A COMPILATION OF ESSAYS ABOUT LOVE AND DISABILITY By Robert Mauro ---------- DEVOTEES OF DISABILITY: CAVEAT DATER by Bob Storrs Copyright 1996 by NEW MOBILITY MAGAZINE (800) 543-4116 or http://www.newmobility.com As soon as I logged onto the internet, I dove mouse-first into America Online's "disABILITIES" section. There were dozens of categories, everything from spinal cord injury to chronic fatigue. But there, hidden among the listings, I saw something unfamiliar: "Devotees and Sexuality." I entered that bulletin board and found myself through the looking glass. Devotees, for those as new to this as I am, are nondisabled people who are attracted to people with disabilities--most commonly those with mobility impairments. Since I am all too familiar with being rejected because I have a disability, I was astounded to find that some people are actually attracted to my disability. Before you other wheelers get too excited, you need to know that the devotees' favorite disability group is amputees. A survey of devotees who buy photos of amputees from a service called (what else?) AMPIX reveals their ideal amputee pin-up: She's blue-eyed, blonde, 29 years old, five feet five inches tall, 123 pounds, has one leg amputated above the knee and definitely is not wearing a prostheses. From this description, you can tell that most devotees are male and heterosexual. But there are also gay devotees and female devotees. The few women I have met online are attracted to men in wheelchairs, not to amputees. Why male devotees go for amputees and women devotees like paras, I don't know. Then again, neither do the devotees. As one devotee says, "A devotee is simply what you are." Pretenders and Wannabees There are actually three flavors of devotee: those described who are attracted to people with disabilities, "pretenders" and "wannabees." Pretenders want to "feel" disabled. One pretender asks online where he can buy long-leg braces on the "black market"--so he can use his newly purchased crutches to crawl the mall. Another says, "My biggest hang-up is wanting to feel paralyzed. I can only experience it by using leg braces or a wheelchair in public." He admits to being frustrated by heavy doors and small bathroom stalls, and isn't sure why He voluntarily puts up with the nuisance. "I don't know. I have a genuine visual handicap and I know what it's like to live with that. You would think my actual disability would make a difference. Somehow it doesn't." While most pretenders don't go out in public, many have--since childhood--tied up one leg, fashioned crutches and imitated amputees around the house. Wannabees, in contrast, long for the real thing. Although the AMPIX survey finds that 71 percent of their members have fantasized about being amputees themselves, most devotees and pretenders say they would not want a real disability. Yet medical journals have described people who tried to cut or shoot their legs off. One amputee writes online that she knows a woman "who used dry ice on her legs to cause gangrene and wants both legs amputated above the knee." This desire, she says, is just as strong as the devotees' desire to be with the amputee of their dreams. Wherefore Devotees? Why would a person have a strong desire to have sex with, pretend to be, or actually become a person with a disability? The AMPIX survey finds that the urge typically begins at age 12. One devotee I talked to concurs: "My 12-year-old neighbor broke her leg and was in a cast," he recalls. "We were both hitting puberty and naturally became interested in sex. I remember the wonderful sensation of my first real kiss with her cast pressed against my leg. The kiss and her disability must have been permanently imprinted upon me." It has also been suggested by psychologists that devotees are conditioned during childhood to believe that their needs for attention, love and affection can only be met if they have a disability. This implies that all devotees -- not just the pretenders and wannabees -- must look disabled, or actually become disabled, if their needs for love are to be met. Devotees' attraction to people with disabilities is therefore a form of projection. That is, devotees want to love and care for those with disabilities as they themselves would like to be loved. In talking online to other people with disabilities, I find their reactions to devotees range from disinterest to fury. One amputee says she finds devotees "fascinating and scary." A woman who uses a wheelchair posts angry notes online, calling the devotees' attraction "sick, perverted and psychotic." A disabled man writes, "I'm attracted to above-the-neck amputees. I'm glad to see so many of you online!" Interestingly, even devotees are critical of wannabees. While polite in public, several devotees have said to me in private that wannabees are "sick and bizarre." I was invited to a weekly online meeting of devotees, a live discussion group, not a bulletin board. I was surprised to find them neither sick nor psychotic. The participants are computer analysts, doctors, engineers, and college-educated professionals. There is much discussion of the guilt caused by their "socially unacceptable attraction" and the fear that others will attack them for their "dirty little secret." Many describe a terrible frustration at their inability to find a disabled person to date. But there is also much good natured joking about themselves that is reflected in their online names: Ampman, Orthocite (he likes casts), Braceleg, Legman, Amp4me and the simple but elegant Adevote. Getting Real While devotees shouldn't be labeled as psychotic, we must ask how a real relationship can flourish with a person fixated on the one aspect of our bodies that may repel others and that we ourselves may like least. I asked the online devotees to respond to this issue. None accept that devotees are obsessed or fetishists. One devotee argues, "Attraction to disability is just a preference, like preferring blondes or women with big breasts. A woman's stump is only the beginning of a relationship, not the whole thing." A very tolerant female amputee responded, "I don't want to be a sex object or to be with a man obsessed with my breasts or my hair. Could a relationship be possible with a man obsessed with my stump?" Relationships are the fundamental question. According to the AMPIX survey, although 55 percent of devotees have dated and 40 percent have had sex with an amputee, only 5 percent are married to an amputee. This finding supports the oft-cited observation that no amputee is ever the "right" amputee for a devotee. Once "the stump" becomes a real person, and not just a fantasized sex object, fulfillment of emotional needs through projection is no longer possible and the devotee searches for yet another amputee. In practice, the "ideal disabled person" person may be unaware of devotees and their interests. A woman I know who uses a wheelchair received a call from a man who was "a friend of a friend" asking her to lunch. Halfway through the meal, he began talking about his wife and kids. "Wait a minute," she said. "Are you married?" "Sure," he said. "I belong to a club that has a list of women with disabilities. That's where I found your phone number. What I really want is to have sex with you." Shocked, my friend left immediately. She had never heard of devotees and was understandably frightened that her phone number was listed and that she might be hounded or stalked. Fortunately, she never saw or heard from the man again, nor has she been called by any other member of his "club." Should we be suspicious or even frightened of anyone who finds us attractive? Such fearful vigilance would limit and sadden our lives. But the next time you are on a first date and your companion eyes your wheelchair longingly, discusses your prosthesis or wants to try your crutches, beware. Caveat dater. (Bob Storrs is a bon vivant who assures New Mobility that he and his wheelchair have been thrown out of better places than this.) ---------- The following article originally appeared in Accent On Living magazine and is here used with permission. DOMESTIC VIOLENCE & THE DISABLED By Robert Mauro There has been a lot in the news recently about domestic violence and spousal abuse. Usually it's the man battering the woman. And it's usually the non-disabled man battering the non- disabled woman. Fact is 95% of those who are victims of domestic violence are women battered by men. There are six million cases of men battering women each year. These are reported cases. According to the FBI, only 1 in 10 cases are actually reported, so that means there are possibly sixty million cases of women being battered annually. In the U.S., 21% of married women report physical abuse by their husbands, says Angela Browne in her book WHEN BATTERED WOMEN KILL. One British woman in 7 is raped by her husband reports Ruth E. Hall in her book ASK ANY WOMAN: A LONDON INQUIRY INTO RAPE AND ASSAULT. But if you're disabled and your mate is not disabled, or less disabled than you, the battering can also occur with the non-disabled man, or less disabled man or woman, sibling, parent or personal care attendant battering the man or woman with the disability. The battering of disabled men is slightly higher than the above 5% figure for non-disabled men, according to the director of the Buffalo S.A.F.E. House for the Developmentally Disabled. According to the Health and Human Services Department, children with disabilities are maltreated at 1.7 times the rate of other children. In nearly half of those cases of abuse or neglect, the child's disability was at the root of the violence. The majority of those who are battered -- even among the disabled -- are women, although the percentage of disabled men being battered is slightly higher than the 5% of non-disabled men who are battered, according to a shelter director for the developmentally disabled and learning disabled of upper New York State, as mentioned above. Moreover, she estimates about 50% of the incidences of domestic violence among these marginally developmentally disabled persons involves some type of substance abuse or mental illness, or both. The drug and/or alcohol use and mental illness can be in either the abuser or the abused. And the abusers can be a spouse, sibling, parent or same-sex partner. Whoever is battered, it is a crime and must be stopped. New York State at the time of this writing is working to pass a mandatory arrest law for perpetrators of domestic violence. Some states already have such laws. But if you are