Parents who froze girl in time defend their actions

[MrsHmmz]

8. This is not about "everyone with a disability", it is about this one particular human being.

It is simply not fair or logical to lump "everyone with a disability" into the same bracket like that; in fact I would go as far as to say that merely doing so is more of an insult to people with disabilities than anything these parents have done! People with disabilities are not some homogeneous group who should be treated exactly the same way - to do so would be unfair and cruel for many individuals (it would be neglectful to treat people who have extreme disabilities that render them utterly dependant on others in exactly the same way as people who are relatively independent, and it would be unfair & patronising to treat more independent disabled people the same as people who cannot think for themselves). People with disabilities deserve to be treated as individuals, just like everyone else, and this means everyone's needs should be assessed on an individual, case-by-case basis, according to the unique combinations of challenges & strengths they possess, and their personal circumstances. What is right for one disabled person might be totally wrong for another. It goes without saying that the treatment being given to this girl would be utterly ridiculous and morally abhorrent if it were applied across the board to all people with disabilities, but that doesn't make it wrong for this girl, and perhaps some others facing similar circumstances. There is a profound difference between someone with a disability that makes their life more challenging but is basically able to function, think, make decisions for themselves, etc, and the kind of disability this girl suffers from. She has the mind of a baby, is unable to move, and has no hope of ever progressing beyond this point. She will never be able to do anything for herself, she will never be able to think for herself, she will never be able to comprehend the changes that happen to her in puberty, and she will never have any quality of life beyond what her parents are able to provide for her. She will always be utterly dependent on others.

These parents are not doing this because they can't stand the idea of their "little angel" growing up, they are not doing it to merely make their own lives easier, they are doing it because they genuinely believe it will make it possible to continue to provide their daughter with some kind of acceptable quality of life, and will protect her from the distress of having to deal with adult problems that her mind is completely incapable of coping with (as a woman I can tell you that the monthly hormonal cycle is hard enough for those of us with the mental capacity to understand what is happening to our bodies, for someone with the mind of a baby it is likely to be far more distressing). Keeping her more physically easy to deal with is not a matter of selfishness on the part of the parents, it really does make a difference for the girl's quality of life - anyone who has to care for a totally dependant and completely physically & mentally incapacitated adult will tell you that there are some things it is almost impossible to do due to sheer physical limitations. Picking up a fully grown adult who is unable to cooperate safely is just not feasible for most people, and as her parents become more elderly even adjusting her position in the bed or moving her around to clean her would be impossible for them. Even with expensive hoists and other equipment, there are still some things you just can't do with a fully grown adult that you can do with a child. At the moment they can take her out regularly with the rest of the family to give her fresh air, new experiences, and a more fulfilling family life, they can move her from one room to another to give her a change of scene and allow her to be more involved with what is going on in the household, they can keep her clean and comfortable without it being a major undertaking involving several people or fancy, impersonal equipment, and perhaps most importantly of all, her parents can pick her up and give her a cuddle. Being able to pick her up and hug her sounds like such a trivial thing, but anyone who has cared for a young baby or a profoundly disabled person can tell you that this is one of the most important kinds of care you can provide. If this girl is forced to depend entirely on hoists and other machinery in order to be able to move around, rather than the loving arms of her parents, it will inevitably lead to greater distress & discomfort for her. Her quality of life will become worse and worse as she grows up, no matter how hard the parents try to provide the best possible care for her, and as her parents age and become less physically able themselves she will have to depend more on strangers or even be placed in institutional care. These parents also have other children to care for whose needs have to be considered; the more demanding the care of this little girl becomes, the less they will be able to give their other children. I would imagine that these parents already have to work incredibly hard to provide a good family life for all of their children - they certainly couldn't be accused of laziness in wanting to ensure that this doesn't become even more difficult!

Rights and dignity are a complex issue and there are rarely simple answers. To uphold one human right often means compromising on another. However, the best "rule of thumb" when evaluating these issues is to keep the focus on what will provide the best quality of life for the individual concerned. To stick rigidly to some general-purpose idea of rights that ignore what is actually best for that individual's wellbeing is illogical and often cruel. The right to self determination and bodily integrity are obviously important, but self determination becomes a meaningless concept when applied to someone with the mental capacity of a baby who will never progress beyond this (she would suffer & die if nobody made decisions for her!), and bodily integrity is secondary to happiness, physical comfort & life. If just leaving her body to do its own thing will cause her long term discomfort & distress, and will prevent her having a decent quality of life, is it morally better to just allow this to happen or to intervene?

I can understand the fear that cases like this represent the start of a "slippery slope", but if we keep in mind the essential individuality of every human being, disabled or otherwise, there is no need to fear that this decision would impinge on the dignity & rights of other disabled people. Decisions about the treatment of disabled people should always be taken on a case-by-case basis, although obviously we can learn important lessons from other relevant cases. The dangers arise when we start to treat "disabled people" as a discrete category of human being that ought to be treated differently to others - the reality is that we all have different needs, different abilities, different desires, and different life circumstances, and the way that the rest of society deals with us will differ from one individual to another. No matter what these differences are, the fundamental rights to happiness, dignity and life are sacrosanct, but the way these rights are best achieved will be different for each individual human being.