Media Storm - S1E10 Ableism enabled: The loopholes in Equality Law - with Jumoke Abdullahi and Ellen Jones

Starting point is 00:00:00 Helena, would you apply to a job that you were literally incapable of doing? Only if I was a straight white man. No, no, no. I'm kidding. No, Matilda, I wouldn't because that makes no sense. 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 are incapable of doing? I think we can allow that. Cool. I just want us all to remember that as we go into this week's topic.

Starting point is 00:00:36 So what is that topic, Matilda? 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.

Starting point is 00:01:05 There's financial support available from the government to do this and there is legal liability if businesses refuse. I noticed at the beginning of that you said in theory. The data says otherwise. Disabled people are twice as likely to be unemployed as 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,

Starting point is 00:01:33 meaning it has already excluded people who are unable to work at all due to ill health or other reasons. Right. So if disabled workers are twice as likely to be unemployed as non-disabled workers, well then we evidently do not have an accessible economy. So why not? 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

Starting point is 00:02:06 to accommodate disabilities, isn't it curious that companies are rejecting disabled people at twice the rate of non-disabled people? I mean, curious is one word. I believe another word for it is abelist, which is the word referring to discrimination against people with disabilities. But see, The thing is, Helena, if you were to look at this country's legal records, you'd think

Starting point is 00:02:31 workplace ableism didn't really exist. Why is that? How many lawsuits about workplace ableism are we seeing? 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. That's a very small number. What's happening to the rest of them?

Starting point is 00:02:55 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? 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. And I'll see you back in the studio with some very special guests to discuss everything around this. Media Storm. Dozens of parents have complained to the BBC that a disabled television presenter

Starting point is 00:03:30 is scaring their children. No underlying health conditions. Underlying health conditions. Other health conditions. The elderly and people with underlying health conditions. People with congenital disability are facing extinction. Welcome to MediaStorm, the news podcast that starts with the people who are normally asked last. I'm Matilda Mallinson. And I'm Helena Woodia. This week's investigation Abelism Enabled The Loophole's Inequality Law I'm going to start with a case that after speaking to dozens of people on and off the record

Starting point is 00:04:05 about their experiences of ableism felt emblematic of what many people go through Sophie, who's using a pseudonym and voice distortive 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. had my first month probation, I got some really good feedback.

Starting point is 00:04:29 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. When I told them about my disability, it was so awkward. The vibe completely changed. The senior manager was that 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 were obviously, see directories that I could fully are well access, as most people have seen from working from home. You can access everything that you need from home. So it was a lie. After this, she feels

Starting point is 00:05:04 attitudes towards her changed. It was like looking for any mistake that I would make. Any minor mistake was really amplified. Did you feel that they were using whatever they could to build a legitimate case to dismiss you? Yeah, they were doing anything they could. Going through all of this was awful. Like 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. I remember phoning my friend Amy in tears and being like, I just can't do this anymore. I was like so tired, just so, so tired from the whole thing. I was like, I just want to leave. But, you know, she was like, you can't know. I'm not letting you do that.

Starting point is 00:05:49 I know 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. Meet Amy Sophie's friend who pushed her to threaten legal action against the company. 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 like the basic obligations under the Equality's Act. You literally like 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 like how fatigued I was, how stressed I was and how upset I was by the whole

Starting point is 00:06:22 thing. I was like, I can't do this. I had so much anxiety. I doubt to myself. It's weird for this interview when you look back 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, like from the first conversation going, we don't have the resources, but no evidence of checking for resources. The bullying behaviour saying that it's more inconvenient, over amplification of minor mistakes. At the time, how long did it even take for you to say what was happening was discrimination? I felt like a fraud, to be honest, thinking I had a case in that way.

Starting point is 00:07:00 It still makes me really, really mad because this is happening everywhere, do you know what I mean? Like, it's horribly common and you doubt yourself a lot and sometimes you can actually know more than them. It's weird. I think that for someone else, I'm more similar to Amy. I would be like so bullshit and it was only when it happened to me, I was like, I felt powerless. Speaking to people, people are very, very hesitant. speak up for themselves. A lot of disabled people feel like frauds and don't feel validated

Starting point is 00:07:27 because I think that they worry that someone else has got it worse than them and they 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 had gone through that, have a hand of the validation that I would have been in pieces, my confidence. For so many disabled people, they won't get that moment and they shouldn't have to have that moment to know that what they went through was valid. You've just started a new job today. Yeah. Yeah.

Starting point is 00:07:54 Well, congratulations. Thank you. But, but, yeah, when you start a new job, how does that experience affect you? Does it affect your confidence? I didn't have any confidence. I didn't disclose I had a 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 because I thought I want these adjustments.

