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PEOPLE WE ADMIRE
Year : 2022  |  Volume : 3  |  Issue : 3  |  Page : 307-311

A true visionary for the unsighted


1 Department of Ophthalmology, Amrita Hospital, Faridabad, Haryana, India
2 Department of Surgery, KEM Hospital, Mumbai, Maharashtra, India
3 Department of Surgical Gastroenterology, Amrita Hospital, Faridabad, Haryana, India

Date of Submission03-Dec-2022
Date of Decision09-Dec-2022
Date of Acceptance09-Dec-2022
Date of Web Publication28-Dec-2022

Correspondence Address:
Dr. Puneet Dhar
Department of Surgical Gastroenterology, Amrita Hospital, Faridabad, Haryana
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/JME.JME_150_22

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How to cite this article:
Dhar MY, Dhar A, Dhar P. A true visionary for the unsighted. J Med Evid 2022;3:307-11

How to cite this URL:
Dhar MY, Dhar A, Dhar P. A true visionary for the unsighted. J Med Evid [serial online] 2022 [cited 2023 Feb 1];3:307-11. Available from: http://www.journaljme.org/text.asp?2022/3/3/307/365858





Tiffany Brar is a crusader whose vision is much beyond the realm of seeing. A role model for the visually impaired; she does not let disability hinder her from enjoying even extreme adventure sports.

Losing her vision in infancy from Retinopathy of Prematurity, bereft of parental touch for a significant part of her upbringing, she surmounted all problems with determination to evolve a support ecosystem for the fellow blind. She truly lives up to the adage – Where there's a will there's a way, achieving in her early thirties what few can, in their entire lives.

She's a champion for the blind, becoming their courageous voice, to bring about a change in our attitude towards the visually challenged and ensuring that benefits offered to the blind for learning and sustenance percolate to even those at the village and panchayat level. She is hoping to change the attitude parents, society and the blind themselves have towards the visually challenged, and challenge what they can or can't do.

Her diction and command over English, Malayalam and Hindi is exemplary – she is well versed in 6 languages. Born to a Sikh army General and an Anglo-Indian mother she has made Thiruvananthapuram her home. She started her work of helping the blind by travelling in local buses, going to the homes of blind children, to urge parents to let their visually challenged offsprings come out of the shackles of darkness and embrace the light both literally and metaphorically. She found that many parents refused to acknowledge that they have a visually challenged child even as they hid them in a dark room denying them any opportunities for learning or vocation.

She started the Non-Profit Organisation 'Jyothirgamaya Foundation' which has grown rapidly and holds special consultative status with the United Nations. She has been recognised for her tireless efforts both in India and abroad and slowly her endeavours are bearing fruit. She is the winner of Holman Prize 2020 from the LightHouse for the Blind, USA. She has given at least 5 TED-type talks and is a powerhouse of energy as a speaker, leaving all spellbound. She has delivered an insightful talk at the European parliament in Brussels, and participated in their panel discussion on accessibility.

It's phenomenal to think of what has been made possible by this young unsighted lady whose vision is way beyond the sighted.

Her mission is to convey the felt needs of the blind, she is erudite and vocal about concrete steps that the sighted can take to make the lives of the unsighted better and easier. Her story can be a perfect antidepressant for anyone moaning about the shortcomings in their lives!

A team from the Journal of Medical Evidence (JME) interviewed her to know more about this spirited and optimistic young achiever. Here are some excerpts:

JME: Growing up in varying surroundings is challenging and doubly so if parents aren't there, and triply so if one is visually challenged. Tell us about your childhood and the problems you faced while growing up

Tiffany Brar: I had a difficult childhood. My schooling began in England where my father was posted, and learning there, was kinaesthetic – through actions, watching cartoons, answering questions and games like shaking jar and sing, come butter come-in order to make butter! In India, by contrast, it was all rote learning-sitting and writing with the slate and stylus. Losing my mother at the age of 12 and my father posted in different parts of the country including the Kargil War, I was forced to change schools and hostels with different languages, culture, mode of instruction. Some people held us by the hand, some dragged us by the shoulders so it was a variety of contrasting experiences. From a blind school in Trivandrum, where the medium of instruction was Malayalam, I had to sit in the back bench and was hit on the knuckles if I did not do well or even if I did. For instance, once in my third standard, when I answered the state capitals correctly I was actually admonished by the teacher for forcing a classmate to give the wrong reply so that I could be correct!! In another school, I learnt mobility skills, like fetching water from the stream. So the experiences were all varied – an army school with Hindi, a convent school where Christian values were taught to a Delhi school where the pace was too fast. Some places were good – at a blind school in Darjeeling, I learnt knitting, improving mobility and even running around with the other blind children. I was not made to feel as an alien!

