Where There Are No Wheelchairs: an overview of non-governmental approaches to wheelchairs in developing countries

This article offers a brief overview of some of the major non-governmental organizations involved in the provisioning of wheelchairs for people with disabilities in developing countries. A future article in Disability World will survey current wheelchair solutions available in selected developing countries from a more user-centered perspective.

There are many people, organizations, and governments whose work involves wheelchairs in an international scope; the ones described below are a partial list at best, limited to several prominent NGOs whose work reflects the diversity of philosophies and products in the area.

The Free Wheelchair Mission

The Free Wheelchair Mission is perhaps best known for their unique wheelchair design which incorporates a plastic patio chair as the seat and seatback of the wheelchair. Inspired by a Christian philosophy of giving, their primary goal is to "provide the transforming gift of mobility to the physically disabled poor in developing countries." (www.freewheelchairmission.org) While the Mission does not evangelize directly, according to their 2004 public relations video, "because these chairs are freely given, the Free Wheelchair Mission and its partners [mostly non-denominational churches and missions] are being welcomed into countries around the world previously closed and unfriendly to outsiders." (www.freewheelchairmission.org/videos/2004Mpeg.mpg)

The Mission's founder, Don Schoendorfer, watched a disabled woman in Morocco crawl across a dirt road 25 years ago and has been haunted by the image of immobility ever since. He was inspired to found the Mission in 1999 and has since shipped 23,000 free wheelchairs to 33 different countries, including recent deliveries to China, Ghana, India, Iraq, Mexico, Panama, Peru, Uganda, and Zambia. The Mission's funding is fairly grassroots; most of their work is funded through individual donations and small fundraisers, while foundations and corporate employee matching programs account for the rest. They are also implementing a new direct mail fundraising effort this winter.

Free Wheelchair Mission estimates that there are 100-150 million people in the world who need a wheelchair. Accordingly, their approach is straightforward: to design the least expensive wheelchair possible and distribute as many as possible. The basic design concept is to assemble a chair on wheels from components already being manufactured in high volume at low cost.

The Free Wheelchair Mission's chair (photo courtesy Free Wheelchair Mission)

As a starting point, Schoendorfer selected a molded plastic patio chair because it's waterproof, durable, and inexpensive. The first model used a standard chair from Home Depot, but the Mission now purchases custom chairs manufactured with a UV inhibitor in softer PVC plastic to increase the chair's lifespan. He then wrapped the chair in a steel frame and added bicycle wheels, mountain bike tires, and 8-inch castors. They also add a footrest, side panels, brakes, and a seat cushion to finish the chair. Schoendorfer is currently developing a lap table to fit across the arms of the chair for working and reading. The Mission's average cost to manufacture, ship, and distribute a wheelchair in 2003 was just over $41.

The chair is one-size-fits-all, so they use fit children by stacking 2 or 3 seating cushions and using a seating harness, which is also used for adults with special seating needs. They estimate durability at 5-10 years, but thus far only have anecdotal data that some of the original wheelchairs donated in 2000 are still being used, according to Brett Trowbridge, Marketing and Strategic Advisor for the Mission. They also get anecdotal feedback through an orthopedic surgeon on the Board of Directors who accompanies some of the deliveries. While Trowbridge admits the chair is not perfect, they believe it is better than nothing--which is what most of the recipients had before receiving the wheelchair.

The Mission ships the chairs in modular form, 550 per container load, with assembly kits and instructions illustrated with photographs to avoid language barriers. Partner organizations such as local Rotary Foundation clubs, World Vision International, or other Christian relief organizations and churches receive, assemble, and distribute the chairs. Partners with the appropriate resources, such as World Vision, provide rehabilitation services such as physical therapy and training on how to use the chair, though most do not.

Wheelchair distribution in Najaf, Iraq (photo courtesy Free Wheelchair Mission)

The Free Wheelchair Mission is currently gearing up for their Christmas campaign with the goal of reaching 25,000 chairs shipped by the end of this year. You can learn more about the Mission at www.freewheelchairmission.org.

