Ep.1 Transcript

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[00:00:00] Poppy: Drop the euphemisms. Please call me disabled. A new podcast from me, Poppy Field.

[00:00:21] I know how complicated our relationship with disability can be. Since my childhood, I've had a rollercoaster of experiences with my disabled identity. Living with chronic illness, chronic pain, neurodivergency, and in particular inaccessibility. In this series, I'm chatting with various guests about their journey of coming to identify as disabled and all the amazing and difficult in-betweens that come with it.

[00:00:52] In this episode, my very first, I am so excited to have Jameisha Prescod. [00:01:00] Jameisha is an artist, filmmaker, producer, and writer from South London. They started the Instagram page. You look okay to me. Which has grown into a vital online space for chronic illness. It's educated and empowered, many people, me included.

[00:01:20] We'll be sharing their story and we'll discuss what we want the future to look like for everybody. Temporary, non-disabled and disabled, you included.

[00:01:34] Hi Jameisha

[00:01:34] Jameisha: Hello. Thanks for having me.

[00:01:36] Poppy: So love to meet you Let's jump into your upbringing. Did you grow up with exposure to disabled people and what disabled people did you know of? 

[00:01:47] Jameisha: I did, so I did grow up with an exposure to disabled people. I kind of don't know a life without. Being close to disabled people.

[00:01:55] My cousin, uh, he's no longer with us. Um, he was like a, a year [00:02:00] and a half younger than me and he was autistic. And so my whole life it was just knowing that disabled people are awesome and cool and there's nuance to it. And having that upbringing being so close to him cuz we were more raised like siblings.

[00:02:15] He was my only first cousin. Yeah. That was my early exposure and actually because of him when he used to have, um, like they used to do like disabled children's events. So sometimes if there's like a fun fair, there's oftentimes a day for disabled children. Specifically, I would go with my aunt and with him, and then he would often go on trips and he would make friends that were also disabled.

[00:02:34] So I was just often having experiences with different kids with different disabilities growing up before I even realized that I was disabled later on. So disability was just normal for me. 

[00:02:46] Poppy: I love that so much. I unfortunately did not have that experience being neurodivergent and chronically ill like my whole life.

[00:02:51] And it's such a wonderful contrast of growing up with it being normal and growing up with that exposure. I'm a little bit envious, but also just [00:03:00] so happy for you cuz it's what everyone deserves. 

[00:03:02] Jameisha: I am so grateful for it. And I think where it got tricky is realizing, and this is more so when you start going to school, that it's not normal.

[00:03:08] For other people and that's where like the frustration obviously comes into play because people didn't get him and obviously us being so close in age, he was in like the school year below me and we often went to the same school. It was quite frustrating cuz it's usually, it was usually me having to like shout people, like do certain things on his behalf because it was irritating cuz they just didn't get it.

[00:03:28] And you're just trying to explain like he sees things differently or he needs this, uh, access kind, or, I wasn't even using those words, but, you know, in, you know, for lack of better terms, I was kind of trying to advocate on his behalf because sometimes people just don't, well, we know this, people don't listen to disabled people themselves.

[00:03:42] And so at the time I'm trying to be this like big cousin to shout at everybody, but that's where things kind of got frustrating is like, oh wow, you don't. How comes why? It was so weird to me.

[00:03:54] Poppy: So I'm guessing that's kind of the first time you realize like the world is not built for disabled people of mind, like this is [00:04:00] built in non-disabled image.

[00:04:01] Jameisha: A hundred percent.

Poppy: I think it's amazing that even being a little kid and not maybe having the vocabulary and the education behind it, you were still able to advocate. That's pretty impressive because as a kid I was bad at sticking up myself.

[00:04:14] Jameisha: Don't get me wrong. I was bad of sticking up for myself. But him, it's like, no, you don't talk to him like that.

[00:04:18] Poppy: It's always different when it's someone else. I dunno what it is. It's like this adrenaline rush. It's like, oh, that's it. No, we’re not having that.

