Group 3: Overcoming Stigma
Introduction
As part of Service and Experience Design workshop, I along with my teammates Charley Vincent, Priyanka Joshi, Sanjana Shenoi and Srujana Kamath are working on combating the stigma associated with disability. According to Enable India’s Futures of Livelihood Platform for Persons with Disability Workshop Report
“One of the biggest challenges faced by a PwD during their journey towards livelihood is that at each level a PwD needs to unlock many doors.
It is not that the keys for these locked opportunities do not exist but they exist in silos. There is a need to leverage technology to connect them so that any PwD can be at par with the non disabled population of India.” — Enable India
Overcoming stigma is the first door to unlock in the journey of person with disability towards livelihood. In order for a person with disability to live his or her best life, the stigma and discrimination that oppresses them must be addressed and uprooted.
Much of the literature on disability in India has pointed that disability is perceived either as punishment for sins in the past lives of the PWD, or the wrongdoings of their parents. Some people believe that presence of PWD may be inauspicious for certain celebrations such as weddings.
“In our village people used to think that disability is a curse incurred through an earlier generation’s wrongdoing. I myself believed in those ideas. I used to think that maybe someone in our family must have done something wrong.”
— Sabrina Yasmin, ADD International
Research
We began our secondary research by identifying the existing players who are in the journey of fight against the stigma of disabilities. Surprisingly though we could find many international service systems, but we couldn’t find any system that solely focuses on overcoming the stigma in India. The existing systems are focusing on many larger issues and indirectly are catering to overcoming stigma. We created a mind map to map some players like NGOs, restaurants, International organizations, special events and their programs and activities which we think help in overcoming stigma.
From our readings we came to know about individual stigma and stigma in the society. We divided the society into immediate family members and community. We mapped the challenges for each type of stigma in a mind map.
Learning
Through our research around existing services which are working towards overcoming stigma and mapping their activities, we were able to identify that these services are scattered and are indirectly helping to reduce the stigma. There is no one service which solely works for the cause. This exercise helped us later to dig deeper and identify the gaps and opportunities in the existing system
Some of the challenges faced by people with disability due to stigma that were brought on notice during our research are
- Denial of rights of mobility, education, employment etc.
- Tendency of family members of people with disability to hide the them at home to avoid embarrassment.
- Certain superstitions and beliefs portray people with disability as disgraceful, leading to isolation and harassment. Also, harmful treatment methods are prevalent like subjecting them to food restrictions.
- Denial of property rights because of the misconception that they are incapable of managing the property.
Talk by Julian and Neha at Enable India
EnABLE India was founded in 1999 by software engineers Shanti Raghavan and Dipesh Sutariya who have known disability at close quarters within their family. (Source www.san-india.org)
Talk By Julian
We were given session on Disability Awareness Program by Julian. Julian said that when Shanti Raghavan’s brother came back to India, though he was exceptionally talented, he faced 70 rejections because companies had no idea how visually impaired work. They had the myth that blind cannot operate computers. That’s when Shanti and Dipesh started teaching computers to the blind. They later realised teaching is not enough, they should also use this skill as a source of living. That’s when they started contacting companies for placement.
Julian said they don’t use the word disability. They use inability. They see inability as a natural phenomenon. He said his inability is his accent as he has Australian accent which most of the Indians don’t understand. Through examples he showed that all of us have inabilities. Like most of us can’t swim. He said
“Inability I have is not the whole picture.
Inability in the mind is much bigger than physical disability.”
He gave the example of Pradeep who is deaf and blind and how through his journey he figured out solution to communicate i.e. sign language with touch. He said finding solutions and finding the abilities is the key thing.
Julian about aspirations of people with disabilities,
“Aspirations of person with disability matters.
Judgement on people’s lives should be based on people’s abilities not inabilities.
Sympathy is fine. It’s an emotion. Perhaps the better emotion would be empathy.”
He concluded the session saying “There are hidden in abilities in all of us. Understand our own inability and look at disability out differently as a mixture of inability and solution.”
Talk by Neha Khandelwal, Designer at Enable India
Neha walked us through the series of doors that need to get unlocked during the journey of a person with disability through examples. She started with the first door -getting out of home and overcoming stigma.
She gave us an example of a 30 year old blind man who did not know that blind could get out of their homes. He was overprotected by his family and did not have enough motivation. Enable India helped him to overcome his fears and motivated him to travel by himself. The question she raised was
“How do you ensure that a person with disability is aware of the opportunity?
It should start with early intervention.”
She mentioned that it is often outsiders who tell the parents of people with disability about such opportunities.
She also mentioned there is stigma around accessibility devices such as cane among the people with disability which discourages them to use them.
She gave us an example of an employed blind person who got 3 awards in the span of 6 months. The person said the employees would clap their hands even for ordinary day to day activity like placing an object on the table. This example shed light on how sympathy is showered at work place and also how people underestimate the abilities of people with disability.
