22 January 2014

#abledpeoplesay

(Street art - Hosier Lane, Melbourne)

Yesterday morning on Twitter I came across the #abledpeoplesay meme. There were statements highlighting the ignorance around both physicial disabilities, invisible illness and depression. And I took part straight away, sharing the funny, stupid and insulting things people have said about my skin. Some of these things have been said to me years ago, others more recently. They're the sort of things that just stick, they made me laugh, and I remember them. It wasn't about me being bitter or not letting go. It was about me reflecting on and sharing the reality of how insensitive people can be.

Tweeting these was both humourous and cathartic. And it showed me and the Twittersphere just how intrusive able-bodied people can be towards people with disabilities.

Here are some of the actual things that able-bodied people have said to me. The. Actual. Things.

"You're looking almost 'normal' today."

"I don't even notice your condition anymore."

"I know exactly how it feels to have a severe skin condition; I have my eyebrows waxed monthly."

"Is there a cure for that? I couldn't handle looking like you."

"You want to be treated 'normally' but you still want to maintain your disability identity? I don't understand."

"They don't mean any harm when they ask questions about the way you look. They're just curious."

"Can you still have sex?"

"This is Carly. I've told you about her before. Do you think she's as red as you imagined?"

"Why do you put your photo online if you don't want it ridiculed? You have to expect the ridicule if you look different."

"It's so good that someone like you is out there and not locked away somewhere."

"I've seen Embarrassing Bodies. I know exactly what your condition is like."

"If I was in your situation I'd top myself."

"I will pray for you."

"Don't you wish there was a cure so you'd look a little less...unfortunate?" (Said via an email from an online dating suitor. He didn't get a date.)

"I wasn't sure how comfortable you were with being in a photograph."

"It's easy for you to criticise a diversity conference that lacked diverse speakers. You need to see the bigger picture."

"I don't understand why you only want to discuss your illness on your own terms. Strangers should be able to ask you questions."

"Change your appearance so you can be a little kinder on yourself."

"But dating is just as hard for a 'normal' person too."

"Here's the number of my naturopath."

"You look like that EVERY day?"

"You didn't tell me you were going to be THAT red!" (Said on a date.)

"Quick! Turn on the TV! There's a reality show featuring your condition."

"Is it contagious?"

"Stop scratching. The sound is really annoying me."

"There's always someone worse than you."

"God only gives challenges to those who are strong enough to handle them."

"When I first met you I was a bit shocked but now I realise you're normal and that."

"You've been a silly girl, letting yourself get so sunburnt." (Complete with waggling fingers.)

"What a shame."

"Will your children turn out like you?"

"There's no need to talk about sex around you. You'll never have sex" (Said at high school.)

"But you're not disabled like them."

"He/she must be very strong to be your partner." (This hasn't been said to be but to friends of mine.)

"Retard isn't an offensive word. I'm not talking about disabled people when I say it"

"My kids aren't scared of how you look, they're just shy." (This one makes me sad when I see kids covering their eyes in fear.)

"Oh but people are afraid of difference. They don't know how to react when they see you."

When it's all laid out bare like that I feel pretty proud to be so resilient. But I can't believe that people just say what they're thinking. Would they say those things to people without disabilities? My Twitter friends were disgusted and apologetic about what I tweeted.

I must qualify though: along with these things that have been said to me over the years, there have been so many more wonderful things said. Able-bodied people aren't all like those who have dropped these clangers. And people with disabilities have also said some pretty gobsmacking things to me too.

The things able-bodied people say show the attitudinal barriers that people with disabilities face. There is a gross sense of entitlement for strangers to know what's 'wrong' or to offer a platitude, because they really don't know what to say to someone with a disability. Education like this meme is a start in creating change.

A person tweeted me asking what's a good thing to say? I've written these two pieces that may be useful:

Tips for having a conversation for people with disabilities.

Preparing children for meeting someone with disabilities.

Check out the #abledpeoplesay meme on Twitter for more insights into things able people say.

