To Exist as I am by Grace Spence Green: Don't ignore me - and don't pity me, either

On October 17, 2018 Grace Spence Green, 22, a fourth-year medical student, was walking through the atrium of Westfield Shopping Centre in east London towards the tube station when a stranger jumped head first from the top-floor balcony and landed on her neck.

The fact that she happened to be walking past at that moment meant Grace broke the man’s fall and thus saved his life. But his fall broke her spinal cord. She was paralysed for life, from the chest down.

The two would never exchange words. She doesn’t even mention the man’s name in this powerful and excoriating memoir.

On the night of the accident, he happened to be in the bay beside hers in A&E, just for one night. Much later, she discovered he was a migrant who’d been high on weed. He was sentenced to four years in jail for grievous bodily harm, released after serving two, and then deported.

She doesn’t feel bitterness towards ‘The Man’, as she calls him, or even any emotional connection. All of her anger, and there’s a great deal of it, is directed towards us, the general public, for getting things so wrong in what we say to disabled people, and how we treat them.

Prepare to be severely chastened – and re-educated.

Grace says she doesn’t desire our insatiable curiosity, or our pity, yet she invokes both, strongly, in her visceral account of the aftermath of that fateful day.

The week in a high-dependency unit ‘in a warm, fuzzy, opioid dream’; the 26 metal staples put down the middle of her back by the surgeon Dr Bull; the eeriness of the ‘bloodless injury’, which nonetheless wrecked her body; the ominous words spoken by the doctors three months later, at the official prognosis and diagnosis meeting: ‘It would be good to see things changing over the next few weeks.’

But things did not change. Sensation did not come back to her legs or toes. Up to then, part of her still believed that the operation would ‘fix’ her, and make everything go back to how it was before. Now, ‘my seemingly impenetrable bubble of denial had burst’.

It would take eight months for the fact that the injury was permanent, and that she would never walk again, to sink fully into her brain.

At the Royal National Orthopaedic Rehabilitation Centre in Stanmore, north-west London, Grace was relieved as well as shocked to meet other young people in a similar plight. There was competitiveness among some of the patients. ‘Are you walking yet?’ she was asked. ‘Not yet,’ she’d reply.

She recalls the bleakness of returning to the Centre after a few days at home over Christmas with her loving family and her steadfast boyfriend Nathan, to whom she would later become engaged.

She thought back to the weekend before the accident: she and her friends had sat up all night round a bonfire in a Kentish field, chatting and laughing. ‘Now I find I have lost control of every bodily function, in a place I cannot leave.’

She was told she’d need to insert a single-use catheter into herself every four hours for the rest of her life. She felt ‘waves of hatred’ towards the wheelchair at first – until she learned to appreciate it as a tool, just as spectacles are a tool. She now can’t stand the expression ‘wheelchair-bound’.

She bristles when people use the word ‘inspirational’ to describe her progress – she calls it ‘inspiration porn’, as if people get some kick from her ‘tragic’ story. ‘I’ve heard the word so many times that it’s lost all meaning.’

But it’s hard not to see her as an inspiration. She completed her medical studies, became a junior doctor in 2021 and now makes it her business to protect the dignity and autonomy of her patients, in a way that sometimes did not happen to her.

She notices that as soon as she takes off her lanyard and stethoscope at the end of the working day, she becomes ‘hyper-visible and utterly ignored’.

That’s the daily status of too many disabled people. She does not like her wheelchair to be pushed or pulled ‘in the name of helping’. It undermines her autonomy. She also hates it when people hold the door open for her: ‘It can be much easier for me to do it myself, rather than having to duck under an outstretched arm.’

We should say to a disabled person, ‘You let me know if you need help.’

Questions and remarks that annoyed her while she was in hospital were: ‘Is there anything that can be done?’; ‘Are you getting better?’; and ‘It’s not permanent, I hope?’

So, don’t say those.

But also, whatever you do, don’t say to a disabled person that you don’t see them as disabled. ‘ “You’re not looking at me properly,” I want to say. “You are missing a huge part of me by trying to ignore this." '

And on no account must you say you pity her. ‘When people do that, it feels as if they have forced their way into my world and spat on it.’

Nor must you single a disabled person out for notice, even out of kindness. Once, back at medical school, an instructor was on the phone cross that a lesson was starting late. ‘And we have a lady in a WHEELCHAIR waiting in the corridor, so it’s just unacceptable.’

Grace felt ‘shaken, to be singled out in a crowd of peers.’

Later, the instructor said, ‘Sorry – I’m really sorry, I didn’t mean to be offensive, I’m sorry, it was just a stressful situation.’

Grace didn’t ‘interrupt her ramble’. She just looked directly into her eye and said, ‘OK’.

‘Micro-aggression upon microaggression, piling up,’ Grace calls all this. For her, it’s an uphill battle to defend her happiness, when the assumption is that she’s the ‘poor brave tragic girl’, whose boyfriend was ‘a hero’ not to desert her.

Every October 17, she celebrates her ‘alive day’. The fact that her wheelchair is full of scratches and dents is a sign of a life lived to the full. ‘I am going to enjoy a life that society has told me is not worthy. That is activism.’