With complete acknowledgement of Scott Rains and his excellent Rolling Rains Report, here’s a little something for April Fool’s Day. Of course, it’s not a joke – it’s tragically true.
This week, my wife and I were interviewed by Ellen Fanning from The Global Mail (theglobalmail.org) on the topic of the much-vaunted National Disability Insurance Scheme (NDIS). I’m no expert on the topic so my comments were based simply on my experiences as a person with a physical disability, and the parent of a child with autism. The full transcript of my answers is reproduced below.
[EF] What’s wrong with the current system – the way in which it operates from scarcity and in response to crisis rather than in a planned way?
[PB] Perhaps a better question is ‘what’s right with the current system’! It’s grossly underfunded, slow to react to need and unbelievably bureaucratic. The amount of time to fill in forms is mind-boggling. On one respite application alone, for our son, we spent at least 10 hours of solid work. Carers are notoriously time poor, but still we are expected to fill in these incredible forms, asking all sorts of detail about your personal lives, and if you dare be positive about anything, you will miss out on funding. For people who just want to get on with their lives, but need some support, it’s cruel and unusual punishment.
Every provider also asks for different information so you can’t use a database of answers. They even vary the forms from year to year!
The costs of disability are very significant. In the 10 years since I developed my condition, we have spent perhaps $100,000 on mobility aids, home and vehicle modifications. That’s not even including medical expenses or therapy, only some of which are covered by Medicare and private health insurance. For our son, we spend around $10,000 pa on therapy. Almost none of those costs are currently met by government. That’s the scope of the challenge for the NDIS.
[EF] Examples of how this happens and the result for the person with a disability and their family.
[PB] Last year, my wife had to go away for a few days. I don’t need a lot of help, but there are a few things I just can’t do myself – such as put shoes and socks on. I needed a helper for perhaps 10 minutes a day, for 4 days. As it’s hard for me to communicate instructions to the worker, I wanted the same person each day, not 4 different workers who needed new instructions each day. Apparently this type of help is unusual – most folks either need no help or regular ongoing help. Because it was unusual, Ruth had to make 8 phone calls before it was approved, handed to a provider, then a worker was allocated. It was just incredibly hard. Too hard.
There was no capacity for me to arrange it myself by email, for example.
Because my condition is a variation of Motor Neurone Disease, I joined the MND Society a couple of years ago. They offer some excellent services and support for members, including an equipment loan facility. This means you can borrow equipment you need, at no cost. I wanted to consider borrowing an manual lifter, which would have been useful in a variety of situations. However, because the prognosis for many people living with MND is relatively poor (3-5 years) and mine is relatively good (PLS is considered ‘lifestyle’ threatening, not life threatening) the society doesn’t have the funding to assist me. I will simply live too long to be a good prospect of returning the equipment!
[EF] What you would hope for out of an improved system? What characteristics would it have? How would having a better system in place change life experiences for folks with a disability and their families?
[PB] There’s been a lot of discussion about funding, and clearly that’s important. I think the estimate provided by the Productivity Commission was that funding needs to treble. I suspect that’s an underestimate. But also a big part of whether the NDIS is worth a candle is about bureaucracy and implementation. How can it avoid the brutal duplication and wastage that occurs now? How can it avoid making such demands on carers and people with disabilities, who it seeks to help? How can it change from being negative to positive?
There needs to be no difference between states. For example, when you need to modify a vehicle in NSW to accommodate a wheelchair, you get no assistance. The cost of modification is $25-30,000. In Victoria, you get $10,000. But NSW has a very good system of subsidised taxi transport.
There needs to be no difference between conditions. Currently, if you have an easily-diagnosed condition, that fits nicely into a well-funded and active society or organisation, you may get relatively good support. If you have a rare condition, or worse, you are undiagnosed, you are largely on your own. Support should be on the basis of needs, not diagnosis.
A new system needs to be as simple as Medicare, but spread over a huge range of very high cost services and products. My powered wheelchair cost $15,000, and now needs about $4,000 of custom seating adjustments. (That’s on top of two $5,000 manual wheelchairs.) And $15,000 is pretty cheap for a powerchair. The one I wanted, but couldn’t afford, was $26,000. I can’t see any government spending even $15,000 on a wheelchair without pretty massive bureaucracy. At the point I found myself needing a powerchair, I needed it soon. If I’d had to wait three years (or even one year) I’d have been unable to work during that time and would have lost touch with the workforce. It’s not uncommon to wait three years for funding under the current system.
A new system should not be means-tested, or at least with very generous limits. Many people with disabilities can’t work, or can’t find work. Those who can should not be discouraged from doing so by eligibility rules for support. The costs of disability are real and additional, whether you are rich or poor.
You can read the full Productivity Commission report here – http://www.pc.gov.au/projects/inquiry/disability-support/report
This week has two very close contenders. Before the photos, a short introduction to each.
Photo 1 was taken on level 8 of Royal Prince Alfred Hospital. Level 8 houses the neurology wards. That’s right, most of the hospital’s mobility cases pass through this ward. In case you can’t read the date on the ‘out of order’ sign, it says 31/7/11. I know there’s a shortage of plumbers in Sydney, but two months to fix a loo seems a bit ridiculous.
Photo 2 was taken on my way to the train this morning. Homebush Rd is pretty busy, with cars coming quickly around from The Crescent posing a risk to anyone who isn’t fleet of foot. Which is why the council provides a refuge island half way across. I use it often, as do many parents with strollers. So which bright spark garbologist decided to leave two bins blocking the gutter ramp? With this ramp blocked, pedestrians have little choice but to cross further up, where there’s no refuge island.
This article was published in a different form in Wednesday’s Heckler column in The Sydney Morning Herald. You can link to it here.
I have some sympathy for Gerard Depardieu. You know, sometimes when you’ve gotta go, you’ve really gotta go. Doubly so when your use of a wheelchair severely limits the number of public toilet options available to you.
Last Friday I was in the QVB and an excess of caffeine did what it does. For some inexplicable reason, the disabled toilets in the QVB are on the 1st floor and the lower ground floor, accessible only by a very slow and often crowded lift. After taking the lift to the 1st floor, I found the accessible toilet locked. And it wasn’t locked by an MLAK — the Master Locksmiths Access Key system that provides people with disabilities 24/7 access via a common key. It was locked by security. I couldn’t find security so I asked a cleaner who promised to find security. After 15 minutes waiting I gave up.
Next stop was the HSBC Building, across George Street. But there was a large sign on the door of the accessible toilet ‘Door locked — see security’. Again, no sign of an MLAK lock, and no sign of security. After a search of the floor revealed no security office, I decided that as I was now very close to Town Hall station, that was a better option.
As soon as I entered the station, there was a sign that looked promising. It lead me around several corners and finally to the base of a large set of stairs — the sign pointing straight up the stairs to the HSBC Building I had just visited.
At that moment, in Friday afternoon peak hour at Town Hall Station, with no accessible toilet anywhere to be seen, the aisle of an Air France plane seemed a pretty private place for a pee.
Finally my search of the station revealed another toilet but my heart missed a beat as I saw another sign on the door. ‘Toilets only accessible with MLAK key.’ Bless CityRail. They can do no wrong by me. Trains can run late, platforms can be crowded, the Waratah trains can never be delivered — but I’ll be the last man standing (ok, sitting) and defending them.
The MLAK system is simplicity itself. It ensures those who need access get it and those who don’t are excluded.
What is it about building managers that causes them to ignore a widely accepted method of access control in favour of a solution that suits no-one? When will they get that accessible isn’t accessible if you can’t get in the door?
All I know is that unless they get it soon, they may find themselves mopping up, in the words of Gerard Depardieu, a lot more oui oui.
If you enjoy chocolate and good coffee, this is a must-visit. It is located at Shop 10, Opera Quays, so the view, as you’d expect, is wonderful. You can sit indoors or outside. With a group, I’ve always preferred outside, but there’s good circulation space inside too and a number of smaller tables if you’re sitting alone. The entry, like most shops in the Opera Quays, is flat.
While the primary food served is sweet, especially chocolate, you can also have a light meal including salads, ciabatta and savory pastries. They serve an incredible Dark Chocolate Milkshake ($9) which is truly to die for. The coffee is good too, mild, but very drinkable, and the cappuccino is served at the right temperature. And the sprinkle of Guylian Chocolate on top certainly helps.
The accessible bathroom is excellent, with good circulation space and sufficient room under the sink to really get under. Everything is easy to reach, the door locks simply and there’s even pleasant music piped in. Circular Quay and the Opera House precinct is really lacking accessible bathroom facilities. For the price of a coffee or great milkshake, this cafe offers an excellent addition.
It’s highly recommended.
Twice in the last week I’ve pressed the ‘open door’ button on disabled toilets to reveal a seemingly able-bodied person sitting on the loo — in one case reading a newspaper. It’s bad enough to use the disabled toilet when you don’t need it. But the least you can do is lock the door!
I think I know what has happened. The locks on some modern shopping centre toilets are time limited. If you don’t unlock it within 10 minutes, it unlocks itself. One centre even had to put up a sign to remind people (see picture above).
