Mathilda Mallinson: Helena, would you apply to a job that you were literally incapable of doing?
Helena Wadia: Only if I was a straight white man? I’m kidding. No, Mathilda. I wouldn’t, because that makes no sense.
Mathilda Mallinson: Okay, do you think it’s safe to assume within the realms of journalistic credibility that people tend not to apply to jobs that they’re incapable of doing?
Helena Wadia: I think we can allow that.
Mathilda Mallinson: Cool. I just want us all to remember that as we go into this week’s topic.
Helena Wadia: So, what is that topic Mathilda?
Mathilda Mallinson: This week we’re looking at disability in the workplace. So, in theory the UK has an accessible economy, meaning it is disability friendly. Businesses are legally obliged to make, quote-unquote, reasonable adjustments to accommodate disabled employees under the 2010 Equality Act. This could mean anything between bringing in wheelchair ramps or assistive technology or making working from home arrangements available. There’s financial support available from the government to do this. And there is legal liability if businesses refuse.
Helena Wadia: I noticed at the beginning of that you said in theory.
Mathilda Mallinson: The data says otherwise. Disabled people are twice as likely to be unemployed than non-disabled people, if you crunch ONS data for the final quarter of last year, like I decided to, that’s the Office for National Statistics. And I want to stress that this figure only counts economically active people, meaning it has already excluded people who are unable to work at all due to ill health or other reasons.
Helena Wadia: Right. So, if disabled workers are twice as likely to be unemployed than non-disabled workers, we evidently do not have an accessible economy. So why not?
Mathilda Mallinson: Well, remembering our assumption that people, disabled or not, tend to apply for jobs that they are actually able to do and considering companies are both legally obliged and financially supported to make reasonable adjustments to accommodate disabilities, isn’t it curious that companies are rejecting disabled people at twice the rate of non-disabled people?
Helena Wadia: I mean, curious is one word. I believe another word for it is ableist. Which is the word referring to discrimination against people with disabilities.
Mathilda Mallinson: But see, the thing is Helena. If you were to look at this country’s legal records, you’d think workplace ableism didn’t really exist.
Helena Wadia: Why is that? How many lawsuits about workplace ableism are we seeing?
Mathilda Mallinson: Let’s take an annual figure, the most recent reported, over the course of a year there were a grand total, across the UK, of 72 tribunals about ableism in the workplace.
Helena Wadia: That’s a very small number. What’s happening to the rest of them? If it’s not discrimination, why are disabled people struggling so much to access work? And then if it is discrimination, why is no one being held to account?
Mathilda Mallinson: That’s what I’d like to find out. This week, I will be speaking to people with a wide range of disabilities working in a wide range of sectors, asking them whether they have experienced ableist discrimination and if they have, whether the law protected them.
Helena Wadia: And I’ll see you back in the studio with some very special guests to discuss everything around this Media Storm.
Helena Wadia: Welcome to Media Storm. The news podcast that starts with the people who are normally asked last.
Mathilda Mallinson: I’m Mathilda Mallinson,
Helena Wadia: And I’m Helena Wadia.
Mathilda Mallinson: This week’s investigation: Ableism enabled: The loopholes in Equality Law. I’m going to start with a case that, after speaking to dozens of people on and off the record about their experiences of ableism, felt emblematic of what many people go through. Sophie, who’s using a pseudonym and voice distorter for reasons that will become clear, works in the NGO sector. She was thrilled when she landed a job at a company that self-presented as inclusive and diverse.
Sophie: When I had my first month probation I got some really good feedback.
Mathilda Mallinson: What she hadn’t yet told them was that she had a chronic illness and would really benefit from a small adjustment: one day a week working from home.
Sophie: When I told them about my disability, it was so awkward, like the vibe completely changed. The senior manager was like “this is a really big inconvenience. Your manager, she doesn’t work from home so I don’t think you should be working from home. You can’t access these directories.” So, it’s a really big inconvenience and they’re obviously directories that I could fully access, as most people have seen from working from home, you can access everything that you need from home. So, it was a lie.
Mathilda Mallinson: After this, she feels attitudes towards her changed.
Sophie: It was like looking for any mistake that I would make. Any minor mistake was really amplified.
Mathilda Mallinson: Did you feel that they were using whatever they could to build a legitimate case to dismiss you?
