Some people can’t conceive of what it is like to have the policies of politicians who have little concept of living with a disability continually threatening to erode your already meagre standard of living.
Six years ago I fell into a clinical depression partly over this very issue. It was awful! I couldn't laugh, cry or SLEEP for 4 1/2 months!!
Just prior to this time, I had been having a type of energy healing from two of my friends. The word “abandonment” kept coming up – and neither they – nor I – recognized it was what it was – I was feeling abandoned on behalf of other people with disabilities as well as myself. I was O.K. compared to plenty of people who were not. The government had cut funding to numerous little advocacy organizations (14 to be exact!) a month after this government was elected!
Now, a number of us worked voluntarily, long and hard, for these little organizations. What the government had done, in effect, was take away our jobs. (What the government did in this time in office was even worse than this. They cut funding to disability organizations to the tune of $50,000,000 in the second-last year of his office, I was told by one of my carer’s. I wonder if the years before were as bad…
I, for one, regard my pension as a social wage, and even though I could wish it took my disability and the extra costs that brings into consideration, I feel privileged to be able to work in the community and not in a sheltered workshop.
Be that as it may, it was around this time, I remember now, that I started, what I now realize, was a “stress cough”. I didn’t take much notice at the time, and this was where I was very foolish. But I was “enjoying life” - studying, working, taking part – with about eight other people with disabilities - a documentary about sexuality and being a member of the “Friendship Group”.
The “Friendship Group” was formed when a group of about 12 people with and without disabilities was approached by a worker doing his Master's thesis on the subject and nature of friendship for people with disabilities. He had been a worker in various positions for one of the major organizations dealing with all aspects of our lives and had observed the lack of friendship and bonding between people with disabilities in the institution for which he worked. He approached a staff member of the organization, who approached a group of people he knew had thrown, or were trying to throw, off the effects of institutionalization and take charge of their lives to the best of their capabilities.
The processes and the cohesion of the group attained brought up a “lot of stuff” for me that I wasn’t able to articulate because I didn’t know quite how to do so. It made me question the wisdom of my lifestyle up to then – of marrying a “non-disabled” person, for example. My mother used to tell me to tell him to tidy the flat, not in the least realizing that 1) I used to feel distressed that I wasn’t doing this; 2) That it was almost impossible to keep a small area tidy, given the fact that neither of us are particularly tidy in the first place, and that the flat used to get untidy because we were involved with many different organizations and had many diverse interests.
This situation was also not helped, I now realize, by us trying to live and run home businesses from my three-roomed accommodation behind my parent’s home, without sufficient room or personal support worker hours.
As intimated above, the flat was always cluttered, not conducive to encouraging a feeling of ease in us bringing clients onto the premises. As Robert’s massage workload grew, so did our underlying tension, I see now. And when I was starting to counsel other people with disabilities the situation was made worse. The flat could hardly contain one motorized wheelchair, let alone two. And both sets of clients need privacy, a courtesy we couldn’t always give them.
When I add to this the fact that my mother had, just prior to this period in our lives, stopped giving us our main meal because we were becoming more and more interested in eating organic and vegetarian food, which we consider as important as a health insurance, I don’t wonder we were strained. And all the more so because we didn’t recognize the gradual changes in lifestyle were making life very difficult for us, to say the least.
At the same time, listening to other group members’ stories made me realize how “undervalued” people with disabilities are in society. I had been brought up in a loving extended family and had not long been “out”. In other words, I didn’t have any friends outside the family till my late twenties; I hadn’t used an electric wheelchair before 1984 - when I was almost 35. (An interesting sidelight of this is that I had already met and slept with three guys, the last being Robert, who I had met through an advertisement in 1984 and who is now my husband of 11 years – before I brought an ice-cream for myself.)
It made me realize how much people with disabilities are constrained by lack of governmental funding for recreational – especially relationship – options – with each other and with able-bodied people. And now the government was trying to close down little advocacy organizations that could keep this issue in the forefront of policy makers’ minds. No wonder I was getting close to breaking point!
But, I kept telling myself; we expected cuts, didn’t we? We just had to “learn to live with it!” As people can see, I wasn’t much of an activist in those days. But I hadn’t realised how much I was changing. Working for various organisations I had been learning what concepts like discrimination were about and growing in spirit. But with the tenor of the government at the time, what could one do?
Anyway, when I got really bad, my poor husband almost went mad himself trying to cope with me. I had been the outgoing partner in the relationship for the past 12 years. Now I was getting panic attacks and clinging like poison ivy...
