Why does Jenny McCarthy need Miss Montana?

16 May

From the bottom of the ocean
To the mountains on the moon
Won’t you please come to Chicago
No one else can take your place

-Graham Nash, “Chicago”

* * *

The first autistic Miss America contestant is a cheerful 19-year-old with heart-breaking beauty and a refreshing message. She celebrates her autism, telling reporters and talk show hosts that “Being on the spectrum is not a death sentence, but a life adventure, and one that I realize has been given to me for a reason,” and “It’s amazing how people don’t accept other people just because they’re different. Being different is not something to look down on, but to be embraced. People need to understand.”

She once told Jeff Probst “There is nothing wrong with being autistic,” and “My autism doesn’t define who I am, I define my autism.”

So why has Alexis Wineman accepted Jenny McCarthy’s invitation to join a “celebrity panel” at a notorious anti-vaccine conference, breaking gluten-free bread with people who compare autism to a death sentence, and something to be despised? One possible answer can be found in her interview published on Disability Scoop last October:

‘Socializing with my classmates, even when I wanted to, was awkward to say the least. I wouldn’t get their jokes half the time. I took everything so literally,’ she told the site.

Here’s what Alexis posted on her Facebook page in January, after receiving a phone call from McCarthy:

Could it be that Alexis is following mean girl McCarthy into the lavatory for a humiliating makeover? Does she literally believe that autistic children can be “rescued” with bleach enemas, chelation, and chemical castration, all of which are “treatments” promoted by other invited speakers the AutismOne conference?

Wineman grew up in Cut Bank, Montana, one square mile of treeless plain and 2,800 hopeful souls. After second grade, Alexis’s twin sister, Amanda skipped ahead into fourth, but not Alexis. “That’s enough to make anyone feel dumb. But I got called “retarded” a lot. I really hate that word,” Alexis told Glamour Magazine. Her behavior deteriorated.

“The meltdowns lasted hours and became more frequent,” says her mother, Kim Butterworth. “We’d have to grab and hold her; she’d be as stiff as a board. It was scary. And she started melting down at school. I’d get the call: ‘We’re having a problem.'”

At age 11 she was diagnosed with PDD-NOS, after the family consulted their pastor and a therapist. “I felt so alone growing up, and I still do at times,” she told a conference on autism at the Montana State University Billings last fall. “Nobody understood what I was going through. I separated myself from my classmates and spent most of my time alone. I stayed quiet to hide my speech problems. Due to these overwhelming and daily struggles, I looked at myself as a punching bag for others, and a burden to my family.”

Her turnaround came in high school, where Alexis ran cross country, joined the drama club, and became a cheerleader. At 18, she entered the Miss Montana contest and won.

Alexis Wineman

Alexis wears her celebrity well. “We cannot cure what is not a sickness,” Miss Montana said in the video shown at the pageant. “But we can begin to understand autism, and help those with the condition to unlock the potential that lies within all of us.”

McCarthy and her business partners disagree. The AutismOne conference is a veritable trade show of unproven and questionable autism “cures”, where the hiss of hyperbaric oxygen chambers lures the credulous, and Mr. Andrew Wakefield tells starry-eyed mothers that “recovery is possible.”

So why did McCarthy reach out to Alexis? Could the invitation be part of McCarthy’s 12-step anger recovery program? The nursing school drop out and ex-MTV host is desperate to shed her anti-vaccine past, which means dissing the “angry mob” she once bragged about. She told the AP in January that she hasn’t publicly commented on vaccines in four years (it was more like two years, but oh well). Her 2011 AutismOne keynote address barely mentioned vaccines. In her 2012 speech, she was introduced by a plaintiff’s attorney who told parents “the claim that mercury doesn’t cause autism is a lie,” but McCarthy herself stayed away from the V word. Meanwhile, when she speaks of Generation Rescue (“my foundation!”), she stresses assistance to parents.

All of which raises (not begs) a serious question: Is the anti-vaccine movement growing up? Can the acceptance-and-accommodation virus find willing hosts in McCarthy’s mob? Can Alexis Wineman from Cut Bank, Montana, attract enough autism parents, and generate enough buzz, to turn Generation Rescue into a responsible and respected advocacy group?

Does McCarthy need Miss Montana? Or is the invitation as dishonest and manipulative as it appears?

 

Cross-posted at AutismNewsBeat.com

22 Responses to “Why does Jenny McCarthy need Miss Montana?”

  1. Anna the Flutist May 16, 2013 at 19:41 #

    I think it’s great. She is truly beautiful and deserves to show it.