disabled, what do you do if you are a victim of domestic violence? Where can you run, especially if you are dependent on the batterer for care? Where can you get help? Protection? Before we talk about those things, let's talk about just what battering is. It is physical abuse. Sexual abuse. Hitting, pushing, shoving, hurting. And besides the physical, psychological, and emotion toll to the victim, according to DOMESTIC VIOLENCE FOR HEALTH CARE PROVIDERS, 3rd Edition, Colorado Domestic Violence Coalition, 1991, the medical expenses from domestic violence total as high as $5 billion a year. Under the law, most acts of family violence are crimes. This can include harassment, reckless endangerment, assault or attempted assault, menacing or kidnapping. According to the Domestic Abuse Intervention Project of Duluth, domestic violence is also about power and control. The batterer uses economic abuse, coercion, threats, intimidation, isolation, and emotional abuse. At the same time, the batterer can be denying or minimizing the fact that he or she (namely, the batterer) is committing this abuse -- claiming instead that the actual victim is the batterer, not the one being battered! Occasionally a couple might begin fighting verbally. Name calling. Yelling. Screaming. As mom always said, "Sticks and stones can break your bones, but names can never hurt you." Nevertheless, verbal or emotional abuse can indeed hurt. In fact, verbal and emotional abuse can quickly escalate to pushing, slapping, punching. And this is the beginning of a very vicious cycle. Now what are the things we can do to avoid being battered. The first thing we can do is never give a batterer a second chance. If someone pushes you, slaps you, hits you, he or she is out of there. The relationship is over. If you have been cut, bruised, or in any way hurt, get photographic evidence of these injuries. Get a doctor to look at them. Report them to the police. Hopefully, the batterer will leave you alone after a police warning or an arrest. If you are lucky, the batterer will never come back. But if this is not the case, you must make it perfectly clear that you do not wish to see this person ever again. Get an Order of Protection. At least it will create a paper trail of evidence if nothing else. The National Women's Law Center says Orders of Protection work in 40% of the cases, successfully keeping the batterer away. Besides getting an Order of Protection, if you can, change your phone number. Move if at all possible. But leaving is seldom if ever something a woman or a disabled person can do. There are few if any shelters which can help the disabled. Most shelters are already full. There is little funding to support the disabled victim of domestic violence or to help him or her find a safe haven, a shelter, a new apartment. According to the Senate Judiciary Committee Hearings of 1990, there are three times as many animal shelters in the U.S. as there are shelters for battered women. As a result, up to 50% of all homeless women and children in our country are fleeing from domestic violence, says Elizabeth Schneider in LEGAL REFORM EFFORTS FOR BATTERED WOMEN, 1990. Therefore, it is clear to see that what is needed is a support system. More shelters. Accessible shelters! Every time a high profile case like the Nicole Brown Simpson case or the Lorena Bobbit case is in the media, there is a great public hew and cry to help those who are victims of domestic violence. But little is actually done as far as funding support groups or building shelters. So many victims of battering are forced by circumstances and lack of support to stay right where they are -- with the batterer. In fact, 31% of abused women in New York City return to their batterers primarily because they could not locate longer-term housing (Dwyer & Tully, 1989). If you need help, call a domestic violence hotline, rape hotline, the police, 911, or the National Coalition Against Domestic Violence at 303-839-1852. There is also an 800 number for battered women. It is 1-800-656-HOPE (1-800-656-4673). It is totally confidential and will put a woman in contact with a local rape crisis center within about 20 seconds. If you're in New York State, call the New York State Domestic Violence Hotline at 1-800-942-6906. I want to say a few words here about disabled men and their non-disabled partners. Men with disabilities can be battered, too. This has been reported, but it is usually the wife battering her elderly husband who has Alzheimers, parent battering a disabled child or a sibling committing the violence. I haven't found much information about physically disabled men being hit or in other ways physically abused by their non- disabled mate or date. We have all heard of the abuses that go on in nursing homes and in the Willobrooks of this world, however. So we know such abuse happens. Men must report it when it does happens. Never be ashamed. Battering is battering no matter who does it to whom. And disabled men and women are more vulnerable and less able to escape or protect themselves than the non-disabled. According to "From Access to Equity," a report written by Jane Thierfeld Brown and Grace Gibbons Brown of the Office for Disabled Students, Barnard College, "When it comes to women with disabilities, however, we do not hear the voices of victims [of domestic violence]. We read studies on abuse and women with disabilities. Agencies serving abused women have usually included provisions for women with disabilities as an afterthought, if at all." Fred Pelka says in the November 1993 issue of Mainstream, "Sexual abuse of persons with disabilities is considered by some to be an epidemic, but few voices from our community are raised in outrage. Why?" Good question! Now what is the answer? Fear of retaliation? Fear of loss of a care giver? Fear of loss of a place to live? Fear of violence? There is too much violence in this world. We must never resort to physical abuse when we are angry. Yell, scream, but never hit. If you are someone who does hit, get help immediately! You need it. If you are battered, report it. You must. Your life may depend on it! For a list of books and pamphlets on sexuality and abuse of persons with disabilities, write to: SIECUS, 130 W. 42nd Street, Suite 2400, NY NY 10036 or call 212-919-9770. Copies of "Sexuality and Disability, A SIECUS Annotated Bibliography of Available Print Materials" are $2.50 each. The Roeher Institute is Canada's National Institute for Education, Information and the Study of Public Policy Affecting Persons with Intellectual Impairment. You can get an excellent catalogue of publications from The Roeher Institute. One of these publications is ANSWERING THE CALL: THE POLICE RESPONSE TO FAMILY AND CARE-GIVER VIOLENCE AGAINST PEOPLE WITH DISABILITIES. Write The Roeher Institute, Kingsmen Bldg., York University, 4700 Keele St., North York, Ontario M3J 1P3, Canada. Or call: 416- 661-9611. For information on domestic violence, write to Domestic Abuse Intervention Project, 206 West Fourth Street, Duluth, Minnesota 55806. Or call them at 218-722-4134. Ask for a copy of THE POWER AND CONTROL WHEEL. A couple of good book to read are: GETTING FREE: A HANDBOOK FOR WOMEN IN ABUSIVE RELATIONSHIPS by Ginny NiCarthy, published by Seal Press. And: DISABLED BATTERED WOMEN (Item #60), which is available for $6 from the National Center on Women and Family Law, 799 Broadway, Suite 402, NY NY 10003. Call 212-674-8200. Victims of domestic violence who have disabilities can write to: The Arc, POB 300649, Arlington, TX 76010. Call 817-261-6003. Or: National Assault Prevention Center, POB 02005, Columbus, OH 43202. Call 614-291-2540. On February 21, 1996, President Clinton announced a new hotline for victims of domestic violence. by calling 1-800-799- SAFE, you can speak with a counselor and get help immediately. Finally, all facilities providing shelter, medical, psychological, or crisis counseling for victims of abuse or domestic violence must be wheelchair accessible and have a TDD. A sign language interpreter should be available if needed. ---------- SAYING WHAT'S IN YOUR HEART By Robert Mauro What have you been saying to the one you love? Do you tell him or her how you feel, romantically, I mean? Many of us find it hard to express our romantic or sexual feelings. We are afraid to seem too needy, too infatuated, too pushy or too horny. Meanwhile, inside we are filled with desire, passion, and a need to be as close, as intimate, as we can be to the one we love. So what do we do? What do we say? Words come hard when we are face to face with the person we love. Words come a bit easier on the phone. And they seem to be easiest to express in writing. Cards, E-mail, letters are a lot easier to compose. When you write to someone, you can take your time putting into words exactly what you want to say. Many times when you are face to face or on the phone, your nerves get in the way of you thoughts and your tongue. You might say the wrong thing or say something you feel but which comes out all wrong. One positive aspect of saying it live is that you sometimes get instant feedback and you can quickly correct any misstatements or misunderstandings. If you send something by mail, your words sit there in your loved one's face and he or she is left wondering what you mean by them. It's good to talk. If you feel good about what someone has said or written to you, or how their affection and attention have made you feel, try to let him or her know. There's no need to go overboard. Just drop a hint. If you say nothing, your special someone will wonder if he or she has said something you do not like. I have tried to figure out why some of us are so afraid to express our innermost feelings, our most intimate emotions, why we are terrified to respond to the loving feelings others express toward us. Of course, one reason can be that we do not share those feelings and would just rather not tell the person that such feelings are not mutual, thereby hurting him or her. That's not a good idea. It leaves the person, who is expressing his or her heartfelt emotions, confused, hanging, wondering. Another reason for not responding to words of love can be fear. Fear that we are not really that good. We feel we don't deserve all this praise or affection. This might be because, throughout our lives, we were never seen as loveable, handsome, pretty, desirable, or sexually appealing. But when you are loved by someone, for whatever reason, you become desirable to that person. And he or she needs to know you have feelings