Deaf and blind, but good at seeing red
Life's not easy for any single mother. But Julia Gates has seen off problems that would crush many parents: dual sensory impairment ... and Social Services. Fiona Malcolm met her
Monday 12 August 1996
Guiding a child away from potential dangers, picking through their clutter and proffering refreshment to a guest would be tasks scarcely worth describing, were Julia not deaf and blind. She cannot see Ayla's blonde curls and clear blue eyes, or hear her incessant chatter.
As far as Julia knows, she was the first deaf and blind single mother in the country. Her fight with Social Services to be allowed to keep Ayla, the first of her two children, is the subject of an intensely moving documentary, "Julia's Daughter", made by Marilyn Gaunt, to be screened tomorrow night as part of the True Stories series.
Marilyn met Julia Gates and began to record her life when she was three months pregnant. Events over the past 18 months have wrought dramatic changes in Julia's lifestyle and status. You will see snatches of her at her most vulnerable (you will need a heart of stone not to find these moments profoundly distressing), and at her most bloody-minded, qualities irresistible to Marilyn Gaunt. "She is not a saint, and she certainly isn't resigned to her disabilities," she says of Julia. "She builds mountains in order to climb them. Sometimes you love her, and sometimes you are infuriated by her. She is a doer, and she has unlimited courage."
The film shows a sliver of a life that has been a battle zone, inwardly against her increasing disabilities, and outwardly with every form of authority with which she has come into contact. Now 34, Julia spent her childhood, from the age of four, at boarding schools for the blind. In those days, she says, there weren't the facilities in her native Cambridgeshire, to look after and to educate her.
"My problems were picked up when I was about two," she told me, responding to my question rapidly spelled out for her on her hand by Lisa Bloodworth, her close friend and manual interpreter. "But I didn't realise I was becoming progressively blind until I was six or seven, when I was still able to see some things. The hearing loss started when I was a teenager, but I was able to manage until I was about 20, when there was a big deterioration. I still feel bitter about my deafness. A hearing blind person has a lot more freedom than I have."
She has vivid memories of colours. "They're still very important, and I get very frustrated if I don't get a detailed description of the colour of something. I bought a new T-shirt recently, which I was told was brown and cream, but Lisa says it's more bronze than brown. That makes all the difference. I get a better picture of what things are like if I can visualise the colours exactly."
Her parents, still part of her life, had no wish to be involved in the making of the film. "They do care, but they're not very capable of dealing with me, so we keep a distance between us now. When I most needed them just to open their arms as loving parents and accept me and the things I was trying to achieve, I got nothing but criticism. My mum has poor sight, but no hearing loss. I inherited my condition from her, but she didn't know until 10 years ago that we share the same problem because it varies so much from one person to another."
Julia's first major battle was for a measure of independence from a family who wanted to protect her from the world. "By the age of 21 I had lost my hearing as well as my sight, and I was living at home. I felt it was time I stood on my own two feet, but my mother said I wasn't capable of doing it. I felt smothered. I had no friends, never went out, and was never encouraged to fend for myself.
"I was offered a job and a sheltered flat in Peterborough through the Deaf Blind League. Once I was given the chance to prove that I could live on my own with a bit of support, things began to look up, and I'll always be grateful to them for giving me a start."
She has the league to thank, also, for her friendship with Lisa, who interprets with absolute integrity, character for character, word for word. I slipped up by addressing her, just once, as Julie. "Julia, if you don't mind," she came back, quick as a flash. Her pretty face, mouth turned up at the corners, creases at one moment with wry amusement, the next with anticipation and the need to know as quickly as possible, exactly what is being said. The loneliness, anger and frustration caused by being unable to communicate were much more intense in the years before she had Ayla, an unplanned baby, child of a married man. And she is settled now, with her partner, John, the father of baby Ricky.
It was a breakdown in communication, she insists, which cost her two guide dogs. That she is a dog-lover is apparent only minutes into the film. It is also obvious that her life could be transformed by a guide dog. It is a touchy subject. She holds the same range of opinions on the Guide Dogs for the Blind Association as on social workers, the "interfering old bags who parked 24-hour care on me" after Ayla was born.