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[00:04:34] I was wondering, leading on from this, When did you first began to call yourself disabled then? Because you've had this exposure to disability and I'm wondering what that journey and that link is. 

[00:04:46] Jameisha: I would say it when I started calling myself disabled, it probably was, it's hard to remember the exact year, and I think it probably was around 2017, 2018, something like that, was when I actually started calling myself disabled, because [00:05:00] prior to, obviously, you know, my cousin being disabled, I wasn't diagnosed with a chronic illness.

[00:05:03] I wasn't actually ill at that point, so, I moved around the world as a non-disabled person. I mean, I should add that I'm currently in the diagnosis process to see if I'm neurodivergent. So plot twist could be that I was disabled the whole time, but , the jury's still out on that. So I'm still, I have, I'm still not quite sure, but, uh, in response to, I guess specifically what I'm been diagnosed with, yeah, I got diagnosed in 2014.

[00:05:27] And then most of that time I was at uni and I was just figuring out what it meant to have lupus, which is my condition. And then as I started learning more and, and it was really when I started doing my page, you look okay to me. And I started talking to other disabled people, disabled people with chronic illnesses and without, um, I don't know, I started to get a bit more political and understanding the politic system of disability.

[00:05:49] That's when I kind of started realizing. that when I wasn't calling myself disabled, it was partly because I still had this concept of, oh, I'm chronically ill and it's a very, um, on and off [00:06:00] illness. So I don't feel like it's right for me to call myself disabled because there are people that are quote unquote worse than I am or whatever that means.

[00:06:09] Uh, that was a very ableist way of looking at it, but that's how I, I saw it at that time. And then, I don't know, with time I realized that the identity is this really empowering. and it empowered me so much cuz then once I started, uh, embracing it, um, and realized that yes, I have a disability because the world is not accessible for me.

[00:06:28] There's like, it's not actually about my illness, it's about the barriers that are in place in society. That stopped me from being able to like thrived in certain places. When I started realizing that, that was when like my life kind of changed and I was actually allowing myself to have access needs, like all of these things sort of came after that.

[00:06:44] The catalyst, the trigger point was when I got a freedom pass.

[00:06:48] Poppy: A Freedom Pass is a special bus pass, primarily based in London that provides free travel for disabled and elderly people. (Ref from Freedom Pass)

[00:06:55] Jameisha: Like my auntie, and this. You know, after my cousin passed away, she said to me [00:07:00] like, oh, I dunno why. I think his passing almost triggered her to realize that there was all of these things that I was entitled to.

[00:07:05] And she was like, how come you don't have a freedom pass? I was like, oh, I'm not disabled. She's like, yeah, you are. I'm like, oh, all right. Okay. So it kind of was triggered from there and then, yeah. Um, it was an empowering moment, actually. I kind of felt scared even saying it. I kind of felt like I was gonna get told off, but it truly was an amazing thing to do because I realized there's no shame in it.

[00:07:25] And it's not like a, it's actually not necessarily a restrictive term. It's quite freeing actually.

[00:07:32] Poppy: I think it's really interesting how it took that almost external validation or someone like telling you like, no, I think you are disabled. Cause I know how, how long it takes to get those passes. Like my blue badge, for example, took such a long time to get, it's almost like, wait, I'm allowed this

[00:07:48] Like, okay, I, I guess I can call myself disabled. Yeah. I mean, that is a great little segue into like Access tools because Freedom Pass obviously being a massive access [00:08:00] tool for getting out in the world safely. Yeah. Did that help you explore any other things that you might be entitled to?

[00:08:06] Jameisha: yeah. Well, the Freedom Pass came actually after pip.

[00:08:12] Poppy: PIP or personal independence payment is a welfare entitlement in the United Kingdom that is intended to help working age adults with the extra costs of living with a long-term health condition or a disability. (Ref from PIP)

[00:08:25] Jameisha: God knows, we know how difficult it's to get pip. When I got entitled to that, I still didn't call myself disabled.

