"the place in which we find ourselves in is always one of negotiation..." part 3

I am Black.

I am not ambiguously Black.

I am Blackity Black Black.

Turn up the exposure and see me clearer in the photo. I’m that Black.

Blue Magic, tame the kitchen, Black.

From the American South.

Born.

Raised.

Still reside.

I will never let someone who has never lived this life, this my life, try to teach me what harm is, or define for me what a hate group even looks like. You aren’t telling me anything new when you bring up Autism Speaks as a hate group. You’re not revealing some buried truth when you say “they want to cure autistic people.” I live this. These regurgitations, these soundbites—they hover around me, around my people, around my family. It’s not news. It’s noise. And I’ve heard it all before.

My life—my Black life—is peripheral to whiteness. I know the dynamics. I know the rules. I know the cost of navigating this world that wasn’t built for me. But I also know that I have to know what you think, feel, and do to move about your world. Because I have no choice. I have to survive it. I have to know your thinking, whether it makes me sick or not, to figure out how to get through another day.

It isn’t lost on me that the majority of those who shared similar thoughts to mine regarding the Autism Speaks closure were PoGM. I’m not surprised by that. They see the world the way I do, the way many of us do, because we’ve been there. We’ve been in the room. And I’m not surprised by the shallow, unnuanced takes from people who have never spent enough time in those rooms, with folks like me or my son.

I have sat in those rooms. I’ve lived in them. I know what they experience. I know what those rooms sound like, what they feel like. I listen to their thoughts. Their struggles. Their pain. Their hopes. At every roundtable. Every presentation. Every zoom call. Every keynote. Every workshop. Every message thread.

I sat in the fucking room.

I brought my own experience to the table, and I carried theirs when I left.

I let far too many of you pull me into a place of defense for my decisions and my history. I had to lay out exactly how an organization helped me and my family in the past that I don’t even recommend to families in the present (granted, I don’t recommend any). I had to justify my choices, even though they weren’t perfect. I shouldn’t have to explain my past choices to you. It’s not for you to judge.

So many of you haven’t had meaningful conversations with historically ignored populations and it shows. You come with claims of harm and hate and nothing else, you are shut down before you sit down. Because you talked down to us. Because you behave as if we aren’t discerning enough in our existence to ascertain what harm or hate is.

Even I, have difficulty in those spaces, because I know that so very many of us, the first resource they ever get…is Autism Speaks. The first social events they attend? An Autism Speaks walk. The first resources and materials they get? Autism Speaks. The first phone calls for care came from lists they got from Autism Speaks. Many have connected with support groups through them. They visit their site, read through their tabs of information and causes…and for so many, they won’t see the flags you raise. Not today.

And so, if you want to reach them, you have to talk differently. You have to meet them where they are. I carry my history, my people’s history, into every room I enter. We’ve known harm and hate from a young age. I’m not going to erase that.

I read so much about how Autism Speaks didn’t do anything that warranted anyone missing their absence, but also how they were the boogeyman who did everything with every hand in every jar. Who they are and what they do (or don’t do) shifted depending on who you interacted with.

I am told over and over again, “they want to cure Autistics.” Our last year at an Autism Speaks walk was when we walked into the resource fair and saw a large upright tube. We soon learned it was a hyperbaric chamber. I believe they actually lie in them but I think it was easier for them to display it upright. I didn’t grab the pamphlet about it, but listening to the lady talk about it made it appear as though my son were going to walk into the chamber and come out on the other side of it a new person.

Having learned more about it over the years, I understand why some would feel as though it would help with a large number of some of the struggle areas Autistic individuals have, but I don’t know that this is something I would do. And they had the absolute worst spokesperson there explaining it.

So, I am not unfamiliar with the claims of cure, but many within my community are. They didn’t have autistic children when they were wheeling in hyperbaric chambers into the middle of large rooms during resource fairs. They weren’t there for the ads. They didn’t have children then. The impression they have of Autism Speaks, is vastly different from the unpleasant side I saw many years ago. Do we have the capacity for change? I think humans most definitely do. I am not so sure when it comes to organizations.

