What's up with the attacks on invisible disabilities?

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Red: Tena koutou, welcome to Crip Café. This is an emergency um emergency pod, an emergency cup of tea with um your disabled besties, Red and Soph. Kia ora Soph.

Soph: Kia ora.

Red: We're here today because it's been a big couple of weeks in the um invisible disability. Are you really disabled? How come disability became cool all of a sudden? Where are all the 'sickfluencers'? She's been a big couple of weeks in the discourse and we thought we'd jump on here to talk about it because there's just, there's too much to cover. Definitely.

Soph: And you can be you can be an honorary member of the community today because you could on the screen be invisibly disabled. Red: Well, no one would know as long as I keep my head rest suitably hidden from the camera. Um, but I owe a lot personally to sickfluencers.

Red: If we didn't have sickfluencer, I wouldn't have cool wheelchair accessories clearly. uh is is the main conclusion I've been taking out of these um pretty toxic far-right uh opinion pieces that have been flooding the internet over the last couple of weeks. So, I wonder So, to set the scene, would you mind telling us a little bit about the the particular um pieces and question we're going to be discussing and unpacking today? How those stories are rippling through the waves of the internet at the moment?

Soph: For sure. Um well I'm uh one of the invisibly disabled people in question. I have at least three of the specific conditions that were called out in the Telegraph article.

Red: Oh.

Soph: Um, yeah. So, there have been two articles in recent times, one published by The Times and one published by The Telegraph. Both British newspapers with a right-wing leaning. Um, the first one was titled something like, "Why are so many young women using walking sticks?" And the second one was,  "When did disability become cool?" Something to that effect. Um, but both of them set the same premise, which was they were highlighting the fact that there seem to be more young women than ever who are invisibly disabled and are using mobility or accessibility tools like canes. Um, and I think that it feels like to me these conversations are like a shoe we've been waiting to drop because this is already a fear that a lot of invisibly disabled people have is that people are secretly thinking you're faking or you're lying or something to that effect. And so, I mean obviously it feels horrible to see um these kind of narratives being platformed on huge mainstream publications um but weirdly I felt like well it was coming for us at some point. So it's almost like good to be having the conversation out loud in a way. Um but yeah that's the those are the sort of two pieces that are floating around at the moment. Um, both of the writers have uh connections to anti-trans politics and neither of them have any kind of medical background. Um, so I think that's an interesting thing to keep in mind when thinking about the framing of both of these stories.

Red: Absolutely. I'm just going to read an an excerpt from the The Telegraph story about um which actually has a very appealing headline which is like "Is disability cool now?" It's like it always has been cool. What are you talking about? It's super cool but then it sort of descends into quite a tirade. Um but it says "the country is sicker than it's ever been before and it's not afraid of shouting about it. Disability is changing. To many, it is no longer an adversity to overcome, but a social identity akin to one's sexuality, gender, or race. An immutable reality to be celebrated by the subject and accommodated by the rest of us."

I mean, it's just dripping with condescension and it's dripping with um kind of cynicism, right? It's no longer an adversity to overcome, but a social identity. I mean the the next 2,000 words are almost not worth reading once you get to that paragraph.

What what why do you think these authors wrote these opinion pieces Soph? What is the kind of fear or set of beliefs that are sitting behind them that that are like you say starting to bubble to the surface?

Soph: Well, first of all, it very much gives the energy of like, I preferred when disabled people were humble and also like stayed in their houses and I didn't have to see them. But um yeah, I think it's interesting that she talks about the idea that it's a social identity that people are proud of because if anything that's something that like here at The D*List we're trying to make sure that more people can be proud and like can connect with being disabled as an identity and a community to be a part of. And actually a lot of people have heaps of shame about that and have a whole journey they have to go through to get to the point of wanting to do that. So the people that she's maybe seeing being out and proud and visible and happy to be disabled are people who've probably spent many years trying to get to that point, um and have put in a lot of hard like emotional work to do that.

In terms of why I think these articles were published, I think that for many reasons, these authors and these publications don't want to believe that it's possible for so many of us to be disabled. I think that when there are more disabled people in the world and more of us like showing up proudly and visibly, that poses a threat to the ableist society that we live in. That has created certain stories about what disabled people should be and should look like. And I also think there's a there's a personal element where people who are not disabled um, encountering disabled people have like a deep fear around thinking about disability and how it might personally come into their life whether they might become disabled or sick themselves. Um, and so I think that it's something, it's an idea that people like to put in a box that disability is something that happens to other people, not to young women, not to young people, um, and not to them.

So I think there's the like larger political context, which is that shifting ideas about who disabled people are is kind of a threat to the social norm. Um, and then the more personal context, which is like it's a threat to people who are scared to think about disability and what it would be like to be a disabled person.

