Sunday, 24 October 2010

Martin's Story

I have ROP retinopathy of prematurity, which has left me totally blind.


This was caused by hospital negligence, and on top of that fact, I am now feeling the state are penalising me for being what they made me, blind. I feel hated, disregarded and in constant fear of what the state will do to my disability related benefits. I do not want to be blind, I was not born as such, the state, by their inadequacy in my care when I was born prematurely made me as such, and now, I feel they are punishing me for being disabled.


I am frightened for what the future holds for me as a person in the UK who is blind. My communication depends on a rather expensive box that can get viruses and is expensive to maintain, and my problems don’t end at the door to my house, far from it. For instance, I cannot get my money from a cash point without assistance, as the machine does not talk. I am not sure what stop I am getting off at when I’m on the bus without asking strangers. I can't shop independently because I can't see the goods. This is only a
snapshot, all this stuff takes time and costs money, and I have one disability, not multiple disabilities.


For instance, lose your sight and you have access to only 4% of all written material published in a year,
which others have deemed it fit to put into other formats than print. lose your sight and you lose your privacy, as the technology to access letters independently is so expensive, you either have to ask a friend to read your
post, security risk that, or get into debt or ask for charity hand outs to pay for equipment to enable private reading of bills, statements etc.. In an increasingly visual world, blind people are cut off from society, from
media and from comment without the aid of expensive equipment. I write for leisure, and the software I use for this is expensive, and I’m not talking of office software either, I’m talking about the screen reader. DLA
compensates, a very little, for the costs of being disabled.


Mobility allowances allow blind people to get about in taxis where buses don't go, they pay for people to help blind people shop for clothes, and assist in leisure activities. DLA is critical to blind people to accommodate their access needs.


After ten years of living on my own with little benefits support, I recently applied for middle rate DLA, and that was a hard won benefit, as I’d not claimed it as soon as I moved in to my own house. As soon as I realised I was entitled, I tried to claim. They asked why I hadn’t claimed before, and I said, it was because I didn’t know the benefit was there to claim. Appeals continued, and nearly went to tribune. I will post here without shame, and without prejudice, the exact evidence I submitted to the DWP to illustrate what problems a blind person has to face when going outside their door.


This is an illustration of problems encountered by a person who is blind, so might not be my typical day *smile*


Day one. , received a bunch of letters. I need help in reading those, and would use technology, but if I don’t have this, or the letter is unreadable by the technology, I need help from a sighted assistant. I find after reading that one letter is from the local council about urgent matters, necessitating me filling in a form. I use technology to do this if there is an electronic copy, or the form is well printed so it can be scanned into
the computer and filled in electronically where possible before being printed off and signed outside of the home, as I could not sign the form myself without help. Another letter was from Anglian water, and this
prompted me to think about help I could get with my bills, which necessitated another form to be filled in. This meant either a printed form, or online completion. If I did not have my technology to enable me to
complete a form, I need sighted help to complete this form.


The form was about three pages long, needing specific information about benefits and other things proof of which I needed to gather from other places. I need to use computer records, or write letters on my computer to bodies who send me printed material, which needs either scanning if good quality, or if poor quality I would need to ask a sighted helper to find appropriate information and deal with the issues arising. The proof of entitlement for benefit was in printed format, which I found by going through paperwork by using computer technology. This takes a long time, and inaccuracies are common with scanning software. This can often result in poor rendition of the printed copy, which can lead to misunderstanding on my part, and serious consequences. For instance, reading of statements, the OCR software misreads numbers, necessitating clarification by a sighted person... If I did not have this technology, I would have to use sighted help to find the entitlement notice. I need help in signing the forms and reading them over to make sure they are accurate and complete. I would have to use sighted help for this if I had no technology. I would then have to post those letters, and would need sighted help to address the letters if I had no pre stamped envelopes and pre made address labels. There is a danger of mixing pre paid envelopes, and this is unacceptable.


My organisational skills need to be very acute for the day to day independent running of my life. Also, I feel that relying on sighted help opens a blind person up to possible ID and financial fraud. Scanners and other reading technologies not only increase a blind person’s independence, but also protect them from ID fraud by increasing that independence and allowing for privacy.


Day 2.


I go to the cash point to get money from my account. On the way I find bins and cars on the pathways of my local area. These bins are often left out from the night before bin day, and throughout the collection date itself,
and sometimes beyond those dates. I told the local council of my concerns about leaving my bins out due to concerns about disabled people like me tripping and falling over the bins, and asked why they could not re-instate the old system that allowed the bin collectors to come onto property to collect the bins. I explained why this new situation causes an issue for me, I also got a waver allowing me to have my bins collected from within the boundary of my property rather than pushing them onto the street thus adding to the general mayhem. Cars on the pathways often impede my progress, and lead to me venturing into the road to get around them due to the lack of space on the building side of the car. This often necessitates me getting sighted help to negotiate the parked cars. And this can be once, or twice or thrice a day if I go to many shops. On reaching the cash machine after slamming into bins and cars, I find the cash machine is unusable
independently by me because I cannot see the screen or buttons. Therefore I need sighted help to use that machine, which is not only invasive into my privacy, but takes a long time and causes stress to me due to the nature of the layout of the machine and its surroundings. I then go to shop in my local store, and for this I need help in finding products, reading labels etc, and then time taken to help me read the cooking or usage instructions on food and chemical containers. I also wish to purchase a birthday card, and need help with reading the card, and writing it too. This necessitates help from a sighted person also. Going home, I find scaffolding blocking my path. This means I need to try and find sighted help to get past this scaffolding in a safe manner. Some people have also taken to riding bicycles around the pathways of my local area, which causes me frustration and danger due to their inconsideration for my welfare and for that of other
pedestrians. I find myself often diving into fences and doorways to get out of the way as I hear a bicycle coming close to me, sometimes nearly too late to save myself.


