Nov 122015
 

Peer Advocate’s Experience of Deaf Women’s Disclosure of Sexual Assault

Noelle Opsahl, Master of Education of the Deaf (M.E.D.)
Gallaudet University

First, a cool thing. Noelle, the presenter,told us that this was the first time she’d given this presentation in English, though she’s presented it in ASL (American Sign Language) several times. Noelle is hearing, and English is her first language. Given that ASL wasn’t even considered a language until a handful of decades ago, it hits all sorts of awesomeness buttons for me that this work was presented through, and grew through, this language.

Noelle gave the audience a brief outline of Deaf culture, hearing privilege, and “Big D” versus “Little d” deaf community.

If you’re not familiar with deafness or Deaf culture, this question-and answer page from the National Association of the Deaf is a helpful place to start.

This page from Gallaudet University has more information specifically about Deaf culture.

It’s a big thing when anyone discloses they’ve been sexually assaulted. whether they’re telling the police, a friend, a family member, sometimes even their own diary. So many emotions can come up, including (but never limited to) fear, denial, shame, embarrassment, relief, back to fear, and more.

How someone reacts to this disclosure can play a big part in how or whether the person who experienced the violence feels safe enough to ask for practical help, mental health services, and anything else they need to help their healing process and help them stay safe.

After several D/deaf people disclosed their experiences of sexual violence to her during her stint as a peace Corps volunteer in Kenya, Noelle Opsahl decided to study D/deaf people’s experiences of disclosing sexual assault or intimate partner violence, particularly to hearing people.

She’s in the midst of her research now, so her presentation focussed on teaching us the basics of D/deaf community and culture, and the nature of sexualized and intimate partner violence in the Deaf community.

The Deaf community has a long history and culture. It (the community) is mostly made up of people who grew up Deaf, and communicate primarily (or even exclusively) through ASL. The community is small, tightly-knit, has cultural norms and taboos that are different from those in English-speaking American culture. (There are, obviously, Deaf communities around the world, all speaking different forms of sign, so to keep things simple, and because its the community Noelle spoke about most in her presentation, I’m talking about folks in the United States.)

No matter where in the U.S. members of the deaf community live, they’re socially and culturally connected, and often know each other, or have heard of each other.

When D/deaf people disclose that they’ve experienced sexual assault or domestic violence, they face additional barriers that hearing folks don’t face. If they’re disclosing to a therapist, doctor, police officer or other helping or law enforcement professional, there will often be a third person in the room – the interpreter. Disclosing to an interpreter, even with confidentiality agreements interpreters sign as part of their work, could feel really vulnerable, and, I imagine, could make disclosing feel like more work than it’s worth.

Or, if there is no interpreter, the Deaf person and the hearing professional might be communicating through writing. Some members of the Deaf community are not fluent in English reading and writing, so this is not going to be the best way for them to get or give information, let alone feel safe and heard around something vulnerable. I was surprised (though I guess I really shouldn’t be) to learn that hearing professionals, such as doctors or police officers, will sometimes, instead of finding an ASL interpreter to help them communicate with a D/deaf person coming to them for treatment or to report a crime, will instead turn to, say, another person in their office who just happens to have a basic knowledge of finger spelling. (Finger-spelling is only a small part of sign language – same as being able to spell out the letters to a word is only a small part of any spoken language.) Noelle made it clear: Don’t do this for important conversations, just don’t. I’m imagining that doing this would be something akin to asking a colleague who’s preparing for a vacation to Italy by reading an Italian phrase book for tourists to come translate for a patient or victim who speaks only Italian.

Disclosing to a hearing person can also be complicated if the person who typically acts as the survivor’s interpreter is also the abuser. This is one of the ways abusers (particularly, but not only, hearing abusers) will isolate their D/deaf victims.

