13 minute read
‘I'M DOING THIS FOR THE GREATER GOOD, TO BE A CATALYST FOR CHANGE’
From the unimaginable horror of being part of the Manchester Arena bombing, when he was left paralysed after sustaining a severed spinal cord, Martin Hibbert is using his traumatic experience to change the reality for fellow spinal cord injured people.
Here, he tells NR Times of his own experience of the lack of support and provision for people with spinal cord injury, his determination to change the everyday challenges and disadvantage they face, and why he wants to start a revolution around attitudes and perception of disability in the UK
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“I’d love to be able to go out for a meal or to a hotel with my wife without it being a military operation to make sure they have a ramp, they have disabled toilets.
“I don't want to have to give 24 hours’ notice to get on a train, I don’t want to be left on a train or a plane because assistance hasn’t come.
“And the dream is probably to live in a country where disabled people aren’t treated like third class citizens.”
Here, in a few sentences, Martin Hibbert sums up the everyday experiences of people with paralysis, for whom support is often in short supply and the challenges they face in living their lives are all too apparent. A stark reminder of the reality for people with disability, in a country where the Equality Act was introduced 13 years ago, and the vast amounts of work that clearly still need to be done.
But since sustaining spinal cord injury (SCI) six years ago in the Manchester Arena atrocity, where Martin was the closest survivor to the site of the explosion, he has seen first-hand the lack of provision for disabled people - and has dedicated himself to making positive change.
Through his iconic Martin’s Mountain challenge, which saw him become only the second paraplegic person to climb Mount Kilimanjaro and send a clear message about what is possible despite disability, he has raised well over £900,000 for the Spinal Injuries Association (SIA) - the organisation he credits with helping him rebuild his life when support from elsewhere was non-existent. His goal of £1million is now within touching distance.
Now, Martin - who has become vice president of the SIAwants to make lasting change in society, by ensuring people with SCI receive the support they need and deserve, and starting the revolution in how people view disability.
“Without starting a revolution, perceptions and attitudes don’t change,” he tells NR Times.
“When I look back at when I was injured, I didn't have >> anyone to inspire me or to make me think that I could live a normal life. I'm always very conscious about that. I’m the same person with the same brain, but now face so many more challenges every day.
“People are being told today they’re not going to walk again, they might think their life is over. I know what that’s like.
“But then I get messages from people all over the world who are in spinal units and they’ve seen my videos, they’ve seen me climbing Kilimanjaro - they see what is possible.
“It’s not going to happen overnight, but we want to change attitudes, to show what can be done. I’m proud and humbled with the support I’m receiving from all around the world, and I’m committed to making a difference for all of us.”
‘I wasn’t a person, I was a number’
Having been critically injured in the terrorist attack, Martin - who attended the Ariana Grande concert that night with daughter Eve, who continues to rebuild her life after serious brain injury - was taken to Salford Royal Hospital where he underwent 14 hours in surgery.
While thankfully his life was saved, Martin was given the devastating news that he would never walk again. After the “fantastic” care in the acute environment, he was then moved to a spinal unit. And at that point, Martin began to realise the appalling reality so many people with SCI face. Having been discharged back home after six months in hospital, Martin speaks powerfully about the lack of support.
“It was hell on earth. I had to sort everything out myself. I still had open wounds on my back and I’m having to sort out a GP, dentist, my own community support, my own benefits, I didn’t even know I was entitled to benefits,” he recalls.
“There was no help or support or basic signposting. I was left to rot. “Bearing in mind what I'd been through six months earlier, they weren’t bothered, I was treated as a number. It’s just a process of ticking a box and saying you’re done. I wasn’t treated as a human or a victim. I was very angry and it still makes me angry.”
Martin was also discharged without a suitable home to go to, with the family cottage no longer able to accommodate his needs.
“I was almost left to rot in a care home. We were actually classed as homeless by the NHS, as the home we had wasn’t accessible and couldn’t be made accessible,” he says.
“I was put into a care home for severely disabled people and people living with serious mental health problems. It was hell. We found a new house, my wife hired a van, and we moved so I could get out of there. But then there was nothing, no support.” While some mental health support was offered while Martin was in the spinal unit, he declined.
“They could never have understood what I’d been through,” he says. “When you have SCI, you’re three times more likely to have suicidal thoughts - but mental health support with a speciality in SCI seems non-existent.
“It’s so important that you have both, because without understanding the SCI aspect of it, how can the support be appropriate? I know of one person who really struggled to breathe because of their injury, and they were told by their mental health person to take deep breaths to music. How are you going to do that when you struggle to breathe, or breathe with the support of a machine?
“Having SCI is not just about not walking, there are so many other factors, unique factors, which need to be considered as part of specific SCI mental health support. This is why I am so pleased that SIA have trained counsellors who are SCI, they understand and are changing things for the better.”
