The disability employment gap: ‘I was told to live on benefits because that’s what people like me did’

When an employer began stripping away duties and relegated her to a tiny desk in the kitchen unit of the office, Barbara Stensland knew her recent multiple sclerosis diagnosis was behind it. 

This was an attempt to push her out of the workplace. 

Eventually, after repeated requests for accommodations went unmet – with the exception of some limited flexible working – Barbara was let go from her role as a community outreach worker, a job she loved. 

So, she took her employers to a tribunal for unfair dismissal – and won a financial settlement.

‘It was incredibly isolating because I was very vulnerable, going through a terribly difficult situation,’ explains Barbara, 47, who is now a construction worker and a PhD student. ‘I felt under attack, and not just from MS.

‘They told me they were sacking me for my own good and that I should go live on benefits because that’s what people like me did. They said I was a liability in the office.’

Across the UK, disabled people continually encounter barriers to securing, retaining and progressing in employment – something illustrated in a recent Government briefing paper, which found an employment gap of 28.8% between those living with disabilities and those without.

Put simply, from October to December 2020, the employment rate for disabled people aged 16-64 was 52.3% compared to 81.1% for those without disability. It’s a gap that has remained steady at around 30% for over a decade.

However, what makes it more concerning is that although the Conservative party made a pledge in 2017 to get one million more disabled people into work by 2027, we’re four years in and the figures have only dropped by 3%. Disabled people across the UK are still facing massive barriers to employment. 

After Barbara won her tribunal, she attended several job interviews before making the decision never to return to a traditional work environment. 

‘I realised I’d better not get a ‘proper job’ because the hours would be too strict for me and there wouldn’t be that level of flexibility,’ she remembers. ‘I now know I won’t ever work for a structured company again and I’ve made peace with that.

‘It was like a form of grieving. I was 37 when the MS started and it felt like a lot to come to terms with, especially with the realisation that I would never have a normal job again unless I created work for myself.’

Now Barbara works part-time as a construction worker with one of her best friends, who prioritises her access and flexible working. Finally able to focus on her health at work, she is thankful for the freedom of an understanding employer, but giving up on ‘normal work’ is not something she should ever have had to sacrifice. 

‘I was waving goodbye to an old life,’ she says. ‘Initially that was really hard because I was in the middle of finishing a second degree to then do a Master’s in social work, and I had to give that up as well. 

‘So there were a lot of endings with MS and life changed overnight.’

Roxy Chanel also lives with MS, as well as having benign intracranial hypertension and antiphospholipid syndrome, which affect her mobility on a daily basis due to fatigue, body weakness and intense headaches. Her conditions also impact her cognitive function, meaning her focus and memory are impaired by symptoms. 

Currently unemployed, she had to give up her dream of pursuing a career as a freelance fashion stylist due to inaccessible work situations, which Roxy says left her fighting feelings of worthlessness.

‘It was a hectic work environment where I was required to be on my feet all day, which I couldn’t do because my MS causes weakness and pain,’ she explains. ‘I also worked in retail and at that point, chairs at the till were not an option, as in most service jobs it was a stand up and serve position. I wasn’t offered any sort of alternative.

‘Some colleagues became friends and were concerned, while others, because they couldn’t always see my struggles visually, found me annoying and felt I was getting special treatment.

‘No one said anything directly but it was the general treatment and social dismissal. Silence can be as loud as words.

According to the 33-year-old podcaster and disability rights campaigner there is not enough understanding or training, while ’employment adaptations are lacking.’

Roxy adds: ‘It’s sad because companies adapted so quickly for able-bodied people during the pandemic – it shows it’s possible if they want to do it.  

‘I feel like they don’t see disabled people as worthy or worth adapting for. They don’t see us as an asset to the workforce.’

In fact, despite a meteoric rise in remote working over lockdown, research by flexible working consultancy Timewise showed that four out five of the 6million jobs analysed did not advertise flexible work options – a crucial factor in encouraging disabled people to apply. 

