Apr 202016

It just feels like one more thing my illness is taking away from me.

A friend who has several chronic illnesses had just finished telling me how she has to change her sexual practices for a while. She has a primary sexual and romantic partner, and several “friends with benefits” she has sex with occasionally.

The casual sex, she told me, has to be put on hold for a while. Her doctors have put her on immune system suppressing medicine that makes any risk of contracting a sexually transmitted infection, even one as usually nonthreatening as herpes, dangerous for her. The doctors were adamant: Safer sex wasn’t going to be safe enough, unless she could guarantee that her partners were STiI-free, something none of us can know unless everyone’s had two sets of STI tests come back negative and we can guarantee that everyone in the sexual relationship has been monogamous for all kinds of sex.
Not so easy to do with casual partners.

As I listened to my friend, I wondered if her doctors could hear the desolation in her voice too.

Maybe you think giving up a friends-with-benefits arrangement isn’t as big a deal as, oh, having to quit your job for health reasons, or learning that there aren’t any more treatments to try, or…and you’d be right, mostly, for some people, some of the time.

Our sexualities are a big, big part of who we are, whether we’re asexual, polyamorous, or anywhere else on any sexuality or relationship spectrum, and, for folks who are chronically ill, maintaining as much of who you are becomes a lifeline, one of the things that helps you feel human when you can’t rely on your body to do the same thing from one day to the next.

There are plenty of reasons for therapists, doctors, and other healthcare providers to make asking about sex and sexuality a more regular part of their practice with clients or patients. Sexuality, for most of us, connects with most aspects of our physical, mental, and, for some, spiritual health.

Knowing that we can share as much as we’re comfortable sharing of our feelings about and experiences of sex, as well as our broader interaction with our sexualities (including our past intimate relationships, desires around reproduction and parenting, histories of abuse, and more) with a healthcare provider who will use the information to help, not judge us can save folks a lot of worry and heartache, not to mention help protect physical health and get support around experiences of sexual assault or violent relationships. One of the biggest struggles people have around their sexuality,or how they express themselves sexually, is feeling sure they’re alone in their experiences or desires)

Giving permission for, or actively opening up the conversation about sex and sexuality is something doctors, therapists, and other healthcare providers need to be doing a lot more, with all their patients and clients, but especially with those who have disabilities or chronic illnesses.

This is true when the disability or illness afects a person’s day-to-day health (such as an autoimmune disorder) or when it has little to no impact on a person’s general health (such as blindness).

Most people’s sex and sexuality concerns, feelings, desires, or experiences will cover the same or similar ground, regardless of disability or illness.

There’s no “disabled sexuality” that comes along with having an illness or disability.

Disabled folks are kinky, asexual, willingly or unwillingly celibate, happily or unhappily married, polyamorous,
single, or any other sexual or relationship status you can think of.

But, there are a few things I think healthcare providers should know related to the experience of disability or chronic illness.

Here they are, in no particular order:

We need you to believe in our intimate relationships, because so many people don’t.

partners of disabled people frequently hear things like:

  • “You’re brave for dating her.”
  • “I guess you have most of the responsibility in your relationship?”
  • “It must be so hard taking care of him all the time. Who do you have to take care of you?”

Consider what Anna shares about her experiences being married to someone with physical disabilities:

Mostly, though, people who have seen Don and I together, who have watched us be cuddly, hold hands, and just be a couple together in public will often be shocked – shocked I tell you! – to find out that I’m not his caretaker or his sister, but that we’re married and have (whispers) sex. With each other. …
at least one ex thinks that Don can’t possibly be satisfying me so I should have sex with him instead.

For disabled people, the messages are often similar, though sometimes more subtle: We shouldn’t try to have romantic relationships, anyone who’s interested in us isn’t going to hang around for the long haul, that we have more important things to worry about than being in a relationship, or that they’ll be lucky to find anyone who can take care of them. All this is exacerbated by a prevailing attitude that disabled people are childlike, that impairment and disability make a person helples to make the right choices for themselves and protect their own safety (or make sound decisions about when we feel okay about taking risks).

When family or friends aren’t actively discouraging a disabled person from entering a romantic relationship, they’re weighing in on whether disabled people should only date other disabled people, or should seek out only nondisabled potential partners. Disabled people are often the most vocal, and most judgmental, on this question. There’s no consensus in these debates, except for how completely they ignore the obvious–that impairment status doesn’t tell anyone how they’ll connect to someone as a person, and that love, care, and connection are what most people look for in an intimate relationship. Some disabled folks might choose to date only disabled, or nondisabled, people, but that’s a deeply personal choice, not one, in my opinion,to be debated around the dinner table, or anywhere else.

