The language of ableism

CW: ableism, transphobia, suicide mention, racism

So, you know how you like one post about cats on facebook, and then you only get posts about cats in your feed after that, whether you like it or not? Well, recently facebook did that to me with a bunch of posts about people with disabilities. And that’s fine – I don’t mind having a feed with disabled people doing cool things. What I mind are the comments.

I’m going to take you through three of the posts I read and how some of the comments were problematic, because I really, really, really want people to understand that their words matter. I also hope the sheer number of comments on these posts demonstrates just how wide-spread these attitudes are.

The first post was a video about a promising 8-year-old US gymnast with no legs, Paige Calendine. It was posted by one of those pages that curates ‘feelgood’ stuff, and captioned ‘There’s nothing impossible when you want to follow your dreams.’ The second was a video of a talented Japanese violinist, Manami Ito, who lost one arm to a car accident and now uses a prosthetic to play. The third was about a US athlete/body builder called Woody Belfort, who runs ‘aspire to inspire’, and uses a wheelchair due to cerebral palsy.

Some examples of the comments on the video about Paige (please note that I have edited these comments in some places for length/clarity; however, I have not removed anything critical to context):

  • “She is an example that there is no such things as a physical disability it all in your head as long as you have a strong mental aptitude you can do whatever you want it might be a little hard but it is possible.”
  • “Inspiration to us all that nothing is impossible when you put your mind to it.”
  • “Anyone who says they can’t do something needs to look at those who were never supposed to achieve anything. We can do anything we want and I hope they look at this girl who doesn’t believe she’s handicapped. To her its another challenge in life.”
  • With all the negativity around at the moment what a joy to see someone with REAL hardship being such an inspiration.”
  • “If only our young could be as positive about life as this young lady. They don’t seem to cope with just being alive let alone any of life’s hurdles.”
  • “She is absolutely amazing. I see no disability at all.”
  • “Way to go! If you believe in your self you can do anything you set your mind to.”
  • “This is why I dislike the term disability as this young girl has far more ability than I do 🙂 keep proving the world wrong girl”
  • “She is very special Doesn’t let her handicap get in her ways she just follows her dreams”
  • “What a brave young girl with ambition despite her disability. I am sure one day she will succeed.”
  • “What an inspiration. go girl” (Many other variations on this theme)
  • “When your child says I can’t do that show them this video”
  • “What an inspiration ! Never let anyone say you can’t do that!”
  • “All the snowflakes should look at this sweet girl who didn’t let anything stand in her way. Sweet girl best of luck to you as your inspirational life continues.”

It went on that way for hundreds of comments. All were basically variations on the same two themes: Paige is an inspiration, and nothing can stop you if you just believe in yourself. A third, less prevalent theme was the idea that people with any problem less significant than being born without legs really don’t have any room to complain about anything, possibly ever.

The comments on the video of Ms Ito were similar:

  • “My father always said “Where there is a will there is a way.” I hear that quite often in my head.”
  • “This girl is a true inspiration. Her message is Nothing is impossible is you are determined”
  • “I am humbled my so called problems are nothing amazing video and performer”
  • “This is a shining example to people who say I can’t…….physical limitations should not your passion…amazing !!!!!”
  • “This redeems my faith in human nature. I’ve fought debilitating MS since the day of 9/11 & to see such a heroic task, it makes me realise my MS could be so much worse; just saying.”
  • “A very talented young lady who has worked hard to overcome her handicap.”
  • “Inspiring lady what a talent she has. Excellent. And people whinge about their lives we don’t know how lucky we are to have our limbs unlike some.”
  • “I don’t wish to focus on how hard her life is, but to admire her for the will and determination to overcome her obstacles and do what she wanted to do.”
  • “Her joy and gratitude of praise cannot be contained and she made a wonderful expression of it amidst her handicap. Conclusion, if she has that joy and gratitude why can’t we?”
  • “Amazing, now the trans that want us to adjust for them and have no physical impairment at least nothing comparable. But this Amazing girl makes her own and is magnificent. Grow the hell up the small and I mean small majority oh wait I mean minority that never learned how to work. You are so out numbered. It’s time you stay in your place!!!!!”
  • “Apparently, CAN’T” is not in her vocabulary.”
  • “Seeing this I feel that the definition of hardships should be rewritten.”
  • “Anything is possible. Believe! Faith and opportunity will be. Again, he can who thinks he can. This was written in my elementary school autograph book.”
  • “Incredible! She is a living proof that as long as we set our minds on achieving anything, we can be successful regardless of any setbacks.”
  • Awesome brings tears to my eyes! I am always fascinated with the way handicapped Children find to excell and we wine about everything!”
  • “I do really salute her cause despite of her disabilities she chose to live normally, happily and productive ,while some normal people keep complaining about their lives when it gets rough and worst is that some ended by committing suicide. For my 30years of existence I’d never heard someone who has disabilities commit suicide but only heard and saw that they are very talented they played guitar ,piano , violin ,can read ,can walked by themselves and so on and my huge respect goes to them. And my final thoughts was that i felt envy to her cause i have no disabilities but can’t play the guitar which she is good at 😦 :). But somehow I can play a guitar and that is what makes me proud of. 🙂 Go girl!keep being angelic and inspiration especially to hose normal people who has been into depression.”
  • “When there is a will”
  • “Them does eat dog an frog so what she doing not hard”
  • “She’s lucky she has a robot arm. I know a lot of people with no limbs who don’t have that privilege. AND they can still play the violin. With their feet”

