We’re not all the same; we’ve just filled many pages counting the ways that each of us is unique. But there’s another area of diversity to address when we discuss sex, associated with the ways, and limitations to the ways, our bodies function. We’re talking about disability and differing kinds and levels of ability. Many people think these are synonymous; although they can be, some disability community members and advocates differentiate them: Disability refers to an acquired change in function from an accident, an illness, or other life- and ability-altering experience, while the phrase “differently abled” may be used for someone who has had different bodily configurations or abilities from birth, and who has grown up with them. In the first case, a person must learn their body and its abilities and responses anew. In the second, a person will have had no experience in a body other than the one they’ve always had—it’s simply the way they are.
Over time we will almost all undergo changes that cause our bodies to lose certain abilities or behave differently. So even if you consider yourself perfectly healthy, be aware that someday it’s as likely as not that you, too, will be disabled; even if it’s just for a short period, it will change your world, and it may very well lead you to see your sexuality, and many other things as well, through new eyes.
“It took seven years of working with my partners to rearrange my sexuality into a functioning structure,” said one man who was disabled by chronic pain. “But I constantly miss my old preferences. I do have an acknowledged disability, called ‘loss of ability to engage in sexual congress.’ But that doesn’t acknowledge at all many of the sexual things I can’t do any more—it only refers to intercourse.”
In either case, acquired or inborn, if you are a person with a disability or differently abled, you may have noticed that other people are to varying degrees supportive or else have difficulty dealing with your difference from the “norm”—hence the limited “sexual congress” definition above—and this can have subtle or significant effects on the way you’re treated. Sexually speaking, you may not even be seen as having erotic needs and physical capabilities. Some activists are working for better access to support and information regarding all things sexual for people with disabilities. This is a particularly challenging issue in the cases of developmental, intellectual, or “invisible” disabilities like traumatic brain injury or epilepsy.
In other cases, the sexual capacity of a person with a disability might have been eroded by the physical changes that come with their disability—this is especially true in cases of illness or injury—and the biggest challenge is re-learning what your body can do and feel.
At this point sexologists step in to say that the sexual experiences of the differently abled and people with disabilites have much to teach everyone. For one thing, as noted above, each person who is not at this moment disabled can be thought of as temporarily abled—some may be rendered disabled later, so disability rights and issues are relevant to all of us. In addition, we’ve learned a lot about the erotic potential of the body and brain. People whose spinal cords have been severed can still experience orgasm via stimulation of the earlobes or face; some individuals affected by neurological difficulties like fibromyalgia may not be able to tolerate light touch, but find some BDSM practices bypass that sensitivity and give them great pleasure. The differences among people with disabilities and differently abled people may be the source of ongoing scientific discovery about all of our bodies and the way they function.
Even in the here and now, the ways people experience and explore their sexuality can give all of us a hint at the varying ways to find and savor pleasure. There is no one single “normal” way for a body to be configured or to respond sexually, and any person, in any body, can find ways to feel pleasure and intimacy if they want to—especially if social barriers are removed. This also means that if you’re temporarily abled and find yourself attracted to someone whose abilities don’t match yours, your journey of exploration with them may be different than it would be with a partner who has a more conventional physicality—but we are all different, and it is always a journey.
The phrase “altered function” is used in a health care context; though it’s relevant to much more than disability, that phrase carries an expectation of a status quo, as well as a change to it. This could be the prior state of a person with a disability, which has been altered by illness or trauma. It could also refer to a social status quo that people with disabilities aren’t perceived as meeting. We must be vigilant for signs of “ableism” here, because where there’s ableism, there’s often discrimination and bias. Not only that, but ableism carries with it a sometimes profound inability to acknowledge the ways in which people with disabilities may have had to learn more about the body than many “able” people. Disabled sexologist Robert Morgan Lawrence notes, “Disabled folk often consider other disabled folk as better partners because of their ability to identify patience, difference and the definitions of what sex is as a creative process. We are sexual, even if some people don’t have the skill to identify what we do as sex.”
