WINGS: A FAITHLETTER FOR, BY AND ABOUT UNITED METHODISTS WITH DISABILITIES AND THOSE WHO CARE ABOUT THEM Fall 2004—Vol. 15, Issue 2, No. 58 Those who wait upon the LORD shall renew their strength, they shall mount up with wings like eagles.... Isaiah 40:31 [NRSV] FROM WHERE I SIT: "WE DON'T HAVE ANY OF THEM HERE" By Jo D'Archangelis (The following is based on a talk given several years ago to a church group in Oceanside, Calif. —Editor) Awareness, Acceptance, and Accessibility: these sum up for me that somewhat complex topic of disability and the church. Since much has already been written in these pages on Accessibility, or the how-to's of making churches and other faith communities open and welcoming to people with disabilities, here I'm just going to concentrate on Awareness and Acceptance, those attributes which I believe constitute the foundation upon which true accessibility is built. First, let's consider Awareness, i.e., the awareness of people with disabilities within the church—or, more accurately, the non-awareness of people with disabilities within the church. Since the early 90's Wings newsletter has been sent to most of the United Methodist churches/congregations in the California-Pacific Conference, whether they wanted to receive it or not. With Some years ago I got a card from one of those churches asking me to please drop the church from the Wings mailing list. Now I've gotten requests from individuals to be removed from our mailing list and usually I do so with no questions asked, but this was the first and only such request I'd ever gotten from a church. So I e-mailed the pastor and asked him if he had some concerns about the newsletter. He e-mailed back that he received too many newsletters and had no time to read all of them. Wings, he said, wasn't a high-priority newsletter for him because "the articles in the newsletter do not relate to my constituency." I removed the church from our mailing list, but I remain puzzled to this day. Did he mean there were no people with disabilities in his congregation, no people with disabilities in the families of church members, no people with disabilities in the community his church serves? Sometimes it seems that unless or until a pastor falls over a wheelchair on his/her way down the church aisle, he/she is blissfully unaware of any people with disabilities in the church family. This, unfortunately, is not only the case with clergy but with church laity as well. "We don't have any people with disabilities here," "Where are they?," "We never see any," church members often say. One reason why a church may not be aware of people with disabilities in their congregation is that some people with disabilities may not want to bring attention to themselves or to make an "issue" of their disabilities. Another reason why a church may not "see" people with disabilities is that people with disabilities may not be able to get into the church, may not be able to fully participate in worship and other activities if they can get in, or just may not feel particularly welcome. According to a government survey, 15-20% of the total population in the U. S. has some kind of disability, with half of those being severely disabled. This means that we arguably constitute the largest minority in the U.S., cutting across age, socio-economic class, race, ethnicity, culture, and nationality. On the basis of these figures, I think it safe to say that even the smallest congregation in the UMC is likely to have members with significant disabilities and/or members who have family with significant disabilities. Keep in mind the wide variety of disabilities that exist. Some are mental, including retardation or developmental disabilities, learning disorders, and mental illness. Some are physical involving problems with mobility, balance, co-ordination, and other motor functions. And some are sensory, the most common being blindness and deafness. There are invisible disabilities—e.g., pulmonary or cardiac problems which may limit activity, epilepsy or other seizure disorders, and even deafness which is often regarded as an "invisible disability" since one's outward appearance gives no sign of it. Last but definitely not least, there are disabilities that come with aging; vision, hearing, or mobility may become more problematic as people get older. Certainly all congregations have some aging members with disabilities. And how many of them as they find they cannot navigate the steps, hear the sermon, or read the hymnal give up on coming to church altogether? So if someone should say to you, "We don't have people with disabilities in our church," ask them, "Why not? What is your church not doing?" (To be continued) DISABILITY AND THE CHURCH: SOME OPEN HEARTS, MINDS, AND DOORS Since [1999] John Robert Hillman, 39, who has Down's syndrome, has volunteered once a week at Vine Street Elementary School near Brandon, Miss. There he reads for two hours to the third-grade accelerated reader class and sometimes joins them on field trips. Hillman also volunteers at the after-school program at St. Mark's [United