Roy Mitchell writes:
This article is the first of a series on diversity and inclusion issues and their effect on my spiritual journey. The articles are also based on an exploration of the practicalities arising from Advices and queries number 18:
#18 – How can we make the meeting a community in which each person is accepted and nurtured, and strangers are welcome? Seek to know one another in the things which are eternal, bear the burden of each other’s failings and pray for one another. As we enter with tender sympathy into the joys and sorrows of each other’s lives, ready to give help and to receive it, our meeting can be a channel for God’s love and forgiveness.
For 39 years chronic fatigue syndrome (CFS, also known as ME) has been a part of my life and although not a sufferer myself it has had profound effects on both my experience of community and my spiritual journey. These experiences have provided me with insights both about my own reaction to people with disability and the wider community’s reactions to people with disabilities. I do not pretend to have the answer to the question which introduces Advices and queries #18 above.
However, my close association with those with ME and also of working for charities in both the health sector and access to employment opportunities for disabled individuals has demonstrated to me just how complicated and difficult the answer to the question posed by Advices and queries #18 can be.
In the sharing of these complications and difficulties I hope this will assist individual Friends to find their own best answer or response to the question posed above.
It may surprise many of you reading this to find out that what we think we know about ME or CFS in the UK is not universally shared across the UK medical profession or throughout the world. There are in fact two major medical views of ME. The dominant UK medical view is the one which considers that patients can think themselves better, or at least they can do more than they say they can.
The other medical view is one which regards ME or CFS as a biological illness that should be treated and researched as such.
It may also surprise you to learn that in a legal setting such as deciding entitlement to welfare benefits which are contingent on the sufferer having a physical or biological illness, that independent legal scrutiny (time after time in my 39 year experience) finds in favour of the biological view of ME. This is because it can explain itself by reference to objective findings, whilst the dominant UK psychological view of ME is wholly subjective in nature and cannot explain why it takes a different view of the illness from biological medicine.
The compassionate response that each medical view takes towards the ME sufferer is also widely different. The psychological view of ME-compassionate response can at best be described as ‘tough love’ as any help given to the sufferer is ‘conditional’ on them ‘accepting’ they do not have a physical illness. To help patients (and their carers) in this ‘acceptance’ all access to biological medicine and welfare support is blocked. When patients and their carers protest this situation they are characterised (stigmatised) as ‘activists’, and we the ‘non sufferer’ are encouraged at a very subtle level to see the ME sufferer as misbehaving in their illness behaviour.
Not being aware of or not being given information on these two ‘competing’ medical views of the same illness is the first barrier that prevents any right ‘acceptance and nurturing’ of people with ME, and very often their carers. The point here is the specialised nature and complexity of the information required to make an informed judgement about the appropriate compassionate response to people with ME means that we are reliant on ‘expert medical opinion’. The choice of compassionate response is made for us by the medical view we are given. But where is ‘justice or fairness’ of choice in our compassionate response when only one of the possible medical expert opinions is given air time and the other largely suppressed in a ‘competitive’ medical care environment which exists within a ‘competitive’ democratic society?
The layers of complexity and the barriers to acceptance and nurture for the ME patient (and in other hidden disabilities) within all communities (including family and friends) are therefore fraught with difficulty because of the reality of this ‘competitiveness’ and a lack of ‘fairness’ in the presentation of relevant information. A lack of ‘fairness’ is not unique to the psychological medical informed view of ME. But it is present in any compassionate situation where a free and open response from the receiver of compassion is curtailed by the imposition of any conditional requirement by the giver of compassion before that compassion is given or can be received. At first sight this last sentence may pose difficulties for some, but I hope clarification of my meaning and the personal truth contained in this statement will become apparent as this discussion continues.
The societal pressure (competition) to conform to certain behavioural or cultural norms, as set by ‘opinion leaders’ or evolving customs, and the individual’s ability to conform or perform to meet these behavioural/cultural norms very often dictates the level of acceptance individuals experience or are granted within any grouping or society.
Love through blue mist: an original artwork by Vanessa Mitchell, late wife of the author.
In the next discussion I will look at ‘competitiveness’ and ‘fairness’ in greater detail to draw out how each of these concepts can lead to very different compassionate responses and the ‘choices’ they allow or curtail for all individuals.
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