Giving back control: What Mental Health Care Bill, 2013 means for the mentally ill

By Asif Kalam

What might it mean for people who live with mental illnesses to be given control over how they will receive medical care? The Rajya Sabha recently passed the Mental Health Care Bill, 2013, which aims to safeguard the rights of people with mental illnesses. It prioritises choices made by patients, and replaces the archaic Mental Health Act, 1987. One of the Bill’s significant new provisions is the Advance Directive, which allows persons living with mental illness to create a document with instructions on how they must be treated and cared for in the event that they are incapacitated by an episode of illness.

The Bill also allows individuals to nominate a representative to take treatment decisions on their behalf if required. Mental Health Review Boards (MHRBs), quasi-judicial bodies that will be set up in every district, will be entrusted with the certification, custody, review, and arbitration of Advance Directives.

Representational image. AFP

"Part of the terror of mental illness is losing control over your mind, and knowing that you will probably lose even more as you grow older,” says Sneha, a 30-year-old writer based in Bangalore, who is bipolar. “To be able to write advance instructions for one’s treatment helps give back some of that control," she adds, when asked about what it might mean for her to be able to make these decisions for oneself. Manisha*, a 26-year-old writer who lives with borderline personality disorder, seems to echo this when she says, “Having a treatment plan in place — even if it’s as simple as a document stating whom to call, what I do not consent to under any circumstances, whom to treat as my next of kin, what my psychiatric and psychopharmacological history is, who my doctors are — would be a level of visibility and explicitness I’d be grateful for.”

Both Sneha and Manisha say that they are willing to go through the process of paperwork to get these Advance Directive documents in place. This is despite how long the process sounds — they both insist that it is important that the directive allows them to maintain control over their treatment. Manisha says she would do it despite not being clear on how the logistics of such a plan would come together. Sneha also mentions that she is willing to and will need to keep updating it, based on the new developments that take place in her illness, its treatment, and her own world view.

Stakeholders we spoke to were in broad agreement that the Bill seems to be a step forward. It has finally decriminalised attempts to commit suicide, and mandates that governments provide affordable, quality, geographically accessible mental healthcare. Vandana Gopikumar, co-founder of Banyan, a mental health NGO for women, sounded hopeful when she said, “I’m happy that the Bill takes into account the large service gap and mandates access to care as a right. This will address the needs of many who live in low resource contexts, who today have to travel long distances to access care, or often forgo treatment in the absence of a functional health and social care system.”

But while the Advance Directive is seen as greatly significant in recognising the autonomy of people for their treatment and care, some policy experts and rights groups are sceptical. Section 11 of the Bill allows doctors and relatives of a person to approach the Mental Health Review Board (MHRB) to revoke or modify the Advance Directive under certain grounds.

Jayna Kothari, lawyer and co-founder of the Centre for Law and Policy Research, argues that the power of Advance Directive is seriously undermined by Section 11. She says, "On one hand the whole provision is to give people with mental illness the right to autonomy and to recognise that they have capacity to take decisions for their own lives. If those decisions that they have made for themselves can be challenged, then you are basically saying that you can make a decision that we can revoke because we know better.”

The grounds on which other parties can challenge an Advance Directive include considerations of whether the person was well-informed, and had the capacity to take the decision. Manisha says, “No matter how distressed or incapacitated I might be at a particular time, I — and the people I trust — know what’s likely to help me and what’s definitely likely to make it worse.”
Kothari argues that in the case of patients who require treatment for other non-mental-health related illnesses, there is no such provision to challenge their decisions, so why is there a lack of patient autonomy in mental health care? “You don’t even raise these grounds for people in non-mental-health situations,” she says.

When asked how she would react if she learnt that her Advance Directive had been overturned, Manisha says, “I’d be unsurprised but bitterly angry. It’s a question of autonomy and self-determination. In some cases this sense of autonomy and self-determination is hard-won. I’d be shattered to realise that having a mental illness somehow translates to my ownership of my life not mattering.”

*Name changed on request.

The Ladies Finger is a leading online feminist magazine.

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The Mental Health Care Bill, which sees mental health care only as a repair job, fails to recognise the value of psycho-neural diversity.

THE HINDU ARCHIVES During a tug-of-war contest in a mental hospital in Kerala, a file picture. It is important that all persons with mental disability are treated as autonomous persons worthy of respect.

By AMITA DHANDA

IN his classic study on famines, Amartya Sen contended that avoidance of famines did not just require food stocks but also the freedom to raise one’s voice against dwindling stocks. To prove the point, Sen referred to China, where people died of starvation just kilometres from well-stocked granaries because they did not have the freedom to speak of their piteous condition. Sen was arguing for the indivisibility of rights and contending that people could not be asked to choose between food and freedom, and that they needed both as the absence of one could result in the loss of the other. Despite Sen’s highly persuasive reasoning, it is often believed that freedoms are the luxuries of the endowed and there is no point in offering a choice to the deprived as it is obvious what they would choose. Material goods and facilities are not accorded greater importance only when issues of hunger and starvation are discussed. They are also seen to be critical for other survival needs. It is often claimed, not just in India, that in order to promote mental health, the development of infrastructure, personnel and services should be given greater importance than the will and preference of the persons receiving the services; that questions of choice and preference can be addressed after a robust system of mental health care has been established.

