What You SHOULD Say To A Disabled Person [CC]
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- Опубліковано 21 лют 2019
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Things I would like to hear:
"Hey, we're planning [activity at a future time] and would really like to be there/come alone/join us. So I wanted to make sure you were invited, but if you need to cancel or bail early just let us know."
"Friend and I are going [activity right now]. Do you feel up to coming along?" As opposed to, "Do you want to come along?" Because the two are not always the same answer, and I hate always saying stuff like, "I'd love to, but..."
"You're looking a little overwhelmed...do you need me to find you a quiet spot?" Alternately, in a highly social situation, "If you want, I can sit here with you and 'monopolize your time' so you can get a break from everyone." See also, "Do you need a bouncer/personal space guardian?" for when it's a social situation and I just cannot do the social thing right now, but don't want to be rude. Think of it like the opposite of a wing-person, intercepting and directing people away so I don't have to spend what energy I have left trying to manage that politely.
Also, on the "can you just not, but rather do this" front, CAN YOU JUST NOT TELL ME YOU'RE COMING OVER WITHOUT EVEN ASKING FIRST?!?!?!? Thank you. Nothing triggers a panic attack like being in full down-cycle, blanketfort hermit mode and getting a text that says, "Hey, we're on our way over to your house to pick up that thing/bring you the other thing..." or "Why don't I drop by and we can..." without any prior prep time or planning. And no, that last one is not asking. It's suggesting. And now I have to figure out a way to say "Oh hell no not even a little" without being rude. Which chances are I don't have the spoons to do if today is not a good day for that. Asking is, "Hey, I've got that thing you wanted...is today a good time to drop it by? Or would another time be better?" Do that. Always leave your chronic friends with a comfortable out option that comes from you. ALWAYS.
sonipitts these are spot on! I’d add since I love being social in like your example “highly social situations” it’s just that my back and knees begin to protest after standing/sitting somewhere uncomfortable for too long. So your suggestion of finding a quiet place I’d turn into “Hey guys why don’t we find somewhere to sit down” and then move your whole group to that place. Nothing worst, for me, is to be socializing need to sit down then have to be alone because everyone else is just fine standing. I don’t want space or a “break”, I just want off my feet lol!
I always feel so bad when someone says "do you want to come to xyz" and I can't do it because I would love to come, but I physically/mentally can't
Also I have never experienced this, but it would be amazing if someone said "hey I was planning on doing this activity with these people, what needs to happen/how does it need to happen/how can I help you so that you can come to?"
Damn I felt that last one! I'm not disabled but I have social anxiety and nothing makes me panic more than when I have to meet people without being prepared!
That's just common sense, right?! I don't have any disabilities and absolutely hate when someone comes unannounced to my place.
@@lispequena You would think. And yet...
Your dress is beautiful, reminds me of Cinderella's ball gown.
Thank you! I thought that too when I first saw it... 👗😍
She tends to always dress beautifully. Every video I've seen her in, she always looks classy and beautiful. Of course, her personality rocks as well.
She is very lovely! I also love her vintage clothing
I'm always to nervous to wear off the shoulder bit her dress is sooooo pretty!!
Jessica Kellgren-Fozard omg you replied!!! I don’t have notifications turned on (makes me very anxious...) so I didn’t realize but I am rather a fan so I had to squeee my excitement 2 years later!!!!
"is this a bit much today? Do you want a break?"
Sometimes I get so overwhelmed, and I am pretty sure it is evident outside of my head, but people wait for me to say it and I just wish I didn't have to articulate that I can't quite cope with the specific situation, today, because I am too busy trying to keep the last shred of a grasp on it. So much easier to say - it is a bit much, yes.
Yes please make the video about "disabled person" versus "person with disabilities". I loved everything in this video. Thank you so much.
Anyone in the comments looking to see if she made that video: She did. Its here: ua-cam.com/video/TFisTbTCims/v-deo.html
When having to cancel plans for the 10th time in a row with the same friends (and apologizing 100x) friends response. " hey no worries we support you and want you to rest... another time :-) "
Everytime your videos start with "hello lovely people" i respond with "hello lovely sassy person" 💙💗 looooooove you so much!
I’m totally with you on the Diet Coke obsession
Also, I’m not disabled but I do support a friend who’s blind with some daily tasks she finds difficult. If I could ask people to say anything to her it would literally be “talk to her!” I’m so fed up of people mouthing things at me about her. She’s blind, she’s not going to spontaneously combust if you tell her something helpful.
Also, “no you can’t stroke the dog and why the hell are you asking me!?”
more often than not the good old standard "Is there anything that I can do to help you?" aids a lot :) kindness is good for anyone.
the "oh my god, what am I? am I allowed to part of this group?!" part speaks to me so much as someone with somewhat mild left-sided cerebral palsy. It honestly wasn't until my therapist was like 'it's part of you of course you're allowed!' that I stopped feeling constantly guilty whenever I had to ask for any kind of help or consideration even slightly related to my cp. These vids are so good, Jessica, thank you.
I would LOVE a vid about things disabled people might say to you, and how to understand them. For example: "I'm feeling very depressed" means something much more serious when coming from a person who is living with depression. "I'm tired" is often not taken seriously by non disabled people. And "I'm feeling overwhelmed" is often ignored, or shrugged off. People without disabilities often don't understand the real meaning behind what disabled people say, because they only have their own frame of reference.
