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BILD - All About People
Friday 18 August 2017
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Other voices

BILD's work is all about people - that is why we think it's important to hear as many different people's views and opinions as possible.

Blogs are a great place for people to share their personal experiences of the world and a fantastic way to hear about the issues that really matter to people.

Below are a selection of blogs written by people with learning disabilities, family carers and learning disability campaigners.


If you write a blog or know of any other blogs that you think could feature on this page please send your suggestions to enquiries@bild.org.uk

 

People with learning disabilities

Introducing Max blog header

Introducing Max
“My name is Max Lockwood and I am blogging for Huddersfield Down Syndrome Support Group. The words are all mine but mum helps with spelling and punctuation! ENJOY!”  

 

living with lowes

Living with Lowes
This blog is written by Paul who writes about his interests and his achievements whilst living with Lowe’s syndrome.


Sarah Gordy blog header

Sarah Gordy
A passionate and experienced actor with Down Syndrome

Diary of a Painfully Shy Introvert 
A blog written by a painfully shy introvert woman with Asperger Syndrome. She describes the constant trials and tribulations associated with not understanding social situations. 

Autism as an adult
A blog written by Susan who describes the effects of late diagnosis, the lack of services and support to help her make sense of autism after a lifetime trying to figure out the lifelong social and sensory difficulties of autism.

Family carers

A Dad's Perspective blog header

A Dad’s Perspective
Matt Davis is a Parent Patron of Ambitious About Autism. His son Isaac is six years old and was diagnosed with functioning autism just after his third birthday.

The earlier death of a patient

"One of the various devastating moments during LB’s inquest was the revelation that another patient had died in the same bath in 2006. Can you imagine?" This is an extract from the blog, 'mydaftlife', written by Sara Ryan, Connor Sparrowhawk's mum.

She writes "The bare facts: a patient in his 50s had a seizure in the bath with someone present who apparently struggled to get him out of the bath. His cause of death is recorded as 1a. convulsion with asphyxiation due to 1b. malnutrition, and 2a. contributing cause depression. There was no postmortem or inquest. The coroner is now investigating whether an inquest should be reopened into his death". 

A Different View
Pictures, words, experiences of raising a child with Down’s Syndrome.


A Life Unlimited
“Living with severe Autism”

Downs Side up

Downs Side Up 
“Gently Change Perceptions of Down's Syndrome from Within Hearts: Inspire, Love, Change, Campaign, Educate, Lead, Support” written by Hayley Goleniowska


Down’s with the kids
 
A father’s blog. Life with Stanley Matthew Palmer ~ and other family members. "Let's go crash that party down in Normal Town tonight."


Life through the wrong end of the telescope 
“Looking at life differently thanks to a wobbly Superhero, an imaginary Ginger cat and a rather awesome set of flashing whizzy wheels. Doing our best to make life awesome - capes, bacon sandwiches and many a glass of wine included!” (Joubert Syndrome)


Looking for blue sky blog header

Looking for Blue Sky
“I never meant to write about my children, but my son was only diagnosed with asperger's syndrome a few months before I started writing this blog.  Almost inevitably, I have ended up writing a chronicle of our journey.”


Love, Belief and Balls
"The title of this blog, “Love, Belief and Balls”, was originally the working title of a book I was writing about my experience as a male counsellor working with male clients.The book is still to see the light of day but I decided to use the title for this collection of random thoughts. I am 52 years old. I am the father of a 23 year old man with autism. I work as a counsellor and advocate." written by Mark Neary


Michelle Daley's Blog
Michelle has an adopted daughter with complex disabilities and writes about warrior mums


My Son’s not Rainman
“John is a comedian and single dad. His son is eleven years old and autistic... he isn't a genius. His only special power is making his dad laugh. A lot. This is their true story of Lego, magic trains, the number 75 bus and life in a chaotic world neither of them will ever truly understand.”


Noah’s Dad
“Giving the world a window into the life of a family raising a child with Down’s Syndrome, telling the story of our son’s life via one minute daily videos. My hope is that as people watch our son grow up, they’ll see there our story isn’t nearly as scary (or sad) as many people believe.”
 

Orange Juice Flavour Sky
“Lessons I'm learning from Emily and others with Down's syndrome”
 

Orange This Way
Orange is a SWAN. This means he has a Syndrome Without A Name and is currently one of thousands of children in the UK who have complex disabilities but who have no diagnosis for their condition. This mother's blog is all about bringing up Orange.


