PROFESSIONAL RECOGNITION of the sexual problems and concerns of the handicapped has been developing and expanding for the last several years. To date, however, little has been formalized in print and what has been done is primarily directed toward making the professional aware of the area as one of legitimate concern. For this presentation, I would like to formalize some specific matters to be considered, offer specific recommendations for handling problems, and develop a directness with dealing with some of the more controversial issues involved. This is now appropriate, since during the past several years many excellent people have contributed their knowledge and efforts to make the sexual problems of the handicapped a respectable issue of concern and have awakened many to the disrespect that must be attached to ignorance and nonconcern with the subject (e.g., Comarr; Gochros and Schultz; Kempton). These positive efforts have further engendered a desire for professionals to have working models and ideas to follow the general attitudinal changes stressed previously.
My presentation will be divided into several portions. First, I will indicate how the perspective of various individuals or groups color the way this subject is treated. Then I will deal with some specific problems and issues in sexual expression and follow this with recommendations for handling problems that fall into associated areas. My concluding comments will contain several general rules for improving sexual functioning that are pertinent for all, able-bodied and handicapped, but more so for the handicapped.
FIRST, I would like to make clear just how many levels I think are involved with sexuality and how these must be distinguished. It must be understood that when one considers sexuality, one must not think only of genitals or bedroom activity, although that is usually what first comes to mind. At least two broad areas must be considered: public and private sexuality.
How does the person act in public; what role is played by these actions? Will a handicap interfere with the individual’s personal or public appraisal of his or her masculinity or femininity? For example, can a telephone lineman with a paralyzed leg accept, without loss of masculinity, the job of a telephone operator? Can the arthritic housewife accept the loss of her hands and deft touch without considering it a reflection of her femininity?
Sexual patterns and roles are our public demonstration of socially recognized sexual expressions. Public concerns may manifest themselves in the choice of how the individuals interact with society.
Here we refer to the genital sexual responses and those inner problems not usually discernible. This includes the ability to maintain an erection, have orgasm, receive and give genital and sensual pleasures, and reduce sexual tensions in oneself or partner.
Naturally, these public and private concerns might be combined.
NEXT, I would like to make clear that we must not confuse genital satisfaction, love, reproduction, and marriage. These four areas are quite distinct, although they may go together or be related. We must clearly keep them separate in our own minds and in the minds of our clients, certainly to insure just what is being communicated. The four areas of genital satisfaction, love, reproduction, and marriage offer different rewards and present different problems. For example, a client wanting genital satisfaction doesn’t necessarily want marriage and one wanting marriage doesn’t necessarily want children or sex. If this seems like too radical a concept, just recall that it is only a few generations back when our ancestors had marriages that were arranged so sex and marriage were started without love, most present-day marriages are not entered into by virgins, and birth control and family planning are facts of life. In a very practical vein, we must insure that children are to be considered on their own merits not as visual proof of masculine or feminine abilities; reproduction is not sexual identity and neither is genital gratification. A handicapped person might be more disadvantaged than an able-bodied person in having a child who is not wanted for himself but rather as an affirmation of masculinity or femininity.
It is appropriate here to distinguish between the different stages during which persons may become handicapped. These may be considered: prepubertal, adolescent, marriageable, married, separated, divorced, widowed, and senescent. A teenager is obviously involved with different concerns than is a senior citizen and obviously the attendant concerns of one with memories of the past and lost demonstrated abilities would differ from those of one who never had experiences to draw from. While this will not be dealt with in detail now, it is well to reflect on how each stage has its specific concerns.
Perspectives and Issues
At least five different perspectives have to be considered in any professional situation. These viewpoints are those of: 1) the client; 2) the professional dealing with the client; 3) the agency represented by the professional; 4) the family in which the client resides; and 5) the “second person” involved, i.e., the individual to whom the client’s attention is or might be focused.
These five different perspectives all have a similar focus but they may differ quite markedly. There may even be many areas of wide disagreement and friction among these five factions although theoretically they should all be working together.
The client generally looks at his or her problem as quite personal and private. The client may consider the sexual situation as separate from the handicap or part of the handicap but generally thinks it’s a problem to be borne in silence and one that should not concern the professional. This is doubly so for the handicapped compared to the able-bodied. Both the able-bodied and handicapped have, first of all, been taught that sexual matters are private and not to be honestly discussed, so this is a common problem. But the handicapped also has or is given the feeling that any interest or effort that doesn’t focus most directly on the handicap should be considered minor. For example, the blind should worry only about seeing and the paralyzed only about walking.