Oh absolutely hell yes! I think as a person with disabilities, particularly invisible ones, you do learn to use words that convey your situation in terms that non-disabled people are likely to understand - even if it means lying to some degree. I learned to convey a lot of my difficulties to my co-workers and employers as "migraines". The truth is that I have a headache, and it's definitely not a migraine, but my baseline for headache is all day every day for 19 years, so when I bother to mention it because I'm having difficulty doing my job - the pain is about as severe as most people understand a migraine to be.
On a different tangent than you're referring to, I also blame bad days, or days I'm sick or need to leave early on migraines, because sometimes the reality is I am having severe suicidal ideations that I can't shake today. But if I told anyone that, they are not going to listen when I then tell them, "but I've been doing this for a lot of years, I don't self harm, and you should let me get in my car and drive myself home, I really can do that safely, but I can't be here anymore because I need access to my cat and or my support network, which is not here". I mean, if I tell them that, they're legally required to ensure I see a doctor who can assess if I am a risk to myself or others, when what I need is my personal support network. So, even though I do discuss mental health issues, and I readily admit to my own - because I believe we have to talk about mental health, I know when not mentioning it is going to get me better help than telling them.
I have a reading problem, I don't personally call it a disability, and often need people to read things for me. My mom has the nicest way of asking if I need help "are you having problems humaning today" it always funny to me. I know some people may not find it funny, but I know my mom is being funny.
I agree! Humor is sometimes the best medicine! My children and have have several private jokes about my hearing and autoimmune disease. My favorite is when they say something cheeky, I reply, "I'm not hard of hearing... I'm ignoring you!"
Not trying to be rude, but know the feeling. Once last year-ish I had my eyes dialated and still wanted to go to school, and so my friends had to read everything and I had to ask for help writing...
Tyler...what? Rough day, huh kid?
I have a chronic pain issue that is very on and off. It can sometimes be so bad that I can't leave the house, but is most days bad to the point where I can still function and live with my pokerface on - THIS DOESN'T MEAN I'M NOT IN PAIN, SO DON'T TELL ME IT'S NOT /THAT/ BAD. Honestly, just because I'm dealing with something / not bed-bound doesn't mean it's not a strife in my life. Also when I try to explain it to people (mostly employers), it doesn't help when they make that 'that-doesn't-sound-like-a-real-thing' face (If you know, you know).
I'm really sorry that happens to you. I don't have chronic pain, but I think everyone knows at least a little bit how to be in pain/discomfort but still be functional. Plenty of people still go to work or school when they feel sick or are tired or have bad menstrual cramps, etc. Employers should be able to understand that, and it doesn't change when it comes to chronic conditions.
As someone with a chronic back issue that comes and goes I completely understand you. It's hard to explain that even when I'm able to be up and about living my day to day life that my normal would probably still register as not great to those not afflicted in the same way. Hang in there, some of us understand!
Honestly. Most days I have to struggle around school and up and down stairs and things and just because it hurts, doesn't mean i cant do it, it just means i cant do it indefinitely. They seem to swing between "you must stay bedridden and let it get better" (it wont 'get better') and "you're walking so you're fine??" No I'm not fine Chris this takes a lot of effort and it does actually really affect me
I relate to the poker face thing so hard. I get chronic migraines sometimes and I’ll be trying my best to function...meanwhile my ex partners were like “oh I have a headache, I can’t believe how awful I feel! Take care of me!” OK THEN
Ohh, i know that doubtful face! ‘I-suspect-you’re-lying-just-to-take-a-day-off-letting-others-do-your-job’
I have bad headaches, that can last from few days to few months 24/7, since my 14 y.o. At my worst times painkillers don’t help.
I can function as well: i can walk, i can talk, and my pain is going along with me. I can’t expect everyone to believe me and i can’t shout about my pain every second, but i want to be believed when i come home in the evening and ask for some rest because i’m in pain and i should brace myself for the next day. I just want my relatives to take it a little bit more seriously.
Just because i’m moving around doesn’t mean i feel good.
Something I would love to hear more is "do you want my advice/help/opinion or do you just want to vent?" Because sometimes it really just want to say what's going on without then needed to explain why every piece of advice being given is not actually helpful
Oh that's a big one. A "friend" actually stopped being my friend because she took it very personally when I didn't follow her (useless) advice.
Agreed. I wish it would be common practice for people to ask this question and I am learning to do it myself when I’m listening to my friends speak, although it’s sometimes hard to remember.
I recognize that the following may seem sort of contradictory, but I found it to be personally empowering so hopefully it’s ok...
I recently learned that I can mention whether I want to be simply heard, or if I’m seeking sympathy/empathy/commiseration/similar experience connection/etc, or if I am actually seeking advice before saying whatever it is that I wished to say. This can help prime the listener to listen/respond in the way that’s wanted, rather than in whatever manner the listener deems helpful. And if this occurs enough, sometimes they will even learn to start asking it of me themselves.
Thanks for another lovely video! 💖💖💖
“I believe you” is always wonderful, whether from a family member or friend or especially doctor. So much of my issues is invisible, and having to convince people that Yes, I Really Do Feel This Bad All The Time is exhausting!