The piteous condition of the inmates of Berhampore Mental Hospital and the unanimous passage of the Mental Health Care Bill, 2013, by the Rajya Sabha were two pieces of news that were widely reported recently. This simultaneous surfacing of the problem and the solution causes one to ask, will the new mental health care law improve the life chances of those abandoned in these obsolete institutions? Does the Mental Health Care Bill have an exit plan for the inmates of these hospitals? Does it ensure that such institutions will be phased out?

The Bill starts on an ambitious note, promising every person the right to access mental health care and treatment from mental health services run or funded by the government. This mental health care has to be affordable, of good quality, plentiful, available to all without discrimination and, most significantly, “provided in a manner that is acceptable to persons with mental illness and their families and caregivers”. If for a moment it is presumed that the person with mental illness, the family and the caregivers have identical expectations from mental health care, this generic phrase has the potential to forge a link between services and choice. Unfortunately, this has not happened and instead the Bill has proceeded in the opposite direction.

The Bill allows a person, who so desires, to formulate in advance a direction to the doctors on permissible treatment and the manner in which it may be administered. Considering that the legislation makes patient preference in the manner of providing mental health care a right, it would be expected that the honouring of advance directives would be an article of faith. Instead, the Bill designs both the making of the advance directive and its subsequent implementation an obstacle race for the maker. Successful completion of the race does not ensure that the doctors and the family are obliged to obey the directive; both the doctors and the family can bypass the directive by following the procedure provided in the Bill. The discomfiture with following patient preference also comes to the fore when the doctors are exonerated from any liability, which may arise if they follow the patient’s advance directive.

In a similar fashion, the facility to appoint a nominated representative has been converted from a right of the patient to a power of the state. Thus where the patient does not nominate a representative, the statutorily designated list takes over. This is like asking a student to choose her working partner and as she is weighing her choices, a partner is provided and the teacher believes the student was provided an opportunity to choose.

As already mentioned, there was a possibility to construct the mental health care system premised on the preferences of persons living with mental illness. This required policymakers to accord respect to the choices made by them. Yet, the legislation only refers to drugs and treatments devised in allopathy and other systems of medicine such as Ayurveda, Unani, and homeopathy and yoga. No reference is made to the recovery interventions devised by persons with psychosocial disability, be it peer support, open dialogue, family therapy or culture-based interventions such as faith and temple healing, which even the mental health programmes of the country have admitted to provide relief to some persons with psychosocial disability. The Bill does not bar these preferences; but neither does it permit them. And users relying on these services cannot be sure of their choices being respected as the Bill requires persons with mental illness, unlike the rest of the populace, to prove they possess legal capacity. Just the presence of mental illness does not mean that the persons lack legal capacity, but the presence of mental illness is sufficient to question the legal capacity to make contemporary choices or issue advance directives.

So when the Bill refers to an essential drug list or state-of-the-art treatment facilities and medical insurance on an equal basis with persons with physical illness, it is primarily referring to the biomedical interventions provided by allopathy. For other medical systems, the Bill concedes inclusion in the essential drugs list if they have any drugs. Non-drug interventions which are being preferred by a number of people with psychosocial disability have just been ignored. If an ambulance or other means of swift and safe travel is provided to take an individual for the medical or other intervention they desire, then the ambulance service is perceived as support, but if the service is provided to transport an individual to a service they detest, then the home service would be seen as arrest and abduction. If a person with physical illness is provided an emergency treatment and he or she wishes to discontinue it after the emergency is over, they are free to do so. The same freedom is not available to persons with mental illness and this situation has not been remedied by the Bill.

CRPD and the Bill

This is the case even when the Bill is being enacted in order to bring the mental health law in the country in consonance with the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which was adopted by the world body in 2006 and ratified by India in 2007. Equality and non-discrimination is the centrepiece of the Convention and the full inclusion of persons with disabilities within the polity its overarching objective. Singling out persons with mental disability for legal capacity questioning and allowing such disability to be a criterion in procedures ordering compulsory institutionalisation are provisions that are in breach of the equality mandate of the CRPD. In acknowledgement of the fact that the perceptions of the non-disabled world do not match with the lived experience of persons with disabilities, the CRPD was drafted with the active participation of persons with disabilities. Absence of persons with disabilities could cause prejudice to resurface and stereotype to rule. To avoid this consequence, the CRPD expressly obligated the states to make all laws and policies relating to disability in active consultation with disabled persons and their organisations. The two-member team that drafted the Bill as also the Standing Committee for Parliament consulted disabled persons and their organisations and did introduce some amendments in the 2013 Bill on the strength of those representations. However, all submissions asking for recognition of will and preference, ouster of compulsory care and guardianship have been ignored.

