Avelino de Sa: Supporting Others Step Out of the Shadow

Sheela Jaywant

Nothing gave away the fact that Avelino de Sa was born with cerebral palsy as he sat behind the desk in his first floor office opposite Panaji Head Post Office.

A certified investment consultant, Avelino de Sa has been self-employed for the last 12 years and has over 100 clients. In 2003 he started the Disability Rights Association of Goa (DRAG; www.disabilitygoa.com) He explains what DRAG is: “It’s a collective of disabled persons. We include all types of disabilities. There are people who are doing various things – working in the government, private sector, self-employed and unemployed.

“An individual finds it difficult to take up and resolve problems. An Association makes an impact. When we approach a department to implement the rights mandated by the State Government, it does something about it. Our Association has received a lot of help from Cidade de Goa, Syngenta Ltd., The International Centre Goa, Travel & Tourism Association of Goa and the Goa Chamber of Commerce and Industry. The media has also been very helpful in highlighting our issues.”

“DRAG gets cases where qualified people have been denied promotions or employment because of a disability. Goa has a State Disability Commissioner whom disabled people can approach in case of injustice yet people are not aware about it.”

“DRAG was instrumental in Kadamba Transport Corporation buying two wheelchair accessible buses. It informs builders, colleges, schools about wheelchair friendly architecture. However many temples, churches and mosques are still not accessible to the disabled thereby denying them the fundamental right to worship”.

Avelino is a member of the Local Level (North Goa) Committee of the National Trust of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities.

“My parents didn’t think about any special school or different education for me as in those days there was no choice,” Avelino tells me. “I had to be educated, hence was sent to the nearby school, like my siblings or like any other child. My mother regularly took me to the Spastics Society in Mumbai so that I got the correct kind of physiotherapy and other treatments at the right time. Today parents send their disabled children to special schools and I think these children lose out on many things as they do not get to interact with regular children.

“At the Red Rosary High School, Mirama, I was expected to do my homework and take tests and exams like anyone else. It wasn’t considered a big deal that I had a physical problem with movement. After my tenth, I did my HSC from the People’s High School, Panjim and my graduation from S. S. Dempo College of Commerce and Economics, Panjim.”

As we talk, Avelino takes notes: “I keep writing whatever comes to my mind, so that later I can tackle the points.” A cupboard shelf is full of trophies that he hasn’t told me about, from the Rotary Club of Panjim Riveira(for Vocational Service to the Disabled, 2009) and other institutions (for exceeding targets!! for Mutual Funds and other investments). On prodding, he tells me a charming story: “In 1994, I was in the third year of my graduation, in SS Dempo College. My classroom was on the first floor. I requested Principal Bhende to shift me to a ground floor class as I had difficulty in climbing stairs. He shifted the entire division to a room on the ground floor so that I had the familiar faces around me also.”

After a hectic but well-chalked out daily schedule, Avelino, the second youngest of five siblings, surfs the net and listens to gospel and Konkani songs. “I’m not fond of reading; with friends I keep in touch via the mobile phone.” “I’m involved in Church activities.” I am also a member of the Crusaders for Jesus with Mary and the YMCA Panjim

What about the future? “Parents still don’t know where to take their disabled children and flounder in desperate confusion from place to place. Which means that the doctors, too need to be educated about what’s available in Goa, so that they can guide their patients correctly. I leave his office with his assurance that DRAG is working on that.”

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

Wed a disabled person, get 50,000 from state govt

It’s a bitter pill to swallow, but in India, the physically challenged have not been integrated into mainstream society. And marriage is the one institution where the stigma of being differently-abled is starkly highlighted. Now, the state government has decided to rectify this and is planning to launch a scheme where anyone marrying a disabled person will be awarded Rs 50,000. Social justice minister Shivajirao Moghe said the idea was to encourage marriages between the “disabled and the able-bodied’’.  Any person who marries a person with 40% or above disability—one who is certified as disabled—will be eligible. The government is of the opinion that the reward scheme will promote greater integration of physically challenged people into mainstream society, and will be implemented across Maharashtra. According to the 2001 census, there were 15.69 lakh persons with disabilities (PWDs) in the state. No data was available on unmarried PWDs.

