Nikki Lilly Christou was invited to give a speech at the UN on Monday 10 March 2025.
As well as being the founder of The Butterfly AVM Charity, she is also the Patron of Face Equality International. Nikki spoke to the United Nations Human Rights Council at their annual interactive debate on the rights of persons with disabilities. The theme for 2025 was, digital and assistive technologies, countering cyberbullying, and digital inclusion.
Nikki, 20, has been a regular online presence since the age of eight, after receiving a life-changing diagnosis of arteriovenous malformation affecting her face, two years earlier.
Speaking about how the internet has carved out a new space for cyberbullying and online hatred, Nikki insisted that it could also be a “lifeline” for people with visible differences.
“It gave me connections which I could pursue from a hospital bed and took my mind off the realities I was facing,” she said of her campaigning work on social media, aimed at helping others who live with rare and complex medical conditions.
As a child, one in five comments targeted her appearance; some called her “a monster and a reason to use contraception”, she told the Council.
That figure rose “drastically” as she got older, Nikki continued, urging policymakers and companies to shield others like her from similar abuse.
She called on social media platforms to include people with disabilities in technology development and to implement faster report processes to filter content before “millions have already seen it.”
The problem lies not only with social media platforms, but with institutions too, Nikki reminded the Council’s 47 Member States.
As cutting-edge facial recognition tools break new ground, “technology is failing our community”, the digital creator and television presenter maintained.
This facial recognition software – often fails to recognise “the extreme social barriers” encountered by those with facial differences on a day-to-day level, she continued.
Such barriers include accessing banking apps, applying for jobs or obtaining identity documents, because facial-recognition technology does not recognize her face, she explained.
Nikki welcomed the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and issued a direct appeal to Council members who “have the power to make the human rights of people with visible differences visible at last. This means investment in accessible digital systems which treat all faces equally, stronger platform accountability, and inclusive policies to ensure that everyone can contribute to society equitably.
“It is time that we are heard as well as seen.”
You can listen to Nikki’s full speech by visiting https://youtu.be/LMqxKGz16cs?si=kwBrevv7_cnuqwNV
Nikki Lilly Christou gives a speech on cyberbullying against persons with disabilities at the UNHRC