This causes stress to me, and I come back from the shops feeling like I’ve done a days work, but I’ve only been out for an hour or so. Once at home, and have stored my goods from the shops, I wish to go shopping in my local town. I get on the bus, and need help to find a seat. I want to get off at the local bus station so I have told the driver of my destination when I get on. The bus station comprises lanes of busses, with no adequate provision for blind pedestrians. I need help from the bus driver to negotiate the lanes and get me safely to the other side of the road.


I wish then to go to a shop that I have heard of, but do not know the route to. Knowing part of the route, I find my way as far as I can, but then need to ask sighted people for help in finding the shop. Once this is found, I then need to find assistance inside the shop to help with finding the products I wish to purchase and find out about what those products look like, how they work etc. Once I have purchased my products, if the box or bag in which the product is contained is large, I need help carrying it, as I need to use my white cane to ensure my own safety, and large boxes are a problem for me to carry. This would mean an assistant helping me to the bus stop or to a taxi cab if the box is extremely large and unwieldy on a bus.


Day 3. I wish to go to a restaurant. I take a cab to the restaurant door, and a friend meets me at the door. I then need guiding into the restaurant, help finding my seat, and then help reading the menu, ordering drinks and reading the menu. Reading the menu entails describing everything on that menu, reading headings, and verbose descriptions of foods on that menu, as well as describing drinks. I then need help finding my own drink when it is placed in front of me, and the positions of cutlery, napkins and foods on my
plate. I then need help finding a toilet. The assistance of a sighted person is needed by me to find a gender specific toilet or an accessible toilet for disabled people. Then I need help finding my way around that
toilet, finding basin, toilet, toilet paper etc. I then need help back to my seat. I need help to the cab after the evening is completed.


Other things I need attention with due to me being blind are choosing clothes from a store, Cd from a music store, or finding products in other shops, as product names are unreadable and colours unrecognisable by me due to my sight loss. I also need help on a daily basis programming my video recorder, I use my computer for this, but if I did not have that, I would need sighted assistance.


Due to the focus on cuts, the disabled have become fair game as it were. Some of the disablist ranting I’ve read on social media in the last weeks makes me sick. the commentators would never talk of race, gender or sexual orientation as they do about disabled people, oh, yes, that's because the style of comment I’ve read, if applied to race, gender or sexual orientation is illegal under criminal law. It’s not if spoken about disabled people. It’s seen as fair comment. It’s distressing, disgusting, and totally unacceptable to read the slurry coming, with thought and careful typing, from some commentators. Disabled people are the final minority without true rights in the UK. yes we have the DDA, but look at that law closely, and all it is is guidance,, which says, "it would be nice to treat disabled people in a considerate manner, though it doesn't matter if you don't, as there are no penalties at all if you break the law." there are no criminal elements to that law, and any litigation is too expensive for the disabled person to take on alone, so prosecutions under the DDA just don't happen.


Disabled hate crime is considered at the level of anti social behaviour when sentencing, unless hatred of that disabled person can be proven, which is hard to do at present.


As for ESA, ESA, while a good idea in principle will not bring change, it will only bring poverty, as disabled people are written down to be, quite literally, less disabled than they actually are. Disabilities do not go away just because a form says they do. I'm all for disabled people working, but the support has to be there. Has to be meaningful, enforceable, and long lasting. For instance Most Employers won't employ blind people for the reasons above; too much expensive equipment or human assistance is needed to get a basic job done. And that's before you even consider the underlying attitude most hold towards blind people, which frankly harks back to the 19th century, or before in my opinion. How the government can even think of forcing disabled people into work before they give disabled people legally enforceable rights in and out of the workplace is beyond me. I have read comment by disabled people who are very worried indeed about the cuts, and they are cuts for the sake of cuts.


It has emerged that the government can't even get the figures right on benefit fraud. Ian Duncan Smith says
five million pounds lost to fraud, the DWP research says something smaller than that. It’s cost cutting at the expense of disabled people's lives.


Shame on you prime minister David Camran, secretary for work and pensions Ian Duncan Smith, and most of all George Osborne. Before you cut support for disabled people, please become aware of the problems they face every day in their own homes and in daily life. Then maybe you would not cut, but increase help for disabled people. Isn't the measure of a society how it treats it’s most vulnerable? In the western world, Britain needs to hang its head in shame and embarrassment.


Thanks for reading.

1 comment:

binks said...

Hi martin,

After seeing your reference to the blog on the Vi-gen-access list I gave your story and one or two others a read.

I found what you said very interesting.