Rebranding the Term ‘Carer’

I was reading a great article by Melanie Reid in today’s times newspaper.   She is an insprational columnist and worth following.  She is in a wheelchair following an accident and comes at the problems of spinal injusry from an interesting angle.  Her article on rebranding the term ‘carer’ is a case oin point.  I quote:

‘…

We need a new name for these people. A strong, proud word that will demand respect.

A rebranding. They need to be able to declare themselves minders, guardians, protectors, special forces. Not unsung heroes, because that’s sentimental, which is the last thing the job is, nor are they champions or buddies. Attendant is too close to lavatory, and personal assistant makes their caree sound like an aspiring CEO.

Care worker is diligent but dull, like sex worker, and while caregiver is popular in the States, I think I’d prefer a caretaker. In brown overalls with a spanner. How about floor manager? Concierge? Gofer? We could hijack the word caddy from golf, and start paying carers 5-10 per cent of our income.

Or get sponsorship for the profession from Apple or YouTube: create an iNeed or an iHelp; a YouMind or a YouVital.

Or how about a Selfish Pig? A few years ago Hugh Marriott wrote a magnificently mordant book called The Selfish Pig’s Guide to Caring, in which he blew apart the myth that carers are saintly, compassionate people and declared that it was perfectly normal to get guilty, angry and frustrated, and understandable to have murderous thoughts about the person you look after. Especially if you are one of the six million who do it unpaid, for a loved one, friend or neighbour, but even if you’re one of the one million-plus who toil in the adult care sector employed on the minimum wage.

I think this sets the case very clearly and I would welcome any suggestions from my blog readers on other terms to describe someone who finds themselves in this role – not through choice as a ‘devotee’ but through circumstance.

Have a great day

Young Literary Characters on the Autistic Spectrum

There is something wonderfully satisfying for young people who are autistic to find characters in books that share the same challenges that they do.   i especially like the book ‘Delightfully Different ‘ by D.S Walker which is about a girl with Aspergers  and sensory processing disorder. Ms. Walker found a delightfully different approach to portray the struggles of a young girl and those of her family arising from raising a child with special needs. Mia, the daughter, is partially based on the author’s child. While all the characters in her book exist only in the author’s imagination, Walker’s YA novel brings them so well to life that any parent, teacher, or young girl, dealing with the same issues can relate, learn and find hope.

The book ‘Screaming Quietly’ which I grabbed on Amazon is written by Evan Jacob.  Screaming Quietly features a character with autism and his older sibling who has difficulty at first to accept the challenging behaviors of his autistic brother. Tweens and teens who have a sibling with any special need will be able to relate to Evan Jacobs’ novel for kids in grades 7 to 10.

Finally i would recommend a comic book called ‘Melting down that i was lucky enough to read the other week.

Melting Down is the 61 page fictional story of a young boy, Benjamin, with Asperger’s disorder and other additional challenging behavior. Benjamin tells his readers that whenever there was a change he got upset, he also had trouble getting along with the other kids his age, and he never understood the rules of their games. Then we follow Benjamin and his mom as they visits many doctors and therapists.

Nathan Lueth did an excellent job with the illustrations. The language used is easy for all kids to understand and with the true-to-life illustrations most children, tweens, and teens will understand Benjamin’s story and be encouraged by it.Youth with the same problems as Benjamin should be able to relate to Benjamin as he struggles with school, side effects of medication, and his uncontrollable meltdowns. These comic books are also helpful for all kids so they can understand what some of their classmates are going through. Understanding often leads to compassion and hopefully to less bullying.

 

Ref:

Five Young Adults Fiction Books Featuring Characters with Autism

http://www.disabilitynow.org.uk/article/curious-incidence-autistics-fiction

 

Disability Innovations: How 3D printing will make orthotics smarter, faster and cheaper

Andiamo is a start up creating healthcare solutions for disabled children, with a mission to see no child ever having to wait more than one week to receive a medical device.

They are working to combine 3D scanning, printing and bio-mechanical models to create orthotics for children with a range of impairments from cereal palsy, spina bifida or spinal injuries, to strokes and the side effects of chemotherapy.

Naveed and Samiya Parvez are parents from London whose son, Diamo, was born with cereal palsy. They are also the founders of Andiamo.

Having been through the orthotics system with Diamo, so they know firsthand the discomfort and hassle involved in being measured and fitted for a new back ace. The process currently involves the child having to lie still for an hour to have a plaster of Paris cast made before waiting up to 28 weeks for the new orthotic to be made.

We all know how children can grow out of shoes and clothes in a matter of weeks, so it’s no surprise that by the time many children receive their orthosis months later they no longer fit. The current system is not only old fashioned but also painful, slow and expensive.

Scope Helps Disabled Couples Normalise Sex

I must say how impressed I am with the video Scope have released showing disabled couples getting frisky.

