Sheer stage presence. Horrora Shebang is the drag persona of Otto Baxter, an award winning British actor and film maker with Down's Syndrome. Photo / Erik Messori/Capta
The stars of Drag Syndrome have performed at venues from London's Southbank Arts Centre, to Milan and Mexico. But despite their talent and professionalism, the biggest obstacle they face is stereotyping, writes Peter Wilson. Photography by Erik Messori.
Horrora Shebang has just whipped a London crowd of 8000 into a roar of whooping cheers and now the bearded drag queen is sitting quietly backstage telling me how he came up with his stage persona.
Horrora, whose real name is Otto Baxter, is short and stout. He has a bright red wig, lurid green eye shadow and a purple beret sprouting a dozen small "Hello Kitty" dolls.
"Well, I love horror films," he says, "and Horrora is ferocious and she always goes off with a bang".
When I ask why he is so hooked on horror films, he pauses for a few seconds.
"My life has been a horror story," he says with a slight stutter. "My birth parents gave me away and I have health problems and bad knees ... And I have Down Syndrome too.
"That is just one of my challenges but I overcome every challenge!"
The 31-year-old is a member of Drag Syndrome, the world's only drag queen troupe whose members were all born with the chromosomal disorder Down Syndrome.
In an art form that thrives on outrage and challenging social conventions, Drag Syndrome is the most contentious troupe of all.
The London-based group has been dancing and lip-synching across stages from Milan to Mexico for almost two years, sticking a size 10 stiletto into the stereotype that adults with learning disabilities are incapable of making "adult" decisions such as having a sex life, getting married or identifying as gay, let alone expressing themselves through cross-dressing.
I have watched them perform in venues ranging from small London gay bars to the sprawling Southbank Centre on the banks of the Thames. The reaction Horrora and four of his colleagues had received a few minutes before our conversation was as enthusiastic as ever.
"It's infectious," beamed the young man next to me in the crowd. "You can tell they are just loving expressing themselves and it makes you so happy to join in."
Jane Adams, another fan in the crowd, has a 3-year-old son with Down Syndrome and said the show was inspiring for people with disabilities and educational for everyone else.
"When you see them up there you see their talent and their personalities, not just their disability," she said. "Believe me, that is unusual for people with Down Syndrome."
The London show was part of the Ru Paul DragCon weekend in January, the biggest drag event ever held in London, and social media is helping to take the group's reputation global. A10-second video posted on the social media site TikTok soon after the DragCon show gained 7.6 million views and 1.2 million likes in two days.
One of New Zealand's most prominent drag queens, Kita Mean, says she is not surprised at the impact of Drag Syndrome, because drag "is an excellent pairing with people with Down Syndrome".
Before becoming a co-owner of Auckland's Caluzzi Cabaret drag venue, Kita Mean dealt closely with people with Down Syndrome during several years working as a community support worker with people with autism.
"They are the happiest people who would always put a smile on my face and drag has the same effect on people – it is a bit silly and a lot of fun," she said.
Not everyone agrees.
Last September, Drag Syndrome's US debut in Grand Rapids, Michigan had to be relocated when a theatre owner banned the show, saying people with Down Syndrome should be "protected like children".
Other conservative US critics deride Drag Syndrome as "a sexually exploitative nightmare that is the equivalent to a turn-of-the-century freak show".
Celebrating Drag Syndrome is "the same as supporting and celebrating Down Syndrome sex work", said one Christian activist.
At a time when personal identity and gender boundaries are being stretched to new lengths, the question is whether society is ready to recognise the right of the disabled to make their own adult decisions.
The scene backstage after the DragCon performance is a mix of relief, triumph - and a little disappointment.
Danny Smith, aka Miss Gaia Callas, is upset that the small unicorn on his headpiece fell off early in the routine, distracting him for the rest of the show.
"I was not perfect," he mutters miserably, still wearing the huge splashes of pink eyeshadow that match the lace and sequins of his dress.
David Simpson, whose stage name is Davina Starr, is ebullient, refusing to change out of his red dress and yellow wig and declaring, "I'm not going home, I want to party."
Several assistants fuss over the five performers but the emotional core of the group is its creative director Daniel Vais.
The gently-spoken Israeli-born choreographer moves from one performer to the next telling them they have been brilliant and that their performance was a big step in their career.
Now 48, Vais was based at an arts centre in Limerick, Ireland in 2007 when he first worked with intellectually disabled people by offering to give a dance class at a daycare centre.
"What I saw was amazing," he says. "They moved like professional dancers. Not technically but it's from the same place of complete freedom and complete connection with the body outside and beyond.
