Making online connections with rare condition Moebius Syndrome

Alex BarkerAbilityNet Disability Consultant Alex Barker has a very rare disability called Moebius Syndrome.

In this blog, released to mark Moebius Syndrome Awareness Day 2024, he explains how technology has enabled a community of people with the same condition to come together from all corners of the world.

What is Moebius Syndrome?

I celebrated my 50th birthday last year. 

Back in 1972 when I was born the world was a very different place. I was born with an extremely rare condition (researchers estimate that the condition affects 1 in 50,000) called Moebius Syndrome. This means that I'm unable to smile or to show any facial expression. If I knew how to play poker I'd have the best "poker face" ever. I don't have all my fingers or toes either. What I do have is a loving family and they have supported me throughout my life. 

Lack of accessible information

However, one of the difficulties that my family faced back in the 1970s was that information about Moebius Syndrome was hard to come by. The Moebius Syndrome Support Group in the UK consisted of people who had children with the condition writing to each other to share information, or by having a meet-up every so often.

If you wanted to research information you had to go to a specialist library and spend hours wading through content trying to find information, and then finding a photocopier to make a copy of that info.

Online support for rare conditions

Text reads: Moebius Syndrome Awareness Every DayThere are many stories of people who have Moebius feeling lost and alone because they couldn't find anyone to share their experiences with. When I started university in 1995 the internet was still fairly basic. I decided that I would set up a website hosted on Geocities for people living with Moebius in the UK... but this platform is sadly long gone! 

I wasn't the only one setting up an online space to discuss Moebius. Slowly but surely the community developed with lots of people all around the world starting their own websites, or "Home Pages" as they used to be called. I gradually started to reach out to people that had Moebius.

I even started to reach out to a woman in Florida with the same condition. We used to make each other "mix tapes". She used to spend her summers in California and I met up with her one year. I also met people from France, Sweden and Norway with the condition. The internet was becoming so useful for people like me to connect with other people in the same situation.

Romance within the Moebius community

Two hands shaped together like a heart, with a sunset in the backgroundFast forward 15 years or so and I started chatting to another woman in the USA who had Moebius and what started off as friendship soon became much more. We got married in her family church in Lexington, North Carolina in November 2018. Our trans-Atlantic courtship got lots of coverage on the internet, and it culminated with the New York Times taking pictures at our wedding!

January 24th every year is Moebius Syndrome Awareness Day (MSAD) where people are encouraged to wear purple to raise awareness of the condition. Technology helps us to get our message out to all the corners of the world and to give people a better understanding of the condition.

Lived experience of disability is valuable in the workplace

What has my condition got to do with my work as a Disability Consultant at AbilityNet? Well, it means that I have lived experience of living with a disability. I've got a really good understanding of how difficult it can be sometimes to get my work done.

A good example is that my writing looks like a five-year-old's, but put me in front of a keyboard and I can really show my talents off. Another example is that I know what it is like to have Access to Work support. When I worked in an office I found public transport difficult to use, so Access to Work paid for a taxi to take me to and from work. Finally, I love giving presentations, and I love making atendees laugh. Quite ironic as I can't show facial expression!

I've also got a really good handle on how useful tech is for me to do my job well. I share this experience and provide information on how to you can help others in your workplace with physical disabilities in an AbilityNet training course: Don't Disable Me - Removing Physical barriers. I also run free disabilities sessions to educate community groups and charities about disability and technology.

Disabled people often have to remove physical barriers to enable them to live, study and work effectively. I’ve used technology to enable me to study at college and university and I love passing on my experience to other people so they can benefit from the same positive opportunities that I’ve had.

Further resources

Webinar playback: How technology can help people with Parkinson's

Ask Alex: Voice recognition technology

Factsheet: How to apply for an Access to Work grant