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A local couple’s dream to get married has become a national advocacy campaign for inter-abled marriage equity.

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Mark Contreras and Lori Long

Mark Contreras and Lori Long in their Salinas home. The couple only learned after they began planning their wedding that an archaic provision meant Long would lose her Social Security Disability Insurance if they got married—a provision that applies only if a disabled SSDI recipient marries someone who is not disabled.

Any conversation with Lori Long, who has been daydreaming about her wedding for years, inevitably wanders into the logistical and spiritual and design elements of a wedding: Maybe it would be at Tarpy’s Roadhouse, where she and Mark Contreras went on their first date, or maybe at their church, Madonna del Sasso in Salinas. She’s considered flowers, and they long ago picked their rings. But Long and Contreras, who had hoped for a short engagement have instead been engaged for five years and not yet gotten married, because an antiquated, discriminatory provision of Social Security rules stand in their way. 

Long is mostly interested in talking about love and marriage, but the conversation inevitably turns to this years-long bureaucratic nightmare, and to her disability. Long was born with a rare autoimmune disease, hereditary ankylosing spondylitis, which results in tiny fractures to her spine, a painful condition that requires lots of physical therapy and stretching, beginning every morning first thing when she wakes up, just to enable herself to get out of bed. She describes medical care as a full-time job, in addition to her part-time job at Home Goods. She relies on $1,224/month from Social Security Disability Insurance to cover expenses. (Contreras works in accounting.)

Along with some 1.1 million other Americans, Long receives SSDI under a special program for adults whose medical disability started before they were 22. 

But there’s a catch: SSDI recipients, known in bureaucratese as “adult disabled children,” or DACs, can keep those benefits as long as they remain single, or if they get married to another disabled person—but not to an able-bodied person. For Long, and an untold number of others, this has the effect of prohibiting them from getting married to who they love. 

We had our battles legalizing interracial marriage and same-sex marriage (the cultural battles to normalize them continue). Long’s heartbreak at learning she had to choose between critical benefits and fulfilling a lifelong dream motivated her to become something of a scholar on that history—and an activist calling for changes to allow more inter-abled marriages. 

She took her complaint to the staff of her congressman, U.S. Rep. Jimmy Panetta, D-Carmel Valley, and even his staff was shocked to learn about the provision. They wrote to the Social Security Administration to find out if it could possibly be true, and the SSA wrote back: “Unfortunately for Ms. Long, she was given the correct information…[her] benefits will terminate upon the marriage.”

Thus began a years-long campaign by Long, who would rather be working on floral arrangements than on political activism, but she persisted. She got resolutions of support for a law to roll back these outdated Social Security provisions from her state senator, Anna Caballero, D-Salinas, and the Monterey County Board of Supervisors. 

And finally today, Jan. 13, Panetta introduced the Marriage Equality for Disabled Adults Act. “The current law can put people in a position where they are forced to choose between their health care or their happiness,” Panetta says in an email. “That type of marriage penalty is antiquated.”

Long knows she still has a ways to go before it becomes law—there may be hardliners in Congress who don’t want to touch Social Security at all—but today is for her a celebration and an achievement already. 

“We are encouraged that by sharing our journey, and our love, the lives of others will be positively impacted by the important bill Congressman Panetta has authored,” Long writes in a statement. “It’s wonderful that the proposed bill will help survivors of childhood disability across the country achieve marriage equality."

A few years ago, Contreras got Long a wedding band in addition to her engagement ring. “Mark said, ‘You are my wife,’ Long says. “I wear the band on the outside of the engagement ring, and when we actually take our vows, I will move it to the proper spot.”

To Lori and Mark: Here’s to hoping that happens soon. And congratulations on getting this far.

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Sara Rubin loves long public meetings, red pens and reading (on newsprint). She has been editor of the Monterey County Weekly since 2016, and has been on staff since 2010.

You make our work happen.

The article you’re about to read is from our reporters doing their important work — investigating, researching, and writing their stories.

We want to provide informative and inspirational stories that connect you to the people, issues and opportunities within our community.

Journalism takes a lot of resources. Today, our business model has been interrupted by the pandemic; the vast majority of our advertisers’ businesses have been impacted. That’s why the Weekly is now turning to you for financial support. Learn more about our new Insider’s program here.

Thank you.

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