That All May Worship: An Interfaith Welcome to People with Disabilities

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2 That All May Worship An Interfaith Welcome to People with Disabilities I N T E R F A I T H D I S A B I L I T Y A D V O C A C Y C O A L I T I O N The American Association of People with Disabilities ~ 2013 H Street, NW, 5th Floor ~ Washington, DC 20006

3 That All May Worship Faith is a common thread among people of all backgrounds. Eighty-three percent of Americans identify with a religion. Everyone has the right to be welcomed in the House of God of their choice. Disability should never be a barrier to inclusion. Twenty years ago the first edition of “That All May Worship: An Interfaith Welcome to People with Disabilities” was published by the National Organization on Disability (NOD). The authors, Ann Davie and Ginny Thornburgh, created a guide that would help transform congregations of all faiths into places where children and adults with disabilities are welcomed, honored and enjoyed. Ginny was then working at NOD as Director of the Religion and Disability Program. Since then, 70 thousand of copies of “That All May Worship” have been sold. “That All May Worship” eases the job of removing barriers to the full participation of people with disabilities in congregations and seminaries. There are the more obvious barriers of architecture and communications as well as barriers of attitude and unexamined thinking. In 2009, Ginny moved to the American Association of People with Disabilities (AAPD) where she directs the Interfaith Initiative. More and more it has become clear: “That All May Worship” needed to be made available in an online format - free of charge. We are proud to offer an updated electronic edition of this popular guide. We hope it provides ideas for you to ponder, answers to your questions and hope to your concerns.

4 T H A T A L L M A Y W O R S H I P The Rev. Dr. Harold H. Wilke was a pastor, teacher, writer and advocate for people with physical, sensory and mental disabilities throughout the world. By his enthusiasm, self- acceptance, grit and twinkle, he provided an unforgettable role model. He challenged all, with and without disabilities, to heal the divisions among God's children. He called for religious communities to proclaim that people with disabilities are welcomed and needed in the House of God. Dr. Wilke had a distinguished career in four areas of service: Dedication to Harold H. Wilke the Church, rehabilitation medicine, teaching and government. Ordained as a minister of the United Church of Christ, Dr. Wilke served on the faculty at Union Theological Seminary in New York and lectured at many other seminaries. He directed the Healing Community, which promoted The Rev. Harold Wilke awareness about access to a life of faith. He published numerous books and receives ADA signing pen articles, including "Creating the Caring Congregation," a widely read book in the toes of his foot from for congregations moving to integrate people with disabilities into the faith President George H.W. community. Bush on July 26, 1990. Harold Wilke was a founding director of the National Organization on Disability (NOD). He inspired the authors of this handbook and countless others to identify and remove the barriers that prevent people with disabilities from achieving their full potential. Dr. Wilke lived in Claremont, California until his death in February 2003. He and his wife Peg, also deceased, were the parents of five adult sons.

5 T H A T A L L M A Y W O R S H I P Introduction ... 2 ... 3 An Interfaith Approach Affirmation ... 4 Attitudes about Disability in the Religious Community ... 5 Getting Under Way ... 7 How Shall We Begin? ... 7 Affirming Language 8 ... Create a Disability Awareness Committee ... 9 Pivotal Role of the Religious Leader ... 11 Interfaith Litany for Wholeness ... 12 Congregational Hospitality 13 ... ... 13 Hospitable Weekly Services ... Training for Ushers 14 That Transportation: Getting to the House of God ... 15 ... Religious Education 16 All May ... 18 Members at Home Welcoming People with Disabilities ... 20 Worship Introduction ... 19 Mobility ... 21 Welcoming a Person Who Is Blind or Has Low Vision ... 23 ... Welcoming a Person Who Is Deaf or Hard of Hearing 24 Mental Health ... 26 ... 28 Developmental Disability Learning Disability ... 30 ... 32 Chronic Illness Care for Caregivers ... 34 Who are the Caregivers? ... 34 Relieving the Routine of Long-Term Care ... 35 ... 36 “If your faith had been stronger”...and other things not to say Proclaim Progress! ... 38 “It’s You I Like!” ... 39 Appendix 40 ... “And a little child shall lead them...” ... 48 “The Lord is my shepherd...” ... 49

6 T H A T A L L M A Y W O R S H I P Introduction The purpose of this handbook, "That All May Worship," is to assist congregations, national faith groups, student groups, chaplains, and seminaries in welcoming people with disabilities. The handbook is interfaith in scope and concerns people with all types of disabilities. The foundation of the House of God is weakened for all if barriers of attitude, communication or architecture prevent people with disabilities from participating fully in the worship, study, service, and leadership of their congregation. "That All May Worship" is a step- by-step "coaching manual" that enables congregations to identify and remove these barriers. Among Those Who Will Find the Why Religious Congregations Need Coaching Handbook Helpful Many Americans with disabilities have spiritual needs that are not being met. They cannot even enter the People with any type or combination  church, synagogue, meetinghouse, mosque or of disabilities: long-term or temporary, temple of their choice. Or when they do enter, they physical, sensory, psychiatric or may be unable to negotiate stairs or narrow intellectual; apparent or not apparent doorways. Some find print too small to read, sound Local Congregations  systems that are inadequate, bathrooms they cannot Seminaries, religious colleges and  use or an atmosphere that is hostile. universities, national faith groups Historically, people with disabilities have been  Christians, Jews, Muslims, Hindus, "cared for" at home or in institutions, in a Buddhists, and all who respond to God’s paternalistic way. When architectural or program love through inclusive worship and service planning has been undertaken, they have generally to others not been invited to contribute. Times have changed for the better! There are, in fact, lay and religious leaders, with and without disabilities, who are creating inclusive religious communities across America. Some take forthright measures and thoughtfully improve their buildings and programs. In so doing, many people come to recognize the gifts that people with disabilities bring to the congregation. 2

7 T H A T A L L M A Y W O R S H I P T H A T A L L M A Y W O R S H I P An Interfaith Approach Many people of faith, from every religious persuasion, are finding the need to examine disability based on their understanding of God as Creator and Sustainer of life. The writers, editors and supporters of "That All May Worship" believe that God does not send disability. Rather, God is with us in the adversities of life, just as God is with us in the joys and triumphs of life. God loves us with an everlasting love and is aware of our needs, fears, anxieties and hopes. God’s Spirit Motivates It is God's spirit that moves us to pray, especially in times of pain, sorrow and loneliness. God's spirit removes the attitudes that isolate people. And, God's spirit motivates a congregation to be affirming, inclusive and welcoming. This handbook is a resource for all. Because words so often add to the barriers among people, considerable thought has been given to selecting helpful terms. For example, "congregation" refers to the people of any worshiping community. In the same way, "religious leader" refers to a pastor, priest, rabbi, imam, reader, minister or lay leader who serves on a vestry, session, board of readers, committee or council. For those congregations that have already begun to welcome people with disabilities, our hope is that this guide will affirm progress and add new ideas. For those who, in the past, have felt overwhelmed by the task, may the handbook build the confidence needed to transform their congregations into communities where all may praise God, all may grow, all may serve, all may be served, and all may worship. 3

8 T H A T A L L M A Y W O R S H I P T H A T A L L M A Y W O R S H I P Affir mation As God's creations, we are fashioned uniquely, Each endowed with individuality of body, mind and spirit To worship freely the One who has given us life. Each of us has abilities; each seeks fulfillment and wholeness. Each of us has disabilities; each knows isolation and incompleteness. Seeking shelter from the vulnerability we all share, Claiming our promised place in God's Household of Faith, We are transformed by invitation, affirmation and love. In grateful response, we... Worship and serve God, the source of hope and joy; Celebrate and serve one another, rejoicing in our diversity; Transform and serve the world, until we become a Community which reflects God's Oneness and Peace. Let the House of God be open to all who would enter and worship "For my house shall be a house of prayer for all people." Isaiah 56:7 4

