March 2011

This is an entry in the 75th Disability Blog Carnival, and is the first time I’ve done this.

Milestones mark the distances along roads, and date back to the Roman Empire. They tell you how far you’ve come and often how far you’ve got to go. The more metaphorical life milestones don’t often tell us much about the distances between themselves, they’re like the Roman milestones that simply gave the name of the reigning emperor and often hold more significance to us than anyone else.

I was thinking of some milestones before I started writing this, and events that stuck out in my mind were things like walking through Martin Place in Sydney after being told my Optic Nerve was basically dying off, and there’s nothing that can be done. I was with my mother, and I wandered a few meters away as we were making our way to the train station.

This is where it really hit me for the first time, walking past the MLC centre. Naturally enough I saw the whole idea of losing my sight as a sighted person, with the dependence I had on my vision and a lack of understanding of what it really meant. At the age of 20, when life seems like it will go on forever, there was that overwhelming feeling of hopelessness. The tears welled up, and I wanted to scream. But I couldn’t do that there. In the middle of the city. In front of my mother, who had already been through so much with all of her children. I forced it back down.

More recently, having an assessment and totally failing to recognise anything on the eye chart, even from a meter away. Being unable to count fingers on a hand in front of my face. While 14 years had passed between Martin Place and that darkened room in Fairy Meadow, some of that feeling remains. While the fear I felt at 20 has been replaced with skills and confidence, the sense of loss remains.

Losing a significant amount of vision at the point I did, as my brain was reaching the end of its development, I feel that I’ll always be a sighted person who can’t see. Don’t get me wrong, it’s better to have loved and lost. I’ve got concepts in my brain that people who have never seen never have, but the whole blind skills thing still feels like it’s laid over the top, rather than integrated. Maybe this will change as I get older. Maybe I’m being impatient.

But this is all being horribly negative. Some of positives include my first long cane. Some time not to long after Martin Place, I’d gotten in contact with Guide Dogs NSW/ACT, and was assessed as being eligible for a cane. Or should that be needing? I was walking around basically staring at the ground in front of my feet so that I wouldn’t fall over things, and while it worked on that level, it meant I walked into things instead (and I got a very sore neck, since we’re not built to walk around like that).

A friend and I got taken from Armidale to Coffs Harbour and I spent a week learning to use a cane. This was a skill I picked up surprisingly well, and it’s certainly one of those milestones you call life-changing. This is the only time I’ve spent more than half an hour in Coffs Harbour, and is the first new place I’d been after crossing that 6/60 acuity mark. I still think of the city as a series of disjointed paths, parks, beaches, streets and shopping centres, and the whole thing reminds me that I was starting to believe that this whole blind thing wasn’t actually the end of the world.

Similarly, learning Braille was a similar milestone, though not so much for the learning as the things around learning. I still don’t use Braille anywhere near enough to be proficient, but I can get by. While I learned Grade 1 Braille (the basics) at home with some audio and Braille books and my local worker from the then Royal Blind Society, I had to go to Sydney for two weeks and go to the RBS offices at Enfield, which involved learning a reasonably complex route from a friend’s house in Brookvale. But the bigger thing was this was the first time I spent any amount of time with more than one other blind person. This was also the first time I realised that as a resident of a regional city I was missing out on a lot of blind related things, certainly meeting other people was a big thing, but also the Braille classes and the like were only available in Sydney, and left me at something of a disadvantage. While I’ll blame some of this on the state of NSW, which generally forgets that there’s a lot more to it than Sydney, it’s still an ongoing problem for Vision Australia and others.

These are just a few milestones that spring to my mind around my disability. Of course, there’s lots more that everyone experiences: starting jobs, going out with my now wife and getting married. Pregnancy is proving to be its own series of milestones, and I’m certainly looking forward to the next one when the baby finally comes.

On 28th February the Productivity Commission released their draft report into Disability Support and Care. It’s not been a surprise that they’re recommending the creation of a National Disability Insurance Scheme.

Others will go on about this, and I may even present my opinion sometime soon, but what I wanted to explore now is one of the elements of the report, and how this is making me think about my blindness.

