Nothing About Us Without Us | Louise Wright on the ISCOS conference

Nothing About Us Without Us | Louise Wright on the ISCOS conference

Our CEO, Louise Wright, recently attended the annual ISCOS conference in Vienna with Will Clark, a volunteer and service user with a high level injury. In her blog, she reflects on how organisations need to support everyone affected by spinal cord injury


‘Nothing about us without us’ is a helpful phrase that helps define our recent experience at the International Spinal Cord Society (ISCOS) held last month in Vienna.  By ‘our experience’ I mean that of Will Clark, a fabulous Back Up volunteer with a C4 spinal cord injury, and myself.

Over the years that I have been lucky enough to attend this interesting and informative conference, I’ve noticed two things:

  • The lack of people with spinal cord injury in attendance
  • No power chair users – anywhere!

As I listened and watched presentation after presentation, I saw plenty of graphs, pictures of the spine, photographs of the odd young person in a manual wheelchair, but there seemed to be a whole raft of people missing.  Where were the people who walk?  What about people who use a ventilator and older people?

I spoke to many organisations, like Back Up, doing fantastic work on the ground in countries like Sweden, Greece, France and Norway; but the answer was always the same.  People with high level injuries don’t want to use our services, or it’s too complicated to include people with these needs, or too expensive – or all of the above.

At Back Up, I’m proud to say we always prioritise people who are most likely to struggle to get the support they need. 

This means that if you have a spinal cord injury and you use a power chair, or have high care needs, we will go the extra mile to ensure you are properly included.  You want to go skiing? We have courses for people with all levels of injury. What If need help going back to school?  We’ll be there to help you make that transition. What if you don’t use a wheelchair and can walk? We have someone you can talk to in a similar situation.  We pride ourselves on being an organisation for everyone affected by spinal cord injury. And if we can’t provide support, who will? We need to set the standard for others to follow.

And so, our plan for someone with a high level injury to present at ISCOS was formed.  We had a false start in 2015, when our presentation wasn’t accepted. But in 2016 we got the thumbs up to present and Will Clark accepted the challenge on our behalf.

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Will keeps telling me he’s still new to the world of spinal cord injury, having had his injury in 2012.  But, he’s packed a lot in and was able to share his breadth of experience to a few hundred people on the first day of the conference.

Will talked with passion about the experience of being fully included – it made him feel like the world was his oyster and that, with creativity and some planning, he could do anything he set his mind to.

The audience, made up from similar organisations and health professionals, started to think through what inclusion could look like for them.  We’ve since been in touch with organisations in Germany, Sweden, Norway and Greece.  Will and I hope that his speech will mean that people with high level injuries are no longer left out by the very organisations that are best placed to support them across Europe and the Americas.

Will’s speech was a moving and insightful account of life with a high level injury – something I could never convey. I opened the door, but it was Will who went through it and made the difference.  Thank you Will.  Louise

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Bazza’s story: I wouldn’t change anything

Bazza’s story: I wouldn’t change anything

Barry (or ‘Bazza’, as he is known to his mates) has just been featured in Disabled Daredevils – a Channel 4 documentary following disabled people who are extreme-sports fanatics. Barry really is the heart of the show, giving the others support and advice throughout. This is no surprise given the fact that he’s a bit of a veteran who has taken on all sorts of adrenaline-fueled challenges including skiing, paragliding and sky diving.

He has certainly come a long way since his injury in 1996. Swerving to avoid a badger late at night, he crashed his car and was subsequently paralysed from the neck down.

Barry first came across Back Up in 2007 when he met one of our wheelchair skills trainers. This prompted him to go on his first Back Up multi activity course.

‘‘I was a bit scared before the first time I went away, but it really broke down barriers and opened up new opportunities for me. Back Up gave me a real zest for life and I haven’t looked back since.’’

Bazza decided that he wasn’t going to let his spinal cord injury hold him back. He became a Back Up mentor and a volunteer leading ski and multi-activity courses.  He also took on the ultimate challenge of a sky dive to raise funds for Back Up – one of his major goals after getting involved with us. In June 2008, Barry – dressed as superman – dived from a height of 12,000 feet reaching a speed of almost 100 miles per hour. He says the sky dive was one of the most amazing experiences of his life.