Here are some of the comments on Mr Belfort’s feats (which include rock-climbing and weight-lifting), which followed some different themes:

  • “This is very inspirational…much respect to his determination, dedication and hard work. This man doesn’t have a victim mentality or the spirit of a quitter.”
  • “I’m so embarrassed……..when I complain about, sore legs, sore arms, to cold, to hot, not enough time….etc etc…this dude has completely changed the way I think….RESPECT!!!!!!!”
  • “AMAZING!!!! Mind over matter and his mind doesn’t dwell on the condition of his legs! A true inspiration!”
  • “This dude is phenomenal!! He didn’t let any disability hold him back!”
  • “He’s not disabled” (Same commenter also said “he isn’t crippled” and “he’s not freaking disabled”)
  • “How does he hold his legs straight outward if he is paralyzed?”
  • “Wheelchair bound or not, what he does is amazing and inspirational”
  • “Prayers and willpower can accomplish so many things in life don’t stop keep on going you were definitely live in each day to the fullest you truly don’t see yourself as a handicap and that’s what’s got me this for I believe You are a inspiration to others”
  • “This person is amazing. What an inspiration. There are no excuses only how much determination do you have.”
  • “People like this should make us all truly appreciate, value and reflect on all we have and are capable of doing! So many reasons and excuses why we “can’t” do XYZ…”
  • “He does things that I labelled able bodied cannot do. That only cements the notion “disability is not inability” With appropriate environment, everyone can function perfectly”
  • “Genuinely not hating at all, but I’d call him strong, not incredible. Everyone has their disabilities one way or another, and to succeed we have to overcome them. Save the world incredible for those doings things to help others.””He’s showing boys and girls who are in wheel chairs a positive role model & that they are not limited by a disability.”
  • “He’s teaching others not to feel sorry for themselves even if your current situation is not ideal of perfect to just make the best from what you have and nothing is impossible if you put your mind to it!!!”
  • “If he can bend his knees he can move his hips to walk? I am just asking because he has so much strength i believe he could will himself to walk”
  • “first of all big respect to this guy. Inspiring great work..but I can’t see no reason for him to be in a wheelchair.”
  • “He can move his legs so why if he in a Hegel Chair”
  • “I’m not convinced he’s fully paralyzed”
  • “Ok, seriously if he unstraps the wheelchair at this point he could walk if he wanted to, at least hop on one foot, by sheer will alone!! Incredible….! And we have the nerve to make excuses”
  • “The next time someone tells me they can’t I’m going to refer to this guy! He is amazing!!”
  • “His mind is stronger than his body. This guy is awesome. My mind is not as strong as his. So I feel I am mindicapped instead.”
  • “I noticed he can move and control his legs, so why would he be in a wheelchair????”
  • “That just goes to show that you can do anything despite your disability or anything like that don’t let nothing stop you despite of yourself”
  • “Example To the complainers . If this man can be doing this instead of complaining how much more you.”
  • “What do I have to complain about?? Nothing when I see people like this doing so well with less than me.I can use my legs!”
  • “How is he moving his legs and still needs a wheelchair?”
  • “instead of this, he should focus on any desk work, so he no need to move. if he can’t walk, his energy goes to his brain so it would work better than others.”
  • “Is he disabled I see him bending at the waist and bending his knees”

All of them go on and on like this for bajillions of comments. I’ve probably gone overboard in showing you this many, but I really wanted to try and make it clear how common these attitudes are.

Now, buckle in, because I am about to go on a rant about why exactly these comments are a problem.

These comments basically fall into the following categories:

  • This disabled person is an inspiration
  • Mind over matter
  • This person is strong/talented/has abilities, so they aren’t disabled (because disability is a bad word)
  • This issue is bad, so that issue isn’t
  • Using a conversation about a disability to promote a random bigotry
  • This person doesn’t fit my ideas about disability, so they aren’t disabled

And, there’s an added bonus at the end that I haven’t provided examples of yet, but will later: “My ideas about disability as an able-bodied person matter more than yours as a disabled person.”

Let’s start breaking it down.

This disabled person is an inspiration!