In short the proposal includes four categories of people who would be eligible for coverage by the scheme. The people who would be served by the proposed scheme would:

  • have significant limitations in communication, mobility or self-care (3a)
  • have an intellectual disability (3b)
  • be in an early intervention group (3c)
  • have large identifiable benefits from support that would otherwise not be realised (3d)

At first I couldn’t see where I was supposed to fit into the scheme as a blind person. The more I look; I am forced to conclude that they’re including the blind group in 3a because our communication is limited.

Which lead me to wonder why someone would think that my, or any other blind person’s, ability to communicate is limited.

From my University days I can tell you that Communication is the activity of conveying information. Communication requires a sender, a message and a recipient.

So, let’s look at some forms of communication. Verbal communication is clearly usable by anyone who does not have a hearing problem in the ranges of human speech.

Writing is the representation of language in a textual form, while text is a string of coherent symbols that transmits some form of informative message. While the common form of writing is simply done by marking these coherent symbols on a surface with a substance such as paint, ink, pencil or chalk; letters have been represented tactually in a number of ways.

Text can be embossed on surfaces, and be identified by touch, however the size needed to make these letters usable is comparatively large, and is inefficient for more than a few words. For this reason a number of tactile alphabets have been developed, including Night Writing for the French military, Moon type, New York Point and the most famous: Braille. (See Wikipedia)

Braille is a proven system, and while its falling into some disuse in some areas, it is still important for people to learn. There is a debate around teaching children Braille, while much is available in audio form, or in text form that can be read via computer, learning the alphabet in this way is something many people are passionate about.

The issue with Braille is its use in everyday society. While new buildings are required to include Braille signage, these are so few and far between, you’re unlikely to be running your hands over walls on the off chance you’ll find something readable.

On the topic of body language, Wikipedia cites John Borg in his book Body Language: 7 Easy Lessons to Master the Silent Language, asserting that human communication consists of 93% body language and paralinguistic cues. This leaves only 7% of communication as verbal. So what does this mean for someone who can’t see?

If we hold Borg’s assertion to be true, then it means the blind are missing out on 93% of communication.

Wikipedia contains an entry about eye contact, and while it lacks citation, most of what it contains would appear to be correct. It states:

“Eye contact and facial expressions provide important social and emotional information. People, perhaps without consciously doing so, probe each other’s eyes and faces for positive or negative mood signs. In some contexts, the meeting of eyes arouses strong emotions.” (Wikipedia)

So what happens when you can’t make eye contact? In western society, where eye contact is generally encouraged, not making eye contact can lead to the impression that you’re not paying attention, or that your attention is elsewhere.

Millions of people around the world large amounts of time communicating via the telephone, the internet and via the written word without major problems, so while 93% of communication might be non-verbal, it would seem its not strictly necessary for us to communicate as human beings.

So, as a blind person, is my communication limited. On considering the above points, is this actually a big problem, or just one facet of being blind?

With Braille, the written word was opened up to the blind, however the production of Braille books is comparatively more expensive, and the volumes are considerably larger. With the development of screenreaders, the computer has opened up written works much further, but still within a limited range.

Proprietary formats, the presentation of text as images and poor formatting are still major barriers to a blind person accessing printed materials, even when they’re available in electronic formats. However it’s been claimed that only a small percentage of printed material is available to someone who is blind or has another print disability.

Even with the explosion in ebooks, there have still been major access issues. Amazon Kindle has only recently been updated so that a screen reader user can access kindle books. None of the handheld ebook readers yet include a screen reader for people with a print disability. Issues such as copyright and the desire of some to protect property continue to limit innovation and universal access.

So, that’s me as a receiver. As sender, how is my communication limited? While I can write, I have no reference to do so in an ordered fashion on a straight line. Certainly I can type, and I’ve no problem speaking. As a sender, I’d suggest that my limitations are very small.

So, yes, Productivity Commission, my Communication is limited, but I’ll submit to you that this is not the main problem for the Visually Impaired.

I’m happy to admit that It could be that I only hold this opinion because I became blind at 20, and so the way I think about the world is coloured by the fact I used to be able to see. It might well be that other blind people might wholeheartedly disagree with this point of view.

The thing I find most difficult about being blind is actually my location, my location relative to everything else, and my own ability to navigate and avoid obstacles. This can be on a large scale in the world outside, or it could be in small spaces such as the kitchen at work. Just to re-emphasise the point of my previous post, I don’t feel incompetent or unsafe, but the environment and the people in it are what worries me. It limits my desire to go new places and try new things, this is my challenge, and one I’m working on.

