Helen Keller headshot
It says that Deafblind people like me should be relegated to obscurity because our accomplishments are unbelievable (Picture: Oscar White/Corbis/VCG via Getty Images)

‘Helen Keller is NOT real,’ one TikTok video argued.

‘There is absolutely NO way she was blind and deaf and wrote TWELVE books, learned FIVE whole languages, fell out of a building and DIDN’T die, went to Harvard, and had very very neat handwriting. She DOESN’T exist.’

Watching the video, I couldn’t help but think, ‘That’s funny – because I have learned five languages (albeit some of them badly). I didn’t go to Harvard but disability rights advocate Haben Girma did… and my handwriting can be tidy when I want it to be.’

And just like Helen Keller, I’m Deafblind.

Unfortunately this wasn’t just one video; last week a TikTok trend caught my attention in which people argued – some satirically and some very seriously – that Helen Keller couldn’t have written the books she wrote or accomplished the things that she did because of her disability.

According to some of those who believe this theory, her handlers did everything for her and she just took the credit for it.

This instantly infuriated me because, at its core, this ‘joke’ or conspiracy theory implies I can’t do any of the things that I’ve done in my life either.

It says that Deafblind people like me should be relegated to obscurity because our accomplishments are unbelievable.

This idea is emblematic of a deeper wound in our society, one where non-disabled people want to be able to look at a disabled person and see us for what we are without having to think.

They want to be able to slot us into the category of disabled – or not – and if we don’t fit into that perception, our accomplishments mustn’t be plausible. But here’s the thing, Blindness and Deafness are complex and they occur on a spectrum as wide and diverse as any other.

This TikTok phenomenon is predicated on the notion that Deafness and blindness are both conditions without variation. That they mean no vision, no hearing, no speech or ability to communicate if you have both. 

I was born into this body and it is one built on nuance. I don’t negotiate that with strangers. 

Being the kind of Deafblind that I am, most people don’t really notice until they see the hearing aids and white cane, then put two and two together.

But behind my collected exterior, I process the world through a complex system of coping mechanisms, adaptive aids and navigation strategies. I carry maps of multiple cities in my head and I use bluetooth enabled hearing aids to tell me when to turn left or right on new pathways.

I’ve developed a career as a writer, editor and disability activist in reaction to a hostile world – not just for the benefit of myself, but for the people like me who will come next. 

The most important challenge in my career as a writer has been to redefine the language of blindness and deafness because able-bodied people on the internet will try to argue that because I have sight and hearing in fractions, I’m lying about my Deafblindness. People like me and Helen Keller become frauds, fakers, cheats and liars.

If I seem angry, that’s because I am. 

So I took to Twitter to call out the conspiracy theory. I wrote: ‘Helen Keller was NOT a fraud! She went to college, learned how to read, write, and communicate. So did I!’ I added, ‘Bite me!’ 

Most of the comments were positive, but several people hurled the fraud label at me.

Yet, while the people on TikTok were children, those who came for me on Twitter appeared to be grown white men – with power over me.

These men came into my mentions to try to invalidate me with demands to prove that I am Deafblind. But what would satisfy them? Would a glimpse through my own eyes be enough? The legal requirements to identify blindness and Deafness are complicated and sometimes vary by jurisdiction.

So when these men came for me I chose not to give in. As a result, they took to their own timelines, crowing that they found another false Deafblind woman. 

And that’s what’s happened with Helen Keller conspiracy on TikTok.

Before this ‘trend’ I was more used to hearing Keller used by able-bodied people as an inspirational role model. But 90% of her accomplishments as an adult have been thrown into obscurity, with emphasis put on her language acquisition as a child.

Most people don’t know she helped found the ACLU and the Lions Club or that she was a Socialist. She gave speeches, communicated, wrote books and more. She was a complicated figure in her own right, worth study far beyond what I can cover in a single article.  

Yet her Deafblindness is what she is most known for, and even that is interpreted incorrectly. She’s painted as someone unable to hear at all or unable to see at all, but in her own autobiography, The Story of My Life, she described how she enjoyed the feeling of sounds, like cats purring, dogs barking or placing her hand on a piano as it was being played.

People think she couldn’t communicate because that is what the world imagines Deafblindness to be because it is what they have been taught by the intentional separation of disabled and non-disabled children.

Non-disabled people imagine that there is no communication without ability. That was a problem in itself, but this new ‘conspiracy’ is far more sinister.

Elsa Sjunneson headshot by Angie Gaul of Milestone Images
Go beyond Helen Keller and embrace the complexity of the human condition (Picture: Angie Gaul/Milestone Images)

The fact that this ableism is showing up on a social media platform populated largely by high schoolers is alarming to me, because that means that our children are learning it very young.

This doesn’t stop with a thread on Twitter going viral. This stops with people interrogating their own misconceptions about disability. If you’re reading this and you think to yourself that I can’t possibly be Deafblind because blind people have to be totally blind to count – think again.

Or if you think blind people can’t use iPhones, go do some research and educate yourself. Re-imagine what disability looks like, because it’s a much broader category than you’ve been taught. 

A few weeks ago, I was standing on a street corner waiting to pick something up at a store, and I looked down at my phone. My white cane was tucked under my arm. A man accosted me and demanded to know if I was really blind.

There is an obsession with policing disability. Unfortunately, it happens to me all the time. 

Deafblind people already face an uphill battle with disproportionate rates of unemployment due to language barriers, we don’t need any more discrimination based on our disabilities.

The way we understand disability must change and that comes about by reading the works of Deafblind writers like Haben Girma or Deaf writers like Terry Galloway. You can also read the Disability Visibility anthology by Alice Wong, which provides a broad spectrum of disability. 

Go beyond Helen Keller and embrace the complexity of the human condition.

The Helen Keller conspiracy theory is indicative of a broader problem, a narrative of disability that is poisoning our world and hurting everyone. Helen Keller did some incredible things and we should celebrate her many achievements but she wasn’t perfect either. No one is – we’re all human.

But in celebrating her legacy, remember that she’s just one person and calling her a fraud – as satire or not – is ableist.

When you question her legitimacy, you invalidate every Deafblind woman who came after her. The ones who aren’t obviously Deafblind, who don’t sign, who speak orally and who read with their fingertips. They’re the ones you’re truly calling a fraud.

You’re coming for me and my experience when you do that, and I’m not taking that lightly. I’m Deafblind, and if you don’t think I am? You can bite me.

Elsa Sjunneson is an award-winning non-fiction and speculative fiction writer and disability activist – you can check out her website here.

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