One source of altered function, ironically, is the medication that some individuals are prescribed by their doctors. While these may be required to maintain functionality, they can also change it—when it comes to sex, sometimes for the worse, as when medication causes sexual side effects like troubles with arousal or orgasm, or blood flow, fatigue, and problems like stomach aches, constipation and acid reflux, which can affect positions and comfort levels. Meds can also react synergistically to cause problems—and even trips to the emergency room. Every person should speak to their doctor and caregivers about pharmaceutical side effects of each medicine on its own as well as in combination with other drugs. If you have more than one doctor prescribing medication for different ailments, make sure those docs are put in touch with each other and that each knows what the other is prescribing. Also, don’t be shy about asking your pharmacist to double-check this.
We don’t have enough space in this book, in which we are trying to cover most bases of sexuality, to go into great detail about all the various kinds of disability and their sexual repercussions. However, there are particular disabilities that have more or less predictable effects on sexual functioning; we’re going to briefly look at some of these here.
Spinal cord injury: The spinal cord is the superhighway that sends nerve impulses from all parts of the body to the brain—and back again. These impulses are responsible for virtually all bodily movement and sensation, so when the spinal cord is injured, everything below the site of injury can be affected. Sexual as well as mobility effects are common, and mobility can in turn affect a person’s sexual abilities, such as what positions they can assume and whether they can hold and use a sex toy. Spinal cord patients can find that other parts of their body become highly erotic, even if the genitals no longer feel sexual sensation.
Cerebral palsy: Often called CP, this usually appears at birth or early in life, and can result in movement disorders, unusual posture, stiff or floppy limbs, and issues with coordination. It can (but doesn’t always) affect intellectual function and speech. It doesn’t generally worsen over time, however, as some disorders do. It doesn’t always directly affect sexual functioning (except, sometimes, posturally), but some people with CP experience chronic pain, and there is some incidence of genital numbness or altered sensation. Some may also have a hard time holding sex toys, effectively touching themselves during masturbation, and finding a comfortable position.
ALS (Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease): ALS affects the brain and spinal cord’s motor neurons, which gradually die and can progressively affect muscle function and movement. ALS doesn’t directly cause sexual dysfunction, but can alter the body in significant enough ways that sexuality is impacted—by weakness, body image issues, muscle pain and loss of control, and other effects. ALS in its advanced stages becomes a mobility issue if paralysis sets in. As with CP, hand grasping can be affected with both sex toys and directed touch.
Multiple Sclerosis (MS): An autoimmune disease that involves the breakdown of the nerves’ insulating myelin sheaths, MS can affect both functioning and sensation. Sensory changes can include genital numbness, pain, or an increased sensitivity that’s not at all erotic. Erectile, orgasm and arousal problems, decreased vaginal tone and lubrication, and problems with fatigue, muscle spasms, and bladder control can also affect sex.
Some ailments or physical changes/differences that result in mobility impairment do not cause direct sexual problems or even pain, but can cause difficulty moving from a wheelchair (if the person uses one) to a bed, lying down, or other positional changes that affect a person’s ability to have sex. Sometimes these conditions, regardless of their cause, can also make it difficult for an affected person to move their hands and arms, which may even affect their ability to masturbate. Many people with mobility-related issues have the support of a caregiver, sometimes a family member but often someone who is hired to support the person’s access to meals, travel outside their residence, bathing and other hygiene, and so forth. When a caregiver is also a sexual partner, sexual access may be arranged relatively easily, but an ongoing discussion in the disability, medical, and caregiver communities is how to support a person’s sexual needs especially when they have no partner.
Some illnesses and disabling conditions, including problematic outcomes from bowel or bladder surgery, affect a person’s ability to control feces or urine. It’s always a good idea to empty bowel and bladder before a sexual encounter, and afterwards too, since urination helps maintain urethral cleanliness, especially important after sex involving penetration for all people. People for whom incontinence is an issue can use disposable pads underneath them when they have partner sex or masturbate.
Pain can be a result of accident, degenerative conditions, as well as an effect of drug withdrawal and many other health problems. It can sometimes even be an after-effect of surgery, which we think of as a fix for pain. In most cases the pain is not specific to the genitals (or even felt there); in fact, many people find that sexual arousal and orgasm help alleviate chronic pain. Not all pain is the same—the muscle pains of fibromyalgia are likely different from those of a person suffering from a musculoskeletal injury. In the former case, warming up and stretching might help more, and in the latter case, the body’s position might make more of a difference. A fibro patient might not be able to tolerate certain kinds of touch, and is likely to have flare-ups during which pain symptoms are increased. Rheumatoid conditions (including rheumatoid arthritis and lupus) attack the body, especially the joints, with painful inflammation, and this has further implications for positioning, grasping, and so on.
