Wednesday, 5 August 2009


goes a long way. Friends have been saying "you haven't been blogging, come on".

So here I am. Still hibernating. Although I have come out of my cave for long enough to go to Sydney for 2 days of Strategic Planning for PDA. And ventured out for a few meetings.

Got excited the other day when a bunch of coincidences happened. My friend Gen came around and saw my new vege gardens and told me that a friend of hers is making them now, Buckos. I said that's where I got them from! Then as I was seeing Gen off I checked the letterbox. In it was a special offer of bargains from Buckos to existing customers. So I rang up and ordered another 1.8 metre bed and two more of the round "herb" pots. Steve was pleased to hear from me and delivered them on Monday.

I was seeing my vege garden fill up (it's so satisfying) so now I have some more space. Lots of self sown lobelia seedlings are coming up in the vege garden so am transplanting them around the garden. Love free seedlings.

Facebook has been keeping me amused when I am tired. Have started Farming on Farmville and Farmtown. check me out on Facebook - there's a link here on my blog and join me in farming and be my "neighbour" (I need more neighbours!). It's fun seeing as I can't do real farming. For a long time I have been looking forward to technology setting us free (virtually) of bodily constraints. Now it's here and it's fun. Back to harvest my soybeans.

see ya all soon!

Monday, 29 June 2009

sleeping - hibernation

well that's what I feel like doing. I have been sleeping a lot so nothing much to blog about. Have been getting into Facebook and finding people I know. Playing Bejewelled.

Housework today with my support worker. That's it really. Just keeping warm. Oh, the new heater for the bedroom works a treat. :-)


Saturday, 27 June 2009

Misty Moisty Day

Had a busy day today (well compared to when I sleep until 3pm). Really had to go and give a blood sample at the QEH so that they can test to see if the inflammation is abating and if my liver or kidneys or red blood cells are getting wrecked by the medications. Had been trying to get there all week but it has been raining a lot or I have been sleeping.

Was good to get out. A little sprinkly rain for a start, a misty moisty day. A two stop train trip and then a walk (wheel) to the Hospital. Went into Lizzy's cafe and had some yummy cauliflower and potato soup. Gave blood. NO WAITING. Must remember that Fridays are quiet as I have to go weekly for 5 weeks.

Then off to Bummings and Havy Normal to look at heaters. Bought one and carried it all the way home with it sitting on my footrests. Put it together and got it working. It is a tall oscillating one with a timer and a remote control. For the bedroom so I don't lie in the freezing cold if I fall again.

R came around and made a tasty stir fry including some bok choy and broccoli from my garden for tea and then went home after a yak.

Nice day.

Thursday, 25 June 2009

Gina, at last your questions answered!

G'day Gina and all,

I hadn't forgotten you. As it's while ago this is what you said/asked in response to my post

Gina Wilson-Burns said...

I have been thinking about this one a lot, and coming back and re-reading it often. The more I think about it the more it makes sense.

As a mum of a 5yo boy with profound, multiple disabilities I am becoming more and more peeved at the Carer term. I have yet to send in my resignation as a carer to Mr Rudd as, at present, the $50 a fortnight does come in handy - goes some way to offsetting the $68K p.a. shortfall we have as a result of our child having a significant disability.

But, and this is where I would like to hear your opinion... What if our son (and every other person who 'qualifies their carer' for carer payments or carer allowances was actually provided with a "disability allowance" or "disability payment" until they turned 18 and then were privy to the disability support pension if they qualified or needed. As his parents we would be responsible for using this money appropriately - would it need to be more formal - I don't want to write off my parental rights and responsibilities - or be denied them just because my child has a disability - so this is the area I get most confused.

Get rid of the Carer Allowance and carer payment entirely. That way there is no "carers" just people who care or people paid to care. There are plenty of people happy to take the "carer" payments but would find taking a "disability payment" slightly confronting (this is good i think).

At this stage I do feel i need to provide a voice for my son but I really really really abhor the term carer - I am just a mum.