I’ve talked before about disabled people and inspiration porn. Tl;dr – the perfect disabled person is usually visibly disabled, but has unending optimism and has managed to ‘overcome’ their disability by doing something you wouldn’t expect them to be able to do (like Paige, Ms Ito and Mr Belfort). This allows people to put them on pedestals, and treat them as inspiring.

Now, what I’m about to say about how this is a problem doesn’t necessarily apply to Mr Belfort. He makes it his mission to inspire people – disabled or not, as I understand it – to push their limits, train hard, and smash their fitness goals. That’s fantastic. He has consented to being an inspiration. He works for it.

But Paige and Ms Ito haven’t. They both have passions – gymnastics and violin. They want to be able to pursue those passions. However, let’s be very clear about one thing: the world will never see them as a gymnast and a violinist. They will see them as a legless gymnast and a one-armed violinist. They aren’t every going to be allowed to be ‘normal’ in that context. Simone Byles may be an inspiration to other aspiring gymnasts, but she isn’t generally described as inspirational to society, despite her incredible talent and physical prowess, because she is able-bodied. However, whenever society sees a disabled person doing something that lots of other non-disabled people do that disabled person is automatically an inspiration.

The biggest problem is, that isn’t confined to people displayed particular talents. Disabled people are called inspirational simply for living their lives. Disabled children are “inspirational” for going to school and having friends – doing things that, absent a disability, no one would consider remarkable. Disabled adults are “inspirational” for driving and having jobs. It doesn’t seem to occur to people that putting disabled people up on a pedestal like this is highlighting our differences and singling us out for simply trying to exist in society, pursue our passions and live our best lives, just like everybody else. It’s ‘othering’ us. It makes us more alien. It makes us less human. It is also downright patronising when it suggests we are exceptional simply for existing.

People with endo often fight through pain every single day, because they have to. Rather than calling them inspirational, perhaps we could consider ways to make their lives a little easier – which ties into the second problematic response:

Mind over matter!

Like many of the problematic responses on this list, this one ties into the first category. It is displayed in comments above like “nothing is impossible when you put your mind to it!” Well, in the inimitable words of Stella Young, “no amount of smiling at a flight of stairs has ever made it turn into a ramp. Ever.” (And if you haven’t watched that Stella Young video I’ve linked, go and do it. Now. It kind of makes my whole post a bit pointless because she covers all of this beautifully, concisely and hilariously.)

Mind over matter is problematic in three ways: first, it ignores the very real limitations on people with disabilities that do, in fact, make some things impossible. Second, it suggests that any difficulties faced by disabled people are the disabled person’s fault for not being sufficiently determined. Third, it takes the onus off society to make any kind of accommodation for disabled people, because it suggests that our problems are ones that we can fix. But, as Stella Young points out, we are often more disabled by a society that can’t accommodate than by our own disabilities.

Let me give you an example. Blind and visually impaired people are often prevented from doing things that are super easy for those of us with better vision, because the world often forgets that people with vision impairments exist. Stop for a moment, though, and imagine a world in which everyone captioned their pictures with an imagine description, offered audio-descriptive functions, used CamelCase in their hashtags so screen readers could pick up on them, and printed their materials – whether books, brochures or menus – with braille as well as text. I’m not saying that is a full list of structural inequalities making life more difficult for the blind or vision impaired, but they are relatively small actions that society at large could take to remove some barriers. However, if we say, “no, blind people just need to try harder to overcome these barriers. It’s not on us,” then nothing will ever change.

This person is not disabled, because being disabled is bad

In large part, I think, this is due to people believing that disabled is a bad word. Read this quote from Paige Calendine’s father:

“Because she was born without legs, she doesn’t know it’s a disability,” Sean explained. “We decided right away that we would not treat her like she has a disability or make things easy for her. We wanted her to learn how to adjust to the real world.”

I’m sure you can see a smattering of the problems I talked about above in that last sentence, but let’s focus on the other things he says for now.

The only reason you can have for not wanting someone to think they have a disability, or for not wanting to treat someone like they have a disability, even when they literally have no legs, is because you think disability is a bad thing.

Now, I’m not going to pretend being disabled is a barrel of laughs. The reality of having a disability often sucks beyond the telling of it. However, that’s not what people mean when they say “you aren’t disabled!” They mean, “don’t call yourself disabled, because I think disabled means ‘less than'”. If people didn’t perceive the label “disabled” as meaning something not quite the same as real people, as normal people, I think we’d have a lot less of a problem embracing ‘disabled’ as a simple factual description, like ‘brunette’ or ‘teenager’. We need to stop loading it up with value judgements.