Pain medications are part of managing disabling conditions, but can be a double-edged sword; besides side effects that can include nausea and headaches, opioids can themselves be associated with sexual dysfunction, possibly because long-term use disrupts the body’s endocrine system. Their use can also lead to addiction and other undesirable physical changes, including constipation, itself not exactly a pro-sexual condition! At least one study has also linked commonly-used non-opioid pain meds, the NSAIDs (non-steroidal anti-inflammatories) with erectile dysfunction, and anything that results in erectile dysfunction in people with penises may also cause arousal issues in people with clitorises. NSAIDs are one problem; steroid use, too, is associated with sexual problems, including the kind of anabolic steroids that might be used outside a medical context—in athletics, for example.
Multidisciplinary pain management may include pain medications including medical marijuana, physical therapy, and avoiding pain via positioning and body movement strategies—clearly these can be relevant to sexual functioning—plus psychotherapy. Because chronic pain can cause depression, the decision may be made to add anti-depressants to the mix, though it should be remembered that this category of medication often results in sexual issues too, and it’s worth asking whether depression resulting from a clear, perhaps temporary, life experience—illness, loss of a partner, family member, pet or job, etc.—is in fact comparable to the brain chemistry imbalance that these meds were developed to treat.
Many kinds of organic illness can affect our sexuality. Cancer can affect genital organs and other parts of the body that are relevant to sex, including the uterus, ovaries, penis, testicles, prostate, anus, mouth and throat, and breasts; cancer treatments can be invasive and both these and the cancer can cause significant pain and fatigue, so a person with cancer has a good chance of having their sex life affected in one or multiple ways. Body image can change with cancer treatment, including its effects like hair loss and mastectomy. A cancer survivor’s partner can also be affected, sometimes losing their willingness to stay sexually connected to the person with cancer.
Heart attack (or an ongoing heart condition) can affect not only a person’s ability to exert themselves, as some sexual play requires; it also can, ironically, impair people (including partners) via fear of such exertion. As Boston Scientific notes, many people climb stairs without worrying, but are deeply concerned about resuming their sex lives after a heart attack. (A person who does have trouble climbing stairs should be cautious about resuming intercourse; according to the American Heart Association, other heart patients have no increased risk.)
Cystic fibrosis is an inherited disease that affects the secretory glands; it is perhaps best known for its effects on breathing, though it can affect other organs as well. Other pulmonary issues that affect breathing include COPD (chronic obstructive pulmonary disease) and emphysema, polio, MS, and certain other conditions. The sexual response cycle can make breathing faster and/or deeper, so while these ailments may not directly affect the genitals at all, sexual abilities can still be impacted.
Diabetes is related to one’s ability to process blood sugar. What makes it an ailment related to sex and disability, however, is its effects on the circulatory and nervous system. Physical arousal is associated with healthy blood flow, especially to the genitals and to neural responses. Both of these can be impaired in advanced or untreated cases of diabetes, and erectile and orgasm problems can result.
Mental health issues can impact desire, arousal, emotional experience, and the formation of partner bonds, and pharmacological treatment of mental illness can cause significant sexual problems as well.
As with developmental or intellectual disabilities, certain mental health issues may render a person unable to give consent.
Vulvodynia is chronic vulvar pain. This can be generalized, or specific to the introitus (entrance to the vaginal canal); called vulvar vestibulitis, this is burning pain or unpleasant sensitivity at the vaginal opening, or vestibule. In either case, the pain may be constant, intermittent, or associated with touch or certain kinds of sexual activities, such as intercourse. It’s not clear what causes this syndrome, if, indeed, any one thing does. Not all health care providers are knowledgeable about vulvodynia, and a person dealing with it may need to seek a doctor who does know about its treatment. Coping with this condition involves identifying any triggering activities or substances; avoiding pressure on the vulva; relieving pain through heat, cool baths or cold packs, relaxation, and medications; and physical therapy to work with pelvic floor muscles or controlling sensation via biofeedback. If vaginal ailments like yeast infections or vaginitis are the cause, treating them is important, but pay attention to any indications that you may be sensitive to the medications used to treat these conditions.
