Life on Wheels (87 page)

Some architects have also emphasized access in their practice, for doing modifications, new buildings, or both. Although it might cost more to pay an architect’s fee, architects understand how to maintain the quality of your home’s appearance and overall function—and, in the process, preserve, or even enhance, your home’s value. Architects will also have worked with local contractors, so they can advise you on who does quality, reliable work. Ron Mace noted:

Adapting a home is a multi-disciplinary process involving many players. Therapists have a contribution to make, because they understand how the physiology of your disability affects your interactions with the home. Home modification is a subspecialty within the profession of occupational therapy.

The process also includes you. Observe the details of how you function in your present home. Note what is stressful, fatiguing, inconvenient, or awkward. Make notes to have with you when you start to discuss changes. No professional can automatically know about your specific needs and preferences. If you can clearly describe your needs from your everyday experience, you will get the most from their services.

Start by defining the problems. Take time to evaluate your home, consider how your disability needs to be accommodated, do research and reading, and invite in people with experience. Check with your local center for independent living, many of which offer evaluation services or even programs to help perform or finance changes. Tenenbaum finds that people often come to him with preconceived notions about what to do:

Maintaining the separation between private and public space is important to your quality of life. The bedroom is a private space, whereas the entry foyer and den are public. A bathroom is a private space, but one bathroom might be where you have your private toiletries and adaptive equipment and the other bathroom would be for guests and, therefore, a more public space.

Some families whose homes have all of the bedrooms upstairs find themselves changing a downstairs room into a bedroom for a person who can’t go up the stairs. Tri-level homes also pose problems of this sort. There may be only one level where you have access to a bathroom or the ability to freely come and go from the home.

Putting a bedroom on a lower level can violate the separation between public and private space. The normal flow of family life is disrupted by the loss of family space downstairs or by the movement of activities upstairs in which you can no longer join. Guests coming in may see a bed or medical equipment, perhaps in what used to be the living room. This kind of exposure can be uncomfortable for the whole family—especially the person with the disability.

If a formerly public space must be made private, try to relocate the public space somewhere that is still accessible. One family in a tri-level home made a bedroom of the ground-floor living room because it had the easiest access. The father—the chair user—opted to accept being assisted up a ramp around the side of the house to get to the new living room on the next level.

Too much privacy can mean isolation for the person with the disability. Even if the solution is to build a totally accessible addition to the house, keep in mind the need for everyone to share in the community of the family, and place the highest priority you can on maintaining independent accessibility.

Choose the best products you can, even if they are more expensive at first. Well-designed products will last longer, be easier to operate and simpler to maintain, and often be better looking. Well-designed products don’t tax your strength, their operation is self-evident, and they provide you with auditory and visual cues that they are operating correctly.

Consider all features when choosing products. A door handle might be easy to turn but have a key lock that demands fine dexterity or pinching strength. A flat stove surface might make it easy to slide pots onto and off the heating element; it should also indicate, by some color, that it is on to prevent accidental burns.

Keep both strength and stamina in mind as you consider adaptations you make in your home. Strength is how much force you can exert briefly. Stamina is your ability to continue performing an activity. For example, opening a door and making the bed by lifting the mattress are strength tasks. Making a door spring less tense or choosing a lighter mattress can preserve strength. Washing the dishes and doing container gardening are stamina activities. Locating a kitchen or gardening task so that you can sit comfortably affects how long you can work and how much strength and leverage you can apply, depending on your balance and physical capacity.

If you are selecting a new wheelchair, you should account for the narrowest door or passageway that you will need to get through. A narrower chair doesn’t necessarily mean narrower seat. Frame design and the type of wheels and hand rims also have an effect on overall width.

Your chair can be adjusted to optimize your access. The more camber you use—adding angle to the wheels to increase your base—the wider you are. If you have adjustable axles, you might also gain some clearance by bringing your wheels closer to your body. Obviously, your stability and comfort in the chair are the high priorities, but the fraction of an inch you might gain could make the difference between getting someplace independently or not.

