Living With Disabilities: From Kidnapped Bride to Community Hero

One woman’s struggle to improve the lives of the disabled within her community.

Title Image: Baktygul, the founder of the Beypil Rehabilitation Center of Bokonbeyvo.

 
West of Kyrgyzstan’s capital Bishkek, over the peaks of the Tien Shan Mountains, is Issyk Kul Oblast. Travelers from distant lands frequent this region in the hopes of seeing the unparalleled beauty of Eurasia’s highest lake, Issyk Kul. The gated beach communities create an allusion of a prosperous and developed retreat, but unbeknownst to most travelers, life for the majority of Kyrgyz people within this overwhelmingly rural area is an unrelenting fight for survival.

Outside of these vacation getaways, removed from adequate medical facilities, public transportation and commerce, remote villages speckle the mountainsides. Such a difficult environment has disproportionately affected the disabled who lack the most rudimentary facilities and are unable to receive medical treatment. The Kyrgyz government provides for these families to the best of their ability but given the state’s limited financial means, the average pension of $17 a month is scarcely enough for a basic diet of milk and bread.

After witnessing first hand the challenges her daughter faced with a disfigured cleft palate, one woman by the name of Baktygul, set out to tackle this problem gripping her community by creating a rehabilitation and work center for the disabled. At first openly ridiculed and ostracized, Baktygul struggled to secure financial, community and government support. Undiscouraged, she worked two jobs while raising a family to realize her dream.

 

By 2005, Baktygul’s dream became a reality with the founding of the Beypil Rehabilitation Center. Located in the town of Bokonbeyvo, this center is the first and only of its kind in all of Issyk Kul Oblast and serves 150 children from 12 villages. Baktygul’s organization has an open door policy for all disabled children and provides physical therapy and rehabilitation free of charge. Furthermore, the center gives children a new outlook on life, allowing them to realize their full potential and self worth. Through treatment, Beypil addresses the greatest challenge facing disabled children; social isolation from one’s community and peers.

Currently the center operates on a meager $1,000 a month to cover all operating, employment, and material expenses. Survival off this paltry budget can be credited to the center’s effective use of community’s resources. For example, when Beypil didn’t have the funding to purchase expensive wrist splint for a 7-year-old boy born with severely underdeveloped muscle tissue, they used the branches from the indigenous Juniper tree to form a splint. Now he has near complete mobility in his right hand and can attend school with his peers. Effective use of community resources stretches beyond material goods. Many villagers donate their skills and expertise much like Baktygul’s brother who donated his time to install a handicap accessible toilet.

 

The effects of disability extend beyond the diagnosed and seriously impact the families of the disabled who are prevented from pursuing economic opportunities to care for their loved ones. Recognizing the economic vulnerability of these families the Beypil Center employs a total of 9 disabled children, and members of their family, to make traditional handicrafts, which are then sold to tourists. Baktygul recently received sewing machines from the Eurasia Foundation of Central Asia and with their support in the near future she will open another employment center in the neighboring village of Konur-Olon.

Behind Baktygul’s youthful giggle is a driven woman with a surprising story. Her life up until the age of 18 was no different from many Kyrgyz women living in the rural countryside during Soviet times. She enjoyed studying at the local vocational school and spending time with her girlfriends. One summer morning her life was forever changed when a man approached her offering a ride. Baktygul gladly accepted his kind gesture but unbeknownst to her, the man’s brother had chosen her to be his bride. Upon accepting the ride, Baktygul was forcibly taken to her future suitor’s parent’s home where she resisted marriage for 3 days by refusing to don the marriage veil that signifies a woman’s acceptance in the Kyrgyz tradition of bride kidnapping. As the days passed, she spoke candidly with her suitor’s father who through two sleepless nights and a barricaded door convinced her that his son was a nice man.

Now happily married for over 20 years, within Baktygul and her husband’s relationship, the responsibilities traditionally expected of a man and a woman in Kyrgyz society have been reversed. In this unorthodox relationship, Baktygul’s husband rears the children and prepares most meals, while she enjoys a great deal of freedom spending the majority of her time running the center. As fate would have it, her husband’s love and support has been a driving force behind her involvement with disabled children. Their fondness for one another is striking given the circumstances in which they met, but Baktygul insists that her, “soul is immensely grateful for his love.”

Desperation

While visiting the areas served by the center, we traveled to the mountain village of Konur Olon, a remote and isolated village that rests in a barren and rocky valley. Transportation to and from Konur Olon, a town of barely 1,000, is expensive and infrequent; the unpaved dirt road to this village makes donkey the preferred mode of travel. The average journey to town takes one and a half hours and is over 6 dollars each way, an outrageously unaffordable sum for most villagers.

In Konur Olon we met Asel, a soft spoken and welcoming 33-year-old woman suffering from advanced rheumatoid arthritis – a condition treatable with medication and massage therapy. When Asel was a small child, her father died from a sudden heart attack leaving her mother to care for her 6 brothers and sister surviving off of her government pension and public charity. Burgeoning financial barriers prevented Asel from receiving treatment and as time passed her condition worsened. Now Asel’s body is permanently locked into an S-shape. She is unable to use the restroom on her own, write, or even read. Living in constant pain she only sleeps 3 hours a night, mostly left alone with her thoughts staring at the barren concrete walls of what she jokingly calls her living coffin. Tragically enough, Asel often goes hungry as her mother spends what little resources they have in search for her only source of comfort – alcohol.

Asel spoke of her dreams and desires. Lying in her bed, she said she only hoped to feel the warmth of the sun. Before leaving, she whispered to Baktygul that she didn’t want her mother to bear her burden anymore begging us to take her away to the state rehabilitation center in Bishkek. Such a desire, according to Baktygul, “is a death wish given her fragile state and the poor treatment of patients at this center.” To this day, Asel remains in that 9 by 10 room, a prisoner to her condition waiting patiently for treatment or death, whichever one may come first.

Community Based Solutions &  Baktygul’s Work

Baktygul finds her work most rewarding when she sees these children achieve their dreams and desires which are no different from other kids their age. Ermet, a young man suffering from advanced cerebral palsy, just wants to go outside and see the world for himself, he wants to see lake Issyk Kul, he wants to play with other kids -something he has never done at the age of 21. Bektagul’s work helps children like Ermet achieve such modest dreams that are undeniably possible through treatment and rehabilitation.

All of Baktygul’s work at the Beypil Rehabilitation Center is living proof of the tremendous effects of female empowerment and women’s ability to uplift the livelihoods of families and entire communities. Baktygul, on her own initiative, set out to better her community and with the support of her family and international donors like JICA, EFCA, and STLI, she was able to do just that. She is a constant reminder of the amazing things women are capable of if given the opportunity, particularly in a part of the world where women are often marginalized.

Reflecting upon the time I spent at Beypil with Baktygul, completing this piece was emotionally draining. Seeing the circumstances in which individuals like Asel are forced to live because of their disabilities is a difficult sight that will forever remain with me. In closing, I am thankful that women like Bektagul make the day to day sacrifices necessary to provide a better life for the world’s Asels and Ermets.

For those interested in volunteer opportunities or donations the Beypil Rehabilitation Center can be contacted at found_beypil@mail.ru