Telling It Like It Is!

Religious Educators representing various denominations met with a group of disabled persons and advocates in a two day symposium at Catholic Theological Union, Chicago. The Educators asked them to "Tell It Like It Is" concerning their experiences with Churches and Synagogues. The major part of their response is presented here.

QUESTION: "What thoughts do you have about the way religious organizations have treated you... about the interpretations of theology and scripture...what are your anxieties and problems?"

RESPONSES: "Disabled activists have excluded church-representatives and, I think, very wrongly. We have excluded them because they have excluded us. It goes back to the Old Testament -'an eye for an eye'. We have ignored you. You don't recognize our worth, so we don't recognize your worth."

"That sounds like an opportunity for reconciliation!"

"I don't think we're quite at that point yet. I think we have a few more cards to get out on the table. As a very young boy I had a noticeable, visible disability which was visible to others, but I really didn't notice that I was walking with a very slight limp. I WAS REFUSED TO BE AN ALTAR BOY BECAUSE OF MY LIMP. That was the first time that I figured out that there was something wrong in what they were teaching. This went beyond the bounds in the deepest part of me. I should not be excluded from being an altar boy. Later, when I had to use a wheelchair, I started finding out all kinds of things. For instance, I had to be lifted up some steps to get into the church. When I went to confession, I had to do it out in front of everybody. The priest would come out of the confessional and there we would be with an entire audience of people. It was very embarrassing. When I moved away to college, the church that was close was not accessible at all, and the students at the university had been arguing with the church for a long. long time to make some arrangements. They showed them what kind of a ramp they could put up, but the?e was great resistance. They didn't do it during four years that I was there. That's when I stopped going to church entirely. That's been 25 years ago."

"Well, the architectural barriers are terrible but they don't usually keep me out since I don't have to worry about things of that sort. But there are other kinds of barriers that I think somehow impinge on all of us far more seriously and that's THE KIND OF ATTITUDES, the stereotypes we get that last forever. From the time of the Old Testament until today we haven't gotten away from this whole idea that those who are different are somehow not worthy. One example: after achieving what I thought was pretty fantastic: marrying, having children, getting a PhD, doing all these things. I talk to my pastor in the parish and he says: 'you don't have to do anything, dear All you have to do is walk down the street and you preach a gospel to people. So don't worry about doing a thing.' My whole life was to be walking down the street! - and I'm not a streetwalker!"

"I found in my experience in the hospital that the church so far hasn't known what to do with us. Even in confined institutions like the hospitals, the rehabilitation areas, the chaplain or THE PASTORAL CARE PERSONS DON'T KNOW HOW TO RELATE TO THE FACT OF A DISABLING INJURY. Maybe that is the bedrock of all the acting-out that happens and causes many people to just not bother with them anymore. In my experience, it was shocking to experience the isolation. There was enough isolation already. But then they add the extra isolation."

"With regard to the support we get, take for instance, a person who is living in a nursing home; that person might get support from a priest or from someone from the church to help comfort them and make them feel better in the situation that they're living in but l WOULD LIKE TO SEE THE CHURCHES TAKE A MORE ACTIVIST STANCE AND ENCOURAGE THAT PERSON TOWARDS SOME GOALS FOR INDEPENDENCE. It's very easy once you get into an institution to just let everything happen to you and not take responsibility for your life anymore. Rather than comfort a person in a situation like that, I would like to see people encouraged to move on and to fulfill whatever aspirations they might have had before they ended up in such a dire situation."

"It seems like disabled people fulfill a terrible need of some able-bodied people and that is that they need someone who is weak to show how strong they are. It frustrates me."

"I think there is an element of truth in that. We're going far beyond the church here as well. I think it's part of society that the "do-gooders" who get a lot of praise for what they do - like the Jerry Lewises - are not really doing good for the individual disabled person because what they do FOR them is so demeaning."

"In a sense it's even more than that. I'm into all sorts of names and what they mean. I think I was misnamed. I SHOULD HAVE BEEN CALLED SISYPHUS BECAUSE NO MATTER WHAT I DO I'M BACK AT SQUARE ONE AGAIN. 'This is terrific, let's see if she can do it. My God, she did. Ok, let's start over again.' When I got my first job at my University it was only because I threatened to press charges on them if they didn't give it to me. You know, it's really too bad to have to go this route. Nevertheless, when I finally did get the position, what they did deliberately was give me the farthest job away from my home. Every day I would take the train two and one half hours one way, two and one half hours back every day. They gave me the classes at 8:30 in the morning and 4:30 in the afternoon. The point was: 'she is not going to be able to do it. And when she doesn't, we'll be able to pick up the pieces and say: it's OK, honey, it's alright. We'll give you your degree.' I DID IT. Then I got that all done and the next thing was looking for a job. Forget it! I'm back to square one: 'Let's see if she can do it.' It seems like a constant thing of rolling up the hill and they back off and say: 'isn't that wonderful. Isn't it terrific all those things they can do.' I think that is what the discouraging part is, because you think you have achieved and when you get to a certain point you can build on that, and you don't."

"We have stigmatized this 'holiness thing', too. When you're disabled, you're SPECIAL, you're singled out somehow. This disability is a special message from God and you get to be a carrier of The Word. Just because you seem to be surviving and content you're seen as different. When you're a kid and you're perceived that way, it can be a further alienating experience when the other kids don't want to go out and play with a saint."

