India ratified the United Nations Convention on the Rights of Persons with Disabilities in 2007. To bring the disability law in line with this treaty, the 1995 act was replaced with the Rights of Persons with Disabilities (RPwD) Act, 2016.

This law seeks to promote the inclusion of persons with disabilities by expanding the legal definition of disability. According to the 1995 act, disability refers to “blindness, low vision, leprosy-cured, hearing impairment, locomotor disability, mental retardation, and mental illness”. The 2016 act recognises 21 disabilities, including those listed in the older law.  In addition to this, it recognises acid attack victims as persons with locomotor disabilities. It also displays a more nuanced understanding of intellectual disabilities, a category that now includes learning disabilities and autism spectrum disorder. Moreover, the law specifies disability due to chronic conditions—neurological diseases such as multiple sclerosis and Parkinson’s and blood disorders such as hemophilia, thalassemia, and sickle cell disease. Finally, the act also acknowledges individuals with multiple disabilities, such as Deafblind people.

Certain entitlements under the RPwD Act apply only to persons with benchmark disabilities, which refers to those “with not less than 40 per cent of a specified disability”. Persons with disabilities can qualify as persons with benchmark disabilities by a certifying authority, which is usually a hospital or a state- or district-level medical board.    

What is guaranteed by the RPwD Act?

Here are some provisions made by the act with respect to education, skill development and employment, healthcare and allowances, and recreation and cultural life.

Education

According to chapter 3, educational institutions funded by the government are supposed to make their campus accessible and provide the facilities that persons with disabilities require. This is in keeping with the aim of offering support “to maximise academic and social development consistent with the goal of full inclusion”. The act also mandates detecting learning disabilities in children at the earliest and taking appropriate steps to include children with learning and developmental disabilities into the classroom.

According to the act,  the local government—the panchayat or the municipality—should conduct a survey every five years to identify children with disabilities. Having this data set would help set up an adequate number of teacher training institutes. To make the classroom a more inclusive space, the act also instructs hiring teachers who are trained to work with children with intellectual disabilities; teachers with disabilities; and teachers qualified in Braille and sign language. In addition, it encourages the use of alternative forms of communication, such as sign language and Braille, so that those with speech, communication, or language-related disabilities are able to participate.

Chapter 6 lays down certain provisions for children with benchmark disabilities: free education in any government school or special school till the age of 18, free-of-cost learning materials, and scholarships. In government-run institutions for higher education, at least 5 percent of the seats are to be reserved for students with benchmark disabilities, along with a five-year relaxation on upper age limit. The act also recommends giving scholarships to students with disabilities.

Skill development and employment

Chapter 4 of the act mandates the maintenance of data on how persons with disabilities are faring in terms of skill development and employment. It states that exclusive skill training programmes with active links to the market should be developed for those with multiple disabilities or intellectual and developmental disabilities. Moreover, it notes that loans should be made available so that those with disabilities can take up vocational courses or self-employment. For example, a state sector scheme in Goa provides monthly financial assistance to those engaged in traditional occupations and businesses.

Just as in education, much of what the act directs as far as employment is concerned applies to government employment. Section 20 asks for non-discrimination in employment, and government offices are supposed to provide reasonable accommodations and a barrier-free environment so that persons with disabilities may carry out their responsibilities effectively. If a government employee becomes disabled before their tenure has expired, they need not be demoted or removed but can be shifted to another role on the same pay scale.

Section 21 states that every government establishment shall have an equal opportunity policy. To ensure greater accountability, section 22 mandates recordkeeping in all employment-related matters, including documenting information regarding those with disabilities seeking employment. These records may be inspected at any time.

As per section 33 in chapter 6, up to 4 percent of positions for any government posts are to be reserved for applicants with benchmark disabilities. While the act mentions that there should be incentives for private companies, it doesn’t explicitly lay out what these should be.

Additionally, plans for government buildings are supposed to be approved only if they are disability-friendly. The act also specifies a time period of five years within which all existing government buildings are to be retrofitted with disability-friendly infrastructure.

Healthcare and allowances

Some of the healthcare-related specifications listed in chapter 5 include the provision of free healthcare in the vicinity of persons with disabilities, barrier-free access in all parts of government and private hospitals/health centres, and priority attendance and treatment. It mentions that there should be schemes to promote healthcare and prevent the occurrence of disabilities. A relevant example is the nationwide Disease Eradication Programme that the Government of India launched in 2021 to eliminate malaria, elephantiasis (lymphatic filariasis), and kala-azar.

Other measures for prevention of disabilities are also recommended—conducting surveys, investigations, and research regarding the occurrence of disabilities and organising annual screenings for children to identify at-risk cases. The act instructs healthcare centres, primary schools, anganwadis, etc. to undertake concerted public awareness campaigns as well.

The act specifies that aids and appliances and corrective surgery may be offered for free to persons within a given income bracket. Certain states, such as Delhi and Punjab, have launched schemes that enable persons with benchmark disabilities to receive assistive devices. Disability pensions and caregiver allowance for those with high support needs are also mentioned. Recognising the extra costs that living with disabilities might entail, persons with disabilities are entitled to a 25 percent higher allowance than others under social security schemes.

Recreation and cultural life

Recognising that persons with disabilities have the right to an adequate standard of living and a cultural life, section 29 of chapter 5 states that recreational activities should be made available to them. It lays out a few provisions, such as having a disability history museum, grants and sponsorships for artists with disabilities, making art accessible to people with disabilities, the use of assistive tech, and redesigning the arts curriculum so that persons with disabilities can also participate.

What are the duties of the government?

1. Collecting information on persons with disabilities

The act has a data-oriented approach to disability, as is evidenced by the stipulations on data collection by many different agencies. For example, other than the data collection by local governments, government offices, and healthcare authorities, the act directs the National Disaster Management Authority (NDMA) to maintain a record of persons with disabilities so that their access to safety measures during emergencies can be guaranteed. The NDMA is also expected to circulate information in forms that are accessible to persons with disabilities, and their needs are to be taken care of when planning for reconstruction activities as well.

2. Enabling accessibility and inclusion

The act prescribes that all public spaces—including schools, government offices, primary healthcare centres, and public transport—be made accessible to all. It also mandates ensuring the accessibility of polling stations and any government papers or publications as well as improved access to justice, which includes facilitating the recording of testimonies of persons with disabilities.

3. Appointing officials, advisory bodies, and special courts

The act asks for the establishment of a number of government positions to ensure adherence to it. Every public institution is required to have a grievance redressal officer, for instance, and any person who feels discriminated against when applying for a position may seek redressal through this office. If this also proves unsatisfactory, they may complain to the district-level committee on disability.

A Central Advisory Board on Disability and State Advisory Boards on Disability have also been set up under the act. The members of these boards are from the ministries and departments concerned with disabilities at the central and state levels, joint secretaries from a number of departments including health and education, and disability experts—a proportion of whom must be disabled, women, and belonging to SC or ST communities. These bodies meet every six months to take stock of how far the spirit of the disability law is being preserved in different policies.

The act prescribes the appointment of a chief commissioner and state commissioners (whom the grievance redressal officers report to) for persons with disabilities. These commissioners are accorded powers similar to that of a civil court. They must promote research and see to it that the existing laws and provisions are useful for persons with disabilities, and make recommendations if they’re not. Any suggestions made by the chief or state commissioner should be acted upon within three months.

The act also instructs that a special court be established to try offences against persons with disabilities and calls for the appointment of special public prosecutors for the same.

How is the 2016 act different?

Both the 1995 and 2016 acts have provisions for data collection and recordkeeping, accessible education, healthcare, and employment, reservation, and special government offices to see to the implementation of disability law. Both acts also require regular screenings to be conducted and certain measures to be taken to prevent disabilities.

However, the 2016 act is different in a few respects.

1. Rights-based focus

The act not only guarantees inclusion and accessibility rights to persons with disabilities, but also looks at the right to enjoy art and culture and recreational activities, to live independently or with a community, and to choose one’s caregivers. These provisions are in place to give more agency to persons with disabilities.

There is also an acknowledgement of the diversity within the disability community, on grounds of gender, age, and socio-economic background. Moreover, while there is a lot of emphasis on research and data collection to promote understanding and make appropriate policies on disability, the act explicitly states that no person with disability shall be subjected to research without informed consent.

2. Tangible provisions and grievance redressal mechanisms

While the 1995 act had clauses on accessibility and inclusion, including making government buildings barrier-free and conducting regular screenings, the 2016 act makes more concrete provisions by specifying a time period within which such activities are to be undertaken.

While the 1995 act did not have explicit penalties for any offences under it and left these to the discretion of the judicial authority overseeing a particular case, the 2016 act clearly specifies what manner of fines and imprisonment should follow offences. For instance, an offender will be fined INR 10,000 for their first offence under the act, and subsequent offences will merit a fine of INR 50,000–5 lakh. Fraudulently availing benefits under the act could result in fines as well as imprisonment.

The current status

While the act requires buildings to be updated, the most recent Central Advisory Board meeting concluded that progress was slow on some fronts, such as the retrofitting of existing buildings. Budgetary allocations remain low as well. Similarly, being recognised as disabled does not always equal access to government schemes. For instance, although acid attack victims are recognised as persons with disabilities by the act, there are gaps in access to disability certificates, employment, disability support, and subsidies. Government officials are also not always sensitised to the needs of persons with disabilities, and disability pensions fall short of truly addressing the needs of those targeted by such schemes.

However, covering a greater number of disabilities is a necessary first step towards inclusion. And while mass education and sensitisation will take sustained efforts, recent judgements and guidelines by the chief commissioner, the Election Commission, and the Bombay High Court show that the concerns of persons with disabilities are being regarded with greater seriousness.

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Know more

• Read India’s national policy on persons with disabilities here.
• Read this article to learn how benevolent ableism harms persons with disabilities.
• Read this article to learn how building accessibility norms laid down by the 2016 disability law are faring.
• Read this article to learn how attitudinal barriers faced by persons with disability.

