Home
♦ Contents
♦
Search
♦
Contact Us
About NCPD
♦
News
♦
Issues
♦
Access
♦
Resources
♦
How You Can Help
|
Home
♦ Contents
♦
Search
♦
Contact Us
|
|
Frayed At the Edges: The Intertwined Threads of Life and Disability By: Mary Jane
Owen* The intertwining threads of respect for life and the charge to look past obvious impairments to find the unique gifts and potential of those who live with disabilities have been tightly woven into the richly diverse fabric of our Church. Thus, as we prepare to celebrate life, we again recognize that the container of the human soul is wondrously vulnerable to assaults and traumas. The gift of life comes in fragile earthen vessels. Those who preach death often base their campaigns on society's fears of the handicaps of the young and the infirmities of the old. As we plan our defense of life, we need to utilize the refreshing insights that are unfolding within the community of disability concerns. Positive changes are taking place for all who live with disabilities in our land today. VOICES FROM THE FRAYED EDGES A young mother wept bitterly as she shared her story. "Both my husband and I believe in the sanctity of life. And when I learned my baby would be multiple handicapped, I never considered an abortion. We talked to our priest. He said our child would be a gift from God, but sometimes I'm not sure our parish really believes that. Adam is a loving little boy. So why doesn't the parish welcome him? Does our church really consider him a gift? He needs religious training just like any other child. The whole family feels unwelcome when the parish doesn't have room for Adam." A colleague called with news that medical scientists had discovered a way to eliminate the condition that had caused her hereditary blindness. Her enthusiasm faded as she explored the methods which would "cure" her disability. It seemed the "treatment" would have altered the genes which were destined to create her. The essence of her total being would have been manipulated, and this "cure" would have resulted in a manufactured version of herself. She wasn't sure what other qualities might also have been eliminated. She liked herself enough as God had created her not to take that risk. Another woman had been abandoned as a baby because the medical professionals judged the quality of her life as merely vegetative. After years in training and rehabilitation, she became a professional counselor. A television interviewer once asked her what possible joy she had experienced before she was discovered to be bright. Her reply was quick: "I loved the feel of clean crisp sheets against my skin." A man who grew up to become the director of the rehabilitation system that previously had judged him as too disabled to profit from their services remembers overhearing the diagnosis given his parents: "Your son will never have any quality of life. You should let him go. If he lives, he will undoubtedly merely exist in a vegetative state." And so as he rolls onto a stage to address an audience, he begins with a humorous greeting, "I come to address you as a carrot, a radish, or a cabbage, whichever you prefer." An elderly man in a retirement facility run by a church organization could afford and wished to purchase a motorized wheelchair. The administration refused to allow this purchase because, they reasoned, all the other elderly people, seeing such an example in their midst, would no longer be content with sedentary and easily managed activities. A successful young man with cerebral palsy told a discussion group at his parish: "I'm scared about some of the `do‑good' campaigns. One plans to wipe out all birth-related impairments within this decade. I have nightmares about the final days of their effort. I hear steps on the porch and a knock on the door. `We're the Mothers. You’re the very last one!' What plans do you think they have for me?" Following a stroke, an elderly parishioner required the use of a wheelchair. She worked hard at her therapy, planning to return to her many activities in her parish. However, when she asked about accessibility to the church building, she was told not to worry about such things. "Now that you are `homebound,' we'll bring you the Host." She asked a friend, "Who bound me?" Her decline into depression was rapid. Life just wasn't the same anymore. Another woman in Michigan told a group in the parish hall, "I was a little frightened to come here. After all, an attorney recently justified the assisted death of a patient on the basis that her life was over since she was blind and a wheelchair user. Well, I also can't see and I use a wheelchair. How many people have been infected with that destructive image? I'm angry and insulted." A young man had developed a neurological condition that was slowly limiting his motor abilities. He was hurt when a parish leader suggested he no longer come to services, since his condition made others uncomfortable. He left the church, as did his wife and children. An elderly parishioner told herself that all she needed to participate more fully in Mass was a little more light on the pages, and possibly a slightly larger print font. Early morning Mass had been an important event for her, but it was becoming hard to follow now and sometimes she got a little confused. Maybe she really was in the way now that she'd slowed down and had a little trouble hearing. She wouldn't bother them anymore. She could just pray her rosary alone. God