Planting optimism to reap success

Born into a seven-member family, Amit Tyagi from Hapur, Uttar Pradesh had a difficult time growing up. Initially, it was out of poverty, his parents who were manual laborers struggled to provide for the five children. He is the eldest among the siblings, ambitious and determined to make the best of his opportunities. Though the parents were poor and illiterate, they sent all the five children to the nearby village school. But it was for the eldest Amit, expected to take up the responsibility of the family on his shoulders, who had to face a major challenge in life – ‘late blindness’.

He started losing vision late in 2010 when he was pursuing his 12th standard. He was detected with Multiple Sclerosis (MS) the same year by doctors at AIIMS. With that, his education halted. Soon after his vision impairment was detected, he began undergoing treatment in AIIMS, New Delhi trying to regain his vision. But in 2016, after six years of relentless treatment, the doctors declared that his vision was irreversible. This left him in shock; it was a moment that shattered all his dreams – to get educated, to earn a livelihood, to provide for his parents and siblings, to save his family from poverty and a lot more. After he realized that his eyesight couldn’t be restored, he resigned to a state devoid of hope and awareness about the future. This mental state led him to spend the next two years idle, confined indoors. After he happened to hear the Eyeway promos on the radio, he contacted our Helpdesk in April 2018. He was in a muddled state of mind, not knowing where to begin his conversation. Now at 27 years of age and having no experience of the world outside for almost a decade after his 12th standard, he had absolutely no knowledge of living a life with blindness. He asked a flurry of questions on how to live ahead, on pursuing education, gaining employment, accessibility, opportunities he can avail etc. Having the experience of handling many clients who have contracted late blindness, our counselor suggested Amit to begin with rehabilitation programmes and after that technology-related training like computer, screen readers and other software. The counselor also suggested some institutions like National Association for the Blind (NAB), Faridabad, Blind Relief Association, New Delhi etc. where he could avail all these training facilities.

Eyeway gets many clients who turn blind late in their lives and who can’t handle this immediate change it brings. Some plummet into depression, some lose hope and some remain misinformed for the rest of their lives. In such cases, the most significant step taken by Eyeway is to inspire confidence and provide them with the diverse opportunities available to them. Sometimes this approach brings immediate changes and at times, it stalls. But the kernel of the idea remains the same: Living a dignified and independent life with blindness is possible.

On follow-up, Amit Tyagi sounded positive and he would be joining National Association for the Blind, Faridabad for rehabilitation training in May.

Lending unflinching support

19-year-old Mukesh Singh (name changed) from Champawat, Uttarakhand is yet another visually impaired individual who was denied his right to education by unaware authorities. Visually impaired people being denied the opportunity to pursue education, to write exams, to avail scribe facility etc. is one area that still needs large-scale advocacy.

Born with visual impairment and gradually losing vision, Mukesh studied in a mainstream school till 8th standard in Champawat. His father, a Postman and his mother a farmer, encouraged him to study, though they were disturbed by Mukesh’s gradual loss of vision. But he was forced to halt his education due to total vision loss in 2013 when he was just 14 years old, having no clue about how to tackle this change. Being the only child his parents started panicking too. For the next; 3 to 4 years they sought treatment in many hospitals, spending a lot of money borrowed from friends and family. In the end, they had to make peace with the fact that their son’s vision could not be restored. This left the entire family in disbelief.

Mustering a lot of courage and heeding to the advice of many doctors they met, his parents instilled confidence in Mukesh. They prepared him to face any challenges ahead. For this, they decided to educate Mukesh, now 19 years old, because they believed it had the potential to change his life. But the problem arose when Mukesh applied for admission into his 10th standard through National Institute of Open Schooling (NIOS), Uttarakhand. He was denied admission in the NIOS center and suggested another center in Nainital much far away from his village.

Mukesh had learned about Eyeway from one of our older beneficiaries, Govind Singh. And so he decided to get in touch with the counselor seeking help to his problem with NIOS. Mukesh informed the counselor about his situation. Having frequently dealt with education-related issues of visually impaired, our counselor directly contacted the NIOS in Uttarakhand and intimated the legal provisions to allow enrolment to visually impaired individuals in education. This conversation made a significant difference and the authorities at NIOS allowed Mukesh’s admission once they were made aware of the rules.

Such issues of being denied equal opportunities in education are faced by visually impaired students across the country. This is still a grave issue considering the progress our country has made under the Education Act and policies. Inclusion is the key word in all these legal documents but it is casually overlooked in implementation.
On follow-up, Mukesh has been enrolled in NIOS, Uttarakhand and he will restart his education shortly. Our counselor also informed him about online libraries and physical libraries in NAB, R.K Puram and the NIOS library for further academic assistance.