I want to set people straight with this idea of SPECIAL. Disabled people aren't 'special' and able-bodied people sometimes think they are. Well, I think we are too, but I think YOU'RE SPECIAL also. You're 'special' if you think well of yourself. We're not going to enrich ourselves with junk) and if I spend my time with you that means that you're special. If you spend your time with me) that means I'm special."

"Yes, that's a real good way of looking at that word. But I'M afraid the word 'special' has deteriorated over the years because it's become a code word for SEGREGATION. We have 'SPECIAL SERVICES': 'special' transportation, 'special' schools for handicapped children. That means SEGREGATED, SEPARATE AND NOT EQUAL. That's why the word sets me off, although I agree with your use of it."

"One thing that turned the corner for me: I was home after I had my accident because I couldn't find a job. I lived in a trailer, and there was a minister who was extremely good to me and my family after my accident. He came over one afternoon when I happened to be sitting there. My wife was at work and he came and asked if he could sit down and talk to me. I said 'fine' and he started talking about his religious affiliation. He asked if he could pray with me. I said 'of course but what he wanted to do was to pray to heal me. We prayed, but inside I was steaming with anger. I knew he was trying to do what he thought was right, but inside, I really got turned off. He was saying to me - at least in my interpretation of it - 'if I can heal you, then you are whole again, and if I can't, you are not. If I can heal you, you have no shame to deal with, but if I can't, maybe you do.' Unfortunately, it ended a personal friendship."

"Most people I know who have become disabled have had an experience like that. We can be sitting in a restaurant, minding our own business, and someone may approach from another table. Usually, they're not approaching us on whether you can go to college or find a job. It's something on a religious basis. I'm beginning to think that the particular difficulty that we as disabled people are having with churches is that to a certain extent all of us look at it as SOCIAL JUSTICE ISSUES because the stairs in a church or synogogue are just as much a barrier as the stairs in any other public facility. And it becomes compounded with the theological bases or perspectives that are put on it. Many assumptions are made about us, which have gone on for thousands of years. This applies also to us with disabilities. WE HAVE TO LOOK AT THIS ALSO AS A SOCIAL JUSTICE ISSUE. We have to begin to assert ourselves and address some of the misconceptions and myths from a biblical perspective, that is, the saints and sinners syndrome. The 'shut-in' syndrome is still very prevalent, and disabled people for the first time are starting to say to their priests, ministers and rabbis:'I'M NOT A SHUT IN, I'M A SHUT-OUT!'. We all know of disabled people who are convinced that they must have done something wrong, or that this disability is their 'cross'."

"AND OUR CROSSES SHOW so everyone can see that this is a burden that we carry around with us - our wheelchair, crutches, canes, whatever. We get perceived that way."

QUESTION: "All of you seem to have adjusted and adapted and you're here. What would someone not here say about the church?"

"They would probably say, 'what church?' They feel very apart from the church because of the absence of good ministry connected with incidents of their disability. There is just a big void. There are no channels built in the way the church works. The absence of the church is felt. Where are they? The aloneness is felt."

"I was a rehabilitation counselor at the Rehab Institute of Chicago for 12 years and I saw a lot of people who came through there. I saw two extremes happening. One, I saw people reaching for God in the 'HOPE OF A CURE' syndrome, that is, 'if I get close to God, and if He accepts me, and I accept Him as my Saviour, and pray, then at some point God is going to heal me. Two, I saw the total Opposite reaction: people who were not real religious, but did attend church occasionally, BACKING AWAY FROM RELIGION as if God had abandoned them. I saw those two kinds of reactions and am not sure that either one of them were helpful....I didn't see very many people falling in the middle, that is, whose feelings about their God, whose feelings about their religion and their church, did not change one way or another as a result of their disability."

QUESTION: "How do parents of a disabled child feel the churches or synagogues have responded to their need and have they offered continuing support?"

"I can't speak for others, but in my own experience, the church was not supportive. Even in this group, I feel like a 5th wheel, an after-thought. PARENTS OF DISABLED CHILDREN ARE ALMOST ALWAYS UNDER- REPRESENTED."

"Yes, it is a problem not only in this conference, but even with groups of disabled people. Those of us in wheelchairs are most visible in the struggle for rights, but the issues that have to do with disabled children and their parents do not get addressed clearly enough by the rest of us.

"One of the problems with groups such as some Right to Life groups is that they do not extend their concern to the problems of parents and family AFTER the birth of a disabled child. These two aspects of care for life must go together."

"Yes, it is interesting that when Cardinal Bernardin presented his views on "the seamless garment of life", linking problems of abortion with those of nuclear weapons, there was a tremendous amount of flak from certain groups."

Acknowledgments

This symposium was sponsored by The Healing Community, The United Church of Christ, Stauros and Catholic Theological Union. Persons present associated with the following organizations: Access Living, Friendship House, Board of Rabbis, Sinai Congregation, Coordinating Council for Handicapped Children, Archdiocesan Apostolates with Deaf and Handicapped Persons, Schwab Rehab Center, Rehab Client Advocacy Project, Niles College Seminary, Loyola University, DeAndreis Institute of Theology, Society of Friends, St. Louis University, Mundelein College and The Urban Academy.