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For those of working age, with medical vulnerabilities, the Covid-19 pandemic has brought to the surface the stark reality of injustices within some organisations.

This is especially true for those of working age with hidden disabilities and long-term conditions: ‘invisible’ conditions tend to illicit unreal expectations from managers regarding their performance, which creates employees who must ‘work through fear’, making conversations around accommodating these disabilities/ long term conditions in a more flexible manner extremely difficult. Individuals have been forced to return to unsafe working environments and many have lost their jobs.

Looking at the anecdotal and research evidence- shown in the discussion below we look at

  • Long term conditions
  • An economic issue
  • The future

What becomes clear from this is that businesses need to change the ‘ways we do things around here’, radically and soon, if they are to become truly inclusive.

Long Term Conditions

 

An estimated 15 million people in the UK have long term conditions or chronic diseases “[…] for which there is currently no cure, and which are managed with drugs and other treatment, for example: diabetes, chronic obstructive pulmonary disease, arthritis and hypertension.”(i)

I would like to share a little of my experience:

I was born with several hidden and visible long-term conditions. Like all those with chronic conditions, I have had periods in my life where any of these have been acutely exacerbated (leading to intense treatment and sometimes hospital care). Currently, with my visible conditions ‘dormant’, anyone who meets me would not be able to immediately identify my ‘differences’.

To be able to manage these conditions takes a LOT of self-care, and sometimes, no matter what I do to help myself, I will get ill… I will ‘naturally’ pick up any virus going around the workplace- especially in the winter months- if I am too close to anyone in my work environment when I am physically low (I was practicing the 2-meter rule many years before most of the rest of the UK population were advised to, and the psychological consequences of keeping your distance are an entirely separate issue which I won’t be addressing here, but suffice to say it very often did me no career favours!). To give you some idea of just how precarious my conditions can be sometimes-what I mean when I say will catch diseases when I get ‘physically low’, for me, is sometimes just a consequence of the weather changing, or half an hour less sleep, or a glass of wine the previous night, or even an argument with someone the previous day… the slightest element can sometimes upset the delicate balance of my ‘rebel’ immune system…

A few years ago, I gave up trying to hide my conditions from employers -even prospective employers. I had reached a crisis point with my health and was looking at the possibility of the end of another very-promising-at-first role and I was just too exhausted to go through the same ‘routine’ again (I am wondering how many others with hidden disabilities/ conditions have undergone the same cycle as this, and for how many times?):

  1. Secure a job, not disclosing your conditions
  2. Work in role successfully for ‘X’ days/ months/ years
  3. Reach crisis and become ill
  4. Return to workplace too soon (as still feel cannot disclose)

OR

Disclose to employer because you physically cannot return to the workplace yet

  1. On return, regardless of which choice at 4 above, experience PUSH out of the business from management (being excluded; no longer being valued for your input etc.)
  2. Leave the business because the whole experience is making you more ill.

The irony always was, in these circumstances, that all I ever needed from my managers once I disclosed my conditions, was compassion: empathy for what I was going through and some support to have the time to be able to bounce back to my ‘best self’… in my long and varied career I have never received this… and I doubt I am the only one to experience this either.

An Economic Issue

 

“Most individual long-term conditions are more common in people from lower socio-economic groups” (i).

There are two reasons -for me- why I went through the cycle I describe above and didn’t tell prospective employers about any of my conditions for a very long time: One was that I had started my career telling everyone (I was very honest and extremely principled when I was younger!) but after repeated ‘difficult conversations’ over ‘accommodations’ at interview stages, I would be turned down for the role anyway (but even those conversations were better than the interviewers who just said “Oh no, that’s no good, we can’t deal with that” and showed me the door during the interviews!) The second reason was that- after a short while my emerging wake-up call was that my principles couldn’t keep me from being hungry or keep the roof over my head… I realise-somewhat disappointingly- that my decision to ‘out’ my conditions to employers a few years ago was not only because I was mentally exhausted from not doing so, but also because I had reached a stage in my life where I could afford to take the risk…

The latest available NHS data (published Aug, 2021) which looks at the employment rate differences for people with long term conditions compared to the general population rate estimated an 11.7 million of those with long term conditions made up the working age population and, out of those, only 64.5% were in employment. The comparison to the general working population was 75% (ii)

That 10.5 indicator value difference is from the first quarter of this year, and it represents 4.2million people of working age with no employment. 4.2 million people: nearly the entire population of the West Midlands (iv). Are we to presume that ALL those 4 million are too sick to work at all? Is it not feasible that a proportion of them, however small that proportion might be, are not in work due to the same issues I have faced throughout my working life? It’s worth noting again here that those figures are from the first part of the year, when lockdown was still in force. What could the figures be like now for those with long term conditions? What skills and abilities are businesses missing out on by not employing any of those 4.2 – or more-million? It hurts me to consider these questions when the UK is considered to be an ‘enlightened’ society in terms of Diversity and Inclusion in the workplace…

The Future?