And I'd love you to tell me what's been said to you.

 

15 comments:

  1. Not to excuse the hurt you've felt but some of the comments I can see someone awkward saying to anybody, able / disabled. For example the eye covering shy children, I can almost guarantee Eve would do that if she met you as she does it most times (sometimes even with people she knows well).
    I do think a big part of the problem is that many topics are taboo / unpolite in our society so people don't learn how to navigate them and say stupid things (for example dealing with grief) on the other hand there are a lot of exceptionally rude and stupid people out there and I'm not making excuses for their behaviour because there is no excuse for people like that.

    ReplyDelete
  2. "It's easier for you to pick that up because you're closer to the ground."

    "How's the weather down there?"

    "It would probably be better for you to have babies the same as you are because it would be weird for the kid to be taller than you."

    "Your house would be so cute with all it's little furniture! Do you sleep in a little bed?"

    (to a child) "She's like that because she didn't eat her veggies."

    "Do you live in a community with other little people?"

    "It's great to see you out and about in the community."

    ReplyDelete
    Replies
    1. "She's like that because she didn't eat her veggies"??!! WTF?!

      Delete
    2. Yes, these are all terrible, but someone actually said that to their children??? Children look to their parents to understand the world around them, including things and even people that they perceive to be different. It's up to the parents to explain that we are not any different from each other. For that parent to say you are "little" because you "didn't eat your veggies" is so disgusting to me it makes me sick...

      Delete
  3. May I lay hands on you and pray for healing?
    Is it wooden? (After I bang my leg transferring into a car dealer's car.)
    Really? You're 6'7"?
    I know someone else who's in a wheelchair.
    We'd tried to take it easy on you seeing's how you're crippled. (!)
    What's wrong with your legs? (Kids will ask this.)

    ReplyDelete
  4. What have you done to yourself?
    At least its not cancer.
    It's just a bit of shaking isn't it?
    I know exactly what you're going through I saw it on Doctors.
    Can you please stop that shaking its distracting.
    Don't talk to her sweetheart she's obviously drunk.
    Excuse me ma'am some people are complaining you're behaving like you're drunk.
    Can't you go faster? I'm in a hurry.
    What are you so nervous about?
    God is just trying to teach you something.
    Come to my retreat I cured myself of lymphatic cancer. It's $10000. Do you put a value on your life?
    You're so inspiring I wish I was like you.
    How are you disabled if you can walk?
    #LivingWithParkinsons

    ReplyDelete
  5. This relates to my daughter, not me ... I have been told by a couple of people with disabilities that I am not entitled to speak on disability issues because I don't have one (which isn't entirely accurate - that's a story for another day too).

    However, my daughter who has physical disabilities and also apparent intellectual disabilities is not able to communicate through words or text, so I (along with her father and siblings) speak on her behalf.

    One of the biggest issues is that people speak to me, not her, so she is constantly ignored and talked over. Yet if she is to grow in her communication, she needs as much interaction as possible!

    Anyway - some of the clangers have been:

    'What did you do when you were pregnant with her?' 'Did you drink alcohol when you were pregnant'?

    'What is wrong with your daughter?' (I have always meant to reply by saying 'What is wrong with your manners?' but I haven't had the courage - yet).

    'Such a shame - she's so pretty.'

    'What will you do when she gets her period?' ('None of your business', I wish I had said, instead of my shocked silence that someone I hardly knew could ask that).

    'Will she ever be normal?'

    'I have some supplements she can take that will cure her.'

    'Why did you have more kids after having her?'

    'She's a burden you'll have to carry for the rest of your life.'

    'They have so much love to give though, don't they?'

    'Got Down's, has she? My friend has a Down's.' (My daughter does not have Down's Syndrome in any case).

    'My heart breaks for you.'

    'Satan causes disability.'

    ... along with many of the comments people have previously written ... any many more I can't think of right now!

