Ventilator-Assisted Living©

Winter 2003, Vol. 17, No. 4

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Intimacy, Sexuality, and Home Mechanical Ventilation:
Breathing Intimacy Into Our Lives
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Intimacy & Sexuality

SEXUALITY is the expression of sexual identity, sensuality, self-concept, and body image communicated through:

Ventilator users and others have numerous ways to experience intimacy and express their sexuality. Sexuality, as described below, encompasses a great deal more than sexual activities such as intercourse or oral stimulation. Even people who are paralyzed from the neck down have emotional or psychic energy. Regardless of whether they can participate in physical sex, each person’s spirit and enthusiasm for life reflects that individual’s sexual libido.

Meaningful connections provide the foundation for healthy expressions of sexuality. Healthy sexual relationships are intimate before they are sexual. A person’s emotional energy and attitude towards life is important for living a fulfilling life even without a sexual relationship.

SEXUAL WISDOM FROM MASTERS & JOHNSON

Bill Miller, who relies on a ventilator full-time, comments:

“It’s important to remember and acknowledge that a person can lead a very rewarding and fulfilling life without sexual intimacy. Intimacy is an emotional need, but sexual intimacy is not required to fulfill this need. A nice blend of some of the other forms of intimacy (recreational, aesthetic, intellectual, commitment, work, communication, crisis, emotional, creative, conflict, and spiritual) will do just fine. However, the thoughts expressed here (from various professionals) help to lay the framework for successful relationships and healthy expressions of self and sexuality.

“I think many people with disabilities probably suppress their sexuality because it's easier than not. A great first-step in expression is simply taking pride in one’s appearance, i.e. grooming and dressing nicely. And a smile has always been the most inexpensive and best way to improve one's looks. Having the confidence to leave the house with a smile and interact with people gives a person the chance that their simple expression of a positive self-image might lead somewhere. Even though he or she may not necessarily be "looking" for a romantic relationship, leaving the house and being out in the world makes such an opportunity possible.”

Since research on the sexual-esteem of males is limited, some of the references that follow relate only to females.

Intimate Sexual Relationships

“We still need to be caressed and held and fondled. We still need to love and be loved. We still need to have the physical and emotional releases that sex provides. ... one part of a relationship, and one part of your own sexuality, is having sexual feelings ...” (Kroll, Klein)

Research on people with disabilities indicates that several factors impact their success in developing and maintaining successful long-term relationships. Positive self-esteem, including their attitudes towards their conditions, appears as the primary factor that empowers people with disabilities to experience intimacy and healthy sexuality. Nosek’s group learned that women’s level of sexual activity related primarily to their positive sexual self-image and perception of being approachable by potential romantic partners. Interestingly, they discovered that severity of their disabilities was not a significant factor. (Nosek et al)

Sexual Esteem is the positive regard for and confidence in one’s capacity to experience his or her sexuality in a satisfying and enjoyable way. (Taleporos & McCambe)

Social and environmental issues also have great impact on opportunities for meeting other individuals. (Nosek et al) Living in a place where accessibility and respect for disabilities exists increases chances for participating in work, educational, social, political, and cultural activities and for developing relationships with others who share a common bond.

Other influences include:

COMMITMENT TO THEIR SELF-DEVELOPMENT

Researchers found that women with physical disabilities who invested in a process of self-discovery became empowered to assert their value and womanhood. These women reported living active and fulfilling lives as contributing members of society. Their common characteristics included:

“Though I still have problems physically, I’ve had professional counseling that has helped me tremendously in finding out who I am, what I am, and what I want out of life. Occasionally, I still experience episodes of anger and sadness over my disability, but for the most part I think I am pretty happy.” (Kroll, Klein)

BELIEFS ABOUT INTIMACY AND SEXUALITY

In a workshop on “Health, Wellness, and Longevity”, author and consultant Robert Dilts asked participants to consider their beliefs related to the goals they identified. He asked:

When faced with loneliness and isolation, these questions are important for us to ask ourselves. Our responses are critical for revealing the beliefs that support us, and those that may prevent us from fulfilling our desire for nurturing relationships with people who respect our individuality. Effective psychotherapy is very useful for transforming limiting beliefs that stem from past experiences or are not based in reality.