Barry West

Barry was chosen to be an Olympic Torchbearer in 2012, carrying the flame through his local town of Rye. Now he combines being a new dad with his upcoming career as a mouth painter.

‘‘Now I wouldn’t change anything. People find that hard to believe, but it’s true. You might be born with the use of your arms and legs, but you can still lead a fulfilling life without it.”

Sky diving is possible for people with all levels of injury. Get in touch with Kat (kat@backuptrust.org.uk) to find out more about how you could get involved.

Becky Hill Q & A: Back Up To Work

Becky Hill Q & A: Back Up To Work

This month, we’re discussing employment issues for people with a spinal cord injury. In this Q & A our Chair of Trustees, Becky Hill, discusses the Back Up To Work course, her own career and the support that is available for people considering a return to work.


How did you first become involved with Back Up?

My first contact with Back Up was in the early 90s following my injury. I was a participant on a water skiing course, and then I went on to do skiing too. I stayed in touch with Back Up after that, doing fundraising events and I became a mentor and group leader. I even became a trustee of the charity in 2001 and am now currently the Chair of Trustees. I started to help facilitate the Back Up To Work course a couple of years ago.

How did the Back Up To Work course came about?

Helen Cooke approached Back Up with the idea. Helen, who is spinal cord injured herself, runs her own disability and employment consultancy. We’d had discussions about employment services and we were very much aware that a large number of people we were seeing were not returning to work. We had our first course over 10 years ago in Canary Wharf. We were hosted by the Lehman Brothers and I was the group leader. As we’ve expanded the course over the years, I started to help facilitate so that Helen and I alternate it now between us. The courses are still hosted by our generous corporate partners, such as Allianz and KPMG, whose staff volunteer to carry out speed interviews with each of the course participants.

Why are courses like Back Up To Work so important today?

I think a lot of people will need to go back to work for financial reasons. But, for me, that’s not the be all and end all of working. There are so many other benefits that are overlooked. It gives you a chance to be sociable, a sense of self-worth and purpose – a reason to get out of bed in the morning that drives you. There’s a lot of research about the other health benefits of gainful employment too. I also think that people sometimes find it hard physically and mentally to return to work following injury. They might also have to retrain because they can’t go back to their previous job and so they need additional support and assistance.  The course is important as it gives people the skills and techniques to either return to work or find another job as well as the confidence to do so.

How has your disability affected your career?

I have never felt that my disability ever got in the way during my career. It was never a focus or real consideration. I think I did stand out though because I was the girl in the chair. But I believe it can have positive ramifications because some of the barriers you see can be overcome and reasonable adjustments put in place. There’s no reason why you can’t hold down a career alongside your non-disabled counterparts. That was the certainly the case when I worked at BT. They were positive about employing disabled people and my disability was never a consideration there. The only times it was considered was when we were going to meetings out of the office and I would sort that out myself, ensuring access wasn’t an issue.

Do you think that employers’ perceptions of disability have changed?

I think there’s much more awareness and buildings are generally more accessible. Issues like that are less of a hurdle now for people with a spinal with a spinal cord injury. I think some of the more sensitive aspects of disability may need explaining a bit more. You might need to adjust your working hours if you can’t make it in for an early start because of your routine. Things like that are perhaps less understood, but easily put in place with a bit of understanding. And generally people are open to making those changes nowadays.

A lot of people with a spinal cord injury feel they lack the support and encouragement to get back into work. What would you say to them?

I would say that there is support there, such as the Back Up To Work course. I would recommend that they come along and gain some insights about how to approach returning to work and gaining the confidence to do so. In addition, with the introduction of new MASCIP’s guidelines on vocational rehabilitation, there will be an increasing amount of support at an early stage after your injury. It’s  really important to begin a dialogue early in your rehabilitation about working again. It is possible, it is doable and it’s something you can definitely aim towards.

