In this podcast we cover disabledwriters.com and the journey of S.E. Smith in writing, disability advocacy, and helping others. Disabled Writers is a resource to help editors connect with disabled writers and journalists, and journalists connect with disabled sources.
S.E. Smith: 00:00 … for people who grew up in low-income settings, that a number of studies have shown, we tend to be more generous with what we have than wealthier people because we know what it means to have nothing, and we know what it means to need something. I kind of very much grew up with this ingrained attitude that when I have an advantage I should share it. When I have a thing, I should share it. And that I should try to make other people's lives better through my work and that if I'm not doing that or if I am profiting at the expense of other people, I should be questioning what I'm doing with my life.
Gavin: 00:34 What Origin: from muse to manifestation, exploring why and how people create things. In this episode, I’ll be featuring S.E. Smith, an accomplished writer, and someone who runs disabledwriters.com. You can find more at disabledwriters.com and realsesmith.com. S.E. Smith is also on Twitter @sesmith. If you’d like to find out more about our podcast, visit whatorigin.com, and join the conversation on Facebook: facebook.com/whatorigin. So without further ado, let’s jump into the interview.
Gavin: 01:18 So I am here with S.E. Smith who is with disabledwriters.com. Can you tell me why you started it, why you thought it was important to have a community and for folks to connect with editors and disabled writers?
S.E. Smith: 01:38 Yeah. I started Disabled Writers in 2017 with Vilissa Thompson and Alice Wong as co-partners and that was around the time that Republicans were mounting a series of escalating attacks on the Affordable Care Act. We noticed that there was a lot of coverage of this issue that didn't really include disabled perspectives at all. It was non-disabled journalists writing it. It was not bringing up the concerns of our community and then when ADAPT started protesting, you heard all these headlines like "Even disabled people are upset about what's happening with the ACA." And it was sort of like, "Well, yeah, of course we're upset. Our lives are on the line here." We've been talking back and forth over the last few years about this tendency for coverage of disability journalism to be by non-disabled people, pretty clearly for non-disabled people, and we wanted to push back on that a bit.
S.E. Smith: 02:41 The biggest thing that we kept hearing from editors was, "Well, I just couldn't find any writers who were qualified, or I couldn't find any subject matter experts who were disabled." So we were like, "Alright, fine. We will put up a database, and this will be the resource that you can use so you can't complain about how it was impossible to locate anyone with the necessary lived experience or technical skills or qualifications."
Gavin: 03:09 Do they always cover disabled matters or what do you find? Just the experience that a disabled writer might have that they can go more in depth to a broader array of topics. Not just about their personal story.
S.E. Smith: 03:23 Yeah, a big part of our goal with the database was one, yes, to have actual disabled people reporting on issues of relevance to the disability community. But also to make editors aware of the fact that writers who are disabled can cover things that have nothing to do with disability, and certainly some of the more high profile disabled journalist working today, like Serge Kovaleski, don't really cover disability at all because it's not a subject that they're interested in. And we also really wanted to make it clear that disabled people can be subject matter experts, not just people with lived experience that you can interview about what it's like to be on Medicaid or how it feels to have surgery, but that disabled people are researchers, and attorneys, and scientists, and doctors, and people with a huge breadth of knowledge to draw upon even when it has nothing to do with disability. Trying to get at the fact that if your newsroom diversity is focused solely on, "Oh, we need disabled people to cover disabled things," you're missing out on fantastic disabled writers who are covering things that are not about disability.
Gavin: 04:31 I see a number of people obviously have sometimes similar conditions or they can relate to each other. Have you found that it started a community between each other to talk and to support each other? And do you have that kind of connection with the writers?
S.E. Smith: 04:46 I think more what happened there was that the disability community is extremely active online. As you probably know, if you're familiar with Alice Wong's work, she's done lot of organizing around #CripTheVote and a lot of other kind of twitter hashtags and social media groups. And so what sort of happens is everyone in the chronic fatigue syndrome community will suddenly stumble upon us. And so I'll get 20 profiles from people in that community, or people in the EDS community that are talking about bad media coverage and someone says, "Oh, do you know about Disabled Writers?" So we sort of get these little clusters of various disability communities online. We do have a Slack where people can chat and interact but has been a little bit moribund of late; in part I haven't had as much a free time to get in there and moderate and lead conversations in there. So we've sort of become more of a gathering point for information than a community at times.