What is the consequence of this selective engagement? The Bill makes some commitment in relation to services, essential medicines, and non-discriminatory medical insurance, but these services and medicines are not linked to actual preferences of persons with disabilities but what professionals and practitioners consider suitable. People with disabilities whose preferences are in line with what the professionals suggest stand to gain; others are left in the cold or made to accept whatever is on offer. Nobody asks whether recovery can result from such forced interventions. During the negotiations, persons with mental disabilities testified before the Ad Hoc Committee of the United Nations on how the humiliation of the forced intervention prevented them from seeking any treatment from the formal system.

If force and compulsion closes communication and drives persons into isolation, then is there not a case to legislate dialogue and negotiation?

The Bill has several provisions addressing the rights to liberty, expression, information and the right to legal capacity. However, these provisions primarily provide for procedures by which these rights may be deprived or curtailed. The legislation does not speak of means and methods by which these rights can be promoted, respected and realised. If this effort is not made, then can it be claimed that the Bill upholds the CRPD when the CRPD states that in no case shall a person with disability be deprived of liberty by reason of disability?

The quality of services is known to improve when the users of the service are empowered persons whose voices would be heard. Inmates of institutions, who have the highest stake in improving the quality of services, can do little in the matter as they enter the service voiceless and powerless. Lawmakers are concerned with wrongful admission, and they do not want institutions to be used if services that impose lesser restrictions on inmates are available. And yet there is no obligation to create such institutions. And the responsibility for ensuring that nobody obtains wrongful admission is placed on a Mental Health Review Commission, courts and legal aid. These are all review mechanisms external to the institution, and the Bill has no inbuilt correction mechanism. It has not built alliances with the natural watchdogs of any institution—the inmates themselves.

To go back to the question raised at the beginning of this piece, will the new law help the inmates of the Berhampore Mental Hospital? Despite all the additional resources the Bill promises to pour into the sector, the answer remains a reluctant no. For the inmates of the Berhampore hospital to have a better deal, it was important that all those with mental disability were treated as autonomous persons worthy of respect. If even one person can be forcibly treated or projected as dangerous or incompetent, then all overt, covert and hibernating persons with disabilities can be so treated. By not recognising this reality, the Mental Health Care Bill has failed to create a regime of universal mental health care.

The legislation has not looked at freedom and services as one indivisible whole, and thus services are being created not according to what persons with disabilities want and need but according to what the experts in the field believe they need. The decade of the brain tried to prove that “mental illness” was just a biomedical aberration. It failed. The descriptor “psychosocial disability” on the other hand captured the idea of a differently wired mind which is excluded by social norms, practices and beliefs. The biomedical approach towards mental diversity is concerned with fixing the individual, whereas the psychosocial is geared towards acceptance. Evidently, a robust mental health care law and policy require both. The Bill, in only seeing mental health care as a repair job, has failed to recognise the value of psycho-neural diversity.

With the Bill having such a smooth ride in the Upper House, its passage in the Lok Sabha is assured. However, just because the Lok Sabha has the numbers to enact the Bill is no reason to do so. A psychiatrist colleague has referred to the Bill as a work in progress. I agree. My only submission is to let the progress in the Bill happen when it is debated in the Lok Sabha and not a decade later. There are possibilities of transformation in the Bill, and I hope that those possibilities are seized by the House of the persons so that the most excluded members of the polity get their just due.

Amita Dhanda is professor of Law and Head, Centre for Disability Studies, at NALSAR University of Law, Hyderabad.

‘Recognise mental illness as disability’

 

The Tamil Nadu Association for Rights of All Types of Differently Abled and Care Givers has called upon the government to recognise mental illness as disability in need of government disability assistance. A resolution was passed to this effect at TARATDAC State Conference held here on Friday.

The resolution also called upon the State Government to implement the Government Order 27 that recognised 40 per cent disability and relaxed rigid norms for differently-abled assistance.

According to TARATDAC, the GO was passed in February following sustained campaign by the federation of disability rights groups. However, it is yet to be implemented. Also, disability assistance is being disbursed through Revenue and Differently-abled Welfare Department following two different guidelines and norms.

These variations should be removed, and assistance should be disbursed through the differently-abled department to all differently-abled persons.

Similarly, 40 per cent leprosy should also be considered for disability assistance, the resolution said.

According to TARATDAC, disability assistance of Rs.1,500 is issued under the category of ‘severe disability’ to those with over 75 per cent bodily disability. But, the same is denied for those with 75 per cent visual or hearing impairment.

The variations in disability assistance eligibility should be removed, the resolution said.

The TARATDAC also pledged their solidarity with the September 2 nation-wide strike of All India Trade Unions.

According to TARATDAC, the Centre has not yet shown any signs of bringing into force a Disability Rights Act, as promised by during the 2014 elections.

The resolution also alleged steady slashing of budgetary allocation for the differently-abled.

Despite Supreme Court’s directions, 3 per cent quota for differently-abled was yet to be enforced in the government jobs, the resolution said. TARATDAC also recorded that the allocation of Rs.200 crore under the Accessible India Scheme was negligible.

