Role Of Consent In Sterilization Of Disabled Women In India By - Pooja Yadav

Role Of Consent In Sterilization Of Disabled Women In India

Authored By - Pooja Yadav

Abstract

The disability of a woman generally overshadows her sexual rights. Maintaining her menstrual hygiene is considered a tough challenge for her care taker moreover she is considered vulnerable to sexual assault. Society and even the medical fraternity to a great extent support sterilization as the only alternative against embarrassment in such cases. This choice is usually based on best interest theory but unfortunately, the best interest is not of the patient here. In most cases, the victim of this system is a minor or is not mature enough to understand the gravity of the matter. Her consent, her reproductive rights and her best interest are neglected while giving her another disability.

The paper critically analyses socio- legal framework relating to one of the most least discussed topics and tries to find out the reason behind prevailing circumstances while suggesting some desired changes.

Keywords : Hysterectomy, free consent, care giver, coercion

Role of Consent In Sterilization Of Disabled Women In India

Disability is the condition in which a person finds it difficult to perform a task as compared to another human. Disability whether mental or physical opens a plethora of challenges in a person's life. Walking, talking, listening, seeing are some of the activities which a normal human being does without even feeling fortunate for having these abilities but unfortunately performing these all activities freely is the biggest dream of many others who are considered a burden on the caregivers who are generally the members of his or her family. He or she is considered a responsibility which the family has unfortunately got and anyhow have to bear this. Depending on others for their daily life chores creates a feeling of inferiority in the minds of the disabled. His dignity, wish and goals are some topics that are never paid attention but when15% of the world's population[1] is facing the harsh reality of disability and 2-4% of whom experience significant difficulties in functioning, In India according to the National statics office report 2.2% of India's total population live with some kind of mental or physical disability[2]added to the fact that there is a considerable number of unregistered cases of disability in India talking about their lives becomes very necessary.

Being a female with a disability makes the situation worse due to the prevailing discrimination against the half population in the society. The disability of a woman often overshadows her sexuality; it is a myth in society that a woman with a disability is not one suitable to reproduce as she cannot undergo the harsh process of reproduction as a normal woman can. Even if she is suitable to reproduce no one will be ready to marry her hence her femininity is of no use.

Whenever a female with disabilities reaches the age of puberty and the menstrual cycle starts the real challenge is faced as she needs assistance in maintaining her menstrual hygiene which is a tough task for the caretaker. The disabled have to undergo unmatched embarrassment and suffering as many of the disabled are not even toilet trained.

Nearly 80% of women with disability suffer sexual violence in their life which shows they are four times more prone to sexual abuse than other women[3]the sexual abuse which may result in unwanted pregnancy may bring embarrassment to the female and her family.

The only solution to the above mention problems which is prevalent in society is hysterectomy which is a surgery to remove a woman's uterus (also known as the womb). The uterus is where a baby grows when a woman is pregnant. During the surgery, the whole uterus is usually removed. [4]this process stops the menstrual cycle of the woman which is considered to bring convenience for the disabled woman and her caretaker moreover if any sexual abuse such as rape is committed against her there are no chances of unwanted pregnancy these are the reasons why even the medical fraternity supports the practice of hysterectomy in these cases

But unfortunately to hide the symptoms of society’s failure to provide the disabled with a dignified full life she is given another disability which means that she will never be able to reproduce.

Role of Consent in process of hysterectomy

Sunita (name changed) was 19 when she had a severe paralyzing attack which made her permanently wheelchair-bound with rare chances of any improvement. When she started facing difficulty in maintaining her menstrual hygiene the doctor suggested her hysterectomy which she denied because she had a hope of fighting against all the odds and somehow saving her reproductive capacity but 6 months later due to hormonal imbalance her monthly cycle continued for a month without any relief he was rebooked by the family for her decision of not undergoing hysterectomy looking at the difficulties of caregiver and the constant feeling of embarrassment she had to finally choose the path of hysterectomy. This situation must not have been similar if any girl which is not disabled would have faced such hormonal imbalance she reported with tearful eyes.[5]

In the above case and countless similar cases, the consent of the patient is not given due importance while giving her another disability and even if there is consent it is not free consent which means consent free from any kind of mental or physical coercion or any misrepresentation. The consent given in the above case cannot be called free consent of the patient it was the consent of the family that represents the society that was forced upon the patient.

Any patient who opts for continuing her menstrual cycle is considered to be insensitive and is not even concerned about the difficulty her caregiver is facing nor she is mindful of the norms of the society where it is considered shameful to have leakage during periods, the process which is involved in the creation of this world should be kept in curtains according to the well-established norms of the society and disabled finds it difficult to do so, as a result, she is made to scum to the constant torture by the society

The case is worse when we talk about people with mental disabilities and minors with a disability as in both the cases according to the prevailing law the right to make a decision lies with the guardian of the minor or mentally disabled. There are people which are born with a disability plus the menstrual cycle also starts at the age of 12-16 generally when the person is still a minor in many cases the doctor usually suggests sterilization at an early age even when the menstrual cycle has not yet started the age is as less as 4 years in certain cases. In these cases the sole autonomy lies with the guardians and the patient who is undergoing sterilization does not even know what is wrong with her, what changes are made in her body, and what is she losing. The fact cannot be neglected that a disabled person is vulnerable to being treated as a burden and there can be a lack of love and affection and at a later stage the disabled person may have an earnest desire to reproduce to have someone to give her emotional support but how is this possible when the society has already given her another disability.

