How Did I Get Here?

I wasn’t always blind. I was a healthy baby until I was a few months old. In pictures, my eyes didn’t look right. Rather than the typical red-eye reflex, my pupils appeared like cat’s eyes with a white ring around them. Whenever I was in direct sunlight, I’d cry and cover my eyes. My parents took me to several doctors, and after lots of tests, I was diagnosed with retinoblastoma, a rare childhood cancer. My eyes were removed because of the advanced state of the tumors, and I’ve worn prosthetic eyes since just before my first birthday.

Words have always been important to me. For obvious reasons, picture books didn’t do much for me. I wanted more complex stories, even as a toddler. My busy working mother read to me every night, and when she couldn’t, she’d put a book on tape in my cassette player while she tucked me into bed. When I started to learn Braille at around three, a whole new world was unlocked. I didn’t have to wait for people to read to me. I could do it myself!

I wanted to tell stories. I had to tell them. You could usually find me clacking away on my Perkins brailler, page after page of thick paper piling up next to me. When I got an accessible computer, I wrote even more. I completed NaNoWriMo twice in high school. I was all set to study journalism and write.

Then I got depressed. And the words stopped. For approximately 12 years.

The depression had lots of causes. My older sister died suddenly and unexpectedly. I went to college in a big city far from home and was very lonely. And my brain chemistry is just a mess.

For years, people have been telling me to write. “You have so much to say! Your stories are so funny, and you have such an interesting perspective on the world.” Depression Brain was like, “Ha, that’s rich. You have nothing of value to say.” But over the past few years, I’ve realized a few things. Firstly, depression lies. Secondly, I am good at writing about one thing; my own experiences. Maybe I can’t write fiction like I once did. But I can tell my own stories and make them relatable. People were right. I do have an interesting perspective on the world, and why shouldn’t I share it?

I’ve always been a pretty sexual person. My mom wasn’t great at talking to me about sex. Instead, she ordered me a book from The National Library Service for the Blind and let the book tell me about it.

I still remember the day that book arrived in the mail. It was on one cassette, and my fingers trembled as I undid the latches on the case. I plugged in my headphones (no one could hear me listening to a book about sex!), crawled into my canopy bed, and started to listen. I explored my own anatomy and was blown away. So that’s why it felt so good when I touched myself there. I had a clitoris!

When I moved out of my mother’s house, I bought my first sex toy. It was a jelly rabbit monstrosity. Present me cringes at the thought that I put that thing in my vagina several times a week. But I didn’t know any better. I didn’t have access to information about sex toys, and even though I was living in Boston, close to an amazing sex toy store, I didn’t feel comfortable asking friends to go with me.

I didn’t date until I got to college, but that was mostly because I grew up in the middle of nowhere and no one wanted to date the smart blind girl that they’d all known since kindergarten. But also, people are afraid to date people with disabilities. I have gotten so many messages on OKCupid over the years that amount to, “You seem awesome, but I can’t date you because your blind.” This used to make me sad, and depression would rear it’s ugly head and tell me how worthless I was. But as time has gone on, the “I could never date a blind person” messages just piss me off. If I can show that I’m a real live sexual being through my writing, and even if I only convince one person that disabled people can and do have sex, then that’s what I’ll do.

I face so many barriers every day. That isn’t meant to sound whiney or to evoke pity. It’s just the reality of living with a disability. From inaccessible websites to being treated like a child by the public, every day is an adventure. When it comes to sex and sexuality, my goal is to break down those barriers. I want toy manufacturers to consider that teeny printouts of their manuals aren’t suitable for all their customers. I want sexual education materials to be readable by everyone. I want health care providers to acknowledge that disabled people have just as much right to sexual healthcare as able-bodied folks.

If I stay silent, no one learns anything. If I share my experiences and my stories, then I can change the world, even if it’s only a small change. I’ve let anxiety and depression and internalized ableism take my words away from me for long enough. I’ve stayed silent long enough.

4 thoughts on “How Did I Get Here?

  1. You have always been amazing Amanda. I sold toys for many years and have never had a problem talking about sex. I would have talked to you years ago if I knew but mom probably would not have liked that. Sex is so important in our lives whether it is with someone or by ourselves. Glad you feel comfortable to write about it

  2. Hi Amanda!
    I’m a guy from Norway who found your blog through Twitter. I was also diagnosed with retinoblastoma at six weeks, and had both my eyes removed by two years. I found a lot of resonances in what you told here. I have been fortunate to avoid the depression you had, but I’ve definitely had my dark moments due to the world not being exactly compatible with my blindness. I think it’s great that you’ve started this blog, and I look forward to reading more of what you write. Keep it up!

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