John Dickinson-Lilley has done it all as Britain’s premier visually impaired ski racer. He won a European Cup, was a double British Champion, and by the time he retired in 2017 he was still inside the top 10 in the world.

The 40-year-old has less than 5% sight in the central vision, at one metre at most, after starting to lose his sight at around 13 years old. He took up skiing on holiday with friends after finding that a local instructor did accessible training.

Also epileptic, Dickinson-Lilley was largely kept away from sport at school. He was not allowed to play football or rugby at his Leicestershire primary school, but did take up tennis and cricket as well as dabbling in hockey and rugby at high school. His teenage sporting exploits were halted when his sight deteriorated, and it was not until his late 20s that he began skiing.

“When I was at school, I started playing tennis,” Dickinson-Lilley recalled.

“At first I was really good, and my sight loss hadn’t been diagnosed at that point. I was probably about 13 years old. Then my parents came along to a tennis coaching session, and my mum said ‘I can’t believe we’re paying for you to be this crap’. I was missing a lot of balls, which I hadn’t been, and my mum and dad said they needed to think about whether they were going to spend the money on these lessons when they’re not really working.

“I’ve basically got tunnel vision, so I lost all my sight from the outside in and it wasn’t immediately obvious. Things like playing tennis and missing balls, walking into people, knocking stuff off the kitchen counter at home, all that was me losing my sight. Everyone just thought I was really clumsy, and it wasn’t until I was 18 or 19 that they worked out that it was actually something else. Then between the ages of 18 or so and 30, I lost 95% of my sight.

“Back in the 90s right through to the early-00s, being disabled wasn’t easy. It wasn’t set up for even thinking about inclusion. Now, inclusion is more talked about. There’s a long way to go to make sure disabled people feel fully included, but things are significantly better now though.

“If you have a conversation about it, people will get it. You’ve got clubs, investments from organisations such as SportEngland, you’ve got activists, you’ve got entire organisations whose jobs are there specifically to get more disabled people taking part in sport. Whether that’s recreation or competition, you’ve got someone who is thinking about that now and providing insight, so it’s a different world from what it was. Interestingly, I think you can almost see that reflected in parasport.

“Parasport is interesting in that you tend to get older people, the athletes tend to be older, and I think that’s a reflection on the state of society and the way that it’s set up to manage inclusion. Now, actually, if you look at my own sport of ski racing, there are 17, 18 and 19-year-olds doing it, which is a lot closer to where it falls for able-bodied people.”

Blind skiers use a guide, who skis independently and just ahead of them on the course. Headsets allow them to communicate – especially in the more technical slalom events – as skiers can reach up to 70 miles per hour.

Coverage of Paralympic sports like skiing has surged in the aftermath of the London 2012 event, which had record-breaking demand for tickets.

However, the added attention that para-athletes have been receiving have brought their own issues, according to Dicksinson-Lilley.

“Lots of para-athletes really struggle with inspiration porn,” he explained.

“If you want to be inspired by me, that’s totally fine. If you’re inspired by the fact that I was European champion, double British champion, I was in the world’s top 10, that’s fine, I worked really hard to do that. I work really hard full stop, that’s nothing to do with my disability, that’s because I work really hard.

“I had to work really hard to be an elite athlete, but it’s not inspiring for me to get out of bed and go to work each day. There’s nothing inspiring about that. Some days I don’t want to get out of bed, some days can be a bit of a nightmare, but there’s nothing special about that, it’s just part of life.

“Another thing that’s really important is that it’s OK to be a disabled person and not be an elite athlete. There’s this perception that a disabled perception can do anything if they just think hard enough. No matter how hard I think, I’m not going to stop being blind. That’s not about my mind, and it’s not why I’m an elite athlete.

“I think that probably puts a lot of disabled people off, there’s an expectation that if you are disabled and you want to play sport, you’re going to become the next Ellie Simmonds. Ellie Simmonds is amazing because she’s an amazing athlete.

“Not every disabled person is going to become an Olympian. Not every footballer is going to end up playing for Arsenal three weeks later, that’s not how it works, and that’s not how it works for elite sports on the para side either. It’s not easy, it’s hard work, it takes the same amount of discipline.

“The world needs to educate itself around disability sport and elite parasports, and let disabled people take part in sport. Do some sensible things to make sure sport is accessible. The thing that has frustrated me most when I was trying to get into ski racing, is that with the exception of one organisation ­– Disability Sport UK – there was no one there to provide me with any support or information. All of the national sporting federations for skiing didn’t have accessible website, so I couldn’t physically read the information. Lots of websites don’t have resources available in large print, so there are lots of things that you can do.

