Habitat for Humanity Helps Brothers Attain a Home of Their Own

Once there were two little boys with muscular dystrophy. As youngsters, brothers Paul and Glenville (Marc) Marcum attended school, fished in creeks, and played outdoors with toy cars and tractors. They began to use wheelchairs in their early teens and continued to enjoy playing pool and attending parties.

Paul Marcum sitting out in front of his new house

Against this Norman Rockwell-like background were two boys who had received diagnoses of Duchenne muscular dystrophy at ages 3 and 7, and initially weren't expected to live much past 20. Their physical abilities steadily declined, and Paul experienced respiratory insufficiency at age 25 and required a respirator. While Marc was able to live independently with relatives at times, Paul remained at home with his parents.

So the Marcum brothers, who both now use power wheelchairs and ventilators, felt that owning a home of their own wasn't so much the American dream to which they could aspire, as an impossible dream they'd never attain. But, with the help of Habitat for Humanity and other community groups, the two moved into a new home adapted to their physical needs in late April.

A Community Effort

Like an old-fashioned barn raising, the effort to construct a fully accessible home for Paul, 33, and Marc, 37, has brought together many members of their community of Ostrander, Ohio. The house on Ostrander Road may be the first built by Habitat for anyone with a neuromuscular disease.

"It's been a real self-esteem booster," says Paul Marcum. "Just the chance to be homeowners and get everything done right is very important to us. It's been very uplifting. You don't realize how many people care until you get in contact with them. We've had an incredible amount of donations." In addition to labor and construction supplies, contributions include furniture, appliances and cash totaling about $2,000.

The project also involves a unique partnership among Habitat, local and international Lions Clubs, and the Delaware County Board of Developmental Disabilities.

Started last July with a grant from the Delaware County Lions Club, the venture soon gathered momentum. The 1.5-acre home site was donated by a mining company, and a local architect contributed his services (worth $6,000) in drawing up plans for the home. A local supplier discounted by two-thirds an electrical generator that originally cost $6,000, with much of the remaining $2,000 supplied in a grant from the developmental disabilities board.

Neighbors have dropped by to pound nails and hang windows; church members built a storage shed and supplied meals for workers; an elementary school group, accompanied by the Ohio governor's wife, Hope Taft, put in a raised flower bed.

"We've had quite a few groups and individuals who have come together," says Bob Noble of the Delaware County Habitat for Humanity. "That's part of what Habitat's all about, but this has been one that's really enabled us to come together strongly in the community."

The experience of building a home for the Marcums has prompted the Habitat affiliate to pledge that in the future 25 percent of its homes will go to people with disabilities.

Abilities Put to Work

Habitat for Humanity International is a nonprofit Christian organization dedicated to providing quality, low-cost housing to those who otherwise could not own a home. Since 1976, more than 30,000 houses in the United States and 70,000 overseas have been built by Habitat volunteers. Using donated materials and volunteer labor, Habitat builds houses that it sells at no profit to homeowners, who are selected on the basis of need, willingness to perform a share of work and ability to repay the loan. In the case of the Marcums, Habitat adapted their share of work to their abilities.

Bob Noble of Delaware County Habitat for Humanity (left) demonstrates the ceiling-mounted lift system installed for Paul Marcum and his brother Marc .

"They don't give the house. You have to earn it. We obviously can't pound nails but there are other things we can do," says Paul Marcum. He and Marc spoke at meetings of community groups to raise awareness of Habitat's involvement with clients with disabilities. When the parcel of land they wanted was discovered to have been zoned industrial, the pair made phone calls and attended zoning board meetings to get it rezoned to residential.

One challenge in Habitat's partnership with the Marcums was that, although Habitat homes offer some accessible features, such as stairless entry and wider halls and doorways, the Marcums needed further accommodations. An exterior entry ramp and 42-inch wide doors for their power wheelchairs raised the cost of the home, but Habitat and other agencies were able to work out an agreement.

"The arrangement we have is we will build to the cost of the typical Habitat House," Noble says. "Then the adaptations that increase the cost, the local Board of Developmental Disabilities and other agencies are picking up those added expenses."

The value of the house is $65,000; monthly mortgage payments will likely fall between $310 and $375, to be repaid over 20 years. Habitat requires its homeowners to keep a home for at least 10 years.

The three-bedroom, 1,200-square-foot structure is just 200 yards from the house owned by Paul's and Marc's parents, Glenville (Red) and Loretta Marcum. The single-level dwelling features such adaptations as a roll-in shower and an overhead track-and-pulley lift system to help the brothers transfer from bedroom to bathroom.

An exterior ramp provides access to the indoors, and a backup generator will keep the men's ventilators going in case of a power outage. Two of the three extra-large (12-foot-by-17-foot) bedrooms include picture windows and wall-mounted television sets.

Home health care worker Beverly Johnson, LPN, assists Paul Marcum in his new kitchen.

An Independent Life

Paul is employed 20 hours a week in account billing at the developmental disabilities board. Marc is working toward employment in a similar position. The two initially gained computer skills on machines provided with county funds in the mid-1980s, but it wasn't until the time of Paul's 1993 tracheostomy that the brothers became aware of additional resources available to them. They were able to obtain an IBM-compatible computer and start developing more marketable skills. Although they took computer classes at vocational school, they're mostly self-taught.

There was a time in their lives, though, when none of this seemed possible.

"At one point we had both agreed we would never go on ventilators, but when the time came I decided I had unfinished business. So I decided to get the tracheostomy and be put on the vent," says Paul.

He adds, "It's like I've had two separate lives. One was pre-trach and one was post. My life has been better than it was. Through thick and thin it seems like the Lord has been with us in helping us get this far, and I feel blessed to be alive."

Like Paul, Marc has some use of his arms and hands, but unlike his brother, Marc is able to spend a few hours a day off the respirator. Day-to-day care currently is provided by their mother, but the Marcums now have assistance from a home health agency, with their mom as an emergency backup. They look forward to giving their mother time off from duties she's faithfully performed for years. She, too, has been with them throughout their long journey to independence.

"We have had so many ups and downs and disappointments that I never imagined [it would happen], even though I wanted it really bad," says Paul of the independent life ahead of him. "If you would have told me four years ago, 'You will have been working for 18 months, you will be moving into a new house that is designed and built just for you,' I would have said, 'no way.' I just wouldn't have believed the concept.

"It's made me believe more in myself, that I can improve my situation. I have done things I thought were impossible, so who knows what's next?" For the Marcum brothers, the house on Ostrander Road is proof that some dreams really do come true.