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Category: Making a difference

Wheelchair Woes

Posted in Accessibility, Cerebral Palsy, Disability Aids, Disability Awareness, Fighting for Change, Making a difference, and Wheelchair

 

I recently tweeted about how frustrating life can be as a disabled person but how incredibly grateful I am for having such supportive family and friends. Life as a someone who is reliant upon an electric wheelchair can be very frustrating, particularly when things go wrong.

Almost three weeks ago, I had planned an afternoon out at the park with my little lad and his cousins.  It’s rare that they see each other and I was looking forward to time with my nephews and niece.  But on the way to the park, my wheelchair started cutting out suddenly. I’d turn on the power button again, only for it to cut out again after a few hundred yards. With four children in my care, I didn’t feel safe or in control. Luckily, we were meeting friends at the park but I also rang hubby to walk us back.  The chair progressively got worst and eventually, it wouldn’t move more than a metre without failing.  Hubby resorted to pushing me home and the happy, relaxing day I’d planned ended in frustration.

The wheelchair had only been purchased late in 2017, as I’d decided to leave the Motability Scheme, ironically due to slow and extremely poor customer service.  Unluckily still, the company I’d purchased it from had gone out of business a month after my purchase, meaning I had no support in such instances.  So I found a company, Northwick Associates, who unlike so many companies, were able to come out to me that day.  They seemed to understand the urgency of my predicament.  Unfortunately, the engineer who visited was unable to pinpoint the problem despite his 2 hour visit. Nevertheless, he promised that another engineer would be sent as soon as possible.

Two days later, another engineer arrived who seemed to empathise with me and understand that my electric wheelchair is the absolute key to my independence.  He’d spent time the night before his visit studying the wheelchair manuals to try and find the problem.  With some wriggles and jiggles, it seemed he had cleared the error and just to be sure, I did a short test drive and the chair was back to normal.  I was over the moon to have my independence back – it’s hard for me to convey the relief knowing my life is back to normal. Some may think I’m exaggerating but imagine someone taking your car keys or your wallet – how would that impact upon your life?

But my joy was short-lived as the next evening, Friday, the chair began cutting out again as I went to visit my parents. I rang Northwick again only to be told that unfortunately no engineers were available until Monday – at the earliest.  Imagine your car breaking down and phoning the AA or RAC, only to be told you’d have to wait two days for any assistance?!

I should explain that due to previous issues with my wheelchair, we did purchase a very basic back-up replacement in January just to ensure that I’d never be totally housebound. I soon realised though that it was literally to allow me to do the essentials locally – it is very basic and has very little umph!  Try going from driving a brand new Mercedes to a Fiesta and you’ll be on my wavelength.

Monday morning arrives and I’m on the phone again to Northwick but as timing has it, the engineers are on training and unavailable to visit until Wednesday – when not one but two engineers arrive.  Surely between them, I thought, they would identify the problem?  Unfortunately – I’m using that word a lot – they concluded that they would have to take the chair away to strip it down.

I was truly exasperated at this point – if only I’d known how far I was from a conclusion!  Three days later the engineer texted to say the fault had been found, repaired and the chair was ready. Hubby and I decided to collect it ourselves as to save some time.  Once again, the relief of getting my Mercedes back was immense!  But hubby aired caution when I mulled over a solo trip to town.

Wisely so. The next day, as I returned from the local shops, the chair started behaving weirdly – but not quite as before. I hoped it was me imagining the worst until the next day. I was doing the school run and got as far as the school grounds when the chair cut out totally, just as before. My little boy’s teacher approached to see if she could help and I had to try so hard not to disgrace myself in front of her but instead I fought to hold back tears as I tried to explain.

Having managed to get safely home thanks to hubby and a friend, I knew I needed to compose myself before once again phoning Northwick. I should stress I didn’t blame them as they had been more responsive than anyone I’d dealt with in the past, but I was to put it mildly, very frustrated at this point.

Northwick admitted they were now at a lost and offered to contact the manufacturer, Invacare, on my behalf as the chair was still under warranty. Another few days are lost until they send out an engineer.

YET AGAIN, I’m told the chair will be taken away for a thorough investigation. My only consolation is that I’m informed now that the warranty should cover it.  I’m sort of pleased to say the fault has finally being identified, but wait for it. Here comes the icing on the cake.  The replacement part I need isn’t stocked in the UK and has to be ordered from GERMANY. Yes and it was only ordered yesterday. And, oh yes, they are unable or more likely, unwilling to give an expected time of arrival.

Three and a half weeks without my wheels, my independence, my ability to travel and take my little boy to school safely – and that’s all I get.

I saw a tweet quite recently that essentially implied that disabled people should be grateful and satisfied with the progress this country has made in the last two decades to improve disability equality.

I’d have to respectfully disagree.

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.