Sophie: Yeah, they were doing anything they could. Going through all of this was awful. My confidence was completely undermined. I would come in and just put headphones on and work at my desk all day, no one would speak to me. They had meetings about me without me. But I remember phoning my friend Amy in tears and being like, I just can’t do this anymore. I was so tired, just so tired from the whole thing. I was like, I just want to leave. But you know, she was like, “You can’t. No, I’m not letting you do that.”
Amy: I knew that if she did leave without a reference, she would get questions about it potentially at other jobs, and it just would not go away.
Mathilda Mallinson: Meet Amy, Sophie’s friend who pushed her to threaten legal action against the company.
Amy: I started to think I don’t think these people know what the hell they’re doing. I don’t even think they’re even aware of the basic obligations under the Equality Act.
Sophie: She literally threw me a lifeline then because I felt like I was just ready to give up. And the idea of doing any of that I just couldn’t. How fatigued I was how stressed I was, and how upset I was for the whole thing. I was like, I can’t do this. I had so much anxiety, I doubted myself. It’s weird when, like for this interview, when you look back at what was done, you’re like, obviously, there was a case when I first disclosed disability didn’t act on it for months – that’s bad enough in itself. Saying they didn’t have any resources without checking at all from the first conversation and we don’t have the resources but no evidence of checking for resources. The bullying behaviour saying that it’s more inconvenient over the amplification of minor mistakes
Mathilda Mallinson: At the time how long did it even take for you to say what was happening was discrimination?
Sophie: I felt like a fraud to be honest, thinking I had a case in that way.
Amy: It still makes me really, really mad because this is happening everywhere. You know, I mean, it’s horribly common, and you doubt yourself a lot. And sometimes you can actually know more from them.
Sophie: It’s weird. I think that for someone else, I’m more similar to Amy, I would be like so bolshie. And it was only when it happened to me, I felt powerless. Speaking to people, people are very, very hesitant to speak up for themselves. A lot of disabled people feel like frauds and don’t feel validated. Because I think that they worry that there’s someone else who’s got it worse than them. And they feel that they don’t deserve more of the resources and they shouldn’t take the resources for themselves. And the horrible thing is that at the end of the day, if I hadn’t gone through, if I hadn’t got that validation, that I would have been in pieces, my confidence. For so many disabled people, they won’t get that moment. And you they shouldn’t have to have that moment to know that what they went through was valid.
Mathilda Mallinson: You’ve just started a new job today. When you start a new job, how does that experience affect you? Does that affect your confidence?
Sophie: I didn’t have any confidence. I didn’t disclose my disability on any of the forms. I didn’t say anything about it in the interview and I just worried about it the whole time. So, I thought I want these adjustments. So then even when I spoke to my manager about it, I was shaking, and I was completely in tears, I really struggled. And I really felt like even meeting the new team, because I guess it wasn’t just the disability it was everybody’s attitude. The fact that everybody in that company thought that was an acceptable way to treat someone, it did something, I think deep down to undermine our confidence about who I was as person. If people liked me enough then why would people do that?
Mathilda Mallinson: Will you tell us? What came of the case? What was the outcome of threatening legal action against the company?
Sophie: I never had to reach legal action because we were able to reach a settlement. I left my contract early, but got paid for the rest of my contract, then a little bit extra. So, it wasn’t this huge settlement case. But it was enough for me to be able to give me the support to find my next job.
Mathilda Mallinson: And what was the condition applied to you?
Sophie: I’m not allowed to talk about it.
Mathilda Mallinson: The vast majority of cases and in settlements, with those who have suffered discrimination being paid not to talk about it. This makes the problem basically impossible to quantify. But from my research, at least, even being paid off makes you one of the lucky few.
Keryn Seal: Playing in front of 3500 people when you normally play in front of two men and a guide dog is incredible.
Mathilda Mallinson: This is Keryn Seal, Paralympian and former captain of the England blind football team.
