Author: Amba Salelkar

Celebrating Stephen Hawking and Also Celebrating Disability

Upon his death, persons with disabilities were dismayed by reactions centred on how his “suffering” had finally ended, and illustrations depicting him leaving his wheelchair and ‘ascending’ into the beyond.

The recent passing of Stephen Hawking has been met with expressions of grief as creative as the man himself. Unfortunately, ableism has abounded in this collective celebration of the life of arguably the most famous person with disability in the world. And disability rights activists have been calling it out.

The disability rights movement is a relatively young human rights movement, and isn’t always met with the empathy it demands. The idea that disability is suffering and pain is well entrenched in the public psyche. In fact, the movement now chiefly subscribes to the ‘social’ model, which is to say that people who may have impairments are disabled by lack of access to infrastructure and communication and by attitudes around them that create barriers. That it is these barriers to participation that should be addressed by the sector by enacting rights-based legislations prohibiting discrimination, and promoting new technology and services to support people’s efforts to communicate, move and make decisions.

Hawking was 21 years old when he was diagnosed with amyotrophic lateral sclerosis. His prognosis was poor, and his condition deteriorated even as he was finishing up his education and beginning his academic career. Within a decade, only his close family and friends could understand him. He began to use a wheelchair reluctantly.

In 1985, when visiting CERN (the European nuclear physics lab in Geneva, Switzerland), he developed a life-threatening condition; his wife was even asked if she would rather turn off life support. She refused, instead opting for an emergency tracheostomy that had doctors remove whatever there was left of his voice. Instead of institutional care under the National Health Services of the UK, private financial support enabled Hawking to live at home and continue working, with the support of well-trained nursing staff. Hawking also received the support of emerging technology in alternative and augmentative communication. His computer, sponsored by Intel, is operated by cheek movements.

Along with his pioneering work in cosmology, he became a popular cultural icon. For the disability sector, he stood for a person with disability thriving after barriers to his participation were removed, but also set the bar very high for the ‘productivity’ of persons with disabilities.

Hawking himself acknowledged how his value created a form of privilege among persons with disabilities in the foreword to the World Disability Report, 2011.

I have benefitted from access to first class medical care. I rely on a team of personal assistants who make it possible for me to live and work in comfort and dignity. My house and my workplace have been made accessible for me. Computer experts have supported me with an assisted communication system and a speech synthesiser which allow me to compose lectures and papers, and to communicate with different audiences.

But I realise that I am very lucky, in many ways. My success in theoretical physics has ensured that I am supported to live a worthwhile life. It is very clear that the majority of people with disabilities in the world have an extremely difficult time with everyday survival, let alone productive employment and personal fulfilment.

Upon his death, persons with disabilities were dismayed by the number of reactions centred on how his “suffering” had finally ended, how he was “free” from “constraints”, and illustrations depicting him ‘ascending’ into the beyond, leaving his wheelchair behind (as much as this might be ironic, considering Hawking’s atheist views).

ablebodied friends, please be very critical of the articles/pics you share regarding Dr. Stephen Hawking's death. a lot…

Posted by Mike E Williams on Wednesday, 14 March 2018

Activists have argued that this is just another means of devaluing the lives of persons with disabilities. Hawking wasn’t trapped in his wheelchair; it was the wheelchair that set him free. When Robin Williams, who experienced depression for a large portion of his life, committed suicide, he was mourned by the Academy for Motion Picture Arts and Sciences with a still from the movie Aladdin (1992), where Williams voiced the genie, with the caption “Genie, you’re free”.

This isn’t merely the outrage of ‘snowflakes’. Depicting death as a desirable escape from disability undermines the experiences of persons with disabilities as living beings. Assumptions on the poor quality of life of persons with disabilities and the fact that they would be “better off dead” have policy implications as well. Its relation to eugenics must also be acknowledged. There has been discomfort with efforts to promote assisted suicide and euthanasia for persons with disabilities from within the disability sector. Considerable government resources are spent in ‘preventing’ disability, including through screening and abortion of foetuses with Down syndrome and other impairments, instead of breaking stereotypes about the poor quality of life experienced by the disabled.

People have been hoping that that policymakers derive inspiration not from Hawking himself but from the outcomes of support provided to the disabled. There is a considerable cost to excluding persons with disabilities from society; given that the majority of them in the world are still restrained by barriers to participation, any estimate would come up short. Existing resources being diverted to services that perpetuate segregation, infantilisation and dependence need to be repurposed towards giving the disabled the supports they need to realise their own potential. To – in a tribute to Hawking – “to look up at the stars” and not at their impairments.