Other people’s opinions can and do put a lot of pressure on a disabled person looking to start a relationship who doesn’t get support for that from their family. It can also put stress on a couple, if they feel as if no one respects the bond they have as intimate partners. When a visibly disabled and visibly nondisabled partner go out together, they’re rarely read as lovers or spouses. The visibly nondisabled partner might feel resentful about being mistaken, by servers in restaurants, or, yes, staff in doctor’s offices or hospitals, for their partner’s nurse, payed caregiver, or family member.

Developing a disability or chronic illness as an adult means changes, changes to body, changes to mind, changes to relationship, changes to sexual feelings, experiences, to the ways a person does sex.

Acquiring a disability or illness can impact relationships. patients and clients need their healthcare providers to talk about that, or at least raise the subject. Many people don’t know how to talk about sex and sexuality at the best of times, and with the stress of illness or disability onset, people may need support with knowing how to talk to a partner about the changes in their relationship balance and sex life,, or even with knowing how to grapple with their own feelings. Acquiring an illness or disability also often means that things like medicines, or physical therapy, or long-term disability benefits take priority, and patients can really benefit from their healthcare provider letting them know that the health of their sexuality and their intimate relationship (if they’re in one) are also important.

Sarah Smith Rainey’s book, Love, Sex, and Disability: The Pleasures of Care, is an excellent resource if you want to learn more about the role disability plays in relationships.

We need you to know that we’re just as likely to be interested in parenting,and to be good parents, as nondisabled people.

Disabled people are told, in big and little ways, that we can’t be parents. It’s a social habit (and a nosey habit) here in the U.S. to ask adults when they’re going to have children; the culture is one of active encouragement towards parenthood. Disabled people are often left out of this cultural habit, are assumed to not be parents, or are actively discouraged from parenting. I’ve heard that the disbelief sometimes goes so far as people asking a visibly disabled person whether the baby they’re holding is theirs.

All this takes an emotional tole, but also a legal one. Custody disputes are often settled with a simple mention of disability, with custody given to the nondisabled parent without investigating whether being with the disabled parent would actually be the best option for the child. Sometimes, it doesn’t even get that far, and babies are removed from their disabled parents at or shortly after birth.

Consider the case of these parents, who both have cerebral palsy or these parents, both of whom are blind. In both cases, the parents were considered incompetent because they couldn’t physically do parenting tasks the same ways nondisabled parents do them. These parents were essentially treated like children themselves, without any seeming awareness that living, as they do, in a world literally not built for them, they have more than likely developed a lot of resilience and creativity. This isn’t about disabled people being superhuman; it’s about what skills people develop to survive.

There’s a shocking, but not surprising, lack of knowledge about how disabled parents can and do care for children – using adapted baby care equipment, for example – often resulting in child welfare workers removing the child, forcing the parents to prove their abilities to parent. Most new parents learn as they go, and requiring a higher standard of proof from disabled parents is unfair, and not necessarily in the best interests of the child.

There’s really no excuse for this ignorance. According to The most recent estimates, 4.1 million parents in the U.S. are disabled, and have a child under 18 living with them. In other words, disabled parents aren’t rare, and most of them have been able to parent their own children just fine.

Disabled people who want to parent need to know that they have a healthcare provider or therapist on their side, someone who can educate them about parenting in general if they need or want help, offer information about parenting as a person with a disability, and be prepared to advocate on their behalf if their parenting is interfered with for reasons of disability alone.

To learn more about how disabled parents care for children, visit Through the Looking Glass and Disability, Pregnancy, and Parenthood.

To read findings (and recommendations) on the current state of parental rights for people with disabilities, check out Rocking the Cradle, a report from the National Council on Disability.

We need you to know that many of us have,or will, experience abuse, sometimes in healthcare settings.

What do you do when your abuser is also your care provider, someone who bathes you, or dresses you, or whose assistance you need if you want to leave the house or communicate with other people? What do you do if people constantly tell you not only how good a person your abuser is, but how courageous and wonderful they are for helping you? What do you do when your abuser doesn’t treat you like a human being, but neither does much of the rest of the world?

