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Being inconvenient without apology

On average, being disabled costs over £500 a month more than not. Couple that with wrinkles in Britain’s benefit scheme that means disabled people don’t have true marriage equality, and you begin to realise how much work there still is to do to build a fairer society.

Rachael Mole’s mission is to help disabled people enter and remain in the workforce. Through her organisation, SIC, Rachael and her team are bridging the gap of ignorance, and helping people living with impairments and chronic illnesses to thrive.

As well as costing more, being disabled can impact your dignity. Mark shares a story of his application under the Conservative government’s Personal. Independent Payment (PIP) scheme, which is the last millimetre at the tip of the iceberg for what many disabled people face. That’s aside from being told we’re cheating the system.

Some of the questions Rachael had to ask herself as a young woman entering the workforce:

  • Can I talk to employers about my disability?
  • Can I ask for reasonable adjustments?
  • How much help can I ask for until I become a burden?
  • Once I’m a burden, are they going to want me?

Things to consider

  • Diversity of thought is essential to teams. That means it’s essential to hire people from different backgrounds.
  • Gen Zers are seeking to put their money behind organisations with ethics, sustainability, and inclusion in mind.
  • The term “purple washing” that Mark brings up relates specifically to the performative co-opting of feminist messaging.
  • disabled people don’t exist to provide inspiration.

Links

Let’s keep in touch

Occasional updates about new webinars, courses, and other things we create to make your podcasting life easier.

