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Dear States, End Your Cruel Apathy And Give The Disabled Their Legal Due!

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When Parliament enacted the Rights of Persons with Disabilities Bill, 2016, it was seen as a landmark piece of legislation which established a paradigm shift in how the Indian polity understood and thought about disabilities.

From a mere concern for social welfare, it became an issue of human rights, and our lawmakers passed appropriate legislation to address this lacuna in our laws.

“The Act lays stress on non-discrimination, full and effective participation and inclusion in society, respect for difference and acceptance of disabilities as part of human diversity and humanity, equality of opportunity, accessibility, equality between men and women, respect for the evolving capacities of children with disabilities, and respect for the right of children with disabilities to preserve their identities,” state Choudhary Laxmi Narayan and Thomas John in a paper published for the Indian Journal of Psychiatry.

It encapsulates the spirit of Article 14 of our Constitution, which guarantees all citizens the right to equality, which in this case translates into equal opportunity.

Even though it’s been nearly a year and a half since Parliament enacted the Disabilities Act, certain states are yet to notify the rules. Without notifying the rules, those who stand to benefit from this piece of legislation cannot do so.

For representational purposes only (Source: Flickr)
For representational purposes only (Source: Flickr)

According to the Indian Express, the Lieutenant Governor and the Delhi government are yet to notify the rules under the act. A minister in the Delhi government said that it would take another two months before the rules are notified under the act.

“It will take a month for people to give suggestions and objections. Very few states have notified the rules; we are looking at doing it in two months,” said the minister in question.

Earlier this month, the Madras High Court pulled up the Tamil Nadu government for the same and ordered it to publish and notify rules within two months.

“The State Government may, subject to the condition of previous publication, by notification, make rules for carrying out the provisions of this Act, not later than six months from the date of commencement of this Act,” reads Section 101 of the Rights of Persons with Disabilities Act, 2016.

In other words, once Parliament passes a law, it’s up to States to establish rules and notify it.

Despite its concerns, the Disabilities Act 2016 is a critical piece of legislation, which increased the types of recognised disabilities from the existing 7 to 21—including conditions such as sickle cell diseases, mental illness, speech and language disability, thalassemia, haemophilia and others.

Thalassemia has also been recognised as a disability. 

Until the respective State governments notify the rules, government institutions like district hospitals cannot distribute disability certificates to those who fall under the new set of disabilities recognised by the Disabilities Act, 2016.

To the uninitiated, a person with any benchmark disability (or those with at least 40% of any of the recognised disability) is eligible for a disability certificate which allows him/her to avail of benefits or concessions offered under available State schemes.

This is a problem that isn’t merely limited to Disabilities Act. In fact, according to a study by Vidhi Centre for Legal Policy, a New Delhi-based think-tank working on legal reform, it takes an average of more than 8.5 months for a law passed by Parliament to come into force.

Read also: How a Woman Braved Disability, Poverty & Body Shaming to Become a Teacher

The study analysed over 44 laws that parliament had enacted from 2006 to 2015. When a law is passed by Parliament, the next step is receiving the assent of the sitting President. What the study measured was the time lag between receiving presidential assent and the law coming into force.

Once a law receives presidential assent, there are two further steps. “First, the government must bring it into force through notification in the Official Gazette. The second step – which is not essential but integral to the practical working of the law – is the framing of rules. Most laws require rules in accordance with the law – for its implementation – approved by the legislature before they are presented to each house of Parliament,” says this report by IndiaSpend.

Ideally, the rules of the said piece of legislation must be brought before the House. However, as certain lawmakers have complained, on most occasions these rules are never brought up for discussion. When one reads a news report of a law being passed by Parliament, the general expectation is that this is the new law of the land.

For representational purposes only (Source: Wikimedia Commons)
For representational purposes only (Source: Wikimedia Commons)

In the case of the Disabilities Act, certain citizens who were ready to avail of their rights under the new law have to wait for 1.5 years to avail of its benefits.

This is patently cruel. In fact, the Supreme Court made a note of this unhealthy practice when it slammed the Centre for its inability to bring the Juvenile Justice Act 2015 into force.

Read also: Meet Jitendra Mane, Who Teaches Rural Children Despite His Crippling Disability

“I would imagine that before you come out with the Act, you have to have the rules in place,” Justice Lokur said, according to The Hindu. “Such a view would apply to any law. You have got to get everything in place.” One hopes that the respective state governments pay heed to his words and ensure that those with disabilities receive the benefits and concessions they are entitled to.

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The Indian Air Force Is Organising a Special Paralympics for the Children of Air Warriors!

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The Indian Air Force is committed to boosting the confidence of differently abled children and is organising a Paralympics event for them in New Delhi. The Western Air Command in the capital will be the venue, and will host a multitude of events ranging from track & field games, to bocce, table tennis, shot put, badminton, roller skating, archery, and football.

According to Devika Harikumar, the President of the WAC Air Force Wives Welfare Association, there is a big difference, in the way differently abled children are treated in India and abroad, She adds that these children require specialised opportunities and infrastructure, something we still do not provide.

The Indian Air Force is organising a Paralympics event for children of air warriors, hoping it will groom them to take up sports.Representative image only. Image Courtesy: Wikimedia Commons.
The Indian Air Force is organising a Paralympics event for children of air warriors, hoping it will groom them to take up sports.Representative image only. Image Courtesy: Wikimedia Commons.

The goal of the event is to foster a feeling of social well-being among the children, groom and train them to take care of their daily needs, assist in developing their motor skills, and, regarding the bigger picture—train them to participate in national and international level paralympic games. Maybe, one day they can represent India too, as these athletes have.

The IAF wants to ensure that the event is a success, and according to IAF officers, once the first event is held at the command level, subsequent ones could be held throughout the country, for children from all across the service.


You may also like:- Meet Blind Athlete Ankur Dhama, One of India’s Foremost Medal Hopes at the Rio Paralympics


Harikumar is optimistic and said she would leave no stone unturned in making sure the event becomes a regular feature. She wishes that the children get motivated, and take sports seriously, as it will help in their personal development, and bring them name and fame in the national and international arena.

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We All Need Our Daily Dose of News. What About the Differently-Abled?

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Formats of news across various mediums are seldom compatible with the languages and strengths of disabled people.

For such differently-abled people, browsing through news and daily happenings can be especially challenging, and might make them feel disengaged from the world.

Newz Hook, a news website catering to the differently-abled, is here to put an end to such troubles.

Started by Shilpi Kapoor, Newz Hook is a venture that brings technology to the aid of the differently abled, facilitating them with a daily dose of news and encouragement.

A recording session at Newz Hook. Courtesy: Ramya Venkitesh

It is a venture of Barrier Break– a company working towards innovation and inclusivity of the differently-abled.

Ramya Venkitesh, from Newz Hook, told The Better India, “News is a way for people to get access to the happenings in the world. For people with disabilities access to news has been challenging. A person who is blind or has low vision finds it difficult to read the printed newspaper or get access to news online. For people with hearing impairment sign language is their first language. Similarly, for many people, English is the second language, and understanding news becomes difficult for them.”

So, Newz hook decided to shake the format of mainstream media and evolve it to cater to people with disabilities. They use formats tailored for different kinds of audiences. For those with hearing impairment, Newz Hook, the winner of NCPEDP-MphasiS Universal Design Awards, and the Indian ISV Awards in 2016, uses the Indian sign language while for those with visual impairments, they use VoiceOver screen readers. They even have high contrast screens or different text sizes for an audience with semi-blindness

“Bechaara, Suffering, Dependent- that’s how people usually label the 100 million disabled people in India,” Ramya told TBI. “But Shilpi Kapoor believes that technology can be the game changer for inclusion. She is motivated to ensure that as Barrier Break scales, it impacts the lives of the disabled people in India, and globally.”

The website has also won the Ascent Awards and Zero Project Award in 2017 and 2018 respectively.

What’s more, Newz Hook wants to work as a platform to create a community of differently- abled people who unite as a force of strength. They aim to highlight stories of people across the world who have overcome their disabilities to reach the skies!


You may also like: Differently-Abled Art is Going to Make Theatre Visits All the More Special!


“We highlight stories and information that will let people see people with disabilities as equal, as able, as independent and with empathy!” Ramya told TBI. “We disseminate information to assist people with disabilities, and their circle of influence become aware of what’s happening in the world.”

The website receives about 20,000 users daily, while their app, also called Newz Hook, has over 10,000 subscribers. It is certainly inspiring to see the inclusive nature of the website that brings motivating stories to people who need it, and in the way they need it.

Featured image sources: YouTube/ NewzHook/ YouTube.

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Sound of Success: This Man is Empowering Thousands of Hearing Impaired!

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Sumit Singh Gandhi would travel in small vans throughout his summer internship in Jalandhar. Every day, he would sit alongside hearing impaired children, as he journeyed to his workplace. Being someone who loved to strike up conversations with people, he was dismayed about being unable to communicate with the kids, because he did not know sign language.

