Life on Wheels (96 page)

The ideal bedroom is spacious enough to allow full turning radius, particularly next to the bed, where people often are forced to back out of a space close to a wall. Non-fitted bed linens and spreads can narrow the space even more and get tangled up in the wheels. Backing up is easy for many wheelers but awkward for others, in which case the wall or bedclothes can suffer from contact with the chair. Narrow spaces next to the bed can also make it very difficult to get to a telephone, typically kept on the bedside table.

The bedroom is a place where additional electrical power might be needed for adjustable beds, home control systems, medical equipment such as ventilators or oxygen machines, television, stereo, or computer systems. The trick in planning is to be able to reach all of these things. Once in bed, for instance, how do you turn off the lights? A bedside lamp with a chain switch (which might need to have a loop added to it for those who can’t grip) could be the answer, though the lamp should have a heavy base so that it won’t easily tip over. A more advanced solution is to put switches in the wall directly next to the bed.

Beside the bed, you might need room to have a lamp, a book to read before you go to sleep, medications, or remotecontrol units, especially if you use an environmental control system. It could be difficult to twist far enough around to reach a bedside table that is placed back against the same wall as the headboard. A bedside stand with wheels can be rolled forward after you are in bed.

Bedroom dressers and tables often have drawers that do not slide easily or use handles that require strength and agility in the fingertips. Better designs use ball-bearing tracks so that the drawer slides with little force and handles that are large enough to grip with all of your fingers. Even then, adding loops can help make drawers more accessible, such as for this woman with rheumatoid arthritis who also has a vision impairment:

The ultimate bedroom is a master suite with an accessible bathroom and roll-in closet. These spaces could use pocket doors, which are easy to open and close and don’t invade any space by swinging out.

A close relationship between bedroom and bathroom is highly desirable. Getting dressed is more effort for most chair users. A private route to and from the bathroom spares you the need to dress until you are fully prepared for the day. If you receive assistance, you are best served when the helper has easy access to the bathroom. A lift can be installed on a ceiling rail that travels from the bed directly into the bathroom, allowing you to go from your bed directly into the tub or shower.

The more time you spend in the bedroom, the more important it is to have an escape route. There might be a door to a deck or patio, but, at the least, there should be a window that is large enough to get out.

It might not be possible to have access to an upstairs bedroom. Depending on your resources, you could consider installing a stair lift, converting a space downstairs, or adding a new bedroom. If you add a bedroom, ensure full access to the rest of the house. Louis Tenenbaum describes seeing a plan for a bedroom addition:

There is now quite an industry in closet organization, with shops, catalogs, and consultants presenting products for optimal efficiency. The typical closet has a horizontal rod for hanging clothes, with a shelf above it. Both can be out of reach for a wheelchair user. Hanging rods must be lowered or a height-adjustable product must be installed. Sometimes this allows installation of another rod higher up that can be used by a standing person.

Apart from moving rods, you can gain storage space with an array of accessories. Stacking storage boxes, drawers, and shoe bins can make the most of existing closet space, while bringing more items within reach. Placing folded clothing in drawers or shelves can be easier on the arms, sparing you the need to extend your arm forward to lift clothing on hangers off of the rod.

Every home has a space for tools, wet boots, and brooms and where laundry gets done. In an apartment, these things get squeezed into a closet. If you have a utility room, consider the height of shelving, ability to access closets, and the type of washer and dryer. A small, stacking washer and dryer unit can be very hard for a wheelchair user to reach. Front-loading types are easiest to reach.

Access to the outdoors and any yard is an important consideration. Ramped sidewalks or ramps from rear patios and decks expand access to the outside for family barbecues, working in the garden, or just sitting in the sun. A sun porch added to the rear of the house or a screened-in balcony in an apartment offers greater opportunity for fresh air, protects from bugs and direct sunlight, and removes the need for a screened door at the entry, which complicates access.

Some surfaces are easier to wheel on than others. Thick grass, especially on damp ground, is difficult for wheeling, and grass can hide invisible depressions a wheel could sink into, tipping you over. If you intend to wheel on a lawn, keep the grass cut, and inspect the yard for depressions to be filled in. On unpaved surfaces, gravel and stones make an unfriendly surface, whereas crushed limestone or packed clay makes it more passable.

If you will be encountering substantial rough terrain, wider, knobby tires can help or you could use an all-terrain vehicle instead of a wheelchair. Clearance of footrests can make access difficult if footrests are too low, since there is a greater chance of the main wheels settling a bit in soft ground.

