Opinion by Consumer Advocate Tim Bolen
This is the 12th article in a series focusing on the fact that Autism is a social issue that could have been, and should have been, solved a long time ago.
I’d heard about ” the backstabbing” among Autism Leaders. I’d even seen a few examples, and I wrote about them, creating, with Jake Crosby, a huge argument in the Autism world.
But, I was actually under the impression that that activity was restricted to just a few people in a few self-centered groups.
Boy, was I wrong…
I’d heard the stories about autism alliances shattering – groups that formerly worked together, at the end of a project, literally hating each other, doing whatever they could to damage each other, even blocking what the others were trying to accomplish. Those stories got higher attention from me. I kind of wrinkled my brow – asking the question “Whoa! Do they REALLY do that to each other?”
Yes, they really do. And they do it without even considering the consequences.
The “backstabbing” stories explain certain things – like why Autism Leadership can’t even come close to Situational Analysis; starting with “Identifying Problems,” and wouldn’t have the faintest idea how to go to the next step – “Identifying Possible Solutions.” Why? You can’t get them into the same room for a discussion because they are all carrying knives, so to speak, to get even over the last time they were together. It’s that bad.
Stupid me – I live in the Health Freedom world where, although there are difference of opinion, we have meetings to get things done. I mean why not? So, I said to my self “There’s got to be a way to get these people to get together, sit down, and make a plan.”
Boy, was I wrong…
It is simply unbelievable…
The situation gets worse, not better. In an earlier article I’d said:
In my “Calling For Batman…” article, I pointed out a pattern of poor tactics, and lack of a general strategic plan, by Autism Leadership. I mentioned a “Summit Meeting” between Autism Leadership and key members of the Health Freedom Community. I said:
“I offered to bring to that meeting at least ten significant, influential, members of the Health Freedom Movement to assist in the research and preparation of that Plan. I offered to coordinate the situation analysis heading toward that Plan using a Crisis Management situation analysis.”
I have been in contact with a good many of those “significant, influential, members of the Health Freedom Movement” I offered to bring, and the consensus is “Yeah, let’s do this…”
But, on the opposite side of the table, the Autism Leadership, there is only emptiness. I haven’t heard a word. In fact – the opposite. There is actually a group that wants to prevent a “Summit Meeting,” claiming that THEY have all the answers, and they have no intention of even being in the same room with any others, neither in the Health Freedom world, and certainly not the Autism world.
I kid you not…
Let’s talk about the people that did that just below.
My articles about “Autism Leadership” created flames in the Autism world…
I get LOTS of communications about my “Autism Leadership” articles. All kinds of reactions. I wasn’t surprised to be contacted by the “Mom’s Against Mercury” duo Angela Medlin and Amy Carson. Their story, told to me, about Autism Leadership dysfunction, was, at the time, engaging. They were the ones who told me the details of “what really happened,” according to them, at the “Green Our Vaccines” walk/rally, in 2008, described below. And, what they were telling me was interesting for a variety of reasons.
The “walk/rally” situation was interesting to me because it is a tactic NOT often used in the Health Freedom community. Shorty before talking to the duo I had attended a meeting in Maryland hosted by a philanthropic group who was, right then, being solicited by Candace McDonald of Generation Rescue for $75,000 seed money to, once again, put on a “walk/rally,” this time in Battery Park on Manhattan Island, again, featuring Jenny McCarthy.
Both Carson and Medlin had a lot of negative things to say about that potential event and indicated to me that that it was “not about autism but just another promo for Jenny McCarthy.”
I set up a time for them to talk to the philanthropic group. Those conversations apparently resulted in a denial of the funding to Generation Rescue.
When you describe “Autism Leadership” as “DYSFUNCTIONAL” spell the word in all capital letters…
Ready? Here it comes…
From what “Moms Against Mercury” Amy Carson and Angela Medlin tell me the last big event Autism Leadership groups got together to put on put on was in 2008. Seven years ago. It was a “walk/rally” called “Green Our Vaccines.” About eight thousand people attended in Washington DC. Many different groups participated.
Jim Carrie and Jenny McCarthy were clearly the headliners. The event drew a fair amount of media – but not much else. They all bought green tee-shirts, they walked around, yelled into bullhorns, but… Nothing good came of it. There didn’t seem to be a plan of what to do next.
