Jewish Blind and Disabled: Home Sweet Home
Brigit Grant is the Jewish News Supplements Editor
The tenants living in Jewish Blind & Disabled properties couldn’t be more different, but the way they love their apartments is exactly the same. Brigit Grant reports…
Let me tell you about JoJo Miller.
Petite with freckles and a constant smile, she has the sort of lyrical giggle that generates optimism. “People tell me it’s an infectious laugh,” she says settling back on a spread of cushions covering her sofa.
Embellished cushions are JoJo’s thing, along with colourful throws, and soft linen curtains that let in the sun, which suit this woman who emanates light. “I’m a Jewish hippy and love everything Moroccan,” she tells me and has the chubby Buddha, strands of beads and hammered candelabra on the mantelpiece to prove it.
There is also a keyboard in the corner on which JoJo, a gifted pianist who studied at the Purcell School – a specialist music school – practices everything from jazz to show tunes and pop. “I’ve had a residency on Saturday night at Ciao Bella in Holborn for the past 10 years,” she says and attributes her talent to her grandfather, composer Jules Rubin.
In fact, JoJo’s entire family are musically-gifted or naturals on stage and there are photos of them everywhere among the knick-knacks that tell the story of her life and make her apartment in Frances & Dick James Court feel very much like home. And that’s because it is her home and has felt that way since she walked through the door eight years ago.
“It’s a wonderful place to be because you live completely independently, but at the same time you can always knock on someone’s door if you feel lonely or down,” she says. “You naturally bond with people and become a little family. One also has the reassurance of a house manager calling every morning and evening to check I’m ok and that’s nice.” Cue the infectious giggle.
When JoJo arrived at the Jewish Blind & Disabled property, she had just lost a job that she loved – teaching small children – because she couldn’t concentrate, do things at speed or multitask.
“At the time I thought there is something a bit wrong with me,” she says and there was, as JoJo has Huntington’s disease, a hereditary and progressive brain disorder that robbed her of her father, Robin, who died on Remembrance Sunday last year. Robin’s two brothers also died from the disease and JoJo was diagnosed with it in 2007.
“I didn’t talk about it much with my father, but when I decided to get tested, he told me not to,” she reveals, assuming he was fearful of the results. “But I had to know as I had the early symptoms he had experienced.” Witnessing her father’s decline was, as JoJo puts it, “like looking in a mirror”.
“In the later stages you have involuntary movement and then the physical symptoms can make walking, speech and swallowing more difficult. I just thought… it’s a terrible thing to deal with – the fact that I will deteriorate like dad, but on the upside it’s so far away because the disease is progressing very slowly.”
The absence of physical signs are indeed a cause for celebration along with the thumbs up from her consultant. Best of all it hasn’t affected her playing the piano – “I still do it brilliantly,” she chuckles and regularly provides entertainment in her own and other Jewish Blind & Disabled buildings.
“I do occasionally fall over, every six months or so, but the joy of living here is that if anything happens, I am not alone. In terms of being looked after, I don’t have to worry because if I get to the stage where I can’t look after myself, I can get an independent care package and still be here. It’s very reassuring for my mum, too, who was worried about me.”
JoJo’s mother, Jackie, doesn’t worry any more – at least not about her daughter’s day-to-day life as she is living independently in the way she always wanted to and has embraced her Judaism, never missing a communal Shabbat or seder.
“I’m still waiting for Mr Right, although I have found a soulmate in my neighbour a couple of doors away,” admits JoJo. “But if someone came along I would have to tell them the truth about my illness as I have seen very happy relationships work for couples at the Huntington’s support group I go to. I’m sure if the person loves me they won’t be thrown by my condition.”
Rachel Morgan, 27, has a similar hope and she also harbours the dream of becoming a doctor. Originally she wanted to be a vet, but after spending so much time in hospital, she believes she can bring experience and understanding to the job. Rachel also lives at Frances & Dick James Court and, much like JoJo, her apartment reveals her creativity and passion for design. The pinkish hue of her cropped hair is also a clue, but within moments she is showing me a range of exquisite gift cards she makes by hand, along with some beautiful silver charms and necklaces.
