Hear me.

A Facebook page I follow, recently asked those living with invisible disability:

"What's the one thing you wish people would say to you?"

It took me a long time to think of an answer. Admittedly, I have tipped over to the visible disability camp the last few years, but I still get the "but you don't look sick/disabled" comments with such frequency, that it would seem that I still fall into the not looking sick/disabled-enough camp. Go society and it's continued desire to hold on tightly to the myths and stereotypes around disability. But, I have spent enough years in the invisible camp, that it's legacy is still keenly felt.

A version of "I believe you," was sought by many. As was "What can I do to help?" I understand both of these. Belief was definitely lacking at the start, be it strangers, friends, family or medical practitioners. It was frustrating and disheartening and left me feeling alone. It also took a huge toll on my self-confidence as I internalised the lack of belief and started to doubt myself. Am I really sick? and Should I really just suck it up? were on repeat in my mind. And they were destructive. The current state of my body makes a mockery of those questions. Even at the start, passing out and a heart rate that wanted to go from bradycardia to tachycardia on a never ending loop wasn't exactly normal. Belief became my holy grail. It continues to be the holy grail for many. Sadly, even with concrete diagnosis belief can still be a missing factor. As such an expression of belief is understandably, high on the list of many.

A lack of help is another I understand only too well. As I wrote in No Casseroles for You, help is not often forthcoming for those with chronic illness, many of which are invisible. Often just like you can't see a chronic illness or disability, you cannot see its consequences. Alternately, it's chronic nature leads to care fatigue for those around us. When a disorder is measured in years or a lifetime, it is hard for many to maintain caring for that length of time. There are certain illnesses that are known as casserole illnesses. Those whose name inspire instant understanding of need and seriousness. That activate whole communities to action. And then there are those like Dysautonomia that are never, or rarely, invited to the party. Having said that, I know from friends who live with the well known casserole illnesses and, if they continue on over time, even they experience the effects of care fatigue. The inundation of initial help has an unmentioned but clearly defined shelf life. After which it dwindles away. If this happens for the well known disorders what does that mean for those of us who aren't even in the running? How I longed for someone to bring over a meal or offer to vacuum. Especially in the early days where I left work and was struggling to find medications that took the edge of my symptoms. But apart from two people, who have very generous hearts, it never eventuated. Outside of a couple of specific disorders, there were simply no services for seriously ill mum's in their 30s in my region. And living in an area with sparse general services, if family and friends didn't step up, you were left to fend for yourself.

I know all of this, but still I struggled with a response to the question.

When I sat and thought about my experiences, I realised that I don't want the people around me to say anything.

I want them to be silent.

Instead,

I want them to hear me. 

Really, hear me. 

In essence, both of the responses regarding belief and help are also about hearing. Hearing exactly what is going on. Hearing what my doctors have said. Hearing the expert knowledge I have about my life and disorder. Hearing about my needs. Not the needs you think I have. I still have vivid memories of the wall of milk that turned up on the doorstep of a family member after the loss of a loved one. Milk. We were trying to find places for milk for days. We froze it. Drank it until we were sick and threw out all we couldn't get through. I understand that people wanted to help. To do something. But 2,000 litres of milk was not a kindness. The community saw a need, but they didn't take the time to ask how that need might best be met. Even when other options were suggested, the tsunami of milk continued.

Hearing would alleviate so many problems. And part of truly hearing is active listening.

Active listening has a number of parts, but this is the one I really wish others would employ.

(University of Adelaide: Active Listening)

Illness comes with a whole host of judgments and assumptions. I should be better by now, I don't look sick or disabled enough, I just need to exercise, be more positive, I don't complain so I must be coping, I don't need help, it's not that serious, it's not like I have [insert illness of choice], if So-And-So can do it, so can you, ..... The judgements are automatic and fired off with relentless regularity. So much so they are parodied on many patient support sites.

They are so ingrained that many do not even realise that they are seeing you through that lens, or that their responses are influenced by those negative beliefs.

I don't want people to say anything in particular to me. I just want them to hear me. To actively listen when I speak. To understand that I am the expert in me and my needs. Being chronically ill is difficult, but so often it is not the illness or symptoms that end up being the hardest part to deal with. Instead it is often the reactions of others to our being ill.

I would add that we are not a homogeneous group. We do not all have the same experiences or needs. And our needs may be very different to what you would want in the same circumstances. When I hear fellow patients being told they are ungrateful for simply saying that they didn't need a particular form of help, or suggesting another way to help only to have it dismissed, it is clear that active listening has not taken place. That they have not been heard.

