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  • Hello, lovely people.

  • The topic of today's video was chosen by the Kellgren-Fozard club members

  • in a community post that I accidentally posted to everyone first

  • because technology, OK? It's a little hard!

  • Clearly I just stepped through a wormhole from the 1940s and I am struggling.

  • If you would like to join the Kellgren-Fozard club, but haven't been able to so far

  • because you can't see the JOIN button down below,

  • which annoyingly you can't see if you're on your Apple phone or different types of internet,

  • don't worry - I've put a link down below in the description.

  • Joining will of course get you a whole range of really cool behind the scenes stuff;

  • there's a monthly video that no one else gets to see

  • and you get to help me choose topics just like this one.

  • Today we're going to be talking about

  • It is a topic that I...

  • know better than I would wish to.

  • I feel like there is a massive divide in my life in how I

  • was treated by other people; how I felt about myself;

  • how I felt about the things around me

  • before and after diagnosis.

  • I have two genetic disabilities, but I was first diagnosed when I was seventeen.

  • So, for the years before that,

  • I just struggled.

  • And people thought I was lazy

  • and also that I couldn't concentrate on things

  • because I was going deaf, but they didn't know that.

  • They just thought that I was becoming a really bad student who refused to listen to anyone.

  • Also, I was super clumsy because I dropped everything

  • 'cause these hands aren't great

  • I paralysed these things for a year and a half.

  • Some of that working stuff is just never coming back.

  • However, after diagnosis, I now had a thing that I could be like...

  • 'I've got a thing!'

  • When I dropped something, people were like, 'It's just Jessica's thing.'

  • Which isn't to say that right now, with all these multiple diagnoses,

  • that you saw in the video that I just did with Claud

  • - which isn't to say that with all these, I don't get those feelings of guilt and shame

  • and just feeling really bad, like maybe I'm taking up resources that other people shouldn't be.

  • "Oh, God, I can't use my inability to do stuff as an excuse."

  • "I must work harder."

  • "I must work twice as hard as everyone else! I must work five times harder."

  • It's not a great idea.

  • 'Cause then I, you know, tend to just overwork and then I make myself sicker.

  • And, even though I have a diagnosis and I see various consultants who are very fancy people,

  • and have all these like letters after their names,

  • and other doctors respect them greatly,

  • I still have to go through all those awful tests at the hospital that come back and are like, 'Oh, it's negative.'

  • 'Oh, it's normal.'

  • 'Oh, the results for this are blah, blah, blah, blah, blah.'

  • 'There's nothing out of the ordinary.'

  • 'We don't know what's wrong with you,' and I'm like, 'Well that's nice.'

  • But something is wrong, so

  • please keep looking.

  • [Sighing] And then of course there's the worry, you know, of the tenth time I cancel on a friend

  • 'Am I just making excuses?'

  • 'I mean, I do feel pretty tired, but...

  • I felt worse last week and I still went and did that thing.'

  • 'Although I largely did that thing because someone's paying me to do that thing.'

  • 'But no one's paying me to see my friend, but I should probably prioritise seeing my friend, right?'

  • 'I mean, it's not like I need money so I can eat or anything.'

  • And is my friend going to think that I'm just really lazy and that I don't want to see them?

  • Because I really do want to see my friends.

  • I really do.

  • I miss my friends.

  • I miss friends.

  • I miss stuff.

  • And I don't want the people in my life to think that I don't want to be around them, because I do.

  • Of course I do.

  • I'd love to go and see my parents in Cornwall.

  • But they live in Cornwall, and that is an eight hour drive.

  • That's exhausting.

  • Come to me, parents.

  • But I suppose when it comes to guilt

  • and shame, they really are two very different things.

  • For me, guilt is a very personal thing.

  • That's how I feel. So, all those examples I just gave,

  • they make me feel guilty, because that's me turning on me

  • But shame, on the other hand, I would think of as

  • people outside

  • judging me.

  • So, when we drive up to the supermarket and we park in the disabled car parking space

  • because it's right there

  • next to the door, which cuts down on the amount of walking I have to do,

  • I guess people watching would be like, 'Oh, that girl seems fine,'

  • and I'm like, 'Well, by the time I'm finished walking around the supermarket, my legs have turned in like this.'

  • I don't know why they do this; they just do.

  • If I walk for too long, my feet suddenly... So then I end up walking like this as I walk back to the car.

  • But maybe people would just assume that that's just a funny walk I have.

  • And not related to any kind of disability.

  • And then Claud and I both lift stuff into the car together,

  • but maybe they don't notice that the only things that I lift into the car are like the

  • toilet rolls.

  • And maybe they're sat in their cars, judging me, and then I feel the shame.

  • So, yeah, that's what I think shame is.

  • Shame is the outside world

  • coming for you.

  • And it's especially easy to feel both of those things - the guilt and the shame -

  • when you're doing something like using a disabled parking space, or using equipment that is provided

  • for you.

  • One of the main divides here is obviously when it comes to disability equipment,

  • whether it's a mobility scooter or

  • knee braces, or

  • a disabled toilet.

  • You're using that to prevent yourself getting worse.

  • Like, you're already in pain.

  • But then sometimes I can feel really guilty about that, because I'm like, 'Well,

  • I'm not feeling that huge pain right now;

  • maybe there's someone who's at the same level of that huge pain right now.'

  • But that's not a great way to think.

  • Using things because they're preventative,

  • rather than being the person who is in the most extreme amount of pain

  • and is using them because they're already there

  • isn't an unequal balance.

  • It's just as valid to have to use something in order to prevent yourself from getting worse;

  • from injuring yourself

  • as it is to use it because you're already injured.

