Blind and Visually Impaired Community
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Sometimes I get really frustrated about my own family's lack of understanding and their reluctance to be educated. Do others here feel the same? (self.Blind)
submitted by Arcane_Panacea
I guess this post is directed mostly towards people who lost their sight later in life but anyone may share their opinion/experience. I'm sorry this is going to be rather long.
I was born with a severe visual impairment. At age 14, I went completely blind on my left eye (no light reception, nothing). However, until my early 20s, the vision on my right eye remained at around 20/200. While this was certainly not much, it was enough for me to fake being a sighted person. I did a pretty good job at this. I attended public schools, rode my bicycle, went backpacking with friends. I did all the things sighted people do, too. Of course people knew I was almost blind but now, 10-15 years later, I understand they never *truly* knew. I made things very easy for my friends and family by expecting only the most basic amount of consideration without actually needing help in any real way. They were not inconvenienced significantly by my disability but at the same time, they could pat their own shoulders for being such great people. For example my friends would ask me about my condition and assist me with small things but when we got in a dangerous situation once because we had done something stupid and we had to run away from a group of people in the dark, nobody grabbed my hand and pulled me along. Nobody waited to show me the way. Nobody made sure I was going to make it.
At the time, I didn't think much about this stuff. I was so used to acting my fake sighted role that it wasn't really an act anymore. It was me... I was proud of being able to act almost like an able-bodied person.
Then, it all changed. Around the age of 26, the vision on my right eye suddenly began to decrease at a dramatic speed. I'll save you the details but basically, I have gone almost entirely blind during the past 7 years. I still see colors and light and some blurry shapes but I don't have any functional eyesight left.
Obviously, this has changed my entire life. I've gone through a depression whose depth makes the Mariana Trench look like a shallow valley. I've had to re-learn how to live.
But there's one big problem I could've never anticipated. While I fought like a lion and am now slowly beginning to accept my new life, my family still views me the way they did when I was a child. Rationally, they know I've gone blind but I can tell they're not willing to genuinely accept this knowledge. At first I thought it was because they felt bad for me but then I realized it's because my disability makes them uncomfortable. To use an analogy, imagine you're sitting on the bus and a guy sits down next to you. He's got some skin problem that makes him sweat profusely and smells absolutely horrible. You feel very bothered by this. You also feel bad for feeling bothered (it's not his fault after all) but you mostly feel bothered. "I'm sorry about his skin problem but why couldn't this stinky guy sit somewhere else?!" you ask yourself. My family seems to feel this way about my blindness. Whenever I mention it, I can FEEL how they're sighing inside and rolling their eyes. I can feel how they're thinking: "jesus, not this AGAIN."
Yet, if I don't say anything, they act very indifferently and show very little consideration. Here's a recent example: my family has this group chat on Whatsapp. For ages they've been bugging me to join. Everyone else is in there, my parents, siblings, my siblings' romantic partners and my wife. I was the only one who wasn't a member, mostly because I thought it was kinda unnecessary. In order to make them happy, I finally gave in and joined. But soon I had to learn that at least 50% of what my family does in this chat is sharing pictures. Some of them go traveling a lot and they share pictures of that (everyone else comments). Others share pictures of things they've seen, cute pics with friends, my sister's infant baby... anything. As you can imagine, I feel COMPLETELY isolated in that chat group. I actually feel WORSE than I did *before* joining the group. Before I was just minding my own business, now I feel lonely and isolated in a very active way. Nobody bothers to tell me what's on the photos. They so desperately wanted me to be a part of this chat group but now they're excluding me from most of their conversations. Aside from the pictures, they also use a ton of emojis. This is not quite as bad because VoiceOver can read them to me but somehow it still rubs me the wrong way. They know I see very little and they DON'T know that VoiceOver can help me with the emojis, yet they choose to communicate with tiny stupid pictograms.
When I asked my family to act a little more inclusive/understanding, the general reaction was sulkiness and sarcasm. My sister wrote: "So we can't show pictures to each other anymore just because you're blind?! Seems pretty damn selfish to me." Other comments went in a similar direction. When I then said: "In that case, I will leave this group chat again", everyone accused me of acting in an immature, oversensitive manner.
