Tag: Discrimination

Disability and Disasters

Published on by Bubbles in the BrainLeave a comment

By now, the world has heard of the horrific bushfires that have been ravaging Australia for the past few months. People have died, hundreds of homes have been destroyed, and our beautiful bushland has been absolutely devastated.

Living in a country with a climate as volatile as this one – if we aren’t on fire, we are probably flooding, in drought, or feeling the impacts of a cyclone – it is vital that Australians remain disaster aware and know what to do if we get early warning of a natural disaster heading through our area.

Today I want to talk about what additional steps those of us with a chronic illness or disability should take, and what we should have in our go-bags. I’m not going to recap the basics; disabled or not, everyone should be carrying water, first aid kits and food. Those of us with health issues unfortunately have extra things to worry about.

The sad truth is that people with disabilities are twice as likely to be impacted by a natural disaster as those without. In the 2011 Japanese tsunami, the mortality rate for disabled people was twice that of the non-disabled population. We are statistically less able to evacuate, or require assistance to do so, and often shelters and disaster management plans don’t take disability into account. Even once safely evacuated, we often require greater levels of health care and access to services and vital supplies such as medication. We are often not consulted by governments, local or large, when making these plans.

This is why I don’t like writing this article. For sure, disaster-preparedness is on the individual, insofar as the individual can be prepared. But disabled individuals can run into hurdles so quickly. It’s all very well to say “have a go-bag and a method of escape”, but what if you literally can’t? That’s why I want non-disabled people to read the questions below too, and think what you can do to help. If the disabled person asking themselves these questions below has to say no to everything, they may well die when disaster hits. You could be the person that steps in and changes on of the ‘no’ answers to a ‘yes’. You could be their way out of the disaster zone.

In the meantime, fellow disabled and sickly friends, these are the questions we need to consider.

1) Before it happens

Stay in the loop! Studies suggest people with disabilities are often the last to know when disaster is approaching. If you have a smart phone or internet access, sign up for notifications from your local emergency services. If you don’t, know your local emergency news channel and tune in, via radio or tv.

If you are not an electronics person, then forge relationships with people around you so that they think to alert you when trouble is coming.

2) How are you going to get away?

Not everyone with a disability is fortunate enough to be able to drive. Plenty of people who can drive can’t afford to buy or run a car. If you can’t drive or don’t have a vehicle, have you put thought into how you might evacuate in the case of a natural disaster? Do you have family, friends or neighbours whom you can rely on for transport out of there? If not, is there a support network for disabled or sick people that you can reach out to? If not, does your city or town provide any services you can utilise?

If you have limited options, you need to consider those options much earlier than able-bodied people, as it is much harder to leverage the people around you when they are also at the point of scrambling for an escape.

You also need to think about where to go. Often, public shelters are not set up to accommodate those with disability or serious illness. It is a failing of the governments providing these shelters and it sucks that we are disadvantaged by it, but if there are better alternatives out there, you may wish to consider utilising them if you can.

3) If you cannot leave, or do not want to, what is your plan?

Is your home defensible in the case of fire? If you are looking at an earthquake, flood or cyclone instead, do you have a safe place within your home you can shelter? Will you be able to fend for yourself when the power goes out? If you are physically disabled or suffer painful flare-ups and you have to climb stairs or move around obstacles to get to a safe spot, are you able to do so unassisted?

If you know you will struggle alone, do you have a friend, neighbour or carer who will be able to stay with you? If they cannot or will not stay, see if you can organise for them to check on you as soon as they are able to return to the area, or alert emergency services. See if you can get their help in getting to a safe place within your home, and ensuring you have what you need close to hand.

4) Ensure you have all your medical stuff ready

If you have to leave your area or your normal doctor is not available, it can be very hard to get the medications you need. I know of too many people with endo who have seen a new GP whilst their usual GP is on leave and been told that the new GP will not dispense their normal pain medications. If you become aware of a disaster approaching your area, consider asking your GP to give you your next batch of pain meds sooner (explaining why, of course!), or to provide you with a letter to show a new GP to encourage them to write a new script for you. Have crucial numbers – GP, specialists, family, carer and employer – written down, in case you have no internet access to look them up.

