10/17/2025
How can Rural Churches Minister to persons who have Ulchers Retinitis Pigmentosa (RP)?
By Rev. Jerlyn Smith-Hudson
First, let's consider my personal observations
While dating, my now husband (separated) stated that he couldn't see at night. While we didn't go to movies, out to eat, games or anywhere once it got dark, I didn't think much of it being that we were in our fifties, I equated it to how some people say that they don't drive at night. However, I later discovered, it was much more serious than loss of night vision and would affect our marriage drastically.
Once married, in one incident, while cleaning and rearranging some things in his father and mother's house we had moved into from a small apartment, I inadvertently left an end table in the middle of the floor until I positioned the other furniture. He came in and walked, briskly, into it banging his shin pretty badly. He yelled at me and even told his family about it as if I had committed a crime. I didn't realize it then, but later learned that he walks around by memory and needs for things to remain in the same place. Being that he won't use the blind walking stick, nothing could be moved or changed unless he moved or changed it. In another incident, in the home’s narrow short hallway, instead of walking past me, he walked right into me. I didn't move aside because I thought he saw me. I can remember one time when we both stepped onto an elevator, and he yelled my name loudly not realizing I was standing next to him, he has no peripheral vision with RP.
Because of RP, he cannot see crawly things or flying things. So wasp nests and ant beds are hazardous to him. He's had experiences with both, neither of which were favorable!
Then on top of that, he is hearing impaired. Hence the name Ulchers Retinitis Pigmentosa. The name means two senses are impaired. He is deaf/ blind. Every eye doctor he has visited, even at the Emory Eye Hospital, Atlanta, Ga, says there is no cure. Research states that there is no cure. I have seen the sadness on doctors' faces when they tell him “no cure” after he asks them the question “can you help me to see?” It is a progressive disease. I have witnessed parts of the progression and it pulls on my heart! I have been and will continue to be his advocate when doctors and health providers treat him some type of way.
Yet, he remains hopeful! His belief that "they" are not trying to help him is unwavering. The places we go frequently are the hearing specialist and eye doctors. Although I have researched and explained the symptoms, causes, and diagnosis to him over and over, he holds on to the belief that something can be done. I pray that just as sight was restored in Bible days, his sight will be restored in Jesus' name!
Next, Changes in Everyday Living
He expressed that God has been with him throughout his life and talked about many times he could have been killed because he didn't see or hear a vehicle approaching, but God spared his life.
This man has to be working on a job! He feels that working is what men do. He is a former truck driver, which ended when his eyesight started to deteriorate. He loves doing yards and being the handyman for his neighbors but finds it frustrating that his vision won't allow it and has currently given it up. He used to work on kids bikes, and to this day, has a room filled with old bicycle frames and tool boxes.
Then, he is color blind. Matching his clothes and distinguishing good from bad clothing is a frustrating task for him. He can't see holes or tears, discoloration or worn spots in clothing. When we lived together, I would iron and match the outfits, put them on a hanger, and place them in the closet. Just to make getting dressed easier for him. And on another note, he is a great dish washer, because he washes a dish over and over making sure he washed it clean.
One might say “wow, that's a lot!” But God!!!
I share this to say every aspect of his life has changed.
Some troublesome situations:
church gatherings
Seeing people's faces
accessing food/drink area and restroom
Knowing what foods are being served
Entrances and exits
being unfamiliar with the territory (store layouts)
rude behavior from those who don't want to assist
too much help and expressions of pity
Church Gatherings
The fact that I was in ministry when we met had nothing to do with him wanting to "get back in church". He speaks of his father having carried them, brothers and sisters, to church when they were younger. Many times, after attending a service with him, before he got hearing aids, I have had to re-preach a sermon to him. He would ask about the preacher's text, etc… These conversations were over the phone because he hears much better, before he got hearing aids, this way than face to face.
It is through his situation that I started seeking ways churches can minister to the person with disabilities, specifically, RP.
Solution
finding out what they could do efficiently
The Science
Retinitis pigmentosa is a group of hereditary progressive disorders that may be inherited in an autosomal recessive, autosomal dominant or X-linked recessive pattern. Maternally inherited variants of RP transmitted via the mitochondrial DNA also exist.