Do conversations about DEI involve acknowledging the privileges and marginalisations that we all experience because of our diverse identities? For example, a CEO who identifies as gay may have positional power because of the former identity but also face marginalisation because of the latter. Do we talk about how these multiple identities and their intersections play out in the workspace and affect what we do as well as how we respond?

These are some of the questions we grappled with at Ummeed Child Development Center as we set out on our DEI journey. Ummeed was founded in 2001 with the vision of helping children with and at risk of developmental disabilities. Over the years, we have provided direct clinical services to children and families and conducted training programmes for professionals such as doctors, therapists, teachers, and community workers.

What sparked the DEI journey?

As an organisation working on disability, we have always maintained an implicit and deep commitment to DEI in all spaces, including the workplace. When we were a small team, many aspects of the organisation’s culture were transmitted informally and through interpersonal interaction. However, our team—which includes paediatricians, therapists, school specialists, project managers, parents, community workers, and support staff—had doubled from 55 members to approximately 110 between 2016 and 2021, and we were aiming to double again over the next few years.

With a rapidly growing team and the emergence of virtual work possibilities due to the COVID-19 pandemic, we felt the need for a more formal articulation and internal dissemination of the values that the organisation and its members should embody. The younger members of the team were especially vocal about wanting the organisation to proactively espouse the values that were important to them, and this entailed efforts towards building safe spaces where they could express their diversity and achieve their potential.

The journey

The groundwork for Ummeed’s DEI journey was laid in 2021. First, the leadership team began to engage in conversations on diversity and inclusion with the assistance of a human resources consultant and coach familiar with the workings of the organisation. This helped us develop a common understanding of inclusive leadership and served as a much-needed nudge towards committing to DEI more strongly. The conversations revealed that there were issues we weren’t noticing because we didn’t know enough about DEI. Additionally, we realised that a more deliberate approach towards DEI would benefit the children, families, and trainees we work with as well.

The key focus areas for our DEI efforts were linguistic diversity, neurodiversity and disability, and gender and sexual diversity.

The first step we took was running an all-staff survey, which sought to ascertain staff members’ perceptions about DEI in the organisation. Conducted by the Samāna Centre for Gender, Policy, and Law, the survey was offered in both English and Hindi and was completed by 88 out of the 110 staff members at the time. The findings showed what the staff thought: while the senior team’s heart was in the right place, we didn’t know how to go about being truly inclusive. Based on the survey, we were able to identify the key focus areas for our DEI efforts: linguistic diversity, neurodiversity and disability, and gender and sexual diversity.

And so, in 2022, we brought on Apni Shala Foundation—a nonprofit that offers social-emotional learning programmes—as a value-aligning partner to support our DEI journey. Apni Shala’s engagement enabled us to honour the intentions that already existed within our organisation and incorporate them into systems and frameworks that would support its future journey.

Our conversations helped set systemic transformation as the goal to work towards, with personal transformation framed as the pathway to it. This was based on the understanding that systems are built by people and thus every individual has a role to play in effecting system-wide change. From the beginning, it was made clear that Ummeed’s entire leadership team would need to proactively participate in the sessions carried out by Apni Shala. This was done to ensure that the leadership team plays an active role in this learning journey and channels their positional power into bringing about equity, justice, inclusion, and belonging for all. 

Apni Shala’s intervention consisted of two phases. First, orientation sessions were conducted with all staff members. In these sessions, everyone had the opportunity to explore their personal experiences with identity, power, and marginalisation through the lens of language, neurodiversity and disability, gender and sexual orientation, and other forms of diversity. These sessions were offered for cohorts of 25–30 participants each in a language they were comfortable with.

Post the orientations, a total of 30 volunteers across all levels of the organisation participated in the next phase of the intervention: seven deep-dive training sessions on the identified focus areas. The sessions were conducted once a month for seven months at an off-site location.

There were a few key strategies that the Apni Shala team used during the deep-dive sessions. For example, in the work setting, power is situated in different places, and no honest conversation about DEI can happen without locating this power and understanding the role it plays. Apni Shala’s sessions addressed this power differential by calling it out upfront, designing norms for in- and out-of-session engagements that account for the distribution of power, forming intentional groups for conversations and group activities, and facilitating discussions from an intersectional lens.  

Another strategy that Apni Shala deployed was the use of the serial testimony protocol, in which speaking time was evenly distributed within a group, irrespective of the positions held by its constituent members. This offered a platform to individuals who are otherwise conditioned to stay quiet due to a lack of privilege. The practice was so effective in letting everyone’s concerns be heard that it has been carried forward to present-day staff meetings at Ummeed.

Apni Shala’s intervention ended in May 2023. Following this, 22 of the 30 members who participated in the deep-dive sessions volunteered to be part of groups that would look at Ummeed’s policies, processes, programmes, and systems over the next one to two years to ensure their alignment with the principles of DEI.

The roadblocks

1. Keeping the organisational piece in focus

Although the Apni Shala team was certain that fostering personal journeys would lead to an organisational overhaul, some people were uncertain about the time this would take. The Apni Shala team acknowledged their concerns, provided reassurance, and offered the space in every session to talk about what that day’s discussion might mean for Ummeed as an organisation. This helped present a clear connection between the personal transformation work being conducted and the needs of the organisation.

2. Convincing the naysayers

While most of the Ummeed team—especially those in the cohort—were onboard for the journey, there were a few who expressed surprise at the time being dedicated to these sessions and questioned what this would ultimately amount to. This was understandable given that the outcome of the work felt intangible: how does one measure and report personal transformation?

Thus, Ummeed’s leadership team took on the responsibility of re-emphasising the organisation’s commitment to DEI and sharing the ‘small wins’ that were already taking place because of the engagement. By the end of the sessions, nobody reported it as a waste of time and approximately 75 percent of the cohort signed up to use their personal transformation to help bring about organisational change.

3. Funding the exercise

Making a deliberate effort to develop strong DEI practices within the organisation is not a cost-free endeavour. Given that donors generally focus on external work and are rarely willing to fund internal capacity building, only a few long-term funders supported this initiative; the rest was covered using Ummeed’s savings. We hope that DEI is seen as an important stepping stone for building resilient organisations by funders and is considered either for standalone support or as part of programmatic funding.

4. Bringing marginalisations to the fore

The deep dives made participants more aware of their personal experiences in relation to identity and marginalisation and contributed to a growing need for internal mental health support. We had to consider, therefore, how to effectively support individuals who were navigating these transformative personal journeys. Further, there were cases where a team member’s manager was not a part of the deep-dive cohort. So, when the team member would take back their learnings to the manager, the latter was not always receptive or encouraging. The conversation about how to properly handle such challenging situations is still ongoing.

What emerged because of a deeper engagement with DEI?

Although we believe there is still more work to be done, here are a few tangible examples of what our DEI efforts have led to:

• Teams within the organisation started recruiting staff with diverse identities, including a person with visual impairment, a person with muscular dystrophy, a person with multiple disabilities, and a gender-nonconforming person.
• To ensure the integration of new team members, the human resources department has started actively checking for accommodation needs (for example, screen readers and desk adjustments) with all new staff during recruitment.
• All staff communications at the organisation are now offered in two languages: English and Hindi.
• In line with the motto “Nothing about us, without us”, self-advocates are being invited to conduct sensitisation and awareness sessions for all staff. For example, a session on blindness was conducted with the help of a visually impaired staff member from within Ummeed and a self-advocate from outside the organisation.
• Existing infrastructure is being made more accessible. For instance, the organisation has gender-neutral and wheelchair-accessible washrooms and the height of the reception desk has been lowered so that it is wheelchair-friendly and doesn’t serve as a visual barrier for the children the organisation works with.
• Job descriptions and policies are being reviewed by the organisation to ensure that they are inclusive for all.
• The organisation’s website is being designed to be bilingual and accessible (such as alt text for image descriptions, zoom-in and zoom-out features, colour change availability, and voice recognition activation).
• A process for internal mental health support for staff members is being put in place as a long-term measure.

What lies ahead?

In the near future, we hope to update our website to explicitly state our commitment to DEI. We had held off on this thus far because we wanted to first ensure that our internal culture and practices are capable of providing an inclusive and equitable environment for the entire team.

We would like Ummeed to become a place where everyone can be who they are. While this can be supported internally, the organisation needs to contend with more than just the outlook of the staff who constitute it. For example, there have been times when the children and parents who come to us have refused to see a particular therapist because they may appear a certain way. This is a societal bias that we as an organisation have to navigate, and we don’t have the answers to everything. But we don’t want to be an island either and would like our learnings (and unlearnings) to spread. In this way, there can be more spaces where each of us can be their most authentic version at all times.

*Rohit Kumar, CEO of Apni Shala, contributed to this article.

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Know more

• View this map to learn how diversity, equity, and inclusion intersect to promote belonging.
• Read this article on building a disability-friendly workspace.

Persons with disabilities are a vulnerable group and have lower access to services available to them than those without disabilities. And yet, even as the effects of climate change manifest themselves—rendering persons with disabilities more susceptible to poverty and food insecurity, and leaving them unable to be evacuated, among other things—there is a distinct lack of conversation between those working in the disability space and those working in the climate space.

I work with EnAble India, a nonprofit organisation dedicated to fostering the economic independence and dignity of persons with disabilities as well as nurturing the growth of the purple economy (a new economic vision to create equitable opportunities for all citizens, including persons with disabilities). Based on my interactions with persons with disabilities, here are some ways in which they are affected by climate change and extreme climate events:

1. Impact on physical health

One of the most visible effects of climate-induced weather events is the adverse impact on any existing health conditions that persons with disabilities might have. For example, those with certain neurological conditions can find it hard to carry out day-to-day activities during extreme heat events. Jeeja Ghosh, a disability rights activist who lives with cerebral palsy (CP), says that during extreme winters or heatwaves, the mobility of persons with CP is affected. “In winter, we tend to lose our balance. If it is too hot or humid, we sweat more than persons without CP, which is very inconvenient.”

