Love doesn't discriminate.

When I was asked to write this for Don't Dis My Ability, I had writers block. It came from realising me planning a wedding is just like any other bride to be planning a wedding. Love doesn't discriminate.

I will be a bride in March. Although my parents encouraged me to be anything I wanted to be, I never thought I'd be a bride. I tried dating for many years, but it was hard to meet a man who was ok with my severe skin condition – Ichthyosis.

But in just three months time, I will walk down the aisle in front of friends and family wearing a very traditional dress and declare my love for Adam, a kind-hearted, funny, handsome man who loves and cares for me as much as my parents.

When it was suggested I write about planning my wedding, I experienced writers block. Apart from procrastination, it took me a while to put my finger on it. Then, as I was completing bridal registry cards, I realised the reason.

It's because my experience planning a wedding, and my anticipation for the big day, is probably no different to my engaged friends who don't have disabilities.

Like them, I'm scouring Pinterest for floral inspiration. I'm emailing jewellers on my lunch break, compiling the perfect reception playlist (full of bogan Aussie rock, please!) and ensuring my hens night is phallus-free. I've been trying to exercise (read: buying a lot of active wear) to prepare my bridal body. That's counteracted by our cake maker friend offering Adam (my fiancé) and I sample trial wedding cakes each time we see him. And my fiancé and I are saving frantically. Weddings are expensive! But so exciting.

There are a few adjustments to make me comfortable on the day (lighting and heating in the venue, and a cover up for my arms), and a hairdresser that will make me feel beautiful, but more importantly, Adam and I want the venue to be accessible for our guests. We've got lots of friends with disabilities - and we want to make them feel welcome and comfortable. We are making a statement about marriage equality - in our ceremony - mentioning same sex couples, people of colour and people with disabilities - because sadly, inequality still exists across these groups. Even if our guests didn't have disabilities, I still think it's important to show we value accessibility, by choosing an accessible venue and making a statement about equality.

It’s often assumed loving relationships do not apply to people with disabilities. In my circle of friends, that’s far from the truth. Earlier in the year, I wrote a blog with tips for moving in with your partner. I shared the post on Facebook and the commentary below it made me beam. All of the comments were from my friends with disabilities, expressing their love for their partners and offered advice. They suggested things like creating rosters to share the housework, and writing love letters to surprise your partner. As cliched as it seems, the romance they wrote about was the same tummy flipping, heart bursting, lusty love that my friends without disabilities feel. Their love was diverse, proud and open. It made me so happy.

Outsiders often view getting into a relationship as the holy grail for people with disabilities. They see it as a big achievement, because disability is often portrayed as undesirable, unattractive even. Love is, in my experience, sometimes harder to come by because of disability, but not impossible. Parents hope that 'normal' will be their disabled child finding love and having a family when they grow up. My parents never wanted this to be my ‘normal’ – they encouraged me to find success in other ways, and I did. When I stopped chasing the relationship dream and came to love myself, I found my love.

My writer's block disappeared when I thought of all the things I love about love - they're universal.

Finding someone you love and who loves you back is the ultimate validation.

Love to me is finding a person who doesn't look past disability but sees it as part of my identity. Love between two disabled people or a disabled person and able bodied person is something to celebrate. Not because it's an achievement or that they have somehow overcome the odds but simply because it is beautiful.

Love is not less or more deserved because of disability. Love for us is not different to love for our able bodied friends. It's not something to be surprised about either.

Love is love.

And I can't wait to declare it to Adam in front of my family and friends next year.

 

Hello. Real, not curated.

After my amazing day on Friday (see my Facebook or Instagram for details - and stay tuned for a little wrap here soon), I've not been so well over the weekend. I'm tired, my skin is a little sore on my ribs and I feel sick in the tummy. I've been in bed for a lot of the weekend. Travel, socialising the heat and a long day has taken a lot out of me.

I've put all writing on hold and am just focusing on getting better for work this week. 

Life's great, but not all the time. I am very mindful not to present a curated life online. I do live a very full, busy and active life, which may seem out of the ordinary for someone with a chronic illness. I am aware of that privilege. 