9 A T T I T U D E S A B O U T D I S A B I L I T Y I N T H E R E L I G I O U S C O M M U N I T Y Attitudes About Disability in the Religious Community This We Believe! If there are barriers of attitude, communication or architecture for anyone, the foundation of the House of God is weakened for all. Every person is created by God, each is loved by God, and none should be diminished by another, even by unintentional actions or words. God may see "wholeness of spirit" where our imperfect vision may see only "brokenness of body or mind." Rather than being a burden, shared need and vulnerability should be recognized as the "glue" of a supportive community. Under distracting surface traits, there is the essential person created by God. Fortunately, God does not use intelligence or "rate of growth" to measure faith. God knows our abilities and our potential. God longs for us to respond lovingly with all that we are, and to be all that we can be. God frequently works through the unexpected! We need to listen, persevere in spite of inconvenience and remain open to creative solutions and opportunities. This We Know! Let’s Face It! Accidents, diseases and birth conditions Many people are uncomfortable with occur that demand dramatic and taxing people who look and act "different.” As a changes. The individuals and families may result, people with disabilities are often experience intense disappointment, loss, ignored, isolated or rejected. When the financial burdens and anger. Fortunately, response grows out of pity, the person with for some families the resulting the disability feels patronized and responsibilities bring out new talent, diminished and does not necessarily react compassion and vision. Never forget: A with gratitude. How much better to regard disability may be one automobile ride, one someone primarily as a person with unsteady stepladder, one overheated stove, abilities, and only secondarily as someone one high fever or one stroke away. If we who may need assistance to use those don't have a disability now, we surely may abilities. have one before we die. 5

10 A T T I T U D E S A B O U T D I S A B I L I T Y I N T H E R E L I G I O U S C O M M U N I T Y Keep Thinking! k before you speak," the old adage goes. But what if our thinking is unexamined or "Thin stereotypical? Everyone, at some time in life, has attitudinal disabilities which affect relationships, including:  apprehension  insensitivity  awkwardness  self-centeredness  embarrassment  paternalism Fortunately, many have learned by effort, luck and experience that people with disabilities are more like us than unlike us. We all have similar needs, wants and fears. We share our humanity. Sometimes we can compensate for problems by ourselves; other times we need family and community support to be ourselves. We Have Naysayers Among Us! Some say: "Of course, we'd be glad to have 'the Finally, remind the naysayers that: disabled' come to worship, but we don't seem to have "It's no more accurate to generalize about any of 'them.' If they are not coming, they must not the attitudes of people with disabilities want to come." from having met one or two, than it is to generalize about people without Others say: "Wait a minute! I tried being nice to disabilities, having met one or two." those folks. They have an attitude! They don't want my help. They're downright rude sometimes, and some are aggressively unpleasant to be around. Why invite trouble?" To confront the naysayers, draw upon faith, “Allah does not judge according to knowledge of people and common sense. your bodies and appearances, but Reply by saying: "Think about what may have He scans your hearts and looks into happened in the past to the person with a disability your deeds." who is trying to worship. Perhaps he or she was treated thoughtlessly by a religious leader or by Prophet Muhammad someone with good intentions but little sensitivity. Bitter feelings may last a long time. Guilt and confusion, anger and disappointment are often covered by pretending not to care. We all do it!" 6

11 G E T T I N G U N D E R W A Y Getting Underway How Shall We Begin? Many of us have disabilities that are visible. Others have disabilities that are not apparent. Some disabilities are physical or sensory, and others are intellectual or psychological. Some disabilities are temporary, although severely limiting while present. Others are permanent, but need not be fully limiting. Just as every family has at least one person who requires extra support and understanding, so too, in every congregation there are already people who have been accommodated. Adjustments have been made for Mrs. Green, who has cataracts; for Mr. Rosenfeld, who has a heart condition; or for the Smiths, whose son was in a serious diving accident . This Is a Great Start! Next look around for other members who may have been overlooked. They may be attempting to hide their problems by infrequent attendance or by quietly enduring discomfort. Be assured that they are paying a great price, psychologically, and perhaps spiritually. 7

12 G E T T I N G U N D E R W A Y Affirming Language People throughout the country are becoming aware that to live with a disability should mean to live in a supportive community, not hidden away in painful isolation. Because of this, they are also changing their language to show respect for persons with disabilities rather than labeling them like objects. Appropriate language and terminology is in evolution. "People-first Language" refers to the principle that the person is primary, the disability secondary. Language should affirm rather than diminish. Listen to the affirmation in this announcement: "Worshippers with disabilities may request assistive devices," rather than, "Disabled worshipers may request assistive devices." Note, too, that a person "uses a wheelchair" just as another person "uses" legs. The person is not "wheelchair bound" nor "confined to a wheelchair." language habits. "Politically correct" disability The following defined words are language is often presented in an overly frequently misused: oppressive way. As a result, people without A permanent physical, sensory or Disability:  disabilities, but with good intentions, may decide intellectual impairment that substantially that trying to affirm and include people with limits one or more of a person's major life disabilities isn't worth the effort. activities, including reading, writing and other aspects of education; holding a job; and Consider these comments... managing various essential functions of life A college senior using a wheelchair is out for such as dressing, bathing and eating. dinner with his girlfriend. The waitress looks at A barrier society places on the  Handicap: her and asks: "And what will HE have?" person with a disability. "I'd much rather have someone deal with me directly, maybe even say the wrong thing, than to People-first Language: say nothing at all. Words I can handle. Being Thus, one could say, "The stairs in that ignored is tough!" building will be a handicap for John, who uses a "Listen to the straight questions of children about wheelchair," but not, 'John is handicapped and my chair. They're great! They want to know what can't use the stairs.” Certain words and phrases happened to me, how fast I can go in the chair, are no longer acceptable. Among these are how it works, what I can do with it, and whether "crippled," "crazy," "retard," "deaf and dumb," I hurt. They're into real questions! Adults at the "wheelchair bound," "homebound," "shut-ins," church coffee hour clam up, look the other way, "victim," "invalid" and any categorization act embarrassed and try to shoo the children beginning with the word "the," such as "the away." disabled," "the blind," "the deaf" or "the mentally retarded." "It's ten times easier for me to buy a pizza or beer than to get into my synagogue." NOTE: People with disabilities should acknowledge sincere efforts to change old 8

13 G E T T I N G U N D E R W A Y Create a Disability Awareness Committee For any congregation, national religious organization, or seminary to make long lasting changes, a planning structure will be needed. Enlist a group of committed people, with and without disabilities, and create a Disability Awareness Committee or an Inclusion Committee. Select Participants Carefully  Give the Committee status by asking the religious leader to sign a letter inviting members to serve.  Get the backing of the congregational governing board.  Invite, as Committee members, people who have:  various types of disabilities  a family member with a disability responsibility to plan and lead worship   influence in making policy  professional skills such as therapists, psychologists, and physicians  responsibility for managing the building  skills in carpentry, contracting or architecture  responsibility for educational curricula, especially special education skills  experience in fundraising  responsibility for community outreach  skills in writing and communicating. Overview of Committee Responsibilities Each meeting and activity planned by the Committee will broaden the understanding of the participants who influence others in the congregation. Committee members will become bolder about taking action. After a time, additional people with disabilities will join the Committee and it will become known as a safe place where hurtful stories may be told. 9

14 G E T T I N G U N D E R W A Y Additional Agenda Items for the Possible Agenda Items for the First Committee Committee Meeting Consider policies and practices which  Divide into small subgroups so individuals  could be viewed as discouraging to have ample opportunity to exchange ideas. someone with a disability. What about  Discuss experiences within the worship, social and educational activities, congregation that may be creating barriers and outreach? What about camping for people with disabilities and for their opportunities for children and youth? families.  Divide the list of barriers and problems  Take time to examine the moral dilemma by type. present when a congregation excludes or does not seek out those with disabilities.  Refer recommendations to the Reflect on such questions as "What is it to appropriate congregational authority be human?" "What is God's role in such as the session, council, vestry, suffering?" "What binds people together deacons, trustees or building committee. in community?"  Strategize about fundraising. Ideas should  Make lists of access problems encountered range from urging the high school youth by someone with physical or sensory group to sponsor a needed program, to disabilities who is trying to enter or use inviting families to contribute money for the building. a ramp or enhanced sound system in honor or in memory of a family member. Long-range Considerations for the Committee The Committee will need both short-term and long-range strategies. Making changes at one point in time does not necessarily answer the need forever. Devices get broken, well-intended adjustments may prove to be inadequate, and new requests are made that are valid. The Disability Awareness Committee can be an informed and pro-active support group, known in the congregation for its ability to make changes on behalf of children and adults with disabilities. Its very presence will serve to assure members and visitors who seek an accepting atmosphere for worship, education and service. 10

