September 2013
asia
A New Vision How can social entrepreneurs develop inclusive solutions for the differently abled?
Contents
fc | CONTENTS
Wireless Currency, Endless Possibility
01
Tasmia Rahman & Paroma Afsara Husain
Four Innovation Trends That Could Change The Way We Design Roads In 2020
03
Meera Vijayann
Challenging The Label
05
Reshma Valliappan
Who’s Disability Is It Anyway?
07
Supriya Sankaran
Power To You
09
Sugandha Sukutraj
It’s Time To Pin Up!
11
Kalpana Viswanath
Reach Out, The Right Way
13
Jo Chopra
Re-thinking Rights
15
Amba Salelkar
A Different Vision
17
Dipendra Manocha
Coming Of Age
19
Aparna Das
Building Bridges
21
Dr. Darin Gunesekera
Changing Perspective
23
Ashoka Thailand Staff
Deepening Community: Finding Joy Together In Chaotic Times
25
Paul Born
Editorial VISHNU SWAMINATHAN MEERA VIJAYANN Contributors Tasmia Rahman Paroma Afsara Husain Meera Vijayann Reshma Valliappan Supriya Sankaran Sugandha Sukutraj Kalpana Viswanath Jo Chopra Amba Salelkar Dipendra Manocha Aparna Das Dr. Darin Gunesekera Ashoka Thailand Staff Paul Born Design SAMYAK JAIN Talk to us mvijayann@ashoka.org Website www.indiaashoka.org Address 54, 1st Cross, Domlur Layout Bangalore 560071 India Telephone 080-4274-5777 Disclaimer The views and comments mentioned in the articles of fellowconnect are that of the respective authors and do not reflect the position of ashoka on these issues.
i | FELLOWCONNECT SEPTEMBER 2014
Photo courtesy: http://www.brammer.com/
Photo courtesy: flibbertygibberty.files.wordpress.com
fc | EDITORIAL
D
We must imagine a world where disability is forgotten, a world where normalcy is all encompassing, a world where discrimination is unimaginable, a world where acceptance is the norm and inclusion is the way ...
Dear Ashoka Fellows, For a long time, the term ‘disability’ was understood to be a past sin someone was meant to suffer. Society had accepted that there is nothing better to do than letting them suffer and overcome their karma. We have moved a long way from there thanks to the work of leading social entrepreneurs. We are now still in the thick of transition when it comes to disability like the persistent argument to change the word ‘disability’ into something positive such as ‘differently abled’. I remember an Ashoka fellow saying, “Ignore how we are called, and let’s accept the fact that we are disabled”. There is nothing wrong being called disabled, but turning a blind eye is the most painful part. We have just about started to make our spaces more inclusive, accept colleagues who might be disabled, and friends who have challenges to help society take a step forward in being empathetic. Obviously, as many of us know - the journey is pretty long and we are just starting.
We must understand that the way we see disability needs a change of framework. It is not only about shaping a person’s perception but driving a complete shift in how we will all eventually see disability. We must imagine a world where disability is forgotten, a world where normalcy is all encompassing, a world where discrimination is unimaginable, a world where acceptance is the norm and inclusion is the way. It is indeed possible, even if this appears similar to talking about freedom in the early nineteenth century in India or about abolishing racism in the mid nineteenth century. We all know,
things can become past and if there is anything most urgent - it is the way we look at disability. This edition talks about this very issue. Reshma our new fellow who questions the way we define normalcy and introduces new steps we can take to move on to question the mental health in India. Amba Salelkar argues that we are only finding quick fix solutions by suggesting changes in disability policy, while a basic rethink of the bill is required. We also look at how we can open economic opportunists for disabled people in an article by Ashoka
Fellow Sugandha Sukrutaraj. We only hope that we not just accept disability, but every one of us start to take and own this challenge to ensure that we bring an end to discrimination, policies could be the start that we can enforce now. The way to achieve this transformation require something beyond force; it needs us to work towards the harder goal of transforming ourselves towards an everyone a changemaker world. In inspiration, Vishnu Swaminathan
FELLOWCONNECT SEPTEMBER 2014 | ii
Wireless Currency, Endless Possibility Seven promising mobile money projects to emerge from BRAC's challenge
T
By TASMIA RAHMAN AND PAROMA AFSARA HUSAIN
Throughout our journey from being a small post-war rehabilitation operation to becoming the world’s largest development NGO serving 135 million people in 11 countries, BRAC has always championed innovation with an ambitious vision of scaling up to have a big impact. One aspect that has often been attributed to BRAC’s success in its various programs – including microfinance, education, healthcare, agriculture, and community empowerment – is its practice of a simple mantra: “pilot, perfect, scale up”. (Full disclosure: The authors are employed at BRAC). BRAC’s work with bKash, the largest mobile money provider in Bangladesh, began with a similar small microfinance pilot. It eventually transitioned 100 percent of the enterprise loan installment collection in a few locations from cash to cashless payments. Back in 2011, mobile money was still an unfamiliar concept in Bangladesh. bKash had just started its operations and the few incumbent mobile financial service providers in the market were still testing the waters to understand how it could be used. Clients had difficulty grasping how money can be transferred to any location through mobile phones in a matter of seconds. Fast forward to 2014. In less than three years, the mobile money landscape in Bangladesh has drastically transformed. With nearly 14 million registered users, Bangladesh now boasts the fastest growing mobile money market in the world. In urban and rural locations alike, mobile money has a near-ubiquitous presence, with agents numbering close to 200,000. Given the developments in the mobile money market, BRAC saw a tremendous opportunity to utilize this technology
in improving its product and service delivery, as well as operations. In addition to the earlier loan installment collection and savings pilots, Education Programme also recently started disbursing its student scholarships via bKash. We started to ask ourselves: Is there more that we can do? With support from the Bill & Melinda Gates Foundation, BRAC’s Social Innovation Lab launched the Innovation fund for mobile money in March to explore new possibilities and create the necessary space for innovations using mobile money within BRAC in Bangladesh. Recognizing that successful innovations often require risk and experimentation, the fund intends to support projects that work with mobile money. To scope out the best ideas for BRAC to consider and implement, an online idea challenge was introduced where anyone could submit an idea, comment or vote on ideas. The goal was to spark conversations within the BRAC community around how mobile money can be used by BRAC to innovate, improve service delivery, and gain efficiency. Through promotional activities that ranged from engaging mobile money experts from around the world to performing the first ever flash mob at BRAC to making mobile money a major theme at the second annual Frugal Innovation Forum, the challenge drew an enthusiastic response from people, receiving 100 wide-ranging ideas in just five weeks. Following a rigorous selection process, seven ideas (see below) that showed the most potential were chosen for implementation. Throughout our journey from being a small post-war rehabilitation operation to becoming the world’s largest de-
01 | FELLOWCONNECT SEPTEMBER 2014
velopment NGO serving 135 million people in 11 countries,BRAC has always championed innovation with an ambitious vision of scaling up to have a big impact. One aspect that has often been attributed to BRAC’s success in its various programs – including microfinance, education, healthcare, agriculture, and community empowerment – is its practice of a simple mantra: “pilot, perfect, scale up”. (Full disclosure: The authors are employed at BRAC). BRAC’s work with bKash, the largest mobile money provider in Bangladesh, began with a similar small microfinancepilot. It eventually transitioned 100 percent of the enterprise loan installment collection in a few locations from cash to cashless payments. Back in 2011, mobile money was still an unfamiliar concept in Bangladesh. bKash had just started its operations and the few incumbent mobile financial service providers in the market were still testing the waters to understand how it could be used. Clients had difficulty grasping how money can be transferred to any location through mobile phones in a matter of seconds. Fast forward to 2014. In less than three years, the mobile money landscape in Bangladesh has drastically transformed. With nearly 14 million registered users, Bangladesh now boasts the fastest growing mobile money market in the world. In urban and rural locations alike, mobile money has a near-ubiquitous presence, with agents numbering close to 200,000. Given the developments n the mobile money market, BRAC saw a tremendous opportunity to utilize this technology in improving its product and service delivery, as well as operations. In addition to the earlier loan installment ...
A BRAC client speaks with a staff person about her loan during a village organization meeting.
fc | BANGLADESH ... collection and savings pilots, Education Programme also recently started disbursing its student scholarships via bKash. We started to ask ourselves: Is there more that we can do?