I know people mean well. I know they don't intend to make the lives of the invisibly ill or disabled harder. But as the old saying goes, the road to hell is paved with good intentions. Stop. Take a step back. Check your assumptions at the door. And listen.

Active listening is a skill. It is not instinctual for many, but it can be learnt. And that is a kindness to all.

Hear me.

That is the one thing I want from others.

Michelle

The Ramones, Learn to Listen, (1989)

10 Most Popular Posts for 2014

(source)

As 2014 comes to a close I thought I'd link up my Top 10 most popular posts for the year. They range from deeply personal posts to issues relating to health care, disability and chronic illness. A little something for everyone.

Thanks to everyone who has read, commented or shared my posts over the last year. And a huge thanks to all who have sent their support and good wishes through what has been a bit of a rough year healthwise. Here's to a better year ahead for all. xx


1. When being a woman is an impediment to medical care: Dysautonomia

"A quick review of patient support networks reveal a clear pattern of attributing physiological symptoms to a mental health diagnosis. And as many of the reported comments reveal, being female is a clear factor in this leap to a psychological aetiology. Comments range from being “too young”, or “too pretty”. That a “boyfriend”, “husband”, or “baby” would cure them. Other terms from “Working Women's Syndrome” to “Bored Housewife” are used. And diagnoses such as Anxiety and Depression are doled out with alarming regularity, and frequently without referral to an appropriate professional for official diagnosis or treatment."

2. Be quiet little disabled person. You're making me uncomfortable.

"Is she really surprised that PwD have a voice and can use it? That we have minds and can formulate our own opinions? That we know how to use social media? And that we are no longer content to sit back and accept the ableist behaviour of the wider community. No matter who the perpetrator or the level of their transgression?

Her reaction plays into the idea that PwD should sit back impotently and wait for others to speak and do for us. It plays into the idea that we should sit there smiling and grateful for the crumbs and pats on the head doled upon us by much of the wider community. It plays into the idea that we are incapable of having our own voice."

3. This is NOT funny.

"The idea that the only viable illness is one that lends itself to clear external markers, such as loss of hair or tubes and bandages, is so incredibly incorrect, as to make it laughable, especially given that figures for so called invisible illnesses are as high as 1 in 2 in some countries. The idea that disability is only seen in the use of a wheelchair, something unfortunately perpetuated by the most commonly used symbol for disability found on blue and white stickers worldwide, excludes millions of people in Australia alone (currently estimates are that approximately 20% of the population are living with some form of disability, only a small percentage of those are permanently in wheelchairs). The idea that only those with paralysis use wheelchairs is equally damaging to a large percentage of users who, like myself, can walk very short distances but are frequently unable to stand or walk for any substantial distance, or depending on the day, unable even to walk one or two steps."

4. Letting it go.

"I am grateful every day for those who show they care, online and in real life. For those core people who make me feel loved and safe. Who hold my hand when I need it, instead of expecting me to hold theirs because my illness is a burden to them. For those who offer their concern and care and don't tell me how much of an imposition or hardship it has been for them. For those who know what I deal with and how I deal with it, and don't flit in only to tell me how to manage my illness that they nothing about, before flitting out again. For those who give me dedicated time rather than the scraps left over from their busy lives."

5. Just to clarify.

"We see joy where you see nothing.
We find humour where you see darkness.
We smile, because our spirits shine.
Many of us thrive with illness.

I say with rather than despite, because it is part of us we can't deny, but it is not all of us. It doesn't define us. And it doesn't deserve the energy required to live despite it's presence."

6. Prove it.

"I am tired of others asking people to prove their disability. To prove that what they experience is real. That it is legitimate. I am tired that there is a continuing pervasive idea that only certain very visible issues are genuine or valid disabilities. I am over people who think that they have an instinctive right to judge the legitimacy of a person's disability. I am over people who have absolutely no expertise and no idea who suddenly feel they are experts in the field of disability and have developed some sort of superpower that enables them to identify disability at a single glance."

7. Without your health, you have nothing.

"Illness doesn't care. It doesn't care if you run 10km everyday. It doesn't care if you only eat organic. Or have never smoked or consumed alcohol. It doesn't care if you help old ladies across the street or kick kittens for fun. Good, bad or indifferent. Illness happens. Disability happens. Life happens. Genes can kick in, or accidents can occur. Yet we have so demonised the idea of illness that we fear and judge it."