So the folks I’ve rolled in on have committed multiple sins — using a toilet to which they are not entitled, not keeping the door locked, and being bloody slow! Wise up folks.
After these two occasions I’m now going to have my phone at the ready when I press the open door button. The next person I catch is getting posted on this blog.
What is it about little dogs? Why do they have to prove their masculinity by yapping? Ok, I’ll admit, I’m the owner of a big dog — a Golden Retriever — so I do view little dogs as something of a waste of time. She’s far from obedience personified. She has a particular dislike of possums. If one simply dares walk along our fence line, she nearly knocks the fence down in her attempt to get it. But possums are smarter than dogs. They think it’s a great joke to sit in a tree, just out of her reach, and watch her go crazy. They are the Road Runner to her Wily Coyote. I hope she never discovers ACME on eBay.
But I’m digressing. Despite Bloss’s imperfections, she’s mostly even tempered. She’s a ‘doggy’ dog. She loves other dogs. She’s not neurotic.
We often run across small dogs on our daily walks. Almost invariably they go berserk. I’ve seen one tiny white dog, sensibly locked indoors by its owner, tear a curtain down with frenetic paddling on the glass door. I’ve seen tiny dogs, no bigger or more attractive than large rats, bite their owners as they pick them up as we pass.
And for what?
When Bloss meets another dog on the street, she has a sniff, sometimes touches noses, and, satisfied with the introduction, moves on. Walking is more fun than schmoozing.
A few months ago, on the way home from Sydney Olympic Park, I decided to go via small off-leash area and let Bloss have a free run. As soon as we arrived, a woman arrived with her small dog and let it off. Immediately upon being released, the small dog went crazy. It went in and out of Bloss’s legs, trying to bite her as it went. It was barking constantly, with each bark running together into a high pitched squeal.
Its frantic owner, clearly appalled by her dog’s behavior, was trying to pick it up, but she couldn’t catch it. I decided the only way to resolve the fracas was to speed off, with Bloss still attached, and drag her out of there. I hit the power lever and took off. At just that moment, the small dog ran directly in front of my chair and went straight under me. I felt a small bump. The look on the owner’s face had to be seen to be imagined.
At this point, I should admit family form on such behavior. My paternal grandfather, a man of very few words, was walking home from a day’s work 70 years ago and was confronted by a neighbor’s small dog, yapping around his legs and jumping up on him. He was carrying a shovel and gave the dog a quick swipe with the shovel to get it away from him. The dog gave a quick yelp and fell over, clearly dead.
I can only imagine Granddad’s pain, who enjoyed chatting to neighbors as much a dose of castor oil, arriving at his neighbor’s door and trying to explain what had happened. ‘Your dog was barking at me and trying to bite me, Mavis.’ ‘Oh, he’s a naughty little fellow. Where is he and I’ll give him a good talking to?’
All these memories washed over me as I looked at the owner. The blood had drained from her face and she looked very ill. If looks could kill, my headstone would be forever inscribed ‘Those Barrys – They Kill Small Dogs’.
Suddenly, there was a muffled yap, and a small dog emerged out the back of my scooter. It was still barking.
I decided the best place for me to be was somewhere else. So Bloss and I zoomed off and never looked back.
Picture this: it’s a rainy Saturday afternoon at Leichhardt Aquatic Centre. The Tigers are playing the Warriors at Leichhardt Oval next door, so parking – often a challenge in Leichhardt – is at a premium. A chap who has been at the pool with his kids returns to his neat European car, parked without a permit in a disabled space, and finds 2 parking officers booking the car beside his, which is also parked illegally. At this point, most people would count their blessings at returning in the nick of time, look embarrassed and get out of there as quick as possible. But not this fellow.
‘That’s really rough’ he says to one parking officer. ‘We haven’t booked you’ she replies. He continues that they are still way out of line, because ‘there’s absolutely nowhere to park here when the football is on’. He’s aggrieved on behalf of the person parked beside him! He gesticulates in the direction of the general car park ‘why don’t you do something about them?’. (I’m not sure what a parking officer is supposed to do about 500 cars parked completely legally.) His complaints increase in heat as he gets into his car. He then winds down his window and shouts abuse at the parking officers as he drives away.
Disabled parking spaces exist for a reason. Many people with a disability cannot park elsewhere. Normal parking spaces may be too far away, or too narrow to unload a wheelchair, or without gutter ramps, or the ground too rough to traverse. Able-bodied folks face no such issues. There were parking spaces near the Aquatic Centre that day; they were just further down the hill, necessitating a walk back up the hill in the rain. That’s a pest for a person who walks, but an impossibility for many who don’t.
Sitting in my wheelchair, watching this nasty event unfold, I wondered what this fellow’s kids took away from the encounter. Did they learn to respect authority and uphold the law? To control their anger in public? To appreciate the needs of others? Perhaps to put things in perspective? In a city where a good parking spot can move some people to tears, I’d like to hope their dad later reflected on his tirade and told them it was an example of how not to behave. But, somehow, I doubt it.
They say familiarity breeds contempt, but in this case it bred considerable admiration. Admiration for a true case where making a facility accessible is in no way at the cost of the general user.
Courtesy of an annual pass gift to my daughter, I’ve spent 38 hours entertaining myself at Luna Park this summer. Rather than having one of those crazy and out-of-control Luna Park parties where large groups of kids run in all directions, she attended with a different friend each day.
Anyone can enter and leave LP at will; you only need a pass to go on rides. For me, that meant I was free to cruise the park and explore while the kids rode, so long as I kept all the bags, hats and surplus clothes and had meet points prearranged.
There are bars and cafes spread throughout Luna Park. Some of these are outdoors with umbrellas for shade; others are indoors with full facilities. Of these, my favourite was The Deck. It’s a very pleasant bar and cafe, with large open windows looking over a full panorama from Balmain to Wooloomooloo. You can buy coffee, a beer, wine by the glass or even a cocktail and sit by the windows and enjoy the breeze. Or just watch the ferries come and go. There is music, but it’s mostly just in the background; it’s genuine respite from the sights and sounds of the park outside. The Deck is air conditioned, but on the days I was there, it wasn’t needed. Being right beside the harbor makes a huge difference in temperature — even on very hot days. The accessible toilet has a sliding door, which is easy to use. As usual though, I couldn’t get it locked.
Another bar/cafe is The Big Top, which is also air conditioned. But with constant background of Top 40 video hits. For an hour or two that wasn’t so bad. I now consider myself an expert on 2010 pop songs, just as we start 2011. It also has a good accessible bathroom.
There are also accessible toilets at either end of the main concourse. As these are part of regular male and female toilet facilities, they won’t suit everyone. Never fear, both The Deck and The Big Top have their own standalone accessible toilets. The Deck has a manual sliding door and The Big Top is outward opening. Both have their own basins.
Getting to Luna Park is simple. The Milson’s Point ferry stops right at the entrance, so you can take a ferry or rivercat from any waterside locatIon. The ferry and wharf is accessible. Trains to Milson’s Point are numerous, and the station is accessible. There’s also plenty of parking.
The space at Luna Park is large, for such an inner city location; such that it really doesn’t feel too crowded, even in peak season.
The ‘street’ entertainers are pretty good. There are 1950s retro dancing girls, fun patrol surf boys doing the same and all manner of trumpeters, brass bands, stilt-walkers, clowns and more. After a few hours the non-stop energy got too much for me; they go all day and I was amazed at their stamina.
I was under strict instructions not to take any rides during my visits — I was purely an observer. However, the use of rides by guests with disabilities isn’t ignored at Luna Park. Every ride has a ‘fun and safety guide’ on a board at its entrance. This states warnings about health conditions to be aware of, whether guests in wheelchairs need to transfer and whether there is room for an assistance dog on the ride. It’s the best information I’ve seen of its type and saves any difficult questions prior to riding. It’s a model all theme parks should adopt.
For visitors to Sydney with kids, Luna Park should be on the must-see list. For locals, if you haven’t been recently, take another look at this incredible resource. For wheelies, it’s very well thought out and highly accessible. For parents of all sorts, it’s far from a hardship posting.
I very rarely feel envy, but today I heard a story on radio that made me green. Stewart MacLennan and his wife Lesley, are traveling on a purpose-built, wheelchair-accessible 36 tonne barge, cruising the rivers of Europe. Stewart and Lesley have an excellent web page and regular blog, so I’ll let them tell their story themselves.
Here’s an interesting article from today’s SMH Online edition. I’ve grabbed it from the App Store and will add some locations to see how it works. It currently tells me I can get accessible drinking water from a place 353m from my house. Like all wikis, it’s only as good as the users!
German iPhone app guides handicapped around cities
February 22, 2011 – 9:50PM
Raul Krauthausen, who has used a wheelchair since childhood, has always been uncomfortable with the services Germany provides for the physically handicapped, like special taxis and grocery delivery _ saying they feel patronizing and further isolate him from the able-bodied world.
So Krauthausen took matters into his own hands and launched wheelmap.org, an iPhone application and website in German and English that allows users to share ratings and tips on how accessible shops, bars and other places are.
