Percy Hedley Foundation

The Percy Hedley Foundation Speaks Out

New Models of Disability

As an administrator in a low incidence field of disability, I want to suggest the direction we need to move in thinking about the disabled people who we support. More specifically, how we think about the concept of disability. This is to enable us to be more effective in how we organise our services, how we communicate our message to other people, and to suggest to practitioners where we need to turn to for information that will improve practice.

What is the problem?

Professor Barry Bloomberg, NASA adviser on astral biology, was recently asked if he thought there was life on Mars. His reply was 'it depends on what you call life'. That feels to me exactly the right thought in relation to Cerebral Palsy (CP) and disability. Is CP an illness, a disease, a condition, a handicap, an experience, a culture or merely a difference? I will argue that CP is a spectrum disability but that the complex neurological involvement of the vast majority of people under the age of 10 makes it a medical condition as much as a physical disability.

My premise is that the medical model has been discredited - or at least gone out of fashion - recently as it is based on an unacceptable assumption of a deficit and an abnormality. But this is to deny the reality. We should extend the concept many of us use in defining CP to incorporate - taking within the body, embedding in the concept - the medical aspects of the cause and solutions. That is the concept of disability that I will explore. This retains the social model of disability - that it is a condition that is affected by the external environment - access, attitudes and so on. But that we acknowledge that this is an inadequate response to difference, and the more significant medical aspects must be equally considered.

How do we talk about disability?

Terminology may not provide much useful guidance. A person can have CP, or can be a disabled person. Within the field of physical disability, many people seem to describe themselves using their medical condition. The majority of blind people would say they are blind, rather than they have blindness. With physical disability, for whatever practical, linguistic or psychological reason, many people say they have CP or multiple sclerosis or have a physical disability. While this seems to indicate an external cause for their disability, and one that is medical in origin, it does not seem strong enough evidence to suggest that they feel they are handicapped by a medical condition rather than by the response of society to their needs.

People who acquire a disability, including elderly people who lose their mobility and those connected with them, may not say they are physically disabled. They may want to use a term they recognise themselves, rather than a technically more accurate label that we want to impose. So for them, they have MS, or Parkinson's; they are content to describe themselves in terms of their medical disease, and many would say they are handicapped by the presence of that condition. Barnett (2002) researching people with deafblindness concluded that they described it as an experience rather than a culture, this distinction having a profound impact on their self-image and attitude to their condition.

But the main focus of this paper is the population of young people who have congenital impairments. We have known for around 15 years that this population contains more and more children with multi-impairments. Over that time we have used different concepts in thinking about disability.

What frameworks have we used around disability?

We really started with the medical model - CP children were those who could not walk and, often, could not talk. That worked for a short time. But most of the people had control over some movements; could communicate with familiar people; could improve their mobility with specialist appliances. Of course, the disabling effect of a small speech impairment was very significant in a person who was also severely physical impaired, as would be the impact of a minimal hearing impairment in a person with severe physical impairment whose movements were restricted as they attempted to locate the source of a sound they heard indistinctly. So it became impractical to simply describe a person in terms of the medical condition.

Instead we came to recognise the common ways any impairment would affect a person. We moved to a psycho-educational model and defined the restrictions created by a combined impairment in accessing, for example information, communication and mobility. This gave us a functional definition and helped to plan services, develop compensatory curricula, formulate research questions and define functionally equivalent behaviours to use in assessments.

The exact nature of the restrictions were closely examined, and staff were trained to understand them. Staff training became the most common request, and was seen as the answer to most problems. It wasn't, of course. It became clear that no one person could have all the skills and knowledge needed to cover this range. Another model - the social model - emerged to define the group. Sub-groups were created based on the staff skills needed and the adapted environment the people required. The social model put the emphasis on the learning and teaching environment that we should create, rather than on the disabled person. It was lack of an appropriate environment that created the handicap. The educational sub-groups were strongly influenced by the academic level of the children, rather than the degree of mobility or communicative development, and we recognised that a person who acquired a disability (perhaps through a degenerative condition or genetic cause) often needed a quite different educational package.

But those separate sub-groups were then examined and it was realised that some sub-groups should be only one child big. It was also realised that there are very complex medical conditions that cause the disability. At the same time, an increased understanding of neurology and genetics brought new information about the effect on behaviour of some of these conditions. This has left the existent concept as an inadequate basis for improving the situation.

Why are the existing models inadequate?

I suggest there are three reasons for this. Firstly the majority of people have complex disabilities. For example, some children may be deaf through an organic abnormality but others are not able to use auditory information because they have not learnt to associate the external stimuli (sounds) with anything meaningful. They have not learnt that they can hear. We now understand that they have difficulty synthesising information from their environments because of neurological abnormalities.

Secondly the social model is no longer adequate. That concept is based, in part, on the idea that the real barriers are social, are society. 'It focuses on the economic, environmental and cultural barriers encountered by people viewed by others as having some form of impairment' (Barnes, 2003) and I think that is too simplistic. That the main solution is to change attitudes and provide access to the external environment. Inclusion has shown the concept to be inadequate as well. Particularly with intellectual and communication disabilities, the standard classroom, the standard curriculum is not sufficient. We are coming to accept that these children need something different not even, simply, something additional.

An extension of the concept that the handicap is society, is that no person is disabled - each individual simply needs the appropriate environment to enable them to flourish, or, the opposite, that we are all disabled in some way. There is, I am told, an enormous popularity in self-diagnosis on the Internet particularly of autism and ADHD. It is almost fashionable now to say 'I am a bit autistic', and to do so proudly. But this social model marginalises severe disability. It denies the real differences and needs. It is, I argue, obvious that children with these complex medical conditions do not simply need access to the external environment. This approach also suggests that medical labels are deficit labels - and are real barriers to acceptance of the individual. But these children have fundamental medical needs that should be recognised. We should, as MacKay (2002) has put it, 'respect the complexity and accept that it cannot be fixed'.