[00:08:30] I was just like, oh, well, it's for people with long-term illnesses as well, so that it was more the freedom pass afterwards with the pip after that, then it made me realize, I once embracing this term, disabled. I dunno why. It just opened up a world of possibilities of feeling entitled and feeling okay to sit down, uh, when I need to, feeling entitled to have a walking stick when I need to.

[00:08:52] This is still an ongoing process, so even like. Picking access tools and access tools aren't even always physical. You know, sometimes it's actually writing an [00:09:00] amazing artist called Bella Milroy, who was the person that triggered this, but they have an email signature that says, due to the fluctuate in nature of my disability, it may take me some extra time to respond to your emails.

[00:09:09] That's an access tool. It's not necessarily a physical tool, but it's there. Even these small things. It took a while to make me realize that I couldn't get these. And it's kind of like as life goes by, these little nuggets sort of come and I'm like, oh wow, this is making my life better and I'm allowed to do this.

[00:09:23] So it's been wild. Like I would say my current barrier I'm figuring out is, uh, using wheelchairs at art galleries. That's my newest unlocking of access. So my next level has been, um, realizing that I really struggle in galleries and I tend to go home before I'm ready, before I finish seeing the art because I'm too tired and I get really frustrated and I just felt like I shouldn't be asking for the wheelchair and I don't want to be seen wearing it because, or using it because people are gonna see me get up afterwards and they're gonna think, oh, she's such a liar, blah, blah, blah.

[00:09:53] But with time realized, it's just denying myself something that can help me thrive. So, uh

[00:09:59] Poppy: obviously I [00:10:00] relate so hard, but. Going out into the world using a wheelchair and going to like events and places, but then not throughout your daily life. It's really hard to like overcome that like stigma and that bias of like, but I'm only using it for like going to a theme parks.

[00:10:14] I dunno if you have any advice for anyone who's still trying to, even, me? 

[00:10:17] Jameisha: I would say the first step is just try it. For stuff like that where it's like, you know, it's often available at, you know, the venue. The first thing that I had to kind of like l make it really logical in my brain, so I for my first barrier was, well, other people might need it more than me.

[00:10:34] Uh, number one, they usually have quite a lot. The second thing is for people that use wheelchairs often more than you, it is likely that they've come with their own . So you don't have to worry on that side. Um, I had to really like lay out like that. And then the third thing I would say is like, if it helps, your first time could be with someone else.

[00:10:52] because I, it makes it a lot easier when it's not just you. So I went with my partner. The first time I used it was with my partner, and so I asked him, um, is it all right if you can [00:11:00] help me navigate the gallery? He said, yeah. And he asked for it on my behalf. I was so scared. I was like, oh my God, I don't wanna ask.

[00:11:06] They're gonna look at me funny. He didn't care. Yeah. We need a wheelchair. Yeah. Like, well,

Poppy: So matter of fact

Jameisha: he just made it so much easier for me and he kind of just was advocating on my behalf and then ever since then, I didn't have to have him do that the second time. All that to say, yeah, like your first time, maybe try bringing someone with you.

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[00:11:36] Poppy: So I guess we could talk about like what your relationship with your disabled identity is now, coming from all that perspective and that growth. What does it look like?

[00:11:46] Jameisha: It’s so interesting you bring that up because it's something that I've been sort of sitting with for the last couple of weeks because I've been on and off quite ill over the last couple weeks, while also having, uh, projects are time sensitive.

[00:11:56] So, you know, earlier I mentioned that [00:12:00] actually being able to call myself disabled was really freeing. It was empowering. So that is still true, but I have sometimes this split thing, especially now where, to be disabled is empowering, like as an identity as this community that I've been able to even be in touch with, like cuz even embracing the identity has enabled me community, but it just feels really like powerful to have that.

