Intro: According to the National Centre for Promotion of Employment for Disabled People (NCPEDP) India has nearly 25 million persons with disabilities aged between 15 and 25 years looking for equal participation and inclusion in society and the development discourse. And not just masses, but even the healthcare personnel aren’t aware of the fact that there are 21 types of disabilities! Thus, this week Senior Journalist Mahima Sharma holds an intense, exclusive interaction with Mr Arman Ali, Executive Director NCPEDP on what kind of government policies, empathy and support from the masses who are on the other side of the spectrum plus other policies/programs are needed for the wholesome inclusivity, development and progress of the specially abled. All the more because, Mr Ali states that Women with disabilities are “excluded within an exclusion” as they are often caught at the intersection of two vulnerabilities of gender and disability. He also asserts that education and awareness towards the disbaled must start at school level so that the masses don’t treat them as an entity for charity, rather support their individual human right. This and more in an exclusive, in-depth chat only at IndiaStat. Take a read…

MS: You weren't too happy with the Union Budget towards the Divyang this year. What kind of economics and policies would you like to suggest to the Indian Government for the wholesome inclusivity, development and progress of the specially abled?

AA: As per Census 2011, 2.21% of India’s population has some disability. The actual number is far more than this. But even if we take 21 million people into account, are the existing government disability responsive planning and budgeting sufficient? Sadly, no. What we need is specific earmarking of budgets for disability under central and state schemes of all ministries and departments, like education (universities). Also, there should be a definite budget for remuneration for Special Educators and therapists to be at par with regular teachers/therapists.

In addition, we need a dedicated budget for reasonable accommodation and sensitisation programs for the development of both Persons with Disabilities and society. These programs should be focused on both the public and private sectors. Thereafter, the government should allocate separate funds to develop accessible infrastructure, community hospitals, primary health centres and district hospitals that specialise in catering to the persons with disabilities population. There should also be an earnest budgetary allocation for life and health insurance schemes for Persons with Disabilities.

Also, to further encourage individuals and organisations to use and promote Universal Design for accessibility in both the physical environment and ICT (Information and Communication Technologies), the government needs to make provisions for adequate rebates and concessions.

MS: According to a recent news report: India has almost 3 crore people with disability (PwD) of which around 1.3 crore is employable but only 34 lakh of them have been employed across the organised sector, unorganised sector, government-led schemes or are self-employed. What's your take on better steps to be taken at a) State b) Centre B) Employer D) Individual Level.

AA: Unfortunately, even after 74 years of independence, there are not many schemes introduced by the Indian government that are helpful for Persons with Disabilities. This problem is more infuriating because many private employers and individuals are unaware of even existing schemes. The Department of Empowerment for Persons with Disabilities (DEPD) has schemes under which private employers that conduct skill development training Persons with Disabilities are provided incentives. However, due to the lack of awareness, these schemes have not achieved the expected targets.

At this juncture, it is imperative to take corrective measures to ensure the right development of the persons with disabilities population. Foremost, Central and State governments should include private employers under the ambit of the RPWD Act, 2016. This step will make certain that provisions under the (RPWD) act like reasonable accommodation, equal opportunity, and reservation can be made mandatory in the private sector too.

Governments should come together with other stakeholders to identify the gaps and challenges that Persons with Disabilities and their employers face. This will help them facilitate the inclusion of the persons with disabilities population. Government should push for self-employment of Persons with Disabilities and launch schemes to encourage persons with disabilities towards self-employment and entrepreneurship. These steps are the need of the hour, and will help achieve the government’s vision of ‘Sabka Saath, Sabka Vikas’ holistically.

MS: The Internet Governance Forum set up in 2021 was aimed at accessible internet for every Indian—regardless of gender, level of disability, or economic status. What’s the progress of the same among the persons with disabilities population? Also, how can the government of India bring in Artificial Intelligence to educate and help the persons with disabilities masses?

AA: Accessibility can be defined as an inherent right of persons with disabilities which ensures that they are able to access all rights and fundamental freedom as well as participate fully in society on equal terms with others. No one can enjoy a human right that they cannot access and persons with disabilities often face multiple barriers that hinders their equal and full participation in society.

The RPWD Act 2016 under Section 40 states that the Central Government shall, in consultation with the Chief Commissioner, formulate rules for persons with disabilities laying down the standards of accessibility for the physical environment, transportation, information and communications, including appropriate technologies and systems, and other facilities and services provided to the public in urban and rural areas.

