Click to play videoA nine-year-old girl in the US, Ashley, who can't walk, talk and has to be fed through a tube, has had a hysterectomy, mastectomy and anti-growth hormones so she remains small, portable and manageable for her parents. Is this a compassionate legitimate way of caring for the disabled or is it a denial of adulthood?
This is a medical and ethical decision few could imagine in which parents and doctors are using medical intervention to keep a child small.
On CNN-IBN’s show India 360 we asked: is it ethical to remake a person's body for the convenience of care-givers?
On the panel of experts were Convenor of Disabled Rights Group, Javed Abidi, Director of Action for Autism, Merry Barua and parent of a special child Shirshendu Chakrabarti.
Barua, a mother of a 26-year-old autistic son, says she cannot even consider doing something like this to her child.
“Whatever the problem is he is my son and that is how I have accepted it. When he was young he was an extremely difficult child. He was hyperactive but I couldn’t have imagined to medicate him to make him quite or to make him manageable,” Barua says.
The challenge of the society is to provide safe zones for special children. Barua explains, “One must remember that no society can be completely safe for anybody, even for you and me. But if the society is not able to provide for our children then that is a failure for the society”.
Parents of a special girl child tend to “do certain changes like removing the uterus of a child to protect them but the question arises is – are we protecting the child or are we protecting the reputation of the family?” asks Barua.
She reasons that if the uterus of a special girl is removed then one cannot even get to know if the child has been sexually abused or not. “All one can do is prevent pregnancy but the child could be repeatedly abused and one cannot even get to know,” Barua explains.
“If we can teach the girl child to manage herself like going to the toilet on her own or to clean herself everyday then she can also learn how to manage herself four days in a month. Many parents have done it so it is not unheard of,” Barua adds.
Justifying their stand Ashley’s parents in their website said, “Unless you are living the experience you have no clue what it’s like for the bed-ridden child or their caregiver”.
Chakrabarti says that he partially agrees with Ashley’s parents.
“One should not adopt a moral superiority. I myself have gone through great difficulties as the parent of an autistic boy. But I still feel that there is something strange and abnormal about this situation that you do not let the child grow into normal adulthood. Now this has been happening for generations. Old people get disabled or completely bed-ridden but you can’t make them shrink. In our country we have all kinds of support like in the form of extended families,” Chakrabarti says.
Agreeing with Chakrabarti, Abidi explains, “That is true but at the same time the incident that we are discussing is absolutely grotesque and I don’t have enough words to condemn it”.
Expressing his anguish over Ashley’s case Abidi says, “And this comes from a place like the US which is a developed society where there are many so-called rights-based societies. This story is not only unfortunate for the child but also for the family. This incident has sent out a very wrong signal”.
Barua believes that Ashley’s case could also be harmful or damaging to other parents who are struggling with disability. According to her it is a “violation of human rights.”
“Coming from the US, a society that claims to be a protector of human rights something like this happens and the doctors have gone along with it. It is simply appalling”.
When asked what Chakrabarti would have done had he been a doctor and the parents had come seeking this kind of a treatment, he says, “I would have outright refused. But the point here is that it is not only horrifying but in some sense it is not unexpected. In one sense this a logical conclusion to technology, a belief that everything can be solved easily”.
Earlier this month in Pune a young mother killed herself and her two sons because both the children were mentally retarded. And now the Ashley case has become the talking point all over the world. Do these instances show the helplessness of the parents and how they are forced to take such drastic measures?
“The case in the US is not arising out of helplessness. The parents have a problem and I think the entire world should protest against the action of Ashley’s parents. As far as the Pune case is concerned, yes, it is true that parents feel helpless. But the Pune family was well to do and yet the mother felt so helpless and aggrieved that she had to take such an unfortunate step,” Abidi explains.
Ashley’s case has led many to believe that this is a typical American mentality that a problem needs a cure.
And Barua believes that the trend is “catching up quite quickly in India too. As far as autism is concerned there is this message coming from the US that it can be cured and all the while the parents have believed it. Parents who cannot afford all this are also willing to spend lakhs of rupees on all this. So rather than treating a child well the idea now is to cure them. Unfortunately this quick fix syndrome is catching up very fast in the cities”.
Agreeing with Barua, Chakrabarti says, “I agree that people are looking for easy solutions to such problems but there are no easy solutions for parents of disabled children”.
The decision taken by Ashley’s parents has led to many speculating that parents can now medically intervene any child who they think is not perfect.
“Yes, it is very scary and Ashley’s parents need to be condemned. There should be laws to take such kind of people to task,” says Abidi.
But is parental expectation for a perfect child the root cause of this kind of mindset?
“It might be one of the root causes. A child is a gift and in that sense we should be happy even if he or she is alive. But worrying about the future is a legitimate worry and that requires organisation, planning and cooperation. Effort is required and why should one give up hope,” Chakrabarti says optimistically.
Barua concludes by saying that the challenge is to create an inclusive society rather than to medically intervene into someone who doesn’t fit the norm.
“Parental expectations not only push children with disability but all children like we saw in the case of the table tennis player. Yes, the future is scary but the fact is that the world is not perfect and we are not perfect so how can we expect our child to be perfect. Change society rather then changing the body of a disabled child,” says Barua.
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