Shiva Acharya is Nepal country lead for the disability inclusive development programme and advocacy advisor at Humanity & Inclusion, an Inclusive Futures partner.

Here, he shares his experience of losing his sight at a young age and the importance of ensuring the rights of people with disabilities are upheld.

Shiva’s story

I lost my sight when I was five or six years old due to a lack of vitamin A. My family couldn’t take me to a doctor, maybe due to ignorance or poverty. Then something tragic happened.

I don’t mind talking about it these days, but I used to hesitate.

Around the time I lost my sight, my family left me outside the door of a hospital run by Christian missionaries, around 16 miles from where I grew up in Pokhara. I was fortunate that the hospital superintendent, who happened to be British, took me in and arranged a sponsor and education. Because of this, I am who I am today.

My schooling was really good, it was integrated so I learned alongside children who had their sight. I had a very good teacher who would teach us about the world and how to find islands, land, oceans and continents on a tactile globe. We had additional classes in the morning and evening to support us if we didn’t understand what was taught during the day. But I suffered bullying from other children who would tease me for being left by my family.

I overcame it with support from my friends and a really good supportive network that I am lucky to have, so I didn’t fall [into the] wrong hands. I didn’t have to worry about clothes and food and went to a good school, but I deserved a warm, loving family, which I definitely didn’t have. That’s something I always wished for.

I had to depend on my friends

In 1999, I graduated school and then went on to study my bachelor’s degree in social anthropology and development studies with classic English literature, but I struggled a lot.

I had no reference materials from the library, no braille books, so I had to depend on friends all the time. They recorded every lesson for me, then I had to write my own notes in braille. They took turns and rooted for me to do well even though they got tired.

Right after my bachelor’s degree I went to Denmark to study globalisation, and NGO and project management. I had fun meeting people from across the world. It helped me see I could do more than I thought I could. I used to tell my friends that I didn’t want to limit myself to becoming a schoolteacher or a musician, because those were the only two jobs offered to blind pople at the time in Nepal.

Once I returned home, I started working at the charity National Disability Upliftment Programme. I’d say to elected officials: “You are creating disability, my impairment is just an issue with my organ but you are limiting my potential.”

I also worked with UN Women and was a trusted interpreter for the UN Special Representative of the Secretary-General in Nepal. I went on to gain a master’s degree in public administration from a Nepali university and a master’s degree in human rights from Roehampton University in London.

Advocating for people with disabilities

Thanks to my visual impairment, my career has been varied. In 2016 I started at Humanity & Inclusion as a project manager working to improve things for prisoners. I worked with some prisoners with mental health problems and we arranged psychiatric visits from a nearby hospital every month.

Prisoners with disabilities were protected by legislation but it was poorly implemented. We advocated that any person with a psychosocial disability should not be kept in isolation unless there is a grave risk to the community, and that police should not be determining this, as they had been. It needed to be determined by health professionals.

We succeeded in changing that and also built a small clinic with essential medicine for mental health issues, created libraries and improved accessibility.

Now I’m an adviser on our disability inclusion programmes here in Nepal. I provide technical advice and training for colleagues to implement our work in inclusive education, sexual and reproductive rights and livelihoods.

Many organisations, including Humanity & Inclusion, work with and for disability issues, but they still need to broaden their understanding of disability and improve ways of working with staff members with disabilities.

Since the COVID-19 pandemic started, I also attend meetings with the UN and government agencies and contribute with a disability inclusion perspective. I’m working on the gender-based violence steering committee. There isn’t enough literature on gender-based violence for people with disabilities, who often experience this violence in a different way, so we’re developing training material to address this in Nepal, both during COVID-19 and beyond.

Fighting for acceptance

Looking back, when I started my career, I applied to work as a civil servant, but there were discussions about whether, as a blind person, I could sit the entrance exams.

I told them I would go to the courts if they didn’t allow me. I sat and passed all three exams but when I attended the interview, one of the commissioners told me not to work for the government because there are too many people who might make me sign something wrongfully and implicate me in wrongdoing.

I had no proof of the conversation to show a lawyer, but I took the issue to the Nepali Association of the Blind and some time later, I applied for a child right protection officer role at the National Human Rights Commission, which officially apologised for rejecting to appoint me. Slowly, after three years of continuous struggle and campaigning, the government agreed that there should be some reserved places for people with disabilities.

It’s something I started and I will always feel happy about. It’s a massive achievement, not just for me personally, but for us all.

I hope that real inclusion will happen sometime in the future.