Real Voices interview: Henrietta Spalding

Meet Henrietta, who has a facial paralysis condition

What are the symptoms of your condition?

I have Moebius syndrome. It’s caused by a lack of full development of cranial nerves, causing paralysis of the face and eye muscles.

My eyes don’t close, and they don’t move from side to side. That means I have to move my head to read and I can’t see how fast a car is coming when I cross the road. But the body is amazing, I’ve developed the most acute hearing, and I can tell how far away a car is by listening to it.

The most prominent feature is paralysis of the face: we have no expression, and have difficulty eating and speaking (my lips don’t close so there are sounds I can’t make).

Henrietta Spalding

Henrietta Spalding

What situations do you find most difficult?

None. My teenage years were harder. At school some people weren’t informed and had unhelpful behaviours. I wasn’t bullied, but I was left out. But when I got to university I was taken for who I am; I worked in the union bar and had a great time.

How do you find people react to you now?

I’m very privileged, I have a huge set of friends and I meet people on a daily basis, through work and my interests. But I do have to make a bit of an effort to put people at their ease. I’m keen they see the real Henrietta Spalding, the person I am.

How do you wish they would react?

As they do.

How do you think society treats people ‘out of the ordinary’?

People might be curious, or uncomfortable, or unsure. We live in a world where people feel easier being similar. People don’t know how they’re supposed to react to people who look a bit different: they might be uninformed or ill-equipped. They’re not often cruel, just the occasional person.

Do you think physical appearance has too much significance in modern society?

Yes I think it does. It’s unfortunate. The definition of what’s acceptable has become more and more narrow. The impact on people’s lives can be huge. It doesn’t need to be that way.

Watch a video interview with Henrietta and two other people from Changing Faces if you'd like to find out more.

About this resource

This resource was first published in ‘How We Look’ in June 2008.

Physiology, Health, infection and disease
How We Look
Education levels:
16–19, Continuing professional development