ordained ministers and other pastoral workers can make present the fragrance of Christ’s closeness … The Church will have to initiate everyone – priests, religious and laity – into this “art of accompaniment” which teaches us to remove our sandals before the sacred ground of the other (cf EX 3:5). This pace of accompaniment must be steady and reassuring, reflecting our closeness and our compassionate gaze which also heals, liberates, and encourages growth in the Christian life.
Pope Francis, Joy of the Gospel (Evangelii Gaudium), 169.

Disability & Pastoral Accompaniment

Accompaniment Begins with Encounter – Step 1 Encountering the Person and Understanding Experiences of Disability

Pope Francis stresses the importance of encounter and accompaniment in pastoral relationships that are respectful and reciprocal, and that we are open to being changed by those we accompany, not simply to change others. Central to synodality is showing sincere interest, respect, and concern for all members of the Body of Christ by paying attention to the details of people’s lives and considering ways to support their participation in all areas of parish life. This is important for persons with and without disabilities.

The first step of accompaniment is encounter. To truly encounter someone, we must get to know them, their interests, strengths, challenges, concerns and particular contexts of their lives. This is the same for persons with and without disabilities. With persons with disabilities, this includes becoming familiar with their particular experiences of disability and how it impacts their life.

What is Disability? It’s more than a definition.

Disability has been with us throughout human history, but the way it is understood has varied and continues to change. Today it is recognized that the impact of disability in someone’s life results from the interaction of particular condition(s) and the environment. An environment includes attitudes of people in the community and its normative culture, the physical architecture and layout of the rooms, and the rules of participation.1

A disability is a physical, cognitive, and/or emotional condition that substantially restricts one or more major life activities that most people consider routine, such as bathing, eating, managing one’s own finances or transportation, etc. It is also an ordinary part of being human. According to the CDC New Jersey Disability Report, 2023:

  • 1 in 4 adults (23%) 18 years or older have a disability.
  • 1 in 6 children aged 3 through 17 (17%) years have one or more developmental disability

Are these percentages representative of the number of persons with disabilities in your parish? If not, it’s not because they don’t exist.

  • 32% of families left their congregation because of how their son or daughter with disabilities was treated and not supported or included.
  • 38% of families considered switching congregations for the same reasons.

1 These principles are found in the American with Disabilities Act (ADA) as well as in international statements such as the World Health Organization International Classification of Functioning, Disability and Health (ICF) and the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

2 Ault, Collins, and Carter, “Congregational Participation and Supports,” 55; O’Hanlon, “Religion and Disability: The Experiences of Families,” 52.

The experiences and implications of disability are extremely diverse.

Disability can occur in utero, at birth, and at any moment throughout life, either during developmental stages or through an accident. Persons with disabilities (PwD) are not a homogenous group of people. This is why I say “persons” instead of “people.”

Disability is the largest minority group, which also intersects every demographic group:

  • gender
  • age: children, teens, young adult, middle-aged, elderly
  • culture, skin color, race, and nationality
  • married, single
  • employed, unemployed
  • wealthy, poor
  • spiritual/religious and non-spiritual/non-religious
  • citizens, immigrants
  • members of the clergy, religious, laity

Types of disabilities:

  • Learning Disability
  • Intellectual Disability
  • Developmental Disability
  • Speech Disability
  • Language Disability
  • Mental Health Concern
  • Orthopedic Disability
  • Blindness or Low-Vision
  • Hard of Hearing/Hearing Loss
  • Orthopedic Disability
  • Neuromuscular Disability
  • Neurological Disability
  • Immunodeficiency
  • Auto Immune Disorders
  • Chronic Pain

Some implications of different disabilities

  • Communicate best with simple language, pictures, or alternative communication devices
  • Use mobility devices such as wheelchairs, walkers, canes
  • Require more time to process information
  • Autism Spectrum Disorder – who have autism, among which there is significant diversity
  • may have a combination of the above conditions

