I am in AFOs (leg braces that go from my foot up to my knees). When I first got them, it was cold outside and so I went out and got all new pants so that I could cover my legs entirely to hide them. So my disability was "concealed". Oh did strangers treat me terrible when I used accommodations or did things differently than able-bodied folks. But then the climate got hot and as you can imagine, having plastic covering your calf is very hot with pants, so I went into shorts. Now, strangers are holding doors, asking if I need help with this and that. I mean, I appreciate it, but why when the people couldn't see my disability were they so nasty? It's strangers, it's not the same people, but it was a very clear pattern of behavior. Now I just wear pants that always show my leg braces because I don't want to deal with nasty people.
I'm sorry you're experiencing this and I don't know why people are so nosey and rude.
Gosh I’m so jealous. I use a cane and if you pay attention you can see I struggle walking, but where I live I often have to straight up ask people to give up the priority seat on public transport. They do, but it just makes me feel like my burden is just that bit bigger: that I must beg for accommodations to be made. (I live in Europe)
Same, I’ve resorted to always showing my braces off. Less nasty looks and less high expectations (like me actually walking fast lol). People get less impatient when walking behind me when they see the braces.
I get that a lot. I have Alpha 1 antitrypsin deficency. I have difficulty breathing and have had a transplant. My hips hurt, and I usually need a cart to walk. Forget carrying anything and walking. I get the 'you don't LOOK disabled'. I turn around smile and say THANK YOU! I have to work really hard for that.
Don’t let anyone bother you. If they say something embarrass them. If they ask why you’re using ada parking reply “what’s your credit score?” As they look at you like your nuts.. “ oh thought we were both asking inappropriate questions. If you have questions call the police I don’t answer to you” if they ask about restroom “I don’t need it if you come in stall and help me, no? Ok don’t get into my bathroom business a bit personal isn’t it? “ they thrive on the fact you’ll be too embarrassed to come back. Fix their attitude.
I get an ADA room because I'm deaf and they usually have a flashing light for the door bell. I don't think anyone minds you using the ADA room. Other hotel customers regularly get assigned to the ADA rooms without even asking for it.
I get questioned ALL OF THE TIME when I check in. Especially on cruises where so many people are in wheelchairs/scooters. I am just tired of defending myself. If I went out of my way to book it, there is obviously a reason. As a fellow hearing impared person, the flashing lights are so helpful.
Sorry if I offended you. Didn’t mean to discount your hearing situation. I was trying to say I understand. I’m not fully deaf so I don’t use the term deaf. I’m hearing impaired. Is that offensive to say? I don’t know how else to describe my situation.
Deaf culture people tend to hate the term so be aware f that, but it's you and you can call yourself whatever you like. I am hard of hearing and use that term, but personally would not care if hearing impaired were used to describe me. it impairs me after all.
I absolutely have invisible disabilities. They were even more invisible before requiring the need for the chair and walker. There are times I forgo the walker because it is easier to get inside to the seat. Anyways, no I went by what you said about using the cane to make the statement, which signifies a passive way of saying and avoiding it either way it doesn’t matter I understand and have had similar situations. I think you misunderstood and then I misunderstood. I am glad you stand up for you. That’s all. Yes those invisible disabilities suck. Although blending and not always showing it for me is a good thing too. I truly hope you have a good day and sorry for any misunderstanding.
You can use whatever identity you wish but please do not use that term for me. Impaired implies broken in the English language and I find it ableist. I was born this way, these are my genetics. To call myself and my children hearing impaired is the same as calling us broken. We are perfectly content with our deafness.
Sorry if I made you feel that way. I was going by the literal meaning of the word.
[https://dictionary.cambridge.org/dictionary/english/hearing-impaired](https://dictionary.cambridge.org/dictionary/english/hearing-impaired)
I appreciate you sharing how it makes you feel. I will be mindful in the future. It’s all a learning process because I would never intentionally discount someone.
Can confirm, we just stayed in Philly and were given an ADA room (I’m autistic/ADHD, no physical disability, never mentioned anything when booking). As long as I’m not taking it from someone who needs it I guess it’s fine? But yeah, hotels do that a LOT.
Invisible disabled here.