Surgery can be suggested as a treatment for vulvar vestibulitis. However, it’s important to work with a health care provider who knows about the condition and is open-minded about treatments. One women’s care organization, for instance, has seen cases of vulvar vestibulitis in women who are dehydrated; are having intercourse when insufficiently lubricated; have allergies or sensitivities; and who are dealing with significant stress. We always suggest the least invasive and most holistic ways of dealing with a health issue.
Vaginismus is vaginal pain, specifically that which occurs from an involuntary spasm of the vaginal muscles, often when penetration is attempted. It’s associated with anxiety—understandably!—but it’s not known which causes which. It isn’t psychosomatic: even if it has an emotional cause, in whole or part, it does involve an uncontrollable muscle spasm. But pain or discomfort may cause the spasm; some people with vaginismus have untreated vaginal infections. Kegels and desensitization, support in saying yes and no to penetration, and using graduated-size dildos can help with this condition. And of course it’s important to treat any underlying physical cause and, if a history of abuse is part of the equation, getting help for that can also make a difference.
Crotch injuries can occur in people of any gender. Bicycle or motorcycle accidents that result in a person hitting the bike’s central bar are a common cause, but sports injuries, kicks or other impacts can also result in crotch pain and sexual dysfunction. One prominent erotic star of the 1990s was open about having sustained such an injury, which left her unable to orgasm via clitoral stimulation and more interested in vaginal stimulation. Nerve damage can result from this type of accident, and chronic pain is a possibility as well.
Erectile dysfunction isn’t always a disability per se, but it can definitely be an adjunct to some disabling conditions and illnesses. In some cases, the Viagra/Cialis/Levitra family of drugs can restore erectile functioning, but other people may use a medically-prescribed penis pump like the Osbun Device, others use an injected medication called alprostadil (Caverject), and some opt for a penile implant.
A number of years ago the Kinsey Institute released the results of a study they’d done asking US residents where they would go for sex advice and help if they needed it. Many sorts of helping professionals were cited, from sex therapists to pastors. But more than any other source of support they’d rely on, respondents said they’d visit their doctor.
Perhaps since then, with the advent of readily available information on the Internet, people are solving their own sex dilemmas—and hopefully they are accessing correct information. But we are left with the impression that many people continue to rely on their physician’s know-how, or at least they would if they could get up the nerve to ask about sex. More recent research has suggested that patients may be waiting for their doc to bring it up, and if your doctor never asks you about your sexual functioning, they are losing out on an opportunity to not only help you make sense of any sexual issues you may have, but also to evaluate your overall health through the lens of your sexual response. Many of these silent docs, it turns out, are waiting for their patient to bring up the topic.
No matter what your age, relationship status, or sexual orientation and interests, you should be able to speak to your physician about sexuality and gender identity without fear. If your health-care team is anything other than professional about these discussions—if they are homophobic, for example, or refuse to believe the bruise on your butt was the result of a much-desired, consensual spanking and not abuse—you deserve a different medical experience.
From one viewpoint, it is not your doctor’s fault. Your doc likely grew up in the same culture as the rest of us, and got no better basic sex education than you or I. And the sex education may not have been much better in a rigorous medical school curriculum. Many doctors get very little training in sexual and gender issues unless they are specialists, and much of what they do get has to do with reproductive issues. You’ll notice that this is one common aspect of sex that we barely cover in this book, because there is much greater focus on it out in the wide world. If you have a fertility or contraceptive question, your doctor can likely do a good job helping you; we’ll add some resources in our For Further Reading section too.
But let’s say for the sake of argument that you do have a problem talking frankly and comfortably with your doctor. If you’re too reticent to do the talking, please take responsibility for this and find a way to ask your question! Write it down in advance if you need to, or enlist a friend or partner to go to the doctor with you and help you get the words out. Your physician is not a mind-reader, and they cannot just look at you or check your blood pressure and know for sure that you’ve been having erectile problems lately or your orgasms have stopped feeling as good as they used to.
