A New Zealand girl born with developmental disabilities is unable to speak, walk or see. In an effort to make her life better, her family decided to stunt her growth and remove her uterus.
This is a difficult situation that puts the rights of a girl with significant disabilities against the practical realities of taking care of a person with severe developmental and physical challenges.
The girl’s parents worried that they would not be able to take care of her if she grew to adult size. There are clear ethical issues with stunting a person’s growth for non-therapeutic reasons and without consent. Her parents – and others who have done the same – argue that stunting their child’s growth is actually in her best interests. And practically speaking, on many levels, it may be. High needs adults with significant developmental disabilities can become bedridden (which can result in bed sores, infections and other complications). Staying small means parents are better able to move and care for their child.
According to proponents of the treatment, size reduction is a key factor in being able to keep a loved one living at home and participating in family life.
Those who have never been in their shoes probably cannot truly appreciate the challenges of caregiving, or that the desire to stunt children’s growth comes from a place of unconditional love. But do the good intentions and difficulties of caregiving justify infringing upon a person’s autonomy and bodily integrity? Do the benefits to the disabled child outweigh the risks of the treatment? Like most controversial issues, it depends who you ask.
This issue also begs the question, with adequate social and financial support would parents feel the need to stunt their children’s growth in order to provide proper care?
The decision was also made to remove the child’s womb. This is a restriction on her reproductive freedoms that would likely not be accepted in Canada. In the 1980s a mother asked the court for permission to consent to the sterilization of her very disabled daughter. The case went to the Supreme Court of Canada, which decided that “sterilization should never be authorized for non‑therapeutic purposes”.
It is not uncommon for parents to want to sterilize their children with severe developmental disabilities. Some parents fear their child would be traumatized and confused by menstrual discomfort, pregnancy, and labour. Concerns are also expressed about the risk of sexual assault if large breasts are allowed to develop, which is why some parents opt to remove early breast buds. Even without large breasts, women with disabilities are far more likely to be the victims of gender-based violence.
Parents also worry about becoming the primary caregivers of any unintended offspring. The latter argument is legally more problematic because, although it is a legitimate concern, it emphasizes the best interests of the parents (rather than the child). Sterilization (and birth control for that matter) also raises the issue of eugenics – the practice of using sterilization to change (those doing it might say “improve”) the genetic features of the population. Even if motivated by good intentions, sterilizing disabled persons can be a step down a slippery slope.
Where do we draw the line when it comes to acts of mercy? How far should we go in the name of love? You may recall the Robert Latimer case, where a loving father killed his disabled 12 year old daughter to end her suffering. He was convicted of second degree murder.
Parents considering medical treatments that would in some way limit their child’s autonomy or right to bodily freedom would be wise to seek legal advice before acting. And health professionals asked to perform such treatments should seek counsel from colleagues, in-house lawyers and ethicists prior to performing such procedures. There are no easy answers in these situations and much will depend on the legislation and precedents in each particular jurisdiction. Knee-jerk reactions should be avoided and a careful analysis of the law, and the best interests of the child, should be performed.
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