It is known that some patients with retinitis pigmentosa become virtually blind by age 30 while others retain useful vision until age 80 or beyond. Considerable variability can exist in the severity of disease at a given age even among patients within the same family.
When does it start? Between the ages of 10 and 30, although some people experience symptoms during childhood. Symptoms vary depending on what part of the retina is affected. RP is a progressive disease, but the rate at which vision deteriorates varies for each person.
Ulchers Syndrome
Early Symptoms: Hearing loss or deafness (usually from birth)
Later Symptoms: Loss of night vision and side (peripheral) vision.
Diagnosis: Dilated eye exam, hearing test, balance test, genetic test.
Treatment: Vision aids, vision rehabilitation, hearing aids or cochlear implants.
Some important situations I will focus on addressed in an article in the National Federation for the Blind:
1. What are some challenges or obstacles that hinder satisfying church involvement for people with visual impairments?
Many people suffering with vision related diseases or disabilities want to be useful in church. This man wants to serve in a ministry, but feels no one has time for him or understands his heart.
Point A: A blind person may hear someone they want to talk to, but can't see how to get to them.
A suggestion: Having an es**rt or person that they trust with them at all times will help remedy this problem. Or simply, if members know the situation, then perhaps make it a point to speak or shake hands with that person before leaving worship.
Point B: Being familiar with their immediate surroundings. Things in their area must be situated the same each time.
A suggestion: Assignment a designated seat for that person. Show them,
Point C: Not being able to hear responses from people who speak softly or in a low tone. Having to ask someone to repeat themselves over and over causes embarrassment.
A suggestion: When speaking with the person, speak loudly and clearly.
Point D: They may want to sing and read from the Bible, but can't see the words. Sidenote: larger print may help, but that depends on the progression of the loss of vision.
A suggestion: A person with compassion and patience can teach them songs and allow them to practice singing or reading in a one-on-one situation.
2. How can the church meet the need
For blind church-goers, allowing them to set up a time outside of busy Sunday mornings to get familiar with the building will help them learn to navigate it themselves with confidence. Therefore, giving them a greater chance at feeling safe and empowered to come regularly.
For blind church members, a designated section can be beneficial so they can access braille resources. This type of designated section would also help them connect with a volunteer who can describe parts of the service that would need explanation to someone who is blind or visually impaired (e.g.: a picture or prop being used during the sermon).
3. Connect them to ministry
People who attend church naturally want to get connected to others and have the chance to serve and make a positive impact. One issue to consider is how a church makes it possible for people with disabilities to get involved. Make sure that they, too, have ministry options available to them and that they are encouraged to participate.
Offering a Deaf-Blind ministry will provide opportunities for people to serve in the church (e.g.: greeters, coffee service, IT/power point assistance, nursery duty, if applicable). This type of ministry could also offer events and small groups tailored to the Deaf-Blind community.
Whatever their disability, most are ready and willing to serve, if they know there are opportunities and ways for them to get involved
4. Offer necessary resources
The reality is that people with disabilities can benefit from minor modifications that will make church an easier place for them; and the resources offered can be adjusted, as well. Some other potential resources include:
Braille and/or large print Bibles and bulletins could be made available for the visually impaired or blind.
Noise cancelling headphones are an appreciated resource to SPD or autistic members throughout the service.
It may be beneficial to have someone on staff or a committed volunteer who knows ASL. This will help when a Deaf attendee is in need of prayer, counseling, or mentoring. Hire professional interpreters for the Sunday morning service, but also for the Wednesday evening service and other events your church hosts. This makes it much easier for deaf people to attend events a church offers, to be trained in God's word, and to become part of the church family by removing the language barrier.
In conclusion
A person with disabilities goes to church to learn about Jesus and find a God-centered community. They desire to be seen as an equal part to the body of Christ, not someone broken that needs to be fixed. All are created in God’s image (Genesis 1:12) and all are fearfully and wonderfully made (Psalm 139:14).
Speak directly to church members with disabilities to learn their unique needs and preferences that will make it possible for them to keep attending church, get involved, and ultimately, deepen their relationship with Christ. Whichever adjustments the church is able to invest in and make will certainly be welcomed and valued by those with disabilities.
Source: National Federation for the Blind.
Suggested reading: The Disabled Disciple by Elizabeth Browne.
