wherever you are

Yesterday, I wrote a post detailing a conversation that I’d had with an autistic man regarding the Autism Acceptance magnet on the back of my car. If you haven’t yet read it, I’d be grateful if you’d take a moment to do so before continuing so that what follows will be in context. Read the post here.

My dear friend M at Invisible Strings left the following comment on that post:

i appreciate your willingness to interact with him the way you did. if this gentlemen were to go online, interact on blogs and social media, and express his current feelings…he would be shouted down, accused of being a terrible person for not being on board with the pride angle. some people get mired in depression and/or self-loathing…they internalize feedback from the rest of the world and end up believing that their differences are something to be ashamed of; but the online communities are often very toxic for people who are in this state; it’s almost like social media is a great place…on the condition that you’re doing well, in a good place emotionally…but it’s a pretty destructive place for those dealing with depression, self-doubt or other co-morbids. many people emphasize pride in an effort to push back against all of the negative reactions from the world, which is good; but i worry we also create an inhospitable environment for people who are negative for other reasons. for people like the one in this post, i never know what their options are; the world feels hostile to them, and online communities can be just as bad. it’s frustrating…hurt to read this, but in a good way, it’s just something that needs to be discussed more often. thanks for this.

I was overwhelmed with sadness in reading M’s comment. I wrote back.

The options are people like you. Your blog, which would be a place where he’d recognize himself in your former experiences and where he’d be welcomed, understood and gently befriended. So there. ūüėČ

I thought of how many people have done just that – seen themselves (or their autistic loved ones) in M’s experiences and, in so doing, begun their own journeys to acceptance, celebration, pride in who they are.

He responded:

i think about this a lot, because 1. this guy was me 10 years ago, as you know and 2. i get emails from people like this every now and then; usually they are pretty upset and describe how much they hate…well, everything; themselves, the general discussions that happen online.

and i can’t tell what helps…the ones i hear from, usually are very shut down, they criticize the idea of self-acceptance, then i never hear from them again. i don’t really have a point, i just liked this post, it’s one of those topics that i think about repeatedly. your posts tend to have that effect.

Hours later, I was still chewing on the conversation. On the fact that it can be really hard to come out and say, “I can’t imagine being proud of my autism,” without others hearing, “How dare you be proud of yours.” But he wasn’t saying that. He wasn’t damning anyone else. He was just saying, “I don’t see it.”

Essentially, what he told¬†me was, “My experience so far (and my understanding of autism vis-a-vis that experience) has been almost exclusively negative. I don’t understand how I¬†could possibly view positively this thing on which all of my challenges seem to so clearly rest.”

And, as I told him, I get that. It’s got to be hard to imagine embracing the concept of autistic pride from the perspective that being autistic is your¬†problem rather than from the perspective that the lack of understanding and accommodation of ALL types of neurologies is¬†a societal¬†problem – and one that a whole lot of your compatriots and allies are¬†working on fixing.

I understood¬†because I’d been there, at least from the outside looking in. I’d been in that place where I couldn’t imagine there being anything positive in any of it. A place where all that I (thought I) wanted was to eliminate autism in order to eliminate my kid’s seemingly insurmountable challenges. A place where I was missing the forest for the trees.

While I feel like I’m throwing a lot of words at this to little avail, one of my favorite readers, Mercy, did a far better job of it yesterday. This is what she wrote: (Note: Although Brooke doesn’t have Asperger’s specifically, it still applies.)

i wish all aspies could see that the problem isn’t them and their asperger brains.. the problem is with the world and their lack of acceptance of asperger brained people. he doesn’t not have the job he wants because aspergers makes him not good enough. he doesn’t have the job he wants because people don’t accept his aspie ways. the fault is with them, not him. I wish all my fellow aspies could see that, so they don’t have to hate and blame themselves and instead can demand acceptance and a change in social attitudes so all the aspies and auties yet to come can live in a more open, tolerant and understanding society. change the hole, not the peg.

