Wilkat, Melba J. When Down Is Up. Life with a Down Syndrome Son. New York, Lincoln, Shanghai: iUniverse, 2005. 6 x 9. xiv + 148 pgs. 25 photographs. Paperback 0-595-34228-0. Cloth 0-595-67079-2. $13.95 US.

Reviewed by Boldizsár Fejérvári, Eötvös Loránd University (Budapest)

Melba J. Wilkat's When Down Is Up is the emotional biography of the author's son, John Albert Wilkat, the youngest of her four children, who was diagnosed with Down syndrome at birth and also experienced the symptoms of cerebral palsy in later life. Wilkat narrates her son's life–and, as the subtitle suggests, a large part of her own, too–in more or less chronological order, with a lyrical introduction, several verse "inserts," and a few documents to illustrate the progress John made, the life he led. The point she is making is clear and convincingly argued: Living one's life to the fullest cannot be a question of birth, health, or personal abilities–and yet her story demonstrates that one must constantly fight to have this basic truth accepted.

A great strength of this book is its personal touch matched with a good sense of proportion. It is affective but not overly sentimental (with the possible exception of Chapter 23, which comments on the lyrics of John's favorite pop songs); it sets out the boundaries of John's disabilities and illnesses without becoming entangled with technicalities; and the author's plain but sincere poems are so well arranged and so carefully selected that they never make the impression of being out of place. Indeed, these rhymes, alongside other textual quotations, contribute greatly to Wilkat's narrative becoming the "good read" that it is.

It is the same poems, letters, dialogues, and other little memories that reveal another important aspect of the biography; namely, that it is a means to cope with the loss caused by the passing away of the author's beloved son. Chapter 22 bears the telling title, "Grief Counseling," but the reader might have the impression that, to a notable extent, the entire book is motivated by Wilkat's efforts to accept her son's death, just as, against all odds, she had accepted him at his birth–a decision whose background is tactfully left undiscussed. Although the reader might gather that religious and moral motives played a vital role, the author carefully avoids even the suspicion of imposing any such consideration on her audience.

The motivation for writing this book may have been an urge to cope, but its purposes are more complex. Wilkat addresses her book primarily to parents who find themselves in a similar situation, but other readers may also come to revaluate some of their preconceptions about mentally and/or physically disabled people. For John's achievements in life–his wit, his love for life, and his almost infallible judgment of character–are quite contrary to what uninformed persons usually think of people with Down syndrome. So much so, that at certain points in his life he might even have "passed" for a "normal" person, as some of the events described in the book illustrate.

On a general level, however, the author shows that such "passing" is not necessarily an advantage. As Wilkat's comparison of Seagull School with some less fortunate attempts at teaching disabled children proves, the integration of "trainable" pupils into groups of non-disabled peers could cause more damage to both parties than it has benefits. The author proposes an ideal where education is graded on the basis of personal (dis)abilities, with suitable care and attention dedicated to each individual. While sketching out the development of past decades in this area, Wilkat also surveys how everyday usage has changed from the now condemnable adjective "Mongoloid" to the present-day, politically correct reference to "mentally disabled" or "handicapped" people. John's disability is at times treated on par with other "differences": that of religion or culture–as in the case of John's Jewish teacher–or race–as the anecdote of John's Black friend shows. These implicit connections are as controversial as they are inconclusive, quite rightly so. The most important thing is not just being different; it is making a difference oneself.

How far this book will succeed in making a difference remains to be seen. Its cover, unpretentious and modest, may not be attractive enough to all readers, and the same can be said about its typography, which might have benefited from a more elegant design and somewhat more scrupulous proofreading. The photographs illustrate the stages of John's life satisfactorily but the quality of reproduction leaves much to be desired. The publishers could consider whether a separate photograph section with more professional-looking prints might not improve the overall impact of subsequent editions.

Nonetheless, these critical remarks should by no means overshadow the great merits of the book. Melba J. Wilkat says all that can be said in her story, and leaves untold that which defies narration. Beside its moral message, and despite its formal imperfections, it is this understanding and tact that make When Down Is Up a valuable, rewarding, and commendable read.