for him or her, too. Love is a two-way street. You have to try to give little gifts of love. I don't mean things, objects. I mean words. Words from you heart. Just something to let the one who loves you know he or she is making you feel loved. Too often when someone says he or she wants to hug us or kiss us, we might think this is just a need for sex or a desire on the other person's part to feel reassured that he or she is sexy. But is that what all this is really all about? It very well might be. But if you are a pet owner, how often do you hug and kiss your pet? My cat is always getting hugged or kissed by me. This isn't about sex. It's about love. My cat and I are very close. We respect each other and show affection for each other. There is a need in both of us for that closeness that has nothing to do with sex. I agree lovers are not pets or animals. Well, not all are. ;-) Maybe some are some of the time. It does get confusing! Seriously, we need to try to show our feelings for each other. We need to open ourselves up to the man or woman we love, and who loves us. I know this is not easy. Many of us have been badly hurt by those we thought we could trust. We have been used and abused. Some of us have been emotionally and sexually exploited. All I can say is we have to go slow, get to know the one who says he or she loves us, and try to develop trust. Trust for him or her, and trust for our own feelings. I don't mean you have to say things like, "I want to tear your clothes off and make passionate love with you." But try to say things like, "You make me feel loved." Your man or woman friend needs to feel he or she is making you feel good. A good man or woman will probably stop saying these affectionate things to you if he or she doesn't get some positive feedback from you when he or she says them. Without that feedback, he or she will assume only he or she feels that way. And you do not. So if you share these feelings of love, say what's in your heart. By doing so, you'll warm the heart of the person who cares deeply about you. And he or she will continue to warm yours. ---------- A DRUG FOR MALE IMPOTENCE By Robert Mauro Men who have suffered from impotence because of a variety of medical and/or psychological reasons, can now have firm, long-lasting erections within five to twenty minutes in 80% of cases by injecting Caverject. On July 6, 1995, the FDA approved Upjohn's Caverject, which is available only by prescription. It is injected directly into the penis and will allow men to engage in intercourse. About 10 years ago, doctors noticed that alprostadil, a naturally occurring form of the hormone prostaglandin E-1, could help. It was available to treat rare heart defects. Caverject (Upjohn's brand name for prostaglandin E-1) works by relaxing the smooth muscle of the penis, which enhances blood flow. The only side effects are pain at the site of injection. According to the "Journal Of Urology," Oct. 1994, V152, N4, Pages: 1108-1110, "The combination of 20 mu g. prostaglandin E1 with 20 mg. procaine decreased the incidence of local pain significantly." Another side effect was scar tissue. Yet to this the "Journal Of Urology," Sept. 1994, V152, N3, Pages: 961-962, said, "Intracavernous injection of vasoactive medication may cause fibrosis of the tunica albuginea or corpus cavernosum. These adverse effects have been clearly linked to papaverine and phentolamine but to our knowledge the development of fibrosis or a Peyronie's-like plaque after the injection of prostaglandin E1 has not been previously described. We report a case of Intracavernous hematoma, penile curvature deformity and Peyronie's-like plaque that developed after initiating intracorporeal self-injection of prostaglandin E1 for erectile dysfunction." Besides the above side effects, there is also a possibility of abnormally prolonged erections. According to the "Journal Of Urology," May 1995, V153, N5, Pages: 1487-1490, "The overall duration of [non-prolonged] erections was ... with prostaglandin E1 88.5 minutes ... Side effects were minimal...." Doctors will give the first injection in office to adjust dosage and train users. Caverject has proved it relieves impotence due to neurologic, vascular or psychological causes. Did couples find this drug helpful to their love making? According to the "Journal Of Urology" Jun. 1994, V151, N6, Pages: 1530-1532, "Among those responding to prostaglandin E1 intercourse was rated satisfactory by 81% of the subjects and by 90% of the partners." If you are interested in trying Caverject, consult your doctor or a good urologist. ---------- THE NEED TO BE INTIMATE By Robert Mauro Many of you who have accessed my web site, whether you're disabled or not, have one thing in common: a need to be intimate with someone. This doesn't necessarily mean sexual intimacy, but rather a need to have someone you can tell your deepest secrets to, who you can confide in and who can confide in you. When you lack such an intimate relationship, you sometimes can feel alone and as if something vital is missing from your life. It is intimacy that is missing. According to the book INTIMACY: STRATEGIES FOR SUCCESSFUL RELATIONSHIPS by C. Edward Crowther, Phd, and published by Capra Press, P.O. BOX 2068, Santa Barbara, CA 93120, intimacy is indeed a need and you can all learn how to make intimacy a part of your life. You just have to know how. And this is a skill you can learn, if you really want to. One of the biggest problems in obtaining intimacy is fear. Many men and women don't even realize they are afraid of intimacy. But if you begin to feel very anxious when you finally begin to get very positive responses from someone you like, you might be experiencing a fear of intimacy. Most people experience this. The key is to go with the fear. Don't retreat. No relationship is easy and we all experience some anxiety just as the relationship begins to blossom. A fear of losing your autonomy can also make you pull back when things become "too intimate." Moreover, the fear of rejection and possible abandonment can act as a deterrent to becoming intimate. If you are so afraid of being turned down or eventually abandoned, you might subconsciously steer clear of intimacy. You might even sabotage a relationship if it becomes too intimate for you. Some people who are afraid of rejection or abandonment attempt to test the other person's love by setting up unrealistic requirements. You might even become obsessively possessive. Intimacy and true commitment have to have trust. Your relationship should become a safe harbor for you both, not a dead end. What is true intimacy? True intimacy can include touching, tenderness, laughter, talking, giving, receiving, trust, sex, respect, forgiveness, fidelity, commitment and specialness. You want to give these things to the person as well as share them with him or her. Without intimacy in your life, the slightest rejection, the slightest hardship, can become magnified. On the other hand, if you're lucky enough to have an intimate relationship, the problems of life seem to become less intense. You begin to feel you can do more and even take on more. That is the power of intimacy. And that is the power of love. ---------- The following humor piece appears in a different version in my book Finding Love And Intimacy THE LONELY PERSON'S TEST By Robert Mauro The following is a test to determine if you're a lonely person. Be honest with your answers. Loneliness is nothing to be ashamed of. It's really only a major inconvenience, as in "Why is my life so EMPTY?!" Therefore, relax, sit back -- no wait! Get up and get a No. 2 pencil, then go back, print this out, sit down and take this test. Simply circle the numbers that apply to you. Just one number per question. You have three minutes to complete the test -- unless you're a lonely person. Then you have all the time in the world. A. You're sexually attracted to male and/or female cartoon characters... 1. Never 2. Sometimes 3. All of the time B. On a first date, you'd be happy to go to... 1. Paris 2. A movie 3. A toxic dump C. You find yourself constantly dreaming about... 1. Water 2. Jogging 3. Partially and/or totally naked people of your sexual preference D. When you think of a pet, you'd be happy even with... 1. A dog 2. A fish 3. A Chia Pet E. When it comes to TV viewing, you find yourself viewing... 1. "National Geographic" reruns 2. "I Love Lucy" reruns 3. The Playboy Channel's "Naked Sex Fantasies" reruns F. On a first date, you'd be happy to get... 1. A smile 2. A hug 3. Nausea G. When it comes to appearance, your date can be attired in... 1. The latest Paris fashions 2. Casual clothes 3. Anything found in a Salvation Army Clothes drop H. Things you feel your date can say to you on a first date... 1. "Nice restaurant." 2. "Expensive restaurant." 3. "You pay, jerk!" I. Things you feel you should bring on a first date... 1. A stun gun 2. Tic-tacs 3. A T-Shirt that reads, "ASK ME! I ALWAYS SAY YESSSS!" J. Things you hope your date will do when the date is over... 1. Drop dead 2. Move to another country 3. Come in and make even semi-passionate love to you Now let's determine your lonely person score by adding up the numbers you've circled. Then locate your lonely person score below and your true feelings about your loneliness. YOUR SCORE YOUR TRUE LONELINESS FEELINGS 10-14 "Lonely? Ha! I need no one, you jerk!" 15-19 "True...I'm somewhat lonely, but I love TV 20-24 "I'm lonely! I HATE TV!" 25-29 "I'm very lonely! Take me! I'm anybody's!" 30 "I'M EXTREMELY LONELY! I HATE MY LIFE! I HATE MY TV!! So I'll do anything you want! Just call me! Pleaseeeeeee! Even Collect! I don't care if you live in Pago Pago! Just caaaaaaallll!!!" ---------- WHEN LOVERS FIGHT By Robert Mauro Even people who love each other, occasionally fight. Fighting is normal. By "fighting" I DO NOT under any circumstances mean physically fighting, i.e., hitting, slapping, pushing -- all of which are NEVER okay. (See my article on domestic violence.) When I talk about fighting in this article, I mean exchanging words; words can indeed hurt emotionally and psychology. It is never right to use words to hurt anyone. And emotional abuse can be harmful, too. So when I talk about using words to fight in this article, we are not talking about emotional abuse. Emotional abuse is the use of words and even attitudes to belittle someone. This is done by cruel name calling, constant cruel name calling. And it is also done by ignoring, making gestures at, and displaying a look that can hurt. People who live