Keryn Seal: The Paralympics in 2012 was a great watershed moment for disability sport and seeing disability as a positive thing. As soon as money and contracts started entering into it, we kind of noticed a culture of sort of financial manipulation. We were never really given access to the Professional Footballers’ Association, that’s the union that all professional players in this country sign up to. It was either sign it or go look somewhere else. I overheard a conversation where they were saying that they should be lucky to be offered the contracts that are being offered because they won’t do anything outside of football and in any case, they get disability benefits, so they shouldn’t really worry. It’s almost like an underlying tone of you should be happy to be here so don’t rock the boat.
Mathilda Mallinson: What would you say to the people who made those comments sitting here today?
Keryn Seal: Well firstly it’s very hurtful to those players and actually makes a lot of people think that maybe they’re not worth anything. But also, how can you put yourself out there as an advocate of disability sport, if those are your attitudes. Without representation, without blind coaches, without disabled coaches, you’re probably always going to come across views like that.
Mathilda Mallinson: The Football Association told Media Storm they had recently launched a three-year plan to raise awareness of disability football in England. They said: ‘the FA has a robust equality policy to encourage anti-discrimination, which forms part of our commitment to ensure everybody within football is treated with respect regardless of social background, or any protected characteristic.’
Another issue people face is that discrimination starts before you entered the workplace. The law in theory still protects you while you’re applying to jobs. But the burden of proof often doesn’t feel feasible. Izzy Jani-Friend is an accomplished journalist published in The Guardian, the FT and many other leading outlets. She has reported widely on the difficulties of applying for work as someone with cystic fibrosis.
Izzy Jani-Friend: I’ve found that when I have it on my CV, I don’t hear back from places. Or if I do hear back, then I say that I need certain adjustments to be made throughout the process of applying and they just ghost me and don’t reply. And that’s happened to me so many times. And it’s quite difficult because I can’t prove that it’s happening because of my disability. I think what they need to take a step back and realize that first of all, would I apply to a job I don’t think I’d physically be able to do? If I didn’t think I could do a role because it would put a strain on my health, I wouldn’t apply. I wish that it was okay for everybody to put their disability on their CV and not receive any discrimination or ableism from that. But unfortunately, they will and that’s inevitable.
Mathilda Mallinson: Not making reasonable adjustments is unlawful discrimination under the Equality Act 2010. This law obliges companies to make reasonable adjustments if someone is placed at a substantial disadvantage because of a disability. But there is a loophole. If businesses can persuade a judge that said adjustment is unreasonable, that it’s too costly or impractical, they don’t have to do anything at all.
Emma Vogelmann: I have lived experience of disability myself; I have a condition called spinal muscular atrophy and I have been an electric wheelchair user my entire life.
Mathilda Mallinson: This is Emma Vogelmann: policy advisor at the charity Scope, trustee of the Disability Law Service, expert in disability law.
Emma Vogelmann: I personally don’t know any disabled people who have gone all the way to a tribunal.
Mathilda Mallinson: So why is the law that was designed to protect disabled workers from discrimination, so inaccessible to them in times of need?
Emma Vogelmann: There’s an annoying term reasonable in there. So, it’s all very subjective. If the employer says, “oh well, we’re not able to make this reasonable adjustment because it would cost too much money or because this is a listed building. And we can’t make any adaptations,” it’s difficult for the disabled employee to be able to challenge that because we don’t have access to the same information. The other problem is definitely a confidence issue. There are so many little instances of discrimination that disabled people face every single day that it’s emotionally exhausting. And if you were to take up every one of those, it would be your full-time job.
Mathilda Mallinson: Equality law is frequently failing to serve its purpose and subtler forms of discrimination, such as implicit bias and microaggressions fall beyond its scope entirely, which is why Roxanne Steel, an accessibility and inclusion specialist, who has cerebral palsy herself, insists we cannot rely on it to tackle ableism at work.
Roxanne Steel: I think the thing that you’ve got to remember is that actually, the Disability Discrimination Act didn’t come in till 1995. So actually, that law to protect me from being discriminated against, wasn’t even in place when I was born. It is younger than the Lion King. So basically, people were quite enabled and happy to sing the ‘Circle of Life’ before they understood that people like me deserve rights. So why would I expect the manager that I work with to potentially understand this? While I do think there is space for legal recourse, we do have to stop jumping to that solution. We need to kind of sit back and consider why society perceived me as being potentially the problem or the barrier. And that’s to do with the way that society looks at disability. Women are often seen as incompetent until proven otherwise. And men in general #NotAllMen will seem confident unless proved otherwise. And this goes very much the same for someone with a disability like myself. Most workplaces do work, unfortunately, on a deficit model. So, the idea that, you know, there are things people can’t do, rather than a celebratory framework or an asset framework and it stops people in my workplace from actually benefiting from my own assets, and my own lived experience. It’s about you stepping back, self-reflecting and saying, ‘Is this the attitude I want to have?’
