Does Remote Work?

How hybrid models are limiting accessibility.

As I am writing this, I am in bed, propped up by five pillows and barely able to keep my eyes open. 

The fatigue is hitting me hard.

What you are reading is a heavily edited version that I have revisited when I can stay awake for more than five minutes.

Fortunately, I am on annual leave today so I don’t have to worry about work. But I’m already worried about being well enough to go into the office on Wednesday (it’s currently Monday).

The shift to remote working has given me access to the workplace in a way that wouldn’t have been possible before. Unless I dedicated my entire life to making sure I can go into work five days a week. And who wants that?

I am incredibly grateful that remote working has become the norm, however as everyone shifts back to the pre-pandemic way of life, hybrid working is taking over.

Naturally, most people see this as an ideal middle ground between working from home and being in the office. Avoid the daily commute but still get to see your co-workers a few times a week; it’s the best of both worlds.

Or at least it should be.

I thought this would be an ideal set up for me, but the reality is there’s more pressure to be well on a particular day every week.

This isn’t achievable when you’re chronically ill.

I cannot guarantee that I can always go into the office on the same day every week.

I might not be able to leave my house to go to work.

But that shouldn’t be a problem. 

We have ample evidence that remote work is both efficient and effective. So why is there such a push to go back into offices?

I’ll be the first to hold my hands up and say that, in my case, a lot of the pressure to be in the office is internalised. There has been no pressure from my employer, who has been incredibly accommodating. It is my fear that people will think I’m not trying hard enough.

That I don’t care. Or I’m lazy. Or any other of the million ableist messages that I’ve internalised. 

Working when you have a chronic illness is something of a minefield; one wrong move and it can all blow up.

But that doesn’t mean that it will. And there’s no point living as though it will.

All I can do is try my best to let go of all the internalised pressure and make my job work for me. Whether or not my coworkers think I’m lazy doesn’t change my reality. 

I know that I’m not and that my health places limitations on how I do my job.

That needs to be enough. 

I need to be enough.

However, the real problem is with work places reintroducing unnecessary requirements for employees to be in an office. The pandemic has shown how to successful remote working can be and given us methods to increase accessible opportunities for disabled people.

Remote work is the key to me being able to work full time. I cannot make it into an office 5 days a week, but I can make it to my laptop.

More and more job adverts are shifting to a required hybrid model, particularly at entry level, but this fails to consider situations where a fully remote work option may be the only accessible option.

I understand that a hybrid model may be most able-bodied people’s preference, and there’s nothing wrong with that. Advertising the flexibility of your hybrid model is great, but you need to make it clear just how flexible it really is.

By hybrid model, do you mean I must be in the office 2-3 times a week or can I come in only when I’m able?

If I need to work remotely 100% of the time, will that be a problem?

Because if so then your workplace isn’t as accessible as you may think it is.

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Read more of my thoughts on disability and chronic illness here.

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Am I Disabled?

And who does or doesn’t count.

Chronic Illness:

As someone suffering from a chronic illness, whether or not I ought to consider myself disabled is difficult question to navigate.

When I was first diagnosed, it felt like a land-mine of a question, with so many conflicting opinions surrounding me. I was at a loss.

For a long time I had no idea what was wrong with me, how long it would last or how to manage it, and that had to take precedent over personal identity questions.

But that didn’t stop it always buzzing around my brain.

I have days where I can’t get out of bed because I’m in so much pain but I also have days where I can go about day-to-day life with minimal impact. So without a diagnosis and having a condition that’s constantly fluctuating, I had no idea where I stood.

When I need a stick, I definitely felt disabled, but when I was wearing heels and dancing in a club then no, I didn’t.

However, I ultimately realised that didn’t matter, what mattered was that my chronic illness was limiting my life.

It was disabling me.

And I don’t say that as either a good or a bad thing, I say that just as a fact. I had to stop running, I need grocery deliveries, sometimes I can’t cook my own meals. None of things are bad, they are just my reality.

So, yes, my chronic illness does make me disabled.

Autism:

This is the one I am still grappling with and truly do not have an answer for.

I know that a lot of autistic people consider themselves disabled, and I fully support that.

However, I am still very early on in identifying as autistic and figuring out what that means for me. It took me a long time to identify as disabled when I first became ill and so I am allowing myself the same time with autism.

There is no rush and no pressure to figure this out, and that’s something I have learned from experience.

Maybe in a year I will consider being autistic a disability, or maybe I won’t. Either way it’s fine, I’ll just wait and see how I feel as I figure out what it means to be autistic, for me.

So am I Disabled?

Yes. I am disabled.

I know this because my life is regularly altered by my health. I face various limitations as a result of chronic illness and wider society is not set up in a way that is always accessible to me.

But I also know this because it is how I feel comfortable identifying. For a long time I didn’t feel comfortable identifying as disabled, adn that was ok, I was still figuring my disability out.

Now I see labelling myself as disabled as useful and empowering. It allows me to tell others that I may have additional access needs and it lets me connect with other people that have similar experiences.

I am disabled. And that’s a good thing.

I Am Angry…and I am Sad…

The Disability Wage Gap in the UK

I started my current job in June and I have taken 5.5 sick days since I started because I have a chronic illness called Functional Neurological Disorder.

My workplace has a sick pay policy which means that during my first six months, if I exceed 5 sick days I no longer receive full pay, only half pay for any sick days taken.

I was informed of this after I had to take 2 sick days because I was having 20 seizures in a day. 

20 seizures. 

I think most people would take more than 2 days for that. But I knew that I couldn’t, I knew that taking more than two days wasn’t an option for me because my sick days are like rations that I have to carefully measure and parcel out only when I am on the brink of starving.

And that was before I was down to half pay. When it was only because I couldn’t have my employers thinking badly of me, believing I was slacking or lazy. Now it’s financial.

I earn a measly £21,000 salary and I live in one of the top ten most expensive places to in the UK, which means that losing half a day’s pay makes a noticeable dent in my monthly income. Ironically, the disability pay gap is also highest here, in the East of England.

I cannot afford to regularly lose out on half a day’s pay.

I also cannot change the reality of my disability.

It is unpredictable, uncontrollable and worsened by stress. So where does that leave me? It leaves me financially worse off. It leaves me earning less money because I am disabled.

Sick pay policies that reduce your earnings are ableist. By telling your employees that they will not receive full pay if they take too many sick days, you are discriminating against disabled employees.

Nobody can control when they get sick, and disabled people are even less able to prevent days off but this does not mean they cannot do their jobs or that they deserve to be paid less. 

I average at 1-2 sick days a month. This does not mean I cannot work full-time or that I cannot do my job, so why am I being paid less?

2020 research from the Trades Union Congress (TUC) shows that the current disability pay gap sits at 20% in the UK. Non-disabled female employees earn £1.53 per hour more than disabled female employees, and that’s without accounting for the impact of race (Louron Pratt, 2020).

This is the result of inaccessible work places, inflexible hours and discriminatory sick pay policies, as well as many other things.

Over 18% of the UK population suffer from a long-term illness, impairment or disability, that’s more than 10 million people, and those numbers are set to rise in the wake of the pandemic. Disabled people are the largest minority group in the UK.

So why aren’t we being paid the same as our able-bodied colleagues?

Why did I pay £35 to have 20 seizures in a day?

And why don’t people care?

***

References:

https://www.st-andrews.ac.uk/hr/edi/disability/facts/

Louron Pratt, 2020, https://employeebenefits.co.uk/disability-pay-gap/#:~:text=On%20average%2C%20non%2Ddisabled%20male,earn%20%C2%A310.20%20per%20hour.