What I think is quite simple Gina and is probably where you are basically at. We are all people. Children are looked after, provided for and decisions made for by their parents until they reach the age of 18. Adults look after themselves, provide for themselves and make decisions for themselves. Regardless of race, gender or ability this is how it is for all people.

But as we know you get turned into a carer cos your child has a disability and I turn into a person with a carer cos I have a disability. (I don't have a carer but the assumption is there).

A "Carer" is a person who assists, looks after or cares for someone they are related to or "care" about for no money or a small pension. A "Support Worker" is a person who is paid a wage to assist a child or adult living with disability. We should have parents, spouses, relatives and friends around us as is normal in life and Support Workers to assist us.

Parents who have a child with a disability should get a Disability Allowance (as you said) to assist with anything that levels the playing field for their child and themselves. It should be assessed and automatic and never dependent on funding mingyness. Any parent of a child living with disability must have the same (no more, no less) responsibility for that child as for a child not living with disability. They must be allowed to be a parent and not labeled as anything else

When the child reaches the age of 18 that Disability Allowance is passed into their hands for them to manage and make their owns decisions as adults. This new adult may also then be eligible for a Living Support Allowance which provides for ordinary living needs, food, shelter, clothing etc should they be unable to earn a living for themselves.

IF that adult person with a disability cannot manage their own affairs, financial, personal or otherwise then guardianship must always be applied for and legally granted if needed. NO ONE should be allowed to have informal control or decision making powers over any other adult because they are related by blood or love (just because that adult needs different assistance than usual people). NO ONE!!!

Also the Allowance for the costs of disability must be over and above Living Support and never means tested. Ordinary living support is to be provided and paid for by the parents of their children with a disability as is the case with all children.

We should never be forced into dependency on others as adults. I mean dependency on an unpaid 'carer'.

Everyone in this world is interdependent on other people but people living with disability are forced to be DEPENDENT on others for their whole lives. Parents are forced to care for their adult children living with disability. This must not continue.

It's simple as we know. People living with disability must be afforded the same means and rights as all people.

Hope that clears up what I mean at least Gina. I have been reading quite a few blogs written by parents of children living with disability lately and I must say I am heartened by the fight in you all. The fight in you for the RIGHTS of your children to live an ordinary life. Go mums and dads - more power to you. Use it right for all our sakes.


Wednesday, 24 June 2009

My New Vege Garden

First the old one

It comprised three 1 m x 2m concrete raised ponds originally used for keeping of water plants for sale (when this place was a nursery). They stood about knee height and great for me when I was a wobbly walker. Only walking space down each side tho - no wheelchair access.

So they haven't been used for 4 - 5 years since I have been using the chair. But then came:

That was temporary until Finally this is it now. Yay!!

This has happened over the past 8 months. Roy smashed up the old concrete gardens. That was a helluva job well done!!

Some more from just the other day. Seedlings up. Easily weeded. :-)

It's all so fantastic. I love it and having been eating the produce already.

Tuesday, 23 June 2009

I sometimes hate titles

Well really it's hard to blog. Hard to do anything.

Crohn's sucks.

I am extraordinaryilyilyily tired. I have put on weight cos of the steroids which I am back on again again. They also can weaken my muscles. If steroids don't work then there is another drug they can try but that has risks for liver and other organs. Crikey.

I get stuck on the toilet and have to do extraordinary things to get off alone.

I fall again in the middle of the night - freezing cold, naked and with my thigh bent over an upright footrest and legs trapped under the other footrest. slammed shoulder and head into floor as I went down - ended up on my side. Jammed up against the bed and hanging off the footrest by my thigh. OOOOOOOWWWWWWWWWWWWWWWWWW. Can you picture that.

Anyway it was only about 12 minutes till two great ambos and neighbour M were with me. In my pain and position I had to instruct them how to turn my wheelchair on and turn the speed down and then drive the wheelchair out from under me while the other ambo lifted me a bit with a belt. Fark. But of course the wheelchair driving ambo drove it the wrong way and jammed me up a bit more. OOOOWWWWWW. Never mind they get it done and get me into bed and are respectful, careful, fun and not bad looking either.

