Ruth Hunt, a journalist and columnist who lives with spinal cord injury, talks about stigma from within the disabled community, and discusses Melanie Reid’s memoir The World I Fell Out Of on the “complicated politics of incomplete injuries”.
When I first sustained spinal cord injuries in 1989, I was aware there was stigma around disability issues, but at that time I didn’t know that some of it would come from within the disabled community.
I was treated at the first hospital closest to the incident, and I was lucky to have a spinal surgeon who had a particular interest in my sort of (burst) spinal cord injury (SCI). As I had a SCI, I became a patient at the regional spinal cord unit as soon as I was discharged from that first hospital.
When I got my appointment for the spinal unit, (something that became a yearly event) I remember being in the busy outpatient’s area. Patients were talking to each other. At one point I was admiring the wheelchair of the man who was sitting next to me. When I asked him whether the chair gave good support and was comfortable, he replied by asking a question: “Are you complete or incomplete?”
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I hadn’t heard my diagnosis reduced to one word before, but this became my introduction into the toxic politics within the SCI community. That’s because the terminology and the subsequent care would leave me feeling ‘less than’ or ‘not disabled enough.’
I asked Dr Jane Duff, Consultant Clinical Psychologist/ Head of NSIC Psychology Team at Stoke Mandeville Hospital about this stigma towards those with incomplete injuries.
Dr Duff said: “Research with people with incomplete injuries such as cauda equina who may partially use a wheelchair, has found they can feel they are not disabled enough compared to full time wheelchair users and that the invisible aspects of injury such as bladder, bowel and sexual function are often underappreciated for the substantial disabilities they can bring with consequent negative impact on someone’s identity and quality of life.”
This negative impact was something award winning journalist, Melanie Reid, picked-up, calling it the “complicated politics of incomplete injuries” in her superb memoir The World I Fell Out Of.
Initially her injuries, sustained in 2010, were described as complete but later changed to incomplete.
She recalls a time when mentors were brought onto the ward. Noticeably, only one man had incomplete injuries, using sticks to walk, but all the other mentors, at the time, had complete injuries.
Those with complete injuries were called completes, and Melanie said that with a “certain edge” the other patients with incomplete injuries, (who might be unable to walk) were described as walkers.
In terms of care on the wards, Melanie described it as understandably directed towards those with complete injuries. But in the gym, though, her physiotherapist made huge efforts to help her develop function.
With spinal cord injuries being on a spectrum, and unique to that person, this broad-brush approach of dividing patients up into two groups using the terminology of ‘complete’ and ‘Incomplete’ can be fraught with danger.
Nobody is saying those with complete injuries don’t need additional care and treatment.
Instead, the argument is therapy should fit each patient. But this isn’t always happening.
For example, when Adam sustained his SCI last year and received his initial diagnosis, there was a plan: “But when my diagnosis altered from complete to incomplete, the plan didn’t change.”
With the change to ‘incomplete’, Adam was keen to get the therapy needed so that he might be able to get more movement back, but all the therapy he and others on the ward received was for those with complete injuries such as using a wheelchair and wheelchair skills.
Adam said: “This meant I had to privately fund the rehab I should’ve received while I was in the unit. It’s very frustrating.”
Charlie experienced very similar treatment when he sustained incomplete spinal cord injuries in 2003.
He noticed the physical therapy was directed towards those with complete injuries
Charlie said: “The complete patients got more assistance from the nurses (understandably so) but also more support from all the other teams like psychology where time for those with incomplete injuries was rationed.”
He also got the impression from how the staff and patients that complete injuries were the ‘true’ spinal cord injuries. Charlie said: “Complete injuries were whole or full – the right way to be but incomplete injuries appeared to be lacking and somehow missing the wholeness of a complete injury.”
When Charlie left hospital, he hoped this stigma between complete and incomplete injuries would subside. Instead, he found multiple people online saying his L1 spinal cord injury wasn’t ‘really’ a spinal cord injury. Being around such messaging, Charlie said: “I felt my injury was less significant/worthy/valued than others.”
David had a much better time in hospital that Charlie: “Some people had complete injuries and others had incomplete injuries but the fact we were all in the same situation meant we were able to talk to each other.”
But that level of support he got while in hospital vanished when he was discharged – leaving him to have to search the internet for help when he needs it.
He has also found talking to people outside, who don’t have that level of understanding about complete and incomplete injuries, can be quite isolating.
David said: “The usual things people take for granted, can be a major challenge, but they don’t see this. Also, they don’t see the hyper-sensitivity, the good or bad days, spasms, toilet function and all the other things bits that go into having such an injury.”
He misses the camaraderie he had on the ward. “Just being able to have a coffee and a general chat with people with similar experiences.”
Charlie on the other hand felt he wouldn’t access support groups, even if he could go to one.
He said: “If I’m completely honest, there is a fear of being judged, due to not being as seriously injured, like it was on the ward.”
That weird feeling of being in a world where you can be ‘significantly injured’ but be judged as ‘not quite as injured’, was something Melanie Reid described in her book.
Reid realised many people who had what doctors described as ‘incomplete’ injuries, didn’t fit into either group, instead they “existed in a non-functional torturous limbo in-between. Our bodies are irrevocably damaged, but a lot less than some.”
Those with incomplete injuries do know they are more fortunate than those with complete injuries, and this is not a criticism of them. Incomplete injuries come with challenges, but these often haven’t been given the attention and care they deserve, first in hospital and then in the wider world.
R.F. Hunt, freelance journalist and author.
The World I fell Out Of by Melanie Reid is available here, as well as any other bookshops https://www.amazon.co.uk/World-I-Fell-Out/dp/0008291373
