"Sometimes it's ok to grab your steering wheel, lock your doors and scream sometimes. It's ok to not be ok" I'm not disabled and I *felt* that. You are incredibly strong!
One of the hardest things I ever had to hear from a therapist was, "Yes, you've accepted your diagnosis. Now you need to accept your limitions." She was right, of course, 15+ years later, I still have moments where I kick and scream about how much I f*cking HATE my "New Normal". Just discovered you. You're fabulous and I find myself grinning about how often I'm nodding. 😁
@@AleaumeAnders Oh I'm so glad! Especially because I just had a rough couple of days with anxiety. So your comment on my comment helped get me moving today. Knowing that we aren't alone really helps!
I am now dealing with the worsening ringing in my ears that had come about due to my being in the Army and being around loud explosive noises. I am a Vietnam veteran, and Yes, there are many of us around though the current crop of war heroes are the boys and girls from Iraq and Afghanistan. We were hated, and I will never forget coming into the airport and having a guy spit on me. With that all aside, I hate the new normal I am now paying for the Ranger training and hard knocks that I have taken over the years, and my body does not do what it used to do.
Thank you for your comments. Still struggle w/ limitations and admitting I have them. Geez some days are so hard all I can do is cry and that actually helps.
I've been learning that sometimes you just have to LET yourself feel the bad stuff. It's healthy to scream, be angry, cry, be sad, frustrated. It only harms ourselves to bottle that up
I've learned that to and to talk it out I was holding things in which made things harder because no one knew and my mom knew but she would push me to do things I couldn't do because it would make things worse
One of the things I’ve learned is that it’s helpful to me to make myself (or allow myself to feel the downs of my life. It’s the only way I can live my life. If I cover those bad stuff with crutches such as drugs, false happy happy, shopping to avoid I just end up not me.
Oh lord I felt this in my soul! I've been the one to think I've "dealt" with stuff, but in reality I secretly cried myself to sleep and then bottled it all up and do the pretending with a mask on. But it is truly soul destroying, at least it was for me anyway. I've learnt that for as hard and painful it is to feel and face some things, not doing it just seems to eventually come back and smack you in the face twice as hard x
Our society as a whole puts too much emphasis on self-sufficiency. Asking for help doesn't mean you're helpless. It means you're part of society. Everybody needs help sometimes; some people need more help than others, but that's not a flaw, that's why we live in a community: To help each other.
@@0Heeroyuy01 And yet you're using the internet which is maintained by people who are not you, using a computer which you presumably did not manufacture the parts of yourself. Did you build your own house? Do you grow and hunt all of your own food? Did you make your own clothes? Dig your own well? The idolization of self-sufficiency lends to missing the very intimate ways in which we all rely on each other implicitly just by continuing to exist in society.
Were a social species after all, needing others its pretty hardcoded in there. And I say that as someone who knows few things that stress them more than dealing with other people.
Other volunteer leaders: "I'm in charge. Do what I say without question." Me as a volunteer leader: "Sure I've done this a long time, but I can't do this without your help. Let's work together as a team and I'll teach you what I know." When ya need to get things done, the ego gets in the way. We gotta learn when to put it aside.
As disabled people, we are expected to be positive and grateful all the time. The reality is that living in an able bodied world can seriously suck sometimes. I still struggle with my internalized ableism and stubbornness about asking for help, or using mobility aids. Please don't feel that you have to be positive and perky all the time. Able bodied people need to see what we deal with.
Fuck positive and grateful and thank you for your service. I would not do it again. An idiot population that would be led about by a corrupt dementia patient and his cronies deserve nothing.
To paraphrase John Green: Often times the hardest things we go through, teach us lessons. But often times those lessons could be taught in less painful ways. I think that it is totally ok to not be happy with the crap you have been subjected to as a human on earth.
i think a more positive attitude is to be happy you're alive and work hard to make it even better for as many as you can. I don't have time to be negative, too busy making it better for those who need help the most (people with multiple disabilities who are often forgotten).
I'm starting to look at my wheelchair like I do my glasses. A tool I use to level the playing field. Facing that has helped me see antidepressants (and any other MH medicine) as a chemical equivalent of a pair of glasses. They are a pain in the ass sometimes, but they level the playing field.
You appear to be an honest person with good working knowledge of yourself. So many of us don't have a world we're meant to live in. And you are trying to figure it out and to make yourself a better person. Where as others,without the same type of injury or any injury seem not to grasp the fact that you/they should learn something from your/their feelings. Something that will improve them, make them understand themselves and have empathy for others. Have you thought about being a speech writer. You are VERY articulate 😄
This was so genuine and it felt so refreshing to listen to you just be open about what you're dealing with. You're super strong and sometimes suffering feels super unfair.
I am autistic. Most of the time, I can honestly say that I’d never change that, and that I am glad to be autistic. Sometimes though, I am filled with deep resentment. Resentment of being different and disabled. Sometimes I wish I could just easily speak, make jokes, make friends, respond to people, look at people, tolerate being in a store, etc etc. Sometimes I wish I didn’t have to work so hard for a change.
Hey, my fellow autistic. I am autistic too, and you're not alone in this. I was diagnosed late, at 18, and don't even have my formal diagnosis on paper yet (pandemic sucks), and I think that because the ASD went years unnoticed, I feel it too. It is like I am autistic enough to struggle, but not autistic enough to ask for help or need accommodations. I struggled with loneliness at school and college, at family meetings, in the mall, going out, living with my family, literally every single moment I'm awake. It's tough, but think that if you weren't autistic, you wouldn't be you. It helps me a little bit. I really like to say I AM rather than i have, because it is a part of me I can't erase, and it remembers me that if I am who I am today, that's because of it. At the end of the day, I know that somewhere there'll be a place where I am accepted and respected, for example my college, where by fate they are used to have autistic students and will be able to help me through when we go back to in-person hopefully in 2022. You just have to find a place or someone who makes you feel comfortable and grab it, because they're worth it to be around
Beautifully spoken, Alex and Ana! I am not autistic, but I do have several friends who are on the spectrum, so I don't know how it feels from the inside. I do know that I would not give up my friendship with them for love nor money! They are a great and beautiful addition to my life and my life is so much better for having them in it! They have various abilities but that's part of why I love them! Keep your heads up and I sincerely hope that you find friends that are good to you and treat you well! And maybe they'll find out what treasures you are!✌💖🌞
I have not been diagnosed with anything yet but my brother is diagnosed as autistic and my therapist has suspicions about me. No matter the diagnosis, what we both struggle with, my brother and I, is how much people try to over-analyse things, can not accept doubt, and how often people give unsollicitated advice. In my case, I recently broke up with a man that was my boyfriend for more than 5 years. One of the main reasons why, is that he considered my lack of social skills something that had to be cured by a therapist, because he is certain that a therapist can teach me social cues and like make me reherse situations until I know how to act. He wasn't able to consider that there are things that can't be cured, and other that can, but should not necessarily be cured. We had countless arguments over that and one point that still makes me hurt is that this man accepts the way my brother acts without a problem, he doesn't care about the way I act now that we are just buddies, but he was not able to accept my behaviour when I was his girlfriend.
Think I'm autistic (not been diagnosed, but I've never asked to be diagnosed), but I don't really know what I could 'do' for it. I'm academically gifted and well behaved, so I was never a 'problem child', but at the same time I've always been treated as 'difficult'. From having to leave the only wedding I've ever been to early because I felt physically sick (instantly felt better in the carpark), to not being able to hold a casual conversation with literally anyone. My mum always calls me 'shy' and 'eccentric', because I don't have friends, and I obsess over niche topics like the impact of grand architecture on the socio-economic political landscape of ancient Minoa. But what am I suppose to 'do' about that? I can will myself to stay at parties and act happy so that people like me more, and I can listen to inane subjects going "uhu, uhu", but I'd be just as depressed and anxious (actual diagnoses) than if I did none of those things.
Honestly, I feel this even though I am somebody with a moderate to severe anxiety disorder, PTSD, and autism, and am not an amputee. That is part of why I follow you - as I know the feelings you go through, yet try to remain positive. You may or may not remember me (I had bought your Everyone Deserves A Limb sweatshirt), but just know you 100% have my support through all of the emotions you feel.
Maybe I’m just a jerk but after the airport said they’d take an hour I would have told them to call a tow truck on one (preferably all) of the vehicles in disabled parking that didn’t have a placard/plate🤷♀️. I know it’s not the point of the video but if I’m gonna be inconvenienced then im gonna inconvenience EVERYONE else who deserves it😂 I loved the video Jo and it’s amazing that your talking about these “hard” things that people don’t talk about enough!
No like legit if there's people without placards in the disabled spots and you need one, then reporting them so you can use a spot is helping the system work for you. It doesn't need to be vindictive. You're also helping the next person who needs a spot. I know that sometimes people who need a spot won't have a placard for a variety of reasons, but they knew the risks when they chose to park there rather than calling to see if there's another solution
This video was suggested to me by UA-cam. I’m really impressed with how well you talk. It’s as though you had scripted it all and are reading it off a teleprompter. Very well presented.
She’s like motivational speaker 🔈 without even trying.. Everyone has there awful days it’s nice to show that it’s okay to not be okay all time!!! Jo does a great job of expressing all the emotions it’s very refreshing!!!
Jo, It’s your channel, you say what you wanna say.. my wife has a saying: “Not everyday is going to be pretty”. This is 100% our reality and you are 100% entitled to your feelings and I’m glad you shared this.
I love how honest with emotions you are. Integrity to who you are is essential to being you. As a former police officer I paid close attention to the handicap parking and enforced it fairly and sternly. Upsets me when non disabled park in them since usually there are just not enough for the need. Good on you for being who you are and sharing it with us.
I DESPISE THOSE people (jackasses; sorry but I had to..) who take the spots without having a need to be there/even a permit saying they "belong" there... You are definetely allowed to feel that way, and or say whatever you need to for your own mental/physical health. Agreed on needing help too, I also have trouble at times accepting help from those around me too
Agree!!! And I feel like it is ok to admit that you are not ok all the time. I'm also 2 years in and I hate the sympathy and toughen up speech, sometimes I just want someone to listen.
Reminder if they have a permit, they do need it. You may not see their disability (like if Jo was wearing pants and you couldn't see her prosthetic) plenty of chronic illness and disabilities don't "look legitimate" when judging from an unknowing lens. Those who don't have a permit whole other story! That makes me rage!!
I love my mom, but she has a handi-cap tag that she doesn't always need. Story is, she got it when my dad was sick and dying and kept it after he died. About the same time as he was on his way to the other side, she had a knee replacement. Now the knee is over a year healed and she can move pretty well until her other issues flare up with her nervous system condition. My issue is that she will take a handi-cap spot when she is fresh and not in pain and I will argue with me when I offer to drop her off at the door and go get the car when leaving like a valet to keep from taking up a space, especially at places like the hospital. Places like Wal-Mart on a busy saturday is a free for all, but the hospital especially shoudl be reserved for those who are in dire need of it, not just a arthritic knee or swollen feet.... and especially when your daughter is offering to drive you around like you're the POTUS. I love her... but it is so embarasing.
I hear you. I’m autistic, and the world can be really confusing and it can be really hard doing some basic shit. Right now I’m trying to do job applications, and it feels like the whole process has been designed with the specific goal of being incomprehensible to me. I now that’s not the case, it’s a by product of how I function, but it sucks when you really want a job, i just feel like me and the process are incompatible. And while I appreciate the effort of those around me, they aren’t actually helping. They’re telling me I need to pull this out and do this, or that. And I’m like, “what are you talking about? That doesn’t make any sense” Damn this is tough.
As someone that also has a disability, several if I’m being honest, I can really relate to everything you’re saying. In my experience people have treated me asking for help or expressing negative feelings as attention seeking and being lazy. Which only has served to make me feel worse about all of my disabilities. I can not think of a single positive thing that they have brought, no matter how hard I try. Recent experiences have shown me that I hate them and if I could get rid of them and be “normal” I would. All that to say, you’re not alone in feeling this way.
Disabled from spinal cord tumor- I’m trying to be brave enough to not just stay home. The world is NOT built for us or often even accommodating. Thank you! ❤️
Hey Kim, I had a benign tumor removed from my spinal cord about 5 years ago. I was quite active, mountain climbing, etc and now I force myself daily to perform perfunctory tasks. I depend more on GOd now and He gives me the strength to endure and achieve. Never give up! We still have it much better than the disabled in third world countries which has little or no infrastructure to accommodate those with less capacity. I was getting my physical therapy in Peru 6 months yearly due to financial restraints but excellent attention and efficacy.
You hit the nail on the head! My 28 years of chronic pain and fatigue is not a visible disability (which leads to misunderstanding and judgement from others, perpetuating the “over do it” cycle....ugh), but has limited me in so many ways. That leads to me doing WAY too much, trying to prove my independence and because of my stubbornness to not let my health issues limit me. I’m learning more and more, at almost age 42, that yes, I’m amazing, and have achieved amazing things, but in trying to “do it all,” it takes a toll on me, and those around me. So, I’m getting better at asking for help, and saying “no.” Still not great, but better. I TOTALLY hear you in your raw emotion. We, as people (dealing with real life circumstances and emotions), don’t always have to go around throwing confetti and passing out cupcakes. Sometimes life just sucks, and we’re allowed to stop and have a tantrum, and then keep moving forward. In fact, I think that is NEEDED, from time to time. You ROCK! Thank you!!!!!
Thank you thank you thank you so much for sharing this story. I have no physical disability but struggle with mental illness and some days just a tiny insignificant thing can break me. I know exactly how you felt and it is so helpful to hear someone else express similar feelings! Please keep being brave enough to share your stories! Thank you Jo! ❤️
THAAAAAAAANK YOOOOOOOUUUUUUUUUUUUUUUUU!!!!!!!! THIS GOES FOR ALL KINDS OF DISABILITIES AND IM TIRED OF PEOPLE PRETENDING THAT WE LIVE IN A WORLD THAT IS BUILT FOR US!!!
36 years into life as a disabled person and I still get pissed when I think of how the world isn’t built for people like me or even worse that some people don’t realize or care! Screw anyone that tells you to toughen up or that you’re not allowed to be mad at your disability, I’m one of those weirdos that actually loves my disability and consider it a source of pride and I still yell at my body and brain sometimes! You’re an amazing role model for our community and am so grateful I found you!