Methodist] Church near Brandon, where his father is pastor. At the weekday program that serves about 25 children in kindergarten through fifth grade, Hillman helps with snacks, directs games in the gym and sometimes helps with homework. "It's an enjoyable experience for me to read to and work with the kids," says Hillman, who also volunteers at the vacation Bible school and every Sunday's "children's church" at St. Mark's. "When I was young, I loved having my family read to me. Now I have the chance to do the same for other children." —Heather Peck Stahl— From Interpreter (Nov./Dec. 2000). Heather Peck Stahl, who lives in Nashville, Tenn., is a free-lance writer and editor. A teenager with cerebral palsy was able to speak for the first time recently with the help of a computer donated by The Life Center, a ministry of First United Methodist Church in Goshen, Ind. Dustin Stahl, 14, attends Goshen Middle School, where his teacher, Angie Balsley, saw him use the school's pocket computer to communicate during a field trip. She had no luck obtaining a grant to give Dustin his own device, but when a First UMC volunteer heard of the problem, the church's youths raised $2200 to buy a computer. Ryan Kinel, a freshman at Goshen High School who participated in the offering, said he felt compelled to help when he heard about Dustin's situation. "I'm not exactly sure why," he said. "Maybe it was God speaking to me." An Associated Press story from "Church In The News," UM Review (May 21, 2004) University United Methodist Church, on the campus of the University of Southern California, is in the midst of a $300,000 handicap accessibility project which will make the church accessible for persons in wheelchairs. The project involves building a ramp on the exterior, redesigning the new entry area for a ramp to the sanctuary, and reconfiguring a restroom for accessibility. During the construction, services are being held outside on the USC campus. While there has been disruption of normal activities during the week for the church and those who work in the building, the result of the project (which was to be completed in August) will be something the congregation has wanted for over 20 years. Adapted from Cal-Pac Update, the electronic newsletter of the California-Pacific Conference of the UMC (Aug. 6, 2004) KEEPING THE FAITH: MORE THAN A GUEST By Josie Byzek Sue Sterling Montgomery, pastor of the Nickleville Presbyterian Church in Emlenton, Pa., says resurrection and transformation in life are integral parts of her faith journey and her ministry. "I don't mean in death, because I'm really frustrated with people who say when you die then the deaf will hear, the lame will walk, and the blind will see." She says that kind of emphasis is not healthy—she even calls it sickness. "It totally says to those of us who are disabled that we don't have any worth until we're dead, and that our bodies must conform to society's standards of normalcy in order for us to be accepted. My faith says that Jesus accepts me for who I am and as I am, not with perfect legs...or a perfect figure like Barbie's." She remembers the day she finally admitted she needed to use a wheelchair for her bilateral osteoarthritis—at the 1992 Presbyterian general assembly meeting in Baltimore, Md. The hotel her family stayed at kept offering her a wheelchair. "The more it was offered the more I refused. We were on our way to worship, and our son was 5 at the time. My husband was chasing him, and I was trying to keep up." She was 45 minutes late to service and burst into tears. "I couldn't go anymore. I just had to sit; the pain level was intense." She bought a wheelchair not long after that and said using the chair was like getting her life back. "Suddenly I could keep up with everybody else. Actually I left them in my dust, and I learned I wasn't alone on that journey. But then people started judging me as having given up, and that was hard." Montgomery even endured people questioning her faith—although not people in her congregation, who she says have always been supportive. "I don't know why people think they have a right to enter into my private life and make their judgment, but then I also realize that as a pastor the way I express my faith is a witness, and I express my faith by the way I live, by the way I deal with adversity." ...[Unlike some] Montgomery doesn't set aside the scriptures dealing with disability and healing. "As a pastor, I believe scripture is the heart and core of the word of God, and in the Presbyterian church the scripture is central," she says. "Therefore if it's in the scripture, people are going to have to struggle with it." Her issue isn't with what scripture says anyway, but how it has been interpreted over the years, and that's changing. "People who have lived with disability and who have listened to the church for decades and centuries are now saying to the church, No! There is another set of lenses to look at scripture by—look at the scriptures through the lenses of those of us who have the disability," she says. "Hear us, hear our experiences, hear our life