From Spinal Tumour Patient to Wonder Woman

Submitted by PatientsEngage on 9 February 2016

Spinal Tumour patient Deepa Malik first ever paraplegic Indian biker, swimmer, car rallyist, entrepreneur on a wheelchair

Three spinal tumour surgeries could not stop Deepa Malik from being the first ever paraplegic Indian biker, swimmer, car rallyist, entrepreneur who doubles up as a very successful motivational speaker as well. Read this amazing woman's journey:

“The common perception might be that she is like a man in a man’s world. But I think I am a perfect woman who has learnt beautifully the task of multitasking. I am a wonderful wife, a wonderful mother, a home maker, I keep a beautiful house, I cook and entertain, I am a successful athlete and I love being all of these. I am a woman in totality and I do believe I have understood what it is to be a woman in the real sense. I have not shied away from my duties as I speak of my rights”, says a very articulate Deepa Malik, who is an embodiment of positive spirit and confidence even though she is a wheelchair-bound paraplegic, for whom nothing works chest-down. Deepa has a harrowing medical history of endless operations and three spinal tumour surgeries in the past 14 years. But that has not been able to keep her down. And she is the first ever paraplegic Indian biker, swimmer, car rallyist, entrepreneur who doubles up as a very successful motivational speaker as well. She can give most people a run for their money as far as her achievements go, and because she has led from the front against all odds, it is cool when she exclaims, “Being normal is not all that cool”. A tete-a-tete with the ex-beauty contestant with a ringing voice and an infectious laughter:

PatientsEngage: So what is being cool Deepa?

Deepa: Doing something out of the box. I have always been a crazy person. I guess, the easiest part of my success is I continue to be the person I was. The only difference is the wheelchair on which I am completely dependent to take me anywhere. So the things I have always wanted to do are now being viewed as achievements (laughs). How cool is that!

My love for sports has always been strong and I have always been an outdoor person. I am a chilled person and I am still running a home which runs as smoothly as it should, I still cook everyday, nothing has changed really. The only difference is that now I am tweaking it from a wheel chair. My body is difficult. But my soul is so chirpy and lively. I don’t let my body take over my soul. Apart from my supportive family, I am also blessed with a great infrastructure of friends. I try to make living a fun thing. Why try to create a mountain out of a molehill when you have picked up the mantra of making it a life to be cherished. So that for me is being cool.

PE: What, according to you, are some of the biggest challenges people with disabilities face in trying to lead a meaningful life (with regards to job, family, society)?

Deepa: The biggest challenge for disabled people lies within themselves, in their immediate family. Everyone around any disabled person tends to make a huge issue out of it. Being disabled is by itself a psychological and emotional burden. But the negativity of the people around us actually makes it so. The most important thing for a disabled person is to accept the situation and then make an effort to learn more about it. People refuse to learn that the new life calls for a lot of alterations and changes. So some amount of learning is involved. Food, clothing, social norms – everything goes through a sea-change. What actually causes a problem for the disabled is developing a resistance to change. Change is only possible when you learn of the alternative thing.

The lack of infrastructure in our country is also another big challenge for the disabled. There are times when I have to keep on enquiring about whether there is a disabled car parking space or other such facilities if I have to attend a function. There are times when I don’t have a driver.

But these things don’t stop me. I call a cab, ask a friend to accompany me, but I don’t shirk. I always go. There is also a lack of sensitisation in people which poses to be a challenge for the disabled. At least in rural areas, disability is considered a curse. I have had the opportunity to interact with many of them in the sporting world and they feel or they have been made to feel that they are cursed. That is a big burden to carry around and a stigma that is hugely challenging.

PE: What would your advice be to them? How do you take control of your life when you have lost control over your body?

Deepa: My first and foremost advice to them is stop living in the past and move on. The second thing is to start comparing yourself with the first day that you were reduced to this state, and feel how much better you are now. The third and very important advice to them would be to learn about the new body and take your physiotherapy exercises seriously.

One must also remember that it is the body which is the problem, not the soul. I believe that the body is nothing but custodians of our souls.

Therefore, it is the moral duty of our soul to keep us happy. And that is how I start my counselling sessions. And it is easier for the others to have faith in my words because I lead with an example. I practice what I preach. Action always speaks louder than words which is why I have always found it easier to connect.

PE: What can we as a society or individuals do to empower/help such people regain control over their lives? Mention 3 points that you think are most important.

