Several months ago, I began to publish the “What Can I Do?” series of interviews featuring individuals responding in their own unique ways to assist persons with intellectual and developmental disabilities. In this interview, I would like to introduce you to Eric Swierczek. Eric has an important story to tell from the perspective of one who, after years of a successful business and an active life, began to experience physical difficulties and was eventually diagnosed with spinocerebellar ataxia type 1 (SCA1).
Eric’s story of growing to accept his disability helps us understand all disabilities in a way distinct from those who experience disability from birth or early in life. Rather than passively accepting his SCA1, Eric has created a ministry called Pocket Pine Hill to help others, especially in understanding—from the perspective of a person with a disability—how attitudes change and how accessibility and full inclusion become a matter of justice.
Mark Bradford: Eric, I want to thank you for your willingness to share your story. We typically address issues that affect the intellectually and developmentally disabled community, but I think you have so much to offer in helping us understand the perspective of one who has experienced both an active, unimpaired life and now with a significant life-limiting disability.
First, would you mind sharing a little bit about your disability with us—when you first began to notice its symptoms, your diagnosis, and then the experience of accepting your diagnosis?
Eric Swierczek: I was diagnosed with spinocerebellar ataxia type 1 (SCA1), which is a genetic disease included among a group of inherited diseases of the central nervous system. Related diseases are Parkinson’s, ALS or Lou Gehrig’s disease, and Huntington’s disease. With my condition, genetic mutations lead to major problems for the nerve fibers that communicate with the brain, causing the rapid degeneration of the cerebellum, which is the motor coordination center of the brain. My diagnosis was made through a genetic blood test in 2017.
The genetic mutations responsible for SCA1 are passed on from family members who carry it; in my case, it was my father’s side of our family. Each child of a person with SCA1 has a 50–50 chance of passing on the gene from one generation to the next. The disease tends to strengthen as it is passed along, so being the youngest in my family impacted thus far, I get another gold star!
Accepting the diagnosis itself was easy for me since I was able to comprehend what changes would need to be made.
The first symptoms are usually incoordination of the hands and trouble with balance when walking. In fact, the word ataxia means “incoordination.” As SCA1 progresses over a period of several years, difficulty swallowing and slurred speech are common. In some cases, individuals develop additional symptoms such as neuropathy (loss of feeling and reflexes in the feet or legs), spasticity, weakness, eye movement disorders, or memory problems.
In my case, my progression has led to these losses of movement:
- From using a walking stick, then a walker, and now a wheelchair for any outdoor trips.
- I had to give up golf—I used to be able to play at a very high level—all sports, and any exercise routine using motor skills.
- I sold my financial planning practice and began a disabled status.
- The outlook is grim for my condition at this point, as the disease continues to progress.
My acceptance of ataxia took a very long time to happen. My job was quite demanding, but I was able to manage the condition since it was my business, and I had more flexibility than others. I was up-front with my clients, and they were all aware of my condition, but 2023 found me unable to continue working due to the condition, and I retired and merged my business with a larger firm in my industry.
Since ataxia has no cure or treatment options currently available, and because the disease progresses daily, many afflicted people choose to end their lives. My strong faith in God allowed me to understand suffering better than most, so I didn’t choose that.
Many people find it difficult to approach people with disabilities. What has been your experience? If you don’t mind, would you share with us the reactions of those around you and how your disability has impacted or changed your relationships? Are people you encounter comfortable speaking with you about your ataxia, or do they try to avoid the proverbial “elephant in the room” with small talk and evasion?
SCA1 is not a common condition. According to the National Ataxia Foundation, only one to two people for every 100,000 will develop this condition, making it a disease that is somewhat unknown even to those working in the medical field.
Many people do not have a sympathetic view for my condition. At this advanced stage of the disease, even though I may appear slightly compromised, my physical body is probably thirty years older than my age. Many friends and new contacts do not understand the devastation that I am facing. I can think of only a few conditions that even begin to rival SCA for severity, longevity, and the depth of suffering it causes.
Accessibility must be viewed as an ongoing commitment of a parish rather than a one-time effort.
I am also convinced that ataxia is a lonely and isolating condition. Most of my older “friends” left me because I couldn’t play golf, travel, or join them for a beer. New people I meet are afraid of my disability because they think they may say the wrong thing, and that adds to my loneliness. One of the reasons we started our ministry, Pocket Pine Hill, was to help disabled persons because of this finding. I honestly believe that we are misunderstood as a group, but I proudly say that God loves me and being in a wheelchair does not define who I am. We have joined a new parish that has embraced us as people, not as problems, and we know the difference.
