Where Were the People of God?

John Hunter
Presbyterians for Disability Concerns (PDC) Leadership Team

Like most people with disabilities, my entry into that population was sudden and swift. When I awakened the morning of April 19, 1984, the vision in my left eye was blurred. A trip to my ophthalmologist revealed that I had had a venous occlusion during the night and irreparable damage had been done to retinal nerves. Several other retinal problems occurred and by September, I was legally blind.

During the following months I spent considerable time and money traveling across the country to find a cure. There was no consideration of anything but to be “cured.” Fortunately, I had considerable sick leave built up, so I did not end up with major debt like many others.

Up to that time, I had been so engrossed with all the medical treatments that I had not thought about my future. While lying around home waiting for the rest of my body to recover from the trauma of so many surgeries and procedures, these thoughts came to mind. I got scared. Really scared! I was not yet eligible for retirement and was sure my family would have to downscale our lifestyle if we were to survive on my contribution to our combined income coming from Social Security Disability Insurance.

I went through battles with anger, depression, and feelings of betrayal. I had no support system to help me through this miserable time. My church was unable to assist me because they had no clue as to what I was going through. Oh, I got the “plate-itudes" — “God never puts more on your plate than you can handle,” “Don’t think about ALL the things on your plate; try one at a time.” Well, my feeling was that the plate was too heavy and wobbly for me and I could have used a hand to help steady it.

Immediately after recovery and my return to work, my rehabilitation began. Services for the Blind and Visually Impaired was one of the programs in the umbrella state agency where I worked. We knew where to go for rehabilitation. We discovered that the program I worked for was mandated by sections of the Rehabilitation Act to provide continued employment and adaptive equipment for employees who became disabled and were in rehabilitation in order to continue to work. My search for a cure turned into a search to gain whatever training and equipment I needed for my job. I worked another ten years until my retirement.

Retirement meant I no longer had a focus on medical procedures and job performance, and I was without the acceptance I had valued from my co-workers. Now I had to deal with the psychosocial phase of disability that I had been too busy to deal with while I was working. I crashed hard. I had to deal with feelings that had been repressed. Since most of my support system had been my rehabilitation program and my job, I was left to deal with this phase with only general medical assistance and I ended up on medication.

During my working time, I had drifted away from the church because they offered little of what I felt I needed. My focus had been on rehabilitation and work. The church had not understood the rehabilitation system and had not recognized that, in the end, that single focus would leave me in trouble. They had left themselves out of my support system and the spirituality I did not recognize as a need. Oh, God had certainly been there for me, but not the people of God.

In seeking a new support system, I wandered back into the church only to find that now I was considered in a different way. I was pitied, pandered, and avoided. Therefore, that did not last long. Through the local newspaper, I found a support group for people who were visually impaired. After joining the group, I came to the realization that everyone in the group was in worse condition than I was. I became the group advocate and mentor. In helping others, I was helping myself. In trying to find resources for the others, I became aware of independent living organizations and other advocacy groups. They were promoting the “ridiculous” idea that persons with disabilities could live independently, had rights to accommodations, and were consumers.

A grass roots committee to start a center for independent living in our community asked me to join them. I became the chair of the organizational board. I then served over five years as chair of the operating board of directors until we moved away from that community. I had found a support system again based on work and involvement. I was facing my feelings about being disabled by helping others who were facing their feelings.

The independent living center experience opened my eyes to all sorts of services: the availability of funds for city governments to help make homes accessible, funds to provide public transportation, places for rehabilitation or skills training, and personal assistant programs. Information and referral was a big part of our center. We not only developed our web site with information about community services, but we also linked to web sites of other providers with links to even more services. Peer mentoring and advocacy were part of our program to help persons with disabilities help themselves. Community outreach to advertise our services was a big part of our program.

