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Category: Disabled Parent

Please offer me a seat – improving travel for disabled people?

Posted in Accessibility, Customer Service, Disability Awareness, Disabled Access, Disabled Parent, Equality & Diversity, Flyinglady Training, Media, Personal, and Public Transport

 

Whilst browsing through my twitter account yesterday, I became aware of a new scheme which Transport for London are trialling, which encourages passengers to give up their seat for someone who needs it more, particularly disabled passengers.  Participating passengers will have a card and wear a badge, saying “Please offer me a seat.”

As a disabled wheelchair user who regularly uses public transport, albeit not in London much, I have very mixed feelings about this.  Although I am fortunate enough to at least always have my own seat, (thankfully!)  I am often left very frustrated by my fellow passengers attitudes, who fail to consider my needs by pushing on to trains or buses in front of me and using the designated wheelchair space as a dumping ground for their luggage. (Rather than taking the time to put it in the designated space for luggage)  It is much easier to manoeuvre my wheelchair before everyone else gets on but few people ever consider this.

So on the one hand, I think Transport for London should be generously applauded for taking the initiative to improve things for disabled people; they have identified this as a significant problem and are taking proactive steps to improve the experience for disabled passengers, particularly those who may not feel confident in speaking up to tell people what they need.

But on the other hand, I feel sad and frustrated that it’s considered that such schemes are needed. If people were more considerate and thoughtful, we would all have a much more positive experience of public transport, including disabled people.  If we all moved as far as possible, leaving the front seats available for those who need them, as is the intention, there would be less need for people to move – and be torn away from their Smart Phones! 🙂

Common sense also plays a big part.  We all need to be aware of those around us and be prepared to assist those who may need a seat or even assistance with luggage etc.

I think many disabled people may also feel self-conscious about wearing a badge which advertises the fact that they have a disability. Others may feel cheeky about asking for a seat, particularly if their disability isn’t immediately obvious. And although I understand that the scheme relies upon goodwill, unfortunately this isn’t always forthcoming and some disabled people may fear confrontation from those who question their greater need for a seat.

Despite my reservations, I hope the scheme is successful and at the very least, encourages people to be a little more considerate of the needs of their fellow passengers.

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.

New writing projects – feedback very welcome!

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

This time last year, my new year’s resolution was to get my memoir, “Does it wet the bed?”, published. It was an ambitious goal as the manuscript was barely finished. But with lots of hard work and determination,  I fulfilled my resolution . . . for once!

This year, I have two writing projects which I want to pursue, though I am not going to promise that either will be finished, as I have other work projects in mind.

Firstly, I plan to write a “Disability Etiquette Guide”, to help people gain a better understanding of the issues surrounding disability. I know from experience, lots of people find disability awkward; they don’t know how to approach disabled people and worry about doing or saying the “wrong” thing.  The aim of the guide will be to put people’s minds are rest and to honesty answer the questions that they have.  The guide will cover communicating with disabled people, how and when to offer assistance, the correct language as well as the language to avoid and best practice in a number of situations.

This is my basic plan for the book but I’d really like suggestions from you as to what you would like to see included.  If you have a few minutes and would like to help me, please consider the following questions and contact me with your thoughts:

  • What would you most like to know about disability?
  • What concerns you about interacting with disabled people?
  • What do you think are the common misconceptions about disabled people?

 

I’d really love to hear your thoughts and will do my best to cover all the points I receive.

Secondly, I plan to start a Children’s Book to help teachers and parents to explain disability.  I recently spoke to a mum who was unsure about how to answer her son’s questions about me – she wanted to give him the answers he needed but was worried about offending me. I hope I was able to offer her some reassurance as I explained the best things to say and it cemented my desire to write a book which will help parents to answer those tricky questions with confidence. I haven’t quite decided on the format or style, but if you’re a parent and have any thoughts, please get in touch.

With other training projects and my new role as Trustee of CP Sport, 2016 is set to be a very busy year

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.

“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.

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.

The Media: Friend or Foe of Equality?

Posted in Disabled Parent, Media, Personal, and Uncategorised

I recently delivered a bespoke training session for an organisation in Reading. As part of their equality objectives, they had identified some issues surrounding stereotyping so I was asked to focus on this specific area, addressing the causes of stereotyping and its impact.

So what causes individuals and society to refer to people using negative stereotypes?

With regard to individuals, a person’s upbringing, their community, fear of the unknown and simply ignorance can all impact upon their personal stereotypes. Most of these factors are beyond an individual’s control or conscientious , hence the need for Equality Training so that attitudes and approaches can be examined and reviewed in a safe and non judgemental environment.

In relation to society as a whole, I believe that one of the biggest causes of stereotypes is the media. Whether people are conscience of it or not, the media has a huge impact on how we view certain people or groups of people in our society. The words “black”, “disabled”, “muslim” (to name just a few) are regularly dropped into headlines when they bear absolutely no relevance to the actual story. By including such irrelevant descriptions serves only one purpose which is to fuel stereotypes.

However, I’ve recently been forced to re examine my own negative stereotype of the media as a negative influence. I have to admit that one of my favourite past times is watching the British Soaps and over the years, they have dealt with many issues of diversity. They haven’t always done so sensitively but nonetheless, they have opened up subjects which were previously taboo and at least, got people talking about and debating the issues. Disabled characters have always featured in the soaps but many of the storylines have been negative, doing very little to change the negative stereotypes which surround disabled people.

I am currently closely following the story of Izzy in Coronation Street. (Played by Cherylee Houston) Izzy has a long term physical disability and has recently discovered that she is expecting a baby with her partner, Gary. They are both thrilled by the news, having been reassured by a doctor that her condition will not affect the pregnancy. However, her father’s reaction to the news is one of shock, disappointment and fear. Her father, played by Ian Puleston-Davies, worries about the emotional and physical demands of pregnancy and motherhood will have on Izzy.

Having spoken to several disabled people (some of them parents), this is quite a common reaction. People see a disabled person with a child and automatically assume that it can’t be theirs or that the pregnancy wasn’t planned. The disabled parents that I’ve spoken to say that this couldn’t be further from the truth. They are very conscious of the possible implications of pregnancy and parenthood and the decision to have a child is made after careful consideration and in many cases, after seeking medical opinion. Therefore, the assumptions that people make are all the more hurtful and patronising.

There was also a recent documentary on BBC called “We won’t drop the baby”. It focused on a couple, both with cerebral palsy, who already had a young son and were expecting their second baby. It was a brilliant documentary which showed that despite obvious difficulties, it is possible for disabled people to be good parents. The documentary featured the couple’s parents who naturally expressed some anxiety and concern. But despite this, they stood in the background and like with everything else their children had achieved, they let them learn how to do things their way and it was obvious that the children were well looked after.

I think such programmes, whether real or fictional, do a lot to challenge stereotypes. So is the media a help or a hindrance in challenging the negative stereotypes that still exist in society? I think the jury is still out on that debate but I like to think that the media is doing a lot more to break down prejudices and make people question their assumptions. Like I said, as human beings, I don’t think we are always conscience of or to blame for our own stereotypes. But we are responsible for realising that we have them and for challenging them regularly.

I obviously don’t know how Izzy’s storyline will pan out but I congratulate Cherylee and Ian on their performances and hope that the storyline will continue to make people question the stereotypes surrounding disabled people.