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Date archive for: October 2017

Open Letter to Uber: Your failure of a Disabled Customer

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Equality & Diversity, Fighting for Change, Making a difference, Media, Personal, and Public Transport

Last weekend was rare for me. I was really looking forward to a short break in London, visiting one of my oldest friends and my sister. I have Cerebral Palsy and a four year old son, so taking a break is a real treat.

We’d arranged a night out and as a wheelchair user, this takes some planning but my best mate had it all in hand. As there was a large group of us, we booked two of your taxis in advance. One to take the majority of our group and the other, an accessible vehicle to accommodate me and my friend; we even got a text to confirm our booking.

As I believe is your standard practice, five minutes before our requested slot, we got another text indicating that you were on your way. So we piled outside just to be ready and the other taxi for our friends arrived. However, our advanced booked accessible vehicle was nowhere to be seen. We waited and waited. No more texts pinged and still we waited. Half an hour later, it was evident that we had been forgotten. There was no way of contacting you to let you know that a vulnerable, disabled customer had just been left high and dry. For had I been alone (as I mostly am in my travels around the country), that’s exactly what I’d have been. Alone and vulnerable, with no way of letting you know of your unforgiveable mistake. Luckily for you, I had my friend to ensure that I wasn’t just left on a dark street, in an unfamiliar city with no way of getting to my destination.

In case you’re interested, we did eventually get to where our party had been waiting over an hour. However, because we couldn’t get an accessible cab, I had to go without my electric wheelchair, which made it difficult and took the shine off what should have been a great night out with my friends.

But I’m afraid my complaint doesn’t stop there. Your initial response when my friend made contact was, as he described it, lacklustre:

So sorry to hear that you did not meet your friends on time.

Although you have requested uberAccess in advance, unfortunately, there’s no available driver-partner to accept your requests that is why it was unfulfilled.

Feedback like yours helps us optimise the pickup experience. We appreciate your patience and understanding.”

 

So if there wasn’t a vehicle available, why did we receive a text five minutes beforehand?

And secondly, you don’t have our patience or understanding. You left us waiting, with no way of contacting you or of getting to our destination. And you ruined our night.

Your response shows a total disregard and ignorance for what you actually did which was to ignore the request of a vulnerable, disabled wheelchair user. Had I been alone, I wouldn’t have known where to go or what to do.

In further correspondence, you go on to suggest we may have misunderstood how the Uber App works and the messages it generates. This is your issue, not ours and the fact remains you have let down a disabled customer at a time when your very presence in London is under threat.

Guest Blog: Leon Taylor – Striving to help others with Cerebral Palsy

Posted in Cerebral Palsy, Cerebral Palsy Sport, and Disability Awareness

Leon Taylor has Cerebral Palsy and is a former Paralympic footballer. He’s an Ambassador and Trustee of Cerebral Palsy Sport and also the UK representative of the World CP Day Committee.  Here’s his blog. . .

I was born with Cerebral Palsy, which predominantly affects the right side of my body. As a former Paralympic footballer I now strive to help others with the condition to realise their sporting potential through my work as an Ambassador and Trustee for the charity Cerebral Palsy Sport. Last year I was invited to become the UK representative on the World CP Day Committee.

World CP Day has been celebrated each October since 2012, with more than 60 countries across the world now recognising it. As a person who has lived with the condition since birth I am proud to be the spokesperson for the work of the World CP Day committee in the UK.

This year I am delighted that World CP Day will see the announcement of the inaugural World Cerebral Palsy Day Awards. I really enjoyed judging all of the entries along with my fellow colleagues who sit on the World CP Day committee.

They serve as an opportunity to promote six key areas for change, which have been identified as the biggest barriers for people with Cerebral Palsy worldwide.

These are;

• Public Awareness
• Civil Rights
• Medical/Therapeutic
• Quality of Life
• Education
• Making Our Contribution

On Friday 6th October I will be celebrating World CP Day 2017 by wearing green and using social media to raise awareness.

Guest Blog: Claire Farndale – No such word as ‘can’t!

Posted in Uncategorised

Claire Farndale is a Test Analyst for Northumbria University.  She’s also a wife and a mum – here’s her story of living with Cerebral Palsy:

So all my life I have had varying levels of discrimination because of my disability whether it be being picked last to be on someone’s team (because you are slow, or because you cannot catch) kids can be cruel to most recently discrimination in the jobs market but I always like to prove people wrong.

