Mental Illness and… Disability Advocacy

Malvika Iyer is a motivational speaker and disability rights activist, who’s spoken at places like the World Economic Forum, the United Nations Commission on Women and TedX, and led awareness workshops on disability and mental health at places including Infosys and SEWA. She has a doctorate in social work from the Madras School of Social Work, where her thesis was an attitude study of inclusion of and discrimination against differently-abled people among young people and society at large.

She is also my cousin. We’ve had amazing times together. I talked to her recently about the mental illness that she briefly wrestled with, and her work as an advocate.

I asked her these five questions:

What has been your experience with mental illness?

I have a unique story. I was thirteen years old when I survived a bomb blast. I lost both my hands in the accident, but that was not the only extent to my injury. The worst part was what happened to both my legs: nerve paralysis and multiple fractures. It was a gory mess. For two years, I was bedridden, and I had rods drilled inside my legs. I was thirteen.

When the accident happened, I was not able to connect with a lot of people. I had never met someone with a disability before, and after.

I couldn’t understand how to accept a new body image, a new disability; how to live with this loss.

I wanted to be a part of society again. I compared myself with my peers and felt dejected, and had an inferiority complex. As a teenager, I struggled a lot to find my identity, who I was, how I would be seen.

The discriminatory attitude towards people with disabilities is heart-breaking and insensitive. Often, it hurts more than physical barriers. In my case, that was very true.

I had a lot of healthy support from my mother, extended family, friends. I was able to express myself, because I was given the chance to, at every step. None of my feelings were incorrect or invalid. With that kind of support, I was able to overcome a lot of my challenges. Through becoming an adult, and college, and every phase of life, I was able to handle life and everything that came with it.

In 2018, I was diagnosed with gastroesophageal reflux disease (GERD). It was a traumatic experience for me.

People say it’s nothing compared to the blast. But I always feel bad when people compare two incidents, people or experiences. Because no two experiences are the same. Every individual is different, feels differently, and has unique challenges. Just because I survived a bomb blast, I don’t have the strength to survive anything that comes up, just be okay and go on with life. It doesn’t work like that.

Malvika Iyer. “Flowers represent positivity for me.”

GERD hit me very differently because of the way my body reacted. I had heartburn and acidity that was so severe, I was not able to sleep. We all know sleep is so important, and it heals us. I cannot function if I have not rested and had seven hours of sleep every day.

One day went by, then the next. I tried over the counter medication and it didn’t work. I went to see my doctor, saying I need help. None of the suggestions or treatments helped me. It went on and on. I couldn’t understand what was happening to me and why I couldn’t sleep: for 13 days in a row.

Towards the second week, I started experiencing anxiety. I had body tremors. I was not myself. I was somebody else. Finally, I took a flight back home. I was admitted to a hospital. It is something I still cannot imagine — for someone who has not slept for 13 days, how did I take a flight? I saw my mother at the end of that plane ride, and put an end to the trauma I was going through. I remember the doctors giving me sleeping meds and did a lot of things to try to help me. My body couldn’t shut down.

It took two more weeks to be able to finally sleep normally. Then there were two months of mild anxiety and a mild dosage of anti-anxiety medication. That was the first time ever that I needed help. I did not hesitate to take that help, because I needed it. My psychiatrist was wonderful and intelligent and understood what I was going through and helped me cope with so many other challenges I was going through in that phase.

I feel so glad I got the help I needed. Now it’s been a year and a half, and I have never felt better. I have not needed to do anything else now, except for just controlling my diet.

How did it affect your life, and did you see it coming?

The experience really changed me. Even now, sometimes I feel haunted. July is coming, and it brings back all those memories from July in 2018: the food associated with that time, or when I feel a small symptom, I instantly remember the trauma and the difficulty. Every day, it makes more and more sense to me that we should take care of ourselves and our mental health.

What are some works of art that have resonated with, or inspired you in your journey with mental illness?

A lot of Instagram pages where artists draw beautiful watercolors or digital art, and they share facts or stories or awareness about mental health. I love bookmarking them and going back to them later. Every day I spend easily up to half an hour going through these posts. Art is a powerful medium. I am so glad that now we are living in this time where everyone is highlighting the importance of seeking help.

