Beth and Frank are deeply in love. They have been in a committed, exclusive relationship for nearly 20 years. They have a wide circle of friends and a wide variety of shared interests. They take pride in each other, encourage and support each other. Their extended families are connected. Their’s is a deep, complex, nuanced, long-term relationship that gives them both great satisfaction. Beth told me once that her greatest dream for her life is that someday, she and Frank can get married. But they can’t get married, nor can they live together outside of wedlock. Beth and Frank aren’t real but their story is true for dozens of couples I know. When the Supreme Court made its historic ruling on same-sex marriage, I celebrated. But then I remembered all those couples I know who are still denied the opportunity to marry and decided the battle for marriage equality is not over yet. And it won’t be over until all the Beths and Franks that I know – and the millions of Americans like them – are afforded the same chance to marry that you and I are. The reason they can’t get married has nothing to do with love or religion or morality and everything to do with money.
Their relationships face the same derision and marginalization that same-sex unions have been subjected to for so long. Then, these relationships are further devalued and disrespected because should these couples decide to marry, they could be subjected to substantial financial penalties on the government benefits they receive – benefits they rely on to live as independently as possible.
As one woman said to me, “No one will let us get married because we’re special.” I’ve done some research to find out why the marriage penalty for people with disabilities even exists in the first place and, on paper, it makes sense: two married people who live together can save money on shared living expenses – rent, utilities, groceries; if those two people also happen to receive government benefits, then those benefits could be reduced because of the savings. In the case of people with intellectual or physical disabilities, each person could receive a 25% reduction in their benefits if they married. If they chose to live together outside of marriage, as soon as their living status was reported, their benefits would be cut.
We say that we want people with special needs to live as independently as possible, that we want to educate them in a “free and appropriate environment (FAPE)” and that we want them to live in the “least restrictive environment (LRE)” and yet we hamstring them at every turn. If they have jobs, they are restricted from earning more than a pittance or their benefits are jeopardized. If their families place money in their names to insure for their long-term care, their benefits can be reduced (unless the family has entrusted this task to a team of highly-skilled attorneys and accountants who set up a Special Needs Trust). If they live in a co-ed group home, they are forbidden from having relationships with the opposite sex out of fear that love might bloom, risking the benefits that pay for their housing.
Raising a child is an expensive proposition. Raising a child with special needs is exorbitantly expensive, even for families with deep pockets and the best insurance. Families rely on the assistance of a complex chain of entitlements and benefits that make it possible for their children to have the therapies, services and assistance they need to live full and rewarding lives. Explaining those benefits goes beyond the scope of this post – partly because I can’t begin to interpret them all and partly because they are so intertwined and include SSI, SSDI, Medicaid, Medicare, Welfare, Section 8, food stamps and others.
People with disabilities rely on some or all of these benefits but in order to retain them, we expect them to basically live in a state of poverty and restrict the amount of money they can earn, save or have in their name. This article from The Huffington Post includes resources and links, along with a simplified explanation of the benefits most at risk for the majority of people with disabilities, should they marry.
My purpose here is to raise awareness of the issue and to ask this question: Should people with special needs be allowed to marry, without any financial penalty?
Justice Kennedy, in writing the opinion for the majority, said of marriage that, “Its dynamic allows two people to find a life that could not be found alone, for a marriage becomes greater than just the two persons. Rising from the most basic human needs, marriage is essential to our most profound hopes and aspirations.” Justice Kennedy also wrote, “Marriage responds to the universal fear that a lonely person might call out only to find no one there. It offers the hope of companionship and understanding and assurance that while both still live there will be someone to care for the other.” I believe that everyone who wants to be married should be afforded the right to fill that basic human need, to assuage the loneliness of living alone and to have the companionship of a partner, regardless of their IQ or physical limitations.
Granted, adults with special needs who want to get married may require additional support systems to insure their success. Most of the families that I know would be more than happy to provide those support systems to their loved ones…they just can’t afford to take the financial risk.
People may question how two people with special needs could actually live independently, in a state of marriage. A documentary, Monica and David, paints a lovely and realistic picture of marriage for two adults with Down syndrome. This touching film won numerous awards and I highly recommend it for anyone interested in the topic (it can be found here on Netflix).
More information can be found on the Marriage Equality for People With Disabilities Facebook page. A petition is available on change.org to end the penalty that prevents people with disabilities from getting married. I signed it and I hope you will consider signing it too.
Society can debate about government subsidies and programs, healthcare expenses, the feasibility of people with special needs living independently and other details in abstract all day long. I can’t think of these things in the abstract because when I think of them, my mind immediately goes to all of the Beths and Franks that I know.
I think of adults who love each other and long to share their lives together in a legally recognized union.
I think of adults who deserve the dignity and respect that marriage would bring to their relationships.
I think of adults who deserve to have lives like the rest of us because the only difference between “them” and “us” is a few IQ points…or the way we move around…or the way we communicate.
“They” are not people with disabilities…they are people, who experience the full range of human emotions that we all share.
“Their” love is no less than our love.