The following excerpt is taken from Chapter
7 of Life on Wheels: For the Active Wheelchair User, by Gary Karp,
copyright 1999, published by O'Reilly & Associates, Inc.
To order, or get more information about Gary's book, call
(800) 998-9938. Permission is granted to print and
distribute this excerpt for noncommercial use as long
as the above source is included. The information in this
article is meant to educate and should not be used as an
alternative for professional medical care.
Save yourself later headaches or regrets by taking enough time in the
planning stage. You will avoid surprises, speed the construction process, have
a more satisfying working relationship with the contractor or worker, and save
Doing construction in the home is quite stressful. The stereotype--often
true--is that things take longer, cost more, and disrupt your life in ways you
never imagined. Many people find themselves in conflict with the contractor or
their spouse, arguing over scheduling, costs, or quality.
It is easy to underestimate what construction will cost, even if the task
seems simple. Contractor Louis Tenenbaum observes:
We volunteer with a program at the local Independent Living Center where we
help with consulting and evaluation. They had the impression that they could do
a lot for $2,000 per house. That's just not true. $2,000 doesn't go very
Working with the right professional is a way to get good advice on the
reality of the work--the costs and the actual tasks. Many builders are still
not experienced with accessible design, beyond simple tasks like adding grab
bars or using wider doors. However, there are contractors who make a specialty
of accessible construction. It is worth some effort to find the most
experienced people. You would be well advised to interview a number of
builders, find out about their experience, invite them to evaluate your home,
and ask for references.
Some architects have also emphasized access in their practice, either for
doing modifications, new buildings, or both. While 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. Architects will also have worked with
local contractors, so can advise you on who does quality, reliable work. Ron
It happens all the time that people build something ugly instead of something
that is well integrated and looks good. They make terrible, brutal home
modifications, sometimes at great expense, because they don't know what they
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. Louis
Occupational therapists tell me that I should learn about the various medical
conditions. I say, "Yeah, but you have to learn something about
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 Independent Living
Center, 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:
I find the most important thing is to avoid discussing solutions until we
identify problems. For instance, the problem is "How do I get into my
house?" not "How do I get in my front door or in my garage?" Or
even "How do I build a ramp?"
Maintaining the separation between private and public space is important to
your quality of life. The bedroom is a private space, while the entry foyer and
den are public. A bathroom is a private space, but even so there can be the
bathroom with your private toiletries and adaptive equipment, and the bathroom
that guests would use.
Some families whose homes have all 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
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.
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; 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 which 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
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 or
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 or doing container gardening are stamina activities. Locating a kitchen
or gardening task so that you can sit comfortably affects how long you can
If you are selecting a new wheelchair, you should know the narrowest door or
passageway that you will need to get through. A narrower chair doesn't
necessarily mean narrower seat. Frame design and wheel type 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
necessary, you can adjust your wheels to be absolutely vertical, making your
chair as narrow as possible. If you have adjustable axles, you might also gain
some clearance by bringing your wheels closer to your body. Obviously, your
stability in the chair is a high priority, but the fraction of an inch you
might gain could make the difference between getting someplace or not.
There are published standards which 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 codes does not mean there will necessarily
be obstacles for you. You might not need every recommended access measure, so
might as well save your money.
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 less if
you are using a high performance, lightweight, rigid frame manual chair where
your feet are under your knees. Front- and mid-wheel drive power chairs can
turn in smaller spaces than rear-wheel 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.
I once lived in an apartment with a small bathroom. I couldn't turn around, but
I could close the door once I was inside, and get to the toilet, the tub, and
the sink. Because I am flexible enough to reach behind to open and close the
door, and because I can wheel backward accurately, it was fine, although not
ideal. Everything else about the place was just right, so I decided to accept
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.
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:
While I was in the local Auxiliary Hospital, waiting for our home to be
constructed, we phoned a company to see what it would cost to have a door
opener installed. They wanted $2,000 plus traveling to come about 75 miles to
install one. My contractor said, "That's ridiculous." He bought a
garage door opener for $270, mounted it sideways above the patio doors with a
rod and a chain so it pulled the doors open or closed instead of pushing them.
Then he hooked the on/off switch to doorbell buttons inside and out, and I
could go in and out whenever I wanted. It worked like a charm, and altogether
it only cost $450.
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
It is usually cheaper in any situation to rig up something that was intended
for another purpose. But when you call a supplier you are pretty much asking
them about the installation of equipment specifically made for that purpose. A
supplier has their reputation and liability to think of. If they jerry-rigged
something and the door somehow closed on you or hurt you in some way--well,
they would be the ones in trouble. If a door opener made for that purpose
malfunctions, then you can go back to the manufacturer for satisfaction. If you
are using something made for another purpose, the manufacturer is going to say,
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:
One easy modification that comes to mind is a chain with a hook on a post at
the edge of a porch where I built a ramp. It connected to an eye that I
attached to the storm door. This allowed the gentlemen caregiver to hook the
door open when he was pushing his wife in her wheelchair, so that he did not
have to hold the door with his knee or something. Though it is a small thing,
it did make things easier for him. The low tech way--that's what I