Culture, Essays

Disability and Inclusion in the Archdiocese of Chicago: Assessing Full Participation within Places of Worship

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Introduction

For my house shall be a house of prayer for all people.” (Is 56:7)

In July of 2015 communities around the United States commemorated the 25th anniversary of the Americans with Disabilities Act (ADA). The law, signed by President George H.W. Bush in 1990, was enacted to “prohibit discrimination and guarantee that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life.”[1] Since its passage doors have been opened to improve opportunities for employment, access, and overall quality of life for individuals living with disabilities. Actions taken by governments and private businesses have made the world more accessible, allowing greater participation for all in everyday life. Religious entities and areas of worship are exempted from the ADA, but the spirit and message of inclusion still morally applies. Twelve years prior to this historic legislation, in 1978, the National Conference of Catholic Bishops issued the Pastoral Statement of the U.S. Catholic Bishops on Persons with Disabilities in order “to promote accessibility of mind and heart, so that all persons with disabilities may be welcomed at worship and at every level of service as full members of the Body of Christ.”[2] This statement was re-affirmed in 1988 and 1998, and continues to serve as basis for the call to create an environment where all—regardless of physical or intellectual ability—may participate fully in the Mass.

While both the Pastoral Statement and the ADA have sparked great progress, much work remains to be done—specifically with respect to ensuring full participation in Church life. Leaders of faith-based communities need to ask if places of worship are truly open for all who choose to participate. This is especially important as diversity within a place of worship creates opportunities to combine the gifts and talents of an entire congregation in order to strengthen these communities of faith. Individuals with disabilities experience a multitude of barriers to full participation within their chosen worship place. With medical advances, armed conflict, and an aging population, the number of individuals with physical and non-visible disabilities grows each day. It is imperative to create a worship environment which fosters inclusivity for individuals with disabilities in order to allow all to benefit from widespread diversity, full participation, and a meaningful relationship with God.

Photo: Dominique Archambault; CC-BY-NC-ND-2.0.

Photo: Dominique Archambault; CC-BY-NC-ND-2.0.

As part of the 2015 celebration of the ADA, the Archdiocese of Chicago partnered with Marianjoy Rehabilitation Hospital to better understand the current state of disability awareness and inclusion across places of worship in the Chicagoland area. The goals of this effort were to understand what gaps may exist, and to identify opportunities to increase access for people with disabilities who wish to access places of worship.

Methods

Survey Development Process

The purpose of this inquiry was to understand what accessibility disparities may exist, as well as to identify opportunities to increase access for people with disabilities to places of worship. This assessment was not solely focused on physical access to churches and other religious venues, but also questioned perceptions related to full participation in the services offered, specifically evaluating opportunities for involvement in the various ministries offered in the parish. A questionnaire was developed following a literature review and expert consensus from rehabilitation professionals and liturgical personnel. The survey was pre-tested to ensure the instrument was easy to complete, all domain areas of accessibility were covered, and questions were not ambiguous. Further, specific attempts were taken to ensure the questions were not double-barrel or contained multiple meanings. For the purposes of this investigation, respondents’ perceptions of accessibility were assessed by focusing on attitudes related to disability and inclusion within their individual parishes.

The World Health Organization defines disability as “an impairment, limitation, or restriction that limits participation in life activities.”[3] This definition covers readily apparent physical disabilities, as well as less obvious and/or non-visible conditions (e.g., vision, hearing loss, emotional or cognitive disorders). Inclusion refers to ensuring people with disabilities have the ability and opportunity to participate in everyday activities. This includes the creation of appropriate pathways, policies, and protocols which allow those with disabilities access to the same types of roles as those with no disability.[4]

The 36-question electronic survey was distributed via Survey Monkey™. Response formats included multiple choices for demographic questions and a 5-point Likert scale response format for rating current perceptions related to the parish’s accessibility. The question content focused on uncovering the current state of accessibility as well as attitudes and beliefs about individuals with disabilities. One question was intentionally duplicated on the survey (i.e., asked at the beginning and end) in order to evaluate if changes in attitudes and beliefs regarding accommodations for individuals and families with disabilities within the worship space had occurred. This question was a binomial response where the participants responded either yes or no to the overall accommodation question. This was done to assess if merely the process of participating in the survey increased awareness related to inclusion.

