>> From WXXI News.

This is Connections.

I'm Evan Dawson.

Our connection this hour is made with a phrase that I know you have heard before.

Marriage equality.

When you hear marriage equality, there is almost certainly an idea that comes to your mind.

And it's about same sex marriage.

It's about the fight in this country for years to recognize equal marriage for gay couples, LGBTQ community.

Maybe the Obergefell decision.

But when you hear marriage equality, that means something else in the disability community.

And that is what we are learning about today with the launch of a new podcast, a new series from WXXI hosted by my colleague Noel Evans, a series of conversations with Self-advocates.

It's very.

It's called Move to Include.

Very simple.

You've heard Move to Include on this program before, and we've had stories like you're going to hear not only this hour, but all week on this program reported from the WXXI Inclusion desk as part of the Dialogue on Disability week, which we are doing right now.

It's a partnership between WXXI and the Al Sigl Community of Agencies in conjunction with the Herman and Margaret Schwartz Community Series, and it is launched today.

It's a big day.

We want you to listen to this podcast when all six episodes drop, but we're going to have the first full episode in just a moment.

Now, in the disability community, particularly for people with intellectual or developmental disabilities, self-advocacy is all about knowing your rights, understanding your needs, speaking up for yourself, whether that's at work, in healthcare situations, at school, and yes, in relationships.

So over the course of six episodes of this podcast, listeners and viewers can hear directly from Self-advocates about their experiences.

First episode is out now, and it's about something called the marriage penalty.

We're going to listen in full right now.

>> You're listening to the Move to Include podcast.

I'm Noelle Evans.

B.J.

Stasio was a young man just out of college when he first learned about something called the marriage penalty.

Here's how it works.

People with disabilities who rely on Social Security or Medicaid are often discouraged or penalized for getting married.

It can mean losing income or health care benefits.

When he learned about this, BJ says he was activated.

He couldn't take the injustice of it, and he reached out to an organization called the Self-Advocacy Association of New York State, or Sainis, that set him on a journey to becoming a self-advocate and disability rights activist.

The more he advocated for himself, the more he found himself advocating for others.

For the last 20 years, that's what he's done as a peer advocate with the office for people with Developmental Disabilities, or OHP.

But despite years of activism, the marriage penalty persists.

Later in the episode, we'll talk with disability rights attorney Stephanie Woodward.

She'll help us unpack the federal benefits eligibility rules that perpetuate it.

But first, my conversation with BJ.

BJ, thank you so much for being here.

>> Thank you.

Glad to be here and glad to educate about disability rights and sharing your story and talking about all the things we're going to talk about today.

>> I can't wait.

So talking about self-advocacy, do you mind just sharing like what that is to you, how you define it?

>> Well, yes, self-advocacy is speaking for oneself and for others.

And I find myself always thinking about speaking for others because my story is also their story, because people who are going through the same thing, things as I am have a lot of similarities in what's happening in their lives.

So I try not to tell my story directly, but combine my story with other people's story.

>> Where does it begin for you, like in terms of stepping into self-advocacy?

Did you know it was a space that you could be in?

>> No, I kind of found it by an unfortunate internet search.

I was looking for something to do after college because I have a computer programing degree, but nobody wanted to hire a guy with a disability, so I needed to find something to do.

And I kind of was thinking, maybe someday there will be somebody who will love me and want to marry me.

So I started doing some research about something I knew about the SSI marriage penalty, and wanted to fix that for other people, because I've heard a lot of other people's story.

I didn't have a story yet because I didn't have a relationship yet, so I was just searching around and ended up coming across the Self-Advocacy Association of New York State and asked them to help me with the marriage penalty, because I realized there were some states that were already out against it and trying to trying to get rid of it on the federal level.

So I wanted New York State to join that.

And okay, that's kind of how my journey into self-advocacy got started.

>> The marriage penalty, exactly what you're talking about, what that is, you're saying Social Security, income benefits being eliminated.

If somebody chooses to marry?

>> Well.

>> If they if they are disabled, right?

>> Yes.

Well, actually, it's actually considered like, say, if it's to two people who are disabled who choose to get married, who choose to get married, let's just take it from that point of view.

The two checks become one check between the the couple.

And even if you decide not to marry, let's say you you identify yourself as a as a couple and you're living together.

You will get nailed from Social Security.

What is what is called holding out.

And they'll penalize you for that because you admitted you were in a relationship with somebody like that.

That's why.

That's why I never say, oh, don't say you're a couple.

Just say you're living together because nobody needs to know that.

>> Holding out.

You can be in trouble for that, too.

Can you?

Do you mind just elaborating a bit more on that?

Like.

Well.

>> Because you weren't upfront with the relationship that you were sharing bills with somebody and you could get you could get penalized for that holding out.