Transcript

00:00:00Rachael
Be yourself and then what I mean by that is I be everything you are with no apologies.
00:00:08Mark
You're listening to Ear Brain Heart, an experiment in showing up. I'm Mark Steadman and I have a disability, which is different from being disabled. It's something I have, rather than something I am. As such, I've never been a very good advocate for things like accessibility, except when it involves people failing to do the bare minimum.
00:00:34
But as I learned from my guests today, that's okay. Being disabled. As we talked about with Matthew Bellringer doesn't always mean being on point to talk about it. It's also expensive and frankly, sometimes a right pain in the arse.
00:00:51
Now this episode gets into some pretty serious territory. My guest is Rachael Mole, founder of SIC, and accessibility campaigner. She also has a disability and like lots of people under our current government is at the thin end of the wedge right now.
00:01:11
I try not to get into politics too much. Not because I'm unable to stand up for what I know is right but because, well, once you start, where do you stop? Well, we start with Rachael and I discussing the current state of affairs for disabled people in 2022, under a regime of austerity that forces those most in need to the back of the queue.
00:01:36Rachael
Let's be honest, like our government and our current regime don't care and to know that you exist within a society that does not actually want you here can put that burden of proof of like, almost, I have to prove why I deserve to exist. You know, that is emotionally draining. And I think the assumption that it should be down to the individual disabled person to fight for that is a wrong assumption, because we do not every day, have that level of energy to go into the world with when we are faced with barriers to accessing things from like food, housing, like we don't have marriage equality.
00:02:24
So a lot of us are unable to work or at least earn enough money to survive. So we have benefits, personal independent payment, and also, like they're moving over now, like a standard universal credit, but if you're disabled and you move in with somebody, you marry someone, you lose that benefit. So the expectation is that your partner will be financially the provider, which means that a lot of disabled people either choose not to get married because they're gonna lose their benefit and they need to be contri buting to the household. Or, and this is like, obviously not in every case, but it puts many disabled people in a very vulnerable situation where they're relying on their partner to be their sole financial provider. And there is a lot of financial, emotional abuse that could come from that. If you are relying on somebody to potentially like, especially like as if you need care, there is an expectation by the government that your partner will pick up the hours that they can't provide for you.
00:03:38
And I think, going into then, like whose burden is it to champion our cause we also can't blame nondisabled people for not kind of picking up that touch because it's a case of like, you don't know what you don't know, and if you've never had a disability, if you've never existed within our community, even like on the periphery, Then you just don't know because we don't have accurate representation of what it's like to be disabled in the media. There is so much bias, unconscious, but also like later bias. We don't have disabled people in the workplace. Unless you exist, like, within the community, you probably don't have disabled friends.
00:04:27
And these able bodied bubbles, we're slowly seeing it kind of burst with the surgeons of like mental health and neurodiversity, like conversations, which is fantastic. And by the way, like they are absolutely disabilities because we are disabled by society by having them working within like the social model of disability, which is the model that we supposedly have in the UK. So back to like whose burden is it to progress us? I would argue that we all have a responsibility to do a little. And it shouldn't be on one person to do everything.
00:05:11
So how do we start those conversations? How do we provide a platform to have those conversations in a safe way? And I don't mean like in a, oh my God, liberal snowflake way. I mean, this could literally trigger someone's PTSD, so no, this shouldn't always be like a lunchtime conversation over a sandwich. Like how do we hold space for these conversations in a way that is meaningful and therefore has an impact?
00:05:39Mark
I remember going to when the system moved to the, PIP from the disability and work thing, the D you know, all that stuff, so when, when that moved to, to the, the, the PIP, I remember going for an assessment and sitting with the, with the assessor who is just some person from this company, Capita, who runs half of it's a commercial organization who, yeah, you, yeah, you know it who run half of half of my local council anyway. Some person with, with no training, who then is doing my disability assessment and asking me if I take drugs and drink. And, that probably doesn't occur to someone without a disability, but that's, if, if someone is asking you that question alongside what are your needs, what are we gonna pay for? And then they ask you that, that's, that's quite, and I, you know, I, I refuse to answer the question because that's none of anyone's business.
00:06:36Rachael
Well, yeah, it's, a checkbox of is this disabled person disabled enough to deserve our sympathy and support? So I also went through that assessment at the tender age of 18. At that point in my life, I was house bound and I was bed bound. I did not have a diagnosis because doctors had continually gas lit me for many years. Um, I was under complete brown, the clock care from my mother registered nurse who, without her advocacy, I would not be here today. and during that assessment, I was refused care because I had brushed my hair that morning and I had maintained eye contact throughout the session.
00:07:27Mark
this is not an uncommon thing I'm hearing. Yes.
00:07:30Rachael
