Tips for having a conversation with a person with a visible difference or disability.

(This picture was found on one of the Ichthyosis Facebook communities I belong to.)

 

 

I know I keep banging on about the comments I get about my appearance. The assumptions that I'm sunburnt or burnt. And the way that people just ask me about my appearance before they even say hello. Believe me, I'm not exaggerating, it does happen. And while some may believe these commenters are just curious or concerned, or get the impression that I am forever defensive, it's bloody tiring. (But it does make for good writing fodder.) How many of you are asked why you look the way you do before you're asked how you are?

 

The other night I went on the Footscray Rickshaw Run. I went on my own, and I have no problems making conversation or friends with strangers. There were about 20 people who attended. A couple were at a bench with me as we were served oysters. I said hello, mentioned how great the food tour will be.

The man's response to my food tour enthusiasm was "been in an accident, have you?". He couldn't even say hello or follow up the conversation I'd started. Rude. So the whole time I was standing there he was wondering why my face was red, and felt the need to ask.

I replied "no, I was born with a skin condition", and went back to eating my oysters. I thought that may settle the conversation. He didn't need to know more about me, he hadn't even taken the time to say hello!

But then! "What happens when you're in the sun?", he asked.

It's been particularly hot in Melbourne lately. A heat wave, you could say. It's been over 30 degrees for more than two weeks. And when it's sunny and hot, more people stare, assume I'm sunburnt and ask me questions about my face. So I thought I'd take the piss a little:

"More people assume I'm sunburnt and ask me questions about my red face", I quipped with a smile.

Crickets. He didn't find me funny.

"No, what happens when you're in the sun? Does it hurt more?".

Sigh. I answered quickly and then left the bench. I understand curiosity, but I didn't want to be the topic of his conversation for much longer. There was food to appreciate. I didn't want to be his lesson in diversity. I particularly hated that his curiosity was placed before the decent manners of a "hello, how are you?". I always marvel how having a visible difference has meant what's so personal to me has become publicly commentable.

I read an article about a mother who took a long time to get to love her son who was born with a severely disfigured face. The article states:

'Advocates say that honest stories like theirs help others to accept the disabled.

"Being surrounded or having contact with people with disabilities could have made the transition easier her," said Lawrence Carter-Long, spokesman for the National Council on Disability. "Part of the problem is [the disabled] are segregated, if not by institutions, then by attitudes. We don't see them in the work place or in school, so the fears and the worries are more pronounced. It's not an issue of malice, but of proximity."'

Lawrence Carter-Long is right. The disabled are segregated by institutions and attitudes. A fear remains, and intrusive curiousity seems acceptable.

I remember a few years ago just after I started this blog, a reader told me that she didn't know how to approach someone with a disability or a visible difference if she saw them in the street. She told me that if it wasn't for getting to know me through my blog, she wouldn't know how to react to me if she encountered me in person. "You'd talk to me like you would anyone else you meet", I suggested. I guess I'd make her nervous. She may not know where to look, and I may make her uncomfortable just by being someone she wasn't used to seeing. I was pretty disappointed and felt that I hadn't done my job in breaking down stigmas through writing here. Because my story wasn't enough, she was still afraid of disability, and how to react on encountering a disabled person, due to her lack of exposure.

And that's the thing. Disability and visible difference can be confronting because people are not used to seeing and experiencing relationships with disabled and visibly different people. They see visible difference and disability in the media and assume hero status, or a life to be pitied (like in those awful Facebook one like = one prayer memes), or worse - a villain status (think Harvey Dent's disfigurement in The Dark Knight). And too often, people without disabilities are playing characters with disabilities - 'spacking up' as Stella Young puts it. (Just writing that term has put the Fleetwood Mac song You Can Go Your Own Way in my head forever.) We just don't see enough real disabilities and visible differences (without scar makeup, I mean) in the media, so there's no fair representation of disability in society.

And that makes it hard for people to know how to act around people who are different, perhaps because normal interactions with the disabled and visible different are rarely depicted in the media. We are people too - getting out to do the shopping, going to work, spending time with friends, and even enjoying a rickshaw ride in Footscray.