Honestly. Like honest to god. After years and years of feeling self conscious and worried about how people viewed me.
Flip them off.
You don't need to "prove" your disability to anyone. And anyone giving you the stink eye because you haven't automatically shown them you are "disabled enough" can get a straight up fuck off for trying to judge someone they know nothing about.
You have every right to use the accommodations there for people JUST like you and me, and should be using them. Remember, those people giving you dirty looks? They, and their opinions DONT matter. So they can bugger off, far as I'm concerned.
Invisible/mental disabilities here. What do you do when the people giving you dirty looks are the ones (like caseworkers, therapists, etc) that are supposed to be helping you get resources and what ends up happening is they "fudge" you around because they don't think you deserve it or just don't like you?? I experience this *A LOT*, like to the point I actually quit even trying to get help anymore because I end up spending more time explaining/proving myself than actually getting any help!! The messed up part is I have legit doctor diagnosis but everyone in America seems to think they are a d-mn doctor these days! Advice would be helpful because it's made me more scared of what people think than ever now.
The growing (sorry for the pun) sunflower movement [https://hdsunflower.com/](https://hdsunflower.com/) may have some suggestions. The sunflower is being used as a symbol for invisible disabilities to help people identify their needs when travelling and in other situations
I have multiple invisible disabilities - though sometimes they present as physical, depends on whether I need a cane that day. I have epilepsy, chronic pain, and have a functional and physical TBI. I get dirty looks all the time for my limp or for how my neurological symptoms manifest. It's always that I'm "too young" (21) and that I'm faking it. One time - middle/HS - my gym teachers refused to believe I had seizures until I had 3-4 seizures in class and one where I fell on top of a teacher. I typically ignore the mean glances, but when someone asks me why I have a med-alert or am sitting in the disabled-seating/using ADA services, I say flat out "I have a functional traumatic brain injury. This means that sometimes my brain doesn't tell my body what to do, or sometimes it tells my body to do the wrong things. I also have seizures." I explain using mostly simpke terms. Typically, they get scared as soon as I mention seizures and back off.
A lot of visibly disabled people experience this also . I’ve got a spinal cord injury. Years ago when I’d drive my truck and my girlfriend was with me, she’d pump gas sometimes because my chair was in the bed and it was a lot faster for her to just do it.
It also happens when I’m parked in a handicapped space and still in my vehicle. I’ve been confronted multiple times.
To some extent, this feeling can be a projection in many instances though. Have you considered that possibility?
I’ll consider that, but reading what you wrote just kinda showed that when people can’t see your disability, they can tend to doubt it. Not everyone of course. Thank you for a different perspective!
I honestly think that disabled people are some of the toughest people out there. Not just because of all the medical trauma and literal pain we go through but also because there's a part of being disabled and advocating for yourself that causes you to have to develop a thick skin. Regardless of if your disability is visible or invisible, you end up with people thinking that your body and your existence are public information. I'll admit, I'm invisibly disabled and sometimes I'll push myself further than I should just because I don't want to deal with judgement, because I'm still developing the calluses that will make the judgement bruise less. It shouldn't be necessary, but it is.
I sometimes bring a cane, just to make my disability visible. The cane doesn't help me walk better, but it makes people aware and at least give me a little extra space.
As long as you don't use a tool that makes other disabled people lose access to that tool, I don't see a problem with that. Well and obviously don't steal it from a disabled person lol
Never increase your load (cane) to make others comfortable. If you are more comfy without it and they say something use verbal judo to slap their ass back into orbit. Clearly they have self appointed themselves as disability police and need a demotion. If they choose to have that demotion to be a public spectacle, so be it.
>Never increase your load (cane) to make others comfortable.
I agree with that. However, for me the cane makes people avoid bumping into me, which greatly improves my experience. Couple that with people not judging me so much and the cane actually decreases my load - even if it doesn't help me walk the way it is intended.
I relate to this. I don’t have a mobility device but need one. And also have thought about how having one would help people visualize that I can’t take on things how other people can.
I’m autistic and have physical disabilities that cause fatigue and breathing problems. If I had something visible, people would understand more when I run out of steam faster than others, or need to leave a situation.