“An employed blind person got 3 awards in the span of 6 months. The person said the employees would clap their hands even for ordinary day to day activity like placing an object on the table.”
Journey mapping through narratives
To understand where we can intervene, we decided to make a journey map of a person with disability starting from birth to the adulthood. We took the narratives we got from secondary research and stories from Enable India to build the journey map. For each narrative we tagged the related broader challenge so that we get direction.
Learning
Through this activity we understood that overcoming stigma starts right from the child is born. It should start with overcoming the stigma around “Disability as a curse” in immediate family members and community members.
Half rural respondents in rural UP and TN believe that disability is always a curse of God
Finding gaps and opportunities of the existing systems working towards overcoming stigma
1. ADD India
In the year 1987, a few persons living in Bangalore and involved in an institution working with people with disabilities, felt the need to work for the rights of persons with disabilities living in rural areas. B.Venkatesh, a person with visual impairment took the lead and went to several villages in Tamil Nadu, Andhra Pradesh and Karnataka, meeting with persons with disability, encouraging and supporting them to come together to form groups.
ADD India works with persons with disabilities in rural areas with community based rehabilitation approach.
Persons with disability formed Sanghas (self-help groups) in villages to advocate for their rights and their inclusion in society. The sanghas provide opportunities for the members to express their opinions and aspirations, assert their rights and to become part of the larger development process.
It provides forum for women and children with disabilities to share their issues and difficulties.
(Source: http://addindia.org/)
Gaps
The sanghas may focus too much on the benefits that they can get from the government and other schemes. The group may pay too much attention to savings and credit programs.
Sanghas exclusive for people with disabilities give an impression that fighting and raising voice for social inclusion is responsibility of the community of the people with disability. There is a lack of community participation in the approach which would bring the abled and the people with disability together in an inclusive environment.
AddIndia does not focus on early intervention.
Also selected candidates are chosen and are trained for employability. This we feel is not socially equitable. Through this they are creating a more competitive environment within the system itself which may backfire destroying the morale of other people with disability.
2. Corporate and educational institutes
Corporate and educational institutes regularly conduct communication and social skills sessions.
Gaps and Opportunities
We have never come across etiquette and manners while communicating with a person with disability in these sessions. It’s the lack of exposure, interaction and dialogue that causes natural reactions of discomfort, caution and fear.
Sessions on how to communicate with a person with disability person in educational institutes and corporate entities would help to reduce the initial discomfort of interaction.
Simple tips on interaction with people with disability are as follows:
Listen to the person with the disability. Do not make assumptions about what the person can or cannot do.
When speaking with a person with a disability, talk directly to that person, not through her companion.
Offer assistance to a person with a disability, but wait until your offer is accepted before you help.
It is okay to feel nervous or uncomfortable around people with disabilities, and it is okay to admit that. When you encounter these situations, think “person” first instead of disability and you will eventually relax.
When meeting a person who is visually impaired, always identify yourself and others who may be with you.
Speak naturally to a hearing impaired person and do not exaggerate or over-emphasize your speech, as this will be easier for the person to “see” the word.
When speaking with a person who uses a wheelchair or crutches, place yourself at eye level in front of the person.
Never pretend to understand the speech of a person with a disability if you are having difficulty doing so
3. Dialogue in the dark — India
Dialogues in the dark is a social enterprise which conducts various events providing unique experiences to visitors. One of their highlights is the exhibitions where blind individuals lead sighted people creating a role reversal.
While we analyzed the experience it provides, we could see that this exhibition gives the participants an experience how blind individuals feel. This helps in creating a sense of empathy and understanding. Also, the role reversal allows the blind person become the guide which may improve the morale of that person. Overall, this exhibition creates a sense of understanding each other and mutual help. It emphasizes on the need of people with disabilities and others to work together and care for each other.
In darkness the blind is more able that the able customer which again is an interesting way to open minds and add new horizons to one’s thinking that we all are disabled in someway or the other. We are just not aware of it because solutions for those inabilities are available.
Gaps and opportunities
It focuses only on a small part of creating awareness and environment.
Does not do cater to the larger concern of stigma.
Such experiential and interactive awareness programs would be more impactful than talks and workshops.
4. Astha
Astha is an organization which works on creating opportunities for interaction between the abled and people with disabilities. This aims at participation of both and enhance their understanding of each other.
One interesting projects they are working on is to make the community for people with disability an active participant in the democratic process. Astha works on creating an environment of free and active participation in elections for people with disabilities. They do activities like awareness, voter’s registration processes and create voting facilities.
This creates a sense of value in the people with disability and helps them know they are important for the nation. Also, the involvement in democratic process help create and be aware of their rights.
(Source: http://astha.in/)
Gaps and Opportunities
Merely involving the people with disability in voting might not necessarily make their voices heard. There needs to be a more focused platform where they can share their concerns and raise opinions.
