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Category archive for: Disability Aids

Disability Etiquette equals good manners & common sense

Posted in Accessibility, Cerebral Palsy, Customer Service, Disability Aids, Disability Awareness, Disabled Access, Equality & Diversity, Fighting for Change, Flyinglady Training, Media, and Personal

My latest book, “A disability Etiquette Guide” is something I’ve been wanting to write for a while now and last week, I was reminded why it’s so important for me to write it.

I was on my way to Nottingham, to the Charity CP Sport, of which I am a proud trustee. I asked for the ramp to be put down  as I use an electric wheelchair. It’s a popular train but I was absolutely astounded by my fellow passengers, who proceeded to rush on to the train whilst the customer service guy was attempting to put the ramp into position for me.

They all rushed past him and me, desperate to claim a seat and a place for their luggage. Never mind thinking about me and how it might be easier for me to get into the wheelchair spot when the carriage is relatively clear of passengers and luggage.  Never mind simple manners and common sense.

One passenger even walked up the ramp in front of me! Unbelievable!

And that’s the essence of my book: Good manners and applying common sense can go a long way in improving the lives of those with disabilities.

Facing a diagnosis of Cerebral Palsy: Hope for Parents

Posted in Cerebral Palsy, Disability Aids, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Equality & Diversity, Family, and Motherhood

 

I must admit to being a bit of a soap addict.  I was thrilled to see “Emmerdale” doing their bit for Cerebral Palsy Awareness Month, following the difficult birth of Megan and Jai’s baby girl.

The doctors have advised the new parents that due to complications during the birth, which meant the baby suffered a lack of oxygen, she may now have Cerebral Palsy. Though I remember that “it’s just a story,” I have much sympathy with the characters who have no clue about what Cerebral Palsy is or what the future might hold.

It’s scary.  Hard to believe. You don’t know where to turn and at this stage, the doctors can’t make any promises or offer any kind of reassurances. The future now seems like an up hill battle, with the summit seeming unattainable.  That’s how many parents feel when being told their child has Cerebral Palsy – a condition for which there is no cure.  I have no doubt that is how my own parents felt, thirty something years ago, when they were told the same thing about me.

There was no internet back then, nowhere to seek reassurance and all they could do was take one day at a time.  They could only hope and pray that the dim view that the doctors painted of my future was wrong. And indeed it was.

Despite my physical limitations, Cerebral Palsy didn’t rob me of either my intelligence or my desire to lead what some might call, a “normal life”.  Despite many sceptics, I enjoyed a mainstream education which ended in me graduating with a 2:1 Honours Degree from Oxford Brookes University.  I went on to secure full-time paid employment and became a successful manager in a small Disability Charity.

But I also had other dreams and ambitions that when I was born, 33 years ago (almost!), would have been deemed impossible, unthinkable even by those who knew of my fiery and determined personality.   I daren’t even voice my dreams but I knew that I wanted two more special roles:  A wife and a Mother.

Who would have thought, all those years ago, that those dreams would also be realised? On 3rd September 2011, I took some shaky steps down the aisle and became wife to Dean, with the most amazing wedding. Then on 28th June 2013, I became Mummy to the most beautiful little boy, Jack James.

If my parents could have looked into the future and known the life that lay ahead of me, that diagnosis of Cerebral Palsy wouldn’t have seemed half as bad. Yes, there were challenges and it wasn’t always easy but my parents and I maintained two things: hope and determination.

So what would I say to parents facing the same diagnosis?  Firstly, don’t jump to conclusions.  Cerebral Palsy affects everyone differently and it’s important not to make assumptions before you know the facts.  Secondly, a disability isn’t the end of the world and if you don’t believe me, read “Why I love having Cerebral Palsy.” Finally, just don’t give up.  It can seem hopeless, like your life or your child’s will never be the same.  But with hope, determination and a good sense of humour, the future can and will be brighter than you imagine it to be!

Why I love having Cerebral Palsy

Posted in Accessibility, Cerebral Palsy, Disability Aids, Disability Awareness, Disabled Access, Does it wet the bed?, Equality & Diversity, Fighting for Change, Media, and Personal

This week is Cerebral Palsy Awareness Week, with tomorrow being World CP Day.  I’ll be live on Twitter between 1-2pm GMT to answer your questions about cerebral palsy, my life living with the condition and about my memoir, “Does it wet the bed?”.  But in the meantime, here’s why I love having Cerebral Palsy. . .

I get to drive without a licence

I’ve failed my actual driving test SEVEN times! But I don’t really mind as I still get to speed around in my Spectra XTR2 wheelchair and go anywhere that I want to go.  Who needs a car?!