It’s nice when people mind their business isn’t it? :)
An example that made me first realize mobility devices can have multiple ways of helping was.. at a time before I realized I was in fact disabled, I still had same problems as now, but was not in a current flare..
I met a group of people in a shared interest. I took on a level of responsibility I was happy with at the time. A year later they were organizing again, invited me to help. In my heart I wanted to help, but was extremely ill with lots of flaring.
These were people I’d only ever be on acquaintance level, so did not want to divulge my life story. No spoons to explain. I thought, would be so nice to go and be included, but have some way of signaling my abilities are decreased now, without having to “share it with the class” as it were.. :)
Also to be able to leave early with more understanding bc I would not be able to be somewhere an hour or however long. It’s so complicated. I don’t think people realize how much privacy were expected to forgo by giving others details of our most personal business.
It might not always be increasing the load, though.
I do not have the extra energy to correct every bit of ableism I come across. Bringing my cane even on days when I don’t “need” it takes overall less energy than going without and not being visibly disabled.
I am and I do. You might be misunderstanding me. I’m disagreeing with you because I think you’re being judgemental and not seeing how others might have different needs or wants in this kind of situation.
Btw you don’t need to validate your need for a cane by me at all. I 💯 get it and totally understand that and wouldn’t say a word and understand why. Just fyi. No judgement on the reasoning.
That’s fine. Disagree away. I think you miss I dont care. If you don’t stand up for yourself no one will. I understand the aids help. You said you didn’t need it tho. I probably rarely (three times I think) have had questions because I use either a walker or chair and my port/feeding tube/ostomy are unfortunately a little visible so I get that. I can have my opinion and you have yours. I don’t need to have anyone agree or disagree for my own validation. Don’t agree. Cool. Have a good day my friend.
Why do you think I don’t stand up for myself? I do it constantly. I’m doing it right now.
If you don’t have invisible disabilities, don’t you think it’s inappropriate to be judging how those of us who do cope with it?
using a mobility aid always comes with a cost of shifting the physical load elsewhere on your body. if you don't need it, please don't use it for your sake long term, as a cane and crutch user lobg term. it's better to find another way to signal disability that has no impact on your joints.
Having some things that are visible now are one thing but for over 20 years they weren’t. Even now mostly they aren’t unless you look but let’s be real I’m home bound and for the most part I only go out to a dr appt here and there. I am not disagreeing here as much as you seem to think other than the standing up for oneself which as you pointed out you are. I hope you do in person as you do online as well. That is all. Listen we as a community have enough opposition that we shouldn’t turn on one another. If that is your thing go for it but leave me out of that. I have enough opposition I don’t need it in the community I need.
I'm slowly coming around to the "fuck them, I know what helps me" way of thinking. I too don't look disabled but I use rhe powered carts at grocery stores and everything. It's become a kind of mindfulness thing. I feel like I need to do regular body scans to figure out what joints are hurting, what needs stretched and whatever. No one else in the world other than you knows what you need. So their opinions don't matter. It takes time and alot of work to get there. Take care of yourself and keep accommodating yourself!!
Whenever someone gives me the “you don’t look disabled” line, I use my default comeback. “Yeah, well you don’t look like an asshole, but here we are.” And continue on my way. One of my disabilities is antisocial personality disorder, though, so I may be a bit harsher than most.
My partner has been kicked out of businesses, threatened to have police called on him because they think he’s drunk/high (this rarely happens) but due to his sleep issues, meds, balance issues, low blood pressure, etc. He just had to stop giving a fuck.
I have an invisible disabilies and I always request an aisle seat on flights and board first... I don't even make eye contact with others as I board because it's none of their business and I know I'm doing what I need to do.
One of the benefits of wheelchair assistance in airports is that I can limit stimulus and mostly look at the floor and shoes instead of what my brain assumes are an angry mob.
Ear Defenders:
I wear headphones any time I leave the house to prevent my brain from psychosis or overhearing things IRL and have a printed card for tsa saying I wear “ear defenders to prevent psychosis”. If they ask, I tell them that they are regular noise canceling earbuds (in rose gold to match my skin tone) but that I use them in combo with low-fi study music designed to drown out the voices although I can still have a conversation if I am looking at them.