Rachel has been a tenant for four years and although she wasn’t desperate to move out of her parents’ home in Muswelll Hill, she is happy she was able to do it. “I really wanted to live alone, but wasn’t sure how,” she says. “I just thought there would be problems.”
Rachel has Ehlers-Danlos syndrome, a connected tissue disorder that affects all her joints and causes chronic pain. The hypermobility of Rachel’s body, which she has had since childhood, means that within seconds and with no warning her joints can dislocate, with the results depending on where this occurs. A fall in Brent Cross when she overexerted herself while walking with a crutch led to her being paralysed from the neck down for five months.
“I thought I was fine when it happened and got back to my apartment, but I had loosened my neck joints and jogged my spinal chord and was back in hospital again.” Suffering with Ehlers-Danlos has caused several other conditions, notably heamophilia, which Rachel has to treat with up to 30 tablets a day. “I also have at least three hospital appointments a day, but in recent months I have been having ketamine infusions and it’s steadily making a big difference to the way I feel,” she says.
Sitting cross-legged on a chair and chatting, it’s hard to believe that this animated woman is in any pain at all and she says that she avoids talking about it with other tenants as much as she can. As the youngest in the building, she feels her ability to socialise with her older neighbours is her strength and, after extended stays in hospital, she can’t wait to get back and see them. “I have friends here who are closer in age to my mum, but it works,” Rachel says and they would doubtless agree because she is an inspiration.
Without hesitating, she has leapt out of planes and sky-dived twice, raising more than £7,000 for Jewish Blind & Disabled and other charities. When we meet, she is psyching herself up for the Maccabi Fun Run, which she will complete in her manual wheelchair, and she is also planning to host a Marie Curie Tea Party.
“I lost a very, very close friend to cancer last year and I plan to do it in her name,” says Rachel. With her plan to eventually become a doctor driving her on, she has decided to come off all her medication. “They impact on my memory and stop me from being a better person,” she explains. “It will take a long time and may even set me back, but I am in a good place and I have to take a leap of faith.”
Daphne and Malcolm Cohen also took a leap of faith when they moved into Cecil Rosen Court, Jewish Blind & Disabled’s newest development in Bushey, albeit of a geographical kind. The couple, both in their seventies were living in Darlington, where Malcolm’s deteriorating sight was becoming more problematic. They were also in desperate need of Yiddishkeit when they came to visit Daphne’s late brother, David, who was living in a different Jewish Blind & Disabled home.
“The moment we arrived, we knew this was the right place for us,” says Daphne, who was in the middle of a Wednesday morning art class in the communal lounge. “We’d also lived in Spain where I ran an ice-cream parlour and tea shop, but in the end we just wanted to be back in England and we couldn’t be happier.”
The art class, where she is currently decorating Venetian masks, is just one of the weekly highlights at Cecil Rosen Court. “Come and meet Malcolm and I’ll take you through my week,” she says putting down her paintbrush.
On the way through to the Cohens’ apartment, I meet Shirley who is making herrings for Daphne to sample later and together they are responsible for arranging the regular film nights.
“It’s very social if you want it to be, but not if you don’t,” Daphne explains as she opens the door to her very stylishly-furnished apartment. Malcolm, from Stoke Newington, and Daphne, from Clapton, met through a Jewish introduction agency some years after prematurely losing their respective spouses. He was a taxi driver and she had set up shop in Spain but, in time, Malcolm joined her there.
As they share their history, it is clear they have suffered numerous personal tragedies, the death of Daphne’s daughter being the most significant. “But I am a glass half full person,” she says and Malcolm notes there have been many good times, too. “We’re off to Russia in a few weeks,” he adds. Their apartment is a testament to their good taste and Daphne’s love of craft, which is exemplified by a collection of glittering goose eggs that she made, which could be the work of Fabergé.
She no longer makes them, preferring to dip in to what’s on offer in-house, be it kalooki on a Monday, quiz night on Tuesday, art on Thursday and the once-a-month Friday Kiddush laid on by Bushey’s Jewish Ladies Guild. They also have a married grandson to visit in Darlington and it’s a special relationship as they raised him after his mother died. “We weren’t sure we would ever be able to come back to London and this was more than we could have hoped for, “says Malcolm surveying the airy living room. “It feels like home.”
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