CHAPTER 13

Women with Disabilities

Recollections from Across the Decades

MARY MACMAKIN

Nearly every problem Afghan women face in their lives—poverty, widowhood, lack of livelihood, spousal abuse, lack of education, high maternal and infant death rates—has been reported extensively, but, to my knowledge, the challenges faced by Afghan women with physical disabilities and the treatment facilities available to them have not been widely reported. A 2004 countrywide National Disability Survey of Afghanistan, conducted by the United Nations to enable intelligent planning for physical rehabilitation programs, found that an average of 2.7 percent of Afghans are disabled, of which fewer than half (1.1 percent) are female.1 The number of these Afghan women and girls whose injuries are caused by buried land mines, bombs, and artillery shelling since the 1979 Soviet invasion is staggering, coupled with increased disease and the challenges of surviving in the economic collapse with the fall of the Taliban in 2001.

The burden on families and the disabled women themselves are of deep concern: How can they afford treatment? Will they get better? Who will cook and keep house? Ingenuity, determination, family devotion, and courage define some of the most basic ways that women and families of the disabled cope, often in unimaginably difficult circumstances.

What follows are anecdotal accounts of my experiences with disabled women in Afghanistan as a United States physical therapist working in Afghan clinics and homes from 1961 to 2005.2 I begin with a brief history.

TRADITIONAL MEDICINE: AN OVERVIEW

Traditional medicine was practiced throughout Afghanistan until around 1900. Common sense and curative wisdom were passed down through generations of healers. Older women, with knowledge of herbs and healing techniques learned from their mothers and grandmothers, were called on in times of sickness. The mullahs had a share in healing practices, using dahm, the power of breath and the words of the Qur’an Sharif, folded into a little cloth packet worn around the neck or pinned to the shoulder seam of a child’s dress or shirt. For broken bones and joints “out of place,” the nearest shikesteband (bone setter) was sought for his skills passed down from father to son in setting fractures and reducing joint dislocations. Falling off the roof of a one-story mud brick home is a common risk for children. The shikesteband stabilized a child’s wrist fracture with thin wood splints held in place by cloth soaked in egg yolk and secured with string. When dry, this was an effective method of casting.

Larger communities and towns had hakims, self-educated men who dosed with powders and potions from their well-guarded boxes and bags. They made the medicines themselves from roots and herbs or purchased them from Indian or Burmese traders. Today, the sources of traditional medicines, other than Afghanistan itself, are generally India and Pakistan. In the mandayee, the main bazaar for food staples, Sikhs preside over a colorful array of healing roots, seeds, stones, and powders kept in used kerosene tins. More expensive medicines are stored in smaller tin boxes on shelves behind the shopkeeper, who is knowledgeable about the uses of each one. These various practitioners remain the medical mainstay of rural communities and even continue to practice today in the capital city Kabul.

WESTERN MEDICINE AND THE NEW PRACTICE OF PHYSICAL THERAPY

Western medical techniques may first have been introduced by Amir Abdur Rahman (r. 1890–1900), who imported a Scottish nurse for the women of his harem. The royal family had access to travel in the West and thus experienced the efficacy of Western pills and potions and wanted the same medical care as was available in Europe and the United States. The Amir’s grandson, Amanullah (r. 1919–1929) was open to new ideas and had as advisor and father-in-law Mahmud Tarzi, a highly educated and energetic man who started the first newspaper in Afghanistan and motivated Amanullah to introduce the idea of education for girls to a highly resistant population. “What man will want to marry a girl who has been to school?” cried thousands of appalled Afghan mothers.

As an example to his countrymen and particularly the women, Tarzi arranged for girls of the royal family to study nursing in Turkey. These protected young women had an unimaginably hard time under severe Turkish nursing discipline, dealing with men, bedpans, and cleaning up after sick people.

Western medical education soon followed, as young men were sent abroad to study until the 1950s, when Kabul University established its Department of Medicine, staffed and run by the French. The government also began building hospitals, open to all without charge. Women and men were kept in separate wards.

