tag:blogger.com,1999:blog-21167220221587214732024-02-18T18:43:04.821-08:00Not short of something to sayEmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.comBlogger107125tag:blogger.com,1999:blog-2116722022158721473.post-10424550599694051662015-08-11T04:39:00.001-07:002015-08-11T04:40:22.714-07:00World's Worst Place to be Disabled - BBC 3 programme<div class="yiv6301925805" dir="ltr" id="yiv6301925805yui_3_16_0_1_1439140614698_39854" style="background-color: white; font-family: verdana, helvetica, sans-serif; font-size: 16px;">
<span class="yiv6301925805" id="yiv6301925805yui_3_16_0_1_1439140614698_39853">Last night I watched a very harrowing documentary made by Sophie Morgan a disabled woman I interviewed a while ago when she was a contestant on a disabled modelling programme.</span></div>
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<span class="yiv6301925805" id="yiv6301925805yui_3_16_0_1_1439140614698_42386">The programme 'The World's Worst Place to be Disabled' is about the treatment of disabled people in Ghana showing how disabled adults are kept hidden inside, chained up, and subjected to religious 'healing' by some very hideous individuals. That is if they are not poisoned as children by fetish priests who are paid for doing this...</span></div>
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<span class="yiv6301925805" id="yiv6301925805yui_3_16_0_1_1439140614698_42450">On the happier side the programme featured an amazing man, himself disabled, who is fundraising for a school for disabled children. On his fundraising page supporter wall he welcomes donations for just $5 - that's about £3...</span></div>
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Have a look at the work he is doing:</div>
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<a class="yiv6301925805" href="http://www.arksfoundation.org/who-is-ark-.html" id="yiv6301925805yui_3_16_0_1_1439140614698_39971" rel="nofollow" style="background-color: transparent; color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank">Who is Ark?</a></div>
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<span class="yiv6301925805"></span><span class="yiv6301925805"></span><a class="yiv6301925805" href="http://www.arksfoundation.org/who-is-ark-.html" id="yiv6301925805yui_3_16_0_1_1439140614698_40056" rel="nofollow" style="background-color: transparent; background-position: initial initial; background-repeat: initial initial; color: black; display: block; font-size: 18px; line-height: 18px; margin: 0px; outline: none; padding: 0px; text-decoration: none;" target="_blank"><span class="yiv6301925805" id="yiv6301925805yui_3_16_0_1_1439140614698_40055" style="display: inline-block; line-height: 21px; margin: 0px 0px 3px; max-height: 43px; overflow: hidden;">Who is Ark?</span></a><br />
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Who is Ark? Barimah Antwi, better known as Mr. Ark, is a native of Ghana. He lives in a simple home in the town of Maase, Offinso. Every day, he walks </div>
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<a class="yiv6301925805" href="http://www.arksfoundation.org/who-is-ark-.html" rel="nofollow" style="background-color: transparent; background-position: initial initial; background-repeat: initial initial; color: black; margin: 0px; outline: none; padding: 0px; text-decoration: none;" target="_blank"><span class="yiv6301925805" id="yiv6301925805yui_3_16_0_1_1439140614698_39994" style="display: inline-block; line-height: 11px; max-height: 13px; max-width: 145px; min-width: 85px; overflow: hidden;"><span class="yiv6301925805" style="color: #999999; font-size: 9px; vertical-align: middle;">View on <span class="yiv6301925805" style="font-weight: bold;">www.arksfoundation.org</span></span></span></a></div>
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<span class="yiv6301925805" style="color: #999999; font-size: 9px; vertical-align: middle;">Preview by Yahoo</span></div>
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If you can bear to watch the documentary it will be on BBC iPlayer for 17 more days from the date of this post.</div>
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If you can't bear to watch all of it then if you start it at 45mins in you'll see some more positive good bits including an interview with a 17 year old called Charles who I just wanted to scoop up and bring to the UK so he can fulfil his dream:</div>
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<a class="yiv6301925805" href="http://www.bbc.co.uk/iplayer/episode/b064449w/the-worlds-worst-place-to-be-disabled" id="yiv6301925805yui_3_16_0_1_1439140614698_40130" rel="nofollow" style="background-color: transparent; color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank">The World's Worst Place to Be Disabled?</a></div>
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<span class="yiv6301925805"></span><span class="yiv6301925805"></span><a class="yiv6301925805" href="http://www.bbc.co.uk/iplayer/episode/b064449w/the-worlds-worst-place-to-be-disabled" id="yiv6301925805yui_3_16_0_1_1439140614698_40161" rel="nofollow" style="background-color: transparent; background-position: initial initial; background-repeat: initial initial; color: black; display: block; font-size: 18px; line-height: 18px; margin: 0px; outline: none; padding: 0px; text-decoration: none;" target="_blank"><span class="yiv6301925805" id="yiv6301925805yui_3_16_0_1_1439140614698_40160" style="display: inline-block; line-height: 21px; margin: 0px 0px 3px; max-height: 43px; overflow: hidden;">The World's Worst Place to Be Disabled?</span></a><br />
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Sophie Morgan visits Ghana to uncover the reality of many disabled people who live there.</div>
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<a class="yiv6301925805" href="http://www.bbc.co.uk/iplayer/episode/b064449w/the-worlds-worst-place-to-be-disabled" id="yiv6301925805yui_3_16_0_1_1439140614698_41129" rel="nofollow" style="background-color: transparent; background-position: initial initial; background-repeat: initial initial; color: black; margin: 0px; outline: none; padding: 0px; text-decoration: none;" target="_blank"><span class="yiv6301925805" id="yiv6301925805yui_3_16_0_1_1439140614698_40148" style="display: inline-block; line-height: 11px; max-height: 13px; max-width: 145px; min-width: 85px; overflow: hidden;"><span class="yiv6301925805" id="yiv6301925805yui_3_16_0_1_1439140614698_41128" style="color: #999999; font-size: 9px; vertical-align: middle;">View on <span class="yiv6301925805" id="yiv6301925805yui_3_16_0_1_1439140614698_41127" style="font-weight: bold;">www.bbc.co.uk</span></span></span></a></div>
