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.
You can follow Dominick on Twitter through @dominickevans and get in touch by liking his Facebook page.
Also check out his website at: http://www.dominickevans.com/
This article was brought to you by Suze Orman. Thank you, Suze! For those who ask, YES! That Suze Orman!
Editor’s Note: Article was first published June 28, 2015
Be in the know and sign up for the newsletter. The best of the best is in there along with giveaways and competitions. Sign up for the newsletter.
If you’d like to be one of our generous donors just like Suze, check out our donate page.
CHECK THIS ARTICLE OUT! https://www.audacitymagazine.com/wheelchair-bound-only-in-playing-50-shades-of-grey/
Dealing with an addiction? Find out Erin’s experience.
Thank you for writing this article! My husband and I had to wait to get married as his SSI was canceled the moment we said “I do”. This was actually very difficult to read as I know how this all feels, but thankfully we were able to make it work. I know many can’t and it breaks my heart. It has been a struggle over the years, but every time a state worker tells me to divorce my husband, I tell them I didn’t marry him for his money. I truly love him. I wish you the best!
this is a great article and gives so much insight on how unfair the system is.
Dominick- Thanks for bringing up the issue on how being “Disabled” is tied into transgendered couples and limits the success of a legal marriage. Although not transgender myself, I am disabled, but think that there should be some sort of. “Health plan.” If you meet certain requirements, you (significant other) is ALREADY on SSI and/or Medicaid for DISABILITY you should be able to buy-in into a health care plan based on your combined income that would allow you to continue to receive the life-saving daily care you need. I’m sure this is wishful thinking, but if under “Obama Care” health care is mandatory and is a major concern in the United States, times are changing now with the legalization of same sex marriages. This needs to be further expanded to include those with disabilities!!!! It may take time, but we need to start to advocate for something. I hope I’m not far off. I wish you luck and miss seeing you at Wright State 🙂
You should make the proper business decision, you have been together this long does it really matter?
It does when I am unable to see her when I’m in the hospital or give my son security. There are over 1000 benefits married couples receive that are denied to us by not being able to get married. We deserve access to those benefits.
I think that would be a great place to start… giving us healthcare options is important. If we had more options it wouldn’t matter if we did not qualify for Medicaid, because there will be other opportunities for things like care. However Medicaid isn’t the only thing that’s affected. Social Security disability, SSI, Section 8, etc. are all affected. If a person cannot work because of their disability, I don’t think they should be penalized by not being able to marry. Thank you so much for replying! I miss seeing you, too!
My partner is on SSDI and I am on SSI. We have not made our relationship legal for these very reasons. We need the services she receives as she is a partial parapalegic due to someone texting and driving. I actually called SSA to find out how getting married would affect our benefits, and was told that as long as our income was under $3000 a month, we would not lose benefits. However, reading this has me questioning the truth of what i was told. I guess i will need to do more research on this matter, as we want to make it legal. I think it is so very wrong that people with disabilities have to look at things like this before doing something that is so natural for non disabled people.
My partner & I are in the same boat. We’ve been together for 13 years now & together we have an almost 12 year old daughter. My partner is disabled & on SSI & I am currently a student , so there is very little money on which our family survives. My partner also qualifies for services which are all means tested..so if we were married any money which I had …he would lose everything. It’s a huge burden to try & think out future health issues & needs..especially since his health is in decline. We think maybe once I graduate & have a decent paying job…then “maybe”we can get married. We have our Advanced Directives written out & we are each other’s health care rep…& this has been very helpful for us in regards to the healthcare system. The system in general is set up very unfairly for disabled people who want to be married. & I believe the worst thing is that the general population hasn’t a clue of the unfairness.
What is your husband’s disability?
I think the worst thing is that the general population doesn’t care. There’s a petition in the article and we don’t have the 20,000 signatures needed yet over 20,000 people have seen this article.
We are at the bottom of every person’s list.
The marriage penalty has effectively destroyed the family unit for impoverished families. Will you let it destroy the relationships of people with disabilities???
Noah has inclusion body myositis…he was diagnosed in his late 20s.
We are at the bottom of everyone’s list!
My partner has inclusion body myositis & was diagnosed in his late 20s.
I’ll sign the petition!!