Inclusive sport events can be organized in schools and communities which will help towards not only physical inclusion but also social inclusion. Such competitions would encourage the people with disability to come out of their homes and not if participate at least be a spectator and get motivated.
5. Enable India
Enable India conducts disability awareness workshops in corporate companies for employees, managers etc. The aim is to:
- Bring new perspective about disability
- Create new awareness among staff in a company
- New insights on hiring and inclusion.
- Awareness about technological solutions.
(Source : http://www.enableindia.org/)
Analysis of the services
Through the workshops the company officials are made more aware of how to go through the hiring process of a person with disability, this awareness of how to deal with candidates with disabilities who come for the interview will help them to empathize with them and in turn minimize the chances of them getting disappointed or even harassed during the interview/hiring process.
Through training and workshops a mutual understanding can be created where abled individuals in the company get to interact with people with disability and develop a new perspective by identifying each person’s abilities and disabilities.
Also many companies are informed about the role of technology in the life of people with disability. This indeed is a very helpful measure taken by enable India to ensure that the needs of people with disability are met in workplaces.
Social equity
These activities and services do help in establishing some kind of social equity by
- Widening the employment opportunities for the people with disability.
- Creating Inclusive work environments and bringing in diversity and acceptance.
- Skill development contributing to equity in status, payment for abled people and people with disability within a company.
- Providing employment opportunities to reduce the discrimination and inequality within family especially among siblings.
Experience for people with disabilities
The interaction opportunity for the people with disability with a larger group of the general public gives them the exposure, confidence. Awareness and information sharing helps remove stigma associated with technological aids (programs like aid stall).
Inclusive environment created in a company makes the people with disability feel more accepted and improves the chances of getting hired.
Opportunities
Enable India can also train the people with disability for game changer jobs. Critical Jobs with high impact and pressure such as MIS executive, medical transcriptionist, etc., are some of the game changer jobs for persons with vision impairment. These are traditionally considered visual jobs which cannot be done by blind. So through training them for such jobs, Enable India is taking a step forward in breaking the stigma and stereotypes that people with disability can do only certain kinds of jobs.
(Source : http://www.enableindia.org/)
Overall the Service provided by Enable India has taken initiatives to create inclusive ecosystem for the people with disability which is a way of fighting against the stigma which is something to look up to for other organizations too working in this field.
6. The Association of People with Disability (APD)
The Association of People with Disability (APD) is a non-profit organization based out of Bangalore, founded in 1959. This organization works to reach out and rehabilitate People with Disability from the underprivileged segment. They aim to create an inclusive society, where people with disabilities are accepted into the mainstream economy and social life.
(Source: http://apd-india.org/)
APD runs a unique program called the Early intervention program which focuses on identifying disability and malnutrition at the initial stages to provide suitable aids and a holistic treatment. They aim at ensuring that children reach their maximum potential in this early years. APD works on creating awareness about the problems associated with disability among the members of the community, medical fraternity and the other stakeholders. APD also pushes for policy intervention to make the program a part of the system. They have a baby screening and follow up program to identify babies with disabilities and malnutrition and continue their screening.
Analyzing this program, early intervention helps the child with disability get support from early stages of life. This is a key aspect in bringing up the child with disability in a positive manner. The baby screening follow ups helps the child to have continued support. Similarly, the awareness and support programs that APD offers to the parents help them bring up their child in a better way.
Talking from a social perspective, the early intervention helps to reduce stigma faced by the child within the family. The follow up makes sure the care and support is sustained for a longer period.
The organization also educates parents about government schemes available. This helps identify opportunities of aid available to them. Similarly, the organization provides referrals to doctors and institutions. On a deeper look, this helps reduce the hesitance the family members have in seeking proper medical treatment for the child with disability.
Gaps
The possibility to measure impact of the awareness programs may be limited.
Also, the service could be better with a system that could check whether proper impact is made on the child’s life in the long run.
System Map
We mapped the existing platforms of how a person with disability can unlock the door of overcoming stigma. We mapped NGOs, Self help groups, DPOs, Inclusive schools, mixed sport events, special events, platforms which provide experiential activities and restaurants. We identified the gaps and opportunities in the system.
Gaps are represented as dotted lines. We identified gap in SHGs and special events as these events do not involve inclusive community participation.
We found opportunities in experiential activities and restaurants where inclusive social environment and participation creates a major impact. We identified game changer jobs in corporate entities as an opportunity. Early intervention medical and support system is an opportunity to overcome stigma at a very early phase.
Intervention
We aim to create an inclusive community where people with disability and abled people come together, interact and support each other by identifying the inabilities and abilities, and together fight the stigma of disability that is prevalent in the society. Our area of focus is a gated community comprising of middle and upper middle class people. We are inspired by meta design and are looking at creation of a platform of collective effort leading to overcoming stigma and empowering people with disability.
We as a team believe that through community participation, people can have a sense of common purpose and can actively participate in identifying needs and work towards finding solutions for overcoming stigma.