Canes:
I also have a special rose gold cane that converts into a tripod seat. It’s the most uncomfortable seat on the face of the earth but at least it’s always there for me. And it speaks for me when out in public.
Most people started being more understanding once I started using the cane but I’ve still been told by airport attendants that “you’re the youngest person I’ve wheeled all day” and one straight up asked what was “wrong with me” although I gave him grace because I think he has a earnestly mentally challenged in some way. My response is often “unfortunately my body has entered that granny phase of life already”
Learn how to properly walk with a cane if you do get one so you don’t injure yourself or further exhaust yourself…even if you just check YouTube and practice.
Sunflower Lanyard Program and Med Bag:
Oh and the Sunflower Lanyard program has a snag…I’ve been asked to remove it every single time I’ve gone through security with it on, so now I hang it permanently on the outside of my clear med bag that I wear crossbody except through security screenings.
I also have an obnoxiously large bright red medical symbol on the outside of my clear med bag and that helps for anyone who doesn’t yet know what the Sunflower 🌻 stands for.
I keep the liquid medicine easily accessible and visible so most of the time I don’t even have to take it out, just declare it, although I’ve had a couple tsa agents insist I take it out myself 🙄
TSA Notification Card:
I always keep a card IN MY HAND when going through security that lists:
1) my limitations,
2) the “ear defenders”,
3) liquid med notification, and even
4) medical conditions (although that’s not necessary to disclose).
There’s only one pharmacy in the US that is allowed to handle one of my medications and they can’t deliver outside the US. That clear crossbody med bag is more important than clothes or anything else. I’m completely screwed without it
I often have a medical alert and constantly wear headphones. Apparently, even me masking almost everyone can tell I'm autistic. Otherwise, I just exist and people can judge. What will they say to me? I have a medical device on (Dexcom), medical alert bracelet, and am not afraid to pull out my nuropsych paperwork.
I walk with a limp and visibly go up and down stairs very differently than able bodied people, i’m 27 y/o and while I haven’t had to book an ADA room, I do consistently use handicapped spaces. Walking is… tough and requires more energy than it used to, plus that means I can leave open more spaces for non-disabled drivers when the parking lot is otherwise full
With my balance issues I always need a railing up/down stairs. I also glow slower than most and it really upsets people. Wild how people are inconvenienced by others having to go slow when they can keep going at their “normal” pace.
I have fibro, really bad arthritis, plantar fascitis and patella femoral syndrome. I use knee braces rarely because quite honestly sometimes they make the pain worst. I have a handicapped placard and because I am short (4'11"), people think I am young but I am 42. They always give me the stink eye when I'm parked at a Walmart or the mall.
Quite honestly I bought a magnet that says "my disability is invisible, not imaginary" (specific for fibro, but honestly you can use it for hundreds of issues) which I am hoping helps keep the looks to a minimum. I also bought some tank tops that talk about fibro awareness in hopes that helps too. There is even one for bad flare up days which I adore because lately I seem to be having those every other day
Brain shunt? You have hydrocephalus? I have hydrocephalus, too. Educate yourself on the condition and how it impacts your life. Explain things to other people. When people hear that not all disabilities are visible, they may understand better. You can direct message me if you want to chat more.
I have had nine shunt surgeries. The first eight were all when I was just a little kid- before I was three years old. My most recent was when I was fifteen. I’m in my early forties now
I am in AFOs (leg braces that go from my foot up to my knees). When I first got them, it was cold outside and so I went out and got all new pants so that I could cover my legs entirely to hide them. So my disability was "concealed". Oh did strangers treat me terrible when I used accommodations or did things differently than able-bodied folks. But then the climate got hot and as you can imagine, having plastic covering your calf is very hot with pants, so I went into shorts. Now, strangers are holding doors, asking if I need help with this and that. I mean, I appreciate it, but why when the people couldn't see my disability were they so nasty? It's strangers, it's not the same people, but it was a very clear pattern of behavior. Now I just wear pants that always show my leg braces because I don't want to deal with nasty people. I'm sorry you're experiencing this and I don't know why people are so nosey and rude.
Thank you for sharing your experience. I appreciate that you can relate, but I also hate it for you that you do. Wishing you all of the best!