Amba Salelkar is a lawyer with the Equals Centre for Promotion of Social Justice. The organisation focuses on policy and budget advocacy towards furthering the rights of persons with disabilities.

Love in the Time of Parental Rage

The Tamil Nadu government is attempting to take the rights of young lovers back by decades.

Media reports that the Tamil Nadu government has allegedly created hurdles for the registration of marriages under the Hindu Marriage Act comes as a surprise for those following the programmes and policies of this otherwise “progressive” state.

Ironically, this is a regressive requirement that accompanies an otherwise progressive legislation.

One of the consequences of the Dravidian movement in Tamil Nadu was the passage of the Hindu Marriage (Tamil Nadu) (Amendment) Act, 1967, which was one of the first legislations passed by C.N. Annadurai upon becoming chief minister in 1967. The amendment removed the requirement that Hindu marriages have to have been conducted in the presence of a Brahmin priest and involve the ceremonies of saptapadi. Under the Amendment, suyamariyathai or “self respect” marriages could be deemed valid if the couple exchanged rings, garlands, declarations of intent to marry, or by the tying of the thali (necklace), in the presence of friends or relatives. This amendment was widely invoked in inter-caste marriages, free from ceremonies steeped in caste, and has even withstood constitutional challenges.

According to The Hindu‘s report, the internal circular provides that:

  • The names, initials and address of the parents given in the application should tally with the details contained in the accompanying documentary proof, failing which marriages shall not be registered.
  • In case any of the parents of the couple are dead, they must produce the original death certificate of any of their parents mentioned as deceased, and attach a photocopy.

Clearly, a couple who seek to register their marriage, be it a “self-respect” marriage or one conducted under the Hindu Marriage Act, now have to ensure that they have documentary proof of their parents’ current addresses. A Twitter user with the handle @subjudiced described in a series of tweets the bureaucratic hassles he encountered around his brother’s marriage registration, which took place last month:

True story. My younger brother got married on 25th Feb in Chennai. Inter-caste. My parents returned to hometown immediately after the wedding. Newly wedded couple, the girl’s parents, my elder brother & I went for registration the next day with all the documents that are required.

After verification of documents, they asked for parents. we said, “girl’s parents are here”. they were like “no both the set of parents must be here” and refused to entertain.

I got slightly agitated and asked them where they are getting this requirement from. we were then told to meet the senior officials. They told us that the addresses of parents must match with addresses mentioned in documents of bride & groom.

It did match in our case. we eventually got the marriage registered. when we were getting done, they told us the reason as to why they are asking for parents now.

Apparently a judge’s daughter got married & registered the marriage without the parents, which created a huge scene in the registrar offices. they want to avoid situations where powerful/ rich parents come & yell at them on their face for registering inter-caste marriages.

I guess the way they operate is, check the castes, ask for parents (to know if the parents have consented), then ask for ID proof of the parents (by saying address should match), see who the parent is, keep the registration on hold & alert the parents if they have to. ridiculous!

The Hindu quoted an official who explains that couples are still open to have their marriages registered under the Special Marriage Act. The Hindu Marriage Act and the Special Marriages Act came into being very close to each other, with the latter having been enacted a year before the former. The purpose of both laws is different. The Hindu Marriage Act provides for what is a valid marriage under Hindu law. Valid marriages under this Act, and in fact all laws that recognize marriage, are to be registered under the Tamil Nadu Registration of Marriages Act, 2009. The registration, which requires proof of marriage such as photos of the event, invitation cards etc. is in effect post facto recognition of the marriage by the State.

On the other hand, the Special Marriage Act actually prescribes the procedure for marriage, including mandatory publication of notice in a district in which at least one of the parties to the marriage has resided for a period of at least 30 days prior to the registration of the marriage. This register is to be kept open for inspection by any person. Formal objections to the solemnisation of the marriage must be in relation to any of the conditions for marriage not being met, for example, either parties being underage, or already married. However, it does not preclude ‘informal’ objections to marriage in the form of threats, coercion and violence.

The rationale being rumoured for these provisions appear to be to minimise the damage caused to government offices by angry family members and caste organisations after the registration of a ‘contentious’ marriage. Clearly, this is a law and order problem, and it is preposterous that the burden of preventing this is being placed on couples who are trying to comply with the State’s requirement of registering marriages. For instance, in order to be eligible for financial assistance of Rs. 2.5 lakhs under the Dr. Ambedkar Scheme for inter caste marriages, registration under the Hindu Marriage Act is mandatory. This money can mean a lot for a couple who have been ostracised from their families. However, the newly prescribed steps to become eligible for the same can cost them much more.

