Interview

Volume 9 Issue 4 - May 01, 2012

“In the absence of comparable information, most of the policy planning for people with disabilities is based on assumptions,” Dr. Sruti Mohapatra

Dr. Sruti Mohapatra
Dr. Sruti Mohapatra

A recent study conducted by Swabhiman, an organisation working in Odisha has revealed some harrowing figures on the socio-economic and political condition of people with disabilities in the State. But what is even more worrying is the complete lack of awareness about laws, rights, services and other disability issues not only among people with disabilities but also among Government officials and the general public, compounded by a charity attitude and biased mindsets. Dr. Sruti Mohapatra, Founder and Chief Executive of Swabhiman talks to Dorodi Sharma of D.N.I.S. about the findings and some more.

D.N.I.S.: What motivated Swabhiman to undertake the survey on the socio-economic condition of people with disabilities in Odisha?

Dr. Sruti Mohapatra: In Odisha, in particular, and India in general, both awareness of and scientific information on disability issues are lacking. There is no agreement on defi¬nitions and little comparable information is available on the State wise incidence, distribution and trends of disability. There are very few documents providing a compilation and analysis of the policies and responses to address the needs of persons with disabilities in India. In Odisha only three documents exist, and all three are previous works of Swabhiman which focus on access, domestic violence against women with disabilities and an assessment of Sarva Shiksha Abhiyan (S.S.A.) in the State.

Most persons with disabilities do not have basic access to health care, edu¬cation, and employment opportunities. They do not receive disability-related services that they require, and experience exclusion from everyday life activities. Following the entry into force of the United Nations Convention on the Rights of Persons with Disabilities (C.R.P.D.), disability is increasingly being understood as a human rights issue. Development agencies and practitioners are increasingly recognising disability as a key issue, inexorably linked to poverty, in the extension of human rights and citizenship. But when it comes to policy planning or designing projects; most of it is being done based on assumptions.

This research work provides real, evidence based information on socio-economic and political status of persons with disabilities to forge a pathway for proper planning, inter-organisational / departmental partnership and evolution of new schemes for the empowerment of persons with disabilities. It will enable us to explore primarily where and how it makes most sense for public money to be utilised.

D.N.I.S.: What are some of the main findings of the survey?

Dr. Sruti Mohapatra: The common perception held by policy-makers and the public at large, is that people with disabilities and disability issues are to be viewed in terms of charity and welfare. Consequently, this viewpoint is a significant, entrenched factor that seriously militates against the social inclusion of people with disabilities within the country and Odisha also. This is demonstrated in the research findings in a number of ways.

First, despite the Disability Act being in existence since 1995, the awareness about the law is non-existent in the State (6 percent), both among persons with disabilities and their households; and Government functionaries. Secondly, the weak social protection network (a measly pension of Rs. 200 now increased to Rs. 300 per month) for persons with disabilities exacerbates the level of poverty that they encounter. Poverty has led to illiteracy, ill health and further social exclusion.

Thirdly, complete lack of access compounds exclusion. Out of 4265 public buildings and facilities audited, 69 percent were completely inaccessible with a lot of architectural and environmental barriers. Only 31 percent had some parameters of accessibility. There is no building or public facility which is truly ‘accessible.’ Fourth, positioning of disability in the Department of Women and Child Development has led to other Departments almost excluding disability in all their programmes.

Fifth, there are many N.G.O.s that do provide services to people with disabilities, but their geographical coverage is very limited and the quality of service is pathetic. As a consequence, for the vast majority of people with disabilities in Odisha, particularly for those living in rural areas, there is no access to any kind of disability services. Again, poor services compound the level of social exclusion that they experience.

Finally, though there has been a mushrooming of disabled people's network, they have little understanding of a rights-based agenda. There also exists a great deal of conflict between the N.G.O.s. that float and fund them which has a serious negative impact upon their ability to effectively lobby with the State Government to implement a rights-based agenda in disability issues.

D.N.I.S.: The survey reflects a very dismal picture of persons with disabilities in Odisha. What is your understanding of the reasons for this, despite the fact we got the Disability Act 15 years ago and the C.R.P.D. 4 years back?

Dr. Sruti Mohapatra: First of all, disability has been confined to one Department, the Department of Women and Child Development. When we filed Right to Information applications in the various Departments to find out the inclusion of disability in their organisational structure and activities vis-à-vis the 11th Five Year Plan, all Government Departments, except Health and School and Mass Education, forwarded our application to Women and Child Development, without a moment’s thought! This reflects voluminously on the bureaucrat’s attitude towards disability.

Second, awareness of existing schemes among persons with disabilities and their households is negligible. Only 6 percent are aware of the Disability Act of 1995, 1.8 percent of the National Trust Act, 0.9 percent of the Rehabilitation Council of India Act and 1.7 percent of the Mental Health Act. Only 48.8 percent possess disability certificates and 17.8 percent receive disability pension.

