In the UK one of the first pieces of disability rights legislation was the 1970 Chronically Sick and Disabled Persons Act. Over the next three decades, disability rights campaigners made a distinction between illness and impairment, for understandable reasons but perhaps with hindsight, this has had unintended consequences. Language is returning to including both, so disabled people and people with long term health conditions is a common phrase. So if you created a Venn diagram of disability and of illness, how big would the intersection be?
To explore this we invited three people who have fine minds and long term health conditions. We speak with UK based Catherine Hale, Founder and Director: Chronic Illness Inclusion, to US-based Katie Elizabeth who is editor and author and a director of Stigma Fighters and David Ager, a Location Analytics Specialist who comes with his personal take.
We had a fantastic, personal and insightful conversation. We highlight why some people with non-visible conditions feel like imposters, or they are not always believed. Why identifying as disabled when you’re long term ill is positive. Where traditional models of disability like the social and medical models help and hinder. There’s some compare and contrasts with US and UK viewpoints and we finish by asking our guests, what would help most in the future?
LINKS
Twitter accounts for guests and their connected organisations
Catherine Hale
Katie Elizabeth
David Ager
Links to further reading
Chronic Illness and Inclusion Project (CIIP) –
Mobilising a Collective Voice for Social Change
Images from Rea, thank you, Rea. https://www.reastrawhill.com University of Leeds
Here's a link to Rea's blog https://www.reastrawhill.com/post/chronic-illness-and-disability-am-i-disabled
In the UK one of the first pieces of disability rights legislation was the 1970 Chronically Sick and Disabled Persons Act. Over the next three decades, disability rights campaigners made a distinction between illness and impairment, for understandable reasons but perhaps with hindsight, this has had unintended consequences. Language is returning to including both, so disabled people and people with long term health conditions is a common phrase. So if you created a Venn diagram of disability and of illness, how big would the intersection be?
To explore this we invited three people who have fine minds and long term health conditions. We speak with UK based Catherine Hale, Founder and Director: Chronic Illness Inclusion, to US-based Katie Elizabeth who is editor and author and a director of Stigma Fighters and David Ager, a Location Analytics Specialist who comes with his personal take.
We had a fantastic, personal and insightful conversation. We highlight why some people with non-visible conditions feel like imposters, or they are not always believed. Why identifying as disabled when you’re long term ill is positive. Where traditional models of disability like the social and medical models help and hinder. There’s some compare and contrasts with US and UK viewpoints and we finish by asking our guests, what would help most in the future?
LINKS
Twitter accounts for guests and their connected organisations
Catherine Hale
Katie Elizabeth
David Ager
Links to further reading
Chronic Illness and Inclusion Project (CIIP) –
Mobilising a Collective Voice for Social Change
Images from Rea, thank you, Rea. https://www.reastrawhill.com University of Leeds
Here's a link to Rea's blog https://www.reastrawhill.com/post/chronic-illness-and-disability-am-i-disabled
Announcer 0:00
This is The Way We Roll presented by Simon Minty and Phil Friend, you can email us at mintyand friend@gmail.com. Or just search for Minty and Friend on social media. We're on Facebook, Twitter, and LinkedIn.
Simon Minty 0:22
Welcome to The Way We Roll with me Simon, Minty.
Phil Friend 0:25
And me, Phil Friend,
Simon Minty 0:26
We like to explore the big issues on the broad topics of this show. And if you're a regular listener, you will have heard us grapple with the commonalities and the differences between disability and long term health conditions. Now, where does disability stop or illness start? Or can you even identify such points?
Phil Friend 0:44
As many of you will know, I'm a very passionate advocate of the social model of disability, which is identifying society's barriers that exclude disabled people. How does this work for someone who is in constant pain? Or has limited energy? What is the barrier then? What adjustments could we make then?
Simon Minty 1:02
Plus there's a huge topic of identity. Now I like my disability identity, it's kind of part of me, and I've embraced it, and particularly through disability arts, but we also know there's a bundle of disabled people that don't want to be defined as disabled, and some who might and then, would anyone who's got an illness or energy limiting condition want to be identified in that same way? Is there strength in being part of a community? Or are the differences perhaps just a little too different?
Phil Friend 1:32
So we decided that we needed better people than us to explore this with we will introduce them in terms of who they are and what they do. And we will all also ask them to briefly explain what the condition is. So we have some kind of context. So firstly, let's welcome Catherine Hale. Catherine is the founder and director at chronic illness inclusion, and she does research looks at policy and disability rights. Hello, Catherine, can you just introduce yourself?
Catherine Hale 2:01
Thank you. It's fantastic to be on this show and talk about this subject. So yes, I did set Chronic Illness Inclusion . That was a research project four years ago, and we've now just become a disabled people's organization Chronicle Illness Inclusion
Simon Minty 2:18
Our next guest is Katie, Elizabeth. Katie is an editor and an author and on the board of directors of Stigma Fighters, and reading it s he says disabled and chronically ill, despite the fact that I look just fine. Hi, Katie. Can you tell everyone a little bit about yourself?
Katie Elizabeth 2:33
Hi, I'm so happy to be here. I feel like I always sound a lot fancier that I feel. I feel like I'm just getting started and trying to listen way more than I talk. But I think I'm bursting through that wall today a little bit. Thank you so much for having me.
Phil Friend 2:51
Also in the US, but a Brit abroad is David Ager. David is a location analyst. Sorry, he's a location analytics specialists, plus a fan of music, cricket and Swindon Town, that's a football club, by the way. David, can you introduce yourself and include what a location analytics specialist is?
