I find myself on the horns of a dilemma. I know that whatever action I choose will upset or disappoint some. That is unavoidable. Let me give you some context.
I have been diagnosed with Parkinson’s for more than 19 years now and have, for much of that period, been an active advocate for patient power if you will, endorsing many actions and initiatives.
Chief amongst these is the World Parkinson’s Congress (WPC), a triennial International conference interfacing clinicians, researchers and active patient advocates. There is in my view no better forum for learning (on all sides) than at this conference. Where else might clinicians have access to a thousand patients? Or patients find the opportunity to quiz the greatest minds in Parkinson’s? The answer is nowhere. WPC actively facilitates this interaction in a way that no other conference can manage. I have been to every single WPC meeting from Glasgow onwards. I have watched it grow in size and scope over the years. I was honoured to be one of the first group of WPC ambassadors.
Initiated by Stanley Fahn and now under the executive stewardship of Eli Pollard, the meeting has gone from strength to strength. I have consistently supported the meeting as presenter, advocate, blogger and so on. Under normal circumstances my attendance would be a given.
But these are not normal circumstances. Science, medicine and healthcare in the US are under attack in ways hard to imagine for a civilised nation. Under the cloak of presidential autocracy, president Donald Trump has unveiled policies calculated to diminish the standing of his political opponents. Journalists are threatened with dismissal or their voices silenced. Foreign students, legitimately present in the US, are having their rights removed. Some are even deported. Prestigious universities are under attack. Gradually – at a speed almost unnoticed – liberty is being eroded. This is not the politics for which the US has been justly praised – the compromise politics of yore. This is the revenge politics of a dictator, gradually eliminating his opponents and announcing their disposal at carefully managed rallies.
Okay, it’s red baseball caps this time instead of armbands. But the parallels are there. And sneering at the discomfort of his opponents is Donald Trump. It is not a figment of my imagination. America is sleepwalking.
Some years ago, at the inauguration of the first Trump administration, I vowed to a very good friend of mine that, such was my revulsion of Trump’s racist policies then, I would never visit the US whilst Donald Trump was president. I would not support his administration, tacitly or overtly, My friend has since passed away but that does not absolve me from my promise. Despite the personal cost, I intend to keep that promise and will therefore not be attending the WPC in Phoenix next year. Some things are bigger even than conferences. I would not feel comfortable attending this conference knowing that Trump’s anti-American policies would prevent others, from other countries, attending. This is not the great country I used to visit and take pleasure in doing so.
I want to be able to attend the conference again. I will be missing old friends that through the ravages of the illness may not make the next one. I may not myself. But I cannot square it with my conscience.
What will my tiny protest achieve? Probably nothing. But promises are promises. And whether President Trump would understand that or not, they are meant to be kept.