Data Collection

The invitation to complete the questionnaire came via e-mail with a link to the electronic survey from the Archdiocese of Chicago. This e-mail was sent to 355 Catholic parishes in the Archdiocese of Chicago. Participation in the survey was voluntary and all responses were anonymous. The survey was open for collection for approximately three weeks and multiple e-mail reminders along with current return rates requests were sent out to the parishes.

Data Analysis

Descriptive statistics related to percentage of occurrence with multiple choice and demographic questions are reported. Reported perceptions were evaluated on a 5-point Likert scale response with a score of 5 representing strongly agree and a score of 1 representing strongly disagree. For the intra-group comparisons (beginning of survey response versus end of survey response) related to the overall accommodation question, the non-parametric McNemar change test was calculated to determine if changes in attitudes and beliefs from the beginning to the end of the survey had significantly changed. Statistical analyses were completed using the Statistical Package for the Social Sciences (SPSS) computer software version 23.0. Researchers from Marianjoy Rehabilitation with specialty experience in the conduct of research focused on disability conducted the primary interpretation of the data.

Results

Survey Participants

A total of 355 surveys were sent out with representatives from 130 parishes responding. Of those 130 surveys received, 120 were complete and deemed useable thus representing a 34% survey return rate (120/355). The following results are based upon the 120 completed surveys. Of those who completed the survey: 89% were clergy; 9.2% were employees of the parish; and 1.2% were lay leader (volunteer). Gender distributions for survey respondents include 91% males and 9% female. Age ranges for respondents found 90% were between the ages of 45–74; 9% were between the age of 18–44; and 1% was 75 or older. Congregation of parish size for survey respondents are summarized in Table 1.

 

Table 1. Parish Size
Parish Size %
1–250 9.2%
251–1,000 29.2%
1,001–5,000 57.5%
5,000+ 4.2%

Current State of Accessibility

The survey contained fifteen questions related to the current state of accessibility within places of worship for the Archdiocese of Chicago. Table 2 provides a summary of these results and reveals the majority of places of worship (95%) provide some type of access for a wheelchair user. Potential opportunities for improvement with wheelchair accessibility include making the lectern available for wheelchair users and providing internal ramps. Other opportunities to improve accessibility included offering sign language interpreters and/or assisted listening devices; providing training for laypersons regarding disability etiquette; offering large print material; and offering an abbreviated service for individuals with a disability.

Table 2. Current State for Available Accommodations
Accommodation % of Parishes providing this accommodation
There is a way for a wheelchair user to access the primary worship space 95.0%
The worship area is adequately lighted in a way that ensures lip readers are able to successfully see the speaker’s face 83.3%
Restrooms are accessible within the infrastructure 82.5%
There are external ramps present within the environment 79%
There is a method for individuals with disabilities to comfortably offer suggestions for removing barriers 75%
There is a service offered which incorporates language that is easy to understand, and integrates music and familiar prayers and hymns 73.3%
Religious education programs intentionally plan for accommodations for children with disabilities 64.2%
Language used in the service is sensitive to those with limited mobility such as “Stand or Remain Seated” or “Kneel or Remain Seated” versus “Congregation Stands” or “Congregation Kneels” 63.3%
Training of laypersons (e.g., readers, musicians, ushers) includes disability etiquette/awareness 56.7%
There is a separate room available for both children and adults in which the service can be seen and heard 45.8%
There are internal ramps present within the environment 45%
We have a variety of forms of reading materials (e.g., prayer books, hymnals) available in large print or braille 40.0%
Wheelchair users can access the lectern in order to participate in readings 32.5%
American Sign Language (ASL) interpreters or assistive listening devices are available 31.7%
There is a shortened or abbreviated version of the service offered 9.2%

Table 3 provides a summary of the questions related to the current state of awareness of disability and accessibility within the parish. The majority of respondents reported their awareness of both physical and non-visible disabilities within their congregation. Additionally, almost 60% of the respondents reported being aware of some areas of the worship space which were not accessible. Finally, the question of whether the act of participating in this survey would increase awareness of the current state was assessed. Approximately 77% of respondents replied “yes”—the congregation provides more than enough accommodation for individuals and families with disabilities—at the beginning of the survey. When asked the same question at the end of the survey, only 61% of the respondents replied “yes,” revealing 20 respondents (17%) had changed their score. This finding was statically significant (p=.022) and suggests the perceptions regarding accessibility had changed by merely participating in this survey.

