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Category: Equality & Diversity

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!

Support for young disabled people and their families

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Equality & Diversity, and Making a difference

It’s sometimes hard for young disabled people and their families to find the support that they need and even harder to make their voices heard.

SENDIAS is a project in West Berkshire which aims to support young disabled people, up to the age of 25 and their parents/carers.  They want young people and those who care for them to have more of a say in how services for disabled children are shaped and delivered.

The service is free and confidential and advisors can help guide disabled young people through the development of Education Health and Care Plans.

 

For more information, please visit www.westberkssendiass.info

Even if you’re not in West Berkshire, they can help you find support in your area.

Ten misconceptions about people with disabilities

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Disabled Parent, Equality & Diversity, Fighting for Change, Flyinglady Training, Making a difference, and Personal

 

 

  1. Disabled people need someone to talk for them

“Would she like a drink?” or “How old is she?” were common questions posed to my mum when I was growing up.  People assumed just because I am disabled that I can’t speak for myself. I soon piped up with the answers, making sure they knew I had a mind of my own!

 

  1. We need to have a “carer”

Disabled people may need assistance with some daily tasks but it shouldn’t be assumed, as is often the case, that we need full time care. Before getting married, I lived completely independently in my own flat and I am very capable of looking after myself.

 

  1. Disability prevents you from leading a normal life

Disability doesn’t exclude normality! I’ve achieved all the things that anyone else might expect to achieve, my disability hasn’t got in my way.

 

  1. Disabled people aren’t capable of being in employment

This simply isn’t true; there are countless jobs that disabled people can do – employers just need to start putting ability before disability! I held down a full time job for seven years before becoming self-employed and I helped dozens of other disabled people to find employment.

 

  1. People in wheelchairs can’t walk at all

I love the looks of surprise I get when I get out of my wheelchair in the company of strangers!  Wheelchairs are often used because walking is difficult, not because it’s impossible.

 

  1. Disabled people aren’t able to become parents

Being a disabled parent presents additional challenges but with time and thought, these can be overcome.

 

  1. Disabled people will pass on their disabilities to their children

Not all disabilities are hereditary so in many cases, it isn’t possible for a disabled parent to pass on their disability.

 

  1. If you have a disability, you must be on medication

Although medication can sometimes help to control some symptoms of some disabilities, it shouldn’t be assumed that all disabled people take medication. And it definitely shouldn’t be assumed that we can’t enjoy a tipple or two!

 

  1. If you are born with a disability, you’re extremely brave

Lots of people have said to me, “You’re so brave.”  But I don’t see myself as brave because I’ve always had a disability and it’s part of me – I wouldn’t know any different.  If you have a disability, you just get on with life in the best way that you can.

 

  1. Living with a disability is always bad and negative

Far from!  Speaking personally, I wouldn’t change my situation for anything, my life wouldn’t be as good without my disability. Although I’ve experienced discrimination and ignorance, the positive experiences far outweigh the bad.

 

If you have a disability and could add anything to this list, please contact me.  If you’re interested in Disability Awareness Training,  please contact Flyinglady Training.

Bringing Disability into the media spotlight

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

 

Having a speech impairment, I’ve always hated the sound of my own voice. Not only that, but I have at times, struggled to make other people understand me.

So when I started promoting my first book, “Does it wet the bed?”, my publicists, Literally PR, asked what types of activities I’d be comfortable doing.  “Anything,” I replied, “except radio.” I feared other people disliking my voice as much as I did and turning off their radios in frustration at not understanding a word I said.

But then I paused just to think about it. Disability is still misunderstood and disabled people are still overlooked. And why? Because disability is shied away from in every aspect of life, but especially by the media.  Yes, we occasionally see disabled people on TV but I can’t never help feeling that this is a “token gesture” – disabled people are seen which is great but we are very rarely heard.  Disabled characters in my favourite soaps are a massive step forward but their lives and the issues they face on a daily basis are rarely highlighted or explored.

By shying away from radio, I realised, I was feeding the problem. So what if my speech is slow and people need to listen a little more carefully?  So what if a few impatient listeners tune out? Society needs to be more exposed to disability in order to be more understanding and accepting of it.

Since then, I’ve done two radio interviews and received brilliant feedback from both.  I’ve actually enjoyed them!  My confidence is definitely growing and I’m proud to be helping to bring disability into the media spotlight.

Interview anyone?!

Legislation doesn’t improve knowledge of disability

Posted in Disability Awareness, Does it wet the bed?, Equality & Diversity, Fighting for Change, Making a difference, and Media

Since “Does it wet the bed?” was released, I’ve done several interviews for newspapers, magazines and radio shows. Each has focused on different aspects of the book and my life but nearly all of them have included the following (or similar) question: “Have attitudes towards disability changed since you were a child?”

