Southampton Centre for Independent Living

SCIL has been working hard over the past couple of months to develop its presence on the Internet. Although we are very aware that some people do not have regular access to Internet, we feel that it is important that SCIL continues to promote itself as a leading voice within the Independent Living movement and the website is one way that we can do that. 

 It is also important that the SCIL website encourages interactivity with its readers and therefore we have recently launched 2 new developments:

SCIL Chat Room

SCIL has now its very own chat room for any issues relating to Independent Living, Direct Payments, Self Directed Support etc. Anyone can participate no matter where you live. We hope to host various events on there such as an online Direct Payments Peer Support Group. Other ideas would be welcome.

Also we might be able to use it to network over various campaign issues on a national basis. We will be shortly paying £15 per month for the chat room so it would be good to see if we can find some good uses for it. Anyway, you can try it out by clicking here 

SCIL Message Board / Forum

SCIL has also launched its own message board. This means that you don’t necessarily have to be online at the same time as other people. You can post your thoughts / comments / queries on the board and other users can reply at their leisure.

You can access the message boards by clicking here.

At the moment, we have a board for General Chat and News, Direct Payments, Campaigning and Travel and Transport. Other suggestions would be welcomed. 

With all these developments, we are learning as we go along so please do let us know if you experience problems or need assistance. You can contact Robert on 023 8020 2639 or email Robert@southamptoncil.co.uk 

I have worked at SCIL now for nearly six years. My first job working as a Work Support Assistant was also my first experience of working with people with different types of impairments.  I am now working with Maureen Harris who is a Direct Payments Support Worker and supports many Disabled People, particularly those who have mental health issues.

During the last six years, I have therefore met a wide range of people who have either been born with an impairment or acquired an impairment during their life.  My children are now all grown up and slowly I am becoming ME, something which is very new for me personally as I had my family at a young age so did not experience finding out who I was, like other young people do. 

One of my hobbies is Walking which I really enjoy. Whilst out walking, I decided to really challenge myself. My first goal was to do the London Moon Walk. I applied but sadly did not get a place this year due to it being very popular. This did not deter me but made me more determined to do something not only to test my own capabilities but to do something worthwhile.

My challenge is I am going to walk up Kilimanjaro in October 2007. I will be raising money for an organisation that supports people with cancer. I lost two grandparents and my mum to cancer so it is very important to me.  I will also be raising money for an orphanage in Moshi which I will be visiting in Tanzania. I have realised that I am a really fortunate person in more ways than one. Many people in this country takes things like food, water, homes, health care and education for granted but people in Tanzania are extremely poor and yet work very hard for the most basic of things. 

I know this challenge is going to test my physical and mental abilities to the limit. I will be encountering extreme temperatures, physical exhaustion, not to mention altitude sickness, which can be life threatening. But this does not deter me, I am going to the summit.  I am training very hard at the moment at the moment, walking between 20-30 miles a week (the more hills, the better!) and going to aerobic classes to increase my physical fitness.    

I have now completed my first fundraising event which raised over £1000 and have a few more planned before I do my climb.

I will keep you informed of my progress and let you know how I get on, once I have done the expedition.

This post was written by Sharon Coe.

With Christmas finally out of way, many people’s thoughts turn to where to take their next holiday. Jackie Whitehead, who works for SCIL, recounts her experience cruising round the ‘Med’ with her parents who both use wheelchairs.

 We arrived at the designated dock gate to find our ship had been “moved down a bit”. Not a big deal until you realise we were at Gate 30 and had to go to Gate 8 at the other end of Southampton, and that there were five adults, (we had a driver) two wheelchairs and three enormous suitcases all in one car! 

When we finally found the right ship we were told people in wheelchairs and buggies, along with their helpers, were to be boarded first. Looking at the huge queues of waiting passengers it sounded too good to be true, it was! We and a couple of dozen others found ourselves directed to an area on our own where we left to fight it out for a place in a queue for a boarding pass.

Having done battle with a particularly determined lady in a motorised buggy we won and were directed to a ‘special’ boarding gate. Later on we discovered that most of the passengers were welcomed on board with fanfares, photos and friendliness, my mum was met with “hang on love, we’ll get you on board in a minute”. After ten minutes of sitting on a draughty Southampton dock my mum and dad were hauled up a lonely gang plank by a couple of workers wearing fluorescent yellow coats. By this time I was cross and my mother was giggling, not with hysteria but with genuine amusement.

