Pitfalls journalists should avoid when writing about people with disabilities
Race, gender, sexual identity, and age discrimination are all brought up regularly by the media and society, but disability typically doesn’t get enough press.
Conversations about disability are tricky, since no two people are affected in the same way. As someone who was diagnosed with a severe form of ulcerative colitis at age 6, I have become an advocate for myself as well as for the broader disability community. Along the way, I’ve noticed a striking series of misrepresentations in writing about people with disabilities. Here are a few things I would urge journalists to keep in mind while covering issues related to disability.
Our pain is not always physical. Isolation is a major issue. The emotional burden of being young with a chronic disease is incredible and many young adults live with some form of anxiety or depression. In my case, the emotional recovery was more difficult for me than the physical challenges. I lived in a form of isolation from society for nearly five years, from middle school to high school due to the severity of my disease. I was exhausted most of the time and my symptoms were progressing, forcing me to stay at home and rest. After I had my first major surgery, the removal of my large intestine, I went directly back to school full time. Living in this isolation for so long, it took persistence to join mainstream life as a teenager. To cope, I found a purpose in advocacy and pushed myself to connect with others. In covering these topics, it is important to understand the impact of social isolation on young people dealing with ongoing health issues.
We want to be portrayed as normal. Many people in the disability community, myself included, don’t want our disability to be an inspiration for others. Instead, we want to be a “normal” part of the society. This idea behind so-called “inspiration porn” is that others will find stories of people with disabilities to be inspirational because they achieved something while having a disability. But this just serves to highlight a person’s disability. Most of those with disabilities want to be as normal as any other person.
For example, climbing Mount Kilimanjaro for me has been a personal goal and is not something I would have liked portrayed only because I have ulcerative colitis. But check out the attention-grabbing caption here. While the article is well intentioned (and not the only one that has described my story in terms of disability), I didn’t climb Mount Kilimanjaro based on my ulcerative colitis; I climbed it because I love mountains. I cannot count the number of times I have gotten a comment along the lines of “You’re an inspiration” based on an academic or athletic accomplishment.
There are not enough investigative stories: This is especially true when it comes to young people with chronic diseases navigating the education system. It is unusual for me to find young adults with chronic diseases who have had a smooth experience navigating their school system. Imagine being young with a severe chronic condition, having to catch up with school, and on top of that dealing with administrators who are either uneducated about or indifferent toward chronic illnesses.
It would be an unfair expectation for the disability community to expect journalists to understand exactly how to cover our community. But by consulting stakeholder organizations and seeking input from real people living with various disabilities every step of the way, reporters can help reduce the damaging stigmas and inequalities we confront daily.
[Photo by Mustafa Khayat via Flickr.]