My approach to friendships as a disabled person (Feeling like a burden)

Transcript:

Somebody asked me to talk about how I approach friendships as a disabled person. So that's what I'm going to do and the essence of it is that I approach them as if I am not a burden, which sounds easy, but it's not for me and I know it's not easy for a lot of other disabled people. So probably, I'll only have time today to just talk about one practical application of that approach. And the practical application is basically I Spend more time in social situations where my needs are not approached as if they are a burden or as if they are a problem to be solved I suppose it is a better way of putting it that's going to make more sense in the context of my life. So I'll explain a little bit about my disability, which basically did not become particularly socially limiting until I turned about 20, which meant that all of the Social groups that I belonged to up to that point had been built on the premise that if I was in pain or if I was really, really exhausted. I would just pretend I wasn't so that I could continue doing the things that other people wanted to do. So when my disability did become more socially limiting, we had no sort of formula for those kinds of situations. And you know, my friends were lovely sort of one on one and in small groups they were very happy to make adaptations because you know they cared about me but the more sort of ritualized a situation was; like a birthday or the more people that were involved Perhaps Friends of Friends, the more my need for adaptions became sort of “difficult” so that felt like shit. It felt like I was not liked that I was sort of causing problems for other people. Like I was a burden. And this was regardless of how my friends wanted me to feel. Of course, I'm sure they didn't want me to feel like a burden, but that's how it goes in that kind of situation. So at that time, I started to seek out other communities. Not really knowing why it was doing it. And the First Community, I found was amazing. It was the London Kink scene / fetish scene /, BDSM scene and the wonderful thing about that Community is that it is built on the idea of consent, which basically means that in every social situation, you are expected to say explicitly, what you like, what you don't like, what you need to be comfortable? What is your hard limit set? So in that kind of social dynamic, adaptions are not unusual. They are just how you do things, which was like it was a miraculous for me. And from that community, I found like the queer scene in London, great groups of neurodivergent people disabled communities, and all of those communities were built around the same idea. And so, I could say what I needed and it wasn't an issue. So that didn't mean that I stopped seeing my old friends, I just saw them in one-on-ones and in small groups where my disability was not going to be treated as a problem to be solved and then spending all of my group time and one-on-ones in the communities where my disabilities also weren’t seen as problems. And it's just been so much nicer. So yeah, it really helps reinforce that thing that I'm trying to make my head understand. That I'm not a burden in my friendships. Yeah and I can talk about sort of like other ways to apply that main concept in another video. But do let me know this was useful. Let me know your thoughts. I love to hear your thoughts, sometimes it feels a bit like speaking Into the void; doing things like this. So when you guys do like come to me and say oh I watched that video, it was useful. It just makes it so worth it. So yes, do tell me.

How I deal with internalised ableism (feeling useless)

Transcript:

Today I'm going to talk to you about how I've managed some of my own internalized ableism. If you're unfamiliar with the term, ableism is the discrimination in favor of able-bodied people or against disabled people. And the gist of the strategy is basically, I stopped trying to do things that I can't do and do things that I can do. And I'm going to give you a really specific example because ableism is like an ocean of trash that you have to wade through the disabled person. So, this is only like a tiny piece of a management strategy but like, I don't want to overwhelm people so Essentially a few years ago, I was freelancing and feeling pretty useless at it. So, I was basically doing a lot of jobs, that required my body to be at a specific place at a specific time, doing a specific job, which is how most jobs in this world work. But unfortunately, some days, my body is like, totally chill with leaving the house and doing something and then other days, it is not. It wants me to stay in bed, but then also, when it's there, it does not want to work from there either. And I was just feeling like I was the most unreliable and trash worker and that it made me like a pretty useless member of society. And that, that is internalized ableism and the problem with my thinking at the time was that I was like, so much thinking about like I need to change these things about me so that I can be useful instead of Thinking, okay, what can I do? And what kinds of jobs might let me do those things. So it was things like looking for a job that had flexible hours. So that if my body did a nope one morning, I could then just shuffle my work to the weekend. So nothing like an events job, right? That means that you got to be like functional on a specific day at a specific time and something where I could work from home, so that I would minimize Joint damage on bad joint days and things like that. And just thinking about the things that I could do really like, whittled down the list of the kinds of jobs I was going to apply for and eventually I did find one and I've been doing it for like 2 years now and surprise surprise, I'm not useless. I was just trying to do things that were not well suited to me. So yeah, that is sort of like part 1 of how I deal with the ocean of internalized ableism that ends up in your head when you're a disabled person living in a world but basically just thinks your shit and feels sorry for you. But I am not shit... Just in case anybody was wondering: Not shit. Can do stuff.

What I do when my pain won't fuck off?