Having been born a Presbyterian, and having been involved with the church all my life, I still felt drawn to the church. By now, I had regained my confidence and assertiveness to go back and face the good people of the church. No more did I give in to the pity stuff. I gained respect and attention of a few and was avoided by many. When I started to advocate for physical accessibility in the church, I came up against the attitudinal barriers. However, somehow (probably in retribution) I was elected as an elder on session. This time I was facing the big guns. I was able to get only minimal accommodations in order to read all the paperwork and reports. I was mostly left out of discussions and decisions based on written information. In addition, I found a lack of accommodations from the denomination when I asked for the Book of Order and other material elders need. I wanted this material electronically. Brick Wall. Then I learned of the PHEWA and PDC network. I thought, “At last, I found a group within the church that understands disability.” They were, however, struggling with many of the same issues I had faced: “How do you get the Presbyterian Church to be open and accessible?”

In the twelve years I have been a member, great strides have been made to improve accessibility. The Book of Order is now available on line. Nevertheless, we know that there is still a long way to go. PHEWA has consultants who are available to middle governing bodies and local churches needing help on disability issues.

In the years since my work with a local independent living provider, I have been active in other disability organizations. My appointment to the Governor’s Statewide Rehabilitation Council and, later, to the Governor’s Statewide Independent Living Council taught me a great deal about employment issues of persons with disability and independent living issues. Can you believe that there is a 65 to 75 percent unemployment rate for people with disabilities who are ready and able to go to work? Would you believe that people with disabilities are hidden away in homes or sent to nursing homes because families are ashamed of them? They could be leading quality lives with the right kind of help. These councils were charged with locating, assessing, and advocating for services in all areas of the state. Many community outreach events are scheduled each year.

Through a friend who was chair of the Presbytery Committee on Representation, I was elected to be on the committee to fill a need for disability representation. The lack of interest from presbytery was discouraging and brought out feelings of anger, so I left with one year to serve on my second term. Again, my experiences with the church had been disappointing at best.

I kept returning to the government and public sector to share my experience and knowledge. I am still somewhat bitter that so much time went by when I could have been working with both my church and the secular agencies. I could have provided information on many local disability resources. Moreover, the church could have been a resource to me in areas that the secular agencies could not provide. I am now in a church that mostly accepts me as an equal and gives me the responsibility of being the clerk of session. I feel that my spirit in refusing to be put down as helpless and my demand for the accommodations I need have contributed to my acceptance. However, there is still so much that needs to be learned in order for this church to consider themselves inclusive.

I have mentioned many organizations from which I have received and given help. These agencies can be resources for churches. In many cases, they are local. Perhaps the employees of these organizations are neighbors or members of your own congregation. I learned of these organizations one by one over a period of time. They all now have Web sites which give very good information and links to other organizations. They are now instantaneously available. With little effort, churches can access these Web sites, can obtain speakers and attend local conferences and seminars on disabilities without having to travel to the large cities. Church members can volunteer in the agencies as a community mission. The possibilities to bridge the gap between secular and church organizations are numerous. We do not have to sit and wait for the word to sift down through the church governing bodies.

PDC has a valuable Web site with many resources on the church and disabilities. In addition, wouldn’t it be great if local churches and presbyteries would become informed and work with community resources? They could even get to know the rehabilitation system. They could work in conjunction with the rehabilitation agencies to provide the pastoral support side of a person’s rehabilitation. They would know the various stages a person goes through in learning to cope with a disability and could give pastoral care appropriate for each stage. They could point out the many resources if the person was floundering in finding the right type of help. They could learn about how a disability impacts an individual’s life. They could recognize the attitudinal and physical barriers that create exclusive churches. Wouldn’t it be great if when an individual becomes disabled and is going through the trauma of seeking a cure, going through rehabilitation programs and learning coping skills, their church was in tune with and part of their support system? Isn’t reaching out to other people who are in the Body of Christ the right thing to do no matter what problems they are facing? The resources are there in your own backyard. Just reach out. You could even be helping yourself when your own disability happens.