It’s human nature to make assumptions about people based on their appearance. We’re all susceptible to unconscious bias; a product of our environment and our life experiences. As someone who has been a wheelchair user for 26 years, I have been on the receiving end of people’s negative perceptions about me and the quality of my life. Age and time make these experiences more tolerable, but they don’t pass without at least a glimmer of anger or frustration.

Prior to sustaining a spinal cord injury (SCI), I have no doubt I viewed a wheelchair as disabling. Using one would make me less capable of doing the things I enjoyed doing as an able-bodied person, it would undoubtedly make life harder.

Following my accident, I had to accept the use of a wheelchair. I was completely paralysed from the chest down and unable to walk; the alternative was to remain in bed. Suddenly the wheelchair became a tool of enablement, granting me the opportunity to mobilise, to get off the ward, out of the hospital, back into society. And whilst the use of a wheelchair in the early days (weeks and months) came with a crippling self-consciousness and battle with self-image and esteem, I had no choice. Use a wheelchair or stay in bed.

I now view my wheelchair as an enabler, a brilliant tool to help me live my best life. My anxiety about self-image has mellowed over the years, and I’ve come to realise that the people who matter see far beyond the wheelchair and the disability. However, my perception of self, or of other wheelchair users is based on personal insight and experience, something the majority of the population don’t have. Despite most societies and environments becoming more accepting of wheelchairs, seeing someone using one is still relatively rare as a ratio of the general population. A wheelchair represents the fact that a person has something wrong with them, they are ‘less able’ than everyone else. Used worldwide, the symbol of disability is the wheelchair, so why would someone ever choose to use one if they didn’t ‘have’ to?

My work with the Spinal Injuries Association (SIA) enabled me to engage with lots of people affected by spinal cord injury, covering a wide spectrum of disability, and whilst SIA is there to support anyone affected by SCI, the overwhelming majority of people we supported during my tenure were wheelchair users.

Since starting work with JMW last year, I’ve had more interaction with spinal cord injured people who don’t use a wheelchair than those that do. The majority of whom are affected by Cauda Equina Syndrome (CES), a condition that occurs when the bundle of nerves at the base of the spinal cord are damaged. and it has granted an insight into the unique challenges and dilemmas this group of people face.

Common, yet unseen consequences of spinal cord injury include neuropathic pain, muscle spasm and fatigue. For those with incomplete injuries like CES, who retain an ability to walk, doing so can have severe repercussions that can result in prolonged periods of bedrest, exhausted and struggling with spasm and pain. Yet, for many, retaining the ability to walk, regardless of the consequences of doing so, remains a non-negotiable when it comes to the way they mobilise. Walking or using a wheelchair isn’t a ‘choice’ most people with incomplete injuries are given during rehabilitation, if you can walk you’re encouraged to do so, regardless of the impact.

Coupled with the negative perception of wheelchair use, an internal battle often wages to not to let a spinal cord injury ‘beat you’. Accepting the use of a wheelchair when you have an ability to walk can be misconstrued as an admission of defeat, that somehow, you’re not committed or strong enough. Rather than an admission of weakness or defeat, ‘choosing’ to use a wheelchair should rather be perceived as an incredibly brave decision that can have a hugely positive impact on a person’s life.

I recently met with ‘Philip’ and ‘Sheryl’ (names changed), both of whom sustained incomplete spinal cord injuries due to cauda equina syndrome, to discuss their respective journeys to wheelchair use following injury.

How has your injury impacted you physically?

Pete - Prior to my injury I was a super fit mountain biker and road cyclist, and regularly competed in challenging endurance events. My injury has deprived me of a significant amount of power in my legs and I suffer with disabling fatigue after any exertion. While I felt I was making a strong recovery after the injury, (I climbed Snowdon and walked a marathon a matter of months after my op) Since then I have regressed to the point where I am only able to walk 20 metres with a stick. 

Suzanne - Initially I could walk a little with a ‘dressage’ left leg. I then used a walking stick then a four-wheel walker. Walking is neurologically and physically exhausting. I need to pace everything that I do due to associated fatigue.

How important was retaining the ability to walk after your injury?

Pete – It was of paramount importance. My injury occurred through a simple action (bending over to pick up a pair of shoes!), it didn’t feel right that the consequences should be so severe, I felt entitled to an ability to walk.

