I was an advocate and patient ally before I came to Patients Rising back in 2017. Since then, my eyes have truly been opened. There are many policies that work against patients in America, from surprise billing to step therapy to medical gaslighting. But the one that shocked me the most – marriage inequality for people with disablities.

YOU ARE NOT FREE TO MARRY WHOM YOU CHOOSE

Lori’s Story

I was diagnosed with a form of Ankylosing Spondylitis as I child. I lived through that disability, burned through a “Lifetime health insurance policy” by the age of 17, and used up a trust meant for college.

I have made the best life for myself I possibly could. I’m active in my community and my church. Though obstacles have been many, hope and love have overpowered them, especially after Mark came into my life.

The Adult Disabled Since Childhood Clause

Mark and I dated, and in time, he asked me to marry him. I said YES! But I wasn’t aware that the Social Security Administration (SSA) could restrict whom I could marry. You read that right. Current SSA policy states, “If he or she receives benefits as an adult disabled-since childhood, the benefits generally end if he or she gets married. However, some marriages (for example, to another adult disabled child) are considered protected.”

As an adult who had survived childhood disability, I was only allowed to marry another adult who had survived childhood disability if I wish to keep my healthcare and disability insurance.

This policy amounts to marriage discrimination. It strips away Social Security Disability Insurance (SSDI) including lifesaving healthcare because as a childhood disability survivor I didn’t choose to marry someone who is also disabled.

“Lori’s Law” was born out of necessity. When life presents you with something that cuts you to the core, not-doing something about it feels more unbearable than accepting it.

Some History

This policy is not consistent with the U.S. Constitution’s Equal Protection Laws which states that ‘whenever government imposes obligations or dispenses benefits, it may not “deny to any person within its jurisdiction the equal protection of the laws.” That provision is explicit in the 14^th Amendment to the U.S. Constitution, applicable to the states, and implicit in the 5^th Amendment, applicable to the federal gov’t.’ – Cato.org

It has been 60+ years since the SSA made an “exception” allowing childhood disability survivors to keep SSDI when they marry – but only if we marry another disabled person. They have gotten away with claiming we become a dependent on our spouse as a defense, yet continue to allow anyone disabled as an adult to keep their SSDI upon marriage to whom they choose.

Congressman Jimmy Panetta

When I went to my Congressman, Jimmy Panetta, for help, he and his staff were pretty sure I was mistaken. After all, marriage to my not-disabled fiancé resulting in my loss of SSDI sounds ludicrous. However, the official Congressional Inquiry Panetta did on our behalf proved we were unfortunately correct.

I am a survivor of childhood disability with the right to love. I should also have the right to marry who I love without risking my life or the quality of it. Life, Liberty, and the pursuit of happiness should belong to all of us.

Clarification: This rule doesn’t apply to someone who becomes disabled as an adult. SSA’s policies discriminates against people with “developmental” disabilities over those who “acquired” disabilities later in life.

Taylor’s Story

I’ve been with my husband for eight years. We were married in 2015 and this September is our 5^th anniversary. I’m so thankful and blessed to have such a great caring guy! I love being married to him, my partner. But when we got married, we were hit with a bombshell.

I am disabled. I live with gastroparesis, chronic migraine, and Craniocervical Instability. Before we were married I had a set amount of money I would receive from Social Security Disability Insurance (SSDI). It helped me greatly. I was able to help with our shared rent for our home, bills, plus my never-ending medical costs. It was a tight budget, but we made it work well.

When we got married a new restriction was put on me – suddenly my husband’s income became my income in the eyes of SSDI. It obviously threw a huge wrench into what was already a carefully structured budget. What was once doable became chaos.

The Twisted Way This Works

I have to report, each month, how much money my husband makes. This changes constantly – he is a sous chef and his income fluctuates. It’s been much worse during the Coronavirus what with restaurants closed. He had to pick up extra work where he could.

How much he makes changes how much I get from SSDI, and due to the way Social Security has this all set up, everything is one month behind. It sets us up for failure non-stop. I can be overpaid or underpaid all depending on how much he brought in the month before. It’s incredibly complicated and difficult to manage especially with my chronic illnesses – I am in a constant state of stress.

Being Treated Like a Burden on Society

Being disabled sometimes comes with a fear that we are “less than”, and a burden. It’s an awful feeling. I have to remind myself, that living with chronic, limiting medical conditions does not mean we are burdens. Of course we are not! We bring plenty to the table in so many ways.

So, what happens when there’s clear marriage inequality, marriage discrimination, within the disabled community? What message is that sending out that we can lose our benefits or take huge benefit cuts all because we dared to marry? I don’t understand this strange rule, why it exists. Why is my worth subject to my spouse’s ability to make money, especially during a period of economic instability like this? It only exists to further limit us. It needs to change.

Carolanne’s Story

June 26, 2015 was an incredibly important day in American history. It was the day the Supreme Court legalized love. Millions of people, young and old, celebrated! They believed that marriage equality was finally achieved. Unfortunately, they were wrong – marriage inequality still very much exists.

Marriage still remains an unobtainable goal for many couples across the country because of the laws surrounding Social Security Income, otherwise known to most people as “disability income”. There are strict thresholds of how much a person on disability can make per month and spousal income counts towards the disabled individual’s income.

The Impact

Therefore, if you are too sick or disabled in a way where you are unable to work at all, but your spouse makes a living wage, their paycheck will count as yours. Essentially this makes you ineligible for Supplemental Security Income (SSI) and Medicare coverage. This puts many couples like me in between a rock and a hard place.

They must choose: get married and lose financial security and healthcare coverage or remain single in order to survive. Until the laws regarding SSI are addressed, America will never know true marriage equality. And what a terrible thing it is that in the year 2020, there is still such disregard for disabled folks.

“The freedom to marry has long been recognized as one of the vital personal rights essential to the orderly pursuit of happiness by free men. Marriage is one of the basic civil rights of man…” – Chief Justice, Earl Warren (1967)

“Ensuring people with intellectual or developmental disabilities have every chance to choose their path in life, especially when it comes to forming their own families, is a fundamental right.” Congressman Bill Keating (2019)

You Are Not Free to Marry

YOU ARE NOT FREE TO MARRY WHOM YOU CHOOSE

Lori’s Story