M hid in the hallway for awhile until she was assured that my bone wasn't poking out of my leg. After the ambos left she stayed with me for nearly an hour to make sure I warmed up and that the shock settled.

12 minutes is a long time to shout OOOOWWWWWWWWWW a lot and contemplate my lot and my future. Scary.

That fall was last Wednesday night and I am still so weakened by it. I have been resting and getting extra support. Lucky I have been saving some hours up. I haven't been able to do work I said I would (just gathering and compiling some proformas and position descriptions and rewriting a bit). Too tired. Gotta save the arm energy for getting off the loo.

I am sleeping 12 - 14 hours a day if I can.

So that's the dark side sprinkled with bright bits of light.

Some good stuff now.

On Sunday T came round and we got a lamb roast going. Plus of course roast spuds, pumpkin, onion, and beetroot with gravy oh and brussel sprouts perfectly cooked by me YUMMMMMM. Marg came over and the three of us got tucked in. We all watched a movie that was a gift from a friend. Called "Once" and a nice simple movie to enjoy. We ate some chocolate and raved on. Had a good arvo.

Sitting around inside with the heating on while it rains and blows and sleeping all day are nice. Jimmy cuddles up to my legs when I'm in bed and Callie keeps my lap warm when I'm up.

My new vege garden is going well. Watch out for pics and the story soon.

Tuesday, 16 June 2009

Miss Molly

My Miss Molly cat (the 15ish year old one) has a nice warm coat of earth since last week. I had to take her to the vet as she had stopped eating and wasn’t at all well (she has had ongoing overactive thyroid problems) and the vet and I decided to give her a little help to go over the rainbow bridge to cat heaven.

I hate doing that and always feel like a hypocrite as I am not into euthanasia for humans (really only because it is the thin edge of the wedge and people like me will be in line for it later when someone decides MY life is not worth living). Ah dear!!! That’s life and death.

I really miss the old girl who used to go round shouting for food all the time.

Callie and Jimmy had a look at her and a sniff when I brought her home from the vet. I always let the other cats see the other one dead if possible to let them have some idea of where they have gone.

So Callie is top cat now. Except I am actually top cat. Callie says "well that's what you think!.

Anyway thanks to the old Moll I am back on the blog again.

Sunday, 22 March 2009

Be Very Careful What You Wish For!!

A couple of posts ago I said "I want my drugs back". Well after another bout of horrible pain and another 4 days in hospital, guess what? I have my Drugs back - yep back on the steroids! And they want to cut a bit of my guts out to fix the problem this time.

I think they are being hasty so I am in discussion with the doctors about this one. An abdominal operation will be severely debilitating for me and could put me out of action for weeks and could result in me losing independence in some areas for ever.

As far as I have read in the official info they gave me the first time - cutting bits of the colon out is not considered the way to go in Crohn's disease. Some other Inflammatory Bowel Diseases it does work with. Of course I asked why they want to do it but of course didn't get an answer that I can recall. Probably cos they have just sharpened their scalpels and want to test them out!!!

I have had the initial bout and then this one. I reckon my disease deserves another chance with drug therapy before they get chopping and I said so. I have an appt with the Gastro mob on the 31st so will let you know.

I got myself out of hospital as soon as they would let me as I am learning how weak I get if I have to stay in. So four days after getting out I am nearly back to strength because I am in my own home and been using my normal environment instead of being hamstrung and having to have nurses lift me etc. Yay - in control!!


I now have an email address that you can contact me on if you want to. See at the top on the right above the picture of Harry.

Sunday, 1 March 2009

Eliminate the Negative, Accentuate the Positive.

