Due to the negative social, physical, and financial repercussions presented to PwD and their families, it is vital that the needs and requirements of PwD are clearly known and addressed in communities. To meet this goal, we assessed perceptions of PwD in the Kamand region. We set out to understand the limitations that are faced by PwD and their families, and we determined the resources available to support PwD. By accomplishing these objectives, we hoped to clarify standards for accessibility in Kamand Valley and to give greater understanding and independence to those affected by disability.
The Rights of Persons with Disabilities Act of 2016 defines persons with disabilities (PwD) as “a person with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders [their] full and effective participation in society equally to others” (Ministry of Law and Justice, 2016). Despite improvements to accessibility in India, PwD and their families still face negative social, physical, and financial repercussions (Richard, 2014).
Initiatives to secure resources, services, or opportunities for PwD, can significantly improve the lives of families. Toward this end, Enabling Women of Kamand Valley (EWOK), is interested in contributing to the well-being of women, including those with PwD dependents, in a small community in the heart of Himachal Pradesh. The well-being of a PwD is highly dependent on the support and stability given by their caregivers (Richard, 2014). Therefore, it is vital that the needs and requirements of PwD are clearly known and addressed in communities.
To meet this goal, we assessed perceptions of PwD in the Kamand region. We set out to understand the limitations that are faced by PwD and their families, and we determined the resources available to support PwD. By accomplishing these objectives, we hoped to clarify standards for accessibility in Kamand Valley and give greater understanding and independence to those affected by disability. Below, we discuss our methods for accomplishing our objectives.
We interviewed relevant experts to understand their views on the perceptions of PwD in Kamand Valley. Based on our preliminary discussions and observations, we designed a survey and conducted in-person interviews with the residents of the villages in Kamand Valley.
We conducted structured interviews with PwD and caregivers to assess their experiences. We used a sample of convenience and snowball sampling to identify participants. Selected participants also walked the team through a sequence of typical scenarios of their daily life experiences as a part of an observational study.
To help us determine the resources available, we consulted with local experts such as doctors, teachers, and other relevant professionals. We set up face-to-face unstructured interviews that were tailored to each individual. Finally, we interviewed PwD and asked them to identify what resources were available and beneficial services that operate on their behalf or offer support in the region.
The result of our interviews and discussions with PwD and other community members are presented here by objective.
Our interview strategy with community members did not generate clear answers on questions about their opinions towards PwD. We sensed reluctance when asked to talk about their own opinion, but interviewees opened up when asked about their thoughts on other community members’ perceptions of PwD.
In an interview with a special needs educator, we learned that when alienation is taken to an extreme, concealment may also happen within communities. For example, we heard of a nine year old boy with 90% mental retardation that is kept confined to his house. Although the special educator is trying to counsel his family, they feel their child is cursed and do not want to be further judged by their community.
While some of the stories we found were quite demeaning, we also observed PwD at school and noticed that the other children were very accepting and excited to play with the students with disabilities. The students with disabilities also confirmed that they had an easy time making friends.
The findings of our fieldwork revealed educational, social, economic and physical geographical constraints.
A commonly identified limitation is that of educational opportunities, which was evident through interviewing a special needs educator located at a government school in Kathindi. She stated that she was the special needs expert for 5 other area schools and that her job entailed of counseling students, parents, and teachers as well as baseline education work. Other government schools had a few special needs students, but no one knowledgeable on special needs education to work with them.
Another key limitation for PwD was a system of social beliefs and perceptions about the cause or meaning of disabilities in families. One woman said, “I believe my hearing impairment developed because I was too shy,” she further noted, “I pray to god every day that I will be able to hear as I used to” (personal communication, April 6, 2019). Thoughts like this can contribute to negative societal perceptions.
We recorded many stories of financial limitations to PwD and their families. In discussions with caregivers, we have heard that financial resources can be scarce with one man who was caring for his two brothers saying “my very limited financial resources are almost completely consumed by basic amenities” (personal communication, April 4, 2019). One father also admitted to having stopped working in order to support his son’s education leading to poor financial standing.
Finally, the difficult landscape of the Kamand Valley is another limitation for those with physical disabilities as seen in figure 4. According to a school administrator, children with physical disabilities are often kept at home rather than sent to school, as they are not capable of walking to school. This landscape could prevent a PwD from being able to reach the place where they need to go.
There are ongoing efforts in providing existing resources to PwD such as government stipends for PwD with disability certification, support groups held through NGOs, and a special needs educator working in government schools.
Organizations like EWOK help train women by providing them with educational classes. They are also in the process of expanding their support group system. Chinmaya Organisation for Rural Development (CORD) is an NGO in Dharamshala. CORD provides many resources, including engaging local children with disabilities in domestic activities, such as cooking, cleaning, and other tasks so that they can gain more independence as they grow up. At this time, these kinds of resources are in place, but not available to PwD and caregivers in Kamand Valley.