The mandatory involvement of parents in a decision taken by adults is also clearly violative of the right to privacy of the couple. As Justice S.A. Bobde summarises in K.S. Puttawamy versus Union of India,

The first and natural home for a right of privacy is in Article 21 at the very heart of ‘personal liberty’ and life itself. Liberty and privacy are integrally connected in a way that privacy is often the basic condition necessary for exercise of the right of personal liberty. There are innumerable activities which are virtually incapable of being performed at all and in many cases with dignity unless an individual is left alone or is otherwise empowered to ensure his or her privacy.

In the same ruling, Justice D.Y. Chandrachud concluded that “privacy includes at its core the preservation of personal intimacies, the sanctity of family life, marriage, procreation, the home and sexual orientation.” In fact, it would be interesting to consider whether the “open” notice procedure under the Special Marriage Act is either necessary or constitutional, in light of the 2017 judgment, especially when the ‘state interest’ to verify age and prior marital status can be satisfied with electronic verification of marriage records and birth registrations in these modern times.

The amendment to the rules on registration of marriages under the Hindu Marriage Act may enable more tragedies like that of Shankar, Ilavarasan, Sushma, and countless others whose names we should never forget. The government’s approach of ‘prevention being better than cure’ cannot be allowed to take the rights of young lovers back by decades.

Amba Salelkar is a lawyer with the Equals Centre for Promotion of Social Justice. The organisation focuses on policy and budget advocacy towards furthering the rights of persons with disabilities.

A Film on Chronic Fatigue Syndrome That Tells a Story We Don’t Normally Hear

Beyond the candy fluff of ‘Women’s Day’, Unrest raises the bar for feminists, disability rights activists and their allies.

Beyond the candy fluff of ‘Women’s Day’, Unrest raises the bar for feminists, disability rights activists and their allies.

A scene from the documentary film 'Unrest' (2017). Source: YouTube

A scene from the documentary film ‘Unrest’ (2017). Source: YouTube

Early on in the documentary film Unrest (2017), Jennifer Brea, the filmmaker and protagonist, preempts a question to the camera, recording her struggling to manoeuvre herself on her bed.

“I know you might be saying to yourself, if I really couldn’t stand up, why would I be filming it? Well… I kind of think someone should see this.” Unrest is a revelation of gaze and filmmaking at the intersection of disability and gender, more particularly gender roles. The film is the experience of myalgic encephalomyelitis (ME), more commonly referred to as “chronic fatigue syndrome”, narrated by someone experiencing the condition. That narration is stark and pulls no punches. There are parts of the film that follow Brea and her husband, through their various attempts to understand, cure and manage her condition over the years, that are overwhelming by virtue of how deeply personal they are.

After a good streak of health, capped by a triumphant afternoon celebration with the alumni and faculty members at Princeton University, she is curled up in a foetal position. Brea has relapsed. She is sobbing and wailing, still in her orange Princeton t-shirt, with her husband crouching next to her looking despondent. As a viewer celebrating her success, the transition evokes a visceral reaction from the viewer. The helplessness the couple shares is real, honest and contagious.

Turning the camera on gender roles

Most documentaries regarding disability focus on the medical condition itself or on the individual – but retain the commonality of being seen from the lens of the able-bodied. Persons with disabilities are excluded from many opportunities. The ability to tell their own stories is one of them. Accounts of the lives of persons with disabilities are rightly dismissed by persons with disabilities themselves as “inspiration porn” and for being Oscar bait. But by turning the camera on herself, and on others who have this condition, Brea owns the narrative and manages to elicit empathy instead of sympathy.

Doing this with ME is no easy task. The film was funded via Kickstarter, “shot” over four years using iPhones and Skype. Its most poignant and uncomfortable moments are those shot in the style of cinéma vérité. It appears that Brea began recording herself to counter the gaslighting of her experiences by medical professionals, a theme that other respondents in the film also speak of.

Gender is as much a theme of the film as disability is. The viewer is introduced to Omar, Brea’s spouse, through smiling wedding videos and “how we first met” anecdotes. Omar’s identity to the viewer is entirely one of a caregiver and devoted husband until we are introduced to Omar Wasow, once considered one of the most influential people in cyberspace. We are left to ponder the costs to Wasow, and perhaps to cyberspace in general, on account of the exclusion he and Brea faced because of her condition.

