Suresh: Hi, Grishma. Thank you for making time for the interview.
Give me an introduction about yourself-
Grishma: That is not an easy question to answer: I cannot find the right words to describe myself.
I live in Mohali. I am 35 years old. I graduated in Biotechnology Honors, and I did my MBA in healthcare management.
But then God had some other plans.
My recovery process continues seven years after the accident. I have worked with ISB School of Business, Mohali the last ten years. I am working with the Department of Academics and Administrative Services.
I had a short stint with Fortis. I worked as an HR manager with one of the super specialty hospitals in Mohali. A mentor from Fortis approached me for a position in her team.
It was a God-sent opportunity. I wanted to return to academics and get a Doctorate in healthcare or public policy.
You ask me- Who is Grishma?
This will sound cliche, but I am still trying to figure out who Grishma is. I am old school- I speak the language of spirituality. This is who Grishma is as of now, as revealed to me by the universe.
Suresh: Talk to me about the most prominent moment of your life.
Grishma: I suppose we are talking about the accident. My difficult moment in life was the passing away of my grandfather a few years before the accident.
The accident took place on 15th January 2016. I had a premonition about it. I saw the accident 5-10 minutes before it happened in my dreams.
I was going to meet my maternal grandmother. I was going to Meerut with my parents. We were 30 kilometers away at Baghpat, Uttar Pradesh. I was sleeping in the back seat of our car. My dad was driving, and my mother was sitting next to him.
When I regained consciousness, l realized that we were in an accident. My dad was not in the driver’s seat. I was petrified. I asked Mom. She told me there was a collision with a bus. Dad was talking to the Police. It was a rural area; many people had gathered at the accident site. He is fine.
I felt no pain; there were no signs of injury. I did not realize that my spine was broken at the C5-C6 level, which is on the neck.
I put my head back, trying to relax. I was falling asleep. My mom asked me to step out of the car. That is when I realized I didn’t feel any sensation in my legs. My mom asked me to keep sitting; she thought I was in shock.
Many people on the bus were injured in the collision. There was only one ambulance to take the injured people to the primary Health Centre.
I had no visible injuries. The ambulance prioritized and took the other injured passengers to the Health Centre. I was the last one, It was only later that everyone realized that I was the worst hit. The ambulance personnel tried to pull me out of the car.
The people from the primary healthcare Center had no training in handling trauma victims. They should have put a collar around my neck. Had they done that, I would have been able to walk today.
They pulled me out. That is when I felt a sharp pain in my neck because my dislocated spine had compressed my spinal cord. I told them to support my head because it was hurting bad.
I was to the Primary Health Centre. The doctor working there could not identify my problem. My Maternal uncle and aunt had to come to the Health Centre; they are doctors. My uncle is a surgeon- he realized I had a spinal cord injury. They shifted me to their hospital. From there, I was taken to AIIMS, Delhi. I was operated on within the 28th hour of my injury. You should have surgery within 36 hours of your injury.
I was in the ICU ventilator for 3 weeks. I survived a lung collapse. The battle for recovery was on. I was going to be in the hospital for a long time.
I have a distinct memory of an incident in the hospital. A nurse in the neuro-ICU department came to me. She tells me casually that I will never walk again. That is when I understood the full extent of my injuries.
It was lonely in the ICU. I cried a lot. I wanted to be with my parents; both had injuries from the accident.
Your perspective towards life undergoes a sea change after the trauma I had to go through.
Short-term goals are your primary focus- my goal was to move out of the ICU and be with my parents.
Your long-term goals: Getting a doctorate, marriage etc. become irrelevant.
My injury taught me to live. It taught me to cherish every moment of my life. Do not spend your day thinking much about long-term plans-mine have taken a back seat. I have stopped worrying about them.
I was discharged and shifted to Fortis Mohali. My parents had to prepare for my stay at home. I need an electronic bed. Machines were to be installed.
I was paralyzed neck down there was going. There were some encouraging moments. One day a nurse told me that the little finger in my left hand showed movement. I was thrilled.
