Monday, 11 November 2013

On the topic of Institutions, big or small, for disabled people.

I believe that all Institutions should be abolished for anyone. This NDIS is the opportunity to do this. I don't have all the answers for alternatives because what would I know about supporting a person who has multiple profound disabilities. I am not a parent or carer of someone else. And just because I talk about rights and ableism doesn't mean I have to have all the solutions for the problems that the non-disabled have created. How could I? I haven't had the right to question ableism let alone challenge it till lately so how could I possibly have all the solutions for every disabled person? It would also be extremely presumptuous of me if I thought I could.

Someone told me that I have always had the right to question ableism or anything else. It fact until the last 20 years I have not had the actual "right" (legal right) to question ableism. Oh yes I could say it and they would tell me to get stuffed. And that was it. No recourse.

They also suggested that I be careful about judging others and seeing my own experience as universal. I don’t think my experience is universal but there is a tried and tested universal ‘way’ of living. I know how able bodied people live and seeing as they reckon they are the majority then why shouldn't the majority be all people. I am a people. Other disabled people are people.

If it's a good ‘way’ for able bodied people to live after thousands of years of evolution then we must all be able to live like that. It must work fairly well. The thing is that we disabled people have not until recently be included in that ‘way’, the way of the nuclear and extended family. We have been killed, left behind, cared for by families, died young, left to wander the streets and beg, or more recently, locked up in institutions. And the built environment was built to exclude us and still is. People’s attitudes were formed to exclude us and still are.

Then people tend to say, we moved people out of institutions and it didn’t work. The devolution of the Mental Institutions is a perfect example of a very badly done devolution. Throw them out and seriously underfund support. Terrible. So it is deemed a failure. And it is. But not because the people with psychiatric disability failed. No. But because the system and society failed to accommodate them. Failed to make a genuine space that would fit them.

Someone once said that able bodied people are PUT in institutions all the time and "dumped together". Kids are put in (segregated into) classes at school. All sporting competition is graded/segregated into levels. Many old people choose to live in old people's homes. But I just cannot understand how anyone could compare school classes, or sporting teams with a place of abode, a place you live your life in every day or week days or whatever you are given for the rest of your life. And I am not sure that too many old people really choose to live in old people’s homes.

Someone said that it was great because a band or group can go and entertain a bunch of old people in one place in an old folks home and it would be too hard to go to each individual old person to entertain them.

Ahem, so we put old people in institutions so that the band only has to go to one place, for the convenience of the band! Isn’t the usual way that the band goes to a venue and the people go (with their needed supports) to the venue and see the band. And then they go home with their needed supports. That’s what younger people do.

We are all human and we all eat, drink, shit, pee, recreate, work where possible, sleep and other stuff. The differences in how we disabled people do those things is the crux of this matter and is often used as a justification for institutionalising us. Because those differences have not been accommodated by the whole of society. The NDIS is a means to pay for and create those new ways of accommodating those differences. That is why we must aim high now. Right now while it is still forming. We must make the rhetoric REAL. We must challenge when they want to restrict us in a way that a non-disabled person would never be.

For example, compare, a helpless 4 month old baby and a helpless severely multiply disabled 35 year old and a helpless frail, wobbly 78 year old with dementia. They all have the same needs. And the same abilities. Pretty much. Because, compared to the “norm” they are all “disabled”. The 4 month old gets looked after and nurtured and helped to be the best she can. The 35 year old is left to exhausted parents with some crumbs of help until the parents die or she is put in an institution. The 78 year old is left to exhausted children (if she has any willing) with some crumbs of help until they die or she is put in an institution. But they are ALL people with the same human rights. Yes. So why the different treatment?

We know that the 4 month old’s different needs are temporary, they will grow up. That’s terrific. We even know that in a way the 78 year old’s needs are temporary but still could be a very long time. And the 35 year old’s needs are for their whole life. OH NO! SHIT!! And they all turn away. And pop a coin in a tin. So we get used to this neglect over the centuries. The able bodied get used to it too. And nobody can see a way out of it because that ‘way’ is what we know. That’s how it is. Shrug. But NO we said and eventually they said NO too, and the NDIS was born. Yes it’s just a baby and must be nurtured so it can grow and become the best it can be.

So let’s find a way to use it.

