I was in a car, on my way to a work retreat for my new job at The Mighty, a popular mental health and disability blog site. The driver, a woman from Fresno who blogs about her life with a vascular birthmark, explained that she didn’t care for driving in Los Angeles. She turned to another woman who sat in the passenger seat, a blogger who focuses on disability issues from the perspective of a Christian and a parent of disabled children. After talk of traffic was over, they resumed their conversation about the famous bloggers who had reached out to them.
I tried to block the sound of their voices from my mind so that I could be fully engaged with the person sitting next to me. I sat in the backseat and was enjoying a nice conversation with another new co-worker who had flown from her home in New Orleans to participate in today’s activities. I’d perked up when she’d told me where she was from. Our conversation had taken off when I explained that I loved the city and that my family has some Creole ancestry.
It was a beautiful California day, and I was looking forward to the work retreat at The Mighty. The driver maneuvered though Hollywood until she found parking in a cement garage. My new friend from New Orleans got into her wheelchair, and we all ascended a ramp that ended at a glass door. I could already hear loud music, so I pushed my earplugs deeper into my ear canals. When the door opened I was blasted by the sound. I grabbed my Peltor muffs from the strap of my purse and placed them on my head. The confusion and disorientation I experience in response to exposure to loud or prolonged sound descended. I realized I was chanting, “I’m in hell. I’m in hell. I’m in hell.”
My new coworkers seemed to avoid my gaze. We navigated through hallways and corridors, and the music persisted in its relentless assault. When we entered the vast room in which the retreat was to be held, the CEO’s wife noted my earmuffs and steered me aside.
“I’m sorry about the music. We’re trying to get it turned off. You can stay over here in this quieter area,” she offered. Her look of concern seemed sincere, but I wondered how expecting me to withstand such an auditory onslaught was acceptable when it would not have been likewise okay to ask my wheelchair-using co-worker to attend the conference by ascending a flight of stairs.
The apprehensions I’d initially had about joining the team returned to my mind. I’d allowed my originally cautious disposition to be overtaken by optimism when I had accepted a position of contributing editor with The Mighty, but my hopes were about to be dashed.
My caution about working with the company was twofold. First, I’m autistic, and The Mighty remains partnered with Autism Speaks, an organization that was at the forefront of promoting parent-centered propaganda about the perceived horrors associated with autism and autistic people. Autism Speaks persisted in this spirit until its board of directors voted to change its mission statement in September of 2016. But I believe in the possibility of both personal and organizational transformation, so I pushed that concern to the back of my mind.
The second reason for my prudence rested in the ways the notion of mental illness is most often discussed on The Mighty. Hundreds of contributors to the mental illness section of the site embrace and support psychiatric drug use. I tried to look beyond that as well, especially when the editor-in-chief informed me that people were welcome to present anti-psychiatry perspectives too, as long as they were worded in a constructive manner.
Since I had agreed to edit the contributions to the chronic illness portion of the site, I thought I would be able to keep my personal views on the autism and mental health components of the site at arms length. I thought I could promote empathy and understanding for people living with chronic illnesses by promoting their stories, yet remain disengaged from the problematic elements present in the autism and mental illness categories.
I remained in the quieter area until I was told the music had been extinguished. Within minutes of walking from the quiet area into the main conference room, I realized how misplaced my optimism had been. I removed my Peltor muffs and earplugs as the newly hired Chief Revenue Officer launched into her presentation.
“If the CEO for Abilify was in the front row right now, he’d be salivating,” she declared. She had just explained her strategic plan for monetizing the site with pharmaceutical advertising. But the plan didn’t end there. The Mighty planned to give drug companies user data that would help focus the pharmaceutical manufacturer’s marketing efforts.
After I heard this, I stood and left the room again. I had some soul searching to do.
The staff at The Mighty are not greedy ogres at the exclusive beck and call of big pharma. They are real human beings who care deeply about changing perceptions about disability via the sharing of stories written primarily by disabled people and their families. They seek to promote ideas of inclusion and acceptance in the face of pervasive ‘othering’ and discrimination.
The Mighty staff wants to grow a platform that helps people find comfort in the perspectives of those who came before them, at times when they find themselves on the receiving end of a life-changing diagnosis or in the throes of undiagnosed illness. The folks at The Mighty are legitimately good people who want to change the conversation about disability. They hope to make the world a better place for those of us who are roadblocked by larger society because of our differences. They want to monetize the operation in large part so that they can be in a position to pay contributors, who they readily acknowledge are the site’s raison d’être.
But despite the merits of The Mighty staff, my caution transformed to distrust when plans for an alliance with pharmaceutical makers was revealed as a core component of creating revenue.
As soon as I returned home I submitted my resignation:
It is with a feeling of deep disappointment that I offer my resignation. I will be very direct as to why.
