Sterilizing disabled women: a convenient solution?

Prejudices surrounding the physically disabled abound, not least society’s view of them as nonsexual beings. Ironically, while the disabled are often barred from sexual education, disabled women are 1.5–10 times more likely than abled women to be sexually abused. What’s more, disabled women are often forcibly sterilized, raising the issue of the degree of “rights” they have concerning their own bodies.
 
 
There are approximately 800,000 physically disabled women in Thailand, many of whose rights have been violated by forced sterilization. Some women are coerced into it with false claims, like “sterilization prevents sexual abuse.” Although these sad stories have repeatedly circulated around Thai society, disabled women and their “rights” continue to be ill-defined and destroyed.
 
Traditionally, abled people’s view of the disabled, and even the disabled’s view of their own self-worth, overlooks the sexual ability of the disabled. Often there are misconstrued beliefs that the disabled have no sexual needs or desires, since sex is intimately intertwined with the notion of embodiment, form, and beauty of the physical body. These beliefs circulate even more strongly around disabled women, whose sexuality is doubly regulated: both a woman and a disabled person in Thai society.
 
“After I started using a wheelchair, I had no more opportunities to continue my secondary school education, since the school did not accommodate disabled students. My already meagre sexual education knowledge soon dwindled to zero. What’s more, after I started staying home, the chances of me meeting a nice guy or friends of the opposite sex diminished significantly. I became cut off from the world of youthful sexual relations.”
 
These deeply-rooted ideologies towards the disabled and sex in Thai society lead to disabled women choosing to inhabit a solitary world framed by rules, exceptions, and family. 
 

Society takes one view, the disabled comply

 
The most visible, obvious problem for the disabled is access: not surprisingly, disability rights groups focus on the issue of elevators and other facilities for the disabled to the point that one signifies the other. However, the issue closest to the disabled’s body, that of sex, is often ignored.
 
Many people unknowingly think of the disabled as a nonsexual group of people. Research has shown that the disabled are often overlooked from their sexual/gender differences of man, woman, or LGBT because they are “blocked” from visibility by disability.
 
Society has the attitude that the disabled are different in kind. The physically disabled are often viewed as being devoid of sexual feelings or needs, especially if their body is deformed or incomplete. Disfigured bodies are viewed as shameful things that should be hidden from the public eye. These social views prompt many disabled people, especially young women, to hide themselves away from society because they do not believe that they can find love or raise families with their bodies.
 
“After I started using a wheelchair, I had no more opportunities to continue my secondary school education, since the school did not accommodate disabled students. My already meagre sexual education knowledge soon dwindled to zero. What’s more, after I started staying home, the chances of me meeting a nice guy or friends of the opposite sex diminished significantly. I became cut off from the world of youthful sexual relations. My relatives also discouraged me from having a boyfriend. They told me that a relationship would end with me being taken advantage of and having my heartbroken because there was no way for me to help or defend myself,” said a physically disabled woman.
 
Society discriminates against disabled women in the sexual sphere, assuming that sexually inexperienced, disabled women who have never had a relationship before will throw themselves into their first relationship, resulting in disappointment, being taken advantage of, and an ultimately unsuccessful relationship. As a result, the women feel even more unwanted by society, and society reaffirms their view that disabled people should not fall in love or have any sexual relations. Even if she is lucky enough to find someone to love, settle down with, and have children with, physically disabled women are still assumed to be unfit mothers. 
 
Alison Lapper Pregnant is a statue of Alison Lapper, an English artist with no arms and short legs, sculpted as a symbol of physically disabled women’s fight to overcome bodily restrictions. The statue is located in London. Photo by Michael Hirst (CC BY-NC-ND 2.0)
 
 
Because of these prejudices against physically disabled women bearing children, officials and public health officers ignore and refuse to communicate directly with these women, depriving them the chance to become a mother.
 
“Many times when I go to the hospital alone, the nurse asks me ‘Where are your relatives? Please go find them.’ Sometimes, they don’t even let me sign documents or explain my symptoms until I am accompanied by a relative. When I go with a relative, doctors and nurses speak directly to them instead of asking me about my own symptoms. This happens so much that I feel ignored. I don’t understand why, in their eyes, I don’t exist as a person,” said another physically disabled woman.
 

The disabled are “sexually vulnerable”

 
Since society views the disabled as nonsexual beings, the disabled are also sexually vulnerable—a disgusting twist of irony. Research has shown that disabled women are 1.5–10 times more likely than abled women to be sexually abused. This affects not just women with mobility disabilities who are unable to help themselves. Nattaya Boonpakdee, the head of Thailand’s United Nations Population Fund (UNFPA), told Prachatai that those with hearing disabilities are the main victims of sexually abuse, because of the difficulty in communicating their abuse through sign language to an interpreter. Many times, the disabled find it too harrowing and shameful to convey their testimony to an interpreter, which creates another barrier for communicating with doctors, police, and prosecution officials. 
 