David Ager 3:12
It's a fancy name for Geographical Information Systems. And this is basically for data analytics. So it sounds a lot fancier than it actually is. And yeah, as I think you've pretty much covered everything in terms of what I I'm up to, really. So yeah, I came over here, March of last year. And yeah, working with planning department of my local school board.
Simon Minty 3:37
Thank you, David, I suspect our language will flow in many ways. And there might be some open and honest feelings. And you know, if this may effect, you may want to have a little think if today is the day that you want to listen to our show. Now, regarding regarding terms, I know, I know different phrases like long term health condition chronically ill or sick, energy limiting conditions, that was Phil, we're talking about that very recently. And then things like enduring pain, and then there's others and we may use these interchangeably. And it'd be lovely if our guests gave us some clarity before we start. It's a weird thing we do on our show, we go tell us what you got. So you're you know, you're valid on the show. I'm Catherine now how do you describe that part of you.
Catherine Hale 4:22
Um I guess I've always thought of myself as having a chronic illness. But I very much identify as a disabled person and have done for a long time. Although I do think it's a long journey that people go on, you know, when you become chronically ill, it does take quite a long time before you may identify as disabled for many people. I love the term energy limiting condition. I like to think that we at Chronic Illness Inclusion kind of, you know, played a big part in developing and promoting that term. Along with energy impairment, or energy limiting chronic illness, we kind of use them pretty much interchangeably. So yeah, I do use that language very much. And I hope others feel that it's kind of speaks to them to,
Simon Minty 5:11
Katie where you are on this and how you describe yourself in terms of condition,
Katie Elizabeth 5:16
I certainly use the chronically ill at more to describe the things that I'm really frustrated with about my conditions. As for the term disabled, it is absolutely more of an identity. It describes a community that I have found, and I'm extremely proud to have found that community. I think that Twitter where I have found all of you has been an extremely, extremely supportive area for that community. It is not something that I feel any shame about to have. As far as mental illness, I'm still working on where that lies, because I know that some people are either they have or living with mental illness, and I'm still working on where that falls for me.
Simon Minty 6:12
And, David, I know you were hesitant, you hesitant coming on the career development course, because it was for disabled people. And then hesitant for this, this. What's it called podcasts. But I because you are for want of a better word, a regular person living with your condition. And that was exactly why I think you're great for this.
David Ager 6:33
Okay, I appreciate that. And yeah, thanks again for inviting me onto the show. Um, yeah, it's tricky one. I mean, I'm, so my hesitancy is nothing about not wanting to be seen as disabled, it's more of the do I belong in this group? Because it's, I don't know, it's a court, you talk about the social model and medical model, there might be something we talk about later. But it's kind of it's weird. It doesn't fall perfectly into those groups. I mean, I so I would say that I have ME to people, but then usually get what's that? And then I'll say chronic fatigue syndrome, and you sometimes may, people may have perceptions of what that is. So that's how I define myself. I, I do define myself as disabled, I mean, both in a legal sense, and also in a community sense. But maybe, I haven't been as involved with community as much as I, I would like or should do, because I feel sometimes I do worry like, if potential employers see that for there maybe that may count against me. I am fortunate in the position where I can work. So I appreciate that's not not easy or possible for many people. So yeah, that's kind of where I'm at. It's a complicated one. Basically,
Phil Friend 7:53
the purpose really of, as we said, at the beginning, to get these three fabulous people together was to get some real kind of insights into the issue. And I think there are three broad areas that we want to unpack if we can. The first one is around what are the similarities and differences between disability and illness? This is a real conundrum for a lot of people. I think David just articulated some of that. The second is do you think social model by removing physical, attitudinal and policy barriers? Is the right in quotes cure? Or solution for those who have to manage long term health conditions? And finally, if we've got the time? What are the changes that we need to make to make life better? So perhaps, if we start with the first one, which is what are the similarities and differences between disability and illness? Catherine what what's your take on that? Where would you take us?
Catherine Hale 8:55
OK so in terms of illness, what what society basically thinks about when you think of illness is that something you either recover or you die, but then you know, when we come to chronic illness, that's that's a different thing, isn't it and when someone has a chronic illness, and it significantly impacts their day to day life, and they are, by definition, legally disabled. So I think it's actually a false distinction to say that chronic illness and disability are two different things. Because my take on it and our take on it and chronic illness inclusion is that the impairment you have with chronic illness is a type of disability or type of impairment if we're going to use the you know, the right language. The You know, there were kind of simplistic stereotypes that, that chronic illness and disability are different because people with chronic illness want a cure and they want to recover. Whereas disabled people want to be included in society as they are and to have like the level playing field in society and therefore we're kind of two different groups of people because our aims are opposed to each other. And another kind of stereotype is that for for disabled people in the disability movement, disabilities out there in society and in the barriers, whereas for people with chronic illness, we say that no disability is absolutely in our bodies and no amount of kind of external changes can can, can deal with that. And that therefore, some people say the social model isn't helpful to people with chronic illness. But I think that I passionately think that we need to get past this kind of, you know, the these perceptions. Because while most people with chronic illness do want better medical treatment, and they want a cure, or they want to recover. However, there are some really kind of political and gender related reasons as to why some diseases aren't prioritized. So the disadvantage that comes from chronic illness isn't just from the illness itself, but it's about how society or the medical profession view certain diseases that, for example, affect women more than men, and the historical asociation of women with hysteria. And there are real sort of power politics at play in terms of how diseases like ME, are treated within within the NHS. And in some cases, treatments are being put forward to people that that causes harm. Now, all these things are things that are outside of our bodies that are going on in society. So I absolutely think that the social model is really, really relevant to to kind of looking at chronic illness in that way.
