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Brian Lehrer: It's The Brian Lehrer Show on WNYC. Good morning again, everyone. Now, another marriage equality. Millions of adults living with disabilities cannot get married without risking losing some or all of their benefits, including their monthly payments and insurance coverage. Under these conditions, many Americans who might otherwise get married, choose not to unless they face what are commonly called marriage penalties. Dara Baldwin, director of national policy at the Center for Disability Rights is with me now to talk about a bill in Congress called The Marriage Equality for Disabled Adults Act and the issues related to it. Hi, Dara thank you so much for joining me. Welcome to WNYC.

Dara Baldwin: Hi, thank you for having me.

Brian Lehrer: The Marriage Equality for Disabled Adults Act was introduced to the house in January of this year by California Democrat, Jimmy Panetta, I see. Can you tell our listeners about this bill and why you think it's necessary?

Dara Baldwin: Sure. Thank you. Right now we only have two co-sponsors and one of them is from New York, Joe Morelle. The other is Raul Ruiz from California Democrats, both Democrats. What this bill will do is make sure that people with disabilities who are receiving either SSI, which is Social Security Insurance. Sorry, we speak in acronym. I'm from DC. DC statehood. SSDI, Medicare, Medicaid, either Section 8, sometimes welfare and food stamps, which we don't call food stamps anymore, but they receive those social services will be able to get married and not lose those penalties.

It also changes some of the language that is in those services. Remember, those social services are from the 1930s where you have the ableist and racist new deal that was done that left out really a lot of people but also still uses language for people who are married as husband and wives. It would change that language as well as provide people with certain disabilities and not all disabled people, but some disabled people must depend on these services to live their lives and they are penalized if they get married or if they get married to another person with a disability because it is based on your income and the amount of money you have in your savings.

If you go over a certain amount in your savings as a disabled person, they will lose those services. These are old laws and ways in which things are done are to make sure people with disabilities stay in poverty instead of getting out of poverty. The other way it affects them is if they marry a person who is nondisabled because then the burden falls on a nondisabled person to take care of the disabled person. If you have a disability durable medical equipment, crutches, canes, wheelchairs: electric or manual are expensive. It is expensive to be disabled, and that is why we need to have these programs for the community.

If they marry someone who's nondisabled, which I'm non-disabled, I've been married to a person with a disability and it would fall on us as a family that is a large expense to take on where a lot of insurance companies don't cover that. Many disabled people choose not to get married because they will have these penalties and not be able to live the life they want to live, but at the same time, they don't get to have love and they don't get to have what we all have, and that's because of old laws that were happening. Sorry, go ahead.

Brian Lehrer: Are you describing basically a form of means testing where if a person with a disability getting federal benefits because of that disability marries somebody with enough income that boosts their family income above a certain line that that's when they lose the benefits or is it more complicated than that?

Dara Baldwin: It is more complicated than that, but it's just as easy as that. It depends on the disability and it depends on the family and the situation, but it is really based on their income and what they have in the bank is the other side of it. They're not allowed to save a lot of money. There was a bill that was passed into law years ago called the Able Act that does assist people with usually developmental disabilities. You have to have your disability before the age of 26 and one day.

Which is usually people with developmental disabilities or disabilities you're born with, not people who get it afterward. Unfortunately, any veteran who gets it afterward, or if you have a spinal cord injury or things like that, but that would allow them to save money and also use that money for different things in their lives, but it is a means test, and it is a process that keeps disabled people in poverty.

Brian Lehrer: Listeners, anybody with personal experience along these lines, anybody with a disability for whom the current law at the federal level is a disincentive for you to get married, a kind of marriage penalty. Call and tell us your story and what The Marriage Equality for Disabled Adults Act might do for you or other people you might know in that situation.

Call and tell us your story if you have one along these lines. 212-433-WNYC. 212-433-9692, or tweet @BrianLehrer for our guest Dara Baldwin, director of national policy at the Center for Disability Rights. Let me ask you to talk more about one of the categories that you mentioned in your first answer. People with disabilities marrying somebody without a disability. I've seen this compared even to the old bans on interracial marriage. Just because you have people from two different categories under the law, disabled and not in this case, with particular barriers to them getting married. Is that a comparison that you make or that you've heard?

Dara Baldwin: Yes, it is a comparison, and I want to go back even a little further so we could talk about the history. This week, actually tomorrow, July 26th is the 32nd anniversary of the ADA, the Americas with Disabilities Act: the civil rights law for disabled people. It is the floor, let be very clear here, but the ADA people think it's about doors and ramps and it's not. The ADA is about community integration.

Because in 1896, we have what's called ugly laws. Many people don't know them, just Google it, ugly laws. They started in San Francisco, California, and what that said was that as a disabled person you cannot be in a public space. Why? From our history in this country of who and what disabled people are, we don't think of them as being in the community. The ADA is about community integration, specifically getting people out of institutions, because then with the new deal, as I said, racist and ableist new deal. They decided to put people in institutions, you were born with a disability, they put you in an institution.