The professional quite often looks at sexual problems as outside both the professional’s scope and the client’s area of legitimate concern. The professional’s training has generally been toward getting the individual back on the job, capable of caring for a family and generally self-supporting. Regardless of whether the professional has been trained as a physician, psychologist, social worker, or other type of therapist, until quite recently sexual counseling was never considered as within the legitimate scope of activities. Therapists were not taught the clues to which to attend in this area. Often, even if the client does bring up concern regarding the subject, the professional quite often avoids the issue entirely by not replying to the clues or defends himself by saying words to the effect of, “You should be worried about not being able to walk or not being able to see or not being able to hear rather than worrying about your sexual concerns.” It’s as if the sexual concerns have to be of lower magnitude than the other abilities. The professional more than anyone must realize that meeting an individual’s sexual concerns can go a long way in reestablishing or establishing a general feeling of self-worth conducive to general rehabilitation. It must be mentioned here, in contrast with what I’ve just said, that an overzealous professional should in this area, as in others for which he has been trained, be careful to be attuned to client sensitivities. One should not project concerns on patients that are not there, since many handicapped handle their sexual concerns quite well.
Agencies, most often, are interested only in those factors that they consider leading to job placement or getting the person functioning in the home. They think in terms of productivity or income and their distance from the client makes them even less aware than the professional counselor of some of the human sexual concerns of the client. Agencies change even more slowly than do individual professionals. So, even though the professional (physician, social worker, counselor, or psychologist) might be interested in the individual client’s sexual abilities, the agency frequently takes a dim view of these concerns. Often, the agency is most concerned with image and thinks that being concerned with an individual’s sexual problems is inappropriate for a state, foundation- supported, or religion-affiliated organization. Again, I think these views are changing and it’s slowly becoming apparent, to both the professional and the agency, that, once an individual’s worth as a complete person is re-established, he or she is much more apt to be educable, hirable, and self-content with himself and his situation.
Next, we have the family perspective. Here the issue is quite different. To be sure, the family, too, thinks the sexual problems are private and not to be discussed in public. They think they are also outside the province of the agency or professional dealing with the client, yet the family is quite often ambivalent about the situation. While they recognize that these are valid issues, they generally wish the sexual concerns to be ignored; they want them to sort of “go away,” since they are ill at ease dealing with them and don’t really know how to handle the issues. They, too, are beset with the societal value that sex is private and not to be discussed in public.
Quite often, the family would imagine that if, especially in younger people, sex is not discussed, it would never come up in a person’s experiences. As with the able- bodied, they don’t know how to deal with overt sex, whether it be masturbation or displays of affection toward possible sexual partners. They have strong conflicts. On the one hand, they want to consider the handicapped family member like everyone else and thus allow all opportunities. On the other hand, they don’t want to, as they consider it, raise false expectations and hopes. Lastly, it is difficult for the family to recognize that children or parents can be sexual. Regardless of age, elderly parents are often considered “beyond it” and children “not yet ready.”
Last is the “second person.” This is the perspective of the one on whom the client focuses his or her sexual attention. This is also considered to be personal and private, but here the individual definitely is concerned with how the handicap may be involved, although the concern may not be shown. There is the question of just what the partner can do or not do and can this be discussed openly or will the issue be too sensitive for probing? Often both of the parties involved seek advice and counsel from others, lay and professional, instead of speaking with each other about sexual feelings, concerns, capabilities, and expectations.
With my broad introduction and talk of perspectives, I will now present three specific issues that must and can be dealt with within these perspectives. These issues are: 1) performance and expectations, 2) guilt, and 3) communication. While my remarks are directed mainly toward dealing with the concerns of the handicapped, it will be obvious that they apply equally as well to the able-bodied.