Most people with a congenital disability and many of those with an acquired disability are caught in a cycle of negativity. For example, from the moment a person with a congenital disability is born the general reaction to their disability and therefore to themselves is one of negativity. As babies, toddlers and children they may hear people saying things like "what a shame she is like that" or "it's a pity she survived". The medical profession will talk about them in front of them about their inability and their deformed bodies or minds. They will be paraded in their underwear and poked, prodded and operated upon. The medicos will be the "experts", the ones who know how wrong these children are, and they will say so. Often opinions will be expressed as to the capacity of these children to "perform". Doctors and physios will say "she will never walk, talk, read a book, laugh, respond to you, drive a car, get married, etc". They will use words like deformed, weakness, abnormal, twisted. Often these children will not be expected to achieve anything, they will be teased by other children, stared at in public and avoided by other people. This is a cycle of negativity. This negativity seeps through to the child's core and leads to them having a very low opinion of themselves. They may see themselves only as useless and a burden. These feelings and beliefs last their whole lives through. Our whole lives through.

People who acquire their disability later on in life face similar treatment. Their lives as a newly disabled person will be catastrophised by others. Because they had a "normal" start in life they may cope better. They may have established themselves and their self-concepts before becoming disabled and therefore keep some of their self-esteem. But this cycle of negativity will affect them too.

We live down to these ideas. We live with feelings of inadequacy and rejection. Even talented intelligent people who are successful feel this way. English Artist Simon Parritt wrote in "My Views on this Exhibition" "I fear, through very painful previous experiences, that just as my body is rejected despite my other attributes, so my art will ultimately be rejected because of its source. So I have, like an ever-trusting idiot yet again, put my belief in you not to invalidate me."

In the past, and I think it is still the case, people with disabilities are often seen and thought of as useless burdens on society. I know I used to think of myself that way and it made me very unhappy. It has taken me many years of looking inward to discover who and what I really am. I have had to work hard to throw out all the old ideas and beliefs about myself. I used to believe that I was fairly useless. That I was a nuisance. That I was slow and weak. Lots and lots of negative stuff. But now I see the positive things about myself. I don't actually have to DO anything to PROVE myself. I no longer bust my guts every day to measure up to some normal standard. I have different talents and skills of my own that an able-bodied person will never have. I can see myself as I am and not compare myself to the norm. It has been a very liberating experience.

A man called Oakey Anderson of the Institute of Future Studies in Sweden said that for a country to be successful economically in today's world it must become a C SOCIETY. The four Cs. Our society must focus on Communication, Cognitive Capacity, Creativity and Complexity. I thought to myself "Well there is a society with a place for People with Disabilities".

We have heaps of untapped talent in all the four Cs. We have many alternative ways of Communicating - sign language, braille or perhaps just with our eyes if that's all we can move. And as for Cognitive Capacity. Of course there are lots of intelligent people with disabilities and also DIFFERENT sorts of intelligence. We have proof of that over the past two days. As for Creativity, well what a creative lot we are. We have to be very creative in using limited services, equipment, access and transport. We all achieve things that we would not be able to do if we tried to do them in the "normal" way. You should see how I pick up a heavy rock in the garden using my limited strength - it's a very complicated manoeuvre but it gets the rock where I want it! That leads me into Complexity, the fourth C. Our lives are very complex. In fact you could say that hardly anything is Simple for us. We could ask Sue who organised this conference how much more complex it was than if it had been a conference for non-disabled people. But we won't ask her cos it would take hours for her to explain the complexity.

So according to Oakey Anderson's theory we could think of ourselves as top notch. We could make this country successful economically if they would let us. One man who did let people with disabilities help him become rich was Henry Ford. He wrote in 1922 in his autobiography My Life and Work...

"I believe that there is very little occasion for charity in this world - that is, charity in the sense of making gifts. Most certainly, business and charity cannot be combined. The purpose of a factory is to produce and it ill serves the community in general unless it does produce to the utmost of its capacity. We are too ready to assume without investigation that the full possession of faculties is a condition prerequisite to the best performance of all jobs.

I am quite sure that if work is sufficiently subdivided - subdivided to the point of highest economy - there will be no dearth of places in which the physically incapacitated can do a man's job and get a man's wage. For instance a blind man was assigned to the stock department to count bolts and nuts for shipment to branch establishments. Two other able-bodied men were already employed in this work. In two days the foreman sent a note to the transfer department releasing the able-bodied men because the blind man was able to do not only his own work but also the work that had formerly been done by the sound men.