So while some of you, your family and friends may be curious about people who have a visible difference or a disability, and there may be a certain level of discomfort when you encounter us - for the fear of the unknown - please don't forget your manners when you interact with us. Talk to us like you would talk to those 'normal' people.

1) If we say hello, say hello back.

Our initiation of a friendly conversation does not give you a right to launch into commenting on our appearance or asking why we look the way we do. Yes I will probably answer your questions, with limits, but I won't be impressed if "fuck you're sunburnt" is the first thing you say to me. We don't have to tell you the most personal things about our lives during our first encounter. Don't initiate conversation about our appearance before we do.

2) Don't assume intellectual disability.

Don't talk slower or raise your voice or worse, assume the person with a disability or visible difference cannot communicate. My friend Todd Winther, a PhD candidate in politics who also happens to have Cerebral Palsy, told me one of the things he dislikes about the first encounter with a stranger is being automatically treated like he has an intellectual disability. Todd has written about the way he has been treated by students when he's taught a university class. The assumptions about his intelligence are quite degrading.

3) Don't give us a platitude.

Don't say: "At least it's not...[insert any illness here]", "It's great to see you out and about", or "You're lucky you look normal". And certainly don't tell us you couldn't handle having our condition. Often when I tell people I am not sunburnt but was born with a severe skin condition, they say "oh, at least it's not sunburn, I was worried you got yourself so burnt". There's no comprehension (or apology for their initial question) that my condition has any impacts on my health other than the cosmetic appearance.

Shelley, one of my No Limits mates, has Dissociative Identity Disorder. She hates being told "But...you can't have a mental illness or a disability - you look normal!". "I'm still not sure what I'm supposed to look like??", she says.

Normal is just a cycle on the washing machine, right?

And similarly, don't assume chronic illness or disability only affects older people, and look surprised when you meet a young person living with a condition. Michelle says "With the cane most think I have a sport injury, "too young" is the usual. When I explain [I have Dysautonomia] they mostly look uncomfortable. People always seem shocked that you can get really ill so young, like there's a 'sick' age."

4) Don't be offended if we aren't as polite in answering your question about our disability or visible difference - especially WHEN WE HAVE ONLY JUST MET YOU!!

I am not going to be polite all the time. Us disabled people, we arent always saintly. We swear, we are rude and we get angry. Frankly, if you're the sixth person to tell me I'm sunburt today, I will be feeling pretty over it. And so if I'm rude back to you, it's probably because I'm gob smacked at the audacity of people feeling like they can comment on a stranger's appearance.

My American Twitter friend Carolyn, who also has Ichthyosis, said "People have no business asking. I'll tell 'em what this is but won't answer questions beyond that. I'm 51, so over worrying about offending anyone." And I am too.

Don't expect me to be your lesson in diversity.

5) If you have got to ask, do it politely. Teach your kids that too.


If you ask, preface the question with "I hope you don't mind me asking..." or "Tell me if I'm being rude". Certainly leave this question until after polite hellos are exchanged. And maybe thank us for taking the time to tell you about ourselves, don't just say "I thought you were [sunburnt is the word that I usually get]" and then walk off.

I was hanging out in Bondi with my friend Paul De Gelder last weekend (see below). He has a bionic arm and leg, as a result of a shark attack. The receptionist at the pub's front desk asked him whether he had a bionic arm, sometime after we got talking to her on our sign-in. She was polite, and he told her a little about it. No big deal. Paul and I got talking about the questions people ask us, and he told me of a woman who wouldn't even get up off her seat to ask him about his arm and leg - she just yelled questions from afar. Not polite.

 

I know that sometimes you're just dying to know what's wrong with us. And as much as I hate that expression 'what's wrong with us', sometimes I'm curious about peoples' appearance too. But I don't ask. There's a girl I see around the cafe I frequent, she has a facial disfigurement. I smile at her, she smiles at me. We probably experience similar reactions as we walk down the street. But it doesn't matter to me that I don't know what's 'wrong' with her. Because, there's nothing wrong, and she doesn't want to be bothered by my question about her appearance. She's just getting on with her day too.