At that moment, I realized an irony: One nurse took away my hope, and another gave it back. I began to understand the different shades of people around me. It has helped me to deal with people and difficult situations.
I learnt to take everything in life with a pinch of salt. Anytime people tell me something serious, I take it easy. Sometimes, people mock me – I am indifferent to it.
Suresh: The accident left you paralyzed below the neck- what is the medical term for that?
Grishma: Spinal cord injury, C5-C6 level. One is paraplegia, another is tetraplegia/quadriplegia. Tetraplegia means you have an injury on the C3 bone and above. You are on a ventilator throughout your life. Quadriplegia means injuries below C5-C6 bones. You might or might not get back your body functions back. Paraplegia is below your chest level, you have your upper body functions intact, but your lower body is paralyzed.
Suresh: What happens to the mind after an accident?How did the accident affect you psychologically?
Grishma: Before the accident, I had a short fuse. In the first few months after the accident, my anger grew. I used to lash out at my parents at my caretakers. With time, I came to peace with myself, my condition, and my situation. I am now blessed with the gift of patience.
I am at peace. I think it has to do with my experiences in the rehab center. I was there for 18 months.
I saw a man walk for the first time 18 years after his accident.
He was expressionless. No emotions, no tears, no regrets- That’s life, he said to me.
My doctors cannot assess how my body has been generating certain functions. They have no clue. It defied the boundaries of existing medical studies.
I raised my head towards the sky and thanked God for the miracle.
Suresh: People bear the physical and psychological consequences of an accident that leaves them disabled for a lifetime.
Then there are people around you, like your parents. How were they affected? What was the effect on them once they realized that you were paralyzed?
Grisham: The psychological trauma of my injury to my parents has been severe. They are very good at hiding things. I can sense that. They worry about me all the time. They are my primary caregivers.
We worry about each other and try our best not to show it. At this stage of their lives, they need me.
They are sleep deprived. At night, they check on me to ensure that I am ok.
There is a misplaced sense of guilt in my father as if he was responsible for the accident. He tries to figure out why his daughter is in this condition- it was a head-on collision. He thinks that he should have suffered my fate.
Yet, they are always happy and cheerful in my presence. They fulfil all my desires and work hard to attend to my needs.
But age is taking a toll on their health. I can see my father limp when he walks. I'm a single child; they worry about what would happen to me when they are no longer alive.
Suresh: Let’s talk about your social life after the accident. How did the accident change it? Was there any change in their attitude or behavior? In my opinion, Indian society finds it hard to accept disabilities. What has been your experience so far?
Grishma: Before the accident, I didn't have many friends. I have always been a loner. I love to spend time with a select few chosen friends sometimes. I prefer indoors if they were to go out and like. Before maximum, they used to ask me that.
Over the years, I have meticulously chosen my friends. They are friends for good reasons. They're my 3:00 AM. All my 3 friends are there for me whenever I need them. Nothing has changed between us.
My employers and colleagues at ISB are my extended family. They've been a blessing. In the long journey of my recovery, they've been there for any help or support.
I was on medical leave for a year. My seniors in HR came to visit me at home. My family of ISB have been my therapy. Every morning, I go for my physical therapy. My healing has been possible due to the love and support of the people at ISB.
My parents have been my best support system.
I feel blessed to have good people as a support system.
Suresh: What challenges do you face when you step out? Is there social inclusion in India for people with physical disabilities?
Grishma: The infrastructure for disabled persons is poor in India. Public places do not have ramps. When I visit a restaurant, I do not see a ramp. The hotel staff will offer to carry me in my wheelchair to the table.
That is not a respectful way to treat people like me.
You asked me about social inclusion. It is minimal. You feel it- when people stare at you- as if you are a freak. It is weird.
If you stare at a woman, it is deemed inappropriate. But staring at a disabled person is fine? Their look says it all -Why is she like this? Why are the fingers crooked. It made me uncomfortable, but then I got used to it.
I have observed that children are very considerate. They will come to me and ask me if I am ok. They tell me not to worry, I will be fine. But adults make you uncomfortable.
