News Ticker

Special Needs in Strange Worlds: A Conversation With My Brother

I’ve mentioned a few times that my big brother is the reason I got into genre. He is also the entire reason I write this column.

My brother Rob is disabled in numerous ways. Reading, for him, has always been a way to relate to the world, feel like he’s less alone, and help me understand his perspective. Rob is a hell of a guy, but due to severe seizures a few years ago, he can’t read anymore, which breaks my heart. He was the one who collected books and showed me what a wealth of information and experiences are in books. Books have helped me understand him more than I ever imagined I could.

I had a conversation on the phone with Rob to talk to him about what the genre means to him, and why he thinks that disabilities are important in speculative fiction. It was really enlightening to talk openly about disabilities in the genre with the person who got me into the genre in the first place. It was also really neat to see how disabilities are represented in the genre from a disabled person’s point of view.

Thanks to Rob for taking the time to do this interview. I hope you enjoy it as much as I did.

SARAH: When did you start getting into SFF?

ROB: Well, I had an MRI, the first of the twelve I’ve had, showed that I had the corpus callosum missing. I put the pieces together. Now I knew what was wrong and why I couldn’t do some things. I knew why people were reacting the way they were reacting around me. Now I knew I wasn’t stupid, and that I could work hard and read and function better. I decided to start reading because I was functionally illiterate. I went to the library and wandered around a lot. I read The Grapes of Wrath, Paradise Lost, Frankenstein and others. It is good stuff to read, but none of it ever clicked. I picked up The Wheel of Time and it hit me. I could read that and the people laughing at me at work were gone. The problems I had growing up with my disability and the pain in my back was gone because I disappeared into that book. It was more than watching a movie for an hour. For six hundred pages, I was there.

That book starts out and those characters had no clue what their powers were. They were flying blind. They were struggling and I related to it. Then I read George R. R. Martin, and Tyrion uses his brain to get over the limitations of his body. It helps to see that kind of stuff. I’m disappearing into another world. I’m leaving mine and I’m falling into this. I can see myself struggling in that Lannister family. I can see myself as Jon Snow for a second. You’re there. You aren’t you, stuck in a wheelchair, a man who can’t leave the house without help, who is at the mercy of someone who can walk to fix your wheelchair.

SARAH: It sounds like, for you, books are more than an escape; it is a way to relate to others without judgment?

ROB: Yeah. Asperger’s is entirely a social problem. I’m not slow, but I can’t deal with the outside world the way other people can. Neither can Simon in Memory, Sorrow, and Thorn [by Tad Williams], or Tyrion in A Song of Ice and Fire. To disappear from my world and see these guys in their worlds overcome their limitations is wonderful. I have a hard time overcoming it. I need to disappear, but it is good to say, “Oh wait a minute, Tyrion is an example of someone who can take ridicule and use his intelligence as a weapon because he can’t fight any other way.” I have the same sort of struggles. Sometimes you need to forget that you’re the weird guy no one wants to be around. There’s one way to forget that, and that’s through books like Carol Berg’s Transformation or Hitchiker’s Guide to the Galaxy, which is funny but there are still struggles. I feel a lot less alone when I read.

SARAH: Are books a way for you to express how you feel?

ROB: There are all sorts of ways for people to learn unintentionally. If you take a class in business, that’s not the only thing you learn. People who read about Tyrion, or read about Simon, they aren’t really learning like you’d learn in a class, but you’re still seeing these people overcome their limitations. People are learning through what they read. They read about these characters and they might not sit back and wonder how to relate Tyrion to their real life, but in the background, the connection is there. You can’t ask, “What’s it like to be a little person?” but there is one in that book. It’s not polite to say, “Hey what’s it like to live your life?” It’s uncomfortable to communicate with people who have mental issues and you can’t always tell when someone is disabled. I don’t wear a sign that lists everything that’s wrong with me. When you read these characters, you understand a little bit about what it is like to have a limitation. It’s a window into that world. Readers, if they understand it or not are witness a little bit of what it is like to have a limitation and we all learn from that. You can’t be three feet tall. You can’t understand it, but you read Tyrion and you see how he does things, and you understand a little bit more.

SARAH: Is there enough disability in SFF?