If you can, get your most important medical documents together – Medicare card, healthcare or pension card if you have one, private insurance documents if you have insurance, notes from recent procedures, etc. If you use an aid or device, whether it’s a wheelchair, hearing aid, colostomy bag, catheter, or alternative pain management  devices such as TENS machines or chargeable heat-packs, have them accessible. Make sure you also have spares, or necessary supplies like batteries or a charger.

If you have a service animal, ensure that you also have their medical stuff together, along with spare food (particularly if they need a special diet).

If you are evacuating with someone (the ideal), ensure that they are aware of your basic needs and know how to operate your equipment or help administer your medication.

5) Consider the extras

For those with endo or other diseases causing random, prolonged bleeding from the crotch, make sure you have plenty of pads or period-underpants. (You can get the Love Luna brand from Woolworths now.) If access to fresh water may be limited, look for wipes that are safe to use for the vulva so that you can keep yourself clean and help reduce the chance of infections such as thrush.

If you are prone to flare-ups, ensure that the clothes you are wearing and the clothes in your go-bag are soft, comfortable and won’t irritate sore pelvises, joints, or other pressure points. Go for quick and easy – maxi dresses, tracksuit or pjs bottoms, and t-shirts. Pack your softest, comfiest bra.

If you have a speech impairment or are deaf/hard of hearing and usually communicate through sign language, pack pen or paper – there’s a good chance evacuation may result in you being surrounded by people who have no AusLan skills and won’t be able to communicate with you properly.

If you are going to be staying, consider devices that can attract attention easily with minimal effort from you – bright torches (a good idea anyway for when power goes down) and a loud whistle or air-horn.

 

These are the five major things that I think we need to consider above and beyond the things an able-bodied person might. Some of them may not be issues for you; there may be many things I have no mentioned here that are vital considerations for you. You know yourself best and are in the best position to plan.

If you would like a more detailed resource, check out this guide by FEMA and the American Red Cross. It covers a lot of stuff and I found it a bit overwhelming, but it is much more comprehensive that what I’ve written here.

If anyone who has been evacuated or impacted by the Australian bushfires, or by any other natural disaster, would like to share their experiences and insight, please do so. This is such an important area of advocacy – lives are literally at stake – and the more information and tips we all have, the better.

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Decisions, Decisions, Part I: Employment

Published on by Bubbles in the Brain1 Comment

As my regular readers will know, at the end of last year I made the very difficult decision to leave my job as a litigation lawyer and move into a more policy-focused role without any litigation element. It was a big change, and it felt like a big loss. As much as I adore my new job, there are certainly elements of my old job I miss. Most of all, I am sad that the decision wasn’t one I could make because I wanted to, but because I had to.

Now, as my endo and adeno continue to cause trouble, I’m faced with another decision – reducing my hours.

Today, I want to talk about how you make these types of decisions. I highly recommend using a journal to write down your thoughts on this, or to talk at someone. I find it helps solidify my reasoning and makes me think it through logically and thoroughly.

Basically, there are a lot of questions to ask yourself.

First, and most obviously:

1) Can you physically do it?

Whether you are asking this about the number of hours your are working, the type of work you are doing now, or the type or work you are looking to move into, it is the most basic consideration. If you cannot get through a full day without the pain driving you to your knees, or sending you to the bathroom to cry multiple times a day, or forcing you to take serious painkillers that compromise your ability to do your job in other ways, it might be time to rethink your current work.

When thinking about this, don’t just take into account whether you can struggle through a work day. Think about whether you can get through a work day and still have the strength to feed yourself, keep yourself clean, and complete those basic necessities of life? Life does not begin and end with work, and if a full-time day in your current role results in you collapsing into bed fully dressed as soon as you crawl through the door every day, that job is not working for you. Some days like that are a reality for many people with chronic pain, but if that is the majority of your days, it is not sustainable and you will end up in a really, really bad way.

2) Are there changes you could make that would let you keep the status quo?

