It’s bedtime.
You make you’re way to your bed but before you do, you turn off the lights.
Some people may think you need light to see your way but sometimes your other senses can help you get through the pathways that are thrown your way.
At last you get to your bed and can relax,
You stretch out and get comfortable as can possibly be.
As the time is ticking you wait for your eyes to shut.
But before you do, your mind can wonder about the things that happen in life.
Questions like, ” Why does this happen to me?” or such things in that way.
You finally dose off to sleep.

You wake the next morning and get ready for the day to begin
But you still see darkness from the time you sleep at night and the time you wake from sleeping in.
Cause you’re a 16-year-old that got in a car accident that blinded you to never see life again.
It was upsetting to you at first but you’ve learned to enjoy life without being able to see.
You chose not to be depressed about it and made your life the best that it could be, since it’s what you make out of it to be.

Anyone reading  medical research headlines in recent years has become aware of how charged the topic of gene therapy is. Recent clinical results treating certain types of blindness and adrenoleukodystrophy may leave people re-examining some of their thoughts and positions.

Leber’s congenital amaurosis is an inherited eye disease that appears shortly after birth. It’s caused by a recessive gene called RPE65 that controls production of an enzyme that recycles retinol. The result is sluggish pupil response with blindness or severe vision loss which until recently, doctors have been unable to treat. Doctors at both Children’s Hospital of Philadelphia and London’s Moorfield Eye Hospital have had substantial success treating this disease with gene therapy. The physicians surgically deliver modified adeno-associated virus (AAV) prepared by a Seattle company called Targeted Genetics behind the retina. AAV can affect both dividing and non-dividing cells with in the body and begins recoding the DNA for proper formation of the enzyme. One of the keys seems to be treating it at a young age, but the results of these trials particularly in the Philadelphia study are astonishing, and appear to be free of side effects according to Moorfield’s article in April 2008 New England Journal of Medicine article. Pretty astonishing.

The astonishing advancements don’t just stop there. Adrenoleukodystrophy, the subject of the 1992 film Lorenzo’s Oil, is another inherited disease. Instead of blindness adrenoleukodystrophy leads to progressive brain damage and death. Sufferers of adrenoleukodystrophy fail to transport a necessary enzyme for breaking down very-long chain fatty acids to where it’s needed. The eventual build up leads to damage of the adrenal glands and an inability of the body to myelinate nerves, leaving them unable to conduct impulses. The November 2009 publication of Science magazine has published the results of a French study in which two children with adrenoleukodystrophy have been successfully treated using gene therapy.

While both of these studies are in clinical trials and not yet available to the public they do offer hope of exciting advances in the near future. Additional studies not yet in clinical trials such as the University of Washington’s success in producing color vision in squirrel monkeys or the successful growth of bigger, stronger muscles in monkeys at Nationwide Children’s Hospital in  Columbus will undoubtedly lead research relating to color blindness of muscular dystrophy. Either way, the results of gene therapy are beginning to bear some of the fruits long talked about in the years of debates.

Moorfield Eye Hospital Information

Children’s Hospital of Philadelphia

Adrenoleukodystrophy Article

University of Washing Color Blindness Treatment

In October I got a message that my blog had been nominated for a “Lovely Blog” award. I figured the comment was spam. Not that I don’t think my Safe & Sound blog is lovely. It’s just that I’d never heard of a “Lovely Blog” award. And the nomination came from a lawyer. Not to be trusted, right?

Wrong. Turns out that both the lawyer guy, and the nomination, are legit. Matthew Stoloff is a civil rights attorney with an interest in disability discrimination law. He wants to change the way the public thinks about people with disabilities, and he nominated the Safe & Sound blog because he thinks it helps the cause.

In order to accept a “Lovely Blog” nomination, a blogger has to follow three rules:

• Post the news of your nomination on your blog together with the name of the person who nominated you, plus the link to their blog.
• Pass the nomination on to 15 other blogs you’ve discovered.
• Contact your 15 bloggers to let them know they’ve been nominated for the award.

That requirement to nominate 15 other blogs really stumped me. There are so many good blogs out there, how do you decide? After two months of contemplation, I’ve finally managed to home in on my 15 Lovely Blogs. Here they are — along with their tag lines.

Blogs about Writing

The Empty Pen “The thrill of writing, the agony of editing”

Smells like happy “I don’t have all of the answers. Neither do you. As long as we
both can admit that, we can have some pretty fantastic conversations, don’t you think?”

Sandra the Future Journalist “The purpose of this blog is to share my experiences (both positive and negative) as a college student with a visual impairment.”

Teaching authors “ Six children’s book authors who also teach writing.”

Defective Yeti “Haphazardly Spellchecked Since 2002”

Dogblogs

Bark “Bark is the magazine (and blog) of modern dog culture—it speaks to the serious dog enthusiast.”

Paws for Thought “A diary of a woman in Northern Ireland training and working with her first guide dog.”

Shandy Dog at Work “In 2003 Shandy was the inspiration for starting Sit Stay Read, a literacy organization here in Chicago that brings kids and dogs together for reading fun.”

Disability-related blogs

American Foundation for the Blind blog “Expanding possibilities for people with vision loss”

Easter Seals and autism blog (In the spirit of full disclosure, I must admit: I am paid to moderate this blog, so of course I think it’s lovely!)

In the Center of the Roof “The day to day ramblings of a young woman who used to be able to see and now is blind. It sounds much more dramatic than it is.”

Matthew Stoloff’s blog “I hope I can help change the way the public thinks about people with disabilities.”

Other blogs

Sloopin “A South Loop Blog”

Truthful Enthusiasm “Discussing Contemporary Issues through The Arts”

Reading with Scissors (Another disclosure: This is my husband Mike’s blog)

Congratulations, nominees. Happy blogging!

This is the first of a series of 4 blog entries o on macular degeneration. These are maybe the most accessible stories that have been coming my way, as they affect you and me dealing every day with this condition.

Living with Macular Degeneration

About Macular Degeneration – wide variety of background information.

Alternative Treatments for Age-Related Macular Degeneration | Alternative Medicine Blog by AHIMA – some of the information here seems completely at odds with recent research (note naive assumptions about how relaxing the blue of the ocean is). I include it to try to be fair to different viewpoints, but….

AMD Alliance International Offers Holiday Eating Tips to Save Vision

Approaches to Select Best Colors for your Sun Glasses – the short answer is yellow or brown, not too dark.

Blind baby boomers: Will you be one? – Boomer411

Bristol artist Hank Adlam sight back | Bristol news – Hank Adlam has had wet macular degeneration, but following Lucentis treatment he has a new exhibition of paintings, this December in Bristol.

British Columbia eye drug policy seen as controversial – Lucentis is approved but Avastin is apparently used.

Chelation Therapy for Macular Degeneration – by Dr. Edward Kondrot – according to this article, this alternative therapy drives various excess minerals from the body and may be helpful in many conditions, MD included.

Color perception and macular degeneration by Dan Roberts, mdsupport.org

Disability News | PatriciaEBauer.com » News Archive » Woman fights to use adaptive technology during bar exam – Stephanie Enyart has a form of macular degeneration, and is fighting for the right to use assistive technology for her bar exam.

[Video] DrCobiEyesight.mov – short TV clip promoting supplements.

Eccentric Viewing Helps Macular Degeneration from Vision World Wide, Inc. – use the best bits of your sight to see better.

Fluorescein Angiography – A Test for Macular Degeneration – what you can expect.

[Video] HealthFirst-Glasses when surgery isn’t an option – illuminated glasses for low vision.

Herbal remedies need real scrutiny – CNN.com – remedies shouldn’t be excused regulation says conservative-leaning doctor David Frum.

[Video] If I Had – A Family History of AMD – Dr. Abdhish Bhavsar, MD, Phillips Eye Institute

International Video Contest on Topic of Age-Related Macular Degeneration | ScanGrants™ – entries in by end Feb 2010.

[Audio] Kiss Your Life Hello – Dr Michael Samuels, retinal specialist and author of
Macular Degeneration: A Complete Guide for Patients and Their Families, talks about macular degeneration and related matters.
Direct link to mp3 audio 

Kiss Your Life Hello Podcast Feed

[Video] Living with macular degeneration – short video about dealing with MD using visual aids.