15 G E T T I N G U N D E R W A Y Pivotal Role of the Religious Leader Religious leaders have a unique opportunity to be role models when they demonstrate a vibrant interest in the lives of children and adults with disabilities. Even if they have not yet been personally touched by disability, they can lead their congregations into new ways of thinking and acting. Consider these possibilities:  Learn more about the various disabilities and chronic illnesses present among members. Consider what special pastoral care may be needed and train members of the congregation to assist in offering spiritual, moral and physical support. Use affirming language when referring to persons with  disabilities.  Urge the hiring of qualified people with disabilities to be religious leaders, music directors, staff, and custodians.  Reveal, in appropriate settings, personal experiences with illness or disability-related crises which have affected faith development. Encourage religious educators to seek out curricula for all ages,  with thoughtful content and multi-sensory teaching strategies.  Provide a training session for ushers since they are usually the first people to greet and welcome a newcomer. Ask people with disabilities to assist in the training!  Be attentive, in difficult fiscal periods, to the tendency of committees to let access problems slip down on committee agendas. Encourage creative fundraising and become known as an advocate for individuals with disabilities in the congregation.  Remind those who nominate and appoint congregational leaders to include members who happen to have disabilities.  If lay readers usually participate in worship services, ensure that members with disabilities are also invited. Arrange participation in ways that de-emphasize differences from other worship leaders. See that microphones are adjusted, and that the place of reading is appropriate.  As a counselor, be available to people with disabilities and their family members. Listen for their strengths and their valuable perspectives on congregational life. Help them find their place of belonging.  Plan liturgies, sermons and stories for children which affirm that each person is created by God, loved by God and accepted, as is, by God.  Turn to Interfaith Litany on Wholeness on page 12 which has been well received by many congregations. 11

16 G E T T I N G U N D E R W A Y Interfaith Litany For Wholeness Leader: Let us pray for all God's people. For people who are blind and cannot see, and for those who can see but are blind to people around them, Response: God, in your mercy help us touch each other. Leader: For people who move slowly because of accident, illness or disability, and for those who move too fast to be aware of the world in which they live, Response: God, in your mercy help us work together. Leader: For people who are deaf and cannot hear, and for those who can hear but who ignore the cries of others, Response: God, in your mercy help us respond to each other. Leader: For people who learn slowly, for people who learn in different ways, and for people who learn quickly and easily but often choose ignorance, Response: God, in your mercy help us grow in your wisdom. Leader: For people who have chronic illnesses for which there is no known cure or relief, and for people who live in unholy fear of developing a chronic illness, Response: God, in your mercy help us and heal us. Leader: For families, friends and caregivers who serve people with disabilities, and for those who feel awkward in their presence, Response: God, in your mercy help us see each other with your eyes. Leader: For people who think they are worthless and beyond your love, and for people who think they don't need your love, Response: God, in your mercy help us accept your love. Leader: For people who feel isolated by their disabilities, and for people who contribute to that sense of isolation, Response: God, in your mercy change our lives. Leader: For all the people in your creation, that we may learn to respect each other and learn how to live together in your peace, Response: God, in your mercy bind us together. All: AMEN Written by: The Rev. Kate Chipps Adapted by: Ginny Thornburgh 12

17 C O N G R E G A T I O N A L H O S P I T A L I T Y Congregational Hospitality Everyone, with or without disability, should be welcomed into the House of God with courtesy and thoughtfulness. By anticipating the particular needs of those with disabilities, the atmosphere and conveniences are frequently improved for all. Even subtle changes make a positive difference. Hospitable Weekly Services  Print regular announcements of the following type, describing the accommodations that are available:  The congregation has a variety of resources available. These include large print hymnals and prayer books, large-print Bibles, large-print and brailed bulletins, and audio loops. Please speak to an usher if you need some assistance. Everyone is welcome to attend all congregational activities and to participate in our  religious education programs. Audio tapes of previous services are also available. If anyone has questions or needs assistance, please call the office.  Choose bulletin language with sensitivity. For example, remember the feelings of those with limited mobility and allow options. Use "Stand or Remain Seated" or "Kneel or Remain Seated" instead of phrases like "Congregation Stands" or "Congregation Kneels."  Consider planning a special Sabbath/Sunday service with disability as the focal theme of worship. Ask members with a range of disabilities to take leadership roles, appropriately demonstrating their various abilities.  Such a service celebrates differences, encourages openness and reduces misunderstanding. However, this once-a-year event should not substitute for year-long mainstreaming. People with disabilities should be fully involved in every aspect of congregational life. 13

18 C O N G R E G A T I O N A L H O S P I T A L I T Y Training for Ushers Ushers are usually the first sign of hospitality in the congregation. Because they are so visible, their gracious welcome to people with disabilities puts everyone at ease. Usher training should be carefully planned, in consultation with people with disabilities. A motivating part of this training is to ask them and their companions to share relevant, personal stories of what causes people to feel welcome, or not welcome, as they enter the House of God for worship and study. Ushers Extend Congregational Hospitality: Ask about preferred location for seating.   Seat a new person, especially one with a disability who arrives without a companion, with members who have so agreed ahead of time.  Offer audio loops, large-print or brailed bulletins, and large print prayer books and hymnals.  Keep mechanical devices in good repair by asking users to report on their effectiveness.  Station someone near heavy swinging doors to assist those with limited mobility. What do you say when you meet a person with a disability? How about: "Hello"? 14

19 C O N G R E G A T I O N A L H O S P I T A L I T Y Transportation: Getting to the House of God Transportation can be a major barrier for someone with limited mobility or low vision. By identifying transportation as an essential service, a concerned congregation can seek out and assist members and visitors who have:  Life-long or temporary disabilities  Hidden illnesses or age-related disabilities  Budget limitations and, thus, no car To provide personal choice and control, when possible, give the person with a disability a list of willing drivers. She or he may then make the transportation arrangements. Depending on the number of volunteers and financial resources, the transportation program can:  Provide a van with a wheelchair lift and a pool of dedicated drivers. Arrange neighborhood carpools serving the congregation, and nearby congregations if  worship times coincide.  Prearrange assistance for the person with disability who calls ahead and asks to be met at the car. Reserve parking places with extra room for easy and safe boarding near the ramped  entrances.  Budget for accessible taxi pickup.  Station someone near the door to assist persons in and out of cars.  Recognize and thank, publicly, those who regularly drive others to the church or synagogue. "A ramp is not enough." - Rev. Harold Wilke 15

20 C O N G R E G A T I O N A L H O S P I T A L I T Y Religious Education A Teaching Reminder To: Religion Teachers in Churches, Synagogues, Temples, and Mosques From: A Child with a Disability  Please don't worry about me. I'm a lot tougher than you think.  Most of my needs are just like those of other children even though my physical or mental development is different.  Give me what you naturally give to all the children: your love, your praise, your acceptance and, especially, your faith.  Help me to have a successful experience in your class. If you thoughtfully plan a variety of activities, I will always find at least one thing I can do well.  Encourage me to do things for myself, even if it takes me a long time.  Try to maintain a regular routine so I will know what to expect.  Like other children, I remember instructions best if they are short and clear. Let me work out my own relationships with the boys and girls in the class.   Give me opportunities to help others. Written by: Carole Carlson Ginny Thornburgh Adapted by: 16

21 C O N G R E G A T I O N A L H O S P I T A L I T Y Religious Education Religious education is the way a faith tradition is passed down from generation to generation. It should be taught by people who are trained and committed, using appropriate materials and curricula. Integrating children and adults with disabilities into the congregation's regular education program is usually preferable. In some instances, however, special education teachers may be found to lead a self-contained class or to assist a student with disability within a mainstream class. Remember that community is built through shared experiences, not isolated ones. Thus, it is vitally important to have worship, education and social activities that include everyone, young and old, those with and without disabilities. During class and in large congregational gatherings, it is important to respect any food allergies which children and adults have, offering a choice of food and beverages. 17

22 C O N G R E G A T I O N A L H O S P I T A L I T Y Members at Home Be sure that members considered to be "shut-ins" have not, in fact, been "shut-out." Many who cannot easily attend services long to participate in meaningful activities. If it is clear that someone is forced to be at home, a special outreach, beyond an occasional pastoral visit, can be extended by lay members:  Offer a communion service with several people in attendance, at the home on a regular basis.  Offer the opportunity to say Kaddish at home following the death of a loved one.  Deliver audio or video tapes of services.  Think of ways a person at home might assist in the work of the congregation. Examples include: Using computer skills   Making telephone calls  Writing for the newsletter  Invite a person who must stay home to be on a committee, in a study group or in a prayer group. Hold the meeting at that person's house.  Investigate conference call and speakerphone devices as ways of including someone in meetings or worship services, while remaining at home.  If the congregation provides sponsors for new members, offer the responsibility to persons who have been longtime members but now spend most of their time at home. "The eternal God is your dwelling place, and underneath are the everlasting arms." -Deuteronomy 33:2 18