>> What are some of those penalties?

>> pay back the money that they already gave you.

Or maybe a spend down, or maybe you could get it waived based on your circumstances.

But it's a lot of red tape to go through.

And luckily for me, when I was in my relationship, I found a job that could support me.

So I didn't need the benefit.

So I didn't require the benefit.

So luck.

Luckily for me, the chips fell the way they fell for me and I didn't rely on the benefit.

>> And you're saying there are people who were not as fortunate and so you could marry someone with $3,500 in savings, and there goes your stipend.

Yep.

For Social Security.

Yeah.

>> Yep.

But as I remember, you know, my my self-advocacy journey started even before saying this.

When I was 16, I protested the lack of access to a restaurant.

I wanted to have dinner with some people I knew, and they said they didn't have access through the through the front door because they had stairs.

And when I called the restaurant, I said, I want to eat there.

How do I get in the restaurant?

Oh, you use a wheelchair.

You can go in through the kitchen.

So I chose to get a group of group of people with disabilities together who I knew in the Buffalo area, and protest the restaurant.

Of course, I take it to the nth degree and get myself stuck in the not dry cement on the sidewalk, in the cement dries around my wheels.

So they kind of had to jackhammer my chair out of the sidewalk, which.

was which?

Which was my intent.

>> Wow.

Okay, so first of all, I mean, had you planned to do this at a time when there would be wet cement?

Like, how did that.

>> Well, I knew by watching and observing that the cement was wet because I lived across the street from the place where the restaurant was.

So I was watching and I said that would be a good way to make a statement.

>> Interesting thought process there.

>> I'm I'm always thinking three steps ahead of what I'm about to do so I can plan out how to make an impact with what I do.

>> What was the message you were looking to send?

>> If you want people with disabilities to come to your restaurant, you need to make it accessible.

>> One of the.

There are so many threads I want to pull from what you had said earlier.

One of them, when you had said that you wanted to be able to love somebody and to not be penalized for it.

If you chose to be married, right?

Yes.

You're also talking about a situation where you want to enter a restaurant in order.

I mean, I'm just thinking of dating, being part of the process of getting to know somebody and then develop those relationships to the point where you would be in a place to consider marriage and then hit that barrier.

Yes.

So before diving a bit more into the marriage penalty, I'm just curious that aspect of this, that those limiting factors to community, like being in community in public spaces, being able to date in that way.

>> Well, it's all about a person's choice and belief in themselves.

Nobody should tell you what relationship you should have just to make themselves feel comfortable.

Because for me, it's been it was a journey of self exploration and finding out what I wanted for my life.

Contrary to what people in my life said.

You know, I always went against the grain, it seemed, and that was the way I still live my life today.

I push against the grain all the time or what is considered normal.

There is no such thing as normal anymore.

Live every day is as if it's another day.

And if something happens, then it's time to activate.

>> When you talk about activating, what does that look like for you?

>> It's just it's just always kind of like for me I was born in October.

I was supposed to be born in December.

And luckily for me, I was a Libra born in October and my birth sign is the Scales of Justice.

And I always want to tip the scales of justice to fix an injustice.

That's what I want to do.

That's what I always want to do.

Like, if I see somebody being denied or told no that they can't do something, explain to me why the answer is no.

Because all you need to do is ask why?

And if you don't like the answer, you have a right.

As a U.S.

citizen to ask again.

And believe me, I will ask the question until it makes sense.

I just won't take a no.

I'll just keep asking until I get the answer I'm satisfied with, or we have a longer discussion.

Like most of the politicians I know, and I'm sure some of the politicians who will hear this, who know me, will love when I say the first thing I want to do is make you mad at me to have that uncomfortable discussion, because that's where the real dialog happens.

When you have that uncomfortable discussion, it's not a warm and fuzzy take a picture with a disabled guy.

I'm not one of Jerry's kids.

I'm not going to do that.

>> You're gonna have your wheels stuck in wet cement that's hardened around your wheelchair.

Yeah.

>> Yeah.

I'm not I'm not gonna I'm not going to take an opportunity to be a photo op for a politician to say, look, I was with a representative of the disability community.

One person does not mean you support a disability community.

Taking a picture with one person doesn't mean you support a whole disability community, because you haven't taken the time to know their stories.

>> That goes back to, as you mentioned, about self-advocacy isn't just for one person.

>> No, no.

>> What's at stake here?

If the marriage penalty continues?

BJ.

>> A lot of people not living the lives that they want and taking what society taking what society expects of them and cheating them out of the best life that they want for themselves and the the right to share your feelings and your love and your emotions with whoever you choose.

That's that's what's at stake here.

