BernieХs Legacy

Editor’s Note: Instead of simply offering an article on how to make your facility accessible to all populations, we decided to provide this first-person narrative on how important these features are to the people who use them. If you’ve ever struggled with meeting the sometimes confusing ADA requirements and pulled your hair out trying to figure out how to be accessible and in budget, this story might help to keep you charging forward, secure in the knowledge that the service you’re trying to provide is, to the right person, more valuable than gold. Enjoy!

“Are you insane?” was our friend’s standard response when we would load up for yet another camping adventure.

“Quite possibly” was my standard reply.

“Do you know what could happen to you? There are people out there who might steal from you, take advantage of your (husband’s) disability, or worse. Bernie can’t protect you or himself.”

Aha--a whole scenario of “what ifs.”

But there is another side to that coin. What if I hadn’t taken the chance while Bernard was still able to get around with a cane, then walker, then wheelchair, and finally an electric wheelchair and lift to get us out to experience what he really loved? Our life together would have been shallow and cardboard-tasting if we stayed home watching television.

One of our great loves was the outdoors. We were determined to live as fully as possible for as long as Bernie was alive. Sure, his steady decline as a result of multiple sclerosis at66 was in the back of our minds, but the “what ifs” of the disease made other worldly concerns inconsequential.

So there you have it. Bernard Mulville, my late husband, was an architect who had the same reverence for Nature as his mentor, Frank Lloyd Wright. He fondly reminisced about his time as an apprentice at Taliesin West, where he lived in a shepherd tent while completing his studies.

To not experience life was not an option.

Howling At Squirrels

One of the things I did early on was to purchase a Honda CRV, a small four-wheel-drive vehicle. It held all the equipment we needed for our excursions, and later, as Bernard’s condition worsened, it gave us access to more remote, private campgrounds.

The first time we heeded the call of Nature, our dear friend John Nelson accompanied us--driving and assisting with “men’s room issues.” John helped lift Bernard out of the car, position his walker, help set up the tent, and was on call for general campsite duties (fire-building and compassionate listening).

For our trial run, we stayed at Hannagan’s Meadow Campground in Alpine, Ariz., located in the east central portion of the state. It is an amazing area in the heart of the White Mountains. The beauty is startling in its evergreens and quaking aspens. I’d never seen the latter. The air was so fresh (at 9,100-feet elevation), I gulped it in--a much needed respite from the air pollution of our hometown of El Paso/Juarez, Texas.

The wonder of it was that we had come from the desert, just a few miles away, where it was 102 degrees (mid-July), and at the campground we could see our breath at 4:00 in the afternoon.

Daisies covered the meadow, thousands of them, and we heard wolves howling at night. (We missed the sign telling us we were a quarter of a mile from a wolf recovery area.) The first morning, Bernard peered out of the tent and was promptly bonked on the head with a fresh, green pine cone, compliments of the resident squirrel.

We were happy to be there, even though accessibility wasn’t the greatest--no sidewalks to the facility or from parking to picnic tables to tent site, but we did not expect there to be. We did the best we could with what we had, and paving would have upset the aesthetics of the area. Luckily, the restroom was accessible.

Bernard was still able to walk 40 to 50 feet with use of a cane, which was sufficient. John’s arm or my shoulder was ever at the ready for extra balance.

Zonin’ In Zona

Our next adventure was to take off and tour some of the Arizona sites that had meant so much to Bernard during his growing-up years. Our first stop was Canyon de Chelly National Monument near Chinle, Ariz. (northeastern edge of the state). This is an area where the Navajos are still living.

At strategic overlooks on the canyon rim, the Navajo sheep and fields are visible far below (the canyon features sheer, 1,000-foot walls). We had the option of taking a tour bus into the canyon, but for us, that was an iffy proposition. Getting Bernard on and off the bus, with unknown restroom accessibility and the ever-present worry of falling (Bernard would often be a dead weight for half an hour or so after a fall), influenced our decision. We would avoid the bus tour.

Luckily, there was a campground near Chinle (the gateway city for the national park) downhill from the tourist center for Canyon de Chelly. It was relatively cool for June (a real consideration for those with multiple sclerosis--heat can bring about collapse), the restroom facilities were accessible and campsites and picnic tables were near parking. It was a bit crowded, but that turned out to be a blessing, as occasionally we needed help.

Shortly after arrival, Bernard fell while trying to get into his folding chair with attached footrest. Two kind gentlemen from the RV space behind our tent came to the rescue. One was a musician, the other the assistant principal at the high school in Chinle. The musician stayed for dinner and chatted with both of us at length about architecture, synchronicity and the spiritual nature of things. He helped us out several times during our stay--in thanks we bought his CD, “Zonin’ in Zona.”

With a bit more experience under our belt, we left Canyon de Chelly and moved steadily towards our next stop, Meteor Crater--sight of an actual meteor impact in the desert by Winslow, Ariz.(35 miles east of Flagstaff). The facility was excellent and very accessible. Unfortunately, high wind closed the crater, so we weren’t able to go down to the bottom. I have no idea if the bottom of the crater was accessible to us or not and never bothered to inquire. We had miles and to go before we slept.

Our next stop on the Arizona tour was the Grand Canyon. There were plenty of paved pulloffs so Bernard could get out and see the canyon, and the facilities along the route were all very nice. Over the canyon was a haze, something Bernard said was not there when he was a kid. The only way down that I could see would have been by helicopter. Although I didn’t look into this, rafting the river once we reached the canyon floor might have been a possibility.

Our last stop was a two-night stay at Lyman Lake State Park in St. Johns (northern portion of the state). The lake was created as an irrigation reservoir by damming the Little Colorado River, which, according to the state park Web site, is fed by the snowmelt from the slopes of Mount Baldy and Escudilla Mountains--the second and third highest mountains in the state.

