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Your experience of non disabled people asking about your condition

NinaBDarcyNinaBDarcy Posts: 8Member Connected
edited June 4 in Disabled people

Hi, I’m new here and I’d like to ask for your experience regarding the questions non disabled people ask you or your child but I’ll share my experience first 😊


So I was born with Spina Bifida and one of my Sons also has Spina Bifida. We both wear an AFO and I use crutches or a wheelchair when out and about. 


I get asked weekly sometimes daily ‘What have you done?” Or ‘What happened to you?’ and I find it so jarring and intrusive. 


I bought this up on my instagram account and got lots of other disabled people saying it irked them too but no non disabled people commented. I did however receive DMs and had conversations where I was told things like “People are curious you’ll never stop them asking” “It comes from a good place to show they care” 


This was frustrating because I didn’t need to be told that. I understand that the people asking aren’t doing it to be spiteful but it’s still an unwelcome experience and I just wanted that to be heard and taken on board.


For me when I get asked the question I briefly explain my condition then they look awkward and then tell me they’re sorry then I have to be all “You don’t need to be sorry I’ve got a lovely life ta” 🙄


I’ve been asked both when I’m using my crutches and when I’m in my wheelchair. So I’m wondering how common (if at all) this experience is for you? 


I explained to one friend who would ask someone who came into her workplace “What have you done?” that instead of asking what they’d done (which only serves to satisfy your own curiosity and doesn’t benefit the person being asked at all) that maybe they could ask something more useful. No one needs to know someone’s condition or the story of how they got there, it doesn’t benefit either of you but asking an employee or customer or friend if there’s anything you can do to make the space more accessible for them would be massively beneficial and show you care way more than trying to extract their entire medical history! 


Sorry that was a long waffle 😁Your own experiences on this would be massively appreciated. 


Oh and when I asked my five year old son what he could say to people who ask him. His response was “**** off this is my business not yours!” Maybe we should all take a leaf out of his book 😂

Replies

  • April2018momApril2018mom Posts: 486Member Pioneering
    This is a subject near and dear to me personally. Forgive me for rambling on here. Over the years I’ve gotten all kinds of questions about my son’s disability.
    Especially when we are in a restaurant or at a event etc. Recently I took my son and daughter to a local park and someone asked me about his legs. I seize the opportunity to make a difference and educate them about disability. I like to talk about positive things so I don’t focus on my son’s limitations. I explain to whoever is asking the question that we are all different and diversity is a good thing. 
  • MisscleoMisscleo Posts: 534Member Pioneering
    Iv had those question all my life. I find it very rude.
    Last week 1 asked me WHY I.walk so slow and said i was in EVERY ONES way. 
    I pointed out that I am a small person.and anyone who cant get passed me must be too big.
    I could hear laughter from the nice people.
    Down the shops a women bashed into a disabled woman and shouted OW she was swearing at the disabled women so i went over and told her Id seen.that she contrived the whole thing and iv seen that happen many times. And people who pretend a disabled person has caused a car accident. When they hadn't.
    Hate crime needs to have a jail sentance
  • KG100KG100 Posts: 87Member Courageous
    My main medical problem is my heart, but as people can't see it I just tell them I have bad hands.
    I've also got RA and Sjogrens and other bone problems, and I have two large scars going across my hands where my plastic knuckles are.
    People can see these scars clearly so are kept quiet !!

  • KG100KG100 Posts: 87Member Courageous
    I think people like to "see" our disabilities and find it hard to understand hidden ones !!
  • NinaBDarcyNinaBDarcy Posts: 8Member Connected
    Thank you so much for sharing your experiences it’s really helpful 💕
  • NinaBDarcyNinaBDarcy Posts: 8Member Connected
    Also if you’re interested there’s a big discussion going on over at my Instagram https://www.instagram.com/p/ByKTNexF0cc/?igshid=vjg8n71a0mvm
  • mikehughescqmikehughescq Posts: 3,313Member - under moderation Disability Gamechanger

    I explained to one friend who would ask someone who came into her workplace “What have you done?” that instead of asking what they’d done (which only serves to satisfy your own curiosity and doesn’t benefit the person being asked at all) that maybe they could ask something more useful. No one needs to know someone’s condition or the story of how they got there, it doesn’t benefit either of you but asking an employee or customer or friend if there’s anything you can do to make the space more accessible for them would be massively beneficial and show you care way more than trying to extract their entire medical history! 

