It’s been just over year since my Breast Cancer surgery, and I’m in a period of reflection. I’ve often joked that I have more than 9 lives. Then I had an idea. Why don’t I attempt to tell my story using 9 photos?
Photo 1: Whilst this isn’t the greatest of shots, it gives a good indication of my future.
Here I’m narrating in one of the school plays. I was cast as ‘The Narrator’ many times over. Some of the ‘purists’ amongst the Disability Arts scene may scoff and say that I should have been given an acting part. Perhaps, but this was the 1970’s mainstream education’s approach to ‘integration’. “What do we do with the disabled kiddy? She’s good at reading. Great! Stick on her stage to tell the story. Bingo. We’ve found her a part that makes both her and us look great to ILEA (replaced by the Department of Education in later years).”
At 3, I was thrust into an experiment that gave disabled kids the opportunity to attend mainstream schools. There was no rulebook. Everyone involved – parents, kids, and teachers – got no support. We made it up as we went along. But the lack of guidance played to my advantage.
‘The Narrator’ held great responsibility. I had to hold my ‘shit’ together for the play; move the story forward, keep the action flowing. Once in position, I sat up on high to one side, the only character onstage for the entire duration of the play. All eyes fixed on me. I projected my voice, annunciating clearly, and everyone listened, gazing up at me.
Essex people love to chat. I love to chat. I love to hold court. I love to be interviewed. I love to be asked to take the lead. “Will you do the honours, Suzanne?” “Me, oh go on then!”
And it all began in primary school.
Photo 2: It’s all about the outfits. This trait is from Mum. As kids, my sister and I were impeccably turned out. We had new outfits each Christmas, each birthday, each holiday. Mum understood all about the art of fashion and imagery, and how they could be manipulated to create different identities. Exploring my identity through clothes has been a constant in my life.
Here I’m on holiday in North Devon. I’m about 8 or 9 years old. This outfit is really special; Mum chose it for me to wear to my birthday party, but I needed to have several fittings at the shop to get it right. The shop staff were really kind, friendly and supportive which was good as I was a bit hesitant about trying on clothes in fitting rooms.
I’m so happy that I found a photo of me wearing this. It was my first bespoke garment and I felt very grown up wearing it.
Alt text: A teenage girl with short, spiky hair sits at the top of the stairs in a house. She is looking sternly into the camera.
Photo 3: Wooaaah! THIS is a photo! I’m 16 years old, and I’m in my best friend’s house. He took the photo. He had just spiked up my hair.
I’m now a dedicated goth. Out goes the long blond hair and brightly coloured clothes. In comes misery with a matching existentialist wardrobe.
This photo was taken just before we took the train from Essex to Wembley Arena, London, to see what is still my (and his) favourite band – The Cure. I wore the same shade of red lipstick, blue eyeshadow and black eyeliner as Robert Smith. I no longer wore my orthopaedic shoes, because they were ugly as shit, and I was ashamed to be seen in them. (In fact, my friends and I used to throw them around the playground and smash them against brick walls so that they became too broken to wear).
London was having an increasing impact on my life. At least twice a month, I was jumping on the train and heading to Hanley Street where all the independent record shops were, losing myself amongst the racks of vinyl.
It wasn’t the only place that I became lost in. I’d discovered booze a couple of years back. With I.D. for pubs and events not being invented yet (hurrah!), I’d worked out that it was easy for me to buy pints and spirits at the bar. I’d nonchalantly wander up and order. Then the bar person would become flustered, but decide that it would be rude to ask how old I was because I was disabled, and so he’d just reply “Coming up Madam.” “Smashing” I’d say.
It was all too easy. In years to come I’d pay a heavy price with alcohol. Some of you will remember the wild nights, the antics, the bad behaviour, the ‘crying wolf,’ the tear-stained traumas, well good for you if you do, because I don’t want to and they’re not for this blog. I’ve largely stopped drinking alcohol for my own sanity. Apparently, they don’t mix well with chronic pain relief or cancer medication which is great for me. I even did the whole ‘going teetotal’ thing for 3 years. I’m long past needing to be the drunkest person at the party.
Back to the time in the photo. This was my first Cure gig, and it kicked off a life-long love affair. I was, and I still am, completely obsessed with their music and with Robert Smith. Because of The Cure, I fell in love with France and French people (The Cure were way more famous in France before the UK. When I first went to France at 14 on an exchange trip, The Cure were huge like a boy band). I went on to visit Paris several more times before opting to study French and German at Goldsmiths’ College, London. Camus was my chosen special subject. I lived in Toulouse for 6 months.
