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 writer. 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, NT-passing, “no-ID,” and/or well-supported Autistics gaining visibility while more intersectional voices are completely buried. We hardly ever see BIPOC Autists, Non-speaking Autists, multiply-disabled Autists, Autists with criminal records, homeless/impoverished Autists, or Autistic people with many intersections and difficult 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 doing it for free.” Most other presenters 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 wrote 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 included 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. I’ve been seated on autism conference planning committees where proposals by Autistic presenters 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.
However, I have experienced this exact scenario multiple times in the context of Autism 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 and I spent many hours preparing the material.
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.
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).
- For those of us with more externalized Autistic traits (dyspraxia, Non-speaking, low-masking) being taken seriously is far more difficult, including within the advocacy community itself.
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 according to what we deserve to earn. Unfortunately the best way to accomplish this shift is by giving Autistic advocates, particularly intersectional ones, much more platform and letting us communicate at as many events as possible. But the best way to get a good advocate 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?