Undeterred, he would type on his Blackberry to communicate with them—and it worked! It was this experience that made him wonder, why not use technology to help the hearing impaired?

He nurtured this thought for the next two years. Finally, in 2012 he started Sounds of Silence, one of the first technology-based NGOs with the aim of empowering hearing impaired individuals to help them overcome the communication barrier, and provide a new way to interact with the world.

The pilot project, which started in Delhi, involved collecting old mobile phones with QWERTY keypads, and distributing them among deaf children so that they could easily communicate with people who did not understand sign language.

“What we soon realised was that there were gaps in the education sector. Some of the teachers didn’t know proper English, and there was no set curriculum so that the children could learn. This was what inspired SOS 1.0,” says Sumit speaking to The Better India.

The organisation went to schools for the hearing impaired around Mumbai and developed a curriculum where they taught the children proper grammar and conversational English, through different mediums, such as laptops, mobiles, and projectors.

It was a method which made the students exceedingly comfortable and was easy for them to grasp.

“We have tie-ups with different schools around Mumbai and Pune, and we train students from an early stage. Today, thousands of children across Mumbai, Pune, and Delhi have been trained through our program,” he says.

Even while they were helping children, Sumit realised that other people were facing difficulties finding employment, because of their hearing impairment. This was when he launched SOS 2.0.

Here, people who are no longer in school, are trained in various digital marketing courses, and other skills such as SEO, SMS marketing, e-mail marketing and more, to help them find stable jobs in the market.

The organisation is especially proud of Ubedullah Khan, a 21-year-old whom they trained in digital marketing. Today, he is a social media whiz and the go-to man when SOS faces a social media related problem. His own Instagram page has over 35,000 followers!

“We digitally empower them so as to act as a digital support to a partner firm’s online activities. They are skilled with various computer functions and other software. In fact, they have also been successfully supporting various companies,” explains Sumit.

According to him, SOS has taken up digital marketing projects for several SME’s, and many of them are highly capable of dealing with technology.

Not only have they been trained, but they have also been NIIT certified. In a recent project, employees were involved in CRM (Consumer Relation Management), where they formed chat support and managed end to end relations for small companies.

However, SOS has had its own battles to overcome.


You may also like: Why Shouldn’t the Deaf Learn Martial Arts? This Instructor Has Proved They Can!


“Alone we can initiate a change, together we can bring a revolution. I strongly believe that a person is never born a leader but can be trained to be one. At Sounds Of Silence we train our fellows to be leaders and create a sustainable impact. We want to build a community that doesn’t want to settle for anything less than what they deserve. Something that, unlike charity is sustainable and empowers them to believe in their capabilities to do more than exist”, he adds.

The organisation itself has received several prestigious awards, including the Helen Keller Award and the Social Entrepreneur of the Year Award in 2015.

Sumit has also been invited to speak at a TEDx event at IIM Kolkata. You can watch an excerpt of one of his speeches below:

He knows that it isn’t easy for the hearing impaired to find good jobs in today’s increasingly competitive job market, but he believes that it is possible through the efforts of his organisation.

In the future, SOS hopes to become a self-sustaining business with over 100 employees and provide support as a chat system to other companies!

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It’s Time Cinema Started Conversations About Disabilities, Visible and Invisible

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Why are movies only made for those who can see and hear them? Can we not make movies for the visually impaired or the hearing impaired? Also, why do we shy away from acknowledging that people with disabilities also have sexual needs?

Point of View (POV), a Mumbai-based feminist non-profit organisation, has been working with marginalised women to break the silence on various such issues. They have been organising a series of screenings of short films, feature films, documentaries and having discussions based on disability.

Conversations about relationships, intimacy and rediscovering oneself form the core of what these movies depict.

At the screening

We, at the Better India, caught up with two women who are helping drive this initiative – Nidhi Goyal who heads the Sexuality and Disability Program at POV and Srinidhi Raghavan, Senior Researcher and Trainer at POV. We spoke to them about the movies that were screened, the discussions that stemmed from that and the role of POV in putting this all together.

When asked why they chose the medium of movies to put their point across, Nidhi said, “We wanted to reach women who don’t speak English, those who do not necessarily have access to research papers and the information that internet provides.

The idea of such initiatives is to extend the reach to the grassroots and start conversations. To do that we conduct offline workshops and showcase movies at all these festivals to ensure we reach more people.”

One aspect of making theatres accessible to the disabled is to address the physical accessibility. However, the kinds of disability that exist are so varying that we need to provide and find solutions to address those as well.

“Do we have captioning (for the hearing impaired) and audio descriptions (for the visually impaired)?” asks Srinidhi. In these screenings, one of the things that POV wanted to achieve was inclusiveness – a platform that recognises all kinds of disabilities.

When asked about how mainstream cinema addresses disability and sexuality, Nidhi says that with the exclusion of Margarita with a Straw, there are hardly any movies made on the topic.

A still from the movie

“The reason we need to have these discussions is to break free of the stereotyping that happens. Cinema does not have to think about it as a disability story. It is, after all, a story of love. That mindset needs to change.”

Unrest

Jennifer Brea’s Unrest was one of the movie that was screened at the festival, in which the protagonist suffers from Chronic Fatigue Syndrome, a disability which often either gets misdiagnosed or completely pushed under the carpet as ‘being in the mind’.

Srinidhi speaks of how powerful the movie is and says, “This is one of the rare movies where the director (Jennifer) is disabled herself and decided to turn the camera on herself and film her own journey through the life she was leading.”

“For many in the audience, it was heart-breaking and life-affirming at the same time to watch what they go through on a daily basis on screen.”

Director Jennifer Brea and her husband Omar Wasow
Photo Source

It has certainly changed the narrative of this condition (Chronic Fatigue Syndrome), says Srinidhi.

While people all over recognise disabilities like hearing and visual impairment, invisible disabilities like chronic fatigue syndrome and specific sleep disorders have unique challenges in that they cannot be seen and hence become difficult to explain.

Movies and screenings of this nature will help people understand the range of such conditions.

If you wish to learn more about the work that POV does or would like to be a part of these conversations, do visit their website here.

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Amazing Mother Creates a Unique Place for Her Down Syndrome Son’s Talents!

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The dictionary definition of a ceramist is one who makes ‘works of art’. This is certainly an apt description for Shaurya, a 30-year-old ceramist who runs an art studio in Gurugram along with his mother, Nina Mehrotra.

The special thing about Shaurya is that he has Down Syndrome.

Working with clay to make these beautiful works requires patience, dedication, and vast amounts of creativity. All of which Shauraya has.

Shaurya’s work

Named Banana Studio, this place is Shaurya’s little heaven. Having travelled across South Africa, Thailand, and China, Shaurya has been trained by various artists and has got some wonderful exposure thanks to all the travelling.

We, at The Better India, spoke to Nina, Shaurya’s mother about raising a child with Down Syndrome, travelling the world discovering new things, and starting Banana Studio, a place where her son can express himself.

“Shaurya is my only son, and ever since he was born, we kept moving from one place to another owing to the transferable job that my husband had. Shaurya has been in and out of various schools. We realised after a while that academics was not for him.”

Shaurya at Banana Studio

“He was about 19 when we figured out that his interest lay in art. We were in South Africa and his interest in clay was something that was coming through very strongly. It was at a residential place for special children that we met Brenda, a professional potter.”

Brenda took Shaurya under her wings and trained him for the three years that we were there, says Nina. His interest in this art form only grew from there.

His happy place

“The nice part about all the travels was that we managed to find little pockets where Shaurya learnt various styles and techniques. Whether it was in Thailand or South Africa, our experience was always good,” she says.

It was in Thailand that Nina also started learning the art so that she could accompany Shaurya and work alongside him.

Shaurya and Nina

In 2013, they moved back to India, and that was when Banana Studio came into being. In building the studio, Nina wanted to have a place where families could just go and chill together.

Shaurya has now started exhibiting his work at various avenues in and around Delhi/NCR. Nina says, “People have started noticing his work and commenting on the distinct characteristic that his work has.”

“It genuinely makes me a very proud mother. Until then I always viewed his pieces as his voice and expression but having people like his work has changed that for me.”

Speaking about how children with special needs are treated in India and other countries she says, “South Africa has such wonderful places where children with special needs can stay and blossom.”

Speaking about Thailand, she says, “Thailand was great as well. It is such a beautiful place for children with special needs. People are so accepting there. There is so much difference between India and Thailand in this respect.”

In India, people already have so many problems of their own that special needs are low on the ladder. So here people have to make an effort to understand these children, she says.

“In India, we have to shout to the world that these guys can do something,” says Nina.

For Nina, Shuarya was her only child, and she focussed all her energy on ensuring that she helped him find a place for himself. Shaurya is a happy person, who enjoys the company of people, and in creating Banana Studio, Nina wanted to provide him with his space.