You need to take responsibility for determining whether a home or apartment can work for you. Telling landlords or real estate agents that you require wheelchair access will usually not do the job. They could either exaggerate or minimize your needs. They don’t know how you adapt or what is hard or easy for you to do. They may think that you must have a home formally designed for wheelchair access, according to general standards and codes.

You will have better luck getting what you need with newer construction. Depending on the state you live in and whether the developer gained any exceptions to accessibility codes, a certain portion of new apartment units or townhouses in a newly constructed complex are generally required to be accessible. This might mean “handicapped adaptable,” an approach in which the unit is designed to be adapted in certain ways if it needs to accommodate a wheelchair user. For instance, the management would be prepared to install lever handles on the doors and plumbing, add grab bars, or switch the stove and oven unit for one with controls on the front.

Thanks to the recent history of access codes and the ADA, the building environment is much improved. Builders tend to be more aware of the standards and of product offerings that satisfy legal requirements. But there is a difference between the codes and what really works best. If you have the chance to influence the design of a home or apartment complex before construction, you might be able to offer some guidance to a builder who is interested:

This is unfortunately more the exception than the rule, particularly if you are buying, because of business and permit approvals. A builder might not be allowed to accept money for a housing unit until it is finished. Since you can’t commit to the purchase in advance, builders can’t risk making special accommodations, since they can’t be certain you will actually buy it.

Developers are just beginning to witness direct demand for Universal Design in their new apartments and homes. Ron Mace described how some consumers are planning ahead:

Some people have found a workable solution for accessibility in mobile and modular homes, which are usually limited to one floor. A mobile home is attached to a steel frame, which provides structural stability. It can be placed only in a mobile home park or other site zoned for mobile homes. A modular home is more akin to conventionally built homes. However, it is largely constructed indoors in a factory, transported to the site, and then placed onto an already constructed foundation—which is where the worst complications can occur if the foundation is not carefully laid. Modular homes can be located in most residential areas, depending on local zoning ordinances and building codes.

Mobile and modular homes are built with the outer shell providing the structure. Interior walls are generally not load bearing. Because of the construction of these homes, there is usually more flexibility in modifying interior design. Modifying an existing unit can also be much easier, since interior walls are less likely to be structural. Doors can be widened and walls moved without worrying about the ceiling falling in. A ramp added to a mobile home will usually need to be structurally freestanding, since the building is not designed to carry the additional load.

You might need to train family members and friends about keeping a clear path for you around the house. People who walk tend to leave shoes, bags, or packages recently brought into the house in your path of circulation without realizing they are obstructing your way. You also need to train others to return chairs fully back under the table and out of your way. You often need to remind people a few times before it really sinks in. Most people will understand and adjust. Often, other people tend to think that because, as a chair user, you spend all day in a chair, you must be accustomed to it:

If you’re not getting to move out of your chair enough, feel free to speak up and let others know your needs, saying something like, “I’d really like to get out of this chair and be more comfortable.”

What else is involved in making a home usable aside from building ramps, enlarging doors, or buying the right stove? Louis Tenenbaum suggests:

An accessible home makes for a much greater quality of life, yet true independent living needs the community surrounding that home to be accessible, too. What good is it to be able to come and go freely from a household where you are a true participant if you can’t get around on the streets where you live, go to school, go to work, or go have fun?

The ramped curbs at intersections that are now so common did not exist until the 1960s, when the Independent Living Movement began in Berkeley, California—the location of the very first curb cuts. Ed Roberts, who was quadriplegic as the result of polio, fought his way to acceptance into the University of California and, along with other devoted advocacy pioneers, achieved the first curb cuts, sought accessible housing, provided needed services on campus for students, and established the first independent living center in Berkeley to provide these services. This began a movement resulting in independent living centers across the country, thanks to the availability of federal funds through the Rehabilitation Act of 1978. Your local independent living center may have specialists who can help you solve accessibility issues in your home and, possibly, even help find funding to pay for them.

Ed Roberts, by the way, eventually served as the Director of the California Department of Vocational Rehabilitation—which had attempted to deny him tuition funding to attend the University of California, Berkeley. Thanks to the successes of people like Roberts, your home is not just where you live, but is a base from which you can live a full life in your community and beyond as you explore the very wide range of possibilities for getting out there!

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. Newtown, CT: Taunton Press; 1994.