DeafHope, an organization providing culturally specific education and services to D/deaf people, has identified specific behaviours common to abuse by and of d/deaf people, including:

  • Abuser says no one will believe the victim because they (the abuser) is well-known and respected in the deaf community.
  • Abuser justifies invasions of privacy (such as routinely reading victim’s texts and emails without permission) by saying this is culturally acceptable in the Deaf community.
  • Hearing abuser tells children not to use ASL to communicate with their D/deaf parent.

I think this information is especially important for folks working in the sexual assault and domestic violence response fields because much of it might not be recognized as abuse without some knowledge of Deaf culture. Someone persistently signing in someone’s personal space, for example, might simply be perceived by a hearing person as rude; or, the hearing person, with no knowledge of sign language, might not even know that signing in someone’s personal space signifies anger.

The full DeafHope Power and Control Wheel is here.

This model was adapted from Domestic Violence Intervention Project’s Power and Control Wheel.

Both of these wheels use gendered language, with the man as the abuser and presuming the woman is the abused partner. While man-to-woman intimate partner violence is prevalent, and has gotten the most research and intervention resources, anyone of any gender can abuse or be abused in a relationship. I really would like to see more intimate partner violence research and intervention organizations using gender-neutral language so that more people will feel safe to reach out for help.

Noelle’s presentation was full of information, and I’m excited to see where her research goes.

I’m also really glad that her work was included at a disability conference, since the Deaf community and disability community usually see themselves as having different goals. (Many people in the Deaf community do not think of deafness as a disability.)

One more thing I should mention: Noelle was clear that she is a hearing person, that she has advantages and power as a hearing person, and that, as a researcher, and as someone who spends a lot of time with the deaf community, she’s in no way speaking for D/deaf people. I’m not the best judge since I’m not part of the Deaf community, but I think she succeeds in this. Her presentation was educational, without trying to explain what it feels like to be D/def or part of the Deaf community and without making generalizations about anyone’s experiences.

Keynote Presentation: Harilyn Rousso

Harilyn is truly an elder – an experienced and wise person – in both the disability rights and feminist communities. She has my endless admiration for all the work she’s done, and the honesty she shows in her stories. Hearing her speak, and read from her memoir, was a pleasure, and an education.
Many of the stories in Harilyn’s memoir Don’t Call Me Inspirational: A Disabled Feminist Talks Back echo the themes of both movements – moving away from helplessness towards independence, expressing sexuality, and building positive self-esteem and body image.

Don’t Call Me Inspirational puts words to the experiences many of us have had growing into adulthood with physical disabilities. Being blind, learning to drive was never on the table for me, but Harilyn’s words in Driving High feel so familiar. Deciding to take this rite of passage was an internal conflict, being tugged between being coaxed to learn by her mother who knew how crucial it would be for her independence, hearing her doctor say she’d be a hazard to other drivers, experiencing her own doubts:

I, too, had doubts about my driving, but these had little to do with my physical limitations. The image of myself as a driver was incongruous with some internal experience I had of myself of needing to be cared for and directed, of not being able to be in the driver’s seat of my own life.

And these words, from On Not Looking in the Mirror lodged in my mind as soon as I heard them, and have stayed with me: “I buy a full-length mirror, not to please my mother–although she would be pleased–not to fix myself but to find myself.”

The reading was followed by a question-and-answer session.
When an audience member asked how she’s managed work-life balance with everything she’s accomplished, harilyn laughed, and pointed out that she’s done all this work over decades. She shared that she paces herself, that she’s stopped trying to prove anything to anyone. Many disabled people find themselves in the position of feeling like they have to prove themselves by doing everything mor and better than other people – playing “supercrip” as Harilyn put it.
She also had some solid advice for professionals about addressing their own biases around disability, as well as around race, class, and other marginalized experiences. Therapists and other helping professionals, Harilyn told us, like to think they don’t have biases and assumptions, but they do. They can’t do their work well if they don’t face and work through these assumptions. She also encouraged helping professionals to keep listening, and to be comfortable with saying that they don’t have all the answers. Harilyn didn’t mention this, but I’d like to add that many people have strong personal fears about disability and illness, so it’s especially important for helping professionals to understand their own fears so they don’t project them onto disabled patients or clients.

