Tackling representation and encouraging disability advocacy; Here's why we LOVE Sick In The City
Rachael Mole is a force of nature, having recently relaunched Sick In The City (SIC) in order to help bridge the disability employment gap by making workspaces more inclusive.
SIC offer work experience placements and training for disabled and chronically ill people in Social Media, Marketing and Community coordination.
I sat down with Rachael to discuss the relaunch of SIC and what businesses can do to be more accommodating and inclusive. We also discussed why we should all be outraged by the issues the chronic illness and disability community have to contend with every day - workplace and medical discrimination, lack of financial support and institutional bias.
MR: How did you feel once you decided to take the leap from City Girl Network to focus on Sick In The City?
RM: Um, it was definitely intimidating. I went from being in a partnership and having somebody to bounce ideas off of and having that sense of safety almost so going solo was terrifying, but I needed to do this. It was my dream and had been for a while to do something within the disability space. And I knew that if I didn't just go for it now, then I would probably just keep pushing it aside. I remember when I decided to just go for it, it was literally at 2:00 AM one night. I was like, you know what, I'm just going to buy the domain and I'll just see what I do with it - I talked myself into it and I’m so glad that I did. When I got up the next morning I was like, oh my God, what have I done? I can't do this. And it took a couple of weeks for me to map it all out and really get my head around it.
MR: Well I'm loving the content that you're generating. What inspired you to start SIC?
RM: So, I’m an able-bodied presenting person and although that has given me a lot of advantages over others in the disabled community who, you know, look disabled - to put it in a bit of a crude way - the fact that I still came up against these barriers is just so telling that disability discrimination is just everywhere. If I, with all of my privilege of being able to afford private healthcare, being someone who looks well, being articulate, who has an amazing support network. If I was struggling, then what about all the people who didn't have that? What were they going through?
And it took me years, you know, of really getting involved in the online community. The disability community online is just amazing. It's one of the most incredible communities I've ever been a part of and kind of navigating life with a disability and really coming up against not just barriers, but also a complete lack of resources around super simple topics like career education. You know, we get given that in school for free, but when you've got a disability you’re told you might have to lower your expectations. We’re also constantly being told what an inspiration we are and how brave we are on top of being told to aim lower. On one hand, we're being told we're amazing for purely existing and then in the next breath it's like, but actually, we don't want you to work for us.
I didn't get the education that I wanted. I wanted to do my A-Levels and go to Uni and live the whole Oxbridge life. I'm absolutely an academic at heart, but my health meant that I had to drop out of college so I couldn’t take my A-Levels. So I'm left at 20 years old, wanting to prove myself, but being turned away from every door when it comes to accessing education. I ended up doing my degree at the Open University. I decided to study biology and mental health, just so I could talk to doctors and have them listen to me. That's it. That's the only reason why I studied for four years. I actually don’t use my degree in my professional life - it was purely so I could advocate for myself and enter the workforce. I lasted three months in an office, this was pre- lockdown. I was working 9-5, Monday to Friday in an office that claimed to be accessible, but really wasn't. It claimed to be inclusive but really wasn’t - they never actually listened to me and my needs and I was fired basically. They said, thanks but you've actually failed your probation and we have decided to terminate your contract. It was purely because they didn't want to spend the time and energy accommodating my needs, which they promised to do during my interview.
MR: Isn't that illegal?
RM: Well, yeah, but it was in the middle of the first wave of lockdown, everything was happening. I was at the point where I was in so much physical pain due to the amount of stress it was causing me and was close to handing in my notice anyway.
In four years with City Girl Network, I grew our network from 2000 to 40,000 women. If I can launch an online magazine that publishes daily, if I can run a volunteer network, with over 250 women, upskilling them while keeping them engaged, but I can't last three months in the absolute basic Junior Copy Editor position of an agency, what are workplaces doing wrong? You know? If anything, this past year has taught me that by accommodating people and being truly flexible while working you can accomplish so much. I came away from that thinking experience thinking, I don't think I can ever work for anybody else ever again.
MR: You recently rebranded SIC, what can your followers expect from your page now?
RM: I mean, when it first launched Sick in The City it was actually as my personal blog and I think that lasted about three months before I realised I don't like being the centre of attention and I wanted to open it up because there are so many voices in the disabled community that need the platform. It's not just my voice. And just having my voice presents a very one-sided view of disability. So many voices need to be represented because we all go through different things. So, I then opened it up as an online magazine, chatting to friends and networking with businesses and just feeling out what the disability industry is, at the moment.
