British actor and disability rights campaigner Adam Pearson, who has neurofibromatosis, said he started wearing a face covering in supermarkets despite his medical exemption “just to avoid having to justify myself to strangers”.
The 35-year-old, who appeared alongside Scarlett Johansson in the 2013 film Under The Skin, has the genetic condition which has left his face covered in non-cancerous tumours.
He said that people started to challenge him for not wearing a face covering after they were made mandatory in shops and supermarkets in England in July.
“I say I have an exemption, which should be the end of the conversation, but then they go ‘why?’ and it’s like ‘oh mate, how long have you got, seriously’,” said Mr Pearson, who has worked in production roles on TV shows including Channel 4’s The Undateables.
“Eventually I started wearing one just to avoid having to justify myself to strangers.”
Mr Pearson, who lives with his parents in Croydon, was speaking ahead of an appearance at the RAREfest20 virtual festival on November 28.
He will host a panel talk at the event, which aims to challenge perceptions about rare disease, showcase science and give a voice to patients.
Asked if wearing a face covering made it more difficult for him to breathe, Mr Pearson said: “You get used to it, anyone can get used to anything. I’m fine wearing it now.”
“These are weird times for everyone so I’m not going to say that it’s a hostile act of discrimination, but it’s all just really strange.
“There may be an element of because of my condition, but in the main I just think it’s because people are on edge and no-one knows whether they’re coming or going.”
He went on: “No-one knows more about a rare condition than the person who’s living with it, so listen to them.
“It’s just tiresome, having the same conversation with people over and over.
“Listen to disabled people and be kind to each other.
“It’s a strange time and kindness costs nothing but means the world.”
Jo Balfour, organiser of RAREfest20, said this year’s festival will be held entirely online and is “ultimately about, and for, and with the patients that we’re championing”.
She said there will be 35 speakers, 25 virtual exhibition stands and people from 25 countries plan to attend.
See www.camraredisease.org/rarefest20/ for more details.