Hope Haven's International Ministries and Wheels for Humanity

It's easy to discuss these two organizations in conjunction with each other--not only because they share much of the same philosophy and practices, but also because they are run by two brothers: Mark Richard at Hope Haven and David Richard at Wheels for Humanity. Both organizations are notable for their efforts to responsibly and appropriately recycle used wheelchairs from the United States to developing countries.

Mark Richard was already familiar with wheelchairs from working as a personal assistant to a friend who used a chair, but became an activist while doing volunteer work in Central America about twenty-five years ago. In the late-1980s, he was working with a Safe Haven for Boys project in Guatemala. While driving home from Guatemala City one rainy night, he saw one of his neighbors--a woman with a disability--crawling across the road in his headlights. He later met her and offered to get her a wheelchair. When he and his wife returned to the U.S., Mark contacted his friend and wrote an article asking for donations for the newsletter of a spinal cord injury association in Wisconsin. He received twenty chairs, refurbished them, and drove them down to Guatemala to deliver to his former neighbor and others.

In 1993, Mark became Program Director for Wheels for the World, where he developed their system of collecting, refurbishing, and working with local rehab clinics or disability organizations to deliver wheelchairs to developing countries. Sponsors who donated wheelchairs were given information and a photo of the new owner of the chair, a practice later adopted by other organizations in the field. By 1996, he was working full-time with Hope Haven's International Ministries in Iowa. (Hope Haven was founded 40 years ago as a local, day alternative to boarding institutions for Deaf children and now offers services to children and adults with disabilities.)

David Richard had heard his brother describe his work for some time and, after accompanying him on a trip to Central America to deliver chairs, founded his own organization, Wheels for Humanity, in southern California in 1996. Wheels for Humanity relies on funding from foundations, fundraisers, and individual and community donations.

Both organizations accept donated wheelchairs, and completely clean and refurbish them using volunteer labor and donated components from companies. Wheels for Humanity expects to collect 5,000 chairs during 2004 while Hope Haven expects to receive approximately 8,000, which means quite a lot of volunteers. Wheels for Humanity relied on over community members to donate 10,000 hours to cleaning and rebuilding chairs last year. In addition to the retirees and students who volunteer about half the needed work, Hope Haven also works with the South Dakota Department of Corrections, which has created wheelchair refurbishing workshops at three of its prisons. Inmates can volunteer to refurbish chairs in exchange for learning new skills, participating in a socially productive activity, and token payment.

Wheelchair users (or potential users, as the case may be) in developing countries are more likely to have polio or cerebral palsy than spinal cord injuries, which have a low survival rate without the appropriate medical resources. One-size-fits-all chairs are often not appropriate for these users. Accordingly, both organizations do a lot of custom fitting and seating, and recycle a lot of high quality reclining and tilt-in-space chairs. Mark Richard remarked that the quality of the recycled chairs has improved over the years, and Hope Haven now recycles a lot of high-end models such as Quickie IRIS and TS (both of which have a base price of approximately $3,000). Richard feels that other organizations, such as Whirlwind, work with active-user chairs, so he tries to focus on users' more specialized needs.

Hope Haven staff fitting a chair (photo courtesy Hope Haven International Ministries)

Although both organizations accept any donations, they try to place the recycled chairs in an appropriate context, such as delivering hospital-style chairs for indoor use in institutions rather than everyday outdoor use. In addition to wheelchairs, they also recycle other assistive technology and a variety of physical therapy equipment. According to David Richard, wheelchairs make up only 40% of the equipment recycled by Wheels for Humanity. A typical shipping container load contains about 150 chairs ready for delivery, plus 50-100 pairs each of crutches and walkers, and 10-15 transfer boards and other pieces of physical therapy equipment.

Both organizations also work a lot with children. David and Mark estimate that over a third of Wheels for Humanity's recipients and about half of Hope Haven's recipients, respectively, are children. The latter has found that they don't have enough children's chairs to meet the demand of their partners, so Hope Haven has started working with ROC Wheels (www.rocwheels.org) to produce appropriate chairs for children with cerebral palsy. ROC Wheels is currently manufacturing two children's models and will also soon start making an active-user rigid frame chair for adults (all in various sizes). They currently make the chairs in Iowa, but plan to start shipping parts and materials to developing countries to manufacture them there.

