Nothing About Us, Without Us

I recently encountered a publication about Autism and neurodivergence that looked interesting at first glance.

At second glance and after conversation with a collective of neurodivergent folx, we realized the book contained ableist content, problematic language, and was essentially a non-autistic person profiting off the lived experiences of autistic people.

In my fury, I decided maybe a productive way to channel my anger is to write a guide for people on how to vet the resources they encounter in an attempt to curb the problem.

Bonus: you can use this guide to vet any resource about any historically excluded identity, not just neurodivergent people.

"Nothing about us, without us."

While the exact origins of this phrase is up for debate (some trace it all the way back to the Roman Empire and the call by the people for representation) it became an echoing battle cry as the disability movement gained traction in the 1990's.

These five words speak volumes to the history of excluded identities being silenced, spoken over, and made subjects of brutal experimentation without consideration for basic human rights.

So whether you are seeking guidance on disability justice, anti-racism, neurodivergence, deaf experience, transgender best practices, etc. please consider these recommendations:

1 - Your primary investment should be made directly to people with lived-experience. Too many people of priviledge profit off the stories and lives of oppressed identities.

Example: If you are planning a Disability Summit, your speakers, panelists, presenters, and consultants should all be people with lived-experience being disabled. And your event must absolutely budget for paying all of them equitably (this means as much as or more than what a white, able-bodied, man is paid to speak, present, consult).

2 - Ask questions about the author, the event speaker, the panelists, the board of directors, the executive director, the staff, the paid contributors to a given body of work. (Asking these questions also alerts organizers that people want to hear from people with lived-experience, not outside observers).

Example: If you see a training about "cultural competencies" regarding Indigenous spiritual practices ask the organizers who the presenters are and if they are actually Indigenous people who are being paid for their time, expertise, and presence--don't just assume they are.

3 - Be curious about who is funding and sponsoring events, summits, and research--who is profiting? Are the stakeholders people with that identity or outside of that identity?

Example: If you come across an Autism Conference look into who the event is for, who the sponsors are, and who the presenters actually represent. If the main stakeholders are behavioral compliance and pharmacutical companies, you are looking at an ableist and problematic event.

4 - When there are people of lived-experience speaking, publishing, training, presenting, are they being equitably paid or are they expected to provide labor for free?

Example: You find an event celebrating cultures of the AAPI and notice there will be live music, performance, and arts--ask the organizers if they are paying the artists. All too often event planners assume that "exposure" is fair and equitable compensation for an artist's time, talent, and brilliance. It's not.

5 - If you are in a position to make decisions about speakers, presenters, trainers, panelists, researchers, authors, etc. intentionally budget for generous compensation and use your platform to amplify excluded identities by seeking them out and giving them the floor.

Example: You are a cis-gender man tasked with organizing a community resource group on gender. You use your position to invest in a transgender or gender expansive consultant to lead the task-force; you invest budget in paying members who represent diverse genders; your role is to listen, learn and provide support; not to lead this group.

6 - Place people with lived-experience at the HEAD of the table to lead the discussion, to shape the strategy, and to direct the implementation.

Example: You're part of a city council having a conversation about a certain section of the city that is struggling. Other council members, who do not live in that area, are making plans for that community. You speak up and petition for the council to bring on a person who has been a leader and resident in that community for decades as a paid Chair and provide them with a budget to hire additonal members of that community to run this task-force.

7 - When you find a person or resource that looks promising, dig a little deeper to make sure that their ideology is not rooted in systemic oppression, but in liberation.

Example: Just because a person appears to represent a certain identity, does not mean they actually do in practice. Surpreme Court Justice Clarence Thomas is a Black man who makes decisions rooted in systemic oppression and internalized racism. Supreme Court Justice Amy Coney Barrett is a white woman who makes decisions rooted in patriarchy and internalized misogyny.

8 - Use artwork done by an artist from the identity that is being represented AND credit and pay them for the use of their work.

Example: You are creating the graphics for an event for Women's History Month and remember some prints you saw by a queer, femme, Muslim artist you follow that would be perfect. You reach out to them and ask about the fees for licensing their artwork on your promotional materials. They quote their rates, you use your budget to pay them and credit their work on all your designs.

These are just tiny snippets of what it means to live inclusively, to lead inclusively, to transform culture inclusively.

What are some other ways you proactively seek out and support those with lived-experience?

Interested in collaborating or partnering in neuroinclusive work? Let's connect!