WCCE8 2013 – Impressions 1

What did you think of the conference?

This is a question most of us who spent three days in Munich last week will have been asked at least once.

What did I think of the conference?

This is a question that I have asked myself a hundred times this week and a question that I have discussed with several people too.

I have read a few messages online, usually expressing pleasure and offering thanks to the organizing committee for a great time, with a few comments on photographs. There has been little real discussion.

The only messages I have read that offer something more are from Ralph Strzałkowski on his blog and I thank him for his insights, especially here –

http://blog.lawyeronwheels.org/2013/10/the-peto-problem.html

And me, what can I contribute? I will slowly add my own opinions, ideas and impressions here on my blog.

Are first impressions lasting impressions

One of my first impressions of the 8^th World Congress for Conductive Education involved Ralph, who I had promised I would look out for, if I could find him in the crowd of over 600, and welcome him to the event.

Ralph was actually one of very few people who I did find in the sea of faces. Someone shouted ‘Hello Susie, I know you from your blog’, across the top of heads at the very same spot that I met Ralph, but I did not see her again. I hope that she gets in touch!

Yes, I knew personally a lot of people attending the Congress, but I also knew many more through Cyberspace, but I hardly remember speaking to anyone as most of the time I was running from one room to the other. I was rushing off for my own workshops and presentations, to those of people I had mentored or to those of my colleagues I was determined to hear some presentations that I had picked out for my in-between times, and now as I think about the question – ‘What did I think of the Congress?’, I am actually surprised at how many I actually managed to get.

I had no idea what time Ralph would arrive in Fürstenfeldbruck but I literally bumped into him in the huge crowd that arrived just before the opening ceremony. A mass of people were coming in and out of the main entrance foyer and amongst them I spotted Ralph. We made our way to register at a desk that was far too high for wheelchair-users to feel comfortable at. I witnessed many times over the first two days how the Congress team had to walk around to the front of the desk to give assistance with badges, book-bags and tickets.

As Ralph had informed us on his blog a few days earlier in a bulletin from Poland, he had lost his voice. Opposite the registration desk there was a café and as there were no drinking-water facilities, apart from on the various stages and presentation rooms, I ordered Ralph a cup of herbal tea. I did the ordering as once again it would have been virtually impossible for Ralph to have reached the counter from his wheelchair.

By this time Ralph had been at the Congress centre for about ten minutes. We were doing quite well, having already registered and bought tea, albeit from two surprisingly high counters considering that we were at a conference for people with disability, i.e. some wheelchair-users.

Looking around me, through the crowds, I tried to solve the next problem. I had a hot cup of tea in my hand and could see no suitable place to put it down so that Ralph could drink it. The space between the café and the registration desk was small and crowded. It was filled with buffet tables, the type that one stands at, or leans on, to eat and chat, if one is able to stand and lean while chatting.  If you were not able to stand and lean, like Ralph and many others at the Congress, there were few places to enjoy the coffee breaks or to share a chat. At the beginning of the Congress the only tables at the appropriate level for wheelchair users to eat and drink at were the trade stands, so it was to one of these that I made a beeline, the one just beside the main hall so that Ralph could nip in to the opening ceremony after his refreshments.

I am not sure whether the stand-holder was at first very happy with the situation, probably anticipating a string of wheelchair-users using his lovely laid out table for coffee break, but was very understanding of the fact that before I could mention the problem to the organisers there was no alternative.

At lunchtime there was still nowhere to sit to eat. Whether wheelchair user or weary traveller all one could do was lean. One friend, George, the author of my latest book, who is able to walk but not stand for a long time, was given a stool to perch on at the high café counter. Later in the day, by which time low tables had appeared, he told me what a conductive task it had been to get onto that stool to eat his lunch and although pleased by his success he was disappointed by the fact that there had been a need to ask – ‘Where are we supposed to eat and drink and chat?’

What else did I think of the conference?

There were a few highlights but more about them later. The things that have leapt out of my memories first are those things that should never have happened.

I was a carer and partner for twelve years. I lived my life for all those years asking questions like George and Ralph had to ask, and spent much time helping to find answers.

I am not only aware of the problems that all too often arise, I am also aware of how sad it makes the disabled person feel to once again be excluded from what may seem to the outsider as tiny matters. I am also aware of how sad it makes the carers, who instead of enjoying the moment are off again solving problems in order to make the day run smoothly.

It is exhausting and can be upsetting when this is the daily routine, especially when it happens somewhere where it is least expected.

Another question

Something else that I asked myself during and after the conference is –

‘Were people with disability not expected to go up on stage?’

Had no one told the organisers that some presenters would be wheelchair-users, or people who found steps difficult? Had no one discussed the need for ramps in rooms where there was a stage with steps?

Had no one thought that perhaps someone who was unable to negotiate steps might spontaneously wish to go up on the stage to receive or present, a prize or gift, or just to chat to someone?

There was no access to the main stage from the floor. If you knew before that you had to be on stage at a specific time then you could use the back entrance, but if you were asked to go up from the floor you could not do so, despite there being ample place to have built a long ramp.

In the smaller room with a stage there was no possibility for wheelchair-users to get on to the stage at all and it was in this room that Ralph was invited to speak as a keynote speaker.  It was also where one of my very first clients Franzi Walz, now 21, was to present her conductive life-story, together with a young conductor, Eszter, both of them speaking publicly for the very first time.

For some reason that I do not know of, it was decided that Ralph would present from the floor, a table was set up and eventually a microphone stand was found. Ralph’s presentation was really good but I am sure Ralph would have enjoyed it more had he not been excluded yet again from doing the same as everyone else, especially at this a conference for people with disability.

For Franzi it was a different matter, she had a band of supporters around her who insisted that she should sit up there on the stage. I think we would have lifted her wheelchair and all if need be, but it was up the steps that she walked with several conductors, friends and family helping her physically and mentally. It was only then that she was able to tell her story from centre stage.

She and Eszter both did extremely well and the strenuous task of walking the steps to the stage added to, rather than distracted from, the presentation.

But it could have been different.

Increased spasticity in her body could easily have made speaking difficult.

Franzi’s conductive lifestyle and well-being most certainly contributed to her success, and she left the stage, surrounded by well-wishers, feeling very satisfied and proud of her performance.

It could have been a different story; she could have left that room feeling very unhappy at being excluded.

The problem with tables to sit at to eat and chat was solved promptly, but the high café and registration desks and the stages, remained inaccessible for the duration of the Congress. 

If we cannot get it right then how can we expect others to do so?

I hope that lessons were learned.

Notes

Ralph Strzałkowski, Gainesville, United States –

What I’ve learnt from Conductive Education: from my childhood with cerebral palsy to independent adult life.

Franziska Walz and Eszter Torma, Nürnberg, Germany –

My journey to independent living with Conductive Education