Mathilda Mallinson: The consequences of ableism are real and ruthless.
Alanna Richards: Being paid to be quiet by companies who know that they’ve messed up and discriminated against you? It just feels wrong.
Mathilda Mallinson: Our next speaker is Alanna Richards, marketing director and new mum. She has had her fair share of workplace discrimination
Alanna Richards: It makes you scared to approach employment because you just feel like you’re going to be met with the same discrimination. It makes you feel like you don’t have a place there and you don’t belong, and employment isn’t for you, and you need to find another way to survive. But the reality is that there aren’t many other ways to survive in this society. So, I ended up doing Airbnb for my house, even though I wasn’t supposed to. It was so against my contract. I was only renting. I had to pretend to own the place just to make a basic living wage. I was in survival mode x1000. I wasn’t eating. I didn’t have enough money for food. The different situations I’ve been in, looking back, that all stemmed from ableism and the barriers to entry for working as a disabled and chronically ill person, it blows my mind. And that’s what these employers don’t understand. There are real consequences for not making space for accessibility and not prioritizing it.
Mathilda Mallinson: There is welfare designed to financially support disabled people. PIP, or Personal Independence Payment, is an allowance designed to help people with the added day-to-day costs of having a disability, like needing taxis or buying medical supplies. But in contravention of their manifesto promise, the government appears to be cutting the PIP budget and scrapping plans to reform its assessment process, which has been widely criticized by people affected. Among those people is Maria Kalinowska, a photographer and creative director who was chronically ill with endometriosis.
Maria Kalinowska: So, I applied for PIP a couple of years ago, and was rejected, and I appealed, and that was also rejected. And I appealed again, and that was rejected. I kind of feel like I’m deemed too sick to work a normal job because I need to have flexible hours. I need to have the option to work from home.
Mathilda Mallinson: Okay, so yes or no question. Do you feel like our working culture and our economy is, in your experience, accessible for people with chronic illness and or disability?
Maria Kalinowska: Absolutely not
Mathilda Mallinson: Another yes or no question. Again, in your personal experience, do you feel like our welfare system is adequately set up to compensate for that?
Maria Kalinowska: No, I don’t think so. You know, I think there’s this mentality of like disabled and chronically ill people, they just want to live off the state, they don’t want to work, they just want to get the money. Nothing would make me happier than to be able to work in the same way as a healthy person. That is, that would be the dream. But as it stands, people who are disabled and chronically ill, they just fall through the gaps. I know a lot of people, and myself included, who have done jobs and worked until it made us so ill that we then couldn’t do anything else for months. But in that moment, it felt important to do that because how else are you going to get the money.
Mathilda Mallinson: The burden is falling on disabled people to take on often far more powerful employers in instances where they face discrimination. Do we need interventionist structures to penalize ableism so victims don’t have to? Do we need interventionalist cultures to stop it before it begins? That brings us on to part two of our podcast. Thanks for sticking around.
Helena Wadia: Welcome back to the studio and to Media Storm, the news podcast that starts with the people who are normally asked last.
Mathilda Mallinson: This week we are talking about ableist discrimination and perceptions, or rather misperceptions, of disabilities in the media and society. With us are some very special guests.
Helena Wadia: Our first guest is co-host of The Triple Cripples podcast created to increase the visibility of disabled women, femmes and non-binary people of colour. She’s a writer, lecturer, consultant and travel blogger. It’s Jumoke Abdullahi. Hello.
Jumoke Abdullahi: Hi.
Mathilda Mallinson: Our second guest is a consultant and strategist who has wowed Instagram with her dazzling, bright purple infographics about building equity and inclusion for disabled and LGBTQI+ people. She was named Stonewall’s Young Campaigner of the Year, and one of London’s most influential people by the London Evening Standard. It’s Ellen Jones. Hey, Ellen.
Ellen Jones: Hello.
