I wanted to start by talking about your mom. She’s a writer, and she wrote a newspaper column about your family growing up. What did you take from your mom as not only as a writer but also as someone who writes about their own life?

My mom’s column started out as a local feature column that was really about other people in the community. She talked to people who had brain tumors, premature babies, liver cancer—the more inoperable and dire the better. As the weeks and years went on, she turned her gaze more toward herself and her own battle with non-Hodgkin’s lymphoma, and then the cast of characters that were my four siblings and my dad. I think seeing her make herself the hero of her own story—and in so many ways, the hero of my story—was really instructive. Instead of being someone who said, “I am not my cancer, this isn’t who I am,” my mom was the person who just charged straight into illness and disability, although she wouldn’t have identified at the time as disabled. She owned her narrative, she owned her story. She made her struggle funny, silly, and noble. Even though it was a lighter feature column, she did a lot of really detailed reporting about her own prognosis, about the conversations that she had with her doctors, and particularly about being a woman in the Mountain West at that time. So many of those stories would have otherwise been dismissed— she was a woman, she was a mom, she was primarily a homemaker. But she gave such import to her own struggle and was really bold about portraying even things like her anger. No topic was off the table. She would write about my leg surgeries and my recovery from leg surgeries. She wrote about my grandma Rosie, who was in a series of nursing homes and underwent shock therapy treatment and had a condition called progressive supranuclear palsy. [She wrote about] my dad diving into the ocean in Hawaii and suffering a pretty serious spinal injury. Nothing was off the table at all.

In the guise of this feel-good column, she was still a hungry reporter who fearlessly portrayed the travails of her own body. I would try to plug into her column by writing schmaltzy poetry, much of which is in the book. In so many ways, I was bolstering her narrative and her heroism, but she was also truly teaching me how to write. She always said that I was talented, that I had important things to say.

I wasn’t like this superstar brainiac kid in school. Looking back, I faced some of what I would now call ableism. I think that kids all face it in different ways, but I couldn’t spell. I didn’t do well on tests. I started school in remedial classes and it was only because of my mom’s advocacy that I got out of those classes. In junior high, she lobbied the administration using my schmaltzy poetry to get me into the gifted and talented English track, which is of course itself really problematic now that I think about it. Like, “Oh, these are the gifted kids.” I think that she kind of turned me from “special” to “gifted” just by maternal sleight of hand. She would send some of her columns to national magazines and even get some of that published. I was able to walk around feeling like I was a published author and feeling such pride, even though for my school assignments, I would get notes that were like, “See me after class. Please rewrite this. This is supposed to be a rhyming poem and you have completely not fulfilled the assignment at all.” (laughs) But my mom was like, “Well, you know, that teacher’s just jealous of your talent. You’re one-of-a-kind. You’re original. Your writing is going to change the world. What does this teacher know?” She really had a bone deep belief in my ability to tell stories, and that was very much modeled after her practice as a writer.

The slightly more complicated tension in the book is the question of what stories get valorized and told and what stories don’t? What kinds of illnesses or bodily foibles or disabilities are celebrated and which are kept secret or hidden? I see the book really as a collection of narratives. The book starts with me quoting a paragraph from my mom’s column where she says I don’t have cerebral palsy. I really see the book as going back through my childhood and inserting my own body and my own physicality into my story and into everything else that was happening in my life. And in a way maybe tacitly saying that disability should be just as shameless and human as having cancer or having Lou Gehrig’s disease. Let’s erase that stigma and put my own body and my own lived experience into this story that has so many different layers of illness and family and queerness already layered into it. That was what I was trying to do with the book. Not just tell a story, but in my own way, correct the record to include my own perspective and myself as a character.

When she would have written the column where she said that you don’t have cerebral palsy, she definitively knew you had been, correct? You had been diagnosed as a child.

Absolutely. I was diagnosed at eighteen months and those columns were when I was in the sixth grade. She would, in a very detailed way, always tell me the story of my birth, that she had done a headstand to get me off the umbilical cord. She would even include little details, like there was a water spot on the wall across from her hospital bed in the delivery ward and it was in the exact shape of the head of William Shakespeare. At that moment, she knew that I was going to be a writer. [It was like] the birthday story that parents often tell for their kids, like “your dad was late to the delivery and the doctor was an idiot” or “the doctor was so short that he had to stand on a box to get to reach the hospital bed,” just all of those little details. It was really maternal subterfuge, and kind of dazzle camouflage, because what she didn’t say was, “You have spastic cerebral palsy because of prematurity and because of complications at delivery.” It was almost this Scheherazade-like dance that she did, where it was really more about hiding that diagnosis than it was about all of these colorful details. I mean, she was also a mom who was just telling a story, but it was very, very intentional.

