Throwing out workers with visual disabilities enmasse may be a bad precedent!

Dear Friends,

Cases like this are surely a discouragement to the voluntary initiative of private sector and are in bad taste-  both for employers and employees with disabilities.

Its difficult to prove how it all started and whether it was due to conflict between Management and Union or really due to no work being done by workers. One thing is clear, if the workers have been working for five years, they can't be shunted out in this fashion.

The management on the other hand should seek the active involvement of disabled employees in providing reasonable accommdoation. I also see a larger role here of NGOs that work in employment areas to diffuse the crises to set good precedent!

regards

Subhash C Vashishth

Click here to read from source:   Suspended visually-challenged workers say firm’s move against law

-Nisha Nambiar

Pune: Approach disability commissioner; company says they were doing no work but will get pay till probe ends.

Twenty visually-challenged workers, who were suspended by a private firm in Chinchwad, have approached the Disability Commissioner complaining about violation of their rights under the Equal Opportunity Act 1995, which says disabled persons cannot be suspended.

Uma Precision Pvt Ltd had issued the suspension orders on Monday. The workers submitted their representation to the Commissioner on Tuesday. The matter will be heard on Friday.

Advocate Vaishali Sarin said that the employees have been working with Uma Precision since the last five to six years and the company cannot suspend them. “It is against the law,” she said. Sarin along with these workers will hold a sit-in protest at the company’s gates on Wednesday morning.

The firm has been into auto ancillary products for 30 years and has nearly 500 employees. It had employed the workers in its punching unit. They had been working since 2005. The workers, who are part of the MNS’s Maharashtra Navnirman Kamgar Union, had clashed with the firm’s officials earlier too.

The company officials said the workers were suspended and a probe was being conducted. Director of the firm’s Human Resources department Dilip Tilekar said the employees were not doing any work and were suspended for gross misconduct. “A committee would conduct the probe. There would be a hearing in the coming week. They would be given a chance for their say,” he said. However, these employees will continue to get their pay till the probe is completed and hearing of the case is conducted, he added.

Sarin, however, maintained that workers had been doing good work and many of them are the sole breadwinners of their families. “I am the sole breadwinner of the family. It would be very difficult to find another job soon,” said one of the suspended workers. Trainer Sunil Chordia alleged that the workers were not given adequate work and the company cannot complain about them sitting idle.

Leprosy cured/affected still begging for want of rehabilitation measures & non-acceptance of society

Give leprosy-affected a chance: Times of India


IANS, 31 January 2010, 03:05pm IST

"Maataji, Babuji, namastey, namastey!", he greets people brightly at the traffic light, a smile lighting up his creased face. Kondasamy is one 31st Jan, World Leprosy Day (Getty Images) among the hundred leprosy patients in Delhi.

If Kondasamy, in his 30s, has ever been pained by noticing people shrink away when he puts out his disfigured hand for alms, then he has chosen to hide it behind his ever cheerful veneer.

"Tum ko uparwala banaye rakhe (may the almighty bless you)," he says in humble thanksgiving to anyone who gingerly drops a coin into the aluminium can - taking great care to ensure they do not touch the utensil - dangling from his wrist.

Kondasamy, who belongs to Bangalore, says he is cured of the disease. "I am cured. I was cured 15 years ago," he says cheerfully.

Kondasamy begs for a living to feed his family - his wife, also a cured leprosy patient, and his two-year-old daughter, who does not have the disease. He stays at a Kusht Ashram (leprosy home) in south Delhi run by the government, where there are many others like him.

"Yes, we have doctors coming to check us and I take medicines," he says. His wife stays at home to look after the child. Like Kondasamy, some of the other inmates of the ashram go out to beg.

In India, the recorded cases of leprosy have fallen from 57.6 per 1,000 people in 1980-81 to less than one per 10,000 in December 2005, which is considered the level of elimination by the health ministry as short of total eradication.

One can spot leprosy patients outside major temples in the capital, including the Hanuman temple in Connaught Place and the Sai Baba temple in south Delhi's Lodhi Colony. They sit on wheelchairs, with their belongings - all stuffed into plastic packets hanging from the chair. The wheelchair is their home - come winter, summer or rain. For protection against inclement weather, they have a thick plastic sheet to cover themselves.

And on days when there is sufficient water, like when a pipe nearby has sprung a leak, one can see them squatting near the water source, soaping themselves and enjoying a bath, by the roadside.

Food is not a problem for them if they are positioned outside affluent temples. They often get to savour platterfuls of puri, halwa, aloo subzi - all distributed by the devout on special auspicious days - notably Tuesdays and Saturdays. On other days, they get enough alms to buy food.

Leprosy (also known as Hansen's disease) is caused by a bacillus, Mycobacterium leprae. According to the World Health Organisation, the bacillus multiplies very slowly and the incubation period of the disease is about five years. Symptoms can take as long as 20 years to appear. Leprosy is not highly infectious. It is transmitted via droplets, from the nose and mouth, during close and frequent contacts with untreated cases.

According to the International Federation of Anti-Leprosy Associations (ILEP), a federation of 15 non-governmental anti-leprosy organisations, based in London, India currently has about 64 percent of all the new leprosy cases in the world, followed by Brazil with about 17 percent, then Indonesia with about 7 percent. Other countries reporting more than 1,000 new cases in 2006 include: Angola, Bangladesh, China, The Democratic Republic of Congo, Madagascar, Myanmar, Nepal, Nigeria, The Philippines, Sri Lanka and Tanzania.

A cure for leprosy was identified in the form of Multi Drug Therapy (MDT) that came into wide use from 1982 following recommendations of WHO.

ILEP says: "Many of those cured of the disease will have to live with the consequences of leprosy. It is estimated that probably at least 3 million people are living with some permanent disability due to leprosy, although the exact figure is unknown."

In the national capital, MESH (Maximising Employment to Serve the Handicapped), an NGO working with 40 groups of disabled and leprosy affected people for their rehabilitation, trains them in different craft skills.

The leprosy affected or their children are trained in weaving, designing, woodcraft and toy-making. The end products - elegant bedspreads, table linen, cloth bags, stuffed toys and cards are sold at their outlet in Delhi and Hyderabad.

MESH held an exhibition and sale of handicrafts made by leprosy affected people at their south Delhi outlet Saturday, and also screened a documentary "Towards Dawn".

Now some "Action Plan" to set things right at Asha Kiran

Dear Friends,

This is subsequent to my earlier posts on continued deaths of inmates at Asha Kiran - A Govt. Run home for Intellectually challenged persons. Now after several deaths in a row and mass agitation by Civil Society, finally Delhi Government seems to have woken up to the mess that has been created at the Govt. run home for the Intellectually Challenged persons. This indicates that persons with disabilities with no family support are not the priority of the Government. 

I have three major objections to this process:

(a)  It is surprising to know that no civil society organisations/stakeholders were invited to the meeting.
(b)  Secondly appointing contractual employees in these centres will not improve the conditions unless they are given decent wages.
(c) Thirdly though the Delhi Govt has admitted lapses on the part of authorities, there is no criminal action on the persons responsible indicating how Delhi Govt. values lives of persons with disabilities!
(d) The whole process of managing the action plan seems to be medically oriented with Doctors treating the patients! There is no rehabilitation professional involvement nor is any thing being discussed to ensure their social political rights, Right to education for children under 18 years, vocational training etc.