NOTE:

  • People who are Deaf consider Deafness a matter of language and culture, rather than disability, but accessibility is still an important consideration.
  • When disability is part of the aging process, some may not consider it a disability, for example becoming hard of hearing or having vision loss, due to the stigma that is often associated with disability.
  • People with the same diagnosis can be impacted very differently from each other.
Accessibility INCREASESES Ability and DECREASES Disabling Experiences

Accessibility refers to the ability for someone to access information, places, space, events, and activities. Many things will impact this, especially someone’s culture, age, and specific abilities and limits. How someone communications, moves through spaces, and comprehends information will also influence it. As pastoral ministers, we must consider factors that affect accessibility:

  • Attitude
  • Physical environment and architecture
  • Procedures
  • Communication

An accessible event attends to three important characteristics: physical participation, ability to see/hear, and comprehension.  In other words, are people able to:

  • Get into and move around the space
  • Receive the information
  • Understand it? 

See section below for more detailed information about planning accessible events, presentations and programs.

Language, Imaging & Talking About Persons with Disabilities

Language About Disability Continues to Evolve

This can feel daunting to keep up with.  However, that’s not a reason to disregard it, because the way people are talked about impacts perceptions of them and how they are treated.  There are two styles of language preferred by individuals with disabilities.

  • Person-first language, for example “I am person with Down Syndrome,”
    • Preference for person-first language reacts to the historical experiences of individuals with disabilities to be defined by their disability and treated as objects of pity to be taken care of.
  • Identity-first language, “I am an autistic man” or “I am disabled.”
    • Identity-first language rejects the normative cultural assessments that devalue individuals with disabilities. People who prefer it often want to call attention to this and that disability is an important part of who they are. 
  • But, their name, regardless of their preference for person-first or identity-first language, it’s always okay to refer to someone by their name.

People with either preference want to be seen in their fullness as human beings and draw attention to aspects of the environment that increase the experiences of disability. When you’re unsure, ask their preference.

Imaging & Talking About Persons with Disabilities

Persons with disabilities are each a person who has abilities, interests, fears, desires, deficits, vulnerabilities, needs, just like everyone else and do not want to be pitied or portrayed as inspiring examples of “overcoming” their disability. Photos of individuals with disabilities should participating in the Church in age-appropriate and ordinary ways within typical, not, segregated settings. 

Links for More Information on Language and Writing about Individuals with Disabilities

English Guidelines: How to Write about People with Disabilities 9th Edition, 2020. 

Spanish Directes: Como Escribir Sobre Personas cone Discapacidades Novena Edicion. 

A good article that discusses person-first language versus identity-first language by an autistic man.   

Many persons with disabilities ‘feel that they exist without belonging and participating.’ … Our concerns should be not only to care for them but to ensure their ‘active participation’ in the civil and ecclesial community. That … will gradually contribute to the formation of consciences capable of acknowledging each individual as a unique and unrepeatable person.
Pope Francis, Fratelli Tutti, 98.
Don’t Individuals with Disabilities Benefit from Separate Activities/Programs with “Special” Supports?

No. We all learn from each other and are one human family. Diversity enriches communities. More learning and growth happens amongst people who are different: people from different cultures, with different experiences, ways of thinking, processing information, learning, and strengths. When individuals with disabilities are restricted to segregated spaces, the Body of Christ misses the opportunities for this richness, and it restricts the presence of the Spirit amongst us, within the interactions between the diverse members of the Body of Christ, due to such marginalizing practices (1Cor 12). Individuals with and without disabilities, as well as the Church, miss the benefits of such diverse relationships and opportunities for life that is rich and full of potentials for growth. 

Separation & Isolation Hurts People

Data shows that persons with intellectual and/or developmental disabilities are:

  • 4 times more likely to be bullied as a child or teen
  • 4 times more likely to experience physical and sexual violence against them
  • 3 times as likely to live in poverty

Discrimination, community violence, social exclusion, exclusion from family and unstable living conditions are lived experiences associated with the above statistics.

