an “autism round table” at the Fraser Heights Community Centre on November 15 between 7 p.m. and 9 p.m.
Here’s the background: as you may recall, the Liberal Party of Canada held a policy convention in 2016 and one of the resolutions that was approved was a resolution to include ABA treatment under Medicare. The resolution was approved and the wording can be found here:
https://winnipeg2016.liberal.ca/policy/medicare-coverage-for-the-treatment-of-autism/
The Liberal Party of Canada has a “policy committee” and last year they set up a working group to draft a report on its implementation. I saw a draft of the report earlier this year and thought it was weak and “politically correct”. I also thought it deviated from the resolution too much for my liking and that it was not really a document that was likely to “enlighten” very much those who may be unfamiliar with autism. Nonetheless, the report was given to Ken Hardie, MP, who is apparently the Liberal Party’s “caucus liaison” with the policy committee.
About a month ago I wrote to Ken Hardie and asked him “what’s happening with the report?” I received no reply so I followed up and asked the question again. Well, guess what? I got an answer! This is what he wrote to me today:
“Here’s a quick status update: the Working Group report has gone to the Liberal Party’s national platform committee, which will look at ways to get the issue reflected in the next campaign. As it happens, I am the liaison between the Party’s platform committee and the national caucus, so I intend to push the issue to get something included. While the government’s measures so far have been helpful, they have only scratched the surface when it comes to financial, therapeutic and respite relief for families. I have to say that the magnitude of the issue is staggering, and I’m not sure how far toward meeting the intent of the 2016 resolution we’ll be able to go. As such, it might be wise to consider options. I’ll be holding a round table on autism at the Fraser Heights Community Centre from 7 to 9 PM on November 15<sup>th</sup> to get input and advice as to what measures could improve things for families. I hope you can attend and bring your thoughts.”
So the new “pressure point” for lobbying is at this “national platform committee” which is apparently forming an election platform for next year’s election. I’m nowhere near the Fraser Heights Community Centre, but I hope that all of you who are able to go will try to attend and deliver a clear message: the policy resolution was good, it was approved, we want it and our kids need it. Please incorporate the resolution on a “as is” basis into the party’s election platform.
While Mr. Hardie seems to be under the impression that the government’s measures to date “have been helpful”, I don’t share that opinion as I don’t know how the funding of a ghost website (at least, one that I have been unable to find whenever I searched for it) is helpful to anyone in our community. Similarly, I am not sure what he is referring to when he makes reference to “scratching the surface” when it comes to financial, therapeutic or respite relief for families. In fact, I don’t think I have come across any Liberal Party statement that ever make reference to those three things. It is nice for him to recognize that the magnitude of the issue is staggering, but if the Party is going ahead with a “National Pharmacare Program”, then please don’t tell me again that “autism is different”. You know what they (used to) say….”when the going gets tough, the tough get going”. Are we to interpret Mr. Hardie’s warning about the staggering proportions of our community’s problem is such that we should not expect anything? If so, the MPs in the Party are obviously not “tough enough” and perhaps it is a good thing there is an election coming up! We need tough people to represent us, not the excuse seekers. Good luck to all those who attend and speak up! May the Force be with you!
ParticipantHi Folks,
Here we go again… another example of how autism “is different” and necessarily necessitates “a different” approach than practically any other problem. In other words, from some politicians, the message is that they can do something for other causes, but when it comes to autism, their hands are tied. One example that I’ve previously discussed is the way the federal Conservatives (especially autism “national advocate” extraordinaire Mike Lake) would say that autism “is provincial”, but when it came to a national securities regulator, even though the constitution is pretty clear (it’s a section 92 responsibility) which has been affirmed by a century’s worth of jurisprudence and a recent Supreme Court of Canada decision, the federal Conservatives still went ahead and tabled a Bill to create a National Securities Regulator before the last election (and this in spite of opposition from a number of key provinces!). In other words, where there is a will, there is a way.
As you all know, every day in the House of Commons the MPs have an opportunity to stand up before Question Period and have one minute to make a “statement”. They love doing this because they can copy it into their householders and parade it as proof that they are concerned about an issue and take a stand or something. Mike Lake always stands up on World Autism Awareness Day and makes a statement. It always has to do with his son, and how much his family loves his wonderful son. I’ve often remarked that his speeches on those occasions are totally devoid of any public policy discussion. Well, contrast that with the statement he made yesterday on “World Polio Day”.