Red: It really reminds me of the the analogy that occurs to me is like the deserving poor, quote unquote you know like especially under near these neoliberal times people who um are well off and have enough resources like to put sort of um people in poverty into different camps based on how, how deserving they believe each particular person or whānau are of support from the government. And I feel like this is the same, right? It's like there's another paragraph later in the article where it says talking about the the the fact that one in four British people are now disabled and it says the growth in those identifying as disabled does not reflect a sudden shocking increase in the number of paraplegics. So again, like making that really direct comparison suggests that paraplegics, we're okay with because we can see the tragedy they have befallen. It's horrific. How could we live with us with ourselves if we didn't give those people care and support? Oh, but a young woman who's been battling a chronic and debilitating and painful and like life-threatening illness, like for some reason that person is less deserving of our sympathy and support What's that all about?

Soph: I really feel like a lot of it comes back to the fact that um people, marginalized people are expected to be humble, not to ask for too much, not to be too loud or visible. And particularly disabled people, I feel like have have often been seen as like a more respectable minority because of not being too loud or too visible or out and proud. Um, and because historically people have looked at the disabled community with like pity or looked down and been like, Oh, well that's sad for them. And then I put that community out of my mind. Like that's been the kind of attitude. Um, I think that the young women that I talked about a lot in The Telegraph article particularly, they're talking about influencers. Um, so women who are often like fashionable, taking posed photos. They've probably got customised mobility aids, they're probably wearing colorful, sparkly, beautiful things. And um, that goes against all of the stereotypes of what a disabled person is supposed to do and how they're supposed to feel about being disabled. I also think there's a young element of, I think there's an element of young women being um like taste makers. Like historically, pop culture kind of follows the path of where young women go. And so I think to see young women embracing being disabled um and making disability cool suggests more of a possibility of actually shifting those attitudes and that is kind of threatening.

Red: It's like we've historically we've put disabled people in their place. They know where they sit. They are objects of charity and objects of welfare. And if you just uh are grateful for the crumbs that we will throw you and just like you say, sit there obediently. Um then we can go we can all agree to go about our lives. But it's almost like we're rising above our station and you know there is a new um there is greater visibility of existing conditions. There is greater awareness of conditions and for whatever reason that yeah is making um certainly this these writers feel feel threatened.

Soph: I also think there's a interesting quote from The Telegraph article which says um that "this is entrenching a culture of economic inactivity." Um the the implication,

Red: Right.

Soph: Yeah. The implication being that fewer people are working or more people are claiming benefits. um which is like there's been a lot of scaremongering since 2020 about people working less or working in different ways and like the traditional 9 to 5 shifting in different ways and so there is also a fear there I suppose about young people who are supposed to be like the next generation of the workforce um not wanting to go out there and grind 9 to 5 or not being able to as in the case of this story um but is presented in this as if it is like a choice obviously because that's the whole like narrative that they're trying to push about chronic illness here.

Red: One of the conversations we have a lot at The D*List is the different experiences that those of us who have got more visible impairments do versus those of us who have more invisible impairments and you know they tend to swing in roundabouts to as to what extent that is either a blessing or a curse. You know, um, one of the conversations we've been having recently is about how when you have an invisible disability, you sometimes are called upon to perform your disability to a to a visible enough extent that people will believe you, take you seriously, understand you, uh, be able to support your access needs, etc. And there's this line in The Telegraph article that says, "But were they not decked out in the accessories of their disease, it would be impossible to perceive the conditions they consider to be so central to their interaction with the world."

Now the way this is positioned is as if to say like they're just, you know, the the sort of vanity of these of the 'accessorsation' of disability or chronic health conditions. But it's like, man, this is actually this is a coping strategy to help people understand like the access needs people have and the what it what it means to live with this condition in the world. Like this is in many ways people with invisible disabilities have been forced into this because they're not taken at face value. They're not believed in the first place.

Soph: Yeah. I mean, I think it's it's interesting that both articles, but particularly The Telegraph one, sort of try to act as if there is like a type of disabled person who is a real disabled person and then people who are not really disabled.

I don't actually think by the standards they're setting that there is any way of winning. I think if you're an invisibly disabled person and you do your best to mask or hide all the elements of your disability, then you tend to be disbelieved because people think um if you're capable of hiding it, it can't be that bad or it can't be that much of a challenge for you. And then on the other side, if you um are more visible or you "wear accessories of your disease" and then um this is the kind of feedback that you might get um is that you're faking it, or you're being dramatic or whatever. Um and and there's also risks obviously to um identifying yourself as disabled. Um like wearing the sunflower lanyard, which is something that I don't personally do. It means that you're signaling to the people around you that you are disabled and that potentially you have vulnerabilities that could be exploited and and you don't know what other people are going to do with that information. So you are trying to figure out how hostile is your environment, is it safe to share you that you are disabled or not.