While the plan has been welcomed in some quarters, many NGOs and activists have expressed their doubts over whether a monetary incentive is the way to go. Naysayers include Raju Waghmare, who is employed as a programme officer for handicap rights with the Human Right Law Network. “The scheme will encourage an able-bodied person to marry a financially independent disabled person for monetary gain,’’ he said. ‘We must go out to find partners’ Mrs. Varsha Hooja, trustee, ADAPT, an action group that promotes the cause of the disabled and others working and living together, felt that first priority should be given to creating awareness, promoting a disabled-friendly environment, and sensitizing society towards the abilities of the physically challenged. “Marriage will follow,’’ she said. On the other hand, the Handicap Welfare Association—a non-profit organization for the disabled by the disabled-—has welcomed the move. “If implemented in letter and spirit, the scheme could be a step towards the empowerment of the differently abled,’’ said Ravi Subbaiah, president of the association. To increase the reach of the welfare scheme, he cited the need to set up a disabled-friendly public infrastructure. “The disabled need to go out and interact with people in order to find a partner,’’ he said. Unfortunately, most cities in India do not have this infrastructure.

Maharashtra is not the first Indian state to award reward schemes. Goa and Karnataka governments have already taken steps by providing tax rebates and perks to corporates employing PWDs, a move that Waghmare believes is more effective towards integrating the physically challenged in society. Goa also has a similar marriage reward scheme. To prevent misuse of funds, social welfare officers will be in charge of implementation. The social justice and special assistance departments have a prepared a detailed proposal, which has been forwarded to the planning department for fund allocation.

Pratibha Masand Times of India, 9th October 2010

Disability and Census of 2011

Counting the “invisible” children of Mother India.

While the current focus of political debate is on ‘caste and census,’ there is another important aspect that deserves attention. This concerns disability.  For decades after our independence, there was no effort to actually count how many of us have any disability. There were estimates-informed or otherwise- but no factual figures. All our  government’s plans and budgets, rules and regulations, proclamations and posturing were built upon shaky foundations. A new Ministry was created, staffed and has been operating for several decades on that basis. It seemed to suit every one, except the millions who were thus rendered ‘invisible’. This lasted for 54 years. But, despite their  ‘invisibility,’ the disabled and the NGOs dealing with disability made progress on the ground.

Let me illustrate with an example. There was no government or non-government organisation looking after the needs of children with cerebral palsy, till a young mother of a child with cerebral palsy set up the very first Spastics Society of India, Mumbai (now known as ADAPT-Able Disabled All People Together)) in 1972. The handful of children included her own daughter. Dr. Mithu Alur, our Chairperson, had thus created a unique institution, offering all facilities under one roof, including diagnosis, physiotherapy, physical aids, schooling, parental counselling, etc. Over time, these services also came to include research, teachers training, admission of older children in “normal” schools and colleges, job-oriented training and placements and so on. This model is now replicated in 18 States. Almost all the organisers have themselves been trained at Mumbai. These NGOs operate independently, while forming a Regional Alliance, constantly coordinating, cooperating and learning from one another.

During preparations for the Census of 2001, several NGOs (including us) approached the Census Commission with the request that they should also count the disabled in our country. Obvious arguments were put forward. Approaches were also made through the concerned departments of the Government. Unfortunately, nothing worked; we were simply told that the disabled could not be included. The NGOs were persistent; the matter was taken to the political level. Eventually, it was decided that the Census would include, for the very first time, a counting of the disabled. However, this historic decision was taken at a very late stage, in the face of consistent opposition by the Census Establishment. Perhaps, their subsequent actions were reluctant and grudging. Perhaps, there was not enough time for the necessary preparations. It is also possible that, despite their best efforts, framing of appropriate questions, their translation into the required languages, training of the enumerators etc. left much to be desired. For all these reasons, the results of the Census 2001 were deeply disappointing for the disability movement.

