by Dee Montague-Coast (FTWW Engagement Officer)

Last week, I met with my (at the time of writing, only) work colleague in-person – something so normal to many, however it was the first time I’d seen her in person since November 2019 – over a year before I began working for FTWW.

Before last week, when we’d tell people we’d not seen each other in-person for 5 years, we would be met with shock, surprise, and disbelief. “But FTWW has achieved so much! HOW!?” exclaimed one.

The fact that these responses are the norm, and FTWW’s remote and flexible working practices seen as highly uncommon, show how far we have to go – and why barriers to work for chronically ill and disabled people continue to persist, despite many efforts to get more disabled people into work.

At FTWW, we are delighted that King’s College London is conducting research into how flexible job design might help people with fluctuating health issues and impairments who are seeking work. Catherine Hale is a member of the research team, and has developed the term ‘FlexPlus job roles’.

“Previous research by Astriid into the working arrangements of people with long-term health conditions shows that people with Energy Limiting Conditions typically need three dimensions of flexibility in combination:

• Worktime flexibility so that people can spread out their working hours across the week(s), in order to accommodate fluctuating symptoms and a variable capacity for work.
• Reduced hours to accommodate the needs of people with energy impairment, those who use pacing to manage their symptoms, and/or those following specific medical or treatment regimes.
• Working from home to remove the exertion of travel and being in over-stimulating work environments, giving people increased autonomy to manage their medical needs.

Therefore, FlexPlus jobs are roles that involve more than one dimension of flexibility and go further than common understandings of flexible working.”

These principles have been adopted by FTWW from the moment we could employ paid staff. We support and employ those with a diverse array of conditions which might not typically impact or be associated with energy depletion, and we know that many of these conditions and their symptoms have been historically misunderstood.

We have open dialogue with our members, volunteers, and staff; we listen and adapt to individuals’ needs as far as possible.  Without these principles and benefiting from FTWW centering my needs, I would simply be unable to work. Even with all of the adjustments in place that I need, I still occasionally have to alter my working days or take time off sick due to the fact I am living with multiple health issues that have no treatment options or cures. How many workplaces would understand that? Not many, in my experience – and that of countless other disabled and chronically ill people.

Earlier this month, we were pleased to respond on behalf of our members to the Senedd Equality and Human Rights Committee’s consultation on disability and employment. Our huge thanks to all of our survey respondents and focus group participants for sharing their expertise and thoughts, especially regarding the impact of long-term and fluctuating health conditions and how perceptions of these can act as a barrier to seeking support and reasonable adjustments in the workplace.

Although the UK Labour Government has said in its plan to Make Work Pay that it will make flexible working ‘the default except where it is not reasonably feasible’, across society, we’ve seen a huge shift in attitudes to remote working since so many people were ordered to work from home in March 2020 when the UK went into its first Covid-19 lockdown.

Many places of employment are very keen to ‘get back to normal’ following the pandemic, which although downgraded to epidemic status, is still very much part of our lives – especially those of us who are chronically ill and / or disabled, and at higher risk of long-term illness or death when it comes to Covid-19 and other viruses. Many workplaces are demanding staff return to site, removing remote working options, or implementing hybrid roles where staff must attend the office for a set number of days per week.  

You will have likely seen comments in the media and social media deriding people who work from home as ‘lazy’, and full of assumptions about how they spend their day. I recently saw someone slating “WFHers” as “just sitting around in their pyjamas all day and watching daytime TV”. I work from my bed; sitting in an upright position for long periods of time worsens my symptoms – which would then of course impact my ability to work. I am one of my disabled people who often works whilst wearing pyjamas, even when attending meetings online – even those with staff from Welsh Government. People rarely even notice, and if they do, they understand that sometimes I can work OR shower / get dressed / ‘look presentable’ – but I can’t always do both. The world will not cave in because I’m wearing different items of clothing.

The focus on appearance has been in the news again this month; ‘Sir Keir Starmer and his wife Victoria accepted donations of clothing so they could “look their best” to represent the UK, [Foreign Secretary] David Lammy has said.’ As long as we focus on prioritising appearance and equating it to professionalism, disabled people and other marginalised groups – especially those living in poverty – will continue to be at a disadvantage.

The ability to work from home has been a godsend to many, and something many of us had fought for the right to do long before lockdowns and public health measures – often without success. ‘Normal’ didn’t work for many pre-pandemic; not just disabled and chronically ill people, but also those with caring responsibilities, long commutes, limited transport options and so on.

There is no doubt that chronically ill and disabled people will be forced out of their roles or find them impossible to apply for if their needs are not met – and respected.

We must also ensure that governments, decision makers, employers, and wider society understand and respect that for many disabled people, work and volunteering are not and will never be options for them. Those who are unable to work are often missed out of the conversations, or find they are unfairly criticised when they are included.

For those who are not in work but could be, the burden cannot be placed entirely upon them to change their circumstances without the support they need; just one example is the Access to Work scheme, which provides grants to help pay for practical support in the workplace. As of June 2023, 23,289 disabled people were awaiting a decision on their Access to Work claim, with the longest waiting a staggering 354 working days. Waiting lists for assessment have continued to increase, often resulting in disabled people losing employment opportunities or not having the support they need to thrive. 

Improving opportunities for disabled people must also take an intersectional approach; tackling poverty, NHS waiting lists and improving access to appropriate healthcare, addressing housing problems, making public transport more available and accessible, tackling systemic racism, ableism, and prejudice against LGBTQIA+ people, addressing the climate crisis et cetera will improve things for everyone, not least disabled people.

We are too often seen as a problem to be fixed rather than have our needs met to ensure we thrive. Last week, campaigners criticised ‘the Labour government’s “hugely disappointing” and “exclusionary” decision to set up a board of experts to examine “economic inactivity” without appointing a single representative of a disabled people’s organisation.’ The fact that disabled people continue to be seen as ‘economically inactive’ whether in employment or not is hugely troubling – not least because we must still buy food, pay bills and so on just like everyone else – in other words, being economically active! Disabled people who aren’t in work also often volunteer or are themselves carers – which saves governments and health services money, as well as making valuable contributions to communities.

Negative attitudes around disability persist across society. Those of us who rely on disability benefits continue to be demonised, with a regular focus on the deserving vs the undeserving, and critics ignoring the fact that the ‘Disability Price Tag’ – an average of an additional £1,010 per month (Scope) – means that we need that additional help. So, even if disabled people are in work, they will still often need disability benefits to ensure their standard of living is equal to that of non-disabled people.

We also continue to be seen as a tiny minority, despite the fact that 26% of the population in Wales is disabled. Ultimately, ensuring that disabled people have their needs met and that decisions are made with us as equal partners (nothing about us without us!) means more of us can access employment and volunteering opportunities, and that we need fewer interactions with health and social care. Everyone, regardless of their health status, deserves equitable opportunities – not just to survive, but to thrive.