Further, since emergencies also affect supply chains, those living with chronic health conditions may lose access to required medication. Many persons with disabilities have contacts on whom they depend to regularly deliver such medication. However, with emergencies, someone’s local chemist may have trouble both with procuring drugs at their end as well as delivering it to a person with disability.

2. Impact on independent living

Many persons with disabilities depend on assistive technologies and applications to navigate life. This includes using a map to reach somewhere, ordering food, and reading. Some of these technologies depend on internet and electricity, which means that when there’s a power loss during weather-related emergencies, people suffer. Sathya and Stallone, who work with EnAble India and are persons with vision impairment, say, “We lose electricity, and with it our ability to navigate day-to-day life. Also, in the absence of an accessible alert system, evacuation becomes very dangerous. Technology plays a big role in making us feel self-sufficient, so without it we are robbed of our independence.”

Pradip and Aney, two Deafblind students at Mumbai’s Helen Keller Institute for Deaf and Deafblind, had a similar experience in July 2006, when the city witnessed heavy rains. They, along with two other Deafblind friends, decided to go home during the rains. Assisted by Dev, their Deaf helper, the four boarded a local train but had to walk along flooded tracks when the train came to a halt. During this time, Pradip and Aney got separated. While their two friends were able to reach home with Dev’s help, Pradip and Aney found themselves stuck in floodwaters. The mobile phones they had at the time lacked accessibility features, so to get home they located and boarded a bus, which also had to stop shortly afterwards due to the rain. Finally, they decided to spend the night on the stationary bus, but at that point they were taken in by a kindly passenger who provided them shelter. With her husband’s assistance, they safely returned home the next morning.

3. Impact on livelihoods

Some of the expected effects of climate change, such as coastal flooding or heatwaves, negatively affect everyone. For example, if a coastal region is flooded, all the street vendors working in the area will have to find alternative locations to set up shop. However, the challenge is heightened for a person with disability. A wheelchair user will have to make additional efforts to find an accessible place; similarly, a blind person may need to familiarise themselves with their new surroundings. Therefore, the impact is not limited to finding and building a customer base in a new market, but also involves thinking about how to make the new place more accessible such that they can go and work there. This is a time-consuming process as well, because people usually have to do this at an individual level.

Keeping these challenges in mind, here are some recommendations for policymakers who work on designing climate change policies so that persons with disabilities aren’t left behind.   

Suggestions for policymakers

1. Tweak emergency response systems

During COVID-19, when wearing masks became compulsory, it was difficult for people from the Deaf community to lip-read. In some cases, this also affected the information they could receive from television broadcasts. This is not an isolated example. A lot of the time, during an emergency, TV channels flash helpline numbers at the bottom of the screen or have someone read them out. However, such dissemination strategies might not work for people with certain kinds of disabilities.

Building platforms that do not require internet access—approximately 70 percent of India’s population has poor connectivity and digital access—and have regional language support can help circulate necessary information. An interactive voice response system, such as the initiative launched in Tamil Nadu to detect COVID-19 based on symptoms or EnAble India’s EnAble Vaani, which functions as a community-driven social networking platform in rural India and is available in four regional languages, is one solution.

Designing without consideration for persons with disabilities will necessitate a lot of catching up at later stages. Climate change emergencies may require people to be evacuated and/or rescued, and to coordinate such efforts, impeccably designed information systems will be needed. The government is already testing emergency SMS broadcasts, but much more will have to be done. Beyond text messages, broadcasts can include audio messages and short sign language videos. Persons with disabilities and rescue teams should also be equipped with disability-specific communication tools to be used during emergencies.

On-ground search and rescue operations can only proceed in a timely manner if persons with disabilities are located quickly. In such cases, a database containing relevant information of persons with disabilities and their needs can come in handy.

For this purpose, existing grassroots networks can be leveraged. For example, EnAble India’s Garv Se centres (which help strengthen the livelihoods ecosystem for PwDs by enabling collaboration between various stakeholders) can work as a point of contact between persons with disabilities and search and rescue teams. Those part of such programmes can be trained to conduct emergency response actions, as these centres already have an established presence in certain regions and are involved with the local community of persons with disabilities.

2. Develop specialised rescue systems

As mentioned earlier, supply chains may be affected during emergencies, and for persons with disabilities who live with chronic conditions, this sometimes means not receiving medical care on time. In such situations, the emergency itself poses a smaller threat to them than their own health. So, systems need to be in place to ensure that those who require medication receive it.

In addition, rescue personnel should also be given specific training to assist persons with disabilities. For example, a person with brittle bone disease—a genetic condition in which bones are fragile and break easily—might have to be evacuated differently than someone without it. Alternate accommodations may need to be built for persons with brittle bone disease, and if such accommodations are not available, it might even be safer for such a person to stay put than to be evacuated—given how prone they may be to injury. Similarly, individuals with conditions such as anxiety or autism may require individualised assistance to safely navigate the sensory overload and chaos. So, besides varied support such as noise-cancelling headphones, they may need someone who is trained in neurodiversity.

Interestingly, apart from making care available to persons with disabilities, developing a comprehensive response and rescue system for persons with disabilities may accomplish multiple goals. It can produce a whole new range of jobs that require a specialised set of skills, and this skill set may be of use not only to those with disabilities but also those who are undergoing health complications or are otherwise similarly vulnerable. For example, think of someone who twisted their ankle the day before and has to leave a building during a fire—this person could also benefit from wheelchairs or ramps that are designed to accommodate wheelchairs.

3. Always design for inclusion

Often, persons with disabilities are an afterthought when it comes to policymaking and they are not involved in the planning and design process. Steps are taken to include persons with disabilities in policies only when it becomes clear that they have been negatively affected or ignored. This can be seen during climate emergencies but also in everyday life. 

A design that’s inclusive of persons with disabilities is great for everyone. This is because when flexibility is the norm, the design helps everyone. At EnAble India, for example, we had a programme where we worked with one of the public sector banks that employs persons with low vision and blindness as tellers (passbook operators) in rural bank branches. To help customers access their passbooks, the tellers have to read the number and manually input it into the system. However, in this case, we worked with the bank to have the passbook numbers added as barcodes. This made it possible for tellers with disabilities to read the numbers too.

Even though here persons with disabilities benefitted from the technique, bank account numbers are generally long and everyone—not just a person with disability—is bound to make errors. This means assistive technology, such as the one we used, can be advantageous to people across the board.

In addition to being included in climate policies and design, persons with disabilities should be actively given space in ‘green jobs’, which span multiple sectors and are poised to grow in the next decade. Apart from providing them more employment opportunities, this will ensure that persons with disabilities are co-creating environmental solutions that aren’t ableist and enriching climate conversations by adding an important intersectional lens.

For these changes to happen, there is a need for conscious efforts on the part of corporates, robust government policies, and support from civil society.

Jeeja Ghosh, Sathyanarayana Reddy, and Stallone Perris, who work at EnAble India, contributed to this article.

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Know more

• Read this article to understand how climate change, mental health, and disability rights are interlinked.
• Learn how climate change affects the rights of persons with disabilites.
• Read this report to learn about the status of disability inclusion in national climate plans.

One can look at the example of a Muslim Indian who carries the double identity of being an Indian and a Muslim wherever they go. Sometime ago, I was thinking of moving out of my family home due to space constraints; however, the only houses that I was shown by real estate agents were in Muslim-dominated societies or were very dingy, unkempt flats, where the owners were too focused on finding a tenant to care about identities. There was a clear refusal on all the well-ventilated and better-located societies and flats because I am a Muslim. Mine is just one of the many narratives of house-hunting failures that are frequently shared on social media.

People are subjected to state violence every day but, even in these cases, journalists and human rights activists have pointed out a clear prejudice against Muslims in recent times. Their houses have been demolished, they have suffered physical violence, and they are often at the receiving end of hate speeches. Even when they aren’t direct targets of systemic injustice, their multiply marginalised identity increases their struggle. For example, the Supreme Court verdict against the legalisation of same-sex marriages was painful for all queer/trans Indians and their allies, but perhaps it is worse for Muslim trans and queer people because a favourable judgement could have given protection to their interfaith/intercaste unions. Similarly, oppressed-caste Muslims not only bear the brunt of Islamophobia from the outside but also of casteism from within the community.

This has multifold effects on the psyche of the community:

• A Muslim person suppresses their helplessness, suffocation, and rage, which could lead to them feeling low and experiencing numbness and anxiety. In some cases, this frustration can lead to further violence against women and children who are less likely to strike back.
• Being the target of everyday violence in the form of lynching, police brutality, and orchestrated riots can lead to depression, hopelessness, disassociation, and so on.
• Another concern is the lack of opportunities to participate in political and decision-making spaces and, therefore, the internalised guilt that minorities may have of not being able to progress beyond a certain limit. For example, we see how small the number is of Muslims who are part of government bodies or are parliamentary members and judges. Many Muslims feel out of place when aspiring to break free from their predestined lives as determined by discrimination and exclusion.

No government body has specifically recognised the rise of Islamophobia and, thus, there is no record of the mental health impact of the same. In the absence of a formal state response, the question that we need to answer next is, what has been the response of India’s mental health professionals, community mental health organisations, and disaster management bodies to the plight of Muslim Indians?

Denial, stopgap solutions, and political apathy

According to a report by Keshav Desiraju India Mental Health Observatory, India’s mental health budget is 1.03 percent of the health budget, which makes the lack of political will obvious. As the report further notes, most of the money is given to two or three big hospitals and the Tele MANAS helpline (state-level toll-free counseling helplines) only recognises the most debilitating clinical illnesses—such as severe schizophrenia, depression, and OCD. Milder mental health issues (anxiety, mild depression, relationship concerns, body image and self-esteem issues, and so on), prevention, or the contribution of social realities on mental health are not given importance.