The real fun began the minute we boarded the ship but I don’t mean deck quoits and salsa lessons. Eagerly I forged ahead of my husband and father pushing my mother confidently along a corridor to our ‘stateroom’ (cabin to you and me). My confidence was a tad previous because I had not counted on, nor noticed, a raised divider looming out of the carpeting. It is worth mentioning here that these occurred at regular intervals through out the ship and were a continuous hazard for wheelchairs.For us at that moment it was a bit like hitting an iceberg and my mother, destined to sink, shot up and almost out of her chair. She was, however, saved when I grabbed her with one hand and shoved the wheelchair under her with the other, effectively scooping her up before a titanic disaster struck.

All of this, along with a miniscule ‘stateroom’ which meant we had to leave both of them outside in the corridor, the wheelchairs not my parents, overly narrow doors and some other minor hiccups, actually did very little to spoil what turned out to be a wonderful holiday.

However, please Mr. Cruise Ship Director when you build your next floating hotel spare a thought for my mum and dad and make sure they can cruise with all the dignity and freedom they deserve. 

In the final report on the European Network for Independent Living conference in Valencia, we report on the work of ECEPA and the Strasbourg Freedom Drive, as well as promoting future European events in 2007.

Adolf Ratzka from the Independent Living Institute in Stockholm spoke about the European Centre on Personal Assistance (ECEPA) project which aimed to create a Europe wide policy on Personal Assistance.

The policy aimed to define what a Personal Assistant is and what are the key elements to any national Personal Assistance model. The key elements are as follows:

1. Eligibility - Eligibility must be granted solely on the basis of a person’s need of practical or, if applicable, intellectual or emotional assistance by others in the activities of daily living. regardless of cause or medical diagnosis of one’s disability, a person’s age, employment or insurance situation and regardless of income or property of the recipient or the recipient’s household or family.

2. Needs Assessment - The needs assessment must: take into account the person’s current whole life situation and enable recipients to take their rightful place in family, neighbourhood and society with all resulting duties and responsibilities including the culturally customary responsibilities within the family for household, care of small children or aging parents, assistance at the work place, during leisure time, outside the home, on travel and during vacations.

3. Appeal Procedure - Clear, inexpensive and effective appeal procedures must be in place to challenge needs assessments, if necessary, in court.

4. Direct Payments, not services in kind - Cash benefits or Direct Payments are indispensable for users’ self-determination. With the funds recipients must be able to purchase services from the providers of their choice and/or employ their assistants, including family members, themselves.

5. Payments’ amount independent of service provider - Amounts are to be based solely on assistance needs and not on the service providers’ identity. Persons who live in the community and employ their assistants themselves must receive payments in the same amount as if they lived in a residential institution or received community-based services.

6. One central funding source - Under the policy one and the same national level funding agency has to cover all recipients and all their activities. Each recipient must not have more than one agency to deal with. In case several sources contribute, one of them is to be the guarantor for the other sources.

7. Payments for personal assistance as legal entitlement - Recipients must be legally entitled to receive payments for personal assistance irrespective of the funding body’s financial situation.

8. 100 percent coverage of personal assistance costs - In order to facilitate recruitment of personal assistants, Direct Payments must cover all costs of employing a person including such costs as union wages, unsocial hours and over time, workers’ social insurance, accident and liability insurance, pension, vacations, maternity leave, sick leave, training (if deemed necessary by the user); the costs of accompanying assistants around town (e.g. for food, entrance tickets, transportation) or when travelling (e.g. for airfare, hotel room, maintenance); payroll administration and audits. In order to enable users to reap the maximum benefits from Direct Payments for personal assistance, benefits must include the costs of user training and peer support.

9. Constant purchasing power of payments -The level of cash benefits must be annually adjusted to avoid purchasing power losses and to guarantee that payments cover the full costs of the assessed number of assistance hours.

10. Recipients are accountable for the use of Direct Payments - Recipients must periodically account for use of funds. Periods should be 12 months or longer.

A pan-European policy on Personal Assistance was also one of the key demands that the Strasbourg Freedom Drive took to the European Parliament in 2005. The other key demands are: Action to address the growing number of Disabled People being institutionalised, More effective representation of Disabled People in European Social Inclusion strategies, The right to gain Personal Assistance services regardless of cost, Promotion of the appropriate implementation of the philosophy of independent living,  5% of Overseas Development Aid to be given to community development projects for disabled people in developing countries, Action to highlight and address the significant human rights abuses that many Disabled People experience and the right to retain personal assistance funding when travelling, regardless of length, or purpose of journey.