Exactly the one I was going to say! I get doubted and second guessed constantly and grew up being referred to as a hypochondriac , just once I would like to here "I believe you." from my family, especially my parents.
ambercloud I am so sorry. I know how hard that is! I’ve recently had a string to good doctors who believe me and I’m very close to at least one diagnosis- so let me share some of this positive energy your way! 💖
@@clairespahn6639 Thank you, I have a diagnosis of EDS that they are so dismissive of, and the docs are talking about me having more and I'm dreading having that convo with the family! I'm glad you're having a good experience with your doctors right now, it's frustrating how long it can take to find good ones who genuinely listen!
ambercloud I hope you are not alone in this. I have EDS, too and most people really can't imagine how hard it is. We have so many comorbidities with it that I don't know any EDS patients who only have the one diagnosis. The good news is, we can all get through it together. Check out the support groups on Facebook for Ehler's Danlos Syndrome. Or you can email me at txnursie@comcast.net and hopefully I can help you find some better support. It's hard not being understood! I hope to hear from you!
"I believe you" is huuuge. I cried when my boyfriend finally realized I was actually sick for real, it meant the world to me, and I never cry.
Hello lovely person! I loved this video so much it made me cry. The comment about the nap is SPOT ON and I'd love it if people would say that to me!
How about "Do you need a hug?" Some days I need a squeeze and others I'd rather you not touch me.
Oh yes hugs. My world has adapted hugs. We have everything from proper autistic deep pressure bear hugs to please don’t touch me hugs. For the don’t touch me person in my world it’s a mug with “❤️hugs❤️” on it containing tea ☕️
"Can I give you a hug?" is by far my favorite sentence. The usual answer is "yes but for the love of God AVOID MY SPINE" but in many cases it's "please don't touch me", and people get offended, and it's Bad™.
Hi Grace, I just wondering, based on my experiences, with the people in your world that are offended, is it that they simply want to do something to love you and let you know how much they care about you but they are struggling because physical touch is their love language and they are struggling to find another way?
I wrote In my comment about the ❤️hugs❤️ tea mug. That came from me working hard to identify what my friend responded to. What calmed her and made her feel better, secure and loved.
For her it was the mug of tea and affirming notes and being brave enough to step in to her world while others ran away because her anxiety manifest as un reasonable behaviour.
Maybe if you can help people identify another way to show their love they will not get offended
@@jolawton9626 That's exactly what's happening. I'm extremely verbal in my affection--whenever I leave after hanging out with someone I *always* tell them I had a great time and that I love them. I've even been known to say "love you" to casual acquaintances or strangers I'll never see again, because people need to hear it. Physically affectionate people find this quite odd and even slightly overbearing. I need to find a way to bridge that gap somehow.
I love to spread the message to others to ASK rather assume or just go in for a hug. This isn't even about myself, as I would be delighted to get hugs all the time, since I often get exhausted from putting on the facade of "being okay". The reason I like this question is because I've had multiple open conversations with friends who find hugs, even from close strong relationships, anxiety inducing and extremely uncomfortable. Sometimes, as you said, people need their space while other times they may welcome a squeeze. But it is ALWAYS better to ask and be sure rather than risk making the person feel more uncomfortable or upset, which should never be the purpose of a hug :)
"How much longer before you'll need a break and sit-down?" Is my favorite because it both gives me agency and shows the person is willing and ready to find a cafe to stop in to rest and buy a beverage so I can take more pain meds.
I prefer identity first language and think a video on both the personal, internal-debate side and the advocacy side (i.e. parents are mostly the ones saying "person-first only") would be very useful for many. Sensitivity training in nonprofits and schools pushes PFL as the only right way.
I got my lovely people sweater earlier this week and it came at just the right time!! My ribs have been inflamed and the soft material of the sweatshirt (plus I ordered it to be way bigger than I needed) was really helpful for getting dressed!!
The most valuable thin my best friend does is to start reminding me days in advance of large or important upcoming events, particularly reminding me to get extra rest the two days prior to improve my ability to do the thing. "Hey, remember we have that party/appointment/event/funeral/whatever to go to tomorrow, you look a bit stiff, maybe tonight would be a good one for a nice long hot soak so you aren't all locked up in the morning." can be the best thing ever since it reminds me of the thing, alerts me to her awareness of my current condition, and includes a helpful reminder on a self care item that helps with that particular issue. She'll also remind me if i signed up for something in particular like bringing some kind of baked treat - and which dietary limits are on that treat since I frequently make baked goodies that allow a few people in the community to eat more than a veggie tray at local potlucks.
Conversely, sometimes life is just shit and all the prep in the world can be for naught if my body just decides to not function. At which point she is again a gem and says the very important thing of: "Is there anything I can do to help you attend anyway?" Which gives me back a choice of how to proceed. Sometimes if i'm baking, this means dictating the recipe to her and letting her be my hands, other times its sitting at the kitchen table and letting her hand me ingredients to mix myself. Sometimes if I've made something ahead of time, it's letting her take the food but leave me.
If the answer is no, I'm just not able to get out of bed today, she'll follow up with another important line. "What would you like me to tell people who ask where you are?" This then allows me the choice of what excuse/how much detail of my current condition is passed along. While I am generally pretty open about my medical issues, there are times that it's simpler to pass on a generic, "not feeling well" rather than sometimes disgusting details.