We have experimented with bedridden men - men who were able to sit up. We put black oilcloth covers or aprons over the beds and set the men to work screwing nuts on small bolts. This is a job that has to be done by hand and one which 15 or 20 men are kept busy.

The men in the hospital could do it just as well as the men in the shop and they were able to receive their regular wages. In fact, their production was about 20% above the usual shop production."

So if Henry Ford knew how productive we were 100 years ago why is there so much negativity about us. The acronym for Cycle of Negativity is C.O.N. CON. We must stop letting others con us with their wrong ideas about us. We must stop conning ourselves with old wrong ideas - ideas and beliefs that weren't even ours in the first place.

We know how hard we work and what we achieve with our disabilities. We know ourselves better than anyone. Better than Support Workers, Occupational Terrorists, Physios, Doctors or Service Providers. Certainly better than the people who shun us.

About ten years ago I was asked to do a workshop for people with disabilities who were considering entering university. I was told that the prospective students wanted information about how to fit in with the nondisabled students. My first thought when I was told this was "crikey, why is it that these people with disabilities think that they have to fit in with the crowd". So I changed the title of the workshop. I called it "getting the crowd to fit in with you". I told them that they don’t have to fit in with the crowd and that they should be themselves. I told them to help the other students to understand them so that the non-disabled students could fit in with the students with disabilities.

I told them how I used to have very strange beliefs about nondisabled people, able-bodied people. I used to believe that able-bodied people could do everything, knew everything and didn't help me because they didn't care. I believed all this stuff because of the cycle of negativity that I had experienced as a child. It was the able-bodied people who knew and said that I was wrong and crippled. It was the able-bodied people who tried to fix me. I didn't get any say and no one asked me what I thought. I didn't know how to make myself like them. And if they failed to make me like them then I believed that it was probably my fault. They seemed to know everything about me and repeatedly told me what they knew about me. When I didn't get the help I needed I thought it was my problem because it was my fault. I put able-bodied people up on a pedestal. The trouble was that they often failed me. I couldn't understand it. I thought it was because they were being selfish and mean. I became very hurt and eventually very angry.

So I undertook many years of psychotherapy to make myself feel better. I didn't know about the cycle of negativity then. I didn't know that my thinking was wrong. During that therapy I discovered a few facts. Three of the most enlightening facts that I discovered were: able-bodied people can't do everything, able-bodied people don't know everything and that generally able-bodied people don't help me because they don't know what to do or what's needed.

Before therapy I compared myself with able-bodied people. I measured myself against what they did. What a crazy thing to do. It would be just as sensible to compare an ordinary able-bodied person with an elite Olympic athlete. Does an ordinary able-bodied person get put down or put themselves down because they can't run a four-minute mile, complete a perfect high dive or lift 200 kilos? No of course they don't! Because that would be a crazy thing to do. I know able-bodied people don't have to hang around with elite athletes all the time. Most of us do hang around with able-bodied people all the time but we don't have to compare ourselves with them. We don't have to measure ourselves against their achievements.

Since therapy I have taken myself in hand. I've stopped waiting around for the ablebods to act or say something. I know what I can and can't do. And if I think I can't do something I at least have a good try at it first. I put my own value on myself. Everyone is valuable. Even Alice a person with a severe disability who can't move or do anything for herself is valuable. She provides an opportunity for someone to care for her, for someone to learn compassion and tolerance and patience.

I believe that the world is made up of individuals who are all different from each other for a very good reason. It's so we can learn from each other and have variety and excitement in our lives. Crikey it would be boring if we were all the same. Imagine a world without Elle MacPherson or Stephen Hawking or even Quasimodo. Anyone who has ever watched Quasimodo couldn't fail to see that there was something to learn from him, something that he could share with the world.

The theme of this conference is "Nothing about Us Without Us, Empowering Ourselves and Others". This is what we must do. We must be involved in things that affect us. In particular I'm talking about things in relation to our disabilities, about what we need to be effective and function in the world. So, that is the ‘nothing about us without us’ part. Then the next bit is; ‘empowering ourselves and others’. We can empower ourselves by throwing off the effects of the cycle of negativity. We can stop believing the rubbish that society tells us about ourselves. We can look at the positive things about us. We can think about the things that we do achieve and how we overcome the barriers that are put in front of us by society. We can celebrate our abilities. We can and must believe in ourselves because we are doing it. The proof is there every day. We can celebrate and knowledge the achievements of our friends who have disabilities.

