Highlights

Designer disability?

Sep 2016    

In 2002, the Washington Post Magazine published a story of an American lesbian couple, Sharon Duchesneau and Candy McCullough – both of whom are deaf – who had deliberately chosen to have a deaf baby. A friend of theirs, with five generations of deafness in his family, donated his sperm.

The couple succeeded: their child Gauvin McCullough has only a very slight amount of hearing in one ear.

Duchesneau and McCullough are not the only couple that has chosen to have a child with a disability. In 2008, BBC News reported that Tomato Lichy and his partner Paula Garfield also tried to have a disabled baby through IVF.

A survey conducted by Baruch, Kaufman and Hudson in 2006 showed that couples who deliberately choose to have children with conditions commonly seen as disabilities are not as uncommon as one would imagine.

The highly-publicised case of the American lesbian couple cited above has ignited a fierce debate in the popular press as well as in academic journals on medical ethics across the globe.

The responses have been extremely polarised. On one end of the spectrum, there are those who strongly condemn the couple for deliberately bringing a disabled child into the world. On the other end are those who applaud them for exercising their right and autonomy.

Should people with inherited disabilities be allowed to select children with the genetic disposition to have similar disabilities?

The answer to this question is made more complex by recent discourse on disability.

There are some who argue that a distinction must be made between disability and impairment. Disability, they insist, is a social construct that has resulted in discrimination against people with physical impairments.

For example, the Union of the Physically Impaired Against Segregation (UPIAS) maintains that “it is society which disables physically impaired people”. It asserts: “Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.”

According to those who espouse such a view, deafness is merely a physical impairment, not a disability.

This approach to the issue is, in my view, misguided. While concern about discrimination against disabled people in our society is justified, the theory that all disabilities are social constructs that have served as the basis for discrimination must be called into question.

Once this theory is set aside, the sharp distinction that UPIAS makes between disability and impairment would appear contrived and even absurd. Certain forms of physical impairment are in fact serious disabilities.

Physical disability may be defined as a condition that limits and incapacitates a person in such a way that it potentially, if not in actuality, reduces his ability to flourish. Seen in this way, blindness and deafness are disabilities.

While it is true that discrimination and social insensitivity (for example, the failure to alter the built environment for people with disabilities) would considerably further compromise the quality of life of disabled people, it does not change the fact that their disability itself is an impediment to their flourishing.

Thus, if we were to place a blind person on deserted island where there is no discrimination, his blindness would still be an impediment to his wellbeing.

In the Gospels we find Jesus healing the blind, the deaf and the mute (Mark 8:22-25; Mark 7:31-37). This shows that disabilities are not part of God’s plan when he created human beings, but the result of sin of our first parents, Adam and Eve. The healing ministry of Jesus shows that salvation has to do with restoration of the wholeness that was compromised in the original Fall.

Whatever may be the philosophical rationale or emotional motivations, to deliberately bring a deaf child into the world is therefore surely at odds with God’s will and purpose for creation.

But what about those who wish to defend the autonomy of the couple – their freedom to choose?

In Christian ethics, freedom should always be exercised responsibly. The couple that exercises their right to deliberately bring a child with a disability into the world must ask themselves if they have acted responsibly. They must ask if they have acted in the best interest of their child, who will have to cope with this disability for the rest of his life.

 

 

Picture by vtupinamba/Bigstock.com

 

Dr Roland Chia –

is Chew Hock Hin Professor of Christian Doctrine at Trinity Theological College and Theological and Research Advisor for the ETHOS Institute™ for Public Christianity (http://ethosinstitute.sg/).

 

 

“Soundings” is a series of essays that, like the waves of a sonogram, explore issues in society, culture and the church in light of the Gospel and Christian understanding.

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