Determination has helped me to get to where I am today, not only my own determination but that of my family. My parents certainly needed determination from the time I was born right up to when I became an adult (and beyond!) I always remember both my Grandad and my brother also instilling determination into me. My Grandad would routinely tell me that there was no such word as ‘can’t’ and if I asked my brother to help me do something which he knew full well I was able to do, he would make me do it myself. At the time I thought he was being mean, not wanting to help me, but in fact it was the opposite – tough love.

I need determination in most, if not all, aspects of my life. From the big things – when I was struggling with working full time but yet continuing until a more suitable job came up. To the small things, such as writing this blog – I wrote what I thought was going to be a post last week but I found the subject which I was trying to write about was too bland. When I kept re-reading it I wasn’t happy so I scrapped it and started again!

Since living on my own I have needed to be determined in order to do things which I struggle with. A very small example is opening tins. I always found it difficult to open a tin using the ring pull so I used a electric tin opener. I found that for some reason although it worked perfectly on certain tins it did not work on all tins. Wanting to get the contents out, so I could get my dinner before bed time! I tried opening it using the ring pull and to my amazement it worked. I can therefore now use the ring pull but as a back up I have my electric tin opener.

Even when I am doing fun activities I need determination. I remember when I was a Brownie and then a Guide we often went up to the an activity centre. Not wanting to miss out on the fun, I discovered I was able to abseil and I could even go pot holing. It was far from easy but I probably got more satisfaction from coming out alive than any other Brownie/Guide did. Getting my bronze Duke of Edinburgh award also required a huge amount of determination, even to this day I remember thinking to myself, after my practice expedition, ‘why oh why did you even think of doing this.’ Despite my expedition being tailored to me (we probably only covered half of the normal distance in two days, which most people needed to cover in one day) it still remains one of the most challenging things which I have done. Needless to say I most definitely did not attempt to do my silver award.

Like most things in life, there is always a thin balance and in the case of determination, it is about having enough in order to achieve success but not having too much, meaning that you push yourself too far.

Three days a week I am employed by West Hertfordshire Hospitals NHS Trust (WHHT) as their Disability Champion. In this post I explain what the job involves and some of the achievements I have made, during my first year. The foundation of my job is based on both the Disability Confident Scheme and the Workforce Disability Equality Standards.

In November 2016, The Disability Confident Scheme replaced the two tick symbol and is made up of three levels

Level 1 – Disability Confident Committed

Level 2 – Disability Confident Employer

Level 3 – Disability Confident Leader

On starting my role, WHHT was on Level 1 but I helped to the Trust to get to Level 2. Level 2 focuses on ensuring that the recruitment process is inclusive and ensuring that we support our existing members of staff who have a disability.

Whilst, the Disability Confident Scheme applies to all employers, the Workforce Disability Equality Standards are only applicable to the NHS. This a new scheme which was launched by NHS England in February 2019. There are 10 metrics which NHS organisations need to publish information on, showing the differences between disabled and non-disabled members of staff. NHS organisations then need to publish an action plan, showing what they hope to achieve in the next 12 months to improve the experiences of disabled staff.

One of the things which I have set up which will help not only with our performance against both the Disability Confident Scheme and the Metrics but will also help staff morale is a Disability Staff Network. At the time of writing we have not met as a group yet (our first meeting is tomorrow!) but I have already been encouraged with the number of people who have registered an interest in joining the network.

As well as helping to improve lives of disabled members of staff, I am also committed to helping the lives of disabled patients and have delivered disability awareness sessions to various meetings. The meetings which I have spoken to include, Student Nurses, Junior Doctors, Matrons and Consultants.

Another area of my job involves reviewing and commenting on policies and I am proud to say that changes which I suggested to two HR policies have been accepted and are now written into policy.

Since becoming the Disability Champion at work I have also been asked to become the Disability Champion at my church – another role which I am very pleased to have. My first achievement within my church role has been to make communion easier for people who, like me, find holding the small glasses too fiddly.