  • Behaviors often defined as “problems” can be symptoms of post-traumatic stress disorder. It is important not to jump to conclusions.  

Isolation from community life and relationships heightens the sense of separation and loneliness, and it has health risks too! According to Surgeon General Vivek Murthy, loneliness causes:

  • 32% increased risk of having a stroke
  • As deadly as smoking 15 cigarettes a day
  • 29% increased risk of heart disease
  • 50% increased risk of dementia

The Call and Challenge of Catholic social teaching

Catholic social teaching is concerned with all that supports human flourishing. This sounds overwhelming, but it simply means that that every person is created in the image of God, and therefore deserves access to the things of a fully human life, like a home, love, education, community participation, meaningful employment, worship, respect, the ability to make decisions in one’s life, etc.

Everyone has different strengths, interests, capacities, and weaknesses. But everyone has the ability to learn and develop when provided with appropriate supports and reasonably high expectations. Respecting this includes preparing our spaces, resources, processes, and interactions to accommodate diverse styles of learning and participating in community life. Doing this fosters growth personally for persons with disabilities, and as disciples of Christ.

It not only fosters development, it helps to change the expectations of others about persons with disabilities’ potential and capacity for growth. This is at the heart of what Pope Francis is saying in the quote from Fratelli Tutti above. It provides the beginning proofing of the Church as yeast to leaven society.

Inclusive post-secondary education for students with intellectual disability is one such example. For more information on this, check out https://thinkcollege.net/.  And strategies initiated to support specific people often benefit others. For example, ramps make spaces accessible to wheelchair users, as well as people pushing children in strollers.

I often don’t feel like I belong because of the way I’m treated!
Renee Wood, a “retired pit bull disability rights activist and blogger” with cerebral palsy responding to Church documents that say everyone belongs by virtue of their baptism.

Supports Provide ACCESS to Needs – They Are Not Needs in Themselves

There are No “Special Needs” – only “Human Needs”!

Terms like “special needs” and “differently abled” are euphemisms. Such language informs practices that emphasize differences between people with and without disabilities. Individuals with disabilities reject such terms because they find them either patronizing or indicating the speaker’s discomfort with disability, that it is something not discussed in polite company.

Such language and practices contribute to the sense of isolation and not belonging that Renee voices above and that Pope Francis references in Fratelli Tutti.

The term “special needs” may be a holdover from special education. When encountered, it is typically from parents or family members who have become so used to being told what their loved one cannot do or will never do, rather than considering what they can do when provided with appropriate education and supported with reasonably high expectations.   

Erik Carter, a long-time researcher at the intersection of disability, faith, as well as an inclusive educator, says, “there are no special needs, only human needs. However, some individual will require extra support.” Supports are things like stairs, ramps, differentiated instruction, communication devices, etc. They provide access to needs, but are not needs in themselves.

Everyone needs to belong, to be listened to, to contribute, to be needed, to be heard, appreciated, supported, and have access to appropriate education, worship, employment, etc. The faith we proclaim calls us to support this.

The Human Need to Belong

The desire to belong is a basic human need, and the above statistics indicate the human cost when it’s lacking in someone’s life. So, it is not surprising that “feeling like they belonged” was the answer of teens and young adults with autism and/or intellectual disability and their families, when Erik Carter and his colleagues asked them what they wanted most from their faith communities in the Faith and Flourishing Project. But what does this really mean? It isn’t enough to say someone belongs. Through further conversation, Carter and colleagues identified ten dimensions of belonging. All ten need to be present for someone to feel they belong in a community.

Further below these 10 dimensions are organized into Levels of Belonging to provide a simple assessment and planning tool for your parish regarding persons with disabilities.

