I’ve talked a lot about my mental disabilities here, but not much about my physical ones. I’ve stated before I was born with Spina Bifida and use a wheelchair.
Earlier today I was reading this article it inspired me to write the following post.
I grew up in an able-bodied world dealing with ableistic views at every turn.
The entire length of her pregnancy my mother didn’t know I was disabled. She said it never occurred to her I wouldn’t be ‘normal’. She never had an ultrasound or any other test that would have identified I was different.
The day I was born, before she’d ever seen or held me, she was surrounded by social workers telling her stories of the worst case scenarios of babies born with my birth defect.
A representative of one of the local homes for the disabled showed her a brochure on the life they could offer me if she signed away her rights to the daughter she’d never even met.
She was terrified, but immediately decided to keep me.
The worker then told her if she kept me she would be giving up any thoughts of any kind of life outside of taking care of me. She’d never have a job or friends again.
She said she understood and asked to see me. My mother would have never won parent of the year, but she tried to do the right thing most of the time.
My mom fought hard to get me into a ‘regular kid’ school when I was four. I had to go for intensive testing to prove I was capable of keeping up with the other kids my age.
I’d never realized I was different until my first day in kindergarten. My mom said that day changed me. I came home quiet, she couldn’t get me to talk about what had happened. I still don’t remember, but I’m sure I dissociated somewhere that day.
I remember the other kids being jealous of me growing up. I lived in a very small town in Louisiana. My school had a total of 700 kids from kindergarten to 5th grade. Our classes were small and everybody knew everybody and their parents probably too.
I was rarely at school between my multiple surgeries (18 by the time I was 11, 21 now) was a straight A student until middle school. While my peers were out at slumber parties, I was at home studying or recovering from surgery.
I used to think they had no idea what they were being jealous of.
They wanted to be out of school as much as I was and to have my grades; I wanted their social lives.
My mom had to fight for every single accommodation I needed.
A private bathroom so I could catheterize myself in peace. I needed a prescription to pee.
Ramps to get around the school on my own. Ramps were being handled like medication.
The ability to wear my braces and actually walk at school. (This one never happened in any of the six years I attended this school. I was forced to wear my braces to class, but never allowed to walk. I developed pressure sores from sitting in my wheelchair in my braces all day and had to quit wearing them so I could heal. Then the process would begin again.)
Extra time to get to and from class without being considered late.
Those were just a few of the things my school required a doctor’s PRESCRIPTION for. Not just a note, not a call or a fax, a PRESCRIPTION.
Yes they required a prescription in order to build a ramp, as if the wheelchair I was sitting in wasn’t proof enough of my need.
My mom would walk into my IEP before school started every year with 38 prescriptions all written by my specialists three hours away. They thought the school was being ridiculous, but that’s what I needed so that’s what I got.
Most of them were ignored until they caused issues for me. Then their reasoning was, “We didn’t know.”
They knew damn well what they were doing. After all it was them who required the prescription in the first place.
Middle school was when the teasing began. My grades started slipping and it was questioned if I should be put in special classes. My mom refused.
While my peers were going to parties and getting their first kisses, I was sitting at home watching my house fall apart around me.
My 6th grade year my mother tried to commit suicide. I can’t say I blame her with everything going on at the time.
I spent six weeks living with a family friend who I was never good enough for. She tried to adopt me before my mom was even in the hospital.
When she found out she would have to give up her career to take care of me she dropped the attempt and tried to push me into the local Catholic school.
They weren’t accessible at all and refused to make the accommodations I needed.
She gave me and my wardrobe a makeover when that didn’t work. My mother didn’t recognize me the ONE time in six weeks I was allowed to visit her.
Yeah, she was doing all this while my mother was still alive.
My hair had been cut, I was wearing makeup and my nails were done. Anyone who knows me knows that’s not who I am.
The day my mom got out of the hospital all of my belongings were piled on my living room floor. They were done with me and sent me home. I didn’t speak to them again for a year.
When I dropped out of high school after missing 18 weeks of school, my mom went to the local college to see about enrolling me in GED classes.
She was met with, “Can she do it? Why did she drop out? Are you sure she’s capable?”
I passed my GED with flying colors; without ever finishing those classes. I attended for a few weeks, but when their ‘wheelchair accessible’ bathroom stall didn’t allow me to close the door behind me and when the dean of the school questioned my tank top and shorts attire (he was looking for a reason to kick me out since once again my grades were A+) I quit.
I took the test without the classes and passed it. Even the person who administered the test for me assumed I wasn’t going to pass.
“Good luck.” She’d said, “Taking it again will cost you $30. You have to wait six months before you can try again.”
I only took the test once.
From the day I was born I’ve been fighting to not end up locked away somewhere. I’ve been fighting to be heard and I refuse to stop fighting until I am heard, respected and treated like the woman I am.
I’ve been fighting to prove I am worthy.
I’ve been fighting to prove that it’s my legs that don’t work not my brain.
I know a lot of people don’t mean any harm when they say I am an inspiration
Unless you know my story, unless you know who I am and what I’ve been through, saying that to me is plain out offensive.
I’m not an inspiration because I am alive or because you couldn’t handle being disabled or because you couldn’t imagine what I must have been through because I’m disabled.
It’s not inspirational that I’m out living my life instead of being locked away somewhere. Because that’s exactly where able-bodied society thinks I should be.
No it’s not inspirational that I’m disabled and living when you’d rather be dead than be me.
That’s YOUR problem. Not mine.
There’s absolutely nothing amazing about any of that.
Yeah, I’ve been to hell and back many, many times but it doesn’t make me inspirational.
What makes me inspirational is not knowing how to give up.
What makes me inspirational is my tenacity to always, always keep fighting despite the obstacles able-bodied people keep throwing at me.
What keeps me inspirational is knowing I’ll always have to face what able-bodied people throw at me and knowing I can do it.
You will always hear about other types of discrimination. Race, sexual orientation, feminism and how someone identifies will always make headlines, but until society stops viewing disabilities as a problem to be solved or hidden and starts viewing the people who live with disabilities as humans, as equals, we won’t ever get anywhere in this world.
My Dissociative Life Blog 