Nov 052014

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?

Last month was Domestic Violence Awareness Month. IN all the awareness-building, all the activism and solidarity online, I saw almost nothing about people with disabilities who are victims and survivors of relationship violence.

This absence is startling when you consider that people with disabilities are statistically more likely to experience relationship violence than nondisabled people. (And considering that what we know about the prevalence of relationship violence for people of all abilities is only the tip of the iceberg, that’s scary.)

It’s not so surprising though, that disabled people are mostly absent from awareness campaigns, when we consider that disabled people are often invisible in society, and that invisibility is often what makes intimate partner violence (or violence of any kind) possible.

When an abuser can physically control if their victim leaves the house, and whether they get to talk to anyone, or can contradict their partner’s words and be believed because their partner has trouble communicating or sometimes loses touch with reality because of their mental illness, the incidence of violence against people with disabilities becomes even more invisible.

I recently read a small, qualitative study that looked at the impacts of intimate partner violence on the lives of women with disabilities. (As with research of nondisabled people’s experiences, a lot of the material on relationship violence and disability centres on the experiences of women. Men, and people who don’t fall into the gender binary, also experience relationship violence.)

The women in this study identified abuse as the most significant health risk they faced.

We can’t ignore that!

Many policy changes in the United States are calling for healthcare providers to screen for abuse. The implications of this need to be considered carefully when it comes to disabled people. Their abuser may be with them during an appointment to facilitate care or communication, and it may be assumed that this person has to be there. It’s impossible for any victim to truthfully answer the kinds of questions suggested here, if an abuser is in the room.

These are yes/no questions, though, and most people can find a way to indicate yes or no. It’s appropriate for a healthcare provider to spend time alone with all patients. Healthcare providers need to take an active role in meeting patients’ communication needs themselves, such as by making sure whatever technology the patient uses is there with them, learning how to use that technology, or providing a sign language interpreter. (Tip: If a partner says it would just be simpler for them to speak for the patient than for the patient to communicate directly with the healthcare provider, red flags should pop up like they’re on helium. They may put it in terms of making things easier for the doctor. I’d hate to think any doctor (or other healthcare provider) would privilege their own ease over communicating with the patient, but I’ve heard of too many times when a medical office has refused to do the work of getting interpreters for patients who need them to believe that this couldn’t happen.)

Many of the health factors research has shown are prevalent in people who experience abuse may be chalked up to disability without a full evaluation being done, so healthcare providers need to check their biases and beliefs about disability and illness and give their patients comprehensive care. Sometimes, when healthcare providers are less familiar with a patient’s medical condition, they may mistakenly attribute small changes to that condition, or presume that these small changes will be less bothersome to someone with a disability. There’s also the assumption a lot of people make about disabled people’s relationships not being romantic or sexual in nature, coupled with assumptions about what abuse looks like, that could colour healthcare providers’ evaluations of whether their disabled patients could be at risk of relationship abuse.

Being abused can both cause disabilities—physical as well as psychological—and exacerbate existing impairments. Experiencing abuse can impact how people manage their impairments or medical conditions—withholding access to healthcare is a form of abuse. The physical and emotional toll of abuse can lead to stress-related illnesses, compounding abuse victims’ disabilities with additional disabilities and illnesses. (as someone with multiple disabilities, I can personally vouch for the ways that multiple impairments make it harder to mitigate being disabled in this world.)

Another key factor that came up in this study was low sexual self-esteem. When we’re constantly bombarded with airbrushed photos of models, and magazine articles telling us the 101 best ways to please our guy in bed (not everyone has—or wants– a guy, and sexual pleasure can’t be distilled into surefire tips the way, say, scrambling an egg can be.) Meeting these cultural expectations is impossible. For people with disabilities, who often cannot do sexual things the ways other people can, and the ways our culture says “real” sex can be done—and who’ve gotten repeated messages that their sexualities either don’t matter or don’t exist—having any sort of sense of sexual self-worth can be a challenge. The women in this study talked about not being physically able to meet the sexual expectations of their partners, or the expectations society has of how women should be an act sexually.

The participants in this study whose sexual self-worth was lowest were those with disabilities acquired in adulthood, changing their sense of self (sexually and otherwise) and, because of these cultural messages, making it hard to build a new, just as strong, sense of self.

Several of these women expressed that they dated men they would not have considered prior to their injuries, dated men who had criminal histories, or with whom they didn’t click, or whom they didn’t find attractive. This does not mean that they dated men who were more likely to be abusive; it says, I think, that they had perhaps turned off, or at least dimmed, their own warning signals.

Some people with disabilities may tolerate abuse in relationships out of fear that no one else will want them. Sending this message is common among abusive partners, and this form of abuse is even more insidious for people with disabilities because many have also gotten that message from friends and family. As I mentioned above, many people think that folks who get romantically involved with disabled people are a step away from sainthood, and they sometimes will undervalue the sexual, intimate, or equal partnership parts of the relationship.