Clearing the dark clouds of negativity

Ranaram, a 27 year old visually impaired hailing from Barmer, Rajasthan contacted Eyeway in 2018. While his ‘past’ inspired Eyeway, his ‘present’ seemed in contradiction to it. He comes from a six-member family but with meager finances. His father and four other brothers lived by daily labor. His father and the eldest brother died few years before but the rest of the family continued doing daily labor for a living. He is the only one in the family who has gone to school though not regularly or at the traditional age. None of these reasons have been a challenge; instead, they have only made a positive impact.

His visual impairment was a challenge to start schooling at a young age. But only after joining school he realized the integral role it would play in his life which also changed his attitude towards living with blindness. He initially studied in a blind school till 8th standard nearby his village. He never faced any difficulties except a self-doubt whether he and the other visually impaired children belonged to a special school.  Being very conscious of the value of equality, it made him think very early in his life about an inclusive society. His friends were big influencers in his life, most of them sighted, whose conversations, activities, hobbies etc. made him aspire to integrate into their mainstream lives. After 8th standard, encouraged by friends coupled with his own drive, he moved to a mainstream school in Jaisalmer where he studied for the remaining four years and completed his 12th standard.

For such a brave individual, it appeared as a surprise to the Eyeway counselor that he was sitting idle at home since 2013 after finishing school. Except for rehabilitation training in National Association for the Blind (NAB), Mumbai for a period of three and a half months in 2016, he was confined indoors for five years. He seemed reluctant to give a concrete answer as to how and why he came to this present situation, but surely he appeared to be in need of help. He said the mainstream school did not guide him, neither did NAB Mumbai. And when asked about his friends, the response was in the negative too. He kept retracting his statements and contradicting himself.

Instead of going by the ‘past’ which was self-contradictory, Eyeway counselor found a fix in Ranaram’s confusing ‘present’, that of five idle years indoors, the absence of any guidance, friends turning strangers among other domestic problems of his. Eyeway tried to become his friend, guide, and support to help him overcome all problems. He asked for institutions to get computer training so that he could find a job soon enough in Mumbai or Gujarat. Eyeway suggested Blind People’s Association (BPA), Ahmedabad and a few computer training centers in Mumbai. Again his reason to travel from Rajasthan to either Mumbai or Gujarat was to be with friends. Though his reasons and excuses were not convincing, the best effort was lent to resolve Ranaram’s issue.

On follow-up, the counselor understood that Ranaram chose BPA over other computer training centers because the training is free of cost. At BPA he has presently enrolled for a course in physiotherapy.

Confidence is inevitable

18-year-old Shreya (name changed) hails from a small town called Kalady in Ernakulam district, Kerala. They are a small family of four, struggling financially. They live by the fishing job of her father and the daily-wage labor of her mother. Shreya and her brother are visually impaired since birth. Shreya suffers from a condition called Nystagmus which is an involuntary movement of the eyes that causes loss of vision and depth perception.

Neither the low income, physical impairment of the children or the absence of essentials in the house have deterred her parents or Shreya to lose hope. Both the children are pursuing education and Shreya is an excellent student, topping in most of her exams in school. Her brother who is also visually impaired is pursuing higher education after finishing school. Shreya was referred to Eyeway by the doctors of Little Flower Hospital, Angamaly. When she approached Eyeway in April 2018, she was awaiting her class 12 exam results. She was very confident of successful results, thus she wanted to know how she can achieve her ambition of becoming a teacher while battling the gradual vision loss. She has lost about 40% of her vision so far and it’s slowly deteriorating further. She wants to make the best of her remaining eye-sight and wants to achieve success in life.

She is a very ambitious and she has a specific timeline in her mind to reach her goals, which she shared with the counselor. She was expecting the counselor to give her a career plan where she can manage a job in the teaching profession within the next five or six years. After discussing with Shreya the multiple opportunities available and the diverse ways to achieve it, the counselor helped her understand how to work towards achieving her dream career. The counselor informed her about choosing a subject for specialization, an area of interest, preparing for entrance exams, various colleges offering different courses, employment-related exams, and various internet domains to gather timely information from. He also shared with Shreya the need to learn computer and various assistive technologies for the future.

Shreya was looking for some assurance that her losing eyesight won’t come in the middle of her determination to succeed. The fact that Shreya never gave up on her dreams even in the midst of all adversities is commendable. When many give up in the face of such challenges, Shreya exemplifies courage as a visually impaired teenager. This open-mindedness also helped the counselor to successfully instill confidence in her. She awaits the beginning of a bright future while she waits for her higher secondary exam results.

Leading towards possibilities

Pankaj Kumar, a 19-year-old man from Bihar was born blind. He remained uneducated till 18 years; he sat idle at home not knowing how to live a life with blindness. Also, being born into a well-to-do family, he was ably supported and cared for by his parents and two siblings.

