From the earliest days of parenting my hyper-colicky, needy newborn, to first identifying that he was walking a different path than most infants his age, to sorting out what supports and language would work for our family, and muddling my way through my own emotional transformations, I've evolved into what many people call an "Autism Parent".
For reasons that I'm not going to wade into too deeply at this time, this is not a term that resonates with me. Nor are the 'co-morbid' terms that seem to accompany it like 'Warrior Mom', 'Super Mom', etc. I guess I'm just not nuts about "describing myself in terms of my child's disability", his Autism "doesn't define me"...labels are for soup cans, right? (*note: sarcasm)
But that's a post for another day.
Today, I want to talk about something closer to home. Because, like it or not, being the parent of a child with a disability does carry with it an element of identity. To say that it has not been significantly impactful- possibly more so than any other role in my life- would be an outright lie. This is my reality and it is one that embrace wholeheartedly. I am proud of the parenting journey I am leading and I am proud of the advocacy efforts I am making on my son's behalf.
But let me get one thing clear: I'm not in this for the "cool" points.
Parenting is a life-style that leads to the formation of many cliques. There are the attachment parents and the mainstream parents; here are the breastfeeders and the formula feeders; there are the homeschoolers, the private schoolers, and the public-schoolers...
And, as inevitably is bound to happen, within each subcategory, sub-cliques of their own also form.
Or so has been my experience as an "Autism Parent".
Many have written about the need for unity within the Autism Community. Unfortunately, we can't seem to agree on what that unity should look like.
So there are those that are anti-vaccine.
And there are those that are seeking a cure.
And there are those who believe in strict and comprehensive therapeutic approaches.
And there are those who rage against labels, argue for more funding for families, or believe wholeheartedly in telling the "truth" (or at least their version of the truth) of what Autism "looks like".
And some of these groups are way larger than others. Some of these groups dominate the figurative "high school" that is the Autism Community.
There is the "in" group and the "out" group.
And these two groups have distinctly different agendas.
Perhaps one of the most defining aspects of the "Autism Community", or- one could argue- of the Disability Advocacy movement as a whole, is the fact that, unlike other social movements, the dialogue within this one is predominantly voiced by those who are indirectly affected.
The parents and the 'professionals'- medical, scientific, therapeutic and educational- voices outnumber and outweigh the voices of those that they represent in a way that is bordering on comical.
When looking at previous civil rights movements- whether it be feminism, racial equality or gay rights- the propelling force of the movement has always been from the people actually within the oppressed groups.
Let's be frank- it wasn't men who, out of nowhere, suddenly said: "Hey, you know what we should do? Give women the vote. Maybe for Mother's Day? They'd like that."
It wasn't white people who rallied and protested racial segregation.
It wasn't a bunch of straight people who thought to themselves that gay marriage should be a 'thing'.
Certainly, there were people from outside these groups who worked tirelessly on supporting the movements. But the driving force? That came from the inside.
In fact, I suspect the world would feel extremely uncomfortable at the idea of the formation of a gay rights advocacy group that was comprised of almost no LGTBQ members.
As a cisgendered, white woman, I am extremely aware of where I sit within the various social movements that I support. For the most part, my job is to agree and support the work being done by the self-advocates. I can not speak of the experience of a visual minority- but I can let them speak, and treat them as equals. I can support politicians and organizations that are also receptive to these messages.
It is my privilege to not be a part of the problem, and to do my best to be a part of the solution.
But I probably am not going to come up with the solution, because I am not living the reality and can not comprehend the complexities within it.
And, as an able-bodied, allistic-identifying (ie: not identifying as an Autistic person), I see my role as being largely the same.
My role is simple:
To actively support the rights of Autistic people by elevating and amplifying their voices, by supporting organizations that are modelled and led by Autistic people, and by recognizing that my experience- as an Allistic person- is completely removed from the actual lived experience of an Autistic person.
Basically, to use an incredibly cliched phrase: I need to check my able-bodied privilege at the door.
Because parenting an Autistic child is not synonymous to being Autistic, the same way that being the parent of someone who is homosexual does not make me, a heterosexual, understand what it is to be gay.
I can be an advocate for gay rights, but I can not be gay.
I can be an advocate for Autistic rights, but I can not be Autistic.
Seems simple enough, right?
Except that apparently it's not. Because, as I mentioned, in the Autism Advocacy movement, Autistic people are not dominant voice.
Overwhelmingly, the dialogue is being dictated by parents who have co-opted the movement as their own.
And they are this high school's 'popular' kids.
If you don't bow down at their feet, you are outcasted, slandered, shamed, attacked and vilified.
This is true if you are Autistic. And it is true if you are a person who believes that Autistics should be the voice of the movement.
As a parent of an "it's Autism...or something like it" kid, long before he was officially diagnosed, I already felt lost in this world. None of the articles and blogs that I had been introduced to resonated with me. I could not grasp why- if I wanted to better understand my son- my main source should be parents who were just like me, albeit slightly further in the length of their own journeys.
I was introduced to many writers- some of whom every so often offered me snippets of hope that I wasn't fully alone in my unconditional acceptance and adoration of my atypical child.
But nothing really stuck with me...and so I went on and did what they advised me to do...and started working on the therapies that I'd be 'prescribed' for Sam...
