Towards a Scientific Model of Disability

Memory Jar Collection 6

Colour photograph of a woman's feet in white trainers with velcro-based fastenings, with grey trousers above. She is standing on a black rug with white and grey patterns on it.

76) Stephanie's feet

26 August 2011

Stephanie Lai is a Newham-based artist who I met earlier this year when locally based artists began to meet and network together for the first time. Newham is unique in East London in that the level of arts activity is very low, and what there is is focussed on performance (dance, theatre etc). In the past, there were no arts opportunities available locally, and this has impacted seriously on the careers of Newham artists. More recently, regeneration has created more opportunities, but these have very seldom been advertised. For example, none of the arts' commissions in the Olympic Park, nor those in the nearby Westfield shopping centre, nor a major contract in my own area of Canning Town, were advertised. Instead, both public and private sector commissioners have commissioned artists who are already known to them, and these have inevitably come in from outside of the borough. Stephanie is a painter who is currently specialising in dance-based work. She walks around the borough, often working in public spaces such as the local community centre cafe. Here she had just sold four paintings, and had brought wine around to celebrate.

Colour photograph of a Black man's hand resting against a darker leather background.

77) Cliff's hand

2 September 2011

I met Cliff in September 2010, when he helped me to install my Canning Town Folk exhibition in East London. Like Stephanie, Cliff is an artist who is based in Newham, where I have lived and worked since 1985. Cliff was the ideal helper: quick, efficient and willing to make suggestions as well as to take direction. Since then Cliff has worked for me on a number of occasions, and will be helping to install the Abnormal exhibition at the Royal College of Surgeons' Hunterian museum. Artists often make the best assistants to other artists, and the growth of artists' networking means that artists are more and more often supporting each other with their projects.

Colour photograph of a woman holding her wrists together to show off the many different bangles she is wearing.

78) Karen's wrists

2 September 2011

Like many disabled women, Karen chooses to celebrate her body through jewellery and fashion. Here she is showing off her bangles and bracelets, which she says also reflects the part of her heritage which is Romany. I first met Karen through my partner in May 2000, when Karen was pregnant. Karen is the sole survivor of a premature twin birth, and as a result has mild cerebral palsy, while her partner Nick is also disabled, having survived a stroke as a teenager. Although their impairments are not hereditary, the couple came under extreme pressure during their pregnancy to have genetic counselling and additional foetal tests, as a result of which their baby was diagnosed with DiGeorge Syndrome. The baby was much wanted, and as a proud disabled woman Karen decided to proceed with the pregnancy despite being told that the baby was unlikely to live more than a few hours. However, at every medical appointment she was pressurised to change her mind, particularly when the pregnancy was still at a stage where she could terminate it herself by taking the 'abortion pill'. When she went into premature labour, no one at the hospital noticed for several days, and as a result Karen had an infection at the time of the birth so was unable to be with her daugher Eve in the special care baby unit afterwards. The lack of respect for Karen's right to choose to have her baby taught me a great deal, and influenced a number of pieces within the Abnormal exhibition.

Colour photograph of man leaning forward to show his shortly cropped skull.

79) Nick's skull

2 September 2011

Karen's partner Nick is a primary school teacher by profession, but is also a talented photographer and dedicated disability rights campaigner. When his daughter Eve was about to be born, Nick asked me to be his advocate during the process - my partner was supporting Karen, who was concerned that her cerebral palsy would become worse during the birth and that she would need help to convey her wishes. Both parents were concerned that, since they had come under such extreme pressure to abort their daughter before birth, they might need additional support to gain the necessary medical treatment for her afterwards. It was a strange experience for me, as a childless woman, to sit with a group of other fathers-to-be as they took time out to smoke and pace the carpark! I was also very unwell at the time, but found the strength to support Nick and felt very honoured to be asked. Although I wasn't present at the birth itself, I visited Eve within an hour of her birth, filming her for her mother who was not allowed to be present because of an infection.

Colour photograph of a smiling young girl wearing a blue cap and multi-coloured spinal brace over a white t-shirt.