Gavin: 05:43 Yeah, it looks like you have a lot of people. I mean I don't know how many total. Probably over 100 here. Do you know right now how many writers you have that are willing to put out the fact that they have a disability and are listed on your site?
S.E. Smith: 06:00 We have ... pull up my list here. It looks like right now we have 156 people who are live on the site, and we have some people who've had to withdraw, in some cases because they got jobs, which is very exciting. And in other cases, one person had family members who Googled them and they hadn't quite realized that being on the site would mean exposing them to unwanted attention from their family. And then we have some folks who just dropped off the radar. And one of the things that I do is I follow up with writers every three to four months to make sure they're still listed and then asking them if they want to update anything about their profiles because speaking as someone who works in editorial, it's always super frustrating for me when I reach out to a writer and get a bounce back or just never hear from them. So I want to make sure that there's a high probability that you will get a response if you email someone on the site.
Gavin: 07:01 Do you find that it is hard? It's hard for people to just be like, "I'm going to put a label on myself; I'm going to say like ..." I'm going to pick a random person here so I'm not... This person, they have a number of things but they are a wheelchair user. I will just say that so that I'm not picking anyone out. But that's an obvious thing. But do you find that some people really don't want to say like PTSD or mental health?
S.E. Smith: 07:31 I think for disabled writers, that's a little bit of a self-selecting pool in the sense that most people find the site because they are looking for kind of community and they have embraced the disability parts of their identities. I will say I don't police any members of the database. I don't ask for proof that someone is disabled or say that you're not disabled enough because I think that's nonsense, but we definitely have a few people who have provided very limited details about their disabilities, which I think is fine. I think that especially in this political climate with the disabled community getting much more active, particularly online, there's a growing sense of disability pride and of being excited about identifying as a member of the community and of banding together. And almost because the levels of ableism that we're encountering right now are so pointed and horrific, it's almost become a survival tactic to be aggressive about how we identify to find your people. But it's something that I definitely warn people about, especially younger people who don't have as much experience, to say, "Look, once this information is out here, it's out here, and I can delete an article, but I can't clear the Google cache. It is there forever."
Gavin: 08:47 I noticed that a number of the people in that disability writer pool have depression or mental health issues. Do you find that it just kind of comes along with disabilities? That people don't get jobs and they don't get writing opportunities and it just builds? But if they do, if you help them get those connections, it improves? Or do you feel that there's a common theme of depression or shame maybe around people with disabilities?
S.E. Smith: 09:19 That is a really interesting question. I think statistically speaking about 20% of the population overall has mental health issues at some point over the course of any given year, and 25% of the population is disabled. So obviously there's a lot of overlap there, and I think depression and anxiety in particular are two very common mental health conditions. As you say, I think there's a lot of comorbidity there where people who are dealing with situational depression, it can be very intense if you are struggling to find work or you're fighting with the medical system.
S.E. Smith: 09:59 Disabled people are much more vulnerable to trauma. They're much more likely to be victims of sexual harassment and assault, and experience disablist abuse. So it sort of sets you up for mental health sequelae, as it were. I don't know if we have a large percentage of people with mental health conditions, again, because of self selection. I do know that a lot of disabled people who are active online are mentally ill, I think in part because the internet provides such a great way to interact with people on your own terms, so you can find your community, but you can withdraw a little more easily than you can in meet space, as it were.
S.E. Smith: 10:38 I think that certainly finding work and making changes to your life can help manage mental health conditions. But I definitely wouldn't want to say like, "Oh yes, you'll get a job and you'll feel much better. And won't be depressed anymore." There's often a lot at work there, but it definitely is something that I try to be aware of when mentoring writers, that kind of thinking through how things like depression may interact with the way that they work, whether it's things taking longer than you think they should, or feeling overwhelmed by editorial feedback, or having a day where you really needed to go track down some sources and you were just exhausted and couldn't think.
Gavin: 11:19 Do you enjoy mentoring?
S.E. Smith: 11:20 I do. A big part of my practice and kind of larger work, not just with disabled writers but in general, is not just mentoring but actively sponsoring writers because I want to create opportunities for people and I want to help them thrive because I think that benefits them, obviously, but also our community as a whole and also the media as a whole. When you are sponsoring writers who might not otherwise make their way up because they didn't go to J-school or they don't have other privileges that would allow them to skip the lower rungs of the ladder, as it were. To me it is really rewarding to see writers thriving, and sometimes they are not necessarily aware that I played a role, and that is honestly how I like it, when I know that editors are reaching out to people that I recommend and making connections that way.