Transcript:

Today I want to talk about what I do when I'm having one of those days where I cannot reduce my pain to a manageable level. So, the gist of this is that I literally have to practice the headspace that I'm going to be in or that I'm going to use when I'm having one of those days. And I realized that not the most intuitive thing in the world do I'm going to try and explain best I can So like many other people with chronic pain, I have this really long list of ways I use to reduce my pain: things like stretching or changing my posture or the way in sitting or pain medications or massage or heat. I have this long list so I'm I get kind of used to be able to like... not get rid of my pain but reduce it. So the days that I can't, that it’s just not going anywhere. It gets very panicky inside my head and it gets really hostile. I get like Angry my body and angry at the world and angry at the universe. So for those days, I need a space in my own head that I can go, that is relatively peaceful. So what my daily practice kind of looks like it's that for most of my day I'm allowed to do whatever I want to try and get rid of my pain. Bar crazy things of course, but for 10 minutes and 10 minutes only, I am not allowed to dry. I'm not allowed to shift my posture If I start getting uncomfortable, I'm not allowed to like, fiddle with my muscles, which I do, or massage something, I have to sit there and just sit with my pain. And then, because I do that everyday, everyday I sort of find little small ways to be, like, not comfortable, but just to be sort of present With it. Like, maybe I talk to it. Maybe I Envision it as a nice pretty shape. Maybe, I envisioned it as like a small kid, that's crying and needs comfort. And then when I'm having a really horrible pain day and I can't get rid of it, I already have this headspace that I can go to that says this sucks, but it's okay. We can sit here with this. Yeah and then that's useful on normal days as well, because it sort of overtime teaches me to be like, reasonably comfortable with pain just sort of existing. Like, not that, I don't try and reduce it or get rid of it on a daily basis. It's just, it makes that less emotionally stressful to be doing. So yeah, that's pretty much it. And this was so hard to put into words that I think other people will understand. So let me know if it was useful, let me know if you have any other questions? I'm personally finding this useful to have to like articulate what I do about disability things. So you know, let me know. Let me know what you do about your pain? That would be interesting.

How do I stay focussed on work with brain fog & chronic pain?

Transcript:

Today, I'm going to be answering the question. How do I stay focused on a bad day? So that's days we've got lots of brain fog or lots of chronic pain and I still got to work a full eight hours. So the key for me is basically not to try to stay focused if my brain is doing a note which I realise doesn't make sense, but it it That's so like the what I do is I sit down and the first thing I ask myself is how long do you think that you could stay focused for and sometimes the answer to that question is is one minute. Sometimes it's five. Sometimes it's 10 and then I set a timer on my phone and I work for just that length of time and then in matter how I'm feeling at the end of those five minutes. I stopped and I asked myself. How long of a break do you need? And then be that 1 minute 5 minutes 10 minutes. I set an alarm and I don't do anything that my brain doesn't want to do within that 10 minutes or whatever time it is. And after that I can cycle back around to the how long do you think you could focus for and literally I go through my day cycling between how long do you think you can focus and how long of a break do you need? And it allows me to get the work done that I need to get done without trying to force my brain to do. I think that it just can't do and that's just sort of like a general sort of key bit about how I managed disability not trying to ask myself to do things that I can't so yeah, that's basically it. I mean like obviously I can also try to do the tasks that require the least focus on that day, but I find in particular with my job. There's very few of those. So like that doesn't really help me as much but I'm sure that does help other people who You have sort of quite a few less focused tasks than me. But yeah, that's it. Please do let me know if you have any other questions about disability and how I manage things because I wanna share.

How do I stay positive as a disabled person?

Transcript:

So somebody on my insta asked me how I stay positive and focused as a disabled person. So that's what I'm going to answer in this video. Well, I'm actually going to answer the first half of that how I stay positive because it's a really big question. So I think I'm going to like cover as much as I can. So the way I stay positive is basically a balancing act of Two things. The first thing is to make sure that I am always accepting my feelings and thoughts and pain as much as I can in the moment. So that's things like when I'm sad not being like ‘no stay positive! ’Don't be sad!’ because like that doesn't help or at least it doesn't help me. So that's the first thing to balance in the moment accepting everything and then in the long term trying to come up with strategies and ways to make my life feel like a life I want to live. So like that's like small changes over time like stuff like every morning one of the first things I do is play the piano and that's because like I have chronic fatigue, right? So like throughout the day I'm going to run out of energy and if I leave the thing that's important to me: playing the piano to the end of the day, I just not gonna have the energy to do it. So I put it at the beginning and I prioritise it So stuff like that like slow changes over time to make my life look like something I like living but in the moment being super like trying to accept everything that's like happening in the moment. And I do that that first one personally I use mindfulness meditation to like teach me to do that and I've been meditating for like oh like five or six years now and it really helps me, doesn't help everyone. I know some people don't like mindfulness meditation. They use like Cognitive Behavioural Therapy or stuff like that, but that's how I do it. So yeah, that's that's it in a nutshell. Do you let me know if it would be useful for me to go into more detail about any of this stuff. So like the acceptance of thoughts and feelings and pain and things in the moment or like It's been like a really long process of like slowly inching my life towards something I like. So if you have any questions about how I did that or like just want me to go do talk to you more about it. I'm happy to do that. Yeah, let me know because I want to like be using my disabled wisdom to help if I can.