Spirituality

A friend who has multiple sclerosis urged me to do an article on Spirituality vis a-vis disabled persons. This gentleman was in his thirties when his multiple sclerosis was diagnosed. At the time, he held a top executive position with a broadcasting company, was a very happily married family man, an avid athlete, and in every way enjoyed what is considered a very successful and fulfilling life.

Suddenly, his whole life changed. Forced to leave the business, he underwent extensive medical care. His legs became paralyzed, necessitating the use of a wheelchair. In short, he had to learn a whole new way of living as well as to develop a whole new philosophy of life. Besides the physical and emotional problems within himself, he became aware of the attitudinal and architectural barriers in all aspects of society which severely limited his independence. He had to deal with the pain, the frustration, the uncertainties, the radical changes in his life.

With some emotion, he said to me "I had to return to a spirituality and to prayer and that was what brought me around. That has enabled me to accept my condition and to go on with a happy and productive life."

There are tomes upon tomes on Spirituality and the various forms and schools of the same. Some of the greatest minds in history have spent lifetimes on the subject. Thus an article of this length can hardly do justice to it.

However, reflecting on the lives of the disabled people with whom I have been associated, I find that they, by and large, are ideal models of contemporary spirituality.

The term 'Spirituality' ordinarily brings to mind elements such as faith, prayer, church attendance, sacraments, reading sacred scripture, contributing to charity, etc. These are indeed practices of piety, a genuine part of spirituality, and have been a source of courage, comfort, inspiration and strength for untold numbers of people.

However, there is a history that these acts of piety have often been used as protective devices, attempts to keep in good standing with God, paying one's dues, so to speak, while at the same time being insulated from the supreme test of spirituality: an involved love of others, and Sharing the suffering of others, as so graphically illustrated in the story of the Good Samaritan. It's worth recalling the major points of this encounter between Jesus and a lawyer. After Jesus has reiterated the supreme law of love for God and loving neighbor as oneself, the lawyer quibbles, saying: "But who is my neighbor?" At which point Jesus tells the story of the man who was robbed, stripped, beaten and left on the road half-dead. A priest comes along and sees the man but passes him by. Another cleric comes along and does the same. But then comes a Samaritan, a member of a sect which the Jerusalem Jews despised. It is this man who not only took care of the man's wounds personally, but put him up in an inn, paid his rent, directed the innkeeper to take care of him, and promised to meet all the expenses on his way back.

There are those who proclaim their love for God in their devotions, but studiously avoid being the 'Samaritans' in their social settings. For example, there are schools and colleges under religious auspices where intensive daily prayer sessions, serious Bible studies, training in church ministry takes place, but where no black person can participate....In most of the major religious traditions, there is a long history of excluding disabled persons from being priests or ministers....There are well-to-do, church-going persons who will help any cause from afar, but when it comes to integrating a neighborhood, or allowing a group home for mentally impaired persons, they will have none of it.

By contrast, the disabled friends with whom I've been associated are indeed today's Samaritans: considered outsiders, shunned and repudiated. Some have never had the opportunity to belong to a church and know little or nothing about religious language and practices. Others who have had some religious training have been shut out by architectural barriers, or program barriers, such as no braille for blind persons, no interpreters for deaf persons, or no adequate instruction for developmentally impaired persons. And of course, there are the old, faithful church-goers who brave all obstacles, bite their tongues and keep going.

These 'Samaritans' are a mix of men and women, varying in age, color, nationality and disability. It is in them that one observes the qualities, characteristics and activities that manifest a genuine spirituality: that involved love, and sharing suffering.

"To be spiritual", to quote one author on the subject, "means to know and to live according to the knowledge that there is more to life than meets the eye." What most often meets the eye of the able-bodied person looking at a disabled person is "tragedy", "misfortune", "a curse. Psychologists point out what causes many non-disabled person to look away when a disabled person approaches is an unconscious fear they may find themselves in the same condition.

Spirituality, as the word indicates, is in contrast to what is material and transitory. At the same time it gives meaning to what is material and transitory. It reaches beyond what meets the senses to the deeper, inner meanings of life.

It is this inner meaning and appreciation of life which disabled persons achieve in a remarkable way and are exemplars for the rest of society. To give an example: speech, sight, hearing, feeling, smelling, touching, walking, tasting, even thinking, are all functions of the body and the mind. Non-disabled persons tend to focus on a disabled person's lack of speech, or of sight or of hearing or of talking or of walking or of unclouded thinking. They may even blame the person for that, judge them as inferior and perhaps allow themselves to be repelled by it, or, more commonly, stay away from those with disabilities.

But disabled persons, and for the most part, their parents and family members, transcend that limitation, whatever it may be. They see the dignity and the beauty of the person! They are willing to make any sacrifices, go to any lengths, to have others and society as a whole recognize this truth.

Theirs is an approach to life which is relational and communitarian, not narcissistic, or individualistic. Their Spirituality is a style of life, not just a program of religious exercises.

What makes them so remarkable is the hard fact that in almost all periods in history and in all religious persuasions disabled people were those most discriminated against, even considered as being punished by God for their sins or the sins of those close to them - their parents, spouses, or children. Still today they are hounded by people badgering them to repent of their sins and thereby be cured. On the opposite side of considering such persons as being punished by God there has also been a tradition in some religious circles to glorify disabled people as 'saints' -'angels' -'victim souls', gifted with the grace to suffer. In a Symposium held at Catholic Theological Union in Chicago comprised of a large mix of people with disabilities and a variety of religious backgrounds, these participants repudiated any such notions and firmly declared that they want to be considered in the same manner and to be judged in the same way as anyone else. In particular, they do not want to be objects of charity or condescension but to be treated as equals, not better than, nor worse than others.