Hansard, House of Commons, Wednesday, October 24, 2018:
“World Polio Day
<b>Hon. Mike Lake (Edmonton—Wetaskiwin, CPC): </b>
Mr. Speaker, today is World Polio Day, a day to shine a spotlight on international efforts to end polio. On the subject of global polio eradication, Nelson Mandela said it best, back in 1996: “[O]ur aim is not merely to reduce the numbers afflicted – it is to eliminate the disease completely. No country can be safe from this disease until the whole world is rid of it.” Today, we are closer to that goal than ever, and Canada has played a leading role. In fact, three Canadian prime ministers, Jean Chrétien, Stephen Harper and the current Prime Minister, have been recipients of the Rotary Foundation’s Polio Eradication Champion Award. This is a testament to Canada’s enduring commitment to this fight, working with equally dedicated partners, like Rotary International, the Bill and Melinda Gates Foundation, Global Citizen, UNICEF and RESULTS. Here, it is all too rare for us to find common ground, but in uniting around the efforts of the Global Polio Eradication Initiative, we have done so, and the world is a better place for it. Now we need to finish the job, once and for all.”Interesting, eh? No discussion of any individual victim of polio and what a wonderful person he or she is. No discussion of the need to accept or raise awareness. No discussion of Mike Lake’s life journey learning to live with the disorder/disease in a family member or friend or stranger. No discussion of his or his family’s evolving perception of the disorder and its impact on people affected by it. Nope. Instead, it is repeated references to ending polio, eliminating polio, eradicating polio, and getting the world “rid of it”. It is about our government being champions in the global eradication effort and our PMs being recognized for their efforts in that regard. There is an “initiative” and we all, in a non-partisan manner, unite around the effort. The politicians have done it before on this file, and will continue until the job is finished “once and for all”.Just as a reminder and to put some contrast and context in this, take a look at Mike Lake’s last “Autism Awareness Day” statement from the Hansard of Wednesday, March 28, 2018:“AutismMr. Speaker, April 2, World Autism Awareness Day, will mark 20 years since my son Jaden’s diagnosis. Helen Keller once said, “Life is a succession of lessons which must be lived to be understood.” These words are very powerful for me. For example, two years ago, Jaden and I had a great day speaking to 15,000 kids at WE Day in Saskatoon. Our flight home was delayed, and suddenly Jaden got really sad. Tears streamed down his cheeks. We found a quiet place at an empty gate, and I just held him, my 20-year-old son, for half an hour, until he felt better. I reflect a lot on what I learn from Jaden. Though he struggles to articulate why he feels what he feels, he expresses how he feels very openly and clearly without words. For Jaden, much more important than the words I speak is the simple fact that I am there. The life we live is never exactly the life we expected, but the unexpected life is where the real learning takes place.”Instead of talking about the urgent need to engage in an “initiative” (and even participate on a global scale) to treat and ultimately find a cure for autism, and to recognize those who have championed the cause and made some meaningful contribution, Mike Lake talks, as usual, about: Jaden, life being a series of lessons, powerful words for him, a specific episode where Jaden was crying, holding his son, feeling better, reflection, and how Jaden expresses his feelings. Yes indeed, life is never as we expected, and I can confirm that political speeches from some sectors have never met my expectations either. Of the numerous things that I find somewhat perplexing about the contrast in Mike Lake’s speeches regarding these health issues, is the reference in the polio speech to uniting around a cause. Why not engage in the same non-partisan behavior in relation to autism? Instead, as I’ve documented on this board so many times over the years, the criticism of others (e.g., for not voting for his motion) or the silence (e.g., not commenting in the House on the lack of any meaningful provisions for autism in the budget) all have deeply political and partisan traits. One would have to be naïve to not recognize that the MPs always calculate and include the partisanship factor when determining how to deal with any autism issue. It is at least a relief to know that should polio ever erupt into an epidemic in Canada in the future that we may expect some cooperation among our elected representatives.ParticipantHi Folks,
A speech was made about autism in the House yesterday (Oct. 19, 2018). It makes reference to “professional race car driver”, “reality simulator” and “first hand experience” of what it is like to live with autism. Here’s an idea….what if the Autism Societies canvassed the communities across the country to see if there were any autism families that would be willing to have interested VIPs (e.g., politicians, government officials, public policy influencers, etc.) visit their homes and get a glimpse of what a typical day with a member of the family on the spectrum is really like (tantrums and all, as opposed to racing cars)? Would that not provide an “eye-opening experience” that would raise awareness among those who are in a position to do something about the challenges faced by our community?
For those who may be interested in this story, there is a video available here (http://thenewswheel.com/meet-austin-riley-canadas-first-autistic-racecar-driver/). It is nice to know that some families are in fact able to find that “niche” at which their child is good, and able to help their child excel at that activity. Good luck with the professional car racing career. But getting back to the “reality autism experience”, my concern with speeches like the one below is that the politician makes reference to “unforgettable and eye-opening experience”, but in what way? What was the “take away” or “lessons learned”? That everything would be all right if kids with autism were just given a chance to follow their dreams? Or is the unforgettable experience one that has prompted the politician to add autism public policy issues to her agenda and “to do” list? Is there anything specific that the autism community can follow up with the politician about to get some momentum going in terms of government initiative on the file? Regrettably, it does not sound like it. So was this another “Rainman” story which can be expected to prompt strangers in the future to tell me that I’m so lucky my son has autism? A truly “unforgettable” experience?
“Autism
Ms. Jennifer O’Connell (Pickering—Uxbridge, Lib.):
Mr. Speaker, I rise today during Autism Awareness Month to recognize the Riley family, who are members of my community, for their advocacy of autism awareness. Austin, a three-time racing champion, is the first professional Canadian race car driver with autism. It is through sharing his story that Austin has been empowering those with autism to follow their dreams, while encouraging others to learn more about it. In addition to sharing his story, Austin and his family have been touring the country, sharing the autism reality experience, a reality simulator that provides a first-hand experience of what the world is like living with autism. Having personally taken part in this simulation, I can say it was an unforgettable and eye-opening experience. I would like to thank Austin, Jason and Shane Riley for this opportunity and their continuous advocacy and efforts to make Canada and our communities a more inclusive place for us all.”
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