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This newsletter rests at the intersection of the unserious ramblings of a woman full of buttered rice and dad jokes and the somewhat sophisticated stories and essays of someone who knows just enough “smart” words to sound super intelligent and insightful.
What will today’s newsletter be? Hmm…
Nothing about us without us.
I remember the first time I saw this. I was in what would be the last online group I would ever participate in, be it Autistic led or parent led.
The way it was used bothered me.
Wielded as a weapon to carve the parent it was directed at out of their child’s life or position them as little more than a footnote to their existence.
The backseat passenger to their taking the wheel of their child’s life…
because they shared a diagnosis with this parent’s child.
Stranger to them in every single way, except that one part.
I thought, “perhaps this was the only person who would use this phrase in such a way”?
It was not.
Time and time again, it was used in the same way. Not all the time.
But enough times.
I know what I feel it to mean. I don’t understand the way that so many use it.
This way of shutting down conversations. The elevation of their station in a child’s life because they feel their parents to be inadequately equipped to care for and parent their own children always struck me as odd.
And honestly, a crappy way to advocate.
You want ppl to understand where you are coming from when you tell your story, not attempt to tell theirs as well as insinuate that they barely know their own children.
Again, I know what I feel it to mean. What I feel it should mean. I just don’t understand the way in which so many use it.
I am raising a child who was diagnosed before levels, but would be considered “level 3” within 2 seconds of meeting him. He requires whole body care, whole body assistance…around the clock. He does not speak so his wants, needs, desires…often play out in his behaviors. They show on his face. You can gauge his mood within his hands. Or the intensity of his spins. You are constantly having to read every single bit of him, from toe tip to hair. At all times.
This is what he requires of someone who cares for him most of his life. And we don’t always get it right, but he knows that we try and he knows that his parents are the ones that are going to do this with the most consistency.
This is what is required of us to do.
And it is required of us to teach those around him to do the same.
And to find someone who will carry on in the way we do when we no longer draw the same air he does.
Every single Nonspeaker I have come across and held discussions with intimately, will tell me that their parents are integral to their lives. They would not be where they are without their love, guidance, and support. They wouldn’t be able to tell me the things they do without the fight of their parents.
I do not desire a community that disregards the importance of parents, or attempts to push them aside within this community.
I also do not desire a community that would disregard the voices of Autistic individuals. And this happens often.
I do not know of any period of my life in which the concept of community has been more complicated than when I found the Autism community online. It was complicated enough offline, but online it’s tangled in knots. Now, you can reach people across the world with a single login. People from all walks of life. People from different backgrounds. Different circumstances. Unique situations. Voices that feel muted in their everyday real life, have found their tongue in virtual spaces. And I don’t know if we know what to do with that.
People do not give “community” the reverence it deserves.
Community feels easy. Simple enough to understand. At the heart of it all, it speaks to our connection with others. And it’s not really that simple.
Connection is at the heart of community. We often think of a community as the environments its people gather. School. Church. Neighborhood. West Texas. Online Autism Community…or an online Actually Autistic Community.
Community describes the people and the connections they form with one another. Those relationships are the foundation of a community.
We don’t often think about how complex a community is. And this is why I never felt as though I had a home, a place to belong. Especially not within an online Autism community. Because many don’t realize that communities are composed of individual people, and its people are complicated, their individual needs are diverse, and as a result, any relationships we build with one another will be complex and multilayered.
I often think of the parents and the Autistic adults making up one OVERALL Autism community, alongside professionals, therapists, researchers, etc. All those whose lives are touched in some way by Autism. If I want to talk specifically to parents, I will state as such. When I want to talk directly to Autistic people, I will state as such. But when I want to talk to both, I tend to say “community.” And that is it.
In terms of social justice, community is a process. It’s the coming together of people who work together in solidarity with one another to produce change for everyone within that community. Community is central to this work because we could do far more together than we could apart from one another. Community is solution-driven.
I am perplexed that an advocate would be so confrontational with others within this community when we need EVERYONE. I need Autistic voices. I need to hear from parents what it is that they need to adequately care for themselves and their children. I need to hear from educators about the problems they face when there are Autistic students in their classrooms. I want to know of the solutions they have. I want to know how to navigate their education systems better so that I can utilize my talents to fight back. I want to know what researchers are doing and how best they can help with producing studies on spelling that can eventually lead to the day when insurance companies would cover it so more families would have access to communication. There are people with far less resources, far less access, lacking the skills and privilege necessary to bring these systems and those who maintain them to heel…they are in need of community to call upon.
Community as a process for social justice requires everyone.
I know what “nothing about us, without us” means to me. It is ensuring that every voice is heard. It is making sure that we are centering the needs of those that are most impacted by the fight we have chosen to take on, be it individually or collectively. I am valuing the voice of the Autistic individual and I am honoring the role the parents have in their children’s lives, not because the parents tell me of their importance, but because I have listened to their children. And because I am a parent.
“Nothing about us, without us”…should be a rally cry for inclusion, not exclusion.
A few years ago I found Nayyirah Waheed book Salt. One poem particularly has had an enduring impact on me.
some people
when they hear
your story.
contract.
others
upon hearing
your story.
expand.
and
this is how
you
know.
- Nayyirah Waheed
Since reading these words 4 or 5 years ago I've thought a lot about expansion and constriction, what it looks like to expand around my own pain and experiences (vs constrict), and what it looks like to expand and take in other people's stories and experiences. I also think about this in conversation a lot-in today's world we're having a lot of constricted conversations, and the expansive ones feel less common.
I was struck by your sentence, about how this sentiment is used as a way of shutting down conversations. "Nothing About Us Without Us" was intended to be about expanding the conversation to include Autistic voices. And yet it's become a call for constriction-- constricting the conversation to shutting out parents. I've also become a bit uneasy with the use of this phrase--how it is used to discard helpful information from professionals with decades of experience and perspectives coming from non-Autistic family members. And for me, it goes back to this idea of expansion vs. constriction...thanks for helping me make that connection today through reading your words. This was really poignant.