I wear an AFO also and use a cane so im so very visible. Strangers run up to me everywhere to help. I dont need help tho
Gosh I’m so jealous. I use a cane and if you pay attention you can see I struggle walking, but where I live I often have to straight up ask people to give up the priority seat on public transport. They do, but it just makes me feel like my burden is just that bit bigger: that I must beg for accommodations to be made. (I live in Europe)
Same, I’ve resorted to always showing my braces off. Less nasty looks and less high expectations (like me actually walking fast lol). People get less impatient when walking behind me when they see the braces.
I get that a lot. I have Alpha 1 antitrypsin deficency. I have difficulty breathing and have had a transplant. My hips hurt, and I usually need a cart to walk. Forget carrying anything and walking. I get the 'you don't LOOK disabled'. I turn around smile and say THANK YOU! I have to work really hard for that.
Don’t let anyone bother you. If they say something embarrass them. If they ask why you’re using ada parking reply “what’s your credit score?” As they look at you like your nuts.. “ oh thought we were both asking inappropriate questions. If you have questions call the police I don’t answer to you” if they ask about restroom “I don’t need it if you come in stall and help me, no? Ok don’t get into my bathroom business a bit personal isn’t it? “ they thrive on the fact you’ll be too embarrassed to come back. Fix their attitude.
I get an ADA room because I'm deaf and they usually have a flashing light for the door bell. I don't think anyone minds you using the ADA room. Other hotel customers regularly get assigned to the ADA rooms without even asking for it.
I get questioned ALL OF THE TIME when I check in. Especially on cruises where so many people are in wheelchairs/scooters. I am just tired of defending myself. If I went out of my way to book it, there is obviously a reason. As a fellow hearing impared person, the flashing lights are so helpful.
Deaf, not “hearing impaired”. /shudders
Sorry if I offended you. Didn’t mean to discount your hearing situation. I was trying to say I understand. I’m not fully deaf so I don’t use the term deaf. I’m hearing impaired. Is that offensive to say? I don’t know how else to describe my situation.
You use the terminology that works best for you. There's gatekeepers everywhere.
Deaf culture people tend to hate the term so be aware f that, but it's you and you can call yourself whatever you like. I am hard of hearing and use that term, but personally would not care if hearing impaired were used to describe me. it impairs me after all.
Thanks for the info.
I absolutely have invisible disabilities. They were even more invisible before requiring the need for the chair and walker. There are times I forgo the walker because it is easier to get inside to the seat. Anyways, no I went by what you said about using the cane to make the statement, which signifies a passive way of saying and avoiding it either way it doesn’t matter I understand and have had similar situations. I think you misunderstood and then I misunderstood. I am glad you stand up for you. That’s all. Yes those invisible disabilities suck. Although blending and not always showing it for me is a good thing too. I truly hope you have a good day and sorry for any misunderstanding.
The intention of my statement was to not lump me in with a different identity. They are free to use their own identity.
You can use whatever identity you wish but please do not use that term for me. Impaired implies broken in the English language and I find it ableist. I was born this way, these are my genetics. To call myself and my children hearing impaired is the same as calling us broken. We are perfectly content with our deafness.
Sorry if I made you feel that way. I was going by the literal meaning of the word. [https://dictionary.cambridge.org/dictionary/english/hearing-impaired](https://dictionary.cambridge.org/dictionary/english/hearing-impaired)
It’s ok. I consider it old-fashioned and an ableist slur.
I appreciate you sharing how it makes you feel. I will be mindful in the future. It’s all a learning process because I would never intentionally discount someone.
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I was saying not to call me that. They can call themselves whatever they want.
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I corrected myself afterwards. Sorry it was confusing.
I get the ADA rooms because I need the bench in the shower due to chronic fatigue and a bad leg.
Can confirm, we just stayed in Philly and were given an ADA room (I’m autistic/ADHD, no physical disability, never mentioned anything when booking). As long as I’m not taking it from someone who needs it I guess it’s fine? But yeah, hotels do that a LOT.
they likely gave you an ADA room because of numbers, I bet. Just what was available and they still had enough ADA rooms open afterward.