8. Saturday night.

"She is sitting, bent in half on the hard toilet lid. Chest pressed to knees. The lights above beat down on the tangle of black hair on the back of her head. Pain-sweat sticks random hairs to the nape of her neck. She catches her breath with each heightened burst of pain. Cold smooth tiles anchor her feet to reality. She holds tightly onto that feeling, focussing on the texture below her heals. Overly controlled breathing, a futile attempt to control the situation. She continues to fight long after the battle is lost. Pain, misery, and lost dignity are thick in the air."

9. Stupid.

"Old familiar shoes. The story of my life. So often I fall back to what I've always done. Even when it hasn't worked. Even when it has ended up leaving me worst for wear. Since becoming ill I have teetered between trying to forge a new and more positive way of doing things and my old anally retentive, must do everything, all the time, push, push, push, way. That old way has served me well over the years. It's very familiar and very comfortable. In some ways it has worked over the last 8 years as well. It led me to a diagnosis, a good team of doctors and treatment. In many ways it has kept me going through the hardest times. But it has also been destructive in many ways."

10. It's the lack of a permit NOT that they don't 'appear' disabled.

"Here we are again with sloppy journalism that is representative of the views of the wider community. Back to the limited idea that all true disabilities are visible. The corollary of such a view is that if you can't see it, it's not a real disability.

There is a pervasive idea in the wider community that:
a) True disability is visible, most commonly involving a wheelchair.
b) That the illegal use of parking permits is rife.
c) That it is easy to obtain a parking permit.

a + b + c = people without a wheelchair, who look well, are frauds and should be called out/ridiculed/abused."

Happy New Year to all.

May 2015 bring love, joy 

and happiness.

Michelle

Prove it.

A music celebrity singles out two concert goers not standing and dancing. The concert stops and security is sent over. It turns out one was in a wheelchair and one an amputee. Satisfied the celebrity declares that it's okay then, and proceeds with the concert.

Where oh where to start?

I'm not even going to mention his name. It's all over social media at the moment and I've had my say over on my FB page. And in truth, his identity is irrelevant except to point out his incredible display of wankerism. I'm not even going to get into the argument that if you've spent your hard earned cash on a concert ticket and want to sit throughout, that it's your right to do so. But for me there is a bigger issue at play.

What this represents is yet another example of ableism and the persistent idea that disability is visible.

What if, like for many people there was no wheelchair, no cane, no prosthetic, no visible difference that signified genuine disability. What if the ailment that they live with is completely invisible and they look well to those who don't know them.

As Invisible Illness Week 2014 comes to it's conclusion we are shown a very public example of how many people envision acceptable disability.

Living with a disorder that is for the most part invisible it's hard not to imagine the singer's reaction to my sitting if I wasn't in my chair. Standing, particularly for an extended period, is incredibly difficult for those living with Dysautonomia. Standing up is said to require three times the energy required for those without autonomic dysfunction. The same issue occurs in multiple conditions. Prolonged standing for those with EDS, ME, COPD, CRPS and many other chronic and traditionally invisible conditions can be incredibly difficult.

Yet we may save up our limited energy to attend a concert. We may up our meds, rest for days, and book out days after to recover. We do all that we can to attend any events and as much as we'd like to stand and dance, we are simply stoked to be there sitting in a seat watching the singer of choice.

To be singled out and chastised for not getting up and dancing would be embarrassing to say the least. To then have to prove why you have the right to be sitting. To have a complete stranger who knows nothing about you decide that your disability is valid or not valid is dehumanising and out right rude.

Imagine if that person was only just coming to terms with their disability?

You have to stand:

"unless you got a handicap pass where you get special parking and s---,"

Ugh. Which bit of ignorance to start with? 

Why should anyone have to prove disability? Especially to a complete entitled douche who thinks he has the right to both chastise and decide who can and cannot stand at his concert.

I am tired of others asking people to prove their disability. To prove that what they experience is real. That it is legitimate. I am tired that there is a continuing pervasive idea that only certain very visible issues are genuine or valid disabilities. I am over people who think that they have an instinctive right to judge the legitimacy of a person's disability. I am over people who have absolutely no expertise and no idea who suddenly feel they are experts in the field of disability and have developed some sort of superpower that enables them to identify disability at a single glance.

I don't wish this singer ill. I don't wish him to be in my position. I don't want him to spend a day in a wheelchair, after which he can just  get up and go on with life. I don't want him to think that the only way to experience disability is to be in a wheelchair. A day or a week or a month living my life, will not give him true insight into my experience. I have been ill 24/7 for 8 years and I will continue to be ill and get worse. A day in a wheelchair will not expose him to all that entails. And frankly why should that be what is required to simply act like a decent human being.

