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  • : freewheeling
  • freewheeling
  • : Blog on being a disabled person, different cultures, diversity, equality, disability, travel, being diaspora Chinese and disabled travel.
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Xiaolu Guo
A Concise Chinese-English Dictionary for Lovers
A love story - cultural differences, misunderstandings and yes, I see what she is saying.
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Su Tong
Binu and the Great Wall


Binu and the Great Wall

Binu And The Great Wall is a wonderful myth retold in the words of Su Tong, the author of ‘Rice’.  The myth of Binu and how her tears washed away the Great Wall have been passed down through the ages. It is a tale of hardship, brutality and undying love. Su Tong’s version of the myth, brings to the reader the harshness and brutality that led to the constuction of the wall and the terrible effects it had on the common people.

7 août 2011 7 07 /08 /août /2011 15:09

chair_up.jpg

 

I have not used this blog so long I had to come back and familiarise myself with it again. And using this blog because a wheelchair review would not fit the remit of any of the other blogs that I do - this is my personal blog, I ve had this for more than 6 years. I think with social media - I ve slipped into the habit of leaving little messages when it came to the personal sphere in Facebook and Twitter status messages. Blogs require more work - and personal stuff didn't seem so important.

 

Yesterday while I was in Boots a lady approached to say hello because I am the first person she's seen who has the same chair! And that reminded me that I had said I would write a blog review about my new power chair.

 

Using google with a cursory search, I found one review online. This unnamed reviewer writes:

 

 

".... I really surprised the lady at Sunrise Medical that I talked to. It is the first time that a publication like ours has approached them for a review item I guess. The Sunrise Medical  Marketing Manager, Ms Jane Elsworth, was very helpful in locating and securing a demo model for me to try out for a few days to review, even though this is a very popular model at the moment, is brand new, and she is a very busy person right now. She put us in touch with Anderson Medical & Mobility who sent Stewart Taylor over to show us this new chair. Stewart was over three times in fact, once to demo the chair and once to drop one off with me and adjust it to my size so that I could test it for a few days then the day he picked it up to take over to someone else. They are very busy people and this chair is much in demand, for good reason as you'll see."

 

 

With hindsight, I see my mistake

  • - I did not ask for a test
  • - I did not keep the chair long enough for a proper test

My fault. I needed a replacement powerchair. I was too cocky I thought I ve used powerchairs for most of 27 years and I ve used Quickie chairs for the last 15 - manual and powerchairs - so did I need to test I thought. My local wheelchair services ha given me an assessment, my consultant had written a letter to say that I needed a riser wheelchair. My supplier (Midland Mobility) told me he had just the thing in mind - a  Sunrise Medical Quickie Salsa Mid Wheel Drive powerchair and he came around with the salesman.

 

To be honest,I was impressed by the extremely compact turning circle, allowing for great indoor manoeuvrability. A narrow width makes it easier to navigate through doorways and confined spaces. With its mid wheel drive technology, there is a suspension which makes bumps less 'bumpy' and the seat can be adjusted to tilt up so as not to fall out. Of course I like being able to reach things but find it takes a long time for the seat to go up in height. Joy of joys I can now sit up for the conveyor belt sushi bars at Japanese restaurants and at pubs not to mention being at the same height as people you do not want to look down at you! The downside? It takes an awful long time to reach the dizzy heights! it goes slowly when you re up there - there's a built in safety lock on the speed.

 

But I ve had it for a couple of months now. After a week or so, I sent it back because I thought it was odd that it should lurch and they found a screw (?) missing. They thought that it must have been missing form the start because it was not something that could have work loose. I became nervous. 

 

Problems with it:

  1. 1) no manual with how to use instructions - there were no instructions to go with it. I would have appreciated such a guide/manual. It would have also been good to have gone for a good 'ride' outdoors. The controls are very sensitive. Tim tried to show me how I can go over rough terrain.
  2. 2)the pivotal type see saw reaction (with mid wheel drive) when you re going up or down a ramp - like on a train. This is very disconcerting - I had no warning and nearly fell off the ramp at Euston a couple of times. The trick is to go down to the lowest speed when you going down a ramp and tilt the chair seat up - but not when you go up the ramp.
  3. 3)the creaks and sounds that come and go with no rhyme or reason but which worry me. Any sound unaccounted for makes me uneasy.
  4. 4)The batteries do not seem to last as long as my old Quickie - this machine goes to yellow bars after a day's bombing round town use.
  5. 5)My foot pedal is already losing paint at the edges and the hinge is loose.