Starting point is 00:08:12 So then even when I spoke to my manager about it, I was shaking and I was completely in tears. I really struggled. And like, 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 my confidence about who I was as person. People liked me enough that they did. Why would people do that? Will you tell us what came of the case? What was the outcome of threatening legal action against the company?

Starting point is 00:08:44 I never had to reach legal action because we were able to reach a settlement. I left my contract early, but get paid for the rest of my contract, then a little bit extra. So it wasn't like this huge settlement case, but it was enough for me to be able to give me the support to find the next job. And what was the condition applied to you? I'm not allowed to talk about it. The vast majority of cases end 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 work. one of the lucky few.

Starting point is 00:09:19 To play in front of 3,500 people when you normally play in front of two men and a guide dog is incredible. This is Karen Seal, Paralympian and former captain of the England Blind Football Team. The Paralympics in 2012 was a great watershed moment

Starting point is 00:09:35 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, 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.

Starting point is 00:09:58 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 to 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. What would you say to the people who made those comments sitting here today? 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 kind of put yourself out there as an advocate of disability sport if those are your attitudes?

Starting point is 00:10:38 Without representation, without blind coaches, without disabled coaches, you're probably always always. always going to come across views like that. 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 enter the workplace.

Starting point is 00:11:14 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 FT and many other leading outlets. She has reported widely on the difficulties of applying for work as someone with cystic fibrosis. 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, 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 like take a step

Starting point is 00:12:02 back and realise is 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, then 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, like, they will and that's inevitable. 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,

Starting point is 00:12:46 that it's too costly, too impractical, they don't have to do anything at all. 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. This is Emma Vogelman, policy advisor at the Charity Scope, trustee of the Disability Law Service, expert, in disability law. I personally don't know any disabled people

Starting point is 00:13:17 who have gone all the way to a tribunal. So why is the law that was designed to protect disabled workers from discrimination, so inaccessible to them in times of need? There's that annoying term, reasonable in there. So it's 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

Starting point is 00:13:57 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. Equality law is frequently failing to serve its purpose.

Starting point is 00:14:27 And subtler forms of discrimination such as implicit bias and microaggressions full beyond its scope entirely. Which is why Roxanne Steele, an accessibility and inclusion specialist who has cerebral palsy herself, insists we cannot rely on it to tackle ableism at work. I think the thing that you've got to remember is actually the Disability Discrimination Act didn't come in till 1995.

Starting point is 00:14:53 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 serpent. of life before they understood that people like me deserved rights. So why would I expect managers that I work with to potentially understand this? While I do think there is space for legal weakles, 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.

Starting point is 00:15:48 Women are often seen incompetent until proven otherwise. And men in general, hashtag not all men, were seen 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 what that does, it stops people in my workplace from actually benefiting from my own assets and my own lived experience. It's about you stepping back and self-reflecting. and say, is this the attitude I want to have? The consequences of ableism are real and ruthless.

Starting point is 00:16:43 Being paid to be quiet by companies who know that they've messed up and discriminated against you, it just feels wrong. Our next speaker is Ilana Richards, marketing director and new mum. She has had her fair share of workplace discrimination. It makes you scared to approach employment because you just feel like you're going to be met with this.

Starting point is 00:17:05 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 of the way to survive in this society. So I ended up doing Airbnb from my house, even though I wasn't supposed to. It was so against my contract. I was only renting. I had to pretend I owned the place just to make a basic living wage. I was in survival mode times a thousand. I wasn't eating, I didn't have enough money for food. Like, the different situations I've been in looking back that all stem from ableism and the barriers to entry

Starting point is 00:17:42 for working as a disabled and a chronically ill person, it blows my mind. And that's what these employers do understand. There are real consequences for not making space for accessibility and not prioritising it. 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, and 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 criticised by people affected.

Starting point is 00:18:26 Among those people is Maria Kalinovska, a photographer and creative director who was chronically ill with endometriosis. So I applied for PIP a few 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. Okay, so yes or no question, do you feel like our working culture and our economy is, from your experience, accessible for people with chronic illness and or disability? Absolutely not. Another yes or no question, again, from your personal experience, do you feel like our welfare system is adequately set up to compensate for that? No, I don't think so.

Starting point is 00:19:22 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 does 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 like months but in that moment, it felt important to do that because how else are you going to get the money? 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 penalise ableism so victims don't have to?