[Video] Living Well with Macular Degeneration – dealing with sight loss and the depression that may result.

Looks Like….Smells Like….But it is Not Macular Degeneration | A Retina Eye Blog – several eye conditions share symptoms with macular degeneration but are not macular degeneration. 

A Retinal Blog 

RSS Feed

Lycopene – A Colorful Carotenoid – Biotta – Purely Organic – may lessen the risk of many conditions, including macular degeneration.

Macular Degeneration – A threat to your retirement plans « Myhealth Guardian – useful general account of macular degeneration.

Macular Degeneration Forum, Macular Degeneration News – no registration required.

Macular Degeneration News 


RSS Feed

Macular Degeneration Resource Books

Macular Degeneration Treatment Help site in blog format. 


RSS Feed

Macular Degenerative Disease, Macular Disease, Macular Degeneration Symptoms – background information, forum, helpful technology. 
AMD Updates 

RSS Feed

MDJunction ARMD Support Forums – a friendly, supportive community for folks with MD.

[Video] Michael Feaver: Living with Macular Degeneration from AMD Alliance International

New vitamin pill against blindness – Herald Scotland – this is our old friend Lutein.

NHS Evidence – eyes and vision news feed – stories from the UK health service.

Pioneer’s vision gives hope to eye patients – Yorkshire Evening Post – Yorkshire Eye Hospital is about to offer Lipshitz Macular Implant, a telescope-like lens inserted into the eye.

Prevent Macular Degeneration – Info Barrel

QLT to pay $20-million to settle suit – reportonbusiness.com: globeinvestor.com – dispute centres around royalties on Visudyne, a macular degeneration drug treatment.

RetinaEyeDoctor.com | A Retina Eye Blog – a site mainly about macular degeneration and diabetic retinopathy

Review of Diabetic Retinopathy; Signs, Symptoms and Treatment Options | A Retina Eye Blog

Sensory Impairment in Older Adults: Part 2: Vision Loss from NursingCenter.com

Similar Impact on Quality of Life from Wet and Dry Macular Degeneration | Macular Degeneration Support Canada

Smoking Can Make You Blind

Symptoms and Causes of Macular Degeneration | cvideomag.com

Taking Lutein For Macular Degeneration – Preliminary Studies Are Promising | Anti-Aging Guide – but zeaxanthin is also included in many antioxidant formulas to potentiate the lutein. Possible to measure antioxidant levels and recommend supplements with greater accuracy.

Thats Health: See the benefits of a healthy lifestyle – good and bad choices can make a big difference to your eyes.

The artist’s vision: Sylvania ophthalmologist studies how painters’ vision problems affect their work – Monet, Degas and Van Gogh showed evidence of failing vision in their work. An ophthalmologist looks at artists and vision.

[Video] Topical Therapy for the Treatment of Neovascular age-related Macular Degeneration – an eye-drop treatment, Pazopanib, developed by GSK. Also relevant,
A Study To Evaluate The Safety, Tolerability And Pk Of Pazopanib Eye Drops In Healthy Adult And Elderly Subjects. – Full Text View – ClinicalTrials.gov

Unblinded With Science: Technology to Restore Vision – chip technology could help those who have macular degeneration and retinitis pigmentosa.

Understanding Macular Degeneration… Will I Go Blind? | Senior Sampler

UV Damage To The Eyes – Why You Should Wear Sunglasses

Vision Is Linked to the Mental – different kinds of vision loss have different mental effects, study of Mexican Americans suggests.

What is Dry Macular Degeneration vs. Wet Macular Degeneration

Would taking 91 milligrams aspirin daily cause the macula to bleed more? – American Health Assistance Foundation.

Zeaxanthin – What You Need to Know About This Important Nutrient and Your Sight – this isn’t to suggest that it’s the only important nutrient.

The next 4 entries in this blog will contain links to recent stories about macular disease. So many items have come through that I will be dividing them into 4 sections, each as a separate entry.

The subject matter of these will be…

• Charles Bonnet Syndrome, the condition where people with sight loss experience visual hallucinations
• Living with Macular Degeneration, including currently available treatments, supplements, techniques for getting through your day
• Research – including treatments that are not yet available generally to the public
• Stem Cells – this subject is so prominent, it really had to be in its own blog entry. While some sorts of stem cell research worry some people ethically, they will be with us as viable treatments sooner or later. I have included material that explores different points of view.

<pOn, then, with something of a macular degeneration bonanza!

]]> http://byesight.wordpress.com/2009/11/27/the-somewhat-unique-opportunity-to-go-blind-twice/ Fri, 27 Nov 2009 21:35:59 +0000 Neurotic Nomad http://byesight.wordpress.com/2009/11/27/the-somewhat-unique-opportunity-to-go-blind-twice/

For those who haven’t been following along from the beginning:

In January, I was a normal guy who just happened to be winning a multi-decade battle with an incurable eye disorder. By March,I couldn’t drive. By April, my tunnel vision finally became an actual tunnel.

It turned out, in addition to glaucoma, I had cataracts. Unfortunately I didn’t have the money to have them removed right away, so I decided to look at my situation as a chance to practice for the inevitable. 2009 would be my Summer of Temporary Blindness.

Then in May, I found out that the glaucoma has been stealing vision, too, and I wouldn’t be “going back to normal” like I originally planned.

Then What Happened?
I had a surgery, an accident, and another surgery. During all that time, my eyeballs were swollen, bruised, and healing from incisions – all things I can’t see through. The circle I view the world through shrank to the size of a fist at arm’s length.

Then I began to heal. The circle grew a little every day, but was very blurry. I could only read the largest of text.

Last week, after four months of healing, I was able to get my new eyeglass prescription. It’s five times the strength of the pair on my face as I type this.

Where Do You Go From Here?
I pick up my new glasses this/next week.

The circle has widened enough to where I feel like a fraud (again) with the white cane… until I trip on the sidewalk or walk into coupon dispensers at the grocery store.

I still can’t see the ground in front of me, but I can see to the right and left far better than I have in months.

Warming up the car for my wife, I noticed that I could see the driver’s side mirror again. I wonder if I could drive. I wonder how many cars get driven through windows and walls by people having this same internal dialogue.

Does this mean you aren’t blind anymore?
I don’t know. Does it? I can’t drive, I can’t walk without staring at the ground or using a stick, and I still have that incurable eye disorder.

Going into this, I thought this was my chance to have some Blindness Practice before I go blind “for real”. When I learned it may not be temporary after all, my perspective changed.

For several months I didn’t know if any of my vision would return. The only thing certain was that large portions of it wouldn’t be. This changed me in ways I could never have predicted – even with fifteen years of preparation.

I thought it was going to be all about white canes and braille. The lessons I learned this summer go much deeper than that. I am different because of this experience.

So, are your eyes okay, now?
No. Even after the successful surgeries my pressure is too high. I’m just not going blind as fast as I was six months ago.

…and from the inside, it looks like it’s going to opposite direction. Even though I know I have less vision than a year ago, I can see better than I could two months ago so I FEEL like I’m less blind.

That’s my old friend Denial coming back for a visit.

What’s that Denial? You have my car keys? Where are you going?

]]> http://abluteau.wordpress.com/2009/11/26/feeling-in-the-dark/ Thu, 26 Nov 2009 15:35:07 +0000 ab http://abluteau.wordpress.com/2009/11/26/feeling-in-the-dark/

Computer mice for the blind

A tactile mouse helps blind people to use the internet



COMPUTERS have become such an integral part of life, in the rich world at least, that even social networking is done online. The blind, however, are often excluded from such interactions. Now a system has been developed to make it easier for blind people to navigate the internet, use word-processing software and even trace the shapes of graphs and charts. Its inventors hope it will enable more blind people to work in offices.

The system developed by staff at Tactile World, an Israeli company, uses a device that looks similar to a conventional computer mouse. On its top, however, it has two pads, each with 16 pins arranged in a four-by-four array. Software supplied with the mouse translates text displayed on the screen into Braille.