This lovely little campground offered paving from the parking lot to the campsite and covered picnic tables on concrete pads with a wall designed to block prevailing wings. Very nice. The lake itself was small but beautiful, a nice respite from the surrounding desert and, of course, the stars were luscious. The best part? The restrooms had shower facilities--nice, large, accessible showers. What a luxury!

Splashdown Aborted

Water was always a challenge for us. On a trip to Florida to visit grandchildren, we decided to go to the beach. Unfortunately, I couldn’t get Bernard from the parking area to the water. Our equipment, a resin chair and a walker (he never had the coordination to twist around to use one of those walker chairs) weren’t enough to get the job done.

All he was trying to do was wade and feel the tide touch his feet one last time, but it wasn’t to be.

It was a scary situation (this was shortly before he became bedridden). The beach was deserted, and I didn’t have the strength to get him to the car. Help came just in the nick of time--it took three of us to get him to and into the car. Later, I searched the Internet for a beach that had some type of accessible water but to no avail. At the time, it appeared Bradenton/Sarasota didn’t offer beach access.

Why is this happening?

As time progressed, we focused our adventures on more primitive camping areas because Bernard’s disability required, more than anything else, privacy. The distance to amenities became a moot point (he really couldn’t use them anyway). At those times and places, the beauty of Nature was a soothing, healing balm for our souls and our sobbing at life’s unfairness. The stars twinkled in solace as we asked why. Why Bernard? Why me? Why us?

Perhaps the answer was in the prayer we took from the book A Course in Miracles, the same prayer we spoke the day we met: “I am here to be truly helpful.” Of course we prayed it in the plural, “we.”

As we travelled, we couldn’t help but notice things that worked and things that didn’t in all the campgrounds, road side rest areas, parks and other facilities. Maybe giving my ideas to those in a position to bring about change is why.

Simple things, like parking near restrooms or reminding designers that those long “gentle” grades are brutal on someone with limited muscle function and on those of us who are pushing uphill someone who is 200 pounds.

Over and over again we saw frail people using walkers and canes trudging long distances from parking space to facility entrance because the cutaway was more easily put at the end of the parking row than near the entrance. It was heartbreaking to watch.

The heavy doors were often the proper width, but they were so hard to manage while trying to propel a chair. I still cringe at my feet being run over numerous times with the manual chair and then the electric chair--and remember muttering a silent “!@#$%^.”

When I first saw and used a privacy barrier instead of a door, I did a dance right there in the public restroom, ignoring the looks of the other patrons who thought I was clearly crazy.

“Quite possibly,” I thought as I danced to the stall.

Angel’s Turn

In the end, all I know for sure is that there are many wonderful angels out there, whether I’ve met them or not. These angels helped me lift Bernard when he fell and I felt most helpless. They pushed him into men’s rooms and assisted him before I had the courage myself. They helped with the loading, unloading, setting up of tents and pushing the chair up those gentle grades when I was bone-weary and unable to go on.

They always appeared, right when I needed them the most. Lately, these same angels have been working to create more accessibility equipment and tools. They have been building boardwalks into wilderness areas that are easily traversed by folks in wheelchairs.,

California and other states now post notices on restroom doors warning that members of the opposite sex may be in the restroom assisting a person with a disability. Florida and other states are building separate family facilities where needs can be met with dignity. Things are looking up.

Heroes, Apply Here

These adventures took place from 1998 through 2002. Since that time, I have noticed many positive changes in making our society accessible to all. I remember when we had a very real concern for Bernard’s needs and, at the same time, understood there was a real challenge to open up any area to people with disabilities. It’s difficult to accommodate all types of disabilities, and from our viewpoint, we understood that what works for one type of disability may not work for another.

Bernard was an architect and actually helped create accessibility codes years before he knew he had multiple sclerosis, so we knew the challenges one faces in trying to decide what to provide access to and how to do it.

Here are some things you might want to consider--ideas we thought would be valuable and doable:

·Consider having an all-terrain wheelchair available on a first-come/reservation basis.

·If possible, provide one paved area with a picnic table and/or campsite, available by reservation or first-come, first-served basis.

·For lakes, consider offering a pontoon boat with a lift. We made use of one on the river walk in Tempe, Ariz., to great effect.

· Also, consider offering a boardwalk or paved path to the water’s edge.

·Be cognizant of all grades--even gentle grades can be overwhelming.

·Doors, even electric doors, are often barriers to be crossed. If possible, find alternate solutions, such as privacy barriers.

·Provide accessibility information in easy-to-find places (Web sites, brochures, signs, etc.).

·Post signs on restroom doors notifying patrons that they may encounter members of the opposite sex helping a disabled person. This puts both the helper and the other patrons at ease.

·Put the parking lot cutout as close as possible to the facility, even if it costs a bit more or is not as convenient. That extra 40 or 50 feet may not seem like much to an able-bodied person, but it can be completely disheartening to a person with disabilities.

·Recognize that people with disabilities understand you can’t ruin the attraction/natural wonder in an attempt to make it accessible. All they ask is that you try your best.

·Train your staff to be angels to the disabled. Often a kind word or gentle push can make the difference between a good day and a bad day.

Opening up Nature to allow for more access gives people with disabilities further room for growth, challenge and respite from the everyday. The fact that our parks, campgrounds and other public facilities are becoming more accessible makes us a less exclusive society. It opens our children to the idea that people with differences are valuable. It refreshes the hearts of adults to see there are people who care and do something about these problems. Keep up the good work and thanks for trying.

Sheryl Billman is a freelance writer in Medina, Ohio. She can be reached via e-mail at sheran8@msn.com