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<span class="yiv6301925805" id="yiv6301925805yui_3_16_0_1_1439140614698_42698" style="color: #999999; font-size: 9px; vertical-align: middle;">Preview by Yahoo</span></div>
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<div class="yiv6301925805" id="yiv6301925805enhancrCard_2" style="background-color: white; font-family: Georgia, Times, 'Times New Roman', serif; font-size: 16px; margin-bottom: 5px; margin-top: 5px; width: 450px;">
<div class="yiv6301925805" dir="ltr" id="yiv6301925805yui_3_16_0_1_1439140614698_39856" style="font-family: verdana, helvetica, sans-serif;">
If you are reading this post after the 17 days have lapsed you can see Charle's in a video on the Ark's Foundation website:</div>
<div class="yiv6301925805" dir="ltr" id="yiv6301925805yui_3_16_0_1_1439140614698_39856" style="font-family: verdana, helvetica, sans-serif;">
<br /></div>
<div class="yiv6301925805" dir="ltr" id="yiv6301925805yui_3_16_0_1_1439140614698_39856" style="font-family: verdana, helvetica, sans-serif;">
http://www.arksfoundation.org/meet-the-locals.html</div>
<div>
<br /></div>
</div>
EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-62566595496877746742015-06-17T09:52:00.002-07:002015-06-17T09:52:41.228-07:00Promoting the Rough Guide to Accessible BritainI'm quoted in the following publicity for the excellent Rough Guide to Accessible Britain. <br />
<br />
I'm always happy to promote the guide because as Kofi Annan once said "Knowledge is power. Information is liberating". <br />
<br />
So anything that disseminates information to disabled people has to be a good thing.<br />
<br />
<a href="http://www.carehome.co.uk/news/article.cfm/id/1569469/free-uk-travel-guide">www.carehome.co.uk/news/article.cfm/id/1569469/free-uk-travel-guide</a><br />
<br />
<a href="http://www.homecare.co.uk/news/article.cfm/id/1569469/free-uk-travel-guide">www.homecare.co.uk/news/article.cfm/id/1569469/free-uk-travel-guide</a>EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-2776935467840635472015-06-16T06:02:00.004-07:002015-06-16T06:04:33.330-07:00National Geographic Traveller - feature on accessible travelAs a writer I'm normally in the business of finding people to provide quotes for the articles I write but it's always nice to be the other side of the equation and be quoted for a change as in this feature in National Geographic Traveller about accessible travel:<br />
<br />
<a href="http://www.natgeotraveller.co.uk/smart-travel/features/accessible-travel/">www.natgeotraveller.co.uk/smart-travel/features/accessible-travel/</a><br />
<br />
<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-34111441109274913432014-03-24T11:31:00.001-07:002014-03-24T11:32:16.099-07:00The power of the 'Can Do' Attitude...I've come to the conclusion that it is essential for children to find something they CAN do and want to 'get into'. When they find that thing it not only boosts their confidence and happiness while they are doing it but those positive effects permeate into other areas of their life too.<br />
<br />
This is particularly important for a disabled child because so often they are comparing themselves [or are compared] to their peers and focusing on all the things they can't do.<br />
<br />
So I was particularly pleased when my son Archie, who also has Kniest, recently won the 2013 ‘On the Move’ national competition for photographers with disabilities which is jointly organised by Mobility Choice, the charity responsible for
delivering The Mobility Roadshow, and the Disabled Photographers’
Society (DPS).<br />
<br />
He was so chuffed and last week even made it into the local paper so that won him some additional kudos at school too:<br />
<br />
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EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com1tag:blogger.com,1999:blog-2116722022158721473.post-21624387339808509102014-01-25T04:45:00.001-08:002014-01-25T04:45:09.707-08:00East Midlands Trains - Winner of my 2014 'Can't Do' Attitude Award [will anyone beat this?]Well all I wanted to do was book a train from where I live to Loughborough to attend a training course for a job I've just got. Just how hard can that be?<br />
<br />
<u>A Non Disabled Person's Experience of booking a train ticket</u>:<br />
<br />
A non disabled person would go to a train website, put in the details of where/when they want to travel, pick the appropriate tickets and pay for them. <br />
<br />
Bingo! Job done. <br />
<br />
Time taken: less than 5 mins.<br />
<br />
<u>A Disabled Person's Experience of booking a train ticket</u>:<br />
<br />
A disabled person would go to a train website, put in the details of where/when they want to travel, pick out the appropriate tickets they'd like to book...<br />
<br />
Armed with this information they would then have to ring to book the tickets and assistance on a special assistance line.<br />
<br />
They would have to go through all the relevant details, bit by bit. [In my case I'd have to argue for a while about needing to take a mobility scooter on the train - something I've done numerous times without an issue at the station]. Once they'd gone through this then they would book the tickets. Then they would have to go back over all the details again to book the assistance, bit by bit.<br />
<br />
Time taken: about 30 mins.<br />
<br />
<br />
But the problem with the journey I wanted to do was that it involved a leg with East Midlands Trains. The man at South West Trains who I use to book my tickets and assistance with insisted I called East Midlands Trains before booking...<br />
<br />
So I call East Midlands Trains, I'm immediately told they have a very stringent scooter policy, health and safety and all that. <br />