Wow! I have had the just deal with it, most my life. It's so refreshing to hear living with a disability is difficult and some days it's honestly too much. And it's okay to say that! I have cerebral palsy by the way. You think being born like this I would learn to adapt lol 😆 but the older I get the harder it is to just be able to walk.
I was also born with my physical disabilities. As I age, my limitations have increased. Each time they have increased, I have to go through the process of accepting them so I can continue to truly live my life. COPD from asthma, needing oxygen supplementation, and chronic fatigue were my most recent challenges. And I'm in physical therapy again because when I decided to start walking with my rollator again-just 220 feet around my apartment courtyard-I injured myself. Sigh. I'm rebuilding core abdominal and gluteal muscles now so maybe I can walk for exercise again. And sing well whenever church choir can safely meet again.
Hey Jo As a blind person there are days when I am happy and I feel like being disabled takes my life in so many wonderful ways and I have met so many wonderful people because of it. But there are days when I feel STUCK in the biggest rut, held here by my disability. You are right, the world is not meant for us. Sometimes its hard, and sometimes it gets easier. I think its important that you learn to ask for help. Asking for help does not make you less independant, in fact it makes you more so, because then situations like this become less stressful, less anxiety inducing and are over much quicker so you can get on with your day. But you will learn that I think in time, as I have. If you need to talk you can talk to me but I hope things get better for you. Love from the UK.
Thank you, Jo!!! Thank you for talking about the struggle of living in a world that wasn't built for you. Body positivity is amazing, but it's super shallow if we're not acknowledging our struggles too.
As someone with a disability, the best thing anyone can say to me (instead of "I'm sorry") is encourgement: "you can do it, keep going, don't stop now!" ps: I hate asking for help as well
I use a cane only when I go out, and sometimes don't actually use it. I've been told I don't really need it. Yes, I do. Not only is walking more than a few feet painful, but I can NOT get up to my second floor apartment without it. So I have to carry it.
I hate it when old men treat me like I'm belittling them when I offer them assistance instead of seeing a person trying to help lighten their hardship.
@@sleepup7931 You are a good Person . However there is such a thing as "Unwanted Help" . I usually try a positive statement like "ya got things under control my friend?" and I'm ready to jump to the assistance of anybody who hints at needing help. Been there Done that .
My wife has anxiety. There are times it gets bad. Today for instance she was screaming at me about all the small things bothering her. It felt like she was mad at me. But she wasn't. So I listened to her. Told her I loved her and even though it may not help saying it will be ok I told her everything will work out or we will make it work out. Shes worked over 65 hours this last week. Makes sence everything will get to her. I asked her if she needed anything and she got upset. So I helped. I gathered her work clothes and what she needed fornher meeting and we went on our way. The drive helped her calm down. I dont know anything about your husband but I'm assuming he does the same for you.
Jo, thank you so much for posting this video and telling your story! I'm not an amputee, but as someone who is disabled (was born with left clubfoot and have osteoarthritis in my left ankle) I know EXACTLY what you're saying. I've had my able-bodied family and friends always give me the lovely, positive mantra of "It could always be worse and you've seen worse!", but thanks to years of therapy, I've learned being frustrated with my disability is okay! I so appreciate your honesty and just saying, all in all, that "it's okay to not be okay even when you're not okay with your disability sometimes". Take care Jo and take it easy!
Omg thank you Joe. You’ve got me in tears right now. To know that I’m not the only one out here who feels this way. Or has days where I just don’t want to get out of the bed much less anything else. I’ve been watching you for a short time now. My cousin lead me to you cause she saw my struggles. And how I hate sympathy. Or some one telling me to suck it up and move on. So now when I get those moments. I lock myself in my rv where I live and don’t let anyone see me get like this anymore. To see you explain just how I feel is overwhelming, but healing at the same time. Thank you for being you and speaking out! I just love you for that!!!🥰🌹
I am so glad you spoke out about this. I have been having this same issue. I have hEDS and never look disabled. It’s really fucking hard. Thank you! Weakness is so important to talk about. Today, I may scream in my car too.
Also have hEDS (among other disorders), get a cane. It's silly, and stupid and screwed up. But a simple cane is enough to tell most people you have something going on. That's enough to break the " invisible disability " barrier. It won't stop you from having to explain things to someone, but at lest they can " see " something is going on. I'm lucky, I may have hEDS but it's fairly mild for most part. Sure constant pain and sub-locations aren't uncommon. at least the pain is usually what I can handle without drugs and I don't get serious dislocations. But the rest of the list is hard to deal with every day. Autism, ADHD, PTSD, Depression and both general and social anxiety. And none of it is " visible " so without the cane it is a constant battle to get people to recognize I really am disabled. Still waiting on federal disability, hearing late fall. Wish me luck. Don't think I can handle another year on just food stamps and GA.
@@loganskiwyse7823 I’ve honestly been thinking about getting a forearm crutch. They work better for my lifestyle. Plus a labral tear so I guess I have that. I also have a lot of mental health stuff. ADHD, PTSD, depression, anxiety, borderline personality. I hide it well.
@@elaboratelizard Smiles. I used to hide it better long before the diagnosis. Last few decades ended that. Weird fact, Autism and hEDS are comorbidity and Autism with ADHD affects roughly 65% of people with Autism. Most doctors are not equipped to diagnosis Autism if it's in the Asperger end. This is doubly true in females, where even basic Autism is often missed. Considering the overlaps, it might (or may not) be worth investigating with a clinic that specializes in testing for Autism. That's what I ended up doing, sadly they where not equipped to help with any of this beyond that at my age. Kids yes, but adults in my age range where outside their programs or skill set.
@@loganskiwyse7823 I’ve actually been tested twice. Because I started speaking early they decided I am not. I honestly think I am. But I am too worried with my parents because my brother is and I’m not his level.
@@elaboratelizard ASD is a huge spectrum and speaking early is not a indicator if you are " high functioning " and still have Autism. In fact it can be a indicator you are Autistic and on the Asperger end of it. I am serious about the specialty clinic. Try ANNE, see if they can point you to the a higher quality testing location. Getting training to deal with how your Autism affects you and ways to work around that is incredibly important while your young. Because I was not diagnosed, and received no training or support I am at the point where every time I fall asleep I don't want to ever wake again. If I had gotten what I needed as a child, I suspect that would not be the case. Also, be aware not all states recognize Autism by the same standards. I can't speak for your state, but it may not be possible to get a diagnosis even if you have it because of the limits placed on doctors by politicians.
Thank you for sharing this. Some of us that have that struggle on the inside and isn't physically visible, we can really relate. I feel seen & heard. Thank you. I've definitely had this days. Sending you all the strength & love in the world.
See - struggle should not be invisible. That goes for everyone, and especially in this context for all of us in the disabled community. The reason the world is not built for accessibility is because those who are designing it are not seeing what is needed, or if they are, they aren't seeing how important it is that we get what we need and then actually endeavoring to make it happen. I really don't understand how humans became so avoidant of communing with struggle and hardship to the point that now people just want to believe that everything is fine and anyone struggling is doing so iNsPiRaTiOnAlLy. Seriously, how did we get here? Anyway, you matter and are valid and that includes the rage-quit days, too. I for one really need to see other people in my community talk about their struggles, as it is so healing to know that I am not alone in mine. Please keep sharing (and rest that leg!).
I hate to say it but most individuals won't accept anything outside their direct experience. I can not say how many times I have heard or read that all the risks of covid are made up or fabricated because no one they know had any serious consequences. And I can not say how many stories I have read of people that lost multiple family members, healthy teens, or direct serious consequences as well. It's easier to " believe " something if you experience it for most people, anything else is too abstract for them to step outside their own comfort zone and " see ".
@@loganskiwyse7823 Oh, you are exactly right. This entire year has been a cycle of grief and loss for me, and I'm still seeing people in my city who deny anything ever happened. It's infuriating and makes me feel hopeless at points. While I know people are somehow doing it, I truly just don't understand how you could live through this last 16 months and NOT see the grim reality of what's been going on. And even when people DO have those direct experiences sometimes, as you've said, they still disbelieve or deny what is right in front of them. No matter what I do on my end, I cannot "make" someone have more compassion or empathy or be capable of imagining others complexly. I just want to also combat the idea that because certain individuals won't see me or my experiences, that I should therefore think twice before I share them (even if they aren't heard by some folks, they will be heard by others). Sharing your story is a radical act, even if the audience is small.
@@EmmaCreatively Agreed, completely. Even if it wasn't seen as " radical " to be honest about our difficulties within our various disability communities it can be just as hard to find people that will listen. I'm a old fart, and only recently diagnosised with most of my disorders. Lost all family and friends long ago. Finding people to share my experiences with isn't much of a option. The best I can do is relate some of it here(online) or try to give better advice then I ever received to others. Sometimes knowing I helped or shared stories with others helps me feel better. Sometimes.
Inaccessibility fuels a horrible cycle it starts with inaccessible design. Then few disabled people come because it’s inaccessible. Then changes aren’t made because “oh disabled people don’t come here so we don’t need to change”. Repeats over and over and over
all the feelings you expressed seem completely reasonable and really any way you feel should be valid. if someone feels like something like an amputation is genuinely one of the best things thats happened to them, thats valid but if someone doesn't feel that and feels like its something neutral or something bad or anything in between thats also completely valid as well.
I was having one these days today and I knew I wasn’t the only one that feels like this. But hearing someone put this feeling into words felt so validating. Thank you for posting this. You’re videos really help me feel less alone in this. As someone who is autistic it also helps me be able to voice to my therapist what I’m feeling when I have trouble explaining it myself.
I feel you 100%. Except where my struggles exist is all mental, so invisible if you will. This makes it so hard to convince people that I really am struggling. So I just wanted to say thank you. Because you are really inspiring to me, and I’m sure many many others🌹 thank you again😊
I’m in a similar boat. “I must power through. Good people power through!” Cue me getting incapacitated and/or breaking down. Stupid society insisting “good” disabled people must be more capable than ableds.
Alot of the time "stay positive" sounds like people are trying to say "I don't want to hear about your struggles" and it bothers me alot. I know sometimes it's genuinely people trying to offer advice, but alot of the time it comes off more as "I don't want to hear about your problems" by some people and it's really not okay. I don't have any major physical disabilities but I have a lot of mental health problems that cause problems, and while they're two very different kinds of problems to have (I'm absolutely *not* saying that having ocd etc. Like I do is the same as missing a limb) but I understand that people default to "stay positive! get over it and keep moving!" I think it's good to normalize people opening up about their actual problems. You're incredibly positive and strong and I love that you come on here and open up to us. I've learned so much about what people with physical disabilities go through (I work in a health center, so I'm glad to have this perspective so I can try to accommodate better to patients with disabilities). You're not obligated to pretend "everything is okay", because sometimes it's not, and that's okay.
The gracious disabled person crap is to please abled people, it’s just another form of ableism (and don’t get me started on inspiration porn). There are plenty of disabled people who feel the way you do (hi 🙋🏻♀️) it’s also never ok for anyone to park in the accessible spaces if you don’t need them.
Yeah, it's mostly fake. I've said (and meant) that I'm grateful for the outcome following some of my struggles. That hasn't been typical for me and I doubt it is for most of us.
Scream away my girl! The bs about dealing gracefully with disability 24/7 is just that, bs🐃💩! If you keep that crap in it will eat you up! Sure, you keep a lot of us in better spirits watching you, but you are a real human, with real feelings! You are allowed that! So scream away! Just make sure you bounce back, 'cause we love you! 😡😱😉💖👍
Omg! I so needed to hear this today. I found your channel recently. I had spinal fusion surgery 3 years ago and now use a walker or hiking poles for walking and Effing hate it most days. But I slap on a smile and go to work and carry on with my day satine exactly the things you touched on. Thank you Jo for reminding me that it's okay to still be pissed off at the situation.
I've been disabled my entire life, and even 20 years into this, even as used to my body as I am, I still get angry and wish I didn't have to deal with the BS sometimes. However, I no longer wish I wasn't disabled, and here's why: I realized a couple years ago that my anger was misdirected. I've spent so long being angry at my body for needing help and having limits, when 99% of that isn't my body's fault. The problem is with the ableist society we live in. I've learned it's more constructive (or at least less harmful) to be angry about the fact that the world isn't designed for my body, rather than the fact that my body has limits in a place designed to limit it.
I’ve been disabled my entire life too. When I was young I remember thinking that if everyone was like me. The world would just be made different. I was too afraid to say that to anyone. Because I thought it would be twisted or misunderstood. I’m so glad to find people who would understand me:)
YES YES YES!!! Accessibility is a right! It's justiced to feel anger, because it's unjust, so many of the hard things about life with disability could be minimized by a more accessible world. The disabled parking was an afterthought vs a priority, or they would create more accessible parking and/or enforce with tickets/warnings so there was not a culture that seemed ok with those without credentials using spaces not for them! On a larger level, if people better understood disability, beyond just inspiration porn or people to pity, but as people, people who need accessibility, as a civil rights issue, Life with disability could be soooo much easier! Society can do better. It feels like we see moving forward, it's just a slow process and we gotta keep at it! Hope for an accessible future!
This is not going to be popular, but I respectfully feel the need to disagree wholeheartedly. Being angry at the world isn't going to help, and it isn't going to give you peace, its just going to leave you angry. (not that we haven't all felt that anger) This concept that "I wouldn't have it any other way" is just ridiculous! If people would be happier disabled, everyone would disable themselves to "Join in!". And, while yes, accessibility is important... accessible for whom? Every disabled person has different needs and meeting them all is HARD! That doesn't mean we as a society shouldn't try, but it is never going to be perfect for every person. Ok, no one should ever park in a disabled spot unless they have need of it, full stop, no argument there. The bottom line reality is, people with disabilities ARE different. Not just from the able bodied population, but every individual disabled person is different. Life, not matter how much we want it to be, is NOT fair, it never has been, never will be, and furthermore inherently can't be. We all have different struggles, challenges, and problems on any given day. The only way to get past the anger is to accept yourself as you are, the good AND the bad, and live your own life to the fullest. Sorry for the rant, I am just an old lady on a soap box, that has been there and done that with the anger.
