The Importance of Mobility

The ability to freely move around your environment and the agency that comes with it are some of the privileges most easily taken for granted by able-bodied people. Growing up with full mobility, surrounded by other people with no issues with mobility, makes it easy to assume that attending school, participating in sports or exercise, traveling to engage in hobbies or work, and expanding your social circle beyond the confines of your home seem like basic facts of life. Unfortunately, this is not the case in most of the world.

In low-resource countries, which are home to 85% of the world’s population, reaching these activities often means hours of walking and mixing multiple types of transportation. Sometimes getting to school or work means walking a few kilometers to the nearest road, then taking a motorcycle to the bus, then riding the bus the rest of the way. If your body makes this kind of travel harder, a journey like that can be completely unmanageable, barring you from participation.

People with a physical disability have the same desires as everyone else: to learn and grow, contribute to society and their families, explore, pursue a career, and build social circles but the barrier to entry for these activities is much higher for them. Self-propelled movement, like crawling or walking on one’s hands, is often painful, time-consuming, exhausting, or impossible. Nevertheless, millions of people make this work every day, because giving up the independence of mobility is unacceptable to them. There is however a better option than self-propelled movement, and that is the use of assistive devices, including wheelchairs.

The Effects of Wheelchairs

Surveys on the effects of wheelchairs distributed to people with disabilities in developing countries suggest that access to a wheelchair improves a wide range of surveyed categories, including access to education, self-reported happiness, economic health, physical health, and many more. One of the most commonly measured categories is economic health, as it can radically affect every other category. Without an income, a person’s health is likely to deteriorate because their access to medical care, food, water, and education is reduced.

Individuals with mobility disability in disadvantaged countries have a much harder time finding gainful employment because their ability to travel to, from, and even inside a workplace is severely limited. Economic opportunities increase vastly when that individual receives a wheelchair. When compared to individuals with mobility impairment who do not have a wheelchair, those with a wheelchair are 20% more likely to have a job, spend 1.5 fewer hours per day begging and 1.7 hours working, their weekly income increases by 77%, and they are 23% less likely to report they cannot afford daily necessities (1,2).

Inappropriate Wheelchairs

These findings are probably intuitive to all of us, and they suggest a clear solution: we should find a way to import low-cost wheelchairs to developing countries as quickly as we can. The reality of the situation, however, is less intuitive. Ultimately, most of the thousands of wheelchairs that are donated to people in developing countries every year are broken, abandoned, sold, or simply unused. A survey (4) conducted in West Bengal found that 71.6% of supplied wheelchairs were either sold or not used six months later.

If having a wheelchair vastly improves the quality of life for an individual with a disability, then why are so many of the wheelchairs provided by NGOs, charities, and hospitals not being used? The primary reason is that while many wheelchairs are distributed to people in need all over the world, most are not appropriate wheelchairs.

The World Health Organization defines an appropriate wheelchair as one that:

meets the user’s needs and environmental conditions
provides proper fit and postural support
is safe and durable
is available in the country
can be obtained, maintained and serviced in the country at an affordable cost

The ways in which most donated wheelchairs fail to meet these standards are complex, but we will discuss a few of the most important ones here.

Most donated wheelchairs are hospital wheelchairs, also called transport or cruiser wheelchairs, designed for short-term use. They are light and foldable, making them easy to transport up or down floors or between different patient’s rooms. They are designed for short-term use by patients traveling over smooth floors and are fantastic for this purpose. They are not, however, designed for navigating rocky roads for kilometers at a time every day for years. They are also not designed for people who need constant postural support or to use a wheelchair at work or school for upwards of six hours at a time every day. This mismatch of tools and environments leads to wheelchairs that break, cause more medical problems than they solve, or cause the user pain. With only this inapplicable tool at their disposal, it’s easy for a person to conclude that the best thing to do with their donated wheelchair is to throw it away, sell it, or leave it to collect dust in a corner.

Many of the roads in low-resource countries are rough dirt roads with holes, rocks, and deep grooves carved by rain water. Hospital wheelchairs are not well suited for these roads because of their four wheels, light frame, and lack of padding to cushion the user from bumps or holes in the road. These wheelchairs also break more easily and are harder to repair. Cruiser wheelchairs are composed of welded aluminum, molded plastic, and specialized hardware which are not easy to find in rural areas of low-resourced countries making the disposal of the chair a far more attractive option.

Even more concerning than wasted and unused wheelchairs are wheelchairs that cause active harm to unwitting users. Improperly fitted wheelchairs, or ones without enough cushioning, cause pressure sores when they’re used for a long time. Pressure sores are injuries sustained to the skin caused by prolonged pressure stemming from the user’s own body weight. They can be incredibly painful and, at worst, can become infected and threaten the user’s life. A lack of padding forces the body’s weight to be focused on the bones of the hips instead of being distributed through the thighs, increasing the danger of developing a pressure sore. A sling seat, as seen on many cruiser hospital chairs, can stretch and lengthen over time, which causes the hips to tilt. This tilt places more weight on one side of the hips, making the uneven pressure even worse.

Hospital wheelchair footrests are two independent flat planes of plastic meant to support the feet. They can be tilted forward or backwards but, are usually, not adjusted to be higher or lower in accordance with the user’s leg length. Footrests that are too low or too high place more weight and pressure on the end of the thigh or buttocks, respectively. Wheelchairs with sides that are too narrow place pressure on the sides of the torso, thighs, and hips and threaten to cause pressure sores or friction rashes as the user’s body rubs against the chair as they propel it.

Contractures are a common and important concern for people using improperly fitted wheelchairs. A contracture is a physiological change in soft tissue composition that reduces a joint's range of motion. They occur after prolonged periods of immobility because the body’s tissue adapts to its new reduced length. Sitting in a wheelchair, particularly one that is too small, can lead people to sit in unhealthy postures, and over time those postures become permanent.

