walking away

My greatest hope is that the discourse on this blog and its accompanying Facebook page can serve as examples of environments in which compassion, understanding and mutual respect are paramount.

That said, I publish nearly all comments, but there are rare exceptions.
I have long been frustrated and deeply saddened by the chasms in the autism community. I will not allow Diary’s comment section to become a megaphone for the anger that serves to keep us divided.
I will not abide personal attacks, either on me or my readers. While I actively welcome constructive disagreement and respectful discourse, this is not a forum for unproductive anger, particularly that which is directed at one another.

While I am happy to respect anonymity, please note that I also do not publish comments without a name (or consistent pseudonym) and a valid e-mail address.

From the bottom of my heart, I thank you – not just for sharing in our family’s journey, but for joining the conversation. And in so doing, respecting each other, supporting one another, and finding ways to bridge the space between us.

~ Diary’s long-standing comment policy

I received a comment on yesterday’s post that quite forcefully implied that I should shun TPGA because they are divisive. Unfortunately, I wasn’t able to publish the comment because it was framed as a pointed personal attack from an anonymous commenter using a fake e-mail address and, as you can see above, I’ve been very clear that those (at least when I can catch them) will not see the light of day on Diary.

But despite its delivery, I think the question implied within it warrants an answer. Because it comes up in a lot in different contexts and in regard to many of the various people and organizations with whom I engage. So maybe it needs to be said out loud.

Why don’t I walk away from people in this community who are – or are at least perceived to be – divisive?

This is why –

(Ed note: Just to be clear, the following is meant to be general and is in no way, shape nor form reflective of my feelings toward Shannon or Rachel. Moving on .. )

Because if I do, then I’ve allowed them to divide ME. I’ve given them the power to categorize me, to put me in a box with whatever label fits NOT THEM. And I’m not willing to get into that box, nor any other.

Because if I walk away the dialogue stops.

Because if I walk away then I no longer have a voice in molding how things happen within an entire segment – the now NOT ME segment – of the community.

Because if I walk away then I’ve stopped listening.

Because I can retreat to safety and talk all day with people who share my views and therefore always think I’m right.  But as delightful as a chorus of Amens may be, they will never force me to examine my thinking, deconstruct my own prejudices and grow, evolve and change in the way that my girl needs me to.

Because if I walk away then I have given up the right to ask anyone else to examine THEIR thinking – deconstruct THEIR prejudices and grow, evolve and change in the way that my girl needs THEM to.

I have changed dramatically since starting this journey nearly six years ago. I don’t doubt that I will be able to say six years hence that I’ve changed even more. I sure as hell hope I can.

Individuals evolve. Hearts open. Organizations evolve. Perspectives change.  Advocacy evolves. We move forward. Society evolves. It has to.

But …

Nothing will open, change, move or evolve if we walk away from each other. No matter how divisive you may believe someone is, no matter how wrong-headed you find an organization to be, I challenge you to engage them anyway.

If you don’t,  if I don’t, NOTHING will change. And the ones who will lose the most aren’t going to be US or THEM – it’s going to be our children.

So say what you will, my dears, but I will continue to talk with and work with those who you may find unpalatable. Hell, I’ll even continue to work with those who (whom? I’m never sure) I find unpalatable. Because when I stop engaging in conversation with ANYONE, I’ve failed. And I may be able to live with failing myself, but I refuse to fail them …


37 thoughts on “walking away

  1. I wish I knew some great famous quote for this but alas, I don’t. Thanks for helping to keep the dialogue open. What’s scary is we must embrace the differences (of points of view) in order to understand. Hate crimes across the world have at their core a lack of understanding anf fear that different from me is bad. But isn’t that the opposite of what we are trying to teach others about our kids? How can I expect anyone to see the greatness in my son if I refuse to see the worth of their journey? Jess, thank you for you time, effort, and candor.

    • Maybe not a famous quote, but it fits, I think….

      The only way that we can live, is if we grow. The only way that we can grow is if we change. The only way that we can change is if we learn. The only way we can learn is if we are exposed. And the only way that we can become exposed is if we throw ourselves out into the open. Do it. Throw yourself. — C Joybel C

  2. Jess, what you just said can be applied not only to the Autism Community, but to life. You continue to be an inspiration to me in all ways. I would say “don’t change Jess”, but as you change and share your family, your life and your views, we all change. And in such marvelous ways. Thank you for being who you are.