Willowbrook, New York where it happened, Senator Jacob Javits broke that and showed how the abuse of people with disabilities. He created the Protection and Advocacy program. We have the CIL program, Centers for Independent Living, who I work for. My CIL is headquartered in Rochester, New York, who we are there for the services to keep disabled people in the public. What the ADA says is that anybody with a disability, no matter what it is, can and should be in the community. That's part of being in a community.

Part of living in a community is lots of things, housing, education, employment, transportation, and living your life the way in which you want to live in. If you want to get married and have a partner, you should be able to do those things, and there is an intersectional process here and advocacy here. They just passed a Marriage Equality Act in Congress for LGBTQ folks, why wouldn't they do it for the disabled? Why couldn't we add this in there? You cannot say you're going to talk about intersectionality and social justice and think that LGBTQ folks are not disabled as well. In fact, many of them are because of the harms that happen to them, and so this is what happened.

Brian Lehrer: You mentioned the so-called ugly laws. I've seen this also refer to as unsightly beggar laws which literally criminalized being disabled in public, and I understand that those are pretty much gone. Chicago might have been among the last places to repeal their so-called ugly laws, and that was back in the 1970s. Tell me if you think that still exists to any degree, and how that story that you just told about ugly laws relates to the Marriage Equality Act for disabled adults that you're promoting now.

Dara Baldwin: You're correct. In the United States, Chicago was left, but the ugly laws went around the world. They still exist in Russia and Belarus, and when what happened in Ukraine and when we were trying to help people get out of Ukraine and especially disabled people, we told them do not go east go west. Because in Eastern Europe, the ugly laws still exist. How that affects also in the history is that many states around the country chose-- Yes, they said that disabled people could be in the community, but they chose to tell them what they could do in their lives and states like Connecticut, Pennsylvania, Ohio, Kansas, Minnesota, Michigan chose to say you who have developmental disabilities, mental health disabilities, epilepsy cannot get married.

Some states told people who were deaf, they couldn't get married. They added to those disabilities. That stigma continues, and it still continues even though supposedly it's also connected to eugenics and saying that disabled people were not allowed to procreate. We had a lot of disabled people- I'll say people because it's more than just women who we produce, -who were sterilized. We actually see sterilization still happening around the country. It just happened in Georgia with the immigrants in the detention center where you had doctors who were giving women hysterectomies without their permission. Some of them were disabled in institutions.

How that connects to the marriage equality law is that these things stop people with disabilities from having a life that is community integrated because being married is a part of a life that people choose if they wish and they fall in love and want to get married. These barriers, the way in which these things are done, the ugly laws, eugenics, sterilizing, telling people with disabilities you should not be in the community add to the fact that says that you should not be married.

Brian Lehrer: Also joining us for a few minutes is Lori Long, a California resident who has been engaged to her fiancé Mark since 2016. She created a petition called Lori's Law and worked with representative Panetta who introduced this Marriage Equality for Disabled Adults Act that we've been talking about when she realized that she would face marriage penalties if she and Mark tied the knot because she is disabled and Mark isn't.

Lori Long, thanks so much for joining us for a couple of minutes. I think you know Dara Baldwin our other guest, director of national policy at the Center for Disability Rights. Hi, Lori.

Lori Long: Hi, good morning. Thanks for having me on today. I have certainly heard of your guest. We have not yet had the pleasure of meeting in person.

Brian Lehrer: Tell us a little more about your story.

Lori Long: All right. Mark and I met, fell in love. We were engaged to be married in Christmas 2016 and we were planning a wedding, the normal stuff of looking at invitations, looking at venues that fit our modest budget, and things like that. We learned along the way that if I was to marry someone not also disabled, also on some form of a social security disability benefit or some other form of a secondary social security benefit then I would lose every bit of Social Security Disability Insurance known as SSDI including my life sustaining healthcare through Medicare and secondary Medicaid medical in California.

We fell apart a little bit and then Mark said, "Hey, we're going to get through this. I love you and that didn't change. We're going to work this out. I don't know how but let's work on this together." One day I decided to take a letter I'd been working on for months and I knocked on my congressman's door. That was Congressman Jimmy Panetta and it all has taken off from there.

Brian Lehrer: He introduced this act. Lori are you dismayed that he's only gotten two other co-sponsors for this bill? At least that's what Dara told us a few minutes ago.

Lori Long: I think that we're going to be a little dismayed at first but you have to remember this is a-- I don't want to say necessarily a new concept but it's relatively unheard of to a lot of radio mainstream community. They didn't realize that this was happening. That if a disabled person married a non-disabled person not also on social security that they'd lose all of their disability insurance. I think as we work to get the word out, we're specifically working with DREDF which is the Disability Rights Education and Defense Fund based out of California. Claudia Center is the legal director there and Isha Lewis is also one of our attorneys and advocates. As we advocate for this and as we get a little bit more media going and let people really know what's happening we're hoping that that's going to change.

