Reflection: Design can aid the incapacitated with style and warmth | St. Louis Public Radio

Reflection: Design can aid the incapacitated with style and warmth

Jul 26, 2013

This article first appeared in the St. Louis Beacon We baby boomers have breathed the sweet air of invincibility so long that when something goes wrong with our finances or our family relations or our bodies we are shocked, shocked, to realize that rather than invincible, we are, as were all generations before us, quite vulnerable. So what should we, the children of the greatest generation, be doing?

We have been pretty diligent about exercise, and (perhaps too late now) have responded to the constant reminders about getting our financial ducks in a row. One consideration more liable to relegation to the attic of denial is incapacitation. What if? What then?

A surprise unnatural disaster put my partner and me out of our apartment for a couple of months recently, and in the process of putting things right again, we made entirely felicitous improvements. The result is a dwelling considerably more comfortable and accommodating than before. I have one regret and it’s serious. I’m sorry I didn’t talk to Liz de Laperouse and Michael Houlihan about Universal Design before we began our renovation.

On a fundamental level, the definition of home has to be more than spaciousness or beauty. Putting taste aside, the qualities of utility and accommodation are more essential. All the rest follows and all the rest is embraced by the practice of Universal Design – also known as Better Living Design.

Recently, the Starkloff Disability Institute was co-host to the Universal Design Conference at Saint Louis University. Colleen Starkloff, and her late husband, Max, and lawyer David Newberger, founded the institute in 2003. Its purpose is to work “on changing society’s attitudes about people with disabilities through activities that send a positive message about living with disability in order to create a world that welcomes disabled people.”

In a Beacon article that ran at the time of the conference, Starkloff defined universal design as “the design of products and spaces to be usable by the greatest number of people with the least amount of adaptation and design.” She uses the Better Living Design name because it suggests it’s for everyone, and perhaps moves the practices away from the stereotypes of disability design. But then, as she noted, so does the embracing term “universal.”

It’s easy to dance around planning for a disabled future by arguing that for most of us obstacles generally are mutable. I talked about this at breakfast the other day, and the subject was changed faster than you can holler HELP. After all, a slippery rug can be fixed with a pad. Good lighting reveals the sleeping dog essential to Grandmother’s breaking her hip. Furniture? The words for the furniture in Italian are i mobili. Just move it. And while you’re at it: Change the subject, right now. Nothing like this, nothing disabling, is going to happen to ME!

But will it always be so?

Sixty-two-year-old Michael Houlihan can tell you, “Not necessarily.”

Houlihan said he had a hitch in his gait when he was in high school and noticeable stiffness since 1984. In 2002, he was diagnosed with hereditary spastic paraplegia at the Mayo Clinic in Rochester, Minn. The condition is defined by the National Institutes of Health as “a group of inherited disorders that are characterized by progressive weakness and spasticity (stiffness) of the legs. Early in the disease course, there may be mild gait difficulties and stiffness. These symptoms typically slowly progress so that eventually individuals with HSP may require the assistance of a cane, walker, or wheelchair.”

That is where Houlihan is these days, in a wheelchair, not the sort of conveyance he imagined when he was a kid growing up on a farm in Ellisville riding horses, sometimes every day during summer vacations. “We could get on a horse ride all day and cross through properties by way of the gates that controlled the animals in their pastures,” he said. “We always honored the responsibility of being good neighbors.”

Gates and a sense of responsibility translated into a desire to open gates for disabled men and women and for clearing obstacles of all sorts out of the way. Houlihan’s background is in landscape architecture. He looks at the world with the eye of a designer, and it was with such as perspective he went searching for a new house when his condition began to worsen.

His looking took him to his current home in Clayton. He said a significant part of the appeal of house could be summed up largely in on word: flat.

The house was also large enough to accommodate an elevator, and an office for Houlihan. He and his wife Mary, who is chief operating officer of the St. Louis Public Schools, worked with architect Patrick Croghan of Heine & Croghan Architects to create an exemplar of universal design yet free of the stereotypical features that scream “accessible” – metal ramps, grab bars and so forth. It meets criteria Colleen Starkloff describes as design that works for everybody – and design everybody wants.

Houlihan and de Laperouse call their work and their company “Homes Without Limits.”

