Sexuality and Reproduction: Major Issues for Women

Sexuality and Reproduction: Major Issues for Women

Anne Hawker
President, Disabled Persons Assembly, New Zealand

Abstract Sexuality for a long time has been regarded only as a narrow meaning of intercourse. Firstly, sex will be defined in this paper. Various aspects of sexuality will also be discussed such as self esteem, communication, touching and relationship. On the one hand, sexuality is used in a narrow sense as mentioned above; reproduction means only the goals of intercourse on the other. Sexual valus and options will be discussed in detail. Before drawing the conclusion, issues relation to sexuality and reproduction for women with disabilities will be presented.

What is Sexuality?

The changes within society, in terms of the questioning and destruction of the patriarchal society has challenged and changed our attitudes towards both sexuality and sex. Numerous books have been written on the subject and society is starting to discuss many issues that have now arisen, as some of the myths have been explored and exploded. As Alex Comfort writes in The Joy of Sex "love is too seriously joyful a matter to be left to the solemnities of academics, moral authorities and the porn trader." Love is the individual responsibility of all of us.

When asked the question "What is sexuality?" many people see only the first three letters and to many sexuality is synonymous with sex, and then only the most narrowest form of sex - putting the penis in the vagina. Consequentially all the rest of the rich range of human and mammalian sexual responses - oral, manual and skin stimulation - are abnormal.

Sexuality is much broader. As Jane Cousin writes in Make it Happy : What sex is all about, "Sex may be a natural instinct but learning how to express your sexual feelings doesn't come so very naturally.... Mostly... it's about sharing pleasure. This means treating your partner honestly, fairly and lovingly. That's the only way to make it happy."

A conference held in conjunction with DPA (Dunedin and Districts) and the Family Planning Association defined sexuality "as both an awareness and expression of ourselves. Factors such as gender, body image, identity and self-esteem affected are awareness of ourselves as sexual beings. The focus was not on specific sexual behaviour but encompassed a wider view of sexuality as an expression of ourselves physically, socially, emotionally and sensuously from birth to death." Further, it includes the individual's thoughts, experiences, learning, ideas, values and imagination. It is masculinity, and it is femininity. Because of all these things, sexuality is many sided and can be expressed in many ways.

Sexuality can be an individualistic or shared experience. It is important that we know who we are so that we can be confidant to express our sexuality. Self expression is an important aspect of sexuality. In The Mirror Within, the author relays a story about a nun who felt left out of the discussion about sexuality because she felt sexual but unable to express it because she did not fit in with the conventional ideas. She expressed her sexuality by praying naked.

"Sexuality is not earned through work or good deeds, nor is it lost as the result of an injury or illness. Every person regardless of sex, age or disability, is a sexual being." ( Hale G. Source Book for the Disabled.)

The Hite Report states that in the ideal world "Sexuality would become just a simple joy, a recognition of one's sexual feelings and from there letting all humans define their sexuality as is most comfortable for them at any given time, in any given situation. 'S exuality' would become an integral part of being, greatly varied and personalised, part of life as a whole."

The narrow view of sexuality has been perpetuated especially amongst males. Male sexuality has been perceived from a performance mentality. Stated basically, Bernie Zibergeld in his book Male Sexuality, the myth has it that "There is quite a lot to learned about female sexuality - about why women think and act as they do sexually and how their many mysterious problems in this area can be dealt with - but little or nothing to be learned or said about men and sex. The males, after all, are so simple and quite content as long as they're getting enough."

This understanding of sexuality has created a "performance mentality" resulting in barriers and gaps in what should be the most intimate of all human relationships. This performance mentality has created barriers for women with disabilities as many men do not perceive women with disabilities as potential partners partly due to entrenched values about beauty and desirability.

Failure to understand the individualistic nature of sexuality has helped to foster the myths and ignorance that exist.

