Despite existing laws, why do persons with disabilities still fight for basic rights? Dr Seema Lal and Suchitra Narayan

In a recent case [Seema Girija Lal v. Union of India], the Supreme Court noted the poor implementation of the provisions of the Rights of Persons with Disabilities Act, 2016 by states and union territories and directed them to ensure compliance with the provisions of the Act. The Union Ministry of Social Justice and Empowerment has been ordered to coordinate with all state governments and UT administrations and submit a status report to the Court before the next hearing..This order was a result of a petition filed by Dr. Seema Girija Lal, founder of Together We Can, an advocacy group aimed at addressing issues related to mental health and disability.In this interview, Dr Seema and Suchitra Narayan, founder of SANSKRITI - Resource Centre for Inclusion, an organisation that works in the areas of disability rights and advocacy, speaks about the shift from charity to a rights-based model, how the Rights of Persons with Disabilities Act (RPwD Act), 2016 can be better implemented, and more..What inspired you to file a petition before the Supreme Court regarding the enforcement of the RPwD Act? What specific challenges or issues have you encountered in the disability sector that prompted you to take this legal action?.Dr Seema Girija Lal: The key goal was to localize distress resolution and make it easier for families of and persons with disabilities (PwD) to address their grievances. The background comes from our journey with Together We Can since 2015, as we fought for five years to bring in regulations for private therapy centers in Kerala. These efforts couldn’t materialize due to the lack of district level committees (DLCs) in place which could implement our demands. DLCs are a mandate as per the RPwD Act. We observed a stark contrast between the RPwD Act on paper and in reality. Our aim is to bridge this gap, not just in our State, but nationwide. This isn't about individuals or organizations, but about improving society’s quality of life..Suchitra Narayan (SN): Despite constitutional guarantees of equal rights, PwD often face discrimination, being treated as ‘beggars.’ They encounter challenges in accessing public spaces, leading some families to keep their disabled children indoors. The 2016 RPwD Act broadened the list of recognized disabilities, but there are still gaps. The Act is cleverly drafted to avoid punishing those who don’t uphold its rules, using phrases like “the injustice to PwD may be an act of omission and not intentional.”Many places lack DLCs. Even after the recent Supreme Court directive, most states have failed to establish them. Where committees exist, members may be unaware or unsure of their roles. This petition aims for improved outcomes for millions through the establishment of DLCs, seeking swifter justice for PwD and their families, in line with the Constitution and the RPwD Act..Can you provide some background on the 2016 RPwD Act and its significance for the disability rights movement in India?.Dr Seema: When we started in 2015, the Act was not ratified. Even when it was, and despite having been working in the field for over two decades, we knew our own ignorance of the law. Recognizing that ignorance is an explanation, not an excuse, we felt it was crucial to address this knowledge gap. How can one acquire this knowledge if they’re unaware it exists or how to access it? The RPwD Act provides a foundation to work from, offering a valuable framework. We now know what to ask for and whom to approach. We’ve explored avenues like petitions, meetings with ministers and authorities, RTIs, media pressure and more. We are most hopeful of the judiciary. All our advocates, both at the State level and now at the Supreme Court, help us pro bono and that is the only reason we are making headway..SN: The PwD Act of 1995 brought hope for dignity, access, equity and justice, but only recognized seven categories. The National Trust Act, 1999 provided legal guardianship for specific disabilities. The Right to Education (RTE) Act aimed for inclusive education. Despite existing laws, why do PwD still fight for basic rights? Often, it’s all on paper and not in practice. Many disabilities were left out in 1995, necessitating the RPWD Act. It shifted from charity to a rights-based approach. Any movement is a fight to access rights of the citizens as enshrined in the Constitution. When that is not implemented, the need for legislation becomes necessary. It is hoped that as society evolves, better facilities for PwD will be ensured through these laws..How do you view the role of DLCs in ensuring the proper implementation of the RPwD Act at the grassroots level?.Dr Seema: Any affected party would find it easier to reach out to someone they know when in trouble. Also, the local member will be more adept with the issues in that particular place. There is much context that goes missing if