Digital diversity: Lessons from a virtual girl with Down syndrome

In early 2022, there were 200+ virtual influencers on Instagram. Only two were body positive. None had a disability.

For young people today, the virtual world is inseparable from the real world. A generation that has grown up with the internet in their pocket, it’s no secret that young people are spending more time online than ever before (on average six hours a day). They work, work out and hang out virtually.

As a charity dedicated to enriching the lives of people with Down syndrome, it was clear that Down syndrome International needed to turn their attention to enriching the digital part of their lives too. People are used to fighting for inclusion in the real world with real people, but the virtual world is desperately far behind.

You probably cringe when you hear the word ‘metaverse’ but the rise of virtual spaces has undeniably dominated the face of digital from gaming to social media. Global investment into the metaverse doubled to US$120bn in 2022. Central to this is the rise of virtual influencers on social media, pixel-perfect people designed to embody extremely conventional beauty stereotypes. They are mostly women – tall, thin, often Caucasian. All perceived ‘flaws’ are removed – no acne, stretch marks, unruly hair and definitely no disabilities. We found this deeply disappointing and frankly, depressing. How could a media platform that has the power and ability to represent the advancement of humankind totally dismiss this very present and growing segment of people?

But from that sad reality stemmed a shiny new opportunity. At the intersection of 3D design and disability lies a relatively untouched space where we could begin to build a more inclusive future. As marketers, we all have a lot to learn from the world’s first virtual influencer with Down syndrome. Everyone, meet Kami.

Kami is virtual yet authentic

Kami is a virtual girl around 18 years old. She’s bubbly, optimistic and driven. Her favourite colour is purple and she recently dyed her hair this colour (cute!). She is not “from” any one specific place and she is a mix of many different ethnicities. She has many different voices.

Kami may be virtual but she is made of over 100 real young women with Down syndrome.

It was vitally important to us that Kami is authentic. To achieve this, every part of her design and story was co-created by a collective of real young women with Down syndrome from 16 different countries.

Artificial intelligence allowed us to incorporate parts of all 100 women within Kami, without the beauty bias that a human hand would innately have.

• Machine learning combined their faces mathematically to create Kami’s face.
• Her body was made accurate to a real woman’s proportions.
• Her voice and captions are written from real women's quotes.

This collective of young women also decides where Kami should go and what she should do. We wanted Kami to not only represent these women but to “be” these women. We wanted them to be able to clearly see a part of themselves in her – in her face, voice, actions and behaviours.

By bringing together technology specialists and the disability community, we were able to invent a completely new model for running a virtual influencer. Most virtual influencers are women but the majority of their creators are men. Kami is currently the only virtual human run by a collective of the people she represents – a model that is now the case study for Meta’s ‘Ethics of Virtual Influencers’ guidebook.

How Kami rocked the digital world

Kami’s life on Instagram (@itskamisworld) has had lots of twists and turns that were completely unexpected. Our approach was to let the collective of women steer Kami’s story but leave lots of room for others in her community to contribute too. The response was genuinely surprising and Kami’s life became something we never could have planned.

Real-life global Down syndrome influencer and Gucci model Ellie Goldstien came on board as executive producer, curating Kami’s content and providing editorial direction. Ellie’s experience as a real-life influencer gave Kami’s personality a more playful and humorous tone. She made us LOL many, many times on our calls with her.

Collaborations were organically formed within Kami’s community, including:

• Painting a work of art with Down syndrome artist Charlie French
• Becoming the muse for 3D designer Sam Goodyear to create a custom 3D dress
• Launching a ‘pocket metaverse’ dedicated to Down syndrome awareness with Vogue photographer Gabriel DiSante

These collaborations allowed Kami to spotlight the talented individuals in her community from all abilities.

On the world stage, Kami appeared as the guest of honour and first virtual model with a disability at Brazil Immersive Fashion Week 2022. She collaborated with world-renowned virtual fashion house Studio Acci to launch the first virtual clothing line designed by people with Down syndrome. She was a key speaker at the Influence Day conference in Milan and she has an upcoming exhibition at digital art festival Palais Augmenté in Paris.

We are happy to say that Kami is one of 35 verified virtual influencers on Instagram and the first virtual influencer with a disability to be verified. She has garnered US$10m in earned media for Down Syndrome International and continues to create paid modelling jobs for real young women with Down syndrome.

Kami’s social media account also took on a second role, as a tool for the young women with Down syndrome to interact safely online. Many of the women in Kami’s collective expressed that they feel unsafe using social platforms on their own as they are often targeted with cyber bullying, abuse and scams. It can make simple interactions scary and disheartening. Because Kami’s account is monitored by community managers, any hurtful comments are removed.

Life lessons from Kami

• If it doesn’t exist, make it – The virtual world is the Wild West; it’s relatively new and open for us to shape it however we want. There’s no reason why we couldn’t make it a place that is even more diverse and inclusive than the real world. Our hope is that Kami inspires lots of new ideas for making the virtual world more welcoming for those with disabilities, such as a text-to-speech function with the voice of a person with Down syndrome, or a virtual room that changes shape or colour based on visual ability. Kami may be the first virtual human with a disability but we definitely don’t want her to be the last.
• Do it the hard way – Including over 100 people with Down syndrome in Kami’s creative process was not the easiest way but it was the right way. It is essential that people with disabilities are considered from the very beginning, not as an afterthought. Whenever you have your next big brief or big idea, consider who should be there to contribute. This casting is as important in front of the camera as it is behind. Think of your cast, crew, photographer, illustrator, voiceover, sound engineer, even the hand talent. Then find those people – you might have to dig deeper but they are there.
• Find your people – We want projects like Kami to be long-lasting platforms and not just a one-off campaign. Making a virtual influencer is not cheap, so doing it for a charity over a long period of time has its challenges. But we found our allies, people who were just as passionate about Kami as we are and wanted to contribute their time and talent for a good cause. Anything is possible with the right people and passion. Big hugs to all of Kami’s friends around the world who continue to help her in her mission to make the virtual world more inclusive.

What’s next in Kami’s world?

Kami’s opportunities in the virtual world are endless – from singing with virtual pop stars to dancing in a virtual party, pretty much anything can happen.

What we do know is that Kami is the start of a new era of virtual inclusivity. By merely existing in the virtual space in her original shape, Kami is already breaking down many barriers and changing the ideals of what people look like in the digital world.

Our hope is that in the future, it will be completely normal to see virtual humans with a disability exist and engage in our daily life. And that any of our human differences, complexities and diversities can be expressed in virtual spaces as well as real ones.

It has been one of the greatest pleasures of our careers to work on this project and we will forever be part of Team Kami. Go little rock star!