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With Important Data On Disability Missing, How Does India Hope To Achieve Development?

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By Dr Satendra Singh:

Historically, there was an invisibility of people with disabilities in the international human rights system despite people with disabilities having the same human rights as everyone else. This changed ten years ago when the Convention on Right of Persons with Disabilities (CRPD) was ratified as the first human rights treaty in the 21st century with a record number of signatories in history to any United Nations (UN) Convention. The CRPD is one of nine core international human rights treaties and also the first internationally legally binding instrument to address the plight of persons with disabilities globally.

By July 2016, 166 out of 193 United Nations Member States (Netherlands being the latest) along with one regional organisation (the European Union) or over 85% of countries have ratified the CRPD.  Another significant event which happened was the adoption of the 2030 Agenda for Sustainable Development by the UN Member States in September 2015. Whereas the Millennium Development Goals were framed behind closed chambers without involving the disability sector, Sustainable Development Goals (SDGs) were framed in consultation with the disability sector.

The onus lies on us to mainstream the provisions of the Convention and link them to the 2030 Agenda and the SDGs. To truly leave no one behind and keep the level of ambitiousness of the 2030 Agenda, Member States have to actively involve persons with disabilities and organisations in their development work.

Despite ratifying the Convention, it took India 8 years to submit its first country report on UNCRPD implementation. If we blame this on previous government, the current one has lagged behind too. The Rights of Persons with Disabilities Bill is still in Parliament. More than that, we do not have data on disability indicators to frame relevant policies. With an eye on the 2030 Agenda, I filed a petition under Right to Information (RTI) to gather data on disability indicators related to SDGs. The results showed how much we are lagging behind.

To explain the things better, the table below highlights SDGs (where disability is explicitly included), related articles of UNCRPD and the RTI questions on disability indicators:

Sustainable Development

Goal

Related Articles of

the UNCRPD

Disability indicators which were asked in RTI questions
4 Quality education 5, 6, 7, 9, 16, 24, 27, 31, 32 Primary and secondary school net attendance ratio for children with disabilities

%  of teachers in service who have received in-service training in the last 12 months to teach students with special educational needs

%  of schools (primary, lower and upper secondary) with adapted infrastructure and materials for students with disabilities

8 Decent work and economic growth 5, 6, 9, 12, 16, 27, 31 -%  of women and girls who make decisions about their own sexual and reproductive health and reproductive rights, disaggregated for persons with/without disabilities
10 Reduced inequalities 4, 5, 6, 7, 8, 9, 11, 16, 28, 31, 32 -% of population using safely managed sanitation services, disaggregated for persons with/without disabilities
11 Sustainable cities and communities 4, 5, 6, 7, 9, 11, 16, 20, 28, 31, 32

-%  of public transport vehicles meeting the minimum national standards for accessibility by persons with disabilities

-%  of public buildings meeting the ISO 21542:2011 standards on accessibility and usability of the built environment

-%  of public green spaces (parks and recreational facilities) meeting the  minimum national standards for accessibility by persons with disabilities

17 Partnerships for the goals 9, 21, 31, 32 -% of countries with data for all disability-related indicators and disability disaggregation of the SDG framework, in the last 5 years

I basically asked about the data on disability indicators. In fact, the World Report on Disability 2011 encourages nations to gather data on disability statistics. The important sources of vital statistics in India besides the Population Census are (1) Civil Registration System; (2) Demographic Sample Surveys such as those conducted by the National Sample Surveys Organisation (NSSO); (3) Sample Registration System (SRS) and (4) Health Surveys, such as National Family Health Surveys and District Level Household Surveys.

NSSO, Kolkata vide their RTI reply provided 14 year old information as the ‘latest’ information. Their response read:
“Latest survey conducted by NSSO on ‘Disabled Persons’ was carried out during July-Dec 2002 through Schedule 26: Survey of Disabled Persons. The survey covered whole of Indian Union except (i) Leh and Kargil districts of J&K, (ii) interior villages of Nagaland located beyond 5 kms from the bus routes and (iii) villages in Andaman and Nicobar Islands which were inaccessible throughout the year.”

The link of NSS report no. 485 (based on NSS 58th round survey on disabled persons in 2002) was provided as this: http://mospi.nic.in/Mospi_New/Admin/Login.aspx

One has to create an account and password to access the report (the report was found available on the internet). The definition of disability used in the NSS 58th round was: “A person with restriction or lack of abilities to perform an activity in the manner or within the range considered ‘normal’ for a human being was treated as having disability.” Will the Minsitry of Statistics and Programme Implementation (MoSPI) explain to the people with disabilities of this country what do they mean by ‘normal’? Do they mean that people with disabilities are abnormal?

In the absence of reliable data from the Civil Registration System (CRS), the need for reliable vital statistics at national and state levels was being met through sample surveys (NSS). However, analysts believed that one-time retrospective recall surveys such as NSS may not be able to estimate the vital rates correctly. This resulted in the birth of the Sample Registration System (SRS). However, the RTI response from the Vital Statistics Division (SRS) mentioned that they do not compile data separately for persons with disabilities. CRS had already stated in a separate RTI reply that data on disaggregation for children with or without disabilities is not covered under CRS.