Disabled people are always going to be disabled, are always going to have struggles, even when the world is as accessible as possible. Like I know half of our struggles *are* due to society, but we're still disabled even with accommodations. I'm autistic and ADHD and while many of my struggles would be helped if I had proper accommodations, I'm still going to have these struggles, whether I'm being accommodated for or not. I'm angry that I have struggles that I can't do anything about, and I'm also angry that the world doesn't accommodate people like me enough. These can co-exist.
Those feelings are valid, Jo. I understand. I'm a LBKA myself. If expressing it makes the meat-legged uncomfortable, feck 'em. Please let yourself feel those things; trying to just pretend it's all fine is hurting you.
@@steinistein8611 it's entirely relevant! You're clutching your pearls because a man with one leg made a crack about the normies. What, do you think that's punching down somehow? I'm really interested to see how you can justify that idea, Karen.
@@steinistein8611 holy mother of false equivalencies, Karen. Do I really have to explain this? Your counter example is ableism. Period. Anyone who balks at the completely anodyne "meat legged" is just desperate to get into a fight over some dumb shit.
@@steinistein8611 you're exuding big "all lives matter" energy here. You don't get to walk into a space for disabled people and condescend to us without consequence.
I thought meat-legged was hilarious (as a person with 4 meat limbs). XD like...oof, that sounds disturbing but it's just true! Kind of like that moment when you realise that there's a skeleton inside you, how spooky.
Once again, well said! Thank you for being honest about your bad days, and how living in a world that wasn't designed for you is exhausting. I'm autistic/ADHD and I feel that too. Some days I'm proud to be who I am, but other days I'm just so tired of how hard it is to be different. I feel like society at large tends to only relate to disabled people as inspirational or tragic, and which group you get lumped into depends on which version of you they happen to see.
Thank you. As a disabled person, thank you for being honest about how much this sucks. The world is definitely challenging for disabled people, and I don’t feel like there are enough of us out there being honest about the struggles and how much it can truly suck. I hope you have good days ahead. Thank you Jo ❤️
Thank you, thank you THANK YOU! for sharing this. I live with rheumatoid arthritis. For the most part I cope, but honestly there are days I too want to scream. There are so many people with disabilities that make a living from being continuously upbeat that it seems like more and more people see that and think that somehow I'm supposed to be grateful for my disability, and how much it must have taught me. I'm with you. I might cope well with my condition, but that doesn't mean that it's fair, or easy, or a blessing. What's worse is that although perfectly normal people are aloud to feel depressed and stressed and frustrated, disabled people are so often made to feel like any day we might feel frustrated, or depressed or like our situation is unjust, these feelings somehow stem from our own weakness of character, like somehow we're supposed to be above the feelings of stress, depression or anxiety that people without disabilities feel everyday. Feeling those emotions doesn't mean your weak, or that you haven't completed your 'journey' as you put it. It makes you normal, and sharing your feelings doesn't mean your winging about your lot in life or that your seeking sympathy it just means your venting frustration, just like it seems most people need to do when they have anything to do with airports, it's normal, and watching this made me feel a little more normal too.
I hear you. I've gone from physically fit to disabled in last 5 months.I was not aware how little the world was designed for those with disabilities until I was disabled myself. Despite following channels like yours before all this. So thank you for sharing. Makes me feel less alone in all this. And sometimes it's the little frustrations that cause the bucket to overflow. Things pile up.
Just wanted to send you good vibes. I went from being physically fit to overnight crawling on the floor to get to the bathroom. It’s such a hard hard place to be... I’m 3.5 years in... and while you’ll grow to adapt and adjust, life is hard when this situation happens. And it’s okay to acknowledge that and feel that too. 💕
I absolutely love your videos! You’re totally relatable as you’re sitting in your suitcase, unshowered, telling us about how you just want to scream at the top of your lungs. I’m a wheelchair user and there are days I can wear my “I’m only in it for the parking” T-shirt, then there are days like the one you’re describing. Thank you for sharing your experiences and feelings with us. It’s nice to know that there are people out there who understand and relate to what you’re going through even though what we’re going through isn’t exactly the same.
Disabled here with ADHD, Depression, Complex PTSD, Misophonia, etc. Somehow everything you said really hit home for me even though I am luckily very able-bodied. Amazing. Thank you for letting me know I'm not the only one screaming with frustration.
As a Chronic pain warrior with Pain in both legs aswell as dysfunction in my spine and elsewhere, thankyou for your honesty and vulnerability. You are not alone. You aren't the only person who gets frustrated with your limitations.
Love the suitcase recording booth. As for the rant, good for you. We all need to rant from time to time. As someone who is currently temporarily-abled, the few times when my body has refused to do what it normally does drive home just how poorly our world is designed for the disabled. Like the time where my shoulder just... froze... for nearly a year.
I was born paralyzed and turned 40 in March and have never walked in my life and this resonated with me so much! You don't need to put on a brave face if you don't feel it! Own your truth! I'm just starting to learn that myself!
YES! Anger is valid. We hope for a future that's accessible. So much of what makes life with disability hard, are things that *could* be accomadated, in an ideal society... Not solely just by the airport throwing together their best effort as a "nice" effort, but as a society working together to recognize that accessibility is a right! If there's people regularly parking in disabled parking who aren't displaying proper qualifications, that shows an issue with that system... Maybe they need to look at designs, perhaps there is a need for short term parking spots (and/or enforcement of tickets/warnings)... But, beyond that, it's an issue, regardless of why, if there aren't enough disabled parking spots. Period. Society (at least in this socioeconomic context, in the country we are in, generally speaking) has the resources to handle this type of issue. If all the disabled parking places are being filled with any regularity, that IS upsetting! That means that some disabled people are being denied access! If someone can't park and get into a facility, it doesn't matter how "accessible" that building may or may not be, because some people won't be able to access it if they don't have accessible parking. Yeah, it's "nice" that the employees offered some kinda sorta "work around", and I'm not faulting them, but the system as a whole failed to provide *appropriate* access. Even the way that it feels like we all must fit being palpable at all times in public spaces, that's relable, but it's an unfair "box" for anyone to be in... But it makes sense, as do the expected responses, because most main stream media representation of disabled characters is as "inspirational" or as something to pity... Usually there's limited representation of a fully formed, 3 dimensional character, just living their life with disability being just facet of their journey, vs their disability being a plot point. Even rarer is the part actually played by someone living with disability. So this all *is* upsetting. Because yeah, there's aspects of living with disability that suck, full stop. The pain would be painful regardless. But you shouldn't have had to be faced with waiting around indefinitely for someone to do a bunch of special ideas to make it kinda sorta more workable or be faced with having significantly more pain (that is entirely avoidable if the facility was *actually* accessible!). We feel anger over injustice, and that can be a beautiful, amazing, WONDERFUL thing to feel! Anger gives us the passion to fight for what's right. So you *should* feel angry. EVERYONE SHOULD FEEL ANGRY ABOUT THIS! Not just this one particular situation, but at the fact that accessibility is consistently an afterthought. Think about it. Imagine if someday, people learned to think about accessibility as the civil rights issue it is! Imagine if facilities regularly paid attention to the availability of accessible parks the same way they would of any other parking spots. I'm sure that if standard parking was regularly filling up, there would at least be awareness and plans to improve the issue. Yet it's just accepted that disabled spots are sometimes all full. Why is it different? If it was treated as important, as it *is* important, the issue likely has better solutions. If all accessible parks are regularly filling up, that seems like a clear indication that they should create more accessible parking! They should also figure out why cars without placard/plates are using accessible parks and figure out how to resolve whatever factors lead to that occurring!
Anyways, sorry for the whole long rant, it just got us thinking about it, and it really IS an issue of accessibility, and it's not ok. The airport, on a high up level (like, the managers and people who make the big decisions etc, not the individuals who were just trying to figure out things on the fly) should learn to pay attention to make sure there's parking for *everyone*. Not everyone would even have been able to accept the attempted improntu "accomadations" you were offered, since there are wheelchair users who cannot transfer out of their chair or just like... There's definitely potential people who they wouldn't have been able to offer that brainstorm to, including people who just can't wait, for whatever reasons. It's a completely solvable issue though, if they made it a priority to ensure enough accessible parking was available. We hope for a future where that's the norm. And you are working to make that future! So just... Know that you don't have to apologize for getting angry. It's good. It just sucks that, on an individual level, it's so hard to be able to channel that anger into solving systemic injustice. But maybe by presenting these ideas to more people, more people will get mad, too. Then real progress can take place! Thanks for being so brave to share that you get angry, too. So much of what makes life with disability hard isn't the disability, it's the lack of access, that could be resolved, and it's the isolation of not having people "get it"... But if everyone could change their thinking to recognize accessibility as a right, it seems like there would be so much less struggle and isolation.
Even more important than just sufficient parking spaces might be sufficient public transit. Not everyone with a disability will be able to own a car or even drive safely!
I truly appreciate your honesty. I've been feeling this feeling exactly and have not been able to shake it. Your words meant so much to me. Thank you. 🙏
From the words of South Park. "It's about people getting together and feeling what they need to feel. People need help sorting out their emotions sometimes. And the best thing isn't always quick answers, but just being there, supporting each other and talking through those feelings." Feelings are complex and we all have them. It's wrong for people to attempt to dismiss them or belittle them with sympathy. (I also ask my younger sister if she needs advice, or just to vent, that way I don't give unwanted advice that is potentially belittling.)
I was holding it together for most of this video but when you said some days you just can't deal with it I must admit I had a little cry. That feeling you were trying to put words to is how I feel almost all the time at the moment and hearing your words just made me feel seen. Thank you, thank you, thank you for making this video it was really what I needed. Also I just want to let you know that as a fellow human who deals with chronic pain I think you are a superhero - it takes real strength to share this (more than lifting a 50lb suitcase!!)
I love that you’re willing to be honest about the difficult days in a world that isn’t made for you. I found a lot of the emotion resonating with me. I’m not disabled; I’m the “token single person” when it comes to most everything with my social circle and family. And most days I’m great and loving life. But when the table I’m at is the only one with an odd number or ‘this Christmas we’re exchanging family gifts’ or yet one more person asks if I’ve come alone…sometimes I just want to lock myself in my car and scream.
You are not alone. After decades of dealing with my limited mobility, I still have times where I am filled with anger. Family tells me to ask for help and then when I do they put off my requests. Then I'll attempt to do things on my own. Then they ask why I didn't ask them for help. It's a cycle that is so maddening! Rage is the result of unmet expectations in my opinion. Wishing you a blessed day... with freedom to rage. ✌
When I look at you and listen to what you have to say all I see is your beauty, kindness and compassion. You have no hardness or bitterness in your face. You clearly love animals. You are beautiful inside and out. You are an inspiration.
I dont think there's anything wrong with being angry that the world isn't made for you. In fact, I think people need to say it more so that the world can be more accommodating. I am constantly upset with the ways that the world is not built for people like me. Especially because of all the ways that it could so easily be different. Expressing that anger and frustration is the only way things will ever change if not for us then for people like us in the future.
Your honesty on the realities of your life is refreshing and why I watch your channel, most of us don’t have any idea what struggles you have. What you say makes so much sense especially your mental health advice. Thank you Jo. ❤️
I am amazed at your courage to express things publicly despite feeling they have no place. Listening to them they feel completely reasonable and that it's good that you expressed them in case others feel the same way. But I can imagine it feels very different when choosing to do so. I'm glad you chose to, I love your videos. Thank you for making them!
Hi Jo, fellow right BKA here. THANK YOU for expressing the very normal rage/frustration/sadness we the disabled sometimes experience. I’ve lost the ability to use my prosthesis due to a degenerative cardiac condition, and am now wheelchair bound. And as a terminal dialysis patient, I completely understand the spirit-crushing truth of having to ask for help. Please know that your emotions are valid and that NO ONE has the right to set expectations for YOUR journey. I’m so glad to have discovered you and am honored to be sharing your truth. You don’t need to stay strong. Just stay. Hugs and love, Chris Durham, NC
Thank you for sharing your story! As someone who is not disabled and who often sees disabled people talking about their disability in a positive way, it was nice to hear that you have human moments, too. Not that I didn't think disabled people didn't have feelings like frustration with society. Those are very much valid feelings. I understand that you might get frustrated in this world not always accessible to you. It was nice to hear someone put it to words. In a sense, you are erasing the boundaries that sometimes exist between the abled and disabled. Again, thank you for sharing your story :)
Mostly Inaccessable in small and major ways... We feel the pressure like Jo said to be so much more positive about our disability to make ableds feel better and to meet the standard of the "good strong disabled person, beating the odds" There's so much pressure to not express the anger and frustration at the hard stuff. The vast majority of that hard stuff is to do with a world built to exclude us, people not understanding or caring and also excluding, some of that hard stuff includes physical pain or fatigue... I would encourage you as someone open to learn and understand to research more, look into the social model of disability, follow other wonderful disabled content creators. Thanks for being an ally. ❤️
Thank you so much for sharing this. This is really helpful for me as a stubbornly independent, invisibly disabled person. It is so important that people like us hear that we're not the only disabled person who deals with these things that we have so much trouble talking about
Sweetheart,you have every right to feel the way you do. I am an amputee since 10 months ago. I feel exactly the same way. You are not alone. I am so blessed to hear someone express the actual reality of life. This is a great video !!!!! Thank you for acknowledging your sincere feelings. Love 💘 it....
You are not the only one acepting the help when its needed.... I have 2 hip replaced, 1 shoulder and a spinal fusion.... good days i can walk and nothing bothers me.... but those days where everything hurts.... its like you need the help but in your mind you tell yourself "dont be a baby... or its not that bad"... and I end up worst in later on.... so thanks for posting this.... I see i am not alone when i feel that way...
I feel this on a deep and personal level. Most of the time I just wear a mask pretending I'm not struggling but once in a while it just feels like too much and it's hard not to feel bitter when my strength fails me temporarily
THIS! So much of this. Like, yes, you are strong and resilient and can do a lot, but it sucks to need to be. I am so glad you share these real moments, because they are so normal and it is so important that people can see this.
Hey Jo, sending lots of love! PS: This has been my go to comment to many of the UA-camrs I like lately, because I don't always know what to say and I understand I have no idea what they want to read or need to here, so this one feels safe.
