At Chronic Pain India, it has been our constant endeavour to not only bring pain warriors together, but to also share their voices to motivate, inspire and most importantly to help us understand the struggles of battling with an invisible illness daily.
Today, we have Mr. Muralidharan with us, who is the secretary of National Platform for the Rights of the Disabled. Through this interview, we will get a glimpse of his life and also understand the importance of our right to a life of dignity.
- What is your tryst with chronic pain/disability?
Ans: I have had problems with my gut since childhood. Indigestion, pain, bloating and diarrhoea in varying degrees were experienced. Back home in Kerala rice was staple. But at the age of 18 when I migrated to Gujarat and started consuming more of wheat, symptoms escalated and soon it manifested on the skin. Lesions began to appear in clusters and spread from top to bottom, mainly on the trunk. I did visit several physicians and a few dermatologists for consultation but treatment was always symptomatic. The root cause was never addressed, while the diagnosis also varied from eczema to scabies and what not. I remember being put on steroids for a long period of time leading to weight gain and accumulation of fat around the waist.
After 17 long years of suffering finally I met the head of the department of dermatology at the All India Institute of Medical Sciences. After a skin biopsy, I was diagnosed with dermatitis herpetiformis and was advised to stay off wheat. For the first time a I was asked if I had problems with my stomach.
- How did your chronic pain experience alter your life and worldview?
Ans: Getting a correct diagnosis done was only half the battle won. The other half of finding what all food would contain traces of gluten, which continues to be a challenge even now. It took me pretty long to understand the difference between safe and unsafe food. That even things like potato chips or asafoetida (also known as ‘hing’ in Hindi is a spice also known for its medicinal properties) contain gluten was an eye-opener. Lack of awareness even among the medical fraternity, let alone those in the food business is true even today. Dining outside, non-availability of safe food during travel all are issues. When in doubt, leave it out, is the mantra.
The inability to undertake or perform something that would otherwise be considered a “norm”. This could be due to a host of factors, including but not restricted to loss/absence of a body part or an impairment. In my case I had an impaired gut due to gluten sensitivity.
- How would you personally define disability?
Ans: The inability to undertake or perform something that would otherwise be considered a “norm”. This could be due to a host of factors, including but not restricted to loss/absence of a body part or an impairment. In my case I had an impaired gut due to gluten sensitivity. I have an impairment and access to safe food has always been a concern. This barrier hinders my full and effective participation in society on an equal basis with others. Though there is an increasing awareness, but generally I continue to be discriminated with my requirements not being taken into consideration.
- What inspired you to take up disability activism?
Ans: Inequalities and layers of discrimination have been bothering me since childhood. This is what egged me to be associated with various movements of the downtrodden. Later in life I was to discover the sufferings inflicted upon the disabled due to institutionalized discrimination, marginalization and stigmatization. Associating it all with my condition came much later.
- What are your views about the Rights of Persons with Disability Act, 2016?
Ans: The RPD Act was enacted as part of the country’s obligation as a signatory to the UNCRPD. Like the convention, it has very strong provisions, which if implemented properly can bring about a positive change in the lives of disabled persons. Unlike the now repealed Persons with Disabilities Act, the nomenclature of the Act itself indicates that it has been drafted in a Rights based framework. Apart from provisions on education, employment, social security etc. the Act has penal provisions for violators. But let us not forget that all this came about after a big movement and struggle.
- Tell us something about National Platform for the Rights of the Disabled (NPRD) and its affiliates and your association with these initiatives.
Ans: Around eight people (including me) from organizations working among the disabled from Karnataka, Kerala, Jharkhand and West Bengal met in Delhi in October 2009. Bringing as many as possible under one umbrella, bringing in a cross-disability concept and give it a correct direction & perspective and building a movement around it was a big challenge. From humble beginnings in 2010 when we held our first convention, today as we are in our 10th year we have made an impact on the disability movement in the country. Both in terms of discourse as well as the methods of taking things forward.
Currently we have affiliates in 14 states in the country with a combined membership of nearly two hundred thousand and claim to be the largest cross disability organization in the country. Our affiliates working at the grassroots level take up issues confronting the disabled on a day to day basis. It can be on issues of disability certificates, pensions, health care issues, bus passes and discrimination in general, which is rampant.
But given the myriad problems and issues, our work is just a drop in the ocean. The vast mass of the disabled continues to remain out of the organised movement and blissfully unaware of even the existing programs and schemes let alone fight for their rights.
- What healthcare reforms do you suggest are a must for the welfare of invisible illness survivors in India?
Ans: What we need first is a Right to Healthcare Act. For a sound health system, we need huge public investments in the health sector, as opposed to the current trend of the increasing role of the private sector. Public expenditure on health to has to be raised to at 5 per cent of the GDP in the long term. The public health system has to guarantee free and easy access to a range of comprehensive health care services. Uninterrupted supply of all medicines, free of cost as also controlling price of essential drugs by adopting a cost-based pricing formula has to be ensured.
For a sound health system, we need huge public investments in the health sector, as opposed to the current trend of the increasing role of the private sector.
- What are the challenges faced by NGOs and trusts working in this area in India?
Ans: As the disabled are not a homogenous group, organizing them under a single umbrella constitutes one of the biggest challenges.
Disability continues to be viewed from a charity/welfare prism. This also holds true for many NGOs and organisations working amongst them. Orienting towards a rights-based approach and awareness generation are two big challenges. As an overwhelming majority of NGOs are dependent on government largesse their voices are also muted. The political climate in the country as of today also throws many new challenges.
- What can be done to raise awareness and sensitivity towards people with health challenges?
Ans: Sustained campaigns are required for this. Social media is the new tool that is being utilized by many in this direction. People at various levels importantly policy makers have to be targeted for this.