Access to rehab is also a huge challenge, with well-documented pressure on NHS resources meaning those who rely on community care and cannot fund privately, face severe disadvantage.
"There are thousands of people who rely on carers, and don't have access to these amazing facilities we have in the country, which a lot of time do have space and could be used to help people with SCI access the equipment and support they need,” says Martin.
“For example, I spent six months at the Institute of Health and Performance in Manchester having rehab, all of the Manchester bombing survivors had rehab there. It’s fantastic, footballers and boxers go there, the Olympic team train there - but 75 per cent of the time, it’s empty, stood there doing nothing.
“There are similar facilities all around the country, so why can’t we use these for NHS patients to help with physio? As soon as you leave hospital, your physio drops off a cliff, at the exact point you need it most.
“If you’re in a wheelchair, you can’t just access the local gym or swimming pool, they’re not accessible. We need a whole new approach to rehab, which is going to be better for everyone in the longer term.”
The need for a revolution
Adjusting to life in a wheelchair was always going to be a difficult process - but the reality of trying to negotiate the world, or namely the UK, came as a shock to Martin.
“In travel, tourism and hospitality, it’s shocking. I think it’s worse that they’re allowed to get away with it,” he says. “It's like a military exercise if we want to go shopping, go to a restaurant, go for a weekend break on holiday. We've got to find out are there accessible rooms? Is there a lift? Are there toilets? Is there a ramp?
“We can't just rock up somewhere, and that’s wrong. We shouldn't have to do that in the UK. I'm still being told when I ring hotels that they only have one accessible room and it’s taken, or they don’t have any at all.
“I can’t even go shopping on Bond Street in London, one of the most famous streets in the country and probably the world, because it’s not accessible.
"How can that be that case?
“We have the Equality Act, but can you imagine people from the BAME community, or the LGBTQ community, being told you can’t come in here because you’re gay, or because of the colour of your skin?
"Yet that’s what we’re being told every single minute of every day and it goes under the radar.”
But while Martin continues to discover the practical realities of negotiating the UK as a disabled person, for him, the biggest challenge lies in perceptions and attitudes.
“We can put up ramps until the cows come home, but unless attitudes and perception of disability change, then we’re never going to get anywhere," he says.
“But look at what has happened in the BAME community and the gay community.
"If you look back 40 years, being homosexual was illegal in this country. If you look at America in the 1960s and what that was like for black people.
"You can’t believe that would ever happen, because things have come so far.
“Ultimately we’ve got to do the same thing, we’ve got to change attitudes and perceptions where people accept that it’s not right that disabled people can’t go to a hotel, it’s not right they can’t use a toilet in a restaurant. That’s not good enough.
“It’s going to take a long time, maybe decades, to get there.
"There’s pressure on all of us to start making the change and to stop disabled people from being treated this way, feeling like third class citizens in their own country.
“I’d love to get in the car and go away for the weekend where everything will be accessible - it sounds like a utopian island, and it’s kind of a dream, but it shouldn’t be.”
Elsewhere in the world, Martin points out, accessibility is much more commonplace and the approach to disability is much more proactive - meaning the UK, the sixth richest country in the world, has a lot of work to do. ly challenging feat for anyone, in a wheelchair sent out a clear message to the world about what was possible. And from the main motivation of breaking down boundaries came the desire to raise vital funds for the SIA, which has played such a hugely important role in Martin’s life post-injury. He chose the ambitious target of £1million pounds to help fund the charity’s vital work.
“You go to America, Australia, you never once feel disabled. I lived out in Australia for four months on my own and never felt disabled. Yet here, you are well aware you’re disabled every day,” says Martin.
“I think that follows through into everything about spinal cord injuryresearch, rehab.
“Europe are now 15 or 20 years ahead of us, America and Australia 25 to 30 years ahead of us in terms of how they're looking at neuro-physics. The way we look after spinal cord injured people hasn’t changed since the 1970s.
“I’ve seen with my own eyes what is happening in Australia, and I’ve come off my medication since I’ve been there. It’s mind boggling. I have a severed spinal cord but I got my legs to move, I was doing leg curls in the gym.
“The fundraiser was secondary, it was more about look at what somebody who is disabled and in a wheelchair can do when they've got the right help and support,” says Martin.
“It was a message to let's give everybody that help and support. Look at what we can do when we get that - we can do the impossible.
“We can show the world why we should embrace disability, let’s celebrate disability.”
And on June 9 last year, Martin - using an adapted Bowhead bike - became only the second paraplegic ever to scale Mount Kilimanjaro, with some of the team who had supported him during his recovery by his side.
Donations continue to come in, with the £1million target moving closer by the day, and the inspiration many found in Martin’s Mountain continues to spur people on in their own challenges.
His achievement has been acknowledged with Pride of Britain and Points of Light awards.
Even my spinal consultant said ‘How the hell are you doing that?’
