Episode 4: Dom Evans

Everything You Know About Disability Is Wrong Podcast

May 18, 2023

Episode 4 Show Notes

In today’s episode, we speak with filmmaker, writer and activist Dom Evans. To begin, Dom shares that he has been in a relationship that is going on 21 years. He shares that he was faced with the “choice” of either getting married or ending up in a nursing home, both options which had negative financial and social consequences. He began to openly discuss that this was an issue of marriage inequality. Disability benefits and healthcare shouldn’t be penalized by the amount of money your partner makes. The choice between either getting married or staying alive (i.e. out of a nursing home) is clear. Even if you are not married but are living with a partner, some states count this as a marriage and revoke the persons’ disability benefits. Many people don’t realize this unjust reality that disabled people have to confront.

Next, our guest highlights the importance of having a strong community around you. There is a huge lack of representation of inter-generational family living situations today. Dom opens up about the things he has witnessed his marginalized friends experience in nursing homes and hospitals. Going into the nursing home is not a joke, but is a very serious thing that we do to our elderly family members. Most people have no idea about the lack of autonomy that happens when we are not in control of where we live. Studies show that for disabled people, going into a nursing home can cut your life as much as 5 years just off the bat. In most instances, people who live in nursing homes witness abuse and are not given the proper amount of care. Unfortunately, many disabled people are forced to stay in abusive relationships just so they don’t end up in a nursing home. That is why it is recommended that your caretaker is not your partner.

Before wrapping up, Dom shares his inspiration behind the work he does on a daily basis. His biggest goal is that the younger generations do not experience the discrimination and societal hurdles that he has for his entire life.

Transcript

Lily Newton:

Hey listeners, thanks for tuning in to another episode of Everything You know About Disability is Wrong. In the upcoming episode, we chat with Dom Evans and have an incredible conversation that does reach some heavy topics. We talk about loss of autonomy, things that happen in nursing home spaces, as well as suicidal ideation and suicidal thoughts in general. If that's not your cup of tea today, take care of yourself, come back to this episode when you can. Thank you for listening. Welcome to Everything You Know About Disability is Wrong.

Erin Hawley:

A podcast by disabled people for disabled people.

Lily Newton:

But if you're not disabled, stick around, you might learn something new. Speaker 1: Oh my goodness, you are such an inspiration. Wow, you really are. You're so strong. Can I pet your service dog? 1, 2, 3, let's go. We are artists, parents, teachers, good guys, bad guys, student's leaders. I'm not your inspiration. Yeah, I'm fully who I am. You've got my own expectations that don't fit into your plans. I'm not your side story, so I wrote it in this song. Everything you know about disability is wrong. Yeah, everything you know, everything you know about disability is wrong.

Erin Hawley:

Welcome everybody to Everything You Know About Disability is Wrong. Today, we have a wonderful guest, Dom Evans, who is a filmmaker, writer and activist, and we're so excited to have you here. Welcome Dom.

Lily Newton:

Hi Dom.

Dom Evans:

Hi. Thank you so much for having me. I hope everybody out listening is having a great day. I hope you're both having a great day as well.

Lily Newton:

Thanks.

Erin Hawley:

Me and Dom have been friends for a very long time, I want to say at least 10 years, right?

Dom Evans:

Probably, I'm guessing we met around 2010, which is 13 years ago, because I'm pretty sure we met through a group, most likely Facebook.

Erin Hawley:

Yes.

Dom Evans:

Neither of us are members of the group, but 13 years later, we have had a very interesting friendship.

Erin Hawley:

For sure. Some ups, some downs, but we eventually found each other again and it's just been great connecting with you.

Dom Evans:

It has. Erin actually used to write for my website, I used to run a website, [inaudible 00:02:51], which was a gaming website. It was a bunch of disabled folks and they would give us free games, we would work for free games. Erin played Nancy Drew games and she would take all our Nancy Drew games off our hands.

Erin Hawley:

Yeah. I'm so fortunate to have you in my life and I feel like I've learned a lot from you as well, especially around marriage equality and your activism around that. Did you want to tell us a bit how you became involved in that and maybe talk about your relationship and how that affects it as well?

