The first five months: emergency support

Help was on hand as soon as Gloria returned home, from a variety of sources: relatives and friends; a home help supplied by the local authority social services; staff from the local rehabilitation centre; the HT from the local hospital; and the local Social Worker for the Deaf(SWD).

Support from family and friends

Gloria's sister and various friends came in to look after her and Chris for the first two weeks after she returned home. Then her mother arrived from Jamaica and became her main source of support for cooking meals and looking after the house. Nevertheless, her other relatives and friends continued to provide considerable support, for example, by looking after Chris in their homes at weekends. At this early stage Gloria found it very difficult to lipread anyone, and people often had to write down much of what they wanted to say for her to read.

Support from a home help

Soon after she returned home the local authority social services sent her a home help. She came once a week to help her with her domestic chores and in the early stages of her recovery did much of her shopping. The home help continued coming once a week for the next 18 months.

Support from the rehabilitation centre

Each week Gloria was taken by ambulance to the rehabilitation centre for exercises to improve her mobility and a chance to discuss her psychological problems. For Gloria's double loss of mobility and hearing had completely undermined her confidence even to attempt to go out of the house to make contact with people. Something apparently simple like crossing the road outside her house was initially a terrifying experience for her because she moved so slowly and unsteadily and could not hear cars coming.

However, very gradually she was helped to recover her self-confidence by considering step by step what she needed to do to undertake basic activities such as going out to the shops. In less than five months she had achieved her objective of starting to take her son to and from his new primary school.

Support from the HT

Soon after Gloria returned home, the HT came to visit her and, while she had difficulty walking, continued to visit her at home once a week. Gloria found her a vital source of support in coping with her deafness. She gave Gloria her first basic lessons in lipreading and was someone to talk to about day-to-day problems connected with her deafness. When the HT could not offer advice and reassurance herself, she could usually refer Gloria to another appropriate source of help.

Support from the Social Worker for the Deaf(SWD)

From the start Gloria had serious difficulties in communicating with Chris. At four and a half he could not write down what he wanted, and she could not yet lipread him. Frequently he could not make her understand what he wanted and became very upset, which in turn made her upset.

When Gloria described this problem to the HT she immediately contacted the SWD, who came to see her. He explained that if Chris began to show serious signs of emotional disturbance he could work with him separately. However, in practice this did not prove necessary. Chris worked out his own vocabulary of mime and gesture to indicate his basic needs, and gradually Gloria learnt to lipread him better than she could lipread anyone else, so that she almost always knew what he wanted.

Although she no longer needed help with Chris, the SWD provided practical support in other ways. He helped her to secure Disability Living Allowance until she could walk unaided and Incapacity Benefit after her first six months away from work when her statutory sick pay dropped to half her previous level of pay. He arranged for Gloria to have a textphone; flashing lights and a vibrator under her pillow that were activated by the door bell; a smoke alarm; and a free travel permit.

Stage 2: adjusting to her deafness and getting back to normal at home

Support from the LINK Centre in Eastbourne

After about five months at home Gloria could walk slowly unaided and go out of the house. At this stage she followed her HT's advice and went on a residential rehabilitation course at the LINK Centre, accompanied by her sister and Chris.

Gloria felt that all three of them gained a great deal from this course:

• for the first time she had the chance to get to know other people who were partially deaf and to learn how they coped with their problems. She found this invaluable, even though she was the only person there who was completely deaf;

• her sister picked up several ideas from the course trainers about how she could help Gloria;

• Chris met the young daughter of a deaf member of staff at the centre. She told him about her life with her deaf mother, and other people on the course told him about their hearing children. Chris began to realise that he was not the only child in the world with a mother who could not hear;

• Gloria gained useful information about organisations offering services to deaf people

By the end of the course Gloria felt much more confident about coming to terms with her deafness: "If they can do it, I can do it".

Support from lipreading classes

Soon after her return from the LINK Centre, she started to go to lipreading classes recommended by the HT. As at the LINK Centre, she was the only person in the class who was completely deaf, and because of her visual impairment she could only see to lipread over a short distance.

