Communities, Madness, and NeuroTales
I’ve been thinking about what NeuroTales can learn from those who came before us. Who were the Neurodivergent and Mad folk who came before us? Who were the Neurodivergent infants thrown into The Apothetae, left to die by ancient Spartans? Who were the Neurodivergent folk shoved into Idiot cages throughout medieval Europe? Who were Neurodivergent folk forcibly sterilized during the age of eugenics? Who are the countless forcibly incarcerated Mad inmates of psychiatric hospitals? Who are the Neurodivergent folk without insurance? Who are the Neurodivergent folk exploited in sheltered workshops?
Our culture's understanding of these lives comes from the very structures that cause them harm. Medical institutions, government agencies, and the legal system all play a part in shaping our understanding of (Dis)ability, while simultaneously fostering ableist and sanist ideologies. They paint Neurodivergent and Mad folk to be dangerous or incapable, peddling language like “Chemical Imbalance” and “Mental Illness” with little evidence to back them up. These phrases permeate our culture and become legitimized by the institutions our culture holds most sacred.
Our culture misplaces its faith in a biomedical model of (Dis)ability because we’ve built critical social structures upon it. Our laws wield it as a weapon. Our public funds are entangled with it as nurses, police, and social workers are all paid to “deal” with it. It’s propped up by an ever-growing pharmaceutical industry that has billions invested in it. Our structures are held together by ableism while simultaneously generating it. People who write stories about Neurodivergent and Mad folk that don’t examine these intricacies, who take these structures at their word, will inevitably regurgitate their ableist myths, mirroring and reinforcing stigmatizing narratives.
Our best understandings of these lives then come not from institutions of “experts”, but rather from the words of those who experienced them. We learned about the conditions of 19th-century asylums through inmates’ personal writings. Hersilie Rouy left us first-hand accounts of her time in asylums. Mary Huestis Pengilly wrote in a secret diary while still incarcerated. When Leonard Roy Frank and Wade Hudson held a public forum protesting against psychiatric violence, they knew the power of stories. They choose to present an original play at the forum to convey their stories to the public. We gain insight into the realities of forced sterilization and eugenic violence from hearing Carrie Buck’s own words in interviews. Countless Neurodivergent and Mad academics have recounted and dissected disabled folks’ experiences (Check out some further reading if you’re interested).
There is power in lived existence to shift cultural perspectives. While building NeuroTales, I’ve been reading about Mad studies and the formation of early Mad communities. Mad studies is a “field of scholarship, theory, and activism about the lived experiences, history, cultures, and politics about people who may identify as mad, mentally ill, psychiatric survivors, consumers, service users, patients, neurodiverse, and disabled”. Mad studies has illuminated a lot for me about the value of agency in storytelling.
By the mid 19th century Mad folk were boxed out of policies that regarded their livelihood. This was in large part due to a rising sentiment that “mental health” policy should be relegated solely to professionals. They developed a mystifying "professional" language as a gate-keeping measure. This left the average person out of the "mental health" discussion. The faith placed onto these professionals allowed their methods to go unchecked, which helped usher in the modern era of institutionalization. This in turn laid a groundwork that would let eugenics thrive in the early 20th century, the stigmatizing effects of which still reverberate today.
By the 1960s, many had grown disillusioned with the era of professionalism. Mad studies pioneer Mel Starkman notes “Credit unions, run by members, took control of money away from bankers. Tenants’ associations sprang up, as did organizations of people on public assistance, and of other groups persuaded that the “professionals” did not always know what was best. Vietnam protesters took war out of the hands of professional soldiers. Anti-nuclear protesters stated loudly that the scientists were not always right. And this philosophy affected the infant psychiatric inmates’ liberation movement; in fact, many of its founders came from these other groups.”
Out of this zeitgeist of anti-authority many survivors of psychiatric violence began to organize. They came to understand that their traumas were not just individualized experiences but a result of larger systematic violence. Grassroots movements began to spring up, serving as the foundation for what would become Mad activism.
The formation of these groups indicated a paradigm shift, one that moves away from service and towards community. It’s a lesson that NeuroTales takes to heart. A paradigm of service is infantilizing. Judi Chamberlin examined this in On Her Own, a foundational text for Mad studies. " The concept of a service implies the existence of two roles, the server and the served. No matter how much a group may attempt to break down such roles, some residue of them always remains when a group is delivering ‘services’”. These service-based relationships inevitably become colored by an imbalanced power dynamic. A paradigm of community on the other hand, as Chamberlin points out, implies interaction.
This interaction is critical for NeuroTales. If this group functions by learning from one another, then we must strive to create a structure that can welcome the voices of all involved. Madness is not one thing, and neither is Neurodivergence. Our individual experiences differ. If we embrace this, we can discover a more complete understanding of our collective culture. Early psychiatric survivors groups knew this. They knew that they had more power as a collective than as individuals. When isolated individuals came together to share their knowledge, it cultivated into a field of studies that advocates for and understands Madness in a deeper and more complex way than they could on their own.
The goal of NeuroTales is to lift the work of Neurodivergent and Mad writers and create a space where our stories can grow. The methods in which that goal will be realized will come from this principle of collective knowledge. By taking cues from Disabled collectives of the past, we can begin to build a group that will allow the individual talents of each member to shine. In doing so, we'll accomplish more than any one individual could.