He never felt the need to be independent or gaining education till he heard the Eyeway radio promos for the first time in 2016. He contacted the Helpdesk in the same year and has been in constant communication with the counselor since then. Our counselor used this opportunity to mentally uplift Pankaj and also make his family aware of the education and rehabilitation opportunities for the visually impaired. The counselor suggested various training programs consistently but the family was reluctant to send him away from home. They cited many reasons in defense like Pankaj is physically weak, contracts illnesses fast, cannot adapt to unknown and new environments etc. Basically, the hovering concern of his parents kept him home for long making him an introvert.

Eyeway counselor seeing the need for changing the mindset of the family worked closely with them. They were made to understand that it will work against Pankaj if he were made to live a life confined to the house. Finally, through repeated counseling they agreed to enrol Pankaj in an NGO called Shubam in Bihar where he will pursue training in basic mobility skills, Braille script etc. for a period of three months.

Confidence is key

Veena (name changed), a 15 years old girl from Cochin, Kerala contacted Eyeway the day before her 10th Board exams. She is suffering from Bilateral Macular Scar which is gradually deteriorating her vision. Her visual impairment is more than 40% but still, she doesn’t possess a disability certificate. She hails from a low-income family where her father works as a “help” in a shop and her mother is unemployed.

She was directed to the Eyeway Helpdesk by the Little Flower Hospital, Angamaly, Kerala. She contacted Eyeway in the apprehension of failing in her exams because of her diminishing vision. She was worried of invigilators not cooperating with her condition in the exam hall. She was specifically nervous about her computer practical exam.

She was worried since she was not used to the computer keyboard. She is currently using a magnifying glass for better vision. Being a day before the exam there wasn’t much which the counsellor could help in terms resolving her immediate fears. But counsellor instilled confidence in her and also made her parents aware of the possibilities to live a dignified life with blindness. Veena nurtures the ambition to become a doctor and the Eyeway counsellor shared with her stories of successful visually impaired people. Counselor also gave her a basic idea about assistive technologies and assured to support her in the future.

Rediscovering by ambitions

Doreyappa is 35 years old and is a resident of Hassan district in Karnataka. He lost his eyesight due to Retina Detachment when he was in school. He has studied only till 7th standard. He could not continue his studies further both due to poverty and the onset of visual impairment. His father was a farmer and mother was a daily wager. He relied on parents to live after starting to lose his vision and never worked until he got married.

After getting married it dawned on him that he needs to work and run his own family. He started off as a gardener in a college in a Chikamangalur. He worked there for around 7 years. When he joined the gardening job, Doreyappa had low vision but during the course of the job, he turned completely blind. As a result he was laid-off. When he recently learnt about Eyeway, he decided to call our helpline for support.

On connecting with the counselor he was informed about Aadhar Yojana Scheme of the State Government under which he can get Rs. 5000 to set-up his own petty shop. He was also informed to contact his village Panchayat to avail the state scheme. He followed the counselor’s suggestion and took advantage of the scheme to setup a small shop of his own.

Recently he called the Helpdesk as a more confident man wanting to enhance his business. This time the counselor understanding his ambitions suggested Enable India’s Self-Employment programme. The programme on completion would certify his skills and provide a bigger loan to enhance the business. Though Doreyappa was keen on taking this up, he couldn’t join the programme on a short notice.

Eyeway on follow-up understood that his major obstacle was that the training was conducted 400 kms away from his village and he was not in a position to leave his family for a span of few months. The counselor empathized with his problem and suggested some alternate bank loans as an immediate solution to his problem.

Late blind and kept in the dark

Soman a 59 year old man from Ernakulum in Kerala contacted Eyeway Helpdesk at Little Flower Hospital (LFH), Angamaly. He was referred to the Helpdesk by the doctors of the hospital. Up until four years ago he worked as a truck driver and provided for his family comprising his wife, daughter and a son without any hiccups.

Owing to a nerve damage, he turned blind four years ago and his life took a turn for the worse. He has been estimated a vision loss of more than 80% by the LFH doctors. This has prevented him from driving anymore and has pulled brakes in his income. His son works but stays away from the family thus not financially supporting Soman. The only source of income now for the family is his daughter’s income. That also is not going to be permanent since she will be married off in the future.

Soman seemed unclear of his life ahead in his conversations with the Eyeway counselor. Late blindness has taken him by shock, clouding his thoughts. Our counselor guided him to enroll for rehabilitation training in Kerala Federation for the Blind (KFB). He was also suggested to get a Disability Certificate at the earliest so he can officially gain access to government schemes and provisions as a visually impaired person. Heeding to the recommendations made by Eyeway, Soman has joined the rehabilitation training programme at KFB. Once he completes his training, we will be able to further guide him on possibilities of getting back to work and life.