How could the gentleman at the gas station NOT feel badly about autism when, throughout his entire life, he’s been told that society — the hole — is incontrovertibly right and he — the peg — has to be¬†wrong? Not incidentally, one of my all time favorite quotes is from Paul Collins who says,¬†‚ÄúAutists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.‚ÄĚ

And what happens to these folks Рthese world-weary, beaten and splintered pegs (or those who love them) when they try to reach out and end up feeling even more frustrated because someone further along in their own journey thinks they should be too?

Years ago, Katie and I went on a hunt for a church to call home. It’s a long and somewhat complicated story, particularly ¬†given that I’m Jewish. If you’re just dying to hear it,¬†I’ll let you hunt through the archives to find it, but it’s not really relevant here.

After months of searching, we finally settled on the UCC.¬†In large part¬†because they define themselves as an open and affirming congregation, practicing what they call an extravagant welcome, but also because of their ¬†slogan, “Never place a period where God has placed a comma.”

No matter where you are¬†in life, no matter where your faith journey has taken you thus far, even if¬†it’s to avowed atheism or agnosticism, you’re welcome there. That was why we chose that place when seeking a spiritual community.

Just as Katie and I showed up at the UCC hoping to figure some things out while those around us seemed to have it all down pat, people come to places like Diary (and the Internet at large) every day at radically different places in their lives. Just as with our individual faith journeys, some who come have embraced and celebrate neurodiversty¬†wholeheartedly, some have taken as their mission the spreading of¬†the Good Word of acceptance (as edioval so delightfully put it yesterday), and some still aren’t so sure. Still others still believe (and may always believe) that autism is the source of all that ails them.

All that we can do is to offer an extravagant welcome to each and every comer. To be open to different perspectives, respectful of the fact that we’re all at different places on our journeys, and to make sure that we never put a period where a comma should be. After all, my mantra “now is not forever and never is a load of crap,” doesn’t just refer to what our kids may or may not be capable of someday; it pretty well describes human evolution as well. “I don’t see it” might just be, “I don’t see it now,” or “I don’t see it yet.”

When I go back to that gas station, I’ll be looking for that man again. And I’ll welcome him to join us here whenever – if ever – he’s ready.

 

 

 

 

8 thoughts on “wherever you are

  1. I love the way you put this:

    “All that we can do is to offer an extravagant welcome to each and every comer. To be open to different perspectives, respectful of the fact that we‚Äôre all at different places on our journeys, and to make sure that we never put a period where a comma should be.”

    It applies to so much in life.

    Love you,
    Mom

  2. Hey, Jess. I commented on your fb post a few days ago, but figured I would try here. From a fb picture of Katie after a chorus concert, I figured out what middle school she attended (right next to the one I attended not so long ago!) Anyways, I assume she is going to the high school right down the street (i just graduated from this one!) I have a handful of high school friends who are underclassmen and are very interested in theater. If you ever have questions, I would be happy to answer! ūüôā

  3. Damn, this is so good. Thank you thank you. A funny irony to this is that I’ve been aware of your blog for some time, have seen my friends liking your posts on Facebook now and then, but in the past when I’ve visited I guess I just wasn’t ready for your story – I can’t even remember specifically why.

    My 5 year old son and I have both been diagnosed with autism in the past few months, and though we are now whole heartedly on board the autism acceptance train, I’m sad to say we weren’t always. And to be completely honest, it’s been a LOT easier for me to practice acceptance with my son than with myself. It frustrates me at times that this whole self-acceptance thing still has to be a gradual process, because I want to just be *there* at that magical destination where I fully accept myself. But loving your kid is a lot easier than loving yourself, as lots of parents (autistic or not) know.

    But I have to remind myself to keep this all in mind when I talk to other people online. I know that I have the “zeal of a convert” when it comes to autism acceptance and can sometimes be hard on people who express pathologizing or otherwise negative views of autism. It’s a tricky thing to fight the good fight but also stay soft hearted and compassionate. I think you express that balance so well.

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