I’m delighted to be part of the opening of the tenth Acquired Deafblind Network Conference here in Belfast, Northern Ireland, entitled Life, Love and Laughter. DbI is grateful to the ADBN Network for putting the spotlight on Acquired Deafblindness. I attended the last ADBN conference in Lund Sweden in 2012 and was impressed with the quality of the program and the new thinking that was coming out of that conference and I know from the program here that this one won’t be any different. Your plenary speakers on this opening day, Professor Richard Schoch and Henrik Brink, will bring to you thoughtful presentations.
Yesterday I was able to attend several excellent presentations of the Usher Syndrome preconference. While sitting there I was reminded of the late Mary Guest and her huge commitment to Usher Syndrome. I felt Mary on my shoulder a couple of times. I went with Mary in the mid 1980’s to Louisiana (USA), an area with a high incident of Usher Syndrome, and was reflecting on that as I was listening to yesterday’s presentations. At the preconference we also had a clown. Those of you who weren’t there might not know what I’m talking about. But if you don’t know, could you ask Megan Mann! And last night wasn’t it special to be entertained by this wonderful group of young people from the Youth Network, spearheaded by Simon Allison?
As I welcome you today, I take the opportunity for some reflections. First, I feel that the future of DbI and our organizations and deafblind services is safe as I look around at the more youthful faces that are in the audience.
Secondly, these periodic conferences and meetings are further justification for why we need to get together! It is important to get together; to renew and refresh our friendships and share knowledge. Ours is a large and dispersed community not able to come together often enough. When we do meet, we pick up where we ended the last time; a sure sign of a tight community. It’s important to renew our faith and remind ourselves why we are here.
I want now to speak from the point of view of CEO Sense to say “it’s tough out there”. I’ve been in this field for over 35 years and I’ve never seen so many challenges facing us. Funding for services in the UK is being cut from all sides despite the fact that the need for services is not diminishing. Organisations outside the UK are experiencing similar difficulties. So, it is important to get together and gather strength from each other.
The population of individuals that we’re working with is not diminishing. Many of us are working with children and observing the growing population of children with CHARGE and other rare syndromes. Furthermore, there is an ever growing elder population with which we are working. Like those with Usher Syndrome, this growing population of the elderly facing isolation caused by sensory impairments is an issue that we need to become more focussed on.
An issue that I am proud to have with our ‘community’ is our worldwide perspective. At this conference we are pleased to welcome over 150 delegates, from over 14 countries. Despite this, in DbI we still have huge gaps in terms of representation from many parts of Asia, Africa and Russia. It’s a huge task to get representation from those populations. I’m delighted that we have a delegate from Ethiopia with us. Take a moment to talk to him or see his workshop to see his fantastic work.
I was in India recently, and I was interested in the debates that they were having. More and more they are talking about inclusive education which is interesting for such a huge country where half of the children are not going to school at all. There are absolutely massive challenges there. For example, I went to see a school where there were still many children who were deafblind through rubella. Indian children and those from the African countries as well, are still being damaged needlessly by rubella. We still have massive work to do on prevention of sensory disabilities.
Further to the subject of the international perspective, I want to mention that earlier in the week the DbI Board was privileged to have in attendance, Lord Colin Low, President of the International Council for Education of Visually Impaired (ICEVI). I mention this since Lord Low is influential in the development of the United Nations Post-Millennium goals. It may be surprising to know that when the initial Millennium goals were set , there were goals stated for gender equality, poverty and education, etc but not a single mention of disability. Can you imagine?
I know this might seem a long way from your day jobs. The reason this matters is that inevitably when the UN looks at new goals for post 2015, funding is expected to follow. So we need to pay attention to this issue as funding is also necessary for the important research that is required for Usher Syndrome, as an example.
Beginning next week I will be in London because I’m going to be part of the ‘Bond for International Development Conference’ which for the first time will be looking at disability. So we have a real chance to get the word ‘disability’ in the post—millennium goals and that is really critical for us, because in a year’s time, we will see whether this eases our flow of policy and funding. We don’t expect to get deafblindness or hearing impairment included in the goals. Since individuals with visual impairment represent a huge population in the developing world, we might see vision included. What we are hoping for at a minimum is the recognition of disability. Even with this recognition we could observe some positive improvements.
I know that I stand between you and Professor Richard Schoch so I’m not going to speak for much longer. I’m not surprised by the ADBN’s title: Life, Love and Laughter and I fully agree with it. I turn to India the Indian guru and spiritual leader Sai Babba for a quote which aptly reflects the theme of this conference: “Life is a song-sing it; Life is a game-play it; Life is a challenge-meet it; Life is a dream- realise it; Life is a sacrifice-offer it; Life is love; enjoy it”. Have a great conference folks!