Sunday August 4, 2013
The silenced wombs
By Divya Sreedharan
Does the presence of disability mean the absence of rights? Divya Sreedharan reports on how hysterectomies are often forced on disabled women.
Scroll down for link to the “Draft Disabilities Bill“ and media report “Panel prepares draft to secure rights of people with disabilities”
Farheena was just 10 and a half when she attained puberty. Doctors asked her mother Farida Rizwan to do a hysterectomy on Farheena. To stop her periods. Because Farheena is a special needs child she has cerebral palsy.
“I was told the hysterectomy would help avoid hygiene issues during menstruation,” says Rizwan, who lived in Byndoor, a coastal town in Udupi, Karnataka, at the time. Other parents nearby had removed the uterus of their own young, disabled daughters. Rizwan refused. “I asked doctors about the side effects of such a surgery on someone so young. I never got an answer,” she says.
Farheena is 18 today, lives in Bangalore with her mother and brother, and attends a special needs school. She is active on Facebook, plays on her mother's iPad, and manages her menstrual cycle on her own. “It took a while but I showed her how to use sanitary napkins, made her understand menstruation. She freaked out at first but with time the fear has gone,” says Rizwan.
The 2001 Census says there are 9.3 million disabled women in India. Farheena is one of them. She is luckier than most because her mother fights for her right to live with dignity. India is a signatory to the United Nations Convention on the Rights of Persons with Disabilities 2007, which guarantees all intellectually disabled women “the right to full bodily integrity”. But it is common practice to conduct hysterectomies or sterilisations on mentally challenged girls, both by parents and by state agencies in government-run homes or shelters.
Denying basic rights
According to Shampa Sengupta, Director, Sruti Disability Rights Centre, Kolkata, forcible hysterectomies are a violation of human rights, apart from legal, moral and ethical rights. “It’s a denial of a woman's basic right her right to bear a child”. What happens when girls as young as 9 or 12 are sterilised? There is no specific study in the Indian context but the Hysterectomy Association in the UK lists some of the risks as pelvic inflammatory disease, endometriosis, depression and back pain.
The practice of forced hysterectomies became public in 1994, when they were found being conducted on mentally challenged women between the ages of 18 and 35 at Sassoon General Hospital, Pune. A 1994 article in the British Medical Journal said “...health authorities claim consent was given by the women's parents or other lawful guardians and that the operations were done to maintain the women's hygiene during menstruation...” The same reason was cited in 2008 by the Maharashtra government seeking to conduct hysterectomies on 300-odd women in five government homes.
This, in the face of guidelines laid down in the early 1990s by the Indian Journal of Medical Ethics that recommended setting up a qualified panel to examine the girls. The guidelines stressed that “hysterectomy in the absence of a conscientious effort at helping the woman to maintain personal hygiene cannot be justified”.
What can such panels actually achieve? Says Akhil Paul, Director of Sense International India, an Ahmedabad NGO that works with deaf-blind children and adults: “The panel can only take action if a complaint is made.”
The real picture
But what’s worse is what’s left unspoken. Hysterectomies are often carried out, as Sengupta notes, so that the girl does not become pregnant if abused. It’s a larger conspiracy where parents and society stay silent about the abuse; and about the hysterectomies or abortions after the abuse. Says Paul, “Often, the abusers are people who meet them everyday. Auto drivers, rickshaw wallahs, family and peers.”
Do hysterectomies then merely perpetuate the sexual abuse of the disabled? Last July, a young woman's body was found buried within the compound of the NGO Dulal Smriti Samsad in West Bengal. It was that of Guriya, a mentally-ill destitute woman. The Home, although registered under the Persons with Disabilities Act, the National Trust Act and the Juvenile Justice Act, was not monitored by any agency. Sengupta was one of those who investigated the incident. “Many women had been subjected to routine sexual abuse, some even had Copper-Ts (contraceptive) inserted in their bodies,” she says.
And what happens when the abuser is a family member, a father, sibling, family friend or uncle? “Many doctors speak of carrying out hysterectomies on the request of the girls' mothers. My own gynaecologist has told me of a disabled girl brought in by the mother for an abortion. Some mothers know their daughters are being abused but keep quiet,” Sengupta says.