together, have a sexual relationship, or who are married, will argue. This is normal. And it is never a good idea to hold in your anger. On the other hand, it is not a good idea to just hurt the one you love with harsh words. It is better to try to talk out your differences, whether these are disagreements over your budget, your beliefs, your living arrangements, or your sex life. If you don't discuss the things that are bothering you, they will just build up until you burst out in angry, hurtful words, gestures or attitudes. Lovers sometimes find it hard to talk to a mate or a lover about things that are annoying them. Maybe you wish the lovemaking was more tender, i.e., more foreplay before intercourse. Yet you are afraid to express this need, thinking your lover will think he or she is insensitive. Well, don't just lie there. Use some humor. Say what you feel in a nice way. Don't say, "I hate it when you just jump right into intercourse, you stupid klutz!" Try something like, "Tonight, honey, let's spend 30 minutes using just our fingers, toes, and tongues and maybe a little whipped cream to tickle and touch each other. And then...let's make looooovvve." Some lovers are almost phobic about fighting. They are fearful of any confrontation with a loved one. Some of us are so insecure over the way we look or over our disability, we are afraid to argue with our lover, fearing he or she will get upset and abandon us. Some of us feel slightly depressed as it is; fighting only plunges us deeper into depression. You might even be fearful of fights because of the fights you might have experienced between your parents when you were a child. For example, your parents may have ended up divorcing -- or you were terrified they would. You were terrified you'd lose one of them. So fighting to you might bring back feelings of losing the security of a stable relationship, losing a loved one. The way to fight is fairly. Don't use cheap shots like saying, "You never loved me, you slut, bum, slob, etc.!" Or, "You're just a slob, pig, slut, bum, etc." These are just hurtful..to say the least. Instead, try to point out things that upset you, by putting them in a positive light. What I mean is don't say, "You're a selfish, insensitive lover in bed!" Try, "I love it when you touch me here for hours, honey." Some say "don't sweat the small stuff," meaning don't get annoyed by someone forgetting to leave the toilet seat up or the cap off the toothpaste. But don't let things like selfish sex and cruel words or behavior go unchecked. Talk them out. Get them off your chest before you explode and have a fight that will really hurt you both deeply. It's never right to break dishes or crush beer cans when you fight. But breaking a lover's heart can be much more painful. ---------- HOW NOT TO GET USED By Robert Mauro If you're out there looking for love, there's always the danger of getting hurt. I'm not talking so much about getting hurt physically -- although that is a possibility. (See my article on battering.) What I'm talking about here is getting hurt emotionally. There are people out there who will attempt to manipulate you and your emotions for their own selfish needs. That's why in any relationship, you have to be wary of certain types of behaviors people might use to exploit you. If you begin to get letters, calls, or E-mail filled with praise or words of love before the person who's writing to you even knows you well, a warning flag should go up. At best, these can be the expressions of a lonely persons who is simply desperate for a relationship and will say anything to rope you into one. At worst, a person who flatters you with praise of promises of love, might be trying to manipulate you into bed. He or she is out for just one thing. And we all know what that is. The big problem with both of these personality types is that neither is interested in a real, long term relationship with you in particular -- but with anyone in general. Moreover, the first person is just interested in security or its illusion, i.e., he or she is needy; the second person is just interested in sex, i.e., he or she is horny! You -- a three-dimensional person, with feelings and desires -- are not what they really want. They want something -- one thing -- they can get from you. In a truly loving relationship, both partners should be interested in the other person because of his or her personality -- and not what they can get out of the other person, not what they can take from them. Another very important point to remember when meeting someone face to face for the first time, or until you really get to know the person, is to meet that person in a public place. Don't let him or her talk you into going back to your place or theirs. Get to know your new friend well before you let him or her pick you up or take you home. Don't be paranoid -- but do be wary. It's always better to be safe than sorry. The main point to remember here is to not get used -- and someone who really loves you won't use you or pressure you. They will be your friend. And that's what we should all be out looking for -- friends. Before anyone can become a lover they first have to become a friend. ---------- PROSTATE PROBLEMS AND THE DISABLED MAN By Robert Mauro One problem most men experience as they age is prostate trouble. Some men with disabilities might be even more prone to these problems because of frequent urinary tract infections and added stress and anxiety caused by their disabilities. The National Institute of Health says that 80% of men between the ages of 50 and 60 will experience problems with their prostate. WHERE AND WHAT IS YOUR PROSTATE. The prostate is a walnut-size gland located below the neck of the bladder. It encircles the urethra. It produces a thin, milky alkaline fluid (prostatic fluid) which mixes with seminal fluid to produce semen. This provides motility to sperm and helps transport it. As men age, experience stress, anxiety, or urinary tract infections, prostate troubles can occur. This is usually presented as an enlargement of the prostate, which closes off the urethra, impeding the free flow of urine. The three main problems of the prostate are: 1. Prostatitis, which is a bacterial infection of the prostate gland. Most men with this will experience frequent urination, and a painful, burning sensation on urination. 2. Benign Prostatic Hypertrophy (BPH). This is a non-cancerous enlargement of the prostate. The symptoms of this are frequent urination, pain on urination, difficulty starting and ending urination, dribbling urine flow, and getting up during the night to urinate. 3. Prostate Cancer. This can be detected by a PSA test, mentioned below. Most of these problems are not life-threatening if caught early and properly treated. The big danger is prostate cancer, which is curable if treated promptly. Prostate cancer is the second leading cause of death in men, and 1 in 10 men will get prostate cancer during their lifetime. One in five men might need surgery, which they try to avoid. Cancer surgery has undesirable effects, so men tend to put it off. The procedures can result in incontinence or impotence. Surgical procedures can but might not include removal of the testes to reduce production of the male hormone. This form of surgery is called an orchiectomy. The male hormone promotes the growth of prostate cancer. Transurethral prostate resection is the removal of the prostate via the urethra. Prostate removal is also called a prostatectomy. Although the surgical side effects are disagreeable, waiting is dangerous. It can allow the cancer to spread and eventually cause death. SYMPTOMS OF PROSTATE TROUBLE. With a prostate infection, you can experience pain and burning when urinating or when ejaculating. You might even have fever, chills, back pain, pain in the testicles and around the rectum. You'll probably also have difficulty trying to urinate. Each time you try to urinate, only a small amount of urine is produced, most being retained in the bladder. This urine retention can result in bladder infections, and kidney problems. With some prostate infections, you might even see blood or pus in the urine. Frequently someone with an enlarged prostate will get up several times during the night to urinate. This is called nocturia. It can cause fatigue from lack of sleep and mild dehydration when the sufferer tries to ease his problem by not drinking adequate liquids. CAUSES. Prostate infections can occur when bacteria enter the urethra. But an enlarged prostate can also be caused by stress and anxiety. This is sometimes referred to as prostrate syndrome or prostatodynia. With this you might feel pain behind the scrotum and in your lower back. There will also be frequent urination. And finally cancer can cause prostate trouble, big prostate trouble -- if not detected early. Prostate cancer can be detected by a PSA test, which I'll mention below. WHAT TO DO. If you are having trouble urinating, are having pain or burning during urination, see a urologist immediately. He can determine if you have an enlarged prostate by performing a digital rectal examine. Tests can determine if you have an infection or if cancer is present. When we talk about prostate trouble, this can include many different problems, as I mentioned above. These can be benign or malignant, acute or chronic. Some can be mistaken for a urinary tract infection, and some can be part of a urinary tract infection. Infections can be treated by antibiotics. But cancer may require radiation or surgical solutions, as mentioned above. PROSTATE CANCER. As I have been saying, prostate cancer can be detected early by a PSA test. PSA stands for Prostate Specific Antigen. If this antigen increases over time, it could indicate the spread of cancer. The PSA test is not always accurate, occasionally giving false positives, but it has been improved recently. Discuss this test with your urologist. Men over 50 should have a PSA every year. African-American men and men whose relatives have a history of prostate cancer should have the test done more frequently. If you're older, discuss with your urologist how often you should be tested. Other tests may include ultrasound, digital rectal exam, and biopsy. WHAT ABOUT SURGERY? There are different procedures for different conditions. Some can result in incontinence, others can cause impotence. But a good urologist with discuss all the implications and possibilities with you, including new drug therapies. The use of female hormones can also be used to stop the production of the