Here's a similar example, also from recent times. Since I've been a child, the Christmas dinner in my family has been Fondue Bourguignon. It consists of a pot of boiling oil that you put in the center of the table (on gas stove) and everyone can then fry pieces of meat in that pot. Most people in my family love the dish but I hate it because it scares me so much. It was already scary when I was young and had better eyesight but it's even much scarier now. The oil splashes and sometimes you get hit on your arms or in your face. I'm terrified that one day, a drop of boiling hot oil will fly directly into my eye. If this happens, all of my remaining vision (which is EXTREMELY precious to me) will be gone. When I told my family that I'd like to have a different Christmas dish, most of them got annoyed. They said: "Everyone except from you loves this dish, there's a clear majority in favor of it, why are you trying to ruin Christmas dinner for everyone else??" My mom offered that I could sit by myself at a table nearby and my wife could fry the meat for me and hand it over to me. But like... this would make me feel like I'm a dog or something. I would once again feel completely excluded. When I told my mom I wouldn't come for Christmas (we usually celebrate it at our parents' place) if they insist on making this dish, she got angry and called me asocial. She also accused me of potentially ruining Christmas for my wife because if I stay home, my wife stays home, too (her parents live far away, in an other country).
I'm at a loss. The only person in my life who truly and genuinely understands me is my wife. For that alone I love her to bits. But everyone else seems to feel soooo bothered by my blindness. Every compromise or act of consideration they need to make is a nuisance to them. I think they just want me to be that fake sighted person again and they can't accept that I'm being so "demanding" now. Every time I ask someone for a ride, they're like: "uuuggghh okay if I must". It makes me feel like shit. I constantly feel like I need to apologize for being blind and needing assistance or accommodations. What sucks most about all of this is the fact that it's my own family. You see, my wife always tells me: "I know it's frustrating but you've got to educate them." I don't mind educating work colleagues or other people I get to know. I don't mind telling a police officer that I'd rather grab his arm instead of him grabbing mine and dragging me across the street. That's no problem. But somehow, I feel like my family should know these things. Clearly, they don't but that's frustrating. And it's also frustrating that they react with so much reluctance when I try to educate them or ask for accommodations.
Has anyone else here made similar experiences? Are there people who get me? I hope so....
I'm sorry this became so long.
I was born with a severe visual impairment. At age 14, I went completely blind on my left eye (no light reception, nothing). However, until my early 20s, the vision on my right eye remained at around 20/200. While this was certainly not much, it was enough for me to fake being a sighted person. I did a pretty good job at this. I attended public schools, rode my bicycle, went backpacking with friends. I did all the things sighted people do, too. Of course people knew I was almost blind but now, 10-15 years later, I understand they never *truly* knew. I made things very easy for my friends and family by expecting only the most basic amount of consideration without actually needing help in any real way. They were not inconvenienced significantly by my disability but at the same time, they could pat their own shoulders for being such great people. For example my friends would ask me about my condition and assist me with small things but when we got in a dangerous situation once because we had done something stupid and we had to run away from a group of people in the dark, nobody grabbed my hand and pulled me along. Nobody waited to show me the way. Nobody made sure I was going to make it.
At the time, I didn't think much about this stuff. I was so used to acting my fake sighted role that it wasn't really an act anymore. It was me... I was proud of being able to act almost like an able-bodied person.
Then, it all changed. Around the age of 26, the vision on my right eye suddenly began to decrease at a dramatic speed. I'll save you the details but basically, I have gone almost entirely blind during the past 7 years. I still see colors and light and some blurry shapes but I don't have any functional eyesight left.
Obviously, this has changed my entire life. I've gone through a depression whose depth makes the Mariana Trench look like a shallow valley. I've had to re-learn how to live.
But there's one big problem I could've never anticipated. While I fought like a lion and am now slowly beginning to accept my new life, my family still views me the way they did when I was a child. Rationally, they know I've gone blind but I can tell they're not willing to genuinely accept this knowledge. At first I thought it was because they felt bad for me but then I realized it's because my disability makes them uncomfortable. To use an analogy, imagine you're sitting on the bus and a guy sits down next to you. He's got some skin problem that makes him sweat profusely and smells absolutely horrible. You feel very bothered by this. You also feel bad for feeling bothered (it's not his fault after all) but you mostly feel bothered. "I'm sorry about his skin problem but why couldn't this stinky guy sit somewhere else?!" you ask yourself. My family seems to feel this way about my blindness. Whenever I mention it, I can FEEL how they're sighing inside and rolling their eyes. I can feel how they're thinking: "jesus, not this AGAIN."
