Who will join me on my Mission to Mars?

Katie Vecina, Sense Activist

Once upon a time, my sole ambition was to become an astronaut. Fuelled by an overdose of scifi books and films beamed at me by my older brother, I engineered my spaceship out of discarded kitchen worktop and spare car parts; it even had its own hydroponics system. For most of the summer holiday, I travelled in it, across the universe, in a space oddity that only a nerdy six year old with an overactive imagination could dream up.

When my brother gleefully tried to shatter my dreams by informing me that I could never be an astronaut, I zapped him with my super-powered laser, which consisted of a washing up liquid bottle filled with cold water.  My obsession with becoming an astronaut was short lived, which is just as well: my brother was right, my impairments did mean I could never become one. Or, so I thought, until I came across this article in the Guardian about the likely psychological impacts of the Mars One mission, concluded that my life is remarkably like that of an astronaut and that, therefore, deafblind people would make perfect astronauts.

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There is nothing like disappearing into a book….or a Kindle!

Molly Watt
Molly with her Kindle and guide dog UnisI have always simply wanted to be a part of society and when I began losing my sight at twelve, having been such a visual person, like deaf people are, I found the isolation of not being able to follow simple text devastating.

I am very glad I have grown up in an age of growing technology and that I have been able to benefit from it. Probably the only good thing about being diagnosed with Usher syndrome while at school was that I was young enough and willing enough to learn how to use the technology made available to me.

Looking back, the first technology that worked for me were analogue hearing aids at 18 months followed by a radio aid with lots of wires when I went to nursery at age three. The hearing aids changed to digital when I was eight, and after a little getting used to I could hear the difference. I remember leaving audiology with my mum and hearing two sounds that made me jump, one was the sound of my zip as I did my anorak up and the second the rustle of my hair across my anorak. I’d never heard either before. It was after this I heard bird song for the first time – I feel lucky to have this as I know my profoundly deaf friends will never hear these things.

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The excitement of taking rubbish out to the bin….

One thing I am particularly pleased to see in the Care Bill is that local authorities will have to promote wellbeing in relation to a number of factors, including suitability of living accommodation. Having lived for several years in a flat that was inaccessible, I know what a difference suitable housing can make to wellbeing.

My old flat was almost perfect for me when I first moved there but, within a couple of years of moving in, I became a wheelchair user, making the flat totally unsuitable.

It was on the first floor. To get in or out, I had to drag myself up and down outdoor stairs on my bottom, in full view of several neighbours. Bye bye dignity.

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Victory, at what cost?

Pyrrhus, Sense Activist

Having ranted over the award of Employment Support Allowance (ESA) only being awarded for six months to ‘M’ on the  Sense oldblog, for whom I am a benefits appointee, let me tell you the following tales of welfare reform concerning council tax benefit and housing benefit.

M’s local authority, which had previously not charged council tax, decided that with few exceptions, most people would pay a proportion.  There was an “exemption from” category which M would be eligible for, but required a claim to be made…

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Why should I have to use my DLA to pay for my care and support?

Steve

I am Steve, am 49 and have been totally blind and 80% deaf since 1980.

For the last ten years I’ve been a wheelchair user, having Alstrom syndrome which affects my heart, kidneys, liver and lungs. I also have problems with my back and neck as well as a form of osteoarthritis and nerve pain.

I need a lot of support with communication, having a social life and getting out of my flat.

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Radio for deaf people?

by Liz Ball

Liz BallRadio’s inaccessibility to deaf people is perhaps one of those facts of life most of us simply accept. But could that be about to change?

I had good hearing until my mid twenties. I used to enjoy listening to the radio, especially dramas, documentaries and current affairs programmes. Since becoming deaf, radio has been inaccessible to me and, although it has never been a big issue for me, I have sometimes missed it.

So I was very interested to read about a project in the United States to make radio accessible for deaf and deafblind people through live text captions. And I was pleased to have the opportunity to put some questions about it to one of the project team on BBC Radio 4’s In Touch programme.

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A punishment for claiming benefits?

Pyrrhus

I am the appointee for a young Deaf man, who I will refer to as ‘M’, who has autism and additional needs. In January I received his form to complete to claim Employment and Support Allowance (ESA).

Days and hours were spent filling it in, reading advice etc and obtaining supporting evidence to ensure a full picture was given of his needs and why he previously received Incapacity Benefit. Finally the day came when it was complete and I sent it by special delivery .

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Proper educational support for deafblind children

Molly Kearney

When I started at Sense less than a year ago I had very little idea how difficult families find it to get proper educational support for their disabled children. I quickly learned that it is a constant struggle for parents and carers, and for the deafblind children and young people who need this support to get on.

While many stories have been heartbreaking to hear, it’s also been incredibly inspiring to meet families who have fought so hard and won so much for their children.

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Social Care: a cost or a saving?

Katie Vecina

Bureaucracy is the punishment for having the gumption to ask for support. Whether we need support from Access to Work, social security benefits, housing or social care, we must lay ourselves bare, on forests-worth of forms and in face-to-face assessments, revealing to a stranger everything about ourselves in the most intimate detail: our deepest, darkest secrets; our medical history; our finances; our relationships; and so on and so forth. We must justify, many times over, why we need the support we are asking for. It is a physically and mentally painful, exhausting, and demeaning process.

Why do we do it? Are disabled people all masochists, hell-bent on inflicting ever greater humiliation and distress upon ourselves? No. We do it, only, when going without the support is even more dehumanising.

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