Addressing the common practice of mining neurominority insights, advice and lived experiences without compensation for corporate gain

In her recent talk at the Stanford Neurodiversity Summit, Judy Singer raised an issue that I have been grappling with; the common practice of mining neurominority insights, advice and lived experiences without compensation for corporate gain. Many well-funded companies and organisations commoditize our services and use our involvement to lend legitimacy and credibility to their inclusion and diversity initiatives, yet fail to offer us any compensation for our contributions.

I receive at least 10 requests a week to give talks, presentations and seminars on how to help companies and organisations become more inclusive. With the exception of offering to pay for my travel costs, not one has offered to compensate me for the substantial time and effort involved in preparing an hour long PowerPoint presentation. While I am happy to donate my time and expertise to support fledgling NGOs, charities, parent and student groups, state schools and other similar organisations, I am often asked to speak at large events in which the organiser is charging attendees substantial fees. Although I receive no compensation, I strongly suspect that this is not the case for the neurotypical speakers that are also part of the event. 

Now that I am an author, have launched a global neurodiversity initiative and have won many national and international awards for my advocacy, I believe that my involvement adds credibility and legitimacy to disability-related events that are keen to be seen as diverse and inclusive. What is troubling is that well-funded companies that are benefiting (and perhaps even profiting) from these events, expect me to donate my time and expertise for free. Benefitting from mining the insights, advice and life experiences of a minority, marginalised group for free is exploitive. The fact that it is happening in the context of inclusion and diversity initiatives presents a dichotomy and hypocrisy I struggle with. Although it is important for neurominorities to be invited to the table and have their voices heard, it is just as important that we are not treated as second class citizens who are undeserving of equal treatment. 

If companies genuinely want to become more inclusive and diverse, they need to stop taking advantage of disabled people, and begin to treat us with the respect and dignity that we deserve.