Outside of the Weigh In Wednesday posts, which are pretty innocuous, I haven’t blogged much lately. I thought maybe I had a bit of writer’s block. I think, though, the truth is that I developed something of a writer’s phobia.
Over the past year – and particularly the last couple of months – I’ve watched the train wreck that is blogging in the special needs communities. The communities tear themselves apart from the inside out: parents vs. self-advocates vs. anti-vaxxers vs. non-parents who have opinions vs. ableists vs. people who don’t “check their privilege” vs. you name it. It saddens me deeply.
It also scares me, because I truly believe that this in-fighting – and it is in-fighting – is the biggest obstacle to acceptance, inclusion, (honest) awareness and support for those whose development follows a path less traveled. Instead of amplifying each other’s voices to a volume that can no longer be ignored by people with some real decision-making power, we drown each other out and reduce our arguments to a trash heap of fallacies, non-sequiturs, false analogies and ad hominem attacks. In the end, the very constituencies we wish to persuade dismiss us as nothing more than a group of trolls. In too many cases, rightfully so.
I mostly stay out of the fray other than a few occasions on which someone(s) launched a very targeted and unnecessarily personal attack against bloggers I know (in some cases, in “real” life, although let me be clear that my online friends are very, very real to me). Even then, there were times I didn’t come to someone’s defense when I should have, because continuously pleading for respectful discourse and reasoned debate on the Internet is kind of like banging your head against a wall because it feels so good when you stop. Rational argument isn’t fun, I guess. It requires actual work – research, analytical thought, critical reasoning. It’s easier to lob around opinions masquerading as facts and to hurl insults and accusations. Why bother with evidence when you can scapegoat someone?
Ultimately, the vacuum of conflict made me afraid to blog. I started this blog as a gift to myself – a mental outlet for all the stuff on my mind. I didn’t intend for it to become anything specific, let alone autism-specific. I just wanted a space to word vomit and maybe get a little dialogue going. If I helped someone in the process, even better. Ultimately, though, I both wanted and needed this to be a safe space. By safe, I don’t mean necessarily conflict-free. But, by safe, I definitely mean free of unrelenting personal attacks either in the comments here or elsewhere on the interwebs. So, I laid low. Way low.
However, I made two super-rookie mistakes yesterday. First, I read the comments on a Huffington Post article about the Disney guest assistance program. I learned that my husband, my son and I are apparently “entitled” because our daughter/sister is autistic. I guess that’s true if by “entitled” you mean that her father and I have the privilege of carpooling her to six different therapy appointments each week (her attendance at which effectively keeps both of us underemployed), living in a school district that completely lacks the resources to educate her, constantly struggling to find social activities in which she can actually and meaningfully participate, and facing the very real possibility that she will require care for the rest of her life with the knowledge that her life expectancy is far greater than her father’s and mine. I am pretty sure the only thing that “entitles” us to is some mother-effing compassion. But, you know.
On the heels of this mistake, I read a blog post by an autistic adult blogger whose writing I hadn’t previously read. The post (to which I am deliberately not linking) is a critique of Facebook, Twitter or other social media “cliques” (this was the blogger’s word), which the blogger described as groups of people who routinely comment on, share or otherwise promote each other’s writing. The conclusion drawn by this blogger is that these “cliques” either formed with the intent to or evolved in purpose to exclude others. I think – and I could very well be wrong – that the implicit presumption the author makes is that these “cliques” not only do not include autistic persons but actively seek to exclude them (or their points of view).
As it happens, I have a circle of blogging friends who meet this author’s definition of a clique (with the notable exception that the circle does, in fact, include autistic persons and, hence, their points of view – which may or may not be those of the author above), and I have a couple of good reasons (which are not germane to this conversation) to believe this blogger referred to that circle. I’m not obligated to justify the group’s existence, and I won’t. But, the stupidity – yes, STUPIDITY – of even rhetorically raising and “debating” this as an issue made me very, very mad. So, I am going to talk about the group for the benefit of parents and caregivers who find themselves in need of support.
The ways in which this particular circle of people found one another are as varied as you can imagine. The ways in which our relationships developed and grew or diminished over time are equally varied. The composition of the group doesn’t change dramatically, but people come and people go. The relationships formed organically and out of commonalities that go well beyond shared parenting experiences. As human beings (regardless of neurological status) we found a way to embrace mental, physical, financial, gender, racial, ethnic, stylistic, political, religious – and, yes – neurological differences that shatter the limits your typical “high school” clique might find socially tolerable. There was no pledge class, no hazing, no secret handshake, no application. Sometimes, people just find each other and chemistry does the rest. There is nothing wrong with that.
Perhaps more importantly, however, this social circle is not simply about blogging. We’re not in it to up our shares, likes, views, traffic or drown out any category of voices with a blog. I know this might be hard to believe, but our lives are a little too full of responsibilities to spend our precious time conspiring to crowd anyone out of the LIMITLESS Internet. Rather, this social circle is about support – emotional, physical, practical, intellectual, economic, potentially life-saving support. We don’t just share one another’s writing; we share our lives. We are friends. We love and trust each other. So it leaves me to wonder: Why – in the name of bacon -blueberry pancakes and all else holy – and especially in the wake of the recent tragic deaths of autistic children at the hands of parents who came to the dark, dark place that made such an unthinkable action seem like the only course – is this a thing? Why would anyone (and especially an autistic adult) look on a group of special needs parents supporting one another’s efforts to not only raise children but to raise awareness, encourage acceptance, enhance diversity, and increase opportunities as something that at best is high-schoolish and at worst is sinister? Why would this be anything but positive?
The one-two punch of these mistakes had an upside for me. I am done wearing kid gloves. I will not walk on eggshells or fear my own shadow to avoid “offending” someone who will use any excuse – even a parent support group – to pick a fight. I will not be bullied into silence. You will not make me afraid to say what I came here to say, because my experience – the truth of my experience – may let another person know he or she is not alone. It may be the difference between reaching for help or reaching for an end. You can hurl all the accusations you want at me – I’m ableist, I’m a bad parent, I’m abusive, I’m privileged - I DO NOT CARE. Right now, all I want is to reach through the fog of your words (which I know are really your hurt – and when you’re ready to talk about that, let’s do it) and find that mom, that dad, that grandparent, that caregiver, that therapist, that teacher, that aide who has run out of gas, reached the end of his rope, hit her wall. To you I want to say: I know you need support. I know that parenting/caring for/teaching a special needs child is hard. I know that people you trust will let you down. I know you will be criticized from all directions.
If you are here for me, I am here for you.
If you will listen to me, I will listen to you.
If you will not judge me, I will not judge you.
If you will help me, I will help you.
Welcome to my clique.