Summary: A perspective from someone with MS on Brexit and its potential impact on his/her life. The author is a professional journalist, who frequently visits our blog and volunteered this piece; it was not commissioned. For obvious reasons, he/she wants to remain anonymous and has penned this under his/her blog pseudonym iaino.
In the far-off Pacific, in the islands of the Trobriands, there is a language called Kilivila. And that language possesses a word that struggles to be translated into English – or any other language, for that matter.
Mokita means a painful fact that everyone is aware of, but which – out of compassion – no one dares mention. The ability of a group to manage mokita is said to be deeply admired. Multiple sclerosis might be a case in point. People may know you have it, and the flip and the flop of your feet on pavement will testify to it, but – like Voldemort in Harry Potter – it is a thing that dare not be named.
There are, of course, words in English that, like Mokita, do not translate easily. Brexit is one of them.
Like Mokita, Brexit slips through our fingers when we truly try to interpret its meaning. Of course, on a basic level, it refers to the prospective withdrawal of the United Kingdom from the European Union. But on a deeper level, it means so much more. To some, it is a symbol of national pride, hope and of better days ahead. To others, it is a rejection of hard-fought liberal ideals, a slap in the face to multiculturalism and a green card for racism and bigotry.
But to everyone Brexit means one thing: uncertainty. Even Boris Johnson, for all his bluster, cannot know for sure what will come of it. And, to people with Multiple Sclerosis – that most uncertain of diseases – it must mean uncertainty layered upon uncertainty.
Why should this be? Well, on a very simple level, Brexit poses great uncertainties to our future health.
First, Brexit raises the issue of who will treat us after the barriers come down? Screeds have been written about how the NHS is staffed by people from across the European Union. Men and women who have travelled here to the UK, to hoist us onto MRI machines, slide needles into our trembling veins, inspect our Babinski reflexes are many. One of my favourite MS nurses is French-Algerian. My Cladribine research hero is a German. My last brain scan was undertaken by a Pole. Not only has Brexit been a slap in the face to them (ask them – yes, they took it personally), but it also raises the question: if they decide to leave our little island (and who would blame them?), who will take their place? Who, indeed?
Second, there is the issue of the pound. A weak pound does not just mean that sangrias at the pool in Ibiza have become eye-wateringly costly. A weak pound also hikes up our drug prices. The policy director of the Health Care Financial Management Association, the professional association for NHS financial staff, has told the BBC he expects there to be an impact on the NHS caused by the increasing cost of imports. “Efficiencies one way or another” are expected. And you know that when someone starts talking about efficiencies, it doesn’t bode well for a disease renowned for making people notably less-than-efficient. In the US, Ocrelizumab (Ocrevus), the first disease-modifying treatment that has been seen to have an impact on primary progressive multiple sclerosis, is tagged at a costly $65,000 per year. Will efficiencies mean that this drug will be restricted in the UK to the very few? After all, only this week tens of thousands of Parkinson’s disease patients with a mixture of dementia and psychosis were denied an effective drug due to its cost.
Third, Brexit brings uncertainty to our economy as a whole. Britain’s credit rating has just been downgraded by Moody’s. Nobel laureate economist Paul Krugman says there is ‘zero chance’ leaving the EU will make Britons better off. What impact Brexit might have on employment prospects is – yes – very uncertain. And if you are the person in the office who keeps on having to take time off for duvet days, or neurologist appointments, and all the rest, well… we won’t have the European Court of Human Rights to defend us if we are the first to be sacked.
Fourth, it brings uncertainty to scientific research, and this isn’t just because mice might go up in price. As the prestigious Royal Institution states: “the ramifications of Brexit are still unknown, but it is certain to affect jobs, funding and collaborations for decades to come.” Will funding streams dry up? Will cross-border collaborations wither on the vine? What possible cure might be lost in the maelstrom?
Finally, Brexit has fostered the shadow child of insecurity: namely, intolerance. It cannot be denied that Brexit was partly born from a fear of ‘the other’. When Nigel Farage stood in front of a poster of male migrants, supported by the tag-line ‘Breaking Point’, he used the age-old trope of ‘the other’ as the threat. The barbarians were at the gates. It’s the daily fodder for the pro-Brexit papers. Refugees are turned into migrants and migrants has turned into a dirty word. To me the issue is this: when we get into the politics of explicit bias – where ‘the other’ becomes a potent symbol for people to be distrusted and reviled, then where does that lead? Because we, people with disabilities, are ‘the other’. We are the ones that need the support of the state at exactly the same time when the state wants to demonise those who might seek support. It begins with migrants, it shifts to people of colour, then the impoverished, then the mentally ill… there is always ‘the other’. And when intolerance becomes a politically acceptable creed, those who should be most concerned are those who are least able.
So, perhaps we should strive not to apply the Kilivilian word of mokita to Brexit. Perhaps those with MS, the charities that support those with MS, the partners of people with MS, perhaps we should really begin to debate more fiercely what Brexit might mean for us. For our access to NHS staff, our access to drugs, our access to employment rights, our access to the benefits of research: all of this is now uncertain.
I do not know what this disease will do to me and I try not to worry about it, but I do worry about what Brexit could do to those with this disease. And you should too.