 

“[…] analysis of individual conditions suggests that the numbers are growing, and the number of people with multiple long-term conditions appears to be rising (i).

This King’s Fund identify that- due to the increasing age of the population- Workplaces comprise of an increasing percentage of people with long term conditions and will continue to do so. Isn’t it about time then that all working-age people with any vulnerabilities were able to talk openly about them and have flexible working patterns/ approaches to accommodate them without the fear of- and real chance of- being penalized for disclosure?

In November 2020, the CIPD looked at the potential trends for the diversity of employment relationships for their Hackathon 2030. The results of this collective research led them to advocate the need for ‘co-designed’, ‘employee-led change’,’ from a point of mutual understanding’ and ‘adaptive mindsets. A utopian ideal indeed. Their Diversity illustration shows that relationships need to change for current attitudes to do the same (iv). But a circular argument exists here: we know that the outcome needed is a positive one (i.e. Inclusivity); and, further, we also know that outcome is evidenced by individual actors gaining a sense of ‘belonging’ (v), but all this has been shown to only be possible via the opposite; i.e. by changing attitudes, to being more authentic, open, and flexible, by managers and business owners striving to embed trust (vi) and encourage psychological safety (vii) before any relationships can change for the better. What to do then to improve the situation for all workers involved?

Conclusions

 

Unfortunately, the economic driver in business continues to reign supreme (as an accountant, I can attest to this), and, while businesses cannot survive without finance, the constant ‘old/ rationalistic’ way of prioritizing of this driver is a detriment to the people in those businesses. How can we expect to see any positive change if individuals with hidden conditions and disabilities are too scared- for genuine economic and health reasons- to disclose, and employers are too entrenched in what and how business ‘should be’ to embrace any new ways of working?

The following three suggestions may go some way to improving working lives going forward:

  1. Businesses need to create a new culture of openness about hidden conditions and disabilities

Culture creation here starts from the top down- Business Leaders need to be better at listening to the individuals that make up their business/ teams and affording them the flexibility to work to their best outputs on a day-to-day basis. The economics of any business suffer more from leaders not fostering employee collective engagement than from poor individual performance (viii).

  1. A truly inclusive workplace reflects individual differences through its flexible business practices

If the pandemic has taught businesses anything, it is that flexible working practices/ humanistic based approaches can be effective and – in certain cases- more productive- than ‘old/ rational’ ways of working.

  1. Individual voices need to be encouraged to become collective for real change to occur

Alone, individuals with hidden disabilities can become demotivated and battle hardened. If those of us who hide step forward together, we can affect change. As Ghandi said “Let us work together for unity and love”.

PurpleSpace https://www.purplespace.org  The 3rd of December is International Day of Persons with Disabilities…Purplespace have their global #purplelightup event, where they encourage all businesses to celebrate the economic contribution of disabled employees by lighting up everything purple/ wearing purple/ having purple theme days! 

The following content references this topic:

  1. https://www.kingsfund.org.uk/projects/time-think-differently/trends-disease-and-disability-long-term-conditions-multi-morbidity
  2. https://digital.nhs.uk/data-and-information/publications/statistical/nhs-outcomes-framework/august-2021/domain-2—enhancing-quality-of-life-for-people-with-long-term-conditions-nof/2.2-employment-of-people-with-long-term-conditions
  3. The Geographist website, 2021, populations in towns and cities of the UK
  4. https://www.cipd.co.uk/knowledge/strategy/hr/people-profession-2030-future-trends#_ga=2.263144847.2082419456.1637318888-1767710033.1637318888).
  5. Baumeister, R & MR Leary; 1995; The need to belong; desire for interpersonal attachments as a fundamental human motivation
  6. Frances Frei, 2018; Ted talk on trust triangle; https://www.ted.com/talks/frances_frei_how_to_build_and_rebuild_trust/transcript?language=en
  7. Edmondson, A; 1999; Psychological Safety and Learning Behavior in Work Teams
  8. Bellet et al, 2019, Does Employee Happiness have an impact on productivity? Said Business School, WP 2019-13 https://www.gallup.com/workplace/285674/improve-employee-engagement-workplace.aspx
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