To be very clear, I am talking about Institutions as being places large or small that are separated from the majority of the population, where people with different needs for support are PUT for all or part of their lives. Not a school or a sporting group which are normal for the majority. But put together for the convenience of the people who are meeting their different needs or perhaps even a band who might want to entertain them. A place that is not normal. And seeing as disability is normal just like babyhood and agedness is normal then I think we should be able to live the normal and ordinary life in the same way as the majority do. It won’t happen overnight but we must help to make it happen.

Thursday, 7 November 2013

The NDIS Paradigm Shift in Reverse!

I was asked to speak at a Forum regarding the Paradigm Shift that the NDIS could engender. We were asked to talk on the topic “How will we know when the paradigm shift has happened. What would it look like?” In my individual way I decided to turn it around! This is what I said:

I will start with reading from "The New Sociology for Australians" by Margaret Sargent. It was in this book that I discovered I was deemed as "deviant". But then I was pleased to note that Sargent turned it around later on with a chapter entitled "It's Those Normals Who Cause all the Trouble".

Sargent starts with a quote from E M Lemert. "Older sociology tended to rest heavily upon the idea that deviance leads to social control. I have come to believe that the reverse idea, i.e. that social control leads to deviance, is equally tenable."

The chapter begins: "to be Normal in Australia it is important - ONE. to belong to certain dominant groups of people who are male, Australian-born, Anglo Celtic, middle-class, about 25 to 55 years of age, Protestant and heterosexual; TWO. to live in a nuclear family household in your own house; and THREE. to be in paid work and believe in the work ethic for all. Precise figures are not available but it could be estimated that as many as 10% of people must be included in this problem group known as 'Normals '. These men are the ones whose indulgence in power perversion and obsessive pursuit of wealth are a problem to the majority: many of the difficulties of society at large ultimately flow from the dramatic types of normality which this group displays. Unfortunately most case histories of normality, indicate that the condition is largely inborn and has an inherited biological basis.

Family background is usually unfavourable, in so far as the nuclear family has inhibited any tendency towards autonomy, and the requirement to engage in steady paid work has prevented innovation of any kind. The disease of normality is largely irreversible because of the satisfaction afforded by the normal career and the self concept of utter superiority. Nevertheless, a Normal Persons Act has been enacted to provide compulsory aversion therapy to money and power. These people must be completely re-socialised. New normality treatment facilities are being built and training programs for normality experts have begun. The Minister for police has recommended an immediate crackdown: he said, 'we must stamp this sort of thing out before it spreads

Now I will describe a day in the life of a Normal. New lives for normal people that are ruled by The Normal Persons Act! The NPA. The Act has rules designed to reform Normal ways and practices. You may recognise some of them.

This Is Your Life as a Normal Under the NPA

The alarm goes off way too early and you wake up alone. Your partner has left you because living with you was just too much for them. Firstly, it was just the endless not being able to leave you alone for any length of time, (required under the NPA). The final straw was when you had to have a different bed as required under the NPA. That requirement means that now Normals must sleep in a single bed. That led to the breakdown of the relationship. Your partner left you!

No shower today even though you have to go to work. Under the NPA water is restricted to your house to inhibit "normal" behaviours. You are, however, on the waiting list for extra water if you overcome your Normalcy.

Time to get dressed. As you put your shoes on you look at them in disgust! This is the only pair of shoes you have and they are getting very old.
They are cracked down one side and your foot shows through the crack. They hurt your feet and sometimes they fall off. You are on a waiting list for a new pair of shoes but it will be a while before you are allowed any.

You only work part time because, for a Normal like you, it is very hard to get a job. And you have to go to the Normality Rehabilitation Centre three times a week for rehab. You hobble out to your car and get in. You wonder how long this car is going to keep going because it is ancient and you can't get another when you want, due to restrictions under the NPA. And then when you do get one you will be limited in your choice as there is a certain list of brands that you can choose from. You hope your car doesn’t break down today.

You arrive at work and are very grateful that there is still one special park left, for Normals like you. You take the convoluted route in through the back door, past the rubbish bins, down a very long corridor and upstairs in the goods lift. Normals are only allowed in that way.

You do your work for the day but lose quite a bit of work time because you have to go down to the public toilet next door several times during the day because Normals aren't allowed to use the toilet in the building they work in. You know your workmates resent this loss of input by you and it makes you angry because there is nothing you can do about it. You have asked and asked for a toilet for Normals to be installed but are continually told that it is too expensive.

