How can we avoid that children born disabled are stigmatised as a ”burden” to their own family?

Publié le 30 May, 2017

While the tribunal of Limoges has just recognised the university hospital of Limoges as guilty for having not diagnosed Down Syndrome in a child, Danielle Moyse, philosopher and expert for Gènéthique, questions the legitimate reasons for compensating families who were not able to choose abortion after a mistaken prenatal diagnosis.


The law authorises abortion until birth if the diagnosis reveals a strong suspicion of “particularly serious and incurable abnormality” in the unborn child.


It was in reference to that law that the hospital of Limoges was condemned on April 19th 2017. Indeed, the doctor in charge of following the pregnancy, of which several prenatal examinations seemed to indicate that the little girl would be born with Down syndrome, judged it was not necessary to have recourse to amniocentesis because of a miscalculation and misinterpretation. The trisomy of the unborn child was therefore not detected, and the family engaged in legal action to obtain compensation for the damage resulting from this wrong diagnosis.


The law authorising abortion justifies the penalty


The little girl’s mother who is now 7, received 50 000 euros, the father 30 000 euros while the brothers and sisters’ request was turned down.

Even if the mistaken diagnosis, or even the medical error, are verified, such a case is the very consequence of a law which authorises abortion on medical grounds: no law, no right is ever given without a perspective of penalty in case the possibilities it provides are interfered with. In this case, as the law authorising abortion on medical grounds is always reliant on a medical diagnosis, it also opens the eventuality of a judicial recourse if the diagnosis is incorrect. In this case, and with regards to the millions of euros generated by antenatal tests, the 80 000 euros granted to young Maylis’ family are, in fact, not that much.


Questions of ethics and legitimacy


As usual in this kind of trial, the reasons given to engage in such a procedure bring up several ethical questions. Among others, the psychological damage caused by the lack of preparation for the birth of a disabled child” seems to compete with “the loss of opportunity” for the mother “to have recourse to abortion on medical grounds”. Likewise, among the arguments are “disorder in the conditions of existence of the social and family life” caused by the birth. The parents thus asked for compensation for themselves as well as for the little girl’s brothers and sisters.


If the diagnosis had been properly carried out, would it have enabled the family to be properly prepared for the birth of a child with Down Syndrome, or prevent it from happening? With statistics revealing that 95% of pregnancies end with an abortion on medical grounds when a chromosomal abnormality is detected, we can presume that Maylis’ parents would probably have chosen the second option. Is “the lack of preparation for the birth of a disabled child” a simple alibi, or does it cast doubt on the true reasons that led the family to go to court? Does it not also cast the light on the doubts of society concerning the legitimacy of this kind of practice?


The lack of preparation for the birth of a disabled child given as an argument


Whatever. It opens a small retrospective possibility for the child to be born, even if the diagnosis had been right! Parents are compensated because the birth is a “damage” which never would have happened if the doctors had not been mistaken and because, if they had known -before the birth- about the child’s particularities, they could have better prepared!


I choose to see, in this second argument, a breach, however small it may be, in the mentality that currently leads families to file a complaint for the damage of having a disabled child after a mistaken prenatal diagnosis. One can see how the argument timidly expresses the awareness of how violent such a statement can be for someone who is declared a “burden” to his own parents, and even siblings.

One can see how, if “compensation” was granted on such grounds, we would slowly but surely enter a very alarming spiral: brothers, sisters, grandparents, uncles and aunts, etc… could start asking for compensation. And from there, as a family is nothing less than a reduced element of society as a whole, we could end up thinking that the birth of a disabled child is detrimental to the whole society!


To prevent the advent of such a hateful perspective, so openly related to eugenist presumptions, the judges rejected the siblings’ demand for compensation, and although the lawyers pleaded on the grounds of “not having the opportunity to abort on medical grounds” after a mistaken diagnosis, they also brought up “the lack of preparation for the birth of a disabled child”.


Protect disabled children from the symbolic violence of these trials


In fact, why couldn’t this argument be the only one invoked? Indeed, quite often families who launch this type of procedure claim that they are doing so to compensate for the poor funding granted by society for the child’s education. Why shouldn’t the “psychological damage” of the lack of preparation for the birth of a disabled child be a reason for awarding comparable compensation to the families to that awarded here? Who said that “psychological damage” was less serious than others?


Would this not be the only argument which would spare the child from the statement that he is, at least for his close family, a burden? Wouldn’t this be the only argument that would protect the child from the considerable psychological damage (for which nobody has though to compensate him) of feeling he is a burden to his family?


Should we not ask that the funds granted to parents be increased so as to minimise the symbolic violence inflicted on disabled children, and so that parents no longer have the desire or need to engage in such judicial actions, other than to plead for “the lack of preparation for a particular birth” ?!


Against stigmatising disabled children


Of course, no one is being fooled, as everyone knows very well that the birth of a disabled child gives rise to mixed feelings. But this can also be the case for any birth. However, only disabled children find themselves stigmatised as “a burden” via legal action! The only way to put an end to this discrimination would be to accept the lack of preparation for the birth as the only valid reason for compensation to parents of disabled children, who were not identified as such before birth. Besides, it is true that, in these cases, children do not benefit straight away from all the medical and social treatments to which they are entitled.


Of course, in most cases, people will object that detecting Down Syndrome leads women to ask for abortion! True, but not every time. And many parents who did not know about their future child’s characteristics finally realise they are happy to have such a child, the way he is, with his capabilities and limitations, whatever the suffering they endured together. Why not take advantage of these situations to not throw at the face of disabled children that they are a “burden” after science failed to predict their birth?

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