Encounter Step 2 – Getting to Know the
Person

First Questions

Getting to know someone is the first step in accompanying them. The process is the same for all people, with and without disabilities. Though there may be some additional questions, depending on the person Here are some initial questions that you may already ask new people you notice attending Sunday Eucharist: 

  1. If you don’t know their name, this is the first question, after introducing yourself.
  2. Are any parish groups of interest?
  3. Do you have particular interests in parts of the mass or Catholic traditions? (for example, really enjoys music, ritual, singing, praying the rosary, etc)
  4. What other things are you interested in?
  5. What are your particular strengths?

As the conversation progresses and you realize the individual has a disability, here are some additional questions.

  1. What kind of supports would help you participate more effectively?
  2. What kind of situations make you feel uncomfortable?
  3. What are signs of you feeling uncomfortable? (What behaviors might be presented?)
  4. What are helpful responses to help you feel comfortable again?
  5. Notice the individual’s way of communicating. Speech, augmented communication devices, letter board, etc? If speech, do they use a lot of words or just a few?  
  6. Do you know any of our parishioners?

The dynamic will change a bit based on the person’s age, how much they communicate independently, and if you’re speaking directly with the person, or mostly through the parents, caregivers, or service providers, at least initially.

In all cases though, you want to include the individual if they are present in age-appropriate ways. The first step is to develop a good understanding of the person’s strengths, interests, challenges, and desired supports from their perspective, again in age-appropriate ways.

Conversations & Questions to Support Deeper Levels of Participation

There is more information that will be helpful to support deeper levels of participation. It could be at the request of a person with a disability or parents regarding their son or daughter about deeper levels of engagement in the parish, such as adult faith formation, the parish catechetical program, youth ministry, social justice activities, choir, etc. You want to understand how they learn and what would be helpful ways to support this. No matter our age, we continue to learn throughout life, including about our faith and ways to participate.

The suggestions below for questions/conversations to get to individuals with disabilities will help you develop a pastoral plan for PwD.

A Brief Reminder

  • Preference is Person First Language, but verify their preference. Seek to understand the person, not the disability.
  • Ask about their strengths, likes, dislikes AS WELL AS specifics learning supports in addition to their diagnosis.
  • Parents, teachers, the person, caregivers, and support professionals are a great source of insight and guidance.
  • Possibly observe in other settings: school, home, work, enrichment activities, etc.

Framing the Conversation

Determine what the individual (as much as possible) and parent(s) want regarding the level of participation. Besides the person and family members, their teachers and/or service providers can be the best source of information to nurture ideas for parish pastoral leaders and catechists.

  • Demonstrate an attitude of openness and support. 
  • Begin with the questions in the above block if you have not met with them before.
  • It is important to begin with someone’s strengths and interests, what makes them unique, and then proceed to their preferred supports. 
  • We are each a person first. Particularly in a faith community, different abilities and disabilities do not determine our value as a person, though they do influence what each person is able to do.
  • Assure them that your questions seek to to provide the most supportive environment possible.
  • Their information will be private and confidential.
  • They will decide what information to share and with whom. Hopefully, this will at least include the people interacting directly, such as catechist, circle of friends, etc.
  • This will help to explain different behaviors, leading to awareness and improved understanding in the parish.
  • Respect that each person/family will have different goals and supports, AND that each person/family will have different desires for parish involvement.

Here are some additional questions to guide your conversation. But remember, it IS a conversation. You are not simply filling out a form. 

  1. What kind of experience do you want – what level of participation?
  2. What are effective learning strategies?
  3. What are good motivators?
  4. What causes discomfort and helpful responses.
  5.  What is helpful to hold their attention?
  6.  What is their diagnosis? This is only to provide some additional sense of supports that could be helpful.
  7. How would you describe their social relationships?
    • With siblings?
    • With same age peers?
    • With other members of the family and community?
  8. What is their school or day environment like: inclusive setting, separate programing, or mixture?
  9.  What adaptations and supports for learning and participation do they use?
  10. Do you attend Mass together? If yes, briefly describe the experience. If not, why not? (This is not for judgment, but to determine if there are any behavioral issues preventing it. If so, learning to attend Mass i a part of the catechetical experience and may be the place to begin.) 
  11. Do they have any diet or environmental issues?
  12.  Do they have any medical issues you need to be aware of?
  13. Is there anything else you would like to share?