Part of the structure of society’s attitudes towards the sexuality of people with disabilities is that, even if we do have sexual thoughts, we don’t and shouldn’t have the time to act on them because we’re just so darn busy being disabled. If low sexual self-esteem is a risk factor for abuse, then someone had damn well better make time for recognizing disabled people’s sexualities.

Some of the risk factors correlated with experiencing relationship violence are especially common among people with disabilities. Unemployment rates are high among people with disabilities (the study linked at the top of this post also made this connection). And, while the specific statistics vary, it’s generally understood that people with disabilities are abused, in both childhood and adulthood, at higher rates than people without disabilities.

We have a culture that makes all sorts of excuses for abusers, and all sorts of excuses for why it’s not more inclusive of people with disabilities. If we had true community accountability we wouldn’t tolerate abusive behaviour. We wouldn’t have, when a parent attempts to murder a disabled child, an outpouring of sympathy for that parent, instead of the child she harmed.We would have a culture that says: “We know life was hard for that parent, but it’s never okay to try to kill your child.” That culture would also say: “We need to do better by disabled children and those who care for them.” (Yes, I’ve been talking here about intimate partner violence, specifically, but family violence is similar in that it happens in the home, and within the family unit—both of which are considered—like romantic relationships– beyond reproach and closed to outsiders.)

We’d also have a system in place for people of all abilities, because right now, people with disabilities don’t have equal access to the system we have for intimate partner violence victims/survivors.

It’s not all doom and gloom, and WTH is wrong with this world, though. My little anti-violence activist heart skipped a beat when I discovered these twoorganizations work specifically with people with disabilities who’ve experienced relationship abuse or other forms of interpersonal violence.

On that hopeful note, I’ll close for now (though I have at least another page worth of notes about things I’d like people to know about this topic).

Oct 102014

Today is World Mental Health Day, and I’ve been reflecting on how disability discrimination affects mental health.

Yes, there’s stigma and discrimination against people with psychological illnesses or disabilities; there’s also stigma and discrimination against disability in general that, I believe, can exacerbate, or even cause, short-term mental health crises or chronic or episodic mental illnesses. IN other words, I think the discrimination people with physical, developmental, or other disabilities experience increases our risk of developing psychological disabilities.

I haven’t yet been able to find studies that looked specifically at the effects of discrimination against people with disabilities on mental health, but we do know that disability stigma result in people not seeking treatment, withdrawing from daily activities, and denying the symptoms of any type of illness. Discrimination against people with disabilities can lead to exclusion from educational, social, and employment opportunities. resulting sometimes in experiences of isolation. These situations are also a ripe breeding ground for warning signs of mental health difficulties being ignored, minimized, or unnoticed by the person experiencing those difficulties or by their family or friends.

Many people with disabilities experience multiple types of discrimination, including hate crimes, discrimination in a school setting, harassment in public spaces, just to name a few.

I was able to find studies correlating the experiences of racism and homophobia with experiences of mental health disturbances ranging from chronic stress, to anxiety, to psychosis. I know we can’t use these findings as evidence that people with disabilities will have the same experiences as people of colour or LGBQ and trans folks, but they do set up a convincing—to me, anyway—picture of the impacts discrimination and stigma have on psychological well-being.

This overview of the psychological impact of discrimination against LGBQ and trans people cites research finding that LGBQ and trans folks who live in American states with laws that protect their human rights have a lower incidence of psychiatric disorders than do LGBQ and trans people in states that don’t yet have these laws on the books. The article pulls together a lot of the current data on discrimination and mental health for LGBQ and trans people, and is worth a read.

articles highlight the strong associations found between the experience of racism and the incidence of mental illness.

Because there is so much judgment of people with mental illness—so many assumptions that people with mental illness just “need to try harder,” are attention-seeking, or are crazy and can’t be trusted because of the illness—I think it’s important to say that none of what I, or the articles I’ve linked to, have said means that people who have not experienced large amounts of discrimination have no reason to experience mental health problems. Illness, of any kind, doesn’t discriminate.

Keeping this brief, for once, I’ll close with a link to an excellent blog post encouraging us to have less judgment toward, and more curiosity about mental illness.

Jul 122014

This week, The Atlantic published Should We “Fix” Intersex Children?

When I hear stories like the ones told here, I want to find those children and cuddle them; then I remember that I’m so heartbroken because their bodies were invaded and hurt without their say-so,, so it’s better not to want to cuddle, but to tell them I’m so sorry that happened.

