I just spent two weeks in Japan and being me and being interested in how other cultures deal with people with disability, I was always on the look out and trying to work out practices and attitudes toward people with disability. Of course not having a disability myself makes first hand experiences a bit difficult, as does my inability to speak and understand any Japanese. So I am reduced to my perceptions and impressions.
First up, physical access appears to be pretty good. Lots of ramps, endless tactile tiles (to be honest they got a bit annoying as they were everywhere and I kept walking on them, and after a while walking gets tough and those tiles don't help the worn out walker ;-).
In terms of physical access some of my experiences are captured in the two photos below:
The first photo is of a handrail leading down a set of stairs at an Osaka subway station. It has information about the direction written on the handrail in braille. How cool is that?
Then the second photo is a barrier free access map, outlining the route to the most sacred part of the mountain at Koyasan. That is great. Except what it really meant was people in wheelchairs being dragged over a gravel path, made up of stones way too large for any person in a manual chair to navigate on their own.
And then there is the attitudinal stuff. Not speaking the language and only being there for a short visit, this is much harder to pick up. So the following can only be impressions.
There was the young blind guy traveling with an older man (maybe his grandfather) on the train. An older woman offered to give up her seat to the young guy. A conversation ensued with grandpa saying something like (I am certain of it) he is blind but he can stand, his legs are fine. Of course the whole conversation goes on as though the blind guy is not there at all. Or maybe the woman assumed he was deaf as well? By the way I did see quite a few Deaf people out and about.
Then there was a moment of a women talking very loudly to herself and clearly being distressed in a very flash supermarket. Nobody knew what to do and there was whispering and gossiping going on among the staff and customers.
In a society that is so controlled and where behaviours and ways of being are so regulated, people with obvious (whatever that means) mental illnesses, autistic behaviours and/or intellectual disability stick out like a sore thumb.
I saw very few people with those kind of disabilities (yes, I know not every disability is visible) in the countryside, but quite a few people in the city. It seems there were quite a few people with intellectual disability out and about, traveling, going about their business. There were a few people I saw on the train with obvious autistic kind of behaviours, who were, like in Australia, ignored with nobody engaging at all. Generally there was very little staring, but whether that was from people being ok with and used to people with all kinds of disability being out and about, or whether people are just way too polite to stare, I don't know.
Overall my impressions about disability in Japan are best summed up in this poster, also found on a railway station.
I think it suggests to the general public that if someone in a chair is stuck because of stairs, just get a group of friendly able bods together, lift and carry the person up the stairs. If you are blind or vision impaired in Japan, you might find yourself being approached from behind and swooped up by the arm.
Japan presents itself as a friendly, helpful society.
On my last day I stepped out of a railway station and there was a group of people with all sorts of disabilities waving banners, handing out fliers. I tried to start a conversation. It seems this was either a protest against the lack of resources being put into thinking about what happens to people with disability in emergencies or it was collecting money for people with disability in Nepal. Either way, it told me that in Japan, like most places around the world, people with disability are organising themselves.
After 20 or so years of working with people with disability I might be excused for thinking that there possibly is a genetic or other deeper (maybe more mysterious) link between people with all sorts of disability and bowling. While in the general community only very few people under, let’s say, the age of 55 years bowl, it seems to be endemic to the activities many, many people with disability are involved with.
Now I’ll come clean straight up. I find most sports pretty boring and I don’t really understand why you would want to do any of it, but that’s not my point.
My point is this: Some time ago I had a conversation with, let’s call him, Frank. The conversation went something like this:
Me: Frank, you have been bowling twice a week for at least 15 years.
Frank: Yeap, two times a week
Me: You must really love it.
Frank: Yes, I go two times week.
Me: So, you must be really good at it.
Frank: No, I don’t bowl.
Me: (???) What do you mean? You don’t go bowling?
Frank: Yes I go bowling, two times a week.
Me: But you don’t bowl?
Me: What do you do then, at the bowling thing?
Frank: (and his whole face lights up) I talk to Eric.
