By Shruti Pushkarna
Recently, while researching different disabilities and their representation in the media, I stumbled upon a blog dedicated to fiction for adults, young adults and children which contain characters living with Multiple Sclerosis (MS). The creator, Jennie Minor who works in Brooklyn, decided to write her master’s thesis on Understanding Disability through Literature while in graduate school. Her mother was diagnosed with MS when Jennie was 13 years old.
Around 2.8 million people are estimated to live with Multiple Sclerosis worldwide. While the prevalence of MS in India was valued at nearly 1/1,00,000 in the 1980s, reports suggest that annual diagnoses have almost doubled, as per more recent data collected from hospitals across the country.
Yet the average Indian knows so little about this condition.
May 30 is observed as World Multiple Sclerosis Day. The theme for 2023 is ‘Connections’. People with MS often feel lonely and socially isolated, so this year, MS advocates around the world urged people to build personal and community connections for better services, support systems and quality care.
I spoke to a young MS advocate in India who has been living with this condition since 2014. Anjali Vyas hails from Bhandara, a town near Nagpur. She is a Chemical Engineer by qualification and an English language trainer by profession. Currently pursuing a fellowship on disability at National Centre for Promotion of Employment for Disabled People (NCPEDP), Anjali writes and propagates stories about people with MS and other invisible disabilities on social media.
Q: For the benefit of our readers, can you articulate what is Multiple Sclerosis? And how does it affect the life of someone living with this condition?
A: MS, known as Multiple Sclerosis (a tongue twister), is an autoimmune, neurological disorder. This means that one’s own immune system attacks the body, to be particular, the protective layer on the nerve fibres. This protective layer is called Myelin sheath which acts as an insulation of the nerve fibres and helps in smooth transmission of the messages from the body to the brain and vice versa. Just like we have insulated wires in our homes that support the flow of electricity by protecting the copper wires inside it! Now when this message to and from the body as well as the brain is not delivered on time, it disables a person to respond or perform a particular task. And this entire process is invisible, which also leads to extreme fatigue, brain fog, urinary incontinence, pain, tingling, numbness and weakness. It’s very difficult to make people understand the challenges due to the invisible symptoms while struggling to manage the condition. This further adds to the stigma around MS and hampers the quality of life of a person with MS and their caregivers/ family.
Q: You have been involved in raising awareness around MS. What differences have you noticed in the awareness levels of people here in India versus abroad, in other countries?
A: MS usually manifests in young adults, typically between the ages 20-30 and its prevalence is twice in women than in men. As per the India MS map (www.indiamsmap.org), 70% of the registered members at Multiple Sclerosis Society of India (MSSI) fall in the age group, 19-45; which is a working class population. Despite being recognised as a disability in the Rights of Persons with Disabilities (RPWD) Act 2016, the awareness on MS is very low. MS is prevalent in the western countries and hence is comparatively better known and understood by people, including health professionals and policy makers. In India, the awareness among general physicians and government officials is still low.
When I had my first relapse in the form of temporary vision loss, my ophthalmologist had no idea about MS. Even to get a disability certificate, people with MS find it extremely challenging as the members in the assessment panel and the government officials don’t know much about this condition and its invisible symptoms. There is only one organisation, MS Society of India, that’s been working for the welfare of Persons with Multiple Sclerosis since 1985 and the fact that it exists was also not well-known until the RPWD Act came into force.
Q: In your experience, are people living with MS comfortable in coming out and talking about their disability? Are they accepting of their own condition? Do they feel they can talk about it with others without the fear of being judged?
A: Had this question been asked several years ago, I would definitely have said that people with MS aren’t comfortable talking and accepting it. Employed adults with MS are often uncomfortable disclosing it to their employers or colleagues due to the fear of job loss or fear of getting treated differently/ unfairly. But in the past 2-3 years, in my experience, I have seen things improve. While there still exists stigma and fear, people are getting vocal about their disability and being more acceptable of MS. I personally feel that this shift in mindset is owing to the impact of social media and role models, especially in the field of cinema.
Yes, there’s always a fear of being misjudged or misunderstood and that will only disappear gradually when there will be more conversations around MS or for that matter, any invisible disability. I too, was in denial for almost a year after my diagnosis and wasn’t ready to share my condition until I decided to educate myself on MS, in the right manner. Ever since then, my journey as a self-advocate on MS, began.
Q: Famous American actor Selma Blair who announced her MS diagnosis on Instagram in 2018, shared in an interview to The Guardian, that her doctors urged not to go public as no one would understand and she wouldn’t get work. She did make an appearance at the Oscars in 2019 with a bejewelled cane and she was applauded as a warrior, a hero. How do you respond to that?