80) Eve's spine

3 September 2011

This is my goddaughter Eve, a few days before her 11th birthday. Before Eve was born, it was predicted that she would live only a few hours as a result of having DiGeorge Syndrome, but this obviously proved to be untrue although she had neo-natal surgery on her heart. In fact, Eve has suffered most from being premature, which necessitated other surgeries and for Eve to have a shunt permanently in her skull to drain fluid from her brain. Her prematurity partially resulted from medical staff failing to notice that her mother Karen was in labour for several days, so that drugs could not be given in time to halt it - when Karen complained of labour pains, nursing staff told her that disabled people simply had low pain thresholds. Karen was also told before the birth that Eve would have tallopes - turned-in feet - but she simply turned out to be tall like her father Nick, which meant that she was in a cramped position in the womb. (Tallopes alone is now regarded as being sufficient reason to terminate a pregnancy, although the surgery to correct it is relatively simple.) Despite not having tallopes after all, we were told that Eve would never walk, and then when this proved to be untrue, that she would always need callipers - in fact she has never worn them. Later we were told that Eve would never talk - in fact her vocal chords had been damaged by the tubes put into her after birth and her muscles simply needed to mature enough to overcome this. Eve has always gone to mainstream school, and the night before this photograph was taken had taken part in her fourth performance with the Young Actors Theatre Islington (YATI), a national centre of excellence for young people interested in the theatre. I first made a film with Eve when she was learning to walk in 2003 - 'Euphoria' - and in 2010 made a yet-to-be-released film with her, 'Super Evie and the Space Alien', before she had surgery on her palate which altered her voice slightly. Here Eve is showing off her new spinal brace, which she needs to prevent her spine developing a curvature in adolescence - her genetic condition means that her bones are weaker than other people's. The first piece of 'Disability Art' I did, My Not-So-Secret Life as a Cyborg in 1997, was about my own experience of wearing a spinal brace, and of decorating and revealing something that traditionally was ugly and hidden. It was an extraordinary experience for me to see Eve happily showing off this completely different design, and to reflect on the unanticipated impact that my work has had since.

Colour photograph of a woman's bare feet in gold gladiator sandals with dark-pained nails.

81) Emily's feet

3 September 2011

Emily came to work for me as a part-time assistant in 2008, while she was training to become a nutritionist and when the Abnormal exhibition tour was just beginning. She soon became one of the most efficient support workers I have ever had, as well as improving my health by making me healthy thick soups to keep in the freezer. In 2009 Emily became pregnant unexpectedly, and so our relationship became even closer. Before she announced the pregnancy, though, Emily was due to accompany me to Huddersfield with another assistant and my partner, to install the Abnormal exhibition at the Lawrence Batley Theatre. Just before we set off, the other assistant announced unexpectedly that she did not feel confident enough to drive my van, while my partner was driving her own vehicle. Despite being up for hours being sick beforehand, Emily got behind the wheel and drove all the way to Yorkshire without complaint, proving herself to be a real trouper. Emily's first job for me since going on maternity leave is supporting me at the private view of the Abnormal exhibition at the Hunterian.

Colour photograph of a dark-skinned male adult hand wearing a wedding ring stretching out next to an infant's lighter hand, with the back of a West Highland Terrier behind them.

82) Asif and Eva's hands

3 September 2011

In November 2009, I travelled to Australia for three weeks to present the themes of the Abnormal exhibition as a keynote speaker at the Australian Network for Arts and Technology (ANAT)'s international symposium Super Human: Revolution of the Species. This left me with the problem of what to do with my Westie Genie while I was away. My assistant Emily was pregnant at the time, and she and her husband Asif offered to have Genie as 'practice', both for the baby and for the family dog they hoped to get in the future. Although Genie had never met Asif before, she went off very happily with him, and was looked after beautifully while I was away. Later, in 2010, after their daugther Eva was born, the family looked after Genie again while I installed the Abnormal exhibition in Belfast. Then Eva was trying out various different solid foods for the first time, and Genie soon trained her to throw the food to her instead of eating it herself! Here, Eva is meeting Genie again for the first time in nearly a year, but they still recognised each other. When it came time to say goodbye and Asif suggested that Eva kissed me, she kissed Genie instead.