Me: Eric, who is Eric?
Frank: Eric comes on another bus. We talk about trains. We love trains!
Now I am not saying everyone who plays bowls should be talking about trains. Nor am I saying that everyone who plays bowls really loves something else. I am saying something about listening and what we listen for, but all that communication stuff is probably for another blog.
I want to focus on this idea of choice and what it actually means. With Frank, he has learned to make the best out of going to bowling and he has learned to ‘like it’.
The National Disability Insurance Scheme (NDIS) is just around the corner, and Consumer Directed Care (CDC) is becoming a reality any minute now; we all have to make more and more decisions. With lots of talk about choice and people being in control, it sounds sometimes like just because we have all this choice life will be wonderful.
But it is important to remember:
Sheena Iyengar, a woman who researches choice (watch/listen to her Ted talk on “The Art of Choosing”) provides 4 tips on choice making:
futures upfront developed a range of resources for My Choice Matters, including this workbook about choice making.
I just got some money out at the airport and here at the ATM it says “we support the Sydney Gay and Lesbian Mardi Gras”. Apparently my bank also supported Pride in Auckland. Celebrating inclusion and diversity it said. Well good on my bank and apparently they will be donating ATM operator fees for non-bank cardholders from its GAYTMs (look it up it’s pretty and apparently gay) during the festival to Twenty10, a not-for-profit organisation working with and supporting people of diverse genders, sexes and sexualities, their families and communities. ATM operator fees from ‘The only GAYTM in the village’ will be donated to a charity near its location. Mark Hand, the banks Managing Director Retail Distribution and member of their Diversity Council said: “Building a culture of respect and inclusion is important to our staff, our customers and the communities that we live and work in.”
515 days? Is that all?
Only a minute ago the NDIS seemed like years away for most of us. Now, the rollout of the NDIS is promised to start in 2016, to be completed by 2018. And because at this stage nobody knows where it will roll out first (after the trial sites), we all have 515 days to get ready.
Over the past 2 years I have worked with hundreds of people with disability, their families and allies in many, many workshops across NSW. I have also worked together with many services getting ready for the NDIS.
Below are my three 'must do now' tips for consumers and for service providers based on what I have learned over the last two or so years:
For people with disability and families/allies:
It seems to me if you enter the conversation with NDIA with what's available, you walk away with no more or even less than what you get now. When you walk in there with what's possible, then the NDIA will only be part of those possibilities and other options might open up over time.
2. Plan. Plan now and plan bigger than the NDIS.
Plan for a good life and all its different parts. Make sure your life is bigger than the funding available; no amount of government funding with give you a happy, fulfilled life. Money sure can help, but if it becomes the only answer, life is likely to be pretty bleak. Bishop Tutu said to be human is to be in relationship with others. Make sure relationships are in your plan, maybe even at the centre of your planning.
3. Speak up and make sure your voice is heard.
If you are not so great at speaking up, use the next 515 days to practise. Practise everywhere you can. Maybe if you want to start speaking up about something that is done to others (sometimes people find that easier), practise when it doesn’t matter so much and then start practising when you really care. Get the practice in, work out what works ok and what doesn't work at all, maybe get a buddy who can give you feedback. Get people around you who can assist you with speaking up (but not take over!)
For service providers:
There is a lot we do know and while the details might change (they almost certainly will) the key elements are clear: how much money will be in the scheme; how much will be paid for certain services; how many more people are estimated to be eligible. One thing is for sure: people will definitely have more control and choice, and over time people will exercise this choice and control more and more.
2. Listen to people, like really listen.
Listen to people with disability, their families and allies. Listen to your frontline staff and your volunteers. Listen for what's possible and listen for what makes things hard for people and listen for solutions
3. Have integrity in everything you do
Don’t say things you don’t really believe in or you can’t really deliver on. Have integrity and if things go wrong (and of course things go wrong sometimes) make sure you clean up afterwards. Have integrity in everything you do and use that integrity to build relationships and support people to imagine a good life.