'You're starting to stutter. Try to stop immediately'

十一月 11, 2005

More than 60 years ago, a theory on speech was tested on orphans. The evidence that was gathered is now being studied by lawyers, not scientists. Stephen Phillips reports

In January 1939, a 22-year-old postgraduate, Mary Tudor, arrived at the Soldiers and Sailors Orphans' Home in Davenport, Iowa, in the US.

Under the direction of Wendell Johnson, an eminent University of Iowa speech pathologist, she picked 22 children. The orphans were to take part in a series of experiments. What has since been dubbed the "monster study" had begun.

The experiments were designed to explore how stuttering affects people and how it might be alleviated. But it is one statement in particular in Tudor's masters dissertation that has cast the study into moral opprobrium and made it the subject of a multimillion-dollar lawsuit:

"Will labelling a person previously regarded as a normal speaker 'a stutterer' have any effect on his fluency?" This was the experiment reserved for six of the five to sixteen-year-old orphans who had no speech impediment when the research began.

For decades, Tudor's unpublished thesis lay in the University of Iowa's library, unknown beyond a small circle of specialists. Now it is exhibit A in an unprecedented legal case that charges that the study crossed an ethical line and left its unwitting participants - who learnt its true nature only after a US newspaper expose in 2001 - psychologically scarred.

The proceedings threaten the posthumous reputation of Johnson, an intellectual giant who helped make Iowa world-renowned for speech research and whose name adorns the university's Speech and Hearing Centre.

Details of the four-month experiment first surfaced in a 1988 journal article written by a researcher from Marquette University in the US.

Franklin Silverman, one of Johnson's former students who died in 2003, claimed the study was the dark empirical secret behind Johnson's signature diagnosogenic theory of stuttering. Silverman wrote in the Journal of Fluency Disorders that researchers declined to "disseminate" its findings for fear the study might invite comparisons with Nazi experiments on human guinea pigs.

Leading researchers today defend Johnson. They eschew suggestions of a cover-up, contending it was merely a flawed study deservedly consigned to obscurity. The experiment was a well-intentioned if misguided attempt to get to the root of a chronic disorder that affects 800,000 Britons and that crippled the speech of Johnson himself. They claim it must be judged as an unfortunate creature of its time rather than by contemporary standards.

For two years the case has been locked in legal stalemate. But a landmark ruling last month overturned the university's claim of legal immunity, clearing the lawsuit to proceed pending a last-ditch appeal.

Tudor's efforts to convince the children they suffered from speech defects that could mushroom into stuttering began with the following words: "The staff has come to the conclusion that you have a great deal of trouble with your speech. The type of interruptions which you have are very undesirable.

These interruptions indicate stuttering. You may have the symptoms of a child who is beginning to stutter. In fact you are beginning to stutter.

You must try to stop yourself immediately... Do anything to keep from stuttering... Don't ever speak unless you can do it right. Watch your speech every minute... whatever you do, speak fluently and avoid any interruptions whatsoever in your speech."

Orphanage employees were told to reinforce the message to the children.

"Watch their speech all of the time very carefully," staff were instructed.

"Don't allow them to speak unless they can say it right. They should be made very conscious of their speech, and also they should be given opportunities to talk so that their mistakes can be pointed out to them."

Tudor's thesis describes how the subjects, under this relentless verbal battery, became reticent, tongue-tied, monosyllabic, self-conscious and withdrawn.

She wrote that one girl's "speech had, in increasing number, repetitions, prolongations and interjections". Another "developed mannerisms characteristic of some stutterers, such as 'snapping' her fingers to 'get a word out'". Others clammed up. One boy's school marks became "markedly lower". "All of the children... showed overt behavioural changes in the course of the experiment that were in the direction of the types of inhibitive, sensitive, embarrassed reactions shown by many adult stutterers," Tudor concluded.