“Sometimes I feel I’m treated like a child who isn’t allowed to decide specific things by myself,” said the 30-year-old who suffers from a genetic disorder that makes his bones brittle. “I want to remain flexible and not be dependent on when a driving service has time to pick me up.”
It turned out he wasn’t the only one who felt that way. With some 300 new user-ratings daily, wheelmap.org now has details on 30,000 locations. Around 80 percent of tagged spots are in Germany, but site ratings for cities like London and New York are slowly growing, Krauthausen said.
“Wheelmap.org wants to help show people with mobility impairments everything that’s achievable,” he said.
Krauthausen attributes Wheelmap’s success to its availability as an iPhone application and the “Wiki principle” _ the idea that anyone, anywhere can contribute. Users rate locations without registering, but must log in to add specific comments.
Ingo Stoecker, a regular user and beta tester for the app, said he hopes the site will encourage often reclusive handicapped urbanites to explore surroundings they see as potentially perilous to navigate. Some 4.5 million of Germany’s 82 million people are physically handicapped.
“Most or many wheelchair users are rather introverted _ they’d rather not go out,” said Stoecker, who suffers from a birth defect resulting in incomplete spinal development.
“I think if they knew of such an app, they would maybe get out more.”
Stoecker, 30, can navigate very short distances on crutches and drive a special car. He uses Wheelmap to find bars or cinemas for weekend nights in Berlin or traveling outside the city with friends from his wheelchair basketball team.
“It’s helpful when our team is on the road to unknown cities where we have games,” he said on a recent day, using the app to pick out a not-yet rated sandwich shop in Berlin’s Alexanderplatz. “We can see how to get around and what there is to do.”
On the iPhone app, locations are tagged as either green, yellow or red _ totally, partially and not at all accessible. Unrated locations are gray.
Stoecker rated the sandwich shop yellow. It had a curb about four inches (10 cm) high _ low enough for him but prohibitive for more disabled urbanites.
While many large cities from San Diego to Vienna offer guidebooks for handicapped visitors, Anette Stein, an education researcher at the Bertelsmann Foundation think tank, and other experts said they were unaware of any other application that allowed users to add instant comment.
“I find the Wheelmap project highly exciting and can well imagine that it could spread through social networks and consequently see enormous growth,” Stein said.
Beyond helping the handicapped, Krauthausen said he hopes Wheelmap will persuade more business owners to make their stores barrier-free, something Germany legally requires, but in reality is often not implemented.
“Often it’s simply a matter of one or two steps preventing you from getting in. For that, there’s a cheap solution,” he said.
Stein said change will come if businesses see themselves losing customers or developing reputations as handicapped-unfriendly.
“Wheelmap generates a type of pressure on proprietors and establishments and will arguably cultivate an interest for them not to be shown as gray or red, but as green” Stein said.
To finance wheelmap.org, Krauthausen has relied on both private donations and a governmental stipend.
Though he welcomes the public funds, he worries the government might be trying to “buy its way out” of the problem of making handicapped Germans more independent.
“The whole reason there are organizations like ours is because the government has failed to do anything themselves,” he said.
Krauthausen and Stein both pointed to a 2007 United Nations study rating Germany as one of the worst industrialized nations for handicapped accessibility.
The Labor Ministry said things are improving, and that the U.N. study has been a catalyst for improving federal initiatives to aid the disabled; the Cabinet is expected to pass an action plan, written with a focus group of handicapped Germans, in March.
If you enjoy chocolate and good coffee, this place is a must-visit. It is located at Shop 10, Opera Quays, so the view, as you’d expect, is wonderful. You can sit indoors or outside. With a group, I’ve always preferred outside, but there’s good circulation space inside too and a number of smaller tables if you’re sitting alone.
While the primary foods served are sweet — chocolate, cakes and desserts — you can also have a light meal, a beer, glass of wine or champagne. They also serve a full breakfast. The incredible Dark Chocolate Milkshake ($9) is truly to die for.
Access is no issue inside or out. Everything is flat, and there is an excellent accessible toilet inside (no key required), just to the left of the main service area. Given the dearth of accessible toilets around Circular Quay and the Opera House, this one is worth remembering.
Given the location, it’s no surprise that nothing comes cheap in this cafe. However, it’s a special place to take visitors to Sydney, before or after a show at The Opera House, or if you just feel like some decadence with your coffee.
As a person who can’t speak, I use many other strategies to communicate. Mostly, this involves technology. I love technology, and my lack of voice has given me an excuse to try everything I can get my hands on over the last few years. I’ve been meaning to write up a summary for ages. So here it is…
The tool I use most is just the word processing package Pages on the iPad. While obviously it’s not designed as any sort of therapeutic tool, it works so well I now use it every day. In most scenarios, I just show the person I’m speaking to the text I’ve typed. In large groups, or in meetings, I usually nominate someone as my ‘reader’ and hand the device to them when I want to make a contribution. (Though it’s worth saying, the job of reader has some skill attached. Some people insist on ‘interpreting’ what I type. And it’s a rare reader who can pick up the emphasis I want — no matter how much italics, bold or how many asterisks I use.) Previously I used Word on the laptop in the same way.
The choice between devices is interesting. Personally, I’m preferring the iPad to any other device I’ve used, though others had advantages too. My laptop was good when I used Word 2003, because I could choose to either show the text, or Word had a text-to-speech function so you could just press play and it would say it. That was a very nice option to have, and the iPad has no such function. (Though Word 2007 dropped that function. Go figure.) There was also an Australian accented voice for the notebook, whereas with the iPad you can only choose US or British accents so far. The beauty of the iPad is that you can operate it entirely with one finger. There’s no mouse to master, there are no combination keys to press and best of all, it is ‘instant on’ (that is, you just press the home button and it is on. No slow start up). The iPad is also easy to pass around and of course the battery lasts all day.
There are a number of tools that actually speak the words for you and they break down into two groups – text-to-speech (where you type in the exact words to say) and symbol-based tools (where you use pre-set symbols to make up sentences, or define your own commonly-used phrases). Personally, I’ve always preferred the text-to-speech tools because they allow more nuanced conversation. Symbol-based tools are quite good for making requests, but less so for conversations. On a laptop, the best of the text-to-speech tools are TextAloud and NextUp Talker (more sophisticated). Both are available with an incredible range of natural voices, including the Australian accent I mentioned above, which is called Lee. All are Windows only. For the Mac, the best I’ve seen is called GhostReader.
For the iPad, there are quite limited text-to-speech options. There is an expensive app called EZSpeechPro ($229), but the main one I use is called Speak it! Both have only American and/or British voices. The best of the symbol-based tools I’ve found for the iPad is called Auto Verbal. Again, it only has an American accent but it’s simple, cheap and useable. You can also save phrases you regularly use and they are available with a single tap. There are some very expensive and sophisticated symbol-based packages for both the iPad and laptop (an example is Proloquo2Go – $239) but, to me, they don’t offer more than the combination of a simple tool and a word processor.
I’ve also found that text-to-speech works well in some situations and less well in others. In formal meetings and presentations, and especially on conference calls and phone calls, I find text-to-speech a great tool. For example, when I need to speak to a bank on the phone, they won’t accept someone speaking for you. But they will accept text-to-speech. The thing is, you need to plan in advance or least warn the listener they will need to wait while you type your answer. Text-to-speech tools read exactly what you type, so if you make typos, that’s what they read. Whereas when I’m just showing the words I’ve typed I can type away flat out and just let the typos go uncorrected.
My feeling is that, on balance, the iPad currently offers the best range of functions for a user. For anyone with limited hand functions, especially, it is just so simple to use. Because most apps are so cheap, you can afford to get a number of the different text-to-speech and symbol-based apps and just try them out. Whereas on the laptop that would cost several hundred dollars.
It’s amazing how often people talk as if I’m not there. It happened yesterday, when I was in my local cafe.
My powerchair has a large pouch on one arm. It’s my multi-purpose receptacle. As I go about my daily business, everything goes in there. Train tickets, credit cards, receipts, change, plastic bags, several phones, tools and assorted extras. My wife’s handbag has nothing on my pouch! On this day, sitting in the cafe alone, I decided to tidy my pouch.
At a table directly across from me sat a group; a family with mum, dad and two young kids. One child was a toddler, intent on exploring his world and keeping his parents very busy. In a pram was a tiny baby, perhaps only a month old. I remember that life stage. It’s not easy. The dad, in particular, was run ragged. After a short time they were joined by the mum’s parents. She was Malaysian and spoke with almost no accent. Her partner was a New Zealander. They were discussing where they should settle. The dad was concerned that, if they stayed in Australia, he would be stuck in a sales role his whole life. His partner was informing him that he had responsibilities and couldn’t simply choose what he wanted. ‘You New Zealander’s have no work ethic’ she chastised him. Her parents seemed to have more limited English but every now and then they nodded in agreement with their daughter’s points.