stories, and hear how God is working through us." In the past few decades Christianity has made great inroads toward incorporating people who traditionally have been kept out of fully participating in their churches, but it still has quite a way to go when it comes to wheelchair users. For example, Montgomery says churches that welcome wheelchair users give themselves hearty slaps on the back, "but being welcomed still leaves me as a guest. There has to be more. We have to break the mold of what is understood as Christian community and rebuild it with disability being part of it from the ground up. We can't build the community and then say, 'Welcome, now you're an invited guest.'" Excerpted with permission from New Mobility (Dec. 2002) THE GOURD O wooden fruit of tangled vine you teach this doubting heart of mine the awesome greatness of the Lord with something simple as a gourd I used to find it hard to tell why people chose your crusty shell on which to chisel, paint, and draw while not considering as flaw a crooked neck, odd shape, or wart or blemishes of any sort Until I came to understand that once touched by an artist's hand even your least perfect part enhanced the finished work of art Brother Gourd, if this is true we've much in common, me and you for if we such beauty can behold beneath your peeling skin and mold what must the Master Craftsman see behind this shell I know as...me —Kathy Wuertz— FRANK'S CHURCH By Wallace Ward A few years ago Frank began to worship at our church. He had been in institutions for most of his life and was then living in a special home for the disabled. He hardly uttered a word but seemed to enjoy the worship services. One Christmas he and three friends from the same home came to our church's Christmas tea. During the service that followed, the caregivers came to pick up Frank and his friends. The friends went willingly, but Frank would not move and held his hands together, as in prayer. I offered a blessing, and he then left willingly. On the last Sunday of Frank's life he chose to sit with me during a Holy Communion service. When it was time to go to the Lord's table, I took Frank's hand and we received bread and wine together. Frank taught me about simple faith and God's all-inclusive love. From The Upper Room (Jan./Feb. 2000) A MATTER OF HEALING By Tom Gray There were two blind men sitting by the roadside. When they heard that Jesus was passing by, they shouted, "Lord, have mercy on us, Son of David!" The crowd sternly ordered them to be quiet; but they shouted even more loudly, "Have mercy on us, Lord, Son of David!" —Matthew 20:30-31 (NRSV) The blind and the lame came to him in the temple, and he cured them. —Matthew 21:14 (NRSV) From a New Covenant standpoint, healing was more than physical, more than a casting out of demons; it was also restorative. In a society where people received their "place," their standing in society, and their self-esteem from how others looked upon and treated them, healing also meant being restored, honored, and respected within some societal framework. I think the same could be said even today. Although we acknowledge that all humanity is "made in God's image," we have a hard time acknowledging that children born with alcohol or crack addiction, with spina bifida, Down's Syndrome, or with a mental illness that doesn't surface until they are in their 20's as being made in God's image too. These people also are to be accepted, restored, respected, honored, loved, and empowered, no less than those of us who think we are without any form of impairment. Can you imagine the dialogue when Jesus invited those who were lame and blind into the temple? I can just see those who were blind feeling their way along the walls, exclaiming, "so this is what the inside of the temple 'looks' like!" Or those who were lame remarking as they were carried in, "Wow! I had no idea it was so beautiful in here!" They had finally been allowed, invited, into the kingdom of God. Whether or not Jesus healed them physically, he loved, honored, and respected them enough to invite them where they had never been before, inside his Father's house. In so doing, he restored them societally as well. They were accepted and honored within the framework of a new society, a society that Jesus was building. Remember, prior to this the "afflicted" were not allowed into the temple. This raises the question: Who is in need of healing? In a "civilized" society capable of enacting the Americans with Disabilities Act, is there more to healing, acceptance, and honoring than creating curbcuts, braille signage, ramps, and handicapped parking places? I suggest there is—much more. Jesus' invitation of those who were blind and lame into the temple was an invitation into a society of acceptance, of honor, of grace. Not only were those who were blind and lame "healed" (i.e., accepted into his society), they were also accepted, honored, and respected within the society of his followers. They now had a people group from whom they received their sense of worth, their sense of "place." They were valued not by what they could