Here's the reality, when I'm not doing all the amazing stuff: Much of my writing is done in bed. I wear pyjamas a lot. My house isn't very tidy. Sometimes I get takeaway. And I nap a lot. It's all part of self care so I can get everything I want to do done.

Anyway, just checking in to say I'm here but a little under the weather. Hope you've had a good weekend! ❤️

Two year anniversary.

Gosh. I'm so busy I've had very little time to write here. Regular writing should commence soon. I've got so many words inside me. Today I wanted to do a quick post - about a two year anniversary.

It's two years today since Adam asked if he could be my boyfriend. He's grown so much since we've met - his confidence has soared and he's started his own business. We aren't celebrating together tonight - I am a handyman widow (like a cricket widow). He's assembling someone's furniture in Northcote. I'm so proud of him. ❤️

 

 

Falling

Last week was a big one and so this past weekend has been spent resting. I had a nasty fall midweek, which has left me in pain for days. I took a tumble while walking out of my manager's office - tripping on a chair leg and smacking my knee and hand into the metal edged door. I immediately sat down, laughing it off, then applying a cold compress to my knee and elevating my leg. Overnight, my body stiffened and I woke up with a very sore foot in addition to the other injuries. The skin on my knee healed quickly as always, but it's my joints that feel rickety.

Adam and I were like ships in the night - me at concerts and him at Cubs and handyman jobs most of last week. Dinners were eaten out or on the run. We saw each other briefly after 10.00 pm on some nights, for a quick talk about our day and a mandatory cuddle. I missed him a lot. When I told him I fell, he rang me straight away, asking if he needed to come home. I said I'll be fine. He got home late, and straight away removed the quilt to look at my leg. Then he applied antiseptic cream to it. I hadn't done so because I feel tougher than my skin looks. It'll be right, I said. He wanted none of that, showing me such love in looking after me. I fall for him - in a safer way - every day.

This was my first big fall since I fell down the stairs in 2012. I cut both knees then. I'm clumsy. This time, three years on, it hurts more to walk. Each time I take a step downstairs, my joints ache. I went to see Fleetwood Mac a second Tim (!!) and when I got home, I felt like I'd been for a run. Adam has helped me stretch my legs out. I feel less sore, steadier.

When I was looking for a place to live in Melbourne, I had a fall After a long, hot day of househunting. Mum and I were so over it, and I wasn't watching where I was going. I tripped over the pavement, and Mum couldn't stop laughing at me. I did not see the humour in it at the time. Nor did I see it when I suddenly fell and did a drop roll on a flat source while on holidays in Tasmania. So. Clumsy.

Mum fell over a few months ago - she fell chasing a chicken. Skipping over in the mud, she did the splits. She used to be a very good gymnast in her teens and 20s. But that night in the chicken run left her bruised, swollen and in need of an ambulance.

My Dad tried lifting her up but she couldn't move, describing herself as dead weight. She had us in stitches telling us about how Dad asked if she had put on weight. "This isn't the time to comment on my weight", she scolded him!

It's funny how as a child, falls happen so often. We fall when we are running and playing. Scraped knees were a reminder that we were having fun. We bounced back quickly, agile limbs and a rush to get back to playing. But as an adult, falls frighten us. They make us unsteady as we walk over pavement cracks weeks later. And we feel so silly at our clumsiness.

Have you fallen down lately? How long did it take you to feel steady again?

 

The pitfalls of homogenising disability appearance

I've got a few doppelgängers. They span generations - some are 20, 30 years older than me, and others are toddlers. Genetic similarities thread through strangers across the world, giving us a sense of knowing and belonging, even though we might not know each other.

We all bear a strong resemblance because of a severe skin condition called Ichthyosis. It's equally intriguing and comforting for us, and confusing for others.