I have to admit, I felt sorry for the bloke. He was chasing his toddler all over the cafe, and each time he returned to grab a sip of his coffee or a bite of his toasted sandwich, the topic had moved on to another of his weaknesses. Occasionally he would offer a word of disagreement, but then his toddler would dash, he would follow, and his wife would continue on topic. So mostly it was his wife talking, and her parents nodding. But I could tell he wasn’t happy. He looked increasingly hurt, and embarrassed as the minutes passed and the topic didn’t change. I was only a metre or two away; I could hear every word.
All the time this was going on, I was unloading my pouch contents onto the table and slowly consuming my coffee. There was a lot of change. I had it piled up in denominations on the table in front of me. It’s amazing how fast $1 and $2 coins add up. It was time well spent. The group beside me had now finished. As they packed up, I heard the dad comment to the others ‘I guess we don’t have it so bad. We’re luckier than that guy trying to scrape together enough coins to pay for his coffee.’ On that, they all agreed.
MLAK is a great system. It stands for Master Locksmith’s Access Key, and it is a (near) universal system for gaining 24/7 access to disabled toilets in public facilities around Australia. To get an MLAK, you simply visit your local locksmith, show your disability parking permit, or a letter from a doctor or other service provider, and they issue the key. Mine cost $12, but I’m not sure if that’s a standard cost. In return, you get access to clean, well serviced, accessible bathrooms in any location where the facility has chosen to fit an MLAK lock. The lock, of course, keeps those who don’t need accessible facilities out. There’s rarely a queue for MLAK fitted toilets.
For whatever reason, CityRail in Sydney has chosen to mostly not use MLAK. They fit a different lock, with a sign above it saying ‘to use toilets, see station staff’. I recently wanted to use the bathroom at Circular Quay Station, so I first tried my MLAK, and after finding it didn’t work, sought out the station staff. The staff member at the exit gate looked at me blankly, then picked up her radio and called another staff member. Five minutes later, a staff member arrived with a key on a big wooden keyring, and instructed me to follow them. They let me in, and then waited outside to ensure the door was locked on my exit.
What a completely idiotic system! Just in terms of wasted staff time and cost, it is bad enough; to say nothing of the indignity of a person in a wheelchair having to ask to use a toilet when no other patron needs to.
CityRail has signs around stations at the moment, trumpeting their success in meeting certain benchmarks they have set themselves. One of these benchmarks is ‘better facilities for disabled passengers’. Their measure of success is that they have fitted MLAK locks on twelve existing accessible toilets at train stations (though they don’t say where). I’ve seen one — on Platform 5 at Strathfield Station (though the main accessible toilet on the ground floor remains locked with a ‘see staff’ sign).
I don’t know how much it costs CityRail to fit an MLAK lock, but my office fitted one and it was $50, plus 40 minutes labour. It seems to me that twelve MLAK locks is a pretty paltry effort. In the lead up to the NSW election, how about one of the parties do something really radical, and make a completely affordable, sensible, practical promise that will improve the commuting experience of an entire (albeit small) segment of rail commuters. I reckon it would cost less than $5,000 to convert them all. They’d save that in labour alone in the first month or two.
I saw something pretty amazing on the way home from work today.
When I boarded in Chatswood, I noticed another guy in a chair in the cabin. He was tucked between the seats near the guard’s compartment, and as the cabin was quite full, I wondered how he would get out when he needed to. I was also partly blocking the way, so kept an eye on him, ready to move when I sensed he was getting off.
As we pulled into Town Hall Station, he moved, and as many others were getting off too, I didn’t need to make room.
I was looking over his head, expecting the attendant to arrive with the ramp for him to roll off. Then I realised he wasn’t stopping at the door. Smooth as silk, he just lifted his front wheels off the ground, balanced, and lowered himself to the platform below on his back wheels. It was a pretty impressive manoeuvre; one I’d not seen before. As well as strength, it would have taken great control. I can’t imagine the guts required to do it for the first time. Town Hall is one of the biggest drops from train to platform of any station – about 20cm I’d guess. And there’s also the gap – at least 10cm.
As we approach The International Day of People with Disability (3 December) it made we wonder how relevant our definition of ‘disabled’ really is.
We try quite a few accessible accommodation options each year. Many work better than we expect. Some don’t.
We had searched long and hard for the right option in Canberra. Surprisingly, for a city with so many visitors and with so many accessible venues, good accessible accommodation is lacking. Most major hotels have a room or two available with suitable modifications. But we travel as a family, and what we really want is an apartment with a small kitchenette, and a maybe one or two bedrooms. Despite all the short-term apartment options in Canberra, I’ve yet to find one that is ideal.
With that dearth of options as a backdrop, we decided to try Redbrow Garden. Redbrow Garden is a B & B located on the outskirts of Canberra, between the suburb of Hall and the town of Murrumbateman. It only takes about 20 minutes to reach the centre of the city. Accommodation consists of four modern, individual en-suite rooms. There is also a three-bedroom garden guesthouse available. One of the on-suite rooms has wheelchair access and a modified bathroom.
The accessible room has a lovely outlook and is very pretty. The bathroom is also well designed. Bars are well located for both the toilet and shower. The floor is also well thought out — it’s an interesting concrete/pebble mix that is quite non-slip, even when wet.
Another interesting enhancement is that the shower is in fact two showers — one at either end of the wet area. It’s the first accessible shower I’ve seen that lets you shower with a friend!
However, there are also downsides. For me at least, the bed was much too high. At nearly 70cm, I simply could not get in. That made for an uncomfortable night sleeping in my chair.
Outside the room, there are some problems too. The car park is covered with large pebbles, which are attractive, but almost impassible in a wheelchair. When we tried to unload my chair became bogged in the pebbles and would not move. I had to transfer to my spare chair to get out of the bog. It was a difficult late night move, and I wouldn’t like to repeat it.
Additionally, the entry to the breakfast room is rather tricky, with a narrow sliding door and a sizeable door frame to navigate.
There’s no doubt Redbrow Garden is a lovely place. It’s a uniquely natural, small, family-owned rural retreat where the focus is on country hospitality. It is surrounded by a delightful rural garden. Canberra’s well known cool climate wineries and gourmet eateries are also very nearby.
Hosts David and Elisabeth Judge should be congratulated for trying to make their facility useable by wheelchair users. Unfortunately, not everything works and wheelchair-users would be well-advised to consider their needs and perhaps make arrangements to inspect before making a booking.
We were looking for somewhere to stay within reach of Burrawang, and had a tough time finding anything. Links House, in Bowral, was an option, but it really wasn’t suitable for a young family. It looked lovely for a quiet weekend away. Eventually, we settled on Ferndale Cottage at Willowview Farmstay, just out of Brayton, on the border of the Southern Highlands and the Tablelands: 40 minutes from Bowral and 20 minutes from Goulburn.
Farmstays can work well for us. It’s a different environment, because we live in the city; the kids can explore and have some space around them; and they are usually incredibly quiet places.
Set on one hundred and thirty acres by the Wollondilly River, the late 19th century cottage Ferndale offers uninterrupted views of the property and escarpment beyond, as well as a whole host of activities.
The access and disabled facilities are pretty good too. It’s not perfect, but owner Jan Scali has made a good effort to turn an historic farmhouse into an accessible facility.
The shower is especially well designed, with a very solid bench seat, plenty of space and well positioned rails. The rails for the toilet were, however, a bit limited and need some attention.
The house is nearly all accessible, though sometimes via circuitous routes. There is a large step going from the lounge to the hall leading to the veranda. You access the veranda by going out the front door and down the side of the house. There is also a step down into one bedroom and at one entrance to the bathroom. But these things are understandable in a building of its age, and the steps taken to work around them are largely successful.
The entrance to the house is simple and well designed. You park around the back and the entry is smooth, though slightly hilly.
The only lack of access that irritated me was the brick platform surrounding the stove. It meant I couldn’t get close enough to the stove to cook.
Another extra is that the farm is pet friendly. There is an enclosure with room enough for any dog to enjoy all the comforts of home.
We had prior arrangements which meant we couldn’t sample the range of activities on offer, but they include swimming in the river, fishing, horse riding, bushwalking and much more. It would have been nice to stay longer. We did have time to relax on the veranda and enjoy the magnificent view.
In all, Willowview is a welcome addition to the range of accessible properties and an example of how many holiday locations can be amde accessible with a little effort. While the access isn’t perfect, there has been an honest attempt to make it as accessible as the limitations of the property allow. Jan Scali should be applauded for her efforts.
Jane Caferella has an interesting article in the SMH today. It’s really about a National Disability Insurance Scheme, but it begins with some observations on non-disabled people using accessible toilets. I’ve joined the discussion, which is quite willing. You can find the article, and the discussion, at:
Here’s my comment…
All you folks who use accessible toilets and say ‘well, the disabled can wait like the rest of us’ are missing the point. You have choices. You can move to another cubicle, or another level in the building, or another building altogether, if you need to. It is an inconvenience, it takes a little time, but that’s the extent of your suffering. People in wheelchairs, and others who need accessible toilets have no such choice. They may have planned for hours, knowing the toilet in that venue is the only one they can use in the area. To arrive, busting, and find that the toilet is occupied, is more than inconvenient. Especially for folks with bladder or bowel urgency.