Sexuality and Self Esteem

Touch is an integral part of one's sexuality but will be discussed in more detail later. A sense of "self", self-esteem and self worth are equally important as sexual expression. People who are self-accepting are attractive to other people. Further if people do not regard themselves as sexual beings then others won't. It is difficult to either express or feel love and affection when one losses respect for one's own body. "Personal grooming and hygiene, as well as behaviour and attitudes, reflect our attitudes about ourselves. If we consider ourselves sexual beings this is communicated to others. Your sexuality is your responsibility. What you do is up to you." Hale G. (ed) Source Book.

The person with high levels of self esteem has the following traits:
Feels good about himself or herself
Holds a basic sense of trust in self and others
Doesn't exploit anyone
Gets along in the family
Has a sense of humour and not at others' expense
Forms relationships that mutually enhancing
Cares about others people's welfare."

Mc Carthy W. and Gordon S. Raising your Child Responsibly in a Sexually Permissive Society.

For a person with a disability there are some messages, as summarised by Wendy Mc Carthy and Sol Gordon Raising your Child Responsibly in a Sexually Permissive Society, which will assist with increasing your self esteem.

Nobody can make you feel inferior without your consent.
If you have an interest, someone will be interested in you.
If you are bored, you are boring to be with
If you do not have a sense of humour cultivate one.
Join an advocacy group for people with disabilities
Do not dwell on the meaning of life
Read, discover as much as you can about yourself and the world.
Usually, if you tell people not to feel guilty about feeling uncomfortable, they will respond.

This is only half the story. People with disabilities are often caught in a vicious circle, as a result of the attitudes of family, institutions, society and the media.

In Sex on Wheels, Helen Healy from the Ontario Crippled Children's Society said that while most persons complacently accept sexual identity as males and females from earliest childhood, people with disabilities often are treated as sexual neuters, even by families. "Parents overprotective of their handicapped child shield them from sexual knowledge." As adults they have to rise above their fears and anxieties before they can even begin to accept their own sexuality and needs.

"Young people who are handicapped and from whom sexual information is kept secret, who are discouraged from asking questions , scolded for experimentation, shamed for being found out and denied both the privacy and the social opportunity to explore their natural sexuality, will probably suffer more than would normal children under the same circumstances. The self image suffers tremendously from the handicap; being denied the right to information and the freedom to express their sexuality magnifies these burdens unbearably." Wendy Mc Carthy and Sol Gordon Raising your Child responsibly in a Sexually Permissive Society.

Hospitals concentrate on the disabling illness and treat kids as though their bodies are public property.

Healy said that "kids are examined by ten doctors and nurses all crowded around a naked child discussing its method of urination or other problems."

We can turn out a physically rehabilitated person but we often turn out emotional cripples. Human sexuality is the art of loving. It's not just intercourse, it is your personal relations with others." Dr Wendy Greengross makes the point that we all have to take emotional risks and being overprotective to people with disabilities is never kind and may often be cruel.

The attitude of staff and health professionals has perpetuated the myth that people with disabilities are asexual beings. In Margaret Schindler's book Living with a Colostomy she writes about a visit to a 50 years old woman who was very unhappy on her return home from hospital:

I took with me for this visit a very young looking 70 year old friend who is a colostomist as well as having a mastectomy, and blessed with a delicious sense of humour. When we arrived we found that the woman and her husband were very distressed because they had been told when they asked about their sex life that at 50 they would have to forget about "that kind of thing." My 70 year old friend said "Well, I don't know about you, but twice a week is just about right for me."

The media has had a significant part to play in our perception of sexuality... only for the young, athletic type. As Bernie Zibergeld says, "instead of asking whether the model is physiologically feasible, personally satisfying or enhancing of ourselves and our relationship, we ask what is wrong with us for not being able to meet its standards."

However we are not all sexual athletes and hardly anybody is so disabled that they cannot find some satisfaction in sexual activity, with or without a partner. As Bernie Zilbergeld says: that it is not surprising that the myths of sexuality are perpetuated because "the people who write for and direct the media were brought up on the same sexual script as the rest of us, a fact which their productions attest."