Sex is a wonderful thing for all of us and we all enjoy it in different ways.  I know how wonderful I feel when I go to the Erotic Awards event – Night of the SEnses’ and see the variety of delicious sexualities being acted out by folk with all ranges of disability.   This is why I am so proud to be running disabilitymatch which helps so many UK daters look beyond the disability and enjoy the person.

How to Enjoy Your Summer Break

Are you after a romantic break? Do you fancy a secluded cottage in the countryside or some seaside fun?

If so, there are some really great resources available for you.   There is a vast selection of accessible holidays and cruises both in the UK and overseas including hotels and cottages, caravans and villas. Whilst many are ATOL protected you should be aware that some holiday providers do not offer this degree of protection.   Indeed, we believe you should insist that any holiday trips are covered by the ATOL money-back guarantee.

holiday pic holiday-pic

We are impressed with the range of holidays offered through DisabledHolidays.com.   They have an experienced and specialised team to listen to your needs, find suitable holiday destinations and make recommendations based on your preferences. After you’ve chosen where you wish to go, they’ll do the rest: from arranging adapted transfers and airport assistance, to the hiring of any necessary equipment  such as hoists, electric beds or sending your luggage on ahead of you – in fact anything you need to ensure that your holiday is as stress free as possible. Right from the moment you call or email they work hard to find your perfect accessible holiday.

Whatever your disability or medical condition, they work with you to find a holiday that not only meets your needs but exceeds your expectations. Where possible, they also visit holiday accommodation too in order to check out the facilities and assess their suitability. That way, they know exactly what’s available both on site and in the surrounding area.

We think this is a cracking good service for disabilitymatch members and we feel very comfortable in recommending them to you.

Disability Rocks this Summer

Disability Rocks this Summer

It is time for our biggest batch of summer festivals organised by Disability Rocks.

Disability Rocks is a not for profit organisation established in early 2012 by Richard Sutton, father of a young boy with a rare chromosome disorder.

Richard wanted to develop new and innovative ways to help people living with disabilities have positive experiences of music and arts as it had  become clear that live music and arts activities and involvement can have a hugely positive impact on people’s lives. However, there were few examples of this being supported.

We are pleased to promote these wonderful events and here are the latest dates:

Disability Rocks in the North West
Date: Saturday 25th April 2015
Location: Tatton Park, Cheshire WA16 6QN

Disability Rocks in the Midlands
Date: Saturday 9th May 2015
Location: Lea Green, Matlock DE4 5GJ

Disability Rocks in the North
Date: Saturday 30th May 2015
Location: Nell Bank, Ilkley LS29 0DE

Disability Rocks in London and the South East
Date:Saturday 20th June 2015
Location: Lambourne End, Essex RM4 1NB

You can find out all the latest venue information here.

http://disabilityrocks.org/summer-2015-festival-tour

 

 

 

 

Cameron, The Tories and Disability.

This excellent article appeared in the Guardian.

When David Cameron came to power in 2010 I thought he and I had a connection; stuff in common, a sort of unspoken understanding of sorts. I wasn’t with him on privatisation or lower taxes, but both of us had a real, lived experience of disability that I thought might make us somehow birds of a vaguely similar feather. I was partially deaf and partially sighted, and he had a son, who later died, and a father with disabilities. Perhaps on some level, this shared understanding of the nuances of disability was where my red would meet his blue and merge into some sort of purple swirl of commonality. (I don’t mean Faragian purple – let’s not even bring him into this, it’s far too messy already.)

I, along with many other voters with disabilities, had expectations of Cameron. I never expected him to know what poverty feels like, what state education feels like, or what it’s like to be on a zero-hours contract, or 40 and still living at home because you can’t afford a place of your own. I never expected him to know about real issues and real people. He hails from the land of the silver spoon with plum juice running through his veins. As he himself said, “I’m not here to defend privilege, I’m here to spread it.” I never expected anything different.

But disability crosses all social strata. The roulette of genetics and chance means that anyone can have a disability, anyone can have a child with a disability. There are some things an education at Eton and big pile of money just can’t buy you.

Disability is easier with money and privilege. You take a private car everywhere, so there is no issue about having to get on the bus or the tube with a pair of wheels. You can pay for respite care, a nanny, private healthcare, someone to help clean your house and mow the lawn. You can afford to pay for private education and private physio and private everything. Life with a disability may be easier with money, but money won’t make disability go away. There are some frustrations you will never get rid of with money or medicine or privatisation. I thought Cameron would know this.

I naively expected policy from Cameron and the coalition that began with a true understanding of disability that can only come from living with it, either yourself, or through a close family member, day in, day out. Perhaps the personal should not affect the political, but our experiences surely shape our outlook in some way. I expected Cameron to have seen the nuances first-hand. To know there are good days and bad days, to know the difficulties and the achievements.

