The Mighty Logo

How to #LoveYourSpouse When You Can't Marry Without Losing Disability Benefits

The most helpful emails in health
Browse our free newsletters

The #LoveYourSpouse Challenge has been all over my Facebook news feed the last few weeks. Happy couples share photos of their best moments, with a friend or two tagged so they too can join in on the fun.

But for people like me and my boyfriend Bill, the challenge is that we can’t be spouses. Getting legally married carries many risks that could be potentially life-threatening or economically difficult, given the nature of our disabilities.

I am legally blind, and able to work longer hours and still collect a disability check. Bill, on the other hand, has cerebral palsy, is on SSI and his work hours are limited to one, sometimes two days a week. Working while receiving benefits requires striking a careful balance, one that marriage completely upsets. When a couple gets married, their dual incomes become one, and the maximum allowable income for a couple is lower than each could earn separately. I would risk losing Medicaid and Bill, whose needs are greater than mine, would risk losing funding for his in-home nursing and care.

I found this out the hard way when I tried to marry my ex (who has bipolar disorder) a few years ago. I had a gut feeling there would be a problem, and after making a trip to the Social Security office, my fears were confirmed.

Since my ex was on disability and I was on SSI at the time, our income would be rounded out to about $1100 a month, cutting my check down 75% and potentially causing me to lose Medicaid. At the time, I was a college student in between jobs and needed medical insurance, so the idea of marriage became an afterthought until we could hold stable full time jobs, which never came to be.

In my current situation, the tables are turned. Marriage could lead to a costly and potentially bad situation for me, but it would harm Bill even more. I love Bill enough not to marry him despite us being in love. The laws simply won’t allow it at this time. And it breaks my heart for the both of us.

It can be harder for people with disabilities to find someone with whom to share their life, so we feel lucky. Commitment ceremonies and listing each other as emergency contacts just doesn’t feel like enough. We want the real deal. We want to be equal in the eyes of the law and God. But at what cost?

Some people with disabilities get legally married, but they usually have high incomes or financial backing from family who can hire care privately. In our case, we don’t have that support. I want Bill to live a healthy life, and unfortunately, that means we have to remain “single.”

Like other couples, marriage is more than a financial vow we want to make; it’s about being there for one another in the best times and the worst times, in sickness and in health, till death do us part. Our love should be celebrated, not punished.

There have been great changes in marriage law in recent decades. Interracial and LGBT couples now have the right to marry without discrimination. Don’t you think disabled people deserve to have that opportunity as well?

Bill and I hope one day the laws will change for the better. But until they do, the only way to love and care for him is to remain separate, so he gets the care he needs. Despite this, our love remains strong, whether we have a piece of paper with his last name at the end of mine or not.

Although that piece of paper makes a lot of difference, we’ll still brag about our relationship on Facebook, and annoy people with chain posts for a week. You know, like the cool kids.

But in all honesty, who needs a week when you can have forever?

And forever is what we strive for every day.

Follow this journey at Legally Blind Bagged.


Originally published: August 19, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home