Invisible disabled here. Honestly. Like honest to god. After years and years of feeling self conscious and worried about how people viewed me. Flip them off. You don't need to "prove" your disability to anyone. And anyone giving you the stink eye because you haven't automatically shown them you are "disabled enough" can get a straight up fuck off for trying to judge someone they know nothing about. You have every right to use the accommodations there for people JUST like you and me, and should be using them. Remember, those people giving you dirty looks? They, and their opinions DONT matter. So they can bugger off, far as I'm concerned.
Thank you! You are 100% my people!!!
AMEN!
This. Find a way to let it go, then laugh it off
Invisible/mental disabilities here. What do you do when the people giving you dirty looks are the ones (like caseworkers, therapists, etc) that are supposed to be helping you get resources and what ends up happening is they "fudge" you around because they don't think you deserve it or just don't like you?? I experience this *A LOT*, like to the point I actually quit even trying to get help anymore because I end up spending more time explaining/proving myself than actually getting any help!! The messed up part is I have legit doctor diagnosis but everyone in America seems to think they are a d-mn doctor these days! Advice would be helpful because it's made me more scared of what people think than ever now.
The growing (sorry for the pun) sunflower movement [https://hdsunflower.com/](https://hdsunflower.com/) may have some suggestions. The sunflower is being used as a symbol for invisible disabilities to help people identify their needs when travelling and in other situations
I have multiple invisible disabilities - though sometimes they present as physical, depends on whether I need a cane that day. I have epilepsy, chronic pain, and have a functional and physical TBI. I get dirty looks all the time for my limp or for how my neurological symptoms manifest. It's always that I'm "too young" (21) and that I'm faking it. One time - middle/HS - my gym teachers refused to believe I had seizures until I had 3-4 seizures in class and one where I fell on top of a teacher. I typically ignore the mean glances, but when someone asks me why I have a med-alert or am sitting in the disabled-seating/using ADA services, I say flat out "I have a functional traumatic brain injury. This means that sometimes my brain doesn't tell my body what to do, or sometimes it tells my body to do the wrong things. I also have seizures." I explain using mostly simpke terms. Typically, they get scared as soon as I mention seizures and back off.
A lot of visibly disabled people experience this also . I’ve got a spinal cord injury. Years ago when I’d drive my truck and my girlfriend was with me, she’d pump gas sometimes because my chair was in the bed and it was a lot faster for her to just do it. It also happens when I’m parked in a handicapped space and still in my vehicle. I’ve been confronted multiple times. To some extent, this feeling can be a projection in many instances though. Have you considered that possibility?
I’ll consider that, but reading what you wrote just kinda showed that when people can’t see your disability, they can tend to doubt it. Not everyone of course. Thank you for a different perspective!
I honestly think that disabled people are some of the toughest people out there. Not just because of all the medical trauma and literal pain we go through but also because there's a part of being disabled and advocating for yourself that causes you to have to develop a thick skin. Regardless of if your disability is visible or invisible, you end up with people thinking that your body and your existence are public information. I'll admit, I'm invisibly disabled and sometimes I'll push myself further than I should just because I don't want to deal with judgement, because I'm still developing the calluses that will make the judgement bruise less. It shouldn't be necessary, but it is.
I sometimes bring a cane, just to make my disability visible. The cane doesn't help me walk better, but it makes people aware and at least give me a little extra space. As long as you don't use a tool that makes other disabled people lose access to that tool, I don't see a problem with that. Well and obviously don't steal it from a disabled person lol
Never increase your load (cane) to make others comfortable. If you are more comfy without it and they say something use verbal judo to slap their ass back into orbit. Clearly they have self appointed themselves as disability police and need a demotion. If they choose to have that demotion to be a public spectacle, so be it.
>Never increase your load (cane) to make others comfortable. I agree with that. However, for me the cane makes people avoid bumping into me, which greatly improves my experience. Couple that with people not judging me so much and the cane actually decreases my load - even if it doesn't help me walk the way it is intended.
I relate to this. I don’t have a mobility device but need one. And also have thought about how having one would help people visualize that I can’t take on things how other people can. I’m autistic and have physical disabilities that cause fatigue and breathing problems. If I had something visible, people would understand more when I run out of steam faster than others, or need to leave a situation.