it's that the entire point of how PIP is structured is to demoralize and dehumanize disabled people. Into not fighting for it when they initially refused it. So they end up not having to pay out. And that leads to a system of utter oppression of disabled people, needing family and friends to step up financially and for care that really they should not have to be doing, because that care should be provided by the state.
00:08:10
It also leads to non-disabled people looking from the outside in, and just seeing load of disabled people, not getting the awards. It perpetuates the idea that disabled people are faking it, aren't bad enough to get it, are scroungers, benefit frauds. So it perpetuates that stereotype that when you say to a disabled person, why do you deserve this? Why do you need it? I should not have to relate my entire medical history to an untrained person. Like why do you need to know like toileting and showering and, and how all of that affects me to get a tick box to how much I deserve. Because it's graded as well. It's not just like one award. And you can go up and down grades. They can just pull that for no reason. It's utterly dehumanizing. But it's important to note, to be disabled in the UK costs around 570 pounds a month. More than if you were a non-disabled. So it, there is a tax for being disabled and then we're being refused rights, basically.
00:09:26
It's grim. Isn't it. It's not a fun, bubbly conversation.
00:09:31Mark
it's it is grim. Um, By way of helping us move from that into some, possibly some broader advocacy, when we have these kinds of discussions, one of the things I'm really interested in is how do we keep the joy in our causes? You know, if we, if we are trying to create change, if we, if we're agents of change, that means a lot of having to explain things to people. That means a lot of the conversations we're having now. In order to not go insane, how can you keep hold of joy and, and perhaps playfulness or lightness in perhaps your advocacy or just, you know, in the way that you show up with, with people?
00:10:14Rachael
It is difficult. I mean, the pure idea of disabled joy is uncomfortable for a lot of people, because there's that assumption of how can you possibly be happy? And it's like,
00:10:28Mark
How dare you?
00:10:29Rachael
Oh, yeah. Like, am I not allowed to laugh? Am I not allowed to love who I am as a person? Has society taught you that being disabled is like literally worse than death? I think from an individual perspective, it took me a long time to find joy through like just purely existing. And for me, I am in a position where I've made it my career to talk about this. So if I'm talking to like a very like specific person, it's about kind of trying to understand who they are and what their experiences have been. and rather than starting from scratch, trying to build onto whatever their experience has been, because at some point nearly every one of us will have experienced a disabling barrier.
00:11:23
And I'm a big advocate for bringing other identities into the disabled identity. So using the social model of disability, where impairment is separate. Disability impairment being the inherent condition, disability, being the barriers that society puts in your place, you could also argue that single parents are disabled, carers are disabled, people working, two jobs due to low income are disabled. Socioeconomic, meaning that there's been the lack of access to education. That is a disabling barrier. And once we start bringing in all of these different people, all these different communities with all of their different identities, we start being able to really bounce off each other and identify with each other and see ourselves in each other, and then ultimately that leads to conversations that are bigger than ourselves. And once we can see ourselves and other people, that bridge is formed and it leads, at least for me like, to utter joy. Because you've gone from being part of this quite insular community, disabled community to really feeling love and joy and acceptance from other communities.
00:12:46
I'm a white woman. I'm middle class, but I'm queer. And I've found a lot of my queer identity has come through me really embracing my disabled identity and exploring what that means for me. And we can see this like through gender, through race, through pretty much every single minority that exists. We all eventually find solace in each other. And there's a quiet joy. I think that comes from finding peers.
00:13:16Mark
I sometimes think of it as, um, as an UN clenching
00:13:22Rachael
That's exactly what it is.
00:13:24Mark
Yeah. It's just that moment where you can go, oh, there you go. Okay. It's it's, it's not just safety. It's, it's a feeling of just not having to pass, not having to put in that extra effort to limber up to a bar that allows you to function as a normal, you know. It's, it's people having no extra, what feels like extra requirements or, or needs from you, other than just your company. And, and so when you have those moments, you know, I talked about it with Matthew Bellringer, going to a low vision center, walking in and knowing it's okay if I look lost, it's because I'm just trying to navigate. And knowing that I don't have to feel self-conscious about that because this place is full of different practitioners at all sorts of levels who just get it. And, and it's, it's that it's like coming home to your family who've known you for decades. They've always known you to have a particular thing. And they might not understand the ins and outs of it like a specialist might, but they understand a little bit of that lived experience. And there's that, those moments where you can just sort of go, ah. They're really valuable.
00:14:28Rachael