Support for children with disabilities can be seen in local hospitals where they provide anemia acid tablets for children under the age of 15 with red blood cell deficiency. Surgeries and prosthetics are also provided for free to some children in need. CRC Sundernagar and Zonal Hospital in Mandi provide physical therapy. The Katindi Hospital also helps PwD rehabilitate through medical and vocational training so that they have better living standards. We interviewed a rehabilitation expert, Dr. Narendra Singh, who explained that a disability greater than 40% can get a disability certification, which can qualify PwDs for a monthly stipend and free bus passes in Himachal Pradesh.
It seems that there are not open conversations about the challenges PwD face, and alienating and concealment of PwD is common. Nevertheless, those PwD that are integrated into the community are generally well perceived. We also observed educational, financial, and physical limitations, which led to many inequalities.
Many individuals declined to answer personal questions. Perhaps there is no certain way to speculate about PwD or perhaps residents are protecting PwD by choosing not to discuss their problems. Given some evidence of karma, and black magic, some may have declined to answer because there are strong beliefs associated with PwD. These perceptions related to black magic and karma enforce the idea that PwD are bad and should not necessarily be helped or incorporated into society. Other answers reflected general understanding of the taboos and stigmas associated with PwD in their society. Concealment and isolation were also shown through this obvious social barrier of the PwD and the community.
At the same time, there were some signs of a surprising openness towards them, specifically amongst the children with disabilities. Both by observation and discussion with the children with disabilities at the Katindi Government School, we confirmed that the children integrated into a non-special education school were well adapted and able to make friends with their peers.
For children with disabilities, having luck in terms of locally available resources seems to be the primary marker of success. The options, for most, are either to potentially travel a long way to go to a school with a special educator, have your child sent to a special school where they may be separated from other students, or have them sent to a government school where they could potentially be rejected because the school does not want to work with PwD. None of these options are optimal which can raise many long-term and compounding problems for a child with disabilities gaining a full education.
Financial limitations also raise clear discussion points. Although the minimum wage in Himachal Pradesh differs depending on the field of work, the minimum wage for an agriculture job, which is typical in Kamand Valley, is 225 rupees per day (Himachal Pradesh Labor and Employment Department, 2018). With this information, the common monthly stipend of 500-1000 rupees is clearly not enough. In cases where more than one family member faces disability, there can be insurmountable implications for a family to give support.
Though landscape issues were not heavily discussed, there were clear problems seen. Not going out into the community and struggling to do so has been mentioned in multiple interviews and there could be a clear correlation between these points.
We have a variety of recommendations related to the support and improvement of the quality of life for PwD in Kamand Valley.
Our first recommendation relates to the idea of emotional support groups and the ability to share the hardships that can be related to being a PwD or caring for one. They would bring PwD or caregivers together so they can share their stories and how they may deal with certain hardships. EWOK already has an established infrastructure in the community so they would be able to potentially host a support group of this form. In our research, we have seen a variety of people who stated that a support group is a resource they would utilize if it were available to them.
First, a “medical camp” program could be implemented where PwD could be taken to the Zonal Hospital in Mandi and have dedicated doctors who would provide them with any necessary certification or assistance. The validity of this suggestion was enforced by an interview with a local man whose brother is a doctor and claimed that it was quite easy for him to access resources for his differently-abled wife.
Another medical support need would be access to inexpensive assistive technology. Though affordable assistive technology is not available in Kamand Valley, it could be brought there by bringing these discounting programs to the area or bringing people to these programs.
As mentioned earlier, there is a clear lack of educators who are trained to work with PwD, with only one educator for the entire Kamand Valley region. A good way to improve this situation would be to train both educators and administrators so that they can better work with students with disabilities. This training could potentially be done by the trained educator for the region or an outside resource could be brought in.
The final suggestion targets the goal of reducing inequalities with a variety of recommendations regarding employment training and opportunities. The first recommendation would be sponsoring PwD and caregivers to attend EWOK trainings. These trainings would allow for the improvement of the financial situations of PwD by enabling them to work in more skilled labor.
In the case of unskilled labor, there could be potential improvement through an organization structured to improve area accessibility. This organization could also offer employment to caregivers and PwD who are still able to do physical labor. The development of an organization like this would also allow for flexible work times of PwD and caregivers.
Due to the variety of challenges presented to PwD by the environment, culture, and political climate, this study is important to understanding the complexities of the area in relation to disabilities. We have assessed perceptions of PwD through a variety of interviews and surveys and found limitations through discussions with PwD and their caregivers. The final aspect that we have worked on involved communicating with officials in the community about the resources that are available to PwD. Our study has given a better understanding of PwD in Kamand Valley as well as how communities function in relation to them. Our sponsor EWOK hopes to use the outcome of this study to improve lives of caregivers and PwD so that they too can work to empower themselves.
This study can be used to further promote the implementation of our recommendations by either already existing organizations or by the founding of new organizations. These ideas could be used by EWOK to begin work with PwD and caregivers. Some of our recommendations could also be implemented as government initiatives to improve the quality of life for PwD and caregivers.