Communication and Sexuality

Communication has been seen as an essential element in sexuality. Sex is usually most pleasurable when it's part of a relationship in which thoughts feelings and concerns can be openly discussed without embarrassment. For people with disabilities this can involve informing their partners of possible consequences of muscle spasms or sexual positions you can't achieve. We must talk to each other, explain what we need and want, what feels good, what bad. Your partner isn't a mind reader. This is all part of sharing sexual responsibility.

Communication takes practice and is often easier to recommend than it is to do. Myron Brenton in his book Sex Talk has some tips on communicating sexually. Many people may see communicating sexually as risky. These tips are:

If you are requesting something which you are afraid your partner may not accept, don't become accusing or legalistic.
If you are asked by a partner don't ridicule the request or be angry because the subject is raised.
Don't start talking when you are angry.
Don't talk when you are both too tired, preoccupied, have had too much to drink or do not have enough time.
Do speak for yourself and not your partner.
Do start on a positive non-argumentative note.
Remember that one person can't change another.

Touching and Sexuality

J. Lionel Taylor in The Stages of Human Life writes "The greatest sense in our body is our touch sense. It is probably the chief sense in the processes of sleeping and waking; it gives knowledge of depth or thickness and form; we feel, we love and hate, are touchy and are touched, through the touch corpuscles of our skin."

To be held is support

To be touched is contact;

To be touched sensitively

Is to be cared for.

Our culture is highly sexual but not very sensual. For many adults, only two kinds of touching seem acceptable: the superficial and ritualised and the sexual. We have sensualised touching to the point where all but the most superficial types are thought to be sexual invitations. One of the sad consequences of this is that couples complain they don't cuddle anymore.

As this poem portrays hugging is good:

Hugging

Feels good

Dispels loneliness

Overcomes tears

Opens doors to feelings

Builds self esteem (Wow, she actually wants to hug me!)

Fosters altruism (I can't believe it, but I actually want to hug that old son of a gun.)

Slows down ageing; huggers stay younger longer

Helps curb appetite; we eat less when we are nourished by hugs...and when our arms are busy wrapped around others"

This is further illustrated by Bernie Zilbergeld in one story he relates:

"Sex is fine and that's great. But there's more. This closeness and cuddling stuff is really something. I never would have believed that I, of all people would like it. Never even occurred to me to try it. Our lives are better because of it. I've gotten addicted to having my feet rubbed and licked and its great. And this you'll never believe; it's helped us with our kids. They were shocked when I started touching them, but they've gotten used to it and we all touch more now. ... Makes us feel closer."

In The Hite Report, one of the participants sums up the value of touching. "Touch brings feelings of warmth, security, comfort, and tenderness. It makes me feel more Phuman, and gives me a sense of kinship, belonging and acceptance. Besides it feels good! But where are all these people that let you touch them like that?!! As Johnson and Masters say "Touch is an end in itself. It is a primary form of communication, a silent voice that avoids the pitfall of words while expressing the feelings of the moment. It bridges the physical separateness from which no human being is spared, literally establishing a sense of solidarity between two individuals."

Families often help in providing healthy attitudes to ourselves as sexual beings. If they have difficulty showing warmth or understanding towards us, or touch inappropriately what message does that give to us to learn from.

For many women with disabilities, touching has often been abusive. 53 percent of women born with disabilities in Canada have been abused. This is a staggering and very sad figure. But what is being done about it ? The UN Standard Rules states the responsibility as an individual responsibility but I believe it needs to go further with some governmental legislative protection. The Rules state: "Persons with disabilities and their families need to be fully informed about taking precautions against sexual and other forms of abuse. Persons with disabilities are particularly vulnerable to abuse in the family, community or institutions and need to be educated on how to avoid the occurrence of abuse, recognise when abuse has occurred and report on such acts." This takes courage.