“And as I get to know more and more of my self-worth, it sort of helps me to identify myself, thinking I am a woman created by God and I am so precious and I am so loved and I have much beauty inside me. I should let it come out. I should not hide it.” (Nosek et al, 2001)

“My new marriage has taught me that the fears I had about my manhood and sexuality as a disabled person were empty ones. Although I miss the conventional sex most men and women experience, I’ve learned to cherish what I still have. We may make love differently, but it’s just as rewarding, just as satisfying, and just as meaningful to us as a couple.” (Kroll, Klein)

“Years later, after much soul-searching, I came to realize that most of my romantic failures came from the latent doubts I had about myself as a disabled person, and the fears I had about my own sexuality." (Kroll, Klein)

SUPPORT OF FAMILY, SPOUSES/PARTNERS, AND PROFESSIONALS

The following findings continue to illustrate that encouragement contributes to developing a sense of positive self-worth and the ability to adapt to relationship issues when physical health occur.

Parents. One study reveals that parents who have affirmed their daughters’ attractiveness and ability to develop intimate relationships contributed to their positive dating experiences and resilience towards social prejudices of physical disabilities. In contrast, daughters of parents who were overprotective, discounting, neglectful, or abusive, had patterns of unsuccessful dating relationships, promiscuity, or exploitive relationships. (Howland & Rintala)

Couples. When one or both individuals have a disability, their ability to cognitively and emotionally redefine intimacy and nurturance in their relationship is the most important factor for successfully adapting to losses in their sexual activities. Non-disabled partners claim that feelings of emotional closeness, mutual concern, and willingness to explore a variety of sexual expression are more important for sexual fulfillment than intercourse. (Esmail et al)

The following factors can support couples as they negotiate a satisfying and fulfilling relationship:
(Esmail et al)

“Love is the productive form of relatedness to others and to oneself. It implies responsibility, care, respect, and knowledge, and the wish for the other person to grow and develop. It is the expression of intimacy between two human beings under the condition of the preservation of each other’s integrity. –Erich Fromm, 1947

Health Professionals. Surveys show that most health professionals do not address how a disability or medical condition affects their patients’ intimate relationships and sexuality. Professionals claim that they feel inadequate in advising individuals about these issues. (Esmail et al) Consequently, they need to learn how they can advise their patients within the appropriate boundaries of the services they provide. For example, professionals providing pulmonary education (e.g., Pulmonary Rehabilitation Programs) can encourage couples to consider the following issues:

ABILITY TO COMMUNICATE HONESTLY AND ASSERT ONE'S NEEDS

Communication is an essential ingredient of any relationship, and the presence of respiratory limitations especially requires strong assertiveness skills. Individuals with breathing difficulties are responsible for protecting their safety by asserting their limits and ensuring that their partner is sensitive and trustworthy in accommodating their needs.

“I’m always open about my disability and willing to talk about it … I’ve read a lot of books on sex and sexuality, so I’ve been able to develop my own sexual techniques that I’ve tailored to my abilities.” (Kroll, Klein)

“If I had to do it all over again, I think I’d do it differently. Intimacy means communicating. Without exchanging ideas and concerns, any relationship is going to fail.” (Kroll, Klein)

“The best sex comes from open communication and the willingness to be silly, to forget about the inconveniences the disability creates. The key to my sexual contentment is being honest with the person I’m with and feeling comfortable with the surroundings I’m in ... Sex is not just an activity, it’s the most intimate form of communication. Above all, you’ve got to be sure to communicate freely.” (Kroll, Klein)

For nocturnal ventilator users and those with invisible disabilities, disclosing their physical needs and limitations to a potentially romantic partner, has been compared to “coming out” as a gay or lesbian. (Davies) In such situations, ventilator users face the uncertainty of another person’s reactions, including possible rejection and abandonment.