It's it's all the marriage penalty and everything else in today's society is all about making choices.

And when the choices are robbed from you or not given to you, because society seems to think this is this is the box you belong in, that that's where you're going to stay, because that's where you're safe.

That's not a life like I always say, you can never fit me in a box.

There's not a box big enough.

So I'm I'm not going to do that.

>> I do want to stick with the stakes because as you mentioned, I mean, there's dignity as well.

Yeah.

In this.

And then there's also the economic hardship.

>> Yep.

The economic hardship.

And the perception that people with disabilities can't love, which is so far from the truth.

People with disabilities have a lot of love to give.

You just need to let them give it, let them give it.

And if they want to share it, they'll share it.

If they don't, they don't.

That's their choice.

For me, it's all about dignity of risk and choice because that's what love and relationships is about.

Dignity of risk and choice.

>> Dignity, risk and choice.

Yeah.

>> Yep.

>> What are some of the I guess, the challenges now with removing the marriage penalty in the work that you do?

>> Probably the fear because people sometimes project their fear of what is going to happen to you, on to you, which makes you more fearful.

Instead of going on the journey with them and learning with them.

>> Who are those people that you're talking about?

>> Well, it could be.

It could be a care coordinator.

It could be a family member projecting their feelings of, well, you were safe here.

Why would you want to do this?

Well, like I like I said, it's the person's life and the family.

The family member probably might not live as long as you.

And you'll be stuck without the relationship you wanted because you listened to them.

When you throw in the concept of a relationship.

Oh my God, that turns things upside down.

Like you're going to have these feelings, you're going to have these emotions.

You might have a breakup.

You you might have another relationship after the breakup.

Well, it's a part of life.

Get used to it.

>> Fair.

>> You know, it's kind of it's kind of a it's kind of a weird thing when we live in, when we live in, as I call it, projection reality.

Because, you know, I did that for a while.

Like, I wanted to be safe.

I wanted to be in my bubble.

But then then I realized, you know, that's not where I need to be, because I don't need to live in that bubble, because that bubble will burst and I won't know what I know now, because some days the bubble is going to pop.

>> And I think, I mean, to your point, there's so much value in that and things not going the way you hoped they would.

And then how do you and then what?

Right.

And then discovering that for yourself, it sounds like that's what's also being taken away from people.

>> Yes.

Because hurt hurt is a part of life.

Mistakes are a part of life.

And if you don't experience that hurt, you can't grow as a human being and move on to the next part of your life because you're stuck in the hurt.

You're stuck in the mistake you made because that's what so many people want you to do.

They want you to be stuck and reliant on them.

When you need to rely on yourself.

Yes, you need supports.

Yes, you need the daily help.

But it's always going to be there.

You know, the daily help that you need to live the life you want.

But to have the life you want, you need to think about what you want for yourself.

Forget about what other people think you're you're going to make mistakes and it's fine.

God knows I've made many mistakes and I'm still here.

I'm still kicking, I'm still punching, and nothing's happened yet.

>> What are some of the wins for you?

>> The the wins probably one of the biggest wins was the shared space that we have in Western New York.

Opwdd and Sandy's office on a bus route.

That's probably the biggest win for me because the, the institutional grounds where the Sandy's office was located was the, the the place became an accessible by public transportation.

So therefore, those of us who had to take public transportation couldn't get to work.

So that was a big win.

And that took ten years of talking to elected officials, talking to op, getting community support.

And it just took an entire community ten years to get that win.

So that's probably one of the biggest wins for for our disability community in Western New York.

And one I am the most proud of.

So that's probably the biggest win, because the wheels of advocacy, you might think, move fast, but they move really slow and you have to be persistent.

And I am not patient, so I'm not even going to talk about patience.

I'm just going to keep moving the boulder, the the best I can.

I hope people follow behind me.

>>, patience.

I mean, we also have this history throughout the 1900s of institutionalization, of forced sterilization, of eugenics.

And to go from that to these threads that still hang on as to the ability to be married, the perception of whether or not somebody is fit to be in romantic and sexual relationships with other adults, like, yeah, that's it's a long history.

>> Yeah, it's a long history.

And you, you can write your own history and hopefully your history will influence somebody else's.

Like, I hope the stuff I'm doing now, somebody will see it, read it and understand it and know where, where I came from, where I'm going and where I hope to go.

I hope they join me or they find some other groups to to join in whatever fight they have.

And maybe we could all come together to fix one common thing, because there's a lot of things yet to be fixed.

And I think one of the things is public perception that people with disabilities belong in the communities in which they live, not not just that they're there and, oh, they have staff with them, like, like I've gone to public places, like I've been in the weirdest place of a bathroom and ask somebody to hold the door open for me when I was done.

