This month, we are featuring the work of Jorn Bettin, a neurodivergent anthropologist by birth and a knowledge archaeologist by autodidactic training. He has a background in mathematics, and has put his understanding of formal symbolic reasoning to good use in the co-design of ecosystems of visual domain specific languages, working closely with domain experts from a broad range of industries in transdisciplinary contexts. Jorn has been involved in operating S23M since 2002. His current work focuses on the co-design of new community-oriented and patient centric models of care, including supporting software tools. Jorn has co-authored a number of books on creative collaboration and model driven product line engineering, and he a trustee of the Autistic Collaboration Trust – a global mutual support hub for neurodivergent individuals and ventures.

You can connect with Jorn Bettin directly at: https://jornbettin.com

If you are a DJN member doing interesting work, and would like to be featured in a future newsletter or blog post, please email us at designjusticenetwork@gmail.com.

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A variant of this article was originally published by the Autistic Collaboration Trust: https://autcollab.org/2021/02/01/making-the-world-a-safer-place-for-everyone/

Image Description: Two icon heads facing each other. Both heads have gears inside them suggesting ‘working gears’ or ‘gears in motion’ inside the brain. Beneath the icons is written autcollab.org.

Making the world a safer place for everyone

Neurodivergence is at the core of creativity. Not wanting to be popular is what allows autistic and artistic people to act as agents of a healthy cultural immune system within human societies. Autism and other forms of neurodivergence are genetically-based human neurological variants that can not be understood without the social model of disability.

In the broadest sense, the social model of disability is about nothing more complicated than a clear focus on the economic, environmental and cultural barriers encountered by people who are viewed by others as having some form of impairment – whether physical, sensory or intellectual. – (Mike Oliver 2004).

Undercover autists as well as all other weird non-conformists are compromising their mental and physical health in toxic school and work environments on a daily basis. In W.E.I.R.D. societies management by fear is the norm in most organisations, and groupthink is celebrated as a virtue.

The vast majority of adult autists have no formal diagnosis, and in sick W.E.I.R.D. societies they can’t afford to be open about their neurology. The autism industrial complex insists that only those who have fallen off the cliff, whose mental or physical health has been severely affected by isolation, discrimination, and bullying, are eligible for a “diagnosis” of autism.

Our society has been constructed such that the only assistance available to autistic adults consists of an ambulance at the bottom of the cliff. If the severely injured autist is still alive, the assistance available addresses the acute symptoms of distress, without any thought being given to the toxic social environment that led to the acute crisis. A disproportionate numbers of autists take their lives before receiving a “diagnosis”. This points to a violation of human rights, to institutionalised discrimination and bullying in our society, and not just to a lack of adequate crisis support services and healthcare services.

The list of negative stereotypes incorrectly associated with autistic people is not getting any shorter. So-called “Autism at Work” programmes for example are predominantly focused on specific industries and professions that reinforce the stereotype of the autistic engineer and the stereotype of the autistic savant. This contributes to the creation of corporate ‘ghettos’ of officially diagnosed autists, who are confined to working in specific roles – often for very small salaries, who must at all times be appropriately “managed”. Autistic people are prevented from interfering with the bigger social picture, which “autists can’t possibly understand” – by virtue of the pathologising language that is imposed by the autism industrial complex, which in larger countries has become a multi billion dollar industry.

This social climate has two effects:

Firstly, many undercover autists who are more or less successfully clinging to a job that provides them with a livelihood will strive to remain undercover at all costs – that is until they reach breaking point and fall off the cliff. Similarly, given all the incorrect negative stereotypes, only few autistic artists, musicians, and academics openly identify as autistic.
Secondly, virtually all undercover autists who are working in non-stereotypical roles, for example as social workers, clinicians (often highly competent in their areas of specialisation), as carers, nurses, teachers, administrators, etc. will remain undercover until they fall off the cliff or exit the workforce. The size of this second group may well be as large as the first group, but it hardly ever gets mentioned because the stigma is so extreme, and because the bullying in the healthcare sector is pervasive, and not limited to autistic people.

The journey towards a healthier relationship with the ecosystems which we are part of starts with the most powerful tool at our disposal, the introduction and consistent use of new language and new ways of thinking about diversity and the human species.

Tools for surviving in a W.E.I.R.D. world

No large organisation can claim to have a genuine commitment to diversity and inclusion if it does not subscribe to independent oversight by marginalised segments of the population.

The objectives of the autistic and neurodiversity civil rights movements overlap significantly with the interests of those who advocate for greater levels of psychological safety in the workplace and in society in general. In the workplace the topic of psychological safety is relevant to all industries and sectors. Creating and maintaining a psychologically safe environment is fundamental for the flourishing of all staff, yet in many organisations psychological safety is still the exception rather than the norm.

There is a need for a trustworthy service that enables employees to rate their employers in terms of psychological safety and inclusiveness for:

all staff
autistic and otherwise neurodivergent staff in specific
LGBTQIA+ staff in specific

The service designs referenced below emerged two years ago out of the autistic community and are available in the public domain. The many considerations that have shaped the service designs are documented in detail on this page. The design rationale easily translates to any marginalised group(s).

Companies can subscribe to independent oversight via an Employer Rating Service. Individuals and companies can contribute to and engage with the Employer Rating Service via two anonymous surveys in conjunction with the related Bullying Alert Service:

The psychological safety baseline database ➜ Additional context ➜ The survey, which does not collect data on specific employers but does collect information on the location (country) and the economic function/sector of the employer.
The employer rating service ➜ The survey, which collects data on specific employers. Employers are encouraged to subscribe and to use the service for regular psychological safety audits. Please note that in order to maximise the protection of employees, the Autistic Collaboration Trust will never share information about who participated in the survey nor any of the anonymous individual responses with employers nor with any other party.

The Autistic Collaboration Trust engages with the wider neurodiversity movement and other minority groups to catalyse trustworthy and globally accessible Employer Rating Services that are administered by volunteers from minority groups.

The Autistic Collaboration Trust can also offer relevant software tools and assist with establishing an intersectional team of independent volunteers that represents various minority groups.

If you would like to promote and establish the Employer Rating Service and the Bullying Alert Service in your geography, please contact Jorn Bettin via the form at https://autcollab.org/projects/employer-rating-service/. Both services can be operated at a regional level by groups of volunteers coordinated via the DJN, supported by the Autistic Collaboration Trust.

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You can connect with Jorn Bettin directly at: https://jornbettin.com

Would you be willing to share your experiences with the Design Justice Network? There are no prerequisites (including a traditional design background), and past stories have featured members working in a variety of fields such as social work, community organizing, and handicrafts. We make the process easy for you (no writing involved!) and will only share what/how you consent for us to. We are particularly interested in hearing from members outside of Europe and the North American East Coast. If you have questions or interests, please contact lydiahooper@gmail.com.