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Disabled Access Day: Access at Work for the Chronically Ill

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It’s Disabled Access Day weekend, woohoo! On that theme (although a slight tangent, as I am wont to do), I’d like to take a bit of time to share something that’s been on my mind over the last few weeks: how we think about and understand accessibility, specifically in terms of work.

Firstly, I’d like to apologise for my lack of posting this year. I’ve been working a lot more than usual, trying to juggle all kinds of freelance work with my own projects. My local council also made my doctor change my morphine patches (budget cuts…) and my pain levels have shot through the roof. I’m sleeping on average 5 hours less a night. But, y’know, they say the patches are no different. Soooo….Yay. Life.

Anyway! I write this in my sleepless delirium, I hope you enjoy.

Recently, we’ve been seeing more and more companies pledge to put more money behind training and hiring disabled people, with Channel 4 and the BBC leading the way. This is really and truly fantastic, especially since the employment gap for people with disabilities is, according to Scope, twice the national average.

Whenever I hear the news of organisations putting more money into disability funding, I get really excited because I get a little glimmer of hope that I may finally be able to find a stable, secure job, with the chance of having an actual career. Y’know, with progression, benefits, sick leave, and not having to rely on the insecurity of freelancing to pay my bills.

A lot of people talk about freelancing as if it’s the holy grail for sick people. And I agree up to a point. Freelancing has enabled me to pick and choose the work that I do, and mostly do that work in a way that is best for my health. I’m able to work consistently because I’m so strict about working from home.

That being said, I feel like I’ve been forced into freelancing because there aren’t jobs out there that are suitable for me. Just because freelancing is an option, it doesn’t mean it’s a good option for everyone, and shouldn’t be used as an excuse for employers to not get off their arses to do something about accessibility.

Someone said to me the recently ‘well, people can be artists, and write, and sell jewellery!’. There are so many disabled people, not everyone is going to be able to make money from writing (it’s not easy for healthy people!) What about people who aren’t able to scrape by on what they can do online? Should we be left out of the job market and all be forced to open an Etsy shop because it’s too much hassle to figure out how to work a bit differently?

I’ve been very lucky that most of the work I’ve got in the last four years has come from recommendations. But if I were to lose one of my current freelance jobs, I’d be in trouble, especially because I’m not well enough to do the networking it takes to find more.

Navigating job sites is a nightmare. I’ve kind of given up. I used to scroll through one that I got a lot of great opportunities from when I was younger, and everything is full-time or in person, or both. It’s really frustrating seeing positions that are really exciting, that I could do well, only to know it’s not worth going through an entire process to know I’m not well enough to do the job. I really don’t have the energy anymore to be like ‘Hi, I’m awesome! I’ll do great work for you! I just need to work flexibly from home all the time”. I still get prospective job offers sent to me by email thanks to recommendation, and I literally get ignored when I tell them I can’t work full-time in the office. It’s incredibly disheartening. It makes you lose confidence in yourself and your value as an employee (and human being).

I’ve spoken to people who work for big freelancing agencies (through one of my jobs) and they admitted that most of the work that they hire for is in-person. And even for the work I do do, as a freelancer, I can’t take time off because I don’t get paid, and I’m constantly on edge, not knowing whether I’m suddenly going to be out of work and not well enough or able to find something appropriate. Resting is just as important as working, but that’s time I don’t get paid for – so security and well-paid work is even more important.

And what if I hadn’t had internships and jobs and opportunities when I was still well enough to do them? To gain skills during and after university, and those experiences that allowed people to pass work over to me and work freelance? I’m scared and stressed every day about my future, and I’ve got it pretty good compared to many.

And this comes back to accessibility in jobs. I can work, if I do so in a very particular way. But I can’t work if the jobs aren’t there for me to do.

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Many of the schemes that are touted as accessible are generally accessible for what I like to call ‘healthy’ disabled people. By that, I mean there are things that can be put in place to help them work – from making buildings wheelchair friendly, to getting in the right technology and assistants for blind and deaf people. I’ve spoken to a couple of amazing organisations that say they run schemes with a disability charity that I could take part in – but again, these were full-time and in-office. My explanations of how they could be made more accessible for me were ignored.

There’s a very big difference between making a workplace more accessible and finding work that’s accessible for people who can’t *show up* in the traditional way.

For me, it doesn’t matter how accessible a building is. Yes, lifts and ramps are nice (my poor knees don’t like steps), but in order to work it has to be from home. It has to be part-time, it has to be flexible, and it has to be done online.

Chronic pain and fatigue are incredibly difficult to manage, especially due to their fluctuating nature. I may be able to go into an office for half a day, but that may mean I’m knocked out for the next two days (or sometimes weeks). Would you rather I work consistently for a bit every day, getting my work in on time, or only be able to work a few hours a week, totally knocked out and taking time off? The funny thing is, I know from having worked both ways, I’m damn more efficient when I work from home. Must have something to do with Robot Bed.

I’ve lost out on so many opportunities and things that I’m more than qualified to do because of my health. I’ve had to leave pretty much every ‘traditional job’ I’ve ever done. It’s not fair. I’m damn good at what I do, but I feel like I’m trapped, left out of big opportunities and organisations because I can’t be there in person. I see all these jobs that I think I’d be great at, but they’re just not accessible with my health limitations. And crazily, some of these are even at big health charities!