4 Things You Should Ask Yourself Before Sharing Inspiration Porn On Social Media

Social media accounts and news outlets foam at the mouth to fill themselves with cell phone videos of such prom-posals, even though these do the polar opposite of normalizing disability.

Social media accounts and news outlets foam at the mouth to fill themselves with cell phone videos of such prom-posals, even though these do the polar opposite of normalizing disability.

Facebook posts can easily shape-shift into 21st​-century sideshows.

Spring is here, meaning prom season is upon us. As much as my 33-year-old self loves the vicarious joy in seeing what the kids are into — which is decidedly not French twists and chokers anymore — I shudder at the thought that my news feed will soon be inundated with a certain kind of prom-posal that stresses me out.

The kind of stories and videos I’m talking about are ones you’re surely used to seeing in your own feeds: ones where a person with disability is asked out to the big dance.

You know the scene: quarterback of the football team gives Girl With Autism a cookie cake frosted with the question “Prom?” Everyone claps. Video goes viral.

These pieces tend to spread because of the warm fuzzies they give the general population. However, as a girl who happens to be in a wheelchair, these videos make me very uncomfortable. Without fail, the person doing the asking is framed as a hero, and sometimes they are even interviewed on a talk show (if their story was especially popular).

The ask-ee? Well, they’re usually diminished to the recipient of a charitable act.

For a while, this breed of condescension was relegated to daytime talk shows and outlets with the journalistic integrity of Inside Edition.

But then social media seeped into every crevice of mainstream media. Clips about people with disabilities doing typical things are appearing on the nightly news, well — nightly.

Depending on how these stories are presented, they, more often than not, fall under the umbrella of “inspiration porn.”

This whole epidemic has led me to roll my eyes and yell expletives at my screens more times than I can count. If you’ve ever seen something akin to the following, you’ve definitely witnessed inspiration porn.

“This boy is blind, but can sing like an angel — watch his inspiring performance!”

“This woman born without legs just had a baby! Isn’t it a miracle?”

Meanwhile, I am usually on the other end of these, shouting the seemingly obvious: “What does vision have to do with vocal ability?” or “Legs aren’t attached to a uterus; why can’t she have a family?”

Given that I was a communications major, I get why these types of headlines are so accepted (even if they are nonsense). People like to feel better about society and hear something that isn’t terrorism or political infighting.

All I wanted as a high school junior was to do normal teen things and not have my differences pointed and “awwwwed” at en masse.

 

However, these seemingly innocuous stories are, in a very subtle way, reducing the subjects to their base level, judging them solely on their disability, and assuming that they are incapable of the same things as their peers, like hobbies or love.

Sure, exposure to people who are different is definitely a good thing, but the old adage, “Any publicity is good publicity” doesn’t really apply when you see that it could easily make one party feel less-than. Never is that weird saccharine spotlight more glaring than in the newest addition to the inspiration porn genre: the disability prom-posal story.

When I was in high school, I went to prom… with a date. Like 100% of teen girls, I was maxed out as far as insecurity and skewed self-image were concerned. Imagine my mortification if I, a wheelchair user, had been asked to the prom by an able-bodied friend — and received national attention because of it.

All I wanted as a high school junior was to do normal teen things and not have my differences pointed and awwwwed at en masse.

If a news source had hinted that my date was engaged in some kind of bizarre community service, basically insinuating that I was the most undateable creature on the planet, I likely would have taken the (very mature) path of locking myself in my bedroom and crying until graduation.

Kids today don’t have the luxury of flying under the radar. Social media accounts and news outlets foam at the mouth to fill themselves with cell phone videos of such prom-posals, even though these do the polar opposite of normalizing disability. In fact, their popularity is immensely damaging to our uphill struggle to be treated not as a spectacle, but just like anyone else.

If a person asks their classmate with a disability to prom, it should be because they want to go with them, or, perhaps, in part because they feel it’s a nice gesture — not because of public recognition and praise that are both peppered liberally with words like “amazing” and “brave.”

Ugh. It’s enough to make me rip my hair out.

(But then, who knows? Maybe the “story” of my rocking a bald head and a wheelchair would be trending. I can see it now: “You go, girl! Brave young woman shows us the true meaning of inspiring beauty!”)

I get it. Healthcare and transportation and the overall status of rights for people like me suck, so this seems like small potatoes on the spectrum of disability issues.

But, unfortunately, I think it is reflective of a bigger problem. Often, when people with disabilities are portrayed as being “just like anyone else,” they are more or less being made into a curiosity, which only further highlights their differences. Facebook posts can easily shape-shift into 21st​-century sideshows.

Here are a few things to ask yourself before you hit that “share” button:

  1. How would I feel if I were the recipient of the kind of attention given in this story?

  2. Is the thing the person is being lauded for even directly affected by their disability (e.g., a child who is deaf being good at baseball)?
  3. How is the person depicted? Are they treated as an equal?
  4. Whom is the story serving? What is the intended purpose of the story?