Now, it may be that cutting your hours is the change that lets you keep your job, but other things might work too. If you work in a standing role, such as at a checkout, and you find that painful, could your employers give you a chair? If you have an office job that involves sitting all day, could a sit-stand desk help? Would a heatpack at your desk make a difference? If you struggle more in the mornings, could you start and finish work later, or vice versa if your pain is worse in the evening? Is there any way you could work from home for a day a week?  If you have to wear a uniform, are there allowances that could be made for a stretchier waistband or more comfortable shoes?

Remember that the Disability Discrimination Act mandates people making reasonable adjustment for disability (see section 5). If you aren’t sure that what you are asking for is reasonable, or your work is saying it isn’t, consider a chat with a lawyer. Legal Aid commissions around the country have helplines for free advice, and many lawyers will give you a free initial consultation or do the first 15 minutes for free.

Please note that the above is not legal advice.

Ultimately, though, if there isn’t an adjustment that will do enough to let you stay where you are, that’s another sign it may be time to move on.

3) Can you afford it?

Sadly, this is the worst question, but it is one of those horrible realities that ultimately dictates what you choose. It can put you in an awful situation where your body can’t physically afford for you to keep working, but your family (or even just you) can’t afford for you to not. Let’s not pretend that the DSP is a lot of money, even if you can get it, and Newstart is even worse.

That being said, it is still a relevant consideration. If you have a marketable, flexible skill, there might be things you can do to supplement or create income outside of Centrelink. For example, if you are fluent (and certified) in a second language, you could pick up some translation or phone interpreter work. If you have good English skills and can work at a computer, editing or transcription might be good. If you are a superb knitter, perhaps there is an Etsy store in your future. With all of these, though, bear in mind that your income is reportable to Centrelink and may reduce your payments accordingly, so assess whether it is worth it for you.

If you don’t have a skill or the energy to market it, what else can you do?  Are cheaper accommodations an option (noting that moving is a big deal even when you are healthy)?  Are you eligible for government housing or rental assistance? Are there any costs you can cut down on?  These are not nice questions to ask, and I hate the idea that people have to go through this, but it is a relevant consideration.

If you know that you cannot physically work any more, but also have no idea how you can possibly afford not to work, speak to a disability advocate, social worker, or community lawyer.  Ask what funding options there are and what you need to do to qualify for them.  Get as much medical evidence as you can from your treating team.  I can’t guarantee that things will be fun or easy (in fact I can almost promise it will be agonisingly frustrating), or even that you will be able to find the answer, but it will help inform your choice.

What are your other options?

If you are considering a workplace change rather than unemployment or a reduction of hours, what are the options for you to move on to?  Is your prospective employer likely to be flexible?  Will the new job suit your needs?  Will you enjoy it?  Seriously, mental health is important.  You want to like your job, especially if you are spending a lot of time doing it.  Will the new job allow you to grow and advance?

These questions are, sadly, less important that the physical and financial needs, because, well, you need to be housed, fed, and capable of standing up.

 

None of the above will give you an answer, but I hope that asking yourself these questions helps make the decision a little clearer in your mind.  It may also help you justify it to other people (not that you should have to, but there are always judgemental people).

Have you had to make a decision like this?  How did you decide in the end, and do you feel like it was the right call?  Let me know in the comments.

The Lessons of 2018

Published on by Bubbles in the Brain1 Comment

TW: depression, ableism, general unhappy stuff

2018 was a challenging and scary year.  I once again defied my doctor by seeking a second opinion on whether further surgery was going to help, and then going for it.  I left the organisation I’d worked at for five years.  I adopted a dog and a cat.  I endured massive amounts of pain and dealt with debilitating medication-induced depression.  I also learned some things.

 

1)  The world forgets the sick and disabled

Not the most cheerful starter, I’ll admit.  It’s true, though.  Healthy people (and I’m sure I was guilty of this prior to really suffering from endo) are massively prone to making sweeping statements that reveal that they simply do not factor in the sick and disabled.  For example, “everyone should be able to change a tyre.”  “Saying things are too expensive is just an excuse.”  “There’s no reason not to do this thing.”  They speak from the perspective of a totally healthy person and totally forget that actually, disability and illness are perfectly valid reasons why people can’t do the things they are talking about.  Whether they mean to or not, it is really exclusionary language and it leaves a lot of disabled people sitting there thinking, “What about me?  Why don’t I factor in here at all?”  It’s a really isolating feeling.  It makes you think that the world does not care.  We’re an after-thought at best.