In our secular/political world they have been shut out more than any other minority group. It must be remembered in this context that even in our own country, touted as the most advanced in the world, disabled people were denied their human and civil rights from the landing of the Pilgrims until 10 years ago. They were not even included in the Civil Rights Act of 1964. It was not until 1973 that legislation was enacted declaring those rights on the federal level. Regulations to implement this law did not take place until 1977, and only then because thousands of disabled persons themselves staged sit-ins at the offices of HEW around the country to force the implementation of the '73 law. That implementation still has a long way to go.

Today and every day, thousands of disabled persons, and their families, in a vast variety of ways, are pleading and demonstrating before legislators and government agencies, at their own expense and great personal sacrifice, seeking their rights to jobs, housing, education, transportation, and adequate health care. In spite of their heroic, unpaid efforts in this, the pace of change is torturously slow. But they persevere! It is that dogged, determined perseverance which first grabbed my attention and wonder -a perseverance in tolerating their own pain and frustration, and a perseverance in the efforts to remove the sufferings of others. Seeing this led me to realize their very special, genuine, down-to-earth spirituality, and to reflect on those other unique characteristics of their spirituality:

A deep appreciation of creation -their own creation, their humanity, their dignity and worth despite the age-old stigmas demeaning them as persons, and the exclusionary practices which, in effect, said that they are not worthy creations, not fully human, not made in the image and likeness of God.

A profound understanding of the value of life, even when there are extensive functional limitations. Coupled with this is the appreciation of every other person's life, and the rights of those persons to appropriate assistance and support to live' a full life. A College Biology Professor, who uses a wheelchair due to spina bifida, tells this bit of her personal history: "I was born in 1946. In 1945 my parents had given birth to another baby girl, Ann, who had died within a few weeks from complications of spina bifida. In about 1967, I was a very successful college student, reading Time magazine, when I came across a report urging parents of a spina bifida child not to try to conceive again, because these children's lives just were not worth living. I wish you could experience what it is like to read in Time that your life is not worth living."

A keen sensitivity to suffering, particularly those forms of suffering resulting from the cruelty, repudiation and indifference of others - the kinds which have filled their history. This accounts for their 'thirst for justice' on behalf of anyone who is disenfranchised

Together with the foregoing, there is forgiveness, seventy times seventy, pressed down and running over, for all the hurts, humiliations and repudiations.

Finally, and above all, there is love.

One of my unchurched friends wrote me this letter which says it all:

"We disabled people are so special. I can think of hundreds of instances where I have witnessed and felt personally the simple and total love we have for one another. Do you already know, truly know what that love is? Do you know how that unspoken bond feels even between strangers passing who have nothing in common but disability? Every once in a while I stop and reflect in amazement that we disabled people all have this gift of pure love for one another.

"We're far from perfect, we 'gimps' of the world but, oh boy, are we ever special! What a gift we have been given! I was grappling with this term you use so often - Suffering. That word has connotations that I would never apply to myself or anyone I know who is disabled. Does that startle you? I've asked some of my disabled buddies about that word and without exception, they all said: "No, I don't ever consider myself as one who is suffering." But, upon reflecting about this love that runs rampant among us, I must say I have changed my mind.

"Physically, sometimes, at the very moment of your own agony, it is nearly impossible to understand why you have to go through it. There is no such thing as suffering gallantly through the pain and misery. You cry and moan and groan and curse and cry some more. And you know that in all the world, only other disabled people know just what you're going through...Emotionally, there is no way to get away from the daily struggle to live and survive when you are disabled. Even those who choose to stay in, to stay sheltered from the real struggle outside, are wracked with loneliness and an unfulfilled longing for acceptance and 'normality'.

"You can be somewhere in a room with 50 fellow disabled advocates at a 'very important meeting' and the guy over in the corner who is the worst so-and-so you ever met will blow his catheter, groan and double-up in excruciating pain. Whatever else that was going on comes to a screeching halt. The word gets passed through the crowd and everyone automatically starts digging in their various bags for the ever-present extra supplies we've learned to carry. Everybody knows exactly what this guy is feeling right then. Other paraplegics and quadriplegics in that room go pale remembering the agony that can only compare to a bomb going off in your own body. You shudder at your own memory. The guy is crying and you know just when and where and how he's hurting the most. You go closer quickly even though this person seems to emanate the pain.- You go to it. And you go with total love. The room full of some of the world's rejected people are right with you in spirit. You handle the guy with gentleness. He grips your wrist as tight as he can because it is still so very painful, but he knows we are all suffering through this with him. It's collective suffering at that point. I believe anyone in that room would gladly take as much of his pain as they could, just to relieve his suffering. Ah, if only we could really do that! "No matter what else we might be - those qualities that make us individuals (both unique and wonderful, but also not-so-nice sometimes) - we are truly different from nondisabled people. When you come together with other disabled people you bring with you a sense of great injustice done to all of you; you bring all the pain, loneliness, cruelty, misunderstanding and ignorance that exists towards all of you. There is so much that is simply wrong about the way we are treated - we never, ever treat one another that way."