 

But I really like it. I can recommend it but suggest a real trial before buying it by using it in different terrains -its good for climbing slopes.I like that the arms can be moved up, that I can tilt the chair and change the pressure points. I like the lights. I do have head rests and rear mirrors - apparently this is mandatory when travelling in public transport but I found that they really stick out and get in the way of turning corners- such as monoevring into a tight spot on the bus.

 

Coventry wheelchair services got me in touch with Tim Cox who says he's passionate about this particular model. He could not tend to my fears the first time and said I had to go back to the dealer. Whan I was still not convinced and rang him again, this time he came out to see me. We took the train together to Birmingham Internatiional and back and I showed him my nervousness with the ramps but he told me it was a very stable chair and that I just needed confidence. He then thought that the ramps used on the train might not conform to the standards for ramp incline for wheelchairs. (Yea, I thought - try telling the rail service that they have to change all their ramps!) He did say I should have had more instruction about how to use the chair by the people I bought it from.Could I have asked for them to have let me have it for a couple of days? I am not aware if such rights. In buying a car, are you not allowed to go off for a spon before you make a payment?

 

I am getting used to driving it. I need to have more confidence in it but that can only be earned. Would be good to know what are other people's views on it.

 

http://farm7.static.flickr.com/6126/6012273662_7c57d0dca0_o.jpg

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21 décembre 2008 7 21 /12 /décembre /2008 02:21
I ve had been chatting with friends back home in Malaysia - because its the Christmas festive season and because class of '76 had a reunion and I was not there.

I grew up with many of my classmates, from age 7 we were in the same class until 17/18 years old. We knew each other's families and our siblings also grew up together. We might all have gone our separate ways or even countries abroad but we would not forget those formative years. I was in a mainstream school, my colleagues here in the UK now tell me I was lucky not to have gone into a special school.

Where I came from, I had to tell them, there were no special schools. It was not like I had a choice. Special schools would be equivalent to a charity orpanage placement. Thank God my parents did never leave me to go into one of those places. My parents wanted me to have as high an education as possible. However this means that I had never had any role models, my classmates accepted me and tried to beinclusive as possible but that did not mean I was often often left not being able to join in to PE classes or extra curricular activities.

To come back to present reunion, I find it more and more difficult as I get less mobile as the years get on to be able to negotiate the barriers at home. I find it difficult to plan a trip home even to see my family  I am fiercely in need of maintaining the independence of movement - I use a power wheelchair which means I can more or less wherever I wish to go - dependent on the accessibility of the built environment.  In Malaysia, I cannot see it easy to use a wheelchair on my own. In fact it is well nigh impossible. The built environment is hostile with practically no ramped access, dropped curbs or wide doors. There are many uncovered monsoon drains and steep steps. My colleagues in Malaysia such as Peter Tan have much reason to lament.

As I get into inclusive travel, I do not feel I can recommend Malaysia to other wheelchair users - which is a shame because I would love to. I am not even sure I know if Singapore which prides itself as an accessible and wheelchair friendly capital in S E Asia.
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25 février 2008 1 25 /02 /février /2008 00:19
Today I read about the plight of Siaron West and Peter Rees and my heart went out to them,  Siaron wrote :

My name is Siaron West, I have been married to Peter Rees for 12 years and we have a 7 year old daughter Catrin. 

Pete was diagnosed with Primary Progressive Multiple Sclerosis in 1995 and for the last 6 years has been severely disabled whereby he is confined to a wheelchair with a catheter and a feeding tube into his stomach.

He currently has a small amount of movement in his left hand only and communicates by shaking or nodding his head.

When he is unwell or tired he cannot operate a remote control for the bed, chair or television and is totally unable to communicate.

His condition is terminal, he continues to deteriorate and it is uncertain how much longer he will live.

I provide the majority of his care (medical, nursing and social) but we have some assistance from Home-care (Social Services) and the Independent Living Fund (ILF).

Home-care can provide personal care in the form of 2 carers to wash and dress Pete in the mornings and to put him to bed at night along with two 15 minute check calls during the day. 

The Independent Living Fund is funded centrally by the government and its aim is to keep disabled people in their own homes by providing the means for them to employ their own carers and live as independent a life as possible. 

The ILF money enables us as a family to live as normal a life as is possible under the circumstances. We use the ILF money to pay for sitters so that I can work, socialise and take Catrin to and from school and do other activities with my daughter.

I also run two children’s and youth clubs on a local estate.

Both Home-care and the ILF are means tested and we pay a certain amount towards Pete’s care.

This care package has been in place for the last 6 years, it works very well and all we want is for this to continue.

Social Services are keen to reassess Pete as they feel that his care should be funded by the NHS.

This would be free to us and not means tested but would mean that the total cost for his social care would have to be met by the NHS and not the Local Authority.