ROB: I think there should be more. There are hidden things everywhere. No one is perfect. Characters are imperfect. That’s one of the reasons why I like George R. R. Martin. No one is completely good and no one is completely bad. In Tad Williams Memory, Sorrow, and Thorn, Simon has handicaps but he is still important. It’s there, but people don’t always realize it. There should be more of that in books. It shouldn’t be like “Look at me, I can write about a guy in a wheelchair.” It shouldn’t be obvious to prove that you can do it. It should be real, because disabilities are real, and that’s life for a lot of people. There should be more examples of people who overcome their limitations and do amazing things anyway. We are important.

SARAH: So disabilities in speculative fiction is about more than just relating to characters, but it is about educating others, as well?

ROB: Reading is an unintentional way to witness the life of a disabled person, and that helps readers respect disabilities. That’s why I don’t like when authors write an obviously disabled person to prove that they can write a disabled person. Thomas Covenant in the Chronicles of Thomas Covenant [by Stephen R. Donaldson] is very well done. Donaldson didn’t write Thomas to prove that he could write about a guy with leprosy, but he actually did lots of research. It is very detailed. He is part of the world like I am part of the world. Readers might not even know what they are learning about these disabilities, but they witnessing a little about what it is like to be disabled. I need to see that people can overcome their limitations and deal with their problems. We can be successful despite everything.

SARAH: For you, it seems like being isolated is part of your disability. Seeing isolated characters in novels is important to you because you relate to them.

ROB: Asperger’s is an entirely social issue. It’s how I deal with the outside world. Most of us with Asperger’s are home a lot because the outside world is a problem. We’re self-isolated, but it is the only way. Those isolated characters in books, like Fitz from Assassin’s Apprentice [by Robin Hobb], whose family doesn’t want anything to do with him, suffer because the whole world turns their back on them. It is important to see characters that are like that.

This is an important subject to talk about because you can’t live my life or understand how I see the world. You read about these problems and these characters, and learn more tolerance, understanding, and sympathy through reading. We need more of that.

SARAH: You can’t read anymore due to your brain problem. Do you miss it?

ROB: Yeah. So far now I’ve had four big concussions caused by numerous big seizures. Every one of them has done brain damage. Between the brain damage and the ACC (Agenesis of the corpus callosum), I have a hard time concentrating. I can’t follow complex plots anymore. I can still read Zelazny because it is written with less side plots, but it takes forever. I have no memory so I forget that I’m reading. I can’t concentrate anymore, so I never do it. It’s too hard.

SARAH: So what do you do now?

ROB: The only thing I can do. I try to remember what I used to read. I’m floating, trying to figure things out now because there is nothing there anymore. It’s really hard right now. I’m completely alone in everything. No one can figure it out for me, and I can’t read so I can’t disappear like that anymore. It makes it really hard. That’s why I make up my own little worlds to disappear into. That’s all I can do.

SARAH: Do you think people in the genre talk about disabilities enough? Do you think discussion about disabilities is important?

ROB: I don’t think they talk about disabilities enough, and it is a very important thing to talk about. It is an important because it is real. You can witness the life of a person with that problem. If the character is a well written and the disability is an in-depth part of that world, it is very good for people to witness, and for people like me to read. It needs to be there more. There aren’t a whole lot of people writing these characters. They are hard to write.

SARAH: Do you think authors are intimidated to write disabilities?

ROB: Yeah, they are. Not everything is easy. If you don’t have any problems, it is hard to put yourself in that place. You have to put yourself in an uncomfortable place to make the disabilities real in your book. Like The Chronicles of Thomas Covenant, how do you write about leprosy if you don’t have leprosy? How do make it real? It’s hard to write those characters well, if you don’t have that problem, so people avoid doing it.

SARAH: What do you think that discussions about disability in the genre could accomplish?

ROB: I hope these discussions shows authors that it is important to include disabilities in their worlds. I hope that this interview, and your articles, show others that there are people like me that they can build on, or use as an influence from character building. That’s important. It’s not just for me to read about, though that’s important. Reading and talking openly about disabilities helps people understand what it is like to have a disability, which helps them understand and respect people like me.

SARAH: Final thoughts?

ROB: I don’t think so. Thanks for interviewing me.

25 Comments on Special Needs in Strange Worlds: A Conversation With My Brother

  1. Thanks for this great interview, it gave me a completely new view why characters with disabilities are important in literature and how they can help real persons with disabilities.

    I hope that your brother will manage to get better so he could at least read the books. I’m not sure if it’s possible, but it was really sad to read that he can’t enjoy the books anymore … Pass him my thanks for sharing his story with us.

    • It’s not something that will be fixed, but I think he does enjoy TV more now than he used to, but it is still hard on him.