  3. Have you seen that somewhat recent post on Facebook that says something like “live in a way that if someone says something bad about you, no one will believe it”? Yeah. No. Live – within whatever power you have – to cause no harm to others? Yes. Live in a way that somehow pleases everyone? Sounds a little unrealistic. Even though when you speak (and write) you represent a collective voice, you are still allowed to be you; you still need to make decisions that align with your heart and your best intentions for your family and for you.

    Even in a healthy, smoothly functioning society, there are going to be differences of opinion. That’s ok. It’s good. It is, as you said, how we learn and grow. Being a coward who posts anonymously with a fake email address? Not learning and growing. Just a hunch.

  4. I love that you want to talk about autism- the parts that scare us, that divide us, that challenge our community. That is why I love your space; everything is put on the table, and it’s our job to develop awareness, make choices, to listen and observe what is happening in someone else’s world with autism. You’re such a gift. Thank you.

  5. I’m so glad you chose to address the comment, letting your readers know your opinion and where you stand. Maybe you will open the minds of those who choose to stand so solidly behind their drawn line. I hope so, because I believe as you do, that we must be open to everyone within our community. We all have our own stories, and we all continue to grow and change along our respective paths. (and I love that your comment section never turns into a shouting match, thank you for that)

  6. I am knew to the autism community and have seen how divisive people can be within it… it’s quite sickening, really. I applaud your efforts to be a bridge. In the end, it’s only about our children. Kudos to you!

  7. Congratulations! You’ve just said what what I’m sure a bunch of us would be dying to say. Accept, you used elegance and poise. I don’t think my words would have come out as sweetly as yours did. Thank you for standing up against those who just don’t understand. You are an inspiration.

  8. Well said!! Silence met with ignorance is a recipe for disaster!! We need more people like you who are able to see past the ignorance and open up conversation to REMOVE it!! When we shut out the very people who go up against us, nothing changes…. That said, there is a very big difference between someone stating a difference of opinion and someone attacking in a non-productive and destructive manner – there is no room for that here, I agree!! You do a great job!! Thanks for always making a positive difference!!

  9. I posted something similar on my blog, but far less eloquently. We have the right to disagree, but not the right to dismiss or insult. This is a road we travel together and the idea of community is not to dismiss your companions and turn on them. Do that and your path becomes solitary. I would rather walk with others even if in good faith they disagree with me.

  10. this is exactly right…if people wall themselves up behind a perspective, demonize every other point of view, stop talking…the entire issue suffers. people just undermine their own efforts. it’s doing the hard work of listening…communicating…that furthers the cause. so, you’re great…TPGA is great…the more discussion and mutual listening the better.

  11. I love your point of view and see great value in it. I feel quite the same. I am always open to listening because it allows me to learn. It does not force me to agree with anything it just provides me with information and I need as much information as possible to be the most effective for my boys. If I disagree I can absolutely respect the other point of view because while all our experiences include autism all of our experiences are different.

  12. Embrace and respect our differences. We need to stand together as a community, instead of letting our different views continue to divide us. I’ve long believed if we all stopped fighting with each other, we could move mountains. We all have our own path on this journey, but the destination is the same: Helping our children, and all with Autism, to live to their fullest potential (what ever that means for them), and to live in a world that understands and accepts them for who they are.
    For Cymbie, for Brooke, for ALL of them.

  13. And that, all of that, is why I love your writing. The way you think about your role as a writer – as a shepherd and a learner – is deeply insightful. Truly inspiring. Greatness. Your leadership shines in this post. Your girls will both one day know completely how important you are to so many.

    (I had hoped a particularly divided conversation, mostly on Facebook, would continue for exactly those reasons; I was learning and hoped that other hearts and minds were too).

  14. Jess, you totally rock! Even when I don’t agree with you (ok, that’s never happened yet, but it’s bound to some day, right?) I still respect the raw emotional honesty with which you speak. And just because I love you so much, and because I sometimes feel I missed my calling as an editor, I’m going to give you a hint: When you’re not sure whether to use who or whom, substitute the word he for who and the word him for whom and see which one sounds right. It always works. Sometimes you have to rearrange the words to figure it out. But I will read and adore your blog whether you get your pronouns right or whether you don’t. 😉