This means that we would lose both Home-care and the Independent Living Fund and may result in Pete having to be placed in a Nursing Home which is likely to be more expensive for the tax-payer.  

I and Andrew Rees (a friend of my husband) have Enduring Power of Attorney for Pete which means that we make decisions for Pete based on what is in his best interests.

We feel that removing Pete’s current care package would be detrimental to us as a family for the following reasons

    * Pete is terminally ill and any change will cause him great distress which may cause him to deteriorate further

 

    * Pete’s carers have all looked after him for at least 6 years and have an amazing ability to understand his needs despite his extremely limited communications skills

 

    * The NHS has a limited ability to fund a social care package and so the best they could offer would be equivalent to what Home-care currently do ie personal care with up to 5 visits a day and would not be able to fund sitters. 

 

      This means that I would be unable to work or socialise, take my daughter to and from school, spend time with her outside our home or run children’s and youth clubs. I would have to ask friends to help out whenever I left the house for any reason, even to buy groceries.

I have proceeded in the proper way through Cardiff Council’s Complaints Procedure with the following outcome 

            STAGE 1  No response within the required 10 working days. When prompted a response arrived but  Pete’s surname was incorrect and did not address any of the issues raised.

            STAGE 2 Report by Investigating Officer from the council took 6 months rather than the required 5 weeks. Upheld 3 out of my 5 complaints. One couldn’t be addressed as the social worker involved had left the authority and was subsequently investigated by the Care Standards In Wales Agency. 

            The final complaint ie that the assessment was not in Pete’s best interests was responded to with a threat to call a Protection Of Vulnerable Adults Case Conference with the recommendation that Pete be made a Ward of Court if I didn’t agree to an assessment.

            This basically means that Social Services would make an allegation that I was abusing Pete by not acting in his best interests and therefore shouldn’t be allowed to make decisions for him. As a GP it would automatically trigger a POVA Case Conference to investigate me professionally and a Child Protection Case Conference would be called for Catrin. As well as affecting my work and family life a POVA would also mean I would be unable to continue my work with children and young people.

            STAGE 3 An Independent Complaints Panel made the following recommendations

                + That the paragraph containing the threat of a POVA be retracted from the report

                  + That a letter be sent to me within 10 working days of receipt of the report by the Director of Social Services

                  + That this letter should confirm that there have, at no point been any adult protection concerns and that the Authority apologise fully and without reservation for the distress, alarm and threat caused by this statement (ie the mention of a POVA)

            OMBUDSMAN I have requested from the beginning and at every stage that they investigate but the Ombudsman claims that they are not allowed to intervene until the complaints procedure has been completed. 

            When I had not received the recommended response from the Director of Social Services within 10 working days I referred this case to the Ombudsman and their investigation is ongoing. 

            The Ombudsman, however has no legal power to challenge or change Cardiff Council’s decisions.
            

            THE SITUATION NOW:

    * The director of Social Services, Neelam Bhardwaja has chosen not to follow any of the recommendations made by the Independent Complaints Secretariat which is the final stage in Cardiff Council’s own complaints procedure.
 
    * She has given me 2 weeks to agree to an assessment otherwise Pete’s care will all be withdrawn on the 4th March 2008.
 
    * I have asked for more time but this request has been refused.

    * In my communications with the Local Authority and the Local Health Board they have made it clear that the outcome of the assessment will almost certainly be that Pete will meet the Continuing Health Care Criteria and that responsibility for his care will pass to the NHS.

      * We will then lose all of Pete’s carers who have looked after him for the last 6 years.
 
    * Cllr John Dixon has so far refused to meet with Julie Morgan and her constituents (of whom I am one) to discuss these issues.
  
I have tried to utilise the media to bring this case to wider public attention so please use the following links for more information:

Radio Wales 21st Jan 2008

Link to summary of broadcast: http://www.bbc.co.uk/wales/radiowales/sites/eyeonwales/updates/20080121.shtml

South Wales Echo 2nd Feb 2008

Link:  http://icwales.icnetwork.co.uk/news/cardiff-news/2008/02/02/bid-to-end-dying-man-s-misery-91466-20427718/

Wales Today 28th Jan 2008

Jeremy Vine show Radio 2 1230pm 29th Jan 2008

BBC News article

Link:  http://news.bbc.co.uk/1/hi/wales/7199745.stm

Article related to Welsh language documentary shown on S4C, 14th Feb 2006

Link:  http://news.bbc.co.uk/welsh/hi/newsid_4710000/newsid_4713200/4713288.stm
 


We also have the full support of Julie Morgan MP who is trying to arrange a meeting with John Dixon (Executive Member Cardiff County Council responsible for Health, Social Care & Wellbeing) and has issued a press release highlighting the problems that we and a number of her constituents are facing.