MoSPI also transferred my RTI application to the Office of the Registrar General (Ministry of Home Affairs). The Civil Registration System is a major foundation for a legal system for establishing the rights and privileges in the country be it non-disabled people or the so called ‘divine’ people with disabilities.

The Office informed about the Population Census 2011 and stated that it include data on the disabled population by type of disability, marital status, age, sex, 0-6 population and economic status among total population, SC and ST. However, data on drinking water facility, latrine facility (despite Swachh Bharat Abhiyan in place) and drainage system were not specifically collected for disabled population. The tall claims of Census 2011 falls flat as Thawar Chand Gehlot, Union Minister for Ministry of Social Justice and Empowerment, has himself raised questions about its validity: “The census figure does not provide a clear and proper picture on the actual number of disabled persons.”

The widely criticised Census reported the disability population (2.1% of population in 2001) as 2.2% of population. A Telangana disability study group called the ‘International Centre for Evidence in Disability’, 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.

The Office of the Registrar General also forwarded my RTI to the Ministry of Health & Family Welfare (MoHFW), Ministry of Road Transport & Highways (MoRTH) and Ministry of Human Resource and Development (MHRD) to provide further information.

Not unsurprisingly, neither the Family Planning Section nor the Statistics Division of MoHFW had any information on disability indicators linked to SDGs. MoRTH also replied that none of the information, including the percentage of public transport vehicles meeting the minimum national standards for accessibility by persons with disabilities, is compiled or maintained by their Transport Research Wing. MHRD through the Department of School Education and Literacy gave a single statement reply that the information sought is not maintained in the section. Since I stay in Ghaziabad, the RTI was transferred to the Principal Secretary (Basic Education), Government of Uttar Pradesh to furnish the info but the quest for data continues.

Let’s move on to the nodal ministry. Department of Empowerment of Persons with Disabilities vide F.No.32-1/2015-DD.III (Pt.VII) dated 23 Oct 2015 stated that “no such information is available” and “no such data is available” for the questions maintained in the aforementioned table. The nodal department has no data on these disability indicators which are in fact linked to SDGs and represent the UNCRPD articles (see table below). I wonder how policies are designed in the absence of data.

Articles of the UNCRPD Related Sustainable Development Goals
4 Representative decision making Reduced inequalities (10), Sustainable cities and communities (11)
5 Equality and non-discrimination Quality education (4), Decent work and economic growth (8), Reduced inequalities (10), Sustainable cities and communities (11)
6 Women with disabilities Quality education (4), Decent work and economic growth (8), Reduced inequalities (10), Sustainable cities and communities (11)
7 Children with disabilities Quality education (4), Reduced inequalities (10), Sustainable cities and communities (11)
8 Awareness-raising Reduced inequalities (10)
9 Accessibility Quality education (4), Decent work and economic growth (8), Reduced inequalities (10), Sustainable cities and communities (11), Partnerships for the goals (17)
11 Risk and humanitarian emergencies Reduced inequalities (10), Sustainable cities and communities (11)
12 Equal recognition before the law Decent work and economic growth (8)
16 Freedom from exploitation, violence and abuse Quality education (4), Decent work and economic growth (8), Reduced inequalities (10), Sustainable cities and communities (11)
20 Personal mobility Sustainable cities and communities (11)
21 Access to information and communication Partnerships for the goals (17)
24 Inclusive education Quality education (4)
27 Work and employment Quality education (4), Decent work and economic growth (8)
28 Adequate standard of living and social protection Reduced inequalities (10), Sustainable cities and communities (11)
31 Statistics and data collection Quality education (4), Decent work and economic growth (8), Reduced inequalities (10), Sustainable cities and communities (11), Partnerships for the goals (17)
32 International cooperation Quality education (4), Reduced inequalities (10), Sustainable cities and communities (11), Partnerships for the goals (17)

I complained about the same to the Court of Chief Commissioner for Persons with Disabilities (CCPD) which is mandated to safeguard our rights. Rather than taking action, the CCPD merely forwarded the matter to the Director, Disabilities (DD-III), DEPwD and advised me to follow up over there. I am yet to receive any response from the Department. The same grievance was sent to the Prime Minister’s Office (PMO) since our PM made a strong pitch at the UN General Assembly last year on SDGs. PMO office failed to understand the matter and forwarded the same to the Chief Secretary of Uttar Pradesh (as I stay in UP) and closed the matter. I shared the same information with the  Government of Delhi to include disability indicators in the State framework to achieve the Global 2030 agenda. The Social Welfare Department of the Delhi government acknowledged the letter stating “Suggestions given by you are noted and shall be considered.”

Nelson Mandela said, “For to be free is not merely to cast off one’s chains, but to live in a way that respects and enhances the freedom of others.” To achieve the global agenda 2030, states, nations and UN member states all have to work together. Until and unless the world’s largest minority (people with disabilities) is involved, we will never be able to achieve this dream. For long, we have suffered because of the insensitivity of governments and the lack of disability data.The time has now come to implement UNCRPD in letter and spirit and link disability with SDGs to achieve the Agenda 2030. Rather than marginalising people with disabilities as ‘divine’, we need to bring disability into SDGs to usher into a new era of equality, independence and freedom. We are still a long way from true independence.

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

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MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

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A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

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A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

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A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
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Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
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