Letting go is a natural part of life. It is part of the cycle of existence and something we are often taught about through the metaphor of mama bird pushing baby bird off the nest and forcing it to fly. Sooner or later we all grow wings of our own and whether or not we have parents pushing us off the edge so we can test them out, chances are, we will look for a way to take off and fly on our own and live our own lives. The dreams and hopes of people with disabilities are no different as they relate to the desire to experience life in our own terms and exercising the right to own our bodies, our lives and our sexuality.
One of my observations as a person with a disability who grew up surrounded by overprotective family is that more often than not, the biggest obstacles impeding our way to independence begin with our family’s fear of letting go. I so remember my personal battles to own my body. Even as I became a legal age adult, I was often denied the right to make decisions about my body, my sexuality and my choices about how to live my life. I was nineteen in this particular memory, and was in the hospital to undergo some testing, can’t even remember what for. What I do remember is me reaching out to a female doctor and asking her for birth control pills. I had been sexually active for a while and, after all, I was of legal age. More than anything, I wanted to feel in control of my body. So, I was given a three-month supply of birth control which I put in my purse and planned to make part of my routine. I felt empowered. I felt like for once I was able to make a decision about my body that did not involve other people…that did not have to do with actions I did not necessarily approve of.
Growing up disabled, almost always, involves surrendering our bodies to doctors and family very early on, therefore body ownership is something we have to learn otherwise it might not be given to us the same way able-bodied people get theirs. There is no “rite of passage” that applies to disabled life when it comes to body ownership. With most girls, menstruation marks the beginning of womanhood, for example. The body becomes private and your sexuality becomes evident. Disabled girls’ experience of the body as it evolves into womanhood is often very different especially since privacy to practice body ownership might not be something accessible to us. Sometimes, needing help with personal tasks may make it more difficult to assert ourselves to take full control of what goes on with our bodies. While many disabilities may require us to need assistance to achieve some physical tasks, at no point in our adult lives do we stop owning our bodies. Yet, this is something many of us with disabilities are denied. No adult ever prepared me for anything having to do with physically “becoming a woman”. In hospital surroundings as a little girl I learned the “street version” of sex and such things when I heard the older girls talking and giggling about it. I formed my own assumptions about what my body will do or is supposed to do and otherwise freaked out about the changes as they were happening. I freaked out in silence when only one of my nipples swelled up at age eleven and in my thoughts I was convinced I was going to grow up as a one breasted woman. I had no adult I could talk to….nobody I felt comfortable asking if what was happening to me was “normal”. Maybe my crippled body was meant to not grow breasts….maybe this or maybe that. I was full of doubt and very scared.
Denying people with disabilities access to sex education and/or birth control only puts us at a disadvantage in our ability to be aware of our bodies, able to identify possible sexual predators, or understand the difference between healthy relationships and abusive ones. It disempowers our ability to feel in control of other aspects of our lives, leads us to developing a negative attitude about sexuality and otherwise contributes to the oppression of our general existence. That day with the birth control pills, I felt, for the first time, in charge of my body and willing to take responsibility as a sexually active young woman. However, the feeling did not last long when later that same week, my mother spotted them in my purse and said that was not something I needed, and took them away. I couldn’t argue with her since admitting to being sexually active was something I did not want to discuss with her although she already knew….mothers just have a way of knowing, I guess. She took the pills away although I had told her they had been prescribed to help regulate my cycle. She insisted otherwise.
We have to learn how to assert ownership of our bodies as it is not something that will be given to us voluntarily. Parents, family, close friends, and society in general will insist on protecting us from our own sexuality. Parents of children with disabilities often assume the role of being the parent of a “child” even after the child becomes an adult. Letting go is something very difficult for most of them. Our personal liberation as people with disabilities begins with the realization that we are the only ones living in our bodies. Our bodies, never cease to belong to us no matter how severe the disability may seem to others. Parents and family protect us from reality in the name of love without accepting that we, ourselves are beings of love and we deserve to be equipped with the knowledge necessary to be loving and responsible with the fertility of our bodies. Disability never equals lack of natural sexual desire. The most important lesson we must learn about our sexual hunger is that it’s normal, and that we own it.
“….and on my own I learned
about sex and love
and confused the two at times
as I found myself
trying to define womanhood
in the white, heterosexual, able-bodied
impossibility of things
because I was led to believe I will never have sex,
never get married,
never have children,
never grow up….
But I did grow up
and I am real…
defined in my own rebellious kind of way
because I became femenista,
disabled woman of color
who grew poems and children
in her womb…
poems and children
in her womb….”
Excerpt from Maria R. Palacios’ Sins Invalid 2009 piece “Hunger”.