Meanwhile, a survey by The Leonard Cheshire Charity showed that two in five hiring managers considered being unable to support disabled people during the pandemic a barrier to hiring them, while 20% admitted they would be less likely to employ a disabled person. 

Despite the government’s aim to reduce the disability employment gap, the coronavirus crisis saw it increase by 0.7% during October and December last year, with a quarter of disabled people surveyed by Scope believing that their employer can make the workplace safe enough for their return to work. 

A higher proportion of disabled employees have also been made redundant than non-disabled workers during the pandemic, according to ONS. Between July and November 2020, 21.1 per thousand disabled employees were made redundant compared to 13 per thousand non-disabled people. 

However, as much as the pandemic has impacted how disabled people work, it certainly isn’t solely to blame for the endurance of the employment gap.

Lack of awareness around rights is also said to be a significant contributor. Many disabled people are missing out on implemented initiatives, such as the Access to Work scheme, which provides grants of up to £62,900 per year to keep a job accessible, because they are either unaware of their existence or do not realise they are eligible. 

‘Access to Work is sometimes described as the best-kept secret in government because there are so many employers that don’t know about it,’ says head of policy and campaigns at Scope UK, Louise Rubin. 

‘It’s not particularly visible and often the onus falls on the disabled person themselves to explain it, go through those first steps and let employers know that it’s there.’

Neurodiversity consultant Rachel Morgan-Trimmer lives with ADHD and autism and has struggled with identifying as disabled.

Still waiting for an official diagnosis after her autism was identified by her therapist, Rachel does not always associate it with the word disabled because, as a self-employed person, she meets her own access needs.

‘I don’t always identify as being disabled,’ she explains. ‘I know that some people do with the exact same conditions and support needs that I have, but most of the time I don’t, unless it’s convenient for me to do so.

‘I work from home and I’m self-employed, so any impact that my neurodiversity would have in a normal job doesn’t really happen because I’ve got my environment set up the way I need it. 

‘That’s quite privileged,’ Rachel adds. ‘A lot of people in my position don’t have that, so they might feel their disability much more strongly when their needs are not met or supported.’

However, her ability to work in a traditional nine-to-five role is impacted by difficulties understanding unspoken social rules and cues, therefore making communicating in an overstimulating and hectic office difficult and stressful.

‘I do play disabled top trumps and I always considered someone else’s first,’ admits Rachel.  

‘If I perceived their disability to be more challenging than mine, I would always put that person’s needs ahead of my own.’

Following years of struggling to function in the average work environment, particularly due to the stress of not understanding unspoken social rules and cues, Rachel was inspired to use the lessons she had learned about her needs to help others. 

‘I developed a huge raft of tools and techniques to help me be successful, and I just couldn’t bear the thought that there were people like me out there who could use this stuff and didn’t have access to it,’ she explains.

After wrestling with a lack of control over her work environment and the effects on her mental health, Rachel, now 46, switched career paths and became a neurodiversity consultant to improve disabled access in the workplace. 

‘I sometimes see that the underlying narrative is, “we have to hire the disabled to be nice”. But it’s not about being nice, it’s about an economic benefit,’ she says.

According to a government white paper, finding work for an additional 1% of eligible Employment and Support Allowance claimants in 2018/19 would save the Exchequer £240million and boost the economy by £260million – a figure that would add further to the £274billion annual spending power of disabled people and their households.

So, why are they still being blocked from employment when there’s such potential economic benefits?

‘When it comes to employers, there’s still this negative, incorrect assumption that it’s going to be far more difficult to hire a disabled person,’ explains Scope UK’s Louise Rubin. ‘We hear from [disabled] people that have had hundreds of interviews, and not one of them has landed in fixed-term employment because employers cannot see past the disability and they worry about what’s going to be involved in supporting someone.’

Equity and inclusion leader Dr Joanna Abeyie MBE is combating these preconceived judgements with her consultancy firm Blue Moon, which supports businesses to create inclusive cultures with inclusion audits and by sourcing diverse talent. 

‘Unconscious bias remains a hard challenge,’ she says. ‘Even with disability training, we are still seeing biases. Having a “Disability Confident” tick [there are three levels to the scheme, each of which gives a certificate to the employer to “recognise their achievement”] means nothing if your processes are riddled with prejudice. 

