Don’t Be Fooled: Love Hasn’t Won…Yet

On June 26, 2015, the US Supreme Court ruled that same-sex couples now have the right to marry in all US states. Many took to Facebook, Twitter, and other social networks to celebrate that the US had finally achieved marriage equality. Not everyone was ready to celebrate just yet, though. Alicia, who is blind, is intimately acquainted with the marriage inequality plaguing less visible minorities in the United States. While everyone is rejoicing that love has won, Alicia finds herself unable to keep quiet. While she and her fiancé (also blind) do not receive the hatred and scorn that same-sex couples do, they still suffer discrimination which, while much quieter, is just as meaningful. According to Alicia, we have a long way to go before #LoveWins. This is her story, so I’ll let her tell it.


When Meagan asked me to guest-post on her blog, I was honored. This issue is near and dear to my heart, but I hope to write out my thoughts without turning this post into a rant.
While my friends on social media were celebrating, I found myself furious. Marriage equality is not yet a reality. I know this because I cannot marry the man I love … and I don’t foresee a day when that will change.
The United States has marriage penalty laws that will affect anyone who is receiving government benefits. These include SSI (Supplemental Security Income), SSDAC (Social Security Disabled Adult Child), and, perhaps most importantly, Medicaid. These programs are income-based and, once a couple marries, that income is considered “joint”. Therefore, if you and/or your partner are receiving any of these benefits, marriage may put you over the ridiculously low income limit. This assumes that married couples have a higher joint income than they would if they were single but, as is the case with many disabled couples, this is far from guaranteed. Even with joint income, most of these couples are still unable to cover needs such as shelter, food, and medical care (especially the latter) without assistance. Given that a very high percentage of people living with disabilities is unable to work, these penalty laws prevent many disabled couples from getting married, despite their commitment to and desire for marriage. Social Security is sneaky about this. Program criteria states that if a couple is “holding out to the community as married”, that couple can be considered married for Social Security purposes, and lose their benefits. Unsuspecting couples–who accidentally find themselves within Social Security’s criteria for “holding out”—could lose their benefits, leaving them with very little recourse, if any.
My fiancé (Mark) and I both receive Social Security benefits and health coverage through Medicaid. If we were legally married, our cash benefits would be cut dramatically if not entirely, and we would both certainly lose our medical coverage. I have several physical health issues that would make my situation precarious. Even worse, my partner has cancer requiring aggressive expensive treatment. There is no way we could afford this if he lost his medical coverage, which forces us to choose between marriage and his cancer treatments.
I hasten to point out that these laws do not only affect people with disabilities. They unfairly penalize the elderly (often low-income) who are only able to cover their increasing health needs with programs like Medicaid. A friend told me a story about her Grandmother, who had lost her first husband. A year later, this elderly woman met a man she wished to marry. Marriage wasn’t an option, however, because they would both have lost their medical and Social Security Benefits. The choice: stay unmarried, or forfeit the funds that would cover essential medical and living expenses. The solution, whether for a young disabled couple, or an elderly couple with no disability at all, is to cohabitate, and make it abundantly clear to everyone that they are either roommates living together for economic reasons, or nothing more than boyfriend and girlfriend. I, like many others, cringe at having to refer to someone I love more than my own life with the same term a high school couple dating for a week would use for one another, but it is what we must do to secure our living and medical expenses.
When I first started discussing this issue on social media several months ago, I was surprised by the reactions I got, particularly from those within the disabled community. Many asked me why I was so upset: after all, Mark and I were married in our own hearts. Why did we need a silly little piece of paper? Weren’t our own feelings toward each other good enough? The answer is no. The even more infuriating thing is that many of the people giving us these platitudes were the same ones that were telling LGBT couples to keep fighting the good fight, and not give up until they were granted equal rights. No one told these couples that “it’s just a piece of paper.” So, why does this attitude change for couples like Mark and Me?
In the early days of the fight for gay marriage, the concept of Civil Unions was created, which gave same-sex couples the right to be at a partner’s bedside, privy to their medical information, and other rights of marriage without making it legal. For the most part, the LGBT community refused to accept this. For many that I talked with about this issue, it was the system’s attempt to placate them: “we’ll give you half of what you want, but not your heart’s deep desire.” Given that, even when civil unions were offered, same-sex couples continued fighting for the fundamental right that is legal marriage, and were encouraged to do so. Yet there is not even an option for civil unions for those receiving benefits like SSI, sSDAC, and Medicaid. In fact, we can lose these benefits by simply appearing to be married—no piece of paper necessary. Not only do we not get our heart’s desire, but we must go to the other extreme and make sure we don’t join our lives in any way beyond that of roommates.
People (some of them disabled), have come up with another argument concerning why they think I am wrong about this country still not having marriage equality for all. Their take is that prior to the Supreme Court ruling, a same sex couple simply could not get married, no matter how much they wanted to. It was just not an option. They argue that couples such as Mark and I could go down to the courthouse today, apply for a marriage license, and get married by a Justice of the Peace in record time. These people claim I have no argument, because Mark and I are simply choosing not to marry, rather than being unable to. on the surface that logic would make sense. But what happens to us after that marriage ceremony in the courthouse? Do we go off on a honeymoon and begin our lives as happily married people? No. Letters would begin arriving in the mail, announcing that the Social Security benefits which provide for our basic necessities for daily living have been reduced or cut off altogether. Next we get letters that announce that coverage for Mark’s life-saving cancer treatment has been taken away. What do we do then? We are not the only ones in this situation, and many people who wish to marry face disabilities and health difficulties even more severe than ours. Marriage or cancer treatments…not a real choice. For Couples where one or both partners is even more seriously disabled, this is not a choice, either. Marriage, or life-sustaining medical equipment, skilled in-home care, medical procedures….not a real choice. Marriage or food on your table, shelter over your head…this does not sound like a real choice to me.
My friend Amy likened this issue to the poll tax laws that many states had from the late 1800’s all the way up to 1966. Strictly speaking, blacks, whites, women, and Native Americans all had the right to vote….so long as they paid the required poll tax, and (in some states), passed a required literacy exam that showed they were educated. The makers of these laws knew full well that on the surface they would look like progress. Proponents of the poll taxes and literacy tests claimed the laws were perfectly equitable: after all, everyone did have the right to vote, and everyone wishing to exercise their right was required to pay these taxes, regardless of race or gender. What the lawmakers would not publicly admit was that there were groups who would be disproportionately unable to pay, such as African-Americans, Native Americans, women, and even impoverished white people. The sums of money those states required are literally pocket change to us in 2015, but they were exorbitant amounts of money at that time.
The reality was that the poll taxes and literacy tests were quiet ways to ensure that only select groups would be unable to vote. It could have been said to anyone at that time, “Oh you could go vote, you’re just choosing not to.” Technically, this would have been correct. Yes, a person in a minority group could have gone to their local courthouse and cast their ballot, but were faced with a choice that was not really a choice: use the money they often earned with back-breaking labor to exercise their right to vote, or feed and shelter themselves and their families.
Fast forward to modern day and the Federal marriage penalty laws. There are no laws on the books that explicitly state that people with disabilities or those who are elderly cannot marry. There are no rules that explicitly state that those receiving Social Security and/or Medicaid benefits are not allowed to get married. There would probably be a public backlash if the laws were this blatant. Like the historical poll tax, it is a very insidious form of discrimination that most people are unaware of. Many advocates who are aware view it as a quiet form of ableism and ageism.
They theorize that lawmakers are aware that people receiving benefits from these programs largely fall into the disabled or elderly categories. In the minds of many young and/or able-bodied people, these groups should not be allowed to marry anyway. The theory is that Federal laws penalizing recipients of these programs for marrying are just an easy way to ensure that this does not happen, while not being outwardly discriminatory. While I have yet to make up my mind whether I entirely agree with this, it would not surprise me to find it was the case. Therefore, it baffles and angers me that people continue to claim the US has achieved marriage equality for all, just as it would baffle and anger me if someone claimed the poll tax set-up was voting equality for all.
When Mark and I mention our plight to friends, family, medical professionals, etc. Our pain is minimized, more often than not. We get statements like, “Oh, you don’t really need marriage, you know how you feel about each other.” “It’s a silly paper that doesn’t mean much.” Really? I beg to differ. The gay rights movement didn’t see it this way, and though their fight was long, drawn-out, and in many cases painful, they eventually achieved enough lobbying power to get the laws changed. I can’t help but wonder: where is our lobbying power? Where are the groups that will rise up, go to our Congress people, and try to create awareness and change for the millions of couples who are disabled or elderly? Where are the Hollywood celebrities? The musicians with world-wide fame? The high-profile athletes? Where are all the people who helped fight for same-sex marriage? What no one has appeared to consider is that the Supreme Court decision now bring same-sex couples who receive these benefits under the same discriminatory rules. While awareness of this issue is growing, I’m not sure that the disabled and the elderly communities have enough numbers to push such change forward. Collective action is often most effective, but groups/organizations who recognize this problem and its seriousness are few and far between. Those that do exist are often very small groups without the ability to attract the high-profile audience that is needed to get the attention of those in power.
I’ve known of these laws for years, and they have always disgusted me. Unfortunately I never thought to help advocate for change, because I never envisioned meeting anyone I would want to marry. Now I have, so these laws have become very personal. I wish now that I had fought to advocate for change before this issue became so personal to me, but like so many of us, I failed to act until an issue touched my life directly. However, now that it has, I will continue to work to create an awareness of this discrimination, and do whatever is in my power to see the laws changed. I hope this post will be a step in that direction.