This ethos was instilled in me at a young age by my parents, who would always say there is no such word as “can’t”.  The doctors told my parents I would not walk and that I would not talk; my parents answer to this was to find a new consultant. My parents encouraged me to talk, so much so that I’ve never shut up since and I can talk the hind legs off a donkey!  Mam used to get me to play zippy (from the children’s 70’s-80’s TV show Rainbow; his mouth was a zip and could be zipped shut when he talked too much) I’m showing my age here!

As a child I was awarded the Edward Taylor Kelsey Trust award in Jarrow for my achievement in swimming and at senior school I was awarded the Lisa Anderson memorial trophy for all round endeavour; I guess if I didn’t have CP I would not have had the sheer determination to prove people wrong.

I never thought I would get married, I look in the mirror and most days I see Frankenstein staring back (all I see are scars from various operations) whereas my husband always says I’m beautiful and more importantly he has taught me not to take life so seriously. He is my rock and always picks me up when I’m down (sometimes literally when I’ve fallen over!). His favourite is when I’m driving and people stare at my handset (adaption to drive my car with one hand); he is like “blow them a kiss they think you are a supermodel!” which has me crying with laughter whereas 10 seconds earlier I was so self-conscious.

I was told it would be dangerous to my health having a baby – it has been the most difficult thing I’ve ever done but every day is amazing, it’s funny how a slobbery kiss or peals of laughter make you forget your pain. Yes, I’ve had to be creative in how I do things, but I’m enjoying the challenge. I bought a changing mat that has a harness on to strap my active toddler in to help me get him changed and an old school friend pointed out “What will you do when he gets up and runs away with the mat strapped to his back?” Sh*t I never thought of that! Thankfully he hasn’t gone and done a teenage mutant ninja turtle on me yet!

Most recently I returned to work after maternity leave only to be told I was being made redundant after 16 years of service. My world was turned upside down and more discrimination materialised going for interviews. First contact – the dreaded handshake. As I don’t have use of my right hand I would always offer my left, then the questions would start – “Oh I didn’t realise what else can’t you do.” –   I’m left thinking, “erm really I did fill out on my application form which you obviously haven’t read.”  Anyway I don’t want to bore you as I could go on….

Thankfully my work life has been kick started again as I secured employment at Northumbria University in July. My managers Jack and Gillian have been fantastic, so helpful and understanding about my hospital appointments (I have them coming out of my ears) and it makes such a difference working for a disability confident employer. Yes it’s been hard leaving my little boy with my parents or in laws but I just want to make him proud.

Here is my list of perks of living with CP:

  • Work meetings come to me
  • I make people blush when I say we should all be French and air kiss when we meet people, instead of the inherited (Greek) handshake not sure how that would go down in job interviews!
  • I get free parking in my city centre
  • Fond memories of wheelchair race with my husband’s grandad along Whitby pier!
  • Getting into the cinema 2 for 1 – so only pay for one posh seat but get two at the Metrocentre!

What are your perks?

 

Cerebral Palsy: The good, the bad and everything in between

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Education, Equality & Diversity, Fighting for Change, Flyinglady Training, Making a difference, My writing, Personal, Social Model of Disability, Uncategorised, and World CP Day

This is my life, my feelings, my achievements and frustrations of living with Cerebral Palsy

Campaigning – I’ve spent the last ten years supporting and campaigning for the rights of Disabled People. I ran a campaign to improve the accessibility of my local area – taking it as far as No. 10 Downing Street.  Find information about my “Great Barr Great” Campaign here

Exhausting – Having CP means every day tasks can take me longer and I get tired easily. But I don’t let it stop me!

Rebel – You tell me, “You can’t” and I’ll tell you, “Just watch me!” I thrive on proving people wrong and achieving what might be considered the impossible!

Exciting – I truly believe my life wouldn’t be as fulfilling and as exciting as it is without my Cerebral Palsy. Life has taken me down many exciting paths so far and I’m grateful for that.

Brave – Please don’t call me brave. I’ve always had CP and I’m just living my life the only way I’ve ever known – I’m not brave or special. I’m just Aideen.

Regrets? – Would I have a life without CP if I could? Not a chance. It’s made me who I am and I wouldn’t change that.

Awareness – My training business is focused on raising awareness of disability and making life easier for other disabled people by changing attitudes. And believe me when I say, here in 2017, that there’s still a lot of work to be done in changing how people view disability.

Living – I’m just trying to live my life. I hope World CP Day will make that a little easier by making people more aware of CP and it’s implications.

 

Passionate – I’m guessing you know by now the passion I have for making a difference to the lives of others with disabilities. The Social Model of Disability made huge headway in changing the way society views disability but unfortunately, discrimination is still occurring regularly. This has to change and disabled people have to be put on an equal footing with everyone else in society.

