The script for heterosexual marriage in our culture is as follows:
Step One: Boy meets girl
Step Two: Boy wins girl
Step Three: Boy and girl become husband and wife
Step Four: Husband and wife buy new home
Step Five: Husband and wife become parents
Step Six: Father supports family while mother stays home with the kids
Step Seven: Family lives happily ever after
My husband and I have never been very good at following cultural scripts. We met online, in a chat room about TMNT. We fell in mutual love, despite the fact I’m a Raphael fan and he’s a Leonardo fan. After a few years, we tied the knot – literally – in my dad’s back yard.
|Our ceremony was a handfasting ritual. Our hands were lightly tied together with braided ribbon of silver (moonlight), gold (sunlight) and white (life force).|
Around a year after we were married, we bought our first house, but due to circumstances beyond our control, my husband had to go on disability for over a year. Suddenly, I was responsible for catching up on the bills I had thought he’d been taking care of, somehow holding onto our house and making sure he got through his illness.
I worked at a retail job at the time. I couldn’t even get thirty hours a week, since the store didn’t want to pay the benefits required for full time employees. If it weren’t for the amazing ongoing support of our families, we wouldn’t have made it. As it was, our debt was growing, we were facing foreclosure and something had to change. I had to step up.
Disability payments do not pay mortgages, even with a just-over-minimum-wage worker in the picture. So, I got a full time job at a local laboratory, setting various drug testing accounts up for hospitals, businesses and assorted other organizations.
I was so focused on figuring out how to get out of the hole we were slowly sinking into that I didn’t think to associate dyslexia with intense data-entry required by the job, or SPD with the constant distractions. I had to pay the bills, and for over five years, that’s what I used the job for.
I was constantly getting in trouble for mistakes I couldn’t help, but didn’t feel safe in disclosing my dyslexia. I had been bullied for it in the past, and I was terrified of unemployment.
What if they fired me because of my disability? What would we do then? I’d never been fired in my life, and with how delicate my mental health was becoming, would I be able to handle it?
I wasn’t getting the therapy I needed, despite having insurance, and stress began to manifest physically. My stomach grew hyper-acidic, migraines began attacking me several times a week and chronic tendinitis set in. I was in near constant pain and everything I put in my mouth made me nauseous.
|Taken during an escape to the outdoors. The dark circles under my eyes were an indicator of my declining health.|
Thankfully, I learned how to budget, and I gained confidence in my writing skills. I was able to save up enough money to last us for at least a year while I worked on my career, even without another income. By then, my husband was established with a new company, and I finally left my old workplace.
There’s so much that could be said about that time in our lives. We were pitied, judged and scorned. I often got hit with the line, “Why isn’t he supporting you?” when someone asked what my husband did for a living.
I faced almost constant harassment during my commute on mass transit, too. There was one guy who would pull his car over every time he saw me waiting for the bus to try convincing me to have an affair with him. There were former neighbors who would follow me and hit on me every chance they got. One had the nerve to try groping me at one point.
My husband also had a hard time, though he never talked about it much. Sexism goes both ways. He was supposed to be providing for me. He was supposed to become a father and pursue his career goals. That wasn’t happening due to his illness, and it couldn’t have helped his mental health or recovery.
What I was doing, hiding my dyslexia from the world, was just as dangerous as what other people threw at us back then. In our own ways, we fell victim to the stigma our culture puts on disability in general and invisible disability in particular.
It took independent research to realize that we were both protected by the ADA. Back then, I thought the ADA only applied to physical or sensory disabilities. Invisible disabilities like ours were never included in the literature I saw in break rooms or discussed in the media.
We both learned a lot from those experiences. Chief among them is that the real story of marriage, gender and disability isn’t told by the fairy tales we were raised with. Women can be the sole or primary earners in a family, and many are today. Men are allowed the weakness that comes with humanity. Disability can be strength.
On a personal level, I discovered a deep well of power I hadn’t realized was there.
Yes, our culture labels me as a disabled woman, but so what? Labels are for clothing and warnings on power tools. I’m a person who’s full of potential. I’m not here to conform to what the ads want me to be or what those old stories told me I should be.
We still haven’t stuck with that original script. We have no children, and while his income is now the primary one, I’m building back up to what I had been making at that horrible job. Eventually, I will surpass it, but more importantly, I’m happy with what I’m doing.
It doesn’t matter that we don’t conform. All that matters is that we continue to live our lives as best we can with what we have.