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06.01.03
It's
Not About Wheelchairs
By Marc Krizack
Building
an Inclusive Development Community: A Manual on Including People with
Disabilities in International Development Programs, Heinicke-Motsch, Karen
and Susan Sygall, editors, Mobility International, USA, 2003 Chapter 4.1.
8 pages
People wanting to provide wheelchairs to those in developing countries
who need them are most often guided by their hearts. The problem,
however, is vast and complex, and unfortunately, things are not always
as simple as they appear.
Many well-intentioned people donate old hospital style wheelchairs that
granny used before she died to one or another charitable organization
which more likely than not merely stuffs them into a container paid for
under U.S. Humanitarian Assistance. Many, many chairs still need
to be refurbished upon arrival, and will sit collecting dust and rust
in some warehouse or storage yard waiting in vain for a local volunteer
to clean them up and repair them. Those in good condition are not
accompanied by instructions or spare parts to keep them in working order,
so even if they start out being usable, they soon end up collecting dust
or rusting away like the others. Providing free wheelchairs is likely
to be a waste of money without there being a system or mechanism in place
(both in the U.S. and in the target country) to ensure that only good
quality wheelchairs will be sent and that they will be appropriate for
each person who will use them.
Providing wheelchairs is not about wheelchairs. It is aboutproviding
people with the one thing they need to move out into their owncommunities
– to go where the action is. It is about integrating people with
disabilities into their society.
As long as wheelchair donors focus on the wheelchair and not on the end
user, people with disabilities will remain dependent and unproductive,
a drain on society's resources. When the needs of the end user are
considered first, the most appropriate wheelchair (not merely the cheapest)
can be provided, and with other targeted assistance, the wheelchair rider
can go to school, get a job, and become a net contributor to society.
The underlying problem is that the usual market forces are not present
in any significant way when it comes to the purchase of wheelchairs in
developing countries. The end user most often cannot afford to pay
for his or her wheelchair. The market for wheelchairs is made primarily
by government agencies, development organizations, and charitable and
religious institutions. Historically, the end user has been a mere
object of charity, with unfortunate human and economic consequences.
People who could be active with the right wheelchair for their situation
receive an inappropriate chair that does not provide any significant improvement
in their mobility, independence, or integration into society. A
chair that is too wide, for example, is difficult to push and may be impossible
to get through doorways. Besides the human cost, it is a waste of
money.
The key player that is most often overlooked is the wheelchair rider him/herself.
Or, rather, it is the local and national self-help service and advocacy
organizations of people with disabilities. These organizations are
in a position to advocate on behalf of those who need wheelchairs before
the government agencies and charitable and development organizations which
purchase wheelchairs to ensure that the recipient of a chair receives
one that is appropriate for his or her situation (physical condition,
age and size, geographic setting, personal goals, etc.).
With organizational development assistance, such as training in grant
writing and management, the disability organizations can increase the
local market for wheelchairs, which not only benefits a greater number
of end users, but can also provide market stability for local wheelchair
manufacturers, who are also likely to be employers of people with disabilities.
It Works in Siberia. The scenario just described
has worked, and is currently working in Novosibirsk, Siberia. In
1993, with grants from U.S.AID, a disabled sports club transformed itself
into an Independent Living Center, a service and advocacy center run by
and for people with physical disabilities. At the same time, an
Aeroflot helicopter repair facility and a newly established local small
private company went into the wheelchair-building business. At the
time, the government was buying wheelchairs from Russia's only then-existing
wheelchair factory located near Moscow. In fact, there was no mechanism
for buying wheelchairs anywhere else.
The activists from the disabled sports club convinced local rehabilitation
administrators to make the case with Moscow to allow them to buy wheelchairs
made locally, and they were successful. The rider-activists also
convinced the local rehabilitation administrators to allow them to choose
whether they wanted a chair from the Aeroflot factory or from the private
company, whose wheelchairs were better built.
Today, the Novosibirsk Regional Center for Independent Living "FINIST"
(Phoenix) is a sales agent for the private wheelchair company (the Aeroflot
facility stopped building wheelchairs) and receives commissions.
When it writes grants for job training programs, for example, it makes
sure to include some amount for the purchase of appropriate wheelchairs
so that each of the program participants will have a suitable wheelchair.
FINIST also is involved in the annual Novosibirsk Regional budget process.
In these ways, FINIST helps maintain a market for locally built wheelchairs.
Getting bang for your buck. Assuming no increase
in available funding, spending money on the development of an organizational
infrastructure in the target country will mean less money now for wheelchairs.
In the long run, however, it will prove to be a more efficient use of
resources. Wheelchairs that are sent will be used, not left to collect
dust or rust. The average life of a wheelchair will be prolonged
through proper maintenance andrepair. Wheelchair recipients will
have increased mobility and independence with all the benefits that that
implies. A well-supported infrastructure can mean jobs and income
for those least likely to be employed. If all of this is integrated
into a comprehensive program of physical, social, and vocational rehabilitation,
it can become sustainable.
Pooling resources and efforts with other international aid organizations.