Helena Wadia: So, let’s start. Jumoke, how often do you see articles or debates about disability not featuring anyone who actually has a disability? And if and when you see those, what do you think the effect of that is?
Jumoke Abdullahi: Well, with the media that I consume, a lot of it being more online, so even when we look at traditional media and their offerings, through their websites, etc., you can usually tell when the person writing it doesn’t have necessarily like a lived experience of disability. Because first of all, the things that they might say, or the different aspects that they might focus on would not necessarily be something that a disabled person might focus on. Right. It’s a case of sometimes it can be jarring, sometimes it can be quite laughable. But the effect that this has is that the thoughts and the opinions of disabled people are once again not being considered because if we’re talking about a subject that has to do with disability, that has to do with the inaccessibility of different places, spaces, etc. Surely it should be those that have the lived experience of it that should be leading these conversations. But we are spoken for, we are spoken over, we are spoken about, even though you’re sat right there. And that could also be true, whether it’s in a newsroom or in a hospital room as well. So, for those that might have carers, it’s such a case that you the disabled person who is the subject, you’re the person that the doctor or whoever you’re there to see, you’re not actually the one being addressed. Like you’ll be right there in the rooms, like, okay, is she okay? It’s like she is right here. You can ask she, she will respond. And the issue with that happening in the newsroom and these huge platforms, which is something that we often discuss with the Triple Cripples is the fact that it has such a wide reach, right? Oftentimes, when disability is discussed, when we’re trying to fix things and make things better, we are thinking of the white straight male who just happens to use a wheelchair. And it’s always a wheelchair. We’re never thinking of those that are neurodiverse, we’re not thinking of those that might have auditory or like visual impairments, etc. So, we have to think about and consider those that are in the margins of the margins, be that through their gender, through their race, through their sexuality.
Mathilda Mallinson: But it’s not just that the media isn’t necessarily including the right voices. What I’ve learned from your Instagram feed, Ellen, is that the media is often failing to reach the right people. It’s often inaccessible in itself. So, is there an issue with the news media not being accessible to everybody? And what’s the impact of that information in equality?
Ellen Jones: I think, yes. It’s funny that even has to be asked because to me, it’s so obvious like speaking and working with so many people and also knowing so many disabled journalists in particular and disabled editors who have to essentially fight to be able to access the thing that they work in. What was a really good example of disability and increased accessibility not being prioritized was that for months Channel 4 had no captions at all. And it was supposedly because of a tech failure. I wonder if the sound stopped working, would it have gone on for so long? Obviously not! They would have fixed it almost immediately. But captions are seen as not important or, you know, important to a niche group. But actually, they’re important not just for deaf people, but also for people who don’t speak English as a first language or for a whole bunch of reasons. But it wasn’t a priority. And that’s, you know, again, producing news. I think, though, there’s not really great examples of it being done. It’s not being role modelled. Obviously, the government and the news are separate things, but I look at the COVID briefings and, you know, the huge COVID briefings that we were having. They just didn’t have a BSL interpreter for any of them. Apparently, they couldn’t fit one in the room despite the fact that countries around the world had sign interpreters at every COVID briefing.
Helena Wadia: You know, one of the root causes of the media being inaccessible and exclusionary is that the people making the editorial decisions are themselves quite a narrow demographic. There’s a distinct lack of diversity within newsrooms, particularly at high levels. I’ve spoken about this countless times on the issue of race and my experiences of being in such a minority of people of colour in newsrooms. And the creative diversity network has just published its fifth annual report on inclusivity in the UK TV industry. So, they audit companies like BBC, ITV, Channel 4, CBS, Sky and more. And it flagged disability as the main area of concern, literally concluding that there appears to be nowhere in the industry where disabled people thrive. And what we see and hear in the media is largely decided by a small group, of let’s face it, probably able-bodied editors and producers, who also project their own outside opinions of disability as well as perceptions they think will bring in the audience. And this leads to stereotyping. So, let’s talk about some of those stereotypes and the effect they have on real people.
Mathilda Mallinson: So, I would ask whether you find language used by the media, like ‘suffer’, ‘condition’, ‘plight’, this is just me scrolling through, like the articles that come up first, if you kind of search disability on the news tab of Google, whether that language which kind of feels quite patronizing, if that is rooted in a harmful reductive stereotype, in your opinion?