Performance and Expectations
Too many individuals view their sexual expression as a performance to be rated and graded on some sort of consensually agreed upon scale. It is as if there were a “right” and a “wrong” way to be sexual and anything less than “right” is to be criticized. Our society certainly fosters these expectations and we live with them in Archie Bunker fashion everyday. For our clients, in a realistic and nonjudgmental manner, we have to realign the performance expectations with performance capabilities, so that the only allowable criteria for concern are based on what the couple or the individuals prefer within their abilities. The capabilities naturally will limit the expectations, but it must be made clear that the value systems that an individual puts on a particular type of love relation, or sexual relation, or reproduction relation, or marriage relationship, should be on an individual level or a couple level, so long as public society is not disturbed. Private acts have no standards that are immutable or written in stone. As we ourselves don’t ask society’s blessings on our private activities, let’s help our clients to be encouraged in arriving at their own acceptable solutions with our blessings. Not only should we sanction their solutions, regardless of how novel, but we must encourage experimentation so that many possibilities are attempted to achieve a maximum of satisfaction.
Here it is appropriate to introduce the issue of guilt. Too often the clients have enough problems with considering themselves different. In the area of sexuality, we must honestly stressthat being different may be of small actual matter, because what one does in the privacy of the bedroom is of concern only to the individuals involved. If the function of sexual expression is private genital satisfaction, then that takes precedence over public approval and, if the purpose is to give or receive love, then that is not dependent upon certain formulas of performance or public acceptance.
With these concepts, the client should realize that guilt is an inappropriate feeling, not because the individual is less able, but because no standards for anyone, able- bodied or not, are legitimately imposed. One needn’t worry about being different sexually because anything goes that is functional and mutually acceptable. Oral- genital stimulation, manual stimulation, anything that the couple or the individual can find satisfaction in doing is okay and we as professionals and agencies have to make our permission and sanction (because we have the power to grant such) very clear. We must not put a negative value on any practice found acceptable, whether it involves masturbation, oral-genital relations, a female superior position, or anything else that satisfies the couple.
For this we have to train ourselves against being judgmental and considering some practices preferable to others. This doesn’t mean that we have to force on any client any practice he or she may find objectionable. We also shouldn’t force our own or society’s guilt-laden values on the person or couple. We may encourage experimentation into previously personal or societally taboo areas. We should do all we can to help remove whatever inappropriate guilt feelings mayexist in the achievement of sexual satisfaction.
Lastly, here it is appropriate to talk about communication. There are practically no sexual concerns or situations that cannot benefit from increased communication by and between the individuals involved. Expectations and performance capabilities can be more realistically appraised with good communication and false impressions can be minimized. The handicapped, as do many able-bodied, often attach a magnified value to certain suspected deficiencies without ever testing the reality of the situation with the “second person.” For example, in the realm of sexuality, most of us are concerned with something in our physical makeup. In this regard the handicapped and able-bodied again are alike. Consider that an individual may be concerned personally with being bald, having small breasts, or being deaf, blind, or elderly. Only by communication with the “second party” can one find out if the concern is mutual or the magnitude of the concern. Communication between the individuals involved will reduce hesitancy in finding out just what is and is not possible and what is or is not acceptable.
As professionals, we must thus encourage open, frank discussions of sexual matters as legitimate topics of conversation (often this means removing guilt in talking about sex). We must realize, parenthetically, that communication may be nonverbal as well as verbal. A touch, glance, smile, or grimace may speak loudly. However, for most, an adequate vocabulary still provides the best means oftransmitting ideas and feelings. Regrettably, not everyone has an adequate vocabulary and we as professionals may help in providing one. For the deaf, for example, we might remedy the lack in acceptable universal signs for many sexual and reproductive ideas. We hope a satisfactory vocabulary is available soon.
WE THEN come full circle. Good communication can “help the other issues, linking performance and expectations and reducing guilt as well as helping in its own way. With this brief introduction, I’d like to present a dialogue and see how it exemplifies some of the issues at hand.1
JERRY: Well, I don’t really think that I had any idea that things were going to be so different after the operation on my back. I thought my sexual life was going to be the same as it always was and it turned out to be completely different.
MICKIE: I think at first I felt a sense of desolation that the emotional side of my life was all over with and that I’ve been condemned to the life of a robot or a zombie.
FRANCIS: I feel embarrassed when I talk to girls because I drool a lot and I spit when I talk. And during the conversation, I keep on drooling; I feel like a waterfall.
