The most important thing I want to share with anyone struggling with a disability is to tell them, “You are not alone in your experience.” I am not sharing this from a place of patronization or social appropriateness, but rather from personal experience. You see, for almost 20 years, I have lived my life as someone diagnosed with autism spectrum disorder. While this disorder places a label on me in some ways, I refuse to allow it to define who I am or allow others to impose their prejudices or stigmas upon me.

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I have had to confront many challenges throughout my life others might not understand. For example, I stopped speaking and worked hard to develop my own words in order to communicate with others. I went through years of speech therapy and other services that helped me greatly. I also endured years of bullying, exclusion, and peer rejection. It hurt at times, and I did not understand much of why it happened, which is a big part of autism in itself.

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Eventually, with a lot of work, I was able to be more social and have a more neurotypical-ish life. I was able to get to know people and build relationships. At the same time, when I look back on my early days in school, bullying was common for many kids with disabilities. It happened, and it was never right.

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During my senior year, I had some extra time each day in my schedule. I decided that I wanted to help with the child reading program at the nearby elementary school. It was a common activity for Senior Service, where seniors give back to their communities. At that point, my mom and I went to the school guidance counselor, who oversaw setting it up.

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To our absolute shock and disappointment, she immediately shot down the request and told me that I could not do that activity because of my autism. We were both shocked and my mom was angry. She had dealt with many ignorant people when it came to these kinds of situations, but this counselor had crossed the line.

 
She not only discriminated against my request to participate in a program others could, but she also later told my mother “He is not going to make it at Susquehanna.” I felt sorry for that woman, for she had no idea who she was dealing with.

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For me, it was incredibly hurtful to see someone in that position not give a student a chance to do something meaningful because of their disability and be so obvious of their own prejudices and discriminatory beliefs. She destroyed any chance of a relationship that would have allowed me to participate in a productive, community centered activity, while also insulting me because of my disability.

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Our life is a series of experiences, learning, and relationships. The counselor chose not to get to know me at all during my four years in high school because of her own personal thoughts about people with disabilities. The world is filled with others who think much like she does. They hear the word ‘disability,’ and they think of inferior, lesser in some way, different, or inadequate.

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All these words and many more have been used as descriptors of people just like me. Until we start to correct them, the world will be missing an important part of the population, those with disabilities who have other abilities they want to share and contribute to their communities and the world.
 
The publishing industry itself has its own prejudices and misperceptions like other businesses, employers, and community members. Until we can discuss topics like disabilities with complete honesty in a safe place with these members of society, members of the publishing industry will continue their inaccurate opinions and beliefs and an amazing part of the population will not be actively represented in these areas.

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We can think of the publishing industry as a series of relationships. Editors, for example, must find authors whose work would best fit their press’s vision. They must build trust with an author and help them achieve their goal of making their work public. This process involves communication with other teams, such as artists and marketers. For marketers, their goal is to connect the author with the wider market to make their work profitable. Artists and marketers then communicate to make visuals that represent the author’s vision while also appealing to potential readers. All these relationships come together in publishing something that people can connect to and share with others.

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It is this same industry, however, that still struggles with building relationships with disabled writers, editors, marketers, and artists who seek to share their experiences and their talents.

 
In an industry that is meant to inform, tell stories, and connect readers through the written word, why does this occur?
 
As a collective action, publishing is an excellent way of sharing our experiences with each other. I was able to build relationships with people I met on campus and in doing publishing work. Each of them had abilities that helped them succeed not just individually, but on a wider social level. My mom and my brother were also always there for me. They each had skillsets that helped people in their daily lives. My mom’s background in special education allowed her to help myself and others on the autism spectrum, and my brother was able to use his skills to create a resource guide for high school students after college.

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Building a publishing community can help us do the same for each other. Artists, writers, and marketers can each engage in their community using their skills to publish something positive and meaningful. By making our works public, it can help reduce isolation that we may face about our own experiences with disability. Positive connections are essential in transforming the publishing industry into something genuine and inclusive for the greater benefit of our society. It can make us feel whole, and able to do great things in our own, unique lives as members of the publishing industry.

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There are many disabled members of the industry who have faced these challenges. Alaina Leary, a queer Boston-based award-winning publishing professional with autism, experienced this within her own work. In an upper-fiction college workshop, Leary had written a contemporary love story between two best friends, one of which was in a wheelchair and was accompanied by a service dog.  

