From disability to ability – equal access to empowerment
On May 11th the Sailing Sclerosis Foundation’s sponsor Biogen hosted an Educational Dinner at the Soul Bar and Bistro in Auckland. The dinner was chaired by Dr. Ernie Willoughby, Consultant Neurologist at Auckland City Hospital and the topic of the night was empowerment in connection to people living with MS. Scientifically speaking empowerment is a concept which is difficult to pin down into a clear definition, but which has nonetheless proven to be a key factor in improving life quality of people living with MS.
The first presentation of the evening was given by Dr. Elizabeth McDonald, Rehabilitation & Medical Director of MS Australia ACT/NSW/VIC. Dr. McDonald is actively involved in clinical consultation and education of people with MS and her research interests have focused on the impact of MS and included physical impairments, the role of exercise, sexuality, quality of life and the economic burden of MS. Dr. McDonald discussed empowerment by reviewing the latest scientific data from Australia on the impact of exercise, social interaction and empowerment on the lives of people with MS.
This led on to a presentation by Dr. Mikkel Anthonisen, Doctor, Psychotherapist and Founder of the Sailing Sclerosis Foundation and Oceans of Hope project who showed an example of how to put this knowledge into action by sharing his observations from a journey in the real world: The first ever circumnavigation by a yacht, Oceans of Hope, crewed by people living with MS.
Dr. Anthonisen provided statements from the Oceans of Hope crew and conveyed an exciting example about integration of those with MS into an active community and how this can be life changing to the people involved. He explained that being on a boat, taking up the challenge of sailing around the world creates a community, which represents a framework for a meaningful life. Being on a boat requires hard work and commitment, it is socially challenging and it creates strong bonds between the crew taking part in the endeavour. He continued to say that the MS crew all experience a deep sense of worthiness and recapture of lost identity and that the research based knowledge of the benefits of exercise, social interaction and empowerment on the lives of people living with MS are all naturally lived out on a boat.
He then emphasised that communities based on values of inclusion, worthiness and self-efficacy are central to empowerment: ”it is important to remember that we cannot empower people, but we can create communities in which people can empower themselves”, he said and rounded off his presentation by concluding that being on a boat can be seen as a metaphor for life: “Being out at sea we are somewhat in control with all the precautions and safety measures possible, but at the same time completely at the mercy of mother nature. This is obviously a general existential human premise of life - and very much present in the lives of people with MS”.