RESEARCH ON SEXUAL LIFE of WOMEN WITH DISABILITES Đỗ Thanh Toàn Nguyễn Hồng Hà

Background Researches have been done on different visible issues, such as rehabilitation, education, employment, vocational training. There have no researches on how people with disabilities (PWDs) live, especially on the very sensitive issue of sexuality of women with disabilities (WWDs), which is an important part of these disadvantaged persons.

Objectives of Research To find out what WWDs think of their sexuality and their dreams To know how much their relatives (husbands, partners, parents…) are aware of sexuality of WWDs

Outcomes Qualitative disability research skills will be improved A reference document on health and sexuality of WWDs will be contributed to the Disability Research Fund The information will be provided to the policy makers, so that their interests go not only on WWDs’ material needs, but also on their needs in this sensitive part of their lives

Outcomes (cont.) Awareness of WWDs on what is related to their sexual lives, helping them to get confident and find opportunities for themselves in life. Awareness of the community on helping PWDs to integrate into the society and take their rights to sexuality and reproduction

Methods Qualitative research method: using in- depth interview and focus-group discussion technique. Interviewees: WWDs aged 18-60; WWDs’ husbands and partners; their parents; and some DPOs’ leaders, health authorities, PWDs’ teachers Based on the agreement; confidentiality in information; consultancy in need

Issues mentioned Concern and education from the family Awareness and point of view of WWDs themselves on their sexual life Point of view of their relatives and community on this issue Opportunities for WWDs to love, sexuality, marriage and their expectations

1.Concern and education from the family Parents take too much care and do things for them, considering the disabled child disadvantaged “…My parents give me more affection than my sister and never let me cook and wash the dishes or do any housework.” (said a young lady with visual impairment, aged 23)

1. Concern and education from the family (cont. ) In the family the WWD is seen as incapable: “It is the family that creates the prejudice on the WWD, who thinks that she is worse than the other child(s) and cannot do what the other children can. As the result the disabled daughter is not asked to do what is simple to any lady: house work or behavior to the others…” (said a 45 year-old disabled man)

Consequence  Parents’ too much care to the disabled child, despite their goodwill, result in an unexpected consequence that he or she has no opportunities to live independently and participate into the everyday life activities of the family

1. Concern and education from the family (cont. ) Parents are interested only on medical rehabilitation for their child, not her emotion and sexual needs -> never think of teaching their daughter knowledge on sexual health and reproduction health WWDs know about that by watching what their mother do “Mum never shared with me the sensitive things about a woman and I never read about that. I just imitated what she did.” (said a 28-year-old woman with cerebral palsy said)

1. Concern and education from the family (cont. ) Parents are more worried about a job for their disabled daughter than her opportunity to be married The parents themselves think that their disabled daughter cannot fulfill the task to be a daughter-in-law, a wife and a mother in the future  The WWD grows up thinking that she is different from the others due to her disability, a serious inferiority complex about fate, which makes her lose her confidence and the belief in her right to love and marriage, as an ordinary woman

What do WWDs think ? They do not expect a special treatment A disabled daughter can do housework like the other non-disabled children: “Becoming adult, I understand that parents’ too much care may harm the kids. As a woman, the disabled daughter should at list know how to cook. I didn’t know how to cook well until I joined the Association of PWDs” (said a young lady in wheelchair)

2. Love and sexual life of WWDs WWDs are much more disadvantaged due to: Their way of thinking that they are worse in appearance: ”Despite your beauty you can not be equal to a nondisabled woman”. (a 54-year-old woman with mobility disability shared)

2. Love and sexual life of WWDs The way they think they have no right to have sex or they have to control it: ”A disabled woman never dares to expect to have a sex. ”It’s a fear of being dispised” (said a 32-year-old WWD). They do not take the chance when it comes thinking that they may cause trouble to their beloved: ”He once wanted to marry me, but I feared that I will be a burden for him” (said a 54- year-old woman with mobility disability)