I wonder whether the thought process in the political class has undergone any change in light of  India proudly signing UNCRPD ! There is no doubt that  involving civil society, National Trust and Rehabilitation Professionals will give more credibility to the Government's action plan and the Government should seriously consider this for in absence of this and given the past expereince, we might see the condition of these homes "back to Square one"!

Here is the coverage from Zee News and Times of India on the subject.

regards
SC Vashishth, Advocate


Delhi Govt. Brings Action Plan : Zee News

New Delhi: Under attack for a spate of deaths at an observation home run by it for the mentally challenged, Delhi Government on Wednesday came out with a time-bound action plan to ensure proper care and medical facilities for the inmates.


As per the action plan, some of the over 700 inmates at the Asha Kiran Home would be transferred to three buildings within next two months to decongest the existing home so that each mentally challenged child get proper care and attention.

The Government also decided to deploy well-equipped ambulances and upgrade other infrastructure at the home which witnessed 26 deaths in the last five months. Two inmates had died last week while one breathed his last on Monday.

The action plan was finalised at a high-level meeting, chaired by Chief Minister Sheila Dikshit and attended by Finance Minister A K Walia, Social Welfare Minister Mangat Ram Singhal, Health Minister Kiran Walia and Chief Secretary Rakesh Mehta, besides several top officials.

The meeting decided to initiate a series of short-term and long-term measures to overcome existing deficiencies at the home. The home is being maintained by the Social Welfare department.

Yesterday, Dikshit had admitted lapses on the part of authorities and said over 700 inmates were staying at the home against the sanctioned strength of 300.

In the meeting, it was also decided to appoint more attendants on contract basis to ensure proper care of the children.

"To overcome the situation of over-crowding in the Home, it was decided to shift inmates to three other existing buildings, which are being upgraded," an official said.

He said an expert team of the doctors will guide the authorities to shift the inmates. The meeting also decided to appoint separate administrators for the new homes.

Further, a special ward at Ambedkar Hospital is being readied to provide treatment to those inmates who may require hospitalisation, the official said.

Dikshit also instructed the health department to deploy three well-equipped ambulances for the inmates. Apart from this, mental health experts will be visiting the Home on regular interval for check-up of the inmates.

The Chief Minister also instructed authorities to conduct review of all existing homes so that no such incident takes place in future.

Walia and Singhal had visited the home on Monday and suggested a series of measures, including upgrading the shelter to a mini-hospital.
PTI



Finally, Asha Kiran inmates to be shifted : Times of India


TNN, Feb 18, 2010, 12.46am IST
NEW DELHI: After years of neglect and many deaths, the government has finally spelt out relief for inmates of the Asha Kiran home for the mentally challenged in Rohini. What was being proposed for over a decade is now being promised by chief minister Sheila Dikshit who has set a deadline to decongest the overcrowded home by shifting its inmates to three other buildings. One building in Bindapur and two others in rural areas are being upgraded for the purpose. The home as of now has space for 350 but it houses over 700 inmates.


Shifting will be undertaken on the basis of the gravity of the inmates' mental retardation.

The segregation will also be need-based. An expert team of doctors will guide the segregation process. There will be a separate administrator for the three buildings who will be fully responsible for the running of the home and will be accountable for all actions, CM Sheila Dikshit made it clear at a high level meeting on Wednesday.

Further, a special ward at Dr Ambedkar Hospital is being prepared to provide treatment to those inmates who may need hospitalization. The chief minister expressed confidence that there will be a positive change at Asha Kiran within two months.

The meeting, chaired by the CM, was attended by Finance Minister Dr AK Walia, Social Welfare Minister Mangat Ram Singhal, Health Minister Kiran Walia, Chief Secretary Rakesh Mehta, Principal Secretary (Finance) JP Singh, Secretary (Social Welfare) Manoj Parida, Director (IHBAS) and other senior officers of concerned departments.

Dikshit instructed officials to conduct a review of all existing homes so that no untoward incident takes place in future. To cope with the extreme shortage of staff, it was decided to employ attendants on a contractual basis.

Dikshit also said three well-equipped ambulances will be deployed at the home. The ambulances will act like mobile hospitals. Experts from Institute of Human Behaviour and Allied Sciences will visit Asha Kiran regularly.

Deaths at Asha Kiran- isn't this a criminal negligence on part of State?

Dear Friends,

Please refer to my earlier post on the subject.

"Poor maintenance or lack of basic amenities could be contributing factors, however prima facie all the deaths seems to be natural" ! The statement doesn't inspire confidence.

It is evident that the deaths occurred due to lack of facilities which is equally criminal negligence of duty when compared to inflicting a fatal blow on some hapless person entirely in your custody with no chance to escape! Are you really serious about the human rights of those whom you put in institutions and forget?

Can the Government of Delhi own up the negligence on its part and fix the responsibilities of lapse and and provide for appropriate systems at the earliest?

The human rights record is so poor when it comes to disabled people here. And the Govt. is answerable to the nation and international community soon with the State Progress report on actions taken by Govt. in light of UN Convention on the Rights of Persons with Disabilites" falling due in May 2010.

DCPCR must act and ensure that those at fault are booked in terms of law and immediate preventive action are taken to restore dignity of life and basic services in the state run home by Delhi Govt.

Read from Source: Deaths in juvenile home natural: Delhi govt

Around 75 inmates died between 2004 and 2008 at the complex

Published on 01/14/2010 - 10:17:24 AM

New Delhi: The deaths of 12 inmates of a state-run juvenile home in one month were natural, the Delhi government said Wednesday in its reply to a National Human Rights Commission (NHRC) notice. According to investigating officials, poor maintenance or lack of basic amenities could be contributing factors.

According to investigating officials, poor maintenance or lack of basic amenities could be contributing factors.

The NHRC Tuesday issued a notice to Delhi Chief Secretary Rakesh Mehta asking for a detailed report into the cause of deaths of members of Asha Kiran Home and the state of affairs at the juvenile home, in north west Delhi's Rohini area.

"The Delhi government has filed a reply to NHRC. Of the 12 inmates who died, one was under 18 years. Prima facie the cause of death appears to be natural. However, based on that we won't close investigations. In previous reports, the home was found to lack basic requirement and had poor sanitation levels. We are going to see if the deaths had anything to do with that," a senior official of the Delhi Commission for Protection of Child Rights (DCPCR) told IANS.

The NHRC was acting on a complaint filed by human rights activist Prabir Kumar Das who alleged that 12 mentally challenged inmates of the home had died in one month.

Media reports suggested that three of the 12 had died within 24 hours due to lack of basic facilities such as warm clothes.

An earlier report by the child right's panel in June last year had found that although sanctioned for 250 inmates, the only state-run complex for mentally challenged people in the national capital houses 750 mentally retarded men, women and children.

The children were found to be suffering from tuberculosis, seizures and skin diseases. The home lacked hygiene and proper sanitary conditions. Around 75 inmates died between 2004 and 2008 at the complex.