Selected Projects (nearly) Cashless branch: This pilot
undertaken by the Integrated Development Programme is a move towards creating cashless branches in the remote char areas (riverine islands created and destroyed by floods and erosion). Given the transportation challenges and limited access to financial services in these areas, mobile money will make it easier for both BRAC clients and staff. Mobile micro-insurance: Most of
BRAC’s clients lack access to traditional forms of insurance. Through a joint collaboration, the Microfinance Programme and outsider partners will offer micro-insurance with low, flexible premiums using mobile technology for poor households. It will offer protection for incidents like accidents and illnesses. Flexible school fee payments for secondary schools: Paying school
fees can be a challenge for low-income parents. To address this, the BRAC University Institute of Educational Development will introduce a flexible payment scheme using bKash at the SSCOPE low-cost secondary schools. Parents can pay without needing to come to the school premises each time. Adolescent savings: To encourage
savings behaviour among adolescent
Photo courtesy: BRAC
girls and provide easy access to safe savings, the Education Programme will work with their adolescent clubs to encourage the habit of mobile savings among its youth club members. Adoption of technology is higher among youth, so this can drive adoption and create a lifetime savings habit. Mobile payments for community health workers: This initiative by
Health, Nutrition and Population Programmewill look to improve operational efficiency, transparency and security by integrating mobile money instead of cash to disburse honorariums and incentives to thousands of workers.
With support from the Bill & Melinda Gates Foundation, BRAC’s Social Innovation Lab launched the Innovation fund for mobile money in March to explore new possibilities and create the necessary space for innovations using mobile money within BRAC in Bangladesh. Recognizing that successful innovations often require risk and experimentation, the fund intends to support projects that work with mobile money. To scope out the best ideas for BRAC to consider and implement, an online idea challenge was introduced where anyone could submit an idea, comment or vote on ideas. The goal was to spark conversations within the BRAC community around how mobile money can be used by BRAC to innovate, improve service delivery, and gain efficiency. Through promotional activities that ranged from engaging mobile money experts from around the world to performing the first ever flash mob at BRAC to making mobile money a major theme at the second annual Frugal Innovation Forum, the challenge drew an enthusiastic response from people, receiving 100 wide-ranging ideas in just five weeks. Following a rigorous selection process, seven ideas (see below) that showed the most potential were chosen for implementation.
Mobile disaster relief funds: For di-
sasters like evictions, garment factory fires, and floods it is difficult to mobilize funds quickly, even though many would like to donate. The Disaster Environment and Climate Change programme will set up a simple donation platform that enables them to send money via their mobile phones. This idea originated from a university student in Chittagong.
This article was originally published on Next Billion.
We hope that these projects will inform and encourage similar initiatives in the future, both within and outside of BRAC, and mark the beginning of a digital revolution for the organization.
Tasmia Rahman is the deputy manager for the social innovation lab at BRAC. Paroma Afsara Husain is a management professional at BRAC’s Microfinance Research and Development Unit.
FELLOWCONNECTSEPTEMBER 2014 | 02
Photo courtesy: Guim UK
Four innovation trends that could change the way we design roads in 2020
I
In early 2011, the Bangalore city police took a bold step forward to shed the “inefficient government servants” tag and launch a Facebook page to try innovative techniques to handle the traffic woes, and reach out to the city’s youth. Today, with 147,005 likes, a new traffic app and a huge follower base, the page is a citizen’s hope to access traffic justice. One thing is clear: crash tests to safety gear, the global innovation marketplace is witnessing a huge demand for new products and solutions to ensure that people travel safe. While this global transition is one that will fascinate many, a few unique trends have kept the technology community at the edge of their seats. Better traffic technology: Never has there been an area so ignored in the field of safety as traffic management. India, one among the countries that suffer from high road fatalities, stands as a grim example of what we could all face if we were to ignore traffic issues. The growing increase in smartphone ownership in the subcontinent is push-
By MEERA VIJAYANN ing companies to embrace mobile technology. The flood of new traffic management apps such as Traffic Fines India, Traffline and Traffic Tutor stand testimony to the fact that citizens are interested in safer road use. Traffline shows live traffic updates on Indian roads, allowing drivers to plan their routes well. Traffic Fines India — an app that notifies drivers if they have committed traffic violations — goes a step further in helping one track and curb offenses. In the US, the city of Pittsburgh embraced SURTRAC (Scalable Urban Traffic Control) after years of struggling with intense traffic conditions. The project, executed with Carnegie Mellon University’s Transportation Center, showed tremendous promise. Officials estimated that the system reduced travel time by 25% and vehicular emissions by 21%. Data collection, another intensely debated arena, seems to be the need of the hour for government bodies to analyse, improve and facilitate evidence-based interventions
03 | FELLOWCONNECT SEPTEMBER 2014
to reduce fatalities. Last year, Google bought out Israeli mapping service, Waze, in an effort to invest in better traffic search management and social data. Automatic Number Plate Recognition (ANPR) and license plate reader (LPR) technology is also on the table for top companies as there is a bigger focus on traffic surveillance amid controversy. Smarter road design: Last month, Dutch designers, Studio Roosegaarde, launched the “smart highway” concept in the Netherlands, which features luminescent lane lines to improve road safety in Europe. Another invention, “The Solar Roadways” project, led by a husband and wife team — Scott and Julie Brusaw — garnered the attention of experts worldwide as it pushed the United States government to explore alternative energy solutions for better road infrastructure. Through similar innovations, road design is finally getting the attention that it deserves; many urban innovation companies are focused on working towards smarter mobility.
Be it safer highway engineering or using better materials, environmentally sustainable road design is also seen as a necessity for building smarter cities. Organic resin is slowly replacing traditional asphalt as a material for eco-friendly roads. In India, the Union Ministry of Road Transport and Highways is considering multi-modal transportation as an option to decongest roads and bring down pollution levels caused by vehicles caught in a jam. It’s becoming increasingly evident that poorly planned roads not only increase the negative impact on the environment, but also involve high costs for maintenance. Changing driver behaviors: Needless to say, transforming citizen behavior is an immense challenge. Drivers and motorists often shun personal responsibility, and in countries that have high-density traffic, road rage and misuse is a serious issue. Ashoka Fellow Rohit Baluja, founder of The Institute for Road Traffic Education, is working towards addressing this trend. In an effort to transform “road culture” in India, he develops training tools to better equip the traffic police, institutions, and accident investigation teams. In Britain, campaigners like RoadSafe are stressing the importance of private-public partnerships to create interactive programs for young drivers to cultivate a greater sense of responsibility on the roads. Countries like Uganda, which lacks a strong framework, have taken up the issue of pedestrian safety to instill a sense of confidence in citizens. Last month, the country worked closely with UNEP (The UN environment programme) to develop a stronger NMT (non-motorised transport) policy to improve the safety of pedestrians and cyclists. Though this, the government sought to reinforce the idea that it will be responsible for the country’s road infrastructure. It urged citizens to change their behaviour on roads so that they can work together to reduce road fatalities. Vehicle safety and technology: Most entry-level car variants in South Asia lack even a standard feature like a driver-side airbag. As a result, road deaths in India account for nearly 10% of road fatalities worldwide. According to the National Crime Records Bureau (NCRB), the incidence of accidental deaths rose by 44% between 2001 and
2011. In 2013, The Global status report on road safety released by the WHO, further attributes 78% of all road fatalities in India to human error. This year, the government responded by drawing new parameters to enforce basic car safety norms through mandatory side-impact and frontal crash tests. UL, a global safety certification company, has also launched a campaign to source road safety innovations to involve more Indian citizens in identifying safety solutions for their booming cities. Top car manufacturers and governments are looking for viable technology options such as V2V (Vehicle-to-vehicle), AR (Augmented Reality Dashboards) and energy-storing body panels to enhance vehicle safety. Google’s self-driving cars have now caught the attention of many who are discussing smarter mobility. No matter which part of the world we live in, we’ve got to admit roads are a central part of our lives. Fortunately, as the world embraces innovation, more people are taking interest in helping spark major changes that could reduce mortality rates from traffic accidents.
Photo courtesy: Guim UK This article was originally published on Forbes towards the “Safer roads, Safer India” campaign run by UL and Ashoka Changemakers.
Meera Vijayann leads communications for Ashoka India. Her articles on social enterprise, gender and culture have been published in several international platforms that include Open Democracy, Forbes and The Guardian.
FELLOWCONNECTSEPTEMBER 2014 | 04
Challenging the Label
S
By RESHMA VALLIAPPAN
What does it really mean to live with schizophrenia? Ashoka Fellow Reshma Valliappan shares her experiences and breaks myths about mental illness.