2. Love and sexual life of WWDs Their lack of knowledge on WWDs’ rights, they tend to accept the destiny thinking that it is self-respect: ”I had a non-disabled boyfriend, but seeing his family’s attitude, I decided to say goodbye to him, since I had a strong self-respect.”. (PVS PNKT vận động, 31 tuổi)

2. Love and sexual life of WWDs (cont.) It was found out that even young women, who have learned a lot about sexuality health and reproductive health, think that WWDs should never show their love and desire and sexuality is just to have children, not one of the element to bring happiness: ”Disabled women shold not show their love and sexuality desire” (said a 23- year-old lady with disability).

3. Opportunities for WWDs in love, sexuality and marriage Almost no choice, due to the discrimination to women and to WWDs : ” People think that a disabled person should not get married, but disabled men have opportunites, since non- disabled women can sacrifice, but it does not happen the same to WWDs.” (said a disabled man, lover of a disabled woman).

3. Opportunities for WWDs in love, sexuality and marriage (cont.) WWDs think too much of their fate to forget that they just have some disability and non-disabled people are not always perfect. Athey are shy and lose their opportunities: ” The WWDs themselves are not active enough” (said a 38-year-old disabled woman)

3. Opportunities for WWDs in love, sexuality and marriage (cont.) To be in love, a disabled woman has to face so many difficulties: barriers from both families and the calculating from her man: ”...Like many other Vietnamese men, I was calculating, thinking that with a non-diabled wife, life would be wonderful to me and I would be able to concentrate on my career, but... I should have married the disabled woman I loved” (said a 38-year-old married man, who is lover of a disabled woman).”

3. Opportunities for WWDs in love, sexuality and marriage (cont.) To be married is a long way to go for a disabled woman. It does not depend on her, but on the understanding from both faminlies and the determination of her man: “If the man have no voice in his family, nothing can happen. So to help a woman with disability to reach a married life, the man must be decisive” (said a disabled woma’s husband, aged 45)

3. Opportunities for WWDs in love, sexuality and marriage (cont.) Young WWDS nowadays have better view on love and sexuality and better awareness on their abilities and dignity: ”Young WWDs have more opportunities to have boyfriends and the society’s point of view is changing grdually, since people can see PWDs work and live independently. (interviewing in-depth with a 30-year-old disabled woman)

3. Opportunities for WWDs in love, sexuality and marriage (cont.) Choices: WWDs who are well-educated and have high income choose the way to live with their partners without getting married Others in their thirties or forties choose the way to be in relation with a man to have a child to rely on when getting old

4. Their expections To be regarded capable in love, wifehood and motherhood : ”Happiness of a WWD is to have rights to education, employment, to be respected, to have a good family with a kind husband and nice children, as an ordinary person” (said a 28-year-old disabled woman). Men can see their value of a woman: ”Awareness raising should be done among men on WWDs’ abilities in love and family life, since many men would rather marry a bad non-disabled woman than a beautiful, gentle and sweet disabled woman” (interviewing in-depth with a 28-year-old disabled woman)

4. Their expections (cont.) To be regarded in their families as an ordinary woman with human desires: ”Parents should not think that their disabled child have no needs for love and sexuality as the other non-disabled women, even more. And sexuality is more important to WWDs” (interviewing in-depth with a 38-year-old disabled, who have a lover, but their parents do not allow, thinking he will soon get tired and leave her)  To make their dreams come true, efforts are needed from not only WWDs, but also from their families, community and the whole society. This help should be material and spiritual.

Recommendations Massive propaganda on rights of WWDs nationally Issues of WWDs should be included in the National Action Plan Awareness raising on abilities of WWDs in studies, at work and in family life, especially in wifehood, motherhood and sexuality

Recommendations (cont.) Organize exchange meetings on love, maffiage and happiness Open courses of cooking, wifehood, and motherhood for WWDs

Thank you!