Your stories will change the world

During my time working at Sense, I have heard many stories of the experiences of deafblind people and their families, such as these on social care and social security.

Some of these stories have been sad, some joyous, some serious, some funny.

Without exception, they have all been powerful.

Continue reading “Your stories will change the world”

Anywhere, Anytime

If, like me, you’re blind, you will know that heart-sinking moment when you realise you’ve got off the bus, tube or train at the wrong stop or been dropped off by a taxi in the wrong place.

“Oh no.  Not again.  Where am I?  How do I get to where I need to go?”

Twenty years ago, answering those questions relied entirely on good cane and brain work.

“Phew!  A face-full of holly.  I recognise that sequence of posts and overhanging bushes.  I know where I am!”

Then along came GPS technology, with its promise of location information and turn by turn directions.

One of the earliest commercially available accessible GPS systems involved lugging around a laptop and, in my experience, frequently got locations wrong by up to half a mile, or completely lost the signal.

Liz in 2001 using an early GPS and wondering will it work


Thankfully, things have improved and continue to do so.

Continue reading “Anywhere, Anytime”

I am in love with braille

This week is national braille week.  Why is braille still so important in this age of computers and why does it arouse so much passion?

I am in love with braille.  I use it every day, for most of the day.

For me, braille is my only effective way of reading.  I cannot see print.  I cannot hear audiobooks, people or synthetic speech reading to me.  Braille opens up a world of information that I could otherwise never access. Continue reading “I am in love with braille”

Legislation Alone Cannot Give me Control

The Care Act comes into force in April. Much has been made of how this should put disabled people in control of our own lives, by giving us choice over how our needs are met.

This is extremely important to me. I would object fiercely to having my life micro managed by the local authority. I want to make my own decisions, to have the support I need, when I need it, provided how I need it. That, after all, is what is meant by independent living.

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Having your say in May

Today is National Voter Registration Day.  Are you registered to vote?

There is something very satisfying about voting in an election. We are having our say on who should represent us in Parliament, who we most believe will listen to our concerns, stand up for the things that matter to us and work to make the world a better place. In closely contested elections, our vote could change who becomes our MP and who forms the government. It could change the course of events locally, nationally and even internationally.

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Inaction is not an option

The social care system is in crisis.  Many disabled and older people who need care or support are going without.

Research commissioned by the Care and Support Alliance found that half a million people who would have received care in 2009 are now unable to get it.

A new report by the Barker Commission on the future of health and social care in England puts forward recommendations on how to change this.

The report is clear.  More money is needed and society can afford it.

Continue reading “Inaction is not an option”

Meet Gulliver, my robotic communicator-guide

A recent article in the New York Times explored how robots are being used to care for and support older and disabled people and the roles they might take in the future. It introduces us, for example, to Paro, an artificial baby seal being used to provide comfort to people recovering from strokes. If responses on Twitter are anything to go by, most people find this a depressing concept. Not me!

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Rehabilitation services must innovate to survive

Rehabilitation training equips blind and deafblind people with the skills they need to live independently, such as cooking without sight, communicating in new ways, or using a long cane to get around. I have written elsewhere about the importance of this for deafblind people. The Care Act emphasises the need for this type of service that can reduce, eliminate or delay the need for long-term care and support.

Yet, the number of people receiving rehabilitation training is falling, as is the number of rehabilitation officers employed by local authorities. Local authority budgets are under severe pressure from government spending cuts and increasing demand for services.

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The fight goes on to victory

Sometimes, campaigning is exhilarating: we are doing fun and exciting things and getting quick results. For example, when I was a student, I was involved in a campaign that arranged for a wheelchair user to abseil down a building in tandem with a senior manager from a sister organisation to highlight its inaccessibility. Just six weeks later, a lift was installed. But, most of the time, campaigning is hard work, slow and a bumpy ride.

When you have been campaigning for something for years, it is easy to lose the will to live, never mind to keep repeating the same points.

It is at times like this that we need to reflect on, and draw strength from, what we have achieved, no matter how small these successes may be.

Continue reading “The fight goes on to victory”

Stop blaming blindness

Rehabilitation services enable blind, and deafblind, people to develop skills to increase independence. They include, for example, training in orientation and mobility, cooking and other household tasks, reading braille, and using specialist equipment and software. They reduce, sometimes eliminate, the need for long term support.

A recent report published by RNIB revealed a worrying drop in the number of visually impaired people receiving rehabilitation services. It also showed that, when such services are provided, they are often restricted to six weeks, which is woefully inadequate to learn the complex skills, and the confidence needed.

Continue reading “Stop blaming blindness”