A host of people in India have stayed true to this credo of living and made a difference. Not only to their own lives, but also to that of others. They inspire people to look beyond the physical limitations of an individual.
One such person is Madan Lal, 45, from Haryana, a tailor by profession and vocation, who was born without arms.
Haryana: Fatehabad man Madan Lal, born without arms, is a professional tailor, fulfills everyday needs using his feet. pic.twitter.com/nIEh5Y8RAC
As a young student with disability, Madan Lal was denied entry to even an inclusive school, but that did not deter him. “My family couldn’t afford to educate me, and I thought that the government wouldn’t help me either. So I’ll have to do something to survive in this life,” he told Daily Mail.
At 23, young Madan decided to pursue tailoring to earn his livelihood. After a long search for a trainer, he eventually found a teacher willing to give him a chance. The only question asked was, “You don’t even have arms. How will you stitch?”
He travelled to Fatehabad and learnt the art in the short span of a year. Today this local hero owns a shop and stitches beautiful garments, all with the help of his talented toes.
“Whatever I have to do in my life, it’s just with my feet. All the stitching work I do with my feet. From cutting the cloth to measurement, I have to use my feet,” he told ANI.
Even after starting his small business, he came across a few people who were sceptical about his skills at first. “People used to make fun of me. They never believed that I would learn tailoring using my feet. They would say, “He stitches with his feet, he will ruin our clothes.” Then I slowly started to win their confidence,” he shared, according to the Daily Mail report.
While growing up, his disability did not bother him because his grandparents would take care of him and his daily chores.
Initially people used to hesitate. Later,they understood that I'm a real tailor. Also giving training to children in 5-7 villages: Madan Lal pic.twitter.com/cSrsRorHrB
Establishing his own shop gave him independence and a new lease of life. “That day I forgot all the sufferings. It was the best day of my life. I saw people coming to my shop to greet me. The whole village was happy, as if they were part of my family,” he said.
Today everyone visits Madan Lal’s shop showing him immense support and love. He is also training five to seven children from the village.
For Smriti Nagpal and Virat Suneja, opening a café and employing hearing impaired people wasn’t a decision that needed much thought. Virat had grown up with his cousins, Kapil and Mamta (Smriti’s siblings) who are hearing impaired.
Speaking about how the café came into being, Virat says, “It was a dinner table conversation that gave Smriti and me the impetus to start a café. We knew that other than being hearing impaired there is absolutely no difference in them. Also, growing up with them (cousins) did change the way I look at differently abled people.”
Smriti is fluent in sign language and has been working as a sign language interpreter with DD news for over a decade now.
The cousins chose the name Hearken, which means “to hear” in Old English—an apt title for a café that emphasises on listening to each other in the absence of words.
This couple on a date wanted to learn how to wish his wife on Valentines day. Photo Source: Facebook
The café has been in existence for about six months now and has gained popularity amongst their patrons. Virat says, “We want to ensure that we are inclusive in the true sense of the word. It isn’t just lip-service for us. We organise various events at the café and that ensures that we are on our toes and also helps us in constantly evolving.” For instance, a recent event saw a mime act performed by Manoj Kumar, one of the hearing impaired waiters at the café who is also a deaf mime artist and very passionate about theatre.
“In the beginning it was difficult to make the servers understand what the roles entailed,” says Virat.
“But with training and practice they are now well-versed with all that needs to be done to run the café. Having Smriti train them has been a boon.”
Smriti and Virat – founders of Hearken cafe
Having started the cafe, the duo is now working to ensure that sign language is given its due. Virat says, “While we all learn various languages in school, one very important language that I feel needs to be given its due is sign language.” The café conducts sign language classes every Tuesday between 5.00 pm and 6.00 pm.
“We encourage people to come in large numbers and learn. We need to break the stereotypes that cloud our minds.”
A report published by the World Health Organisation (WHO) states that 360 million people in the world suffer from hearing loss. This constitutes a substantial 5.3% of the world’s population. With these disquieting statistics, one would hope that more organisations and public spaces would practice inclusivity.
When asked how receptive the guests are to the concept, Virat says, “We have been meeting various kinds of people. While most of them are very encouraging, we have also met a few who are surprised and unable to grasp the concept. It is truly a mixed bag.”
He concludes, “I want people to know about the hearing impaired. I would like mainstream to engage with them more and if through the café we are able to achieve that in some small way, I would be happy. What keeps us going is this urge to make a difference.”
We live in a society where people with disabilities are looked down upon and treated like outcasts, especially people with intellectual disabilities. 2 % of our total population suffers from disabilities, out of which 0.2 % are intellectually disabled. This percentage converts to 27 lakh people, which is about 1 in every 500 people, a number which can no longer be ignored.
These people have varying levels of IQ, with most of them suffering from multiple disabilities like cerebral palsy, vision impairment, multiple sclerosis, etc. as a complication of their poor brain development. But the question to really ask is, “Are they different from ‘normal’ people?” It is important to give people who are “different” a voice and make them a part of our society, instead of looking down upon them, not giving them any opportunities, and marginalising them.
To make our society a more inclusive one, Jai Vakeel Foundation is working towards spreading awareness on intellectual disability. It also works with such persons to help their education and independence. To break the stereotypes related to disability, the story of Shubham, a student of the Jai Vakeel Foundation, reinforces the idea that people with intellectual disabilities can excel in any field, sometimes even more than people without such disabilities.
Coming from an impoverished background, Shubham lives in a shanty chawl in Lalbaug, living with his parents. Diagnosed with mild intellectual disability (IQ between 59-70), he joined Jai Vakeel at the age of 10, transferring from a Marathi medium municipal school because of his poor academic performance.
Years of hard work by his teachers and therapists paid off, and he started to thrive in school, becoming more focused and calm.
The teachers noticed his aptitude and interest towards sports, and motivated him to participate in sports competitions, winning several medals. The sports teacher identified him as perfect for floor hockey, a team sport also part of the Special Olympics. With dreams of one day representing India, Shubham started training. Over the years, he played at the District, State, and finally the National level! His dream came true with selection to the Indian floor hockey team participating in the 2017 Special World Winter games.
To prepare for this, he went to four gruelling camps, working on his strength, agility, and most importantly, his personality. He participated in the Special Olympics held at Austria in March 2017. The team won the gold medal in their event, making Shubham’s family, school, and the entire nation proud!
The cherry on the cake? Shubham now has a job with Sodexo, a French food services and facilities management company, with various perks. Shubham had very poor sitting retention, behaviour problems, and attention-seeking tendencies. Today, he has proved that his intellectual disability does not stop him from dreaming big, and achieving his dreams. With his job at Sodexo, he will be supporting his family.
To find out how you can help support more children like Shubham, visit the Jai Vakeel website.
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Young Uma Moy Moy Chopra’s stars changed almost as soon as she came into this world. Born as the 13th child to the wife of a potato farmer in Uttarakhand, Moy Moy’s birth itself happened by sheer chance. The farmer’s wife had made up her mind to abort the child (she had conceived despite sterilisation), but the doctor she went to said she had a family who was willing to adopt her baby in a private adoption.
The 13th child of a mother who’d given birth 12 times previously, born on the side of a road, 12 weeks premature, one kilo at birth – Jo Chopra, the adoptive mother and an American by birth, knew the dice was loaded against the baby girl she was planning to adopt, but she decided to go ahead nonetheless. Jo had two natural children of her own, but laws and adoption agencies at the time in India were unwilling to allow a couple with a boy and a girl to adopt a third child. “The family was perceived as complete. So we couldn’t adopt a third child through the agencies,” says Jo.
So when the baby came her way, she didn’t blink an eyelid.
Her husband was not in favour of the adoption initially, as he felt it wasn’t the right time for them to have a third child. But Jo was determined.
Uma Moy Moy Chopra with her family
For the first few years of her life with the Chopras, Moy Moy seemed fine. A trifle slower than other kids, she could nonetheless speak (both in English and Hindi), eat, was toilet-trained, and had a pretty “sophisticated” sense of humour for a 4-year-old. She was a “delightful little girl full of tricks”. Call it fate or the little girl’s good fortune, but her adoptive family embraced her with intense love and longing.
Of course, at the time, Jo couldn’t foresee what the future held for her and her adopted baby. “I thought then that she would be able to lead a normal life – go to school, get a job in a flower shop, or something simple like that. I knew she wasn’t going to be an academic, but she was so able, funny, and engaging that I felt things would be fine”.
It was when Moy Moy turned 6 years old that she slowly started to regress. The whole family witnessed her regression in total shock and pain.
Her son Anand (now 33) and daughter Cathleen (now 30) were by then fiercely attached to their Moy Moy – “little sister” in Cantonese.
“It was like watching an elderly person with Alzheimer’s. She started to get seizures, forget things, she wasn’t getting her sentences right, she became ungainly, started to trip and fall.” She was no longer reliably toilet-trained, eating became a challenge, and soon the little girl lost the words that previously tumbled so happily out of her mouth. “She was speaking in full sentences, then some words, then some sounds, and now…” says Jo.
Now 27, Moy-Moy is sitting next to us at the couple’s house in Dehradun’s VasantVihar Enclave in a wheelchair, her head slightly tilted. She is silent. Her eyes are unblinking. My impression is that she is trying to say something, but her body fails her.
After she turned 6, the child went through a steep decline over 10 years or so. At 16, a tube had to be inserted to allow her to eat. The family went through a harrowing few years. Moy Moy’s disabilities did not allow them to do any of the normal things that families do together.
“Travelling was hard. With Moy Moy, everything had to always be accessible, and nothing is accessible in India when it comes to people with disabilities, as you know,” says Jo.
If Jo Chopra had not been a picture of tranquility, I would probably have burst into tears. Never have I felt so humbled at someone’s ability to take what many would feel is a tragedy beyond belief with such dignified composure.
“Why didn’t you produce a third child instead?” I ask. The enormity of what Jo is having to deal with is yet to sink in, and makes me question why she didn’t simply follow her own mother’s footsteps : Jo is one of seven children. But I learn that her mother too adopted one of those seven (a girl), whose name is Moy Moy. Jo’s Moy Moy is in fact named after her aunt. Jo already had two “homemade” children – she was quite clear she wanted to adopt.