Your mom springs off the page, even when she’s doing these things that you might not necessarily agree with. As a reader, you can’t help but be enthralled by her.

It’s so true, and she’s that way in life, too. She just has this charisma about her and she loves people. And she loves her kids so much. She’s just a character. She’s a classic storyteller. It’s so hard for me to kind of pinpoint the charisma or the charm of my mom just because she’s my mom, so some of it was craft and some of it was just writing what happened and what she said. (laughs) She was and is a very unconventional woman who lived a very conventional life until my dad’s death. I think people have always related to how she lived her life out loud and how she kind of called herself out on her own BS a little bit. She’s just kind of a truth teller. In a culture that prized perfection and glossy surfaces, she played the role and she didn’t, so I think that there was that real tension there. Then her life after my dad died was so surprising and just so affirming for me to see. Even though her relationship with [her partner] Alice isn’t like my relationship with my husband. They’re an older couple, they still don’t live in the same state. I think they’ll never be “live in a house with a white picket fence” kind of couple, but I think seeing that my mom was free to live a radically different life and a radically different kind of existence just spoke to the life that she’d always lived as a truth teller, as someone who was going to tell her story and kind of Trojan horse smuggle stories of grief, sorrow, and hilarity under a masthead that said “Silver Linings” with a glossy picture of her.

One thing that I was surprised by when I was reading the interview with your husband was how long you’ve been working on this memoir. You started it before you discovered your diagnosis with cerebral palsy. Is that correct?

That’s true. Yeah.

What it was like to writing your memoirs changed while you were still processing this withholding of information that your parents had done?

I started writing essays about my life in 2013 after graduating from the Michener Center for Writers with an MFA in fiction. I had these funny or interesting family stories. I sort of thought of them in the vein of “The Wonder Years.” They were lighter, they were sparkly, and they were fun. They explored my identity as a gay kid coming of age, but not as much about my leg or my disability, because anytime I tried to write about that, everything just got really hazy and the trance sort of broke. The one that I started with was the essay about meeting the actor who plays a munchkin in “The Wizard of Oz,” Margaret Pellegrini. When I was first writing it, it was really about my dashed showbiz dreams. But as I was telling that story, my leg just was beating at the door, or maybe it was just sort of spastically making itself known beneath me. I wrote that one and put it aside. I wrote the chapter about meeting the HIV/AIDS speaker who came to my seventh grade life science class. I was chugging away. I think I had maybe written some of the chapter about going with my dad to France, just sort of in various states of finished or not finished. When I found out about the diagnosis in 2014 when I was applying for private health insurance for the first time in my life, it turned the stories that I had already been working on into a reckoning with my body and my identity in ways that I hadn’t seen before. Instead of just silly romps through a happy childhood, it became a confrontation with secrecy and lies and fibs and lies of omission that had always coursed through my life.

A huge part of that was the lies that I told myself and the kind of blind spot that I’ve had about my own body. I’d always walked with a limp, I’d had surgeries on my hamstrings and Achilles tendon. I’d done physical therapy for years on and off until I was sixteen and recovering from my final leg surgery. It was a perception shift that changed the way I saw my body. It really gave me a body on the page and it gave me a personhood. It sounds kind of counterintuitive to say, but having a diagnosis of cerebral palsy actually gave me the distance that I needed to write more thoroughly and in greater depth about my life. I suddenly was in command of the facts of my life in ways that I hadn’t been before. So instead of my leg and my body just being this kind of amorphous thing that I didn’t really understand and I was embarrassed by and ashamed of, I was able to really drill down into those moments. Specifically with “The Wizard of Oz” chapter, I was able to identify why meeting a wonderful, talented, disabled actor had been interesting to me or even traumatic for me, and see it as an examination of how external ableism becomes internalized over time. It wasn’t just about a kid who has show biz dreams and is obsessed with “The Wizard Of Oz,” It was also a reckoning with my body and the way that I moved through the world and questions of did I want that spotlight on me? Did I want to play Quasimodo in “The Hunchback Of Notre Dame” or was that going to be an “indictment” of myself that I simply couldn’t take on? Or was there so much cognitive dissonance there that I was just like, “Nope, I have to give up acting entirely like, there’s absolutely no way that I can do this anymore.”