Brea spent years without a diagnosis and attempted several methods of controlling the condition, including living in a tent house. What the film does dwell on is Brea’s guilt as a spouse at “robbing” Wasow of his entitlements.

Gender roles as constructed are inherently ableist, assuming women to be caregivers in their role as wives. The camera stalks friends of the couple, talking about the joys of having children, while Wasow nods. Later, on Twitter, Brea spoke of an incident where a doctor took Wasow into another room and told him that it was “okay to leave her”. This comes as no surprise. Failure to perform gender roles can be considered to be grounds for divorce on the condition of “mental cruelty”.

Similarly, if a person has been suffering, intermittently or continuously, from a mental disorder “of such a kind and to such an extent that their spouse cannot reasonably be expected to live with them”, it can be considered to be a ground for divorce under Hindu marriage law.

Reclaiming the narrative

A brief history of ME is pieced together by Brea, who points to similarities in the diagnostic criteria for hysteria and conversion disorder, both mental illnesses themselves. Lee-Ray Denton, featured in Unrest, was ‘left’ by a husband who thought she was being lazy. It was only when their daughter was also diagnosed with ME, many years later, that he realised that this wasn’t “just in her head”. In Denmark, symptoms of ME are misdiagnosed as a mental illness and persons are institutionalised under mental health laws. This particular account in the film was problematic, as it implied that the forced institutionalisation of a young girl was an issue because she had ME and not a mental illness.

The present rights paradigm respects the rights of all persons with disabilities to live in the community with the support that they require to live independently.

Unrest is a film about people – primarily women – disabled by their condition. The campaigns that the film captured (like #millionmissing) and the campaigns that it has spurred both focus on whether the medical establishment has been aware of the condition, and the lack of funding to study ME and other conditions that disproportionately affect women. The prevalent discourse on disability worldwide is centred around the ‘social model’. It says that persons who have impairments (e.g., being unable to see, hear, or move as others without impairments do) are impaired by barriers in society that keep them from enjoying their life on an equal basis with others. This is opposed to the medical model, which focuses solely on the condition. Unrest reaffirms some of the skepticism disability rights activists have had with the social model, and shows that the health domain is still important for several constituencies among persons with disabilities, and that we can’t leave them behind.

One hopes that the discussion around Unrest will also include other barriers inhibiting the participation of persons with ME and not just treatment of the condition (as important as the latter may be). With no cure on the horizon, the stigma attached to the condition has prevented those who live with it from the receiving the kind of support they need.

Accommodating people with ME in schools, colleges and the workplace requires us to include what accessibility and reasonable accommodation means to someone with chronic fatigue. A beautiful part of the film shows Jessica, a teenager with ME, floating in an accessible swimming pool with the help of a trainer aware of her needs.

Advocacy must also discuss what additional support persons with ME require when they are in critical phases, unable to do much else, as well as ensure that their caregivers aren’t excluded from realising their own potential. India’s new disability law excludes ME and several other rare diseases and conditions as disabilities for the purpose of entitlements under the law, which means that the battle for rights is a little steeper here.

Beyond the candy fluff of ‘Women’s Day’, Unrest raises the bar for intersectional approaches for feminists, disability rights activists and allies. Even if you abhor the idea of a film that forces you into activism, it is – along with everything else – the reclamation of a narrative by a woman, with a heartwarming love story to boot.

Unrest is available to stream on Netflix India.

Amba Salelkar is a lawyer with the Equals Centre for Promotion of Social Justice. The organisation focuses on policy and budget advocacy towards furthering the rights of persons with disabilities.

Javed Abidi’s Brand of Activism Will Continue to Power Generations of Disability Rights Champions

His methods were unorthodox and discussions in any corner of the world on disability rights in India would always lead to Javed Abidi.

His methods were unorthodox and discussions in any corner of the world on disability rights in India would always lead to Javed Abidi.

Javed Abidi. Credit: Facebook/Javed Abidi

It’s no exaggeration to say that 53-year-old Javed Abidi, who passed away on the March 4, was the face of the disability movement in India for the last couple of decades. As the story goes, he was named ‘Javed’ – immortal – in order to stave off the declaration of the doctor who predicted that he had only days to live, at birth. He was, in that sense, a man vaguely aware of the fact that he was on borrowed time – he seemed to be omnipresent at times, with prompt replies to emails that he thought important regardless of the time zone he was in. He was constantly on the move, contesting elections, leading one of India’s most prominent disability rights organisations as well as one of the largest disabled people’s organisations in the world, Disabled People’s International. Indeed, even the world was not enough for Javed Abidi.

