I am elated that the Supreme Court ruled today in favor of marriage equality for same-sex and some transgender couples. Poetically, it is a day that is very special to me as it would have been my grandparents’ 72nd anniversary. I have never seen anyone as in love as my grandparents, who celebrated over 60 years together when they were alive. They were the image I grew up with of love, marriage, and commitment. I always dreamed that one day I would be able to get married, and show my love and commitment for my spouse, as well.
As a transgender man who was born in Ohio, one of the only states to refuse to recognize the gender identity of transgender people, I was in a small group of transgender people who were unable to marry in states that did not recognize same-sex marriage, even though I am legally male and my partner of 13 years is female.
Thanks to the Supreme Court that is no longer an issue. While I technically can now get married, without worrying about my transgender status, unfortunately, I still remain unable to marry my girlfriend without facing a massive penalty. This is a penalty I face as a person with a disability.
I have been fighting for marriage equality for people with disabilities for the last few years. I even started an online Facebook community called Marriage Equality for People with Disabilities. I am consistently asked to explain why this is an issue. Many people have no idea that most people with disabilities are unable to marry without facing harsh penalties.
While this does not affect every single person with a disability, it affects the large majority of us living in the United States. Considering there are over 50 million people with documented disabilities in our country, that is quite a few people.
The issue not only affects marriage, it affects our ability to work. When you have a disability and you rely on certain services, you are expected to live in abject poverty if you wish to receive those services. Most of these programs have very low limits in order to receive said benefits. For example, in my home state of New York, if I make over $825 in benefits or income, I have to pay in for my needed health care services. It also creates a lot of red tape, as you are not listed as being on certain healthcare programs until you pay a spenddown each month. When I first moved to New York I was placed on a spenddown, and it made getting the services I needed to live incredibly difficult.
Luckily, New York has a program for workers with disabilities, so as long as you have a job, you can make a certain amount of money, which is much higher than most states. Not every state has this program, and even with it, in most states it is hard to make a living wage, without being penalized or kicked off the program. While these programs allow some people with disabilities to work, getting married becomes a tenuous thing, as your spouse’s income is also included in the mix. If your spouse has a decent job, you are expected to become their dependent, and all of those services you may need go out the window. So, you either need to be making so little money, or you and your partner need to be so incredibly wealthy that you can afford to pay for everything you need.
Lose Services if Married
What kind of services am I talking about? For me, if I were to marry my partner I would lose home healthcare services, which pay for personal care attendants to come into my home and get me out of bed, get me dressed, help me to take a bath, give me my medication, eat, fix my meals, and pretty much any other activity of daily living. Without these services, I would end up stuck in bed.
My partner does not have enough money to pay for these services, even when she had a decent job when we lived in Ohio. Living with a disability is incredibly expensive, especially when companies bilk consumers with disabilities. My wheelchair costs more than a car, which is absolutely ridiculous, but that’s the reality we live in. If my partner were to do all my care, she would be unable to work, and we would not be able to eat, pay our bills, or have a place to live.
Caring for me is not her responsibility nor should it be.
For others, the kind of services they need pay for programs that teach them independence, medications and therapies they need to survive, essential equipment like wheelchairs, and other incredibly important forms of assistance. In most cases, our only option to get the services is through Medicaid, and Medicaid has such stringent requirements for income, if we want these services we have to keep our income nearly nonexistent. As many people with disabilities are having to rely on things like food stamps and SSI to supplement their income because without that money they would not be able to survive.
To Get Married Or Not To Get Married?
The services I listed above are life-and-death services for many of us. Without them, we would not be able to survive. So how does one make the decision between having the ability to get out of bed or go to the bathroom and getting married? What kind of choice is that? It is not a choice, because we need these essential services to survive. We have no choice but to not get married. Because of this penalty we have no ability to get married, and because we have no choice in the matter this is an issue of equality.
I have heard many arguments about how people with disabilities can “technically” get married, but when you remove the choice of an individual, which this penalty has done for so many of us, it becomes clear that the option of choice has been removed from us. This will not change unless we happen to become millionaires, which is highly unlikely and unrealistic. We are fighting to change the rules, because we deserve the right to be married, just like anyone else. We face many of the issues the LGBTQ community faced, while stuck in domestic partnerships, and we will continue to do so until we also can get married, without facing this penalty.
Unmarried Our Partner Becomes A Stranger in the Eyes of Society
My partner has been denied access to my hospital room. As someone with Spinal Muscular Atrophy, a progressive muscle disease, it is often dangerous for me to be at the hospital as nurses and doctors do not understand my disability, and many people have been harmed by inaccurate health practices due to this lack of knowledge. My partner knows how to advocate for me when I am too sick to do it for myself, and she often has to take care of me, to make sure no harm comes to me.