[00:12:21] At the same time, there's a really tricky relationship. With identifying as disabled when you're chronically ill because your disability is linked to symptoms that are really hard and painful and symptoms that I actually don't want. So then I sat and realized it's not that I don't want to be disabled because I actually think it's an amazing identity to have, and I think we're so like, we're often very political and very mouthy and very, not all of us, we're all different.

[00:12:46] Don't get me wrong. We're like, a lot of the people I talk to, like, I don't know. We've become like just this cool batch of people because. Sometimes adversity or like being marginalized sometimes like kind of pushes you into like certain traits because you have to survive. So I'm so proud of [00:13:00] that when it comes to the disabled community.

[00:13:02] At the same time though, there is this, these negative feelings that come with, not necessarily with being disabled, but with what has made me disabled because it's hard. Lupus is really shit. Like it's really, really hard. Um, and. When I'm having a good day, obviously, I'm like, yeah, man, I'm a disabled person.

[00:13:21] On the bad days. I'm like, yeah, I'm a disabled person, but this is, this is really hard. This sucks. Like, and I'm sure this also exists for non-chronically ill people too, but I, I'm just, I'm mainly speaking from this experience, but I. When my joints are hurting, when I had this plan for the week and I wanted to do something, I wanted to go to the gym, and now the gym has knocked me out for two weeks.

[00:13:40] Or, uh, someone's asking me to finish something and I really wanna finish it, and they're not being horrible. It's me. I'm having this internalized problem, and now my fatigue has impeded that. That's where I really struggle with the identity of it, because it's not disabled. That's shameful, per se. It's just, it's so hard to have this thing.

[00:13:58] And this is what's the kind of, [00:14:00] um, informed my disabled identity. And it's sometimes like I, then I feel guilt cuz then I'm like, oh, like are you feeling guilty for feeling this way? If that makes sense. And so also, um, it's making me reflect on the space also that chronically ill people have in the disabled community as well.

[00:14:16] Uh, some people are chronically ill from birth and like if you have sickle cell for example. But some people aren't. I, I wasn't. And so also it's about reflecting on my disabled identity and. When you've come into disability later on as opposed to being born into it, sometimes you have, I at least can speak for myself.

[00:14:34] Some of these internalized ableist kind of ideas of my disabled identities is often in contrast to an experience that I've had before and it's often measured by what I used to be able to do. And like not everyone has that. So I don't know at the moment I'm in like a complicated like vibe of, of my disabled identity because it's really trying to understand also my space in the disabled community, my privileges, but also some of the, um, the hardships, like being someone that doesn't read as [00:15:00] disabled immediately is a privilege.

[00:15:02] And it's also a difficulty as well because then you obviously just have stigma based on people not believing you. But then you also have the privilege of, I don't have people praying over me in the street like some of my mates, seriously. Like that does happen. Like, there's a bit of like acknowledging my privilege, but there's also bits of like, not wanting to have lupus, but not necessarily not wanting to be disabled.

[00:15:21] Cuz I think it's nothing to be ashamed of. But I also don't want lupus cuz it's, it's, it, it just sucks. It just really sucks. 

[00:15:27] Poppy: I think it's really interesting that you bring up the space that the disabled community has with chronic illness. Um, cause I think going back, we’re both of similar ages, I think, and we both [00:15:37] have this experience of being chronically ill first and then slowly finding the disabled community. From what I've read in the past, I very much think that chronic illness has never really been particularly part of the disabled community in terms of advocacy. It's always sort of been secondary in recent years perhaps there's obviously been a lot, a lot more thank goodness, for, for better or [00:16:00] for worse reasons, but I was wondering how that makes you feel, like, what is the difference between that self, your chronically ill self and the self now who can identify as being disabled?

[00:16:09] Jameisha: I mean, when I was chronically ill and not disabled, obviously I'm both, but prior to that, that, that was me othering myself and, and I, I've been othered too, so it's not even like it was just me, but on a personal level, like I was kind of separating myself because [00:16:26] there was some ableism there cuz I was looking at other disabled people and I was kind of like, well, I'm not, I can do more than them. So I'm not a wheelchair user and I'm not this, I'm not that. So therefore I'm not disabled. And also there was a part of me hoping that I wasn't gonna be chronically ill forever.

