The Cares of My Heart

A story of pastoral care and a youth with disabilities

Sarah R. Nettleton
Presbyterians for Disability Concerns (PDC) Leadership Team

When I was younger I had many questions about my disability and God. In my exploration of the religious issues of my disability, I was blessed with understanding parents, a wise associate pastor and the ability to communicate. Not everybody with a disability has those three things coming together. My story will provide clues and ideas to help anyone providing pastoral care to people with disabilities.

My clinical diagnosis is Cri-du-chat or 5p-Syndrome. In simple terms, I have a variety of disabilities. I learned to walk when I was four years old. I still can’t run or jump, but with the help of friends in an adaptive downhill ski program and a long pole we all hold onto, I am a downhill skier. My hands do not work well so I am unable to write, draw or other fine motor activities. I am unable to talk with my voice. I communicate using Facilitated Communication, typing one letter at a time with support.

I learned Facilitated Communication when I was six years old. Facilitated Communication (or FC for short) involves providing support to my wrist and pulling my hand back after I type each letter. Without FC I could communicate by crying, smiling or sometimes pointing. My hands don’t work well so I could not sign much. Basically, my life was a guessing game. My parents were good at reading my mood but didn’t always know why I was sad, mad or happy. With FC, I could communicate in words and it got easier for them to really understand what I was feeling.

This piece is just a story of one person’s experience, not every person with a disability will experience things like I did. The examples I use may give you ideas to pursue with someone you are working with.

Once I started to really ask questions about God and my disability, my parents decided I needed to talk with someone else. I had asked, “Why didn’t I die?” The answer they gave was, “because God didn’t want you to.” Next I asked, “Why not?” and Mom made me an appointment with our associate pastor. Our sessions were great; I had a safe place to ask tough questions. It was a little weird because I needed Mom to facilitate so I could communicate but she is good at blending into the background and just being a communication device.

Some of the things I needed to talk about were typical kid worries like moving to a new school, having friends, school work, etc. Then there were the tougher things like “Why didn’t I die?” “If God loves me, why do I have all these disabilities?” and frustrations about various aspects of my disability.

Mrs. Tobin patiently listened to my frustrations and feelings. She let me talk about things you couldn’t talk about at school. She listened with her heart! She explained that God loved me, disabilities and all. She shared Ann Weems’ poems, “I’d Write For You A Rainbow” and “I See Your Pain.” Those poems helped me a lot and copies of them are still in my Bible on my nightstand. We always ended our sessions with prayer. I got through some hard times because of the pastoral care Mrs. Tobin provided.

I found that pastoral care worked better for me than sessions with school mental health professionals. I needed the connection to God that you can’t get from a school setting. For me, a life with disabilities required a foundation of faith for the journey forward.

Here are some tips for people providing pastoral care to people with disabilities.

Listen with your heart.
People with disabilities can be great people readers and will know in an instant if you are not genuine.

Be understanding with frustrations that might seem trivial.
When you can’t do something because your body doesn’t work right, facing that reality every day is no trivial matter.

Communication doesn’t always mean talking with your voice.
Be open to listening to body language and behavior. Behavior can be communication. It takes time to help persons with disabilities understand their feelings and give them names. Once feelings have names they are easier to communicate.

Pray with the person you are providing pastoral care for.
Prayer helps beyond words and it reinforces what it means to care for another person.

“When the cares of my heart are many, your consolations cheer my soul” (Psalm 94:19 NRSV). Pastoral care for individuals with disabilities many seem challenging at first, but remember that the people you are caring for need the same respect, love and attention as anyone else. The techniques might be different but God’s love shines through in the same way.

Besides serving on the PDC Leadership Team, Sarah was part of the task force that produced the 2006 disability policy, Living into the Body of Christ: Towards Full Inclusion of People with Disabilities. The policy can purchased through the Presbyterian Distribution Service, (800) 524-2612. Please specify PDS order #OGA-06-091.

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