However, in spite of having an Internet Governance Forum, access to the internet still continues to be a problem. One of the primary problems is that many people assume that accessibility is limited to the physical infrastructure. Digital accessibility is often overlooked in a world where web-based content influences wide ranging aspects of one’s life. Realising the importance of making content available on the web accessible to all, the W3C developed the Web Content Accessibility Guidelines (WCAG). The WCAG explains how to make content accessible for persons with disabilities. Web ‘content’ indicates information in a web page or web application including:

• Natural information such as text, images and sound
• Code or markup that defines presentation, structures etc

With the advent of the Digital India Campaign and the increased dependence on the web, the Guidelines for Indian Government Websites (GIGW) was formulated to bring in standardisation and uniformity in websites and applications belonging to the government. These standards and guidelines help make the Indian government websites: Usable, User-centric and Universally accessible. It also helps bring uniformity in the quality of content keeping in mind the needs and concerns of all its citizens including people with audio-visual impairments and thereby allowing information and services to be rendered by all in an accessible manner.

The Department of Empowerment of Persons with Disabilities (DePwD) under the Ministry of Social Justice and Empowerment, Government of India had launched the Accessible India Campaign as a nationwide campaign to achieve universal accessibility for persons with disabilities.

A review of the portal showcasing the websites that have met the mandatory guidelines of the GIGW indicate that:

1. Of the 49 Central Government Ministries only 13 have met the mandatory accessibility standards as per the GIGW
2. Of the 63 Departments under the 49 Union Ministries only 5 have met the mandatory accessibility standards as per the GIGW
3. 23 Directorates/Institutes/Affiliate Organisations to the 49 Union Ministries have met the mandatory accessibility standards as per the GIGW

Further, based on the answer received to one of the Unstarred Question No. 1912 answered on 04.08.2021 at the Rajya Sabha by the Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment it was found that 590 websites at the state government level have been made accessible out of which only 446 have been made LIVE.

The aforementioned data and information clearly suggests that digital inclusivity for persons with disabilities in India is still a long way off.

MS: A significant population with disabilities in India lives in rural areas. Your take on the urban-rural divide and suggestions towards inclusive policies for them?

AA: Inclusion has to start in all aspects and cannot be limited to just one inclusive policy for the rural population. For instance, the impact of being immobile in a rural setup compared to urban situations is considerably more significant. Mobility is essential for everything self-care, sanitation work and play. Without mobility, the barriers to participation in life are immense, and each of these barriers may impede one’s access to a better living.

Lack of physical access to basic infrastructure facilities like hand pumps makes the individuals dependent on others for performing basic lifestyle activities. Sanitation is another aspect that affects women with disabilities more where the choice is often to defecate in open fields and farmlands. Also, obtaining a disability certificate is tiresome as most healthcare professionals are unaware of the 21 types of disabilities mentioned in the RPWD Act 2016.

Similarly, in terms of education, there are massive gaps. First, there aren’t enough schools in the rural areas. And the schools that are functioning are often not accessible for Persons with Disabilities, thereby affecting their access to education.

The general belief is that achieving accessibility requires a high level of technical expertise in rural settings. This belief needs to be challenged. Design Solution works best when it is achieved through a participatory approach involving the users, their caregivers and other members of the society. It is high time for the government and society to stop giving excuses and start leveraging these new-age solutions to bring inclusivity for all, including Persons with Disabilities.

MS: Many reports showcase that women and transgender with disabilities are less likely to be employed than men with the same disabilities. Please elaborate on the policy changes required towards all-inclusive gender diversity across various sectors?

AA: Women with disabilities are “excluded within an exclusion” as they are often caught at the intersection of two vulnerabilities of gender and disability. This intersection affects all aspects of their life, social, political and personal and moves them into the severely marginalised category. The vulnerability of women with disabilities is often based on the naturalistic interpretation which perceives them as physically and mentally weaker sections of the community.

Both women and men with disabilities face discrimination in terms of employment. But with women with disabilities, these dicrimation are far more severe. There is a need to adopt active recommendations to develop affirmative actions that address the needs of women with disabilities and a policy framework for them in the labor market.

It is crucial for both the private and public sector to encourage the representation and participation of women with disabilities in decision making through consultation, training and awareness raising measures. There should also be Vocational guidance created specifically for this cohort. At workplaces, reasonable accommodation should be put in place to address the specific needs of workers with disabilities. Also, there should be access to justice and protection against workplace abuse of these people by incorporating the disability dimension into legal provision. Workplaces should be also equipped with healthcare services to ensure basic assistance to these women going through rehabilitative and reproductive health issues.

Although discrimination faced by women with disabilities is increasingly being recognised, the steps are far too less and underserved. There is a need to increase the social and political awareness on the many types of discrimination faced by these women and the need for targeted measures.

MS: Inclusion and diversity for the Divyaang have become tougher owing to hybrid work models. What kind of overall new HR laws and policies need to be implemented for them, so that they neither lose an existing job nor find it tougher to get one?