The fact that we don’t have clear data on the number of non-upper-caste Hindu providers speaks to how this identity is considered a default.

Even the mental health community has been fixated on seeing individuals in clinical vacuums, devoid of context and social realities. There are many reasons for this. First, as the French philosopher Michel Foucault identified, madness is often understood without context in order to isolate and treat the person rather than to change the system. Second, those who can go to medical school or study psychology need several social and economic privileges to access a college education. The group that forms the profession then is not representative of everyone and, therefore, tends to ignore or not think deeply about the intersections affecting marginalised people. The fact that we don’t have clear data on the number of non-upper-caste Hindu (Dalit/Muslim) providers speaks to how this identity is considered a default and not an issue worth thinking about.

After the attack on Meo Muslims in Nuh and the incident where a Railway Protection Force officer opened fire at four passengers in Maharashtra, I wrote to many psychology/psychiatry bodies such as the National Academy of Psychology, Indian Psychiatric Society, and the Google group called Indian Psychologists to take cognisance of how hatred against Muslims takes a toll on their mental health, provide guidelines for therapists to work with the vulnerable community, and publish a statement in solidarity with them. I did not get a reply from most of them, and the moderator of Indian Psychologists told me that they can’t share my e-mail among the members as the letter was not ‘neutral enough’. They said that the opinion in the letter is more likely to further hate because it is assuming a political position. I was not sure if I should feel worse about the organisations not willing to take a political stand or the apathy of the group that responded.

There have been times when the mental health community has come together to support multiply marginalised people. During the Shaheen Bagh protests, pro bono service provision was organised by well-meaning therapists and community organisations, just like there was some disaster intervention by members from the field during the Bhuj earthquakes and other tragedies. However, overall, the field is quite dormant and not organised enough to respond to these problems.

It will require the coming together of the government, mental health community, researchers, and even faith-based institutions to change this scenario.

Building a mental health ecosystem that recognises intersectional violence

Here are some steps to build a system that recognises the effect of Islamophobia on the mental health of the Muslim community and also makes proactive interventions:

1. Hiring, sensitising, and training better professionals

India doesn’t have enough mental health professionals to cater to its vast population, and thus the community functions with limited resources. Even the available professionals lack adequate training, and don’t go through proper licensing processes and quality checks.

The mental health profession in its current form fails to see social realities and respond in real time. While there are organisations addressing specific issues of inequality (gender rights, queer rights, etc.), it is optional for mental health professionals to be aware or integrated with their work, which is why they do not feel this engagement to be useful. We can learn from the good practices in the West such as the Stanford Muslim Mental Health pages on social media—run by the Muslim Mental Health and Islamic Psychology Lab—that are addressing the issues of mental health of Muslims in real time, or the work done by Lucy Johnstone and colleagues in the UK where they created the ‘power threat meaning framework’ as an alternative and more contextual understanding of mental health that centres lived experience.

2. Conducting contextual research that informs therapy 

While there is worldwide research on the impact of disparity on mental health, the unique contexts of Indian minorities’ mental health is largely missing. In recent times, there have been attempts at correcting the balance. For example, a report by Bebaak Collective (a coalition of autonomous women’s groups) investigates the physical and emotional impacts of extremist violence on Muslims and a paper written by Diane Coffey, Aashish Gupta, and Meghana Mungikar shows that caste minorities and Muslims have the worst mental health in India. However, these are still in the sociology–academia realm and have not percolated into clinical and practice literature yet. They do not, therefore, touch upon the training of therapists and psychiatrists in a large way. There is a requirement for more clinical research that looks at the variables of caste, gender and minority religion status, the mental health impact of living in India for such populations, as well as their mental health needs, and interventions need to be designed accordingly.

The most important part is that this research needs to reach students of psychology and psychiatry and professionals in the field. These studies should be included in the mental health curriculum and we also need a licensing structure in place where, in order to retain one’s license, professionals must continue education credits that help them catch up with new concepts they have not learned.

3. Collaborating with faith-based institutions

Masjids, Islamic boards, and Islamic committees within the country should recognise mental health and social disparity and address these issues at meetings and seminars. They can also help in raising funds for research, intervention, and advocacy in order to bring the lived experience of the average Muslim to the fore.

Faith-based organisations have a far wider reach for Muslims across the country.

Recently, I was invited by the Jama Masjid board in Mumbai to be part of their mental health initiative. While the conversation is still at the planning stage, it seems to be a good attempt at conducting a very important collective dialogue. Faith-based organisations like these have a far wider reach for Muslims across the country. The family counseling centre run by Jama Masjid is an excellent initiative to look at domestic disputes and the need for psychological services, and the Dawa Dua project that functions from within dargahs to provide psychosocial services in cooperation with the shrine mujawars (priests) is another great idea.

4. Making Muslims in India feel included

Dr Akhtar suggests that minorities can be made to feel a part of society by restoring their civil rights, recognising the fact that minority cultures have their own vitalities, and making sure that they are part of the social iconography—statues, street names, currency, holidays, and so on. We can see the opposite happening, with Muslim names and histories being erased by the current government in India.

People from the minority communities, including social and cultural activists and media professionals, can play an important part in helping the community reclaim its place in society. While feelings of victimisation are understandable, they can take cues from reformers such as Fatima Sheikh, the Phules, and Dr Ambedkar to educate, agitate, and organise. There have been some laudable attempts by civil society organisations such as Bebaak Collective, podcasts like ‘Main Bhi Muslim’, and virtual communities like The Queer Muslim Project (QMP). For example, QMP works for the visibility of queer Muslims, and routinely highlights the conflict queer Muslims face while balancing their religious/spiritual identity and sexual/gender identity.

Reinventing India’s shared social fabric

In India’s current political landscape, it is possible that no one—neither the majority nor the minority—is feeling well integrated. We have a lot of unprocessed trauma from pillaging rulers and especially from the British times, famines and wars, and, most importantly, the Partition. Instead of healing these wounds, those with vested interests keep poking at them to rip apart collective unity. 

We need to bring back concern for others and thoughtfulness in how our actions impact others, especially if they are from a marginalised background. Apart from system changes within the mental health space, perhaps the well-being of minorities and the country as a whole depends on the reinvention of a common shared fabric of decency and on us being able to talk to and care for each other.

This article was updated on November 14, 2023, to change India Mental Health Observatory to Keshav Desiraju India Mental Health Observatory.

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Know more

• Read this transcript of a podcast on the future of mental health for the Muslim community.
• Read this article on how mental healthcare is failing marginalised populations.
• Read this article calling for the mental health community to take cognisance of the social suffering of Muslims.

Unfortunately, the language and expressions that define dominant narratives around the crisis are mostly Western-centric and out of touch with the lived realities of marginalised groups in the Global South. One dominant narrative, for instance, emphasises that climate change will impact future generations and young people throughout their lifetime. However, this viewpoint fails to acknowledge the immediate impact of the climate crisis on marginalised communities at the crossroads of gender, caste, and class whose lives are already being impacted. 

India, which is the seventh-most vulnerable country with respect to climate extremes, serves as a prime example. According to an analysis by the Council on Energy, Environment and Water (CEEW), three out of four districts in India are extreme climate event hotspots exhibiting erratic rainfall, sea-level rise, and increased frequency and intensity of droughts, floods, and heatwaves. The poor and marginalised, especially women, bear a disproportionate burden of the climate crisis. A recent report by Climate Action Network South Asia concluded that climate-induced displacement and migration in India resulted in women having to spend at least 12–14 additional hours doing farmland work and household chores.

This highlights the pressing need to question who gets to shape the current climate narratives. By excluding marginalised voices—whether at the global or the national scale—current solutions are isolating a large section of the population from participating in climate action. Additionally, they are preventing us from leveraging the wealth of traditional wisdom that can help create sustainable and long-lasting impact. This current approach to address the crisis can result in half-baked solutions and maladaptation.

Climate narratives by the community, for the community

Narratives on climate change must focus on people at the forefront of this crisis, such as those belonging to indigenous groups, waste pickers, and frontline health workers. And as we saw from Padmini’s example, communities themselves are best suited to create and drive narratives that reflect their realities, needs, and demands.

To understand how communities, especially women, residing in rural or remote areas—far from the corridors of policy and the ivory towers of academia—relate to the climate crisis, ASAR, in collaboration with Baimanus, an organisation that trains people from underprivileged communities to be reporters, launched Project Dharitri earlier in 2023. As part of the programme, we’ve been working with 10 women journalists across Maharashtra who are reporting from ground zero—their districts—on the unfolding climate crisis in their districts. These women are community leaders and belong to groups that are vulnerable to climate change. The objective of the project is threefold:

1. To have stories on climate that are on women, by women, and for women.
2. To enable these women journalists to develop breakthrough narratives on climate for the media.
3. To use these narratives to create a collective of aware and engaged women in panchayats and wards.

Here are some examples of the narrative tools that these women journalists have used to communicate how they view the climate crisis and its impact on their communities:

Warli art

Ashwini Sutar from the Warli community in Palghar district uses Warli art, a form of tribal art, to report on stories of climate change. Below is one of her artworks, which represents the issue of climate change in a way she believes will make it more relatable for communities like her own.

In this artwork, Ashwini showcases how climate change is a human issue, and how it impacts the lives and livelihoods of several communities. Her painting illustrates how unseasonal rainfall results in both droughts and floods, putting human life and biodiversity at risk. The changing climate impacts food, housing, and livelihoods, and increases the drudgery of women’s work. It also increases vulnerabilities, resulting in health issues, debts, suicide, and loss of life. In the artwork, Ashwini shows how climate change is an issue primarily rooted in extractive economies that are polluting the air and rivers, and poisoning fish that is a staple diet of many. 