Gavin: 12:14 Yeah, I noticed on your site realsesmith.com in clips you have, there at least, written for a number of larger publishers, I suppose. How did you go about with your own disability pushing through and getting to the point where you were accepted?
S.E. Smith: 12:34 I was commenting to someone about this the other day that some of it is just sheer grinding and sending out. I probably sent out thousands of pitches over my lifetime and I've written I'm sure millions of words at this point, possibly even into the billions. Feels like that. And some of it has to do with being the right person doing the right thing at the right time or a particular editor spotting you. So I was very fortunate early in my career to be in contact with Jessica Reed at the Guardian, who me about writing an opinion piece for Comment is free, and so getting that big platform exposed more editors to me and then I had other editors reaching out, and so it was somewhat fortuitous and somewhat work. It was a mix of both.
S.E. Smith: 13:14 I really hate it when people say, "Oh, if you just try really hard and bootstrap it, you'll make it." Because I see lots of great writers who should be getting more recognition and aren't, simply because they're ahead of the curve with the way that they're thinking and writing about an issue, or they haven't quite made the right in with the right editor. So there's definitely no easy or straightforward path to success in media, unfortunately.
Gavin: 13:48 Yeah, I know. I mean, it's hard to put yourself out there, but I know a number of people right now in various fields hustling, and events, or a random connection, or this or that can change everything. Right place, right time, right thing, but also grinding, like you said.
S.E. Smith: 14:04 That was definitely something I really tried to do with our fellowships last year, which I'd like to restart this year. Giving people that lift up by working with a couple of publications, too. Thanks to the Awesome Foundation, we were able to sponsor fellowships so that publications who might be reluctant to take a risk on a newer, less experienced writer could be a little bit more confident about that. And so we had fellows at the Daily Dot and Rewire.News who produced a couple of pieces in collaboration with editors there and we ended up with those publications because I had connections with people in editorial in both cases. So it was an example of trying to use my networks to the power of good.
Gavin: 14:45 What do you think started this feeling? I know you said it started in 2017, but I've talked to a number of people that are in charitable work or just helping. Is it part of your soul or being that you want to help others, you want to take time to do that, or maybe you grew up in a way that you always felt like you wanted to help other people? Where did that come from?
S.E. Smith: 15:10 I mean, I grew up in poverty and one of the interesting things about looking back on my childhood is people hear things about it and think ... say things like, "Oh, that sounds horrendous. How awful." And for me it was just normal. That's what childhood was to me, and I think in a lot of ways I had a really great childhood, and one of the reasons why was that my father did a really good job of making do with what we had, but also of making sure that we shared what we had. And I think this is a very common thing for people who grew up in low-income settings, that a number of studies have shown, we tend to be more generous with what we have than wealthier people because we know what it means to have nothing, and we know what it means to need something.
S.E. Smith: 15:50 I kind of very much grew up with this ingrained attitude that when I have an advantage I should share it. When I have a thing, I should share it. And that I should try to make other people's lives better through my work and that if I'm not doing that or if I am profiting at the expense of other people, I should be questioning what I'm doing with my life. So I have certainly spent most of my life doing volunteer work for a lot of organizations, and trying to find ways to give back to my various communities in a lot of different ways, whether it's working on the sexual assault hotline, or socializing cats at the humane society, or trying to uplift writers who I think deserve more attention. I just feel like it's very difficult to be selfish when I've spent most of my life experiencing pretty severe deprivation and seeing other people having that experience and knowing that I have the ability to do something about it, kind of creates a sense of moral obligation.
Gavin: 16:50 Right. I find a lot of times, it's like the whole story of the guy that, there's a burning building and he runs in and saves a kid and then all the people want to call him a hero and interview him and say, "Wow." He's like, "I just did what I was supposed to do." It sounds like it's an extension of yourself. Like you don't need someone to come along and say, "Thanks for doing that." I have to ask for myself, which I don't, I'm not very political. I have my own health issues. What should I be watching in terms ... It seems like some of your pieces talk a lot about politics. You mentioned a number of things coming up, starting the organization. So like right now, what should I be paying attention to? Are there certain people running, people that might run for office or people that have gotten in that care about disabilities? Are there laws on the books that may change that I should care about?