Yet, if I don't say anything, they act very indifferently and show very little consideration. Here's a recent example: my family has this group chat on Whatsapp. For ages they've been bugging me to join. Everyone else is in there, my parents, siblings, my siblings' romantic partners and my wife. I was the only one who wasn't a member, mostly because I thought it was kinda unnecessary. In order to make them happy, I finally gave in and joined. But soon I had to learn that at least 50% of what my family does in this chat is sharing pictures. Some of them go traveling a lot and they share pictures of that (everyone else comments). Others share pictures of things they've seen, cute pics with friends, my sister's infant baby... anything. As you can imagine, I feel COMPLETELY isolated in that chat group. I actually feel WORSE than I did *before* joining the group. Before I was just minding my own business, now I feel lonely and isolated in a very active way. Nobody bothers to tell me what's on the photos. They so desperately wanted me to be a part of this chat group but now they're excluding me from most of their conversations. Aside from the pictures, they also use a ton of emojis. This is not quite as bad because VoiceOver can read them to me but somehow it still rubs me the wrong way. They know I see very little and they DON'T know that VoiceOver can help me with the emojis, yet they choose to communicate with tiny stupid pictograms.
When I asked my family to act a little more inclusive/understanding, the general reaction was sulkiness and sarcasm. My sister wrote: "So we can't show pictures to each other anymore just because you're blind?! Seems pretty damn selfish to me." Other comments went in a similar direction. When I then said: "In that case, I will leave this group chat again", everyone accused me of acting in an immature, oversensitive manner.
Here's a similar example, also from recent times. Since I've been a child, the Christmas dinner in my family has been Fondue Bourguignon. It consists of a pot of boiling oil that you put in the center of the table (on gas stove) and everyone can then fry pieces of meat in that pot. Most people in my family love the dish but I hate it because it scares me so much. It was already scary when I was young and had better eyesight but it's even much scarier now. The oil splashes and sometimes you get hit on your arms or in your face. I'm terrified that one day, a drop of boiling hot oil will fly directly into my eye. If this happens, all of my remaining vision (which is EXTREMELY precious to me) will be gone. When I told my family that I'd like to have a different Christmas dish, most of them got annoyed. They said: "Everyone except from you loves this dish, there's a clear majority in favor of it, why are you trying to ruin Christmas dinner for everyone else??" My mom offered that I could sit by myself at a table nearby and my wife could fry the meat for me and hand it over to me. But like... this would make me feel like I'm a dog or something. I would once again feel completely excluded. When I told my mom I wouldn't come for Christmas (we usually celebrate it at our parents' place) if they insist on making this dish, she got angry and called me asocial. She also accused me of potentially ruining Christmas for my wife because if I stay home, my wife stays home, too (her parents live far away, in an other country).
I'm at a loss. The only person in my life who truly and genuinely understands me is my wife. For that alone I love her to bits. But everyone else seems to feel soooo bothered by my blindness. Every compromise or act of consideration they need to make is a nuisance to them. I think they just want me to be that fake sighted person again and they can't accept that I'm being so "demanding" now. Every time I ask someone for a ride, they're like: "uuuggghh okay if I must". It makes me feel like shit. I constantly feel like I need to apologize for being blind and needing assistance or accommodations. What sucks most about all of this is the fact that it's my own family. You see, my wife always tells me: "I know it's frustrating but you've got to educate them." I don't mind educating work colleagues or other people I get to know. I don't mind telling a police officer that I'd rather grab his arm instead of him grabbing mine and dragging me across the street. That's no problem. But somehow, I feel like my family should know these things. Clearly, they don't but that's frustrating. And it's also frustrating that they react with so much reluctance when I try to educate them or ask for accommodations.
Has anyone else here made similar experiences? Are there people who get me? I hope so....
I'm sorry this became so long.
SextupleTrex 12 points 1y ago
Sounds like your family is ableist and unwilling to be inclusive, that's extremely shit. They seem to have the mindset that they can't do the things they like to do because of your disability, when really you're just asking them to make accomodations so that you can be involved. It sounds like you've already tried to explain this to them but they are defensive and shrug you off.
Something as simple as providing text with a picture to explain what's in it isn't hard. I do it for my blind and low vision friends. It takes 30 seconds, if that. But for some people, it's somehow the hardest thing in the world and apparently their minor convenience is more valuable than ensuring that you're being included in your family.
Your family may always be difficult to deal with when they have this attitude. I just know, in blind and accessibility communities, we get it and go above and beyond for inclusion. I recommend reaching out to them if you haven't already, you will find similar experiences and people who understand you.
Also, The boiling pot of the oil thing sounds horrific and I'm sighted.
Something as simple as providing text with a picture to explain what's in it isn't hard. I do it for my blind and low vision friends. It takes 30 seconds, if that. But for some people, it's somehow the hardest thing in the world and apparently their minor convenience is more valuable than ensuring that you're being included in your family.
Your family may always be difficult to deal with when they have this attitude. I just know, in blind and accessibility communities, we get it and go above and beyond for inclusion. I recommend reaching out to them if you haven't already, you will find similar experiences and people who understand you.
