New Delhi: According to the World Health Organization (WHO), 15 per cent of the world’s population lives with some form of disability, out of which 80 per cent reside in developing countries like India. The pandemic has hit people differently, leaving some more devastated than others. As the world recovers, we have to do so together. We cannot leave anyone behind, because to do so would be a failure of love. What is Love? Not just romance, attraction and affection, but empathy, care, inclusion, humanity that treats each one as an equal. This is a love that recognises the right of all disabled people to live lives of dignity, with the same access to opportunities as anyone else. This is the love that does not see disabled people as persons dependent on society, that does not treat them as objects of pity, charity or medical treatment. It is a love that encourages and empowers people with disabilities.
A person can face a disability — intellectually and physically, at any point in their life from medical complications or life-altering events. Some people are born with it whilst others may acquire it. Though there has been a lot of improvement, greater awareness and change in the last 40 years, society is still the biggest barrier for people with disabilities. Stereotyping, stigma, and discrimination– these are all enduring challenges that have resulted in underemployment, inadequate job quality, marginalisation, and the othering of those with disabilities.
India was one of the first countries to ratify the UN Convention on Rights of Persons with Disabilities (UNCRPD) in 2007. It includes 33 articles covering all aspects of life. With 17 goals and 169 targets, the Sustainable Development Goals (SDGs) explicitly include disability and persons with disabilities in 11 places. Since India is strongly committed to Agenda 2030, this means there needs to be a synergy between the SDGs and existing government schemes and programs. We need to take into account the needs of persons with disabilities in our daily lives, because this is where the maximum challenges exist – either out of thoughtlessness or a lack of understanding the challenges of accessibility to workplaces and public spaces, as well as access to education, health and sanitation facilities, transport and new technologies.
How can we build an inclusive society?
- Addressing fundamental barriers causing exclusion of persons with disabilities, including discriminatory laws and policies, negative attitudes, stigma and discrimination
- Mainstreaming disability in the implementation of the Sustainable Development Goals
- Investing in monitoring and evaluating of progress towards the Sustainable Development Goals for disabled
- Bolstering the means of implementation of the SDGs for persons with disabilities in the areas of capacity building, technology, finance, policy, institutional coherence, and multi-stakeholders partnerships
Accessibility is not only an issue that applies to people with disabilities – it is an issue that affects everybody. An inclusive world is a better world and to achieve inclusivity for people with disabilities, we must talk about accessibility in a positive way. The Accessible India Campaign (Sugamya Bharat Abhiyan) is a nationwide campaign for achieving universal accessibility for Persons with Disabilities (PwDs). In 2016, after years of painstaking advocacy by disability rights activists, the Parliament expanded the number of disabilities covered under the law from 7 to 21.
In India, the employment rate of people with disabilities is abysmal. Data from the 2011 census shows that of the 13.4 million people with disabilities in India who are in the employable age group of 15-59 years, 9.9 million were non-workers or marginal workers.
According to a report released by Unearthinsight, India has almost 3 crore people with disability (PwD) of whom around 1.3 crore are employable, but only 34 lakh have been employed across organised, unorganized sectors, government-led schemes or are self-employed. Gaurav Vasu, Founder and CEO, Unearthinsight shared “The study covered the entire landscape of PwD talent in India, those who are above the age of 18 and could be potentially employed across banking, FMCG, retail, technology, BPO. It is extremely important to include them from the topline perspective as we call it in the corporate world, which is your GDP and the diversity that we bring in terms of knowledge and the contribution they can do”.
Given the fact that disability is known to be under-estimated in enumeration exercises, this number could in fact be much higher. But the bottom line is that we are forcing millions of young people with disabilities to be dependent on social security or their own families and caregivers. We are disabling them. As a nation, we have to ask ourselves what is it that we want for millions of people with disabilities – a lifetime of dependence or inclusion, dignity, employment & equal rights? You’ll be surprised to learn that the answer to that can add 5-7% to our annual GDP!
What does this exclusion mean for an emerging economy?
• Globally, the World Bank considers that leaving people with disability outside the economy translates into a foregone GDP of about 5% to 7%.
• The International Labour Organization (ILO) also suggests that including persons with disability into the workforce can have a positive impact of about 3-7% of the GDP
Esteban Tromel, Senior Disability Specialist, International Labour Organisation said, “A few years back we did a study to assess the impact it would have if persons with disability would have the same employment levels as non-disabled population and we came up with an increase of 3- 7per cent of the GDP.” The International Labour Organisation’s approach to the inclusion of persons with disabilities is grounded in both assuring the rights of persons with disabilities as well as recognizing the economic benefits of inclusion.