In many of these cases, the cause of death was epileptic seizures, which the DCPCR probe committee said could be owing to neglect of medical authorities.

The detailed report from the chief secretary sought by NHRC is due within four weeks time.

Asha Kiran- a state run hope for disabled reports 12 deaths in December alone!

Dear Friends,

Nothing is well at Asha Kiran. With the capacity of 350, you stuff 730 inmates, isn't this a violation of basic human rights of those who can't take care of themselves due to their disabling conditions that they live with?

Also are we providing sufficient support to the numbers housed there with one carer looking after 40 persons? Is it humanely possible for one person to care 40 inmates with varying degree of disability and associated medical condition like epilepsy, tuberculosis- forget about fever, cold, smaller injuries! This is gross violation and you can't expect the carers to work at Rs 3934/- per month and look after 40 people every day.

Perhaps it is the fear of catching infections that even the doctors do not examine them closely and properly! This is just not acceptable. The facilities need to be created /provided strictly as per norms as it is the responsibility of the Govt. Each life is precious !

Hope each one you are perturbed at the conditions that prevail at Asha Kiran in Delhi and several other institutions across length and breadth of India in similar state which never make headlines! If we tolerate it as an accepted norm, perhaps we don't deserve to be called a socialist democratic republic!

Source: For inmates, few rays of hope at Asha Kiran; Express Newsline 11 January 2010

In December, 12 people died at this home for mentally retarded; few caregivers, little care, reveals report by Social Welfare Department

As the green ambulance rolls through the 7-ft gates of Asha Kiran complex, in Awantika, near Rohini, a middle-aged man looks out of the window, trying to capture one last glimpse of the outside world. Within seconds, the gates shut.

In December, 12 deaths were reported here — three of them within 24 hours.

The inquiry report by the Social Welfare Department (a copy of which is with Newsline) under which the centre works, concludes that death is not new for Asha Kiran.  Over the last four years, 128 inmates have died in the home. The complex, built for 350 people, now houses 730.

“The mentally retarded inmates suffer from multiple deficiencies as far as physical health is concerned. Because of this, particularly in respect of severely retarded inmates, life expectancy is relatively low,” reads the report filed by Director, Social Welfare, S A Awardi. According to the report, 60 per cent of inmates are in the “category of severely or profoundly mentally retarded persons.” Many inmates do not even survive a year. There is no segregation of people who have infectious diseases like tuberculosis.

The inmates are taken care of by ‘house aunties’. The staff reveals that each of them sometimes take care of over 40 people. They are paid Rs 3,934 per month for 8-hour daily job — which probably explains why a majority of the caregivers quit within days of joining.

“The inmates feed each other and give each other a bath,” said a sweeper working in the male ward. “There’s too much noise and it is not easy to work.”

The report states: “Many gave up their jobs after serving for a very short period. It is mentioned that providing every care like a mother to mentally retarded persons is really difficult.”

Constant medical care is available. But the staff say the doctors merely prescribe medicines without even closely examining the inmates.

Despite the fact that the walls of the complex are nearly 10-feet tall and the high gates are guarded 24-hours, the officials have even reported cases of children going missing. On December 24, the Social Welfare Department advertised in newspapers about two inmates. One of them, Raju, was 16 years old and 4.8 ft tall. He was admitted on 21 May and has been missing since 16 September. More bizarre was the case of the 7-year-old boy admitted in December 2006. The child was merely 3.6 ft tall.

December deaths

Dec 2: Krishna (16), living here since 2007. Post mortem report awaited

Dec 9: Anu (20), had been staying since 2006. Cause of death tuberculosis and epileptic fit

Dec 12: Ranveer Kumar (48), was admitted at Sanjay Gandhi Memorial Hospital, Mangolpuri, since 16 November following dehydration and swelling in legs

Dec 14: Manjeet (55) was admitted at the Sanjay Gandhi Hospital, suffered from swelling of body

Dec 15: Raj Kumar (42) admitted in Sanjay Gandhi Hospital since 12 December. Had swelling of body, difficulty in breathing

Dec 18: Seeta Gauri (19), living here since 1989. Cause of death cardio-pulmonary arrest

Dec 19: Sandeep, was under treatment since Nov 29 at Sanjay Gandhi Hospital, was referred to LNJP. Cause of death Meningoencephalitis with refractory shock

Dec 25: Soni, living here since in 2007, died due to seizure disorder

Dec 27: Meena Payal (38), living here since 1999, postmortem report awaited

Dec 29: Angoori (19), living here since August 200, was suffering from asthma and TB

Dec 29: Sangeeta (21), had been living here since 1996. Body discovered several hours after death, was a victim of bone tuberculosis

Dec 30: Deepti (12) had been here since March 2009, cause of death epilepsy

Harmonizing Disability Act with UNCRPD

'Disability Act should conform to UN model'
Ashish Sinha
New Delhi, September 8, 2009

Click here to read from source: India Today

On a day Taare Zameen Par won the national award for being the 'best family welfare entertainment film', Prime Minister Manmohan Singh authenticated the need for an attitudinal shift towards persons with disabilities.At a conference of state welfare ministers, Singh said India lagged in adopting the correct - human rights - approach on the subject. He said the Persons with Disabilities (PWD) Act, 1995 would be "comprehensively" amended to conform to the UN Convention on the Rights of Persons with Disabilities (UNCRPD), enforced in May 2008. India is a UNCRPD signatory.

"I found in each one of them (persons with disabilities) a determination to live productive lives and make their individual contributions to society. We should give them every possible opportunity to do so. They need equal opportunities as equal citizens with special needs," he said.The UN convention redefines the old approach of viewing persons with disabilities as "objects" of charity, medical treatment and social protection.

The PWD Act, to a large extent, suffers from the same shortcoming with the state becoming the 'provider' - sometimes the 'facilitator' - for persons with disabilities. Experts said other legislations on the subject also suffer from the old mindset and rather than "comprehensive amendments", a new set of laws was necessary.The UN convention sees people with disabilities as "subjects" with rights, capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

"The PWD Act lists seven disabilities - blindness, low vision, leprosy- cured, hearing impairment, locomotor disability, mental retardation and mental illness. The UN convention doesn't restrict the definition. It talks of higher support need as a matter of right," said Poonam Natarajan, chairperson of the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities.

"A person is not disabled; it is the environment that makes him so. Their legal capacity must be redefined.They should have full control over decision-making and choices," she said. The Prime Minister described persons with disabilities as those having "evolving capacities". After enforcement of the UN convention, the focus shifted to providing equal opportunities to persons with disabilities so that their potential could be harnessed.

"The medico-charity model needs to be dumped. Disability, simply, is diversity. It means the right to live with dignity and equal opportunities. The mindset of the administrative machinery, however, is no different from most of society where stigma is associated with disability," said a senior IAS officer working in the sector.

