Dawson, 50, who has trained in dance, mime and theatre in London and Paris, as also in the US, has ventured off the beaten path of commercial theatre to sensitise others to the subtle differences of being abled and disabled and has presented over 20 case studies on stage – poignant representations of patients afflicted with cerebral palsy in the last five years. ‘I use my body as a channel to show people, to make them understand what it’s like to have cerebral palsy and other such diseases and what they go through. Hopefully, people will have a better understanding,’ Dawson explained. 

According to Dawson, being abled or disabled depends on ‘how you function in the world’. ‘We could probably have a debate on the topic. Since they don’t do things that appear to be normal they are labelled as being disabled. Some people with disability function very well, play the piano with their feet because they can’t with their hands. That doesn’t make them disabled, it means they can play the piano and I can’t.

‘We are all disabled and abled in certain ways. There is a very subtle difference,’ Dawson added. Dawson’s initial purpose was to ‘express ideas in theatre without language’. Learning the Feldenkrais method – a somatic educational system designed by Israeli physicist Moshe Feldenkrais that aims to reduce pain or limitations in movement, to improve physical function by increasing students’ awareness of themselves – got him thinking about the differentially abled.

‘Feldenkrais has nothing to do with theatre, but it helps to keep your body in good shape, which is needed in theatre. While thinking about the awareness of your own body through Feldenkrais, you start thinking about people who have disabilities or actual conditions and that’s how I met neurologist Jonathan Cole and we thought it would be interesting to look at the patients from an artist’s point of view,’ said Dawson who has performed in the US, Canada and various European countries.

For the last five years, he has been painstakingly putting together acts incorporating mime movements, hand model techniques and theatre performances after extensive interaction with the patients. ‘Hand model performance uses detailed movements of hands and arms, but I am not just using my hands but all of me through mime and theatre too. It’s like a cross between a lecture and a drama. I talk to you, show you a little film, perform a little something, but all of it represents being half of what we are,’ Dawson said.

His performances, aided by pre-recorded voiceovers from the patients, paint an intricate picture of how they go about their day-to-day activities. ‘I interact with them. Just talk a lot. Observe a lot – how they do regular stuff, eat and drink and then put together that on stage, being very careful that it doesn’t end up being a mockery. I make sure they get to see what I have put together in the final stage act,’ Dawson explained.

From mainstream theatre to ‘making a difference’ for the patients, Dawson feels it helps him to know himself better. ‘I do it because I don’t really understand myself. It is a realisation of the self, of how extraordinary it is to be anything at all, how extraordinary is it to walk and talk,’ Dawson elaborated on his second visit to India for a performance at a programme to create awareness on mental ability, an initiative of The Wellcome Trust/DBT India Alliance.

Another thing he finds extraordinary is the special relationship Indians have with spaces and their surroundings. ‘People squat on the floor here. They sleep on it, whereas in the West this doesn’t exist. Indians are very aware of spaces like walls and floors and aware of their own movements. It’s fascinating,’ said Dawson who also trained in Indian classical dance form as a teenager.

Source: IANS

 To properly understand the scenario and the trial and tribulations of PwDs we decided to talk to two experts from the field – Dr Satendra Singh and Abha Khetarpal. Dr Singh, is Coordinator of the Enabling Unit (for students with disabilities), Equal Opportunity Cell at the University College of Medical Sciences and GTB Hospital, Delhi. He is also the founder of ‘Infinite Ability’ – a special interest group on disability. Ms Khetarpal is the President of Cross the Hurdles, an NGO, looking after needs of people with disabilities. Excerpts from the interview: 

 Q: How ‘inclusive and accessible to all’ is our society? What are the major problems faced by the disabled community?

Ms Khetarpal: The major problems faced by the persons with disability are barriers of all kinds like architectural, environmental and attitudinal. They have to confront entrapment of neglect, isolation and poverty. They cannot study, get employed and build relationships. Accessibility is all about providing space to an individual and opportunities for personal growth but unfortunately in our country and in our culture people with disabilities are not given a chance to enjoy their own space.

