It’s Not About Wheelchairs

June 1, 2003

It’s Not About Wheelchairs (.pdf available here)
By Marc Krizack, Whirlwind Executive Director

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

c) 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 airfilled 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.

About the Author: Marc Krizack has 29 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.