ABILITY TO EXPRESS SEXUALITY CREATIVELY

An active and fulfilling sex life does not have to include intercourse. The inability to have intercourse does not mean the loss of ability to have an orgasm or the loss of the ability to love. A disability does not prevent a person from discovering new ways to express sexual feelings or from giving and receiving sexual pleasure. Domeena Renshaw, M.D., Director of Loyola University Medical Center’s Program for Sexual Dysfunction, has written these assertions in her book Seven Weeks to Better Sex. (Remshaw)

When a person uses home mechanical ventilation, lovemaking often requires the willingness and flexibility of making accommodations. (Maynard, Headley) Those for whom intercourse is not an option need to find meaningful and creative ways to express their affection. Whatever a person’s capabilities, it is most important that their sexual expressions are safe, pleasurable, and respectful of their limitations.

“It’s not what non-disabled people might feel, but it’s just as good, only in a different kind of way. More than just the sex, it’s the combination of intimacy and words, the total sharing that makes our lovemaking such a satisfying experience.” (Kroll, Klein)

“This lack of sensation does interfere with my enjoyment but the transfer of sensation to different parts of my body means I enjoy different areas than those where you’d normally expect to gain pleasure – my neck is really sensitive.” (Taleporos, McCabe)

“I’m more focused on my partner and on the intimacy that we share, while before I was more focused on intercourse.” (Taleporos, McCabe)

“In the movies, the woman can go and she can jump on the guy’s lap and do all these gymnastic things, but I have to get him to put me in bed. That takes out some of the spontaneity, but it doesn’t take out the thrill.” (Nosek et al)

Sexual Decision-Making

Healthy sexuality is safe, meaningful, and loving.

Physical and emotional safety is of utmost importance for individuals using home mechanical ventilation. While the Internet offers people with disabilities greater opportunities for developing relationships with others, it also increases the possibilities of meeting individuals who prey on vulnerable personalities for self-gratification. Individuals who are lonely and lack adequate sources of healthy intimacy and sexuality may be vulnerable to exploitive, controlling, or abusive relationships. Predators may act out their unhealthy need for self-gratification through voyeurism, sexual fetishes, or initially acting generously helpful, yet later being controlling or abusive. (Olkin)

When sexuality is objectified, intimacy is actually disguised, often resulting in harmful emotional and psychological effects. The questions below can help in assessing the value and risks of sexual involvement with another person.

SAFETY: Are your sexual activities safe for your health andwell-being? Do you feel safe with your partner? How are you emotionally impacted by your sexual involvement with this person?

VALUES: Does your sexual behaviors reflect and respect your values? Does your partner’s behavior honor your values?

INTIMACY: How well do you know the person? Do you have evidence that he or she is trustworthy? Are sexual expressions you give and receive respectful, comforting, and nurturing? Will they increase understanding, trust, and closeness between you and your partner? Or are they primarily for gaining attention, validation, or gratification?

FREEDOM: Are you both free to choose what you will do? Do you feel afraid to refuse your partner or uncertain about how he or she will respond to your limits?

COMMUNICATION: Are you each able to express your feelings, needs, desires, and limits openly, honestly, and sensitively? Do you feel understood and respected?

In conclusion, workshop co-host, Bill Miller, shares the chorus from country singer Paul Brandt’s song titled:

“There’s a World Out There” (Kent Blazy/Skip Ewing)

There's a world out there and I wanna be in it
I got a life and I'm gonna live it
Don't tell me the sky's the limit
There's footprints on the moon

I wanna do my walkin' down the road less traveled
Sew my dreams where they won't unravel
If you play it safe you won't get nowhere
I can't stay in here when there's a world out there.


Appendix
Examples of Breathing Intimacy Into Our Lives

As ventilator users, we can breathe intimacy into our lives by …

References

Bibliography

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