However, the lipreading teacher was sensitive to her needs. She sat her at the front of the class and repeated to her anything said by other members of the class who were beyond her range of vision. In this way Gloria was able to gain the maximum benefit from the classes, although she found the pressure of concentrating for two hours at a stretch very tiring. Nevertheless, she welcomed the chance to have regular social contact with other people who had a hearing problem.

Accepting medical retirement

Her employer, Hammersmith Social Services, was keen for Gloria to return to her old job and was prepared to keep it open for a year. The main obstacle to her returning to her job was her lack of mobility, not her deafness. The local authority would provide whatever equipment she needed to reduce the effects of her deafness; but normal mobility was still a requirement.

Although after the first few months Gloria could walk unaided, she could move only very slowly and unsteadily. Her own GP advised that it would be too much for her to return to work as administration manager for the Hammersmith adoption and fostering unit; this assessment was confirmed by an examination carried out by the local authority's own doctor.

It was agreed, therefore, that Gloria should be granted medical retirement; so, 11 months after she had stopped work, she was persuaded to accept a lump sum payment and a monthly pension equivalent to less than half her previous salary.

In retrospect she recognised that this decision had an important bearing on her future employment. She could not now return to work for a local authority without giving up the pension, and it seemed unlikely that she could get a job at the same grade after a long break in service; but Gloria knew that she could not manage financially in a job at a lower grade without the pension. So she had to look for administrative jobs outside the local authority sector. Yet, in many ways she felt ready for a change.

Taking charge of her domestic life

Over the next few months Gloria slowly began to take charge of the domestic tasks that other people had been doing for her until, 18 months after her return home, she reached a milestone in her personal recovery: she assumed full responsibility for running the house, doing the shopping and looking after Chris, and the home help stopped coming.

Stage 3: recovering her hearing and learning with a group of hearing students

The impact of having a cochlear implant

About this time Gloria started to go to the Middlesex Hospital for intensive physical and psychological tests of her suitability to have a cochlear implant. When she was first diagnosed as having meningitis, she had been told that if her hearing did not return she should be considered for a cochlear implant, and her local health authority would fund it. So a year later, when the problems with her balance and vision had stabilised, she went to the Middlesex Hospital for preliminary tests of her suitability. These were positive; but due to staff changes it was eight months later before she was called back for a series of more intensive tests. These confirmed her suitability for an implant.

Normally she could have expected to wait several months before having the operation. However the local health authority accepted her as a priority case partly because of the importance of her being able to hear to care for Chris and partly because of the risk of her inner ears suffering further damage that might jeopardise the success of an implant. So she had the operation within three months of the completion of the tests, and her processing equipment was switched on two months later.

The effect of the implant on her hearing was dramatic. She could hear speech immediately, without looking at the speaker, and within two months was assessed as hearing about 60% of what a person with normal hearing would hear. Each month she made further progress and within eight months was hearing almost normally (officially 80% of normal hearing), with only a few exceptions. She still could not follow conversations in a group; she could not use the telephone against background noise; and she found softly spoken people unintelligible. Otherwise she could hear nearly as well as before she contracted meningitis.

Taking an Open University course

Shortly after her cochlear implant operation Gloria embarked on a short Open University course in the social sciences. This was a bold venture. To begin with she often had to ask other students to lend her their notes and to ask the lecturer (who spoke very rapidly) to repeat himself; but by the end of the course, when she had become accustomed to the cochlear implant, she could follow most of what the lecturer said and the contributions of fellow students sitting near her. She had proved to herself that she could function effectively in a group of hearing people and now felt ready to consider returning to work.

Stage 4: getting ready to return to work

When Gloria began considering her return to work she followed the HT's recommendation to contact the local Disability Employment Adviser (DEA).

The DEA recommended that as a first step Gloria should go on a one-week personal development course at Queen Elizabeth's College for disabled people at Leatherhead. The course offered the trainees an opportunity for self-assessment and self-presentation for their future employment; it was paid for by the Government and did not affect her benefits.

Gloria found herself in a class full of men less disabled than herself, who had worked in manual occupations and, in some cases, had a long history of unemployment. She did as well as the men in the various aspects of the course including self-presentation, and her ability to communicate with trainees who had no hearing problems proved the effectiveness of her cochlear implant. The trainer in charge of the course felt that she had performed well and would undoubtedly succeed in getting back to work.

