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.
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.
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.
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.
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.
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.