I was at a party recently, catching up with old friends and making new friends. One friend introduced me to her friend, whose eyes immediately lit up when she saw me. She recognised me. Due to my red face, I'm easily remembered, and sometimes (now more frequently) recognised because of my writing. It is quite exciting! She told me she'd seen me on a friend's Facebook that week, and was adamant I'd been in Brisbane. I hadn't - though I was on the Gold Coast at the time. She finally found her friend's photo - her friend was indeed with a female with a red face. But it wasn't me. Her friend had met my nine year old friend Lucia, who also has Ichthyosis (the same variation as me).

I got a little frustrated and told her that I know she didn't mean harm, but I think there can a problem with people without disabilities seeing one person with a disability or facial difference and thinking they've seen them all. Media portrayal of disabilities seem to make people experts! She understood where I came from and apologised. I also told her that my little friend is nine, and I am 33! (My beauty regime of paraffin and natural facial peels leaves me looking super youthful!) And of course this conversation inspired me to explore the topic more, and so here I am.

I encounter being mistaken for others with Ichthyosis a lot. It's a rare condition (20 per million), and patients with the Nethertons Syndrome (mine and Lucia's type) and Harlequin types do look very similar. Sometimes people stop me to tell me they've seen me on TV - and I smile and say I was on Channel 31's No Limits for three seasons - very pleased someone has actually tuned in! No, they correct me. They've seen me on Embarrassing Bodies or Medical Incredible. That's not me, I tell them. But yes, they've seen me and my sister, and how much I scrub my skin. And they ask me when I moved to Australia, because the show's subjects are English?. And I tell them again, that's not me - I'm an only child and am Australian. They shrug and tell me they know so much more about Ichthyosis thanks to these shows, and I tell them I would never appear on a show like Embarrassing Bodies "But you look just like them", they continue. Yes. Yes I do.

Professor Ingrid Winship, Professor of Adult Clinical Genetics, University of Melbourne and Royal Melbourne Hospital tells me the reason patients with genetic conditions look similar is a complex one.

"The DNA instructions that cause the health issues may also have an influence on the development of our facial structures. We are able to recognise faces from an early age, and it is possible that the relationship of facial features ie how widely spaced one's eyes are or the shape of the chin, which people with some genetic conditions have in common, that create a "pattern" which is easily recognised", Ingrid says.

My new friend from the party can easily be forgiven for mistaking two people with Ichthyosis. There is a genetic explanation that has taught me not to be so defensive when encountering these doppelgänger questions.

"A child with Harlequin Ichthyosis, for example, may look more like another child with Harlequin Ichthyosis than their own sibling", Professor Winship continues.

When I've met others with Ichthyosis, I've been struck by how alike we look, and how different I look to my parents (despite Professor Winship telling me I look a lot like my Mum). It's like looking into a mirror, despite any age difference. We have similar face structures and hairlines, a slight build, and I've been told our pinky fingers and toenails are curled. It's like we are one family. Parents of children affected by the condition tell me about the cute instances of their child seeing another child and thinking it's them. It must be such a relief for them to see others like them out there. It has been a relief for me. It was amazing to see a room of similar faces at the Australian Ichthyosis meet earlier this year.

Professor Winship says "Being a bit technical, there is a genetic effect recognized called pleiotropy- that a change in one single gene can cause multiple effects on the body's health and appearance. This is seen in Marfan Syndrome, where the eye, the heart and the skeleton may all be affected by a single genetic change."

Prue Hawkins, who was a close friend of the late Stella Young, has often been mistaken for Stella. They have the same disability, both had a nose and lip ring, and they shared the love of knitting and dancing.

I asked Prue why she thinks the confusion happens. "I think people see the wheelchair, then a small female in it and just assume we are the same person. Even though for years I had long blonde hair and hers was short and a variety of colours", she tells me.

Prue also relates to my "seen one, seen 'em all" theory.

"Stella and I used to joke that there could only be one crip in the village (circa only one gay in the village from Little Britain)", Prue says. "If you look at photos of us together, we really look nothing a like. But again, people see the wheels and assume we are the same person.

"It started as a joke between Stell and I, but in the end got so frustrating. Because heaven forbid there be not one, but two balshy, powerful and capable women in this world who were willing to "stand up" for what they believed in (pun intended)."

