Every week, I get at least a half-dozen requests from disability organizations to volunteer my time to them. They want me to come speak, write, design social media campaigns, join their boards, and provide expert advice on autistic community politics that could make or break outreach efforts. The organizations will tell me how much they value my work and how important it is to them. So, logically, I ask to be paid for it. Oftentimes, they are shocked and offended at the very idea.
The fact is, “value” isn’t a feeling or a metaphor. “Value” is a number. The things that disability organizations budget for are what they value. And if they don’t have paying disabled speakers, writers, and consultants in their budget, they do not actually value us. They do not value us, and we need to start valuing ourselves by not accepting “we don’t usually pay,” as an answer.
The economic reality of the disability community is stark. The vast majority of disabled adults are unemployed or underemployed. The autistic community experiences one of the highest rate of unemployment of any disability population, despite the fact that many of us have enormous, if somewhat unconventional, talents. By the lowest estimate, two thirds of autistic adults want to work but can’t jump through the social hoops of the job interview process. It took me over a year to find a job after I finished my graduate degree. And if, by chance, we do get hired, we often don’t last long on the job. For example, I was fired from my first job at a medical journal after a little over a week for being a “bad cultural fit.” To this day, I have no idea what that means or what I did wrong. It could mean than I was much weirder than I seemed on paper, and perhaps that didn’t fit the company culture. It could be that I said something socially inappropriate, and rather than talk to me about it, my manager decided firing me was easier. I’ll never know what happened for certain. At the time, I didn’t know I was disabled, so I didn’t know what resources were available. I’ve had time since to become a bit of an expert on employment and disability issues.
Disability employment is an increasingly hot topic. It is one of the topics I am asked to speak and write most about. And the greatest irony of all is, I have had to fight every single employment summit and conference I’ve spoken at for compensation. Most come around, after I point out the absurdity of promoting autism employment while asking an autistic person to work for free. Others don’t. In fact, many feel that by asking me to work for free, they are actually doing me a great service. They are providing me with “exposure.” I’m a writer. We have a saying in the writing world: People die of exposure. I can’t eat or pay rent with exposure. The idea that disabled people’s time and work aren’t truly valuable is pervasive. It isn’t limited to the autism-sphere, where I do most of my work. And it must stop.
In many ways, disability organizations see us as interchangeable. There are so many disabled speakers, and the bar to entry is low. I have seen program after program for events where, instead of a specific person’s name is listed, there are simply the words, “self-advocate.” If I refuse to be “self-advocate” in a program, I am seen as easily replaceable. Service providers and people from service provision backgrounds in the nonprofit sector call us “individuals” but don’t treat us like we actually are. There’s always the threat that the organization that asked me to speak can just get another disabled person who doesn’t know any better and has not yet learned how to advocate for his, her, or themselves. The quality of the “self-advocate” is irrelevant, because whatever we say isn’t significant. If it was, we would have our names, accomplishments, and credentials published in the program. We’re essentially inclusion props.
Disability organizations need to do better. They need to see our expertise. Recently, I was offered minimum wage, 10 hours a week, to be someone’s assistant at a national autism nonprofit. I have five year’s work experience in the nonprofit sphere and a Master’s degree. I’ve published in multiple major national and international news outlets. I founded my own startup. When I pointed out the offer was insulting given my experience level, I was told “we all need to start somewhere.” Obviously, I declined. At this point in my career, I know what I’m worth. And if your organization wants to say you value disabled people and our work, pay us like you actually mean it.