Phil Friend 11:37
I'm very conscious, there may be differences between the US and the UK, and particularly healthcare and those kinds of areas. But I wondered as well, Katie, whether there were real differences about how disabled people and people with long term health see it in the US is all it from what Catherine described?
Katie Elizabeth 11:56
I don't think so. Because I this first question, I since you sent it, I've been trying to think so much about it. Um, and I think in some ways, there are no differences. But then the more I think about it, I think that if all of the barriers got removed to accessible places, if every single building started getting ramps, if we started getting accessible bathrooms, if every single place started using things that were had things that were available for people that had low vision, or hearing that they needed ASL, or some form of closed captioning, or something like that, it's still I still would have barriers personally, because of my chronic illnesses. Just because the way that society is set up, because it moves too fast for me, I need day to day, sometimes hour to hour, I need things different for me, because my energy changes so much my cognition changes so much. And if we make the entire world completely accessible on a disability basis, it's still not going to be everything is not going to be available to me because my chronic illnesses.
Phil Friend 13:25
So if I if I push you, one of the one of the things that I would suggest is a barrier that we need to remove is is the attitudinal one, it's my view of you. So ramps and bathrooms and all that are all very nice for me in my wheelchair, they don't do anything for you. My attitude towards you the employers attitude, society's attitudes, if that were adjusted, so that people understood and one more tolerant and patient and that would that fix it? Or is this still stuff that would have to be done,
Katie Elizabeth 14:00
I think there still would be stuff. I even now I am a cane user very recently, um, and I have learned so much in the past few weeks, what that means in society, especially as a very young person, people go out of their way to stop and stare at me at this point. And I never realized how heavy doors are, until and I had to open a ton of them with a whole bunch of other things in my hand, like a bag and a bottle of water. And how often people are just willing to move it out of my way because it's in their way. That part especially since we are still in a pandemic, people just take it from me. And that is just unbelievable. That is it's just like oh, this is this is in my way. So I'm gonna move the thing that helps you um, and I don't think in any capacity, that part would change. Because that's just a really like, it's a very self thinking attitude that this thing's in my way. So I'm gonna, I'm gonna move it. And I'm not going to think about the fact that we really shouldn't be touching anything right now, that doesn't belong to me because of germs. Um, and I think that because I look, even with the cane, as soon as I put it down, I look like I'm fine. People don't think about that. The brain, especially in the case of my brain injury, it affects everything. I can say to a doctor, I can say to my friends that I have a lot of like cognition, verbal things, I have a lot of mobility things. Um, it affects it affects everything. It affects how my like, urinary tract moves, it affects everything. And you say that to people, and they're like, they don't quite get it
Simon Minty 16:05
I liked your line of I am but, just because I look fine. And I do hear that from people with non visible conditions, I also get that bit, they go well, it's it's not as visible and you and Phil it's so obvious. And it Oh, and then it's quite hard. And then there's this sort of imposter thing. But I'm gonna ask maybe ask this to you, David. But it's not directed at you. I can think of three or four very good friends with energy limiting conditions. and they'll say it's all very well, this barrier removal, but it's in me, I've got something that stops me, and I've can't get out of bed. And I can't do this, because I've just not got enough energy, or I've just not got the whatever it is on this day, or it's fluctuating, I can't predict it. And that is why I kind of go, I get my head explodes because I, where is that external? Or is there a solution? Or what happens when it is deep inside?
David Ager 17:01
Yeah, and it's, I mean, I wish I have the answer. Probably, I mean, until there are cures, or whatever that may be for different energy limiting or chronic conditions. I mean, just just thinking out of my head, like I remember in past jobs, it's, I can tell it's a real headache for HR for because, like you say, for things like, if you are a wheelchair user, or if you have a visual impairment, I say it's an easy fix. Obviously, it's not as simple as that. But generally, it's you can make adjustments to make things accessible for things with where it's pain or energy conditions. It's very, it's not easy to make those adjustments there are some things you can do for instance, having things like lifts or elevators. Yeah, I'm integrating. Yeah, I'm learning English again. Things like that help, obviously. But yeah, I think then it is kind of it's up to the flexibility of employers as well. I mean, one of I don't want to say a pro of COVID. But you'd like to think that flexible working has been seen you hope by companies to be something which actually does work or can work. And that could be an advantage to people with such conditions to work from home, things like that. I think the other thing though, it's we talk about the social model of medical model. I mean, I feel that it does fit very well into the social model. I think on most things apart from the cure, often we element which is probably more to the medical model. I'm not a sociologist, I don't know.
