“I’m tired of staying silent”: young woman in Varzob speaks out on disability barriers
At 29, Lailo Mamadyorova lives every day with cerebral palsy, yet her voice has grown louder than her obstacles. The young woman from the Jangalak settlement in Varzob district is campaigning for the rights of people with disabilities — and drawing attention to discrimination, ignorance and neglect that she says she meets at every turn.
«As a human rights advocate, I fight so that people with disabilities can live independently, not be under someone’s patronage,» Mamadyorova says. «If we want to, we can do much, despite physical limitations.»
From vaccination to disability
Born in Dushanbe, Mamadyorova moved with her mother to Jangalak after her parents divorced. She grew up as a healthy child, she says, until at age four she was given the DPT (diphtheria‑pertussis‑tetanus) vaccine. Soon after, she experienced high fever and then developed muscle hyper‑tonus and contracting joints. By age five she was diagnosed with cerebral palsy.
Her parents lodged a court case, alleging the vaccine had been administered without their consent — but the investigation was closed after no one was held responsible. More recently, a doctor explained that in children with chronic or genetic conditions such a reaction is possible, Mamadyorova says.
A childhood in an ill‑equipped boarding school
At seven, Mamadyorova attempted to enroll in a mainstream school but was refused. The following year she was placed in a boarding school for children with disabilities in Hisor. She attended only four years. She recalls toilets on raised platforms that wheelchair‑users could not access without climbing stairs and rusty bathrooms fed by a warm saline spring — the only washing facility for the children. Staff neglected many duties, leaving children to help each other.
«When I finished fourth grade and came home, I told my mother I would never go back,» she remembers. The boarding school was theoretically a safe place, she adds, but the reality was far from it — she often fell, was improperly assisted, and the place was not adapted for wheelchair users.
An NGO called Dastgirii Ehtiyojmandon (Helping the Needy) had supported the institution: they built new toilets and bathrooms, but the director barred children from using them. Later the NGO shifted focus and opened its own center for children with disabilities — Mamadyorova was among those selected for this program. After two years of home‑based adaptations she entered mainstream school № 50 and successfully completed it.
Choosing independence
A turning point came when she was challenged by the NGO’s leader to reach a glass of water placed on top of a refrigerator. It took her 45 minutes, but she succeeded — and decided to no longer wait for others.
«About three years ago a girl in a wheelchair lost her mother and then died herself. I did not want such a fate. I thought about what would happen if my mother was gone…» she explains. She urged her mother to seek work so that she would not have to remain dependent. Initially Mamadyorova used a diaper and learning to use the toilet safely took bruises and months of effort.
«Many parents of children with disabilities become disabled themselves in their mindset, hoping for help. The worst feeling is self‑pity — and I left it behind,» she states.
She then found work at an online cosmetics store, and later took a remote job as an accountant: she was trained and given a laptop. She also completed human‑rights training at the invitation of the Organization for Security and Co‑operation in Europe (OSCE) and regularly speaks at events on disability rights.
Medical neglect in a remote settlement
In Jangalak, the only medical help is a local nurse whose district route rarely covers Mamadyorova’s home. There is no pharmacy servicing her district, she says, and hospital‑issued humanitarian medicines often are unavailable.
When she required daily medication, Mamadyorova waited 20 days for delivery from the hospital. She lodged a complaint with the Ministry of Health and only then did services change.
«From a legal perspective this is discrimination — a hospital should deliver prescriptions free of charge to a first‑category disabled person,» she insists. Despite the law, she often pays thousands of somonis monthly for medicines that should be free. In one case, a doctor issued just 150 somonis worth of drugs out of his own pocket after her mother repeatedly petitioned for help.
Public transport excludes her
Last year Mamadyorova acquired an electric wheelchair — an immediate improvement in independence. But the journey from home to city remains a struggle. She must travel 2–3 km down a steep mountain road to board the only functioning minibus line, № 26. Boarding often requires four helpers.
She rules that drivers of route № 26 often refuse to take her, claiming she blocks space for other passengers. On one occasion, she sat under the sun for an hour after all minibuses refused to take her. She posted photos of idle minibuses and reached the bus stop at Chorbogh by wheelchair. She posted a video appeal. Within days the footage had more than 280 000 views, and the director of the route called her asking her not to post further.
Last January, a driver shouted at her and a controller joined in. She notified the police; the driver was punished with a week’s unpaid leave.
«Why should I stay at home? I also want to get things done, meet friends,» she says.
Capital city lacking for wheelchair users
The capital, Dushanbe, offers virtually no accessible infrastructure, she says. Sidewalks end at curbs, pavements are uneven, steps and open drains abound. Wheelchair users must often travel on roadways, risking life and limb. At a bank she must ask a staff member to meet her at street level because steps block the entry.
Only two places in her area — a supermarket and a pizza chain — are accessible to her without help.
Mamadyorova dreams of organizing a one‑day «experience» event in which able‑bodied people use wheelchairs to travel around the city, so they can personally feel the obstacles faced by people with disabilities. She hopes an organization will support the idea.
Why it matters
Mamadyorova’s story is more than one woman’s struggle. It is a microcosm of the barriers thousands of people with disabilities face across Tajikistan, especially outside the major cities. Her advocacy raises questions about access to transport, medicine, education and infrastructure — and about a society’s willingness to accommodate all its members.