And one of the responses from one of the people was like, where's your staff?

they're not with me at this moment because I'm in the bathroom.

I need you to open the door.

So could you let me out, please?

So that's one of those perceptions that needs to to change.

People might not need the support of staff all the time.

God knows I don't want staff with me all the time because they have their own lives, I have mine, I want to live it without every moment of my life being what I call billable.

I just want to live my life the best way I can.

>> That point of other people kind of seeing it as like, not their problem.

It sounds like is.

>> It?

It's it sticks with me.

It does like people, people with disabilities need to realize that they have value.

You have value.

You belong in the communities in which you live.

Instead of being sheltered away and not doing, not doing the thing you need to do to have the life you want because it's your life.

You're the only one who's going to live it and make the best of it.

>> That was B.J.

Stasio.

He's a self-advocate and disability rights activist and a peer advocate with the office for people with Developmental Disabilities.

When we come back, we have a conversation with Stephanie Woodward, a disability rights attorney.

Stephanie Woodward wears many hats.

She's an attorney and activist, a mom to six kids.

She's the co-founder of the disability Empowher network, an organization dedicated to empowering girls and women with disabilities.

She also knows a lot about the marriage penalty, what's at stake, and why people with disabilities still face discrimination in some of the most intimate areas of their lives.

Stephanie, thank you so much for being here.

>> Thanks so much for having me.

I'm excited to talk to you today.

>> Do you mind sharing how you encountered the marriage penalty?

>> Oh, sure.

That's been a conversation in the disability community for a really long time.

because there's a lot of misconceptions about the disability community.

some big misconceptions about how, like, perhaps we a lot of people assume we don't have relationships.

We don't have romantic relationships, we don't have intimate or sexual relationships.

None of that is true.

but there are systems in place that make marriage equality not feel very equal.

when it comes to the disability community.

And this conversation started coming up a lot when we saw that our allies within the LGBT community being able to get married and have that fully recognized, and everyone saying, well, now we have marriage equality in the disability community, like sitting in the back, raise our hands and be like, oh but what about us?

Because we can't get married without risk of losing benefits that literally can keep us alive.

Sometimes.

>> Do you mind digging in a bit more as to like what is at stake here?

>> Absolutely.

So I find that sometimes it's good to talk about the overall picture and then get into perhaps an example of how this could impact somebody.

So when we're talking about benefits, we're not just talking about like a Social security, monetary financial benefit.

We're talking about health care benefits, which are really important because we live in a world where health care is not, not equal to everybody.

And so when we talk about health care, the disability community is, by and large, covered through Medicaid.

It's one of the biggest payers of people with disabilities.

for our health care needs.

And with that, if you go over a certain income threshold, you are no longer eligible for Medicaid.

and when you get married to somebody, their income counts towards your income, even if that means they you'll be cut off from the insurance that covers you because other insurers, despite a lot of laws moving forward in our country that say discrimination is not allowed in insurance, there are a lot of ways that it is still very much alive and active.

And one of those ways is premium increases based on usage.

So if you want to if I'm a person with a disability and I want to marry someone who runs a small business, that they are now paying for their own insurance through the business, right?

If their usage rate goes up, then their premiums go up for the next year.

And of course, as a wheelchair user, look at my wheelchair.

This is not a cheap little baby.

This costs more than most cars.

Most nice cars.

The usage rate would go up for them.

So of course I want to keep my own insurance.

I want to keep medicaid.

Right?

But if I want to keep medicaid, I can't marry the person I love.

and for me, it's a wheelchair for someone else.

think about attendant care services.

A lot of people with disabilities can live beautiful, integrated lives in the community, but they need help getting in and out of bed in the morning, perhaps help taking a shower.

>> Medicaid will cover attendant care services.

Most private insurances will not cover attendant care services.

So this is causing this cycle of poverty that we have to stay poor enough so that Medicaid will cover our attendant care.

Because if we get too much money, we lose the attendant care and then we lose our ability to make money, right?

So if you lose your attendant care because you married the person you love, how do you get in and out of bed every morning?

>> Are there any workarounds for folks in the disability community who are, you know, falling in love and want to pursue that?

>> I mean, I think that there are ways that New York State has attempted to make some things a bit easier.

so there is a spousal refusal, which is really hard, where essentially we see this a lot when someone needs a nursing facility or attendant care level of care as they age.

Essentially, a spouse has to sign a piece of paper saying, I refuse to care for my other spouse.

And we know that that is just a piece of paper, right?

It's just a piece of paper.

You're sign saying, I'm not going to take care of my spouse so that then they can get the care that they need provided through the state.

There are so many couples that the spouse that has to sign saying, I refuse, they won't do it.

