The thing about looking different is that people tell you what they really think. Not all of what they say is malicious - it's a case of unthinking behaviour, personal discomfort/projection about someone else looking different or no filter between brain and mouth.
These are three conversations I've had recently.
Lady at bus stop, pulling disgusted face: "Ughhh have you been burnt."
Me: "No. I haven't been, I was born like this. There's no need to pull that face at me."
Lady: "I'm sorry. But you're very attractive though. Very attractive even though you look like you've been burnt."
A couple of months later:
Man on tram, laughing: "you've been covered in blood!"
Me: "No, born like this. Not a Halloween costume."
Man: "sorry, I bet everyone thinks it is."
(I do believe this idea might stem from scary face at Halloween.)
And then, in the same week:
Lady in African restaurant, waving her arms around her face: "what's the significance of this, your face?"
Me: "what do you mean?"
Her: "is it traditional African?"
Me: "it's traditional genetics."
Her: "I've seen pictures of people in Africa who wear makeup like that."
Me, laughing: "I'm sure you have. That's one of the strangest questions I've been asked. And it's rude to just come up and ask a stranger about their appearance."
Her: "Sorry. I don't think it's rude. I was kind of hoping it was traditional makeup. I love it."
Adam: head in hands, bewildered.
(I have South African heritage. Never worn traditional dress.
I was dumbfounded. Like I'd black up to go to an African restaurant (even though I'm part South African, I don't appear that way, nor accentuate racial features). So strange.)
I'm not even making this shit up! These microaaggressions happen to me a lot. I acknowledge they're not discriminatory or upsetting (for me). Others might take these encounters to heart. But they're tiring. And fortunately, laughable (and blog fodder).
I just don't understand how people think it's polite behavior to say stuff like this. And then the conversation gets really awkward because they've interrupted me to discuss my face and how they feel about it. And if I call them out on their rude behaviour, they might perceive all people who look different or with a disability as unapproachable. So ultimately I (perceivably) end up being the rude person because of assertion.
Outsiders (and even insiders - those with my condition) see these encounters as an opportunity educate the ignorant. And while I agree with educating, I maintain that we don't have to be *on* all the time. But then it's assumed that because a number of people welcome that, we ALL do. That we are all ok with questions and comments and education 24/7 if it helps the greater good.
I also believe that people who make such comments - particularly about an appearance being akin to a Halloween costume or feeling sad for someone for looking "unfortunate" might be projecting their own insecurities of what it might be like to look different.
I'm not sure of the response that people expect me to give to make them feel comfortable. It seems that being honest about born like this isn't enough to evoke empathy. It seems that me calling out their rudeness isn't enough for them to realise they are, in fact, being rude.
Are boundaries blurred because of curiosity - and when people are curious, they're not rude, right? Does social media make people feel they have the right to offer an opinion on everything, even in person? Or is it just a case of not engaging the brain before the mouth?
I've discussed the issues of intrusive behaviour and unsolicited comments and questions so much on this blog - and I still have no answers (and still get people telling me I should expect this, and that it's my job to educate all the time). Sometimes I find myself in the most bizarre conversations - defending my appearance and setting someone straight about whats polite behaviour. All I can do is laugh.
I agree wholeheartedly Carly!
ReplyDeleteThanks!
DeleteI've never understood why some people seem to think that their curiosity somehow makes their questions any less rude or intrusive.
ReplyDeleteOh but they're JUST curious. And well meaning. Of course they're not being rude. /sarcasm font
Delete100% real talk.
ReplyDeleteI love this. Yes - why do we have to be "on" all the time? Most of the time I will answer questions, but sometimes you just don't want or have time to be the disability educator!
ReplyDeleteThanks Denise I have another post scheduled with a similar theme next week - the belief that we are always supposed to be educating is as tiring as these comments.
DeleteI wrote about that once - about how being disabled shouldn't come along with expectation that you want to be an educator or an advocate. I used to work with teens with intellectual disabilities, and for most of them they just wanted to be like the teens that they saw in the "regular" classes. They might have been interested in having some more say in what went on in their lives, but beyond that? They didn't want to be talking about disability all the time.
ReplyDeleteExactly - everyone needs a break
DeleteI actually had a non-disabled stranger tell me that they thought that disabled people should make ourselves available for the severely abled to 'help' us whenever they want because it makes the able-bodied better people. Ahem.
ReplyDeleteOh yeah I've definitely had that happen too! So frustrating! My post next week, as I mentioned to Denise, was inspired by this.
DeleteAfter mentioning a time I encountered rudeness on the train, a Facebook follower said this:
"I have worked for a number of years as a Counsellor and training support person for people living with a disability. I also live with CRPS/RSD myself, an 'invisible' disability which in itself means that whilst coping with pain that's at times off the scale, and with varying degrees of immobility on any given day, you look seemingly 'normal'. So, people don't 'get' where you're at and what you're dealing with .. In honesty, I have no problem with that, they don't know the full story, it's not their fault, and like everyone else with a disability, I don't want sympathy. People react differently to disability .. Some know how to respond appropriately, some don't. We are dealing with ignorance here, not rudeness. This ignorance (like any other) is based on a lack of education on the subject, and you can't blame someone for reacting in a certain way when they don't know any better.