Third, disability certificate is the first step towards empowerment but barely 49 percent people with disabilities possess it. Moreover, disability certificates are marred with charges of forgery, non-availability of specialists, incorrect evaluation, rude behavior of doctors and the distance of the Government hospital at the district headquarters from most areas.

When we talk of aids and appliances which enable people with disabilities to reach that equal footing from where they can start performing, only 34.4 percent are aware of the free distribution of aids and appliances and of that only 18.6 percent are recipients. The three main challenges in receiving benefits and services include:

  • Physical access problems;
  • Problems with procedures and officials; and
  • Communication difficulties for people with disabilities in approaching providers.

Fundamental issues like awareness, possession of disability certificate and aids and appliances are basic needs which have to be met for people with disabilities to dream further like getting education and employment. When a person is not able to get herself/himself educated then what is the use of the 3 percent reservation in jobs for her/him?

The State needs to look into initiating action to functionalise people with disabilities by fulfilling basic needs like a disability certificate, aids and appliances etc. so that they can in turn perform to their optimum.

Government functionaries, even those directly providing services to persons with disabilities, have little knowledge of the Disability Act. So need I talk about C.R.P.D.?

D.N.I.S.: There are schemes and guidelines aplenty by the Government for persons with disabilities. Why do you think they are not able to have any impact whatsoever on the lives of people with disabilities?

Dr. Sruti Mohapatra: Schemes and guidelines cannot make an impact on the lives of persons with disabilities. The people manning the system can. Unfortunately, I find very little empathy or understanding of disability issues or of the philosophy behind the Disability Act, among Government functionaries. I will give you an example. A girl candidate wrote to us that despite the required percentage she was not being given admission in Government Homeopathy College. Then we received such complaints about other medical colleges too. The Directorate of Medical Education and Training (D.M.E.T.) initially disregarded the Disability Act altogether. It took a lot of advocacy from Swabhiman to finally get the circular passed that all Government, semi-Government and Government aided medical, para-medical, medical technician colleges should reserve 3 percent seats for candidates with disabilities. This, despite the fact that the Disability Act had been passed 7 years prior to these cases! Similarly, most Collectors and Department heads also are unaware of the Act and its provisions. 16 years since passage of the Act, schools do not have books in Braille, adaptations needed for children with disabilities, transport sector remains inaccessible and employers are reticent in employing us.

I also feel the need for an independent Department of Disability Affairs. Department of Women and Child Development already has a huge mandate. It is not that they are uninterested and avoid disability issues on purpose. In fact, we do have pro-active officers who are keen to create change. They have created a Directorate of Disability and placed a Director there. But this cannot bring in the massive change needed. An independent Department with a single mandate of disability can address the magnitude and varied issues that C.R.P.D. commands.

The other issue is of outdated schemes. When simple, labour-intensive tasks are eliminated and more opportunities are available for workers with adaptable, multiple, higher-level skills what use are the trainings in re-caning of chairs, chalk making, book binding etc. Similarly, students with visual impairment are being provided tape recorders. Neither are cassettes nor spares available. Instead of switching to digital voice recorders or mobile phones if the government continues with tape recorders – money is getting wasted on one hand and the students are not benefitted on the other.

N.G.O.s availing the various schemes are also not doing justice to the fund. 99 percent of N.G.O.s are there for their own sake and not for people with disabilities. The vocational training centres set up by N.G.O.s are not leading to any jobs. There needs to be a monitoring mechanism to stop funding such projects.

D.N.I.S.: Does the survey reveal any special bias towards persons with psychosocial, intellectual and developmental disabilities? If so, how do you think this can be tackled?

Dr. Sruti Mohapatra: Yes, it does. When our research team engaged with public to get their perception of disability and persons with disabilities, the responses were hair raising!

In terms of employment there was an unfortunate ‘NO’ by 46.8 percent of people. The 30.7 percent who agreed to employ people with disabilities had complete reluctance to accept persons with mental and developmental disabilities as employees. When asked if they would be comfortable with colleagues with disability 48.1 percent replied in affirmative but almost no one wanted to have colleagues with mental and developmental disabilities. Same was the case for schooling, marriage, sexual lives and having them as neighbours.

Awareness through films, television shows, real life stories on celluloid and role models are the only way of changing mind sets. At the same time disability appropriate education and skill training, employment in well-defined positions and encouragement of self-employment as tangible profit making ventures will supplement the awareness campaign.

I feel going to school together would be the best and least expensive mechanism to create an acceptance and appreciation of ‘diversity.’

D.N.I.S.: What were some of the recommendations that have come out of the survey?

Dr. Sruti Mohapatra: Recommendations are many but the one which sums of all needs is ‘setting up of a Department of Disability Affairs.’

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