My answer has always been yes; things have definitely improved in the past 30 years but we still have a long way to go. Although we now have legislation to protect the rights of disabled people, this isn’t as useful as it could be because people simply don’t understand disability. They still make wild assumptions without actually knowing any fact.

I’ve never been more certain of that than when scrolling through my twitter feed this morning. I follow Cherylee Houston, the actress who plays Izzy in Coronation Street. I was outraged to read her recent tweets, describing how a complete stranger knocked on her front door and informed her partner that she was a “benefits cheat” and he was going to the papers.  Why, you might ask? Because he had spotted Cherylee, who uses an electric wheelchair, dare to take a few steps.  She therefore, must be according to him, a cheat and a liar who is only pretending to have a disability. And oh, she has a disability so she must be claiming benefits.  Ever heard the phrase, to make an assumption is to make an ass of you and me?!  He’s the only ass in this case.

Hats off to Cherylee for taking it all in her stride but this is just one incident which highlights just how much work we still need to do in this country to raise awareness of disability and stub out the ignorance which is blighting the lives of disabled people. Who gives anyone the right to knock on someone’s door and abuse them in this way?  I’m glad Cherylee wasn’t home at the time and wasn’t directly subjected to this utter trash but no doubt it was equally as upsetting and disturbing for her partner.  I hope this low-life does go to the papers as it may help to highlight the pure ignorance and stupidity which is holding disabled people back.

We can have all the legislation we like, but there is so much misunderstanding about disability and until people are educated, disabled people will continue to be the subjects of hate crime.

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!

Nerves & Excitement

Posted in Disability Awareness, Does it wet the bed?, Equality & Diversity, Making a difference, My writing, and Personal

I’ve finally finished writing my book.  Years of drafting, redrafting, agonising over the right words to convey my message, are finally at an end and I have set a date for publication: Monday 31st August 2015.

If I thought writing the book was hard, this bit is even more daunting.  Getting the formatting right, finalising the book cover, planning a successful launch and securing good reviews – these are things keeping me awake at night now! I feel like the hard work is only just beginning!  I know that selling the book will be much more difficult than writing it.

Putting your work “out there” for public scrutiny is nerve wracking and I was asked recently how I thought I would react to a negative review or comment. It was a difficult question as I really hope that everyone who buys the book will enjoy it, but I know that I have to be prepared for negative, as well as positive feedback.

But I’m also excited. I can’t wait to hear about my readers’ reactions to “Does it wet the bed?” and what they will take away from reading it.  I wonder who will read it and whether it will  alter the way they view disabled people. I wonder whether it will provoke conversation about how disabled people are treated and how society still needs to change. I hope so.

But more than anything, I hope that people will enjoy reading it as much as I’ve enjoyed writing it!

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.

 

A disappointing experience as a new Disabled Parent

Posted in Disabled Parent, Equality & Diversity, Motherhood, and Uncategorised

 

A few days ago, my husband and I went to register our new son, Jack James at Birmingham Registry Office.  It was an occasion which I was looking forward to, as I’m sure all new parents do.

However, my excitement and pride was soon replaced by upset and anger when we entered the registrar’s office.  With Jack wriggling and crying in my arms, she turned to ask me my name but as soon as I opened my mouth, she looked at me blankly, making it clear she couldn’t understand me and then immediately turned to my husband, expecting him to speak for me. As I’ve said before, I have a speech impairment but with time and a little patience, it isn’t difficult to understand me.  After all, I wouldn’t be a successful trainer if I couldn’t effectively communicate!

From then on, she directed all questions to my hubby and although he told her she was being ignorant, she ignored his comments.  I continued to try to interject, telling the registrar that I was quite capable of answering her questions but the registrar then bluntly stated that only one parent was required to regjster Jack.  In other words, my presence was not needed.

Unfortunately, Jack was very unsettled and in need of a feed so it wasn’t an appropriate time to challenge her ignorance and I left hubby to complete the process.  But I was angry and frustrated at being made to feel like I was surplus to requirements just because the registrar was too ignorant to take the time to listen to me.  She ruined an important occasion, one which I can never repeat and yet she is completely oblivious of this fact.

Since 2010, every public sector organisation has had specific responsibilities under the Equality Act to “Eliminate unlawful discrimination, harassment and victimisation and any other conduct prohibited by the Equality Act”.  So I find it incredible that three years on (as well as 17 years since the Disability Discrimination Act 1995) disabled people are still having to tolerate such ignorant attitudes and being made to feel like second class citizens.  I wonder if any other mother would be treated  this way and the answer is quite rightly, no so why should I accept such treatment?

Public sector managers, and indeed all managers, need to remind themselves of their legal and moral responsibilities and start taking steps to ensure that their staff are treating disabled people with the respect and dignity that they deserve.  They need to stop paying lip service to the legislation, stop merely ticking boxes and start taking  meaningful, positive actions to ensure that equality and diversity is truly understood and accepted  by every member of staff.