Farida Rizwan, though, has vowed not to keep quiet. She is fully aware of how vulnerable her daughter is. “One day, Farheena told me her classmate (a girl) had grabbed her breast. Farheena knew this was wrong because I have taught her about 'good' touch and 'bad' touch. But what about the girl who touched her? Someone must be abusing her which is why she touched my daughter inappropriately. Who will help that girl?” she asks. Award-winning blogger Rizwan is vocal on the issue of the rights of the disabled, and one thing she is sure of: “Removing her uterus will not protect my daughter”.
India's Persons with Disabilities Act, 1995 is silent on the subject of violence towards and sexual exploitation of disabled girls and women. Now, a Draft Disabilities Bill is ready. It strongly advocates:
- The right of women and girls with disabilities to be protected from all forms of abuse, violence and exploitation.
- Protection in all settings including homes, care-homes, educational institutions, and workplaces.
- Safe, accessible complaint mechanisms to report abuse, exploitation, and violence
- Setting up gender-, disability- and age-sensitive protection services. And full support for the survivors of abuse.
Source: Sense India
September 29, 2012
Panel prepares draft to secure rights of people with disabilities
NEW DELHI,: Unhappy with the Government’s inability to come up with a holistic legislation for disabled persons, the Disabled Rights Group (DRG) has come up with the draft of a comprehensive law that seeks to provide access to properties, including securing the rights of inheritance of people with disabilities. If required, legal aid may be provided to persons with disabilities, to protect their rights on property.
Based on “all rights of all persons with disabilities with a framework for accountability”, the proposed draft, Rights of Persons with Disabilities Act, 2012, seeks to repeal the existing four laws on disabilities, to avoid multiplicity of authority and duplicity of institutions, Javed Abidi of the Disabled Rights Group, told The Hindu .
The draft puts on the government the responsibility of developing strategies and schemes to help persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. The comprehensive rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, will be available to persons with disabilities in the communities they live, and will extend to the rural areas as well. Products and technology to guarantee participation will comply with the standards and norms, as outlined in the accessibility strategy.
The Persons with Disabilities Act, 1995, the Rehabilitation Council of India Act, 1992, the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999, and the Mental Health Act, 1987, are the four existing laws.
“There is no synchrony between the various legislations that will impact the lives of persons with disability, and complete dissonance between the proposed Rights of Persons with Disabilities Bill and the proposed Mental Health Care Bill brought out by the Ministry of Health & Family Welfare,” DRG told the Union Social Justice and Empowerment Minister, Mukul Wasnik, while presenting the draft on Wednesday.
The government will make sure that persons with disability can, and will, effectively participate in political and public affairs on an equal basis with people, including the right and opportunity for persons with disability to vote and be elected, form and join organisations of persons with disability to represent people with disability at international, national, regional and local levels. Reasonable accommodation shall be provided in all cases where persons with disabilities exercise their right to franchise, the draft suggests.
The appropriate government shall make sure that every person with disability shall be entitled to support in decision-making, which would help the person to exercise legal capacity with safeguards to implement his/her will, the draft says, while saying that the mechanisms for providing support in decision-making shall be developed by the Disability Equality Commission.
A person with disability, who is denied the services, or faces discrimination in accessing any services and the facilities, shall be at liberty to make a complaint before the Grievance Redressal Committee.
In cases where a person with disabilities is of the opinion that he/she is unable to comprehend and/or retain the information that is required to make a decision, support may be sought by that person in arriving at that decision. The person may contact the Disability Support Officer, to seek such support, which will make sure that the person gets support to help him/her to arrive at a decision according to his/her will.
In extreme situations, where it is felt that a person with disabilities is unable to comprehend and/or retain information to make a specific decision, despite all support options being provided, total support for the said decision for a fixed period of time may be provided by the Committee.
There is a provision for the constitution of the ‘Disability Equality Commission’ to develop mechanisms to provide support to persons with disabilities, to live within their own families or independently.
Rights of Persons with Disabilities Act, 2012, seeks to repeal the existing four laws on disabilities
Legal aid may be provided to persons with disabilities to protect their rights on property