Assessing Parish Presence & Participation of Persons with Disabilities (PwD)

The ten dimensions of belonging shared above are organized into the Four Levels of Belonging in the table below to provide a simple assessment and planning tool for your parish regarding persons with disabilities. 

  • The widest column lists many different areas of parish life to consider, though it’s not exhaustive.
  • Let your imagination guide you about new possibilities!
  • The column on the far right is a way to assess your parish’s progress addressing each Level.
  • It can also help you decide what to focus on next.

The overarching question is, “to what extent do PwD participate in your parish?”

  • In what areas of parish life do PwD participate?
  • In what ways do they participate, within ordinary or segregated settings?
  • What roles they perform?

Remember – we are a Pilgrim Church – always a work in progress! No blaming or shaming, we begin where we are and seek, seeking to grow in our ability and capacity for synodality.

Carter, et al; Indicators of Belonging, Archdiocese of Newark, One Body in Christ Together Task Force pilot program. 2022.

Planning Accessible Events, Presentations & Programs

Be Prepared – Planning Ahead In Registration Process

Remember, accessibility refers to the ability for someone to access information, places, and activities. How someone communications, moves through spaces, and comprehends information will also influence it.

In registration process, ask if someone requires any supports or assistance to participate fully. They will tell you what they need.

Below are some possibilities:

  • Large print handouts. San serif font such as Ariel, 17 or larger. Ask what font size
  • People who are blind or have low vision should receive the slides ahead of time digitally. See Preparing Accessible Presentation for more information on screen reader accessibility.
  • American Sign Language Interpreter – people who are Deaf should sit together up front near interpreter.
  • Captioning
  • Mobility assistance – wheelchair, cane, walker, scooter, etc – see recommendations on physical accessibility
  • Note taking assistance
  • Food or environmental allergies
  • Sensory issues
Disabling Aspects of the Physical Environment

This is more than a lack of ramp or elevator alternative to stairs. It also includes:

  • Cramped seating that impedes:
    • wheelchair users,
    • people who need to move around a bit,
    • someone who is blind and uses a white cane or service dog.
  • Ability to access and/or understand the information:
    • as presented,
    • in handouts
    • on a website

Building Accessibility – A Checklist – People Able to Get in & Move Around

  • Designated disability parking spaces and drop off location near the entrance
  • Parking area is uncluttered and has curb cutouts, appropriate lighting to see at night
  • Clear signage for entrances, exits, restrooms
  • Restrooms accessible to wheelchair users
  • Ramp or elevator for people who can’t use stairs

Room Layout – Checklist

  • Side aisles should be at least 60”
  • Inner aisles at least 36” and be free of chairs, power chords, etc. 
  • Seating should allow for mixed seating and personal preference.  For example, don’t designate a specific table or area for wheelchair users.  
  • Designate at least one greeter who can assist anyone who needs a chair moved to allow space for their wheelchair or service animal.
Preparing an Accessible Presentation

Ensure that participants can hear, see, and understand the material presented and can participate in the event/process. PowerPoint slides and projected material have two primary concerns, that they are accessible and understandable during the presentation.

Projected material should be visible from the back of the room, including texts and important visuals such as charts and graphs.

Individuals who are blind or have low vision should have access to digital copy of the presented material to access through their screen reader or large print. This will also benefit individuals who need more time to process information.

Consider evidence-based teaching/learning practices based on your audience. Follow active learning principles and make session interactive.

