Autism Speaks is No Longer Searching for a Cure: Here’s Why That Gives Me Hope

Note: This is my personal view. It does not represent the views of any organizations with which I am affiliated.

Autism Speaks, the largest charity organization associated with autism in the U.S., announced this week that they would no longer be seeking a cure for autism. For those outside of the autism community, many autistic self-advocates have long been decrying Speaks’ push to find a cure, saying that the money should be spent on actual services for actual people, and that the “cure” language says their lives are not worth living. Especially within the neurodiversity paradigm, autistics understand that their brains cannot simply be rid of autism and still exist as their brains. Autism in inextricably linked with many people’s identities. So speaking of a cure felt like an attack on their selfhood. It said that because autistic brains are different, they are bad and should be eradicated, despite the fact that many autistics were loudly saying they did not want to be changed, they wanted support, understanding, accessibility, and opportunities.

Speaks has made many, many, MANY other missteps. Their unending focus on parents rather than people who are actually autistic, this horrific ad, the lack of actually autistic people on their board or in high up positions in the organization, the language they used around autism (epidemic, burden, etc.). It all adds up to a big ol’ pile of shit, and I have yet to meet someone who is autistic who hasn’t just said “fuck Autism Speaks, I’m out.”

So this rolling back of the “cure” language is too little too late for most people I know. I understand. It is a pretty pathetic attempt to win back the people you supposedly serve. I know a lot of people who are saying it doesn’t actually much, and that there is still absolutely no way that they will support Autism Speaks (especially without any apologies for previous mistakes). I am completely sympathetic to this viewpoint, and I also am not particularly interested in supporting Speaks.

But what makes me hopeful about this is not actually Speaks. What makes me helpful is that there have been YEARS of self advocates pushing for this change, without much response. It took years before people outside the deep neurodiversity community began to notice and understand the problems with Autism Speaks. So it gives me hope that finally, FINALLY people are listening. FINALLY the voices of autistic people were loud enough that the largest autism organization in the country felt the need to change. It may be a nominal change, with little in the way of actual money being moved to helping people, but we were loud enough that they couldn’t ignore us any more. They felt that there was enough pressure that they HAD to do something.

What this says to me is that we are growing more organized and more powerful. People are starting to take note. We have found some of the correct channels to reach the people who are most misguided. I am hearing more and more rhetoric that recognizes the value of disabled and autistic people.

It’s a baby step. It does not fix the past harms. We still have such a long way to go before people have the services, respect, and fulfilled lives that they deserve. But I see it as confirmation that we, the self-advocates, are doing what we should. I see it as a big old gold star that says “keep on keeping on. Change is possible.”

I want all of us to stop and recognize that for ourselves. We did this. It is small, but Speaks is fucking huge, and we made them budge. Oftentimes that first movement is the hardest. We can do this.

The Problem with “I Said Yes”

I’m currently engaged and also a compulsive Type A planning geek, which means that about 50% of my brainpower is devoted to wedding planning at any given time. Unsurprisingly, Facebook, Google, and every other ad service on the internet have figured this out, which means that I’m constantly getting very stereotypical wedding ads, aimed at brides who have bought into the wedding industrial complex a bit more than I have.

And holy hell is there a lot of disgusting, sexist expectation wrapped up in many of these ads. One that has been particularly grating on me for some time is the proliferation of items branded with the phrase “I said yes” or a variation thereon. I get that it’s a cute way to talk about getting engaged, and an exciting moment, but there are a lot (A LOT) (SO MANY) problems with it. Some of them are obvious, but others less so, which is why I want to unpack some of the ways this phrase encapsulates my problems with the way people approach marriage.

The most obvious issue here is that I have never once in my life seen anything marketed to a man that says “I said yes.” I’m really 100% over the idea that a. all couples are heterosexual and b. men do the asking, women do the accepting. It’s antiquated and sexist, and implies that women should not be in charge of their own major life decisions. Men take charge and ask the question, while women wait and respond. It’s a shitty message to send, and it’s also just inaccurate. Women can and do pop the question, and I for one do not like being erased from the narrative of marriage when I’m trying to plan my wedding.

Plastering the words all over everything makes it cute to be the person who isn’t making the decisions. It focuses the attention on the fact that the man asked and the woman responded, and it romanticizes the kind of helplessness that dynamic can embody. It says “the moment that there was a power dynamic in this relationship is the moment that was important,” instead of finding something that embodies whatever relationship created the proposal.