Don Bailey from Dublin CIL showed an excerpt of their DVD that they made during the first Strasbourg Freedom Drive in 2003 and informed delegates that another Freedom Drive was planned for September 2007. The Freedom Drive consisted of meetings with local MEPs and a march through Strasbourg to the European Parliament. This is linked with attending the Disability Intergroup with MEPs from across Europe to discuss our key demands.

It was generally acknowledged that the event was very motivating however there was concern expressed that many of the key demands were outside the remit of the European Parliament. Despite this, it was felt important that Members of the European Parliament were aware of the issues as they did have influence over topics such as geographical mobility within Europe.

SCIL are hoping to send a delegation from the UK on the 2007 Strasbourg Freedom Drive, so please get in touch if you are interested in getting involved.

ENIL are also planning another conference in Valencia in April 2007 which will be a good opportunity to try and progress many of the issues discussed and hopefully further the aims and objectives of ENIL. In order to promote discussions between CILs across Europe, ENIL has set up an internet discussion list which it is hoped will help all the countries keep in touch in between the various face to face events and meetings.

The conference in Valencia provided a great opportunity to kick-start the work of the new ENIL Secretariat and hopefully will enable ENIL to take a strong lead in developing Independent Living policies across the whole of Europe. 

Valencia in Spain was the location for one of the largest gatherings of Independent Living activists in many years. Organised by the European Network for Independent Living (ENIL), delegates from 14 countries met for 3 days between the 2nd and 4th November 2006 to discuss a whole range of issues regarding independent living. In this short series of articles we hope to give you a flavour of some of the issues that were discussed and encourage you to get involved in future events that are planned in 2007

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Valencia is the 3^rd largest city in Spain after Madrid and Barcelona and will play host to the America’s Cup in June 2007. Valencia is a city of two halves with a beautiful ‘old’ town and a more modern commercial area. Between these two areas, a grand and imposing City of Arts and Sciences has been designed by Santiago Calatrava which comprises of an IMAX cinema, science museum, a large oceanarium and a new opera house reminiscent of Sydney Opera House.  

The conference was entitled ‘CIL = Empowering: We Make The Change’ and several influential speakers from the Independent Living movement spoke, including Adolf Ratzka and Colin Barnes. The meeting was opened by Alicia de Miguel from the Ministry of Welfare of the Valencian Regional Government who was instrumental in securing a Secretariat office for ENIL in Valencia for the next year. Alicia de Miguel confirmed the Valencian Regional Government’s commitment to the independent living philosophy and hoped to work with ENIL to promote this cause.

John Evans, the President of ENIL, welcomed the setting up of the Secretariat in Valencia and said ‘For the European Network on Independent Living (ENIL), the main aim of this meeting is enhancing the European CILs’ network, in order to find common strategies to develop Independent Living and to strengthen the IL movement in Europe. That’s why ENIL has brought together those IL activists working in CILs from all over Europe: to exchange ideas, experiences, and good practice. It is necessary to strengthen our links now when the Commission is keen on supporting and developing community living based alternatives and Independent Living as an alternative to institutions. It is also good at the moment to be united when many EU member states are cutting back the resources supporting disabled people led organisations.’ 

Representatives from ULOBA, based in Norway, presented a new book that they had commissioned called ‘Folk’. This book contains strong images of Disabled People along with quotes from people committed to human rights for all

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You can see a preview of the book here  

Javier Romanach who is the Co-Founder of the Independent Living forum in Spain, introduced a new concept that they are working on in Spain for ‘Functional Diversity’. ‘Functional Diversity’ is a different way of looking at the issue of impairment. There are a range of aspects to the way people function. These include Aesthetic, Physical, Sensory, Social, Emotional, Cognitive and Spiritual. Each of us have a different capacity to function in each of these aspects, for example, an athlete or dancer may have a very high physical capacity but an average cognitive capacity. A scientist may be the opposite. Similarly a person labelled as having impairment may have low capacity in a certain aspect but high capacity in another aspect of function. Functional diversity is therefore a way of thinking that takes away the boxes of “impaired” and “normal”. It allows all people to share in the complex array of human function and benefit from their strengths.

Javier’s presentation raised a number of issues. Some delegates thought that the concept was putting the focus back on the individual rather than concentrating on changing society. Other delegates voiced the concern that it was harking back to the days where people argued that everyone has a ‘disability’ in one way or another. This of course denies the impact that society’s reaction to an impairment has on whether a person is labelled as ‘disabled’ or not and thus discriminated against.

This discussion illustrated very well the very different cultural backgrounds the countries represented came from. Throughout the three days, there was much discussion around language – functional diversity vs. impairment, citizens vs. users, Disabled People vs. People with Disabilities. Despite many common themes developing throughout the three days, the language of the Disability movement remains a highly debatable issue.

