One of the most common issues we face as women with disabilities is establishing or re-establishing ownership of our bodies. Many of us are promptly conditioned to feel like our bodies do not belong to us. After all, an array of doctors, personal care attendants, providers, family members, physical therapists and many others often treat our bodies as if we were void of the right to personal space.

It is difficult to have “personal space” when we depend upon others for assistance with basic care such as bathing or dressing or getting in or out of bed. There seems to be a certain level of disassociation when we must surrender our basic care to the hands of other people. This can be especially true for people with very significant disabilities who depend upon a provider or attendant to achieve basic physical care. It becomes easier at some point to not think of our bodies as our own while others are handling it and/or when certain body parts no longer communicate with our brain and physical sensation is not present.

However, disability may affect our ability to physically care for ourselves, at no point at all do our bodies stop belonging to us. Needing help with getting dressed or other daily living tasks does not mean we have to surrender ownership of our bodies. Quite opposite, needing help should actually mean that we must become more in tuned and more in control of how our physical needs are met. Personal independence is not necessarily reflective of how much we are able to do on our own, but rather on the quality of life we are able to enjoy through acquired assistance and support. The medical model which views people with disabilities as a problem that needs fixing will quickly view our “broken bodies” as something that can be objectified. Doing so makes it easier to justify seeing those with disabilities as less worthy of self-management and the rights to body ownership.

Many of us with disabilities will sometimes “divorce” certain aspects of our bodies as if they did not belong to us.

I believe this to be, in part, our own internalized ablelism as we struggle to identify with other women and with the rest of the world. We can get pretty good at lying to ourselves and, if possible, trying to “pass” as less disabled when it comes to sex and intimacy.

The poem I share below is a good illustration of such and I actually wrote it for Sins Invalid in 2012. Sins Invalid is a performance project that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized. Since 2007, my involvement with Sins Invalid as a performing artist has brought me to share many of my personal experiences as a sensual and sexual woman with a disability, and to do so on stage. The beauty about the piece below is that shortly after performing it, I got back onstage and performed a very sensual and provoking “Peep Show” in which I actually get partially undressed defying my own fears and showing my legs in a very sexy striptease.

Undressing Love

I’m not sure how I got

to where I am right now

I mean loving this body

and loving

with this body

this redefined version

of beauty…

beauty I share carefully

even when I call myself a Goddess,

and even when my words

can radiate power,

there are parts of me

I’m not ready to share

with anyone.

And I say ready

because I have learned

to never say never

because doing so

is like challenging life

to make us break that promise.

Never! I used to say.

Never will I show

the deep scar on my back.

Never will I share my thighs,

my narrow hips,

my curved spine,

the ragged edges of me

this body I thought

couldn’t speak Love.

But it does. My body speaks Love

fluently

although it first learned to do it

in the language

of able-bodied lovers

sometimes

living a lie to do it

hiding under the covers

to conceal the scars

or faking shyness

disguising my crip side

as much as I could

using the magic of breasts

to distract my lover’s hands.

Yes

my breasts have always been

my magic Aces

taking lovers places

far away from my legs.

I spent years

trying to learn new tricks

new ways

to deceive myself

and my lovers

enchanting them with my lips,

not letting them see too much

of the way I grab my legs

carefully lifting them up

to remove a skirt

and allow love to fit

into my well of passion

and although I’ve become a daring lover,

I still use caution

with some parts of me.

I have overcome

the fear of my scars.

Lovers now caress

the silky flesh of my thighs.

They get lost between them

until their mouths smell and taste

like woman

this woman

this crip woman

who undresses her soul

and her body

with a lot more honesty now

than once upon her youth.

Still…there are parts of me

I’m not willing to share,

parts of me that still fear rejection

body parts wounded by ignorance

ignorance that left them fragile

and unwilling to trust.

And I just will not repeat

the things said to my feet

to make them so afraid to love

so afraid to share.

Maybe they’re just too aware

of a world that reacts with fear

fear of skinny legs

and tiny feet that can’t walk

and that’s why mine will not talk

to anybody but me.

And they do talk

to me.

They speak

in their soft little girl voices.

Do you love me? They ask.

Am I pretty? They say.

I do love you. I respond. And you are

beautiful.

I touch

the soft velvet skin

of my legs and my feet.

How delicate they are.

How innocent they are

despite the horrors

they were forced to live,

despite the orthopedic shoes

and braces

that once imprisoned them

or the hard cast

that made nightmares itch

and monsters crawl

under the sheets…

the memory of white coats

and indifferent hands

treating my legs as if they were

just another example

of what a cripple looks like…

another example

of what a cripple looks like…

another example

of what a cripple

looks like.