we need to raise a complaint in Delhi about a situation in a small town in Kerala. Getting deeper into the issue, the cultural differences, the other issues the family/person faces and more, can be addressed better at the local level. It is not enough to just appoint a committee. Members need to be aware of their roles and the information should be publicized via all channels so that those in need can access it. We are hoping the information will be up on all social justice department (SJD) websites and published via the media as well..SN: DLCs are essential for addressing local PwD issues. While national laws apply universally, local variations present unique challenges. DLCs step in to ensure accessibility in various spaces. However, some lack familiarity with diverse disabilities and their specific needs. Involving PwDs and their families is crucial, adhering to the motto “Nothing about us without us.” Those unfamiliar with disabilities may struggle to make informed decisions. Tailoring solutions to urban and rural needs through local DLCs is more effective. They provide quicker resolution compared to state committees. Making DLC information public is vital, including their roles and contact details. DLCs should actively raise awareness and efficiently resolve grievances at the local level..The affidavits filed by the government in the matter before the Supreme Court highlight the poor status of implementation of the RPwD Act. In your opinion, what are the primary reasons for this and how can it be addressed effectively? .Dr Seema: Most of us tend to take action only when an issue directly impacts us, as we’re already dealing with our own challenges. Those who don’t experience disability firsthand shrug away from advocating for what they consider a “minority” group. This weakens the push for implementation. For instance, some states hadn’t even established rules for the RPwD Act, indicating a lack of coordinated efforts. There’s also limited collaboration across different disability groups, leading to a fragmented approach. For example, groups working on autism or visual impairment often operate independently. They’re all doing commendable work, but separately. With DLCs, we hope to consolidate local efforts and create a unified push for change..SN: There’s minimal awareness about the RPwD Act, even among PwD, who may not know how to assert their rights or seek help. This lack of knowledge extends to the general population. Furthermore, establishments often disregard the Act, as penalties for non-compliance aren't consistently enforced. Private agencies believe they're unaffected due to the emphasis on government agencies in the Act. Without audits, strict implementation is overlooked. The presence of the DLC can enhance accountability and unify stakeholders from various disabilities for a collective push towards awareness, change and implementation. Currently, different disability groups tend to advocate only for themselves nationwide..What specific outcomes or changes are you hoping to achieve through the Supreme Court petition, and how do you envision the role of DLCs in achieving these outcomes?.Dr Seema: Local pressure to implement the Act. We will finally have specific people to go to. If they are in our district, we can literally go to them as opposed to sending emails or making calls which are mostly ignored. We need to work bottom-up and not the other way round. .SN: DLCs can help provide better access for redressal of grievances in a timely manner, without waiting for responses at the state or national level..Dr Seema, how has your forum ‘Together We Can’ been involved in addressing issues lying at the intersection of mental health and disability?.Dr Seema: Mental health and disability are intertwined. My Ph.D. centered on mothers of autistic children in India, highlighting how disability impacts families and society, often straining mental health. Vulnerability arises from limited knowledge, access, skills and support. TWC empowers marginalized voices, fostering self-advocacy. Speaking out against the system is challenging. Our emphasis is on improving overall well-being, rather than fixating on labels or diagnoses. We all need varying forms of support. If there is a need, shouldn’t we do what is necessary to address it together? Isn’t that the “normal” thing to do?.Suchitra, what was the vision behind SANSKRITI?.SN: I am a parent of a 42-year-old adult with multiple disabilities. Thanks to intensive early intervention and parent training, she was in the mainstream from early on. My personal experiences prompted me to train myself through the years in India, US and UK. My first-hand observation of the lack of support to bridge the gap between special and mainstream pushed me to fight for access to rights for PwD, prompting me to start SANSKRITI..Could you share any success stories or positive developments that have occurred as a result of your advocacy and the work of Together We Can and