On Friday 22nd November, Dr. Father Cyril Axelrod, the world–famous deafblind priest, was awarded an OBE for services to the deafblind in Hong Kong by Her Majesty, the Queen Elizabeth II, at Windsor Castle.
When Father Cyril lost all of his sight due to end stage Usher syndrome over ten years ago, he believed that was the end of it and his lifetime work for God was finished. But it has given him a new purpose in life and a new mission: to help the deafblind people around the world and he hasn’t looked back since.
For a lowdown of his life and work, read his 2005 autobiography; And The Journey Begins.
Fr Cyril is constantly on his travels, but I managed to sit him down for an hour to talk exclusively to The Limping Chicken about his OBE and how Her Majesty almost awarded his OBE to someone else (!); his book; his recent troubles with a South African airline company and the challenges of overcoming the rigid cultural barriers in China to help deafblind people…
First of all, many congratulations on your OBE.
When you first received the news that you were getting an OBE, how did you feel?
Last April, I first received a quite big envelope from Her Majesty’s Commonwealth. Hester [his communicator–guide] was here and I remember that it was about the same time that I had to pay my tax so I left it there.
But she told me a while later that I would be receiving the OBE, and I questioned whether it was actually for me and who had nominated me! She said that it was the Hong Kong Association for the Blind that nominated me and I was absolutely gobsmacked and I didn’t believe it.
I was overwhelmed and I didn’t think that I was worthy of receiving such an honour. She read the letter to me and asked me if I wanted to receive it and at first I said no – so that I can carry on with my private life.
I took some time to think about it carefully and then I was overwhelmed with emotions. I asked her to read me the letter again. I was told it was for the good of the people and I realise that it was the people who have supported me who nominated me for the OBE and I was overwhelmed with joy – and was happy to fill in the form to accept it.
When Father Larry Kaufmann [his long–time friend from South Africa] was guiding me to in front of the Queen, I was not holding my white cane as I had given it to one of the pageboys and the Queen looked at Father Larry and mistook him for me when she tried to pin the medal! Father Larry quickly and politely pointed to me and she then presented it to me after a little bit of astonishment!
You and the Queen had a chat that exceeded the required length of time, what did you both talk about?
Before I met the Queen, the Chancellor said to me that I must have limited time with only a few words with her such as only to say thank you and that’s it. They were very rigid with the procedure that I had to follow.
But for me, it took longer than that and she said to me that I had done such a wonderful work with deafblind people. She then went on to say thank me very much for all of my hard work.
I replied to her that disability is a gift from God and we both made eye contact and she nodded and smiled. She took my hand and shook it.
Compared to other people I had what felt like a lifetime – although in reality it was only for about two minutes!
You gave the Queen your book, didn’t you?
Before the investure ceremony, I wrote a letter and sent a copy of my book to explain about deafblindness in Hong Kong.
I didn’t know what happens until I got there and Her Majesty thanked me for the copy. I hope that she will take the time to read it.
Moving onto your book. Since it was published in 2005, it has been translated into other languages. Which other countries has it been published in?
My book has been translated into five different languages: English, Chinese, Slovakian, Korean and Dutch. I hope it will be published in Australia.
You are a frequent traveler around the world, most of which you have been doing it solo. As a deafblind person, what are the challenges of travelling alone?
I mostly travel on my own and I’m very grateful for British Airways for allowing me to travel independently.
They have given me a privilege card to say that I am able to travel on my own, what communication method is best for me to use when I am on the plane, and I travel a lot.
I always arrange for a guide to meet me at the airport at the other end as well as drop me off there. And whenever I travel on different airlines, they allow me to travel on my own, but there are two in particular that don’t allow me to travel on my own, which are Air Canada and Comair.
We discussed using deafblind manual or block alphabet, how best to communicate and what information I need. I always communicate with them about my needs as a deafblind person, what food I want and I give them all the information necessary that puts them at ease.
When I get on the plane, I show them the privilege card that British Airways gave me and they are aware of what to do and what information is important for me and if they want to know how to help me in an emergency situation or any of those questions I am quite happy to answer, for example; I can put on the lifejacket myself.