[00:16:42] If I just eat better and train harder, I'm still gonna have lupus, but I'm gonna be the type of person that can have lupus that basically, uh, passes as, uh, someone that doesn't. Also, it was just the fact that like, kind of like you said, being, having a chronic illness in a long-term condition. I think it's a newer concept of it being under the [00:17:00] same conversation as disability.

[00:17:01] And I think it's because of, uh, now there are more people kind of having these conversations and also, um, critically unpacking what disability means and, you know, the conversation about the whole, um, social model versus medical model, blah, blah, blah. 

[00:17:13] Poppy: The social model of disability states that disability is created by the way society is organized and designed.

[00:17:20] This is widely followed by many disabled advocates and the disabled community. The medical model defines disability by what a disabled person lacks in physical and productive ability. There is a lot more depth to both these models, so I highly recommend researching if you wish to know more

[00:17:35] Jameisha: All of those conversations over the last 10 to 12 years has changed the way we speak about disability.

[00:17:43] So I think with those conversations being had, that's helped me obviously also like have a different perspective over it. Number one, realizing that, um, disability is so diverse and it's not based on who is quote unquote worse off than others. Like it's not measured by that. It's very [00:18:00] individual and it depends.

[00:18:01] I mean, a friend of mine, for example, she had a polio. So, uh, she, uh, uses mobility aids all the time. However, she doesn't deal with fatigue. So she has the visible side of having a disability in a sense where people see her mobility aids, they see the way she moves around in society when she goes to work. There's a lot of ableism there and obviously like, you know, she needs her access needs met.

[00:18:24] But at the same time when we were talking, she was like, well, you still have access needs. This is obviously in my early days, she's like, you still have access needs. I don't need to tell them about some days I'm not gonna be able to come to work because I'm too tired or too fatigue to get out of the bed.

[00:18:38] I don't deal with that. We're both disabled. We have different aspects of it. There are some people that are gonna deal with this part, some people that don't. It's kind of like, um, Uh, someone was explaining to me the best way to envision the autistic spectrum is not a slider that goes from left to right.

[00:18:53] It's kind of like if you're in a radio booth or like in a music production studio, there's different sliders that go up and down. Some people's [00:19:00] sliders will be up for some things and some people's sliders will be down for other things. I think that can extend to disability overall. That's when I kind of came into like a

[00:19:08] More nuanced understanding of disability, which obviously in turn helped me identify as disabled.

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[00:19:20] Poppy: I dunno if you also experienced this. But coming to terms with being disabled, involved, a lot of dismantling capitalism and becoming more anti-capitalist. And I don't know how you feel about that.

[00:19:32] Jameisha: Yeah, I mean, that's basically it. Like I, I, I wasn't, wasn't really that versed on these conversations about capitalism at first and then coming into my disabled identity.

[00:19:45] Um, also as a black disabled person as well, where there's, uh, intersections. That's when I realized, I was like, this is not set up for, well, really, it's not really set up for 99% of people in the world, but you know, with the disability being part of [00:20:00] it as well, the value that we put on ourselves is mainly about what we can do.

[00:20:04] But what we can do is also based on the limitations or the, the barriers that you've put in place, though not, it's not because of. At first, the way I was viewing it was no, the barriers need to be broken down so I can be productive. So I kind of was also thinking about like disability justice as like this thing that allows me to be productive and still feed into capitalism when the system itself is actually just the problem overall for most of us anyway.

[00:20:27] Yes. Obviously if you wanna work and do whatever you wanna do, yeah. Like that's your choice, whatever. But I was realizing that I was just measuring it based on, how much I could contribute, how much I can make for some company or some system. With time, you realize, wait, this is bullshit. Actually it's not working.