I first came to know of Prue when she appeared on SBS Insight, discussing issues around disability and employment, and a fellow guest mistook her for Stella. It was amusing, but also detracted from an important issue, and raised another - the perceived homogenisation of disability appearance.

The Insight guest couldn't get past Prue's resemblance to Stella to address her by her correct name.

"I was mainly embarrassed for him if I'm honest. He said he was so excited to be meeting Stella, and I kinda felt bad for him that I wasn't her. I think he was so nervous about being on TV, so I just let it go. I didn't actually correct him, Jenny Brockie (the host) did".

Prue believes the idea of "only one crip in the village" can be reduced through increased exposure of people with disabilities. "The more PWDs are out there, in the community and living a normal life (whatever normal is), the less of a novelty act we will become."

There is still and surprise and inexperience in talking to people with disabilities, and being mistaken for someone else is tiring. But the genetic explanation helps me understand why this is a common occurrence. Our brains are wired to recognise similar characteristics - genetic patterns. And while I (and Prue and many others) think it's important to take a few moments to think before you speak to disabled people, taking a step back from the personal experience has made me realise what an interesting phenomenon this similarity of appearance is. I can't speak for others with Ichthyosis, but I think it's pretty amazing I have a whole 'family' out there who truly shares some of my experiences of what it's like to look different.

This article first appeared on Daily Life. I loved writing it, and my editor Candice gave me wonderful feedback, which encouraged me to explore more complex themes in my writing.

"What a TREAT to finish the week with your piece. As you know I'm a big fan of your writing but this is definitely one of my favourites. It's SO interesting, heartfelt, and well researched. I really liked the way you told it -- and the reflection of having "a family out there who share your experience of what it's like to look different". What a wonderfully powerful note to end on."

 

Fleetwood Mac live at Rod Laver Arena, Melbourne.

I used to do concert reviews on my blog. I haven't done one in a while. When I got home last night I wrote a short one for Facebook. I wanted to record it properly to look back on. So here it is.

Last night I experienced one of the best concerts I've ever been to. Fleetwood Mac. Wow. A concert I dreamed of going to since I watched The Dance in 1997. I feel so lucky to have been raised on their music - listening to them on record and cassette from when I was very small.

The music tonight was outstanding. The professionalism, talent, engagement with the audience, energy - amazing. Although we had seats in the nosebleed section, the band treated us like we were front row.

My highlights:

- Stevie Nicks' tambourine, and her pep talk about "reaching for the stars (stores) and following your dreams" before Gypsy. Landslide was perfect.

- Christine McVie's voice. Her golden honey voice. And her gratitude to be back playing with the band. Songbird was beautiful.

- Lindsay Buckingham's anecdotes about the band were interesting. He has so much energy. Big Love was a stand out.

- The tinkles Mick Fleetwood made on the glass. His charisma. Those red shoes. He must have a great heart to play a three hour set on the drums.

- That John McVie is in good enough health to have toured 110 shows and counting.

- The confirmation that the past is in the past and the band is together now. "The Mac is Back", Mick Fleetwood said.

My only regret is not shelling out more money for a better view.

Loved it. A million stars.

 

Well-meaning behaviour and disability. I was only trying to help.

(source)

 

Back on a rainy Saturday evening in August, I was travelling home on a train. I'd just been at Quippings rehearsals, fittingly discussing disability politics, including the behaviours of over niceness and pity thrust upon disabled people. I was looking at social media on my phone, not speaking and not in any need of assistance (I would ask if I was - and that's rare). Suddenly I was faced with this situation:

Stranger on train: "excuse me, would you like a wet wipe?"

Me: "no thanks."

Stranger: "I think your face is a bit sweaty and you could use one."

Ahh they mean well, don't they?

So I wrote about it on Facebook. Those exact words actually. I wanted to show I was amused and exemplify the audacity of strangers. This is what I call intrusive behaviour, no matter how well-meaning their intentions were.

What followed, and even harder to take than the initial intrusiveness, was the responses from friends and acquaintances. They argued that I should educate at all times, and that kindness was a motivator.