Jumoke Abdullahi: Yeah, absolutely. Another popular one, when talking about wheelchair users, is also wheelchair bound, right? Like a wheelchair is a mobility aid that actually, you know, helps people be more mobile, you know, take part in their community in their environment, and be able to go further and see more. And the issue is, I’ll give a quick example. So, I used to work in this office at the reception. And that was at a very, very, very large desk. So, I use a leg brace and two crutches. But while I was sat down, you could only see my top half so I was helping somebody and was like, “Oh, what do you need? You need to go here, Blah blah blah.” And in order to continue assisting them further, I had to get up. And when I did get up, and you know, they saw my mobility aids, my accoutrements as they were, then they were like, “oh”, and everything suddenly changed. It was like 10 seconds ago, when I was the person assisting them that had all the answers where they needed to be, like as was my job. All of a sudden it was: “my goodness, what happened to your leg? What’s wrong?” And it was, it was immediate. It was literally a light switch. Unfortunately, the light switch went from on to off, but it was just a case of this is something to be pitied. This is something to feel sorry for, this is a condition to lament. And often, myself included, disabled people, those that have visible disabilities, it’s a case of “oh, my goodness, I don’t know how you do it. I would have killed myself.” And you’re like… Oof.
Mathilda Mallinson: What? Someone’s actually said that?
Jumoke Abdullahi: Yeah, people say that. I promise you, right. Ellen?
Ellen Jones: Yeah. Like, even as someone who’s autistic, I see that happening a lot to my friends who have more obvious disabilities. For me, what I find really interesting is, if I will say that I’m autistic, I get the response: “No, you’re not. You’re not boy. But you’re nothing like my five-year-old child.” Or it’s, or “you’re not insert X like stereotype.” And I think that’s the issue I’ve got is that people are more willing to listen to one piece of media, even if it’s a terrible piece of media with no involvement, than they are to listen to my actual experiences. And if the representation of disabled people is only of them suffering, or is only of them being like a charity case, or only of them being, you know, not sexual. It’s when those are the only representations. And those representations are informing popular, widespread opinion.
Mathilda Mallinson: People who don’t fit into these very simplistic reductive stereotypes are then questioned, disbelieved about being disabled, suspected of lying. I mean, this is just coming from the investigation I did. And people I spoke to said that when they requested reasonable adjustments, that if they didn’t have a disability that was immediately visible, that they would often be, you know, made out to be attention seeking or like demanding special treatment in some way.
Ellen Jones: Oh, special treatment is something that comes up consistently, in my work. I’m very grateful to work for a company that is so inclusive and so accessible to me. But I work with organizations where, you know, people with a range of mobility disabilities will be considered demanding special treatment for having a ramp to get into their office, that special treatment, in the perception, not from the perception of the business, from the perception of their colleagues. And that’s what I find really interesting. is the situation I’m working in, which isn’t spoken about so much, is peers who think that a disabled person is getting special treatment. And that causes conflict, and then that makes the leadership not want to do things. And that’s something that I see over and over again, and it’s a pattern. And I think, actually, when I start talking to people about what does it mean, to be able to just do your job? You know, if there’s something that would make you, you might not have a disability, but if there’s something that would help you do your job, why don’t we make it so everyone can do their jobs more easily? And that might look different for different people. Because funnily enough, we’re not all the same.
Jumoke Abdullahi: The issue, though, is the culture here within the UK, like I suffer, so you must suffer also. It’s the problem of if I even for a second, I think that you might be getting preferential treatment, which it actually isn’t, it’s just equity, it’s the playing field being levelled, then I will complain to whoever will listen. And you will always be listened to because if you are a certain way, look a certain way, speak a certain way, your complaints will always be taken more seriously, right? Like, if we look at the protector characteristics, right, you know, be it age, gender, ability, sexuality, etc, etc, etc. If you give me disabled black woman, the exact same things as non-disabled white man, like he’s already way out in the lead, like way, way, way out in the lead, and you’re giving us the same thing, like, you’re actually making that gap even wider. You’re making it even more disadvantageous, like to me, there’ll be certain things that they wouldn’t even need to consider that they wouldn’t even need in the first place.
