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Category archive for: Personal

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.

Challenges of a Disabled Mum: Finding support & information

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Does it wet the bed?, Family, Motherhood, My writing, and Personal

Before I became pregnant with Jack, I wanted to see a medical professional who would be able to advise me on the impact that pregnancy might have on my condition, Cerebral Palsy. I wasn’t naive, I knew it would be physically tough but I wanted reassurance I suppose, that it was possible and I wanted advice on the birth. Would my spasms and general movements make a natural delivery difficult?  Would I be able to have an epidural if I wanted to? Most of all, I knew what I wanted – reassurance that the events of my own birth, which caused my CP, wouldn’t repeat themselves. I knew it was unlikely, I knew there were no guarantees in life but I also knew talking to a professional about my fears would at least help in belittling them.

But despite asking my GP and searching online, I couldn’t find anyone who seemed to specialise in supporting disabled mothers. Eventually, we decided to go private and booked an appointment with a Harley Street Consultant in Obstetrics. He specialises in high-risk pregnancies, though thankfully he assured me that I wasn’t high-risk at all!  He assured us that a natural birth would be entirely possible and that my CP shouldn’t impact much at all.  He said an epidural shouldn’t be an issue and even recommended it. We were left wondering why we’d troubled him at all!

Nonetheless, it was just what I needed to hear and shortly after that appointment, I became pregnant.  At this point, I began looking for other types of information and support.  I wondered how I would cope with feeding, dressing, changing nappies and though I was aware of a couple of other disabled parents, panic set in!  Just how would I manage?!

But again, finding information was absolutely fruitless. It was as if disabled people just didn’t have children, like it wasn’t normal. Most of the support I found was for parents of disabled children and not the other way around.  I emailed the Disabled Parent’s Network but never received a reply and their website didn’t really provide much insight into the practicalities of being a disabled parent.

When our gorgeous boy finally arrived, I still wasn’t exactly sure how I’d do things but with the enduring support of hubby, I was determined to find MY way and in fact, it’s amazing how quickly and instinctively I learnt. I wore holes in all my jeans pushing Jack around the house in his moses basket because I couldn’t lift and carry him.  As he got bigger, my knees continued to suffer as I carried him short distances whilst walking on my knees!!

Although I developed my own ways, I still think it would have helped my confidence to talk to other disabled parents and chat about how they manage. That’s why I wrote my book and started this regular blog – even now, there needs to be much more awareness of disabled people and what we’re capable of.  We should be sharing our stories, good and bad, in order to support and encourage each other.  And as always, society as a whole needs to be more aware, as many people have been very surprised to learn that I’m a mummy!

If you’d like to share your story as a guest blogger, I’d love to hear from you!