I realised there was this massive education gap which made me think of what I needed and I remember wanting a career and there not being any information about, or support for, people like me, people with a disability. There's nothing really out there that is a positive representation of what having a successful career as a disabled person even looks like.
After City Girl Network, it just made sense for me to launch it as a women's network, you know, that was in my comfort zone. But recognising that this is a problem for everyone and the more inclusive we are as a business, the more we can really push that in our educational material. So, we're still Sick in The City and alongside our education for disabled people in our magazine, which publishes weekly, we've launched six-month training programs that are either hired to train or they are volunteer positions. But that's only half of the story.
We can create the most brilliant workforce of disabled people, but if the brands and the businesses and the companies are not ready to accept these people, then we've got a problem. So it’s about what can I do to create a circular economy where we are doing the training and once they leave they're ready to walk into a junior position. What can we do to ensure that the door is open for them to walk into?
MR: During the course of creating SIC, what have been some of the ups and downs that you have encountered?
RM: Oh gosh. Um, well the week I launched two of my current volunteers emailed me and said, I want to join and that was unexpected because I was expecting to slug at a desk for months before getting someone through the door. That was the validation that I needed to keep going.
It's just amazing watching it grow and hugely motivating, but then the downside is I have to keep reminding myself that I'm disabled. I have to take days off if I don’t want to burn out, that's it because nobody else is going to run this business for a couple of months while I recuperate. So, I really have to pay attention to how much I'm working on the business. And the really sad thing is that when you're an entrepreneur, you know, it’s a grind. And the narrative behind it is: If you're not pulling 24-hour shifts, you're not dedicated enough, if you're not investing every ounce of energy into it you’re not doing enough and that is absolutely everywhere when it comes to entrepreneurial support. But the thing is on top of that, it's like, you’ve got to think about your brand as well and if you're not adhering to that, then it's like, you feel like a fraud - it’s something I’m working on.
MR: I know what you mean, I feel the same way. I am all about self-care and looking after your mental health but sometimes I find myself pushing myself way too much because I get so laser-focused and feel like I need to get my list done even when I’m in pain. Like the other day, I must have been working for 12 hours straight and my TMJ was flaring up but I carried on working through the pain because “I was almost done” which isn’t healthy. My husband had to take my laptop away. So, finding that balance can be a challenge sometimes.
What do we have to look forward to with SIC?
RM: So much, hopefully. We really want to become synonymous with career support for the disabled, we want SIC to be the place you go for support regardless of where you are in your career. I want people to come to us if they have been unable to access education, need help getting into an entry-level job or just looking for general help and support on getting to that next stage of their career. I want to be surrounded by people who know what you're going through.
Through our online communities like Instagram, we hope to provide that kind of content to give people the recognition that what they're going through isn't because they're not good enough in the workplace, it's because their workplace hasn’t adapted to support them. We hope that if businesses feel that they are not reaching their potential with access and inclusion SIC is where they'll go for training and consultation.
So over the next few months, we are sponsoring the Dark Coffee Mental Health meetup, which is an amazing monthly meetup bringing together business and mental health minds from across the UK where we chat for an hour about mental health. Another thing that we're launching soon is our mentorship programs. So if you are really confident in your digital field i.e. marketing, social media or PR sign up to become a mentor. Anybody who joins us as a trainee will be matched with the mentor who most aligns with their own career path and to say thank you to the mentor for giving an hour a month mentorship and support, we'll offer them discounted or free tickets to our Sick in Business events, which we'll be launching and also offer them support with hosting their own events through us, so upskilling our communities. So we're looking forward to launching those kinds of events over the next few months too. We will also be launching a bronze, silver, gold accreditation for businesses who work with us and prove that they are accessible and inclusive - they will be awarded accreditation that they can then put on their website and we will hold a database of everyone who has been awarded them. So anybody looking in the disabled world for a job will know and be confident that these companies are going to support them. We will continue to update the page by making sure we keep in touch with these companies on a yearly basis to make sure that they continue to meet our criteria.
There are a lot of companies that aren’t truly accessible or inclusive. Places like Glassdoor that give information about companies don't have the information that a disabled candidate needs to make a decision about a company. When you're disabled, that decision of whether to accept a job or not I know it may sound dramatic, but it literally could be a case of life and death.
MR: Information is gold and unfortunately it isn’t always readily available to us - what do you think we need to do to make information about employment rights/disability benefits and chronic illness more visible to those who need it?
