The Survivor Newsletter: Spring 1999

CONFERENCE ROUND UP

Here is a sample of what was going on behind the scenes at the Conference - with thanks to all contributors. (Ed.)

David Leeks, Chairman of the British Polio Fellowship came with a party of five from the UK. He told me that the BPF has about 9,000 members, and that includes Ireland. Anyone who would like to become a member of the BPF is very welcome to do so.

On arriving in Busaras from the airport, they asked for a bus to the Green Isle Hotel, whereupon they were directed to the Intercity Bus to Cork - which left them off at the other side of the dual carriageway from the hotel! They had to negotiate both sides of the carriageway, under the central reservation barrier, complete with luggage and walking sticks. Such an adventure, and the Conference hadn’t even started! However, they got a very warm welcome in the hotel when they finally did arrive He told me that he will bring home good memories of an excellent conference, the friendliness of the Irish and the lovely hotel.

Rosaleen is Irish but living in England. She has been waiting for 2 years for surgery in the Lane Fox Unit, in St. Thomas’s Hospital in London. Having listened to the lecture on orthosis at the Conference, she saw something that might suit her and she spoke to one of the speakers, Dr. Robin Luff. He told her to get a referral from her GP, and he would see her straight away.

She had heard about the Conference from the ad. in the BPF Bulletin and decided to come over and spend the weekend with her family and attend the Conference.

Dr. Lonnberg, one of our main speakers, said that the most important aspect of the Conference that he was bringing home to Denmark was that here we call ourselves ‘Polio Survivors’, while in Denmark its ‘Polio Victims’. He saw this as a very important psychological difference.

Sandra from Wexford came to the Conference on behalf of her husband - who was at home minding the children! She discovered a whole network of support that she didn’t know existed for Polio Survivors, as well as making many new friends. (Just a note here about spouses/partners, of whom many attended the Conference. We must remember that Post-Polio affects them too, albeit in a different way. Many thanks to Phil, Jim, Delia, Dermot and all the other spouses/partners I met over the week-end - Ed.)

Honorine, originally from Zaire but now living in Ireland, attended the Conference dressed in a beautiful bright-coloured national costume. She spoke a little English, but we were able to have a good chat in French.

Bridie is writing a book abut her experiences and I am looking forward to publishing extracts in the newsletter when she sends them to me. Keep up the writing Bridie!

John, originally from Kettering, N. Hamptonshire, now lives in Tullamore, Co.Offaly. He works with the EU Commission in Brussels as an evaluator and project coordinator on projects for technology for disabled and elderly, as well as social integration programmes. He told me that it was possible to get funding through the EU and he would talk to Jim about the ways and means of doing so.

He felt that the social aspect of a Conference such as this was where you learn the most, by sharing experiences with other Polio Survivors. No-one knows more about what goes wrong or what helps them, as those who have the same problems as yourself.

In the Bar (of course) we met up with Frances, who recounted how her holiday to the Canaries was a disaster because she did not do enough research into the accessabiity of the area. She just went on the advice of the salesperson at the Holiday Fair who said that there were ramps everywhere. Ramps for buggys, maybe, but no toilet facilities for wheelchairs. She spent a very uncomfortable two weeks, and took the matter up with the solicitor on returning home. Unfortunately, things didn’t turn out too well, but she did learn that when you go on holidays with a wheelchair, make sure the accommodation is accessible, give the hotel the width of your wheelchair, ask more questions and demand equal rights - which is your due.