Oliver’s Blog

My name is Oliver Bromley. I have Neurofibromatosis Type 1, this results in the formation of mostly benign tumours forming on the nerve endings, these present as little subcutaneous bumps under the skin. Sometimes, as was the case with me, larger plexi-form tumours develop and these result in gross disfigurement. We now call this visible or facial difference.

Those with a visible or facial difference experience a lot of discrimination, curious glances, and outright abuse from others. I have experienced awful treatment because of how I look. However, I have never allowed these experiences to make me bitter, and I hope to use this platform to inspire and motivate others living with NF, to help educate the wider public about NF, and hopefully help campaign and raise much needed funds for Nerve Tumours UK.

Living with NF is incredibly hard at times. I have had multiple major and minor surgeries, especially in the last few years, this causes untold stress on my family and I. It affects my work, my mental health and is always challenging.

I wanted to share two short stories to highlight some of the challenges that people with NF and visible differences face. 

Story One

"Unfortunately, after careful consideration, we are unable to offer you a position within our organisation. We thoroughly enjoyed meeting you, and we think that although there is a very strong match between your experience and our requirements, you arrived early for your interview, and we believe that this shows very poor time management. We have therefore decided on this basis alone not to progress to the next round of the recruitment process". I took a step back, I couldn't believe what I had heard. It occurred to me on my tube ride home, that citing poor time management was clearly a convenient excuse and that the recruiter had been uncomfortable with how I look. Covert discrimination or so called micro-aggressions have been quite a common experience for me. You are told by others to "shake it off" or "be the better person." Mostly, that is sage advice, but it doesn't always take the sting out of it. 

I would like to see things improve for people with NF. Part of the problem is that as a society we have yet to normalise visible differences. There has been very little representation in the mainstream media to date, so people are curious, and they stare.

When we know better, we do better, and I am grateful for charities such as Nerve Tumours UK who are doing fantastic work to address this and challenge the stigma.

Story Two

"There have been complaints about you, please leave!" "Pardon?", I replied. "There have been complaints about you, you are scaring the customers, please leave!". Earlier this year, whilst an inpatient at Kings Hospital, I had grown tired of hospital food, and decided to go buy some lunch at a local eatery. I was turned away. The restaurant felt uncomfortable with my disability.

This time, my story managed to garner attention from national and international media outlets. I started appearing on TV and radio programmes and I was able to share my story, I could speak about life with NF, I could challenge the hospitality industry to do better. I was overwhelmed by the outpouring of support which I received in the form of letters and messages from all over the world. I hope we can build on this momentum and encourage people to do better, to be kind to others with NF, and encourage more allies for the community which I represent.

What can someone do when they see someone who doesn't look like them? Firstly, do not stare. This may seem obvious for some, but it still amazes me that not everyone has received that memo (as it were). I realise that most people are just curious, but it doesn't always help to be reminded on a daily basis that you look different. 

Secondly, if curious, and if appropriate, do ask questions once rapport has been established. Most people with NF are experts on their condition and who better to ask than them. Education is key. I do not think it is appropriate to go up to a stranger and ask "what happened to your eye?", but if you have established a relationship of sorts with someone, say for example a work colleage, then do ask, but only when the time is right. Sharing information is the only way we are going to get to a place where disability is normalised and the stigma is reduced. 

People often ask me how I stay so positive and motivated. Well, I can say this is because of my strong faith, which grounds me, aswell as an incredibly supportive family and support network. I am grateful to all the incredible specialists in the NHS who have supported me these last few years and to charities such as Nerve Tumours UK, who tirelessly campaign for people like me, and to everyone that's reached out with messages of hope and encouragement. If I had to pick an enduring message to everyone it would be this, "be kind".

Oliver's story in the News: National and International Support

Man with disfigurement was told to ‘leave’ a restaurant due to his physical appearance

"I am very grateful for all the media attention, not just because it was fun being part of such an exciting industry and meeting some renowned journalists; it was a totally surreal experience. I am particularly grateful to Isabel Ramirez at the Southwark Newspaper who first rallied to my side and advocated for me. I would also like to mention the fantastic Sarah Jane at Sky News.  All of these individuals were extremely kind to me, and took a real interest in the communities I represent. I have also had the great pleasure of being part of the PDA podcast. I hope that my story will lead to increasing acceptance and stop the injustice and discrimination towards everyone who has a visible difference."

Here are some of the links: Watch the coverage and see all the positive comments by the public:

Southwark News

BBC UK

Daily Mail Online

New York Post

Bored Panda 

Metro Online

Sky News

Understand Neurodiversity - PDA Dad UK

Mirror Online

Yahoo News