S.E. Smith: 17:46 This administration is a bit of a firehose, yes. I think there are a couple of interesting legislative things that are happening right now. One is the Raise the Wage Act, which was just introduced and is going to lift the federal minimum wage to $15 via a stepped wage, which is really great and exciting. But the very cool thing about it is that it's eliminating sub-minimum wage for disabled workers because, historically, organizations have been able to apply for an exemption to the minimum wage to pay disabled people. Sometimes pennies on the dollar. And so this would be really transformative for disabled workers, and it's something to be excited about. A good thing coming out of Congress feels sort of novel right now. So that is in the House right now, and we'll hopefully see some movement on that soon.
S.E. Smith: 18:41 Kind of on the not-so-great side, we have, the USDA is attempting to ... Basically, the USDA is trying to kick almost 800,000 people off of SNAP via work requirements. So the long and technical version is a little complicated, but the Supplemental Nutrition Assistance Program has had a work requirements component since it was developed in 1996. But states historically were allowed to apply for waivers to cover specific areas. You could say, people in this extremely low-income zip code should not be required to submit proof of work activity. And they tried to get work requirements into the farm bill; that failed. So now they're trying to do an end run on Congress, and this would apply to what they call able-bodied adults without dependents. But that's going to inevitably really hurt our community because there are plenty of disabled people who won't necessarily qualify as disabled for the purpose of this regulation, and also disabled people are more likely to be caring for family members who may not be dependents and have other obligations that make it really difficult to meet work requirements.
S.E. Smith: 19:57 That is open for comment on the Federal Register right now, and handsoffsnap.org has some resources on that. There are also a number of states that are trying to enact work requirements for Medicaid, which is a similar problematic issue. And we're seeing this larger thing around discussions about Medicaid expansions. Utah voters just voted to approve a Medicaid expansion, and now lawmakers are trying to roll it back because they are bad and should feel bad. There's a lot of shuffling around of regulations happening that people don't always necessarily think of as applying to the disability community, but will have a really big impact. One of the areas that I'm particularly interested in this year is taking a look at disability and emergency preparedness.
S.E. Smith: 20:45 We had a lot of horrific natural disasters last year, including several in my home state of California, and one of the things that kept coming up was how vulnerable disabled people are. It's harder to evacuate us. It's harder for us to get the services and supports we need when we have been evacuated. We are in flood-prone areas. We are more likely to live on the ground floor, so our houses are more likely to flood.
S.E. Smith: 21:10 There's sort of this long list of things that is just not being dealt with. And I feel like emergency preparedness should be a pretty bipartisan issue. Like we don't want people dying in fires. And so I'm hoping that we can see some movement on this with what's called the Ready Act, which is, hopefully, fingers crossed, rolling out pretty soon here. And I will say, if you feel overwhelmed by the political climate, you are not alone, and following #CripTheVote on Twitter can be a really great way to keep up with big picture stuff that's happening without feeling overwhelmed. That also does include a look at what various candidates are saying about disability. So they're nonpartisan and they won't explicitly endorse candidates.
Gavin: 21:50 Did you say "crip" like "cripple"?
S.E. Smith: 21:52 Yeah.
Gavin: 21:53 That's cool, I like that. I like that.
S.E. Smith: 21:55 It is a delightful initiative. I love Alice Wong, who is one of the spearheaders there, so much. And just getting tapped into the disability community on Twitter in general, people are always talking about political issues in ways that I think highlight things people haven't been thinking about. The sort of straw debate that erupted in 2018 was a great example where you had everybody getting on board with, "Let's ban straws. Single-use plastic is bad. It's harmful for wildlife." And disabled people were going, "Hey, wait a minute here. There are some things you are not considering." And it felt like we really started to move the debate, and I was seeing people citing our work in city council meetings all over the country, with people getting up and saying, "I thought the straw ban was a good idea. But then I read this piece by Alice Wong in Eater, and I started reconsidering, is there a better way to do this."
S.E. Smith: 22:48 And so I think it's a really great example of both how you can keep up with this firehose of information, but also how you can pull things out that are actionable. So if you're feeling powerless and frustrated and not sure what to do about what, after our call you, could go dial up the Federal Register and comment about SNAP.
Gavin: 23:08 What would you say to people that aren't disabled? How can they be more in tune with the conversation, or what might help them to understand if they just ... Nobody has a perfect life, but if they're just going through the motions and they're not disabled, what do you think the message is if the community could give one?
