Interview by Rui Pastorin
In 2000, after 12 years in Macau, Cyril Axelrod moved to the UK. At that time, his world had gone dark. He had completely lost his vision.
Born deaf in South Africa, Axelrod had travelled around the world as a priest to serve and minister to deaf communities, coming to Macau in 1989 and identifying the needs for the local deaf community. Here, he helped set up the Macau Deaf Association (MDA) in 1994, where he was founding president, as well as working towards setting up a special programme in a pre-school education centre for deaf and hearing-impaired children.
With the complete loss of his vision in 2000 due to Usher Syndrome, a rare genetic disorder that causes the progressive loss of vision and hearing, Axelrod became deafblind. However, that wasn’t the end as he has continued to conquer the darkness and overcome challenges that followed.
Axelrod took on chances to continue learning, among which was studying aromatherapy at a UK college for two years, even coming first in his class. “The principal could not imagine how I could achieve this”, Axelrod, with the help of an interpreter, told the Post in a recent interview at the MDA headquarters.
He also volunteered for the deaf and deafblind in cities around the UK, painted and exhibited works featuring the world around him created from memory, and has written several books. In his most recent publication “Conquest of Darkness”, he even said that despite the challenges, he was grateful for his deafblindness. “I want to show people that the deafblind can do everything”, he said.
Now, at the ripe age of 84, he continues his commitment to the deaf as well as the deafblind in Macau, having been invited by the MDA to return in 2024 to not only receive care from the association but also promote understanding, services, and training programmes given his extensive experience. He also hopes to help social services understand the needs and support of not only the deaf, but also the deafblind.
Building an understanding for deafblindness
Deafblindness is more than just a combination of the two different disabilities. According to MDA Executive Director Nerissa Lau Sut Man, who was interviewed together with Axelrod, the disability is a distinct one that can be categorised into congenital deafblindness (meaning present from birth); deafness followed by blindness; blindness followed by deafness; and acquired deafblindness, where vision deteriorates later in life and is common among seniors.
In Macau, Lau said that the situation cannot be fully understood in the city just yet, but from their experience, they have served cases, with about 30 being those related to deafness followed by blindness.
Macau also has no official records available for the number of deafblind individuals at the moment, with the city among the many places where it is not categorised as an independent disability.
However, just as with the hopes of United Nations (UN) and The World Federation of The Deafblind (WFDB) worldwide, Axelrod and Lau said that it is important for everyone to recognise the condition as a distinct, independent disability category rather than a subset, having its own set of needs. Supportive services for either just the blind or deaf therefore cannot simply substitute the services for the deafblind.
“We have to emphasise that deaf-blindness is not purely a combination of deafness and blindness. It is actually a very unique and complicated disability that needs very high demands and support”, Lau said, with the association hoping that the government can also independently categorise this special group of people in the future to be able to get “more accurate help”.
Moreover, they hope that there can be a way to garner precise data on the deafblind. “We think that having more precise data is the first step for the Macau government to have more accurate planning of the services, Lau pointed out, with more information paving the way for the next step.
Communicating while deafblind
In terms of communication for the deafblind, it is also another aspect that makes it distinct as it is without the common ways of doing so.
Therefore, touch and tactile sign language, which is where the sign language receiver places their hands lightly over the signer’s hands to feel the shapes, movements, and gestures, become their means of communication. For Axelrod, who likes to communicate and know more about the world, he also incorporates assistive technology to not only do things like tell time and read the news, but also communicate through WhatsApp and emails, such as with the use of a special keyboard fitted with braille.
Certain contexts however, may prove difficult, from going shopping to visiting the hospital. Axelrod recalled one incident last year when he was hospitalised in the ICU (Intensive Care Unit), noting that it might be rare for healthcare professionals to have patients experiencing deafblindness.
Lau noted: “If one is deaf, one still may use the writing or the cards to communicate with the healthcare professionals if he knows how. If one is blind, one can still use speech to communicate. But for those with deafblindness, it’s very hard, even for very simple conversations”, noting that future education and professional courses are therefore important not only to help and respect the deafblind, but assist them in independent living.
Axelrod therefore hopes to foster communication, noting: “I would like more people to understand the needs and then to build up better communication with each other”, also wanting to help others learn how to support, build companionship and communicate with the deafblind, knowing that many may not know how to do the latter and might feel discouraged once communication is broken.
Moving forward
While highlighting how imperative it is to build better communication, Axelrod also pointed out: “Many people think that the deafblind need nothing. I don’t think so. The deafblind need people to support them, but also give them the chance to live and increase their knowledge. They can learn new things to be independent. And that’s to show that a deafblind person can fulfil everything to the society”.
He emphasised his aim of assisting social services in becoming aware of and understanding that there are opportunities for the deaf and deafblind, while also listening to what they need. Overall, Axelrod said he aims to help the local government and its social services know more and understand the support needed for both parties. He also hopes to inspire those facing the same situation while giving them a chance at better communication and exchange.
Cyril Axelrod poses for a photo at the Macau Deaf Association’s headquarters on Travessa dos Estaleiros (船廠巷).
Cyril Axelrod and Nerissa Lau communicate through tactile sign language – Photos: Rui Pastorin
Cyril Axelrod demonstrates how he can tell the time through vibrations on his smart watch and shows his keyboard.
