Tag Archives: disability

An invisible population: older people with autism

A resident of Hinnerup Kollegiet, a Danish community of older people with autism (pic: Hinnerup Kollegiet)
A resident of Hinnerup Kollegiet, a Danish community of older people with autism (pic: Hinnerup Kollegiet)

Timothy Baron was among the first children in the UK to be diagnosed with autism just over 50 years ago. Timothy was in need of specialist education but autistic children then had no right to schooling, so his father, Michael, opened his own school, the movement became the Society for Autistic Children – now the National Autistic Society (NAS).

That was the 1960s; today, Timothy, who lives in residential care, is nearing 60. The first generation of children to be diagnosed with autism is now moving into older age. Ageing with autism brings not only the particular challenges of the condition – communication, social interaction or sensory issues – but the social, physical and mental health issues often experienced in old age.

Policymakers are aware of the impact on society of the ageing population, but the same focus has not been given to people with learning disabilities and autism.

Read the rest of my piece about the need for more work on autism and growing older in the Guardian’s social care pages.

Lizzie: people should see me with no limits, no barriers, no name tags

Lizzie in the studio
Lizzie in the studio

It’s no surprise that soul singer Lizzie Emeh has called her forthcoming second album See Me: “I want people to see me and accept me as I am. I want people to see me as a disabled person with no limits, no barriers, no name tags. I want to inspire other people with disabilities, for them to say– if she can do that, so can we. People with disabilities are always told, you can’t do this, you can’t do that. I want to change all that!”

Lizzie became the first person with a learning disability to release an album in 2009, now she hopes to complete her second, breaking new ground by using crowdfunding to produce it. Lizzie’s first album, Loud and Proud, took three years to make, produced with the support of arts organisation Heart n Soul, which she is still working with.

Lizzie, who was never expected to walk or talk following complications at birth, has performed at Number 10 and at the London 2012 Paralympic Games Opening Ceremony. She is hoping for more donations ahead of her crowd funding deadline for donations on Saturday – this week has been the final push for support. You can find out more and see Lizzie talking about her work and what her second album means to her here.

Singer Lizzie Emeh

Heart n Soul’s long-running multimedia club night Beautiful Octopus takes place on Friday 13 September on London’s Southbank, with live performances, DJs and “interactive zones” where the audience can participate in the music, dance and other art-related events and activities showcased.

* To donate to Lizzie’s campaign for her second album, see this link

Tailor-made technology: systems and support in social care

Julie Heightley was so worried about her son Thomas suffering an epileptic fit at night that for two years she slept on a camp bed outside his room. The broken sleep and constant supervision of Thomas, who has autism and global developmental delay, was adversely affecting both Julie’s role as a carer and any prospect of independence for her son.

I came across Julie and Thomas’ story while researching a new report published today by the Voluntary Organisations Disability Group and the National Care Forum.

Now, thanks to a discrete network of wireless sensors dotted around the four-bedroom family home just outside Wolverhampton, Julie and Thomas, now five, are enjoying what Julie calls “a new lease of life”. Since the home was kitted out with the assistive technology two years ago, Thomas has been able to safely play and walk about the house independently without needing his mother’s 24-hours-a-day supervision. As well as having a slightly more hands-off approach to her five-year-old, Julie, a lone parent, has more time to spend her two older children who are in their teens.

Julie and Thomas with his older siblings
Julie and Thomas with his older siblings

Assistive – or personalised – technology includes a wide-range of supportive but unobtrusive services and equipment, from personal alarms for elderly people, to seizure monitors and more sophisticated fingerprint recognition systems that allow you to open the door without keys. It can also include computer software, hand held devices or video call systems that increase social interaction and family contact.

As fans of such services and systems point out, the traditional view of this technology is that it involves a medical and prescriptive approach (see the comments on the related VODG blogpost), but the key issue is to bring it to the consumer market, widen its use among the general public and raise awareness about its potential.

As the publication stresses, the social care sector has embraced a huge amount of innovation in assistive technology, using new methods to complement the physical work of support staff. it is transforming lives for the better. But the use of such services, systems and equipment does not enjoy the higher profile of our counterparts in the health sector, despite the fact it is entirely in line with the “person-centred” approach that care providers are working towards and encourages choice, control and independence – social care watchwords.

Today’s report, with its real life stories of how technology is transforming the lives of vulnerable people, aims to change that: “Put simply, technology is part of our modern landscape. We use it for work, leisure, at home and on the move. It makes our lives easier. People with life-long disabilities or age related conditions should share that experience, benefitting from the advantages that tailor-made technological support can bring.”

* Read more on the VODG website and download the report Using assistive technology to support personalisation in social care

The artists redrawing our perceptions of disability

Bengali Welcome, by David Constantine

Photographer David Constantine – he’s the creator of the arresting and uplifting image above, Bengali Welcome, above – has a theory as to why his subjects relax once they’re in front of his lens; his wheelchair breaks the ice.

Constantine’s work is being shown as part of the inaugural Bloomsbury Art Fair that opens today at the Goodenough College, Mecklenburgh Square, London. As well as works by popular artists Banksy and Damien Hirst, there are pieces for sale by new and emerging artists. The three-day charitiable event raises money for spinal injury-related charities.

Constantine, for example, began taking pictures as a teenager and sold his bike to buy his first camera. While on a working holiday in Australia in 1982 he broke his neck in a diving accident and became quadriplegic. Paralysed from the shoulders down, he gave up photography for a year. But while he wasn’t able to pick up his camera, he continued to “see” images. As he writes on his website: “During that year I realised that I was still ‘seeing’ pictures, choosing images in my head even to the point of deciding on film types and composition I would use for a particular shot. The only thing I lacked was the physical ability to use a camera. I realised that this was a ridiculous reason for giving up and all it need take was some adaptations to my camera and wheelchair to enable me to take pictures.”

Exactly a year to the day of his injury he began the process of taking pictures again. He travels with his work for Motivation, the international disability charity he co-founded, and his main subjects are people in their own environments. As he says, “the disadvantages I foresaw with my photography after becoming a wheelchair user have turned into advantages.” He has developed different skills and enhanced others: “I am so conspicuous that it has made me bolder, I am happy to go and ask someone for their picture. If I can’t communicate verbally I make it very obvious that I would like to take their picture, people make it quite clear whether they are happy for me to photograph them or not.”

Love, by Sophie Morgan

Among the participating artists is Sophie Morgan, who was runner up to Britain’s Missing Top Models. Morgan had a car accident in 2003 that left her paralysed and in a wheelchair for life. Her beautiful piece, Love, is above.

Morgan’s website declares that she is (in this order) an “Artist, Portraitist, Writer, Arts Psychoth