In traditional Braille, numbers and letters are represented by raised bumps in the paper of the page being read. The pins on the mouse take the role of these bumps. As the cursor controlled by the mouse is moved across the screen, the pins rise and fall to represent the text across which they are moving. One pad represents the character under the cursor, the other gives the reader information about what is coming next, such as whether it is a letter or the end of the word. This advance information makes interpretation easier. As the user reads the text, the system also announces the presence of links to other websites. And the user can opt, if he wishes, to have the computer read the whole text out loud.

The mouse’s software has an “anchor” feature, to hold onto the line of text that is being read. Alternatively, a user can click a button on the mouse and the text will scroll along and run under his fingers without him having to move the device.

When he encounters a graph, map or other such figure, the pins rise when the mouse is on a line. The number of pins raised reflects the thickness of the line. If he strays from the line, the pins fall. He is thus able to trace, say, the curve of a graph or the border of a country. More complex diagrams can also be interpreted. Dark areas of maps, for example, can be represented by raising all the pins, while light areas are places where all the pins are dropped.

Not only is the tactile mouse more advanced than existing technologies for blind people, it is also cheaper than existing Braille readers, which plug into a computer and typically display 40 Braille characters at a time. The tactile mouse costs $695, rather than $3,500-8,000 for a Braille reader.

__________

Full article and photo: http://www.economist.com/sciencetechnology/displayStory.cfm?story_id=14955359&source=hptextfeature

]]> http://empathyinthecontextofphilosophy.com/2009/11/25/one-more-thought-on-experimental-philosophy/ Thu, 26 Nov 2009 03:18:39 +0000 Lou Agosta http://empathyinthecontextofphilosophy.com/2009/11/25/one-more-thought-on-experimental-philosophy/

Experimental philosophy really started to get traction in John Locke’s engaging answer to William Molyneux’s thought experiment about the individual blind from birth who suddenly gets his vision. What happens? In a daring experiment, which gives the subtitle to the book, Crashing Through: The Man Who Dared to See (Kurson 2007), Mike May’s immune system was chemically “killed” so that a stem cell transplant could be used to restore the nerves in his retina. As a result, May’s eyes and optics were restored to a state that was near perfect. This is in contrast to the experience of the visual world that he encountered after the bandages were removed following the last in a series of operations to restore his sight. The operation was a success in that the optical apparatus was functioning as designed. But there was a “but…” In short, the auto at which May was supposedly looking did not make sense as a visual experience. More precisely, Mike’s visual experience of the auto or other things did not make sense. His visual apparatus did not make sense out of the inputs that the experience of the would-be yellow auto was providing. His visual apparatus did integrate the input caused by the auto (which auto, of course, was available through other sensory modes). Given his visual experience, Mike was inferring that the auto was yellow; he was not in direct contact with the yellow station wagon. Note well that Mike May was inferring that the auto was yellow, which means he was not directly in touch with it – this was not normal. This must be underscored. May’s use of inference to get in touch visually with the auto was significantly different than what everyone else does. In spite of all the operations, he did not have normal vision. The swirling constellation of colors and shapes did not have sense as a coherent, unified, objective thing with a spatial boundary. This counts towards Searle’s naïve realistic point that viewers do not infer things, they see them, relate to them, interact with them, etc. However, this also counts as evidence that sense and the sense of objects in the world is constituted by acts of intentionality that are prepredicative, nonlinguistic, nonverbal – in this case, acts of intentional synthesis of the kind invoked by the later Husserl. What did you think the experiment was going to show?
One lesson? Maybe the experiments collected by Knobe and Nichols (Knobe and Nichols, Experimental Philosophy) were good, but they were not that good. Maybe the analysis was good, but not that good. The idea that analytic philosophy – or any philosophy (Continental, Oriental, etc.) – has to be protected from experimental philosophy is questionable. (See http://experimentalphilosophy.typepad.com/experimental_philosophy/2009/11/levin-on-xphi.html – a site worth noting in any case.)
Another lesson? Philosophers ignore the advances of empirical science at their own peril. It is particularly interesting when diverse Gedanken experiments have the brains (central nervous systems (CNS)) of individuals hooked up by imaginary wires. Depending on where you draw the system boundary, different philosophical paradoxes arise. (This deserves further discussion, forthcoming.) Meanwhile, science advances. Then it turns up that people are indeed already hooked up by the action of mirror neurons. True, there is still action-at-a-distance – but that makes it even more interesting. This is also where the connection with empathy occurs (though this post does not explore it.) Philosophers then have to change the Gedanken experiment so that the hook is not too similar to what we now know to be the case in the everyday world – we are corrected in fundamental ways experientially as our organisms resonate in reaction to one another. Please do not tell me that Descartes ever envisioned that one as he sat alone in his warm room meditating on first philosophy.
The third lesson? The main threat to analytic philosophy (or continental philosophy or your choice of philosophy) is not experimental philosophy. It is analytic philosophy and please make the corresponding substitutions for Continental, Oriental, etc. As soon as philosophers loose touch with the method of sustained inquiry that drove Socrates, Wittgenstein, Nietzsche, Austin, etc. the game is up. What Kant called “dialectical illusion” looms large and curious puzzles take the place of fundamental inquiry into the big issues that attract students, professionals, people to philosophy in the first place. Further details on the strengths and limitations of experimental philosophy are to be found in an unpublished essay by yours truly on the relevance of neuro-phenomenology to the philosophy of empathy subtitled “The Light Goes on!” at this site.

]]> http://shapeandcolour.wordpress.com/2009/11/24/tom-geraedts-eros/ Wed, 25 Nov 2009 04:24:59 +0000 shape and colour http://shapeandcolour.wordpress.com/2009/11/24/tom-geraedts-eros/

My fascination with colour theory has led me into studying not just the science of colours but also their associated anomalies: colour blindness, synesthesia, and to total blindness itself. Make no mistake: blind people see… just not with their eyes.

“Eros” is an incredible short by Tom Geraedts that explores this idea. Our senses are all indelibly connected to our thoughts, emotions, feelings, and all over senses. The lack of one actually augments all the others. So what does a blind person see through their mind’s eye when their brain starts to feel; the part of the brain that creates “sight” is still active, it’s the connection to the eyes that’s decided not to co-operate. With its normal route cut off, where does it detour to to visualize the world that’s being sensed around it?

]]> http://anne-whitaker.com/2009/11/24/eyeball-to-eyeball-with-tooth-sucking/ Tue, 24 Nov 2009 16:08:14 +0000 annewhitaker http://anne-whitaker.com/2009/11/24/eyeball-to-eyeball-with-tooth-sucking/


Eyeball to eyeball - with politics!

Tooth-sucking – ie slow inhalation of air through lower teeth (or, even worse, dentures) – is a very bad sign.

Plumbers do it. Electricians do it. Computer geeks do it. Builders are especially prone to it. When accompanied by head-shaking and eyebrow knitting, it is a particularly bad sign, usually meaning you are going to pay – lots – in money, time, inconvenience and often all three.

Here I am, sitting in a stout black steel chair fronted by all sorts of high-tech equipment, a range of which has just been addressing itself in great detail to my eyes for the last half hour or so. The kind and painstaking ophthalmologist is now consulting with the tall, grey-bearded, grave consultant.They are talking ophthalmo-speak to one another. I begin to feel very tense, apprehensive. It sounds like tooth-sucking. Oh dear.

“Yes, I’m afraid you have glaucoma in your left eye. If we start treating it now, you will probably retain your sight well into old age.”

“Oh well,” I think, “at least my right eye is ok.”

As if reading my mind, the consultant goes on: “But this condition is bilateral. It is likely to affect your right eye too, eventually.” “How long is eventually?” I wonder, feeling like a small rodent trapped in a corner by a big man wielding a broom with his back to the exit door.

On to discussion of treatment options. Drops, for starters, to reduce the pressure in my left eye, at present higher than it is in the right.

[questions I forgot to ask, (i) : how does this relate to my overall blood pressure, on the low side of normal?]

One type of drop, a form of beta-blocker, will “lower your heart rate, limiting your exercise capacity….” No thanks to that one, unless I get desperate and nothing else works. Rushing about everywhere on foot is my main transport mode, and I rely on that with a little light hill-walking from time to time to keep me fit.

