Lena

I met Lena at the open market in Ulgii in western Mongolia one afternoon. Zoya (my interpreter) and I approached her after we noticed her pronounced limp and needed a walking stick. Lena is a quiet retiring person by nature and it was two years before she felt able to fully confide her story in me.

1
Lena.
2. Lena, her husband Batory and their son Oralbek.
Lena, her husband Batory and their son Oralbek.
Oralbek walking towards his home on the outskirts of Ulgii, western Mongolia.
Oralbek walking towards his home on the outskirts of Ulgii, western Mongolia.

She lives with her husband Batory live in a small adobe house on the outskirts of Ulgii, a large town with a population of 28,000 people. Her brother lives nearby and they have relatives in villages in ‘the countryside’. She and her Batory wanted a family but during late pregnancy she experienced pre-eclampsia and lost her first two children and almost her own life. Lena has serious health problems. She has high blood pressure, one kidney smaller than the other and experiences a degree of kidney failure causing toxins to build up in her body. She has some liver failure, experiences bradycardia (a slow heartbeat causing dizziness and fatigue), and significant rheumatoid arthritis. She had an operation on her throat and as a result has a soft gentle voice which is getting quieter. Life was hard but she never gave up hope despite her problems.

Lena and Batory have friends who visit regularly to both help them and receive help. Their house is cosy and friends and strangers are always made welcome. They have a small shop in one room where locals buy small necessities because they need items but also, I believe, to support the family. They make a small yet strong family unit. Traditional male/female roles are not followed. Batory works hard washing clothes, cleaning the house, making bread, and bringing in money from a mix of jobs, whilst Lena does what her frail body and strong mind allow her.

At home: Lena and Batory and guests.
At home: Lena and Batory and guests.
Lena, Oralbek, and a friendly neighbour and child.
Lena, Oralbek, and a friendly neighbour and child.
Lena showing her traditional Kazakh needlework skills. She is unable to undertake such work now due to her rheumatoid arthritis.
Lena showing her traditional Kazakh needlework skills. She is unable to undertake such work now due to her rheumatoid arthritis.
Batory making bread for the family.
Batory making bread for the family.

Most humans have an inherent quality that is optimistic and looks towards a bright future. Bringing a child into the world is an affirmation of this fundamental human trait. After losing two children at birth Lena’s doctors, her relatives and her friends, all told her that she could have a good life with her husband and without children. Lena and Batory disagreed with them and against all advice tried again. Lena wanted a child even though she would endanger her own life. On the third attempt they succeeded and now have a strong healthy 13 year old son.

Lena can’t walk far. Here she is walking with the support of Oralbek. Not easy terrain to navigate.
Lena can’t walk far. Here she is walking with the support of Oralbek. Not easy terrain to navigate.
Lena and Oralbek.
Lena and Oralbek.

The photograph ‘Lena and Oralbek’ is a clear statement that people with disabilities can, and often do, make wonderful parents. The shadows just behind Lena are symbolic of her parents and of generations past encouraging her to move forward into the future.

Throughout recent history there has been an assumption that people with disabilities should not be treated equally. The first half of the 20th century in western civilisations were plagued by the belief in negative eugenics, which resulted in legislation permitting involuntary sterilization. This legislative trend was premised on the belief that people with disabilities and other ‘socially inadequate’ populations would produce offspring who would be burdensome to society. Despite this harrowing history, still perpetuated by some, many people with disabilities choose to become parents. Discrimination against parents with disabilities remains an obstacle to full equality.

Their love for their son is omnipresent. They are supportive, patient, understanding, and listen to his needs yet set limits and rules and don’t indulge him. They are teaching their child how to live life well and to the fullest.