This is present in all the comments above claiming people can’t be disabled if they aren’t sufficiently inhibited by their disability – if you seem like you can do ‘normal’ things, you can’t be disabled, because disabled people aren’t normal. I’ve seen it myself in real life – even though my illness has real impacts that do, in fact, disable me in sometimes very obvious ways (for example, when I need to use a wheelchair), I am a relatively functional member of society. I’m articulate, intelligent, highly educated, and I dress well. My body looks like most abled bodies. People are shocked and uncomfortable when I claim the label disabled, and they often can’t explain why, but it is clear they think I am accepting a negative label, akin to calling myself a bad person (people do the same with the descriptor ‘fat’, although that deserves a post of its own).

It shouldn’t be this way. No one should have to feel that there is a sense of shame or inequality associated with embracing a word that describes exactly what they are.

This issue is bad, so that issue isn’t

Anyone who has ever complained about anything has been told this at some, point, I think. You don’t like your meal? How dare you! There are starving children in Africa! You got a C on an assignment you worked really hard for? You should be grateful you aren’t stupid like some children – Emma only got a D. You have endometriosis and have to suffer debilitating pain for the rest of your life? Cheer up! It’s not cancer!

There’s three problems with this sort of nonsense, of course.

First, it’s totally illogical to think that we can only measure our feelings by what other people have. If I can’t be sad about something going wrong at work because at least I have a job, would I be prevented from being happy about winning $5,000 on a Scratchie (I wish) because someone else won the Lotto and got $5 million? Of course not! So why am I not allowed to be sad about a bad thing just because other bad things also exist?

Second, another bad thing happening does absolutely nothing to make my bad thing less painful or depressing. If I break my arm, learning that someone else broke both arms isn’t going to make my broken arm hurt any less. Similarly, knowing that at least two other people in my life have had to endure the horrific trials of cancer doesn’t make my endometriosis any easier to deal with. Saying “at least it’s not” doesn’t reduce anyone’s pain, and it isn’t helpful. And yet people continue to do it to others and themselves. Look at the person above minimising their MS because they have all their limbs. MS can be an incredibly difficult disease to deal with! You’re allowed to have negative feelings about its very real impact on your life, no matter how many other people are missing limbs!

Third, as Stella Young outlines in her video, it objectifies the people who ‘have it worse’. Imagine being Emma and overhearing David’s mummy telling him he’s not as stupid as her. Imagine being the disabled person, going about their business, happy with your life, and basically being told that your situation is so pitiable that people should be glad not to be you. Can you imagine how it feels? You’re not a person in that moment. You’re a lesson for other people about how much life could really suck.

Super hurtful. Stop minimising people’s pain. Stop using people as lessons about how terrible life can be. Stop it.

Using a conversation about a disability to promote a random bigotry

You saw the comments up there using videos about disability (however wrongheaded) as a vehicle to promote transphobia and racism. There’s never an excuse for that. Disability is not an excuse for that. Using other people’s disability as an excuse for that makes you a bad person.

This person doesn’t fit my ideas about disability, so they aren’t disabled

Hopefully some of the comments on Mr Belfort’s video with people questioning whether or not he is disabled have demonstrated how limited people’s perceptions of disability are. If they are to be believed, if you can use your legs for anything, you can walk, and if you can walk, you don’t need a wheelchair. In fact, the majority of wheelchair users have at least some leg function. I have used a wheelchair in the past, even though I have no leg or spine issues, because a wheelchair is a tool that improves mobility and I needed it.

This is an issue that isn’t confined to wheelchair users, of course. People with disabled stickers on their cars, people asking if they can take a seat on the bus, anyone with an invisible illness who needs an accommodation – at some point we all run into the “you aren’t disabled” nonsense. Society requires disability to fit a limited set of preconceived ideas to be valid.

This is a huge problem for people with invisible disabilities. People with with disabled stickers on their car are often the target of harassment by well-meaning busybodies who want to defend the integrity of the disabled parking spot by saving it for people with “real” disabilities. Disability can look like it does in the videos above, or it can also look like me and a myriad of other “normal” people. Yet us ostensibly “normal” people can suffer excruciating pain or overwhelming fatigue if we have to push beyond our limits, such as having to walk too far with heavy shopping, or not being able to sit down on a thirty-minute bus journey.

If someone tells you they are disabled, you do not get to decide they are not. This leads me handily to my next and final point…

Don’t argue!

On some of these videos, a number of disabled people and their loved ones fought back against some of the problematic comments above, linking to the Stella Young video, pointing out that their disabilities carried real limitations, and objecting to being called inspirational.

And of course, because this is the internet, everyone listened to the people affected by these issues, reconsidered their position and acted with more consideration in future.

LOL! Wouldn’t that be nice?

Instead, commenters called the disabled people and their allies overly negative, overly critical, deliberately looking for problems or things to take offence to, sensitive, and continued to :

  • use language like “physical deformity” and “crippled”;
  • refuse to accept that ‘disabled’ is not an insult;
  • assert that the true disability is our attitudes;
  • frame objectification as complimentary; and
  • accuse us of playing the victim.