  • Some days I use crutches because I'm so super wobbly that I know if I try and walk just on my own little two feet,

  • I'm gonna fall over.

  • If you don't know, I have a condition that paralyses bits of me when they're injured.

  • It's ridiculous.

  • That is just as valid as someone who has broken their leg and is using crutches.

  • But again, I would say that my feeling there is less of guilt

  • and more of shame.

  • If we go back to the whole idea of what is guilt and what is shame,

  • - guilt being from within, shame being from outside -

  • I would say that when it comes to the guilt side of it,

  • I think I'm kind of OK with it now.

  • I definitely feel the guilt less.

  • I feel like I'm less crushed with the guilt of disability and thinking about, "Oh, my God, all the things I cannot do!"

  • Because I've realised that there are things that I CAN do.

  • So, yes, in my house,

  • my wife is the one who does the washing up

  • but I have great visual and spatial awareness, so I stack the dishwasher.

  • She just can't put things in the dishwasher.

  • I don't know why.

  • That girl has no spatial awareness.

  • There are ways that I take care of our little family -

  • My wife, the dogs, and I -

  • emotionally.

  • There are things that I do that no one else would be able to.

  • There are tasks that I perform that no one else can be there to do.

  • Even if it's just something like cuddling.

  • I'm really cuddly.

  • I'm quite squishy.

  • (What a way to describe yourself.

  • "Squishy.")

  • So I'm really cuddly.

  • I give cuddles, and no one else could.

  • Tit for tat, you know? If we're gonna be measuring stuff.

  • But then that brings me to another point, in that I've kind of learnt to stop measuring stuff.

  • The things that I do and the tasks that I perform

  • aren't inherently less worthy

  • than the things that able-bodied people do.

  • I make plans.

  • I can make a really good pin board.

  • Not on Pinterest, like a genuine, in-real-life pin board.

  • That isn't any less worthy

  • than the task that someone else provides by doing a call for me.

  • Equally, I have learn to stop putting people into hierarchies.

  • This is actually a lesson that I learnt ten years ago

  • when I was on a BBC show

  • called 'Britain's Missing Top Model',

  • in which they pitted disabled girls against each other in a modelling competition.

  • I mean, I don't know that you'd get away with that nowadays.

  • Think someone might have some issues.

  • It was a little labelist at times.

  • Yeah.

  • One of the main things that came out of the show was that people

  • - especially online afterwards - created hierarchies of

  • whose disability was worse and who therefore was more worthy,

  • and who deserves the top place.

  • Should it be the person with the worst disability or the person who's the best model?

  • Or the most personable person?

  • But what does that even mean?

  • "Worst disability"?

  • We're all different.

  • Things affect us all in different ways.

  • How can you say that, 'Oh, this one person has this conditon

  • and therefore their life is much worse than this other person

  • who has a condition that I guess is objectively lesser

  • from a medical standpoint?

  • But it affects their life so much more'?

  • But then, of course, how can we ignore the intersections of

  • which of these people has more money to begin with?

  • Because boy, does money play a factor when you have a disability.

  • And then we're gonna add in like...race

  • and gender and oh, my God.

  • You know?

  • People aren't just one thing. We're so many intersections; we're SO many different things.

  • It's just impossible to put anyone in a ladder

  • or some kind of pyramid of need

  • or hierarchy.

  • It's just A) not OK.

  • B) Not even possible.

  • So, yes, the person next to you in the hospital bed may have a condition that is more "well known"

  • And is considered to be "much worse" than your own condition

  • But by whom?

  • And does that mean that your own pain

  • and your own symptoms are any less worthy of being treated?

  • No!

  • You don't deserve pain, and you don't deserve to not be listened to.

  • Whether you have a diagnosis

  • or not,

  • you're still a valid human being.

  • Ruining my continuity, Matilda!

  • Always!

  • What is the point if we are all feeling guilty?

  • Let's free ourselves of that.

  • Let's free ourselves from looking around at, 'Oh, the other disabled people next to us'

  • and, 'Oh, these people have a diagnosis, but these people don't.'

  • Let's free ourselves from all of these judgements.

  • And hey, if you're finding that other people in the disabled community are giving you grief,

  • please bear in mind that it's most likely because of the ableism that they face every day from the outside world.

  • You don't need the weight of guilt, and you don't need the weight of shame

  • in your own soul.

  • It doesn't benefit anyone and it doesn't make you a better person to carry it around with you.

  • To those of you still searching for a diagnosis:

  • you will get there.

  • Even if it takes years...and years...and years!

  • There's always a light at the end of the tunnel.

  • And in the meantime,

  • I'm here for you.

  • Diagnosis or not,

  • you deserve inclusion.

  • I hope you've enjoyed today's video,

  • and that you've been able to take something from it.

  • Let me know your thoughts on guilt, shame, and living without a diagnosis in the comments down below.

  • Please share this video as well if there's someone in your life that you think is struggling with this issue.

  • And if you're new here, hi!

  • Lovely to meet you.

  • My name's Jessica, I make videos twice a week.

  • Please come and join our little clan

  • by pressing

  • [crickets chirping]

  • I forgot the word for 'subscribe'...

  • Jesus, I'm a bad YouTuber!

  • Please come and join our little clan by hitting the 'subscribe' button down below.

  • And I shall see you in Monday's video!

Hello, lovely people.

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診断のない人生の罪悪感と恥じらい [CC] (The Guilt and Shame of Life without a Diagnosis [CC])

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    林宜悉 に公開 2021 年 01 月 14 日
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