Also, The boiling pot of the oil thing sounds horrific and I'm sighted.
letspaintthesky 11 points 1y ago
Ew. I'm so sorry you have to deal with these unpleasant people.
My experiences are all pretty different to yours, but I do often have to loudly and pointedly announce for example, "I'm visually impaired, I'm not risking touching a spider on a black chair that I can't see" (this chair was folded in a dark shadowed corner. Also, I'm Australian-spiders are pretty much all trying to kill you here AND I'm severely arachnophobic-it just smacks of "God, I'm so fucking sick of accommodating you!")
I've been VI all my life and they still try the 'no one can see that' when I know damn well that if they wore their glasses they could see stuff that I can't.
I do understand being treated as an inconvenience when I have to remind them I can't see all the thing they can.
Also, that pot of boiling oil thing? Fuck that. As a teenager I worked briefly as a fry cook (I could still fake sighted back then) in a fast food chain, and would deep/shallow fry my own foods at home, but I'm fortunate that my mother understands that I can't take that risk anymore (I'm also very dizzy and clumsy and ALWAYS get burned when I use oil) and will happily deep fry for me if I ask.
It sounds like you got a shit bunch of people for a family. You deserve better than the way they're treating you. I'd leave the WhatsApp group-I mean, they bitched and bullied you into joining, outwardly exclude you in several ways, and then try to make their behaviour YOUR fault. Screw them.
My experiences are all pretty different to yours, but I do often have to loudly and pointedly announce for example, "I'm visually impaired, I'm not risking touching a spider on a black chair that I can't see" (this chair was folded in a dark shadowed corner. Also, I'm Australian-spiders are pretty much all trying to kill you here AND I'm severely arachnophobic-it just smacks of "God, I'm so fucking sick of accommodating you!")
I've been VI all my life and they still try the 'no one can see that' when I know damn well that if they wore their glasses they could see stuff that I can't.
I do understand being treated as an inconvenience when I have to remind them I can't see all the thing they can.
Also, that pot of boiling oil thing? Fuck that. As a teenager I worked briefly as a fry cook (I could still fake sighted back then) in a fast food chain, and would deep/shallow fry my own foods at home, but I'm fortunate that my mother understands that I can't take that risk anymore (I'm also very dizzy and clumsy and ALWAYS get burned when I use oil) and will happily deep fry for me if I ask.
It sounds like you got a shit bunch of people for a family. You deserve better than the way they're treating you. I'd leave the WhatsApp group-I mean, they bitched and bullied you into joining, outwardly exclude you in several ways, and then try to make their behaviour YOUR fault. Screw them.
Arcane_Panacea [OP] 2 points 1y ago
Thank you for your reply. Yeah, a lot of it does actually feel like gaslighting, now that you say it.
On a different note, I can totally relate to that spider thing! I don't have any problems with spiders and I live in Europe, so they're pretty small and harmless here. However, I've got an absolutely horrible phobia of snails, slugs and especially worms. I've got no idea where this comes from but since I was a little child, I've had this phobia. I know that other people don't like these animals either and find them nasty or at least unpleasant but for me it's far worse than that. I get serious panic attacks when I come too close to one of these things. I remember one time in elementary school during recess, some boy put a slug on the palm of his hand (ewwww...) and attempted to stick it down my t-shirt. Fortunately, my eyesight was better back then, so I saw him coming. I stumbled back a few steps and told him to stop immediately and go away. Instead, he tried to run towards me or throw the slug at me. I ran away across the schoolyard and the other boy ran after me. I soon realized that I had no chance of outrunning him; I was legally blind, he was fully sighted. So, in my panic I picked up a rock and threw it at him. The rock hit him right on the forehead and he began to cry like a baby. I felt a little bad but only a little. 10 minutes later I was scolded by a teacher and told I'd have to stay after school if anything like that ever happened again but I didn't even bother to listen. I was just extremely glad that I had managed to avoid having a slug in my hair or down my t-shirt or underwear. I would've preferred any punishment a teacher could think of over that slug.
Now that I'm an adult, I still hate those animals. One time I was cutting a tomato when my wife shrieked and told me to stop. She first didn't want to tell me what's going on but when I pushed her, she said there was a huge worm on the cutting board. Not a catterpillar, I can deal with those. A worm. Since that day, I always feel super uncomfortable whenever I chop veggies, especially if my wife isn't anywhere nearby. I think being blind (or visually impaired) makes these phobias so much worse. If you can't even see the thing you're scared of, you get kinda paranoid after a while. At least for me it feels like they could be anywhere all the time. Every time I step outside after it has rained a lot, I wonder what's creeping across the little garden path that leads from our door to the street.