Social inclusion works both ways. When I was a part of CSR activities for disabled people, I felt it was our responsibility to include them. But many people with disabilities are not for social inclusion. They want to be in their own world.
The community of disabled refrain getting socially included because they feel that they're lesser beings.
I've written blogs. In one of my blogs, I wrote about a lack of empathy. People with disabilities do not need your pity. They need people to be aware of the practical problems faced by people with disabilities.
When you observe a person in a wheelchair struggling to enter a building, raise the matter and get a ramp built. Add inclusivity to your behavior. We will have a better life if you do so.
This problem is prevalent all over the world. The exceptions are the Scandinavian countries. They are well-equipped, have the infrastructure and are proactively inclusive.
People with some form of physical disability form 3% of the population. We are too small to be a vote bank for a government. People fail to understand that the problems faced by people like us are like problems faced by geriatrics. Society is not working on their inclusion and leaving them out during development work.
I am selective about the market I visit. My criteria? The market has an ATM because ATMs need a ramp as stated by government mandate.
Once. I had to visit an ophthalmologist. I couldn’t. The clinic did not have a ramp. Even people in healthcare are not supportive of us.
People like me let it go. They're not raising their voicing anymore.
Rehab centers organize events for fundraising or spreading awareness to help disabled people. Once people attend the events, click their pictures, and post them on social media, they forget about the patients. They have no clue about their sufferings. They are not bothered.
That is the level of hypocrisy that we are living in. Imagine what goes through our minds when we see all this.
Suresh: Let's discuss the opportunities for people with disabilities to enter the job market. You spoke of the exceptional support from ISB when you decided to work after the accident. What is your view on job opportunities for people with disabilities?
Grishma: It is limited in India. I am one of the lucky ones. ISB has been a blessing. Had I been working in any other organization, I would have been unemployed, irrespective of my academic credentials and work experience.
A person with disabilities needs money. Cost of rehab, special equipment, a full-time attendant. It is expensive for a person like me to live. I need an attendant to take me to therapy, my office, and the washroom.
I need an electronic wheelchair, a modified car, and a full-time nurse at home. Medicines cost Rs.5000 per month medicines. People with disabilities do not get a job that pays Rs.5000. They let go of their prescribed medication. They cannot afford them. An enabled body can freely move to different locations for a job.
I know people who have been dumped by their families as they cannot bear the cost of caring for a disabled person. I remember a young girl asking me for a job so that she could continue with her treatment. Her father had dumped her at the rehab center.
Suresh: There seems to be a lack of trained professionals who can work as attendants. Family members of people with disabilities lack formal training to care for the patient. Your views.
Grishma: I remember a man at the rehab center with two burnt toes. His family had placed a heater near his feet and forgot about it. The toes had to be amputated.
Another patient told me how his family leave him on the verandah when it rains.
The NGOs are struggling to provide quality care. There is a misappropriation of government-allotted funds. There is no audit as to where the money is used.
I spoke to a Professor who is an adviser to the NEETI AAYOG. He told me that the government does not have data on the number of people having neural disorders. There is no data on people with spinal cord injuries. If I want to do my PhD on disability, I do not have enough data to work with.
I would have to start from scratch. The only organization that I know of doing exceptional work is R2D2. I know the water is dirty. But I am determined to make a difference. I am ready to get my hands dirty if it helps people like me.
There are benefits given to people with disabilities by the government. But not one person knows about it. There are no means of communicating these benefits to the people who need them.
Suresh: Preparing for this interview, I learnt a disturbing thing regarding the economic effects of disability. I was looking at health insurance or medical insurance - it covers your injury and treatment. But it does not cover rehab, machinery, equipment, and physiotherapy.
For all of this, money must be spent from your own pocket. There are no covers, there is no insurance, and there are no financial plans that can cover these prohibitive costs. Is that true?
Grishma: A part of my treatment was covered under the employee insurance plan at ISB. I am not sure what my parents would have faced if there had been no insurance. I'm not sure what my parents would have done. Yes, there are provisions. There are certain benefits. But then, there is no lifelong support.