Colour photograph of a woman's lower legs and feet shot against the pavement. She is wearing red ankle boots and black fishnet stockings.

83) Julie Mac's feet

3 September 2011

I first met the writer and performer Julie McNamara in 1999, when I became involved in the production of a cabaret show for disabled LBT women, Lavender Ripples which I later ended up directing. At this time Julie was the part-time artistic director of London Disability Arts Forum (LDAF), which was then the Arts Council-funded regional development organisation for arts and disability, and was mostly known for her musical work. I then discovered that we had friends in common, so we continue to meet socially as well as professionally. Since 1999 Julie has developed a career which encompasses comedy, compereing, writing and acting as well as singing and voice training, and has produced several one-woman shows as well as larger productions. Here Julie was compereing the outdoor performances at the 2011 Liberty Festival, which for the first time was on the Southbank instead of in Trafalgar Square and focussed on the arts instead of rights. As she is someone who usually dresses 'butch', it was quite a shock to see Julie dragged up as Dolly Parton and wearing heels!

Colour photograph of a woman with bobbed blonde hair looking down to show off her painted eyelids.

84) Barbara Lisicki's eyelids

3 September 2011

I first met the performer and Disability Equality trainer Barbara Lisicki when we were both on the management committee of London Disability Arts Forum (LDAF) in the late 1990s. Barbara was one of the first artists to identify as part of the international Disability Arts movement in the 1980s, and has been highly influential in its development. As a trainer, Barbara has also worked with most of London's leading cultural institutions, and many people talk years later of how much her work with them changed their attitudes for the better. In recent years, health problems have prevented Barbara from working much, but she is now in the process of relaunching her career. When this photograph was taken Barbara was adorned with some wonderful jewellery, including a silver fox which echoes the meaning of her surname. However, we agreed instead to photograph her eyelids, adorned with make-up.

Colour photograph of a small Black woman's arm clad in a black leather arm brace as she drives her power wheelchair with the other arm.

85) Michelle's arm

3 September 2011

I met Michelle in the early 'noughties', when she was heading up the Newham Independent Living Scheme (NILS). She explained to me then that she had originally trained in IT, but while all of her non-disabled fellow graduates obtained work quickly, she and two other disabled graduates were without work two years later, forcing her to reposition her career. NILS supported disabled people like myself, who receive services from the local authority, to control our own budgets and employ and manage our own support workers. Michelle identified that, although my needs had changed as a result of an illness in 2000, my budget had not changed to reflect this. This meant that I only received support within my home, and as a result rarely left it apart from to work (where I receive separate support funding from JobCentre Plus). It took Michelle several years of trying to get this changed, by which time I had lost touch with most of my non-disabled friends unless they were also work colleagues. NILS closed in the mid-noughties when a new local authority officer took over the management of the 'Direct Payments' scheme, and shut NILS down in order to replace it with an organisation she had worked with in her previous borough. The Shaw Trust then had no experience of direct payments support at all, and in the years since has officially never complied with the terms of the tender despite continuing to hold the contract. Michelle, in the meantime, has been working as a freelance consultant for a wide range of organisations. Here Michelle is sporting a new arm brace, produced for her by the Royal National Orthopaedic Hospital at Stanmore. As with Eve's brace, it was startling to realise just how much the appearance of braces and other orthopaedic aids has changed over the past decade: this one is SO cool.

Close up colour photograph of a pale-skinned woman wearing a pink top and laughing.

86) Claire's mouth

3 September 2011

I first met Claire when I was editing Boadicea, a national newsletter for disabled women which lost its funding and closed in the early noughties. Claire coordinates an organisation called WinVisible, an unfunded campaigning organisation for disabled women. As well as editing Boadicea, I became a consultant for the national disabled women's committee (also now defunct due to lack of funding), and learned a great deal from Claire and other women about disabled women's issues. As with my experience with Karen and Eve, these lessons have definitely influenced the content of the Abnormal exhibition. We chose to photograph Claire's mouth because despite a huge amount of pressure to keep quiet, she will never shut up when she perceives injustice to be done.

Colour photograph of a woman's finger bent in the opposite way to the way joints usually bend.

