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by Mel Dugosh, Parent, Pipe Creek, Texas
In 1995 I attended a conference sponsored by C.A.M.P., Childrens Association for Maximum Potential, and moderated by the editor of Exceptional Parents Magazine. The conference objective was to improve relationships between parents of children with significant disabilities and medical and educational professionals. After ten years of parenting one child, I admit that I had become very cynical that those relationships could do anything but worsen.
The workshop was dry and predictable with the professionals extolling their expertise and the parents participating little. Suddenly a male parent stood and said, "Hey, lets talk about whats really bothering me ... we cant even go to church as a family anymore ... our child isnt welcome there. When we find a church that wants all of us ... this is where we are going to go."
The meeting went haywire, with the parents all speaking at once ... out loud and amongst themselves, each of them sharing a story of exclusion at the hands of a church. I said nothing; this hardened parent had dissolved in tears, silently grieving the church I had lost. The church that had asked us to stand in the lobby during a song because our son was disruptive. The church that was not able to provide child care in the nursery because of his special needs. The church I took my son to for healing, and they "cast the devil out of him." This huge famous church that showcased its deaf ministry and occasionally proudly handed over its pulpit to an evangelist with cerebral palsy, had no room for our tiny lovable son, Chris, who was born with blindness and deafness but sees and feels what most of us cannot. Our son Chris, who without hands somehow manages to touch us with warmth each day.
It had been the ultimate rejection. The rejection that I had not allowed myself to even think about and it suddenly seemed that it was not that uncommon. For months after the meeting I wondered about other parents and their church experiences. Eventually, with the help of C.A.M.P. and their agencys commitment to the many aspects of the physical and psychological needs of both the child with disabilities and their entire family unit, I launched a very unscientific qualitative survey to discover if in fact other families with children like mine were finding a policy of exclusion in their community churches.
The research indicates that when a child with significant disabilities is born into a family their first initial contacts for assistance are within their immediate family, the medical community, and their church community. These crucial "first responses" to what the family may perceive as a crisis situation, seem to set the tone for their interactions with government and community resources that will follow.
The historical legacy of placing persons with significant physical and mental disabilities in institutions or segregated in their homes may be a contributing factor to the hostile atmosphere that some of the survey respondents found. They initially sought comfort and guidance in their local church community and were met with blame, accusation and rejection.
In several denominations, instances were reported where new families having a child with physical disabilities and/or mental disabilities with no previous advocacy training or experience with community inclusion heard doctrines of "retribution" and felt pressure to "repent" and "seek a healing" for their child. A parent responded, "I somehow felt that I must apologize to the congregation because my child with mental disabilities and an ongoing chronic illness, did not have a complete recovery, or even close, as if my faith wasnt strong enough to receive a healing from God for my child."
Results reported from these types of incidences yielded - emotional distress, anger at God, withdrawal from church and community, and reluctance to discuss these happenings.
It is not uncommon for parents dealing with difficult circumstances to keep their thoughts and emotional pain to themselves. Not saying anything or saying very little protects them against vulnerability. A parent remembers, "My sons Down Syndrome was not obvious in his appearance for the first few months after his birth. Our church was so large that many people did not know that my husband and I were dealing with the initial pain and shock of the news ourselves. The problem was that I wanted to continue keeping his Down Syndrome a secret. I wanted everyone to think of me as a happy and fulfilled new Mom and not feel sorry for me. While I continued this happy face, inside I felt as though I was surrounded by a huge dark cloud of despair and it was many months before I was even ready to face the reality, or even admit to anyone that there was a problem."
Parents that are not openly expressive and are not exhibiting sadness in more obvious situations can also be perceived by those in the church community as having already successfully dealt with their circumstances. A parent expressed his thoughts in this way: "I was alone those first few days after our child with disabilities was born. Friends and relatives came to visit my wife in the hospital, they hugged, talked to her and cried with her. Our pastor and his wife came and spoke to my wife; but he did not speak to me."