Eric, you have become active in working to raise awareness of the needs of people with disabilities. I would first like to ask you about any general observations you may have that point to general attitudes to overcome and your suggestions of how to do that. We’ll get to more specifics next.
The heart of our ministry is to remind churches of what should be evident: that everyone only feels they fully belong when they have clear access to the opportunities all members of the parish family freely enjoy. This includes uncomplicated entry and needs-based use for gathering spaces and restrooms. When the distinct needs of each person are met, everyone can build relationships and offer their unique gifts.
Accessibility must be viewed as an ongoing commitment of a parish rather than a one-time effort. Churches should establish guidelines and appoint individuals to be responsible for continual assessment of accessibility.
Education about disability is key to positive change; even small improvements will be noticed and appreciated. Compassion and patience are essential to the creation of a welcoming environment for all.
Jesus said, “If anyone would come after me, he must deny himself and take up his cross and follow me” (Matt. 16:24). The further a congregation walks down the road of inclusion, the greater the cost and the more difficult the process may be, but the rewards will be greater still. Discover the joy. God doesn’t make mistakes: “God has arranged the parts in the body, every one of them just as he wanted them to be” (1 Corinthians 12:18). As we fully include all whom God has brought into his Body, our joy is made complete, and our ministry is made whole.
We join the Holy Father in calling for actions which “ensure that the power of salvation may be shared by all” (John Paul II, Tertio Millenio Adveniente 16).
Okay, now the specifics. If you could change only two or three things in the Church that you experience as solvable challenges, what would those be? Also, most people are never put into the position you have been to experience these challenges directly. How can we reach and turn the hearts of people like you—non-disabled prior to your diagnosis—and all those who may not believe that disability should be their personal concern?
These are the initial specific changes that I would recommend:
Start with Kindness
Few people are intentionally unkind. But often, disabled people experience unkindness even in churches. As someone who is disabled, I have been treated kindly, and I have had my needs seemingly ignored. When we are kind to others, we are kind to God. Greet people with disabilities warmly, even those who cannot respond with words. Ask the person who is using a walker how you might help them. Greet the woman with cognitive impairment and use her name. Ask the mother of an autistic son what life is like, then really listen. I would love to have anyone ask me about my condition. It doesn’t cost much to make someone feel welcome.
Schedule a Regular Accessibility Assessment
A first step to enhancing accessibility is evaluating all existing physical facilities. Churches must regularly conduct thorough assessments of their buildings and grounds to identify potential barriers that might hinder elderly and disabled members:
- Entryways, seating arrangements, restrooms, and any other commonly used areas
- Follow up with topic recommendations from ADA.gov
By pinpointing any obstacles, parishes can prioritize necessary modifications and allocate resources efficiently. If needed, companies are available to help conduct an accessibility audit for a fee. For example, an organization founded in 1982, the National Catholic Office for Persons with Disabilities, offers the blending of justice and inclusion for the disabled based on documents and teaching from the Catholic Church. A copy of the full assessment is accessible on our website.
Our brochure provides instruction for the parish greeters. Anyone can begin to use these educational tools when interacting with the disabled public. These are the basics:
- Introduce yourself to every person who appears to be disabled.
- Ask how you can be of help.
- Explain where the restrooms are and provide beneficial seating arrangement options.
- Ask if they would like to have the Eucharist brought to them and make sure it is.
- Inspect the entry points before every Mass.
- Make sure the walkways are clear from snow and ice.
- Inspect restrooms each weekend.
- Offer a doorstop if the church does not have power doors.
- Inspect parking areas and entry ramps before each Mass.
A few last questions, Eric. What is the most significant lesson you have learned since your ataxia diagnosis, and what is the most helpful thing anyone can offer to those who are experiencing disability? Also, what advice would you give to others who may be at the beginning of their experience with ataxia or any other life-limiting disability?
The greatest change that I experienced is a growing belief that God loves me and allowed my suffering (disability) for a reason. I miss doing the activities that I took for granted but realize that having ataxia allows me to share in Jesus Christ’s suffering on the Cross. I realize that I am merely passing through this life and a far greater place or prize lies ahead. Scripture is full of stories that speak of the nature of God, and he wants me at his wedding banquet. If my work helps just one soul to attend that banquet, it is all worth having SCA1! I truly am blessed.
Eric, thank you again for your openness in sharing your experience with us. I know you have a website. Would you like to share what people can find there and how people can follow your journey?
Sure, we call our ministry Pocket Pine Hill, and our mission is to promote an awareness of disability and encourage the Church family to implement easy changes that can help make everyone feel welcome and wanted. We’re still a very young organization, but I encourage people to subscribe to our updates if they would like to follow our progress and support our efforts. By joining us, it helps to promote greater inclusion through accessibility. The website is PocketPineHill.org.