Collecting information, collating it and disseminating it has always been a very important part of Alternative Strategies for The Handicapped, or ASTHA`s, agenda. I do believe that information has the power to change people`s lives. Normally, when either I or any other member of ASTHA gives information on any area, we make sure that it is relevant and enabling for the person we are sharing it with.
However, there has always been a slight unease in me when I am sharing information
on the disability certificate. In my mind I am not really convinced that the
information I am giving is enabling to the person I am giving it to. The reason
is that I am acutely aware that I am asking a person to start a process that
is likely to be...
...a very long one;
...a very unpredictable one since there is no uniformity of procedures and a total lack of information of how to go about getting this certificate even in a city like Delhi; and
...a dehumanising one, particularly for people who live in urban slums, resettlement colonies and who do not belong to the higher economic strata.
At the end of the road, the likelihood of the person giving up is very high and that has been my experience and the experience of the organisation I work in.
The sense of unease is greater because I am equally aware of the importance of the certificate and the power it carries. It is actually an extremely important document. It is the document that certifies disability. It has the power to place a person within the ambit of a group or keep him/her out of it.
The implications of this, in my view, are more profound than what appears on the surface. Some of the reasons for this are.
In the last eight years we have seen the enactment of two major laws: The Persons with Disability Equal Opportunity, Protection of Rights and Full Participation Act (PDA) and the National Trust Act for Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disability (NTA).
While the PDA is an act that ranges from the prevention of disability, through education, employment to areas such as non-discrimination and affirmative action, the NTA focusses on the needs of a specific group of people. One of the implications of these enactments is that there has been an official as well as countrywide recognition of the needs and rights of persons who are seen as having a disability. There is a recognition that their rights need to be stated. Along with this, there is now a growing and strong national rights based movement of persons with disability.
A large part of the PDA enjoins state governments to create schemes and opportunities for the exercise of the rights given in the ACT. For example, chapter 7 on Affirmative Action talks about state governments framing schemes for the preferential allotment of land at concessional rates for houses, setting up businesses, etc. Chapter 6 on Employment talks about a 3 per cent reservation of posts in government establishments. There are also already some schemes that are functioning, ranging from rail travel concessions to income tax exemptions, provision of aids and appliances, bus passes, etc.
With a growing national movement and a growing awareness of rights, there is a likelihood of an increasing integration of disability issues in other concerns and national plans of action. There is a likelihood of many more schemes being charted or disability concerns being included in existing schemes both at state and national levels. The recent moves towards inclusion are only going fuel this trend and this is how it should be.
However, at a very individual and operational level it is the disability certificate that seems to be the kingpin. Without this certificate, a person does not have access to any of these schemes or certain provisions of both the Acts.
Even for persons with mental retardation, autism, cerebral palsy and multiple disability (for whom there are not that many schemes) it is equally vital. One of the major provisions of the National Trust Act is the appointment of a guardian for persons who need it. The guardian is a person who legally takes decisions about the person and the property of another person for the rest of his or her life. Such a major decision that impacts the whole life of a person also needs the sanction of the disability certificate.
Such a vital document cannot be taken lightly. And it is because of this that questions such as who is getting the certificate, how one gets the certificate and how it is used become very important.
Who gets the certificate
All persons who are included under the PDA and the NTA should be entitled to a disability certificate. The PDA includes people with locomotor disability, blindness, low vision, hearing impairment, mental retardation, mental illness as well as people who are leprosy cured. The NTA works specifically for people with mental retardation, cerebral palsy, multiple disability and autism. While there is an overlap in the conditions included in both the Acts there are also differences.
The condition of cerebral palsy is included under the category of locomotor disability under the PDA. Under the NTA, however, it is an independent category. People with autism are not recognised under the PDA, but are an independent category under the NTA.
As a result, today there is no provision for issuing of certificates to persons with autism. Without a certificate, it is not possible to appoint a guardian for persons with autism. I focus on the provision of guardianship only since other than the schemes started under the NTA, autism does not seem to figure in any of the other schemes meant for persons with disability. Our conversations with people who work with children with autism reveal that many of them are getting the certificate under the category of mental retardation. Such a practice is not only technically wrong but it breaches the right of a person to be labelled correctly. If people are going to be labelled (and that too is a questionable practice), then they should be labelled correctly.
For persons with cerebral palsy too, the issue is of getting a certificate that states cerebral palsy rather than locomotor disability.
It seems to me that one of the most urgent issues to resolve is the very basic one of all people who are recognised by the law being able to access the certificate.
Amongst persons with disability who have already been able to access the certificate, it is children and persons with mental retardation and mental illness for whom it is hardest to access. This was reiterated again and again at a recent meeting organised by ASTHA on the issue of the disability certificate.
This was also amply clear when members of ASTHA spoke to hospitals in Delhi. Most hospitals were issuing certificates for persons with locomotor disability, vision and hearing impairments but did not have the requisite staff to certify people for mental disability. Even the recent camps that have been organised for issuing the certificate have not included mental disability .
The question that does need to be raised as far as children and people with mental retardation are concerned is: How they are being certified? Is an IQ rating enough to certify a person for life? Is a 30 to 40 minute test enough to understand the level at which a child or person is functioning? This is a question that has been raised in many fora and it is a question that we need to discuss. One suggestion that came out at the meeting was that detailed assessments from NGOs on prescribed formats could support the IQ or other testing that is done at the level of the hospital.
This question underscores a much larger question that also needs to be raised. How do we define disability? On the one hand, we are beginning to understand that a person is not disabled because of a loss of a limb or sight or sense of hearing. Disability is the outcome of the ways in which a society views a group of people and accommodates them. And yet, for one of the most important documents we continue to rate people on a very medical criteria.
This brings us to the question of procedure. The disability certificate as we all know can only be issued in government hospitals. These hospitals have to constitute medical boards that will finally certify the percentage of disability. A person is entitled to the certificate if he or she is found to have 40 per cent or more disability.
It has taken a PIL [Public Interest Litigation] in the High Court of Delhi as late as August 2002 for orders for medical authorities and boards to be constituted.
The very fact that the issuing of the certificate is set in a government hospital means that the issues of access to the medical system become extremely important. In the meeting organised by ASTHA, the experiences shared by members of NGOs, parent groups and others were very much the same. Some of these are set out below.
It takes at least three to four visits, spread over a few weeks to six months, for the whole process to be completed. The longer it takes, the more is the likelihood of a person dropping out of the process. The lack of information about what to do next is even more daunting. Our experience in ASTHA shows that unless we proactively inform and support families, many find it difficult to complete the process.
For children and people with multiple disability the process gets even more complex with the different departments to be visited and often a range of tests to be completed before the certificate is given. For a mother who has carried her 10-year-old, changing buses and then reaching a hospital; where finding your way around is difficult; where wheelchairs are not easily accessible, where toilets are not accessible, and there is very little space to sit - actually getting the certificate takes great courage and grit.
Very often we find that supporting documents, such as ration cards or birth certificates are not available with families. The question that needs to be raised is: Is whether the ration card is the only document that will suffice as proof of residence or are there any other options? Finally another question that needs to be asked is: Is there really a need to show the disability in the photographs? This is a requirement that many hospitals have. In my opinion once the process of certification is through there is no need for the photographs on the certificate to depict the medical condition the person has.
The very act of certification and of being labelled must be difficult for the person who is going through it. Therefore, along with equal opportunities, protection of rights and full participation there is a need to re-examine what is happening with this very basic document, the disability certificate.
(The author is the managing trustee and director of Alternative Strategies for The Handicapped)