Phil Friend 18:58
Okay, so I have a physical condition and, and it's fixed and you know, and it's visible, and so on. But at night, is I don't want to trivialize this but I'm trying to find a way of equating my experience with the experience that you three guys are having or three people are having, which is I can't scratch my foot. And the only adjustment for that might be I don't know someone to come in at 3am in the morning to do it for me
Simon Minty 19:27
Th at's my job. (Laughter)
Phil Friend 19:31
So it's kind of you've you've, you've dealt with all the physical barriers, they're all sorted, everything's great, but I've still got this bloody itch on my big toe that I can't scratch. And it kind of feels like that. When you three are talking about how your life works but ultimately however hard we try, you are still left with this thing that you have got to manage in some way. I can't help you with
Catherine Hale 19:59
Yeah, I want you to Come back on that because it is true everything you've said that you know with some severe pain or energy limiting conditions no amount of barrier removal or assistance is gonna help you you know go out get out and participate in society but the disability rights and the Human Rights aspect of it is still absolutely crucial so if you're bed bound or house bound, you know I was bed bound for time. If you are house bound and you still can't get a house, you absolutely need like domiciliary health care services and at the moment people aren't able to access those you know there's no awareness of the need for kind of health care services in the home for people who are of working age it's so it's only geared towards older older people in the community and and you know, as we've seen in the pandemic, with remote access technologies zoom and what have you, you can take part in society right we've been able to join choirs and quizzes and and all the rest of it and this wonderful technology is here and it's and we you know, and it's absolutely workable there's no more excuses say Oh, it's too difficult we can't do that. You know, so the provisions are there actually to include a lot more people with chronic illnesses who are housebound in society and you know, that's why I think it's so important to take the Disability Rights approach to chronic illness because you know, these kinds of things are neglected otherwise you know, then the importance of remote access and and domiciliary services is something I really think we should be fighting for for people who can't leave their home
Simon Minty 21:37
I've learned that from you Catherine from your your writings in your work and this so I remember being 25 and getting the blue badge for the times that I needed it because then it helped me so sometimes identifying and that group gives you access to other things and that's what you're saying is you're not saying everything is the same but by getting that identity that gives you protection access a whole load of other things I mean, I suppose some people will argue but I still don't want to be part of disabled groups but that's a stigma thing and something else I mean you're Catherine your organization chronic illness inclusion says it's a voice for disabled people with energy limiting chronic illnesses, energy impairment and chronic pain. Does that sort of work naturally is that a smart title so everyone's part of it and included and is it I don't know what my questions but you've probably got a good answer
Catherine Hale 22:27
Yeah, that's the idea really is is that we felt that we need to come together and have a voice so not just people with ME advocating people with ME and people with fibromyalgia people Fibromyalgia you know, we have so much commonalities in our experience of energy impairment and energy limitation that we need to come have a voice together and not only fight for, you know, treatments and cures for diseases but fight for social justice and disability rights as well because no one else is doing it. And it's just been neglected and you know, we haven't had that collective voice before. We think it's really really important that people with different chronic illnesses different diagnosis come together, to have a stronger voice and, and be part of the disabled people's movement.
Phil Friend 23:12
It's interesting, isn't it because deaf people for example, those that use sign language or ASL in Katie's case in a sense broke away you know, they said we are not disabled we're a linguistic minority we are you know, dum dum. But here we got an example where you are fighting to get in, you know, it's as if the movement such as it is, is keeping you out. Katie, what's the experience in the States over this? I mean, I'm not very up to date, I must say and how the disability sort of rights things going on in America, but is this is this a struggle there too.
Katie Elizabeth 23:49
I think it sounds very similar. I think there is a huge stigma attached to having any sort of disability help here. Because it the idea of it is that you are a drain on the system. Even though it is exceptionally hard to get disability benefits mostly people have to hire lawyers, they have to wait years. It takes so long that there are an exceptional number of people that die waiting for disability benefits. It's really it. It's hard here to get any sort of disability help.
Phil Friend 24:35
But do you think the disability movement as it is in the States is accepting and welcoming of people with long term health conditions? It is Okay, then. That's good news. Yeah,
Simon Minty 24:47
I was gonna dig a little bit deeper and maybe come on to David on this. I have friends who've got dwarfism in the US and in here in the UK, I might get a benefit that will allow me to get a car that then helps get paid adaptions Friends with dwarfism in the US have to go to other people to try and fund that. And it's so it's, I'm, I'm almost why, what is the solution for you there because if you can't get the support, and you got a bit of a stigma, you're really in a difficult place, if you're not haven't got income or something, how do you survive?
Katie Elizabeth 25:18
It's hard, I think there's a huge catch 22 that really forces people to continue to work. Um, there's also, a lot of times people are forced into really abusive relationships, because then they have to rely on that person's income. Just to survive a lot of times it, it gets really, really hard for people to decide how to survive here. A lot of people if they do get any sort of disability, if they are on SSI, their asset limit, meaning any sort of like their car, anything, they own anything, their bank account cannot exceed $2,000. And they cannot get married, if they are on SSI, because then it's the combined assets asset, or $1,000. Oh, right, yeah. And then, if you are on SSDI,
Simon Minty 26:22
it, what are SSI and SSDI,
Katie Elizabeth 26:25
it's social security insurance, and then Social Security Disability Insurance. And the difference is, whether or not you have ever worked or whether or not you have gained work credits. And then that's the difference between how much you can get a month. And if you go over that, then you lose the amount of money in work credits and the insurance that you get. And it's usually assumed that the money that you get every month just goes back to pay insurance.
Announcer 26:59
You're listening to the way we roll with Simon Minty and Phil Friend.
Phil Friend 27:03
So David, are you as a working person, someone who is managing somehow to both deal with your condition and also work? Do you live in total fear of losing your job? Because your illness makes you, this is my word, by the way, I'm also sort of, in quotes unreliable, is that a real fear for you?