Dom Evans:

I've been in a relationship that is going on 21 years, so I was real young when I got together with my current partner. Growing up, I had just been told like everybody else, "You'll get married, you'll have kids." Then I got with my girlfriend and I got on a home care program and they're like, "Yeah, everything she makes, it'll be counted towards you if you get married, so you can either have these lifesaving programs that keep you out of a nursing home, in your own home, or you can marry this person that you've already committed some years with." I was like, "Wait a minute, so my choice is basically staying out of a nursing home or getting married? What kind of choice is that? That's not a choice," because it's really interesting. I always talk about how this problem is cyclical because if I got married then I would get kicked off the services. I would end up in a nursing home. I would be disconnected from my girlfriend. We wouldn't be able to live together, so then I would not be able to be married to her, I'd be able to qualify for the program again. I'd get out, I could marry her again, get kicked off, go back to the nursing home again. That's the problem. I've had to argue with people that this is an issue of marriage equality because it's not so clear cut, but I see it as very much an issue of equality, and it's because of this. I was asked to be a part of this group that wrote legislative briefs and whatnot for Hillary Clinton when she was running for president. One of the things I particularly wrote myself was something on marriage equality. I tapped into it through healthcare and I basically said, "You should not be penalized based on if your partner makes any bit of money. It shouldn't be tied to your healthcare. It shouldn't be tied to your livelihood." What I used for the basis was Justice Kennedy wrote this really great defense of marriage for when gay marriage was being approved. When they pass legislation, a justice always defends and a justice always writes a dissenting opinion. Well, Justice Kennedy wrote the opinion where it was in support of why LGBT people deserve to be married. He said, "Marriage is an alienable right that every human, they deserve that right." That's basically what it said. If you have a program that stands between your right to marry, is that not an issue of equality? Because there is no choice to me, my choice is to stay alive and that means staying out of a nursing home. If my choice is to stay alive or get married, who makes that choice? I'm just going to die.

Sadly, there are people that can kind of skirt by... See, I can't. There are people that can do their care but it's painful and would benefit from home care and they will drag themselves through it to be married, and it will destroy their body, it will cut their relationship short, some people die sooner because of this. Or then, you have the people that are not disabled at all and then they become disabled and then they have to get divorced. All of these scenarios are tied in together. Finding that out, that I would never be able to get married, that really lit a fire under my ass basically because I deserve to show my love like everybody else. I want to party, I like parties. Why don't I get to have a party where I celebrate? That's the thing too. Social security can say, "Well, you're living as married, so we're just going to take everything away anyway."

Erin Hawley:

Yeah, I was going to say, even if you don't get married but you're living together, some states count that as marriage, you still lose your benefits.

Dom Evans:

That's why we have trouble getting people to talk publicly about this because people are scared. I get interview requests a lot for people that are on programs because this affects every program. It affects SSI, Social Security Disability, Medicaid, it can affect Medicare. There's an obscure situation where you can still keep it, like for example, the Social Security Disabled Adult Children, if you marry another person on Social Security Disabled Adult Children, you both can keep it because this is what they say. They say, "If you're on the Disabled Adult Children SSDI program," so you're getting Social Security benefits, which often it also ties in with Medicare, so you get SSDI not through your own work record, but through your parent's record, they basically say, "Well, you're so dependent on your parent, you're basically their responsibility." If your partner is also dependent on their parent, you're both basically such losers that you can stay on the program.

That's what it feels like. You're a loser. Your dad has to take care of you, your mom has to take care of you, you're their burden. If your partner is also their parent's burden, you can both keep your SSDI through the Adult Disabled Children Program. If you marry anybody else, and I don't know about you, but that was not on my dating app. It was not like, "Hello, I'm looking for someone that's on the Adult Disabled Children Program. Do you also long walks on the beach?" No. You just fall in love, that's what it is. If your partner is not on that program, you're done, you lose the SSDI completely. You lose Medicare because Medicare is tied to Social Security disability. However, what's interesting is if you get SSDI through your own account, so say you work many, many years, you've paid into Social Security yourself, go ahead and get married, do whatever you want, they won't touch your money, they won't touch your services. This is only for those of us that are born disabled or who become disabled before we have a distinct work record.

