DISABLED PEOPLE AND HEALTH
An article for the alternative health report, “Global Health Watch” 2005-2006
In the context of global health, disability must first be defined as disabled people experience it.
Then, with a shared understanding of the disability dimension, we can look at how disabled people are or are not being supported within positive agendas for health, well-being and rights and how they themselves are taking control over their own lives, changing their environments and demanding their right to full participation as human beings and equality in freedom and dignity.
Way back in 1985, WHO set the following targets for Global Health to be achieved by 2000 for disabled people: “that disabled people should have the physical and economic opportunities that allow at least for a socially and economically fulfilling and mentally creative life.”
They went on to say that this could be achieved if “societies developed positive attitudes towards disabled people and set up programmes aimed at providing appropriate physical, social and economic opportunities for them to develop their capacities to lead a healthy life.” (WHO, 1985)
This report also said that, despite some efforts in the areas of rehabilitation and prevention, disabled people were still being denied inclusion in their communities, they were denied self-determination and not enough steps were being taken to eliminate the barriers to full participation.
Some progress has been made since 1985, but according to a report from the UN Human Rights Commission, on the current use and future potential of UN human rights instruments, in the context of disability: “A long overdue and imperfect reform process is underway through out the world…However, that process is slow and uneven, in some places almost non-existent.” (Quinn & Degener, 2003,).
The reason progress is so slow and health and well being systematically denied disabled people has mainly been rooted in the definition of disability itself. Traditionally disabled people have been seen as people who are impaired, functionally limited, unable to do things.
It was believed that the duty of society was to change the impaired individual to conform to the community – either through cure, treatment or rehabilitation. Disabled people were the commodity of health professionals – and as such a source of power and resources for the professionals – not people in their own right, with the same rights to life, participation and personal autonomy.
It also meant that problems that arose around disability could be solved by exclusion within special institutions, by community-based service provision that emphasised the disabled person as recipients of care and special treatment or simply by neglect because their needs were deemed to be too expensive and unsustainable.
To put it bluntly – for a developing country to provide resources to support disabled people in their communities would be socially unproductive and unsustainable and for the developed world (which did not have the excuse of lack of resources) the best solutions were to exclude disabled people from the mainstream and to build hierarchical, urban-based systems and services that ensured that expenditure went mainly to the professionals operating those services and systems and only a small fraction to the individual.
This medical attitude and definition of disability was confirmed by the International Classification of Impairment, Disability and Handicap (ICIDH) which was formulated in 1980 by the WHO to find common ground for the results of disease (as classified under International Classification of Disease) to enable better planning of services and provision of treatment and rehabilitation.
The experts brought together by the WHO to formulate this classification inevitably used a causal, linear approach, with its roots in disease and impairment and the outcomes in a person’s inability to participate like everyone else in society.
No member of the disability rights movement was a member of this expert group. That disabled people had rights, including the right to a voice in policies and programmes that directly affected us, was not seen as an issue at all in 1980.
However, by that time, throughout the world, disabled leaders had arrived at a clear and shared analysis of the real situation of disabled people and a definition of disability.
They recognised that all environmental impacts: services, systems, the personal context and environment, all contributed to the disabling barriers to the full and equal participation of disabled people into their societies and communities.
They had formulated the ‘social model’ of disability and recognised that it was not the individual that had to change but society that had to radically alter through systems, services and attitudes, to include disabled people.
This understanding of the social model of disability and the right to protection against exclusion and degrading and inhuman treatment were the catalysts in building a coherent and democratic movement of disabled people.
A movement to ensure that the democratic and accountable voice of disabled people could be heard in political debate and that future systems and services would mainstream disabled people and acknowledge us as fully human.
Disabled Peoples’ International (DPI) was formed in 1981 as that international voice of disabled people worldwide and has always included all disabled people, regardless of impairment.
From the moment of its inception, the forty-four countries originally involved agreed the fundamental principle that all people are equal - and that includes disabled people.
The principle of equality implies that the needs of each and every individual are of equal importance, that these needs must be made the basis for the planning of our societies and that all available resources must be employed in such a way as to ensure equal participation for each and every individual. Policies of concern to disabled people, therefore, very often involve the distribution of resources in society and as such are political issues. (DPI, 1981)
One of the first steps DPI took was to apply for consultative status to the United Nations and to have a substantive input into the UN World Programme of Action Concerning Disabled Persons, which was agreed by all member states at the General Assembly of 1993 as the recommendations to support the Decade of Disabled Persons (1993-1992) and to implement the full and equal participation of disabled people in society.
This World Programme of Action became a very important lobbying tool for all disabled people’s organisations and was then further elaborated by the UN Standard Rules on the Equalisation of Opportunities of People with Disabilities to mark the end of the Decade in 1992.
And today, as a result of further lobbying of member states and the UN by a much wider and stronger body of international disability NGOs, the process of elaborating a Convention on the rights of disabled people has begun.