“If you want to include disabled people in your sport, ask them questions. Ask what you can do to make sure that disabled people can take part, and nine times out of 10 it’s not difficult. With a bit of thought and a bit of conversation, you can come up with some sort of solution that makes sport more inclusive. That would give you a wider talent pool, but also it makes it more fun. That’s another personality, another person playing sport, and that’s good for everyone.”

Dickinson-Lilley knew he was attracted to men from a young age, and has been with his partner for seven years. He never had to worry about coming out in the sporting world, because by the time he started skiing he had long since embraced it.

As a teenager in the 1990s though, not everyone was accepting. There was initial push back from his religious parents, although they eventually came around after a few years. But that did not stop some close family members not attending Dickinson-Lilley’s civil partnership ceremony to his former partner.

The culture on the ski racing circuit also had its issues. Dickinson-Lilley had big successes in his career, but he admits that he could have done even better if he did not have to worry about what his contemporaries thought of him.

“It was very laddish, which was incredibly challenging,” Dickinson-Lilley admitted.

“I was sitting at a dinner one evening at the hotel, and my sex life was the subject of the conversation. Everyone kind of – I hate the phrase banter, it’s a terrible word – but everyone gives each other bits of stick now and then.

“There was one athlete I remember who had a conversation with another athlete, just two places down the table from me, saying that in their view homosexuality was a behavioural thing, a choice that you make. I stepped in and called that out, and said that wasn’t right.

“When I did react, sometimes my teammates’ lack of support felt tough to handle. It was quite difficult, because my guide is an independent athlete within that team, so they were compromised with where their loyalties lied. I remember one person calling something gay, and I asked what that even means? He said he didn’t mean it like that, but if he didn’t mean it in a pejorative way, why did he use it? What does it mean, tell me what it means?

“Pretty much everybody was telling me I was overreacting, but words matter. Words do matter, words do have power. I’m not slating people, I think that’s really important. They were nice people that I liked, but there was a fundamental misunderstanding of the power of words or the power of behaviour, of actions, that come from a place of privilege.

“I think it did make a difference, because I think people did it less – or certainly they did it less around me. It was isolating, I was at an event recently organised by Sports Media LGBT+, Authentic Me, and it resonated with me so much. I know that my performance could have been better if it wasn’t for all of these moments.

“There were moments when I was training, and someone would say something or make a joke about something being gay, and some of it was really low-grade nonsense, just pathetic stuff. It’s the kind of thing actually you sometimes hear on the terraces, just ridiculous, meaningless tripe. You know what, it does have an effect. Some people will tell you to just ignore it, oh, alright then. Maybe I’ll make a joke about your mum, would that be OK? No, of course it wouldn’t.

“I think there is an interesting thing that it’s almost like there’s a hierarchy of what it’s acceptable to joke about. You can be offensive about people’s sexuality or gender, but you can’t be offensive about someone’s age. You know what, it’s amazing actually, people are far more sensitive about making a joke about someone’s age than they will be about making a joke about someone’s sexuality.”

Dickinson-Lilley sees himself as a campaigner for LGBT+ rights. As seen in his skiing days, he is not shy about calling out homophobia and he wants to see change happen. That may be one reason why he is one of the first Rainbow Laces champions.

He is one of 11 champions named by Stonewall, leading LGBT+ people in sport who are determined to make sport everyone’s game. They’ll stand up for what they believe in, working together and with Stonewall to bring the experiences of LGBT+ people in a wide range of sports to life.

Stonewall’s Rainbow Laces is a campaign that the skier feels strongly about, and is delighted to be getting more involved with.

“Rainbow Laces do terrific work,” he insisted.

“You look at where Rainbow Laces were five years ago, when it was mainly focused on football, and now it’s across all field sports. With the champions alone, you’ve got international athletes, everybody from athletics champions to racing drivers. The spectrum of talent is phenomenal.

“I heard an amazing statistic, that if you got all of the LGBT+ people who took part in the last Olympic Games together, if you just ran team LGBT+, that team would have placed in the top 20. That’s the power of LGBT+ people in sports, that’s the influence we have and the depth of our challenge. We can compete on the world stage alongside anyone else.

“If you think of the impact that discriminatory behaviour or attitudes might have on people’s sexuality or gender identity, and that might impair their performance, think about what would happen if we didn’t have to do that, it’s truly exceptional. I think the Rainbow Laces campaign is powerful, and this week you’ve seen club after club in rugby and the Premier League, the FA and others, all coming out and supporting Rainbow Laces.

“I recognise that it’s not easy, there were homophobic chants last week, and the FA has a role to play to step in and prevent that kind of stuff for sure, but the fact that the FA are standing shoulder to shoulder with the LGBT+ community through Rainbow Laces is incredible. I couldn’t have imagined it 10 years ago, so I think it’s an incredibly powerful campaign. It brings together two things in my life that really matter – my sport and my sexuality – that I choose to define myself by.”