<br />
However, I explain that I have a very small scooter confident they can't possibly have an issue with it. As soon as the scooter name comes out of my mouth the man at the end of the phone says 'No, can't take that one.' He goes on to explain that he personally has seen one tip over on the ramp. I say OK I can walk it up the ramp. No not possible apparently too dangerous.<br />
<br />
He suggests I get a wheelchair - but I don't have a wheelchair, I don't want a wheelchair, I already have a scooter which I feel very comfortable and confident on. I would not feel either in a wheelchair.<br />
<br />
He then suggests that I could pack the scooter into a carry case [my scooter doesn't have a carry case] and carry it on to the train. <br />
<br />
The scooter is 30kg. I'm 4ft tall, about 42kg in weight, all my joints are stiff and deformed, I find steps difficult, I find train steps impossible. As you can imagine carrying a scooter onto the train would be very difficult for me - and what about my health and safety? East Midlands rules clearly doesn't apply to me? Cheers.<br />
<br />
I'm told the trains weren't built for taking scooters and that the man's own partner has a disability and can't travel on her scooter on the trains as if though that will make me feel better - it doesn't, it makes me feel angry - so she's not allowed on the trains either - there's another name for this Discrimination [under the guise of Health and Safety].<br />
<br />
So Thank You East Midlands Trains for pulling out all the stops so I CAN'T travel on your trains, you've been SO helpful.<br />
<br />
I'm going to drive.<br />
<br />
<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com1tag:blogger.com,1999:blog-2116722022158721473.post-44922035548791304382013-12-23T15:20:00.000-08:002013-12-23T15:20:34.702-08:002014 - the year supermarkets clamp down on disabled parking abuse?A few months ago a 64 year old man, Brian Holmes, was killed following a row over a disabled parking space at an Asda store in Bedfordshire. Alan Watts, 65, was found guilty of manslaughter and has recently been jailed for 5 years.<br />
<br />
The abuse of Disabled parking spaces is something that used to really get on my nerves but to a large extent now I have moved out of London it has become less of an issue for me in terms of the abuse I witness on a day to day level. <br />
<br />
Then one very wet Sunday morning in the run up to Christmas I went to a large Tesco near me... Even though I arrived early most of the disabled spaces are taken and few have blue badges. When I point this out to the lady on Customer Services she comes up with the excellent excuse 'there is nothing we can do'.<br />
<br />
Well it's good to know that Tesco values its disabled customers, er not. Of course this is the same supermarket chain that didn't seem to give
a stuff that they were installing inaccessible self 'pay at pump'
machines... I voted with my feet after experiencing that and have never bought petrol from them since. <br />
<br />
So until Tesco have more of a 'can do' rather than a 'can't be bothered' attitude towards making its stores accessible I'll be making sure I go elsewhere. <br />
<br />
But it will be interesting to see whether the Bedfordshire case opens up the supermarket chains eyes to the depth of emotion that people feel around abuse of disabled parking and how much the issue riles people. <br />
<br />
Will 2014 be the year they finally start fining people for parking in disabled spaces? <br />
<br />
EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-16786798486698080452013-10-16T06:27:00.000-07:002013-10-16T06:28:41.533-07:00Is all publicity good publicity for disabled people?Article about a man with MS who can usually only walk 10m, who walked 60km in a week to raise money for the MS Society:<br />
<br />
<a href="http://enablemagazine.co.uk/index.php/2013/10/ms-man-who-can-only-walk-10-metres-with-stick-walks-60k-in-a-week/">http://enablemagazine.co.uk/index.php/2013/10/ms-man-who-can-only-walk-10-metres-with-stick-walks-60k-in-a-week/</a><br />
<br />
I couldn't help wondering if he got the Mobility Component of the Disability Living Allowance [now called PIP] whether doing, and publicising, something like this could cause him to lose it?EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-33789864070809202682013-08-18T14:52:00.000-07:002013-08-18T14:53:45.913-07:00ITV's 'My Dwarf Family' [their programme title not my ideal wording...]I can't stand the word Dwarf. Whilst some short people have reclaimed it using the word just doesn't work for me because it still has too many negative and derogative connotations.<br />
<br />
So it was with trepidation that I watched ITV's 'My Dwarf Family' [was on Thursday 15th August, 2013] - a programme which followed 3 families each of which had one or more members who had achondroplasia, the most common form of short stature.<br />
<br />
Although the condition is somewhat different to Kniest Syndrome the issue of short stature does throw up similiar issues whatever the label you give it and it is always interesting to see how other people fare.<br />
<br />
I really felt for the young couple [the woman had achondroplasia and the man didn't] grappling with the issue of when to have children [she wanted them now, he didn't]. They both seemed to feel, as we did, that they would want a child whether or not it would be short statured.<br />
<br />
Having been there and done that, and having ended up with one child who is short statured and one who isn't, I think I can honestly say that the such a seemingly simple decision can turn out to be hugely more complicated when it becomes a reality...<br />
<br />
I also really felt for the parents of the young children who were short statured - the whole 'letting go' of your child, getting them to 'act' their age, letting them be independent just seems so much harder when they are so much smaller than their peers.<br />
<br />
Indeed the programme opens with a boy, the height of a 4 year old, cycling by a very busy main road - it looked hideously like a bad idea, but this boy was 11. Most likely his peers would be allowed to do this so why not him?<br />
<br />
