Love Never Gives Up...

"It's hard to feel sympathetic towards disabled patients who have always had a borderline existence. I think it is important to realize that treating all disabled people as equal -with equal rights and responsibilities is absurd....There are few disabled people who can be held up as good role models either in the areas of business, education or recreation. This is especially true for disabling disabilities that have some measure of disfigurement included." (1)

No, this is not taken from some 19th century bigot. These are the words of a psychologist practicing in one of the world's foremost rehabilitation hospitals. Unfortunately, it reflects the attitude of many people - and it would be applied very specifically to those commonly labeled "retarded". In a recent protest against the establishing of a group home in a suburban neighborhood, residents complained "these people can do nothing for us. They will ruin our neighborhood."

I witnessed a radical and inspiring opposite mentality this summer: 200 men and women from all parts of the U.S. and Canada proclaiming mentally disabled people as equal - with equal rights and responsibilities - the worth of these persons as unique, if different role models - and persons who have enhanced their humanity despite the anguish and frustration often experienced. This was the annual conference of the National Apostolate With Mentally Retarded Persons (NAMRP).

They know whereof they speak. They are the parents, family members and specialists who live with and work with those developmentally disabled. They not only possess the knowledge and expertise but have the lived experience. They are in the vanguard of those in recent history who have alerted government officials and society at large on the worth and the needs of those who have been ostracized for centuries. They have promoted special education, decent care, and assurance of civil rights.

I was awed and privileged in witnessing and being a part of this group, if only for a short time. I can better describe it as that body of which Paul speaks: "If one part of the body suffers, all the other parts suffer with it; if one part is praised, all the other parts share its happiness. All of you are Christ's body, and each one is a part of it...love never gives up; and its faith, hope and patience never fail...Love is eternal." (1 Cor.12,20-27)

Let me give you some samples of their love taken from my scribbled notes as I listened to their public statements and what they said in private conversations.

Charley, an elderly, self-effacing gentleman, is waging a campaign for what he calls a new kind of service for adults who are mentally retarded. It is basically moving in with THEM rather than moving THEM out.

Charley and his wife have two daughters, ages 36 and 32 who were born with PKU (phenylketonuria), a rare disease which causes mental and physical disability. When these daughters were born, not much was known about PKU, and even less assistance was given to the parents. That led Charley into a life-long struggle advocating on behalf of all those with such disabilities and their families. He had several notable successes, but now, as he put it: "I'm yelling out for a new kind of service! I want to keep my daughters in their home. My wife and I are aging. We have provided a genuine family life for them. Group homes and respite programs are okay, but are not near enough. Our oldest daughter must still use diapers and be spoon fed. Her younger sister has some musical talent, as you will witness when she sings at the banquet tonight. When you see her so nicely dressed, and listen to her singing, you will have no idea of the time and effort my wife will have spent in preparing her for this evening.

"Each day this daughter gets up at 5 A.M. My wife gets up shortly after that to assist her in getting ready to get the bus to Goodwill Industries where she works. After that, Mother spends a good part of the morning dressing and feeding our other daughter.

"There is a large percentage of disabled persons who cannot take care of their own needs but who have happy lives being cared for in their own homes. Today they are living longer, as is the whole population, and the parents, like us, are growing much older and need help.

"I want my daughters to continue to live in their home. We must reach the hierarchy, clergy, legislators, etc. to provide the teamwork and money to give parents like us the necessary help. Think of what that would mean in providing a home environment, a neighborhood/parish community of awareness and concern. This would keep such disabled persons out of institutions and save huge amounts of taxpayers' money.

"When I speak like this, people advise me that I should be present more at various meetings and social events to get my message across. What many do not realize is that those of us in such situations are so busy at home, taking care of our own household needs that we have precious little time to get a-round. That's why you don't see much of people like us. We need help to get the word out."

Marge, a young woman who is a Special Education teacher, began her remarks saying- "Our lives change when we get close. It is then that we experience the giftedness of someone disabled." This was in reference to her younger sister, Sarah, who is mentally retarded.

Marge described the terrible anguish of her parents and the other children -eight, I believe - when Sarah was born. "But," she added, "our anguish turned to great joy as we discovered the special gifts she brought us." Marge attributed this, with emphasis, to the fact that Sarah was treated like everyone else and given the chance to be just like everyone else in the family. As an example, she described how all the children in the family did their homework together. When Sarah was allowed to join the group, she, Sarah, was ecstatic, with the result that everyone else enjoyed their homework better and had this increased sense of closeness.

She then told of a quandary the family found itself in when one of the sisters announced that she was going to get married. All of the other sisters were going to be bridesmaids, but there was a question about whether Sarah should be one also. After debating it, they decided yes. Sarah got her dress, participated without incident, and when the celebration was over and she was able to hang her dress in the closet with all those of her sisters, she was 'born again'. This climaxed her sense of closeness and belonging.

Betty, a middle-aged mother, spoke of the problems of the attitudinal barriers in society which are harmful for everyone. Specifically, the attitude that the worth and value of someone is how they look, or what they achieve, and particularly, what they earn. As a result of this mentality, handicapped persons, particularly those mentally impaired are considered as having little or no value.