People say never meet your heroes – that’s a pile of crap. I’ve met Robert Smith twice and he’s a funny, calm, gentle, down-to-earth, soul. The Cure are the best band live. You get a real intense show and if you go to several nights of a tour, the set will be completely different because The Cure have the largest back catalogue known.
A few months after this photo was taken, I experienced the most traumatic event of my life; Mum died. In a community where I’d once felt safe, everything and everyone around me now felt totally alien. Over one summer, life sucked me up, battered me around and spat me back out just in time for 6th Form. Two years later, I left for sunny New Cross, London.
Alt text: A woman in her late teens stands in the pit in front of a large stage at a festival. She’s smiling and making peace signs with her hands. It’s really muddy. There are 3 security men talking, or looking on, close by.
Photo 4: I’m 19 here. I was standing in the pit of the Pyramid stage, Glastonbury Festival. This was the first time that I was pulled out of the crowd as my little legs were killing me. Later on, I managed to get back to the front again during De La Soul’s set because security assumed that I was a kid (I’m 4’3, I stopped growing when I was about 11!) and they were helping all the kids get a better view!
Of course, I was meant to leave the pit immediately after the first time that I was pulled out, but instead I went wandering around backstage on a ‘mission.’ The ‘mission’ was trying to find Robert Smith as The Cure were headlining that night. I had hoped that he was going to take pity on me and let me watch his set from stage-side.
I wouldn’t have been in this situation had it not been for a lack of viewing platforms for disabled people. During The Cure’s set, I had to get rescued from the front again, but this time it was far more serious. The festival’s management had vastly underestimated how big the crowd would be and there were several big surges. Because I was so small, I was being flung against the security barrier and I got my neck trapped on the top of it. Luckily, the guy standing next to me just happened to look down at the moment of impact. He grabbed me and passed me over the barrier to the security who by now, had a steady stream of fans coming over the barriers.
This incident is the stuff of folklore at ‘Attitude is Everything,’ the charity which I founded in 2000 to make music and live events accessible by connecting disabled people and the industries together. As I was gasping for air that night, I thought that there must be a better way for disabled people to access live music and I set about creating a plan to make this happen.
Now the access is much better at live events, and crowd safety measures have really improved. And to top it all, Glastonbury was the first large camping festival to get ‘Attitude is Everything’s’ Gold Standard Charter of Best Practice Award. Hurrah!
This photo is the spark that lit ‘Attitude is Everything’s’ flame all those years ago.
Alt text: 2 women are looking through a whole in a large wall. The metal structures that previously held it up, are exposed. The wall is graffited.
Photo 5: This is the Berlin Wall, or rather, was. This photo was taken a few months after the wall came down and the reunification of Germany was underway. I’d travelled there with hammers and a chisel in my luggage (yes, honestly! That would never be allowed now!) with the purpose of helping to chip away the wall. The woman standing with me (pictured) helped me knock off a small piece of the wall. Now it takes pride of place in my kitchen.
I spent the afternoon with this lady. I think she said she was Canadian. I met her at the wall. She was standing quietly, in deep reflection. She stood out from the others there, who were largely loud, brash Americans, filming themselves making hideous, inappropriate speeeches as if they’d negotiated the Reunification themselves.
Berlin was so amazing during this period. It was buzzing with a new identity, fresh ideas, new-found freedom; the energy was breath-taking.
Stupidly, I gave in to Goldsmiths’ (I studied here from 1989 to 1993 – hello Blur, Placebo, The Kills and Damien Hirst!) insistence that it was far better for me to stay at campus-based universities and I ended up in Marburg. The ‘Powers That Be’ at the college decided that I needed a ‘careful eye’ to be kept on me, what with my ‘additional needs’. Such a load of bollocks because I did what I liked anyway. I ended up having the best and wildest year of my life from 1991 to 1992.
Marburg is a university town not far from Frankfurt (thank god for ‘Langer Samstag’ where each month, I had a whole Saturday to escape to a city). Marburg was very pretty and I made lots of great friends, and we partied like mad. But outside of all this, it was just dull.
I’d been spoilt the 6 months previously because I’d been living in Toulouse. OMG I can’t even EXPLAIN how amazing this beautiful city was with its bars, churches, medieval walls, indie club ‘Subway’ and just so many music-loving people. I really let rip in this town. I didn’t even have to be in lectures at ‘Mirail’ that much, so I spent my days walking the length of La Garonne (I lived in an HLM that overlooked this magnificant river) into town and trying out my French on every pretty boy that I came across.
I was in a flat share with a wonderful lady called Simone. She cracked me up. She worked in the English department of the university but literally didn’t speak a word of English. She promised me that after trying many times, all she could manage was ‘hello’. I adored her. She was about the same age as Mum. Realising that I was a bit of a lost soul, she took me under her wing, providing a gentle steer when needed. She was deeply socialist, political, well-read and a good judge of character. She introduced me to all her wonderful friends and we’d stay up late into the wee hours, drinking – and they’d be correcting my French, of course.
