On Friday 11th September we rallied outside the Houses of Parliament against Rob Marris Private Assisted Dying Bill . Emotions ran high on both sides of the barriers – those for the Bill (Dignity in Death) and those against the Bill (Not Dead Yet UK). There was quite a bit of chanting but the most winning feature was the big statue of the judge with a needle.
My favourite chant suggested by Bob Findlay was – ‘Choice for some, a loaded gun!’ , ‘Not to die, Assistance to live’
There were quite a number of media people and photographers there.
This is the only article where they actually feature disabled people – most of the media suggests that religious campaigners led the opposition to the Assisted Suicide Bill and our role is being erased, and the enormous amount of campaigning work by disabled activists like Liz Carr, Jane Campbell etc is let out of the accounts
In Coventry the next day, I went to support #RefugeesWelcome rally at Broadgate with my friend Sabir Zazai, the director at Coventry Refugee and Migrant Centre. He introduced me to Syrian refugees now settling in Coventry, like the Ayo family.
Hassan Ayo, an agricultural engineer and human rights trainer, and his wife Fatmah Mustapha, a teacher, have won the refugee lottery. They are two of just 250 Syrians refugees settled by the U.K. so far this year, though the country has pledged to resettle 1,000 Syrians by Christmas.
They are also heartbroken and bitter.
Their admittance to the U.K. came too late for their 14-year-old daughter Sozdar. She died in Turkey on Dec. 4, 2014, just seven days after the United Nations High Commissioner for Refugees confirmed the U.K. had accepted their resettlement application.
“I didn’t lose my daughter in a war. I lost her in Turkey because they refused to treat her,” said Mustapha, 42, angrily.
I was invited by Cap Viaggi and Beyond Healthcare to pay them a visit in Florence where they wanted to try out a tour focused on tourists with health and/or access issues. I was the only wheelchair user, the other members of the group were from other European countries representing senior citizens. Our help was needed, they said, to design the tour and explore possibilities. The three days were available for getting away, so I agreed, intriqued as much as anything else. I had not realised how warm it would be at this time of the year.
I was met at the airport by the lovely Ciara with an accessible van with driver and our hosts and the staff were as warm as the temperature.
The hotel was Best Western Grand Hotel Adriatico, well centrally located with automatic doors and I had an accessible room, well, accessible to a certain degree. The shower was a boxed in area with no grab bars for support or side transfer possibilities from wheelchair. It did have a bidet! Ciara did learn about the logistics of acessibility with me – that having the right equipment is not all that is required but it depends on the access needs of the individual and having them at the right place. Having a personal care assistant is not always the answer either, the structure has to have sufficient space to allow for a second person to support as well….
We had great food (antipasti and fantastic beef) and local wine (Cianti) from the hotel restaurant after introductions from our hosts. They explained their purpose was to offer a worry free holiday for people with health issues, for eg. medical reasons that would prohibit time away from home as a result of missed medications or health conditions needing constant attention like monitoring blood tests. We had a local doctor there who would facilitate care needed. What they would like to offer is a customised package where you can have exclusive visits to the cathedral or a concert. It sounded like the possibility of doing the bucket list in Florence! I did point out that travellers would not like to be called patients even if they have medical needs, something everybody agreed upon. Also the need for accessibility. At the dinner, I sat opposite the very charming Fabio Cacioli who put me to shame by speaking really good English after only having studied it for 3 years.
After breakfast the next day, we drove to a fantastic new and accessible winery belonging to the Antinori family. We had a film on the greatness of the family and then a tour of the cellar and the wine making process. It was gleamingly modern, but still awesome in the cathedral like dimensions of the cellars.
We had some splendid wine tastings and a great lunch at the restaurant there, we were certainly well fed. No spag bog in sight, not in Tuscany apparently.
After heading back to the hotel and two hours rest, we had a guided tour of the city where the history and some of the architecture was explained. But it was a very hot day to be traisping round the city, even if it is such an impressive city! I ve many photos of our walk here but legend has it that if we rub the nose of this pig we shall return! I wouldnt be then, because I could’nt reach it.
While the route chosen was more or less accessible albeit cobbley, I did remark that most of the shops had at least one step to them, which was good for my wallet because even as I was curious at the beautiful wares on display in the shop fronts, I couldnt get in! thus saving me from emptying it.
