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
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
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.
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?
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.
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.
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.
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.
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.--
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.
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.
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.
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,
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