"I saw straight away that these people were natural performers with this powerful urge to give and to express themselves."
Vais was not the first to notice that drive to perform.
In the 1860s, when the British physician John Langdon Down first identified the condition that would take his name, he listed a sense of theatricality and love of dance and drama as one its defining traits, along with characteristic facial features, physical growth delays and learning disabilities that range enormously in their severity.
Down even built a theatre in the asylum he established south-west of London.
"That is why my work is very easy," says Vais. "Their extra chromosome is a gift."
In Ireland, Vais set up a contemporary dance troupe of learning-disabled dancers called The Love Spotters, which he says was initially rejected by festival directors "because people judged them without even seeing them."
"So I said, 'Okay, we will go to Europe.' I took a loan from a bank and I took them twice to London, twice to Germany and it was a huge success because the audiences really got it."
When he moved to London in 2010 Vais set up a similar group called Culture Device that he funded with more bank loans and a lot of "couch-surfing, baby-sitting and working in bars".
Culture Device is still operating and has performed Shakespeare, collaborated with the Royal Ballet and branched into projects such as Radical Beauty, in which people with Down Syndrome were photographed in high-end fashion shoots.
The best-known member of Culture Device is Sarah Gordy, whose many acting credits including the TV series Call the Midwife, have seen her become the first woman with Down Syndrome to be made an MBE.
In 2017 she and Vais were checking out a potential venue in London for Culture Device where there happened to be a drag show.
"We both loved it and I asked Sarah if she would like to try it," says Vais. "She said she would love to and on the spot I said 'We can call it Drag Syndrome.' We were both just giggling then she said, 'That is actually a good title.'"
Vais had never had anything to do with drag but when he asked the other members of Culture Device if they wanted to try it, "They were all super-excited." He explained drag to the performers, who then developed their own personas, costumes and dance styles by doing their own online research.
Not all of the members can read and write but they can all use smartphones, which Vais says have liberated the learning disabled by allowing them to pursue their own interests without relying on parents and carers.
"They know 100 per cent more than me about drag culture and every performer in the world," he said.
One of the first recruits was Baxter, who has performed in Shakespeare and Waiting for Godot and written and directed his own films. As Horrora Shebang, he often wears a black latex jumpsuit with a huge necklace that looks more like a chandelier than a piece of bling. Baxter loves to provoke and his sense of humour occasionally leaves Vais wrong-footed.
When one US radio interviewer asked Baxter what the performers do after a show, he said "Oh, we just get a little cocaine."
"He was joking," says Vais, "but afterwards I had to tell him that he was getting me into trouble because people would think I was giving him drugs. He thought it was hilarious. The truth is that after a show they are more likely to just say 'Can we eat now?' and 'I want to get into my pyjamas'."
While Horrora thrives on being "ferocious" on stage, the flirtatious Davina Starr was inspired by David Simpson's love of 1940s musicals and Hollywood starlets, while Gaia Callas, the creation of 44-year-old Danny Smith, is feminine in a more delicate way.
"Gaia is loving and colourful like a rainbow but very naughty, naughty," says Smith, who lives in a share house in Oxford. He has a serious stammer but the words seem to come more easily when he is talking about Miss Callas.
"I am normally shy but Gaia is not, she's a pussycat but also a hard-core lady," he says. "I have been bullied before but Gaia would never stand for that. She would pour champagne down your neck! She is part of me."
Once the Drag Syndrome members had developed their personas Vais began taking bookings for small venues.
"Like anyone else you have to build a name by performing in s***ty places with five people in the audience and dirty dressing rooms and filthy dance floors," he says. "We haven't had outside support and never played the charity or disability card because I want to get forward on artistic merit, I don't want any concessions or pity. They should be treated like any other professional performers."
Yet logistics and funds can be a challenge. The troupe travels with at least one carer, cannot walk long distances and must eat properly and regularly, "not just crackers and hummus like other up-and-coming artists", says Vais. "They are expensive, like working with haute couture models."
Vais's work has left him outraged at the way the learning-disabled are treated.
"Even in our society they are rejected and bullied but in countries like Ghana and other parts of the world they are locked away and abused more than any other vulnerable group in the world."
Recent advances in pre-natal testing have seen the abortion rate for Down Syndrome pregnancies soar so much that some activists claim people with the condition are becoming "an endangered species".
While accurate figures are unavailable the New Zealand Down Syndrome Association estimates that the rising termination rate here means only about one in 1200 babies are born with the condition here, compared to a global average closer to one in 750.
The Abortion Legislation Act, just passed, sparked fierce opposition from the campaign group Downright Discrimination NZ.