Whether the decision was easy or hard for his parents I don't know but there is no doubt that if you are a short statured parent [or wannabe parent] you'll face some very tough decisions along the way, it isn't a process for the fainthearted and perhaps that's why we're such a feisty, resilient lot! <br />
<br />
If you want to see the programme it's up for a couple of weeks:<br />
<br />
<a href="https://www.itv.com/itvplayer/my-dwarf-family/series-1/episode-1-my-dwarf-family">https://www.itv.com/itvplayer/my-dwarf-family/series-1/episode-1-my-dwarf-family</a><br />
<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-60386003453161824722013-07-28T14:22:00.000-07:002013-07-28T14:22:49.327-07:00Government consultation on the PIP assessment 'moving around' activity - URGENT action needed<div id="yui_3_7_2_1_1375045930323_1963">
<span id="yui_3_7_2_1_1375045930323_1962">The Government is running a consultation on the PIP 'moving around' criteria - it is vital that as many organisations, professionals and disabled people themselves respond to halt their proposed change:</span></div>
<div>
<span></span> </div>
<div>
<span>In a nutshell to be eligible for the enhanced rate of PIP [Personal Independence Payment] you mustn't be able to walk more than 20 m, yes a mere 20m. Previously the proposed distance was a more realistic and better justified 50 m. </span></div>
<div>
<span></span> </div>
<div>
<span>The deadline for responding to this consultation is 5 August 2013 so please do hurry and respond, use the We Are Spartacus webpage here to help formulate your response:</span></div>
<div>
<span></span> </div>
<div>
<a href="http://wearespartacus.org.uk/pip-mobility-consultation-making-most-of-opportunity/">http://wearespartacus.org.uk/pip-mobility-consultation-making-most-of-opportunity/</a></div>
<div>
</div>
<div>
<span>My response was as followed:</span></div>
<div>
<span></span> </div>
<div>
<span>Dear Sir/Madam</span></div>
<div id="yui_3_7_2_1_1375045930323_1954">
<span></span> </div>
<div id="yui_3_7_2_1_1375045930323_1993">
<span id="yui_3_7_2_1_1375045930323_1992">I feel very strongly that the 50 m PIP moving around criteria should not be reduced to 20 m.</span></div>
<div id="yui_3_7_2_1_1375045930323_1991">
<span></span> </div>
<div id="yui_3_7_2_1_1375045930323_1989">
<span id="yui_3_7_2_1_1375045930323_1988">It represents a totally unjustified moving of the disability goal posts so that people who, like myself, have had their mobility difficulties recognised and acknowledged through receipt of Higher Rate of DLA may all of a sudden no longer be eligible for the enhanced rate of PIP. There has been no miracle cure here just a cynical shifting of goal posts.</span></div>
<div id="yui_3_7_2_1_1375045930323_1994">
<span></span> </div>
<div id="yui_3_7_2_1_1375045930323_1996">
<span id="yui_3_7_2_1_1375045930323_1995">To limit receipt of the enhanced rate of PIP to those who can effectively only move about between rooms in their house and no further is simply ridiculous and the Government has failed to provide any research justification for the 20m criteria. </span></div>
<div id="yui_3_7_2_1_1375045930323_1997">
<span></span> </div>
<div id="yui_3_7_2_1_1375045930323_1999">
<span id="yui_3_7_2_1_1375045930323_1998">Reducing the formerly well established 50 m limit even goes against your own second draft of PIP assessment criteria, Nov 2011 where you state '50 metres is considered to be the distance that an individual is required to be able to walk in order to achieve a basic level of independence'. Where is the justification that now only people who are unable to walk more than 20m should be eligible for enhanced rate mobility component?</span></div>
<div>
<span></span> </div>
<div>
<span>Indeed for years the 50 m benchmark has guided access to the built environment and widely used in relation to disability benefits.</span></div>
<div>
<span></span> </div>
<div>
<span>Using a 20 m benchmark is unrealistic - it simply does not provide any practical level of mobility. There will be many disabled people with considerable mobility difficulties who may be able to walk 20 m but not over 50, who will lose access to the Motability Scheme which will potentially have a huge impact on their independence , for some it will jeopardise or even mean termination of their employment options/status, with repercussions on other parts of the benefit system.</span></div>
<div id="yui_3_7_2_1_1375045930323_2022">
<span></span> </div>
<div id="yui_3_7_2_1_1375045930323_2021">
<span id="yui_3_7_2_1_1375045930323_2020">It's hard to believe that reducing the limit from 50 to 20 m isn't an infringment of the Human Rights Act. </span></div>
<div id="yui_3_7_2_1_1375045930323_2000">
<span id="yui_3_7_2_1_1375045930323_2001">Maintaining the 50 m limit acknowledges that those with mobility difficulties have a right to a certain quality of life, free from isolation, with the option of persisting with practical opportunities eg doing the school run, </span><span id="yui_3_7_2_1_1375045930323_2002">GP/hospital appointments, shopping, as well as social and employment opportunities secured through having a relatively small amount of help through the enhanced rate of PIP.</span></div>
<div id="yui_3_7_2_1_1375045930323_2019">
<span></span> </div>
<div id="yui_3_7_2_1_1375045930323_2004">
<span id="yui_3_7_2_1_1375045930323_2018">Please do not take away the independence of hundreds of thousands of disabled people who have considerable mobility difficulties, the help they need is relatively small but the impact of not having this help would be hugely negative, let alone unjustified.</span></div>
<div id="yui_3_7_2_1_1375045930323_2005">
<span></span> </div>
<div id="yui_3_7_2_1_1375045930323_2006">
<span>Yours faithfully</span></div>
<div id="yui_3_7_2_1_1375045930323_2007">
</div>
<div id="yui_3_7_2_1_1375045930323_2008">
<span style="font-size: small;">Emma Bowler </span></div>
EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-72470709207779746992013-06-26T03:33:00.000-07:002013-06-26T03:33:06.491-07:00Don't Call Me Crazy, BBC Three - part of It's A Mad WorldI'm not interested in TV programmes about celebrities, so they are getting married, having babies, spending money, flaunting themselves, so what.<br />
