When Carolanne was faced with the marriage penalty she had to choose between SSI benefits and her right to marry.
As a gay woman, I grew up believing I would never be able to get married. But in 2015, the Supreme Court of the United States of America made my wildest dream come true – or so I thought. I assumed I was in the clear once same-sex marriage was legal. When I was ready, I would be able to marry the love of my life. I was wrong. It wasn’t until recently I learned that chronically ill and disabled people do not have the equal right to marry. While it’s perfectly legal, marriage comes at a great cost. That cost is “the marriage penalty”.
Most government assistance programs are income driven and you only qualify if you make below a certain annual income. If you receive Supplemental Security Income (SSI) and Medicare, you’re cut off once you get married. It’s important to note that I am not talking about Social Security Disability Insurance (SSDI) which has a whole different set of rules.
After you’re married, your spouse’s income is counted as yours and disqualifies you from assistance. Earned income (any money you make) and unearned income (any money your spouse makes) both factor into what you receive for SSI. So, if your spouse works, you become ineligible for assistance. That means no more monthly checks to help you pay for daily necessities, rent, food, etc. and no more insurance through Medicare and Medicaid, even if your spouse doesn’t have insurance. How can the government cut someone off from a program they obviously need and rely on?
This financial burden creates an unimaginable amount of stress on a couple. As a disabled person, you must make a choice: be legally married to the love of your life and be straddled with an obscene amount of medical bills forever or never marry and continue to receive assistance. For most couples, they don’t have the privilege of making that choice. It’s simply impossible to pay out of pocket what was once covered by SSI and Medicare. Unless your spouse is incredibly wealthy and can afford the thousands of dollars each month in related medical bills, losing assistance is crushing. It’s demeaning and devalues the love of two people. Disabled people are forced to choose between getting care and getting married.
I haven’t found a way through this twisted bureaucracy, but there are couple ways to move forward with your life if you find yourself in this tough situation.
Be an advocate and make your voice heard. Only if disabled people demand to be treated equally will change happen. This may be intimidating or scary to do at first, but lawmakers need to hear your first-hand experience and how the marriage penalty affects you personally. Put a name and face to the issue for them. You never know what kind of ally you can make in the process!
This option requires a lot of grieving and acceptance but if you can get there on an emotional level, it’s the best solution disabled people have as of right now. You can do all the things normal couples do: get engaged, wear a ring, have a ceremony with friends and family, live together and create a life together. You just won’t receive the tax benefits of being a legally married couple. But the trade off of still receiving the desperately needed assistance is a good one.
Personally, I’ve chosen to do both options. As someone who has a Bachelor’s Degree in Political Science, the first option was a no-brainer. I’ve written letters to my representatives and asked for meetings to address this pertinent issue. I bring up the marriage penalty in the support groups I belong to, hoping to spread awareness and shed light on why this conversation needs to be had.
The second option of emotional marriage but not legal marriage has been a harder pill to swallow. I feel angry that disabled people not only deal with accessibility issues, but must also face this unfair choice. My girlfriend is stripped of her right to marry AND she lives with the hardships of my disability. That make me feel guilty. I’m also bitter that my life is so much more complicated than my peers.
But by sharing my story, I hope it inspires others to act. There is strength in numbers. While I still dream about being fully equal in the eyes of the government and society, I will be content with no official papers or documents if it means I still get SSI and Medicare. I don’t need a piece of paper to validate my love but I will fight for my dream of full equality.
Carolanne Monteleone is a disability advocate and professional sick person. Between blogging her experiences with chronic illness, running a small Etsy business of handmade feeding tube accessories, and helping others transition into the world of disability, she spends what little time she has left being a stay-at-home dog mom to an adorable beagle, Quinn. Carolanne enjoys sewing, shopping for candles, and binge watching medical dramas.