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Image description: a hand pressed up against glass, touching its own reflection.  

 

2)  Some people actively hate the sick and disabled

It’s an attitude I honestly thought had gone the way of the third Reich, but there are real life people existing today that think disabled people are a drain on society, contribute nothing, and therefore have forfeited any right to assistance, and, on occasion, existence.  It was shocking and horrifying for me to learn and I’m a bit ashamed I didn’t understand it fully until last year.

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Image description: Scrabble tiles that spell out “Hi haters”

 

3)  Spoon theory is so applicable

I’ve previously written about spoon theory, and it honestly is such a useful way to describe how I navigate a day.  I became particularly aware of it over Christmas.  We went to stay with my husband’s family in Adelaide, and there were a lot of people there.  I was tired from the drive (it’s at least 12 hours from where we live in the east), my pain levels were quite high, it was hot, and the noise and pressure to socialise just wore my spoons down before I’d really done anything at all.  I felt terrible, because my in-laws were so generous and hospitable, and I ended up spending a good chunk of Christmas Day in bed because it was all I could cope with.  I was spoonless.  Without spoons.  Physically, emotionally and intellectually completely drained.

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Image description: a row of rainbow spoons, ranging from pink to yellow to green to blue, in bubbly liquid

 

4) You have to make the most of the good times

If I have a good day, I need to grab it with both hands and exploit it for all its worth.  That’s the day I need to text my friends and ask if they are free after work.  It’s the day I need to go for a run, clean the house, shop for groceries, walk the dog and cook for the week ahead.  Those days are limited and precious and you never know when they will stop happening, so you have to carpe the heck out of that diem.

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Image description: a cheerful toy sheep next to an insulated coffee mug with a blue check pattern that says, “today is gonna be a good day”

On the flip side, of course…

 

5) Life as a spoonie is a gigantic series of compromises and gambles

If I do too much on a good day, I risk guaranteeing that my next day will be bad.  On the other hand, there’s no guarantee that it won’t be bad anyway, so maybe I should just go for it.  On the other other hand, tomorrow I do have this thing I’m supposed to do so perhaps I should be extra careful.

It’s a similar story with medication.  The mirena is jam-packed with wonderful progesterone that should dramatically slow the growth of my endometriosis.  However, it now turns out that it could be responsible for a whole bunch of my pain.  Meanwhile, my Zoladex definitely reduces my pain but menopause is not exactly a party, and adjusting to it is seriously rough.

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Image description: Five red translucent dice with white spots and two smalls stacks of grey and white poker chips

 

6) A doctor you can work with is worth their weight in gold

I have seen four specialists since my initial diagnosis in 2016.  The first one performed the surgery that sent my endo spiralling downhill.  The second refused to believe that I could possibly have endo in me four months after my initial surgery and seemed like he didn’t believe my pain because he couldn’t provide a reason for it.  The third was great for a while but it felt like, after the second surgery and sticking me full of progesterone devices, that he kind of lost interest and was a bit annoyed that I wanted more relief than I was experiencing.  When I met Dr Edi-Osagie, I finally felt like I had found a doctor who listened and genuinely cared.  The difference that makes is literally making me tear up just thinking about it.  It matters so much.

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Image description: a hand holding a stethoscope against the chest/tummy of a white teddy bear

 

7) Sometimes hard and scary decisions are necessary

Quitting my job was terrifying.  Committing to a third surgery that would cost a lot of money was terrifying.  Every time I take a new medication it is scary because I have such terrible trouble with side-effects.  The decisions we have to make can alter our lives and our bodies, sometimes irrevocably, and there are so many to make.  I’m scared every time, but I’ve got a lot better at taking the plunge because I know I have to.