When I got the call from my tutor to say that it was time for me to switch to Germany, I cried the whole day. I was heartbroken at leaving Simone, my surrogate mum. I’ve never had as strong a friendship with another older woman since. I didn’t expect to, I actually didn’t want to. Simone is one of those magical friends in my life who knows what to say and do when I struggle. We’re still in touch now – she’s in her late 70’s.
Alt text: A young woman wearing a woolley hat and glasses, looks out of the bay window of a red-brick Victorian house. The debris inside the house shows that it’s still being renovated. The young woman is grinning.
Photo 6: Fast-forward to 2002 and I’ve managed to hold down 3 ‘proper’ jobs, one of which later turns into a 21-year career at ‘Attitude is Everything’. I’m freelancing, playwriting, flirting with a bit of acting, protesting against disability discrimination, becoming a huge supporter of disabled artists, I’ve got it all going on.
In this photo I’m looking out of the window of my new flat in North Kensington. I’d become a full-time wheelchair user. After living in sub-standard London housing for many years, I’d earnt enough points to get to the top of the housing list. My reward – a one-bedroomed, accessible, garden flat in Kensington and Chelsea. Ma, I’m going up West!
I’d done my penance in housing. After leaving Goldsmiths’, I moved into a single room in Deptford Housing Co-Op. I couldn’t return to Essex. The rent was £25 per week and the social paid £23 of it. But I literally got what I paid for. The house was meant to be for 5 single people and there were 20 people in ours, including 5 members of one family who shared just a tiny room. It was an appalling way to treat people in need. I’m talking early 90’s when I lived in Deptford but Social Housing still desperately under-invested.
My first job took me to the Portobello area. Seeing my dreadful living conditions, one of my new colleagues offered me a room in her flat in Shepherds Bush for £30 a week, so I took it. Unfortunately, after a few months and a serious infection after an operation on my foot which exacerbated the problem that it was supposed to solve, it was clear that I needed wheelchair accommodation. The housing department took on my case. Well, actually they didn’t, they tried to get me to move back to Essex. However, I’d been undertaking my own research and writing directly to Housing Associations, and I’d found a place in Earl’s Court – a bed-sit in an old people’s home. Yep – and old people’s homes are still the only places that you’re likely to find accessible housing in the UK. Luckily one floor of this sheltered housing was allocated to “Young People”. The fun times could continue.
The flats had a really crap stair-lift on the front of the building, and it broke down all the time. As I was using a wheelchair more and more, I had to rely on this piece of shit. Frequently I was stuck in the building and having to call my boss about how I couldn’t come to work yet again (thank god I worked for a Disability Arts organisation who understood my predicament), or stuck outside the building, which wasn’t great because the only option was to call the Fire Brigade to get a ‘carry-in’, or rely on all the unsavoury characters that lurked about after hours to help me up the stairs. (I shouldn’t be so ungratefui to these characters, they helped me so many times).
As ‘per,’ us “Young People” partied for our lives because if we stayed in our bed-sits for too long, the walls crashed in on us and we’d have gone insane. I was content spending most of my time with my mates in the pub until my access needs became greater, as it eventually it did with all my disabled neighbours. Aging is often a faster proccess when you have impairments. All of us were slowly being allocated housing that would better meet our needs. I was the last one to be re-housed and as no more “Young People” had been moved in to replace us, I was increasingly isolated, crawling the walls of the bed-sit.
After 7 years of “Bed-Sit Land” (Marc Almond used to live a few streets away from me in Earl’s Court, and he’d certainly got the measure of bed-sits), I was offered my first proper London home. When I first viewed it in October 2001, it was pouring with rain. The house didn’t have any stud walls or ceilings, so I could see right up into the roof. The garden was filled with rubble and mud. But I got calming vibes from this place. It felt extraordinarily comforting. My Social Worker, my Housing Officer, my O.T. and the Council’s O.T. all had accompanied me for this momentous occasion. After checking that I could manage the steep ramp alone and I could move with ease inside, they offered it to me there and then. I bawled my eyes out because I was so happy and the assembled builders clapped. Picture ‘D.I.Y. S.O.S’.
Great housing changes a disabled person’s life. For the first time since I was 16 years old, I had security and independence. I could cook a meal without burning myself, I could sit down to have a shower, I could come and leave the flat as I pleased because it was all on one level, I could sunbathe in my own garden. And I could invite ALL of my friends over.
Alt text: A woman sitting in a wheelchair has her back to the camera and she is leaning over an electronic keyboard to play. She is in a rehearsal studio.
