There is some language that isn’t socially acceptable anywhere. Is there anything worse than hearing the c-word uttered, loudly, in the middle of John Lewis, though?
Apparently there is. ‘Have you ever been in Build-a-Bear on a Saturday afternoon?’ says Elizabeth Hall, a thoughtful, eloquent and (surprisingly) hilarious mother-of-three who lives in Bedfordshire.
‘Build-A-Bear is probably my biggest challenge. Even the shop workers look weird in there. The men – grown men! – wear shorts and have Teddy Bear backpacks, and that’s before you get to the gross clothing and the naff stuff they sell. I know that all these things are going to set me off, and that when I walk in that I’m going to offend people.’
Swearing at the top of your voice in Build-A-Bear – a challenge for most parents – is not the biggest of her worries either.
‘First I’m likely to say “what a lot of plastic s***”. Then there are all the children. If one is slightly plump, I will say something about that. One of the hardest things is offending parents. I’ve said “what an ugly baby”.
Mother-of-three Elizabeth Hall, 47, from Bedfordshire developed Tourette’s five years ago and admits it upsets her when she offends people with outbursts – which can include racist words. Pictured with her daugher Flo, 8
These poor new parents have got their lovely baby all nicely dressed and gone out, and then been greeted by me insulting them. It’s hard when you know you are saying upsetting things.’
Suffice to say, Elizabeth, 47, hates the Build-A-Bear experience. Ditto the shopping centre experience, the supermarket experience and the coffee shop experience.
Why does she put herself in these places, then? ‘Because I have a beautiful eight-year-old who deserves the same life as everyone else.’
Elizabeth has Tourette Syndrome, a neurological disorder that causes involuntary tics in the form of physical movements, strange noises and utterances. People with Tourette’s cannot control what their bodies do – or what comes out of their mouth.
One of the most distressing things about the condition is that this can be vile. You only have to spend an hour talking to Elizabeth to know that she is a measured, decent, highly-intelligent woman. Yet when she is ‘ticking’ what she says can be foul, obscene or racist.
She says it was particularly upsetting when she called her eight-year-old daughter Flo, seen left, a ‘little s***’. Seen: Her husband Simeon, 50, her son Robert, 17, who also suffers from the condition, and her daughter Eloise, 20.
Most people who have Tourette’s – like her son Robert, who is now 17 – develop the condition in childhood (Robert was seven when they realised something was wrong). Elizabeth’s case is most unusual because she only started showing symptoms around five years ago.
‘I didn’t know that was possible,’ she admits. ‘When the physical tics started, I tried to cover them up. I thought I had a brain tumour, or Parkinsons, or some form of psychosis. It didn’t occur to me I had Tourette’s, even though I was dealing with it every day with Robert. I saw four experts before I accepted it. I didn’t know adults could get it.’
She manages a very typical laugh as she recalls the moment her condition became so bad denial was no longer possible. ‘It was at a parents’ evening, in a big hall, with all the teachers and parents looking on. I literally turned into the sort of character all the worst documentaries focus on. My daughter [Eloise, who is now 20] was saying “shall we leave?”. I went home and had a breakdown and told my husband Simeon. I went to the doctor the next day.’
Elizabeth, seen with her family, called the condition ‘vile’ and says she has called newborn babies ‘ugly’ before in tonight’s Channel 4 documentary
Rather bravely, Elizabeth has allowed the TV cameras into her life. Despite (or perhaps because of) the fact she hates most of the documentaries made about the condition, she said yes to a Channel 4 team following her and her family for six months. The result is an astonishing piece of television.
Some of what they recorded does inspire feelings of horror. There are segments which show this seemingly nice middle-class mum suddenly giving the Nazi salute, or being overtly racist to restaurant staff.
She opens the door to a man who has come to sort out a hornets’ nest in the garden with words he’s unlikely to have been prepared for. ‘Did you know I had Tourette’s?’ she asks him later. ‘The thing that gave it away was when you opened the door and called me a c***,’ he says.
Most upsettingly for Elizabeth herself, she is filmed calling her beloved youngest daughter, eight-year-old Flo, a ‘little s***’.
The context is everything, though. This is a warm and supportive documentary. And an insightful one. As a viewer, you start off being shocked by the offensive content, but by the end you have filtered it out.
‘I’m not the sort of person who wants this attention, but I just felt that all the other shock-horror documentaries I’ve seen have painted a very bleak picture. If you had a child who was newly diagnosed you’d be terrified, watching them. I don’t want to downplay the challenges but I also think it’s important to show how you can still have a life, and be a good parent. It’s not going to kill me.’
Understandably, Elizabeth has reservations about doing this interview. Who wouldn’t? Because of social distancing rules, I Facetime her, and, yes, am greeted to the odd fruity word. It’s not as bad as expected though (Gordon Ramsay is much worse; and his copious use of the f-word is deliberate), and actually conversation is anything but difficult.
Says she wants to raise awareness for young people as her son Robert, 17, suffers from it and she fears he will one day get attacked during an outburst
What’s interesting is how much I laugh. It’s the same with the programme. But it is OK to laugh? ‘Absolutely,’ she says.
‘I give talks in schools and I tell children that it’s absolutely OK to laugh. Yes there is a fine line between laughing with someone and laughing at them, but most people know where that line is.’
Obviously, I know about her condition in advance. Most strangers do not.
‘Some people with Tourette’s do announce the condition, and apologise in advance. I don’t, partly because if I raise the possibility that I am going to tic, it increases the chances of it happening.’
When it does happen, there is no getting away from it. She talks me through a typical encounter in a coffee shop, when she’s hoping her tics will stay away.
‘Generally there will be no sign of them till the barista asks me what I want, then I shout all sort of random things – “Chicken! Monkey! Fridge! N****r! P*ki!”.