The majority of hospital wheelchairs use sling backrests and seats. The term sling comes from fabric stretched between metal, forming a “sling” to support the thighs and back. The advantages of a sling backrest and seat are their ease of production, inexpensive material cost, and ability to fold into a much smaller footprint for storage. The issues with sling rests arise with age and overuse as they are designed for hospital transportation and not constant postural support. Old sling backrests stretch and can cause contractures as the back bends forward to match the sling, the neck cranes up to maintain a forward gaze, and the shoulders flex and round forward to compensate for the spine. All of these changes put a strain on the body’s tissues in painful ways.

Inappropriate wheelchairs, particularly sling-back chairs, lack lateral trunk support which can lead to the development of scoliosis or the progression of the condition in users who are already scoliotic. Severe scoliosis (the spine curves away from the midline of the back) combined with exaggerated curvature of the spine is another common problem that requires the wheelchair to adapt to the user’s condition. I have encountered several users with cerebral palsy combined with severe scoliosis because spastic muscles pull their spine and ribs out of alignment. This muscle activation can be managed with therapy and proper positioning to combat the development of scoliosis but if the user is left to lie or sit with poor posture for hours at a time, the spine and ribs can radically shift and result in serious asymmetry. At this point, I know of no therapy that can correct the problem. This type of asymmetry in the spine completely prevents the individual from assuming a standard sitting posture in a typical chair or wheelchair. Designing a chair to fit this individual can be a challenge as each presents with a unique spine and varying levels of muscle tension, but having a chair designed for their needs will at least allow them to sit up, prevent further deterioration of their condition, and give them increased mobility.

Appropriate Wheelchairs

The above problems can be combated or completely eliminated by providing the user with an appropriate wheelchair.

Ensuring that a wheelchair can be maintained in a user’s immediate area helps ensure that chairs aren’t quickly broken and abandoned. Usually, this means manufacturing with tools and materials that are reliably available in the target country. Our wheelchairs (and many other organizations that focus on appropriate wheelchairs for developing nations) use steel, foam, wood, rubber, and fabric which are all easy and reliable to source in even very isolated parts of East Africa. Anywhere that a user takes their chair, they should be able to find the materials and craftspeople they need to maintain it.

An appropriate wheelchair also needs to be adapted to the user’s environment. A cruiser wheelchair has four wheels close together, which makes it easy to maneuver in cramped indoor spaces. Using a frame like this on a rocky road is a difficult and dangerous task because it doesn’t take a large bump or slant to tip the chair over. Based on our knowledge of our users’ environments, we make wheelchairs with heavier, fixed frames with wide three-wheeled bases.

Every wheelchair user has unique needs based on their lives, goals, and physical condition. Some people’s needs are simple and can be met with a low-cost, simple wheelchair. Some people’s needs are very complex and require fully custom solutions and the heavy involvement of a physical therapist. Either way, all people need to be assessed by someone trained in wheelchair provision so that those unique needs can be established. Very often, the assessment will determine which postural supports will be necessary.

Postural supports are additions or changes to a wheelchair that help to hold people in a healthy posture if they don’t have the muscle control to do it themselves. These include chest belts, side torso supports, hip belts, foot straps, back wedges, and many other tools.

Lynette’s Story

One of our users is an excellent example of an individual whose life is vastly improved by access to a wheelchair, but only if that wheelchair is specifically designed to accommodate their anatomy. Lynette is a young girl who lives in Arusha, Tanzania. She loves to watch cartoons and wants to be an English teacher when she grows up. Lynette was born with spina bifida, a birth condition marked by the vertebrae of the spine not fusing properly in the womb, allowing spinal fluid or even the spinal cord to leak out from the vertebra and form a bubble on the baby’s back. This condition can be treated with surgery, although not all are fortunate enough to have access to this intervention. Even with surgery, the shape and integrity of the spine can be radically changed and nerves controlling muscles and sensation can be damaged. These changes alter the requirements of a wheelchair meant to fit the individual.

Lynette received surgery for her spina bifida, but some damage to the spinal cord remained. She cannot move or feel below her waist and, uniquely, the shape of her lumbar spine was radically changed. Her lower spine has an extremely exaggerated forward curve. When she sits, her torso is pushed over her thighs by the curvature of her spine and it is nearly impossible for her to sit comfortably in a chair with a straight back.

If she received a cruiser-style wheelchair that didn’t provide support for her unique spine, the already problematic hyperlordosis could be increased or complicated by the development of further scoliosis. What’s more, without a usable backrest she would quickly tire herself out using her back muscles to support her torso.

An appropriate wheelchair can be made for most people with small adjustments to a core design. You can see many examples of wheelchairs that fit different bodies by trying out our wheelchair configuration page. However, sometimes providing a truly useful wheelchair requires some experimentation, creativity, and customization.

For Lynette, we took comprehensive measurements and combined knowledge of human anatomy, posture, wheelchair construction, and Lynette’s own unique medical history to design a backrest. The resulting design follows the curvature of her spine, allowing her to rest her upper back on the pad so that she can relax and be supported. The final wheelchair is a unique tool, meant for Lynette and Lynette only.

Conclusion

The most important thing to remember about inappropriate wheelchairs is that they have problems beyond being insufficient. They can be actively harmful and waste the very limited resources available to people with disabilities who need aid.

Providing an appropriate wheelchair for a person who needs one can be one of the most impactful ways to help them, but it is not a simple process. It takes diligence, knowledge, and time. And that is what Kyaro is committed to doing.

What makes an appropriate wheelchair, and why does it matter?