Lily Newton:

There's so much in that. Thank you for sharing everything that you just shared. I think that unfortunately there are so many people who have no idea about this aspect of marriage equality, and there are people who think... I think of the love is love hashtag everywhere. Love is love, yeah, unless you're disabled, unless you have all your choices completely taken from you because you're choosing a non-autonomous life or love, it's really unfair and unjust. I appreciate you being open and talking about this. I hope some of our listeners learn something new in this episode. There's still a lot to fight for.

Dom Evans:

I just posted on social media that one day I'm going to tell the world how disabled people are treated when they are expected to be "taken care of" by the government. People are not going to believe it, but I was like, "I've been telling you for 20 years, and most of you are not listening." Really, people don't listen until they become disabled themselves, and then they come to me and they're like, "Dom, you've been saying this forever." It's like, "Why were you not listening then?" I feel like that's the curse of being disabled, you are never listened to unless you're not disabled.

Lily Newton:

It really shows the way that non-disabled people live this rose-colored glasses life of, "That's just never going to affect me, I'm invincible. That's never going to happen," but disability touches everyone's lives, trust me. I think that just so many people don't realize how, even if they are taking that selfish route of this isn't going to affect me until it affects me, well there's chances it's going to affect you.

Dom Evans:

Oh yeah.

Erin Hawley:

If you don't experience disability, you should still care about it because you should care about other people. This selfish, like you said, attitude, "It doesn't affect me," well yeah, one day it might, but even if it doesn't, you should still care. That's how society is functioning, people caring about each other. You know what I mean?

Lily Newton:

Yeah, that's what humanity should be.

Dom Evans:

We're an interdependent society and that's the thing, why aren't we more community focused? Why are our communities not taking care of each other? I think about, I don't know, even colonization has impacted that, how growing up in a white household that you're expected to do it on your own and be proud of doing it on your own, but then all the people that get left behind, and being one of the people that's left behind basically from birth. That's what we do to disabled people is really marginalize, leave us behind, separate us. As much as they say we're not in the back bedroom anymore, a lot of us are still not included and the fight for inclusion continues. I'm starting to have friends that have passed away from illness from disability, or I'm watching friends get forgotten by other people that they thought would always be there for them because now they're disabled and they're not able to get out as much and they're not... Then coronavirus on top of it, for a lot of us it's not safe to be outside, so we're getting forgotten from that aspect as well.

Lily Newton:

I think you bring up a really good point too about interdependence. I think that one of the things we've seen throughout this pandemic has been what a plague individualism is and feeling like, "Oh, I only need to look out for myself," versus communities should care for one another. Interdependence and communal care is beautiful. I think you bring up a good point with colonization as well. I mean, I grew up in a half white, half Indian household, and stark differences between what is expected in terms of communal care in white American families, it's very different than what I see on my Indian side of the family. I think even on social media and in public spheres where we're finally starting to talk about colonization and capitalism and what these things do, disability doesn't get brought up. Disability is left out of the conversation entirely I think, and that's a real shame because you're absolutely correct that there is that feeling of in the back bedroom, still well alive.

Dom Evans:

Yeah. Also, just the idea of how we treat our families. I grew up in a house where there was intergenerational, but a lot of my peers that were white... I grew up in a predominantly small white town, there were not intergenerational families. I live with my girlfriend and her mom and our son, and people don't understand why my girlfriend's mom lives with us. I think it's a very big thing for a lot of white families that you tuck your elderly away in nursing homes. You know what I mean? I can't imagine our life without my mother-in-law here. She's an active part of our family, and I want my kids to have their grandparents nearby. I practically lived with my grandparents, and that was kind of a disabled response. I find it really interesting that all of my cousins don't have that experience that I had with my grandparents, where my grandparents moved in with us when I had surgery to take care of me, for example. I feel like my grandparents were second parents to me.

I really had an intergenerational experience where if my grandfather would've been closer and needed me, I would've done anything for him. We do that for my girlfriend and her mom gives us as much as we give to her, but I don't see that in a lot of other white families and where I grew up, it was very much, like I said, grandma's in the nursing home. There's a huge joke, and I don't find it funny at all. I have lots of friends and they're like, "Oh, when I go in the nursing home." I'm like, "You have no fucking idea. You have no idea." I'm terrified of nursing homes. I had a friend who is disabled, she is a Black lesbian, she's my best friend. We've been friends, she's like a sister to me. We fought for years because when she was in her late thirties, she was put in a nursing home because of domestic violence, because she left a domestic violence situation.