Suzanne - It was important to me to get back to my former self, I tried really hard with physio and was dedicated to the cause. I needed to move and be independent and be a mum. It was also important because I didn’t know there was an alternative until 12 months after my injury when I discovered people like me were using wheelchairs.

Does walking have a negative impact on your quality of life?

Suzanne - Walking is exhausting because I need to concentrate and really take notice of the environment. Sometimes I can step down a kerb in a fluid motion, other times I need support all the time. I cannot walk very far or often e.g. only one aisle of our small supermarket.

Pete - While I can physically stand and put one foot in front of the other, the pain of doing so becomes unbearable after wobbling along for 20 metres. On the occasions that I have tried to test myself and walk further, I end up in extreme pain and massively fatigued for days afterwards.

When did you first consider using a wheelchair to mobilise?

Suzanne - I was on an online course with a spinal charity called Back Up. I discovered that it’s not uncommon for people with an incomplete injury to use a wheelchair. Now I have an active, lightweight wheelchair which I use when I’m out and about. I say use, but actually it’s an extension of me now.

Pete - I attended an event in London alongside another SCI person who was a permanent wheelchair user. We travelled to the event and back to Euston and had a beer together. I was exhausted and wiped out, while he was whizzing along in his chair. A couple of weeks later I was talking with someone else who has CES, and they laid it out quite simply for me – if you use a chair you can get out in the world without it being exhausting, and save your energy to put into things that are more fulfilling than picking up a few bits from the supermarket. Very wise words! 

What reservations did you have about using a wheelchair to mobilise?

Pete - Like a lot of people with incomplete spinal injuries, there was an element of not feeling like I deserved or could justify a mobility aid, after all I can still walk. I also worried about other people’s perceptions, wondering what people might think as they watch me put my chair in the boot of the car then walk to the driver’s side.

Suzanne - I didn’t want to be pushed or to rely on my son/friends to lift my wheelchair in and out of my car. I was adamant that a wheelchair would enable me to be independent so it needed to be an active one – one which I could independently use and lift in and out of the car by myself. My first wheelchair was big and bulky, it actually made me feel more trapped at home because, I now had the means but not the strength.

What was the process of choosing your wheelchair?

Pete - First I bought a cheap folding chair. I just needed to know if it really would make any difference. It really did! Then I began looking for better quality chairs, I visited my local mobility specialist and tried out a couple of demo chairs. As I'm fairly average height and build, one of the demo chairs was pretty much the right size, so I was able to purchase it at a discount. 

Suzanne - I was fatigued and mentally drained trying to cope with a life changing injury. I got referred to wheelchair services and tried various chairs including an electric. After being given the heavy, bulky chair that I couldn’t really manoeuvre, I explained that I wanted an active chair, I had done research so knew what to ask for and why. I had also spoken to my OT at the spinal unit about it. They eventually agreed to provide me with an active, lightweight chair!

When do you use your wheelchair?

Pete - My simple rule is that I will use my stick to get from the car to the counter to pay for petrol, anything further I use my chair. I use my chair around the supermarket, to visit high street shops, I've travelled to London on the train in it and I use it for exercise, I've done 5 triathlons using it!!!

Suzanne – I use it every time I go out, it’s the only way I mobilise out of the house.

What impact has using a wheelchair had on your quality of life?

Pete - My chair has made a huge improvement to my quality of life. I'm able to get out and about without the fatigue that would usually follow. I can also have a conversation with my daughter or friends while I'm moving, talking and walking at the same time just isn’t possible.

Suzanne – Within a week of my chair arriving, I had arranged lunches out, shopping trips, beach walks and holidays. It’s enabled me to do so much, even to the point that in July last year I was one of 12 wheelchair users to climb Yr Wyddfa with The Back Up Trust. It has been truly liberating!

How has your opinion of wheelchair use changed?

Pete - I now feel empowered by my chair. I know that I am strong and determined and my chair is an extension of this. When I'm in my chair I am very conscious that I am out of the house and living my life.

Suzanne – I don’t think it has. I always knew it was what I needed to enable me to lead a fulfilled life.

Do you have any advice for others with CES or incomplete spinal cord injuries who find walking difficult?

Pete - My advice is simple, "Get a chair and go and do stuff!!!"

Suzanne - This is a tricky one to answer because everyone is different. I would say if pain, fatigue and reduced physical abilities mean that your world has shrunk, be open to try equipment to support you to live your life again!