Returning to work in an ableist society

Getting a job is a challenge for anyone, for disabled people it can become a herculean task. I am 33 years old and have accepted that if we don’t change the way society views and treats disability, I may never be able to hold down a full-time job. I have multiple disabilities that mean I have complex health needs in particular brain fog, dislocations, pain and fatigue. The degree to which they affect me day to day can vary but they are always present. For many years I felt the constant pressure to have a steady job that led to a career to ‘make something’ of myself, this pressure exacerbated my health problems enormously. When I decided to let the pressure go and start resisting the societal assumption that your worth is dependent on your ability to make money, it was freeing in a way I could never have predicted. 

Every disabled person I know has had traumatic experiences with work, trying to get a job and trying to maintain it. The fear of assumptions, stereotypes and discrimination has prevented me having the confidence to get into work, and contributed to me feeling exhausted by the idea of it before I’d even tried. I instead decided to go down the volunteering route and gain some expertise and experience without the added pressure of having to meet targets and the expectations that come with paid work. My first volunteering role, in my late teens, started really well. I was treated as a valued member of the team and my hours were always flexible to accommodate my health needs. Unfortunately, a new manager arrived who lacked compassion and was frustrated by the unpredictable nature of my disability. This culminated with me being given an ultimatum to commit to more hours and rigid time slots. I decided the best thing to do for my health was leave, but I felt I needed to challenge the discrimination I was experiencing in the hopes it would prevent it happening again to someone else. I requested a meeting with the managers in which I pointed out their lack of reasonable adjustments and the impact it was having on my physical and mental health. They apologised and acknowledged they had learnt from my experience so I was able to leave on better terms. 

Leaving a volunteering role I loved wasn’t easy, I was left with a crushing feeling of failure and my health in a much worse state than when I started, and the thought of getting into work felt not only unattainable but incredibly traumatic. Experiencing discrimination will always increase stress levels which is well known to have a negative impact on the mind and body, sometimes severe. Increased stress can be hugely detrimental to an able-bodied person’s health. For someone with long term mental and/or physical health problems it can be disastrous. 

Having been disabled from childhood, I had already felt the wounds of discrimination from an early age. All through school, starting from around the age of five I was subject to constant ableist micro-aggressions from teachers, office administrators and fellow pupils. I often couldn’t attend due to poor health, at one point my attendance was around 20 per cent. I was very rarely shown empathy, I was treated akin to a slacker, as someone who just couldn’t be bothered to come into school. Teachers and peers alike would either openly question the validity of my health problems or do so by rolling their eyes when I would describe symptoms which left me feeling ‘othered’. I have become used to not being believed and having my experiences minimised. As an adult, entering the world of work and having your abilities questioned and facing cynicism and disbelief all over again is extremely triggering and retraumatising. 

Many people with disabilities are in poverty and reliant on welfare benefits. They worry they will be worse off financially in work and if they lose their job will face significant delays when reapplying for benefits resulting in further poverty or debt and a deterioration in their health. However, disabled people can feel more confident to rejoin the workforce with the right support such as health interventions. Getting people into work also depends on the willingness of employers to take people on. It is of course fair that employers need employees they can rely on, however it means that if your health is not stable you can’t ever guarantee how reliable you will be. There are plenty of jobs in which people with unstable conditions could thrive. For several years I was employed part-time by a relative doing accounts admin and that worked well because the relative was patient and understanding, but not all employers have the will or the ability to be as flexible. 

Systemic ableism runs deep and affects everyone in society, disability is the only protected characteristic that anyone could acquire at some point in their lives. We all need to get a handle on how to properly cater to people with differing needs. In the workplace reasonable adjustments are often not made, in reality I have been made to feel a burden or a ‘diva’ for asking for too much, even if all I needed was a more supportive and comfortable chair. If your health is stable then it’s easier for employers to judge what adjustments you need and make them but people can still be cruel in practice, resent you and talk negatively about you. I have often experienced these painful triggering moments, an eye roll here, a tut of exasperation there, it all serves to make you feel a nuisance just for existing. 

Making work places more welcoming and flexible for disabled people could mean more disabled people feeling confident to try out the world of work without risking their health. When the Covid pandemic happened it became the norm to work from home, which is something disabled friends of mine would have benefitted from a long time ago. Before the pandemic asking to work from home was seen as an unreasonable demand for many job roles. Employers need to suspend their assumptions, stereotypes and prejudices and think more creatively to enable disabled people to be accommodated. There is a wealth of disabled talent that goes untapped and unnurtured. I believe once we change the narrative and realise it is not only the disability that disables but also society that disables a person, we can see how a world of opportunities could open up for people. 

We should go one step further and challenge the preconception that people’s worth should only be measured by their economic productivity. Paid work is valued more than other roles in society such as child rearing, caring responsibilities and other (traditionally female) vocations. We can enrich humanity in so many more ways than by simply making money, our worth is so much more than that. By valuing all the ways people can contribute to society disabled people could be uplifted and feel both recognised and appreciated.