They're like, I've been with them for 60 years, and today you want me to sign a piece of paper saying, I, I won't take care of them like there are other ways that people have tried to navigate this, but you're never going to replace what marriage is.

In our society, we value marriage so much.

We value being able to like, show off the proposal.

The how many TikToks have you watched with like, make sure she's not holding her purse or the perfect ring is on and the perfect way.

And like waiting for those coming down the aisle pictures, those first kiss pictures, like.

>> Those rites of passage.

>> Those are beautiful moments in a person's life that you're telling disabled people if you want to live, if you want to have the health care you need, then you can't have that.

it's painful to watch as you see your friends who want to get married and instead they say like, oh, I can't marry the person I love.

But like, maybe we'll have like a little ceremony to celebrate our relationship, which is lovely.

And I'm so glad that they are doing that.

But we are just as valid of human beings as everyone else, and we should be able to have the same legal rights as everyone else and the same celebrations as everyone else without having to modify it based on disability.

That just it doesn't make sense.

and it really devalues the true relationships that disabled people have.

>> A thought.

There's so much that goes into relationships, right?

Like there's the dating phase, there's so much more to relationships than just even just a piece of paper.

A marriage license.

Can you share a bit?

Are there other ways that people with disabilities, when it comes to their relationships, romantic, especially any other barriers that come up?

>> There's a million.

but I'll try to keep it brief with just a few examples, because, goodness, we could be here for an entire week on this.

so one thing that comes to mind for me is that there are some people who are living in congregate group settings who have intellectual or developmental disabilities, who are told that they are not allowed to have relationships with other people, relationships.

>> What kind of relationships?

>> Romantic relationships with others.

in fact, sometimes even in New York state, people with disabilities with intellectual and developmental disabilities have to take tests where they quite literally have to name the scientific names of different body parts names that I'm pretty sure like, if you ask the average human on the street, they wouldn't be able to name them for you.

before they can be approved to be consenting to be in a relationship, which is outrageous to me, because if you are a person and you have feelings for another person who has similar feelings back, no one's ever tested me to see if I can be in a relationship with someone else.

But for people with intellectual and developmental disabilities, many of them have had that and had that experience and been told that they can't be in a relationship.

Another barrier that can come to mind for me is guardianship.

There are people with disabilities who are under guardianship, and that is a whole other topic that we could talk about for a long time with a lot of controversy and intricacies in it, but there are guardians that tell the individuals they are not allowed to enter relationships.

They're taking that part of the human experience away and saying, that's not even a choice for you to make, not a choice of who you can love, or just that you can love.

There is someone who wants to be in a relationship, and that person has someone who wants to be in that relationship with them, and they are told no, and it's not this cute, romantic Romeo and Juliet.

It is this abuse of power saying that you don't get to be in a relationship with the person you love, because I don't think you can do it.

>> Or even explore that part of you.

Yeah, or even to see yourself as desirable or to have desire at all.

>> Absolutely.

And like that is a whole area of therapy.

and of disability studies like sex and disability have a lot of well, bad history because of our society telling us that what we should see in ourselves and what we're not allowed to see in ourselves and what we're capable of and what we're not.

And then you have a current administration that has RFK saying, like, people with autism will never be in real relationships.

They'll never have jobs, they'll never live fulfilling lives, which is the exact opposite of what is true, but also the opposite of what we have been working for decades to take away those stigmas and demystify these ideas around disability.

but when we insert that back into our ideology, it makes it really hard to pass any laws that would get rid of a marriage penalty, because the idea is, well, you, why would we get rid of it?

You can't get married anyway because disabled people can't get married.

You have no interest in having relationships.

You can't hold a relationship.

You can't have sex.

The amount of people who are shocked that I have children and ask me how it is done, and I'm like, is health class illegal where you're from?

because the science is the same, but because I have a disability, I'm questioned about it.

Whereas if you said you had kids, people would be like, oh cool, what are their names?

People don't ask me my kids names.

They ask me how they got here.

>> So Stephanie, when it comes to disability rights at large, what is the significance of self-advocacy, especially for people with developmental and intellectual disabilities?

>> I think it's incredibly important because we live in a world where so many people want to talk for disabled people and not listen to disabled people.

The amount of people who think that they know what is best for someone else is astounding.

but the amount of people who want to sit down and listen to what a person thinks is best for themselves is minimal.

And in the disability community, we have a mantra it's nothing about us without us, which means decisions should not be being made about us, without us in the room.

And that seems really straightforward, right?

Like you wouldn't want a bunch of men making decisions about women, right?

Why should non-disabled people be making decisions about people with disabilities, about our lives?

You don't know our lives.

