165 - The Apple Doll House: Lessons from the Handicapped

The Apple Doll House: Lessons from the Handicapped
By Diane M. Komp

"No, it was to shame the wise that God chose what is foolish by human reckoning, and to shame what is strong that he chose what is weak by human reckoning; those whom the world thinks common and contemptible are the ones that God has chosen those who are nothing at all to show up those who are everything."

(I Cor. 1:27,28 Jerusalem Bible).

THE APPLE DOLL HOUSE RESTAURANT IS closed now. The structure is used for other worthy purposes and it's former enterprises have been relocated to a more spacious restaurant with the opportunity for more retarded adults to be productively employed.¹ But my thoughts still revert to the colonial tea room that God used to open my heart and soften it.

Early in my medical career, all of the children with Down's syndrome ² that I met lived in, or were on their way to institutions. The medical credo of that era was that family life was disrupted by the presence of a severely retarded child .³ Pediatricians counseled parents to institutionalize "idiots" for the sake of the rest of the family.⁴

In the late 1970s, I moved to a new position and met an interesting situation. In a community with large, closely-knit families and effective

Diane M. Komp, M.D. is Professor of Pediatrics, Yale University School of Medicine, and Attending Physician at the Yale-New Haven Hospital. Her two previous articles, "Hearts Untroubled" and "Traveling Home with Jenny" (Oct. 1988 and Jan. 1990) have been much in demand. Dr. Komp is a deacon in the First Congregational Church, Guilford, Conn.

¹ Apple Doll House was a project of S.A.R.A.H. (Shoreline Association for the Retarded and Handicapped), Guilford, Conn.
² The syndrome was first described in 1866 by John Langdon Down, Medical Superintendent of the Earlswood Asylum for Idiots in Surrey, England, in an article entitled, Observations on an Ethnic Classification of Idiots. Influenced by Darwin, he theorized that the slanted eyes were a throwback to Mongolian origins. The term "Mongolian idiot" is inappropriate as well as offensive, and the term "Down's syndrome" is to be preferred.
³ An editorial in the American Journal of the Psychiatry (99:141, 1942) said, "The state of mind of the parents of an idiot may fairly become a subject of psychiatric concern ... fear of opinion even deters sometimes from placing a mentally deficient child in an institution when the interests of the child and family alike would best be served by such action."
⁴ Such advice was given to Dale Evans and Roy Rogers when their Down's daughter, Robin, was born in 1950. When Dale published her book, Angel Unaware (1953), she took the world by surprise and gave courage to other parents who chose to keep their retarded children in the bosom of the family.

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support organizations, most of my Down's patients were vibrant youngsters who lived at home. I was confronted by well informed families whose retarded children knew their personal worth.⁵ In a previous essay,⁶ I recounted the events surrounding the death of Donny,⁷ a Down's child with leukemia. Donny lived with leukemia for three of the most spiritually formative years of my life.

What I remember most about his first admission to our hospital was Donny's passionate desire not to be underestimated. We did not see the frustration and anger that surely must accompany chronic underestimation. We met a charming performer with years of experience playing to dense audiences.

His parents always did their best to help him reach his highest potential but there was the rest of the world to deal with. Ruth and Bob poured out their hearts to a child psychiatrist about issues surely too profound for their retarded son to comprehend.

As they talked to him, Donny stood to the side, feigning disinterest. His pretense was noted by the psychiatrist who asked, "Donny, do people ever underestimate you?"

Hand on hip, he shot back, "Doc, you'd better believe it!"

I

Apple Doll House was an important part of not being underestimated. It was a symbolic promise to Ruth and Bob that there was hope in adult life for their retarded son. Occupational training, work opportunities, and groups' homes are a reality in a loving and supportive community. Encounters in the clinic when Donny went into remission were enlivened with stories of Special Olympics, special education, and special events. Everything in this world that was new to me seemed special.

Ruth was one example of what was special. Born in Puerto Rico to a Baptist mother and Roman Catholic father, she attended services for both each Sunday as a child. Her own approach to religion combined the best of each, the rich symbolism of Catholicism and the Baptist emphasis on personal faith, It was very important to her that Donny's personal religious commitment be recognized.

She searched for a Christian church that would allow him to learn all about his Lord at his pace. When Donny's spiritual growth rate exceeded the piety pace of the "normal," she warned priests and pastors not to hold Donny back. The retarded child I met was more thoroughly Christian than I.

II

After Donny's death, Ruth went to work at the Apple Doll House supervising the kitchen and dining room staff. How many parents who lose a child have the privilege to go to work each day and see the same

⁵ Contrast F. Kennedy, "The Problem of Social Control of the Congenital Defective: Education, Sterilization, Euthanasia." American Journal of Psychiatry (99:13, 1942): "Good breeding begets good brains; with no good brains, there can be no good mind."
⁶ Komp, Diane: Hearts Untroubled, THEOLOGY TODAY, October 1988.
⁷ Names and minor details have been changed to protect privacy.

