Tag Archives: Disability

Your Average Jo

In the latest of our series of articles from young people talking about growing up with a disability, Jo tells us her experiences:

“I was asked to write an article for Cerebra about what it’s like for me as a young disabled person. This, as I’m sure many of you are aware is a massive topic, and not one that can be covered in one fell swoop. The experience of disability is different for everybody, regardless of whether they are disabled or not. And within every personal journey there is so many things to talk about, such as attitudes and relationships, services, obstacles, the list goes on.

So, on this basis, and considering I haven’t written an article for Cerebra before, I thought I’d simply introduce myself to you all and try to give you an insight as to what it’s like being me. Granted, I don’t think my life is all that interesting, but if you’re anything like me you love to hear other people’s stories…So here’s hoping this is up your street.

I guess the mantra for my life arose when I was little. I impulsively announced to my Physiotherapist that I was going to be a ballerina when I grew up. When I tell you that I have Quadriplegic Cerebral Palsy and I’m a fulltime wheelchair user, I’m sure you can picture the look on the Physios face as she attempted to come up with a response that would neither put me down nor get my hopes up. After a few seconds, she tactfully suggested that perhaps I could be a choreographer instead.

It’s safe to say I didn’t become a ballerina, or a choreographer for that matter. Not because I felt as though my CP prevented me, but because with or without a wheelchair I have two left feet and very little artistic flare. The point is, from an early age I was never told I categorically couldn’t do something. If I had grown to be passionate about ballet, then there would have been a way for me to have been involved. At the same time, no one in their right mind would’ve led me to believe I could’ve become the next Darcy Bussell. I’ve always known my potential as well as my limitations. I’ve embraced them and worked with them.

With this notion firmly rooted in my mind, when I reached school age the prospect of being the only kid who used wheels as opposed to legs didn’t faze me. Sure, my fellow five year olds stared at me as they were asked to push me round the playground and thus were effectively told to ‘be nice to the disabled girl’, but I knew that I had much more to offer than a chair that they could take turns to push. My mission, even at this young age was to make them see beyond the chair.

I had learnt two lessons that day; in order to make people see you and not your disability, do nothing other than be yourself. And laugh…Laugh hard at everything, including yourself.

I’d love to tell you that I had a grand plan as to exactly how I was going to accomplish this, but I really didn’t. In fact, the icebreaker was entirely accidental and somewhat physically painful. A boy in the year below me unintentionally tipped the chair, and by association, me, into a patch of nettles. As I lay there laughing at my misfortune, I caught a glimpse of the poor boy’s face and realised that whilst I had found the situation hilarious, he had burst into uncontrollable tears at the thought that he had hurt another pupil. I had learnt two lessons that day; in order to make people see you and not your disability, do nothing other than be yourself. And laugh…Laugh hard at everything, including yourself.

Are you bored of me rambling yet? Oh good…I’ll carry on then.

One of the things that perplexes me most, is the assumption that disabled people are an inspiration. A case in point for this baffling concept came from an English assignment I was given which had to be based upon my first year of secondary school. I can’t remember what I specifically wrote, but I have a recollection of the poem detailing the countless risk assessments that had to be done for my needs to be met, as well as stating that I was always late for lessons because the routes that didn’t involve stairs took longer. I gave my work in with the passing thought that it was honest and humorous and didn’t think any more about it.

However, when my teacher handed the poem back to me she said that it was beautiful and that it had made her cry. In my mind, I thought her reaction was an over exaggeration as I had only done what she had instructed me to do. I remember thinking that perhaps this was simply within her character as she seemed to be the type of emotional person who would get through a box of tissues whilst watching The Notebook.

I like to think I’m grounded and I don’t for a second feel that the world owes me any favours just because I happen to have CP. I’m your average Joe (quite literally…My name is Jo).

At the point when I received two awards in one day for this ‘inspirational’ poem, things got weird. I was informed by the Headteacher that I offered an outstanding contribution to the community. To this day I don’t understand what the hype was about. I’m not saying I wasn’t grateful for the recognition and I wholeheartedly believe that many people disabled or able are inspirations. This said, it’s not like I had just climbed to the summit of Mount Kilimanjaro. If I had, I could understand what all the fuss was about, considering I can barely walk two steps before the air seamlessly runs out of oxygen. Instead, I was given praise for just being me, which I find totally bizarre. Shouldn’t everyone be acknowledged for being themselves?

So, there you go folks. Just a small snippet of my experiences as a young disabled person and some of the things I’ve discovered along the way. I like to think I’m grounded and I don’t for a second feel that the world owes me any favours just because I happen to have CP. I’m your average Joe (quite literally…My name is Jo). I’m a young woman, living on my own and I’ve just graduated from University. I hang out with my friends and adore animals. My disability does not make me abnormal or extraordinary. Everybody has challenges in life and my life is no different. The only difference is that many of my challenges include breaking down disability related barriers and mowing down all the obstacles in my path. But that’s a story for another day. If you’ll have me back of course!”

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual.  The articles will be published as individual blogs in our newsletter and on our website. If your child would like to write something for us please contact Emma Thomas on emmat@cerebra.org.uk.

Behavioural interventions for sleep problems in people with an intellectual disability: Do they work?

This is a summary of a recently published academic paper. Sleep problems were identified as one of the least well studied problems in the lives of people with an intellectual disability. It is an issue that affects the health and well-being of those who experience them, and also that of their parents/carers.