For example, the Census of 2001 concluded that there were only 2.13 % or 21 million Indians with any kind of disability. This was a fraction of the estimates by most experts. This has since been amply proved by a World Bank report of 2007. This report was “prepared at the request of the Government of India”. In fact, it acknowledges “the guidance of officials of the Ministry of Social Justice and Empowerment, guidance provided by an inter-ministerial Technical Advisory Group set up for the work by MSJE and consisting of representatives from the Ministries of Health, Labour, Human Resource Development and Rural development, as well as an NGO representative.” Similarly, it acknowledges the help of officials in several States including Rajasthan, Karnataka, Orissa, Uttar Pradesh and Tamil Nadu. In short, the World Bank Team had the full backing and support of the Government of India and many State governments. The report is entitled ‘People with Disabilities in India: From Commitments to Outcomes’. It concludes: “While estimates vary, there is growing evidence that people with disabilities comprise between 4 and 8 per cent of the India population (around 40-90 million individuals)”

Obviously, there is a vast difference between 2.13 per cent or 21 million ‘counted’ by the Census of India, and 4-8 per cent or 40-90 million estimated by the World Bank team. Several NGOs, including ADAPT, have been interacting with the Census Commission, individually or in groups. The Commissioner, Dr. C. Chandramauli, has been positive and open-minded. In a recent letter to him, based on our own experience, and consultations with our regional partners and other experts, we have made a number of recommendations. These take into account the Commission’s constraints of space and format, the work already done, and recommendations made by others in the disability movement, like a Delhi-based group which had also held wide consultations. For example, along with the Delhi group, we have endorsed the inclusion of four types of disability in seeing, hearing, speech and movement, repeated from the 2001 census. We have also endorsed the recommended inclusion of Multiple Disability and Mental Retardation. But, since the latter expression is no longer used, we propose “Remembering and Concentration” instead. Thus, there is already an agreement on the types of disability.

Equally important is the framing of questions under each type. Questions must be activity related; these must also be relevant to our circumstances; only then can these elicit accurate responses. For example, the question suggested by us on speech is: “Do you have difficulty in speaking in your usual language?” The latter language is included because, in the course of a research study with UNICEF involving 31,000 children, we had found that children who had migrated out of their home states had a linguistic problem, which may be reflected as a speech problem. We have also submitted Hindi translations of these easy-to- understand questions to demonstrate that similar translations in other languages could be equally easy and understandable. Contrary to speculations, there is thus a growing meeting of minds between the Census Commission, on the one hand, and several sections of the disability movement, on the other. Thus, we can hope that the Census of 2011 will finally be able to give us a correct count of the disabled in our country, making them truly visible.

By Kamal Bakshi
(A former ambassador, and Vice-Chairperson of ADAPT, Mumbai.)

© Copyright 2000 – 2009 The Hindu

Enabling the disabled

With sensitised education for the disabled high on Human Resource Development Minister Kapil Sibal’s agenda, all eyes are on the 2011 Census which will provide crucial statistics on the number of disabled Indians and what disability they suffer from. But a raging dispute has broken out within the disability sector about the exact question in the Census questionnaire and Census Commissioner Dr C Chandramouli is being lobbied by different groups.  World over, asking the right question has proven the key to getting accurate disability figures. According to a 2009 World Bank Report, in countries which ask a simple yes/no question, disability statistics range from 0.5 per cent of the total population (Nigeria) to 3.8 per cent (Ethiopia).  In countries which list the types of conditions, the number is only slightly higher. But in countries which ask specific activity-related questions (for instance: do you have trouble walking/ remembering?), disability statistics range from 10 per cent (Poland) to 19.2 per cent (United States) of the country’s entire population. The more specific the question, the more likely it is to yield a higher percentage of disabled people.

