An impossible situation: Transitioning from an active chair to power-chair when renting

By R.F.Hunt, a freelance journalist, columnist and author who lives with spinal cord injuries

Last year, one of the district nurses referred me to the frailty service. With an objective eye on my situation, this team were able to suggest new options and sent off various referrals.

One was to the wheelchair services for a new wheelchair cushion.

When the assessor arrived, he seemed a lot more concerned about my spinal-cord (SCI) related kyphosis. But when the member of the wheelchair team was due to come following this assessment, I was still under the impression they were going to be bringing a cushion.

Instead, the wheelchair team staff member told me the assessment had revealed a need to transition from my active chair to a power wheelchair (powerchair) due to the deterioration of my back.

I was told, such a chair would help my pain as well as my ability to swallow. I could ‘tilt’ it – taking pressure off my back as well as my long-standing neuropathic sore.

Finally, a powerchair could help me become more independent.

It sounded tempting – especially the last point, but surely a powerchair would be too big for the size of the flat. Also, with carers only with me for part of the day, I wondered how I would cope.

I was told the chair was relatively small and I would be able to carry out any jobs I needed to do.

The final decision was with my GP and optician.

I thought my GP would kick-up a fuss given the number of opiates and other heavy-duty drugs I’m on, but it was my lazy-right eye that was the problem, meaning the optician couldn’t sign-off for outdoor travel.

If I couldn’t use the chair outside, what happened to independence? And if there was danger of knocking down pedestrians, what about knocking into walls and doors?

About three months following these assessments, the powerchair arrived and was deposited by the delivery staff in my hall.  I was so scared; I didn’t even try to move it.

Thankfully, someone from the wheelchair team arrived the next day. I thought he was meant to be helping me use this powerchair in my flat.

But ironically, he said there was ‘no space’ indoors, so took me out to the car park near my flat for practise learning the basic functions of the chair.

Even though I asked for further ‘indoors’ training it never did materialise. Instead, the message I was told time and again was practice would make it easier to manage.

The problem I was facing was I live in a privately rented property. Although my landlord understood that this chair was causing damage, it still made me upset.

I wondered what would happen if my landlord wasn’t as understanding. Would these people not get the benefit of these powerchairs simply because they were renting?

I know for many simply being able to use an active chair can be problematic when ‘accessible’ properties are not accessible, with doorways too narrow for the right wheelchair.  That means any transition to a powerchair would be out of the question.

Accessibility so that those with spinal-cord injuries can use any equipment, whether that be powerchairs and/or active chairs is an issue the Spinal Injuries Association* have been campaigning on.

They say: “We hear all too often of people living in unsuitable homes, where doorways and rooms are too small to fit their wheelchairs.

“With 400,000 wheelchair users currently living in unsuitable homes, and long waiting lists, the need for fully adapted housing is urgent.

“A home is the foundation of our lives, and we all should be able to live in a home that benefits our health and wellbeing.

“That is why Spinal Injuries Association is calling on the government to pledge 150,000 wheelchair-accessible homes by 2029, to allow people to live an independent and fulfilled life in a home that accommodates whatever equipment they may need.”

There seemed to be a lack of media coverage on the topic of powerchairs.  But I did recall that award-winning journalist, Mel Reid had mentioned it in the back of her memoir* The World I Fell Out Of.

This was the part of the book titled ‘specialist spinal-notes’ where she passed on advice due to what she had found-out since sustaining her SCI.

Number 6 said: “Power chairs are great if you have to travel any distance under your own steam but they can make you feel more paralysed and disabled. Plus they wreck the house, banging into things, and it’s much harder to get close to worktops, beds etc…”

It’s one thing if a powerchair ‘wrecks’ your own home but wrecking a home that doesn’t belong to you is something far more serious.

The other two points Reid mentions were also something I was seeing. The first, a powerchair makes you feel more disabled.

This is something I have found; I feel more disabled in such a chair as it makes me more dependent on others. I have also noticed a change in the reaction of others towards me when I have been in the powerchair.

Reid pointed out a powerchair makes it ‘harder’ to reach worktops. I already have difficulty in the kitchen due to my disabilities, but the powerchair does nothing to assist me, instead, it makes it more of a problem.

Where the powerchair does help is with my pain and this is significant.  As soon as I first sat in it, I noticed how much more support it gave my back and in time that resulted in a lot less pain, especially when it was tilted.  It also gives my shoulders a rest from ‘wheeling’ me around.

As I am meant to be transitioning to this powerchair, I still have my active chair.  The problems with the powerchair damaging walls and doors means I’m anxious using it. But if I don’t use it, I don’t get the practice using it and the substantial pain relief. I feel it’s an impossible situation to be in.

*Find out more about the memoir from Melanie Reid here: https://www.amazon.co.uk/World-I-Fell-Out/dp/0008291373

*Find out more about the Spinal Injuries Association here: https://www.spinal.co.uk