Abidi’s entry into the world of disability rights came not from his identity as a person with disability as much as it did from a happy coincidence of philanthropy and privilege. He had earned a degree in journalism from Wright State University, Ohio, but his qualifications were being overlooked by potential publishers because they weren’t convinced that he could ‘work’ with his impairment, spinal bifida, for which he used a wheelchair. This was reflective of the disability rights approaches of the time, which were all about charity. Perhaps it was with this approach in mind that Sonia Gandhi, who was setting up the Rajiv Gandhi Foundation in the name of her late husband, contacted Abidi to help set up the disability wing of the organisation.

Abidi, influenced by the evolving social model of disability from his campus experiences, took the opportunity and made it his own. This engagement led to the formation of two important organisations – the National Council for the Promotion of Employment of People with Disability and the Disability Rights Group (DRG), which later took on several avatars. The former worked with the private sector to help overcome the barriers that existed preventing the gainful employment of persons with disabilities. The latter was the closest one could imagine to a political lobby group on the rights of persons with disabilities.

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What set the DRG apart from other groups working on disability rights was the fact that it sought to be cross-disability, an innovation that was recognised when awarding Abidi an Ashoka fellowship in 1998. The DRG, through Abidi, used the privilege of political proximity, education, awareness and exposure to launch a variety of actions towards realising the rights of persons with disabilities. The organisation takes credit for the passage of the Persons with Disabilities Act, 1995, where protests by the organisation convinced all parties to set aside their high drama in parliament to pass the law.

They also led a public interest litigation on a variety of issues, with the support of the Human Rights Law Network and the Public Justice Foundation’s Disability Rights Initiative. Though the 1995 Act had its limitations, this ‘strategic litigation’ precipitated changes to accessibility in higher education, accessible voting in elections, and accessible air travel. A long-pending litigation on accessibility in public infrastructure was finally reserved for judgment in December 2017, and it promises to be part of Abidi’s legacy to the sector.

Abidi and the DRG also claim credit for the Ministry for Social Justice and Empowerment setting up a committee to draft a new disability rights legislation in light of India’s ratification of the Convention on the Rights of Persons with Disabilities. The committee was headed by Sudha Kaul, a non-disabled person, and lacked representation from many impairment groups. Abidi launched a protest, bringing disabled activists from all over the country. While the chairperson remained, representatives of groups like psycho-social disability and developmental disability joined the committee. However, many of them resigned within a few months of the work commencing, citing failure to prioritise their concerns in the discussions, particularly those pertaining to the legal capacity of persons with disabilities. Meanwhile, Abidi had been elected as chair of the Disabled People’s International in 2011, which engaged much of his time and energy. Yet, he retained a key eye on the happenings in India.

Subsequent versions of the Bill further diluted these provisions, and the law that came to be introduced in parliament in January 2014 was seen as meaningless for impairment groups that faced numerous barriers on account of being perceived to “lack capacity”. In fact, it was another Abidi-led effort, the compilation of the Parallel Report of India on the Convention on the Rights of Persons with Disabilities, that led to the first collation of all laws relating to incapacity of persons with disabilities.

Leaders from these marginalised impairment groups were outraged by the omissions in the draft and sought its referral to the parliamentary standing committee. These activists were at loggerheads with the DRG and other allied organisations, who pushed for passage of the Bill without further delay. The ‘battle’ got personal, since many of the dissenters were proteges of Abidi, and have left the sector acrimonious till this day. It is a tribute to Abidi’s leadership capability that attempts to establish a ‘cross disability’ front to counter his own remained feeble and fell apart as soon as the referral to the standing committee was made.

Abidi’s career as an international disability rights activist and leader was not without controversy. However, he established himself as a champion for the Global South in a disability rights movement largely dominated by white, and often able-bodied voices. There are numerous anecdotes of how Abidi regularly “shut down” representatives of International Human Rights Organisations talking about disability rights by pointing out that they had no person with disabilities in their organisations. He was known as a ‘game-changer’, and his methods were unorthodox. Wherever one worked, whatever corner of the world, discussions on disability rights in India would always led to Javed Abidi.

