Wheels of a revolution

“IF you want your lover’s name tattooed on your false leg, we will be able to arrange that for you. I would think carefully though, because legs are expensive.”

Louis Speight is the man speaking, and behind the flippancy he has an aim: To change the world. The 24-year-old has a vision of a better society and, just to be clear, it really does involve inscribing prosthetics, should that be his client’s wish.

But it is much more than that. Louis, from Doncaster but based in Leeds, wants to completely alter the way we think about disabled people. And he wants to start by getting rid of the concept and, ultimately, the word “disabled”. “Disability as an idea is dead, it’s time we moved on,” he says.

Louis says flatly there is no such thing, and no such group of people. We are all equal individuals on a scale of needs. “There are eleven million people classified as disabled in the UK but really that’s not true. There are many more subtleties to what we are talking about than that. Some of us have additional needs to help us take our place as a useful member of society – and we all have changing needs as we go through life.”

Louis believes this passionately and he talks with insight, humour and knowledge about his subject.

You might, though, be thinking it’s all a bit airy-fairy. But Louis has put his money where his mouth is and has started an online business called EthosDisability.com. He launched it at the end of 2014 with the help of a £20,000 grant from the Bradford Business Enterprise Fund so it is fledgling, but already the signs are that it will succeed.

His mission is to provide the practical help and advice that underpins his vision of everyone being able to contribute to and enjoy the world.

Hence that tattooist. Louis is tracking down the best in the art of hydrographic dipping, which is how you would get your lover’s name on your false limb, or any other word or image you fancy.

After all, prosthetics have undergone a revolution, being transformed from the ugly and cumbersome into objects of sleek and high-tech beauty.

That’s just one tiny aspect. Ethos Disability is a two-tier service. Users can buy from the shop in the usual way, choosing from all manner of aids, equipment, services and even tailor-made holidays. To make sure he is selling the right things, Louis has reviewers working for him to provide feedback.

Or, at no extra cost a client can become a registered user and receive a bespoke service: They say what they are looking for and Ethos Disability will do the research for them.

Louis plans to build up a vital body of information this way that will allow them to undertake research for the NHS and local authorities. It’s working already, we get new registered users every day. “It’s all about information and drilling down into the specifics. A lot of work goes into living with a condition.”

In the midst of all this, there is no doubt there is money to be made. The disabled consumer market was worth £80bn in the UK in 2012, mainly because the right equipment is crucial. Take Louis’ wheelchair as an example.

It cost him £2,650, will last about four years, and is key to his life – and not just because it allows him to get around.

“Your chair is a statement, it is much more important than a car, your clothes, your shoes. If a chair fits you, you can sit tall, so you command some authority, and that stops people doing that thing of talking to the person with you, rather than you. And it’s important that it looks nice. The whole package is really important.”

So Louis’s chair has a back as low as can be which means he can turn in it freely. It also forces him to use his stomach and back muscles and allows him to dance in it when the mood takes him.

But a wheelchair is also a very personal item and what suits one person will not suit another. “If you have no stomach muscles, for instance, then my chair would not be the best fit for you, but we will recommend the right one.”

A clue to Louis’ character is that his chair also has no handles at the back, so it cannot be pushed by anyone else - Louis refused to have them beyond the age of 15. “I was cocky, but it helped me cope with my situation.”

His situation is that Louis was born with cerebral palsy affecting all four limbs and partial sight, after having a bleed in the brain while still in the womb.

He is the eldest of three children and they are a close family, all still living under the same roof.

Louis has nothing but praise for his parents Ian, who works for Doncaster Council, and mum Janine, but says his childhood was not great. “I was bullied at school, and my teachers thought I was stupid. It was a bad experience.”

Louis was saved by two things: Wheelchair racing and university. At the age of 15 he discovered the racing and went on to become a champion – he has held the European record in distances from 100-800 metres.

Probably more importantly, the sport changed him physically, making him much stronger. “At 15 I was four feet eleven inches tall and weighed five stones, and it was an achievement to get me to five stones. If I had not done the racing I would not be in the physical shape I am.” Now, he is five feet six inches and around eleven stones with lots of muscle.

The sport world for the disabled is a complex one, though, in terms of competition categories, and Louis may not race in major competition again, though he is still training. But university changed his life even more. Louis did a sports science degree at the then Leeds Metropolitan University and found real friends, and confidence. “Six years ago, if you had told me I was going to do what I am doing now, I would have laughed. It wouldn’t have seemed possible to me. I met people who helped me push boundaries.”

If it all sounds a bit warm and fuzzy, Louis is keen to point out that life isn’t. “If you believe in true equality then you have to take the bad as well. Life can be tough and you have to be willing to take that. I am in pain probably every day but I manage it without medication. I do a lot of yoga and pilates.”

Basically, Louis doesn’t want the disabled to be cosseted victims, he wants them to aim higher. “A lot of disabled people don’t have good role models. They spend a lot of time in a medical environment. If the only role models you ever see are not able to look after themselves it doesn’t set your aspirations very high. We want to put different role models out there.”

He feels the desire to be active is a universal thing, but this idea still has to take hold in certain areas.

“As a society we need to have this conversation. I want to make things better for the next group of people to come along, because growing up for me was hard.”