I was always amused, as a lawyer, when clients without any legal qualifications at all tried to explain the law to me. I’m less amused, as a disabled person, when I see people without a disability try and tell disabled people how we should think, feel, and experience our disabilities.

Here’s a tip: if you have no relevant experience in an area, don’t try and talk over those who do. It’s deeply condescending, hurtful, and just plain ignorant.

So, this has been a very long post! Congratulations and thank you if you are still with me. I would love to hear your thoughts in the comments, and to hear from any disabled people who have experienced this in real life. I think collecting our stories is vitally important to demonstrate just how pervasive and harmful these attitudes can be.

Disability and Disasters

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.

Decisions, Decisions, Part I: Employment

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.

Lifeline’s Response

A few weeks ago I wrote a letter to Lifeline about one of their Australian ads (you can read it here).  They have now responded.

The email reads:

“Thank you for providing your feedback about the Lifeline HOPE billboards.  I am so sorry that they have made you feel the way they do, this is certainly not our intention.  We had aimed to provide a strong message of hope, which is the undercurrent of all our communication campaigns.  To date, I have received plenty of positive feedback about this campaign, your feedback is the first negative, but it has weighed on me heavily. Thank you for taking the time.

The intention behind the poster was that people would see the ad and be encouraged to hold on with HOPE for whatever the reason may be that they need it.  In doing so, I had hoped to encourage a more compassionate Australia. For those in chronic pain, I had hoped to impart hope in the continuing advancement in scientific discovery and the dedicated medical teams who are working in the field. The furthest thing from my intention is to cause anyone harm or to experience isolation.

Ella, this ad placement has been provided pro bono, so I am unable to change where it is placed or how often.  I can give you the undertaking though that the next iteration of  posters I am given the opportunity to post I will ensure there is a different hopeful message.

I am sorry for the distress this has caused you, I hope my response will give you some solace.

Kind regards

Ina”

Ina is the National Manager of Communications and Public Affairs for Lifeline.

Whilst I still think the ad is deeply insensitive and demonstrates a lack of thought, and I don’t buy the “continuing advancement in scientific discovery” thing (anyone with a chronic illness knows that waiting for medical advances is about as hopeful as waiting for a tsunami in the Gobi Desert), I am gratified to have received a reply.  I also very much appreciate the apology.  I do hope that they bear the message in mind and give thought to those of us with chronic pain in future ad campaigns.

I strongly encourage anyone with the spoons to call out ableism or exclusion when they see it.  People without intimate experience of disability or chronic pain don’t even think to double check on whether their language or actions are inclusive – goodness knows I rarely did prior to actually having endometriosis and working to educate myself.  Every time we point it out is hopefully a time the other person goes away to think about it and takes the time to educate themselves and change their behaviour in future, and hopefully become an advocate for us as well.

Keep on keeping on, endo warriors.

Save These For Future Use, Part 1

Last week I shared some quotable quotes I found on Pinterest about life with chronic illness.  Visitors to my Pinterest board, however, will also see more than just funnies and sads.  I like to save things that really capture some of the more difficult aspects of endo and chronic illness that I sometimes really struggle to articulate myself.  I’ve rounded up 10 of my favourites that you may find useful to keep around for when words fail you but you still need to explain something.  Because this post is very long, I’ve split it into two groups of 5.

Just a heads up – because I am doing image descriptions for all of these posts, this is going to look even longer than it is.  Just skip the descriptions if you don’t need them.

1)  A pain scale we can all understand

Chronic Pain Scale

With this image I’m just going to summarise the useful part, which is the pain scale (it’s surrounded by tumblr posts of people describing their issues with the conventional scale).

“10 – Unable to Move – I am in bed and can’t move due to my pain.  I need someone to take me to the emergency room to get help for my pain.

9 – Severe – My pain is all that I can think about.  I can barely talk or move because of the pain.

8 – Intense.  My pain is so severe that it is hard to think of anything else.  Talking and listening are difficult.

7 – Unmanageable.  I am in pain all the time.  It keeps me from doing most activities.

6 – Distressing – I think about my pain all of the time.  I give up many activities because of my pain.

5 – Distracting – I think about my pain most of the time.  I cannot do some of the activities I need to do each day because of the pain.

4 – Moderate – I am constantly aware of my pain but I can continue most activities.

3 – Uncomfortable – My pain bothers me but I can ignore it most of the time.

2 – Mild – I have a low level of pain.  I am aware of my pain only when I pay attention to it.

1 – Minimal – My pain is hardly noticeable.

0 – No pain – I have no pain.”

I know I’m not the only one who has gone to hospital, been asked what their pain is out of 10, where 10 is the worst pain imaginable, and thought, “how does this help anybody?”  My 10 is not the same as another person’s 10.  It doesn’t convey the actual effect of the pain on my body.  It doesn’t take into account that I have a really vivid imagination, so I’ll never rate it at 10 because it might get worse and then I’ve just broken the scale.  And is the scale linear or logarithmic?  HOW DOES IT WORK?