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5 thoughts on “Don’t Be Fooled: Love Hasn’t Won…Yet

  1. in Australia at the moment there has been a lot of lobbying to move a motion to make same sex marriage legal but lately the motion has been defeated and looks like it’s going to go to a plevasite and our prime minister says he will debate it at the next election in countries such as india and the like people in gay and lezbien relationships face life in jail which in my opinion is totally wrong. it’s not up to governments to be telling us what sort of relationship we should be in if a same sex union makes somebody happy we aren’t the ones to judge as I like to say treat others how we want to be treated if people are gay or lezbien it doesn’t mean we should hate them for it off the topic of gay and lezbien relationships now it’s a very precarious situation as far as benefits goes a lot of which is far too complicated for me to put into what I want to say but I’d love to be in a relationship myself but it’s high time I did a lot of thinking as far as payments and stuff goes as far as I know it the disability payments system in the US Canada and other overseas nations are different to here in australia

  2. I’m one of these folks who fall under not seeing much point in marriage in general. That doesn’t by any means equate to I don’t think someone who wants to marry shouldn’t be allowed to, but rather that whether or not I were disabled, whether or not I were receiving disability benefits, and whether or not those benefits would be subject to the same marriage penalty (hint: at least in this part of Canada they are), I’d see it as pointless for me–if I’m with someone long-term, it’s enough that I want to be and that they’re insane enough to put up with me. To me, a piece of paper wouldn’t change that–and would, in fact, only serve the purpose of having the option of claiming that person on my taxes.

    That having been said, I can’t disagree with this post. In fact, it actually gets worse if you think of it. Take a situation where one half of the couple is working. It doesn’t need to be an extravagant job–even, say, earning what accounts for minimum wage at a coffee shop. They’re probably not receiving disability benefits at that point–or, at least, not beyond whatever medical coverage they’re entitled to. So in theory, the government can’t really touch them, right? Wrong. As soon as marriage comes up, if half of that couple’s receiving disability benefits of any kind, the government gets to poke around in the employed person’s finances now. Why? Because if you’re marrying someone and that someone is employed, they’re expected to support you. If they make enough, in the government’s opinion, that it would equate to what you’re getting on disability–or what you’d both be getting on disability if you both were, you get a letter that says congratulations on your marriage, and by the way your spouse makes enough now that you don’t need us. So if you’re one of these people who actually aspires to do something beyond spend your time on disability, finding work is perhaps more of a disinsentive for you to end up marrying someone. Not a pretty thing, given how few of us can manage to find work without taking that into consideration.

    This may or may not also explain why someone who might be significantly able-bodied enough to find any kind of employment in general would be hesitant to marry someone who, for whatever reason, either can’t or hasn’t yet. If you’ve spent your life trying to be as independent as humanly possible, you’re not going to want to have to depend on someone else. You may or may not be comfortable with someone you know is perfectly capable of being independent having to depend on you. The government, for lack of a better way to put it, doesn’t care. If you make $amount, the government decides your husband/wife can depend on you, now. Whether you or they want it or not.

    It’s discriminatory, it’s belittling, and it’s well beyond simply trying to squeeze out a living on a disability income. But even still, you’re absolutely right–it needs to change, and yesterday. Now where do I sign up?

  3. As someone who’s been married before and had this happen to me I can totally agree. That’s one of the biggest reasons I have no plans to marry again, not that I’m currently with anyone. But my ex wife was working and sothey cut my SSI almost in half despite the fact that our two incomes combined would probably still have put us well below the poverty line even if my SSIhad stayed at full.

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