She's a wheelchair user, she couldn't take care of herself. Her partner basically absconded their apartment. She ended up in a nursing home for years and what she had to deal with, watching it not just as disabled and being young, she was the youngest person there and they constantly partnered her with elderly people that she didn't have anything in common with, that were rude to her. She had to deal with racism. Every day, this old white man would say stuff to her and they were like, "Well, this is his home too. You just have to deal with it." Being a lesbian, it's not safe in nursing homes for LGBT people. I'm trans, I'm terrified, even going to the hospital is not safe for me. Witnessing what she went through as somebody marginalized, I will never joke about the nursing home. It's not a joke to me. It's a very serious thing we do. We lock away old people.

I feel like when people from other generations do it, it's because they don't have family. Out of a lot of the things, it's just they don't have the support, so they're kind of forced into it. But us white people, we knowingly put our family there a lot, and then we joke about joining them.

Lily Newton:

Yeah, and I think that it's also such a solution. I'm putting up air quotes because it's not a solution at all, but that people who can kind of disconnect and feel like, "Oh, well, there's nursing homes, there's places for people who need support," that's fine. People just don't have any idea of the lack of autonomy and the bullshit that goes on when people don't get to live the way they want to live.

Dom Evans:

Yeah. Nursing homes are where we send people to die. Statistics show that for disabled people, like Erin and I, it can cut your life as much as five years just off the bat. If you make it five years in a nursing home, they're like, "Yeah, good luck." We got my friend out after four. It's like, "Thank goodness." But what do you do if you need care? That's also the thing too. The nursing homes get such big monetary kickbacks that we're constantly fighting the government to explain to them that home and community-based services are valued by a lot of us and that a lot of us do prefer to stay in our home. For some, they do like the structure that a nursing home provides. I do know a couple of people that are closer to my age that... What were they dealing with? They were dealing with not having care that was reliable. They just happened to be in a better place where their care's not that bad, so they can kind of look past the other stuff.

But in most instances, there's a lot of abuse, there's too many workers and not enough time to do the care. You get people that end up, for example, my friend, her dinner was at 4:00 PM at night and then she was expected to go to bed by nine or 10. You know what I mean? It's like they warehouse you so you have to follow all their rules.

Erin Hawley:

Nursing homes take away, I feel like, the person, the person's personhood, their autonomy, their ability to make their own decisions about when to go to bed. I'm terrified of it as well because I live at home with my parents and they're getting older, they're having difficulties even now doing my care, and when they eventually can't do it anymore, where does that leave me? That's really scary. Even if we're telling disabled people that they can't marry, that's also saying you can't have that care outside of your parents or every family. It's really, really messed up.

Dom Evans:

Oh, yeah. I think that I got lucky in that I ended up with my girlfriend when I was younger because I was able to kind of have her assume that role, but there's problems with that as well. What if we had broken up? Right now she's chronically disabled, so how long will she be able to do my care? It's ridiculous, but it's true. I'm constantly trying to become a millionaire at the work I do because then I don't have to worry about it and then I can help other people. You know what I mean? Because I don't want anybody to have to worry about this. This is the worst place to be, just kind of hoping you don't end up in a bad situation or being one emergency away from a bad situation.

Erin Hawley:

I want to go back a sec when we talked about relationships and care. A lot of disabled people are forced to stay in abusive relationships because that's the only way they have care to stay out of an institution.

Dom Evans:

Oh yeah, and that's why there is this recommendation that your partner not do your care. In my situation, it worked out for the best. My body's weird, so my partner kind of knows my care and she does it better than other people. That's kind of why she started was... It wasn't that I didn't have care at the time, it's that it was inadequate. She was like, "Well, I love you, so I'm just going to do it better." You know what I mean? Why not have the better care? We always said eventually we're working towards finding me more care that we can pay to be better, but it's like this is 20 years we've been fighting to get economically solvent to where she doesn't have to do my care and it's still a fight where we don't know when that day is coming. We hope it's coming because of the work I do, but there's no guarantees in anything.