Statistically, 1 in 4 people have experienced some form of a mental health issue and 1 in 100 are diagnosed with schizophrenia. People afflicted with a mental health issue or illness are often labeled as lunatic or mad. In fact there are laws in this country that refer to someone like myself with schizophrenia, as a ‘lunatic.’ Society consists of ‘fitting in’ models and this is applicable even to those with schizophrenia. There is a constructed box placed upon the person’s whole existence, which wipes the person and leaves behind a ‘schizophrenic’. Conventional norms and methods of recovery in mental health are not able to address the wholeness of a person and are only able to apply a medical label or term to the ‘illness.’ Such methods are being challenged globally but the movement is not strong. Voices of individuals with the condition
05| FELLOWCONNECT SEPTEMBER 2014
Photo courtesy: Reshma Valliappan
are not being heard, and there are few who are encouraged and enabled to speak openly and honestly without feeling ashamed or further stigmatized for coming out of the closet with their mental ‘illness.’ When I first stumbled across the idea of The Red Door, it likely came from having faced social stigma for having a mental illness. I wanted to shed the labels placed on me, and for my voice to be heard. Life is stressful for everyone. Whether you are running a business, social organization, or are a self-employed artist, you will face a significant amount of stress when managing your life and career. Imagine facing a mental health issue in addition to these life stress factors? It is increasingly difficult for someone with a mental health issue to deal with the same life stress factors as
everyone else, especially when society places them in boxes with labels, and does not perceive them as being equal. Through creative story-telling, drama, role-play, art, music, and loads of humor, the Red Door seeks to shed labels by building a bridge between the perceived world of the mentally well (‘un-mad’) and the mentally unwell (‘mad’). Why the emphasis on creativity? Creativity has often been linked to altered states of mind and realities, and it is immediately available to any person. It is difficult for anyone with a label of mental illness to openly speak about themselves to a group of strangers. There is a cathartic process of sharing with the safety net of anonymity that an online platform provides, which allows the person to feel free and yet connected. The Red Door’s supporters who are not people with ‘mental illness’ but are considered ‘normal’ have begun identifying themselves as ‘pseudo-normal’ or ‘undiagnosed nut’, which is important in breaking the threads of societal madness and de-stigmatizing the word. The use of these words suggests that people are connecting to something and by doing so they can begin a dialogue that would challenge many beliefs, constructions and labels. Society often closes doors to persons with mental illness like schizophrenia. However, there is an expectation that upon recovery, a person with schizophrenia must live and function like others. This is difficult to reconcile because many doors were closed to that person initially. The Red Door seeks to help open doors so that these people can access social and economic opportunities. This is achieved by writing articles and leading discussions on legal privileges, the kinds of discrimination that exist, the levels of insensitivity, and the disabling nature of mental health illness. In addition, the Red Door brainstorms ideas with community members on how to make change and improve conditions. Letting persons facing mental illness know that the Red Door is a ‘safe space’ where they can ask for help, gives them a support system that expands beyond their care givers. Breaking the walls of social stigma is difficult, however, for any growth to happen, ‘growing pains’ is a part of the
process. Having more and more people share their struggles and speak of their experiences is a huge shift from what it was five years ago. These are people who are located all over the globe which also helps make this a global movement of human connection.
The main goal of the Red Door is to seek people with mental health issues and encourage them to openly speak of their experiences. The Red Door also tries to break social stigma around mental health illness so that people can shed their labels and better access employment and educational opportunities.
The main goal of the Red Door is to welcome people with mental health issues and encourage them to openly speak of their experiences. The Red Door also tries to break social stigma around mental health illness so that people can shed their labels and better access employment and educational opportunities. Persons with mental health issues have career and life aspirations, and many want to be in regular office environments, in stable relationships etc. just like other ‘normal’ people. They want to be heard, their wholeness as a ‘person’ recognized and their choices respected. They want to be treated and perceived as ‘normal’ people. They want to be something great in life – and this ‘something’ will only be realized when the person behind the label is seen as a person and not a condition.
Photo courtesy: Reshma Valliappan
Ashoka Fellow Reshma Valliappan is a mental health self-advocate and researcher at The Red Door.
FELLOWCONNECTSEPTEMBER 2014 | 06
Who’s disability is it anyway? By SUPRIYA SANKARAN
Coming out and openly discussing issues was the single most powerful thing Reshma did. With humor and wit, she created a space for people to ask questions that they would have not otherwise asked
07 | FELLOWCONNECT SEPTEMBER 2014
I
I grew up in a family where I saw mental illness up close. I have relatives who suffered from drug and alcohol addiction. A few others have been diagnosed or suspected as suffering from depression, bi-polar disorder and schizophrenia. Some of them were older and others were younger. Some were well educated and others were not. But mostly it did not matter. While they were all deeply loved by everyone in the family, decisions were always made on their behalf. It was a paternalistic approach of care. We understood it a medical problem - a chemical imbalance in the brain that somehow incapacitated them from making critical decisions (especially in relation to their own ‘treatment’). We thought we were informed, empathetic and responsible (and even liberal) in our approach. Living in a deeply connected world, we learn, discuss and debate on a wide range of issues today. But seldom do we confront something that makes us challenge our preconceptions and re-examine our outlook. Yet, exposing myself to conversations and people these past few months has shaken my perspectives. I have also had the opportunity to reassess my understanding and actions. When I heard the voice Reshma Velliappan, I realized that I had never heard the voice of a person who was
diagnosed with mental illness (at least openly). I had only heard the voices and perceptions of caregivers, psychiatrists and other experts who spoke on their behalf. In a few hours, she unknowingly and subtly challenged so many notions I did not realize I had. She made me recognize how we, as a society, often attributed everything about them - their happiness, anger, and interests, to their illness. She reminded me that we often forget to see the person beyond the label. More importantly, I became aware of how so many of us subconsciously reinforced the view that a person was suffering from a disability because we have our own. Coming out and openly discussing issues was the single most powerful thing Reshma did. With humor and wit, she created a space for people to ask questions that they would have not otherwise asked — what is it like to hear voices? -- and empathize with different experiences. Her authentic voice of leadership has created the space for us as a society to reflect on the constructed idea of ‘normalcy’ and re-think what ‘recovery’ could mean why it is not possible to befriend the voices instead of subduing them? We also begin to see the hypocrisy of existing approaches. While the medication is aimed at making them appear ‘normal’, they are legally and socially stripped of all agency in their lives.
Almost always confined to the four walls of their home or institution or are supervised by caretakers, the legal framework presumes people living with mental illness lack the ability to love; make friendships, marry, own, inherit, and transfer property, and to make decisions that affect the status of their own lives. The fact that we have physically impaired people as sport persons, judges who are visually impaired and leading artists who suffer from schizophrenia, shows me that the real disability exists in the way we as a society, think, understand and respond to disability. The root of social, legal and economical exclusion of persons with different abilities lies in a society’s disability to ‘see’ the world from the perspective of the blind, ‘hear’ and understand the language of hearing impaired or acknowledge the madness in each of us. In a society that thrives on labels, there is an urgent need to explore creative ways of breaking the barriers between different worlds. We have to create shared spaces that allow us to ‘step in’ to each other’s worlds and engage in meaningful dialogues that allow us to reflect, question and understand different perspectives and realities. This will not only help us see what we all have in common, but also help in developing an empathetic lens to building a society that is more inclusive.
Supriya Sankaran is the Director of Venture and Fellowship at Ashoka India. She can be reached at ssankaran@ ashoka.org
FELLOWCONNECTSEPTEMBER 2014 | 08
Photo courtesy: AMBA
A
Power to You
In Conversation with SUGANDHA SUKUTRAJ
Ashoka Fellow Sugandha Sukutraj wears a smile when she talks about her organisation AMBA’s long journey. Around her, young adults focus on their computer screens, busily typing out data into forms. Sugandha founded AMBA a registered Trust, and AMBA Centers for the Economic Empowerment of the Intellectually Challenged (CEEICs). Photo courtesy: AMBA
AMBA is an institution and not a charity. It is a place to enable the intellectually challenged and do away with the generalisation of the word ‘disabled’! It is a voice and not a sound of plea in society.
