13th March 2008

Looking at the face of Hope

I met Laurence (not his real name) for the first time in Trafalgar Square, where he was taking part in a performance as part of the Liberty disability arts festival in September 2004, in one of many groups of disabled artists. Laurence's group were Amphitheatre of the Arts (Cirque Nova), a small group of HIV positive and negative men who do an aerial circus performance, depicting a story of HIV infection and its consequences, through aerial circus, on ropes and silks. The company gives every appearance of health and strength, as well as mutual support and strong interpersonal bonds.

But Laurence was rather different from the others. He is, like them, gay and HIV positive; but he is also Black, severely disabled with cerebral palsy, and spends most of his time in a wheelchair. He is 42 years old. On the day that I met him, his part in the performance was the expression of Hope. At the end of the show, he stood up from his wheelchair and spoke a poem that he had written, ending with the lines, 'Ladies and gentlemen, you are looking at the face of Hope'.

Afterwards, as we sat in the sun on the north terrace of the square outside the National Gallery, watching the other performers and waiting to take down the aerial rig, I learned that, although he was born and brought up in Tottenham, just a bus ride from the West End, this was Laurence's first visit to Trafalgar Square. I also learned that until very recently he had had only a basic wheelchair, in which he had struggled to get himself about. His friends in Cirque Nova had helped him to get the electric one which he now has. In spite of this, he had insisted on leaving his parental home and having his own flat. He lives alone. Do not conclude from this that he cannot, after all, be so badly disabled. He is severely affected by cerebral palsy, could not, for instance, wipe away the sweat that poured into his eyes on that hot September afternoon, smokes with a special crooked pipe, struggles to stand and can take only a few steps unaided. His voice is also affected, and it takes patience and care to understand him. This, of course, was exactly what he was granted in Trafalgar Square, where the day was dedicated to performers with disabilities and he was heard with respect, and applauded with appreciation.

Since that time, he has worked with his circus friends a lot more. They all work together to maintain their health and fitness. One man, who has hepatitis C, and became, when first diagnosed, skeletal and close to death, now has a strong physique, and takes a role as a roller-skating clown. Another began training on the ropes at the age of 40, and now plays the part of the virus in the show, climbing the silks, hanging from them, and interacting with his fellow performers with great skill. Anyone would assume that he had learned these skills as a youth and had been performing ever since, not that he had learned them in the last couple of years and become proficient as part of a self-prescribed programme to help combat a debilitating disease.

Laurence decided that he wanted to take a more active part in the show, and asked to go on the ropes too. The others worked together to help him. They enabled him to hang from the ropes as they did. For the first time in his life, he hung upside down. As a result of regular working out on ropes and silks with his friends in Cirque Nova, Laurence has grown (or, more accurately, stretched out) to add 12 centimeters to his height. He had no idea he was a tall man. In addition, the activity has given him more control over his limbs, and he is increasingly able to operate his electric wheelchair himself. The circus work has increased his strength, reversed his increasing spasticity, and given him greater mobility and autonomy.

For Cirque Nova and their director – who is from the 4th generation of a circus family and the inspirational leader and teacher of the group – this is all an exciting extension of what they are aiming to do. Their main purpose in creating and putting on their performance is to show the message about HIV/AIDS and safe sex in an accessible and entertaining manner. In addition to the aerial acts, the performance also includes Kathak dance and floor-based clowning and tumbling. It depicts two relationships – one straight, one gay – infection with the virus, anxiety, ostracism, acceptance, and hope. The message is clearly portrayed with no speech, other than Laurence's poem. In Trafalgar Square, an African who watched it said afterwards, 'If you did that show in Africa, the people would understand.

They are used to interpreting non-literary information. They would get the message, and they would wear condoms'. That, of course, is exactly what Cirque Nova would like to do, but they lack funds.

There are many messages here, to be taken from this small group of caring individuals: about inclusivity in our own society, here in London, where a disabled child can still grow up deprived of the culture that his able-bodied fellows take for granted; about using physical activities, such as stretching and extending, to prevent physical deterioration and increase mobility and stamina in people who are living with disabling conditions such as cerebral palsy; about the careful use of physical activity to maintain strength and stamina in people living with life-threatening illness; about the possibilities of educating our own young people about safe sex and drug use, using a medium that is accessible and fun; about educating our society to be more open and accepting of people from various minority communities; and, not least, about taking safe sex education to societies in Africa which have a huge burden of HIV/AIDS, using a medium that does not depend either on literacy or the spoken word.

The practice of medicine in our society still depends too much on medication alone, tending to keep people in the sick role. Of course these people who are living with life-threatening viruses need to take their drugs, which have transformed their expectations; but drugs alone are not enough. Doctors are playing their part, but they cannot provide everything that people need to make the most of life with a disability. What Cirque Nova shows is that stimulating, imaginative activity is health-giving and life enhancing; and health promotion materials do not always have to be in printed form, either on paper or on a website; for some communities these media are inaccessible, while a story told in circus and dance can speak volumes.

By Katherine Darton