Because we are not technically related, she has been kicked out of my room, even with forms saying she had the right and access to be there. Some of the nurses made an executive decision that she should not be there, and kicked her out, leaving me alone with no one able to take me to the bathroom or feed me lunch. The nurses were too busy, and when the doctor finally overruled them, my girlfriend found that I was starving with cold, hours-old food, and a full bladder that was about to explode. That was just the first time she was denied access to my room. It has happened a few times since then with similar results.
I also have no rights to my son, who would be protected if I were able to marry his mother. I have raised this child, even though I am not his biological parent, but because I cannot get married without losing services, the state sees me as nothing to him. The ability to get married protects families, and people with disabilities do not have that right. I know that some people live with the misconception that those of us with disabilities cannot have relationships, do not desire relationships, or we are incapable of falling in love, but we are just as capable of wanting to get married, having a family, and falling in love.
Financially, some people with disabilities are reliant on SSI or disability benefits, in order to survive. When one gets married, these benefits are often cut or eradicated. Social Security disability benefits for adult children are completely taken away if a person gets married, because it is stated that the individual with a disability becomes the dependent of their spouse. As I mentioned above, spouses are not able to care for their loved ones and maintain jobs, making it impossible to pay bills, and leading to poverty or even homelessness.
If two people with disabilities on SSI get married, their benefits are cut drastically, to the point where they cannot afford to live. I have many friends living in this very situation. Additionally, Social Security can determine whether you are married or not, even if you technically are not in a legal marriage. They can cut benefits and healthcare services, simply by stating they believe you are living in a marriage type situation. Many of us cannot even acknowledge our relationships without the fear of losing benefits or services we have, which adds another layer of complication to an already complicated issue. This is another topic for conversation.
I know some people say that this happens to non-disabled people getting benefits, but the difference is, for those of us with a disability these are life and death services. If a person cannot work due to a disability, they simply have no choice but to receive SSI or disability benefits. With Medicaid being the only insurance offering services like home healthcare, we don’t have any options for paying for health insurance. We still would not be able to get out of bed, so we must rely on Medicaid, and make sure to maintain the proper financial requirements to stay approved for these programs. If I was not disabled, I could get a job and use my health insurance from my job, or I could qualify for the ACA, and because I don’t need home healthcare, those insurance options would work for me. Since I do have a disability, these are not a viable option.
We need to eradicate the penalty because not only will people with disabilities be able to get married, we would be able to have jobs. So many of us are highly educated. When I was helping to form a nonprofit on neuromuscular disabilities, we did a survey of people in the community and we found that people with neuromuscular disabilities were highly educated with at least a bachelor’s degree though many had higher degrees, but most did not make over $20,000 per year. The reason for this was because they had to qualify to receive home healthcare. We want to have jobs and the ability to better contribute to society. We would be able to do this if we did not face such a harsh financial penalty!
This is also an issue facing older Americans, as they depend on services like SSI and Medicaid, or as they develop disabilities that require home healthcare. When people who are married already develop a disability through illness or an accident, they often have no choice but to get a divorce. This is an issue that could affect nearly anyone, at any point in their life, so we need to band together and fight to eradicate this issue now!
I am incredibly happy for all of my LGBTQ friends who are able to get married, but we still have a long way to go until marriage is truly equal for everyone. I hope you all will help support this issue, so that those of us with disabilities have the same access to marriage, and it is truly equal for all.
If you support marriage equality for people with disabilities, please sign the petition!
Editor’s note: I know that getting married has even more penalties than those mentioned above. If it has affected you, let us know in the comment section. What are your thoughts? Continue to scroll down. There’s more!
Dominick Evans is in his early 30s. He is a film director who lives in New York with his long-term partner both creatively and otherwise, Ashtyn, their son, Robert, and the best behaved Shih Tzu in the world, Molly Mae. As an outspoken advocate of disability and LGBTQ rights he has been featured in the New York Times, daily dot, and other publications. He was also invited to the White House in 2014, for the first discussion on LGBT and disability issues.
Dominick pays his bills as a freelance writer and video maker. He is the founder of the popular Twitter chat, #FilmDis, which holds discussions every Saturday night at 9 PM ET. Each discussion revolves around a topic central to disability in the media. He can also be found playing video games, and talking about being a gamer with a disability through his writing and gaming videos.
Also check out his website at: http://www.dominickevans.com/
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