male hormone, which can promote the growth and spread of prostate cancer. HOW TO AVOID PROSTATE TROUBLE. Empty your bladder fully when it is full. Sit while urinating instead of standing. Try to ejaculate at least three or four times a week. Avoid caffeine, spicy food, alcohol, and drink plenty of water to wash out bacteria which can cause urinary tract and prostate infections. Drink cranberry juice, but note that orange juice has too much sugar. The sugar can increase bacteria as can carbonated drinks with high sugar content. Also avoid diuretics and decongestants which may cause urine retention. If you are bothered by nocturia, do not drink fluids after dinner and empty your bladder before going to bed. Finally, learn how to manage your stress and anxiety. See a urologist as soon as you experience the above symptoms. Have a yearly PSA test and a yearly digital rectal exam. ON THE WEB. You can get a lot of great information on the prostate by surfing the World Wide Web. Set your Internet Web browser to: www.search.com. Once you are there, do a search on PROSTATE and you'll find a wealth of information on everything from herbal remedies for the prostate, to The Prostate Dictionary, to information on prostate cancer from the National Cancer Institute, even a home page all about treating and dealing with prostate cancer. You can obtain THE PSA TEST: AN AIDE TO DETECT PROSTATE CANCER brochure from Hybritech, Inc., P.O. BOX 269006, San Diego, CA 92196-9006 or by calling Hybritech at 1-800-854-1957. This brochure may also be available from your doctor. It covers all aspects of prostate cancer and the PSA test. IN CONCLUSION. Do not neglect your prostate, especially if you are a man with a disability. If you already have trouble with urinary tract functions because of a neuromuscular disability or a spinal cord injury, you may be more prone to prostate trouble. So be alert and get help when symptoms occur. ---------- SEX AND POLIO SURVIVORS By Richard Bruno, Ph.D. E-mail: ppskir@aol.com Post-Polio Service, Kessler Institute for Rehabilitation Last January I got a brand new Macintosh computer that came with a modem. Ever since, I've been "surfing" the Internet, hardly stopping for food or sleep. You'd be amazed at what I'm finding on the disABILITIES bulletin boards: Sex. Yes, unbridled, undiluted and unimpeded discussions about sex among people with all kinds of disabilities, from high-level quads to quadruple amputees. However, there is one place where I've heard no discussion of sex: the Post-Polio bulletin board. There are lots of questions about PPS that you had the answers to years ago: Do I have ALS; does exercise make you weak; where can I get a scooter? But, not one question or comment about sex. I guess I shouldn't be surprised. Many of our patients at Kessler don't mention sex, either. Some mention that spouses do not believe that PPS symptoms are "real." But most often, spouses are very supportive about the need for their post-polio mate to slow down and take care of themselves, even if that means a new brace, crutches or a scooter. So, if spouses are so supportive, why is there no mention of sex? ALL'S TOO QUIET ON THE SOUTHERN FRONT There are probably several reasons for the lack of talk about sex: * Many polio survivors grew up in the 50's when discussing sex was the same as walking down Main Street without your pants. Also, 40 years ago, even more than today, people with disabilities were thought not to be fully human, let alone walking down Main Street without your pants. Also, 40 years ago, even more than today, people with disabilities were thought not to be fully human, let alone sexual beings. * Also, it was vital back in the dark ages that anything not "normal" (that is, anything not seen on Ozzie and Harriet) be hidden. So, if a polio survivor expected to have a relationship with someone the disability had to be hidden. Since the polio residuals were often hard to hide, the disability was often just ignored or denied. It amazes me still how many survivors tell me that they have never, ever discussed the fact they had polio with their spouse, let alone the experience of having had polio or - God forbid - their feelings about it. The process of hiding, denying or ignoring the reality of what's happening in one's body caused problems. Many people just turned off any awareness of their bodies and any feelings they have below the neck. Others have turned off ALL feelings, both below and above the neck. Since you can't turn off pain without turning off pleasure as well, an inability to feel will make sensuality or sexuality nearly impossible - or as appealing as eating dry toast. Also, walling off one's feelings also cuts off the ability to be intimate with oneself and with others. And, intimacy is the gateway to sexuality. * Having a visible disability at an early age can result in other barriers to intimacy and sexuality. There is a disturbingly high frequency of physical, emotional and sexual abuse among polio survivors. Nearly one third of the patients we treat have been physically or emotionally abused, and 25% of the women have been sexually abused. Not surprisingly, those who have been abused are much less likely to risk intimacy or be interested in sex. Also not surprisingly, the more obvious the assistive device people used following polio, the more likely it was they had been abused. No wonder polio survivors discarded their braces and crutches and don't want them back - ever! Now, 40 years later when PPS symptoms start and braces, crutches and wheelchairs are appearing again, the painful memories of the past and the reality of wheelchairs are appearing again, the painful memories of the past and the reality of disability can no longer be hidden. Old fears of unacceptability and new fears of rejection surface and cut self-esteem off at the pass. And, the old vicious Rules of Society also come screaming back: Rule #l: If you're disabled, you're not attractive; Rule #2: If you're not attractive, you can't be sexual; Rule #3: If you can't be sexual, you shouldn't have sexual feelings; Rule #4: Wear flannel pajamas and sleep on the couch. "IF I THINK I'M SEXY, AND I LIKE MY BODY..." Well, sexy is as sexy thinks. One of the disABILITIES bulletin boards is actually called, "Sex is 99% Mental." Sure you may not look like Cindy Crawford or Mel Gibson. But, how many non-disabled people do? What counts is how you actually feel about yourself, not how you look to others. If you're not acceptable to yourself, you won't be sexually available to or even intimate with others. The first step to intimacy and sexuality is recognizing and dealing with the emotional reality of the original polio and any abuse you have experienced because if it. Next, you need to identify your own negative feelings about yourself and stop projecting them into the heads of potential friends and lovers. Since a whopping 77% of polio survivors are married, it's your spouse's head that you're filling with your own negative thoughts about yourself and fears of rejection. Finally, if you turned off your body to stop feeling physical pain, you need the experience of good physical feelings. You need to decrease your PPS fatigue, muscle weakness, and pain by decreasing physical and emotional stress. Then, you muscle weakness, and pain by decreasing physical and emotional stress. Then, you need to start sending pleasant physical sensations to your brain. Try long hot baths, a whirlpool or, best of all, a massage. When you make nice to your body and good feelings start traveling to your head, other good physical sensations (like the erotic ones) will follow that "stairway (or ramp) to heaven." For those who are single, get a computer, a modem and start "surfing the net." It is actually possible to meet hundreds of people without leaving your living room. Whether you decide to let them into your life (or your bedroom), the safety of the computer gives you the freedom to be yourself and even practice being intimate with others, without worrying that everyone is looking ONLY at your brace. When all is said and done, here's the Golden Rule for being an intimate and sexy polio survivor (with apologies to Nike): Turn off your thoughts, turn on your body and JUST DO IT! ---------- The following short story appears in a different version in my book Finding Love And Intimacy SAFER SEX & "ACCESSIBLE" BIRTH CONTROL By Robert Mauro Today there are a number of reasons to protect yourself and your partner when deciding to say "yes" to sex. Besides not wanting to become pregnant, there is a need to protect both of you against possible infection from AIDS and other venereal diseases. It is your responsibility. After all, it's your life. The best protection against AIDS, VD or an unwanted pregnancy is simply to say "no" to sex. But if you don't want to do that, the safest thing to do is to stay with one partner whom you know is not infected. If you're unsure if your partner is free of AIDS or any venereal disease -- and you're afraid to ask, say "no" to sex or at least use a latex condom with the spermicide nonoxynol-9, which can help protect you not only against an unwanted pregnancy but also against a sexually transmitted disease. Condoms are not 100% effective, but, according to the U.S. Surgeon General, condoms are better than nothing. Okay. So you have found that special someone. You want to make love. But you are not ready for children. You need some safe and effective birth control, but you are afraid of the Pill and, because of your disabilities, neither you nor your lover can put on a condom or insert a diaphragm. The Norplant Implant might have the same side-effects as the Pill. These side effects are particularly dangerous to a woman who uses a wheelchair. There is a possibility of life-threatening blood clots. So what do you do? You must first find a doctor who has experience working with disabled men and women. Few have much experience treating disabled couples. You might want to talk with your local independent living center. Perhaps they know another disabled couple and, therefore, might be able to refer you to a sensitive doctor that that couple has told them about. After talking with each other and your doctor, you feel you do not want children, you might consider a vasectomy or a tubal ligation. But this is a big decision. Sterilization is for all intents and purposes permanent. Nevertheless, it is also 100% effective. Once it is done, you will be able to enjoy spontaneous sex without the fear of getting pregnant. Naturally neither a