As I kept working on the book, the material got more mature and more about my sexuality. My leg kind of followed me into the bedroom, to Croatia, to being a caregiver for my dad, and to Texas where I met Lucas, the man I’d marry. I think the stories got more mature and more intricate and complicated as my life went on, and I certainly couldn’t have written the more mature older stuff If I didn’t know about cerebral palsy. It’s just really interesting that I was already writing about my body. The really cool thing for me is it let me be a journalist and a reporter about my own experience. It let me give a narrative to my body and to my disability. It was more like finding a missing piece than it was this revelation. It was like the piece of the story that suddenly made all of the rest of it make sense. Once my leg was locked into place, I was so much more free to tell these other stories and see how my family and even my sex life, or my intimate and romantic partners, all kind of connected back to my body and back to my experience on this earth.

It feels like that there’s a fearlessness to your writing in terms of no topic is off limits and that seems to be something that readers have really responded to. The book has been out for a few weeks. What has it been like getting reactions from readers?

I know this sounds like a cliche thing to say, but it’s been so incredible. I guess this sounds grandiose and I don’t mean it this way, but what I’ve learned even in just the past week is how much people need stories of disability and queerness out there in the world. People need to feel seen on the page. I think they like to be spoken to honestly. Once I was able to bring my vulnerability to the page, people bring their vulnerabilities to the page. Whether you’re gay and disabled or not, everybody grapples with shame and family secrets and the legacy of storytelling. I’ve been really moved by people’s openness and unflappability. I mean, I definitely have gotten a few one star reviews on Goodreads which I do not look at anymore, but I’ve learned a lot in the last few days. (laughs)

I guess it makes me sort of believe in people’s goodness that they want to engage. People need to laugh about their families and their bodies. We take such joy in our bodies, in our families. I think so often in the conversation today, with so much peril that queer and disabled people face, we so often forget the joy part of it. We forget the pride part of Pride sometimes, just that it’s really fun to be alive. It’s fun to tell stories. It’s fun to have a body. I think, if I could put it in one sentence, it’s just rediscovering some of that queer joy and disabled joy.

I’ve also just been incredibly moved by how the disabled community has embraced me and the book. My body is so particular to me and I’m so new to speaking about disability in any kind of a public way, where anyone would even half listen to me. I’ve been struck by the level of grace and the level of intelligence that folks living with disability have shown me.  It really makes me want to keep learning and keep paying it forward.

If I had to respond as to why the book has been met that way, I think it’s just that the world is hungry for stories of disabled people who are flawed and funny and complicated and have a million other things going on, and are just true, full characters on the page. So many of the narratives that I grew up with were after school specials or stories where gay or disabled characters— and to be clear, that’s just my lens or my way into this—died at the end. They were there to serve able bodied characters on their journeys of self-discovery. They weren’t sexual. Even in books I loved, like A Prayer for Owen Meany.

Or, you know, the stories of disability ended when you turned eighteen. It’s like, “Okay, well, you’ve had all your leg surgeries. You’re done. We raised you, go off in the world.” What I noticed is those junior high, high school years are actually the easy years. Even in college— although I had a complicated college experience—are the easy years because you have so much institutional support. I think that the real coming of age for me, as a later bloomer and a person who didn’t have all the answers, a person who was still reckoning with who he was in the world, that coming of age came so much later. Just telling a coming of age story that didn’t end when I was eighteen—or twenty-one, or even thirty—but kind of continues on to this day was a really powerful revelation for me to have and hopefully for other readers out there who have a similar experience.

You make the point that when you come out, whether as gay or disabled, you’re coming out for the rest of your life.

It never ends, but it’s good. I think that the coming out process can really just be a coming into process, coming into yourself, coming into your community. I think coming out is a perfectly descriptive way to put it, but I also think that it can be so much more about what you’re stepping into, rather than, you know what you’re coming out of. I mean, Dorothy wasn’t, like, coming out of her aunt and uncle’s house, she was stepping into Oz! (laughs) I think that little perception shift where there really is a queer, disabled world waiting to claim you and who wants you out there with them. When I was first coming out as gay, especially in my younger years in Utah as a teenager, I just thought playing ping pong with a straight guy who loved Keith Richards was the best I was gonna do. I actually am still friends with that guy. (laughs) We went to a couple of concerts a couple of weekends ago and I gave him the book. But I think now knowing that there really is a Technicolor world out there for people who are different in a range of ways to explore is just really exciting. I think that’s maybe a bit why it’s scary for the Ron DeSantises of the world and why there are book bans. It’s like trying to stuff Dorothy back in her house, and she’s like, “I’m not gonna go back in the house. I’m already way down the yellow brick road.”