Another important step for DPI was to call for revision of the ICIDH to reflect the social definition of disability. Using the argument that WHO saw health as a human rights issue, DPI argued that disability was also a human rights issue and therefore it could no longer be seen as part of the continuum of disease and incapacity.
The WHO took rather a long time responding to the pressure for revision, but eventually started the process in the early 1990s and the final new International Classification of Functioning, Disability and Health (ICF) was agreed by the WHO General Assembly in 2001.
DPI and other disability activists had a clear role in the revision process - despite our wish to do away with a classification altogether because no other group of individuals who face discrimination and social exclusion have been subjected to this sort of analysis of individual characteristic.
Women and indigenous people (for instance) have only been analysed in relation to their social, cultural and economic status. An in-depth classification of their individual characteristics has never been seen as necessary to evaluate how people should respond to their status – or their diseases.
It is not necessary to analyse the effects, pain and suffering of menstruation, the menarche, birth or sexuality on the individual woman in order to quantify or qualify her status as a human being – or even to analyse the consequences of disease.
The WHO got over these concerns by saying that the ICF related to all people, that the classification was no longer consequential but a description of components of health and that the list of environmental factors (including systems, services, policies and attitudes) described the context in which individuals live. (WHO, 2001)
WHO could only see the social model definition of disability as a political tool of the disability rights movement and therefore felt that their definition was the ‘interactive’ model – describing the interaction between the person and their total environment.
Including the environmental factors in all dimensions of the classification should lead to more accurate statistical evidence on disability rights and assessments for services based on the need to fully participate and not just to conform to what is available or what will just about sustain life.
I say ‘should’ advisedly. Old habits die hard, and there is little evidence that statutory authorities and the professionals are making the changes required.
The environmental factors will also highlight the disabling effects of poverty, malnutrition, lack of micro-nutrients, poor sanitation, lack of immunisation and show that improved nutrition, food security, access to health care, education, clean water, sanitation and immunisation empower people, as does access to transport systems, safer working and living environments.
WHO also considers that their family of classifications (the International Classification of Disease – 10 and the ICF) provide a useful tool to describe and compare the health of populations in the international context, going beyond the traditional methods of using infant and maternal mortality.
Unfortunately there is little indication that this is happening. There are other pressures from the supporters of QALYs (Quality Adjusted Life Years) and DALYs (Disability Adjusted Life Year) that these relatively similar systems give a better idea of a countries use of its resources and whether or not a health intervention provides good value for money.
Unfortunately, the resulting tables seem to suggest that the number of disabled people a country has, the lower its status. Whilst mortality rates send out messages that it is the lack of health care, poverty, malnutrition etc. that causes high mortality rates, disability adjusted evidence infers that it is the disabled people themselves that are the problem.
Again – we are only seen as our impairments, not as people facing discrimination and exclusion with important contributions to make to our communities.
As a 35 year-old man from the Congo said in his testimony to the United Nations to encourage the elaboration of a convention on the rights of disabled persons:
I am 35 years old now and have never tasted all these facilities I am reading in the Standard Rules. They are a dream! We don’t have any rights other that the right of receiving pity words, which we don’t need!
We cannot make any change to our rights when we are still in dust asking for cents in the streets, but by improving ourselves through education. There is no encouragement from the government or society. (DAA, 2000)
As this man says - and many others – you cannot eat rights, nor do international policies and programmes seem relevant at the personal level.
For the disabled person at the grass roots – whether in a rural area of a developing country or in a city such as London or New York – the reality of their everyday lives is still a constant battle against exclusion, discrimination, poverty and, often, outright hostility and abuse.
We, disabled people, have learnt over the years that the only way out of this situation is to take control of our own lives, come together and gain strength in unity.
As Joshua Malinga, subsequently twice President of DPI, said at that first DPI Congress:
In 1970 I and my fellow disabled Zimbabweans gathered together to try and find out why the disabled were not themselves involved in their own affairs.
We finally came up with the idea of forming an organisation of disabled persons to fight for our rights as human beings who should have access to all community services.
Our basic philosophy was nothing other than that we, disabled people, are citizens with rights and obligations to society. (DPI, 1981)
Disabled Zimbabweans were in the forefront of local disability rights activism, and the sharing of their experience with others in the DPI family has resulted in a growth of national membership to DPI to over 140 countries and a mass movement of local, sub-regional and regional organisations controlled and run by disabled people (an essential criteria for membership of DPI) and an impetus for single impairment organisations to join in the united struggle for human rights for all.
Increasingly, these organisations are realising that, to ensure sustainability, social change based on equality and rights is just as important, if not more so, as fulfilling the needs of the individual.
A disabled person may be given the tools to run his own small business – but unless the community in which he works accepts him as an equal or the bank gives him a small loan on the same basis as non-disabled entrepreneurs, he will not be able to operate.
There is no point in providing a hearing aid if the battery cannot be renewed or charged locally. There is no point in governments announcing ‘free education for all’ if this does not include disabled children. And it is disabled people, using their own experience to stimulate their strategies and actions that have come up with some fine solutions to ensure their rights to equality and participation.