On a different note, I can totally relate to that spider thing! I don't have any problems with spiders and I live in Europe, so they're pretty small and harmless here. However, I've got an absolutely horrible phobia of snails, slugs and especially worms. I've got no idea where this comes from but since I was a little child, I've had this phobia. I know that other people don't like these animals either and find them nasty or at least unpleasant but for me it's far worse than that. I get serious panic attacks when I come too close to one of these things. I remember one time in elementary school during recess, some boy put a slug on the palm of his hand (ewwww...) and attempted to stick it down my t-shirt. Fortunately, my eyesight was better back then, so I saw him coming. I stumbled back a few steps and told him to stop immediately and go away. Instead, he tried to run towards me or throw the slug at me. I ran away across the schoolyard and the other boy ran after me. I soon realized that I had no chance of outrunning him; I was legally blind, he was fully sighted. So, in my panic I picked up a rock and threw it at him. The rock hit him right on the forehead and he began to cry like a baby. I felt a little bad but only a little. 10 minutes later I was scolded by a teacher and told I'd have to stay after school if anything like that ever happened again but I didn't even bother to listen. I was just extremely glad that I had managed to avoid having a slug in my hair or down my t-shirt or underwear. I would've preferred any punishment a teacher could think of over that slug.
Now that I'm an adult, I still hate those animals. One time I was cutting a tomato when my wife shrieked and told me to stop. She first didn't want to tell me what's going on but when I pushed her, she said there was a huge worm on the cutting board. Not a catterpillar, I can deal with those. A worm. Since that day, I always feel super uncomfortable whenever I chop veggies, especially if my wife isn't anywhere nearby. I think being blind (or visually impaired) makes these phobias so much worse. If you can't even see the thing you're scared of, you get kinda paranoid after a while. At least for me it feels like they could be anywhere all the time. Every time I step outside after it has rained a lot, I wonder what's creeping across the little garden path that leads from our door to the street.
letspaintthesky 1 points 1y ago
Oh, no! Animal related phobias are terrible!
You SO do get paranoid. Like, I miss spiders in broad daylight that would probably kill me, I'm not taking my chances in shadows or dark :L I'm probably too cautious, but like, better someone with a chance of seeing the thing take the risk than me (Hashtag sorry not sorry)
You SO do get paranoid. Like, I miss spiders in broad daylight that would probably kill me, I'm not taking my chances in shadows or dark :L I'm probably too cautious, but like, better someone with a chance of seeing the thing take the risk than me (Hashtag sorry not sorry)
Iamheno 9 points 1y ago
Sorry I’m not trying to be a jerk.
Maybe I’m in the minority here but, YTA. Seems like when you were younger you prided yourself on fitting in to the point people forgot you have a disability, and then when the disability became a liability to you you became upset at them for forgetting? Every time something doesn’t go your way with your family you lash out and say “Fine I quit.” Or “Well then I’m not coming.”
“My sister wrote: "So we can't show pictures to each other anymore just because you're blind?! Seems pretty damn selfish to me."” You threaten to quit instead of saying “No, I just want/need a description of the picture so I can participate also.”
The fondue does sound dangerous, but instead of finding an alternative for yourself you’re asking everyone else to change. Why can’t you sit at the table and participate in another meaningful way? Slice the meats, or veggies for others? Is it so offensive to you if your wife does cook the meat for you if your concerned about the oil? Sounds like you didn’t like the oil before so is it even about sight?
Maybe they are frustrated because you aren’t communicating what you need in an effective way? It does sound like they are trying to include you, but you’re not willing to let them know what you need and why you need it. Try sitting down and being civil, there are phases of adjustment to blindness which we as people experiencing it need to go through, and our families and friends need to go through them also, it doesn’t mean we’ll all be at the same place at the same time.
Maybe I’m in the minority here but, YTA. Seems like when you were younger you prided yourself on fitting in to the point people forgot you have a disability, and then when the disability became a liability to you you became upset at them for forgetting? Every time something doesn’t go your way with your family you lash out and say “Fine I quit.” Or “Well then I’m not coming.”
“My sister wrote: "So we can't show pictures to each other anymore just because you're blind?! Seems pretty damn selfish to me."” You threaten to quit instead of saying “No, I just want/need a description of the picture so I can participate also.”
The fondue does sound dangerous, but instead of finding an alternative for yourself you’re asking everyone else to change. Why can’t you sit at the table and participate in another meaningful way? Slice the meats, or veggies for others? Is it so offensive to you if your wife does cook the meat for you if your concerned about the oil? Sounds like you didn’t like the oil before so is it even about sight?