Option two, which I decide to try for starters, has a distinctly surreal dimension. Apparently it will turn my affected eye pink [questions I forgot to ask, (ii) : for how long? For ever?] and cause my eyelashes on the bad eye to grow longer and thicker.

“So I’ll go around looking like a cross between Dracula and an aging fashion model?”
“No,” says the grave but quietly smiling one, patiently, already realising he has a drama queen on his hands from now until his well-earned retirement.“ When we have stabilised the left eye, you can even up the eyelash balance by rubbing a little of the drops on to the right eye’s lashes.”

At this point I am visualising going around in a large brown paper bag with eyehole slits.

Shortly after my arrival at the brown bag interim solution, the session is over. Having asked various questions, I have not been my usual forensic self in eliciting answers. Being told you are slowly advancing towards blindness, sooner or later depending on treatment, does not sharpen the mental faculties.

[questions I forgot to ask, (iii): Just exactly how bad is this, NOW?]

I sit for some time with my husband, waiting for some photographs to be taken of the back of my eyeballs – partly for research purposes.  I come from a family psychological matrix where one’s default position in any crisis is the worst option, always. Guide dogs and white sticks feature prominently in our conversation – or rather, my monologue.

Then we walk home, having had three hours of NHS Scotland’s time, state of the art expertise, professionalism and kindness. All for free. It is a beautiful, mild autumn day, the streets rusty with fallen leaves. The verb “to see” and the noun “vision” have just taken on a new significance.

It would be totally dishonest to pretend that behind the – I hope! – lightly ironic, witty tone of this article I am not rather upset both in the short and the prospective long-term, by the implications of being diagnosed with glaucoma.

Insouciance would not be normal. But writers are not ‘normal’. All of us to a greater or lesser degree have a streak of psychopathy which makes every vicissitude of human experience – including our own – potential writing fodder. In the midst of my entirely appropriate angst is arising a tingle of anticipation: a new seam to be mined – and shared – has just been opened. Should I set up a new blog? What could I call it? “To the White Stick”, perhaps? Or – this is a bit more dignified, don’t you think? – “The Glaucoma Diaries.” I could have a sub-theme called “More bits fall off” for my popular column “Just let me get old, ok?”…….mmmm…….

Watch this space!

( ps one of my friends, when told the news, shrugged his shoulders, remarking: “Oh, well, c’est la fucking vie, innit?” I don’t think there’s an answer to that, yet….but give me time, give me time!)

]]> http://misstamar.wordpress.com/2009/11/23/diy-botox-a-stretch-too-far/ Mon, 23 Nov 2009 16:40:06 +0000 misstamara http://misstamar.wordpress.com/2009/11/23/diy-botox-a-stretch-too-far/

EXPERTS have sent out a warning to Brits buying DIY botox kits online and injecting themselves with the drug.

Injecting the wrinkle smoothing jab can cause paralysis and blindness.

Figures show a rising number of Brits in the recession are using cheaper homekits, costing around £100 rather than spending £250-£300 for surgery treatment.

Buyers learn how to inject themselves using crude injection sheets or by following videos posted online.

Gwen Davies of the Clinic group Transform, based in Manchester said: “Buying botox off the internet is very dangerous, bypassing the procedures which are in place to protect the public.”

In the UK, Botox is a prescription-only drug but can be bought from internet sites, mainly in Russia and the Far East.

Online Pharmacy Escrow is a Canada based drug store also selling Botox online.



Sometimes people take it too far,and botox goes wrong

]]> http://lightafiretonight.wordpress.com/2009/11/23/in-the-city/ Mon, 23 Nov 2009 16:32:40 +0000 Ajit Menon http://lightafiretonight.wordpress.com/2009/11/23/in-the-city/

Too many demands,
clamor in his head,
Desires, fighting
for their pound of flesh,
Trapped in their hands,
a stringed puppet,
he dances
on invisible threads,
they won’t stop
till he’s dead.

Each day arrives
towing unyielding wants,
unseen,
mercilessly tying him
forever to his needs,
chained servitude to commit,
life devours him,
nails driven through his flesh
slowly he bleeds to death.

Blinded by fear
toiling incessantly,
a moment’s peace
now a heavenly dream.
Dragging his body
towards a damned destiny,
born only to fall
into that bottomless pit,
where
his brothers creed rots,
lay in wait for him.

Another soul disappears
helplessly, alone
in the society, vacant eyes
bless the burial service
no one cries, everyone’s busy.

The dead must stay deceased,
their stories, instantly buried.
Civilization moves ahead
in a hurry,
while a million more wait
in line quietly, dreaming
of the good life, in the city.

]]> http://nansan.wordpress.com/2009/11/22/jose-saramago-seeing/ Sun, 22 Nov 2009 13:54:53 +0000 nan http://nansan.wordpress.com/2009/11/22/jose-saramago-seeing/



It’s hard not to gallop through prose that uses commas instead of full stops, but once I learned to slow down, the rewards piled up: his sound, sweet humour, his startling imagination, his admirable dogs and lovers, the subtle, honest workings of his mind. Here indeed was a novelist worthy of a reader’s trust. So at last I could read his great book – or his greatest until its sequel.

-Ursula K Le Guin on Jose Saramago’s Seeing, which I recently finished after swapping it with Blindness eons ago, the same woman (Julianne Moore above in Fernando Meirelles’ movie adaptation) who didn’t lose her vision now absurdly accused of an anti-state conspiracy, a massive blank voting in the city elections, a slower read as you watch his devices unfurl in reverse, but just as amazing.

]]> http://allaboutmejennie.wordpress.com/2009/11/22/raising-ross-pt1/ Sun, 22 Nov 2009 10:40:56 +0000 jenniemacaulay http://allaboutmejennie.wordpress.com/2009/11/22/raising-ross-pt1/

Good morning.

It’s a little after six thirty on a saturday morning, and I’m writing this somewhat difficult entry whilst still sitting in bed. I must confess that I now write my entries as “word” documents, and then copy/paste them into the blog afterwards, in case of mishap etc, and I strongly suspect that since this will be a long entry, it will take me more than one attempt to finish it.

It seems ironic, indeed almost scary, that I should be writing about ross on his birthday. Ross is 15 today and, as you will know by the title of this entry, this is about Ross, how/when he was born, his life, the diagnosis of his disability, and the multiple difficulties I faced raising him, taking into account my own disabilities, and the complexities of us having “two out of five” senses, effectively, missing between us.

Ross is an angelic teenager now…at least, for the most part. He has his faults, he shouts if the dog barks: he hates people singing, which is a nucence, because I’m an avid music lover: he loves stupid cartoon type programmes on tv, and watches the same twaddle incessently over and over again: he is obsessed with routine, but that’s the nature of the beast, I’m afraid: he is very inclined to “dawdle”, and often needs to be chivvied along a bit: but taking into account how he used to be…how he could well have been…my god, I have really gotten nothing to complain about.

Ross John David was born on 21 November 1994 – he was a planned baby. Like Freddie before him, he was born by elective caesarian section, because of my epilepsy.

When I was pregnant, I was desperate to know the sex of the baby, having had two boys, I wanted a daughter more than anything, but the hospital wouldn’t tell me? they said that their policy was not to tell expectant mothers because, according to their rules and, I guess, some element of experience, some ethnic families favour one sex child over the other, and would opt for a termination of pregnancy if the baby wasn’t what they wanted? I can’t comment on that, I have no wish to, I am a christian, although don’t discuss my religion with anyone unless they ask, and as desperate as I was for a daughter, I would never have terminated Ross if I had had definite confirmation of his being male. However, having carried two babies previously, there were things I had sorta learned? It’s said that a fetal heartbeat of a baby girl is normally on the faster end of the “average” rating, and a baby boy’s on the slower . . . ross’s was always slower.

I knew Ross was a boy. there was no denying it, no lying, not even to myself. When he was born, I just didn’t feel the passion…it just wasn’t there. I can’t explain, it’s horrible thinking back about it, it’s horrible writing about it, it’s not something I’m enjoying doing, but in order to get to the level of fantastic relationship we have now and how we got there, I hafta do this? the whole point of blogging about my past, my family’s past, is not only to share with you, but to relieve myself also…does that make sense?