Jo in fact wonders how her life would have progressed if Moy Moy had been like a regular child.
It would have been easier for the family, and of course for Moy Moy, but a number of other children and parents may in fact have lost out a lot.
Moy Moy’s misfortune has in fact become the good fortune of thousands of handicapped children. Thanks to Moy Moy, Jo started KarunaVihar Special School in 1995 – a school for children with disabilities. “We had planned to have just the school and the creativity center – which is a fun place for kids to learn and play – but the need was just so enormous.” One thing led to another, and now Jo has a “mini-empire” she runs. She is grateful to Moy-Moy for giving her a purpose and something to live for. The girl has helped Jo find her “calling” in life.
Besides the special school, there is Latika Roy Foundation, the child development centre, and the centre for vocational training. There are seven centres all over the city. There are waiting lists at every center. There’s a centre at the Doon hospital, where they do diagnostics and assessments. With a staff of 115 (all salaried), they do training, awareness, outreach, and advocacy. Her staff, she says, is a “remarkable” group of people, and they are the backbone of the foundation today – a lot she feels privileged to work with.
The foundation works with 300 children with special needs on a daily basis. The school looks after the children who are more able academically, who can learn to read and write and have less severe disabilities. “Many of our kids can manage independently with a bit of help, can hold down a job, and maybe even get married” – something Moy Moy can never hope to do. Children with more severe disabilities are managed at the child development centre.
“We start with newborns, and the earlier we start, the more we can achieve with the children,” she explains.
At the Doon hospital – where they do OPD and infant monitoring – the Foundation’s doctors and trained specialists work with and treat close to 2,000 children every year. Regular follow-ups are done for these children who live in the region, but mostly not in the city.
Jo’s own life has changed completely. She travels all over the country to speak and raise awareness and money, and gives TED talks while keeping home and hearth together. Raising money is something she has been doing herself. She writes proposals, meets corporates, and speaks at any forum where she may be heard.
Yet at no stage during our hour-and-half long chat do I find her overwhelmed by the enormity of the task before her. “The organization has added so much work for me, yet it is them who make it possible. Many of my staff – who have got jobs because of Moy Moy – are devoted to her. If I am travelling, 10 people will be willing to come and look after her in my absence.” But as far as possible, the couple doesn’t travel at the same time. One of them is always there to look after Moy Moy.
“She has a circle of love and protection around her, thanks to our people,” says Jo, her eyes shining with happiness at this.
How is this whole enterprise financed, I ask. It does require quite an effort, but when intentions seem genuine, Jo feels, there are enough people with a heart. Some years ago, Thermax’s Anu Aga saw a TED talk given by Jo, made the effort of coming to Dehradun to see the whole project, and left Jo with a cheque of ₹1 crore!
Although the chuck of the money comes in through grants from trusts (The Ratan Tata trust is one of the major ones), they have been getting money now from the government, corporates, and private donations. Fees are charged on a sliding scale, so no child is refused if the family can’t afford it, but if a family can afford it, fees are charged based on income documents submitted. The highest fee charged by the foundation is ₹1,400 a month.
Disability itself has changed dramatically in India, according to Jo. When Moy Moy’s problems began, they couldn’t find therapists, specialists, or anyone. In fact, there was no clear diagnosis for a long time. Despite taking her to Hinduja Hospital in Mumbai, no one could clearly identify what was wrong with the child.
Finally the couple took Moy Moy to the US for the final verdict – cerebral palsy.
Now in India, Jo says, things have improved. It may be a far cry from what is needed, but fully-trained specialists can now be found in India. The specialists can in turn train more people. Initially, even to manage the centre and special school, Jo had to get specialists from the UK to help train their therapists.
I am like a stuck record, and still reeling under the shock of how much her life has had to change, and how much of herself is dedicated to Moy Moy, a child she adopted. “You only adopted a child. You didn’t bargain for all this,” I say, a bit embarrassed at how insensitive I sound even to myself.
She laughs. There are no guarantees in life, she says. You can give birth to a child, and you don’t know for certain everything will be hunky-dory. She says this was perhaps easier in a way since she did have some inkling that things could go wrong with Moy Moy.
Perhaps she under-anticipated the extent of it, but it wasn’t as if she wasn’t aware that there is a possibility.
Jo also feels that she would never have been able to do all this in America. A college drop-out, she says she would never get to meet and work with or experience all that she has thanks to Moy Moy. In some ways, she says it was all meant to be. “I chose Dehradun, Moy Moy’s mother was persuaded not to abort her, we found Moy…Can it be that destiny did not play a role in all of this?” she asks. Even how she met her husband – Ravi Chopra, the reason she finds herself in India to start with – is destiny, and a separate story I shall refrain from telling in the interest of brevity.
I ask whether the birth mother or father have been in touch since the adoption, and do they know how things turned out for their daughter. Jo – who is fluent in Hindi – says that Moy Moy’s birth father had actually never wanted to give her up, and he felt they could have taken care of her, in addition to their 12 children. He came across Jo and Moy Moy some years ago when Moy Moy had stopped speaking but was still walking with support. He could see the regression, but just nodded his head and said in Hindi, “You must owe her something.” Uma, their daughter of the mountains.
About the author:Anjuli Bhargava is a Consulting Editor for Business Standard.
Adapted from an article originally published on Business Standard. For more information, and to help children like Moy Moy, contribute to the Latika Roy Foundation.
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More people are going to be able to benefit from state support offered to people with disabilities as seven new categories are going to be added to the Disability Act 2014, bringing the total to 14.
As it stands, the Act recognises the the following seven impairments as a disability and counts those living with them as eligible to receive state benefits: blindness, low-vision, locomotive disability, hearing impairment, mental impairment, mental illness and leprosy.
According to India Today, the new groups will include the following: cerebral palsy, dwarfism, muscular dystrophy, specific learning disabilities, deafness, autism, spectrum disorder, multiple sclerosis, Parkinson’s disease, haemophilia, thalassemia, sickle cell disease, multiple disabilities (condition of any two disabilities or more) and acid attack survivors.
Shaheen Malik of Delhi Commission for Women spoke of the move to India Today, “Now, this will ensure if the disabled do not get a private job, he or she can get government entitlements. Also, after an acid attack, our studies get discontinued due to financial losses, so now we can opt for higher studies too.”
Additionally, new guidelines are being sought to help medical professionals to calculate percentage of disability and to make sure that those in most need can access the help they need. Presently, people with 40% and above disability are getting full benefits.
People with disabilities continue to be one of the most neglected and marginalised groups in Indian society. Their hardships extend well beyond their physical and mental conditions as they fight to become recognised as equal in many areas of society from employment to education.
As per an estimate of World Health Organization, almost one fifth of the disabled persons of the world lives in India. Although there exists several rights under various Indian laws, as well as UN conventions that are followed in India, because disability is difficult to define and quantify and as there is much social stigma attached to it, many individuals who need help and support end up falling through the net and receive none at all. Furthermore, many such persons are simply unaware of their rights and because of this do not avail them.
In December last year, the government raised the reservation in government jobs for people with benchmark disabilities from 3% to 4%, and in higher education institutes from 3% to 5% and whilst this was a celebrated announcement for those entitled, many of India’s ‘other’ disabled persons had little to rejoice about.
Now, however, more people will be able to gain benefit from government moves such as this as the Act opens up its support for many more of India’s marginalised groups.
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As you drop your 6-year-old at school, you notice another boy. He flaps his hands oddly and covers one ear. Your little boy turns around to say ‘bye’ to you. But this boy doesn’t turn around, despite his mother calling out his name many times. She notices several pairs of eyes, including yours, staring at her. She looks down and leaves quietly.
You see the same child at a school function. While all other children stand confidently to sing their song, he’s given a place in the corner. An assistant teacher stands close to him, watching him with hawkish eyes. Your eyes move to the mother sitting at the edge of her seat. She seems to be anxious. Your friend whispers, “Her son has autism.”
Then one day your child talks about the autistic boy. “Mom, nobody likes to play with him. He only plays with cars and puzzles. He doesn’t listen to teacher, and makes funny sounds. Sometimes he lies down on the floor in class. Teacher gets very angry with him. But he can do any puzzle, and he plays ‘Temple Run’ so well. He has the highest score in class.”
Dear parent, do you feel like you’re at a crossroads? What will you tell your child about this boy with autism? Consider understanding these two aspects:
A. Autism is not a disease
It is not contagious. It’s a differently wired brain. A person with autism learns differently. He understands what you say, even if he doesn’t speak.
B. What if he was your child?
How would you like him to be treated? Would you like his classmates to treat him kindly, or would you like him to feel like a misfit? Every child needs to be loved and accepted.
Dear parent, take this opportunity to teach your child about special needs. Your teachings right now can help him become a more compassionate, well-rounded human being. Teach your child to:
1. Accept differences
Each of our five fingers is different. So is every child, autistic or not. Children are taught in a conventional way. But each child learns differently.
One of my students is hyperlexic. He was reading words without understanding them from the age of 2. He is a visual learner. If he is taught using pictures, he understands a concept immediately. Teach your child to respect differences. You will help him develop empathy at a young age.
2. Be helpful
A child with autism has problems in certain areas. He might drift. He might find it difficult to return to class after recess. A helpful classmate can keep an eye out for him. Your child can be that helpful classmate.
At the age of 7, when Mohit went to school in Seoul Academy International School in South Korea, a group of girls would look out for him and play with him at recess time. I’ll never forget those beautiful girls with tears streaming down their cheeks on Mohit’s last day at school. Kindness goes a long way. Encourage your child to be a ‘kind classmate’.
3. Play with them
The autistic child in the opening story was good with puzzles. He loved his cars and iPad. Encourage your child to join him in those activities. Rest assured, your child will learn something new. Also, your child can invite the special child to play with him. He can make another child feel better and not lonely.
Remember, your child looks to you as his model. If you are large-hearted and understanding, your child will imbibe your qualities.
4. Talk to them
Speak to children with autism like they understand everything, because they do. The internet is filled with testimonies by autistic adults stating they understood everything during childhood, even though they didn’t speak.
Speaking has nothing to do with understanding. Some children with autism speak a lot, some show need-based communication, while others don’t use words to communicate. This does not mean they don’t understand.