So (as I have always taught the people I work with), it is OUR responsibility to teach people, to one by one do OUR part to help overcome this ignorance. It's not up to 'others', to do this .. WE know how it feels, WE are in a better position than anyone else to lead this education process in our communities. And we need to approach it in a sensitive and constructive way. Who wants to be told that they're 'rude' when they thought (albeit a little 'ignorantly') that they were just trying to help ? .. Will that person ever show that consideration again should it occur ? .. I would very much have my doubts .. This is not a personal attack Carly, not in any way .. Just sharing my thoughts based on experience .. Had you been someone else who had (for whatever reason) suddenly found themselves over-heating and unwell, such an offer may have been not only welcome, but a Godsend .. Telling some well-meaning soul that they're rude for reaching out to you in their own way doesn't help the cause, in my mind it only helps to perpetuate the common misconception within the general community that 'disabled' people have a victim mentality. We want to be accepted for who we are, and not favoured, or patronized, or even shunned because of our disability .. It's not always easy or even convenient to take the time to thank someone for their concern, and then briefly help them to understand .. If we truly want our world to change, then we, the Ambassadors for Disabilty Awareness need to TAKE that time, and MAKE that effort .. In this case, it's NOT all about US .. It's all about THEM and we should count it as a privilege (and indeed our responsibility) to be able to help them understand in a caring and unselfish way. I trust this offering will be taken as a positive point of view for consideration .. We don't have to agree on everything, it's healthy to look at it from all angles .. Be safe, AJ 😎"
That was from here https://m.facebook.com/Tune.into.Radio.Carly/posts/939473992761615
DeleteLove this quote: "And while I agree with educating, I maintain that we don't have to be *on* all the time."
ReplyDeleteI mostly deal with jokes about my medicine.
I am required to take corticosteroids to live, just like a diabetic requires insulin. I do not take performance enhancing drugs. I do not take anabolic steroids. My drugs are not the type you would want to abuse.
Unfortunately, people just focus in the word "steroids."
"Give me some of your 'roids! I want to run faster!"
"Duuude.... You're on steroids?! Ha-ha! So THAT'S how you did that!"
"Woah now. 'Roid rage!"
No. Just no. On so many levels, no.
The assumptions people make about medications is terrible. I'm sorry you endure those comments about steroids - it shows the media portrayal of them , combined with ignorance of medical issues.
DeleteThat quote rang so true for me, too. My son has Down's syndrome and I take great issue with people (particularly medicine) throwing him in a box with a big fat label. Sure, education is necessary but if someone crosses a line, it is my right - and when he gets older and is able, his own right - to tell them they are being inappropriate. If they get defensive it's their problem. I'm tired of being tagged the aggressor just because I defend my son's right to individuality. Love the hashtag #NoFilter as well. Love love love.
ReplyDeleteOh Maxine! That's my issue too - stereotyping. Thank you for enjoying this post :)
Delete"You don't LOOK autistic, are you sure?"
ReplyDeleteMeltdowns, shutdowns, fixed interests, anxiety, social confusion, sensory processing disorder, auditory processing disorder etc etc etc all say yes. So do multiple psychologists. Pretty sure.
Oh the assumptions people make! I'm sorry :(
DeleteI know that too....
ReplyDeleteHow do you dare to go outside looking like that?
Did you spend too much time in the sun?
I know somebody with the same skin as you. He drank milk of a horse and is cured now..
Are you exploded?
The dermatologist in the local hospital told me to go earn money in the nearby museum..because I asked him if I could have netherton syndrome. I could work there as a statue...showing myself to the public. This man made me very sad.... A few years later Alain Hovnanian in France discovered I had a rare variety of netherton. I was 39 by then.
Oh Karin this is awful. I'm so sorry. What an awful uneducated experience.
DeleteNeed to make ppl a big cup of stfu.
ReplyDeleteSome people are just so incredibly RUDE and stupid! I wish they would keep their opinions to themselves and realise that everyone has the right to look as they do without being criticised or commented about. I have always been a bit on the skinny side which you'd think would be considered a 'good' thing but you wouldn't believe how many people make comments to me - strangers saying "you're very skinny aren't you" or "you should eat more" and looking concerned. Ugh get over it people its just my genetics we don't all look the same. I don't even want to think about the comments i'd get if they saw all the acne and rosacea i have on my face which i painstakenly cover with make up. Wish i had the guts to stand up for myself like you do Carly :)
ReplyDeleteI get accused, all the same time, that I make this kind of stuff up. No need to difference seems to some to be permission to be intrusive.
ReplyDelete