Now, I don’t think the scale above is perfect, but I think it might be really helpful for people with chronic pain to use as an outline for their own.  You could make a little flashcard and take it to hospital with you, so you can show it to medical professionals and make sure that you are on the same page about what the numbers mean.

In addition to making sure you and your treating team understand each other, it provides you with a consistent reference point, and it also helps demonstrate that you have actually thought about this and aren’t exaggerating.  Like many people with chronic pain, I push through it on a daily basis and the people around me have no idea that I am dealing with, say, a level 5.  My face doesn’t crack, my posture doesn’t slump.  I carry that through to hospital, where I am quiet and calm externally even though I can barely think.  I will giggle at things on facebook to distract me and make my mum watch cute cat videos with me.  I can fall asleep despite really bad pain, because pain is very exhausting.  I know that it consequently reads as me exaggerating when I say that my pain is an 8.  Having this scale allows them to know that I am not plucking numbers from thin air; I have outlined the effect the pain is having on me and made a considered decision about where it is.

Better yet, wouldn’t it be great if hospitals had charts like this so we know all the doctors are operating off the same scale?

2) What being able to work really means

A tumblr thread that reads:

mmmyoursquid: |People love to talk about whether or not disabled people can work 

but if you can work just fine and your disability is destrying your ability to have a life outsdie of work (because work takes all your energy and more)

Dead silence.  Nobody cares.”

eenymeenypia: “File this under, of you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) to get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.

chameleonchild: “This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours aof activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.  

Far too often abled people see the things they do as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.

mmmyoursquid: “reblog bc the non activities thing seems really important words.”

I think this possibly sums up the concept of spoons in a way that is even more understandable for the average person.  On your average week, my life is to go to work as many days as I can manage, drag myself to the gym twice a week if I’m lucky, and spend the weekend recovering.  Some weeks I have to attend out-of-hours meetings (and some weeks I can’t manage it).  If I’m having a period of real wellness, I will join my husband in a daily dog walk.

Notice the things I’m not doing here – cooking, cleaning the house, or shopping for groceries.  Basic household stuff.  If I want to have a shower or bath, I’m definitely not walking the dog.  The only reason I manage to bath after the gym is because I get a temporary adrenaline high, which I often pay for afterwards.  I tend to only socialise on long weekends or when I’m having a really, really good week.

I am lucky.  I have more “useable hours” than many people.  However, I honestly don’t remember how I used to manage to do so much between leaving work and going to bed.  It baffles me that other people use their after work hours for more than resting and watching Star Trek.  Health and vigour seem like wonderful things.  I seriously worry for my fellow endo-warriors, though, who need to apply for the DSP, but can manage three hours of activity per day and are therefore assumed to be able to work three hours per day.  Our society puts far too much focus on productivity and not nearly enough on quality of life, even in our allegedly laid-back Australian culture.  The idea of lifters and leaners glorifies those who push through pain and exhaustion, and is of course perpetuated by those who don’t know what chronic pain and fatigue is actually like.

3) Changed lives

Image reads: “I think one of the most emotionally hard things to come to grips with, in terms of chronic illness, is wondering who I would have been without it.  I was walking a specific path that got 130% re-routed when I got sick.  And it feels like I’m in this bizarre, alternate, half baked version of my real life.  And as much as I desperately want to get back on the track I was on before, even more, I want to know where that path would have led.  Who would I have been?  What could I have been?  We always wonder what we’ll be when we grow up, and I feel like I was robbed of ever finding out.”

I think this is a really good way of explaining to people why chronic illness makes you sad.  You are in mourning for the person you could have been, or thought you were going to be.  I think it can be a tricky concept to explain.

I remember that my life was pretty much going the way I wanted until 2016, when my immune system basically packed it in and caused massive absences for around 4 months because I just got sinus infection after sinus infection, and then it carried into 2017 when my first operation went wildly wrong.  It delayed my progression from paralegal to lawyer, and then prevented my movement from civil lawyer who did family law stuff to full-time family lawyer, which was the course I wanted to take, and then took me out of litigation entirely at the end of last year.  Now I’m facing the possibility of a child much earlier than I wanted, followed by a hysterectomy.  Whilst I have enjoyed the new job, I would love to be able to go back to where those two futures branched off and see what lay down the path I couldn’t take.  Would I be making a name for myself as a good advocate?  Would children still be a distant one-day?  Would I have been able to travel the world like my husband and I wanted?

4) The in-between

it sucks too because nobody believes you. you are so alone and you have no peace no relief. At some point you even consider  suicide as your way to peace.