If it’s your doc who has the problem, you have two choices: Find a new medical care team! A doctor (or office staff) who cannot behave in a professional manner does not exactly deserve your business. But if you value them in every other way, you can choose to communicate clearly about your disappointment, and educate them as to your sexual or gender identity and your needs. Of course not everyone is up for doing this—and it should not have to be your job. In a perfect world, the sexuality and gender curriculum in every medical school would be diverse, sex-positive, and thorough. But until that day, people learn when they have to learn and, sometimes, when they are asked to learn. If you are frank with your doc about the ways you expect to be addressed and the kind of information you need your health care team to have, you will be helping future patients too. For a thorough and empowering discussion of our communication with our doctors, sexologist/MD Dr. Charles Moser’s book Health Care Without Shame is a must-read. And don’t forget to share all your prescription information with your MD, since drug side effects and interactions are one common source of health problems, including sexual ones.
Any form of disability can be associated with depression, anxiety, body image issues, difficulty finding partners, and sexual avoidance. Many involve chronic or breakthrough pain, movement and positioning issues, and sexual response or orgasm limitations either associated with the condition itself or with medications taken to treat it. All this adds up to one thing: people with disabilities or who are differently abled, whether temporarily or permanently, need sex information and support as much or more than anyone else—and their partners do, too. When they do not have sex partners, some have availed themselves of the services of sexual surrogates, also known as surrogate partners. Surrogate therapy, in which a trained person takes the client through a series of sessions to teach and practice physical and sexual exercises, under the guidance of a therapist, can be a helpful step toward a satisfying sexual life, especially for a person with a disability. The surrogate supports that person’s right to a sex life and helps them understand and learn to communicate any specific needs they may have, so they can talk about these with future partners.
Surrogate partners are professionals who are usually referred by a therapist; surrogacy information is also accessible via the Internet. The International Professional Surrogates Association (IPSA) trains and certifies its members; other organizations can also be found online. IPSA’s website surrogatetherapy.org clearly explains their mission and their approach, stating it is based on the “successful methods of Masters and Johnson. In this therapy, a client, a therapist and a surrogate partner form a three-person therapeutic team…These therapeutic experiences include partner work in relaxation, effective communication, sensual and sexual touching, and social skills training. Each program is designed to increase the client’s knowledge, skills, and comfort.”
A person with a disability may or may not choose to work with a surrogate, but they definitely need a health care team that is not only aware of disability issues, including the latest information on their specific disability, but also able to talk frankly and comfortably about sexuality and strategize with their patient for best-case access to information, partners, family communication, and pro-sexual strategies. No person should have health care providers who are not comfortable with sexual functioning, but people with disabilities may need a sex-positive doctor or care team even more than any other kind of person with a sexual question or issue.
The late Mark O’Brien, who lived most of his life in an iron lung due to childhood polio, wrote extensively about his experiences with sexual surrogacy, on which the movie The Sessions is based. O’Brien was assisted by a team of sex-positive caregivers in finding and seeing a surrogate partner (see our resource list). The surrogate with whom he worked, Cheryl Cohen-Greene, has also written a memoir.
People with disabilities use sex toys for the same reasons as anyone: for pleasure, variety, and experimentation. Many people also use some kind of assistive devices or tools in daily life: from the expensive and complex like a motorized wheelchair to items small and simple like a mounted can opener—all are precious to those that need them. So why suffer when it comes to sex? Sex toys themselves assist with sexual difficulties or physical, mental or sensory impairments. These can be seen as comparable to other assistive devices used by people with disabilities. In addition to the toys themselves there are fabulous inventions that assist with sex or in using your sex toy: Find the pillow, strap, sling, extender or other device that will help you.
To look for these items online, try doing a search for phrases like “sex toy assist” or “assistive devices for sex.” Another term frequently used in the adult industry is “sex furniture,” or “position furniture.” We point this one out for you to use as a search tool since that phrase evokes images of sofas and armchairs! In fact, many assistive devices are simple, such as firm pillows in wedge or crescent shapes, used for getting into certain positions, or rocking during sex. Some pillows hold a vibrator, including the Magic Wand, in place so it can be used “hands-free.” Some pillows are made so that a dildo can protrude from them and be mounted. Holders for penis sleeves allow these toys, too, to be hands-free. Long handles can extend a vibrator’s reach; vibes with remote controls prevent you from having to reach or fiddle with small buttons; and various other helpful inventions have been created by someone who might be very much like you!