If the media industry wants to change the way it tells disabled stories, then it has to listen — or better yet, let disabled journalists go on stage

The marginalization of the disabled community is not just a media problem, but the media is paramount in shaping and transforming the public’s understanding of disability

It is estimated that there are one billion people, or 15% of the world’s population, who experience some form of disability. Yet, we don’t see disabled people in the media often—if we do, they too often exist as tropes.

Within the disabled community, there are conflicting sentiments about how they should perceive disabilities, but increasingly more agree that disability is not just a medical condition or a disease—it is an identity, a culture, and a community, and that the majority of the world doesn’t see it this way.

The marginalization of the disabled community is not just a media problem, but the media is paramount in shaping and transforming the public’s understanding of disability.

More disabled representation

One solution would come to mind: hiring more disabled writers. We can never see each other without biases and assumptions, just like we can hardly expect cisgender to fully appreciate non-binary’s struggles or racial majority to explain what being an ethnic minority is like. Non-disabled journalists do not understand the disabled community, their culture, institution, and leadership, so they would miss important stories.

Of course, everyone has the liberty and potential to be the expert of another group, but we can hardly ignore the power dynamic that comes into play between the seen and the seer, the passive and the active, the voiceless and the storyteller.

If the media industry wants to change the way it tells disabled stories, then it has to listen — or better yet, let disabled journalists go on stage.

Moreover, telling stories on disability should never be the responsibility of one member of staff — it needs to permeate organizational culture and be taken seriously by senior leadership. That is, disability inclusivity is a mindset ingrained in every policy and infrastructure, such that it becomes a second nature of normal working life. This is important because only when the organization is inclusive can disabled journalists and editors thrive in the environment.

Standards of measurement

Then the question becomes: Is there a reliable benchmark by which one can measure a media agency’s disabled representation? While publishing gender and race make-up has become a disclosure standard, we have very little corresponding data on disability available, in newsrooms or otherwise.

It would seem that disabled representation could be lumped under the broad category of “diversity,” and be handled in the same way as other metrics such as gender, race, and socio-economic class. However, the murky definition of disability lends itself to many, sometimes vastly different, interpretations. Disabilities encompass everything from deafness to autism, and even within one type of disability, the experience could be different depending on how much one’s life is affected by it.

Lack of understanding of disability experience leads to simplistic survey questions that cannot be meaningfully interpreted and used in research. Globally, national census and household surveys tend to ask the most basic question: “Do you have a disability?” which could mean different things to different people.

While straightforward disability data are elusive, the challenges should encourage nuances in data collection instead of discouraging it all together. U.S. Office of Disability Employment Policy offers some suggestions for data collectors: General information about employees’ disability; why they are disclosing your disability; how their disability affects your ability to perform key job tasks; types of accommodations that have worked for them in the past; and types of accommodations you anticipate needing in the workplace.

It might sound counter-intuitive, but accuracy in data-collection could depend on inclusive practices. If no accommodations or supports are available or anticipated, or discrimination against disabled people is a norm, disabled writers may choose to withhold their disability information. Moreover, questions about disability are deeply personal and should be handled with extra caution. Disabled people do not owe anyone information — it is the inaccessible infrastructure that forces them to exchange privacy for a normal life.

Therefore, it should be made clear to employees upon collecting their data that: who has access to the data; assurance that they would not be discriminated on the basis on their disability; who reviews and provides the accommodations and what would happen if accommodations cannot be met with existing resources; and many other information that not just ensures confidentiality and transparency, but shows the organization’s competency to meet the needs.

Where are we now with disability data collection and disclosure?

Disclosing disability data, just like how we have increasingly seen for traditionally underrepresented and marginalized groups, is a helpful tool in holding the organization accountable and encouraging diversifying the demographics of their staff.

However, the media industry does not seem to fare well in the most basic elements of diversity report. Many newsrooms are simply reluctant to disclose their demographics. The News Leaders Association, the country’s leading advocate for diversity in media, announced last year that it was pausing its diversity survey of 1,700 newspaper and digital media outlets, in hopes of improving it to increase participation rate. Their latest survey from 2019 does not include any disability data. Reuters’ Diversity Report 2021 includes disability data, yet the availability of data of global newsroom stands at 2%, the lowest among all the diversity metrics relating to gender, sex, and race.

The glaring lack of disability data is not an issue unique to the media, but that does not mean that we can just sit back and wait. The lack of general data collection means that news organizations are unable to remove the barriers to the progression and representation of disabled staff in the workplace, a 2018 Equality and Human Rights Commission report on disability and ethnicity pay gaps says.

In fact, data is paramount in any diversity and inclusion (D&I) efforts. The more – and better-quality – people data employers collect, the better they can design and target D&I activity and evaluate progress. This means that news organizations need to establish a baseline picture of where they stand in terms of disability, set aspirational goals in line with their organization’s development and visions, and measure against these targets annually.

Useful resources on disability: