UPDATE: The article that I mention I wrote for the Saint Louis University Journal of Health Law & Policy can now be found here.

I know, I know, it’s been forever. I didn’t intend to take such a long break from blogging, but last semester really kicked my butt work-wise and I could not dedicate the time I wanted to writing posts that would be worth reading. By the end of most days, my mind was completely blank or I was so stressed I couldn’t function. But now it’s over! And better yet, I only have one semester left before I graduate!

Good things happened this last semester, too. I learned a lot about myself and about the topics that I studied. We had a weirdly drawn-out election with an ultimately good outcome, so that was interesting. I now hold positions on both the DREAM Student Advisory Board and the Board of Directors for Paraquad. And, ^{drumroll please…}

I got engaged!

Juan, my boyfriend of six years, proposed to me just a few minutes after midnight on New Year’s Day. It was very sweet and very intimate and I am very happy. However, as with anything in my life, this happiness is tempered by a reminder of my disability, and the lack of justice in the system I have to live in. Usually when I tell people about the engagement, the first or second question out of their mouth is “So did you set a date!?” It’s a totally normal, expected question, but instead of saying “we don’t know yet” or “it’s next year,” or whatever, I have to watch the person’s face fall and hear their voice noticeably lower and lose excitement when I explain.

Juan and I can’t set a date for our wedding because if we get married, or if the government determines that we are holding out as married, I will lose the Medicaid benefits that keep me alive. So until those laws change, or until one of us wins the lottery or starts making half a million dollars a year, there won’t be a wedding.

I have done the math and exclusively considering only my aides and nurses, we would need to be able to dedicate between $100,000 and $200,000 a year to pay people to come in and help me when Juan can’t. That is not even for 24-hour care and it is not the most that I should probably pay; it is only a semi-competitive wage for a year’s worth of care. If anyone has a spare $100,000-200,000 and is willing to pledge that annual donation for the rest of my life (and keep up with inflation) I don’t believe there is any way I could ever repay it.

And that figure also does not include the significant amounts of medical supplies and equipment that I need (and I mean NEED). I haven’t even done the math with that stuff since many medical suppliers charge both Medicaid and private insurance companies a different (and much lower) amount than they charge individuals paying in cash. By law, the lowest price must be given to Medicaid, and medical supply companies have deals with most insurance companies for reasonable pricing. It would not be so with an individual paying for their own supplies. They would have no reason not to price gouge and I would have no leverage to negotiate.

So why does this system exist this way and how does marriage interact with it?

For this, I have to explain a little bit of history. The Medicaid program was initially designed to meet the unique health care needs of the aged, blind, and disabled, three populations that were traditionally excluded from the employment-based insurance market. Medicaid is also the only government program that pays for long-term nursing care and is the only type of insurance, public or private, that pays for home health aides.

Medicaid eligibility for people with disabilities is often tied to their eligibility for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) . I am on SSI, which has a strict asset limit of $2,000 for individuals. These amounts have not been updated since 1989 and do not adjust for inflation. This means that if I have more than $2,000 worth of stuff, I am no longer eligible for SSI or Medicaid. Although you are allowed to have a home and a car that is excluded from this calculation, the car must be worth less than $4,500 and, considering the maximum federal amount of SSI is $794 per month, there is no way I will ever be able to buy a house. There is also a strict income limit that is far below the poverty line. Once I surpass that threshold, I will also become ineligible for SSI and Medicaid.

So, how does marriage interact with this? Well, Juan’s income and assets would be combined with mine and all of these factors would be calculated into my eligibility. So if his salary is above the federal poverty line (it is) or if our combined income adds up to more than 83% of the federal poverty line (it would), I would no longer qualify. If our combined assets add up to more than $3,000 (they would), I would no longer qualify. If we share more than one vehicle (he has three), I would no longer qualify. If either one of us have a life insurance policy worth more than $1,500 (he does), I would no longer qualify.

Another wrench gets thrown into this system by the “holding out” provision in the Social Security policy. Basically, if a couple “presents” as married—even if there is no legal marriage—and a Social Security Administration employee believes that they’re trying to cheat the system to keep benefits, they will be treated as married and benefits will be cut. In this determination, the employee can look at name changes, how mail is addressed, whether both people wear wedding rings, whether there was an unofficial ceremony, and, my personal favorite, whether neighbors and friends refer to them as—or believe they are—husband and wife. My benefits are so precarious that they can be taken away by something as simple as a misinformed neighbor, incorrectly addressed mail, or an SSA employee who makes a bad judgment call.