vasectomy nor a tubal ligation will protect you against AIDS, or and other sexually transmitted disease. But if you are involved in a long-term, monogamous relationship, you will not have to worry about AIDS or any STD -- so long as you're both faithful and both STD free. But what if you want to have children one day? In that case, you will have to consider a method of birth control. The Odds of Getting Pregnant According to various studies, no method of birth control -- except sterilization -- is 100% effective. Furthermore, if you use no method of birth control during sex, your chances of getting pregnant are 85%. Following is some information on the effectiveness and the side effects of various birth control methods, especially if you are a disabled person. The information was gathered from Planned Parenthood and the NATIONAL AIDS NETWORK. The Rhythm Method This is definitely the easiest method for a disabled person to use; however, it's also the least effective: 10 - 30 out of 100 women using it will get pregnant. Also, it is necessary to learn it from a doctor or a nurse practitioner. Moreover, you must totally abstain from sex for up to 2 weeks each month when using this method. Condom The condom if used properly has an effectiveness rating of 85%, i.e., it will produce a pregnancy in about 3 - 15 women out of 100; if the woman uses a contraceptive foam at the same time, those odds can be reduced to 2 in 100. The Surgeon General recommends using a latex condom with a spermicide. Never use condoms with oil-based lubricants, like Vaseline, baby oil or petroleum jelly. These oil-based lubricants can cause the condom to break. So be sure to use only water-based lubricants during intercourse, like KY Jelly. Also, the AIDS HOTLINE (number listed below) says you can contract AIDS by engaging in oral sex with someone infected with the virus. Therefore, the male should wear a condom and the female should used a latex shield. Some people have reported adverse allergic reactions to latex. Finally, and unfortunately, the condom is difficult to put on if you both have limited use of your hands. However, if it is to be used effectively, it must be put on correctly. Some couples have been able to put on a condom using one partner's mouth. But you must be careful not to tear the latex with your teeth. Foam Foam by itself is not very effective in preventing pregnancy. Used -- without a condom -- about 18 in 100 women will become pregnant. Also it may cause irritation to both the man and woman. It is somewhat easier than a condom to apply, especially if you have limited dexterity. But, once again, it must be used correctly. Diaphragm This must be properly fitted by a gynecologist or a nurse practitioner. It is very difficult to use if you both have limited use of your hands. If used correctly, about 4 - 25 out of 100 women will get pregnant. There is a slight risk of toxic shock syndrome and bladder infection. Moreover, the diaphragm can become dislodged, and, as a result, ineffective. IUD The IUD must be inserted by a gynecologist or a nurse practitioner. You need not -- and cannot -- insert it yourself. It stays in place for 1 to 3 years, depending on whether it's the copper or the hormonal type. Only 1 - 5 out of 100 women using the IUD will get pregnant. So it might sound like a great method of birth control for a disabled person with limited dexterity; however, the IUD has some dangerous side effects. These include pelvic infection, bleeding, and perforated uterus. The Pill The pill, not including sterilization or saying "no," is the single most effective method of birth control. Only .5 - 8 in 100 women using it regularly will get pregnant. However, never borrow birth control pills from a friend. They must be prescribed by a doctor for you. It is important to remember if you are disabled or if you smoke, the pill can be dangerous, especially if you use a wheelchair. Women who use wheelchairs have an increased risk of developing blood clots -- and the pill can increase your chances of developing these sometimes fatal clots. Blood clots and strokes, nausea and headaches, missed periods and mood changes are only some of the side effects. There is even a chance of heart attacks, bladder disease, and liver tumors. The Norplant Implant The Norplant consists of six small match stick-like capsules implanted under the skin of the woman's arm by a doctor. They release progestin, making the woman infertile. When the implants are removed, fertility is restored. The implant is as effective as the pill -- actually more effective, since you can't forget to take it, as you can do with the pill. The Norplant Implant has the same dangers and side-effects as the pill. Depo-Provera This is a shot administered to the woman by a doctor, usually every three months. It is theoretically more effective than the pill, since you cannot forget to take it -- as you can with the pill. Depo-Provera tricks the woman's body into thinking she is already pregnant. As a result, she can have sex without getting pregnant. Again, the injection must be administered every three months and the side effects are spotting, nausea, some weight gain, and some of the same side effects as the Pill. It is probably the easiest method of birth control for someone who cannot put on a condom or use a diaphragm. But you must consult your doctor first! Only he or she can tell you if Depo-Provera is safe for you. Studies have shown that this progesterone-based birth control method, and others using progesterone, might make the user more susceptible to contracting the AIDS virus. According to the studies, progesterone thins the protective lining of the vagina and makes it easier for the AIDS virus to invade the blood stream. The Female Condom The Reality female condom is now available from Planned Parenthood. It's effectiveness rate in preventing pregnancy if used correctly is 74% as compared to an effectiveness rate of 85% for the male condom. The female condom fits loosely inside the woman's vagina. The outer rim remains outside. Next to the Depo-Provera shot, this may be the easiest method for persons with limited dexterity. Men prefer it to the male condom, which tends to dull physical pleasure for the man, and tends to make it very unpopular with them. However, women have not yet been heard from on whether or not the female condom dulls their pleasure during intercourse. In the Future A number of new birth control devices are being developed. But not as many as we need. Some new birth control products will be coming on the market. One of these is the T380A IUD. But before you can use it, both you and your doctor will be required to sign multi-page release forms. The Prentif Cervical Cap can be worn by the woman for up to two days. But it is more difficult than the diaphragm to insert. The once-a-month pill, the male birth control pill, easily reversible sterilization, even the male sperm shocker implant are coming out. Other methods are still in the future. But they, too, may be a possible choice for disabled lovers someday. Experimentation is even going on, and has been going on now for years, on a male contraceptive injection, which can be given once a week by the male or by his partner. In nearly 800 men who have used it, only one of their partners has become pregnant, and this was questionable. Moreover, with the male contraceptive injection there have been little if any side effects. One side effect appears to be slight weight gain. But the long term effects are not yet known. The Best Method for You The method you choose is up to you. According to Johns Hopkins University, sterilization is the most common form of birth control, followed by the birth control pill. Sterilization, as I said before, is not safe sex as far as contracting AIDS or VD is concerned. You'll still need a latex condom with nonoxynol-9 to help protect yourself against both of them. Only the latex condom with nonoxynol-9 will help prevent the spread of AIDS and VD. You should also remember that when released by just one orgasm, there are 500 million sperm just dying to cause a possible unwanted pregnancy. Therefore, before you say "yes" to sex, know what your options are. Remember, intercourse is only one method of enjoying an intimate relationship. You can still hug, kiss, cuddle and do other things to fulfill each other's needs without actually "going all the way." For more information, call your local family planning center, Planned Parenthood, go to your local book store or library. There are now a number of books on safe sex, AIDS, and birth control. But what I still want to see are books on accessible birth control methods for the disabled. If you know of any books like that, please let me know. Information on Aids If you have questions about AIDS, there are a number of sources you can get free information from. One source is a book by Dr. Art Ulene called SAFE SEX IN A DANGEROUS WORLD, UNDERSTANDING A COPING WITH THE THREAT OF AIDS, published by Vintage. It cost $3.95. In it Dr. Ulene explains what AIDS is, how it's spread, safe sex and almost safe sex, how to pick a safe partner, what an AIDS test is and how accurate they are. You can also dial the 24-hour-a-day, toll-free AIDS Hotline number and listen to taped recordings about AIDS. You can even speak to a counselor for free. You need not give your name. The number is 1-800-342-AIDS, if you speak English. The number for Spanish-speaking persons is 1-800-344-SIDA. The Deaf Access number is 1-800-AIDS-TTY. If you want printed information, you can request it by writing NATIONAL AIDS NETWORK, 729 Eighth St., S.E., Suite 300, Washington, DC 20003. Or you can ask someone at the AIDS Hotline, at 1-800-342-AIDS, to send you all the free information you need. If you'd like information on other sexually transmitted diseases, you can call the National STD Hotline at 1-800-227-8922. I hope that helps you have safer, happier sex. For more info, contact Planned Parenthood. ---------- WHAT IS REAL CRIP SEX By Robert Mauro Real crip sex is simply sex. It's real sex, not something less than sex you have to settle for because of your disability. Real crip sex is a full, fulfilling sexual experience -- complete with orgasm, whether those orgasms are physical or emotional or both. The feelings are filled with the pleasures of intimate closeness, release and the warmth of passionate love and desire. Too often too many people assume men and women with disabilities cannot enjoy sex. But just like anyone else, we have sexual feelings and sexual needs. Our