What It’s Like Being Disabled On The Internet

Being a disabled woman on the Internet can be dangerous. We endure intrusion, ridicule, mock compliments and violent words. Our photos are misused in freakshow-style clickbait social media posts. Articles written about us are often dripping in inspiration porn.  Sometimes our photos are even censored by social media platforms. 

In 2019, UK-based journalist Dr Frances Ryan reported that online abuse of disabled people is only increasing, and it's not being taken seriously.

“I’ve never liked the term 'real life' to signify 'not online'”, she wrote. “In an era when social media is central to much human interaction, and a phone can bring the whole world into our palms, the idea that what happens on the internet is somehow 'less real' feels like it’s missing the point.

"This is not least the case for victims of online abuse; sites like Facebook and Twitter have become breeding grounds for very real hate.”

I strongly agree — online is real life. For me, social media is an extension of my workplace. And it can be unsafe.

I don’t get that much hate speech online, considering I have a rare severe skin condition called Ichthyosis (which makes my skin red, scaly and painful), and how prevalent I am on social media. But not long ago, I got some horrific emails relating to my facial difference and skin condition that shook me.

I believe in outing the hate speech, if only to share the load. I don’t want to endure this alone. I always take the time to block out email addresses and phone numbers, but I'm not sure it's worth it.

It all started when Rudrendra sent me a “love letter” on behalf of his friend.  

Rudrendra wrote several emails:

Followed closely by:

I had screenshot the messages and shared them to my Instagram Stories, with the caption “creep”. When I woke up the next morning, I had several more emails — from Rudrendra, angry at me (he was just trying to be nice!).

One of them went:

And then Maya, apparently Rudrendra’s mother, wrote to me, apologising.  Later she claimed her son was autistic, but disability is no excuse for bad behaviour. 

They were all from the same IP address and email address in another country. I suspect they just want attention, and they’ll get it in me sharing these comments with you. But the attention will be on how vile they are.

To be clear, I don’t take what they say about my appearance to heart. Them calling me ugly is nothing I haven’t heard before. 

The mock compliments and then the escalation when I outed them is entitled behaviour. What I'm really disgusted at is the email that says I  should be thankful I was born ugly, that I can walk, and that I haven’t been sexually assaulted (implying that because I’m disabled and apparently not attractive enough to be a target). That is a truly disturbing sentiment — and just not true.

Disabled women actually experience sexual assault at a higher rate than non-disabled women. Disabled women are also more likely to endure violence than non-disabled women — and it’s often because of these attitudes that our friend Rudrendra has shown here.

Rudrendra and Maya probably thought they were having a laugh with a stranger. But in doing so, they’ve revealed something very sinister about how disabled people are sometimes viewed.

I do hope Rudrendra and Maya get some better hobbies, ones that include respecting women.

So many of my disabled friends — particularly disabled women — deal with online hate speech, too.

Melissa Blake, who lives in Illinois in the United States has a genetic bone and muscle disorder called Freeman-Sheldon syndrome — a rare condition that affects the mouth, face, hands and feet. She is a wheelchair user. She has been blogging since 2008, and like me, her blog has led to her writing for the media — she writes about disability representation, pop culture and dating.

Internet trolls regularly appearance shame her, calling her “ugly” and “blobfish”, and telling her “no one is ever going to date you”. 

“I always say that selfies changed my life forever and they truly did,” she says. “In 2019, one of my tweets went viral after I posted three selfies as a response to online trolls who said I was too ugly to post my photo. It was a defiant response that also made a statement about disability and our unrealistic beauty standards.

“Not only did people relate to my story; but posting selfies has given me confidence and helped me make connections in my career! I’m now working on my first book about what I want people to know about disabilities!”

At the time of writing, Melissa’s tweet has had over 37,000 retweets and over 326,000 likes. 

While the eSafety Commissioner has little power to penalise people who partake in online trolling, I am really pleased to see they’ve developed a resource section to assist intellectually disabled women and their support workers to understand digital abuse better — and advice and where to seek help.

Recently, someone on Twitter told me that I should wear a mask in all of my photos.  It was in response to a photo I posted, me on my balcony at home, wearing a bright outfit, but no mask. 

The tweet came on the day of an anti-Covid lockdown protest that made national news. I had taken precautions to eliminate trolling by disallowing anyone to reply to my pro-vaccination tweets and any disdain I had for the protesters.  But they targeted other tweets of mine.   

When I asked why I must wear a mask, they said because I am a role model and that I should encourage mask-wearing. 

Of course, in the COVID lockdown situation we were in, it looked like they were being helpful, encouraging me to demonstrate good mask-wearing behaviour. But what they were doing is appearing to be concerned for me, and helpful, while suggesting my face is unsightly and needs to be covered up.  (There are plenty of photos of me wearing masks online.)

I noted that they’d recently signed up to Twitter, and all of their tweets were riling marginalised women, and amplifying anti-lockdown messages.

Some of my followers reported them, as did I. My reports, and other's reports, were not found to violate Twitter’s community standards. They got away with it.

I’ve often wondered who moderates social media platforms like Facebook, Twitter and Instagram, particularly because so much of the disability hate speech that I report is not found to breach community standards. 

And sometimes disabled people’s bodies and faces are deemed as offensive, so a content warning is placed over the photos, or removed entirely. The Special Books by Special Kids Instagram account is dedicated to amplifying photos and interviews with disabled people around the world. The account routinely gets a sensitive content warning over their photos. 

Chris Ulmer Founder of SBSK recently posted a caption below a photo of him with a young man, Zaid, who has a facial difference. The previous photo of the young man whose photo was deemed sensitive content by Instagram.

“It’s maddening to see the “sensitive content” warning that was put over Zaid’s video,” he wrote. “We’ve created a system that celebrates people editing themselves unrecognizable, setting an unattainable beauty standard for kids, but a person gets a warning thrown over their face simply for being disabled. This is a huge problem and has countless negative impacts in society. You’re perfect just as you are, Zaid. And everyone else besides these damn algorithms thinks so too.”

I’m aware of the emotional toll of social media content moderation. It’s been reported that people who moderate for Facebook experience a lot of anxiety, burnout and vicarious trauma due to seeing immense amounts of traumatic content. But something needs to change.

Overall, my experience on social media has been positive. It’s led to incredible opportunities and friendships, and I am grateful for the ability to curate my social media feeds by following disabled and diverse people, who I needed when I was younger.

But sometimes, when I get comments about how ugly I am, or how I “should be killed with fire” (which happened when my photo was misused on Reddit in 2013, I get disheartened. There are seemingly zero consequences for online trolls. Online is real life, and hate speech against us has a very real impact.