A big part of your book is about Utah. Can you talk about writing about Utah as someone who would be an outsider in many ways, chiefly because you’re not Mormon.

I think as a kid, I was able to pass as Mormon because I looked like a prototypical Mormon kid and I shared so many interests with my Mormon friends and classmates. I love musicals. I love Disney. I got into a whole debate with people this weekend over whether or not I was a quote unquote Disney gay as a kid. (laughs) I mean, I literally had a trophy case full of Disney dolls. They did this series of Disney villains as Barbies back in the day, so I have Glenn Close as Cruella De Vil still in the plastic wrap, kept in mint condition for all of time. But I think what Utah does, and I kind of say this in my interview with Lucas too, but Utah just skips the gay topic sentence of saying we’re a gay society where gay people exist, therefore I love Disney or therefore, The Princess Bride is my favorite movie. There’s so much love and community in Utah.

When I was growing up, there also was so much repression, and it really wouldn’t have been safe to be an out gay kid. Thank God, I think that’s changed. I think it’s easy to gloss over the impact being marginalized has on gay people because so much has changed in just the past five or ten years. But I look at a relationship like my relationship with [my ex-boyfriend] Kevin. He very much had wanted to be Mormon or wanted to be a good Mormon at times in his life. When you’re marginalized for your entire life, it actually does start to have psychological consequences and I think that gay people are susceptible to being shunned and gaslit. I think the darker side of Utah can really be, if you don’t fit the mold, what then?

I didn’t ever feel like I’m in a position to write anthropologically, or in a sweeping Joan Didion way, about Utah as a place, just because that’s not the sort of writer I am. I haven’t done the homework to make that happen. But I am proud in the book that the Utah-ness of it all really does bubble forth. I think about Gail, my boss at the DOMA Alliance. She’s such a Utah character. She’s irrepressible, cheery, ditzy, determined, but also, weirdly one of the fiercest allies that I had in my life at that time. She’s not Mormon, but her partner was raised Mormon. No one is that far from Mormonism in Utah, in a variety of ways.

You write so honestly about your own foibles and imperfections, and also about the moments you come up short with different people in your life. How did you that layer of self-reflection make its way into your book?

I think I had published the France essay in Tampa Review. At that time, I used my French teacher’s real name and my friend’s real name. I hadn’t changed a thing. I’m still friends with the character Robin and I was Facebook friends with this French professor, who really did have such a funny, kooky, special relationship with my dad, in his own way. I asked my former teacher, now mentor, Elizabeth McCracken, “Elizabeth, how do you deal with writing in the age of social media where you’re so connected to all these people from your past?” And she just said, “It can’t all be transcendence.” It was just so true. When the you on the page is on a journey, you don’t have all of the growth and the epiphanies. You gain them through the course of the book.

When I was writing essays, it was all about the killer ending and the epiphany at the end. I think when it’s a chapter in a book, inherently you want the epiphany to come at the last page. At MFA school we used to call it the complexity of afterthought. That was what made a short story a short story. It was sort of like the blank space after the last page was where you as the reader had the epiphany. Just allowing, especially as a disabled person, to be flawed, to not always say the right thing, to exhibit internalized ableism and homophobia and hopefully, by the end of the book, come to some kind of a place where you have some perspective on all of that stuff. Not to say that those things aren’t still things to think about or struggles for me, but to just try to be honest about what that journey was. I think the alternative would be to perpetuate this myth of isolation, like, “Oh, well, I was the only disabled person that I knew.” Well, that’s not true. I had a bunch of disabled kids in physical therapy, there were disabled kids in my acting troupe. I was actually in a world filled with disabled people, and so how did I treat them? How did we understand or misunderstand each other?

And finally, what role has the library played in your life?

This is an interesting bit of family lore, there’s a library in Pocatello that bears my last name. It’s the Marshall Public Library in Pocatello, Idaho, My grandparents gave money to make it happen a million years ago. I had the chance to actually go up to Pocatello two summers ago, right after I’d sold my book, and visit the Marshall Public Library. It was such an incredible space. They had all of my dad’s yearbooks from the 70s. I mean, they weren’t his yearbooks, they were his graduating class. I was able to pull them from the shelves and take pictures of all these pictures of my dad that no one in my family had seen in maybe forty years. They were pictures of him writing an article on a typewriter in his journalism class or being a member of this or that club. Just even as repositories of our own history, libraries are such an important resource.

