by Jan Evans
“The best thing is that I’m alive”
So said Satoshi Fukushima in a fascinating and moving 28 minute video shown at SADeaf’s excellent “Introduction to the Deafblind” Workshop on Saturday, 13 June 2015. Satoshi lost his hearing at 9 yrs old and his sight at 18 yrs. At that latter point in his life, he admits he “hit rock bottom” then came to realise that there was purpose in his hardship and suffering and “climbed out of the pit”. Now a leading advocate of the Deafblind in Japan, Dr Fukushima is currently Professor at Tokyo University Research Centre for Advanced Science and Technology. His research specialities include social and psychological aspects of deafblind people.
It almost goes without saying that I was introduced to a new world last Saturday. The workshop was run by Lisa Loh, an energetic 20-something who is deaf and has Retinitis Pigmentosa: She is able to see less and less in her peripheral vision and knows that in time the rest of her sight will follow. Lisa explained the different causes and levels of deafblindness and the different types of communication. The Deafblind communicate through touch (Braille, Tactile Signing or Finger Braille). I was awestruck to hear that Satoshi’s mother, Reiko, developed Finger Braille “because there was no Braille typewriter in the kitchen” and amused to hear her casual aside to him “You could have been more enthusiastic”!
The workshop included a simulation of deafblindness. We paired off, one person being the deafblind person (donning a triple layered eyemask and very thick headphones/ear defenders), the other was the Interpreter Guide (IG – who communicates with and leads the deafblind person). Then we swapped roles. One guided route took us up and down stairways and along winding corridors; the other had us sampling (by touch) various objects. Your comfort level very much depended on the trust you had in your IG. The experience was telling and I am sure you can imagine the feelings of isolation and helplessness. The role of IG proved more demanding especially when I was teamed up with someone who was deaf/hard of hearing where any meaningful communication was by fingerspelling Roman letters on the palm (note to self – it doesn’t work sideways) or tactile sign writing (no – I don’t know how to do that properly either). I thank my deaf/HOH partners for their grace and forbearance – and good humour.
I was interested to learn that Dr Fukushima has spearheaded quite an influential deafblind movement in Japan. Lisa has met a number of deafblind IGs there: 50% of them had experience as Sign Language Interpreters, just less than 50% as Blind Guides and the remaining small percentage had no experience at all. Most IGs in Japan are NOT related to the deaf blind person which facilitates more independence.
So what of Singapore?
We have all heard stories about well-intentioned passers-by “helping” those who are blind/visually impaired across the street …when they didn’t want to go! However this situation would not occur with a deafblind person. It is inevitable that there will be an accompanying IG.
There are about 13 Deafblind people known to Lisa: 7 are registered with SADeaf/SAVH. There are probably more. In Japan, an estimated 22,000 people are both deaf and blind.
IGs for the Deafblind in Singapore tend to be family members but they need a rest occasionally. There may be formal provision for Befrienders to take deafblind people to a hospital appointment or church service but the Deafblind still have difficulty accessing leisure activities.
To learn more about SADeaf’s deafblind workshops please go to SADeaf’s website at http://sadeaf.org.sg/ – I understand Lisa will be conducting a 3rd “Introduction to the Deafblind” workshop at the end of this year which, no doubt, SADeaf will advertise nearer the time. I commend it.
Jan Evans is a volunteer at Disabled People’s Association, Singapore.