Anyone who has a disability, like those without disabilities, can experience psychological, physical, and spiritual suffering; struggling against often—overwhelming barriers; battling for some order in our ordinary everyday lives; fear of chaos. However the disabled can also face immense obstacles of discrimination, be victimised and abused by others; being patronised, treated like a small child.
The National Theatre production of Mark Haddon’s novel The Curious Incident of the Dog in the Night-Time gives lucid insight into this. The play adapted by Simon Stephens is an outstandingly sad and uplifting adaptation about a family breakdown narrated by a 15-year-old boy called Christopher who loves dogs, lists, numbers and accuracy and hates the colours yellow and brown, and being touched, and who had what was commonly assumed to be Asperger’s. Christopher’s journey is an all-too-human account of failed relationships, confusion, anxiety, pain and finally hope. Like Christopher I meet many people with disabilities who are struggling to make sense of pain; to try to reduce and minimise the suffering; to follow back to primary causes; to see the learning in it. At the same time trying to reach for joy and love; for some harmony with the universe; to avoid becoming split off and alienated.
Pain as a term appears so rarely in literature that it indicates some sort of basic denial by the professionals. From my own experience pain involves feelings of disease; a sense of impermanence; feelings about getting older and losing capacities, especially memory, dying and death, colds and inﬂuenza; coughs to rigor mortis; general discomfort, toothache, lumbago and rheumatism, depression, despair, loneliness, confusion and being ‘lost’. . . . Feelings of being isolated and cut off; of becoming a non-person echoing states of fear and anxiety; friends and relatives getting ill and dying.
The poet Clare, through years of pain and alienation, wrote:
‘Into the nothingness of scorn and noise,
Into the living sea of waking dreams,
Where there is neither sense of life or joys,
But the vast shipwreck of my life ’s esteems;
And e’en the dearest— that I love the best —
Are strange — nay, rather stranger than the rest.
(John Clare ‘Selected Poems’ Everyman 1965 p297)
And Shakespeare wrote of a similar experience.
‘ . . . Horatio, what a wounded name,
Things standing thus unknown, shall live behind me.
If thou didst ever hold me in thy heart,
Absent thee from felicity awhile,
And in this harsh world draw thy breath in pain,
To tell my story.’
(Shakespeare ‘Hamlet’ v, ii 358)
Habitually we put ourselves in the way of pain; even in concrete ways like smoking or drinking to excess. These ways frequently take us ‘out of control’. We like to ﬂirt with danger by increasing the risk of injury to ourselves; we can feel, that sometimes in the way we drive a car. Our psychology colleagues talk of sado—masochistic elements in personality. We can ‘enjoy’ a kind of suffering; just watch a suffering jogger on the road pursuing health, running through the pain barrier: the popular ‘no pain no gain” philosophy.
So much of what we do is damaging. We are continually losing contact with our essential nature in steering too close to pain. The concept of ‘internal saboteur’ is useful. We can easily become our own ‘worst enemies’. For some, the regular experiencing of pain is one of the very few ways in which to be reassured of our very existence. Much of helping involves facing the suffering and hypocrisy so prevalent in our society. This can be overwhelming, especially if we have very little emotional support.
I talked once with staff at a South East London training centre who couldn’t accept the grief of Sam, a man with learning difﬁculties. They couldn’t empathise with his loss of both his father and mother within six months. He’d had to move from his home into a local authority hostel. One year after, staff felt either that he should be through the pain by now or that ‘People with Down’s Syndrome don’t’ grieve’. Sam struggled not only with the loss of the two people who lit the most to him as well as his comfortable home, but also with the ritual rejection from the support workers, who were constantly trying to cheer him up, get him out of the sulks’.
An inability to recognise the person’s grief will make them lonely at the very time that they need other people and love and friendship. They not only need their grief recognised, they also need permission to grieve, especially if they live in a large institution where so many of the activities that take place are a sort of whipped—up happiness. It would seem that a ﬂight into jollity is often used as a means of stifling grief by staff who do not know how to help bereaved people.
The effects of illness and physical pain can also be missed or misinterpreted. I met Darren, a young 23 year old man who became angry and threw some crockery against the kitchen wall. He was sent to his room by his family and carers. His anger and distress continued and support workers eventually called the psychologist. Psychologist concluded his outburst we attention seeking. Darren’s behaviour however had a physical cause, nothing to do with his disability, or attentional needs. Later on that week Darren was admitted to hospital for treatment for an cancer of the stomach. Darren later returned home distressed unable to cope with being in hospital. He died two weeks later with the full support of his family and carers.
Intense suffering can drive us inwards and cut us off from those who love us. They are or seem estranged. This asks questions about whether the pain of different individuals is sensitively accepted and recognised. We can learn something by asking:
What is the nature of suffering for any of us?
What help is given to understand that?
How is growth encouraged from ordinary pain to joy?
What healing can there be with dying and death?
What is the role of beauty and joy?
How far are the support and services a source of pain?
In what ways do the services assist in this creative process or are part of the problem?
Do they provide an atmosphere of ‘realistic optimism’?
Are the staff spiritually aware and sensitive about what it means to be human both for themselves and for those
whom they are supporting?
Is suffering seen in fundamentally human ways, recognising our commonality, compassion, rather than wrapped up in professionalised jargon and ideologies?
Much of the suffering by people with impairments is unnecessary. The ﬂight from pain often turns into a ﬂight towards it. The Disability model holds that serious illness and physical or intellectual impairment exists but only become disabling because of the rejecting and oppressive response to such impairments by the non—disabled world. But pain and suffering can also come close to humour. Bauby writes after his massive stroke: ‘Whereupon a strange euphoria came over me. Not only was I exiled, paralysed, mute, half dead, deprived of all pleasures and reduced to a jelly—fish existence, but I was also horrible to behold. There comes a time when the heaping—up of calamities brings on uncontrollable nervous laughter — when, after a final buffet from fate, we decide to treat it all as a joke.’ (Bauby 1997)
Pain and suffering is a crucial part of nearly everyone’s story. Tendency to run away from or ignore the suffering and pain — both our own and others; to avoid and escape; drowning in drink, drugs and rock ‘n roll, are endless. Other people’s fears are much like our own. We can learn to look at people as if through a glass screen. Much personal growth and love is needed to work in more—involved, creative, and constructive ways. Most frequently we are asked to be advocates and witnesses. And Haddon expresses this too. The novel and play gives insight as to what we need to understand something of the lives of others. Empathy. Imagine trying to understand either Hamlet or Lear without empathising and knowing that they are both driven men, tortured by pain, how can we know what is happening to them. It would be entirely laughable.