Number 54 • January 2015



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Usher Syndrome PreConference

An unforgettable two days, November 03 and 04, 2014, the Usher Network Pre-conference successfully achieved all the committee set out to do. Held in Belfast Northern Ireland, with ten excellent presenters, the Usher Network brought together over fifty people from around the world1 to meet, learn and listen to some of the most cutting edge thinking in the field of Usher. One prominent member of our committee, Dr.Nadja Hogner from Humboldt-Universitat zu Berlin was able to attend and give an insightful presentation on the role of humour and the Usher community. Attendees ranged from Usher professionals, medical consultants and specialists, family members, language professionals and more importantly several Usher people who served as great role models for the overall event. The seminars were held in the backdrop of a relaxing and welcoming venue and participants were treated to topics as far ranging as Mental Health, Stress, lifestyle factors of Usher people, as well as in-depth medical information.

Medical expertise from the likes of the prominent Professor Andrew Webster and the latest in stem cell research from Professor Maria Bitner-Glindzicz provided much food for thought and after dinner discussions. Of course no Usher Conference would be complete without an appearance from Megan Mann’s alter ego and Megan did not disappoint! She provided a humerous start to her presentation by providing those who wanted to, a tactile tour of her clown’s outfit, followed by an extremely engaging presentation representing the theme of ‘Love, Life and Laughter’ perfectly.

The network were extremely grateful that Mark Dunning from USA, and his daughter, Bella could spend some time with us in Belfast giving an informative talk on how things are progressing stateside and with respect to the Usher Syndrome Coalition2. At the end of the two days, the audience participated in group discussions about the future of the Usher Network, giving the committee members lots of ideas to work and develop on. Watch this space in the near future. Also, Watch for activity on our site on the DbI website: http://ushersyndrome.deafblindinternational.org

On behalf of the committee I would like to say a huge thanks to everyone for being an enthusiastic and engaging audience, as well as special thanks to our presenters and the other members of the network. This has been my first taste of being on the committee and I have to say it has been an overwhelming experience, and on a personal level I found it to be a rewarding and empowering conference.

For more information, contact Emma Boswell, Chair Usher Network (Emma.Boswell@sense.org.uk)



1 Countries represented included: Australia, Brazil, Canada, Denmark, Ethiopia, Germany, Ireland, Netherlands, Norway, Sweden, Russia, UK and USA
2 l .usher-syndrome.org

Usher, an Emotional Journey1


Quentin Crisp2, the English writer once described life in the following way,
“You fall out of your mother’s womb, you crawl across open country under fire, and drop into your grave.”
What a jolly chap he must have been. However, his comments must be considered in the light of his experiences in life. He was a controversial character who was subject to bullying and prejudice as well as fame and fortune. Did his experiences colour his view of life? From birth we start a journey, an emotional journey through life and we will all, to some degree, face adversity. How we cope with adversity will depend on many factors: our personality, our relationship with others, our upbringing, our support networks, our emotional and intellectual development. Those factors determine the difference between having a positive or negative response to those difficult situations. The theme of the Usher conference focused on life, the emotion of love and the physical reaction of laughter. Does having limited sight and hearing mean that love is more elusive and that there is very little opportunity to laugh? Should that person’s journey be seen through the eyes of Quentin Crisp, as an arduous journey constantly under fire?
I spent some time with four people with Usher – Ann, James, Angela and Jeremy who described their different journeys through life experiencing love, life and laughter3.

Love and relationships


I heard from them first about their different experiences with parental love and relationships. In English we have one word for love, in sign language there is one sign for love but going back in history to the ancient Greeks, it is worth noting that in their language they had at least five different words for love4, depending on the type of love that was being shown. There was Agape love, which was love based on principle, an unconditional, selfless love extended to both friends and strangers. Storge love referred to the love shown between family members. Philial love was love felt between friends, when that special connection is made between two people resulting in a friendship that lasts a lifetime. Eros was the romantic love in a partnership which would hopefully, in time, turn into Pragma love. This was a mature love born out of tolerance and compromise leading to a deep understanding and respect for each other.
Finding a partner, someone to share your life with is a tricky business for most people. Developing that close bond takes time and patience. It’s not easy is it? The psychologist Erich Fromm5 said,
“We spend too much energy on falling in love and need to learn more about how to stand in love.”

Once you have found a partner, at some point you might want to consider having a family. Parenting is the most demanding, confusing, challenging job that anyone could undertake. We seem to think that parenting difficulties are a modern phenomenon but John Willmot6, a satirist and friend of King Charles II once said,

“Before I got married I had six theories about bringing up children, now I have six children and no theories.”

Laughter


It is often said that laughter is the best medicine. There have been conferences on laughter, research on humour and articles on how it can have a positive impact on mental health. There’s no doubt about it, having a good belly laugh can be good for the soul. However, psychologists would say that humour can also be used as a defence mechanism against negative feelings. An example of this is making a joke about something that has happened to you, when the real feelings might be deep shame or embarrassment. It may not be appropriate to use humour if the problem really needs to be dealt with and handled, rather than minimized or ignored. Some people might use humour to make the unbearable bearable. It can be a useful coping strategy, as several of my contacts indicated, to see the funny side of Usher and not to take one self too seriously.

Life


The Quentin Crisp quote highlighted the fact that life has its challenges. There are times when it’s difficult to laugh, when love is tested, when we are hurt and disappointed, and when we experience loss. There are times when life throws a curved ball, when life seems to be upside down, back to front and inside out.
Life with Usher Syndrome presents unique challenges. Parents who have that first-hand knowledge of their children must be listened to. Information given at the time of diagnosis must be clear. Ann, James, Angela and Jeremy have talked about those challenges, how at times humour has helped, and how they have experienced different kinds of love.
Forget Quentin Crisp and his painful trek through life I much prefer the quote from William Purkey who urged us all to:
“Dance like there’s nobody watching,

Love like you’ll never be hurt,

Sing like there’s nobody listening,

And live like it’s heaven on earth.”

Megan Mann

Senior Practitioner Acquired Deafblindness Sense UK (Megan.Mann@sense.org.uk)




1 Paper presented at the Usher Syndrome PreConference, Belfast Northern Ireland, November 03-04, 2014
2 en.wikipedia.org/wiki/Quentin_Crisp
3 For the complete transcripts of their journeys, see the text of full paper “Usher, An Emotional Journey” on the Usher Syndrome Network subsite
of the DbI website (http://usher.deafblindinternational.org)
4 http://en.wikipedia.org/wiki/Love
5 http://l .brainyquote.com/quotes/authors/e/erich_fromm.html
6 en.wikipedia.org/wiki/John_Wilmot,_2nd_Earl_of_Rochester
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