A few points that Nina mentions we must start practising:

1. Have an open mind

Children with special needs are just like you and me. We need to stop labelling and start accepting.

2. Be empathetic

A little kindness will always take you a long way. Take a step back and look at what lies in front of you.

3. Don’t be fearful

Whether you are a parent of a special needs child or know one, don’t be afraid of them. There might be good days and bad days, learn to embrace them both.

4. Be there for your kid

As a parent ensure that you are your child’s biggest support. Once they find that in you there is nothing that can stop them from achieving what they wish to.

Nina also mentions how as a family they have always taken Shaurya out to all social gatherings.

“My husband and I have always taken Shaurya everywhere, whether the movies or a social gathering. That has instilled in Shaurya the confidence to face people,” she says.

As we end our conversation, Nina says she takes each day as it comes and only wants happiness for Shaurya. “Sometimes in looking at the larger picture we forget to appreciate the present.”

If you are in Delhi/NCR and wish to visit Banana Studio, you could check their Facebook page for all details.

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Meet The Indian Engineers Who Helped Stephen Hawking Get His Voice Back

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“However difficult life may seem, there is always something you can do and succeed at.” – Stephen Hawking

One of science’s biggest celebrities since Albert Einstein, renown cosmologist Stephen Hawking passed away at the age of 76 in the early hours of Wednesday. The author of the best-selling book A Brief History of Time was born on January 9, 1942 (the 300th death anniversary of Galileo) and died on Wednesday (the 139th birthday of Einstein).

In India, fans and well-wishers of the pioneering physicist took to social media to pay their heartfelt tributes to one of the greatest minds of our time. However, few of them know that it was a technology developed by Indian engineers that helped Professor Hawking (who lost his voice in 1985 after a tracheotomy) talk again.

Here’s the story of how the efforts of two Indians — Arun Mehta and Vickram Crishna — helped Stephen Hawking get his voice back.

Photo Source: Vickram Crishna (left) and Arun Mehta (right)

In January 2001, Stephen Hawking arrived in India for the first time for a 16-day long tour he would later describe as “magnificent”.

In the first leg of the tour in Mumbai, Hawking attended an international physics seminar at the Tata Institute of Fundamental Research (TIFR), delivered the Albert Einstein Memorial Lecture (titled ‘Predicting the Future: From Astrology to Black Holes’) and celebrated his 59th birthday on January 8, 2001 at the Oberoi Towers hotel where he stayed.

Following this, Hawking — who had been diagnosed with Lou Gehrig’s disease (better known as ALS) when he was just 21 — travelled around Mumbai in a specially redesigned vehicle that could accommodate his wheelchair.

It was during this time that his aides began reaching out to several people and organisations who could help write a software program that would help Hawking communicate through his computerised wheelchair (he had been facing problems with the software he was using at the time).

Photo Source

The men who decided to take up this challenge were Arun Mehta and Vickram Crishna, the latter of whom had met Hawking in Mumbai.

In a video by The Scroll, Crishna recalled his meeting with Hawking, saying that the revered physicist did not turn out to be a forbidding figure at all. He added that Hawking was just a warm, fun-loving guy who loved cracking jokes and that he had a serious problem that needed serious attention.

This meeting left Crishna convinced about the dire need to develop a better tech-human interface that would make it easier for him to express himself. Ably partnered by Mehta (a teacher, software engineer and dedicated disability rights activist), he began using his technical training to do just this.

And their efforts bore fruit when they were able to create a software that would fulfil the writing and speaking needs of people with severe motor and speech disabilities. Called Elocutor, the software works on a prediction model and attempts to anticipate what a user is going to type next, and learns from what he or she had already typed in the past.

As such, Elocutor made it possible for Professor Hawking to type and speak using a single button!

Photo Source

But this amazing feat was not the end of the talented duo’s journey of working for people with disabilities.

“While developing that software we realised the importance of technology in the lives of people with disabilities, especially those who have a tough time communicating,” Mehta says. “So we started doing more work in this area, only to realise that working constantly in this field did not make commercial sense. It is something more suited for an NGO than for a software company.”

In 2009, Arun and his partner Vickram Crishna founded BAPSI (Bidirectional Access Promotion Society), an NGO that aims to make technology solutions accessible and affordable for the “information poorest”, people who have limited access to information because of their disability and because information is not presented in a user-friendly way.

Among the applications BAPSI has made to help deaf-blind people communicate are PocketSMS (an SMS app that uses vibrations as in Morse code to read text), Narangi (a slate for deaf and blind children, where once the sketcher traces his or her drawing, it vibrates) and SKID (a web-based software programme for kids with cognitive disabilities such autism, dyslexia, and cerebral palsy).

Photo Source

Aside from his work with BAPSI, Mehta has also taught computer programming skills to visually-impaired students in New Delhi, providing them with the skills required to generate audio-visual content for the blind in the future. Realising that a lot more need to be done to address this issue, the 64-year-old IIT Delhi alumnus plans to continue working in this direction.

“The talents of so many people with disabilities are lost everyday just because they are unable to receive an education, unable to communicate and get information. We have to help them recognise their potential,” he says.

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On the Brink of Death, This Woman’s Life Was Saved by a Couple 1000 Km Away!

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26-year-old Rachana (name changed to protect identity) from Rajasthan, was going through a terrible ordeal for years. On 13th March 2018, she decided to put an end to all the suffering, and called Anand Service Society—a rehabilitation centre in Indore—for help, because she could not handle the stress anymore.

Since the time Rachana was an innocent 10-year-old girl, her father had been molesting her. When she became an adult and got married, Rachana believed that she was leaving her traumatic memories behind, and was hopeful that her married life would give her the comfort she so desperately needed. Unfortunately, that did not happen.

When she finally called the Anand Service society, all she could say was that if she did not get immediate help, she would commit suicide. Monica Purohit, who works as a rehabilitation social worker with the society spoke to The Better India about the incident which could have cost Rachana her life.

“When Rachana first called us on 13th March, all she told us was that something terrible is happening to her, and she needs immediate help. On 14th, she told us how her father has been abusing her and how even her marriage was not exactly an escape from that life,” Monica said. “She kept repeating that she would commit suicide if she did not get any help, but we counselled her for hours.”

However, this was no ordinary counselling session. Monica and her husband, Gyanendra Purohit, who is a social activist and lawyer, counselled her using sign language because Rachana is hearing impaired.

Rachana, who wanted to commit suicide, was counselled over the days on video call. Courtesy: Monica Purohit

On the night of 15th March, things got even more serious as Rachana was crying hysterically on the video call and signalling that no one would help her. As she conveyed this to Monica, she started to tie a noose.

Monica was alarmed and wasted no time in calling up the local police in Rajasthan and telling them the location of this poor girl who was on the cusp of her life.

Unfortunately, the police did not take Monica seriously and waved off her request to interfere with Rachana’s decision. Then, Monica and Gyanendra used all the resources at their disposal—Human rights activists, media and other friends—to get help for Rachana.

“We distributed her photos, number and location, so more and more people could pressurise the police into taking action. Finally, it worked.

The couple managed to pull all strings for Rachana. Courtesy: Monica Purohit

The police ran down to Rachana’s place and broke down her door just as she was tying the noose around her neck. How do we know this? Gyanendra and I took turns to keep talking to Rachana. We desperately wanted to save the life of this poor, innocent girl who had been suffering throughout her life,” Monica told TBI.

Rachana was finally rescued, and according to the Times of India, she has been sent to a girls’ shelter where she is trying to find a competent interpreter to file her complaint with the police.


You may also like: How 2 Alert Hyderabad Cops Saved a 22-Year-Old Girl From Suicide


Even as Rachana’s life was rescued from the noose, her worries have only just begun. She now has to take up her complaint with the police, who initially refused to help her, and live a life that will be nothing short of a challenge.

In all this chaos, it is essential to acknowledge the kind of help provided by Monica and Gyanendra. The duo went above and beyond of what they were required to do and played a fundamental role in saving an innocent life.

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Hiccup of Hickhi: a 27-Year-Old Reveals What Tourette Syndrome Is Truly Like!

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Prateek Singh

Meet Prateek Singh, a 27-year-old, who resides in Jabalpur. He is currently pursuing his Masters in Business Administration and also helps out with his family business.

Looking at his picture would you think he has a disability?

Sometimes disabilities aren’t visible, and yet they exist and are real. Tourette syndrome is one such disability. Although not much is known about it, living with Tourette’s can be an extremely exhausting and draining process.

Tourette syndrome (also known as (TS or simply Tourette’s) is characterised by uncontrollable repetitive movements or unwanted sounds (tics), such as repeatedly blinking the eyes, shrugging shoulders or blurting out offensive words.

Please note that these are uncontrollable and involuntary.