Custom fitting and seating services require a lot of preparation and information about chair users' individual needs. Both Wheels for Humanity and Hope Haven work with rehab clinics to identify recipients, and then work with a clinic team of physical and occupational therapists and certified rehabilitation technology specialists to do the custom fittings. Wheels for Humanity prefers to work at clinics with orthotics and prosthetics services because they can train the P&O technicians in wheelchair repair and ensure long-term availability of repair services.

Wheels for Humanity occupational therapist and rehabilitation technician fitting a chair (photo courtesy Wheels for Humanity)

They recently collaborated, for example, with the Vietnam Veterans of America Foundation, who run an orthotics workshop in a hospital and rehab center in Nam Dinh, Vietnam. The director of orthotics for VVAF met with the rehab center director, who identified recipients for wheelchairs. Staff then took photographs and collected information on impairment, seating needs, function level, and measurements. They sent the information to Wheels for Humanity, who then selected appropriate chairs and assembled a clinic team to travel to Vietnam. The team worked with a local physical therapist to custom fit and seat the users, train them and their caregivers (usually parents) on wheelchair mechanics, seating, how to avoid pressure sores, and other important topics.

Hope Haven uses a very similar distribution process, and Mark Richard added that he tries to contact both local wheelchair manufacturers and disabled people's organizations for collaboration. The latter train new chair users, and he encourages local producers to fill the repair niche for donated chairs as a way to build a customer base, such as a shop in Antigua that both builds Whirlwind wheelchairs and refurbishes chairs for Hope Haven. Hope Haven is also an active organizer of the Association of Mobility Providers (www.rocwheels.org/Mobility_Providers/), or AMP, a network of professionals working in the rehab technology field. The AMP is currently working to develop distribution standards to ensure appropriate wheelchair provision in developing countries.

You can learn more about Hope Haven International Ministries at www.hopehaven.org/InternationalMinistries/ and Wheels for Humanity at www.wheelsforhumanity.org.

Motivation

Based in Bristol, England, Motivation is known for their work with appropriate technology wheelchairs, but they see that as only the beginning. Motivation aims "to enhance the quality of life of people with mobility disabilities" and they view their work with wheelchairs and other mobility devices as only part of this broader goal (www.motivation.org.uk/).

Their approach is holistic and encompasses five areas: poverty, rights, capacity, and services as well as products. According to Executive Director and co-founder Richard Frost, when the three original founders of Motivation began working in Bangladesh, they found that many potential wheelchair users were dying because of complications from pressure sores and other health issues. Helping people to get and stay healthy was necessary before they could even consider equipping them with chairs. Then, once people were healthy and had wheelchairs and training on how to use them, there were limited opportunities available to them to participate in their communities. The problem was obviously much bigger than simply the need for wheelchairs and lead to Motivation's broader approach.

According to their web site, "Motivation began in 1989 when David Constantine, a wheelchair user, and Simon Gue, both Industrial Design students at the Royal College of Art, London, won the Frye Memorial Prize for their design of a wheelchair for the developing world. Designed to be made from locally available materials, the design was simple, easily adaptable and ideally suited to the often rough environment of many developing countries." (www.motivation.org.uk/_history/) Constantine, Gue, and Richard Frost brought the wheelchair design to the Centre for the Rehabilitation of the Paralysed in Bangladesh. After graduating from school in 1991, they returned to establish a wheelchair workshop and have been working since then.

Motivation works only by invitation from local disabled people's organizations or rehab centers. The invitations usually come in the form of requests to provide wheelchairs or build a workshop, so they work with the local partner to study user needs and local capacities, and develop appropriate solutions. In Nicaragua, for example, they work with local partners to provide vocational training and find employment opportunities to address poverty among people with disabilities. They conduct peer-to-peer trainings with disabled people's organizations and lobby governments to address rights issues. Motivation is also interested in collaboratively developing a set of international standards for wheelchairs and has successfully worked with the government of Sri Lanka to implement standards for government wheelchair purchasing.

