MIT.CAL Cooperative Disability Research

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As an adult who became disabled later in life (for details on my disability story, see Appendix A: Motivation for This Project — My Story), I discovered that I was no longer an asset to the local church. Instead, like many other disabled adults, I became a charity case. (Kenny, 2022). Prayers were offered, transportation was provided, and meals were delivered, but when I asked to return to the choir as a signing member rather than a singing member, I was told, “No. Some members of the congestion will find that to be distracting and offensive.” It wasn’t until later I learned that the person who would eventually become my interpreter was told the same thing.

I also broke both my legs at different times and required the use of a wheelchair. While the church I attended had spaces for wheelchairs and other mobility devices in the sanctuary, the spots were behind the pews for the non-disabled worshippers. When the congregation stood to sing, all I saw was the backs of the people in front of me. I could not see the platform or the words on the screen.

This project has grown out of my frustration trying to make it possible for me to participate in communal worship. I went from being an active participant to being an afterthought. I do not want others to experience similar obstacles to worship. As I began to look for ways to include individuals with disabilities in the church, I discovered that most of the published work in this area concentrates on individuals with disabilities who are under 21 years old. Intellectual and Developmental Disabilities among children and adults are the most frequently studied situations. 

Does the age-mod onset of disability affect attendance at religious services? We don’t know. We do that the Body of Christ is incomplete without the gifts, talent and presence of everyone. We also know that God’s at work through a multitude of churches and ministries sharing His love with adults with disabilities. We also know that as recently as 2010, an extremely limited data set suggests the burgeoning disability ministry movement hasn’t yet made a statistically significant impact upon church attendance among adults with disabilities. (Grcevich, 2013).

I have not always been disabled. It wasn't until my late twenties that symptoms began to appear of various physical problems that would eventually lead to my leaving the workforce, unable to hold a forty-hour-a-week position of any kind in my early fifties. It began with my left hip becoming increasingly painful to walk on, until one day I was unable to walk because of sharp pains. It took several years to diagnose the problem. Eventually, I was diagnosed with a form of arthritis (ankylosis spondylitis) that is inherited. It is an episodic disability that comes and goes. It is a rare type of autoimmune disease that causes arthritis in the spine. It's a lifelong condition that usually starts in the lower back. It can spread up to the neck or damage joints in other parts of the body (Braverman, J. 2024). In my case, it affected both my eyes and my digestive system. For years, I walked with a cane (sometimes two). I still have difficulties with bright lights.

About the same time, I was diagnosed with chronic migraines. Neither of these conditions affected my ability to work. I completed my PhD in Industrial Engineering and Engineering Management. I taught Industrial Engineering, Engineering Management, and Technology and Ethics for fifteen years. Then I became completely disabled. For some yet unknown reason, I lost the ability to speak above a whisper. Later, I broke both femurs (different accidents) and was confined to a wheelchair for several weeks each time; I graduated with the use of a walker and now require the use of a cane only occasionally.

This story is important because while I thought I was aware of the obstacles a disabled individual faced in daily life, I soon discovered I hadn't a clue. The issues I encountered in the church were even more subtle. The church had ramps and restrooms for individuals with mobility problems, but it wasn’t completely accessible.

The rows designated for users of mobility devices and their companions were placed at the back of a section of pews for non-disabled individuals. There was plenty of space to accommodate the individuals. The problem with the place chosen to provide space for these individuals is that when the congregation was asked to stand, I could only see the backs of the non-disabled individuals in front of me. I could not see the platform or the screens. This difficulty still exists in our newly remodeled sanctuary.

I attend a church that uses contemporary music with accompanying bright lights. Both the music and the lights can, on occasion, cause either sharp eye pains (commonly known as an ice-pick headache) or trigger a migraine. I have had to leave the service. There is no place in the sanctuary where the lights or the music is tempered. For other worshippers who have epilepsy, these same lights/music can trigger seizures. There is no place for me to go when this happens but home.

The loss of my speaking voice is, perhaps, the most difficult to deal with. For years, I had been a Sunday school teacher, Sunday School Superintendent, conference speaker, and choir member. Suddenly, I could do none of them. For a while, I didn't attend church because I could not participate. I would get phone calls (my husband fielded them because my voice was not strong enough to be heard) asking why I wasn't there on Sunday mornings. When told I could no longer speak (or sing), I was told I could either mouth the words or sit out the worship portion of the service. When I returned, I was faced with similar difficulties as recounted by Amy Kenny (2022) in her book. With good intentions, congregants wanted to pray for me. But what they wanted to pray for was that I would get my voice back. A choir member actually told me that when I was ready to get my voice back, I should see her. She would pray, and my voice would be restored. While I do believe in miracles, I also knew that my laryngeal nerve had been damaged during a medical procedure, and the likelihood that I would whisper for the rest of my life was very high. I politely asked her to pray for God's Will instead.