What I feel resentment about the most is that I feel like my disability makes me more vulnerable to others. They can choose to help me or choose not to when I really may actually NEED their help. That’s what makes me worry when I’m out in public places or especially when I’m traveling alone, which I really enjoy doing. I fricken hate that and I am angry about it a lot of the time. I think it’s fine and healthy to be angry about it as long as it’s not changing who you are as a person and you aren’t aiming that anger at anybody or yourself in a destructive way. I get over it and do try to still get out there and live and do what I love even if it’s scary and I’m vulnerable… clearly you do too!!
@@kimrider969 Completely understandable. That's my parents age. I'd offer to help if I could since I'm used to doing that for over half my life and I'm only just 30 XD Not really a way to spend a life but oh well.
Honestly, this is exactly why I love your videos. You aren't trying to sugarcoat how you say things, you say it as it is. The thing that helps me the most is solely that other people feel like I do, not mindset or anything else. I like that you just say how you feel, despite knowing it might make others uncomfortable to hear, but it's reality. I genuinely hate asking for help, with ANYTHING, I once pushed myself up a steep hill at my school in my wheelchair, going to first aid for feeling really sick, because I don't like that I can't do basic things that others can. It's nice to know it's not just me who is so stubborn as to inflict more pain and problems on myself than to be willing to get help.
I really, really relate to this. My disability is a little different in that I am chronically ill, but yeah. Understanding that the world is not built with people like me in mind and that people like me are largely forgotten or swept to the side. In the United States disability assistance is so low that most people live below the poverty line, and there isn't much you can do to make and save money that won't kick you off those benefits. You can't even get married without risking it. I feel like I'm not allowed to live a full life and be happy and I think what's most painful about that is to some people in power, that is by design, because people like me are seen as leeches and less worthy. If I had one message to the ablebodied out there, it's to look around you and realize the life that many of us have to live. It sounds ridiculous but all I want in life is to be able to work a regular shitty job, have my own tiny apartment, and have enough money to feed myself and keep myself healthy. That's what everyone else around me does, and rightfully they complain about how much it sucks, but I can't even do that. It's really, really scary.
With you 💯. I have MS and am trying to get on disability right now. But even after I get it, I likely won't have enough to live on. I worked 2 jobs most of my life. I did Silicon Valley and international tech jobs. But the medical bills destroyed both my family and my retirement funds. There's no way to save enough for that kind of financial hit. I'm sorry for your situation and for all those others like us out there who are suffering through this. Makes me so angry 😡
I've been born disabled and I'm having a lot of trouble with chronic pain. My parents have always encouraged me to voice my frustration with the whole siuation. They've given me space when I just wanted to scream into my pillow. And I think giving yourself those moments is very important. Let your anger, frustration and pain out, it's ok to feel about this situation like that. I hate the mindset that you always have to be positive about your disability. It's just toxic and not helpful at all. Everyone is allowed to feel bad sometimes. I'm very happy you talked about this topic, cause I think we need to talk a lot more about it. You're not a "bad disabled person" because you're sometimes sad or angry about it.
I know those feels. I'm not missing a limb, but my disability is nerve damage in both legs caused by quadruple hernia surgery after being attacked by a former student having a meltdown (I used to be a special education teacher working with very challenging students; I don't blame the student, they don't have the intellectual capability to know what they were doing). I have numbness in both legs, pain in both, and the pain is often severe in the right. I went from rock climbing, swordfighting with a medieval recreation group for more than two decades, and so on, to walking with a cane and stairs being my enemy. The worst part was finding work after leaving teaching. We like to say that discrimination isn't real but that's a load of BS. I had so many interviews that they would literally just stare at my cane. Several where they asked me if I was capable of physically doing the work. Like yeah, it's a call center. Some days you just want to fight the world, and that's okay. It's part of the healing process. I've (slowly, and often painfully) learned that it's okay to ask for help when you need it. How many times did I make a fool out of myself trying to carry more groceries in than I should with one arm (remember, cane), limping, and fumbling to open the screen door, while telling my roommates, "No, I've got it." No, I didn't have it, but my pride wanted to think I did, when I should have just asked for help or accepted it when offered (or even carried less bags, but that's something my pride hasn't *quite* accepted yet; everything's a work in progress). The point is, we're human. We fall down. The falling is easy, the getting back up, it takes steps, and that's okay.
I don't know where admitting things suck sometimes has become a "no, no".The fact that you let out your frustration in a locked car says something about you-you weren't looking for sympathy or saying "poor me". You were just fed up with the situation. You really are a positive person from what I can tell (this is the only time I've seen you talk) but even positive people can have down-times and that's okay! Being young and strong makes it even a little tougher because you feel invincible in that stage of life. I'm impressed that you didn't let the jerks parking in those spaces get to you. Thanks for sharing your frustrations...especially from a suitcase. That was awesome.
Showed this video to my wife, and she would have been happy to offer the kind of help she would have gladly taken. She's an LEO and writing disabled parking violation tickets is one of her favorite things to do at work. Im with you though, I have no clue where this perception comes from. We aren't always ok, and sometimes the world sucks. Call it for what it is, why try and sugar coat the damn thing?
"Im supposed to say whatever TF I want" should be the title. Right on! I'm sending all the love. It so good that you speaks from the heart and everything is true.
My name is Randal Eib (Randy) Due to diabetes last October I became an amputee below the knee, found your site on UA-cam and have greatly appreciated all you have shared. Yes being an amputee does come with limitations but as with you and other positive ones it has helped me greatly to press forward with my life even though I am an elderly one (76 yes old) with numerous health conditions and many serious hospitalization. Thank you for being real. Randy
Randy, from one diabetic to another I just to say kudos to you for hanging in there. I hope your days spent in the hospital go well for you and that you only have the best of help from all who are there because they care. Sorry to hear about your leg, and my your other complications find a way to be well managed. Stay strong, at 76 I would say you have done well in life while living with diabetes!!
Your transparency is heart wrenching 💔 thank you for being your struggles to the for front more awareness is definitely needed it is realistic not neediness or weaknesses. Thanks for sharing 👍 😊 people care and most importantly will be supportive if accepted. Blessings 🙏
Keep fighting! No need to be ashamed, it's perfectly normal to lose your cool. I'm glad you know that. You are amazing and l loved this video. Nice to meet you.
I really needed to hear this. As an artist with chronic pain, it can be very easy to guilt yourself for not being even more productive and creative as a result- pain can be an important inspiration, and art a useful outlet- it can be a blessing that grants you work and money to pay for all the extra medical crap and it on a good day you "wouldn't have it any other way".... but there are days, months, years where you are struggling just to stay alive, eat, sleep, work....and you look over at an able bodied colleague who is so productive.....and you imagine how much more you would do if you only could.... and when they look back- they see how tired we are, they think we want or need rest- understandable- but I don't think they realize what we want so badly, is to work harder. It can make me dislike myself, feel like some insecure, envious and embittered little person.
In my experience, one of the most validating things that I can do when it comes to talking to people who struggle with disability (in my case, talking to my sister with depression) is to express my sympathy in the form of communicating how awful something sounds, and following it up with expressing how grateful I am for not having to experience that, becease I would hate it. I've said something along the lines of "Damn, that sounds truely terrible. I cannot imagine what that feels like. Literally trying to do it is like trying to imagine death; my brain just rejects how awful that is, and I must say that I'm grateful I don't need to experience that, and really hate that it's something you deal with.". I don't know if that's what anybody else here likes or wants to hear, or feels like they need to hear, but I just thought I'd say what I've done that's helped disabled persons in my life.
Uhhhh yeah I’d say that is a SHARP “your mileage may vary” and you need to reserve that only for people you know well, who like it. To me that sounds like you’re telling me I should kill myself.
I was retired early from the Army with a 90% disability rating. I totally understand what your saying. Speaking your truth about being frustrated doesn’t make you a bad person. It makes you human. I used to get so frustrated it the beginning because I couldn’t do the things that’s made me happy…at first. I am also fiercely independent and I was mad at first. Overtime I realized I could do a lot more then I realized. It just took learning how to adapt. You’ll get there. It’s totally ok to get angry and scream 😱 I feel the most important part of my journey was simply…when you fall…get back up. Getting back up can sometimes be the hardest thing that day, but I had to do it. Resilience was the key to success for me.
I feel like everyone has struggles like this once in a while... As a short person, I often feel frustration at not being able to reach things. As a stubborn and independent person, I also don't like asking for help. Your feelings are valid and shared, Jo!! 💕
The thing is though, for disabled people it's not once in a while, it's every freakin day. I'm short too so that's a bit annoying, but it's entirely different from genuine access issue that say a little person has, where the lack of accessibility means they can't shop without help or cook in a kitchen without aids. When your looking forward to going out with friends, and you can't actually get in the building because wheelchair access is not existant, that's more than a little struggle once in a while. Jo was expressing a deep frustration and anger that she feels and yes it's very valid! But unfortunately your trying to understand from your own perspective and missing the point invalidates your telling Jo her feelings are valid... You (likely unintentionally) completely dismissed the validity of her frustration and anger at the situation, by saying as an able bodied person it's the same as everyone's occasional inconvenience s, and that asking for help as an average short person is the same as asking for help as a disabled person. It's not the same, please rewatch and try to see this from Jo's perspective. Please look up ableism and learn and expand your understanding of why commenting in this way is exactly one of the things Jo was saying was harmful (well intentioned but still ableist and harmful) Thanks ❤️
@@kristelfae5054 I appreciate your perspective. I absolutely do not mean to dismiss anyone's struggles. I only wanted to suggest that I sympathize, but I know I absolutely do not share the experience. I'm sorry if it came across otherwise.
Everyone with any disability feels this way. I have the same issue of either not asking for help or (no thanks autism) when I do it's because I have disintegrated to my childhood emotional mindset. Add in everything else plus being 55 and not getting diagnosised till age 53.. Lets just say most days I am not alright and don't know how to tell people that without getting the reactions you described. As long as I can stay " thinking " and mostly logical i'm functional, but the moment emotions take over I am lost. sighs. One thing to remember, everyone, even the temporarily-abled (term for those that have no current disabilities) needs help time to time. And even more important, emotional release ( be it a scream or a cuddle or whatever ) is something everyone goes through as well. So on all counts, you have nothing to be ashamed of. Thank you for sharing this story.
I'm also disabled and I agree with you and its hard especially when people look at you in a judgmental manner I have been living like this for 11 years and I regularly gist brake down
Thank you for sharing this as it does always seem like you are bubbly and happy ALL the time, and I know you don't share everything here but I do love your channel and it brings me joy. I get so frustrated with having to be in my wheelchair all the time and there don't seem to be ramps or flat sections in a walkway/ sidewalk for you to either cross the street or get into shops. Another thing I hate about being in a wheelchair is not every shop has aisles wide enough for me to get in and these are places I used to love shopping at as they fill all of the stores with awesome stuff that "you just cannot live without", hehehehe, not really but hey it is fun to see it all on the verge of tumbling over with just a breath. I miss the people that run or own the shops because I just cannot anymore :(. I guess I am lucky where I live though, most of the time people are kind and helpful and follow me around the store ( I usually go when the shops have barely anyone in them so I guess I keep them busy by helping me. I DO have to say though, I love my chair too as I can be more independent at home and only ask people to help if the product is too high for me. My pain level is considerably less when I don't have to stand or walk anywhere because I have bone and muscle weakness and I broke both my legs while fainting one day because I refused to use a chair, what was I thinking? AND the chair makes carrying my O2 easier, I just hang the canister on my handles behind me. I am usually a very happy person like you and like to find the good in everything including all of my equipment, they are just part of who I am and I like me. :) Have a wonderful day everyone that reads this, you got this, you can do anything your heart desires just a little differently. Hugs to anyone who needs one cause "this too shall pass".
![The Toughest Thing After Amputation is NOT What You'd Expect! [CC]](http://i.ytimg.com/vi/OZgYUCaDnfk/mqdefault.jpg)
![The Toughest Thing After Amputation is NOT What You'd Expect! [CC]](/img/tr.png)
![Dear Tia: This Needs to Stop (@thetiabeestokes ) [CC]](http://i.ytimg.com/vi/oDMxRWm3VKw/mqdefault.jpg)
"Sometimes it's ok to grab your steering wheel, lock your doors and scream sometimes. It's ok to not be ok"
I'm not disabled and I *felt* that. You are incredibly strong!
I've done this.
One of the hardest things I ever had to hear from a therapist was, "Yes, you've accepted your diagnosis. Now you need to accept your limitions." She was right, of course, 15+ years later, I still have moments where I kick and scream about how much I f*cking HATE my "New Normal". Just discovered you. You're fabulous and I find myself grinning about how often I'm nodding. 😁
Thank you for that post. This resonates sooo much with me, as I'm still struggling with this myself.
@@AleaumeAnders Oh I'm so glad! Especially because I just had a rough couple of days with anxiety. So your comment on my comment helped get me moving today. Knowing that we aren't alone really helps!
I am now dealing with the worsening ringing in my ears that had come about due to my being in the Army and being around loud explosive noises. I am a Vietnam veteran, and Yes, there are many of us around though the current crop of war heroes are the boys and girls from Iraq and Afghanistan. We were hated, and I will never forget coming into the airport and having a guy spit on me. With that all aside, I hate the new normal I am now paying for the Ranger training and hard knocks that I have taken over the years, and my body does not do what it used to do.
@@garyjohnson8150 Thank you for your service, Sir!
Thank you for your comments. Still struggle w/ limitations and admitting I have them. Geez some days are so hard all I can do is cry and that actually helps.
I've been learning that sometimes you just have to LET yourself feel the bad stuff. It's healthy to scream, be angry, cry, be sad, frustrated. It only harms ourselves to bottle that up
I'm saying I agree with Jo 👍 be bloody angry and telling people why is definitely something more people should talk about
I've learned that to and to talk it out I was holding things in which made things harder because no one knew and my mom knew but she would push me to do things I couldn't do because it would make things worse
One of the things I’ve learned is that it’s helpful to me to make myself (or allow myself to feel the downs of my life. It’s the only way I can live my life. If I cover those bad stuff with crutches such as drugs, false happy happy, shopping to avoid I just end up not me.