They work with local partners to set up wheelchair workshops and train "Wheelchair Technologists" to develop services and capacity. For example, Motivation has worked with the Tanzanian Training Centre for Orthopaedic Technologists (TATCOT) to run a Wheelchair Technologist Training Course. The organization is also interested in developing a certification process similar to that used by International Society of Prosthetics and Orthotics (ISPO) to certify P&O technicians as part of an effort to help wheelchair technologists achieve credibility and recognition as professionals.

Motivation does all their wheelchair design in the partner's country and does extensive field trials for new chairs. As they have worked with local partners over the years to design wheelchairs for projects, they've developed several models to meet specific needs. Motivation now has a family of wheelchairs that are adapted to local use for each project. Their first model was developed for use in Bangladesh to improve upon the Everest & Jennings inspired hospital-style wheelchairs used in the spinal cord injury unit at the Centre for the Rehabilitation of the Paralysed. This first four-wheel model offered better mobility and lighter weight--more suitable for active use--as well as more adjustable and less expensive. When they began working in Romania, they found the wheelchair developed in Bangladesh was not appropriate so they redesigned it.

When they began working in Cambodia, steel tubing was not available so they used wood. They also developed a three-wheel chair, with a longer wheelbase for added stability in rural areas. People already used three-wheel chairs and preferred them in testing. They have also redesigned the three-wheel chair with steel tubing in subsequent projects, and it is widely built in Southeast Asia and Africa.

They have also developed a dedicated tricycle wheelchair as well as tricycle drive conversion attachments for four-wheel chairs. Tricycles are frequently more appropriate in rural areas because they cover long distances more easily than standard wheelchairs, so Motivation designed an attachment to convert chairs, making them suitable for mixed distance and urban use. They've designed the dedicated hand-powered tricycle in the past two years and are also testing power assistance systems in Sri Lanka. So far, users have found the battery-powered model easier to refuel (because of relatively easy access to electrical sockets) but prefer the performance of the petrol-powered version.

Motivation, like other organizations working with wheelchairs in developing countries, is attempting to grapple with the scale of need. According to Frost, they considered the scale of their and their partners' work and felt they had not yet scratched the surface. The problem was how to build wheelchairs on a larger scale, with higher quality but lower cost. Additionally, many of their partners are more interested in providing services than manufacturing products, and reducing the labor required to build wheelchairs would free them up to focus on those services. Their response is the Worldmade project: a centrally produced, appropriately designed three-wheel wheelchair. Motivation will have the Worldmade chairs manufactured in China and shipped to several pilot countries to be assembled and distributed. The goal is to produce 3,500 Worldmade chairs next year and scale up to 10,000 chairs annually.

You can learn more about Motivation at www.motivation.org.uk.

Whirlwind Wheelchair International

(Full disclosure: the author was an intern with WWI during 2003-4.)

Whirlwind is unique in this field in that they neither make nor give away wheelchairs--they design them and create local capacity to build them. The organization is not a provider of wheelchairs but rather a hub or re-distribution center for knowledge of appropriate technology wheelchair design, engineering, and small-scale manufacturing. At the same time, Whirlwind's wheelchair design embodies a philosophy--grounded in the consumer and disability advocacy movements--which is simultaneously all about the chair and all about the person using it.

Their approach is described by Director of Operations Marc Krizack in an article titled, "It's Not About Wheelchairs": "Providing wheelchairs is not about wheelchairs. It is about integrating people with disabilities into their society.... 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." (www.whirlwindwheelchair.org/articles/current/article_c02.htm)

Accordingly, Whirlwind is as much a philosophy of wheelchairs as it is a type of design or an organization. Although they are grounded in the San Francisco Bay Area's disability community, both Chief Engineer Ralf Hotchkiss and Krizack speak as much from a general perspective of consumer advocacy as a more specific position of disability advocacy. Whirlwind was one of the earliest, if not the first, proponent of appropriate design for wheeled mobility: wheelchairs should be designed for the user's lifestyle and activities, and for her local environment, whether that be outdoor terrain or indoor architectural features.