It's very similar in some ways to being a queer person and figuring out how much to expose or not expose your queer identity because you can find a great deal of community and beautiful things through being read as queer in public places. Um, and you can also face a great deal of violence and hatred. So there is um as much as these articles kind of say that disability shouldn't be a social identity, there are also those elements that play into deciding how much to hide or expose your disabilities. Red: Is the sunflower lanyard an accessory of your disease? Yeah, the sunflower lanyard. Um, my compression socks, which I actually specifically bought in white so that hopefully people wouldn't notice that they were different to normal socks. Um, canes, which they think, these authors seem to think are an accessory rather than a genuinely useful mobility tool. Have you ever felt like your wheelchair is an accessory of your disease?

Red: Isn't it interesting though? Like, isn't it like, isn't it an accessory of my disease? And yet somehow it's a it's a legitimate one because, because I guess people see me as a wheelchair user and they go, ' well you're I in my in my way of understanding the world your life looks in my 3 seconds of judgment and or you know like observation looks sufficiently difficult enough that I'm willing to kind of like give you a pass mark.' Like it's it's we're getting quite like deep into some weird ways of making sense of the world and people which are just profoundly and unavoidably impacted by capitalism, right? Like your ability to produce to be in the world in ways that like adhere to norms. Yeah. It's there's a there's a lot to unpack here. You you talked before about taste makers. But I also I can't avoid I can't read these pieces and not kind of get distracted by their preoccupation with young women. What what's what's going on here? Because I mean, as a man I feel like as I've grown in the world and I've come to understand more about like the degree to which to which society but particularly men understand and talk about the experience of being like in a body that is not a man's body in the world. There is so much we don't know. Is this just like that at scale like where we're understanding that women's bodies are are different or is there something more insidious going on?

Like, what's, what's going on here?

Soph: Yeah, I think it's medical misogyny. I think for me, although I'm a non-binary person, I'm inevitably still impacted by medical misogyny in lots of different ways. And it feels like these kind of conversations which one of the conditions that was mentioned in The Telegraph was PMDD, which is a mental health condition I suppose related to a menstrual cycle. So, it feel it feels like a modern day hysteria sort of like describing women as being hysterical, rather than actually investigating you know the reasons behind what might be going on for them physically and mentally. Just in general, because of sexism and misogyny in the world that also exists in medical systems and affects how women are treated by doctors.

I take my husband to all of my medical appointments, as much as I possibly can because I am treated differently when he is there. Regardless of whether the doctor is a woman or not, I'm treated more respectfully and it's really obvious when he speaks to the doctor. Even though it's about me, it's heard more clearly. So, I think that you know there are a few references in The Telegraph article too, um women not being believed by doctors and seeking out community or validation online and that's presented as like because it's because they're seeking a diagnosis that's not real when the reality is just that we live in a country and the UK is also a country with very underfunded public health care systems. And so doctors are not paying as much attention as they should and women usually pay the price for that.

Red: As someone who um has grown up as a person with Cerebral Palsy, as a person as a wheelchair user, my childhood was surrounded by other wheelchair users. As I've become older and I've had more disabled friends and different types of impairments, uh, friends with different types of impairments, I've really like seen close up and firsthand the impact of chronic illness on people. And like it is having seen it and understood it and kind of grappled with it in both workplace and personal context like, it's pretty profound and it's one of those experiences that like once you know someone with chronic illness and the degree to which it impacts their daily life you can't unknow that and it's deeply um confronting and and you know, has been really profound in its impact on me and I wonder to what extent whether this person just needs to get some disabled friends.

There's a paragraph in here I'll just I'll read it out. It says um "Are the young women sporting crutches and ever-expanding lists of chronic ailments just malingering?" I don't know what the word malingering means. I think it means like like trying to get out of something. It says it goes on, it says "as children most of us pretended at some point to be unwell to get out of a boring family engagement or a miserable day at school. if we put on a decent enough performance, a husky voice, watering eyes, slow movements, we got what we wanted." And I was just like, wow, this person is off, like they are just so far out the gate, it's not even funny. And I just think, do they just need to get some disabled friends to understand that um what the reality is like for people?

Soph: Yeah. I mean, I think that even within disability community, a lot of us uh don't know things about people with impairments different to ours. And then outside of disability community, it's even worse. But both of the articles betray like a significant lack of understanding of disabled community and of the conditions that they're talking about. I think yeah there was sort of an emphasis on the idea that, if you if you're suffering you get some kind of status out of that that there was a quote along those lines in The Telegraph article and also, that we don't want to get better because we're coddled or we're treated well by people because of being disabled. But I have not experienced that personally. Um, I don't know about if you're visibly disabled, maybe more so. People are more inclined to coddle you possibly. I'm being coddled all the I'm being coddled all the time. My life is just one big coddle. But I but I don't um Yeah, that's not the way that I'm received. Uh, if anything, it's the opposite because people don't believe you. Like people like the writers writing these articles um don't believe that you're ill. So rather than um getting any kind of status or being coddled um it's more so like a pull yourself up by the bootstraps attitude.