RM: I agree there isn’t enough information about employment rights, disability rights and chronic illness, we need more visibility and more information. I mean a simple answer would be to hire an Equality, Accessibility and Inclusion Officer, especially for big companies but sadly that doesn’t always work. I’ve heard stories about Officers in the NHS being completely dismissive to people with disabilities so ultimately, I think it comes down to being held accountable and people with disabilities knowing their legal rights, knowing they have the power to get the accommodations they need from their workplace. I also think companies shouldn’t be afraid of change and rather than taking it as a personal injustice actually taking the time to stop and think about the benefits of having a fully accessible company.
The spending power of disabled people, according to the Purple Pound survey in 2017 was 240 billion, that’s how much money companies in the UK are missing out on. It’s never too late to make changes to your business, the disabled community talk and if we think your company is genuinely doing everything to make their business accessible as possible we will spend our money with you because it is after all a circular economy and you will be opening up your business to a broader demographic and talent pool. You’ll also be creating a working environment that’s not just better for disabled people but better for your entire company and in turn you’ll be creating a great company culture, great company press and sentiment driving more people to your service or product.
MR: Do you think there is enough support available to people with chronic pain/illness or disabilities in spaces outside workspaces?
RM: There's not enough support available. Universities are the most inaccessible organisational structures I've ever encountered in my life and I know that resonates across the disabled community. There is no doubt in my mind that as disabled people, we are set up to fail and we are set up to be forgotten - continuously ignored by our employers, our teachers and our government made to feel like second class citizens. And if there's any absolute proof of that, it’s the treatment of disabled people during the pandemic. I get emotional just thinking about it. I mean, in what world can we claim to be a progressive first-world society when we are literally killing people because they don't fit in with our cultural, societal norm. You are not deemed worthy unless you look a certain way, behave a certain way or are from a certain family.
Education and training is something I felt I missed out on due to lack of support and training in those fields which is why it’s so important to make things better and I hope with SIC.
MR: Your Instagram channel is so informative, I love your Diagnosis Journey posts, they really highlight how far we have to go when diagnosing chronic illness and the level of support available.
What additional support do you think is needed?
RM: I mean, again, if the pandemic is going to give us anything, it is research into chronic fatigue due to long COVID and one of the conditions that long COVID has been proven to cause is postural tachycardia. The demographic which suffers from postural tachycardia the most is young women between the ages of 16 - 30 and research has been denied because it's not being seen as a big enough condition or an impactful enough condition. It's a condition I have and I was told I fainted because I was a hysterical young woman.
MR: Oh my God. Is it like the 1910s!? That’s so wild…
RM: Yeah, I know, apparently I did it because I wanted attention and I wanted to manipulate my mum.
I was completely medically gaslit as a young teenager to the point where I even started to believe I was making it up and I’ve completely blacked out and can’t remember being 18 or 19 years old. That's just a blocked memory for me because of the trauma I went through with doctors, it reaches a point where if you've had enough medical professionals telling you it's all in your head and you're making up for attention, that you start to believe it, even though I was in agonizing pain and my heart was not strong enough to pump blood back to my brain when I stood up, I believed that was all me and it was my fault. So receiving that diagnosis saved my life. In terms of the narrative within the chronic illness and disability community it’s always the same every time I’ve spoken to a woman with an invisible disability, whether it's PCOS, IBS, IBD or endometriosis it's that it doesn't exist, it’s all in your head and at that point, they stop looking.
The institution that is giving that narrative is the outdated doctors who are not bothered to update their medical knowledge. That is exactly why I did my degree so I could understand what my doctor was talking about and confidently ask them questions. When you become chronically ill you become dependent on the voices who sound the most authoritative and that includes doctors. It’s important to remember you have the right to ask questions about the medication that they put you on and that if you’re not comfortable with the medication or its side effects being able to ask your doctor for an alternative.
MR: What has been the most shocking thing you’ve learnt from your followers or your research?
RM: I think I've become so desensitized to being let down that it's shocking. I'm the founder of SIC, I speak openly about invisible disabilities, I speak openly about the fact I am in pain every single day and I'm on post-surgery painkillers daily to manage it. But people still question whether I'm disabled enough to be a representative of my community.
MR: Yeah, I have the same issue with This is Impt because my husband's white and I've had people tell me I’m not black enough - although I’ve heard that most of my life, predating my relationship with Dion. I hate it because it can be so disheartening to be told by people who look like you that you don’t fit.