Lily Newton:

Absolutely. That kind of pulls us back to talking about... I'm just thinking of you saying that, "She loves me. She's going to take better care," there's that level right back at how community is so important and a lack of community is scary, you don't have people to lean on. In our work with Easter Seals, we often talk about that community is a social determinant of health. Having people you can depend on is crucial in a world where your other option is care that you can't depend on and care that might not be tailored for you, and it's proof of just how important home and community-based services are in general and in tandem with just community is super important.

Erin Hawley:

Yes.

Dom Evans:

I like that you brought up Easterseals because that kind of reminds me, Easter Seals has... At least from my viewpoint and my interactions with Easter Seals, it kind of embodies this idea of what I'm talking about, because when I was a kid, I'm a CODA, my dad was deaf and we were poor when I was being diagnosed, he had just lost his job as a tool and die maker, and he went back to college and became an accountant for the state of Ohio. But because he was deaf, we never had enough money, and because of my disability needs, we never had enough money. Easter Steels would step in and they would pay for the shoes I had to wear for my feet, they would pay for my dad's hearing aids, and they would provide that kind of community support where I was involved with [inaudible 00:27:43] and I felt... Today I talk about how exploited I was by them, whereas I felt like Easter Seals, at least my experience, I don't know about anybody else's, but my experience with them was that we needed something and they were there.

I remember going to their Christmas parties and they were like, "You're one of us. We are here for you." I remember going with my dad and the rest of my family wouldn't go with us, and I was like, "What would that community support look like if it were tangible, if we had communities where we shared care?" Even if it wasn't your family member, they were a member of your family, like your community family, so when somebody needed the load lightened, there was someone there to help pick you up and then you return the favor. We all have skills. We can all contribute something. Thank you to Easter Seals of Toledo, Ohio because they were very helpful to me and my family when we were younger.

Lily Newton:

I can't tell you how happy that makes me to hear because you do hear about organizations that are set up to help disability that end up not doing the same. Easter Seals is the first place I've ever been openly autistic at work, I'm very high masking and I have always hidden it. I didn't find out I was autistic until I was in my twenties. But in finding out though, I just continued to mask. Then, at Easter Seals on this team, I am so openly autistic. Sometimes I'll send my team, which Erin is on, a message in the morning that's just like, "The 'Tism is strong today, everyone beware." It's so beautiful to get to just be fully myself. I am so grateful that you had good experiences with Easter Seals. I love getting to work for a place that has great, real testimonials like that. I'll say with that, this is also a perfect segue, I think we should go to break so that our listeners can hear about what Easterseals does.

This is a podcast brought to you by Easter Seals.

Erin Hawley:

We actually work for Easterseals, but maybe our listeners don't know what we do.

Lily Newton:

That's true. Easter Seals is leading the way to full access, equity, and inclusion for disabled people and their families.

Erin Hawley:

Did you know we've been doing this for more than a century?

Lily Newton:

This includes helping disabled people find meaningful employment and addressing healthcare needs for all ages.

Erin Hawley:

We're proud to serve communities across the country, and ready for the next 100 years. For more, check out easterseals.com.

Lily Newton:

We're back. Dom, I was... Obviously, I knew you and Erin going into this were friends, and I was like, "Oh, I'm going to be the autistic one on this call that's not part of this friend group. What am I going to...?" I'm doing my research, learning about all the cool work you've done, which there's a lot. You're so cool. I'm really excited to be talking to you.

Dom Evans:

There's a lot, because I'm one of you, I'm neurologically diverse. I have ADHD, so I am a lot and there is a lot. I mean, that's where you fit in. It's the neurodivergent connection, right?

Lily Newton:

Absolutely. It makes even more sense with where I'm about to go. I was reading on your website, the dominicevans.com. I'm on the activism page, and you have a part that just really stuck out to me. I really wanted to, in the spirit of Everything You Know About Disability is Wrong, speak about because I think it doesn't get talked about a lot. I'm just going to read directly from this, and then I have some comments. But on your website it says, "At six, Dominic talked about killing himself and wishing himself dead due to the excessive amounts of bullying. And at 19, he attempted to try to kill himself. Unsuccessfully and frightened by the lack of all emotion or feeling he had when trying to harm himself, Dominic knew he had to do something if he wanted to survive into adulthood. Taking that anger, pain, and hurt, Dominic started making friends and connections in the disability and LGBTQIA communities, building up an arsenal of friends in activism from all over the world."