I think it is important that policymakers and other stakeholders stop thinking about the investments that are required for PwD to be able to fully take part in society in terms of assistive technology, personal assistance. We need to think about these supports that are not only a right for PwD to get them according to UN convention but also see them as an investment to turn from passive recipients to active citizens and taxpayers, adds Mr Tromel.
India is sitting on a huge, untapped talent pool of people with disabilities, that can play a crucial role in the country’s growth. With the right policy and strategy shift, and correct enforcement, there is a real chance that we work towards raising employability rates among the PwD population. Enable India, an NGO has been working towards the economic independence and dignity of people with disability since 1999. Shanti Raghavan, Founder, EnAble India told us,
Years back when my brother started to turn blind at the age of 15 we found solutions for each barrier and at each step he could see his own value so this journey culminated in him working in an MNC and now we want that journey for every disabled person in India. After seeing the work we have done with other NGOs I feel ‘Yo!’ seeing how much people with disabilities are achieving.
Along with learning employable skills, people with disabilities also need enabling mechanisms like assistive technology, accessible environments, financial inclusion, and most importantly willing employers. Dipesh Sutaria, Co-Founder & CEO EnAble India said, “To address the diverse problem by creating the honeycomb structure where we see this as a honeycomb with different honeycomb cells, for example, we have a cell called enable vision that addresses the equation of how do you enable and get the person with visual impairment ready for jobs and find them different livelihood options and build their aspirations”.
And from an employer’s perspective, Pravin Chand Tatavarti, CEO and MD, Allegis Global Solutions, Global Workforce Management told us, “Our journey with EnAble India started 10 years back and that is when our inclusion journey started. For us inclusion began with being pitiful, taking care of someone from a sympathy perspective but over the last 10 years, our definition has changed. Now inclusion means good business sense, innovation, means embracing that large part of the society which has been excluded and today we are excited to work with enAble and we have a lot of different people disabilities, they make us better people so I urge everyone to experience having a person with disability in your team and see the impact and changes it brings.”
Den joined EnAble India having essayed many roles in life. Known as the Stephen Hawking of Kolkata, author, award-winning actor, and radio jockey Sayomdeb Mukherjee, popularly known as Den, was born with a rare genetic disorder called Dopa-responsive Dystonia. He couldn’t speak for 25 years; in fact, his condition was only diagnosed after 25 years. But today 41-year-old Den is helping people with disabilities overcome their challenges, and lead fulfilling lives.
Life has been a big journey for me, in all frontiers whether I could or not speak but I have the confidence that when you have family, people and blessings of the all mighty, you will gain in life. I wanted to earn, to be economically independent and a miracle happened I got a call from a radio channel of Kolkata asking to anchor a show. Then I also acted in a movie, where I had to listen, remember, record and deliver the dialogues and with for the grace of God I got the award of best actor in Cincinnati awards, joyfully shared, Sayomdeb Mukherjee (Den), Project Lead, EnAble India (EILABS)
Another challenge is trained medical supervision for diagnosis and monitoring of the disabilities, chances of misdiagnosis are high, rare conditions often have no cure, and new drug development can take decades. “We need professionals, more research, activity for which we need resources and we will create more value to the world, to every aspect of upliftment of society, economy and culture”, adds Sayomdeb.
A disability is not necessarily a tragedy, nor do people with disabilities see it as such. Many people, facing great challenges have created, built, and found tremendous success in their lives. This is 27-year-old Benzy’s story. Benzy has not only released her own music albums, the first one at the age of 9, but also won three national awards, appeared in the Limca Book of World Records twice and has given more than a thousand performances all over India and internationally. Kavita, Benzy,s mom told us,
When Benzy was born, like all parents we were extremely happy, celebrated her but in 1.5 months everything changed. The doctor told us she has a problem and all her life she needs to be taken care of with therapies.
Benzy was diagnosed with Autism at a young age. A very special singer who cannot have a conversation, but expresses herself through music. Her mother, Kavita noticed that Benzy’s eyeballs were rolling with a musical toy that had lights but she couldn’t understand what she is reacting to – the lights or the music. “We gradually introduced music into her life as our Indian music ragas have healing power and they stimulate different nerves”, shared Kavita, Benzy’s mother. She began learning Indian classical ragas from a very young age, to help her voice and speech. But singing ragas transformed her feeble voice into a stronger, more melodious one.