I have grade four spasticity. My legs and arms will be like wooden planks if I don't get therapy for a day. I'm always strapped to my wheelchair or else I fall off. My legs move involuntarily all the time. I need an attendant all the time. My parents have spent a lot of money on my rehab and after-care. This is a lifelong expense. I am one of the fortunate ones.
People skip medicines because they cannot afford it. I can't even imagine their plight. I count my blessings. Thank you, God.
There are people at the rehab center who can stay there through beds sponsored by a corporate or individual. There is constant fear of being thrown out if the sponsor does not renew.
Then there is the nutritional aspect related to recovery. Patients need a proper diet plan to ensure the development of muscles in the body weakened by accident. Patients are not aware of how important nutrition is for them.
Many of the rehab centers and NGOs serve the food donated to them. No one checks if it’s the appropriate diet for the patient.
Many NGOs receive grants to keep a dietician. None exist. Where is the money being used?
Suresh: What should people do to improve facilities for the disabled group?
Grishma: Raise your voice. Open your mind. Be inclusive. You need not stare at people with disabilities. They don’t want your pity. Help them. Make them a part of your friend’s circle.
Be sensitive. When you go to a restaurant or office building, tell them they should build a ramp to be disabled-friendly. This will also help geriatrics move around public places like people with disabilities.
Suresh: Your plans?
Grishma: I want to do my doctorate in healthcare and research public policy that provides affordable healthcare to people with disabilities.
I want to create an online application for people with disabilities. The application will be a guide to help people find solutions to their daily problems.
Private institutions charge a bomb for nurses and attendants. They pay a pittance to them and pocket the money. I want to break the monopolistic shackles of such players. The application will help provide services at a reasonable cost ensuring the right people get the money.
Another issue I look to address through this app is the timely availability of attendants and nurses. The practical problem faced by many people with disabilities is that these attendants and nurses quit giving a day’s notice. This leaves the patient in a quandary and disrupts their life. Without an attendant or a nurse, the patients cannot go about their daily routines. The application will assist in such situations.
The application can be a platform for people with disabilities to apply for jobs. The jobs listed will not only be for the ones with fancy degrees. It will also be for the people at the lowest education level.
Suresh: Have you ever thought of being in a relationship and starting a family in the future?
Grishma: I have not given it much thought after the accident. I am not saying no to the idea. If it happens- great; if it doesn’t, no problem. Disabilities can destroy families; I have seen it happen many times.
Suresh: Has the accident changed your views on spirituality. People who face extraordinary circumstances make them question the existence of God.
Grishma: I am spiritual now.
Before the accident, I was an occasional visitor to the temple. Spirituality did not have a strong influence on my life.
In the beginning, I told you about my premonition about the accident. I had seen my father getting hurt. It was not a dream; I was awake when I envisioned the scenario.
I fell asleep after that. I woke up after the accident. My father broke his arm, but he was alive. Months later, when I asked my father about the accident, he told me it was a miracle that he was alive.
The bus that hit them was nearly on top of him when it toppled. I believe this was a trade-off between my soul and the divine power. I wanted my father to live; I offered myself in the bargain.
I am in a wheelchair. Maybe there is a Divine plan for all of this. Someday, I will be able to understand it. God blessed my dad and gave me a few more years with him. I am at peace.
It took me a long time to accept my disability. I had a belief that I would walk again. I have now come to terms with what has happened.
Spirituality has taught me acceptance.
Spirituality has given me the confidence to speak about my disability.
Before the accident, I was a swimmer, a squash player, and a kathak dancer. I miss my outdoor activities, but I am not bitter about it. I am thankful that I enjoyed all these activities for many years.
I'm full of gratitude. I don't have any regrets. I am a positive person. I've handled my anger issues.
Give me an introduction about yourself-
Grishma: That is not an easy question to answer: I cannot find the right words to describe myself.