"We treat them like they are half-human or broken or something to be eradicated when they are actually the perfect human beings," Vais says.
Vais himself would be wiped out if American religious activist Anna Bohach had her way. In a posting to her online followers last year she described him as a "gay rights activist" and "drag performer" who exploited and "groomed" Drag Syndrome's innocent members into cross-dressing.
This was news to the performers and their parents.
Pip McKerrow, a retired school teacher whose 35-year-old son Nick performs as "Nikita Gold", laughs at the suggestion that Vais or anybody else pushed her son into cross-dressing.
"From [when he was] the age of about 7, I couldn't keep him out of my wardrobe or my makeup," she told me in the kitchen of their home in the London suburb of Wandsworth.
McKerrow, who has an MBE for her services to Girl Guides, says her son, a part-time barrista, has as much right as anybody to identify as gay and to express his feminine side.
"Why would having a learning disability affect whether someone is gay? Not everyone in Drag Syndrome is gay but some are and frankly that is nobody else's business."
Vais waves away the attacks. "For a start I am not a gay activist and I have never performed in drag.
"I don't even consider myself a disability activist really – I am just an artist, and so are my performers."
Yet even Drag Syndrome supporters admit to having been uncertain about the pioneering group.
At the end of 2018 the troupe got its first international break when Carina Carlsen, a Norwegian cabaret promoter, saw them online and booked them for a gay nightclub in Oslo.
Carlsen, a behavioural science nurse who works with gay people who have learning disabilities, says she initially questioned the ethics of the performance.
"You want to be sure they are doing this of their own volition," she says. "I was nervous but as soon as Horrora Shebang came out in black latex, lip-synching 'I'm so beautiful' by Divine, you just knew she wanted to be out there. The crowd went crazy."
Carlsen has since received emails from the families of people with Down Syndrome saying they found the group inspiring but Vais says he often gets more depressing emails.
"A lot of people with Down Syndrome have contacted me saying, 'Please help, my parents or carers won't let me be gay or have a sex life, can I come and perform with you?' It is heart-breaking. These people have rights but what can I do?"
After Norway came shows in Italy, Sweden and Germany, a disability conference in Mexico and an appearance at Montreal Pride in front of 15,000 people. Celebrity fans have lent their support, with singer Annie Lennox saying she loves the group "because it melts away limiting social norms in the most empowering, liberating, innovative, fun and fabulous kind of way".
Two months after the row in Michigan, David Simpson, in the glittering dress of Davina Starr, grabbed the microphone at the end of a Drag Syndrome performance at London's Southbank Arts Centre to say: "Rebecca, I love you … will you marry me?"
Standing at the back of the audience, his 49-year-old girlfriend, Rebecca Blackwell, who also has Down Syndrome, nodded emphatically, bringing a delighted roar from the crowd.
A few minutes later David's mother Lorraine rolled her eyes about the chances of a wedding.
"I think David actually leans a bit the other way," she said. Rebecca's mother Elisabeth had similar doubts about the orientation of her supposed future son-in-law.
"But Rebecca loves the attention and he is a romantic: this is not the first time he's proposed," Elisabeth said. "We went out for dinner the other week and when I came back from the bathroom the whole restaurant was standing and applauding and David was down on one knee in front of Rebecca. I think she has collected about six rings so far."
David and Rebecca have indeed called off the wedding but Kieran Duffy, another dancer on the stage that night at the Southbank Centre, has no doubts at all about the biggest romantic decision of his life.
In August last year, 26-year-old Duffy married his girlfriend Emmie, 22. They now live in a flat above his parents' home just outside Maidstone, south-east of London. The young couple love dancing and theatre but Kieran is a bit too "blokey" for full-on drag so he wore a Tweety Bird outfit of yellow feathers to perform with Drag Syndrome.
"My wife is my number one person," he said.
Kieran's mother, Tessa Branch, was a UK government adviser on Down Syndrome long before Kieran's birth and has always been determined that he live as full a life as possible.
"A big part of that is the totally normal urge to have adult relationships, whether they be straight, gay, married, single, or whatever," she said. "We have to start out by assuming that Kieran and other adults have the capacity to do anything in life unless there is very clear evidence to the contrary, instead of assuming that we can make all their decisions for them."
A part of that, says Branch, is the right to make even unwise decisions.
"A young man without a learning disability might decide to sit and get drunk every night. That is not a great decision but everyone accepts it is his decision to make. So why can't these performers dress and perform the way they like, which hurts nobody and gives them a lot of joy?"
Today is International Down Syndrome Day.
'We really did fall in love. I didn’t know it could happen again,' said Jo Cartwright, 96.