The Indian Census asked a question on disability for the first time in 2001 (see box). Based on this question, the Census Commissioner estimated that 2.13 per cent of the population, or roughly 25 million Indians, were disabled.  But this  number has been criticised for being too low. Javed Abidi, a disability activist and the head of National Centre for Promotion of Employment for Disabled People (NCPEDP), says the low number is because the question in the 2011 Census merely listed the type of conditions, which world over have excluded many disabled people. He adds that the Census enumerators in 2001 were not sensitive. “In fact, they did not even identify me as disabled,” he  complains.

Mithu Alur, founder of Able Disable All People Together (ADAPT, formerly Spastic Society of India) says when she  spoke to Chandramouli, “he admitted that the 2001 data for the disabled was not robust, as they had very little time”.  But while there is agreement on the need for a better question in the 2011 census, agreeing on the details has run into rough weather. Two drafts have emerged amongst the competing NGOs, each accusing the other of trying to hog the limelight.  All are agreed that the new question on disability must be activity-based (like in the US and Poland), but there is a dispute about what the exact question will be.

The first draft is led by a group that includes Abidi. This draft was the result of a day-long roundtable here on March 31,
co-organised by Abidi, and attended by “representatives from 22 states and the Census Commissioner himself”, according to him.

The second draft has been formulated by ADAPT. Alur says these questions are based on a widely accepted, UN-approved standard, called the Washington Group on Disability Statistics (see box). These questions are slightly different from the March 31 model. Alur says her suggestions “are more explanatory and inclusive”.

Alur charges Abidi with not including her NGO in the March 31 deliberative process, and of hijacking the disability agenda. Abidi strongly denies this allegation. “I sent an email to Dr Alur inviting her to the meeting. She did not come, but emailed me the sample questions that she suggested,” says Abidi. “Her questions were raised before the forum, and rejected.” Alur denies this, saying it was a general email which did not “contain any details of the meeting”.  Abidi feels ADAPT’s sample questions are too “western” and unsuitable for Indian conditions. One of the questions the ADAPT wants to ask is “do you have difficulty in walking or climbing stairs”. “Half  of Vasant Kunj will say yes to that question,” says Abidi.

Both Alur and Abidi have a personal stake. Abidi is wheelchair-bound. Alur’s daughter Malini was diagnosed very early with cerebral palsy. Both groups had joined hands to demand amendments to the Right to Education Act in August 2009 to make it disabled friendly.

Regardless of which version finally makes it to the Census questionnaire, disability activists say versions are  improvements from the 2001 Census question as they are more descriptive, and expand the word “mental” in the 2001 question to involve specific forms of mental illness.  Chandramouli could not be contacted by phone. Alur says he has given disability activists till April-end to provide suggestions.

Vinay Sitapati
Indian Express New Delhi : Wednesday, Apr 28, 2010

Make Wheelchair Event Competetive

Simran Hooja and Faran C.

As Satyaprakash Tiwari manoevered his wheelchair across the finish line of the Mumbai Marathon 2010 on Sunday, he had one regret on his mind. “Why can’t the wheelchair event be a competitive one like in other international marathons?” asked 43-year-old, whose both legs have been amputated. Tiwari was keen on entering his wheelchair for the half marathon but the organisers turned down his request on technical grounds. “To make the wheelchair event a competitive one, we will need professional wheelchairs which we don’t have here. We are not yet at that stage,” said Bruno Goveas, the Mumbai Marathon’s public relations director.

But that hasn’t stopped Tiwari, who has won 13 medals in various international sporting events, from participating in the Mumbai marathon’s wheelchair category for the past six years. ” I want to tell those who are too lazy to run the marathon, that I rose at 4 am and came from Ghatkopar. We all have to be active in such a way to contribute to India’s progress,” said Tiwari, who practises on his wheelchair everyday for 10 km. For others like Nandalal Vishwakarm, 21, the thrill of participating in the event was a high.  “I have been on a wheelchair for the last three years. Today, after ages, I felt rejuvenated,” he said beaming at the finish line.