Yeah, but equally it provides a space of celebration, because you know, you're not gonna have to apologize for your existence. You, You, know, our default setting is to say sorry. Like, sorry for the inconvenience of me existing in this space. And for me, one of the most liberated things was I, I've removed the word, sorry, from my vocabulary. You know, I apologize, genuinely apologize if, if I've made a mistake, but I no longer say the word sorry as like a default. And we like English, people do it like all the time. And once I removed it, I saw it everywhere. And it's, it is fun challenging people. Like, why are you saying, sorry? Like why, why is that something that you've just said to me? So within my company, sorry is banned. So it's, it's quite funny seeing, like, our new recruits joining us and, and saying like, I'm so sorry, I'm a minute late to our meeting because of this. And I just like, sorry, is banned. Try again. And it's like, thank you for waiting for me. Thank you for your patience. Thank you for holding this space for me. Thank you for accepting me as who I am. And that is way more empowering and celebrates our identity in a way that something as simple as language, the language that we use ourselves is oppressive to ourselves in ways that, you know, you would not even think.
00:15:58Mark
I had an unpleasant experience doing one of those. Walk through tests for the rona, having done a few of the home ones and there they can be fiddly at the best of times, but not being able to get any, you know, there, there was a local test center. Go down there. And it was, it was horrible. Because you have to be alone, and they are the, the people there are not really trained to be of much help. You know, I thought I could sort of get a bit of assistance, or even just a bit of, I don't know, reassurance or a bit of support or something. And what ended up happening is I spent, you know, 10 minutes feeling like I've taken up too much space and time, and asked too much of these people who, who, they're, they're just trying to get numbers in. And that is a, I dunno about daily challenge, but it's a constant challenge of figuring out how you allow yourself to take up quote unquote, extra space.
00:16:59Rachael
it is difficult because we've been taught that we shouldn't exist in these spaces. I mean, they're literally, literally not built for us. And I think that comes down to, if you are in a frame of mind that you feel you can fight this, that is a time when you should use energy to say something. But equally, if you're not in a frame of mind, and it is too much of an energy drain, protect yourself. Get yourself through it, and there is an option to pick up that fight at a later date. And if that is not something that you feel you could do, that's not your responsibility.
00:17:38
Even having, like I have an email, uh, draft saved that says I didn't experience good customer service. it was inaccessible to me. This is my condition, and this is how it affects. Please consider, uh, looking into retraining your staff slash please consider having an accessible policy in place on your website that's easily readable, slash delete as appropriate kind of email that's ready to go that I wrote when I was in a frame of mind that I could write that.
00:18:12Mark
I've gotta talk to you about that frame of mind, because it's like going to the supermarket hungry, you know, they say you should never go to the supermarket when you are hungry. Do you write that when you're in the frame of mind of so frustrated, or do you, you know, wait for that, the moment where you sort of feel okay, I can express myself without emotion. You know, is, is it important to have some of that sort of spiky emotion in there?
00:18:36Rachael
I think it depends who you are talking to. Because sadly, ultimately businesses only care about the business case. And there is an argument for presenting the business case to businesses about why they should be accessible and inclusive. There's an argument for not doing that because it's like, this is just the morally right thing to do.
00:18:55Mark
Yeah, and I'm a human and.
00:18:56Rachael
But businesses exist to make money. We live in a capitalist society. So being able to communicate, maybe I couldn't access your venue, so therefore, today you lost out on me and my friends coming to lunch. You've lost out on 200 pounds. You've lost out on like a six table cover, due to the fact that you were inaccessible. This is something you should look into. It's not on you to like, solve their problems, but I think if we all emailed companies to say how much money we would've spent with them had they been accessible, if we just all did that on that, it might get somewhere.
00:19:36Mark
I feel like that also helps in those situations where you do feel perhaps a little bit powerless or just so frustrated and perhaps, and I, I wanna get into shame and talking about shame as well, cuz you know, that's always a fun topic. Um, but in those moments where you feel perhaps shamed or shunned or whatever, to have the, the recourse to go, right, I'm gonna write such an email, or to know when you get back, I have this email prepared, I can make my case. I don't have to worry about now not havin the spoons, not feeling like I can advocate for myself in person, cuz that can, because so often I think you are dealing with defensiveness on behalf or on the part of the other people because they don't, you know, like you said, you don't know what you don't know and if you are criticizing, you know, especially if it's a small business, yes there are ways you can do that when, you know, it's a smaller business, but you are still probably gonna come up against defensiveness. And so being able to know, okay, I had a bad experience or chalk it up to, to experience, whatever, come home and know that I've got that, that I can send to them and explain, I think that can, that can be really helpful. Not having to feel like you've gotta have that confrontation.
00:20:47Rachael
And equally that confrontation might not be the safest thing to do either. Many of us are vulnerable and putting ourselves in a potentially even more vulnerable position by creating a, a situation that could become antagonistic, you know, we don't know how that party's going to react to us saying these things. There is a safety element, so pick and choosing our battles is a, I think a well honed practice that many disabled people have.
00:21:19Mark
