"An examination of individual autonomy and the rights of disabled people "

Individual Autonomy, Disabled Rights and the Strictures of Regulations.

This topic can at anytime become the concern of any individual, whether or not they are presently old or disabled. For everyone, it is only a matter of time!

In the past twenty-five years the concept of disability rights has seen a steady growth, since that heady day when Ed Roberts, Director of Rehabilitation for California USA, and himself a poliomyelitis sufferer, reduced a chaotic meeting of disabled people to silence when he shouted the slogan: “Cabbages of the world unite!”. With its roots in the struggles for Black Civil Rights and the early Feminist Movement, the notion of disability rights is closely linked to the concept of individual autonomy.

The concept of autonomy became central in the influential moral philosophy of Immanuel Kant in the 18th Century. In Kant’s ethics, autonomy was considered the ability to know what morality requires of us, and functioned not as freedom to pursue ends, but as the power of the agent to act on objective and universally valid rules of conduct (i.e., the different formulations of the categorical imperative), which the will imposes on its self through pure reason. In contemporary thought, autonomy is most often equated with self-determination and individuals are said to be autonomous when their actions are truly their own. As the twentieth century philosopher John Rawls put it: “Each person possesses an inviolability founded on justice that even the welfare of society as a whole cannot override”.

In modern medical or social work terms, this is usually be defined as: The right of patients/clients to make decisions about their medical and social care without their health care or social welfare provider trying to influence that decision. Such autonomy does allow for care providers to educate the patient but does not allow the health care provider to make the decision for the patient.

With the growth in recent years of Health and Safety Regulations there has arisen a number of conflicting situations in this area of the rights of a disabled person to try to live her or his own life in the manner of their choosing. The requirements to have two carers, for instance, may restrict the disabled (or elderly) person’s freedom to choose the time of eating meals, going to bed or getting up, even when to go to the toilet!

In a system where the disabled client is required to pay for two carers, where one might be perfectly adequate, (as in the actual case of an elderly man who was required to pay for two carers to help with meals, despite the fact that only one worked while the other sat and ate his sandwiches!) creates a situation where the client/customer is required to pay for services offering a singular lack of choice. The disabled, and often very vulnerable, person (especially in the case of the very elderly and the mentally ill), may be pressurized by a social worker to accept restrictions and curtailing of their freedom of choice in such cases. There can (for instance) arise the situation where a younger woman with feminist sensibilities, is dealing with an older male client who may lack postmodern sensibilities, resulting in a clash of personalities. This can cloud the issue and lead to unfortunate consequences for the disabled client. Indeed such problems have led to some disabled persons rejecting the need for social workers at all! (See the interesting string of correspondence on the BBC Message Board ‘Ouch!’ It’s a disability thing, on: www.bbc.co.uk/dna/mbouch/F2322273?thread=3523601 - 66k –) Where a student social worker posed the question (qua a set essay title) ‘Do Disabled People Need Social Workers? The resultant replies are interesting particularly one from a social worker (Yvette), who retired on sickness grounds, found she was now a recipient of social care herself!

There is also the tangled situations which can arise where a vulnerable and often isolated and lonely, disabled person seeks the friendship of his carers/social worker. Obviously this can lead to situations where abuse and exploitation of the disabled client by an unscrupulous person and rules have been set up prohibiting such friendships. However, such a relationship can result in a fruitful and fulfilling friendship where common interests and personal characteristics can result in a considerable enrichment of the disabled person’s life. It is in these areas where the rights of an individual disabled person to choose his own carer and friends can bring about a diminution of personal autonomy.

The UN Convention on the Rights of Persons with Disabilities states:

(Codicil n) Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices.

and

(Codicil o) Considering that persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them.

Herein lies the kernal of a dilemma inherent in the current situation regarding the individual autonomy of the disabled person and Society’s duty to protect and provide for the weak and vulnerable members of that society. The nature of Social Care with its ‘modules comprising individualized packages of care’ seems on the surface to be exemplary , unfortunately in some cases, perhaps arising from the overzealous personality of the social worker, the situation arises which I call the ‘Bed of Procrustes dilemma’. In the ancient Greek story Procrustes was a bandit who would capture unfortunate travelers and make them lie upon an adjustable iron bed. If they did not fit the bed Procrustes would cut off parts of their body to make them fit the bed. It seems to many disabled people that some social workers see their packages of care rather like Procrustes bed. If the individual needs of the client do not quite fit the package then instead of modifying the package they wish to force the client to fit the package! This is also true of some aspects of the Health and Safety Regulations which are often interpreted in harsh and unwarranted ways.

Such important ethical and legal problems need to be recognized and examined more closely by those in authority such as senior social workers and medical ethics committees if a truly just care system for the disabled and elderly can be said to exist in the UK.