I know it’s going to happen every year like clockwork, but just once I would love the headline to read a bit differently:

“Girl who happens to be in a wheelchair gets asked to prom… because she’s super fun to be around!”

Disability Representation and the Problem with “Inspiration Porn”

Image result for inspiration porn

Inspiration Porn

Imagine waking up and realizing that your right hand looks, moves, and feels completely unlike your left hand. You stand up and walk over to your dresser and notice you are limping, but decide to ignore it and get ready for your day. As you lift the shirt you’ve chosen to wear and pull it over your head, your right arm suddenly stiffens, and it takes an additional two minutes to get your arm through the armhole. Once you’re dressed, you figure that the worst is over — until you go to tie your shoes. Your fingers on your right hand cannot grip the shoestring long enough for your left to do most of the work. L

ater, you leave to meet a friend for lunch, but when you step outside you notice that people you don’t know are staring at you, wide-eyed and open-mouthed. You try your best to avoid their gazes as you enter the restaurant. Your knees begin to buckle, and you know you’re going to fall.

All of this, which might sound unfamiliar to you, is my everyday reality. Strangers who see me often let their curiosity get the best of them. They watch me walk down hallways and up store Image result for inspiration pornaisles, their eyes on me, expecting an explanation. I could tell them about my cerebral palsy, explain that this is a disability I was born with, but there is never enough time to say the things I wish to.

No, I’m fine, I really don’t need your help.

I don’t know the exact type and name of the cerebral palsy I have.

No, you don’t need to speak to me slowly. I understand you just fine.

Sometimes I feel guilty, cowering under beady eyes. I feel guilty for the desperate way in which I do desire to explain myself to complete strangers, and then I remember that I shouldn’t have to.


Growing up I didn’t have access or exposure to people like me. There was no one with a disability acting on television, no songs I could listen to or books I could read that might have reflected my life back to me. Couple that with being a Black girl with a disability, the representation simply wasn’t there. The only disabled folks I ever saw on TV were the ones placed in froImage result for inspiration pornnt of a camera at telethons promising to raise money for disability research — the same telethons that were often criticized by people with disabilities for their negative attitudes about disability. We never watched a full telethon, but sometimes we caught them in between commercials. I’d sit impatiently on my living room floor, watching as the host stood beside a person in a wheelchair and told their story, sometimes crouching down beside them as they spoke in a belittling, babying tone. I remember thinking that these people with disabilities, the people the telethons choose to show and exploit, were not the only types of people with disabilities.

There is a sad truth known throughout communities of people with disabilities: exploitation. In lieu of telethons, a plethora of videos now make their way across various social media sites. These popular videos, known to some as “Inspiration Porn,” use the stories of people with disabilities and cut them into thirty-second clips with a dismissive and harmful caption along the lines of ‘Wow! I need to be thankful for what I have!’ Oftentimes these videos are shared with me by well-meaning friends and family. They expect me to be amazed by the man who can drive with his feet, the lady who is raising three kids without her legs and arms, and the child who excels at painting with a brush held in his mouth. These videos usually precede some sort of comment about how I shouldn’t feel upset over the hand I’ve been dealt, because other folks have it worse.

Here is the thing: the hardships of other people with disabilities don’t make me feel better. These videos don’t amaze me. They make me angry, because they are packaged to alleviate the misguided guilt of non-disabled people for not having disabilities. I used to announce that I was proud of these people with disabilities and of their innovation until I learned how ridiculous that very idea was. They never asked for my pride, and they don’t need it, because the act of survival doesn’t warrant the same immediate celebration for folks without disabilities. My loved ones who show me these videos don’t understand why they are so harmful. They’ve never stopped to ask themselves why they see a mere adaptation to circumstance as inspirational.

Image result for inspiration porn

Disability Representation and the Problem with “Inspiration Porn”

Most of the “inspirational” videos exploit the idea of attitudinal “inspiration,” the expectation to always “look on the bright side,” but that is just not the way the spectrum of human emotion works. No one is happy all the time, everyone has bad days, and it shouldn’t mean that their stories don’t matter. These videos feed the dangerous and dehumanizing expectation that all people with disabilities should strive to achieve behavioral “inspiration” — by adapting to the world; i.e., driving cars or cooking with our feet, doing our hair with the use of one arm. We are seen as extraordinary for these very things when they are really just daily acts of living for many disabled people. These behavioral “inspirations” also lend themselves to the idea that those who have not adapted in the same way are somehow less deserving of support or praise. Those who do not comply are to be ignored and dismissed.


There is still little to no genuine media representation for people with disabilities, especially those of us who are also people of color. At 24, I’ve now stopped to ask myself how the lack of proper representation has shaped the woman I am today.

I wish I could say that I love this disability, that I have grown to accept it, but I haven’t. Not yet. I still pick apart the things I can’t change: the permanent limp, the aching knees, the hand with curved fingers. All the things strangers seem to notice about me first are also the things I used to wish away. When I go out in public, I feel like the main event at a circus, the lion without a tamer, pulling the attention of passersby, nervous as they fill the surrounding seats with baited breath. But I do not want to put on a show, I just want to blend in.