Oh lord I felt this in my soul! I've been the one to think I've "dealt" with stuff, but in reality I secretly cried myself to sleep and then bottled it all up and do the pretending with a mask on. But it is truly soul destroying, at least it was for me anyway. I've learnt that for as hard and painful it is to feel and face some things, not doing it just seems to eventually come back and smack you in the face twice as hard x
Our society as a whole puts too much emphasis on self-sufficiency. Asking for help doesn't mean you're helpless. It means you're part of society. Everybody needs help sometimes; some people need more help than others, but that's not a flaw, that's why we live in a community: To help each other.
and then there are people like me who dont rely on others at all and live in the middle of no were to avoid everyone
@@0Heeroyuy01
And yet you're using the internet which is maintained by people who are not you, using a computer which you presumably did not manufacture the parts of yourself. Did you build your own house? Do you grow and hunt all of your own food? Did you make your own clothes? Dig your own well? The idolization of self-sufficiency lends to missing the very intimate ways in which we all rely on each other implicitly just by continuing to exist in society.
Were a social species after all, needing others its pretty hardcoded in there.
And I say that as someone who knows few things that stress them more than dealing with other people.
@@badlydrawnturtle8484 i see you want to be a smart ass you know dame well what i was talking about.
i dont get food delivered, ext.
Other volunteer leaders: "I'm in charge. Do what I say without question."
Me as a volunteer leader: "Sure I've done this a long time, but I can't do this without your help. Let's work together as a team and I'll teach you what I know."
When ya need to get things done, the ego gets in the way. We gotta learn when to put it aside.
As disabled people, we are expected to be positive and grateful all the time. The reality is that living in an able bodied world can seriously suck sometimes. I still struggle with my internalized ableism and stubbornness about asking for help, or using mobility aids.
Please don't feel that you have to be positive and perky all the time. Able bodied people need to see what we deal with.
Fuck positive and grateful and thank you for your service. I would not do it again. An idiot population that would be led about by a corrupt dementia patient and his cronies deserve nothing.
I always feel the need to mask pain and fake being happy socially...
Ableism doesn’t exist.
@@ChrisPage68 Society is run for a non disabled agenda,on a physical and emotions level.
It's okay to be angry. I'm so over being ashamed of having feelings.
To paraphrase John Green: Often times the hardest things we go through, teach us lessons. But often times those lessons could be taught in less painful ways. I think that it is totally ok to not be happy with the crap you have been subjected to as a human on earth.
Another Nerdfighter? 👀
@@eli3163 Yes 🙋♀️
Is this from a video?
@@WhyHelloShelby maybe. I have heard something similar on DHaJ and it was in TAR. Maybe meningitis?
i think a more positive attitude is to be happy you're alive and work hard to make it even better for as many as you can. I don't have time to be negative, too busy making it better for those who need help the most (people with multiple disabilities who are often forgotten).
I'm starting to look at my wheelchair like I do my glasses. A tool I use to level the playing field. Facing that has helped me see antidepressants (and any other MH medicine) as a chemical equivalent of a pair of glasses. They are a pain in the ass sometimes, but they level the playing field.
Love jo in a suitcase . Personally I love getting in suitcases
I literally love that the first bit of the video is just Jo fully fitting in the suitcase, made my morning 😊 looks super fun to do!!
Are you a cat?
A Car That Fits in a Suitcase | The Oprah Winfrey Show | Oprah Winfrey Network: ua-cam.com/video/hzpk08KTquk/v-deo.html
You appear to be an honest person with good working knowledge of yourself.
So many of us don't have a world we're meant to live in. And you are trying to figure it out and to make yourself a better person. Where as others,without the same type of injury or any injury seem not to grasp the fact that you/they should learn something from your/their feelings. Something that will improve them, make them understand themselves and have empathy for others.
Have you thought about being a speech writer. You are VERY articulate 😄
@@connieboozer9857 I think your comment ended up in the wrong thread
This was so genuine and it felt so refreshing to listen to you just be open about what you're dealing with. You're super strong and sometimes suffering feels super unfair.
I am autistic. Most of the time, I can honestly say that I’d never change that, and that I am glad to be autistic. Sometimes though, I am filled with deep resentment. Resentment of being different and disabled. Sometimes I wish I could just easily speak, make jokes, make friends, respond to people, look at people, tolerate being in a store, etc etc. Sometimes I wish I didn’t have to work so hard for a change.
Hey, my fellow autistic. I am autistic too, and you're not alone in this. I was diagnosed late, at 18, and don't even have my formal diagnosis on paper yet (pandemic sucks), and I think that because the ASD went years unnoticed, I feel it too. It is like I am autistic enough to struggle, but not autistic enough to ask for help or need accommodations. I struggled with loneliness at school and college, at family meetings, in the mall, going out, living with my family, literally every single moment I'm awake. It's tough, but think that if you weren't autistic, you wouldn't be you. It helps me a little bit. I really like to say I AM rather than i have, because it is a part of me I can't erase, and it remembers me that if I am who I am today, that's because of it. At the end of the day, I know that somewhere there'll be a place where I am accepted and respected, for example my college, where by fate they are used to have autistic students and will be able to help me through when we go back to in-person hopefully in 2022. You just have to find a place or someone who makes you feel comfortable and grab it, because they're worth it to be around
Beautifully spoken, Alex and Ana! I am not autistic, but I do have several friends who are on the spectrum, so I don't know how it feels from the inside. I do know that I would not give up my friendship with them for love nor money! They are a great and beautiful addition to my life and my life is so much better for having them in it!
They have various abilities but that's part of why I love them!
Keep your heads up and I sincerely hope that you find friends that are good to you and treat you well! And maybe they'll find out what treasures you are!✌💖🌞
I have not been diagnosed with anything yet but my brother is diagnosed as autistic and my therapist has suspicions about me. No matter the diagnosis, what we both struggle with, my brother and I, is how much people try to over-analyse things, can not accept doubt, and how often people give unsollicitated advice. In my case, I recently broke up with a man that was my boyfriend for more than 5 years. One of the main reasons why, is that he considered my lack of social skills something that had to be cured by a therapist, because he is certain that a therapist can teach me social cues and like make me reherse situations until I know how to act. He wasn't able to consider that there are things that can't be cured, and other that can, but should not necessarily be cured. We had countless arguments over that and one point that still makes me hurt is that this man accepts the way my brother acts without a problem, he doesn't care about the way I act now that we are just buddies, but he was not able to accept my behaviour when I was his girlfriend.
@@trekadouble757 I don't understand why you're still buddies with this man.
Think I'm autistic (not been diagnosed, but I've never asked to be diagnosed), but I don't really know what I could 'do' for it. I'm academically gifted and well behaved, so I was never a 'problem child', but at the same time I've always been treated as 'difficult'. From having to leave the only wedding I've ever been to early because I felt physically sick (instantly felt better in the carpark), to not being able to hold a casual conversation with literally anyone. My mum always calls me 'shy' and 'eccentric', because I don't have friends, and I obsess over niche topics like the impact of grand architecture on the socio-economic political landscape of ancient Minoa. But what am I suppose to 'do' about that? I can will myself to stay at parties and act happy so that people like me more, and I can listen to inane subjects going "uhu, uhu", but I'd be just as depressed and anxious (actual diagnoses) than if I did none of those things.
Honestly, I feel this even though I am somebody with a moderate to severe anxiety disorder, PTSD, and autism, and am not an amputee. That is part of why I follow you - as I know the feelings you go through, yet try to remain positive. You may or may not remember me (I had bought your Everyone Deserves A Limb sweatshirt), but just know you 100% have my support through all of the emotions you feel.
Maybe I’m just a jerk but after the airport said they’d take an hour I would have told them to call a tow truck on one (preferably all) of the vehicles in disabled parking that didn’t have a placard/plate🤷♀️. I know it’s not the point of the video but if I’m gonna be inconvenienced then im gonna inconvenience EVERYONE else who deserves it😂
I loved the video Jo and it’s amazing that your talking about these “hard” things that people don’t talk about enough!
That's an amazing response, actually.
No like legit if there's people without placards in the disabled spots and you need one, then reporting them so you can use a spot is helping the system work for you. It doesn't need to be vindictive. You're also helping the next person who needs a spot.
I know that sometimes people who need a spot won't have a placard for a variety of reasons, but they knew the risks when they chose to park there rather than calling to see if there's another solution
Its legit. As long as it is a properly marked handicap spot, you can call traffic enforcement and they will get a ticket && get towed for it.
Yes!!!
You're absolutely right !
This video was suggested to me by UA-cam. I’m really impressed with how well you talk. It’s as though you had scripted it all and are reading it off a teleprompter. Very well presented.
She’s like motivational speaker 🔈 without even trying.. Everyone has there awful days it’s nice to show that it’s okay to not be okay all time!!! Jo does a great job of expressing all the emotions it’s very refreshing!!!
Jo, It’s your channel, you say what you wanna say.. my wife has a saying: “Not everyday is going to be pretty”.
This is 100% our reality and you are 100% entitled to your feelings and I’m glad you shared this.
I love how honest with emotions you are. Integrity to who you are is essential to being you. As a former police officer I paid close attention to the handicap parking and enforced it fairly and sternly. Upsets me when non disabled park in them since usually there are just not enough for the need. Good on you for being who you are and sharing it with us.
I DESPISE THOSE people (jackasses; sorry but I had to..) who take the spots without having a need to be there/even a permit saying they "belong" there...
You are definetely allowed to feel that way, and or say whatever you need to for your own mental/physical health.
Agreed on needing help too, I also have trouble at times accepting help from those around me too
Agree!!! And I feel like it is ok to admit that you are not ok all the time. I'm also 2 years in and I hate the sympathy and toughen up speech, sometimes I just want someone to listen.
Reminder if they have a permit, they do need it. You may not see their disability (like if Jo was wearing pants and you couldn't see her prosthetic) plenty of chronic illness and disabilities don't "look legitimate" when judging from an unknowing lens. Those who don't have a permit whole other story! That makes me rage!!
@@kristelfae5054 my point precisely... I meant to say those people who who park there without a pass... My bad
@@notapplicable2636 I wondered if I'd read it wrong or you'd slightly worded it differently, sorry to rant at you! ❤️ Yes I agree!
I love my mom, but she has a handi-cap tag that she doesn't always need. Story is, she got it when my dad was sick and dying and kept it after he died. About the same time as he was on his way to the other side, she had a knee replacement. Now the knee is over a year healed and she can move pretty well until her other issues flare up with her nervous system condition. My issue is that she will take a handi-cap spot when she is fresh and not in pain and I will argue with me when I offer to drop her off at the door and go get the car when leaving like a valet to keep from taking up a space, especially at places like the hospital. Places like Wal-Mart on a busy saturday is a free for all, but the hospital especially shoudl be reserved for those who are in dire need of it, not just a arthritic knee or swollen feet.... and especially when your daughter is offering to drive you around like you're the POTUS. I love her... but it is so embarasing.
I hear you. I’m autistic, and the world can be really confusing and it can be really hard doing some basic shit.
Right now I’m trying to do job applications, and it feels like the whole process has been designed with the specific goal of being incomprehensible to me. I now that’s not the case, it’s a by product of how I function, but it sucks when you really want a job, i just feel like me and the process are incompatible.
And while I appreciate the effort of those around me, they aren’t actually helping. They’re telling me I need to pull this out and do this, or that. And I’m like, “what are you talking about? That doesn’t make any sense”
Damn this is tough.
As someone that also has a disability, several if I’m being honest, I can really relate to everything you’re saying. In my experience people have treated me asking for help or expressing negative feelings as attention seeking and being lazy. Which only has served to make me feel worse about all of my disabilities. I can not think of a single positive thing that they have brought, no matter how hard I try. Recent experiences have shown me that I hate them and if I could get rid of them and be “normal” I would. All that to say, you’re not alone in feeling this way.
Honesty is a much undervalued quality. I thank you for your honesty; it’s refreshing and helpful to me.
Disabled from spinal cord tumor- I’m trying to be brave enough to not just stay home. The world is NOT built for us or often even accommodating. Thank you! ❤️
Good for you~ Just be careful what with this chaos about.
Hey Kim, I had a benign tumor removed from my spinal cord about 5 years ago. I was quite active, mountain climbing, etc and now I force myself daily to perform perfunctory tasks. I depend more on GOd now and He gives me the strength to endure and achieve. Never give up! We still have it much better than the disabled in third world countries which has little or no infrastructure to accommodate those with less capacity. I was getting my physical therapy in Peru 6 months yearly due to financial restraints but excellent attention and efficacy.
You hit the nail on the head! My 28 years of chronic pain and fatigue is not a visible disability (which leads to misunderstanding and judgement from others, perpetuating the “over do it” cycle....ugh), but has limited me in so many ways. That leads to me doing WAY too much, trying to prove my independence and because of my stubbornness to not let my health issues limit me. I’m learning more and more, at almost age 42, that yes, I’m amazing, and have achieved amazing things, but in trying to “do it all,” it takes a toll on me, and those around me. So, I’m getting better at asking for help, and saying “no.” Still not great, but better. I TOTALLY hear you in your raw emotion. We, as people (dealing with real life circumstances and emotions), don’t always have to go around throwing confetti and passing out cupcakes. Sometimes life just sucks, and we’re allowed to stop and have a tantrum, and then keep moving forward. In fact, I think that is NEEDED, from time to time. You ROCK! Thank you!!!!!
Thank you thank you thank you so much for sharing this story. I have no physical disability but struggle with mental illness and some days just a tiny insignificant thing can break me. I know exactly how you felt and it is so helpful to hear someone else express similar feelings! Please keep being brave enough to share your stories! Thank you Jo! ❤️
THAAAAAAAANK YOOOOOOOUUUUUUUUUUUUUUUUU!!!!!!!! THIS GOES FOR ALL KINDS OF DISABILITIES AND IM TIRED OF PEOPLE PRETENDING THAT WE LIVE IN A WORLD THAT IS BUILT FOR US!!!
36 years into life as a disabled person and I still get pissed when I think of how the world isn’t built for people like me or even worse that some people don’t realize or care! Screw anyone that tells you to toughen up or that you’re not allowed to be mad at your disability, I’m one of those weirdos that actually loves my disability and consider it a source of pride and I still yell at my body and brain sometimes! You’re an amazing role model for our community and am so grateful I found you!
