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Category archive for: Personal

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!