After the event she'll ask another important question. "Can I tell you all about it?" sometimes I want to know what all happened and be up to date on events. Other-times I don't and this question acknowledges that sometimes, especially when I've had to miss something fun, I do not want to hear all about whatever fun thing I couldn't do was.
Well said, thank you for the suggestions.
♥️ The loneliness is real. I'm glad that you talk about it because it's genuinely so difficult.
I was recently visiting my brother and he knows about my mental disabilities but not how it affects me, one thing he said that was really comforting was "Take everything at your one pase". It's a very open and general sentence but it means a lot!
I'd love my family to accept that my flat is how I want it, rather than forensically clean. And it's interesting that you mention Person First Language, because I believe it has the opposite effect to what it is intended to do. I find it de-politicises Disabled people. It invites people to say "I don't see you as Disabled" - implying that being Disabled is an accessory we can store away from non-disabled people, for THEIR comfort.
I don't mean to sound shallow on an important video, but you look even more beautiful than usual! I love your hair this way. Stunning! You just look really happy with a sassy sparkle in your eyes!! 😘
My friend always asks me if im in the mental space to listen to her dramas, which i really appreciate. Much though i hate i can't be there for her as often as i would like (due to brain fog, tiredness ect). I have found being upfront about what i can and can't handle has saved our friendship more than anything else and helps her to not take my behavior personally. She is the best and i feel really loved when she says this. Hope more people can be big enough to do this. As always, your video is a breath of fresh air. Thank you for making them x
My best friend and I always ask each other if we’re in the proper mental space to listen to something the other has going on before we “unload”. It’s a great way to make sure you don’t add your problems to theres. If one of us says no, the other always offers to talk.
Ooh, that's a good one! Going to start using that!
I was going to have a No Tech day and turn off the computer, but I checked UA-cam one last time and I am so glad I did! Yay, new video from Jessica!
As for what I wish people would say? "I believe you" is a big one, but an even bigger one would be, "You are not a burden". And then mean it.
Yes, this!! I've had people outright tell me to my face that they don't believe me and think I am going out of my way to be burdensome. Sometimes even if I know someone doesn't think those things, I just need to hear them say it.
Yes, this would help a lot to hear!
Do you need a break/cup of tea ?(after miles of walking)
Are you warm enough?
Do you want me to carry anything?
Have you had enough doing ....... (what ever it is that you’re doing! )
Do you want me to drop you off closer and I can park or do you want me to pick you up/drop you off?
Do you want me to put the kettle on?
Do you want to come to this (but don’t worry if you can’t I can come and see you.....)
My best friend has started just buying me a diet Coke anytime we go to lunch or dinner I told him once that it helps my nausea and he has done it ever since. Honestly the nicest thing anyone has ever done for me!!!!!!!!! ♥️♥️
Basically anything that indicates my relatives don’t just think I’m lazy is what I want to hear. The taking a nap in the guest room comment would be so great!
You know.. I believe most of us who struggle with disabilities, limitations, pain ... mainly want those struggles recognized. I don't need anyone fawning over me but each time (doesn't happen often) that someone says something or makes a plan or decision based on the fact that they *recognize my limitations* makes me feel so incredible I can't even describe it. Picture you are sitting around with like 3 friends deciding what to do together for one of the girls birthdays and we're all talking about a girl's day out plan when suddenly one of your friends says _wait, we can't set something up that Megan will struggle with that much. Instead, why don't we..._ [and then Megan starts crying inside because someone recognized me and my issues, knew that I would *not* want to say "no, I can't manage that", and jumped in to eliminate that from the options] Even if you have to ask. That same friend in another instance had said to me about going to a wine fair _now Megan, this fair has a really long walk from the parking area to the fairground, we need to figure out if that is doable for you_ I know. That friend is awesome, isn't she? But this is what being recognized looks like. It's likely even more important for disabled people, but we need to be *very present and aware* for the people we care about.
"What's going to be helpful?"
The most important thing is to not make a big deal. Just let people know that you are willing to help and there if needed. Its so valuable to know someone has your back but you don't need someone to take over so just letting them know can be enough.
"I know you're not faking it, what can I do to help?" - school (I left 6th form in 2015 mind) massively screwed with my head because everyone thought I was faking all of my issues, which at the time were limited to chronic migraines and a damaged right forearm that's permenant. So now I am constantly convinced that everyone thinks that I'm faking it and I struggle to give myself the rest that I need... thanks school!!
I've been recently diagnosed after struggling for years and I wish my family would realize that just because they can't see what's wrong with me doesn't mean it's not there. Like if someone would tell me it's okay to go take a nap, or offer their help, that would be so nice for once. I'm sure they will start to understand eventually, but for now I have friends that are supportive and understanding. Thanks for this video, I wish more people got to hear these things on a regular basis.
Thank you so much for considering that not everyone has Instagram. I absolutely despise when a UA-camr requires someone to do something on Instagram to get something for a giveaway, get questions for a Q&A, etc.
“Say that to her again, and I’ll hit you” sounds like something Claudia would say! I feel like she got a lot of these pointers directly from Claudia 😂
As someone recently diagnosed with Crohns, I find these types of videos you make really comforting. Like taking a breath of fresh air because someone just gets it.