Table 3. Awareness of Disability and Accessibility
Accommodation % of Parishes
There are members of my congregation that have physical disabilities 97.5%
There are members of my congregation that have non-visible disabilities 94.2%
Accommodations have been implemented according to applicable safety and regulatory standards 90.8%
Areas of your worship space that are not accessible 58.3%

Beliefs & Attitudes Regarding Current State of Accessibility

Respondents were asked seven questions related to the current state of beliefs and attitudes within the congregation regarding accessibility and inclusion. Respondents ranked the below statements in Table 4 on a 5-point Likert scale with a score of 5 indicating strongly agree with the statement and a score of 1 indicating strongly disagree with the statement. For six of the seven statements, a higher score (i.e., closer to 5) reflects a more positive perception of the current state of attitudes and beliefs of the respondent. 

Table 4. Attitudes and Beliefs Ranking
Accessibility Statement Rating
The congregation is committed to promoting disability awareness and inclusion 3.94
The congregation is progressing towards greater disability awareness and inclusion 2.90
I feel the current environment is accessible for individuals with disabilities (including those with physical disabilities and those with less apparent or non-visible disabilities) 2.82
Architectural changes to the environment have altered the look and/or attractiveness of the worship environment 1.64*
Individuals with disabilities are fully involved in the life of the congregation 2.65
Individuals with disabilities are given opportunities to serve within the congregation 2.91
Gifts and talents of individuals with disabilities are actively identified and used to increase inclusion into the congregation 2.49
*Lower score for this statement reflects a more positive perception.

When asked the same question at the end of the survey, only 61% of the respondents replied “yes,” revealing 20 (17%)respondents had changed their score.

Table 5 is a summary of the attitudes and perceptions of accessibility and inclusion as related to specific disabilities regarding full participation in services at the place of worship. Again, for this question, respondents were asked to rate on a scale of 1 to 5 whether individuals with the disabilities listed in Table 5 are able to fully participate in services at their place of worship. Results are presented by the percentage of respondents who replied either agree or strongly agree that individuals with the specific disability listed were able to fully participate in the service in their parish.

Table 5. Specific Disability Inclusion
Disability % Agree or Strongly Agree
Developmental Disabilities 80%
Physical Disabilities 87%
Attention Deficit/Hyperactivity Disorders 63%
Blindness or Low Vision 58%
Brain Injuries 47%
Deaf/Hard of Hearing 48%
Learning Disabilities 65%
Medical Disabilities 76%
Psychiatric Disabilities 45%
Speech and Language Disabilities 53% 

Reported Examples of Inclusion at the Parish Level

Twenty-eight of the respondents (23%) shared specific experiences and examples of how the congregation came together to meet the needs of an individual or individuals with a disability. Some respondents were able to identify multiple examples across different areas of needs. Table 6 summarizes the reported experiences of the twenty-eight respondents to this question with the majority of them reporting on physical accommodations (e.g., installation of elevators, ramps). One identified best practice at the parish level was the development of an inclusion awareness group that addresses issues related to accessibility and inclusion and how this type of committee has helped to increase sensitivity towards the needs of individuals with a disability.

Table 6. Reported examples of Inclusion at the Parish Level
Example Category Number of Examples
Physical accommodations 12
Religious education for children with special needs 8
Inclusion of adults with disabilities in lay ministries 5
Accommodations for individuals who are deaf or hard of hearing 2
Accommodations for individuals with visual impairments 1

Discussion

The results of the survey suggest many congregations are attempting to make efforts to ensure full inclusion of individuals with disabilities; however, several opportunities still exist to continue to improve accessibility and full inclusion. Evidence of this can be seen in the finding illustrating how the mere process of participating in the survey served to increase awareness of disability and inclusion issues among those surveyed. This demonstrates how attitudes and perceptions of both disability and inclusion are still not necessarily aligned with everyday practice. Just asking the question and highlighting what full participation actually involves changed the perceptions of a significant number of parish leaders participating in this study.

Photo: Joshua B.; CC-BY-ND-2.0.

Photo: Joshua B.; CC-BY-ND-2.0.