People may have difficulty getting through the stages of grief because they are not aware of the nature of those stages. These natural stages may contribute to the church communities inability to assess the situation and provide assistance. "After caring for my child with disabilities alone for many years I know that I need Gods strength to continue. I also know that I need the help of our entire congregation. How do I tell them now, that I alone, am not equipped."
Vague and undefined anger is common. Parents may become easily upset and frustrated and have no focus for their anger. These feelings of isolation and anger can be devastating. One parent described her feelings as, "...intense humiliation, guilt, condemnation, hopelessness, confusion, fear, lack of purpose for living, deep depression and despair, distrust for those in the medical profession, abandonment, and betrayal by God."
Many people were not aware of how their beliefs about God could relate to the birth of their child with mental and physical disabilities. Struggling with an unshakable image of God from their own past while coping with an overwhelming situation can be especially difficult. Parents dealing with these intense emotional issues need a safe and secure environment within their church community to explore their anger and other emotions, especially the anger directed specifically at God.
When a family reaches the point in the grieving process, in which they are able to accept their circumstances, they begin a tentative move in a positive direction. When the family no longer sees their childs physical or mental limitations as a source of shame or as something they must overcome and can accept that it is okay to be a person with disabilities, this is the beginning of advocacy efforts on behalf of their child and other children with disabilities for inclusion in all aspects of community life. A parent explains, "Our family is currently looking around, again, for a church. It is so difficult for us to find one where we feel that we belong. Sometimes I go scope them out by myself on Sunday, just to see if the church has others with disabilities and how they treat them. I am no longer willing to allow my child to be hurt by an uneducated church."
Once a parent of a child with physical or mental disability becomes empowered to advocate for their child within their church community, humanity cries out for a new vision. Inclusion spreads throughout the community as a whole as shown in this example from a parent: "At one time we wondered how our new baby daughter would suffer from having a brother who, because of his disability, would restrict her life and embarrass her in front of her friends. Those nightmares of the past will never come true! I now speak to other parents, professionals, Chamber of Commerce, school boards, churches, organizations and public officials. Im no longer ashamed, I have knowledge and confidence and I plan to continue my work in advocating for my son and others with disabilities."
If barriers of attitude, communication or architecture exist for anyone, the foundation of the House of God is weakened for all. Inclusion in the church community will become a reality when parents of children with disabilities and adults with disabilities determine that they deserve the opportunities to achieve whatever is possible despite the difficulties. "The church needs to provide the parishioners guidance on how to include children with disabilities with their dignity intact, in the church, as well as the community."
Americans with disabilities have the right to attend the church, synagogue, meeting house, mosque, or temple of their choice. However, this may mean negotiating stairs or narrow doorways, print media that is too small to read, inadequate sound systems, and bathrooms that are not accessible.
The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990. This sweeping civil rights law provided a national mandate for the elimination of discrimination against individuals with disabilities in employment, state and local government services, public transportation, public accommodations, and telecommunications. A religious entity, however, is defined under the ADA as a "religious corporation, association, educational institution, or society." Using this interpretation, church congregations, camps, church offices, and other church facilities fall within this ADA definition.
Religious organizations or entities, including places of worship, are exempt for any Title III public accommodation requirements of the ADA. Even when a religious entity carries out activities that would otherwise make it a public accommodation (for example, a restaurant, a place of lodging, a theater, a library) the religious entity is entitled with the exemption from the ADA coverage. If a church entity operates a public nursing home, day school, child care facility, and summer camp, those operations, again, are not subject to the ADAs public accommodation requirements. This also applies to religious institutions led by lay boards. The test is whether the religious entity controls the public accommodation, not who receives the services. However, a church facility operating as a profit-making, noncharitable institution does not qualify for the religious exemption.
A church can provide a daycare and avoid these issues by choosing to lease the space to a nonreligious organization that will operate the public accommodation. The tenant them becomes responsible for compliance with the ADA, not the church leasing the facility.
If a church service organization operates with assistance of federal money, the shelter will be required to be accessible to people with disabilities under section 504 of the Rehabilitation Act of 1973. Section 504 prohibits discrimination against persons with disabilities by entities receiving federal financial assistance.