Photo 7: Ah, one of many bands. I think this photo was taken in Bush Studios and I’d be in my early 30’s. I was playing in a band called “They Walk Among Us” (I know it should be ‘amongst us’ but we didn’t want to get sued by the shop which bore a similar name – the shop was located in Kingston or Staines; I don’t quite recall). I was in a ‘sort of’ inter-band, ‘on-off,’ ‘is it or isn’t it a relationship’ ‘thing,’ and as we all know, this never goes well in bands, so I left without playing any gigs with them. Then I joined an all-female punk band which couldn’t have been any more diverse in age, background and disability. It was brilliant and I definitely thought that I had found my band soulmates with my quirky Korg complete with Vocoder, and lyrics. Except I had to leave again because the drummer criticised my lyrics.
With me, it’s always been about the lyrics. Fair enough, you don’t like my playing, you might get annoyed with me if I get knackered at rehearsal, I can take it, but if you say one bad word about my lyrics, that’s me out. I don’t let anyone touch my lyrics. NOT ONE WORD can be changed.
But at the same time as playing with the punk band, I was in another band, ‘Besta Vista Social Club.’ It couldn’t have been any more different. We played Cuban, Latino, Reggae, traditional songs from Africa, Salsa and “Who Let the Dogs Out”. You might arrive at rehearsal in a bad mood but you left feeling a million dollars, such was the beauty of the music and the strengths of the relationships in ‘Besta Vista’. The band was made up of mostly disabled people and led by Neville Murray (‘Jah Wobble and the Invaders of the Lost Heart,’ ‘Klub Mundi’), a great disabled musician and mentor – another wonderful friend who gently guided me back when I went off the rails. I played in this band for 6 years. At its height, we had 30 members. Because the Congas were too big for me, Neville taught me how to play all the small percussion instruments; the Klaves, A-Gogo, Tambourine, etc. 5,000 people came to see us in Trafalgar Square for ‘Liberty Festival’. I played it like I was on the Pyramid stage.
Neville sadly passed a couple of months ago. I’ll miss him forever. To remember him, a few of us came to together to play a few of the old tunes in my back garden this summer. We hadn’t played for 14 years but once we started playing the old tunes, it was like we’d never been away from one another. The spirit of Neville was there, saying “no, you’re behind the beat” or “thank you” if he was satisfied that you had mastered your part.
Alt text: A woman in her mid-30’s sits in her wheelchair with her arms outstretched by her sides. She’s laughing. She’s pressed against a white wall. She is fully clothed, but she’s covered from head to toe in sand.
Photo 8: I’ve been to hundreds of festivals. Reading is my favourite because it was my first. But there’s something really special about going to a festival on a holiday campsite and staying in little chalets by the seaside. It seemed so quintessentially British, but OH so very debauched when the party arrived. Labels would host their own parties from their chalets. I’ve lost count of how many times I went to ‘All Tomorrow’s Parties’ Festival but at one stage they upgraded from Pontins, Camber Sands, to Butlins, Minehead. Just one very surreal night was watching Iggy Pop stage-dive into the crowd, in a large ballroom with swirly carpet (now soaked and sticky with beer), complete with a huge silver disco ball spinning above. And then The Melvins came on afterwards at 3 in the morning with the redcoats doing the Conga (I may have made that last bit up 😉)
It was so much more than the music at ‘’All Tomorrow’s Parties,’ it was the books, the bespoke merchandise, the artists milling about and easily accessible to the fans, the curators such as Vincent Gallo and Sean Lennon. I watched Yoko Ono, PJ Harvey, and discovered ‘Bat for Lashes’ there.
This photo was taken at the Camber Sands venue by my then PA, Katherine, outside our chalet. We’d taken a break from the music to walk on the beach. Camber Sands is known to be windy, but this day was exceptional – we got sand-blasted at 90 mph! When we returned to the chalet, we’d brought the entire contents of the beach with us. I had sand everywhere, hence my laughter.
Good times, no GREAT times.
Alt text: A man and a woman are sitting together outside. This is a selfie. They are both smiling.
Photo 9: With my gentle, sweet-hearted French ‘copain’ Stephane (oh, those pretty French boys!) We’re seated on a bench in our front garden. We’re smiling because we’re celebrating the end of my Radiotherapy. I’ve insisted that we drink champagne in the pouring rain, whilst listening to my favourite tunes from over the decades.
Within our smiles, there’s relief. We’ve both survived my life-saving operation that was delayed for 4 months and my 5 days of partial therapy. By February 2021, we would find out via a mammogram that I was cancer-free, but that we’d be facing me having 10 years further treatment.
“I never realised how much I wanted to live until I thought I was going to die,” Tracey Emin.
The Musings of Spu 