Deaf-blind Awareness Week
People do not notice many Deaf-blind people, even Blind people and Deaf people in the society.
There is nothing to be afraid of Blind, Deaf, and Deaf-blind people when you meet and try to blend these people into your space, room, and in the society.
Did you know about the sensories in your bodies?
Touch, smell, hearing, taste and see are the sensories we use every day in the lives.
Deaf people lose their hearing by birth, illness such as measles and involve in an accident, not wearing ear muff in the heavy industry, loud music during the massive rock concert that causes hearing loss, and many other issues.
Blind people lose their sight by birth, illness such as measles, involve in an accident like wielding, loose stone into the retina, no eye protection glasses, and many other issues.
Deaf-blind people lose their hearing and sight at the same time or lose either the hearing or sight first, then their sigh or hearing later.
Their communications are to feel objects, hear the description of any images/objects, use tactile sign language, lip read, and Deaf sign language.
The deaf blogger – Jean was born deaf, but my deafness discovered by late grandmothers when Jean’s mother questioned her mother in law about the balance of standing and speech delay under the age of 18 months old. Today Jean is very independent and mainly overcome the barrier through the hearing world. Several cousins have disabilities in Jean’s father’s side family. One of Jean’s cousins – Kerry was partially blind, and his parents noticed something different in him. Jean recalled her grandmother – Mama told her that Kerry is going to have surgery on the left eye when he was a baby. Mama and Jean’s mother tried to explain to Jean about Kerry and the condition when Jean was 3 or 4 years old. Jean recalled what they told her was a new eyeball – Boney orbit or eye socket. Kerry can do himself so he can learn to get around from an early age to the present day as an independent. Jean recalled one of those school holidays where her grandparents always take Jean to Tauranga and Mount Manganui. One day Jean and the grandparent were visiting Kerry and his parent’s house for a half day. Jean walked into the bathroom and noticed Kerry washing the eyesocket in the handbasin. Then, he started fooling around with his eyesocket by teasing Jean. Jean does not scream, just a bit of surprise and puzzle where the eyesocket came from Kerry’s hand.
Click the photos for the descriptions.
Kerry’s disability does not bother Jean, for we can do anything like in the photo where Jean, Kerry, and his brother – Craig holding the ducks over the school holidays. The age between Jean and Kerry is 3 years different, as Jean is the oldest. Here are a few more photos.
Here is Kerry’s responded via his partner, based on his past life as a ‘pranked guy’, but in the past, he was a car mechanical and outdoor type.
Kerry has had an artificial glass eye most of his life.He use to always take it out and put it in his mouth to wash it also. Kerry’s parents removed his eye when he was a baby.Then he wore a pirate patch for quite along time in his younger days.
Kerry uses is an Apple IPad which magnifies. Its brilliant he wouldn’t do without it. He can take photos with it and then enlarge to read or view things easier. He also had a magnifier machine which the Blind foundation supplied him.
A couple of funny stories- Kerry use to drop his eye into people’s glasses of beer so he got to drink them Also he was at the hot pools one night with his friends when he lost his eye in the pool. When they asked everyone to help look for his eye they all got out of the pool and went home
It turned out a Retinoblastoma at the age of 3 weeks old. Retinoblastoma is a rare form of eye cancer and is usually formed in the early stage of baby-child. This is what Kerry’s diagnosed when he was 3 weeks old. His right eye is becoming fade slowing. I wonder if Kerry is aware of his future if he loses some of his hearing ability and starting learning to communicate in sign language or not. Really, this is Kerry’s choice, not us.
Jean left high school and starting to explore more areas where children/people with disabilities like Deafblind children/people. Jean started to learn more from them, especially in the United Kingdom, Ireland, the USA, and Europe. Currently, Jean is involved with a Deafblind support group in Waikato, and she is aware that there is a Deaf Usher group in New Zealand.
Jean knows that there are a brother and sister who have the same symptoms – Usher, and a Deaf later became a Deaf usher living in Australia. Jean read a book about Father Cyril Axelrod after meeting an old friend of Jean in London through Social Services. Later, Jean learned a couple – a hearing Deacon man and his wife, who is Deaf, moved to New Zealand. This Deaf wife is an old friend of Father Cyril over many years, and they regularly keep in touch with Father Cyril. Who is Father Cyril Axelrod? Here is the link about him.
What is Usher syndrome? Usher syndrome is known as Hallgren syndrome, Usher-Hallgren syndrome, retinitis pigmentosa-dysacusis syndrome, or dystrophia retinae syndrome. This syndrome causes a one-off set of genetic disorders caused by a mutation in any one of at least 11 genes resulting in a combination of hearing loss and visual impairment.
There have been enormous barriers for many Deafblind children/people out there due to no technologies in the old day, braille resources in the library and education, walking cane, no guide dogs, the lack of support persons to assist them around homes and in the communities. Braille system is terrific for them to read while most Deafblind people prefer tactile sign language to communicate.
Today many new technologies are making more accessible for all Deafblind people/children. The downside is the cost of manufacturing equipment that works well for them and making available to all types of computers such as Apple – Apple mac, Windows software, Ipad, Braille embosser, Tele-Touch, Tele-Braille, Deafblind communicator device. Not all computers such as Windows work well due to software, adapted to change the software into voice recognition, read over, graphic, screen enlarger to match the Windows computer. The downside is long to catch up with many new members who become Deafblind, the cost of getting one through funding, and to keep update and making more accessible to access resources and information from all public and private businesses. What about getting them a job to earn income? Who knows? What about the third countries like Africa, Asia, the Pacific Islands?
Jean is lucky to have Apple desktop, Ipad and laptop, and in the accessibly setting, there is a function that Jean can change from font transcript into braille before sending off to a blind person even deafblind person.
Here is the link from Perkins School for the BlindPerkins technologies for Deafblind
The tactile sign language is still around, and currently, this sign language is not known to many D/deaf people. Here is one of the sign language Deafblind people/children use today.
Note – this sign language is Tactile Auslan.
Please make sure to include Deafblind members, persons in your family, or support group even in the churches. So they do not feel left out or feel lonely in society.