Image reads: “A chronic illness phenomenon

I think there’s this weird phenomenon in life, specifically in the chronic illness community.  It’s a place some of us get stuck in – the in between.  A place where you’re too sick to function in the “able world” but at the same time you seem to [sic] healthy for the chronic illness world.  You almost faint but you don’t.  You’re always in pain it’s relatively tolerable.  You’re not bad enough to qualify for surgery even though you’d benefit. You forget everything but you don’t lose time.  Your heart rate is too high to be normal but not high enough to be critical.  Your BP is low but not THAT low.  You try to find answers but seem relatively okay to doctors so they don’t want to run more tests.  You’re stuck in a place where you almost wish you were sicker so you could get helpful treatment.”  

This one goes out to everyone with endo who has been curled up on the floor with a heat-pack crying from pain, but hasn’t gone to hospital because they know doctors won’t really do anything.  This one is for everyone who has left an appointment feeling utterly invalidated or like they are over-exaggerating because their pain is just serious enough to change and ruin their lives, but not serious enough for the doctor to bother with.  This is for everyone who has wished that their ovary could explode or their uterus produce actual fireworks so that someone might take them seriously and help.

I’ve been in the in-between – I live there, I think – and it just sucks.

5) It is more than pain

Image reads: “It’s not the pain, it’s the not knowing when it’s going to stop, it’s the suffering, it’s the way people look at you as if you’re find, it’s the medical professionals not believing you, it’s the drug induced dulling of the senses, it’s the longing to do what you used to do, it’s the loss of mobility, the loss of dignity, the loss of self worth, it’s letting down your nearest and dearest when they need you, it’s the dark and lonely nights when sleep eludes you, it’s the long and lonely days when movement is difficult, AND then there’s the pain on top of it all”.  

Have you ever tried to explain what chronic illness is like to someone and then thought, I cannot possibly convey this?  I think this little post does it pretty well.  I don’t think people get that it is sooo much more than just pain.  I’ve had to take days off when my pain is actually relatively tolerable, because my other symptoms are just so overwhelming that I can’t function.  Fatigue is the biggest one.  I’ve had days where I have turned my alarm off and fallen asleep again before my hand has even left the button, and then woken up and been so exhausted I literally can’t move, even though I know that time is slipping away and I’m going to be late.  I’ve had to take days off where my drugs are working ok, but I’m experiencing all the horrible side-effects and I can’t act like a human being.  I’ve had to take days off where the pain is mild but the swelling is so huge I literally can’t bear the sensation of clothes pressing on it and so I couldn’t get dressed.  Once I had to turn up to work (when I was still in litigation) in a floor-length black maxi dress because it was the only thing I had that was loose enough not to cause problems but wasn’t pyjamas.  I couldn’t go to court or see clients, of course.

Chronic illness is a pile of problems, little and large, and one day I might just have to sit down and list them all out because I feel like that is the only way to properly explain the frustration of it.  In the meantime, I think this little tumblr post does a very good job.

 

I hope that this collation of posts and images will be helpful for you in conveying a better understanding of chronic illness to friends, family and treating teams on days when you can’t find the words yourself.

Stay tuned for Part 2.

February Gratitude

CW: pregnancy, body image

As I mentioned in January, one post I really want to try and commit to each month this year is a list of things I am grateful for.  It is actually quite challenging.  Although I’m generally a positive person who lives life at a level I would call “content”, and only occasionally swing into bouts of terror and sadness, this is quite a challenge for me, particularly since I want to put my animals and my family on every list and I have set myself the challenge to be grateful for new things every month.  Anything that stretches my ability to be grateful, however, I suspect is a good challenge.  Practice, after all, makes perfect.

1)  fLash Lash

This may sound terribly superficial, but since we’ve already established that I am I’m going to plough right ahead anyway.  My friend put me on to this lash serum.  I was really sceptical at first because the idea of a lash serum just sounds really gimmicky to me.  However, I’ve been using it for about a month now, and it works!  My lashes are actually longer.  I tried to take a before and after, but unfortunately my before is really blurry so it’s extremely hard to see any sort of difference.  The difference isn’t huge – certainly nothing as dramatic as the pictures on the website –  but it is noticeable, and I love it.  I will definitely be repurchasing this one.  (And no, sadly this is not a sponsored post and I do not get any money from spruiking the wonders of fLash Lash).

2) Maternity jeans

I’m not pregnant, but I am now a sworn devotee of maternity jeans.  I’ve never actually tried them before, although I have written about them as I know other endo-warriors who wear them.  Now I’m not sure I ever want to wear anything else.  I tried on this pair yesterday and was blown away.

A1308027
Image description: a pair of legs wearing black skinny jeans with a rip on each knee standing in a Scandi-style room with a white crib.  There is a wooden window seat next to the legs with a cream cushion and a grey throw.