I’ll admit, I’m less concerned about parents with prams and strollers full of babies and toddlers. Venues should provide parents’ rooms, and when they don’t, I think parents deserve to cut a little slack.
For those who say ‘I’ve never seen a disabled person using those toilets’, well, I have; many times. But not as often as I’ve been using one myself and had someone pound on the door and tell me to hurry up – only to find an able-bodied person waiting outside when I emerge. I’m constantly surprised by how lacking in guilt their face is.
Simple rule – if you don’t need them, don’t use them. Better still, venues should install the MLAK lock system on accessible toilets. This system is the best guarantee that toilets are not used by people looking only to save time.
A recent farewell for a colleague and friend who is moving overseas gave me an opportunity to dine at Wildfire for the first time. Naturally, I jumped at the chance.
Opened in 2002 and situated in Sydney’s Overseas Passenger Terminal, Wildfire takes advantage of the rich history of Sydney’s Rocks district. The view is truly stunning; I could have looked out on the Opera House and Harbour all night and not bothered with dinner. The only thing that detracts from this world famous view is the infamous ‘toaster’ (known formally as Opera Quays) sitting like an ill-formed lump to the right of the Opera House. When you stroll the very pleasant shops and eateries of Opera Quays you really don’t get a sense of just how ugly it is. Wildfire gives a perfect perspective to do that, and to see, like all architectural monstrosities, how badly it has aged in just 10 years.
You enter Wildfire from the rear, which is flat entry. There’s a curb ramp just to the left of the entry, so access from the street or parking spaces is simple. It’s also a simple, and very pleasant, wheel around from Circular Quay Station (also accessible) if you choose to come by train.
The interior of Wildfire is quite stunning. The main dining room is large and luxurious, with high ceilings, adorned with chandeliers. As a large group, we were seated at a long table, and it was this table that first impressed me. It was high enough for me to get under in my powerchair. For once I didn’t need to eat dinner on my lap while seated a metre out from the table. While I’m sure this is just a happy coincidence rather than design, it’s no coincidence that there’s also plenty of circulation space. The place is built on a grand scale and that works for me.
The accessible bathroom is also well designed and very functional. Most importantly, it’s easy to get to, located just to the right of the main entry. There are few things more irritating in a restaurant than needing to ask multiple tables of diners to move to allow you to get your wheelchair through to visit the bathroom. Once there, the door opens inwards, the rails are positioned well, and there’s good circulation space. Everything is within reach and functional. My only gripe was that the door had one of those clever ‘butterfly’ locks that (for me at least) never work.
The menu is contemporary Australian, and consists mostly of grills, wood-fired meats and rotisseries. For this vegetarian, that was slightly confronting. Our host had (in advance) chosen a Brazilian-inspired ‘Churrasco’ menu featuring a selection of spit-roasted seafood and meats. However, the three of us in the group who were vegetarian were well catered for with an excellent Mushroom Risotto and several rounds of tasty vegetarian starters. Dessert was to die for, with very traditional European selections of chocolate mousse, tiramisu, crème brulee and more.
Wildfire presents a fine dining experience of culinary and service excellence, a wonderful wine list and acute attention to service detail – all packaged in a magnificent location and venue with great access. It’s a perfect choice for those times you want to show off the best of Sydney to your visitors.
I was asked to do an interview for the September issue of the quarterly journal Diversity Matters, published by the Diversity Council Australia. You can read the interview, and the rest of the journal, here.
A funny thing happened on Tuesday afternoon. That was the same day I’d had my Heckler article published in the SMH (see Sorry, Mate, below) and, among other topics, had criticised drivers for saying ‘sorry’ to me when I thoughtlessly cross the road in front of them.
I was out walking the dog again, and received a message from my wife that my son was already home from school and waiting at the front door with his driver. I wasn’t far from home, but I wasn’t there, so I had to hurry.
Blossom (the dog) was keen for a run, so we covered the last 2 blocks at full speed, and had only to cross the last road to be at our house. As we crossed the road, in my peripheral vision I could see a car turning into the street, but cars always stop for me. Hell, they stop and apologise for just being on the road. But I’ll admit, I didn’t stop and really look. I kept on and crossed the road.
Now, the car was perhaps a little closer than I had anticipated, but we missed each other comfortably enough. As usual, he wound down his window and shouted several words. ‘Sorry’ was not among them. It can be hard to discern all the words shouted from a moving car but I caught ‘idiot’ and ’statistic’, each preceded by an extended form of the most popular four-letter-word in the English language.
I wonder if he’d just finished reading my article. I he had, I’ll call that one an instant success!
This piece, previously published on Barrier Free, was Tuesday’s Heckler column in the SMH. Link to it here or read it below.
Why do people constantly apologise to me? If I dash across a road in front of a car, chances are the driver will wind down the window and shout ‘sorry’. If I bump into a pram on a busy street, and wake a baby, the mother will usually say ‘sorry’. If I run over a man’s toe in the isle of a shop, he too will offer ‘sorry’. Sorry for what? Just for being there I guess.
It doesn’t stop at sorry. I also get called ‘mate’ and ‘matey’. Not so bad? Mate is defined by context in Australian English. ‘G’day mate’ is always a relaxed greeting, whereas ‘turn the music down mate’ spoken through a locked screen is one step short of threats of physical violence. With me, it is usually coupled with ‘how are you feeling mate?’. And, when spoken in a gentler tone than regular speech and often accompanied by stroking my hand or a reassuring palm on my shoulder, it feels a little like I’m living in an endless rerun of Andrew Denton’s brilliant 1990 program The Year of the Patronising Bastard.
Now, it’s admission time. I do look a bit odd. Due to my medical condition, I use a wheelchair. Due to weakness in my facial muscles, I have a fixed expression, somewhere between startled and bored. When I think of something funny I let out a big, inexplicable, laugh. I can’t talk.
A few weeks ago, I was walking the dog, using my chair, as I do most days. As I need my good left arm to drive the chair, I walk the dog on my right. A cyclist dashed past, hurrying as if he was late for a Tony Abbott look-alike contest, and shouted to me ‘tiges, you should have her on the left’. Tiges? Short for Tiger I guess. When was the last time you heard a 44–year-old able-bodied man called ‘Tiger’? A while, I suspect.
My take on all this? I think ‘sorry’ is just a natural reaction to any minor collision or near-miss with a wheelchair. People assume it must be their fault. It’s not, but it’s understandable. Mate depends on the user and the context. Genuine mates get a pass. But others should be cautious – especially with the tone and the touching. Do you regularly touch pregnant women on the belly without asking? Matey is worse. It’s akin, I think, to men who insist on calling all women ‘girls’ or ‘love’. It’s best avoided.
And my friend in lycra? Sorry, mate, you’re a twerp.
Byron Bay Rainforest Resort – originally known as ‘The Wheel Resort’ – is somewhere I had long wanted to stay, but never had the opportunity. At last, a driving holiday to Queensland, to experience the ‘Worlds’ on the Gold Coast, provided that opportunity. We stayed 10 days, and enjoyed our visit immensely.
There are nine self-contained cottages set in the seclusion of 35 acres of remnant coastal rainforest, 3km from Byron Bay and only 300 metres from the ocean. Three are one-bedroom cottages and six are studios. We stayed in two different one-bedrooms and one studio. The one-bedroom cottages are certainly my preference. The extra space, and being able to put all of our gear somewhere out of the way made a big difference.
Interestingly, the cabins are all different, with quite different standards of access, though all have wide doorways, no steps, handrails in the bathroom and several cottages have lowered kitchen benches.
Owner and host, Murray Carter, tells me that the cottages were built over a period of time and some have been renovated since, which explains the variation. Murray is happy to discuss a guest’s specific needs and locate them in the best cottage for them if possible. My vote would go to cottage 8 as the most accessible, and I would ask for it again when next we return.
Cottage 8 has well positioned rails for both the shower and toilet. The shower head can be set high or low, which is a great idea. I was able to transfer to the toilet, back to my chair and onto the shower chair unassisted, which is a big achievement. The kitchen faces the same design challenges of every accessible kitchen (storage v bench usability) but in my view gets it right. And while the benches are high, because you can wheel under them, they can be used to cook or wash up. The floor is cork which is great when I drop things – they bounce rather than break!
I found cottage 2 the least accessible of the three we stayed in. In the bathroom, the rails were too short and the sink too high to use. The mirror was also too high for shaving. The shower can only be set at one height (too high) or hand held. We also stayed in cottage 6, which was in between in terms of access. My advice is to book early and talk to Murray before you arrive to ensure you get the cottage most suited to your needs.
One word of warning. The water in the bathrooms is HOT. Start with the cold and add some hot water, not the other way around.
The whole place has a very relaxed tone. Well behaved dogs are welcome. All the staff were friendly and very helpful – especially Murray who has owned the resort since 1995. We found him to be always around and very attentive, but he seems to implicitly understand some guests like to spend time alone. When we arrived (quite late at night) we expected to find everything shut up for the night, and a key left for us. Amazingly, he was there waiting, and helped us with our luggage and to get settled – a huge bonus. When we needed to move cabins, he moved all of our gear – without us even asking.