    This cuts to the chase for me. None of this is an easy area but we all need to recognise that this is not easy for anybody whether that’s a person with an invisible impairment or a person asking a question. There is no one size fits all. Sure, I sometimes get asked questions which I personally find insulting or ignorant or ill-informed or which maybe have a questionable intent behind them but we have choices. There is no rule which says a question has to “benefit the person being asked”. I find that a bizarre idea. If you’re in school do you ask a question to benefit the teacher? 

    I always welcome questions. It makes my conditions less invisible; enables me to challenge assumptions and maybe actually make friends with people who would otherwise be wary. It’s very easy to make this an us and them thing. In some circumstances that can be useful but just as often we’re cutting off our noses to spite our face. So yes, if that involved giving some of my medical history then bring it on. Not everyone will welcome that and sometimes I will be fatigued by the repetition but by and large bring it on. 

    Ultimately people ask questions for many reasons but by and large it starts with the fact that they don’t know. They will never know unless we talk. The more we talk the it’s there is to ask. Even if the questions keep coming they will at least be better informed. 
  • Hart86Hart86 Posts: 99Member Courageous
    edited June 4
    I’ve found this a really interesting read and it has highlighted my own ignorance. I admit I’m guilty of asking people “what have you done?” or “what happened?”. 😟 I think in part it’s because unless a disability is visible I’ve (wrongly!!) seen crutches and assumed injury rather than disability - which as someone suffering invisible disabilities I realise is ridiculous. I know it’s not the same but I was on crutches last year following an injury and lost count of how many times I was asked these questions, I think people used it almost as an icebreaker! 😞

    Completely different but when my daughter was young she had surgery and was in a body cast, the amount of questions and attention we received was horrible. Although nothing beats the lady that approached and told me there were shelters that could help and I didn’t need to stay with someone violent!!!! 🙄 My poor fiancée didn’t know what to say and we both just stood silent in shock. I know it came from a good place but it was very ignorant and really rude! 

    Thanks @NinaBDarcy for this question, I think it’s really important and has definitely made me realise my own ignorance too. Xx
  • NinaBDarcyNinaBDarcy Posts: 8Member Connected

    I explained to one friend who would ask someone who came into her workplace “What have you done?” that instead of asking what they’d done (which only serves to satisfy your own curiosity and doesn’t benefit the person being asked at all) that maybe they could ask something more useful. No one needs to know someone’s condition or the story of how they got there, it doesn’t benefit either of you but asking an employee or customer or friend if there’s anything you can do to make the space more accessible for them would be massively beneficial and show you care way more than trying to extract their entire medical history! 

    This cuts to the chase for me. None of this is an easy area but we all need to recognise that this is not easy for anybody whether that’s a person with an invisible impairment or a person asking a question. There is no one size fits all. Sure, I sometimes get asked questions which I personally find insulting or ignorant or ill-informed or which maybe have a questionable intent behind them but we have choices. There is no rule which says a question has to “benefit the person being asked”. I find that a bizarre idea. If you’re in school do you ask a question to benefit the teacher? 

    I always welcome questions. It makes my conditions less invisible; enables me to challenge assumptions and maybe actually make friends with people who would otherwise be wary. It’s very easy to make this an us and them thing. In some circumstances that can be useful but just as often we’re cutting off our noses to spite our face. So yes, if that involved giving some of my medical history then bring it on. Not everyone will welcome that and sometimes I will be fatigued by the repetition but by and large bring it on. 

    Ultimately people ask questions for many reasons but by and large it starts with the fact that they don’t know. They will never know unless we talk. The more we talk the it’s there is to ask. Even if the questions keep coming they will at least be better informed. 
    I’d hope if I was in school I wouldn’t ask my teacher something personal about their health, also a teacher student scenario questions are obviously meant to be asked...I do see the point you’re making though. I think it’s more that when we form friendships we each share personal information about ourselves and that’s how we grow closer. Unfortunately though often when I’m approached by a stranger and they ask what I’ve done and I then reveal what I would class as quite personal information they then say oh sorry and go about their day. 

    I know this isn’t the case all the time, sometimes maybe that will lead to them sharing something about themselves but that’s never happened to me yet! 