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beloved face?⁸ Seeing Down's syndrome people each day was a miraculous way to assuage the grief and retain the wonder of that small life, no longer part of hers. No manager could have loved her employees more than Ruth.

Mary Kate excelled as a waitress and was soon promoted to hostess. When I visited, she always served my table despite her exalted new job description. She led an active life outside of work, living in a group home with other adult Down's and competing in a variety of sport events.

It was Christmas time when I came for lunch with three guests. While we were contemplating the excellent alternatives on the menu, Mary Kate was in the corner quietly repeating, over and over again: "Croissant, croissant, croissant."

The menu was arranged by numbers to simplify things for the staff. One of my guests ordered by number, but Mary Kate was not about to have her rehearsal efforts wasted: "Would that be the ham and cheese croissant?"

My guest complimented her on her superb French pronunciation. She looked down demurely and said, "Thank you, but my Spanish is so much better than my French." She and her Spanish teacher treated us to a duet of Feliz Navidad.

Speech and language do not come easily for persons with Down's syndrome, and that represents one of the greatest sources of frustration for retarded and handicapped persons with the rest of the world. It takes real courage for many Down's to risk being understood in their native tongue, let alone foreign languages. Love such as Ruth's uses imagination to fuel courage.

The "clever" are handicapped in that they (we) lack imagination. One of my patients with severely impaired speech is in love. His sweetheart, who is deaf, taught him sign language, and she "hears" only the beautiful fluency of his hands. The Rev. Harold Wilke lacks the hands to execute signing but has the most talented toes in the United Church of Christ. Karl Menninger quotes Wilke: "I can't shake hands with you.... I never had hands.... I was expected by my parents to do everything my brothers did, and I learned alternative ways-toes instead of fingers."⁹

Linguists in California find that some Down's children with faulty speech are freed to express themselves quite poetically by the keyboard of a computer. A teenager named Christine chose to write about God

⁸ "There is something that touches one deeply when one encounters an individual to whom one can say mentally, 'I know you. I have seen you many times before I was and you will probably still be here in your innocent simplicity and dependency when everything else has changed and perhaps gone into a frenzy of chaotic complexity," Wolf Wolfensberger, The Prophetic Voice and Presence of Mentally Retarded People in the World Today, presentation to the Religious Subdivision of the American Association of Mental Deficiency at its 100th National Conference, Chicago, May 1976, and to the International Federation oflI'Arche, Chateauneuf, France, April 1978.
⁹ Forward to Harold Wilke Creating the Caring Congregation (1980). Dr. Wilke is director of The Healing Community, 139 Alworth Ave., White Plains, N. Y. 10606.

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and turned to the researcher to say, "He's gonna like this." I'm sure she's right about "I like God's finest whispers."¹⁰

In the early hours of the morning, Artie's brother died of cancer in the bedroom they shared. He packed his books and went to the curb to wait for the school bus. His parents wondered how in his simplicity he processed that loss. It was as though nothing unusual had happened that day.

In the months that followed, Artie was consumed with his own activities, preparing for the winter competition of the Special Olympics. Artie was truly amazing and the ski champion's neck was bowed under the many medals. Bursting with pride, he joined the other athletes for a press conference.

"This has been a very exciting day, Artie," said the sportscaster. "What were you thinking about when you crossed the finish line?"

Ordinarily, his speech is very difficult to understand but his response was clearly heard on national television: "My brother died this year."

"I'm sure he was an inspiration to you," replied the stunned sportscaster.

"Yes!" answered Artie.

Wolf Wolfensberger uses the term "speaking in tongues" for this phenomenon, when a person whose ordinary speech is unintelligible suddenly speaks clearly, revealing an important truth.¹¹ I've also had the opportunity to observe the "interpretation of tongues.¹²

When I visited the Rev. Bill Gaventa's program at the Monroe Country Developmental Center in Rochester, N.Y., I knew I would witness something unusual. Bill loves the developmentally disabled-really loves them. Several visiting family members told me why they came for his all-purpose Christian worship service every Sunday afternoon.

Many of the clients had no visitors and these faithful families "adopted" others in addition to their own family member. They came to love these others but despaired of ever understanding the inarticulate communication of some.

The visitors were amazed each Sunday in the worship service to hear Bill interact with them. Bill not only understood the most impaired speaker, but responded. It was clear to me and the visitors how affirmed Bill's special friends felt by God's special messenger who could interpret their "tongues."

What sustains people like Bill Gaventa or l'Arche founder Jean Vanier who minister day in and day out to the handicapped?"13 The director of a Christian rehabilitation center in East Germany explains, "Visitors ... often say, I thought that I would find the grave disabilities and hard lot of the children shattering. But that was not what shook me; it was to find how joyful these children are!' So they are already witnesses to Jesus Christ of whom we sing, 'In you there is joy, whatever

¹⁰ "The Poignant Thoughts of Down's Children are Given Voice, The New York Times, Dec. 22,1987, C, pp. 1
¹¹ Wolfensberger pp. 18- 19. "
¹² Cf. I Cor. 12:10.
¹³ Jean Vanier, Community and Growth. Our Pilgrimage Together (Griffin House, Toronto, 1979).