 

Related reading: Our disabilities do not inconvenience you.

 

Interview with Paul de Gelder - shark attack survivor.

Last month, I met a man that I call Superman. Paul de Gelder was the keynote speaker at the Layne Beachley Aim for the Stars ball. He talked about how he went from teenage rouseabout to drug user and strip club worker to working in the military - first as a soldier in the Army then as a Navy Clearance Diver. In February 2009, Paul's life changed again while conducting an anti-terrorism exercise in Sydney Harboour. A shark attacked him so severely he lost his right forearm and leg. He told us his story with authenticity, humour and larrikinism, and this is what impressed me so much. 

In his book, No Time for Fear, Paul tells of the moment the shark attacked him:

"I felt an almighty whack on the leg. I didn't think too much of it at first. It didn't hurt.
Half a second later I turned over, looked down to check my leg and saw the huge grey head of a bull shark, one of nature's most aggressive man-eaters. What's more, I could see the upper row of its teeth across my leg.

Its lip was pulled back and its mouth looked enormous.

We must have stared at each other for about three seconds but as soon as I recovered from the shock, I started fighting for my life.

I couldn't seem to move my arm. It was pinned down by my side. I hadn't realised my hand was also in its mouth. I tried to stab it in the eyeball with my other hand. I tried to push its nose, but my hand just slid off, like pushing a slippery concrete wall.

I pulled back my left arm and punched the shark as hard as I could on the nose.

It started shaking me like a dog would a rag doll. The shark pulled me down under the water, continuing to shake me.

The second time I went under I could only see bubbles in front of my face.

I no longer felt any pain. I couldn't do anything. I was totally helpless. Everything was quiet. There was just a deep silence." (Excerpt published in the Daily Telegraph)

After the shark attack, Paul spent two months in hospital, and upon returning home, he felt like his life was over. He was in severe physical and emotional pain. He wasn't sure how he'd continue to live the energetic life he had done before. He hated what he'd become - his body had lost two limbs. But then he made the decision to work very hard to rehabilitate himself. He vowed to work twice as hard as able bodied people, and train three times as hard, so he could lead the best life he could. I remember him saying during his speech "I was told I could go back to work three half days a week. So I went back five full days". He also said that a day after his leg was amputated, he was doing one armed chin ups with the overhead bar on his bed - this did not impress his doctor! 

He showed us images and a video of the shark attack, his rehabilitation, and his work as a motivational speaker and shark conservationist. Some of the video is extremely graphic - showing the damage the shark did to his leg. He said that at most events he speaks at, audience members (usually blokey men) pass out watching this video. 

Paul has an amazing spirit - so much determination and humour. He was so lovely when I met him, posing for photos and talking to me about my work. We are Facebook friends now. I particularly love this motto (from his book):

"Life is here to be lived. And with the right attitude and willingness to deal with the hurdles, it can be bloody awesome."

He has recently left the Navy to pursue writing, speaking and education full time. He is also a passionate environmental conservationalist, highlighting the importance of protecting sharks.

(Source: Paul de Gelder)

He did this interview for me to share with you. 

Carly: Tell me what made you go from drugs and strip clubs to an important position in the Navy?

Paul: "By the time I hit 23 years old, I realised that my life was going around in a vicious circle and I wasn't actually accomplishing anything.I knew there was so much out in the world to see and do but i just had no way of being a part of it, or any idea how to get out of my rut.

On advice from my mum I talked to my younger brothers who were in the Royal Australian Artillery Corps and finally decided to become an Infantry soldier in the Army.

After 5 years I became a bit bored with my job and went looking for a more exciting role in the military, which was when i stumbled across the Navy Clearance Divers."


What sort of things do you do in your job? Where have you been deployed to? 