when people used to ask me various accessibility things to do with the web, that used to be my job, you know, just making websites. I always used to have this sort of slightly bashful responsive. Like I'm a, a terrible advocate or accessibility person, because, you know, I just use what I use and, and I, I kind of get on with it. But there's a degree of shame there of not being able to feel like you can stand up and say, no, these are, you know, my needs that I have, these are where I struggle. As someone who runs a small business, um, there are potential avenues, there's access to funding. There's all sorts of things that I don't necessarily, and I suspect other people as well, don't necessarily access, because there is a weird degree of shame in there. And there are some people who will think, wow, that's a ridiculous thing. Why should you be shame, feel shame? It's not your fault. It turns out you do sometimes.
00:22:13Rachael
I think shame in the very British sense comes from almost, you are not allowed to ask for help. And asking for help is a weakness. And we have been taught that like, since we were kids, that you don't like you power through you, power on. I think shame comes as well from the fact that we haven't had conversations around disability and disability identity. For many disabled people, they may be the only disabled person in their family, so growing up or acquiring a disability and then not really having or knowing anyone to talk to about it, who, you know, you can have a conversation with, and it's not a pat on the head, you'll get through it, try yoga or cure you Yeah, is not always empowering conversations, and that leads to developing shame around asking for help. And shame then around the very like identity that you hold as an individual.
00:23:22
And one of the first things that we work on around helping disabled people get into work, because that's one half of, of my organization is confidence. The very first thing that we schedule in is a workshop on confidence, um, because it like 99% of the time it's been absolutely decimated. And if it was even there to begin with, and that I think is all tied to so many factors. Like name one disabled role model that you had growing up that wasn't a Paralympian
00:24:03Mark
The best one I had at the time was David Blunkett who was, uh, labor MP
00:24:10Rachael
yeah oh.
00:24:11Mark
Yeah. Yeah. Not, not, not super inspiring
00:24:14Rachael
Yeah. so, you know, I've have my disability since the age of 12, and growing up, who was I supposed to see myself in? No novels. I like, I used fantasy novels as an escape from my day to day. And there were no disabled people. And if there were, they were the sacrifice who they were injured in battle and heroically threw themselves in front of another character to say their life because their life was no longer worth living. And that taught me that identity of being disabled was also a negative. It came with baggage. I was a burden, it was shameful. And that all trickled into how I saw myself as a young adult. And it was really only early twenties, I'd had my diagnosis for a few years, and really, really reflecting on what my identity was, whether I could claim the identity of being disabled. I have invisible disabilities. So you know, that in itself was like, I, I'm not a wheelchair user. I don't use a mobility. Oh my God, I'm even disabled? Like if I just pushed a bit harder, I could like not be disabled. like totally negating
00:25:35Mark
If you don't look like the little figure on the parking space, then you don't count.
00:25:39Rachael
No, you don't. And all of that, wrapping into then, what is expected of me as an adult is to be a productive member of society, then ties into actually, can I talk to employers about my disability? Can I ask for reasonable adjustments, which is like in a way, asking for help? How much help can I ask for until I become a burden? And once I'm a burden, they're not gonna want me.
00:26:10Mark
That feels like it becomes even more of an issue as a freelancer, because my understanding is there are far fewer regulations and expectations from a self-employed standpoint. You know, I've gone to interviews as a contractor years ago where people ask me questions that you don't get to ask in a normal job interview, a normal salaries job interview, but there's this expectation there that if you've got two people equally able to do this job on a contract basis, rather than a normal salary basis, then they're gonna pick the person without the disability, because it's just quote unquote less hassle.
00:26:51Rachael
I'd even make the argument that they do that with employment and employees as well. Discrimination is incredibly hard to prove. Equally. It costs a lot of money to take a company to court and see them for that, which is out of the remit from many, most disabled people. Freelancing is probably the, um, number one, like way that disabled people get work, because employment is so inaccessible. Freelancing offers that flexibility.
00:27:23
It is a really, really difficult one, because this is leads into like, how do we change the mindset of non-disabled people to recognize the value of disabled people within their organizations? How do we make them recognize that, this isn't a, like a risky thing to do, hiring a disabled person. If you do it right, you actually have the access in place from the beginning. you can only win from that.
00:27:54Mark
Yeah, you, you, you learn more and also you gain more divergence in your, in your company think as well. Yes, you get the person who can actually do the job, but then in your team, you are also bringing on someone who's got knowledge and who's got life experience that could benefit the company and the organization, uh, and you know, even a brand as a whole, because you've got this insight that other people wouldn't have.
00:28:18Rachael
Hundred percent. Diversity of thought within organizations is the only thing that's gonna keep organizations going into the future, uh, especially as we're seeing gen Z coming into the workplace, being like the biggest potential spending power is, they are actively only engaging with companies that are ethical, sustainable, inclusive organizations. And that is very evident in something as simple as their marketing. Is their marketing inclusive? Do I see myself in their marketing? No? Okay, I'm not gonna spend my money with you.
