Disability inclusion and accessibility must become cultural practices

Identity-first language or person-first language? An individual’s choice to use one or the other is a reflection of them and the culture surrounding them. For example, I prefer identity-first language because I believe it’s important to remind society that its existing infrastructures can disable me more than my SMA. Someone else, on the other hand, may prefer person-first language because they don’t want society to see only their medical condition.

Both are valid opinions and reactions. Both depend on the context in which the speakers finds themselves.

Prompted by the Singaporean news outlet The Straits Times, I’ve been feeling lately that we fixate too much on what we say rather than on what we do to create accessible and inclusive spaces. In an effort to be more sensitive to people with disabilities, The Straits Times announced that, after consulting local communities and the United Nations’ guidelines for inclusive communication, its newsroom would use person-first language exclusively going forward.

The reasoning, according to Straits Times editor Jaime Ho, is that “language is a powerful tool to reflect and shape community attitudes as well as reflect the perspectives of particular groups.” Though he added, “But we also acknowledge that there is no one-size-fits-all description of disability.”

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As a journalist myself, I understand the necessity of uniform guidelines; they streamline the newsroom’s pipelines, and there is only so much space that can be dedicated to each article. The general public tends to be unaware of the nuances of language use within disabled communities.

But as a disabled person, I have questions: Why could they not include guidelines that allow subjects to choose how we identify, then work with us to tell readers our reasoning? Or better yet, create policies that commit to hiring disabled journalists and editors to write about our own communities and oversee disability-sensitive reporting when our nondisabled peers are unsure?

My questions became especially relevant after The Straits Times later reported that the Singaporean government is increasing funding for education and employment efforts for people with disabilities.

I agree with Ho that language is powerful. But it is not a power that wields itself, undirected and void of cultural influence. It can only do so much when not supported by actions.

‘Nothing about us without us’

To be clear, The Straits Times isn’t the sole offender of talking the talk but not walking the walk. I find that most spaces I’m in, be it physically in Singapore or online, don’t treat accessibility and inclusivity as holistic cultural practices. Most people unintentionally isolate aspects of those ideals and do the bare minimum they feel is required of them. It’s not because they’re malicious, but because internalized ableism precludes them from knowing how to do more effectively.

Accessibility and inclusion, to them, is therefore ramps at entrances instead of buffet tables where everyone can fetch their favorite food independently while chatting with friends in non-overstimulating environments.

The trouble is, the marginalization — the disabling — of our population has left us disadvantaged economically, socially, and politically. Though Singapore has many organizations dedicated to assisting disabled persons, including a national agency, it has only one cross-disability organization led entirely by people with disabilities, the Disabled People’s Association. One! In a country of more than 6 million people!

And a private company like SMA News Today’s parent company, Bionews, composed mostly of rare disease patients in leadership and staff, is unheard of in Singapore. It frankly makes me a little sad that my primary employer is American. It’s as if Singaporeans haven’t caught up in our imaginations of what disabled people can do and the value we provide.

So we need more than people willing to allow the disabled to use our voices, no matter where we live. We need people who’ll actively listen to us and trust us. We need enthusiastic collaborators who understand that accessibility must be a cultural cornerstone, because being nondisabled is an impermanent state. We need inclusion to mean more than nonprofits, education programs, statistics, and saying the right thing.

We need to be enabled to thrive in a world that reflects our humanity back at us.

What do you say? Will you lead with us?

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.