P: "As an Airborne Infantry Soldier I was trained in frontline combat and peacekeeping. I'd travelled all over Australia,  Noumea and served 6 months in East Timor. As a Navy Clearance diver I've been trained to conduct Clandestine underwater missions, Mine Counter Measures, Underwater battle damage repair and Explosive ordnance disposal on land and underwater."

Tell me about the shark attack? How severe was it? What injuries did you come away with?

"The shark attack was very severe and i only survived because of the first aid of my fellow divers, great doctors and paramedics and my overall fitness.

The shark took my whole hamstring including 22cm's of my sciatic nerve, missing my femoral artery by mm's, it also tore of my right hand."

You spoke about the pain you endured after the shark attack. What was the point when you decided you would fight this and become superman? 

"Hahaha Superman's a bit of a stretch but I had plenty of time to think while laying in a hospital bed for 9 weeks. I realised the crappy position I was in but my pride wouldnt let me give in.

I'd trained so hard and so long to reach this position in my life and I'd be damned if i was going to let a 10 second incident take it all away from me.

There was 2 choices, Ii could wallow in misery and be useless like I once was or I could do just like I'd been trained in the military and get on with the job and laugh at the challenge."

You mentioned three words:
Improvise
Adapt
Overcome 
How has your life changed since the attack?

"My whole life is different now. Some changes were instantaneous, not having two legs for instance and others of a more progressive nature such as my change of career.

As a whole though, life is slower and somewhat harder but thats fine. Just because my life is different doesn't make it worse. I was always chasing adventure and challenges and by god did I get one.

So I treat it as it is, challenges to overcome and adventures to be had."

Tell me about the work you do now - education, motivational speaking and writing?

"It's a lot safer than my last 2 jobs, i can say that and not as adrenaline fueled. It does however grant me personal satisfaction and a sense of triumph in other ways.
I used to be petrified of public speaking and now i'll regularly address audiences in the hundreds. Not only that but my story and life lessons seem to benefit others immensely. This is the greatest reward for my job. The feeling of helping others overcome their challenges in life. Everyone has problems in life, mine are no bigger or better than any one else's, they're just different but there are tools and mindsets that we can use to overcome any problem, big or small. So i feel blessed to be able to share those things."

Tell me about the mateship of the Navy. How have they supported you? 

"Never underestimate the value of good support. Before I could even walk the Chief of Navy announced that I'd always have a job if I wanted one. My mates from the military and my mates that I'd kept since school were by my bedside in an instant, keeping me occupied and laughing. Bonds of friendship are built strongest under hardship and toiling side by side. My friends are more like family to me, always have been."

You said you choose and practice happiness. Why have you made that choice?

"I practice positivity and happiness because whats the other option, negativity and sadness. That's no way to live. I banned negativity from my life because it's useless. I surround myself in strong minded, positive people which breeds and promotes the same in you."

Why are you passionate about protecting sharks when you were eaten alive by one? 

"I'm passionate about protecting all of our environment and eco systems but because of my close link to sharks these days I guess it's easier for me to get a point across. If people can see that I understand the important role they play in our world after what happened and strive to protect them then perhaps they'll listen a little closer and act a little wiser."

How important is humour in your story? I've found humour can lighten the mood when I talk about my condition, is it the same for you? 

"Honestly, there is nothing i love more than a good laugh, it just eases the spirit even in the darkest of times. There were times when I was a soldier where I'd been walking through the bush for weeks only to be dirty, smelly and hungry. Blisters all over my feet from walking and all over my hands from digging fighting pits. My shoulders ached from carrying a 40kg pack and I was exhausted from lack of sleep but no matter how we felt, we could always count on maintaining a sense of humour about it all to keep us going, even if it was laughing at the ridiculous situation we were in."

Tell me what helping others does for you.

"Helping others makes me feel like I have purpose, wether it's one on one or motivating a crowd, peace keeping in East Timor or teaching some one about good nutrition. It provides a sense of happiness and peace that can only be acheived by doing something solely for the benefit of another person." 

(See the subtle photobomb by newsreader Angela Bishop above!)

For more information, see http://pauldegelder.com.