So, at the end of the day, does any of this matter? I think that the way the population thinks about us as people with disabilities is important. Someone mentioned recently that their top five fears included paralysis and going blind, while Nic Steenhout recently blogged about these kinds of perceptions compared to how the disabled viewed themselves (the context is around physician assisted suicide). We all know we’re quite capable in most respects, beyond the confines of our individual impairments, but we’re still educating everybody else.

Can we regard the Productivity Commission as reasonable representatives of those in politics, on the Business Council of Australia or of society more generally? While I can appreciate the need for them to define the scope of who they intend to serve with their proposed scheme, the way in which they chose to identify the groups, seems to me, to be re-enforcing the negatives and perpetuating stereotypes.

As a user of a long cane, there are many things that the general population do that really annoy me.

If you see me, or any other blind person out and about (whether using a cane or a dog) there are right ways and wrong ways of offering help.  Guide Dogs NSW/ACT has made a nice little guide as part of their Don’t Turn a Blind Eye campaign.

It’s also worth mentioning that I’ve done many hours of work with Orientation and Mobility Instructors from Guide Dogs to familiarise myself with places I regularly go, and to learn the skills I need to go anywhere safely.  In addition, after over fourteen years of cane use  I hope that I have a good idea of what I’m doing.

So here, in general terms, I present my five pet hates:

5. The ones who think I’m faking it
This is less common the less I see. But even so, this group represent a particular section of ignorance. These people seem to think that you can either see perfectly, or not at all and so accuse you of “faking it” when something really big and obvious happens and you react. There is a small group, often shop owners who insist on placing displays and signage along the shoreline, who seem to think you’re “faking it” in order to cause them some great inconvenience by falling over their items and injuring yourself and complaining about it. (A shoreline is a clear path of travel which is easily followed using a cane, usually the side of a building. The Australian Human Rights Commission has some great resources around access to premisis and footpaths).

4. The One’s Who Don’t Think They’re Doing Anything Wrong
Like the dazed, these people seem totally oblivious to what’s going on. However, they’re actually not. They seem to feel that they can stand wherever they like and not move, and seem to expect you to know where they are and to move around them. They’re often offended by cane taps to the shoes or ankles.

3. The Dazed
The Dazed are responsible for breaking more canes than any other group of people, including my own foolishness. The dazed often gather in busy public spaces, and then wander around paying no attention to what is going on around them. They will often walk full into a blind person, as they seem to expect everyone else to do the seeing for them, and to dodge them. The secondary type of the dazed are the rushers. These guys also don’t watch where they’re going, but they do it at a rapid pace. There impacts with me and the twisting around my canes have caused several breakages.

2. The Talkers
This one doesn’t happen too often, though it really does top my list as a pet hate. There are occasionally people who will give a running commentary about where you are and what’s around, but not in any way that’s actually helpful. Things like “we’re coming to the top of the escalator” are generally obvious; “keep coming, you’re almost across the street” seems to indicate they think I’ve never crossed a street before; but the most common one is “you’re going to hit that object”, but gives no indication as to where object actually is. At the end of the day, the cane is providing lots of information, and often I’m actually looking for walls, polls and the like because they’re actually landmarks. Landmarks I can’t see, so I need to touch them to get my bearings.

1. The Grabbers
Grabbers are the most downright scary and potentially dangerous group. I’m talking about people who (a) think I don’t know what I’m doing, or think I’m doing it wrong; and (b) without saying a thing will simply grab me, usually by the arm, and attempt to drag me somewhere. So think of being in a crowded dark space, and having someone grab you from behind. What’s your immediate reaction? To be scared? To want to punch the person who’s grabbing you? This is exactly how I feel about grabbers. In addition, being suddenly pulled in one direction or the other can upset your balance. Now think of that on the edge of a train station platform. A slight variation on the theme are those who grab the cane. The cane functions as an extention of the hand, and its held in a fairly precise way to function effectivly, so grabbing the cane is probably worse than grabbing the arm. I once compared cane grabbing to poking someone in the eye.

The blind and visually impared aren’t just given a cane or a dog and sent on their way, since the recognition of the white cane as a mobility aide after Wold War II, many hours have been spent refining techniques, and teaching us how to get about safely. As this information from Guide Dogs NSW/ACT says, if you see someone with a visual impairment about, and you think they might need help, ask first.