If children make fun or tease the child with autism, know that this sensitive child understands. It will probably scar him for life. Teach your child to talk to the differently-abled. Yes, it starts at this young age.
5. Don’t be mean
The child with autism may appear to be odd and different. Teach your child to not laugh or make fun of him. Every class has bullies. Children with vulnerabilities make soft and easy targets. Teach your child to recognize the bullies. Don’t gang up against the vulnerable child.
One of my students would have nightmares about his classmates. It was painful for him and his family. The foundations for building friendships and maintaining relationships develop at a tender age. Give your child a head start.
You Can Make A Difference
20 years ago, I was at a mall in the US. Mohit was jet-lagged and overwhelmed. He had a meltdown. Anil and I handled him the best we could.
I had the regular “concerns”: What will people think? Are they staring at us? Are they judging our parenting?
Nothing like that happened. Not one person stopped to look. They walked by as if it was normal. Nobody gave us advice. They went about business as usual.
On the other hand, I’ve witnessed several difficult situations in India with Mohit and my students. If a child has a meltdown on the street, at a restaurant, or at a mall, everybody stops to stare. A 100 people gather in five minutes. People offer advice without understanding the situation, which the parent doesn’t need at that time.
Do you know why those adults in the US didn’t stop by to look at us or give us advice? Because they were exposed to children with different needs in their classrooms as kids. Their parents and teachers probably explained the exact same points as the ones mentioned above to them. They were taught to accept and respect differences.
We can make this happen in India too. If each mother stands up and explains to her child. You can be that mother. Start with yourself. If each mother stands up, each child will stand up for the differently abled.
Let me assure you, you will gain more than you give. Your child, a future decision maker and leader of this country, will be an accepting, well-rounded individual with his head on his shoulders.The onus of bringing up your child well lies on you.
This article was originally published on the SAI Connections blog. For more information and guidance on working with children with autism, visit the SAI Connections website.
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Autism can sometimes be a difficult diagnosis to live with. However, it can also lead to some truly memorable and special experiences, and it is important to focus on the good things rather than the bad days. I’d like to tell you about what A.U.T.I.S.M. means to me, and hope that you will agree with me:
A is for Awe
I am awestruck at what my child is able to do, despite the limitations placed upon her.
U is for Universe and Understanding and Unique
My child inhabits a parallel universe that I must understand and help others understand. In the process, I evolve as a human.
I learn the great lesson, that differences in others must be appreciated, and that uniqueness can carry advantages as rewarding as similarity.
Fortified with that strong positive message from a parent, any child will very likely make astonishing progress.
T is for Tolerance
I must tolerate the insensitivity of others, and learn to take it not as a personal slight, but as an opportunity to educate.
Source: Action For Autism, National Centre For Autism
I is for Incredible
I stands for the incredible inner resources I never knew I had. The incredible ability of a friend, or family member, even if there be only one, to be supportive. The incredible joy in my child’s eyes when she achieves a breakthrough.
S is for Selective
I must be selective about the episodes I focus and dwell upon, whether they be the behaviour of my child, a setback with the school system, or differences with my life partner or a relative.
I must ball up like an armadillo and let those forces flow over me, to temporarily crush, but never to consume.
M is for Movement and Milestones
I must keep moving. Moving to find answers, moving to find ways around obstacles, moving to harness the energy of well-wishers, moving to enrich the life experiences of my child.
I can set a distant goal, but I must not look beyond the next milestone. I must never belittle any achievement, any change, any dawning awareness in my child, no matter how small. Rather, I must celebrate each milestone by throwing a wild party, even if just for two – my child and me.
(The author, Chitra Raman, is the mother of a young individual with autism. This current work was first published in the December 2002 issue of the Autism Network Journal.)
You can help Action For Autism reach out and provide services to people with Autism and their families by contributing online.
Shishir Kumar Choudhary from Betul district of Madhya Pradesh worked for Help Age India as he always wanted to help people. However, one accident brought him to an important realization: more than help, people with disabilities require resources suitable to their need. Today, Shishir’s NGO Naman Seva Samiti has provided such resources, helping 17,000 people with disability in 1,500 villages across four states become independent. Of the 17,000 people, 5,000 are in the farming sector.
On April 4, 1999, Shishir Kumar Choudhary met with an accident that left him with 56% disability. He lost the ligaments of his right leg and had to undergo a bone replacement operation. Shishir was on bed rest for almost nine months after this fateful incident.
“It was then I realised how difficult it would be for disabled people. In those nine months I learnt to do everything on my own right from cooking to changing a cylinder even though I had to use a caliper. I had resources that helped but I would keep thinking about the disabled people who lived in villages and were uneducated,” says Shishir.
After this, Shishir had a strong desire to do something for the people with disability living in remote villages. Once he discussed the idea with a few friends, they joined him in his mission. And Naman Seva Samiti was formed in 1999.
Shishir Kumar Choudhary
What followed was no less than a miracle. After years of hard work and persistence by the team, they are effectively working on the following sectors in over 1,500 villages of 9 districts of Maharashtra, Madhya Pradesh, Uttarakhand and Rajasthan.
They have changed the lives of over 17,000 disabled people by working on issues like
Health and sanitation– The NGO has built more than 2,000 toilets and is bringing about behavioral changes in the villagers to avoid diseases causing disability.
Education – Mainstreaming children with disabilities into formal education by building capacity of teachers, parents and caregivers, developing training modules, teaching and learning material, and concurrent advocacy with formal education systems.
Social Protection – Strengthening Disabled People’s Organisation (DPO) by training 1,000 DPO leaders. Bharatiya Viklang Jan Forum formed by Naman Seva Samiti, which is leading a DPO movement under the banner of Bhartiya Jan Viklang Forum, had brought organizations from across India together in Madhya Pradesh last year. This dialogue initiated a joint advocacy effort for issues that affect persons with disabilities across the nation.
Livelihood – By giving skill development training to villagers without land and giving training and resources for farmers with land.
The livelihood programme is divided into two categories –
Non farming – This includes 15 initiatives like mobile repairing, embroidery, small shops, vegetable trading, etc.
Farming– The differently-abled land owners are first informed about organic farming methods and technology used. They are then trained to do vegetable production, milk production, horticulture and bee keeping.
Sheep and wool development programme for income generation among 2,000 families has also been done.
Today, there are more than 600 farmers who have developed a Farmer Federation, which is registered as Tapti Organics Producer Company Ltd. It further works with 5,000 farmers.
Having keen interest in farming, Gulab Singh was not satisfied with his agriculture practices in his ancestral 2 acres of land. He was investing up to Rs. 8,000 per year for maize crop to get maximum 12 quintal production paying back about Rs.15,000 at market rate. He and his wife, a person with hearing impairment, had to rely on wages from labor work and little income from tailoring to make ends meet for the family of five.On the top of that, a loan amount of nearly Rs. 10,000 would remain on him every year.
Gulab Singh was selected as ‘Naman-Prerak’ (Person with Disability to motivate organic farming-based green livelihood in village) by the villagers. He got training and exposure to organic farming practices and applied the training in his own farm. This reduced cultivation cost of Rs.2,000 and an increased production of 18 quintals to get returns of Rs. 24,000 at market rate.
In a recent pest attack on the crop, many farmers used the pest-controller prepared by him and got good results. This increased the farmers’ faith in organic farming. Gulab Singh motivated these farmers to form Disability Inclusive Farmer’s Interest Group (self-help group for organic farming activities) and joined them in a newly formed cooperative society and farmers’ producer company in the block.
This year,Gulab Singh has not purchased any item for agriculture like seeds, chemical fertilizer, chemical pesticide, etc. from the market and hence does not have the burden of loan to be repaid.
His Farmer’s Interest Group is planning to increase organic production in the area and developing value addition and assured marketing linkage with the help of farmer’s producer company.
Name: Gangadhar Dawande
Disability: 90%, hearing impairment with speech-impairment(Congenital)
Age: 38 years
Education: Class 5 (primary school)
Village: Thani, Tq. Athner, Dist. Betul (M.P.)
Gangadhar first replicates the action of milking a cow, by which he means ‘cow,’ and then he sits down pretending to collect something, to denote ‘cow dung’. After being picked by Naman, this is, for the most part, the way he’s trained 35 farmers on organic farming till now.
When we ask him how he learned this,he answers swiftly by pointing his fingers to his eyes and head.
Gangadhar practices organic farming in 11 acres of land and takes care of all the expenses of his family.
Vinayak gives us the gist of his life in just one line – “Poverty forces you out of school and this pushes you towards disability. Disability and illiteracy forces you into more poverty.”
Born to a family of landless laborers, Vinayak was forced to leave school after primary school. To support his family, he started cutting and selling firewood from a nearby forest. At a very young age, Vinayak suffered a severe injury and fracture to his hip bone and legs by falling from a tree while cutting wood. His poor economic condition restricted him from taking proper medical treatment and he was subjected to permanent deformity of the hip bone, which led to locomotor disability.
In 2014, Vinayak got a disability certificate through the intervention of Naman Seva Samiti and became a member of Disabled People’s Organization in his village. He was supported by the NGO to get the benefit of a number of government schemes — disability pension, ration, etc. Although landless, he would show keen interest in organic farming. Hence it was suggested that he starts an organic vegetable cultivation in his home yard through financial support from the cooperative society. They helped him get a loan of Rs.10,000 and an intensive organic farming training in Dehradun. In a short span, Vinayak successfully established his brand in a local market for good quality and delicious vegetables, and started earning up to Rs 1,500 per week. He also started goat rearing and is expecting good profit this year.
Vinayak has confidently enrolled his elder daughter in college for a graduate course in a science subject and has assured full financial support for her higher education.
“Mehnat aur margdarshan sahi mil jaye to na garibi rehti hai, na viklangta (There will be neither poverty nor disability if hard work and appropriate guidance come together),”he smiles.
You can know more about Naman Seva Samiti here . You can also mail at info@ngonaman.org or call on +91 (7144) 286589
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We all know that India is not the most convenient country for persons with disabilities. Due to a severe lack of accessible facilities, persons with disabilities in our country struggle with living an independent and fulfilling life. Going to school, getting a job, going to the doctor, or even getting around one’s own home are tasks that are difficult or even dangerous for persons with disabilities to do on their own.
