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Category: Disability Awareness

Wheelchair Woes… finally resolved

Posted in Accessibility, Cerebral Palsy, Customer Service, Disability Aids, Disability Awareness, Fighting for Change, Personal, and Wheelchair

Those of you who follow my blog will know of the issues I had over the summer with my electric wheelchair. At the time of writing my last blog, I was awaiting new batteries having only just had another fault resolved.

The drama continued to unfold as a new set of batteries were sent and discovered to be faulty. You couldn’t make this stuff up if you tried! Our summer holiday was fast approaching and after almost two months, I still didn’t have a reliable wheelchair and  I was beginning to doubt how much fun our Center Parcs break would be.

At this point, I was pretty fed up with Invacare, the manufacturer. Up until this point, they didn’t seem too concerned about their catalogue of errors and the effect it had had on my life. However, I think they knew I was at the end of my tether. One evening, I received an email from the team apologising for all the inconvenience and offering us a family day out to Legoland! I was absolutely delighted. Our little boy had missed out on so much because I couldn’t take him anywhere and I knew this would help make up for it!

The next day I also received a bouquet of flowers from Invacare which was also a much appreciated surprise. But better was to come when my wheelchair was finally returned to me that evening, with new batteries! With just two days until our holiday, I was delighted to finally have it back and kept my fingers crossed that my wheelchair woes were finally over!

I should never have been left so long without my wheelchair, particularly when it’s not even a year old, but I do appreciate the effort Invacare went to in order to put things right.

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.

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.

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.

Challenges of a Disabled Mum: The School Run

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Disabled Parent, Education, and Family

How the time flies! It doesn’t seem five minutes since I was breastfeeding and watching my little boy learning to walk. Now, he’s just started school and I’m just like any other mum doing the school run every day.

Well, not quite. The school run can be stressful enough but add a wheelchair to the mix and stress levels go through the roof! Luckily, Jack went to nursery school last year so he loves school and has settled into Reception brilliantly. But the rush of excited children and their parents has made the morning drop off quite difficult. Particularly as the route to Jack’s classroom is through the nursery area and the door had been propped open with a box of toys, limiting the width of the door!

However, I knew the school were very supportive of me so a quick email sorted out the door issue. Now to just try and drop little man off without running over any little toes! I try to get to school early so that we’re first in and at least I can say goodbye to Jack and then very slowly make my way out, facing the stampede of children!

I try to leave Jack at the classroom door as if I do go in, I find it difficult to manoeuvre around and watch for little people, who don’t yet have an awareness of me!! Then I try to find a quite space to let everyone else pass, before leaving the building. By the time I get home, my nerves are shot and I’m just relieved to have done another successful drop off without incident!

There’s no answer to this, children are children and it’s on me just to be very careful. But I do wish I had eyes in the back of my head!

Open Letter to All Bus Drivers – from a Wheelchair User Passenger

Posted in Accessibility, Cerebral Palsy, Customer Service, Disability Awareness, Disabled Access, Education, Equality & Diversity, Personal, and Public Transport

You see me waiting at the bus stop and I try to search your face for a clue as to which camp you fit into.  You see, you fit into two camps and sometimes I can’t tell until you pull up and open the doors. All the time, I’m filled with dread and anxiousness, wondering if this time I’ll have a fight on my hands. Whether I’ll be welcomed or made to feel like a complete and utter nuisance.  Quite often it’s the latter.

Some of you are friendly, welcoming and seem to understand that I have as much right as anyone else to use public transport.  You go out of your way to gently lower the ramp for me, to ask where I’m getting off and to make sure that the wheelchair space is clear.  If it’s occupied by a pushchair, you politely ask them to move or fold it up.  You kindly help me to position my chair into the sometimes stupidly difficult spaces which aren’t really suitable for wheelchairs at all.  When I get off, you share a friendly word and wish me well.  I feel like a valued passenger.

Unfortunately, I don’t feel as welcomed by some of your uneducated colleagues who openly grimace when they see me waiting for their bus.  One of two things can happen at this point.  They either refuse to let me on, saying their bus is too full or that the wheelchair space is full.  They seemed to have completely missed the memo that the wheelchair space is for the use of wheelchair users and that this is law.  They refuse to ask other passengers to move, for fear that heaven forbid, their bus might end up late or their shift might overrun.

Or they make it crystal clear that I’m a nuisance for needing their assistance.  They huff and puff as they climb out of their cab, then slam the ramp down in front of me. They don’t care if other passengers are blocking the wheelchair space, which I’m supposed to reverse into.  That’s my problem, I’m supposed to ensure I’m safe and ask fellow passengers to move, even at peak times.  I’m made to feel like an inconvenience, a problem and I’ll tell you now – it makes me feel like utter crap.  That’s probably the first time I’m sworn on my blog but it’s the only way to convey how it makes me feel.

