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Category: Personal

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 . . . Sadly Continued

Posted in Accessibility, Cerebral Palsy, Cerebral Palsy Sport, Customer Service, Equality & Diversity, Fighting for Change, Personal, and Wheelchair

If you have read my last blog, you’ll be aware of my current wheelchair issues and the frustration it’s causing.  At the time of writing my last blog, I stupidly thought I was nearing the end of my issues. Little did I know there was further drama in store.

Frustrated by being told I’d have to wait over two weeks for a part to be shipped from Germany, I decided to pile the pressure on to the manufacturer, Invacare, with regular tweets and emails – highlighting how not having a functional wheelchair was severely impacting upon my independence – please follow @ACBlackborough if you don’t already!

Invacare’s responses were typically along the lines off “we’re sorry and we’re looking into it” which wasn’t really cutting mustard with me at this stage. But then I receive an email, telling me the part would be dispatched that day for delivery tomorrow. Though obviously very happy that two weeks had been reduced to a day, it begged the question why this hadn’t be done to start with? A question which Invacare have declined to answer.

Despite this, I was thrilled at the prospect of getting my wheelchair, and my independence back, after just shy of 5 weeks.  My excitement was dashed when the dealer phoned to break bad news – the part had duly arrived as stated but it was faulty.  After so long, I was unsurprisingly fuming.

Again, Invacare said another part would be despatched for next day delivery. In the five weeks without my wheels, my life had effectively been put on hold. I’d had to cancel numerous plans including work commitments. My spare chair, brought at further expense, is very basic – limiting me to local, essential trips only and even a basic requirement like food shopping, has been really problematic.

So you can imagine my joy when the wheelchair was finally returned to me last Saturday afternoon.  I made plans for the coming week and promised my little boy some trips out.  I committed to attending a meeting in Nottingham, where I am proud chair of Cerebral Palsy Sport.  Life could finally return to normal. Or so I thought.

As soon as I took the wheelchair out, I noticed the battery was behaving oddly – dropping power almost immediately.  Having used electric wheelchairs for the best part of 20 years, I was pretty sure something wasn’t right but I decided to give the chair a couple of long charges before reporting a problem.  Again, I felt limited as to what I was able to do and decided to carry the charger with me, just in case.

When I arrived in Nottingham, the chair was displaying low power so I plugged it in during my meeting and phoned the dealer – Easy Living Mobility – who have been amazing and arranged to visit me the next day.  Despite charging the chair at work, I only just made it home that night – with the chair giving up the ghost on our driveway.

The next day confirmed my fears – the battery was most probably failing and the wheelchair would have to be taken away again to be tested. I’d have to wait 4-5 days for new batteries.  I was utterly fed up – my plans for the next few days turned upside down YET AGAIN.

And what do I get from Invacare?

“We’re working with the Invacare Retailer to resolve this as quickly as possible.”

No apology, no concern for how I’m coping without my lifeline.  I count this now as six weeks – for six weeks I’ve been without a reliable, fit-for-purpose wheelchair but it really seems like Invacare couldn’t give a damn.  They have my money – almost £8000 – and beyond that isn’t their concern.

I’ve only had my wheelchair for 9 months and due to various faults, it has been out of action for 2 of those months.  Considering they talk about keeping people mobile as part of their marketing, I think most would agree that Invacare is failing, miserably.

Challenges of a Disabled Mum: Game of Cat & Mouse!

Posted in Accessibility, Cerebral Palsy, Disability and kids, Disabled Parent, Family, Flyinglady Training, Motherhood, My writing, and Personal

Like most parents, I’m breathing a sigh of relief now that the kids are back at school. It’s a challenge for any parent, trying to keep kids entertained whilst not spending an absolute fortune. This was also the first time that I felt confident in taking Jack out and about independently, using public transport – though you might like to read more about that particular issue here. Jack is now of an age where, for the most part, he listens to me and understands the need to stay close to me when we’re out. With the exception of the soft play, that is.

On the last day of the holidays, I decided to treat him to a McDonald’s followed by a session in the soft play centre. We normally go and meet other kids and their mums, so he has someone to play with and I have the moral support of other parents. I wasn’t entirely sure if it would work on his own but as the weather was dodgy, I decided it was a good way to pass a few hours.

I made sure Jack knew where I was and that he needed to listen out for the lady, who would call out our colour when it was time to leave. All was well and I kept an eye on him from where I was sitting. Jack kept coming back to me, mostly to complain that he was hungry! But time ticked on and it was almost time to go so I decided to gather our things and get Jack out.

As it had got slightly quieter, they weren’t enforcing the time limit so Jack had no way of knowing when to come out. So I went to the edge of the play area and starting trying to get his attention. But do you think I could catch his eye or make him hear as I called! Nope! It was like a game of cat and mouse – he’d run the other way just as I’d got in a position to catch his eye! He couldn’t hear me call him above all the noise and after 10 minutes or so, I was ready to give up! Then another mum kindly offered to go in and tell him to come to me.

Another cat and mouse game commenced as she entered the soft play and tried to find him for me. She was anxious about approaching the wrong child, as I tried to follow her and she pointed kids out! I was now trying to keep track of two people from the ground and directing her towards him! It was all quite funny but eventually the kind lady tracked Jack down and he came out.

It’s not a major issue and it provided some entertainment but it’s just one of the things that make me slightly anxious about venturing out alone – those unexpected challenges!

Happy New Year – That’s life!

Posted in Cerebral Palsy Sport, Family, Motherhood, My writing, and Personal

Happy new year!! It’s that time again when we make promises to ourselves about how we’ll lose weight or give up something and yet we all know, by the end of January it’s all long forgotten! 

Last New Year, I made a very public resolution that I would get my second book published.  As it’s a children’s book and I’d already started it, I felt absolutely sure that I’d set myself a realistic goal. Until around about the 15th January when this little thing called “life” began getting in the way! Firstly, I unexpectantly became Chairman of Cerebral Palsy Sport.  Don’t get me wrong – it’s a role I’m very proud to hold and I love the challenges it throws at me. But it is a time consuming role which I’ve been getting used to.

Secondly, at the beginning of April, my hubby had to take a contract away from home for 3 months, leaving me to look after our little lad during the week. It was a challenging time for us all, particularly as it was unexpected and the energy I poured into keeping things ticking over left me little time for my own work.

Before I knew it, Christmas was within sight and I felt like I’d failed – despite everything that I had achieved in other ways.  “Life” had won and taken me away from where I’d liked to have been but in a funny way, I was glad. I was and still am enjoying my role as Chairman and I’m learning so much.  Hubby working away was probably one of my toughest challenges of 2017, especially as little man still hadn’t grasped the idea of sleeping through the night! But we both look back on it now as a positive experience which pushed me as a parent and really boosted my confidence.

So there are no resolutions this year, no feeling like I’ve failed – I’m just going to go with what life decides and be grateful for whatever I learn along the way!

Though that’s not to say that I won’t try my best to get that book closer to publication!! 

 

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.

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!

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!

 

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.