23 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Welcoming People with Disabilities Introduction There are 54 million children and adults with disabilities in America. They differ in strengths and weaknesses, abilities and needs, as much as individuals in any group differ. The House of God should welcome every one of them! Review, with welcome in mind, the personal and congrega- tional actions offered below. Widening Congregational Hospitality Improving Personal Interactions  Use multi-sensory approaches to involve all  Talk directly to the person with a disability, not listeners when preaching, teaching or making to the nearby family member, companion or presentations. Everyone will benefit. interpreter.  Encourage people with disabilities to Offer assistance but do not impose. Allow a  participate in the full range of congregational person to retain as much control as possible, experiences. doing things for himself or herself, even if it Follow announcements of general invitation  takes longer. with personal invitations and arrangements for  Ask the person with the disability about the transportation. Persons with disabilities may best way to be of assistance. Personal not really believe the invitation is "for them" if experience makes him or her the expert. they have had disappointing or isolating  Do not pretend to understand if the speech or experiences in the past. ideas of the person are unclear. Request,  Nominate people with needed skills to be politely of course, that the person clarify. contributors and leaders in positions of Continue speaking to the person rather than responsibility. Never decide for someone with a asking a companion to answer for him or her. disability that getting to meetings or doing the Work to control reactions of personal  work is "too hard." Invite first, then leave it up discomfort when someone behaves in an to them. unexpected way or looks somewhat different.  Be sure that people with disabilities are asked to Try to see the wholeness of spirit underneath plan and review progress on both programmatic and overcome the tendency to turn away or and architectural changes. ignore the person with the disability.  Provide note-takers for meetings. Develop transportation to religious and social  activities for people with a wide variety of disabilities. 19

24 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S  Develop a job placement program and support group for those in the congregation who are out of work. Two- thirds of people with disabilities, who are of working age and want to work, are unemployed, and many who work are underemployed. When the congregation provides affirming support, it empowers the person’s job search.  Be aware that accommodations for one group can cause difficulty for another. For example, discuss the proposed placement of ramps and curb cuts with members who have poor vision and could trip on edges and grading. Support the families of those with  disabilities for they experience stress and isolation. (Please see the section, Care for Caregivers, pages 34 to 37).  Locate and support local chapters of organizations which offer services to people with disabilities and their families. Such services may include recreation, transportation, respite care, advocacy, financial assistance and health care. Many have learned that... A person who hears less may see more One who sees less may perceive more One who speaks slowly may have more to say A person who moves with difficulty may have a clearer sense of direction 20

25 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Mobility Mobility limitations are the most visible of all disabilities. Of the 54 million Americans estimated to have disabilities, 3 million use wheelchairs. There are also millions of others who use walkers, canes, braces, crutches, or scooters. Causes of physical disability range from accidents to genetic conditions or diseases. Aging increases the chance of broken bones and deteriorating strength. Fortunately, most congregations are already thinking about ramps, curb cuts and designated parking arrangements. These adaptations are also useful to movers of heavy equipment, shoppers with bundles and pushers of baby strollers. Attitudes can keep people out as easily as architectural barriers. Surprisingly, there are people who think someone in a wheelchair cannot hear, or that someone with cerebral palsy is not intelligent because speech is slow and labored. Often, when people who use wheelchairs participate in classes and social settings, they may find that people talk over their heads or behind their backs. One explanation, not an excuse, for such rudeness is that people may feel somewhat "guilty" that they are able to get around easily when the other person can't. Improving Personal Interactions  Sit, in order to be at eye level when talking with a person using a wheelchair or scooter. Do not move a wheelchair, crutches or walker out of  reach. Ask if assistance is needed.  Do not lean on the wheelchair or otherwise "invade" the person's space. When buffet or cafeteria lines cause inconveniences,  get suggestions and offer to carry the person's plate or tray. Founder of Joni and Friends Minis- in electric tries, Joni Eareckson Tada, wheelchair 21

26 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Widening Congregational Hospitality  ovide outside barrier-free access including Pr curb cuts, street level or ramped entrances, and  Think about room arrangements for all meetings, 32" doorways with adequate and level entry coffee hour gatherings or receptions. Is there space. Please see An Audit of Barriers, pages 40- clearance in halls? Is the meeting or eating table a 43. convenient height? Are there loose or curling Designate 12'6" wide parking spaces near the  rugs that will impede travel? Are there enough accessible entrances. chairs for people who tire easily?  Lower elevator control panels.  Set microphones at the appropriate height and  Provide an accessible source of water. If a location to be easily accessible. drinking fountain or cooler cannot be lowered,  Have someone available to open heavy doors. provide a cup dispenser beside it. Offer to provide a note-taker, if manual dexterity  Adapt a bathroom (which may be unisex) and  is limited. install grab bars, raised toilet seats, sinks at Have a supply of straws available for people who  appropriate levels, lever type faucets, towel have difficulty holding a cup, glass or can. dispensers and appropriately positioned mirrors.  Extend hand rails beyond the top and bottom steps, a feature helpful to those with braces, crutches, canes and walkers.  Install firm carpeting and reduce floor slickness. : The metal stall dividers in Note Shorten several pews so one or more wheelchair  most bathrooms represent a major users can fit into the main body of the barrier for people in wheelchairs. If congregation and not be conspicuous in the it is not possible to remodel aisles. Scatter these pew cuts throughout the immediately to include an accessible sanctuary to allow a choice of seating near stall, remove the metal walls companions. entirely, and surround the toilet  Build a ramp to the place of religious leadership area with a hospital curtain. This and to all areas in the congregation. temporary measure allows privacy  Move the location of any classroom that is and is easily accomplished. inaccessible to a student.  Contact the national faith group headquarters to check if there is a low-interest loan fund to assist local congregations in remodeling buildings for accessibility. 22

27 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Welcoming a Person Who is Blind or Has Low Vision All congregations include people with varying amounts of vision. Fortunately, there are ways that a person with low vision or no vision can be active in the worship, study, service, and leadership of the congregation. Improving Personal Interactions  To get a person's attention, speak the person's name. In a conversation group, identify people by name as each is speaking.  Do not pat a guide dog in harness. It is not a pet when on the job.  Feel free to use words such as "see" and "look."  When guiding, give verbal clues to what is ahead, such as steps, curbs, escalators or doors.  Inform the person when you are leaving. Widening Congregational Hospitality  Describe materials being distributed to a group that includes a blind person. Summarize information displayed on a screen.  Accept a guide dog in the sanctuary as you would any guide.  Produce bulletins and the words to hymns, litanies and prayers in large print. Provide brailled versions if requested.  Have available large-print hymnals, missals, Bibles and prayer books.  Make audio tapes of entire services, sermons, speeches or seasonal spiritual study guides.  Offer a volunteer reader service.  Improve sanctuary and hallway lighting, especially around staircases and other areas of potential difficulty for people with low vision.  Place brailled information plaques on elevator panels. 23

28 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Welcoming a Person Who is Deaf or Hard of Hearing Each congregation includes people, young and old, who are hard of hearing or deaf. They may read lips so well that they appear less deaf than they truly are. Indeed, they may understand only 80 percent of what is spoken, chanted or sung, but may be reluctant to complain. Knowing this, a congregation will want to replace poorly functioning sound systems and consider additional measures. Many people who are hard of hearing communicate through enhanced sound and lipreading. A person with partial hearing may also benefit from assistive listening devices (ALDs), such as an FM system. In FM systems, the speaker wears a small microphone which transmits sound to a receiver that is worn by the person who is listening. Places of worship should also consider installing Loop Systems, in which a loop of insulated wire carries sound to an amplifier or an individual’s hearing aid or device. This affordable and available technology provides hearing and compatible assistive listening, and should be installed in sanctuaries, classrooms, and meeting rooms to ensure full involvement in worship and study. Many people who are deaf prefer interpreted conversation using American Sign Language (ASL), Signed English or Cued Speech. Since ASL is a language with its own syntax allowing for the exchange of ideas on many levels, it forms the basis for what is known as the Deaf Culture. People who are deafened later in life rarely learn to sign fluently. They are best helped by assistive listening devices (ALDs) or by real- time captioning that is a professional verbatim instant speech- to-text translation service. Many deaf people prefer to worship in congregations which specifically serve people who are deaf. Others seek a mainstream religious community which is able to arrange for sign language, oral interpretation and real-time captioning of worship services and activities. This is particularly important for deaf parents who have hearing children and wish to worship as a family. 24

