The denial of equality, dignity and autonomy to persons with disabilities lies at the core of disability rights.
“Disability need not be an obstacle to success … It is my hope that … this century will mark a turning point for inclusion of people with disabilities in the lives of their societies.” — Professor Stephen Hawking, “Foreword,” World Report on Disability.
The inauguration of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2008 signalled the recognition of disability as a human rights issue. Research in different countries has demonstrated the ways in which disability is a development issue as well by mapping its bidirectional link to poverty. The World Health Organisation's World Report on Disability (WRD), prepared in response to a request of the World Health Assembly, affirms the work of disability rights advocates and attempts to fill the knowledge and information gap on disability.
The lack of a standard measure of disability across countries makes definition, comparisons and statistical estimates of the incidence a challenging task. Combining the 2010 population estimates and the 2004 disability prevalence estimates of the World Health Survey and Global Burden of Disease, the WRD estimates that there are over a billion people, i.e. 15 per cent of the world's population (including children), living with disability (p.29). The National Disability Policy of India estimated in 2006 that the disabled constitute 2.13 per cent of the country's population.
It is now widely understood that environment determines a person's experience of disability — either as a facilitator or barrier. But what do we mean by “environment?” The International Classification of Functioning, Disability and Health (ICF), which the WRD draws on, maps environmental factors ranging from technological and built environment to emotional and psycho-social environments that influence active participation. Importantly, this classification makes a distinction between capacity and actual performance, the gap between which could be indicative of the environmental barriers that need to be eliminated.
Accessibility is a concern that cuts across different domains of environment and must reach persons across disabilities. While it is widely acknowledged that accessibility standards are indispensable to inclusion and non-discrimination on grounds of disabilities, these have largely been left to the goodwill of the institutions — state and private. The WRD observes, “Laws with mandatory access standards are the most effective way to achieve accessibility” (page 175).
Disability audits of public and health care services, of existing and proposed policy and of institutions and organisations, have pointed to the practices of exclusion and indirect discrimination resulting from a lack of sensitivity to the needs of people with disabilities. A global survey in 2005 showed that of 114 countries, 37 had no training in place for rehabilitation professionals and 56 had not updated medical knowledge of health care providers on disability (WRD, page 110). Aggravating these barriers in the structural and systemic environment are mental barriers — negative stereotypes and stigmatisation — that question the right to choice, family life, adoption and such for persons with disabilities (page 6).
While there is a general tendency to homogenise disability and flatten out the diversity of condition and capability, disability is, in fact, stunningly diverse and encompasses the child with learning disabilities, the injured soldier and the elderly man with severely impaired mobility, not to speak of survivors of violence and the mentally ill.
The distinction between disability and ill-health is an important one. The WRD cites an Australian National Health Survey in which 40 per cent of people with severe or profound disability rated their health as good, very good or excellent (p. 8). Yet, unarguably, ensuring the prevention of health conditions that lead to disability is a development concern. The World Health Survey cited in the WRD draws attention to attitudinal, physical and systemic barriers that impede the access of the disabled to health care, drawing on the findings of research in Uttar Pradesh and Tamil Nadu that pointed to cost, lack of local services and transportation as being the top three obstacles to using health facilities (p. 62-63). The financing of health care, making it affordable and making medical equipment accessible to the disabled remain an urgent concern. The failure of service providers to communicate in appropriate formats or with sensitivity to the needs of the disabled care seekers might result, as it did in Zimbabwe, in the exclusion of the disabled from routine screening and counselling services (p. 72). Care coordination, in this context, is extremely important, and short-term increases in service delivery costs are compensated by efficiency and effective delivery in the long term.
The exposure of children to multiple risks, compounded by children screening positive for a high risk of disability being denied access to adequate childcare and nutrition, foregrounds the criticality of the family in providing care to children who are disabled and those facing increased risk. A 2005 study by UNICEF estimated 150 million children with disabilities. Data from specific countries also suggest a higher risk in children belonging to ethnic minorities (p. 36). There is a sizable enrolment gap between children with and without disabilities, with figures across Asia, Europe, Africa and South America showing higher enrolment rates for non-disabled children across age groups (page 207-208). School problems, the report found, revolved around curriculum, pedagogy, inadequate training of teachers, physical barriers, labelling, violence, bullying and abuse (p. 209).
The denial of equality, dignity and autonomy to persons with disabilities lies at the core of disability rights as human rights. An important finding of the WRD, and one that confirms our experience in India, is that persons with disabilities are at a greater risk of being targeted by violence. In the United States, the risk is 4-10 times more. Among the various forms of violence, sexual violence, especially against intellectually challenged persons who are in institutional care, is a major concern. The recent Chandigarh Administration case is an example. Even more serious are the legitimate incarceration of the mentally ill and the denial of fundamental rights under the Constitution. This treatment is echoed in the Disability Rights International report on the mentally ill in Paraguay, which documented life-threatening abuses and incarceration in dehumanising conditions (p. 146). In this regard, the Italian experience of deinstitutionalising the mentally ill and equipping general hospitals to care for mentally ill patients, thus integrating mental health care with general health care, merits special mention. Although the coverage is far from adequate, the enactment of legislation and the drawing up of concrete plans of action supported by budgetary allocations and inter-sectoral professional services show the way forward (p. 106). This trend towards deinstitutionalising has also been followed in some countries in Eastern Europe, notably Romania.
Article 12 of the UNCRPD places an obligation on governments to put in place adequate mechanisms for effective, supported decision-making by persons with disabilities, ensuring thereby that they do not lose legal capacity on grounds of disability. The WRD finds large gaps in meeting support needs across the world — China, for instance, reported a shortage of personnel; and 30 countries (including Iraq, Madagascar, Mexico, Sudan, Thailand, and the United Republic of Tanzania) reported having fewer than 20 sign language interpreters (p. 140). The Disabled Children's Action Group set up by parents of children with disabilities to address the needs of children from black and coloured communities in South Africa in 1993 is an example of how a mutual support group can actually change the contexts in which children grow up (p. 143).
This report is particularly relevant for us in India at a time when we are witnessing a concerted effort to put an effective and comprehensive national law in place.
(Kalpana Kannabiran is Director, Council for Social Development, Hyderabad.)