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Category archive for: My writing

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.

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!

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!

Meryl Streep should be applauded for challenging Mr.Trump

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Parent, Media, My writing, and Personal

I don’t normally write about anything remotely political on my blog – preferring instead to make the odd rant on Facebook, if something really bothers me.  But this week, something and someone political has tipped me over the edge because it’s more than just politics – it’s about equality.  Anyone know where I’m at yet?

Yes, that’s right: Donald Trump, our US president-elect. Meryl Streep has used her Global Globe acceptance speech to attack Mr. Trump for mocking a disabled journalist working for the New York Times, Serge Kovaleski, who dared to report on Trump’s claim that thousands of US Muslims celebrated the collapse of the World Trade Centre.

Streep said she was heartbroken by Trumps imitation of the journalist and I absolutely applaud her comments. I am extremely proud and thankful that someone who has influence has been brave enough to bring this to the forefront of the media’s attention again.  But her comments have also being endlessly criticised, with many saying Streep could have used her to speech to urge Trump to promote equality and unity going forward. Many people were extremely critical of this pitiful man during the election campaign, but now, suddenly we’re meant to get behind him and hope against hope, that everything will be OK?

I strongly disagree. It is wrong and cowardly for anyone to sweep this behaviour under the carpet, just because in 7 days time this rude and ignorant man will be the (so-called) most powerful man in the world.  Why does that give him the right to abuse woman, mock disabled people and generally disrespect anyone who doesn’t agree with him?

In Trump’s defence, people have claimed he’s mocked others in exactly the same way and Trump himself has said he wasn’t mocking him but I think I may just send Mr. Trump a dictionary as an inauguration gift. Claiming to “not know” about Kovaleski’s condition is no excuse (not that I believe him) – when you’re in the position Trump was and is now in, you make it your business to know.

As a disabled person with Cerebral Palsy and a woman, Trump has shocked and offended me numerous times; the fact he is about to become US President is unbelievable. But this is what’s worse: disabled people have fought for years and are still fighting for equality and to be accepted into society. Yet Trump, the soon-to-be most influential man in the world, and his fans think it’s acceptable to mock disability and then defend his actions. And then they attack someone who is prepared to make a stand for disabled people.

I fear for America and equality over the next for years.  Well done Meryl for making a stand,