29 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Improving Personal Interactions To get a person's attention before speaking, tap on elbow and speak face to face.   Look at and speak to the person rather than the interpreter. The interpreter may be greeted privately but, when the interpreter is working, he or she is a transmitter for the person who is deaf, not a participant.  Speak at a moderate pace, clearly but without exaggeration.  Avoid covering the mouth while speaking. Beards and moustaches also make it harder to lipread.  Do not stand in front of a window or bright light, since it puts the face in shadow and makes lipreading more difficult. Do not pretend to understand if the speech of a person is unclear. Request that the person rephrase  until the point is clear. , available in all Communicate by telephone with deaf members at home by using relay services  states. Consult the telephone book for the local number or dial 711. Or you can ask people what communication tool they prefer, whether it be text message, email, or relay service. Widening Congregational Hospitality  Provide seating near speakers and interpreter. Usher the person to an appropriate seat. On important holy days, provide an interpreter and reserved seating in the main sanctuary. If there is  televised broadcasting of the service to overflow crowds, provide an interpreter in that room as well. Be sure that important announcements are also provided in print form. Remember to inform  someone bringing an interpreter of cancellations or any change of time or place.  Use pencil and paper to communicate when necessary.  Reduce background noise from radios, television sets and loud fans. Purchase assistive listening devices (ALDs) for large assembly areas and small meeting areas. ALDs are  systems which combine with a person's hearing aid to augment and clarify sound in a group setting. Examples are personal and group FM systems (using radio waves), infrared systems (using light waves) and hard wire systems (directly connecting the speaker and listener). The key to the success of ALDs is in the speaker's use of a lapel microphone which reduces background noise as it transmits the voice to the person wearing the hearing aid.  Install Loop Systems in sanctuaries and public spaces. There is a growing use of this assistive technology in congregations large and small.  Do a weekly check of batteries in listening devices. Encourage those who use equipment to inform someone if ALDs are not working properly.   Purchase a telecommunications device (TDD) for the church or synagogue office so that a deaf or hard of hearing person can call the staff and religious leaders. Advertise its availability. TDDs allow deaf and hearing people to talk to one another over the telephone lines using a small terminal with a screen and an abbreviated keyboard, something like a typewriter. A TDD may be purchased for under $300.  Encourage some members of the congregation and staff to learn American Sign Language, Signed English, and/or finger spelling as a way to increase the number of times the deaf person feels "at home" within the congregation. 25

30 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Mental Health A mental health condition can disrupt the way In some faith communities, unfortunately, a person thinks, feels and relates to other there are misinformed people who think that people. Because of this, the person may find it God punishes persons for spiritual flaws by difficult to cope with the ordinary demands of giving them mental health conditions. Relying daily life. Such conditions affect individuals of on passages taken from sacred texts, some all ages, and they occur in many American religious leaders and congregation members families, across all boundaries of income, consider mental health conditions as evidence education, race and ethnicity. of the presence of "evil." This adds further pain and isolation to the person and his or her The exact causes of the many mental health family members. In welcoming a person with conditions, including for example depression, mental health issues: schizophrenia, and bipolar disorder, are not known. These are brain-based conditions that  Try to remain noncritical when are not caused by poor parenting or other encountering unusual behavior, giving social causes. They are treatable. With responses that are supportive of the person. appropriate medical care, a person with a Cultivate the ability to listen.  mental health condition can lead a life of  Ask the person how the congregation might be supportive. quality. Offer either community or private  People with mental health issues agree that the intercessory prayer. hardest part of living with their situation is the Make referrals to professionals, when  stigma and lack of understanding they appropriate. encounter from others. Since their disabilities  Do not deny that the person has serious are not apparent, it is hard for others to adjust difficulties that may continue a long time. to unexpected and "different" behaviors. Sadly,  Offer choices of opportunities and tasks most people have limited knowledge about appropriate to the person's ability. mental health conditions and may believe some  Be sensitive to the fact that physical touch, of the myths about them. Because of this, they such as a friendly pat, a hug or squeeze of the may not know what to do or say, and may turn hand, affects people differently. Some away in their uncertainty. appreciate the caring, but others find touch There are also people in all congregations who threatening. experience episodes of poor mental health. Be prepared for anger that has no obvious  Their poor mental health is often due to basis. Try not to take it personally. Avoid environmental stresses and traumatic life lecturing, arguments, blame and acts that experiences. Professional counseling and a increase tension. caring congregation will help them experience  Remember that the person or family may a better quality of life. be in need but may be reluctant to ask for . assistance 26

31 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Widening Congregational Hospitality  Understand that a large portion of people who are homeless have mental health conditions. Adapt social outreach programs to their needs. Advocate on behalf of those with mental health conditions as they seek housing, employment, and  social activities.  Provide opportunities to learn about mental health issues which are frequently misunderstood. As members of the congregation begin to understand these conditions, ways to offer compassionate hospitality will be discovered and put into practice. Improving Personal Interaction When a person... has trouble with reality; is fearful; is insecure; has trouble concentrating; is overstimulated; becomes easily agitated; sounds unclear, has poor judgment; is preoccupied; is withdrawn; keeps changing plans; believes delusions; has little empathy; has low self-esteem; Then... be simple, truthful. stay calm. be accepting. be brief, repeat. limit input. allow person to change subject or location. do not expect rational discussion. get attention first. initiate relevant conversation. keep to one plan. ignore, don't argue. recognize as a symptom. stay positive. Adapted from "Bridgebuilder," Alliance for the Mentally Ill, Orange County, CA. 27

32 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Developmental Disability A developmental disability is intellectual and occurs at or before birth, in childhood or before the age of twenty-two. These lifelong disabilities include intellectual disability, spinal cord injury, epilepsy, sensory disabilities, cerebral palsy, autism, and traumatic brain injury, as well as other conditions resulting in limitations. This legal definition of developmental disability dictates who may or may not be served by certain government programs. The term "developmental disability" is complicated by the fact that some people with cerebral palsy, autism or traumatic brain injury may have advanced intellectual skills but limited speech or physical function, while people with intellectual disabilities have slower rates of learning and limited capacity for abstract thinking. Seventy percent of people with developmental disabilities have an intellectual disability. Children and adults with intellectual disabilities mature at a below-average rate and experience difficulty in learning, social adjustment and economic productivity. Intellectual disability is neither a disease, nor is it mental health condition. Many self-advocates with this particular disability feel that the previous labels "retarded" and "retardation" are hurtful and should no longer be used. People who become mentally disabled through accident or illness as teens or young adults are often reluctant to seek needed services because of the label. In consideration of these feelings, the Association for Retarded Citizens of the United States changed its name in 1991 to "The Arc." There are multiple causes of developmental disabilities, including genetic disorder, birth trauma and accident after birth. Among societal ills which can result in intellectual disabilities are parental alcohol and drug abuse, poor prenatal care, malnutrition, child abuse and lead poisoning. Each person with developmental disabilities should be offered early and lifelong training and encouragement to be as independent as possible. Most children and adults with these disabilities can learn to live, work and socialize with a small amount of caring supervision. Others require more assistance. In the past, people with developmental disabilities, especially intellectual disabilities, have often been treated as less than fully human. Today, religious and lay leaders understand that people with developmental disabilities who have been lovingly included in family and community are able to experience a meaningful relationship with God and have much to offer any congregation. It is not wise to assume that a person will "get nothing" from attending services. Faith is not measured by how fast it develops, nor are we fully aware of the depth and breadth of what anyone of us gains from worship. When we restrain someone with developmental disability from participating, we may be more worried about our own potential "embarrassment" than we are concerned about his or her religious experience. 28

33 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Improving Personal Interactions  Treat adults with developmental disabilities as adults, not as children.  Talk to the person directly, not through a companion or family member.  Be patient. Give instructions slowly, in short sentences, one step at a time.  Allow the person to try tasks on his or her own, to make mistakes, take a longer time and to persevere. Do not impatiently take over doing things for the person which she or he can do alone. Widening Congregational Hospitality Provide opportunities for participation in all congregational activities.  Find concrete ways for the child or adult with intellectual disability to assist before, during  and after the worship service. Some possibilities include: passing out programs and bulletins; filling the water glass for the religious leader; collecting materials left in pews after services.  Find appropriate ways to increase knowledge and understanding among the members of a congregation, especially among peer groups of children.  Provide "hands on" experiences in social and teaching settings.  Offer an older child with developmental disability the opportunity to help the teacher of younger children with cutting, pasting, reading and straightening the classroom.  Assist people with developmental disability who decide to participate in group activities such as retreats, camping programs, conferences and assemblies.  Sponsor a self-advocacy program such as "People First" or "Speaking for Ourselves."  Integrate students with developmental disabilities into regular classes, whenever possible.  Develop a relationship with a group home in the neighborhood. Activities can take place in the congregation's building or out in the community. Possibilities include everything from worship to hockey games! Don't overlook home improvement projects at the group home such as painting a room, weeding the garden or sewing new curtains. 29

