RESHMA VALLIAPPAN

India,

Reshma is providing the early voice and leadership for persons living with mental illness to speak and advocate for their own rights. She is building a global community of people, both those living with and without mental illness, who are committed to this idea of self-advocacy and can become a powerful voice to respond to issues of stigma and injustice.

This profile below was prepared when Reshma Valliappan was elected to the Ashoka Fellowship in 2014.

INTRODUCTION

Reshma is providing the early voice and leadership for persons living with mental illness to speak and advocate for their own rights. She is building a global community of people, both those living with and without mental illness, who are committed to this idea of self-advocacy and can become a powerful voice to respond to issues of stigma and injustice.




THE NEW IDEA

Reshma is laying the foundation for the creation of role models from among persons living with mental illness, thereby creating a culture where they are able to voice their perspectives and become self-advocates. Drawing from her own experiences as a user-survivor, Reshma is bringing about a paradigm shift in how society perceives and understands mental illness. By building on-line and offline safe spaces for persons living with mental illness to share their stories, reflect on their experiences and choose their own paths to recovery, she is challenging the existing construct of recovery and reinstating persons with mental illness with the agency to carve and manage their well-being. Through this process, individuals are able to regain and enrich their sense of self by changing their self-perspective from one that is negative to one that is positive. They are also able to focus their identity separate from their illness.

Simultaneously, Reshma is bridging the constructed gap between those considered ‘normal’ and those suffering from mental illness, by creating shared spaces with the larger community. She brings issues of mental health into the open by having conversations in public spaces to engage women, children, caregivers and youth to connect, share their stories, question and reflect on their understanding of mental illness. Using art, role play, martial arts and other creative methods, she breaks down stereotypes both for persons with mental illness and people who claim they are unable to see the person behind the ‘label.’ Through this process, she is building a society that is capable of embracing those with mental illness in the way they want to be embraced. She also leverages such an educated and empathetic community of citizens to respond to issues of stigma and injustice and also bring in the user-survivors perspective into policies, with the long-term aim of advocating for full legal capacity of persons with mental illness.




THE PROBLEM

Even after decades of advocacy, stigma against persons with mental illness remains a huge problem. This can be largely attributed to the reason that many - psychiatrists, caregivers and activist- tend to speak on behalf of the mentally ill. However, people suffering from mental illness have not found a voice or space to express themselves. Other major rights-based movements against stigmatization and discrimination have been led by insiders. In the women’s rights movement, women were at the forefront; in the movement for rights of people with physical or visual disabilities, the physically or visually impaired were the leaders and similarly, the LGBTQ community led the movement for rights of the LGBTQ. Each of these groups has provided the authentic voice that brings in a new perspective and kickstarts a movement.

However, for the mental health movement, there is a lack of role models and leadership from among people suffering with mental illness. The lack of role models, leadership and perspective of survivors can be largely attributed to the failure of existing approaches to truly empower the mentally ill. Existing approaches strip them of their agency to understand the experiences mental illness brings or manage their health. Seen only as a medical or a biological problem, doctors follow a defined system of protocols. To make them ‘normal,’ the mentally ill are treated with medicines or ECT and only patients who can afford to are given counseling. The medical approach makes no effort to understand the person behind the label and explore ways in which he or she can become an independent person. Under the current form of ‘treatment,’ it is acceptable for a person to be dependent on medication and familial support all their life. They are almost always confined to the four walls of their house or institution or are supervised by caretakers. Rarely empowered to express themselves or understand and manage their well-being, they remain sedated for most of their lives to appear to be ‘normal.’

However this ‘normalcy’ remains hypocritical, as they are not legally or socially allowed to go to school, get jobs, marry or have a functional life. A person of ‘unsound mind’ under current laws lacks any legal capacity to contract. The prevailing legal framework is grounded in a rationale of paternalistic care. It addresses adults with intellectual disabilities as lacking the ability to love; make friendships; marry; own, inherit, and transfer property; and to make decisions that affect the status of their own lives.

The construct of ‘normalcy’ and ‘madness’ by society and the medical fraternity further alienates the mentally ill. The growing acceptance of differently-abled people, and the subsequent moves to make work and public spaces more inclusive for other forms of disability (including developmental disorders), has not permeated to the mental health space. This is because the identity of the mentally ill is linked only to their condition. A person suffering from schizophrenia is not seen as anything more than a schizophrenic. There is no effort to understand the person behind the label, see their differing capabilities and enable them to constructively engage with society.

