Keeping It Safe
‘I am not in a support group at the moment but I would love to be in one, meet others like me and learn from them. This is not the end of the world, this is not a reason to give up on our hopes and dreams. We are in control, not the disease. I had never been so comfortable with myself before, as I am right now, at least for that I am grateful.’
Woman living with HIV, as shared on Avert.org
What do people mean by safer sex?
Safer sex is often defined as protecting yourself from unwanted pregnancies and sexually transmitted diseases (STDs), including HIV . If you are having penetrative sex with a man and he ejaculates his sperm inside you, you may become pregnant. There are also many infections and diseases that can be passed on through vaginal, anal and oral sex with either a man or a woman. While these are both important elements of staying safe in a sexual situation, safer sex also includes your mental, emotional and physical health and safety. It involves being free from coercion (sexual acts you do not want to perform), knowing how to choose and use contraception correctly, and having mutually consenting and respectful sexual intimacies. Visit this website for more information on sexual health and this one for some creative and funny posters promoting safe sex.
It is a misconception that a disabled body is a deficient body. In reality, almost everything in your body works in almost exactly the same way as any other woman’s. Your internal organs, reproductive organs, and most other body parts may not be affected by your disability. So even if you have a disability, you don’t need to think of your body or yourself as deficient or lacking.
How do I know if I have contracted a sexually transmitted disease?
Some STDs have easily identifiable symptoms, others may not. If you are having unprotected sex (without a condom), it’s best to go for regular gynaecological check-ups. Some common STDs are:
Chlamydia. Most women have no symptoms, but indications can include bad smelling discharge, painful urination, or pain during penetration. If untreated, chlamydia can cause infertility.
Gonorrhoea. Around 80% of women who have gonorrhoea show no symptoms, but symptoms can include yellow or green discharge from the vagina, and pain during urination or penetration. Gonorrhoea can lead to throat, cervical, urethral or anal infections.
Herpes. Symptoms of herpes can show up during the first few days after contracting the infection, but can appear up to 20 days later. Indications of herpes are painful blisters or sores in the vaginal, pubic or anal areas (but they can also develop on other parts of the body). Swollen genitals, headaches, fever or fatigue are other symptoms.
HIV (Human Immunodeficiency Virus). HIV can be transmitted through anal, oral, or vaginal sex, as well as by getting infected blood (by sharing needles or from a transfusion). When a person first contracts HIV, it feels like the flu, with headaches and fever. After that it can take years for symptoms to appear. The only way to tell if someone has HIV is via a blood test. HIV causes AIDS, which is a disease that weakens the immune system, making a person more prone to illnesses and some types of cancer. There are many treatments for AIDS, but no cure. If you suspect or have learned that you are HIV positive, here is a useful resource for people living with HIV.
For a list of common STDs, their causes, and symptoms, check out this website.
Given my disability, what form of contraception should I use?
There are many different forms of contraception. Some are more useful if you are worried about getting pregnant, whereas others are better if you are concerned about contracting an infection. Depending on your impairment, you will need to find a form of contraception that works for you. Some commonly used contraceptives are:
Condom for men. Offers very good protection from pregnancy and STDs. If neither you nor your partner can use your hands, you can learn to put a condom on him using your mouth. You need to be careful that it doesn’t tear, so it’s a good idea to practice on a banana or cucumber before.
Condom for women. Offers good protection from pregnancy and very good protection from STDs. This may not be suitable if you have limited hand movement, cannot reach your vagina, cannot open your legs very wide, or get muscle spasms in your upper legs.
Diaphragm and cervical cap. Offers good protection from pregnancy and some protection from STDs, but may be difficult to find in India. These methods may not be suitable if you have limited hand movement, cannot reach your vagina, cannot open your legs very wide, or get muscle spasms in your upper legs.
Hormonal methods (pill, injection, morning after pill, patch or implant). Offers excellent protection from pregnancy but no protection from STDs. If you are paralysed but are active and do some form of daily exercise, you can take low doses of the pill. If you have epilepsy, you should take pills that only contain progestin. If you have breast cancer, may be pregnant already or have a heavy menstrual cycle that lasts more than 8 days, you should not take any hormonal contraceptive.
Non-hormonal contraceptive pills. Offer excellent protection from pregnany but no protection from STDs. A popular brand of this type of birth-control pill easily available from chemists in India is called Saheli.