‘One of the problems when you are ticking is that you can’t get your normal words out. It would be lovely if you could at least say “a black coffee and a cheese panini please”, but you can’t. And as you are yelling “CHICKEN!”, you can see the barista panicking and thinking “is this a random crazy. Is she going to pull a knife on me?”. I can’t tell you the number of times someone has quickly got me a chicken sandwich in that situation. And I’m vegetarian.’
She is only too aware though that a woman like her is in a better position to be greeted with confused sympathy, rather than overt antagonism.
‘As a frumpy, middle-aged woman shouting something offensive in John Lewis, I am not likely to get myself stabbed. If my son walks into a pub and does the same, he could be putting himself in danger.’
Elizabeth, 47, hates the Build-A-Bear experience. Ditto the shopping centre experience, the supermarket experience and the coffee shop experience as she fears what will happen
She also has the most incredibly supportive family. ‘If I start to tic in Build-A-Bear, and people around see that my husband and my daughter are holding my hand, and giggling along, then it is easier.’
The programme is as much about her family as it is about Elizabeth. Simeon, who is 50 and works in City recruitment, is incredibly laid-back about it. But, as he says, what is the alternative? ‘There was no big conversation about it,’ he says. ‘We just cracked on as normal.’
Much is still misunderstood about why Tourette’s develops, and Elizabeth is candid about how families like hers often feel unsupported. ‘If you find a lump in your breast there is a standard procedure. No such thing exists with Tourette’s. All the different health authorities handle it in different ways, which makes it very hard to give other people advice.’
There is great ignorance, still, even among health professionals. ‘Some medical professionals still deny it exists, or think it is psychosomatic. People who have it can feel very alone, but it’s not an uncommon condition. One in 100 people have it.’
When Robert first started developing tics, it was distressing for all concerned. Videos of him attempting to do schoolwork – and being unable to even hold a pen because of the severity of the physical tics, which included hitting himself in the face – are upsetting. Elizabeth fought to get him help.
She had secured a place at a school which had a great special needs department, when her own tics started. It is understood there is a strong genetic component to Tourette’s, but there is still confusion about whether it can actually develop in adulthood (one theory is that the condition is always there, but has been somehow supressed).
‘I know mine started to come out when I was approaching the menopause, so I suspect there are hormone issues going on there too,’ says Elizabeth. ‘Looking back, as a child I did use to rock backwards and forwards, but my mother would tell me not to. I do wonder if I just suppressed things then.’
As an adult, she was in denial for many months. ‘It started with my mouth twitching. I’d try to cover it, and hold down the muscle. Then it started with my eyes.’
Five years on, though, she has developed an astonishing acceptance. ‘You have to,’ she argues. ‘You have to accept it, learn to live with it make friends with it.’
For her that means living as normal a life as possible – important not just for her own family, but also to show others that Tourette’s is not something to be ashamed of, or hide. There are some situations she will not put herself in, such as travelling by aeroplane, but this is more about not putting herself at risk than saving others some embarrassment.
Going on TV, though, poses very specific problems. Elizabeth feels very strongly that her words shouldn’t be censored. She was on a BBC radio programme 18 months ago and lobbied hard to have her words broadcast.
This documentary was tricky though, because Ofcom rules stipulate that offensive language cannot be broadcast. So there has been a compromise of sorts with Channel 4. For the first 15 minutes of the programme, the most offensive language will be bleeped out; after that (when viewers are totally aware of the content and the context), no bleeps will be applied. She’d still prefer not to be censored, because she says it ‘reinforces that idea that what I’m saying is naughty’.
‘I don’t choose to say these words. My right to be heard should be the same as someone who needs a wheelchair being able to get into Costa.’
It’s hard for those with no experience of Tourette’s to get their head around all this, and Elizabeth is frustrated that much of the media coverage does revolve around the swearing. The blurting out of offensive material is known as ‘coprolalia’, and is, she insists, only a small part of the condition. Only one in ten sufferers actually swear excessively.
‘What bothers me more is the physical side, the sudden movements, the exhaustive nature of it, the fact that some days I do not have the energy to chop carrots or do a grocery shop. And the fear in other people’s faces comes more from the bizarre movements than from the things I say.’
She does get upset when she upsets others though. Her campaigning work takes her into schools. A few weeks ago she was invited into one school where a 13-year-old girl with Tourette’s was keen to return after a period of home-schooling, but wanted Elizabeth to explain the condition to her peers. It proved a challenge.
‘It was an all-girl grammar school with a high percentage of pupils from ethnic backgrounds. When I walked in 80 per cent were wearing the hijab.’ She knew what was coming, and it did. She doesn’t elaborate on exactly what she said, other than it was offensive and racist.
‘Afterwards, I said to one girl “do you think I wanted to say that? Do you think I meant it?” and she was welling up. I was crying too. But the fact is, it isn’t normal for someone to shout out a racist slur in that situation. That person is not racist.’
Perhaps the most difficult thing has been parenting with this condition. She admits she watched the final edit of the film partly with her head in her hands.
‘That segment where I say “you little shit” shocked me, but immediately I kiss her on the head and move on.’
Flo isn’t remotely bothered. ‘My fear is that my Tourette’s will turn nasty to Flo, but as you can see she just carried on eating her lunch. She has grown up with it. She has not sworn once in her life.’
There is another film she made herself, and put on You Tube. She sends it to other parents who struggling to cope with a diagnosis. In it, she and Flo are baking. It’s normal mother and daughter stuff – but with added ingredients. ‘We call it the Chocolate Chip C*** Cookie” film. It shows that Tourette’s doesn’t have to spoil everything. It doesn’t stop you being a good Mum.’
The Mum Who Got Tourette’s is on C4 tonight (Thursday 9th April) at 9pm