Sexual abuse and rape of the disabled is an exertion of power that assumes that the disabled are weak and defenceless. Therefore, sexual abusers of the disabled feel that a disabled victim meets their needs more than an abled person who can defend themselves.
 
Of course, education is an important factor in making the disabled less sexually vulnerable. Research shows that only 20% of disabled children enter the school system. However, not even this 20% are able to receive sexual education that is adequate to their different disabilities. For example, visually disabled children and physically disabled children need different, specialized sexual education that they can use in their everyday lives. It is a challenge for teachers who are only equipped with sexual education curriculums for “normal” children to provide appropriate sexual education for disabled students that includes defence against sexual abuse.
 

Never talking about the birds and the bees

 
Due to the awkwardness and lack of information surrounding sexual education for the disabled, most parents of disabled daughters decide to shield their child from all sexual knowledge and relationships, preferring to keep them at home. These parents do not tell their daughters about sex, STD protection, or even reproduction. Families, fearing that their disabled daughters will be vulnerable if forced to face the world alone, try to prevent any possibility that they will be sexually abused, even seeking medical aid for this end.
 
“The disabled are weak and defenceless. Therefore, sexual abusers of the disabled feel that a disabled victim meets their needs more than an abled person who can defend themselves.”
 
Saengplern Jarusarn, mother of three, started working in disability care after her youngest daughter was diagnosed with autism and an abnormally small brain. Her daughter is completely unable to care for herself. As her daughter grew, the issue of sterilization came up.
 
“When I found out my daughter was abnormal, my world was turned upside down. My life became a series of trips with my child in and out of hospitals and training her development. When she became a teenager, doctors and psychologists continually gave me advice on her sexual development. They were largely concerned about her hygiene and emotional state,” the mother told Prachatai. 
 
Saengplern had been confident that she could take care of her daughter’s hygiene, but her daughter’s periods brought on violent mood swings. Her daughter was so angry and uncomfortable with having to wear sanitary pads that she would tug, scratch, even pull out the whole pad altogether. Saengplern had to put adult diapers on her child instead. Seeing that her daughter’s periods only brought on stress and negative results, the family decided to consult a doctor on Hysterectomy [cutting the uterus] in order to halt her daughter’s periods. 
 
In fact, disabled women are often sterilized, maybe even more often than they are sexually abused. It is a sad reality that many women with hearing disabilities have been unwittingly sterilized against their will in their teens, due to difficulties in communication and a lack of sexual terms in sign language. When these women enter adulthood and are ready to build a family, they realize with horror that their inability to conceive is due to an earlier forced sterilization. 
 
Nattaya, head of the Thai UNFPA, said that sterilization of the disabled is common because of concerns about pregnancy and sexual abuse. However, she said, sterilization does not deter sexual abuse. In fact, their inability to get pregnant may even spur repeated abuse.
 
In Thailand, caretakers of the disabled often make their decisions for them, especially if the disabled are unable to make important decisions or are legally classified as incompetent. Often, caretakers will make decisions to make care of the disabled as easy as possible, focusing on support rather than rights.
 
How do we draw the line at violating the disabled’s rights? — What rights do the disabled have?
 
The UN Convention on the Rights of Persons with Disabilities (CRPD) clearly states the state’s mission in helping provide the disabled with healthcare services, including those concerning reproductive and sexual health. The disabled are also given the right to freely make decisions concerning their own health. But discrimination still regularly occurs in the form of medical procedures without consent, such as forced sterilization or forced abortions.
 
“Sterilization of the disabled is common because of concerns about pregnancy and sexual abuse. However, she said, sterilization does not deter sexual abuse of the disabled. In fact, their inability to get pregnant may even spur repeated abuse.”
 
Many physicians advise disabled patients to undergo sterilization without complete information about the procedure and its effects, pushing the disabled or their guardians to agree, with or without consent. Of course, this is a violation of the rights of the disabled. Even if a disabled patient does not have the mental capacity to make this decision, this still does not give others the right to decide for them, especially if the disabled is a woman. This is because sterilization by tubal ligation is major surgery involving anaesthesia and open wounds and may be fatal.
 
Nevertheless, Jittima Panutecha, Director of the Women’s Health Advocacy Foundation, told Prachatai that first we have to understand that family members of the disabled are as hurt by social censure as the disabled themselves and recognize the feelings that result. Therefore, the families’ decision to solve the problem through sterilization isn’t a question of right or wrong, she says. If the parents have done something to risk violating the rights of their disabled child, the important thing is not to place blame, but to intervene by providing knowledge and options for a solution. Consent from the disabled themselves is the central tenet to respecting the rights to their own body. Still, disabled people do not often exist independently from society and their families, so it is important to work together with them, especially the caretakers.
 
