Social Documentary

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.

Documenting a Sikh Wedding by Maria Spadafora

In August I had my first taste of wedding photography. It also happened to be my first Sikh wedding (Anand Karaj).

I first met the bride and groom, Seetal and Kaviraj, though my work with South Asian Arts UK. Both are talented artists, and Seetal also runs Two Brown Girls with her friend Aaminah.  They know my pictures and how I work as I've photographed various Indian dance and music events, so I was enormously flattered when they asked me to document their wedding. They wanted to capture everything naturally, keeping poses to the minimum, so I was up for the challenge. I approached it in the same way I would any event, capturing characters, details, moments, and movement as stealthily as possible. I felt it was important to be respectful and as un-invasive as possible, particularly during the ceremony. There's nothing more annoying than a photographer getting right in your face!

Seetal and Kavi briefed me on the different celebrations and ceremonies I’d be documenting from Seetal’s side over the three days. Another photographer covered Kavi’s end in Leicester, and we were both there for the main event. It was full-on hard work, but enormous fun. I was too hesitant at times, which meant I definitely missed some photo opportunities, but on the whole I felt I'd captured the important things - family, moments, colour, detail, emotion, tradition, and, of course, Seetal's stunning wedding outfit.

Maiyan / Rangoli / Mehndi

The Maiyan is a cleansing ceremony, performed a few days before the wedding to prepare the bride and groom for marriage. Family members contribute to a Rangoli (a colourful design, in this instance created with powder paint, but it can be done with rice) before later smearing the bride with a wonderfully yellow blend of turmeric, channa and mustard oil. We were blessed with a sunny day for this ceremony, so I like to pretend these were taken in India (we were in Leeds). Seetal also had mehndi applied to her hands and feet by talented artist Dilrani Kaur Lall  with help from Sukhmani Rayat. Whilst they laboured over this, all the women in the family partook in a Punjabi tradition known as Gidha Boliyan - dancing and singing folk songs, some of which get a bit cheeky. Later, family and friends gathered for a Sangeet evening - a party beginning with folk songs and ending with some lively Bhangra. Punjabis really know how to party!

Chura Ceremony

On day two I attended and photographed a ceremony which involved the maternal Uncles dipping chura (bangles) in milk then placing them, in a specific order, on Seetal's wrists. The bride is then dressed in a red chin (scarf). A lot of family pile into an average sized living room! Presents are shared, speeches made, tears are shed, and fun is had. Oh, and it probably goes without saying that there is food. There is always food. A lot of food.

Milni / Anand Karaj / Doli

On the 'big day' the Bride finds a space to finish preparing herself as the Groom's family arrive at the Gurdwara. The Bride's female friends and relatives jostle at the back door, indulging a jokey ritual with the Groom's relatives about whether or not to let them in. Then a more formal ceremony takes place, the Milni, where the person in charge of the scriptures introduces key family members to one another. 

The marriage ceremony itself is called Anand Karaj, where Kavi arrives first to sit before the Guru Granth Sahib. Live Kirtan music is played, led by the rather awesome Kirpal Singh Panesar. After Seetal enters with her family and sits beside Kavi, Seetal's Mum, Keran gives her daughter's scarf to her new son-in-law, known as the Palle Di Rassam - a clearly symbolic and emotional moment.  The formal part of the ceremony ends with the Laavan, the circulation of the Holy Book before sweets are given out to everyone. Guests patiently gather to give blessings to the couple and have their picture taken in turn - the point at which I get serious cramp from endlessly snapping!

After yet more food, both families later return to the Bride's family home, only this isn't straightforward, as there has to be more slapstick tussling at the front door and money exchanged before the Groom is allowed to enter! Finally, after even more food, the day ends with the Doli - rice is thrown and Seetal leaves home with her new husband and family. Like any good wedding, it gets a bit teary.

I can't thank the families enough for this wonderful experience, and wish them the absolute best! To see more images from this work, hop over to my Flickr.

Gear: I used my trusty Canon EOS 60D, mostly with a 55-250mm lens, and newly acquired 70D, with a 18-55mm lens. Occasionally I used a wide 10-18mm lens. For better or worse, I always use natural/available light.