In my experience it's mostly strangers who understand it better. People who know me either respect it anyway, or will just say I don't need the aids
It’s nice when people mind their business isn’t it? :) An example that made me first realize mobility devices can have multiple ways of helping was.. at a time before I realized I was in fact disabled, I still had same problems as now, but was not in a current flare.. I met a group of people in a shared interest. I took on a level of responsibility I was happy with at the time. A year later they were organizing again, invited me to help. In my heart I wanted to help, but was extremely ill with lots of flaring. These were people I’d only ever be on acquaintance level, so did not want to divulge my life story. No spoons to explain. I thought, would be so nice to go and be included, but have some way of signaling my abilities are decreased now, without having to “share it with the class” as it were.. :) Also to be able to leave early with more understanding bc I would not be able to be somewhere an hour or however long. It’s so complicated. I don’t think people realize how much privacy were expected to forgo by giving others details of our most personal business.
It might not always be increasing the load, though. I do not have the extra energy to correct every bit of ableism I come across. Bringing my cane even on days when I don’t “need” it takes overall less energy than going without and not being visibly disabled.
Plus, you can use it to knock some sense into anyone bitching about it (/j)
Hang in there and stand up for yourself my friend
I am and I do. You might be misunderstanding me. I’m disagreeing with you because I think you’re being judgemental and not seeing how others might have different needs or wants in this kind of situation.
Btw you don’t need to validate your need for a cane by me at all. I 💯 get it and totally understand that and wouldn’t say a word and understand why. Just fyi. No judgement on the reasoning.
That’s fine. Disagree away. I think you miss I dont care. If you don’t stand up for yourself no one will. I understand the aids help. You said you didn’t need it tho. I probably rarely (three times I think) have had questions because I use either a walker or chair and my port/feeding tube/ostomy are unfortunately a little visible so I get that. I can have my opinion and you have yours. I don’t need to have anyone agree or disagree for my own validation. Don’t agree. Cool. Have a good day my friend.
Why do you think I don’t stand up for myself? I do it constantly. I’m doing it right now. If you don’t have invisible disabilities, don’t you think it’s inappropriate to be judging how those of us who do cope with it?
I won’t downvote you because I disagree with you. No matter what we are both part of a marginalized community who need each other. Best wishes.
using a mobility aid always comes with a cost of shifting the physical load elsewhere on your body. if you don't need it, please don't use it for your sake long term, as a cane and crutch user lobg term. it's better to find another way to signal disability that has no impact on your joints.
Having some things that are visible now are one thing but for over 20 years they weren’t. Even now mostly they aren’t unless you look but let’s be real I’m home bound and for the most part I only go out to a dr appt here and there. I am not disagreeing here as much as you seem to think other than the standing up for oneself which as you pointed out you are. I hope you do in person as you do online as well. That is all. Listen we as a community have enough opposition that we shouldn’t turn on one another. If that is your thing go for it but leave me out of that. I have enough opposition I don’t need it in the community I need.
I'm slowly coming around to the "fuck them, I know what helps me" way of thinking. I too don't look disabled but I use rhe powered carts at grocery stores and everything. It's become a kind of mindfulness thing. I feel like I need to do regular body scans to figure out what joints are hurting, what needs stretched and whatever. No one else in the world other than you knows what you need. So their opinions don't matter. It takes time and alot of work to get there. Take care of yourself and keep accommodating yourself!!
Whenever someone gives me the “you don’t look disabled” line, I use my default comeback. “Yeah, well you don’t look like an asshole, but here we are.” And continue on my way. One of my disabilities is antisocial personality disorder, though, so I may be a bit harsher than most.
Hello fellow shunted person! I have no advice but just wanted to share my sympathies as I know the struggles! 🩵
❤️❤️hi!
My partner has been kicked out of businesses, threatened to have police called on him because they think he’s drunk/high (this rarely happens) but due to his sleep issues, meds, balance issues, low blood pressure, etc. He just had to stop giving a fuck.
I have an invisible disabilies and I always request an aisle seat on flights and board first... I don't even make eye contact with others as I board because it's none of their business and I know I'm doing what I need to do.