disabilities do not destroy our desires for a full life both in and out of the bedroom. I talk about what real crip sex is in my Real Crip Sex booklet. In that very erotic and very explicit adult publication, I discuss sexually pampering each other, the sexual language of love, sexual positions for the severely disabled, what men and women love in bed, sexual fantasies and much, much more. You might want to read it. Because of our disabilities, we may need to find the right sexual positions for us. How we respond to sexual stimulation might be different from a nondisabled person. Your erogenous zone might be an elbow, the back of your neck, or your left knee. You need to take time to explore your body with your hands and with a lover. You need to teach a lover how to please you in bed. The one who loves you will want to know your most sensitive, erotic spots. You might also want to use some sexual toys or erotic aides during your love play. Things like vibrators, adult videos, and lotions might help you enjoy sex much more and much easier. You can buy these items through the mail from several companies. I'll mention one here, but you can find three others in my Real Crip Sex booklet. If you're looking for ways to adapt a vibrator if you have manual dexterity problems, you might want to send for The Lawrence Research Group's Special Edition Catalogue for Disabled People, POB 319005, San Francisco, CA 94131. This catalogue is specifically for the disabled and cost $4. The $4 is credited to your first purchase. And make sure you say you want the special catalogue for the disabled. As I said, there are three other companies, not specifically for the disabled, with sex catalogues, but you'll have to order my Real Crip Sex booklet to find out about them. The sales of my books and booklets are what help pay for this home page. FINDING LOVE & INTIMACY: Poems, Short Stories & Articles on Relationships for Disabled Singles is one of my books published by Accent. It might help you find your special someone. It is a compilation of the best articles, short stories and poems from the first seven years of my former print version of PeopleNet. For your copy, send $8.95 in check payable to Robert Mauro to PeopleNet, POB 897, Levittown, NY 11756-0911. You might even want to subscribe to It's Okay magazine, which is all about sexuality and the disabled. You can find info about It's Okay under my How To Get Personal section of my home page. If you want to learn more about your sexuality and that of other disabled persons, a great book to read is ENABLING ROMANCE by Ken Kroll, who uses a wheelchair as a result of Dystonia, and his wife, Erica Levy Klein, who is not disabled. It was published in 1992 by Harmony Books, the Crown Publishing Group. You can find it in most libraries and bookstores. Another book is THE ILLUSTRATED GUIDE TO BETTER SEX FOR PEOPLE WITH CHRONIC PAIN. It's a small, 37-page book on how someone with chronic pain can make love. Various sexual positions are illustrated in graphic pen and ink drawings. Helpful advice on living and loving with chronic pain is offered by the authors Robert W. Rothrock, PA-C, and Gabriella D'Amore, PA-C. The price is $8.95 plus $3 for shipping and handling. But you can always get your library to order it for you and your community. Definitely a good idea! You can order a copy of THE ILLUSTRATED GUIDE by writing Director of Sales, 201 Woolston Dr., P.O.B. 1355, Morrisville, PA 19067-0325. Or by calling 215-736-1266. As you read these books and my book and booklet, you'll learn that there are many ways to enjoy sex despite our disabilities. Whether you are alone or with someone you love, whether you are gay or straight, you'll see that where there is a will, there is a way. You just have to keep trying. Trust yourself. Trust your feelings. Never give up. One thing that is certainly true about real crip sex, or any sex, is that it takes time, patience, and perseverance to find a fulfilling sexual love life. You have to believe in yourself, and in your body. As disabled as you might be, in your mind you are perfect. And in the eyes of someone who loves you, you are beautiful and desireable. You must learn to love yourself and love your body before anyone else can love you. That's really what real crip sex is all about! ---------- SEX WITH A DISABILITY: CAN WE TALK By Robert Mauro So what about having sex when you have a disability. Why should it be any different from having sex without a disability? I guess that depends on whom you're having the sex with. And who is or isn't disabled. Do you think some nondisabled or even disabled persons might be fearful of getting sexually involved with someone who is disabled? Some nondisabled women have told me they were afraid they would devastate the disabled person if after they had a passionate sexual relationship with him they decided to leave their disabled lover. Others think they might hurt or "break" the disabled person with their passionate sexual activity. And I've even heard this from disabled persons who are LESS disabled than their disabled friend, who might have been their lover. What the heck is this all about? Then there is our fear. How fearful are we, as a lover with a disability, of getting involved with someone after we've been dumped or had a sexual relationship end badly? And is that feeling of fear any different from the fear a nondisabled person feels after they've been dumped? I think not. What do you think? Let me know at mauro@idt.net. My feeling is people, disabled or not, have to get to know each other before they become lovers. And, yet, I wonder if after they do become friends, one or both of them might become fearful of adding a sexual component to their presently platonic relationship. In other words, will the sex screw everything up. Forgive the pun. But a little humor never hurts when it comes to love and sex. Ah, so that's where that big smile comes from! Then I see a report on NBC news about college students thinking dating on campus is like totally square. Sex is in. One night stands are now all the rage with both college men and women. Some college women interviewed said they enjoy the no-strings-attached sex. Men, of course, have no complaints. Meanwhile, couples on campus who become friends and lovers and "date" or "go steady" are derogatorily referred to as "the Velcro twins." I'M CONFUSED...although I use Velcro! Okay, so what the heck is going on? What do you think? Is it fear of commitment? Fear of rejection? Or are people just testing the waters? Or just diving in? I'm barely floating here! Anyhow, let's take a few steps back and begin at the beginning. You're already a lover. And you're not yet disabled. Before you become disabled, you may have developed a sexual routine with your lover. You and your partner, over time, have found what each of you likes in bed, and those are the intimate things which have become the whole gamut, the full spectrum, of your love making. Then one of you becomes disabled. Because of that disability, the newly disabled partner might no longer be able to sexually perform the way he or she used to during sex. And if the lover with the disability cannot do what the other person has grown to love done to him or her in bed -- be that person disabled or not -- some lovers may want out of the relationship. Moreover, no matter what you want to try sexually to improve your partner's enjoyment of sex, he or she may simply not be willing to try something new in bed, whether that be oral sex, a vibrator, or a drug to help with erections. Your sexual partner may still want what they used to enjoy, before you became disabled. Another problem is your nondisabled mate might be afraid of hurting you by having sex with you. That's something you have to talk to him or her about. You won't break. You can still enjoy intimacy. You have to tell your lover that. Of course, he or she may not want to listen. When you are born with a disability, or find a new lover after you have already become disabled, that preestablished sexual routine I talked about above is not yet there. It hasn't yet been established by you. You, as a couple, have no past together. So you simply make love with your new partner in ways you can with your disability. Your lover either likes those sexual acts or doesn't. If he or she does like them, the relationship will continue. But there's no guarantee that any sexual relationship will endure. It all depends on the lover you are with -- and what he or she likes about your sex play. And you. Your looks. Your personality. A few men and women may even be willing to adapt to your sexual abilities, especially if they love you for more than just your sexual abilities. Can the person you are attracted to change the ways he or she may have enjoyed making love before meeting you? Or does your new lover enjoy the sexual relationship he or she is having with you because you're making love the way he or she always liked it? By chance you just happen to be on the same sexual wavelength. Ah, that's the question! No one wants to make love the same way every time. And during a sexual relationship, you or your lover might read about a sex act or a sexual position you haven't yet tried and suddenly decide you now want to try it. Books like ENABLING ROMANCE or my very sexually explicit booklet REAL CRIP SEX are especially geared to lovers with disabilities. Moreover, people change. What a lover likes can change over time. Few things stay the same forever. But what if you can't change because of your disability? What if you don't have the athletic ability to perform a new act? What if you just don't like that particular sexual act or position? What if your lover doesn't? But you do? I think the problem here is not so much the disability. But the sexual likes and dislikes of the lover you are with. Everyone is different. Lovers have their likes and dislikes. And if you have not become disabled in the middle of a relationship, but have always been disabled (at least before the relationship commenced), there's still a chance you might not be able to do something sexual your lover suddenly decides he or she would like done to him or her. At that point, the sexual relationship can fall apart. But, as I've said, there's no guarantee any sexual relationship is going to last forever. When you get right down to it, your disability should not be the only factor in any sexual relationship. A good sexual relationship needs what I call the Four T's: Time, Trust, Trying, and Talk. If one of you refuses to take the