‘When I’m too ill to go to school, I just send my robot instead’
Jade Gadd, 17, tells Tabi Jackson Gee how a device will help her achieve her A-levels
It took Jade Gadd 11 hours to finish her first English GCSE. At home with an invigilator and her parents on standby, she spent most of the scheduled 45-minute breaks having stress-induced seizures, and at one point amnesia stole her memory. She didn’t just forget what she was writing – she forgot who she was.
Jade is 17 and suffers from hypermobile Ehlers-danlos syndrome (EDS), a rare hereditary condition that causes different systems in the body to shut down with no warning.
She can lose her speech, her sight, her hearing or her ability to move, in episodes that last anywhere between a split second and three months. If she ever “stops concentrating” on holding her body together, her bones dislocate. Sometimes that means her little finger, other times her back.
Jade, who also has Asperger’s syndrome, was diagnosed with EDS when she was 14, but had shown symptoms since birth. Before her EDS revealed itself fully during puberty, Jade hoped to be an athlete, and was a martial arts instructor at her family’s Wabi-sabi Academy in Durham.
Despite her debilitating condition, Jade, with the help of an extended network of family, friends and tutors, has three GCSES. Last year, she achieved a C in foundation maths, and this year a 6 in English literature and a 9 in English language. It is impossible to overstate this achievement: Jade has spent much of the last year unable to even get out of bed. This, in turn, has led to her also suffering from anxiety and depression.
And yet, Jade is incredibly cheerful when I speak to her on the phone. “Everyone makes such a tremendous effort to try to make things possible for me,” she says matter-of-factly of her 11-hour exam. “So it would have been selfish for me to give up.”
In the UK, funding for home education finishes after GCSE, so in order to do her A-levels, Jade would have to physically go into school for sixth form. For someone who often needs three ambulance crews just to leave the house, this seemed impossible. Until a few months ago, that is, when Bee arrived. Bee is Jade’s telepresent robot, so called after the plucky problem-solving character in Robin Hobb’s novels. Small, light and toylike, Bee can be carried in a rucksack and then placed on Jade’s empty desk, to act as her eyes, ears and voice while she listens in from home.
When Jade returns to her school, Durham Johnston, next Wednesday, she will watch lessons live via an app on her ipad, and – here’s what sets Bee’s functionality apart from apps such as Skype or Facetime – she will be able to move the robot’s head 360 degrees to see her classmates. If she wants to contribute, she can turn on a light remotely to alert the teacher and then communicate through its speaker.
“Bee lets me do everything I didn’t think I’d ever be able to do,” says Jade. “It allows me to be there, and hear what’s being said, and be part of the class.” It even has a “whispering mode” that enables her to speak to a classmate, out of the teacher’s earshot.
Bee – officially called an AV1 – is manufactured in Norway by a company called No Isolation, and more than 200 are already in use in Scandinavian classrooms. Bee is the first to go into operation in the UK, and its £2,200 cost (plus a monthly fee) will be crowdfunded by Jade Aid, which was set up by Jade’s friends and family to raise money for things that make living with her condition easier.
It is hoped that the AV1 will revolutionise the school day for an estimated 35,000 children in the UK whose conditions prevent them from attending school regularly. “I have insomnia and it can take hours for me to get up. By the time I get there, I’m so exhausted I won’t be able to take anything in,” she explains. “So the hope is – don’t tell the teachers this – I’ll be able to do that class in my pyjamas.”
From a social aspect, the AVI will be invaluable: “I want to socialise and I want interaction but I don’t want people to see me stuck in a nappy, when my skin’s dry, my eyes are puffy and my hair’s not done because I can’t shower. Bee makes it exciting again, because I’m no longer scared of what I’m not going to be able to do. I’m excited about what I’m going to learn.”
If all goes well, Jade plans to sit A-levels in maths, further maths and physics. She then hopes to study physics at Durham University, with a view to a career in politics. Her main aim in life is, she says, is to “make a positive difference in the world”. Already, she has been canvassing Durham MPS to lobby for a local Member of Youth Parliament.
Before Bee’s arrival, Jade’s parents went to great efforts to show their daughter the outside world. They filled their smartphones with pictures, used Facetime wherever they went, and on one occasion strapped a Gopro to the family dog. But nothing has been as instantly transformative as the AV1.
“Bee makes people feel comfortable, so they come over and speak to me more than they would before,” says Jade. The robot has even been able to visit friend’s houses. “Several times, she’s come back with big red lipstick marks all over her. Now, even if I can’t go somewhere, I know that Bee can do that for me.”