I live in Mohali. I am 35 years old. I graduated in Biotechnology Honors, and I did my MBA in healthcare management.
But then God had some other plans.
My recovery process continues seven years after the accident. I have worked with ISB School of Business, Mohali the last ten years. I am working with the Department of Academics and Administrative Services.
I had a short stint with Fortis. I worked as an HR manager with one of the super specialty hospitals in Mohali. A mentor from Fortis approached me for a position in her team.
It was a God-sent opportunity. I wanted to return to academics and get a Doctorate in healthcare or public policy.
You ask me- Who is Grishma?
This will sound cliche, but I am still trying to figure out who Grishma is. I am old school- I speak the language of spirituality. This is who Grishma is as of now, as revealed to me by the universe.
Suresh: Talk to me about the most prominent moment of your life.
Grishma: I suppose we are talking about the accident. My difficult moment in life was the passing away of my grandfather a few years before the accident.
The accident took place on 15th January 2016. I had a premonition about it. I saw the accident 5-10 minutes before it happened in my dreams.
I was going to meet my maternal grandmother. I was going to Meerut with my parents. We were 30 kilometers away at Baghpat, Uttar Pradesh. I was sleeping in the back seat of our car. My dad was driving, and my mother was sitting next to him.
When I regained consciousness, l realized that we were in an accident. My dad was not in the driver’s seat. I was petrified. I asked Mom. She told me there was a collision with a bus. Dad was talking to the Police. It was a rural area; many people had gathered at the accident site. He is fine.
I felt no pain; there were no signs of injury. I did not realize that my spine was broken at the C5-C6 level, which is on the neck.
I put my head back, trying to relax. I was falling asleep. My mom asked me to step out of the car. That is when I realized I didn’t feel any sensation in my legs. My mom asked me to keep sitting; she thought I was in shock.
Many people on the bus were injured in the collision. There was only one ambulance to take the injured people to the primary Health Centre.
I had no visible injuries. The ambulance prioritized and took the other injured passengers to the Health Centre. I was the last one, It was only later that everyone realized that I was the worst hit. The ambulance personnel tried to pull me out of the car.
The people from the primary healthcare Center had no training in handling trauma victims. They should have put a collar around my neck. Had they done that, I would have been able to walk today.
They pulled me out. That is when I felt a sharp pain in my neck because my dislocated spine had compressed my spinal cord. I told them to support my head because it was hurting bad.
I was to the Primary Health Centre. The doctor working there could not identify my problem. My Maternal uncle and aunt had to come to the Health Centre; they are doctors. My uncle is a surgeon- he realized I had a spinal cord injury. They shifted me to their hospital. From there, I was taken to AIIMS, Delhi. I was operated on within the 28th hour of my injury. You should have surgery within 36 hours of your injury.
I was in the ICU ventilator for 3 weeks. I survived a lung collapse. The battle for recovery was on. I was going to be in the hospital for a long time.
I have a distinct memory of an incident in the hospital. A nurse in the neuro-ICU department came to me. She tells me casually that I will never walk again. That is when I understood the full extent of my injuries.
It was lonely in the ICU. I cried a lot. I wanted to be with my parents; both had injuries from the accident.
Your perspective towards life undergoes a sea change after the trauma I had to go through.
Short-term goals are your primary focus- my goal was to move out of the ICU and be with my parents.
Your long-term goals: Getting a doctorate, marriage etc. become irrelevant.
My injury taught me to live. It taught me to cherish every moment of my life. Do not spend your day thinking much about long-term plans-mine have taken a back seat. I have stopped worrying about them.
I was discharged and shifted to Fortis Mohali. My parents had to prepare for my stay at home. I need an electronic bed. Machines were to be installed.
I was paralyzed neck down there was going. There were some encouraging moments. One day a nurse told me that the little finger in my left hand showed movement. I was thrilled.
At that moment, I realized an irony: One nurse took away my hope, and another gave it back. I began to understand the different shades of people around me. It has helped me to deal with people and difficult situations.
I learnt to take everything in life with a pinch of salt. Anytime people tell me something serious, I take it easy. Sometimes, people mock me – I am indifferent to it.