We must also empower nondisabled people. We must set them right about us! We must tell them who we are, what we are and what we can do. We are the experts after all. How many times have you been let down by the knowledge and advice of an able-bodied person? I know I have many times. I don't want to be let down any more so I tell them what they need to know so that they can help me properly. We must stop thinking of ourselves as inferior and able-bodied people as superior. Able-bodied people are not superior they are just different. They are also ignorant about our true selves. We are the ones who can help them understand and know truly. This is what I advised those prospective Uni students years ago - help the crowd to fit in with YOU!

Another Englishman and artist Niel Marcus wrote in "How it feels to Exist"

"The world has bits and pieces of uncertainty concerning the handicapped, and that is why it is good for a handicapped person to say "hi". I have this strong feeling that the world needs to be shown some thing... the kind of education which is a human revolution. I have seen people wonder, "What should I say? What should I do?" These are very natural questions to ask. In the area of the handicapped it is the handicapped person who is going to settle all doubts and lead the way. This is why I say the world needs lo know that handicapped people exist. The world has something very special to learn, something very relevant to living."

Pictures have been running in the background throughout my talk. The first ones were from back in the 1800s and they continued right up to the present day. The photos in the beginning show examples of the negativity that surrounded people with disabilities. Some of them show in startling ways how our dignity was taken away from us when we were paraded up and down in long callipers. Two of those photos show pubescent young women with their developing breasts naked to the camera. The photos show restrictive and cruel equipment. They show wards of metal cots imprisoning children with disabilities in institutions. However as we moved through the photos we saw things looking better in the equipment department and perhaps even in the way we are treated. We have come a long way physically. Progress has been made.

We must come out of the dark ages in the ways that we think about ourselves and in the ways that we allow others to think about us. We must educate these people about us. We must set them straight just as they try to set us straight physically. We must embrace our wholeness because we are whole people. We must help them. As Niel Marcus said "the world has something very special to learn, something very relevant to living”. It's time. So now let us not be ever-trusting idiots yet again. Let's take charge!

© Glee 2004 May be quoted with acknowledgment.
Originally a conference presentation.

Saturday, 28 February 2009

I want my drugs back!!!!

Oh dear. Here I have been riding on a steroid induced high for a couple of months. Have been gradually weaning off since a month after I started them. On doctors advice I have been slowly weaning off the Prednisilone at 5mg each week. A friend warned me that I would hit a low when I stopped and it was a helpful warning.

I have been slowly coming down (instead of skipping around saying "isn't life wonderful" all the time) over the last three weeks and slowly getting more and more tired. What a total bummer!!!! Friends say "Why can't you stay on them?". Naa, very bad in the long term in many ways.

Now one would have thought that I would have been blogging madly while on my high. Nup - too busy eating, gardening, talking nineteen to the dozen and generally cruising on high speed happiness.

Anyway I just had a thought when trying to work out whether to go to bed early cos my head is nodding. The thought came to me when I was reading Heike's blog that shows her daughter using a highchair as a showerchair. Well that's what it looked like anyway.... very creative. It reminded me of a paper I wrote for a PDA conference a few years ago. I will post it here tomorrow. It's a bugger that often conference presentations are only done once and only a relative few ppl get to hear them. So now you can all read this one for yourself.


Thursday, 29 January 2009


Here I am with sweat running down my back, neck and face. It has been over 40 degrees centigrade here for the past 3 days. Yesterday it was 45.7!! And this is going to continue at 40, 39 or 38 degrees for the next whole week!!!

I don't have cooling airconditioning (don't like it and don't really need it) and just use fans to move the air. If you haven't noticed I do have a garden with many large trees which generally keeps my house relatively cool even on the worst days. But this week the house is going to heat up. It's 33 in my back room today which is the most heat vulnerable of the lot and the room I spend most time in. In the core of the house it is about 30 degrees at the moment. I keep the house shut up and all the blinds down and all doors shut. This helps a lot but when heat is sustained the house does eventually heat up. Ah well I am a true blue Aussie woman and I can take it.