or could not do but just because they existed as children of God, brothers and sisters of Christ. They were seen through the eyes of the Holy Spirit within the existing body of Christ. In a sense, the body of Christ was healed as well. The members of the body were required to put aside their pre-conceived notions of what and whom the kingdom of God was made up. Their old concepts of acceptance, of societal honor had to die and be resurrected as the capacity to see value in all of God's created people. "The kingdom of God is at hand" proclaimed both John the Baptist and Jesus. It is time we as the body of Christ today acknowledge this "kingdom-nowness" and stop counting ourselves among the crowd who ordered the blind men to be quiet. It is time for us to seek healing for ourselves and ask that God give us the ability to not only see but respect, honor, and love into our kingdom society those that "the crowd" devalues. Then and only then will healing take place. My prayer is that we be part of the kingdom that is at hand and the foreshadow of the kingdom that is to come. I pray that we be a people of shalom. I pray that we allow God to put to death our old value system and allow God to resurrect in us a new society, one where there is no Greek, no Jew, no male, no female, no slave, no free, no able-bodied, no disabled, no one that is beyond the acceptance and grace of God. Abridged and adapted from Tom Gray's website www.n2clay.com. Gray, a potter by profession living in North Carolina, has a young son with cerebral palsy. WALKING WITH GOD THROUGH PARALYSIS By Pamela Hale For the first 12 years of his life, Richard Daggett was an average boy who loved playing sports, riding his bicycle, and playing with his father's golf equipment. "I never really excelled at team sports," says Daggett, who lives in Downey [Calif.]. "I did, however, enjoy track and field events. I was a very good runner, and could hurdle and long jump pretty well for my age. My favorite sports activities were roller skating and bicycling." But more than anything, Daggett, now 63, loved to travel with his family. "Our family had always liked to go camping," says Daggett. "What I enjoyed most about traveling was seeing so many beautiful things." All aboard, with trailer in tow, the family would travel the United States. "Many times we wanted to go to a certain place and we would deviate and say, 'Let's see where this road goes,'" he says. After a few years, Daggett's life took a dramatic change. One morning, soon after his 13th birthday, he awoke in agonizing pain. "I really didn't know what it was. I just knew I was in a lot of discomfort," he recalls. "It was mostly bone aching. I had no other symptoms. When I bent forward it would really hurt." After several medical tests the diagnosis came: He had polio. Within days, the active teenager, who still didn't understand the seriousness of his condition, was completely paralyzed. "I don't remember having any fear. I was apprehensive, of course, and I knew they were doing some kind of procedure on me," he says, speaking about having a tracheotomy. "Psychologically it wasn't so tough because I didn't really know what it was. I just thought I'd get better and that I'd be back to school soon." Unfortunately, that was not what happened. Daggett would never return to school the same. "I knew I was paralyzed at the time, but it took about six weeks before I really had a clear concept that this was going to be a long-term struggle," says Daggett. "I never had a fear that I was going to die, which is something that could have happened." ... One thing that helped Daggett through his struggle was his membership in Downey United Methodist Church, which he joined at age 10 in 1951. Since then, he has remained an ever-present, ever-participating parishioner. "I was brought up in the church. It's a very welcoming, encouraging atmosphere," he says. "I depend on that. It would be very difficult if someone said you can't associate with those people anymore." ...Along with serving as Downey United Methodist's historian and on the [California-Pacific] Conference Commission on Archives and History, Daggett gives his time at Rancho Los Amigos National Rehabilitation Center in Downey, where he was treated for polio as a child. He also leads a polio survivors group that meets at the hospital. "I didn't have the stamina to work at a full-time job so I volunteered. I think we are put here on this earth to help others," he says. "I sympathize with people who are feeling down, but if you are always feeling down you have to do something to get out of the 'woe is me' attitude." He credits his parents, who both died in 2003, with building up his self-esteem, his confidence, and his faith in God. "I've been with my parents since I was born. [Polio] was probably a lot more stressful for my parents than for me," he says. "I think my attitude toward what was going on was helped a lot by my parents. They never said, 'Poor little Richard.' They taught me to face life and get on with it." Although many of his dreams have never materialized, Daggett continues to live and serve. "There are many things I'd like to have done: build my own house, get married, have kids," he says. "Socially my disability was tough." Despite the disease, Daggett has remained faithful to God, his church and community. "God, I believe, is a very loving God. I don't believe this was any kind of punishment," he says. "I think that my vision of God is somebody who is compelling me to go out and help other people."