If you’d like to attend our Back Up To Work course in London March 7-9 2017, apply online or email Andy (andy@backuptrust.org.uk) 

Tom’s story: Returning to education

Tom’s story: Returning to education

In 2013 I had been living in China for three years studying Mandarin and Kung Fu. I literally had the best life and was ridiculously happy. I studied Chinese in the mornings, then Kung Fu in the afternoons. I filled my spare time teaching English to local kids, took some dance classes (I could pop and lock with the best of them) and trained in taekwondo in the evenings.

Then in July 2013 I fell from a second floor window and fractured my lumbar spine.  The accident left me paralysed from the waist down. Overnight I went from being a super fit individual capable of any physical activity, to being unable to move my legs. Needless to say I was fairly stunned, but I tried to hold onto my positive attitude and I was determined to make the best of things. I travelled back to the UK for rehabilitation at the National Spinal Injuries Centre at Stoke Mandeville Hospital. There I learned how to get around in a wheelchair and began the long process of trying to walk again.

For the next two years after leaving the hospital I received calls from staff at Back Up to check on my progress, helping me to feel connected and letting me know that although I was getting on with rehab on my own, there were people out there who cared and understood what I was going through.

To be honest, I can’t remember the specifics of what we talked about as I have a tendency to waffle, but it was good to have someone at the end of the phone.

In June of this year I decided to move to London to do a masters degree. I chose to go back to university as I felt that my rehabilitation had reached a point where I could get back into the real world and also cope with the pain from my injury. I was a little nervous but mostly excited, after going through my injury I figured I could handle just about anything. I really enjoy learning new things and I thought the experience would be very interesting and make me more employable!

Before the degree started, I wanted to stretch myself by working in an office environment. I immediately thought of Back Up and contacted them to do some volunteering.

It was an awesome experience. Firstly, it was rewarding as I knew that in a small way I was helping to make a difference to the lives of others with a spinal cord injury. Secondly, and rather selfishly, it was also brilliant for me: I got the benefits of establishing a new routine, going into work and chatting with colleagues (I had forgotten how much I missed office banter), testing myself to see how well my body coped with working for extended periods and generally being part of a community again. I also got to use different financial software (geeky I know, but interesting).

I had so much fun as the Back Up staff are all great people who made me feel very welcome – receiving a good luck card and round of applause on my last day was completely unexpected and very touching.

The routine, socialising, community and all other aspects of volunteering prepared me well for the next step of going back to university. My first day was a lot less nervy than I expected as I had already proven to myself that I was comfortable in new situations meeting new people. Volunteering at Back Up helped me enormously and I hope to continue helping out in the future.

If you are interesting in volunteering  at Back Up’s office, contact Kat (Katherine@backuptrust.org.uk), or Merryn (Merryn@backuptrust.org.uk). To find out about our other volunteering opportunities, click here.

Stef Cormack: Work is good for you

Stef Cormack: Work is good for you

At Back Up we’re here to support people to get the most out of life.  And for most people, work is an important part of our lives, our identity and our daily routine. Beyond the obvious benefits of increased financial independence and autonomy, decent work (whether paid or not) brings a sense of purpose, a social network, stimulation and is proven to bring enormous health benefits, both physical and psychological.

We support people to overcome the barriers to working, through our Back Up To Work service. This includes a residential course run 3 times a year that gives participants vital skills for securing work and the opportunity to discuss any concerns surrounding disability in the workplace, as well as ongoing one-to-one support and opportunities for work placements, mentoring and coaching. But we are disappointed that nationally, only around a third of people with spinal cord injury are in work. Too many people are coming out of rehabilitation believing that their spinal cord injury prevents them from working.  They struggle to envision a future where they’re employed because they don’t know about the support available to help them make that transition.

So we decided that as well as supporting people to solve their own work issues, we should also work to help prevent some of those problems in the first place. We can do this by using our expertise to support and influence the way rehabilitation is delivered.  If we get it right then someone who’s newly injured will get a chance to learn what’s possible for them, and be linked at the earliest opportunity into ongoing support to help them achieve it; even if they’re not necessarily ready to get there right at the start.