Sorry, I’m rambling, and that’s not professional of me. I’m no professional writer, but I do have a way with words, I have often written diaries, and I know I can produce better “ramblings” than this. Still, I guess that since I’m not professional, the honest blog comes from the heart…right?

Anyhow, I digress. The passion just wasn’t there. Looking backwards to Freddie’s caesarian birth, it was a magical experience, if an operation can be magical…but Ross’s was . . . different? Granted, even the op itself wasn’t without complications, Freddie’s “cut” was straight, Ross’s wasn’t, it was sorta “smile” shaped, and anyone who’s had a c-section may understand that the upturned edges of such a scar don’t heal well…and mine were no exception.

Ross was born with what’s basically called “floppy muscle syndrome”, there is a more complex term for it, but I confess I can’t remember for sure. Something tells me it’s called “hypertonia”, but without referring to the internet for help, I can’t be 100 percent certain. If that makes me a crap mom for my lack of memory, then may god strike me off the register right here! I think, to be honest, that because the problem’s rectified itself, whereas others haven’t, it’s all just sorta passed me by? Anyway, right from the beginning the poor little man suffered. He had no sucking capacity, despite being a good weight, (just an ounce under 9 pounds, even though he was two weeks prem). The hospital tried every which way to get him to feed, but it just wasn’t gonna happen. They wanted me to breast feed, but because my enthusiasm wasn’t there, I wouldn’t support the decision…looking back, I don’t honestly think it’d have made much difference.

Ross was fitted with an “ng tube”, (nasal gastric) which basically does what it says on the tin. Milk is fed directly into the baby’s stomach via the tube, because he wouldn’t take it any other way. I was in hospital for 5 days, and Ross for a further week. When he came home, it was because I pushed for it…he had the ng tube removed, and the hospital were happy that he was taking enough milk, at a struggle, to come home. I think, with hindsight, that they’d rather have kept him in longer, and if I’d been more mature about it, it might have saved a lot of problems later, for both myself, and for Ross. But I was stubborn, and only concerned about trying to develop a relationship with this male child who, let’s face it, wasn’t going anywhere, he was mine, he was here to stay, he was a boy, and there was basically sweet f*** all I could do about it.

Some time in the early part of December that year, I can’t recall exact dates, Ross started getting some sort of cold…it happens, they all get them, and babies develop illness easily, and in most cases recover just as quickly. But Ross was the exception rather than the rule. Indeed, his relaxed muscles meant that he would often sleep longer than he should, he didn’t have the energy to wake up for feeds, he lost a lot of weight, and if he cried for milk and for any reason was not attended to in time, he would go back to sleep . . . that’s not normal is it? Indeed, I recall vividly one particular morning when I’d had to visit the benefit office close to where I was living at the time. We’d gotten stuck, waiting to be seen, and I just couldn’t attend to his needs . . . he screamed for 5-6 minutes…then stopped, and went back to sleep again. I had to wake him at home for a bottle.

I’m sorry, I digress, again! Thumbs down, miss Macaulay! After several visits to, and from the gp, Ross was sent to the local a and e by the doctor. He was admitted, and diagnosed with pneumonia. The experience was terrifying, not least because I remember asking a consultant in casualty “is my son gonna die”, and he said…and I quote…”it depends how we help him get better. In other words, he would not confirm either way, that Ross would live, or die.

That night in the hospital intensive care, when ross was “partially” ventilated, hooked upto some machinery, but not all, he suffered a brief cardiac arrest, and I was ejected from the room we were in, while they resussitated my baby son. the memory of those moments will remain with me forever..he was ok, of course, he was then fully ventilated, and I was allowed back in to spend the night by his side.

He spent a week in intensive care, and a further week on the ward. After that, he was in and out of hospital with chest infection after chest infection for the first 2-3 years of his life. He was diagnosed with asthma, and had frequent trips to hospital to go on a nebuliser, etc etc. His “floppy muscle” problem continued, and caused all sorts of “global” delay…he did not sit up until he was a year, and did not walk til he was 2.

Ross did not start to speak either. I cannot recall, (though a mother should, I guess, but in my defence there was so much going on), whether Ross ever really “babbled”? People ask me that often, especially in light of the argument about whether autism may or may not be caused by the 3-in-1 “mmr” vaxxination that babies get just after their first birthday, an argument I have mixed opinions about, and which I’m not about to open on this blog. Myself I think he did, but only minimally. At the time, of course, I had two other toddlers to care for, by the time Ross was sitting up at a year, neither Freddie nor Sam were yet in school, my work load was tough! I was in regular contact with my ex, but the relationship was fraught with it’s problems, we squabbled constantly, often in front of the children.

When he was about two years, Ross underwent tests regarding his hearing. There were concerns that he may be profoundly deaf, a concept I personally found alarming at the time and, with hindsight, although it would almost certainly not have lead to the behavioural difficulties I experienced from Ross, a double whammy of sensory loss between us . . . my god, how tough that would have made my life? How would a blind mom have coped with that? Maybes he’d have hadta learn the deaf-blind manual, in order to communicate with me?

(nb, for anyone who doesn’t know, the deaf-blind manual is communicated by touch, using one’s fingers on the hands/fingers of the deaf person to spell out words. I can tell you more if you want to know…just ask, any time.)

Anyhow, it wasn’t the problem. Intensive testing on ross, by putting him to sleep and attaching electrobes to his head, measuring responses from his brain to different levels of audio input, concluded that Ross suffered from “glue ear”, a common problem, corrected by the insertion of small “gromits”, which rectified the problem over the course of the next 2-3 years.

Once the gromits had been inserted, it became immediately obvious that ross could hear. He would jump at sounds like the phone ringing, or the doorbell, or music, which he had clearly not heard before. It was also suggested that perhaps his lack of hearing had lead to fear of his surroundings, and that perhaps he would become more mobile now that he could hear…and he did…with a vengance!!! But the speech did not come.

The speech did not come, and the behaviour was getting worse. A lot of the memories around that time are quite blurred, and I hafta say I’m struggling somewhat remembering everything I want to write in this blog, so I know it will get edited, and re-edited, as more and more things come back to my mind. But he was a bugger to care for, even at that age. It was affecting his brothers’ behaviour also, mom was having to give more care and attention to lil brother than to them: mom suffered with enough health problems of her own, (my epilepsy was getting worse by this stage, I think, we all think, it was the day-to-day stress of raising kids): my eldest, Sam, who was in school by this time, was always the clever one, and had learned many ways of taking advantage of mom…indeed, he’d admit that to anyone…he did it all his young life, but we too have a fantastic relationship now.

In April 1997, when ross was 2 and a half years old, he was visiting a paediatrician at Ealing hospital, in West London, near our home. After several visits, ross was diagnosed with autism. It was no real surprise to either myself, my family, or my closest friends, and indeed, just to have a name for the behaviour patterns was in itself some sort of relief, but nevertheless it tore me apart. I had a disabled child: the disability, however mild or severe it turned out to be, would never, ever go away, it was there for life: he would need specialist education: social services intervention: he might not talk: I mightn’t be able to cope with him: what about his brothers..how tough on them: why did it hafta be me…I already had two disabilities of my own…why couldn’t someone else have had him: all these thoughts flooded my mind, night and day, day and night…for what seemed like an eternity, and on the “down days”, some of them trouble me still.

Suddenly though, it seemed that there was a mass of “help” available to Ross? Help which, whether he had autism or not, wouldn’t necessarily have made his life, or mine, any easier? At the time, I had Sam in school, and Freddie and Ross in a local council run nursery. Ross was transferred to the “special needs” room, and suddenly, he was being given transport to nursery every day. All well and good, but until then, we hadta take two kids in, and one to school anyway. After that, we still hadta take one into nursery, the minibus wouldn’t take Freddie in for me, not even if there was a seat available. Now, explain to me the logic in that? It seemed to me at the time, and indeed, I still believe, there is a “gap” in the system, for disabled parents, struggling with their kids, whether their kids are disabled or main stream. It seems that if the kiddy has a disability, everyone, everywhere, will move mountains. Not that I’m ungrateful, don’t ever think that, reading this blog, because I’m not, but when it’s the parent with the disability, the provisions are far fewer.