The vicious cycle of the legal and social exclusion of persons living with mental illness (PLMIs) coupled with the lack of any role models from the community, affects the ability of PLMIs to talk openly about their mental health and gain the confidence to be accepted for who they are. Even today there are less than 10 people in India across sections of society, who will openly identify themselves as PLMIs or as user survivors, who have gone through a certain program. Stripped of their personhood by law and society, persons with mental illness have been unable to come out, engage with society and articulate their perspectives. And even when they do, their opinions and thoughts are shunned as coming from someone who is ‘mad’. The lack of the survivor’s’ perspective on issues affecting the mentally ill, as well as a lack of role models, has not only reinforced the stigma but has also created solutions that do not adequately address the issues of persons with mental illness.

Today, it is estimated that one in four people have depression and one in 100 have schizophrenia. Given the growing cases of mental illness, there is a need for a paradigm shift in how society perceives, deals and accepts mental illness. There is a need to devise strategies to ‘prevent’ mental illness (that is completely absent in the current context) as well as explore non-traditional approaches of dealing with mental illness that can truly empower the mentally ill.




THE STRATEGY

Reshma’s personal experience as a user-survivor made her realize that the only way the voices of PLMIs would be heard and the stigma against them end is if they ‘came out’ and openly discussed issues around mental health. To lead by example, she partnered with a filmmaker to share her personal story as a film, “Drop of Sunshine.” Aired on national television in 2011, the film helped spread Reshma’s message. Screened in smaller groups, it also helped open conversations with multiple stakeholders and triggered conversations that pushed people to reflect on how they understand mental illness.

Today, through the Red Door, Reshma uses her voice and story to empower other PLMI’s to become self-advocates and engage a wider group of citizens to cultivate empathy for issues surrounding mental health. Rather than through confrontation, she creates safe spaces that allow conversations between a diverse group of people to share their own voice.

For instance, Reshma started an active online group that has over 800 people from around the world who share and discuss experiences and opinions daily. With them and in other offline groups, she focuses on celebrating differences and creating a space where recovery is not about bringing everybody to a nebulous notion of ‘normalcy,’ but a level of stability that feels real for the user-survivor. By sharing her own experiences in managing mental illness and difficulties she faces, she gets them to introspect on their own coping strategies. For instance, she shares how art helped her express herself. She also shares how instead of trying to subdue the voices with medication, she finds it easier to befriend them by listening and conversing with them and making them her allies. She also shares how reading about her condition and maintaining a diary on her feelings and symptoms has helped her manage her wellbeing. Reshma is not ideological about solutions and she is cognizant that what may have worked for her may not work for others. By sharing these experiences and the challenges she continues to face, she is focused on enabling PLMIs on discovering their identity beyond the label and rethink what ‘recovery’ means and discover solutions that would work best for them. Reshma believes that this reflective process of enabling PLMIs to take charge of their own lives is the first step to unleashing their full potential as role models.

Reshma believes self-advocacy is critical to change the paradigm of understanding at the macro-level. To bring a stronger voice to other user-survivors, Reshma also started a bi-annual magazine “Madness: the Cultured Culture” as a platform to talk about mental illness. While it focuses on giving a voice to PLMIs, it also invites survivors, caregivers and psychiatrists to share their perspectives. She is now looking to get advertisers and make this a subscription-based magazine. Through this she hopes to help generate income for persons with mental illness who are writers. While she is laying the foundation for new role models by promoting PLMIs to take charge of their illness and to stop stigmatizing themselves, she believes this magazine will also help promote these new role models over time by increasing the number of survivor voices

Seeing that acceptance from persons outside the community is often more powerful for the user, Reshma believes it is essential to take conversations around mental health to a wider community. Rather than conduct awareness campaigns or discuss issues in constructed groups, she takes conversations or ‘Red Door Events’ to citizens in their spaces - whether that be public parks, offices, cafes, schools or railway stations and out into the open. Sometimes, Reshma and her peers paint in a park and invite people to join them. At others she uses martial arts, music or dance to get children in shelters to open up. This non-didactic approach also helps her proactively reach out to people who may be suffering from mental illness, but are not in a frame of mind or knowledge to reach out to an authority figure, to a CSO, doctor, psychiatrist or a helpline.

At these “Red Door Events’, Reshma takes communities through carefully designed creative formats that enable them to reflect and share their issues and also revisit their understanding of mental illness. Recognizing that ‘expression’ is key, she creates an open and safe environment that lets a person be themselves and without any judgment or advice. She sees this as the first step to help people reflect and gain confidence in their own being and identity. It also helps them connect with someone around them and come out of their sense of isolation. In one instance, she partnered with the Cross Country Motor Club, to get bikers to come and engage with adolescents at risk of drug use. As compared to conventional authority figures, these adolescents were more open to listening to messages from people they looked up to. The bikers spoke about traveling, biking and the need to maintain good health. This was more effective to open honest conversations and influence the minds of adolescents. In another instance, she got people in a park to reflect on who their imaginary friends were- for some it was a cigarette and for others it was pet. She then partnered them up to be each other’s ‘imaginary friends’. This not only allowed them to connect with each other and share their thoughts in a free and imaginative environment but also empathize with persons suffering from schizophrenia.