Because of my mental illness and my trauma, "do you want me to ____ for you" is a really loaded question and I usually say no regardless of whether or not I actually want or even need assistance. It's so much less stressful for me when people ask "Can I ___ for you?" That way I'm giving permission rather than asking for yet another thing
Thank you! That explains it for me in words. I knew that simply helping someone I don't have a close relationship with would be wrong, and I felt that asking someone if they needed/wanted help could be done in both crappy ways, and in better ways, but I find myself stumbling over how I could word it to convey what I actually mean ("I see you fellow human, and I want you to know I would be happy to provide assistance, if that's not too intrusive") and not some version of "Hi broken person, could I, the better than you unbroken person, make myself feel good by doing this for you, since you obviously can't". I think I gravitate towards "can I.." with those I know well enough, but I couldn't tell you why it was better. So, "do you want me to _ for you" requires them to essentially ask me for something, while "Can I _ for you" is empowering them to give me permission, or not, to assist. Thank you for helping me be a more useful human.
YES, I couldn't figure out how to say it but that's just right
Those last ones where so important for me!! As someone with a few chronic illnesses that may or may not be disabilities depending on who you ask and who is also suspected to have another disability but hasn't been completely diagnosed, having people ask ME what I preferred to be called is something I never thought of
Love you so much Jessica!!! 💋 Can't tell you how many times I've been called lazy, anti-social, unmotivated, attention seeking, etc. b/c of my depression, anxiety, lack of energy, sleeping later than most people, etc. As if these conditions are not 'real' enough or just a 'choice'!
I think I was raised so very differently than most of my peers. All the points you have made where instilled in me when I was growing up. Basically be kind and listen. When I was a teenager my mom took me to a "special" Olympics event. There was a challenge that day to spend the day in a wheel chair. I took it up. Course after awhile it got bothersome but I stuck with it. At one point in the day I was with a group of other kids and we were all trying to learn how to pop wheelies. I fell over and was trying to figure out how to get back in the chair with out the use of my legs. eventually I gave up and just got up. My mom was watching and told me later on several people stopped what they were doing and watched me struggle with it. Ready to offer assistance but giving me time to ether figure it out or ask. She said once I stood up those people just faded back in to what ever they were doing. My point being was they didn't leap in and "fix" me. But where there to help if I wanted or needed it. Sorry for the ramble but I get what your saying. Thank you for sharing
(You're great the way you are!) " [...] you just don't realize how often you have to say it to someone who is given daily messages by society at large that they're a burden and a waste of space."
I'm-
Gosh. God no.
You are lovely. And this goes to everybody out there, doesn't matter if disabled or not.
On that note:
You're great the way you are!
I wish more people told me that I am more than what I make or can do. I’m not my ability level, or my creative output. . .but sometimes I’m the only one saying that. 💖
I have memory problems due to Dyslexia. And sometimes I forgot that I’ve told someone a story before, said the same thing before... etc. I would really appreciate the person listening, to just politely listen to the story, laugh with me, and mention that I’ve said it before afterwards (OR DONT) instead of cutting me off, and shutting me down. I don’t remember telling the story to you. And it makes me feel unloved to cut me off like that. Just let me tell the damn story and laugh with me goddammit😂
In my teaching degree at uni we are told that we should only use the term person with disabilities as disabled person is deemed offensive. Could you make a video about that topic explaining why some people prefer one term over the other? As an able-bodied person I don't fully comprehend this discussion and would love to hear your view on the topic.
Maybe this will help a little. I don't know what your teaching certification is in, but here's an example. This of it grammatically. What does "disabled person" mean as opposed to "person with a disability"? It has a different connotation when referring to a person in the former than it would be with an object, for example.
@@jwb52z9 But from my personal experience, I know more people that prefer disabled person to person with a disability. And I rarely see the latter term used in everyday speech. But as I am not a member of the community, I don't know why people prefer one term over the other.
I see your grammatical point, but I think there is more to it than that...
I think it is the same as people talking about my adopted children. I hate that term. Yes my children were adopted that is the way they came to me but now they are just my children. Same way a person with disability has a disability (or disabilities) but not the whole person is disabled as implied with saying a disabled person. Hope this makes sense
@@anyaler thanks for that explanation! I've never considered it like this before.
@@anyaler The Social Model of Disability frames "Disability" as the structural inequalities we face as people who have medical conditions, not our medical conditions themselves. "people with disabilities" de-politicises us.
Thank you for watching! Hope you found these helpful 💕
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Jessica Kellgren-Fozard i have learned, ADHD is basically a disability, a leaning disability. And im like, no wonder i got a note on my report card saying, 'Needs to pay more attention'
As someone who is hard of hearing, I always appreciate it when my lovely children give me the secret signal that I'm speaking too loudly... And they have even taught my best friends to do it too. I hate finding out later that I sounded like a harridan! They also let me know when the TV is too loud and help me write scathing emails to Amazon when there is no closed captioning on a program.
Most of the time, I just want to hear “I believe you”.
“do you need a break?” would be fantastic.
Hi Jessica!
You pretty much hit all the nails on the head!
Heck with my friends and family: I want my doctor to say nice things to me. I want my doctor to listen to me and say intelligent things and order tests, or give me medication. I want them to put me in the room with the exam table that is lowered into a chair shape. :)
omg i was always feel like im doing doctors job for them, i've had to request tests and referrals plenty of times
I love your videos so much and they have been immensely helpful to me. Would you consider doing a video on accepting being disabled. As my health has declined, I've found it difficult to accept that I need more help and dealing with my world becoming a bit smaller. Have a wonderful weekend.