For further coverage
Local and international organizations supporting disability rights, law‑makers and transport operators should note the issues she raises: accessibility must move beyond legislation to real‑life implementation.
«As a human rights advocate, I fight so that people with disabilities can live independently, not be under someone’s patronage,» Mamadyorova says. «If we want to, we can do much, despite physical limitations.»
From vaccination to disability
Born in Dushanbe, Mamadyorova moved with her mother to Jangalak after her parents divorced. She grew up as a healthy child, she says, until at age four she was given the DPT (diphtheria‑pertussis‑tetanus) vaccine. Soon after, she experienced high fever and then developed muscle hyper‑tonus and contracting joints. By age five she was diagnosed with cerebral palsy.
Her parents lodged a court case, alleging the vaccine had been administered without their consent — but the investigation was closed after no one was held responsible. More recently, a doctor explained that in children with chronic or genetic conditions such a reaction is possible, Mamadyorova says.
A childhood in an ill‑equipped boarding school
At seven, Mamadyorova attempted to enroll in a mainstream school but was refused. The following year she was placed in a boarding school for children with disabilities in Hisor. She attended only four years. She recalls toilets on raised platforms that wheelchair‑users could not access without climbing stairs and rusty bathrooms fed by a warm saline spring — the only washing facility for the children. Staff neglected many duties, leaving children to help each other.
«When I finished fourth grade and came home, I told my mother I would never go back,» she remembers. The boarding school was theoretically a safe place, she adds, but the reality was far from it — she often fell, was improperly assisted, and the place was not adapted for wheelchair users.
An NGO called Dastgirii Ehtiyojmandon (Helping the Needy) had supported the institution: they built new toilets and bathrooms, but the director barred children from using them. Later the NGO shifted focus and opened its own center for children with disabilities — Mamadyorova was among those selected for this program. After two years of home‑based adaptations she entered mainstream school № 50 and successfully completed it.
Choosing independence
A turning point came when she was challenged by the NGO’s leader to reach a glass of water placed on top of a refrigerator. It took her 45 minutes, but she succeeded — and decided to no longer wait for others.
«About three years ago a girl in a wheelchair lost her mother and then died herself. I did not want such a fate. I thought about what would happen if my mother was gone…» she explains. She urged her mother to seek work so that she would not have to remain dependent. Initially Mamadyorova used a diaper and learning to use the toilet safely took bruises and months of effort.
«Many parents of children with disabilities become disabled themselves in their mindset, hoping for help. The worst feeling is self‑pity — and I left it behind,» she states.
She then found work at an online cosmetics store, and later took a remote job as an accountant: she was trained and given a laptop. She also completed human‑rights training at the invitation of the Organization for Security and Co‑operation in Europe (OSCE) and regularly speaks at events on disability rights.
Medical neglect in a remote settlement
In Jangalak, the only medical help is a local nurse whose district route rarely covers Mamadyorova’s home. There is no pharmacy servicing her district, she says, and hospital‑issued humanitarian medicines often are unavailable.
When she required daily medication, Mamadyorova waited 20 days for delivery from the hospital. She lodged a complaint with the Ministry of Health and only then did services change.
«From a legal perspective this is discrimination — a hospital should deliver prescriptions free of charge to a first‑category disabled person,» she insists. Despite the law, she often pays thousands of somonis monthly for medicines that should be free. In one case, a doctor issued just 150 somonis worth of drugs out of his own pocket after her mother repeatedly petitioned for help.
Public transport excludes her
Last year Mamadyorova acquired an electric wheelchair — an immediate improvement in independence. But the journey from home to city remains a struggle. She must travel 2–3 km down a steep mountain road to board the only functioning minibus line, № 26. Boarding often requires four helpers.
She rules that drivers of route № 26 often refuse to take her, claiming she blocks space for other passengers. On one occasion, she sat under the sun for an hour after all minibuses refused to take her. She posted photos of idle minibuses and reached the bus stop at Chorbogh by wheelchair. She posted a video appeal. Within days the footage had more than 280 000 views, and the director of the route called her asking her not to post further.
Last January, a driver shouted at her and a controller joined in. She notified the police; the driver was punished with a week’s unpaid leave.
«Why should I stay at home? I also want to get things done, meet friends,» she says.
Capital city lacking for wheelchair users
The capital, Dushanbe, offers virtually no accessible infrastructure, she says. Sidewalks end at curbs, pavements are uneven, steps and open drains abound. Wheelchair users must often travel on roadways, risking life and limb. At a bank she must ask a staff member to meet her at street level because steps block the entry.
Only two places in her area — a supermarket and a pizza chain — are accessible to her without help.
Mamadyorova dreams of organizing a one‑day «experience» event in which able‑bodied people use wheelchairs to travel around the city, so they can personally feel the obstacles faced by people with disabilities. She hopes an organization will support the idea.
Why it matters
Mamadyorova’s story is more than one woman’s struggle. It is a microcosm of the barriers thousands of people with disabilities face across Tajikistan, especially outside the major cities. Her advocacy raises questions about access to transport, medicine, education and infrastructure — and about a society’s willingness to accommodate all its members.
For further coverage
Local and international organizations supporting disability rights, law‑makers and transport operators should note the issues she raises: accessibility must move beyond legislation to real‑life implementation.
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