I cannot tell you, Dominic, how much that struck me. I just relate to it so wholeheartedly. Some of my earliest memories are grasping the fact that I could kill myself, and suicidal ideation was a big part of my youth and teenage years. I spent so long just trying to figure out what I had to change about myself to not feel that way anymore. Then in these last few years where I've been openly a queer, autistic woman, the thoughts have just lessened. I love the use of the word arsenal there because when you are divergent or horrifically bullied or something that creates you to have violent thoughts against yourself, you have to create weapons of love and community and care. Just that arsenal of friends in the disability community and the LGBT community, it's so, so important because I have found that in communities where people are being themselves, it's just a better place to be.

I'm not saying that either community is perfect and there's absolute intersectionality there that should be discussed, but I just was really struck by that. I really hope that if there's anyone listening that has not allowed themselves to find home in the communities that they're in, I really encourage you too, because it's life changing to be around people like you, and even just get to have conversations like this, it's so validating. I'm 25 and new to the disability world and I just feel so honored and lucky to get to meet people like you who have been doing this work for so long and have built that arsenal to combat the world we're born into.

Dom Evans:

This is why I do it, because for me, when I decided to really fight, it was not just for me, it was because I didn't want your generation to go through what I did. To hear you say, "That was my story too, but I feel empowered by reading this," that's just the validation I need. I don't do this for the accolades, I don't do this for the non-disabled people. I do sometimes do it for the money, but I mean it's because I'm trying to not be in a nursing home. I hope we understand that. But I really, really do this because I don't want the next generation to grow up and feel that way. I was suicidal when I was five once I learned I was different, and I remember it very distinctly what that was and why I felt that way. I grew up in a small town, around 5,000 people, very white, very Christian oriented, you were either Catholic or Methodist or born again, those were your options. If you weren't a part of that, you didn't fit in. You know what I mean?

I was mostly Catholic, it's complicated, not anymore. But that was really tied to our public school identities to that religious thing. I was not into that, because I didn't realize I was queer until I was 16, but I think I always knew somehow I was different beyond disabled. Even to other disabled people, I was different. I kind of think I was always queer-minded, so I never really fit in. I walked with a limp. I wasn't even a wheelchair user at the time. I was adorable as fuck, but I had a limp, and so that's all kids saw. They would quack at me and they called me duck, so I hated ducks for a really long time. Then, I got cast as the duck in the school play as a kindergartner, and I sobbed.

My mom was like, "Well, you just have to be the duck." I remember they put this horrible glue on my face for my beak. It was not just even bad enough to be this little duck, and I had to waddle around and say, "Quack, quack." It was just humiliating, and to have kids do this to me every day. I was in kindergarten and these were fifth and sixth graders bullying me. They were not even my age, they were older kids. I would walk down the hallway with my class and they would quack at me because they would have lunch and they would just make fun of me. I remember telling my mom, I would say, "I just don't want to be alive anymore. I just don't want to deal with this," and they took me out of school. I had to actually have mental health days because they would have to remind me that life was worth living, at five. I don't ever remember a time where I wasn't suicidal before the age of my early twenties. I'm not suicidal anymore, really being older, I want to live. I've always wanted to live. That's the thing. I wanted to live, but I wanted and needed someone to tell me that they wanted me to live, and there was nobody telling me that. There was nobody saying, "We want you to live because your life is valuable in this world." All the messages were, "You just deserve to go. You're not valuable, you can't contribute." All my gifts too, I was really talented at singing and acting, I was good at school, but it was always like, "You're not good enough even for... You're a disabled girl, so you're never good enough."

I would constantly try to be better at everything. I tried to be the best behaved. Then being neurodivergent, I was masking all the time to try and be better so then I would have meltdowns at home. My mom has mental health issues, and so she was abusive about that. She would abuse me. She would try to live vicariously through me. That created all kinds of problems as well. I didn't feel like I had any safe place really until I saved myself, and going to college saved my life, it did. I don't know how much longer I would've lived if I hadn't have gotten out of my house and really out of that community where I was so devalued. Even today, I'll do things that are great and they'll just pretend like, "Oh yeah, we like that. That's so great for you, Dom," but it's like they still don't value me as a whole human being.