Contrary to the standard medical procedure

The medical standards favour the best interest theory which states that the best interest of the patient is to be kept in mind while treating a patient but in the cases of forced sterilization of the disabled it is not the best interest of the disabled but of the caregiver who's difficulties and embarrassment is kept in mind at first place while dealing with cases where no free consent of disabled is involved nor she is given any alternative some of which will be discussed in the paper further, for leaving a dignity full life. Due to the circumstances and lack of exposure to the world, lack of comfortable communication with others, and in a situation where the literacy rate of the disabled is only 54.4%[6]there are fair chances that she is not well informed while undergoing such a procedure and there are chances of misleading her.

The laws involved

To provide equality to disabled persons Rights Of Persons with Disability Act, 2016 was passed by the parliament section4(1) of this act states that the state must ensure equality for disabled persons with others which is the same as the essence of article 14 of Indian Constitution taking away their reproductive capacity in violation of this section added to the fact section 25 puts the duty on the state to ensure sexual and reproductive rights to the disabled persons which they are denied in case of forced sterilization section 92(f) provides for punishment in case of force termination of pregnancy which signifies that autonomy should be given to the disabled while dealing with her body.

When it comes to reproductive rights of people with mental disabilities section 95 of the mental health act 2017prohibits sterilization when they are promoted as a treatment for mental disability

In various leading cases such as The Puttaswamy judgment[7] followed by the case of   Suchita Srivastava v Chandigarh Administration[8]right to reproduce has been recognized as a fundamental right under Article 21 of the Indian Constitution which includes the right to choose whether to reproduce or not depriving a disabled of his reproductive capacity is a violation of the right to life under Article 21.

Finding ray of hope

It is a myth that sterilization is the only choice available for ensuring a dignity full life for a disabled first of all the stigma which is related to menstruation in the society needs to be countered to open a free discussion about the problem in the society many societies such a technology can play a great role in fighting against forced sterilization Keela Cup" which is a menstrual cup with adjustable pull string and easy-grip  is a disabled-friendly menstrual cup that is making remarkable changes in the life of many disabled persons "Kahani Har Mahine Ki" is a life-sized demonstrated menstrual kit specially designed for visually impaired women by Vikalp Design and Pearl Academy of Fashion has brought hope to the life of many visually challenged persons. Products like these need to be made easily available to the disabled person to protect their right to reproduce.

Uppermost importance should be paid to the training session for both the disabled and their caretaker to educate them regarding the importance of the menstrual cycle and the best practices while dealing with menstrual hygiene more and more disabled-friendly washrooms should be constructed so that a disabled find herself comfortable and a toilet is easily available whenever she needs. Disable friendly toilets should be encouraged in every public building such as schools, colleges, malls, banks, and courts. Some websites such  as the MS Society, Wuka are specially made for disseminating information among the disabled through various means the awareness regarding these kinds of the website should be increased so that they can reach a larger number it is also important to train the medical fraternity for dealing with disabled patients so that they can encourage caretakers for ensuring reproductive rights to the disabled.

Conclusion

The stereotype that is prevailed in the society relating to menstruation makes a difficult for disabled women to live a dignified life while enjoying their reproductive rights the problem lies in the lack of discussion on the topic which leads to a lack of awareness even in the medical fraternity. As a result, sterilization is seen as the only option for safeguarding the disabled and the caretaker against the possible embarrassment while dealing with menstruation The consent of the patient is not paid due importance, and in cases where there appears a consent the consent is not free as the victim of this system is forced to opt for sterilization due to daily harassment and embarrassment which the society showers. Deciding whether there is free consent in a particular case becomes a challenging job that needs to be done anyhow if we want to guarantee the productive rights of the disabled. Certain laws deal with the topic but no law is useful without proper means of implementation. Unless awareness is created in the society and initiatives are taken to protect the reproductive rights of the disabled these laws will not be of any benefit in the true sense. Menstrual education and training sessions are most important for dealing with this evil prevalent in the society the technology has made a few remarkable changes towards making it easy for disabled persons to deal with menstruation but there is still the scope for more research and development to facilitate the disabled person live a normal life while enjoying the reproductive rights also these products need to be made available to the disabled at an affordable cost as there is a large portion of disabled still living under the poverty line. Encouraging the disabled to take education and creating a disabled-friendly educational Institute will also serve as great support while achieving the goal of a society where every disabled is ensured of a dignified life.

[1]Disability and health, https://www.who.int/news-room/fact-sheets/detail/disability-and-health#:~:text=Over%201%20billion%20people%20are,often%20requiring%20health%20care%20services. ( last visited 1 march 2022)

[2]Explained: How much of India’s population lives with disabilities?    ,https://indianexpress.com/article/explained/explained-how-much-of-indias-population-lives-with-disabilities-7088195/. ( last visited 1 march 2022)

[3] Women With Disabilities And Forced Sterilization In India https://feminisminindia.com/2020/03/12/women-disabilities-forced-sterilization-india/  ( last visited 1 march 2022)

[4]Hysterectomy, https://www.womenshealth.gov/a-z-topics/hysterectomy( last visited 2 may 2022)

[5] Women With Disabilities And Forced Sterilization In Indi https://feminisminindia.com/2020/03/12/women-disabilities-forced-sterilization-india/ ( last visited 1 may 2022)

[6] Census 2011 records rise in literacy among disabled, https://www.thehindu.com/news/national/Census-2011-records-rise-in-literacy-among-disabled/article14491381.ece (last visited 3 3May 2022)

[7]K.S. Puttaswamy and Anr. vs. Union of India ((2017) 10 SCC 1),

[8]Suchita Srivastava v.Chandigarh Administration, (2009) 9 SCC 1