I began to learn sign language to participate in corporate worship. I asked to return to the choir as a signing member rather than a singing member. At first, I heard nothing back. One day, I stopped by the church and asked to speak to the music director about rejoining the choir. I was not only told "no," but I was also told that "members of the congregation found signing to be distracting and offensive." It was only ten years later that the church provided a sign language interpreter. 

The purpose of this project is not to debate the origins of disabilities but to confront the reality that many persons with disabilities face obstacles in the church environment. However, to understand congregations' and church leadership's responses toward individuals with disabilities, it is necessary to review three current theories of disability.

1. The Resurrection Body: Using Revelation 21:4 (God “will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”) as the basis for this view of individuals with disabilities, the premise is that there will be no disabilities in the New Heaven. As a corollary to this, the fall of humanity is the cause of all disease, disorders, and disabilities. Amos Yong (2011) interprets this perspective as “removing all symptoms related to the tragic character of life dominated by sin”. The logical conclusion of this view is that all disabilities will be erased. However, some disabilities are firmly engrained in the identity of the person. A person with Down Syndrome would no longer suffer the consequences of an extra chromosome in this view.. Would the erasure of the disability erase the individual? Would that imply that only non-disabled persons will be recognizable in the New Kingdom? 

2. Jesus’ Resurrected Body: This theory equates the scars on Jesus’ resurrected body with disabilities; the argument being that the resurrected body was now impaired. If Jesus is the perfect priest to offer the perfect sacrifice, then Leviticus 21:17-23 no longer pertains.

“Say to Aaron: ‘For the generations to come none of your descendants who has a defect may come near to offer the food of his God. No man who has any defect may come near: no man who is blind or lame, disfigured or deformed; no man with a crippled foot or hand, or who is a hunchback or a dwarf, or who has any eye defect, or who has festering or running sores or damaged testicles. No descendant of Aaron the priest who has any defect is to come near to present the food offerings to the Lord. He has a defect; he must not come near to offer the food of his God. He may eat the most holy food of his God, as well as the holy food; yet because of his defect, he must not go near the curtain or approach the altar, and so desecrate my sanctuary. I am the Lord, who makes them holy.’ ”

The scars on the Jesus Christ do not impede Him from serving as our High Priest. Neither do the bodily impairments which made the individual with a disability a second class worshipper exist. They are regarded as individuals who remind the non-disabled church members of the suffering of Christ. The difficulty with this approach is that the individual with a disability is still set apart from the rest of the congregation — not as a victim, but as a hero. (Kenny, 2022).

3. Liberatory Theology: This perspective on disability emphasizes the presence of the poor, the blind, and the lame who are explicitly mention in the Parable of the Great Banquet in Luke 14:1-24. (Eiesland, 1994). One Sabbath, when Jesus went to eat in the house of a prominent Pharisee, he was being carefully watched. There in front of him was a man suffering from abnormal swelling of his body. Jesus asked the Pharisees and experts in the law, “Is it lawful to heal on the Sabbath or not?” But they remained silent. So taking hold of the man, he healed him and sent him on his way. Then he asked them, “If one of you has a child or an ox that falls into a well on the Sabbath day, will you not immediately pull it out?”And they had nothing to say.

When he noticed how the guests picked the places of honor at the table, he told them this parable: “When someone invites you to a wedding feast, do not take the place of honor, for a person more distinguished than you may have been invited.If so, the host who invited both of you will come and say to you, ‘Give this person your seat.’ Then, humiliated, you will have to take the least important place. But when you are invited, take the lowest place, so that when your host comes, he will say to you, ‘Friend, move up to a better place.’ Then you will be honored in the presence of all the other guests. For all those who exalt themselves will be humbled, and those who humble themselves will be exalted.” Then Jesus said to his host, “When you give a luncheon or dinner, do not invite your friends, your brothers or sisters, your relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid.But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous.”

When one of those at the table with him heard this, he said to Jesus, “Blessed is the one who will eat at the feast in the kingdom of God.”Jesus replied: “A certain man was preparing a great banquet and invited many guests. At the time of the banquet he sent his servant to tell those who had been invited, ‘Come, for everything is now ready.’ “But they all alike began to make excuses. The first said, ‘I have just bought a field, and I must go and see it. Please excuse me.’ “Another said, ‘I have just bought five yoke of oxen, and I’m on my way to try them out. Please excuse me.’ “Still another said, ‘I just got married, so I can’t come.’ “The servant came back and reported this to his master. Then the owner of the house became angry and ordered his servant, ‘Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame.’“ ‘Sir,’ the servant said, ‘what you ordered has been done, but there is still room.’ “Then the master told his servant, ‘Go out to the roads and country lanes and compel them to come in so that my house will be full. I tell you, not one of those who were invited will get a taste of my banquet.’ ”

The central focus of this theory is move beyond the scars on Jesus’ body toward a redemption rather than the elimination of any disabilities. Individuals with disabilities will be at the final banquet “just as they are, not with their impairments erased or made invisible.” (Yong, 2011).