“Do you feel like talking now?”
“We’re planning to [go to cafe/museum/cinema/take fun art classes/enjoy picnic/do something], can you join us?”
And
“If you need to be alone now, i understand it and i’m fine with it, but please remember that I’m always here for you”.
I would really like my family and friends/teachers to allow me to open up to them about my disability instead of assuming everything is fine
What i would like my friends and family to say:
"I see how hard you're trying and how much you struggle and I'm proud of you for doing your best."
😭😭😭😭😭
(*ahem*) too real... Sorry
I also won the lottery of life; I'm filthy rich in genetic abnormalities. High five!!
I love you and Claudia and Walter and Tilly and Clara. But mostly you. Thank you for being you xxxxx
I always appreciate when people ask if I have the mental space/spoons/energy to take in information before they start a 10+ minute speech that I have to actually take in and process and possibly use the information later.
When I meet someone less able than I, or just having a challenging day, I like to do things for them that I wish were done for me. It could be as simple as carrying a bag, sharing some of my food, or saying it’s okay that something wasn’t done in a timely manner. It’s a way of showing kindness that I feel honored to share.
i would love to hear from my family "i believe you" because often times when i express my pain or discomfort i'm dismissed or disregarded
As someone with a mental/learning (although I hate the term learning disability, I learn just fine just differentley thank you very much) when you said inclusivity is everything I legit almost cried.
Also as someone who was diagnosed much later in life than I should have been (like really thanks doctors) your inclusion means the world to me.
This is fab ❤️
Of course, the danger of asking “what can you eat at the moment?” is getting a response like the one my sister gave, “plants and animals, as long as the plants aren’t wheat?” 😂
Wonderful video, feels so great to listen to all these acceptable/nice things to say with your gorgeous voice. A beautiful phrase I once read was "I hope your pain eases soon" rather than "Get better soon" because some conditions can never "get better" but the subjective pain or discomfort perceived in a tough time can certainly lessen. As you said, it fluctuates. My father often says he is happy I am "healthy" now and I gave up on trying to explain that I am not "healthy" I am just "having a good day/week etc currently".
I will have to remember that phrase. Thank you.
Ugh, the deaf thing hit me. I’m deaf in my right ear and my parents were terrible about making people aware, like “sorry she IS being rude, she’s deaf” thanks mom. Thank goodness for the few excellent friends, coworkers, and my current boyfriend (though my last ex was also great too about this!). They let people know in a way that isn’t shaming to me, and always try to make sure I’m sitting where I need to be without necessarily telling everyone.
i also love when my friend says 'you'll be okay' or things along the lines of that. it may just be the way he says it, but it's just so calming to hear him tell me that i've been here before, and i survived, and i'll damn well do it again.
I love how brutally honest you are
I am recently diagnosed narcoleptic and I feel like my family is having a hard time understanding. It's so much more than just being tired, it's brain fog, etc. I LOVE that you brought that up! Thank you so much for all you do!
3:07 and onward made me cry 😢😭😭😭😭
It’s also nice to hear someone who truly understands ❤️❤️❤️
Oh this video is so needed. “Treat people with respect” and don’t be afraid to ask! As someone who deals with a lot of disabilities I find leading questions “how have you been?” really hard to answer. It’s a moment to moment rollercoaster. Loneliness is something I grapple with. 😔
"do you want me to stay?" I have trouble asking for company sometimes because I feel I'm burdening them. Its nice when people offer it so I don't feel guilty.
Hi Jessica, now I really need subtitles, close-ups of people speaking and I have started learning sign language (uk,us,german) as I have become deaf overnight. It happened two yrs ago in April/May. Thx for articulating so clearly.
Because I struggle with decision making at times I love it when people give me specific options e.g rather than "What do you want to do today?" "Do you want to do something outside or inside?" Is a good starting point- this has the extra helpfulness of showing the amount of energy I have that day. Sometimes "How many spoons do you have for non-mandatory things do you have?" Is also good.
100% not a waste of space. Just saying. You are delightful. Your videos bring light to the world. 💕
Thank you--I usually feel flooded with "not tos" and no alternatives. So I found this so helpful! You're doing great!
I especially like when my “sane” friends laugh at my stories about the hospital, instead of being horrified or going “oh, poor you”.
People close to me who know my issues have gotten really good about this, but I still wish people would do it more. And that's saying, "Hey, I'd really love for you to be at this event/join us for this activity/, but I understand if you're not able to." It lets me know that people like having me around, without making me feel pressured to push myself into situations that might be overwhelming or upsetting. My mom especially is fantastic about this!
Things I'd appreciate to hear
-Can I talk to you about xy or shall we do this later?
-Do you need to leave the room? (when it's too loud or busy)
-Would you like me to do xy for you? (eg doing the dishes, other random chores)
-I'm about to hoover, it might be loud. Just so you don't get startled.
-Need to vent?