Dr Singh: Persons with disabilities (PwD) are not only 15% of the world’s population but also ‘the world’s largest minority.’ For us, the lack of access to essential services remains a source of discrimination and lost opportunities. Barriers exist everywhere in the form of physical, attitudinal/societal or/and inaccess to information technologies .

Q: The new draft of the People with Disabilities Act has gone for some major overhauls. This includes the most inclusive definition of disability which has been broadened to include people suffering from blood disorders (thalassemia and haemophilia) and those with learning disabilities or other mental disorders (autism, dyslexia). Do you think this will help the concerned?

Ms Khetarpal: Having things on papers is very easy but we need to see practical implementation too. It’s good the definition of disability has been widened. The wider the definition of disability the narrower would be the gap between people with disabilities and non-disabled population. Moreover if more people fall in this category there can larger allocation of budget with more social security measures and greater stress could be laid on policy formulation for this sector. If the draft is accepted and passed, it can be of help to the many concerned but still we would have to a long way to create the needed infrastructure.  

Dr Singh: Only visible disability is not disability. The Rights of Persons with Disabilities Bill, 2011 includes 20 disabilities in its list which also include autism, cerebral palsy, chronic neurological condition, dwarfism, haemophilia, intellectual disability, leprosy cured, low vision, muscular dystrophy, specific learning disabilities, multiple sclerosis and thalassemia. These additions are a welcome move.

Q: Usually, there’s a huge discrepancy between what’s drafted and the ground realities. What is the major problem here? How can things be improved?

Ms Khetarpal:  I call this phenomenon, pseudo-idealism where there is huge gap between the tall claims of welfare agencies and real steps taken either by an individual or by whole system.  The major problem here according to me is the lack of commitment to the cause. The lack of involvement of people with disabilities in the system is a clear indication of alienation. It follows that the people with disabilities, from whatever background, need to be organized and represented from within. Pro-active representation is a key step in the process of recognition and investment. Improving the participation of the people with disabilities is more than simply improving access, making people more mobile, informing people and encouraging them.

Dr Singh: I think there needs to be a change in attitude in PwDs and the non-disabled. Things will not ever be given to you on a golden platter. PwDs need raise their voice. Sitting in a wheelchair doesn’t mean you can’t be heard.The non-disabled on the other hand need to realise the problems faced by others. We need to sensitise people, right from schools.

 Q: Would you say things have improved in the recent past? Is their increased awareness about the problems faced by the disabled?

Ms Khetarpal: Yes. Things have been improving – at a snail’s pace though! There is increased awareness and I guess we can thank the media and communication services for that. They’ve proved to be of considerable value. They help raise awareness about disability issues and also increase opportunities for gainful employment. It also allows people to find out about the services available, make contacts with promotional groups, etc. Whether as news items or as infotainment, e-communication has played an increasingly important role in reducing isolation, sharing stories and integrating and empowering PwDs.

Dr Singh: In my opinion it will take time. Things will change if there is inclusion in education. It’s a long process but change will start only from the grassroots.

Q: Much has been made about including children with disabilities in mainstream schools. What is your opinion of that move? Will it help increase sensitivity among younger people?

Ms Khetarpal: If children with disabilities are given opportunities to attend to the mainstream schools, it could do wonders. It would boost their confidence, make them feel one with the society and would certainly help in augmenting the sensitivity among the younger generation. However, the actual scenario is quite different. Schools, even in the capital, still remain hesitant to do so. At some schools, the authorities are still condescending, asking children to attend classes in a ‘special wing’ designed for children with disabilities. They seem to believe that students with disabilities will not be able to fulfil the academic expectation of the institution. Sadly, all such moves ultimately lead to exclusion.

Dr Singh: Personally, I appreciate this move. No two individuals under the sun are similar, we all are different. It should sensitise children to others with disabilities.