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The responses that she had gotten were positive, but many of the follow-up questions were aimed at the character’s disability: “Why is she in a wheelchair?” “Was he her friend before she was in a wheelchair?” “Was it an accident? The story felt unfinished. I kept waiting for the reveal about when she became paralyzed,” (Leary).

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Leary felt hurt by these responses, because she had intended the story to be more about the romantic relationship between two people. These were experiences she had with her own best friend, and her disability was based on her own that she had lived with her whole life. To write a story that was atypical of the perceptions of disability did not make sense to the people that gave her that feedback.  

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There was one question that rang in her mind at that moment.

 

“Why are so many stories about disabled people written by our friends, families, and caretakers instead of by us?” (Leary).

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She identified how so many of the stories that were being written about people with disabilities only “offer pity and inspiration porn,” (Leary). She defines inspiration porn occurring when people with disabilities are “hailed” as being inspirational only because of their disability, not for their own talents or abilities. In these types of stories, disabled people doing things considered normal, such as publishing a book or running a company, are considered “inspirational” only because a person with disabilities did it (Leary).

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Disability misinformation has also occurred among publishing companies. Ariel Henley, a writer with Crouzon syndrome, also encountered a situation in which an editor had added “incorrect facts” about her condition in order to make it appear more “inspiring” to the reader (Leary). When she requested that the incorrect information be edited and corrected, she was given no response.

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“In everything I write, advocacy and awareness are my main focus, so spreading incorrect information, and having my story written in a way that made it seem like I was born to inspire others to appreciate how good they have it, was incredibly frustrating and disappointing,” (Leary).

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Henley wasn’t given a chance to show how dangerous this misinformation can be in the publishing industry, especially among presses that are more prestigious than others. That kind of censorship prevents growth for the presses and enables gatekeeping for the sake of keeping things the same.

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These assumptions and depictions are a result of a publishing demographic with a non-disabled majority. According to a 2015 Diversity Baseline Survey by Lee and Low Books, 92% of the publishing industry identified as being non-disabled, while 8% identified as being disabled. In addition, only 8% of editors, 6% of sales and marketing, and 4% of executives identified as being disabled (Caitlin and Dahlen). 

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Such statistics reveal how gatekeeping has not only kept people with disabilities from being properly represented in publishing, but also how these “inspiration” stories can be published without allowing feedback from disabled members of the industry (Leary).

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The main area of concern comes from this type of gatekeeping that prevents people with disabilities from achieving their goals and making a difference in their societies.  

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Publishers must consider how they communicate with newly graduated students entering the industry. In “The Three Phases of Editing,” Peter Ginna highlights the editor not just as a “connector” between writer and reader, but also a “translator” that improves the method of communication from one person to another (Ginna 3). This must also apply to disabled writers, marketers, and artists who use different methods of communication to adapt and succeed in their careers. The editorial team must consider how a person with a disability communicates, either verbally or nonverbally. Changing these perceptions and building a more inclusive environment is essential within the publishing industry, because there are new stories to tell. We lose something special when we isolate someone to maintain a false sense of reality. If you can give someone a chance to grow and develop their craft, then it can be beneficial for everyone involved in the publishing press.

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Publishing in its entirety can be a valuable tool that can help you find success in your career as well as make a positive impact for other people with disabilities. My experience with the world of publishing has shown me the value of making connections. Not solely for the purposes of networking, but as a part of a shared experience. You never know what someone may be going through, or have gone through, in their lives. I shared my expertise in history and writing with a local publication, and it led to a new opportunity for educational growth. Over the summer, I wrote articles in English for a charity organization in Vietnam that helped different groups of people, including people with disabilities. It was these experiences that helped me to connect with others that aim to help people and to change stereotypes about disabilities.

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We can become translators that bridge the gap between disability and publishing. Therefore, student publications like The Junction are so important. We can look at what has been done in the past and open new doors to help students with a disability find their way in the industry. Whether it be art, craft, or business, shared experiences help younger people find ways to use their talents to succeed.  

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Success, however, must be defined not just on an individual level, but also on a community level. Below are some publications that can help you find organizations and people dedicated to breaking stereotypes about disability in the publishing industry. More importantly, they can link you to resources that are connected to community efforts to help children and people. Doing so can help you find a path to making a positive impact in your life and the lives of so many others in need.

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Kaleidoscope (publishing magazine based in Akron focusing on literature and the fine arts, as well as community resources)

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Writing Tips Oasis (if you would like to pursue special education through publishing)  

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Nicole Melanson Website(list of publications focused on disability diversity)