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THE RICH TAPESTRY OF LIFE AND DISABILITY

Mary Jane Owen, TOP, MSW

Our dedication to the value of every human life is sometimes compromised when we think of the challenges of our shared vulnerabilities and the frailty of our bodies.  On one level we are aware that it is important to look beyond our fears and dread about our own impending fragility to the unique gifts and potential of those who live with disabilities but their challenges remind us of our fear of losing control, growing dependency and our eventual death.

For three decades I have been a participant observer of that reality, struggling to make sense of the foolishness of God’s wisdom in placing our precious souls into bodies which are so vulnerable to various impairments.   

Our contemporary society’s efforts to bypass that destiny by any means without regard to moral and ethical implications and our attempts to control life and death through assorted illicit strategies tends to confirm what the popular media tells us: We should be striving to find the elusive Fountain of Youth and thus avoid bodily imperfections.  Of course we fail.

However, constant reminders of how “dreadful” it is to be dependent on another or not in control of all functions reinforce a tendency to minimize the gifts which can be shared by our “flawed” brothers and sisters.

            In Evangelium Vitae we read:

….There exists in contemporary culture a certain Promethean attitude which leads people to think that they can control life and death by taking the decisions about them into their own hands. . . .  Thus it is proposed to eliminate malformed babies, the severely handicapped, the disabled, the elderly . . . and the terminally ill. 1

 John Paul II has even called the results of this attitude “a war of the powerful against the weak” and characterized this tendency a “conspiracy against life.” 2

People with disabilities have grown increasingly aware of this “conspiracy” and within the secular world Not Dead Yet, a group of street-wise and assertive self advocates have been more effective than many pro-life leaders in confirming the necessity of Dr. Kevorkian’s incarceration, in confronting the international organizations involved in promoting “compassion in dying,” in challenging the odious views of Princeton’s Peter Singer, who asserts that a baby pig has more potential for a productive life than a disabled child, and in confirming by their personal experiences that life with a disability is to be lived, not discarded because of prejudice or outmoded stereotypes. 

Members of this loosely organized coalition are affirming their lives have value and that they must be considered as a meaningful part of their communities.  Their battle cry, “Nothing about us without us!”

We Catholics have a long history of caring for those “handicapped” by sensory, physical and cognitive disabilities in a world which has only recently become aware of the necessity of creating environments which provide meaningful access and inclusion for the rich diversity to be found in our differing abilities.  Our bishops in 1999 provided us with words that inspire hope but are too often not matched by our actions. 

“Our defense of life and rejection of the culture of death require that we acknowledge the dignity and positive contributions of our brothers and sisters with disabilities. We unequivocally oppose negative attitudes toward disability that often lead to abortion, medical rationing, and euthanasia. . . . .   We must recognize and appreciate the contributions that persons with disabilities can make to the Church’s spiritual life. . . ” 3

Why, with such encouraging words to guide our actions, does the National Catholic Partnership on Disability hear so many stories of frustration?  These painful entreaties cover every disability.  Folks are asking why grocery stores and movie theaters seem more welcoming than their parish; why museums have large print guidebooks for those with visual impairments and libraries have instructional materials easily understood by those with cognitive disabilities but such resources are missing as they seek to worship in their parishes.

 Why deaf students find real time captioning available in their classes but rarely at national gatherings of young Catholics; why there is no room for their youngsters with various disabilities in the parish schools which the older children attended; why catechists are unable to teach children who have shown progress in public school.

We also hear words of anger through painful tears.  Why did that special Eucharistic minister not only refuse the Host but suggest an older woman must be a pawn of the devil because of her palsy and why must one family give up trying to “sign” Mass for their deaf child or another join a Protestant church to find any concern for a daughter with celiac sprue for whom the wheat wafer is like rat poison? 

A young couple refused the sacrament of marriage because he was paralyzed defending his country is married elsewhere and appears to be lost to the Church.  For the most part such “cases” do not seek easy solutions.  They want to hear a measure of concern; an expression of welcome in spite of the difficult situations they bring to our attention.