We, at The Better India, spoke to Prateek to understand what this means and what support he has to deal with it.

“I was in Class 1 when my tics started showing up. People around me, including my family, ignored it saying it will get better with time. As a young child I remember I would blink many times over in a span of a few seconds and was often teased about it,” he recounts.

Prateek talks about how these tics kept changing through his years in school. It was never restricted to just one thing. While some people have very visible tics, for some others it remains subtle.

Prateek Singh

The tics continued until Prateek was in Class 10. He says, “I remember going online to try and find out what I had, and that was when I realised that what I have is something real. It was completely self-diagnosed at that time.”

Explaining how these tics work, Prateek says that while for him it started with the eyes, the twitch then moved to his shoulder—it would involuntarily twitch, and he experienced a loss of control. “Because of the shoulder twitch, I am also unable to drive. I also, unfortunately, got into an accident once.”

Prateek moved to Mumbai, and it was his friend who took him to see a doctor there. “That was the first time I saw a doctor for this and he was able to diagnose the issue. That was also the first time I heard the term ‘Tourette Syndrome.’ I was prescribed medicines to manage my tics, which I took for a while.”

Speaking about how it is important to get good support, he says, “My family, unfortunately, was least supportive. My parents kept nagging me to ‘change’ myself.”

“Despite making my mother watch many documentaries about it, all she said was it’s just a bad habit, so change it. My sister was slightly more supportive,” he says.

Prateek with his mother

Luckily for Prateek, his friends have been a great support system. “On the spectrum of Tourette syndrome, I am somewhere in between. I have seen people with very exhausting physical tics. It makes it very difficult even to carry out daily chores,” he says.

Speaking about how people view this disability he says, “In India, everyone is so concerned about what the other person is doing that they will not hesitate before asking you terribly invasive and intrusive questions. Having travelled abroad, I can make a comparison and say that in other countries people don’t even bother or give you a second glance.”

There have been various instances when complete strangers have said hurtful things to Prateek. He speaks about how when he works out in the gym, many people observe his shoulder twitching and come up and ask him if he’s feeling cold.

While he lets some of these comments pass, there are some which hurt.

Prateek

Prateek is hopeful that with the release of ‘Hichki,’ a movie which stars Rani Mukherjee, more people will get to know about this syndrome and be slightly more mindful while dealing with people who suffer from it.

Since there is hardly any information available in the public domain, Prateek started a support group on Facebook called Tourette Syndrome—INDIA Support. For more information do check out the page here.

(Edited by Gayatri Mishra)


You May Also Like: Hichki is Highlighting an Important Disability That We Should All Be Aware Of


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This Visually-Impaired Student Clinched 13 Gold Medals & a Rhodes Scholarship!

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Popular disability activist Nick Vujicic once said, “When you feel like giving up on your dream force yourself to work hard another day. Another week, a year. You’ll be amazed what happens when you don’t give up.”

And we can add Rahul Bajaj’s story as a culmination of this very quote.

A partial visually-impaired student of Law (LLB) at Dr Ambedkar College, Deekshabhoomi clinched almost 20 awards, including 13 gold medals, at the 105th convocation of Rashtrasant Tukadoji Maharaj Nagpur University (RTMNU) on Saturday.

To add a massive icing to that medal cake, Rahul Bajaj is perhaps the first disabled student from India to have been chosen for the Rhodes scholarship to pursue a Bachelor of Civil Law and M.Phil from the esteemed Oxford University.

Rahul Bajaj Rhodes Scholarship visually-impaired
Source: Facebook

Rahul, who stood first beating students of all streams in the whole of RTMNU, was honoured with the medals by Tamil Nadu Governor Banwarilal Purohit at a ceremony.

Speaking to the Press Trust of India (PTI) he expressed how these awards were a recognition of the effort he had put in over five years at his course.

When asked what motivated him to pursue a career in law, Bajaj says it was a combination of more than three to four factors. Apart from his interest in social studies and English which are considered to be central tools for a lawyer, Rahul says he has a knack for arguments, but constructively. And he possesses the ability to put forward his view in a persuasive way.

Emphasising another very important factor that influenced his decision, he says, “As a person with a disability, I felt law to be more accessible as skills needed for it is mental and intellectual rather than physical or visual,” he explained.

He also expresses how his internships with SC and HC judges not only helped him step out of his comfort zone but also inculcate skills to compete at the national level.

The Rhodes scholarship for Bajaj is more than a mere achievement he says. Because the award is given to students who, in addition to academic excellence, also have a holistic and well-rounded profile.


Read more: Lockers in Schools! Students in AP Will Stop Lugging Heavy Bags Soon


Speaking about his plans after completing his BCL and M.Phil at Oxford, he says he wants to litigate on streams like intellectual property rights and constitutional law.

Technology has played a significant role is helping Rahul. He spoke about how the Screen Reader software helped him in his academics. Though he is confident that technology is aiding persons with a disability more than ever before, it still has a long way to go.

“It opened up a new world of possibilities for me. I could access the internet and also books. Similarly, I could take the service of writers which was also a challenge regarding coordination and compatibility. Now it has become little easier for someone with a disability when compared to 20 years ago. However, lack of infrastructure and an attitudinal barrier still exists,” he told PTI.

Bajaj also shares a strong opinion about terms used to refer to persons with disability. He says how words like divyang (used predominantly by the government), differently-abled and specially-abled should not be used as it leads to otherisation and alienation.

“They should be treated as equals. In India the problem is that there are resource constraints,” he said.

The law student who is working at a top Delhi law firm at the moment has also interned under Supreme Court and High Court judges.

He describes his experience saying how there was no system in place to ensure that he could perform the duties as a law clerk including accessing files.

“It was my good fortune that the Judge (SC Judge UU Lalit) under whom I was interning was very forthcoming and supportive and took extra efforts for me,” he said.

He reiterated the need for better infrastructure for persons with disability citing how renowned late physicist Stephen Hawking could not visit the Taj Mahal due to lack of ramps.

He attributes his success to his ever-supportive kith and kin including his father, Sunil, a paediatrician, his mother, Kajal, a homemaker, and his sister who is a gynaecologist.

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Paralysed Man Who Crawled to Dig a 200-Foot Path Receives a Very Special Gift!

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Restricted mobility arising out of partial paralysis or other medical conditions can be severely debilitating.

India’s track record regarding inclusive environment and accessibility for the differently-abled is nothing to be proud of, and the government urgently needs to invest in making its public spaces more inclusive and disabled-friendly. And this is not just limited to restrooms and toilets.

Countless people in the country have been suffering from the government’s apparent lack of interest and apathy in this regard, and 60-year-old Sasi was one among them.

A native of Vilappilsala in Thiruvananthapuram, Sasi used to be a coconut tree climber until a fall from a tree left him paralysed from the waist below. He couldn’t stand up or extend his hands freely. A three-wheeled scooter seemed to be the only option for Sasi for movement, and he requested his village panchayat authorities to help him out.

However, his request was rejected by concerned officials, who pointed out the lack of a proper pathway leading to his home as a reason.

Sasi didn’t let his disability overcome his wish and instead, he set out to carve a path through a 150 feet high hill that led to his home.

For representative purposes. Source: Pixabay.

For the next three years, he crawled every day and using only a pickaxe and a spade, cut a pathway 200 feet long and 5 feet wide all by himself. Sadly, even after the pathway took form, the panchayat officials didn’t concede to Sasi’s request, reports Mathrubhumi, a local daily.

However, upon knowing his story and the years of hard work that went in the making of the road, some compassionate individuals teamed up and gifted Sasi a three-wheeled scooter. Unfortunately, his condition prevented Sasi from opening up his palm properly, because of which he could not receive the driving license needed to ride the scooter and continued to crawl along the path he made himself.


You may also like: This Family in Surat Gives out Free Wheelchairs to the Needy & Cooks for 150 Kids at a Govt School


As they say, bad times never last too long. Sasi’s life took an incredible turn when a group of officials from the Antrix Corporation Limited in the Vikram Sarabhai Space Centre gave him a gift he would never forget—an automatic wheelchair that could be controlled by sitting on it!

With this heart-warming intervention, Sasi now hopes to eke out a living by selling lottery tickets and look after his wife and two kids. In recognition of the man’s three years worth of blood and sweat, the residents in his village have named the path after Sasi.

(Edited by Gayatri Mishra)

Featured Image Inset Source: Mathrubhumi.

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Exclusive: He Lost His Sight but Bagged 13 Medals and a Rhodes Scholarship!

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Rahul was only six-months-old when his family realised that his eyes didn’t respond to visual stimuli the same way as compared to other kids his age. For almost four years, they ran from pillar to post and got numerous tests done with no success. While some doctors deemed it as a passing phase, others failed to diagnose what his condition was all about.

It was only in 1998 when a four-year-old Rahul was taken to Chennai-based Shankar Netralaya, was he diagnosed with a congenital retinal condition that he had been affecting his vision from birth.

