Living in a silent world

Living in a world where the only sound might be an incomprehensible noise magnified by a hearing aid is the norm for Susan Thomas of Nelson.

Her world consists of interpreting and reading lips, hands, sign language and facial expressions in an otherwise silent world.

Susan, 32, was born profoundly deaf. Her parents and specialists do not know why.

At nine months old her parents noticed she was not responding when they made sounds.

Susan started her education at a deaf school in Christchurch at age 3½. In those days many parents wanted deaf children to be “normalised” and to be able to speak, so oralism was pushed.

The children were frustrated and often couldn’t understand what the teacher was saying if they couldn’t lip-read.

“Sign language was forbidden in the classroom but we would sign furiously in the playground,” recalls Susan.

At nine years of age she moved into a deaf unit in a hearing school, where the deaf mixed mainly with other deaf children. They were taught academic subjects in classes Susan describes as “substandard.”

Susan wanted to speak up but didn’t for fear of getting in trouble, she says.

She took typing courses at a polytechnic when she left school and worked in an office typing for nine months before being made redundant.

Susan was unable to get another job in an office because she didn’t have telephone skills.

Instead she took a job in the sewing industry and became a machinist. She is currently one of four deaf people working at Sealord’s fish processing factory.

Susan met her policeman husband Paul through deaf friends who played in a rugby team.

Getting to know each other at first was difficult because Paul did not know sign language.

They would write pages and pages of notes and finger-spell words. Things got easier as Paul learned to sign.

The couple now have two boys and two girls, ranging in age from three to 12 years, all with normal hearing. The family shifted to Nelson in 1990.

When Susan had her first two children, she used an old hearing aid to hear if they were crying. If they were close enough to her, the hearing aid made a noise and she knew they were crying.

However, by the time she had her two other children baby alarms for the deaf, with flashing lights and a bell which can be heard with a hearing aid, were available in New Zealand.

The children soon found out their mother was deaf: when they called she could not answer. They learned to use touching to gain her attention and sign language or finger spelling.

Susan says communicating in places such as banks or where new people come be difficult. Sometimes she resorts to writing things down, repeating herself, or instead getting her husband to interpret.

Hearing people she knows really well are easier for her to lip-read.

Being deaf hasn’t stopped Susan from participating in sport. She has played basketball and netball and now loves a game of squash.

Susan says being a deaf person married to a hearing person can cause some isolation, especially in group situations.

“If my husband is talking to hearing people I wonder what is happening and have to ask him.”

Susan is an advocate of New Zealand sign language and teaches it at Nayland College two hours a week.

Students in her class range from people who want to be able to work with the deaf to those who have deaf family members.

She is also one of 25 to 30 members belonging to the Nelson Deaf Club and is on its committee. While in Christchurch Susan was a reader on News Review for the Deaf. The programme has since stopped due to complaints that screening it on Sunday meant news was old.

She strongly believes that New Zealand sign language should be recognised and used in deaf schools. The deaf community wants it to become deaf children’s first language as it is simpler for them to learn and will help them learn English sign language as a second language.

Susan says the mainstreaming of deaf children in hearing schools with limited visits by deaf advisers is inadequate.

When the advisory teacher is gone, the deaf child is left struggling to understand classes.

“It’s important for them to be learning all the time so they can gain qualifications and feel better about themselves,” says Susan.

This week the Special Education Service in Nelson announced that former once-monthly visits by the adviser on deaf children are to be cut to once a term.

However, Susan is thrilled about the recent installation of a telephone typewriter at Lifeline in Nelson to help deaf people communicate with others.

People wanting to use the service phone Lifeline where an operator will phone the deaf person and type in a message. That message will appear on their telephone typewriter’s screen or be printed out.

The machines can cost more than $500 but welfare grants and sponsorship put them in the reach of most deaf people.

She vigorously supports the New Zealand Association of the Deaf’s aims to enhance life for the deaf.

The association wants discrimination against a person because they are deaf banned. It is lobbying for a national relay system and for deaf people to be trained to take the 30 fulltime interpreters available for the deaf.

It also plans to produce a programme to be screened in government departments and schools to make people aware of the deaf culture and sign language.

The association is calling for full consultation with the deaf on educational matters involving them and for more support services to meet the needs of deaf people.

Her hearing dis­a­­ppearing

Fliss Maera’s world is gradually becoming more and more silent.

Fliss, 19, has a rare hereditary deafness which makes a person deafer as they grow older.

When she was born, her hearing loss was less severe and she was able to learn to speak. However, this is fading now. She used both hearing aids and had moderate to severe deafness.

Eventually, she will be profoundly deaf even with the hearing aids.

Fliss has the advantage of being able to speak clearly, which people deaf from birth can’t do, and she lip-reads. All this makes communication with hearing people easier.

“I’ve got a head start. The possibilities are unlimited because I can talk. Some people say hard of hearing people don’t fit in, that you have profoundly deaf and hearing people and the others are in between. I think it’s possible to fit in with both and have an advantage.”

However Fliss has not always accepted her deafness.

When younger she tried to be part of the hearing world and negate the fact that she was partly deaf.

No matter how hard she tried to participate, other deafness frustrated her. She missed out on social chatter and found it hard to feel included.

She wasn’t deaf enough to be with deaf children but couldn’t participate fully with hearing people. She didn’t need a hearing aid until she was nine years old.