In college, accessibility was a big issue. I could not travel alone so didn't partake in any of the college life activities. I was always excluded because of my disability whether it was bunking class or watching movies or whatever. So I became studious – but without the usual resources and even had to repeat a paper. I was lucky that Vanita didi came into my life when I was 16 years old and trained me in basic life skills, as till then I did not even know how to handle my menstrual pad.

JME: Jyothirgamaya the organisation that you established means 'From darkness to light'. It received Kerala State Award for Best Institution for the empowerment of Persons with Disabilities in 2019. Can you tell us how it started and its' activities.

Tiffany Brar: I worked at 'Braille without Borders' for 7–8 years – which trains marginalised sections to start their own social projects. I started a mobile blind school going to houses of the rural blind to train them in skills like mobility – the use of computers, phones and the white cane. We conducted camps in Cochin, Trissur and the North which made us aware of a lack of proper space to cope with the increasing demand of the number blind people willing to learn.

So about a decade back, we started the Jyothirgamaya foundation with only two students in a small building and registered it as a charitable trust. Currently, we can have ten students at a time. The mobile blind school activities stopped during COVID times apart from home visits for parental counselling. The residential training has courses up to 6 months, where learning is imparted in basic and advanced computing; the use of a smartphone; apps such as Uber, Swiggy, Zomato, Netbanking, etc., and also the use of various GPS applications, reading apps, Study related apps and games like chess. We also teach them the MS office package, internet operations, sound editing, software installation, interpersonal skills and English training. We also have added yoga and music to our curriculum and we take them on adventure trips to various places in and around Kerala. Students are welcome from any part of India – they have to be visually impaired and have a zest for learning.

So at Jyothirgamaya we basically do capacity building and empowerment to enable gainful employment including governmental offices, and in schools and colleges. We also go for sensitisation programmes to companies.

Additionally, we guide the blind on the facilities and schemes available for the visually impaired – about the bus pass, laptop availability in panchayats, etc.

JME: White cane is representative of movement of the blind from dependency to full participation in society. White Cane Day is celebrated on 16 October. Can you tell us about this ubiquitous White Cane for the visually impaired?

Tiffany Brar: White cane is an assistive device for the visually impaired, a tool for their independence. A white cane has three parts – the grip, the middle and the tip. The tip of a white cane is used to identify obstacles and the grip is where we hold it. The standard type is used to tap from left to right looking for potential obstacles. Another type, popular abroad, has rolling wheels at the tip for use in grassy terrain and inaccessible areas and is currently manufactured by Sparsh Trust from Dehradun.

JME: What are the mobile applications you teach the blind?

Tiffany Brar: Mobile technology has impacted us tremendously as a window to the outside world. All mobiles have an Automatic accessibility feature. 'Talk back' and iOS-VoiceOver are useful screen readers. Windows systems have Non-Visual Desktop Access which can be downloaded from the website nvaccess.org free of charge.

We use WhatsApp, Telegram channels, Instagram, and conduct online classes. We have recorded our curriculum, and audio tutorials for computers, English language and interpersonal skills on Telegram and it's accessible to our students and anyone else interested. Online classes using Zoom, Google meet, Microsoft and WebEx meet are accessible to us. We also use Zomato and Swiggy to order food from restaurants. Right swipe left swipe and double taps are the 3 main gestures that blind people use after typing the restaurant's name and getting its menu. Thus, in so many ways, the mobile devices have made a huge impact, especially after the pandemic.

JME: All work and no play, is certainly not your motto. Tell us about your Hobbies

Tiffany Brar: I enjoy reading Kindle and eBooks on female themes, those that are on inclusion and accessibility and Indian novels like family stories and family dramas. Malgudi Days and 'Inheritance of loss' are my favourites. I like to read Books that depict struggle of women or children or marginalised classes. I read about laws on disability, human rights, activism and advocacy. I enjoy listening to TED and other motivational talks, which inspire me to achieve more.