And finally here are ten things Dr Singh would love to see in his lifetime:  

• Educational institutions those are accessible to all.
• A disability policy in each and every state and union territory.
• Higher education institutes with ‘Enabling Units’ for PwDs.
• A syllabus that includes disability studies so others can be sensitised.
• Seats in the Parliament reserved for PwDs.
• Removal of professional discrimination against PwDs.
• SC/ST and OBC-like benefits given to PwDs.
• More income tax rebate for PwDs because they have higher expenditure.
• The disability certificate should be merged with the UID.
• Subsidies on assisted devices

 Author’s Note: We are the world’s largest democracy and the constitution entails the same rights to everyone, irrespective of gender, religion, caste and physical or mental ability. It’s sad that that there wasn’t any act for PwDs before 1995. The 2009 amendment is a step in the right direction, grouping various other diseases and conditions under the disabilities’ bracket.  

For more information and help you can check out these organisations:

• Office of Chief Commissioner of People with Disabilities: This Government of India site contains a mine of useful information including how to apply for a disability certificate, how to register a complaint and a detailed list of the Rights of PwDs.
• Cross the Hurdles:  A rights –based organisation working for PwDs. They offer free online counselling services and also career and education guidance to lead an independent life. Their success stories are also very inspiring.
• Infinite Ability:  A special interest group on disability within Medical Humanities Group of Medical Education Unit. The group looks to promote  and coordinate among Medical Persons with Disablitlies (MPwD) by utilising a Medical Humanitarian approach.
• Family of disabled: Family of Disabled (FOD) is a registered not-for-profit organisation serving persons with disabilities since 1992.
• AccessAbility: An Architectural Access and Universal Design Consultancy that provides design solutions to include persons with disabilities as clients and employees.

Alone we can do so little; together we can do so much. – Helen Keller 

The second is called the “Greville Chester” artificial toe from before 600 B.C. It was made of cartonnage — a sort of papier mache mixture made using linen, glue and plaster. Both display significant signs of wear, and their design also suggest they may have been more than cosmetic additions. ”There are many instances of the ancient Egyptians creating false body parts for burial but the wear plus their design both suggest they were used by people to help them to walk,” Finch told the daily.

Finch recruited two volunteers who were both missing their right big toe. Design replicas of the ancient toes were made to fit each volunteer along with replica leather ancient Egyptian-style sandals. Each volunteer was asked to walk on a 10-metre walkway bare foot, in their own shoes and wearing the replicas with and without the sandals. Their movement was tracked using 10 cameras and the pressure of their footsteps was measured using a mat. The 10 best walking trials were recorded for each foot, using their normal left foot as the control. Both volunteers were able to walk using these devices although one volunteer performed much better than the other.

When wearing the sandals with the cartonnage replica, one of the volunteers achieved 87 percent of the flexion achieved by their normal left toe. The ability to push off using the prosthetic toe was not as good when the volunteer was not wearing the sandals. The second volunteer was still able to produce between 60-63 percent flexion wearing the replicas with or without the sandals. Describing the performance of the three-part wooden and leather toe, both volunteers found it to be extremely comfortable, scoring it highly. One volunteer commented that with time he could get used to walking in it. The findings from this study, which have been published in full in the Journal of Prosthetics and Orthotics, means the earliest known prosthetic is now more likely to come from ancient Egypt.

Source: IANS

The first guest was a Sai Prasad Vishwanathan who recalled how he was never treated differently by his parents and encouraged to attend normal schools though this was made difficult by the authorities. He said that the biggest problem people with disabilities face are the lack of adequate infrastructure to move around. He explained how different things were in the USA where his university had provided adequate infrastructure for him to move around with any problems.

To check the facilities available for the disabled the Satyamev Jayate team checked various public locations (bus stops, government offices, etc.) to see how easy it was for disabled people to move around. Sadly at most places it was almost impossible.