“At one stage I wanted to experience everything while I could hear. I felt like if I waited until I was deaf I would miss out. Now I feel different – like I can do anything even though I’m deaf,” she says.

When she was in school she belonged to the Air Training Corps. As she got older and her hearing got worse, leading mock war exercises became a frustrating task.

“I would be leading people but wouldn’t know what was going on. That really brassed me off.

“Sometimes we would be marching and I’d march off in another direction.

“I eventually left. I wanted to join the air force but I just had to accept that I couldn’t,” she says.

Fliss, born in Nelson, started school at Stoke Primary where she learned alongside hearing children. At about age nine she moved to Whangarei where she attended intermediate and high school.

With the help of private tutors and advisers for the deaf she did well at school. In class a walkie-talkie enabled her to hear the teacher.

However, when she got to the sixth form her hearing deteriorated and to understand the teacher she needed to be close enough to lip-read.

She left and studied by correspondence.

Fliss and her husband of two years, Jason, moved to Nelson at the beginning of 1991 for the quality of life and brighter job prospects. Since then Fliss has been involved in the deaf community and is secretary of the Nelson Deaf Club.

She has currently taking a one-year course at Nelson Polytechnic, called “teaching people with disabilities.” Her aim is to be a social worker for the deaf.

Being a deaf person married to a hearing person puts an added strain on the marriage, she says. At the start her partner had to develop extra skills.

Her parents divorced when she was a child. Her mother is dead, as is one of her three sisters.

Apart from the ordinary sort of frustrations and communication problems there was an extra strain on her parents’ marriage. However, there were other factors involved in their divorce, Fliss says.

“People in situations don’t break up because of disability – it’s people’s attitudes, how they handle it.”

Women born deaf commonly marry deaf men. However, Fliss believes some deaf women end up in bad marriages.

There is a certain type of person who is attracted to women with disabilities because they consider themselves better than them, she says.

“It’s a power trip. Their attitude is that you don’t deserve any better than me. I’m doing you a favour being in this relationship.”

It is especially important that both partners in a marriage feel equal when a person with a disability is involved. Both have to be confident in the relationship. Both have to be confident and assertive in themselves, she says.

Messages that people with disabilities sometimes get from the community often don’t help.

“It’s important people with disabilities get the message that they are important and have something to contribute. They are not a burden on the community.”

Fliss and Jason are expecting a baby in February. The chance of their baby picking up the hereditary genes which cause Fliss’ particular type of deafness is about 40 per cent.

If the baby does pick up the genes, there is about a 60 per cent chance it will become deaf.

Fliss says she is more concerned about having a baby born with another disability than deafness. She could cope with a deaf child.

“When I was younger I used to feel like I didn’t want to have children because I didn’t feel I had the right to pass it on.”

When the baby comes, she plans to carry on her work with the deaf club and hopes to do part-time work as a social worker for the deaf.

Fliss says she wants to enjoy her baby and so would not work fulltime. She also wants only one child because she knows that children can be demanding at the best of times and being deaf will mean looking after her child will take extra effort.

Fliss expects the most stressful time to be when the baby is a toddler, starts to move around and she can’t keep track of the baby by listening.

It could also be frustrating when the baby starts talking and she can’t understand, she says.

Fliss says being deaf can make one feel lonely or vulnerable. At night Fliss cannot hear the sounds which sometimes send hearing people trying to sleep into panic. However, she does at times worry about someone coming into her room while she is asleep without her knowing.

“I can’t be afraid all the time. I have to feel strong in myself otherwise I’d just be a wreck. Some deaf people are like that,” she says.

For deaf people, communication means extra concentration. Fliss says it can tire you out and it is important to have time out alone, to relax.

There needs to be more of an awareness in the community about deaf people, she says.

People are aware that people with wheelchairs need ramps. They need to be aware that people who are deaf need interpreters.

Fliss believes interpreters should be provided for the deaf to use in essential services such as social welfare, hospitals, doctors’ surgeries, polytechnics, courts and schools.

At the moment there are only four paid fulltime interpreters for the deaf in New Zealand.

Fliss says it was good for the deaf community that the Ivan Curry Case, involving a wrongful murder charge, came to light (on television).

In August 1988 Ivan Curry was arrested for the murder of his baby nephew at Waitotara near Wanganui but later released. The evidence was a four-page written confession but Mr Curry could neither read nor write and was profoundly deaf.

The Association of the Deaf asked for police procedures to be changed and for interpreters for the deaf to be used in such cases.

Fliss says the case was a disgrace as it is everybody’s right to be fairly represented.

Without an interpreter a deaf person doesn’t know what they’ve supposedly done wrong or why they’ve been picked up by the police.

Fliss also feels strongly that the deaf have the right to have New Zealand sign language recognised. It is different from overseas sign language and from what is used in schools.

The latter is the literal translation and includes the little words but New Zealand sign language uses a pictorial concept, more natural and easier for deaf people to learn.

Fliss started learning sign language last year as part of a total communication course, which included teaching on facial expressions and lip-reading.

She says some people think deaf people are stupid, drunk or have intellectual disabilities. They feel that communicating with them is going to be a waste of time and don’t make the effort.

However, many hearing people find learning sign language exciting, says Fliss, and it gives them a real appreciation of being able to hear.