Living with a disability is complex, especially in the church. You want to be accepted in your congregation for who you are, but not everyone will take the time to understand your perspective. Because of this, you are cautious about whom you open up to. You want to be known and asked questions about your life beyond those related to your disability. You don’t want it to define you.
My faith has helped me accept living with moderate cerebral palsy and other chronic conditions. At various times I’ve used a walker, forearm crutches and various orthotics, and a push wheelchair to navigate the world. I also used a Segway to get around my college campus.
What I struggle to accept are the misconceptions I encounter because of my speech difference. I’m hardly ever sure of the first impression I make in either a job interview or a social setting. Some people mistake me for having an intellectual disability, which is disheartening and emotionally painful. Some people pat me on the head as if I were a young child rather than an experienced young woman who happens to be diminutive and living with a disability.
I work as a disability advocate, public speaker and freelance writer who covers healthy living. In my professional and personal life, I’ve encountered people outside the church who believe that people with disabilities are hired for positions only so management can take advantage of a tax credit. We want to be hired because our skills and talents match the direction of the potential employer, not because it looks good or provides tax benefits.
Some people pat me on the head as if I were a young child rather than an experienced young woman who happens to be diminutive and living with a disability.
I’ve even been told that my nondisabled peers only befriended me to look better within society. I want to be considered a friend because of the kindness, empathy and humor I share with others, not as a charity case.
I used to get frustrated with the comments and questions of new acquaintances, but I’ve learned to be courageous and share life experiences because people are just curious about what it’s like to live with my physical disability and other chronic conditions. I’ve learned that I have the right to stop the questioning when they get too personal too fast.
Emotional healing from these misconceptions has been tricky. I find comfort in God’s word and in worship. One Bible verse I lean on is Romans 8:28: “We know that all things work together for good for those who love God, who are called according to [God’s] purpose.”
I know God has a plan for how to use me to impact the world around me.
Welcomed, cared for, loved
The first time I told my life story as a woman with a physical disability was when I was inspired to speak at a Reconciling in Christ (RIC) committee meeting at my congregation, All Saints Lutheran in Palatine, Ill. I spoke in support of our congregation declaring ourselves as welcoming to all people, regardless of sexual orientation or gender identity.
The experience was energizing, but I worried about whether the committee would accept my persistent spirit.
We created the RIC statement to help our congregation become a more friendly place for people who identify as LGBTQIA+, people of color, people of various socioeconomic classes and people overcoming life trauma. I wanted to make sure that All Saints refreshed its commitment to be more hospitable to people with disabilities, chronic conditions, mental health issues or past trauma.
I’m educating All Saints’ leadership about accessibility in the church building and on the website so our congregation can become more openhearted and approachable to folks with disabilities. I’ve asked congregational leadership to consider designating a gender-neutral or family bathroom to accommodate people with disabilities needing help from their caregivers and provide a space for people of various gender identities.
We’ve also discussed language. Understanding courteous language is a great way to be more gracious to potential members who have disabilities, chronic conditions or mental health issues. People with disabilities may define respect as “person-first language” or “identity language.” This means not labeling individuals with the conditions they may have.
When I was younger, I thought my difficult experiences with disability, along with family tragedies, made me too complicated to be understood, loved or cared for sincerely and honestly.
It’s a personal choice. I strongly prefer to be defined as a person, with my disability diagnosis secondary. When you’re speaking about someone, placing them first and their disability second can foster pride and confidence in the individual.
I believe the wider church should try to find ways to include, without pity, folks with disabilities and/or chronic conditions. Most of us aren’t hoping or praying for a full cure. But we do appreciate your prayers and good thoughts when we are going to the hospital for a test, procedure, surgery or appointment.
When I was younger, I thought my difficult experiences with disability, along with family tragedies, made me too complicated to be understood, loved or cared for sincerely and honestly. I’ve come to see that living with cerebral palsy and other chronic conditions has given me inner strength, resilience and empathy for others and their personal stories.
I have finally learned that God sees me as a beloved child, and that my life is a gift to others.