At a sexuality conference in Guelph, Ontario about 20 years ago, I watched in awe as a man using a wheelchair danced at a social event with his partner seated on his lap. It was mesmerizing. That was my introduction to the now more commonly acknowledged fact that people with disabilities are sexual beings. Sounds pretty obvious, right? But it is one of the persistent myths about people with disabilities that they do not have sexual lives, despite the fact that as the Canadian population ages more and more of us will become disabled in one way or another. The current figure of 14 per cent of Canadians with disabilities does not even cover chronic conditions. We will all have to make adjustments in our sexual lives as we develop the diseases of aging like heart disease, stroke, diabetes, arthritis or other mobility problems. Our sexual self persists despite these barriers. My mum was still asking me to pluck out her chin hairs just months before she died.
Disabilities include mobility issues, spinal cord injury, head trauma, hearing or vision impairments, as well as psychological and mental health issues. Aside from the disability itself, sometimes treating the conditions of the disabilities can interfere with people’s sexuality. For example, medication for heart disease or diabetes may further affect a person’s ability to enjoy their sexual life. Surgeries to treat certain conditions can leave nerve damage in key areas, affecting one’s sexual response. Some people who have lived with mental disabilities for years have found that their medications affect their desire and ability to have an orgasm. Negative sexual symptoms from anti-depressant use may even persist after discontinuing the medication.
Like people with disabilities, people with chronic conditions like Fibromyalgia Syndrome (FMS) and Chronic Fatigue Syndrome (Myalgic Encephalomyelitis, or ME) may also have issues with sexual expression.
As Adrienne Dellwo says in her article “Sex With Fibromyalgia or Chronic Fatigue Syndrome: It Doesn’t Have to be Gone for Good”,“Either pain or fatigue may be enough to make someone fear or avoid sexual activity. When you have the FMS symptom of allodynia (pain from gentle touch) or the ME/CFS symptom of post-exertional malaise (exhaustion from moderate activity), sex can seem impossible.”
Dellwo outlines some obstacles to sexual activity, like self-image, strained relationships, depression and brain chemistry (due to neurotransmitter dysregulation) which may “sap motivation.”
While we may publicly acknowledge that people with disabilities and chronic conditions are sexual beings, their own families may have a tendency to treat them differently. For that reason, some people with disabilities may have had difficulty seeing themselves as sexual people, especially if they were not treated as such from the time their disability first became apparent. As they mature, for some, their sexuality is very important to their lives; for others, less so. And they may not necessarily just want to be intimate with other people with disabilities. The woman flying around on her partner’s lap was able bodied.
Like elderly people in a long-term care facility, people with disabilities have a right to a sexual life. Appallingly, whether in a facility or not, people with disabilities have a higher risk of sexual assault—up to ten times higher—than people who do not have disabilities. That means that education and vigilance are paramount, both for people with disabilities and their caregivers, if they have one.
Sexual health education has advanced in the thirty-plus years since I first got into the business. Aside from teaching people with disabilities and their caregivers about increased risk, we can also introduce them to wonderful materials. There are websites for people with both physical and mental disabilities, devoted to dealing with sexuality issues, such as the sexual health manual PleasureAble published by the Disabilities Health Services Network.
Here, you can find sexual aids for people who cannot use their arms, people with little upper body strength, ideas for people who are not very flexible, diagrams on how to use a chair for sexual activity and ideas for positioning. For people with MS, for example, taking anti-spasmotic medication before sexual activity can be helpful; for people with sphincter or bladder issues, it is recommended that they empty before any sexual activity. They also recommend finding activities aside from intercourse, like erotic massage, mutual masturbation or watching erotic films.
Because there are no rules or definitions about what a sexual activity is, there is a lot of room for creativity for people with disabilities and chronic conditions. And of course, as with any couple, communication is key. You need to be very clear about what feels good, what is less pleasurable and what positions provoke discomfort or pain.
Sexual health educator, Cory Silverberg, points out that it is important to explore one’s body in a systematic way; in particular, to find out where there is sensation and where there is not. Doctors, he says, verify the lack of sensation with pinpricks, but this is not the same as testing for sexual stimuli, which is more complicated. Silverberg suggests “mapping” one’s own sexual anatomy to be better informed about sexual responses.
As is often the case when it comes to our sexual selves, the more information we have, the more tools we learn to use. Using a wheelchair to twirl your dance partner or as a support for sexual activity can be a great way to get off.
Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain and Illness. Miriam Kaufman, Cory Silverberg, Fran Odette, Cleis Press, 2007.