Ross was also offered the chance to attend “pests”, an acrinim, for “parents of ealing selfhelp training scheme”. It was a registered charity, a specialist “parent/toddler” group, for parents whose babies/children had disabilities, right across the board, from the most moderate learning disabilities, to the most profound types of illness/physical impairment, indeed, several children I knew from pests are sadly no longer with us.

Ross and I started attending pests almost immediately after he was diagnosed. We were referred by the borough’s “special needs” health visitor, and at the time I think I was just so greatful for somewhere I could go and share my frustrations, my concerns, my problems, with people who not only understood me, but in many cases had either experienced the same difficulties, or were actually suffering them for themselves. At the time Ross was still doubly incontinent, and indeed, wwas so for many years, we had moved to Wales before he was fully out of pads during the night. He was also experiencing terrible bowel problems, apparently very common in people with autism, and almost every morning his badly soiled pad would be taken off, and it’s contents “smeared” all over his room . . . his bed, the floor, the door, the walls . . . I don’t need to tell you how tough that was for a visually impaired mom to deal with, often unsupported?

The time I spent at pests, as a mom in need, stood me in good stead for helping others later in life, both as a committee member/officer for pests, once Ross had started school, and more recently as a volunteer worker at our local hospital. I chaired pests for 3 years prior to moving to wales, the priviledge meant a lot to me, I enjoyed what I did, and “disability empowerment” was also good for pests, the fact that a parent with special needs was trusted to chair an established charity.

I also continued visiting the weekly play sessions long after ross started school, because my own struggles, my own experiences, proved helpful to other parents coping with the new diagnosis of a child with disability and indeed, my double-trouble story, being disabled myself also, encouraged and inspired many, and if I may say so, still does today. I remember feeling always that pests had done so much for me in Ross’s early years, so if I could help another family, it was both my duty, and my joy.

And that posative note is where I will stop, for today. The story of “raising Ross” gets worse, before it gets better, and on his birthday I don’t want to be going into some of the deepest, most distressing stages of my life, it’s not fair on me. I will warn anyone reading this blog entry though that the next one will be a distressing read, so unless you’re willing to witness a mother’s heart-felt honesty, some of which has brought people to tears in the past when it’s been told to them, you might like to give it a miss.

So for now then, it’s “ta ta” from me, and happy birthday Rossie, who has just finished building a gingerbread house with the supervision of his brother Freddie and girlfriend Janet, and they’re part-way through baking a birthday cake together.

Love always, Jennie.

Miss Macaulay’s closing lines:

“all I need to know for tomorrow is that you’re mine, mine for a lifetime…” Lyrics from “you’re the one”, by the Carpenters.

]]> http://linksthatchangelives.wordpress.com/2009/11/22/seva-org/ Sun, 22 Nov 2009 07:30:25 +0000 linksthatchangelives http://linksthatchangelives.wordpress.com/2009/11/22/seva-org/
]]> http://bethfinke.wordpress.com/2009/11/21/paper-money-that-works-for-the-blind/ Sat, 21 Nov 2009 20:34:41 +0000 bethfinke http://bethfinke.wordpress.com/2009/11/21/paper-money-that-works-for-the-blind/


Blind advocates in Chicago are handing out free Pocket Money Marker Braillers this Wednesday morning, encouraging the public to use them to mark their paper money on behalf of those of us who can’t see. Hanni and I are doing a school presentation that morning, so we won’t be able to join the demonstration. We’ll be with them in spirit, though!

The demonstration – and the brailler giveaway — is intended to make the public aware that the Treasury Department should mark U.S. currency in order to prevent discrimination against those of us who are blind. An op-ed piece I wrote about this issue appeared in Friday’s Chicago Tribune:

180 countries use printed paper money, and the United States is the only one that prints bills all the same size and color, no matter how much each bill is worth.
Last year a federal appeals court ruled that the U.S. currency system discriminates against blind people. The court decision was not a unanimous one, and some high muckity-mucks weren’t exactly happy with the ruling, either. The National Federation of the Blind, for example. NFB strongly opposed the 2002 lawsuit that led to the ruling. They figure that most blind people have found ways to cope with paper currency and say there are other, more pressing needs to address. Treasury Secretary
Henry M. Paulson, Jr. testified against it, too. He said the blind can function fine using credit cards or electronic scanners to identify different bills,
and if that didn’t work they could rely on help from others.

The NFB and Paulson do have a point. In the 20+ years I have been blind, I have never been shortchanged by a cashier. Even Chicago cab drivers – who have an undeserved reputation for being rude – have been honest with me, correcting me when I’ve made mistakes and tried to pay them too much. Still, I feel pretty stupid sometimes when a bill unfolds itself, or gets mangled up in my wallet, and I have to ask what money I’m carrying.

 

You can read the entire editorial online — it’s called Paper Money that Works for the Blind –and leave comments there at the Tribune site if you’d like. And hey, if you happen to be out shopping in Chicago this Wednesday morning, word has it that most of the free money-braillers will be handed out in front of Water Tower Place – check it out!

]]> http://diabeticmediterraneandiet.com/2009/11/21/fish-with-omega-3-fatty-acids-reduce-risk-of-blindness/ Sat, 21 Nov 2009 09:00:29 +0000 Steve Parker, M.D. http://diabeticmediterraneandiet.com/2009/11/21/fish-with-omega-3-fatty-acids-reduce-risk-of-blindness/

Age-related macular degeneration is the leading cause of blindness in Americans over 65.  Impaired vision precedes blindness.  A recent study linked consumption of omega-3 fatty acids with 30% lower risk of developing macular degeneration.  Believe me, it’s a lot better to prevent it than try to treat it once present. 

[I have a couple older relatives with macular degeneration, so I pay close attention to the scientific literature.]

What’s the best sources of omega-3 fatty acids?  Our friend, the fish.  Especially cold-water fatty fish such as tuna, trout, sardines, herring, mackerel, halibut, and sea bass.  A few plants are also decent sources, but our bodies don’t utilize those omega-3 fatty acids as well as they do from fish.

Note that the Ketogenic Mediterranean Diet has a prominent role for fish.

Steve Parker, M.D.

Reference:  SanGiovanni, J.P., et al.  Long-chain polyunsaturated fatty acid intake and 12-y incidence of neovascular age-related macular degeneration and central geographic atrophy: AREDS report 30, a prospective cohort study from the Age-Related Eye Disease Study.  American Journal of Clinical Nutrition, 90 (2009): 1,601-1,607. First published October 7, 2009.   doi:10.3945/ajcn.2009.27594

]]> http://nystagmite.wordpress.com/2009/11/20/the-blind-buzz-on-accessibility-friday-nov-20th/ Fri, 20 Nov 2009 17:47:34 +0000 nystagmite http://nystagmite.wordpress.com/2009/11/20/the-blind-buzz-on-accessibility-friday-nov-20th/


3-D Natural Interfaces Will Control a Wide Range of Gear ‘ From PC’s to TV’s and Much More, Says Canesta CEO – so with all these machines responding to gestures, how will your PC know it’s you who’s waving?


Accessible World Presents – ?Rick HHarman will talk about SendSpace and Mydropbox on November 24th.


accessible world tek talk presents the apex braillenote november 16 2009 

mp3 audio


HypnosEye Projector and Screen Set – Japan Trend Shop – works especially well with iPhones and Touch, but can be used with other backlit devices. Very portable, not even a power supply.


accessible world tek talk presents internet explorer 8 with jaws window-eyes and system access 

mp3 audio


Adobe Accessibility: AIR 2 Beta, Introducing Accessibility Support


Are PDFs More Important Than Web Accessibility? « AccessTech News – an example of a website where the web pages could be fully accessible but the content not, as it was contained in inaccessible PDF files.


BBC NEWS | England | Tees | Blind able to ‘read’ bus timetables


BrowseAloud – text-to-speech program that may help people with dyslexia and / or mild visual impairments.


Cutting-Edge Invention for Blind and Deaf-Blind Travelers Launched at Chicago Assistive Technology Conference – ClickAndGo Wayfinding Maps have narrative to direct blind and deaf people to where they want to go. They can be received on a mobile phone and saved on a notetaker.