Last year, the government had announced an incentive scheme to promote employment of persons with disabilities in the private sector. The Prime Minister pointed out the scheme hadn't made much headway. " This may partly have been because of the economic slowdown. But as our economy is now emerging from its slowdown phase, I urge the corporate sector to respond handsomely in the implementation of the scheme," he said.
Courtesy: Mail Today

Another State-level workshop on Disability Evaluation and Certification

Dear Friends,

The Government seem to be taking this exercise in all the corners of India to see that Disability Evaluation and Certification is done as per set norms. However, the process is still tedious for many and as per estimates presented by Union Minister for State of Social Justice & Empowerment, Govt. of India, only 22% persons with disabilities counted in 2001 census have been given the Disability Certificates. One could easily imagine and about the status of remaining 78% when all Govt. schemes, benefits are only given to those who have a valid Disability Certificate!

In this light, the whole process of certification at times seems unending in a gigantic country like India, unless the Government consciously decides to make an earnest effort to issue Smart Card based multi-purpose Disability Certificates to all so that multi-certificates for various reasons could be avoided. I remember when on 25 September 2007, a National Consultation Meeting to simplify the procedure of Issuing Disability Certificate was organised by Svayam in association with Aarth-Astha at New Delhi which had major recommendation that I feel are still to be implemented!

The need of the hour is to take this issue as a national challenge to map all citizens and children with Disabilities and issue them this crucial document within a time bound programme.
regards

Subhash Chandra Vashishth


Click on link below to read from source:
Doctors urged to follow norms while issuing disability certificates

Health official says doctors will have to follow uniform guidelines specified by the Central government to evaluate and certify the cause of disability.

Doctors will have to follow uniform guidelines specified by the Central government to evaluate and certify the cause of disability, said Principal Secretary, Health, V.K.Subburaj.

Addressing medical professionals, who are also members of the various Medical Boards in the district, Mr. Subburaj said doctors have to take the task of issuing disability certificates seriously. Apart from responsibility and commitment, they also had to have a rounded picture of multiple disabilities while issuing the certificates.

He was speaking at the inaugural of a State-level workshop on Disability Evaluation and Certification organised here by the National Institute for Empowerment of Persons with Multiple Disabilities (NIEPMD).

NIEMPD Director Neeradha Chandramohan said currently certification was being done only for uni-disability or a single disability. The training programme was organised to orient doctors on multiple disability certification. A disability of 40 per cent or more was caused by blindness, low vision, hearing impairment, mental retardation, mental illness, locomotor disability, leprosy (cured), Cerebral Palsy and Autism. Multiple disabilities indicate a condition in which the disability is caused by two or more of the above causes, she added.

The objective of the workshop was not only to disseminate information to doctors regarding the guidelines, but also to clarify their doubts regarding the current evaluation process. The issue of simplifying the process was also taken up at the meeting, as the medical boards met only once a week to give certificates. It was mentioned that this was insufficient to cover a substantial portion of the disabled population.

The recommendations from the meeting would be sent to the Government of India through the State government, Dr. Chandramohan added. The workshop was conducted by the NIEPMD with the National Institute for the Orthopaedically Handicapped, Kolkata, and the Ministry of Social Justice and Empowerment.

A petition for mercy dealth for 4 disabled sons brings some support from Ac

Dear Friends,

A very meaningful discussion that happened on this news item "Parents want mercy killing for 4 disabled sons" has finally brought much needed support from the IAMD, thanks to Sanjana Goyal and her friends. I totally agree that there should be a national data base not only of those with muscular dystrophy but all those who are citizens of this country and in particular those with disabilities and in difficult circumstances.

The government may have ample of money and resources, but unless the data base exists its is difficult to plant any intervention and support. Similarly many NGOs and kind hearted citizens want to reach out but it is so difficult to help in absence of systems. Also how many cases can media pick up?

I am happy that on this count Mr. Nandan Nilekani has begun his work on his Unique ID Card Number system which will give identification to each Indian. This would be a boon to those with disabilities as proper mapping, planning will be feasible once this comes through. However this doesn't stop NGOs in the field to continue gathering data on their relevant areas which can further supplement the efforts of the Govt.

Financial help in this case could have brought some relief but ultimate need was to counsel the family, extend a quality of life and arrest the further degeneration as far as possible in the little kids by way of physiotherapy, simple lung exercises like filling air in balloon, blowing candles and the likes. And yes, a balanced diet is of much importance here for the young children.

Appended below is the news followed by comments that followed as part of discussions for the ready reference of readers. Hope the civil society continues its vibrancy this way and reaches out to those in need But somewhere Govt. also needs to be accountable in this process as I don't see even a single response from those who are Govt. offices in Disability Sector like CCPD, MSJE and others who remained passive recipients of the whole discussion.

Regards

SC Vashishth, Advocate -Disability Rights

Clik here To read from source

Parents want mercy killing for 4 disabled sons

IANS 11 August 2009, 01:42 pm IST

LUCKNOW: A farmer and his wife in Uttar Pradesh have sought President Pratibha Patil's permission for the mercy killing of all their four sons whohave turned into virtual vegetables. The four, aged 10 to 16 years, have been afflicted by muscular dystrophy, a genetic disease that has confined them to bed.

"My sons cannot stand on their feet. They are unable to move their body below the neck. I see their distress every day. Now when doctors too have lost hope, I want they should die. Death would be the ultimate solution for their suffering," farmer Jeet Narayan of Bashi village of Mirzapur district, some 300 km from Lucknow, has said in his letter to Patil.

"My sons are in utter discomfort. I cannot see their helplessness any more. So, we have written to the president that our sons be killed through euthanasia," Narayan's wife Prabhavati said over telephone.

Narayan has told his neighbours that he has sold of all his valuables to meet the medical expenses of his sons."Our financial resources have been exhausted. I even sold off the parental land. Moreover, I owe nearly Rs 2 lakh to moneylenders," he said.

Prabhavati said muscular dystrophy afflicted her sons when they were five years old. She identified them as Durgesh, 16, Sarvesh, 14, Brijesh, 11, and Suresh, 10. All four were normal children until then.
The couple now fears their four-year-old daughter may become disabled when she turns five. "Till now our daughter is doing fine but we are quite worried about her. She might meet the same fate like her brothers after a year or so," said Prabhavati.

Comments

Shri Subramani L (lsubramani@deccanherald.co.in)

At least they have a responsibility to explain to them what they are planning to do. I am sure there would be ways of making them live a better life, but if the parents feel defeated then there is little or no choice, unless perhaps someone personally willing to bankroll theirrebah or treatment.

Vamshi G (gvamshiai@gmail.com )

I don't support Euthanisia at any stage. We know many cases wheremore than one child in the family is disabled and still they becomeachievers, for which there is more than one example on our listitself. We have even seen persons with multiple disabilities achievegreat heights of success. So, they should carry on their lives with apositive attitude awaiting for some miracle to happen, which is easiersaid than done.

I personally interpret the factors which would have prompted theparents to take such a decission in a different way. -- consideringthe attitude of the Indian governments towards the disabled persons inour country, the parents would have been frightened about the lives oftheir children in a country like ours.
As far as the president's decission is concerned, I feel she shouldthrow the decission about Euthanasia out of the window and think inlines of what the government should do for a family like this,assuring good medical facilities, education and financial assistancefor any productive purpose the family undertakes for it's survival.The steps taken should be in such a manner that no disabled person inIndia should ever even think in lines of Euthanasia again.
I know most of you would burst into laughter reading my suggestions asto what our caring and concerned governments should do for thisfamily. They are so busy taking care of the members who support themto sustain power till the nest elections.
To quote a small example, the H R A of the members of Andhra Pradeshassembly has been raised by just 200% recently and the additionalconveyance allowance paid to disabled bankers is a mighty sum of 400per month.Oh god! how much tax should I have to pay this year as a result ofthis conveyance allowance?