... According to Daggett, his strength comes from helping others and from serving God. "I don't want people to get the impression that everything is rose-colored glasses. Everybody has trouble, but it's a part of life," he says. "I am a person who has a disability, but I am not the disability," he says. "I would like to think I'm a nice person. Just one of several billion people on this planet going down their path." Abridged from a reprint in the Rancho Los Amigos Post Polio Support Group Newsletter (July 2004); originally published in the Long Beach, Calif. Press-Telegram (April 23, 2004). I AM DISABLED AND... LORD, your prophet says that in the restoration you will gather those who have been cast off and those who are mobility impaired and will make of them the faithful and abiding ones from whom a strong nation will come and that we will all walk in your name forever and ever. Affirmation #10 based upon Micah 4:5-7 (NRSV) by Ken Tittle and Mariposa Ministry and Mariposa Online. ROLE MODEL Named "2000 Mother of the Year" by the National Multiple Sclerosis Society, Cyndie Swafford says, "I'm thankful for my disease because it helps me better serve the Lord." A member of First [United Methodist] Church of Dayton, Tenn., and mother of three, Swafford was diagnosed in 1998 with a rapidly progressing form of multiple sclerosis (MS). Since then, she's had frequent attacks for which she must take medication and be hospitalized about every eight weeks. Yet her MS won't stop her from being a positive role model. Swafford leads a local MS self-help group and heads up the local National Multiple Sclerosis Society chapter. "The Lord took me out of my comfort zone so that I could show empathy to others in similar situations and be a more helpful servant for the Lord," she says. "I view my MS as a compliment from the Lord. Because of it, I've been able to grow closer and be more dependent on God and our family has become closer as well." —Heather Peck Stahl— From Interpreter (Nov./Dec. 2000). Stahl, who lives in Nashville, Tenn., is a free-lance writer and editor. When we walk to the edge of all the light we have and face that step into the darkness of the unknown, we must believe that one of two things will happen: there will be something firm for us to stand on—or we will be taught how to fly. —Anonymous— HONOR ROLL OF APPRECIATION We thank the following people or organizations whose gifts of time and/or money have made possible the publication and mailing of Wings: Linda Ahnell Jill Halley Margery Chapman Alan & Virginia Clark Lucille Fleming John Henker Nell Hong Ruth Sciumbato Fred & Jessie Fahnestock Rev. Ed Hoffman Rose Heller Rev. Kimball & Pam Coburn Vera B. Bergen Paul & Cay McCracken Norm & Helen Stockwell Ilene Carpenter WINGS: A non-official, non-profit quarterly newsletter published for, by and about United Methodist adults with disabling conditions FOUNDER/EDITOR COMPUTER LAYOUT/GRAPHIC DESIGN: Jo D'Archangelis Correspondence: Send all correspondence—including feedback, original writings, items from other sources, and changes of address—to Jo D'Archangelis, Editor, at Mailing Address: 592 West Ammunition Road, Apt. 1, Fallbrook, CA 92028 Telephone/Fax: [760] 723-2668 (please call before faxing) E-Mail: jodarlis@aol.com E-Wings: Two e-mail versions of Wings are available for those with vision impairments and computer "reading" devices, those who have difficulty handling paper and print pages, those who live outside the USA, and those who just prefer computer viewing: (1.) A strictly e-mail version in unformatted text without graphics, and (2.) A formatted version with color graphics available to those able to open attached files in MSPublisher 2000 format. E-mail Jo D'Archangelis at jodarlis@aol.com to request either, or both, of these versions. Wings Online: Four issues of Wings—Fall 2002, Winter 2003, Spring 2003, and Summer 2003—in their entirety may be accessed at www.cal-pac-ccdm.org/. Selected articles from back issues of Wings 1995-98 may be accessed at www.mariposa-ministry.org. Donations: Most of the funding for Wings' publication and mailing comes from reader donations. There are no subscription fees. If you think Wings is worth it, please make a check or money order payable to the "Fallbrook United Methodist Church" (or "FUMC") and mark it "Wings Newsletter." Mail it to the church address below. Basic Angel: $6-$14 Major Angel: $15-$24 Super Angel: $25-$49 Mega Angel: $50-$99 Awesome Angel: $100 or more Church Address: Fallbrook United Methodist Church, 1844 Winterhaven Road, Fallbrook, CA 92028 Church Telephone: [760] 728-1472 Church Fax: [760] 728-7433 Church E-Mail: FUMC1887@tfb.com