<br />
What I like programmes about REAL people and you couldn't get more real and more raw than the young women on 'Don't Call Me Crazy' on BBC Three last night which launched the channel's 'It's A Mad World' series of programmes looking at mental health issues affecting young people in Britain today.<br />
<br />
The programme told the story of a few of the young women in Manchester's McGuinness Unit, where clearly dedicated staff worked hard to try and support them on the path of getting back into the world again.<br />
<br />
But their job is not easy because in spite of the fact that the women featured were articulate, insightful and beautiful, and sometimes comic and fun loving too, they are plagued by demons of depression, self harm, suicidal thoughts/attempts and eating disorders.<br />
<br />
I couldn't help wondering what has to happen to make a child grow into a young person with such huge issues to contend with but young people today do have so much pressure and so much to contend with, in an increasingly difficult world to live in because of financial, housing and employment worries.<br />
<br />
The honesty and courage those young women had to share their
experiences with viewers was astonding and I hope that at the very least
they've gained something positive, for themselves, from being part of the programme. <br />
<br /><br />
EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-888713518943772562013-05-22T12:03:00.002-07:002013-05-22T12:03:20.018-07:00Disability Now article - The Growing Pains of a Disabled ParentNo one warns you how hard it is to be a parent, let alone the parent of a disabled child. <br />
<br />
I was talking to another parent of a disabled child the other day and I basically admitted I 'wing' it - I try things out, see if they work and if they don't move on to plan B, C, D... til I find the solution. <br />
<br />
Sure, there's some input from the 'professionals' from time to time but the bottom line is that the 'winging' it that us parents do is the only real way forward. He totally agreed, saying he did the same, which was somewhat reassuring!<br />
<br />
My latest Disability Now article about the trials and tribulations of being a disabled parent of a disabled child is now up on their website:<br />
<a href="http://www.blogger.com/goog_947321732"><br /></a>
<a href="http://disabilitynow.org.uk/article/growing-pains-disabled-parent">http://disabilitynow.org.uk/article/growing-pains-disabled-parent</a><br />
<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-84907885887208803392013-05-02T03:27:00.001-07:002013-05-02T03:27:41.230-07:00My latest articles: Wheelchair dancing and an interview with ex serviceman Rory MackenzieI've got two articles in the latest edition of the Motability magazine 'Lifestyle'.<br />
<br />
The first is about wheelchair dancing [see page 35] and increasingly popular pastime and sport for wheelchair users, and the second is an interview with a great guy called Rory Mackenzie [see page 46] who was injured in Iraq but has gone on to do so many exciting things:<br />
<br />
<a href="http://digital.edition-on.net/links/6716_lifestyle_79.asp">http://digital.edition-on.net/links/6716_lifestyle_79.asp</a><br />
<br />
<br />
<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-35569211068351477262013-03-25T09:52:00.002-07:002013-03-25T09:59:59.536-07:00A Special Kind of Mum - BBC THREE programme previewCheck out my preview of the BBC THREE programme 'A Special Kind of Mum' which goes out at 9pm on Tuesday 26 March and is repeated a couple of times after that, see preview for details:<br />
<br />
<a href="http://www.disabilitynow.org.uk/article/preview-special-kind-mum">http://www.disabilitynow.org.uk/article/preview-special-kind-mum</a><br />
<br />
Worth a watch I'd say as the issue of disabled parenting doesn't get a lot of coverage. EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-23822512136336850872013-03-19T13:47:00.001-07:002013-03-22T05:21:10.525-07:00Comic Relief or Comic Flop?I must admit I didn't watch the entire BBC 1 Comic Relief output but I definitely saw enough. <br />
<br />
I laughed out loud at two bits - the first was the Master Chef sketch with Dame Edna in it, I just think s/he is brilliant and the second was when James Corden introduced "David who went to school in a mankini, yes he's a primary school teacher... now under surveillence by Social Services..." or some such similar wording. Hilarious.<br />
<br />
What was not quite so hilarious, or in fact not hilarious at all, was the Peter Kay sketch. Don't get me wrong Peter Kay is one of the funniest people around and I liked the idea that he was doing the opposite to what everyone else does on Comic Relief day ie instead of being active he was doing a sit in.<br />
<br />
But that for me was where the humour ended as he was shown being pulled around the country by a group of short statured people. Why by short people? It was simply unfunny, demeaning and stupid.<br />
<br />
As short statured actress Kiruna Stamell points out in her open letter to the BBC/Comic Relief [see link below] some of the money Comic Relief raises goes to anti-bullying projects - but where's the positive representation of short statured people in the Peter Kay sketch? How would a short statured child have felt about watching that I wonder?<br />
<br />
Apparently Zoe Ball also thought it hilarious to make a joke about 'midgets' and Ricky Gervais managed to add his tuppence to deriding disabled people too.<br />
<br />
Where are all their quips and digs at black people, gay people, women? Nowhere that's where. So why do these comedians/presenters think it's still OK to insult and dehumanise disabled people/short people in the name of humour?<br />
<br />
When I challenged the Comic Relief press office on this, this was their total brush off of a response:<br />
<br />
<div class="yiv1965178575MsoNormal" id="yui_3_7_2_1_1363723931044_4671">
<i><span id="yui_3_7_2_1_1363723931044_4670">Comic Relief<b>
</b>aims to raise as much money as possible to help vulnerable people
here in the UK and in the world’s poorest countries. The night of
television is a light hearted and entertaining programme which does not
aim to offend.