The next guest was Krishnakant Mane who prefers to be called KK. He lost sight when he was three but never lost his way. He does everything a normal person does including trekking and is a top-grade software engineer whilst doing research work as well. He explained how technology has helped him and felt people should remember two important things 1) Don’t think you’re disabled 2) Stop expecting the world is there for you; it’ll be cruel and kind to you in equal measure. He said it’s wrong to blame the government and society had a role to play in allaying the problems of the disabled. 

The show then went on to highlight how hard it is for people with disabilities to get admissions in regular schools. One principal in the audience blamed it on other parents who refused to let their ‘normal’ children mix with children with disabilities.

The show then pondered if it indeed was a challenge to admit disabled children in regular schools. Amar Jyoti School in New Delhi showed it wasn’t and that only some changes need to be made to provide an environment where everyone can be given an equal education.

There is a general consensus among people that disabled people are being ‘punished’ for their sins from a past life. Aamir pointed out the very successful polio eradication campaign  and lauded the country’s effort in eradicating the disease, pointing out that past sins had nothing to do with disabilities.  

Then the show focussed on various people who’ve fought their disabilities and what can be done to improve their lives.

One example was a young girl called Nisha who suffered from a rare genetic disorder called Lamellar ichthyosis that affects 1 in 6 lakh people. In this condition the skin fails to grow alongwith the body which results in a host of problems. Ketan Kothari of Sight Savers said people needed to change their stereotypical attitude about people with disabilities. He said the term ‘differently abled’ was insulting and there was nothing wrong with calling someone disabled.

Javed Abidi, the director of the National Centre for Promotion of Employment for Disabled People (NCPEDP) in India, and the founder of the Disability Rights Group said there were 6 crore disabled people in the country though the government refuses to acknowledge that the numbers are that high. Till 2001, none of the censuses even accounted for disabled people and though the 2001 did take note none of the measures had been implemented. He added that it was  fundamental right that was being snatched away and it was a paramount importance in a democracy that everyone should be treated equally. The policies and tax structure pertaining to disabilities needed to reworked as he pointed out it used to cheaper to bring back gold from a foreign country rather than a wheelchair which had a customs duty of around 30-40%. He said the only way to ensure disabled children were included in regular schools was for the University Grants Commision (UGC) to give a notice to all schools and universities to include disabled children in their courses or become unrecognized by the UGC. 

He also pointed out the bad employment scenario for disabled people with only 0.4% of them employed in private companies and 0.5% employed by public sector ones. It was simply foolish he added to keep disabled people grounded and not let them contribute to the country’s economy.

Dr Rajendra  Joher of the Family of Disabled also highlighted the work he was doing to empower the disabled.  Incidentally Dr Joher was deemed bed-ridden for life but he got past his own disability and is now helping others deal with theirs.

Aamir Khan went on to talk to Captain Kamaljeet Brar whose company Designmate employed over 70% disabled people. It’s an e-learning company that employed over 270 disabled employees and was doing very well highlighting the fact that disabled people can make a major contribution to soceity. 

The last guest on the show was  Joginder Singh Saluja, a disabled bodybuilder and weight lifting champ who started a gym for the disabled because regular gyms denied him entry. The show wrapped up with Aamir asking the audience to write in and support the motion that will force all schools and colleges to become inclusive failing which their UGC status would be revoked.

In the end, Ability Unlimited a group of disabled performers moved everyone with their astounding moves. All in all it was another great episode of Satyamev Jayate focussing on an issue we seldom dwell upon. 

“Segregating children with disability perpetuates stereotyping and lack of understanding of the difference, leading to discrimination in all areas of life,” said the guidelines. Making a mention of the draft Rights of Persons With Disabilities Bill, 2011, the advisory body said the proposed legislation did not take a position on the issue of sending disabled children to special or integrated schools.