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the distress.' This unconscious witness also influences the staff and helps them in their arduous task."¹⁴

III

I had a phone call from a man who identified himself as a computer specialist. His teenage son with Down's syndrome had surgery for cancer, and they were seeking the right physician to coordinate his subsequent care. Roderick's whole life had been medically complicated by the Down's syndrome, and his parents could not believe that he could be treated like the average adult. So he used his own expertise to shop for the "right" oncologist. Through several computer-assisted programs, my name kept appearing.

"But who told you about my special interest in Down's syndrome?" I asked. I had never published anything on the subject.

"Then we really were 'sent' to you!" he replied. "I didn't even know that.

There were half a dozen reasons why your name kept coming up, and that wasn't even one of them."

Rodd's cancer was easily treated, but we kept in frequent touch because of mutual respect and unrivaled fun. He taught me how I, too, could be a "clown of God,"¹⁵ He would even agree to a barium enema if I curtsied properly and called him "Your Lordship." He is witty, active and proud and would dance me off my feet at his birthday parties if I didn't plead middle-age and suggest a younger partner. Praise the Lord for amazing Grace-she can dance all night. ¹⁶

He told me that Roderick was born in England after they left South Africa, heartsick about apartheid. One year, the entire family visited South Africa for six weeks and we met at Apple Doll House for luncheon after their return. All of the waiters and waitresses that day were adult Down's, and Rodd thought he was in heaven when he saw who was running the place.

Mary Kate came to take our orders, and as his Lordship perused the menu, he sneaked a glimpse of this wondrous creature out of the corner of his eye. As she glided away from the table with our orders, Rodd permitted himself a cautious sidewards glance then returned his attention to us.

He shook his head contemplatively and said, "Stunning woman!"

His mother shared with me their experiences in South Africa and their realization that apartheid applies to the handicapped as well as blacks and "coloureds."¹⁷ At no time did they see another person with

¹⁴ Heinrich Behra, "Work with the handicapped in the GDR," in Partners in Life-The handicapped and the Church, ed. Geiko Müller-Fahrenholza (World Council of Churches, Geneva, 1979).
¹⁵ Les petite bouffonnes du bon Dieu " (God's little clowns) is applied to Down's syndrome by Morris West in his wonderful novel, The Clowns of God (1981).
¹⁶ Rodd and Grace have been engaged for two years. Their parents believe that they are capable of firmer commitment to each other than the average American couple. If they sustain their current level of commitment, their parents have promised to support them in legalizing their union to permit them to live together as man and wife.
¹⁷ South African term for half-castes.

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Down's syndrome on the streets or any other obviously retarded individual.

In conversation with a pediatric nurse, they learned that in some hospitals, parents of "defective" children are told that their babies die and the children are then institutionalized without the parents' knowledge. Everywhere they went, people gawked at Rodd. He quickly learned that this was not a country where he could take his doctor out to a restaurant dancing and then dance with every other white woman in the place.

Mary Kate returned with our desserts and the check. As we were leaving the Apple Doll House, his mother asked, "Rodd, what do you think of this place?" He looked around him and said wistfully, "It's wonderful to see so many handicapped people."

Is it wonderful to see many handicapped people? The Rev. Wilke would have been excluded from the priesthood of ancient Israel because of his deformed arms: "For no one who has a blemish shall draw near, a man blind or lame, or one who has a mutilated face or a limb too long, or a man who has an injured foot or an injured hand, or a hunchback or a dwarf ... he shall not come near to offer the bread of his God" (Lev. 21:18-21).

Do you find it wonderful, or is: "your first impulse ... to run. This is too different. I can't handle it ... the people in this world [of the handicapped) are indeed the garbage, the scum, worthless?¹⁸ Psychiatrist Leo Kanner's words are as relevant today as half a century ago: "It seems that man's need for self-assurance has always prompted him to look down with contempt or contemptuous pity on those disadvantages or misfortunes he did not happen to share."¹⁹

It is all too easy to point a finger at South Africa. I see Rodd's experiences there as simply a larger-than-life version of what happens in America, even in our churches. We may not exclude the mentally and physically handicapped by policy, but the clever seem to be once again lacking in imagination.

What then is the Christian response to what is weak and foolish, common and contemptible by human reckoning? The church becomes the caring congregation when it examines its impulses and stops running. The body of Christ is a healing community when it uses a thousand tongues and fingers and toes to repeat God's finest whispers.

¹⁸ William Gaventa, So Near Yet so Far (an unpublished sermon).
¹⁹ Leo Kanner, "Exoneration of the Feebleminded," American Journal of Psychiatry (99:17, 1942).