S.E. Smith: 23:26 I think the big thing probably is just to listen to us. We are out there talking across all kinds of mediums. We're making podcasts, we're writing books, we're writing articles, we're appearing in the media. And I think especially when it comes to conversations about disability issues, take a minute to look around the virtual room or the physical room and say, "Who is leading this conversation and who is participating in it?" Is this disabled people talking about this issue, or is it non-disabled people? Is it parents of disabled children speaking for them, or is it disabled people who grew up disabled and have that experience to draw upon? Because I think a lot of the social attitudes about disability come from a place of lack of knowledge or confusion, and it's not so much, "oh, I hate disabled people" or "being disabled has to be the worst," but it's just that people have no frame of reference, so they don't understand us.
S.E. Smith: 24:30 And so, opening yourself up to listening to us and engaging with us may demystify some of the things that seem strange or difficult to relate to, whether that's a conversation about straws, or discussing why we get so frustrated with seeing non-disabled actors cast in disabled roles, or talking about why we're concerned about policy that seems beneficial but actually has hidden costs that people haven't considered. It all just comes back to a saying that was developed by the disability rights movement in Eastern Europe: "There's nothing about us without us." So, if disability issues are coming up for conversation, make sure that we're the ones leading that conversation.
Gavin: 25:23 In terms of people that don't have time or they want to be charitable, maybe get involved with disability issues or back initiatives, how would you advise maybe some ways to start either giving money or getting involved?
S.E. Smith: 25:42 I mean, I would say the big thing that I tell people when they ask me about charitable donations is to try to keep your money local if possible. Because big name charities do amazing work; they also get a ton of money, and a lot of it comes from foundations in this big, endlessly swilling slush pool of money. And so your dollars can really have more of an impact locally, whether you're donating to the food bank, or your local cancer resource center, or the organization that works with sexual assault survivors. And that can be a way in to taking a look at what kinds of services the organizations provide for the disability community. So some are disability specific, like we have an organization that is local to me that helps place people with aides to help them with tasks of daily living and other activities.
S.E. Smith: 26:32 But it's a good chance to go to the domestic violence shelter and say, "Hey, how accessible is this place? If you get a wheelchair user who needs services, how do you handle that? If you have someone deaf who contacts the hotline, do you have an interpreter on call? Or how does that work?" Giving locally and engaging locally can be a really great place to start with making a meaningful difference in your community.
S.E. Smith: 27:01 And the other thing that I tell people, that is somewhat less popular probably, is to get involved in local government as well. Whether you're picking going to city council meetings, or going to the planning commission meetings, or whatever agency or governmental body, just make it your thing and go and keep track of what's happening in your community and use that as an opportunity for advocacy. Because people are sometimes surprised by the amount of work that you can do locally to make a really meaningful impact on people's lives, which might be something like commenting at a city council meeting about outdated language that's used in a document and asking if it can be updated, which I did recently. Or attending police commission meetings and saying, "Hey, can you update your use of force? It's really outdated and poses serious risks to deaf and hard of hearing people who may not be able to hear and respond to commands from officers."
S.E. Smith: 28:02 So it's kind of, I think a little bit less sexy in a sense because you have to keep going to every meeting over weeks and weeks and weeks, and months and months and months. And there's not necessarily a concrete sort of product or thing you can point out, but it will really make a huge impact in your community. I always tell people that decisions are made by the people who show up, and on a local level, that's sometimes a surprisingly small amount of people. Like, I had been at a city council meeting where there are three people in the audience and because I got up and said something, a proposal went in a completely different direction.
S.E. Smith: 28:40 That is a tremendous amount of power, and I think people really underutilize it because they focus so much on what's happening on the federal level. But it's like you, too, can get stop signs put up on corners. Disabledwriters.com is our website, where you can find a both writers and sources. I am S.E. Smith. I'm also at @sesmith on twitter or at realsemith.com are two good places to start looking for me. And I will say, if you are intrigued by the disability community online, Twitter is definitely the place where I would start.
Gavin: 29:17 Thanks for listening to this interview with S.E. Smith. I hope you found it interesting and motivating. There’s a lot of ways for people to get involved in writing, and also to help those around them. If you’d like to find out more about the podcast, you can visit whatorigin.com, and join the conversation on Facebook: facebook.com/whatorigin. We are also available on all the major streaming sites, so Spotify, iTunes, or whatever you prefer, it’s available there.