Skip to content

Category: Cerebral Palsy

Giving people with Cerebral Palsy a voice

Posted in Accessibility, Cerebral Palsy, Disabled Access, Does it wet the bed?, Equality & Diversity, Fighting for Change, Making a difference, Media, My writing, and Personal

This week is Cerebral Palsy Awareness Week and today, 7th October, is World CP Day.  As someone with Cerebral Palsy, I’m delighted to be part of such an occasion that will highlight Cerebral Palsy, raise awareness of the condition and celebrate the achievements of those who have CP.

I’ve always found that disability and Cerebral Palsy are viewed in a negative light and both are hugely misunderstood. My recent book, “Does it wet the bed?” highlights the misconceptions that I’ve fought against, the pity which I’ve tried hard to ignore and the discrimination which I’ve refused to let destroy my confidence.  It was really important to me that people knew that having Cerebral Palsy hasn’t held me back or ruined my life.  Far from!  I’ve enjoyed a mainstream education and got a 2:1 Honours degree; held down a full time job before venturing into self-employment and most importantly to me, I’ve become a wife and mother.

As a society, I don’t think disability is discussed enough and World CP Day is a fantastic opportunity for people to learn more about the condition and hopefully, challenge their own perceptions about people with Cerebral Palsy.  I’ll be hosting a live Q&A session on Twitter between 1-2pm GMT (@Aideen23Henry)  so that people can ask questions about Cerebral Palsy, what it’s like to live with the condition and the experiences I’ve had as a result of having Cerebral Palsy. I really hope people will take this opportunity to learn more about it and that this whole week gives people with CP a voice.

But it must go beyond that.  When this week is over, we shouldn’t just forget about it.  We need to get our politicians to understand the issues which people with CP (and other disabilities) face and get them doing more to remove the barriers which still exist within society.  We need to raise awareness with employers and ask them to provide more opportunities to those with Cerebral Palsy. And we need to constantly challenge the perceptions of the general public so that eventually, there are no barriers to people with Cerebral Palsy living fulfilling and rewarding lives.

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.

Disability Awareness for Children

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Does it wet the bed?, Equality & Diversity, Making a difference, and Personal

Last week, I went to a primary school to deliver my Disability Awareness for Kids workshops. The children were taking part in a Disability Awareness week but I was apprehensive about their reaction to me; a lady in a wheelchair who didn’t speak especially clearly. I realised that talking to a group of children was much more nerve wracking than a room full of adults.

But I needn’t have worried at all. The children were very receptive and I could tell from their reaction that they were understanding me. I explained all about my own disability, Cerebral Palsy, and then talked generally about other disabilities. I really wanted the kids to understand that disability isn’t bad – it’s actually a positive thing that we’re all different, disability or not.

It’s important that children are encouraged to ask questions and have them answered as honestly as possible. I expected questions like, “How fast does your wheelchair go?” or “What’s it like to be in a wheelchair?”   But I was blown away by some of the thoughtful, sensitive questions that some of the kids asked.

“Do you like being so independent?”, came one. I was glad that the children realised that being in a wheelchair wasn’t limiting me in any way. One question puzzled me to begin with, “Do you intend to make your own community?” I wasn’t sure what the pupil meant at first but with a little cajoling and input from his teacher, I realised what he meant. I explained to him that part of Flyinglady’s aim is to help other disabled people to achieve as much as I have and that I would be working on this aspect of my business in the future.

The children kept the questions coming and always seemed content with my straight forward, honest answers. They were especially surprised to hear that I have a little boy of my own and am releasing my own book, “Does it wet the bed?”, shortly. I left each classroom with clapping and a chorus of “thank-you” ringing in my ears. It’s always good to know that I’ve made a difference.

From September 2015, the Disability Awareness for Kids sessions will be available for free to schools in the Birmingham area. To book your session, please Contact Flyinglady.

 

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?.”