Several great things to say and I’d also add phrasing things in a “Hey we’re talking about grabbing a bite to eat with so and so do you feel up to coming along?” way instead of the often used, “Do you want to come?” I almost always WANT to come along but am not always physically and/or mentally up to joining in and socializing that night even though I love the people involved or sometimes I have all day doctors in two days time and know I’ll need to save my energy for that etc. So many people continue to use the term “want to come” with me and I feel like I am ALWAYS reexplaining that it’s not a matter of NOT wanting to come but it’s a matter of what is physically feasible for my body that day and it can get a bit tiring to repeat that all the time. Yes, it’s nice to be included but it would be even better if you spoke in a way that makes it clear you understand I have a disability that must be taken into account rather than making it seem like I’ve declined an invitation three times in a row just because “I don’t want to come”, which simply is not the case. Also, don’t get mad when you suggest a place to eat and I mention I cannot go there because loud music and bright lights are migraine inducing, hard benches with no cushions increase in my pain drastically and I cannot eat smithing there because of migraine triggers. I have gone to places I can’t eat at but are fairly comfortable for me to sit at I’m order to socialize with someone I haven’t seen in awhile but if I literally can’t go into a place without a blinding migraine, I clearly will NOT be going there for any reason again EVER and you do not have to be inconsiderate about that. If a group of us are getting together and I’ve tried for two weeks to get us all to decide on a restaurant and then you make that decision without consulting me the day of and I say I can’t go there because of X, Y, Z medical needs the correct response would be to apologize for making that decision without consulting me and then telling me you know it’s not “my favorite but couldn’t you just put in bigger earplugs, wear your shades and your hat and pick a quiet table in the corner and then you’ll be fine with it for one evening, right?” When I stand my ground and insist I physically cannot go into that place do not argue with me about my own needs and act like I am being inconsiderate or overly dramatic for not just rolling with it because everyone else in the group had “already agreed” without ever bothering to ask me. Those instances are such a harsh reminder of people not caring about inclusion and thinking more about themselves. As able bodied people you are fortunate to be ABLE to get out and grab a bite when you want in many different places without having to consider as much as we do or saving up energy for 3 weeks for a 1 hour dinner with family and friends, therefore we should be considered in the decision making process and not just glossed over and expected to just “roll with it” because one person was hungry for that particular place and already talked everyone else in the group into it without letting me know until an hour because we were going to meet up. I really stand my ground in those moments and make it clear they can go to that place without me or they can choose another place that is physically possible for me to go into and those are their choices because I have medical needs that must be taken into account but the point is that this should not even be necessary. If you know someone in the group has disabilities it should be common sense and common courtesy to ask them what works best for them in a restaurant etc instead of expecting they can just go anywhere like they did before they became disabled. It is not my job to push myself extra and make myself doubly miserable with extra pain that CAN be avoided simply because one person in a group decides to be bossy. If I can’t go somewhere, I can’t go somewhere and that should be that. There shouldn’t be an argument and trying to tell me about my own body’s needs and there definitely shouldn’t be eye rolls and sighs of frustration over having to “rethink the plan because everyone else has already agreed” because I was EXCLUDED from the final stage of the plans in the first place. If you don’t know what someone’s needs in a semi comfortable restaurant are just ASK and when they answer honestly please believe them and don’t try to give them a list of a half a dozen things from an able-bodied person’s perspective that will “help” make the place magically work for them as if they don’t know their own bodies best or are “not trying hard enough” to make things work. Something as simple as non cushioned seats, stairs, loud music, insanely bright lights or only bar tables with high stools might seem like “nothing” to someone who can do those things all the time but when someone with a disability says they are deal breakers because of that disability and offers several alternatives please simply be respectful of that person and their needs and truly make them feel included instead of making plans without consulting them and acting like it’s a burden to change a darn restaurant because YOU were hungry for whatever is. I promise you will have far more opportunities to eat out at that place you love than we will have to get out with a group of extended family and family friends and skipping a favorite place of yours for ONE night to help the other person feel more included is not going to be the end of the world! 🤪🤪
I. LOVE. YOU! I love your sass, how real you are, the vintage style (obvs) and just everything about your videos and your relationship with Claudia. (Seriously, you make my gay heart sing). I'm also a gay, disabled woman and I wish ND's would think just a little more carefully about what they say and ask. On the same stance, it would also be great if more non-disabled people just talked to us about..... anything other than our disabilities! We have hobbies, jobs, aspirations, annoyances and gripes just like ANY other person!
Thank you for these videos! They make me laugh and scream "SHE GETS IT" at my laptop...
I regularly need to be reminded that it's not my fault I can't do something because I am disabled. The guilt that comes along with chronic illness is one of the hardest parts to deal with, even though logically there is no reason for it (thanks society for the constant reminders that I'm a failure!) So having someone accept and understand that it's not my choice and that I'm not failing is really reassuring.
Great video.
Some of my close friends will tell me when they're about to do something very noisy (for instance, turning on a mixer, a chainsaw or a vacuum cleaner) and it helps me cope as I have sensory issues worsened by surprise effect.
I think you included in your video most of the other things I would have come up with!