There are published standards that detail exact dimensions—often expressed as a range—for wheelchair clearance and accommodation. In reality, the ideal measurements depend on your specific needs. Just because a home does not technically conform to accessibility guidelines does not mean there will necessarily be obstacles for you. You might not need every recommended access measure, so you might as well save your money. That said, keep the future in mind if you expect your disability to change in ways that limit you further.

For instance, a circular area five feet in diameter is typically recommended as the space necessary to fully turn around in your wheelchair. You might actually need more or less space. You might need more if you need to elevate your footrests and have a ventilator on a tray behind your chair, or you might need less if you are using a high-performance, lightweight, rigid frame manual chair in which your feet are under your knees. Front-and mid-wheel drive power chairs can turn in smaller spaces than can rearwheel drive chairs.

Consider whether you even need to turn around. Going backward out of a small room like the bathroom might not be a large problem. On the other hand, having to wheel backward often, over a greater distance, could lead to stress in your neck and shoulders from having to crane around to see where you are going:

By all means, acquire the published standards; they have much to offer. But consider them a guide, not law. Do your best to think in terms of principles—being able to move, reach what you need, be independent, and use your energy efficiently.

In fact, there are no legal requirements for accessibility measures in detached homes, and they are nominal for other forms of housing. Your legal concerns will have more to do with local building codes and permit approval.

To modify your home, you don’t always have to call a professional contractor, pay top dollar for new products out of catalogs, or even restrict yourself to products that are designed solely for access. Keep your thinking—and your eyes—open to solutions in unexpected places. You might have a friend who just loves tinkering and solving problems. Give him a call. Those skills can come in very handy.

Your building contractor can use the same creative approach, as did a builder in Canada for this person with a spinal cord injury:

Creative contracting solutions should be done with care. Automated equipment needs to be properly installed. Anyone adapting equipment needs to understand how it will withstand the stresses placed upon it and ensure that the structure holding it can support it. For example, a standard garage door opener is a fairly heavy item not designed to operate on its side. Improperly executed, a low-cost approach can lead to injury, as this woman with a mobility disability notes:

Many creative ideas don’t involve expensive or heavy equipment, only simple solutions. This contractor found a simple solution to the problem of keeping a door open while someone helped the chair rider up a ramp:

A number of building features impact the ease of access to your home. Doors, flooring, windows, electricity, and other features need to be considered for the ways in which they obstruct your independence or can be better designed.

Ideally you would prefer to go in the front door like everyone else. For some people, this ability to enter your home can affect your sense of being an equal in the household. Having more than one choice of entry is better yet. The primary entrance is ideally close to the car and allows you to bring things into and out of the home as easily as possible. In an apartment complex, this might mean convenient access to an elevator from a parking garage.

Your goal is to achieve a “zero-step” entrance. Homebuilders often hesitate to build zero-step entrances because a primary concern is protecting the house from water. They also fear that they might not pass a final construction inspection required for handing the house over to the buyer and collecting their money. But the details of building zero-step entrances have been well established and well proven in many homes. With a proper seal at the door threshold, and a minimal slope away from the doorway, water will not find its way into the home. A protected doorway also helps keep the rain away from the door altogether.

A paved, reasonably level, smooth surface is best for approaches to doors, patios, decks, gardens, and parking areas. Widths of five feet are considered ideal. Consider whether the entrance should be protected with an overhang if you live in a rainy locale. Chair riders often need a little extra time to get a door open, so they will be exposed to the weather. An overhang also suggests the need for additional lighting so that you can find your keys, see the pavement when approaching the door, and see the doorknob well enough to operate it. A small shelf next to the door is an idea that would give you a place to put down a bag of groceries while you are unlocking the door.

If you can afford more-extensive changes to a private home, you might regrade the driveway to bring it up to the level of the house. This way, you can take advantage of the car to get up the slope so you won’t have to push or drive your wheelchair uphill.

Construction details and planning information are available from a wide variety of sources, notably the University of North Carolina Center for Universal Design (www.design.ncsu.edu/cud) and the Center for Inclusive Design and Environmental Access of the School of Architecture and Planning University at Buffalo (www.ap.buffalo.edu/idea).

A ramp is a common and generally affordable solution. Some people might simply lay down a piece of wood so a chair rider can be hauled up it in his chair, but that might not achieve independent—or safe—access.