Having said that, when it comes to cures, there hasn’t been one month of my life that I didn’t have one day where I felt as if my life would be worlds better if I had a cure. Every day. I’ve wondered, more times than I can count, if my life, my family’s life, would be better if I could just fix this. If I could cure the parts of me that struggle. Would I turn it down? I don’t know. Maybe. But maybe…I wouldn’t. Maybe I’d leave it on the shelf. The thing is, I could walk away from that cure, because I’m not locked in like my son is. His struggles are constant, relentless. He’s trapped in a body that doesn’t do what he wants. He’s locked in his own mind, unable to escape. That’s a different kind of pain. If he came to me one day and asked for a cure, I would burn the world down to get it for him. I would tell everyone who disagreed with me that I love them, but they need to step aside.

Because autism isn’t something that exists around him. Autism isn’t something that is made exponentially more difficult because of his environment. He is literally in the way of himself. He gets in his own way. His body locks him in. Movements not his own. So much held in his head he cannot get out. Not the joy, not the love, not the pain…it’s locked within him. It isn’t often those like myself who want a cure, and there is a reason for that. I am locked periodically, occasionally. But not always. My son has been in there for the whole of his short life. I do not know how he will manage the whole of a long life.

Cure is a tough, hard conversation. And many don’t have it because it’s an impossibility. People can rage against it because its just a theory, something not real. And others can long for it knowing they don’t actually have to make the very hard decision on whether or not to get it.

Choice is so very important. It is a human right that so many do not have access to. But choice is also one of those things that cause high emotions in those who would choose differently. You pull choice from another; you tear a part of themselves.

Whether many are willing to admit it or not, organizations like Autism Speaks, the National Council for Severe Autism, and others are speaking to a community that the so-called mainstream autism advocacy has long disregarded. I’ve said this before, and I’ll say it again—there’s a truth in this that cuts too deep for some to hear. My son has been called "not autistic," accused of being something else entirely, and told that "autistic people don’t look or act like that," far too many times this year alone. And yet, I ask—how far have we truly come if there are people out here who can’t even see the autism in my son?

I’ve seen it with my own eyes, too. I’ve watched others experience the same dismissals, the same ignorance. I sit at this intersection, caught between those who refuse to believe that my son is autistic and those who believe it, but still fail to address the very real issues that dominate his life—issues that impact him daily.

And what about the families like ours, struggling to find the care, the companionship, the resources we need to support our children? Who’s giving space for us to voice our concerns, to lay bare our struggles? Who’s listening? Where is the advocacy that truly sees us, the ones who are too often forgotten in these conversations? You can’t talk about autism and leave us out of the picture, not if you actually care. Not if you really see the people you claim to serve.

“…the place we find ourselves is always one of negotiation.” This Baldwin quote sticks with me throughout any discussion I have on advocacy. Because this is life for so many of us. We don’t access perfect. We don’t get exactly what we need when we need it. We don’t get a whole resource. We get imperfect, jagged, and rough…missing pieces we have to put together with other broken pieces. We get things others get so late that we can only take advantage of them for a moments time before our age creates a ceiling. Our lives are a series of bad and not as bad paradigms. You don’t get to judge us for that. What you do get to do is help. But it’s easier to judge. To scream. To talk down. And so, that is the pocket you sit.

All I ever wanted to do in this world was purge the thoughts that float around this head of mine that detail my existence within the tension of this world. I didn’t want to be praised for what I share nor condemned for it. I am a product of my histories and contexts and most didn’t want to take a deeper dive into my waters. So, I have to pull them to the edge.

Everything we do, everything we experience carries layers of complexities. Humans are complicated period. I don’t make this easy for anyone, not even myself. I gentrify my existence for no one. I will not make my life palatable for those who prefer a crisp narrative. I will complicate every movement.

As I should.