The Artistic Theologian summarizes three biblical doctrines to advance the argument for the inclusion of individuals with disabilities in the church (Artistic Theologian, 2020). The first doctrine is Imago Dei or the Image of God. Gruden (1994) states: Every single human being, so matter how much the image of God is marred by sin, or illness, or weakness, or age, or any other disability, still has the status of being in God’s image and therefore must be treated with the dignity and respect that is due to God’s image-bearer. This has profound implications for our conduct toward others. it means that people of every race deserve equal dignity and rights. It means that elderly people, those seriously ill, the mentally retarded, children yet unborn, deserve full protection and honor as human beings.

The second biblical doctrine supporting the inclusion of individuals with disabilities in the local church is the doctrine of Spiritual Gifts. Everyone who is a believer is graced with individualized gifts — including those with disabilities.

For by the grace given to me I say to everyone among you not to think more highly of himself than he ought to think, but to think with sober judgement, each according to the measures of faith that God has assigned…having gifts that differ according to the grace given us, let us use them. (Romans 12:3,6)

The final doctrine suggested by The Artistic Theologian is the Great Commission (Matthew 28:19-20): “Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you. And surely I am with you always, to the very end of the age.” There are no exceptions based on disability!

As stated before, the emphasis of the project is not on how disabilities originate nor on the various Theologies of Disability but rather on how to accommodate worshippers with physical disabilities. Looking at Jesus as the model, it is apparent that Jesus did not avoid encounters with individuals with diseases, disorders, or disabilities. A survey of thirty of the forty-two recorded (thirty-three if one includes death as the ultimate disability) (Boyton, nd) miracles or seventy-one percent (seventy-nine percent) of the miracles performed by Jesus as recounted in the Gospels, it is obvious that Jesus did not shy away from disenfranchised. His parable of the Good Samaritan is an example of His concern for the disabled (Luke 10:25-37). Like the findings of a recent survey by SCOPE (the disability equality charity in England and Wales) which revealed that sixty-seven percent of people surveyed admitted to avoiding disabled people.” (SCOPE, 2015), the priest and the Levite crossed to the other side of the road to avoid contacting the injured individual. Interestingly enough, they make up sixty-seven percent of the travelers that Jesus spoke about when telling the parable. Jesus commended the Samaritan, who was despised by the Jews, for his care and concern. Shouldn’t we as followers of Christ follow His examples of caring for individuals with diseases, disorders, or disabilities? 

In the late 1990s and early 2000s, the National Organization on Disabilities published three books to assist churches in becoming more accessible to individuals with disabilities. Loving Justice: The ADA and the Religious Community (Thornburgh,1996). From Barriers to Bridges: A Community Action Guide for Congregations and People with Disabilities.  (Rife and  Thornburgh, 2001), That All May Worship: An Interfaith Welcome to Persons with Disabilities (Davie, and Thornburgh, 2005) were published under the auspices of the National Organization on Disability (NOD) to assist churches gain an awareness of some of the issues facing individuals with disabilities.

A recent survey of churches (Earls, 2020) found that ninety-nine percent of Protestant Pastors agreed with the statement “A person with disabilities would feel welcome at our church”. Eighty-one percent strongly agreed. Among Protestant churchgoers, ninety-seven percent agreed with eighty-one percent strongly agreeing. When asked what the churches were doing to help make their churches more welcoming, ninety-nine percent say local churches should make facility modifications to become more accessible to individuals with physical disabilities even when it is not required by law. Seventy-five percent of pastors stated that local churches have a responsibility to provide financial resources and support to individuals with disabilities and their families

What are the churches actually doing? Seventy-five percent of one thousand Protestant pastors participating in the survey reported encouraging attendees to volunteer in events for individuals with disabilities. Seventy percent say their church provides financially for families with ongoing needs. Sixty percent report providing respite care for family caregivers. Fifty percent revealed they enlisted an additional teacher to aid the individual in class. Twenty-nine percent stated their church offered classes or events specifically designed for individuals with disabilities. Only five percent of the respondents reported doing none of the above.