In all these events, Reshma weaves in her own story and experience. Very often this helps builds trust with them to share their own stories, during the event or after. For many people this is the first time they are meeting somebody who is schizophrenic. She encourages them to ask questions that may even be seemingly inappropriate. For instance, what is it like to hear voices? She believes that this is essential to help those without mental illness understand a disability they cannot visibly see.

Reshma’s ability to listen, share her own experiences and assist others in finding a creative outlet for themselves helps build a basic human connection for people who feel extremely isolated. She believes even if isolation cannot be prevented, it will help people become more aware and give them the tools to fight it when it comes or support others when the time comes. She is now seeding this thought process in others who believe in the idea to also organize “Red Door Events” in their own cities and spaces. Today, two other individuals are organizing these events in cities like Hyderabad and even Los Angeles. A group of bikers in the Cross Country Motor Club are also doing Red Door Events as they travel.

Reshma has been a part of several consultations and conferences that have discussed policies affecting the mentally ill. Having studied national and international laws affecting the mentally ill, she is engaging in several networks to provide the survivors’ perspective so they may ultimately advocate for full citizenship and agency. She is now also writing a book that details her story, perspectives and ways in which she manages her well being, through art, work and embracing her illness.




THE PERSON

Reshma, though of Indian origin, spent most of her formative years in Malaysia. Physically active and energetic, Reshma took part in different sporting activities, martial arts and dance from a very young age. She was among the few Indians on the basketball team at the national level.

However, her hyperactivity, short attention span and rebellious nature also got her thrown out of class and punished very often. She was made to feel ashamed for dressing like a boy, smoking and questioning her sexual preferences. Lacking any sense of belonging, she ran away from home several times.

When she took to drugs at the age of 16, her parents sent her back to Pune, India. Reshma visited counselling centers in her college, where her bouts of aggression were attributed to drug abuse. Later, at the age of 22, she was diagnosed with paranoid schizophrenia. Her doctors told her parents that she could never lead a functional life and independent life.

For a few years, Reshma was under the influence of medication and remained in the confines of her home. During this period, she felt completely stripped of her identity. Sedated, lacking energy and was unable to even walk 10 steps without feeling depleted, she felt she lost the person inside her. The medication did not cure her as much as just subdue the ‘voices’. She could still hear them, but was just not able to react to them.

It was by chance that Reshma began painting and found that it provided her with a very constructive channel for her energies and a creative channel of expression. Her parents and psychiatrist were able to see its effect on her and encouraged her to form her own understanding of her condition. Little by little, she began to take charge of her illness. She painted and read extensively about the historical, medical, social and spiritual aspects of schizophrenia and ‘madness’. Slowly she began toquestion the process of her ‘treatment.’ She asked, if it is okay for a child to have imaginary friends and play with them, why is it is not okay for me to? She began to question if aspects of her persona - her anger, tatoos, boyish behaviour and coloured hair - were symptoms of schizophrenia. She reflected and maintained a diary to identify symptoms of her illness and her identity outside of her illness.

She battled society, doctors, psychiatry, mainstream notions about schizophrenia and even her own parents along the way. She sought to move and engage in society. She took up several odd jobs, including at the book and hobby store and found her strengths as a person.

Simultaneously she also began volunteering with the Schizophrenia Awareness Association (SAA), Pune and helped facilitate group discussions. She began sharing her perspectives and found strength in the process. She also discovered that identifying with a person who is working and functioning with an extreme form of schizophrenia gave others a lot of hope. Next, she conducted a workshop for the Malaysian Mental Health Association to help user survivors break down their symptoms. Slowly she expanded her influence to attend conferences in different parts of the world and voice the user-survivors perspective in a consultation in Baroda to formulate the guidelines for persons with mental illness.

It was in 2008 that Reshma decided to give up medicines completely and manage her own well-being. She began creating a support group of her own-people from all walks of life, who just let her be and accepted her for who she was. She realized that acceptance from people outside the ‘sector’- people who allowed her to talk, debate, jump, climb trees and joke, played a critical role in helping her discover herself. Their ability to look at who she was, beyond the label, helped build confidence to stand on her feet. At the same time, meeting other people living functional and accomplished lives with mental illness, gave her the hope to aspire for more. Engaging with them and learning from her own experience, Reshma realized the need to stand up for herself and her community. She undertook the training policies organized by National Alliance for access to Justice for Persons with Mental Illness, and engaged in debated on legal capacity with lawyers.