You can have compassion without understanding. You can have decency without understanding. You don't need to know the intricacy of anothers life to treat them with respect due any human being.

Disability comes in so many shades. Some visible. Some not. Some physical. Some psychological. Some intellectual. Some in a combination of all of those. I don't wish pain, or nausea, of passing out, or anxiety, or depression, or any other issue upon him or anyone else.

But I do wish that people would pull their heads out of their arse and

a) get some perspective,
b) stop trying to judge others on false criteria
c) become educated,
d) just be a decent compassionate human being who realises that they cannot spot disability at a single glance
e) have absolutely no right to ask for proof
f) or judge in the first place.

Oh and did I mention pull their head out of their arse.

Michelle

The Murky World of Inspiration and Disability.

Inspiration has become a problematic notion of late. I think it is a rarer quality than what popular media would have us believe. Celebrity and the creation of personal wealth, are really all that are needed for to be labeled inspirational. Personal success, rather than how we improve the lives of others or leave the world a better place on our passing, our measure for inspiration and aspiration. And we focus on socially visible action, frequently missing the mark on identifying those who may be far more worthy of the title, but are the quiet achievers far away from the public eye. The word inspiration, like brave and hero, are now so overused in the mass media as to become meaningless. And when it comes to disability this becomes even more problematic.

I watched Stella Young's TED Talk discussing Inspiration Porn and being seen as inspirational simply for being disabled recently (transcript available here) and have read other pieces she has written on the topic. Much of it resonates with me. I watched her and the UK's Francesca Martinez, on morning television discussing the same issue today, and once again found myself nodding along.



Today I read a piece by New Zealander, Red Nicholson, which approached the topic from a slightly different angle and whilst there were parts I wholeheartedly agreed with (ie I am uncomfortable with the self-appointed inspirational status of some in the community. You may aim to inspire. Others may tell you that you inspire them. But you don't go around shouting to the world "Look at me. I am inspirational.") there were others that challenge my ideas on inspiration.

Nicholson's piece and Young and Martinez's views all partially fit into my ideas around inspiration and disability. But none fully hit the mark for me. In truth, I'm not sure what that mark is or if I'll even come close to finding it by the end of this post. It's a complex and evolving issue for me as I move from able-bodied living, to illness, to invisible disability, and now life with visible disability and a degenerative neurological disorder which is making it's presence very felt.

The wider public loves nothing better than an inspirational disabled person. Not just those that climb mountains, Young's Supercrip, but even a more everyday beacon of disabled inspiration.

Having been congratulated for buying milk at my local supermarket a few years back, I am well aware of the ridiculous idea that my simple daily existence is somehow inspirational. I can tell you right now I didn't feel very inspirational buying that 2litre of low fat. I did feel peeved that we had run out at home and I still hadn't had my morning cuppa. I may have even cursed the name of my offspring and my husband, who's finishing of said milk, led to my drive down to buy some that day. I'm not sure that attitude fits well with the inspirational status bestowed upon me in the dairy section by a little old lady exuding over-exaggerated delight in my achievement.

Part of the issue is that many people expect so little of the disabled in our society that simply buying a bottle of milk does becomes inspirational.

You managed to buy milk? Who knew that someone like you could do something like that?

Part of it is based upon the idea that disability is something that must be overcome. 

Would she have exclaimed at my amazing dairy purchasing powers if I had been without my walking stick and uncoordinated shuffle that day? I think not. In fact, given I have purchased thousands of litres of milk prior to becoming ill and never, in all those years, had a single person walk up to me and remark on how inspiring my purchasing skills were, I'd say no. And if a week later, on a day where I was a bit more steady and not requiring my walking stick, I would have bought that milk, she would have walked right on by without letting me know of my inspirational status. I would still be living with the same degenerative neurological condition of the previous week, but without the external markers of disability that would mark me as instantly inspirational.

The corollary to the inspirational disabled, is that there must be some equally uninspiring disabled. Those doing disability wrong. For that lady who was amazed at my ability to buy milk, will she berate or think less of another who is unable to head out to make such a purchase? Will she judge because the nuaces of that other person's disorder creates different impediments she doesn't understand. We see this already when people are berated for not trying hard enough, "Suzy over there can do it. Why can't you?", by family members, doctors and even other disabled and ill, when in truth they may already be doing all they can.