Parental involvement plays a critical role in the development of children with Autism Spectrum Disorder. And Benzy is lucky as she has all their support and love. “Music is her medicines, her soul, her language”, adds Kavita.
The support that disabled people need, and that someone like Benzy receives every day, can come from families and extended communities, or then from each other. Madhu and Dinesh’s is one such story, a story of unconditional love. Madhu is 100% visually challenged since birth, with a fully damaged optic nerve. Dinesh lost his sight gradually, till he was left with none of it by the time he was 8. They both met in a software company that develops screen readers. A screen reader uses speech technology to let blind users work with computers. Madhu Bala Sharma, Senior Consultant, learning and development, Concentrix shared her love story. “We first met at the National Association for Blind in our teenage years but we met properly at the software company, where I was a tester and he a software developer. His proposal was very interesting, he continued asking me about proposing a girl but after taking all the ideas from me, he told me that I was the girl he liked.”
Madhu and Dinesh live with their son 15-year-old Namish and lead a normal life.
We live like anybody else, of course we have our up-downs, fights on parenting, holidays, outings and we are contributing members of society, happy tax payers. Since we get resources to raise our son and most importantly our perspective is to give ourselves independence instead of the feeling of pity or poor thing associated to us, adds Ms Sharma.
Both Madhu and Dinesh are strong supporters of education and technology and believe they are the great enablers of our time. Technology, in fact, played a key role in Dinesh’s life.
We have the lived experience of disability so we know what we want so persons with disability themselves should be involved in any technology development, so when I developed the software for the disabled community, I felt this is not just something that is needed but I developed it because I knew what I needed. Being disabled, I also took feedback from many people with blindness. So technology is very important as for us it is like getting our eyes back, shares Dinesh Kaushal, Manager Technology, Publicis Sapient.
Over the last few years, the disability rights movement has been instrumental in effecting inclusive laws, which have proven to be hard-fought victories. The question now is the transition from acceptance to equal partnerships. Until more people who have disabilities enter the government, public spaces, schools, offices, an understanding of their differences and needs will be as vague as it is now in the public sphere. To be able to realize the goal of inclusiveness, a radical shift in perspective, that of being equal partners in development and decision-making, is needed first. People with disabilities form the largest minority group, but unfortunately, this group has always remained a marginal priority. To become an all-inclusive and accessible society we need to change our perceptions towards disability and collaborate with the disabled community to break down barriers because it is this love that makes us human – love that doesn’t discriminate, love that accepts, includes and inspires.
NDTV – Dettol have been working towards a clean and healthy India since 2014 via Banega Swachh India initiative, which is helmed by Campaign Ambassador Amitabh Bachchan. The campaign aims to highlight the inter-dependency of humans and the environment, and of humans on one another with the focus on One Health, One Planet, One Future – Leaving No One Behind. It stresses on the need to take care of, and consider, everyone’s health in India – especially vulnerable communities – the LGBTQ population, indigenous people, India’s different tribes, ethnic and linguistic minorities, people with disabilities, migrants, geographically remote populations, gender and sexual minorities. In wake of the current COVID-19 pandemic, the need for WASH (Water, Sanitation and Hygiene) is reaffirmed as handwashing is one of the ways to prevent Coronavirus infection and other diseases. The campaign will continue to raise awareness on the same along with focussing on the importance of nutrition and healthcare for women and children, fight malnutrition, mental wellbeing, self care, science and health, adolescent health & gender awareness. Along with the health of people, the campaign has realised the need to also take care of the health of the eco-system. Our environment is fragile due to human activity, that is not only over-exploiting available resources, but also generating immense pollution as a result of using and extracting those resources. The imbalance has also led to immense biodiversity loss that has caused one of the biggest threats to human survival – climate change. It has now been described as a “code red for humanity.” The campaign will continue to cover issues like air pollution, waste management, plastic ban, manual scavenging and sanitation workers and menstrual hygiene. Banega Swasth India will also be taking forward the dream of Swasth Bharat, the campaign feels that only a Swachh or clean India where toilets are used and open defecation free (ODF) status achieved as part of the Swachh Bharat Abhiyan launched by Prime Minister Narendra Modi in 2014, can eradicate diseases like diahorrea and the country can become a Swasth or healthy India.