Wow! I have had the just deal with it, most my life. It's so refreshing to hear living with a disability is difficult and some days it's honestly too much. And it's okay to say that! I have cerebral palsy by the way. You think being born like this I would learn to adapt lol 😆 but the older I get the harder it is to just be able to walk.
I was also born with my physical disabilities. As I age, my limitations have increased. Each time they have increased, I have to go through the process of accepting them so I can continue to truly live my life. COPD from asthma, needing oxygen supplementation, and chronic fatigue were my most recent challenges. And I'm in physical therapy again because when I decided to start walking with my rollator again-just 220 feet around my apartment courtyard-I injured myself. Sigh. I'm rebuilding core abdominal and gluteal muscles now so maybe I can walk for exercise again. And sing well whenever church choir can safely meet again.
Never apologize for being you. And that scream is universal.
💚👽💚
Hey Jo
As a blind person there are days when I am happy and I feel like being disabled takes my life in so many wonderful ways and I have met so many wonderful people because of it. But there are days when I feel STUCK in the biggest rut, held here by my disability. You are right, the world is not meant for us. Sometimes its hard, and sometimes it gets easier. I think its important that you learn to ask for help. Asking for help does not make you less independant, in fact it makes you more so, because then situations like this become less stressful, less anxiety inducing and are over much quicker so you can get on with your day. But you will learn that I think in time, as I have. If you need to talk you can talk to me but I hope things get better for you. Love from the UK.
Thank you, Jo!!! Thank you for talking about the struggle of living in a world that wasn't built for you.
Body positivity is amazing, but it's super shallow if we're not acknowledging our struggles too.
As someone with a disability, the best thing anyone can say to me (instead of "I'm sorry") is encourgement: "you can do it, keep going, don't stop now!"
ps: I hate asking for help as well
I hate it when people treat me like an old man who needs a cane regardless of the fact that I'm an old man who occasionally needs a cane.
As a young woman who sometimes needs a cane I understand how you feel
I use a cane only when I go out, and sometimes don't actually use it. I've been told I don't really need it. Yes, I do. Not only is walking more than a few feet painful, but I can NOT get up to my second floor apartment without it. So I have to carry it.
I hate it when old men treat me like I'm belittling them when I offer them assistance instead of seeing a person trying to help lighten their hardship.
@@sleepup7931 You are a good Person . However there is such a thing as "Unwanted Help" . I usually try a positive statement like "ya got things under control my friend?" and I'm ready to jump to the assistance of anybody who hints at needing help. Been there Done that .
@@sleepup7931 "lighten their hardship".... do you see what you did there?
My wife has anxiety. There are times it gets bad. Today for instance she was screaming at me about all the small things bothering her. It felt like she was mad at me. But she wasn't. So I listened to her. Told her I loved her and even though it may not help saying it will be ok I told her everything will work out or we will make it work out. Shes worked over 65 hours this last week. Makes sence everything will get to her. I asked her if she needed anything and she got upset. So I helped. I gathered her work clothes and what she needed fornher meeting and we went on our way. The drive helped her calm down.
I dont know anything about your husband but I'm assuming he does the same for you.
Jo, thank you so much for posting this video and telling your story! I'm not an amputee, but as someone who is disabled (was born with left clubfoot and have osteoarthritis in my left ankle) I know EXACTLY what you're saying. I've had my able-bodied family and friends always give me the lovely, positive mantra of "It could always be worse and you've seen worse!", but thanks to years of therapy, I've learned being frustrated with my disability is okay! I so appreciate your honesty and just saying, all in all, that "it's okay to not be okay even when you're not okay with your disability sometimes". Take care Jo and take it easy!
Omg thank you Joe. You’ve got me in tears right now. To know that I’m not the only one out here who feels this way. Or has days where I just don’t want to get out of the bed much less anything else. I’ve been watching you for a short time now. My cousin lead me to you cause she saw my struggles. And how I hate sympathy. Or some one telling me to suck it up and move on. So now when I get those moments. I lock myself in my rv where I live and don’t let anyone see me get like this anymore. To see you explain just how I feel is overwhelming, but healing at the same time. Thank you for being you and speaking out! I just love you for that!!!🥰🌹
I am so glad you spoke out about this. I have been having this same issue. I have hEDS and never look disabled. It’s really fucking hard. Thank you! Weakness is so important to talk about. Today, I may scream in my car too.
Also have hEDS (among other disorders), get a cane. It's silly, and stupid and screwed up. But a simple cane is enough to tell most people you have something going on. That's enough to break the " invisible disability " barrier. It won't stop you from having to explain things to someone, but at lest they can " see " something is going on.
I'm lucky, I may have hEDS but it's fairly mild for most part. Sure constant pain and sub-locations aren't uncommon. at least the pain is usually what I can handle without drugs and I don't get serious dislocations. But the rest of the list is hard to deal with every day. Autism, ADHD, PTSD, Depression and both general and social anxiety. And none of it is " visible " so without the cane it is a constant battle to get people to recognize I really am disabled. Still waiting on federal disability, hearing late fall. Wish me luck. Don't think I can handle another year on just food stamps and GA.
@@loganskiwyse7823 I’ve honestly been thinking about getting a forearm crutch. They work better for my lifestyle. Plus a labral tear so I guess I have that. I also have a lot of mental health stuff. ADHD, PTSD, depression, anxiety, borderline personality. I hide it well.
@@elaboratelizard Smiles. I used to hide it better long before the diagnosis. Last few decades ended that.
Weird fact, Autism and hEDS are comorbidity and Autism with ADHD affects roughly 65% of people with Autism. Most doctors are not equipped to diagnosis Autism if it's in the Asperger end. This is doubly true in females, where even basic Autism is often missed. Considering the overlaps, it might (or may not) be worth investigating with a clinic that specializes in testing for Autism. That's what I ended up doing, sadly they where not equipped to help with any of this beyond that at my age. Kids yes, but adults in my age range where outside their programs or skill set.
@@loganskiwyse7823 I’ve actually been tested twice. Because I started speaking early they decided I am not. I honestly think I am. But I am too worried with my parents because my brother is and I’m not his level.
@@elaboratelizard ASD is a huge spectrum and speaking early is not a indicator if you are " high functioning " and still have Autism. In fact it can be a indicator you are Autistic and on the Asperger end of it.
I am serious about the specialty clinic. Try ANNE, see if they can point you to the a higher quality testing location. Getting training to deal with how your Autism affects you and ways to work around that is incredibly important while your young.
Because I was not diagnosed, and received no training or support I am at the point where every time I fall asleep I don't want to ever wake again. If I had gotten what I needed as a child, I suspect that would not be the case.
Also, be aware not all states recognize Autism by the same standards. I can't speak for your state, but it may not be possible to get a diagnosis even if you have it because of the limits placed on doctors by politicians.
Thank you for sharing this. Some of us that have that struggle on the inside and isn't physically visible, we can really relate. I feel seen & heard. Thank you. I've definitely had this days. Sending you all the strength & love in the world.
See - struggle should not be invisible. That goes for everyone, and especially in this context for all of us in the disabled community. The reason the world is not built for accessibility is because those who are designing it are not seeing what is needed, or if they are, they aren't seeing how important it is that we get what we need and then actually endeavoring to make it happen. I really don't understand how humans became so avoidant of communing with struggle and hardship to the point that now people just want to believe that everything is fine and anyone struggling is doing so iNsPiRaTiOnAlLy. Seriously, how did we get here?
Anyway, you matter and are valid and that includes the rage-quit days, too. I for one really need to see other people in my community talk about their struggles, as it is so healing to know that I am not alone in mine. Please keep sharing (and rest that leg!).
I hate to say it but most individuals won't accept anything outside their direct experience. I can not say how many times I have heard or read that all the risks of covid are made up or fabricated because no one they know had any serious consequences. And I can not say how many stories I have read of people that lost multiple family members, healthy teens, or direct serious consequences as well. It's easier to " believe " something if you experience it for most people, anything else is too abstract for them to step outside their own comfort zone and " see ".
@@loganskiwyse7823 Oh, you are exactly right. This entire year has been a cycle of grief and loss for me, and I'm still seeing people in my city who deny anything ever happened. It's infuriating and makes me feel hopeless at points. While I know people are somehow doing it, I truly just don't understand how you could live through this last 16 months and NOT see the grim reality of what's been going on.
And even when people DO have those direct experiences sometimes, as you've said, they still disbelieve or deny what is right in front of them. No matter what I do on my end, I cannot "make" someone have more compassion or empathy or be capable of imagining others complexly. I just want to also combat the idea that because certain individuals won't see me or my experiences, that I should therefore think twice before I share them (even if they aren't heard by some folks, they will be heard by others). Sharing your story is a radical act, even if the audience is small.
@@EmmaCreatively Agreed, completely.
Even if it wasn't seen as " radical " to be honest about our difficulties within our various disability communities it can be just as hard to find people that will listen.
I'm a old fart, and only recently diagnosised with most of my disorders. Lost all family and friends long ago. Finding people to share my experiences with isn't much of a option. The best I can do is relate some of it here(online) or try to give better advice then I ever received to others.
Sometimes knowing I helped or shared stories with others helps me feel better. Sometimes.
Inaccessibility fuels a horrible cycle it starts with inaccessible design. Then few disabled people come because it’s inaccessible. Then changes aren’t made because “oh disabled people don’t come here so we don’t need to change”. Repeats over and over and over
You are amazing: transparent, honest, genuine..a breath of fresh air. THANK YOU!
all the feelings you expressed seem completely reasonable and really any way you feel should be valid. if someone feels like something like an amputation is genuinely one of the best things thats happened to them, thats valid but if someone doesn't feel that and feels like its something neutral or something bad or anything in between thats also completely valid as well.
You sense a lot of sense. God Bless You
I was having one these days today and I knew I wasn’t the only one that feels like this. But hearing someone put this feeling into words felt so validating. Thank you for posting this. You’re videos really help me feel less alone in this. As someone who is autistic it also helps me be able to voice to my therapist what I’m feeling when I have trouble explaining it myself.
I feel you 100%. Except where my struggles exist is all mental, so invisible if you will. This makes it so hard to convince people that I really am struggling. So I just wanted to say thank you. Because you are really inspiring to me, and I’m sure many many others🌹 thank you again😊
I’m in a similar boat. “I must power through. Good people power through!” Cue me getting incapacitated and/or breaking down. Stupid society insisting “good” disabled people must be more capable than ableds.
Alot of the time "stay positive" sounds like people are trying to say "I don't want to hear about your struggles" and it bothers me alot. I know sometimes it's genuinely people trying to offer advice, but alot of the time it comes off more as "I don't want to hear about your problems" by some people and it's really not okay. I don't have any major physical disabilities but I have a lot of mental health problems that cause problems, and while they're two very different kinds of problems to have (I'm absolutely *not* saying that having ocd etc. Like I do is the same as missing a limb) but I understand that people default to "stay positive! get over it and keep moving!" I think it's good to normalize people opening up about their actual problems.
You're incredibly positive and strong and I love that you come on here and open up to us. I've learned so much about what people with physical disabilities go through (I work in a health center, so I'm glad to have this perspective so I can try to accommodate better to patients with disabilities). You're not obligated to pretend "everything is okay", because sometimes it's not, and that's okay.
The gracious disabled person crap is to please abled people, it’s just another form of ableism (and don’t get me started on inspiration porn). There are plenty of disabled people who feel the way you do (hi 🙋🏻♀️) it’s also never ok for anyone to park in the accessible spaces if you don’t need them.
This! ❤️ ❤️ ❤️
Absolutely all this!!!
Yes this!!! I’ve used disabled parking spots before and it really helped on days when my pain was really bad…
Yeah, it's mostly fake. I've said (and meant) that I'm grateful for the outcome following some of my struggles. That hasn't been typical for me and I doubt it is for most of us.
Scream away my girl! The bs about dealing gracefully with disability 24/7 is just that, bs🐃💩!
If you keep that crap in it will eat you up! Sure, you keep a lot of us in better spirits watching you, but you are a real human, with real feelings!
You are allowed that!
So scream away! Just make sure you bounce back, 'cause we love you!
😡😱😉💖👍
Omg! I so needed to hear this today. I found your channel recently. I had spinal fusion surgery 3 years ago and now use a walker or hiking poles for walking and Effing hate it most days. But I slap on a smile and go to work and carry on with my day satine exactly the things you touched on. Thank you Jo for reminding me that it's okay to still be pissed off at the situation.
I've been disabled my entire life, and even 20 years into this, even as used to my body as I am, I still get angry and wish I didn't have to deal with the BS sometimes. However, I no longer wish I wasn't disabled, and here's why: I realized a couple years ago that my anger was misdirected. I've spent so long being angry at my body for needing help and having limits, when 99% of that isn't my body's fault. The problem is with the ableist society we live in. I've learned it's more constructive (or at least less harmful) to be angry about the fact that the world isn't designed for my body, rather than the fact that my body has limits in a place designed to limit it.
I’ve been disabled my entire life too. When I was young I remember thinking that if everyone was like me. The world would just be made different. I was too afraid to say that to anyone. Because I thought it would be twisted or misunderstood. I’m so glad to find people who would understand me:)
YES YES YES!!! Accessibility is a right! It's justiced to feel anger, because it's unjust, so many of the hard things about life with disability could be minimized by a more accessible world.
The disabled parking was an afterthought vs a priority, or they would create more accessible parking and/or enforce with tickets/warnings so there was not a culture that seemed ok with those without credentials using spaces not for them!
On a larger level, if people better understood disability, beyond just inspiration porn or people to pity, but as people, people who need accessibility, as a civil rights issue,
Life with disability could be soooo much easier!
Society can do better.
It feels like we see moving forward, it's just a slow process and we gotta keep at it! Hope for an accessible future!
