3/12/2015

On Revisiting Past Interactions and the Unfairness Factor: Newsweek's Autism Article

In December I was contacted by a reporter from Newsweek asking to interview me for an article about Jonathan Mitchell. I politely declined, as I haven't had any interaction with him since I apologized in 2011 for allowing him to be bullied in the comments on several of my blog posts. I sent the reporter the link to the article and my addendum with the apology.

Since I declined, I was more than a bit surprised to find out that my words to Jonathan about autism not being his biggest problem, along with my take on my three children with autism, essentially close the article.



 Initially, after reading the piece online, I decided against commenting on it. The title for the article online wasn't really that reflective of the article, as the article was more about Mitchell and his life and how he was a loner even in the autism community. My 13-year-old read the article, and she came away from the piece feeling bad for Mitchell, wanting him to like himself. She felt his situation was unfair and he should like who he was, commenting on all the things he can do and how brave he was to sing in public.

I've had mixed feelings about the article, whether it was aimed at being sympathetic toward Mitchell and his point of view or if its point was far different. Online with the title "The Debate Over and Autism Cure Turns Hostile," it is innocuous enough, but it is very dated. My interactions with Mitchell were from 2009 to 2011. In the online world, that's ancient history. It didn't just turn hostile. It's been hostile from the get-go, long before I arrived on the scene.


The picture opening the article shows Mitchell as he would seem to see himself, alone and lonely, fading into the background.

The actual print magazine, although the article is word for word, changed the intent by changing the title:

 
 The full first two pages shows Mitchell at his desk, a picture that appears in the online article.

02_20_JonathanMitchell_01 

It doesn't appear with that title, though, and I think the bait and switch of the initial online title and the title in the contents, "Hope Kills," is unfair.

Sure, several individuals I know online appear in the article, quoted from present time, stating that Mitchell hates himself.

Is this how we want to treat people? Mitchell, in the article, admits to being rude, and the article author notes that he gives as good as he gets, but again, what does it serve to cut a man down?

By reducing Mitchell to a trope to either sympathize with (feel sorry for) or to dismiss as a self-hater trying to make other people hate themselves, the article does Mitchell a disservice. It doesn't see him as a whole person with feelings. It doesn't consider how this bait and switch headline will affect him or other autistic individuals who are similar to Mitchell in that they are ostracized, alone, and lonely, because of difficult behaviors or behaviors just off enough to make people veer around them.

Mitchell himself might be fine with the portrayal, seeing any acceptance of autism (autistic individuals) as the same as accepting a potentially (and perhaps often) crippling disability as the norm, in need of no mediation.

I think Mitchell and all the individuals like him deserve better. I'm not sure he was heard in this article, that the reality he was trying to convey was really understood. That sometimes a "cure" would be a blessing for those who are severely disabled by autism.

When I started blogging six years ago, I ran across Mitchell through the Age of Autism blog, which featured him as an adult autistic wanting a cure. We had several acrimonious interactions, and rather than considering the individual on the other side, I focused on the words. I ignored the communication disorder that is part and parcel of autism. At the time, my oldest was 19, and I did not see my son in Jonathan. I saw a middle aged man who was bitter. I didn't go deeper.

Six years later, it's becoming easier to see my son thirty years into the future, with his difficulty in regulating tone, reading facial expressions, and understanding receptive language. I hope and pray that people who cross his path will look past the issues and see him empathetically and give him the benefit of the doubt, that they will be kind and patient and accepting. 

I hope that there won't be pictures portraying my son as alone or lonely or as a self-hater. I hope he won't feel that way. And I hope Jonathan Mitchell will not always feel that way, either. As my 13-year-old says, "Everyone deserves a friend and to be happy."


9 comments:

jonathan said...

Kim I never objected to you allowing me to be bullied fine. I've been bullied by two bit punks like Clay Adams and Phil Gluyas all my life. What I objected to is that you laughed at my disability and contributed to making fun of it as well as putting one of the bullies words on facebook and continuing to make fun of me. You can try to put the truth behind you, but it's still there. Why don't you admit you were wrong to make fun of me also.

