I feel a sense of pride as I see the amount of articles that have been written about marriage equality for people with disabilities in the last few days. The SCOTUS ruling that legalized marriage for those in the LGBT community has brought the issue of whether people with disabilities deserve the right to marry without being penalized bubbling to the surface. Seeing another oppressed minority group being allowed to marry has invigorated our community!

For me, the issue has been close to my heart for the last three years. It was back then when I created a Facebook page to try to explain to people why I could not marry my partner of over a decade. The page, Marriage Equality for People with Disabilities had grown to over 2000 likes by the June 26 marriage equality ruling. In the last five days, over 1200 people have liked the page, and articles like the ones I have been writing for the last few years started sprouting up on websites like Huffington Post and The Advocate.

What has changed in a little over a week? I took a chance to revive a movement I have been trying to keep going, not having any idea whether people would notice. All it took was a post on my Facebook explaining how I was happy that my LGBT friends and family could now legally get married. I just hoped that one day I could join them. This prompted many of my friends to begin asking questions, so I started responding on the Marriage Equality page, and sharing it on my personal Facebook account, as well. With the support came a lot of criticism, especially with people in the disability community, and feeling compelled to answer the criticism, I wrote a blog post that seemingly went viral, answering the critics.

Unfortunately, the issue of why people with disabilities are sometimes penalized if they get married is a complex one. It does not affect every person with a disability, so those that are not affected were either confused or angry. I received many emails calling me a liar, as they themselves had the chance to marry. The penalty can affect people with a wide variety of disabilities, but because it does not affect every person with a disability, and because the laws that have been passed against people with disabilities who wish to get married or have sexual relationships are not always enforced, most people make a lot of assumptions about what this movement is about. I am here to try and clarify these things.

The issue of marriage equality for the disability community is not a new one. It is heavily intertwined with the movement towards eugenics, where people with disabilities were not only sterilized against their will, but also prohibited from marrying. In Connecticut, Pennsylvania, Ohio, Kansas, Minnesota, and Michigan, people with intellectual disabilities, mental disabilities, and epilepsy were prevented from marrying due to a series of laws that were passed in the early 20th century. Other states used legislation prohibiting anyone they considered to have a “genetic defect” from marrying. To this day, while in some instances the law is unenforced, most of these laws have never been repealed.

Removing the laws from the books has been argued against, because some members of the government seem to believe that it is protecting people with disabilities who they deem as, “unable to make their own decisions.” The people affected usually have intellectual disabilities, severe physical disabilities, or they lack the ability to communicate in a ‘typical’ way such as through vocalization. However, these laws are just the tip of the iceberg, when it comes to the government’s interference in deciding whether people with disabilities are able to marry or not.

For many of us, this goes beyond the law, as our right to marry is contingent on a system of classism, which already seeks to keep many people with disabilities living in poverty. Our community faces an unemployment rate of over 80%, and while some of that is heavily embedded in workplace discrimination, a large part of it has to do with the idea that people with disabilities must rely on the government for their most basic of needs.

Living with a disability is incredibly expensive, for many of us. This is why so many people with disabilities rely on programs such as SSI, SSDI, Medicare, Medicaid, Section 8, Welfare, and food stamps. Those of us who qualify for these services are often caught in a catch-22. To pay the exorbitant cost of living with a disability, we need the programs that help us to pay the additional expenses. However, to remain on these programs we essentially have to remain living in poverty. For many, removing ourselves from these programs is a matter of life and death. For example, in my case, if I were to make too much money, I would lose my Medicaid, which pays for one of the most important programs, which keeps me alive: the home healthcare program.

I cannot live without home healthcare. When I have personal care attendants coming into my home to help me do my daily tasks like getting out of bed, brushing my teeth, and taking my medication, I am also able to have a job, pay bills, and contribute to society in many other ways. Other people rely on their benefits, such as SSI and SSDI, because they either cannot work, or they need that extra income to supplement the fact that they have a disability, which comes with additional expenses. These programs ensure that people with disabilities can maintain their basic needs such as eating, paying for their rent, and even purchasing additional medical supplies not covered by insurance.

When a person with a disability gets married, the government expects them to become the responsibility of their partner. The SSDI program is specifically for the adult children of people with a significant work history who have paid into the system. Usually, DAC (the Disabled Adult Children program) is awarded when a parent dies or retires. The entire program is embedded in the idea that the adult child is the burden of their parents. If the person were to marry, they are automatically kicked off the program because they are then expected to become the burden of their partner, unless they themselves also have a disability. In some instances, if both members of a couple are on DAC, both individuals may keep their benefits.

For those with non-disabled partners, the rules of such a program unfairly put pressure on said partner to not only care for their disabled spouse physically, but also monetarily. I know I have already said that having a disability is not cheap. However, unless a partner is quite wealthy there is just no way that they would be able to support their disabled partner if the services they were receiving were paying for the many expensive things people with disabilities require…things like equipment, home health care, and even medication.

When people with disabilities have to choose between their basic necessities and marriage, it is a no-brainer. We have no choice but to choose to live and to function, which means being unable to marry the people we love. This also unwittingly lends credence to the misconception that people with disabilities do not have relationships, are not sexual beings, and do not have the same desires for love or a family that non-disabled people are able to freely express. This is emphasized by the fact that Social Security can make the determination that a couple is living as if they are married, and cut services like SSI and SSDI, whether there is a legal marriage or not. It can be incredibly dangerous for couples to live together when at least one person has a disability, and that person receives benefits, for this very reason.

Many arguments have been made stating that everyone loses access to programs like SSI, Food Stamps, and section 8 if they get married. With those arguments comes the idea that those of us with disabilities are just looking for a handout. Most people experience disability at some point in their lives. When those that become disabled later in life, or those who are older Americans and have similar needs to those who have disabilities, have to consider getting divorced simply to get needed healthcare and financial services, there is a problem with this system. Imagining if some of the newly married LGBT couples had to get divorced in a few years for this very reason, places this entire issue into perspective. What a cruel twist of fate that would be, after waiting to get married for so long. Yet, this is an entirely realistic outcome for those who develop illnesses or injuries.

People with disabilities need access to services. The exorbitant cost of living with a disability makes it impossible to turn those services down. All of the services I mentioned previously, SSI, Medicaid, SSDI/Medicare, Section 8, Food Stamps, and welfare are impacted, and typically lost, if the person on these programs gets married. That needs to change. Not every person with a disability can have a job, but when we can, we need to be able to make a living wage, as well as have the ability to get married while keeping our healthcare services.

Marriage offers many benefits that are not available to single individuals. One of the most important, having your partner with you at the hospital, has been denied to people with disabilities, including myself, even when a partner has power of attorney, there is a living will, or even with other papers attempting to denote the relationship status. Marriage universally protects couples and families, and we deserve the right to have those protections.

A movement is swelling in the disability community. People are becoming aware of the issue. I have set out to start planning rallies, protests, meetings with our legislators, and other events, so we can move our activism to the next level. While this is just a splash into all of the issues that surround marriage equality for people with disabilities, the important thing to know is that those of us living with disabilities deserve the choice to get married, just like anyone else. No penalty should take that choice away. Until this changes, I, and now many others, are prepared to fight.