I'm a lover of adventure, I have done paragliding in Darjeeling and skydiving in Belgium [Figure 1]. I have jumped from 4000 feet high and it was a liberating experience to actually fly, to feel myself in the air with an instructor's commentary on the height. I could actually sense the air flapping by my ears. I loved the feel of wind, I loved to flutter and I thoroughly enjoyed both those experiences. I've done wall climbing, tandem cycling, rope riding as well [Figure 2]. Maybe I wanted to prove that blind people need not have any barriers, as according to the United Nations Convention on the rights of people with disabilities (which India has signed and ratified in 2006) – Everyone has the right to sports, recreation, enjoyment and entertainment. However, especially girls with disabilities, are forbidden by their parents to do such things because of fear of risk of losing life, falling down or getting hurt.
Figure 1: Skydiving in Belgium

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Figure 2: Simulated wall for Rock Climbing

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JME: Travelling is another of your passions, please share with us about your travelling experience

Tiffany Brar: Travelling means inclusiveness to be able to travel by bus, or train, to ask for public help, to interact with different people. To walk, to understand the different smells around you, the various landmarks that is what I call as inclusive travel.

I have travelled for sensitisation sessions to Poland, Belgium, Sri Lanka, Nepal, the UK and Germany. I have been to quite a few states in India and I do like travelling, for the different cultural perspective it provides.

I have travelled far and wide on account of my father's career in the military, which I am quite thankful for. At a young age, I learned different languages – by learning a language, you get close to the heart of a person, you understand their thoughts, you understand what they want to convey.

JME: Tell us about Braille literacy and how do the blind learn

Tiffany Brar: Braille literacy is going down because of the economic difficulty in printing in Braille. It is bulky, difficult to carry and people are turning towards technology – but sighted special educators should know Braille if they are teaching the visually impaired. Braille should be taught at a young age so that the visually impaired have the basic foundation to reading and writing just like the sighted learn to write with a pen. There are many online courses for learning Braille like Perkins School for the blind. In India, every state has a branch of the National Association for the blind, and there are online Braille courses, e.g. Facebook groups.

JME: Where do the visually disabled stand with respect to opportunities and attitude

Tiffany Brar: I have interacted with disabled people-visually impaired people in India and abroad. In India the attitude of people is quite retrogressive – due to poor facilities and lack of accessibility, there are a lot of attitudinal barriers.

For instance, there is a blind mathematician in Belgium, however in India, we are unlikely to have too many blind programmers or mathematicians because no one is there to give the right support, the right training, the right guidance, the right assistive devices.

In government offices, there are no posts for totally blind persons, there are posts only for the partially sighted, so we have requested the Chief Minister of Kerala to include them in the Kerala Public Service Commission. The PSC exam should be online, and the blind should get enough study material.

Visually impaired in India are very used to getting things done by the government, waiting for the government and not raising their own voices. It could be because they know that they will not be heard as they are a minority.

People with disabilities abroad lead near-normal lives. They go to restaurants, bars, and they travel. Here, in India, it's considered against the norm for a girl with a disability to go to a hotel and ask for food so even the disabled world is quite male centric. Women with disabilities are scared to travel alone. Although many are now travelling by bus, by train doing their work, it's still a matter of fear.

Abroad, they have government support, the pension schemes for people with disabilities, in some cases the government provides them with the latest assistive devices. However, here it is very difficult to even reach a government office. The government offices are not accessible for people with disabilities. Panchayats in the designated areas do not know what orders what circulars are there or what schemes are there, what devices are supposed to be given to the disabled.

JME: You are so warm, affectionate, eloquent and expressive, you must have a lot of friends?

Tiffany Brar: It was very difficult as a person with disability to make friends because you are in an environment where you have to be held, like even though I have my white cane in my right hand I have to be guided by the left hand or someone has to tell me. In a crowded area, they may feel hesitant to hold a blind person or if there are vehicles they might just run and they have to drag me. So, there are many challenges with regard to friendship.

While watching movies, when dialogues are not spoken and there's only action or sound, we want to know what's happening, so it may get irritating for the friends to explain what's happening.

Also there are many instances even in parties when we are going with a white cane, we have to stand in a corner while friends move around to meet others, you are left in a strange place not knowing which way to head to. Unlike the sighted we can't just walk up to a bunch of people and say hello, we don't get the vibe to talk to someone.

Making friends was difficult as people have to assist me with one hand or my white cane may tap someone's foot, hence it is difficult to find people who are motivated to befriend you.

So these are the barriers that I have faced as a person with the disability for the exclusion and socialised relation but I do have a small very very limited circle of friends with whom I don't feel that exclusion.

JME: Do you organise anything specially meant for women

Tiffany Brar: We have the women empowerment project where we conduct workshops for women once in 2–3 months, where women are taught about sexual reproductive health. They are taught the use of smartphones and short-term courses on self-defence techniques.

JME: Tell us about your latest venture: the first music descriptive video which was released in July 2022.