And the Naturopath and Doctor I went to at that stage certainly didn't help. The Naturopath was so expensive she made me much worse. She had told a friend of mine that she would treat me for $30.00 a time. She did not say that she would put me on numerous tablets to complement the colonic irrigation I was having at the time – and we all know what they cost.
What my friend didn't tell me was that she would present me with an ever-increasing bill every time I went - to pay her back when I could! And that her husband, her admin assistant, would keep commenting, in my hearing, that people wouldn’t pay their bills on time.
When the amount got to $450.00, I said enough, paid her all my savings, and managed, I don't know how - because she was a very sure-of-herself woman and I was in a very vulnerable state - to quit.
I’m sure, looking back, that this lady and her husband just didn’t have any inkling at all that their treatment was not the best thing for me at the time. They were just two fallible people doing the best they could with the knowledge they had. From this distance, looking backward, all I remember is their genuine desire to help and succour.
And they didn’t condescend, like so many people that don’t have much to do with people with disabilities, do!
However, I now believe she treated me with a totally inappropriate therapy. Under her guidance I undertook the colonic irrigation, which is a therapy meant to clean out all the little folds and pockets of the bowel – only it seems to me that she prescribed the emetic that was the chief medication for this therapy far too long! I had to drink it every day for five weeks! I lost SO much weight at this time that I really believe it was made my mental state worse instead of better. People say that an unquiet mind can stress the body into illness, I believe losing too much weight too fast (and I was about two –two and-a-quarter stone lighter than I am now, in the first place) stressed my mind, instead of other way around. Three or four days at a time on that stuff would have been enough, esp. since I DIDN'T have cancer, AIDS, etc. like a lot of her patients.
I can now admit that I was doing the wrong thing by myself in the first place – keeping on going to someone I really could not afford, agreeing to a treatment that was patently too drastic for myself at that time.
Be that as it may, by this time I wasn’t only having panic attacks. I had slipped into, what I recently discovered, was a clinical depression. This brought in it’s wake, a terror so real, so all encompassing that I wonder I lived through a day of it – much less four and a half months. (And it was a real panic-terror, which I learnt only this year can be a symptom of clinical depression; fear I can live with: my stomach clenches almost every time I have to go down a steep gutter-ramp in my motorized wheel-chair.) I now realize that the terror was masking anger, an anger so deep and so corrosive I couldn’t even acknowledge it. It was at this point that I stopped sleeping altogether – or so it seemed to me.
I also now realize that the anger was in part, coming from a sense of injustice, but, too, I believe I had “picked up” on other people’s anger – I am thinking of one worker in particular – and that I was reacting to old “patterns” – the pattern in my psyche which comes straight from the “medical model”, which says, alas! that people with disabilities are only fit for pensions, and therefore will be “looked after” by the populace at large. Now the system seemed to have swung the opposite way so completely, it felt, unconsciously, to me, like the culture, or at least its representative, the government, was rejecting us “lock, stock and barrel”.
And then the poor doctor tried to pin my problems down to sex, or at least my relationship with Robert. She had got me to list my issues, and I had put “money” at the top.
She didn't hear me when I said, ineptly, it's true - that it was a far greater issue in my life than my relationship at that time. I didn't even think of even mentioning attendant care! And we didn't even THINK of an advocate...
I know now that if she explored my first issue thoroughly, she would have discovered that it wasn’t really money about which I was worried. It was more that I had realized, unconsciously, that my parent’s house wasn’t really working for us any more and that we needed more help. If I was my client now, I would recommend we see a financial counsellor, the accommodation people at DHS or SCOPE, and so on.
And I would listen, listen and reflect; if more of this had been done I might have been able to discover or uncover what I needed to find the solutions to my “problems”…
I remember distinctly spending night after sleeplessness night at this time calculating, again and again and again, how much money I would need in the bank so that the interest could pay for extra attendant care. The term “user-pays” had become the catch-cry in disability services at the time, you see… I had chosen the wrong therapist for myself again. One who had a deal of compassion, it’s true, but no knowledge of the disability field…
Anyway, I got so confused about my relationship with my husband about this time that I didn’t sleep with him for over a year. As you can imagine, this did not help matters much. Certainly we had issues, but had other things been equal, we would have been able to work them out together, as we had done in the 11 years previous to my breakdown.
When the Doctor kept telling me I was afraid of my power, she was way off-beam. Way off. What I was afraid of was losing the power I already had. And I was afraid of this for other people with disabilities too.
