For the last couple of years, life for D. Shanmugam from Tamil Nadu and his wife has entirely been centred around their only daughter. Things were different once, some would term it as better. They were a normal, happy family, with grand aspirations for their daughter. “After passing the 11th grade, she suddenly started getting reclusive.
There were distinct signs of depression. At one point, she even stopped talking or eating properly. Things worsened over time. She complained of someone in her mind asking her too many questions. She would pester us for answers to those endless vague questions,” shares Shanmugam, who has now made peace with his daughter’s struggle with mental health. “We try our best to give her the best care. We make sure she gets her medication every day on time. I have also introduced her to Manavalakalai Yoga which is helping her to calm down,” he reveals.
No one has ever become poor by giving
– Anne Frank
But, amid the tumultuous journey over the past few years, Shanmugam has one grievance. “Nobody helped us when we needed it the most. I filed applications after applications, imploring government authorities to provide some support for my daughter. They gave me false assurances. Nobody came,” he still laments. His own harrowing experience with the government at the time of utmost need has prompted Shanmugam to be one of the first ones to sign the Bridge The Care Gap petition – an election-centric campaign which urges each and every political party to include mental health care in their respective election manifestos.
Why Bridge The Care Gap campaign stands out
Launched by Mumbai-based Mariwala Health Initiative, Bridge The Care Gap campaign has already garnered over 10,000 signatories which include survivors, caregivers, psychiatrists, non-profit organisations and illustrious personalities who are unabashed advocates of mental health care. Among the political parties, Indian National Congress and CPI(M) have given firm assurances to prioritise the implementation of the Mental Health Care Act at the outset.
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Statistics reveal how critical the mental health scenario in India actually is at present. The 2016 National Mental Health Survey estimated that 15% of the Indian population is affected by some mental health issue or other, needing clinical intervention. The figure might not look concerning until we realise that it translates to a whopping 130 million people across India. WHO estimates reveal that one in every four people in the world is bound to experience some mental health issue in their lifetime. Yet, the Indian government allocates less than 1% of its yearly budget on mental health care. Though in 2017, the promising Mental Health Care Act was chalked out, its on-ground implementation is yet to be seen.
“Our policymakers are still reactive to mental health issues, rather than take proactive action. The Government tends to see mental health only as a health issue, but if you speak to the public you will realise that they see it more as an inter-sectoral issue. For instance, people realise the need to reform education and examination systems to prevent/reduce teenage suicides,” observes Dr Soumitra Pathare, a renowned psychiatrist associated with many campaigns surrounding mental health, including Bridge The Care Gap.
Putting mental health on election manifestos
In conversation with Efforts For Good, Harsh Mariwala, founder of Mariwala Health Initiative (MHI), informs, “Our premise is simple: mental health is as important as physical health. This means that the government should appropriate budget for mental health services (beyond the current 0.6% that is being spent) and ensure quality service delivery on the ground. This translates into more trained mental health professionals, better mental health care facilities, affordable services and easier availability of necessary medication.”
He emphasises the importance of political involvement in the mental health sector. “None of this will happen without political will. Hence, an advocacy campaign like #BridgeTheCareGap was required — especially at a time when political parties are formulating their agenda and prioritising development issues for the elections. We want mental health on their manifestos and within the political purview,” Mr Mariwala asserts.
Some parties were proactive, others not so much
“To achieve the required objectives, we have approached all major political parties and did not leave out anyone, since our campaign is apolitical at its core,” shares Dr Pathare. Challenges were there, he admits. While in some cases, it was a cakewalk to interact with the top of the party hierarchy and patiently explain the petition to them, in other instances, it was almost impossible to get through.
“As of now, two parties, Indian National Congress and the CPI (M), have included mental health in their agenda and both have promised to implement the Act and the policy. There’s not much more detail in the manifestos at this stage, but we can flesh out the details with them when the opportunity arises,” he informs.
Once the 2019 LokSabha Elections are done and dusted, the campaigners also aim to carry forward their petition into the upcoming legislative elections in different states over the next few years.
Michelle’s story upholds the importance of Bridge The Care Gap
Four days before her 18th birthday, Michelle Silvera lost her father. Devastated, she started blaming herself for his sudden demise. “I thought since this has happened right before my birthday, it must be due to something I did wrong. I must have been a bad daughter,” Michelle opens up. Slowly, and helplessly, she found herself trapped in a vortex of negative thoughts. Doctors identified her condition as Schizophrenia and clinical depression.
“At the hospital, I underwent a very rigorous treatment. I have never imagined that I would have to endure such turmoil in my life,” reveals Michelle, who is eternally grateful to Manav Foundation for helping her overcome the worst phase of her life. Through a series of counselling sessions and creative therapies, the Mumbai-based rehabilitation centre helped Michelle to emerge triumphant at the end of her prolonged battle.
Manav Foundation is one of the collaborative associates in the #BridgeTheCareGap campaign, along with the Center for Mental Health Law & Policy, Anjali Mental Health Rights Organization, Anubhuti Trust, Schizophrenia Awareness Association. Some other stakeholders in the consortium include The Live Love Laugh Foundation, White Swan Foundation, Banyan, Society for Nutrition, Iswar Sankalpa, Bipolar India, Patients Engage – almost all prominent national organisations actively working in the mental health sector.