In the end there were very good reasons why it was “The last big event Autism Leadership groups put on.”
I’m surprised there wasn’t blood everywhere.
What happened? Well, first of all, it appears, EVERY group claimed that THEY, and they alone, were responsible for the rally’s success. (such fun people to work with).
Then, the BIG RIFT occurred. It seems that at the beginning of the rally’s organizing process Jenny McCarthy was affiliated with TACA (Talk About Curing Autism). But, I’m told, just as soon as the rally was over, McCarthy jumped over to Generation Rescue, who, I am also told, (see below) walked away with all of the proceeds from the event, including the email list of the participants. (Ouch!)
The two women, Angela Medlin and Amy Carson, who called themselves “Mom’s Against Mercury,” after this event, totally dropped out of the Autism Activist world,, so they tell me. So, for the last seven years they did nothing. These two get star billing in this article – I’m about to tell you why. One of them is pictured to the right.
But then – more happened…
Those discussions between the duo and the philanthropic group grew when an offer of funding was put on the table. In short – a duo that had been dormant for seven years could suddenly be active again. Sounds like a good thing? Keep reading. Right now I wish I’d never taken a phone call from them.
Over four months I got a ton of phone calls and emails from the duo soliciting advice – for a trip to New Jersey was imminent to personally meet with the philanthropist himself Barry Segal. I asked as many questions as I could of them, trying to get a feel for where they were, politically, in the autism world. It became obvious that they had a virulent, no respect attitude, what-so-ever, for ANY of the other autism groups. And, there were some very odd things in their make-up, and some very strange, to me, opinions.
It was kind of amazing to me that anyone, including Barry Segal, besides listening to them about what happened at the “Green Our Vaccines” walk rally would contemplate an autism leadership role for them. Why? To me they have limited abilities, and, certainly, limited thinking.
Strange as it may seem, they DID get funding even after they made it clear that they would work with NO ONE ELSE, under any circumstances, in the Autism world. After that four months, when they were assured of funding, they, knowing I was attempting to organize an Autism “summit meeting, went behind my back to Barry Segal to convince him not to fund a summit conference, claiming that they, and they alone, had all the answers to autism. And, it worked.
THAT really got my attention… I said to them:
If I had even a glimspe of this hubris of yours I would never have even have mentioned your names to Barry.
I’m revising my latest not yet broadcast article “Calling for Batman” to include the summit meeting. But, the next one is called “Treachery” and it is all about you two – in detail… You’ve outdone Safeminds.
I feel an obligation to protect autism parents from you. And I take my obligations seriously.
I made a serious mistake and now I will correct it.
In the end I wrote this, below, to Barry Segal:
Barry:
I withdraw my recommendation to work with these two. I am going to reactivate my box of blonde jokes.
You’re stuck with them.
More, I have no faith in any product they might want to employ, and I feel obligated to act accordingly.
Let’s look at Amy Carson and Angela Medlin in a bright light…
Are they really, as they portray themselves, the Autism Messiah, able to solve the autism problem with no help, or even input, from anyone else? Or, as I suspect, are they, in actuality, an angry duo that was marginalized by the autism community seven years ago for good reason?
From Wikipedia – The word “hubris” means extreme pride or arrogance. Hubris often indicates a loss of contact with reality and an overestimation of one’s own competence, accomplishments or capabilities…
But, it was too late…
There was a complication. Just while all this was happening, unbeknownst to me, it turns out that Barry Segal had NOT funded their organization – he had HIRED them as part of his staff. They actually quit their jobs in North Carolina and went to work, full time, for Barry Segal.
Now that’s interesting. Very interesting. Why? Well, there’s a BIG difference between funding people or organizations that can demonstrate that they know what they are doing, and inserting yourself into the melee.
I, frankly, don’t see Barry Segal in a problem solver role. That’s laughable. The man is in on his fifth wife.
More, he has, it looks to me, little, or no, history of business experience that would lead to anyone believing he could be a savior of the autism world. He ran, and then sold, a roofing supply company as a distributor between roofing material manufacturers and his biggest client Home Depot. His company, it looks to me, shuffled papers. Any financial success, I suspect, has less to do with business acumen, and more to do with who he knew at Home Depot.