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Image description: a grey wall with seven identical brown doors reflected in the shiny floor

 

8)  Depression is harder than you can possibly explain

To someone who has never suffered that overwhelming apathy and bleakness it can sound silly, like something you should just be able to pull yourself out of with a little bit of gumption.  You cannot.  It’s like trying to sit up when a giant is stepping on your back.  Even writing it out now I can’t actually convey what it feels like.

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Image description: a person in a black hoodie and blue jeans sitting against a blue wall holding a square piece of red paper over their face.  The paper has an unhappy face drawn on it.

 

9) You cannot overstate the importance of support

I actually can’t imagine what my life would look like if I didn’t have my husband and my parents.  Ok, I can, but I don’t want to, because I would be very poor, living in a pigsty if I hadn’t been evicted for not paying rent, not eating properly, and probably not having the strength to challenge my previous doctors when they started to give up on me.  I certainly wouldn’t have the wonderful life I have now – and it is still a wonderful life, even if the tone of this blog post may be making people question how I feel about it.

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Image description: A circle of six people’s hands, each hand holding the wrist of the next person.

 

10) You are stronger than you think

Novels and movies tend to romanticise suffering somewhat, and so you grow up thinking, “yeah, I’m tough, I could suffer.”  Then you do, and you realise that actually suffering really sucks and you can’t do it after all…but then you can.  Every day that you are still here is another day you’ve kept fighting.  I re-read the phrase, “while there’s life, there’s hope” today, and honestly, I have never appreciated that quote so much.  One day this particular illness may outstrip my capacity to live through it.  I don’t think it will, but it could.  But not today.  There’s hope.

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Image description: a plastic purple dinosaur (maybe a T-Rex?) on a pink background, because dinosaurs are hecking strong and so are we.

 

Did you discover anything new in 2018, either about you or about the world in general?  Let me know in the comments.

10 Tips for Zero-Waste Endometriosis

Published on by Bubbles in the Brain1 Comment

Yesterday I talked about veganism.  In it, I mentioned two things that I’m going to carry on with today – environmentalism, and terrible people.

We all know that the planet is important – it’s the only one we’ve got – and we’re going a fair way to destroying it.  We need serious changes, predominantly at national and industrial levels, to wind back the damage.  That’s why zero-waste living is a growing movement (and one that gels neatly with veganism).

Unfortunately, the zero-waste movement has its own share of people who are elitist, highly critical, and totally unaccepting of the fact that different people have different limitations and abilities.  I have literally seen one woman declare disabled people to be a waste of space because they don’t contribute but still generate waste.  It’s not welcoming for people like me who can’t do many of the things that are more eco-friendly on bad days, such as chopping vegetables rather than buying packaged, pre-chopped produce.  There’s a lot of challenges for us in a zero-waste life – buying in bulk in Australia is trendy rather than a norm, so it’s expensive and not feasible for us.  Dumpster diving is for fit folks who can spend their evening moseying around shopping centres.  Making tasty snacks from scratch is something we can’t always physically cope with.  Reusable toilet paper might not be up to our bowel explosions.

So, what are some positive changes that people with endometriosis can make that aren’t really physically demanding?

1) Swap tampons for menstrual cups and pads for cloth

If you can manage it, things like the Luna cup are a great alternative to tampons.  Made of flexible silicon, they are resuable, washable and come in different sizes.  You just insert them, then pop it out when you use the loo, rinse it, and reinsert.  It does have its downsides – if there is no sink handy, it is not a tidy process.  However, the women who wear them often cite them as being incredibly comfortable compared to tampons, and they are definitely less wasteful.  Sadly, these bad boys aren’t an option for me, as even tampons cause me bellyache.  Other women with endo may experience similar problems.

There are a couple of alternatives to pads, too.  Undies like Thinx are my preference, as I think reusable pads create more washing for us than we might need.  However, if reusable pads work for you, go for it.  The fact that they are a breathable natural fabric may also help reduce the incidence of thrush.

2) Swap normal cleaning products for vinegar, soda and other home-made alternatives

I love white vinegar for cleaning things.  Most of the time I find it more effective than ordinary surface sprays, particularly when paired up with baking soda.  I’m pretty sure I cleaned my first apartment’s bathroom almost exclusively with this combination, and it looked great.