The grounds have excellent, smooth, clear paths leading between cabins, and decent dirt tracks to the beach and deep into the bush. Though a relatively busy road is nearby, the place is very quiet – sheltered by large stands of native trees. The resort property consists mainly of wetlands with extensive stands of large Melaleucas, stands of Bottlebrush, Banksias and littoral rainforest. There’s also a variety of birdlife.
The swimming pool is a special feature; a lovely 20m pool with gentle ramp and a sturdy rail. This is the first time I’ve seen a resort pool with such an entry. To me, hoists just add indignity to entering a pool. I don’t know about you, but I’ve never used a hoist in a calm, relaxed fashion. It’s a physical process. If more pools had ramps, I’m sure I’d swim more often. Unfortunately, the days we spent in Byron coincided with the coldest weather SE Australia has had in years. Pools in Byron Bay don’t normally need heating (and this one isn’t heated), but during our 10 day stay, I wish it had been.
There’s also a pleasant and very warm spa, which has a hoist. The Cabana, attached to the pool, is a good place to relax, play pool or cards, read a book, cook a group meal, or sit by the fire in winter. I could imagine if you were travelling with a group and occupying several cottages, this would be an excellent meeting point.
Next door to the resort (a short wheel along a pleasant bush track) there is an excellent little shop/grocer where you can buy general supplies, a few delicacies and fresh fruit and veggies. If it sold good coffee, it would be perfect! The nearest coffee is in Byron – a drive.
There are shared free laundry facilities and free WiFi.
Murray is careful not to raise expectations that his resort is any kind of haven for people with disabilities. He knows well that everyone’s needs are different. And of course there are things I would change about each cottage we stayed in. But overall, Byron Bay Rainforest Resort is a wonderfully peaceful and very accessible retreat where you can relax and revitalize. We found it hard to leave!
There’s some controversy today over the boarding procedures for the new Waratah trains, to be delivered to RailCorp in NSW starting in late 2010.
Wheelchair-users will have to flash cards to board trains
- Wheelchair-users forced to wave cards
- They will have to wait at end of platforms
- Move slammed as “embarrassing”
A RAIL operator wants commuters in wheelchairs to wave a “high-visibility” card to warn train guards they need a boarding ramp.
Disability groups are outraged that wheelchair-bound passengers in Sydney will now have to wait towards the end of the train platform – without shelter or safety lighting – in a so-called BAZ area (boarding assistant zone).
Read the full news.com.au article here.
I note that much of the criticism stems from the proposal for ‘wheelchair bound’ passengers to carry a flag or card to alert station staff or guards to their need to board. Personally, I’m not overly bothered by that. Because I don’t speak, I already carry a series of tags around my neck, stating where I want to go and what train I want to catch. Another (and one that is universally recognised by staff) is no big deal for me.
However… I also see that the new Waratah trains will have the guard in the rear cabin of the train. To me, that seems a major error. Currently, at most stations, wheelchair users are assisted to board by the station staff, not the guard. You need to go to the platform office and bang on the door to get attention and they bring out the ramp. Most platform offices are located (sensibly) in the middle of the platform. And guards are located in the middle cabin. That makes it a very short wheel from the office to the train. But now, we will have to alert the staff, and then push our way back down the full length of the platform to the guard’s cabin. On a busy platform, with many people rushing to board, this is going to be slow, hazardous and impractical.
I suspect what will happen is that wheelchair users will be asked to wait for the next train if times are tight or we will continue boarding in the middle carriage, far distant from the guard. Neither is a good option. Being distant from the guard increases the chance of being left on the train when your stop comes, and if you are not near the guard’s cabin, it’s very hard to alert them to the problem. Security too, is better near the guard’s cabin.
The end of 2010 is fast approaching. This needs some quick attention.
Today marks four years since I stopped driving. It’s something that happens to everyone, eventually. In my case, the time came sooner than I would have liked, but later than it should have.
Because my condition progressed quite slowly, driving was initially no problem. But as my legs became less useful, driving became harder. When my voice started failing, I wondered how I would deal with the police, if I was ever pulled over. Or how I would deal with an accident, even if it wasn’t my fault. But I kept driving.
I realised I had started driving more and more slowly, hugging the left lane, and resting my foot on the brake pedal in preparation for any red lights. But I was still driving.
My GP recommended a driving assessment, which I undertook, and passed, scoring 7 out of 10 – not bad for a guy who couldn’t use his legs. And I kept driving.
One evening, on the way home from work in the half light of dusk, I saw in my peripheral vision a child – no older than two – dash out of a street-side shop, between two parked cars and onto the road in front of me. Her desperate father was no more than a metre behind; stooped low and running, his arms outstretched as he willed her to stop. I froze. I didn’t swerve or touch the brakes. I expected an impact but it didn’t come. How I missed her I’ll never really know. I saw in my mirror that the car behind me swerved and braked violently. I assume she hadn’t quite reached my path and that saved her.
I pulled over, shaking uncontrollably. After about 40 minutes I had regained enough composure to drive slowly home. Amazingly, inexplicably, I kept driving.
Perhaps a week later I was listening to ABC morning radio and one caller was former NSW Children’s Court magistrate Barbara Holborow. She explained that she had given up driving as she no longer felt she was safe. She reasoned that while she probably could have retained her license for a bit longer, she could never have lived with herself if she had killed or injured someone, and that the modest inconvenience was a small price to pay for peace of mind.
When I arrived home that evening, perhaps my wife could see something had changed. As she helped me from the car, she asked ‘how much longer do you want to keep doing this?’ I answered ‘No more. That’s enough’ and that was the last day I drove.
I developed a relationship with a couple of taxi drivers who drove a premium wheelchair accessible taxi. They arranged that I could SMS my bookings to them, and offered a brilliant service. After a visit to my GP, The NSW State Government provided me with vouchers under the Taxi Transport Subsidy Scheme, a wonderful program that provides people with permanent disabilities with half price taxi fares. My employer generously offered to pay the remainder of my travel to work.
Later, after I moved to a powerchair, I learned to catch the train, and now use this method of public transport whenever I can. I know the trains are a pain for some, but for me, they’re brilliant. The station staff at my regular stations now know me and call ahead to the platform to make sure the train dwells long enough for me to get on.
Of course, there are things you miss when you don’t drive. I used to love long drives on country roads. And the convenience of course. The burden, also, on my wife, who is now our family’s only driver, is significant.
One thing that amazed me, after I stopped driving, was how many people — friends, family, work colleagues, even my doctors — said to me how much of a relief it was to them that I had stopped. They had been desperately worried whenever I ventured out. Why didn’t anyone say anything? Maybe they all figured it was for someone else to do. Or feared my reaction. Or perhaps they felt I was sensible enough to know when the time was right. Well, I wasn’t. I’m honestly not sure what I would have done if someone had sat me down and said it was time to stop, but I sincerely hope I’d have listened. I now know, if I knew someone in my situation, or even an elderly relative or friend I was concerned about, I’d certainly say something.
I’ve learnt there is life after driving.
When you’re in a foreign city, and away from your own customised home, it’s almost inevitable you surrender a bit of independence. Doubly so if you need to engage an agency nurse to help out with the essentials of life.
On this trip, the hotel was superb (more on this later) so I really only needed the nurse to help with dressing and getting in and out of bed. But that’s an almost impossible ask for a nurse trained to look after sick people. No matter how I tried to explain that I could clean my teeth or squirt my shaving cream without assistance, it fell on deaf ears. She was here to help, and help she would. No matter what I wanted.
I should have guessed what was to come when, on the first night, the nurse arrived with a bag of tricks that included plastic sheets and a bed pan. Everything had a procedure – from drying between my toes with a hair dryer, to the method of putting her rubber gloves on before I was showered. My muscles, especially in the mornings, move slowly, so when I was instructed to move – ‘stand please’, ‘sit please’, roll to the left please’, ‘lean forward please’ I often didn’t react sufficiently quickly and the instruction was repeated, slightly more loudly this time. I was greeted each morning with the question ‘did you have a bowel movement yesterday?’ Each time this question was asked, I simply shook my head in wonderment, and ignored the question. This proved to be a poor choice of actions. On the last day, my nurse arrived with laxatives!
Now, I don’t mean to belittle all of her assistance – some of it was essential. And all was provided professionally and I’m sure highly skilfully. I’m just genuinely puzzled about how to get the level of assistance you need – somewhere between going it alone and feeling like you are in intensive care. It can make the difference between a pleasant trip, and checking your dignity in at reception.
On this trip, I’ve chosen to bring my manual chair only, but it was a close run thing. I generally only use my manual chair at home, as I’m now very slow in it. But for bathroom transfers, it’s the only way to go. Water and powerchairs don’t mix. But getting around the hotel, and the city generally, in my powerchair is far easier.
I also understand airlines often struggle with powerchairs and they sometimes arrive damaged. That would be a disaster. In my view, better to have a limited manual chair than a damaged, or worse — non-functioning — powerchair.