</span><span id="yui_3_7_2_1_1363723931044_4674" lang="EN-US">The
BBC has full editorial control of all content on BBC channels and
platforms and the programme is made by the BBC, not Comic Relief.
Please contact the BBC with enquiries about the night
of television. </span></i></div>
<i>
</i>
<br />
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I was insulted for the first time in my life on Saturday purely on the basis of being short statured, coincidence after Comic Relief's coverage on Friday? You decide.<br />
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To read Kiruna's letter to the BBC/Comic relief in full follow this link, she's going to make an official complaint but I suspect she'll get the usual response along the lines of the above:<br />
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<a href="http://kirunastamell.net/2013/03/16/dear-bbc-and-comic-relief/">http://kirunastamell.net/2013/03/16/dear-bbc-and-comic-relief/</a>EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com2tag:blogger.com,1999:blog-2116722022158721473.post-38589119108739401242013-02-19T11:55:00.001-08:002013-02-19T11:55:53.178-08:00Oscar Pistorius - either way it's a tragedyIt seems that Oscar Pistorius shot his girlfriend - on purpose or by mistake - either way it's a tragedy.<br />
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I get the feeling that some of the people passing judgement on the case have no real insight into the crime culture in South Africa - shootings, car jackings and the like.<br />
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Sadly levels of violent crime in South Africa are very high - the country has one of the highest rates of gun murder in the world with over 8,000/year. What I'm trying to say is that if Pistorius thought there was an intruder in the house that it's quite feasible that that would have push him right to the edge. And it's impossible to know what you'd do in that state.<br />
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Whether forensics can back Pistorius's version of events, or disprove it, remains to be seen. Cremating the body of the deceased so soon seems a little hasty but I guess these people know what they are doing...<br />
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This is the story of a disabled man who had it all, a National and International hero at the London 2012 Olympics and Paralympics. Whatever happens it's probably going to be very hard for him to get back onto that pedestal.EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-61327066894173325952013-02-06T06:02:00.000-08:002013-02-06T06:03:50.985-08:00Moving the disability benefit goalpostsThe Government's reform of Disability Living Allowance into Personal Independence Payments is of great concern to many disabled people, check out my latest article for Disability Now on the subject:<br />
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<a href="http://disabilitynow.org.uk/article/moving-goalposts-pip-eligibility">http://disabilitynow.org.uk/article/moving-goalposts-pip-eligibility</a><br />
<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-74851178057130545342013-01-25T07:27:00.000-08:002013-01-25T07:27:43.450-08:00Ellie Simmonds - what a role modelIt's just brilliant seeing Ellie Simmonds popping up on the TV - I've spotted her on Sports Personality of the Year [where she spoke with huge confidence], A Question of Sport [where she got a lot of the answers right and was on the winning team] and this week on The Great Comic Relief Bake Off [where she was made Star Baker].<br />
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Her inclusion in these programmes is just so natural, and it's simply great to see a young disabled person [she's just 18 years old] with so much confidence, life and charm.<br />
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I hope she realises what an inspiration she is. I know a lot of disabled people hate the 'i' word but take my son who is also short statured - the only other short statured person he sees is me, so it's just fabulous for him to see someone else who is short not only on TV but right up there with other sportspeople and celebrities. <br />
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Let's hope the inclusion of more disabled people like Ellie on TV continues as the norm and doesn't disappear as the memories and intentions following London 2012 fades, what a great legacy that would be.<br />
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<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-66585689770964106402013-01-14T05:30:00.000-08:002013-01-14T05:30:28.992-08:00Never too late? My quest for gait analysis.Well it's another New Year and top of my list is to go to the doctors to see if they will refer me for 'gait analysis'.<br />
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Gait analysis involves someone looking at the way you walk. They use their observations to establish whether there's anything that should be done to improve the way you walk and your balance eg adjustments to shoes, wearing of insoles, recommending wearing [or not wearing] particular types of shoes etc.<br />
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Last year I saw a podiatrist - they diagnose problems with the foot, ankle, lower extremities [that's legs to you and me] - she couldn't believe I had never been referred to a podiatrist and said that if I had seen one in my childhood it could have been very beneficial potentially improving my walking, balance, maintaining joint mobility/flexibility and even reducing the curvature of my spine....<br />
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In a way hearing that was a bit of a bitter blow to me because what is done is done but I've always felt that more could have been done to improve my mobility/flexibility or at the very least help me maintain it. <br />
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But having to leave those thoughts aside I'm now determined to look after myself. Particularly because as I get older I can feel my joints moaning every now and then and my flexiblity is probably slowly decreasing. <br />
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Even though the podiatrist I saw prescribed insoles which I now wear in my shoes all the time, the wear on the soles of my shoes is still not even. I'm also getting some 'locking' in my hips if I bend over which is hugely painful and means I can't walk until I've 'unlocked' the hip. <br />
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So today I've, at last, booked the doctors appointment to make the gait analysis request. At the very least I'd like to maintain the mobility and balance that I have, if they could be improved that would be a huge bonus but I'm not expecting miracles this far down the line.<br />
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Watch this space. <br />