Now I need your help!

Here are some suggestions…

For elected officials ask the following questions

   1. Their party’s official position (if there is one)
   2. As an individual if they would vote for this situation to continue ie Pete’s care being withdrawn, which could result in him being placed in a Nursing Home, potentially involving more cost to the tax payer and/or Siaron giving up her work in the NHS

http://www.writetothem.com/
Contact

Your own MP or Assembly Members (both directly elected and those elected through proportional representation)
Contact
Edwina Hart AM Minister for Health and Social Services

9 Pontardulais Road   National Assembly for Wales

Gorseinon    Cardiff Bay
SA4 4FE    Cardiff CF99 1NA

Tel  01792 895481  02920 898400

Fax  01792 895646

edwina.hart@wales.gov.uk

There are guidelines due out from the Welsh Assembly to clarify the situation and give Local Authorities and Local Health Boards clear guidance.

Please encourage her to get these out as soon as possible and emphasise that England already have guidelines that allow cases to be assessed on an individual basis and allow for shared care within the legal framework.

The Director of Social Services is ultimately accountable to Edwina Hart so please ask her to investigate the way in which Cardiff Social services have acted as they have disregarded their own complaints procedure and the letters and reports from them have caused us great distress because of their overbearing and sometimes threatening approach.
Contact

Cllr John Dixon (Lib Dem)     29 Galston Street

Executive Member Health, Social Care & Wellbeing Adamsdown

Cardiff County Council     Cardiff

County Hall       CF24 0HR

Cardiff Bay       02920 255667

Cardiff        02920 465351

CF10 4UW       07974 021172

He is the Executive Member of the Council responsible for Health and Social Services and at present the Director of Social Services appears to have his full backing.

The Liberal Democrats are now the largest party on Cardiff County Council and control the Executive Committee but they do not have an overall majority.

How you vote as a Cardiff resident will be crucial in the forthcoming elections and I would be grateful if you could emphasise this when communicating with any of the councillors.
 
 
 
Contact

Neelam Bhardwaja

Corporate Director (Social),

Room 515, County Hall, Atlantic Wharf, Cardiff , CF10 4UW

nbhardwaja@cardiff.gov.uk
If you live in Cardiff there are local elections in May
Contact your councillor

They will say they can’t comment because Pete and I are not in their ward but you can let them know how you will be voting in the next election.

http://www.writetothem.com/

Contact our councillors (Heath – all Liberal Democrat)
 

      Cllr Michelle Michaelis Cllr Gerald Harris Cllr Jim James

      Treetops   40 St Malo Road 93 Maes-y-Coed Road

      Bridge Road   Heath   Heath

      Old St Mellons  Cardiff   Cardiff

      Cardiff    CF14 4HN  CF14 4HE

      CF3 6UY      
Tel 02920 793380  02920 217986 02920 611322

Fax 02920 779745  02920 628308 02920 623901

Mob     07974 413554 07980 922546

      m.michaelis@cardiff.gov.uk g.harris@cardiff.gov.uk j.james97@ntlworld.com

Surgeries held 1st Sat each month (term-time) at Birchgrove Primary School 10am-11am and at Maes-y-Coed Community Centre every 3rd Weds evening 630-730pm.

Finally….

Please sign the petition to the Prime Minister.

Link: http://petitions.pm.gov.uk/PeteRees/

Generate any media interest you can – try letters to both local and national newspapers.

Send this information to everyone you know and encourage them to do the same!

Look at my blog : http://www.siaronwest.blogspot.com

This reminds me of ADAPT protests and campaignig when I was in the US -




People in the UK have achieved direct payments but it looks like disabled people like Peter still can have their choices taken away from them.

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3 novembre 2007 6 03 /11 /novembre /2007 16:03
Yes, I know I am a bit slow.

But I am only now just reading Peter's paper on IL in Malaysia.He wrote:

The support extended by JICA and the Human Care Association since 2005 in organising trainings for disabled leaders coupled with the current advocacy activities have created a greater awareness among disabled people on their rights and the concepts of Independent Living. The time is ripe now for the establishment of IL Centres in Malaysia.

Currently IL-based activities are being conducted by organisations on an ad-hoc basis as there are no IL Centres in Malaysia that adheres to the principles similar to those set by the National Council on Independent Living (NCIL) and Japan Council of Independent Living Centres (JIL).

Nevertheless, by the end of 2007 two Independent Living Centres will be officially set up in Malaysia based on established IL Centre principles. One is in Kuala Lumpur and the other in Petaling Jaya, a city next to Kuala Lumpur.

How exciting! I would like to go back to KL and visit.
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