09 | FELLOWCONNECT SEPTEMBER 2014
Through these centers she integrates young people with cognitive disabilities into the mainstream by training them for specific low-skill information technology jobs, thereby empowering them economically and giving them a sense of purpose. “We have developed an IT solution, to enable livelihood opportunities for adults with moderate and severe intel-
-lectual disability. Our model revolves around a visual and functional learning curriculum exclusive to this community and only possible when tutored by peers. With no knowledge of the alphabet in any language, this process allows people to lean two window data entry within 6 to 12 months,” she beams. A new approach AMBA’s strategy has two main verticals. It is now exploring collaborations to take the ‘learn and earn’ concept to special institutions around India. Since the training is done in the core centre in Bangalore, it is necessary that the training is done at our core center in Bangalore so: One special educator and two youngsters with moderate ability and a natural lean to helping others are invited to experience the peer driven process. This makes a brilliant beginning for the visiting peers to do training while being exposed to the special educators to the limitations they have to work within. Visiting the base center helps the visiting special educator to picture the end result they need to strive for. The organisation explores work within mainstream organizations to bring in work to match the training. The trainees have the capacity to do Customer Application Form (CAF) Data Entry
offline and online. And AMBA’s core team ensures the end-to-end process is delivered within the timelines. It also has a good tracking system to track efficiency at the remote centres. “The IT solution that we have developed is a visual and functional learning curriculum and is possible only when tutored and driven by peers.” Sugandha suggests, “They lack the social or reasoning skills to work within a mainstream environment, so we collaborate with special institutions across the country to create an empowered society within a suitable environment by guiding them into becoming hubs for training and employment.” AMBA and its collaborative centres today service telecommunications, hotels, insurance, ice cream and market research companies to name a few in more than one language. A few top companies that have benefited from AMBA’s work are the famous Adigas’s hotel chain, Idea cellular, Airtel cellular and ING Life insurance. The gap between training and enabling work is huge but the organisation is working towards bridging this. Looking ahead In 2013, one of AMBA’s employees, Priya won the prestigious CII Woman’s Exemplar Award 2013 for Education. The organisation’s inclusive approach made a difference to its employees.
On the 25th of May this year, AMBA completed ten years of work in the sector. And no one is happier than Sugandha. “What a journey it has been!” she smiles, “ Finding an education package for a community that cannot be educated; getting companies to give them the opportunity to their back office data entry; the cynicism; the denials-it drove us to strive for more! Today when we see our model being replicated in 75 special institutions in 15 states in India, we realise it was worth the roller-coaster ride!” AMBA is an audacious dream, a movement to bring dignity, joy and sustainable livelihood to a community that has just discovered it can. When asked about her thoughts about the last few years, Sugandha beams and says, “We are because of them!”
Ashoka Fellow Sugandha Sukutraj is the Founder of AMBA, an organisation that integrates young people with cognitive disabilities into the mainstream by training them for specific low-skill information technology jobs, thereby empowering them economically and giving them a sense of purpose.
Photo courtesy: AMBA
FELLOWCONNECTSEPTEMBER 2014 | 10
Photo courtesy: SafetiPin
11 | FELLOWCONNECT SEPTEMBER 2014
It’s Time to Pin up! By KALPANA VISWANATH
T
The safety of cities for women is a major concern in India, and it is imperative to find innovative ways to address this issue. Safetipin is a map based mobile application that collects data and encourages individuals, communities and stakeholders to engage on the issue. It is free and can be accessed by anyone. One of the first steps to improve citysafety is the identification of factors that make a space unsafe. We know that women and girls feel quite unsafe in many public spaces in cities. This feeling of unsafety extends beyond experiencing violence and includes how women and girls perceive a city. Cities need to be spaces where women and girls are able to move around freely without the fear violence. The core of Safetipin is the ‘safety audit’ which is an internationally used methodology to gauge the safety of public spaces by looking at certain factors: the extent of lighting, openness of spaces, visibility, the presence of people in public, access to public transport, visible security, gender diversity and the state of the walk path. Safetipin uses these factors along with people’s feeling of safety to put pins on a map that depict the level of safety of that place. Thus anyone can contribute to a safety audit and this information immediately becomes public data that is visible for other Safetipin users to see and use.
Safetipin was first launched in Delhi in November 2013 and in six months over 5000 users have been registered and there are over 10,000 pins on safety all across the city. It has subsequently been used in Guwahati, Bengaluru, Bogota in Colombia and Jakarta in Indonesia. There are another 5000 users from other parts of the world. It is also being introduced in Pune, Chennai, Kolkata, Trivandrum and Kochi in the coming months. The key premise of Safetipin is that safety will ensue when more and more people become engaged in creating safer communities and cities. Thus as more and more pins appear on the map, this generates data which can be used to conduct advocacy and data for urban service providers to work on initiatives and projects for improving safety.
We recognize that certain groups may have limited access to smart phones and thus Safety Chapauls were introduced as a way to collect and access data without the use of phones.
In each city, partnerships are needed with local Non-Government Organizations (NGOs), women’s groups, and local government agencies to process and act upon the findings. In Delhi, Safetipin has a partnership with the south west district Delhi police, where an entire area has been mapped using Safetipin. Data on this area has been shared with the police, who will be using the information to plan improvement projects. For example, Safetipin users have identified the lack of police presence in the evenings,
fc | GUEST poor lighting and the lack of people on the streets, as main factors for the lack of safety in spaces. Each of these factors needs different service providers to intervene in order to effect any change. Another model of using Safetipin is through partnerships with NGOs and Community Based Organizations. In Delhi, Safetipin has partnered with Jagori, a women’s organization, and Literacy India in Gurgaon to set up Safety Chaupals in low income neighborhoods to ensure that Safetipin can be used to help improve the situation of the more vulnerable populations in the city. We recognize that certain groups may have limited access to smart phones and thus Safety Chapauls were introduced as a way to collect and access data without the use of phones. A Safety Chaupal is a physical space where women, girls, and others from the community share their main safety concerns and identify which areas are most unsafe and the reasons for this. Along with safety audits done by some members of the community, the data from people’s experiences is mapped onto an online platform and the entire data is then used for advocacy purposes. Safetipin aims to be a tool that can support communities and service providers in their endeavour to make neighbourhoods and cities safer for women and others. We recognize that while it is important to collect data, it is equally important for people to feel engaged and involved in order to ensure change happens. We believe that people want to improve the safety of places that they live in and Safetipin aims to support this goal.
Kalpana Vishwanath is the co-Founder of SafetiPin, a map-based mobile application which allows the general public to share views and information about their neighbourhood and its safety.
FELLOWCONNECTSEPTEMBER 2014 |12
Photo courtesy: Jo Chopra
Reach Out, The Right Way
E
By JO CHOPRA
How can we reach out to children with disabilities in remote areas? Jo Chopra, the Executive Director of the Latika Roy Foundation, discusses the best interventions.
Early intervention is crucial to mitigate and prevent developmental disabilities. Yet EI services are rare in India and non-existent in rural areas. Diagnosis is merely the first piece of the puzzle, while follow-up is crucial. Children with developmental disabilities need regular follow-up care after they’ve been assessed. But what if those kids are poor and live miles away from services? What if there is nobody who understands their special needs? That is exactly what we found in the foothills of the Indian Himalayas. We began to engage with the existing public health network. We trained community health workers how to identify kids with delays, refer them to us early and then follow up in their homes. But it’s the parents who have to do the dayin, day-out work. They need support, encouragement and guidance. That’s where the community health worker
comes in. Two problems, however: they have limited medical knowledge or they lack the confidence to discuss disability. The follow-up initiative enabled us not only to train community level workers but allowed us to give them a tool. And a tool, it seems, is the key to success. Keeping track We developed a Child Monitoring booklet with few suggestions for exercises and activities to promote the child’s development. The booklet is visual, using simple line drawings. We shared this booklet with parents and explained in detail when their child is assessed. The parents practiced the exercises a couple of times with our team so they feel confident before they leave and know what they are doing. As a part of our training with the com-
13 | FELLOWCONNECT SEPTEMBER 2014
munity health workers, we used the same booklets and the same examples so that they were familiar with what the family had been asked to do when they visited a family post-assessment. But, we were talking to the wrong people. Re-thinking our approach Community health workers are trained to deal with pregnancy, childbirth and postpartum care but not with children. They don’t know how to deal with day-to-day childcare. They don’t know how to deal with day-to-day childcare, much less with the issues children with special needs raise. So, after several months of training, begging and cajoling community health workers to identify and refer kids with difficulties and follow-up for post-assessment, we switched tracks.
fc | GUEST
Photos courtesy: Jo Chopra
We then reached out to childcare workers. Sounds obvious, right? They work with children, after all. Our program was in health, so we were focusing on health workers. And we were wrong. If you want to work with children, seek people who work with children! This was our biggest lesson and our most important discovery: ‘let the line between the solution and the recipient be as short and as straight as humanly possible’. It was clear sailing after that. In one month, the child care workers had identified more kids than the heath care workers had found in seven. Once identified, the childcare workers also persuaded parents to come in for assessments and carry on follow-up sessions. It’s not what you do, it’s the way that you do it “Just give me a chattai and four feet of space and I can assess any child anywhere,” says Pushpa Painuly, our program’s special educator. Assessments are ongoing and dynamic and don’t require much in the way of equipment. Seeing our professionals down on the floor, play and talk with their children, reassures parents that helping their kids develop isn’t some mysterious process that only professionals can perform. Because our suggestions are simple, concrete and based on issues that the parents have
brought up themselves, families find it easy to implement them. “I talk to my child all the time now and I never did this before,” one parent reported. Another told us, “Since I made a daily plan for my child, my own day has become more organised.” One of the parents also said that she managed to toilet train her child and that it helped her family. Making it easy Many parents have told us how useful they found the monitoring booklet. Its visual format (reminders) makes it easy for semi-literate families to use. Even families comfortable with reading have said that having pictures makes them more confident that they are doing the activity the right way. Promoting child development is a process and a partnership. Engaging with parents in their own community and gaining the support and trust of field level workers has made this initiative rewarding for everyone involved. Working with the government’s existing health infrastructure is the key to our success. By engaging with policy makers, bureaucrats and field level staff, we are mainstreaming early intervention and showing what is possible on a much wider canvas. There are still many improvements to what we are doing, but we’re happy with the progress we’ve made so far.