Deepa: We can do a lot. If we individually take just one sq km each, about 10 houses in that radius, and make an effort to reach out to people and help create a little world for them which is an accessible part, even that would be special. We, as a society, need to encourage them to do some work.

Or even try and smoothen out their areas of movement, like make a shop have a ramp so that a wheelchair can go up, or some such things which can make everyday living easier for the disabled. In other words, create opportunities for them to be a part of society. Create work opportunities for them, help them lead dignified lives. Sympathy is the last thing they want, so don’t waste your energy on that.

PE: Most people facing your challenges would have become disheartened, depressed, even hopeless. What gave you the mental strength to face your challenges and reinvent yourself? What was going on in your mind at that time?

Deepa: I think I was craving for a different identity. Just because I was paralysed, I lost my identity of a wife, mother, home maker etc. People naturally assumed that I will waste in a wheelchair and die in a room in my own urine and stool. I was not ready to accept this. Maybe it was my upbringing. So I realised I would have to make a difference for myself and for that I would need to make an effort. For me, within my own family we worked very hard emotionally towards it. Our family had become a subject of discussion at social gatherings and we were being pitied upon. I had to give a shock treatment. I had to convey the message that I am no different now from what I was, that I am still a person with passion, desires, warmth, laughter and everything that is associated with a normal human being. I guess I had this basic craving to change my identity from a patient to a human being. And for that, I owe a lot to people around me. With time, I also learnt to identify the friends I would like to associate with, which is why I also have a very positive set of friends around me. I only like to associate with these people.

PE: If a family member or friend were faced with a disability, what are some of things you don't say to them? What do you say or do to help?

Deepa: The first thing I tell them, don’t discuss the past. What has happened has happened. What you should not do is give the person the feeling of being a burden and how everyone’s life is getting disturbed because of him. Do not make him feel guilty of something which is beyond his control. The best thing is to be happy company for him. One must realise that as it is, it is emotionally and physically draining. Be there for them without making them feel helpless.

PE: You have many achievements to your name. What are you most proud of? What gives you the most happiness?

Deepa: I love all my achievements (laughs). They are like my children, and I don’t know which one to choose. Each one is special. I have a biking World Record, I have participated in the highest altitude motor rally, a first of its kind for a paraplegic, I have a Limca record and so many others. My younger daughter has initiated an NGO called ‘Wheeling Happiness’. My elder daughter is also physically challenged. But she has emerged as a role model for many. So I actually have achievers all around me.

Having said that, a couple of awards I hold very close to my heart. I was once given a Mace (Gada), which is a very male thing. It is usually an award given to the best kushti fighter for high powered physical gains. But this was given to me by a village khap in Haryana, a place which is known to treat women in a subservient way. But their gift of a gada to me was for, ‘Zindagi ke akhaade mein bal dekhane ke liye’ (To emerge triumphant in life). I was specially happy as I was able to change their thought process. I have been blessed with a series of awards like the Arjuna Award, the Presidents Role Model Award, the Human Rights Council Award among so many others. I have also fought for government jobs for physically challenged sportspersons as well as for equal cash awards.

PatientsEngage: Please tell us about ‘Ability beyond Disability’ mission.

Deepa: This drive was basically to create awareness about the potential of a person with disability. We, the disabled, are usually dismissed. The general perception is, because she is paralysed she cannot do this.

People are largely unaware of the amount of potential we have . Plus, it is also important for the physically challenged to be aware of their own inner abilities. Which is why the disabled are not even considered for proper jobs, when their input potential is as good as the others, if not more in some cases. I wanted to dispel the existing doubts on our physical abilities. ‘Ability beyond Disability’ is a mission against stereotypical thought processes and fixed notions. I wanted to break the myth concerning disabled people and disabilities.

PatientsEngage: Please complete these 2 sentences:

What I would like the world to understand about me..... ‘That my soul is not paralysed’.

If I could change one thing about the world, it would be....‘To provide enough opportunities and accessibility for people with any kind of disability and for them to lead a dignified life.’

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List of Awards:

International medals- 12

National/State level Achievements

President Role Model Award 2014

WCRC Leaders Asia Excellence Award 2014

Limca people of the year award 2014

iCONGO Karamveer Puruskar 2014

Amazing Indian Awards Times Now-2013

Cavinkare National Abiity Mastery Award -2013

Karamaveer Chakra award 2013

Nominee for Loreal Femina Awards 2013 in “Women We Love Category” along with MC Mary Kom, Sridevi and VidyaBalan.