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Category: Making a difference

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.

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.

Why I love being a trustee of Cerebral Palsy Sport

Posted in Cerebral Palsy, Disability Awareness, Disabled Access, Does it wet the bed?, Fighting for Change, Making a difference, My writing, and Personal

At the book launch of my memoir, Does it wet the bed?, someone happened to mention to me a Charity, Cerebral Palsy Sport and how they were looking for new trustees. I almost dismissed the idea; I had never been a sporty person, much to my regret. I wasn’t sure how much I’d have to offer such a charity.

Then I thought back to my time working for another disability charity who focused on helping disabled people into employment.  As an employee, it was sometimes frustrating as I’d have a vision for how I thought the organisation should go but no real authority to influence it’s direction.  When the charity struggled financially and my job was hanging by a thread from month to month, all I could do was do my job and hope funding would come our way – even though I had endless ideas for stabilising the charity and indeed, expanding it.

So I realised it didn’t matter that I didn’t spend my weekends by the side of a pitch – what mattered was I had the drive, the passion and the enthusiasm to make a difference to a charity. I could help other people with Cerebral Palsy to reach their sporting potential and that was what inspired me to apply.

I was thrilled to take up my role as Trustee last January and though it’s a big responsibility, I can honestly say that I’ve loved every moment so far.  I’ve put my current skills to good use and am continually developing my skills and experience, which will only strengthen my CV.  I’ve met some brilliant people and most of all, I hope, I’ve made a difference for the people using our services.  Every day is different, challenging and rewarding – even it is just a simple “thank-you” and a smile.

Yes, the role takes up my time. The usual commitment is 6 Board Meetings per year, plus 4-6 Sub-Committees Meetings per year but if you have this time to give, there’s nowhere better to give it! All your expenses will be paid and you’ll be invited to some brilliant sporting and fundraising events that are family-friendly and lots of fun!

So why not come and join us?!  To apply to be a trustee, please follow this link or you can contact me for a chat if you’d like more information.

I’m just Mummy, despite my disability

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Equality & Diversity, Family, Making a difference, Motherhood, My writing, and Personal

My little boy is now three and a half and he really is the apple of my eye. To Jack, I’ve always been just Mummy.  It doesn’t matter that my speech is a bit funny or that I walk differently to everyone else. My wheelchair is just part of me and Jack doesn’t care about any of it, all he cares about is Mummy’s cuddles!

He’s grown up with my disability and although he’s starting to realise my limitations, they thankfully don’t matter.  I’m his mum and that bond is as you’d expect, as strong as any other mother/son relationship.

I know there may come a day when Jack will ask questions about my disability and I’ve been giving a lot of thought as to how I might answer them.  With honesty and humour, that’s my plan. I want Jack to be able to ask any question he wants and know he’ll get a honest answer.  I don’t want a lack of knowledge to make him fearful of anything in life.

That’s what has inspired the book I’m currently working on. Too many children are not exposed to disability and then when they do come across it, they are unsure what to do. I’ve overheard so many conversations,  where a child is asking mum or dad why I’m in a wheelchair or why I speak like that. The parent’s embarrassment often leads to both a hushed and a rushed response and I think children need and deserve more if they are going to be equipped to manage situations in the future.

As well as raising disability issues within the context of a story, my book will also offer nuggets of advice for teachers and parents, who may understandably struggle to answer those awkward questions. I hope it will enable children and parents to initiate open, honest and fulfilling conversations which help to satisfy children’s curiosity and give them both much needed “disability confidence”.

Watch out for further information, title and release dates!

Disability Awareness for Kids – Its not weird, just different.

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Access, Family, Flyinglady Training, Making a difference, and Personal

I was on a train recently, travelling home from visiting my sister and best friend in London.  After a good night out the evening before, I was feeling quite tired and hoped to pass the journey quietly with my Kindle for company.

At one of the stops, a mother with her young daughter got on and sat opposite me.  The daughter must have been around six or seven and was very chatty! There went my quiet journey home but I smiled as the little girl asked her mum question after question,  no doubt driving her mum mad!  Being so inquisitive, the little girl’s attention soon turned towards me and she asked her mum “why does that lady need a wheelchair?”

Staring out the window, I waited to see how mum would reply all the little girl got was “I don’t know” so I decided to try and help. “I have something wrong with my legs, they don’t work properly.” I told the little girl cheerily.  I hoped her mum might engage with me, if only a little bit.