Suresh: The accident left you paralyzed below the neck- what is the medical term for that?
Grishma: Spinal cord injury, C5-C6 level. One is paraplegia, another is tetraplegia/quadriplegia. Tetraplegia means you have an injury on the C3 bone and above. You are on a ventilator throughout your life. Quadriplegia means injuries below C5-C6 bones. You might or might not get back your body functions back. Paraplegia is below your chest level, you have your upper body functions intact, but your lower body is paralyzed.
Suresh: What happens to the mind after an accident?How did the accident affect you psychologically?
Grishma: Before the accident, I had a short fuse. In the first few months after the accident, my anger grew. I used to lash out at my parents at my caretakers. With time, I came to peace with myself, my condition, and my situation. I am now blessed with the gift of patience.
I am at peace. I think it has to do with my experiences in the rehab center. I was there for 18 months.
I saw a man walk for the first time 18 years after his accident.
He was expressionless. No emotions, no tears, no regrets- That’s life, he said to me.
My doctors cannot assess how my body has been generating certain functions. They have no clue. It defied the boundaries of existing medical studies.
I raised my head towards the sky and thanked God for the miracle.
Suresh: People bear the physical and psychological consequences of an accident that leaves them disabled for a lifetime.
Then there are people around you, like your parents. How were they affected? What was the effect on them once they realized that you were paralyzed?
Grisham: The psychological trauma of my injury to my parents has been severe. They are very good at hiding things. I can sense that. They worry about me all the time. They are my primary caregivers.
We worry about each other and try our best not to show it. At this stage of their lives, they need me.
They are sleep deprived. At night, they check on me to ensure that I am ok.
There is a misplaced sense of guilt in my father as if he was responsible for the accident. He tries to figure out why his daughter is in this condition- it was a head-on collision. He thinks that he should have suffered my fate.
Yet, they are always happy and cheerful in my presence. They fulfil all my desires and work hard to attend to my needs.
But age is taking a toll on their health. I can see my father limp when he walks. I'm a single child; they worry about what would happen to me when they are no longer alive.
Suresh: Let’s talk about your social life after the accident. How did the accident change it? Was there any change in their attitude or behavior? In my opinion, Indian society finds it hard to accept disabilities. What has been your experience so far?
Grishma: Before the accident, I didn't have many friends. I have always been a loner. I love to spend time with a select few chosen friends sometimes. I prefer indoors if they were to go out and like. Before maximum, they used to ask me that.
Over the years, I have meticulously chosen my friends. They are friends for good reasons. They're my 3:00 AM. All my 3 friends are there for me whenever I need them. Nothing has changed between us.
My employers and colleagues at ISB are my extended family. They've been a blessing. In the long journey of my recovery, they've been there for any help or support.
I was on medical leave for a year. My seniors in HR came to visit me at home. My family of ISB have been my therapy. Every morning, I go for my physical therapy. My healing has been possible due to the love and support of the people at ISB.
My parents have been my best support system.
I feel blessed to have good people as a support system.
Suresh: What challenges do you face when you step out? Is there social inclusion in India for people with physical disabilities?
Grishma: The infrastructure for disabled persons is poor in India. Public places do not have ramps. When I visit a restaurant, I do not see a ramp. The hotel staff will offer to carry me in my wheelchair to the table.
That is not a respectful way to treat people like me.
You asked me about social inclusion. It is minimal. You feel it- when people stare at you- as if you are a freak. It is weird.
If you stare at a woman, it is deemed inappropriate. But staring at a disabled person is fine? Their look says it all -Why is she like this? Why are the fingers crooked. It made me uncomfortable, but then I got used to it.
I have observed that children are very considerate. They will come to me and ask me if I am ok. They tell me not to worry, I will be fine. But adults make you uncomfortable.
Social inclusion works both ways. When I was a part of CSR activities for disabled people, I felt it was our responsibility to include them. But many people with disabilities are not for social inclusion. They want to be in their own world.
