What’s your story? Getting the message straight on disability!


Our ASD son!

Our ASD son!

The purpose of this blog and this post, in particular, is to help raise awareness of disabilities and invisible illness within the wider community.

So the idea is for us all to share our stories about our relationships with the various disabilities which have so much impact upon our lives.

So let’s start with me.

My background, as some of you may know, is healthcare market research. Which is one of the reasons I support so many students who wish to run surveys as part of their research.

But it was only six years ago that it became very real to me. Because it was them that my son was diagnosed with Autism Spectrum Disorder. You can read the story of the ASD here. You can read other people’s stories here as well.

As many of you know autism is a learning disability (among other things) which means my wife and I have our time cut out supporting him. Some becoming a caregiver was not something I planned and certainly don’t relish (all the time) but it is what I do.

From helping him get dressed through special needs swimming to working on his spellings and helping him type. Both for my wife and I. Would we have it any other way? Well given the circumstances I’d say no.

So what about you?

Please feel free to share how disability have impacted upon your life in the comments section below.

Thanks very much in advance.

PS The photo is of our son (well his silhouette anyway) at his sports day a couple of days ago.


International Day of Persons with Disabilities, 3 December 2014. What is the most important technological development which has helped the disabled community?


International Day of Persons with Disabilities

International Day of Persons with Disabilities

Tomorrow sees the United Nations’s International Day of Persons with Disabilities celebrated this year on 3rd December 2014.

This year’s theme is “Sustainable Development: The Promise of Technology”

The UN website shares “Throughout human history, technology has always impacted the way people live. The Industrial Revolution ushered in a new age of technology that raised the standards of living of people around the world and their access to goods and services. Today, technology is built in to every facet of daily living. The emergence of information and communications technologies have dramatically increased connectivity between people and their access to information, and further raised living standards.

ICTs have indeed changed the way people live, work and play. However, not all people benefit from the advances of technology and the higher standards of living. This is mainly because not all people have access to new technologies and not all people can afford them.


Today, there are over 1 billion people living in the world with some form of disability. Around the world, persons with disabilities not only face physical barriers but also social, economic and attitudinal barriers. Furthermore, disability is associated with twenty per cent of global poverty, of which the majority live in developing countries. In spite of being the world’s largest minority group, persons with disabilities and the issue of disability has remained largely invisible in the mainstream development frameworks and its processes.”

As regular readers know this blog is very interested in healthcare and technology. You can see a recent example here.

So we would like to know what is the most important development in healthcare technology in the last few years? It would be great if you could share your answers in the comments section below?

Many thanks in advance!

Noel in Focus – Surviving and thriving with Muscular Atrophy

Noel Ratapu

Noel Ratapu

Attitudelive have asked us to share some information about one of their latest videos. This time it looks at Noel Ratapu who is a teenager living with Muscular Atrophy who uses photography to express herself and accept life with a disability.

“It’s part of me but I don’t like being known as the girl in the wheelchair… I don’t mind being seen as different from the others – different is unique and if we were all the same that would just be boring.”

Noel Ratapu was born with a condition that means she is gradually losing muscle strength and mobility. By the age of 11 she needed to use a wheelchair… as her body weakened, her anxieties grew. Now 15, Noel has found her voice and identity in the lens of the camera as she accepts life with a disability and documents her journey through photography.

“A lot of my photos have sides of me. If I’m depressed I make it black and white with different lighting and layers in the background. If I’m happy then more colourful and brightness to my face.”

You can see more of Noel’s work here. An online exhibition of her work opens on 15th August 2014. – See the video at at Attitudelives’s website.

International Day of Persons with Disabilities – please like and share to show your support for everybody with a disability


Today is International Day of Persons with Disabilities.

This year’s theme is “Break Barriers, Open Doors: for an inclusive society and development for all”

We have produce the graphic below and it would be wonderful if you could share it with as many people as possible

International Day of Persons with Disabilities

International Day of Persons with Disabilities


Out of Step – an online marketplace where people with disabilities can find a path to economic success .A guest post from Nikki Zimmerman.

Nikki ZimmermanWelcome to a guest post from Nikki  Zimmerman of Out of Step.   Out of Step is a revolutionary way of assisting people with various disabilities to sell their skills and enter the workplace. PatientTalk.Org  are proud to suuport what we believe to be a fantastic initiative for the disabled community.

Nikki is the founder of Out of Step (http://www.outofstep.com/), an innovative online marketplace where people with disabilities can find a better path to economic success by selling products or services. As the mother of a daughter with a disability, Nikki saw the need for a modern tool to employ each individual’s talents and strengths rather than focus on the disability. Nikki is the author of “A Life with Riley” and lives in the Northwest USA

“I feel like the Out of Step tool has had this tremendous positive effect on my life, and on me. I feel motivated, I am happier, I feel more confident and worry a lot less.” – Christy Lloyd, Portrait Artist and a Member of Out of Step.

As the founder of Out of Step, a new, free website where people with disabilities can offer services or sell products, I get inspiring emails like this almost daily. When I dreamt of a marketplace for those with disabilities, I knew it would be an amazing place for people to showcase their skills and earn money. But it’s proved way more valuable – we’re motivating individuals to move forward and believe in possibilities again…or in some cases for the first time.

Our team launched the Out of Step tool because we believe people with disabilities can and do want to work. We’re proudly “out of step” with the notion that people with disabilities have to continue within a nearly 70 percent unemployment rate. On our website, members with a disability show their industriousness every time they create a profile to sell a product or service.

Through the Out of Step tool, consumers can now find all sorts of great things, from books to industrial tools and dating services to computer help…all by people who happen to have a disability.

We have a seller in Tennessee providing rental dirt track karts to the general public. The karts can be used on a half mile contoured dirt track. There is nothing like it in the US. 15 minutes of absolute fun. Oh yeah – and he is blind.

Another member created a company called Wheel New York, which is creating a mobile accessibility app. As a person in a wheelchair, he knows firsthand the challenges of getting around the city.

The inspiration for Out of Step came from my daughter Riley, who was disabled but still wanted to have purpose. Her passion was folding laundry, and our family dreamed of helping her open Riley’s Laundry Service. While her illness didn’t allow that to come to fruition, my goal is to provide a solution for others with a disability.

Before launching, we reached out coast-to-coast to connect with the disability community – both those with disabilities and the agencies that serve them. We heard two important themes about the search for economic opportunity:

  1. People with disabilities want real solutions that are truly designed for their participation. No more platitudes and feel good programs.
  2. Many of the agencies that work with people with disabilities are lacking the tools necessary to provide those real solutions. Rather than take someone on unrealistic job interviews, they want modern, innovative options. And in a difficult, transitioning economy, their work has become so much more challenging.

 

The Out of Step tool was created with one thing in mind: to help people with disabilities find better economic success. We believe in each and every person with a disability – and that showcasing their skills and talents will change the way people with disabilities are seen by all.

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