I’m Queer and Disabled – Here’s How Marriage Has Made My Life Harder, Not Easier

Originally published on xoJane and republished here with their permission.

We still disagree as to how we got engaged.

She says I proposed by asking if she wanted to go to pawn shops and look at rings. I argue that after a three-hour drive up into the wilderness of New Hampshire, we laid in a fancy bed in a queer bed and breakfast and she turned to me groggily, saying, “Wanna get married?”

Either way, the answer was yes. We found perfect and affordable (for us) rings at a pawn shop in a little town near our B&B the next day and felt so serendipitous. That was in October 2013.

It didn’t take long for folks to begin offering helpful wedding planning tips. A family friend said (a few months later) that we should just do it already, get married. I pointed out that we had been engaged for as long as we had been dating (at that point) and that maybe we should wait.

Both wanting a strawberry-themed day filled with childish joy and adult commitment, we looked to May of 2015. That gave us lots of time to plan, filter questions from super-excited family and friends, and figure out what we really, really wanted versus what we really, really could afford.

We didn’t know that by waiting until May, 2015 to get married, we would be just under a month until the United States Supreme Court would rule that marriage equality was to be the law of the land.

Having been born in Massachusetts, then an expatriate in Ohio during the Super Defense of Marriage Act vote passage, and returned post-equality of marriage happening at the state level in Massachusetts, I had mixed feelings leading up to my own wedding.

As a young queer activist, I rallied against the conservatives who not only would refuse to allow myself and all my best queer friends to marry who we wanted, but also refuse to recognize a marriage certificate should we go out of state lines to get one. I didn’t really rally for my own marriageability per se, just the principle of the thing.

I didn’t really think it would happen for me, a queer punk kid with career aspirations and a wandering eye. Then I got engaged.

My queer little bubble of Massachusetts General Law c.207 meant that planning our wedding felt easy, legally. I picked Boston (my town of birth), and we saved money for the fees.

Going to Boston City Hall a few weeks before our formal ceremony (at my mother-in-law’s house in Connecticut) meant a fun and tear-filled walk through the halls, staff congratulating us both before and after the sweet legal moment.

The City Clerk laughingly joined in on the struggle between us and our maids of honor over whether we should be “wives” or “spouses” on the certificate (we went with spouses, as I am genderqueer femme). Pictures were taken, tasty dessert was had after. It was a great day.

In Connecticut, it was even better. I say this with all due respect to Boston City Hall and everyone who cheered us on, and the cute outfits we wore.

Our wedding party had labored intensely to decorate, finish up the table favors and put up the Chuppa that my friend Emmy sewed out of scraps of fabric salvaged from my wife’s late grandmother’s pile of projects and scraps of fabric lovingly sent to us by family and friends. My friend Esther helped translate our Ketubah and framed it with the help of Target (the store). Even my (later to be retired) guide dog Drummer took part as the curmudgeonly ring bearer.

With a mix of agnostic/atheist, science, and Jewish tradition, we committed ourselves to each other.

My wife included in the ceremony a moment to reflect upon what it meant to grow up queer and think marriage wouldn’t really be a possibility – only to stand before loved ones and know it meant something in the state we lived in and at least the federal level, since the Federal Defense of Marriage Act was struck down as unconstitutional in 2013.

Lots of tears, lots of gratitude.

Just as the Boston City Clerk told us, there was a lot of paperwork to take care of post-nuptials. I had decided to take my wife’s name, meaning I had the most work to do. Carrying around our marriage certificate, I went to Social Security, the Department of Motor Vehicles, and a few more places in order to change my last name and feel even more officially married.

Because I’m disabled, I also had to make sure that the Social Security Disability Insurance (SSDI) office got my name change and that my benefits would not be impacted.

It all went so smoothly. Even my new state ID and transit system card photos looked decent. Sunshine, lollipops, and a continuance of strawberry-themed joy followed us for several months.

As a low-income family, we both had Medicaid (called MassHealth here) as our health insurance. When we married, our combined income changed things a bit. The Affordable Care Act meant that my wife had to purchase a plan with a tax break, something we couldn’t really afford but would make work.

I, on the other hand, have been spending months (since July 12th, to be exact) making weekly phone calls to MassHealth/Medicaid, the Affordable Care Act website (Health Connector here in MA), and the Managed Care Organization (MCO) that took care of my Medicaid prior to my marriage.

Things got screwed up when we refiled for insurance; there wasn’t a spot on the application to indicate I was disabled and receiving SSDI, so the state thought I fell in to the same boat as my wife.

After four weeks of calls, MassHealth enrollment said that nope, being on SSDI meant that I would always, always be on MassHealth and to cancel my Health Connector plan (which I dubiously signed up for in July) because everything would work out for good.

It’s September. As Kim Davis refuses to marry anyone, let alone queers and gay/lesbian/bisexual folk, the state of Massachusetts continues to get my last name and disability status wrong.

My wife and I got married for love and to build a family – with all the security and commitment that comes with that. The state of Massachusetts married us according to the law and gave us a big ol’ health insurance nightmare as a wedding gift.

And as I complain and cry on Facebook, I find that many disabled folk on SSDI had the same problem or cite that as a reason not to marry. Able-bodied queers rally for clerks in other states or counties to do their jobs.

Disabled queers struggle under the massive crap pile that is getting health insurance caught up with the marriage they had access to. Or they avoid marriage and live “like roommates” with their partner(s) because it’s just too much draining work to get married and keep access to health care, government assistance programs, and even the very monetary benefits that allow them to pay the bills.

I didn’t realize this when I rallied for marriage equality back in 2003. I didn’t realize the intensity of this when I co-filed my intent to marry in May of 2015.

And I’m still crying and shrugging while I continue to see specialists that keep my life worth living (or are trying to figure out how to solve the rubik’s cube that is my health so it is even more worth living) when they ask “What is up with your insurance?”

I hope everything works out. I keep getting told it will work out. But then again, I’m waiting for my second call-back from MassHealth, after Monday’s ended in me talking to dead air and a hang-up.

So can we include disability rights in our continued cultural fight for marriage equality?

I mean, maybe big homo organizations and protestors could look at Social Security reforms and government assistance program policies that make it so difficult for disabled folk to utilize legal marriage rights for queers? That’d be nice.

Author’s update: As of October 5 the Health Connector has admitted it must have its IT department write new code to correct the mistakes made in the system. My wife has been given my social security number in their system, which has halted her personal insurance plan bought two weeks ago to ‘correct’ this for her. I am still in limbo.

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Jeanette Spalding is an assistive technology specialist, parent advocate for children with disabilities, social justice worker and poet. They like glitter, universal design, sewing (poorly) and cruising around like a blind cyborg in C.A.R., the trusty power chair.