Accessibility – Getting around in a wheelchair is far from simple and I think I’m getting a name for myself in trying to identify and put right the problems! The Equality Act 2010 intended to address such issues and yet I still find accessibility issues a major barrier to me leading a “normal” life – whatever that is!

Lonely – I don’t mean this in the traditional sense, but sometimes it can feel quite lonely fighting for change and it can feel like an uphill struggle. World CP Day is an opportunity for people to pull together and raise awareness in oppose to being a lone voice, as it often feels.

Scary – There are times, when as confident as I am, having Cerebral Palsy can be scary. When I’m meeting someone new and not sure if they will understand my speech; when I’m in a new environment and unsure how others will react to me. Awareness of CP really helps take away that fear.

Yes – My mum always told me there was no such word as can’t so if I can find a way to do things, the answer is always yes!

 

See what I did there?!

 

If you or someone you know has CP, please get in touch and if there’s anything I can help you with just let me know.

Corporate training and support also available – please contact Flyinglady.

Guest Blog: Thomas Talbot – My Racerunning Story

Posted in Accessibility, Cerebral Palsy, Cerebral Palsy Sport, Disability Aids, Disability and kids, Disabled Access, Family, Racerunning, and Uncategorised

Thomas Talbot is 13 years old and has Cerebral Palsy – it hasn’t stopped him from becoming a successful international Racerunner. Here’s his story. . .

My story

Picking up my new RaceRunner

Hi – my name is Thomas. I’m 13 years old and I live near Lincoln. I am an International RaceRunner and I have cerebral palsy. I have to use a walker to get around and I sometime use a wheelchair if I get tired.

RaceRunning is an athletics discipline with a three wheeled trike and no pedals. Athletes can run on the track or use it for therapy.

I first discovered RaceRunning when I went to watch a Cerebral Palsy Sport athletics competition in Gateshead in August 2013. There were two RaceRunners competing and I was absolutely captivated by it. It looked such fun and looked like it could be something I could do. The boy that was racing was just like me – using a walker and I just loved the look of it. I badgered my Mum about it for some weeks about it after that!

My 2015 haul of silverware!

I went to a Cerebral Palsy Sport taster day in February 2014 and tried it for the first time. Wow – it was so exciting and I loved the feeling of being able to run without my walker. Then I went to a couple more taster days through 2014 and I told my parents I wanted my own RaceRunnner which we fundraised for and in April 2014 I collected my very own RaceRunner.

I don’t think at that time I knew where it would lead. The physio I had then kept saying that she thought I was getting a little stronger by using it and all I knew was that I loved doing it and it was better than painful physio.

I competed in my first RaceRunning competition in May 2015 in Manchester and then competed the whole season in different places including the CP Nationals. I won four events for Under 13’s and I was also awarded the Colin Rains Trophy for endeavour in my first season. I also won my District Young Achiever of the Year Award in 2015.

European Championships 2016

Sadly I had to have a big hip operation in January 2017 and I was in a hip spica for 6 weeks as they took some bone from my leg and grafted it into my hip. For all those days in the hospital and then recovering at home, all I wanted to do was be back on the RaceRunner (and also watching my beloved Manchester United). During my recovery we worked hard to build up strength as I have quite a leg length difference and this meant hydrotherapy as well as painful physio. But thanks to a good friend I got to see England and Manchester united play football!
I wasn’t able to compete this year until September and I really missed my friends. When I returned back to track racing at the Nationals, I won four golds in the Under 16 age group and nearly beat most of my PBs. I did not expect that!

The RaceRunnner helps me move so easily when I am on the track. I can run with the RaceRunner but can’t do that as easy with my walker. It gives me freedom. I use a chest plate and back strap so my physio also says it helps with my posture and the strength around my middle. I just love to run!

I train two to three times a week in Lincolnshire depending on homework and also what competitions are coming up. If I have training or a competition at the weekend I only train twice in the week.

European Championships 2016

I’m hoping to be selected to go to the CP World Games in Spain in 2018 and represent England. I have made the long list so really crossing fingers for final selection. I was too young when it was in Nottingham in 2015. To be selected – well that would be fab!

I wouldn’t be where I am today without the support of my family and friends. I’ve made so many friends who are just like me and I don’t feel quite so alone. I know when I get to the track or at a competitions I’m going to see them and enjoy having a laugh with them…as well as racing. It has made me much fitter since I started RaceRunning.

I feel much better about myself and more confident. I have made a lot more friends and love spending time with them at the track. I think it has made me believe in myself abit more. I am much more outgoing than I was before I started RaceRunning and I like going to different places to compete. The trip out to Denmark as an England team was awesome and we did have lots of fun!