Another thing that influenced me was how often I find a single step or two when I’m away. In my manual chair, that’s no issue. Someone can tip me back and it’s done. In the powerchair, I need a ramp. Just one more thing to carry…
Finally, taxis in Singapore are not like Australia. Every wheelie cab I’ve used is just a Mercedes Vito, unconverted, and the driver simply places a set of ramps beside the side sliding door. There are no tie-downs and no seat belts. That’s always struck me as odd in such a regulated country. A non-converted Vito has only limited headroom. I doubt I would fit in my powerchair, even if I could get in via the makeshift ramps.
So, I’ve gone for the manual option, and will report my retrospective here in the coming days.
Today I’m off to Singapore for a 3 day meeting. I haven’t braved international travel for a couple of years, so this is going to be interesting. I’m somewhat less able than I was 2 years ago. Still, I’ve prepared quite well, have a nurse coming morning and night to help, and have been doing intensive physio for 6 weeks, so I’ve given myself a better than even chance of coming through unscathed.
Whatever happens, you’ll read about it here.
One of the few times it’s an advantage to be a wheelchair user is getting through airports. This morning, I am flying to Singapore, and arrived at Sydney international terminal at 9.20am for my 11.20 flight. My colleague, Rob, met me at the taxi and together we went to the Singapore Airlines counter. Of course, it helps when you travel Business Class, but the whole process was incredibly smooth and efficient. We were in the lounge within 20 minutes of arriving. I always use the time in the lounge to stretch before the flight. No matter how large the seat, 8 hours in one place always makes me wish I’d stuck better to my stretching regime.
The Singapore Airlines lounge accessible bathroom is a beauty. The rail beside the shower runs the length of the room, encompassing a shower, with hand-held hose and a long shower seat. If, by some chance, I needed a shower before the flight, this is the place to need it.
They called us for boarding quite early — 40 minutes before departure. With Singapore, there’s no issue of them insisting I surrender my chair at check-in. In all the times I’ve flown with them, they’ve always let me take it to the gate. The one thing Singapore does that confuses me is they get me to transfer to an aisle chair at the gate when I’m seated in the front row. I can understand it if I need to make my way further back, but when I’m up front I’m sure it’s needless. I’ll push the issue on the flight home and see how I go.
The other area where Singapore is great is when I need lifting. There’s never been an issue. A few attendants step forward and off we go. I know many other airlines employ mechanical aids but Singapore is happy to lift, and I’m happy for them to do so.
Anyway, we’re an hour from landing now, so I’ll complete this post and return this evening.
I’ve been preparing a piece on accessible kitchens and found a recent article from the US that I thought was worth posting in its own right. It’s from the Minneapolis – St. Paul Star Tribune and you can read it here. I know when I was designing our kitchen, decent, practical articles were tough to find.
This story will appear in a different form in the excellent magazine Out & About With Kids. Visit www.oawk.com.au.
A visit to Western Plains Zoo, in Dubbo, is almost a right of childhood. Since taking delivery of a wheelchair accessible van, we determined to take our kids – Mary, 10, and Daniel, 8. But when one member of the family (me) uses a wheelchair, and another (Daniel) has autism, it takes more than determination to make such a trip happen. It takes planning, a sense of humour and a bit of luck.
After a lengthy search, we found an accessible cabin in the Big 4 Parklands caravan park. It had everything we needed, as well as being less than 2km from the zoo. There’s a pleasant pool, and an incredibly popular jumping pillow. The grounds are all accessible—there’s even accessible camping (with shared accessible bathroom facilities).
In Dubbo, we were joined by family friends and their three kids. Don’t let anyone tell you teenagers are sullen and unhelpful! When it comes to chasing an adventurous 8-year-old, who has no sense of danger, a fit 16-year-old is an absolute Godsend. Patrick, as well as his brother Ivan and sister Niamh, were amazing in their ability to engage with Daniel, which was as refreshing as it was helpful.
It rained most of our first day in Dubbo. The next day, as we ventured to the zoo at 6am for the early morning feeding tour we thought it might end in disaster. I had visions of my wheelchair bogged in the mud. Surprisingly, though it was quite muddy, and most paths are dirt, nothing was impassable. We were able to access all exhibits and, more importantly, see all the animals.
The morning tour is great because you have an experienced guide and see the animals when they are most active. Despite the best efforts of our guide to keep us together, Daniel decided to explore a less-trodden path. My wife, Ruth, and Patrick gave chase. By the time they caught him, the group had moved on and they were lost. It’s at this point you realise how big the zoo really is. Aided by phone instructions from our amazed guide ‘how did you get there…’ they eventually met us at the end of the tour. They saw parts of the zoo the public never sees!
The zoo is impressive. Most enclosures are surrounded by water, meaning there is uninterrupted viewing of animals from every angle. Because most animals won’t cross the water barrier, fences are light and the animals come right up to you.
Before we went, people had warned us ‘other than the zoo, there’s nothing in Dubbo’. We didn’t find that to be true at all.
The city of Dubbo is incredibly accessible. In the main street I couldn’t find any shop with stepped entry, which is great for prams as well as wheelchairs. It helps that the geography is flat, but you can also see there’s been a conscious effort to remove steps, which is to be commended.
The Old Dubbo Gaol is an excellent attraction and well worth the $10 entry. It also has surprisingly good access for a heritage building. We especially enjoyed the lifelike animatronic models which tell stories of famous inmates. It’s an enjoyable two hours.
Dubbo is also blessed with some very attractive parks, walks and cycling tracks. Elston Park (also known as the Water Park) had water spraying equipment that was of great interest to Daniel.
Despite best laid plans, the combination of a father using a wheelchair and a son with autism can lead to some interesting events. Such as the morning Mary and I were watching Daniel on the jumping pillow and he got away from us, darted into a nearby caravan (unseen even by the owners, who were eating breakfast in the annex) and emerged with cheeky grin and two Easter eggs. You can only apologise, explain as best you can and move on.
Caravan parks are friendly places and people tend to understand you are doing your best. The Big 4 Parklands in Dubbo is no exception. It was the perfect base for a great family holiday.
In the daily churn of news stories in an election campaign, I’m not sure how widely reported this will be, but Andrew Peacock was campaigning today in his old seat of Kooyong and said:
“You’d need to be pretty handicapped not to appreciate that this [Labor] government is dissolving before your eyes daily.”
That the Labor candidate in Kooyong is legally blind only makes his statement even more appalling.
You can read the whole story in the SMH Online edition here.
However, Peacock is a has-been, and what he thinks is pretty irrelevant. That’s not the case with the Opposition Leader, Tony Abbott. Abbott apparently thinks access and mobility issues are pretty low on the pecking order.
In making remarks about improving parliamentary proceedings, the federal Opposition Leader said:
“…to make sure that we go straight out of Question Time into the matter of public importance debate without waffly ministerial statements on things like the accessibility of cinemas. So I will change or I will seek to have the standing orders changed.”
I can see several sources reporting that he has now apologised for the statement. He was reported as saying:
“I was misinformed about that particular statement. It was a poor example to use. And I’m sorry if I have caused any offence.”
Personally, I’d have liked him to retract the statement. It’s not a lot to say “Clearly, I do not think providing access to cinemas is waffle.” If, of course, that’s true.
It was the 20th anniversary of the Americans with Disabilities Act a few days ago. Here are President Obama’s remarks, which can also be found here.
Remarks by the President on 20th Anniversary of the Americans with Disabilities Act
6:26 P.M. EDT
THE PRESIDENT: Thank you. Good evening, everybody. (Applause.) Thank you so much. Well, we have a gorgeous day to celebrate an extraordinary event in the life of this nation. Welcome, all of you, to our White House. And thank you, Robert, for the wonderful introduction. It is a pleasure and honor to be with all of you on the 20th anniversary of one of the most comprehensive civil rights bills in the history of this country — the Americans with Disabilities Act. (Applause.)
I see so many champions of this law here today. I wish I had time to acknowledge each and every one of you. I want to thank all of you. But I also want to thank our Cabinet Secretaries and the members of my administration here today who are working to advance the goals of the ADA so that it is not just the letter of the law, but the spirit of the law, that’s being applied all across this country. (Applause.)
I want to thank the members of Congress in attendance who fought to make ADA possible and to keep improving it throughout the years. (Applause.) I want to acknowledge Dick Thornburgh, who worked hard to make this happen as Attorney General under President George H.W. Bush. (Applause.)
And by the way, I had a chance to speak to President Bush before I came out here, and he sends heartfelt regards to all of you. And it’s — he’s extraordinarily proud of the law that was passed. He was very humble about his own role, but I think it’s worth acknowledging the great work that he did. (Applause.)
We also remember those we’ve lost who helped make this law possible — like our old friend, Ted Kennedy. (Applause.) And I see Patrick here. And Justin Dart, Jr., a man folks call the father of the ADA — whose wife Yoshiko, is here. (Applause.) Yoshiko, so nice to see you. (Applause.)
I also notice that Elizabeth Dole is here, and I had a chance to speak to Bob Dole, as well, and thank him for the extraordinary role that he played in advancing this legislation. (Applause.)
Let me also say that Congressman Jim Langevin wanted to be here today, but he’s currently presiding over the House chamber — the first time in our history somebody using a wheelchair has done so. (Applause.)