Elements that create this environment are extraordinarily subtle. You wouldn’t know, I’ll wager, the Houlihan house is a universal house. Houlihan knows, however. He demanded this house provide for living a full life so long as he lives there. He told me a lot about his life in the course of our interview. One particularly affecting story is about his Aunt Maggie, who in old age was cared for by relatives in their home. Aunt Maggie lived in a bedroom on the second floor, and eventually that room defined her world, and became something of a trap.

“To me,” Houlihan said, “it was better than a nursing home because she was surrounded by family who loved her. However, having a home without limits” could have made it easier for everyone.

Houlihan had no intention of accepting such a sentence. And indeed he calls such limitations “prisons.”

Home Without Limits is a for-profit enterprise. Its goal is to offer consulting services such as audits, that determine the scope and needs of disabled clients, and design programs as well.

And part of its mission is to convince people such as me that doing the work before the onset of a disability is smart, and done intelligently and well it is improvement that is not only part of a virtually invisible organic whole but also offers the possibility of liberation.

The costs vary.

In new construction, Houlihan says the additional costs, without an elevator, add 1 to 3 percent to the cost of the construction. The extra money needed to create a “visitable” house, Houlihan said, is negligible. (Visitability, according to the Indiana Institute on Disability and Community, is “a home construction and design approach that incorporates basic accessibility into all newly built homes and housing. It's thinking about home construction so that anyone can visit anyone else's home.”)

Houlihan says making an estimate for a renovation is difficult with seeing existing conditions.

“Every consideration begins with space and elevation. Is there enough space to install a ramp with a gradual enough slope? Are the doorways wide enough for a wheelchair and can a wheelchair turn around in the space being considered? Is there enough light, and is storage reachable by someone in a wheelchair? Can one get from the residence to a form of transportation safely and easily?”

Recently a childhood friend was talking on the telephone when the stool on which she was sitting gave way, and she ended up in the emergency room with severe brain damage. A mutual friend remarked, “We are all a banana peel away from disaster.”

Although that is a gloomy assessment, there is plenty of truth imbedded there, especially for those of us who still assume invincibility.

Should the banana peel obtain, and a disability results, what do we do? More to the point, what should we have done before the peel presented itself?

If the difference is clear, and it is between the chance to live in your own home, designed or renovated with for accessibility – in this case a synonym for freedom – or nursing home accommodations, which would you choose?

Here’s what Liz de Laperouse says, and although this is her business, her parting shot rings clear with good sense.

“There is no reason,” she said, “that all of us should not live a full life.”

Raise high the driveway, clubbers

Charles E. Claggett Jr. chairs the board of the Starkloff Disability Institute. In this essay, he recalls his father, legendary advertising executive Charles E. Claggett Sr., who had polio as a child and, in pre-universal design days, experienced routinely the sorts of obstacles that Michael Houlihan and Liz de Laperouse talk about -- and one big one they didn’t come up with, at least in their discussions with me.

Here’s Charlie Jr.:

“As a young man my father developed his upper body strength as a gymnast, which enabled him to get around with only the use of a cane.

As he aged, however, he eventually required crutches and, later in life, an electric three-wheeled cart. Very few things daunted him, whether it was putting on a pair of waders to go duck hunting, which he did frequently during the season, getting into a boat, or climbing stairs. You name it -- he went wherever he wanted to go without seeming to make an effort and never complained.

“One of his favorite places, the St. Louis Country Club, had an eight-inch step at the entrance, which prohibited his entering the front door on his 3-wheeled scooter. For years he rolled around to the back of the club and entered through a back door that had no step. Seeing him do this during a rainstorm one afternoon, his friends decided they should try to find a way to make their club accessible.

“The front door is accessed through a porte cochere, which made a ramp seem impossible: Cars would have to drive over it, and people were likely to stumble over it. The club eventually decided to build a ramp instead through another door at the front of the club, the door to the ladies room! My father, who was not consulted, saw this and announced he would rather stick to his old route ... in any weather.

“It took years before one member volunteered a truly inspired solution: Raise the driveway eight inches in front of the door. It was one of those brilliant, simple and perfect solutions: relatively inexpensive to install, completely invisible, and safe for all.

“These are the kinds of solutions Mike and Liz now do every day.”