In almost every place where there is an international aid
organization, there are two or more such organizations. Often, there
are a half dozen or more. These organizations can share resources,
such as a warehouse and the costs of maintaining a repair shop.
Each can also provide a separate, non-duplicative function, with one providing
wheelchairs, others training physical therapists, others providing organizational
development assistance, etc. The ideal situation would be a sharing
of some resources on the one hand and the continuation of individual activities
on the other, even if these would be duplicative, in order to promote
a healthy “competition” and give wheelchair users a choice
of service providers.
Finding a Partner. The first step a donor organization
must take is to secure a capable and reliable counterpart in the target
country. That counterpart can either be a branch of the donating organization,
another international development agency, or it can be a purely local
organization. The ideal local organization is one that represents the
interests of people who use wheelchairs. Preferably, this is an organization
run by wheelchair users themselves because no one knows the problems wheelchair
riders face better than wheelchair riders themselves. Where
this is not possible, or in the case where the international development
agency chooses to partner with a non-disabled run organization, such as
is the case with many church-affiliated programs, wheelchair users and/or
local disability groups that represent wheelchair users should be actively
involved to ensure that the needs of the end-user will be met.
The local partner needs to have the capacity to gather and relay accurate
information to the US-based office. It needs to be able to handle
all customs paperwork, and have a place to store the wheelchairs until
they are distributed. It will need to be able to make final adjustments
to the wheelchairs before they are distributed so they will best fit the
recipient. Depending on the arrangement with the US-based
office, the local group may also need to have the capacity to refurbish
the donated chairs.
Assessing the Need. The second step in any wheelchair
donation program is an assessment of the actual need. It is not
enough to simply send down wheelchairs with the idea that any wheelchair
is better than no wheelchair. Important information to be gathered
in an assessment includes:
a) Identifying the individuals who need wheelchairs;
b) Evaluating each prospective recipient’s personal needs, including
age, size, physical condition, geographic setting (rural or urban), personal
goals, etc.). This is best accomplished through the services of
a qualified physical or occupational therapist who can accurately measure
and assess each prospective recipient and make appropriate recommendations
for the type of wheelchair the individual needs. Local non-professionals,
however, especially other people with disabilities, can be trained for
this purpose.
c) Determining how the wheelchair rider will get his/her wheelchair repaired.
Issues include 1) the availability of a person (usually a family member
or a wheelchair or bicycle mechanic, but it could be the wheelchair user
him or herself) who is able to maintain and repair the wheelchair; 2)
the availability of spare parts, especially those parts that wear out
most often, including tires, inner tubes, and bearings; and 3) the source
of adequate funds to repair the wheelchair. The life expectancy of the
wheelchair (usually between 2 and 5 years for active use) and the annual
cost of wheelchair repairs must also be estimated.
There are currently three organizations worldwide that specialize in appropriate
wheelchair design for developing countries. They are a) Whirlwind Wheelchair
International, based at San Francisco State University; b) Motivation,
based in Bristol, England; and Handicap International, based in Belgium.
Depending on the target country, the assessment phase should include consultations
with at least one of these organizations.
Setting up the program. The simplest situation is one
where new wheelchairs are sent to a city or region that has a parts distributor
who sells parts very cheaply. Of course, the simplest situation
is rarely ever the real one. This is because most donated wheelchairs
are likely to be used wheelchairs. These chairs need to be cleaned
and often adjusted or repaired. Because of the difficulty in acquiring
replacement parts in many places around the world, it is often best to
have the chairs cleaned and repaired before shipment. (On the other hand,
a big advantage to repairing the chairs once they reach the target site
is the creation of local job opportunities, and of course, it will be
more cost-effective to have the chair repaired in the target country where
labor is considerably cheaper.)
Standardization is a good idea. The wide variety
of wheelchairs, not only of different types but from different manufacturers,
makes the spare parts problem all the more difficult. Rather than
accept any wheelchair that is donated to it, the U.S. organization might
want to concentrate on only a few types of wheelchairs from only one or
two different manufacturers. This strategy has the advantage of
making it easier to acquire spare parts. Chairs that cannot be repaired
can be stripped of their parts, which can be sent along with the shipment
of complete wheelchairs. For the wheelchair users in the target
country, standardization means that a broken down old wheelchair will
still be useful as a source for spare parts. Funds raised to purchase
new spare parts can also take advantage of bulk pricing. Standardization
should not be confused with the one-size-fits-all model. Here we
are referring only to standardization of types and models of chairs.
Different sizes and customization remain indispensable options.
The Problem of electric wheelchairs. Extra careful
attention should be paid when considering the donation of an electric
wheelchair. All of the problems discussed above are multiplied many
times over with an electric wheelchair. Parts are expensive, almost
always unavailable, and special training is usually required to diagnose
and repair problems. Although an electric wheelchair
can increase a person’s range of mobility and allow for independent
travel, the lack of accessible architectural features such as curb ramps,
building ramps, and elevators, not to mention kneeling buses and the like,
can make it more difficult for the rider with a heavy electric wheelchair.