time to talk about what you love in bed or the time to try different ways of making love, and if you don't trust your ability to please a lover or your lover doesn't trust your ability to please him or her, it's time for the Fifth T: Termination. End the relationship and look elsewhere for someone to love and love you. Life is too short to rack your brains to stay in a frustrating, loveless relationship. Sex certainly is part of love. It bonds a couple together. It is more than just a lot of heavy breathing. And it is as natural as breathing. Sadly, some people are just not willing to take a deep breath and explore the joys of sex with someone with a disability. Those who do usually are surprised by the time a lover with a disability takes to please his or her partner. We disabled folks have learned to take our time in all things. We have learned the ABCs of SEX! We also know how precious love and a sexual relationship can be. And few of us who are disabled would just use someone in or out of bed. Many of us -- with or without a disability -- need time to feel at ease with others, especially with a lover. Whether we are disabled or not, few of us are ready to bare all, especially our bodies, to someone -- unless we trust the one we are with. So what can we do as disabled men and women to find someone to love? My feeling is we must be honest about our abilities. We have to let others know we are just as sexual as anyone else and just as able and as eager to please a lover in bed. And out of bed. How do we do that? It takes time, trust, trying, and talk. So...can we talk? ---------- SEX & RESPIRATORS By Robert Mauro Yes, you can make love to someone who uses a respirator and that person can make love to you. It just requires planning, trust and love. As someone who has used a respirator since 1970 as a result of post polio syndrome, I have made love and been made love to. It's not easy to find someone to love, but a few times it has happened to me. And love in the 80's and 90's was wonderful! When I'm with someone, I like to tell my lover she really takes my breath away. That will usually make her smile and helps us both relax and enjoy the moment. But everyone who uses a respirator is different. So you have to work the kinks out, both before and after you're in bed. When I say "work the kinks out," I don't mean the kinks in the vent tubing, although that tends to get tangled up in the heat of passion. By working the kinks out I mean those "kinks" in someone's head, the "kinks" in your or their thinking, especially in how the person on the vent is perceived. And how he or she perceive him or herself, if that person uses a vent. The key is never to feel your love life, your sex life, is over because one of you needs assistance to breathe. It is not! Because of your disability, you might not be able to be as athletic in bed as a nondisabled person. True. But not everyone wants an athlete. Some do. Others do not. Find someone who is more your speed. Okay, take a deep breath. We're ready to work out those kinks! What can you do if you have a tracheostomy? Well...how does your tongue and mouth work? Have you tried oral sex? Hey, just use what does work. Fingers? Toes? An arm? A leg? Words? If all you can do is talk, spin a sultry, sexy fantasy as your lover masturbates beside you, holding you. You can give pleasure in many ways: physically, emotionally, verbally. The real turn on is your desire to give that pleasure to the one you love. You are giving your lover the acceptance -- the total freedom -- he or she needs to feel free, to be as sexy as he or she wants to be, with you there to cheer him or her on, to give what you can to the experience. There are no specific musts. You do not have to use oral sex, masturbation, or intercourse to love or be loved by someone. You just have to be there. To listen and do the best you can do. Discuss what you or your lover likes. It may not be just the act of sex. It might just be the closeness you can share in and out of bed, dressed or undressed. Some of us on vents do not have a tracheostomy. I use a mouthpiece. Those of us who use a mouthpiece, can usually take it out to talk, kiss, lick, suck, and nibble. And even use our hands and fingers to please. If you cannot be without your vent for more than a minute or so, especially when you are into heavy breathing, guess what, when your tongue or mouth isn't licking or sucking your lover into ecstasy, you can use your fingers or even a small vibrator. Or a BIG vibrator! Ask your lover what he or she likes. Or BYOV, bring your own vibrator! Take the time to play with your lover. Tease him or her. Use the vibrator, use your fingers, use your mouth and use your tongue where your lover loves them most. Ask him or her where those hot spots are. Or just go happily exploring together. And be patient. Both of you. Take time to find just the right pleasure spots. Ask your lover for feedback, a little moan or a yesssss when you're on target. That alone can add excitement to your love making. If you use a respirator, you have to talk about your limitations and your abilities. Both are important. Despite your vent, you have many sexy qualities. Too often those of us who use a vent are seen as too disabled for sex. Not true! Simply because our breathing muscles need help, doesn't mean our love muscles don't work -- or that our ability to be wonderful lovers is nil. Again, everyone is different. If you have a disability which has effected your ability to lubricate or have erections, you can use K-Y jelly and a vibrator. Even a dildo, if your lover likes that. Talk it over. Don't just give up without trying. Now...what about intercourse. The biggest problem some of us on a vent find is simply trying to keep our vent tubing from getting tangled up in our arms and legs. The other trick we have to learn is timing, i.e., working out just when to kiss and when to suck in a breath. Or when to suck on him or her and then suck in a breath. Confused? Who cares! This is fun! You can work out the timing together. Before you know it you'll get to know just when to kiss, suck, lick, nibble, and when to breathe. Or to just cuddle. It's like chewing gum and rubbing your tummy at the same time, but much more pleasurable -- especially if you're rubbing your lover's tummy, or a much more erotic place. One thing I have learned: if you love each other, you'll take the time to help each other work out all the sexy details. In fact, one of my former lovers would even hold my respirator hose as I made love to her, giving it back to me as needed. She knew me well after a while, and vice versa. Everything became second nature. She also loved to cuddle as I rested and caught my breath. For that, I adored her! If you use a vent, you have to assure your lover you can please them. And that they can please you. As you get closer, more intimate, more trusting, you can tell him or her exactly what you can do. But by then, you'll probably be in bed showing your lover what you are capable of. You might even find out that there are a few things you can do that you never realized you were capable of. If all this sex play takes your breath away, smile, you're just having more fun in bed. And guess what -- so is your lover! ---------- STAND BY YOUR MAN/WOMAN? By Robert Mauro When should you leave a relationship or a marriage? Or stay in one? That depends on why you are in the relationship in the first place, and what you expect from it. Are you in the relationship or the marriage for love? For security? For sex? What is making you want to stay in the relationship or leave it? Has your mate become more disabled? Are you bored? Do you feel trapped? Have you become more independent? These are all important issues. But the final decision for staying or leaving needs to be made by you. After all, it is your life. And the last thing you need is anyone telling you what is best for you, especially someone not in your shoes -- or not in your relationship. One of the things in a relationship or marriage which might change as we age or as our disability progresses and we become less able to participate in sex than we once had, is our ability to sexually satisfy our lover. Of course, there are always ways we can adapt the manner in which we share sex. Nevertheless, if these adaptations still do not satisfy your partner, what do you do? Or what does the unsatisfied partner do? One couple I know of mentioned letting the nondisabled spouse have affairs outside of their marriage to satisfy the nondisabled partner's sexual needs. The disabled partner did not say no to this, but did not like it. Another disabled person questioned this arrangement, asking if it wasn't really just a way for the nondisabled partner to stay in one relationship while exploring other partners until finding one he/she liked and then abandoning the disabled spouse. One disabled person said as long as you have a mouth and a tongue, you can satisfy a lover. But what if the lover wants hugs? Or intercourse? Or more athletic sex? Again, everyone is different and no one can say what is right for anyone else. What we can say is that we all need to be honest. We cannot delude ourselves into thinking looking for sex outside a relationship won't hurt anyone. Similarly, we can't say that it will. Again, everyone is different. So only the couple involved can decide what is best for them. I also think we cannot say it is wrong for one couple to stay in a relationship we (who are not in that relationship) don't agree with or think is a good one. What is not good for us, might not be unsatisfying for someone else. People stay in relationships for many reasons, and sex is only one of those reasons. Some stay married or together because of similar beliefs, a feeling of family (even in a non-marital relationship), security, friendship, even love (which might not have anything to do with sex). Some people leave a relationship because it might have just been based on sex or security and when the sex gets boring or becomes unsatisfying, and the person becomes more independent, that partner leaves. Indeed, if someone becomes more independent, employed, better educated, has their own health insurance, they might leave a relationship which had previous supplied those needs -- which that person felt were vital. Actually the best relationship is one where neither person needs anything from the other, not money, not security, not shelter, not sex, not physical caretaking. Rather they are together because they want to be. Not because they need to be