With the passing of the Rights of Persons with Disabilities Act last December, the Government is starting to take steps to improve the situation, but over the last 30 years, Ferdinand Rodricks has made it his life’s work to give persons with mobility impairments greater mobility, greater independence, and ultimately a greater sense of freedom.
A mechanical whiz and self-confessed car junkie, Ferdi, as he is lovingly known by his customers and friends, has adapted over 1,000 vehicles so they can be independently operated by persons with disabilities.
He has also custom built various types of hoists and fittings to suit the needs of people with disabilities all over the country. His passion is helping people live independent lives, and his work has given thousands a chance to work, go to school, or just go to a friend’s house with ease, comfort and dignity.
“Paralysis, limb impairment or shortness of stature, there hasn’t been a situation where we have not been able to customise a vehicle to suit a person’s needs. Every adaptation is a challenge and I take on challenges that others won’t”, says Ferdi.
One of his most memorable projects was customising a car with hand controls for his friend Sanjay Joshi who is a double amputee. Initially his wheelchair needed to be lifted by someone to place it inside the car. Ferdi and Sanjay burned the midnight oil for over 6 to 8 months and came up with the design of a wheelchair hoist that could be fixed on top of the car. Sanjay was able to operate this single-handedly and became fully independent from that day on.
“I have had such moments with so many people. I cherish each one of them in my heart. I feel very sentimental at times to talk about all the stuff we have gone through together”, says Ferdi.
Mearl Camilo had come all the way from Goa to meet Ferdi. She was a person of short stature so Ferdi fitted the car with hand controls and gave her a high pillow to sit on the driving seat. She learned to drive using the new controls within an hour and was overjoyed to make the transition from being dependent on her parents and brothers to driving by herself.
On Mearl’s return to Goa, her elderly mother called Ferdi in tears. “Today my daughter drove me to the church and I was able to attend mass for the first time in months. I was so proud to see my daughter, who used to have difficulty even getting in the school bus without help, behind the wheel and driving with confidence. You have changed our lives. Thank you.”
“There are so many of them whom I have taught to drive. I have seen tears of joy in their eyes after being able to drive. You can imagine the flow of emotions they go through at that time”, reminisces Ferdi.
An equal amount of R&D goes into designing a patient hoist. When Ferdi met Lidwin she was in her late forties, affected by polio and walking on her knees. When her knees eventually collapsed she was forced to use a patla (wooden board with wheels) to move around and was confined to living and even eating on the floor. Her profession as a tailor also took a hit because she was unable to cut clothes on the floor.
Ferdi designed an electrically-operated portable hoist which could be used to lift her from the ground to the chair level. She could easily transfer to a chair and finally have a meal at the dining table with dignity. She could also resume her tailoring work as she could once again cut comfortably on a table.
“She was a heavily built person. I had to make sure that what we gave her was good and should not topple with her on it. Whenever safety comes into play, I take hundred percent precaution”, insists Ferdi.
Most recently, Ferdi has started distributing a “water wheelchair”. This floating chair is a safe and secure way of taking a person with a disability into the sea or a pool. There is no fear of drowning or tipping over because the person sitting is strapped adequately and the chair is supported with floaters all around. The amphibian chair made its debut at #BeachFest2017, an accessible beach festival organised by UMOJA early this year, where it gave dozens of wheelchair users a chance to experience floating in waves for the first time in their lives.
“Whenever I travel abroad I look out for new ideas and experiences that I can bring back to India. The amphibian chair was one of such initiatives to make the world around us more inclusive”, says Ferdi.
Ferdi has a grand vision of setting up an inclusive rehab cum recreation center where people with all kinds of disabilities can come, move about freely, and participate in accessible activities they can currently only dream of. His vision includes a small petting zoo, accessible classes in gardening, drawing, or cooking, and even sports facilities for wheelchair basketball. There will also be accessible boarding facilities for kids and adults who need special care. Their families and regular caretakers can take a break for a few days and the staff at the center will take care of them.
“Many people with disabilities are at the risk of getting inside a shell because of loneliness and depression. But when they will come into this vibrant environment and meet people who face similar challenges, it will change their perspectives forever. This will be truly fantastic and something unique that we can create for mankind”, says Ferdi enthusiastically.
Ferdi is a true example of actions speaking louder than words. While the government and society are now becoming sensitive to the requirements of people with disabilities, Ferdi has been leading the charge for decades. By finding a solution for almost any requirement, Ferdi’s work has empowered thousands of people across the country, giving them a chance to learn, earn, and live with dignity.
Written by UMOJA blogger-at-large, Mrunmaiy Abroal. Living with a cervical spinal cord injury since 2011, Mrunmaiy has not let disability curb her enthusiasm for embarking on new journeys.
At UMOJA, we salute people like Ferdi who are making India more inclusive and accessible. If you know people who are doing fantastic work to build a more #AccessibleIndia and deserve a shout out, write and tell us at info@umoja.in.
UMOJA is India’s first and largest portal for persons with accessibility needs. To learn more about our work at UMOJA, visit www.UMOJA.in.
A certain lack that prevents a person from doing ‘normal’ things that every regular person can or a tag that acts as a blockade to every opportunity that comes along?
Thankfully, the lessening usage of the term ‘disability’ in current times is in itself a harbinger of awareness amidst people of the fact that any sort of impairment doesn’t make a person any less abled.
Various organisations across the country have been working towards the welfare of people afflicted with different forms of impairment in order to make them self-sustained and independent.
One organisation in Manesar, Gurugram, has been working towards revolutionising the employment landscape for the differently abled and, along the way, relieve them off the tag ‘disabled’.
Courtesy: Nabet.
National Association for the Blind (Employment & Training) or Nabet is a social enterprise that loops in corporates who in turn offer industry level training and subsequent employment to the folks falling under the differently abled strata.
The brainchild of two brothers, Abhishek and Arjun Mishra, who kickstarted the venture in 2011, the decision of empowering the differently abled was instilled by a personal reason.
“Our grandmother who suffered from blindness had been an elemental factor for raising our cognisance towards the state of the people who had different types of impairments,” says Arjun.
Starting in 2009, the duo approached many local companies to get an insight of the nature of skill requirement on an industry basis.
“We sought their assistance in designing and developing a course curriculum to meet specific needs for the blind,” he says.
A training methodology was then charted out to club together these needs and the necessary software that the trainees could use.
Courtesy: Nabet.
“Since the IT & Telecommunications industry is on a forever boom, our focus was primarily on these sectors where the visually impaired trainees could be employed,” Arjun adds.
In 2011, the pilot batch of 15 visually impaired individuals was launched in collaboration with Idea Cellular, under the Aditya Birla Group. Organisations like Mahindra Group, Vodafone and Jeevansathi have worked with them over the years.
“More than a non-profit organisation, we wanted to enter as a social enterprise that provided manpower for industry jobs. The difference here was that this included the differently abled, whom society deems as being non-productive. This is what we wanted to change,” he explains.
The employment opportunities provided by Nabet includes sections like contact centre, data entry, software testing and accessibility testing.
Courtesy: Nabet.
“There are two ways we carry out our processes. Either companies can outsource the jobs, where we provide our centre from where the employees can work, or they can offer workplaces themselves,” Arjun says.
So far, all the capital for the project, including setting up the institution-cum-training centre as well as equipment and other paraphernalia, has been self-funded by the brothers.
“Our aim is to give the differently abled a shot at working in the industry. Instead of losing out on opportunities just because society thinks they can’t be productive enough, we want them to have a life that they can live independently out of their own earnings,” says Usha Mishra, who is Nabet’s managing trustee.
From the initial team of two, today Nabet India has a workforce of 70 employees who have been actively contributing towards enabling better skill training and employment opportunities for the differently abled. “Though we had started out keeping in mind the visually impaired, today we have orthopedically challenged persons in our team who are being trained effectively,” Arjun adds.
The brothers’ contribution towards making the lives of the differently abled a lot better hasn’t gone unrecognised.
Abhishek(left) and Arjun(right).
In fact, Abhishek has been offered the prestigious Global Good Fund fellowship for 2017 representing southeast Asia. Arjun, on the other hand, has been bestowed with the Royal Commonwealth Society fellowship for 2017 and was one of the runner’s up for Queen’s Young Leaders Award for 2017.
Of future plans, Arjun mentions being in talks with the Ministry of Social Justice to launch a centralised helpline for the differently abled that can be accessed for any kind of query — ranging from basic employment inquiries to even reporting abuse.
“We have been working on it and hopefully the project will sprout wings soon enough,” he adds.
You can reach out to Nabet by writing to them at nabetmanesar@hotmail.com or call at 8506002074 / 9718903091.
A host of people in India have stayed true to this credo of living and made a difference. Not only to their own lives, but also to that of others. They inspire people to look beyond the physical limitations of an individual.
One such person is Madan Lal, 45, from Haryana, a tailor by profession and vocation, who was born without arms.
Haryana: Fatehabad man Madan Lal, born without arms, is a professional tailor, fulfills everyday needs using his feet. pic.twitter.com/nIEh5Y8RAC
As a young student with disability, Madan Lal was denied entry to even an inclusive school, but that did not deter him. “My family couldn’t afford to educate me, and I thought that the government wouldn’t help me either. So I’ll have to do something to survive in this life,” he told Daily Mail.
At 23, young Madan decided to pursue tailoring to earn his livelihood. After a long search for a trainer, he eventually found a teacher willing to give him a chance. The only question asked was, “You don’t even have arms. How will you stitch?”
He travelled to Fatehabad and learnt the art in the short span of a year. Today this local hero owns a shop and stitches beautiful garments, all with the help of his talented toes.
“Whatever I have to do in my life, it’s just with my feet. All the stitching work I do with my feet. From cutting the cloth to measurement, I have to use my feet,” he told ANI.
Even after starting his small business, he came across a few people who were sceptical about his skills at first. “People used to make fun of me. They never believed that I would learn tailoring using my feet. They would say, “He stitches with his feet, he will ruin our clothes.” Then I slowly started to win their confidence,” he shared, according to the Daily Mail report.
While growing up, his disability did not bother him because his grandparents would take care of him and his daily chores.
