Even though it is often treated as one, disability is not a marginal phenomenon...
One child in ten has a disability, and the total number of children and adults with mild to severe disability due to physical, intellectual or sensory impairment, medical conditions or mental illness, is currently estimated at 580 million. Approximately 2/3 of these people live in developing countries.

People with disabilities encounter numerous forms of discrimination, which keep them on the outskirts of society. Stigmatising attitudes affect both individuals and their families. The social status of people with disabilities is almost inevitably lower than that of their non-disabled peers and in the eyes of many “able” people, the lives of disabled people are not worth living:

• Throughout the world, people with disabilities are frequently sent to segregated settings which isolate them from the community.
  
  
• Often deemed incapable of benefiting from schooling, many disabled children living in the community are barred from the classroom. Only 1-3% are enrolled in special schools; the vast majority get no education at all. This blocks their chances for quality jobs and social promotion.
  
  
• Fundamental civil and political rights are restricted if not absent: the right to vote, to marry, to bear witness in courts of law, to contract for business or property, to circulate freely from one country to another or to emigrate.
  
  
• People with disabilities also suffer from poverty. The US Census Bureau has reported that in 1997 only half of disabled Americans of working age were employed, compared to 78% of the non-disabled working population. The average earnings of disabled persons was 22% less that of non-disabled workers, and severely disabled workers (only 31% of whom had jobs) earned 38% less. In developing nations, this population is even more vulnerable but is chronically neglected by development programmes.
  

The excluded among the excluded

People with intellectual disabilities are difficult to count, because their impairment is not necessarily visible and because some social environments are more disabling than others. Nevertheless, their numbers are significant: 60 million today; 100 million in the years to come.
Regardless of the society involved, people with intellectual disabilities have a particular handicap: they are considered profoundly different from other human beings and often persecuted as a result.

For centuries, theirs has been the doubtful privilege of being among the first to be put aside by society: denied the right to family relationships, incarcerated in the 19th century asylums, chosen for the Nazi death camps, currently targeted for elimination due to prenatal genetic testing.
Many of those who survive live hidden in their parents’ homes, or are sent to large institutions.
Their access to gainful employment is particularly restricted: people with intellectual disabilities are even more likely to be denied their social, cultural, civil and political rights than are people with other forms of disability. Self-determination is strongly hampered if not muzzled. And if they protest such treatment, their behaviour is labelled “pathological”.

The objects of irrational fears, people with intellectual disabilities pay a very high price for intolerance. Yet the poor treatment they endure as a group is greeted by indifference.

The exclusion of those who care

In many instances, the responsibility for support and care for people with disabilities falls on their families, who provide this for free. The unacknowledged work performed by millions of informal caregivers keeps them, too, on the margins of society.

What are these pressures?

• Family care of a dependent infant or adult demands physical and emotional energy, which cannot be expended on other activities (employment, leisure, or even equal care for other members of the family).
  
  
• It also lasts a long time. In the past, care-giving careers lasted from 5 to 20 years. Today, care of a person with life-long intellectual disability, may last as long as 50-60 years. Elderly parents, long past the age of retirement, may find themselves devoting the equivalent of a part-time job, every day, to a dependent child who has reached middle-age.
  
  
• The need for family carers is growing since governments are looking to reduce formal supports. But throughout the world, the average household size is shrinking and families are splitting up, so the pool of potential care-givers is growing smaller.
  
  
• Family carers pay dearly for their commitment in restricted lifestyles (care-giving responsibilities keep them close to home for years) and in their public image (care-givers are often considered unskilled, unproductive and are prey to criticism both by professionals and by the public).
  
  
• Poverty is a real threat. A study by the UK Office of Populations Censuses and Surveys (1988) indicates that, despite disability allotments, British families of children with disabilities have available incomes, which are 22 percent lower than those of equivalent families in the general population.

Both parents find their opportunities for employment and promotion compromised. Women, in particular, find themselves reducing their jobs to part-time or abandoning them altogether, meaning loss of income leading to economic dependency on their spouse (who may, or may not, remain at their side) and significant difficulties in rejoining the job market later on.

At the moment of retirement, the years devoted to care-giving mean losses in pension credits or (in societies where parents count on their adult offspring for care during their twilight years) reduced circumstances because the disabled children, cannot support them in turn.

Thus disability generates poverty in both the individual, and in the disabled individual’s family circle.

Recently there have been major shifts in thinking on disability issues: gradual abandonment of the medical model in favour of environmental explanations for exclusion, and new thinking regarding the needs of people with disabilities (from charity-based responses towards a rights-based approach).

On the international level, the shift in philosophies is visible. Between the European Social Charter adopted in 1961 reflecting contemporary attitudes (people with disabilities are perceived as weak, requiring protection via separate facilities) and the UN Standard Rules (1993), followed by General Comment N° 5 (1994) by the Committee on Economic, Social and Cultural Rights, one can see the drive towards respect of the Human Rights of people with disabilities. But this intent appears ineffective because none of the international instruments referring pointedly to people with disabilities are binding. Other vulnerable populations however, such as women, refugees, and children are all protected by binding international Human Rights instruments.

Disabled Peoples’ Organizations do not understand why the UN is so reluctant to adopt a Convention acknowledging their particular condition, and the international debate is on:

• Can the Human Rights of people with disabilities be adequately defended using existing instruments, or will “implicit inclusion” signify their continued invisibility?
  
  
• Will a Convention provide greater protection, or will it be stigmatizing?

In the meantime, much can be done on the local and national level to improve the lives of people with disabilities, offering them equal opportunities for quality of life, and reducing the social exclusion which they have borne for so many years.

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Inclusion International, formerly known as the International League of Societies for Persons with Mental Handicap (ILSMH) is a network of 200 national and regional societies representing some 20,000 local organizations in 115 countries, all committed to defending the human rights of people with intellectual disability, and to supporting their families.

Nancy Breitenbach, CEO, Inclusion International, France.   © All rights reserved
Fax: 33+ 4 50 40 01 07. Email: info@inclusion-international.org. Web: www.inclusion-international.org