  2. Science Mom May 16, 2013 at 21:39 #

    Sadly, I don’t think Jenny McCarthy’s nefarious escapades regarding vaccines and “curing” autism are well-known with people not involved in what she is doing. So I can see why a naive teenager who maybe just looked at the GenRes page would be duped. I doubt her message of ‘autism is not a sickness’ will be well-received by the AutOne crowd.

  3. lilady May 16, 2013 at 22:11 #

    More at issue here, is why does Miss Montana *need* Jenny McCarthy and the Autism One Conference?

    Miss Montana should have checked out Jenny’s Generation Rescue and the Autism One organizations, before she agreed to participate. Hopefully, she’ll learn by this experience and won’t ally herself with the luminaries of the anti-vaccine, anti-science movement, who subject autistic kids to bogus *treatments/cures* in a feeble attempt to *recover* autistic children.

  4. chavisory May 17, 2013 at 00:26 #

    Fascinating all around….

  5. Sue Denim May 17, 2013 at 06:37 #

    We’re all naive and gullible, until we’ve been burned enough times. Hopefully, she’ll figure it out while she’s still at the conference, and make a big stink while there (or right afterwards).

  6. Dave May 17, 2013 at 11:19 #

    If Jenny McCarthy decides to surround herself with nice people, that should be her right. If Miss Montana decides to attend an autism conference, it hardly means she is endorsing every sponsor.

    I think it over-simplifies people to assume that Jenny McCarthy is always wrong. She is not an evil person, she is just a person. Like most people, I am sure she has some good ideas and some bad ones. Let’s at least go to the trouble of attacking the ideas instead of the person.

    • futuredave5 May 17, 2013 at 11:27 #

      To follow up on my own ramblings:

      I think it is too much to expect every person with autism to research all the past statements of every sponsor before attending an autism conference. If you browse to the Autism One website today, the first few articles include: A piece by Norm Chomsky on the media coverage of the autism “epidemic”; a blog piece on autism and artistic inspiration; an article about the importance of good nutrition in autism treatment; a piece by Bill Posey calling for yet another vaccine study (and, oddly, the prosecution of Paul Thorsen); a description of MTHFR; a description of NAET (I had to look it up, it appears to be quackery); and a BCBA piece on imitation and its use in educational interventions.

      Depending on how you count Norm Chomsky, the website seems to be no more than about 50% random unproven theories. The other 50% is mainstream, maybe even productive. The advertisements on the website don’t hold up as well, but we can’t really judge a website by what ads they choose to accept.

      The average person getting an invitation to the conference might not even notice the relatively high percentage of “unproven theories”.

      I blame the media for this as much as anyone. The percentage of “unproven theories” on CNN is almost always exactly 50%, since they give equal time to people who hate science. On ABC, science barely gets a word in edgewise, and on FOX you can get fired for saying anything that is too accurate.

      It is far too much for us to expect more accuracy from beauty queens than we expect from TV news.

    • Science Mom May 17, 2013 at 15:27 #

      @ Dave, Ms. McCarthy isn’t ‘surrounding herself with nice people’, she’s engaging in shameless self-promotion and trying to elevate her status off the backs of others. Take a look at the AutOne speaker list and the rubbish and outright abusive “treatments” they promote. Just because some foolish researchers choose to present there doesn’t whitewash the fact that horrible, denigrating, dangerous and useless “treatments” are heavily trafficked. Anyone who would do that is evil.

    • Sullivan (Matt Carey) May 17, 2013 at 21:44 #

      “I think it over-simplifies people to assume that Jenny McCarthy is always wrong”

      Granted. No one here has done that now, have they?

      I won’t speak for anyone else here, but I’ve never met Jenny McCarthy and frankly don’t care if she’s nice or not. What she does and what she says, that’s another story. And it hasn’t been a pretty story when it comes to autism.

  7. AutismNewsBeat May 17, 2013 at 16:37 #

    Dave, try posting your last comment on AgeOfAutism, then get back to us.

    • Sullivan (Matt Carey) May 17, 2013 at 21:41 #

      I wish Ms. Wineman well. From what she’s said so far, she sounds like a good role model.

      There are a number of high profile autistics who attend parent conventions of questionable scope. I can’t say I agree with their decisions. These conventions do not present good role models for the autism communities, in my opinion.

      “I looked at myself as a punching bag for others, and a burden to my family”

      Perhaps Ms. Wineman can help to explain to AutismOne how harmful that viewpoint is. Perhaps she can educate those at AutismOne that ASD’s are not so obvious; that people are diagnosed as late as age 11 (or older). Perhaps she can be the role model that is so needed at AutismOne.

