Meet Ruchita Sahukari: 22-Year-Old With Osteogenesis Imperfecta Fighting To Make Education Accessible To All

Ruchita Sahukari, who had a difficult time during her school years because of her condition, has started a petition to ensure no child has to compromise on education due to physical disabilities.

Ruchita Sahukari has all her life battled a rare disease called Osteogenesis imperfecta. She wants all children with special needs to be physically independent.

Source : ABP Live (With Special Arrangement)

Ruchita Sahukari has all her life battled a rare disease called Osteogenesis imperfecta. The condition leaves a person with fragile bones that break easily. After a troubled childhood due to her disability, which made schooling difficult, Ruchita now has one mission in life — to ensure no child misses out on education due to physical disabilities.

Ruchita's studies were compromised while growing up because none of the schools that she tried to take admission in were willing to admit students with special needs.

Ruchita, who recently turned 22, has started a petition on change.org urging the government to make schools and colleges inclusive for all. She wants to ensure that no child ever has to compromise on education due to their physical disabilities. 

What Is Osteogenesis Imperfecta? How Does It Affect A Person?

Osteogenesis imperfecta is an inherited or a genetic bone disorder that is present at birth, and is also known as brittle bone disease. 

A child suffering from this condition may have soft bones that break or fracture easily, bones that are not formed normally, and other problems. The symptoms of Osteogenesis imperfecta include easily broken bones, bone deformities, discoloration of the white region of the eye, a barrel-shaped chest, a curved spine, a triangle-shaped face, loose joints, muscle weakness, skin that easily bruises, hearing loss in early adulthood, and soft, discoloured teeth, among others. 

According to Johns Hopkins Medicine, complications may affect most body systems in a child with Osteogenesis imperfecta. The complications may include respiratory infections such as pneumonia, heart problems such as poor heart valve function, kidney stones, joint problems, hearing loss, and eye conditions and vision loss. Due to her condition, Ruchita's eyes are discoloured. She has blue sclera and eyesight problems. 

Her petition titled 'Schools and colleges that don't become fully inclusive should be derecognized' is addressed to Dr Virendra Kumar, Union Minister of Social Justice and Empowerment, and Dr Dharmendra Pradhan, Union Minister of Education. Through her petition, she is urging the government to make classrooms on the ground floor of school and college buildings, introduce elevators, and set up ramps and disable-friendly access points for water and washrooms. 

Ruchita’s Struggles While Growing Up

Ruchita could not study in a school because all the schools she approached refused to take her in due to her condition. "I took NGO support to move ahead in my career," Ruchita told ABP Live. 

Born in 2000, in Srikakulam district of Palasa in Andhra Pradesh, Ruchita underwent treatment for Osteogenesis imperfecta at AIIMS, New Delhi, from 2001 to 2005. Every time her bones fractured, her parents had to rush her to the hospital. Later on, her parents could not take her to the hospital every time her bones broke, because of financial constraints. Therefore, they started bandaging her at home. She said many people in her hometown considered her a "burden" to her parents. 

Ruchita Is Dependent On NGOs For Her Education

Ruchita received most of her primary education through home tuition. In 2019, she approached an NGO called Amritavarshini. Based in Kerala, the NGO made Ruchita aware of distance education. The same year, in the month of June, she wrote a Bachelor's Preparatory Programme (BPP) examination. This programme is offered by the Indira Gandhi National Open University (IGNOU) to those students who wish to take admission in an undergraduate course from IGNOU but do not have the essential qualification of having passed 10+2. "The programme is equivalent to 10+2. It takes six months to complete the course. I enrolled myself in the programme in June 2019, and passed the examination after six months. In June 2020, I joined a Bachelor's course under IGNOU," Ruchita said. 

She is currently pursuing a Bachelor of Arts degree in Literature and Sociology from IGNOU, and is in second year. "I need to write my exams at a study centre in Odisha because there is no study centre in my town," she said.

What Does Ruchita Aim To Achieve Through Her Petition?

Ruchita believes that everyone should have the right to education no matter their condition, and this is what motivated her to start the petition. "I hope that schools and colleges will become accessible to all and I want them to become aware that education is a basic fundamental right for everyone. My only purpose is to make education accessible to all," she said.

Ruchita added that in India, many parents are not aware of how to handle a child with special needs, and hopes that her petition will help raise awareness. She said that due to her condition, she could neither enjoy a social life nor go to school. Her aim is to ensure that no other child suffers the same fate as her. 

"I expect to bring a change in society, and the first step will be from schools and colleges. They must become aware of disabilities and accept people with special needs. They should be accessible to all, and have elevators and ramps," Ruchita further said.

She also wants the government to introduce more laws for children with special needs, and derecognise the schools and colleges that do not accept disabled children. 

Fortunately, Ruchita's condition has improved since 2018. She wants all children with special needs to be physically independent. "My dream is to achieve physical and financial independence in future," she said.