“But in this country, we’re told we can’t do this in the NHS because there’s no research - well bloody do the research! The things that are happening around the world are leaving us so far behind, and at the minute the NHS is just closed off to it.”
Martin’s Mountain
Having seen on a daily basis how disabled people are viewed and treated by many, Martin wanted to make the ultimate statement around the ability people have with SCI.
Climbing Mount Kilimanjaro, a huge -
Alongside Martin’s epic challenge, countless people around the world took part in the #EverydayMountains initiative, which inspired them to complete their own personal ambitions, however big or small.
“It has been amazing, I’ve heard stories from all around the world, we’ve had kids completing runs in playgrounds at school to raise money, it’s been fantastic," says Martin.
"The love and support we’ve had from all corners of the world has been beyond anything I expected.
“As well as showing what’s possible when you’re in a wheelchair, it went well beyond that. It became about more than people with SCI. For someone who wants to lose weight or give up smoking, or get through their paperwork or clean out that room, that can be their mountain. "Everyone has got their own mountain to climb."
While the trek took a significant physical toll on Martin - “it probably took six months to recover, being honest” - the lasting impact has been powerful.
“Kilimanjaro was very symbolic, and people now want to talk to me, people want to listen. It has given me a voice to speak for people who feel they don’t have one,” he says.
I had no idea that wasn’t commonplace, I thought everybody got the same. When I found out that isn’t the case, I was just like ‘Oh my God’. Even that level of support isn’t consistent and so many people won’t receive it.” no fault of their own, they're blocking beds.
At his request, Martin has had two meetings with Tom Pursglove MP, Minister of State for Disabled People, Health and Work - one in Westminster and the second at the SIA headquarters, for the MP to meet staff and volunteers to understand first-hand the many challenges SCI people face.
“So what we're saying is, invest in us as a charity, and we can help.
“It will take the Government to support us, and while Tom was very interested and engaged, and I am confident things will happen, the proof is in the pudding. I know it’s not going to happen overnight, but I want it to happen.
“There is pressure that comes with that, of course, but it’s about changing things, starting that revolution. And we certainly did that, and continue to do that. I’ve got an army of troops now all around the country, and even around the world, who have seen what is possible.
“I’m very humbled by the support, it has been amazing, but we need to build on this and take people with us to make change.”
Martin’s Mission
Having become vice president of SIA, and known around the world for his extraordinary challenge and fundraising, Martin is well-placed to lead the charge for change.
Knowing all too well how little support exists, even down to basic signposting of what services are available and where to seek assistance, Martin wants to start from the lowest levels and work towards his overall ambition of making an accessible world where disabled people are properly supported. And based on his own experience, he knows the hugely important role the SIA can play in this.
“We know that of the seven people who will get a SCI every day, only three of them will get the help and support they need. As a charity, we are being referred 75 per cent maximum of these survivors, but it should be everyone and it needs to be everyone,” says Martin. “On the day I was told I’d never walk again, Gary Dawson, a peer support worker at the SIA, came to my bedside.
For Martin, he was keen to secure support for SIA’s wish for everyone in hospital with SCI to have access to the support services that they provide - and progress is being made towards this.
“I want everybody in a hospital or a major trauma centre with SCI in the UK to automatically be referred to the SIA, and I won’t stop until that happens,” says Martin.
“We’ve got spinal injury nurses, we’ve got peer support officers, we’ve got the mental health advocates, we can help with care and support packages, we can help get the right wheelchair.
“Whatever you need as a spinal cord injured person, we can help alongside our partners.
“But we hear of people who have lived with SCI for 20 years, yet they’ve never had access to the support SIA provide. How can that happen? That needs to change, and it needs to change from the earliest days.”
Nominating the SIA as the primary supporter of people with SCI will undoubtedly, in time, require the growth of the charity and its resources - something else Martin is pushing for.
“My hope is eventually we’ll be in a position where we can cater for all those with SCI, and tailor that support to what the particular person needs,” says Martin.
“The people who don’t have the support they need, they’re the ones who are ending up back in hospital with pressure sores and UTIs and, through
“As I said to him, ‘This isn’t a day trip, it isn’t a meeting where you can put a tick in a box to say you’ve met someone in a wheelchair. I’ll keep you on your toes’. And as people who know me will know, when I want to do something, I’ll do it. 100 per cent.” While there is clearly a long way to go in achieving Martin’s ultimate ambition of creating an accessible UK, his commitment to the challenge is unfaltering.
“In my role as vice president, I want to use my profile and my story for things to change. This can be a force for good, and I want it to be a catalyst for change,” he says.
“There is a long way to go, but we need to do this. It might take years, but we are making a start, making that change.
“If everybody with SCI gets the help and support they need to live a fulfilled life, then I’ll die a happy man - and that’s the goal.” @MartinHibbert