It’s time to talk about why no one pays Autistic advocates

Three years ago I was finally clinically recognized as being Autistic. I say finally because I was almost 40 years old and had suspected I was on the spectrum for over 20 years. My entire adult life I had “failed out” of society for reasons I could not then explain. I jumped around from one low-paying job and abusive workplace to another and I could tolerate none for long. I had no references, wealth, and a very crummy, abusive safety net. (Most of which is still true).

I decided that my secondary teacher education and English degree would be sufficient along with my intensive study and life experience in making me an excellent autism educator and speaker. This was true. What I didn’t expect is that although people like me are increasingly in demand at conferences, symposiums, and colleges, the market price for our expertise is exactly zero dollars. 

We are never (I’ve checked on it) offered money unless we have gained national attention and that attention usually comes at the behest of those trying to use us as inspiration porn. No Autistic person gets paid unless they are privileged enough to have neurotypical agents or advocates who support them by negotiating for us or giving us funding for mass-market publication and promotion. Unfortunately, this has led to mostly white, verbal, straight, cis, and/or well-supported Autistics gaining visibility while more intersectional voices are completely buried. We hardly ever hear from Trans Autists, Black Autists, multiply-disabled Autists, Autists with criminal records, homeless/impoverished Autists, or Autistic people with many difficult intersections and identities.

And those are the voices which are the most compelling and insightful about exactly what needs to change to help all Autistic people.

This exploitative norm is reinforced with bad-faith arguments like, “But the other guests are speaking for free.” Most other speakers at autism conferences and institutions of higher learning are professionals who use these events to promote themselves, their practices, and their publications/paying work. They are getting advertising out of it at least, although they are still more likely to be offered compensation in money. Autistic advocates often have no other gainful work and public speaking is especially stressful for us. We spend more time in preparation and face a greater risk of not being taken seriously by parents, students, and mental health professionals who attend. We are asked difficult and often triggering questions that we are nonetheless more qualified to answer than non-Autistic “autism experts.”

Another argument is, “But there’s not enough money for us to do that.” Lemme tell you a true story: For several years, venerated and well-endowed Emory University in Atlanta has had a class on autism. Most of the semester, students learn about autism from very outdated and debunked material put out by neurotypical sources and taught by a neurotypical professor. For two of those years that I know of, local Autistic advocates (who are acquaintances of mine) have been asked to come spend a morning educating the class about autism from an Autistic perspective. Neither were offered any compensation even though one advocate was unemployed and going through a terrible divorce and could barely afford housing. (He passed away soon after he educated students there for free).

I talked to both friends about requesting at least a small honorarium for their life experience, trouble, time, and expertise. One was too afraid of losing the gig to ask, and the other was so blown away by even being asked to do this that he didn’t feel right asking for his time and work to be respected. I’m pretty sure Emory could scare up fifty or more dollars to make it worth their efforts.

There is no subsidized/endowed organization that can’t spare some scratch for us if they actually care about minority voices.

Here’s what happens when we do ask for money: We are simply passed over, many times in favor of less intersectional Autists with better supports and less of a sense of what they are worth. Easier to exploit in other words. I’ve been seated on autism conference planning committees where proposals by Autistic speakers who request any amount of money are thrown on the “No FUCKING Way” pile automatically. It was terribly dehumanizing to witness and it showed me what neurotypical professionals really think of us.

“But is this really something as bad as exploitation?” you might ask. Imagine if you will a convention about the Trans Experience in America. You are a Trans activist/advocate/scholar who wants to share what they know. You get to the conference and discover every attendee and speaker is Cis and are considered bigger experts because they have studied the Trans Experience in books which had no input from Trans people at all. You discover that the Cis “expert” speakers are getting some sort of compensation, even if it’s just advertising, but no members of the population being discussed are compensated in any way and neither are you even though your minority status makes employment much more difficult. You yourself have no other source of income.

Is THAT exploitation? I don’t think any LGBTQ allies out there would disagree that it is. In fact, I think they’d be furious and call out that organization in the strongest ways possible. Now imagine if it was a conference on the Black Experience in America and the same situation happened? The organization would lose all funding over it at the very least.

However, I have experienced this exact scenario multiple times and the neurotypical organizers act offended if it’s brought to their attention. There is “abled fragility” in abundance. I have realized too late that I was set up to look like a self-narrating zoo exhibit for no pay even though I was ill with anxiety.

This a common problem in nearly all advocacy, but especially disability advocacy.  It is assumed that if we are alive and appear to function that we have adequate employment and support when mostly we do not. It is assumed that somehow the mere exposure will lead to better things for us. This is rarely, if ever, true because exposure doesn’t matter if absolutely everyone thinks they can get away with not paying people like yourself.

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And everyone does get away with it. Here is why:

  • Autistic people are conditioned to feel they are unworthy, inadequate, and burdensome. This makes any kind of superficial recognition or respect seem weightier to us than it actually is. We are expected to be grateful for even being asked what our lives are like. In other words, we are expected to do unpaid work for being treated with the same kind of consideration that regular people automatically receive for their specialized knowledge.
  • We are considered to be “less expert” on our lived experiences and personal education than those who have not lived it. There is an assumption that we are unreliable witnesses to our own lives because we are mentally/socially inferior.
  • We have less ability to effectively negotiate and assert ourselves and our needs because we were never taught how to and have a different set of social aptitudes (like hyper-empathy). We were either too sheltered or too neglected to be taught these important self-advoacy and promotion skills.
  • Organizations use our positive Autistic traits against us; namely, our extreme passion to “get our message out” and make things better for others like ourselves regardless of our own sacrifices and our discomfort for discussing crass subjects like money. We are selfless and it is weaponized against us.
  • Other people don’t see an issue because we are considered to be medically sick people rather than a culturally oppressed minority (which was also the problem for Trans/Queer people at one time).