A: Before the news on Selma Blair getting diagnosed with MS came out, most people with MS didn’t even know of her as an established actor. Still today, some don’t. But as soon as the news aired, I remember some of my MS friends called me and said, they suddenly felt empowered. In fact, very recently, Selma Blair was also on the Vogue cover, which added to the confidence and feeling of belongingness amongst people with MS. Afterall, it was the first, international representation of the MS community.
On the other hand, I personally also feel that labelling people with disability as warriors or heroes or glorifying them because of the disability, is not as fair. Terms like these, act as catalysts in shaping the stigma on disability around us. To ensure inclusion, we need to normalise the notion that every person with disability is as good an achiever as anyone without disability.
Q: The lead actress in the Netflix series, ‘Dead to Me’, Christina Applegate received her diagnosis during filming the show in 2021. It was tough for her, and Netflix paused production and even considered doing away with it altogether. But she wanted to finish it. When Applegate was doing publicity for the latest season, her condition was also public. And there were a lot of social media responses to it. Do you think how we react to such news/ information today, has changed over the years?
A: As I mentioned earlier, cinema and social media have been instrumental in demystifying the myths and alleviating stigma around disability over the past few years. Earlier, the portrayal of disabled characters had always been that of subject of pity. They were always seen as helpless and dependent. I always wondered about the impact of the female disabled characters on the impressionable minds. As the times changed, technology advanced and the youth became more involved and sensitive towards important issues. A shift in such narratives on disability was observed. In my recent experiences, I have seen that most of the younger generation has become proactive and pursues the issues around disability, empathetically yet logically.
Q: While there are various Bollywood movies which have looked at protagonists with Cerebral Palsy, Autism, Asperger’s Syndrome, Amnesia and so on, the only character I recall with MS, was of Meenu in Mani Ratnam’s Guru. Vidya Balan plays Meenu, who builds a strong friendship with the lead, Gurukant Desai, portrayed by Abhishek Bachhan. What do you think of the portrayal of MS in our films and television?
A: Firstly, there has not been enough representation of disabilities in the mainstream cinema, let alone conditions like MS. Also, it’s unfortunate that the characters who play the role of a disabled are themselves non-disabled. No offence, but talking about portrayal of MS in Guru does not hold true for most of the Persons with MS (at least in the present times) as many of us do not exhibit any visible symptoms or disability. Hence, I also feel that persons with MS must be provided the platform for right depiction of the many forms of this disability. I must add that very recently, a documentary on a woman with MS and her life, called ‘I am a Limited Edition’ was premiered in Chennai. It will be soon released on OTT platforms too.
Q: What about the mainstream news media? Do you think journalists understand issues facing persons with MS, and report these adequately?
A: Nobody can deny the fact that mainstream media has not been as heedful towards the issues of disability as they have been towards criminal stories. It’s only on the occasion of the paralympics that one can see media even talking about disability. Frankly, I am not sure if the media knows enough about ‘disabilities’. The gap can be observed clearly when the just a couple of news channels have only 10 minutes of news for the Deaf with Sign Language Interpretation, that too in the odd hours of afternoon. Using language like, ‘Despite being disabled…’ further segregates us from the matters, that matter the most.
Q: How can the media help with normalizing MS or any disability for that matter?
A: It all starts with using the correct terms/ language around ‘disability’. Calling us differently-abled or specially-abled doesn’t help in normalising disability conversations, as we are neither different nor special. It’s also important that media should make their news accessible for the disabled and make them a part of the dialogues that happen on any national issue that can impact the disabled population equally. For instance, the pre-budget discussions that air on news channels days before the budget session, should have at least one speaker or representation from the disability community. It’s as basic as that. To Leave No One Behind, inclusion in all forms is essential.
Given that India is an emerging economy with a rising population of persons with MS in the country, it is high time that prime issues of people with MS and other disabilities be adequately reported by the media with appropriate disability terminologies.
So why are we publishing this column on an A&M site? Well, we strongly feel that the media can dramatically transform the world of persons with disabilities. And this series can help bring forth issues that the media must champion to create a truly inclusive and accessible India. To write this column, we invited Shruti Pushkarna, a former journalist who is now a disability inclusion advocate based in New Delhi. Her views here are personal. To access the archives of her 70-odd columns, please visit: https://www.mxmindia.com/category/ columns/shruti-pushkarna/
If you have a view on the issues raised or would like to align with MxMIndia on this cause, write to us at editor [at] mxmindia.com.