More news from Valencia can be found here

In June, we had a volunteer from Japan work at SCIL for three weeks, to discover more about the Disabled People’s Movement in the UK. Asami visited many other places in the UK and in Europe after visiting us. Asami has now returned to Japan and sent us this article about her time in Southampton:

I visited UK from Japan to find out about  the issues around independent living of Disabled People. I have visual impairment myself and have been working at small Disabled organization in Japan. 

From June to July, I spent 3 weeks with SCIL and had a great experience there.  I accompanied some home visits, attended the meetings and events, heard about their various work and discussed issues around Disabled People etc. At first time, I was a little nervous with new environment but people at SCIL are friendly, so I felt at home very soon.

I enjoyed most of the time and found some interesting and new ideas. For example, I am impressed that quite a few Disabled workers are working as a support worker but having a personal assistant at work (Access to Work)  They can get support to go to work or for the home visit or to do paper work etc. it seemed a good role model and very encouraging. In Japan, we have a scheme similar to Access to Work but because of very limited resources, many people are not able to get the support they need.

Also, it was interesting to know how disabled people can use Direct Payments as we don’t have such scheme.  I had a chance to get a feel of the challenge to Disability Discrimination and promote user involvement. On the other hand, it seemed that there were same situations that we are facing in Japan.

Getting care is becoming difficult and you have to pay towards the care even if you have not enough income and so many people remain at home, and it is difficult to participate in the society. However, it was great that we were able to share our experience each other. I am sure we have a same goal.

We need to keep working for all disabled people to be able to live independently and make inclusive society. Thank you again. I have got back to Japan on 22nd September with great memories. It would be great if SCIL could come to visit us in Japan someday. I hope to keep in touch.  

I last visited Paris in 1992 and did not find it the easiest city to get around in using a wheelchair. It was therefore with some trepidation that I decided to have a short break in Paris. Why did I choose Paris - well I was mightily impressed by the Eurostar when I used it to travel to Strasbourg via Paris last year. The 2 wheelchair spaces on each Eurostar train are located in First Class and Eurostar gives the wheelchair user and their companion a substantial discount on the train ticket. You are also treated to a 3 course meal with wine and champagne. Now that can’t be bad.

The Eurostar arrives at the Gare Du Nord which is about a mile from the centre of Paris, however there are some fairly regular accessible buses that pass the Gare Du Nord and take you into the City Centre.

We stayed at the Novotel Paris Les Halles which is very near the Louvre, Notre Dame Cathedral. and the Georges Pompidou Centre. It is not a cheap hotel however the rooms were spacious and the bathroom had plenty of room for a wheelchair user. The hotel bar was on a raised platform up 3-4 steps with no ramp, but with at least six bars / cafes and restaurants just outside the main entrance, it wasn’t an issue.

Most pavements had dropped kerbs and tactile paving, however most traffic crossings did not have an audible signal when the crossing light was green, so people with visual impairments may require more guiding than they would in the UK.

At least 50% of shops and restaurants had at least 1 step at their entrance, even some of the major stores like GAP and McDonalds. Most bars / cafes had outside seating areas so if you are a wheelchair user, I would not recommend Paris in the middle of winter. 

It was also a little discouraging to note that virtually every ‘obviously’ Disabled Person I saw was either American or English. This accounts for why Disabled Access only seem to have been actively considered in the tourist areas.

The Louvre is an excellent case in point. It is completely accessible, they publish a comprehensive access guide in French and English. They also provide audio guides and have a tactile gallery for people with visual impairments.  The variety of exhibits there was bewildering and if you are a fan of art, sculpture, history or the ‘Da Vinci Code’, it is a must-see.

Of course, the number one attraction in Paris has got to be the Eiffel Tower. Wheelchair users can only go to the second floor but the views are still spectacular.

Compared to 1992, access in Paris is a lot easier but it still lags behind other major cities in the UK, Europe and the USA. If you enjoy the pavement cafe culture, people watching,  magnificient architecture then you’ll love Paris

If you are considering visiting Paris, I would recommend the Access in Paris website. It has lots of useful information and although the new edition of their guidebook is not out till 2007, if you contact them with specific information, they will be happy to oblige. I must declare an interest as I was involved with the Access Project for about 15 years and was one of their surveyors for the London, Paris and Israel guidebooks. The strength of the guidebooks was that we tried to simply describe the barriers at each location and let Disabled People themselves decide what they could or couldn’t manage.

Paris may not be the most accessible city in the world but if you’re not keen on flying but still want to sample some European culture then give Paris a try.