Another good thing is that vinegar is easy to buy in bulk so there is less packaging, and you can get baking soda in cardboard from Woolworths.  I then store it in a sealed jar and recycle the box.

3) Take bags with you

When I do make it to the grocery shop rather than using Woolworths’ or Coles’ online options, it tends to be a planned trip anyway because I need to conserve my strength, get exactly what I need and leave ASAP.  That makes it easy to take my own resuable bags, despite recent furor to the contrary.  I like to leave a few in the car if I have unexpected energy after work, too.  You can even get tiny ones to fit in your handbag.

4) Grow it at home

I find gardening incredibly soothing, although doing it on a large scale is hard work physically.  However, you can grow plenty of things inside or in small spaces.  Herbs are typically the easiest, and it is so nice to have fresh herbs around rather than relying on packaged stuff.  It motivates me to cook and makes me feel like I’ve achieved even more than just cooking a meal.  Pick your favourite herb and see if you can grow it on your windowsill, balcony or garden.  If you are coping ok with that, easier fruits and vegetables might also be within your power.

5) Get a bidet

If you can afford it, a bidet is a little luxury that is also environmentally friendly.  You know those days when your bottom is just raw from cleaning up endless diarrhoea?  Imagine how much more soothing a gentle stream of warm water would be.  And you get to save the planet too.

6)   Buy second-hand

I mean, I do this because I can rarely afford clothes first-hand anymore, but even if you can afford to splurge, buying second-hand is a great way to keep clothes away from landfill.  Check facebook for a Buy Swap Sell group for your favourite brand.  There’s thriving marketplaces for Review, Cue, Alannah Hill, Kitten D’Amour, Pin-Up Girl Clothing, Portmans and a whole range of others.  Big designers attract big followings.

7) Have a handbag kit

The times you do go out, there are things you can do to make sure that you are being zero-waste on the go, if you have room in your handbag.  A zero-waste handbag could include any of:-

  1. A hanky instead of tissues;
  2. A cutlery roll (a metal or wooden fork, knife and spoon in a little fabric container so that you can avoid disposal takeaway cutlery);
  3. A Keep-Cup for your favourite beverage;
  4. A metal, bamboo or silicone straw, if you are a straw-user;
  5. A little reusable bag.

8) Rethink your skincare

There are a multitude of recipes for home-made face masks, cleansers and moisturisers out there using only ingredients from your pantry.  I haven’t gone that far, but I have introduced coconut oil as a make-up remover.  Very effective.  It’s also a nice little boost for the dry ends of my hair.

Consider a switch from bottled bodywash and hair products to bars, such as Lush or Ethique.  They don’t really take any more in the way of effort, they last for ages and they still smell great.

9) Recycle properly

It may be tedious but in Australia it doesn’t take that much effort to separate recyclables from actual waste.  Don’t chuck paper into landfill when it could be recycled into something new and shiny.  Don’t chuck stuff that is clearly rubbish into the recycling and ruin everyone’s day.  Just don’t be that person.

10) Encourage friends, sign petitions and raise awareness

Straws are a big hype right now and seem to be weirdly polarising.  Everyone has heard that straws are bad.  But do they know that the biggest pollutant in our oceans at the moment is discarded or broken fishing nets?  Without ever leaving your computer you can start or sign petitions, write letters to politicians and share clever memes on facebook to get people on board with fighting for systemic change that will have a far greater effect that any amount of swapping and recycling we can do on a personal level.  Be the change, but also ask other people to be too, including corporations and legislators.

 

Most of all, ignore the haters that say you aren’t good enough because you can’t swap your car for a bike and live in a tiny home growing organic kale.  You do what you can with what you have.  We are inherently involved with a medical system that generates vast quantities of waste because it has to for hygiene reasons.  You and I, endo-brethren, will likely never live those instagrammable zero-waste lives with beautiful pantries full of mason jars with beans in them.  But we can do our best, and everyone else can stick their criticism somewhere dark and smelly.

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THESE pantries, you know?