When I was young, I did not understand the Dewey Decimal System. Looking back, I think it was very much related to some of the cognitive symptoms of cerebral palsy. It was just so foreign to me, how you could possibly find a book on the shelves, even in the era of the nineties where it was somewhat past card catalogs. At the public library in Holiday, Utah, you could type in the book title and author into a computer and then have like a blinking green screen, but it was too intimidating. I didn’t understand how to ever find books. Once I was a little bit older, I was able to put things on hold at the library. It really was this hack, where suddenly I could use the library because all I had to do was type it in my computer at home. I could take the time to figure out how to spell, I could do it at my own pace, and waiting for me there would be this cache of CDs, DVDs, and books of all kinds that I was free to read. It just let me read so much more widely and so much freely than I had when I was like a Barnes and Noble kid and everything was expensive. (laughs)

I would say I would say became an avid library user in my college years. I put a bunch of things on hold during the breaks and it let me be a very avid gay reader. It really did let me just explore all kinds of writers. I’m  a total library freak. It’s been so fun to see how the library has evolved, where now we have Libby and some of those other digital services. It’s never been easier to get your hands on library books. It’s a cliche to call libraries a safe space, but they truly are. I guess what I’m trying to say with the decimal system thing is, I think libraries are more accessible content-wise than ever, because you have digital options. You can put things on hold. It really is amazing to see just the level of curation and attention that librarians give books.

This interview has been edited and condensed for clarity.

The post Greg Marshall On Writing Fearlessly And Rediscovering Queer Joy first appeared on Public Libraries Online.

My original plan this month was to write about “Outreach to People with Disabilities.” Yet that subject was soon replaced by a topic that preempts and precedes the concept of disability outreach: attitudinal barriers to library accessibility. While none of us sets out to block library accessibility with our attitude, attitude does in fact inform decisions about all library products and services. This mindset may unconsciously affect planning for library remodels and new facilities; how we present our physical and virtual collections; how we plan and market public programs; how we determine assistive technology needs, and whether to conduct outreach to people with disabilities. Attitude has a direct bearing on how we deliver all of our library products and services, but disability awareness should inform and support our ability to provide the best library service and materials possible.

Taking steps to include people of all abilities in public library programs and activities changes the outlook of both staff and visitors. We know in our personal lives that attitude shapes our thoughts and motives, so why would it not also affect decisions we make for our libraries? The goal of this discussion is to bring attitude into our awareness radar. Library accessibility first requires the level of awareness that places us as leaders in access, rather than reactors to accessibility issues. The difference between leading in access and reacting to accessibility begins with disability awareness. Considering the needs for all types of learners when planning library programs, activities, materials, and online services promotes the idea that increased access for people with disabilities means increased access for all. Planning for library accessibility opens doors to diverse and broad community connections. Moreover, it ensures people get connected with libraries, our goal!

Libraries that address access concerns during planning phases will face fewer challenges that result from accessibility blunders. Some of the most common reasons we review accessibility in our libraries include: Strategic priorities, legal requirements; demand from an individual or groups; or the topic is trending and brings renewed awareness. Most hasty accessibility quick fixes could be avoided if attitudes were honed for inclusion from the beginning. This not only applies to facility access, but when planning story times and other popular programs. Since we know that nearly 20% of the US population has one or more disabilities, we can assume people in our communities appreciate efforts toward access and inclusion. It’s not that libraries intentionally set out to ignore access issues, but inclusivity may not be considered early enough in the process of planning, training, and implementation of programs and activities. When accessibility demands originate from an individual or group, we often react as a result of that demand and consider it fixed until further notice. With library accessibility planted in the forefront of our minds, we will be ready to provide programs and services for people with disabilities before they are requested.

We can make huge strides in library accessibility beginning with our own attitude. Customer service delivered with the right attitude, one of inclusion and acceptance, can be easily accomplished. What will be remembered by library visitors is the attitude library staff conveyed, not the information shared. Consider the following attitudinal helps for providing a welcoming library experience:

• Share a friendly face
• Converse with a nonjudgmental look
• Provide encouragement and acceptance during the reference interview
• Make eye contact
• Acknowledge the importance of the person and their information request
• Abandon assumptions about physical or intellectual disabilities in favor of making a personal connection
• Relax and throw away fears that stem from lack of expertise

Source:

Nearly 1 in 5 People Have a Disability in the U.S., Census Bureau Reports, https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html

The post Making an Attitudinal Change to Disabilities first appeared on Public Libraries Online.