I get free botox injections

But not for cosmetic reasons!  Botox can be used to help tight and stiff muscles which is a symptom of cerebral palsy.  I had it to relieve tightness in my arm and it was really effective, giving me back the full use of my arm.

Watching people’s reactions as I get out of my wheelchair and start walking

One of the major misconceptions I come across is that people who use wheelchairs can’t walk.  I love watching the surprise and sometimes apprehension on people’s faces when I suddenly get out of my wheelchair!  After a few seconds of watching their reaction, I reassure them that I’m absolutely fine!

Not having to queue at theme parks

Probably my favourite reason!  I’m a real dare devil, the bigger the ride, the happier I am and not having to queue is certainly a good perk to having a disability!

Being able to disguise when I’m tipsy

My cerebral palsy causes me to tremble quite a bit but when I have a few drinks, it calms my spasms and makes my speech much clearer!  Nobody can tell when I’m a bit worse for wear!

“Don’t take my baby” – Disabled Parents under Scrutiny

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

I recently sat down to watch, “Don’t take my baby”, a factual drama which tells of a disabled couple’s fight to keep their newborn baby daughter.  It’s a subject close to my heart as a disabled parent myself.

The mother had a physical, life-limiting disability whilst the father was partially sighted and his condition was expected to deteriorate.  As soon as their daughter was born, social services began accessing their capabilities as parents and their every move was scrutinised.  Rather than being supported in their new role as parents, they were automatically assumed incapable and put under the enormous pressure of having to proof that they could look after their little girl. Any parent, disabled or not, would struggle to cope whilst their every move was being observed and their every little mistake noted down.

After four months of cruelling assessment and observation, the couple were eventually deemed capable parents and they were allowed to keep their little one.  The programme brought me back to the early days of my pregnancy, when I used to fret that I could be deemed an unsuitable parent and that “someone” might try and take my baby away from me.

I remember voicing my concerns to my midwife during my first appointment.  Even though I had a supportive family and an able bodied husband, I worried that my disability would raise concerns.  My midwife assured me that nobody would be taking my baby from me and that everything possible would be done to enable me to look after my baby.  I felt reassured and I was confident that once my baby was born, I’d find my own ways of caring for him and that my disability wouldn’t prevent me from being a good mum.

Although I had a lot of support during my pregnancy and special arrangements were made for the birth, this is where the support stopped.  My husband Dean and I went home with Jack and as a family, we found the best and safest ways for me to care for Jack.  It wasn’t easy to begin with but Dean took time out from work to be with me so that I could gradually build my confidence in doing things for Jack.

Nobody offered us any help or an assessment for things which may make life easier. It was just assumed that we were OK and although this was true, I am left wondering who makes the decisions about who should be assessed and who is left to get on with it.

I am grateful that nobody thought it necessary to interfere; my baby is now 2 years old so I think I’ve proved that I am very capable of being a mum.  But I am also saddened and angry that other disabled people are being presumed incapable just because they have a disability and are being put under such intense scrutiny.

Disabled people have just as much right as anybody else to become parents.  As a society, we should be providing as much support as possible and enabling disabled people to fulfil their potential; not automatically and naively judging them based on nothing more than assumptions.

Does it wet the bed? – Free Wheeling

Posted in Cerebral Palsy, Disability Aids, Disability Awareness, Does it wet the bed?, Fighting for Change, My writing, Personal, and Uncategorised

I’m just putting together a book proposal for “Does it wet the bed?” as even though the  book is almost complete, many agents request a proposal as well as sample chapters.

In doing so, I’ve chosen an anecdote to start the overview so I thought I’d share it here! More to come over the coming weeks.

I was at work and my electric wheelchair had broken down. Again. The phone number for the repair service was down ingrained on my memory and I braced myself for another frustrating conversation as I dialled it.

As I’d expected, there were no engineers available for the next three days. The receptionist really didn’t understand the seriousness of the situation and after so many call outs, I was on the verge of losing my patience. I took a long, deep breathe and asked how she expected me to get home safely that evening. Her response was deadly serious: “Can’t you free wheel it home?” It took me a minute to process what she’d said and I almost asked her to repeat herself, just to be sure that I’d heard correctly. Maybe I had wax in my ears? But no, I’d heard her alright and my blood was absolutely boiling. I had to make my explanation to her crystal clear this time:

“If I was capable of free wheeling an electric wheelchair home or anywhere in fact, I wouldn’t require the wheelchair in the first place, would I?.”