One morning when 29 year old Steph Cutler was about to leave her London home to go to work as a fashion designer, she heard a knock at the door.
It was not the postman, as she had thought, but her parents whom she had assumed were having breakfast where they lived in Coventry.
They had come to tell her she was about to go blind.
That was just over 3 years ago when Steph was a rising star in the fashion world, having landed a job with Ted Baker straight after graduating in fashion design from Manchester Metropolitan University.
She was in her mid-20’s, surrounded by very good friends, loving the cut and thrust of London life and the thrill of seeing people wearing clothes she had designed as she walked down the street.
But all that was to come to an abrupt end when her parents told her she had a rare inherited condition, Leber’s Optic Neuropathy, which meant she was going to lose her vision.
Sure enough, within six months she was unable to distinguish between tins of baked beans and pineapple chunks, or packets of paracetamol and laxatives.
She found herself doing things like putting intensive lip balm into her eye believing it to be her prescribed eye cream.
Unable to continue work as a fashion designer, she had to leave London, return to her parents’ house in Coventry and almost start all over again.
"I understood why people question their identity when something like this happens, but that genuinely wasn’t my reaction." says Steph, who is petite, pretty and still dresses as though she moves in fashion circles.
"I saw it as a practical problem. I wanted to know how I was going to adapt to it. I thought there had to be a way".
"I was told I had about three months of vision left. When I took pictures when I went travelling I did wonder if I was still going to be able to see them when I got home."
"But generally, I was fine while everybody else was upset. I thought, I can’t get worried about something when I don’t know what it’s going to be like. I'll have to wait and see what happens".
What happened was that Steph turned her life around. She is now a business woman who was recently nominated for the handbag.com and Barclays Bank Business Plan Awards. She runs her own company, Open Eyed, which advises organisations in all sectors on how to comply with Disability Discrimination Act.
"It’s a one-stop shop," she says. "Whether a company wants to know about accessibility or clear signage or British sign language interpreters, I can supply what they need."
"Disabled people have an annual spending power of around £80 million per year in the UK so there is a strong business case as well as a legal case for complying with the Act."
The speed with which Steph has adjusted to her condition is quite astonishing.
"It’s because I had help", says Steph, speaking appreciatively of her loyal friends, close family and various organisations that have given her training and advice.
"I couldn’t have managed without it. If I need help then I’ll ask. I can't be too stubborn about it."
Steph is probably a very easy person to help because she does far more than her share of the deal, which makes helping her a very rewarding experience. And she is good fun. She has a mobile phone which talks her text messages to her.
"I call it Stephen because it sounds like Stephen Hawkins", she says. "I have to remember to take Stephen wherever I go. The phone isn’t working properly at the moment - Stephen and I have fallen out!"
Steph, who has one sister, was born in 1976 in Shropshire. Her mother is a care assistant and her father, now a self employed leadership consultant, used to be in the RAF. She learnt to be adaptable early on because, as a result of her father's work, the family moved around a lot, resulting in Steph going to ten different schools.
"Every couple of years I was the new girl," says Steph. "I had to be able to adapt and make friends. I think that’s quite a good skill to have. I really enjoyed school. I did OK and I did have a lot of friends."
Doubtless that adaptability is what has stood her in good stead in coming to terms with loss of her sight. Steph knew she was interested in fashion from the age of 14.
"I was always very arty and creative," she says, "Art was my favourite subject so I knew that was what I wanted to do".
After school Steph went to Coventry University to do a one year foundation course in art before going on to study fashion design in Manchester. Her coup, almost seven years ago, was being taken on by Ted Baker after she graduated. Steph moved to London to work as a design assistant to the designer clothes store.
"I got a buzz out of it" she says "I was working on woman’s casual wear. It's always nice when you see people in the street wearing what you have designed, especially at first – though sometimes you’re sick of the sight of it by that time. You've made so many changes to it by the time it’s gone into production".
Then Steph made an unusual career move. She left Ted Baker to work for a company that supplied Marks and Spencer. "It was quite a bold move to leave Ted Baker because it was such a good job. Once people get there they tend to stay" says Steph.
"But I wanted to progress my career. Marks and Spencer was a different market: a different kind of garment and had different price points. It was a big challenge but it was equally good."
It was while she was designing for Marks and Spencer that she went on holiday to New Zealand. She stopped off at an optical illusion room in Puzzle World where there was a white wall. The idea was that if you closed one eye, the lines were vertical and if you closed the other the lines changed. Steph closed her eye and sure enough the lines were vertical. Then she closed her other eye and could see nothing at all. "That’s really clever", she thought.