  15. Love it. This page… you… your girls… were there for me and my husband and my family during the huge rough patch that hit at the magical age of five for my oldest with severe classic autism. Diary has been a place I can go and know that I’m not going to have my already exhausted heart and soul trampled under the cleats of someone with a clear agenda that takes little else into account… and that was so needed. I was so desperate for understanding, and although I still need it, you taught me to hear all the sides and decide what I think. That it’s okay to not take a clear side, and it’s okay to take a side, but we ought to all be able to listen to one another and keep the exchange of ideas open. There have been times I felt like my little corner of the world didn’t matter, and then I hear you say “share your story” again, and sometimes that’s the nudge I need to click “new post” and begin again. Thank you for standing up in a caring, kind, considerate, but strong and passionate way. You are such a blessing to us, Jess! *hugs*

  16. Thank you, thank you, thank you for posting this commentary. The inability to communicate meaningfully and respectfully is hurting so many aspects of our society. Between the media, the politicans and the activists everyone is trying to place people in boxes–you’re either for us or against us, a friend or an enemy, a truth defender or a truth denier. But life is never that simple. You cannot deny someone’s beliefs without listening to the story of how they developed them. You have not lived their life or been a witness to their truth. Certainly the theme of the posts this week demonstrate that, each individual’s autism is unique, each person’s experience is different. Instead of trying to categorize individuals by their experiences we need to bring the lessons learned from those experiences together to get the help that the entire community needs. To a certain extent we are all groping around in a dark room here trying to find the light, wouldn’t it make more sense to hold hands than keep poking each other in the eye? So thank you for all you do with all groups.

  17. As always Jess, you are spot on. If only more people were as open minded, honest and selfless as you, then we wouldn’t have the division on the first place. Thank you for being such a wonderful voice in our community.

  18. Lovely post! I must say, I submitted an article yesterday to TPGA. Not sure if they will post it but it was the perfect storm of me feeling safe to express how I was feeling about a divide in our community. If they do not print it I may just put it on my blog. But thank you because it was swirling around in my head and after I read yesterdays post I decided to put it down on paper! I loveyour statement
    “Because if I walk away then I’ve stopped listening”
    This is a huge problem…A problem I encounter as a parent and even moreso as a professional because honestly, my choices were made years ago because I refused to stop listening to all my options! This is why I love this statement!! Thanks Jess!

  19. I think a lot of people tend to conflate their choices in life with their self-worth. When people do that, they are incapable of having objective, non-defensive discussions with people who have made different choices. Every difference gets perceived as a veiled insult (or maybe not so veiled, if you get two such people together). I’ve thought for a long time and blogged some about how to help people acquire a more abstract perspective. The only answer I’ve got is to do exactly what you are describing here, Jess. People aren’t interested in doing something that they think cannot be done. By simply doing it, you prove otherwise. That’s the first step.

  20. Well said, and thank you. We have to keep talking and keep listening to keep moving. There are rules to a “fair fight” – but fight we must, for our children. We can disagree, wrangle, argue, and compromise (or not), but at the end of the day we have to live with ourselves and our children, and the results of our words and decisions.

  21. Jess, this is very impressive. (and i’m not just saying that b/c i agree whole-heartily ;)) The perspective you have, the grasp on the bigger picture, takes a certain degree of enlightenment. The ability to remove our own judgments from the equation and continue to act on what we know to be the right thing takes diligence. To not walk away from the autism conversation with ANY group takes a quiet strength. I applaud you and the people who raised you. You’re a smart lady.

  22. Very well said, my dear. I couldn’t agree more…even when (especially when??) I want to put up my dukes and fight. It’s a natural response but it leads to nowhere productive. My son, your daughter…all of our children need us to listen to one another, learn from one another.

  23. Wow. I understand that this refers to the autism community, however, I simply can’t overlook the parallels to “community” as a whole. To America on the broader scale. So much of our country and communities are divided right now when we need the type of strength and the attitude you display here, and the stakes are the same… Our children. Love you!

  24. Very well said, I enjoy the tears, the anger, the stance against the world you take, the way you look at life with an Autistic child..what I’m trying to say is I love everything about what you put into words. I look forward to your blog’s everyday and so have many of my coworkers. You make me cry, laugh, want to take that stance with you and most of all YOU give me inspiration. When I follow your blogs I know I’m not alone in this world. I know I’ve got one more person on my side in this war we call life and for that I THANK YOU and say…keep on keeping on!!!! We are in this with you!

  25. Although your comment is much more eloquently delivered than when you were young, it comes from the same bright independent thinking and most beautiful person I know and have had the privilege to know from her birth. You were, and will always be, the smartest person I know. I wish there were more of your ilk in the country for we all need your form of enlightenment.
    Love from a very proud Dad

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