Lily Newton:

I have chills on my body because just what you said about why you do the work and the generational difference and things changing. I feel like we were meant to have this conversation in life because... What should have been the first sign of my neurodivergence that we didn't really necessarily catch, I had a lot of ticks growing up. The number one was that I would move my neck back and forth, and people at school made fun of me and called me a chicken. To this day it's been like, because I'd cluck my head like a chicken, and to this day it's like a wound that now I'm like, "We're the chicken and the duck, we're cool." This is community. We're the chicken and the duck, and we moved past that.

I will say that while I still went through that and I remember the day that I found out people were saying that, that was one of the worst days of my life, but also was the thing that led me to start seeing doctors about figuring out what's going on with me and led me ultimately to this moment where I'm here getting to have beautiful community conversation, and because of growing up with the internet, I was able to figure out what was going on and get support I need.

Dom Evans:

We are fair feathered friends.

Erin Hawley:

I love it.

Dom Evans:

The internet is another great segue because that's really how I did a lot of my dating. I started having friends that were on the internet. When I was in high school, my first internet friends were... I went to my first internet gathering at Niagara Falls. I had to get my parents to go with me and everything, which was a little awkward. It was just revolutionary then for dating because we had not gotten to the point where video and picture dating was really big, so you could just talk to people and they would get to know you. I had lots of people I dated because they would just talk to me and they would find out the person I was.

Lily Newton:

Yeah. It's interesting the way that the internet has evolved so much to, hearing you say this, where the internet was a place to get to share what parts of you you wanted to first before what would come in person. I find that the internet is the space where, for me at least, I'm most myself, most openly... It's where you get to have a bio that says, "Autistic," and I put my little pride flag and I put my little India flag, it's that moment of this is who I am. I think on either side of that pendulum swing, the internet has been a haven for disabled people and just... I mean, not that there's not trolls and terrible things going on the internet, but just that takes us back to where we were at the beginning of this conversation, community. We live in such a country that's car dependent and hard to get around, and having a virtual community is cool. It's really cool.

Erin Hawley:

Yeah, especially during the ongoing pandemic. I think even non-disabled people I think now understand better the power of the internet because they're basically forced to be disabled by not leaving their house. We're running out of time. Thank you so much, Dom. You're amazing. I love you. Thank you for being here. Thank you to Lily for being awesome as well. I love you too, Lily.

Lily Newton:

I love you too, Erin. Thank you.

Dom Evans:

I love you both. I'm just meeting Lily, but I already love you because I can [inaudible 00:43:24].

Lily Newton:

Yeah, I love you so much.

Dom Evans:

I love Erin for being amazing, and we have to play games. Lily, do you play games too?

Lily Newton:

Well, Easterseals has a new initiative, ES Gaming, and it's literally a virtual space for disabled gamers to hang and get to know one another, and Erin's bringing me on board. I just got set up yesterday and I'm going to become a gamer. I'm going to do it.

Dom Evans:

I love it.

Lily Newton:

Now I'm saying it on the podcast, it must happen. I will become a gamer.

Dom Evans:

Yes. Let me know what you're playing, I am a big gamer. I play with a modified controller and I love it.

Lily Newton:

This has been so wonderful. Thank you so much for coming on our podcast. Erin, as always, thank you for connecting me to cool people. To our listeners, thanks for tuning in to another episode of Everything You know about Disability is Wrong. Now it's time for the Ask Us Anything where you ask us anything. Today, Erin, our Ask Us Anything is where would you never go on a first date?

Erin Hawley:

I would never go to the movies because you literally sit there in silence next to a person you don't know for two and a half hours. That's not a way to build a relationship. It just doesn't work for me.

Lily Newton:

That's a good point.

Erin Hawley:

How about you?

Lily Newton:

To me, as someone who's kind of socially awkward, I'm like, "Maybe that'd be a great first date," but for me, I would never do an escape room because I know I'd get too into the puzzles and stuff/I'd just be panicking. This is not me. I'm just not... Listen, I'm not an escape room girly. I want to be, but I'm not. That's the Ask Us Anything. If you want to ask us anything, you can email us @everythingyouknow@easterseals.com.

Erin Hawley:

Thanks for listening to our podcast.

Lily Newton:

If you liked what you heard, be sure to write a review, like, and subscribe wherever you get your podcasts.

Erin Hawley:

Join us next time and we'll discuss more reasons why Everything You Know About Disability is Wrong.