This is not going to be popular, but I respectfully feel the need to disagree wholeheartedly. Being angry at the world isn't going to help, and it isn't going to give you peace, its just going to leave you angry. (not that we haven't all felt that anger) This concept that "I wouldn't have it any other way" is just ridiculous! If people would be happier disabled, everyone would disable themselves to "Join in!". And, while yes, accessibility is important... accessible for whom? Every disabled person has different needs and meeting them all is HARD! That doesn't mean we as a society shouldn't try, but it is never going to be perfect for every person. Ok, no one should ever park in a disabled spot unless they have need of it, full stop, no argument there. The bottom line reality is, people with disabilities ARE different. Not just from the able bodied population, but every individual disabled person is different. Life, not matter how much we want it to be, is NOT fair, it never has been, never will be, and furthermore inherently can't be. We all have different struggles, challenges, and problems on any given day. The only way to get past the anger is to accept yourself as you are, the good AND the bad, and live your own life to the fullest. Sorry for the rant, I am just an old lady on a soap box, that has been there and done that with the anger.
Disabled people are always going to be disabled, are always going to have struggles, even when the world is as accessible as possible. Like I know half of our struggles *are* due to society, but we're still disabled even with accommodations.
I'm autistic and ADHD and while many of my struggles would be helped if I had proper accommodations, I'm still going to have these struggles, whether I'm being accommodated for or not.
I'm angry that I have struggles that I can't do anything about, and I'm also angry that the world doesn't accommodate people like me enough. These can co-exist.
@@ethan_the_alien speaking for myself. It depends on what kind of disability you have. I should’ve said that.
Their is nothing that can be described as weakness, when it comes to you.. Scream when you need too.. I am right there with ya..
Those feelings are valid, Jo. I understand. I'm a LBKA myself. If expressing it makes the meat-legged uncomfortable, feck 'em. Please let yourself feel those things; trying to just pretend it's all fine is hurting you.
@@steinistein8611 your legs are both made of meat, yes?
Then you are cordially invited to sit the hell back down.
@@steinistein8611 it's entirely relevant!
You're clutching your pearls because a man with one leg made a crack about the normies. What, do you think that's punching down somehow? I'm really interested to see how you can justify that idea, Karen.
@@steinistein8611 holy mother of false equivalencies, Karen. Do I really have to explain this?
Your counter example is ableism. Period.
Anyone who balks at the completely anodyne "meat legged" is just desperate to get into a fight over some dumb shit.
@@steinistein8611 you're exuding big "all lives matter" energy here.
You don't get to walk into a space for disabled people and condescend to us without consequence.
I thought meat-legged was hilarious (as a person with 4 meat limbs). XD like...oof, that sounds disturbing but it's just true! Kind of like that moment when you realise that there's a skeleton inside you, how spooky.
Once again, well said! Thank you for being honest about your bad days, and how living in a world that wasn't designed for you is exhausting. I'm autistic/ADHD and I feel that too. Some days I'm proud to be who I am, but other days I'm just so tired of how hard it is to be different. I feel like society at large tends to only relate to disabled people as inspirational or tragic, and which group you get lumped into depends on which version of you they happen to see.
Thank you. As a disabled person, thank you for being honest about how much this sucks. The world is definitely challenging for disabled people, and I don’t feel like there are enough of us out there being honest about the struggles and how much it can truly suck. I hope you have good days ahead. Thank you Jo ❤️
Thank you, thank you THANK YOU! for sharing this. I live with rheumatoid arthritis. For the most part I cope, but honestly there are days I too want to scream. There are so many people with disabilities that make a living from being continuously upbeat that it seems like more and more people see that and think that somehow I'm supposed to be grateful for my disability, and how much it must have taught me. I'm with you. I might cope well with my condition, but that doesn't mean that it's fair, or easy, or a blessing. What's worse is that although perfectly normal people are aloud to feel depressed and stressed and frustrated, disabled people are so often made to feel like any day we might feel frustrated, or depressed or like our situation is unjust, these feelings somehow stem from our own weakness of character, like somehow we're supposed to be above the feelings of stress, depression or anxiety that people without disabilities feel everyday. Feeling those emotions doesn't mean your weak, or that you haven't completed your 'journey' as you put it. It makes you normal, and sharing your feelings doesn't mean your winging about your lot in life or that your seeking sympathy it just means your venting frustration, just like it seems most people need to do when they have anything to do with airports, it's normal, and watching this made me feel a little more normal too.
I hear you. I've gone from physically fit to disabled in last 5 months.I was not aware how little the world was designed for those with disabilities until I was disabled myself. Despite following channels like yours before all this. So thank you for sharing. Makes me feel less alone in all this.
And sometimes it's the little frustrations that cause the bucket to overflow. Things pile up.
Just wanted to send you good vibes. I went from being physically fit to overnight crawling on the floor to get to the bathroom. It’s such a hard hard place to be... I’m 3.5 years in... and while you’ll grow to adapt and adjust, life is hard when this situation happens. And it’s okay to acknowledge that and feel that too. 💕
@@dianeandbrad529 thanks Marie. Somedays I'm just angry like why did this happen to me. Doing my best to adjust.
@@jengriffiths8683 how have you been doing?
@@dianeandbrad529 getting by. Started treatment that may help things.
I absolutely love your videos! You’re totally relatable as you’re sitting in your suitcase, unshowered, telling us about how you just want to scream at the top of your lungs. I’m a wheelchair user and there are days I can wear my “I’m only in it for the parking” T-shirt, then there are days like the one you’re describing. Thank you for sharing your experiences and feelings with us. It’s nice to know that there are people out there who understand and relate to what you’re going through even though what we’re going through isn’t exactly the same.
Disabled here with ADHD, Depression, Complex PTSD, Misophonia, etc. Somehow everything you said really hit home for me even though I am luckily very able-bodied. Amazing. Thank you for letting me know I'm not the only one screaming with frustration.
As a Chronic pain warrior with Pain in both legs aswell as dysfunction in my spine and elsewhere, thankyou for your honesty and vulnerability. You are not alone. You aren't the only person who gets frustrated with your limitations.
Love the suitcase recording booth. As for the rant, good for you. We all need to rant from time to time. As someone who is currently temporarily-abled, the few times when my body has refused to do what it normally does drive home just how poorly our world is designed for the disabled.
Like the time where my shoulder just... froze... for nearly a year.
I was born paralyzed and turned 40 in March and have never walked in my life and this resonated with me so much! You don't need to put on a brave face if you don't feel it! Own your truth! I'm just starting to learn that myself!
YES! Anger is valid. We hope for a future that's accessible. So much of what makes life with disability hard, are things that *could* be accomadated, in an ideal society... Not solely just by the airport throwing together their best effort as a "nice" effort, but as a society working together to recognize that accessibility is a right!
If there's people regularly parking in disabled parking who aren't displaying proper qualifications, that shows an issue with that system... Maybe they need to look at designs, perhaps there is a need for short term parking spots (and/or enforcement of tickets/warnings)...
But, beyond that, it's an issue, regardless of why, if there aren't enough disabled parking spots. Period.
Society (at least in this socioeconomic context, in the country we are in, generally speaking) has the resources to handle this type of issue.
If all the disabled parking places are being filled with any regularity, that IS upsetting! That means that some disabled people are being denied access! If someone can't park and get into a facility, it doesn't matter how "accessible" that building may or may not be, because some people won't be able to access it if they don't have accessible parking.
Yeah, it's "nice" that the employees offered some kinda sorta "work around", and I'm not faulting them, but the system as a whole failed to provide *appropriate* access.
Even the way that it feels like we all must fit being palpable at all times in public spaces, that's relable, but it's an unfair "box" for anyone to be in... But it makes sense, as do the expected responses, because most main stream media representation of disabled characters is as "inspirational" or as something to pity... Usually there's limited representation of a fully formed, 3 dimensional character, just living their life with disability being just facet of their journey, vs their disability being a plot point.
Even rarer is the part actually played by someone living with disability.
So this all *is* upsetting.
Because yeah, there's aspects of living with disability that suck, full stop.
The pain would be painful regardless.
But you shouldn't have had to be faced with waiting around indefinitely for someone to do a bunch of special ideas to make it kinda sorta more workable or be faced with having significantly more pain (that is entirely avoidable if the facility was *actually* accessible!).
We feel anger over injustice, and that can be a beautiful, amazing, WONDERFUL thing to feel! Anger gives us the passion to fight for what's right.
So you *should* feel angry.
EVERYONE SHOULD FEEL ANGRY ABOUT THIS!
Not just this one particular situation, but at the fact that accessibility is consistently an afterthought.
Think about it.
Imagine if someday, people learned to think about accessibility as the civil rights issue it is!
Imagine if facilities regularly paid attention to the availability of accessible parks the same way they would of any other parking spots.
I'm sure that if standard parking was regularly filling up, there would at least be awareness and plans to improve the issue.
Yet it's just accepted that disabled spots are sometimes all full.
Why is it different?
If it was treated as important, as it *is* important, the issue likely has better solutions. If all accessible parks are regularly filling up, that seems like a clear indication that they should create more accessible parking! They should also figure out why cars without placard/plates are using accessible parks and figure out how to resolve whatever factors lead to that occurring!
Anyways, sorry for the whole long rant, it just got us thinking about it, and it really IS an issue of accessibility, and it's not ok.
The airport, on a high up level (like, the managers and people who make the big decisions etc, not the individuals who were just trying to figure out things on the fly) should learn to pay attention to make sure there's parking for *everyone*. Not everyone would even have been able to accept the attempted improntu "accomadations" you were offered, since there are wheelchair users who cannot transfer out of their chair or just like... There's definitely potential people who they wouldn't have been able to offer that brainstorm to, including people who just can't wait, for whatever reasons.
It's a completely solvable issue though, if they made it a priority to ensure enough accessible parking was available.
We hope for a future where that's the norm.
And you are working to make that future!
So just... Know that you don't have to apologize for getting angry.
It's good.
It just sucks that, on an individual level, it's so hard to be able to channel that anger into solving systemic injustice. But maybe by presenting these ideas to more people, more people will get mad, too. Then real progress can take place!
Thanks for being so brave to share that you get angry, too.
So much of what makes life with disability hard isn't the disability, it's the lack of access, that could be resolved, and it's the isolation of not having people "get it"...
But if everyone could change their thinking to recognize accessibility as a right, it seems like there would be so much less struggle and isolation.
This!! ❤️ ❤️ ❤️
Even more important than just sufficient parking spaces might be sufficient public transit. Not everyone with a disability will be able to own a car or even drive safely!
I truly appreciate your honesty. I've been feeling this feeling exactly and have not been able to shake it. Your words meant so much to me. Thank you. 🙏
As a disabled person, thank you for sharing this.
From the words of South Park. "It's about people getting together and feeling what they need to feel. People need help sorting out their emotions sometimes. And the best thing isn't always quick answers, but just being there, supporting each other and talking through those feelings." Feelings are complex and we all have them. It's wrong for people to attempt to dismiss them or belittle them with sympathy. (I also ask my younger sister if she needs advice, or just to vent, that way I don't give unwanted advice that is potentially belittling.)
I was holding it together for most of this video but when you said some days you just can't deal with it I must admit I had a little cry. That feeling you were trying to put words to is how I feel almost all the time at the moment and hearing your words just made me feel seen. Thank you, thank you, thank you for making this video it was really what I needed. Also I just want to let you know that as a fellow human who deals with chronic pain I think you are a superhero - it takes real strength to share this (more than lifting a 50lb suitcase!!)
You are not alone in daily struggles with this, chronic pain sucks! ❤️
Same here
I love that you’re willing to be honest about the difficult days in a world that isn’t made for you. I found a lot of the emotion resonating with me.
I’m not disabled; I’m the “token single person” when it comes to most everything with my social circle and family. And most days I’m great and loving life. But when the table I’m at is the only one with an odd number or ‘this Christmas we’re exchanging family gifts’ or yet one more person asks if I’ve come alone…sometimes I just want to lock myself in my car and scream.
You are not alone. After decades of dealing with my limited mobility, I still have times where I am filled with anger. Family tells me to ask for help and then when I do they put off my requests. Then I'll attempt to do things on my own. Then they ask why I didn't ask them for help. It's a cycle that is so maddening! Rage is the result of unmet expectations in my opinion.
Wishing you a blessed day... with freedom to rage. ✌
When I look at you and listen to what you have to say all I see is your beauty, kindness and compassion. You have no hardness or bitterness in your face. You clearly love animals. You are beautiful inside and out. You are an inspiration.
I dont think there's anything wrong with being angry that the world isn't made for you. In fact, I think people need to say it more so that the world can be more accommodating.
I am constantly upset with the ways that the world is not built for people like me. Especially because of all the ways that it could so easily be different.
Expressing that anger and frustration is the only way things will ever change if not for us then for people like us in the future.
Your honesty on the realities of your life is refreshing and why I watch your channel, most of us don’t have any idea what struggles you have. What you say makes so much sense especially your mental health advice. Thank you Jo. ❤️
I am amazed at your courage to express things publicly despite feeling they have no place. Listening to them they feel completely reasonable and that it's good that you expressed them in case others feel the same way. But I can imagine it feels very different when choosing to do so. I'm glad you chose to, I love your videos. Thank you for making them!
Hi Jo, fellow right BKA here. THANK YOU for expressing the very normal rage/frustration/sadness we the disabled sometimes experience. I’ve lost the ability to use my prosthesis due to a degenerative cardiac condition, and am now wheelchair bound. And as a terminal dialysis patient, I completely understand the spirit-crushing truth of having to ask for help.
Please know that your emotions are valid and that NO ONE has the right to set expectations for YOUR journey.
I’m so glad to have discovered you and am honored to be sharing your truth.
You don’t need to stay strong. Just stay.
Hugs and love,
Chris
Durham, NC
Thank you for sharing your story! As someone who is not disabled and who often sees disabled people talking about their disability in a positive way, it was nice to hear that you have human moments, too. Not that I didn't think disabled people didn't have feelings like frustration with society. Those are very much valid feelings. I understand that you might get frustrated in this world not always accessible to you. It was nice to hear someone put it to words. In a sense, you are erasing the boundaries that sometimes exist between the abled and disabled. Again, thank you for sharing your story :)
Mostly Inaccessable in small and major ways...
We feel the pressure like Jo said to be so much more positive about our disability to make ableds feel better and to meet the standard of the "good strong disabled person, beating the odds" There's so much pressure to not express the anger and frustration at the hard stuff.
The vast majority of that hard stuff is to do with a world built to exclude us, people not understanding or caring and also excluding, some of that hard stuff includes physical pain or fatigue...