Maybe they are frustrated because you aren’t communicating what you need in an effective way? It does sound like they are trying to include you, but you’re not willing to let them know what you need and why you need it. Try sitting down and being civil, there are phases of adjustment to blindness which we as people experiencing it need to go through, and our families and friends need to go through them also, it doesn’t mean we’ll all be at the same place at the same time.
letspaintthesky 2 points 1y ago
>Seems like when you were younger you prided yourself on fitting in to the point people forgot you have a disability, and then when the disability became a liability to you you became upset at them for forgetting?
As disabled people, we're raised to 'act normal' and 'fit in' and then when we need access accommodations, this is the same attitude people have when they use our masking as an excuse to deny us basic accessibility.
As disabled people, we're raised to 'act normal' and 'fit in' and then when we need access accommodations, this is the same attitude people have when they use our masking as an excuse to deny us basic accessibility.
Iamheno 2 points 1y ago
As a disabled athlete who spends a majority of his time with able bodied athletes and many of them forget I’m disabled I don’t get salty with them. I take time and assess the situation before I get into danger, and remind them I may need assistance, or if I inadvertently screw up and get into a situation, I don’t get mad at them I get mad at myself. It’s called personal responsibility. If I need an accommodation it’s my responsibility to let others know so in a reasonable manner. It’s not my responsibility how they respond, only how I react to their response.
Arcane_Panacea [OP] 2 points 1y ago
Well, I guess you're right with that first part but I feel like you're also expecting too much of younger me. I mean, I was a child or a teenager when I tried to it in. I live in a country that isn't very progressive when it comes to disability matters; back then even less so than today. And I grew up without knowing any other blind or VI individuals. So I'd say it was also just a normal reaction for me to try and integrate myself into the only world I knew (the world of sighted people). And when my disability became a major problem... yes, of course I wanted people to be considerate but isn't that normal?
Regarding the fondue, my frustration doesn't come from the fact that I can't cook my meat myself. It's more like, wherever you sit at that table, it's kind of dangerous. But it's considerably more dangerous to me than it is to everyone else. My family is not willing to change the menu and my mom's suggestion was to seat me at a separate table several feet away from everyone else, where I would be eating by myself like a servant in the old days. That's an idea I'm not okay with.
I try to talk to my family but I must admit it's very frustrating. It's frustrating that I have to explain everything to them, that they don't just get me. I wish they'd just think along and get what I need. After all, my wife is able to do this and she's known me for much shorter time than my parents and siblings have known me for. If it was a work colleague or someone like that, I wouldn't mind at all. I wouldn't expect them to know what I need. But with my family I feel like I should be able to expect this. Like, if I met a person in a wheelchair and I invited them to my apartment, I would immediately realize there's a problem because there's no elevator. So I would try to figure out a solution. The person wouldn't have to remind me: "by the way, please make sure I can reach your door." But with my family, I often feel like I have to give these types of reminders.
Regarding the fondue, my frustration doesn't come from the fact that I can't cook my meat myself. It's more like, wherever you sit at that table, it's kind of dangerous. But it's considerably more dangerous to me than it is to everyone else. My family is not willing to change the menu and my mom's suggestion was to seat me at a separate table several feet away from everyone else, where I would be eating by myself like a servant in the old days. That's an idea I'm not okay with.
I try to talk to my family but I must admit it's very frustrating. It's frustrating that I have to explain everything to them, that they don't just get me. I wish they'd just think along and get what I need. After all, my wife is able to do this and she's known me for much shorter time than my parents and siblings have known me for. If it was a work colleague or someone like that, I wouldn't mind at all. I wouldn't expect them to know what I need. But with my family I feel like I should be able to expect this. Like, if I met a person in a wheelchair and I invited them to my apartment, I would immediately realize there's a problem because there's no elevator. So I would try to figure out a solution. The person wouldn't have to remind me: "by the way, please make sure I can reach your door." But with my family, I often feel like I have to give these types of reminders.
DrillInstructorJan 1 points 1y ago
The part about everyone going through this stuff is very true but it is also incredibly hard to deal with when you're going through it at the same time. You're totally right and it is very hard and I don't really know what to say. I would say that usually it is not nearly as easy as just writing people off as "ableist", nobody is really ableist in the way people usually seem to imply, people are scared or confused or awkward and sadly it becomes our problem to solve, it's not anyone's fault really. I know it's hard to grok that sometimes.
ChellVaquita 7 points 1y ago
I’m sorry about all this worry and stress this situation is putting on you. I can relate, I ‘faked’ or more so just ignored that I was blind - I have congenital nystagmus which makes my eyes involuntarily move. People are very ignorant to blind people. Because all they know are the stereotypes in movies.