They look like jeans, but they feel like leggings and they are so soft and comfy on the belly.  They are actually quite flattering, and I say this as someone who has always felt very self-conscious about the width of her hips in leggings and skinny jeans.  With a pair of biker boots they are positively badass.  Badass comfort – what more could you possibly want?  You could fight crime and look cool in these things.

3)  New friends

Whilst I still miss my friends from my old workplace, particularly my fLash Lash friend and another lovely woman who left a few months before I did, I am delighted to have found such incredible people at my new job.  They are mostly women, and they are all wonderful – friendly, helpful, chatty, hardworking, collaborative, and always up for a jaunt to the local coffee shop or grocer.  They’ve made me feel so at home.  Great colleagues make for a great job even when the work isn’t tops, and I love the work too, so it’s great all round.

4)  My employer’s attitude to disability

Although I have thankfully not had to put it to the test in a “I’ve only worked three hours in the last month” sort of way, my employer so far seems really pro-disability and supportive of disabled staff.  We get personalised desk assessments (everyone, disabled or otherwise) and if you have a pre-existing condition they get in a physio or other specialist to do it.  Mine has resulted in a better chair and an extra plug so I can have my electric heat pack plugged in at my desk.  This means no more awkward trips to and from the kitchen every forty minutes juggling a piping hot wheat bag that will be painfully hot at first and then cool down annoyingly quickly.  This hugely increases my ability to stay at my desk working.  It makes such a difference.

5)  Cool weather

I don’t do terribly well in the heat.  I am too white for days much above 30 degrees.  I like a gentle cool breeze on a warm 27-28 degree day.  English summers are largely perfect, in my eyes.  Summers here are dry and baking and seem to parch the moisture right out of you, except when it is stormy in which case they are hot and sweaty but still leave you really thirsty and dry on the inside.  Thankfully, February has largely seen a move to more gentle temperatures.  As I write this, we’re expecting a top of 24.  Perfect.  Love it.  I know I’ll be having the opposite feeling come winter, but right now I’m happy as the proverbial clam.

6)  Nice hair

It’s not always nice, but yesterday I got a haircut and now it’s just spiffy.  It’s great while it lasts and it makes me happy.  It smells nice, too.

7)  Adventurous tomatoes

I didn’t plant any tomatoes this year.  My plants just ran riot last year and I had more tomatoes than I could comprehend, so I thought I’d give them a miss this year.  Despite this, I have four or five tomato plants sprouting in the garden, including one that is growing in the cracks of the pavement again.  They are plucky and determined plants, and I’m actually pretty excited because I do like tomatoes.  I also have a single brave chili growing in my Vegepod.  I’d forgotten I even planted chillis (did I plant chillis?  Is it even a chilli?  We’ll find out when I cut it open, I suppose).

IMG_3818
Image description: my hand, holding six slightly oval little tomatoes.  One has a green stem on it.  There is dirt on some of them and on my fingers because they are fresh from the garden.

8)  Valentine’s Day

Like most people, I’m not a huge fan of the commercialism that inevitably springs up around days like this.  However, I am a fan of the idea of love persevering, and a brave man helping couples marry in secret.  I also like the reminder it brings to have a special date with my husband and take an evening to really cherish our relationship.  We’ve endured a lot together and it’s really important for us to make happy memories too.

9)  The Done app

As you may know from my previous mention of my dairies, I’ve switched from a bullet journal to a more traditional (but also very fullsome) planner this year.  One other thing I’ve done is make my habit tracker digital.  There’s an app called Done which allows you to track 5 habits for free, or as many as you like for $6.99.  I paid for the full suite.  I’m sticking to tracking my habits far more effectively when it’s on my phone, and it is actually easier to view trends there.

Image result for done app
Image description: text that reads, “Track any goal or Habit.  Track an activity multiple times a day, week, month or year.”  Beneath that is a grey silhouette of a phone.  On the screen it says, “Done”.  Beneath that are five bars.  A partially-filled yellow one says “Wake Up Early: 3.  This week, 03/04 mornings”.  A partially filled red one says “Workout: 5.  This month: 08/10 sessions.”  A partially-filled bright blue one says “Drink Water: 3.  Today: 04/08 glasses.”  A partially-filled lilac one says, “Meditation: 3.  Weekly: 02/03 sessions.”  A fully-filled blue one says, “Less coffee: 5.  Today: 00/02 cups max.”

When you have reached your goal for the day/week/month/whatever, the bar fully fills up.  The number on the right refers to your streak of how many days/weeks/months in a row you’ve managed the habit.  It’s quite motivating and really quick to do.

10) Finally getting over this cold (I hope)

This darn cold is dragging on and on and on, as they always do when you have an immune system as useful as the male nipple.  However, I think it might finally be going away.  I can feel something almost like energy waving a tentative hand in my direction, and my headache is only dizzying instead of catastrophic.  Progress!