David Ager 27:28
Um, good question. I mean, I've just started my job like a couple of months ago. So I'm hoping that they don't get rid of me that soon. Um, but I mean, past jobs. Yeah, it's this kind of thing of where, for instance, I'm not going to name names or jobs. But, I mean, generally, I felt was a reliable worker, as much as I can, could be. There were certain adjustments, which I don't feel were fully in place or able to be in place to be fair to them. But it was, on the one hand, take off time, if you're, so quite often I will push myself through, even if I'm feeling not great. I push myself through the pain, I'm not sure whether Catherine or Katie regardless of employment situation, you get these situations where you will push yourself through. Because you have to or you feel you may get some benefit from it or whatever. Then there's the cost later, and I think is something which is very hard for HR or managers or whoever to, to adapt for. And I appreciate it's not an easy thing from outside. But, yeah, on one hand, you push yourself through it. And if you end up having a long time off, then it's like, well, why didn't you take time off or have a few hours off or go home when you're sick. But then if you take off sick leave, it's like, oh, you're taking too much sick. So you're in this catch 22 situation. But the thing is, I like being part time is not really financially viable. So it's this. I think this is where we talked about social model and things like that, in a way you're having to adjust and battle through pain and your symptoms to meet society's standards for want of a better phrase, that to be for nine to five or nine to six or ever your hours might be to live a quote unquote, normal life, you're always trying to have as normal life as you can. And I'm fortunately in a position where I can even work as people, many people who I mean it goes right down to people who have sadly passed away with a condition or similar conditions. So it it's not an easy answer.
Phil Friend 29:56
No, but I think I think your image of it I like I don't like the image but I get the image you portrayed of it sitting behind you watching you waiting to pounce kind of thing I
David Ager 30:08
know in some people talk about walking depression. And obviously ME and chronic limiting conditions our mental condition, but you're kind of you're, you're getting through. And also the other elements of it regards to social model is that you kind of it is somehow some ways possible to hide it. So I've I've currently I've not actually mentioned it to my employers, when I when I signed up for job I mentioned I disabled but whenever it's interesting when you apply for jobs here, and I may be wrong on this, Katie, but you register and so you're, you're identified disabled, but you never mention the condition, I don't know if that apply to all jobs for that seem to be common in a lot of jobs I applied for, I didn't seem to be much talk about afterwards. And it's almost up to you to come out as it were. So it's actually everything. Like, having a certain amount of functionality to try and do, quote unquote, normal things. I it's almost this thing where you have to come out, if that makes sense. It's also I mean, I, I also use a cane, but then it's kind of sometimes I'll need it sometimes. Actually, I'm probably okay. But the problem is, it's like, sometimes I won't use it when I do need it walking around the office or in a certain situation where maybe I do need it, but you don't want questions one for questions. And two, like, he was using it yesterday, but now he's not and vice versa. So it's this whole, and that's before we get into the whole thing of conversations about perception of conditions, when people actually do talk to you.
Phil Friend 31:56
Thank you. I mean, that's, that's, that's very helpful. It's very helpful. And I think the distinction in America. You know, here, it's illegal to ask people now, about their conditions, it's illegal at the point of applying for jobs ask, it sounds as if the American system is a little similar, but slightly different. But yeah, we'll check it out.
Simon Minty 32:19
From my experience of work in the US, I think it's up another level, there's, I mean, we're nervous about this as a conversation. But in work, I think talking about disability is even more of a as a hesitation. And as that little irony that you want to have a relaxed conversation about the accommodations that you might need. And that's where it starts as David's bit about coming out. I'm conscious of time, and I don't, although I do want another two hours with you. There's an ironic with the conic. And all the energy limiting that we do the longest show ever and I the mentioned COVID. A few of you mentioned COVID. And I had a friend dinner last night, she said it's weird, we have to even dress up now I'm so used to wearing relaxed clothing. And I hope that the changes we've learned from COVID about anyone can turn up as they are, and on screen and all those things. I think this has changed the game. It hasn't solved it. But it's pushed the dial better in terms of disability, particularly with energy limiting, I hope it's a start being I'm, I'm interested in, you know, the best solutions. And whether you identify or not, or whether the US and UK differences. I guess this is a stupid question. But what would be the best changes or help that you can see whether it's societal, or employer or whatever it may be? I mean, I might start with Catherine, you look like you're nodding.
Catherine Hale 33:43
This is a great question, because actually at the moment we are doing survey with Disability Rights UK. And we've asked people with chronic health this exact question, we said, name three solutions to make life better for people with chronic illness, apart from obviously being cured from your disease. And it's so I've actually been analyzing all the responses, I can tell you what, you know, actually, hundreds of people have said, and they've said remarkably similar things. And in fact,
Phil Friend 34:14
Are we hearing this here first is this a world exclusive?