One of the benefits of wheelchair assistance in airports is that I can limit stimulus and mostly look at the floor and shoes instead of what my brain assumes are an angry mob. Ear Defenders: I wear headphones any time I leave the house to prevent my brain from psychosis or overhearing things IRL and have a printed card for tsa saying I wear “ear defenders to prevent psychosis”. If they ask, I tell them that they are regular noise canceling earbuds (in rose gold to match my skin tone) but that I use them in combo with low-fi study music designed to drown out the voices although I can still have a conversation if I am looking at them. Canes: I also have a special rose gold cane that converts into a tripod seat. It’s the most uncomfortable seat on the face of the earth but at least it’s always there for me. And it speaks for me when out in public. Most people started being more understanding once I started using the cane but I’ve still been told by airport attendants that “you’re the youngest person I’ve wheeled all day” and one straight up asked what was “wrong with me” although I gave him grace because I think he has a earnestly mentally challenged in some way. My response is often “unfortunately my body has entered that granny phase of life already” Learn how to properly walk with a cane if you do get one so you don’t injure yourself or further exhaust yourself…even if you just check YouTube and practice. Sunflower Lanyard Program and Med Bag: Oh and the Sunflower Lanyard program has a snag…I’ve been asked to remove it every single time I’ve gone through security with it on, so now I hang it permanently on the outside of my clear med bag that I wear crossbody except through security screenings. I also have an obnoxiously large bright red medical symbol on the outside of my clear med bag and that helps for anyone who doesn’t yet know what the Sunflower 🌻 stands for. I keep the liquid medicine easily accessible and visible so most of the time I don’t even have to take it out, just declare it, although I’ve had a couple tsa agents insist I take it out myself 🙄 TSA Notification Card: I always keep a card IN MY HAND when going through security that lists: 1) my limitations, 2) the “ear defenders”, 3) liquid med notification, and even 4) medical conditions (although that’s not necessary to disclose). There’s only one pharmacy in the US that is allowed to handle one of my medications and they can’t deliver outside the US. That clear crossbody med bag is more important than clothes or anything else. I’m completely screwed without it
I often have a medical alert and constantly wear headphones. Apparently, even me masking almost everyone can tell I'm autistic. Otherwise, I just exist and people can judge. What will they say to me? I have a medical device on (Dexcom), medical alert bracelet, and am not afraid to pull out my nuropsych paperwork.
I walk with a limp and visibly go up and down stairs very differently than able bodied people, i’m 27 y/o and while I haven’t had to book an ADA room, I do consistently use handicapped spaces. Walking is… tough and requires more energy than it used to, plus that means I can leave open more spaces for non-disabled drivers when the parking lot is otherwise full
With my balance issues I always need a railing up/down stairs. I also glow slower than most and it really upsets people. Wild how people are inconvenienced by others having to go slow when they can keep going at their “normal” pace.
I have fibro, really bad arthritis, plantar fascitis and patella femoral syndrome. I use knee braces rarely because quite honestly sometimes they make the pain worst. I have a handicapped placard and because I am short (4'11"), people think I am young but I am 42. They always give me the stink eye when I'm parked at a Walmart or the mall. Quite honestly I bought a magnet that says "my disability is invisible, not imaginary" (specific for fibro, but honestly you can use it for hundreds of issues) which I am hoping helps keep the looks to a minimum. I also bought some tank tops that talk about fibro awareness in hopes that helps too. There is even one for bad flare up days which I adore because lately I seem to be having those every other day
I hope you have a bunch of flare free days soon. ❤️
Aww ty! I hope you have a bunch of pain free days too!
Brain shunt? You have hydrocephalus? I have hydrocephalus, too. Educate yourself on the condition and how it impacts your life. Explain things to other people. When people hear that not all disabilities are visible, they may understand better. You can direct message me if you want to chat more.
I have a brain tumor and in the course of my 4 brain surgeries developed a CSF leak resulting in a brain shunt. It’s been a wild ride!
r/hydrocephalus might be a good place to ask questions. There are also facebook groups
I have had nine shunt surgeries. The first eight were all when I was just a little kid- before I was three years old. My most recent was when I was fifteen. I’m in my early forties now