‘If you don’t actively engage with all talent, including those with visible and invisible impairments, and you have not taken the time to educate yourself on the varying kinds of barriers that disabled people experience, you have a problem.

‘It’s the employer’s responsibility to change the workplaces, not the disabled person’s responsibility to change your mind,’ Joanna adds.

The Disability Confident scheme was set up by the government to counteract employment prejudice against disabled people. It champions inclusive recruitment practices and the latest figures show that over 20,000 employers have signed up.

Meanwhile, JPMorgan Chase have introduced an initiative called ‘Autism at Work’, which, since 2015, has focused on hiring neurodivergent people while ensuring their needs are accommodated. Six months into the pilot programme, they discovered that employees were 48% faster and as much as 92% more productive when compared to their peers. 

With Scope’s analysis of a Labour Force Survey dataset from 2013 to 2020, it was revealed that for every 100 disabled people who find a job, 117 fall out of the workplace. 

To combat this, disabled workers often elect to go freelance to protect their health and their finances.

Currently, 14% of all disabled people in work are self-employed – something that has increased by 30% in the last five years. Rachel Charlton-Dailey is one of them. 

Before becoming a freelance writer, she would push her body to the point of collapse just to remain at work. 

Working in childcare and wrestling with a complex combination of conditions including lupus, endometriosis, dyspraxia and osteoporosis, accommodations that would have helped Rachel, 32, stay in work were never applied. Instead, colleagues treated her as if she was faking it or being lazy. 

‘I was often made fun of by colleagues both behind my back and to my face,’ explains Rachel. ‘It made me want to prove I could do the job and force myself to work when I was exhausted.

‘But I ended up collapsing at work. Then I was treated like I was unsafe to be around children by myself, without any acknowledgement of how I’d gotten into that situation.’

Since then Rachel has forged a career as a freelance writer and founded a publication written by and for disabled people called The Unwritten. 

‘Because I often get tired and have a lot of pain in my pelvis and legs, I need to be working lying down in bed,’ she explains.

‘I don’t work on a typical schedule anymore, more when I’m feeling up to it. But the truth is disabled people often give up [on employment at conventional work environments] because we’re exhausted and worn down by all the ableism we’ve received.’ 

Despite all the barriers people with disabilities face when it comes to employment, organisations like The Ability People are working hard to recruit more disabled people into employment. 

Former Paralympian and managing director and co-founder Liz Johnson started the project after discovering the disability employment gap. 

‘Nobody would question if a person with a disability didn’t have a job,’ explains Liz. ‘But the infuriating thing is, they don’t question it because it’s wrong – it’s because they immediately think that a person with a disability isn’t capable of doing it. 

‘If people, employers and organisations strip it back and see the skill set that a person with a disability has on offer then you’d end up with a more productive workforce.’

Minister for Disabled People Justin Tomlinson says that the government is still very much invested in closing the disability employment gap by aiming to have an additional 315 disability employment adviser roles being placed in jobcentres across the UK by May 2021, bringing the total number to 1,115.  

‘This Government is taking unprecedented steps to protect, support and create employment for all,’ he explains. ‘Through our inclusive multi-billion pound Plan for Jobs we are supporting disabled job seekers to find and retain fulfilling careers.

‘Disability employment was at a record high before the pandemic. We’re taking action to recover that record and then surpass it, by supporting one million more disabled people into work by 2027.’

However, despite the significant actions being taken by charitable organisations, individuals and the government to close the disability employment gap, many holes still need to be patched before it’s closed completely.

‘If you speak to any person with a disability that genuinely wants to work, they don’t want an easier option, they just want a fair one and a fair environment,’ says Liz Johnson. 

‘It’s about explaining what equity looks like and how to recognise your biases – because we’ve all got them.

‘If you don’t give me everything I need to be successful then it’s not an opportunity. It’s just a token gesture.’

Do you have a story for In Focus? Get in touch by emailing claie.wilson@metro.co.uk

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