The polio ghosts of my early years

can echo such things in my ears

when I’m about to love someone.

That’s why no lover of mine

has ever touched

the sacred nudity of my legs.

No lover of mine

has ever loved

all of me.

When I undress myself,

I do so knowing

there are those who will think

I’m not complete

for not sharing my feet

with the world.

But the truth is

some truths

are meant to stay personal.

Some things are meant to be loved

privately

for a very long time

before we’re able to trust

and really

let go.

And I AM whole.

and I am complete.

My body is the reflection

of the Great Goddess as a crip.

With my unusual curves

and my immobile feet

I know I have always been

a landscape

of Love.

In reality, we are all a landscape of Love, but we must recognize and embrace our differences as beautiful in order for us to feel this truth. Those who think of our bodies as broken goods will also perpetrate the myth of asexuality as it relates to disability. While most people with disabilities are as sexual as anybody else, the myth about not owning our bodies is one of the most damaging ones but especially so when we, ourselves, believe it to be true. The powerlessness that comes from this can lead to years of self-doubt and years of struggles with learning how to assert our personal rights.

It is more difficult to know how to establish healthy boundaries in an intimate relationship if we don’t feel to be in control of our physical selves. It is very important to practice assertiveness and learn to remember that no matter who is lifting us or driving us or dressing us, our bodies and our physical needs will always belong to us. This sense of empowerment will take us closer to being able to establishing healthy intimacy with a lover. Setting boundaries and being very clear about our physical needs and rights is key to our ability to be successful lovers.

Boundaries are important to all relationships. It is often more difficult for those of us with disabilities to establish healthy boundaries especially as they relate to our bodies and our physical needs. Many times, when we depend upon others for aspects of our personal care, losing sense of boundaries can be easy. We can get dangerously used to other people making decisions about our bodies and our lives and whether we like it or not, we can get settled into the comfort of routine allowing others to decide for us. Setting boundaries which enable us to maintain control of decisions affecting our lives is an important step towards empowerment. This will spill into all areas of our lives including and especially so as it relates to intimate relationships.

A lover or a partner should not be someone who controls how we live but rather somebody who enjoys sharing time with us while respecting our individuality. If we lack experience saying no or making decisions on our own, chances are that when we fall in love with somebody, we will not be able to adequately express our wants and needs clearly enough to form a bond of mutual respect and equality. We must realize and understand that we never stop being whole no matter how much our bodies may seem to betray us. As it relates to love and intimacy, we have the right to be careful and cautious. We have the right to determine how we move, how we share, how much we give or how to express our needs and our desires. We are in charge of our bodies and our lives and we never cease to be whole even if the world may perceive us as “broken”.

Intimacy always involves risk. Being intimate with somebody whether it is physical or emotional means having to expose certain aspects of our lives and ourselves which we may or may not feel comfortable sharing. It takes courage to be “real” with somebody else and we must ask ourselves how far we are willing to go to do this. It takes quite a bit of self-exploration at the emotional level to be able to break down the walls we so many times build to protect ourselves from getting hurt. When we dare to say yes to intimacy, we are giving ourselves the opportunity to grow through such experience. I have learned that it is important to have the courage to give ourselves permission to take such risks.

However, it is also important to remember that saying yes NEVER means having to do something we don’t feel completely comfortable doing. We have the right to say no. We have the right to hold back and withhold parts of our lives or our bodies which may feel vulnerable for whatever reason. Saying no does not make us inferior or weak. We don’t have to prove anything as women or as lovers. It is better to be real with ourselves than to lie for the sake of others.

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About our contributor:

Maria R. Palacios is a poet, author, spoken word performer, workshop facilitator, polio survivor, public speaker and professional presenter who uses the power of her words to motivate and inspire her audiences. Her work centers around women’s empowerment and she has extensive experience in the field of social justice, disability and feminism, sexuality and self-esteem. Maria R. Palacios is the author of a now out of print feminist collection of poetry, The Female King and has also published multiple works including Criptionary, Disability Humor and Satire, and two empowerment journals for women and young girls. Maria is the founder of Houston’s Annual Women with Disabilities Empowerment Fair and currently serves as the Community Outreach/Information Coordinator for the Houston Center for Independent Living. Her involvement with the Disability Rights Movement takes her back to pre-ADA advocacy as Maria was one of the Capitol “crawlers” in the now epic ADA march of 1990.

You can find Maria on these social platforms.

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Here’s another article that might peak your interest. It’s all about men.

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