Ellen Jones: I think it’s a much more human approach as well. Because actually, knowledge is what people need, rather than just making an assumption about what they need.
Jumoke Abdullahi: Yeah, and it doesn’t just see people as just like a clump or like a monolith. It’s like, what do you the individual Jumoke need? What do you the individual Ellen need? And then catering to that, and it’s not impossible. It’s just, they don’t want to do it for some people. And unfortunately, I’m often part of some.
Helena Wadia: Time to look at some of the topics that have been making recent headlines, one of them, you may have heard of it. And if you haven’t, then I’m jealous. It’s COVID-19. All through the pandemic and all over the world, news outlets have religiously tracked and reported the devastating effects of this virus and the growing number of casualties. But they’ve also really emphasized what proportion of those seriously affected had, quote-unquote an underlying health condition. At our newsrooms, when we were working throughout the pandemic, we were originally instructed to highlight those underlying health conditions to prevent so-called panic. But what does this say about how we value different people’s lives as a society, that that was supposed to make it less scary?
Jumoke Abdullahi: It was very strange, you know, often there had been whispers for a little bit as like, there seems to be something, COVID-19. Who knows what this is, like, nobody has any idea what this is? And then it just booms to something more and more and bigger and bigger. And then the numbers and the stats and the figures started coming out. And it was the way that it had been talked about and discussed and written about was that those being affected were those with underlying health conditions. Don’t worry normal people, it’s just the ones with underlying health conditions that will be taken off. Don’t worry, you’ll be fine, because the reason that that was being highlighted was to reassure people, but it was to reassure people that they saw as people, right? Because, for disabled people that have, or those that have underlying health conditions, that’s not reassuring at all, that’s actually incredibly terrifying. It was a legal way, like a non-criminal way of just picking off disabled people. Of every ten COVID related deaths, six were disabled people. So, like 60% was disabled people. I don’t know the exact percentage, but it was even higher for those that had learning difficulties. People need to realize that with the way that the world in life generally is set up, it’s not that you’re not disabled, you’re pre-disabled, because life could change, in a second, at a flash. And then all of a sudden, your world is turned upside down. And the problem is, a lot of people are going to have a very, very, very painful wakeup call because you that thought you were okay, able to go up and down the stairs using TfL, go into this bar, into this club and galivanting and there wasn’t a light that was too bright or a sound that was too jarring. Now we do have a mass disabling event we’re going to have on our hands, so many more disabled people. But how do we now deal with that because the disability community is only going to get larger and for the disabled people that have already been here pre pandemic, pre COVID, things are already terrible. Listen to us. It’s a case that we’ve been yelling like the canaries in the coalmine: “No, this is going to be incredibly awful. This is going to be incredibly painful.” And nobody’s listening. And like the adage says those that do not hear, what must they do? They must feel and unfortunately, this one’s going to hurt.
Ellen Jones: I literally had plans in place six weeks before COVID hit the UK badly. And I was saying constantly I was telling people exactly what was going to happen. And they were treating me like I was crazy.
Jumoke Abdullahi: Yeah, absolutely. Disabled people were seen as doomsayers, right? Yeah,
Ellen Jones: Absolutely. And it was ridiculous. And my fear wasn’t contracting the virus and dying with the virus. My fear was that we were having young autistic people and young people with learning disabilities, having DNRs put on them without their consent or knowledge, because their lives were seen as completely disposable. And I was worried that if something happened, they put a DNR on me, and that’ll be it. And that’s because that happens, right?
Mathilda Mallinson: And DNR is do not resuscitate?
Ellen Jones: Do Not Resuscitate. So basically, it’s something that a person might choose to have, and that they can choose. It’s often a long-drawn-out process. I’ve had the responsibility of kind of being responsible for that decision for other family members. And it’s not something to take lightly. And so, for people to have that put on them without their consent knowledge. I think also particularly given that it was to do with a neuro divergent condition, it wasn’t something was going to make them more susceptible to COVID.
Mathilda Mallinson: Do you think that COVID-19 exposed and made explicit like Darwinistic opinions that society has about survival of the fittest and a really like, on hidden it brought them to the surface?