34 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Learning Disability A person who has one or more learning disabilities has constant interruption in the basic, brain- centered processes that affect listening, thinking, speaking, reading, writing, spelling and sometimes calculating. The person has average to above- average intelligence, although learning is slower or different in the affected areas. This not apparent disability is often not diagnosed. The frustrations experienced can result in low self-esteem and uneven performance, and frequently in behavioral difficulties. A person with a learning disability does not have a developmental disability, mental health condition, or communicable disease. Some symptoms of learning disability include:  short attention span  poor memory  difficulty following directions inability to discriminate between and among numbers, letters, and sounds   poor reading ability  problems with eye-hand coordination A Mother's Prayer O God, help me now. My soul is weighed down with this burden. My heart aches for my child. Sometimes I wish I could wrap him in my arms and flee away from the taunts and accusing jeers of thoughtless classmates, away from the pressures of evaluations and examinations. Envelop us both in your healing arms, dear God, and bind our wounds. Carry us by faith beyond the pain of these days. Be our refuge. Amen. - Anne Sheppard 30

35 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Contrary to popular myth, it is not possible to "grow out of” a learning disability. It is lifelong. Some people with these learning differences miss social cues, do not learn easily from experience, and are physically and socially immature. Indeed, it is often said that the young person is "eighteen going on thirteen," or about five years less mature than his or her peers. In addition, there may be an uneven ability to retain information resulting in failure in school and in the workplace. The child or young adult with learning disabilities frequently experiences repeated failure in schooling and in the workplace, painful encounters in daily social life and continuing tension at home. Feeling impatient and somewhat inadequate themselves, teachers, supervisors, peers, parents and siblings may have difficulty understanding "why he won't try harder!” It is not hard to see that the accumulated frustrations experienced by someone with a learning disability may lead to emotional problems. The religious congregation can be a welcoming haven of acceptance and affirmation for children and adults with learning disabilities, free from the rejection and extreme stress they experience in most other places. Improving Personal Interactions Widening Congregational Hospitality Build confidence and skill by helping to   Help teachers and parents to examine develop interests and the opportunity to expectations within the faith tradition which share them. relate to educational achievement. Be direct and specific in conversation and  Provide a personal teacher and advocate for  in teaching. Give instructions simply. the child or young teenager who is being Use teaching techniques appealing to  baptized or confirmed, or is joining the church or synagogue. different senses.  Find creative ways to adapt the teaching of Be patient and flexible.  Hebrew, Latin, Greek or other languages Have realistic expectations.  important to religious expression. This is, of Help the person understand how the  course, essential in preparing a young boy to disability is connected to social interaction have a Bar Mitzvah or a girl, a Bat Mitzvah. with peers, families, teachers and employers.  Adapt seminary curricula for those with learning disabilities studying to be priests, ministers, rabbis, and imams. 31

36 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Chronic Illness Every congregation has members who have one of the many chronic illnesses, which persist for months or years and generally interfere with an individual's everyday ability to function. The effects of the particular illness may not be apparent, camouflaged until the most acute stages begin. Thus, few people in the congregation may know that the person is ill. For others, periodic "flare ups" may require hospitalization and result in some of the disabilities described elsewhere in this handbook. Among the many types of chronic illness are HIV/AIDS, seizure disorders, environmental illnesses, diabetes, sickle cell anemia, cardiac conditions, gastrointestinal disorders, chronic fatigue, the many forms of cancer, arthritis, chronic back pain, lupus, osteoporosis, glaucoma, retinitis, cataracts and numerous other visual conditions. Question : Why would someone hide the fact of such an illness from members of the church or synagogue? Is it fear of rejection? The dread of pity? Answer: Yes. Previous negative experiences, even subtle or inad- vertent thoughtlessness, result in fear of further rejection. From the point of view of the congregation, if people do not really know how a disease is spread, they may think they can "catch" HIV/AIDS or epilepsy in casual social situa- tions. Feeling apprehensive and not understanding the ill- ness, they may avoid those whose behavior or appearance make them uncomfortable. As lay and religious leaders become more skilled in their interactions with members who have disabilities, they then become role models to others in the congregation. 32

37 W E L C O M I N G P E O P L E W I T H D I S A B I L I T I E S Improving Personal Interactions • Be sensitive to the possibility of hidden chronic illness, if a person repeatedly declines to participate in activities. Persist in efforts to find suitable avenues of involvement. • Accept their fears about the future. Sometimes apprehension about increasing dependency affects • motivation and willingness to join activities in the present. Invite the person to be part of the Disability Awareness Committee or Inclusion Committee. Planning • for others with disabilities may provide an atmosphere where self-acceptance grows. Widening Congregational Hospitality Include in congregational prayer and private intercessory prayer "those with chronic illnesses." In • other words, offer an atmosphere of support. • Make the congregation aware, clearly but tactfully, that some people with allergies or environmental illnesses are very sensitive to perfume, smoke and cleaning products. Severe respiratory distress can be triggered if the air is not clear. Living If we believe that we have no future, then it will surely be so. If we speak of our infirmities as a sentence of death, then our words will be- come reality. But so too, if we believe in our own value, plan for our own future and accomplish some of those things which are important to us, then our lives will be full, and happy and rewarding. Living with AIDS is no different from living without AIDS — unless we make it so. It doesn't matter how much time any of us have. It only matters what we do with it. There are no guarantees for anyone — for we are all part of the human condition. -Craig W. McHenry 33

38 C A R E F O R C A R E G I V E R S Care for Caregivers For each person with a severe disability, there is a circle of support made up of the primary caregiver and a group of family and friends. They share problems and challenges, as well as joys and successes. To be a caregiver, however, many must give up their own independence. They usually find, in return, little status in the eyes of society, and meager financial support is generally offered for their efforts. It is essential that the caregiver confer dignity, comfort and hope upon the person with disability, day by day, and not feel like a martyr. To do so, she or he needs multiple sources of personal affirmation. The congregation can be one of the places where the caregiver finds practical and spiritual support that can make all the difference. Who are the Caregivers? • Mother of a new baby with a severe, life-threatening condition, such as immature lungs • Grandmother raising the toddler of her drug-addicted daughter • Parent of a three-year-old with juvenile arthritis Newly divorced parents of a child with learning disabilities • • Siblings embar rassed by their brother with attention deficit disorder and hyperactivity • Mother of a junior -high-aged son who is hard of hearing • Father of a special education graduate not sufficiently trained to be employed • Parents of a teenager who is experimenting with alternate lifestyles and drugs • Sister of a twenty-five-year-old man with traumatic brain injury • Mother of a recent college graduate with paraplegia and angry about dependence on family Husband of a • of multiple sclerosis young mother with a new diagnosis • Wife of a thirty-year-old man with depression who threatens suicide • Female friend of man with cancer • Fiancé of a young woman progressively losing sight • Wife of an alcohol-dependent executive, in denial • Parents of a middle-aged son with AIDS Companion of • mild a forty -six-year-old woman with intellectual disability • Son whose aging mother is deaf and financially needy • Wife of a retired football coach, suddenly quadriplegic of a man • Middle -aged daughter with Alzheimer' s disease living at home with developmental disability • Elderly parents of an adult son 34

39 C A R E F O R C A R E G I V E R S In all these and innumerable others, the parents, spouse, siblings, children and other situations, enor mous emotional and physical strain. Friends in a religious community can caregivers are under offer assistance at many levels by: affirming; shopping; sitting; laughing; lifting; driving; chatting; cooking; praying; listening. In biblical terms, all caregivers need a Sabbath , a time apart from the tasks of caregiving for congregations to renew energy and spirit, body and soul. This is an opportunity in order others over the long haul. to embody a faith that sustains Allow time away to accomplish personal • Relieving the Routine of and family business. Long-term Care Develop three or four congregational • Plan an occasional outing together, such • friends or families to provide care on an as shopping, a walk or a trip to the museum. alternating, regular basis so that the caregiver Have another friend from the congregation can be assured of evenings out and weekends provide the necessary care or companionship away. to make it possible. • Train young people in the congregation to be sitters for children with disabilities. • Send occasional notes, cards or flowers. • Make a quick phone call, especially to share an amusing anecdote. A sense of humor is an invaluable source of perspective and it needs to be nourished. • Be a friend. Have a non­judgmental attitude. Be available to listen. Be a source of interesting stories to "change the subject.” • Call and say, "I'm bringing a casserole tomorrow night. Is there anything you need at the market since it's on my way?" Don't call to ask, "What can I do to help? " Having to make suggestions is an added pressure. • Offer opportunities for caregivers to use their creative talents, such as decorating, gardening or arranging flowers. 35