87) Eleanor's finger

3 September 2011

Eleanor chose to have her finger photographed because, as she said, not many people can do this! Eleanor is another disability consultant - it is much easier to be self-employed than to persuade an employer to take on a disabled person - but is in the process of setting up a mail order and market stall business to sell well-designed disability aids. Although Eve's and Michelle's braces show that some change has taken place over the last decade, the majority of disability aids remain ugly and medicalised. This is an area I have worked in extensively in the past, not just through my website My Not-So-Secret Life as a Cyborg (1997), but also through my involvement with the Adorn, Equip national touring exhibition (1999-2002). I had last seen Eleanor at London Pride at the beginning of July - although not gay herself, she had come to support the disabled people who were asserting their right to take part despite the Pride organisers removing the 'reasonable adjustments' which previously enabled disabled people to participate. It meant a great deal to have her there supporting us at what was the most inaccessible Pride yet.

Close up colour photograph of a man with glasses and beard and a strong nose.

88) Caglar's nose

3 September 2011

Caglar Kimyoncu now runs the organisation Film Pro, but when I first met him was working for London Disability Arts Forum (LDAF). Caglar was instrumental in setting up the London International Disability Film Festival, first at the Lux Cinema in Hoxton and later at the National Film Theatre. However, this closed when the Arts Council withdrew the funding from LDAF as part of a wider programme to disinvest in Disability Arts organisations. Since then Caglar has been able to produce more of his own work, as well as finding ways to survive financially through applying his skills to related areas through Film Pro. Caglar owes his strong features to his Turkish background, and in the past has, like me, worked as a non-traditional model.

Close up colour photograph of a woman with blonde hair looking straight at the camera.

89) Sally's eyes

3 September 2011

The artist Sally Booth is visually impaired but her practice encompasses oil and watercolour painting as well as drawing and photography and she has gained an international reputation for her work: she has very sharp eyes indeed. I first met Sally in 2003, when we were both showing artists' lightboxes at Sadlers Wells after being funded through the Arts Council London's Innovate fund. The work was only being installed for 24 hours as part of a symposium, and the technical challenges were complicated by the competing demands of other artists for the same wall spaces. Sally and I quickly bonded while I struggled with how to install my work Perception I-IV, and our friendship was cemented the following day when we also came up against the less than helpful attitudes of the Wells' staff. I still have the video footage of the conference manager telling me: "I wondered when you would play the wheelchair card, but it won't wash with me!" after I pointed out that I couldn't help my assistant take down my four 2m high lightboxes, and that the Arts Council had paid for the Wells to provide us with additional help. Since then Sally and I have often met while working at Holton Lee, home of the National Disability Arts Collection and Archive (NDACA). It was Sally who initially suggested that I tour the Abnormal exhibition, after coming to see it in its original home at the National Institute of Medical Research.

Close up colour photograph of a man's ear  with an earpiece, surrounded by dark hair and a beard.

90) Jonathan's ear

3 September 2011

I first met Jonathan on 3 September 2011, when he was given the thankless task of stewarding the 'over-height' parking facilities for disabled people attending the Greater London Authority's Liberty festival at the Southbank. Despite pre-booking parking and receiving a permit in the post beforehand, it turned out that a computerised ticket was also needed to operate the barrier and so to get in and out of the carpark. For some bizarre reason the organisers had refused to give these tickets to Jonathan, so as each vehicle reached the head of the queue (the non-reserved spaces were all full), he had to turn them away and instruct them to drive back to the other carpark where a ticket would be handed over before they returned and got back into the queue again. Needless to say, this meant that Jonathan continually had to deal with people who were stressed, frustrated and upset. He had to wear a radio earpiece in order to communicate with the organisers, but all he received back was a refusal to provide him with the tickets. I took this photograph on my return to my van, at which time Jonathan had been on duty for eight and a half hours in the boiling sun, and was due to remain on duty for another hour and a half before finishing. I thought that Jonathan deserved the final spot on the shelf, and would bring back memories of all the non-disabled - and indeed disabled - people who work at events to help to facilitate access. All too often they have their ability to do this undermined by lack of training or coordination from above, which mean they are at the receiving end of complaints instead of thanks. So thank you now!

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© Ju Gosling aka ju90 2011

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