Catherine Hale 34:23
So how do I say this scientifically? The vast majority of people so twice as many as said anything else. What people said was understanding awareness and education around chronic illness and especially energy limiting chronic illness, so that people society, employers, disability assessors, and even healthcare professionals actually need to understand the lived experience of chronic illness and perceive it as a type of impairment or disability. And that was like, you know, like almost half the people who replied said that thing unprompted, we didn't give them tick boxes, we just said, write whatever you want. And, and half the people said that we need understanding awareness and education, of energy limiting conditions, and we need to be believed, respected and taken seriously. And I think Phil was saying earlier, you know about attitudinal barriers. And one thing I'd say that with chronic illness and invisible illness generally, like the main negative attitude that that people face is disbelief, you know, don't look disabled, you're not a proper disabled person. You know, you're you, you say you're tired, but everyone gets tired, I was tired, you know, it's it's that kind of belittling, of actually our impairment experience, that is probably more than disability discrimination. In a legal sense, the disbelief is, is the thing that oppresses us and that kind of holds us back even from identifying as a disabled person, because you just internalized the sense that, that you're not a real disabled person, you're an imposter and you're not even allowed to identify as disabled. So going on to other solutions that people said, in the workplace, people say we need genuine flexible working so that you can adapt it round kind of your, your good periods and your bad periods, you can work whatever times of the day, you're able to, we need much more opportunities for part time work. And I think David and we know we've all said this already, but part time work is the main kind of adjustment and accommodation we need, and working from home. Because then you avoid like the energy drain of commuting or sort of office environments that can be really draining. And we need obviously up employers who understand and a change in sick leave policies and that's what David has alluded to, I think that issues around sick leave and then going on a bit breathlessly because I really want to share these findings with you. But in terms of kind of access to public places, and getting out and about obviously, wheelchair access is really important because some of us use wheelchairs in need to use wheelchairs when we're out and about. But the other main thing that kept coming up is seating much more seating in public areas on public transport and spaces where people can rest you know, if people are able to sort of stop and recharge when they are out about then they can actually kind of cope and and you know, go out and do something and and also in an office environment places quiet places to rest. awareness that some people may need to use a wheelchair some of the time and not other times. In shops and restaurants, background noise can be a really big issue is for me absolutely stops me going out you know, if if there's background noise in a bar restaurant, I can't go out whereas if if it's a quietly in someone else's house, then I can go and see friends. And then the remote, you know, the the kind of online access to everything, like learning socializing, political engagement, you know, so many things that could be opened up to us if if they were made available online. Shall I carry on?.
Simon Minty 38:16
I'm gonna, we're gonna pause, you can always put a link up there. I mean, there's so much poor old Katie and David will try and add something to that. Thank you, Catherine. I mean, Katie, is there anything from your point of view that would change the game,
Katie Elizabeth 38:30
I think so much of it is the social model and understanding how much of it intersects with other things, how much that there becomes a problem that binds with racism and misogyny and understanding that mental illness is also a part of this because mental illness is and can be chronic and a disability. And that doesn't mean that we can't also bring that into the conversation, we can also bring in how racism affects people how misogyny affects people that as hard to time as I have. That doesn't mean that somebody who is a black trans person is going to have a much harder time with healthcare with anything with getting validated with any of their illnesses, and you add mental illness into a conversation. Somebody can have mental illness and a physical illness. But I have been told all of it's in my head, which I think is hilarious, because guess my brain injury is in my head. You can have both. And we need to be having more of those conversations. And I think if we can continue to have those conversations and be louder about them, we'll fix a lot of the problem. Catherine had said before about how women used to be told they just Had hysteria. We're doing that still just in different ways. And I think if we are able to remove some of that we will have a much easier time.
Phil Friend 40:14
I think just before we ask David, what he'd change, I think you're reminding me that we can't ignore the whole person, ie that a woman will experience this differently from a man that a black woman might expect, you know, that kind of thing. And I think certainly when Simon and I, and David was on one of Simon's courses, there is a real need for us to recognize that it's not just about disability, it's about the context in which it sits, and your gender, your race, your religious beliefs, all that stuff is playing really powerful tunes, and we can't ignore that as well. So that's all I think it's a well, well made point. Katie. Yes, that that whole and Catherine said it. This idea that women are hysterical, you know, come on, I've met some pre hysterical blokes, actually. David, what would you add? Is that something buzzing around in your head that you think would just make such a difference? If it could happen?
David Ager 41:06
I mean, most things have been covered. So that's me done. (Laughter) I've got I've got some things. I mean, I totally agree with points Catherine and Kate, Katie, have made. And I think it's I think the point about chronic conditions, and things like that, there is an issue where, because it's traditionally, I mean, yes, as a percentage more, more women get develop condition, these kind of conditions that it has seen as a, quote unquote, feminine illness. And that's partly why various I feel it's either a conscious or unconscious neglect, I think all in the healthcare industry, both on both sides, Atlantic and wider. And we're going to be and there's other factors here, as far as, like you say about race. I mean, I, I forgot the statistic, there's two, I think it's 250,000s people in the UK have ME, and maybe similar stats for similar conditions. It doesn't seem logical that it's only in white, Western European countries. And I think it's, a lot of the stigma can go right back to I think in the 80s, it was called yuppie flu, at least in the UK in the Daily Mail, or Daily Hial as I like to call it we're losing their listeners. (Laughter) but yeah, it factors in other countries around for worlds and let alone, for communities within of black. BAME communities within the US, UK, Europe or wherever, that I mean hard enough as a as a white, woman or white male, to even get diagnosis. There's one thing like getting a diagnosis, I remember when I first started developing the condition. And one of the doctors I see said maybe try drinking a can of Coke, or have some caffeine first that will sort you out. And I'm sure people who have similar conditions or same condition will probably have similar stories. And I think as a guy I feel guys have it's very much a macho physical element to to being a guy which is something I've no prescribed to anyway, regardless whether I had a condition or disability, but I feel that there's probably you've seen as less of and I've had things where I remember one time at uni Some said you're put onspot. I Oh, what's the walking stick about a new trunk or a big trunk straight and honest and explain it? And as succinctly as I can can I explain my life succinctly in a sentence about it's like, Oh, so you just lazy then. And then it's just like, and that's why I mean, I was a bit nervous to come on this podcast, because it's very unusual for me to even talk about this even just to close friends and family. So I mean, well, I
Phil Friend 44:24
I think we're, we're, I'm personally very grateful that you are I think it's fantastic that you're doing it and it does require a certain amount of that dreaded word amongst disabled people courage, but you know, there are times when I think what you're suggesting, David, I like I like that. I don't like it but you're raising this issue of men having to be strong and fight through these things. And women of course, we've got to stop being hysterical and then they'd be fine. You know, it's that you're you're giving us some real issues. around gender difference, and so on and so forth. But, but thank you. I mean, that was that was very, very helpful, very helpful. Well, if we, if we draw all of that together, I mean, if we draw all that together, it comes back to something Catherine said, I think, almost at the beginning of all, one of the things that came out of the research, which is being believed, being seen to be real, this is serious, it's not trivial, that kind of thing.