The older I get, the more my anxiety in crowded spaces builds. I can’t help the way my heart races if a set of eyes I do not know lingers a moment too long, or if the question “What accident were you in?” falls from the chapped lips of store clerks and strangers. Often these strangers demand conversations about disability that I never wanted to have. They assert a false dominance, or state their unsolicited opinion. Once, while headed to my college senior capstone class, I was stopped by a woman who insisted on helping me with a blue folder that had slipped briefly out of my right hand. After reassuring her three times that I was fine on my own, she became indignant, blocking the snowy path to my building with her worn-out boots and demanding that I be thankful for what she considered her “random act of kindness.” I let her yell, watched as her right hand found her hip and her nose reddened from the cold. I let her yell, tightening the grip on my folder. She soon walked away in a huff, and I spent the remainder of the day wracked with guilt, wondering if I should have just let her help me even though I didn’t need it.

My disability gives me experiences, confrontations, and responsibilities that I didn’t ask for. It is a constant reminder of the societal pressure to rise above bad days, both physical and mental. I am, after all, an “inspiration” — or so I am told. But I don’t want to be an inspiration, especially not the kind other people expect me to be. Their “acceptable” versions of people with disabilities are expected to be happy and grateful, and if we aren’t then we are “bitter cripples.” We are then cast away, dismissed for being “mean” and “angry,” because we don’t conform to the smiling, excited, happy-to-be-alive personas that people without disabilities tend to feel most comfortable with. There is nothing wrong with being a happy and grateful person with a disability, but there is something wrong with the exploitation that unfair expectations breed.

I’m often resentful of this body that I am housed in. I am not able to go through life constantly wearing my disability like a badge of honor. I used to have a reoccurring dream that I was a snake, eager to shed this skin to arrive anew, to rid myself of an arm and leg that felt like a parasite I couldn’t shake. I used to want a second chance, a second body to jump into, so I’d know what I was missing. Sometimes, I still do.


Around this time last year, I made a list of all the things I didn’t like about myself. It was 21 items long. Then I sent my closest friends a text message that read: “I have to ask you a serious question. I want the truth, so don’t sugar-coat it. How long did it take you to see past my disability after we met?”

I do not know what answer I was expecting. Maybe an affirmation of what I always thought was true, that I am an embarrassment to my friends, that I held them back in some way. I expected them to tell me that my disability was too much for them, the way it often is for me. I received variations on the same answer: It was never a big deal to them; it was a thing they noticed at first, and then it became something they didn’t focus on.

I felt relieved by their answers, but now I am unsatisfied with my own. Now I find I want to belong to a real community of disabled folks. I want to ask them how they learned to like and love themselves. I want to try and love myself, too, one day.


When a tweet of mine about including disabled girls in feminism blew up, my good friend messaged me and asked, “Is it weird/wrong that I don’t see you as disabled, I just see you as a person? I completely forgot about your disability.”

I paused for a moment. I know this friend well; we talk often about feminism and politics, pop culture and the college classes that changed how we saw the world. We sat behind phone screens with a three-hour time difference between us, and had the best conversation about disability I have ever had with a non-disabled person. I explained to them that this idea, while its intent may be complimentary, is actually erasure. Telling me or other people with disabilities that our disability is something to forget is just as harmful as when my Blackness is erased with the claim “I don’t see color.” The problem with dismissing or ignoring these things about me is that doing so feeds the idea that we should ignore the things that make us different — that we should feel shame and guilt just for acknowledging that we don’t all share the same privileges or lived experiences. My Blackness, like my disability, is something that everyone sees, and even on days when I wish the latter to fade away, it will always be there.

When parents scold their children for looking at me or asking me questions, I often urge them not to, because I want to be the one to tell my story. If we don’t allow people with disabilities to tell their own stories, we run the risk of letting “inspiration porn” be the only access most other people have to us. If we aren’t able to tell our own stories, perhaps we will be erased from history, our truth fading away one Facebook video at a time.

I do not want to be an “inspiration” because I’ve found a way to adapt and survive. If I am an inspiration, let it be because my words inspired someone else to put pen to paper for the first time in a long time. Let something I’ve said, created, or nurtured be the thing that inspires people. These are the things I am most proud of. These are the things I want to celebrate on my own terms.

Keah Brown reads a lot of books and watches far too much TV. Her work has appeared in Cactus Heart Press Literary Magazine, Femsplain, Saturday Night Reader, and Atticus Review, among other publications.

19,000 Mentally Ill Patients Living In Hell, Shackled And Locked Up In Indonesia

Woman shackled to her bed

A 24-year-old woman is shackled to her bed at the Bina Lestari Healing Center in Central Java. Shackling mental health patients is illegal in Indonesia but the practice continues. (Photo : Andrea Star Reese | Human Rights Watch)

Patients with mental disabilities, unable to take care of themselves, should ideally receive special care and attention. Unfortunately, in Indonesia, a large number of those with special needs are living in unacceptable environments and are tied and locked up instead of being properly cared for by their families or primary caregivers.