Today, as we commemorate what the ADA accomplished, we celebrate who the ADA was all about. It was about the young girl in Washington State who just wanted to see a movie at her hometown theater, but was turned away because she had cerebral palsy; or the young man in Indiana who showed up at a worksite, able to do the work, excited for the opportunity, but was turned away and called a cripple because of a minor disability he had already trained himself to work with; or the student in California who was eager and able to attend the college of his dreams, and refused to let the iron grip of polio keep him from the classroom — each of whom became integral to this cause.
And it was about all of you. You understand these stories because you or someone you loved lived them. And that sparked a movement. It began when Americans no longer saw their own disabilities as a barrier to their success, and set out to tear down the physical and social barriers that were. It grew when you realized you weren’t alone. It became a massive wave of bottom-up change that swept across the country as you refused to accept the world as it was. And when you were told, no, don’t try, you can’t he — you responded with that age-old American creed: Yes, we can. (Applause.)
AUDIENCE MEMBER: (Inaudible.)
THE PRESIDENT: Yes, we can!
Sit-ins in San Francisco. Demonstrations in Denver. Protests in Washington, D.C., at Gallaudet, and before Congress. People marched, and organized, and testified. And laws changed, and minds changed, and progress was won. (Applause.)
Now, that’s not to say it was easy. You didn’t always have folks in Washington to fight on your behalf. And when you did, they weren’t as powerful, as well-connected, as well-funded as the lobbyists who lined up to kill any attempt at change. And at first, you might have thought, what does anyone in Washington know or care about my battle? But what you knew from your own experience is that disability touches us all. If one in six Americans has a disability, then odds are the rest of us love somebody with a disability.
I was telling a story to a group that was in the Oval Office before I came out here about Michelle’s father who had MS. By the time I met him, he had to use two canes just to walk. He was stricken with MS when he was 30 years old, but he never missed a day of work; had to wake up an hour early to get dressed –
AUDIENCE MEMBER: So what.
THE PRESIDENT: — to get to the job, but that was his attitude — so what. He could do it. Didn’t miss a dance recital. Did not miss a ball game of his son. Everybody has got a story like that somewhere in their family.
And that’s how you rallied an unlikely assortment of leaders in Congress and in the White House to the cause. Congressmen like Steny Hoyer, who knew his wife Judy’s battle with epilepsy; and Tony Coehlo, who waged his own; and Jim Sensenbrenner, whose wife, Cheryl, is a tremendous leader and advocate for the community. And they’re both here today. (Applause.)
Senators like Tom Harkin, who’s here today, and who signed — (applause) — who signed part of a speech on the ADA so his deaf brother, Frank, would understand. And Ted Kennedy, whose sister had a severe intellectual disability and whose son lost a leg to cancer. And Bob Dole, who was wounded serving heroically in World War II. Senior officials in the White House, and even the President himself.
They understood this injustice from the depths of their own experience. They also understood that by allowing this injustice to stand, we were depriving of our nation — we were depriving our nation and our economy of the full talents and contributions of tens of millions of Americans with disabilities.
That is how the ADA came to be, when, to his enduring credit, President George H.W. Bush signed it into law, on this lawn, on this day, 20 years ago. That’s how you changed America. (Applause.)
Equal access — to the classroom, the workplace, and the transportation required to get there. Equal opportunity — to live full and independent lives the way we choose. Not dependence — but independence. That’s what the ADA was all about. (Applause.)
But while it was a historic milestone in the journey to equality, it wasn’t the end. There was, and is, more to do. And that’s why today I’m announcing one of the most important updates to the ADA since its original enactment in 1991.
Today, the Department of Justice is publishing two new rules protecting disability-based discrimination — or prohibiting disability-based discrimination by more than 80,000 state and local government entities, and 7 million private businesses. (Applause.) And beginning 18 months from now, all new buildings must be constructed in a way that’s compliant with the new 2010 standards for the design of doors and windows and elevators and bathrooms — (applause) — buildings like stores and restaurants and schools and stadiums and hospitals and hotels and theaters. (Applause.)
My predecessor’s administration proposed these rules six years ago. And in those six years, they’ve been improved upon with more than 4,000 comments from the public. We’ve heard from all sides. And that’s allowed us to do this in a way that makes sense economically and allows appropriate flexibility while ensuring Americans with disabilities full participation in our society.
And for the very first time, these rules will cover recreational facilities like amusement parks and marinas and gyms and golf facilities and swimming pools — (applause) — and municipal facilities like courtrooms and prisons. (Applause.) From now on, businesses must follow practices that allow individuals with disabilities an equal chance to purchase tickets for accessible seating at sporting events and concerts. (Applause.)
And our work goes on. Even as we speak, Attorney General Eric Holder is preparing new rules to ensure accessibility of websites. (Applause.)
AUDIENCE: Yes, we can.
THE PRESIDENT: Yes, we can.
We’re also placing a new focus on hiring Americans with disabilities across the federal government. (Applause.) Today, only 5 percent of the federal workforce is made up of Americans with disabilities — far below the proportion of Americans with disabilities in the general population. In a few moments, I’ll sign an executive order that will establish the federal government as a model employer of individuals with disabilities. (Applause.) So we’re going to boost recruitment, we’re going to boost training, we’re going to boost retention. We’ll better train hiring managers. Each agency will have a senior official who’s accountable for achieving the goals we’ve set. And I expect regular reports. And we’re going to post our progress online so that you can hold us accountable, too. (Applause.)
And these new steps build on the progress my administration has already made.
To see it that no one who signs up to fight for our country is ever excluded from its promise, we’ve made major investments in improving the care and treatment for our wounded warriors. (Applause.) To ensure full access to participation in our democracy and our economy, we’re working to make all government websites accessible to persons with disabilities. (Applause.)
We’re expanding broadband Internet access to Americans who are deaf and hard of hearing. We’ve followed through with a promise I made to create three new disability offices at the State Department and Department of Transportation and at FEMA.
And to promote equal rights across the globe, the United States of America joined 140 other nations in signing the U.N. Convention on the Rights of Persons with Disabilities — the first new human rights convention of the 21st century. (Applause.)
America was the first nation on Earth to comprehensively declare equality for its citizens with disabilities. We should join the rest of the world to declare it again — and when I submit our ratification package to Congress, I expect passage to be swift. (Applause.)
And to advance the right to live independently, I launched the Year of Community Living, on the 10th anniversary of the Olmstead decision — a decision that declared the involuntary institutional isolation of people with disabilities unlawful discrimination under the ADA. (Applause.)
So HHS Secretary Kathleen Sebelius and HUD Secretary Shaun Donovan have worked together to improve access to affordable housing and community supports and independent living arrangements for people with disabilities. And we continued a program that successfully helps people with disabilities transition to the community of their choice. (Applause.) And I’m proud of the work that the Department of Justice is doing to enforce Olmstead across the country.
And we’ve finally broken down one discriminatory barrier that the ADA left in place. Because for too long, our health care system denied coverage to tens of millions of Americans with preexisting conditions — including Americans with disabilities. It was time to change that. And we did. Yes, we did. (Applause.)
So the Affordable Care Act I signed into law four months ago will give every American more control over their health care -– and it will do more to give Americans with disabilities control over their own lives than any legislation since the ADA. I know many of you know the frustration of fighting with an insurance company. That’s why this law finally shifts the balance of power from them to you and to other consumers. (Applause.)
No more denying coverage to children based on a preexisting condition or disability. No more lifetime limits on coverage. No more dropping your coverage when you get sick and need it the most because your insurance company found an unintentional error in your paperwork. (Applause.) And because Americans with disabilities are living longer and more independently, this law will establish better long-term care choices for Americans with disabilities as a consequence of the CLASS Act, an idea Ted Kennedy championed for years. (Applause.)
Equal access. Equal opportunity. The freedom to make our lives what we will. These aren’t principles that belong to any one group or any one political party. They are common principles. They are American principles. No matter who we are — young, old, rich, poor, black, white, Latino, Asian, Native American, gay, straight, disabled or not — these are the principles we cherish as citizens of the United States of America. (Applause.)
They were guaranteed to us in our founding documents. One of the signers of those documents was a man named Stephen Hopkins. He was a patriot, a scholar, a nine-time governor of Rhode Island. It’s also said he had a form of palsy. And on July 4, 1776, as he grasped his pen to sign his name to the Declaration of Independence, he said, “My hand trembles. But my heart does not.” My hand trembles. But my heart does not.
Life, liberty, the pursuit of happiness. Words that began our never-ending journey to form a more perfect union. To look out for one another. To advance opportunity and prosperity for all of our people. To constantly expand the meaning of life, liberty, the pursuit of happiness. To move America forward. That’s what we did with the ADA. That is what we do today. And that’s what we’re going to do tomorrow — together.
So, thank you. God bless you. And God bless the United States of America. Let me sign this order. (Applause.)
END 6:44 P.M. EDT
An interesting article reprinted today, originally from the LA Times.
Read it here…
Here’s the link to the detailed design and building guidelines for livable housing. I’ll take the time to write my impressions in the coming days.