Betty went on to describe the pain felt in her family when her son Paul was diagnosed as mentally retarded. But then, as time went on, there was this great growth in everyone in the family. "All of our family have come to recognize the value of one who is not able to achieve, or earn according to society's norms."

This was reminiscent of comments made by Dr. Stanley Hauerwas, a renowned ethics professor who spoke at our Stauros Congress in Chicago in 1983. He talked about a film, produced with all good intentions, on preventing retardation, but pointed out the negative impressions it conveyed. The film depicts a husband and wife looking very sadly into a crib. Alternately, each one looks into the camera and Bays: "Don't let this happen to you. Our child was born retarded. He will never play the way other children play...never go to school with other children...never have an independent existence...Our lives have been ruined!" (2)

From the experience of the NAMRP members, the fact is that most of their children DO play as other children play...DO go to school with other children, albeit learn in different ways, and DO have some modes of independent existence. All of which depends upon how society allows and assists in this.

The fact is that no one of us, able--bodied and able--minded (all with limitations), has a completely independent existence. We are all needy and dependent from birth to grave. In Chicago, when I have visited the Misericordia Homes for developmentally disabled persons, I am so impressed with the competency, joy and enthusiasm of the staff. I am sure that this is 'dependent' upon the relationship with those they serve.

The setting for this annual conference was particularly significant. It was held at Cardinal Stritch College in Milwaukee. This is a companion--institute to the world famous St. Coletta's School in Jefferson, Wisconsin. This latter institution has received considerable attention because Rosemary Kennedy, the mentally retarded sister of President Kennedy, has spent most of her life there. But St. Coletta's is better known world--wide by the professionals in the field of Developmental Disabilities for its pioneering work in this field, and its continued research in education, socialization, job training and fostering of independent living.

The very roots of the NAMRP are deep within these two institutions. A large number of the religious and lay professionals at this conference received their training at St. Coletta's and Stritch.

The long history and spirit of St Coletta's is a moving story of love. A Father Meyer in 1904 asked the Superior of the Sisters of St Francis to open a school for mentally handicapped children, pleading that "while it is a noble work to educate the mentally alert, it is greater still to awaken dormant minds." The Superior, Sr. Mary Thecla, said she would if the Sisters were willing. To her surprise, every single one volunteered. Thus, St. Coletta's was born. In the parlance of that era, the school was named "St. Coletta's Institute for Backward Youth." Sr. Mary Hegeman, in her book "Developmental Disability" humorously writes about this title: "Later some of the residents protested that they don't walk backwards. Thus, 'St. Coletta's School for Exceptional Children' emerged when the school assumed a new title in 1931." (3)

We bussed out to the rolling hills St. Coletta's for a day, learned about and visited all the facilities, ranging from the school programs, senior citizen accommodations, huge farm, workshops, etc. In the interaction with the staff members and many of the 500 residents, I was overwhelmed by the competency, joy and beauty which permeated this huge institution. Institution is the wrong word. It is a true 'City of God'. I remembered the words of the Book of Revelation "Now God's home is with his people. He will live with them and they shall be his people. He will wipe away all tears from their eyes....The old things have disappeared." (Rev .21,3-4)

In that visit to St Coletta's we all were showered with smiles, hugs and handshakes. The affectionate nature of so many retarded persons is well known. Here at Coletta's that affection is respected, guided and properly enhanced.

While rejoicing in this unique setting, I was also nagged by a certain sadness - sadness over the spectres of those mentally disabled who have no family support or families with no means to provide an environment similar to St. Coletta's. We must continue to think of those on the streets or warehoused in public institutions, so constantly subject to physical, social and sexual abuse. Their very beautiful simplicity makes them so vulnerable.

To quote Stanley Hauerwas again-"They do not try to hide their needs....Even more, they do not evidence the proper shame for being so. They simply assume that they are what they are, and they need to provide no justification for being such. It is almost as if they have been given a natural grace to be free from the regret most of us feel for our neediness....

"How we as Christians should respond to those who are disabled?....Quite simply, the challenge of learning to know, be with, and love God. God's face is the face of the one mentally impaired, his body is the body of the one mentally impaired, his being is that of the one mentally impaired. For the God we Christians must learn to worship is not a god of self-sufficient power, a god whose self--possession is such that he needs no one; rather he is a God who needs a people, who needs a Son. Absoluteness of being or power is not a work of the God we have come to know through the Cross of Christ." (4)

References

1. The Disability Rag, (July 1985 Issue), Box 145, Louisville KY 40201
2. Hauerwas, Dr. Stanley "Marginalizing The Retarded", THE DEPRIVED, THE DISABLED FULLNESS OF LIFE, (Ed. Flavian Dougherty), M. Glazier Pub., Wilmington, DE 1984
3. Hegeman, Sr. Mary DEVELOPMENTAL DISABILITY, Paulist Press, NY 1984
4. Hauerwas, Dr. Stanley "Marginalizing The Retarded", THE DEPRIVED, THE DISABLED FULLNESS OF LIFE, (Ed. Flavian Dougherty), M. Glazier Pub., Wilmington, DE 1984.