would understand. INTERTWINED STEREOTYPES AND LIFE ISSUES The judgment "I'd rather be dead than disabled" is a painful reminder of the low value placed upon the lives of those who live with disabilities. And this troublesome refrain collides with our Catholic views about the sanctity of life. For those words can fuel the outmoded fears about unwanted dependency which are often associated with "infirmities" and move people to choose death over inconvenient life. Whether a given eugenics campaign endorses euthanasia, infanticide, or abortion, those less devoted to our belief in the sanctity of life are easy prey to each retelling of those ancient and no longer appropriate terrors of dependency which stalked the nightmares of our ancestors. The assaults upon life move forward because so few of us are knowledgeable or comfortable enough to speak out positively about the power of the powerless and the potential of those who are disabled. Unfortunately even the most pious among us may reinforce this negative image of disability by gratefully murmuring, “there but for the grace of God go I." Such statements would seem to imply that "those" less fortunate have somehow slipped outside the loving embrace of God's concern and grace. We currently face a new and insidious justification for the death of unborn babies, based on the need to relieve the pain and suffering of those who are "afflicted" with certain disabilities. While we may wish to promote research and development of new procedures that will prolong the productive lives of those who develop disabilities, many choose to ignore the moral implications of fetal tissue research experimentation. Here again, the fear of dependency and disability fuels the campaigns to promote death. As we anticipate the frailties of life, we could look for positive alternatives to death, creating environments that encourage greater interaction and care. Too often we fail to see our elders as having sufficient value to merit rehabilitation or independent living services. A utilitarian view of life, whether held by advocates of death or those with no strong position on life issues, prevents us from thinking creatively about options and reinforces negative views of disabilities at all stages of life. And when options and new experiences are blocked for those living with disabilities, depression often follows. Depressed individuals are less motivated to continue the struggles of life. The campaigns to kill these individuals can be justified when we, as members of the community, fail to recognize that situational and clinical depressions follow all life‑altering threats to our "status quo." If a non-disabled friend becomes suicidal, we rush them toward psychiatric assistance, and our psychiatrists are well prepared to deal with such "normal" patients. But when that situational depression is based upon loss of a function we consider essential, we join in the fear of our shared fragility and tend to reinforce the spiral toward greater depression. Either verbalized or unspoken, the phrase "I'd rather be dead than disabled" reinforces the impression that there is no better solution than death. Those of us with a commitment to the sanctity of life can benefit from a closer examination of the paradigms and strategies that have been developing within the community of disability concerns. A BIT OF RECENT HISTORY A few short decades ago, people who suffered from traumas that left them with limited functional abilities were not expected to live long. Infants with various deficiencies were not expected to survive to adulthood. Infections and other medical complications "mercifully" terminated the lives of those designated as "incurables" and "invalids." But skills learned in recent wars have brought fresh hope. Doctors have learned to salvage maimed bodies, and rehabilitation strategies have evolved that allow those who have lost one or more functions to find and practice alternative methods to accomplish essential tasks and master assorted skills. Specialists in both medical science and rehabilitation have made it possible to integrate children and adults with disabilities into a society that is often unprepared to welcome them. Ancient fears of dependency and loss of independence have been slow in fading in spite of increased evidence that individuals with disabilities may continue to be contributing and productive members of society. CONCEPTS THAT SUPPORT LIFE As people with disabilities searched for a common voice, they developed new concepts and paradigms that could better explain their sense of pride and self‑worth. They recognized the joy of living in spite of their assorted physiological glitches and determined to find ways to fulfill their potential. People with disabilities campaigned against being approached with pity, noting that it blocks the message of inclusion. Pity limits, shames, and never elevates the one toward whom it is directed, and it reinforces the fears and depressions that accompany the development of impairments. It is an unwanted projection of society's fear and discomfort. Appreciation of each individual's abilities, respectful compassion, and mutual recognition of our shared fragility must replace pity if we are to become united as people of God. An essential shift in societal attitudes occurred when the medical model, which sees those with impairments as "patients" whose needs must be met in "special" ways, was replaced