Orli, Just Breathe
“Blog incessantly and honestly about SEN, Ocular Albinism, Vision Impairment, Gifted kids, my kids, parenting and anything else that crosses my mind.”

Pinkoddy blog header

Pinkoddy
“Life surrounded by blues. I am Pinkoddy. Happily married with 4 boys aged 4-16 years. The oldest and youngest have special needs. I blog about varying aspects of my life.”


Premmeditations
“Reflections on Premmie Parenting.”


Steph’s Two Girls
“Started as a diary after a diagnosis of autism for our younger daughter. Now includes snippets of everyday life with my two gorgeous girls.”


The Future’s Rosie
A father’s blog celebrating the progress of his beautiful daughter, Rosie who has Down’s Syndrome.

The Name of the Rose
"This is a blog about my daughter; The Rose and me. The Rose has Aspergers Syndrome, she’s autistic. She’s 17, funny and beautiful. It’s tough living with autism of course but this story is about the joy and the privilege I have to see life viewed through a different lens. There is humour and warmth in every situation."


Was this in the plan?
“I started writing "Was this in the Plan" in 2008. Since then I have written over 150 posts all about my life, our journey with Costello Syndrome, TPN, Epilepsy and Autism.”

 
The Sensory Seeker

Through this blog I will share with you my journey of understanding my little Sensory Seeker, and how he grows and develops, as well as how I grow and develop as a Sensory Seeker of knowledge."


Learning disability rights blogs

Making rights make sense blog header

Making rights make sense
“Musings on closing the gap between theoretical rights and lived reality” written by Neil Crowther

Is a ‘Spectrum’ the Best Way to Talk About Autism?

"Charting where an individual falls on the autism spectrum is nearly impossible. After talking to doctors, epidemiologists, self-advocates, and anthropologists, I learned that the more you try to pin down what the autism spectrum actually looks like, the looser your grasp on it will become", Rose Evelet writes in a blog. 


Special Needs Jungle
News, resources, information & informed opinion about SEN, Disability & Health issues from 0-25yrs.


The Small Places
“Can you imagine our capacity and mental health laws working in a better way? Inspired by the Convention on the Rights of Persons with Disabilities, take the re-imagining legal capacity challenge!”


Disability Sheffield
"Promoting choice, control and independence for disabled people in Sheffield"

The Disappeared

Chris Hatton of the University of Lancaster writes about "the apparent disappearance of people with learning disabilities from the official gaze of statistics and services designed to support people with learning disabilities", in his latest blog. 

Watch Chris' speech a BILD Annual Conference 2015 

Impatient inpatient - a blog by Chris Hatton

Chris Hatton of The University of Lancaster reveals the latest monthly statistics on the number of people with learning disability and/or autism in specialist inpatient units have been released by the Health and Social Care Information Centre >

"Despite the LGA/ADASS/NHS England strategy making much of its invitation to pool budgets across health and social care, a 'transformation fund' and a promise of dowries for those living in inpatient services for 5 years or more, it’s doubtful to me whether under the cosh local authorities are going to play", he writes. 


Out for the Count – learning disability data, a blog by Chris Hatton

"At the start of the Winterbourne View/Transforming Care programme to get (some) people with learning disabilities out of specialist inpatient services, it became very clear that information about the number of people in inpatient services, and what was happening to them, was pretty much absent.

The Learning Disability Census (which was done in 2013, 2014 and 2015) is not planned to be repeated in 2016. The Census is the only place that gives us any regular, large-scale information on what happens to people in inpatient services – restraint, seclusion, assaults, and antipsychotic medication usage.

Losing this information would give us no way of scrutinising what inpatient services are doing to people, which to me is an essential part of evaluating the impact of the Transforming Care programme", said Chris Hatton.  

"If we can change perceptions then we wouldn't be so fearful"

Sarah Roberts, mum of three, including Oscar, who's now three and a half and has Down's Syndrome, is urging people to sign a petition against aborting babies with Down's Syndrome later in pregnancy.


"People with learning disabilities are still not recognised as fully human"

"My son, Connor Sparrowhawk’s death in a Winterbourne View-type unit was preventable. We don’t need a commissioner to enforce pledges on better treatment. Just treat everyone as a human being.

Stephen Bubb's report on the Winterbourne View scandal is his third in the last 18 months Winterbourne View – Time for change, Time is Running Out and The Challenge Ahead. He states at one point; “I am acutely aware we do not just want more reports”. No. We don’t need any more reports. But he isn’t the problem. It’s the continuing lack of recognition of learning disabled people as fully human.




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