On the first Saturday in May 1961, a 20-year-old deaf woman was admitted to Spring Grove Hospital Center, a state mental institution here. She was the youngest of 14 children; her mother was dead, and when she became upset after her father's death, her family could think of no other place for her to go.
Today the woman, now 42, still lives in one of the locked, red-brick cottages at Spring Grove, but the treatment she has received is the subject of a lawsuit believed to be the first of its kind involving a deaf mentally ill patient. For 22 years, according to her lawyers, and even those who run this institution, the woman--identified in court papers only as Nancy Doe--has been "lost" in this vast, 200-acre complex of 940 patients.
Essentially, her lawyers contend, Nancy has existed in a place where no one made any attempt to communicate with her. She has had no hearing aid, they say, despite the fact that she had some ability to hear. She has had no contact with sign interpreters who could explain her problems or her needs to her doctors or other patients on her ward. The nature and extent of her illness are still unknown because of the hospital's lack of attention to her hearing problem. Nancy's world, for the last 22 years, has been one of isolation, locked doors and medication.
She is, hospital officials acknowledge, the victim of a tragedy that should never have occurred. Two weeks ago, Nancy, a thin woman with cropped brown hair, received a hearing aid, which everyone agrees she had needed for years. Her doctors, some of whom thought she was totally deaf, now say she may be hearing sound for the first time. And a few months ago, again apparently for the first time, a sign language instructor began to visit her and to teach staff how to communicate with her.
"We are not denying the facts that Nancy was denied treatment," says John Hamilton, supervisor of Spring Grove since 1973. "It was an unfortunate kind of tragedy that occurred."
Hamilton says the hospital is trying to rectify what happened to Nancy, but says that sometimes in an institution as huge as Spring Grove, patients--particularly those with physical handicaps--slip by unnoticed. He says he did not know Nancy.
It was to ensure that such neglect does not happen again that advocacy group lawyers filed suit over the summer on Nancy's behalf in U.S. District Court in Baltimore. The suit asks for $6 million in damages for Nancy and for the state to draw up a treatment plan for all mentally ill deaf patients.
Nancy is the patient's real first name, but to protect her privacy the suit is filed under the fictitious last name Doe. Her lawyers and doctors agreed to reveal her last name and allow a reporter to interview her only if the name were not used.
Interviews and a review of medical records indicate that no one really knows why Nancy was left alone in a world where no one could communicate with her. And, as in the case of many patients who live in mental institutions for a long time, the measure of Nancy's isolation is told, in part, by the very incompleteness of her record. Abandoned by family and treated by many doctors who have since left Spring Grove, the details of Nancy's life exist only in bits and pieces found in voluminous files of medical records. And even there, much of that record is a technical one, a medical dosage here, an outburst there.
Even a key question about when and why Nancy's hospitalization for paranoid schizophrenia was changed from voluntary to involuntary has not yet been determined by her lawyers. But what the records do show is that even as recently as 15 months ago an urgent request for better treatment from a psychologist from outside the institution who evaluated Nancy was not followed.
McCay Vernon, a psychologist from Laurel Center, a state clinic that treats mentally ill deaf people as out-patients, evaluated Nancy on May 27, 1982, and wrote in her medical chart: "There is no one there at Spring Grove who communicates with her in sign language and she is not involved in their therapeutic programs . . . . Records indicate that her care has been essentially custodial and at no time has she been seen by any professional knowledgeable about deaf people. . . . She apparently functions with little or no external intellectual or interpersonal stimulation all day long and has been doing this for the last 20 years. . . .
"In sum, Nancy is a prelingually deafened person who for the last 20 plus years has been hospitalized as mentally ill. She has received no psychotherapy treatment, only medications. She has not been grouped with other deaf patients nor has anybody experienced with deafness worked with her. The end result has been 20 years of severe deprivation."
Vernon, whose wife is deaf, recommended that Nancy's treatment be coordinated by the Laurel Center, Spring Grove and the Baltimore League for the Handicapped and that she receive sign language instruction. None of these recommendations, according to court documents, has been implemented.
Hamilton says he does not know why the Laurel Center offers were not followed up. The court record shows that on at least seven occasions beginning in March 1982, staff from the Laurel Center evaluated or offered to help Nancy. "It certainly should not have happened," he said. "There may have been many reasons why, but I do not know them."
A review of the records, in fact, indicates that Nancy's treatment began to change only after the suit was filed this summer.