Actually, I want to offer comfort to any child who’s had medically unnecessary surgery. I’m not a medical practitioner, and most definitions of medical necessity out there revolve around what insurance will and won’t cover, so I’m defining medically necessary for my purposes, as any procedure needed to save a person’s life or significantly improve their functioning. So, as in the case of Aliya’s son, the urethra not being in the usual place isn’t a reason for surgical intervention, unless the urethra doesn’t function in a way that’ll carry urine out of the body. And no, not being able to pee standing up, in the “manly” way, doesn’t count as reduced function.

Surgery is stressful. Surgery is traumatic.

Not understanding what’s happening to your body is terrifying, and that fear doesn’t leave once the bad time is over.

It doesn’t matter whether a child can consciously remember the surgery. It, like abuse, leaves its imprint on the body and psyche.

This isn’t just rhetoric here; I know what I’m talking about.

Between my birth and shortly after my fifteenth birthday, I went through over 20 surgeries. Most of them were on my head and face. None of them were genitally related. I remember few of them. All of those surgeries were necessary to my survival and my functioning, but I also know the toll they’ve left on my mind and body. There are only so many times you can take a body apart and put it back together again before it just doesn’t feel right or function cohesively.

To leave that toll just because a child’s body doesn’t conform to arbitrary gender or attractiveness standards is violence.

Adults are free to get whatever cosmetic or medical surgeries that aren’t strictly necessary they want. Yes, we could fault beauty norms for pushing some adults into thinking that they have to have surgery to improve themselves, but ultimately they have choices, and are free to exercise those choices.

Children aren’t given those choices. Babies and very little children aren’t able to make such choices. Children’s bodies are growing and changing—should not be interfered with unless interference is needed for survival and healthy growth. If it’s possible to facilitate a child being able to breathe, talk, walk, and otherwise move their body without inflicting lasting harm, then certainly that can and should be done. That’s what I mean by healthy growth.

”The journalistic integrity in this article, presenting as many views and realities as possible, is wonderful, but I am not swayed.

We must not take the bodies of little children apart just to put them back together the way we think they should go.

The validation for surgery on intersex babies came from a psychologist named John Money.
This was the result of his experiment with which doctors have justified operating on intersex children.

One of the medical establishment’s goals is to prevent disability and illness. The Hippocratic Oath commits healthcare providers to never do harm.* How then can medicine, as a whole, ethically justify procedures that can cause physical or psychological disability.

Medically unnecessary surgery disables children. It can lead to chronic pain, nerve damage, and injury as a child’s body grows out of the procedure–physical disabilities that wouldn’t have been there had the surgery not happened. Gender dysphoria, and the sense of bodily violation, can lead to mental health difficulties like anxiety, depression, and thoughts of self-harm. Yes, medical treatments can be experienced as violations. That’s why I call it medical violence.

We should not be disabling children. The fact that the justification for disabling children in this way came from an experiment that harmed a child–a human being–so greatly is horrifying.

As to whether children should have genital-normalizing surgeries to protect them from bullying: People—children and adults–will always, always find something to bully about. That’s not going to change. Submitting a child to surgery with unknowable results isn’t going to change social structures or the bullying problem. (I was going to say that surgery wouldn’t change human nature—which is also true—but I believe that the pervasiveness and escalation of bullying have much more to do with social structures than human nature.

I’d argue too that every child deserves privacy, including privacy from other children, so that if they don’t want to, or don’t feel safe with, showing their bodies to their peers, they don’t have to. It’s ridiculous, actually, that on one hand adults preach to children about modesty while on the other hand children are not given the chance to practice any form of modesty if they wish too.

I should clarify here that I don’t think there’s anything bad or immodest about bodies, or about being unclothed around other people in contexts where that makes sense—like locker rooms. What I take issue with is the contradictory messaging children are given around privacy, and the lack of options for children to make decisions around their own bodies. It’s shameful how little bodily autonomy children are allowed.

The tendency to bully around difference is a massive topic requiring another post, but again, people will always find difference, even if it’s not staring them in the face.

So, if we don’t do genital surgery on intersex children, what do we do about assigning gender? I don’t know. I’d like to think that we could just raise children in a non-gendered, or maybe a multi-gendered, way until, or if, they choose a gender for themselves. Most Western and westernized cultures are so dependent on the gender binary, for everything from naming children to assigning them to sports teams and other recreational activities, that my wee brain just can’t quite envision how these cultures could move past this tendency to raise children without actions that lock their existence into a gender binary. I wish I had that kind of expansive imagination, and even more that if I had that imagination it could make real cultural change.**

The only thing I know for certain is that hurting children is bad, and that having a medical degree and seeing genitals that don’t fit what your textbooks tell you is normal is not a free pass for causing hurt.

*For a modern version of the Hippocratic Oath, take a look here.

** Someone did have that kind of expansive imagination.