Jonathan

M.J. said...

"It's been hostile from the get-go, long before I arrived on the scene."

But, and this is kind of the point, did you do something to stop the hostility or did you do your part to keep it going? Since we both know the answer to that question let me ask you a better one. What are you doing now to stop the hostility?

Are you jumping into the comments in the Newsweek article and defending Jonathan from the continuing stupidity, to help make his future better, to help undo some of the damage you did, or are you sitting on the sidelines and watching the past repeat itself?

K Wombles said...

Fair questions, but they are also questions you honestly need to turn on yourself and answer. We both know the answers there, as well.

We both let the hostility build up. We both chose to read into each other's posts and the comments the worst of intentions.

We forgot or never considered our commonalities: that we shared the experiences of parenting three on the spectrum, that we would give anything to,see our children progress and thrive, to overcome their challenges.

What did I do? I stopped writing about people who believed differently in a manner that attacked them. I offered apologies both private and public to individuals I felt I harmed.

I made sure that the autism blog's directory was inclusive of all points of view.

And I checked my sarcasm and try to consider the other person's perspective before reacting.

Sarcasm and hostility are so easy. Checking our egos and trying to meet each other at least halfway is harder but worth more.

In all the years of reading and participating in comment sections, I have never seen calling random strangers out work. All it does is lead to aggressive, pointless diatribes, so, no I'm not going to wade through the cesspools of comment sections.

Since my health took a turn for the worse and I've been dealing with being home bound and in bed most of the time, I try to use my energy where it will matter most. This post makes a bigger difference than that comment section ever will.

Best wishes to you. I'm sorry to see you let blogging go.

K Wombles said...

Jonathan,

My apologies. I should not have allowed those comments on my blog nor carried them over to a Facebook page where you could be subjected to further ridicule. That was wrong. Nor should I have ever have made fun of you in anyway.

M.J. said...

Actually, I can honestly say that I have no regrets about what I said and did over the years. I tried extremely hard to keep the hostility out as much as possible until the point of no return was crossed. But even after that I still tried for a measured response while still keeping as non-personal as possible. As for sarcasm, well, I just can't help myself sometimes.

However, the point is that you were on the other "side", if there really are "sides". I can tell the young punks that their behaviors are inappropriate until I'm blue in the face but they are going to ignore me because I drink a different type of kool-aid than they do. But if all of the "sides" get together and tell the the newcomers that their behaviors are wrong and inappropriate and will not be tolerated then maybe the hostility can be changed.

In the real world I try to do exactly that. If anyone tries to tell me why vaccines cause autism then they get an earful of exactly what is wrong with the idea the same as someone telling me that autism is a gift would. Although I am perhaps not the most rational when it comes to the folks from ASAN and they better hope they never try to stop me at an AS walk to explain their view of autism.

Ah well, I hope your health problems get better. Dealing with children with autism takes its toll no matter their age or functioning level and it would really suck to have to do that when you have health problems on top of that.

K Wombles said...

Agreed, if enough of us stood together and said that civility and respect are required tools for the change we all want to make: a world that cares about the disabled and their needs and recognizes their equal humanity and their right to autonomy, things would begin to change.

That's real world work, first, obviously as standing at the Internet and doing it is like trying to plug a hole in a dam with chewing gum.

We might not make wholesale change, but we can make real change in our own lives by changing our own actions. That'll ripple out. I have to believe that.

See, I regret coming online and seeing two sides and feeling like I had to make a choice. I regret my sarcasm, several posts where I singled out individuals undoubtedly undergoing great stress and adding to it. I regret buying into the mindset that if we disagreed we were adversaries rather than people who had some commonalities along with some differences.

I regret forgetting the people on the other side of my words. I'd never treat my students that way, nor my kids. It's unacceptable that my start online was very much in the vein of some of the more hostile bloggers who think mockery encourages positive change. It doesn't.