Basically, the gist of all of this is that unless Juan throws away his job and we both choose to live in abject poverty together, getting married would take away the Medicaid benefits that keep me alive. So the choice for me is literally life or death. That’s not a choice. And the real kicker is that this is only for my benefits. His eligibility for insurance benefits through his employer doesn’t ask anything about me, but my benefits would be contingent upon him. He would receive no benefit from sacrificing everything he would need to sacrifice. How could I live with myself for putting such a heavy burden on the person I love?

These laws were written at a time when people with disabilities were not expected to marry and before it was common for us to even live in the community. And, importantly, they were written when healthcare costs were a lot less. At that time, it was more reasonable, at least to the government, to believe that marriage of and between disabled people was not very common and that someone besides the government could absorb necessary healthcare costs. Since then, the world has changed. We, as a culture, have changed. The assertion that marriage is a fundamental right, most prominently established when laws against interracial marriage were abolished in Loving v. Virginia, was strengthened by the abolition of laws against same sex marriage in Obergefell v. Hodges. Justice Kennedy, in his opinion for Obergefell, stated:

Marriage is sacred to those who live by their religions and offers unique fulfillment to those who find meaning in the secular realm. Its dynamic allows two people to find a life that could not be found alone, for a marriage becomes greater than just the two persons. Rising from the most basic human needs, marriage is essential to our most profound hopes and aspirations.

These laws aren’t doing what they were designed to do. They aren’t discouraging fraud or only giving health care to people who need it. They are just preventing me from getting married. I’m going to be just as disabled the day after my wedding as the day before, so I won’t need health care any less. And there’s no way to realistically “save up” for all of my health care costs for the rest of my life before getting married. In the words of one disabled writer, “SSI and Medicaid rules are set up to make marriage and having necessary healthcare benefits incompatible.”

I have my own ideas about why these laws have not been updated. Living in this predicament feels so familiar to me at this point. Many disability-related laws suffer from “benign neglect” or the tendency for lawmakers to “forget” to update laws because we are not a legislative priority for them. Raul Grijalva, a representative from Arizona, has proposed a law that would abolish all spousal income and asset considerations during every congressional session since 2013, and the bill has never gone past the first or second committee.

Another problem that seems to reoccur in the disability rights movement is the tendency for our issues to be (rightfully) triaged. Since many government and political decisions have life-or-death implications for people in the disability community, the marriage issue simply isn’t a priority for advocacy. We are an overtaxed community whose advocacy efforts are seldom recognized in the political sphere and many of us are simply too tired, too scared, and too cynical to believe that we have the true power to make changes.

I wrote a soon-to-be published legal article on this topic, marriage and disability (UPDATE: Now available here), and I searched for dozens if not hundreds of hours to find cases where people sued for a restoration of their benefits after getting married. I could not find any in the last fifty or so years. When discussing this with my mentor, I came to the realization that the stakes would simply be too high for most of us to participate in any kind of judicial activism in this way. It is too much to ask of anyone to get married in the hopes that, if they win a long, drawn-out case, they will get to keep the benefits they need. It could require someone to risk their life. And I don’t have the mental, emotional, or physical energy to rock the boat unless I have to.

So here we sit. At our stopping point for now. I couldn’t be happier to be engaged, but I can’t help but feel a little left behind. My future is totally out of my hands and I am tired of seeing the look of disappointment in the faces of my friends and family when I tell them why I haven’t set a date from my wedding. But I know I’m supremely lucky to be with someone who is on my team no matter what and who has chosen to spend his life with me, despite all this drama. Finding love was not something I ever thought I would be lucky enough to do. There are times in my life where I have felt so excluded from this realm that I wanted to scream into the void until I had no voice left. But I guess the universe had other plans for me. And I am so very grateful.

I want to close out with another quote by Justice Kennedy from the Obergefell opinion that I felt was especially illustrative of my thoughts on this issue.

Marriage responds to the universal fear that a lonely person might call out only to find no one there. It offers the hope of companionship and understanding and assurance that while both still live there will be someone to care for the other.

If you want to help with this issue, the only advice I have is to reach out to political leaders in your area. There is no clear-cut path that I have found, but if you have any ideas, please leave them in the comments below!