I got so confused at one stage, that in one breath, I used to beg my husband to put me in hospital and the next breath, beg him not to. I had let the Naturopath make me so fearful of allopathic medication; I wasn’t taking any drugs at all. No wonder I wasn’t sleeping!
I wasn’t the only one that was disillusioned, shattered, and heart-broken. I’ve heard other stories…
Anyway, back to my saga.
As already mentioned, my husband at this stage was so stressed himself that he got angrier and angrier and the angrier he got the worse I got - but we managed - God knows how - to stick it out. I knew our deep down AFFECTION for one another would see us through - when we started meditating together and seeing our Transcendental Meditation doctor six months after I got really sick - but he wasn't so sure...
This doctor not only got me meditating, but also got me on 15 mgs of Valium and 50 mgs. of Sinequan, a very mild antidepressant, a night, so my poor body and mind could rest until the meditation ‘kicked in’ and stopped my mental monkeys from running amok. (I still take the Sinequan regularly 25 mgs, and 2mgs of Valium about 2 or 3 times a week.)
About this time we felt we had to move to the country for a while just to get away from Melbourne and because the Housing Commission had said they could house us in Wangaratta. I also felt very strongly that I should move from the flat attached to my parent's house where we were living - the government had just brought in the sell-your-home-to-go-to-a-retirement-village and nobody told me this didn't apply to parents of people with disabilities!!!
So we rented a draughty flat for three months - so we thought! - it turned into six - in a tiny town half an hour from Wangaratta. At this stage I had no Television, no radio, no computer BY CHOICE, news made me depressed, songs made me depressed, the ONLY books I could read were the ones written by the Naturalist Gerald Durrell. (When we finally got our TV in Wang. for a long time I could only watch programmes like "Bananas in Pyjamas" and other children's shows!!)
I was now crying at the drop of a look, - literally, anywhere and anytime, which embarrassed my husband no end - but I was healing...
With a lump in my throat I still remember how heart-brokenly I used to sob repeatedly, “Where is the choice, Rob”, “We [people with disabilities] have no choices, Rob”. And it was at this time that I, for the first time in my life, felt envy, envy of people who had their own homes, envy of people who had had a chance to travel overseas. I found this rather bewildering as I had always been genuinely glad of others “doing their thing” before…
Now, I have always prided myself on the fact that I had never asked myself “Why me?” in terms of my disability. It suddenly occurred to me recently that this was simply another form of that question. So much for my self-conceit!
Anyway, fortunately for me, our landlord and a couple of the townsfolk were terrific - kept an eye on me when Rob was away in Melbourne working two days a week but didn’t interfere too much with the process of healing that was taking place within me.
This was made more difficult at this time because I had become obsessive while trying to follow Naturopathic injunctions. For over two years I would not touch a food that was meat or was not organically grown. Now, I still say that as obsessions go, this was not a “bad” obsession to have! But, as all obsessive people do, I carried dietary preferences to lengths. I took sandwiches everywhere I went; this must have been a pain for those supporting me, especially Robert, of course. Hats off to him that he never let me go hungry. It must have been a grave temptation sometimes, particularly on those rare occasions we were invited out to dinner!
The healing process was helped by my Transcendental Meditation doctor, who literally saved my life by listening, being empathetic, and meditating with me whenever he could, whenever I did a daily trip by train down to Melbourne to the T.M. seminary, or even over the phone. For some months I rang him every night from the country. I had a horrific phone bill to cope with then, but in the little town I was in, there was nowhere to go to except the Elderly Citizens daily lunches. This wasn’t even as pleasant as I would find it now – because I was obsessively terrified of death by this stage, and it seemed that that was all the people I was associating with could talk about! That and what John Laws had said that morning!
The doctor I saw previously had tried to get me to meditate too, but T.M. was what I needed at this stage, because it doesn’t try to make one blank out all thought. Instead, it uses thought attached to their mantras to release deep-seated stress – without having to talk about, analyse it! Thus, gradually, over the next couple of years, even with the added stress I still had to cope with, my mind gradually calmed down and my thoughts stopped behaving like squirrels caught in a revolving cage and I was able to deal with my life once again.
In my tiny flat, because I had no distractions, except my Gerald Durrell books, I found my T.M. mantra kept coming into my mind all the time and feeling energy surging thru the top of my head. Robert (who has got healer’s hands) could actually feel this energy. He told us that when he first became aware of it, it was “murky”, but became clearer over a period of time; I knew this.