Relationships and Sexuality

In Mc Carthy W. And Gordon S. Raising your Child Responsibly in a Sexually Permissive Society, the ten characteristics of a mature relationship are listed:

Love, sensitivity and respect for each other
Honest communication
Private thoughts and experience
A conscious sense of the essential quality of the equality of the relationship
A sense of humour and playfulness even about occasional failures
A sense of adventure both physical and verbal which can include displays of affection for each other
Respect for "don't feel like it"
Ability to enjoy foreplay and afterglow as well
Sexual intercourse
Sharing responsibilities including household tasks.

As can be seen from this list, sexual intercourse is only part of a relationship and there are eight more important aspects to a relationship.

However, as Alex Comfort in his book More Joy of Sex writes that "All good sex is partly relational, and if it is really good it generates a relationship. Physical sex and the relationship it involves can be the most effective source of self comprehension, if we take the trouble." A good sexual relationship isn't possible unless there is a balance of giving and receiving between the two people involved. For too long people with disabilities have been duped into believing that "the only satisfaction they can hope to achieve is the pleasure they receive from satisfying their partners. In a one-sided sexual relationship guilt and resentment are inevitable and such negative feelings can make both partners miserable and erode their total relationship." Source Book.

For many people a fulfilling intimate relationship with another person can be the difference between a lonely existence and a rich, sharing rewarding life. Of course there is always the risk of being hurt when another person is involved, however, all of life's richest experiences involve risk taking.

In Intimate Strangers, Lilian Rubin states that what we are striving for in a relationships is "INTIMACY, COMPANIONSHIP, SHARING, COMMUNICATION, EQUALITY." However, the cultural mandates of society that impact on the psychological states of men and women create difficulties in achieving these goals. These are parts of the myriad of difficulties that impact on our sexuality and sexual relationships. These difficulties appear to be greatest for women with disabilities because of the attitude of society.

Sexual Values and Options

Societal emphasis on performance in intercourse has prevented many of us from exploring a wider variety of sexual possibilities. "Recent literature has encouraged people to become less 'goal oriented' in their sexual activities and to explore and accept their own preferences rather than trying to meet an undefined performance standard or to conform to restrictive sexual roles". M. Barrrett Sexuality and Multiple Sclerosis.

Each person must discover the kind of sexual expression that works for him/her and the best way to achieve it. As Bernie Zilbergeld says "You are the person best qualified to discover what works for you. Your feelings and reactions are right for you, and only by acknowledging, exploring and building upon them will you develop the kind of sexuality that gives you the most pleasure." This is particularly true for people with disabilities or they will miss out on a whole part of their being been revealed to them. "Sexual experience should be regarded as an individual experience without rules or score cards and with the only goal that of pleasure for both partners. Let things happen at whatever pace is good for both of you. The object is to enjoy yourselves and to get the greatest pleasure by making the most of what you have, and not bemoaning the functions you may lack. It's important to know what your options are and to experiment with various kinds of sexual expression to discover what is exciting and satisfying. But the key to good sexual relationships for any couple is communication. You must convey to each other what feels good and what is and is not pleasurable." Source Book. Sadly, many people do not realise that sexuality is an individualised, discovered process and the discovering is half the fun.

Sexuality and its expression should involve pride in our individual beauty; choice - knowing our bodies; and responsibility - realising that sexuality is not something that can be taken from us by another person. Embodying these principles into our sexuality will assist with assertive communication because we will become less confused about our feelings, our responses, our needs and our desires in a sexual context.

When the pressure to conform to stereotyped sexual roles is lifted, we are better able to explore a wider range of sexual options. As a result of the knowledge people are discovering a wide range of options. An example of this new found knowledge is that a large proportion of women do not have orgasms without manual stimulation of clitoris; many women are discovering the pleasure of reaching climax separately from intercourse.

The use of aids and erotic pictures all have their place in providing us with the stimulation which helps us explore and enjoy our sexual feelings to the full.

The sexual side of our nature, if it is not to be starved needs as much attention and planning as we give to other areas of our life. Sexual stocktaking has been identified by Carrrera and Kelley as an important part of life and a means of enriching existing relationships.