On the weekend you have saved up enough money out of your meagre part-time wages to go out for dinner with some friends. You hobble out to your car again feeling very ashamed of your ugly old shoes cos you know all of your friends will have their nice shoes on. They will be able to dance all night. But not you because it will hurt too much. It's taken quite a bit of time to find a restaurant that will allow Normals in. You had to ring around and it took ages to find one. You have a nice dinner but the shine is taken off a little bit because people keep looking at your shoes. One person even asked why you have such old shoes on.

Anyway, out to the car for the drive home. Oh blast and damn, it won’t start. It's after nine now and you know that there is no rescue because you have to be home by 10pm under the NPA curfew. You call a special taxi, for Normals, who must be escorted after curfew, and they tell you that it may be a couple of hours wait as there are not many of the Normals Escort Taxis out this late at night. You are grateful that a friend waits with you because Normals tend to get hassled if out alone after curfew. You get home after midnight tired and cranky from waiting and cos your feet hurt. You feel like giving up.

Now that all sounded completely ridiculous didn't it? Normal people don’t need all that management and silly rules. It’s obvious how it restricts their capacity.

Sargent writes in relation to deviant people, "policies are adopted which enable these groups to be managed. The ideology that "help" is being given, legitimises these forms of management." I would substitute the word "controlled" in the place of "managed".

The paradigm shift needs to happen in the minds and beliefs of us all, non-disabled and disabled alike. A shift to understand that our lives do NOT need to be managed and controlled and restricted just because we are DIFFERENT.

I am about to use a couple of words that used to apply to us disabled people. Words that we don't use anymore cos they are now insulting. Yet we are still being insulted every day by the TREATMENT that hasn't changed along with the words. Let them ring in your ears and remind us all that a Shift has to happen.

I will know that the paradigm shift has occurred when I am being TREATED like a PERSON and not like a retard cripple.

Wednesday, 6 November 2013

No Blog post today - no spoons

I have failed to blog twice now I believe. I realised that I only have so many spoons. They were used elsewhere.

Yesterday I drun to the dentist, 9.45 am, eek, and then had lunch at the QEH cafeteria and talked to an elderly couple for a short while. Got my fix of mum and dad substitutes. Drun to Bunnings and was uninspired. Home for a cuppa and then drun to the pet supplies and bought some fish for the bath pond in my Bromeliad house (carport). Mia visited and we sat while the fish bags adjusted temperature in the bath, released them and watched them as they explored.

Today I went to a focus group, 10.00am, to inform Adelaide City Council on Pavements and Surfaces. My main and opening comment was that they were crap! May talk about the whole thing for another blogpost. I then met Sue for lunch at Chinatown near the Market and went back to her place in Christie Walk a few blocks away. Cuppa and yak. Christie Walk is a great example of city medium density eco living. Google it for a video.

Today was a day of old faces too. At the focus group I recognised the woman next to me but couldn’t place her. In the break she asked if I remembered her. Turned out to be Vicki from Somerton Crippled Children’s Home from 43 years ago! Always liked Vicki.

And then at Sue’s there was a knock on her door and a man was speaking to Sue and she opened the door wider and introduced me to Roman!!! From my Radio Days 32 years ago!!

On a wander around the Walk with Sue we met another neighbour with his whippet Billy and we sat and talked in one of their little garden room spots under the trees. Takeaway Lucia’s spag bol purchased on the way through the Market to catch a train home.

The weather was perfect and the company was good. I did a bit of work and had some fun. Ate some nice tucker and good conversation. So not enough spoons to write a blog post today.

Sunday, 3 November 2013

Ableism and Ableist People aka Let's call a Spade a Spade

I know that we must call a spade a spade and put Ableism right on up there next to Sexism, Racism and Homophobia and many other scared weird hate isms. We must stop calling it "disability discrimination". When the general public hear the word disability they think of it (us) as someone else's "problem". They pop a coin in the beggars tin. They think Special Needs People need to be "dealt" with by Specialists in a Special Place (away from them) and they eSpecially do not particularly want to hang out with us. For of course they have no Special Skills to be able to approach the Special People. Those Spastics. Those Retards. Those Deaf and Dumb.

Do NOT use the D word. If we keep referring to their label for us then that is where we will stay. Disabled.