GEORGE: A heart attack is a massive insult to the body, and to myself as a person. Anti because of this, the relationship between myself and others—the alienation, the depression—is a whole area of related phenomena that we ought to study very carefully; an area of which we know very little about.
BILL: I’ve been paralyzed for over 20 years and it’s been so long ago that I’ve forgotten what “normal” sex was. But as I recall, it had to do with sex being pretty much equated with an orgasm. But since I’ve been paralyzed and had a few chances for sex, I’ve realized that orgasm is not so important in sex; in fact, it actually hinders the enjoyment of it because when you don’t worry about the orgasm and don’t think about the orgasm, sex just continues on and on and it’s never over.
DR. DIAMOND: When we think of the functions that sex serves, we have to think in terms of giving and getting pleasure, of reducing tension, of sharing intimacies. If we keep that in mind we can remove ourself from the stereotype that “good” sex involves only an erect penis in a vagina; that that’s the only way or right way. Do you feel that the value of an orgasm is part of the myth Bill?
BILL: Well, very much so. In fact, before you kinda work up to something, and then it’s over. This way, you just keep going on and on.
DR. DIAMOND: What do you find the most pleasurable thing now?
BILL: Well, still touching the penis, but just touching the nipples and breasts and the sides. I’m very sensitive under the arms.
DR. DIAMOND: So you could find your own way of giving and getting pleasure and that solves your own needs.
BILL: Yeah, but it’s much better when somebody else does it.
DR. DIAMOND: Well, that’s what I assumed.
BILL: You just have to try—find the right partner and I guess the right partner is just about anyone who shares your feelings toward each other.
DR. DIAMOND: Mickie, how about yourself?
MICKIE: Well, since being paralyzed and getting out of the more severe part of it, I find that I am perfectly normal except that the mechanics of the thing are different. My legs and back are totally paralyzed. As far as feelings are concerned, if anything, they’re heightened because the type of polio I had made me hypersensitive. I find that it’s just mostly the mechanics that interfere. And, of course, the preconceived idea that, because you’re in a wheelchair, “Don’t bother with her—she can’t do anything anyway.”
DR. DIAMOND: Well, we find that even able-bodied persons begin to find that there is more than one way to skin a cat and probably the handicapped find this out a lot quicker. George, how about you and your heart condition?
GEORGE: Well, I feel like there isn’t that comfort that I’m getting from the rest of the people here about my relationship with sexuality. When I had my heart attack, the doctor told me to stop having sex for awhile but he never told me when to come on again. I feel a profound kind of lack of knowledge and hesitancy
MICKIE: George, do you feel a sense of fear in this area?
GEORGE: Oh, yeah. I think that the fear that accompanies this kind of activity is very profound because it’s a deep insult to the body. There’s a great hesitancy and I think this leaves a feeling of separation.
DR. DIAMOND: How about with your wife? Obviously, you can look at it both ways. You may want love but she doesn’t want to lose you. Francis, how about yourself with cerebral palsy? How do you see your condition now?
FRANCIS: Well, I’d like to be like any normal guy. I had this cerebral palsy since back in my preschool years. There came a time when the doctors over there wanted me to progress and I didn’t progress rapidly. Now, I could do almost anything any normal person could do.
DR. DIAMOND: But now, are you dating now? Are you married now?
FRANCIS: Oh, no. I’m still dating girls.
DR. DIAMOND: Jerry, how about yourself with your back condition?
JERRY: With me, it was a problem, I believe, of creating a new self-image. I thought that I had to be the virile male and live up to my wife’s expectations (which she didn’t have) of me. She was perfectly satisfied with what I was able to give her after the accident but I was always trying to do more, and finally I just sat back and enjoyed it, and it was great!
DR. DIAMOND: Why couldn’t it have been this way before?
JERRY: Yeah, why did I have to go through all this misery of thinking that I wasn’t performing and that I had lost my capabilities.
DR. DIAMOND: Isn’t that a problem with all of us— we become spectators, rather than participants. We ask, “What am I supposed to be doing?” rather than, “What can I do?” Shouldn’t we concentrate on what we have, rather than on what we don’t have?