My daughter always remembers to warn me before doing something noisy. It helps so much. I may still jump, but at least I won't have a panic attack.
unrelated but you look so gorgeous! the blue dress, the pearls, the hair, and makeup are giving me SUCH ariel from the little mermaid vibes
My friends are lovely, but something I still struggle with is the fact that figuring out if places are accessible/have adapted bathrooms etc takes up a lot of energy. Not to mention it strengthens my feeling that I don't belong in society. So when planning an outing to a place I don't know, it'd be lovely if friends would go "I'll find out if it's accessible, and if not we'll find someplace else!" I'm so happy you made this video, because it made me think of what I struggle with and still could I ask my friends to help me with
"do you need to sit down and take a minute?" when friends drag me around walking around the shopping centre for 2 hours and my poor body hasnt had a rest ,,,,,
"did you remember to pack your medication?" thank you, thank you so much for reminding me, did i mention thank you? (my memory is so bad, so when people remind me before i leave the house to pack my meds! ugh! love that! so much!)
showing genuine interest in how im coping by asking questions like "hey how is therapy going?" or "how's the physio?"
I really wish people would just call my issues by their names (after asking my permission/how I refer to them) I'm very open about my mental health disorders because I fell it should be normalised to talk about them. But most people just refer to it oh your issues or how is your...you know thing. Just say how's your depression or how is bpd therapy going. Even when we are out and about. Obviously not everyone is comfort with that but I told them multiple times that I am.
Video saved to share with my disability support class and the trainers so they can show it in the other dis 101 classes.
as a young person I didn't know or think of many of these and I hope they can create positive change in my life
I have very bad anxiety and have really depressive down days as well as a few food avoidances and intolerances and the one I hear a lot is that I'm being dramatic or picky or "what do I have to be sad about" and can't I get over it. so stressful sometimes to the point I just avoid talking about it. But spot on, on all these! and bunches of love to you ❤❤
big reminder that delivery can make or break this kind of thing, regardless of intention. I get "What _can_ you eat?" a lot with my selective stomach issues and I guess it just doesn't gel with me? It's usually given that exaggerated emphasis and preceded by the "What else can't you eat?" or "Can you eat [insert common food]?" that makes it sound like a person just giving up on being kind about it, or that I'm putting a lot of work on their shoulders making them come up with ideas.
“What can’t you eat “
Beautiful, wonderful thing to say . I have food allergies and Gerd , and so I have dietary restrictions, I’m on the gerd diet .
You are literally the prettiest person in the world!
“I think very young people might be human too.”
YES. THIS. JESSICA YOU ARE PRECIOUS. 🧒🧒🧒🧒🧒🧒🧒
I'd love a "Is this overwhelming?" Things get very overwhelming very quickly when you have an energy condition. Also when there's some sort of barrier in communication, like hearing loss or speech problems. So my friend or partner or sister or whoever noticing that I seem flustered and asking me if I'm overwhelmed and need to leave or take a break is very helpful.
Thank you for this video! I have a worsening condition, and it is hard to get used to being treated unkindly, or even being treated courteously and asked if I need things, because I feel like I'm a hassle. But this shows me that people are probably being honest, and they wouldn't ask unless they mean it. Keep up these wonderful videos!
that nap one is BRILLIANT
Ooooooh I really like the "Good Day/Bad Day" question! I hate when people ask "How are you doing?" because it's such a complicated answer. Asking what kind of day I'm having would streamline things! My best friend really gets it, she'll call me up and ask "Do you feel like peopling today?" and never gets mad or upset when I say no. That's why she's my favorite :)
Hi Lovely Person! I’d really like to see a video about the disabled person/person with disabilities terms, as it’s something I struggle with myself. I think I would put myself in the person first category, but it’s always good to hear another point of view on these matters. 👍💜☺️
Disabled Person expresses it as our status in societal/political terms.
The shame and feeling of letting people down when I'm not able to do something can be so overwhelming, and I really wish that when I don't manage to do something in a timely manner or at all they would say "it's okay" and maybe ask if I'm having a difficult day, or even ask if I'd be able to do it later but in a non judgemental way! The disappointed sigh my dad makes when I've been to exhausted to unload the dishwasher while he's at work is soul crushing.
I love Good Relative Jessica, she's so nice 😭💖
Sometimes it can feel a bit awkward to ask if someone “needs help.” It can come across as condescending, so if you’re getting a vibe that someone might take it that way - or if they look like they might need a little extra dignity that day - I find there is a good alternative: “Can I offer you some assistance?” This turns the focus away from what they can’t do and toward how you can be of service.
Thank you for explaining that in words. I get flustered trying to figure out how to offer assistance to strangers, or even people I don't know well, and this explanation makes it much clearer to me how to express what I mean to say.
I didnt realize I actually needed to hear a lot of the stuff at the end, but I guess as someone with a lot of mental illnesses it applies.
Your off the shoulder dresses are just so gorgeous, Jessica! Those are probably my favorite style of yours.
OH! The available guestroom one! It would be heaven to be offered, and not having to ask! And the 'are you having a good or a bad day' is fabulous too, if only to acknowledge that you know there are both of those days. Wonderful suggestions :-)
The question "are you having a good day or a bad day?" is actually something I'd rather my friends and family would use with me when it comes to my depression and anxiety. Because of the way my family has always dismissed it, I've grown up essentially conditioned to lie when asked "How are you?" which the answer is a reflexive "I'm good" or when someone notices something is wrong they may ask "Are you okay?" to which I almost always say "Yes I'm just tired". I feel like asking "Are you have a good day or bad day" infers an acceptance and validation. It really says "Hey, I know some days aren't good ones, and it's okay to let me know".
"I'm just right."
Sigh... I love this woman.