Simon Minty 45:27
And I've got a sort of a few points. And thank you so much to all three of you. Even that last point, you mentioned, David, I know Catherine, we'd spoken about that that sort of energy, forced energy exercise, or whatever it may even graduated, I'm very impressed, David, that you are prepared to sacrifice a point for the sake of a joke, I agree with you there, you know, don't worry about the point, we just get the gag in. So I was very pleased that you did it. And I remember doing a thing for Ouch. And there was a male who came along who was an artist, and he said it was so hard for him to get diagnosed. Because it wasn't meant to be. And I mean, again, we've got all these different levels of of diagnosis and beliefs, and so on. And I wanted, we've got a bias in this room to a certain degree, which is the Zoom Room, which is the somewhat leaning towards the social model, some acceptance that there are external things that can solve this. And I know, because there's people who say, hold on, doesn't count, my pain doesn't count my energy limiting. And this is a shout out for anybody who is listening, if they're furious, come and talk to us, because we, you know, we can do more shows, we can debate this, this is not this isn't one to solve them all. And I, the reason I wanted to talk about this, I remember when I started training with Phil 20 years ago, and we used to distinguish between disability and illness, it was a real thing to do, because as disabled people, we didn't want to be seen as ill because then we'd be seen as unreliable. And it was completely separate. And there was a real push away. And I'm feeling that's damaging that needs to be how do we rejoin that to not you know, both of us who've got stigmas we might not want of the other. But there's more in common than we have in difference? And how do we bring that back to sort of be more supportive, and understanding. And you said, it Phil it keeps coming up this whole level of trust and belief and understanding, which is clearly lacking. I just feel the numbers of people and the voices that we're hearing now is, is pushing it.
Phil Friend 47:37
I think, I think to Simon that we've I do remember that distinction being made. Before the 95 Act came over here and I know Katie's the legislation in the United States came first. The distinction was made between impairment and disability, wasn't it? That was the distinction. Now what you find, particularly in the UK, and I'm sure Catherine agrees with this, is that we always say now always long term health condition or disability. Although there's a distinction, we are still part of the same issue. So laws and regulations. And so now I have to think very carefully about people with long term health conditions who may not be covered necessarily by the stricter Disability Discrimination Act kind of things. But we're really nearly out of time.
Simon Minty 48:27
Yeah. And I'm sure you're all sitting there going, well hold up, I got another 10 points, and I leave it. I don't mind that we could perhaps nip round. If you've got a final point, what I'd ask is that they're succinct as much as you can. So if you've got one thing that you really want to mention that we haven't done ihere's your chance. I mean, Katie, anything from your side?
Katie Elizabeth 48:48
Um, I do think that you made a good point that we have this, we all made the point about the social bias, but my biggest barrier is always going to be myself. And that that is going to be the biggest hurdle. What is the biggest hurdle I will always face because I battle with Well, if I just pushed myself, maybe I'll be okay. And I am, for whatever reason, always going to think that that if I push this a little harder, I'm going to be able to out think everything that is in the way.
Simon Minty 49:30
I know Phil will say that's the pressure of society on you to do that. And we all do it. I totally get it. It is also the flip side of the person who says I'm going to use a stick. I'm going to use a wheelchair I've given in and I disagree with because I Rosie Jones a great comedian is in Tokyo, she started using a wheelchair for the first time. She said I've been proud all my life, never to use it. And I thought he's given it and then she suddenly went, Oh my goodness. It's so much better to use a chair I totally get you that. I don't know.
Phil Friend 50:04
What about. I just remember somebody once saying to me, Katie, and I'll offer it to you for what it's worth. I am good enough. I am good enough. And, and you are so but I get that inner voice. Oh, if only I find just push that a bit harder maybe Yeah. Okay. Catherine, what's your final message to the nation?
Simon Minty 50:30
Nations?
Phil Friend 50:32
Oh, sorry, nations? Yes, I beg your pardon our American friends,
Catherine Hale 50:36
I suppose my kind of final question I want to say is that the social model is absolutely relevant to chronic illness. But what we need to make it work we need to kind of in, we need more understanding the kind of oppression and the kind of barriers that people with chronic illness face, so that we know how to you know, because they're not necessarily the same for all different kinds of impairment. So yeah, just like just like we've done today more understanding of the kinds of issues with disbelief, and, and fluctuation and everything that we've talked about. So I just want to say thank you for having this show. Because you've really helped to, I think we've really helped to air some of those issues and broaden the understanding
Phil Friend 51:23
Good stuff. David thought final thoughts succinct, final thought from you? That's a terrible word.