The results also suggest a disconnect between the perception of fully including individuals with a disability into the services and the accommodations currently being offered. For example, 87% of the respondents reported agreeing or strongly agreeing that individuals who use a wheelchair are able to fully participate in the service, yet only 32.5% reported wheelchair users having access to the lectern to participate in the service as a reader. Further, 58% of the respondents reported agreeing or strongly agreeing that individuals with a visual impairment were able to fully participate in the service; however, only 40% of the respondents reported offering a variety of reading materials (e.g., large print). For individuals who are deaf or hard of hearing, 48% of the respondents reported agreeing or strongly agreeing that they encouraged full participation in the services, yet again, only 31.7% of respondents reported offering a listening device or interpreter services.

There must be humble and sincere recognition of the gifts that all people, regardless of physical or cognitive ability, can bring to the life of the parish.

Taken as whole, it is clear that the concept of “full participation” is neither well defined nor understood at the parish level. Participation is more than attendance. Consider the CDC definition of inclusion referenced earlier which speaks to equal access and opportunity regardless of physical ability. While there are obvious limitations to how far a parish can go (i.e., cognitively impaired parishioners may never be able to serve in ministries such as proclaiming the Word or distributing the Eucharist), there would appear to be accommodations which can be made to involve people with disabilities in a number of ways. This can be found in the examples reported by a portion of the respondents who are demonstrating best practices for inclusion and accessibility at their parishes. Working together to share these best practices from the parish level, such as an inclusion awareness committee, across the Archdiocese might help to further advance this issue.

Relevance of Findings

Approximately 18% of the United States (U.S.) population reports having some form of disability, with 12.6% of the total population categorizing their disability as severe.[5] If this subset of the population were reported as a minority group, it would be among the largest in the U.S. These numbers will likely continue to grow in the coming years as the pace of medical advances increases, armed conflicts continue, and the population at large ages. The goal of creating an inclusive parish culture is important, as Ginny Thornburgh, Director of the American Association of People with Disabilities’ Interfaith Initiative, notes:

The National Organization on Disability found that approximately 85% of people with and without disabilities state their religious faith is important in their lives, but only 47% of people with disabilities attend church at least once a month, most likely due to architectural, programmatic, communication and attitudinal barriers. Of all the barriers to full participation and inclusion, the barrier of unexamined attitudes is the most difficult to address.[6]

One identified best practice at the parish level was the development of an inclusion awareness group that address issues related to accessibility and inclusion.

By better understanding the current state of disability and inclusion within faith-based environments, it may be possible to positively influence access, inclusion, and full participation for all. Improving access to faith-based communities for individuals with disabilities has the power to positively impact an entire congregation by combining the gifts and talents of all in order to facilitate a greater sense of personal and community faith and spirituality. Inclusive parish leaders, both clergy and lay, can make a difference in the lives of those seeking spiritual and community fulfillment through participation in parish life.

Recommendations

The original Pastoral Statement of U.S. Catholic Bishops specifically stated, “Realistic provision must be made for persons with disabilities to participate fully in the Eucharist and other liturgical celebrations.”[7] The findings of this study can be used to demonstrate a number of specific ways parish leaders can begin to invite more complete participation in parish life, including:

  • establish a working group of parish leaders (including clergy and lay participants) to establish a formal strategic approach to completely assess parish inclusion;
  • educate parish staff and volunteers on disability awareness issues to increase understanding of all types of disability with a focus on non-apparent disabilities;
  • evaluate specific accommodation strategies for individuals and families of individuals with disability which allow for more than mere attendance at Mass or other parish functions, but which focus on increased participation in activities of parish life;
  • provide training which further defines expectations and verbiage/terms of the ADA (e.g., reasonable accommodation, undue hardship, definition of disability) and the intent of the Pastoral Statement from the U.S. Conference of Catholic Bishops;
  • create networks for sharing best practices for improving awareness of inclusion between parishes and across the Archdiocese.

Conclusion

The goal of full participation can only be attained through the implementation of authentic inclusion efforts. There must be humble and sincere recognition of the gifts that all people, regardless of physical or cognitive ability, can bring to the life of the parish. As St. Paul reflected in his first letter to the Corinthians:

Indeed, the parts of the body that seem to be weaker are all the more necessary, and those parts of the body that we consider less honorable we surround with greater honor, and our less presentable parts are treated with greater propriety, whereas our more presentable parts do not need this. But God has so constructed the body as to give greater honor to a part that is without it, so that there may be no division in the body, but that the parts may have the same concern for one another. If [one] part suffers, all the parts suffer with it; if one part is honored, all the parts share its joy. (1 Cor 12:22–26)

Disability does not imply weakness, and to perceive it in that manner is to miss the opportunity to be truly whole. For this reason, it is incumbent on Church leaders to recognize the potential of all members of their congregations. Great progress has been made in the last three decades, but the work is not done. St. Francis reminded us, “I have done what is mine to do. May Christ teach you what is yours.” Church leaders need to recognize that the goal of attaining full participation is theirs to do.