Ibnesina was a teaching hospital for interns and residents from the university medical school and treated a wide range of internal diseases and neurological and orthopedic problems. It was here I first volunteered in early 1963 as a professional physical therapist.3 Although orthopedics as a branch of medical practice was known to the Kabul community, physical therapy was not, so I had the privilege of demonstrating what PT could—and could not—do.

Among other things, I expected to find the kinds of fragile knees and hips found in American elderly. I looked in vain. Lifestyle appeared to be the answer: in the States, elderly people are pampered and well-cared for. Elderly Afghans benefit from, among others things, walking everywhere and the fact that there are no chairs, so they must use their muscles to get up from the cotton floor mat. This keeps their bones and muscles in good shape with less chance for demineralized femurs and sacrums.

Kabul’s Wazir Akbar Khan Hospital was built in the 1960s and was the country’s designated orthopedic center. The Japanese government helped develop physical therapy and X-ray departments at WAKH by donating equipment and training technicians. Imamuddin Shams was the first Afghan student sent to Japan to learn physical therapy. He returned to train a core group of nurses. As a result, there was a full range of medical and surgical help, but what about braces for post-polio children,4 special shoes for foot problems, artificial limbs for amputees, and crutches and wheelchairs?

To fill the crying need for these special appliances, the Ministry of Public Health asked the World Health Organization for help. WHO sent a Swiss orthotics and prosthetics expert from its Regional Training Center in Tehran. With funds raised by the newly established Afghan Society for the Rehabilitation of the Physically Handicapped, young Afghans were sent to Tehran to learn the art of prosthetics and orthopedic shoemaking. This completed the WAKH rehab staff. Having its own trained experts in its own center was a huge leap forward for Afghanistan.5

The International Afghan Mission, having built a modern and successful eye hospital called Noor (light) and trained men and women to staff it in the early 1970s, saw the need for professional physical therapists of both sexes to be trained according to international standards. They built and furnished a physical therapy school with foreign-trained instructors and graduated several dozen PTs to staff hospitals in Kabul but not yet in the provinces. Work in the provinces has always been shunned by Kabulis as “dangerous,” too far from home, and these new PTs felt the same.

In my experience, Afghans are highly persistent and will pursue wellness wherever there is word of someone or someplace with a cure—whether at a hospital in Kabul, at a rural clinic, or from traditional healers. But thousands of people far out in the country—many seeking safety in the mountains from one warlord or another—live at barely subsistence levels with their neighbors, far from even the most basic health clinic. Coping with serious diseases and disabilities requires money and transportation. Families often ask for help from passersby, foreigners in particular. A repeated cry, “Khoda mehraban ast” (God is kind), reflects a faith in divine justice that sometimes does not reach far enough but helps people endure until death carries them away.

Years ago, in the northeast corner of Badakshan, a man came to talk to me and my hiking group as we rested by the trail. His daughter was sick. Would I see her? In a dark little room, on dusty old bedding, the twenty-year-old lay emaciated by rheumatoid arthritis, alive despite a damaged heart, unable to eat much of anything. Like so many of the seriously disabled in the remote areas of Afghanistan, she was far from help, sustained by her own weakening life force and the enveloping love of her parents. I felt helpless for there was nothing I could do. I prepared some gruel with flour and water and a little sugar which she gamely tried to eat; I didn’t even have the money needed to carry her to a hospital in an urban center. We hiked on, but the picture of that girl in her dusty bed remains with me, thirty years later, and reminds me that the task remains to train male and female students for physical therapy in their home provinces.

THE GREAT DISASTER

In 1973, after forty years of peace and slow but steady progress under King Zahir Shah, the king’s cousin Muhammad Daoud Khan staged a bloodless coup and ruled until he and his family were killed in a communist uprising five years later. Afghanistan’s accomplishments proved fragile as its leadership fragmented. In 1979, after a year of misrule and further assassinations, Soviet troops and tanks invaded, bearing the slogan, “peace and progress for Afghanistan!”

So began what I label the Great Disaster. Thousands of Afghans became refugees inside and outside the country. Soon after the fighting between the Soviets and Afghan resistance forces commenced, humanitarian non-governmental organizations began setting up hospitals, rehabilitation centers, and clinics in Peshawar, Pakistan, to take care of the war wounded and disabled—the Mujahedin. The hospitals in Kabul continued to operate but under Soviet control. The Mujahedin now were the enemy and could not use these facilities.

