Take a deep breath. The election's over. Now I want to start a letter-writing campaign, to try to make the government aware of issues that affect those of us with lupus and other chronic illnesses. Let's do this with actual posted letters on paper, because they're a bit harder to ignore than emails and internet surveys.
Find your electorate in this list: http://www.aph.gov.au/Senators_and_Members/Members. Click on your electorate to find your local member. Then click on your local member to find their address.
What are you writing in your letter? Well feel free to put it in your own words, and add in any more information you feel is relevant, but this is a basic draft:
Congratulations on your election (or re-election) to the seat of .......
As a member of the Australian Parliament, you may want to know about issues faced by Australians with serious chronic illnesses, such as lupus, fibromyalgia, and related conditions.
You may be aware that women are the fastest growing group of people becoming homeless, and one of the factors leading to homelessness in women is frequently chronic illness.
Lupus causes pain, fatigue, cognitive dysfunction, arthritis, and organ failure. It does not discriminate about which organs to attack. It is incurable, and eighty percent of the people who have it are women.
Many people who have lupus struggle on for years, trying to live a "normal" life, working full-time, providing for their families. There comes a time for many of us however, when that is no longer possible.
Chronic illness can place an inordinate pressure on relationships, and some marriages break up, leaving the patients being the only one supporting themselves, and sometimes children as well.
So what happens when the doctor says it's time to stop work? We apply for the Disability Support Pension. Very few people with lupus actually get it. Many keep working full time and end up with organs failing, multiple hospitalisations, etc.
In the lead up to the election, disabled pensioners were demonised as a "burden on the economy", and the pension was tightened up so that about eighty-five percent of applicants for the DSP were refused. That clearly means that even fewer people with serious chronic illnesses are being accepted.
What do you suppose happens to the lupus patients who are denied the DSP? Some struggle to continue to work full time - at great cost to their health. Some drop to part-time work and struggle to survive on insufficient income. Some will end up on Newstart Allowance, and will have to keep applying for jobs they are not physically able to do, while struggling to pay rent and survive on the income they receive. Some try to support themselves with whatever arts or crafts work they do as therapy at home. Whatever happens, their rent or house payments aren't reduced.
How can you help? You are one voice in the parliament that controls much of our lives. You can promote easing up on the DSP for people with severe chronic illness. Our doctors tell us to stop working for a reason. A test to see what we can do doesn't show the true picture. Any of us can do most things a healthy person can do. We can't do as many things in a day as a healthy person can do. Someone with lupus may be able to work or care for herself or himself and a home; but not be able to do both. Most of us prefer to work, and will work as long as possible, so when we apply for a DSP, it's necessary.
You can work towards reinstating the Chronic Illness Dental Scheme.
You can object when people on the DSP are called things like a "burden on the economy." We didn't choose to get sick, and we don't try to be a burden on anyone. (And remember parliamentarians don't have to be sick or at retirement age to get their pensions, so calling us a burden, when there are people quite able to work being paid much more is more than a little offensive.)
You can protect Medicare and the Pharmaceutical Benefits Scheme if they ever are under threat.
Thank you for your attention to this matter.
If you should want to know more about my condition, or how I manage to live with it, please contact me on .........
That's my version. Yours may be different.
The important thing is that our parliamentarians understand that living with a chronic illness is a major challenge, and those who can't work need to be supported.
Please write to your member of parliament, and please ask everyone you know to write as well. (Healthy people might need to change some of the wording.)The more people who do, the more likely politicians are to realise that this is important.
I'm sending to my local member, the Prime Minister, and all senators from my state. Please note in the comments who you've written to. (It doesn't matter if anyone gets several letters.)
I've just discovered the list of senators on the Parliament House site was last updated before the election. Please leave it a week or two before writing to Senators, so that you get the right people. The Members of the House were updated since the election, so go ahead and contact them right now.