Geetha Shamanna (geetha@millernorbert.de)

Hi Vamshi,
Muscular distrophy is not just a disability, it is a terminal anddegenerative condition which gradually deteriorates until the patientfinally dies. People with this condition suffer a great deal as it worsens.It can in no way be compared with blindness, deafness or other suchdisabilities. While considering euthenasia in case of normal disabilitiesshould be categorized as outright criminal, terminally ill patients shouldbe given the right to decide about their own lives and should be allowed todie if they wish to. Suffering through such conditions is pointless if thereis no hope in sight.

SC Vashishth, Advocate-Disability Rights (subhashvashishth@gmail.com )

Dear Friends,

We all know MD is a degenerative condition and gradually the muscle fibres gets replaced by fatty tissues with no muscular strength left. Its starts from limbs and gradually moves on the central body organs. The mental faculties remain intact in MD has not been related to mental retardation etc. Its only a genetic conditions and often girls are silent carriers of the condition and boys get affected more.However, with regular exercise and balanced diet life span increases and with support systems it can be sustained for many years. We have live examples like Mr. Sanjeev Sachdeva who is a person with MD and has been serving as Class I gazetted officer in Indian Parliament. I have seen him for past several years, his zeal to social work and community support has further enhanced and strengthened despite the degenerative condition. He is currently the director, Sanjeevani - an NGO and working for national trust in running "Sahyogi Scheme of national Trust." There is also a Muscular Dystrophy Association in India.

I feel that Govt. should provide support structures to this family and may be either support the family with requisite supplements or alternatively with consent of parents and the children have these children in the state run institution if the parents are unable to look after and meet their needs. There is a larger need of social security for such children with disabilities and all persons with disabilities in distress and in need of support. Its ignorance and lack of support that parents are seeking mercy death. No parent would like to see his/her child be killed, even if the child is disabled. Its only apathy of society, Govt. and lack of support system that people are forced to think that way. Also should what right we have to take away a life if we can't give a life to some one. The incidence is an open slap to the social justice department of the state who have consistently ignored this family.

Deepak Singla (deepakkumarsingla@gmail.com)

Dear friends

As someone said there are people who r suffering from these problemsare still hopeful and living with full zeal, there is no doubt in thatfact. I am a visually handicapped and one of my brothers is alsovisually handicapped. In my family, i.e. maternal side, there are manymembers who r suffering from MD. It is difficult to live with such aproblem but they are still giving tough fight to the challenges. Iwould like to say on this topic that our Hon'ble President should givea kind consideration to the request of the parents and should extendhelp from the Government side so that the children could get properhealthcare facilities along with education.

Sanjeev Sachdeva (sanjeevsach@hotmail.com ), Director -Sanjeevani

Dear All,

I have been thinking since morning how to react and respond. Subhash thanks for your kind words about me. Unfortunately or fortunately i am one of the very few again very few privileged persons with economic independence but some issues boggle my mind. This kind of mercy killing request by parents having children with Duchenne MD is not new to me. In the past 3-4 years many such instances have come up. People like me and all well wishers should accept some sort of responsibility. We have not done anything concrete except lip sympathy. These instances "awaken our souls while someone somewhere silently suffers and awaits death" No one invites Disability, No one would prefer to be born with or afficlited with any ailment or disease at any point of time. Infact we as Persons with Disabilities we accept whatever has come in our life. It is the family- mainly parents who suffer the most awaiting miracle to happen. No monetary support or compensation can suffice for the pain, trauma and uncertainity about their children or adult, after their death. Live Role Models with MD like Anjali, Sanjana, Virendra, Ankur, Raja (Rajasthan) need to think on Social Safety Network. Why MD is not included under Multiple Disabilities under the National Trust. Think and take action. Life is a beautiful gift of God.... lets live it to the fullest come what may (Shayad Kehna Aasan Hai )Can't say more than that.

Ms. Sanjana Goyal, Indian Assn.of Muscular Dystrophy, Hospital Road, Solan , H.P. http://www.iamd.org/, sanjanagoel@gmail.com

Dear All,

I strongly condemn Geetha, and am thankful to rest all who have taken out little time to give their comments on this issue.Your comments will go a long way to bring a support system for such families.as Sanjeev says rightly that this not the first time it's happening in our country. The only thing I would like to say here is, we should have a support system for families where ever there are persons affected with muscular dystrophy. Had there been a support system /awareness in the country ,the children would not have reached this condition. We as a very small group cannot reach each and every person affected with this cruel disease.And of course Government not only in Uttar Pradesh but in the whole Nation should take THIS CAUSE seriously. I assure you all that by tomorrow we will be in touch with the family and not let our children die like that. SAD PART IS THAT THE CHILDREN HAVE REACHED THIS CONDITION WHERE THEIR SUFFERING HAS INCREASED SO MUCH.--

Subhash Chandra Vashishth (subhashvashishth@gmail.com)

Dear Sanjana,

I laud the efforts of the Muscular Dystrophy association in coming to aid and sensitizing society about this condition. However, lets us no condemn Geetha or the parents or any body else who might have favoured mercy death looking at the pain and suffering for every one has a right to express their views and concern based on their experience. The right way would to be to put up a right picture of a rights based society before such people. I am sure No parent or socially awakened people like Geetha would ever think of allowing the children die had the social support structures were little better. Lets join this cause in supporting this family though innumerous ways - writing to all concerned and finding an organisation who can get in direct contact with the family. Thanks Sanjeev for your considered views. Can something be done on behalf of Sahyogi and National Trust. I agree the condiiton MD per se is not covered under National Trust Act, but when you have such degenerative physical disability requiring physical support for day to day care- it is deemed to be a multiple disability and thus covered under NT Act.

Sanjeev Sachdeva (sanjeevsach@hotmail.com)

Need of the hour and concentration shall be on support services. Sahyogi Scheme might offer little respite to family. Sanjana's and IAMD and Goyal's contribution in bringing MD into the National scene is beyond imagination. Hats off you initiate, i follow

Divvya Bajpai, Public Policy and Management GroupIndian Institute of Management, Calcutta, divvyabajpai@gmail.com

This email is a series of communication about the request by parents of 4 children aged 10 to 16 who are leading a vegetable life as they are in the last stage of Muscular Dystrophy. This intro is for those of you who i have included in the reply in Bcc. If you would be spending some time toread the email, your views or reply to me are welcome. My apologies to anyone who would not have preferred to get this email.

I would not condemn Geetha. She has a valid argument about what might be in the best interests of a terminally ill patient. There is a fear and disdain of death that might lead us to reject euthanasia when a patient who is in terminal stage of Muscular Dystrophy is in deep suffering. I believe in afterlife and rebirth so it does not bother me if i were to die today itself!