However, some of the cabin crew can be very nervous when I board the plane but I try to reassure them and make them feel comfortable which is important for them to help other members of the crew to be at ease and to understand how to cooperate with me and deafblind people and that’s my responsibility to ensure that the information is passed on clearly.
You recently hit the headlines when you were prevented by Comair in South Africa because they would not allow a deafblind passenger to travel alone, what was your reaction at that time?
It was an incident that was severe discrimination because when I bought tickets for the flights through a travel agent and asked them to please inform Comair that I was deafblind.
But they refused me, saying that because there was no way of communicating with me on board.
My human rights as a disabled person were breached.
Comair later caved in and let you fly with them; has this issue been resolved?
Initially, I had Father Larry write a letter to the company informing them that they had discriminated against me.
They replied in saying that they were following the policies of the National Aviation Authority (NAA) that permits a deaf and a blind person to fly alone but each airline company have different policies.
They have a choice of whether or not to comply with the national and international aviation committee rules.
This situation is being worked on in the hope that other people will see that this rule needs to be clearly followed on from the international aviation committees’ rules.
They [the airline companies] need to be very clear on how to follow the rules and what they mean. For example; Air Canada have said that the rules say that a companion must be with a person with mental or physical health but those with single or dual sensory loss are not covered in their rules.
Aside from being a global-trotter and promoting your book, what other things have you been doing lately?
My next project is promoting deafblind awareness in developing countries. I know that many countries are not aware of what to do with their deafblind people – both children and adults – and I want to be able to promote awareness and understanding from the tractor training courses that help deafblind people to learn the skills necessary to be independent.
For example; some deafblind people in poor countries don’t know how to care for themselves or get support.
I also want to give people there the information and the methods of training, for example; guiding and communication support, and explain what resources can be used to give them ideas of how to support deafblind people.
You have done a lot of work raising awareness for the deafblind and blind people in Hong Kong, how’s that work going? I am aware that the Chinese culture prohibits physical contact, so how does that work with deafblind people there with regard to that?
I’ve spent 12 years in Hong Kong and I understand the Chinese culture and way of doing things in regards to touching and it helped to think of different ways to work with the deafblind community and their families and friends, what ways to help them feel comfortable and not to use the same method that we use here in the UK but in different approaches.
I had to find different ways to match their cultural needs and the necessity of touch when communicating with deafblind people.
For example; they only touch a part of the hand and the Chinese perspective on disability is that it’s bad luck or a bad omen and I have to explain and try to change that attitude towards disability.
I’m trying to put the attitude towards deafblindness in a different light so that people can have a sense of equality and inclusion into society and feel as part of their own family as they should.
This will help their minds to be able to expand in a more physical sense without experiencing any barriers so that they can be independent.
For example; a blind person using chopsticks is extremely difficult, so give them a fork or a spoon. Little adaptations like that can make a difference to their lives and help them develop different skills so that they can feel comfortable integrating themselves into society.
I also help them develop a sense of self awareness because congenitally deaf or congenitally blind people in China will often ask the question: why did this happen to me?
I want to be able to raise awareness and support them to change the attitude that way and to help the community see the point of change through their own culture and see that their attitude to deafblindness needs to be modified and it’s not just about feeling sorry or see them as bad luck.
There is obviously no stopping you from continuing with your work, what’s next for you?
At this moment, I don’t know what’s next for me but I spent five years in Hong Kong helping them develop their services for deafblind people and I am waiting for God to show me the next path available to me and from then on I will continue my work and promote the deafblind community around the world.
As we wrap up the interview, Father Cyril wants to say a few last things…
In some countries such as America and other countries, some deafblind people or people with Usher syndrome are discriminated against by not being allowed to do many things.
I would advise all Usher and deafblind people in these countries to fight and explain their human rights.
It is important because discrimination is unacceptable at any level and it is because laws are for the modern society. For example; the international aviation committees’ policies are not adequate and they have overlooked the human rights for disabled people and is part of the United Nations Convention on Human Rights for Disabled People.
By doing this, it will ensure the access for disabled people in regard to discrimination on an international level and this will change policy and law and stop the rights of disabled people being overlooked and ensuring equality and rights of disabled people across the world.
Photo by Majella Williams.
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