Disabled and Un-degreed – and Unpublished

Like many people with disabilities, I was not able to finish high school. In my case, it was not ableism that pushed me out of high school. Rather, I was too physically ill and otherwise impaired to participate in any way, regardless of what accommodations were available. While ableism did not make it easy for me to attend, it was not ableism that forced me to quit: it was a matter of severity of impairment. In this, I am not alone.

1 in 5 people with disabilities don’t finish high school

1 in 5 people with disabilities don’t finish high school, versus 1 in 10 non-disabled people [1]. Disabled folks’ college graduation rate is half that of non-disabled people [2]. In 2014, only 16.4 percent of people with a disability aged 25 or older had completed a bachelor’s degree [3]. Despite the small percentage of college graduates among disabled people, the disability and chronic illness memoir market is authored mainly by college-educated disabled people.

Because the relatively small number of people who finish college then make up the majority of the published voices, their stories of success have an outsized impact on the public’s perception of the lives of the majority of people who live with disabilities.

Caz Killjoy is a disability activist, social justice educator, writer, and storyteller.

We can celebrate the success of those disabled folks who did graduate and discuss how to make high school and college education more accessible for people with disabilities. However, that conversation should not negate, or silence, the existence and experience of those whom the system did not or cannot help.

Don’t negate the existence of those whom the system did not or cannot help

These are the stories that I am interested in reading: stories from those who don’t fit the mold, that aren’t inspiration porn, that aren’t about overcoming disability. Stories from people who had to leave school despite the Individuals with Disabilities Education Act (IDEA), despite having an Individualized Education Program (IEP). Stories from people who turned to Vocational Rehabilitation (VR), but VR was unable to find them possible education or employment opportunities. Stories from those with more severe impairments who are unable to “make the system work” for them. Stories from folks society left behind and disregarded. Stories from people who the system fails.

When there is discussion of the importance of “seeing yourself” in the media and how much representation matters, I want publishers to take people like me into account, too. I want to read the folks that rarely get published: non-college educated disabled people who rely on benefits and don’t get off benefits at the end of the publication. I am frustrated by the lack of this representation in an era when so much emphasis is put on “centering the most impacted.” Clearly, someone forgot to tell capitalism about disability justice.

There are a myriad of reasons why people like myself are unable to finish high school or college and don’t get heard from or published:

• low self-worth (fear of rejection);
• inability to meet deadlines due to living a constant bureaucratic nightmare;
• severity of impairment (disability);
• unreliable health;
• lack of social capital;
• lack of generational wealth;
• housing instability;
• food insecurity;
• lack of assistive services for everyday needs;
• lack of assistive technology;
• lack of adequate health care;
• higher occurrences of experienced violence and oppression;
• state-imposed income limits;

and above all, the publishing industry equating profitability with books that have happy endings and inspirational stories.

Publish us – we want to tell our stories in our own voices. Our representation matters, too

My life as an impoverished disabled person might be incredibly challenging but it has its good points. In that, it is no different from most people’s lives. Just because my story, and the stories of many others, might not (currently) have a happy ending, doesn’t mean it’s depressing, or is not worth telling. It’s all about perspective. Our stories have much to reveal about the daily struggles and daily disability injustices forced on us by systemic ableism and bureaucratic systems (governmental, medical) designed to make sure we fail.

Many of us who are severely impaired are tired of only reading books by college-educated disabled people (who tend to also be disabled people who are able to maintain their social media presence and sustain employment). Mainstream publishing needs to represent folks’ stories that aren’t inspirational and that don’t have happy conclusions. We want to witness a broader diversity of narration. We want to tell our stories in our own voices. Our representation matters, too.

[1,2,3] “People with a Disability Less Likely to Have Completed a Bachelor’s Degree : The Economics Daily: U.S. Bureau of Labor Statistics.” Bls.gov, 20 July 2015, www.bls.gov/opub/ted/2015/people-with-a-disability-less-likely-to-have-completed-a-bachelors-degree.htm.