However, in all this gloom, Ashwini also paints hope—a solution to climate change that brings communities together in solidarity, where everyone cares for one another and nurtures life of all kinds.

Stories of the sea

While Ashwini’s narrative is closely linked with the Warli culture of her community, Jahnavi, another woman journalist and community leader from Ratnagiri district in southwestern Maharashtra, links climate change to the livelihood of her community in her stories.

In this region, fishing serves as the primary source of livelihood. However, unpredictable weather and frequent natural disasters have reduced the number of fishing days. Additionally, ocean acidification is resulting in poor quality of fish that is being caught. This severely affects the earnings of women, who play a pivotal role in the value chain by cleaning and processing the fish. They are left with no choice but to seek alternative livelihoods as daily wage labourers.

Here’s an excerpt from one of her stories:

Some of the fish species are totally wiped away thus causing a direct threat to the livelihoods of over 3.15 lakh fisherfolks in Maharashtra of which 70% are women. The difficulty in finding a good catch has added the burden and drudgery of fisherfolks and particularly women as they spend longer hours and tougher days in the sea. Since the income has drastically reduced, merely relying on fishing is not possible and many women have now quit the business and have started working in low paying, informal occupations such as construction work, labour, etc. Those who are still engaged in fishing and allied work are making do with lower incomes and are facing resultant hardships.

Jahnavi’s stories on climate change are connected with the sea and the lives of communities living in coastal areas, where the crisis is wreaking havoc, and she strongly believes that their voices need to be amplified.

How organisations working on climate change can step in

These examples highlight how communities can use traditional tools and mediums to communicate how the crisis is unfolding around them. This can help make the climate narrative more relatable to marginalised communities and reflective of their immediate realities. Prioritising the experiences of those most affected by the climate crisis can help develop solutions that address their specific needs and challenges. Additionally, such local narratives have the potential to turn people from passive spectators to active stakeholders in the issue.

This does not imply that we completely do away with the climate jargon that is used globally. Rather, the aim is to encourage all of us to think creatively about climate solutions, about bringing to the forefront experiences of those communities whose collective wisdom and imagination are critical to solving the climate crisis in an effective and sustainable manner.

One of our biggest challenges—but also opportunities—as organisations working on climate change is to come together to make space for the language, forms of expression, and stories used by women like Padmini, Ashwini, and many others across the country. If we can shift the language and expressions to create new and nuanced vocabularies, we will be able to make the current climate approach more community-focused.

Here are some ways for organisations working on climate change to actively make space for local narratives.

1. Listen to what local communities have to say

Climate change is a complex challenge that is exacerbating existing inequalities, such as those related to gender, caste, class, and sexuality. Intentionally listening to the experiences of local communities that face multiple layers of marginalisation due to their socio-economic background—and now due to the intensifying climate crisis—is a crucial first step in reshaping the climate narrative. One way to do this is by spending time with these communities to truly understand how they are being affected by the changing climate. Another vital step is creating safe spaces for them to openly share their experiences, opinions, and thoughts. Organisations can play a pivotal role in facilitating these conversations, helping shift the narrative and make it more inclusive and equitable.

2. Take it to the policy rooms

One major reason for the gap between how communities understand climate change and the discussions happening in policy rooms is the absence of these communities, their perspectives, and real-life experiences in decision-making and negotiation meetings. Organisations, particularly those actively working at the grassroots, must play a vital role in bridging this gap and ensure that the voices and concerns of these communities are heard and considered. This will also help visibilise community-driven solutions, which are currently missing from present climate policies. Project Dharitri, for instance, is closing the divide at the district-level between the community and policymakers through the stories of women journalists. These stories will appear on local media platforms and bring voices from the community to the forefront.

3. Amplify local narratives

Diverse communities have different cultural traditions that indicate an intuitive awareness of climate change and have their own way of articulating it. The Adivasi groups of Koraput are aware of climate change due to the limited availability of certain forest foods, which affects their annual festivals—this directly impacts their culture and way of life. Organisations working on climate change, therefore, must look at documenting local narratives in a way that allows community members to spread awareness within their own networks. At the same time, while these stories carry local relevance, the manner in which they are documented should enable community members to share their experiences with those outside the community as well. This could be done through text, video, and traditional art formats, as demonstrated by the women journalists of Project Dharitri. Another powerful way of sharing this could be via the oral tradition of storytelling at community meetings, gram sabhas, and even self-help group meetings.

These narratives must be available in different languages and formats. Additionally, this material will have to be contextual and relatable so that climate change can be better linked to people’s daily lives, livelihoods, health, and cultures. Organisations must also actively collaborate with other stakeholders such as media houses, the larger development sector ecosystem, and academia to ensure that these experiential and cultural stories are heard and amplified.

There is an urgency for a new vocabulary in the form of local languages and art that grounds climate change and its impacts in the imagination, realities, and knowledge of people who are facing the disproportionate burden of this crisis. Organisations working on climate change must play an active role in developing and highlighting these narratives.

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Know more

• Read this gender and climate framework to learn more about developing local climate narratives.
• Read this story about how women in Odisha’s Koraput district are experiencing and talking about the impacts of climate change.
• Read this article to understand how simplifying climate communication is crucial to enable climate action.

One such social protection measure is the Indira Gandhi National Disability Pension Scheme (IGNDPS), which was introduced in 2009 to provide disability pensions of INR 300 to PwDs in the 18–79 age group and INR 500 for those who are 80 years or older. To be eligible for the scheme, an individual must have severe (80 percent or more) or multiple disabilities and must fall below the poverty line. Despite enforcing strict eligibility criteria and providing low pensions to PwDs, the scheme received a reduced budgetary allocation in the Union Budget 2023–24. This reduction has been attributed to the constantly rising underutilisation of the resources allocated to states/UTs for implementing the scheme.

The eligibility criteria of the IGNDPS prevent more than 95 percent of PwDs from accessing its benefits. An analysis of the Survey of Persons with Disabilities (NSS 76th Round) reveals that only 5 percent of PwDs meet the eligibility criteria of the scheme. This finding is even more alarming when we consider that the data used in the survey is from the 2011 census, which has been notorious for undercounting PwDs.

Why IGNDPS does not work

It is imperative to highlight some of the gaps in the scheme to understand why its success has been limited.

1. Outdated and exclusionary eligibility criteria

The logic of restricting benefits based on the severity or number of disabilities follows from the Persons with Disabilities Act of 1995. Even though the more recent RPwD Act offers special provisions for people with benchmark disabilities (40 percent), the IGNDPS has not been updated to reflect this. The scheme further excludes children with disabilities, and this presents financial challenges for the parents of these children.

As per official sources, the IGNDPS still uses the below poverty line (BPL) census of 2002 to identify which PwDs are poor enough to avail of its benefits. The guidelines of the National Social Assistance Programme (NSAP) hold states/UTs responsible for maintaining the eligible beneficiary database. A recent audit of the NSAP by the Comptroller and Auditor General of India highlights that only 11 of 35 states and UTs have maintained BPL lists used for identification of beneficiaries. Out of these 11, only Kerala and Haryana had prepared an eligible beneficiaries database. Although the Socio-Economic Caste Census (SECC) of 2011 has replaced the old BPL lists in several welfare schemes for better identification of beneficiaries across welfare schemes, the IGNDPS has not adopted it. Following the old BPL list has led to the exclusion of 84 percent of the PwDs with severe disabilities who fall in the lowest income decile.

2. Inadequate compensation

The central government provides INR 300 as a monthly pension, recommending states contribute an equivalent amount to provide decent assistance to PwDs in line with the RPwD Act. Due to the lack of a mandate, the amount reaching beneficiaries is highly skewed across states—ranging from INR 300 in Bihar to INR 3,000 in Andhra Pradesh.

As per the RPwD Act, the pension for individuals with disabilities should be at least 25 percent more than comparable schemes for others, accounting for the extra costs related to disability. Despite providing higher pension amounts compared to the INR 200 per month offered by similar schemes for widows/the elderly, it remains inadequate at covering the extra costs of disability.

3. Strict document requirements

To avail of the scheme, an individual must possess the correct documents, including an Aadhaar card and a disability certificate issued by the state. But acquiring an Aadhaar card can be a harrowing experience for PwDs, as Aadhaar enrolment centres often lack wheelchair accessibility and an unsympathetic attitude from the staff results in repeated visits to the centres.

The NSS Survey on Persons with Disabilities (2017–18) indicates that only 28.8 percent of PwDs possess a state-issued disability certificate, which is a prerequisite for accessing the pension. Furthermore, the mandate for a Unique Disability Identity (UDID) to access disability schemes introduces the potential for more exclusion, given the array of difficulties associated with securing a UDID.

4. Lack of social audit of the scheme

In its NSAP guidelines, the Ministry of Rural Development (MRD) mentioned that states should earmark at least 0.5 percent of their total budgetary allocation for social audits of schemes. The social audit of schemes is undertaken by potential beneficiaries and is recognised as crucial to maintaining a scheme’s transparency and accountability. In 2018, a letter issued by the MRD stated that states/UTs had not been conducting social audits.

Social audit guidelines and a standard operating procedure were thus prepared in order to launch a pilot to address the failure to audit across 22 states. The reports from this pilot social audit in FY 2021–22 highlighted common implementation gaps across states, including limited awareness, administrative loopholes, and a lack of effective beneficiary targeting as well as administrative data.

Strengthening the IGNDPS

Based on these gaps, the following recommendations can be considered to ensure that the scheme is more beneficial to PwDs.

• Relaxing the scheme’s eligibility criteria: The scheme should be modified to make the eligibility criteria inclusive of children with disabilities and extend disability pension to all persons with benchmark disability (40 percent disability).

• Increasing the disability pension amount: The pension amount under IGNDPS was last updated in 2012 to INR 300 per month from INR 200 per month. The current disability pension is abysmally low and needs to be adjusted regularly based on the Consumer Price Index. Further, states should be mandated to (at least) match the central government’s contribution.

• Changing the approach to identifying beneficiaries: Various expert committees in the past have recommended that the MRD should use data from the SECC, rather than the BPL lists, to identify beneficiaries. However, doing this would still leave out several eligible PwDs as the SECC too has now become outdated. To address this, the government plans to identify beneficiaries through the National Social Registry. This database will use Aadhaar cards to integrate religion, caste, income, property, education, marital status, employment, disability, and family tree data of every citizen.  

• Using accurate data: Currently, the 2011 census and Survey of Persons with Disabilities are the two main sources of the prevalence of disability in India. It has been reported that 2.2 percent of the Indian population experience disability. This figure is contested as it grossly underestimates the number of PwDs in India. Further, there is a dearth of disability-specific disaggregated data across sectors such as health, education, poverty alleviation, employment, and justice. Therefore, reliable data should be collected to ensure equitable participation of PwDs as envisaged under the scheme. Additionally, as specified in the NSAP guidelines, states must ensure that all the local authorities are maintaining correct records of beneficiaries and funds. This data should then be uploaded to the NSAP-MIS portal of the MRD.

• Streamlining the documentation process: Difficulty in accessing Aadhaar and the poor penetration of disability certificates should not be a roadblock to accessing the scheme. The scheme should therefore serve deserving beneficiaries without any documentation mandates until it achieves 100 percent coverage. Furthermore, various states have implemented the scheme based on different eligibility criteria. For instance, Rajasthan has reduced the severity of disability to 40 percent, whereas Delhi and Kerala use an annual income criterion of below INR 1,00,000 to identify eligible PwDs. This lack of uniformity leaves out beneficiaries and prevents statewise comparisons of the scheme’s implementation.

• Regularising the social audit process: The MRD should ensure timely appropriation of budgetary costs to enable states to undertake the social audit. The ministry should also push all the states to conduct social audits periodically and make audit reports public to further bolster accountability.

Being the only national-level financial assistance programme for PwDs, the disability pension scheme is of immense significance. Thus, it is essential to focus on its implementation and ensure effective and successful disbursements. Doing so will also uphold the value of leaving no one behind as enshrined in the Sustainable Development Goals.

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Know more

• Read the policy memo that this article draws from.
• Learn about the continually declining budget allocations for disability welfare in India.

Data from the NFHS—one of the largest household surveys in the world—is crucial for effective policy interventions for people with disability and helps design better welfare programmes.

It allows researchers to determine critical information about people with disabilities such as their geographical distribution, their ages, genders and educational levels.

It also makes it possible to generate insights into otherwise under-researched areas such as disability and HIV/AIDS, disability and sexual life, disability, and gender, disability and maternity, disability and general well-being.

Several of the data points collected under the NFHS are not covered by other surveys or databases. For instance, no other surveys in India can provide data on tuberculosis. In the absence of disability disaggregation under the NFHS, there is no way of finding out how many persons with disabilities have tuberculosis, hepatitis B or C.

The NFHS was first conducted in 1992 to collect data on health and nutrition and family planning with a focus on women and children. Questions pertaining to disability were first included in the NFHS-5 conducted between 2019 and 2021.

To give a sense of intersectional data that can be unlocked from it, areas covered under the men’s and women’s questionnaires of NFHS-5 are featured in figures 1 and 2 below:

Such data is crucial for designing better services. In addition, since the survey is being conducted once in three years, disability questions make it possible to track the progress of health indicators of people with disabilities.

Even though the NFHS-5 survey contained questions about disability, all the data was not released. The main reason was that disability data collected through the survey was not accurate and might result in wrong estimates. Another reason was that surveyors are not equipped to check medical certificates and record disability. Besides, understanding the disability question was cited to be a challenge in itself.

But is it really a challenge? Are there alternate opportunities to capture disability numbers?

Three questions numbered 31, 32, and 33 pertain to disability in NFHS-5, as can be seen from Figure 3:

The questions are simple and uncomplicated. Further, the process under NFHS-5 did not entail the checking of disability certificates. The identification of disability was through self-reporting based on the definitions of disabilities. These definitions, as provided in the interviewer’s manual, are as follows, in Figure 4:

The interviewer’s manual for NFHS-5 guides the interviewers to approach the questions with sensitivity, and suggests that the interviewer initiate the conversation by telling respondents how disability data can help the government in planning for their welfare. However, the definitions on which the self-reporting is done have some limitations.

First, the definitions are oriented toward the “medical model” of disability disregarding the “social model” and functional limitations. Second, though the definitions are not too complicated, they can lead to confusion if the interviewer is not adequately trained. Third, there is a chance that respondents find it difficult to comprehend the definitions in responding to the questions.

Such confusion can lead either to over-reporting or under-reporting of disabilities. Thus, the apprehension about inaccurate data cannot be ruled out. Despite these limitations of the data collection process, dropping disability from NFHS-6 is a lost opportunity.

Are there any channels for disability data collection in health?

With disability questions being dropped from the NFHS-6, discussing potential options to generate similar disability data is crucial. Here, three potential channels could be: a) developing a separate health survey specifically for persons with disabilities b) modifying existing disability-specific surveys to include data points that were originally covered through NFHS-5 and c) including disability data as part of other existing general data collection initiatives.

The first channel, though ideal, presents challenges. Designing a survey from scratch involves intensive inputs including technical resources to design the survey and train the data collectors, pilots and iterative steps toward improving the survey, and a long-drawn process to obtain executive and administrative approvals and budgets.

Further, the approach where data on persons with disabilities is collected separately makes it difficult to draw comparative inferences between the segment of the population that has disabilities and the segment that does not. This might become a problem especially when it comes to designing welfare policies meant for the general population that also need to cater to the population living with disabilities.

With respect to the second option, one must take into account that no other existing survey has a sample size or health data coverage as extensive as the NFHS. The sample for NFHS-5 was 7,24,115 women and 1,01,839 men in 636,699 households. In the upcoming NFHS-6, the number of interviews is expected to be about 7,45,488 women and 1,19,501 men in 670,032 households.

Most of the variables in NFHS are unique. The National Sample Survey’s Persons with Disabilities Survey, which is the only disability-specific survey in India, includes a very limited number of questions on the health and well-being indicators covered by the NFHS. Though the National Sample Survey questionnaire could be extended to include a health module, it will be a resource-intensive exercise. Besides, the National Sample Survey for persons with disability is not conducted at specified time intervals.

The last option is an opportunity to strengthen the quality of disability data in general, and not just at the intersection of disability and health. This could be through any data collection initiative, even pooling programme-specific data collection by civil society initiatives or scheme-implementation data by the government.

But data in disability is known to be a challenge. To address this, the draft disability policy released in 2022 envisaged the Unique Disability ID project as an opportunity to develop a national-level database on people with disability. This database when linked with all service delivery mechanisms could provide real-time data on Persons with Disability.

Though the Unique Disability ID promises to become the backbone of the disability data ecosystem in India, persons with disabilities are facing challenges in availing of the cards owing to a lack of awareness, confusion around the process, administrative delays, and backlogs.

Dropping the disability question will impede the scope of evidence-based disability-related policy decisions. It will also limit India’s ability to track progress toward the Sustainable Development Goals and achievement of the “no-person left behind” goal by 2030.

Though there is no straightforward, short-term path to overcoming the data gap resulting from the dropping of NFHS disability questions, evolving dependable mechanisms for disability data collection and disaggregation will remain integral to fostering meaningful inclusion for persons with disabilities.

This article was originally published on Scroll.in.

In a bid to address these gaps, Women’s World Banking (WWB) has partnered with relevant stakeholders in the financial sector to bring women-centred products, services, and policies to the market. At WWB’s Making Finance Work For Women Summit, IDR interviewed Mary Ellen Iskendarian, president and CEO of WWB, and Kalpana Ajayan, WWB’s regional head for South Asia, on the subject.

In this interview, Mary Ellen and Kalpana discuss investments that have been made towards enabling women’s financial inclusion, the gaps that still remain, and the challenges in developing financial products and services while working with partners worldwide to advance women’s economic empowerment. They also touch upon the inextricable link between digital literacy and financial inclusion in a world where digital financial services have become ubiquitous. 

How does India compare with other emerging markets when it comes to financial inclusion for women?

Mary Ellen: One of the biggest concerns we have in India that we don’t quite see to the same extent in other countries is the lingering social and cultural norms around owning smartphones. It’s a real issue here. That said, the investment that India has made in its digital public infrastructure—the Aadhaar system, PMJDY accounts, and UPI system—is head and shoulders above where other emerging markets are at the moment. I am thrilled that India is eager to export some of this work to other countries, with the G20 presidency really shining a light on how much tremendous work has been done here. It also shows what that kind of upfront investment can do and what kind of dividends it can pay down the line.

Speaking of investments India has made on this front, what else do you think needs to be done in the next five years to improve access to finance for women?

Mary Ellen: The PMJDY is a great innovation, but we at WWB have observed that although women in India open PMJDY accounts, their accounts tend to remain dormant. This suggests that the product either isn’t relevant to them or that they are not convinced of its relevance to their lives. So, I think that it will be critical for any infrastructure or product development that is rolled out in India over the next five years to take a step back and think, “How can we take women’s needs and the barriers women face into consideration before we launch?” Our work here in the last few years has been very focused on that issue of engagement with the PMJDY account. We, therefore, rolled out a savings product called Jan Dhan Plus alongside Bank of Baroda, and we’ve taken this to Indian Bank and Union Bank. We’re trying to incentivise women to save and to build savings behaviour. And once they’ve engaged with this account, there’s an opportunity then to cross-sell other products.

Bringing more women into the workforce of the financial sector is a great investment that India has begun.

