Liora, my beautiful disabled daughter, has launched me into media stardom this week. I was on Radio 4’s Today Programme, in The Guardian and on BBC South East news, speaking about life under lockdown with Liora.
My main message was a sense of being forgotten. The government announced that all children with an Education and Health Care Plan could have access to school at this time. Liora has an EHCP as she has epilepsy, a chronic kidney condition and autism, but there is no question of her or her classmates going to their special needs school.
I found the government’s message glib. Clearly there is ignorance in the highest echelons about children with complex needs.
Many of the pupils, like Liora, don’t have language, they can’t speak or understand more than simple words such as food, drink, toilet. The majority have saliva issues; they dribble and wipe their mouths on any available person or surface. They don’t know how to wipe their noses, they are not able to wash their hands without help – and often resist it. They don’t know how to social distance, they don’t know anything about the pandemic. Many are also violent to parents and teachers and they are not able to stop biting, punching and kicking. Liora is not violent to others, but she is to herself, banging her own head with her fists when in pain or frustrated. She needs close physical contact at all times to be cared for properly.
These kids often have fragile health, and like Liora are under the care of Great Ormond Street Hospital. Coronavirus could kill them.
So how on earth can parents like Liora’s dad, Rahul, and I, send our precious angel to school - despite the government’s announcement? It’s a blind spot.
The sense of being forgotten, ignored, has personal resonance for me in the context of my Judaism. My childhood memories of seder nights are of the men at the table discussing Jewish matters they knew about from their education, while my mum, aunties, female cousins, sisters and I scurried about in the kitchen. I longed to sit at that table and learn and discuss, but each time I spoke, it was as if the men hadn’t heard me. I’m 55 now, and growing up as a Jewish woman from a United Synagogue background in my era wasn’t fabulous. I felt under the radar, unseen.
My mother got divorced at a time when it wasn’t common. There was a sense that she was expected to fade to the back of the congregation and keep shtum but she’s not like that, she’s a macher, a leader. This didn’t go down very well in some quarters. Our family of mother and three little girls weren’t invited to Shabbat lunches, we felt ignored at cheder, there was no kindness or support. We were ignored.
My Bat Chayil present from the synagogue was a Haggadah, which I still use every year because it’s mine. The label dedication at the front originally said ‘His Bar Mitzvah.’ Someone changed it by hand to ‘Her Bat Mitzvah’, the letters inked over in blue - girls obviously didn’t merit their own printed labels in those days! I didn’t feel special at my Bat Chayil, all the other girls spoke in Hebrew but there was nobody to help me so I had to speak in English. I felt forgotten without a man at the helm in my family. As an adult, it’s completely different, I relish my wonderful Jewish friends, cousins and what I’m learning about my religion, but the memory of the past has been stinging since the start of COVID-19. All this talk about working at home, the issues connected with it. No talk about parents of disabled kids who’ve had to give up their jobs. I had a perfectly lovely contract as a Media Manager at a charity, which I had to leave to earn £67 a week Carers Allowance looking after Liora.
What’s my day like? Some lovely moments with my angel, always, sitting in the park, cuddling each other. But it's not all lovely. This morning I smelled something whiffy when she got me up at 6.30am, as she does seven days a week. Liora is incontinent, so it was time to wash the sheets, same as yesterday. I made her breakfast and fed it to her, she can’t feed herself. She has zero patience with waiting and will bang her head on the wall while I’m madly dashing about getting ready to go for a walk, throwing coffee into a flask and a banana into her bag for my breakfast. Sometimes I get to brush my teeth, sometimes I don’t. Full-time care always means a tussle between the four major priorities of caring for myself - eating, sleeping, washing and my 20 minute exercise routine. Exercise is the one that usually goes by the board - I’m getting fat - then washing. So all this cake-baking, doing Joe Wicks exercises and zoom chats - that’s for parents in the parallel world of what we call ‘mainstream’ children.
Until I moved to Brighton and became part of a community of parents of disabled children, I felt alone and forgotten, on the receiving end of baffled looks from members of my National Childbirth Trust (NCT) group in north London. Or they just didn’t see me. It was a familiar feeling, reminiscent of my childhood experiences in the Jewish community.
Perhaps this is one reason why I’m raising my voice about the government’s lack of knowledge or interest in children at special schools during the pandemic.
Being forgotten is not acceptable.