40 C A R E F O R C A R E G I V E R S • Get the caregiver or the person with and other "If your faith had been stronger"... disability to make a list of specific tasks things not to say that would give pleasure or be helpful. Genuinely interested friends who do ask, How often people repeat time-worn phrases, with not a "What I can do to help?" may then select thought for the painful impact the words may have. Please, from the list. think before you speak. • Offer to be the driver one day a week NOT to Say: for trips to the doctor, hospital or rehabilitation center. "If your faith had been stronger, you would have been • Keep caregivers on the list for healed long ago." intercessory prayer. Pray that caregivers SAY: focus on the positive in each day; parents not be overwhelmed by difficult decisions "I don't know why this happened in your life. I really and daily management dilemmas; siblings hurt for you." develop resilience and insight rather than NOT to Say: bitterness and resentment. "If there is anything I can do, just let me know.” Enable caregivers to nurture their • spiritual lives by offering them rides to SAY: worship services and relief from caregiving "I'm taking my son to the zoo. Would any of your children tasks at home. like to come with us?" Encourage creative long-term planning • regarding care for the person with NOT to Say: disability who is aging. Help mobilize "There's always somebody who's worse off. Just think family resources, if such assistance is about that man in this morning's newspaper!" welcome, and suggest names of lawyers, physicians, insurance agents and religious SAY: leaders with problem-solving skills. "You have experienced an incredible loss. I am so sorry." • Support the family who must place a member in a residential care facility. Be NOT to Say: aware that several family members may "God must have had a reason for this tragedy happening experience guilt, shame and loneliness. to you and your family. But, God never gives us more than Provide counseling opportunities during we can bear." the decision-making period, during the initial weeks after the placement and when SAY: appropriate thereafter. "It's hard to understand what God is doing in this. I will Keep congregational ties with the • pray that you will feel God's sustaining love and comfort." person living in a residential care facility through visits, newsletters and other -Kathy Sheetz activities. 36

41 C A R E F O R C A R E G I V E R S After the Crisis Responding in the Crisis A month after the accident, sudden Some actions are most appropriate during illness or death, the primary caregiver the initial stages of a crisis caused by an settles into the "rest of my life." accident, sudden illness or death. Fatigue, discouragement and Organize a group to prepare well- • depression begin to overcome the balanced meals. Freeze some meals and energetic response to the first stage of deliver others for the immediate family crisis. This is the time that some people spending long hours at the hospital. appreciate a second wave of meals, Offer to be present during some of • errand runners and friendly callers. the long hospital waiting periods. Others may welcome an occasional social invitation. Still others may Suggest, and offer to arrange for, an • prefer opportunities for gradual answering service so messages can give reinvolvement in the life of the updated news and people may leave community. For some, it is meaningful expressions of concern. for the pastor, priest, rabbi, imam, or Offer to be the person at home or at • close friends to acknowledge the the office who is the information link anniversary of an accident or death with others who are concerned. with a call, note or visit. Beatitudes for Friends and Family Blessed are you who take time to listen to difficult speech, for you help us persevere until we are understood. Blessed are you who walk with us in public places and ignore the stares of strangers, for we find havens of relaxation in your companionship. Blessed are you who never bid us to "hurry up," and more blessed are you who do not snatch our tasks from our hands to do them for us, for often we need time — rather than help. Blessed are you who stand beside us as we enter new and untried ventures, for the delight we feel when we surprise you outweighs all the frustrating failures. Blessed are you who ask for our help, for our greatest need is to be needed. -Author Unknown 37

42 P R O C L A I M P R O G R E S S ! Proclaim Progress! At some point, lay and religious leaders should publicly declare that people with disabilities are welcome in the congregation. Such a declaration is a celebration of progress toward the goal of becoming a fully inclusive congregation. This welcome should not be delayed until every desirable change has been made, every program is in place or every attitude has been examined. In local newspaper advertisements  Use the accessibility logo.  Indicate accessible public transportation.  Advertise ASL interpreted services. On outside signs and publicity posters  Use the accessibility logo. Include the words "ALL ARE WELCOME."  The phrase now has new meaning.  Provide directions to accessible entrances on doorways that are inaccessible. On inside bulletin boards or signs Remind members about all special accommodations, classes and opportunities.   Indicate locations of accessible restrooms. In congregation newsletters and bulletins  Print a list of accommodations available to people with disabilities.  Run a story or celebratory announcement about new classes, accommodations or opportunities. Issue periodic open invitations to join the Disability Awareness Committee. Publicize meetings.  38

43 “ I T ’ S Y O U I L I K E ! ” It’s You I Like It's you I like, It's not the things you wear, It's not the way you do your Hair — But it's you I like The way you are right now, The way down deep inside you — Not the things that hide you, — Not your toys They're just beside you. But it's you I like, Every part of you, Your skin, your eyes, your feelings Whether old or new. I hope that you'll remember Even when you're feeling blue That it's you I like, It's you yourself, Fred Rogers was a composer, writer, It' s you, it's you I like. television producer, Presbyterian minister, president of Family Communications, Inc. © 1970 by Fred M. Rogers and, above all, a friend of children. He All Rights Reserved cared deeply about children and the healthy emotional growth of families. Fred Rogers was known by children as the host of "Mister Rogers' Neighborhood," a public television program which reached millions of families each week. One of the many songs Mr. Rogers sang on his show is "It's You I Like." This simple tune summarizes the affirmation we all seek. For despite our weaknesses and disabilities, we long to be accepted and loved, as we are . This is the unconditional love which God offers us, young and old, with and without disabilities. 39

44 A P P E N D I X Appendix An Audit of Barriers Many people with disabilities have had negative worship experiences in the House of God. They have met subtle thoughtlessness and outright rejection. Many have lost the will to worship and they question the relevance of faith. When buildings are structurally inaccessible, people with limited mobility cannot enter. When the word is only spoken, people who are hard of hearing are denied some or all of the message. When announcements are in print form only, people with poor vision miss opportunities. When general invitations are issued and members with mental health conditions or another chronic illness are not personally invited, they may assume they are excluded. When leadership appointments are made and each person selected appears to be physically or mentally "perfect," the person with a disability may doubt his or her own usefulness. As the people of God open their minds to such dilemmas, they will begin a process of opening doors, eyes, ears and hearts to the wonders of a shared life of faith. They will care enough to remove the barriers of attitude, communication and architecture. is there that love cannot break?" Mahatma Gandhi barrier "What Attitudinal Barriers The toughest barriers for people with disabilities to overcome are the attitudes of those who have inadequate information about disability. For members of the faith community to become knowledgeable, they must befriend people with physical, sensory, mental health, and intellectual disabilities. Thereafter, including them in the life of the congregation will be a great deal easier. Reflect about attitudes evident in the congregation toward people with disabilities, and use this list as a springboard for discussion. • Are persons with disabilities welcome to worship with us? • If not, what are we doing wrong? • Are there members with not apparent disabilities? Do we recognize the gifts and talents of people with disabilities and are they fully involved in the life • of the congregation? • Are people with disabilities given opportunities to serve others within the congregation and in the outreach programs? • Are positions of leadership offered to individuals who happen to have a disability? How does the congregation respond to religious or lay leaders who acquire a serious disability ? • 40

45 A P P E N D I X Architectural Barriers Communication Barriers When beginning to make the architectural and Communication is the interchange of thoughts, structural changes necessary to welcome people ideas, feelings and facts. There is a barrier to communication when the content of a message is with disabilities, start with things that can be not understood. Various devices and sensitive accomplished relatively easily. Get underway! actions can help compensate for visual, auditory, What is needed are visible signs of change, not or intellectual disabilities so that every person can just lengthy committee meetings and hand- absorb the message of God's love. wringing. It is true that aesthetic and historic Use this list to review communication preservation considerations must be taken into possibilities within the congregation. Check the following: account as welcoming congregations make plans to adapt their buildings. And some of these Services and messages presented verbally and □ adaptations will be expensive. It is not an visually, dramatically and musically acceptable argument, however, to delay because of Large-print prayer books, hymnals, missals and □ "how few of 'them' we have." In God's realm, the Bibles number of users is not relevant! Brailled materials □ Sermons or entire services on tape □ Plan a fundraising strategy that involves Amplifying sound system, in good order □ so-rich. everyone, young and old, rich and not- Sign language interpreted services Think about everything from bake sales and □ benefit dramas to expensive physical changes □ Adequate lighting Real-time captioning □ made in loving memory of a deceased relative. In addition, remember that some religious groups □ Audio loops and other assistive listening grant low-interest loans for renovations. devices (ALDs) □ Printed sermons Begin by consulting members of the □ A TDD in the office of religious leader's study congregation and their relatives who are A religious education program which □ architects, contractors, carpenters and plumbers. intentionally plans experiences for children, Their skills are needed and this is their day to young adults and older adults with disabilities shine! Don't forget to consult, in every phase of Educational resources in the library about □ evaluation and planning, persons who are users of various disabilities wheelchairs, walkers, crutches and canes. By not □ A comfortable way for people with disabilities doing so, many churches and synagogues have within the congregation to offer suggestions made well-intended but inadequate, even for removing barriers without being made to wasteful, changes. It goes without saying that all feel like "complainers" new construction or remodeling should meet current, local access codes. 41