THIS discrimination belongs with those who do it. Call it after the people who discriminate. Call it Ableism. Put it where it belongs!!

I believe that it has become very difficult for white people to say that black people are lesser than they are. Or for men to say that women are inferior to them. It is easier cos it is just gender and skin colour.

However, with us crips the story is different. The "Able" people, the self-appointed Normal people can point to us and say - "you can't walk or see or speak or understand LIKE ME so you must be inferior. It's obvious! You are not Normal."

What they fail to see is that they have never built the world or their attitudes to include US with equal opportunity. When it comes to our access to equal opportunity, it suddenly costs too much. Never mind what it costs to accommodate sighted people's need for lighting or hearing people's need for hundreds of noise emitting devices, or chairs sitting around empty most of the time everywhere, in trains, waiting rooms, theatres, public transport, aeroplanes, offices, schools. Altogether this tip of their iceberg costs trillions of dollars worldwide. And that's ok. Because that’s NORMAL. But when we need a wheelchair, the only chair we will use in public, it is suddenly too expensive and we will have to go on the waiting list.

I said to the train driver who was putting out the ramp for me to get on the train. "They should get automatic ramps." He “Oh no that would cost too much." Me "Well get rid of the seats! They cost thousands upon thousands. I bring my own chair so get them to bring their own chair!!!" He giggled as if I was talking nonsense.

That is Ableism. That is why we do not function well with our "impairments". And what IS normal and who got to decide what normal is anyway? The people in control, the men over the women, the white people over the black people and the “normal” people (who had physically built the world to exclude us) over the abnormal people.

For too long we have tolerated this and still tolerate this. We need a united front in the rejection of Ableism to get rid of it. While it is only a few of us fighting Ableism we will be pointed out as the "bitter twisted cripples" as opposed to the "sweet disabled people who are sooo grateful and lovely". Too many of us are too oppressed or frightened to rock the boat yet.

When the new generations of feisty aware crips and non-crips come on things will gradually change. But people will have to die and then their kids and their kids will have to die before Ableism is eliminated. We must gradually educate out and fight out and breed out the defect that causes Ableism!!!!

We must all make a stand. Even if it is only in small ways. Have it YOUR way :)

Saturday, 2 November 2013

30 Days - A Challenge

A Post a Day for 30 Days. Samantha is doing it and challenged me to revive my blog. I have missed one day but will pop an extra in to make up.

Here we go:

I feel good lately. The sun is shining and it's getting warmer every day. My best time of the year. I don't feel like writing about the problems of Ableism or the shitty system (same same).
Since I have written a post here I have been doing lots of nothing and then lately lots of something. We'll catch up on the "nothing and negative" later. Present and Positive for now, or as the fancy takes me.

The Bromeliad Society of South Australia. I have joined. Just a hop, skip and a jump away and meets monthly. Quick meeting and then down to the business of Afternoon Tea which is always yummy with the AT people always putting on great stuff! Then the Drawing of the Raffles. Members bring their excess broms in for the prizes, tens and tens of them. So one has an excellent chance of winning something. And then there are those who win something and give it to me cos I am such a sparkling personality. I often look like a Bromeliad bush travelling on the way home. I am known as "Trouble" there cos at the second meeting I brought up the problem of there being no crip toilet and the nasty little step. Adam the President is now always checking during meetings to see if I want to say anything or have any points to raise, cheeky man!!

But the toilet. Yes there was one but no sign on it and Peter the VP didn't even realise it was there!! It was, but it was total crap. I hear it's fixed now and only took a few months (suffer in your jocks Sam). People keep asking me what it's like. I say I haven't used it yet. They are busting to know. Must have a look next time and perhaps even a pee! The step is ramped after initial reservations by the Landlords about "people" tripping over it. Cos I guess they "got" over it.

It's great fun and my Brom collection is growing and the back garden and carport are being transformed. I am spending time with a great fun bunch of people and have some good laughs and learn stuff. After the Raffle we have a Talk or Demonstration or Workshop and look at plants people have brought in and the WiseandOldies rattle off long names. Love it!

My Vege garden is going like a bomb. I have had the dirt paths in my garden paved using my Self Managed Individual Funding $$$ to pay for it. It has always caused problems with getting bogged in dry or wet and tracking in mud and leaves. So it was a disability related need so my request to spend SMF $$ was approved. This is such freedom to get around the garden easily. Photos later.

Feeling good.