    Moi




    ReplyDelete
  6. I couldn't believe the things I saw in that meme. THE EYEBROW WAXING. FOR SERIOUS. And someone I know with depression and the 'Why don't you just get out more?' x 100. Aaaargh.

    I like your explanation for participating in this meme and sharing them here. It is confronting to read them all, and it makes me think over anything I might have said along the way.

    ReplyDelete
  7. "Daddy says we have to be nice to you because you're going to die soon."

    "I was just wondering, can you, can you, can you... READ?"

    "Oh, you know your address! You're so smart!"

    "I'm not going to order any medical tests on you, because there's no point in prolonging your life."

    "You're so lucky! You never have to worry about anything and people will always take care of you!"

    ReplyDelete
  8. Oh, and "Good thing you'll never have to worry about getting pregnant."

    ReplyDelete
  9. Some people just open their mouths and words come out. There is not much brain engagement. I work with a guy like this. Recently a man I work with sadly lost his baby to stillbirth and the other guy said to him, "there are worse things that could happen" WTF! NOt engaging his brain at all!

    ReplyDelete
  10. I have a progressive degenerating neurological/ autoimmune disease called stiff persons syndrome. Here are some things that have been said to me:

    "Won't (fill in the name of any given vitamin here) fix that"

    "You just need to walk more and you'll get better at it"

    "If you just lost a little weight wouldn't you feel better"

    "But you were sleeping the last time I called, is that all you do?"

    (From my mother in law after my husband walked away) "Here push your own wheelchair, the exercise will do you good"

    "You should pray more"

    "God only put you in this situation because you are special"

    "Stop twitching it's bothering me"

    "How drunk is she?" (to my husband right after I had a seizure)

    "Why does she always get to sit in the most comfortable seat, she has her own chair."

    Amazingly most of these came from the same person :-(

    ReplyDelete
  11. Instructors at a recent workshop: "Remember, person first!" Not five minutes later, one of the activities asks for one of the participants to instruct an adult with MS how to hold the reins of a horse. Nothing about how the MS manifests for this person, or how the person is feeling that day.

    Same workshop: "These days, phrases like 'confined to a wheelchair' are recognized as inappropriate." Not five minutes later, that instructor kept using "confined to a wheelchair" to describe people.

    "Sometimes it's necessary to use [the r-word] to describe people! Like when you ask their parents, 'How [r-word]ed is your child?'" Actually, there are better ways to address the needs of a person, like "What are some tools that help you succeed?"

    "At least I'm not using [the r-word] when I'm talking to disabled people." Would you like the "not as big of a jerk as you could be" award?

    "Sorry, that was triggering my OCD." No, that was your perfectionist tendencies showing. Stop using a broad condition as slang.

    "But you're so smart!" Intelligence does not equal capabilities.

    "It's not bothering you." Wow, your reverse psychology worked!

    "Why is such a big deal?" We've been over this. I'd rather not get nasty.

    ReplyDelete
  12. A medical assistant at a DOCTORS office actual said this to me: 'You have Scleroderma at least you'll never get wrinkles.'
    I wanted to say: 'Trust me... what would you rather have...disfigurement, sores, pain, GI issues, lung fibrosis, death.... or some wrinkles? I'll take the freakin wrinkles. So keep your shitty callous look-on-the-bright-side BS comments to yourself you ignorant jackass.'
    What I actually did...raised my eyebrow and left her behind me.

    ReplyDelete
  13. UN-freaking-believable! There should be awards given for stupidest thing to come out of a humans mouth. Like they have to wear a sign to warn people in advance. I've unfortunately noticed some of the dumbest stuff seems to come from family. Over time of gone from "knocked speechless" to snide, angry, sarcastic... but I don't let the super-stupid slide anymore. Do you notice family or close friends can be brutal? Or is it just my special folks?

    ReplyDelete

Thank you for reading my blog. I love receiving comments :)
I really appreciate the time you've taken to write to me, and to share something about yourself.

LinkWithin

Related Posts with Thumbnails