What is Sexuality?
Everyone, whether they have a disability or not, has the right to enjoy life free from fear and ill-health. Sexual well being is a key element in this. However, there is a cultural silence around sexuality in general and sexuality of people with disabilities in particular. This makes it difficult for parents and care-providers of people with disabilities to address sexuality concerns of their children and wards.
Here are some common myths with respect to Sexuality
- Sexuality education will make kids go wild
- Masturbation is harmful
- Men need sex more than women do
- Homosexual and bisexual people are abnormal
- A woman bleeds the first time she has sex
- Violence and sexual abuse do not occur in ‘good homes’
- There is no rape within marriage
Similarly, myths around disability and sexuality also exist. Here are some common ones
- People with disabilities are innocent, childlike and asexual – they have no sexual feelings
- People with disabilities are uncontrollable, oversexed and sexually violent
- Because some people with disabilities are dependent on others for their physical needs, they do not have the capacity to make independent decisions about themselves and their lives
- Because some of them may be weak or sick, they are seen as objects of care and asexual
- Because they do not have perfectly formed or perfectly performing bodies, they can never be seen as sexually attractive.
Society perpetuates popular perceptions of beauty and perfection, which gravely impact body image and self esteem of people with disabilities.
What is the perfect body? Those who do not fit into culturally prescribed notions of beauty are treated differently. The further away one is from the norm (the greater the ‘deviation’) the more the person is discriminated against.
Society disables a person – through attitudes of pity, superiority, physically disabling conditions that limit access to buildings, services and entertainment options, which furthers makes people with disabilities dependent on others. Society disables family members of people with disabilities as well; by treating them as people who are burdened and embarrassed all their lives because of their relationship with people with disabilities. Unfortunately this myth may be abetted by the family members themselves, mainly because of the way society has viewed Disability through these years.
Popular Media, such as films, magazines and even mythology creates insensitive and incomplete images of people with disability. People with disabilities are not featured much in news media though this trend is changing slowly. In Hindi movies, depictions of people with disabilities are of two main kinds: the victim (as in the blind mother) or the (evil) villain.
The premium given to intellectual superiority in this world of tough competition also adds to the alienation faced by those with intellectual disabilities
By making persons with disabilities more dependent on others, by showing up the differences of perfect bodies and imperfect ones, by limiting their access to public spaces, society gravely impacts the self esteem of persons with disabilities.
- Hormones: As a child approaches puberty, there are changes in the body – secondary sexual characteristics like hair growth in both, boys and girls, breast development and semen production in girls and boys respectively. This occurs in most children regardless of their disability status.
- Menstrual management is an area that needs attention in girls after puberty. Often, the care provider may not even know if the periods have started, another reason why sexuality and health information becomes critical.
- A sense of identity also develops as children/adolescents grow and with it there can be a host of challenges. As children grow, they begin to express autonomy in different ways, ranging from dressing up, going out, keeping up with their siblings and also special friends and people they begin to have feelings for.
- Persons with disabilities may express feelings of independence, assertion, learning to say Yes or No, which may be contrary to how the care provider has been handling them so far.
- Sexual expression is common at this stage – masturbation, feeling attracted (“crushes”, “love”), wanting to be in a relationship, fantasizing, wanting to socialise more etc are common
- Masturbation is safe and harmless. However adults’ own discomfort around anything sexual can cause a disabled person to feel discouraged or shameful for masturbating. At the same time, people with disabilities may need to be taught that there is a time and place for masturbation and how to adhere to that
- Role models – there are hardly any role models with disabilities for young disabled people to look up to. On the contrary, most successful role models are people who look very different from them. Teachers could organize talks and presentations by ex-students who have achieved a measure of success in their lives, or showcase lives of successful people with disabilities in order to help them aspire for greatness
- Sexual identity – there is an assumption of heterosexuality among most people which can further alienate and isolate a person with a disability who is attracted to someone of their own gender.
- Questions – young people with disabilities have the same questions typical youngsters do but even fewer ways to get accurate answers. This may leave them feeling unnecessarily lonely, confused, shameful, fearful or guilty and may also make them vulnerable to abuse because they have not been given the information and skills to protect themselves.
Ethical dilemmas we may encounter
- How much information to give and when? This is especially difficult in the context of sexuality information.
- What is in the best interests of the young person with disability?
- Who decides what is best for the person and on what basis?
- What is the motivation for making decisions for the young person with disabilities – for example hysterectomy or sterilization?
Some objectives of sexuality education for teens and young adults with disabilities include
- Teaching young adults how to express physical affection in a manner that is appropriate to their apparent ages (i.e. how old they appear), not chronologic or developmental ages;
- Discouraging inappropriate displays of affection in the community, such as hugging strangers;
- Expressing clear expectations that their behaviour conforms with family and societal standards for privacy and personal modesty;
- Teaching children the difference between acceptable behaviours in a private setting and those acceptable in public;
- Teaching children their right to refuse to be touched at any time and that they should not keep secrets from their parents about having been touched inappropriately; and
- Discussing pleasure and affection when educating children about sex.
Checklist for Parents, Teachers and Other Care Providers
- Do your trainees know socially acceptable and anatomically accurate names for referring to the genitalia?
- Do not be in a hurry to implement any new ideas that you have learnt – better to think them through beforehand. You may have to do some homework before you are able to actually implement them.
- As far as possible treat all sexuality related ‘problems’ as you would any other issue of education
- Language is a very powerful medium to change people’s opinions and prejudices; it must be used appropriately and powerfully. Often we use words like normal/abnormal /retarded/etc during our everyday conversations.
- Consistency with policies is important – standardized messages have to be followed by everyone involved in the care of the person with disabilities. Take the time to come up with a list of things you want EVERYONE in the school to follow, for example. Then, make sure that everyone understands this so that those people with disabilities in your care are getting consistent messages from everyone.
- As part of the school management, make sure to convey your policy about sexuality to every parent – send out a circular and tell them that you are also available for one-on-one discussion on the issue.
- Similarly, if you have implemented a new rule at home, ensure that you don’t waver from it, even if it appears inconvenient for you or your child/ward.
- As far as possible, do not generalize and deal with issues on a case by case basis once you have a few basic ground rules in place
- Every one of us has multiple identities. This applies to those with disabilities too. While all one can see of those with severe disabilities are their disabilities, it is important to remember that they are more than their disabilities.
- Recognize that by and large, people of different ages have differing needs regardless of disabilities. We have to treat adults with disabilities as adults, not like ageless children all their lives even when they are dependent on their care providers for everyday basic functions.
- People with disabilities have as much right over spaces, information, fun, pleasure and other benefits that people without disabilities enjoy and take for granted.
References and Web Resources:
(Adapted from www.tarshi.net by Prabha Nagaraja and Gunjan Sharma)