How I feel when that treatment makes me late for work or late to collect my son from school.  Yes, that’s right, I’m just like you. I have commitments and I’m trying to get somewhere just like everyone else.  I’d like to get home after a day’s work, just like you.  I’d like to get home without dealing with your attitude because it STINKS.

So thank-you so much if you fall into the first camp; you make my life as a disabled wheelchair user so much easier.

May I suggest, that if you sadly fall into the second, that you consider a career change.  You’ve clearly misunderstood that your job isn’t about just driving a bus. It’s about transporting passengers – whether we’re disabled or not.

My “PIP” journey: Please don’t treat me as a number

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, and Personal

Tomorrow is my PIP assessment and for those who are not familiar, PIP stands for “Personal Independence Payment” and is replacing Disability Living Allowance (DLA).

I’m nervous for two reasons: a) I’ve heard and read about many people who have had a bad experience of the PIP assessment process and b) my experience thus far hasn’t been great. When I phoned to start my application, the delightful lady I spoke to was more like a robot than a human being. She refused to listen to me or answer my questions until she had completed her “script” and the whole conversation felt very impersonal and forced. It didn’t fill me with confidence for the rest of the process, put it that way.

Regardless of the assessment outcome, I just hope I’m listened to tomorrow and not just treated as a “number”. I hope the assessor understands the complexity of disability and isn’t just fixated on the medical side.  I hope they take the time to listen to my speech and not rely on my husband as an interpreter. I hope they appreciate that my disability is different from day to day and that 15 minutes cannot paint an accurate picture of living with Cerebral Palsy every day.

Most of all I hope I’m treated as a human being!! More to follow!

Building an inclusive, more tolerant future

Posted in Accessibility, Disability and kids, Disability Awareness, Education, Equality & Diversity, Fighting for Change, Media, and Schools

I just posted on my Flyinglady Website about how I love going into schools and doing Disability Awareness sessions for the children; I’m so passionate about it that I offer the sessions for free wherever I possibly can.

The sessions help kids to understand that everyone is different and that’s a good thing; life would be incredibly boring if we were all carbon copies of each other.  I go on to try and help the kids to understand how they help people with disabilities and explain how including everybody is so important.  Inclusiveness, in simple, age appropriate language.

Now, as I sit watching the news of yet another, hate driven, evil terrorist attack, I feel despair the same of everyone else. I fear for my little boy and a friend tweets her advice that “All we can do is be the change and teach our children better. The majority of people are good.”

And we are.  The world is full of good, kind, peace loving people and we need to teach our kids – our future – to be the same. Teach them that it’s OK to ask questions, to be curious and that they must be accepting of differences. We need to teach them from a young age about diversity and that age, sex, disability, ethnicity, sexuality and religion make each of us who we are. We’re all different, all unique but ultimately, we’re all human beings and that’s the bottom line which needs to be respected.

So let’s have Disability Awareness on the curriculum but let’s also give Equality and Diversity generally a higher priority from a young age.  Let’s invite a range of people, from all walks of life, to give presentations to schools and allow our children to explore these issues. Let them ask the questions that perhaps their parents would struggle to answer. Let them learn from personal experiences, not just teachers and books.  Perhaps adopting such an approach will help us create a much more tolerate society for our future.

Challenges of a Disabled Mum: Capturing Memories

Posted in Accessibility, Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Family, Motherhood, and Personal

It’s something most parents don’t even think about. Quickly grabbing the camera to capture your child’s first of something is what every parent has done at some point. Indeed, my hubby has thousands of pictures capturing everything from Jack’s first taste of sweet potatoes to his first attempt at writing his own name.  Each are being kept safely for the day he brings home his first girlfriend!

But for me on my own, it’s not so easy to capture these precious moments, though I do my best. By the time I get my phone or camera out and then steady myself enough to take a decent photo, the moment is often lost. On Jack’s first day of school nursery, Jack very nearly threw an understandable tantrum as I begged him to keep still, click after click, until I managed to keep steady enough.

 

 

I was therefore very touched at a recent Mother’s Day assembly when another parent kindly offered to take some videos and photos of Jack and send them to me.  Each child had to stand up and say a line about why they loved their mummy and it was a moment I wanted to focus on (pardon the pun!) rather than be worrying about recording it.  I was able to laugh as Jack told the whole assembly that I “put on her lipstick and then she dances!”   Two things I definitely never do but a moment to treasure forever, none the less!

Thanks so much to the parent who was so thoughtful and enabled me to just enjoy a wonderful Mother’s Day assembly!