“As part of this campaign, we reached out to multiple organisations who do not exclusively work on mental health – but on child rights, women’s rights, law and policy, LGBTQ concerns, human rights and livelihood – the issues often intrinsically related to mental health. Approximately 50 organisations have endorsed this petition and supported it by publicising materials or sharing details with the communities they work in,” shares Ara Johannes, Communications Manager at Mariwala Health Initiative.
Efforts For Good take
“For mental health issues, I cannot say that medication is better than therapy or vice versa. But, the main need is for support. By support, I mean compassion, care and empathy,” believes Ratnaboli Ray, the founder of Anjali Mental Health Rights Organization, and herself a survivor of depression.
Persistent social stigma and traditional taboos surrounding mental health only make it harder for sufferers to survive, many of whom seek solace in ending their lives. Society indeed needs to alter the age-old outlook towards mental health, but that cannot be ensured overnight. To usher in a social change, it takes time and continuous efforts from all levels, particularly the ruling administration. Unless and until mental health features in the priority list of the government, the promising Mental Health Care Act 2017 would cease to be of value, putting many more lives in jeopardy. This is where lies the significance of Bridge The Care Gap campaign, which is the standalone initiative on mental health at the policymaking level. It provides the light of hope to thousands of silent sufferers whose voice gets lost amidst the hype and hullabaloo of mainstream political doctrines.
“I invite all of you to come to join us in this nationwide campaign to prioritise mental health,” Mr Mariwala appeals to all Indians. Sign the petition today and spread the word: http://www.bridgethecaregap.com/
A person suffering from Tuberculosis (TB) not only battles the ‘Mycobacterium tuberculosis’ bacteria inside his lungs but also from the stigma attached to the disease. It weakens the patients in many different ways in their fight against the dreaded disease.
My fight with TB was also filled with stigma. I joined IIT Kharagpur for my PhD in January 2015. Two months later, in March 2015, I was diagnosed with TB. I had to take sick leave from March 2015 that eventually lasted till June 2016. Initially, I did not respond well to medication. Further tests revealed that I had multidrug-resistant TB (MDR TB). This meant that the type of TB I had was resistant to two or more of the antitubercular medication I was taking.
About a year after the intensive phase of my treatment, I felt better and applied for readmission to IIT in July 2016. A prerequisite for rejoining was that my faculty members had to verify my application. With the formalities completed, I resumed my education, but I felt that something was amiss.
My guide indicated that he did not want his work to suffer on account of my illness. I also heard from a senior colleague that my guide had said that I would spread the disease like an ‘infested animal’. I was disheartened at being subjected to this indignity by my supposed mentor.
However, my primary concern was defeating TB, so I didn’t dwell on it. Today, as I reflect on it, I realise the reasons behind the stigma were ignorance as well as fear.
Even among the educated, there are misconceptions about TB. People think all forms of TB are contagious. Others believe the patient is infectious for the entire length of the treatment. Some even believe that TB spreads through touch. This breeds the fear of contracting the illness.
As we know, people stigmatise and discriminate when they fear. I felt the impact of the stigma on two levels – in my professional life and my personal life.
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Professionally, the reluctance of my supervisor to mentor me and his discouragement affected me. I could not decide whether I should wait for the IIT authorities to tell me to leave or drop out. That decision was made for me by luck when I found out that my CSIR grant application was never processed.
This meant that I would have to pay for my education. Given the expenditure on my treatment, this was unaffordable for me. This was the final nail in the coffin. I was forced to drop out and could not go back to completing my PhD.
What I faced was not technically illegal. I was discouraged from doing my PhD, but it was still a form of stigma. The external stigma I faced led to depression and isolation.
Eventually, I realised I had to fight. The treatment for TB is difficult, requiring strict compliance and the management of side effects, and these demands resolve. I began motivating myself. I began following a proper diet and completing my treatment to ensure I could recover. I also turned to books as they transported me to other worlds and helped with my isolation. I also focused on reviving my old relationships.
Gradually, things improved. I could not proceed on my desired career path, but I am an educator now. I constantly realise that I have a role to play in shaping young minds.
Workplace stigma has tangible consequences. It affects an individual’s career, financial opportunities and their right to work with dignity. So what can we do to address this stigma?
First, we need to sensitise people by educating them about TB, and the impact stigma has on patients.
Another measure is group counselling involving the patient, the employer and the immediate supervisor. Informal versions of these sessions happen in the workplace in the context of illnesses like cancer. Why should it be any different for TB?
The goal of this session would be to ensure that the patient is in a supportive environment.
Finally, at a systemic level, there needs to be a workplace policy on stigma mitigation and a mechanism where the patients can anonymously register their concerns about stigma at the workplace.
A person’s career or job is often their calling and a provider of financial security. Workplace stigma creates a hostile work environment, affecting a person’s ability to do their job and their financial security. Financial insecurity and stigma make it harder for the patient to fight TB both in terms of means and motivation. Therefore, addressing stigma in the workplace is critical to patient well-being and recovery but also to their right to work with dignity.