in this together

We will return to New York tomorrow, I promise. In the meantime, the following was my response to a comment on yesterday’s post. I’m reprinting it here because I think it’s important. I’ve edited it slightly to make it a bit more readable than the original, which I had typed on my phone.


{image is a photo of Katie and Brooke three years ago. Brooke is hugging Katie and Katie is pointing at her and grinning at the camera. While the photo might not seem relevant, it is.}

Frankly, I believe that once we’ve acknowledged that a word (in this case, the word, “broken”) comes with weighty, hurtful implications, the conversation about who it’s “okay” to apply it to and who it’s not it is no longer necessary. In my view, once we’ve decided that a word is toxic, it’s time to stop applying it to anyone, no less the people we love.

I’m sure that at another time “broken,” had a very different connotation than it does now, but it’s reached a point where I believe that it comes with too much baggage to be used. Whatever the process was to get to that place is, I think, irrelevant when it comes to the decision about whether or not to use it once it has.

Will it be up to our kids to reclaim it? Well, sure. Just as many members of disenfranchised groups find power in using society’s demeaning and hurtful words to self-identify or refer to one another within that group. I think reclamation of language can be an incredibly powerful tool when used by the group that it has served to disenfranchise.

But when it’s used by those who are not discriminated against in the same way, it’s hurtful without a shift of power, rather, it serves to maintain and reinforce the power dynamic as it is.

I talk about these words because I believe, based on everything that I have heard from those like my girl, that they are hurtful to her and her autistic brethren. And if I’m going to advocate for her / them, then it’s my job to point it out when I see them being hurt. And to hopefully do it in a way that is still respectful of others’ journeys. But to remain quiet in the face of something that I see hurting her and her autistic brothers and sisters because to speak out would be viewed as judgmental would, I believe, be failing her dramatically.

As I said in response to another comment, I have absolutely no doubt at all that the mom who wrote the post I referenced didn’t mean to offend anyone, and certainly didn’t mean to hurt her child, who she obviously loves deeply. Just as I would never, ever mean to hurt my child or others, but nonetheless, have (and, unfortunately still sometimes do) in ways of which I was / am completely unaware.

It is by reading the words of and talking to (firstly) autistic people and (secondly) other parents who have a different / broader / longer perspective than my own that I have received the gift of becoming more sensitive to words that can harm without intent. I remain deeply indebted to them for teaching me and then reminding me that the way in which I express my feelings, and the forum in which I choose to do so, can and does have a tremendous effect on my child, not just now but in the future. For me, it is the height of compassion to educate one another about what we have learned. I can imagine no better way to support one another and our children.

We’re all in this together. I believe that we fail not just our kids but each other when we remain silent in the face of that which demeans or dehumanizes or otherwise harms our kids, no matter the intent. I actually think it’s even more important to talk about it when it’s NOT meant to be hurtful, because, my God, I want to know when my efforts to help are doing just the opposite, don’t you?

As for judgement, I think that’s another word that has come to carry a great deal more baggage than it should. It’s taken me a long time to come to that point, and it’s taken a LOT of frustrating work on the part of some dedicated autistic advocates to get me to understand it.

I don’t stand in judgment of this mom’s heart, nor any other. I couldn’t. It’s not my place. But that doesn’t mean that I don’t evaluate her printed words and make a judgment call, based on my own experience / evolution / myriad relationships with autistic adults, as to whether or not they are hurting my kid and them.

After a spate of attempted and successful filicides in the autism community last year, I wrote about what I’ve learned over the years about judgment.

“I have spent a lifetime trying not to judge others,” I wrote. “Trying to be open to their perspectives and belief systems no matter how far afield they might be from mine.

But there is a time to judge.

A place that demands that we judge.”

I went on to say …

“Not judging one another is admirable when we’re talking about race, color, creed, who we love, who we marry, how we choose to identify ourselves. Not judging when men are punching women, parents are beating toddlers, and mothers are killing their autistic children is not admirable. It’s cowardly and it’s dangerous.

I’m judging.

I’m judging because if I don’t, I tacitly approve the conditional devaluation of human life. And I’m not willing to do that. I’m not willing to stand by in silence. I am not willing to allow anyone to believe that no matter how difficult my life with my autistic daughter were ever, ever to become, that it would be okay for me to kill her because caring for her is hard. I am also not willing to allow them to believe that it would somehow be understandable if I were to kill her because her life is hard and death would be a better alternative.”

It has taken me a long time to realize that judgment is not only not inherently wrong, but rather is absolutely imperative if we are to advocate for our children and to support one another honestly.

That does not mean that we are judging one another’s hearts. But even the purest hearts can wound when they don’t know better. Mine has. And when it happened, it hurt like hell to hear it, but I remain deeply grateful to have been called out so that I was given the opportunity to reflect, do better, and then share.

8 thoughts on “in this together

  1. I remember the first time I read your column about judging (those abusing women, killing their children) and how jarring I found it, how thoroughly I had bought into the concept of not judging anyone and being tolerant of everything and so open minded my brain had fallen out. You really woke me up then, and gave me another wake up call this morning. There is a time to stand firm, to speak out for what I believe in and for those unable or unwilling to stand up for themselves. I am thinking about the word broken, to describe anything except inanimate objects waiting to be repaired and maybe the human heart, I have to think some more about that. I need to be willing to be taught, to be corrected when I am in the wrong, to think that I am never done growing and learning. Thank you for such a big message early on a Monday morning. Oh, and your title has the theme from High School musical stuck in my head (thanks for that, not so much)

  2. Reblogged this on Spectrum Perspectives and commented:
    It’s not about us. It’s about doing right by others, exercising care, and accepting that we make mistakes when we don’t mean to. And when we make those mistakes, we do our best to own them and change, not defensively react. Hard, but necessary.

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