After an assessment at our government hospital based centre, Gubbara, the Latika Roy Foundation (www. latikaroy.org) followup project provides families with expert services for their children in their communities. Local level health and childcare workers are trained to identify and refer children. Our team regularly meets the parents to update their skills and help them monitor their kids.
Jo Chopra is the Executive Director of The Latika Roy Foundation, an organisation that provides education, therapy and training for children and adults with special needs.
FELLOWCONNECTSEPTEMBER 2014 | 14
Re-thinking Rights
C
In Conversation with AMBA SALELKAR
Could you give us a background of your work at the Inclusive Planet Centre for Disability Law and Policy?
The Inclusive Planet Centre for Disability Law and Policy was set up in 2011 by Rahul Cherian and Anjana Thomas to focus on bringing about systemic change in the empowerment of persons with disabilities through advocating legislative and policy changes to remove barriers which exist that inhibit the participation of persons with disabilities in society. IPCDLP steps away from the erstwhile models of charity-based approaches and medical-based approaches to disability and aligns itself with the social model of disability, which does not consider disabilities to be synonymous with impairments — being blind, or deaf, or mentally ill, or having cerebral palsy for example — but focuses on the barriers which are present in society which prevents the effective participation of persons with disabilities. My work is twofold – one is examining upcoming legislation and policy and suggesting changes to make the legislation more meaningful for persons with disabilities. As of July 2014 IPCDLP reaches out directly to approximately 200 individuals and organizations
working in the disability space. The second part of my work is interventions as a member of the Disability Rights Alliance, on access related issues in Chennai. I contribute mainly as a legal consultant but I find that it prevents my approach from being too academic and more in tune with ground realities. The policy infrastructure in India for disability - what are your thoughts about the present situation? There is a lot of good work happening in policy, unfortunately, the needs of the marginalized often get sidelined. I don’t really blame people working in more “mainstream” policy centres for this – disability is one of those perspectives that get ignored. Disability specific legislation and policy of course gets the discussion it deserves, but it tends to prioritize the segregation of interests. The accepted term is now “persons with disabilities” – the reason being that one must recognize a person to be a person first, and not make the impairment the focus of one’s identity. Consequently, you need to look at every single legislation from the perspective of persons with disabilities because they have identities beyond the impairment – as women, as tax payers,
as voters, as commuters – just as anyone else. It’s hard to articulate suggestions without being encountered with arguments like “but how can you ask for closed captioning in satellite TV programming when so many disabled people are begging on the road?” Yes, the destitution of persons with disabilities is a huge problem and needs to be addressed immediately – these persons need rehabilitation and access to social security and welfare schemes on a priority basis. Does that make this inconsistent with say, accessible broadcasting? I don’t think so. The way this needs to happen is by letting the Governmental bodies dealing with social justice and empowerment focus on access to social justice and empowerment for persons with disabilities, and “mainstream” disability elsewhere – make the Ministry for Information and Broadcasting include accessibility guidelines as part of all programming. That’s unfortunately the problem – this is what is not happening – and many times the call for UNCRPD compliance gets responses redirecting activists to the Department of Disability Affairs. Everything cannot be covered in 4 statutes concerning persons with disabilities.
The accepted term is now “persons with disabilities” – the reason being that one must recognize a person to be a person first, and not make the impairment the focus of one’s identity. Photo courtesy: Amba Salelkar
15 | FELLOWCONNECT SEPTEMBER 2014
Photo courtesy: Amba Salelkar
The starting point for a lot of young activists in the disability sector was exchanging ideas on inclusiveplanet.com...
The Rights of Persons with Disabilities Bill, 2014 - what are your perspectives?
How should social entrepreneurs look at disability policy? And why is it important in the work that they are doing?
There are a few things here really. One is that the Bill was originally drafted with representatives of the disability sector and was then diluted by the Ministry and finally the version which received the assent of the cabinet was completely contrary to anything in the public domain till then. As a result, there is a great feeling of betrayal within the movement, especially with the disregard to opposition to the Bill and the absolute rush to get it passed. I think there wouldn’t be a problem if the Bill was otherwise compliant with the UNCRPD, but it is far, far from it, and in fact goes against even beneficial precedent set out by the Supreme Court on reproductive rights, employment, and access. The one positive aspect is that it widens the definition of disability from the 1995 list of merely 7 impairments.
I learn a lot from other social entrepreneurs and movements. I see a lot of similarities with the women’s movement and the dalit movement and now even with the LGBTQ movement as well – like I said earlier, it’s a question of societal barriers, and how to remove them.
I’m the last person to argue that all issues can be solved by effective legislation, but it sure goes a long way – if you look at the legal regimes in Europe, or at the Americans with Disabilities Act in the U.S. The RPD Bill is hardly a “rights” based legislation – it is mostly drafted as a list of Governmental obligations. Of course what really needs to be done is an amendment to the Constitution of India including disability as a prohibited ground of discrimination, and I don’t think that is too farfetched an ideal. Instead, we had a legislation which inexplicably permits discrimination on the grounds of disability as long as it is a proportionate means of achieving a legitimate aim. I hope that the Standing Committee applies its mind to the barrage of responses it is bound to receive on the Bill by the disability sector.
When I exchange notes with other colleagues working in policy I realize that Disability Policy work has its own set of challenges. For one, funding is extremely difficult, mainly because funding agencies that would like to “help the disabled” find it easier to invest in more tangible means of support – distribution of assistive devices or vocational training, for example, which of course are important – rather than help sustain a policy group working towards long term change. There’s no guarantee that suggestions we make even end up getting considered by law makers. So I think there’s a lot that we all have to learn from each other on this. I think that social entrepreneurs can learn about the use of technology from those working in disability policy. Many persons with disabilities cannot leave their homes on account of inaccessible environments. Till technology came in, they were unable to participate in the community, in exchanging ideas: at times conferences and conclaves can be very exclusionary thanks to the unavailability of accessible infrastructure and accommodation and transport. Thanks to technology, I can exchange notes with deaf-blind activists in the north eastern parts of the country. You have groups like BarrierBreak headed by Ashoka fellow Shilpi Kapoor
who have made such important advancements in technology specific to the needs of persons with disabilities which contributes to inclusion. And women, dalits, transgenders, homosexuals – so many people cannot exchange ideas because they cannot come out – literally or figuratively – for a conventional meet and exchange of ideas, and I think activist groups in these circles can learn a lot from the disability movement and how it is trying to bring voices – speaking in different languages – together, to press for change. It’s not like it isn’t happening already, but since it is so crucial for the disability movement it is probably the movement to watch in this regard. I’m excited by the creation of spacess like accesshub.org set up by students of the University of Michigan with the National Institute of Speech and Hearing, Trivandrum, and is I think going to be the big space to watch for exchanging ideas and policy activism in the disability sector. The starting point for a lot of young activists in the disability sector was exchanging ideas on inclusiveplanet.com, a fully accessible social networking website set up by Rahul Cherian and a few others, so Access Hub is something I’m looking at as a starting point for the next generation of disability activists.
Amba Salelkar is a lawyer and activist specializing in disability rights and policy at the Inclusive Planet Centre for Disability Law and Policy. In an interview with Ashoka, she talks about the need for social entrepreneurs to understand disability policy.
FELLOWCONNECTSEPTEMBER 2014 | 16
Photo courtesy: Natya Tatiteni
A Different Vision DIPENDRA MANOCHA In Conversation with NATYA TATITENI
Ashoka Fellow Dipendra Manocha has has used technology to build a communications and training infrastructure that enables the disabled to put their abilities to work alongside other citizens in mainstream society. In an interview with Natya Tatiteni, he reveals insights about leading innovation in the sector today.
H
How do you see the direction of innovation in India in the disability sector?
