Invisible marriage

Written by Marina Del Rey

We met in 1982. We were both students in college. We were both wheelchair users. At first, I didn’t like him, but really, I didn’t want to be in a relationship with another person with a physical disability.

His disability had a lot of the same accessibility needs as my own – like needing an attendant to help us with our activities of daily living.

No, I was looking for a man who was able-bodied and could take care of me. Well, truth be told, that was what my mother wanted. He dropped out of college and I lost track of him. Not that it really mattered, I thought, I really didn’t like him anyway even though, yeah, ok, he made me laugh. Yet, I missed him.

I continued on and received my BA followed by an M.Ed. I got a job, moved into an apartment, tried dating. I was lonelier than ever.

One day, riding the Special Transit bus home from work, he was there. A passenger out of nowhere. We started talking and, yes, laughing. When he got off the bus, he gave me his phone number and told me to call him sometime. I got home and tossed the paper with his number on my desk. I’m not going to call him, I thought. But I didn’t throw the paper away, either.

Months later, after a bad dating experience and feeling desperate to talk to someone, I called him.

Months of long talks followed, listening to music, hanging out, mostly just spending time together and laughing. I can’t think of anyone I was ever so comfortable with. He wrote poetry that moved me deeply and showed me a side of him that, well, shall we say, made me fall in love.

We decided to spend New Year’s Eve 1990 together. The deal was sealed. We were in love and going to get married.

Screeeeech! We heard our runaway love train hit the brakes. Wait a minute, we can’t get married! Because of federal regulations, we realized he would lose his HUD Section 8 accessible low-income housing, his Social Security Insurance (SSI) check, Medicaid, and attendant care! Although I had a well-paying, full-time job with the state, I certainly didn’t make enough to support us both. My income would wipe out his SSI, AND I would lose my attendant care too. Ohhhh shit.

A brief aside to explain why we couldn’t get married, aka, the SSI/Medicaid Marriage Penalty Laws:

SSI is a needs-based federal program that helps people with disabilities with little to no income. People with disabilities who marry can have their benefits reduced, if not completely cut. Loss of SSI/Medicaid benefits can be devastating, life changing, and even life threatening to a person with disabilities. Although I was not on SSI/Medicaid, my Attendant Care Service Provider agency followed the same guidelines.

If we married, our combined incomes would disqualify us from being eligible for attendant care services. Without attendant care services, we wouldn’t survive.

We started researching for loop holes in the regulations. We discovered that as long as we don’t claim to be a married couple or even a couple living together as common-law (referred to by SSI/Medicaid as “Holding Out as a Married Couple”), we might be OK.

With some trepidation, I bought a house, we moved in together, got a dog, but made sure we had a “separate” bedroom that was mine because, after all, we were (ahem) roommates.

We wore rings but could not claim to be married. We had a commitment ceremony, but could not call it a wedding. We got a dog but could not call it our child (lol).

We were happy for a while – 12 years to be exact. But like any other couple, we ran into issues and after trying hard to salvage our “marriage,” we separated. I “moved out” because we couldn’t say divorce. I think, in part, pretending not to be what we were caused some of the strain.

Today, when I am filling out an application and I get to marital status I see the choice boxes: single, married, divorced, or widowed. I hesitate…and then…check…single.


Marina Del Rey is pseudonym