AA: Reasonable accommodation and equal opportunities for all should be the yardstick for HR laws and policies. Accommodation/adjustments may be required to address these barriers and to create a level playing field for Persons with Disabilities in the workplace. This includes providing assistive devices and technologies and flexible work timing for a person with a psycho-social disability who may feel fatigued in the evening hours.

Further, with most of the work moving online, all technologies should be compliant with accessibility standards (Web Content Accessibility Guidelines). The IT support team should be trained to install assistive technologies and address any digital accessibility issues. While the list in terms of HR laws and policies is huge, even a few small steps in the right direction can set the tone for the future.

MS: Mr Ali, you have always emphasised on the absence of disability disaggregated data and critical need for the same towards extensive research while policy making and developmental governance. Can you exemplify the same with some deeper data insights to showcase the challenges you and your organisation are facing in helping the needy disbaled?

AA: Understand it this way: Rajya Sabha Unstarred Question No. 257 regarding data on Persons with Disabilities vaccinated and deceased due to COVID-19 states that as of November 28th, 2021, according to the CoWIN portal, 8390 Persons with Disabilities received the first dose and 4018 received both doses. Regarding the number of Persons with Disabilities deceased due to COVID-19, the data was unavailable.

Another instance of a Times of India article dated October 14th, 2021, states that only 20,000 PwDs have been vaccinated in Maharashtra (estimated by public health officials). Maharashtra state public health officials stated that nearly 22901 Persons with Disabilities had been vaccinated to date, but the numbers may be higher. With the CoWIN app not having a separate category, the tally must be coordinated with the disability commissioner’s office.

The aforementioned two instances show that disability is largely absent from data collection and monitoring mechanisms. The invisibility of persons with disabilities in the mainstream development narrative results in development interventions unintentionally leaving them out. Policy makers and practitioners tend to leave them out due to unavailability of data.

For example, if policy makers want to understand the effectiveness of interventions for malaria, HIV or maternal health, there is no shortage of available scientific evidence. But when it comes to disabilities, there is a dearth of data. This makes it harder to establish the availability and effectiveness of interventions aimed at improving the lives of persons with disabilities who face multiple barriers to full participation in society.

MS: Since you exemplified the above answer reletaing to COVID19 pandemic, let me please ask you what kind of law and policy change does India’s persons with disabilities population need on an immediate basis? (All the more considering the dreaded days they have faced during the raging waves of the pandemic).

AA: Rather than inventing the wheel altogether, there is a need to ensure timely implementation of already existing guidelines. The government needs to focus on the timely and effective execution of Disability inclusive Disaster Risk Reduction (DIDRR) guidelines. They also need to raise awareness around Disaster Risk Reduction (DRR) planning and services amongst Persons with Disabilities and institute the inclusion of Persons with Disabilities and their organisations in DRR activities as stipulated in the RPWD Act 2016.

In addition, the government has to adopt a two-track system built on mainstreaming and providing specialised services. It is pivotal to include persons with disabilities at each stage of the disaster reduction process. Starting from preparedness to accessible warning systems, safe evacuation, accessible shelters, relief and reconstruction, Persons with Disabilities should be kept in the loop properly. In-depth consultation with Persons with Disabilities and their organisations is required and shouldn't be taken lightly.

MS: One more related query - many people have been left with disabilities due to paralysis, due to post COVID-19 complications. What kind of an essential support system is needed from the three levels: a) Employer (if the person was employed) b) Government C) Society

AA: Let me bifurcate my answer into three things separately as each needs a deep consideration. When we talk of the Employer, then Equal Opportunities policies and reasonable accommodation for persons with disabilities as mandated by the RPWD Act, 2016

What must the Government do? Mahima, persons with Disabilities with comorbidities face additional difficulties while accessing healthcare facilities. The same is true for the Persons with Disabilities suffering from COVID-19. This calls for strengthening the entire healthcare system. Healthcare workers are often not trained or equipped to deal with Persons with Disabilities. There is a lack of doctors who are trained in problems related to persons with disabilities people. This needs improvement in alignment with the inclusivity initiatives of the government.

Now coming to the society, well for Persons with Disabilities, society doesn’t have to build mountains but simply become more aware and sensitised. Instead of pitying Persons with Disabilities, the idea should be to empathise and treat them as equals.

MS: During the pandemic, NGOs working with the persons with disabilities faced a lot of financial crunches as the CSR funds were mostly diverted to the PM Cares for the overall national cause. What kind of future economic policies are needed to ensure a smooth working of the supportive organisations if/when any such calamity strikes?

AA: In every emergency or crisis, the government expects NGOs to help out. NITI Aayog CEO wrote to all the NGOs appealing to them to help the government fight against the virus. However, when it comes to giving grants, there are several roadblocks for NGOs. With the attraction of a 100% tax deduction, money dedicated to the NGOs was diverted to the PM CARES Fund. This, in turn, affects the development of already marginalised communities like persons with disabilities. Some measures have to be laid out to not negatively impact NGOs.