Fantasy is an important and often neglected part of our sexuality. However, as Bernie Zilbergeld says "any fantasy is fine so long as you are aware that it is fantasy and so long as it does not make you feel inadequate when reality does not conform to it." The difficulty arises because many are unaware that the sexual model as created by society is a fantasy, "one that has little to do with what is possible or desirable for human beings."

Sue Ogden in Sex on Wheels writes of her fantasy. "I dream of an attractive (Kris Kristofferson), well built (Dustin Hoffman) type of man loving and making love to me.

I need a romantic man who will carry me in his arms to bed with gentle softness. I need a man who can accept the idea that my sexual pleasure lies with sincerity in touching where I have sensation, rather than manual craftsmanship. I need a man who can gain personal pleasure from my body without fear of giving me physical or mental pain.

I am a strong young woman, not a feeble cripple. I have the basic sexual desires of other women my age. I have goals and dreams, just as everyone else. Undoubtedly, a man who decides to have a relationship with me will have to be in a class all of his own. He will need a very special kind of understanding, patience, acceptance and love. This is current fantasy, my future reality."

Andy Metcalf and Martin Humpheries The Sexuality of Men summed up the value of knowing oneself and ones desires. "This means being open to discovering what our individual emotional and sexual needs are at the moment, recognising that they can change later. This also means learning to be vulnerable and learning to risk ourselves with others. As we formulate our desires and needs we are learning to reappropriate significant parts of ourselves. This can mean identifying our needs for dependency and passivity as well as, at different times, our needs to be active and independent. This involves taking individual responsibility for our sexual lives as we learn to voice our needs in a clear and open way. But this is threatening to the control we have grown up to assume as men. We have to be open to discovering our needs for ourselves. This is no longer a matter of using our bodies as instruments to satisfy sexual desire; but learning to respond to the needs of our bodies as they emerge." "his exploration will obviously be easier if you accept your own sexuality and if you view sexual options not as alternatives to intercourse but as completely worthy and acceptable sources of sexual pleasure and in sharing in and of themselves. If this acceptance does not conflict with deeply held beliefs or attitudes, it can liberate people to explore their sexuality outside the confiners of "role expectations" and "performance goals."

Reproduction

The UN Standard Rules states the fundamental principle of right to parenthood. "Persons with disabilities must not be denied the opportunity to experience their sexuality, have sexual relationships and experience parenthood."

Further it recognises the role of attitude as a major barrier. "States should promote measures to change negative attitudes towards marriage, sexuality and parenthood of persons with disabilities, especially of girls and women with disabilities, which still prevail in society. The media should be encouraged to play an important role in removing such negative attitudes." The Agenda for Action reinforces this call for attitudinal change and for the "promotion of respect for the right of persons with disabilities to parenthood and family life." What has been the consequence of this attitudinal change. Is it evident in today's society?

As women one of the questions that we wish to find out is what are our reproductive opportunities. I can remember when I was first diagnosed as having MS I was not given a diagnosis but a form to have my tubes tied. Decisions about my reproductive future were not going to be made by a medical professional without discussions with me and my husband. This issue was my induction into the disability sector and its issues. No one made decisions about my life without providing me with full information. This little experience highlighted a number of barriers for women:

Reproduction is not seen as a right of women with disabilities. Women have the right to make the choice about being mothers.
Lack of information on the impact of pregnancy for me on my health/disability.
The fact that it is seen as a medical decision and not a quality of life issue.
Lack of knowledge on behalf of agencies; professionals.
Health professionals often have preconceived ideas and provide the information in a manner which confirms that preconceived idea.
need for women to be assertive and find out the information for themselves.

Other issues which are also relevant include:

Lack of advocacy for women on this most basic issue.
Assumptions that women with disabilities as asexual beings should not and could not consider pregnancy.
Lack of information on new reproductive technologies and how they affect our lives.
Access to sensitively given family planning material.
Need for accessible and sensitive pre and post natal care.
Limited access to reproductive health services such as cervical smears which are accessible, or appropriately explained.