IUDs (Intra-uterine devices). Offers excellent protection from pregnancy but no protection from STDs. This may not be suitable if you have difficulty managing your menstruation, have limited hand movement, cannot reach your vagina or open your legs very wide, or if you get muscle spasms in your upper legs.
Dental dam. Used for oral sex (either vaginal or anal) with a woman, and offers good protection against STDs. If you are sensitive to latex or if you can’t find any (they’re not that commonly available in India), use household plastic or sandwich wrap and place it over the area where oral sex is being performed.
Pulling out (withdrawal before ejaculation). Offers unreliable protection against pregnancy and very little protection against STDs.
Sterilisation. The tying of the fallopian tubes, or sterilisation, offers excellent protection against pregnancy but no protection against STDs. Girls and women with disability are often made to undergo sterilisation, or worse, hysterectomies (the removal of the uterus) without their consent. Look at the last question on this page for more information.
Emergency Contraception (the morning after pill). Offers variable protection against pregnancy depending on how soon after intercourse you take it, and no protection against STDs. In India, this is called the i-pill, and is easily available in chemists.
Medical Abortion. Offers good protection against pregnancy, but must be performed in a safe way by a licensed medcal practitioner. This may not be a suitable method for you if you suffer from bad blood clotting, take steroid drugs containing corticosteroids, or suffer from chronic failure of adrenal glands. Look at this website for detailed and easy to read information on medical abortions.
Here is a website providing information on disability and contraception.
(Source: A Health Handbook for Women with Disabilities ed. Maxwell, Belser and David, 2007)
My daughter has a mental disability, and the doctor thinks she should have her uterus removed for her own protection. Is this the right decision?
A hysterectomy – removal of the uterus – should never be thought of as the default option for ‘managing’ girls and women with mental disabilities; rather, it should be considered as a last recourse in the rarest of rare circumstances. In most situations, what hysterectomies accomplish can be accomplished in less extreme ways – via menstrual management, sexuality education, and the use of contraception.
Start by asking yourself a few questions. What are you trying to protect her from? If the worry is sexual abuse, removing her uterus will only protect her from one possible consequence of sexual abuse – pregnancy – not from the abuse itself. Similarly, while a hysterectomy will prevent your daughter from getting pregnant, so will other contraceptives. Hysterectomy is typically used as a medical solution to various conditions including cancer of the uterus, cervix or ovaries, abnormal vaginal bleeding, or chronic pelvic pain – its primary use is not contraception. Are you in favour of a hysterectomy because you feel she will not be able to manage other contraception? Do you see this as a permanent solution to the related ‘problem’ that she will be unable to take care of a child if she gets pregnant? Why not consider equipping her with other contraceptive methods that she has the capacity to use?
Research indicates that women with mental disabilities can lead productive lives with support and medication, have potential for employment, and can often recover and resume daily activities. Given this, the likelihood is that your daughter will be able to manage some methods of contraception. IUDs (Intra Uterine Devices), injections, or hormonal birth control pills (as long as she is not on medication for epilepsy) are all effective methods of birth control that require little or no management on her part. Are you worried she will never be able to raise a child? Many women with mental disabilities have the capacity to successfully nurture and raise children. Equip her with the information that she needs around contraception and parenting to help her make good decisions.
Some families – for example, ageing parents who find it increasingly difficult to take care of their daughters – may see hysterectomy as the best option given their circumstance. For example, some girls with severe mental disabilities may be so deeply frightened of their menstrual blood that medication and professional treatment cannot help. In such cases, parents may feel that their daughter will not be able to manage this monthly trauma on her own.
Many families consider hysterectomies for their daughters because it seems like the easiest ‘management’ option. The option of a hysterectomy may be a benefit for the family, but what is the cost for her? Removing the uterus not only takes away her capacity to bear children in future, but may have side effects including depression, anxiety and memory loss. So instead of thinking of her as someone to be ‘managed’, think of her as a full human being with the capacity to love and nurture. As far as possible, include your daughter in the decision making.
If you must make the decision for her, do so only if she is actually incapable of making decisions in this realm. You need to seriously assess the severity of her disability – is it really as extreme as you imagine, or does she have some ability to comprehend and perform other cognitive functions? Even if she generally understands very little, try explaining to her what the impact of a hysterectomy will be, using simple communication methods like pictures or stories, before taking a decision. It is a difficult decision, and everyone makes it based on their own circumstances. Before you take a step in this direction, think of her as a complete human being who deserves the best life she can have.