About 470 people, including aides and companions of those participating on wheelchairs, whizzed between CST and Churchgate and back. Ridhi Gada, a participant, completed the 2.5 km stretch with an aide pushing her wheelchair. “Ridhi always feels sad when she cannot stand up when the national anthem is played in theatres,” said her aide, who didn’t wish to be named. “But participating here every year always gives her something to look forward to.”  And those who helped pushed them along the way were just as excited. For Ajit Sanghvi who learnt to manoeuver 10-year-old Farmino in his brand new wheelchair “It was an honor to be able to participate with him.”

(Inputs from Tasneem Nashrulla)

Hindustan Times. 18/01/2010

London 2012 Launches Programme Celebrating Arts for People With a Disability

‘Unlimited’, the UK’s largest ever disability arts programme – set to transform the disability arts movement in the UK – was launched by London 2012 as part of the London 2012 Cultural Olympiad, and opens for artists’ entries today through www.london2012.com/unlimited.  ‘Unlimited’ is the result of a three year consultation process across the disability, arts and disability sports sectors. ‘Unlimited’ provides the disability arts and cultural sector with an unparalleled opportunity to develop new work for the world stage.   The total project fund of £3 million, provided principally by the Olympic Lottery Distributor, using National Lottery funds, with additional funding and delivery by Arts Council England, the British Council, the Scottish Arts Council, Arts Council of Wales, Arts Council of Northern Ireland and London 2012, will:

• Enable talented deaf artists and artists with a disability to create exciting, quality new work across all disciplines leading up to and including the Olympic and Paralympic Games with awards of £25-50,000 as part of Unlimited Commissions.
• Unlimited Presents’ will bring new audiences to disability arts through major pieces of new work showcased at arts festivals, venues and London 2012 events, building up to and including the Games.
• Provide resources and training to foster young talent and develop skills across the sector through ‘Unlimited Talent’, forging new partnerships between disability and mainstream arts organizations.
• ‘Unlimited International’ will support collaboration between the artists in the UK and other countries, showcase new work around the world, and promote a global debate amongst young people about disability rights.
• ‘Unlimited’ will leave a lasting legacy of high quality new work, increased confidence and momentum in the sector.

The £3 million fund is split into two sections, half in a commissioning fund of £1.5 milion for new work which is believed to be the largest single investment in creative work by artists with a disability. The second half of the programme will provide support to artists to develop their talent and skills and present their work to audiences in the UK and abroad. Janet Paraskeva, Chair of the Olympic Lottery Distributor, said: “London 2012 can bring opportunities to all of us and that is why the Olympic Lottery Distributor is investing National Lottery funds in deaf artists and artists with a disability to enable them to work with mainstream organizations to bring their work to new audiences. The level of funding from The Olympic Lottery Distributor and all the contributing partners represents our commitment to the development of the disabled arts sector whose work can be a powerful catalyst for change in perception and understanding.” Jenny Sealey, MBE, Artistic Director, Graeae Theatre Company and Artistic Advisor for Unlimited said: “The disability arts community has been on tenterhooks waiting for Unlimited to be unleashed. Disability arts and culture demonstrates artistic excellence crosses all boundaries and is a powerful agent for change.  It enables disabled people to strive for artistic expression, champion their own destiny and combat prejudice. Unlimited is an opportunity like no other for an extraordinary programme of art, performance and spectacle – a chance to speak to the world about the quality of what we do.

I hope the future after ‘Unlimited’ will be one of new audiences, new artistic partnerships and collaborations across the creative industry with talented disabled artists rightly given equal status and profile.”  ‘Unlimited’ will encourage collaborations and partnerships between disability arts organizations, deaf artists and artists with a disability, producers, and mainstream organizations to celebrate the inspiration of the Olympic and Paralympic Games, and produce work like never before.  Applications for the Commission strand are welcomed from deaf artists and artists with a disability or disability arts groups wishing to create excellent work either on their own or in partnership with other artists or groups with or without a disability. Further information on the application process can be found at www.london2012.com/unlimited.  Sir Philip Craven, President of the International Paralympic Committee said: “The ‘Unlimited’ programme will without doubt contribute to the expansion of the Paralympic audience over the next three years in the United Kingdom with its theme of celebrating arts, culture and sport by people with a disability. The programme will create awareness in the community that will certainly yield more opportunities for future artists and athletes who will be inspired by the upcoming and much anticipated London 2012 Paralympic Games.”