Initially people used to hesitate. Later,they understood that I'm a real tailor. Also giving training to children in 5-7 villages: Madan Lal pic.twitter.com/cSrsRorHrB
Establishing his own shop gave him independence and a new lease of life. “That day I forgot all the sufferings. It was the best day of my life. I saw people coming to my shop to greet me. The whole village was happy, as if they were part of my family,” he said.
Today everyone visits Madan Lal’s shop showing him immense support and love. He is also training five to seven children from the village.
While many countries across the world have made public places differently-abled friendly, a large number of places in India aren’t as inclusive.
Provisions for the differently-abled do not only mean restrooms and toilets in public places, but a lot more.
Most of us love travelling and exploring new places, but what about those of us who only dreamed of doing so because of certain disabilities?
One young woman from New Delhi decided to tackle the issue. Today, she runs an organization that makes travelling a lot more accessible and inclusive for the differently-abled.
Planet Abled was conceived in 2016 by Neha Arora, whose parents are differently-abled. Coming from a family of travel enthusiasts, Neha realised that travelling with disabilities in India was not an easy option.
“My father is blind and mother is a wheelchair user, but we all are fond of travelling. We would face a lot of issues in terms of accessibility and the kind of leisure activities available when we travelled. This made me think that others might also be facing the same problems”, Neha told New Indian Express.
The 33-year-old spent two years researching the various options that enabled large and varied groups of differently-abled people to travel together.
In 2015, Neha finally quit her job at Adobe and decided to start filling this gaping hole in the travel industry.
She had many challenges along the way, starting with just convincing people to travel. When the first tour was organized in 2016, many people were apprehensive. However, after the tour, their doubts were quashed as they had a great time.
In July, she managed to successfully conduct a 17-day tour that spread across two countries, five states and 13 cities, with many differently abled people.
Many tourist locations had only steps and no ramps to help the wheelchair-bound travellers move about freely. Planet Abled brought in a portable ramp to make places more accessible.
Other challenges included finding the right people who could take up the responsibility of moderators and guides, as well as funding the tours.
Neha managed to pass the initial hurdle by using her own savings and also taking loans from friends and family. Although the budget is tight, what keeps Neha motivated is the change she is able to bring into the lives of people.
“When people come and tell you that because of you they had the best day of their life; it was the first time they stepped out to see something beautiful; and they had been living in the same city for 20 years but never ever visited a heritage monument; you know you are touching the right chord somewhere,” she added.
What does the road ahead look like? Neha is currently working on an inclusive travel meet slated for September 27 – World Tourism Day. Through this she hopes to share stories of travellers with disabilities and start a conversation about tourism for the differently-abled.
You can reach out to Planet Abled at travel@planetabled.com.
Innovation differs from an invention with its ability to improvise an existing mechanism to deliver better results. And if innovation can change lives, then its purpose is served.
The Enable Makeathon is a unique social movement, which brings together the fields of humanitarian action, disability, innovation, entrepreneurship and technology under a single premise.
Started by the International Committee of the Red Cross (ICRC) in 2015, the initiative calls for new, innovative solutions that enable those with disabilities to cope with their daily challenges and live their lives with dignity.
What makes the initiative unique is that the teams do not conjure up solutions out of the blue. During the 60-day programme, they work with differently-abled people to understand the extent of the disability in close quarters as well as with technology and design experts who help them incubate the brainchild.
In the first edition of the Makeathon that took place in Bengaluru, close to 186 teams had applied from across the world, which trickled down to 32 for the final program.
The winning teams of Enable Makeathon 1.0. Source: Enable Makeathon.
While every final submission stood out for its innovative solutions and deep retrospection that went behind the process, the ones that emerged winners were indeed remarkable for their design and application.
From an adjustable chair for children with cerebral palsy to a convertible wheelchair, here are some of the noteworthy innovations of Enable Makeathon 1.0:
1. Mobility India
Twin Chair for children with cerebral palsy. Source: Youtube.
For children with cerebral palsy who have severe movement limitations, Riyaz H, Trivikram, Indra Sena Reddy, Shiva Kumar, and Praveen of Mobility India came up with a low-cost, prefabricated device that can assist parents to help the kids sit as well as a stand.
With cerebral palsy being extremely debilitating, the innovation with its twin-seat facility comes as a boon for the parents who spend most of their lives tending to the children. With an adjustable frame, the device can be adjusted to facilitate a child as he or she grows.
2. Outdoor Mobility device
Outdoor mobility device. Source: Youtube.
To develop a single solution for both indoor and outdoor mobility was indeed a challenge for Team Aseem’s Swostik Sourav Dash, Ashish and Vivek Sarda.
After understanding the inconveniences faced by the wheelchair-bound while commuting, they came up with a quick and easy add-on to a manual wheelchair that can be converted into an outdoor mobility device.
Available in both manual (handcycle) and motorised mode, the attachment has been proven to meet the needs of different users.
3. The Fuji Foot
The Fuji Foot. Source: Enable Makeathon.
Gary Wall and Rochelle Dumm of RightFit Prosthetics came up with prosthetic feet that are not only lowcost and waterproof but can store energy as well!
With multi-axial capabilities designed for rural low-resource settings and flexible enough for rough terrains, the Fuji Foot was conceptualised by the only international team in the final five, with an aim to improve access to prosthetic care around the world with extreme affordability.
4. MAK- My Ability Kit
The My Ability Kit. Source: Enable Makeathon.
People afflicted with spinal cord injuries and similar medical conditions often have limitations with their grip and hand movements. Coming up multi-utility attachments that can make activities of daily living a smooth sail, Nekram Upadhyay has put together a kit comprising add-ons that can be used by a person independently.
From holding regular objects like a tumbler, pen, toothbrush, etc. to type on mobile phone or computer, the My Ability Kit (MAK) lets one get better of their failing grip and is quite affordable.
Coming along is the second edition of the initiative, Enable Makeathon 2.0 which will have a three-month extensive programme running from December 2017 to February 2018.
Inviting differently-abled individuals, designers, engineers, humanitarians and entrepreneurs to join forces and develop affordable and assistive solutions for the disabled, ICRC intends to sprout wings to the ideas of innovators and develop these into a solid business plan and prototypes.
While the first round of application has been closed, ICRC is still accepting entries by those who wish to be part of the programme and make a difference with their concepts. The last date for application closes on September 30.
The Enable Makeathon co-creation camps and incubation will take place in two simultaneous locations; Bengaluru, India hosted by the ICRC and London, the UK hosted by the Global Disability Innovation Hub and University College London.
In a 2011 report, the World Health Organisation (WHO) estimated that 15.3% of the world’s population deals with some kind of disability.
The 2011 census numbered India’s disabled at 2.21% of the population. 28.2% of children with disabilities remain out of school, according to the 2014 National Sample Survey of Estimation of Out-of-School Children between six years and 13 years in India.
While these are just statistics, hardware engineer Parvez MA Farid experienced these numbers first-hand while growing up in Mumbai’s Mumbra, when the population of the area suddenly spiked.
Parvez Farid
And what a spike it was.
After the Bombay Riots in December 1992, Mumbra’s population grew 20 times. According to one report, it grew from 45,000 before the 1992 riots to more than 9,00,000 in the 2011 census!
The swollen population brought with it decreased sanitation and an increase in the risk of diseases. This danger hit pregnant mothers especially hard, often causing disabilities in their unborn babies.
Once again, Parvez, who was running a computer training technical institute called Hindustan Academy, discovered these facts first-hand. His nephew, Salman, was born with a mental disorder.
The quest to get his nephew educated is what set Parvez on the path of ‘Ummeed’, which means hope.
Parvez had visited every school in Mumbai to get a seat for his nephew. However, none of them was willing to take the child.
“For almost eight years we tried to send Salman to a school, without any success. There’s no school for differently-abled children in Mumbra. There’s only one government school in Thane, and the rest are private schools where there is a waiting period of almost three years,” says Parvez.
It is not like the government has not tried to address this issue. But once again it was a case of misplaced priorities and shoddy implementation
“Since 2010, as per the government’s Sarv Shiksha Abhiyan scheme, regular schools need to accommodate these students. So, they have stopped granting special schools. However, practically, normal schools avoid taking them. So, where would they go,” says Parvez.
After trying in as many schools as they could, Parvez finally decided to teach Salman himself in 2010 – when the boy was 14. But why not help many others like Salman, thought Parvez.
Thus, he laid the foundation for Ummeed by renting a small room in Mumbra.
He started surveying every house in the area to find differently-abled children who were refused admission by schools. This was the most challenging part of his mission, as people usually refused to believe that their children were not ‘normal’.
“The denial was more in the case of girls. Parents wouldn’t accept that they had a disability – especially in the case of mental disabilities. These kids weren’t allowed to come out of their houses either, to hide this fact. I have even seen parents hiding this during the census, hence, I believe the disabled population might be more than the official number,” says Parvez.
After persuading parents for months, Parvez finally got some students. For this, he had to first educate their parents about government schemes available for the kids.
There are numerous schemes by the government for the disabled. However, according to Parvez, these schemes do not reach the intended.
As Parvez says, most residents in his locality stay in slums of rented huts – they have no residential proof. Moreover, for every benefit, the disabled have to visit different government offices where there are no sitting arrangements or facilities for them.
“An IQ certificate is given only once a year to everyone in a day. How can 3% of India’s population be given the certificate in just one day?” Parvez questions.
Parvez arranged certificates, passes and all benefits for these children, along with giving them medical and intellectual help.
Apart from helping them get a disability certificate, tests, passes, benefits and opening bank accounts, Parvez also took special care of the health and education of the children.
Special doctors, teachers and physiotherapists were appointed to look after his students. Friends and well-wishers soon pitched in to help and people were more than willing to send their kids to Ummeed.
With more support from the Khidmat Foundation, Parvez moved to a 1000 square-feet area in Mumbra to accommodate more children.
Today, Ummeed provides free education, medical help and vocational training to more than 300 students in its school.
Over the past two years, students of the Ummeed foundation have appeared for the class 10 exams. “13 kids passed class 10 last year. This year too, 13 kids are in class 10,” he told The Better India.