MS: Various international studies suggest that people with intellectual disabilities are at a higher risk of fatality than people with physical deformities. What kind of government policy should be made for such masses, especially children in India?

AA: To address higher risk of fatality, healthcare systems for Persons with Disabilities should be strengthened. Persons with Disabilities and their families should be given priority in treatment, in line with the recommendations from the WHO. All persons responsible for handling emergency response services should be linked to organisations specialised in disability in the locality to address problems patients face with specific impairments.

The government should incorporate online counselling mechanisms to help Persons with Disabilities and their families cope with the pandemic's stress. There should be a special helpline for Persons with Disabilities. The PMO should establish centralised systems and a proper delegation mechanism to establish location-wise helplines.

MS: In 2021, (NCPEDP) announced a three-year immersive grassroots fellowship programme. Please throw light on the same in detail for our readers from the education sector.

AA: The NCPEDP-Javed Abidi Public Policy Fellowship on Disability is a three-year immersive leadership development. It is a first-of-its kind fellowship in the country. Through this fellowship, we envision to develop a second line of leadership for the Indian disability movement. The program will equip fellows with in-depth grassroots knowledge and hands-on experience of urban and rural realities and evidence-based policy analysis. Currently, we have 25 fellows working in different states across the country on issues like education, employment, and climate change, to name a few. The Azim Premji Foundation funds the fellowship.

MS: Wrapping up the interview, I would like to ask one last question. Indians overall lack awareness on how to help fellow persons with disabilities. What kind of educational revolution is needed so that the vast population that we have can become a great encouragement and support system to the fellow disbaled Indian?

AA: There is a general lack of sensitisation towards Persons with Disabilities. People often view Persons with Disabilities from a charity perspective and not from a human rights one. Persons with Disabilities are often subjected to pity or sympathy, but never empathy. There is a dire need to create more awareness around the rights of Persons with Disabilities which should start right from schools. Every student should be taught the lesson of inclusivity. It is crucial for the right development of any individual, organisation, nation or the world in general.

About Mr Arman Ali

Arman Ali has been a disability rights activist for over two decades now and is currently heading the NCPEDP as the Executive Director. Registered in 1996, the National Centre for Promotion of Employment for Disabled People (NCPEDP) is the country’s leading cross-disability, not-for-profit organisation working as an interface between Government, Industry, International Agencies and the Voluntary Sector towards empowerment of persons with disabilities.Before NCPEDP, he worked as the HR Specialist, Equal Opportunity Initiative, Infosys. Following Infosys, he served as the Executive Director for Shishu Sarothi wherein he was instrumental in forging ties beneficial for people with disabilities and the organisation, taking it forward in the areas of early intervention, rehabilitation, education, employment, advocacy, awareness as well as legal aid for both children and people with disabilities. He has also held several Honorary Positions in various important Committees of Government at the state and national levels. He was part of UNESCO’s Editorial Board on State of the Education Report for India 2019 -Children with Disabilities. Arman is an alumnus of the International Visitor Leadership Program of the United State’s Department of State and has also undergone a Leadership in Public Policy Training conducted by Oxford University.

Arman is a recipient of various awards namely, Rotary Literacy Hero Award 2016 for exemplary work in ensuring better education to children with disabilities, the IBN7 Super Idol Award 2011 for his services towards the welfare of persons with disabilities, Infosys Excellence Award for Inclusivity and Diversity from Infosys for the year 2007, Outstanding Individual Award for the Year 2007 from Atma Nirbhar – Ek Challenge, a non-profit organisation working for people with disabilities, the National Award in Public Recognition for Outstanding Performance as the Most Efficient persons with disabilities Employee for the Year 1998 by the Ministry of Social Justice and Empowerment, Government of India from the then Prime Minister, Shri Atal Behari Vajpayee.

About the Interviewer

Mahima Sharma is an Independent Journalist based in Delhi NCR. She has been in the field of TV, Print & Online Journalism since 2005 and previously an additional three years in allied media. In her span of work she has been associated with CNN-News18, ANI - Asian News International (A collaboration with Reuters), Voice of India, Hindustan Times and various other top media brands of their times. In recent times, she has diversified her work as a Digital Media Marketing Consultant & Content Strategist as well. Since March 2022, she is also a pan-India Entrepreneurship Education Mentor at Women Will - An Entrepreneurship Program by Google in Collaboration with SHEROES. Mahima can be reached at media@indiastat.com

Disclaimer : The opinions expressed within this interview are the personal opinions of the interviewee. The facts and opinions appearing in the answers do not reflect the views of Indiastat or the interviewer. Indiastat does not hold any responsibility or liability for the same.