Tuesday, September 09, 2008
At the IASSID conference in South Africa, I attended a session by a researcher from the UK. The woman was doing research on attitudes towards children with disabilities, and particularly toward their mothers in some of the more remote, tribal areas of Africa. Among the tribe she studied, there is the perception that a woman has a child with a disability because of something wrong she has done. She has "sinned" in some way and the result is that the spirits have given her a child with a disability as a punishment. The researchers, recognizing how important the relationship is between mother and child in the development of children with intellectual disabilities, wondered whether there could be a way within the tribal system that the perceived "sin" of the mother could be "forgiven" such that a better relationship might be fostered with the child and with the community for that matter. They facilitated mothers going through rituals with the tribal leaders/healers that cost lots of money and took many months, but in the end, the mothers were "forgiven" of their supposed "sin" that led to the birth of their child. This ritual resulted, according to the researchers, in better relationships between mother and child as the mother no longer felt the disdain of the society (she was "forgiven") nor her own guilt for something that she had been taught that she must have done (but probably had little idea of what it might be).
Lest you laugh off this account as you look at it through your western eyes, women, families in the West, in the US for goodness sakes often face the same kinds of perceptions as was evidenced in tribal Africa. Research indicates that families, in particular mothers, will question God at the birth of a child with a disability wondering "What did I do to deserve this?" The fact that this question is even typically in their mindset illustrates that it is a part of how our society thinks about disability and the birth of a child with a disability. Somehow this social construction seems somewhat universal. Unfortunately, it has at times also been reinforced by various societal groups, including to a greater or lesser extant, Christian churches. Because this notion is such a basic part of our psyche, and because the Bible does not support such a notion, we as Christians must go out of our way to fight such an understanding of disability. To paraphrase a colleague of mine, Dr. Jeff Mooney, if we really had a good understanding of what sin is, and sin truly was the cause of disability, then all of our children should be disabled.
There is a ministry of mercy that the church and Christians can play in the lives of families, particularly mothers and fathers of children with disabilities. That is, that as the opportunity arises we refute claims about a parent's sin being the reason for a disability. We don't provide some silly, syrupy notion of God looking down and choosing families to have a disabled child, however, we do support that disability is in some way a part of God's plan for human beings. The child with down's syndrome is not someone who somehow escaped God's notice and was born with an extra chromosome. In many ways, such children are part of God's plan for people.
Now obviously there are things a parent, particularly a mother can do, like drink excessively during pregnancy, that can lead to a disability in their child. What I am talking about, however, is the birth of a child with down's syndrome, for example and other similar disabilities. Not that we should criticize the mother of a child with fetal alcohol syndrome, but rather that the healing process in that mother's life is very different from that of a mother of a child with down's syndrome, for example.
Because disability is or has taken on such a negative perception, people assume there must be some form of evil behind it, and wrongly and unfortunately, the evil is usually placed a the feet of the mother. It is interesting to note, for example, that when autism was first described, its cause was said to be due to "icebox parents." Once again, it was believed that it was unloving parents who had children with autism. Nothing could be further from the truth, however, because of the notion once again of sin linked with disability, even 1940's researchers would make the connection between the two.
Another of the researchers at the IASSID conference was from Iceland. Interestingly, she noted that in Iceland the divorce rate among parents of children with disabilities was LESS than that of couples who did not have a disabled child. This is quite a statistic. With supports, parents can see the birth of a child with a disability in a totally different manner. Supports can be provided that may actually make the family unit stronger rather than weaker. I suspect a lot of this strength is related to the manner in which disability is perceived, or people are taught over time to perceive the birth of a child with a disability.
That is my prayer for the Christian church. I pray for the day that parents of children with disabilities are drawn to the church because of the support they will feel there. That the response to the birth of a child with a disability is not "I must have sinned" but "I need to go to a church where they will love, understand and support me." That people, Christian or otherwise, would intrinsically link disability and church. If we were really supporting people with disabilities and their families, the community witness would be irrefutable. It would also go a long way in refuting the socially constructed link between disability and sin.