Editors Note: For many of us with disabilities, our relationships with our bodies are fraught with mistrust and fear. Our ability to protect ourselves may be compromised, or our own ability to believe we own ourselves is in denial. These “lessons” which the author lays out for us, are warnings to change the way society thinks about disabled bodies. To stop believing they are public property. To begin acting as though those with the disabilities are people and not objects.

By Bernadette – Trigger Warning

My disability is not the reason I experienced what follows, but certain lessons I learned in childhood played a part in my reactions to certain events.

Lesson One – My body was not my own.  While other kids learned to share toys, I learned to lay on tables and be poked, prodded, and stretched.

Lesson Two – Even though it was technically my body that didn’t mean people would treat me like I was anything more than a body.

Lesson Three – Pain should be swallowed.  I had major surgery as a young child.  Recovery was excruciating.  I screamed and cried, I don’t remember all of it, but this was a great source of amusement for my family.  So, from the age of nine, I tried to cry as little as possible.

Lesson Four – “There’s always someone who has it worse.”  Do your legs hurt?  At least you have legs.  That was another oft repeated phrase.  Complaining and self pity were useless and selfish.  They were not tolerated.

Lesson Five – I must be self-reliant.  People don’t pick you up when you cry.  You must pick yourself up.

Lesson Six – Emotional development is ignored and mental development is only gauged by how smart you are.  For all the specialists and attention given to my eyes, ears, body, speech, and more, no one seemed to care too much about how I developed emotionally or how I was coping with everything.  My brain was considered on course since I was academically smart.

Lesson Seven – Finally, and perhaps most important was the lesson about saying no.  “No” was not a word I was allowed to use.  Neither was “can’t.”  It didn’t matter how much it hurt, it didn’t matter that I was seven.  All that mattered was that I not refuse to do whatever was asked of me. Being seven, I never questioned why I had to do these things, from doctors to family to therapists, the answer was obvious, and always the same.  It was for my own good.

For the first six months of my first relationship, things were for the most part, normal.  There were times I had been uncomfortable.  I hadn’t wanted to date in the first place, but my female relatives seemed very keen on the idea.  When he wanted to hold hands at school, I let him.  When he wanted me to kiss him because we had been together a month, I obliged.  When he tried to teach me how to French kiss, I obliged.  When he told me he loved me, I was taken aback, but I didn’t want to hurt his feelings, so I said it back.

But our relationship was more than those occasions.  It was nice to have someone to talk to, who seemed to appreciate me, and who wanted to get to know me.  Though I couldn’t quite pinpoint it then, it was nice to have attention for more than my disability.  We weren’t raised in an intense purity environment, but we were both from church going families.  And we believed we would get married.  After I turned sixteen, things began to change.

One day he asked to see my scars.  I will always remember this moment.  I felt uncomfortable.  I didn’t want to show him and I would have preferred he not ask at all, but he had.  It sounds stupid, but I tried to tell him I didn’t want to, but the word was stuck in my throat.  So, I rationalized, if I were in a bathing suit, he would have seen them, so many other people had seen them, so I showed him.

And from there he wanted to be more physical than I did.  Any time he could touch me he would.  I didn’t want to do that, but it seemed so important to him, that I let it go.  And I really believed I was going to marry him, and I think, at the time he did too.  Our parents felt we were being improper and at the end of my sophomore year they forced us to spend the summer apart.

When fall came it only fueled our desire to be together.  Except his desire had become even more possessive and physical.  I don’t remember much about the first time we had sex.  He didn’t force me.  I just laid there and let it happen.  I had said no at first and he seemed so angry and hurt that I agreed.  It wasn’t romantic, I didn’t enjoy it, and we were in a car.  I just lay there and let it happen.  And of course, I knew there was no way I could break up with him.  After all, that’s what I was raised to believe.

My parents knew I was having sex, so they were abrasive, and I felt they wouldn’t help me.  I let them believe the easier truth, that I was hormone filled.  I endured their judgment and disgust.  It was easier than the truth, and a large part of me still didn’t want them to think badly of my boyfriend.  I cried hysterically on my knees and prayed in the shower because I didn’t know how to fix what had happened.  I clung to the desperate fantasy that my boyfriend loved me.  Because if he didn’t love me, what did that mean?  I hadn’t said no so I didn’t see what was happening to me as rape, date rape, or abuse.  It was my fault.

Sex was ever-present in my life.  Whenever he could, we would.  Empty classrooms, fields, parking lots, the car.  I went along with it.  Sometimes he would complain that sex was difficult.  It was difficult because I was not aroused.  It was also because, as I said, I did my best to lay and pretend to be anywhere else.  When he started criticizing what I was doing, or wasn’t, I obeyed his commands and followed his instructions.

Slowly, I did start to fight back, in very small ways.  When he told me to lose weight, I ignored him.  When we started reading the same books, I finished them first.  He was rejected by his dream school and I applied, and was accepted.

When he went away to school and cheated on me with a married woman I was devastated, but didn’t tell anyone what happened.  I was unwilling to let go.  When he came home for winter break, he pretended we were still together.  I was so desperate to have him back that I endured more sex accompanied by him telling me how much better his married lover was.  I listened to him tell me how she had a prettier face, but I had a nicer chest.

He got another girlfriend; he gave me her email address because he thought it might be fun if we had a threesome.  I instead took the opportunity to tell his new girlfriend about his past and warn her off.  In January, I continued to tell people we were still together, because I knew I had done things I shouldn’t have, and didn’t want people we knew to know what had happened.  But I stopped talking to him, and slowly, but surely began making friends and enjoying life.

When I saw him again that summer my mother told me I should say hello.  She knew only the mildest of things he had done wrong, none having to do with my body.  But, perhaps as a final act of defiance, I walked over to him with my head held high and said hello.  He dismissed me with a wave of his hand, but it was a small victory.  I had acted with maturity.

I still feel intense shame about what happened.  I struggle with feeling like I deserved what happened because I didn’t do a better job stopping it.  I hate that I’m sure this man feels no regret over what he has done.  I still worry that because I took so long to tell my family the truth that they don’t really believe me.  And even now their tone betrays a slight level of doubt when the subject comes up.

I know that a big part of the downfall of my next relationship was due to what I experienced and I ended up hurting someone I loved.

I’ve never been bothered by the scars from my surgeries, but I hate the small scar on my knee that came from sex on a concrete floor.  And I hate that even now, in what I this very safe environment, I’m still afraid people will think I was the one who was wrong.