Mayor of London Boris Johnson said: “London is leading the way on disability arts, highlighted by the Liberty festival and companies like Graeae and Candoco. So give a cheer for ‘Unlimited’, an unprecedented showcase of artists with a disability and opportunity to discover new talent. I want the 2012 Games to be the most accessible ever and deaf and people with a disability – whether athletes, artists, or spectators – are central to making that happen.”

For further information, please see the official website of London 2012 at www.london2012.com.

Student trip to India shows inequality of caste system

September 24th, 2009

This past summer, senior Hannah Siebold, sophomore Ren Ostry, Matt Portman ’09 and I traveled to Mumbai, India, for a three-week anthropological field course led by Denise Nuttall, assistant professor of anthropology. With Nuttall by our side, we threw ourselves full throttle into the unknown, hybrid culture of India.  The experience was overwhelming, yet life-changing, as we witnessed and were deeply affected by the visible and disheartening conditions that low caste (Dalit) peoples endure. We were immersed in the daily life and cultures of Mumbai: a land of spices, layers of sound, seemingly chaotic traffic, potent smells, enchanting music, intense spirituality and profoundly philosophical people. It’s a land where modernity and tradition overlap and create a contradictory society, where one is forced to look within and acutely at the world around them. It’s a land where one cannot afford to be careless while walking through streets at the risk of encountering wild dogs, auto-rickshaws and flying debris from construction; where one works day, night and straight through monsoon conditions; and where one learns the significance of acceptance and faith.

This field course gave us the opportunity to live the life of our professor — an anthropologist, ethnomusicologist, Tabla (Indian percussion) performer and scholar. We participated in the world of classical music, visited museums and temples, met Bollywood filmmakers and revered holy men — like our good friend Babaji — and completed a week of service work at the non-governmental organization, Abled Disabled All People Together.  Through volunteering at ADAPT, I realized that there are significant social inequalities and educational injustices existing in India. Particularly, the barriers in the education system facing children with disabilities are immense. These children are invisible to the Indian government, as authorities neglect to enforce handicap-accessible building features and curriculums appropriate for disabled students. For this reason, Mithu Alur and her daughter Malini founded ADAPT and are now at the forefront of the human rights struggle for children and the able-disabled.

Upon entering one of ADAPT’s seven schools, I noticed a poster on the wall that read, “A small body of determined spirits, fired by an unquenchable faith in their mission can alter history.” These words, spoken by Mahatma Ghandi, ring true in describing the people and the mission of ADAPT, which promotes the idea of inclusive education for all.  There is no discrimination of students or faculty based on ethnicity, class, caste or religious divisions. The organization’s main goal is to educate low-caste children, both able and disabled, eventually integrating them into India’s public school system. Students receive an education based on the national curriculum, physical therapy sessions, yoga classes and prevocational training. In this accepting learning environment, all children get the chance to learn together — a chance they would otherwise be denied.

As a part of our field school, Siebold and I devoted a week to volunteering at Narika Shakti, a self-sustaining, craft-based training program at ADAPT. Shakti empowers mothers of students through teaching skills they can eventually teach to their own children. ADAPT provides a place where they feel safe and comfortable, which helps them to build relationships within a productive community. For as many benefits as mothers reap from this program, consumers too have much to gain. Siebold and I will be selling Shakti’s craft products this semester at Ithaca College to raise money for Shakti and the seven ADAPT schools. The authentic and beautifully crafted handbags, journals, stationary and other crafts made by mothers at Shakti will be on sale soon outside of Emerson Suites. We look forward to working with the college community to spread awareness and raise funds for this deserving organization.

Megan Kelly is a sophomore anthropology major.
E-mail her at mkelly5@ithaca.edu
The Ithacan Online.