After this course the DEA referred Gloria to a six month rehabilitation course in office work, designed to familiarise her with working again without putting her under pressure. She undertook a range of administrative tasks including working on reception. After two-and-a-half years away from a working environment, she found it very helpful to be able to adjust to working again gradually and rebuild her self-confidence.

At the end of this course Gloria accepted that she was no longer incapable of work, and so her entitlement to Incapacity Benefit ended. Her next step was to update and improve her computer skills. She applied for an Information Technology (IT) course at a local college, but found it to be very expensive. When she asked for help from the DEA, he found her a place on a government funded IT course for unemployed jobseekers. At first she attended for only two days a week, but later for four days. When she finished the course, she gained a NVQ Certificate in IT skills.

Stage 5: active jobhunting

Before the course had ended she had started jobhunting. Gloria wanted to continue working in administration but, with local authority employment closed to her, looked for jobs with hospitals, housing associations and charities that she thought would be sensitive to the needs and aspirations of deafened applicants. However, she avoided mentioning that she was deaf on her job application forms and soon found that at selection interviews, if she sat reasonably close to her interviewers, she could answer their questions without revealing that she was deaf until the end of the interview.

After she had been applying for jobs for three or four months, Gloria applied for a job very similar to her previous job as administration manager at the Shaftesbury Society at a good rate of pay. She interviewed well and was offered the job, subject to satisfactory references and the usual police check, as the job involved working with children. Unfortunately, just when the Shaftesbury Society was ready to confirm its offer, it had to reduce its budget, and the job was retrenched.

Gloria was devastated at being robbed of such a good opportunity; but a week or two earlier her local DEA had given her details of some vacancies for administrative assistants to work with the Disability Services Team.

She now felt under pressure to find a job quickly because she needed to start earning to increase her income as soon as possible. Although her salary as administrative assistant would be considerably less than she had earned in her last job, her pension would make up the difference.

The jobs themselves looked interesting and rewarding. They involved helping the DEA to find appropriate rehabilitation and training programmes for disabled clients and looking for suitable jobs on the Employment Service's computerised list of vacancies. Moreover, there was a chance that she could become a DEA herself once she had gained experience as an administrative assistant, and more generally the prospects for advancement were likely to be better in a large organisation like the Employment Service than in smaller organisations such as charities. So Gloria decided to apply.

She was called for interview with two experienced members of the Disability Services Team. She answered all their questions comprehensively, without having to reveal her deafness, and was offered one of the posts. So she started work again, as administrative assistant to the DEA, three years and eight months after being discharged from hospital.

Gloria's progress in employment

At first she found her new job very tiring because she was not used to the pressure of work involved in dealing directly with the public. However the DEA (who was her manager) made sure that she took regular breaks, and she was allowed to work flexitime; this enabled her to leave work early to collect Chris from school. Gradually she adjusted to her working conditions.

She also found that she could cope with most of the situations at work that she had expected to pose problems because of her deafness. She was concerned, for example, that she might not be able to learn as quickly as other members of her group on the three training courses that formed part of her induction. However, at the beginning of each course she explained to the lecturers that she was deaf and was given a seat at the front so that she could hear them. Secondly, the lecturers used flip charts and provided handouts. With this assistance she could usually keep up with the other trainees.

At group meetings she sat next to the senior manager, who gave out most of the information, and she relied on notes taken by her own manager, the DEA, to check on points made by others.

She was equipped with an amplified telephone through the Access to Work programme, and the Cochlear Implant Unit where she went for checkups on her hearing supplied her with a device for her speech processor, which she could activate to eliminate all background noise when she was on the telephone. With these technical aids she found that she could handle most telephone calls without much difficulty.

After her first three months in the job, Gloria was made a permanent member of staff. Since then she has gradually been given more responsibility and now has the title of Assistant DEA. Although she still deals with the administration side of the job, she is now also involved in most of the work which the DEA does in helping clients. As a result of her personal experience, she believes strongly in the value of the DEA's role in helping disabled people to retain their jobs or find new employment and has recently applied to become a DEA herself.