Vocational training to make flower arrangements, greeting cards, diyas and crafts are also given to the students. Recently, the kids delivered an order of 600 flowers to the Hotel Grand Hyatt in Mumbai.
The classes are run in two sessions. The morning session is for the mentally challenged kids, while the afternoon session takes care of children with multiple disabilities.
Disabled people are aided in all ways possible. Ummeed Foundation provides them with medical fees, medicines, medical equipment like callipers, wheelchairs, tricycles, hearing machines and surgical costs among others.
Counseling and guidance are strong and vital helping tools for these students, according to Parvez.
Many of his students are just slow learners who have dropped out from school because our education system doesn’t accept kids who score low marks. He points out that these kids are good in other activities and just need some attention and a better approach by the system.
“Every child is special. Some might need less help and some more. Our society, system and public spaces are developed according to the 97% and ignore the 3%, who are a crucial part of our society. We don’t care about them because they don’t walk on roads, they can’t roam around in malls, or they can’t be a part of normal schools. However, a slightly different approach can help them contribute great things to society,” says Parvez.
Salman, because of whom Parvez started his journey, is a well-learnt child now. He has cleared three exams in class 10 and is appearing for the remaining three this year.
If you wish to help him in this noble cause, then please log on to www.ummeedfoundation.in or call him on 9029320222.
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TEACH, or the Training and Educational Centre for Hearing impaired is an initiative that helps deaf students from vernacular medium schools. It also assists them with higher education and professional advice.
Students, who have studied in vernacular languages, are trained for three years in English & Maths, starting from grade 10, which prepares them for their higher secondary exams (H.S.C) in English.
The criteria to appear in the H.S.C exam in the Maharashtra Board is to clear the English language exam in the S.S.C boards. However, members of TEACH realized that most of these students were taught the equivalent of grade 1 or 2 English and hence, were not equipped to take the H.S.C examination.
Students learning at a TEACH centre.
TEACH also partners with individual schools to teach kids from grade 7 upwards, to supplement their existing syllabus.
Since TEACH aspires to be the stepping stone for educational success today and tomorrow; the team strategised to reach out to the students in schools and teach them English.
Learning English in school will help them save the first year from the three-year program of higher education. English being the universal language of communication, our aim through ELP is to help the students have a strong English written communication and the required knowledge to lead their life independently.
There are very few deaf people employed in corporate or government jobs as not many qualify/ meet the criteria to be placed in these organisations. The differently abled quota (job) for deaf goes unclaimed as they do not meet the necessary educational qualification for these opportunities.
TEACH wants deaf children to use the opportunity and be eligible for jobs that can have them placed in government & corporate jobs.
They implement the Indian Sign Language (ISL) in their teaching and communication with the students.
The initiative adopts the methodology of “Total Communication” a blend of sign language and oral communication for educating children.
Also, it involves volunteers from top B-schools and colleges well equipped with knowledge sharing skills and will to support.
The initial plan is to reach out to the children all over Mumbai and then extend its reach to the rest of the nation.
By Heena Singh
The team is working and tapping in to each and every possible kind of donation, funding and
means to raise funds which will encourage the students to dream a better future. Along with
reaching out to students in Mumbai, TEACH plans to spread its footprint across cities in the near
future to cater to as many students as possible. To do so they will need help, support, contribution
and encouragement from all quarters.
Meet Harini Sivakumar, mother to two boys and an entrepreneur based in Gurugram. A typical day in the life of this lady begins at 6 am when she goes out for her daily cycling fix.
At 7:30 am, she gets back home and gets her boys ready for school, after which she completes her emails and pending work.
From 1 pm, it’s again taking care of the children – making lunch, afternoon naps and park – play time till 6 pm. In between, she snatches some time to finish some more work. In the evening, its homework, dinnertime, and bedtime by 9 pm.
This seems like a routine you and I would follow with our kids, right?
The only difference here is that Harini’s older son, Bhargav, has Down Syndrome. This is the inspiring story of one mother and her son.
Unconditional love
Harini Sivakumar was born and raised in Chennai. After completing her MBA in retail management, she worked for a while before getting married in 2009. She moved to Hyderabad post marriage, and within a year, Bhargav was born.
Speaking to The Better India, she says, “I was 22 when Bhargav was born. I vividly remember the doctor giving us the news that our child has Down Syndrome. I had no idea what it even meant, and I lay there on the hospital bed googling it to try and understand what it is. Would he walk, would he talk, would he look different? I had so many questions.”
Harini, like most parents, went through various phases before finally coming to terms and accepting her child.
Just because you don’t look like the other crayons in the box, does not mean you still can’t make the most beautiful picture.
“I was in a state of shock and denial, in the beginning, telling myself that this could not happen to me. That gave way to trying to accept the situation and empowering myself with knowledge about what Down Syndrome meant, and finally, after a long struggle, acceptance came. Post acceptance, it was all about the need and desire to make the environment around Bhargav as conducive as possible.”
It was also a difficult time for Harini because she knew that she would not be able to go back and work full-time in the corporate sector.
“I knew it was next to impossible ever to go back and work. I just had to be there for Bhargav, and take care of him.”
Harini moved to Bengaluru where she enrolled for a Master’s Degree in Special And Inclusive Education. “My primary motive in doing this was to help Bhargav. I felt that there were only limited resources that were available for nurturing children with Down Syndrome. More often than not, it is the lack of understanding.” she said. Harini wanted to equip herself to be able to take care of her son.
“In doing the course, I realised how unaware people are about Down Syndrome. While some of them had heard about it, no one could say for certain what the issue was, and how to address them. Most schools proclaim to have the resources to address special children, but mostly they would just have a separate section in which club all the children with different disabilities together – ADHD, Autism, Down Syndrome amongst many others. That I realised was a huge mistake,” says Harini.
“There is no one size fits all – each of the issues are different and needs different means to address them.”
Down Syndrome is NOT an illness. My extra chromosome makes me extra cute.
Children with Down syndrome are sociable, and they like meeting people and spending time with other children. Children with Autism spectrum disorders, on the other hand, may or may not like being in the company of many others. Clubbing them all together means doing them all a huge disservice.
Inclusivity doesn’t mean putting children with special needs together in one class. The idea is to let them express their emotions and feelings by being among other ‘normal’ children.
Harini with Bhargav
Having to give up a corporate job where she was drawing a salary of almost a few lakhs was difficult for Harini.
“I knew I had to do something for myself. Yes, I had Bhargav to look after, but I knew that I shouldn’t make that the only thing I did in my life. What I couldn’t cope with was the fact that I wouldn’t ever be able to do anything for myself. I didn’t want to blame Bhargav for my not being able to do anything,” she says.
That was when the entrepreneurial bug caught Harini. She started her venture called Soap Works.
“That was the time when many people were shifting to using natural products, organic ingredients etc. I felt that was the right time to launch my soaps as I saw a huge potential for it.”
Wearing the entrepreneur hat
The death of her mother in 2014 came as a huge blow for Harini. “She was the healthiest person I knew. She was only 50 when she passed away from Cancer. She would walk regularly, ate healthy and yet cancer struck. I remember shouting in frustration at the doctor asking him how my mother could get cancer.”
While the doctor didn’t say anything at that time, some time later he told Harini that while we may be leading healthy lifestyles, our environment is becoming so toxic that we are becoming increasingly susceptible to diseases like cancer.
“Soon after Bhargav was born, the one question that was often asked of me was if I ever visited Kalpakkam anytime during my pregnancy.”
Let’s be truly inclusive
“This not only surprised me but also left me thinking about the kind of environment we are living in,” she says.
Kalpakkam is where the Indira Gandhi Centre for Atomic Research is located and also co-habits a nuclear power plant.
That one question remained with Harini even years after Bhargav’s birth. She started making small changes around the house.
She actively started looking for vegetables and fruits that are organically grown. While the changes were small, she feels that they will help her and her children in the long run.
“March 21st every year is celebrated as Down Syndrome awareness day, and that is when I decided to put up a video of Bhargav in a bid to educate people about it. I started doing this in the year 2015. My biggest achievement in making the videos is that I got people talking about it and changed the perception of many,” she says.
Harini says it is very important for parents to remove worry from their lives. There will always be a reason to worry – if your child isn’t crawling when he’s supposed to, if your child doesn’t speak when he is supposed to, and even if you feel your child is underperforming in class.
She urges all parents to try and enjoy the small moments and not worry about everything. Through her journey with Bhargav, the biggest lesson that Harini has learnt is to let the children be. They will all achieve their milestones, some early on in life and some maybe later, but eventually they all get there.
Speaking about the biggest life lesson she has learnt from Bhargav, she says, “Bhargav taught me to truly enjoy and appreciate my life. He taught me that going slow is good.”
At DAG Modern in Mumbai’s Kala Godha, if you’re lucky enough, occasionally you can hear discussions on art that are unique.
Often, the voices you hear are not of students of art or its connoisseurs, but of children from a blind school who regularly visit the gallery under a programme called ‘Abhas’, a tactile art walk.
Since the museum has tactile reproductions of the paintings, these children get to experience art not through the conventional sense of sight, but through touch.
Accessibility Consultant Siddhant Shah at work.
As a Heritage Architect and Access Consultant, this is what 27-year-old Siddhant Shah does. Since 2015, he has been working with museums like DAG Modern to help create a world where anyone can have access to our museums, art galleries and heritage, irrespective of the kind of disability.
So, what made Siddhant take up the cause?
Siddhant Shah’s organisation ‘Access for All’, is bridging the gap between art and culture and people who want to access it.
As an Architecture student, Siddhant and his team participated in a competition hosted by Archeological Survey of India (ASI) and United Nations Educational, Scientific and Cultural Organization (UNESCO) to make Indian heritage sites disable-friendly.
He credits this competition as his first introduction to “how architecture, heritage and disability needs come together.”
More than his team winning the competition, which it did, he realised how to adapt theories of tactile models into real-life scenarios.
Eventually, when he was studying MA Heritage Management in University of Kent’s Athens Campus, Greece as a Starvos Niarchos Scholar, he was struck by the inclusive, disabled-friendly cultural institutions.
In India, let alone the facilities, even the conversation around disability issues can be challenging.
Siddhant with a group of kids on one of his museum walks.
