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). PwD comprise at least 2% of the Indian population (Census, 2011). Despite improvements to accessibility in India, PwD and their families still face negative social, physical, and financial repercussions (Richard, 2014). In parts of northern India, these hardships may be heightened because of limited resources, lack of qualified personnel, and challenges in access assistance or mobility due to the geography of the area (Dring, 2016).

While stigma and discrimination against PwD cannot be fixed overnight, there has been increased global sensitivity to the needs of marginalized people. In fact, the UN Sustainable Development goals specifically point to targets for human rights including Reduced Inequalities, Quality Education, and Good Health and Well-Being. Reduced inequalities means addressing challenges, taboos and stigmas associated with PwD. These barriers worsen financial and social inequalities. Similarly, access to quality education, good healthcare and well-being because ultimately we are trying to improve the living conditions of PwD and their families and caregivers in Kamand Valley.

Toward this end, Enabling Women of Kamand (EWOK), is interested in contributing to the well-being of women and their families in a small community in the heart of Himachal Pradesh. As the well-being of a PwD is highly dependent on the support and stability given by their caregivers, it is vital that the needs and requirements of PwD are clearly expressed and addressed in communities (Richard 2014).

To meet this goal, we assessed perceptions of PwD in the Kamand region. We also 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 and to give impetus to programs promoting greater understanding and independence to those affected by disability.

In this section, we discuss the political and social limitations that PwD face in Himachal Pradesh. We also explore challenges faced by PwD in regards to access to support, to resources, and to rights. Finally, we describe the vision and mission of Enabling Women of Kamand (EWOK) guided us through our research process.

In a blog titled “Dear non-disabled people, we are human beings and citizens too,” Nidhi Goyal, an Indian standup comedian and disability advocate who is a PwD herself, reflects about access to rights for PwD. We are born with “coats of stigma, prejudice, and misconceptions”, says Goyal (Goyal, 2018). The reason for these attitudes can be that social perception towards PwD are outdated, and are often highly influenced by cultural and religious beliefs (Edwardraj et al., 2010).

A life of being denied access takes a toll that impacts employment and future with independence. “Imagine someone not believing when you say ‘I can do this’,” says Goyal as she talks about PwD seeking employment and how it can often end with the response of rejection despite the qualifications they may have. Progress has been made, although positive stories are less common. For example, Haley Moss is a lawyer who has autism and works in a top law firm. Joseph Zumpano, who offered Moss the job, says he wanted to show that “if you align people to their strengths then given the chance, they excel” (Erblat, 2019).

In addition to the considerable challenges in employment or mobility, access to basic comforts such as buying clothes can be hard for PwD. The limited offering seems to imply, “Why do you want new clothes? Why would you want to dress up?” (goyal, 2018). PwD are denied even the right to “feel beautiful”(Goyal, 2018). Not only the appearance of clothing but also the functionality of the clothing can be a big challenge in PwD lives. It can be difficult for some PwD to use buttons or zippers. They may require help, making it almost impossible to have independence. Although adaptive fashion, clothing that specifically focuses on people with physical disabilities or impaired movement, is still limited in India, some mainstream designers such as Tommy Hilfiger as well as a handful of Indian designers have been launching disabled-friendly clothing(Dhar, 2019).

With rights comes wellbeing, and the opportunity for PwD to have the quality of life others would expect. Social ignorance can discourage PwD from something that is considered normal for a non-disabled person, such as seeking work, marriage, or travel. PwD are stared at when they are in public, lending little privacy. When it comes to dating and marriage, they are seen as an “unfit” partner who will not be a good future parent. When they are with companions, they are often ignored and the conversation are directed toward the companion (Goyal, 2018). Whether in terms of accessibility or discrimination, PwD are systematically denied certain human rights.

The perceptions of PwD are being changed through progressive movements of social changemakers and entrepreneurs. From a global health point of view, the UN Sustainable Development goals call for support for healthcare access and affordability for all. But other changemakers are setting up locally-based options for PwD to succeed in their own community. Durell Coleman is a social entrepreneur who is the creator of a design firm called DC design. DC design focuses on Human-Centered Design while eliminating social challenges that are faced by marginalized people. One example of his social entrepreneurship can be seen in the summer program, Design the Future, that he started for high school students. The students implement the concept of DC design while focusing on daily problems faced by people with physical disabilities (Design The Future, n.d.).

Positive social change initiatives with regard to disabilities is active across India. For example, EnAble India is an NGO that supports PwD in training and employment. They have received recognition for their work such as Special Consultative Status by the United Nations Department of Economic and Social Affairs (DESA), as well as a National Award from the president of India. Some stories of people benefiting from this NGO include Cornelius who attended a ten month Employment training with EnAble India, which focused on life skills, computers, English and mobility. He says, “I am now employed at Rediff in the spam operations team. I am the first visually impaired employee in the company and the only family member to have got a degree and to be employed in a well-paid job” (EnAble India, 2017). There are more opportunities for and better awareness of PwD because of organizations like EnAble India.