SANSKRITI?.Dr Seema: In Kerala, we took the lead in establishing therapy center guidelines. Prominently, we supported an individual with cerebral palsy who is currently pursuing a case at the Kerala High Court to advocate for wheelchair access in theaters across the state. In another case, we were able to make headway in the issue of lack of disabled toilets in an exam center at IGNOU. It is important to note that not all cases end in success; in many instances, the affected parties face significant pressure, and the very implementation of the Act itself can serve as a barrier..SN: At SANSKRITI, we have strived to empower PwD, not just through legal proceedings, but by providing guidance to enable them to realize their rights, while also connecting them with essential resources. In some cases, we have intervened to address the harassment of students with autism and learning disabilities, advocating for their rights through letters to institutions like NIMHANS. Our work extends internationally, where we’ve helped students in the Netherlands or the UK facing adversity due to disabilities. Our mission has consistently been to create a more inclusive and supportive environment for persons with disabilities, demonstrating the transformative power of collective advocacy and education..What role do you believe organizations like Mission Accessibility can play in complementing legal efforts to dismantle barriers faced by persons with disabilities, and how can individuals contribute to this cause?.Dr Seema: The RPwD Act should prioritize accessibility, aligning with your mission. Let’s begin with schools, breaking down information into easily digestible, universally understandable content. Recognizing violations is crucial. Many fail to identify them, as they’re often normalized under themes like “gratitude” or the enduring influence of charity models. For instance, professions in the fields of mental health or disability are often hailed as “noble.” Why should other occupations be any less esteemed? Instilling the “rights” perspective through Mission Accessibility would be highly beneficial..SN: Mission Accessibility can conduct local audits in establishments like shops and banks to ensure compliance. They should run awareness campaigns on PwD rights, inclusive spaces, and transition from charity to a rights-based model. Establish support groups - inclusive of various disabilities - offering guidance and emotional support. Act as intermediaries to address accessibility needs in various settings, empowering PwD and their families to advocate for themselves and educating others for an inclusive environment. This approach is practiced by several organizations worldwide..In the event that some states continue to exhibit poor compliance with the RPwD Act despite directives from the Supreme Court, what proactive measures or strategies do you believe should be taken?.Dr Seema: I am tempted to say “fine them,” but since you ask for proactive measures, hold individuals accountable. There should be a name to a position, else nobody acts. Else it is like the quote “No snowflake in an avalanche ever feels responsible”..SN: For real change, laws need rigorous enforcement. Strict punitive measures are crucial. This involves a three-step approach outlined in the Act: public exposure, substantial fines and potential imprisonment. The Act also provides for condonement of unintentional omissions. But who decides if it is such an omission after so many years of the Act being in place?.Beyond achieving compliance with the RPwD Act 2016, what other initiatives or strategies do you believe are essential to improve the overall well-being and inclusion of persons with disabilities in India?.Dr Seema: We must prioritize education on rights, incorporating law as a mandatory subject in schools. Knowledge is crucial in empowering individuals and reducing vulnerabilities. This includes recognizing violations, knowing the necessary steps to address them, identifying sources of assistance and understanding the process. Additionally, it's essential to develop the skills to effectively apply this knowledge and confidently seek help when needed..SN: Initiate awareness campaigns at the school level, similar to efforts for abuse prevention or the Child Help Line 1098. This should encompass rights education, covering child and disability rights for safety, dignity and equity. Establish designated individuals in educational institutions and workspaces, akin to anti-ragging committees, to address inclusion concerns. It’s crucial to guarantee prompt resolution of grievances with specified timeframes for addressing the issues..This interview was conducted by Ishika Garg, a penultimate year student at NALSAR University of Law, Hyderabad and a student volunteer with Mission Accessibility.

Despite existing laws, why do persons with disabilities still fight for basic rights? Dr Seema Lal and Suchitra Narayan

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