Do you have any zero-waste tips that I’ve missed?  What changes have you managed to make to help the planet without hurting yourself?  What do you say when people criticise you for “not doing enough”?

 

 

Dealing with Discrimination

Published on by Bubbles in the BrainLeave a comment

I’ve mentioned previously that dealing with discrimination at work is a risk for anyone with a chronic illness.  In a way, I get it – what employer wants to pay for someone who can’t always perform at high capacity, and who will take far more sick days that your average employee?  On the other hand, it’s hard to be sympathetic when it’s your livelihood at stake.  Got to love capitalism.

But discrimination is a reality for people with chronic illness, so what can we do about it?

The law

I’m a lawyer, so the first thing I want to talk about in this post is the law.  However, I’m not an employment lawyer or a discrimination/human rights lawyer, so my understanding of the legislation is comparatively simplistic.  That may not be a bad thing, though, because I don’t want to bore you to tears.

The two key pieces of legislation that any endo-sufferer should know the names of are the Fair Work Act 2009 (Cth) and the Disability Discrimination Act 1992 (Cth).  That Cth in brackets means that it is Commonwealth legislation, so applies Australia-wide.  There may be additional Acts in your jurisdiction that supplement the framework created by these two.

The Fair Work Act (“FWA”) is basically an outline of all the rights and responsibilities of employers and employees.  Be wary – the protections for unfair dismissal, which are of most concern for us, don’t kick in until you’ve been in a position for 6 months, or 12 months if you work for a small business (less than 15 employees).  s385 of the FWA covers unfair dismissal.  Basically, it’s unfair if it is harsh, unjust or unreasonable.  It can also be unfair dismissal if you were told you were being made redundant, but you actually weren’t and the organisation was just looking for a sneaky way to fire you.

s340 of the FWA also protects you from an employer taking some sort of action against you, such as cutting pay or hours, because you exercised (or chose not to exercise) a workplace right, such as taking sick leave or complaining about another staff member.  s342 sets out a whole bunch of things that may be adverse actions in detail.  Under s343, employers also aren’t allowed to bully you into an action, and s344 prevents them from exerting undue pressure on you to change your working arrangements.

The FWA also has in-built anti-discrimination conditions.  s352 means they can’t discriminate against you for temporary absence due to illness or injury.  s351 means that they cannot take adverse action against you because of a disability.  HOWEVER, that does not protect you if you simply are not capable of meeting the requirements of the job.  If your endometriosis becomes so bad that you cannot carry out a key function of the job, changing your job or even firing you may not be illegal or discriminatory.

The Disability Discrimination Act (“DDA”) focuses on discrimination generally due to disability, including in areas such as education or access to premises.  It differentiates between direct discrimination (treating someone with a disability differently) and indirect discrimination (requiring someone with a disability to comply with a requirement that they cannot comply with where reasonable adjustments could be made to allow them to comply).

s15 of the DDA focuses on discrimination at work.  It makes it illegal to take the disability into account when determining if someone should have a job or what the conditions (pay, hours etc) of that job should be, to deny them access to training, promotions or transfers, to dismiss them, or to in any other way subject them to a detriment because of their disability.

Workplaces will generally also have their own enterprise agreements or awards that may also cover some of these things.

All of this raises the question, of course, of whether endometriosis is a disability.

Is Endometriosis a Disability?

Officially?  No.  The Department of Social Services does not list it as one for eligibility for a carer, but that list is very small anyway and you have extremely low day-to-day function to qualify.  It doesn’t appear that we qualify for the National Disability Advocacy Programme either.  I think there is some scope to argue that it may be a disability for the purposes of the National Disability Services, based on their definition of “conditions that are attributable to a physical cause or impact on the ability to perform physical activities”.  However, the sporadic and irregular nature of the flare-ups may disqualify many of us.  Those in constant, extreme pain are more likely to be able to mount a successful argument there.

However, those lists are about access to services.  The relevant legislation, the DDA, includes us.  s4 defines disability as including “the presence in the body of organisms causing disease or illness”.  So we are arguably protected from discrimination based on our endometriosis under that Act.  Importantly, the FWA doesn’t require a disability to activate most of its protections anyway -non-disabled people are protected from unfair dismissal too.  Given that these pieces of legislation are more important than the things mentioned above in terms of protecting us at work, I think that’s a win.  In the face of unemployment, it’s certainly an argument I’d give a whirl.