David Ager 51:31
I suppose like we say, energy limiting conditions. And I think I understand why we use these conditions. And I don't know, I admit, I don't know what the right word is. But I feel that sometimes energy limiting can, ironically limit what these conditions are for people. Because it's not just it's, it's pain, it's not able to think clearly it's balance it's sleep problems. I suppose maybe the other point is similar to that as for, I suppose, some people acquire a disability from maybe an illness or a car accident, and it's very physical it's obvious maybe lost a limb, something like that. Although our understanding of these conditions is limited, I feel that if we use most of these conditions will start with, well, COVID is prime example with along with cold or flu, or some other condition, or brain injury. And I think maybe, to see it almost like an injury to the nervous system or immune system. This, because it's internal, we maybe not see it as much, but it's kind of a same sort of,
Simon Minty 52:51
Yeah, I can see.
Phil Friend 52:52
Yeah, yes, yeah, I'm
David Ager 52:53
trying to say, I probably wording it badly.
Simon Minty 52:57
And I totally I think there was a little revelation moment of mean, Phil, because Phil mentioned this word energy limiting. And we suddenly thought, Oh, we can put that in the impairment term. Now we can answer and it was it was understanding for other people not, I totally may not be better understanding of your own condition, but it allowed other people to go, oh, I've got my head around it now. And then, you know, that's good and bad.
Phil Friend 53:21
I suppose you could, I mean, without prolonging the conversation, because we've got to stop. But if I just say polio to you, you get some kind of image you don't quite know. But every person who's had polio is different. And they will experience it differently. And these than the effects will be different. So it's a it's a global term for paralysis of muscles, but it doesn't really tell a picture. What I get with the energy limiting is that it because of all the other things you're managing the pain, the sleep, all of that. It limits your energy, that's where you end up. It's that kind of global position that you find yourselves in. But so many things are playing tunes in your bodies and heads. That that's the only way to describe the final thing of it. So yeah, I found this really, really helpful.
Simon Minty 54:09
Talking of final things Catherine put a hand Yeah, sorry.
Catherine Hale 54:12
Finally, it's so good to hear you say that Phil because that's exactly how we've thought of the term energy impairment energy limiting conditions is absolutely not to reduce it or to you know, fatigue or whatever. Because like David said, there are so many aspects involved and in fact, we want to we need to do training and the, you know, the core features of energy limiting chronic illness, our energy impairment, pay back the idea of post it, you know, kind of having consequences for everything you do cognitive fatigue and dysfunction, and the fluctuating the fluctuation so we absolutely do need more education and training in energy limiting chronic illness. It's not absolutely not just about fatigue, but I'm so pleased that it it was a lightbulb moment for you as a way of kind of understanding chronic illnesses as a type of impairment because that's what We need to do yeah thank you.
Phil Friend 55:02
Okay
Simon Minty 55:03
I need to say thank you so much at various points I've wanted to speak to all three of you in different because it's been bubbling in my head for so long and I'm so glad that we've got you here what is obviously clear is there's no way in 45 or 50 minutes we can cover this particularly because the three of you have got so much information and knowledge and sort of can be so articulate about the issue so I'm really sorry we've not been able to spend more time on it but it doesn't mean to say we can't do it again. If you are listening. We will have links to all these three fabulous people and you can find them on social media and find out their work and hear more of what they talk about. Although David's looking at me going now I'm gonna go a bit quiet now. So at least Catherine and Katie will be around but Phil
Phil Friend 55:52
I just wanted to say how much I've enjoyed the conversation and as I said a minute or two ago how much help it's given me in getting my head a bit straighter on these issues. I think I've understood some of it but not all of it by any means and Simon's right we need a much longer discussion.
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Phil Friend 56:17
What a show that was fabulous guests really interesting subject very complex, as we knew it would be Simon. Fabulous and was so much material. It's a shame we haven't been able to include it in the show. But there we go.
Simon Minty 56:33
It was always going to be that way and we've had a couple with ableism and then this one but I'm pleased we're talking about them because they've been bouncing around in my mind as well as everybody elses and I did say towards the end that bit about those who may not agree with everything you know, we're we're open we like the debate and the conversation. I suppose I leant into people who I've come across and that's what you sometimes do. But they were all great and I yeah, it's it's lovely when you we You and I are getting new different thoughts and feelings and that's what's and we're being educated essentially by some very smart people.
Phil Friend 57:17
And none of it would have happened without zoom. Because we wouldn't have been able to interview people so easily would we particularly those with energy limiting issues,
Simon Minty 57:26
The difference I'd have invited them all to come and have lunch which is what we did in the old days when they all came and I mean
Phil Friend 57:33
From the US?
Simon Minty 57:34
Yeah, our budget doesn't quite stretch I got a few air miles No, but I think it would have been difficult but there's a perfect acceptance I think we would have worked at like this I think we would because we've done it before but you're right it is so natural. And this is normal. This is the someone should use the word new normal. Have you ever heard
Phil Friend 57:54
new normal? Yeah, the new normal? Yeah, let's go to the new normal. Well, okay, so if anyone wants to get in touch with us, we've got the usual things have we not which is mintyandfriend@gmail.com
Simon Minty 58:06
and Facebook, Twitter, and LinkedIn as well as Beacon and I got to two clicks on our Beacon site the other day, so that's flying.
Phil Friend 58:19
Alright, well take it easy, and we'll see you all soon.
Simon Minty 58:22
Thank you for listening.
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