If these children can be helped with support of various kinds and can lead a life like my mother (almost 20 yrs of gradual decline), uncle do where they are able to a look after themselves to whatever extent as they remain confined to bedthat is the way to go, of course. Can't really comment unless i knew the graveness of their condition. from the mails below, the parts in different colours are dreams that we have of future and towards which we should work/walk consistently! To mobilise, support each other!

People get motivated by various things in life. For e.g. i got motivated to move towards public policy to work further on these issues that includes concerns of those inflicted by mental and physical challenges/illnesses/disabilities, and the families or others who support them. Happy to get to know today of other people besides Sanjana who are inspiring. for myself, if this is what life has to hold for me, i will live graciously, work, raise awareness, create support systems if i was afflicted by a serious degenerative illness (God forbid it, of course!) and would prefer to be granted euthanasia if i turn into a vegetable and had to be made to survive somehow for a year or more.

Mr. Yogesh Sharma yogeshs@denonline.in

Dear All, No parents will ever opt for that but what do they do when there is no hope. We lack the support systems in metros, how do parents take care of four sons and that too in some remote area. I feel the most important thing is to know that are we or any other organisation is really equipped to reach this family and able to extend them some support.

Manish Sawhney, msawhney@eicher.in

Dear Divvya ji, Your views and encouragement about supporting each other are most welcome and appreciate your positivity towards life and its challenges. Life is not easy for anybody and it all depends on each person how he takes each challenge and difficulty ... i know it is easier to talk for person like me who is not directly suffering.. but a lot depends on our own will and our thoughts ... We have another live example of a disabled person - Mr. Rajender Johar in Delhi who has been confined to bed since many years. However just with his sheer will, he is today running a full organisation called "Family of Disabled". Due to his spinal injury he cannot get up and is dependent on his care taker, but he has helped so many disabled people to earn their living and live respectfully. Death is inevitable but we are not born to decide when to die and how to die. We have taken birth to live, as best as possible.Today if we start advocating the suicide or a mercy killing, then who will decide how much suffering is enough to exercise that option ?.. is a BIG question. With all due respect for the sufferings of families with multiple MD affected children, Losing the battle without fighting it is not an option and it will only encourage the pessimistic scenarios of losing our individual battles against MD rather than finding and working towards its solutions. For the situations like subject case of 4 sons with MD, we should strengthen the cause that our friends - Mr.Sanjeev, Ms. Sanjana, Ms. Anjlee and others are taking up with the Govt. i.e. the right to have an attendant per patient and the adequate care facility for MD patients. But nothing would happen unless we all unite and organise ourselves. And a major obstacle is that may be we need to create a centralised database with the collective support of these organisations & individuals , that can be taken to the govt. to show about the extent of the problem. Let's join hands and take this cause further. Let us strengthen the existing support groups and create more wherever required. warm regards,

Sanjana Goyal, divvyabajpai@gmail.com

Dear all, we are in touch with the effected family. Mr. Jeet Narayan says that he has to pay more than Rs.one lac to a bank. Earlier he was the owner of a tent house,which is now ruined due to non payment and huge bank liabilities. Now his mother doesn't want mercy killing any more. In fact they thought that no one in the world suffers the way they are suffering. the media people are saying that , the 'effort' has become fruitful. 

We will be in touch with the Commissioner Mirzapur by tomorrow. We shall try to generate as much as fund as we can to provide him interim relief . Right now money will bring some relief to the affected family. We should try to see that his previous business "tent house'is on line again. This family has one normal daughter and a normal son for whom we need to create an environment so that they become an instrument to up bring the affected family. Genetic testing for the girl will be provided by IAMD. VOLUNTEER FOR THE CAUSE

Again to Jantar Mantar: Education bill 'flawed', will move Supreme Court: Expert

Dear all!

I think we should not be befooled by the false promises of Ministers - who as many say - are hurrying up to finish their 100 days agenda and have been bringing up bills in haste without consulting the stakeholders and without public scrunity!

I am personally not convinced with what media reported today with regard to RTE and disability. Mr. Anil Sadgopal and others have decided to move Supreme Court against the Bill in the present form.

Do you think we can join in the Dharna again at Jantar Mantar and join hands with Mr. Sadgopal & others against the RTE Bill in present form and seek to include disability in to mainstream business. The bill is flawed on many other issues also. And unless these flaws are addressed, inclusive education will only remain an utopia and never be realised!

And I sincerely believe that while we strongly advocate and talk of inclusion in the mainstream schooling system, the sector we work with will also suffer the same issues in these mainstream schools. The following issues concern the education and early intervention of children with disabilities also:

(a) Non - inclusion of children from 3 years to 6 years age group in the bill while the Govt. Schools have started admitting children for pre-school.
(b) No support or talk of community schools concept
(c) No system to tackle fees hike in private schools
(d) No clarity on how govt. will make re-imburse the money spent on students.(e) If it is a bill for rights of children then why children up to 14 are only covered? If the law doesn't consider under 18 to be adult - then why not include children up to 18 and below. Also in case of Disabled it could be raised to 21 from present 18.

Besides this, disability related clauses like can also be included:

(a) Relegating disability to chapter V of PWD Act and not mainstreaming the issue in the bill
(b) Non-addition of Children with disabilities in definition of "Disadvantaged children"
(c) Non-inclusion of Special schools
(d) No system of re-imbursing money to special schools

The MSJE pays a paltry sum to NGOs for running schools, under grants which is subject to reduction by certain percentage every year! Why can't Govt. re-imburse education per child to NGOs also on the same pattern? Why discrimination among disabled and non-disabled children. If the money is earmarked, many NGOs, private institutions & community schools, private and govt. schools would come forward to include children with disabilities.

Also mere statement of Mr. Sibal in the Parliament that disadvantaged children would include disabled children holds no water in the eyes of law. Mr. Arjun Singh had made a very bold statement on the subject few years ago but that remained a statement till date. Therefore, let us not believe on the statements of politicians and we should not rest till it is added in the legislation itself.

Also it is a sufficient ground for review that the bill had been introduced and passed by both the houses without a single public hearing for a legislation with such far-reaching consequences. We had no time to discuss it and its ramifications in its totality and only adhoc issues could be raised in the protest!

Click here for Addditional Reading for Meri News

Now AISA and All India Forum to Right to Education have decided to hold a public hearing and thereafter go to Supreme Court agaisnt it. Here is the call:


A Public Hearing on the Right to Education Bill
and UPA's Other Proposals Towards Commercialization of Education
August 7 (Friday), Jantar Mantar, 11 am Onwards

Jury Members:
Prof. Anil Sadgopal, noted educationist
Prof. R.K. Agnihotri, Delhi University
Prof. Minati Panda, JNU
Prof. Nawal Kishore Choudhury, Patna University
Dr. Azra Razzak, Jamia Millia Islamia
Colin Gonsalves, Human Rights Law Network
Kedarnath Pandey MLC, Bihar, Teacher Leader
A. Narasimha Reddy, Vice President, Andhra Pradesh Save Education Committee

The UPA government has passed the farcical “Right to Education Bill”: and the MHRD is busy touting this as a "historic" piece of legislation that will finally open the doors of education and empowerment to each and every child of the country. From its title, the Right to Education Bill passed on 20th July by the Rajya Sabha and on 4th August by the Lok Sabha suggests that its aims to make education a basic right available for all. Sadly, nothing could be further from the truth. The RTE in its present form is a farce in the name of genuine right to education - it designed to keep in place the discriminatory, multi-layered education system that currently prevails. In 1993, in the Unnikrishnan judgement, the Supreme Court declared that from birth until the age of fourteen, children were entitled to free and compulsory education and this was accorded the status of a basic right. This is how the genuine Right to Education is best defined.