This is the reality for many disable people experiencing intimate partner violence or other forms of abuse.

are disabled people at greater risk of abuse than nondisabled people? The research we have on this is mixed, but results from the Disability and abuse Project and Baylor College of Medicine both show that disabled people who do experience abuse are likely to have experienced multiple incidents. Baylor’s research showed that disabled women experienced abuse for longer periods of time, and from a greater number of abusers than did nondisabled women, even though the actual percentage of disabled and nondisabled women who reported physical or sexual abuse was the same. The Disability and Abuse Project found that more than 90% of the disabled people who reported having experienced abuse reported experiencing abuse multiple times.

The numbers are hard to pin down, but the concensus is that abuse is present in many disabled people’s lives. Participants in this study identified abuse as the most significant health risk they faced. All of this is compounded by physical and social barriers in the way of disabled people in abusive situations asking for and receiving help.

It’s not just disabled adults at risk of abuse.

Many children with disabilities are at higher risk of abuse because they come into contact with more adults who can claim the right to take them into private spaces without being asked questions. The authors of The Ultimate Guide to Sex and Disability suggest that disabled children’s exposure to a greater number of people than nondisabled children are usually exposed to – medical specialists, nurses, physical, occupational, and speech therapists, educational assistants and support workers – accounts for the higher incidence of physical and sexual abuse they, as a group, typically experience.

This resonates with my own observations. I can personally count on the fingers of one hand, without thinking too hard about it, friends and acquaintances who were abused by people who were supposed to be teaching or caring for them in a disability setting. It’s as heartbreaking as it sounds.

None of this is meant to minimize the abuse nondisabled children and adults experience, or to imply that all disabled people have a history of abuse.

But, therapists and healthcare providers do need to pay attention. You might be a disabled person’s first, and only, line of defense to cope with or get out of an abusive situation. Your patients and clients may also have deep and complicated histories of abuse. Please, don’t be afraid to ask.

We need you to know what travelling through the world with a disability is like, and to make sure we don’t have that experience while we’re in your office.

But, this isn’t about sexuality, you’re probably saying.

If your disabled clients are going to trust you enough to talk about sex and sexuality, we need to feel safe in your office. It means helping you understand the disability-related stresses we might b (scratch that: that we’ll probably be) carrying into our appointment with you, whether we’re seeing you for a routine physical, or for grief counselling, or to get forms fille out that will make our lives as disabled people easier.

The points below just scratch the surface of disabled people’s experiences in our world. I’m putting them here as a mini road map, not a technical manual.

Disabled advocate Dave Hingsburger writes about the social exhaustion many disable people feel after a day out in public. And in this post he’s just observing routine disability-related conversations. These don’t include the highly emotionally charge discussions with strangers who walk up to us, out of the blue, and ask to pray with us, or being stuck next to someone on the bus who wants to tell us all about all the disabled people they’ve known, or responding to people’s anger because we don’t fit their definition of a disabled person (for example: a wheelchair user who stands up to take something off a high shelf, or a blind person carrying a cane who reads a print sign). They don’t include the condescension, or the gushing claims of how much they admire us.

They don’t include the random, uninvited pats on the head or shoulder, or back, or hand from strangers.

They don’t include having one’s arm, or mobility aid, grabbed without permission by someone who “just wants to help” but instead scares us half to death, or throws off our already unsteady balance, or disorients us by dragging us across a street we never intended to cross.

For visibly disabled people, the interactions with strangers can be constant, and tedious, especially so for the congratulations or praise for doing everyday activities

  • To be spoken to directly, even if we’re with a visibly able person, even if that person is, in fact, speaking for us.
  • To be asked what kind of help we need; to not be touched until we say so.
  • To be spoken to in a respectful tone of voice, addressed by our name, not with terms of endearment. To not be treated like children. (For that matter, most of us could stand to treat children more respectfully anyway.
  • If you want to know how we do any sort of every-day task,such as bathing or dressing,I suggest:

    • Ask Yourself: Do I need to know this for treatment purposes, or to satisfy my curiosity. If the former, say so when you ask the question. If the latter, Google is your friend.
    • If you do want to ask to satisfy your curiosity, write yourself a note and ask at the end of the appointment. This way, the patient or client spends appointment time talking about what they need to talk about, not explaining how they put their socks on in the morning.
    • If you do decide to ask about the socks, or anything else, think about how you ask. Here’s an example: I’m blind. When I first met my primary care physician, she asked me what the best way would be for her to send my test results. She did not automatically asume, as others would, and have, that someone would read the results to me. This went a long way towards helping me trust her.
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