Chronic Illness, Disability and Abuse: Staying Safe
MyRACentral and several other HealthCentral communities are marking Domestic Violence Awareness Month with posts about the issue and how it relates to chronic illness and disability. Check out our special Domestic Violence Awareness Month page for links to the other posts and resources.
"Ease up a little, please."
"Not so hard."
Almost every time this attendant was scheduled, she'd used too much force when assisting me in the shower, dressing or other personal tasks. Almost every time, I'd have to ask her to be more gentle. I told management about it, but not in a formal complaint - I was afraid of reprisals from her or her coworkers. Then one day, as she was washing my hair, she pressed harder and harder and harder on the back of my neck, causing a severe injury. Finally, management made it safe for me to complain. They asked me if I'd told her to stop that day in my shower and I hadn''t. I had been incapable of speech, in shock that someone would deliberately hurt me, just breathing through the assault, waiting for it to stop. And it finally did. I never saw that particular attendant again. But every day, chronic whiplash-like symptoms serve as a reminder of what she did to me.
When you live with chronic illness, you live with the possibility of needing help from others. Sometimes, it's temporary and sometimes, it's for the rest of your life. In either case, it also leaves you more vulnerable to being abused.
What, How Much and Challenges in Getting Out
Rates of abuse of people with disabilities are higher, sometimes much higher, than amo0ng the able-bodied. It is estimated that "women with disabilities have an 83% chance of being sexually assaulted in their lifetime." This number includes women with developmental disabilities who are victims of sexual assault at a horrifying rate. Over 90% of both women and men with intellectual disabilities will experience sexual abuse at some time in their life. If you ask women with physical disabilities, 62 percent of them have reported being victims of physical, sexual or emotional abuse. Men with disabilities are more likely to be abused, as well.
When people with disabilities are abused, it is most often by their caregivers, people who are trusted to assist them to live more independently. Some who help do choose this kind of work because they genuinely want to help others. Many choose to care for loved ones without pay and do so with kindness and generosity. However, the ugly underbelly of caregiving is that some of those who provide it find ways to exert power and control over the people they are supposed to help.
Abuse can take many forms. Physical like hitting, slapping or being rough when providing personal care. Sexual abuse includes rape and being forced to engage in unwanted sexual activity, even when it is by a partner or spouse. Verbal or emotionalabuse happens when someone threatens to put you in an institution, calls you names or controls you by saying they won't provide care for you if you don't behave in a certain way. When someone controls your money without your consent, it's financial abuse. And then there is neglect, a sometimes more subtle way of exerting power and control. Leaving you too long on the toilet, not assisting you with changing out of dirty clothes, not ensuring you have food and drink before leaving the house are all examples of neglect.
Getting out of an abusive situation is hard for anyone, but even more challenging when you have a disability. As my experience illustrated, reporting that paid worker to their management can be fraught with fear of reprisals, but what do you do if you caregiver is your spouse or another family member? Someone who lives with you, someone who is intertwined in your life to such an extent that everything change if they are no longer there. R. Amy Elman writes "one cannot ignore the greater reliance of women with disabilities on others for care and their fear that reporting abusive providers and companions might trigger the end of a relationship and loss of essential care." She cites a study that found women with disabilities experience abuse for an average of 3.9 years as opposed to able-bodied women's 2.5 years.
And then there's this other thing. The part where often, if you are an adult with a disability, you often fall between the cracks when it comes to protection. There are protective services for children and more awareness about elder abuse, but if you're between 18 and 65, there might not be a process or agency in place that can help you. And what if you need an accessible shelter?
There Is Help
If you receive care from an agency, make sure you know your rights. When you start receiving services, you should receive information about the agency, including their abuse prevention policy. Reading this can be incredibly empowering. If you are being abused, start documenting the incidents. Even if you're not yet ready to report what is happening, keep a log with the dates and times you see the worker and what happens every time you do. The more specific you are and the more documentation you have, the stronger your case will be. Once you have made a complaint - in writing is best - they must remove the worker in question from providing service to you during the investigation. If you become the target of reprisals from any other staff of that agency, report it immediately. If you have a social worker involved in helping you, talk to them about the issue - they may be able to give you back-up or refer you to other resources.
If you're dealing with domestic abuse, talk to someone you trust, such as a social worker, your minister, a member of your family or call a hotline. Staff at national hotlines will talk to you about what you're going through and give you resources in your area that can be of more specific help.
A few states have adult protective services where you can report abuse or violence of any kind. The Disabled Persons Protection Commission in Massachusetts has a hotline that takes complaints and directs callers to appropriate investigative services, including the police. They also train people with disabilities, family members, first responders (fire, police, paramedics) and others in recognizing and responding to abuse. A few other states, including California, also have adult protective services. The National Adult Protective Services Association may be able to direct you to resources in your area that can help you get safe.
You may also want to look into taking a self-defense course. Some classes include disability-aware lessons modified for people with limited mobility that can help you develop the skills and confidence you need. Look in the Yellow Pages or online.
It is your right to not be abused. It is your right to be safe.
Lene is the author of the award-winning blog The Seated View.