Since his mother is partially-sighted as well, he considered her needs as the benchmark for all the designs he did while working as a consultant for various museums, after his return from Greece. However, not many museums were keen on giving him a chance to explore this avenue.
“As I was approaching different organisations and museum and writing to them, none were interested. They said they were not looking into this because they didn’t have any visually impaired people coming to the museum. But, the reason they don’t come in because they don’t have the facility! Luckily, the City Palace Jaipur said Yes!”
All these experiences with cultural institutions of India prompted him to set up his own organisation that would try to bring the accessibility issues in the mainstream.
Through his 2-year-old organisation ‘Access for All’ he has already worked with National Museum in Delhi (where he was instrumental in setting up Anubhav Tactile Gallery), City Palace and Jawahar Kala Kendra in Jaipur, Serendipity Arts Festival in Goa among many others to produce tactile reproductions, braille books and organise Abhas tactile walks. Additionally, he also designed the first museum braille book in Pakistan, for State Bank Museum in Karachi!
These accessibility initiatives can be life-changing for many, who are kept outside the enriching world of art and culture, thanks to their disability.
In fact, once when the children in the Abhas tactile walks were asked by Siddhant what do they remember from their previous visit, they could comfortably talk about Jeram Patel, whose iconic profiles they ‘touched’ in their previous visit, and thoroughly remembered all thanks to the braille brochures he designed.
“When we visit museums, we can take home brochures. But for these [visually-impaired] children, there is nothing which they can take back. That’s why we started making these braille brochures so that they can take with them.”
Braille Books designed by Siddhant for Jaipur’s City Palace Musuem.
For Siddhant the experience of coming face to face with the impact he has created can be often surreal.
In one instance, he remembers a boy who was able to successfully identify an SH Raza painting after encountering it for the first time at an industrialist’s house in Mumbai, where his father works as a driver:
“It was a beautiful painting with bright colours and geometric shapes. Hence, it had a lasting impression on his mind. Imagine, if these kids could be given basic access and information early on, they can observe and learn so much! It was one of the most touching moments of my life.”
Siddhant’s idea of accessibility is not a narrow one. He wants to include people who might otherwise be deemed as conventionally ‘normal’, but may lack the financial and social resources to access art and culture.
“In a museum, an architect’s job is not only about providing ramps, wheels and toilets as many seem to believe. One should also make sure that even the knowledge stored in these walls need to be communicated. That is why I introduced the idea of ‘intellectual accessibility’,” says Siddhant.
The tactile reproductions with the ‘please touch’ sign invites the visitor to experience art through senses other than sight.
With this concept of ‘intellectual accessibility’, Siddhant is addressing an issue that art world doesn’t want to acknowledge – its fondness for jargon.
“For example, the captions in museums are difficult to understand even for someone from the same field because the language is too advanced. It is important to give a personalised experience of the museum. Hence, a simple act of having the captions in the local language can make a lot of difference.”
Currently, ‘Access For All’ is working to make Mehrangarh Fort in Jodhpur accessible through a comprehensive project, where it is not only looking at the fort and gallery but also its website and social media to promote accessibility.
Siddhant believes in the potential of technologies like 360-degree virtual reality which can be a boon to people who cannot access the physical space. His idea of accessibility is based on the motto, ‘Bringing context to the people and people to the context’.
Since the organisation, as well as the work it does, is fairly new, Siddhant is looking for opportunities to work with organisations and cultural institutions on the issue of accessibility.
To contact Siddhant, email: shahsiddhant12@gmail.com
Website: www.accessforall.co
Vinay Kumar, who is from a small village, Nagla Raja in Etah district of Uttar Pradesh would have been a labourer today had it not been for a chance encounter with Amit Yadav – a differently abled young man who inspired him to help such people in our country.
Today Vinay is a Gandhi fellow who educates disabled girls about menstruation.
Vinay Kumar
Although Vinay’s parents wanted to educate him further, they did not have the resources for it. After class 12, he moved to Noida, where he became a construction worker. On an occasion back home, he met Amit, a law graduate who had polio. Amit was shocked to see Vinay employed as a construction worker because he remembered him to be a bright young student.
Amit urged him to give higher studies a shot and even offered to fund it. After some thought, Vinay was keen on becoming a journalist.
Vinay (right) with Amit Yadav (left)
“It is because of Amit Bhaiya that my dreams had wings. As I saw him working for the rights of disabled, I found that he was even more efficient than his able-bodied colleagues. This made me realise that disabled people can do wonders if we support them. I wanted to repay him by helping for the differently abled,” says Vinay.
After graduating in Media Studies from the University of Allahabad and getting a post graduation diploma in Advertising and Public Relations, Vinay was hired by the UP government to work in the Department of Information and Public relations. But his strong calling to aid the differently abled took him on a different path.
In 2016, Vinay left his government job. He applied for and succeeded in becoming a Gandhi fellow. He was given a project to work in the government schools of Mumbai and Thane.
Vinay with the kids of government school in Mumbai
As Vinay was also interested in theatre, he would often do dramas along with the slum kids who studied in these schools.
He wanted to do a drama with the disabled kids. His search took him to a particular school – Ummeed in Mumbra, Mumbai.
Mumbra has a large Muslim population, and it was a difficult task for Parvez, the founder of Ummeed to get the disabled girls out of their houses. However, Vinay soon mingled around the kids and started involving them in his stories.
But it was one incident that changed the course of Vinay’s teaching module.
While Vinay was talking to the director of the school, Rihana Salamat, a lady approached Rihana, asking if she could recommend a place where she can get her disabled daughter’s uterus removed.
Vinay – The storyteller at Ummeed, Mumbra
Initially, Vinay was under the impression that this was because of a medical condition but was shocked to learn that parents opt to remove their disabled daughter’s uterus to avoid the sanitation problems during menstruation and also to avoid the shame of getting impregnated if the child is molested.
“‘How can we deny something so natural’ was the first question I had in my mind,” says Vinay.
Vinay then contacted Shuma Banik, and Vijayata Pandey, another Gandhi fellows who were working against menstruation taboos in Surat with their campaign – Happy Periods. With their help, Vinay began to learn more about menstrual hygiene.
In collaboration with Aakar Innovations, The Better India is setting up a sanitary pad manufacturing unit in Ajmer, Rajasthan, that will not only produce eco-friendly or biodegradable sanitary pads, but will also employ women from rural communities around the area.
He also came to know the hazardous side effects of removing one’s uterus at such an early age. Through his study, he learned that many girls had irregular menstruation cycles. However, their parents do not factor this while removing the uterus, often thinking it is linked to the disability. Moreover, as they are dependent on their mothers on these days, they are relieved if they don’t get their periods for few months.
“Periods are natural for girls. Just like how abled girls need medical help if they have irregular periods, it is the same for these girls too,” informs Vinay.
After collecting all the information and lot of support from Rihana and the teachers of Ummeed, Vinay and Shuma designed a module to make these girls period ready.
The module was based on the following two outcomes of their research–
Girls with intellectual disabilities usually go through puberty at the same time as those without disabilities. Their level of understanding, however, may present a challenge to learning the skills necessary to manage their menses. The approach to menstrual management in girls with disabilities should be the same as it is for other girls. Advice may need to be tailored according to the severity of the impairment.
2. Girls who can manage their toilet hygiene can usually learn to manage their menses independently. They need preparation for the menarche with information appropriate to their level of understanding. All girls need information provided in ways that are appropriate to their level of knowledge. Girls with disabilities require clear, direct information, and opportunities to practise new skills.
Project SAMARTH was designed for 40 disabled girls and their Mothers which was worked out in 4 phases :
Awareness: Customizing the workshop according to the specially abled girls, like using picture comics, Menstrupedia to communicate with them.
Teach & Practice the required skills: Enabling the girls to deal with menstruation by themselves without being dependent on others.
Continuous tracking with the help of teachers and provide necessary support.
Designing a specific syllabus where both the students and the mothers will be facilitated about the same in the school.
A team of three women teachers were under the supervision of the director of the School. Girls were divided into three groups according to their disability and taken care by these three teachers separately.
The team collected data from these girls’ health and awareness about menstrual hygiene.
“These teachers have strong bond and understanding with these girls because they teach and take care of them daily. When we found that there is almost no conversation among mothers and special girls regarding menstrual health is happening and most of the mothers are themselves not aware. We invited them for a workshop,” says Rihana.
Thirty-one specially challenged girls attended the workshop along with their mothers.
“When we started off with the workshop, everyone was shy and disinterested. They couldn’t even look at the video learning material that was being played. But as we proceeded, it was an eye-opening experience for us,” says Vinay.
The workshop was a huge success where mothers confessed that how they have been neglecting their own and their daughters’ menstrual health. Most of them were ignorant about menstruation and many questions related to it.
According to Shuma, the girls and their mothers started asking personal health questions without hesitation. It was sensed that all of them wanted to talk about this issue but have never been given a platform to discuss. Some of them agreed that they have been ignorant about menstruation and they have paid the price for it, but they won’t let their daughters suffer.
The girls were trained separately according to the type of disability.
For the children who with mental disabilities, the module was designed in such a manner that they will be told about it and asked to practice again and again to remember the steps. Helping the kids who were already toilet trained despite their disability was also not a difficult task. However, when it came to deaf and mute girls, Vinay and his team had to face some challenges.
“All the special teachers who knew sign language were males, and we wanted female teachers to communicate with them to make them comfortable initially. Moreover, there is no sign language made specially to describe menstruation as it is never taught to these kids,” says Vinay.
However, the team was relieved when one of the girls who could not hear or speak took up the challenge. Once she was taught about it through a comic book, she not only understood it but also helped her mates understand it in her way.
“This was really a proud moment for me. I felt as if we have crossed one hurdle and helped these girls reach at least to a place where they are confident to speak about their own body,” says Rihana.
One to One Counselling
One to one sessions for special girls and mothers was conducted to cater specific challenges as disability varies among them. A gynaecologist was also present at this meeting where mothers discussed their problems and challenges faced during menstrual management of their daughters.
The Doctor solved the queries and referred some of them to clinical treatment as well. The Samarth team kept track of the parents’ visit to the clinic along with the prescribed medicines.
The team also collaborated with Rehmania Hospital in Mumbra to provide the cheapest/free treatment and counselling.