I almost wondered reading both of these articles. It made me feel like in a way the authors were almost like jealous. I was like you know you can also like just you can wear cool stuff and you're allowed to rest. you're actually allowed to rest without having a chronic condition because it was I don't know just the way that they it was particularly that paragraph about like pulling a 'sicky' that I was like you could just pull a 'sicky'. You actually don't have to pretend to have POTS or ME/CFS which like nobody is doing. You can actually just call in sick or rest. um having those conditions, it's much harder to get rest than it is.

Red: I think that's such a good observation. What's actually happening here is that that their kind of their core set of assumptions and beliefs about how the world works. They kind of being are under threat, right? Because they realise that actually um not everyone is doing what they've been doing, which is just submitting their body and mind to like the relentless capitalist like machine. People have actually been um seeking to understand why their body behaves the way it does, why their brain might behave the way it does, like seeking to have more understanding of, and empathy for, their health and their well-being and their body. And maybe this is just them feeling like everything they came to believe about what success looked like, what the world needed to look like is like all kind of crumbling down. And yeah, maybe there's just a little bit of jealousy, towards people who actually do have um a better understanding of their bodies, their minds, and some compassion for themselves.

Soph: Yeah, I think it's that, you know, plus a big dose of not understanding what it's like to have those conditions and the fact that resting all the time doesn't actually mean that you are rested. It is um how you cope and get by in the world. I do think there's a again, both of them referenced um trans people in their articles and I I think there is often a lot of rhetoric from people with transphobic views, that displays a kind of jealousy of the ability to know yourself or to like interrogate your identity and to break out from social norms. Um, and I don't think it's a mistake that um, Kathleen Stock, who wrote The Times article, is pretty public about her quote "gender critical views." Um, I think that those different oppressions and prejudices are like very much linked and are underlying the rhetoric in both of those articles as well.

Red: So, what do we do now? where we feel like this rhetoric, these narratives are beginning to emerge. Like you say, like you said right at the beginning, perhaps we've been waiting for this shoe to drop for some time. Um it feels like a lot of the emotional labor being done in the immediate aftermath of these pieces dropping were sort of were people who were essentially the kind of targets of this vitriol having to uh really work quite hard to validate or affirm their existence their experience of the world online. Where do you think we go to next? What is the role of the of disability communities more broadly to sort of push back against this rhetoric? And how how are our struggles more connected than we realise? as a wheelchair user, you know, it like strikes me that I haven't seen a lot of like wheelchair content coming out in support of our like mates with pots. So, how where do we go from here and how do we all sort of show up in support of each other?

Soph: I think part of it is just recognising that a lot of the ableist narratives that underpinned these articles were narratives that impact all of us in the community. like the idea that disabled people are meant to be uncool slash sad slash invisible or that we shouldn't be trusted or or doctors shouldn't trust us um or that we don't want to get better or that we should just suck it up or you know all all of those same narratives um affect can affect pretty much anyone in the community and in just in different ways. Um, so I think we have to keep identifying when ableism is being used in mainstream publications like this. And talking about why it's happening, challenging some of the logic that's being used in these stories. Um, and also I think just learning more about each other in the community is helpful as well.

And like, trying to make sure that we are connecting with people beyond just like people who share our same impairments or same experiences. Um because we don't want stories like these to start to create divides between us where we feel like there is some kind of competition for which disabled people get approval or get funding or um whatever because us being pit against each other doesn't doesn't benefit us as a community. Um, I think that the more that stories like these are coming out, the more it suggests to me that we actually are making disability seem cool and we are shifting some of those um tired ableist narratives about the community. And the backlash is because because we're having success in moving some of those narratives. So, I think um if people want to go out there and do photo shoots in their pink wheelchairs, they should they should keep doing that and we should we should keep showing up in all the very different various ways that disabled people look and live our lives. Um because we now, you know, thankfully one of the good things about the internet is we've been able to build stronger community um globally as well across disabled community. And I think we should keep utilizing that. Um, keep talking about these issues and keep being happy and disabled in public.

Red: Oh, couldn't have put it better myself. Um, thanks so much. Soph Jackson, it was a real treat to jump on here and dissect the discourse with you on this emergency edition of Crip Cafe. Uh, powered as always by our friends at Permobil.

Yeah, it's it it feels like uh there are interesting times ahead, but like you say, let's just keep showing up uh collectively in solidarity with one another and um with all the colors of the rainbow uh painted on our accessories of our disease.

Thanks so much!

So, see you four o'clock next week. Bye!