I remember watching an comedian with Cerebral Palsy (Rosie Jones, available to watch on You Tube) saying that one of the worse things about having Cerebral Palsy (CP) is how long it takes her to say the words Cerebral Palsy – 5 whole syllables! When you think of it, it is quite ironic. As I said in my last post, not all people with CP do have a speech impediment and if they do the extent of it varies considerably. Most years, I go on a holiday with Disabled Christian Fellowship and there are three of us who have different degrees of speech impediment, I am sure when the three of us are talking together it probably does sound like we are talking in a different language! It was quite funny this year as one of the ladies was trying to explain to her carer that she wanted to go to the toilet, and would be down for dinner shortly. The carer could not understand so my other friend tried to interpret what she was saying, yet again the carer really did not know what was being said. I was the final person trying to interpret and as I was beginning to laugh, I ended up walking over and pointing to the toilet. We got there in the end!

Some other funny stories from my experience are:

• Asking someone whether they had a cold and they thought I was asking whether they had a goat!
• Asking in a shop whether I was able to pay at the pharmacy till and they thought I was asking whether I could put it in my ear (I was buying a tube of Savlon at the time)
• Telling someone that I went to Tesco and they thought I’d been to a disco!

In order to overcome the problems which my speech causes I quite often think of different ways to say things. When I was going on a cruise (a 40^th birthday present) very few people understood what I was saying so I ended up saying I was going on a boat and then explaining that it was a cruise!

By employing strategies (thinking of how to rephrase certain words) my speech difficulty doesn’t stop me from getting my message across. As you can see from my website – www.beawarebeclear.org I give talks in order to raise greater disability awareness. It is probably fair to say that when I do start talking people are a little unsure whether they will be able to understand but once they have got used to my speech then the communication problem does not seem so prevalent. I often use PowerPoint when giving talks so people know what I am going to talk about next. When I do talks to primary schools or youth organisations such as scouts, I keep my talks quite short and to the point! I also find when I give talks, because I know exactly what I am going to say and am well rehearsed, my speech therefore is clearer compared to when I am having a general conversation. How clear my speech is also depends on whether I am tired so the little bit of adrenaline which I get, when giving talks also helps!

C – Cerebral Palsy

Cerebral Palsy is known as one of the most varied medical conditions which probably explains why it took doctors 9 months to give my parents a diagnosis. The disability charity, Scope, defines Cerebral Palsy as being a “description of a physical impairment that affects movement, the movement problems vary from barely noticeable to extremely severe. No two people with Cerebral Palsy (CP) are the same it is as individual as people themselves.”

If we break the term up then Cerebral refers to the Brain and Palsy refers to Movement. Therefore although Cerebral Palsy is as individual as people themselves the one common characteristic is a problem with movement. This can include a difficulty with producing movement, a difficulty with preventing movement or a difficulty in controlling movement. In terms of the ability to walk this varies hugely from being a full time wheel chair user to being able to walk unaided, even if ‘we’ are a little unsteady and tire easily when walking.

In a nutshell Cerebral Palsy means that there has been some brain damage which could have been sustained Before Birth, During Birth or After Birth,
Before Birth – The baby’s brain could be damaged while in the womb, if the mother has to undergo radiotherapy, during pregnancy. Damage could also be caused by what the mother eats, for example, raw meats or if the mother chooses to drink alcohol while being pregnant
During Birth – The primary cause is where there has been a lack of oxygen at birth (This is how my CP was caused, the umbilical cord becoming wrapped around my neck)
After Birth – If the brain is damaged within the first five years of life, for example, if the child suffers from an infection or sustains a serious head injury.

Depending on the extent of the brain damage there can be other symptoms of CP for example, problems with speech. If a persons speech has been affected, then the extent also varies considerably. I have met people who have no speech at all and therefore have to use a Communication Board. Other people may have a voice synthesiser, as a back up. Other people, like me, find that they can be understood 85% of the time and for the times where people do not understand me I have strategies. My main strategy is trying to re phrase what I am trying to say or if worse comes to worse then there is always pen and paper. My next blog will focus on communication and will include some funny stories!

