By Maryanne Waweru-Wanyama
Many are the times that Susan has come across people who have, with some astonishment, blatantly asked her, “You mean even people like you have sex?” Such questions have come from her friends, relatives and strangers alike, and her reaction is almost always the same – one of consternation and bemusement at her sexuality.
You see, Susan, 25, has a physical disability. “Even though hurtful, I have learnt to live with society’s ignorance towards people like me,” she says.
One of the common societal attitudes towards people with disability is that they are asexual; that they do not have sexual relationships. Ignorance fuels these attitudes, where engaging in sexual intercourse does not seem acceptable – at least according to society.
Phitalis Were Masakhwe, a disability rights activist says the idea that people with disabilities do not engage in intimate relationships is the norm in society.
“People with disability are constantly portrayed as incapable of having sexual feelings. Yet, they are normal human beings who also seek meaningful relationships with members of the opposite sex. Just because one has a disability does not mean a diminished need to experience love and affection,” he says.
Often, sex is associated with physical fitness and the virility of youth. And with the media awash with the perfect body image, sex is also associated with the perfect physical body – one with a balanced symmetry devoid of physical limitations. Many people with disability, and especially women endure constant internal battles with the ideal body type, knowing only too well that they may never achieve it. For many, this affects their self-esteem and their relationships with other people, especially those of the opposite sex.
Susan says that society is fed on unrealistic images through the media – where boy meets a perfectly flawless beautiful girl, and they instantly fall in love.
“The sex which then follows is always mind-blowing. Physical attraction is always the dominant theme, and I am yet to see a soap opera that has the lead character as a person with disability. When cast in a programme, they are often portrayed negatively,” she says.
Besides the perfect body image, people with disability have a myriad of other issues to deal with, all of which can affect their sexual functioning. These include feelings of anxiety, fear and depression. Other times, certain prescribed medications may affect sex drive and sexual function.
For those with physical disabilities and whose mobility is aided by wheelchairs or crutches, their ability to move in what can be considered standard sexual ways is limited. Some have to contend with among others; pain and loss of sensation in areas where their partners expect them to be sensitive, as well as impaired bowel and bladder control. In men, it can have an effect on their erection and ejaculation.
For many people with disability, sex is not as spontaneous or as frequent as that of their able-bodied counterparts. Many times, it has to be a planned activity where issues of physical location and fatigue have to be considered. In some cases, the use of assistive devices to achieve pleasure is required.
“It takes a lot of effort and courage to explain some of these things to a sexual partner, especially one without disability,” says Susan. “That is why we prefer to date our kind most of the time – someone with a disability because they understand these things.”
Susan says that even though she gets attracted to people without disability, it is the fear of rejection that makes her stay away.
Even worse is the fact that some members of society consider it ‘embarrassing’ to date someone with a disability.
“Many men have sex with women with disability under the cover of darkness. They have intercourse with them at night but during the day, shun them. This accounts for the high number of women with disability who are single mothers. Often, their children have been sired by different men,” says Masakhwe.
Such a man, Masakhwe says, fears the likely ridicule he will receive from his family and friends, who will question his selection of a wife and tease him for his ‘unsuitable’ choice. “Such is the shame of our society”, he says.
In some communities, people with disabilities are often sterilized against their knowledge or will. Some women have even been forced to undergo abortions in the anticipated disgrace the pregnancy will bring to the family.
“It is this kind of prejudice that makes people with disability fear seeking health information,” Masakhwe says. “Even though sexually active, most lack confidence enough to seek information and services on ‘private matters’ such as reproductive health, even when this information is life-saving for them.
Caroline Agwanda, the proprietor of Hyacinth Ornament Production Enterprise (HOPE) in Kisumu, and who has a physical disability concurs with Masakhwe and further decries the reaction pregnant women with disability receive from society.
“Many express their sympathy at your pregnancy. They tell you ‘pole’ and question the morals of the man who ‘dared’ impregnate you. ‘What was he thinking? Why didn’t he look for another woman if he really wanted to have sex?’ they ask, while shaking their heads in disgust.
But it does not end there, Agwanda adds. “Woe unto you when society discovers that such a woman did indeed plan for the pregnancy,” says the mother of one.