Instead, the little girl turned to her mum, telling her “I sounded weird”.  I’d hoped mum might correct her and explain that the word weird wasn’t very polite but mum just asked her to be quiet – not too much avail.

The incident made me smile but it also saddened me.  Mum didn’t seem interested in engaging or educating her daughter but perhaps, more likely, didn’t know how to and maybe, was afraid of offending me.  But it really was a missed opportunity for the little girl, particularly as I showed my willingness to engage with her.

That’s why I’m so passionate about my “Disability Awareness for Kids” sessions and have decided to offer them for free until the end of this academic year.  Parents and even teachers may feel awkward about talking about disability, but it really is important that they understand the issues and get honest answers to their questions.

They need to know it’s not weird. Just different.

Cerebral Palsy: An Introduction

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Does it wet the bed?, Flyinglady Training, and Making a difference

This month is Cerebral Palsy Awareness Month so I’m going to be sharing a number of articles to raise awareness of the condition, what it’s like to live with it and the challenges that it presents.  Later this month, I’ll also be sharing advice for parents who have a child with CP and maybe some of my favourite bits from my memoir about living with the condition – “Does it wet the bed?”

What is Cerebral Palsy (CP)?

Cerebral palsy is a general term for a number of neurological conditions which affect movement and co-ordination.

Cerebral Palsy is caused by problems in the parts of the brain which is responsible for controlling muscles.  The brain becomes damaged either before, during or just after birth, or sometimes, during early childhood.

What are the three main types of CP?

Ataxiaa lack of muscle control when performing voluntary movements.  (National Institute of Health, 2011)

Spasticity Causes stiff or tight muscles and exaggerated reflexes.

DyskineticCharacterised by fluctuation in muscle tone which is either too loose or too tight.

What are the causes of CP?

  • An infection caught by the mother during pregnancy;
  • A lack of oxygen;
  • A difficult or premature birth;
  • Bleeding in the baby’s brain;
  • Changes in the genes that affect the brain’s development.

 

There will be lots more information coming over the next month, but if you’re a business who would like free staff training on Cerebral Palsy, please Contact Flyinglady to book your session.

Support for young disabled people and their families

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Equality & Diversity, and Making a difference

It’s sometimes hard for young disabled people and their families to find the support that they need and even harder to make their voices heard.

SENDIAS is a project in West Berkshire which aims to support young disabled people, up to the age of 25 and their parents/carers.  They want young people and those who care for them to have more of a say in how services for disabled children are shaped and delivered.

The service is free and confidential and advisors can help guide disabled young people through the development of Education Health and Care Plans.

 

For more information, please visit www.westberkssendiass.info

Even if you’re not in West Berkshire, they can help you find support in your area.

A knock for working parents

Posted in Accessibility, Disability and kids, Disabled Access, Disabled Parent, Family, Making a difference, Motherhood, and Personal

For almost two years now, our little boy has attended the local nursery and I’ve always said, it’s the best decision we’ve made.  Jack absolutely loves it and has developed so much under their care and I’ve never worried about him being there.  The nursery offered concessions that other local nurseries didn’t and most importantly, it’s fully accessible, unlike most of the other local nurseries.

So you can imagine our distress and disappointment recently when we received a letter, stating that not only were prices increasing but that almost all of our concessions were now being removed.  These include:

  • Changing the opening time from 7.30 to 8am and expecting parents to pay more for this reduced service. Opening at 8am puts working parents under immense pressure to get to work on time, particularly those who don’t work locally.
  • Expecting us to pay for a service when we can’t access it.  Every year, the nursery closes for two weeks at Christmas and up until now, we didn’t have to pay for this.  Now we are required to pay for the Christmas break, all bank holidays and times when we take our children on holiday – we used to get 2 weeks half price for holidays.  This totals four weeks of extra fees for a reduced service.
  • Fees are now payable upfront from September, meaning that in August (peak holiday time) parents are expected to pay double their fees.

These decisions have a massive impact on us and our families and yet they have all been taken without any consultation and without any thought or consideration for how parents will manage these changes, either practically or financially.  This is both arrogant and offhand.

As a wheelchair user, this nursery is the only nursery that I am able to get to which is fully accessible.  To make all of these changes without consultation is very upsetting, given my very limited options for childcare.

There is a meeting next week for parents to voice their concerns but we have been told already that non of these decisions will be reversed. I think this is extremely arrogant and disrespectful to parents – the people who are paying to keep their “business” afloat.  The Government offer various incentives for parents to work and then we have these changes enforced upon us – it doesn’t make any sense.