Following the study's completion, orphanage staff allegedly flagged up concerns about lingering speech problems among the children and Tudor returned to the orphanage at least three times to try to undo any ill-effects. "I didn't find them quite as free from the effects of the therapy I had inflicted upon them last year as I had hoped," Tudor wrote to Johnson in April 1940. "Case numbers 13 and 16 are the only ones I believe we need be concerned about and I believe that in time they too will recover, but we certainly made a definite impression on them."

The children never fully recovered, allege lawyers for the surviving three subjects and the estates of those deceased. "There were lifelong effects and similarities that all these plaintiffs experienced as a result of this," says Evan Douthit, a lawyer who represents Kathryn Meacham, 73, and Hazel Dornbush, 82. "They were left with the personal perspective that they were less than other kids," says Curt Krull, a lawyer representing Mary Nixon, 79. "By and large the lifestyle they led was the product of their self-esteem. Mary spent her life in the background."

Guy Cook, the lawyer representing Tudor - now Mary Tudor-Jacobs, a pensioner living in California - says the case discounts the trauma of growing up in a depression-era institution. It was no bed of roses, he points out. The study represented "an extremely narrow slice of their lives that they alleged impacted on everything", he says.

Douthit counters that Tudor's thesis provides an incriminating paper trail.

"It shows before and after - kids described as confident and outgoing by the end had changed."

But experts say the experiment must be placed in context. The study represents a "clear-cut case of abuse of vulnerable subjects", says Arthur Caplan, professor of bioethics at the University of Pennsylvania. "These are orphans who would be used precisely because of their vulnerability to test out these theories. Why study kids in an orphanage rather than telling (wealthy) parents to bring their children in for a study? I can guess they thought it wasn't something parents would (consent to) - it was too risky and nasty to try on anyone other than institutionalised children."

But there's the knotty issue of "ethno-presentism", adds Caplan - "the dilemma of trying to assess what took place years ago from today's standpoint. This experiment is ethically outrageous by current standards, but at the time many American and European studies were done in institutions".

In the 1950s, demented terminally ill patients at the Jewish Chronic Diseases Hospital in Brooklyn were injected with cancer cells to see how they multiplied. In the 1960s, mentally disabled children at New York's Willowbrook State School were infected with hepatitis to test treatments.

In the notorious Tuskegee Syphilis Study, carried out from 1932 to 1972, US government officials gave poor black men placebos instead of effective remedies to test the course of untreated syphilis. Revelations about such studies led to the passage of stricter protocols governing human research subjects in 1977, enshrining the principle of informed consent.

Nicoline Ambrose, associate professor of speech and hearing science and director of the stuttering research project at the University of Illinois, noted that the orphanage would have offered Iowa researchers a controllable residential setting. "There's a big misunderstanding that the intention of the study was to make people stutter," she adds. "Based on the documents, the intention was to see if they could monkey with their fluency, not make them stutterers."

Other mythology growing up around the study includes the suggestion that it proves diagnosogenic theory. Johnson held that drawing attention to a child's speech problems or branding them as a stutterer stigmatises them, exacerbating their condition and in turn provoking a further adverse reaction - in essence turning diagnosis into a self-fulfilling prophecy.

The theory held sway during the 1950s and 1960s, before being overtaken by the discovery of genetic causes and other environmental factors in stuttering.

In fact, the study debunks the theory by signally failing to prove its proposition that people can be conditioned to explicitly stammer, says Ambrose. Despite Tudor's clinical observations, just two subjects displayed reduced vocal fluency at the end of the experiments, according to measurements taken by fellow graduate students. The vocal fluency of another two remained constant and two saw theirs improve.

Ultimately, the experiment was hopelessly compromised by methodological and design flaws, frustrating efforts to draw meaningful scientific conclusions, say Ambrose and University of Pittsburgh associate communication science professor J. Scott Yaruss, a director of America's National Stuttering Association.

The incipient stuttering identified by Tudor may be the natural flustered reaction anyone might show subjected to the verbal haranguing the children faced, Yaruss suggests. The "lingering effects" suffered by the subjects were "social anxiety, disfluency in speech and lack of confidence", he suspects. "There's no doubt these people experienced harm. Whether you call it stuttering or something else - that's the scientific question."



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