My explanation for this phenomenon is that was the energy coming out of me was the stress of decades (and there’s no doubt we live with stress – just try to get into small “accessible” toilets suitable for a manual chair with a bulky motorized chair and a support worker, for just one example, week in and week out) coming out of my muscles. Non disabled people, if they are wise, play sport to get rid of tension and stress. I, quite literally, “blew my top”! I had a permanent headache for three years during and after my worst times too.
It was interesting that it was only after this process of blowing my top was finishing that my husband found he was able to massage the muscles of my neck. He had noticed that they were like bands of steel for a couple of years prior to my collapse.
My attendant-care agency didn’t realise how badly I needed their support either and this made it more difficult to heal. They had said they couldn't give me more than six months care (I was getting seven hours a week at that stage) in the country, and I was too sick to throw myself on their mercy - I was literally suicidal after not sleeping - partly because "all my Catholic stuff came up and bit me... I remember the sicker I got the more The government’s cuts got to me. This got mixed up with my strict religious background and I ended up feeling guilty, guilty, guilty. As I have intimated I felt I didn’t deserve to be alive!
Some people said to apply for more services - but at this stage we kept saying, “We didn't deserve” - there were many more needy people around - I had been very active politically and had heard devastating stories...
So my attendant care ran out - just one week before the Commission said they couldn't house us - because of a reshuffle! All this was NOT conducive to getting over a breakdown - as you can imagine...
By this time my husband and I were so angry and so irrational - with the system - that we refused to come back to Melbourne. Besides, my marriage – my husband! - was already stressed enough and I COULD NOT see myself going back to Melbourne without any extra attendant care at all.
On top of this, about this time, we were interviewed by a Social Worker in Wangaratta, who asked us what we would need to live in the community. She and her offsider took notes and seemed to us to believe that they could do something for us. Our hopes soared only to be dashed again a week later when she said the community could give us – nothing! We were told to go back to Melbourne, point blank, just like that. We were not told where we could lodge an appeal, who we could turn to for any guidance, nothing.
Eventually we were housed in a block of units owned by the Baptist church and the understanding doctor there eventually - after I had broken down and wept buckets in his office - secured me 14 hours care a week. That was terrific - but we then discovered I was so homesick!
By this stage I was well enough to want to go home - being Ceylonese I missed my extended family something chronic, but Robert point blank refused to go back to Melbourne. But then HE got depressed - there was nothing much for us to DO in Wang. - but he was hanging on to a dream, one of living in the country - and being a Pieces was loath to let it go...
Then I went over to a neighbour's across the courtyard to borrow some cinnamon for a cake - and got exorcised by a visitor of hers. That I was just getting over a break-down with religious over-tones didn’t help as you may imagine. I can look back and chuckle mightily now however; it was so funny! The more I shook with fear and rage, the more they thought the devil was quitting my body.
I think it was this episode convinced us both that we could not live in a town where if you didn't go to church, didn't play sport, didn't have children, didn't have a job, (and weren't born there, Rob says) there were no social "ins" for the likes of us...
Anyway, we ended up in Geelong, which is great for us both. The people are friendlier; there are many, many more things to do here - a Scrabble club, a Kite flying club, a DRC, plenty of live amateur theatre, beautiful beaches, a farm where I go pluck organically raised chooks, a food co-operative, a organic gardeners club, a herb society... And we managed to buy a house for $56,000!! – with help of family - six and a half years ago. My parents and other family are only about 1 1/2 hours away by car, 2 hours by train... We live 5 mins from a station so Melbourne city is only an hour away... And, partly because we don’t smoke, don’t gamble, don’t go out to dinner or watch videos much, we have already paid off our house. This seems miraculous to both of us – we still feel like pinching ourselves!
And, the government has funded extra attendant care for me! It’s wonderful; now I feel I contribute evenly to our marriage, because of my wonderful support workers…
Sorry to have got the computer "runs", but this is the first time I have written about this stuff. It's been too raw...
Now days, when people tell me that political-economic issues don't impact on people's lives I just sigh internally...
Of course there is a lot more – what I’ve written is just the bare bones of the story. But now I feel ready to talk about it in public, if necessary.
If you haven’t already done so, I am inviting you to submit your Consumer or Carer story on your personal experiences with: - Anxiety Disorder, Borderline Personality Disorder, Depression, Obsessive Compulsive Disorder, PTSD, Bipolar, Schizophrenia, Anorexia, Post Natal Depression, Hearing Voices or any other MI I have overlooked.
The average length of stories are 6 to 15 pages. However I do have those that are 4 pages.
Minimum accepted is 4 pages, narrow margins, size 12 Arial font and single line spacing. Send them through to firstname.lastname@example.org in a MS Word document as per the above settings.