I am not looking to get married but I have a problem that ties into this with healthcare. I did sign the petition. However, I used to teach school. Because of that I recieve for what is considered to be too much income for Medicaid. However, I desperately need their services to help keep my house cleaned, cooking and to get to doctor appointments and the grocery store. Right now I am struggling with daily tasks because of this and I am a single mother of a 5 year old. It is really hard for me to make sure I keep a clean place for him to stay, in addition to the other things. I have no help in my life to get these things done. So it feels like I am being penalized because I actually pushed myself to work as long as my disability allowed me to. I am a dwarf with severe arthritis and have been through many surgeries.
Thank you for sharing your story, and I’m glad you were able to make it work!
I hope that you could one day get married, because even with advanced directives and letting my partner be my rep, she has been kicked from my hospital room. I was told by the nurses she was not my relative, so it did not count. It is just ridiculous what we have to go through.
One of the things we hope to accomplish is raising the amount of money that people with disabilities can make, which would also make it better for those of us with disabilities to work. It could tackle two issues with one decision.
A lot of people just don’t get that we need these services to survive, so there is no choice for us.
Well so far we’ve been fine. We live in Portland, Oregon & Noah receives his healthcare through OHSU, they’ve been great with everything. I’ve never had a problem with any healthcare professionals in dealing with Noah’s needs, and we’ve had some intense times there. Always very supportive and helpful. I don’t know, perhaps it depends on the state & the protocol of the facility ? I’m so sorry that you’ve experienced such negative treatment Dominick….it’s hard enough when your loved one is ill let alone not getting information you need.
I think it is sad to know that instead of our government promoting the family unit, it is making it more difficult and less attractive. Perhaps we need to follow the money to find out the reason for this.
Do you really feel that way? Do you think that if two people with physical disabilities fall in love, they should be penalized for getting married? Do you really think that the penalty should be lack of services?
This article really touched me I am “married” to my husband 3 years now we are both disabled but can’t live with each other or legally say we are married I feel like to the government our marriage is just a joke
My partner had a stroke in March of last year. We intended to be married but found that the VA would combine my disability income, which would up the cost of services. This makes his healthcare unaffordable, so we will remain unmarried. So close, so far.
I worry they will see this and penalize you for living together. Please be careful what you put out there with your name on it.
Medicaid is the only thing to allow home health aids. With our expensive I surance it is not covered at all. My husband has to stop working so we could get the needed benefits.
This may work, for women with disabilities. But for guys with disabilities? Forget it! If that day comes that it is announced that people with disabilities can marry and retain their benefits, there may be disabled women getting married, but disabled men will be getting their faces stepped on! I can even imagine American women even shoving guys in wheelchairs right over and watching them smack their heads on the sidewalk on that day! American women are ruthless gold diggers! They ABHOR guys who are disabled and can not work! American women want immensely rich, robust Alpha men without defect, without handicap, and without disability. Guys who have collections of luxury sports vehicles (Ferraris, Bentleys, stretch limousines, monster pickups, etc), a mega mansion in a secluded, gated area, guys who have at least a stable 8 or 9 figure income, and guys who either have overtime professional jobs or who are violent killers who get their 8 or 9 figure incomes through violent crime and illegal drugs They want guys that are on top of the world. One tiny little sign of weakness, and it’s over.
Any low income American guys, disabled or not, who want to marry, have two choices; either get out of America, or chop their genitals off and declare all women as man’s #1 enemy and the celibate life as a cross that they shall carry.
I can easily count no more than maybe two or three women that are like you in America’s toxic, soulless, disconnected, hateful, paranoid, gold digging culture! I mean, you married a disabled man, and there are women all over America divorcing their husbands for having a slight drop in their (the husband’s) income, or because she met a man with more money.
My partner and I have been together for 5 years he has schizophrenia and I am bipolar. We would like to get married but he would lose what little he has in SSDI and some of his health insurance. Sometimes I can work and do ok and sometimes I’m too ill. I stay with my mother who is elderly and needs my help and sometimes I stay at his place, a federally subsidized HUD place. His landlord just told him I”m not allowed to stay here more than 14 nights per year! So not only can he not get married, effectively he can’t have a girlfriend. I’m livid. It’s a human right to have family and relationships but the system takes it away and how is he supposed to have any hope in a world like this. People without these problems have no idea how lucky they are..to be able to get married without unreasonable penalties, to have your girlfriend of 5 years stay the night more than once each month. It strips him of his dignity and self worth. It’s caused him to relapse after steadily getting better for years. He doesn’t think his life is worth living now. Being alone in his cell waiting to die, he says.
Pingback: My Life Doesn't Belong On Waiting List - Audacity Magazine
Pingback: My Life Doesn’t Belong On Waiting List | Audacity Magazine