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ALS, the ‘blue zone’ & church

ATLANTA (BP) — Sometimes a critical health diagnosis may be short-lived and the patient returns to good health. Then there are times when the news forces an individual to face their mortality.

Amyotrophic lateral sclerosis (ALS) has had an extraordinary amount of exposure due to the ALS Ice Bucket Challenge earlier this year. Today, more people are aware of the disease associated with Lou Gehrig.

But do they understand what it means for the individual — and their family — who receives the diagnosis?

Doctors diagnosed me with ALS in January 2013. That news forced many changes, including career and housing. Having always been healthy, I never foresaw needing a handicapped parking permit, which would allow me to park in the blue zone (the color of a handicapped sign and parking space).

Like many people, I’ve had more than my fair share of skepticism about the people parking in the blue zone. Few look disabled; most just appear to be in a hurry.

But the view from the blue zone is different than the view into the blue zone.

Many people watch you. Mostly they glance, but the experience begins to feel somewhat like a zoo animal on display. Perhaps people are curious to know if your permit is legitimate. Perhaps as citizen police, they desire to see verification of your malady.

Spaces in the blue zone typically are closer to the front door of an establishment. The trick for me is whether van-accessible spaces are available.

I now have a motorized wheelchair and a ramp van. The van is a converted minivan that kneels as it extends a ramp to the ground. That ramp is 3 feet long, and I need a minimum of 2 more feet — preferably 3 — to navigate the wheelchair once I’m on the ground.

If there’s a parking spot designated as van-accessible, there’s usually only one, so anyone with a handicapped parking permit might park there. At other times, someone has taken a clearly marked van-accessible space, though they are driving a car, truck or SUV. This often has happened to me at church.

Due to my health, I resigned a pastorate in November 2013. So we began looking for a new church. Due to relationships, we navigated toward a mega-church near our home.

Like many churches, this one doesn’t have adequate handicapped parking in its huge parking lot. Our Sunday School class is in a trailer, the last one in a maze of temporary buildings, and there is no bathroom nearby. No matter how early we arrive, a car, truck or SUV already is occupying the lone van-accessible slot next to the ramp leading to our classroom area.

I carry an orange cone and, when only regular parking is available, I place it in the open space next to my van. Then I put a magnetic sign on the side of the van door requesting space for clearance. Problem solved.

When we returned after church the other day, however, a driver had parked next to our van. Someone at church had taken the cone, so this driver was unaware. And she failed to read the sign on my van.

I drive from my wheelchair (there is no driver’s seat), so my wife could not move the vehicle to another place. We were at the mercy of the returning driver.

If any institution should be sensitive to the needs of disabled people, it should be the church. To be sure, the Americans with Disabilities Act created hardships and added costs for those constructing or remodeling buildings. But given the aging of our population and diseases like ALS, here are some considerations for churches based not on the law, but on personal blue-zone experience:

— Clearly mark space for handicapped parking with at least one — preferably two — van-accessible places. Please allow at least 6 feet for clearance.

— Bathrooms should have at least one wide stall. Plus, consider the clearance needed for wheelchairs to get to the stalls. Many bathroom doors open to a wall for privacy but that requires a sharp turn. When crowded, that turn can be very difficult. A better solution is to have a bathroom that is solely for handicapped attendees.

— Auditoriums need designated seating for wheelchairs. With permanent pews, there is often no space. Parking in the aisle might not make the fire marshal happy.

Perhaps the best way to accommodate people with disabilities is to ask about their needs. On a weekday, church leaders could invite those with physical challenges to the church and go through their routine.

Life in the blue zone isn’t easy for anyone. But when graciously accommodated, those of us living in the blue zone can be very loyal.

    About the Author

  • Jim Burton