When I was a little girl growing up with cerebral palsy, I had beautiful long hair down to my waist. But when I was about 7 years old, my mom said I had to cut it, because it would be “easier for me and other people to take care of.” I was furious. I loved my long hair, and raged against her for reasons I couldn’t quite understand. In the end, I got her to agree to let me have it shoulder-length. Throughout my childhood, I would put off haircuts as long as possible, and when I went to college, I started growing my hair again. I’ve worn it relatively long ever since.

Over the years, I have thought a lot about my hair. I wondered why my mother’s demand made me so angry, why I still feel hurt about it all these years later. And then I realized — as a person with a disability, my hair is more than just a fashion choice. It symbolizes something much more significant: my right to make choices about my body.

People with disabilities are often treated as if our bodies are not our own. This begins very early for those of us born with a disability, as we have to go through medical procedures we cannot consent to and may not fully understand. We are told that others know what is best for our bodies, and we have little choice about who touches us and how. Even though decisions about our bodies are usually being made with our best interests (or others’ perception of them) at heart, this loss of bodily autonomy can have a long-term impact on self-esteem and relationships.

Throughout our lives, we have to get help from strangers with the most personal tasks imaginable. I once tried to count up all the different personal care attendants I’ve had over the years. I stopped when I got to 100. For somebody whose job doesn’t involve a pole, an awful lot of people have seen me naked. It goes against my personality; while I don’t consider myself shy, I would be a very private person about my body if I could be. But I don’t have a choice in the matter.

Thankfully, many of the people who have helped me over the years were kind and caring. Some were indifferent. A few were abusive. Unfortunately, people with disabilities tend to be targets for abuse by people with bad intentions. I’ve experienced this several times in my life, including in a romantic relationship. I’ve learned from personal experience that abuse tends to begin with small violations of consent. These acts can be quite subtle, such as intentionally refusing to follow simple but specific instructions from a person about how to dress or care for them safely, and causing them pain and/or embarrassment as a result. The abuser generally cites “convenience” or “that’s too much work” as the reason for refusing to honor someone’s choices and needs, and may also make negative comments about their body.

In some cases, these actions are not malicious; they can stem from genuinely not understanding. Some individuals who are trained as “professional” caregivers may get the idea that the way they learned to provide care in school is the right way for every person. I’ve had to learn to stand up for myself and say, “No, that doesn’t work for me; this is the way I need to do things.” Most of the time, the person respects my autonomy. It’s when they don’t that problems arise.

Whether the cause is deliberate abuse or poor training, lack of bodily autonomy can slowly chip away at a disabled person’s self-esteem. It can make us feel guilty for needing help, for even existing. I know my body; I know what it needs, and I’ve taught dozens upon dozens of people with a variety of ages, strength levels, and body types how to help me. It baffles me that any person would come in and try to tell me how they are going to do things. Yet it happens.

On my recent, disastrous road trip with a caregiver who turned abusive, she showed early warning signs of refusing to help me in the ways I needed, even when I said it was causing me additional pain and fatigue. As we both became more exhausted and frustrated, she began to lash out emotionally with words and actions that pointed to what I believe is often in the minds of people who abuse those with disabilities: a particular, insidious form of ableism.

I apologize for the TMI nature of this next incident, but I want to make sure people understand the reality of my life. During the trip, the caregiver was helping me to the restroom. I had just gotten my period, but already had the needed protection in place. When she saw it, she looked repulsed. “I’ve never taken care of someone on their period before,” she complained. “Most people like you do something about it.”

People like me? I was completely shocked by her words. To make sure I wasn’t misunderstanding, I asked her to clarify what she meant. She said, “Well most disabled people take a pill or shot or something so they don’t get it.” I was so floored at that moment, I couldn’t express what I really wanted to say. I rattled off something about having tried various things and they didn’t work and caused problems for me, hoping she’d let it go. She didn’t. She angrily responded that I should “try more options” and “try harder.”