What I didn't think I could take was the diagnosis of Crohn's disease that came after being in hospital for week after a month of terrible gut pain. And the name Crohn's is not on. It reeks of old and decrepit and I am neither.. It reeks of a cranky old crone and I am not that either (some may argue)..

This is what I wrote to friends about the whole episode "Not to put too fine detail on it all I had been having bowel problems with awful pain getting worse for a month and going to the doctor but not getting better.  I had been having on and off problems for the whole year actually and was getting slowly run down I reckon.  I was being too stoic but got to the point of calling the ambulance for myself at 2am on the night of the meeting 5th Dec that Wayne said I didn’t sound too good at (I sure didn’t Wayne!!!).  The upshot is probably Crohn’s Disease.  Now ain’t that a shocking name. Although I was very crook and weak as a kitten I feel terrific now – am on steroids for a couple of months to get it all under control and they are making me speedy and with a ravenous appetite!!  Unfortunately they are not the sort of steroids that grow muscles as I did inquire of the doctors as I do have Spinal Muscular Atrophy and was hoping for big muscles – damn.  And also a Immunomodulatory drug (long term or forever) to moderate my immune system which has gotten too keen and ends up attacking the colon and making it inflamed causing blockage.  As you can see I have learnt a lot in 3 weeks.  It’s a chronic condition and can recur.  I am however thinking very positive and determined that it will be mild and hardly ever bother me!!!!"

I must say that at first diagnosis I had thoughts of driving myself (in my chair) in front of a moving train. Now that was a desperate over reaction because I had known two abloid friends with Crohn's 30 yrs ago and they suffered very badly and I thought that with SMA and Crohn's that would be too much for a bear to bear. BUT, firstly, I would not inflict my death on an innocent train driver and anyway I won't let a little medical condition get me down and also the treatment has improved. Now, the treatment which is steroids for a period until the colon inflammation subsides - now dig the "side effects", aching bones, sore throat, flu like feeling, dry cough, rash and to top it off the best of them all (remembering that SMA Spinal Muscular Atrophy means ALL of my muscles are weak) weakened arms and legs!!!! Now is that fair!!!

Anyway I am rolling through all the side effects and they are slowly going except the weakness so far. I only have 5 weeks left on the steroids so things will improve more.

As I said I spent 3 weeks in hospital which included xmas day and this is what wrote to friends again cos it wasn't all bad and I did have a good rest "Funnily enough I had an excellent xmas day in hospital with some extra treats in my meals and a friend came to visit in the afternoon.  We went out into the lovely garden at the QEH on a warm day and got stuck into a bottle of Sparkling Burgundy (well I did anyway, she had one glass as was driving!) and yakked and partied a bit.  I weaved my way back up to the ward in time for another lovely meal and a yak with my room mate Betty.

The QEH (Queen Elizabeth Hospital Sth Aust) is great and I was well looked after.  Only two bed wards or single rooms in a new wing, helpful lovely nurses, good food and clean sheets every day.  Loved ticking the boxes every day to order meals and breakfast in bed!  Rest and recovery at last.

What’s more I came home to my first ever DSP bonus in my bank account.  WOO HOO!! Ain’t life grand!

To change the subject the weather here has been perfect – anywhere between 24 and 30. Been doing some gardening, weeding, pond maintenance and tidying up. Things are looking good. EXCEPT. Found out that the reason my creeper on the side fence outside my kitchen has been going white over the past couple of months and then my tomatoes and then while in hospital my herbs and other vege plants IS BECAUSE the old bastard over the fence has been spraying my fence creeper a pink Tecoma and Honeysuckle (cos it pokes over the top of the fence) with HERBICIDE!!!!!!!!! WTF!! Heard him telling his friend that he sprays his garden with “a two pack spray to kill all the weeds”. Twice now I have found heavy white splashes of a milky looking liquid all over my kitchen windows and wondered where it came from. It’s him shooting his poison onto the creeper over the fence and a full three metres onto my windows!!!! So I went and saw him and asked him if he had been spraying my creeper and he owned up to it SO told him he can only cut the offending bits off and that he can’t spray my creeper and that he has been poisoning my vege garden and right over to my window and in my open window. I have cut the dead/white bits off, fertilized and watered so I hope everything recovers ok. I have taken photos of it all including the poison splots on the windows so if he does it again I will ring his landlord the Government Housing Authority and then next to Court. Goodness me I abhor plant haters!!!