I was horrified to learn at the retreat that the company plans to monetize the site by pairing with pharmaceutical companies. Had I known in advance that was the chosen strategy to create revenue, I would have declined the position initially, rather than accept the resources you invested in me.
Let me offer a brief synopsis of my personal journey through healthcare. After reading it, I think you will better understand my stance:
In 2014, after I had been a patient of the mental health and psychiatric treatment communities for over 20 years, I suffered an iatrogenic brain injury. According to a neurologist, the injury was made possible by years of exposure to various psychiatric drugs, but specifically because of years of exposure to Abilify. Immediately following the injury, I lost my ability to read, write, and speak. I presented in the emergency room with symptoms similar to those seen in stroke patients. It has taken the intervening years for me to even partially recover these skills. I still cannot write legibly, I must type in order to make my written communication understood. And as you all saw at the retreat, I can still lose my speech if I am exposed to too much sound, in terms of both volume and duration. I did not experience that type of inability to speak prior to my injury. My previous autism-related challenges with spoken language had been of an entirely different character.
The injury damaged my already compromised auditory system as well. I’ve lived with Auditory Processing Disorder (APD) for my entire life, but it too went unrecognized by the mental health community, despite the fact that my inability to hear in environments with background noise was an enormous factor in many of the life stresses I sought help for. Rather than listen to my reports of these difficulties and try to uncover an underlying cause, psychiatrists threw drugs at me. My audiologist, the renowned Dr. Jack Katz, documented that my APD was profoundly exacerbated by the treatment modalities I underwent on the orders of psychiatrists.
Over the lengthy course of all of my interactions with the mental health community, my autism, like my APD, remained overlooked, and was instead characterized as bipolar disorder, borderline personality disorder, major depressive disorder, general anxiety disorder, or PTSD — it seemed like half of the DSM was thrown at me. But partly because I’m outside of the stereotypical autism demographic — white and male — my autism remained unrecognized until after my brain injury exacerbated the most problematic aspects of the condition, such as my hyperacusis, misophonia, auditory processing disorder, and dysgraphia.
After undergoing genetic testing, I learned in 2015 I have a CYP2d6 gene mutation that makes me a slow metabolizer of many medications, particularly certain categories of psych medications. A person who metabolizes a drug slowly cannot tolerate the same dosages as normal metabolizers, and is more prone to side effects. I had complained of these side effects to the mental health community for years, but my complaints were dismissed as symptoms of my ‘mental illness’. I also have a yet undiagnosed autoimmune condition that permits the allergic-type reactions I have to drugs and other things my body perceives as toxic to detrimentally affect my brain. I am trying to work with neuroimmunologists to understand the mechanisms behind these events.
Since I stopped taking all psychiatric mediations, my mood is phenomenal, despite the obstacles to tasks of daily living and problems with executive function I experience as a result of both my injury and my autism. I credit my meditation practice, the wisdom gained from my journey through the mental health system, and the hysterectomy I had to cure my premenstrual dysphoric disorder (a condition that I have observed seems to be common among autistic women), for my significantly improved mood.
I am currently on Social Security Disability, but I have never stopped trying to re-enter the workforce. I hoped this was my chance.
When I joined The Mighty, I thought I would be able to compartmentalize my views on psychiatry from the way mental health is discussed on the site. I have intentionally abstained from participating in any conversation on the topic, because I realize my perspective is at odds with the majority of the mental health perspectives presented in the forum. I thought I could peacefully co-exist with the difference of opinion. But I have to draw the line with being associated with a site that plans to actively promote psychiatric drugs and allow for data mining among registered users to this end.
I believed in my heart that I could play an important role in promoting the writings of people who live with chronic illness. I hoped I could help expand empathy and understanding. So it is with great sadness that I depart from that role. I’m not only a member of the chronic illness community because of my autoimmune and genetically mediated intolerance to drugs and other substances, I’m a member of the autistic community as well. The autistic community has been on the wrong side of medicalization and medication for far too long. I cannot in good conscience lend my voice or my skills to a platform that associates with drug companies that have caused so much destruction to a community I care very deeply about.
CEO Mike Porath graciously responded to my resignation.
Twilah, I’m sorry to hear this, and I’m sorry that the day of the retreat was a challenging one for you too, but I appreciate you giving us the context of your personal experiences in explaining your decision.
I don’t know if and how we can be helpful to you down the road, but please don’t hesitate to reach out if we can be. I’m sorry this didn’t work out, but I respect your decision and I speak for all of us when I say we truly wish you the best.
I also wish The Mighty the best. It is my deepest hope that they can help people, but it is my greatest fear that they will open doors to more psychiatric injuries.
Clarification: Dr. Katz documented that my APD was exacerbated by ECT treatments. I apologize that my original writing did not make this clear.
This post was originally published at madinamerica.com