[00:20:46] And then you've just become more and more anti-capitalist as the days go by.

[00:20:50] Poppy: nothing radicalizes you more than coming into a disabled identity, I will admit.

[00:20:57] Jameisha: Yeah [00:21:00] 

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[00:21:08] Poppy: My word advice, so for listeners is definitely to rest. I think the coolest thing about the disabled community is that when you are taking your respite, there's always other people to fill in the advocacy gap you leave. I don't know if that's solid advice.

Jameisha: Yeah.

Poppy: You take care of yourself to be able to be a good advocate and learn all the time.

[00:21:28] Jameisha: for sure. Rest periods are actually needed.

[00:21:30] Poppy: Rest is a massive part of advocacy and I think that goes unsaid a lot and being chronically and we need a lot more of it than usual. 

[00:21:38] Jameisha: Rest is so political and I didn't think it was, but whereas we're having this conversation about productivity and capitalism, resting genuinely is a form of, of protest.

[00:21:47] Which you didn't think it, it sounds so weird, right? You're like, I'm really doing anything. Really. I'm, I'm like, you are taking the choice to actually do it without shame. It is so hard. I still can't do it. I still struggle with it to this day that shame is built in because especially [00:22:00] with us, we feel like we've gotta overperform to prove our worth.

[00:22:03] Like I want them to see I'm so phenomenal so that they know I'm, I'm not gonna let the side down. I'm not gonna make life harder for everybody else. We kind of feel like we have to be the, you know, as we said earlier, the good disabled person, the one that is all right for the, for the non-disabled, you know, like that doesn't make life too hard for them to actually rest and to make that decision and actually to say, Okay, well fuck that.

[00:22:25] I'm gonna actually do what my body needs and take a moment and also take a moment to like, while resting as well. Listen rest and sort of like take that step back. It's, it's actually more political than people realize, and it's not even just for disabled people, it's for non-disabled people too. But yeah, largely for non-disabled people.

[00:22:42] Because they haven't faced those barriers yet. They often don't have to reflect on that conversation yet. It kind of takes them a bit longer to get there. I feel like, in my opinion. 

[00:22:50] Poppy: That's a really good point. There's less sort of like checkpoints like in a game, that you need to do if you are non-disabled.

[00:22:59] Yeah, that's [00:23:00] really insightful. Thank you for sharing.

[00:23:02] Jameisha: But like, just so lastly like disability rights is rights for all of us. So, you know, if, if, if there is, uh, justice for us. It's actually justice for, for, for non-disabled people too. They don't realize it though, but it's actually justice for them as well because largely the world is not necessarily built for a lot of people, but because they can like, pass under the, the radar of capitalism to a degree.

[00:23:24] Like they kind of don't realize that. I mean, I went to a talk a while ago and someone was like, you know, audiobooks were actually an accessibility sort of function, but actually how many of us listen to audiobook that aren't disabled? You know, and that's for many instances

[00:23:38] Poppy: Non-disabled people have access, needs too, it's just that they're, you know, catered to quicker and easier, such as glasses and

[00:23:47] Lifts and elevators and drop curb effect basically is what, it's what it's called in the disabled community where the drop curb was put in for wheelchair users, but it also benefits people who use prams. And I did my, uh, [00:24:00] degree in adaptive fashion and I did a big part of my dissertation on like glasses and using them as an like example for setting the standard of what accessibility and integrating it into society, but mm-hmm, there was obviously was stigma around glasses before it became a thing.

[00:24:15] I feel like that's an important to mention cause I feel like most things are met with some sort of like, uh, bad press. I can't think of a better word to describe it. Sure. Stigma and bias before it slowly in like becomes part of community. Don't lose hope on things that haven't quite blended in yet, I guess is what I'm trying to say.

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[00:24:43] In five years time. What do you want your relationship with your disabled identity to look like? 

[00:24:48] Jameisha: Um, in five years time? I think I want there to be less shame in it. I think I really struggle with shame in many different facets of my life, not just my disability. It's one of my biggest things I'm [00:25:00] working on, so I just want there to be less shame and less apologies for it.