But what’s even weirder is that all the “I said yes” crap erases the person who did the asking (typically the man) from the wedding narrative, except as an accessory for a woman to live out her wedding dreams. I’ve seen very few “I asked” pieces of paraphernalia, and they are always paired with “I said yes,” which sends this message that the wedding is all about the woman (a sentiment echoed in approximately a million other places, and a sentiment which should go die in a fire). The man does not get to be excited about proposing, he clearly does not want anything that broadcasts his engaged state, and if he does broadcast it, it’s probably because the fiance made him amirite?

No, you’re not right. I happen to know for a fact that my fiance is pretty damned excited about being engaged and getting married. It’s just as sexist to expect that men don’t get to express excitement about exciting things as it is to expect that women don’t get to propose. I want my fiance to be just as important to my wedding as I am, because hey, we’re both getting married. We should BOTH be treated as equal parties in the planning process.

But those are issues that exist as part of the larger wedding industrial complex and the sexism it embodies. I have issues with the phrase “I said yes” for even deeper reasons. It took me quite some time to figure out what it was, but it I started to notice that I was using language contrasting being an “adult” with the way I felt about people who use the phrase “I said yes.” Now I in no way believe that people who get proposed to and say yes are children, as strongly evidenced by the fact that I’m intending to marry one of them. It makes complete sense that one partner will feel more assertive or want to make a big deal out of things and the other might not want to set up a big romantic thing, or would rather just respond. In most cases there will probably be an asker and an askee if there’s going to be any kind of formal “proposal.” That’s cool.

What makes me feel as if the whole “I said yes” business is somewhat immature is the fact that it focuses all of a big, important, life decision on one single moment rather than recognizing that it should (and for most people is) an ongoing conversation, in which both partners participate equally and discuss the ramifications of that big life decision. Acting as if two people actually really decide to get married in the moment of the proposal is ridiculous, and bringing the focus back to that moment again and again inflates the importance of it. Sure, I did a big, goofy proposal, but I recognized that it was a formality. I recognized that I was doing it because it was FUN. The actual proposal is not the mature, thoughtful, serious part of the “do we get married” discussion. It’s the fun, joyous, celebratory bit, and the “I said yes” obsession confuses and conflates the goofy, childish part with the actual, serious, “let’s decide what we do with our lives” bit.

Getting married isn’t a decision you make in one moment. We should be glorifying and romanticizing the process of figuring out how to build a life together, in all the myriad ways that happens. Proposals are fun, but really that’s what they are: fun. They’re not the big, important, life changing decision. That decision should be made carefully, with thought. It’s totally ok to focus on “childish” things sometimes, and to enjoy them. What’s concerning is when the childish things are treated as adult, mature decisions, rather than as concerningly thoughtless decisions. I’m sure there are people out there who do propose without discussing marriage at all ahead of time. That’s not fair to either partner or the long term health of the relationship.

When I first expressed frustration with this phrase, I responded by saying “I asked like the fucking adult that I am.” I realize that this is a gross simplification. I don’t think being asked is childish. But now I’m going to get into the ranting part of this post, because here’s what I DO think is childish and what I DO want to distinguish myself from when I say that I asked as an adult: the people who see “I said yes” as the single most important decision of their lives, the people who use these cute phrases and “romanticism” to hide the ways in which they allow their identities to be subsumed under that of a spouse, the people who not only let things in their relationship happen in gendered ways (this happens to everyone) but who actively embrace it as romantic and sweet.

What is childish and demeaning to oneself is the implication that the asking and answering of the question is the important moment in the relationship, this power dynamic, public, ritual laden moment, rather than the conversations that nearly every couple has before and after, usually on equal footing, about whether they want to get married, how they see their relationship progressing, what they want from marriage and from the relationship, their timelines. I seriously doubt that most people actually have a relationship in which the power dynamic is so broken that there is one party that gets to decide when changes happen and the other party simply has to accept or not.

So the uplifting of those antiquated dynamics in the cutesy phrase “I said yes” and the concurrent moment of disparate power and disparate roles is what pisses me off, and makes me want to distinguish myself from it as someone who is complex, who has opinions, who comes to my partner equally, who makes their own god damned decisions, who actively participates in the direction of their relationship. THAT is why I wanted to use the word adult. Because my relationship empowers me rather than infantilizes me, and that has nothing to do with who asked or who didn’t, it has to do with the fact that the moment of asking really wasn’t that important and probably shouldn’t be that important in any healthy relationship (except as something fun).

