Lack of disability data a significant deterrent in India’s push for achieving Sustainable Development Goals
Satendra Singh, MD
Coordinator, Enabling Unit (for persons with disabilities)
Infinite Ability (Medical Humanities subgroup on disability)
University College of Medical Sciences & GTB Hospital, Delhi, India
(This post first appeared on the Delivery 2030 website)
“I am pleased that elimination of poverty in all forms everywhere is at the top of our goals. Addressing the needs of 1.3 billion poor people in the world is not merely a question of their survival and dignity or our moral responsibility. It is a vital necessity for ensuring peaceful, sustainable and just world.”
- Prime Minister of India’s address at the United Nations Sustainable Development Summit1
According to the World report on disability, around 15% of the world's population, or an estimated one billion people, live with some form of disability.2This makes us,the people with disabilities, the world’s largest minority.This number is increasing with chronic diseases, population growth, and the ageing process. It is also reported that 80% of people with disabilities worldwide live in developing countries and 60-75% of these live in rural areas.3Thevicious circle between poverty and disability is known to everyone.
India was one of the first major countries to ratify the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2007.4It thus becomes incumbent on India to harmonise all its relevant domestic laws and policies with this international treaty.UNCRPD also requires states to generate robust data in order to demonstrate their compliance with the obligations. Article 35 of the UNCRPD mandates nations to submit country reports on its effective implementation.
It took India 8 years to submit its first country report on UNCRPD implementation, which became public in November 2015 on the website of the United Nation’s Office of the High Commissioner for Human Rights.5The comprehensive report sadly lacks data to supplement the claims of the Government.
Disability data is essential to provide services, monitor the implementation, and equalise opportunities. How crucial it is can be gauged by looking at the census data. The latest 2011 census figures have shown only a marginal increase in the number of people with disabilities in India with the figure rising from 21.9 million (2.1% of population) in 2001 to 26.8 million (2.2% of population) in 10 years.6 This census data, however, has been widely criticised for being under-reported. Widespread criticism followed the use of direct question, ‘Is the person mentally/physically disabled’, in the census survey.5 In India, especially rural areas, disability is a big taboo and the use of such direct questions has possibly lead to under reporting.
Globally, the Washington Group of questions is used for authentic measurement of disability in surveys. The Telangana Disability Study Group7 of International Centre for Evidence in Disability, London, who used Washington Group questions, found the overall prevalence of disability in Telangana state of India to be 12.2%. This estimate is much higher than predicted in the Indian Census 2011, and justifies concerns of the disability sector. India does not feature in the list of countries/territories which have included Washington Group questions in their last census as per the website of UN Statistics Division and Secretariat for the Convention on the Rights of Persons with Disabilities.
As a health care professional with disability, and after being inspired by Prime Minister Narendra Modi’s inspiring speech at the UN General Assembly, I decided to search for evidence ofdisability data in our preparedness for post 2015 (now deliver 2030) agenda. I used the list of disability indicators – developed by the United Nations, International Disability Alliance and International Disability and Development Consortium8– and filed Right to Information (RTI) to gather data from our nodal Ministry on disability9 and National Statistical Agency.10 These indicators intend to measure the progress made for persons with disabilities in the implementation of the Sustainable Development Goals (SDGs).
Will SDGs serve the purpose?
To give an example, targets 4.a, 11.2 and 11.7 refer to accessibility by persons with disabilities and suggested ISO standards refer to building codes. At present, there are no common standards. The Draft National Building Code (NBC) of India is being revised after a decade but strangely the NBC exempted 14 places from having toilets for disabled.11 These public spaces include office buildings, cinemas, convention halls, theatres, art galleries, libraries, museums, hotels, restaurants, schools and educational institutions. Moreover, the Ministry of Urban Development has different guidelines. With the Accessible India Campaign being implemented by Centre on mission mode, the disability sector is in a dilemma as to which guidelines to follow.
SDG indicator 10.2 outlines the percentage of government websites which meet the ISO/IEC 40500:2012 of accessibility for Web content. Despite international guidelines being available, the majority of the websites of medical institutions and hospitals in the capital are disabled-unfriendly. For this basic health need, Ihad to file a petition in the Court of State Commissioner (Disabilities) of Government of Delhi to make all the websites of these hospitals accessible.12Following this, on the first day of the deliver2030 agenda, the websites of Delhi hospitals with accessible features were made live. We need this commitment in all the States/UT and certainly not through judicial activism. This is why these indicators must be included in the national framework.
