Might as well post my draft here, why not?!
#FeedbackFriday - Well, it’s Friday in some countries already
WAFFLE ALERT!!! WAFFLE ALERT!!! WAFFLE WAFFLE WAFFLE!!!
Thought I’d post up what I’ve got so far for my 1pm deadline in case any other lovely people happen to drop by and care to take a perusal over my proposal. It’s a bit ‘dry’ but it is a first draft. I find it much easier to big up other people than myself, although I realise some might not see it that way lol.
Picture credit: I googled “pie on ears” and this was the first thing that came up.
PDA Pioneers Club Executive Summary
PDA Pioneers Club is a project to foster connections between those affected by Pathological Demand Avoidance and the tools and teams providing help across three critical areas for evolution - Health; Wealth; and Relationships.
Proposed by Professor Elizabeth Ann Newson OBE over 40 years ago in 1980, PDA is still not officially recognised nor widely known about, and thus PDAers and those around them are left without appropriate help resulting in high levels of unemployment and suicide rates.
There are a number of individuals, groups and organisations who are pioneering changes, from training PDAers to train others instead of non-PDAers being the trainers, to lobbying schools and government for appropriate help to this specific condition with its own unique needs and requirements compared to others on the spectrum.
This project is a proposal to support their current efforts as well as a plan to provide a leading edge technology platform and sustainable operating model in order to grow their efforts. Focusing on PDA as the most urgent need, the service will be expanded to cover other neurodiverse conditions when feasible.
PDA is an Autism Spectrum Disorder characterised by a Pervasive Desire for Autonomy. PDAers needs to live their life according to their own rules, their own code and compass, and would really prefer the world changed to fit that. This can make PDAers great activists and revolutionaries, people who lead and inspire others and ultimately pretty awesome people, except when they have to live under other people’s rules and demands.
This is the journey founder Stephen B Purkiss experienced, discovering PDA in 2020 at the age of 48 after suffering from what he now knows was Autistic burnout from masking, just before masking entered mainstream popular culture. During recovery from a severe Vitamin B12 deficiency where he couldn’t stand up or think straight four years ago, Stephen encountered numerous problems related to information discovery, access to appropriate services, and funding that he had also experienced and provided a number of improvements to during his career unknowingly leveraging these PDA traits as an activist in the Free/Libre Open Source Software community.
With forty years since he first played with code, Stephen has thirty years IT industry experience and his first website project twenty years ago was for Volkswagen UK, delivering the first ever online car configurator.
After the dotcom crash, Stephen discovered community-built Free/Libre Open Source Software, helped UK Councils save millions of taxpayer pounds, and was the first ever community-elected Director of the Drupal Association, a non-profit organisation supporting the Drupal Open Source project, the largest Open Source community of contributors in the world.
Stephen set up an online system for Drupal businesses to connect and collaborate as well as for customers to connect to those with the specific skills and expertise they required for their projects. Encountering PDA Pioneers in his discovery, Stephen saw how the issues he experienced in the commons-based peer produced world of Open Source could also be applied to help in the world of neurodiversity that is woefully served by the current official health systems around the world.
One key issue identified from research was the lack of resources to learn entrepreneurship in order to be self-employed as many PDAers are. Whilst many fellow PDAers share their story, parents especially were keen to discover more of the methodology and this is one main area of expertise founder Stephen has, having been part of the Entrepreneurs Institute for the last 16 years and recently completing his Flow Consultant training.
Being able to share his learnings and provide mentorship to others with similar need for autonomy, Stephen believes this could be a key differentiator for the PDA Pioneers Club and hopefully lead to numerous turnarounds in the lives of others.
Having companies partner and perhaps become patrons, it might also be possible to provide funding in order to help a number of PDAers keen to change their lives with the opportunity to apply to be considered for such a wonderful opportunity!
Other key areas relating to health and relationships will be addressed similarly, partnering with experts from within the existing PDA community and the wider world in order to grow a wealth of useful information and resources over time. Revenues are expected to be gained from promoting partner services and creating focused packages of services from multiple partners collaborating on addressing key problems raised by the community as the most urgent requirements.
This partnering approach provides a win-win-win situation where more targeted service offerings help the service provider increase sales; the community members gain via economies of scale for services many may not explore or be exposed to on an individual basis; and PDA Pioneers Club wins with a clear route to sustainability provided by a business model in direct alignment with the success of its partners and members. It takes time to bring communities together, and funding to negotiate and develop partner contracts, plan and execute promotions. Sponsorship would ensure PDA Pioneers Club became a reality.
Initially a Facebook group and mailing list to grow community and discover functional requirements, the intention is to create an independent community owned and operated online asset organically based on the emerging distributed, decentralised Holochain technology. This technology provides users complete control of their privacy and data, as well as helping to overcome a number of social issues that occur when interactions are concentrated into a small number of groups instead of a more natural system where birds of a feather can flock together.