Abidi’s legacy includes bringing a sense of entitlement and professionalism to the struggle for disability rights. He caused a generation of activists to be exposed to tools like litigation, policy advocacy, budget analysis. He supported the formation of regional organisations to support the most marginalised like the Disability Legislation Units, and also supported organisations like BarrierBreak in hosting Techshare, which showcases cutting edge technology for persons with disabilities.

Organisations working on disability now comprise more persons with disabilities. Abidi held a fragile cross-disability movement together. He led a cross -disability dharna against the proposed Mental Health Bill even when certain impairment groups did not want “those people” with psycho-social disabilities to be included under the same legislation. And he was not one to rest on his successes. In the next few weeks, the NCPEDP is organising training in several states on the 2016 disability law. Translations of the laws into local languages is also underway. My last conversation with Abidi, albeit towards the end of November 2015, was brainstorming on a panel for an event to commemorate 20 years of the 1995 Disability Law: The Equality +20 conference for which he had invited me as a panelist. I was, admittedly, sulking at the foregone conclusion that this law was going to be passed as it was.

“Do you think it will end there? Of course, the law isn’t perfect. I want you to talk about what will be next. Whatever it is. Whatever we need to do.” I wasn’t going to miss it come hell or high water, or so I imagined – unfortunately, the 2015 floods in Tamil Nadu prevented this exchange in public.

The disability sector has its share of experts, and activists. Whether there will be another leader like Abidi to represent the views of the sector at the national level remains to be seen, especially at this juncture when different (and newer) groups are fighting over limited resources. Regional movements for advocacy on the rights of persons with disabilities are gaining foot, as are intersectional perspectives, such as women with disability, who have found themselves excluded from the approaches of a mostly male-dominated sector. Abidi’s demise may be coinciding with the end of an era, but decades of his brand of activism will continue to influence the methods of newer generations, one way or the other.

Amba Salelkar is a lawyer with the Equals Centre for Promotion of Social Justice. The organisation focuses on policy and budget advocacy towards furthering the rights of persons with disabilities.

Why Combating Depression Involves Addressing Inequalities

While the prime minister’s World Health Day speech was timely and important, it missed the points on the roots of depression that were addressed by UN special rapporteur Dainius Pūras.

While the prime minister’s World Health Day speech was timely and important, it missed the points on the roots of depression that were addressed by UN special rapporteur Dainius Pūras.

Representative image. Credit: PTI

Representative image. Credit: PTI

Depression gets a lot more coverage in mainstream media than other mental health conditions for several reasons. It is largely considered to be a ‘manageable’ condition, without any apparent violent outcomes outside of the individual. Those affected by it still retain some agency to express their viewpoints, and include several high profile personalities. Anti-depressant medication, to correct ‘chemical imbalances’, has entered into popular cultural lexicons. Even discussions on the mental healthcare Bill, recently passed by both houses of parliament, tend to focus on the decriminalisation of the attempt to commit suicide, again perceived as an outcome of depression.

Available information on the statistics on the prevalence and likelihood of development of depression is on the rise. However, given the overall lack of awareness and marginalisation of persons with psychosocial disabilities, the theme of this year’s World Health Day as ‘depression’ is still important. Two important people aired crucial views on addressing depression – the Indian prime minister, Narendra Modi, and the UN special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Dainius Pūras – that create both opportunity and guidance on the way forward.

Modi is to be appreciated for staying within the social model of disability during his widely broadcast ‘Mann ki Baat’. He addressed the issue of depression from a non-medical perspective and spoke of the need for a ‘psychologically conducive environment’. He also provided simple yet effective examples of how friends and family could identify psychosocial vulnerability. The factors leading to depression identified by his speech seem discomfiting – particularly the reference to ‘students in hostels’ facing loneliness, in light of constant attempts to frame recent suicides by Dalit students solely as mental health issues. Pathologising inabilities to cope with situations runs the risk of placing the onus on the individuals to cure themselves, as opposed to recognising the structural imbalances that lead to the isolation or vulnerability of the person to psychosocial disability.

This is recognised by the statement of the special rapporteur, who points to an increasing evidence base that higher prevalence of depression is “…strongly linked to early childhood adversities, including toxic stress and sexual, physical and emotional child abuse, as well as to inequalities and violence, including gender based inequalities and gender based violence, and many other adverse conditions which people, especially those in vulnerable situations such as poverty or social exclusion, face when their basic needs are not met and their rights are not protected.”