"I had my first guide dog while I was living in sheltered housing. She was a bit over-exuberant and did really silly things when they came to check up on me. They told me I wasn't being careful enough and there's no doubt my poor hearing didn't help because I couldn't always grasp exactly what they were saying to me, but instead of trying to find a solution, they took her off me." For the loss of the second dog, she accepts some responsibility. "I was living alone in Leeds and in a complete mess. Ayla's father promised me that if I moved up there I would be able to see more of him, and I went gladly, with such high hopes, but it turned into a living nightmare. I was totally alone except for the guide dog, and I admit I took out my frustration on him. I didn't get any support, they just whipped the dog away. I lost my home, the man I loved, and the dog I loved even more. The association do a lot of work, but they were very cruel to me."
She returned to Peterborough, homeless and three months pregnant. And what of Ayla's father, Marshall? Before she has time to answer, Lisa takes her hand again and continues signing, whereupon Julia leaps into the air, arms outstretched, whooping with Joy. Ayla chuckles, delighted at the outburst, and looks from Lisa to me with one of those wonderful "get my mum!" grins which children specialise in. It turns out that a letter has arrived at the Deaf Blind League that morning from the Child Support Agency, confirming that Marshall is the father. He has been banged to rights a month short of the child's third birthday.
"He completely denied he was the father," says Julia, "yet he knew very well that he was, and admitted it in a confidential phone call to someone at the same time he was denying it openly. There haven't been many men in my life, yet the way he carried on, I was holding court to half the north of England. I was so angry with him. The CSA has been involved from the start, and eventually he had to agree to the blood tests. Apparently, his wife booted him out when she found out about me, and it turned out I wasn't the first. He may have to pay maintenance now, and it means that John can go ahead and adopt Ayla."
Pity any adversary of Julia Gates. A stream of housekeepers passed through the house after Ayla's birth. We don't actually see them crying or wringing their hands in despair, but she managed to despatch them, one after the other, with chilling speed. Our sympathies must go to the social workers who obviously had her well being and Ayla's safety in mind, but Julia has not one good word to say for them. "I was under a huge strain after she was born, but it wasn't because I was a deaf, blind single mother. It was because they wouldn't leave me alone to get on with it. I lost my milk when she was eight months old. As soon as they started to back off, things improved."
Tomorrow, watch for the few seconds which show Julia kneeling on the floor of the bedroom, carefully folding a terry-towelling nappy, placing a liner in the centre of it and manoeuvring it into position under Ayla's wriggling bottom. It told me more about her than any other moment. Most sighted parents no longer opt for buckets, sterilising solution, safety- pins, washing, drying, and plastic pants, because the alternative is the ecologically disastrous plastic-covered disposable. She waves the question away with almost total indifference. "It was something I chose to do so," she says. She did switch, but not to make her life easier. "She got a terrible nappy rash," she says, "and it got better with disposables."
Having proved to the world she is as good a mother as the next woman by agreeing to do the film, her next task is to set about raising the pounds 8,000 she needs to buy the computer equipment that would radically improve her powers of communication. "I've managed to raise a bit, but both John and I are on income support, so there's not much hope of doing it on our own."
She has already made one journey on the back of a tandem from John O'Groats to Land's End (wouldn't you know it!), raising money for the deaf-blind telephone project. She uses Type Talk to communicate with an old friend who lives in Orpington, Kent, but if she could buy a decent Braille display and a good laptop to run with it, she could converse with people without a signer. "It would also give me access to the Internet, which would open up a whole new dimension." She and John would give anything for the chance to do another fund-raising tandem journey, with good back-up along the way.
Julia still feels sometimes that the world is working against her, but reckons she has mellowed now that she has John by her side and a family who need her as much as she needs them. Ayla talks and plays like any three-year-old, and is a great deal more sociable than many. She knows the signs for "yes" and "no", so that she can give Julia answers to direct questions and, even as a baby, learnt to touch her mother to get attention.
In an ideal world, Julia says, she would have liked to become a vet, and she holds out hope that she may one day be able to train as an aromatherapist. She would also love another chance to prove that she is worthy of a guide dog. She is subdued and reticent on the subject as on no other. Since she made her point by letting a film crew monitor some of the most intimate and painful moments of her life, it would be nice to think that tomorrow's programme might dramatically improve it. Eight thousand pounds is an unimaginably large sum if you live on income support - but it would be practically invisible to a major computer manufacturer.
True Stories: Julia's Daughter is on Channel 4 tomorrow at 9pm.
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