Slide layout and formatting suggestions:

  • Accessibility via screen reader and audio files are important considerations. More on this on linked page for more detailed accessibility information.
  • Use standard slide layouts as much as possible to simplify ordering of slide sections for screen reader access.
  • Font: a sans serif font such as Arial, Calibri, Tahoma, or Veranda.
  • Slide title size should be at least 44.
  • Slide text should be 24 -36.
  • Limit the amount of information on each slide, ideally to a maximum of 8 lines per slide.
  • Leave space at the bottom for captions to show in the recording.
  • Text at left margin, not full justified.
  • Simple backgrounds are preferred that have high contrast between text and background.
  • Use Microsoft Accessibility Check before recording and share slides. Click here to access Microsoft Accessibility Check instructions.
  • Describe charts, tables, and any important visuals in presentation within flow of your comments. You can add descriptions to all of these within presentation by right-clicking on ‘alt text’ and add simple description.
  • Handouts: San serif font size 12, 17 for large print.
Delivering an Accessible Presentation

Suggestions for Presenters and Table Facilitators for an Accessible Presentation

After preparing for an accessible event, the final consideration is its delivery. Very often these are not considered, but they have a big impact.

  • Speak clearly and use simple language for different comprehension levels. Avoid jargon, which includes much of our treasured theological and spiritual language. Particularly since we want to listen to people who feel disengaged with the Church, we can’t presume these terms will be familiar or relatable.
  • Be visible: face participants when speaking and keep microphone and hands away from your face for people who lip-read. They will presumably be sitting in the front, so you should stay in the front of the room.
  • Use microphone for large room presentation and repeat questions if participants don’t have a microphone to ask questions. For large events, best practice is to have a few people with cordless microphones to go to questioners.
  • Cover all the text on slides, which is different than simply reading the slides.
  • Pace your delivery to give people a chance to process the information.
  • Engage your audience in the learning process.
  • Allow time for movement breaks OR encourage those who need to walk around periphery of room if needed.
  • Describe pertinent visuals and graphics.
  • Describe any visual information.  For example, if you ask people to raise their hands in response to a question, say what percentage or approximate number of people did so.
  • Hearing assistance: hearing loop, FM or Infrared Systems for people who are Hard of Hearing or have hearing aids or cochlear implants.
  • ASL for people who are Deaf.  Speak at a reasonable pace for interpreter and you should be standing near each other, so individuals watching the interpreter can also see your expressions and gestures. Spell any unfamiliar words. People who speak Spanish use ASL, but interpreter should be bilingual.
  • Limit background noise as much as possible.

For more detailed accessibility planning click here

This presentation will primarily focus on raising a child born with a disability or diagnosed in their developmental stages, but the insights from parents and professionals will be useful for all.

Our Catholic faith teaches that ever person is created in the image of God, is valuable and and can each flourish to the best of their own ability This requires appropriate support, education, and opportunities to participate meaningfully in all areas of life. This is the foundation for this conversation.

I am grateful to the Walsh-Hack, Cabrera, and McDonald Families and Dr. Peter Smith of University Chicago Medical School for sharing their experiences, wisdom, and insights!

Parish leaders new to ministry with persons with disabilities will benefit from this presentation as well.

Ben’s Solace: One pastor reaches Out to a parishioner with autism in His Own Way

During the COVID pandemic, Fr. Jim Worth, pastor of St. Joseph Church was especially concerned about one of his parishioners, Ben. Attending mass and serving as hospitality minster and other roles were an important part of Ben’s life, a man with autism. The pandemic was a very difficult for him because of the forced isolation and inability to be with people. This is a 2-minute clip from the original 6-minute video produced by Colm Flynn and EWTN. I’m grateful to Colm for sharing the file and allowing me to make this shortened version.

Contact

Anne Masters, PhD, FAAIDD

Anne.Masters@rcan.org
973-497-4309

Follow the Office for Pastoral Ministry with Persons with Disabilities