Technology innovations in the disability sector have only been recently introduced in India. There may be a lot of inventions around, but real innovations - where the full cycle of development and innovation meets the end users - is still early stage. There is a lot that needs to happen. Even beyond technology, innovation happens at a very small scale and in few pockets. There is no scaling up for them. We are quite behind! There are innovations that can have strong impact benefitting the larger community, but, sustainability of technology professionals and their innovations is a very big question. Due to low remunerations in the disability sector, innovators either look at small scale or see this as a voluntary sector where the accountability is less; leading to output that is not up to the mark.
What is the biggest flaw in innovation for people with disabilities? How can we change it? Once an innovative solution is designed, ensuring that it reaches people who need it is the biggest challenge. End-users in India have been tranquilised by the idea charity and aren’t motivated to buy solutions that improve the quality of their life. Charity and subsidisation has killed acceptance of innovation. People prefer items that are well-marketed irrespective of whether these items can really improve their lives. They don’t understand the value of innovations or realise the difference it can make in terms of their independence and dignity of life. There is a slow, gradual realisation that innovation plays a role in a person’s life. Sadly, none of the innovations in the disability sector have resources to market themselves strongly in the face of this completion and market conditions. Maybe, in time the process will speed up. Maybe then, the quality of life will take predominance over a few hundreds of rupees.
17 | FELLOWCONNECT SEPTEMBER 2014
How do you see the government accepting and leveraging innovation? Do share some insights from your work. Currently, the gap in the government is the belief that it should not involve itself in developing innovations or funding the research and development of innovations. There is no risk involved. Any decision that is risky or involving uncertainty is not allowed. This is a big policy issue. A certain level of protection has to be provided to people who are trying to bring innovations to the government. With the existing policy infrastructure it is easy to victimise a person. However, the one thing that the government feels proud about is scaling a proven innovation. This is where we have positioned our solutions. We take the government’s help for scaling our solutions through charity programmes and existing schemes. Even though no credit is shared, the aim is to reach out to larger numbers.
A certain level of protection has to be provided to people who are trying to bring innovations to the government.
What was your experience like in developing SmartCane? The SmartCane is one of the first of its kind projects developed in the disability sector. It is a cane with sensors on the handle to detect waist-above obstacles from a distance. It protects the visually challenged from protruding objects. The cane has been developed in partnership with Saksham, IIT Delhi and Phoenix Medical Systems bringing together the academic knowledge, the corporate know-how on sustainability of this product, and the NGO perspective. We learnt first-hand what it takes to take a product to the end-user. In a partnership, motivation for building and taking the product out to the market has to exist with every person involved in the process. For a commercial company like Phoenix, Smartcane was not motivation enough, so we had to create a sustainable working model. Unless there are 10,000 of these canes going into the hands of the end users, what is the point of developing such a technology? This interesting approach allowed us to work together to create a commercially viable innovation. We had to find solutions for challenges that previous innovations faced including risk in innovation acceptability, risks associated with how people use it, marketing of the product. Normally, we think that if there is a solution that solves the problem, that’s enough. But, that’s not enough. For the Smartcane to be carried in the hands of a woman or a girl meant that it must have attractive colour combinations and does not compromise the look and the personality of the person carrying it. This aspect was new and interesting for us.
Photo courtesy: Natya Tatiteni
What is that one personal impact story, that has affected you and you would like to share? This is about a person who I mentored and may soon become my boss! A young man who lost his vision after graduating his mechanical engineering course. He wanted to continue his passion for engineering and kept asking people for advice in terms of avenues for his skill. Everyone he met - experts and others from the disability sector - advised him to give up engineering and take up subjects that blind people work in. A number of them mentioned that disability and engineering don’t go together. He was depressed and had almost given up. That’s when I met him. He came to me for banking exam materials. When I saw his profile, I couldn’t stop myself from questioning his change in career. I mentioned the possibility of shifting to software engineering through volunteering where he could learn and contribute meaningfully. An introduction to another volunteer, under who he later interned and learnt software skills, paved the path for his future. Now, this young man is part of the International Daisy Consortium and is known for his expertise in the area of digital publishing. He is cherished and sought for by people across the world.
Ashoka Fellow Dipendra Manocha uses technology to build a communications and training infrastructure that enables the disabled to put their abilities to work alongside other citizens in mainstream society through his organisation Saksham.
FELLOWCONNECTSEPTEMBER 2014 | 18
Coming of Age
C
By APARNA DAS
Coming of age is a very young person’s transition from childhood to adulthood. But how does this fit into a write up about special needs?
India’s journey with special needs, though not a new one, is finally coming of age today. Consider this; the number of special schools that are mushrooming all over the country, a ‘special educator’ is a sought-after job today and the RTE Act now mandates mainstreaming of children with special needs. As a professional who has been in the field for over two decades now, and as
a family member of a person with disability, I have to admit that it does seem like a little too late. One feels somewhat envious of those countries and cultures where the wave of awareness began a long time ago. Wikipedia’s explanation of the term “coming of age” goes on to say:
most importantly, they require places that they can consider their homes as they prepare for the inevitable. Hard as it may be to accept, the parents of these adults are not growing any younger.
The age at which this transition takes place varies in society, as does the nature of the transition.
The services available for adults with disabilities — i.e. institutions — strip the consumers of any individuality and indeed dignity, in the attempt to create one size that fits all.
I believe my role as a professional and as a family member is to be part of this transition in as positive and non-judgmental a manner as possible. Yes, we are coming of age in this journey with special needs. And ‘age’ brings a whole new dimension to the ride. The young population that once needed services when they were too few has evolved into a group of people in their 30s and 40s. They are individuals who are no longer able to avail of, and indeed, are no longer in need of the services provided by special schools. They require a stimulating environment that will help them grow as individuals; a place where strengths and interests, rather than deficits, become the focus. And
And thus ARUNIMA was born. The project’s name “ARUNIMA” literally means ‘the glow of dawn’. Significantly, the program symbolizes a new dawn in the era of services provided to adults with disabilities, and in this case, Autism. The organisation’s vision is to provide opportunities for people on the autism spectrum to live a life of dignity and maximum independence. Open throughout the year, the project presently houses twelve people on the autism spectrum apart from providing day services to local students. Service users come from different parts of the country, and around the globe, but their common search is for a place that would ensure continued growth, a life
Stim, stims or stimming is short for “self stimulation”. Almost everyone does it (tapping feet, cracking knuckles, twiddling thumbs), but in autistic people these behaviors are more pronounced and may seem downright strange. Autistic people often engage in stimming when they are stressed, to self regulate and sometimes to express emotion. Common autistic stims are: rocking back and forth, headbanging(not the music kind), finger flicking/ rippling, spinning, humming, repeating words or sounds and complex body contortions. 19 | FELLOWCONNECT SEPTEMBER 2014
Photos courtesy: Aparna Das
of dignity, and lifelong support to their beloved family member is what brought them to the ARUNIMA project. So what does life at ARUNIMA look like? The program is a multi-pronged one, which includes activities aimed at developing social skills, communication, motor skills, self help skills, domestic skills, functional education and music. As in any regular home, everyone wake up between 6:30 and 7:00 am. We operate out of two buildings so that there is a clear demarcation between home life and developmental activity (school). The training center is where we spend the next four hours at work and play following a structured program based on the principles of Applied Behavioral Analysis (ABA) – a method found to be most effective in the training and education of persons with Autism. Once we return to the residence, the time that is left is spent eating, resting, watching TV, singing together, taking evening walks, buying groceries.Yes doing what one would do in a regular household. Our philosophy of respect for the individual is singularly focused on ‘inclusion’ and consciously preempts the slightest hint of ‘institutionalization’ in the atmosphere. Our program is about life, opportunity and growth. We take pride in the ability
and motivation to provide this. Any given week includes an outing, to a public place. This could be for a picnic, lunch at a nice food court in a nearby mall, a salon appointment or even a trip to a museum. Are there challenges? Yes of course. There are obvious needs such as trained and dedicated staff, and resources. But one challenge we did not anticipate is the discrimination that people with disabilities face by those who work with them. ARUNIMA has always believed in the absolute right of people with special needs to be out and about like anyone else in society. However, we have seen unbelievable resistance from the larger public in accepting “such people” in their midst. Despite our efforts to spread awareness the prevailing view is that people with disabilities need to be confined to places where the reality of their existence does not ‘disturb’ the rest of the world. Is there such a place? Maybe not. Surprisingly, it is educated people who resist change the most. Take an example of our evening walks; we step out of our gates to the hostile stares of our neighbors. One ‘false move’ — such as a stim — can result in calls to the landlady about the odd people she has let her house out to and the great disturbance we are to this peaceful society. However, the shopkeepers and roadside vendors look forward to our daily visits and ask after us if they don’t see us for some time!
