Thought Picnic: On the politics of adversity and the expectations I refuse to respect

Exemplary beyond words

I was listening to a BBC Radio 4 programme last night titled No Triumph, No Tragedy presented by Peter White who as the Disability Affairs correspondent of the BBC was born blind.

He was interviewing Melanie Reid who in 2010 suffered a fall whilst horse riding and the injuries sustained turned her into a tetraplegic. There were so many things she touched on the subject of life-changing adversity that I could relate to, that I thought I might write something in relation to my experiences.

One particular phrase she used was, ‘The Politics of Disability’, which I understood to be a particular thinking and mind-set that appears to create a community of people with a common experience and agitates to maintain or set a standard for how people in that setting should identify, project, speak or advocate.

The pressures to conform

As a tetraplegic and her stubborn desire not be defined by that condition, she had come against some opposition from others in similar situations who expected her to more accepting of her situation and a more vocal advocate of rights, positions and policies to serve that community.

Whilst, I have had my share of adversity and none as serious as the principals I have heretofore written about, the concept of politics is even broader than that of disability. It covers such areas as the medical, the economic, the social, the cultural, the religious and the familial dimensions of the person, their community and their society.

When you consider race, sexuality, long-term conditions, survival from cancer, attendant chronic conditions and adversity, there has always been some perception and thinking one has had to prevent from encroaching into what is essentially one's own personal story which is not entirely unique.

Expectations I refuse to respect

Yet, I find that from all those apparent groupings that have their loosely agglomerated communities, there are expectations and demands. That I am black, I am expected to identify with a political slant without questioning else I am a sell-out. That my sexuality is a private and not a subject for public discussion, I am considered either lacking pride or courage for who I really am, whereas, that is just part of who I am and hardly the whole.

Other matters on the issue of disease and the management of it, we've had cancer which in some cases is both politics and an institution beyond which it could even become a kind of lifestyle. A resignation to fate whilst the fight continues to survive and meet certain life goals. Last week, I was literally bullied into signing a petition to keep the NHS public, especially when I mentioned I was a cancer survivor, I got a good earful.

Knowing where your loyalties lie

Yet, I owe my survival not to the UK NHS but to the Dutch healthcare services that acted promptly on noticing that I had a serious condition, where they are more interventionist than reticent. A chronic condition discovered for well over two years now in our NHS has had doctors do everything but go for dealing with it. I have been observed and sweet-talked in the notion that the real damage is probably a decade away when we could address the condition now and be done with it.

It is unsatisfactory and it does make you want to find a pressure group agitating for quick decisive action rather than what looks lackadaisical almost to the point of uncaring with the hope that we expire before we cost the NHS anything for our treatments.

Reviewing this situation allows me know where my loyalties lie, knowing those who really did something as opposed to systems that pay lip service to situations they never practically affect in a positive way. In other spheres too, you begin to know that your loyalties must be borne of profitable experiences of humanity rather than have your loyalties determined by default to what pigeonholes you have been allocated.

Know your story and stick to your life

On the matter of adversity, the counts are numerous and only a few people know to any extent what the experience was, the losses were many, yet hope lives and thrives in ways that celebrate the resilience of the human spirit.

There are reasons to identify and conform, but in the end, you have to have your own personal experience written as your own story in your voice and in your time, extricate yourself from being a statistic or a number, not a patient, not a victim, not a mishap or an unfortunate reportage, but a person with a name, with a life and life they are living their own way.

Politics has its place, but the stubborn will to be different is the best story that can be told of any life that has lived on this planet earth. For that, I commend Peter White and Melanie Reid for teaching me more about facing life, not as a triumph or a tragedy, but as life the best way you can.