You don't live our lives.

and I think that's really important to keep in mind in the context of intellectual and developmental disabilities, because there are some people in our communities that like to see a disability hierarchy like, oh, I see you're in a wheelchair, but your brain still works like what a statement is that to make?

Or someone with an intellectual disability, getting a community member saying, well, but at least you can walk.

Always kind of pitting us against each other as if like if you have one disability, it's better than the other.

but there's this assumption that if you have a developmental or intellectual disability, then you don't have the capacity to know what is best for you.

And that's just not true.

I think that society at large doesn't seem to have the capacity to understand that even if brains work differently, we're still able to have opinions and feelings and thoughts about our own lives.

And those should be the utmost priority.

>> Can you talk a bit more of like the risks if the marriage penalty continues?

>> You have to think about when they pass away.

There is no inherent right to survivorship.

If you shared a home with somebody.

There's not that inherent right that the home goes to the other married party.

There's a lot more legal complications that come with all of these things that can impact their partner, their families, their children.

it's just a very tangled web that we're weaving that leaves so many people uncertain of what the future holds after they pass away.

>> Are there other risks here, for instance?

I mean, like, relationships can go any direction really, when they go in an abusive direction.

Can you speak to that in the frame of.

>> Absolutely.

So this is something that I think we don't think about enough and it can impact so many people.

So just for a little bit of background, women with disabilities are 2 to 4 times more likely to be victims of sexual assault and domestic violence.

As a non-disabled person and people who are victims of abuse are more likely to acquire disabilities from that abuse.

So like, we just need to put that out there so we understand that the population we're working with is large and susceptible to abuse.

And so if in the context of marriage, marriage penalty, if I was a person who received Medicaid and I wanted to marry my spouse or my partner, I wanted them to be my spouse, and I had to say, well, if that's the case, I'm going to lose my Medicaid.

So I would also lose any sort of financial subsidy that I would be receiving.

So no Social Security, no Medicaid.

But I'm going to give that up because I love you so much.

We're going to make it work.

We're going to figure it out.

Me and John, we've got this right.

So I give up my attendant care services.

I know it's gone.

I give up the Social Security check because who needs $900 a month like I've got John?

We're going to make it work together.

Now.

John and I are married.

I don't have someone to come and help me.

John is my help, right?

And you would think that's what marriage is.

But John, also, when he's upset with me, won't bring me my wheelchair and leave me in my bed for days.

When I tell John I want to leave, he says, well, good luck because I bring in all the income.

Where are you going to go?

John is in charge of all of the finances.

He would see if I even paid for the bus to go somewhere.

When you take away the supports that an individual needs and marriage of course, is a partnership, but that doesn't mean your partner should be in charge of every aspect of your life.

>> What are some of the solutions you have in mind in terms of removing this penalty, keeping people from being in such dark situations?

>> I mean, I think that it can be very cut and dry, like allow a person's assets to only be counted as their own rather than counting their spouse's like that is the most straightforward way to do this.

It seems so obvious.

And yet our country has a really hard time comprehending this idea that two people can get married and still have separate assets like that's okay.

It's not hurting our society to provide that safety net and still allow that person to flourish.

>> Stephanie, we've covered so much in such a small amount of time.

Is there anything else that you'd like to share that maybe we haven't touched on?

>> I mean, I think I just would encourage anyone to go make friends with people with disabilities, talk to us, don't talk to us with any agenda behind it.

Just have a coffee with us.

You're going to learn so much.

And I think that we're all going to be a better community for that.

>> Stephanie Woodward, thank you so much for taking the time to chat.

>> Thanks for having me.

>> That was disability rights attorney Stephanie Woodward.

For more information on self-advocacy, visit our website at Move to Include.

You can support this podcast by subscribing or following wherever you get your podcasts.

Leave us a review and share us on social media.

We're at Move to Include.

This podcast is produced by WXXI Public Media.

>> And this is Connections.

I'm Evan Dawson.

We have Noelle Evans Veronica Volk with us.

I think we're going to go to a short break and we're going to come right back and talk to the principles behind this podcast series right here on Connections.

I'm Evan Dawson Tuesday on the next Connections.

In our first hour, Mark Cuddy is back in Rochester.

He led Geneva Theater for years before retiring a few years ago, and then going to Cleveland for an interim gig.

Now he's back in Rochester with a new project, and we'll talk all about it in our second hour.

It's the state of the state address with Governor Kathy Hochul.

You're going to hear it in full.

Talk to you Tuesday.

>> Proud support for the move to include podcast comes from Mary Cariola Center, where inclusion is an everyday practice.

Learn more at Mary Cariola and from the Strong Center for Developmental Disabilities, working to expand inclusion, improve success, and strengthen opportunities.

Learn more at Rochester and from the listeners of this station.

>> Support for your public radio station comes from our members and from The Golisano Foundation.