Borrowing a term from software development, Whirlwind also approaches wheelchair engineering as an "open source" design project, which loosely means that a product is collaboratively designed and can be freely modified by anyone for non-proprietary use. Another critical element of their approach is involvement of wheelchair users in the design process. As a wheelchair user himself, Hotchkiss believes that most ideas that have led to important advances in wheelchair design have come from wheelchair users, such as Herbert Everest with the original folding Everest & Jennings chair of the 1930s and '40s, and Marilyn Hamilton with the first high-performance Quickie chairs of the 1980s. Another aspect of their philosophy is local production, largely for reasons of consumer empowerment and to support sustainable infrastructure for wheeled mobility.

For much of its existence, Whirlwind has been synonymous with Ralf Hotchkiss, who became a paraplegic in 1966 and began working with wheelchairs almost immediately when his first chair broke a half a block from the hospital. He quickly fixed the chair and started working on and designing others. As he spent much of the 1970s working for Ralph Nader on product safety issues and gaining an awareness of consumer advocacy issues, two events radicalized him as a wheelchair user and engineer. One was the break up of the Everest & Jennings monopoly on wheelchairs, through an antitrust suit in the late-1970s. The other was developing an improvement to hospital-style chairs to narrow them, allowing easier access to restrooms, for example, and being rebuffed by both Everest and Jennings and Invacare because the improvements would be too costly to them.

Hotchkiss was already actively working in independent living projects in Central America when he began working on wheelchairs in Nicaragua in 1980. The aim of the original design was to be comparable to the new lightweight active use chairs from Quickie, but more locally appropriate and sustainable in developing countries. This first chair was ten pounds (~4.5 kg) lighter than standard Everest & Jennings chairs and had folding footrests, parking brakes, and more convenient armrests. In 1990, they adapted the chair to deal with architectural barriers in Russia where doorways and elevators are uniformly too narrow to fit wheelchairs through. This second Whirlwind has a horizontal handle underneath the seat that allows the user to fold the seat and narrow the chair while remaining seated. Their third chair, the Africa I, was developed to be more easily made and repaired in Africa where materials such as bearings were either prohibitively expensive or unavailable. It was designed to be more self-aligning so it would still open and close easily when made without jigs and fixtures and used needle bearings instead of ball bearings.

The Liviano wheelchair (photo courtesy Whirlwind Wheelchair International)

Whirlwind's current chair, the Liviano, represents a shift in the organization's approach to manufacturing and services. The design has a longer wheelbase and is more adjustable than previous versions. It also requires higher precision fabrication and will be made using sets of jigs and fixtures. The Liviano is part of the Whirlwind Industrialization Project (WIP), a strategy to simultaneously increase the scale of production while improving the consistency and quality of the chairs and expanding beyond design to package the wheelchairs with services.

Whirlwind's approach as been to work on a very small scale, aiming to serve the lowest common denominator of manufacturing. Shop Manager Chris Howard jokingly described the typical Whirlwind workshop as "three guys in a shack in back of a house." Although aspects of Whirlwind designs are widely used around the world--around 45 countries--they estimate that their network of workshops has produced roughly 50,000 wheelchairs to date and Whirlwind wheelchairs are now being produced in about nearly two dozen countries.

(This is not to say that everyone in the Whirlwind network are "guys." A sister organization, Women Pushing Forward (formerly known as Whirlwind Women), has worked since 1994 to mentor and train women with disabilities in wheelchair building, independent living, and empowerment. Women Pushing Forward became an independent organization earlier in 2004 but continues to work with Whirlwind and currently works in Mexico, Uganda, Thailand, and Colombia. You can find more information about them on their web site at www.womenpushingforward.org.)