For this, he proposes interventions at the population and the individual level, which are of relevance for India’s evolving mental health policy and the attainment of Sustainable Development Goals. At the population level, it is suggested that mental health must be scaled across policies and services in general health, education, poverty reduction and violence prevention, to reduce major risk factors and strengthen the resilience of individuals, families and communities.

The newly enacted Persons with Disabilities Act provides for 5% reservation in poverty alleviation and developmental schemes for persons with disabilities (including persons with psychosocial disabilities). The predecessor to this Act, the Persons with Disabilities Act 1995, had a similar provision mandating a 3% reservation, but even in a state like Tamil Nadu, across departments, the specific allocation to persons with disabilities remained stagnant at 0.2% of the total expenditure for the last five years.


There is no data on how much of this is accessed by persons with psychosocial disabilities, as there is hardly any disaggregated data maintained on the nature of impairments of the persons who participate in government programmes. Persons with psychosocial disabilities are further alienated from these programmes because of the system of certification of ‘mental illness’, which takes place often at the state-capital level. The costs of travelling and obtaining the certificate is more than the government’s benefits.

The special rapporteur makes crucial observations while discussing interventions at the individual level, regarding the use of biomedical interventions in the treatment of depression and suicide prevention, one that has been spoken of by users and survivors of psychiatry for decades. He states that “…the use of psychotropic medications as the first line treatment for depression and other conditions is, quite simply, unsupported by the evidence.” While conceding that medication may have its place in the management of other mental health conditions it is stated that “…(t)he excessive use of medications and other biomedical interventions, based on a reductive neurobiological paradigm causes more harm than good, undermines the right to health, and must be abandoned.”

The special rapporteur speaks of cost-effective psychosocial interventions that may be provided by general care workers instead of by psychiatrists. This can be provided by strengthening existing systems of community health workers, including by increasing their numerical strength and ensuring living wages for the work that they do and perhaps developing a system of peer support in line with similar models piloted in other developing nations.

In the aftermath of a new mental health legislation and a recent mental health policy that was championed as ahead of its time, the special rapporteur’s words come as guidance and a warning for the way forward.

Hopefully, the prime minister’s commitment towards persons with psychosocial disabilities sees, as the Special Rapporteur advocates, a shift in investments in mental health, from focusing on the now controversial “chemical imbalances” to focusing on “power imbalances” and inequalities. The prime minister may be right in calling for the “expression of depression instead of its suppression”, at the risk of invoking a Tamil popular culture reference, dismantling structures of oppression may be a close second. Prevention and management of mental health conditions may involve more than engaging in community service and yoga – persons with mental disorders experience vulnerabilities that need to be concretely addressed.

For instance, on the question of employment, OECD statistics have found that persons with mental health disorders are two to three times more likely to be unemployed and more likely to be dismissed, which leads to further escalation of their conditions. The Persons with Disabilities Act 2016 has an awkwardly worded chapter on ‘Skill Development and Employment’ which mandates all establishments (government and private) to enact equal opportunity policies, but only requires that government establishments not discriminate against persons with disabilities in matters relating to employment. While reconciling these two may require an eventual Supreme Court intervention, the overall legislation permits discrimination against persons with disabilities if there is a legitimate aim, which can easily go against someone who is struggling to meet work targets on account of their disability in a private workspace. These are difficult conversations both at the personal and policy level – but as the slogan for World Health Day goes, “Let us Talk”.

Amba Salelkar is a lawyer with the Equals Centre for Promotion of Social Justice. The organisation focuses on policy and budget advocacy towards furthering the rights of persons with disabilities.

Budget 2017: Where is the Money to Implement the Disabilities Act?

Despite having passed the Rights of Persons with Disabilities Act in 2016, the Budget allocated only about 0.0039% of the GDP for the differently abled.

Despite having passed the Rights of Persons with Disabilities Act in 2016, the Budget allocated only about 0.0039% of the GDP for the differently abled.

The Budget this year has hardly set aside any money for the rights of persons with disability. Representational image. Credit: Nikolas Morberg/ Flickr CC BY-NC 2.0

The Budget this year has hardly set aside any money for the rights of persons with disability. Representational image. Credit: Nikolas Morberg/ Flickr CC BY-NC 2.0

Persons with disabilities and their families had many hopes resting on the Budget speech. After all, the prime minister himself had made it quite clear that he held this sector close to his heart – rechristening them divyang and even spending his birthday distributing aids and appliances to them. The Sugamya Bharat Abhiyaan (Accessible India Campaign), launched in 2015, was said to be another highlight of this commitment. And finally, with the passage of the Rights of Persons with Disabilities Bill – which brought the ruling party and the opposition together ostensibly for the betterment of the sector – people with disabilities were led to believe that their lives would change for the better.