Tiffany Brar: Let us imagine what is happening in a song during a Bollywood movie – there are actions happening but nobody describes what is happening in the action, of course, we can hear the words of the song and we can hear the dialogues just before that song comes but we don't know what is happening in the song on the screen – they are showing forest/beach/home and so this scene we don't know…So, along with Sristi KC from Nepal who lost her eyesight at 17 years, we conceptualised this audio-descriptive video. In this, a blind girl shows the world of a blind, through her eyes, also showing him not to be dejected just because he was rejected in an interview, so it is about empathy and what blind people can do.

JME: You are the recipient of innumerable awards like 'Make a Difference Award', Rotary International's Vocational Excellence Award, Spindle Award. Any favourites?

Tiffany Brar: Both my presidential awards are dearest to me. The national award for the best role model amongst people with disabilities in 2017 was the best – as the President spoke of all my achievements and activities and even called me 'Bharat ki Saahasi Beti' – the courageous daughter of India and she is the correct recipient of the award.

It was an honour to receive the 'Nari Shakti Puruskar' in 2022 – the highest civilian honour given to women in India.

JME: Attending a Dine in the Dark programme wherein we dine blindfolded was an eye-opener to the daily challenges faced by the unsighted. How else can we increase the sensitivity towards the visually Challenged?

Tiffany Brar: By having more write up, more articles, more sensitisation workshops in companies such as simulation activities like people being made to sit in a wheelchair, their legs being tied, people blindfolded asking to pour teacups.

'Dialogue in the Dark' is conducted in the dark by blind people at a restaurant in Bangalore and Hyderabad. This and Dine in the dark should be done more often. People with visual impairment should come more out into the open, should be seen with their white canes walking around.

It's the same in the bus stand and railway station. It is assumed that the person who is with blind people will assist the blind. It's not only that the sighted should be sensitised but the blind people should also play their role, by trying to be independent, trying to use the assistive devices without any hesitation, asking for minimum help, explaining what you want, like tell me, when we reach the steps.

JME: What are the various hurdles to learning that blind people face in India

Tiffany Brar: The blind are made to sit at the back bench in the schools. There is lack of accessibility to proper books, right assistive devices, proper scribe facilities, Science and maths teachers do not have the assistive devices in order to teach blind people. Blind people cannot participate in a lot of lab activity, cannot do dissections – they cannot become doctors, we can work in the hospitals as supervisor/superintendents/data entry operators. They can become mathematicians, if given support and assistive devices. There are many blind people in India who do not know how to use a geometrical set especially made for the blind because no one taught them.

In India, the trend is that people study from 1st to 7th standard in the special schools and from 8th standard onwards in the integrated schools with the help of resource teachers.

These days, the concentration is more and more on intellectual and mental disabilities and hearing impairment, and less on blind people. The population of blind people is decreasing due to parents' awareness, better perinatal care – which is a positive factor, but the negative factor is that there are not enough educators for the blind person.

JME: What are your recommendations to the sighted

Tiffany Brar: My recommendations to the sighted are to treat people with disabilities as normally as possible – not exclude them from the general community, not sideline them. Also to employ more and more people with disabilities in companies, to acknowledge people with disabilities, to make roads accessible, to make public buildings accessible, to have Braille signages on all lifts and other buildings, to have price tags written in Braille in shops, to have people assist the disabled in the railway stations, in the bus stands.

To have audio announcement systems in the buses and the trains in India, to include people with all kinds of disabilities, to have sign language interpretation on the television news channels, to have audio description in TV serials movies and other TV programmes so that watching television is not a challenge for people with visual disabilities. On the whole to make the world a little more inclusive, more and more training and job opportunities for the blind. Even walking on the footpath can be a formidable problem with so many slabs, cobbles and unfinished road work. It is not fit for a blind person to walk. Also the hurdles in boarding the buses not knowing which stop to get down, not getting the proper audio announcement or proper information from the conductor in many instances.

JME: Thank you Tiffany for your time and insightful replies to our queries.

A young butterfly sharing the collected nectar from one flower to another, spreading her positivity from one inspiring project to another to achieve its fruition, our admiration increases each time we have interacted. Her TEDx talks are inspirational. As a society and on an individual level we are ignorant of the hurt, we cause to the blind by our lack of inclusiveness. We need to be more sensitised to the needs of the unsighted.

This gem of a young lady Tiffany Brar has certainly more human jewels than physical ones at the eponymous luxury store Tiffanys!

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.




    Figures

  [Figure 1], [Figure 2]



 

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