The makers of armaments—the United States, the USSR, Sweden, and Israel, among others—apparently entered a sadistic competition to see who could create bullets to maximize flesh shredding and bone splintering. Munitions designed to rip and tear human bodies resulted in lifetime deformities. I first witnessed the results of the arms-makers’ “art” in 1988, when I worked in Peshawar in hospitals for the Mujahedin. I am still haunted by those terrible wounds.

Among the NGOs then active in Peshawar, working with rehabilitation for the wounded and disabled were the International Committee of the Red Cross (ICRC), Sandy Gall’s Afghanistan Appeal (SGAA),6 the Swedish Committee for Afghanistan (SCA), Kuwait Red Crescent Society, and the Pakistan Red Crescent Society, which ran a rehabilitation center geared especially for paraplegics. With the withdrawal of Soviet forces from Afghan soil in 1989, most of these agencies shifted their rehab facilities to Kabul.

ICRC provided the most ambitious and complete care, with hostels for men and women with disabilities from distant provinces; a production center for wheelchairs, crutches, artificial legs, and other appliances; and a physical therapy department to ensure the client was able to make use of her appliance.7 SGAA moved partially to Jalalabad in 1993; the rest of their technicians went to Kabul in 1996, the same year I founded PARSA, Physiotherapy and Rehabilitation Support for Afghanistan, a private, nonprofit NGO working directly with Afghanistan’s disadvantaged people, widows, orphans, and the disabled.8

Because of the difficulty and expense of transportation from the provinces, ICRC and SGAA also set up orthopedic workshops and rehab centers in Mazar-i-Sharif, Faizabad, and Charikar. In Bamiyan, ICRC instituted a weekly bus service for amputees and other people with disabilities. Nevertheless, there are still villages and communities far from these centers, requiring a long, demanding journey for sick and injured people.

Physical therapy is not the only treatment. In the 1990s, the Swedish Committee introduced a system that had been developed and perfected in Vietnam for training community “rehabilitation workers” to help disabled people in their own communities. The system simplified diagnosis by easily observable signs and encouraged the workers to create crutches, splints, and other devices. Each community had a rehabilitation committee that met regularly, cheered the disabled person to do his or her exercises, and oversaw the work of the rehabilitation workers.

ENCOUNTERS WITH COMMON DISABILITIES

A housewife sent word that she was “sick” to the SCA clinic in Taloqan where I worked and taught from 1992 to 1994. My student PT, Soraya, and I went to her home and found her doing the weekly wash, sitting outside on a tiny stool surrounded by tubs, buckets, a little portable charcoal samovar for boiling water, piles of dirty clothes on one side and the washed ones on the other.

This woman told us her hands were painful. She could not scrub and wring as she wanted. I told her that moving and working the arthritic limbs were among the treatments for arthritis, along with heat and aspirin. Soraya sided with her, however, letting the pain determine how much scrubbing she could do. I found frequently that pain was the guide. Mothers would not insist on treatment for their children if the child cried. “No pain, no gain,” the Western therapist’s mantra, has no place in traditional mothering, so the pain is allowed to be in charge.

A few girls have been brought to the PARSA clinic with varying degrees of disabling arthritis and some have regained functional use of their hands and arms, depending on how much they trusted the PT and how determined they were. Parents, feeling the pain vicariously in their children, were not much help in the exercises.

The rehab workers who had been trained at the Swedish Committee clinic during my time in Taloqan took me around the countryside to see disabled people they had located and were working with. At one compound we were greeted at the gate by Alida, a girl of about fourteen with rather marked spastic cerebral palsy, who nevertheless had developed a unique way to move around, almost flinging herself forward, swiftly. All the family was away for a few hours and Alida was happy to be the chowkidar (doorkeeper). She seemed unconcerned about her unusual gait and condition, showing the natural self-esteem of many Afghans, so I wasn’t surprised when she refused treatment at the SCA clinic. The spasticity of cerebral palsy can be reduced and the child’s potential for education assessed. But Alida was happy with her family and her life in her own compound and knew she would be teased in another environment.