In contrast, what the new bill promises is laughable. It states:

Ø That 25% seats in private schools will be reserved for poor students for "free" education in private schools. The government claims that it will pick up the tab for the tuition fees for these children. However, the fact is that the government only promises to provide “vouchers” to poor children equivalent to the admission fees of government schools. Do Mr. Sibal and the MHRD seriously believe that the fees in private schools and government schools are in any way comparable? Also, how will these children from poor families pay ‘picnic’ fees, textbook ‘fees’, sports ‘fees’ and other such expenses that private schools regularly extort?
Ø Even if poor students manage to survive until Class 8, what will happen after this, when the government stops paying their fees? These children will be out on the streets once more, while those of their classmates who could pay the exorbitant fees, will pass Class 12 and go on to enter the hallowed portals of IITs, IIMs or prestigious foreign universities. There is one answer to all these complexities — a Common Schooling System where every school [including the private schools] will be a neighbourhood school. But it is this one solution that all the torturous provisions of the bill could not come close to. The RTE is completely silent on this crucial question.
Ø The RTE is nothing but a blatant attempt of the UPA government to shirk its responsibility to provide universal, affordable and quality education. Instead of handing over education to private schools, shouldn’t the state be working to set up better government schools? We all know how the rising fees of private schools is putting a strain even on middle class budgets. The recent agitations in Delhi against the obscene fees charged by private schools is proof enough.
Ø This is not the first time that the "free" schooling has been promised - residents of Delhi are well aware that private schools in the city were provided land practically free of cost by the government, in return for which supposed to give "free" education to poor children. Exactly how many poor children are able to access these elite facilities is there for anyone to see.
Ø What is also worth noting is the near-consensus in the parliament to support the farce that the UPA is peddling in the name of “Right to Education”.

In both the Rajya Sabha and the Lok Sabha, the RTE was passed unanimously with no opposition whatsoever. The RTE in its present form has several fundamental, structural problems and ambiguities that shelve it of any potential to really provide fundamental right to education as mandated by our constitution and the landmark 1993 Unnikrishnan judgment of the Supreme Court. What is shocking is that the UPA as well as the NDA government before it are trying their level best to undermine and restrict the scope of the landmark Unnikrishnan judgment of the Supreme Court and the fundamental right of education underlined in the constitution under the garb of this "Right to Education Bill".

The farcical Right to Education Bill however is just part of the larger package of commercialisation and privatization that the UPA government has in store. 100-day agenda announced by the Ministry of Human Resources Development (MHRD). Kapil Sibal has promised ‘radical’ reforms in the country’s education system. As you are well aware, the ‘reforms’ in education which the MHRD is advocating are nothing new. They are but a ruse for the government to escape its responsibility towards education and deliver it entirely into private hands. More than a decade of anti-privatization struggles by students have forced Governments to change their vocabulary; to ‘dress up’ their privatization-commercialization agenda in a grand cloak of ‘reform’.

It is in the context of the UPA government's covert plans to sell out our education system to the private sector in bits and pieces that the All India Forum for Right to Education (AIFRTE) and AISA are organizing a Public Hearing on 7th August 2009 (Friday) at Jantar Mantar from 11 am onwards. This pubic hearing will be attended by a wide cross section of society - intellectuals, teachers, students, and residents of Delhi from different sections of society.

We request you to attend the programme.

Ravi Rai, National General Secretary, AISA
9868661628


--
Warm regards,
Subhash Chandra Vashishth
Advocate-Disability Rights
Mobile: +91 (11) 9811125521

DoPT fails to give IAS post to Hearing Impaired Aspirant despite clearing the exam thrice!

Dear Friends,

We saw a similar fight by few others including Shri Ravi Kumar, a candidate with Low vision who cleared Civil Services exams almost thrice and was denied by DoPT because no post was identified for disabled! Even after court's verdict, the PMO had to intervene and issue a consolation that posts have been identified for the disabled.

However, this case of Shri Maniram reveals the inherent apathy and lackadaisical attitude of the Govt. of India to include people with disability in the mainstream despite clearing their exams and competition at their own merit - forget about reservations and relaxation of standards!!

Such incidents only indicate that MSJE and GOI have failed the disabled segment, the PWD Act and the UNCRPD that India signed with so much fanfare! When this Government would stop looking at Disability from a medical angle of percentages ? If the person can prepare and clear the exams at his own merit at 100% disability then what is the fun of insisting a 70% disability to be eligible for which he has been made to undergo a cochlear implant? Now none of the Govt. Hospital has facility to measure the degree of disability!

It may be relevant to mention here that Shri Maniram is already working satisfatorily in Rajasthan Administrative Service having proved his mantle there but DOPT and Central Civil Services seem to purposefully perpetrate discriminatory exclusion agaisnt those with disabilities.

Is this because the central bureaucracy doesn't want the disabled segment in its fold? Is it because the DoPT doesn't know about abilities inherent in the human diversity such as those with hearing disability ? The issue is of attitude and approach which is negative and unwelcoming to those experiencing disabilities and should be condemned.

Such practices should be discouraged in the strongest words possible as these perpetrate the age old practice of looking at disability from medical model. Why can't the assistive aids and devices with modern technology be used to provide reasonable accommodation to Maniram to facilitate him a better and congenial working atmosphere?

I think the Govt. doesn't seem to have understood the concept of reasonable accommodation and their ignorance is proving to be so dear to thousands of aspirants. The inaction on the part of Govt. deserves shame and the sector should stand up united against such discrimination.

This is a fit case where he should be appointed immediately with all benefits like seniority of service, back pay and other benefits besides compensation for the mental agony and harassment suffered.

DoPT should be penalised for failing to facilitate his appointment since 2005 despite clear cut rulings of Courts, Directives from PMO and stated legal position! Has the gentleman filed any case in the court of law seeking immediate appointment and compensation?

Warm regards

S C Vashishth, Adv

Click here to read the article from source: Govt deaf to Maniram's cry for justice

Rema Nagarajan, TNN, 26 July 2009, 05:31 am IST

He's deaf and has cleared the civil services exam three times — in 2005, 2006 and 2009. And yet, he continues to be cheated of his dream job — joining the Indian Administrative Service (IAS). The first time, Maniram Sharma was turned away by the department of personnel and training (DoPT) because there was no policy of accommodating a deaf candidate. The second time he cleared the exam, the policy bottleneck was sorted out. But with a rider — only candidates with less than 70% hearing disability qualify for the IAS provided they cleared the exam. Maniram, being 100% deaf, was not eligible for the service. But he didn't give up.

To improve his hearing, Maniram had a surgical cochlear implant, costing Rs 7.5 lakh. He appeared for the IAS again this year and achieved the highest score in the hearing-impaired category. But his medical examination categorized him as 70% disabled — just a shade higher than the qualifying disability level. The finding itself was strange. Of the 791 candidates selected this year, Maniram's score in the interview was among the top 50 (220/300). And he scored these marks in an interview that required direct interaction — an improbable feat if he were 70% disabled.

