Helen Mclaren is an Australian Volunteer in the role of a Program Development Officer, at the Independent Living Center (CIL-Pokhara) under the Australian Volunteers Program (AVP), an Australian Government initiative managed by AVI.
Helen Mclaren is supporting CIL-Pokhara in enhancing capacity of the Secretariat to improve planning systems and processes and with staff to strengthen their organisational development skills and improve their project management systems.
It is hoped that this assignment will increase the capacity of CIL to undertake their work and will lead to improved access to services for people with disabilities. It will support CIL to increase awareness of the rights of people with disabilities to live independently and with dignity in their chosen communities.
Helen shares a story in her own words:
Story about disability – Beliefs about disability
“How a bud weathers before blossoming - a vivid example of how barriers lead to premature death of people with disability”.
While there have been many advances for people with disability in Nepal, including the ratification of the Convention on the Rights of Persons with Disability (CRPD) in 2010; development of an inclusive Constitution in 2015 and passing of the Disability Rights Act in 2017, the beliefs and attitudes towards people with disability can still discriminate.
This story is a true account of Geetu*, a girl with a disability. (*This is not the girl’s actual name. I changed it to “Geetu”, which means ‘someone who is very special’):
“When Geetu was 11 years old, a few years ago, her school principal said that she could no longer attend school. Geetu uses a wheelchair due to a congenital spinal cord injury, and also uses continence aids (nappies) due to problems with bladder control. Since there were no ramps or lifts at the school, and her class was moving to the first floor of the building, the school’s solution was for Geetu to stay at home (with no home-school program) instead of continuing her education.
Her mother contacted some disability advocates she knew, and they negotiated with the school to move her class to the ground floor so that Geetu could still go to school. Geetu was so happy and relieved because when she grew up she wanted to be a doctor. However, Geetu’s family then unexpectedly said that they, in fact, did not want her to go back to school. The disability advocates tried to talk with her family about their decision – that Geetu has a right to an education, that with support she could finish school, go to university if she wanted to and actually get a job and be independent- just like anyone else without a disability.
Nevertheless, Geetu’s family was adamant that she should stay at home. (Such decisions are common place in Nepal: disability is often regarded as a curse, as contagious, and as something that brings shame on the family, and should be hidden, particularly in certain castes).
Devastated, knowing that Geetu would just be sitting at home all day, the disability advocates tried to include her in different activities they were running with other people with disabilities. However, Geetu’s family consistently refused these offers, for years. Geetu rarely left the house or spent time with her peers. Sometimes she went down the street with her grandparents, but apart from this, she mostly stayed in her room on the first floor of her house, watching the world happen in front of her, without her.
Then, about a month ago, Geetu’s family called the disability advocates in distress, indicating that Geetu had a severe urinary tract infection (UTI) requiring hospitalization. The family couldn’t afford to pay for the medication required as well as costs for her hospital stay. The advocates wrote a letter to the hospital, and delivered it personally to the head of the hospital- they were able to negotiate for the fees to be waived, and Geetu’s family were very grateful for this.
When the disability advocates visited Geetu in hospital, by that time she had been admitted to the Intensive Care Unit (ICU) and put on a ventilator- the infection had spread to her kidneys. The advocates were visibly distraught when they saw Geetu – she had changed so much and looked so weak.
A few days later, Geetu’s family called the disability advocates to let them know that Geetu had died during the night. Funerals occur the day after a person has died in Nepal, so several advocates went to the temple to pay their respects. When they arrived, there were around 100-150 people already there: praying, crying, standing and staring at the ground.
Geetu’s body was in an open cement room surrounded by steps, wrapped in a white sheet and adorned with flowers. The disability advocates had to be carried in because there were no ramps and they also used wheelchairs. One of the disability advocates unexpectedly started speaking very strongly towards the people there, through tears. Everyone else was silent, and the advocate spoke for several minutes – about how people with disabilities have a right to go to school, to be a part of the community, and that others should not be ashamed of them. Some of the crowd hung their heads as they also cried; others just looked incredulously at the advocate while she spoke.
The disability advocates later said that Geetu, a girl with such promise, who just happened to have a disability, died because she had nothing to live for.