Young and ambitious: How a new crop of disabled leaders is ameliorating the community

Twenty-six-year-old Priya Srivastava from Uttar Pradesh’s Lucknow loves three things the most —sampling mouthwatering dishes, travelling and studying. Recently, when Srivastava was in Karnataka's Bengaluru —she did all her favourite activities. The wheelchair user gorged on dosas and vadas, visited malls and parks of the city and read as many research papers of her peers as she could.

It was a short visit of two days for Srivastava, a lawyer and disability rights advocate. Otherwise, she would have explored the oldest localities like Malleswaram to get a first-hand experience of Bengaluru's rich culture and heritage and eat the most authentic South Indian cuisines.

The 26-year-old, who has spinal muscular atrophy, a rare neuromuscular disorder, travelled to Bengaluru with her mother Reena Saxena and her caregiver Neelam Verma.

It was a "proud family moment" as Srivastava had completed her three-year rigorous research and advocacy on the "Importance of the caregiving support system for disabled people." She undertook the work as a Javed Abidi fellow. She was one of the 25 disabled youth leaders from across the country selected for the first batch of the fellowship on disability.

They all came together for a convocation ceremony in Bengaluru to celebrate their achievements. Senior disability rights activists say the fellowship, a first-of-its-kind in the country, marks significant progress in disability advocacy and policy reform.

The young advocates for disability rights came from the farthest corner of Northeast India, villages in Chhattisgarh and Uttar Pradesh to the slums of Delhi. They all have one or another kind of disability but that does not restrict them from working for their community.

Transforming communities

The young disabled leaders have taken the task upon themselves to transform their communities ensuring that disability rights are not just a policy on the paper, but a lived reality. Most of these young leaders are between 25 and 30 years old.

Although they have finished the programme, the fellows continue to work on issues close to their hearts. They are working on subjects that hardly got attention earlier.

Some of these issues are the impact of climate change on disabled people, the social and economic inclusion of queer and trans people with disabilities, STEM-based education for the visually impaired, accessibility in public healthcare, inclusive online education, digital accessibility, employment opportunities for individuals with Multiple Sclerosis (an invisible disability), and the need for accessible transportation, to name a few.

Discover, nurture and celebrate future leaders

New Delhi-based National Centre for Promotion of Employment for Disabled People (NCPEDP) launched the fellowship in 2021 when the world was reeling under the coronavirus pandemic. The idea was to discover, nurture and celebrate future leaders from within the community.

Bengaluru-based Azim Premji Foundation supported the NCPEDP’s fellowship programme. The initiative was specifically tailored for youth with disabilities and equip them with the advocacy tools necessary to address the barriers.

“Many people asked me why we launched the fellowship amid the pandemic. My answer was if not now then when. How long could we wait for disability to become mainstream?" asked Arman Ali, executive director of the NCPEDP.

The fellowship was named after India’s global face of the disability rights movement Javed Abidi. The former director of the NCPEDP died in 2018. The NCPEDP is a cross-disability and non-profit organisation working with persons with disabilities.

Talking about her experience as a fellow Srivastava said, "After being selected for the fellowship, I came to know that apart from mobility impairment, intellectual disabilities also need caregiving. People with low vision also need caregivers. As caregivers do important work by looking after others with love, care and attention, they should be honoured. It is an honourable job."

The 26-year-old lawyer added that caregivers face discrimination like people with disabilities.

Why caregiving is intrinsic to disability rights

"If a caregiver is pushing the wheelchair or helping a disabled person, he/she is considered doing menial work. So people avoid taking such jobs. In the Rights of Persons with Disabilities (RPWD) Act, 2016, the role of caregivers is mentioned in passing. There are no government schemes or allowances for caregivers of disabled people," said Srivastava.

Thus those who can pay have caregivers outside their family circle. Then what about those who don't have the finances to hire caregivers? Because family members also can't spend all their time with a person with disabilities.

Srivastava's surveys were focused on people with autism and Down syndrome. She found that the primary caregivers, the parents of people with autism and Down syndrome, are bereft of social inclusion. "The private companies should tie up with the government agencies to create an infrastructure through which those who can't afford can avail having a caregiver," she added.

Time to stand up for rights

Krishna Yadav is from the Janjgir-Champa district of Chhattisgarh. Like Srivastava, she has a locomotive disorder and is a wheelchair user. For the last three years, she has been researching and advocating for including children with disabilities in primary schools in the rural areas of Chhattisgarh.

"I am working towards inclusive education in the hinterlands. Over the years, I have worked with students, local authorities and school management. It was not an easy task to convince authorities to provide facilities for children with disabilities," said Yadav.

But her hard work bore fruits and many schools have built disabled-friendly toilets on their campuses.

India is home to around 2 crore and 68 lakh persons with disabilities, as per the 2011 census. This means around 2.21 per cent of the Indian population has one or another disability.

But activists working on the ground say the country is home to around 7 to 10 crore people with disabilities. These numbers are huge but policies and public services rarely reflect the needs of this community.

Young, ambitious and fearless

Aarti Batra, Disability Advocacy and Research Associate with the United Nations and a Javed Abidi fellow, said till she was 20 years old she had to travel from Gurgaon (her hometown) to Delhi for blood transfusion at a capital city's hospital every two weeks. Batra has thalassemia.

"It was tiring to travel so much for blood transfusion regularly. Now things have changed for the better. I go for the routine procedure in Gurgaon hospitals," added the 25-year-old.

Thalassemia is one among 21 disabilities identified under the RPWD Act, 2016. The others are blindness, low-vision, leprosy-cured persons, hearing impairment (deaf and hard of hearing), locomotor disability, dwarfism, intellectual disability, mental illness, autism spectrum disorder, cerebral palsy, muscular dystrophy, chronic neurological conditions, specific learning disabilities, multiple sclerosis, speech and language disability, haemophilia, sickle cell disease, multiple disabilities, acid attack victim and Parkinson's disease.

Batra's interest in health issues for persons with disabilities started after she attended an NCPEDP workshop. "Looking at the importance of early diagnosis amongst persons with disabilities, I started working with primary healthcare centers, primary responders and health workers, to identify the existing needs and gaps," she said.

Batra surveyed the community level for her baseline study, simultaneously sensitising the Asha and Anganwadi workers and disabled people. Now, she wants to use the insights she gained during the fellowship to advocate for the implementation of the health rights of persons with disabilities.

It is often the abled-bodied people who make policies and decisions on behalf of the disabled population. It is the abled-bodied people, again, who hold the power to implement projects related to the disability sector. In the process, not only the lived realities of disabled people are ignored but beneficiaries remain bereft of their actual rights.

“The fellowship programme marks a significant milestone in empowering young leaders within the disability rights movement. Our fellows have demonstrated that informed advocacy and persistent engagement can lead to substantial policy shifts and community empowerment. Their work is a tribute to the enduring legacy of Javed Abidi and his vision for a barrier-free world," said Ali of the NCPEDP.

Addressing the fellows, Meenu Bambani, NCPEDP trustee, added, "We need to populate mainstream spaces to fulfil the true meaning of inclusion."

The NCPEDP will announce the next batch of fellows in the coming months.

"The continuation of this program aims to provide youth with disabilities with meaningful experiences that support their involvement in the development sector and self-employment, thereby promoting disability inclusion across various fields," said Ali.