The First Amendment provides, "Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof..." The Supreme Court has interpreted these words to mean that government entities - federal, state and local - must avoid activities which advance or inhibit religion. Under the Supreme Courts Lemon test, named for the case in which it was adopted [Lemon v. Kurtzman, 403 U.S.602(1971)], the federal government may fund a religiously-affiliated program that 1) has a secular or civic purpose; 2) has a principle or primary effect that neither advances nor inhibits religion; and 3) avoids fostering an excessive government entanglement with religion. The broad latitude afforded by the Lemon test for federal funding of churches nonsectarian social programs can allow for federal support for religiously affiliated programs in the areas of housing, child care, nutrition, health, inclusion, drug intervention and assistance for the poor.
An adult with mental disabilities expresses herself in this way: "Not only do people with physical disabilities get shunned, but people with [other] disabilities do as well. Many Mega Churches define your personal success by the job you hold or the social circles you fit into. Churches make a glaring and condescending spectacle of people who think differently than they. Many times it is assumed that we are stupid and are seldom called upon to fulfill meaningful roles in church life."
"In Austin, Texas, my former mega church, was called upon to bake cookies for a Christmas party at the Austin State Hospital. They flatly refused. This church is approximately two blocks from the hospital and has had no known ministry to a community that were truly its neighbors. The good news is that the church recently issued an apology. They have become interested in the folks over at the hospital and have begun to minister to them and welcome them into the congregation."
Many parents of children with disabilities report that they converted to different denominations or left churches with policies of exclusion to join churches with visible adult congregates with disabilities that had already begun paving the way to inclusion in that church community.
A parent with a child with mental disabilities describes his new church in this way, "Our church is represented by extremely diverse personalities and backgrounds. Yet we are united into a close knit group because of Gods gifts of help and hospitalities. God has blessed our congregation with many that need special accommodations and He has given us the tenderness to understand and provide for these needs."
Looking past impairment to discover the unique gifts and potential of those who live with mental and physical disabilities is a celebration of life. This celebration, rather than the segregation of diversities, allows for the threads of interaction to become reinforced into the fabric that holds the church community together. Repeating and patterning these actions can serve as an example to the surrounding communities increased awareness and acceptance of community inclusion.
In many communities the church is among the few viable indigenous social organizations committed to fostering the development of individuals, families and the community as a whole. There are, in fact, church leaders with or without disabilities, who are creating new inclusive church communities across America. Some have taken forthright measures and thoughtfully improved their buildings and programs. In so doing, many people have come to recognize the gifts which persons with mental and physical disabilities bring into the church community. A parent describes the programs in her church community, "Our church now has a Ministry for Special Needs with a council for fourteen people. We have a director of programs which coordinates the Sunday School programs. There are two special classes for children and one for adults. As well as mainstreaming for those higher functioning individuals. There is an interpreter for individuals who are deaf at worship and in Sunday School. We have plans for programming during family night activities on Wednesday evening during the school year, and our future goals include respite services."
"We also have an outreach for residents of several group homes and institutions in the area. We have coordinated transportation with congregates who live nearby. We recently contracted with a nonprofit agency to provide after-school care for children with special needs of elementary school age, and are hoping that some of these children will bring their families and become a part of our growing ministry."
As social injustices, ignorance and apathy are replaced with increased sensitivity and warm acceptance, the church community will begin to fully appreciate the contributions that persons with mental and physical disabilities present. In addition, their virtues of courage, patience, perseverance, and compassion can serve as an inspiration to all those in the community.
National Organization on Disability
Religion and Disability Program
16th Street, N.W.
Washington, DC 20096
293-5960 - voice and (202) 293-5968 -TTY
National Catholic Office for Persons with Disability
P.O. Box 29113
Washington, DC 20017
529-2933 - voice/TTY
Union of American Hebrew Congregations
Liheyot Advisory Committee
New York, NY 10021-7064
650-4075 - voice
Editors Note: You may contact Mel at 510-4495 or write to Rt. 1, Box 1416, Pipe Creek, TX 78063.
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