Yes, I’m disabled – but that doesn’t mean you have the right to ask me whatever you want

Society always has objectified disabled folk and there will always be those who seek to mock and humiliate others (Picture: Samantha Renke)

I’ve finally succumbed to the pressures of social media and I’m now on TikTok.

At 36, I thought I’d be way too old and really didn’t want to have another online responsibility, but here I am!

So while scrolling the other day, I came across a video with the title: ‘This is how I go to the bathroom as a disabled person.

As a disabled woman and a disability campaigner, I’m all for calling out the lack of provisions or reasonable adjustments in a disabling world, as well as highlighting ways in which we can create a more inclusive world.

But when I see posts from disability activists on social media on topics like this, I think to myself: Do I really need to share how I use the loo online? Does this really create awareness for positive change or does it just objectify disabled people further?

Of course, I don’t know why they chose to put it out there. Maybe they’re exhausted by all the questions, or maybe they feel it’s the only way their voice will be heard. But, to me, this sort of content feels rather cringy than informative.

On the surface, you may not see any harm in this. But stop and ask yourself: Would you expect non-disabled people to share on social media how they do extremely personal things like use the toilet or get dressed in the morning?

Posts like these are simply adding to the already inflated and unhealthy fascination society seems to have about disability.

Is there a danger that today’s online social media platforms can become the 21st Century’s version of the 1920s freak shows, where some disabled content creators are inadvertently doing more damage than good?

Society always has objectified disabled folk and there will always be those who seek to mock and humiliate others. We can’t stop that but what we can do is take back ownership and autonomy over our own lives. 

I feel like I’ve always been on show. As a child, I was the only physically disabled kid at my school.

I’d be put centre stage in any school pictures, I proudly got the part of the north star in the Christmas nativity play (mostly because the teachers could strategically attach the huge handmade star to my power wheelchair) and I received a lot of attention from my classmates.

I’ve appeared in my local newspaper more times than I’ve had hot dinners because they always seemed to favour the cute disabled kid on the front page.

Then there were a number of fundraisers in my name to raise money for wheelchairs or equipment. As a child, I was blissfully unaware of the harm of inspiration and pity porn.

Not forgetting all the unwanted attention you tend to get when the world sees your disability as something to mock, insult, feed their ignorant curiosity or to feel inspired by comparing their life to yours. Telling me things like I’m ‘brave’, ‘inspiring’ and ‘a fighter’, which is all objectification, stereotypes and tropes or online abuse by faceless trolls.

And now, after years and years of limelight – whether I’ve chosen it or not – I decided ironically, to have a career that means I’m a public figure.

When I first started out in the media industry almost 10 years ago, many of my first interviews were solely on sex and disability. In fact, for a time, I’d only be asked to share my lived experience on sex, relationships and dating as a wheelchair user.

There were so few opportunities for disabled creatives at the time and I needed to earn money so I felt pressured that if I said ‘no’, I’d be seen as awkward and I’d not be asked in future. 

For me, the final straw came when I was asked questions about how I masturbate or if I have sex in a wheelchair. This was the first interview I challenged and declined because I thought to myself, who is this benefitting?

Would you expect non-disabled people to post how they do extremely personal things like use the toilet or get dressed in the morning?

This moment prompted me to pitch my own stories going forward about my lived experiences outside of the world of dating. Saying no and expanding to other ideas was actually how I landed my column for a disability magazine.

As a disability rights ‘influencer’, I like to think that how I present myself online is now firmly under my control. It’s a true representation of who I am and what I believe in. I know that my posts have a positive impact on the people I am representing – in my case, the disability community.

Don’t get me wrong, there is no denying that social media is a wealth of knowledge.

I often wonder what my teenage years may have looked like if I had a pot of disabled creatives to follow, learn from, and interact with.

I would’ve undoubtedly found comfort in knowing that my life – seemingly as the only physically disabled kid in a small town – didn’t mean I was alone in this world and others knew what I was feeling and thinking.

In many ways, I applaud the disabled millennials and gen z-ers I follow online who are creating a new narrative that calls out ableism and says that disability isn’t a dirty word.

I take my hat off to any posts on disability pride and body positivity, and those that dare to challenge mega stars like Beyonce and Lizzo, who were recently called out for their ableist song lyrics.

Clearly the internet has the power to create and shape our culture for the good, yet the tendency by some disabled creatives to bare all about life with a disability – as they say – in order to create awareness and to educate our non-disabled peers feels sensational.

Posts like: ‘This is how my boyfriend carries me into the swimming pool’, ‘How I get dressed as a wheelchair user’, or ‘This is how I empty my colostomy bag’, feel like we are once again pandering to the needs of the non-disabled world.

Actually, what we need is non-disabled allies to support us with dismantling systemic issues, like inaccessible transport, marriage equality or employment equality – not to ask us how we use the loo!

But am I being a huge hypocrite?

Just the other week, I posted about my period and the barriers I face as a physically disabled woman when I’m on it. In my mind, it was an enlightening and thought-provoking post, however, I was fully aware that writing about this so openly online would potentially attract the wrong attention.

I still use hooks or clickbait in my own work and totally understand the power of luring people in with a rather show-stopping headline or a bit of shock tactics. But it’s one thing having a snazzy hook, so long as your content is authentic and respectful.

Asking yourself, ‘Is this truly something I want to share with the world or have I felt pressured into it?’ is a great way to set boundaries. Just because other people do something, doesn’t mean you have to jump on the band wagon.

Activism is subjective. Disabled people aren’t a monolith and what works or sits right with one deaf, disabled person or neurodivergent individual may not with another.

We can argue that there is no right or wrong way of presenting yourself online, and furthermore no correct way of creating awareness – so long as you are doing so not because you feel pressured into it.

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Setting boundaries is a learning curve and the allure of getting more likes or shares for content that has been pushed by non-disabled people to feed their curiosity can be appealing to some.

Whether you like it or not, putting yourself on the internet comes with a reasonability – no matter how big or small the following.

So, to my younger peers who might be wrestling with posting something they’re not comfortable with so their voice can be heard – just remember, whatever you put out there will essentially be there forever.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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