One of the other things that I think parts of India are doing in a very exciting way is driving more women business correspondents (BCs) and women agents. The implementation of the BC Sakhi programme, which seeks to promote digital banking through women banking correspondents, has resulted in more women signing up for accounts, and a higher rate of conversion from signing up to actually depositing money. So, I think bringing more women into the workforce of the financial sector is another great investment that India has begun and should enhance in the next five years.

Kalpana: I also think that women’s access to credit is something that really needs to be addressed. And we’ve been working with the apex credit bodies in this country for this. In fact, Mary Ellen and I met the chairman of the Small Industries Development Bank of India (SIDBI) recently, and they expressed a willingness to offer loans to women entrepreneurs at rates that are significantly lower than commercial rates. But since most women in India don’t have a credit footprint, they’re rendered invisible to the institutions seeking to enable their access to credit. So how do you really make these women visible? I think this is what we must solve in the near future.

Mary Ellen: I think it’s worth doubling down on that, as many people may not understand this invisibility. For example, the self-help group (SHG) is an extraordinary institution, but often only one member of the group has any identification, which is actually just used for naming the group. So, she’s not even necessarily identified as the borrower. Therefore, the idea we discussed with SIDBI involves ensuring that the loans and repayment track records of these invisible women, who have been borrowing and have great repayment records, get registered with credit bureaus.

Research shows that barriers to finance for women have been as much about the ecosystem (market, social norms, etc.) as about lending institutions providing capital. How do you suggest we address this? And who needs to be working on it?

Kalpana: There is space for nonprofits engaged with women, financial institutions, and policymakers to work within their arenas to facilitate meaningful change. There is a definitive role for everybody in the ecosystem, including the husbands. For example, if there’s a phone in the household, does the wife get access to that phone? There are multiple ways in which you can make women participate. The Open Network for Digital Commerce (ONDC) is a great platform, and it can really help nano and micro-entrepreneurs by enabling their linkage to markets. For example, how will a small pickle-maker in the interior of Maharashtra get their product out? That’s where the ONDC can play a significant role. But how do you even bring her on board? How do you build visibility and awareness about an initiative such as the ONDC? I think there are many stakeholders in the ecosystem that need to work on it.

Mary Ellen, you’ve previously spoken about the improved access to smartphones for women. I was wondering if you could speak about the intersection of digital literacy and financial inclusion?

Mary Ellen: There isn’t just an intersection any more. The delivery of financial services to the last mile at an affordable price is going to be digital. So, it’s absolutely essential that women are confident in their use of the phone, and it’s very much the centrepiece of every product roll-out we conduct. We’ve done quite a bit of work on what we’re calling ‘digital financial capabilities’, because this isn’t just about understanding which buttons to press or being numerate, but really feeling a sense of confidence and ownership. The reason we fight so hard for financial inclusion is that we see it as fundamental to women’s empowerment. But if they’re not empowered to use the technology that will enable this inclusion, it’ll be a great loss.

Kalpana: Our definition of digital financial capabilities includes not just a skill and knowledge component, but also an attitude component. And that attitude is trust and confidence. So, for me, it’s not just about having the skill and knowledge to operate within the financial system, but you need to be confident and trust the system to meaningfully engage with the system.

What are some models or approaches that haven’t worked in emerging markets like India? And what are some that have seen more success? What can we learn from those?

Kalpana: A gap that still remains is the urban market. We’ve tried several initiatives in the urban market for low-income women, but we’ve realised that interventions such as educational camps—which are ideal for rural markets—don’t work in urban ones. This is because women in urban areas simply don’t have the time to assemble at a place and listen to people speak about financial literacy and related issues.

When we moved to rural regions from the three urban centres of Delhi, Mumbai, and Chennai—where we piloted the Jan Dhan Plus programme—we had to unlearn these things and introduce strategies that are relevant to the rural segment.

Mary Ellen: I won’t have as clean an answer as Kalpana, but there’s one thing that’s the greatest source of frustration for me, which I’m so determined to fight. So, WWB believes very strongly in the concept of customer lifetime value. This means that when we introduce a product to a financial service provider, we indicate how it would make this new client or a completely dormant client (as in the case of Jan Dhan Plus) profitable over a long time. When we present that kind of data to substantiate a pure bottom-line-driven argument but are met with rejection from the management of an organisation, I just feel like screaming.

When we have an MD or a CEO who’s really committed to the cause, they’ll push the initiative through.

I think it’s important to find a strategy that tips the balance, whether it’s being able to show greater risk mitigation through a product or present the issue as one that the senior leadership can adopt as a personal cause. The latter has been a very successful strategy for us, because when we have an MD or a CEO who’s really committed to the cause, they’ll push the initiative through. But this can be a source of immense frustration. And we’ve experienced this in all the regions that we work in.

But there’s also hope. For instance, there was a digital wallet that we delivered for a bank in another South Asian market. Again, we were able to demonstrate a customer lifetime value, but management broke our hearts and decided not to take it forward. But not even a year later, a bank in another country approached us with the agenda to implement something similar, and this bank is now doing gangbusters with literally the same model, with some local amendments to the product.

The economic crisis triggered by the pandemic has naturally had a devastating impact on women’s financial inclusion. How important is it to keep that at the centre as we rebuild?

Mary Ellen: We’re missing a big part of the picture if we only focus on women as being vulnerable or having suffered during the crisis. We must think of them as part of the solution for how we’re going to get ourselves out of this particular crisis. What I have observed in every country that we’ve worked in is that when we design products keeping women in mind, which usually means making something as easy to understand and quick as possible, men love them too. You can’t say the reverse. When there’s a product that’s designed for men, it just doesn’t work the other way. So it’s a worthwhile investment when you design for women, as you often reach both men and women.

Kalpana: I’m actually reminded of a quote I love from Mary Ellen’s book, which I think explains what financial inclusion is all about: “It’s not just a good thing to do, it’s the right thing to do.” This hits at the heart of what you described, what we call ‘women-centric design’. Pushing the women’s agenda is not only a social good, but it also makes business sense. If you design for her, it works for both.

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Know more

• Learn about how banks can enable women’s financial inclusion.
• Read this report on enabling women’s entrepreneurship through philanthropy.

Most educators in the field agree and point to the fact that in the absence of any concrete guidelines to help customise teaching or evaluation methods for different learning needs, children are usually promoted to the next class. This is an even larger issue when CwSN have to study alongside neurotypical students.  

Is there an alternate approach for vocational education for CwSN?

If CwSN have to be provided with better market-linked learning through vocational curriculums then there is a need to focus on how it is currently being delivered in the country. Here are a few key areas that need attention:

1. Pedagogy and curriculum

Identifying and adopting the right approach in vocational education for CwSN is critical. This can include introducing new methods for learning and teaching such as:

Multi-skill foundation course: A multi-skill foundation course comprises various subjects or units and focuses on hands-on learning. The subjects include workshop and engineering techniques, energy and environment, gardening, nursery and agriculture techniques, food processing techniques, and personal health and hygiene. Through an experiential learning-based pedagogy, the multi-skill foundation course aims to promote employability and increase the uptake of vocational skills among students. At present, the course is offered to students in classes 9 and 10 across schools in India. 

As Sunanda Mane, the managing director of Lend-A-Hand India, points out, this course not only helps students understand what they want to pursue in higher classes but also provides an opportunity for teachers to assess students’ capabilities and interests in different areas and recommend subjects for classes 11 and 12. When it comes to CwSN, this can prove extremely useful as it will allow students and teachers to work together and hand-pick subjects that the students can pursue later. However, there is a need to further optimise this course for CwSN. This will require mapping capabilities for different disabilities and accordingly building the capacity of teachers to cater to the children’s needs.

Multidisciplinary approach: Every child with special needs requires a uniquely designed learning programme that may include assistive devices such as Braille or speech output devices, mobility aids, or therapeutic interventions such as physical or speech therapy. A multidisciplinary approach has been accepted as a valuable intervention for CwSN for effective inclusive education. It involves drawing from multiple disciplines and teaching methodologies, wherein students can choose what subjects they want to study and how they want to study them. It provides flexibility and helps them gain perspective and knowledge in different ways. For CwSN, a multidisciplinary approach allows for teaching and learning methodologies to be designed according to their needs. For example, in IT classes, an autistic or hearing-impaired child might grasp chapters at a different speed.  A child may be quick to understand a chapter on website design but may find it difficult to get through chapters on coding. Therefore, the selection of chapters and the props, assistive devices, and lab would require customisation.

Meera Shenoy, managing director of Youth4Jobs, an organisation that is working on providing job opportunities for PwDs, further elaborates on the importance of a multidisciplinary approach. “Schools are the building blocks of life, more so for a vulnerable segment like CwSN. The complexity lies in the fact that there are 21 disabilities recognised by the PwD Act, many of which require a specialised approach, therapeutic interventions, and assistive technology. Providing multidisciplinary options needs cohesive collaboration between the school’s administration, teachers, and parents, which will help such children in progressively improving adoption of trade and life skills,” she says.

However, adopting a multidisciplinary approach or incorporating a multi-skill foundation course in the curriculum may not be feasible for all schools, especially government schools with limited resources and issues such as teacher shortages, lack of infrastructure, or even inflexibility in customising teaching lessons and subjects according to the needs of the children due to the volume of work. Support from other key stakeholders, including the government—in terms of policy mandates—and industry players—in terms of an employment pathways—is critical in making vocational learning and teaching methodologies more inclusive across states and schools.

2. Policy considerations and frameworks

A comprehensive framework outlining the adoption of more inclusive teaching methodologies by teachers and school boards is imperative to help develop curriculums that cater to the needs of CwSN for vocational learning. This can include:

Creating detailed policy education frameworks for CwSN: There is a need for detailed frameworks that cater specifically to CwSN. For example, the National Credit Framework recommends learning hours–based credit systems where students will have the flexibility to choose subjects from science, arts, and other disciplines. This can prove especially beneficial for CwSN, who may learn different subjects at a different pace. However, the framework makes no special mention of CwSN when it comes to flexible learning modules. Similarly, the NCF, which was released for consultation in 2022, provides a pathway to realise the vision of the NEP, but does not lay down a road map for education for CwSN. For example, the framework gives an illustrative standard for curricular goals and a fairly exhaustive explanation of competencies required for different classes, but does no such thing when it comes to CwSN.

Policymakers need to adopt a similar approach for CwSN and include policy suggestions for them under a separate section. Considering the limitations in designing curriculums for CwSN, inclusion of several illustrative use cases will help special educators in implementing inclusive teaching techniques by referring to the framework. This section can list the different types of competencies and detail how teachers can customise the curriculum of each subject for children with different disabilities. 

Accommodating different kinds of disabilities: The Skill Council for Persons with Disability (SCPwD) was set up as a national body with the aim to recommend industry-linked curriculum skills to PwDs. However, their classification of vocational jobs is primarily based on physical disabilities. The current list of recommended subjects based on disability has no specific guidelines and suggestions for children with intellectual disabilities. However, if implemented correctly, the NCF provides flexibility that can be leveraged to recommend infrastructure, curriculum, and models aligned to the needs of children with intellectual disabilities in consultation with the special educators working with them. This will help equip CwSN with the appropriate skills that they require for jobs.

3. Infrastructure and industry linkages

When it comes to vocational training for CwSN, providing assistive devices, mobile skill labs, and customised hands-on training are important aspects of creating a solid curriculum. However, for CwSN to progress to meaningful livelihood-linked pathways, it is important that relevant elements of vocational training are interlinked in the curriculum with internships or industry exposure at the school level. This could include interactions with professionals through webinars, workshops, and internships as well as job-specific skilling modules. For example, CwSN interested in hospitality can attend trainings for soft skills related to the sector. However, most educators or schools may not be directly connected to industries or they may not have the knowledge to provide industry-specific skilling. Therefore, in order to create a smooth school-to-work transition for CwSN, it is crucial for schools and industries hiring PwDs to work in tandem, as these businesses may already have a dedicated budget, induction training modules, and special hiring programmes in place.

Vocational education is an integral component of education for CwSN, as it can be a catalyst for livelihood opportunities and can empower CwSN to lead a dignified life. Educators, policymakers, and private players must collaborate to devise market-linked learning pathways that can enable CwSN to adopt critical work and life skills.

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Know more

• Read this report on the state of education for India for children with disability.
• Read this article to learn how COVID-19 affected inclusive education in India.
• Read this blog to learn more about multidisciplinary individualised education programmes.

Do more

• Provide feedback on the draft of the National Curriculum Framework here.

Historically, transgender individuals have been excluded from the realm of healthcare services. The healthcare system has neglected the overall health of trans people, with a narrow focus on preventing HIV and STDs. As a result, non-communicable diseases, including mental health concerns, in the transgender community often go undiagnosed. According to a study on the human rights of transgender persons, gender affirmation surgeries are costly and beyond the reach of many trans people, and few hospitals in India are equipped with trained healthcare providers to perform them.

Many transgender individuals have limited to no access to social protection systems or formal healthcare services due to a lack of appropriate documentation. Rates of formal employment are low, which is both a product of and a contributor to stigma and socio-economic marginalisation. Without access to formal healthcare services, transgender individuals are forced to rely on informal and potentially unsafe sources of healthcare—this can lead to serious health risks and complications. Research has shown that trans people often seek government healthcare facilities as a last resort due to a lack of trust in healthcare providers.

The prescribed textbooks in the MBBS curriculum do not adequately feature representations of trans bodies and have been criticised for not addressing the complexities of gender beyond the binary of male and female. Lack of training and education about non-binary gender identities and the health needs and experiences of trans people can contribute to the formation of negative stereotypes and attitudinal biases among healthcare providers. This presents a significant barrier for trans people seeking healthcare.

Sensitisation of healthcare professionals, therefore, is necessary to ensure that they are adequately equipped to provide quality health services to trans people.  

The CEHAT study

Since 2015, in collaboration with government medical colleges in Maharashtra, the Centre for Enquiry into Health and Allied Themes (CEHAT) has made efforts to integrate gender perspectives in undergraduate medical education. There is a paucity of studies analysing medical practices through a gender lens and how medical education informs clinical practice. This prompted CEHAT to undertake a situational analysis at five semi-urban teaching hospitals in Maharashtra. These teaching medical college hospitals are tertiary care hospitals, and most of the patients are from economically marginalised sections of society. The objective was to study clinical practices in five departments—internal medicine, community medicine, obstetrics and gynaecology, psychiatry, and forensic medicine and toxicology—through a gender lens. In-depth interviews were conducted with a faculty member from each department across all five colleges.

The broader findings of the study indicate that teaching hospitals in India are marked by social and professional inequalities, hierarchical functioning, and bureaucratic processes that marginalise women and individuals who do not conform to gender binaries. Some of our findings are discussed in greater detail here.

1. Lack of interaction with trans patients is detrimental to understanding their healthcare needs

Although healthcare providers claimed that they did not discriminate based on sexual orientation or gender identity, they lacked a comprehensive understanding of the health needs of transgender individuals beyond HIV and STDs. A reason for this could be inadequate interaction with the transgender community. One of the participants, an assistant professor of internal medicine, said, “We get transgender patients very few times. Once a month… From what I can remember, not more than 10–15 cases in a year.”        

In addition, participants of the study claimed that despite being ‘sensitive’ towards them, transgender individuals preferred private doctors or practitioners of AYUSH medicine over government-run facilities, thus shifting the blame for high out-of-pocket expenditure on healthcare from the public health system to transgender persons themselves.

2. There are no outreach programmes targeting the trans community

Community medicine is concerned with the prevention of disease in communities and is a core subject in undergraduate education as it lays the foundation to understand the concerns of communities. It is also vital in forming medical students’ attitudes towards the healthcare needs of marginalised communities. Community medicine departments engage with communities through information, education, and communication (IEC) activities conducted on various health days; social mapping exercises; and screening camps catering to specific populations such as the elderly, children, or women. We found that there is not enough of a concerted effort to foster engagement between the transgender community and medical students. In the five hospitals that we studied, there were no specific community activities addressing the needs of this vulnerable community as part of community outreach programmes.  

3. Personal biases and lack of clarity interfere with caregiving practices

Gender certification refers to the process through which an individual’s gender is legally recognised; it is required for obtaining official documents such as birth certificates, passports, and identity cards that reflect the individual’s gender identity. The Transgender Persons (Protection of Rights) Act, 2019, and the 2020 Rules (added the following year based on recommendations from trans people) gives trans people the right to self-identify and declare their gender identity, and states that medical examination is not necessary for gender certification. However, the psychiatrists we spoke with were unsure about these rules and their role in the process of gender certification. One reason for this confusion may be the lack of guidelines from medical authorities at the national level. There were no clinical psychologists in the departments that we interviewed, which also makes screening of mental health issues difficult.

One narrative also highlighted the thorough rejection of self-determination of transgender individuals. According to an associate professor of psychology we interviewed, transgenderism may be a phase that “…may not persist for long. And once that surgery is done, you don’t have the natural organs. And then reversing to the natural organs is not possible. The patient was in the age group of 20–25 years… These mental states are changing…and they don’t last. And if you go for irreversible procedures, then they may end up causing agony which cannot be addressed later.” Such attitudes may lead to a delay in caregiving.

The way forward

Healthcare providers are in a unique position to address the inequities faced by trans people, because they are often the first point of contact for individuals seeking medical care, support, and advice. They have the opportunity to positively impact the physical, emotional, and mental health of trans individuals and play a crucial role in improving their overall well-being. Here are some steps they can take.

1. Healthcare providers can make health systems equitable by creating a welcoming and inclusive environment for trans individuals, which includes using appropriate pronouns, asking open-ended questions, and avoiding assumptions about a person’s gender identity or sexual orientation.
2. Healthcare professionals need to be trained on the unique health needs of transgender individuals, including hormone therapy, gender-affirming surgeries, and mental health issues related to gender identity. The undergraduate medical curriculum must be informed by and sensitive to gender, so that future healthcare providers can be competent in providing quality care to gender-diverse communities.
3. Conducting workshops with medical educators to discuss aspects such as gender, sex, gender identities, and sexual orientation can be another effective strategy. Medical educators can be sensitised to the lived realities experienced by marginalised communities and how identifying outside the mainstream can impact access to health services. Trans people are the best authority on the challenges that they face, so they should be actively consulted to gain a more practical and tangible understanding of their healthcare-related concerns. These workshops can help medical educators become more aware of the unique healthcare needs of transgender persons. Once equipped with this knowledge, teachers are expected to impart these learnings to their MBBS students, as this is also now a requirement under the competency-based medical curriculum issued by the National Medical Commission.
4. Training is merely the first step to develop a sensitive response from healthcare providers—structural changes are also required. These changes do not always need a high amount of finance or infrastructure. For instance, toilets for the disabled can also be made available for non-binary people. This can be an interim arrangement since OPDs might not have the space to construct new toilets. Similarly, for inpatient services, gender-diverse people can be admitted to a special room rather than to a male-only or female-only ward.

Such changes are essential in creating an environment that is safe, supportive, and affirming of the diverse identities and experiences of trans people.

The establishment of a transgender ward in the Mumbai’s hospital is a positive development and should be accompanied by concurrent efforts in reforming medical education and gender-transformative policy interventions for health systems.

Sangeeta Rege and Amruta Bavdekar contributed to this article.

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Know more

• Learn more about CEHAT’s Integrating Gender in Medical Education programme here.
• Read this article to learn how a trans rights activist is fighting the prejudice against trans, hijra, and intersex communities.
• Understand how the 2019 Transgender Persons Act obstructs trans people’s right to self-determination.    

Do more

• If you are trans and/or have a medical background, share your experiences with CEHAT.