      I will pass on your thanks 🙂

  2. Thank you so much for sharing this perspective, Sarah. The love you have for your brother clearly influences you, in term, in presenting the SNISW perspective to us.

  3. Thanks for sharing this. I’m so sorry your brother can’t read any more, and I hope he can find something that brings him some of the same happiness. TV shows, perhaps? Many of them are quite good and not all of them have complex story lines.

    • You’re right, TV has gotten better over the past few years, and I think he enjoys it more than he used to. It’s still not reading… but at least it is something. 🙂

  4. Wow…just wow. Powerful piece Sarah. Pass on warm thoughts to your brother (who has a great name).

    • Will do, and I’m glad you liked it. I think this interview went really well, and it is an installment of this column that I will always be proud of. His perspective is important and I’m so glad he was willing to share it. I’ll pass on your regards.

  5. Thanks so much for interviewing your brother. It makes me very sad that he cannot read anymore; I don’t know what I would do without reading. It’s really hard to imagine. However, his answers to your questions gives me hope for those in my life who will face similar challenges, and I can also take comfort in the fact that reading is important to them, and will actually help them cope with life.

    I wish the best for you and your brother.

    • I think not being able to read is a huge blow to my brother. He was the first person I ever knew who collected books ardently. I mean, he COLLECTED books. He had tons of them, and was on a first name basis with LOTS of bookstore employees. It’s pretty tragic that he can’t read anymore.

  6. Mazarkis Williams // November 26, 2013 at 10:22 am //

    Thanks to you and your brother Rob for a great interview. His perspective is enlightening.

  7. Such an important perspective, so rarely heard. Thank you, Sarah and Rob.

    (Has Rob tried audiobooks, now that reading print is no longer possible? Or short fiction podcasts, if longer, multi-layered narratives are too difficult to follow?)

  8. This was a powerful and very enlightening piece. Many thanks to both Sarah and Rob for doing this. I really can’t find the right words to express how much of an impression this made on me, except to give thanks that you and your brother are so open and so willing to educate people on what it’s all about.

  9. Thank you Sarah for interviewing your brother and thank you to Rob for sharing these thoughts. A brilliant and important article. It’s left me with lots to think about, and also a great deal of hope in how books can spread understanding. Please pass on my thanks to Rob.

    • I’ll pass on your thanks to Rob. I think he’s thrilled that this interview has had such an impact. To tell you the truth, I am, too. I think his perspective is one that we don’t hear enough of and I’m thrilled that he was brave enough to share it.

  10. Wonderful, heart-breaking conversation that you two had. Not heart-breaking because of the Asperger’s as the way you cope with it is inspiring, but heart-breaking because this very important coping mechanism of reading (not to mention something that is just pleasurable to do) has been taken away from you. I am sorry that this has happened.

    Wow, though, to see how fiction helped you gain so much understanding and control and gave you an outlet is great and I applaud your forthrightness in talking about why having disabilities addressed in fiction, the right way, with courage, is important.

    I hope you can keep dreaming of these worlds even if you cannot be visiting and revisiting them by reading. Thank you both.

  11. rob durkee // November 26, 2013 at 5:03 pm //

    thankyou for all the kind words and compliments ive always felt uncomfortable and wierd talking about myself its really good to read that my interview was so well received

    • Great, very well expressed answers, Rob. I remember talking a bit with you about a year ago, and it struck me then how uniquely you expressed yourself, and with what depth. It struck me again reading this. Really awesomely done!

  12. I’ll also suggest trying short story podcasts. Since Rob mentions having read mostly fantasy, he might enjoy Beneath Ceaseless Skies’ podcasts. (I listen to BCS, Clarkesworld, Lightspeed, and a few others. BCS, besides trending more towards fantasy, usually have fairly straightforward storylines. CW and LS sometimes get into stories that are longer, more complex, or sometimes just weird.)

  13. Thank you so much for sharing this with us, Sarah! It was eye opening and I think anything that can help us move forward with learning more about certain disabilities is a wonderful thing, and speaking of wonderful, your brother is amazing and very brave!

  14. The protagonist of my novel Vampire Syndrome is Jack Wendell, a Special Olympics champion born with Down Syndrome who becomes a vampire. His problem is that the vampire law enforcers are ordered to terminate any newly-turned “disabled” vampires, under a traditional belief that “disabled” vampires pose a security risk to the general vampire community.

Comments are closed.

%d bloggers like this: