Having a disability is never a choice, but sadly it is a trait which can prematurely determine the success of the individual. This is visible in North America, with the subminimum wage legally given to individuals with downs syndrome (National Down Syndrome Society). In other cases, we see the recent integration of sign language training for health care professionals to accurately assist patients with hearing loss (Eldridge v. British Columbia, 1997). All of this being understood, we must strive to acknowledge how disability discrimination can be amplified in countries like India.

Poverty is kind of like an overruling theme in India, with roughly 300 million people living below the poverty line, it definitely finds its ways to seep through every single infrastructure in the country, damaging and hindering progress of the entire population. This is evident when we look at education rates, which are directly indicative to employment opportunities later on. India has made attempts to improve inclusivity for disabled children in the past, passing the Integrated Education of Disabled Children (IEDC) act in 1975, which worked towards integrating those with mild to moderate disabilities into regular classes with financial aid (Sharma, 2005). However, this initial attempt like the many which followed were unsuccessful, as the UN reported that 75% of children with disabilities have never attended school a day in their lives in 2019 (UNESCO Office New Delhi).

To help combat this, Dr. Bickert went to one of the only 388 hearing impaired schools in India. This is where he met a Jyoti, who at the time was in the eleventh grade, she is almost completely deaf. At the school, Dr. Bickert stood in front of every student, and asked “what do you want to do when you grow up?” with a mixture of recently learnt sign language, and some help from the teachers. Notably, only Jyoti replied, “a tailor” she said, a trade which India is famously known for with an array of designs and patterns being visibly splattered across the streets of every large city in the country. The industry is vast and has a lot of room for more to begin working in it. However, with the added of difficulty of communicating with someone who has an hearing impairment combined with the fact that many women who are buying the clothing are often not educated enough to read, many are unwilling to put up with the extra inconvenience to provide them with any real business.

Looking back, it is understandable that the other kids didn’t have an answer for many reasons which had been drilled into their minds from a young age. All children have a dream, but sadly these were minimized with reoccurring comments made to them from those who surround them on a daily basis. In an impoverished area, such as the one the school was in, in Lucknow, it can be devastating to the family if the child is born with a disability, turning them into more if a liability instead of a source of hope. While parents always want best for their child, it can be incredibly difficult to assist your own son or daughter that needs special attention to reach their goals when you can barely afford to put food on the table.  Those who wanted to become astronauts, surgeons, lawyers, are automatically written off, as there is no one like them in those positions publicly, little to no help getting an education, and a general sense of inferiority. This leads them to accept the idea that they will be limited to small odd jobs, or work on farms, just as their families have been, further continuing unable to break out of poverty.

This makes Jyoti a rare case, her bravery in her comment in front of the other students led CFTW to provide her with her own sewing machine, some tools, cloths, and some educational books to help her get started. We hope with her courage to be vocal and work towards her goals, the other students in the school can become inspired and realize they too have a chance, despite what the general public may say. The connection between poverty and disability remains strongly correlated in the country, with poverty often leading to an increased amount of disability, and in return disability continuing poverty in a cyclical manner (Rao, 2009). We here at CFTW believe that children such as Jyoti, are the cure for this issue.

Illustration 1. Ben Hur searches for his relatives who live in leper colony caves from the 1959 epic movie Ben-Hur.

I recall sailing aboard HMCS Saskatchewan, a Canadian Destroyer Escort in 1962, on our way to the Panama Canal.  The Canal area is densely forested.  The commander informed us of a leper colony situated nearby in a forested area ashore.  I peered across the water, hoping to catch a glimpse of a resident of this Palo Seco leper colony. My imagination soared as we sailed past.  

“Who were these poor souls, and what about their families?” I thought.  I wonder if 2000 years ago, did parents with children and other family members who mysteriously developed unknown skin discoloration or blemishes get to see their loved ones after authorities sent them to a  colony? I  reflect now that my mouth must have been agape as I gazed toward the leprosarium.  It has since closed in 1979, not long after we sailed past.  This colony had developed a unique currency.  The coins used by the past residents are collected today.

Illustration 2. Flying over the Palo Seco leper colony in 1979.  The colony closed the same year.

Who hears or thinks of leprosy today?  Most are surprised when I tell them that I sailed past a colony in Panama.  Many in developed countries cannot imagine that this disease exists in 2020.  I assure you it does!

In 2018, the World Health Organization (WHO) reported 208,618 cases of leprosy worldwide in 159 countries.  The WHO states, “India is the top country by leprosy cases in the world.  As of 2018, leprosy cases in India were 120,334, that accounts for 57.69% of the world’s leprosy cases.  The top 5 countries (others are Brazil, Indonesia, Bangladesh, and Democratic Republic of the Congo) account for 82.96% of total cases.” 

They see a prevalence of reported cases of the disease is very slowly decreasing,  although the decline is disappointing.

If one compares these numbers to measles for the same period, measles had a worldwide outbreak of 353 236.  Measles, in comparison to Hansen’s Disease (leprosy), is much more contagious.  Nine out of ten persons exposed will contact measles with an incubation period of ten to fourteen days. Leprosy is extremely hard to detect.  The Mycobacterium leprae bacillus is not easy to grow in culture, making confirmation of the disease tricky.  According to The WHO Fact Sheet, it states that the incubation period for leprosy averages five years, but “Symptoms may occur within one year but can also take as long as 20 years or even more to occur”.

It is unbelievable that a disease that can be cured by a two-year course of antibiotics is still affecting hundreds of thousands of people.

I have personally encountered 50 persons with leprosy in India; I met two ladies in Ludhiana, another I treated in New Delhi named Bilasi. In November 2019, I had the fortune to meet 47 living in a Leprosarium in Lucknow run by the Missionary Sisters of Charity.  

Bilasi came for treatment in New Delhi.  She patiently waited as others sought care.  She had neck and left shoulder pain.

Illustration 3. & 4. Bilasi waited patiently and is treated when her turn arrives.

Jesus cured ten lepers, and only one came back to thank him.  Bilasi, a beautiful woman with two fabulous children, came back to give thanks.  Her best friend also has leprosy.  Bilasi brought her friend’s daughter in addition to her children with her to meet me.  Sr. Lavina, a Holy Cross Sister in New Delhi on Sept 27, 2020.  She said, “I just now spoke to Bilasi.  Her wounds have increased”.  

On Oct 2, I received an email from His Excellency, Gerald John Mathias, Bishop of Lucknow, who said, “Thanks for your goodwill to help the needy…with renewed thanks…”  I can do nothing without your positive response of Love to those who suffer.  It is you to whom we must direct the Bishop’s words, “with renewed thanks.”  It belongs to you.  

Let us do what we can this Christmas to create a meaningful impact on all those who suffer.  We cannot all be at their side, but you can provide a meaningful personal gift to each of those who suffer. 

Illustration 5. Bilasi and her two children to my right.  Her best friend’s daughter to the far left.

The project is to raise funds for each of the leper victims to provide a gift to them for Christmas.  The plan is to give each one a warm comforter for their bed, hat, socks, a shawl for the cold winter months.  None of them have heating in their residence, and it gets below freezing level in Northern India in Winter.  We will purchase all items in India.  Give a $50 gift to a leper, please.

Donate Please! 

 Image taken from Ben-Hur  1959 Movie starring Charlton Heston, directed by William Wyler, and produced by Sam Zimbalist

 Areal of the Palo Seco Leprosarium.  From the Child, Jack Collection.  American University Library. Archives and Special Collections.

 Leprosy reported cases, Knoema, World Data Atlas Topics Health Communicable Diseases

 World Health Organization (WHO) Leprosy Fact Sheet 2020:  https://www.who.int/news-room/fact-sheets/detail/leprosy.

 CDC Centers for Disease Control and Prevention 2020:  https://www.cdc.gov/globalhealth/measles/globalmeaslesoutbreaks.htm 

 World Health Organization (WHO) Leprosy Fact Sheet 2020:  https://www.who.int/news-room/fact-sheets/detail/leprosy.