The way my disorder presents, differs greatly to that of others with the same disorder. Right now I can't leave my bed half the time and heading to the shops to purchase milk is beyond me. Am I suddenly less inspirational? I'm pretty stoked that I managed to shave my armpits and washed my hair today. Sure it's no inspirational diary purchasing, but it took far more effort and determination than buying that bottle of Paul's all those years ago.

So what are the parameters for inspiration?

Am I inspirational simply for daring to head out into the wider world to be seen?

Does that inspiration dissipate as I am no longer able to get out and about?

For those living everyday with disability that is not visible, are they less inspirational because you cannot see the pain or anxiety they live with each day?

Does the inspiration of being seen out in the world with visible disability, outweigh the fact that the same person kicks kittens or runs over the feet of old ladies for a chuckle?

The man in Nicholson's article has a reference point, his mother with MS. He sees inspiration in Nicholson being out and about because his mother, whilst he acknowledges her difficulties, doesn't get out and about. Does that make her less inspirational? To live with a progressive neurological condition is not easy. Sometimes simply finding the strength, physically and emotionally, to get up and keep going each day is a feat worthy of celebration. But these moments. The most common, understated and frequently overlooked achievements are not seen as inspirational despite their personal salience to those who experience them. The overwhelming belief in disabled inspiration only occurs in the public display. As if somehow simply being out and about means we deserve our picture on the back of a Cornflakes box.

Inspiration in and of itself is a good thing, but it shouldn't be seen at every turn, or in every disabled person simply by virtue of their presence. We are more than an item on display for the instant provision of warm fuzzy feelings. Without questioning why someone is or isn't inspirational, without learning about them as an individual as we would any other, we reduce a unique person to an object.

There are amazing, inspirational people with disabilities. I am lucky enough to know many. There are also people with disabilities who are complete arseholes. Because disability doesn't provide some magical protection against being a dick. (Hell, we don't even get a secret decoder ring. I'm still peeved about that.) There are also the vast majority of people with disabilities who fall somewhere in between, just like the rest of the population. Catch me on a good day and I'm Sally Sunshine, happy to discuss my illness and educate people about the challenges that many with disabilities face. Other days I simply cannot educate one more person, and I am likely to bite your head off should you ask. If I were to buy that milk and drop an F bomb because telling me that doing so was inspirational, when it is actually really patronising especially when said with a Play School voice and accompanied with a pat, would I suddenly lose my inspirational status? Luckily, I don't make a habit of swearing at old ladies and gritted my teeth thus keeping my shiny inspirational tiara firmly attached that day.

Just as with the able-bodied you can't simply judge by what you see. How we approach life and our individual stories cannot be determined in a single glimpse of a mobility aid or visible disability.

I am not here to inspire others by simply existing. Every time I am told I am inspirational for doing regular things, it has implications that go far beyond my own personal experience on the day, spilling over into the wider, yet ironically narrow, narrative on disability. I do not want others who may be unable to do something I can do, to be thought of as less, or not inspirational as a result. I am not overcoming, fighting, or living despite disability and illness. I live with it. It is part of me. It is my normal.

The carte blanche labeling of the disabled as inspirational is as problematic as the idea of the ever-smiling happy disabled, the alternate pity-worthy disabled, or the new politically-inspired, lazy disabled. We are not of one personality, or one mind. We do not all behave in the same manner. We are as varied as any other group of people. To be honest I hate the word Crip, yet for many with disability they happily embrace the title. I can't even get overly pfaffed about differentiating between people with disability and disabled people even though they are based in fundamentally different models, and I often just alternate between the two. And yes, we even approach the idea of inspiration from different perspectives.

As with the overuse of the words hero or brave, the ability to truly inspire is diluted and our ability to recognise it is lost when the label is given so easily and without any evidence beyond being seen. If inspiration is detected and announced simply because you can see a limp, a walking stick, a wheelchair, a visible difference of some form, then disability is the only requirement. The context and the story of that person and their experience is negated in favour of a quick and superficial criteria. Doing so also blatantly excludes those living with challenging invisible disabilities who may have equally valid claims to being inspirational but without the visual cue are overlooked.

What inspires one, will not inspire others. That is very much an issue of personal choice. Just as our reactions to being labeled inspiring will reflect our personal experiences and beliefs. But we do need to be more critical in our approach to deciding who and what is inspirational within the realms of those beliefs. It is in a person's uniqueness and deeds, the content of their character not their mere existence, that inspiration can be found. To act otherwise reduces a person to an object, and loses the amazing and beautiful diversity that can be found in the individual.

Michelle