Initiatives like ARUNIMA are setting the trend of looking at life after school. Even more relevant is the mostly unspoken fear that haunts the parent community; life after them. The population of people with special needs is growing rapidly — both in size and chronology — and available statistics reflect an alarming increase in the incidence of the syndrome. From its inception in 2011 to the time of writing this article, our project has taken its participants on a journey of discovery and learning. But most importantly, it is an affirmation for families that there is hope beyond them. Still young, we look forward to the time that we can say that services for adults with disabilities in India have finally come of age. We hope we can look back at our own role in this with pride, and some satisfaction that we were on the right path.
Aparna Das is the Founder Director or ARUNIMA, a project for adults with autism.
FELLOWCONNECTSEPTEMBER 2014 | 20
Building Bridges
W By DR. DARIN GUNESEKERA
How can we approach social housing in an inclusive manner? Ashoka Fellow Darin Gunesekara shares his experiences from Sri Lanka.
Photo courtesy: Dr. Darin Gunesekera
Within the inner city of Colombo areas of Dematagoda, Welikada, and Maradana is the Wanathamulla neighborhood. It is the site of a social housing complex called Millennium City. It is also called REEL in reference to its origin as a first generation Social REIT (Real Estate Investment Trust). Some features of a S-REIT are relevant to social entrepreneurs. To begin with, I will highlight two such differences: empathy and inclusiveness. The S-REIT project provides housing for the entirety of several blocks or estates of slum or shanty dwellers in the near vicinity in one place. The new housing system is modern and integrated within high-rise affordable housing blocks. Usually, entire slums who have had to vacate from their settlements are relocated in the building complex as the S-REIT is community-focused and inclusive. The project resulted in new homes of economic value for old homes that they give up. I would often tell the people involved that, if they squatted on good ground, they will get a better home.
21 | FELLOWCONNECT SEPTEMBER 2014
I campaigned with the Government to successfully adopt this plan for the re-housing of the inner city. All the slums and shanties were gazetted as squatter lands and tenement lands. The people living on the lands were officially recorded in the gazettes entered the scheme. Further, the development plan also envisaged many upmarket areas. These areas were within the REIT and subject to planning control as well. So this plan included the rich and poor, provided they lived or wanted to live in the project. The full attention of the city was drawn into this development through infrastructure provision keeping the plan inclusive. This is in stark contrast to private commercial business. In fact, the largest real estate company, a well-known group, which provided over 50% of advertising spending in Sri Lanka at the time had its own exclusive suburb called ‘Millennium City’ under construction at the same time. There were many commercial condos also being built. All of these projects were based on exclusion. They excluded some from buying these properties and set new rules on those who did in the form of covenants restricting use and building change. We did not. Our philosophy of freedom and democracy precluded that ethos. Our framework was an open process of empathy, and it was transparent as well as inclusive. The project managers
fc | SRI LANKA
Photo courtesy: Dr. Darin Gunesekera
and end users saw everything so that they knew that there were no hidden sources of profit. Now, a profit making standard business does not operate like this. Many developers, architects and planners had given me their views of the rehousing development for the poor. Our office was filled with brochures and our computer with photos. Then one day when I was reading my newspaper at breakfast, someone passing asked me whether I was going to buy a house. I realized that he had seen the outside of the newspaper, which was covered with color pictures of houses for sale. Then it hit me. We, in our project, are only the financiers of poor people’s housing. If I went to a bank to get a mortgage for building my house I would not expect the bank manager to tell me what house to buy. So we went through the communities and discussed this with them. They spoke of what they really wanted and opened up when they realized that they could take charge of their own lives, their own homes.
We gave the community confidence and courage to ask and get what they wanted subject to budget constraints. We emphasized that their suppliers were driven by market needs and not the state. The buyer decides. Finally they designed and purchased their own homes just like anyone else but at their budget. They were driven to do this by their own wishes. This is quite in contrast to the Stalingrad mentality of private sector builders when it comes to social housing. The fact that there were parameters as well as specific choices for the people in the project ensured that it was a sustainable solution. As you can see empathy and inclusion are the essences of social entrepreneurship. It differs significantly from private, commercial entrepreneurship. It has to. One must recognize that there are fundamental differences, arising from the foundation of the two approaches. Social projects can also be efficient and profitable but it must be recognized that they demand principles that are not found in private capitalism, or in state capitalism.
The real estate group that created Millennium City went bankrupt and was pushed to the bottom of a debacle in the housing sector. Since their bust, as it is blamed on individual rather than systemic defects, there has been a higher focus on private groups. The project that we launched, on the other hand, made money for the stakeholders. Today, both the people and the landowners want the principles of our scheme in what is current in the city.
Dr. Darin Gunesekera was the first Ashoka Fellow from Sri Lanka. His work was judged one of the five best practices in affordable housing in the world and awarded a certificate by UNHABITAT in 2009.
FELLOWCONNECTSEPTEMBER 2014 |22
Changing Perspective By ASHOKA THAILAND STAFF
P
Preeda Limnontakul was born and raised in Bangkok. His business skills were honed from a young age by helping with the family shop, but rather than finding the work a chore Preeda reveled in it. In particular he embraced finding ways to make things better and when the available tools or methods couldn’t do the job he invented his own. It didn’t take long for people to see Preeda was different. Instead of asking his parents to buy toys like other children, he learned to make toys himself. These skills followed him into adulthood. After earning a degree in applied physics, Preeda worked in a private company as a product specialist where he redesigned the calibration system for weighing equipment. His method was implemented by many engineering companies, and saved mil-
Photo courtesy: Preeda Limnontakul
lions of baht in maintenance and repair costs. At 29, Preeda was already a successful and respected businessman. In 2001 the trajectory of Preeda’s life took a radical turn when a car accident left him severely disabled with a spinal cord injury. To add astonishing personal insult to an already devastating injury, Preeda was forced to resign from his job due to the company’s regulation against hiring a person with severe disabilities. But in a move every bit as breathtaking as the accident and resignation had been tragic, Preeda used his recovery time at the hospital to launch his first independent business idea and became a millionaire. A successful businessman entered the hospital in 2001 but an inspired social entrepreneur emerged: Preeda would
23 | FELLOWCONNECT SEPTEMBER 2014
marshal his considerable skills and insights to tackle the problem of creating opportunities for other people with disabilities to enter the workforce. Like most nations, Thailand struggles to incorporate people with disabilities into mainstream society. According to the Thai National Office for Empowerment of Persons with Disabilities, there are nearly 1.9 million people with disabilities in Thailand, constituting approximately 2.9 per cent of the population. A 2009 survey revealed that 65% of persons with disabilities over the age of 15 were unemployed. Among the employed only a small percentage worked in professional occupations, while the majority work in agriculture and fisheries.
fc | THAILAND
The Thai government attempted to alleviate this problem through the Persons with Disabilities’ Quality of Life Promotion Act. In short the act mandates employers to have 1 disabled person for every 100 employees or pay a fine that goes into the Rehabilitation of Disabled Persons Fund, which provides grants for skills training projects and entrepreneurship loans with no interest to assist people with disabilities. A sensible and straightforward program from a bird’s eye view that struggles with reality on the ground. Thanks to the combination of a lack of awareness of their rights among the disabled; apathy on the part of businesses; and, of course, the societal cancer that is good, old fashion corruption; the act fell well short bring the disabled out of the shadows and into the societal light. While the Persons with Disabilities’ Quality of Life Promotion Act, inevitably, failed to address the problem out in one fell swoop; it did succeed in creating a mandate and infrastructure for someone with the skill, insight and desire to wield it. Someone like Preeda. In 2006, one of his early projects dealt with the fact that most unemployed disabled people lack the skills demanded by most companies. Unlike conventional training programs, Preeda’s uses software designed specifically for people with disabilities as a tool to train and build their competitiveness. The first pilot required designing telemarketing software customized for callers with various physical disabilities. Within 15 days of training, the 30 trainees had a success rate six-times higher than average callers. Preeda had successfully created a win-win strategy to help private companies fulfil the disability employment requirement by supplying skilled disabled workers, while effectively building capacity of people with disabilities to truly become competitive equals. Buoyed by this success, among others, in 2012 Preeda founded the Will Share Association (WSA). Simply put, WSA identifies common interests of employers and prospective disabled employees and then mobilizes funds
under existing legal frameworks. WSA is currently piloting collaborations with 3 universities in Bangkok and 7 companies in industrial estates, all of which are funded by the Rehabilitation of Disabled Persons Fund. Unlike most training programs that tend to create ghettos for people with disabilities, Preeda is integrating them by strategically setting up his programs inside highly respected universities. The presence of people with disabilities and sharing of spaces is bringing greater public awareness regarding people with disabilities, triggering both groups to learn to coexist as a community and influencing universities’ policies toward people with disabilities. The success of these pilot projects has earned Preeda’s training approach recognition from the government. Within 5 years, Preeda plans to fill at least 15,000 positions in the private sector and spread his training program to other ASEAN countries. In May 2014 Preeda was selected as an Ashoka Fellow. His vision and creativity is widening professional options for people with disabilities in Thailand and, soon, across Asia. He’s fostering the self-confidence of people with disabilities and clearing paths for them to participate fully in society, which in turn changes public perception toward them from being “pitiful and unfortunate” to competent and professional: equal members of society.