In Kabul, in 1998, I visited the tiny, neat home of a hairdresser in a suburban hillside community. A very small, bright-eyed, fifteen-year-old girl lay on a cotton mattress in the living room and greeted me with a big smile. Her hair was brushed into two big curls tied with red and blue ribbons. Her mother looked proudly at her daughter, bed-bound with cerebral palsy, and explained that she didn’t have the money for a taxi to take her to the physical therapy department of the hospital. The mother was taking excellent care of her daughter, but her daughter would have benefited from speech therapy, as well as a chair and tray table to help her sit up to eat and see people. Unfortunately, Kabul did not have any speech therapists; however, we ordered a PT to come to the house to work with the girl and her mother.

Poverty has forced Afghans to be thrifty. Fuel is costly, therefore in winter the household moves into one room for eating, living, and sleeping. In the countryside, a low, quilt-covered table, a sandali, is set up in the middle of the usually small living room, where the whole family sits with the edge of the quilt pulled up to their shoulders and long cushions at everyone’s back. A brazier under the table is filled with coals, keeping everyone’s lower half warm and cozy. The family gossips, exchanges news, plays word games, eats supper, and drinks tea until it is time to sleep.

My happy memories of these intimate family moments are marred by the children with severe burns on their feet and legs from coming into contact with the burning brazier. During a bomb attack on her village, one terrified mother held her baby under the sandali to escape the bombs, mistaking the baby’s screams for fear of the bombs rather than the pain of a burning foot, which was eventually lost.

I once watched a twelve-year-old boy playing soccer on one normal foot and on the other leg he bore his weight on only the bottom point of his tibia. The foot was badly burned under the sandali when he was a baby. He refused to come to the clinic for an artificial foot having earlier experienced painful doctoring, and his father did not insist.

The cruelest aspect of war is the damage done to noncombatants. A neighbor searched the garden where her son had been when a missile struck, but she could not find even a finger of her child to bury. One of my staff lost her two brothers to a random missile as they waited to cross the street. No one in Afghanistan is immune from missiles coming from the air, mines lodged in the ground, or stray bullets from trigger-happy Mujahedin, Taliban, or foreign troops. If not killed outright, the victim might receive a head injury, which means neuromuscular disabilities, similar to a stroke. Or the injury might result in an amputation.

A twenty-one-year-old “daughter of the house,” with head injuries from a bomb blast, lives with her parents in a tiny place in one of Kabul’s zurabad hillside settlements—the crowded mud brick homes of poor folk seeking refuge in the city. Being severely disabled, spastic, and bedridden, this daughter needed total care for bathing, toileting, and dressing by her parents who take care of her as best they can. We suggested she attend literacy classes at a nearby center for people with disabilities and the jobless. We would pay for a taxi. She agreed at first, but then she declined, explaining that carrying her up and down the narrow stairway was too much for her parents to manage. (Unspoken but always present is the unmarried Afghan woman’s fear of being seen by unrelated males and the difficulty of toileting.)

The Soviets targeted children with small bombs resembling toys dropped from warplanes. The Ministry of Education and several NGOs had extensive education campaigns to warn children not to touch these tempting objects, but many never heard the warnings. Shepherds, boys and girls, tending their flocks in mountains were most vulnerable. In 1995, at the local hospital in Charikar, a large town north of Kabul, a doctor told me an average of two shepherds a week were brought in with mine injuries, usually in the foot and leg, requiring amputation.

A university graduate was severely injured in a rocket attack, losing her right leg at the hip and her right arm at the shoulder. She was hired by Oxfam International in Kabul, where she could sit in a wheelchair to do her work. I watched her slowly, gamely climb the stairs to her office managing her right leg prosthesis. Normally, disabled women have no chance of marriage and she had no hopes of it, until another Oxfam employee, taken by her beauty and courage, proposed. I saw her a year later at her home, radiant with a baby and a servant girl to help with the chores—one of the fortunate few.