The NAC said it concurred with the approach adopted in the bill that it was appropriate to let children and their guardians have a choice on the kind of school they would like to access – inclusive or special. Noting that the Right of Children to Free and Compulsory Education Act extended to all children, including the disabled, the advisory council said norms for schools needed to be revised. ”This would imply that every school would need to be inclusive with teachers trained with basic skills of special teachers,” said the NAC, adding, “If this is not feasible then the maximum distance norms for a disabled child to access an inclusive school would need to be clarified”.

Since the choice of special school was also guaranteed in the Rights of Persons With Disabilities Bill, the RTE needed to indicate norms for special schools and the level at which these would be available to the disabled, said the NAC. For instance, there can be a distance norm or that every district will have special schools, as well as numbers per population in cities and towns, said the NAC. The advisory council said the RTE law will need to indicate the qualification of teachers in special schools and the system of certification. According to NAC estimates based on 2001 figures, there are nearly 22 million disabled people in India.

Source: IANS

According to rough estimates which the department has collected at the moment, the list includes about 1200 physically challenged people who have expressed their desire for a three wheeler. ”There is no last date for this scheme. We have also directed the state Public Works department to see that they make suitable arrangements for the physically challenged to come to government offices without any hazzle,” said Chandy. He said the Centre has a scheme where they provide Rs.10,000 each to the physically challenged to buy a wheel chair. ”I met the Minister for Social Justice and Empowerment Mukul Wasnik and submitted the proposal. We will collect the centre’s contribution and put in the state government’s also. All physically challenged people need just apply for it,” added Chandy.

Source: IANS

The man behind the world’s toughest wheelchair, Tim Swenson, came up with the idea after his son, Jeff, was paralysed in a car accident, the Mail said. The ability to go off-road doesn’t come cheap, though. An Action Trackchair costs $9,000 (5,700 pounds) and is currently sold in the US, Canada, Norway and Australia.

Source: IANS

“I had decided that I would not be at the mercy of others and knew that the only way I could be self-sufficient was with education,” Goyal, working as general assistant manager at the Corporation Bank, Bhikaji Cama Place in south Delhi, told IANS. ”I did my graduation (Bachelor of Arts) and post-graduation in Hindi from Miranda College, Delhi University,” she added. Hailing from Rajasthan, Goyal says the situation could improve further if more employment opportunities were there in both the public and private sectors.

Agreed 22-year-old visually-challenged Varun Mehto, who blamed the lack of will in both the sectors to recognise the inherent talent in many such people. According to the 2001 census, there are around 2.19 crore physically challenged people in the country. ”Reservation is not the answer to everything. The government cannot get away just by reserving seats for us. There has to be a healthy work environment too,” Mehto, the son of a poor school worker in West Bengal who is a computer whiz and aspires to be a software designer, told IANS.

Employed at the National Association for the Blind Centre for Blind Women (NABCBW) as a computer teacher, Mehto said if the private and public sectors installed blind-friendly softwares, thousands like him would get jobs easily. ”Softwares like JAWS (Jobs Access With Speech) and SuperNova, which basically help us in reading from a computer, cost around Rs.50,000 each for installing in five computers. So nobody is willing to spend the money,” said Mehto. However, there is another option. Free softwares like ‘Thunderbird’ and ‘Free Screen Reader’ are also available but then the companies would have to train the visually-challenged for a couple of months to use them. ”But I guess no one wants to take so much of pain,” lamented Mehto.

Debasis Das, store manager of the Costa Coffee outlet in south Delhi’s Green Park started in 2006, begs to differ. He points to Costa’s policy to employ at least one differently-abled person in its outlets. ”Here everyone except the manager is either deaf or mute or both. However, their disability is never an obstruction in their excellent work,” said Das. The differently-abled staff, says Das, is trained for a month in collaboration with the Noida Deaf Society – a training school for hearing-impaired people.