  8. ricosmom May 19, 2013 at 21:55 #

    Um, folks, if Alexis has any degree of ASD, don’t you think it possible that she is not reading Ms. McCarthy’s intentions very well? That she thinks JM is genuinely interested in her story? Why would we expect her to do better at discerning her real motives than the thousands of “NT” (whatever that is) who have “drunk the AutOne koolaid”?
    They throw parents in jail for using prayer to try to heal their children, but these quacks are free to peddle their “cures” and we don’t try to legally stop them… the Geiers, for example, lost their medical licenses….. but where’s the outcry to protect the voiceless autists and those too young to have legal standing?

  9. Leo Arthur Capella (@thesnakestweet) May 19, 2013 at 22:11 #

    If Montana has a version of “Flower of Scotland” then I hope Alexis Wineman uses it to fire her up (or the original) as she’s going to be in for the panel equivalent of a rugby cup final.

    Seriously though how’s ASAN or any other American autistic self advocacy organisation outreach been when it’s come to approaching Alexis Wineman over autism? I ask because whether it’s people like Alexis Wineman or Paddy Considine, Disabled Peoples Organisations and disability charities on both sides of the Atlantic seem to be missing a trick when it comes to outreach in terms of autistic people in public life.

    • Dave May 20, 2013 at 11:41 #

      This seems like a valid question. Maybe we should not be asking why Jenny McCarthy is asking Alexis to attend. Maybe we should be asking why no one else is. It seems like an opportunity to help the career of someone with ASD, and also to get out a positive message about evidence-based treatments.

      • Sullivan (Matt Carey) May 20, 2013 at 18:50 #

        “Maybe we should be asking why no one else is”

        I don’t have access to her email or her phone. Thus, I can’t say “no one else is”. How did you come to this conclusion?

        As you say, perhaps she will voice some views which will challenge the AutismOne parents.

      • futuredave5 May 20, 2013 at 22:09 #

        Matt, You are the one who said she was “loaning her credibility” to AutismOne. It just seems like if we are expecting her to speak out against the organization that invited her, we might be expecting too much. She is not a doctor.

        Beauty queens usually speak at Girl’s clubs, animal rescue organizations, churches, homeless shelters, and that sort of thing. (Not much controversy.) Alexis, for example, already attended Special Olympics in her capacity as Miss Montana.

        If you feel that she should decline the invitation, then maybe you should write her directly and explain your reasoning. I think she has a Facebook page, so you can send a private message.

      • Sullivan (Matt Carey) May 20, 2013 at 22:30 #

        “if we are expecting her to speak out against the organization that invited her, we might be expecting too much”

        If she can’t disagree with the people who invited her, she should not attend. Are they buying her silence, which is a form of approval? Absolutely, she is loaning her credibility to the convention. If she goes and remains silent, she is doing herself and the autism communities a disservice. If she agrees with what they are doing, she is also doing a disservice.

        “She is not a doctor.”

        Very few people at that convention are doctors. That doesn’t stop them from givingg medical advice. People who are not doctors, and people who have medical degrees but are not licensed to treat, will be giving medical advice all the time at AutismOne. They may give some sort of disclaimer, but it’s medical advice. If she is not comfortable disagreeing with the people who invited her, she should not attend.

        I don’t feel that anyone should attend AutismOne. OK, journalists and social anthropologists, maybe. I make my views clear. I do not email every attendee and/or presenter. The fact that I don’t reach out to each individual doesn’t change my viewpoint, nor the validity of that viewpoint.

  10. Elizabeth Mallard May 19, 2013 at 23:21 #

    She has the rare opportunity to gracefully disagree in a large public forum, and as an Autistic. My thoughts will be with her.

  11. chels744 May 20, 2013 at 22:46 #

    It appears that she just has not developed her nose for bullshit yet. She will in time. She needs to meet some fellows from ASAN, they can knock some sense into her.

    • Sullivan (Matt Carey) May 20, 2013 at 23:07 #

      I think if the people of AutismOne are their true, honest selves, she will get a pretty good education. As already noted, she will likely be considered “not a true autistic” by many. Views she’s already publicly espoused are strongly rejected by many (most?) of the parents at AutismOne.

      When it comes to learning things the hard way, she is the one who can teach me. Not the other way around. Based on the statements she’s already made, I suspect she may be in for some surprises at AutismOne.

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