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The Dynamics of Disability
The role of carers compared to the role of professionals
The recent cases of appalling treatment of families with intellectually disabled children at the hands of the Health Service Executive, North Eastern Division have thrown to the fore a concept which has been hitherto largely invisible – the power dynamics that underlie the field of disability. At first glance this may seem an unlikely area for hefty socio-political pondering but a little lateral thinking around the subject goes a long way and reveals much.
Let us consider the scenario of the O’Hara family who campaigned ceaselessly and over a long period of time for the services and supports appropriate to a family caring for four autistic children plus one with learning difficulties. They did not get those services or supports and the consequence of their insistent and sustained campaign was the removal of their children. The overt abuse of institutional power here was all too visible but if we look more closely at the situation a covert institutional discourse is revealed that creates and sustains the inequitable dynamics of disability and, in the process, bolsters professional hierarchies and saves the State a fortune.
The best way to illustrate this is to directly compare the situations of ‘non-professional’ carers (i.e. all those who provide unpaid care for children, relatives etc. because of their familial/social bonds) with the conditions of work of their professional counterparts. For most people, being a carer is a dictate of circumstance and not a career choice. Most carers, because of the needs of those they care for, are either unable to work or their prospects of doing so are severely limited. They subsequently enter the twilight zone of the ‘non-worker’ regardless of the fact that they may be providing unremitting attention 24/7/365, with no end in sight.
As ‘non-workers’ they are frequently dependent on State benefits, primary of which, the Carers Allowance, is means-tested as are many supplementary allowances. As non-workers, carers have no contract of employment and thus have no rights to reasonable or social working hours and no rights to tea-breaks, lunch breaks or evenings or weekends off. They have no rights to holidays and rarely get them. They have no entitlement to either sick leave, sick pay or pensions provision. No matter how long or hard they work or how expert or proficient they become they have no prospect of promotions or increases in pay. They have no external structure which acknowledges or appreciates what they do. In fact, many would say the opposite is true and that the systemic structure within which they have to operate devalues and demeans their role.
If caring were a career choice no-one in their right minds would choose a job with such low pay and such poor conditions of service. What then would become of all those who are being cared for and how much would it cost the State to replace the services of this twilight army?
Carers have no union to negotiate on their behalf or to represent and protect them and if they wish to try and alleviate their demanding situation to even the slightest degree they have little choice but to turn to those who have had the luxury of choice – the healthcare professionals and their administrators.
If we look, by contrast, at the conditions of employment of those professionals it becomes painfully obvious how very unacceptable the plight of the non-professional carer is.
All aspects of a professional’s employment are contractually agreed and are thus legally protected and these are usually negotiated and reinforced by union membership and representation. Reasonable working hours are designated and proper breaks during those hours are a legal and contractual entitlement. Professionals enjoy the benefits of mandatory holidays, paid sick leave, pension provision and appropriate professional renumeration. They are usually able to avail of training programmes within their working hours and such input is provided free of charge and is deemed desirable for professional and career development. The prospects of promotion and pay increases are taken for granted and performance will be discussed, either positively or negatively with seniors.
Now let us look a little deeper at the less obvious discrepancies between the professional and the non-professional domains.
Stress is a well-documented and acknowledged factor in all of the ‘people professions’, despite the comparatively excellent conditions that they work under. One of the chief reasons for the designation of reasonable professional working hours would be the intolerable stress that constant, unremitting work would place on an individual (the right to a family and social life notwithstanding). If the professional, even within the bounds of their designated working hours, suffers debilitating stress then he/she may take paid sick leave and it will invariably be seen as one of the hazards of the job. Holiday entitlement is likewise recognised as vital to a worker’s balanced and stress-managed life and, thus, will also be seen to contribute to their optimum working efficiency. No permission has to be sought for sick leave and certainly no judgement is ever passed on someone taking their annual holiday entitlement.
How different for the non-professional carer! Should they find their situation unacceptable or stressful, their only recourse is to turn to the professionals who are employed ostensibly to support them but when they do, we see how the discourse changes. There is no ideology of entitlement for the non-professional carer. They are, after all, non-workers and nowhere is this more apparent than in the inherent contradictions of language that describe their plight. This is where the true dynamics of disability are revealed.
Taking a break requires ‘Home Support’. A ‘holiday’ is reconfigured as ‘respite’ and both of these services are usually either non-existent or minimal and often have to be fought or begged for. The amount of effort that many carers have to exert to obtain such services frequently becomes such a source of stress that they either give up trying or find that any positive benefits are negated. Attempts to obtain extra financial assistance for exceptional needs take the carer into the realms of means testing, supplementary allowances and discretionary payments.
The positive, achievement-oriented terminology of the professional is turned on its head. The non-professional carer needs support and respite and, childlike, can only minimally raise their already low income by the dispensing of allowances at the discretion of others, and even then this will only be granted as long as they do not have much supplementary income above the level of their benefit. Non-professional carers are thus defined and bound by the imposition of the semiotics of non-coping powerlessness and worse still are the assessments and judgement that they are exposed to in order to access even these minimal institutional beneficences.
Sadly, it is often the case that carers can only successfully access supplementary services by forcefully highlighting the extraordinary difficulties of their situation. Whilst admission of stress is perfectly acceptable in the professional milieu, it is something a non-professional carer admits to at their peril, as witnessed in the cases of the O’Haras and the Mohans. At best, this can lead to derogatory and negative judgements being recorded on a carer’s file of which they may have no knowledge. At worst, we all know what may happen.
There is an inherent paradox here. The non-professional carer works superhumanly under the most taxing conditions and yet, primarily because their caring is motivated by true care, they rarely falter and their care is unstinting and of the highest standard. By contrast, the personal accounts of many of such carers, most especially those caring for children, bear testimony to a professional care system that leaves much to be desired, not least in the sphere of attitudes and assumptions.
Perhaps the most pertinent and useful question that healthcare professionals should be asking themselves is how they would feel and how they would cope if their situations were reversed? And most especially, what they think they might do about it.