While I do educate where I can, I also have the right to decide when I want to educate. Most times I just want to get on with my day. There have been suggestions I should carry cards with an explanation about Ichthyosis, and hand them out to the curious. Depending on how they ask or approach me, I tell them I blog and give them a business card. I don't put anything about Ichthyosis on my card because I don't want that to be defining. And I've also seen how people react to info cards, and it's not positive.

Then there's the kindness thing. A friend said this woman on the train was probably being kind, and she hopes my response doesn't put her off being kind in the future. I totally see this point, but I think people need to consider whether a disabled/sick person is really in genuine need of assistance, or whether they're just being nosy themselves. I would have preferred it if she had said hello, and then politely asked about my skin.

Many told me they have been raised to offer help to people with disabilities. There are so many times I've seen people genuinely in need of assistance and no one stops to help. But often assistance is offered when we are just doing average things. Like eating or reading or using an iPhone to read the internet. Kindness is lovely, but kindness in this form can be attached to assumptions. These assumptions of helplessness that are rude and awkward and pitying. And it's so hard to explain that to people who might not have encountered this in any form.

This is such a difficult issue for me to discuss. Sometimes the comments from others around this topic are harder to digest than the comments received from strangers. It makes me want to censor myself. It's judgmental and demanding at times. I also think that for people who don't encounter these kind of questions on a regular basis, it's easy to dismiss this as caring or curious. Many friends with disabilities and facial differences get it - sharing stories of intrusiveness that I relate to. I read this great blog about the disability voice - the one we put on when we are offered assistance.

I recall Stella Young saying how a lady offered her help in an airport, and Stella asked "help with what?". She didn't need help reading a book. And the lady responded with "I told you all disabled people were rude." And so it's these assumptions about the help we need or the bad lives we lead, and also our responses that create this cycle of further assumptions about our attitude to this help. Assumptions that disabled people are ungrateful and rude.

Similar to Stella's experience, I once had a woman in a London theatre ask if I wanted a drug to stop me scratching. It was dark, she couldn't see me well, and obviously we did not know eachother. She said she was a doctor. How could I accept that? - she's a stranger to me. I'm allergic to some medication and I wasn't about to rattle off my allergies in whispers during a Queen musical. "I was just trying to help", she sighed. And so my declination of her kind offer made me seem ungrateful.

These questions put us on the spot. They are loaded with the assumptions that we need help (and perhaps pity) when we are really just getting on with our day. And they come with the expectation that it's our job to educate them, and be polite - Every. Single. Time.

It's tricky to respond to well meaning offers. If we decline, no matter how politely, we are seen to be rude, creating a bad experience for someone interacting with a person with a disability. And if we really do need help, like a seat on a train or intervention in an abusive situation, how can we ask for it? And I do try to be friendly, because that's in my nature - when interacting with anyone about topics unrelated to my appearance.

In our Quippings show, we did a word score where we each said a word or phrase related to a theme around disability. One theme was over-niceness - showing examples of well-meaningness. Jarrod's phrase, said with a frustrated tone and gesture, was "I was only trying to help". And that parody is so true. When we talk about these experiences of well-meaning people trying to help us, people respond with "they were only trying to help". When I told the wet wipe woman on the train that it was rude of her to assume things about my appearance, she said she was only trying to help. And so, supposedly, I framed her experience with disability as a bad one.

There's a difference between being uninformed about a disability and intrusiveness and rudeness towards appearance. That comes down to politeness and how people enquire. Start with hello. Don't just launch in. And being mindful that if someone looks different to what you're used to, it probably means they've been asked time and time again about their appearance. (I really liked the comment Stella made in an article - "It doesn't matter how we got like this. Really. If you're just sitting next to one of us on the train, or taking our order at a cafe, you don't actually need to know.")

Strangers' well-meaning, kind intentions are rarely malicious, but even so, it's rude, presumptuous and intrusive (and tiring). We are not here to satisfy someone's good deed or be their conversation starter.

Kindness begins with hello. And then, maybe, you can ask me if I need help.

(Image from I Laughed at the Crippled Girl Facebook. Visit Ally Bruener's website.)

This piece has since been republished on Daily Life.