Who are persons with disability?
For almost two decades now World Day of the Disabled is celebrated on December 3rd. The day, like other such special days – World Environment Day, or Women’s Day or Children’s Day or Mental Health Day…. passes us by with token sports meets, rallies, get togethers or other such programmes followed by speeches, lunch, certificates, distribution of blankets, prizes…we pat (pun unintentional Editor!) ourselves on the back, get media coverage and there the issue rests till the next year!!
I take the opportunity of the approaching World Day of the Disabled 2013 to share some thoughts (for whatever they are worth!) and in the words of the inimitable Khushwant Singh , “With Malice Towards One And All”! including myself!
Some years ago, the present Chief Commissioner of Persons with Disability – Mr. Prasanna Pincha (who is blind, located in Delhi and his role is to be a watchdog for implementation of the Persons with Disability Act 1995) was Chief Guest at the celebration of World Day of the Disabled in Shillong. The Guest of Honor in a sincere effort to be sensitive, referred to the audience as the “differently abled”. When Mr. Pincha stood up to speak he requested the Guest of Honour to please explain how he was “differently abled”. Did he walk on his hands, was he able to walk on the ceiling and look down at people, did he eat in a different way, did he have some special sixth sense since he did not have sight ……? Are not each of us unique individuals he opined and consequently differently abled? He finally declared that he was a person who happens to be blind! Nothing more, nothing less and no one needed to feel pity and give him a handout!!
How does one address this group of persons without being patronizing, insensitive or even a little embarrassed? In a cartoon that sums up this dilemma, a lady asks a person in a wheel chair, ” How do I address you…handicapped, disabled, special, physically challenged, vertically challenged…and the reply from the person on the wheelchair was ” how about Joe!”. To lay to rest this whole debate , the reference point should be the first human rights treaty of the 21st century – the United Nations Convention on the Rights of Persons with Disability (UNCRPD). This Convention brought together all the international understanding and wisdom of the past century on the issue, heated debates and arguments and finally consensus. The drafting Committee had representation from persons with disability from across the world and across disabilities. It was placed for signing for the members of the UN in March 2007. The only other convention, in history, which had more signatures from Member States on the very first day was the Convention on the Rights of the Child. (CRC) . India was one of the first countries in the world to both sign and ratify the UNCRPD.
When a country ‘signs’ the Convention it means it agrees with what the Convention says about human rights for persons with disabilities. When a country ‘ratifies’ the Convention it agrees to do what the Convention says and make changes to ensure that the rights in the Convention are respected in practice. A country ratifying the UNCRPD is legally bound to uphold any of the international human rights treaties affecting persons with disabilities. It has to report to the UN CRPD Expert Committee two years after ratification, and then every four years.
This is how the UNCRPD defines DISABILITY AND PERSONS WITH DISABILITIES? “Disability”: -” ..disability is an evolving concept and 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”.
“Persons with disab-ilities” – Article 1 states that “persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”.
The universally accepted term, endorsed by the major stakeholders, is persons with disabilities!(PWDs). I appeal to all to banish terms such as “retarded, handicapped, special and so on” from their vocabulary when referring to persons.
It is worth reflecting on some of the essentials of these two definitions. I’m often asked, “Why focus on the ne-gative…disability?” That is precisely the point! The CRPD stresses that disability is caused by barriers that prevent participation on an equal basis with others. If persons who have challenges in seeing, moving, hearing, speaking, thinking, coping…..can participate on an equal (not same or uniform ) basis with others, the disability is greatly reduced. Disability is not in people, it is in the environment and attitudes. There will always be impairment, there will always be children with special/different needs but we can dream of a world where there is no disability. It is no wonder the UNCRPD states that disability is an “evolving concept.”
The other important point to consider is that people with impairment do not demand anything extra, but “participation on an equal basis with others.” How many people using wheelchairs or having a problem walking or seeing ( this includes the elderly or pregnant women) can move around the streets of Shillong or shop in the malls or enjoy KFC or shop in RAPs or buy fish or pork or vegetables in the local markets, or get into the spanking new JNRUUM buses on an “equal basis with others.” The concept of universal design is the need of the hour when one speaks of accessibility. PWDs and their families also have money to spend, so it makes bad business sense to exclude!!
This also implies that we as a society celebrate differences and as the UNCRPD states, use “reasonable accom-modation.” ( necessary and appropriate modification and adjustments). At a recent function organized by the Government of Meghalaya for distribution of Tablets to class XII students, young persons with speech and hearing impairment and visual impairment were denied this wonderful gesture, even though, inspite of all barriers and through sheer dint of hardwork they had managed to reach Class XII. The reason was that they were not from a recognized school. The Tablets would have been a boon for them. The hearing and speech impaired would have had visual material and the visually impaired could have accessed the information in audio through the use of appropriate software. There was no attempt at “reasonable accom-modation” or participation “on an equal basis with others.” You either fitted into the pre-determined criteria or lost the opportunity. It only resulted in increasing the degree of disability and an opportunity for them to perform better in the ensuing Class XII Board Examination. They felt terribly excluded!
For a young child who has a problem in finger dexterity, or a problem in seeing, or a problem with speaking or hearing or understanding “equal basis with others” would mean studying with children who do not have such challenges, but being able to access information in a different way and also the opportunity to be evaluated in a different way. Such a system would truly celebrate diversity! The answer is not necessarily segregation into special schools for the “differently abled.”
In 2011 the WHO and the World Bank released “THE WORLD REPORT ON DISABILITY” (WRD) , one of the most comprehensive studies done on the subject. It stated that across the world over 10% of the population were persons with disability. The WRD also stated that there was no way the Millenium Development Goals (MDGs) could be achieved, if persons with impairments were excluded from mainstream development programmmes and thus the WRD slogan “BREAK TO INCLUDE!” It is an urgent call to Governments and societies, across the world, to embrace INCLUSION and challenge systems which are organised to meet the needs of the non-disabled majority!
As if to further emphasize the fact that persons with impairments continue to be excluded, the UNESCAP in 2012 declared 2013-2022 the Asia Pacific Decade of the Disabled with all the countries, including India, signing what is known as the Incheon Strategy TO MAKE THE RIGHT REAL!
To be fair – Meghalaya is one of the pro-active states in promoting the cause of PWDs, however it is far from adequate. Moving from a charity model of interventions to a breaking barriers approach calls for serious systemic changes. But all evidence points to the fact that a society that is good for PWDs is a society that is good for ALL!
On World Disabled Day 2013, can we in Meghalaya identify and break ONE BARRIER that prevents persons with impairment from participating on an equal basis with others and thus reduce disability and then we should celebrate!
Mr. Carmo Noronha can be reached at [email protected]