The Kamand Valley is a medium sized collection of villages located in Mandi District in the heart of mountainous Himachal Pradesh. It is a generally rural area, but experiencing new growth with the development of IIT Mandi in the region. The communities are traditionally agricultural, but the university has brought some additional service sector employment (Census Population, 2011).

Set in this valley, Enabling Women of Kamand(EWOK) (offices featured in figure X) state that their mission is “To enable the women of Kamand Valley in ways to better utilize their skills for economic gains and in general to improve quality of life” (EWOK - About Us). The NGO also makes clear that with the introduction of IIT Mandi to the Kamand Valley, there is much more potential for change that should be fully utilized by the women of the area (EWOK - About Us). When it comes to care-taking, women in the family are often obligated to take this role and do not have time of their own or to financially support their dependents. EWOK is positioned to bring women more skill set options to better provide for themselves and the community (Menon, personal conversation, March 14, 2019). In order to understand the needs and requirements of those affected by disabilities and mitigate some of the problems and difficulties faced by PwD, it is important to understand the stories and personal experiences of those affected directly.

In sum, we identified several points that informed our framing of the problem. First, when finding inclusive solutions to the problems faced by PwD, it is necessary to take into account site-specific community and support systems. Individuals experience disabilities differently depending on their experience with other social constructs, such as gender, caste, region, religion, and so forth. Finally, the geographical, political, and economic climate of the community will play a role in accessibility requirements and constraints that can shape the outlook and futures for PwD.

Here we discuss the strategies used to evaluate the needs and requirements of persons with disabilities (PwD) in Kamand Valley. Towards that goal, our objectives were to:

1. Assess community perceptions of PwD in Kamand Valley
2. Identify limitations faced by PwD and their families
3. Determine the resources available to PwD

These objectives were accomplished through interviews, observations, and surveys of experts, residents, and PwD as outlined in figure below, and then discussed in detail.

Methodological strategies

We interviewed relevant experts to understand their views on the perceptions of PwD in Kamand Valley. Experts included doctors, educators, government officials, and NGOs engaging with or supporting PwD. Based on our preliminary discussions and observations, we designed a survey for the residents of the villages in Kamand Valley. We then interviewed participants, including individuals with disabilities and those who have family members who are PwD, in addition to residents with no relation to PwD. These in-person interviews were approximately 15 minutes in length.

We conducted a baseline assessment of the experiences of the PwD or caregiver by conducting structured interviews related to living with or being a PwD. We used a sample of convenience and snowball sampling to identify approximately twenty participants of PwD and caregivers. Selected participants were shadowed briefly following interviews as a part of an observational study. This allowed us to gain more insight into the limitations that surround their daily life in Kamand Valley.

To help us determine the resources available, we consulted with local experts such as doctors, teachers, and other relevant professionals. Because we wanted to focus on qualitative data analysis, we set up face-to-face unstructured interviews (in-depth interview) that were tailored to each individual so that we were guaranteed to cover the areas of interest. To identify relative experts we used a snowball sampling in which one professional recommends more experts in the field.

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 purpose of the interview was to get accurate answers from PwD themselves while gaining insight into support systems the community provides.

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 the special needs educator working in government schools. Organizations like EWOK help train women by providing them with educational opportunities varying from English classes to learning how to do data entry on Excel. They are also in the process of expanding their support group system to provide a platform where women can openly discuss their hardships without worrying about people’s perceptions. This kind of support is important and welcome. For example, the father of a PwD with cerebral palsy listed support groups as helpful resources along with social opportunities, financial support, and support in special education. At this time, these kinds of resources are in place sporadically, but not available to all.

Chinmaya Organization for Rural Development (CORD) is an NGO in Dharamshala that provides solutions using holistic approaches by looking at the person and the issues surrounding them as a whole rather than simply treating the disability. As government implementations are an issue that cannot be ignored, CORD focuses on providing support groups by helping people “from the community for the community” (N. Paul, personal communication, March 16, 2019). For example, CORD engages 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.

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. 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 Paul, who explained that a disability that is greater than 40% can get a disability certification. A certification can help financially because it makes PwD and their families eligible for stipends every few months. Additionally, certified PwD can get travel passes for public transportation for free. Although these resources are beneficial, Dr. Narendra Paul says “some individuals illegally obtain multiple disability certifications to claim excess benefits” (N. Paul, personal communication, March 16, 2019). This corruption makes it more difficult for individuals with actual needs to access the same benefits.