UP Next: Day 3: The hypersexualization of women diagnosed with bipolr disorder, closing “Town Hall” session, and my own thoughts about how to use what I’ve learned.

Oct 092015
 

diane De Vries was born without arms and legs. This fast-paced, hard-hitting and beautifully honest documentary takes us through Diane’s life, through the ways the fear of her devoutly religious grandmother and the physical neglect of her mother shaped her childhood, through the ways being physically different impacts her interactions with others as an adult (she describes going to a networking luncheon where other participants asked about her wheelchair, but not about her work), her hopes and struggles, her experiences with intimate relationships and sexual expression. Some of her friends and attendants share their feelings and reactions to Diane, and their observations of how the rest of the world treats her.

What sets this story apart from other disability-related documentaries is Diane’s candid discussion of her experience in an abusive marriage.

I don’t think I ever felt like a victim, except when I was Jim’s victim.”
Jim was always my attendant as well as my husband, which I always hated. I thought that was the worst thing we could do to our relationship…
But he never wanted me to have an attendant.

He wanted the extra money.

He wanted to feel needed.

Disabled people are often at increased risk of experiencing intimate partner violence, and diane’s experience ticks a lot of the boxes for abusive situations – isolation, enforced physical dependence, and financial dependence (the couple’s economic stability rested on diane’s agreeing to let her husband work as her attendant).

Diane describes how Jim would become violent when drunk, throwing things, hitting her, and shaming her for the physical help she needed from him, such as help using the toilet.

This was in the seventies, and there wasn’t much technology to help people with limited mobility to use the phone, leave the house, or otherwise leave an abusive situation without someone’s help. Diane was eventually able to leave, after a friend dropped by to visit during one of her husband’s violent attacks.

Diane De Vries is (or was, I haven’t yet been able to learn whether she is still alive) a fascinating woman.

This documentary is one of the only sources I was able to find in which her story is told in her own words.

You can learn more about her through the cultural biography Venus on Wheels: Two Decades of Dialogue on Disability, Biography, and Being Female in America or through an essay (by the same author of the biography) published in Women with Disabilities: Essays in Psychology, Culture, and Politics (Health Society And Policy).

Note

October is Domestic Violence awareness Month and this entry is part of a series of posts aimed at raising awareness about disabled people’s experience of domestic and intimate partner violence.

Jul 232015
 

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?

Even though people with disabilities are statistically more likely to experience relationship violence than nondisabled people there’s virtually nothing about what disabled people experience included in anti-domestic violence education, fundraising and awareness campaigns, or other forms of activism. (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 whose mental illness sometimes affects how they experience the world around them, 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 lack of research and activism with these groups means services can be rare or unhelpful.
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 the patient always needs their caregiver with them.

It’s impossible for any victim to truthfully answer the kinds of questions suggested here, if an abuser is in the room.

Most people can communicate in some way, and most people can find a way to respond to these questions, which just ask for a yes or no answer – response options could include head gestures, hand gestures, eye blinks, words on a communication board or an electronic communication application (such as on a smart phone or tablet), sign language, or talking.

It’s appropriate, and necessary, for a healthcare provider to conduct at least part of a patient’s appointment with no family members or other caregivers in the room, unless the adult patient makes it known that they want someone to stay. 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 romantic or intimate partner (or anyone, really, other than the patient) 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, so be less likely to investigate their cause. 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 the study I mentioned above 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 broken down 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 and should 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 regardless of anyone’s abilities, 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.

Very few organizations work specifically with disabled people who have experienced abuse. These two are exceptions.

We need fewer exceptions. We need agencies to stop working on a scarcity model that makes being inclusive of and accessible to disabled people seem like too much work – like something they just can’t do with the limited financial and human resources they have. We need online and offline awareness campaigns to include the voices and experiences of people with disabilities, not as unique additions to the anti-abuse message, but as full and equal participants in sharing stories and support, and finding solutions.