By Dr. Didi Tarsidi
Indonesia University of Education (UPI)
President, Pertuni (Indonesian Blind Union)
DEFINITION OF DISABILITY
The 2006 UN Convention on the Rights of Persons with Disabilities states that “…disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”.
This is obviously made in line with the International Classification of Functioning, Disability and Health (ICF) that defines functioning and disability as multi-dimensional concepts, relating to:
• the body functions and structures of people
• the activities people do and the life areas in which they participate
• the factors in their environment which affect these experiences.
By being so defined, the ICF puts the notions of ‘health’ and ‘disability’ in a new light. It acknowledges that every human being can experience a decrement in health and thereby experience some degree of disability. Disability is not something that only happens to a minority of humanity. The ICF thus ‘mainstreams’ the experience of disability and recognises it as a universal human experience. By shifting the focus from cause to impact, it places all health conditions on an equal footing allowing them to be compared using a common metric – the ruler of health and disability. Furthermore ICF takes into account the social aspects of disability and does not see disability only as a ‘medical’ or ‘biological’ dysfunction. By including Contextual Factors, in which environmental factors are listed, ICF allows to records the impact of the environment on the person’s functioning.
THE GLOBAL SITUATION OF PERSONS WITH DISABILITIES
The UN Web Services Section, Department of Public Information (United Nations, 2006) reveals the following facts about persons with disabilities in the world.
• Around 10 per cent of the world’s population, or 650 million people, live with a disability. They are the world’s largest minority.
• This figure is increasing through population growth, medical advances and the ageing process.
• In countries with life expectancies over 70 years, individuals spend on average about 8 years, or 11.5 per cent of their life span, living with disabilities.
• Eighty per cent of persons with disabilities live in developing countries.
• Disability rates are significantly higher among groups with lower educational attainment in the countries of the Organisation for Economic Co-operation and Development (OECD). On average, 19 per cent of less educated people have disabilities, compared to 11 per cent among the better educated.
• In most OECD countries, women report higher incidents of disability than men.
• The World Bank estimates that 20 per cent of the world’s poorest people are disabled, and tend to be regarded in their own communities as the most disadvantaged.
• Women with disabilities are recognized to be multiply disadvantaged, experiencing exclusion on account of their gender and their disability.
• Women and girls with disabilities are particularly vulnerable to abuse.
• According to UNICEF, 30 per cent of street youths are disabled.
• Mortality for children with disabilities may be as high as 80 per cent in countries where under-five mortality as a whole has decreased below 20 per cent.
• Comparative studies on disability legislation shows that only 45 countries have anti-discrimination and other disability-specific laws.
• Ninety per cent of children with disabilities in developing countries do not attend school.
• The global literacy rate for adults with disabilities is as low as 3 per cent, and 1 per cent for women with disabilities, according to a 1998 UNDP study.
• In the OECD countries, students with disabilities in higher education remain under-represented, although their numbers are on the increase.
• An estimated 386 million of the world’s working-age people are disabled. Unemployment among the disabled is as high as 80 per cent in some countries. Often employers assume that persons with disabilities are unable to work.
• Companies report that employees with disabilities have better retention rates, reducing the high cost of turnover. After one year of employment, the retention rate of persons with disabilities is 85 per cent.
• Thousands of people with disabilities have been successful as small business owners. The 1990 national census revealed that people with disabilities have a higher rate of self-employment and small business experience (12.2 per cent) than people without disabilities (7.8 per cent).
• For every child killed in warfare, three are injured and permanently disabled.
• In some countries, up to a quarter of disabilities result from injuries and violence.
• Persons with disabilities are more likely to be victims of violence or rape, according to a 2004 British study, and less likely to obtain police intervention, legal protection or preventive care.
• Research indicates that violence against children with disabilities occurs at annual rates at least 1.7 times greater than for their non-disabled peers.
The underlying cause of the facts above is presumably the fact that the majority of persons with disabilities are under-empowered. Defined according to Omvig’s model, a person with disability is said to be empowered when he or she is capable of emotional adjustment, mastering the alternative techniques, is able to cope calmly with the misconceptions of others and is able to blend into the broader society — which are essential to enable him or her truly to take control of his or her life and to become the best that he or she is capable of becoming.
As “disability results from the interaction between persons with impairments and attitudinal and environmental barriers, eliminating these barriers is naturally instrumental in empowering persons with disabilities
THE ROLE OF ORGANIZATION OF PERSONS WITH DISABILITIES
History has taught us again and again that organized movements, including disability movements, are effective in bringing about social change, including combatting against attitudinal and environmental barriers. By definition, an organization of persons with disabilities is one that is representative of the persons with disabilities of a certain societal viscinity (national, regional or local), having a substantial number of members with a majority of its membership consisting of persons with disabilities, having a governing body with a majority of persons with disabilities, elected by the members at regular intervals.
The Standard Rules on the Equalization of Opportunities for Persons with Disabilities, adopted by the United Nations 1993 General Assembly, Resolution 48/96, mandate States to recognize the right of the organizations of persons with disabilities to represent persons with disabilities at national, regional and local levels. States should also recognize the advisory role of organizations of persons with disabilities in decision-making on disability matters. Furthermore, States should encourage and support economically and in other ways the formation and strengthening of organizations of persons with disabilities, family members and/or advocates. States should recognize that those organizations have a role to play in the development of disability policy, and States should establish ongoing communication with organizations of persons with disabilities and ensure their participation in the development of government policies. (Rule 18).
As instruments of self-empowerment, organizations of persons with disabilities provide and promote opportunities for the development of skills in various fields, mutual support among members, and information sharing.
In a wider scope, the role of organizations of persons with disabilities is to identify needs and priorities, to participate in the planning, implementation and evaluation of services and measures concerning the lives of persons with disabilities, and to contribute to public awareness and to advocate change. Among the priority areas of their concerns (as identified by the Standard Rules) are accessibility, education, employment, recreation and sports, and religion.
The Standard Rules on the Equalization of Opportunities for Persons with Disabilities stipulates consultative and/or advisory roles for organizations of persons with disabilities in these priority areas:
• Organizations of persons with disabilities should be consulted when standards and norms for accessibility are being developed. They should also be involved locally from the initial planning stage when public construction projects are being designed, thus ensuring maximum accessibility. (Rule 5).
• Parent groups and organizations of persons with disabilities should be involved in the education process at all levels. (Rule 6).
• States, workers’ organizations and employers should cooperate with organizations of persons with disabilities concerning all measures to create training and employment opportunities, including flexible hours, part-time work, job-sharing, self-employment and attendant care for persons with disabilities. (Rule 7).
• Organizers of sports and recreation should consult with organizations of persons with disabilities when developing their services for persons with disabilities. (Rule 11).
• States and/or religious organizations should consult with organizations of persons with disabilities when developing measures for equal participation in religious activities. (Rule 12).
These participatory rules are in line with the disability movement slogan, “Nothing about Us Without Us”. The slogan relies on the principle of participation, and it has been made popular with Disabled Peoples Organizations since the turn of the 21st century as part of the global movement to achieve the full participation and equalization of opportunities for, by and with persons with disabilities.
The active involvement of persons with disabilities in the elaboration of the convention on the rights of persons with disabilities has proved to be an excellent example of how the principle of full participation can be put into practice and how it can contribute to the development of truly inclusive societies, in which all voices are heard and persons with disabilities can help shape a better world for all. The CRPD is believed, when fully implemented, can help accelerate the efforts to empower persons with disabilities, and organizations of persons with disabilities have a major role in these efforts.