“When I was expectant, many people asked me why I wanted to bring yet another disabled person into society. For them, it was automatic that I would give birth to a child with a bad leg like mine, and wondered what kind of a person I was to want to do so.”
Agwanda says that society’s ignorance on disability issues further manifested itself after she delivered. “After I got my baby girl, I was excited by the huge number of people who came to see me and my baby. However, I was to later discover that most were merely coming to ‘confirm’ that my child had been born with a bad leg too. This greatly saddened me.”
Too often, women with disabilities are teased, humiliated or otherwise harassed by peers and healthcare workers should they decide to become pregnant, decreasing the likelihood they will receive appropriate reproductive healthcare.
“Many are the times a clinician will ask a pregnant woman with disability; ‘Who got you pregnant? Why were you having sex in the first place?’ Even worse is that they ask this out loud along the hospital corridors, something that is really embarrassing,” says visually impaired Jacqueline Osoro, 31.
According to the Association for the Physically Disabled in Kenya (APDK), 1.6 million Kenyans have a form of disability.
Of these, about 640,000 are physically challenged. One such woman is Godliver Omondi from Mumias, who shares that pregnant women with physical disability have an especially hard time accessing antenatal care.
“I remember when I was pregnant, a nurse asked me to climb onto the examination table for an examination procedure during an antenatal visit. I use a wheelchair for mobility, and it is hard for me to get atop an examining table without assistance. The nurse did not bother to assist me,” says the mother of three children aged between five and twelve years.
“All health facilities must be made accessible to women with disabilities, and these include accessible examining tables, ramps and sign language interpreters. Clinicians should also be trained on how to be more sensitive to our needs,” she says.
One time when she was in labor and on her wheelchair, Godliver says many nurses passed her, assuming that she was there to visit a patient.
“I kept asking for assistance, and when I finally managed to catch the attention of one nurse, she asked me which patient I had come to see. The nurse was shocked when I told her I was in labor. She had not imagined that I could possibly be pregnant”.
Dr Julius Rogena of Machakos District Hospital admits to the lackluster attitude of health providers.
“Just like any other person, people with disability engage in behaviors which place them at various health risks, such as HIV infection. It is unfortunate that the attitudes of some healthcare workers do not reflect this reality.
As it is, people with disability have limited access to HIV education, information and prevention services. They may be turned away from community HIV education forums because of assumptions that they are not sexually active, and therefore at little or no risk of infection,” Dr Rogena says.
This is despite a growing body of research that indicates that those with disabilities are at increased risk of HIV due to their vulnerability.
Thoraya Obaid, Executive Director of the United Nations Population Fund (UNFPA) alludes to studies that show that persons with disabilities are up to three times more likely to be victims of physical and sexual abuse, and are at increased risk of HIV/Aids.
Yet for people with disability to be responsible about their reproductive health, they must be provided with sexual health information and given the safe space to openly express their sexuality. Rarely do adolescents with disabilities receive, either at home, or in school, reproductive health education that enables them to prepare for or appropriately respond to their specific needs and situations.
Jacqueline, who attended an integrated school for her secondary education says the only credible information she ever received on reproductive health was what she learnt during her form three biology class.
“Those who attend special schools hardly receive any sex education, and depend on those who listen to radio or television programmes to ‘educate’ them. Most of the information people with disability have on sex is what they learn from their peers,” she says.
Daniel Aghan, Advocacy Officer at Handicap International says there is an urgent need for the development of policies on access to disability-friendly information, education and communication materials, which take into consideration the different facets of disability.
For the visually impaired, Masakhwe advocates for their special needs.
“To protect themselves from HIV, blind persons use condoms, but their privacy is infringed when for example, they need to check the expiry date on the condom pack.
“They have to rely on a seeing person to read it for them. It is time brailed condoms were designed and made available to this population,” he argues.
Masakhwe says reproductive health programmes should be more accessible through disability-friendly adaptations such as cassette tapes, sign language interpretation, Brailled information, or in formats that are easily readable (such as pictures) for those with intellectual disabilities.
Article courtesy: The Star