DAISY: DAISY Members Have Launched Monthly Giveaway of Literary Classics in DAISY Format


Digital Britain: Barriers And Solutions To Internet Use By Persons With Disabilities | Gov Monitor


Enhanced Vision Offers 10 Percent Off for the Holidays – Blind Bargains – look out for accesstech seasonal offers from elsewhere, too.


Free PDF Converter – convert many file formats into PDF. Has had good reviews.


Google’s Intent on Fostering Net Access for Disabled – Tonic – so they’re going to do something about Chrome, then are they?


Internet Explorer 9 not coming at PDC | Beyond Binary – CNET News – Despite claims that IE9 will be the best ever browser, we’re not going to get a look at it yet.


Kurzweil partners for new e-reading software – The Assistive Technology Blog – free software for computer and mobile devices will facilitate buying and reading e-books.


Macy’s User Assistance Tool – this looks like the IBM Easy Web Browsing program. 

Get started with the Assistance Tool. 
This only works with Internet Explorer 5, 6, and 7.


Multilingual Braille Output For Snow Leopard | ATMac – change from English-only Braille.


Narrative TV Network Offers Visually Impaired Programming – unobtrusive description track is added to movies and TV. 
NTN web site


On Web Typography – A List Apart – with many more fonts soon available for the Web, what will actually work and be legible?


Orator Screen Reader for the Blackberry – audio by artist michel pepin products manager humanware | Accessible World 

mp3 audio download


Pact Aims to Reduce Cost of Braille Displays – US, China, Hope Affordable Technology Will Expand Braille Literacy


Possible Free Web Space for Your Own Blindness-Related Website – Blind Bargains – got an idea for a cool web site on a blind topic? Why not get in touch with these guys?


reCAPTCHA: Stop Spam, Read Books – the audio alternative to CAPTCHAs, and more.


Screen Reader User Survey Results – WebAIM – WebAIM has now conducted two screen reader surveys. These are results from the second one.


Tables « PDF Accessibility Documentation – it may be hard work, but proper tables in PDFs aid a great deal in accessibility.


Technology failing disabled net surfers: forum


Thanksgiving Tech: Demy Recipe Reader » ZiggyTek » Blog – a digital recipe box that can sync with your computer. The font can be adjusted but there isn’t apparently any speech or Braille.


The iPhone Is Most Popular In The U.S, Not So Much Overseas » ZiggyTek » Blog – Mozilla Firefo


The Monomouse – useful for people who want a simple magnifier, but be sure to order the right model (different ones for TV and PC).


Thunderbird 3 is coming out soon, and it’s accessible!


U.S. Colleges and Universities Partner with Bookshare To Expand Collection of Accessible Textbooks for Students with Print Disabilities


Web Usability


Who would win in a fight: Apple iPhone or Google Android?


Why Shouldn’t the Blind Drive? | Business Wire | Find Articles at BNET – Virginia Tech Students are working on just that.


YouTube Captioning and Accessible Controls

]]> http://eyeinfo.wordpress.com/2009/11/20/advanced-cell-technology-seeks-to-test-embryonic-stem-cells-to-treat-blindness/ Fri, 20 Nov 2009 16:08:47 +0000 eyeinfo http://eyeinfo.wordpress.com/2009/11/20/advanced-cell-technology-seeks-to-test-embryonic-stem-cells-to-treat-blindness/

AFP (11/19, Oberman) reported that “embryonic stem cell therapy got a step closer to the clinic Thursday after” researchers from Advanced Cell Technology “said they filed a request for” Food and Drug Administration “approval of human trials” involving “a single injection of retinal cells derived from embryonic stem cells” to treat Stargardt’s disease, a common type of “juvenile blindness.” The technique “works by replacing lost” retinal pigment epithelium cells “which maintain the photoreceptors needed for vision,” explained Robert Lanza, MD, the company’s chief scientific officer.

Reuters (11/20, Fox) reports that if the agency approves the application, a human phase I/II trial would take place in 12 patients to prove safety and efficacy.

The UK’s Independent (11/20) reports that Advanced Cell Technology plans “to follow this with an application to treat age-related macular degeneration, which…is the most common cause of blindness.” In animal tests, “transplants of the human cells into rats with macular degeneration resulted in a ‘100 percent improvement’ in vision with no side-effects, Dr. Lanza said.”

The Los Angeles Times (11/19, Kaplan) “Booster Shots” blog reported that Stargardt’s disease “is a childhood version of macular degeneration and affects about one in 10,000 kids. Patients typically begin to lose their central vision between the ages of six and 20,” with “about half of victims” becoming “legally blind by age 50.” In most cases of the disease, which has no cure, “children inherent a faulty version of the ABCA4 gene or the CNGB3 gene from both parents,” which causes “photoreceptor cells in the retina” not to “get enough fuel,” so “they atrophy.” The UK’s Telegraph (11/20, Moore) also covers the story.

]]> http://teachvision.wordpress.com/2009/11/20/the-nightmare-is-over-will-another-begin/ Fri, 20 Nov 2009 13:33:36 +0000 esvi http://teachvision.wordpress.com/2009/11/20/the-nightmare-is-over-will-another-begin/

The school year is finally over, what a relief! We almost didn’t make it through. The school was tough on Sophie. It was almost as if they were tough because of her impairment, not in spite of.

Sophie was literally driven to the edge. I almost lost her. Not getting support from the school is one thing. Having obstacles put in our way, every direction we turn is another. It was subtle, but the effect was devastating.

She was picked on, yelled at, and ridiculed. All because of her disability. She could not complete her work like her peers, she was slower, her handwriting was untidy – this was made known to the school when she first joined, and repeatedly thereafter. Why pick on her now?

Without the necessary accommodation, she cannot perform like her peers, so she scored the lowest in the class for some mock exam paper. Was it necessary to mock her in front of the whole class? Isn’t this an attack on her disability? If she could top the class for that paper, would she still have an impairment? I think not!

We’re glad it’s all over now with that school. She’ll be moving on to secondary school next year, a different school. While we looked forward to the change, it is not without apprehension. What if …? I dare not think.

Why is Sophie being punished for her disability? She didn’t ask for it. Why does she have to suffer more than the impairment itself? It is not as if she has committed some heinous crime.

I feel sorry that the school, and especially, the Principal, could not show a little more empathy to students with disabilities. I am sorry that while they are in a position to influence young minds, they will only impart intolerance.

I have a feeling that this is not quite over for us. Sophie will have to continue to wage the battle against prejudice and discrimination. And I will fight on with her!

]]> http://idbcomm.wordpress.com/2009/11/19/melissa-intro/ Thu, 19 Nov 2009 21:25:53 +0000 idbcomm http://idbcomm.wordpress.com/2009/11/19/melissa-intro/


Orientation Center student Melissa uses her long, white cane to travel down a sidewalk in Des Moines, Iowa.

Hello, my name is Melissa, and I am a new Rehab Teacher at the Iowa Department for the Blind. Once I complete my 4 to 6 months of training I will be travelling Counties of North Central Iowa, teaching the skills necessary for blind individuals to live and remain independent in their homes. I originally grew up on a farm in Northwest Iowa between the small towns of Peterson and Linn Grove, along the Little Sioux River Valley. I graduated from Iowa State University in 2008 with a degree in Kinesiology and Health. Prior to working with the blind, I was the Chronic Disease Self-Management Program Coordinator for Northwest Aging Association in Spencer, IA.

I started working for the Iowa Department for the Blind October 5, 2009 and I have been considered “staff in-training” ever since. As a staff member going through training, I wear sleep shades over my eyes to create a sense of blindness. While in training, I follow a class schedule of Home Ec, Shop, Braille, Computer, and Travel Class. Each class last for an hour-an- a-half, and it is during these classes that I learn the skills necessary to live independently as a blind person. As I sit here and examine the reasons as to why I’m going through all of this intensive training, I have come up with the following:

• It is important to realize and understand that A blind person is just as capable as a sighted person
• I will gain the skills necessary to teach those that are blind how to live independently
• As a blind person, I will face the struggles and obstacles that arise, but will learn to be successful by believing in myself
• I will challenge and empower others to change their negative attitudes about blindness so they can view vision loss in a more positive light. 