Like Motivation, Whirlwind has been looking for a way to increase scale while still retaining their belief in local production. WIP aims to industrialize small- and medium-size wheelchair production by designing, producing, and supplying jigs and fixtures to local workshops and factories. They are also beginning a project in Colombia, which will incorporate educational and employment training, peer training and advocacy, and rehabilitation services along with wheelchair production.

More information about Whirlwind Wheelchair International is available on their web site at www.whirlwindwheelchair.org.

The Wheelchair Foundation

The Wheelchair Foundation has established a name for themselves as the largest volume supplier of wheelchairs to developing countries. Since their founding in 2000, they have given away over 300,000 chairs, more than all the other organizations described in this article combined. Their goal is straightforward, if ambitious: to provide 1 million wheelchairs to people who cannot afford one by 2007, while raising awareness about the need for wheelchairs in developing countries.

The Foundation's approach is based on volume. They estimate that approximately 100-130 million people in the world need wheelchairs (believing that the WHO and UN estimate of 20 million people only accounts for 20-5% of the actual need), so they aim to provide basic mobility to as many people as possible as efficiently as possible. They do this by purchasing huge numbers of wheelchairs, which minimizes cost by economy of scale, and working with non-government organizations that distribute the chairs.

Kenneth Behring, a successful businessman and real estate developer, started the Foundation in 2000. Behring was already well established as a philanthropist in educational and other fields when he first donated wheelchairs in Africa and Eastern Europe in 1999. According to the Foundation's newsletters, "his personal contact with the recipients gave him a greater understanding of how much hope and happiness can be given to a person who receives a wheelchair,' and he started the Foundation the next year (Changing the World Wheelchair Foundation Newsletter, vol. 1). Behring contributed $15 million of his own money and the organization quickly grew to be able to provide 10,000 chairs per month.

The Wheelchair Foundation is funded through donations from individuals as well as a variety of corporate, ethnic, and religious donors. The organization matches each $75 donation with their own funding to purchase and donate a chair for $150. They also receive $5 million in funding from the United States Agency for International Development (USAID) in the State Department and a $5 million transportation grant from the Defense Department to ship and deliver wheelchairs to Afghanistan, Iraq, and other countries in conflict.

The Foundation primarily purchases wheelchairs made in China and ships them (280 per container) to partnering non-governmental organizations in recipient countries. They are currently trying to expand to have chairs manufactured in other countries as well. For example, according to Vice President of Public Education Chris Lewis, India has so many trade barriers to importation that the Wheelchair Foundation is working on a way to manufacture chairs in India instead of trying to import them. They also occasionally work with small, local manufacturers in some countries, such as Vietnam, who have smaller capacity but can match the price of Chinese factories.

The Wheelchair Foundation works with a wide range of partners to actually distribute and deliver the chairs, including First Ladies' charities in Central and South American countries, the Church of Latter Day Saints, and over 2,000 Rotary Foundation clubs around the world. They seem to be fairly flexible, depending on needs; for example, they used the Red Crescent Society to distribute chairs in Iran and the U.S. Army in Afghanistan. The partnering organizations pay the duties on the containers, clear them through customs, and distribute the chairs. Some partner organizations have the expertise in rehabilitation, but most do not provide services. They collect a photograph of the recipient in their new chair and their story, which the Foundation passes along to donors.

The Foundation has recently started the Behring Wheelchair R&D Center at Dalian Jiaotong University in Dalian, China to work on wheelchair design and distribute drawings to allow local shops to make chairs.

You can learn more about the Wheelchair Foundation on their web site at www.wheelchairfoundation.org.

... And Moving Forward

This article offered an overview of some of the major non-governmental organizations involved in provisioning wheelchairs for people with disabilities in developing countries. On one hand, all of these groups are responding to the same problem: a need for wheelchairs in the developing world. On the other, there is an enormous diversity of approaches to design, production, distribution, and delivery.

The second part of this article will address these issues from a more local perspective. Simply put, what are the results of these various approaches? What impact do they have on wheelchair users, both technically in terms of durability and socially in terms of quality of life?

Acknowledgements

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