Many mornings I wake up and, though for increasingly less time, am still transported back into my real body, where I sit up, stretch, plan my clothes, the calls I must make, the day’s activities. Then full wakefulness kicks in and I realise that I am trapped in an alien body, which has taken over like some macabre joke by the universe, which can only progress to the end song of death.The human defence instinct, the will to live, is a remarkable if completely irrational part of the – or at any rate my – psyche; instead of turning my face to the wall and letting go gracefully, slipping downstream like Ophelia, I continue in a battle the outcome of which is pre-ordained but where gaining the upper hand in a skirmish affords me deep if fleeting pleasure, providing existential meaning in an increasingly senseless existence. Azar Nafisi when writing about life under the ayatollahs in Iran of the 80’s and 90’s sums this up perfectly in the following lines, ”it is amazing how, when all possibilities seem to be taken away from you, the minutest opening can become a great freedom”.
Disability like most things human is many and varied in its forms. Genetic, through random accident or from explicable or medically unknown aetiology of illness, chronic, acute, progressive, in remission, self-manageable or full-time care required – all permutations of sickness and need are possible, including mental and or physical, or a combination of both such as neurological. My own, Multiple Systems Atrophy (MSA) could be described as a niche neurological illness, often mistaken at diagnosis for Parkinson’s disease (PD), though far smaller in numbers affected (3,500 compared to 127,000) with no dedicated medication but only PD pharmaceutical hand-me-downs. It is often physically far swifter in progression than PD so usually results in earlier death but with generally no cognitive impairment – a silver lining in being able to retain observational powers especially if enough speech remains for hopefully enjoyable communication with those one loves and/or likes talking to which may not be the same thing…
The issue is how the world perceives and receives those with a disability. Recently the BBC ran a week long news feature on the difficulties facing people with a variety of disabilities when using public transport. ‘Disenfranchised’ and ‘irrelevant’ might be words that describe the attitudes of fellow travellers to those with guide dogs or using a wheelchair, as well as the problems caused by stations without wheelchair access, or signs that can not be seen easily by people with sight problems or in wheelchairs. People need to take notice of this type of discrimination , and not make assumptions about the capacity and needs of these disadvantaged fellow life travellers .Speech impediment does not necessarily mean brain impairmentDespite the odds, many people automatically assume are stacked against them, those with disabilities may be working, may be in good relationships, may be having more sex than you, dear reader. Sexuality for those with disabilities is very often a blind spot for health professionals, where even healthy, able bodied people if over fifty, especially when single and female, may not be automatically considered to be potentially sexually active. Add to this any religious and cultural beliefs and biases of the patient in conjunction with those of the health professionals working with them, and when especially considering the diversity of ethnic backgrounds of people receiving services from, or working in, state and private health and social care and walking on eggshells gains a whole new dimension.
As psychosexual therapists it behoves us to be fully aware of the possible (probable?) bereavement issues for people in losing their sexual drive and desire though factors such as premature menopause for women or for a man prostate problems and/or medication and/or disability. There may be a voluntary reluctance for anyone, single or in a relationship to start or even continue a sexual relationship when issues like incontinence becomes a factor. While nappies may not be as rare a fetish as some believe, unfortunately most people can’t or don’t develop fetishes to order or from a practical need. Being infantilised is another libido cosh; being asked if your pad needs changing or having your trousers pulled down or up are distant memories from early childhood for most, but can become an everyday occurrence for those with limited mobility and physical dexterity. Recently I heard of someone’s lack of sexual drive being referred to as ‘their pilot light going out’. Uncomfortable as such expressions make me, on a par with ‘front bottom’, perhaps it has relevance for psychosexual therapists and/or their clients if or when used to paraphrase Dylan Thomas, ‘Do not go gentle into that dark night but rage, rage against the dying of the pilot light”.
To summarise when working with any client psychosexual therapists need to constantly hold in mind the four E’s: ethics, equality, empathy and existentialism. A real familiarity with C0SRT’s Code of Ethics and Good Practice combined with the Statement on Equality, based on the 2010 Equality Act with its protected characteristics which include disability, is essential in all our work, but may have even more relevance in regard to our relationships with our more vulnerable clients. Empathy, the therapeutic lynch-pin, should never be confused with pity or knowingness, but is the delicate connection between people based on the wondering and musing of encounter in the world of I-It which can lead to those fleeing moments of I-Thou. Existential givens underpin my personal and professional philosophy; the need to create meaning in one’s life by oneself, the need therefore of taking responsibility, and the acceptance of life’s finitude all create a framework for human existence and therapeutic work and relationship.
Sarah Collings MA, MPhil COSRT accred. (non-clinical)
This blog is for informational and educational purposes only. The information provided and any comments or opinions expressed are intended for general discussion and educational purposes only. They should not be relied upon for decision-making in any specific case. This information is not intended to diagnose any condition or provide mental health treatment. Information presented in this blog does not replace professional training.