[00:25:05] I feel like I'm still a bit apologetic. You know, sometimes things are late because of my disability, but I, I struggle with it. Like, I just feel like I always have to apologize and I always have to, um, get ahead of it and or sometimes force myself to, to do things. And I thought I was past that, but I'm, I'm really not.

[00:25:21] I'm starting to learn. So I just hope in five years time there's just less shame, more advocating for myself about feeling bad about it. And also just hoping that I can be a good listener in my disabled identity too, as well. Be a better listener for other disabled people. Pass the mic when needed.

[00:25:37] Knowing when to pass the mic, when to share the platform, and amplify other voices in the community. I think that's what I'd, I'd, I'd like to see in five years time. 

[00:25:45] Poppy: I think that's very helpful as well. For many, maybe like seasoned disabled people, I, I was wondering whether shame. The shame I also experienced, despite having no one now really giving me crap [00:26:00] for it, it's still there.

[00:26:01] Jameisha: Yeah.

Poppy: And I don't know whether, if it's something you, if it's something you experienced early into your chronic illness, was there pushback from people that you're now like harboring that shame? Or was it just your brain being your brain? Cause I know what brains can be like.

[00:26:17] Jameisha: I think overall shame has just been something that's been a part of me for a really long time, I think even before I had my chronic illness.

[00:26:24] And so it makes sense why it would be attached to that as well. However, yes, I think early on, um, especially, you know, with my family, especially in, um, not every like black community, I can't speak for, there's, there's so many different ethnicities within the black community, so there's no one experience.

[00:26:41] But I think within my particular family, I'm, I'm of Jamaican Caribbean heritage, like I don't think people want you to feel shame on purpose, but there is sometimes this underlying this when you have a condition. Yeah, so when I first was diagnosed, for sure, like, you know, I love my mom and obviously this was coming from a place of like goodness, but there was [00:27:00] kind of this thing in the early days where she'd be like, oh, um, if I'm having a fatigue episode, she'd come in and open the curtains and be like, you know, sometimes she's getting up.

[00:27:08] That's what you just need to do. And she wasn't quite understanding at that stage that I just can't, um, and it was making me feel so bad cause I was just like, oh, why can't I do it? She's saying this is the thing, I just need some fresh air. And actually, and she knows I'm diagnosed. She was there when I, when I, when I got diagnosed, she was largely the reason why the diagnosis came cause she was my advocate.

[00:27:26] But she didn't realize that there was a kind of a shame she was perpetuating. And with time, she's kind of learned actually that that's not helpful. There's also this idea of, um, I'm in this middle ground of being so accepting of, uh, modern, uh, pharmaceuticals, um, that have, that are keeping me alive and allowing me to thrive.

[00:27:45] But I'm also, you know, my Jamaican heritage is very herbal. Um, and I love my herbs as well, right? And so there's also this shame of like, oh, you take that medication, you know that medication. Ugh, you should just go this, you should go vegan, or you should just da da da, da da da. It's [00:28:00] always something I'm doing wrong, and that adds to shame as well.

[00:28:03] You know, like appreciate what they're saying, but also tell them, listen, I really appre, I know where it's coming from, but this is not helping me and it's making me feel really bad and it's not helping. This kind of concept I've got in myself as a disabled person. 

[00:28:15] Poppy: Well, thank you for sharing that. Cause it's like, that must be so painful and personal.

[00:28:19] And I, I was wondering if there was a place where you finally realized that you are allowed to sort of try and have peace in your diagnosis and sort of stop looking for things even though sort of, maybe loved ones are still looking for things for you as well, because, you know, it's not coming from malicious intent, but at the same time, like you said, it's, it's so much love, but they just don't realize

[00:28:42] But when was that place for you when you realized, I just need to make peace with this, if you've ever had it?