 A little about my classes:

I would have to say that Braille is my favorite class. I now know the letters A through Z and all of the numbers. I still have a lot to learn, but it is such an exciting challenge!

In home Ec, my first class of the day, I have learned how to fry eggs, make pancakes, make cinnamon rolls from scratch, cut vegetables, and use the oven (I just made homemade apple crisp!). I will eventually be preparing three- and seven-course meals!

 Another favorite of mine is shop. I just finished making  my picture frame made from scratch (yes, I have used the band saw, radial saw, sander, and more!),and I will be starting a bigger project soon! I plan on making a blanket chest for my living room.

In computer class, I am learning the basics of Microsoft Word. We have computers, but they don’t have a screen or a mouse! I have been learning to navigate my way around a computer using a program called JAWS. Soon, I will be learning how to open up and use e-mail. It’s been tricky learning all of the different keystrokes and shortcuts necessary to use the computer, but I believe I have been pretty successful!

When I first started, I was scared to death of travel class. After a month, I have learned to cross streets, take the bus, and get around by using a white cane. As a blind person, I have really come to know how handy and useful a cane is in getting around. Yes, I’ve run into things, but I’ve learned to laugh it off and keep going!

My time here thus far has been such a great learning experience. Although I’ve been faced with some difficult challenges, I’ve had a lot of fun, and have met many great people.

]]> http://tracysturret.wordpress.com/2009/11/19/i-want-to-adopt-this-little-beauty-so-bad/ Thu, 19 Nov 2009 20:33:24 +0000 Tracy http://tracysturret.wordpress.com/2009/11/19/i-want-to-adopt-this-little-beauty-so-bad/



This is Wendy, a little girl that is waiting for her “forever family” in an orphanage in the Ukraine. I find myself so drawn to her, and wish I were rich so I could just go and get her and bring her home. Wendy has some significant special needs, and faces an institution soon, where she may no longer have the option of being adopted. This breaks my heart. Wendy is listed on this website: Reece’s Rainbow   , in the ‘Other Angels’ category.  This site allows people to view waiting children and to donate toward their individual adoption fund accounts…as overseas adoption runs into alot of expense and holds a lot of potential parents back.   If I came into money somehow, or could figure out a way to bring in a better income, then adopting Wendy or another of these children would be one of the very first things I would seek to do. 

This is what is said about Wendy:

Wendy is a beautiful girl with sandy blonde hair and blue eyes.    She was born quite premature  (not sure which gestational week, but it is listed as “4th stage”).  She has CP and is completely blind, with congenital cataracts in both eyes, optic sub-atrophy, and microcephaly.

Despite all of these odds stacked against her, she is an orphanage favorite and is well loved.  She will really blossom in a loving family, and learning to use her other senses will open up the world around her.
 
Wendy is already 3 1/2 now, and is facing the institution soon.  She needs a family right away!

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I think that Wendy would be such a blessing to have as my own.  I think I’d learn a lot about new ways to view the world….people without sight are so in tune to things that sighted people overlook.   I have learned how to use braille, and find it amazing.  I’d love to help to open up Wendy’s world, and I know she’d open up mine.

If you find it in your heart to do so, please pray for Wendy and all of these little ones, and pass the word about them along to others.  They are all so precious and deserve so much more out of life.

]]> http://paulinege.wordpress.com/2009/11/19/1943/ Thu, 19 Nov 2009 20:10:00 +0000 Pauline http://paulinege.wordpress.com/2009/11/19/1943/

Monday evening, our Webelos den went to the library to work on earning their Communicator pin. After going over how to find books and how to take good care of them, the children’s librarian brought out what looked like a very large photo album. This was a Braille copy of the Bible, she explained, and she gave the boys a chance to feel the pages.

My parents had friends who were blind, so I was familiar with the look and feel of Braille materials from an early age. (Not that I ever learned to read them.) It came as somewhat of a surprise, Monday, to realize that it has been so long since I have seen someone actually using Braille that it was probably something completely new to these fourth grade boys.

The librarian added that no one was using the Braille books anymore, so they had been removed from the library’s holdings. She saved the Braille Bible herself, because it seemed a shame to lose something so wonderful. Today people use recorded books instead, she explained.

When I was growing up, there were recorded books, but they weren’t widely available. When my grandfather had cataract surgery, he had patches over his eyes while he recovered, and we took turns staying with him and helping him out while he was unable to see. To pass the time, he listened to some recorded books, which were loaned out by the organization that made them available to blind people.

They weren’t on CDs of course, or even cassettes – these were LP records. I knew how to use a record player, but I was always nervous about setting down the needle, afraid I would miss and scratch the record. It’s easy to see why most people wouldn’t be interested in audiobooks of that nature, and with demand being low, naturally supply was low also.

Cassettes and portable cassette players changed all that. Instead of having to get volunteers to read books aloud to be recorded, today’s audiobooks are professionally produced, read by people who become known for the quality of their voice characterizations. This makes a much larger range of materials available for blind people – and decreases the motivation to learn Braille.

I started wondering how much Braille is still used. I see Braille on signs for public restrooms – and I always wondered how people who can’t see find the signs to begin with. I found out yesterday, reading through an online discussion of such signs. Most of those who are considered legally blind have some vision – not enough to rely on for many purposes but enough to locate signs on walls.

Unfortunately – according to proponents of Braille – fewer visually impaired people are learning Braille today. Only an estimated 10% can read Braille, while the rest rely on recorded books, devices that convert text to speech, and (if their vision is good enough) magnifying devices that enable them to read printed materials.

A librarian in Tennessee explains the benefits of knowing Braille, even in an age when electronic devices can do so much for the visually impaired.

I always emphasize that you can do many things with braille that are impossible with audio materials, such as label the cans in your kitchen cabinets, or the bottles in your medicine cabinet, learn punctuation and spelling of words, etc.

One article I read explains another reason for the decreasing use of Braille – it has not been encouraged in the public school systems. Once children with special needs were integrated into mainstream schools and classrooms, teaching Braille to blind children became a low priority. Having a special needs child myself, I can’t imagine any of his teachers wanting less for him than the best he can do, but apparently some special ed teachers have had low expectations for the career prospects of blind students.

A blind woman who rented a room in my parents’ home, after my sister went off to college, was employed at the local VA hospital. Unlike another blind friend who worked in a sheltered workshop, where blind people were provided with routine work (packing boxes, I think) and paid very little, Genevieve was a skilled medical transcriptionist. The fact that she had once been sighted no doubt helped, as she had probably already been an excellent typist before the car accident that blinded her. But she was evidence that a totally blind person could function quite capably in a demanding job.

Most blind people who are employed do read and write Braille, according to Chris Danielson of the National Federation of the Blind. I don’t know how much that indicates that knowing Braille helps one get work and succeed on the job, and how much it is because people who are driven to succeed will work to give themselves whatever advantages they can. But it explains why states are passing laws requiring that every blind student be assessed to see if Braille will help them, and to have Braille taught to all those who will benefit.

I tried to imagine how Braille could be useful in the kind of work I do. Certainly one can type without seeing the keyboard (that’s the idea of touch typing – you’re not supposed to look at it), and I’m sure there are printers that produce Braille output, but how in the world could you make a computer monitor with raised bumps?

It turns out there is such a thing as a Braille terminal, but those that are currently available are very expensive. If you work with computers, you’ve probably noticed that the components that break most often are the ones with moving parts (printer, mouse, keyboard, disk drive). Just imagine how many moving parts are required to make all those sets of bumps go up and down. Keyboards and mice used to cost a lot more, but with such widespread use they’ve become throwaway items when they stop working.

Braille devices will never have that large a market. But fortunately enough R&D is being done that a new, simpler device is being developed. A rotating wheel moves the display past the finger, instead of the finger moving over the display. This means that only a single dot grid is required instead of dozens, which will greatly reduce the costs to manufacture these once they are commercially available.

I hope I never lose my sight. I have heard many people say that if they had to choose between sight and hearing, they would choose hearing. I wouldn’t like to lose my hearing (though I do like silence), but I would hate to lose my vision. I’m glad to know, though, of all the possibilities available to me if that should happen. And now I know that I should take good care of my fingers, so that if I ever need to read Braille I’ll be able to.

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