Human Rights Watch (HRW) reports that about 57,000 patients in Indonesia with psychosocial disabilities had been shackled and locked up in small spaces at least once in their lives.

In 1977, the Indonesian government banned the practice of “pasung” or putting patients with mental health problems in shackles, but many family members, healers, and institutional staff still bind and lock up these patients inhumanely. The organization’s report notes that according to government data, about 18,800 patients with mental health problems are still shackled and locked up by their families and health care providers.

“Shackling people with mental health conditions is illegal in Indonesia and yet it remains a widespread and brutal practice,” says Kriti Sharma, a disability rights researcher at HRW and report author.

“People spend years locked up in chains, wooden stocks, or goat sheds because families don’t know what else to do and the government doesn’t do a good job of offering humane alternatives,” she adds.

What Patients Go Through

The HRW interviewed 72 people, both adult and children, all of whom have psychosocial disabilities. Interviews with caregivers, mental health professionals, family members, government officials, institutional heads and disability rights advocates were also conducted to give a holistic understanding of the present condition of the patients.

In addition to the interviews, the HRW team also visited 16 institutions, including faith healing centers, social health care institutions and mental hospitals. During these visits in the five provinces of Java and Sumatra, the team documented 175 cases of patients who are locked up, shackled or recently freed.

“I used to be tied up at home with a plastic rope. My heart broke when they chained me … I was chained when I first came [to Galuh]. I get chained often – at least 10 times since I have come because I fought with the others. It can last for one day to a week,” said Rafi, a 29-year-old patient at the Yayasan Galuh Rehabilitation Center in Bekasi.

For a toilet, Rafi had to use the drain in the same room he was kept in. He also experienced physical abuse from the center’s staff.

“Tell the government, I want to go home,” he said.

In another interview, a father confided that he locked his daughter up after bringing her to a faith healer because she was destroying their neighbors’ crops. He also said that they tied her up because she tried to dig her way out of the room. The patient endured 15 years of being shackled and locked up in the room where she slept, ate, urinated and defecated before she was finally released.

Government Efforts

In an attempt to curb the practice, the Indonesian government offered some campaigns like the anti-shackling campaign and a new mental health law that integrates mental health care along with primary health care.

The government also formed teams of medical practitioners, government institution staff and government officials that are responsible for releasing shackled and locked-up patients. Unfortunately, the local implementation moves slowly due to a decentralized Indonesian government.

Dr. Irmansyah, Indonesia’s former director of mental health, spearheaded a campaign in 2010 that purports to eradicate the practice of shackling by 2014. The ambitious program’s deadline is now pushed to 2019.

In an interview with Fairfax Media, Irmansyah shared that in 2015, about 8,000 patients were relieved from shackles. He equally acknowledges that much needs to be done.

“What is lacking is the unity of action. Ideally there should be standardized procedure in the treatment of mental health patients from when they are admitted to hospital to the day they return to their families,” he says.

Another problem that the former health minister wishes to address is the lack of consultation from the families of the patients. He believes that only 70 to 80 percent of people afflicted with schizophrenia are brought to hospitals for consultation due to social stigma.

“They will go to traditional healers instead who will spit on the patient’s face or ask them to bathe using flowers but in the end they remain mentally ill,” says Irmansyah.

The current head of disabilities issues, Nahar, states that shackling persists because of the uncertainty in the part of the family members.

“The main problem is fear, fear of what could happen if a shackled person is released,” he says.

An In-Depth Look At Indonesia’s Mental Health Situation

This report sheds light on the current mental health situation of Indonesia. At present, Indonesia only has 600 to 800 psychiatrists to cater to the needs of 250 million Indonesians. This means that there is only one psychiatrist for every 300,000 to 400,000 persons. Additionally, significant data from the government show that in 2015, the health budget is only about 1.5 percent of the total.

The HRW report also raises concern on the length of stay of patients in a mental institution. There was one documented patient who stayed in an institution for seven years, while another was locked up in a mental institution for 30 long years.

Overcrowding and hygiene issues are also alarming as some rooms are infested with pests like lice. Some of the patients also have scabies that are left untreated. In a center in Java, 90 women are confined a room that is fit for only 30 persons.

Living in murky and crowded rooms is just one of the problems of these patients as they can also become victims of physical and sexual advantages of their caretakers and other people. Some of the patients also undergo restraint, seclusion, electroshock therapy without anesthesia and forced contraception without consent.

Recommendations

The Human Rights Watch recommends that the Indonesian government strengthen the implementation of the ban on shackling and by making amendments to the 2014 Mental Health Act to allow patients with psychosocial disabilities to experience the rights that fellow Indonesian citizens enjoy.

Furthermore, the report also encourages the government to undergo routine inspection of state and private mental health institutions. Sharma also recommends that the government and caregivers talk to those who are plagued with mental disabilities to know their stand on the treatment process.