Sexuality and reproductive information which was in an appropriate format for people to understand. I can remember undertaking a sexuality course and part of the difficulty arose because people's lack of knowledge of their own physiology. That for many young girls, especially with an intellectual disability the decision about whether they have a reproductive future is made by either courts or families. This raises the whole ethical issues of who should decide what distinguishes choices about reproduction from other of life's choices.

Appropriate and relevant support services that assist in the nurturing of a child:

Home support that meets the needs of the mother to undertake the tasks that she is unable to perform.
Accessible child care.
Child care that will provide learning experiences which are outside of the mother's abilities e.g. assisting a child whose mother is blind with colours.
Training to learn to be flexible to parenting e.g. bathing at night. I was never able to bath my daughter during the day having learnt through my son, she was at risk of being dropped or burnt. We turned the situation into a happy family occasion and very important bonding time for Mum, Dad and brother.
A recent report on caregiving in New Zealand acknowledged that because of the high decline in partnerships where one partner has a disability that the child often becomes the principle caregiver. Services need to be developed so the child caregiver can also be a child.

Like any of life's decisions, decisions on reproduction require:

Support

Knowledge

Information

Learning to change and be flexible

Learning to have confidence in your ability

Staying power

Sense of humour

In making a decision to have a second child we looked at all the literature, weighed up the potential risk but decided that we really wanted a second child. I am so pleased that we were not persuaded from that.

Issues Relation to Sexuality and Reproduction for Women with Disabilities

The necessity to dispel the belief that women with disabilities are asexual beings incapable of a sexual relationships and becoming mothers.
The need to empower people with disabilities to take risks. The development of self confidence and self esteem.
Need to acknowledge the abuse that occurs - 53 percent of women disabled since birth have been abused.
Accurate knowledge on sexuality being available to women with disabilities.
Right to make choices about parenthood.
Right to make informed decisions, with information provided in an unbiased manner.
Recognition of the right to independence, privacy and control over ones own life.
Consideration should be given to overcoming the physical problems of maintaining a relationship on an equitable basis e.g. adequate housing, home help.
Recognition of the fact that there is a loss and the appropriate education of professionals when addressing this loss and sexuality generally.

These issues still exist today, although they were raised at conferences held in New Zealand as far back as 1985 and 1987.

Conclusion

Fortunately there is now a growing body of opinion which accepts that sexual adjustment and fulfilment is at the very heart of successful rehabilitation. Despite this reality, repression of feelings, with all its consequences has been practised by otherwise seemingly caring people in homes and institutions and sometimes even in loving families. We are all fragile in this area of our lives and can be easily hurt and damaged. By learning to understand our own and others' sexuality we each can become a more complete person. In acts of physical loving we ordinary mortals may find a way to communicate and share a means of fulfilment which, at its best, can reach sublime heights.

For some, intercourse is rarely, or never, possible. But it can be a great mistake to see the goal of intercourse as the only reason for making love. Sadly, for many able-bodied couples it is all there is; two or three minutes of mechanical activity. They miss the delight of gentle and prolonged love making with no essential, predictable goal, centred on shared pleasuring rather than tumultuous release. Such expression is a joy in itself and is valid whether or not it culminates in intercourse. "A loving, determined and resourceful couple, regardless of the disability of one or both partners, can find ways to fulfil their sexual needs and give them both maximum pleasure."Source Book.

Dr David Delvin in his book The book of Love states that "despite all brave talk of a permissive society, the sad fact is that the world is still shrouded in a fog of sexual ignorance."

Mrs. Karen Ngai
Executive Editor
c/o Division of Social Studies
City University of Hong Kong
Tat Chee Avenue
Kowloon
Hong Kong
Tel: (852) 2788 8834
Fax: (852) 2788 7709
E-mail: scngai@cityu.edu.hk

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