Ellen Jones: For me it’s blatantly obvious that this isn’t like the eugenics-esque policies that have been implemented over COVID might horrify non disabled people listening to this, but why would they win? The benefits system has been killing off disabled people in the tens of thousands for years, like this isn’t…
Jumoke Abdullahi: This isn’t a new to us.
Ellen Jones: Yeah, this is an old hat. In some ways, it’s really difficult. So, I’m like: where the fuck were you? Like, where were you? When disabled people were dying in the tens of thousands. Where were you when it’s systemic abuse in every single level? Why would you ever think for me, particularly as a young person? I look at adults that I know who are like, genuinely, genuinely conscientious, caring people and I’m like, what! Why aren’t you doing this? Because for me, I try and show up for communities that I’m not part of, because I feel like it’s the right thing to do as a human being. It’s not like disabled people haven’t been in the press as being scroungers and all the rest of it. It’s not like that you don’t know they exist. It’s not like we’ve not had Childre in Need putting pictures of disabled children being failed by the government and failed by the NHS on our televisions every year as a big celebration. You just don’t want to accept it. You don’t want to listen, because that’d be really scary if you suddenly realize that the government doesn’t care about your lives and the society doesn’t care about your lives and you are completely disposable. And that could happen to you tomorrow. And that’s what it looks like that’s the that’s the like cheery version of that story. The other the other idea is that it’s intentional, right?
Jumoke Abdullahi: Oh, yes. Oh, yes. Oh, yeah. No, but it’s true. You’re not falling through the gaps. You’re being pushed. I promise you you’re being pushed.
Helena Wadia: That’s a wrap, not just on this episode, but of season one of Media Storm. Although we will have a quick bonus episode to you next week, where some of this week’s guests advise you on how to be a better ally for your disabled colleagues, employees and friends.
Mathilda Mallinson: But we have some good news before we descend into our hibernation holes. Media Storm will be back. We’ll be putting together a brand new season for summer time to equip you with lots of new perspectives for your barbecues or festivals or whatever it is we get up to when the weather isn’t completely shit.
Helena Wadia: Before we roll the credits, a huge thank you to our guests this week who have brought this season to such a wonderful close. I want to ask you both where can people follow you? And what do you have to plug? Ellen, take it away!
Ellen Jones: So, people can follow me at @Ellen__Jones. If it looks like there’s a person who’s really purple that’s me, I create lots of content around disability specifically neurodivergent queerness. I also obviously console and also do lots of like speaking and writing and various things so if you’d like to work with me, you can go to www.ellen-jones.co.uk, you can find out all about how to get involved with that sort of thing. And yeah, I I love doing what I do like I know that we’ve talked about some really heavy things today but I do genuinely want just the world to be a bit better for disabled people because if we have to survive this hellscape then you know just do it and you know if surviving this hellscape also means like you know getting sponsored by cute companies that also you know helps
Mathilda Mallinson: Jumoke, what about you? What have you got to plug and where can people follow you and key listen to you?
Jumoke Abdullahi: Yeah so, I’m Jumoke Abdullahi. One half of The Triple Cripples and you can find myself and my darling sweetheart Kim Oliver on Twitter at @TripleCripples, as well as Instagram at @TripleCripples. And you can find us on YouTube and on Facebook as The Triple Cripples. You can also pay us via PayPal to pay pal.me/triplecripples. We are also available for speaking and writing gigs and do quite well at consulting and talking about the intersections of race, gender and ability. And you can check out our website on www.thetriplecripples.uk
Helena Wadia: Thank you for listening. We’ll be taking a holiday after next week’s bonus, but in the meantime, we’ll be releasing resources for each of the topics we’ve covered this season to convert words into actions. So, make sure you follow us on social media @mathildamall and @helenawadia and most importantly, follow the show @mediastormpod.
Mathilda Mallinson: Follow Media Storm wherever you get your podcasts so that you can get access to new episodes as soon as they drop. If you like what you hear, share this episode with someone and leave us a five-star rating and review. It really helps more people discover the podcast and our aim is to have as many people as possible hear these voices.
Helena Wadia: Also get in touch to let us know what you’d like us to cover or who you’d like us to speak to.
Mathilda Mallinson: Media Storm, a new podcast from the House of the Guilty Feminist is part of the Acast Creator Network. It is produced by Tom Salinsky and Deborah Frances-White. The music is by Samfire.