Sharma expresses concern on the future of these patients needing special care.

“The thought that someone has been living in their own excrement and urine for 15 years in a locked room, isolated and not given any care whatsoever, is just horrifying. So many people told me, ‘This like living in hell.’ It really is,” she says.

Tech Times

India shines light on the plight of the disabled

Go, inspect the toilets in the building, the trainer said, handing out a 17-page checklist and a tool kit to the students. She told them to measure the width of the wheelchairs, height of the ramps, weigh the force of the door, and look for Braille signage. “Even if a building has an accessible toilet, it usually is used as the storeroom or a janitor’s room,” one student said. “We experience the horror every day. But now we will rate the system.”  The students, mostly people with disabilities, were attending a training session to become accessibility auditors this summer when the government will begin a first-time audit of 2,500 public buildings across India.
Prime Minister Narendra Modi’s new push for accessibility has galvanized a disability rights movement in a country with a notably poor record on inclusive infrastructure. Experts say that the Accessible India initiative launched in December focuses for the first time on removing the barriers in the environment — a radical cultural shift from the charity and pity model that has long dominated how Indians have viewed people with disabilities. Indians most commonly have served the disabled with a sympathetic helping hand and monetary donations but rarely envisioned a world in which they could function independently. That has left the more than 26 million people with disabilities in India facing inaccessible roads, buildings, schools, television programs and information. And activists say it places India at a stage similar to where the United States was in the 1960s. There are roughly 1 billion people with disabilties worldwide.

“Not too many people in India even know what disability access means. This is the first ever systematic effort to create a culture of accessibility,” said Mukesh Jain, joint secretary of the Department of Empowerment of Persons With Disabilities. “We just have 18 auditors today. We have to develop a pool of at least 1,000 trained accessibility auditors in the next four months.”

Over the next year, Jain hopes to inspect public buildings, airports and railway stations, redesign government websites and open a sign language university.

“Almost half a century was a washout for Indians with disabilities. It was only in 2001 that India began counting disabled people in its census,” said Javed Abidi, chair of Disabled People’s International. “And now, top government officials are discussing disability on a weekly basis. This has never happened before.”

In a recent Sunday morning radio address, Modi even suggested replacing the word disabled in Hindi with “divyaang,” or “people equipped with a divine ability.”

But despite the new effort, activists say change will be neither swift nor easy.

A new disability rights bill to replace a 1995 law has been pending in Parliament since 2014. The bill proposes raising the number of disabilities from seven to 19, guarantees job set-asides and imposes six months in jail for violators of the law. Last month, there were reports that the government may drop mental illness from the disability list. But after protests, the government quickly denied the move.

On a recent morning in New Delhi, table tennis player Suvarna Raj’s wheelchair had to be manually lifted by an onlooker because the pavement tiles were broken at a bus-stop that was officially declared accessible. There were no Braille signs or audio announcements of the bus schedule. And when her bus finally arrived, it stopped at least 25 feet away from the designated landing space where wheelchair users wait.

“The sidewalks are either broken or blocked by vendors and other hurdles like open manholes,” Raj, 35, said. “On most days, I am forced to move my wheelchair on the road, competing with fast-moving traffic for space. I literally carry my life in my palm every time I leave home.”

When she reached the train station, the counter for wheelchair users was so high that the clerk at the window did not see her. She kept banging on the wall to draw his attention.

Recently, Raj was denied entry into a New Delhi stadium to watch a wrestling match. She said the police said her wheelchair was a security hazard and the stadium had no ramps.

In January, a university professor said she had to crawl on the New Delhi airport tarmac from the aircraft after a long wait for a wheelchair.

But the biggest hurdle is the railways, which carry more than 23 million passengers daily. Few railway stations have ramps and Braille signs.

“The door of the coaches are too narrow and high. You just cannot enter a train with dignity,” Abidi said.

Last month, the government said it would consider expanding the width of the doors in the new coaches. Over the next year, the government will also build one accessible toilet in every station in big cities.

Although India passed its first disability law in 1995, it was only when the renowned physicist Stephen Hawking visited in 2001 that officials scrambled to place ramps at four monuments in the capital. Despite a court order requiring public buildings to be accessible, implementation moved slowly. The Taj Mahal got permanent ramps only in 2009.

But the capital’s historic sites are still generally not user-friendly places for the disabled.

“The accessible toilet is often far away from other toilets. It is locked, the key is missing, we have to request the staff to open it,” said Neha Arora, founder of Planet Abled, which promotes tourism for people with disabilities. “The door knobs are not easy, and there are no grab bars inside the toilet. And the Braille information panel is mere tokenism.”

Meanwhile, many say they do not like Modi’s suggestion for a new name.

“Right now we are below the ground level as far as rights and dignity go,” said Mridu Ram Goel, a wheelchair user who heads an advocacy group called Handicare. “First bring us to the level of earth. You can call us celestial later.”

Washington Post