I have been taking it easy for the whole of January and doing a stock take of my life and how I live it, so changes are happening. I am feeling very positive and enjoying myself going out with friends. Off to the Zoo at night tomorrow with Mags and her mum Kars - should be fun and hopefully cooler at night too!

I have taken some new photos of the garden again so check out the photos link on the side column here. I have planted some foxgloves, silver cineraria and campanula plants and forget me not, basil, spring onion, chilli and tarragon seeds and have been dosing the soil with soil wetter stuff so that it absorbs the water instead of running off. It works a treat. My lettuce grew marvelously while in hospital but I can't eat it as I am a low residue diet for awhile. So the radishes and spinach are being given away and hey the tomatoes didn't get to produce before being poisoned and are now recovering hopefully in time to produce some lovely tomatoes when I am allowed to eat them!! Soon I hope.

I have more to write of an activist vein on my experience of hospital and since in relation to having a disability... but later...

Thursday, 15 January 2009

Here I am

I have been sick. I have been in hospital. I am ok but am still struggling. I will write more on my stuff later and catch you all up and answer your queries from when I was absent especially Gina

I have been compelled to write this post today to repost Dave Hingsburger's post of yesterday from his blog "Chewing the Fat". I am appalled even tho I know this sort of thing does happen. Here it is in full.

Barry Baker.

Remember that name.

Let me tell you a bit about him. He was this 59 year old guy who lived a lone in the home he grew up in. His parents passed away. As a batchelor in his home, it grew into a state of messiness that is common for college kids and me on busy weeks. He'd had a series of health problems, he was overweight, he'd had a couple of hip surgeries and he walked with crutches. Barry, though, wasn't one to sit alone at home. His life was as exactly full as he wanted it to be. He took a cab every day to his workplace and every Sunday, like clockwork, he took a bus to his favourite pub. He was known in his neighbourhood and respected as a man with an intellectual disability who was making it on his own.

Then on November 29 of last year, a few weeks ago, he suffered chest pains. Wanting to live and knowing what to do, he called emergency services. The operator stayed on the phone with him as he waited for the ambulance to arrive. He collapsed and the operater listened to every sound hoping to hear his door open and help arrive. Well, she did hear everything, and what she heard astonished her.

The two ambulance attendants saw this big, fat, disabled guy, living in a messy home. They stood talking about him and decided that he wasn't worth saving. So they stood there and let him die, deciding to tell everyone that he was dead when they arrived. One more cripple out of the way, one more unnecessary life done away with. One more of us gone.

The operator immediately handed in the tape. Charges and investigations ... blah, blah, blah ...

A note of fear creeps into my life. What would ambulance attendants see if they came for me. A fat, disabled guy, in an apartment full of wheelchairs, long reachers, and grab bars. What value would my life seem if it was just my body they saw - not my connections, not my routines, not my hopes and dreams.

Sometimes there seems to me to be an immense gulf between we with disabilities and thee without - sometimes disphobia seems to be such a dark and evil prejudice.

Today, I mourn Barry Baker.

I tell his story here.

I will tell 5 other people his story.

Barry will live today, here in Toronto.

I hope you will join me and bring Barry's story to others, begin a conversation of the dangers of disphobia and the need for us to be alert to the fact that those who are supposed to save us, may indeed kill us, that those who are supposed to care for us, may indeed hate us, that those who we are supposed to trust - can't be.


A Victim of Bigotry

posted by Dave Hingsburger at 6:32 AM on Jan 14, 2009