When I look at Barry Segal’s interest in autism the term “dilettante” comes to mind – “dilettante – a person who takes up an art, activity, or subject merely for amusement, esp. in a desultory or superficial way; dabbler.”
Even more, it doesn’t take long to discover, as I did, that Barry has personal issues. In my experience, he “bad mouths” almost everyone that he has given money to, and then cuts off the funding. I’d say, that in my opinion, he was self-righteous, censorious, and judgmental, but, in reflection, I don’t think those words, either separately, or in combination, adequately state the case. There is something else there.
Something unpleasant to me. Something personal to Barry.
And then there’s his constant effort to impress others, like the time he took several of us to dinner at a restaurant where a piece of meat (steak) was fifty-eight bucks ($58). Want a potato with that – it’s fourteen dollars ($14) more. Salad? Another seventeen dollars ($17). Eighty-nine bucks ($89) total. Impressive? No. Any of us could have driven 20 blocks down the road, found a Sizzler, and had the same meal for $12.99, and shrimp and cheese bread would be included.
But taking a bunch of us to dinner at an overly-expensive place is nothing compared to a close examination of Barry’s “flagship,” his so-called Segal Foundation where, he claims, he is helping African children. My question to him was “helping African children do what?” I never got much of an answer to that direct question. Instead it was pointed out to me that ex-President Bill Clinton spoke at their annual meeting this year.
Bill Clinton spoke at their annual meeting? Sounds impressive, right? But, according to an article in CNN Politics, if you can cough up an average $189,000 per speech, you too can have Bill Clinton speak at your Cub Scout meeting.
So, how were Amy Carson and Angela Medlin able to get re-involved in the autism world at all? It makes little sense to me. There is only ONE reference that makes sense, and it’s from an email from Amy Carson to me describing their reaction to a March conference with Barry Segal. She said:
The Titty Committee prevails again! Hail to the power tools!!
So, what was their BIG PLAN? The one that “overshadowed” all others…
Now, I am not denigrating work done by Autism parents to solve problems, here. What I am questioning is that this plan, according to them, is so good that NO OTHER Autism parents, nor anyone in the Health Freedom Movement, need be consulted. So, let’s look at “The Plan.” It is in two parts.
(1) They contracted with a North Carolina public relations company to engage in a process to “raise awareness” about autism. The contract is for $5,000 per month.
(2) They provided a list of names of people that they want to come to New Jersey to be interviewed by Barry Segal.
So, let’s examine that “overshadowing” plan.
Let’s start with the first thing – $5,000 per month to raise awareness of autism. Are you kidding me? The CDC, alone, spends $5,000 every minute in each and every county in the US promoting vaccines. There are 3,144 counties. Big Pharma funds hundreds of so-called citizen’s groups promoting vaccines in the US, whose Executive Directors probably draw $250,000 salaries. They spend hundreds of millions on this.
$5,000 per month for public relations? That’s like standing on the edge of the ocean, peeing into the surf to try to stop the tide from coming in.
The second thing – bringing people for Barry Segal to interview. Well, I guess they can all come and listen to Barry, like he usually does, talk about how everybody else he’s interviewed wants his money but he’s not going to give them any because… And, maybe they can get a $58 piece of meat out of it. And a $14 potato? Or, maybe not. But, they WILL ALL be told about Bill Clinton speaking at his annual meeting…
To me, the reality is that Amy and Angela have NOT, once again, become Autism Leadership. Their role, as employees of Barry Segal, is to facilitate, with some cash thrown around, not the solution for autism, but the construction of a retired roofing distributor as the Grand Poobah of Autism.
You can laugh here – even though it’s not that funny.
Bottom Line?
I criticize Autism Leadership for not having a plan, for not understanding the big picture, and making little or no effort at organizing a plan, continuously using bad tactics that have little, or no, outcome. But, that doesn’t mean that I think all of them are worthless, or have nothing to offer. For they do. They just don’t think things through and organize very well, and I am finding that to be a characteristic of autism parents.
As I keep saying – I think it is time for Health Freedom to take over this project – picking and choosing people and groups with autism that we can train and work with. Yup, I have a list. In fact, two lists – one of people to call, and the other of people NOT to call…
Autism is too important an issue to be left to the Poobahs, the dilettantes, the dabblers and the hubristic…
More coming…
Stay tuned.
Tim Bolen – Consumer Advocate