My grandmother lived with schizophrenia. And high blood pressure, diabetes, seizures, and strokes that left her partially paralyzed on her left side. Due to these disabilities, she received Supplemental Security Income (SSI) through my grandfather, from whom she was divorced. She used this income to raise their three girls in a two bedroom and one bath apartment in California. My grandfather did not contribute a dime to the household.
The interesting part of the scenario is this: my grandfather remarried without any financial penalties; but if my grandmother would have remarried, she would have lost her only source of income. This was because of still-existing laws that penalize disabled persons from getting married. Whereas abled-bodied people in the United States often qualify for an array of benefits upon marriage (health care savings, lower car insurance premiums, more social security options), disabled persons often lose life-saving resources.
Many people with disabilities rely on SSI, as well as other public assistance programs like Social Security Disability Insurance (SSDI), Medicare, Medicaid, Section 8, and food stamps, to pay for the high costs of living with a disability. Such programs provide for basic necessities such as rent, groceries, and medical supplies not covered by insurance, but they require a person to live in poverty. If one’s income surpasses a certain threshold, that person may be disqualified from the programs.
And if a benefits recipient decides to get married, then that person’s spouse becomes responsible for all of their expenses (unless this individual also has a disability). This includes not only food, housing, and insurance, but equipment, home health care, uncovered medications, and more. This is a significant burden to place on an able-bodied spouse. In some states, even wedding gifts can be considered a source of income, which means that the calculation of a disabled person’s fitness for public programs begins on Day One. Given these realities, it’s easy to see why disabled persons who would otherwise be excited to get married refrain from doing so.
The disparity in numbers between able-bodied and disabled individuals who get married is striking. According to some reports, the first-marriage rate for individuals between 18 and 49 years of age is 71.8 per 1,000 people. But for individuals with disabilities, that figure drops to nearly half ( 41.1 per 1,000).
In my own case, just having another individual in the same household means that I risk losing income. This is true even if that person does not contribute to the household whatsoever. At one point, my older brother moved in, and, without my knowing, the Social Security Office documented him as paying income. For months, I lost hundreds of dollars in income because it was falsely presumed that he was chipping in. I never recovered this income, even after clarifying the situation for the record.
The Social Security Administration explains that a beneficiary’s income increases only if the new resident helps to pay the bills. But with disabled persons, the administration often takes the liberty of deciding whether or not this is the case. In this way, the office punishes disabled persons who live with a romantic partner.
“I am tired of having to explain to people that I can’t get married because I need free lyft rides to take me to my weekly doctor appointments.”
“So, just don’t get married,” people often say when I express frustration about these issues. But am I not deserving of this social rite of passage? Shouldn’t I be able to marry the person I love without having to worry about losing the benefits I need to survive?
I am tired of having to explain to people that I can’t get married because I need free lyft rides to take me to my weekly health care appointments. Addressing these very issues, disability rights activist Dominick Evans asks: “How do you tell a person to choose between having food to eat and getting married? How do you tell a person to choose between going to the bathroom and getting married? How do you tell a person to choose between their medication or their therapy or their wheelchair or their program that helps them to be more independent and self-sufficient and getting married?”
Evans elsewhere notes that the issue of marriage within the disability community is inextricably linked to the eugenics movement, in which disabled persons were sterilized against their will and prohibited from marrying. Even though states do not openly sterilize individuals or prohibit marriage as they did in the early twentieth century, they dissuade disabled persons from having children by dissuading them from marrying.
I believe that there is opportunity for compromise on the issue of marriage and disability benefits. For instance, the Social Security Administration could at least allow individuals to keep their health insurance upon marriage. This would allow many individuals like myself to pursue a mutually beneficial relationship (marriage) without sacrificing my ability to live.
But neither the Social Security Administration nor other agencies are likely to act on any of their existing policies until we frame the issue as a civil rights issue. This means that public conversations about “marriage equality” must include those living with disabilities. So long as it punishes certain persons while benefiting others, marriage is not available and accessible for all.