I think this change in approach, in concept, is reflected in the change that WHO made in 2001 from their classification of impairment, handicap and disability, to the current ICF - classification of functioning, disability and health. This describes a way to measure health and emphasises the importance of healthy lives for those who have disability associated with health conditions. Their classification checklist includes areas of functions such as learning, mobility, relationships and access to services, and asks for judgements on activity limitations (due to the health condition) as well as participatory restrictions. And the definitions accept that people with disability are active participants in their lives, not the passive receivers of attitudes and support.

But the third, and main, reason why I advocate moving toward the concept of a new medical model is to take advantage of the current and future knowledge of genetics and neurology.

Research is going on in many places to establish if a particular genetic disorder or chromosomal problem leads to a particular package of behaviour. It is recognised that these abnormalities are associated with organ deformities, and with, for example, heart, motor, or visual problems. But it is encouraging to find evidence of connections with behaviour - and the descriptions of behavioural phenotypes. For example, it has been established that Down's syndrome is associated with people thought likely to be sociable and affectionate. We know that people with Fragile X syndrome show gaze avoidance. We suspect that Rubella results in repetitive stereotypical behaviour, difficulties in eating solid food (perhaps associated with the presence of the live virus) as well as abnormal walking patterns. Angelman's syndrome is associated with over-eating as well as a form of ataxia.

Neurologists can use imaging techniques to perform deep analysis of the brain as it functions. PET (positron emission tomography) has resulted in a better understanding of Parkinson's disease, for example. An alternative system, MRI (magnetic resonance imaging), can also be used to chart how the brain is organised. And this work leads both to a better understanding of how the brain controls movements, speech, how we feel and think, and to identify damage and abnormalities that can be assumed to lead to specific patterns of behaviour. Medical posts in Paediatric Neurodisability have emerged, to reflect the change in our knowledge.

What is a better model?

So the new - or at least revised - concept in disability, I suggest, should bring together the still relevant elements of the psycho-educational model (e.g. specialist services) and the social model (e.g. physical environment, attitudes) and add the genetics and neurology of the medical model. Partly because I am in an organisation that is, to some extent, family based, I will also put in the family model to remind us that a child is part of a family and that a family is part of the support circle around the child.

In practice, this means working with this medical information and having the medical staff as an integral part of the team. The concept requires changes in our own thinking - as educators or pedagogues - and in their thinking. How might that be achieved?

The answer, I think, is through adjusting the culture in the field, through attention to values, behavioural norms, heroes and heroines, training, history - classic elements of culture change. In practice, for us in a low incidence of field, I suggest there are 6 specific actions we can take.

What can we do to manage the change?

Find neurologists and geneticists. Parkinson's disease has done that. That is a sub-field which has embraced this concept. Work with those people, seek out their advice, involve them in assessment and, critically, involve them in questions about management and teaching. It is not simply to help us understand the medical condition; it is to engage them in management and teaching. In the field of physical disability we are more able to do this than in very many other branches of disability. We have a firm basis in our practical work with therapists and surgeons, and that is an advantage not shared, for example, in vision or hearing disabilities. Blind people are of little interest to ophthalmologists.

Study the development of children. Collect information about their behaviour and learning over a period of time. In a special school, it is possible to carry out a longitudinal study over 5 years to seek out links between approaches and behaviour, between medication and learning, the environment and change / progress. If we are astute in our observations and accurate in describing them, we have computers that enable us to record and collate this type of detail. That is the data that is needed to set up research studies. Sometimes that is all the information there is to create a theory or new approach to teaching.

Exchange information. Through networks and personal links we can pass on and receive information on how we teach, or what materials or approaches have been successful, or what challenges a child presents. That is how the deafblind field learnt about Rubella in the '50s and '60s; that is how much of the progress on understanding Conductive Education is still being made.

Adapt our training. Ensure that this new knowledge is included in training for people who are in the field. Finding a way of translating medical knowledge into accessible information - this is a job for university lecturers. Including articles in our journals that describe what is known and some of the ideas that are emerging.

Research the links. Find ways, and this is perhaps more relevant at an organisational level, to enable research to analyse links between genetic conditions or neurological impairments and behaviour and educational methodology. For an organisation, 'understanding Cerebral Palsy' could be a long term strategic priority. So this type of research might be included in part of that strategic aspiration.

Change the culture. Again this is relevant at the organisational level but it means identifying medical experts and celebrating their input with medals, awards, and keynote presentations at international conferences. It means ensuring our values include a respect for the relevance of medical knowledge and of their involvement. It means acknowledging people like William Little, Paul Greengard, and James Parkinson in our history.

Conclusion

In summing up, I suggest that we should embrace this change in the concept of the medical model and move towards putting the concept into practice within the field of physical disability. We need to accept the concept, to communicate it, and to implement it. This field, that we are all so passionate about, is complex. We must recognise the diversity but with a quest for unity, to better understand and serve the disabled people, and their families that are at the heart of our work.

References

• Barnes C (2003), What a difference a decade makes: reflections on doing "emancipatory" disability research, Disability & Society January 2003
• Barnett S (2002), Deafblind culture in the UK, DbI Review January - June 2002
• Mackay G (2002), The disappearance of disability? Thoughts on a changing culture, British Journal of Special Education December 2002
• WHO (2001), International classification of functioning, disability and health, World Health Organisation

Tony Best
Chief Executive Officer
Percy Hedley Foundation
April 2009

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