Group 7: Overcoming the stigma in PwDs and their Family

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Social Sustainability & Design

9 min readFeb 17, 2018

Design workshop, facilitated by Srishti Institute of Art, Design, and Technology.

The focus of this workshop is to Envision, design, and communicates a sustainable service system for People with Disabilities(PwD).

In a group of 6 people — Bhumika Tyagi, Jugneet Kaur Pali, Priyanka Nagpal, Rupali Borse, Soumyo Das (IIITB) and Ashish Pandey (IIITB) we are trying to understand the gaps and challenges in the lives of the people with disabilities. Our aim is to envision service & experience ideas and develop them as concepts through iterative sketching in multi-media.

Graphic Representation of the Research Process

Choosing the door

We often focus on the disabilities of a person rather than their abilities and make assumptions on those disabilities that the person is not capable of doing anything. Everything a person with disability does,is measured on the scale of his/her disability, we most of the time forget that even an abled person could have many inabilities within himself/herself. Some people find solutions to their inabilities some don’t and sometimes pointing out only the in-capabilities can lead to various stigmas that can hamper the empowerment and betterment of the PwD. These stigmas are the biggest obstacles in the path of learning and sustaining and are often neglected. Our research made us realize that, while tackling a problem, we often start studying it from the phase of it coming to light. We overlook the amount of work it takes to come out of the darkness.

The work, often, is a result of the negative emotions a person is subjected to, from society.

• Stigma does not come from within.

• It is often a product of our cultural experiences.

• Creates a mentality of disgust and pity.

While solving a problem, it is important to not only understand the basics, but also, to find out how the problem is being defined in the first place.

Stigma plays a huge role in defining Pwd as ‘people with in-capabilities’. It is, most of the time, in unnecessary excess.

Only when the term ‘disability’ will cease to be equated to people having ‘in-capabilities’, and will it start to mean people having ‘different capabilities’, will it be possible to move on to the next door.

While the person might have lost out on a part of his/her physical prowess, the person is not disable in the avenues of mental and psychological strength. It is therefore important to eradicate stigma, to harness and uplift one’s innate inner strengths. This is the first step towards a society inclusive of the differently abled and hence choosing the first door: Overcoming Stigma (getting out of the house) from the journey of a person with disability towards livelihood, was our first choice.

Various Doors for Intervention: From Enable India

Stigma and Disability

Disability is not just in the person, it is in the surrounding system that doesn’t cater to the specific needs. The systems majorly focus on the needs of abled person and leaving other marginalized group such as person with disability neglected through the process. The inability of a person to cope with such surroundings makes the disability visible and prominent that set it apart from the others and makes situations pitiful. It is the surrounding that is unable to accept and embrace the disability and making that person difficult to come out of this state.

Mapping out challenges related to stigma

As a group we tried to understand what these problems could be and where it stems from. Mapping some of the systems around with connected circle diagram helped us see the connections between them.

Starting with empowering tools that can include therapy, be self-sufficient, independent and improve social skills.
Educational systems have a huge responsibility of changing the approach of abled and disabled kids/teens to look at each other and the world.
Technical support from apps and websites help to empower the person and connect with others.
Extended support can come in the form of physical objects and equipment that are essential for a person with disability. And to ease the efforts infrastructure has a major role to play providing necessary adjustments in architecture and transportation.
Above factors affect on the day to day life of a person and personal care, grooming has major impact on how that personwith disability is feeling from within.
With all points mentioned above formal and informal support is the main factor that helps shape the life of any person with disability. May it be support from family and friends or as formal as from a NGO or a support group. They all are connected to each other in some or the other way and contributes to each other and form multiple system that is sometime supportive or not very useful. As a conclusion these factors hamper their stigma and betterment.

We mapped three service systems that help in overcoming stigma’s. An App, An Adaptive Clothing line and a NGO and tried to pin point the loopholes that maybe in their system.

Alone, Low on self-esteem, feeling of worthlessness, anger, isolation, ashamed, frustrated, incompetent are such feelings that foster in a person with disability because of the situations the person has faced. The challenge of overcoming all these emotions and mental states are not only faced by the person with disability but their family as well. The stigma related to the disability affects both parents/spouse and the person itself with disability.

Being a part of Indian society that has influences from history, culture and values and build an image of ideal person who is referred as a role model to look at. Certainly mythology or superstition does not always do this in a positive manner. Often characters are shown with the negative shade and emphasize on their disability. Movies being the next fictional section, the leading heroes or heroines are dependent on a miracle/ miraculous situation to reach the ideal state. Taking that strong approach lead to seeing a person with disability with pity and sympathy and not considering as efficient as abled. Some people take advantage of this state offering unethical behavior, bulling and victim of abuse. Mostly people with disability are connected with poor jobs that are not really sufficient to have a sufficient sources and extreme other end of this is begging as the only livelihood option and sometimes forced to do so. Being aware about the options that are around and availing them is a big challenge for people with disability.

Abling the inabled with Enable India

A major part of this workshop is collaborating with Enable India, Bangalore. EnAble India is a non-profit organization working for the economic independence and dignity of persons with disability; founded in the year 1999 by IT professionals, Shanti Raghavan and Dipesh Sutariya. They work with 11 disabilities and work in the favor of impacting their livelihood. They do that by training PwDs for employment and making them independent. Each person is catered differently according to their abilities and inabilities and trained. Their motto is that they believe “persons with disability engaged in livelihoods are important to the growth of the economy. The solutions and models of inclusion built for persons with disability benefit all sections of society.”

This session with EnAble India was very enlightening for us. As this is an unknown territory for us, none of us have ever worked with people with disabilities or have had much interaction with them, we don’t know some basics one might require to keep in mind when creating for them.

Sympathy is the first emotion that comes to mind when one sees a PwD because we only see the disability that he/she may have. We start comparing it to us and think this person is missing so much in life. But in the session Julien made us realize that just because one is unable to do something the way we are used to doesn’t make them incapable. “Seeing the disability is very natural but seeing the solution may require a little more effort from your part.” All human beings may have inabilities to do something, we can’t fly therefore we came up with aeroplanes to suffice our inability. Similarly, there is always scope to come up with an alternative method for a person with disability for their inability, it is just a matter of being creative. The biggest inability that is in everyone regardless if they are able or PwD is the inability of the mind. He also said that as sympathy may be the first emotion, it is not an unacceptable emotion as long as you don’t let it overpower you. But what one should really feel is empathy, the ability to understand and share the feelings of another. The session further extended to him sharing personal as well as other stories of others who have benefited by EnAble India. It gave us a more clear picture of the context.

Insights from the session

One of the major insight that we found in this session was by Neha, she said, “it takes an outsider to talk about opportunities for the person with disability because the stigma present in parents makes it difficult for them to see another way out for their kids and most of the time it gets very late.” Therefore the stigma present in parents may even be blocking the opportunities present for their kids. And by late she meant that most of them get useful help when they reach their late twenties whereas if they had got it earlier in life it would have been easier for them to adapt.

Parents of Children with Disabilities

Stigma is a creation of our society. A child with disability is not born with any stigma but becomes a victim of it.

An article in Times of India rightly said, “ It takes a very special parent to raise a special child”. Parents play a major role in the life of a disabled child. They can either help their child to get over stigma or become a target for it.

This makes the job of a parent very difficult. We as a group decided to set this as a premise for our intervention. Our focus is finding ways to help, support and motivate the parents in their journey.

Different articles and parent blogs gave us an insight into the struggles a parent faces while raising their child with disability. How the parents become a victim of Stress, Stigma, Frustration, and anger.