Ausnew Home Care | Young people living with disability share experiences and create communities through social media

Young people living with disability share experiences and create communities through social media

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Logan Kelble posts dance videos on TikTok and bold, colourful fashion looks on Instagram – often with their feeding tube on full display.

It all started because Logan was frustrated by what they felt were misperceptions of people with disabilities. 

A person stands in a kitchen holding her feeding tubes. Ausnew Home Care, NDIS registered provider, My Aged Care
Logan Kelble takes four hours every day to prepare fluids and medications through their feeding tube. (Reuters: Magali Druscovich)

Logan, a 22-year-old living in the US state of West Virginia who uses they/them pronouns, shares glimpses of their life with a feeding tube and Ehlers-Danlos Syndrome (EDS). 

EDS is a rare disorder that affects connective tissue and causes chronic pain for Logan. Their social media has been a way to show the world that people with illnesses or disabilities are not defined by their conditions.

A person lays on their ed next to all her medication.
Logan has a daily schedule adjusted to the eight hours a day they spend preparing and taking their medications and resting.(Reuters: Magali Druscovich)

"I started the accounts just honestly to make friends, because I didn't know anybody who had what I had," they said.

"People often will treat me differently or feel sorry for me, or almost pity me because I have a feeding tube.

"Disabled people are not physically the same, but mentally, we are just as capable of being complex and intelligent people."

Logan and Nicole Spencer, a medical student who also lives with EDS, are among a number of young people using social media to fight misperceptions of disabilities and talk frankly about their mental and physical health.

Their use of social media is especially poignant at a time when social media companies are reckoning with backlash from lawmakers, health experts and even their own users, who say apps like Instagram and TikTok encourage people to post glossy highlights of their lives, leading to lower self-esteem among young users.

For example, Facebook, which has since renamed itself Meta Platforms, was the centre of controversy last year when whistleblower Frances Haugen leaked documents that she said showed Facebook knew Instagram was harming some teens' self-image, but failed to address the problem.

A person adjusts feeding tubes in their stomach with their hands.
Logan Kelble has been open on social media about what it is like to live with a disability. (Reuters: Magali Druscovich )

The company said in response that the documents were used to paint a "false picture".

According to Jacqueline Sperling, a clinical psychologist who works with McLean Hospital in Massachusetts, the key for users is to avoid mindlessly scrolling social media feeds and passively consuming content.

A phone sits in a tripod showing a woman smiling while shooting a video.
Nicole Spencer shares the journey of her medical condition on Instagram. (Reuters: Magali Druscovich)

"When you're scrolling through the newsfeed or other people's posts, that creates an opportunity for comparison when you may notice someone else has more likes," she said.

Social media can be rewarding when used to facilitate real connections, like making plans to meet and spend time together, Dr Sperling said.

A woman and a dog sit on a wooden bench.
Nicole Spencer's support dog Tara is trained to lick Nicole if she passes out and to detect changes in her heart rate.(Reuters: Magali Druscovich)

Translating online scrolling into real-world impact has come naturally to Nicole, a 24-year-old medical student at SUNY Upstate Medical University.

She was diagnosed with EDS and postural orthostatic tachycardia syndrome (POTS), which affects blood flow and leads to low energy.

Nicole has packed and shipped more than 400 personalised care packages to kids and young adults with chronic illnesses through an Instagram page she oversees called Potsie Packs, which is funded by donations.

Typical items in the care packages might include electrolyte drink mixes or compression socks.

But they also include fun items like stickers or tube tape with colourful patterns, which can be used to tape feeding tubes in place.

A woman sits on a bed with her arm out while being treated by a medical professional.
Nicole Spencer has weekly IV infusion sessions to help prevent her from fainting, tachycardia and vitamin deficiencies.(Reuters: Magali Druscovich)

Nicole said recipients told her the packages had helped them feel accepted and that they're "part of this community now."

Still, the darker side of social media has at times reared its head.

Strangers on TikTok and Reddit have criticised Logan's appearance or accused them of fabricating their illness and using fake stick-on tubes.

"It's absurd," Logan said. "I just block them and move on."

With chronic conditions that make it difficult to travel or leave the house for long periods of time, the apps have helped both Logan and Nicole form friendships with people in different corners of the US.

Two people and a dog sit on the floor while adjusting medical equipment.
Logan Kelble fixes their fluid pump while their partner, Gabe Urbina helps. (Reuters: Magali Druscovich )

What began as direct messages on Instagram eventually became near-daily FaceTime calls between Logan and three friends.

Forming a connection with the friends, all of whom also live with a chronic illness or disability, has helped Logan move past difficult times.

A woman wipes a tear from another woman's face.
Nicole Spencer's mum Denise worries her daughter won't be able to fulfil her dream of becoming a doctor.(Reuters: Magali Druscovich)

"They genuinely saved my life several times," Logan said.

Some followers have also helped support Logan by purchasing items through an Amazon wish list or sending donations.

Nicole has lost her childhood best friend to cancer and is living with her own chronic illness. 

Her plan after medical school is to become a paediatrician and work with children and teens as a doctor who can relate to them.

"Through all of the experiences that I've had, through being sick myself or seeing my friends go through much more challenging illnesses … if I could make one kid feel a little less alone, that would be my dream," she said.

Source: ABC

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