We interviewed a special needs educator at the primary school of Katuala, Ms. Reema(see figure 5). She discussed the previously mentioned case of the boy with cerebral palsy having received physical therapy from CRC Sundernagar and Zonal Hospital Mandi twice a month. He used to get around by crawling on his four limbs up to the age of 8 or 9, however, we were able to observe that, despite needing some assistance, he is able to walk on both of his legs at the age of 14. Apart from working as a special needs educator at the school, Ms. Reema’s duties also include consultation with parents as well as the teachers who are having trouble working with children with disabilities. She also assists PwD in getting medical certificates and aid from other governmentally sponsored programs. She tries to convince school administrators to intake children with disabilities via admissions. Although she is making an effort to increase the number of children with disabilities at schools, we observed that schools in the region still lack the resources for proper education. Her primary effort is to raise awareness for PwD in the communities and lessen the discrimination they face.

Although the lack of openness made it difficult to assess community perceptions of PwD in Kamand Valley, there were compelling trends in our findings. It seems that there are not open conversations about the challenges PwD face. It appears that talking about PwD may be considered impolite, or a taboo, and that othering and concealment of PwD is common. Nevertheless, those PwD that are integrated into the community are generally well perceived.

Our survey, unfortunately, revealed very little with many declining 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 superstitions, karma, and black magic, some may have declined to answer because there are strong beliefs associated with PwD. When asking community members what they thought their villages’ perceptions of PwD were, we heard more considerate responses, reflecting general understanding of the taboos and stigmas associated with PwD in their society.

Furthering the complexity, there was also clear indication of concealment of PwD in the communities. Othering occurred with almost everyone we interviewed, in the form of separating themselves from PwD. Concealment and isolation were also shown through this obvious social barrier between 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 the non-special education school were well adapted and able to make friends with their peers. Furthermore, we encountered a child with down syndrome and her friends at a local snack shop after school and observed that she was well perceived by the shop owner and the other kids her age.

For children with disabilities, having luck in terms of locally available resources seems to be the primary marker of success. For most, there are few options available. The options 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.

The societal views on PwD also cause issues. 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. The previously discussed idea of othering and concealment of PwD is an example of the negative viewpoints that can stem from these kinds of ideas.

Financial limitations also raise clear discussion points. Many of the PwD we spoke to, one shown in figure 6, receive a monthly stipend from the government, but when this is compared to the amount of time the family spends with the PwD and the fact that many caregivers have to either stop working or work less in order to support their family, this stipend is not enough. 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). While a stipend of 500-1000 rupees (~7.50-15 USD) a month can be helpful to families, it is clear from our research that it is not enough to fully compensate for the complex needs of families facing a variety of challenges. In any case, the ripple effect for caregiving comes at a cost for lost income or work time amongst other family members. 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.

The final suggestion targets the goal of reducing inequalities. It fits the specific target of creating economic inclusion for people regardless of disability. There are a variety of recommendations that can help to reach this target. The first recommendation would be to sponsor PwD and caregivers for training towards employable skills that are provided by EWOK. While EWOK provides affordable trainings, it would be more utilized by PwD and caregivers if it were a resource available to them for a lower cost. These trainings would allow for the improvement of the financial situations of PwD by enabling them to work in more sustainable labor where they would be able to provide for their families while not having to work as much.

In the case of unskilled labor, there could be potential improvement through an organization structured so that it can 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 interested in working fewer hours in order to cover other responsibilities. The employment of PwD and caregivers to improve accessibility of the area would be a dual-pronged approach where one organization promoting one idea is able to improve lives of PwD in multiple ways. This method of improvement provides not only financial support but also improves the area so that PwD can more easily participate equally in the community.

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. Through this increased understanding, the wellbeing of both PwD and caregivers can be greatly improved by making the resources clear and communicating the stigma surrounding disability in Kamand Valley. With more clearly understood needs and resources caregivers will be able to fully utilize these resources in order to better their own quality of life. 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.

To that end, 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. Our recommendations and research can be a strong foundations for all future work for PwD and caregivers in Kamand Valley.

We would like to thank the following individuals for their assistance and guidance throughout our study:

• Our mentors, Dr. Priscilla Gonsalves, Ms. Sandhya Menon, Dr. Ingrid Shockey, and

Dr. Gbetonmasse Sommasse for their insight and guidance on our project

• EWOK for their sponsorship of our project
• Vandana Thakur for helping us with translations in the field
• Our teaching assistant Harsh Arora
• All of our interviewees for sharing their stories with us

The reports in this book represent the work of WPI and IIT Mandi undergraduate students. For more information and to see the complete report, you may search using keywords or author at https://digitalcommons.wpi.edu/iqp/ or http://www.iitmandi.ac.in/istp/.