Previously, when Maniram had cleared the written exam and reached the interview stage, an LCD projector was used to put questions on a screen. That was in 2005 and 2006 when he was 100% deaf. ENT doctors in Delhi's RML Hospital, where he had his cochlear implant, have certified he has a 100% permanent hearing impairment, discounting the implant done by its own doctors which has now helped him hear.

The ENT doctors' board of Sawai Mansingh Hospital in Rajasthan, his home state, constituted to assess Maniram's hearing, has said that audiometry and other specific tests are required to assess hearing in a patient with a cochlear implant. And these were not available in the institute.

Dr J M Hans, former head of RML's ENT department, who conducted the surgery on Maniram says that the only way to measure the hearing of a person with cochlear implant is with an instrument called electrical BERA or "brainstem evoked response audiometry", which is not available in any government hospital. "The government ought to allow the test, which is available in the private sector, to be used by candidates," he says.

Dr Han's observation raises another question - if this instrument is not available in government hospitals, including RML, how did the doctors measure Maniram's hearing loss as over 70%?

Maniram is from Badangarhi, a remote village in Alwar district, which doesn't even have a school. He started losing his hearing at the age of five, becoming totally deaf by nine. His parents, both illiterate farm labourers, could do little to help. Yet, Maniram continued trudging to the nearest school, 5 km away and cleared class 10 standing fifth in the state board examination and cleared class 12 ranking seventh in the state board.

In his second year in college, he cleared the Rajasthan Public Service Commission (RPSC) examination to become a clerk-cum-typist. He studied and worked during his final year and topped the university in Political Science. He went on to clear the NET (National Eligibility Test). He then gave up his RPSC job and became a lecturer. Not satisfied with that, he became a Junior Research Fellow and completed his Ph.D in Political Science during which time he taught M Phil and MA students in Rajasthan University.

Having completed his Ph.D, Maniram got through the Rajasthan Administrative Service (RAS) and while in service he started trying for the civil services. Will his efforts be in vain?

You might be tried under Criminal Law if you call a disabled person on his disability!

Dear Friends,

This seems to be a path breaking development and Shri D N Chowdry deserves accolades. In order to ensure dignity and respect as equal citizens of this country to the persons with disabilities, Maharashtra State Legal Commission has submitted a report recommending that insulting a person with disability for his disability should be considered as a Crime under Criminal Law and be punishable.

An overall welcome move

This is a welcome move as even today people with disabilities are discriminated against; called by their disability not by their name, especially in rural and underdeveloped areas and not given their due rights which the Indian Constitution guarantees them.

Such recommendations if enacted as an enforceable law can change the ground situations entirely. Any such law is actually a great level player for marginalised segments and gives them a ready tool to enforce their equality and rights on society if the society lags behind in accepting them as equal partners deserving equal dignity and respect. This is on the lines of The Scheduled Castes and The Scheduled Tribes (Prevention of Atrocities) Act, 1989 that was enacted to instill a confidence and to stop and prevent atrocities against dalits. Proponent of Dalit Rights term this Act as an important milestone in their fight for equal rights in independent India.

Why not insert such provisions in the Persons with Disabilities Act?

I also feel, we Indians are so proud to enact a number of laws and then carrying them on our back without any implementation mechanism. The existing central law like The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation), 1995 are yet to be implemented in full letter and spirit. This law doesn't have prevention of atrocities as a separate section but is well covered under non-discrimination clauses, however, without invoking any criminal procedure for failure to implement or for discriminating. Thus if such a clause is added to this Act, the Act can actually become very strong.

Cautious lest the law is abused!

However, such a law in favour of disabled people should be taken up with a caution! We have seen in the recent past that the SC/ST Act has been largely misused against other members of society to settle personal scores and with vested interests and even used in political circles. Recently, the State Congress Chief of UP was got arrested using the provisions of SC/ST Act by Ms. Mayavati, the Chief Minister of UP!! Thus sufficient provisions need to be made so that the law is not misused.

Implement existing laws and UNCRPD

There is an urgent need to see that the existing laws and especially the UNCRPD (UN Convention on the Rights of Persons with Disabilities) that has acquired for force of domestic law after its acceptance and ratification by India, are implemented in true letter and spirit and a strict and time bound mechanism is ensured to see that the rule book prevails to achieve the mandate of these socially equalising enactments.

Warm regards

Subhash Chandra Vashishth

Here is the News: Click here to read from Source

Insult on physical disability could be considered as punishable offence

Correspondent Thursday, July 16th, 2009 AT 10:07 PM

MUMBAI: Insulting a physically challenged person on his disability might soon be considered as an offence which would be punishable. A report submitted by the Maharashtra State Legal Commission to chief minister Ashok Chavan on Thursday emphasised that “insult on physical disability should be considered as an offence.”

The 21st report submitted by D N Chowdry, chairman of the Commission, recommended that insult on physical disability should be considered as an offence and there should be a provision of punishment.

The State government in April 2009 had asked the Commission to make recommendations regarding handicapped act and accordingly a 26-page report was submitted. Chowdry in the report recommends that calling a handicapped person on physical disability, speaking to them with disrespect, insulting on physical disability or abusing on disability as an offence and there should be a provision of punishment,.

Chowdry further said, “It was necessary to recommend that a handicapped person should be treated respectfully in the society. There is no such provision in the prevailing Central Act.”

Leading International Disability Organisation portrays India without J&K!

Dear Friends,
I am shocked to see the attitude of a leading UK based deveopmental organisation called ADD having its branch office in India. I happened to visit its website and I couldn't believe what I saw. It shows an Indian Map minus its head i.e. J&K.

Is this justified by any means ? Should an organisation of such a stature stoop so low? Doesn't this hit us so harshly at our hearts? Can an Indian tolerate this?

May be whole sector need to react. Its on us. What do we want - our integrity and sovereignity or charity cum developmental work at its cost from an offshore organisation. I can not believe that is by mistake. It is purposeful and needs to be rejected and refused. We do not want such organisations to function in India if they do not agree to the stand taken by we the people of Republic of India and its elected Government.

Need your support! I wrote the following mail to its new Director Mr. Sebastian.

To
Dr. Sebastian
Director- ADD
4005, 19th Cross,
Banashankari II Stage Extn,
Bangalore 560 070, India

Dear Mr. Sebastian,

This refers to our telephonic discussion a while ago on the subject.

As I said I am deeply pained that an international developmental organisation of this stature especially working in India has such flaws on its website http://www.add.org.uk/India.asp which no Indian would tolerate.

I strongly object to portrayal of Indian Map in its present form i.e. without J&K. This relates to the integrity and sovereignity of the nation.

I appreciate that you have joined recently and would take time to understand the official work related to the important post that you fill but this matter must be immediately dealt with before it blows up in ugly proportion!

My good wishes to you on joining this august organisation as its Director and hope we have a continuous dialogue on many common areas in disability sector.

Warm regards
Subhash Chandra Vashishth
Advocate-Disability Rights,
New Delhi, India
Mobile: +91 (11)