BILL: This business about fear— it can be emotional fear, too. With fear that, once you are handicapped, you’re not goingto be able to live up to the expectations that you’ve been taught in the past other people have of you and you have of yourself. Being in a wheelchair, they don’t have the same expectations; they kind of wonder if you can or you can’t. Once you show that you can have intercourse you can also show them what would normally be progressing steps to intercourse. You can show them that you’ve had good experiences and pleasurable experiences, and the orgasm doesn’t become important anymore—or the typical intercourse methods.
DR. DIAMOND: Did you have different experiences as you went through different ages? Many of you have had your handicaps for quite some time.
MICKIE: I’ve had a rather different type of life. I lost my first husband because of my illness. He couldn’t face up to having a disabled wife and two small children. The second time around, it was great. However, before my husband died, he was, for the last two or three years, so very ill that for us there was no more sex as most people think of it. But there was still a deep affection between us. I built my life around different types of activities, so I can’t say that I really felt too great a lack in my life because he was still very affectionate, very sweet to me, and showed me lots of love and attention, and I tried to do the same for him. That was important. The fact that we no longer had typical sexual relations just ceased to be of any importance to either one of us.
DR. DIAMOND: Do any of you get the feeling that either the spouses or lovers, or what have you, are hesitant in initiating sex because of the handicap? How do you overcome that?
GEORGE: I feel that one of the greatest difficulties with my whole family is lack of being able to say it’s all right. We begin to have a profound doubt of our own feedback mechanism. You know what I mean—an acceptance. That I’m okay where I’m at is kind of cut off because of this regression. You know, when you’re on your own, you lose that trust in yourself.
DR. DIAMOND: Is there anybody that you can communicate with? Your physician or your spouse?
GEORGE: Somewhat; I think more would be helpful.
DR. DIAMOND: Francis, whom do you talk to when you have problems?
FRANCIS: I sometimes talk to my parents, counselors, or probably with the girl I’m dating. I find that the girls are understanding. I talk about the problems that I have and they feel compassion about my problems and I feel that they understand.
DR. DIAMOND: What is your biggest problem that you think you’ve had and overcome? Jerry, how about that?
JERRY: I really believe that the biggest problem was living up to an expectation that wasn’t expected at all.
DR. DIAMOND: But now you don’t worry about it at all?
JERRY: No, I don’t worry about it. That’s just the way it is. My wife is a wonderful woman. She’s very loving and we’ve established a new relationship on a different level.
DR. DIAMOND: You just don’t have the movements.
DR. DIAMOND: Bill, how about yourself?
BILL: I agree with that. That the most important thing is to get your own self-confidence and just do what comes naturally when you’re with your girl.
DR. DIAMOND: How do you do that?
MICKIE: Well, you throw your inhibitions out the window and let it all hang loose,
DR. DIAMOND: How do you do that though? How do you throw out your inhibitions if you’ve got them?
BILL: It’s just a matter of confidence. The first time you may not take advantage of what you later perceive to be the girl’s willingness, then you verbally kick yourself in the rear end. The next time, by God, you’re not going to make the same mistake twice! You’re going to go ahead and do it.
DR. DIAMOND: Mickie, you said something I think is crucial about getting rid of your inhibitions. How about those feelings with guilt? That you may be doing something that somebody else says is not normal?
MICKIE: That is a very hard thing to overcome, but you’ve got to make up your mind; either you’re going to take happiness now while it’s there waiting for you or forget it because you’re not going to come back and do it again. You know—it’s that simple. It isn’t like having a piece of cheese in the “refrig” and a week later going and getting it out. There’s no way that you’re going to be able to do that. So you’ve just got to say—maybe we’ll try something else.
DR. DIAMOND: Sex, in terms of genitals, is important but, in terms of personal worth, getting along with somebody and self-worth are perhaps more important.
MICKIE: Oh, I think so!
WHAT DOES the discussion illustrate? The dialogue demonstrates how the separation of expectations and capabilities is narrowed when guilt feelings are lessened. It goes further, as we must, in reducing guilt and lessening the gap between expectations and capabilities by legitimately doing away with false expectations. For example, we do away with the “myth,” which, in essence, states that the only satisfactory means of expressing oneself sexually and achieving satisfaction is with an erect penis in a well-lubricated vagina. For the able-bodied as well as the handicapped, sexual satisfaction is possible without these practices and, in fact, may even be more satisfying. Hands, mouth, feet, any body part may be used any way to achieve satisfaction, and one means is not, a priori, to be preferred over another. Presenting this concept in a positive way can be very helpful to clients.