I would have done a lot differently. I would have tried to reach out in friendship rather than striking out. I would have found ways to share information without assuming superiority. I'd have stayed quiet more often. I'd have thought longer and been kinder.

Thank you. Four months with a walker or cane has shown me a whole other world in regards to disability. We have much work to do.


Stephanie Crist said...

M.J.,

A lot of people on "both sides" (reality being there are more than two sides, and that there are people who straddle multiple sides) that I used to interact with have stopped engaging in the toxic areas (and some have stopped engaging at all), because the "dialogs" were nonproductive, draining, and toxic. Some of us, Kim included, have learned from our mistakes and try to better with what we have to give.

I agree with you that the greater autism community (as I call it) needs to focus less on "sides" and more on commonalities. The truth is that all of us (with a few possible exceptions) want to improve the lives of people with autism. The truth is that this end must be achieved through multiple ways that include both treatments and acceptance and empowerment. The truth is that we could all accomplish a whole lot more if we could only stop fighting each other.

I, for one, am trying to build something that will help with that, something that isn't dependent on "sides" but is dependent on achieving change. Kim, for one, does help with that to the extent that she can, simply by encouraging me and educating me about her life and her experiences.

These stories we share are what makes change possible. If we can truly listen and share honestly with each other, regardless of "sides," we come one step closer to working together. If we do that over and over and over again, we discover the common ground that unites us.

On the other hand, I am sorry that you do not regret anything you've said over the years. It's been a long time since we've interacted and we did not interact for very long, but I do remember why I stopped.

One step to ending the hostility is to stop "drinking the Kool-Aid." If you take a moment to remember where that phrase came from, then you'd remember that it's deadly. You can be passionate and hold on to your convictions, without believing something because it comes from "the right side" and without disbelieving something because it comes from "the wrong side." Listening, thinking, responding respectfully--these are the things that create change.

M.J. said...

Stephanie,

The reason I have no regrets about anything that I have said over the years was one of the major things I was trying to do was make people think about the position that they were taking. I tried to do so respectfully but there were often times that things turned ugly. But, and these are key points, I always pushed back with the absolute minimum amount of force that I could - with one or two hands tied behind my back so to speak. I could always be persuaded to change my opinion if someone made a good enough case. I never pretended that my current way of thinking was the "right" or only way. I never Orac'd, I mean mocked, people just because I could.

If my goal was to just push my version of the kool-aid and make as many people as possible believe it I could have done a far, far better job than I did.

God knows I am far from perfect and that I certainly have strong opinions about autism. But I have never done anything that I regret. There has not been one a single case that I can remember where I felt that I went over the top or was just plain cruel to someone. Can you say the same?

Stephanie Crist said...

M.J.,

I haven't been "plain cruel" to anyone since I got mired in political discussions. The subject of my wrath was a neo-Nazi. As a blue-eyed, blonde-haired, fair-skinned descendant of the Lakota Sioux tribe, I badgered him with the facts until he admitted that his beliefs had nothing to do with pure genetics and everything to do with appearance. So I can't honestly say I regret my cruelty.

What I do regret is getting caught up in the us/them dialogues surrounding autism. I tried very hard not to repeat the mistakes I made with my foray into politics, but I still wasn't ready to see both sides without prejudice. I got caught up in who was "more right" and I very much regret that.

What I've discovered and come to terms with is that "both" sides are right about some things and no side is above reproach. More important still, I've realized that unless we can work together, we'll never be able to make the changes we all want to see.

By and large, most of the people involved in the Greater Autism community want to see improvements in the lives of people with autism, both functionally speaking and societally speaking.

If I'm "pushing a side" it's one in favor of finding common ground and using collaboration to discover synergistic answers to the problems we experience.

I still have strong opinions in favor of neurodiversity. I will never accept that identifying and aborting autistic fetuses is the right thing to do. I can't imagine myself accepting that rewiring someone's brain to make them more acceptable to the general public (and their own families) is the right thing to do. But there is a lot of middle ground that, at least as far as I can see, has been very much neglected.