In upcoming months these girls and mothers will be on the team’s follow up and tracking system. They will be ensuring that mothers help girls in practising steps required for menstrual management. They will also continuously keep in touch with them to know the challenges they are facing during this time and support them accordingly.
Vinay and his team are in the process of designing separate modules for children with various disabilities to teach about menstruation to individual kids and their mothers in the school. They are also planning to conduct similar sessions in all the schools of Mumbai soon.
“I think just like we remember the birthdays and anniversaries of our mothers, wives, sisters or daughters; we must also remember their menstruation date and be more sensitive towards them in those days. Only when men and women both will be aware, we would be able to have a happy society and Happy periods,” says Vinay with a smile.`
Know more about Happy Periods here. you can also contact Vinay Kumar on 9717215950.
In collaboration with Aakar Innovations, The Better India is setting up a sanitary pad manufacturing unit in Ajmer, Rajasthan, that will not only produce eco-friendly or biodegradable sanitary pads, but will also employ women from rural communities around the area.
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Deemed India’s first and the world’s second differently abled DJ to open a music festival, 26-year-old Varun Khullar, popularly known as DJ Aamish Underground, is a source of inspiration to the millennials who leave no stone unturned to chase their dreams.
Born in a Delhi family of engineers, this young music producer and disc jockey is breaking barriers and establishing himself in the world of music.
Speaking to The Better India, Varun says, “Despite the familial pressure, I always wanted to become a DJ since childhood. But I don’t really blame my family for not understanding my dreams at the start because they wanted me to complete my Masters. In the society we live in, people are so scared of experimenting that anything that doesn’t conform to the conventional standards is looked down upon.”
But Varun with his achievements seems to have upturned conventional norms on its head. He truly believes that anybody can achieve anything they aim for if they are given the right opportunities and right time and space to work towards it. Rome wasn’t built in a day after all.
“I love doing deejaying and music production. And I know I will never ever get bored of it. It is the burning passion that I want to keep following lifelong,” he shares.
Varun graduated in Foreign trade and international practices from Delhi University and worked as a marketing executive. He also pursued his Masters in Mass Communication and Journalism from Amity.
He was only a usual college-going student when he met with a fatal road accident in Manali that rendered him wheelchair-bound in 2014.
Bedridden for over three years, Varun did not let his disability come in the way of pursuing his passion. A self-starter and learner, he started learning music production on his own for the first two and half years, watching YouTube videos, reading books by different artists, watching music channels etc.
He is dedicatedly working towards his own music which will be out soon.
The only professional training he took on his journey to mastering music production was a distant online course from Point Blank Music School in London and later ILM Academy in Gurgaon.
“Despite having learnt most of my music production on my own, I joined these courses to see if all my learnings were on the right track and would get me certified music producer/DJ work… The faculty at these institutes are experts and I knew they would be able to guide me better,” he says.
But the road to success was full of rejection, unshed tears and stigma, that Varun bravely fought.
“I cannot say that I was totally deterrent from the start. I was emotionally drained and it was a downright chaos. I was only a usual college going student and suddenly my life had come to this abrupt halt. I could suddenly see four people trying to lift me off my bed and get me on to a wheelchair. The sinking feeling kept bogging me down for several days and months,” he confesses.
While his family did not want to the doctors to disclose that there was a possibility that he could never walk, the doctors decided to tell him the truth. “I was just out of the ICU and the doctor was checking my reports, when I asked him, ‘Why can’t I move my leg?’ And he told me, ‘You will never be able to walk.’”
Torn completely, he decided to put on a brave face for his mother who was still reeling from the grief of having lost her husband recently and thinking about her son being wheelchair bound for life.
“I did not want to put my emotions out. I smiled and said okay. But I was totally shattered. I continue my physiotherapy till date and it has greatly helped,” says Varun.
Despite having cried within the privacy of his bedroom for months, Varun never stopped working hard.
He says he doesn’t want people to look at him and other persons with a disability differently.
“Yes, I saw a lot of difficulties to reach where I am. But that was because I took the effort to convince people that I was talented enough and wanted to excel at what I do. My wheelchair is not my excuse. I am just a DJ doing my job, being a DJ in a wheelchair hardly makes a difference.”
He also voices his strong views about a harsh reality that is staring at us in the face. “It aches me to say that most people in our country think that a wheelchair-bound person is of no use.It also reflects the fact that not many success stories of wheelchair-bound personalities are brought to the forefront.”
While he listens to a host of deep house music artists he believes the inspiration for his music comes from within. While he was bedridden, he would surf the internet regularly to see if there was a DJ on a wheelchair.
It was at the time that he came across the story of Sir Paul Johnson from Chicago, whose spinal cord injury after a shooting, rendered him wheelchair-bound. He is the first and only DJ in the world who has been deejaying on a wheelchair for the last 25 years.
“I got the opportunity to talk to him on Facebook messenger, when I was going through a rough phase, when I was constantly getting rejected from all places I applied seeking music work. When I would send the same demos to tutors at Point Blank and ILM, they would say it was good but the market wouldn’t give me any work. Sir Paul Johnson told me how nobody in the United States, judges you for being in a wheelchair, they look at your talent to give you work.”
The building he resided in was also not accessible but as per the United States’ constitutional rules, they got a separate wheelchair friendly lift for differently abled residents.
“He told me to not stop because my work was good and I would find somebody who would understand my calibre. And this person for me was Mr Keshav Suri,” he says.
Varun has been working as a resident DJ for Kitty Su, ranked the 87th best club in the world, owned by Lalit Group of Hotels and Keshav Suri.
“Had Keshav Suri Sir not accepted me as a DJ on a wheelchair, I would have never reached this point in my career. Of course, all the hard work was mine but had he given me the same answer that most others did and rejected me by just looking at me in a wheelchair, I wouldn’t have done what I have managed. He told me, ‘Different is no different.’”
It was Varun’s work that impressed them. While he met plenty of people trying to piggyback with sympathetic partnerships to gain out of it, he refused to take it up, because he wanted to get work based on his merit alone.
While the title of the country’s first differently abled DJ makes him happy and proud, he doesn’t want a celebrity status. “ I just want to give a shout out to other people with disability and tell them to not let the fear of ostracisation or rejection, make them hide in their homes. I am doing what I love to do. So, you start doing what you love.”
Discussing the challenges that persons on wheelchair face in the city, he draws attention to several instances he has faced. “In Delhi, Kitty Su is the only club in a five star that was built wheelchair friendly almost six years back. Most restaurants, movie halls, clubs etc in Delhi are inaccessible for people on a wheelchair when our very Constitution states that properties need to be disabled and wheelchair-friendly.”
There were several instances when his differently-abled friends were asked to go back because properties were inaccessible.
Speaking to persons with disability, he says, “If you think any space is not accessible, don’t turn back. Question it, because it is your right. If people come out together and raise their voice for inclusion, I am sure, authorities and people will be forced to take the issue of accessible public spaces and private properties seriously.”
Varun also drives a hand-customised car on his own. Even that comes with its share of challenges. “I remember when my car broke down once and I did not have another person accompanying me to explain the traffic police, that I am in a wheelchair, it was a humongous task.”
While people laughed at the possibility of a person in a wheelchair being able to drive, it brought to light their ignorance too.
“People need to be more aware and educate themselves. They need to look at persons with disability just like themselves. Only when you stop categorising us as ‘others,’and accept us for who we are, will they be motivated to make something out of their lives.”
His message to people is to never stop dreaming and certain not let her disability define them.
“If you want to achieve anything, NOTHING COMES EASY. I am not an expert, even I am learning. You only learn from your mistakes. It will take time, took me 4 years. Never forget, dreams are all we’re made of.”
Varun will be opening the multi-genre music festival Time Out 72, which industry biggies like American singer Jason Derulo and Dutch DJ Martin Garrix, performing in Goa.
Inclusivity at the workplace is very topical. Be it about gender, ethnic and religious minorities or people with disabilities – the public must be open and accepting of diversity.
One such effort to bring conversations about disabled people into the mainstream is the India Inclusion Summit. It helps increase awareness and drive action for workplaces, schools, colleges and policy-making bodies to be more open to such people.
The aim is to sensitise the Indian public on issues related to people with IDD (intellectual developmental disability) and physical disabilities through pop-culture, sports, books and media, and to do so it leverages the support of well-known personalities to further the cause of an inclusive society.
The group identifies roles which offices could employ to support people with disabilities. It shares innovations and success stories of such individuals. And while they educate the people on the discourse for inclusion, it also provides a platform for unsung heroes.
Every year, as a part of its merchandise, the group is distributing T-shirts that are very dear to them because people with autism have designed these pieces of clothing. Using block print techniques, young autistic adults have designed delicate designs against plain white t-shirts.
Who helps the autistic adults do such work?
The Nav Prabhuthi Trust. Started in 2013 by Ms Jayshree Ramesh, a few parents of special children and a couple of Rotarians, the trust identified a gaping hole in the vocational training landscape for people with disabilities.
It started with the intent to provide vocational skills training to young adolescents with autism to make them into financially independent individuals.
Later, the trust realised that young adults need a space to learn such skills. The whole purpose of Nav Prabhuti is to make autistic adults productive and help them contribute to the society meaningfully.
Autistic kids and adults are good at following instructions, especially those they can see said Jayashree in a report to YourStory. It should have very clearly defined spaces and no-ambiguity. Nav Prabhuti teachers train them extensively, and over a period they become increasingly more independent.
The students are provided vocational training in hand block printing, data entry, stitching, and handmade jewellery among other skills taught.
The importance of personal hygiene, money and time management are also taught to them.
Individual training sessions are planned based on the skill of each beneficiary, says Usha, an employee of Nav Prabhuti.
Products such as hand block printed bags, sarees, bedsheets, stoles, t-shirts, greeting cards, hand I painted diyas made and sold too.
India Inclusion Summit has been an avenue to celebrate the uniqueness of every individual. Their tagline reaffirms their belief – everyone is good at something.
Also, when you buy the t-shirts, proceeds from the sale go towards supporting the Nav Prabhuti Trust as well.
Every individual’s identity is his/her quirks, abilities and disabilities. Inclusion is all about celebrating individuals for being themselves.