The post is something which I wrote when I was planning to talk to Midwives as part of my job at West Herts Hospital – something which I still hope to do when the opportunity arises.

Before I came into the world, my Mum gave birth to a lovely baby boy who has grown up to be a lovely big brother to me. Mum then became pregnant with me enjoying a ‘normal’ pregnancy (I probably kicked her more than she would have liked to be kicked but what baby doesn’t.) Mum always jokes that I was in a rush to come out and she was still walking up to the delivery suite when I was almost ‘popping out’ again, I am sure this is also quite common. What is less common is that I got into difficulty and decided to turn around at just the wrong moment which caused the umbilical cord to get wrapped around my neck and when I was delivered I was blue and was therefore taken to the Special Care Baby Unit. Before going further, I just want to make it absolutely clear that my Mum and Dad wouldn’t change me for the world and they love me as I am but I still get upset when I think of what my Mum and Dad went through. I can only imagine what was running through Mum and Dad’s mind will our daughter even survive, will she be able to live a meaningful life, what does this mean for our other child, all we wanted was a baby girl without anything going wrong. Mum did not keep a diary of the events but the one thing Mum and Dad can confirm is that I was in Special Care for 1 week. Mum also has a recollection of my Dad thinking that the oxygen source I was connected to was not full enough.

What then followed was eight months of knowing something was wrong with their new baby but yet no knowing exactly what it was. It was nine months before I was diagnosed as having Cerebral Palsy.

Once a diagnosis was given, my parents could arm themselves with knowledge and access appropriate support. A major source of help was that I could go to what was then called the ‘Spastic Centre’ in Watford which gave me 4 years of intensive physiotherapy and speech therapy. After my birth, Mum and Dad was told that I would probably never walk, fortunately, they made the difficult and upsetting decision of allowing doctors to operate on my hips and I took my first steps aged 3.

Fast forward 40 years I have a degree in Social Sciences specialising in Sociology and Social Policy. I have been employed by West Hertfordshire Hospital for over 15 years and have been recently given the job of Disability Champion. The other achievement which I am really proud about is that I live on my own which was an enormous step for me to make, not knowing whether I would be able to cope but with practical help from my parents I am able to cope and I love it.

Why do I now feel passionate about sharing this with midwives/paediatricians.. I want them to bear my story in mind next time they are involved in a difficult birth or have a consultation with a disabled child and their family. Obviously they would still need to remember that the outcome may not be as positive as mine. the baby may have more brain damage, and may not be from such a supportive family BUT then again the baby may grow up to have a good and fulfilling life, just like me. Whatever the circumstances I would advice that that medical professionals are positive and encourage the family never to give up on what they feel is right for their child. Mum and Dad disagreed with the local schools and fought to get me into mainstream school from aged 5 and this was the key to the rest of my life. Yes, there may be challenges but all the determination which they will need is well worth it.

As you read in my last post, changing attitudes was the main reason behind me setting up my Be Aware Be Clear project. I thought I would use this post to explain how I set the project up and how it has developed.

The name came from a poem which I began to write:

Disability isn't nice,
But I can still have a life.
If people were more aware 
Disability would become more clear 

In 2001, I was working part time as a paid member of staff in Dacorum Volunteer Bureau (DVB.) I shared with my colleagues how I would love to give talks to raise awareness of disability, using personal experience. After receiving plenty of encouragement I begun to sit down and plan what I would like my talk to include. With a plan developed, my colleagues offered to be guinea pigs and to listen to my 20 minute presentation.

After being impressed by what they heard they recommended me to various voluntary organisations who were affiliated to them. Shortly afterwards I saw, on Scope’s website, that they were running a scheme called ‘Give it a Go – Millennium Awards’. Under this scheme they were offering to provide funding for six months to help people to set up community projects.

In keeping with the name of the scheme I decided to ‘Give it a Go!’ The staff at the Volunteer Bureau were amazing with the support which they gave me, specifically with writing the application and setting out my anticipated costs for the project. The person who worked providing support to volunteers who have additional needs offered to be my mentor and was a great source of help during the six months. I was able to achieve great things in that time I gave 35 talks – reaching 570 people, most of whom were primary school children.