Supporting Move to Include programing on WXXI and working with the community to lead change toward the inclusion of people with intellectual and physical disabilities.

Share your thoughts at Move to Include.

>> Org here we are in studio with Noelle Evans and Veronica Volk.

And you just heard Noelle's voice on the podcast.

Congratulations on launch day.

By the way, it's always a big day when you get to launch day for a podcast series.

How are you feeling?

>> great.

Yeah, I'm glad that these conversations are reaching the community today.

Yeah.

>> No.

Two very powerful guests today.

Absolutely.

And we're going to talk a little bit about sort of the why of this series.

And Veronica, as someone who's sort of the podcast czar, what is the title?

>> Yeah, I like podcasts.

I'm gonna I'm gonna put that on my on my business cards from now on.

But it's the director of podcast strategy here at WXXI.

>> The director of podcast strategy.

And so we've decided that this is going to be a series.

It's a six part series, episode one today.

Please share it.

Please find this and share it.

listeners, viewers with people you love because these are important subjects.

Why now on this one, Veronica?

>> For me, I think the move to include podcast is you can see it as sort of like the spiritual successor to a lot of the other work we've done around disability rights inclusion, including our podcast series exited, produced by WXXI with Karen.

And I worked on that too.

And the documentary A Good Life.

I think it's it's really important for us as journalists to really interrogate the weak points of the systems that make up our society.

I think you can learn a lot about society by looking at the places where the systems break down, and that's what this series does, is it looks at people who are navigating life.

It hears directly from their lived experience about the challenges that they face when they're trying to do basic things in life, like access healthcare, like go to school.

And it's really in understanding where those systems break down, why that doesn't work, that we can learn more about our society.

>> Noel, those were two really.

I think, just outstandingly done.

Beautiful conversations you had for this first episode.

And I you know, I have to say, Stephanie Woodward is someone who I met probably when I started hosting this program.

And you can't be with her for more than five minutes before you realize, I mean, she is a just a brickbat of knowledge and strength and force, and she's going to challenge your assumptions.

And in all the best ways.

And I start with the idea of marriage equality.

Stephanie is the kind of person who would say, oh, marriage equality.

Like, what does that mean?

What does that mean?

That's why we open the program with that this way today.

What does that mean to most people?

Marriage equality and the disability community is saying, cool, what about us?

Yes, that was an awesome conversation.

I mean, I really appreciate you bringing that to us here.

What kind of stood out to you?

>> I mean, when we talked about, for instance, like the risks here with the marriage penalty, including potential for abuse, where if you are in a situation where you have to essentially relinquish, like financial independence or that you have to then become dependent on your partner for things and, you know, things, as was mentioned in the podcast, like, relationships go in so many ways.

And if you're also in a situation with guardianship, for instance, like how much and how unfortunate is unfortunate, it is that folks, when it comes to being able to navigate their own lives, so much of that is determined by other people's perceptions and then how those perceptions also drive policy.

So and and getting to, you know, the heart of it as well.

You know.

>> Your first guest I think really crystallized a point that a well, probably two generations ago in this country would not have been clear to many people, which is that people with disabilities, particularly intellectual or physical disabilities, you know, may want to get married someday, may want to have a family, may want to be in romantic relationships, may want everything that is included in that.

And this society just did not think that way about people with disabilities for a long time.

And frankly, today you may have listeners who go like, boy, that jarred me into thinking a different way here.

>> there.

I mean, one of the things that also stood out to me in, you know, just honored to be a part of this project is looking at the history and seeing that context in this thread of of eugenics, of forced institutionalization, of also criminalization, of engaging in romantic and sexual relationships.

It was criminal in some states.

And it's difficult to process, at the same time that it also strings it together to like here we are, present day and you know, the struggles today are not removed from, you know, past generations either.

>> So let's talk a little bit about process because, you know, as, as the director of podcast strategy, Veronica, part of the goal is to create obviously great podcasts, but also to make sure that the community is going to find them and want to hear them and, and I think you're off to a great start here.

Thank you.

How do you how do you and the team create a six part series?

You go, I can't miss an episode here.

>> Well, I think one of the most important missions of this particular project is that we wanted it to be as accessible as possible to people of all abilities, so we wanted it to be available as an audio only product.

We wanted it to be available on as a visual so you can see it on YouTube.

We're having transcriptions and even ASL interpretations, or in the process of being done.

So that really aligns with the mission of Move to Include is to make it as accessible as possible.

It helps that, like right now at WXXI, we are sort of in a place where we are getting to be better at that.

As we can see from Connections.

Right?

We're on we're on YouTube now.

We're on the radio.

We're on a podcast.

so I think that the time was really right for us to embark on this project.

