In this installment of Kate Across America, Kate speaks with Lori Long of California. Lori has been disabled since childhood. The Social Security Administration is penalizing her for marrying her non-disabled fiance. That’s marriage discrimination and it sounds absurd because it is. Here’s Kate with the story….
When Lori met Mark, she remembered her hesitancy about whether or not he would accept her disability, hereditary ankylosing spondylitis, a rare, autoimmune disease.
A year later, in 2016, not only would Mark accept and love Lori regardless of her diagnosis, he would ask for her hand in marriage. “The sparks flew and we had about half a dozen dates in the first two weeks of meeting… and we really have never been apart since.”
An Unforseen Obstacle
Over the moon with joy, Lori rushed towards wedding planning, telling her friends and family about what was in store for this next chapter in their lives. One thing she did not plan for, was being told that by marrying Mark, Lori would lose her necessary disability benefits.
Lori contacted her local Social Security Administrtion office to ask about what would happen when Lori and Mark tied the knot. How would her Social Security Disability Insurance (SSDI) be effected?
In a truly heartbreaking change of events, Lori was seemingly laughed out of the office. They said if she were to marry Mark, an able-bodied man, the benefits and insurance coverage that had protected her throughout her entire life would disappear.
Disabled Since Childhood
When Lori was a child, her parent’s work-record noted that Lori was disabled. “If you’re on your own work record as an adult, if you become disabled, you can marry whomever you want. But if you are disabled as a child, and therefore on a parent’s work record, you lose everything from SSDI upon marriage to a healthy person.”
A single word in her parent’s work record is now why Lori is faced with this terrible choice. Marry Mark and lose her access to Medicare via SSDI, or reject his marriage proposal and keep her disability benefits.
Lori and Mark have set out to create a third option for themselves – to change the law entirely, and to protect people with childhood disabilities, like Lori, from this marriage discrimination.
Advocating for Marriage Equality
Lori never thought that her civil rights would be violated in such a profound and ableist way. People with disabilities are still being left behind, even as the courts have made progress on marriage equality for other groups. “It’s my constitutional right to marry. The man I love, who has asked for my hand in marriage, his right are also being infringed upon. Social Security has gotten away with this kind of discrimination for far too long.”
After reaching out to her US Representative, Jimmy Panetta, Lori and Mark went public with their story. Since then, they have been building a coalition of support around “Lori’s Law.” Rep. Panetta and his staff were shocked, but once her story was verified, immediately vowed to help. They have pushed more awareness forward in an effort for the SSA to change their policy.
Some Progress Is Not Enough
While rights have advanced since the founding of 1990’s Americans with Disabilities Act, there’s a long way to go. Marriage discrimination still occurs, like what Lori and Mark have endured. In this case, they have put their foot down and are now obtaining signatures for legislative action, boosting social media campaigns, and working with legal advisors to correct the discriminatory practices of the SSA.
Kate Pecora is a graduate of the University of Massachusetts Amherst where she studied Healthcare Policy and Political Science. She is an advocate for rare diseases, primarily in the neuromuscular space. Kate has Spinal Muscular Atrophy Type III. She is currently (e)traveling across the country in search of the most compelling stories of patient access, affordability, and quality. Ultimately this will become a book that will educate students on the importance of patient perspective. Instagram Facebook Twitter