Disability Discourse: Growing up disabled.
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- Опубликовано: 15 июл 2024
- Heya!
So today's video is a little less structured than normal and basically just me having a conversation...at you for 20 minutes. I'm sorry for that, but I hope you don't mind this format - it feels weird for it to be too formal when it's something that I would chat to my friends about normally.
Thanks for your patience!
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Thanks so much for watching, and I'll talk to you soon!
![Where I've been. [CC]](http://i.ytimg.com/vi/OqMsoeFpN6E/mqdefault.jpg)
![Where I've been. [CC]](/img/tr.png)
Having "became" disabled at twelve as well, I have many similar feelings. Twelve years later I have lost all of the things that meant something to me - dropped out of college, no job, no friends, can't read or remember much - but I finally have the best relationship with my body. Working through internalized ableism (I refused to tell people about it (invisible disability) because it made me feel less than whole/human for a year when I was a teenager), working on letting go of the great fear of rejection because of my body and disability (I know that I am worthy and awesome but my loyalty has always been tossed aside because of my situation!! Ugh), and learning about the nuance of my body (I thought I had a headache so I rocked back and forth for ten minutes and it went away??? So I guess that works for me??? Yay neurodivergence) have made all of that loss much easier and sadder at the same time. You echo so many of my feelings, thank you for sharing. 💚
Thank you for your reply, I really appreciate it! I think one of the biggest things I have got from my disability is the ability (pun not intended but welcomed!) to love and appreciate my body even though it's not perfect. I'm so glad you have found something similar and super proud of you and impressed by your resilience and attitude. Thank you again for sharing.
"youre too young to have that, YA' KNOW"... the amount of times people complain about their joints or back or energy levels and then add on comments about how it's not the same for me because iI'm in my early twenties and ..gosh. I have several invisible pain/energy based disabilities and mental health ones too and... this is what I call relatable content XS you seem really cool. I feel like I need to stop here because I could rant on all of the things mentioned :p
Making friends is the hardest bit. I have two I met at a support group, they're both ill too. All the friends I had before I got sick disappeared because I was boring/tired all the time/sick all the time/didn't look sick... their words.
Ugh, I remember this feeling all too well. That's a huge part of the reason that it's so important to me to spread awareness (as much as I can anyway) for invisible/less visible illnesses. So many people don't understand and that makes a situation that is already incredibly hard even harder. I'm sorry you have to go through it. It sucks and I wish there was more I could say to help.
Know this feeling to much. After I hurt my back and starting getting sick. I ended up with 24/7 chronic pain for over three years now. I lost so many friends from this with every excuse under the sun, to just vanishing. Until you experience it personally. You will never understand it.
A little unrelated but could you possibly do a video on tips for the immune suppressed some time? It would be super interesting hearing tips from someone who’s gone through it 😊💕
This is a really great idea! I definitely don't have all the answers, but I have a few tricks from being immune suppressed for 15 years, haha. It's tough, but definitely manageable. I'll work on that as my next Disability Discourse video. Thank you! :)
I'd like to know too. Particularly when it comes to traveling or living in another country. I've been too scared to leave home since I went on meds.
Thanks so much for the feedback! I will absolutely make this my next DD video. I have lived in four different cities in two different countries alone since becoming immune suppressed and it's tough, but definitely doable if you are aware of some things. Hopefully I can help some!
What really sucks is that the government is not very disability friendly, and I believe in some cases they should supply a full time income of at least minimum wage if not slightly above. But sadly where I am from in Canada they only pay 700 - 800 dollars per month, I get 763 each month, which means I am forced to work to supplement the rest, but I am only allowed to make an extra 500 per month, and almost no one hires you for that little. I believe though its never been confirmed that I have fibermalgiya, and I also have Fetal Alcohol Syndrome and suffer from depression and anxiety. I live with my mom because I can not afford or mentally cope to live on my own, but if I had to I could do it if I had a higher allowance, I am not asking for much like maybe anywhere from 1200 - 1500 would be enough to get by if I live scarcely, or even combined with some online opportunities. If I lived on my own now, I would have to rely on food banks and my Dad to supply groceries, thankfully my Dad is wonderful that way and helps me out occasionally anyways.
I couldn't agree more with you. I am fortunate enough to be able to work full time now, but there have been times in the past where working was not a possibility for me, and there are many disabled folks out there who will never be able to work even part time. It sucks that our worth and value as human beings is so tied up in our ability to make money/work a corporate job. Humans are valuable and deserve to live comfortable regardless of their ability or disability. I think the mark of a good society is its ability to take care of its vulnerable members - children, elderly people, disabled people. The way we take care of these types of people shows a lot about what we value as a society, and I think we currently have it all wrong. The disability allowance in NZ is not great either - I don't know if it's good anywhere - and it's just sad knowing that there are so many people who have to scrape by on too little to live properly just because society as a whole doesn't value disabled folks.
Sorry for the rant, I feel very strongly about this haha. I am really sorry for the situation you're in - it sucks and it's not fair at all.
Eevee Morgan Thank you for your kind words. I’ll be okay, we all will as it tends to force adaptiblity. I can’t imagine what you are going through with chronic arthritis, though my mom can relate a little, she has had gout a few times which apparently is a form of arthritis in the feet, she says not only does it feel like pins and needles but feels puffy and swollen. Oh just realized that I’m posting under a different name now because I’m on my phone it’s ReshiJeshi btw lol
Do you know (or know of) Martina Stawski (of Simon and Martina) and #BuildALadder? She also has an invisible disability & deals with chronic pain. She and her husband do a number of different kinds of videos but have also addressed disability several times in blog and video format. Most recently two days ago on their community page here on you tube. ruclips.net/user/simonandmartinacommunity
I didn't know of them at all, thank you so much! Always awesome to add to the disability resource list. :D
Hello Eevee, I have been physically challenged iwth Cerebral Palsy and also blind in my left eye and deaf in my left ear since birth pretty much and during elementary school, I wasn't all that bullied but when it came to 6th grade, other kids started complaining saying I was "a teacher's pet" and that I shouldn't be given special treatment and I think that is a load of bull because for one thing I couldn't see very well what was written on the blackboard in school so I had to sit up front so I could see what was written down. Now in Junior High and High School, yes I got picked on quite a bit and some of it wasn't pretty at all, yes I was ostracized a lot and still am even after high school so yes these days at my age of 50, I have a little more patience and empathy towards others with disabilities but if sojme tries to give me shit, I won't tolerate too well here that is for sure. Like I said before in the other comment on anogther video that you are a gorgeous woman and I would love to be around you for sure here