GUWAHATI: For 12-year-old Jimoni Nath, the makeshift bamboo grab bars in her courtyard spells happiness and freedom. Built near the entrance of her house, the bars support her when she is on her own. She enjoys holding on to the bar and walking from one end to the other. Otherwise, she is confined to the wheelchair. Resident of Bamunjhar village in Sipajhar in Assam’s Darrang district, Jimoni is the second child of Gangaram Nath and Taru Nath. Jimoni’s father is a daily-wage labourer. She had been diagnosed with cerebral palsy with left-side hemiplegia.

Her face lights up when she sees Chitra Dasgupta, a faculty member of Shishu Sarothi, a centre for rehabilitation and training for multiple disabilities. Lovingly known as Chitra baideo (elder sister), Dasgupta has been trying to make life accessible for differently-abled children in several parts of Assam. Most importantly, Dasgupta and her team have been trying to innovate with existing materials and create accessible toilets for these children and also provide them toilet training, so that they become independent in their later life.

Dasgupta says, “She is dependent on her mother. But I have been reiterating to her mother that she should ensure that her daughter is independent. She understands what is relevant for her. We had designed an accessible toilet for her from the bamboo plantation in her backyard. We made a bamboo chair toilet with bamboo bars for support which has made her life much easier.”

Many people grow up defecating outdoors or using squatting toilets that require sitting down, getting up and maintaining a squat posture during defecation. Those with polio prefer to use Indian squatting toilets, especially in rural areas. They do not use wheelchairs as they live in homes having narrow doorways, unpaved external environment and many of them cannot afford wheelchairs. Consequently, they crawl around and inside the home/public spaces and use tricycle outside.

Rishamoni Ahmed is a vibrant young girl. She is going to be 18 now. But her mother and her father, who is a school teacher, are worried about her future. She has been diagnosed with infantile hemiplegia. Her walking had been affected and she lived in constant fear of losing her balance while standing. Her impairment led to difficulty in living independently and doing routine activities. She attended Shishu Sarothi’s Creating Equal Opportunity Environment for Children with Disability (CEOECD), a community based rehabilitation project of Shishu Sarothi, in partnership with CRY (Child Rights and You).

“After having visited the CEOECD clinic for one and a half years, Rishimoni can not only walk independently, but can also climb stairs and do almost all her daily activities independently. This has given a boost to her confidence and her parents, who were earlier very protective, have gradually begun allowing her to do tasks on her own, including taking care of her personal hygiene,” adds Dasgupta.

This outreach project was started in September, 2011 and is operating in nine villages in Darrang district of Assam The project covers within its ambit activities to promote various aspects of survival, development, protection and participation rights of children with disabilities.

Arman Ali, Executive Director, Shishu Sarothi explains that the project had early intervention services and home management given by a team of speech therapists, physiotherapists and special educators reaching out to over 127 children with disabilities till date. Children with disabilities from neighbouring blocks and Mangaldoi town in Darrang district as well as some children from Udalguri district also visited the early intervention clinic as the same is the nearest such facility available for them;

“It is seen that people with physical, cognitive or mental impairments tend to face multiple barriers in accessing water and sanitation facilities. The barriers include environmental or technical challenges with the physical setting of the WASH facilities. We also laid stress on access to clean drinking water and toilets at home and public,” adds Ali.

Globally 700 million people live without access to safe water and 2.5 billion people lack access to improved sanitation (JMP, 2014). Despite the immensity of this problem there is evidence to suggest that individuals living with a disability, aged over 60 or suffering from chronic illnesses are at a disproportionately greater risk of not having adequate access to water and sanitation facilities (Human rights of older persons, 2011 & World Report on Disability, 2011).

Access to safe and clean water and sanitation facilities is a basic right of all people, including people with disabilities, the denial of which can have serious implications on their well-being. For example, inaccessible toilet and water facilities are major contributing factors for school dropout among children with disabilities, especially girls. The access to clean water and basic sanitation is a right also guaranteed under the UN Convention on the Rights of Persons with Disabilities.

The Convention reaffirms that persons with disabilities are not viewed as “objects” of charity, but rather as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.
The Govt. of India ratified the Convention in October 2007 and has since then initiated the process of amending and formulating new laws in place of earlier disability laws.

Article 28 in the Convention on the Rights of Persons with Disabilities focuses on the right of persons with disabilities “to an adequate standard of living for themselves and their families; this includes State Parties duty to ensure equal access to clean water services”. The WASH rights of Persons with Disabilities (PwDs) have been recognized under the Persons with Disabilities Act, 1995; Government of India circular on sanitation access for PwDs, the Right to Education (RTE) Act and Sarva Siksha Abhiyan, also promote accessible toilets for children with disabilities in the schools.

UNICEF aims to meet the basic needs, increase self-reliance of individuals, and provide opportunities for persons with disabilities to contribute to the family and community. This can be done by having a clear understanding of the disabilities within the target population, inclusion of the specific needs of people with disabilities in access and use of WASH facilities and services, advocacy and support to policy development and capacity building of WASH professionals in recognizing and responding to the specific needs of people with disabilities.

Tahseen Alam from UNICEF Assam says, “It is important to address issues of self-reliance and dignity for people with disabilities to access suitable WASH facilities and services “We need to pay specific attention to disability in WASH in schools programmes effective implementation seeks to remove barriers by promoting inclusive design. Toilets and washstands, for example, need to be customised to meet the wide range of needs of children with disabilities.” UNICEF has supported the Ministry of Human Resources Development (MoHRD) in developing accessible toilets for boys and girls in schools.

UNICEF also lays stress on disabilities in developing/designing WASH interventions at household level, and for institutions/schools/hospitals. There are fewer toilets for women than men in public places, educational institutions and workplaces, which pose health and safety threats for girls and women in general and more so for those with disabilities.

Girls and women with disabilities in rural and semi-urban areas are bodily lifted by their family members and transferred with soiled clothes which further aggravates health hazards. “Situation gets worse during menstruation cycle and there is no safe and dignified means for menstruation hygiene management for them,” adds Dasgupta.

Institutional barriers tend to overlook the needs of disabled people or prevent their participation in WASH related activities, design and delivery. The Deputy Commissioner’s office in Guwahati took steps to make it accessible for the differently-abled. Dr M Angamuthu, Deputy Commissioner, Kamrup (Metro) said, “Every public building must be made accessible for the disabled. And institutions should conduct access audits to identify lacunae and do the level best to rectify the same.” Meanwhile, the Public Health Engineering Department is taking efforts to make all their Community Sanitary Complexes disabled friendly. Jolly Changmai Kalita, District Water and Sanitation Consultant, Kamrup (Metro) says, “We are looking into special designs to make toilets for the differently-abled in the community centres.” While the Swacch Bharat Mission (Gramin) guidelines have included Persons with Disabilities under its mandate, there is a need for operational guidelines to help implementers to understand and address this issue.

Accessible toilets need larger floor space than other cubicles to allow space for a wheelchair to maneuver. This space is also useful for people who are not necessarily wheelchair users, but need physical support from someone else. A wheelchair-height changing table is also recommended as it would help a caretaker change an older child or an adult with a disability. Under a universal design approach, this should also incorporate features for menstruation hygiene. Compliance with standards of accessibility may require going beyond the basic standard design. Making public infrastructure accessible can cost less than one percent of total construction costs, if accessibility is planned from the outset. And only thing needed is some sensitivity and thought!

(This story is a part of the Sanitation Scribes Project. Teresa Rehman is the Managing Editor of The Thumb Print)