Then she got back into the car and tried shutting her right eye and realised that her loss of vision was not an optical illusion. Steph was not unduly bothered about this. She just thought "Oh" and decided to go and see an optician when she got home, but it took her several weeks to get round to it.
"I closed my left eye and read from the big A to the tiny bottom row with no problem".
"I went to repeat the exercise with the opposite eye and I couldn’t see the chart, let alone the big A."
"The optician asked me to go to the eye hospital as a matter of urgency but still no real bells rang." Nobody at the eye hospital seemed to know what was wrong and said she would have to see a consultant. Still not unduly bothered, Steph nonchalantly rang her parents and told them what had happened. Little did she know that this was a call her parents had always dreaded. They said little on the phone but were down in London to break the news before she had even had her breakfast the following day.
Leber’s Optic Neuropathy is an inherited condition which causes loss of central vision. It usually affects men, most commonly in the late twenties or early thirties, but the symptoms can happen at any age, to men or women. Usually Leber’s affects one eye first, so central vision is lost in that eye over a period of a few weeks. One or two months later, the second eye is affected in the same way. After a few more weeks, the eye sight stops getting worse. Steph's parents knew all that because some relatives suffered from Leber's. However, Steph did not know all the relatives, nor had she heard of the condition. Amazingly, she remained cool even after such devastating news.
"I didn’t know what losing central vision in both eyes would be like" says Steph and thereby managed not to worry about it in advance.
Now she knows what it is like, but says she is grateful every day for the sight she still has. Her peripheral vision means she does not tend to knock into things. She can tell if someone is walking towards her, even if she cannot tell who it is. But she cannot read. She knows from previous experience how to pour milk into a cup of tea but she cannot really see what she is doing. And that was enough to mean she had to give up her job as a fashion designer.
"It’s a very visual industry obviously," she says. "It’s a very competitive industry. Even with sight it's hard to cope."
Steph knew she would have to re-learn and re-train, but the difficulty was that all the ways in which she had studied in the past were closed to her as she could not read books and could not use a computer. She decided to live with her parents and study at the Queen Alexander College in Harborne, Birmingham for people with visual impairments. The college was due to close for the summer at the time, but Steph insisted she could not wait and they kept the college open for her – another example of Steph being someone people like to help.
"That was what really turned my life around,"she says. "I couldn’t do anything without that course and there wasn’t a Plan B".
"They knew that I would work very hard and do all the homework." She was given tapes and, through that, learnt how to use a computer working with F commands rather than a mouse. She had a screen reader which told her what she was typing and by the end of the summer considered herself to be employable again.
"I was only going to learn how to live with Leber's by going out and living with it," she says. "Sitting around at mum and dad's house was not going to help."
Steph, who had always found it easy to get jobs, then experienced filling in hundreds of application forms and not even getting an interview. She did get one job but it only lasted for four days because the computer was not suitable. "I thought 'bollocks to you'. I’ve worked so bloody hard. If you’re not going to give me the chance to show what I can do, then you’re the ones that are losing out," she says.
And it was that experience that led her to set up a business enabling companies to comply with the Disability Discrimination Act. Steph had to do an enormous amount of research to gain the knowledge she needed to act in a consultancy capacity, but with her talking computer that was all possible.
"I didn’t want to launch it until I was confident I really knew my stuff", she says. Several months before, she had been using the tube in London and asked an Underground employee for help because she could not read the signs. It has not been unusual for people to be rude to Steph and treat her as if she is stupid. "But this employee helped me in a very appropriate way", Steph says. "He didn’t patronise me". "I thought he must have had some training so when I was thinking about my business, that experience came back to me."
Training staff to work with people with disabilities is a large part of what her company does. "You can't expect other people to know what it’s like to have a disability. People don’t know how to react."
"I’m very non-judgemental in my approach. If people haven’t got a clue, then we’ll talk about it. That’s my style".
"It’s the attitudinal barriers that are much more upsetting than the physical ones." Steph certainly seems to have no attitudinal barriers within herself.
With her business underway and her new skills under her belt, Steph is greatly looking forward to the rest of 2006. "It’s going to be a brilliant year. I’m overdue a good one," she says with a smile.
"I’ve launched my company and I can’t wait to crack on. I’m ready to get my own pace again".
"I can't wait now. I just want to feel normal again. I shouldn’t use that word but you know what I mean." Steph Cutler’s website is at www.openeyed.co.uk
Birmingham Post Interview.pdf [opens in new window]
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