Instead, all that the sector got were some references in opening lines of the Budget speech regarding the ‘poor and underprivileged’ sections of society – “Sabka saath sabka vikas (everyone together, everyone progressing). Despite the government’s efforts, they still left this significant population behind.

The only mention this sector finds is in the reference to making of 500 railway stations ‘differently abled friendly by providing lifts and escalators’. The Accessible India Campaign, however, had already taken up this task. Accessibility is much beyond merely lifts and escalators – the latter not being helpful for most persons with disabilities. Specifically, targets were set to ensure that A1 and A and B category railway stations are converted into fully accessible railway stations by July 2016, and 50% of all railway stations ought to be converted into fully accessible ones by March 2018.

In fact, the funding for this does not fall within the railway budget – the Rs 193 crores which were claimed to be ‘exclusively’ for the Accessible India Campaign is budgeted expenditure for 2016-17 under the existing Scheme for Implementation of the Persons with Disabilities Act (SIPDA), which is available for any entity obliged to make their infrastructure accessible under the Act. As pointed out in an analysis by the Equals Centre for Promotion of Social Justice, allocating this fund to the Accessible India Campaign is retrogressive as it limits the government efforts towards providing accessibility to infrastructure and services in a limited number of cities, particularly considering that 69.5% of the disabled population reside in rural areas. Also, lest we forget, without rolling stock that is universally designed, persons with disabilities aren’t going to go very far. There is no mention of this, nor is there any report on the commitment of the previous year’s railway budget promise of ‘divyang friendly toilets‘ at railway stations.

The demand for grants by the Department for the Empowerment of Persons with Disabilities has shown a 9% increase, with most of the expenditure allotted for institutions old and new; only 41% of the expenditure will actually go into demand driven schemes for the welfare of persons with disabilities, even though the new law expands the number of impairments included under such schemes from seven to 19. The Accessible India Campaign and progress therein was absent from the Budget speech and the companion documents, while the SIPDA fund gets a marginal increase of 6.7%. The Rights of Persons with Disabilities Act 2016 creates a national fund for persons with disabilities that finds no mention in the Budget. The statute does not provide for automatic absorption of the SIPDA. The first year of this new law, which seeks to implement India’s obligations under the Convention on the Rights of Persons with Disabilities, does not look optimistic.

While the prime minister appreciated the need for personal mobility and assistive devices – enough to break Guinness World Records while promoting them – the Scheme for Assistance to Disabled Persons for Purchase/Fitting of Aids and Appliances has actually seen a decline in allocations, with a Rs 20 crore decrease from the revised estimates of the previous year. The Artificial Limbs Manufacturing Corporation of India has seen no increase in its allocation of Rs 5 crores over the last three financial years despite research and development around prosthetics progressing by the day.

The government has failed to link Budget expenditure to meaningful implementation of the Bill that it enacted in all earnestness, let alone international obligations. Although the estimates on the number of persons with disabilities in India differ – the WHO estimates 15% of the population to be disabled while the Indian census puts the figure at 2.1% of the population – a 0.0039% of specific allocation of the Budget is nothing but abysmal.

Advocacy efforts must focus across ministries to ensure that their service delivery design is inclusive and accessible to persons with disabilities, as well as with state governments to do their bit considering disability is a state subject in the constitution. The finance minister’s speech refers to outcome based monitoring of expenditure by the NITI Ayog, but restricts it to expenditure of the scheduled castes and tribes sector. In the case of persons with disabilities, the present lack of disaggregated data collection would make any kind of monitoring meaningless – which is why activists harp upon the demand for collation of disaggregated data, including disability, year after year.

All these efforts, therefore, may prove challenging sans government mandate, but influencing this mandate seems difficult given the failure to recognise the disability sector as a lobby of significance. India is shortly due for review of its compliance with the Committee of Rights for Persons with Disabilities’ State Obligations, which includes the allocation of maximum possible resources towards respecting, protecting and fulfilling rights under the convention. Perhaps civil society may consider this a valuable opportunity to galvanise as an empowered lobby to ensure that rights are guaranteed.

Amba Salelkar is a lawyer with the Equals Centre for Promotion of Social Justice. The organisation focuses on policy and budget advocacy towards furthering the rights of persons with disabilities.