Arcane_Panacea [OP] 2 points 1y ago
Thank you for your reply. Oh and I've got that too. The congenital nystagmus I mean. These days it's much better but when I was a child (25 years ago), even some of the eye doctors were ignorant. I remember eye doctors who'd tell me in a grumpy tone: "keep your eye steady already, I'm trying to examine you."
letspaintthesky 1 points 1y ago
My nystagmus is really mild and very on off (usually off) but I can't really control the muscle in my left eye for more than 5 seconds at a time (legit 5 seconds, I've timed it) and holy crap, eye-imaging machine techs really love to yell at you to keep your eye straight
I FUCKING CAN'T!!
I FUCKING CAN'T!!
niamhweking 5 points 1y ago
I think it's really hard for people to find a middle ground or realise there is a spectrum. They see you as an independent adult and possibly forget you have a disability. And they cannot fathom with all the wonderful advances in tech that somethings don't get converted to an understandable format.
My in laws took 9 years to even ask once about my child's condition and then when they finally did they claimed it was the same as anyone who needed glasses. It was quite frustrating to say the least. I'm not even bothering anymore. My family accommodate my child, have put stickers on glass doors, are interested in her appointments and training, buy her peaked caps, light up toys etc.
Is there even one other person in the family that seems nicer than the others? Could u ask them to describe the photos in the group chat?
Or you know if they cause you that much hassle, instead of giving ultimatums just step back, turn off notifications for that group chat, just don't come over for Christmas. Hanging out with people who upset you that much isn't worth your energy
My in laws took 9 years to even ask once about my child's condition and then when they finally did they claimed it was the same as anyone who needed glasses. It was quite frustrating to say the least. I'm not even bothering anymore. My family accommodate my child, have put stickers on glass doors, are interested in her appointments and training, buy her peaked caps, light up toys etc.
Is there even one other person in the family that seems nicer than the others? Could u ask them to describe the photos in the group chat?
Or you know if they cause you that much hassle, instead of giving ultimatums just step back, turn off notifications for that group chat, just don't come over for Christmas. Hanging out with people who upset you that much isn't worth your energy
Arcane_Panacea [OP] 3 points 1y ago
Thank you for your reply. I usually ask my wife for this sort of assistance but it has become frustrating for her, too. My wife likes my parents a lot, they've been very kind to her. However, they seem to expect her to "take care" of me in every way. If there's a disability-related problem, they just leave it to my wife to deal with. Of course she wants me to be happy, so she always makes sure to assist and help but it's also quite exhausting for her sometimes.
Yeah, I've turned off the notifications for that group chat now but I know I must attend Christmas dinner. I don't really have a choice. If I don't go, my family and especially my mom and sister will never forgive me. The whole thing is really tricky because we all live in the same city. I often wish there was more distance between us; I think it would make the whole thing easier. For example my wife doesn't have a good relationship with her dad but it's okay because her parents live roughly 6,500 miles away, on the other side of the planet (where my wife comes from). She can just write some polite text messages to her dad and if it gets too annoying, she stops talking to him for a while. For me, that's not really possible. I have to deal with my family quite regularly. My wife and I don't want to move away because we like it here for various reasons. So, since we're probably going to stay here for the foreseeable future, I want to keep a halfway normal relationship with my family. But with their lack of understanding, it's very difficult. I think it's so tough when it's your family. If it were some idiot work colleague, I could just gossip about him to my wife and mind my own business while at work. But when it's your family, it's so much more complicated...
Yeah, I've turned off the notifications for that group chat now but I know I must attend Christmas dinner. I don't really have a choice. If I don't go, my family and especially my mom and sister will never forgive me. The whole thing is really tricky because we all live in the same city. I often wish there was more distance between us; I think it would make the whole thing easier. For example my wife doesn't have a good relationship with her dad but it's okay because her parents live roughly 6,500 miles away, on the other side of the planet (where my wife comes from). She can just write some polite text messages to her dad and if it gets too annoying, she stops talking to him for a while. For me, that's not really possible. I have to deal with my family quite regularly. My wife and I don't want to move away because we like it here for various reasons. So, since we're probably going to stay here for the foreseeable future, I want to keep a halfway normal relationship with my family. But with their lack of understanding, it's very difficult. I think it's so tough when it's your family. If it were some idiot work colleague, I could just gossip about him to my wife and mind my own business while at work. But when it's your family, it's so much more complicated...