00:28:54
I mean, the purple pound is massive/. 2 billion pounds a month is lost from not being accessible and inclusive to disabled people. That's our spending power, and we really need to be more mindful of where we put our money, and how we communicate to businesses that they've lost our money lost our money.
00:29:13Mark
Leading on from a conversation with Sophie Teton, is there such a thing as purple washing
00:29:18Rachael
Performative marketing. Basically performing monkeys is like a crude way of putting it. it's important for companies to realize that, to say, well, people, we do our research, we do our due diligence and we can spot it from a mile away. if you've got a disabled person advertising a product that is literally not accessible, we're not gonna buy it just because you've slapped a disabled person on it.
00:29:45Mark
I'm wondering about that, cuz I, I, I dunno if I've encountered that, but I know I have been asked, I have helped organizations gain work, not unbeknownst, but, um, without me getting a say in it, with someone just just saying yes, our, our teammate here is uh, is visually impaired and that gives us all sorts of other things. And it's like, we, we didn't agree that you could use my disability as ability as a, a peg in your marketing. You know, that that's, we, we didn't, we, we didn't agree to that.
00:30:16Rachael
That there's a big problem with that as well anyway. Another kind of crude saying is inspiration porn. I do not exist to tell you my story for you to feel inspired by me for purely existing and fighting the battles that you have perpetuated through in action. I am inspirational because I'm 26 and I've founded an organization, nonprofit, I hire disabled people and we are making active change. I'm inspirational because I've worked bloody hard for that. I'm not inspirational for existing with a disability. So if you are what you're taking from that is like, if she can do it, I can do it, no, that's not what you need to be taking that. I do not exist to make you feel better about your life.
00:31:02Mark
So this is a, this is Rachael. And, uh, hi, this is me back in the present. What a, um, what a conversation, eh? There's a lot in there, and if you want to dig into, uh, listen. A lot, a lot has been said in this episode. If you want to dig into the numbers and the stories behind some of the things that Rachael has been bringing up, then take a look at the show notes, because there are links there to some of the things. Cause you know, these are some of the stuff that we talk about here is if, if this feels new to you, it might feel quite bold, some of the things. And I think it's useful to be able to no, no, no, there's stuff that backs this up. Um, yeah, so yeah, go, go and go and check that out. You'll find it all at earbrainheart.com, where you can also drop your email address if you would like to stay in touch every now and again, I drop a little nugget in your inbox. Um, nothing, it's not like a newsletter or anything like that. Uh, just occasional things to say, here's something that I'm up to that you might find useful.
00:32:05
So, we are going to take ourselves a little bit of a break, and then we're going to come back with, I guess if you like season two. Coming, like, out of the traps, hot with an interview with Tamsen Webster, the author of Find Your Red Thread. Uh, so that will be coming in very early October, so do look out for that. If you are not already subscribed to the podcast again, earbrainheart.com has got all the links there, so you can never miss an episode.
00:32:35
So let's get back to this particular discussion. And as we recorded this, it was in the sort of end of spring, beginning of summer kind of period. And that meant, uh, with July heaving itself over the horizon that it will be time to celebrate Disability Pride Month, which is something I knew. Absolutely nothing about.
00:33:02Rachael
Disability Pride Month originated it actually in the us, uh, in the 1990s, it's a relatively young kind of, um, month of celebration. And that is what it is. It is a month of finding celebration in the identity of being disabled. It's about recognizing that the lives of the, the disabled people before us who fought incredibly hard, gave their lives a lot of the time for us to have the access that we have now, the accessibility tools that we have now. And I think it's about looking back and giving thanks to them and recognizing them, making sure that they're not kind of just removed from history. And it's about looking to the future and seeing how far we've got to go still, but finding hope and celebration in who we are as a community and giving love to ourselves and the next generation of disabled people to make sure that this is not a stereotype that we are prolonging and and, bringing with us.
00:34:17
We shouldn't be bringing with us the trauma and the negative shame that comes with being disabled. This is really a month of liberation. So take up space. I think sometimes having like a specific reason to do so helps. If you need to put it's Disability Pride Month at the end of every single post social post conversation, you know, do it if that's what makes you feel like you can take up space.
00:34:43Mark
Yes with that in mind then, you've given me, uh, and, and the listener, I think a lot to think about. Today's gonna stick with me. Where should people connect with you and find out more about the work that you do?
00:34:55Rachael
Yeah. I mean, start off with a tweet that you saw from me. So follow me on Twitter, uh, Rachael Mole, R A C H A E L M O L E. Follow me on LinkedIn as well for this kind of chat, but from like a business perspective. I'm on Instagram. I love sharing post just of sharing posts, just everyday posts that just give you a little bit of insight into actually like the disabled experience of that particular situation. Check out my business. It's SIC. S I C. We're at www.sicofficial.co.uk.
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