But I think that, like the podcast medium is really a good a good medium for this because we wanted to talk to people, we wanted to hear from people who were self-advocates.

We wanted to have them tell their own stories.

We wanted to elevate those voices.

And what better way to do that is like an unscripted, unstructured conversation where we can speak directly to folks, where people can speak directly to the community, and we as WXXI and Noelle, helps a lot with this can be a conduit for those conversations and elevate those voices.

So I think that like the timing was right, the format was right.

And I just hope that people can are able to find it.

>> I'm going to read a comment from YouTube, listener and a viewer saying, I appreciate the advocacy.

One thing that bothers me the income work restrictions, i.e.

we can only make x amount before they subtract from your SSI as if versus normies.

We can't save for our future.

you know, a powerful point there.

So someone watching listening today any anything that stirs to mind for you, Noelle?

>> I mean, that's a great point, and I appreciate them sharing that.

It's that's something that came to mind to the the moment that I became aware of the the marriage penalty of like $3,000.

Like what?

Like if people want to go on a honeymoon, for instance, like or even again, to save for your future, even to have enough to cover rent for like so you're not living paycheck to paycheck or, you know.

>> If you think about the cost of a wedding, I mean, even paying for a wedding is going to cost more than $3,000.

Like, you know, being able to pay for catering or any of the vendors.

I mean, once you are, once you get married, is that savings to now be counted against you in your income?

I mean, it's just like it's like, sorry to cut you off.

No, I was just thinking as somebody who, like, had a wedding, I can't, I, I can't imagine saving for it and not being able to have that like that savings and that pool available to me.

>> Yeah.

And that cycle of poverty that also Stephanie mentioned and the risk of losing your health care when it is about sustaining your life.

Yeah.

Yeah.

That's that's heavy.

>> I mean, I was gonna say you've seen the stats from Gen Z and nobody's getting married anymore, but that's a whole other conversation.

>> We're not talking about Gen Z today, Evan.

>> I know.

>> What I do want to say to your point, Noelle, too.

I think that stuff like when I listen back, Stephanie Woodward is so good at sort of capturing the intersectionality of people and explaining, like how those vulnerabilities can really increase exponentially when, like a woman who is in a relationship that has a potential to be vulnerable to abuse, imagine now, like that woman has a disability.

So she's reliant either financially or physically on that person.

And like, what is that reality like?

And how can we set up a system that works better for that person?

>> So episode one is out today.

Episode two is when Noelle.

>> next month, tune in.

>> I believe February 9th.

It should be on the second Monday of the month.

So today is the 12th second Monday of January.

So it'll be February 9th, will be the second episode.

>> And if listeners, members of the audience have ideas they want to share, we all want to hear.

There's different ways to communicate.

How do you want people to get in touch with you if they've got ideas in the future?

Noelle.

>> you can message me directly and Evans at wxxi.org.

Veronica.

Also, I would would be a great person to reach out to as well.

>> Sure.

And I also want to my email is at wxxi.org.

I want to shout out to the Move to Include project manager, Sarah Abbamonte.

She's also been a tremendous resource for this.

We've had like a lot of help from community partners and sponsorships.

And if you do want to learn more about, like the initiative or if you want to find the podcast, the website is Move to Include.

Org, that's sort of where you can find like all of the Move to Include stuff, whether that's the exhited that we talked about, A good life, the move to include podcast, there's resources available, there's live events.

Noelle just did a discussion after a screening at The Little.

So there's like a lot of you can find anything you need that's under this umbrella over there.

>> And a great and well deserved shout out to our colleague Sarah, who couldn't be with us today but is always working on this.

Thanks to both of you.

Thanks for bringing this to us.

We look forward to the next and appreciate you being on the program today, guys.

Thanks very much.

>> Thank you Evan.

It's always good to be here.

>> Veronica Volk and Noelle Evans.

The move to include podcasts.

And let me close the program with just a little bit of a plea for me, for you to think of this.

And don't think of this as a disability podcast, or don't just put everything in boxes.

And if there's not someone with a disability in your life, then maybe this isn't for you.

This is for our entire community, and it's Stephanie Woodward said.

We all need to spend more time getting to know these issues, getting to know each other.

This is a great way to do that.

>> So universal?

>> Yes.

Universal EP1 out today from all of us at Connections.

Thanks for watching.

Thanks for listening.

Thanks for finding us on whatever platforms you are finding us on.

We are back with you tomorrow on member supported public media.

>> This program is a production of WXXI Public Radio.

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Its staff, management or underwriters.

The broadcast is meant for the private use of our audience.

Any rebroadcast or use in another medium without express written consent of WXXI is strictly prohibited.

Connections with Evan Dawson is available as a podcast.

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