Recently, I can’t stop thinking about my unfulfilled potential. How I’ve got so so much to give, and yet I’m forced to be stuck in bed behind a screen, scraping by and trying to build a career for myself somehow. Constantly made to feel like if people deign to allow me to work from home that I’m being done a favour, begging to work in a way that means I can do the very basic thing that an adult should expect to be able to do: work.

The only thing standing in my way is the lack of opportunities out there for people who are chronically ill.

Look, I’m not unrealistic. I’m not saying that I could do a job that’s required to be in-person, full time. I totally and 100-percent understand that employers have a job that needs doing, and there are many jobs that I’d simply be too unwell to do. I’m not talking about those kinds of jobs. But there are so many that I could do remotely, even if it was specific project based. And that’s not asking for special treatment. To me, accessibility is putting things in place to allow sick and disabled people to participate and have the same opportunities that healthy people take for granted.

When I was at Virgin Unite, my contract wasn’t renewed after 8 months of being off sick, but I knew at that time I just wasn’t well enough to go back. But when I was working, it was mainly from home. They let me do what I needed to do. Just so long as my work was done well and online, I could do it flexibly. I was able to get a cab to work once a week for meetings, or conduct them on Skype.

If the government and employers are serious about closing the employment gap for disabled people, they need to think bigger and take into consideration the incredible talent pool that they’re pretty much leaving to flounder. #DisabilityWorks must work for everyone.

Thinking you’ve met you accessibility quota by installing a lift, some ramps, and getting some new technology is not enough. By the way, I’m not in any way saying that these developments are a bad thing. They’re fantastic, and sorely needed. I just don’t feel like they go far enough to help people in a situation like mine.

As a society, we’re still so obsessed with ‘putting the time in’, with your dedication and value as an employee marked by the hours you slog away behind a desk rather than the quality of your work. As freelancers, we’re financially penalised for efficiency, and in the ‘real world’ there needs to be a shift in thinking.

I remember being in jobs when I was younger, getting my work done during the day with hours to spare. I’d kill the rest of my time just scrolling through news sites (in one job I remember joking that I finished the internet) and talking to colleagues until I went home. It’s such a waste of everyone’s time. Being in an office 9-5 is a stupid construct for many jobs. When I work my hours from home, I guarantee I’m doing more work than my colleagues in the office, as I have way less to be distracted by. And why should I need to work during those specific hours (if it’s stuff that doesn’t require me talking to other people?) I often do work early morning or late at night, or whenever my energy and brain power is highest. And financially, you should be paid for the end product, not the hours spent on it (the quality of the work is not necessarily better just because someone is naturally super slow at work).

I repeat. Just so long as the work gets done, it really shouldn’t matter how or where.

There’s no excuse, really. Not if the will was there. It takes some creativity and thought, but I’m sorry, it’s 2017. With the internet, all the amazing technology out there, and even things as simple as Skype and Slack, there’s absolutely no reason why we should remain left out. There are so many jobs that can be done behind a computer screen, and while I recognise that there are certain things I’d not be able to do, I refuse to believe that there aren’t a bunch of jobs out there that can be tweaked for people who need to work in a slightly different way.

It shouldn’t be such a struggle to be able to work.


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4 Comments

4 Comments on Disabled Access Day: Access at Work for the Chronically Ill

  1. L
    March 11, 2017 at 9:43 am (2 weeks ago)

    I’m not surprised that some of these jobs were at health charities, Natasha. One of my worst experiences of this was at a disability-related team of a national organisation. The “healthy disabled people”, as you call them, were given the equipment and assistants needed to do their jobs in-office, but I with my chronic health issues wasn’t allowed the remote access I needed to be able to do my job on days when I couldn’t physically get to the office. I’m still not sure to this day why – some of the “healthy disabled” people were allowed to do some tasks from home and did have that remote access – I never understood that either. I also fell foul of the duty of care issue – they, apparently, had a duty of care to make sure I wasn’t working when I was unwell, even though I was perfectly willing and able to; heck “unwell” was my default state even when I *was* “well enough” to be in!

    Eventually my contract was terminated because I couldn’t be reliable enough. I bent over backwards to make sure I could do the job that I loved, but had very little in the way of the support in able to do so that was afforded to the “healthy disabled” team members.

    To me, it felt like disability hierarchy was well and truly in play somewhere that it really shouldn’t have been, and it pisses me off to this day.

    Reply
    • Natasha Lipman
      March 11, 2017 at 9:46 am (2 weeks ago)

      Hi L, I’m so sorry to hear about your experience, but sadly it doesn’t surprise me.

      I find the duty of care thing really funny, I’ve said exactly the same thing as you ‘unwell is my default’ – if I didn’t work through being desperately ill, I’d end up doing nothing.

      It’s really upsetting that even in places where they’re starting to look more at access issues, people who have ill-health, that could work if just a little thought went into it, still are overlooked. You’re right, there’s definitely a hierarchy, and while I think it’s important that these changes are made, we’re still left feeling like we can’t participate, even though we’re told that we can, in theory.

      Reply
  2. Silvia Logan
    March 14, 2017 at 2:26 am (2 weeks ago)

    Natasha, I feel that people with disability illnesses are not always treated fairly. It is too bad that many of those jobs in person seem to be associated with good physical health. I think that feel with disabilities such as chronic illnesses should be treated as equals.

    Reply
    • Silvia Logan
      March 14, 2017 at 2:39 am (2 weeks ago)

      I feel that it is not fair that people with chronic illnesses had to be treated differently than people without disabilities pertaining to jobs. People with disabilities such as chronic illnesses should be given the opportunity to work and be treated fairly.

      Reply

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