Starting point is 00:20:14 Do we need interventionist cultures to stop it before it begins? That brings us on to part two of our popular. Thanks for sticking around. Welcome back to the studio and to Media Storm, the news podcast that starts with the people who are normally asked last. This week we are talking about ablest discrimination and perceptions or rather misperceptions of disabilities in the media and society.

Starting point is 00:20:48 With us are some very special guests. Our first guest is co-host of people. 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 Jamoke Abdullahi. Hello. Hi.

Starting point is 00:21:07 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 plus people. She was named Stonewall's young campaigner of. the year and one of London's most influential people by London Evening Standard. It's Ellen Jones. Hey Ellen. Hello. Hi, hi, hi. So let's start. Jemoke, 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? 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

Starting point is 00:21:55 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

Starting point is 00:22:27 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

Starting point is 00:22:52 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 is there to see, you're not actually the one being addressed. Like, you'll be right there in the room. It's like, okay, is she okay? it's like, she is right here.

Starting point is 00:23:14 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-cribbles 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.

Starting point is 00:23:46 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. 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

Starting point is 00:24:23 not being accessible to everybody? And what's the impact of that information inequality? I think, yes. It's funny that 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. A really good example of disability and accessibility not being prioritised is 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 the scene is not important

Starting point is 00:25:08 or you know important only 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 well I think and it's not being role-modelled by obviously the government and the news are separate things would hope. But I look at like the, I look at the COVID briefings and the, you know, the huge COVID briefings that we were having. They just didn't have a B.S.L interpreter for any of them. And apparently they could fit one in the room, despite the fact that countries around the world

Starting point is 00:25:47 had sign interpreters at every COVID briefing. 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

Starting point is 00:26:36 industry where disabled people thrive. And what we see and here 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. So I would ask whether you find language used by the media, like suffer, condition, plight.

Starting point is 00:27:12 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. 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,

Starting point is 00:27:47 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 there was a very, very, very large desk. So I used a leg brace and two crutches. But while I was sat down, you could only see my top half. So I was helping somebody as like, oh, what do you need?

Starting point is 00:28:12 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's like my goodness what happened to what happened to your leg what's wrong and it was it was immediate it was literally it was a light switch unfortunately the light switch went from on to off but um it was just a case of this is something to be pitied this is something to be pitied this is something

Starting point is 00:28:54 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. What? Yeah. Someone's actually said that. People say that, I promise you. Right, Ellen? Oh, so yeah. Like, even as someone, like, as someone who's autistic, I, I see that happening a lot to my friends who have more obvious disabilities than me. What I find really interesting is, if I'll say that I'm autistic, I get the response, no, you're not, you're not a boy, but you're nothing like my five-year-old child, or it's, oh, you're not, insert X, like, stereotype. And I think that's the issue I've got is that, like,

Starting point is 00:29:44 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, like, my actual experiences. and if the representation of disabled people is only of them suffering or is only if them are being like a charity case or only of them being like, you know, not sexual or only, but it's when those are the only representations and those representations are informing popular widespread opinion. People who don't fit into these very simplistic reductive stereotypes

Starting point is 00:30:12 that then questioned, disbelieved about being disabled, suspected of lying. I mean, this is just coming from the investigation. 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. Oh, special treatment is, it's 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,

Starting point is 00:30:51 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 what I'm often, the situation I'm often working in, which isn't spoken about so much, is peers who think that a disabled person's 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.

Starting point is 00:31:19 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 if funnily enough, we're not all the same. The issue, though, is the culture here within the UK, like, I suffer so you must suffer also. And it's the problem of if I even for a second think that you might be getting preferential treatment, which it actually isn't. It's just equity. It's the playing field being leveled. Then I will complain to whoever will listen.

Starting point is 00:32:05 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 protective characteristics, right, you know, be it age, gender, ability, sexuality, et cetera, et cetera, et cetera, 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 will be. be certain things that they wouldn't even need to consider, that they wouldn't even need in the first place. I think that's also, it's a much more human approach as well, because it actually acknowledges what people need, rather than just making an assumption about what they need. Yeah, and it doesn't see people as just like a clump or like a monolith. It's like, what do you

Starting point is 00:33:02 the individual Jumacher 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. 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,

Starting point is 00:33:30 news outlets have religiously tracked and reported the devastating effects of this virus and the growing number of casualties. But they've also really emphasised 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

Starting point is 00:33:57 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? It was very strange, you know, Like, after there'd been whispers for a little bit. It's like there seems to be something C-19, COVID-19, who knows what this is. Like, no, he has any idea what this is. And then it just boomed to something more and more and bigger and bigger.

Starting point is 00:34:26 And then the numbers and the stats and the figure started coming out. And it was the way that it had been talked about and discussed and written about was those being affected of 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?