Mamamagpie 5 points 1y ago
My first thought on the group chat… there has to be a way to post Braille to make a point…
Arcane_Panacea [OP] 2 points 1y ago
Funny idea but I don't know any braille
DrillInstructorJan 3 points 1y ago
This is not as simple as some people have made out. Several other people on this thread have said some pretty uncomplimentary things about your family, and others have said you have some responsibility here too. I think all of that is true to some extent but the practical reality is that no matter who's right and who's wrong it is inevitably up to you to figure out how to fix this. That is a sad reality but it is true.
It might help to know that you are not the only person who has hit this issue where people try to sort of ignore the situation you're in. It's easier for them that way. Yes, you can say it's your problem to deal with, but the people around you are watching you go through it. It's especially easy for people to try to ignore it when your sight has decreased gradually but it even happened to me, and I went from normal sight to nothing in a day. If it seems like they're ignoring things which are completely obvious then maybe this is part of why. They know, they just can't deal with it, and yes that sounds completely mad as you're the one dealing with it, but this does happen.
The other reason they may say crazy things is that they really don't know, and since this is clearly getting under your skin it might be time to have a calm and collected chat with people. I have talked to people before who have done that and it's helped. There's no quick and easy fix but trying to keep it simple and unemotional and telling them what's really going on can help. Make some notes even. Be clear, don't gripe, just tell them.
Like I say I don't want to put this all on you but the facts are that nobody else is likely to have a solution.
It might help to know that you are not the only person who has hit this issue where people try to sort of ignore the situation you're in. It's easier for them that way. Yes, you can say it's your problem to deal with, but the people around you are watching you go through it. It's especially easy for people to try to ignore it when your sight has decreased gradually but it even happened to me, and I went from normal sight to nothing in a day. If it seems like they're ignoring things which are completely obvious then maybe this is part of why. They know, they just can't deal with it, and yes that sounds completely mad as you're the one dealing with it, but this does happen.
The other reason they may say crazy things is that they really don't know, and since this is clearly getting under your skin it might be time to have a calm and collected chat with people. I have talked to people before who have done that and it's helped. There's no quick and easy fix but trying to keep it simple and unemotional and telling them what's really going on can help. Make some notes even. Be clear, don't gripe, just tell them.
Like I say I don't want to put this all on you but the facts are that nobody else is likely to have a solution.
Arcane_Panacea [OP] 1 points 1y ago
Thank you for your thoughtful answer. I don't think my family is evil or anything like that, but I needed to hear that someone understands my situation. And I think you do.
codeplaysleep 1 points 1y ago
I know this post is a bit old, but I've been on vacation and I'm just now seeing it.
I'm sorry your family is being this way. My dad doesn't really accept that my vision is worse now than it was when I was younger. Even though I've been legally blind since birth and he was always very supportive then, he refuses to accept that my eyesight is worse now. I have to constantly remind him that I can't see things, constantly ask him to turn on lights when I go visit, and he doesn't think I need my cane and that it "makes no sense" why I would want to use it. It's frustrating, for sure.
For what it's worth, I've always worn safety glasses whenever I deep fry something. It may look silly, but I don't care. I'm going to protect my eye from random hot oil popping and splattering.
I'm sorry your family is being this way. My dad doesn't really accept that my vision is worse now than it was when I was younger. Even though I've been legally blind since birth and he was always very supportive then, he refuses to accept that my eyesight is worse now. I have to constantly remind him that I can't see things, constantly ask him to turn on lights when I go visit, and he doesn't think I need my cane and that it "makes no sense" why I would want to use it. It's frustrating, for sure.
For what it's worth, I've always worn safety glasses whenever I deep fry something. It may look silly, but I don't care. I'm going to protect my eye from random hot oil popping and splattering.
SoapyRiley 1 points 1y ago
With the fondue, wear glove and long sleeves so the oil doesn’t burn you and fling the meat into it so others get splashed and burned. They’ll never serve it with you there again! They don’t need to sit you at a separate table like a child. With the chat thing, pop in and ask what is that? Have your wife do it too. People eventually get tired of you asking and preemptively provide text descriptions. Or if they don’t, just bow out and when they ask, tell them they were sending pictures and you lost interest because they weren’t willing to share what was in them. Just be matter of fact about it, not emotional or accusing. If they are going to leave you out, there’s no reason for you to be in the chat. Keep in mind, if you feel your family is toxic, you do not have to spend time with them. Just because you “usually” do this or that for the holidays, doesn’t mean you always have to do it. Mix it up. Take a vacation. Have a nice dinner at home. Eat Chinese food on the couch. Be kind to yourself and if you’re tired of “educating” take a break! Some people aren’t receptive anyway and you just end up nagging. Nobody like a nag.
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