Such personal experiences, which feel like rejection by one’s spiritual home, can cut close to the soul.   Carol J. Gill, Ph.D., a research and clinical psychologist who uses a motorized wheelchair and a ventilator at night, has explored these feelings:

“Persons with disabilities demonstrate that they value their lives a great deal more than others do.  Those who give up on life do so only after struggling with the very human pain of unmet needs.  Society must not silence those needs by death but by assisting their fulfillment.” 4

Not surprisingly, Evangelium Vitae also reiterates the difference between the negative stereotypes of disability and the lessons people with such challenges can teach:  “. . . . [T]he courage and the serenity with which so many of our brothers and sisters suffering from serious disabilities lead their lives when they are shown acceptance and love bears eloquent witness to what gives authentic value to life, and makes it, even in difficult conditions, something precious for them and for others.” 5

On December 3, 2000 in the presence of John Paul II I addressed a Vatican City audience with these words:  “We, the disabled people of the world, must illustrate and teach the people of Christ’s Church the power of the powerless, the strength of our shared vulnerability, the wisdom of the concrete-minded, the beauty to be glimpsed beyond sight, the healing words not spoken aloud.”  Eight years earlier, in the same auditorium I’d said,

“Our vulnerability, which has been encoded into our gene pool, is the catalyst which brings us into community and the Church with renewed recognition that we need each other and Our Lord.  When God tied the gift of life to the trait of vulnerability, He may have given us the only incentive which could counter our tendency to disregard the rights and values of others.  It is our common recognition of interdependency which weaves the threads of our societies together.  Each time we feel needed and essential to another, the threads of that interaction are reinforced and the fabric which holds us together as Church and as society is powerfully strengthened.”

            Arthur C. Custance's fascinating essays in "The Place of Handicaps in Human Achievement,” include an analysis of St. Paul’s thorn, which he considers a physical disability.  He notes, “Whatever [disabilities] are, they need never be a curse in the life of the child of God, for it is true that all things work together for good to them that love God (Rom. 8:28) if we can only have patience and trust in His love.  After all, we did not choose Him.  He chose us.” 6   

He expanded on this idea in his chapter, Where Hindrance is Help, “[H]andicaps do not, in themselves, prevent achievement: indeed, a case may almost be certainly made for the thesis that the absence of hindrances of some kind is more likely to lead to failure than their presence is.”7

            Thirty years ago I was targeted for success as an academic, but a spiritual “failure” in Custance’s nomenclature.   As an intellectual bigot I was completely insensitive to how precious every human life can be and had little patience for those less functionally perfect than myself. 

It was then that God gave me the gift of blindness, later followed by partially hearing and spinal injuries which resulted in the need to use a wheelchair.  During those three decades I was taught the beautiful symmetry of human gifts and needs – my strengths and weaknesses commingled with those of all I’ve met along life’s way.

Then unexpectedly several surgeries and the intervention of Blessed Margaret of Castello brought about a miracle.  Return of sight gives me great joy.  I can again explore those vast volumes of knowledge I missed during the days of blindness.   

However, the greatest gift was that blindness, the “hindrance” that forced recognition that every precious human life is created to illustrate some essential element of His presence in the world.  Until I learned to truly value and welcome the experience of our shared vulnerability, I was not witness to the lessons He laid out before me.

In 2000, on the Jubilee Day of the Disabled, the Holy Father spoke of the advances made and tasks ahead to create meaningful welcome for all, stressing “important and urgent needs on which it would be good to pause and reflect.” 8

Let us come together and reflect.

 _______________

1.                  John Paul II. Evangelium Vitae – Section 15. Vatican City, Rome. 1995.

2.                  Ibid – Section 12

3.                  United States Conference of Catholic Bishops. Welcome and Justice for Persons with Disabilities: A Framework of Access and Inclusion. Washington DC. 1999

4.                  Carol J. Gill, PhD. Suicide Intervention for People with Disabilities: A Lesson in Inequality. Issues in Law & Medicine, Vol. 8, No. 1, Summer 1992.

5.                  John Paul II. Ibid – Section 63

6.                  Arthur C. Custance, PhD. Man in Adam and in Christ. Part V: “The Place of Handicaps In Human Achievement.” Chapter 1. Where Hindrance Is Help. First published in book form in 1975. Online edition, June 17, 1997.

7.                  Ibid, Chapter 3. A Thorn in the Flesh.

This essay appeared in Our Sunday Visitor’s The Priest Magazine July 2003.

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