Be Aware Be Clear then needed to go on the back burner. Due to no fault of the Dacorum Volunteer Bureau, my job was made redundant and I was therefore busy trying to find another job. After a long and difficult job search I found myself in full time employment and although occasionally I did take some of my holiday entitlement to give talks, I didn’t give many.

The next way in which I developed Be Aware Be Clear was by designing a Facebook page – which is still running – https://www.facebook.com/beawarebeclear The Facebook page is designed to give followers little snippets of my life to show some of the challenges which I face in daily life, to share links to stories/campaigns which relate to disabled people and to publicise my talks.

Now I am back to working part time, I am wanting to give more talks but also to write my blog. I see my blog as another avenue of raising disability awareness which I can do sat on my sofa! After beginning to find working full time too tiring, it is nice to have a project which at do at home, at my own pace.

If you know of any organisation who would benefit from listening to my talk, then please do get in touch – heidibuckell@hotmail.com. (My talks range from 20 mins for children to 45 minutes for adults, although I can vary how long I speak for according to the specific group.)

Welcome to my 2^nd blog ‘Assumptions and Attitudes’ Although my disability presents me with physical problems, it is often people’s assumptions and attitudes which frustrate me the most. I often describe these as forming an invisible barrier between me and the other person and the only positive thing is that as people get to know me better, I can feel this barrier coming down. The most common assumption which I find people make is that I have some kind of a learning difficulty just because I have a physical disability which affects my speech. One of the assumptions, which I can laugh about now, but not at the time, was when I was studying at University. I asked if I could go and meet someone, the person knew that I was a student as I said I would go and see them after my lecture had finished. On walking into the room one of the first questions which they asked me was ‘Can You Read.’ If I wasn’t so shocked then I would have replied saying ‘No, you only use picture books when you are studying for a degree!’

Another funny experience was when I was doing some work experience at a school for people with profound disabilities (a silly idea I know, but I wanted to study Health and Social Care at college.) When I was having my lunch break, despite being dressed in my college uniform, a member of staff came up to me and signed, ‘Do you want to read a book’ – she automatically assumed that I was a child at the school! I think I replied, pointing to the college logo on my jumper, ‘No thank you I am fine and just want to enjoy my lunch break.’

I know that I am not the only one who struggles with attitudes. Scope – the charity which campaigns for Equality for Disabled people carried out some research showing that 2 in 5 disabled people feel undervalued and disconnected from society with part of this stemming from people’s attitudes.

Challenging people’s attitudes was the main reason why I began Be Aware Be Clear, hoping to educate people and to make a real difference for other people who have disabilities

Welcome to my blog! I am a person who has had Cerebral Palsy all my life yet through the hard work and determination of both me and my family I have managed to jump over the obstacles which being disabled can often present. I began working for West Hertfordshire NHS Hospitals in March 2003, the majority of my time with the Hospital has been working as a Data Administrator. In November 2018 the Trust created a new role for me; ‘Disability Champion’ – something which I am absolutely delighted about. Throughout my time as the a Data Administrator I spoke of my dream job being disability awareness and also my wish to reduce my hours, as working full time was tiring me out. The Director of HR was fully aware of this and my long, loyal commitment to the Trust. My job involves giving Disability Awareness Training to staff, at all levels of the organisation. I am the ‘go to’ person for staff, but also for patients who have a disability. I also make sure that the Trust is complying with the Equality Act 2010 in terms of all of the protected characteristics. The job is three days a week which is perfect as it gives me time to take things at my own pace but it also gives me time to work on my personal project – Be Aware Be Clear.

In order to combine my enjoyment of writing with my passion for Disability Awareness I have decided to write this blog, the title being an A-Z of disability! Each letter of the alphabet will have two posts attached to it which relate to my life as a disabled person. The blog is designed to be advisory but also humorous. For example I will write about the Disability Confident Scheme (formerly the two ticks symbol) whereas other posts will be much more light hearted, writing about some of the funny experiences I have had.

Depending on my other commitments I aim to add a post every two weeks.