Letters | Dealing with disability

A hard case

I have been a reader of Commonweal for over fifty years and this was the first time that an article angered and upset me. I refer to “Don’t Beatify Us” by Jo McGowan in the December 5, 2014, issue. The theme of the column is that families with disabled children need help from the community, which is true. At the center of the piece is Nancy Fitzmaurice, a British girl born with severe disabilities, who was raised for twelve years with much love by her family. Complications from an operation left her with severe and constant pain that her mother described as “horrific, agonizing, and fearful.” She was admitted to a London hospital noted for pediatric palliative care, but they were unable to relieve her pain. Nancy’s parents and doctors chose the only moral and loving option: to end her life of suffering. Because withholding food, which is legal under British law, would leave Nancy in agony for four more months, her mother received court permission to withhold water, allowing Nancy to die in two weeks. What angered me about McGowan’s column was her comment: “The fact remains that this is a story about a child killed by her own parents and doctors.” What an insensitive remark!

I am surprised and saddened that the editors would print such a remark. How do you think the parents, who did what was loving and moral for their daughter, would feel when publically accused of killing their daughter?

John Frazier
Fukushima City, Japan

 

The author replies

As the mother of a young woman with a severe disability, I appreciate John Frazier’s concern for Nancy’s parents. The last thing I want is to add to their anguish.

I disagree, however, that ending Nancy’s life was “the only moral and loving option” they had. The point of my piece was that sympathy for parents (not only Nancy’s) clouds our judgment. Unfortunately, no amount of linguistic sensitivity can disguise either what happened to their child or the role they played in it.

Disability and intractable pain bring us into the most complex moral geography anyone can imagine; when it involves a child who cannot make decisions for herself, the complexity only deepens.

There are many ways to think and talk about these things. Avoiding the reality of what is truly at stake should not be one of them. We need to be honest with ourselves and fully aware of the dangerous territory we are moving into with decisions like the one to starve Nancy Fitzmaurice to death.

Jo McGowan

 

Correction

In your November 14, 2014, issue (“Browsers Welcome”), Albert Wu mentioned St. Mark’s Bookshop in Manhattan, where I work, in his article about independent brick and mortar bookshops, and discussed how crowdfunding aided our move this past summer. Thank you for the mention, but a minor correction: Wu says we moved to Third Avenue. In fact, we moved from Third Avenue to Third Street (and Avenue A).

Janet Bruesselbach
New York, N.Y.

Published in the January 9, 2015 issue: 
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