“Growing up I have had less than 5% vision. My visual acuity is 3/60 which what I can see at a distance of three meters, an average person can see at a distance of 60 meters. So my level of vision is such that I am completely blind for all practical purposes,” says Rahul speaking to The Better India.

Today at 23, Rahul is the country’s first disabled student to win the prestigious Rhodes scholarship to pursue a Bachelor of Civil Law and M.Phil from the esteemed Oxford University.

visually impaired lawyer

It is also important to say that Rahul doesn’t attach a lot of emphasis to this newly bestowed label, as he doesn’t think his disability is his defining attribute.

Though the general thought process for most parents of children with disabilities where he grew up was to send their kids to a special school, Rahul’s parents fought for his right to an inclusive education. And so, from 2000-2010 he studied at a mainstream school in the city which was funded by The Blind Relief Association.

The school hadn’t had any students with disabilities until Rahul was admitted. Despite the many challenges he faced, the underlying idea for the boy as well as his family was to learn from their mistakes and move forward in a very constructive way.

Soon after he finished his junior college, Rahul decided to pursue law.

Speaking about his motivation and inclination to explore a career in law, the 23-year-old – who works as an associate for Trilegal – says, “As someone with a disability, I realised at a very early age the importance of learning to advocate for yourself. Learning to assert yourself and make your voice heard. And when I knew the intricacies of self-advocacy, the next logical step for me was to advocate for others, and I knew that law was the best medium to do that.”

Rahul’s disability was further exacerbated by the fact that he lived in a small town, he says.

“Growing up there weren’t many stories of successful people with disability I learned about or could draw inspiration from. At the same time, we lacked access to adaptive technology, or infrastructure in several respects when compared to institutes in bigger cities like Mumbai or Delhi,” he says.

But once he started doing well in academics and carving a niche for himself, Rahul’s disability slowly began receding into the background.

“Your disability isn’t something that goes away; you learn to live with it. And I started coming to terms with it using the other qualities that I was able to bring to the table. Also, I believe that my disability has given me fortitude and resilience to deal with difficult challenges,” he says

Even while pursuing law after his 12th Grade, Rahul decided to take the road less traveled. While most of his peers (who had high aspirations) decided to move to MLUs abroad or in bigger cities, Rahul decided to study in his hometown, Nagpur.

“My family was of the view that MLUs had very few students with disabilities, and the ones who were able to establish a successful career were even fewer. And they didn’t want me to be on the fringes due to these attitudinal and infrastructural barriers.”

Many of Rahul’s peers who attended these law universities did share their experiences of running from pillar to post to get accommodation like a writer, getting extra time or accessible study material.

“In my hometown, I had all the resources and the support system I needed. And so, my family thought I should continue my law education here. But in hindsight, I began realising that while my peers would go to international moot court competitions, across the globe, get placed in leading law firms during campus placements and in general extract a lot of value from their college experiences, I had no such college experience to speak of.

“Apart from three or four excellent teachers who deserve full credit for moulding us, we didn’t really have the kind of exposure or platform to establish a meaningful career in law in the long run,” he says.

In the midst of all of this, Rahul’s biggest challenge, therefore, was to stay motivated and continue aspiring higher notwithstanding his immediate surroundings.

Speaking about the major challenges during the course of his internship, he says, “There were quite a few law firms that rejected me right away without telling me the reason. Without engaging with me, they had decided of their own accord that they did not have the infrastructure to accommodate someone with a disability.

“Even in a few firms where I interned, they didn’t let me go to court because they thought I wouldn’t be able to manage. And while I do understand that my security was their concern and they wouldn’t want to be blamed if something went wrong, it was restricting in some ways. Till date, despite my achievements, many tell me I should perhaps opt for a job that isn’t fast-paced or requires me to sit in one place, not move too much.”

But Rahul explains how fortunate he has been in terms of finding at least one individual in every firm he worked at who looked past his disability.

“In every place I worked, despite the challenges, I was invariably able to find individuals who were willing to look at my skill as opposed to the white cane. Every person with a disability needs such individuals at their workplace who invest in you, understand you and embrace your disability to give you the same opportunities as everyone else,” says Rahul.

But yes, attitudinal barriers continue to exist. The world is not a kind place for many visually-impaired lawyers until they prove they are exceptional.

“Until you haven’t won medals or scholarships or are so exceptional that your employers have no option but to hire you then things are quite difficult for lawyers with disabilities. Despite the advent of technology, the challenges continue to be many like inaccessible websites, inability to refer to hard copy documents, inability to independently read out from the file in court, etc,” he says.

Rahul has also co-pioneered a series of interviews featuring lawyers with disabilities to break stereotypes and foster dialogue about the inaccessibility of the legal profession. You can find it here.

Getting the Rhodes is still an achievement Rahul hasn’t been able to come to terms with.

visually impaired lawyer
Rahul at the at the 105th convocation ceremony of Rashtrasant Tukadoji Maharaj Nagpur University (RTMNU) where he clinched 13 gold medals.

“It is something no one is prepared for. It is not something you envisage when you are out of law school because in ways more than one the scholarship is unusual for a law student to accomplish too. And though it has been five months, since the results came out, I am only trying to sink it in.”

Nonetheless, Rahul calls it a very humbling moment indeed. “It is a great honour and platform. It makes it incumbent on you to make the most of it and extract maximum value from the experience. The reason why the Rhodes means so much to me is that I can cite it is a powerful affirmation of my competence when people express doubts about what I may be able to do, given my disability,” he adds.


Read more: Lockers in Schools! Students in AP Will Stop Lugging Heavy Bags Soon


In a message to all law aspirants, including persons with disability and able-bodied, Rahul says, “It is very important to learn to hold yourself accountable and responsible for your actions. Don’t sit back with folded hands and hope things will fall into place or people will embrace you. If you don’t stop making excuses, you are not going to be able to move forward constructively.

“I have no doubt in my mind that the barriers that one has to face as a person with a disability are stultifying. But at the end of the day, the onus is on you to move past these barriers. Don’t focus on what you can’t do, focus on what is it that you CAN do. It is this attitude and hard work and not sympathies that will help you do something meaningful in the long run,” he bids adieu.

If you think Rahul’s story is commendable, write to him at rahul.bajaj1038@gmail.com.

(Edited by Vinayak Hegde)

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Radio Saved The Paralympic Star: How Tunes Transformed Deepa Malik’s Life

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In 2016, a unique radio-documentary won the National Akashvani annual award. Bird of Fire featured Deepa Malik, the first Indian woman to win a medal at the Paralympics. In 2012, at the age of 42, she became the oldest recipient of the Arjuna Award.

Being a paraplegic has never stopped Deepa. She has won over 17 international medals and 58 National Gold medals in shot put, swimming and javelin throw and several other accolades, including the Padma Shri in 2017.

But the journey towards this kind of success has been no less than a miracle, and the radio, she says, has made a significant contribution to the magic in her life.

Deepa has won over 17 international medals and 58 National Gold medals

“It was in the early 1970s that my parents noticed weakness in my lower limbs. They realized that I was unable to climb the stairs. In 1975, at age five, I landed in the Pune Command Hospital. The doctors were unable to diagnose my illness. The technology had not developed. MRI or CT scans were not available. They tested me regularly, and treated me for just about anything. As my condition deteriorated each day, I was stuck to the same room, the same bed for over a year,” says Deepa, talking at the National Radio Festival held earlier this year.

While the television had made an entry by the 1970s, accessing different channels was not an easy task. “Usually someone had to go out and rotate a 20 meter long antenna tied on to a tree. I found it very difficult to find such a person. So I spend my entire day listening to the radio. And that was the beginning of my unique partnership with the radio.”

The time at the Pune command hospital ended with a diagnosis. Deepa had a tumor in her spine. She was operated upon and after another year of rehabilitation, she started to walk again.

She put the years of struggled behind her, but not her fascination for radio. A big cricket fan, she and her two friends in college decided to invest in a radio to listen to the cricket commentary. Unable to resist it, they bought a pair of headphones and decided to listen to the commentary during class hours.

Finally, the teacher caught the trio. As a punishment, the teacher sent her to the cricket coach. “If you are so interested in cricket, you should try it,” he said, Deepa recalls. Soon she was hooked to the sport and became a part of the Rajasthan Women’s Cricket team. “And that was the first time I feel, I became anchored to sports.”

Deepa Malik speaking at the Radio Festival in Delhi

It was around that time that Deepa met Colonel (Retd) Bikram Singh Malik. They fell in love, and then the radio reappeared again.

“In our times, a letter used to take about 15 days to reach. My fiancé was a young officer in charge of a convoy deployed to take them from place A to B. He would never receive my letters. The only idea of romance was through the lovely songs on the radio. They say radio creates pictures; I could literally fantasize my love story on each of the songs played on the radio. This kept us going.”