Further, we should do away with the “marriage manual” formula and concept, which views some activities as foreplay, some as afterplay, and only coitus as “the real play,” each “play” with a prescribed time allotment and sequence. We must advocate that anything goes, for however long or in whatever sequence. This is as true for those whose motor functions are compromised as for those with a sensory loss. Persons should be encouraged to maximize the use of those functions that remain, rather than bemoan the nonuse of those functions that are lost.
We can do even more to lessen the gap between capabilities and expectations by suggesting the use in sexual expression of some of the same types of devices we would offer to lessen the gap in job performance between capabilities and expectations. I’m referring to the use of prostheses. We certainly encourage the use of and recommend artificial arms, legs, or eyes where they will serve a function, even a cosmetic one. We can do similarly in a sexual situation. While the use of false breasts has become common for women with mastectomies, we might encourage or at least recommend the use of dildos, vibrators, or anything that the client might find usable, functional, or cosmetic, in his or her sexual relationships.
While this might strike some as inappropriate, I think we have to realize that the same reasons other prosthetics are used in normal, everyday life apply to their sexual use. This actually should be seen as quite appropriate for the handicapped since many able-bodied use them routinely; in fact, the able-bodied provide the major market for their present use. The aged and arthritic and hand amputees can certainly use vibrators where they have lost hand function, and an artificial penis or vagina also has its use, for either solitary or mutual pleasure. While it may take some education on the part of both the client and the partner to accept these devices, with professional encouragement they can accept or reject them without the connotations of guilt that might otherwise go along with their use or consideration. It is to be emphasized that these devices are presently available and are most often used by the able-bodied, so they should not carry a special stigma for the handicapped. These should legitimately be sold in surgical supply stores as freely as in the porno supply shops, where they are presently sold.
Prostheses help those with motor problems. For those with a sensory loss, I will offer a suggestion that is also helpful for those with reduced motor abilities, i.e., maximize the use of all possible senses. If a person is deaf or blind, then obviously maximal use is made of other input means. A soft touch or caress or kiss on a sensitive area may be quite stimulating, and we can increase or multiply the use of available senses by reading or viewing explicit, sexually oriented material or pornography, by the use of perfume, good food, fancy candles, music, and the like. Certainly it should be reiterated here that talking and touching, the most basic means of communicating, must be increased. Eye contact and language are to be encouraged. Novelty and spontaneity also have erotic overtones that should be exploited for maximum sexual satisfaction.
The dialogue also stressed another major point made earlier. That is, satisfaction is quite different from orgasm. Further, sex is, itself, usually used as a means of communicating deep feelings. These feelings can be provided with simple touches, glances, and personal interchanges, which don’t require elaborate gymnastics or idealized anatomy. Satisfaction is most often a result of good sexual communication and shared intimacy and is independent of orgasm. Satisfaction and orgasm may be simultaneously sought after but separately achieved. If we make this idea acceptable to our clients, I think we will have helped them in a major way.
IN CONCLUSION, I would like to apologize for not discussing, in detail, special problems associated with pregnancy or contraception, or dealing with the special issues and concerns of the mentally retarded. These must await a subsequent publication. What I did hope to do, however, is alert your attention to: 1) the difference between public and private sexuality; 2) the separate concerns attendant to genital satisfaction, love, reproduction, and marriage; 3) these aspects as different, dependent upon the client’s life stage; and 4) sexuality as viewed from various perspectives. Further, I tried to show how to deal conceptually with several overriding issues for the handicapped, i.e., expectations and performance, guilt, and communication. Lastly, I tried to provide some specific ideas to help meet these issues.
I would reiterate that everyone’s sexual life can be improved by 1) increased communication; 2) decreased guilt with anything mutually satisfying; and 3) education and ease in dealing openly with sexual issues, so that expectations are more realistically in line with performance capabilities. All of this serves the human need for satisfaction in self-assessment and interpersonal relationships. This satisfaction is seen as the first stage in a person’s successful road to rehabilitation specifically, but contentment with life’s lot generally.
What I am offering for you to master are concepts that don’t take a large budget or special, elaborate training. What it does take is empathy, and those in rehabilitation, by virtue of the career choice, have usually demonstrated an ample supply of this.