What can you do?

But what do you do if you experience discrimination at work?  It’s all very well for me to say, “That’s illegal!”, but how does that help you?  You have a few different avenues to go down in terms of seeking a remedy for the wrong that’s been done to you.

The first step is almost always to attempt to resolve the matter internally.  Speak to your boss, to HR, to your boss’ boss, whoever you need to to get things moving.

However, if a matter can’t be resolved internally, you have to take it elsewhere.

If you have been unfairly dismissed, you have an incredibly tight time limit to lodge an unfair dismissal application with the Fair Work Commission – just 21 days.  That’s real days, including weekends and holidays, not business days, so get it lodged ASAP.  The site has a load of detail on unfair dismissal and making the application here.  Even if you aren’t feeling too certain and want to wait for legal advice but can’t get in with a lawyer before the 21 days are up, just lodge it.  You can always amend it with a lawyer’s help later, so just give it your best shot and get it in.

If your application is upheld, you can get one of two things – compensation or reinstatement.  Most people don’t want unhappy jobs back and go with compensation.  The FWC can also force the former employer to give you a good reference so they can’t take revenge on you for winning.

If you haven’t been dismissed but are having other issues at work such as forced reduction of pay or hours, a change of position or being denied access to promotion, you can make a General Protections Application.  You can also make one of these if you are dismissed but it doesn’t amount to an unfair dismissal (although usually you’d just make the unfair dismissal application).  If the GP application is about dismissal, that tight 21 day limit still applies.  If it’s about other stuff, relax, you’ve got six years to lodge.  It’s always better to lodge sooner, though, where witnesses’ memories are fresh and the evidence is easily reached.  Here’s some great information sheets on GPs.

You can also make an application to the Human Rights Commission about workplace discrimination under the DDA.  You can either apply through the Australian HRC or your state or territory HRC.  The process is pretty similar for both – you have a conciliation, at which the HRC tries to get you to come to an agreement.  If you do, your employer may offer an apology, compensation, reinstatement or systemic changes in the workplace through training and education.  If you don’t…I find that the process tends to fizzle out a bit there, in my limited experience with clients with HRC complaints.  Generally I push people more towards the FWC.  That being said, there’s no harm in doing both.

Where can you get help?

Being a lawyer, I have a pretty good handle on what they charge, and they aren’t cheap.  I would always start by calling the Legal Aid helpline for your state or territory.  If they do employment law and you are eligible for their assistance, they will get you to fill out an application form to have a lawyer represent you.  Just beware – the assessment process for some states can take a very long time.  Last I heard from NSW, it was taking 6 weeks.  Smaller jurisdictions may be quicker.  The point is, if it is an unfair dismissal application, start it yourself and don’t wait for Legal Aid.

However, even if Legal Aid can’t represent you, they can at least give you some information over the phone to point you in the right direction.

TAS – 1300 366 611

VIC – 1300 792 387

NSW – 1300 888 529

ACT – 1300 654 314

QLD – 1300 651 188

NT – 1800 019 343

WA – 1300 650 579

SA – 1300 366 424

If they can’t assist you enough, call the Law Society for your state or territory.  They are obligated to give you a referral to a law firm.  Ask specifically for lawyers who do a no-win no-fee arrangement.  That way, if you aren’t successful, you won’t end up whacked with a big legal bill on top of no job.  If you do win, they’ll simply take their fee out of your compensation (if you are compensated).  It’s also worth asking the Law Society about pro bono help.  That’s where private law firms help you out for free, usually because you can’t afford them but still have a good case.  It’s a good option if you earn too much or have too many assets to qualify for ongoing help but can’t afford a lawyer (which is the vast majority of people, to be quite honest).

 

I hope that’s a not-too complicated summary of what the law says and what you can do if you experience discrimination at work because of your endometriosis.  Has anyone been through the legal system for something similar?  Have you been discriminated against because of your illness?