Most young girls find the experience of menstruation painful and distressing. Fortunately, they have the opportunity to have this experience explained to them by their mothers or some older person. But Alison Thorpe cannot explain menstruation to her 15 year-old daughter because she, Katie, suffers from severe cerebral palsy. Katie cannot talk or walk. She understands very little of what is said to her. Her mother, who is also her carer, has asked that doctors perform a hysterectomy on Katie so that she can avoid the trauma associated with having her periods. Alison's request has been met with severe criticism. So what are the ethical issues surrounding her request and would it be morally wrong for Katie to undergo a hysterectomy?
The opposition towards Alison Thorpe comes from several different directions. One line of argument is that the request is being made in her interests more than it is in the interests of her daughter. The claim being put forward by some parents of those with cerebral palsy as well as by some adults with the condition is that Alison wants to make her own life easier.
Alison, like many parents who are full-time carers for their children, works hard to look after her daughter. The practicality of dealing with Katie's menstruating is hardly an inconvenience that Alison is trying to avoid given all the other care that she gives her daughter. Even if people believe that she is wrong to request a hysterectomy for Katie, their argument ought not to be based on the suggestion that she is trying to make her own life easier by not having to cope with Katie's periods.
Alison's request has also been criticised on grounds that it will set a precedent for other people with disabilities and that hysterectomies will become somewhat "routine" in cases of cerebral palsy. This is clearly not the case. Not everyone with cerebral palsy is affected by it in the same way and to the same degree so there are girls and women with the condition who will not be affected by menstruation in the way that Katie might. For them, a hysterectomy would not be appropriate. If there are fears that giving Katie a hysterectomy will set a precedent for other people who suffer to the extent that she does both mentally and physically, this might be a valid concern. It is up to the law, then, to ensure that it is not the hysterectomy but the choice to consider one that becomes a precedent. Of course it would be morally wrong if everyone in Katie's situation were made to undergo a hysterectomy. But surely it would not be wrong if after careful consideration this choice were open to the families and, in particular, to the carers of those in Katie's situation.
Another line of criticism is based on medical necessity. It has been argued that there is no medical reason to remove a healthy uterus and when one considers this point in isolation, the advocates of this point of view are right. A healthy uterus per se ought not to be removed for precisely the reason that it is healthy. But as the uterus exists inside the female body and not in isolation, its preservation or removal ought to be considered in the context of the overall mental and physical health of the individual. If not removing Katie's uterus is detrimental to her mental health and of no benefit to her physical health, then it is difficult to see why it is wrong to remove it even if it is healthy.
Perhaps the most emotive response to this case is that performing a hysterectomy on Katie somehow compromises respect for disabled people and their reproductive rights. Alison is doing just the opposite. By requesting a hysterectomy for her daughter, she is increasing the chances of Katie's leading a life with dignity, and minimum pain and trauma. Her goals for Katie are the same as most of us have for ourselves even if the means of achieving them need to be different. If one were to remove the healthy uterus of an able-bodied fifteen year-old girl, for example, concerns over rights and respect would be warranted. The same concerns might hold true if one removed the uterus of some others with milder or different disabilities. But for Katie and others in a similar situation, respecting their rights entails recognising that because their needs and circumstances are not typical, decisions surrounding their care are also not typical. We have a duty to protect the most vulnerable members of our society even if the same actions, under other circumstances and towards other individuals, would be wrong.
The case has also met scepticism because it is believed that Katie's experience of her periods might not be as traumatic as her mother anticipates. This suggests that Alison may have got it wrong when thinking about how bad menstruation might be for her daughter. Of course, it is possible that she might be wrong but for her position as a woman, mother and carer to be challenged by the critics, most of whom are men, seems odd. Given their gender, their perspective on this issue is bound to be somewhat limited and in any case cannot possibly be more informed than that of Alison. Perhaps the only point for Alison to consider once again is if there are less invasive options available for Katie but once she has considered that, her decision ought to be respected. We have no reason to believe that she has anything other than Katie's best interests at heart. Moreover, she is better informed about Katie than is anyone else. These two reasons alone are sufficient for us to know that she makes a better judge and decision-maker than do the rest of us.
The ancient Greeks believed that the uterus was the centre of hysteria. From there came the word "hysterectomy" or the removal of the centre of hysteria. All these years later, we see that the uterus is the centre of moral hysteria but contrary to what was then believed, the suggestion to remove it is what's causing people to get hysterical.