Featured Photo: Holy Name Cathedral (Chicago, IL); Justin Kern; CC-BY-NC-ND-2.0.

Disclosures

Authors have no financial or non-financial conflicts of interested to report. This work was completed with in-kind support from Marianjoy Rehabilitation Hospital.

Acknowledgements

The authors would like to acknowledge Archbishop Blase Cupich of the Archdiocese of Chicago and Kathleen Yosko, the President of Marianjoy Rehabilitation Hospital in Wheaton, IL for providing the resources to complete this important assessment of inclusion across the greater Chicago area.

[1] United States Department of Justice, Civil Rights Division. (2015). Introduction to the Americans with Disabilities Act. Retrieved March 10, 2016 from: http://www.ada.gov/ada_intro.htm

[2] Schnurr, D.M. (1995). Guidelines for the Celebration of the Sacraments with Persons with Disabilities. Retrieved February 15, 2016 from http://www.usccb.org/beliefs-and-teachings/how-we-teach/catechesis/upload/guidelines-for-sacraments-disabilities.pdf

[3] World Health Organization: Disabilities. (n.d.). Retrieved August 7, 2015, from http://www.who.int/topics/disabilities/en/

[4] Centers for Disease Control. (2016). Disability Inclusion. Retrieved February 15, 2016 from http://www.cdc.gov/ncbddd/disabilityandhealth/disability-inclusion.html

[5] United States Census Bureau. (2012). Nearly 1 in 5 People Have a Disability in the U.S., Census Bureau Reports: Report Released to Coincide with 22nd Anniversary of the ADA. Retrieved February 15, 2015 from https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html

[6] Disabilities and Faith. (2016). Training Faith-based Organizations on How to be More Welcoming and Accessible. Retrieved March 10, 2016 from http://www.disabilitiesandfaith.org/

[7] Schnurr, D.M. (1995). Guidelines for the Celebration of the Sacraments with Persons with Disabilities. Retrieved February 15, 2016 from http://www.usccb.org/beliefs-and-teachings/how-we-teach/catechesis/upload/guidelines-for-sacraments-disabilities.pdf

References

Centers for Disease Control. (2016). Disability Inclusion. Retrieved February 15, 2016 from http://www.cdc.gov/ncbddd/disabilityandhealth/disability-inclusion.html

Schnurr, D.M. (1995). Guidelines for the Celebration of the Sacraments with Persons with Disabilities. Retrieved February 15, 2016 from http://www.usccb.org/beliefs-and-teachings/how-we-teach/catechesis/upload/guidelines-for-sacraments-disabilities.pdf

Disabilities and Faith. (2016). Training Faith-based Organizations on How to be More Welcoming and Accessible. Retrieved March 10, 2016 from http://www.disabilitiesandfaith.org/

United States Census Bureau. (2012). Nearly 1 in 5 People Have a Disability in the U.S., Census Bureau Reports: Report Released to Coincide with 22nd Anniversary of the ADA. Retrieved February 15, 2015 from https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html

United States Department of Justice, Civil Rights Division. (2015). Introduction to the Americans with Disabilities Act. Retrieved March 10, 2016 from: http://www.ada.gov/ada_intro.htm

World Health Organization: Disabilities. (n.d.). Retrieved August 7, 2015, from http://www.who.int/topics/disabilities/en/

Mulcrone, Brady, et al.

Fr. Joseph A. Mulcrone is the Director of the Catholic Office of the Deaf in the Archdiocese of Chicago.
John Brady, DHA, FACHE is Vice President of Operations at Marianjoy Rehabilitation Hospital in Wheaton, IL.
Stephanie Salentine, OTR/L, MOL is Clinical Development Coordinator at Marianjoy Rehabilitation Hospital in Wheaton, IL.
Susan Brady, DHEd, FASHA is Director of Research at Marianjoy Rehabilitation Hospital in Wheaton, IL.
Katie Peskor is Director of Rehabilitation Services at Marianjoy Rehabilitation Hospital in Wheaton, IL.