In the not too distant future, our state legislation introduced by Senator Anna Caballero which is SJRH known as Lori's Law urges the Congress of the United States as well as the president to fix this. It will make California the first state in the nation as far as we know to call out current policy as discriminatory and needing fixing. I think the more media we get, the more attention that people bring to this the more co-sponsors we're going to get. It's not a guarantee but that's what Mark and I really--

Brian Lehrer: Lori, good luck to you and Mark. Personally, I'm happy to be a little part of raising people's awareness about this question. People will decide for themselves what they think about the idea of Lori's Law or the other act but it's so new to so many of our listeners, I know. I'm really glad we had you on and we can at least people get engaged in thinking about this question in most cases for the first time. Good luck and thanks for joining us.

Lori Long: Of course, you have a good day now. Everybody thanks so much for talking about this really important disability rights subject. We'll catch up with you later. Bye-bye now.

Brian Lehrer: Here's a caller from Bushwick who I think has a similar story to tell. Paisley in Bushwick you're on WNYC. Thanks for calling in.

Paisley: Oh yes. Thank you for having me. I think what your guests have said is just pretty much similar to what I have to say. I have a sister, she lives in Pennsylvania. She has multiple sclerosis. She had to jump through enormous hoops to prove that she was eligible for social security disability income. She's been with her partner for many years. They have a great relationship.

Lots of people ask them about whether or not they're going to get married and she always has to explain to them that if she gets married to him she'll lose her social security disability income and that they rely on that for their living expenses which are higher because she has multiple sclerosis and so they can't ever really get married. I wasn't aware of this push. I will agree that most people aren't aware that this is a blockade for most disabled people.

I appreciate that there's someone out there trying to do the work to get fairness and justice for people with disabilities. I also think that in general disability rights are pretty invisible and disabled people are pretty invisible in our society and we should be doing a lot more to make sure that they are living a life that's as rich as possible and as close as possible to what the rest of us get to enjoy.

Brian Lehrer: That their stories get centered like anyone else's. Paisley thank you so much for your call. I'm going to take one more which I think is not about marriage per se but even just having roommates in this same category. Joey in Orlando you're on WNYC. Thank you for calling Joey. Hi, from New York.

Joey: Thank you very much, Brian. I was telling your caller that basically your maxed out at 841 a month and say if you want to move in with other people who want SSDI and you wanted to join together to get an apartment or whatever. They lower your income which defeats the bases of you ever having a chance to live a decent life. It works either you're married or not married or say if you have a sibling like a brother or sister to both live together so you could try to make ends meet, they also will lower your SSI or SSDI so it defeats the purpose altogether.

Brian Lehrer: Joey thank you for adding that wrinkle. Dara, as we start to run out of time you've heard these stories, you know these stories, you've been telling us these stories and now we have some callers with their personal experiences. What does the act actually do to fix this? If it's a means testing problem in the first place, is it largely that the line is too low and so people who get married or people who even get roommates like Joey was just describing from Orlando get penalized because the line is too low? If the bar was set higher on the total amount of household income before you would lose your SSI that would fix it or is it something else?

Dara Baldwin: It's a combination of those things. Thank you to everyone who called in. I agree with the callers that disability issues are issues that are not known to people. What this bill would do would change all of those lines that we talked about. It would really eliminate any of the social security things that are on here, the income. It would also make sure that people would be able to keep their Medicaid and keep their certain services that they need through the law. It will also look at the income and resources and change that deeming rule within the social security act so that it doesn't take that into play and it's not part of the means test. It will remove that completely. It's something that we all think that is needed.

Although Lori says it's new, it's not. People have and the disability people have been working on this for about 30 years, but that's also part of the problem when you speak to each other. That's what intersectionality is about and by talking to other groups and having other people get involved and having people like yourself in the media really uplift and talk about disability issues is how we get things moved forward.

I do, I see this getting some more co-sponsors just because of this newscast like I see representative Bonnie Coleman from New Jersey who was just on with you this morning will get on the bill and especially all the New Jersey, New York members, they should really be on here. Anybody, if you're going to support marriage equality for the LGBTQ community, then you should be supporting marriage equality for disabled adults act.

As we say, intersectional, I don't care what part of your life you're in you, there are disabled people. Formerly incarcerated, refugees. All of the people, male, female, non-gendered, all of those people, people of all religions and faiths, people who are non-faith, it is part of our lives. We should be out here supporting this. Before you ask, I will tell people, just call your members of Congress and tell them to get on this bill. It is only in the house, that's the other thing. We need a Senate bill. You need two sister bills. Maybe Senator Jill Schumer might join in on this. Anyway, make sure you call your house members and tell them again, our HR6405 today.

Brian Lehrer: Dara Baldwin, director of national policy at the Center for Disability Rights. Thanks so much for joining us. Good luck.

Dara Baldwin: Thank you.

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