“A common perception of churches that aren’t engaging in ministry with the disabled is that they do not have members with disabilities. Yet given the demographics of disability (and its invisibility in many cases), it is likely that these churches do have disabled members but don’t know it”. (Willhauck, 2024). 

The project will execute two parallel studies and compare the results.

One study examines the perceived needs of disabled adults concerning church participation. What is unique about this study is that the target population is adults who have attended or are currently attending church and became disabled after the age of 21. The age of 21 is considered by 2022 Disability Status Report for the United States to be the beginning of the working portion of an adult’s general population demographic and is easier to obtain. The emphasis of this project is on adults who were active in church before they became disabled. The result will compare church life before and after the disability.

The study will consist of two parts: a series of interviews with adults meeting the criteria of being at least 21 years of age; having been active in church before the disability, becoming long-term disabled after participating in church, willing and able to discuss the effects of the disabilities, and willing to share their experience. This study will be unlike many reported studies that rely on the caregivers's perceptions. Instead, this project focuses on the perceptions expressed by individuals with disabilities. There are currently four questions:

     1. Tell me about your experiences in the church community before your disability(ies) 

     2. Tell me about your disability(ies) and your experiences during that time in the church.

     3. Tell me about your experiences as a person with disabilities in the church today.

     4. Tell me what changes you would suggest for the church and worshippers with disabilities.

The interviews will be recorded with the permission of the participants. The interviews will be transcribed and analyzed looking for common themes. In addition, the participants will be asked to complete a brief confidential questionnaire containing demographics (when the disability occurred — sudden, incremental, other), severity of disability, age, gender, denomination or church affiliation, church attendance, and assessments regarding spiritual and religious attitudes. Should the participants want the results of this study, they will be asked for contact information as well.

A minimum of sixteen individuals will be interviewed (there are three volunteers already). Because the Center for Disease Control (CDC) (2024) categorizes disabilities into nine groupings (vision, movement, thinking, remembering, learning, communicating, hearing, mental health, and social relationships), it is doubtful that the entire scope of disabilities will be addressed by this project. Once the recordings are coded and transcribed they will be destroyed.

The second parallel portion of this project is to determine senior church leadership's perceptions of disabilities and their inclusion in the congregational life of the church. A survey based on already developed measurement tools will be distributed to local churches, to 300 church members of the Peninsula Florida District Council of the Assembly of God, and possibly to churches in North Georgia. 

Surveys already developed by such organizations as Joni and Friends (Eareckson Tada, J. 2020), National Institute on Disability, Independent Living, and Rehabilitation Research (Annual Report on People with Disabilities in America 2024. (2024). and the Kessler Foundation/National Organization on Disability 2010 Survey of Americans With Disabilities (2010) will also be used to help develop the various questionnaires used in this project.

The project will be used to raise awareness of senior church leadership on the needs of individuals with later-in-life acquired physical disabilities based on the perceptions of individuals with the disabilities rather than on the perceptions of either the caregivers or the senior church leadership team. Studies by Carter et al. (2023, 2023, 2024) have demonstrated a disconnect between the perceptions of individuals with disabilities and non-disabled individuals. This project hopes to confirm or reject Carter's hypothesis and assist churches in making themselves more aware of the needs of the disabled. In turn, this awareness may lead to greater accessibility for individuals with disabilities.

This project is important because the Centers for Disease Control states United States citizens have a one-in-four chance of becoming physically disabled between the ages of 21 and 64. Including mental health, working-age United States citizens have a one-in-three likelihood of a disability. As the population increases in age, the probability of disability also increases. (Pew Research Center, 2017). Forty-six percent of Americans ages 75 and older report having at least one disability. Twenty-four percent of adults ages 65 to 74, twelve percent of adults 35 to 64, and eight percent of adults younger than 35 report one or more disability. (DeAngelis, 2023.). 

Current research indicates that individuals with disabilities “are seen either with pity or as an opportunity for charity, and they are often viewed as having an “holy innocence” and a special connection to Jesus and his suffering on the cross.” (Allen, 2024). Neither perspective accurately represents the place of individuals with disabilities within the church family. Nor do they recognize the importance of inclusiveness for all individuals, disabled or non-disabled. “There are no special needs, only human needs, but some require more intentionality,” and the goal, especially in church life, is “always for full, meaningful participation.”’ (Allen, 2024). According to Anne Masters, who holds a doctorate in disability theology, “stigmas about people with disabilities still exist. What is important is to listen to someone and see them as a person, not a diagnosis…”. As stated earlier, everyone who is a believer is graced with individualized gifts — including those with disabilities; and those gifts are important to the flourishing of the local church. 

At the conclusion of this project, the intention is to develop and present the findings to the pastoral community through both written documents and oral presentations to local churches, as well as possibly to local and regional church conferences.

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