That evening we were at Harrys for dinner. That was truly a culinary experience – I ‘ve eaten at many places but here we had stuffed corgette flowers with potatoes, Tuscan tomato and bread soup and organic rabbit! I cannot get over the simplicty and the sheer deliciousness of the pappa alla pomodoro.
The next day was the last day, we had a debriefing with our hosts. We made a few suggestions stressing on the need for access, that every person old or young is different and might want different itineraries. We also said that a ball park figure on the costs of such a package trip would be useful, each customised item would of course add on to total costs. Older tourists have similar needs to disabled travellers but they might not have the same requirements or need level access such as wheelchair users. We had not even began on other impairments or those access needs (for blind people for example)
My suggestion would be that they have a few scooters or wheelchairs for those who might be able to walk but not great distances and need places to rest and sit. Some sort of access guide to the city of Florence would be useful as to gauge as whether it s feasible for a visit.
Ciara was mindful of my shop inaccessibility remark and took me to the local supermarket where the staff promptly laid out a ramp as well as the restaurant across the street. Well, perhaps I should have asked at the Gucci shop!
The next day we went full into the first day of the conference with Dan Crow as keynote speaker on How Songkick is using Technology to Change Live Music.
Wednesday became even more exciting when I scooted to Whitehall to join the other anti austerity campaigners for a protest against budget cuts Balls to the Budget and then scuttled back to Covent Garden in time for lunch and to chair a session at the conference. Some friends were arrested. The two parts of my world seem very distant but yet within 10 minutes walk from each other. But my exhibition was on protests in austerity! not so remote after all.
I so wanted to stay for the Art that Makes itself book launch by Paul and Daniel Brown – Brown & Son because I saw the recording of the talk they gave by Watermans – A symposium supported by the Computer Arts Society addressing topics relating to generative art and its collective histories. Here is a very interesting interview too. But I had a union meeting to get to.
Saturday had a different tempo when I joined Petra Kuppers for a meander jointly lead by the wonderful Stephanie Heit (from the US), in the company of Anna Hickey-Moody , her brother visiting from Australia, Andy, and fellow Scrabble player, Antje Lindenmeyer, lecturer from Warwick University!
Saturday July 11th, 2-5 South Bank River Meander, starting at Adopting Britain exhibit, ending at Tate Modern.
Walk along the river with us, and let’s find our hollows, halls, and underpasses. With optional refreshments at Gabriel’s Wharf or the British Film Institute (whatever your flavors of escape). We met at 2 in the Adopting Britain exhibit, Spirit Level at Royal Festival Hall, about immigration and the UK
so here we are at the start at the South Bank where we introduced ourselves and think about drifting and be conscious of the water and think … I think the week has drained me of the ability to think…I wanted to drink and have an ice cream…
here was my tweet:
Floating with the jetsam of London South bank ers feeling the breeze with taste of mango frozen yoghurt on my tongue pic.twitter.com/Qn7xqGd53t
and here we are finishing at the Turbine Hall at the Tate Modern
The day was not finished – it ended splendidly with Zara’s lovely 30th birthday party and I got home after midnight, feeling definitely old and yet a little like Cindrella wondering ‘when was the last tube home on the Jubilee line?’!
Lianna at Transfort for All asked me if I was willing to be interviewed about my experiences of out of action lifts at Tube stations in London one evening – interview to be about 7am the next morning. I gulped and said yes – its a bit early! here is the article in the Evening Standard by Joe Watts. Photos were taken later in the afternoon by Alex Lentati.
my bit –
‘They don’t realise importance of making stations accessible’
Eleanor Lisney, a wheelchair user who lives in North Greenwich, has had problems with lifts three times in the last year.
The worst incident occurred at Westminster. She said: “It was more frightening because it was unexpected. My chair was low on battery and I was scared that I may not have enough power to get home.
“I can’t just trundle off to Waterloo and it’s very hard to get a taxi. You could become stuck.
“Luckily a friend went in and found a member of staff, who took me around a back way to a lift that was only used by workers.”
Ms Lisney, 56, added: “The London Bridge lift for the Jubilee Line is closed until August. It’s really annoying because I like going to Borough Market.”
Lisney, who is studying for her PhD, said: “It feels like sometimes they don’t realise the importance of making the Tube accessible.
“It’s hard enough that so many stations are not step-free. But when the accessible ones are also put out of action it makes life very difficult.”