Download research summary pdf


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Education in England: Statements of Special Educational Needs: A Guide for Parents

Statements SEN EnglandA new system for children with special educational needs (SEN) was introduced in England from September 2014. From that date statements of special educational needs (SEN) were replaced in England (but not Wales) with a new document called an Education, Health and Care plan (EHCP). This means that SEN statements are no longer issued and those children who have a SEN statement are gradually being transferred over to an EHCP. This process is not due to finish until April 2018 which means we are in a transition period where the old and new systems are running alongside each other.

Please note this guide is only relevant to those children who still have a SEN statement and live in England. If you believe that your child has SEN or is being assessed for an EHCP or already has an EHCP please see Cerebra’s Education Health and Care (EHC) Plans (Education in England: A Guide for Parents). If you live in Wales please see Cerebra’s Education in Wales: A Guide for Parents.

Download 'Statements of Special Educational Needs (Education in England: A Guide for Parents)' PDF

First published 2016. This edition 2016. Review date 2018.


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Finding and Assessing Sources of Legal Help: A Guide for Parents

Parents of disabled children might well need to seek legal advice at some stage in their lives for a whole host of reasons. The child may have been injured, may not be getting the educational support to which they are entitled, or they may even need representation at a police station. There will also likely be a need to consider making a will and other financial arrangements for their child.

Identifying and approaching a solicitor for legal help can be one of the more daunting prospects for families and carers of children with a disability. The choice of your solicitor is critically important. This guide is intended to make that approach as straightforward as possible.

Download Finding and Assessing Sources of Legal Help

First published 2013. This edition 2017. Review date 2019.


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Education in Wales: A Guide for Parents

Educationin WalesThis guide has been prepared for parents of children with special educational needs (SEN) and/or disabled children living in Wales. It only applies to Wales and we have written separate guidance for England.

Download 'Education in Wales: A Guide for Parents' PDF

 

 

First published 2016. This edition 2016. Review date 2019.


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University of Leeds Launches Disability law Hub

The University of Leeds is set to be a leader in the field of disability law with the launch of a Disability Law
Hub.

With more than one billion disabled people worldwide facing possible discrimination and exclusion, the
new hub will be dedicated to research on disability law, as well as offering a wide range of teaching
expertise at undergraduate, Masters and doctoral levels.

Specialist areas include mental health and capacity law, disability equality law, care law, international disability rights law, disabled victims of crime, and the relationship between disability and areas of law such as contracts, torts and intellectual property.

Forming one of the largest groups of disability law scholars in the world, the hub will be headed by
Professor Anna Lawson and will comprise nine legal academics and several PhD researchers.

At the launch event at the university on 15 April, Professor Anna Lawson, who is herself blind, said: “I
studied law at the University of Leeds in the 1980s because it was the only university that offered a
transcription service for blind students. Thirty years later, I am proud that my alma mater has taken a
leadership role in recognising disability law as an important area of legal research and scholarship and very
excited about working with my wonderful colleagues in this area.”

Professor Sir Alan Langlands, Vice-Chancellor of the University of Leeds, said the new hub builds on a
strong track record in disability studies at the university. He said: “For many decades the University’s
Centre for Disability Studies has challenged socially-created barriers that limit the life chances of disabled
people. The new Disability Law Hub houses the country’s leading group of legal experts in this cutting edge
field”

Two new Professors of Law and Social Justice have recently joined the School of Law and become members
of the hub. Luke Clements is an expert on social care law whose Chair is endowed by the charity Cerebra.
He is a practicing solicitor who has taken many of the landmark discrimination cases to the European Court
of Human Rights.

Oliver Lewis joins the School of Law while retaining his position as Executive Director of
an international human rights charity, the Mental Disability Advocacy Centre. He has worked in some 20
countries in Europe and Africa on strategic litigation and advocacy which advances equality, inclusion and
justice for people with mental health issues and learning disabilities.

Cord Cohn Low, Chair of the School of Law’s Advisory Board has said “When I taught law at the University
of Leeds in the 1970s and early 1980s I did not imagine that the School of Law would one day establish a
Disability Law Hub. I am delighted that its scholars have a range and depth of expertise that will be
invaluable in closing the gap between the rhetoric of human rights and the lived experiences of disabled
people around the world.”

Professor Alastair Mullis, Head of the School of Law, added: “I am immensely proud that the new
Disability Law Hub will offer undergraduate and postgraduate students an opportunity to engage with
legal theory and practice so as to improve access to justice for disabled people, who have languished on
the edges of the margins of law for tar too long.”

Cerebra is happy to share this press release which was issued by the University of Leeds.

You can find our more about the Law Hub here.

 

Anxiety Guide: A Guide for Parents

This three part guide has been developed to give up to date information on how to spot the signs of anxiety and anxiety disorders and what can be done. Part one describes the common signs of anxiety and specific anxiety disorders. Part two describes the ways professionals assess anxiety in children with intellectual disability, and Part three gives guidance on helping your child reduce feelings of anxiety and gives some examples of specific disorders associated with anxiety.

 

Download 'Cerebra Anxiety Guide: A Guide for Parents' PDF

BMA Patient information awards_highly commended

Highly Commended in Special Award-Children in the 2016 BMA Patient Information Awards,

First published 2015. This edition 2015. Review date 2018.


 

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