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<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-36769891252919100842012-12-12T08:43:00.001-08:002013-02-06T06:05:06.252-08:00Christmasy guest blog on Rough Guide to Accessible Britain<span style="font-size: small;">Check out my latest guest blog 'London Calling at Christmas' on the Rough Guide to Accessible Britain:</span><br />
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<span style="font-size: small;"><span id="yui_3_7_2_1_1355136475618_3145"><a href="http://www.accessibleguide.co.uk/daysoutblog/#" id="yui_3_7_2_1_1355136475618_3143" rel="nofollow" target="_blank">http://www.accessibleguide.co.uk/daysoutblog/#</a></span></span><br />
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<span id="yui_3_7_2_1_1355136475618_3145" style="font-size: 10.0pt;"><span style="font-size: small;">Complete with very festive photo of me, Archie and Ben as well a<span style="font-size: small;">s some top tips on visiting Lo<span style="font-size: small;">ndon<span style="font-size: small;">, </span>includ<span style="font-size: small;">ing don't forget to <span style="font-size: small;">r</span></span>egister your car<span style="font-size: small;"> for ex<span style="font-size: small;">emption from paying th<span style="font-size: small;">e congestion charge if you are a Blue Badge hol<span style="font-size: small;">der</span></span></span></span></span></span></span></span>, it would surely <span style="font-size: small;">kno<span style="font-size: small;">ck <span style="font-size: small;">ou<span style="font-size: small;">t your Christmas stuffi<span style="font-size: small;">ng if you were <span style="font-size: small;">fined instead.</span></span></span></span></span></span>.. <span id="yui_3_7_2_1_1355136475618_3145" style="font-size: 10.0pt;"></span><span id="yui_3_7_2_1_1355136475618_3145" style="font-size: 10.0pt;"><span style="font-size: small;"> </span></span><br />
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<span id="yui_3_7_2_1_1355136475618_3145" style="font-size: 10.0pt;"><span style="font-size: small;"> </span></span><span id="yui_3_7_2_1_1355136475618_3145" style="font-size: 10.0pt;"><span style="font-size: small;"> </span></span>EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-50641758152966346992012-11-19T03:59:00.001-08:002013-02-06T06:04:05.826-08:00CEA cinema card / VHPs - Very Helpful PeopleEvery now and then I come across a VHP - Very Helpful Person.<br />
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Take this weekend when I went to to cinema with a friend. I casually asked the nice young man behind the desk if there was any sort of discount for disabled people and he asked whether I had a CEA card?<br />
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I'd never heard of it but it basically entitles a disabled person in receipt of DLA or AA, or a blind person, to a free ticket for the person accompanying them to the cinema. <br />
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In spite of not having the card he gave me the discount anyway, how about that for customer service. <br />
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Now back at home I've printed off my application form for the card which is valid in all of the cinemas I've used in my local area. See here for details:<br />
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<a href="http://www.ceacard.co.uk/">http://www.ceacard.co.uk/</a><br />
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What I like about this story is not only that I will soon have a very useful card but also how helpful the man was, there are some damn good people out there.<br />
<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-10988508055193051912012-11-10T14:33:00.003-08:002012-11-10T14:33:49.754-08:00"I do" - making 2012 a year to rememberThere's no doubt that the Olympics and Paralympics left me on a feel good high and I managed to prevent any sort of 'October will be the month I come back down to earth with a bump' feeling by deciding that 2012 should also be the year that Mike and I get married.<br />
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Then I spotted that 20th October was a Saturday and all of a sudden it just felt like THE date to get married - as we met in October 20 years ago. The timing was tight - we gave notice to marry with one day spare and the whole thing was organised in 3 1/2 weeks!<br />
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A friend recommended the hotel - the perfect Hotel Endsleigh, I already had a nice dress from Monsoon which I hadn't worn yet, the boys had bizarrely pointed out some suits in Next that they really wanted [but at the time we had no Big Event for them to wear them at!], Mike bought his own suit, I booked hair appointments, charged cameras, got the car cleaned and the dog groomed in preparation. By sheer luck Mike and I had a weekend in London late September which gave us the opportunity to go to Hatton Garden in London to choose my wedding necklace [as I don't wear rings]. Sorted.<br />
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At the last minute we invited 2 friends to be witnesses and another friend to come along too, a total of 5 adults and 5 children. <br />
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The day was faultless. The sun shone as we drove across Dartmoor to the hotel and it just continued all day. The ceremony was simple and perfect, the boys read The Owl and The Pussy Cat and it was a real highlight for me as they pulled out all the stops to read it brilliantly. I didn't cry because I was just so happy and a friend commented after how happy Mike looked in the photos and he did too.<br />
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After, we sipped champagne in the sun, ate a fabulous lunch, had surprise wedding cup cakes organised by our witnesses, the meal was rounded off with impromtu speeches before having a wander in the grounds followed by an evening in front of the fire, more food and drinks. Everyone pitched in taking photos which are a wonderful reminder of a wonderful day.<br />
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It doesn't feel very different being married but if I'm honest I do feel very happy about the fact we have done it and an increased sense of security which means I feel more relaxed and calm. The boys are also delighted because as they put it I am now 'one of the family', not sure what I was before but heh I like being one of the family too.EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-72132180085496861452012-09-09T14:41:00.000-07:002012-09-09T14:41:24.134-07:00Riding the Paralympic Wave. What next?I have to be honest I never thought I'd get into the Paralympics. It was hard to see that they would provide the sort of thrill that Mo Farah, Jessica Ennis, Bradley Wiggins, Usain Bolt and so many others did at the Olympic Games. But I was wrong.<br />
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We've had 11 days of sporting excellence of the Paralympic kind, with Ellie Simmons, Jonnie Peacock, David Weir and Sarah Storey among many others putting us on the edge of our seats and reigniting Great Britain once more. For the last 11 days disabled people have been the darlings of the British population.<br />