Seat Cushions are indispensable. One area that
is usually overlooked by wheelchair donors is the critical need for adequate
seat cushions. Far from providing new life to a previously immobile
person, a wheelchair without a proper cushion can mean death from pressure
sores. Pressure sores, also known as decubiti, are breakdowns of
the skin caused by continuous pressure of the underlying bones against
a hard surface. People with full feeling in their buttocks and legs frequently
and automatically adjust their sitting, lying and standing postures in
order to relieve the pain and discomfort that can be caused by these pressures
even after only a few minutes in one position. A person with a spinal
cord injury, however, does not feel pain from sitting in one position,
and general discomfort may arise only after a long time when the body's
internal mechanisms try to cope with an injury that has already occurred.
The best possible cushion, correct posture, and awareness of techniques
to frequently relieve pressure and adjust weight distribution are necessary
if the spinal cord injured person is to avoid pressure sores.
In a paper entitled “Coordinating Wheelchair Provision in Developing
Countries, presented at the RESNA 2000 conference (Rehabilitation Engineering
Society of North America – now known only by its acronym) Matt McCambridge,
MSE, discussed principles of “responsible wheelchair provision.”
“The rider must receive training in pressure ulcer management and
the use and care of a wheelchair," writes McCambridge. "Provisions
must be made to ensure that the chair can be repaired, and follow up assessment
should be done to determine whether the equipment meets the person's needs."
Three basic choices are available when providing a cushion. One
is to provide a standard foam or air-filled cushion with each donated
chair. Another is to send a cushion that has been custom made for
the recipient. The third is to have cushions made in the target
country using available low-cost materials. This last alternative
has been the subject of an annual international competition sponsored
by RESNA beginning in 1996. “Over the years, many innovative
and successful designs have been entered into the competition. The winning
designs for each year of the competition from 1996 to 1999 were:
(a) Bicycle inner tubes tied into individual semi-inflated segments, arranged
in rectangular pattern 3 layers deep; (b) Foam rubber sheet over
contoured coconut coir (scooped out under ischials and tailbone), rubberized
cloth; (c) Buckwheat hulls in a bag sewn from a T-shirt; and (d)
Foam block scored in checkerboard pattern to minimize shear, cavity under
tailbone filled with coconut fibers, linen cover with zipper.”
(From RESNA 2000 Proceedings – For more information contact Beneficial
Designs, Inc. Website: http://www.beneficialdesigns.com
THE UNSEEN DANGERS OF DONATED WHEELCHAIRS
Unfair Competition. If one of the goals of international
aid organizations is to develop sustainable programs, that is, to help
people to help themselves, then free imports of used wheelchairs from
the U.S. defeats that purpose in an important way: it undermines the development
of local wheelchair manufacture. If any foreign company, in any
other industry, sold its products below cost in another country, it would
be accused of unfair competition and dumping, in violation of international
trade agreements. Yet we applaud the free distribution of wheelchairs
that cost a lot to refurbish, ship, and distribute, even if these costs
are hidden because they are paid for through donations, volunteer labor,
and 100% subsidized shipping.
To avoid competition with an existing wheelchair manufacturer, it is not
enough that a person who gets a free wheelchair lives far from the factory,
or that his or her family could not afford to buy a wheelchair anyway.
In a free market, wheelchairs, like all goods, will insinuate themselves
into the marketplace. There are many, many examples of wheelchair
users with perfectly good chairs who have learned that a quick buck is
to be made by crawling in to the local church wheelchair giveaway site,
or showing up in a decrepit old wheelchair, in order to receive a free
chair, which he later sells to a trader at the flea market. And
a family that lives hand to mouth will sell its donated wheelchair, trading
any advantages the wheelchair might give, so it can survive for the next
few months. Is this any wonder when you consider that in India there are
beggar families that maim and disfigure their children in order to make
them more successful at begging?
Of course, for every wheelchair sold, there must be a buyer. But
since the buyers of wheelchairs are principally government agencies and
charitable and development organizations, there is pressure on these organizations
to buy cheaper chairs on the open market, rather than from the local manufacturer.
In at least one case, a wheelchair manufacturer himself bought the imported,
donated wheelchairs at the flea market and included them in a batch of
wheelchairs purchased by the international funding source. The manufacturer
may not have lost money, but his employees, some of whom were wheelchair
riders themselves, lost an opportunity to earn their wages.
The right tool for the right job. There are many
wrong, even if well-intentioned, reasons to be involved in providing wheelchairs
to people with disabilities in developing countries. There is only
one right reason: To provide the wheelchair user with real mobility
that will improve his or her opportunities to be an active, integrated
member of the local community and of society in general, by being able
to leave the confines of home or hospital in order to go to school, get
a job, shop for food, and engage in all those other activities independently
mobile people do every day. The wrong wheelchair won’t help
its rider do any of that.
Note: Special Thanks to Alicia Contreras, Director, Whirlwind Women,
for the ideas she contributed to this paper.
About the Author: Marc Krizack has 20 years of experience working
on disability issues in developing countries, Eastern Europe and Russia.
He currently is managing a project for Whirlwind Wheelchair International
that is developing the wheelchair industry in Nicaragua. Since 1993
he has focused much of his efforts on developing programs that mainstream
people with disabilities in Novosibirsk, Russia.
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