The community of disabled refrain getting socially included because they feel that they're lesser beings.
I've written blogs. In one of my blogs, I wrote about a lack of empathy. People with disabilities do not need your pity. They need people to be aware of the practical problems faced by people with disabilities.
When you observe a person in a wheelchair struggling to enter a building, raise the matter and get a ramp built. Add inclusivity to your behavior. We will have a better life if you do so.
This problem is prevalent all over the world. The exceptions are the Scandinavian countries. They are well-equipped, have the infrastructure and are proactively inclusive.
People with some form of physical disability form 3% of the population. We are too small to be a vote bank for a government. People fail to understand that the problems faced by people like us are like problems faced by geriatrics. Society is not working on their inclusion and leaving them out during development work.
I am selective about the market I visit. My criteria? The market has an ATM because ATMs need a ramp as stated by government mandate.
Once. I had to visit an ophthalmologist. I couldn’t. The clinic did not have a ramp. Even people in healthcare are not supportive of us.
People like me let it go. They're not raising their voicing anymore.
Rehab centers organize events for fundraising or spreading awareness to help disabled people. Once people attend the events, click their pictures, and post them on social media, they forget about the patients. They have no clue about their sufferings. They are not bothered.
That is the level of hypocrisy that we are living in. Imagine what goes through our minds when we see all this.
Suresh: Let's discuss the opportunities for people with disabilities to enter the job market. You spoke of the exceptional support from ISB when you decided to work after the accident. What is your view on job opportunities for people with disabilities?
Grishma: It is limited in India. I am one of the lucky ones. ISB has been a blessing. Had I been working in any other organization, I would have been unemployed, irrespective of my academic credentials and work experience.
A person with disabilities needs money. Cost of rehab, special equipment, a full-time attendant. It is expensive for a person like me to live. I need an attendant to take me to therapy, my office, and the washroom.
I need an electronic wheelchair, a modified car, and a full-time nurse at home. Medicines cost Rs.5000 per month medicines. People with disabilities do not get a job that pays Rs.5000. They let go of their prescribed medication. They cannot afford them. An enabled body can freely move to different locations for a job.
I know people who have been dumped by their families as they cannot bear the cost of caring for a disabled person. I remember a young girl asking me for a job so that she could continue with her treatment. Her father had dumped her at the rehab center.
Suresh: There seems to be a lack of trained professionals who can work as attendants. Family members of people with disabilities lack formal training to care for the patient. Your views.
Grishma: I remember a man at the rehab center with two burnt toes. His family had placed a heater near his feet and forgot about it. The toes had to be amputated.
Another patient told me how his family leave him on the verandah when it rains.
The NGOs are struggling to provide quality care. There is a misappropriation of government-allotted funds. There is no audit as to where the money is used.
I spoke to a Professor who is an adviser to the NEETI AAYOG. He told me that the government does not have data on the number of people having neural disorders. There is no data on people with spinal cord injuries. If I want to do my PhD on disability, I do not have enough data to work with.
I would have to start from scratch. The only organization that I know of doing exceptional work is R2D2. I know the water is dirty. But I am determined to make a difference. I am ready to get my hands dirty if it helps people like me.
There are benefits given to people with disabilities by the government. But not one person knows about it. There are no means of communicating these benefits to the people who need them.
Suresh: Preparing for this interview, I learnt a disturbing thing regarding the economic effects of disability. I was looking at health insurance or medical insurance - it covers your injury and treatment. But it does not cover rehab, machinery, equipment, and physiotherapy.
For all of this, money must be spent from your own pocket. There are no covers, there is no insurance, and there are no financial plans that can cover these prohibitive costs. Is that true?
Grishma: A part of my treatment was covered under the employee insurance plan at ISB. I am not sure what my parents would have faced if there had been no insurance. I'm not sure what my parents would have done. Yes, there are provisions. There are certain benefits. But then, there is no lifelong support.