And there is Rahima, a friend from PARSA’s early days, who came to the door with her teenage daughters and asked for help. Her flail arm was only one tragedy that happened to her on the day a stray bomb from an abortive coup by an Air Force general destroyed her home and killed her husband and his brother in 1994. (My PT student in Taloqan was widowed during that same brief revolt). The bomb rocked the neighborhood. People ran to help. Rahima called from under the rubble. People rushed to find her. Frantically tossing mud bricks and dirt aside, they saw her left hand and began pulling it. She was dragged from the rubble, thankful for her life, but the nerves in her shoulder and arm were ruptured, leaving the arm flail except for the curling tips of her fingers. A skilled dressmaker, she continued to sew with some help to thread needles, but she and her daughters were homeless nomads.

Eventually, one daughter became my deputy at PARSA and the family could rent an apartment. Rahima became a prolific doll maker and earned a modest income from her Taliban dolls. She is so cheerful, I love to visit her. She is typical of many Afghan women with disabilities I have known: not letting her disability get in the way of her life, her happiness with her family and grandchildren. Whining and victimhood are rarely met with among poorer Afghans—there is no tolerance, no room for them.

COPING AND RESOURCEFULNESS

Habiba, a thirty-five-year-old housewife living in a small farming community near Taloqan, lost her right leg above the knee and was given a prosthesis made by the SCA Orthopedic Workshop. When I visited her, the leg was standing in a corner of her kitchen. She told me that although she appreciated it, the leg was not practical for the frequent sitting and standing transfers she had to make in her daily housework. She was managing well by using a crutch and her one leg.

Afghans live, eat, sleep, wash, and pray at floor level. Homes are not necessarily accessible to disabled women. There is usually no furniture. Mattresses are slept on, then folded in the morning and stored in corners or in the hall, where they will not get dirty until evening and dinner. When a guest comes, a mattress is retrieved and spread.

The floor covering—a well-worn carpet, felt rug, or a tarp in the poorest of homes—is swept every day so it is clean for sitting, but the disabled woman has to stand each time she needs to go to the kitchen or privy. Family members must help with these transfers. Making bread requires strong arms and good balance as the cook slaps the long, flat dough against the inside of the bread oven. This job can be delegated to the eldest daughter, the sister, or an auntie. But the disabled woman may need assistance in bathing, which takes place in a concrete-floored room with a bucket or ewer of warm water, and in toileting outside the mud brick home. Her clothing consists of a long-sleeved dress that hangs below the knees, several layers of underclothing and baggy pants, so dressing and undressing is awkward, especially when using a squat toilet. There is nearly always someone to help. To live alone is practically unheard of, particularly in the country.

Afghan housewives also suffer from a painful elbow apparently caused by forceful scrubbing and wringing of clothing. The musculature is strenuously and continuously overworked and develops symptoms similar to tennis elbow. The elbows can respond well to PT treatment, but many housewives don’t consider the pain serious enough to ask someone else to do the washing for the two or three weeks’ vacation the elbow requires. Nevertheless, husbands and children often help on laundry day by carrying buckets of water from the well. (Disk protrusions are also common, afflicting women, men, and children, and usually caused by 80- to 120-pound sacks of rice or flour, staples of the Afghan diet, which arrive at the family storeroom on someone’s bent back.)

Desperation can be the mother of invention and like many people in impoverished situations, Afghans find ingenious methods to make things work. A friend whose baby was born with spastic CP used her common sense to devise a treatment to overcome the flexion spasticity of the arms and legs by tying them in an extended position with soft flannel strips to the corners of his crib while the baby lay on his back. This gentle, gradual treatment was working and the baby’s arms and legs were nearly normal.

The eighteen-year-old sister of a commander, unable to stand due to severe spasticity of both legs, was carried into the SCA clinic in Taloqan. Her X-rays revealed two opposite lateral bends in her spine, forming a perfect “S” deformity from tuberculosis of the spine, with subsequent pressure on peripheral nerves. She needed traction to straighten out her spine, which could be a painful process. She had a strong, devoted mother, who understood the need for treatment, and a brother whose word was law!