Her eyes light up when she talks about her two daughters. She always wanted to have a family, she even dreamt about the names of her children. “In our unit, there were two sons Kamal and Neeraj and their names meant the same, the lotus flower. There was another couple whose daughters were named Saiyam and Priyam. They didn’t mean the same, but they rhymed. When I became a mother, I wanted my children’s names to mean the same, and also rhyme. Again, the radio came to my rescue. I would hear endless song requests from contributors, on the various programs, and I hoped to find a pair of such names. And find I did! I named my daughters Devika and Ambika.”

Her razor sharp humour kicks in, she adds, “It’s a different story that now my husband teases and sometimes calls me ‘Chandalika’.”

Deepa Malik received the Arjuna Award in 2012 at the age of 42

Deepa’s life took a dramatic turn in 1999. Her spinal tumours reappeared. Her condition was fast deteriorating and her husband was at the Kargil War. Deepa herself was at war with her failing health. “I couldn’t sit up for long, and I was constantly travelling for checkups. As my condition further deteriorated, I was admitted to R R Hospital in Delhi.”

The hospital itself was in a crisis mode. The entire hospital had been converted into an ICU as war casualties were flowing in. “I underwent a 20-hour long surgery. I became paralysed below the chest, there were complications in the brain, fluid had leaked, another surgery was conducted, and I was put on a ventilator.”

There were 20 others around her who were on ventilators in the same hall. And from time to time, a ventilator would start beeping “I felt like I was surrounded by the sound of death. It felt like a Chinese torture chamber. I couldn’t take it anymore.”

To rescue herself, Deepa asked for a radio. The hospital staff initially refused. Deepa insisted that she would wear headphones. “And then for the next 40 days, I continued to listen to the radio as a huge supply of batteries kept reaching me. The worst time of my life was seen through by a radio.”

Since her surgeries, Deepa has been bound to a wheelchair. But none of this has stopped Deepa from her love for sports and adventure. In 2008she swam for a kilometre at a stretch in the Yamuna against the current – for which she has two Limca records to her name. She received another mention in Limca Adventure Records when she became the first Paraplegic woman to cover a journey of 3278 Km from Chennai to Delhi on a bike.

She also drove across nine high altitude passes of the highest motorable roads in Ladakh in nine days.

Deepa became the first paraplegic woman to cover a journey of 3278 Km from Chennai to Delhi on a customized bike

At home, when Deepa is not on her wheelchair, she is confined to her bed. Yet, she needs to run a home and a family. “Sitting in the bed I can run the house because I have acquired the quality to understand sounds – In which room is a fan running unnecessarily? How many whistles has the cooker made? Was the ghee too hot when the tempering was prepared? Did the cumin seeds burn? Which pan has been taken out to prepare tea? I then shout out to my help, no not that pan, the other one. My help is usually shocked. This is the power of sound. This is what falling in love with sounds has given me,” says Deepa as she smiles tenderly.

Celebrated artist Frida Kahlo once said ‘Feet, why do I need you, when I have wings to fly’. Deepa Malik’s life is a soaring example of such a flight.

Watch the complete video of Deepa’s address at the Radio Festival here:

 

Deepa Malik's Address

Deepa Malik

Posted by The Radio Festival on Thursday, February 22, 2018

 

Lakshmi Karunakaran is an educator and community media professional based in Bangalore. She works with Radio Active 90.4 FM as a producer and RJ. She can be reached at lakshmikarunakaran@gmail.com

 

 

Rejected for IAS, This Gritty Women Became a Crusader for the Differently-Abled!

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In India, there are various government initiatives and a number of non-profit organisations working towards the upliftment of the differently-abled population.

However, despite these efforts, when compared to countries around the world, one has to admit that there is an inherent gap in the opportunities and provisions for the community in the country.

Stamping one’s identity with their limitations for an entire lifetime, the failure of both the government and civil society in this regard, has resulted in not only restricting many talented individuals from realising their full potential but also prevents our fellow citizens from living their lives.

Sruti Mohapatra, a native of Odisha, had been one of those promising individuals, and many would say that she had a great future ahead of her.

Smiling even at the face of disparity, Sruti Mohapatra. Source: Facebook.

She dreamed of becoming an IAS officer, and had cleared the UPSC civil services exam in her twenties and made it to the Group A allied services.

With her eyes still lingering on the coveted administrative services, Sruti gave the exams another shot in 1987 and managed to clinch the interview call. Unfortunately, a few days before the interview, Sruti ended up severely injuring her spinal cord in a devastating car accident that would cost her the dream she had carried forever.

At that point of time, no constitutional or legal provisions existed that could be directed in her favour. Even the Equal Opportunities Act (1995) was put into effect over a decade after the incident that left Sruti wheelchair-bound. After multiple requests to the UPSC, she was only offered a relegated post and that too, slipped out of her hands when she questioned the system.


You may also like: Meet the Differently Abled Woman Who Trained a UPSC Topper & Secured a Rank Herself Too!


Despite the debilitating accident, Sruti mustered up the courage to move on from it and began a study circle for civil services aspirants in training programmes that were sponsored by both the union and state government in the same year itself—something that she continued till 2006.
This gave her a financial independence that otherwise would have not materialised, had she given up hope.

Eventually, Sruti chose to pursue a different course of work—advocacy and social activism to initiate changes for the differently-abled community in Odisha—that would change her life.

This way, instead of giving up in a situation that would break even the most strong-willed person, she decided to work towards the betterment of differently-abled people.

Source: Facebook.

In 2001, she established Swabhiman, the State Disability Information and Resources Centre in Bhubaneswar, which works towards empowering differently-abled people in the state and has been essaying the role of the chief executive since its inception.

In 2007, greater responsibilities walked into her way as the director of the Odisha IAS Study Circle, which was a career counselling and tutorial centre for students. Under this organisation, she successfully trained hundreds of students who now occupy various positions in banks, research institutes, universities and civil services.


You may also like: Disabled and Broke, How Dharamveer Still Became India’s Greatest Cricket Fan!


But what the iron-willed lady will forever be remembered for by the differently-abled citizens of Odisha, will be the elemental role she played in paving the way for devotees who use wheelchairs to access the Jagannath temple, in October 2009.

She managed to mobilise this through persistent appeals to sevayats in Puri and the state government along with other human rights activists.

Today, the 54-year-old is a shining example of overcoming a terrible situation, to not just people afflicted with varying forms of physical and mental limitations but for each one of us.

The wheelchair is the only limit for Sruti and that too, when it comes to mobility but when it comes to dreaming and transforming it into reality, there are no limits.

The iron-willed lady, Sruti Mohapatra. Source: Facebook.

In recognition of her outstanding contribution to the society, Sruti was bestowed with the CNN-IBN Real Heroes Award in 2010. She was also awarded the Vidya Bhawan Social Service Award by the former President of India, Pranab Mukherjee in 2013.

A salute to the unstoppable woman that is Sruti Mohapatra, who did not let anything, not even failure, to pull her down.

(Edited by Gayatri Mishra)

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Dystonic Cerebral Palsy May Have Affected His Limbs, But That Did Not Stop His CET Dreams

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Battling dystonic cerebral palsy, a neurological condition marked by involuntary muscle spasms and unwanted movement, 18-year-old Madhukesh Bhat overcame the tough odds to appear for the Common Entrance Test this year.

As Madhukesh was unable to write on his own, his parents had sought the Karnataka Examinations Authority’s permission to utilise a scribe.

“We had our fingers crossed until Tuesday evening when Karnataka Examinations Authority (KEA) called us to inform that a scribe can be used to write the CET on behalf of Madhukesh,” said his mother Sharada to The New Indian Express.

“We had almost lost hope that he would be able to write the test. His junior in (PU) college appeared as a scribe for him. Madhukesh attempted the Mathematics paper on Day 1 and felt it was easy. Considering him as a special case, KEA provided him 20 extra minutes and also a separate room,” she added.

For representational purposes only. (Source; Facebook)
For representational purposes only. (Source; Facebook)

Speaking to the publication, Madhukesh said that he has his mind set on becoming a computer engineer. At the Pre-University College level (Class 11 and 12), he took up Physics, Mathematics, Chemistry and Computer Science with the intention of studying Computer Engineering in the future.

However, it was difficult for his parents to find a seat for Madhukesh in a PU college, even though he scored an impressive 91% in the Secondary School Leaving Certificate examinations. Many PU colleges in Bengaluru refused admission. While some colleges did present the possibility of admission, they weren’t ready to offer him the subjects of his choice.

Also Read: Meet Jitendra Mane, Who Teaches Rural Children Despite His Crippling Disability

Finally, the Jain College in Jayanagar admitted Madhukesh with his choice of subjects. Both the principal and teachers sought permission from the PU education department to find a scribe, who would appear with him for the computer lab exams.

