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In the past week the world has been stunned by unsubstantiated medical advice coming from non-professional leaders, and the excuses made to defend this behavior.
Whilst many have reacted with incredulity and even amusement at comments, other have been concerned about the number of people out there that may take remarks seriously and do something dangerous. For example, the Autistic community knows better than most the very real danger of people using bleach as medicine. MMS therapy, a product that contains bleach, has been sold for years to misguided parents around the world as a ‘cure’ for Autism so it is a very real concern that deeply irresponsible remarks may cause an uptick in this abhorrent practice.
While our news outlets appear besieged with opinion givers and factoids, professors paired with lay people for “balance,” we are starting to realize the dangers of ignoring science and belittling expertise. Today I wanted to write about the importance of centering experts and moving away from quackery, an issue that is particularly pertinent in the neurodiversity and disability field, where there seems to be no end of opinion from people acting outside their boundaries and against the tide of ethical good practice.
New Power vs Old Power
How did we get here?
“Old power” is the academic ivory tower, the ruling classes, held by a few and closely guarded. For millennia, old power has controlled knowledge, politics, education, religion and while we move in and out of aristocracy and meritocracy, old power is for the few, not the many.
“New power” is a dynamic, emergent movement of popular forces affecting mainstream institutions. New power has historically been trade unions, it has been labor movements, civil rights movements.
In recent years, the democratization of information made possible by the internet has unleashed millions of disenfranchised people, placed knowledge at our fingertips and enabled informed debate of issues affecting our health and our politics. This has broken the historical separation between old and new power. In the new landscape, experts have been derided as out of touch and new power has become undermined by armchair experts and google doctors. It has been seen by some as the break down of old power structures, young versus old, privilege versus exclusion. However, this a false struggle. Co-production and collaboration work best, practising within the boundaries of our competence and experience.
In my field as an organizational psychologist specialising in neurodiversity, it is incredibly important that I listen to the voices and experiences of people with neurominority conditions rather than simply drawing all of my knowledge from other psychologists or my own anecdotal experience as a woman with ADHD. “Nothing about us without us,” a seminal work on disability oppression, noted the critical need for end user participation in service design.
A great example of utilizing the expertise of stakeholders comes from Addiction and Mental Health programs. Recovering service users are recruited to work within the organisation as they have unique insight and experience, becoming mentors and providing inspiration. These programs work brilliantly as part of a multi-disciplinary team, with support and supervision from mental health nurses, social workers and psychologists.
In this model, we don’t ignore expertise, and we don’t devalue the voice of experience. Expertise brings breadth, a safety net, quality assurance and bench marking. Experience brings depth, authenticity and connection.
So in new and emerging fields, how can we know who to listen to? Here’s my helpful checklist to sort the professional service from the quacks.
(1) Promoting “magical thinking.” Suggesting that a service or intervention will transform everything or solve all problems. Beware of being promised the earth, particularly if the ‘evidence’ of success is based on a few unverifiable anecdotes.
(2) Practising outside competence. Professionals refer to other specialists when they meet a problem that is not in their remit, or seek supervision. People who move industries need to retrain and recertify before being treated as an expert in their new area of interest. You wouldn’t expect to be treated for cancer by an orthopedic surgeon, or counselled by a lawyer, this follows for HR, psychology, coaching and business services too.
(3) Using unqualified titles like “Expert,” “Specialist” or even “Psychologist,” or without being part of a formal community of supervision within which they have access to guidance and advice from qualified colleagues.
(4) Opinion-based publications without peer review. The process of peer review means that work is less likely to slip through the net that has not been substantiated, or is ethically questionable. Professionals are careful about what they publish, they recognize the impact a careless comparison, or pontification on a topic they have not researched, can wreak if taken too seriously by a lay person. With power comes responsibility, and when professionals get it wrong there is a network of oversight to complain to, where dangerous information can be corrected in the public domain.
(5) Absence of lived experience. Professional services in neurodiversity and disability build user experience into the heart of their provision, participatory delivery and a wide range of conditions contributing to ideas and design.
As someone who started studying psychology to change it, because I felt “experts” were distant, dismissive and oppressive, I can sympathize with people who feel annoyed by my profession. However, those who allude to psychology without being part of the regulatory framework are at risk of giving unsubstantiated advice without insurance for recipients. Psychology has come a long way in the past 20 years. We are better at listening to stakeholders, better at co-production and more humble about our abilities. We are not perfect, but we have a code of conduct, a set of guiding principles and rigorous supervision and safe-guarding frameworks in place.