Life on Wheels (85 page)

The authors describe four fundamental needs that homes provide:

Privacy. A space of your own and a chance to be left alone.

Belonging. The ability to share spaces with friends and family, to be able to join in preparing meals and social activities.

Control. The ability to go where you want and do what you want.

Safety and security. The ability to move efficiently through the house, open doors, and escape in an emergency.

In the Lifespan model, you evaluate your home, keeping in mind these four aspects and looking for the highest possible quality of life for everyone, rather than simply thinking in terms of getting in the front door and using a bathroom. Each person finds his or her own priorities. This woman moved into an accessible apartment in New York City:

You might resist making home modifications. The process can amplify negative emotions about your disability. Particularly if you have a progressive condition like multiple sclerosis or amyotrophic lateral sclerosis, planning for a future of additional disability can be upsetting. Louis Tenenbaum is a carpenter and building contractor in Maryland who specializes in access modifications. He describes his work with a client:

The philosophy of Universal Design aims to increase independence for everyone in the home, while keeping the home attractive. When efforts began to remove architectural obstacles, terms like
barrier-free
or
handicapped-accessible
design were widely used. These are terms that tend to stigmatize a building, implying it has been somehow compromised or institutionalized. Increasingly, architects and product suppliers are developing alternatives that fit seamlessly into the overall design, with respect for aesthetics.

The late Ron Mace was an architect with a private practice and was director of the Center for Universal Design at North Carolina State University. He had polio as a child. Mace saw that making the world accessible benefits everyone. He saw that the existing terms did not promote integration and, in fact, generated resentment:

Proponents of this philosophy speak of a home where one can “age in place.” As you and your family members get older and encounter any of the variety of physical changes humans encounter, your home can remain friendly and usable for everyone, or at least easier to adapt. And that includes guests with disabilities.

Most people eventually experience a disability of some sort, even if only for a matter of weeks using a wheelchair or crutches. A broken leg or temporary disease could mean being physically limited for months or years. An entrance without steps and an accessible bathroom are suddenly useful at such times. The demographics of the United States are shifting dramatically toward an older population. As you age, you will increasingly value features of Universal Design in a home. You might be able to stay in your home longer, despite an illness that might otherwise mean moving to a residential care setting.

More and more, people with disabilities are out in the world, achieving higher education, pursuing careers, and raising families. These people will be buying homes and deserve a selection in the marketplace. It makes good business sense for builders and landlords to incorporate Universal Design principles:

Universal Design also makes monetary sense. The cost of later modifications is much higher than doing it right in the first place. Wide doors are easily available, and the construction details of water-safe, level, outside entrances have been refined and well proven.

On the other hand, modifying an existing home is likely to be very expensive. You might not be able to afford all of the work it would take to achieve full access. Tenenbaum notes that you often have to make tough choices:

Universal Design also suggests building for adaptability, an approach referred to as
handicapped-adaptable.
With some foresight and simple measures during construction, future accessibility needs can be more easily met. For instance, make sure that walls in bathrooms are reinforced in advance for grab-bar installation. Ron Mace explained:

Building codes sometimes offer builders an alternative. They can make a certain percentage of units accessible, or they can make more units adaptable. Variations in a city depend on local policies and the choices made by housing developers.

There is no national requirement for private, single-family homes to be made accessible. The building industry has resisted such provisions, fearing it will impose added costs on them, raise the selling price of the home—and slow down the permit-approval process, delaying the moment when they can sell the house and close their interest-accumulating temporary construction loan.

Current building methods do not lend themselves to easy accessibility. For example, the typical style of home building puts the main floor up at least several inches to prevent water from flowing in from the ground level, in theory at least. Some homes are raised to allow a “crawl space” for air to circulate under the home—again to remove moisture—or to make room for windows to allow light into a basement space.

When you consider accessibility codes in terms of how legislation would apply to private homes, the issue gets trickier. On one hand, some people hesitate to force accessibility on private homes:

On the other hand, millions of people with disabilities have to live someplace and, in the present environment, have very little to choose from. You could be forced to leave a neighborhood you prefer or to have to spend extra money for adaptations just because there are no requirements for basic features of access.

But why not require that all new private homes be required to meet minimum standards of accessibility, rather than just public or apartment buildings? We don’t accept that someone can just decide, “Oh, I don’t feel like having my new house meet all of those expensive, fire-safety and structural-integrity requirements.” The public interest is said to be best served by ensuring a minimum standard of safety for both the first residents and any future residents. Is it unreasonable to expect this of basic accessibility?

Finding existing homes that are either accessible (pretty difficult, in all honesty) or can be modified with the least expense is a challenge and typically takes more time than people in the market who don’t need accessibility features (for now, at least!). Rental agents and landlords generally have poor knowledge of what makes something accessible, though it is really a matter of what you specifically need.

That said, you could get lucky, as did this chair user with a stroke who lives in an area where basements are a common feature of freestanding homes:

Access questions extend beyond your own home. Your life takes you to the homes of relatives and friends. People throw parties. Someone you love might need help because they are not well. The “visitability” of other homes is a significant factor in the quality of your life:

As of 2006, 14 states and 32 municipalities (get the latest from The University of Buffalo Center on Universal Design, www.ap.buffalo.edu/idea/visitability) have established a visitability ordinance that requires a minimum of one accessible outside entrance, doors and hallways wide enough for wheelchair passage, and one usable bathroom on the ground floor.