Rita J. Simon, president Women's Freedom Network 4410 Massachusetts Avenue, N.W. Washington, D.C. 20016 Dear Ms. Simon,

I was sitting down to send a contribution to Women�s Freedom Network when I came across Cathy Young�s Boston Globe column on the Terri Schiavo case.

I have always appreciated WFN�s willingness to reject feminist dogma concerning the wickedness of men. But I do not see where sensible feminism is served by the doctrine of spousal supremacy lying at the heart of Judge Greer�s numerous findings in favor of Terri Schiavo�s husband de jure, Michael Schiavo.

The Independent Women�s Forum has posted a statement of protest concerning Michael Schiavo�s power to order his wife starved and dehydrated, and I am surprised and dismayed that there appears to be nothing of the kind available at WFN.

That said, this aspect of the case is not my foremost concern.

My foremost concern arises from my life as the mother of two children with serious disabilities (autism, in their case). Having now read countless professions of horror at Terri Schiavo�s severe disability, I have become vividly aware of how very short a step it is from feeling that one would not want to live in Ms. Schiavo�s condition to feeling certain that Ms. Schiavo does not want to live. Given that the normal reaction to disability, including severe disability, is not suicide; given that the normal reactionto disability is to adjust and, in time, express levels of well-being comparable to those of the non-disabled; given that health professionals routinely underestimate a patient�s ability to live well with severe disability, this is a dangerous assumption that is not supported by the available evidence.

I am now committed to doing what I can to prevent our country from adopting Ms. Young�s standard of judgment concerning the status of people with severe, brain-based disabilities, summed up in this line from her essay:

I do know that according to every credible source, there's no such person as Terri Schiavo anymore.

Ms. Young cannot possibly know this, and nor can any �credible source.� Worse yet, Ms. Young apparently sees a person said to be in a persistent vegetative state as not being a person at all.

Even more destructive is the fact that Ms. Young�s use of the phrase �credible source� in this context clearly excludes Ms. Schiavo�s parents, who say that there is such a person as Terri Schiavo. In Ms. Young�s view, it appears, the Schindlers are neither credible nor expert.

This flies in the face of standard practice and belief in the realm of special education and disability. It is axiomatic to parents as well as to teachers, therapists, and doctors that �the parent knows his child best.� In practice this is not taken to mean that the parent is always right, but that credentialed experts can in fact be wrong, and that parents possess special knowledge credentialed experts do not. It is also taken to mean that when there is a conflict of opinion between credentialed experts and parents, experts will often feel motivated to seek a way to accommodate the parents� view. Frequently, when the credentialed expert and the parent cannot reach agreement, it is the parent�s opinion that prevails.

Also troubling is the fact that Ms. Young�s standard of judgment excludes core Judeo-Christian religious doctrine as a source of credible expertise. This is a mistake. Leaving aside the fact that the comfort human beings derive from faith should be supported by rational people, not dismissed, traditional religions are moral philosophies that have been created, elaborated, and revised over many centuries. If Ms. Young were to investigate what religion has to say about end of life issues, disability, and family authority, she would find that it is far more subtle and complex than the simple language of �breathing corpse,� �liquefied cortex,� �sad shell� and the like that our modern-day �bioethicists� have produced.

On yet another front, it strikes me that Ms. Young�s repeated invocation of expertise and authority is inconsistent with the philosophy of Women�s Freedom Network, which I take to be a common-sense libertarianism brought to bear upon women�s issues. Perhaps I misunderstand the mission, but I fail to see how unquestioning respect for �credible sources,� �doctors,� �court appointed guardians,� and �staunch conservatives� such as Dr. Elizabeth Whelan comports with small-l libertarianism. Libertarianism of any stripe, if it is to mean anything at all, must mean that we do not hand over the most profound and personal issues of life and death to external authorities no matter how many credentials they possess.

Finally, Ms. Young�s attitude is simply cruel�or, rather, indifferent to cruelty. I don�t know whether Terri Schiavo is suffering as she starves and dehydrates, though I am afraid that she is, and I defy any physician to say, for a fact, that she is not. (As to that, let me add that I love doctors as individuals and as a class; they�ve given my oldest son his life. Doctors have been quiet heroes in our family�s struggles. But a doctor is the last person on earth I would trust to tell me whether a medical procedure is going to hurt!)

As I say, I don�t know that Ms. Schiavo is suffering as the result of her �dying process.� But I do know that her parents and siblings are suffering acutely. They are experiencing anguish. Of this, Ms. Young has precisely nothing to say.

How is the starvation and dehydration of Terri Schiavo at the behest of a man who is a husband in name only good for women?

How is it good for freedom?

And how is chiming in on the side of credible experts and other authorities good for WFN?

I have always liked Ms. Young and her work. A few years ago we exchanged a number of calls and emails about the issue of boys and school, if I�m remembering correctly.

And I would like to be involved with Women�s Freedom Network.

So I am hopeful that WFN will take time to consider the issues raised by Terri Schiavo�s public starvation and dehydration in the absence of a living will, and against her family�s wishes. I am hopeful, too, that WFN will move
beyond the testimony of credible experts. Credible experts cannot tell us what to do in cases like Ms. Schiavo�s. Peer-reviewed studies have found the rate of misdiagnosis of persistent vegetative states to be as high as 43%,[1] <#_ftn1> far too sketchy a record to justify a decision to deprive a human being of food and water.

I�m enclosing a handful of relevant articles, including some that forcefully argue what has come to be called the �pro-tube� case. I would be happy and grateful to discuss the issue with members of your board and other interested parties.

Sincerely,

Catherine Johnson, Ph.D.
Coauthor, Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior

[1] <#_ftnref1> Tresch et al (8) found that 18% of long term patients in nursing homes in the USA, diagnosed, as being in the Vegetative State were able to communicate. Nancy Childs et al (9) in found that 37% of patients admitted to her rehabilitation unit with a diagnosis of the vegetative state were aware. Research at the Royal Hospital for Neuro-disability by Andrews et al (10) found that 43% of patients admitted with a diagnosis of VS for longer than 6 months were misdiagnosed, including several patients who had been thought to be vegetative for several years.
Helen GILL, MD, Fellow of Low Awareness States, Institute of Complex Disabilities, Royal Hospital for Neuro - disability, London, UK.

Andrews K, Murphy, Munday R, Littlewood C. Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit. British Medical Journal 1996; 313: 13-6