“I did not face any problem after joining the college. Although it was little difficult for my classmates and teachers to understand my words, everyone treated me like a normal person and supported me well,” said Madhukesh to the publication.

Also Read: How a Visually Impaired Man Helped Employ Over 7,000 Persons With Disabilities

While Madhukesh is unable to eat on his own and wear clothes, his parents have supported and helped him overcome it through yoga classes. It is incredible that the young man has found the will to move forward with his life.

We wish him all the best.

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This Unique Project in Ahmedabad Will Help You Appreciate The Struggles of the Visually-Impaired!

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As I entered the hall, I was transported from the realm of the sighted to the domain of the visually impaired. With trepidation, I began to walk gingerly, dependent upon my articulate guide, Jaidev, who is visually impaired.

Welcome to the project called Vision In the Dark, set in the premises of Blind People’s Association (BPA) located in an upscale Vastrapur suburb of Ahmedabad. The underlying objective of the project is to sensitise people about how fraught the path of the unsighted is.

“We want to sensitise people. The project operates on two premises–how difficult it is for anyone to manage darkness and change the perception of the people about how the visually challenged manage their life by developing alternative senses, and can even progress,” says Dr Bhushan Punani, executive secretary of BPA.

An alumnus of the prestigious Indian Institute of Management, Ahmedabad, Dr Punani entered the lives of the inmates at BPA like an angel, leaving plush managerial posts behind.

Dr Bhushan Punani

Vision in the Dark is his brainchild. It is spread over pitch dark area of about 2,000 square yards, and the project is the only one of its kind in the country. The concept was developed by Mr David Curtis and Mr David Sadden from the UK, with existing models in Vienna and Amsterdam.

The idea of the project was first conceived in 2005 when a team of Health Link World Wide, UK, created an experiment at the BPA premises. The team led by Dr Punani spoke to visually impaired people across age groups and backgrounds to discern their physical, social and psychological difficulties.

Finally, Vision in the Dark came into being in October 2015.


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Here, the whole area is sealed, and everything is painted black–from the brickwork to the floor, and furnishings such as curtains, tables, chairs, fans, air conditioners and even the path used to assist pedestrians who are visually impaired. There is no scope of light entering the area. With authentic ambient noises from street stalls, rough roads and other barriers, the authorities have tried to communicate the problems of the visually disabled.

Before entering the hall, the guides insist that visitors read the instructions given on the board outside the hall.

Visitors are requested not to panic or scare others on entering the facility, and if they wish to leave the hall, they are to inform the guide who would escort them out.

The organisers have found that individuals suffering from hypertension couldn’t endure the darkness, while some others would start sweating and be afraid of stepping into darkness.

Vision in the Dark is an elaborately designed black hall, complete with several compartments namely the temple, the village, a garden, a theatre restaurant, caves, a shrine of Vaishnodevi, and statues of national leaders.

The idols in the temple area and statues of national leaders are fitted with audio sensors which aid in identifying the idol or statue. My guide, Jaidev, would ask the visitors to touch the idol and identify them. Thereby communicating the challenge faced by visually impaired people because authorities don’t allow them to touch the idols.

They have also set up a village complete with a square, trees, birds, and a well where women draw water.

Likewise, there is a garden with plants, grass, birds, and wooden benches. How would the blind feel when they visit the village and the garden? That is what the organisers would like those of us with vision, to imagine. A small theatre that seats 50 people plays an audio clip from the Aamir Khan film, Taare Zameen Par, which centres around persons with disabilities.

How would a blind person visit a theatre, you wonder. As you go round the hall, your other senses are shaken from their usual indolent ancillary role in navigation, and you begin to learn about sensory inputs. That is how the blind manage their lives.

In the hall, one would realise that even the simplest tasks like opening doors, climbing stairs, pouring hot drinks, or eating a meal in the dark, are challenging.

 

The theatre at ‘Vision in the Dark’.

 

Visitors would marvel at the achievements of the disabled that reflect the indomitable human spirit and its capacity to adapt, overcome and succeed.


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For the blind, though, the biggest impediment is not the frailty of their body or the hostilities of the physical world but the failure of their fellow beings to recognise them as the same.

The visit to the Vision In the Dark, albeit for a couple of hours, was compelling. The experience, though, did not touch upon other weighty issues faced by the visually impaired — such as difficulties in finding employment or attaining a sense of accomplishment and self-worth.

(Edited by Shruti Singhal)

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Kerala Students Build Low-Cost Alternative to Voice-Controlled Wheelchairs!

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Never before has the scope of technology been harnessed in such an expansive manner, in the service of the differently-abled population across the world.

Scientists, researchers and even school students have been coming up with brilliant brainwaves in recent times, which if made available in the markets, would help ease the limitations that the community often finds itself grappling with.

One such amazing technological innovation, to aid mobility, is a voice-controlled wheelchair devised by students of NSS College of Engineering in Palakkad, Kerala.

For representative purposes. Source: pxhere.

The geniuses behind the innovation are final year Electrical and Electronics Engineering (EEE) students P Athira, Midhun Mohan, Jithu S, M Lekith, CK Manu Shankar and CS Shilpa, who not only designed the wheelchair but also built it as part of their college project in less than two months.

Although many types of voice-controlled wheelchairs are already available in markets across the globe, these are often very expensive and quite beyond the financial reach of the common Indian population. This issue prompted the students to work on a wheelchair prototype that would be easy on one’s pockets.

On a budget of only ₹8,000, they developed a wheelchair using the motor of a car wiper. “A small chip called voice module is installed on the micro-controller of the wheelchair. Directions will be given through this chip,” Athira and Midhun told Mathrubhumi, a local Malayalam daily.


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Currently, the contraption comprises of an iron frame attached with cycle wheels. While the current prototype can carry people weighing up to 75 kg, the students hope to use a budget of ₹10,000 and develop the innovation further with a better motor and other facilities.

“Replacing the iron frame with a fibre frame will reduce the weight of the wheelchair. It will improve the operation of the wheelchair,” said Dr V Devi, the HOD of EEE department, and professor C Praveen Kumar.

It is highly commendable to see these youngsters applying their years of learning, for a better and compassionate purpose. They intend to make their innovation available to hospitals and palliative care units across the state.

We hope that they are successful in their endeavour!

(Edited by Gayatri Mishra)

Featured Image Inset Source: edex LIVE.

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World’s 1st Eye Language Guide Made in India To Help the Paralysed Interact Without Speech!

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Have you realised how we take our abilities for granted sometimes? If you need a glass of water, you get one. If you need to rush somewhere, you sprint. If you are angry, you yell or express it with a show of hands.

It perhaps doesn’t occur to us that over 60 million people in the world suffer from spinal cord injuries and brain strokes. Conditions such as ALS (Amyotrophic Lateral Sclerosis) and MNDs (Motor Neuron Diseases), render them partially or completely paralysed. They survive for years, bound to their beds or wheelchairs with no power to express even the smallest need or desire.

But one innovation is set to change that. What if we told you that these individuals could communicate with a technique that requires no speech or use of hands or fingers?

Using that one part of the patient’s body that doesn’t betray them till the very end–their eyes–TBWA India has conceptualised, designed and developed the world’s first eye language guide.

World's Eye language guide

After several months of research with doctors, patients and caregivers in association with the non-profit organisation Asha Ek Hope Foundation and NeuroGen Brain and Spine Institute, the eye language guide ‘Blink to Speak’ was launched last week.

With the help of this guide, patients with paralysis or those on ventilators who cannot speak or move but have alert minds can communicate with their caregivers and families.

This is a relief for patients worldwide, struggling with existing alternative hi-tech assistive communication devices which are not only tedious to operate but also exorbitantly priced.

The eye-language guide is free of cost and readily available for download to patients and their caregivers across the world.

‘Blink To Speak’ guide uses 50 simple eye movements to build an extensive eye language.

It assigns basic combinations of eye movements to simple messages that the patients need to communicate. Each set is made of eight alphabets of the eye language–Shut, Blink, Left, Right, Up, Down, Roll and Wink.

From simply saying yes or no to signalling danger or emergency, the ‘Blink to Speak’ guide allows patients to express each of these messages with simple permutations and combinations of eye movements.

A few examples of communication through this language guide are as follows:

World's 1st eye language guide final-

World's 1st eye language guide final-

World's 1st eye language guide final

How did the concept of creating an eye language guide come into being?

Speaking to The Better India, Parixit Bhattacharya, Managing Partner Creative of TBWA India shares, “The idea came to us when one of our team members, Geet Rathi, was caring for an ALS patient at home. The patient’s body was giving up slowly, and he was in the last stages of ALS. She ended up talking to him through the blinking of eyes. She would write common messages on the curtains of the room and the patient would point to the pertinent one with his eye.”

When Geet Rathi, a Creative Director, shared her idea with the team, Parixit Bhattacharya, the Creative head at TBWA India decided to create an extensive eye language for such patients who were often at the mercy of their family members to understand their needs.