Starting point is 00:35:00 Because like 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 like a legal way, like a new, non-criminal way of just kind of like picking off disabled people. Of every 10 COVID-related deaths, six was disabled people. So like 60% was disabled people. And 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 and life generally set up, it's not that you're not disabled. You're

Starting point is 00:35:38 pre-disabled because life could change at a second, at a flash, and then all. a sudden your world has turned upside down. And the problem is a lot of people are going to have a very, very, very painful wake-up call because you that you thought you was okay, able to go up and down the stairs, using TFL, going to this bar, into this club, and gallivanting, 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 you 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.

Starting point is 00:36:26 Listen to us. It's a case that we've been yelling. We're the canaries and the coal man. It's like, 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. 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. Yeah, absolutely.

Starting point is 00:36:56 Disabled people were seen as doomsayers, right? Yeah, 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 was seen as completely disposable and I was worried that if something happened

Starting point is 00:37:18 they'd put a DNR on me and that would be it and that's because that happens right? And DNR do not resuscitate. Do not resuscitate. So basically it's something that a person might choose to have and that they can choose to, you know, it's often a long, drawn out process. I've had like the responsibility of kind of being responsible

Starting point is 00:37:35 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 the neurodivergent condition, it wasn't something that was going to make them more susceptible to COVID. Do you think that COVID-19 exposed and made explicit, like, Darwinistic opinions that society has

Starting point is 00:37:58 about survival of the fittest in a really, like, unhidden, it brought them to the surface? 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 when the benefit system has been killing off disabled people in the tens of thousands for years like this isn't this isn't a new this isn't new to us yeah this is this is old hat like in some ways it's really difficult because I'm like

Starting point is 00:38:34 where the fuck were you like where were you when disabled people were dying in the tens of thousands, where were you when systemic abuse in every single level? Like, where were you? I think for me, particularly as a young person, I look at adults that I know who are like genuinely conscientious, caring people. And I'm like, why aren't you doing this? Because for me, I try and shut up communities that I'm not part of because I feel like it's a right thing to do as a human being.

Starting point is 00:39:04 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 children in need putting pictures of, you know, disabled children being failed by the government and failed by the NHS on our televisions every year as a big celebration. Like, you know, you just don't want to accept it. You don't want to listen because that would be really scary if you suddenly realise 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 like, Like, it's like, that's the, like, cheery version of that story.

Starting point is 00:39:39 The other, the other idea is that it's intentional, right? Oh, yes, oh, yes, oh, yeah. No, but it's true. It's not, you're not falling through the gaps. You're being pushed. I promise you, you're being pushed. That's a wrap. Not just on this episode, but on season one of Media Storm.

Starting point is 00:40:00 Although we will have a quick bonus episode for 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. 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 summertime 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.

Starting point is 00:40:28 Before we roll the credits, a huge thank you to our guest this week who have bought 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. So people can follow me at Ellen underscore Jones. If it looks like there's a person who's really purple, that's me. I create lots of content around disabilities, specifically neurodivergence, queerness. I also obviously consult and also do lots of speaking and writing and various things. So if you'd like to work with me, you can go to Ellen-Jones.com.com. You can find out all about how to get involved with that sort of thing.

Starting point is 00:41:08 And, yeah, 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. Jamalke, what about you? What have you got to plug?

Starting point is 00:41:32 And where can people follow you and Kyi listen to you? Yeah, so I'm Jemakir Abdelai, one half of the triple cripples. And you can find myself and my darling sweetheart Kim Oliver on Twitter as triple cripples as well as Instagram as triple cripples. And you can find us on YouTube and on Facebook as the triple cripples. You can also pay us. You can pay us via PayPal at PayPal.m.m.E. slash triple cripples. We're also available for speaking and writing gigs and do quite well at consulting and talking about the intersections of race, gender and ability.

Starting point is 00:42:19 And you can check out our website on www.the triplecriples.uk. Thank you for listening. 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 at Matilda Mal, at Helena Warrior, and most importantly, follow the show at MediaStorm pod. Follow MediaStorm wherever you get your podcast 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 please

Starting point is 00:42:57 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. Also get in touch and let us know what you'd like us to cover or who you'd like us to speak to. Media Storm, a new podcast from the House of the Guilty Feminist is part of the ACAS creator network. It is produced by Tom Silinski and Deborah Francis White.

Starting point is 00:43:19 The music is by Samfire.

Media Storm - S1E10 Ableism enabled: The loopholes in Equality Law - with Jumoke Abdullahi and Ellen Jones

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