    I talk a lot lot about my SB on social media and am more than happy to share and educate its more the strangers that ask that I find awkward. 

    I posted here to see if anyone felt similar knowing this is my experience and not everyone would share it. 

    Thank you for sharing your view point 
  • NinaBDarcyNinaBDarcy Posts: 8Member Connected
    Hart86 said:
    I’ve found this a really interesting read and it has highlighted my own ignorance. I admit I’m guilty of asking people “what have you done?” or “what happened?”. 😟 I think in part it’s because unless a disability is visible I’ve (wrongly!!) seen crutches and assumed injury rather than disability - which as someone suffering invisible disabilities I realise is ridiculous. I know it’s not the same but I was on crutches last year following an injury and lost count of how many times I was asked these questions, I think people used it almost as an icebreaker! 😞

    Completely different but when my daughter was young she had surgery and was in a body cast, the amount of questions and attention we received was horrible. Although nothing beats the lady that approached and told me there were shelters that could help and I didn’t need to stay with someone violent!!!! 🙄 My poor fiancée didn’t know what to say and we both just stood silent in shock. I know it came from a good place but it was very ignorant and really rude! 

    Thanks @NinaBDarcy for this question, I think it’s really important and has definitely made me realise my own ignorance too. Xx
    Thank you so much for sharing xx
  • Hart86Hart86 Posts: 99Member Courageous
    I hope you didn’t mind me commenting from the ignorant side @NinaBDarcy!!
  • NinaBDarcyNinaBDarcy Posts: 8Member Connected
    Hart86 said:
    I hope you didn’t mind me commenting from the ignorant side @NinaBDarcy!!
    Goodness you’re not! I’m just grateful for people sharing any experience they have so really thank you xx
  • GarzaGarza Posts: 32Member Connected
    I am a wheelchair user and I have been asked these questions for as long as I can remember, as a previous poster said I take each instance on merit, if I fell the person has a genuine question or if it is a child for instance, I will give them a brief "dummies" guide and also stress that there are many people worse off and that I have a full, active life.

    I prefer people to go away with an actual answer rather than assumptions, this is especially relevent with children I feel because I hope that education them early will lead to more understanding and tolerence.
  • NinaBDarcyNinaBDarcy Posts: 8Member Connected
    Garza said:
    I am a wheelchair user and I have been asked these questions for as long as I can remember, as a previous poster said I take each instance on merit, if I fell the person has a genuine question or if it is a child for instance, I will give them a brief "dummies" guide and also stress that there are many people worse off and that I have a full, active life.

    I prefer people to go away with an actual answer rather than assumptions, this is especially relevent with children I feel because I hope that education them early will lead to more understanding and tolerence.
    I’ve been mulling this over, if we don’t answer them then how will we educate them? We don’t ask people from the LGBQT community what their sexual preferences are though do we? We might ask someone their pronouns though as that benefits them and supports them. 

    Why does knowing details of our condition help erase ableism? Surely it would be of more benefit to ask us what our needs are? 
  • WaylayWaylay Posts: 804Member Pioneering
    Depends on situation for me. I have chronic pain, muscle spasms and MH problems, so my disabilities are often invisible, sometimes just look like I'm a bit weird, and sometimes (spasms, PTSD, panic) are obviously very problematic.

    If the person is asking because they're worried about me or wondering what's going on, it's all good. e.g. The last time I went to the shop (rare, as it's too far for me most days), I had serious back spasm in an aisle. Ended up on floor, couldn't get up, back curved in weird way, going through purse for pills. A staff member passed by and stopped, started to walk again, then came back and said, "Er, is everything OK?". I explained bad back, muscle spasm, would appreciate help to move to a more out-of-the-way place. He asked another SM (same sex as me) to help me move (which I was very impressed by) and got me a chair to sit on. Once tramadol and diazepam had kicked in, I called taxi and asked if one of them could help me outside, unobtrusively. Female SM did, while original SM very kindly rang up my items (I was going to leave them) and packed them up. It was horribly humiliating (a lot of my anxiety revolves around being vulnerable and embarrassed/humiliated in public) my anxiety went through the roof (a lot of my anxiety revolves around being vulnerable and embarrassed/humiliated in public), and my CPTSD hyperarousal went nuts (I didn't sleep for the next 2 days). It could have been so much worse, though. The staff were polite, helpful and acted as if this kind of thing happens every day. I'm glad he asked.