The current scenario
There is no data as per the nodal Ministry on SDG indicators on disability9 despite India ratifying UNCRPD in 2007 and adopting the Incheon Strategy13 to “Make the Right Real” for Persons with Disabilities in Asia and the Pacific in 2012. The table shows disability indicators for SDGs and the response from Ministry of Social Justice and Empowerment. The last column also shows goals of Incheon strategy indicators adopted by India which overlap with SDGs to a large extent. The Strategy comprises 10 disability-inclusive developmental goals, 27 targets and 62 indicators, which build on UNCRPD.
There too was no clear response from the Ministry of Statistics &Programme Implementation on the same questions.9The RTI was forwarded to other ministries and departments like Vital Statistics Divison (Ministry of Home Affairs), Office of the Registrar General (Ministry of Home Affairs), Department of School Education and Literacy (Ministry of Human Resource Development), Ministry of Road Transport and Highways, and Ministry of Health and Family Welfare. The situation calls for deep reflection as we are in the Asian and Pacific Decade of Persons with Disabilities (2013-2022) as declared by the United Nations Economic and Social Commission for Asia and the Pacific.
The Government has launched the Accessible India Campaign (Sugamya Bharat Abhiyan), as a nation-wide flagship campaign for achieving universal accessibility for persons with disabilities. The targets 3A, 3B and 3C of the Incheon Strategy and the defined indicators (3.1, 3.2, 3.4, 3.6 and 3.8) for tracking the progress on these targets have been used to frame objectives and targets under this campaign.
The intersectoral approach used in this campaign is needed to address other disability statistics else the dream of a prosperous nation will remain elusive. Last month, we completed 20 years of enactment of Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 and the lack of data itself speaks of the challenges ahead.With no disability statistics, how the Government frame policies for this largest minority of the world.
Father of the Nation Mahatama Gandhi once said, “A nation's greatness is measured by how it treats its weakest members."Unless and until people with disabilities are involved in this worthy goal of SDGs, the deal will not become real. Disability inclusion is the key towards human development.Yes, inclusion matters!
Table: SDG and Incheon Strategy disability indicators and Government of India’s response as per Right ToInformation (RTI)
1. Full text: PM Modi’s address at United Nations Sustainable Development Summit | The Indian Express [Internet]. [cited 2015 Nov 7]. Available from: http://indianexpress.com/article/world/world-news/full-text-pm-modis-address-to-the-united-nations-general-assembly/
2. World Health Organisation, World Bank. World Report on Disability. Geneva. WHO; 2011.
3. Groce, NE. "Disability in cross-cultural perspective: rethinking disability." The Lancet1999;354(9180): 756-757.
4. Nizar S. Impact of UNCRPD on the status of persons with disabilities. Indian J Med Ethics. 2011 Oct-Dec;8(4):223-9.
5. United Nations Human Rights. Office of the High Commissioner for Human Rights. Treaty bodies Download [Internet]. [cited 2015 Nov 22]. Available from: http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CRPD%2fC%2fIND%2f1&Lang=en
6. Census of India: Disabled Population [Internet]. [cited 2015 Nov 7]. Available from: http://censusindia.gov.in/Census_And_You/disabled_population.aspx
7. International Centre for Evidence in Disability (ICED), The Telengana Disability Study, India Summary Report,London School of Hygiene and Tropical Medicine (LSHTM) 2014 [available from http://disabilitycentre.lshtm.ac.uk]
8. Disability Indicators: SDG Advocacy Toolkit | International disability and development consortium [Internet]. [cited 2015 Nov 7]. Available from: http://www.iddcconsortium.net/resources-tools/disability-indicators-sdg-advocacy-toolkit
9. Ministry of Social Justice and Empowerment. Department of Empowerment of Persons with Disabilities. Information sought under RTI Act, 2005. F.No.32-1/2015-DD-III(Pt.VII) dated 23 October 2015.
10. Ministry of Statistics & Programme Implementation.Survey Design and Research Division. Information sought under RTI Act, 2005. No.A.12034/2/2015-SDRD(Admn.) dated 29 October 2015.
11. Draft code exempts 14 places from having toilets for disabled. The Times of India [Internet]. [cited 2015 Dec 22]. Available from:
12. ‘Make hospital websites disabled-friendly’. The Hindu [Internet]. [cited 2015 Dec 22]. Available from:
13. Tongsiri S, &Hawsutisima, K. The Application of ICF-based Functioning Data on Home Environment Adaptation for Persons with Disabilities. Disability, CBR & Inclusive Development, 2013;24(2): 40-53.
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