And here’s part of where I want to call myself out. I am getting too invested in the Big Public Expensive moments. Sure, I’m an event planner and a romantic, and so I find them fun. I like rituals, and I like parties. But those are excuses. I am buying in to the capitalistic Wedding Day is the Most Important Day bullshit, and while I think I’m doing better than many people, I’m still disgusted by how it turns me in to a person who doesn’t look complexly at their own life and needs, and doesn’t think deeply about the long life that I’ll have with my partner after these singular moments that Must Cost a Lot of Money. The wedding day is cool and all, but in terms of importance, it’s pretty low. The important moments are the times we support each other through shit, the ways we deal with fights, the kindness we show each other, and the ways we engage each other’s minds. I’m losing sight of my adult, empowered relationship and falling into the trap of “it’s pretty so it’s important.”

So I’m recommitting to the fact that I would like my wedding and engagement to reflect the partnership I have with my fiance, and who we are as people, as well as the tenor of our relationship. I can do better and I will do better.

For Niki

Today was a shit day.

For those outside of the atheosphere, you probably don’t know who Niki Massey is. You probably don’t know that she died today. You don’t know about her years long struggle with depression, anxiety, BPD, chronic pain, fatigue, and of course the fucking system designed to help people like her that had done jack squat for her until the day she died.

Niki was a writer. She wrote erotic fiction to make a living and she wrote inspiring, amazing, social justice pieces because it was who she was and what she cared about. She lived the kind of life that our media and our society like to pretend doesn’t exist; the life of a black, asexual, disabled woman. On top of all of that she was outspoken and took no shit. Because of who and what she was, I want to talk about her. I want to tell stories about her. I want to make damn sure that the world knows who she was, the systems that did this to her, and exactly how much she gave to the communities she was a part of. I want you all to know how strong she was, how smart she was, how loved she was.

So here is what I know about Niki. Here is who she was, at least the pieces of her that I knew. Here is a life that fucking mattered, and I will not let it disappear without being remembered.

Niki was life itself. This is why the idea of Niki not being alive is so impossible to fathom. She was vivacious. She had a hard time keeping her volume at the appropriate level, but that was part of the joy of Niki: she laughed loudly, she always had a comeback, she would never be silenced. Her blog, Seriously?! was all of that wrapped up in biting wit, acerbic commentary, and no fear about being misunderstood or misinterpreted: Niki simply told it like it was, and fuck you if you didn’t get it. She wasn’t flowery or fru fru, but hell if she had a way of creating metaphors and descriptions that were out of left field, hilarious, and surprisingly informative. In the last year or so, I’ve really had a hard time keeping up with any blogs. Niki’s was always the first one I would go back to check on. She was like a fucking fireball of common sense when the world was just shit weeds. She burned past it all.

Niki was giving. The first time I met her, I was struggling to understand my sexuality. She was the first real life asexual person I had met, and she welcomed me with open arms (not really, we’re both touchphobic BPD kids, that’s not how we roll. Fuck, we were. Were.). She talked to me about her journey, and how affirming asexuality was for her, and how her relationship worked. She was completely unafraid to be vulnerable. It was so refreshing, and helped me come to terms with who I was, with changing sexuality, with trying different things and realizing they weren’t for me. She helped a lot of people on that journey.

Despite her chronic pain, Niki still managed to do more volunteer work than most able-bodied, privileged fucks out there. She volunteered as a clinic escort at Planned Parenthood, volunteered her time as a speaker at multiple conferences (even when she was increeedibly nervous), and spent far more time than any one person really needed to wading through the shitpools of the internet to create blogs and responses that were POSITIVE.

At the first Con that I met Niki, some asshats decided to troll our Twitter feed and call themselves #braveheroes. Niki was one of the loudest voices laughing at the sheer ridiculosity of it. It instantly endeared her to me. But I’m going to be gross and honest. Niki was an ACTUAL FUCKING brave hero. Day after day after day she got up and worked through pain and talked about it. She was not afraid to let people know what was going on, to talk about the nitty gritty, intimate details of chronic illness and mental illness. She did everything right. Every fucking thing. When she felt suicidal, she went to the hospital. She asked for help. She worked for HOURS on her disability hearing to make sure that she had everything in order. She worked her ass off on her books to try to contribute and feel meaningful and useful. She was a god damn inspiration.

I love you Niki. So many people loved you. It hurts me so much that what you heard were the messages from society, telling you that your body, your skin color, your gender, your ability to work, those were what mattered. Not your brilliant mind, not your compassion, not your wit, not your kindness, not your hard hard work. Fuck that. You mattered. You mattered so much. And you still do.

Today I am remembering you up on stage, speaking passionately, wearing the skulls and purple outfits you loved so much, celebrating the fuck out of October, your favorite month.