I would encourage you as someone open to learn and understand to research more, look into the social model of disability, follow other wonderful disabled content creators.
Thanks for being an ally. ❤️
Thank you so much for sharing this. This is really helpful for me as a stubbornly independent, invisibly disabled person. It is so important that people like us hear that we're not the only disabled person who deals with these things that we have so much trouble talking about
Jo, you’re supposed to say whatever you want, whatever you feel, whenever you feel it.
I feel like this so often!! I’m not happy that someone else is going through it, but I am SO relieved that I’m not alone in it!!!
Sweetheart,you have every right to feel the way you do. I am an amputee since 10 months ago. I feel exactly the same way. You are not alone. I am so blessed to hear someone express the actual reality of life. This is a great video !!!!! Thank you for acknowledging your sincere feelings. Love 💘 it....
You are not the only one acepting the help when its needed.... I have 2 hip replaced, 1 shoulder and a spinal fusion.... good days i can walk and nothing bothers me.... but those days where everything hurts.... its like you need the help but in your mind you tell yourself "dont be a baby... or its not that bad"... and I end up worst in later on.... so thanks for posting this.... I see i am not alone when i feel that way...
I feel this on a deep and personal level. Most of the time I just wear a mask pretending I'm not struggling but once in a while it just feels like too much and it's hard not to feel bitter when my strength fails me temporarily
THIS! So much of this. Like, yes, you are strong and resilient and can do a lot, but it sucks to need to be. I am so glad you share these real moments, because they are so normal and it is so important that people can see this.
Hey Jo, sending lots of love!
PS: This has been my go to comment to many of the UA-camrs I like lately, because I don't always know what to say and I understand I have no idea what they want to read or need to here, so this one feels safe.
Just show honesty and empathy while being yourself. That's the best any of us can do.
What I feel resentment about the most is that I feel like my disability makes me more vulnerable to others. They can choose to help me or choose not to when I really may actually NEED their help. That’s what makes me worry when I’m out in public places or especially when I’m traveling alone, which I really enjoy doing. I fricken hate that and I am angry about it a lot of the time. I think it’s fine and healthy to be angry about it as long as it’s not changing who you are as a person and you aren’t aiming that anger at anybody or yourself in a destructive way. I get over it and do try to still get out there and live and do what I love even if it’s scary and I’m vulnerable… clearly you do too!!
👍🏻 starting my journey the 21st. Finally getting out of this damn wheelchair after almost a year. Thanks for your videos.
Good luck!
@@Roadent1241 at 72, need all the help I can get.
@@kimrider969 Completely understandable. That's my parents age. I'd offer to help if I could since I'm used to doing that for over half my life and I'm only just 30 XD Not really a way to spend a life but oh well.
@@Roadent1241 I’ve accomplished an awful lot and I’m looking forward to the new challenge. Hope you do as well.
@@kimrider969 All the luck to you! I've still gotta figure myself out, I've put everybody else first.
Honestly, this is exactly why I love your videos. You aren't trying to sugarcoat how you say things, you say it as it is. The thing that helps me the most is solely that other people feel like I do, not mindset or anything else. I like that you just say how you feel, despite knowing it might make others uncomfortable to hear, but it's reality. I genuinely hate asking for help, with ANYTHING, I once pushed myself up a steep hill at my school in my wheelchair, going to first aid for feeling really sick, because I don't like that I can't do basic things that others can. It's nice to know it's not just me who is so stubborn as to inflict more pain and problems on myself than to be willing to get help.
I really, really relate to this. My disability is a little different in that I am chronically ill, but yeah. Understanding that the world is not built with people like me in mind and that people like me are largely forgotten or swept to the side. In the United States disability assistance is so low that most people live below the poverty line, and there isn't much you can do to make and save money that won't kick you off those benefits. You can't even get married without risking it. I feel like I'm not allowed to live a full life and be happy and I think what's most painful about that is to some people in power, that is by design, because people like me are seen as leeches and less worthy. If I had one message to the ablebodied out there, it's to look around you and realize the life that many of us have to live.
It sounds ridiculous but all I want in life is to be able to work a regular shitty job, have my own tiny apartment, and have enough money to feed myself and keep myself healthy. That's what everyone else around me does, and rightfully they complain about how much it sucks, but I can't even do that. It's really, really scary.
With you 💯. I have MS and am trying to get on disability right now. But even after I get it, I likely won't have enough to live on. I worked 2 jobs most of my life. I did Silicon Valley and international tech jobs. But the medical bills destroyed both my family and my retirement funds. There's no way to save enough for that kind of financial hit. I'm sorry for your situation and for all those others like us out there who are suffering through this. Makes me so angry 😡
I've been born disabled and I'm having a lot of trouble with chronic pain. My parents have always encouraged me to voice my frustration with the whole siuation. They've given me space when I just wanted to scream into my pillow. And I think giving yourself those moments is very important. Let your anger, frustration and pain out, it's ok to feel about this situation like that. I hate the mindset that you always have to be positive about your disability. It's just toxic and not helpful at all. Everyone is allowed to feel bad sometimes. I'm very happy you talked about this topic, cause I think we need to talk a lot more about it. You're not a "bad disabled person" because you're sometimes sad or angry about it.
I know those feels. I'm not missing a limb, but my disability is nerve damage in both legs caused by quadruple hernia surgery after being attacked by a former student having a meltdown (I used to be a special education teacher working with very challenging students; I don't blame the student, they don't have the intellectual capability to know what they were doing). I have numbness in both legs, pain in both, and the pain is often severe in the right. I went from rock climbing, swordfighting with a medieval recreation group for more than two decades, and so on, to walking with a cane and stairs being my enemy. The worst part was finding work after leaving teaching. We like to say that discrimination isn't real but that's a load of BS. I had so many interviews that they would literally just stare at my cane. Several where they asked me if I was capable of physically doing the work. Like yeah, it's a call center.
Some days you just want to fight the world, and that's okay. It's part of the healing process. I've (slowly, and often painfully) learned that it's okay to ask for help when you need it. How many times did I make a fool out of myself trying to carry more groceries in than I should with one arm (remember, cane), limping, and fumbling to open the screen door, while telling my roommates, "No, I've got it." No, I didn't have it, but my pride wanted to think I did, when I should have just asked for help or accepted it when offered (or even carried less bags, but that's something my pride hasn't *quite* accepted yet; everything's a work in progress).
The point is, we're human. We fall down. The falling is easy, the getting back up, it takes steps, and that's okay.
I don't know where admitting things suck sometimes has become a "no, no".The fact that you let out your frustration in a locked car says something about you-you weren't looking for sympathy or saying "poor me". You were just fed up with the situation. You really are a positive person from what I can tell (this is the only time I've seen you talk) but even positive people can have down-times and that's okay! Being young and strong makes it even a little tougher because you feel invincible in that stage of life. I'm impressed that you didn't let the jerks parking in those spaces get to you. Thanks for sharing your frustrations...especially from a suitcase. That was awesome.
Showed this video to my wife, and she would have been happy to offer the kind of help she would have gladly taken. She's an LEO and writing disabled parking violation tickets is one of her favorite things to do at work.
Im with you though, I have no clue where this perception comes from. We aren't always ok, and sometimes the world sucks. Call it for what it is, why try and sugar coat the damn thing?
Love your Videos!!❤❤❤❤
"Im supposed to say whatever TF I want" should be the title. Right on! I'm sending all the love. It so good that you speaks from the heart and everything is true.
My name is Randal Eib (Randy) Due to diabetes last October I became an amputee below the knee, found your site on UA-cam and have greatly appreciated all you have shared.
Yes being an amputee does come with limitations but as with you and other positive ones it has helped me greatly to press forward with my life even though I am an elderly one (76 yes old) with numerous health conditions and many serious hospitalization.
Thank you for being real.
Randy
Randy, from one diabetic to another I just to say kudos to you for hanging in there. I hope your days spent in the hospital go well for you and that you only have the best of help from all who are there because they care. Sorry to hear about your leg, and my your other complications find a way to be well managed. Stay strong, at 76 I would say you have done well in life while living with diabetes!!
Your transparency is heart wrenching 💔 thank you for being your struggles to the for front more awareness is definitely needed it is realistic not neediness or weaknesses. Thanks for sharing 👍 😊 people care and most importantly will be supportive if accepted. Blessings 🙏
Keep fighting! No need to be ashamed, it's perfectly normal to lose your cool. I'm glad you know that. You are amazing and l loved this video. Nice to meet you.
I really needed to hear this. As an artist with chronic pain, it can be very easy to guilt yourself for not being even more productive and creative as a result- pain can be an important inspiration, and art a useful outlet- it can be a blessing that grants you work and money to pay for all the extra medical crap and it on a good day you "wouldn't have it any other way"....
but there are days, months, years where you are struggling just to stay alive, eat, sleep, work....and you look over at an able bodied colleague who is so productive.....and you imagine how much more you would do if you only could.... and when they look back- they see how tired we are, they think we want or need rest- understandable- but I don't think they realize what we want so badly, is to work harder.
It can make me dislike myself, feel like some insecure, envious and embittered little person.
In my experience, one of the most validating things that I can do when it comes to talking to people who struggle with disability (in my case, talking to my sister with depression) is to express my sympathy in the form of communicating how awful something sounds, and following it up with expressing how grateful I am for not having to experience that, becease I would hate it. I've said something along the lines of "Damn, that sounds truely terrible. I cannot imagine what that feels like. Literally trying to do it is like trying to imagine death; my brain just rejects how awful that is, and I must say that I'm grateful I don't need to experience that, and really hate that it's something you deal with.". I don't know if that's what anybody else here likes or wants to hear, or feels like they need to hear, but I just thought I'd say what I've done that's helped disabled persons in my life.
Uhhhh yeah I’d say that is a SHARP “your mileage may vary” and you need to reserve that only for people you know well, who like it. To me that sounds like you’re telling me I should kill myself.
I was retired early from the Army with a 90% disability rating. I totally understand what your saying. Speaking your truth about being frustrated doesn’t make you a bad person. It makes you human. I used to get so frustrated it the beginning because I couldn’t do the things that’s made me happy…at first. I am also fiercely independent and I was mad at first. Overtime I realized I could do a lot more then I realized. It just took learning how to adapt. You’ll get there. It’s totally ok to get angry and scream 😱 I feel the most important part of my journey was simply…when you fall…get back up. Getting back up can sometimes be the hardest thing that day, but I had to do it. Resilience was the key to success for me.
I feel like everyone has struggles like this once in a while... As a short person, I often feel frustration at not being able to reach things. As a stubborn and independent person, I also don't like asking for help. Your feelings are valid and shared, Jo!! 💕
The thing is though, for disabled people it's not once in a while, it's every freakin day. I'm short too so that's a bit annoying, but it's entirely different from genuine access issue that say a little person has, where the lack of accessibility means they can't shop without help or cook in a kitchen without aids.
When your looking forward to going out with friends, and you can't actually get in the building because wheelchair access is not existant, that's more than a little struggle once in a while.
Jo was expressing a deep frustration and anger that she feels and yes it's very valid! But unfortunately your trying to understand from your own perspective and missing the point invalidates your telling Jo her feelings are valid... You (likely unintentionally) completely dismissed the validity of her frustration and anger at the situation, by saying as an able bodied person it's the same as everyone's occasional inconvenience s, and that asking for help as an average short person is the same as asking for help as a disabled person.
It's not the same, please rewatch and try to see this from Jo's perspective. Please look up ableism and learn and expand your understanding of why commenting in this way is exactly one of the things Jo was saying was harmful (well intentioned but still ableist and harmful)
Thanks ❤️
@@kristelfae5054 I appreciate your perspective. I absolutely do not mean to dismiss anyone's struggles. I only wanted to suggest that I sympathize, but I know I absolutely do not share the experience. I'm sorry if it came across otherwise.
Thank you for this. I will be showing my husband your video. I hope this shows him that he's not alone in his frustrations and his setbacks.
Everyone with any disability feels this way. I have the same issue of either not asking for help or (no thanks autism) when I do it's because I have disintegrated to my childhood emotional mindset. Add in everything else plus being 55 and not getting diagnosised till age 53.. Lets just say most days I am not alright and don't know how to tell people that without getting the reactions you described. As long as I can stay " thinking " and mostly logical i'm functional, but the moment emotions take over I am lost. sighs.
One thing to remember, everyone, even the temporarily-abled (term for those that have no current disabilities) needs help time to time.
And even more important, emotional release ( be it a scream or a cuddle or whatever ) is something everyone goes through as well.
So on all counts, you have nothing to be ashamed of. Thank you for sharing this story.
I'm also disabled and I agree with you and its hard especially when people look at you in a judgmental manner I have been living like this for 11 years and I regularly gist brake down
My 64 yo hubby, has the xact same stubby as you. He's naturally a negative grumpy old ogre.... I sent this vid to him. Thank you.
Thank you for sharing this as it does always seem like you are bubbly and happy ALL the time, and I know you don't share everything here but I do love your channel and it brings me joy. I get so frustrated with having to be in my wheelchair all the time and there don't seem to be ramps or flat sections in a walkway/ sidewalk for you to either cross the street or get into shops. Another thing I hate about being in a wheelchair is not every shop has aisles wide enough for me to get in and these are places I used to love shopping at as they fill all of the stores with awesome stuff that "you just cannot live without", hehehehe, not really but hey it is fun to see it all on the verge of tumbling over with just a breath. I miss the people that run or own the shops because I just cannot anymore :(. I guess I am lucky where I live though, most of the time people are kind and helpful and follow me around the store ( I usually go when the shops have barely anyone in them so I guess I keep them busy by helping me. I DO have to say though, I love my chair too as I can be more independent at home and only ask people to help if the product is too high for me. My pain level is considerably less when I don't have to stand or walk anywhere because I have bone and muscle weakness and I broke both my legs while fainting one day because I refused to use a chair, what was I thinking? AND the chair makes carrying my O2 easier, I just hang the canister on my handles behind me. I am usually a very happy person like you and like to find the good in everything including all of my equipment, they are just part of who I am and I like me. :) Have a wonderful day everyone that reads this, you got this, you can do anything your heart desires just a little differently. Hugs to anyone who needs one cause "this too shall pass".