He got a team on board who brainstormed for months and came up with 50 eye movements and matched it to different everyday messages that the patients would want to communicate.

While 50 signs cannot humanely cover everything there is in the world to communicate, the illustrators came up with a separate alphabet page in the guide where they dedicated combinations of simple eye movements to each alphabet from A to Z. This would help patients come up with a different word even if the guide didn’t cover it!

Speaking about the challenges of creating this language, Geet Rathi says, “Each permutation and combination of eye movements had to be very different from the other as well as be easy for the patients to do and remember the following day. Also, considering that many of these patients couldn’t speak or would require their caregivers to assist them in holding the book, we had to keep the design easy to understand even from a distance.”

When the TBWA India team connected with Asha Ek Hope, which is one of the largest NGOs in India for ALS & MND patients, it’s Founder President Dr Hemangi Sane, an ALS patient herself, was very excited. Apart from explaining how this eye language could be a breakthrough for the many patients she interacted with, she also gave them inputs about other messages they could add.

When the time came for a pilot test among real-life patients, their families and caregivers, the team approached NeuroGen, a hospital in Navi Mumbai that undertakes stem cell therapy and treats a host of patients with spinal and brain injuries.

Speaking about the many learnings from the pilot, Sagar Jadhav, Associate Creative Director and Arshia Jain, the copywriter from TBWA India share, “We wanted to make sure the guide was user-friendly. While it was easy for most of us to do these eye movements, when we ran the pilot with a few patients, we realised a few combinations were difficult for them to do. They would get tired soon. So we had to ensure that no combination required them to do more than four movements together. For many patients in the last stages of ALS & MND, we realised that even though they were doing the signs right, the caregiver couldn’t understand it due to the loss of muscle and facial disfigurement. We also had to ensure that if the user repeated the message twice or thrice, it couldn’t be confused with another message.”

The team also shared that this eye-language guide could take anywhere between two to three months for the patients to learn and memorise depending upon their health condition.

Impressed with the guide, Dr Hemangi Sane of Asha Ek Hope as well as Dr Alok Sharma, a leading neurosurgeon and Director of NeuroGen decided to launch the guide as a book. Through their associates, they hope to distribute the book for free to all their patients and those in other hospitals as well.


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John Julius, an employee at Asha Ek hope, suffered quadriplegia about three years ago. For almost a year when his body was paralysed, including his speech, he recalls how he would desperately try to wave his eyebrows and blink his eyes to communicate with his family. He would often get frustrated when they wouldn’t understand. “I was at the mercy of my family even for a glass of water. You cannot imagine what it feels like,” he says.

While he was getting treated at NeuroGen, he fell in love with his psychotherapist, and they got married. She shared with the team how easy it would have been for them if the eye language guide existed then. While parts of his body regained functioning over the years and he can speak now, John Julius is a great advocate of the ‘Blink to Speak’ guide.

“With advances in medical science, we use treatments like stem-cell therapy to save these patients. But we’re not able to give them a quality life. I believe ‘Blink To Speak’ is going to benefit innumerable patients around the world,” said Dr Alok Sharma from NueroGen.

Dr. Hemangi Sane added, “’Blink To Speak’ is going to break all barriers of paralysis and help millions express themselves.”

Parixit Bhattacharya, the Managing Partner–Creative, TBWA India, in a final message says, “We wanted to create an affordable and practical assistive tool for paralysed patients to communicate. We are proud to have created perhaps the world’s first Eye Language. Our in-depth research points to numerous uses for ‘Blink to Speak’ and we look forward to making this language a widely available tool for patients and their caregivers.”

Download Blink to Speak here.

The team behind Blink To Speak:
Parixit Bhattacharya
Dr. Hemang Sane
Geet Rathi
Sagar Jadhav
Arshia Jain
Chinmay Raut
Priyanshi Khemka
Sneha Iyer
Apurva Desai
Chinmay Patil
Ganesh Devekar

(Edited by Shruti Singhal)

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Remove Archaic Laws Discriminating Against Leprosy Patients: SC Orders Govt.

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Leprosy is arguably one of the most stigmatised and misunderstood diseases in India. In 2014, the country accounted for 58% of all leprosy cases in the world.

Even with such a high number of patients, we remain widely unaware about the nature of this disease, its causes, how it is spread and its cure. In fact, the fact that leprosy is curable is unknown to many.

If you wish to know more about leprosy and its prevalence in India, you can read this article about a Padma Awardee who was appreciated for his work in this field.

Apart from the sad reality of the general public being unfamiliar with the challenges of leprosy patients, they also have to deal with discriminatory laws, that really hit them hard.

Archaic laws dating to 1898 were in effect until recently. Although the Pauper-Leper Act of 1898 was repealed in 2016, it was but the first step to eradicating social stigmas around it.

Source.

The Vidhi Centre for Legal Policy realised that even after repealing this law, there were 119 laws that violated the fundamental rights of equality (Article 14), freedom of speech, expression (Article 19), life and personal liberty (Article 21) of leprosy patients.

They then filed a Public Interest Litigation challenging these violations.

One of these laws included disqualifying people who suffer from leprosy from attaining licences to become deed or document writers, or applying for jobs at High Courts across India.

Another law allows the spouses of patients to file for a divorce on the sole ground of being married to a leprosy patient.

It is evident from such situations that leprosy patients not only have to deal with a painful, prolonged disease but also from emotionally crippling social situations like discrimination and loneliness.

Source.

However, there is some positive news. In 2016, the National Institute of Immunology (NII) developed the first-of-its-kind vaccine for leprosy that could potentially bring down 60% of cases in three years. You can read more about this phenomenal vaccine here.

And now, the Supreme Court has stepped up its efforts to bring some relief to people who suffer from this disease.


While recognising that India has made a lot of progress from the times of the British Raj, to tackle the effects of this disease, the apex court has sternly ordered the Central Government to do away with discriminatory laws that violate the fundamental right of leprosy patients.


The Delhi Metro Railway Corporation (DMRC) was at the receiving end of some major criticism, due to its policy to make leprosy patients carry a certificate which states that the disease is not contagious.

“We do not approve of the stand of the DMRC that leprosy patients travelling in the trains must carry certificates to say that their disease is not contagious,” Chief Justice Dipak Misra told the advocate representing DMRC. The bench comprised of CJI Dipak Misra and Justices AM Khanwilkar and DY Chandrachud.


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The SC bench further ordered the removal of discriminatory laws that do not coincide with the medical development that has been achieved so far.

“We are sure the Centre and the states will rise to the occasion to remove the provision relating to disability (discrimination). Be it noted that we are conscious that leprosy is absolutely curable,” CJI Misra added.

In a welcoming move against archaic and discriminatory laws, the bench said, “Delete from statute books… all such laws. The disability has to be removed from the statute.”

(Edited by Gayatri Mishra)

Featured image source.

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‘Blade Cricketer’ to Lead Team India at Tri-Nation T20 Series for the Disabled!

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The IPL with all its glitz, glamour and marketing, has parked itself firmly on the interest-list of cricket fans in India. Well, this tri-nation T20 cricket tournament is going on right now, and India has a team representing the country. Sweating and training hard, these players have not let disability affect them.

The 6th-floor terrace of a building off Theatre Road has an AstroTurf pitch. A lack of proper practice facilities doesn’t deter these enthusiastic athletes, who will battle it out for top honours in the series, starting today.

Cricketers, some of them with more than 40% disability, faced a bowling machine, sending deliveries at 145 kmph. The athletes sounded enthusiastic and optimistic.

The T20 team is participating in the disabled tri-nation cricket series. Image courtesy:<a href="https://twitter.com/JoarderSuvro">Twitter</a>
The T20 team is participating in the disabled tri-nation cricket series. Image courtesy:Twitter

The team captain, Suvro Joarder, is the world’s first ‘blade cricketer’. In 2008, Suvro was a highly sought-after cricketer, well-known in Bengal’s cricket circuit. Unfortunately, an untimely bike accident took away his right leg. Suvro wasn’t disheartened, and thus began a long struggle–to learn how to use prosthetic limbs, and finally go back to the sport he loves.

A fast bowler Mandeep Singh, who lost his wrist to a grass cutter, learnt how to bowl and play cricket again.

Among the team members is a college professor from Mumbai, Mayur Dumasia, who lost his right arm at the age of 15, told The Telegraph how he re-learnt how to bat and bowl, using his left hand. Although he had faced a bowling machine before, he said the session was great, adding that its frequency could improve.

The cricketers felt happy and look forward to the match with Nepal today, especially after their victory over a team of 1st and 2nd division cricketers, in Vivekananda Park on Monday, 23rd April 2018 (please specify the date).


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The players do not let their disabilities come in the way of their dreams. Here’s hoping India brings this cup home, and these cricketers shine when their moment comes.

(Edited by Shruti Singhal)

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