The Five Working-Guidelines of the Radical DisABILITY Protocol

As with everything else in this experimental protocol, these working-guidelines are hypotheses. They may all be wrong. But for the moment they are general directions that guide everything I am experimenting with. They are Goals, not Rules. That way, it doesn’t matter if I go off course because I can then use these guidelines to head me back in the right direction.


  1. Aim to prioritise state of mind above all else

No one can feel ‘up-beat’ all the time. But, if life never feels worthwhile then the other four Guidelines risk being redundant. So, supporting self-esteem, a sense of style, and practical independence are far more crucial than in traditional protocols.

  1. Aim to remain rigorously ahead of the curve

This is about more than just being proactive – it is about maintaining as much control as possible. Avoiding being caught out requires starting from a brutally-honest view of realistic likely scenarios and then fully planning for them far in advance.

  1. Aim to maximise Quality of Life but minimise Care

Traditional protocols rely heavily on Carers – for instance for toileting – but this severely breaches the First Guideline. In contrast, a triple-ostomy with removal of the rectal stump is a one-off major intervention that is sustainably liberating.

  1. Aim to apply cutting-edge Hi-Tech to everything

MND research fixates on biomedical work but Hi-Tech’s power grows exponentially and we need to ride that wave. Medical monitoring, life-support, VR/AR, comms, can all be integrated into a robotic wheelchair and auxiliary-control-centre bed.

  1. Aim to never accept orthodoxy without question

For MND, one size can never fit all – yet traditional protocols default to standard responses (e.g., general-acting baclofen rather than targeted Botox). Choose Science, not Habit. Explore imaginatively-unconstrained cross-disciplinary options.