I was horrified. What kind of woman humiliates another woman for having her period? She seemed to be saying that as a woman with a disability, I should be expected to alter my body just to make it more convenient for my caregivers. Her concern wasn’t for my well-being; I wasn’t dealing with cramps or PMS, and she persisted in her demand after I told her my body reacts badly to birth control pills. She wasn’t new to caregiving; she told me she had cared for several other people before, though they were mostly seniors. And yes, she claims to be pro-choice — it’s all over her Facebook page. But it seems her respect for women’s bodies and choices does not extend to those of us with disabilities.

I have encountered many people working in health care fields who are deeply ableist and believe people with disabilities should limit our lives because our existence is inconvenient. They body shame us, and expect us to let others choose when and how we will have basic needs met. We are expected to respond with subservient gratefulness for whatever help we are given, even if we are treated disrespectfully. This attitude is deeply ingrained in the health care system. For example, although I try to avoid using home health agencies, I have had to do so on occasion when I was short of help, moving, or had an emergency. I found myself in that situation after I got away from the abusive caregiver mentioned above; I had help coming my way, but she wasn’t there yet. So I called an agency and asked for a female caregiver — someone physically strong enough to do transfers, able to drive, and who likes dogs. When I said this to the scheduling worker on the phone, she reacted as though I had asked for something extraordinary. She did find someone for me — and that person was great — but apparently she had to make several calls.

When the bare basics of my life are considered extraordinary, I believe there is a real problem with ableism in our health care industry. I feel like many people 18-50 years old can meet all the requirements I asked for, if given proper training on how to do transfers. I guess it’s no wonder the awful woman I traveled with had managed to work as a caregiver for years, with such low hiring standards at agencies. And of course, poorly trained workers aren’t taught to respect their clients with disabilities and are more likely to be abusive.

People who have worked in medically-oriented caregiving settings often don’t know how to react to someone like me. I live my life as I choose. If I want to do something, I figure out a way, and I don’t let my disability hold me back. I honestly don’t care if people find aspects of my disability inconvenient — I do too, but I’m not going to accept less from life because of it. I strive to be kind and treat those who assist me with respect, but I don’t respond with fawning gratefulness every time someone shows up and does their job. I expect people to work hard, behave responsibly while still having fun, and most of all, respect my body and my choices.

I wish supporters of women’s rights would recognize that for women (and men) with disabilities, pro-choice goes beyond abortion. My body, my choice means the right to be considered a whole woman even if you have a disability. My body, my choice means women with disabilities deserve equal access to gynecological care, and should not be pressured or forced into suppressing our bodily functions or being sterilized, as hundreds of thousands of us were during the height of the eugenics movement. My body, my choice means the right to have children if we want them, and to have our gender expression and sexuality respected whether we are straight, pansexual, or lesbian. My body, my choice means the high rate of domestic violence, sexual abuse, and caregiver abuse against people with disabilities must be acknowledged and addressed with the same dedication as violence against women without disabilities.

Pro-choice means the right to make choices about every aspect of your body from your hair down to your toes. I often see women with disabilities wearing frumpy, ill-fitting or stained clothes, and of course with short hair. Now granted, who among us hasn’t run out to the store looking a bit scruffy… but I often wonder if that’s really how they would like to look every day. Are they being given choices and support to buy fashionable clothes, wear make-up if they wish and have a hairstyle they like? Basic rights most women take for granted are often denied to us. That needs to change.

A friend and former assistant of mine has a very cool tattoo. It’s a braid of hair, shaped into a heart. In the center are the words “Long hair. Don’t care.” The tattoo symbolizes doing what is right for your body and your life, even if others may disagree or judge you for it. It’s a right we all should have, and one I continue to defend with my beautiful long hair and every other choice I make each day I live on this Earth with a disability. I hope if you know me, or if any other person with a disability is part of your life, you’ll defend our right to live as we wish. And when you say you’re pro-choice, make sure your respect for women’s bodies and choices extends to those of us with disabilities, too.

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Karin

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