[00:28:46] Jameisha: I dunno if I've reached it yet. I think that's a, that's something I'm trying to get to. So it's a work in progress. I think actually, um, of self-reflection of, um, reading more things from other disabled [00:29:00] people.

[00:29:00] Sometimes the written word of others that already exists sometimes unlock something that you didn't, you couldn't explain. So it's, I'm still in search of that. I think actually

[00:29:09] Poppy: I appreciate the honesty. I think sometimes people like to put things in a little bow and just be like, no, like I've moved on.

[00:29:16] Um, so I appreciate that. Yeah. Yeah. So, so insightful but also mentioning the fact that you said to amplify to continue amplifying but also knowing when to amplify disabled people. I just want to touch on that cause it's, I think very powerful. There's perhaps the more palatable disabled people, and I think I'd maybe myself fall into that category.

[00:29:36] Jameisha: Sure.

Poppy: Knowing when to put your ego down and know, I don't know enough about this to speak on, this is just one of the most important things you could possibly do in advocacy.

[00:29:52] What would your message and takeaways be for disabled listeners, but also non-disabled listeners who want to learn more?

[00:29:58] Jameisha: [00:30:00] So a message for disabled listeners would be, I hope like me, we continue to like unpack the shame. There's obviously we most, some people are already aware there's no shame in being disabled, but I hope that like we can continue to lose that.

[00:30:12] I think also understanding that as a community we need to like talk and listen as we already do, but more so and have some level of intersectionality and just figure out okay, like. When's the right time to speak and when's the right time to listen? Um, I know people already do that, but I just more so my message to the disabled community is just encouraging that.

[00:30:31] Um, and also, yeah, uh, resting because it is hard out here to be disabled of any kind. It is tiring, the non-disabled, sometimes maybe they don't realize it. Maybe they do. Sometimes the world can be really tricky for us and really shitty. Um, so the rest is really important as well. I think for non-disabled listeners, listen a lot more.

[00:30:52] I mean, if you're here at this point with the podcast, well done, you've been listening. Um, but yeah, like just listen to disabled people more, [00:31:00] Read more. From disabled people in, immerse yourself in disabled voices. Don't do that kind of knee-jerk thing of trying to kind of ignore and silence or make us invisible, cuz that often is what happens.

[00:31:11] We are, are just as important as you are. We're in fact one fifth of the world's population, whether you believe that or not. So, uh, listen a lot more and do and act on it like it's all right listening, but actually we need your ally. To kind of push forward some of these changes that we need for to, to have access, needs met, to break down barriers.

[00:31:30] We need that allyship, we need you to actually be active in doing that. And also just try to move away from the knee jerk reaction of making assumptions. Um, like for example, if you have that knee-jerk reaction about that person that took the lift one floor. Tap your hand or something and practice the, I don't know what that person has going on.

[00:31:47] Let me keep my mouth shut. Like, let me not make these judgments and assumptions. Um, for sure. Uh, and I don't mean this to sound condescending, so I apologize if it comes across as such, but that's, that's, that's it really. It's just, um, come from a place of [00:32:00] learning and, and, and work with us. Come on now.

[00:32:02] Come on now.

[00:32:06] Poppy: No, I like it. It's like mind your business, but also be part of our community more. As much as you can. Be a good ally. Yeah, basically one day you might not be an ally. You might be part of us, but  for now

[00:32:16] Jameisha: that is very true. life comes at you fast, as they say. So you know

Poppy: I appreciate your time.

Jameisha: Thank you for having me.

[00:32:30] Poppy: Thank you for listening. Do check out you look okay to me and Jameisha's work. Keep up to date with the next episode of Call Me Disabled. By following our Instagram at Call Me Disabled Pod our Twitter at Call Me Disabled and find us on Call Me Disabled.com. Produced by me Poppy Field and Eliza Lomas Sound Design by Elle Chant.

[00:32:56] Illustration by Hate Garip, a collaboration with [00:33:00] Acast Amplifier, CC Co and Crack Magazine.