“We take written orders and there is seldom any difficulty in communicating with our customers,” said 23-year-old Shaan, a deaf employee at Costa. However, Javed Abidi of the National Centre for Promotion of Employment for Disabled People (NCPEDP) suggests that the government should give tax incentives to all those private companies which provide services to handicapped people. ”Why can’t the government give tax incentives for this cause? Encourage the private companies to offer disabled-friendly working environments and reward them. It’s simple,” Abidi told IANS.

“There is a marginal improvement in the situation, but I would say that the government has only given reservation without a conducive working environment and the private sector has failed overall,” he added. Taking the point further, Janta Adarsh Andh Vidyalaya (JAAV) principal Kalpana Sharma said the physically handicapped, particularly the blind, need to acquire special skills that would ensure a good job. ”I think computers can be the saviour for them as technology is vital in today’s world. If they can work on computers, they can easily get jobs in call centres,” Sharma told IANS.

“The employment opportunities have definitely expanded over the years and there is a positive change. But this should be a continuous process,” she added. However, George Abraham of SCORE Foundation, an NGO working for the blind, said though jobs have increased for the physically challenged, they are still ‘menial’ in nature.

“Most of the jobs given by the government consist of very little work. They are given as charity or donation,” Abraham told IANS. “You will hardly see such people at the top level. It is good that people are talking about these issues more now. But the sad part is not many companies are taking initiatives. They are adopting a ‘wait and watch’ policy,” he added.

India, which has been polio-free for over a year now, was today taken off the list of polio endemic countries by the World Health Organisation. This announcement was made by health minister Ghulam Nabi Azad at the Polio Summit 2012 in the presence of Prime Minister Manmohan Singh.

Azad received a letter this morning which stated “WHO has taken India’s name off the list of polio endemic countries in view of the remarkable progress that we have made during the past one year.” The only three countries left on the Polio endemic list are Pakistan, Nigeria and Afghanistan.”

According to protocol, India will have to remain polio-free for the next two years to achieve complete polio free status.

The Prime Minister, while extoling the achievement, said the real credit goes to the 23 lakh volunteers who repeatedly vaccinated children even in the most remote areas battling prejudice and ignorance.

He said the success of the effort shows that “team work pays”.

Singh said, “This gives us hope that we can finally eradicate polio not only from India but from the face of the earth.” If polio is completely eradicated it’ll be the third disease to be vanquished after smallpox and rinderpest. Polio was completely eradicated in the Americas by 1991, in Europe by 1998 and in 2011 only 44 cases were reported worldwide, mostly from Pakistan.

This is indeed an amazing turnaround, considering that in 2002, Uttar Pradesh alone accounted for nearly two-thirds of the total worldwide cases. However 2011 was a completely polio free year, with over 17 crore children receiving the vaccine last Sunday. 

Picture Source: WHO/ Global Polio Eradication Initiative 

With India marking its first year without polio cases, the health ministry has called upon the nation to ensure regular polio vaccinations of children to achieve the milestone of making India polio-free.

Talking to reporters after announcing a two-day summit on polio, Health Ministry Additional Secretary Anuradha Gupta said the summit will focus on future strategy formulation for the fight against polio.

“We need to ensure that the momentum for immunisation is maintained,” Gupta said.

She highlighted that each round of polio vaccination involves administering drops to over 17 crore children. 

Calling it a “proud moment”, former Rotary International president Rajendra K. Saboo recalled how the announcement of India being polio free at a recent international conference of Rotary received a standing ovation.

“The world map was shown during the presentation, where polio endemic regions were marked with red dot… seeing that red dot missing from India for the first time, every Indian had tears in their eyes, and the world Rotary leaders gave a standing ovation,” Saboo said.

Rotary International has been one of the leading partners of polio eradication initiatives world over. 

Trustee of International PolioPlus committee of Rotary Ashok Mahajan meanwhile said the efforts of involving religious leaders in the campaign helped a great deal.

India’s last polio case was reported on January 13, 2011 from West Bengal. The country reported 42 polio cases in 2010 and 741 in 2009.

In 1995, India reported 50,000 polio cases. 

Source: IANS