State law requires that involuntarily committed patients undergo a recommitment hearing every six months, at which point treatment is also usually discussed, but the record shows that in Nancy's case the hearings have been meaningless. Interpreters have not been present to explain the proceedings and Nancy's lack of treatment only came to the attention of the Maryland Advocacy Unit for the Developmentally Disabled when, after a recommitment hearing in November 1982, some staff members complained to the hearing examiner that Nancy obviously had no idea that it was a proceeding to retain her involuntarily.
Around the same period, the psychiatrist then treating her, Leonard Flax, the father of two hearing-impaired sons, also began trying to obtain a hearing aid for Nancy. But even then, it really was not until eight months after the hearing--and 14 months after Vernon's urgent request--that changes in her treatment began to occur.
While Nancy's lawyers, including representatives from the National Association of the Deaf and the Maryland Advocacy Unit for the Developmentally Disabled, are encouraged by the recent changes in her treatment, they say the changes, for the most part, are too little too late.
Her experience, they say, evokes memories of a time when masses of deaf people were written off as mentally retarded or untreatable. That it took an alert hearing examiner, a Spring Grove psychiatrist with two deaf sons and a psychologist from another state institution with a deaf wife to bring pressure for change, her lawyers say, indicates the depth of indifference of hospital officials toward deaf patients.
"The travesty of it all is that even when they Spring Grove were told by other doctors that Nancy was being seriously deprived and there were offers made to help her, nothing was done," says Mark Charmatz, a lawyer with the National Association of the Deaf.
Nancy's condition was originally diagnosed as a paranoid schizophrenia, but her lawyers and doctors say it is not clear whether, in fact, she was suffering from this illness when she was admitted. The records only indicate she threw some type of "fit" after the death of her father on April 14, 1961. The records also do not indicate whether an interpreter was present during the initial examination.
Her lawyers and doctors agree that she does have some mental problems. Whether those problems were there when she was admitted or whether they have been compounded by the length of her stay, her medication and lack of communication is unclear.
A young woman when she entered the hospital in 1961, Nancy now has teeth yellowed with rot and has difficulty keeping herself clean. She communicates in short, disjointed phrases and spends most days drifting through the halls waiting for her 4 p.m. medication or 5 p.m. dinner.
On a recent afternoon, Nancy sat on the concrete steps in front of her cottage with an interpreter, a visitor and John Coffin, a legal researcher with the Maryland Advocacy Unit who has prepared most of Nancy's case.
Her legs crossed and her light blue shirt with a flouncy ruffle stained with coffee, Nancy was hungry and concerned that her visitors might delay her dinner. In fact, most of her conversation, conducted with half-formed sign language and hard-to-understand speech, revolved around food.
At one point, Nancy motioned for a reporter's notebook. "I want party. I want go Canteen. I want coffee. I want soda. I want go bowling. . . . I am sick eat you know."
It was difficult to tell whether she was responding to spoken questions or sign language, or some combination. Without a hearing aid, she has 90 percent loss of hearing in her left ear and 65 percent loss in her right. Sharon Jones, the psychiatrist now supervising her care, says it is not clear how much of the loss she has recouped in her right ear with the hearing aid, but she is hearing something.
For Nancy, recounting life before the hospital is difficult. What little she does say about her family, according to Coffin, concerns two brothers who also were born deaf and were mute. She says she misses them; they were the only people with whom she could talk. The hospital and lawyers say they do not know where they are.
State officials have asked for a dismissal of the monetary damages on the basis of sovereign immunity--the exemption of public officials from legal action--but they have not yet requested a dismissal of the claims of wrongdoing or demands that the state come up with a plan for treating mentally ill persons and one for Nancy. Nancy's lawyers say they want the hospital to come up with a plan that eventually could lead to Nancy's transfer to a halfway house.
At six minutes before dinnertime, Nancy rose and indicated she wanted to go back inside to eat. Coffin motioned her to sit down.
She made some sound and used frantic signing that Coffin says has improved vastly since the interpreter started visiting a month ago. Again she grabbed the notebook. She wrote her full name in a clear handwriting with blue ink. Coffin says when he first started seeing Nancy she could only write her first name.
A visitor then asked about her hearing. Coffin moved slightly to the left as Nancy communicated with the interpreter. "Nancy, can you hear me?" Coffin asked.
Nancy turned her head. "Battery low," she said.