46 A P P E N D I X Doors and Doorways Parking and Paths Door openings 32 inches wide or more □ Curb cuts to sidewalks and ramps to entrances □ □ Doors which can be opened by exerting 5 Pathways at least 48 inches wide, with a slope □ pounds of pressure of no more than 5 percent □ Doors which can be opened electrically by the □ Level resting space around doors, 5 x 5 feet push of a button □ Marked accessible parking spaces close to □ Lever handles or push bars accessible entrances Worship Space Ramps and Stairs □ Seating spaces with extra leg room for people Ramps 36 inches wide, minimum, extending □ using crutches, walkers, braces or casts one foot in length for every inch of rise, a 1:12 ratio. Thus, a ramp replacing an 8 inch step Scattered spaces or "pew cuts" for the users of □ must extend 8 feet. wheelchairs who prefer to be seated in the main body of the congregation, not in the □ Handrails on at least one side of the ramp, 32 front or back of the sanctuary and not in the inches above the surface aisles. These pew cuts can easily be made by □ Protection over ramps from rain and snow, and shortening several pews by 36 inches. non-skid surfaces Area with lectern and microphones accessible □ Stairs with handrails on both sides, 32 inches □ to those with mobility limitations above the step, and extending a foot beyond Choir area allowing wheelchair users to □ the top and bottom of the stairs participate Stairs with rubber treads □ □ Adequate lighting directed on the face of the □ Slightly raised abrasive strips on top steps to speaker for those who read lips, as well as warn people with limited sight where stairs adequate general lighting in the sanctuary begin Bookstands or lapboards available for those □ unable to hold prayer books, hymnals or Bibles 42

47 A P P E N D I X Towel dispensers no higher than 40 inches □ Bathrooms from the floor □ At least one accessible bathroom, ideally one on each floor. These may be unisex, as in an □ Lever-type faucet controls and hardware on airplane or a home. doors One toilet stall 36 inches wide, with 48 inches □ Water fountains clear depth from door closing to front of Water fountain mounted with basin no more □ commode and a 32-inch door that swings out than 36 inches from the floor, easily operated Ideally, a 5 x 5 toilet stall with a 32-inch door □ from wheelchairs that swings out and two grab bars, one As an interim measure, a supply of paper cups □ adjacent to the commode and one behind the mounted next to the water fountain, or a commode, to facilitate side transfer from a water cooler wheelchair Elevators and lifts □ A hospital or shower curtain providing □ Elevators or chair lifts to ensure access to the privacy for wheelchair users, if metal dividers sanctuary and all major program areas are removed and other renovations are not possible at the moment Controls placed at 54 inches or less from the □ elevator floor, reachable from a wheelchair A sink with 29 inches of clearance from floor □ to bottom of the sink Brailled plaques on elevator control panels □ A handrail on at least one side, 32 inches from □ the floor Don’t hide your ramp under a bushel! -The Rev. Paul Feuerstein 43

48 A P P E N D I X Architectural Design for an Accessible Sanctuary See legend on next page. 44

49 A P P E N D I X General Notes Legend 1. The floor plan shown is for a Lutheran A: Covered pathways leading to portico church. It can be adapted to serve other faith and other buildings communities. B: Entry area with glass walls and space 2. All exterior entrances into the building for overflow seating or for assembling and interior room entrances have doors that participants in processional are 36 inches minimum in width. C: Wheelchair accessible cabinets and 3. All exterior pathways are level with the pamphlet racks door sill of each entrance. Men's restroom with wheelchair D: 4. All access ramps within the sanctuary are accessible facilities designed to blend into their respective areas. Wheelchair accessible water cooler or E: 5. The main seating area offers more than 15 water fountain shortened pews, scattered, so that users of Women's restroom with wheelchair F: wheelchairs can be seated within the main accessible facilities body of the congregation, not in the aisles. G: Choir robing room 6. Aisles are designed for ease of wheelchair H: Main seating area for approximately maneuverability. 350 people 7. Scattered pews are set with amplification I: Bride’s preparation room devices. J: Choir area with ramps to all levels K: Wheelchair locations within the main seating area and choir area L: Sanctuary with ramp access to each level, including areas for individual readings Access ramps with a slope of 1 inch M: height : 12 inch length 45

50 A P P E N D I X Americans with Disabilities Act The Language of the Law The Americans with Disabilities Act (ADA), signed into law by President George H.W. Bush on July 26, 1990, raises to new heights the American commitment to equal opportunity for all citizens. By this legislation, individuals with disabilities are guaranteed that employment or promotion will not be denied because of their disabilities, if they are otherwise qualified. The law also promises accessibility to transportation services and public accommodations such as restaurants, museums, libraries, daycare centers, doctors' offices, hotels, private schools, retail stores and parks. Churches, synagogues and other religious organizations or entities controlled by religious organizations are exempt from the ADA, except for the employment provisions. However, if a church or synagogue rents space to programs funded in part or in whole by state or federal dollars, the funded program will be required to conform to other nondiscrimination laws. In addition, if a congregation rents space to an independent daycare center, the daycare center is required to comply with the ADA. The Spirit of the Law The spirit of the ADA is very much in keeping with the standards by which most congregations worship and govern. Indeed, the ADA is an enactment in our time of Biblical precepts concerning love of neighbor and respect for all of God's children. The Americans with Disabilities Act reflects the principles of love and justice which are the underpinnings of a life of faith. In addition, congregations need to be aware of the ADA because they often serve as community centers offering meal delivery programs, book groups, Alcoholics Anonymous meetings and daycare for young and old. Furthermore, it is within congregational purposes and to their advantage to welcome people in many stages of physical ability and disability. Changes in access ramps, doorways, bathrooms and water fountains will benefit all users of the buildings, not just people with disabilities. For Specific Assistance For further assistance on the precis e legal requirements of the ADA, readers may call the United States Department of Justice: (800) 514-0301 (Voice) (800) 514-0383 (TDD). Please visit the website at www.ada.gov 46

51 A P P E N D I X Acknowledgements We wish to thank the W.K. Kellogg Foundation of Battle Creek, Michigan which funded the updated seventh edition of "That All May Worship" upon which this online version is based. Among hundreds of written documents, the following publications were especially helpful and were used with permission: Becoming God's Accessible Community (Mennonite Central Committee, Akron, Pennsylvania, 1990); Called to Care (Office for Church life and Leadership, United Church of Christ, Cleveland, Ohio, 1991); Creating the Caring Congregation by Harold H. Wilke (Abingdon Press, Nashville, Tennessee, 1980); Helping People with Serious Psychiatric Disorders: Suggestions for Caring Congregations by Diane Engster (Silver Spring Presbyterian Church, Silver Spring, Maryland, 1990); Opening Doors: Ministry With Persons With Disabilities (National Catholic Partnership on Disability, Washington, DC, 1987); Pathways to Partnership: An Awareness & Resource Guide on Mental Illness by Jennifer Shifrin (Pathways to Promise: Interfaith Ministries and Prolonged Mental illnesses, St. Louis, Missouri, 1990); Students Who Are Deaf or Hard of Hearing in Postsecondary Education by Ann Davie (HEATH Resource Center, American Council on Education, Washington, DC, 1990); and ... Who Makes People Different by Carl Astor (United Synagogue of America, New York, New York, 1985). The Architectural Plan for an Accessible Sanctuary was designed by John M. Scott, AlA, and Richard M. Takach, ASID, of Largo, Florida. They are members of the Interfaith Forum on Religion, Art and Architecture (IFRAA) of Washington, DC. We are grateful for the hospitality and staff support of the New York Avenue Presbyterian Church, Washington, DC. 47

52 A P P E N D I X "And a little child shall lead them.” -Isaiah 11:6 48

53

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