this is my story
Cazbarr who is she | What is her disability | Arthrogryposis is a very rare disability. I don’t really like talking about me, this is not my most favourite subject I have to say. I just don’t think I’m that interesting to be honest. Yes, I know, a bit contradictory seeing as this site is mostly about me lol.
So why did I create this site? I hope to show other people with a disability that life is what you make it. It really isn’t worth going around with a chip on your shoulder or being angry all the time. It gets you nowhere, fast! Yes, we all have bad days, some more than others but I do believe in trying to have a positive attitude and a smile 🙂 State of mind plays a major role in all our lives!
I was born with Arthrogryposis. I was born in Hammersmith Hospital, London, UK. H.H told my parents I would never walk and be nothing more than a vegetable in a wheelchair. (Great terminology!! No excuse but it was the 70’s).
I’m glad to say, my parents didn’t except that diagnosis.
They sought a second opinion at Great Ormond Street children’s hospital and it was here I had most of my operations (I’ve had over 30 in total) and learned to walk with calipers. I had operations to straighten my club feet, straighten my wrists and knees, lengthen and shorten tendons in my legs. The list is rather endless!I had a pretty normal childhood outside of hospital visits, operations & physiotherapy. Oh and waiting for my Professor to see me at the hospital, only to find out as he’s leaving his office you weren’t even on his list for that day. You’d think after the first two times this happened, they would make an extra effort in the future. Not to be!
I went to a school for children with disabilities up to the age of 13 when I decided I wanted to go to a mainstream school, as I found I wasn’t being challenged enough to keep my brain occupied, therefore I became bored very easy. (So, what else was a bored young girl to do?) I became somewhat argumentative and disruptive in class, just to liven up the day. (Well I am an argumentative so and so anyway) 🙂
Anyway, I plucked up the courage to ask my parents if I could try going to a mainstream school. To my surprise, they supported me in this decision. We applied to a local Catholic school, as we (my brother & I) were brought up as Catholics. Huh, a flat no from them, they didn’t even want to know what I was capable of. I’m sure that must have hurt my dad as he was and still is a devout Catholic. Personally, I’m glad they said no. Didn’t like their horrible brown uniform anyway ha ha.
We tried another local Catholic school and they were more than happy to see and talk with me. This was both extremely exciting as it was nerve wrecking. I remember going to the meeting and sitting outside the deputy heads office and watching all the other kids run up and down the stairs to their next lessons. I have to admit, I did think for a split second I had made a massive mistake even wanting to give this a go.
At the end of my first year at my new mainstream school, they held their annual awards ceremony, I was awarded the “Wakeling Endeavour Award”. I had my name put on the shield and engraved on the wall plaque with all the other winners.
Looking back on this time, I realise the impact I must have had on other disabled children. I didn’t realise at the time that I had somehow set a precedence for other disabled children who also wanted to attend mainstream schools. As a couple of years later, another disabled girl who was/is a full time wheelchair user, also attended my school and then another. I was pleased to hear that this was starting to happen in other schools too. The world was starting to change. Did I play a part in this change? I would like to think so but not for me to decide!
I took my exams and done pretty well. I was pleased with my results including my “Merit” in maths. (You older ones will know what I mean lol). I went on to work as a Receptionist, Wedding Planner, (I was even on TV helping a disabled couple with their wedding), PA to an after-sales manager, C.A.B First Contact, teacher – teaching computers for beginners.
My passion is web designing and would love to have my own business. I went to collage for a couple of years to learn how to be a professional web designer and to learn a host of new programmes. Working from home would be so beneficial for me with all my extra medical conditions I now have. Arthrogryposis, Scoliosis, IBS, Anxiety, Deafness and if that wasn’t enough to be getting on with, I now have all the problems that come along with having a heart attack, yes, I had a heart attack.
It’s amazing how one event in your life can change everything and just how many other ailments you are now told you have……Diabetes, cholesterol and of course the biggy….heart failure! At the time of writing this, I had my heart attack just over 2 years ago (16/10/16). It has been a very long, scary, frustrating and down right mind numbingly terrible road.
I am at present deciding whether to include a page here about my heart attack experience. I know how difficult it has been for me and my family. I also know how relieved I was to find other people who also had a heart attack or heart issues and finding out that what I am/was experiencing is normal. I would like to think my story may help others realise they are not alone and what they are going through is quite normal.
Today, I am a 48 year old woman with two wonderful children and a husband who supports me and has had to become my carer. We had a situation 2 years ago, where he broke his (little) leg, (his stump) that fits inside his artificial leg, this put him completely out of action, he had to use a wheelchair full-time.
It’s amazing how someone suddenly has a new appreciation for what you go through on a daily basis when they experience it for themselves. Jeff has told me how he now has a new appreciation for cushions lol. He says his bum has never been so sore ha ha, oh I know I shouldn’t laugh but it is a little funny 🙂
He talks of how his arms get tired from pushing his chair around, how difficult it is to do the simplest of tasks and just how much longer it takes to do them. Now in all fairness, he is no stranger to disability, yes of course, I know he’s married to me but he has a disability of his own. If you haven’t already worked it out, he has a prosthetic leg, hence why a broken leg has put him in a wheelchair.
My other passion aside from web designing, is disability issues. This ranges from reporting inaccessibility issues to shops and businesses on the high street to running groups and websites all about disability. Visiting my Hobbies page will give you all the info you need on these subjects.
Wedding Planner Diploma
NOCN Level 3 Diploma in IT User Skills (ITQ) (QCF)
Dreamweaver – Diploma
Flash – Intermediate
Photoshop – Intermediate
Education & Training TQUK Level 3 Award
ICS – Diploma in Wedding Planning
RACC – Richmond Adult Community College
I have self taught many other subjects including, WordPress, Elementor, Adobe Muse, PowerPoint, to name a few. The table above shows the subjects I went to college to learn.
I try to keep myself up to date on the programmes/subjects I have learned but the rate that technology keeps changing, makes this a task all by itself.
I am always open to new roles and challenges as I have spare time on my hands and looking to fill that time in a positive way!