“The person who has the right to decide should be the disabled person themselves. However, if they are unable to make the decision, there should be a process in place to make them understand what is going to be done to their body. So if you ask me whether it’s right or wrong to sterilize the disabled, I can’t answer that. To decide any case, we must see how much information the parents and the physicians provided to the disabled person, and whether they were involved in the decision-making process. If that was the case, then the sterilization can be done. If not, then the rights of the disabled have definitely been violated,” explains Jittima.
 
Furthermore, disability pregnancy is still a hotly debated issue. Many people, including the disabled, assume that if a disabled person has a child, their child will have the same disability. Disabled people who have not entered the public health systems relating to reproductive health assume that their disabilities will be inherited, or even that they are sterile. By the time that many disabled people realize that they are able to have children, it is too late.
 
“We have no right to prevent disabled people from having children if they fully accept that they will have disabled children. However, they have to know the challenges of caring for a disabled child while disabled themselves. We have to present these parents with the necessary information so they can make an informed decision. Some people decide to have children even though they know full well that they will pass on their disability. Still, it is their right to do so, even if others around them disapprove,” said Jittima. 
 
“The person who has the right to decide should be the disabled person themselves. However, if they are unable to make the decision, there should be a process in place to make them understand what is going to be done to their body. So if you ask me whether it’s right or wrong to sterilize the disabled, I can’t answer that.”
 

Sterilization: the final answer?

 
Finally, we still cannot say whether sterilization of the disabled is ethically right or wrong. In some contexts, sterilization seems to be the easiest way to solve a problem, even if it may violate the rights of the disabled woman. Saengplern added that the medical, utilitarian viewpoint is detached from personal ties with the patient or caretaker. The most efficient, pragmatic solution taught in medical school is used, and these same “patterns” are used on different patients to “solve problems”—not just through sterilization, but with other methods such as making a hole in the throat for breathing or in the stomach to insert a feeding tube. In actuality, of course, using these “patterns” do not yield exclusively positive results.
 
A good illustration is Cerebral Palsy (CP), a condition where the muscles in the limbs and face are weak and may spasm, causing the person to have difficulty speaking clearly. However, CP does not affect the brain or cognitive development, so with adequate and regular treatment and training, those with CP can live full lives, just like any other person. 
 
The BBC documentary “We Won’t Drop the Baby” follows a British couple with CP, Adele and Laurence Clark, from the pregnancy with their second son until his birth. The family faces many challenges and must work to overcome them.
 
In the documentary, Adele is hoping to give a natural birth to her second child after having a C-section to deliver her first, because she wants to feel the pain that most mothers feel. However, due to her CP, the muscles in her bottom half are weak, eliminating the possibility of a natural birth. 
 
The couple also tell of the specific challenges that face them as disabled parents. For example, when the family do everyday activities such as going to the mall, people gaze at them with curiosity and suspicion, even coming up to ask the parents how they are able to handle raising their children. 
 
However, Adele stands firm, saying that her decision to have children is entirely her right. She even says that if her child ends up having CP like her and Laurence, then that child will be the happiest disabled child in the world, because she or he will have parents that understand what it’s like to have that disability.
 
Having CP in Thailand, however, is a very different story. Teenagers with CP are often pressured into sterilization, since the abnormality of the disability is very visible and those who have not been trained to develop communication skills have difficulty communicating. 
 
“If her child ends up having CP like her and Laurence, then that child will be the happiest disabled child in the world, because she or he will have parents that understand what it’s like to have that disability.”
 
Saengplern added that many disabled women decide to undergo temporary sterilization in order to halt their periods, such as by taking birth control pills or wearing an intrauterine device. However, this method needs continued upkeep and has long-term costs, making it unpopular. The process of taking a disabled person, especially one classified as incompetent or with brain problems, to hospital every month or year to be sedated and treated for birth control is almost an impossible hassle.
 
Of course, that is a small hassle compared to seeing many disabled people unable to have the children they want due to forced sterilization.
 
As we can see, sexual issues for the disabled are complicated, even contradictory. The families and caretakers of the disabled are the main factors in determining the quality of life of the disabled person. Changing the social stigma against the disabled (such as the one that assumes they are nonsexual) will require the time and cooperation of many organizations and parties, especially on the issues of sex, emotions, feelings, sexual intercourse, and body.
 
The article was first published in Thai on Prachatai and translated into Thai by Asaree Thaitrakulpanich.