I expected him to know what it feels like to be stared at in the street for using a wheelchair or white cane, to have people give you pitying glances as you take a family stroll pushing your child with disabilities on a joyous spring day. I expected him to truly understand the additional costs incurred in raising a child with disabilities, the adaptations that have to be made across all areas of life. I expected him to lead a government that would carry on the progress we have seen since the 80s, when people like me and Cameron’s late son would frequently have been asked to leave a shop, refused entry to a restaurant, or turned down for a job with no legal recourse. “You’re a fire hazard,” they could say, “You’re putting off the other diners,” and we could do nothing except walk away with an overwhelming feeling of frustration mixed with shame.

The Tories like to tell us the economy is rising like a phoenix out of the ashes, employment is up, the deficit is down, people are getting rich on property again, at least in the south-east. They are patting themselves on the back for all this “progress” and vying for another term in office telling us there’s a “good life for all” if they win a second term. But in truth, life under the coalition has been a disappointing railroad of retrogression for people with disabilities. A great big roll back. How much further can it roll?

Under Cameron and the coalition acceptable discrimination of disabled people has been reframed from the overt exclusion from public life and employment of those pre-disability discrimination days, to discrimination by suspicion and scrutiny. In the interest of lowering the deficit and balancing the books, some of the most vulnerable in society have be framed as frauds, thieving benefits and leeching the system.

Disabled people have been vilified by this government. It has been suggested they are worthy of working for less than the minimum wage. They’ve had benefits cuts and been subjected to humiliating medical examination by incompetent private sector assessors to prove their entitlement. The Access to Work budget has been slashed at the same time as the Tories have been telling us there will be jobs for everyone. Hearing aid provision has been cut. Adult social care has been slashed. In the pipeline £12bn of welfare cuts are waiting if Cameron and co are re-elected that will hit people with disabilities the hardest.

 

Disabled Finnish Punk Group Set for Eurovision Victory

As of 2008, Finland had the highest proportion of institutionalized people in Scandinavia, according to the Nordic Network on Disability Research. An analysis of intellectual disability could be a damning stereotype: It’s frequently overused as a blanket diagnosis that causes people to overlook aspects of a disabled person’s humanity. According to Katherine Runswick-Cole and Dan Goodley for the Nordic Network on Disability Research, discussion of disabled peoples lives frequently overlooks basic human considerations, such as “living in families” or “having choice and control.”.

Punk rock has always sought to represent the underdog– to defy our concepts of what normal means. Finnish punk band Pertti Kurikan Nimipäivät is putting a bold new spin on that particular idea. All four members of PKN have learning disabilities, but they’re travelling the world and playing all over Europe and North America. Not long ago they won the honor of representing Finland in the upcoming annual Eurovision contest. And they’re set to tear down all the things viewers think they understand about the capabilities of disabled people.

“It doesn’t matter that we were mentally handicapped. We were part of a group,” Helle told Consequence of Sound. “We can everything in punk rock. They do not differentiate us at all. We have a good time with everybody.”.

“It’s punk rock– the same style that we have always been,” Sami Helle, the band’s bassist, told the Guardian. “We’re not going to change for nobody, just be our own selves.” That means composing songs cursing out pedicurists, giving a middle finger to group homes and institutions and having a ton of sloppy fun doing it.

Their music is classic punk– raw and unapologetic. It tests prejudice much like last year’s Eurovision winner, Conchita Wurst, did. She became a hero in queer communities with her potent declarations on gender fluidity and her overwhelming talent. Likewise, PKN is doing the same for disabled people all with a true punk spirit.

That’s what PKN is tearing apart. On their breakout hit “Kallioon!” they sing, “I don’t want to live in any group home, I don’t want to live in an institution, I want to live in Kallio.” Aalto sings, “I want some respect, human dignity in life.” The band has insisted in multiple interviews that they “are not that different from everybody else– just normal guys with a mental handicap,” as Helle told the Guardian. Perhaps the visibility they will get competing in Eurovision will finally prove the truth of this.

Respect them. Unfortunately, as Aalto implies, in 2015, disabled people still do not get the love and recognition they deserve. Though the band explicitly claims they’re “not political,” their whole appearance makes for a powerful political statement. According to Finnish Music Quarterly, “the lives of disabled people are more based on vagaries of politics than the average person’s.”.

The band’s rise out of group homes and institutions to the heart of the Finland punk circuit was the subject of a 2012 documentary, The Punk Syndrome. It’s “about one retard who sings punk and three retards who play punk,” as lead singer Kari Aalto describes it. “You should watch it and think about whether you should hate disabled people or love and respect them.”.

Their backstory: PKN formed in 2009 at a workshop arranged by Lyhty, a Finnish nonprofit organization that serves adults with intellectual disabilities by providing accomodation and schooling services. The average age of the band members hovers around 40 (lead guitarist and songwriter Pertti Kurikka finds inspiration in his 30 years of loving punk rock). The year they met, PKN unleashed a demo of their song “Kallioon!” which earned them a cult following and their first record deal. According to the band, the fan base they built never thought twice about their disability.