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The media coverage has been enthused, positive and prolific.<br />
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What a contrast to the coverage that disabled people were getting before the Paralympics by certain media outlets who were largely demonising disabled people as work shy, benefit scroungers. An image that the Government seems happy to perpetuate as it makes stripping disabled people of as many benefits as it possible can, through their current welfare reforms, a much easier job.<br />
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Dare we hope that the Paralympics will inspire a more accurate coverage of disabled people's issues? <br />
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I hope that at the very least the Paralympics highlighted an important point - that disability can happen to anyone. <br />
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C4's excellent coverage saw some of the Paralympians telling their stories - some told stories of how they became disabled through illness, accident or war. I always find it ironic that people are happy to vilify disabled people and label them as work shy or scroungers as a justification for taking away their benefits when the fact is that anyone can become disabled.<br />
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So if you are someone who thinks the Government's welfare reforms are perfectly acceptable even though they have the potential to push many disabled people into povery and dependence on the state, would you be quite so accepting if that disabled person was you?<br />
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Positivity about disability is currently riding high on the crest of the Paralympic wave - could this really be the dawn of a new era in terms of media coverage of disability issues? We'll just have to watch and see.<br />
<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-30936821354395618092012-09-03T04:23:00.001-07:002012-09-03T04:23:25.518-07:00The Paralympics - portrayal pros and consThe Paralympics is a tricky thing in terms of its portrayal of disabled people.<br />
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It's possible that confusion might kick in when viewers start to think 'well if that wheelchair/amputee/blind person can do that why can't they all?' But it should be obvious that in the same way that not all non disabled people can become Olympic contenders neither can all disabled people become Paralympians.<br />
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The Paralympics features an elite sector of the disabled population
who have trained extremely hard to be the best at their sport. Simple as that really.<br />
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There is an interesting mix of responses to these athletes - incredularity, admiration, pity, recognition of the competitive spirit, 'what's wrong with him/her', use of words like 'suffer' or 'superhuman'.<br />
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The thing about all these responses is that they are actually pretty understandble given that on a day to day basis the vast majority of the public don't have any contact with disabled people and they don't get any real insight via the TV, radio, in magazines or papers because disabled people just don't feature that much in the media. <br />
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However, I'd like to think that people's perceptions may start to positively change as a result of this mass Paralympic coverage - gosh there must have been more disabled people on TV these last few days than there has been in the last few decades! <br />
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So at the very least this coverage means the public are <b>seeing </b>disabled people - both athletes and spectators - who are getting on with their lives, doing things for themselves, being positive about their impairments, looking fabulous and being fit. A lot of that would fly in the face of many people's perceptions of disability. <br />
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What the coverage obviously won't show is what it is like to be a disabled person on a day to day basis, living in the real world - facing attitudinal, physical, financial and bureaucratic barriers at every turn. <br />
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Whether this 'reality' coverage will come after interest in disability has been piqued as a result of the Paralympics we'll have to wait and see. I really hope that will be the case then maybe we can finally start to shift the inaccurate view of disability once and for all.EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-48998200883103101892012-09-02T13:24:00.002-07:002012-09-02T13:24:37.522-07:00Guardian newspaper travel article featuring meJust back from our summer holiday, went to Fitou in France and Castelldefels near Barcelona, Spain. <br />
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While I was away I was included in a Guardian travel feature 'Access all Areas' about accessible travel/holidays for disabled people.<br />
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Find my bit, complete with family pic, just over half way down under the title 'Accessible Brtain':<br />
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http://www.guardian.co.uk/travel/2012/aug/24/accessible-holidays-disabled-people<br />
<br />EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0tag:blogger.com,1999:blog-2116722022158721473.post-14542596614710832772012-08-16T16:06:00.003-07:002012-08-16T16:06:53.055-07:00Ian Brady - Time To Let Go? - Part 2On the 2 July I wrote a post about Moors Murderer Ian Brady who wants to be allowed to die. I said:<br />
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"I can't help wondering whether he should be granted his wish provided he puts
the mother of Keith Bennett, one of the children he murdered, out of her misery
and tell her where he buried his body. At least that would bring her closure
after all these years. Is there any part of Brady that is humane enough to do
that for her if he does know/still remember?"<br />
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Apparently he has now revealed, to one of his long term visitors, the location of Keith Bennett's body:<br />
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<a href="http://www.bbc.co.uk/news/uk-england-19292164">http://www.bbc.co.uk/news/uk-england-19292164</a><br />
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Does that mean he does have an inkling of humanity?<br />
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[I have to say there is a part of me which is very curious about his long term visitor- who are they, why did they start visiting, was the purpose of visiting to extract this very information?]<br />
EmmaBhttp://www.blogger.com/profile/08251907114970093617noreply@blogger.com0