Going forward, how have you used your experience towards advocacy? What does being an advocate mean to you?

Throughout grade 11 and 12, and college life, I didn’t speak a lot about my accident, not being able to walk, and my physical and emotional challenges. I just kept quiet. I only opened up with close friends when they met me in person. I just wanted to be like everyone, wear artificial hands and cover them with full-sleeved tops, and pretend things were okay and I was normal just like my classmates.

I did that for 10 years. In 2012, during my M. Phil study in Chennai, I wrote a Facebook post because it was the 10th anniversary of my accident. I briefly shared my story — this is something that happened to me and I’m so proud of the way I’ve survived. I got a lot of responses from my classmates and people I’d worked with. They said they’d always wanted to ask me more and this gave them a good chance, and they felt inspired by me.

I decided I want to speak about it in a public forum and then in 2013, I was invited to speak at a TEDx event in Madras. I shared my story and talked about disability and inclusion for the first time in such a big, public space. I got a standing ovation. That was a defining moment for me in becoming a motivational speaker. After that day, many media channels covered me, and I got many invitations to speak. It was all very new to me. I was scared and didn’t know what all I should say or not say — but it was a positive experience.

For the first one year, I did many talks in and around Madras. Then I got to speak in bigger cities and eventually I got to speak outside of India — Norway, South Africa, Singapore. Finally, after all these youth fora and summits, I got to speak at the United Nations in 2017 (at the Youth Forum at the UN Women’s Commission on the Status of Women).

I still get goose bumps when I think about that time. It was a tremendous platform and opportunity, the people who came to hear my story from around the world, how many young people were there, and the sort of response I got, and then the conversations with the media after the talk.

That’s how I became an activist and advocate for disability rights. Social media has played a very big part. I would share everything on my social media pages — Facebook, Twitter and Instagram. I had amazing followers on all platforms who interacted with me, wrote to me and shared my story further. All of it together made me realize it’s something that I would want to do. I’m glad I continue to do it.

What came with it was also being able to advocate on mental health issues. I interned briefly with SCARF Chennai collecting information in a recovery study of patients with schizophrenia. I learnt about the research side of advocacy. During my coursework for my master’s in social work, I volunteered in many programs where we worked on creating awareness. That is when I learnt about the varied ways young people can be a part of creating awareness. During my journey of being a disability advocate, the most important and sometimes the only thing that helped me was spreading awareness. Many people have come up to me and told me they’ve never met a person with a disability, never knew how to react in front of them or how to behave with them, and then realized people with disabilities were just like them, and part of our society. Contact and awareness are two very simple things we all can do. I understood through my PhD research speaking to 1,000 young people how they perceive individuals with disabilities. It’s so important to understand the attitudes formed at such a young age. We need to be able to positively influence and give young adults the option of diverse ideas. That’s the only way they can learn about new things and we can put an end to stigma.

Are there any misconceptions or things you’d like to clear up, about mental illness?

Something that really disturbs me is when people assume that if you shrug it off, or if you’re brave enough, or if you just distract yourself, you will overcome your mental illness. You have not understood mental health if you make these statements.

Also, that people who have mental illnesses are lazy, or don’t try enough, or give up too easily.

The worst myth or stigma is being labelled as being ‘weak’ when you come out and share your problems, or you want to tell someone you need help. There is also a lot of stigma attached to medication that it can alter your personality, or if you take medication you will be dependent on it. That stops a lot of people form taking anxiety medication or antidepressants.

Something many of us need to understand is that mental health involves medical disorders like any physical ailment. That is something I see a lot of people talk about now. I have had a lot of physical injury and I needed help. Doctors saved my life. I could have died that day in 2002. I had such severe injuries to my body, my hands and legs. When I survived the bomb blast, I was lying in the hospital bed, that I was going to die but I did not. I had a very traumatic physical injury. Mental disorders are very similar and that’s what everyone needs to understand. Like any other disorder or illness, it needs professional help and treatment.

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