Ten misconceptions about people with disabilities

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Disabled Parent, Equality & Diversity, Fighting for Change, Flyinglady Training, Making a difference, and Personal

 

 

  1. Disabled people need someone to talk for them

“Would she like a drink?” or “How old is she?” were common questions posed to my mum when I was growing up.  People assumed just because I am disabled that I can’t speak for myself. I soon piped up with the answers, making sure they knew I had a mind of my own!

 

  1. We need to have a “carer”

Disabled people may need assistance with some daily tasks but it shouldn’t be assumed, as is often the case, that we need full time care. Before getting married, I lived completely independently in my own flat and I am very capable of looking after myself.

 

  1. Disability prevents you from leading a normal life

Disability doesn’t exclude normality! I’ve achieved all the things that anyone else might expect to achieve, my disability hasn’t got in my way.

 

  1. Disabled people aren’t capable of being in employment

This simply isn’t true; there are countless jobs that disabled people can do – employers just need to start putting ability before disability! I held down a full time job for seven years before becoming self-employed and I helped dozens of other disabled people to find employment.

 

  1. People in wheelchairs can’t walk at all

I love the looks of surprise I get when I get out of my wheelchair in the company of strangers!  Wheelchairs are often used because walking is difficult, not because it’s impossible.

 

  1. Disabled people aren’t able to become parents

Being a disabled parent presents additional challenges but with time and thought, these can be overcome.

 

  1. Disabled people will pass on their disabilities to their children

Not all disabilities are hereditary so in many cases, it isn’t possible for a disabled parent to pass on their disability.

 

  1. If you have a disability, you must be on medication

Although medication can sometimes help to control some symptoms of some disabilities, it shouldn’t be assumed that all disabled people take medication. And it definitely shouldn’t be assumed that we can’t enjoy a tipple or two!

 

  1. If you are born with a disability, you’re extremely brave

Lots of people have said to me, “You’re so brave.”  But I don’t see myself as brave because I’ve always had a disability and it’s part of me – I wouldn’t know any different.  If you have a disability, you just get on with life in the best way that you can.

 

  1. Living with a disability is always bad and negative

Far from!  Speaking personally, I wouldn’t change my situation for anything, my life wouldn’t be as good without my disability. Although I’ve experienced discrimination and ignorance, the positive experiences far outweigh the bad.

 

If you have a disability and could add anything to this list, please contact me.  If you’re interested in Disability Awareness Training,  please contact Flyinglady Training.

New writing projects – feedback very welcome!

Posted in Accessibility, Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Does it wet the bed?, Flyinglady Training, Making a difference, and My writing

This time last year, my new year’s resolution was to get my memoir, “Does it wet the bed?”, published. It was an ambitious goal as the manuscript was barely finished. But with lots of hard work and determination,  I fulfilled my resolution . . . for once!

This year, I have two writing projects which I want to pursue, though I am not going to promise that either will be finished, as I have other work projects in mind.

Firstly, I plan to write a “Disability Etiquette Guide”, to help people gain a better understanding of the issues surrounding disability. I know from experience, lots of people find disability awkward; they don’t know how to approach disabled people and worry about doing or saying the “wrong” thing.  The aim of the guide will be to put people’s minds are rest and to honesty answer the questions that they have.  The guide will cover communicating with disabled people, how and when to offer assistance, the correct language as well as the language to avoid and best practice in a number of situations.

This is my basic plan for the book but I’d really like suggestions from you as to what you would like to see included.  If you have a few minutes and would like to help me, please consider the following questions and contact me with your thoughts:

  • What would you most like to know about disability?
  • What concerns you about interacting with disabled people?
  • What do you think are the common misconceptions about disabled people?

 

I’d really love to hear your thoughts and will do my best to cover all the points I receive.

Secondly, I plan to start a Children’s Book to help teachers and parents to explain disability.  I recently spoke to a mum who was unsure about how to answer her son’s questions about me – she wanted to give him the answers he needed but was worried about offending me. I hope I was able to offer her some reassurance as I explained the best things to say and it cemented my desire to write a book which will help parents to answer those tricky questions with confidence. I haven’t quite decided on the format or style, but if you’re a parent and have any thoughts, please get in touch.

With other training projects and my new role as Trustee of CP Sport, 2016 is set to be a very busy year