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It has being very much a limbo time for me. December was a hard month. January is looking brighter; but I am waiting for some dots to connect.
I’m waiting for a space with a new specialist. Looks like I’ll be waiting till May, which kind of means that I can’t really start the rebuilding project that I committed to before Christmas.
A home care service has started; personal care and house work. It’s interesting having my time managed by somebody else to the extent that it has happened. I think they have the impression that because I don’t work I don’t really have a life. I hope these are just teething problems.
After watching previous seasons of The Biggest Loser over the last couple of weeks I’ve been thinking more about my body and fitness. I wasn’t really given a lot of information about or options as a child and teenager about what to expect from my body or even a clear sense of fitness options beyond standing frames. I wasn’t involved in sport (even wheelchair sports). This is no one’s fault, but I do feel like I’m missing out on getting the most out of my body in terms of the strength that it has and weight loss options. Yes I do have a belly! Fitness is also a good distraction and stress management tool.
So I did a bit of digging and found this. I am ashamed to admit that I don’t even remember being told what sort of cerebral palsy I have, so I guess I need to start there. I could make a guess but given I’m going back to see the GP on Friday I’ll ask.
For example, I’ve realised as I written this using voice recognition software again, how much of a tactile person I really am. I’m impressed with how quickly I can get things “down on paper”, I do miss typing. So I think exercise will be good for my head as much as anything else. It might also help me reconnect with my form and stop feeling like a head on a stick.
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Dear All,
I’m sending this out on a personal note.
In simple terms this email is a thank you. It is international Day of People with Disability. I refuse to deal with Christmas till after today every year!
Regardless of how stage managed events around it need to become to raise the profile, IDPwD is intensely personal and profound for me.This year it is quite emotional for me. For me it is an opportunity to take a big breathe and acknowledge the journey, the wins, the losses and the inevitable work arounds. This starts with looking at my own life and using that reflection to look outwards. It involves giving thanks to all the powers that might be and to those in my circle who give me strength and courage and other resources to make “it” happen. You are each getting this because you have personally helped me “run that gauntlet”
Interestingly, looking out for a minute I see a big disconnect between parts of the messages that are being sent out this year. Domestically we are being told to celebrate the successes and the achievements and while fighting for the NDIS, keep it light and fluffy and a-political, This is even though there are enough people with disability to fill Victoria and we are under-utilised and more likely to be in all sorts of other not-nice minorities as a result .
On the other hand, the United Nations who proclaimed the annual observance in 1992 still tell us that:
“Persons with disabilities make up an estimated 15 per cent of the world’s population. Almost one-fifth of the estimated global total of persons living with disabilities, or between 110-190 million, encounter significant difficulties. Furthermore, a quarter of the global population is directly affected by disability, as care-givers or family members.
Persons with disabilities encounter many disadvantages in their societies and are often subjected to stigma and discrimination. They remain largely marginalized, disproportionately poorer, frequently unemployed and have higher rates of mortality. Furthermore, they are largely excluded from civil and political processes and are overwhelmingly voiceless in matters that affect them and their society”
I think this is a call to action if ever I heard one!
I think the truth lies somewhere in the middle and that for those of us who are “active participants” have the balancing act ongoing. It is because of people like you that I find the strength “to run the race before me”, even if we never talk about disability! Thank you from the bottom of my heart. . It takes courage to be sit on the margins. The marginalisation may have have changed but it is still present and I still feel it so thanks for the gifts of courage I am given in the big and small ways..
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I’ve always wanted to be a writer. A good writer. Partly because I love words and the way they can move both writer and reader of all types. But partly if I’m honest ( the new me now) because when well done, it seems it can be portable.
I want to write because I want to hope that I’m half good at it. I want to write because I feel safer behind my words. But in the same breath I don’t think I’m that good at it. Or at best good enough to do the dream.
I don’t remember the small things of my life, my real life. I promise myself I will, but I don’t. I also don’t really remember the details of good enough stuff I read.
I’m listening to Geraldine Brookes giving the first of her four Boyer lectures. It is broadly speaking on the environment and having a sense of place. I usually get turned off by environmental activism as much of it seems to be anti people, anti relationship and anti balance and full of guilt mungering and but you must know generalizations
I like the way she put her acknowledgement of country neatly within the context of her lecture; where it made sense and resonated with the rest of the points she was making. I believe her. I join her in that sentiment wholeheartedly as opposed to watching it sit there like a sixth digit.
I now at the end of that lecture want to go and check that the wheelchair charger that keeps me disabled and handicapped from having any sort of real wilderness experience is off and run the handwashing load that is due as early as possible to make use the natural sunlight to dry things in air.
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Yay
Congrats to Tony for getting there too. At least he had the manners to warn his readers.
The voice dictation software helped somewhat as did good ol’ pen and paper.
I have promised to let people read at least extracts but I must clean it up first!
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