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Category: Disabled Access

A little bit of knowledge . . .

Posted in Customer Service, Disability Awareness, Disabled Access, Equality & Diversity, and Fighting for Change

As a disabled person, I consider myself to be fairly lucky.  Yes, I face physical challenges on a daily basis but they haven’t stopped me from living a fulfilling life, getting a good education, raising my own family or running my own training business. I was fortunate enough to be born at a time when people’s attitudes towards disability were beginning to change and being disabled wasn’t seen as such a tragedy.

But, even now, some thirty years on, some people’s attitudes are firmly stuck in the past, in a time when the Medical Model of Disability dominated and disability was viewed as an individual problem, rather than a challenge for society to overcome.  In the space of just a few weeks, I’ve experienced three different incidents where customer facing staff have failed to cater for my disability, causing upset and distress.  In the first incident, the staff member didn’t have the patience to just listen to what I was saying, instead expecting a family member to speak for me.  In a second, similar incident, the staff member made absolutely no effort to understand me and refused to let me talk to another member of staff. With the third incident, I was made to feel like a nuisance simply because I required a ramp in order to access a service.  In all three cases, it was absolutely clear that the staff members hadn’t received Disability Awareness Training or at most, had fallen asleep in the middle of it.  This despite the fact that disabled people in the UK have a huge spending power (£80bn I’m told) so an investment in such training would pay off in no time.

So yes, I still consider myself lucky, but it is attitudes which still need to change.  A little bit of knowledge would go a long way in improving the lives of disabled people even more . . .

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!

Cerebral Palsy: An Introduction

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Does it wet the bed?, Flyinglady Training, and Making a difference

This month is Cerebral Palsy Awareness Month so I’m going to be sharing a number of articles to raise awareness of the condition, what it’s like to live with it and the challenges that it presents.  Later this month, I’ll also be sharing advice for parents who have a child with CP and maybe some of my favourite bits from my memoir about living with the condition – “Does it wet the bed?”

What is Cerebral Palsy (CP)?

Cerebral palsy is a general term for a number of neurological conditions which affect movement and co-ordination.

Cerebral Palsy is caused by problems in the parts of the brain which is responsible for controlling muscles.  The brain becomes damaged either before, during or just after birth, or sometimes, during early childhood.

What are the three main types of CP?

Ataxiaa lack of muscle control when performing voluntary movements.  (National Institute of Health, 2011)

Spasticity Causes stiff or tight muscles and exaggerated reflexes.

DyskineticCharacterised by fluctuation in muscle tone which is either too loose or too tight.

What are the causes of CP?

  • An infection caught by the mother during pregnancy;
  • A lack of oxygen;
  • A difficult or premature birth;
  • Bleeding in the baby’s brain;
  • Changes in the genes that affect the brain’s development.

 

There will be lots more information coming over the next month, but if you’re a business who would like free staff training on Cerebral Palsy, please Contact Flyinglady to book your session.

A knock for working parents

Posted in Accessibility, Disability and kids, Disabled Access, Disabled Parent, Family, Making a difference, Motherhood, and Personal

For almost two years now, our little boy has attended the local nursery and I’ve always said, it’s the best decision we’ve made.  Jack absolutely loves it and has developed so much under their care and I’ve never worried about him being there.  The nursery offered concessions that other local nurseries didn’t and most importantly, it’s fully accessible, unlike most of the other local nurseries.

So you can imagine our distress and disappointment recently when we received a letter, stating that not only were prices increasing but that almost all of our concessions were now being removed.  These include:

  • Changing the opening time from 7.30 to 8am and expecting parents to pay more for this reduced service. Opening at 8am puts working parents under immense pressure to get to work on time, particularly those who don’t work locally.
  • Expecting us to pay for a service when we can’t access it.  Every year, the nursery closes for two weeks at Christmas and up until now, we didn’t have to pay for this.  Now we are required to pay for the Christmas break, all bank holidays and times when we take our children on holiday – we used to get 2 weeks half price for holidays.  This totals four weeks of extra fees for a reduced service.
  • Fees are now payable upfront from September, meaning that in August (peak holiday time) parents are expected to pay double their fees.

These decisions have a massive impact on us and our families and yet they have all been taken without any consultation and without any thought or consideration for how parents will manage these changes, either practically or financially.  This is both arrogant and offhand.

As a wheelchair user, this nursery is the only nursery that I am able to get to which is fully accessible.  To make all of these changes without consultation is very upsetting, given my very limited options for childcare.

There is a meeting next week for parents to voice their concerns but we have been told already that non of these decisions will be reversed. I think this is extremely arrogant and disrespectful to parents – the people who are paying to keep their “business” afloat.  The Government offer various incentives for parents to work and then we have these changes enforced upon us – it doesn’t make any sense.

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.

Casting Call for Extraordinary mums-to-be

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Family, Fighting for Change, Media, and Motherhood

On behalf of Curve Media

Few mums-to-be would say that pregnancy is easy or stress-free, but for some women, having a baby presents exceptional challenges.

 

Curve Media have been commissioned to make a second series of 6 x 60 minute episodes for Discovery, on the subject of pregnancy called “My Extraordinary Pregnancy”.

 

This factual series will take a look at unusual pregnancies around the world- meeting mums-to-be who are juggling the excitement and anxiety that pregnancy is expected to bring, but who might have an extra ‘something’ to take into account.

 

We’re looking for women who are experiencing their pregnancy with a pre-existing condition or disability of their own (such as dwarfism or visual impairment) or have a condition brought on by the pregnancy (like extreme cravings, or severe morning sickness).

 

We’re also looking for mums-to-be who, might have previously been told they were unlikely to conceive due to unusual gynaecology.

 

Across this observational documentary series, we’ll follow these women through their unusual pregnancies, as they and their families prepare for the birth of their baby. We’re hoping to film with the pregnant mum’s medical practitioners to help the audience understand how the expectant mother’s condition affects her experience of pregnancy medically, while the mum-to-be and their loved ones will take us through the day to day realities of their unusual pregnancy.

 

If you think you may have members, or know of families or individuals, who would be interested in the possibility of our helping them share their pregnancy story, please do call or email the My Extraordinary Pregnancy producers on 0203 179 0099 / extraordinarypregnancies@curvemedia.com – we’d love to hear from you.

 

Please note: We will use and store the personal details contained in your email and any further response, in accordance with the Data Protection Act 1998, for the sole purpose of producing the programme.

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!