I’m a committee member of the Multidisciplinary Association of Spinal Cord Injury Professionals and was recently asked to chair the development of national guidelines on vocational rehabilitation for people with a spinal cord injury. This was an opportunity to help guide staff in spinal cord injury rehabilitation as to how best to plan and deliver their service. I was so grateful for the chance to bring together experts to agree a consensus on best practice in helping people get back to work. We have a very wide range of people across the UK and Ireland who are helping to contribute to and shape the guidelines. We are part-way through the process, aiming to launch in 2017, but it is heartening to hear that we’re already having a positive impact on spinal cord injury centres, allowing them to be ever more effective in their vital work.

Victoria Wagstaff Occupational Therapist at Pinderfields spinal centre is one of the people involved in this project:

“The guidelines development has already been helpful to us in our thinking about the vocational support we provide. We are now trying to engage people earlier to have a discussion about employment and think through their work plans. It has already proved helpful in enabling people to realise that fulfilling work is still possible for them, or exploring other options that they may not, previously, have considered.”

In our Back Up to Work survey last year, a third of people told us they did not receive any support in returning to work after their injury. I hope that MASCIP’s new guidelines will support collaborative efforts of colleagues across the sector and start to change this trend, ensuring that all newly spinal cord injured people receive the support they need to start their journey back into employment.

For more information about the new guidelines for vocational rehabilitation, contact Stef (Stef@backuptrust.org.uk).

Alex’s story: My journey into employment

Alex’s story: My journey into employment

In 2011 I was studying economics at the University of Manchester. Between my second and third year at university I attempted to cycle from London to Croatia. I was cycling back from a food shop when I lost control of my bike. I fell off and broke my back. The accident compressed my spinal cord at the T10 level, leaving me without feeling from the waist down. It was a life-changing experience, but I always remember feeling quite positive about my situation whilst I was in hospital. The staff members were so welcoming and happy to answer any questions I had about life in a wheelchair.

I am unusual in the sense that my lowest point wasn’t when I broke my back, but instead it was after I finished my degree when I spent a year unsuccessfully looking for work. During this time I felt lost and unsure what to do in life.

I was sort of meandering through it. One day, I came across a post from Back Up on social media asking for volunteers. I made contact with the team and started going to the office a couple of times each week to work with different teams and get a taste of working life.

Shortly after I agreed to go on the Back Up To Work course that was being run at the Savills head office in London. But the closer the course got the more reluctant I was to attend. I didn’t think I needed to go on a course and was pretty sceptical about the whole thing. I didn’t realise how much there was to learn about taking interviews, both in how to answer questions about yourself and what the interviewers are trying to get from you.

We also discussed what adjustments employers can make for you as a disabled employee. I was surprised to hear how willing some employers were to adapt the workplace for staff. It sounded like some of them would go above and beyond for their employees. The difficult part was feeling confident enough to speak to your employer about what your need. These changes could be anything as small as having a higher desk to be able to fit your legs under, to much larger projects like installing automatic doors. It was quite encouraging to hear about this and reassuring for when I eventually did find employment.

I went home from the two day Back Up to Work course relieved that I had taken part. I was now much more confident about getting a job and I had a better idea as to how I was going to achieve this.

After I finished the course, Back Up offered me a part time role as an Individual Giving Fundraiser. Working at Back Up gave me regular office experience as well as more responsibilities. The longer I worked at Back Up, the wider range of roles I was able to take on and the more confidence I gained. Working in different areas allowed me to realise what I enjoyed more. I found I enjoyed working with numbers, analysing what we sent out to try and tailor the mailings better. I liked the problem solving aspect of it.

Working, even part time, allowed me to have structure in my life. I had more self-worth, and I was going out and socialising more with colleagues. The benefits of work spilled over to the rest of my life. During my time at Back Up, I also did some work experience at Savills. A year later, out of the blue I received an email from their finance team. They said they were impressed with the work I had performed the year before and asked if I wanted to go in to speak to them about a role that had opened up.

I have now been working in the Savills finance team for just over a month. I came out of university three years ago, not knowing where to turn. I was applying for jobs but not hearing anything back. I wasn’t happy. It was only once I started volunteering at Back Up that this changed. Without the initial help from Back Up I would probably be at a dead end in life, not know what to do next, not knowing if I could even do anything. Back Up showed me the possibilities.

Places are still available on our Back Up to Work course in Manchester 16-18 November and in London in March 2017. You can apply online or call Andy on 020 8875 6729.