by a political socioeconomic alternative in which the environment is conceptualized as a critical handicapping factor. When environments are created that welcome those with disabilities, there is less need to fear the inevitability of loss of function. This new view was an essential prelude to the drafting of the civil rights protections of the Americans with Disabilities Act. There was growing recognition that individuals with disabilities must be considered members of a minority, too long subjected to discrimination and segregation. Another life‑affirming tool grew from a new definition: "Disabilities" are the normal, expected, and anticipated outcome of the risks, strains, and stresses of the living process itself. Therefore, disability cannot be seen as solely an individual tragedy but instead becomes an expectation within any community. When universal design is used in creating environments that are broadly welcoming, disabilities lose their capacity to terrorize. The positive messages of our faith offer another conceptual shift. While the symbol of the cross is essential to our Catholic faith, we are the Easter people who look beyond Calvary to the sunrise of that glorious dawn when the heavy stone blocking our view of his power and grace was rolled away. The old association of disabilities with the suffering Christ can be expanded to include the miracles of rehabilitation as small reminders of his Resurrection. When the human spirit prevails regardless of the fragility of its earthen vessel, we glimpse our powerful relationship with the Body of Christ. A final conceptual view of disabilities may be particularly effective in countering the death campaigns. This view suggests human vulnerability and disabilities have some social benefits. THE MERIT OF OUR SHARED VULNERABILITY Our shared vulnerability, which is rooted in our gene codes, may be the catalyst that effectively counters our tendency toward alienation and selfish preoccupation, bringing us together in positive ways. Disabilities may well be the glue that can hold us together as community and Church with the knowledge that we need each other and our Lord. Without awareness of our mutual interdependence, we may mistake our temporary personal independence as the source of our power. Vulnerability reinforces behaviors that strengthen the threads of our social fabric, for it is through mutual aid that interaction between people is maintained. Without the evidence of our own weakness and fragility, many of us would ignore the message of unity. When Christ called upon us to seek the safety of the fold, the message was of our need, not our ability to thrive in isolation. Recognition of our interdependence weaves the strongest social fabric. Those of us, whether adults or children, who need others, who depend on interaction and love, serve as catalysts for unity in a society filled with estrangement and alienation. Those of us with such "imperfections" may, in fact, force relationships and community on a society in sore need of such therapy. Those who preach euthanasia must minimize our human interdependency or their campaigns will fail. They must remind us of our outrage that we grow older and more limited each day. Life's stresses can take little nibbles at our physiology but can't destroy our souls. Only our silent agreement that death really is preferable to life with a disability allows our sense of morality to shrivel and wither. Within this context, the frantic hope to avoid naturally occurring disabilities would appear to sprout from the same seeds that yield a caustic crop of alienation and disharmony. If we care only for ourselves, our children will not value themselves and will find their own destruction in our streets. If we don't care enough to find the resources to enable our weakest members to find ways to live productively, then we face our own dependent stagnation or death when we fail to fit the utilitarian standards we have embraced. The point where human life ceases to be valued and becomes a "thing" to be destroyed or used by others who deem themselves more "worthy" marks that point where morality prevails or dies. And when medical professionals or political systems encourage the "harvesting" of one life to nurture another or allow one life to be sacrificed for the convenience of another, we lose a sense of the uniqueness of each life. By devaluing any human life, we will have fostered the alienation which stalks our society. Surely these risks merit our most prayerful contemplation. At the same time, whenever anyone feels needed and essential to another, the threads of interaction are reinforced and the fabric that holds us together as Church and society is woven more richly and powerfully strengthened. *Mary Jane Owen, a disability advocate for two decades, was appointed in June 1991 to oversee the National Catholic Office for Persons with Disabilities' mission to implement the 1978 US. Catholic bishops' pastoral which calls for full inclusion of people with disabilities into the fabric of our society and our Church.
Produced by the NCCB Secretariat for Pro‑Life Activities through the Office for Publishing and Promotion Services, United Slates Catholic Conference, Washington, D.C.
|
Home ♦ Contents ♦ Search ♦ Contact Us ♦ Accessibility at This WebsiteAbout NCPD ♦ Guiding Principles ♦ News & Views ♦ Disability & Church ♦ Disability & Society ♦ Creating Access ♦ Resources ♦ How You Can Help
|
