Emma Rose Bird

Lucky by Maria Spadafora

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Every morning when I get out of bed with no sudden breathing issues, I am thankful. I count my blessings every single day. I am lucky.

I’ve been in remission with sarcoidosis for 5 years now, yet remain hyper-aware that I could become very ill again at any moment. This is part paranoia, part dread, but also me checking my privilege because I am well enough to get on with life. I will never be the gym-going, regular runner I once was, and still have lingering issues (I can’t do anything too aerobic, struggle with stairs, and have occasional bad days) but I can function well. I’ve been told sarcoidosis can leave scar tissue, in my case in several places on my lungs and lymph nodes, so it makes sense that it still affects me.

For Emma Rose, my baby sister, her ‘hidden disability' is bilateral hip-dysplasia. She was diagnosed at the age of 30 after this then-unidentified deformity in her hips and pelvis had caused such internal damage and unbearable pain (including symptoms such as her legs ‘buckling’ after sitting for long periods) that she sought help. There is a long story attached to this, that I won’t go into, but it was another 4 years before her first surgery – a periacetabular osteotomy, or PAO for short. This involves bone cuts around the hip joint, freeing it from the pelvis which allows it to be rotated into a new position (people often mistake it for a hip replacement, but that is a very different surgery). Recovery is long and slow – around 6 months needing a wheelchair and crutches, followed by several more months with a combination of crutches and walking stick until she can manage longer distances unaided. It’ll amount to a good three years of pain and mobility issues before it’s all over. And there are so many issues her first surgery flagged up that it would take at least one other blog to address them, but let’s just say the NHS is clearly struggling and not all employers have decent provision for sick pay.

The day after Emma's first PAO in 2016

The day after Emma's first PAO in 2016

Following Emma’s first surgery in 2016, we undertook a documentary photo project, capturing her progression over several weeks.  A few months after her second surgery, which took place in May this year, we collaborated on a portrait project.  I am no expert on representation of disability in the media, advertising, fashion, etc, but I think it’s fair to say we don’t see much, and I would love to see more positive imagery.  So we spent a couple of days shooting photos showing her to be the vibrant, colourful, glam young woman she is, whether in a wheelchair, on crutches or unaided.

Walking (sometimes wheeling!) around London, Emma received so many positive comments from passing women - telling her she looked beautiful, they liked her dress, her make-up. Women bigging each other up means a lot. There were negatives, too. I grew particularly impatient with people almost walking into her, too absorbed by their mobile phones to notice the people around them, oblivious to how much pain and damage they could inadvertently inflict on someone in Emma’s position, should they bump into them.

So these pictures are my baby sister being who she is - glam, funny, independent, vibrant, normal, lucky.  Whether on wheels, on crutches, or unaided, she is all of these things. And I’m so lucky to have her in my life.

My Sister, My Muse by Maria Spadafora

Toddler Emma

I've been sticking a camera in my baby sister's face, and sometimes other body parts, pretty much all her life. A natural and talented performer, Emma Rose is usually up for it, whether I'm testing out a lens or experimenting with depth of field. I took so many photos of her and my brother on black and white 35mm film when they were growing up, she once quipped "Didn't they have colour in them days...?"

More recently Emma and I collaborated on a project to document her journey through corrective surgery for bilateral hip dysplasia. Having spent her life 'clicking' her hips into place in the same way others casually crack their knuckles, the pain and arthritis that developed over the years started to become unbearable, and it transpired she'd been born with hip sockets that hadn't formed normally, along with a tilted pelvis.

After a long four year wait (don't get me started on my frustration and fears for the NHS!) in November 2016 she finally had the first surgery to her right hip - a periacetabular osteotomy (PAO). Reconstructing her pelvis means she won't have to have hip replacements until she is older and she'll have the same surgery to the left side next year.

As I write this, almost four months after the surgery, her scar is immaculate, and she's walking really well on crutches (though still needs the wheelchair for distances).

She's my hero. On blinged-up crutches.

Making a Show of Myself by Maria Spadafora

Get me, I just had an exhibition (my first!) in the gorgeous surrounds of Arts@Trinity. I've seen some brilliant dance and music there over the years, so felt really chuffed they accepted my proposal to show my work. And it was quite fascinating spending time there, as it still functions as a church alongside it's arts activities. It was eye opening to observe just how many people still use churches as a place of refuge, and I chatted to some really interesting folk.

I decided to focus on showing photographs of 'Creation' - creative people in Leeds, as the city is home and host to so many brilliant artists and venues. So a whole bunch of dancers, musicians, and visual artists found themselves hung on washing lines between the pillars and sat on easels beside the pews. In many ways it was a celebration of the diversity of arts in Leeds, featuring art forms and artists from all over the world, including Mali, Italy, India, Ireland, USA, France, and, of course, the amazing West Indian Carnival - one of our annual highlights. We had a fun celebration evening with performances by SAA-uk Dholis, Zakiya Hussain (Kathak dancer), and interactive shizzle with Yorkshire Life Aquatic and The (Reduced) Bet Lynch Mob. A massive thank you to them all, as they manage to fill me with pride, gratitude, inspiration and laughter, often all at the same time.

The photo slideshow below is by Lynette Willoughby:

And I can't leave this blog post hanging without thanking everyone who backed my Crowd Funder campaign. THANK YOU!

Pritpal Singh / Elias S Dwan / Frederica Agbah / Simon Lacy

Tim Neale  / Jimmy May / Gina Cattini  / Jo Butt  / Carol Harris   

Anna Zaluczkowska  / Cheryl Killey /  Rob Billson   

Chris Naylor-Ballesteros / Jenny Jet Harris / Bill Bartlett   

Susan Burns / Julia Shemilt / Lynette Willoughby / Emma Adams   

Angela Read  / Sarah Applewhite  / Jude Wright    

Alan Bullimore / Kathy Sadler / Nick Tonge / Michaela O’Sullivan    

Mark Matthews  / Myka Ransom  / Susan Everett / Fran Graham

 Jane Earnshaw  / Sav & Farhan Siddique / Jane Bullimore   

Zoe Parker / Emma Bearman / Maxine & Pat Bird / Donna Rhodes

Emma Rose