RM: It's about presentation and you know, I'm not, or I don't look disabled enough to apparently be an advocate for disabled people. But who's told them that? It's the government, it's society, it's the media, it's all a narrative to make sure that the people who have the ability to have a voice, are demonized by those communities and shut down. At what stage does that help anybody? It doesn't.
MR: Yeah, exactly. Like with disability payments and people having to prove they have a disability. I remember reading an article where this woman was fighting the government about her disability payment because they retracted it claiming she was well enough because they'd seen pictures of her attending a work function and she was standing but she had a chronic pain disability. She tried to explain that although she suffers daily, some days were better than others but that shouldn’t take away from the fact that she is disabled and she is in pain every day.
RM: I genuinely do live in a state of constant anxiety because I am on personal independence payments and that is to cover all of the costs that being disabled gives and the number of therapies, physical and mental therapies that I have to go through every month to remain well.
I live in fear that I'm going to be called a fraud because I can now walk without a walking stick, maybe half a mile. I mean, never mind I'll have to sit down a couple of times, catch my breath, and then I wouldn't be able to do anything the day after, but there is that anxiety over, like how disabled are you actually? And it took me two years to get that payment because I wasn't apparently disabled enough to get it. We can have a whole other conversation about DWP assessors being unqualified to judge whether somebody actually has a disability. I was told before the assessment to not brush my hair or put make-up on because they will judge that as you being competent enough. And in my report that we got back after I got declined for the first time, the comments were that I held that eye contact throughout the entire thing which meant I was obviously competent and had the mental capacity to plan the journey to London. Even though I had absolute severe anxiety about public transport because of my fear of collapsing at a station and being completely vulnerable. I remember telling them that I couldn’t cook for myself because my wrist would dislocate and their response was to buy lighter saucepans.
MR: Oh my God. Who even thinks like this?
RM: You know who thinks like this, people who are rewarded with double payments for every person they decline.
MR: That’s insane! The system, the way that they do things and the way they communicate with people is beyond flawed and needs to be improved.
RM: Well, it's set up for people's fail because they don't want a payout.
MR: What advice would you give to someone who is trying to get diagnosed and is suffering from chronic pain?
RM: If they think that they know what they have, contact a charity organisation for the condition and ask them to provide any information that they can take to their doctor. Lots of charities have pamphlets and downloadable resources that you can print out and take to your doctor. That would be my first piece of advice. The second piece of advice is, do not be afraid to use your voice to challenge your doctor about your medication, diagnoses, treatments and tests. You are the only person who is going to fight for you and you need to make sure that you do yourself as much service as you can.
You have to throw ego, imposter syndrome and other people's opinions of you out the window because it's going to be tough. You're going to be told you are a hypochondriac. You're going to be told that you are annoying, but you have to do everything you can to ensure that you get the right diagnosis. You can request a referral to any doctor, even if it's in a hospital, two hours away, three hours away, you can request that from your GP. If you are not hearing back from your doctor, Google them, find out the name and email of their secretary and email them every single week until you get a response, it will be annoying.
MR: What are some of the misconceptions about chronic illness or disability that you wish would change?
RM: Simply surviving does not make us inspirational. And I think using that, so glibly, completely dilutes the achievements of disabled people who truly are inspirational because they have done something above and beyond. Just like we would use the term inspirational for an able-bodied person. We use the phrase so glibly that it's diluted Its meaning and has become redundant.
I've been called brave for living in pain and it's like, well, what else am I going to do? Don't call me inspirational, for having a disability call me inspirational because I've started an entire company. I want to be inspirational for the impact I have on the world.
MR: Exactly! Like when I think of you I don’t think about your disability, I think Rachael’s awesome because of all the work she did with City Girl Network and creating SIC to help educate people and support people in her community. That's what I find inspiring about you and I love working with you and look forward to working with you more in the future.
RM: Thank you, that’s so sweet! I absolutely love working with you too.
MR: Name three things you can’t do without?
RM: Chocolate, specifically Green and Black’s salted chocolate, my support network, I wouldn't be here without them. I rely on them every day. Lastly, books, I couldn't live without them. They got me through the worst of my illness when I needed to escape to a fancy realm. They are also the only thing that convinces me to rest because I have to sit down to read and I lose myself in it and then I look up only to realise 6 hours have passed.
If you haven’t already heard of Elizabeth Scarlett (the brand), I’d be surprised.