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

Relief by CBSE to All Chidren who come under Definition of Disabled of PWDA- an enabling or disabling provision?

Dear Friends,

The CBSE announced a few months back certain amendments in the bye-laws thereby bringing more relief to the students with disabilities. In comparison to earlier provisions on scribes/extra time & relaxations in subjects, compulsory three languages and 75% compulsory attendance to be eligible for appearing in CBSE Board exams, we have new relaxed provisions now.

While the attendence requirements have been reduced to 60% and provisions of scribes and extra-time of 20 minutes per hour of exam etc have been allowed to all those who come under the definition of "a person with disability" within the ambit of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act- 1995, (in short PWDA) i.e. those with 40% and above disability. This was earlier allowed only to those with Spasticity, Blindness, and Dyslexia & those with physical disability restricting in writing and use of hands. Exemptions from third language was allowed to those with hearing impairments too!

The biggest beneficiaries will be those who did not come under any of the earlier categories allowed exemptions but this benefit would now be even available to those with physical disabilities who actually have no organ limitation in writing the examination and can write as fast as any other non-disabled child could write.

While this can be seen as a new trend to support those who are experiencing disabilities of some or the other kind and to a certain degree as required under PWDA, and to compensate for the lack of equal opportunities for them in the past. But at the same time, it might tilt the balance of convenience in the favour of those who actually don't require it at all. Also, allowing scribes/writer to those who can write for themselves will open up another pandora's box!

I feel a rethinking is necessary when it come to allowing writer /amanuensis to all the disabled children!

On the other hand we see is a cut-throat competition to achieve higher percentages; for you loose out on getting admission to your preferred college or to get selected in MAT/CAT etc merely because of a fraction of percentage in marks. Thus, those who are in genuine need of the facilities of scribes and extra time would actually be at loss in the present system of a mad fight for percentages. Tommorrow these candidates have to sit in competitive examinations like CAT/MAT etc where no extra time is given to all, as of today.

Therefore, unless the Ministry of HRD, Govt. of India, does something seriously about the percentages etc. and number of seats in the higher education, it would only allow these students to get stuck after the CBSE's exams to reach no where!

In fact I would suggest that giving extra time to students has its own advantages. The child will write only that much which he knows or has studied. By this logic, extra time can be given to any one who needs it! It reduced stress; Child performs to his best; Slow writers can even complete the exam to their satisfaction; those with impairments in writing or those using writers/scribes will also get sufficient time to complete. But then it should also be extended in other exams too which a child has to compete immediately after CBSE Exams in order to plan for his career! Otherwise, it might be considered as a stick that further disables rather than enabling!

Regards

SC Vashishth,Advocate-Disability Rights

Click here to Read the New Notification of CBSE

Click here to read the following news from source: CBSE Amends Exam Rules for Disabled Candidates

The Central Board of Secondary Education has announced certain amendments in the examination bylaws. Candidates with disabilities, as defined in the Persons with Disabilities Act, 1995, have been exempted from the examination of a third language.

The previous rule (Rule 23) covered only candidates who were blind, dyslexic or had a speech or hearing disability.

According to the new amendment, candidates covered under the Act appearing for the Secondary School Examination or Senior School Certificate Examination are permitted to use an amanuensis (writer) and will be allowed additional time.

For a three-hour paper, students will be given an extra time of 60 minutes and for an examination of two hours, the duration will be increased by 40 minutes.

Both the amendments cover autistic students as well. These candidates also have the option of studying one compulsory language as against two. “The chosen language should be in consonance with the overall spirit of the ‘Three Language Formula’ prescribed by the Board,” reads the amendment.

Earlier, a candidate (other than blind, physically challenged or spastic) had to pay the fee prescribed for the use of an amanuensis. But, according to the changed rule, the services of an amanuensis will be provided free of cost.

A new rule added to the bylaws also defines a ‘regular course of study’. A regular course of study means that students participating in sports at the national level (organised by recognised federations), shall have to maintain at least 60 per cent attendance. Candidates taking up subjects involving practicals will be required to devote at least 60 per cent of their total attendance to practical work in the laboratory.

Unless a student fulfils the requirements, he/she will not be eligible to sit for the examination. Heads of institutions have also been instructed to not allow a candidate with subjects involving practicals to take the examinations unless the attendance requirements are met as per the rules.

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?

Recognise "sexual orientation" as a source of discrimination-asks NLS

The high court of Delhi may have decriminalised the sex between two consenting adults of same sexes and Supreme Court of the nation also may have indicated that it is in favour of the High Court's well reasoned order, the social taboos, moral brigade & attitudes in general continue to discriminate against those with different sexual orientations than the majority.

Same is the case with people with HIV status, those cured of leprosy. Social attitudes are often difficult to change. Continuous education and acceptance by the young brigade is the only solution. We see that people with different sexual orientation face discrimination at workplace too though their orientation may not be relevant to their work or productivity!

Therefore, now the National Law School has asked the Centre to recognise "sexual orientation" as a source of discrimination against which there should be statutory protection. Our constitution and central laws already provide that there could be no discrimination on the grounds of religion, sex, caste, language, disability, descent, place of birth, residence and race among others. The Persons with Disabilities Act already covers such a protection that there could be no discrimination on the grounds of disability in any matter - be it education, employement, housing or otherwise.

Besides Sexual orientation, the EOC is also looking at adding pregnancy, gender identity, occupation, skin colour, political opinion and age also the grounds of discrimination!

I hope such a move in form of an enactment will give strength to the equality among all citizens of this country including those with diversities, though a large section of our political class and soceity is still divided ! Can we let the life prevail?

regards

SC Vashishth

Here is the news from Time of India, To read from source- Click here

NEW DELHI: The move towards legitimising "gay rights" seems to be getting stronger by the day.

After the Delhi High Court order decriminalising homosexuality, the National Law School has asked the Centre to recognise "sexual orientation" as a source of discrimination against which there should be statutory protection.

The law school wants the Centre to put "sexual orientation" in the list of `grounds of discrimination' requiring safeguard in the Equal Opportunities Commission. S Japhet, director of Centre for the Study of Social Exclusion and Inclusive Policy in the Bangalore school, told TOI, "There have been studies to show that sexual orientation of gays leads to discrimination in employment."

The proposed EOC is an ambitious move to redress the discrimination against social groups in employment, education and housing. These three domains are most plagued by prejudices, be it based on religion, caste or race. It is to be seen if the Centre obliges the law school by moving on its request. An explicit step to bar discrimination on a person's "sexual orientation" will be a big step in legitimising gay rights. The EOC, in the nascent stage of evolution, is likely to be empowered to take a complaint from a group to question the private and public enterprises in question. It would mean that any move to keep gays out of a workplace or a housing colony or an educational institution would invite the intervention of the`discrimination watchdog'.

The N R Madhava Menon committee, which drew up the details of EOC, shortlisted grounds on which discrimination should be prohibited. It includes prejudices based on religion, sex, caste, language, disability, descent, place of birth, residence and race among others. While the committee has said that the list could be kept open to accommodate more grounds in future, the law school has asked minority affairs ministry to include "sexual orientation, pregnancy, gender identity, occupation, skin colour, political opinion and age" in the purview of EOC. Besides `sexual orientation', the law school has also asked the Centre to list a bar on certain "food preferences" as a form of discrimination. It said, "Discrimination based on food preference, when it has a disproportionate impact on a deprived group, should be expressly provided as an instance of indirect discrimination." Sources said the demand from the reknowned institution will test the Centre on branding these contentious issues as forms of discrimination given the divided political opinion. Its acceptance would be tantamount to forcing organisations against "gays" into accepting them.