At the end of the day, we are considered easy to dupe because we are “inferior” or even subhuman but there are big benefits to organizations for “including” us despite doing so in deeply offensive, tokenizing ways. Many shifts in how we view the labor of oppressed minorities, and especially developmentally disabled people, are going to need to occur before we are valued enough to get paid for our true worth. Unfortunately the best way to accomplish this shift is by giving Autistic advocates, particularly intersectional ones, much more platform and letting us speak at as many events as possible. But the best way to get a good speaker to stop their advocacy is to continually deny any payment – we cannot sustain the work without it.

So, baby steps to humanhood and financial stability I suppose?

How the term “self-advocacy” is misused to stop the progress of autistic people

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After I was diagnosed at 40 as autistic, I wondered what the next steps for saving my life would be. I asked my psych evaluator and allistic-led sources in my area what I should do, and the answer invariably was “keep self-advocating.” I looked into what “self-advocating” meant and  here’s what I found:

“Self-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own lives, including being in charge of their own care in the medical system. The self-advocacy movement is (in basic terms) about people with disabilities speaking up for themselves. It means that although a person with a disability may call upon the support of others, the individual is entitled to be in control of their own resources and how they are directed. It is about having the right to make life decisions without undue influence or control by others.” – poorly cited Wikipedia entry

“n. the practice of having mentally disabled people speak for themselves and control their own affairs, rather than having non-disabled people automatically assume responsibility for them” – Collins Dictionary online

Well that sounds delightful and empowering!!!

Those of us trying to form a larger movement by and for autistics are still incorrectly called “self-advocates”

But that’s not what the professionals telling me to “self-advocate” meant. It didn’t mean that I was to have more control over what drugs I was prescribed, how I was addressed by professionals, that I was to be led to appropriate resources and helped to access them, or that I would be able to “call upon the support of others.”

They used the term “self-advocacy” to mean the opposite of that. I would speak with a mental health provider and ask for help with accessing programs, starting programs that would help my community at large, support to fight the over-pathologization of my condition by local medical professionals who wouldn’t listen to me self-advocate, a therapist who was autism-informed (for adult women no less), or even training for how to self-advocate, and the answer was always, “We can’t help you with that. Those things don’t exist here. Keep self-advocating.”

It took me a few years to find the right people and programs.

I thought reaching out to professionals was, first of all, what they wanted us to do because we are not considered experts on our own inner experience. I also thought looking for ways to help yourself by accessing available resources was self-advocating.

They were in effect telling me to “bootstrap” my way out of systemic oppression with no help from the autism-industrial complex. Doctors DO NOT generally listen to the opinions and treatment plans, no matter how well-informed, of non-conforming, invisibly disabled women. This is clear by the number of posts in autism groups which relate how abysmally difficult this is because of bald-faced intersectional discrimination. I needed someone, anyone, to go to the doctor with me to a. be a witness to my ill-treatment, and b. back my ass up in there! As a cognitively disabled woman, I do not possess the necessary credibility. But I was being told, “Go up against this powerful man and impenetrable institution alone.”

Find us the money, train us to empower ourselves, help us get the backing we need to create support systems according to what we say we need. 

Autism centers in America DO NOT generally have many resources for autistic adults including classes for self-advocacy training. Even though autistics are giving one another tips and tricks online, we still run up against the wall of our own poverty and discrimination. The problem isn’t that we aren’t self-advocating or trying to; it’s that people refuse to give up the power they have over us. We have no leverage.

It’s interesting to note that other culturally marginalized groups are not asked to self-advocate, because they are seen as being oppressed rather than intrinsically broken. As the black community has pointed out, they simply don’t have enough resources to self-advocate under the level of repression they experience. Neither do we, no matter how good we are at being the squeaky wheel and insisting upon ourselves. No matter how much we research our condition and the medications we are given. No matter how self-aware we are.

Implying that advocates are only looking to help themselves personally plays into the dangerous false narrative that autistics are self-absorbed and have no empathy or broader social awareness.

We need people outside our community to care enough to reach down and help lift us up, and share their superior coffers and connections and reputations, because we are often literally unable to speak for ourselves and not heard when we do. For instance, black people need direct action from white people to reach their civil rights goals, without whites taking over the narrative and stealing the funds.

Autistic people need exactly the same thing from allistic people. Stop putting all the onus for change back on the most powerless. Find us the money, train us to empower ourselves, help us get the backing we need to create support systems according to what we say we need. 

The truth is this: self-advocacy is primarily a term used to put down the efforts of #actuallyautistics advocating for all of us. Those of us trying to form a larger movement by and for autistics are still incorrectly called “self-advocates.” In fact, most of us can advocate for others better than we advocate for ourselves. This framing gives disability organizations permission to not properly compensate autistic activists for the unpaid labor we do to give our community a centralized voice and civil rights. Our huge hearts, passion, and sense of existential urgency is leveraged against us and we burn out with little to no support.

Implying that advocates are only looking to help themselves personally plays into the dangerous false narrative that autistics are self-absorbed and have no empathy or broader social awareness. The saddest truth in all this is that the autism industry does not want us reaching our own internal consensus on the issues, joining together, and advocating for systemic change. It would really mess up their bottom line if we became self-determining, a true community. We would have a united front for ending ABA, gaining financial power, building cultural credibility, and eventually not needing them once we have autistic professionals, researchers, and representation in place.

Enjoy this fun video!