A metal cot was found, and a big piece of plywood laid on it to keep the cotton mattress flat. A flannel-covered canvas belt was secured around her upper chest under her arms and attached with a rope to the head of the cot. Traction was then applied by a second flannel-covered canvas belt fitted around her hips from which a rope passed over the end of the cot to a ten-pound rock, producing continuous traction. The only relief she had was when she got up for the toilet. It was a primitive arrangement and painful, but her mother and brother kept her in traction until the leg spasms ceased. I visited a month or so later and was met in the garden by a young woman I didn’t recognize at first, now cured by homemade traction.

For the future, disabled Afghan women can expect better care from Afghan PTs, if the recommendations made recently by a British PT and her two colleagues are followed up.9 The researchers found that, generally, the therapists they studied worked in isolation with little chance to upgrade their skills; more specifically, they recommended the therapists use active rather than passive techniques and use their own reasoning ability to determine better treatment. Techniques for rehabilitation of the disabled will gradually seep into community consciousness as people see them used successfully by the rehab workers and PTs in their communities and as they become part of the traditional knowledge.

Afghan women used to regard disease or a disability as a curse, or Fate, or destiny carved out for her before she was born that she must endure. Most women nowadays, it seems, have transferred their trust to Western medicine’s little white, yellow, or mauve pill, or better, an injection. However, I have found this trust is often brief: if the pill doesn’t work by the next day, it is rejected and stored away. A friend with frequent aches and pains had a large plastic shopping bag filled with plastic pill bottles and paper squills of the West’s best, rejected, and unused but never thrown away.10

It is a pleasure to be with Afghan women, with or without disabilities. They are skilled at conversation and at including others in their emotional circles. There is an intimacy that encourages the telling of troubles or gossip or tales from the past. They love visitors; socializing is life and talking a kind of life blood. The visitor brings new stories and never arrives at an inconvenient time. Each guest is received separately and led into a different room, where another family member sits with them, keeps them company, serves them tea. The guest is quickly enclosed in a warm embrace of family, traditional courtesy, lively interest, and undivided attention. Disability disappears and sociability takes over.

I have experienced hard times, pain, hunger, and rejection only vicariously through the stories of Afghan women and their families. I admire their inner resources, their powerful core being, and their spiritual energy, which support and enrich them at all levels of their lives with the certainty of solid traditions and unquestioned and profound belief in Allah and his powers.

NOTES

1. Jean-François Trani, “The National Disability Survey in Afghanistan” (paper presented at United Nations Economic and Social Commission for Asia and the Pacific: Fourth Workshop for Improving Disability Statistics and Management, Bangkok, June 20–22, 2006). Available in its entirety at http://www.unescap.org/stat/meet/widsm4/session4_NDSA_Handicap_Inst.pdf.

2. I changed some of the names to respect the women’s anonymity. I apologize for any inaccuracies in time and place.

3. As a volunteer, I joined the CARE-Medico team to do PT follow-up on the patients treated by the orthopedic surgeon. I covered the hospital orthopedic ward and got to know the women patients and staff as my Dari language skills improved.

4. Many Afghan children were visited during the 1950s and 1960s with the scourge of poliomyelitis, as American children had been until the discovery of the Salk vaccine in 1949.

5. WHO later established the prosthetics and orthopedics workshop in a separate building from the hospital, where it was active for about twenty years.

6. Sandy Gall, a British journalist and TV anchor, saw firsthand the need for artificial legs for the hundreds of Mujahedin who had lost one or more limbs in the fighting. He, with his wife Eleanor and daughter Fiona, a physiotherapist, first opened and operated an orthopedic workshop in Peshawar in 1986.

7. The International Committee of the Red Cross Rehab Center was said to be the biggest and most complete in all Asia.

8. In 2005, I turned over my role as executive director of PARSA to Marnie Gustavson. For more about the organization, see http://www.afghanistan-parsa.org/.

9. J. Wickford, J. Hultberg, and S. Rosberg, “Physiotherapy in Afghanistan—Needs and Challenges for Development,” Disability and Rehabilitation 30, no. 4 (2008): 305–313.

10. One of the unintended functions of the doctors’ waiting room is to allow unrelated women to meet. Family histories are exchanged, illnesses reviewed, and opinions on medicines discussed. Since the wars, which made people far less trusting, women aren’t so open with their family affairs.