And then this post changed my life: Quiet Hands.
This remains the most important piece of literature I have ever read.
Here was a woman, who was like my son! And she was telling me to STOP what I was doing and listen. She was saying "When you do this...then I feel this"- and what she was describing was torturous.
Immediately, we hit the pause button. We re-evaluted absolutely everything. We asked ourselves the question: "When I do this...what does it feel like to Sam?"
And I began to understand what it was that I was missing. I was missing them- these voices- the adult voices of my non-speaking child. I was missing the Autistic in the Autism movement.
Quiet Hands was followed by a series of equally impactful posts, in particular this one that still haunts me to this day: Here, Try On Some of My Shoes.
These were the shoes of an Autistic adult. And, despite the very different lived experiences, the shoes looked an awful lot like the shoes my son could have worn, in another time, in another family.
And something inside me finally broke. I had had enough of being quiet. I could no longer pretend to be something I wasn't. I could not longer allow myself to be part of the problem.
So I wrote a response to Shoes. And that was the first day I chose to become an "Ally".
And I never looked back.
But here's a little secret: Sometimes I suck at being an ally.
This is not because I want to. It's definitely not because I try to. It's simply because I don't know what I'm doing. I am still fighting against 33 years of deeply ingrained stereotypes, myths, and lies that I have been fed by the media, the medical community, 'advocacy organizations', and the world.
I have to undo all the misinformation that is firmly implanted in my head.
So sometimes, I mess it up. Badly. And I get called out for it.
As I should be.
Because the road to hell is paved with good intentions. And even if I don't "intend" any harm, it doesn't mean that I can't cause harm.
Today, I read a blog that called out 'Ally parents' out in a way that I hadn't seen before.
It upset and angered me, in large part because this was from one of the first bloggers that I really respected and related to when I was a new 'Autism mom'. She was one of the bloggers that inspired me to write. She was one of the few bloggers that I actually thought 'understood' why it was so important to put Autistic voices first.
"I'm seeing a trend toward some of the self advocate allies to soak up words from autists with nearly cult like fascination and immediately apologize should they (the ally) ever step out of the dictated lines.And while I seldom call out actual blogs or bloggers personally, and- as I said- there is a lot that she has written that really resonates with me and has been impactful in my parenting, I feel that I need to respond to this particular section.
You know what I call my "allies?" Friends. We bicker, disagree and debate. In private.
Is that what we want? Really? Do we want to attack the very parents who are raising autistic children? Those who will be the next self advocates? How do you expect any progress to be made?
We have reached a point where debate is no longer allowed. We reached the point where talking about the hard things isn't allowed and to do so results in vilification and condemnation."
I am the 'self advocate ally' being discussed. I absolutely "soak up words from autists" with a passion and vigour. Is it cult-like? No. Would she describe it as cult-like? Probably.
Because - yes - every so often I step out of dictated lines (let's call this line: "Don't Be An Ableist Asshole") and I crawl into a dangerous places ("Ableist Asshole Territory") and I become exactly the kind of person that I am trying to fight against.
Instead of elevating people, I pull them down. Instead of promoting acceptance and inclusion, I promote fear or anger.
And the worst part of it is that I just don't see myself doing it.
I am so blinded by my own privilege (able-bodied parent) that I forget that this isn't supposed to be about me.
And that's wrong.
So I back the fuck up. And I grow from it. And I get myself back on the right track.
Because that's the right thing to do.
It sure as hell isn't popular. It's pretty much the furthest thing from popular in the world actually.
But it's the right thing to do.
I have befriended many Autistic adults. Some of them are people that I desperately wish I knew in real life. We have formed deep and meaningful connections.
And yes. We've disagreed. In private. Because we're friends.
But the fact of the matter is that- when it comes to Autism Advocacy- I'm usually in the wrong. And when I step back and reflect on that, I see it crystal clear.
But I have NEVER been attacked. I have NEVER been abused. And I have only witnessed (over and over and over) retaliation and self-defense from this group.
I'm sure some people don't like being called bigots.
They should stop being bigots.
If a racist doesn't want to be called a racists, they should stop being racists.
And if a homophobe doesn't want to be called a homophobe, they should stop being homophobic.
I don't do what the Autistic self-advocates say because I am scared of them. I don't follow them because they are the cool kids and I want to belong.
I follow them because they are right. And if I want to be their ally, I need to let them dictate the terms.
The irony of a post about unity and not "condemning" or "vilifying" each other while simultaneously actively mocking parents like me for wanting to grow and become better people is not lost on me.
And in a perfect world, everyone in high school would get along. And there would be no cliques. And we would all be united.
And I guess the same can be said for the perfect world of Autism advocacy.
But the thing is, I didn't want to hang out with bullies and jerks in high school. It was never my thing. And if being a united front meant that we all had to become bullies and jerks just so we could get along, I wasn't interested.
I guess as much as things have changed for me, that has remained a pretty fundamental value.
I'm not in this advocacy thing for the cool points. I don't care if we all get along. I care about doing the right thing and making change in my child's life time.
And if that makes me an outcast, so be it.
History wasn't changed by a bunch of people who cared about 'getting along'. It was written by people who cared about doing the right thing.
Even when it isn't popular to do so.
And no matter how many times you tell me that 2+2=5, I still am not going to agree with you. Because it doesn't.