I have grade four spasticity. My legs and arms will be like wooden planks if I don't get therapy for a day. I'm always strapped to my wheelchair or else I fall off. My legs move involuntarily all the time. I need an attendant all the time. My parents have spent a lot of money on my rehab and after-care. This is a lifelong expense. I am one of the fortunate ones.
People skip medicines because they cannot afford it. I can't even imagine their plight. I count my blessings. Thank you, God.
There are people at the rehab center who can stay there through beds sponsored by a corporate or individual. There is constant fear of being thrown out if the sponsor does not renew.
Then there is the nutritional aspect related to recovery. Patients need a proper diet plan to ensure the development of muscles in the body weakened by accident. Patients are not aware of how important nutrition is for them.
Many of the rehab centers and NGOs serve the food donated to them. No one checks if it’s the appropriate diet for the patient.
Many NGOs receive grants to keep a dietician. None exist. Where is the money being used?
Suresh: What should people do to improve facilities for the disabled group?
Grishma: Raise your voice. Open your mind. Be inclusive. You need not stare at people with disabilities. They don’t want your pity. Help them. Make them a part of your friend’s circle.
Be sensitive. When you go to a restaurant or office building, tell them they should build a ramp to be disabled-friendly. This will also help geriatrics move around public places like people with disabilities.
Suresh: Your plans?
Grishma: I want to do my doctorate in healthcare and research public policy that provides affordable healthcare to people with disabilities.
I want to create an online application for people with disabilities. The application will be a guide to help people find solutions to their daily problems.
Private institutions charge a bomb for nurses and attendants. They pay a pittance to them and pocket the money. I want to break the monopolistic shackles of such players. The application will help provide services at a reasonable cost ensuring the right people get the money.
Another issue I look to address through this app is the timely availability of attendants and nurses. The practical problem faced by many people with disabilities is that these attendants and nurses quit giving a day’s notice. This leaves the patient in a quandary and disrupts their life. Without an attendant or a nurse, the patients cannot go about their daily routines. The application will assist in such situations.
The application can be a platform for people with disabilities to apply for jobs. The jobs listed will not only be for the ones with fancy degrees. It will also be for the people at the lowest education level.
Suresh: Have you ever thought of being in a relationship and starting a family in the future?
Grishma: I have not given it much thought after the accident. I am not saying no to the idea. If it happens- great; if it doesn’t, no problem. Disabilities can destroy families; I have seen it happen many times.
Suresh: Has the accident changed your views on spirituality. People who face extraordinary circumstances make them question the existence of God.
Grishma: I am spiritual now.
Before the accident, I was an occasional visitor to the temple. Spirituality did not have a strong influence on my life.
In the beginning, I told you about my premonition about the accident. I had seen my father getting hurt. It was not a dream; I was awake when I envisioned the scenario.
I fell asleep after that. I woke up after the accident. My father broke his arm, but he was alive. Months later, when I asked my father about the accident, he told me it was a miracle that he was alive.
The bus that hit them was nearly on top of him when it toppled. I believe this was a trade-off between my soul and the divine power. I wanted my father to live; I offered myself in the bargain.
I am in a wheelchair. Maybe there is a Divine plan for all of this. Someday, I will be able to understand it. God blessed my dad and gave me a few more years with him. I am at peace.
It took me a long time to accept my disability. I had a belief that I would walk again. I have now come to terms with what has happened.
Spirituality has taught me acceptance.
Spirituality has given me the confidence to speak about my disability.
Before the accident, I was a swimmer, a squash player, and a kathak dancer. I miss my outdoor activities, but I am not bitter about it. I am thankful that I enjoyed all these activities for many years.
I'm full of gratitude. I don't have any regrets. I am a positive person. I've handled my anger issues.
Thank you, Grishma, for sharing your thoughts with us. You are an inspiration to people facing challenges in life. Your attitude, courage and positivity are an inspiration to many.
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She is an inspiration to us all and a beautiful soul. Thanks for this insightful interview Mr. Nair, its indeed thought provoking that we as a society need to be inclusive and understanding towards people with disabilities. Let us all put in our efforts to make our surroundings more friendly and accessible.
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