    I'm socially awkward and anxious, and my friends (if they still remember who I am after the past couple of years) are geeky, nerdy, and a high % have ASD. I used to find that newish people in our group would ask just to have something to say, w/out really thinking about how personal it was. "What's that pill for?", "Why do you keep getting up and stretching?", etc., are OK by me, and I give a short explanation. A couple of times the questioner has gone on to ask more personal things, at which point I've said that I don't like to talk about it w/ people I don't know. It's not a big deal.

    What I hate hate hate are people who clearly think I'm putting it on, or something. Why they care if the skinny girl on the bus is or is not disabled enough to sit in the disabled seats, I don't know, but I can't use public transport anymore after being screamed at for it 3 times. :/ I've also had someone ask me what's wrong with me when a friend was pushing me around a museum in a wheelchair (walking and standing are BAD). We stopped for a snack and I stood, did some stretches, and moved to a chair. This guy 2 tables down looked shocked, then angry, and came over to ask what was wrong with me that I felt I could "use up" a wheelchair when I could walk. I started to have an anxiety attack, but my friend stood up and said something like, "What makes you think it's appropriate to inject yourself and your obviously ignorant opinions into the limited time she gets to spend outside the house, doing something fun?" (He's awesome.)

    I'm babbling again. Sorry.

  • NinaBDarcyNinaBDarcy Posts: 8Member Connected
    Waylay said:
    Depends on situation for me. I have chronic pain, muscle spasms and MH problems, so my disabilities are often invisible, sometimes just look like I'm a bit weird, and sometimes (spasms, PTSD, panic) are obviously very problematic.

    If the person is asking because they're worried about me or wondering what's going on, it's all good. e.g. The last time I went to the shop (rare, as it's too far for me most days), I had serious back spasm in an aisle. Ended up on floor, couldn't get up, back curved in weird way, going through purse for pills. A staff member passed by and stopped, started to walk again, then came back and said, "Er, is everything OK?". I explained bad back, muscle spasm, would appreciate help to move to a more out-of-the-way place. He asked another SM (same sex as me) to help me move (which I was very impressed by) and got me a chair to sit on. Once tramadol and diazepam had kicked in, I called taxi and asked if one of them could help me outside, unobtrusively. Female SM did, while original SM very kindly rang up my items (I was going to leave them) and packed them up. It was horribly humiliating (a lot of my anxiety revolves around being vulnerable and embarrassed/humiliated in public) my anxiety went through the roof (a lot of my anxiety revolves around being vulnerable and embarrassed/humiliated in public), and my CPTSD hyperarousal went nuts (I didn't sleep for the next 2 days). It could have been so much worse, though. The staff were polite, helpful and acted as if this kind of thing happens every day. I'm glad he asked.

    I'm socially awkward and anxious, and my friends (if they still remember who I am after the past couple of years) are geeky, nerdy, and a high % have ASD. I used to find that newish people in our group would ask just to have something to say, w/out really thinking about how personal it was. "What's that pill for?", "Why do you keep getting up and stretching?", etc., are OK by me, and I give a short explanation. A couple of times the questioner has gone on to ask more personal things, at which point I've said that I don't like to talk about it w/ people I don't know. It's not a big deal.

    What I hate hate hate are people who clearly think I'm putting it on, or something. Why they care if the skinny girl on the bus is or is not disabled enough to sit in the disabled seats, I don't know, but I can't use public transport anymore after being screamed at for it 3 times. :/ I've also had someone ask me what's wrong with me when a friend was pushing me around a museum in a wheelchair (walking and standing are BAD). We stopped for a snack and I stood, did some stretches, and moved to a chair. This guy 2 tables down looked shocked, then angry, and came over to ask what was wrong with me that I felt I could "use up" a wheelchair when I could walk. I started to have an anxiety attack, but my friend stood up and said something like, "What makes you think it's appropriate to inject yourself and your obviously ignorant opinions into the limited time she gets to spend outside the house, doing something fun?" (He's awesome.)

    I'm babbling again. Sorry.

    Not babbling, thank you for sharing. The guy in the museum was an absolute **** hole. It’s amazing how many people think all wheelchair users should be confined to their chair 24/7. I use a mixture of many different mobility aids as do a lot of people. 

    I’m sorry you had to deal with that and glad for lovely supermarket workers.
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