Photo courtesy: Preeda Limnontakul
According to the Thai National Office for Empowerment of Persons with Disabilities, there are nearly 1.9 million people with disabilities in Thailand, constituting approximately 2.9 per cent of the population. A 2009 survey revealed that 65% of persons with disabilities over the age of 15 were unemployed.
This article was a contribution from the staff of Ashoka Thailaind
FELLOWCONNECTSEPTEMBER 2014 | 24
Deepening Community: Finding Joy Together in Chaotic Times By PAUL BORN Nowadays, many people feel alone in the midst of the crowd—linked through a series of shallow relationships. The reality is that community has changed a lot. So often our social innovations take for granted that community exists already, and that it can provide a foundation for the change we desire. To build communities that are healthy, safe, and resilient, and for economic development, or even to achieve collective impact within our communities, we need to feel rooted. Tamarack Institute founder Paul Born wrote Deepening Community: Finding Joy Together in Chaotic Times to show us how this is possible. Visit his website for more information.
A
This is an excerpt from Deepening Community. This article first appeared in the Stanford Social Innovation Review on 1 May, 2014.
A theme of this book is that because of the complexity of our times, community is not so much chosen for us as by us. It is not a Pollyanna choice. It is a choice made in the midst of very real struggles in our own life and in our world. As chaos is visited upon us because of our environmental and economic choices, we will be called on to make many difficult decisions. These decisions will indicate our allegiances. Will we pull our borders in and be satisfied with shallow community? Will we turn against others in fear-based community? Or will we move toward others to create joy-based deep community? As we have seen, the latter choice is a process; it is one that is worth reviewing here as we come to the close of this book. Sharing Our Story The journey begins as we share our stories, be they stories of fears or of joy. Sharing helps us to open up, to become vulnerable, to hear other people’s stories. Thus do we begin to work together to distinguish truth from untruth and rational fear from irrational fear, to determine what we might do together. When we really hear one another, the bond of community is forged between us. We smile at each
other; we feel warmth and joy as if we are home. In these times, we must make it a priority to take time for community. We need one another now, and we will need one another even more as times become more difficult. Enjoying One Another
acts of caring that happen often forge a sense of belonging. When we feel we belong, we feel safe and fulfilled, and when we feel safe and fulfilled, we can dare to develop hope and common purpose. We have the strength to overcome, together, almost any challenge that comes our way. Building a Better World Together
As we continue to share our stories, and do so with the same players over time, reciprocity and trust grow between us. This is an investment in deepening community, and the dividends this investment pays will be crucial to us in times of need. When we enjoy one another in a community we have invested in, we become a collective witness to the events around us. We can celebrate our achievements and those of our children together. How sweet are the victories and even failures that are experienced in community!
The above three acts of community—sharing our stories, enjoying one another, and taking care of one another—give us energy for the fourth act of deepening community: building a better world together. In fact, we become a force for change that is unstoppable. The work of restoring our communities feels light and possible. We no longer feel alone in our fear or hopeless in our dreams; rather, we have the courage to see our dreams become real.
Taking Care of One Another
Dreams and Reality
Reciprocity and trust have a wonderful effect: reaching out to help one another becomes as natural as breathing. We take care of one another not only because it is the right thing to do, and not only because people will help us if we help them, but primarily because the bond of love that has grown between us moves us to do so. Mutual
As we know from the life of Martin Luther King Jr., dreams of substance have a way of becoming real. King had a dream, and his dream, of justice between the races, has come true—not fully, not without many backward steps, not without so much more ground to take, because nothing in life is perfect, but true nonetheless.
25 | FELLOWCONNECT SEPTEMBER 2014
A memory from my Mennonite youth—I hope that you will allow me one more—bears on this topic of dreams, or daydreams, in my case. I performed a task every day from the age of six to eighteen, one with an unintended consequence (unintended by my parents, who gave me the task): learning to dream. For two or more hours a day, I collected eggs from the nearly twelve thousand chickens on our farm—I was assigned to gather 350 dozen eggs—walking down aisles of cages behind an egg wagon that was six feet long and about three feet high, as it lumbered along on its large balloon-like tires. As I threw my arms back and forth with the rhythm of a fly fisherman, picking up three eggs in each hand and laying them into cartons, my mind could be otherwise occupied. I learned to daydream in extreme detail. Not only did I come up with big, bold ideas, but also I used the time to break them into the micro details and processes that would see them come to reality (if only in my mind). I grew up wanting to make a difference in the world, so this skill of mentally turning dreams into reality has proven to be useful. I have been extremely lucky both in my dreaming and in finding so many colleagues and friends (my deep community) with whom to dream the same dreams together. Over a period of thirty years, the art of dreaming in detail has allowed us to start and/or build a dozen organizations, raise an estimated $100 million for charitable causes, and help more than a quarter million people live a better life. In my work as director of Tamarack Institute, I have been privileged to lead people nationwide in community initiatives to reduce poverty and increase the riches of intentional neighborliness. For me, large-scale initiatives to bring together the poor, existing community organizations, the efforts of governments at all levels, and private and public businesses begin with dreams. Dreaming is my way of considering every possible angle and all the scenarios of a situation well before it becomes a reality. For me, a dream is much more than a wish; it is a full-color, multidimensional window into the future.
For example, more than twenty years ago, I was privileged to lead an organization that provided reconciliation experiences through job training for young people living amid “the Troubles” in Northern Ireland. Several times a year, twenty young people—ten Catholic and ten Protestant—arrived in Cambridge, Ontario, and were billeted for three months in the homes of people, many of who had come from Northern Ireland or the Republic of Ireland. The program was based on the need to break the cycle of fear and hatred between Protestants and Catholics and, in turn, stop the violence. Many of the Catholic young people with whom we were working had never had a Protestant friend and had never been in the home of a Protestant, and vice versa. Our work was to challenge the stereotypes and, over a three-month period, build a new story in the hearts and minds of these young people. Many of them were from lower-income communities and, given the state of the economy in their country, had found it difficult to find jobs. They were vulnerable to the violence in their communities, for the prospect of a bleak future, economically, made them fertile ground for terrorist recruiters. We saw job training as a way to recruit them into the reconciliation-training program we were offering. Once these young people lived, worked, and partied together away from the norms and patterns of their native neighborhoods, we were able—they were able— to change their attitudes and beliefs forever. We learned that fear and hate, when challenged appropriately, can be changed, particularly when there is hope for a better future. The program was part of a much larger peace effort that has since stopped the killing in Northern Ireland. It is because of dreams—not just mine, but those of many fellow workers in this great task of deepening community—that many thousands of people have seen their poverty reduced and have more work, better housing, healthier and safer families, and affordable transportation. It is because of dreams that thousands of children
fc | CANADA are happier in better day care, have more friends, and receive books on their birthdays and presents at Christmas. It is because of dreams that people with developmental disabilities have more community and meaning in their lives. And it is because of dreams that whole communities have learned to change their circumstances, reduce poverty and crime, and improve their neighborhoods and conditions for generations to come. The needs of our families, neighborhoods, and countries are still great— and, in these chaotic times, will become all the more so. But we know what we must do as a community. We must keep dreaming and sharing our dreams and hopes with one another. And we must keep making these dreams come true by acting on them as a community but never against another community. Acting in this way will be challenging but will be done with a lightness of being if we look out for and include one another. It is in the work of restoring our neighborhoods, cities, and beyond that we will see the result of dreams that are dreamed in deep community. And what is deep community? It is the process of finding joy—much joy!—together.
Ashoka Fellow Paul Born is the cofounder and President of Tamarack— An Institute for Community Engagement, a global leader on issues of place, collective impact, and community innovation. The author of four books, Born is internationally recognized for his community-building activities that have won awards from the United Nations and as a senior fellow of Ashoka, the world’s largest network of social innovators.
FELLOWCONNECTSEPTEMBER 2014 | 26