How to be a Good Friend to your Disabled Friend

It’s Disability Action Week, which means a number of charities and disability service providers are vying for your attention and money in order to ‘support’ and ‘empower’ people with disability.

What I’ve recognised these past few years is that the focus is almost entirely on cliché notions of inclusion. You know, supporting employment initiatives or uplifting carers and guardians of disabled people. Or my personal favourite, the unintentionally ableist fundraisers that actively exclude the people they’re supposedly trying to support from participating (see: Steptember… or any marathon for disabled people, really*).

But where is the focus on the real disabled people you interact with everyday?

What about looking within your own circle of friends?

I’ve had a couple of people ask me recently how they can best support me. I appreciate the question. Earnest and genuine attempts to support me are always welcome, but I appreciate them more so when I’m given the opportunity to share what’s best for me.

With that in mind, I’ve created the following list (watch out, Buzzfeed):

How to be a Good Friend to your Disabled Friend

Disclaimer: some of these may be universal, but of course, I’m speaking for myself here and cannot claim to speak on behalf of every person ever. Please consult your friends directly. And also buy them something pretty.

  1. Punctuality is a Privilege for the abled. Understanding this is key to knowing me. At any given moment, my knees could give out and I could end up on the floor, immediately shoving a 20 min delay (at least) into my plans. I could be walking fine and suddenly find myself fatigued, with my legs moving much slower than I’d like. I can never ever guarantee my ability to be punctual, unless I drive over and camp outside the venue overnight, rolling up in the same clothes as the day before. So please be patient and understanding. If I’m late because I’m a loser who didn’t manage her time properly, I’ll own up to it 100%. If I’m late because I simply couldn’t move faster, please accept that. Try not to make me feel worse about it.

  2. I may cancel, but that doesn’t mean I don’t like you. Sometimes, the pain and the fatigue can set in and I’ll realise I’ve overcommitted, or perhaps just need to frantically restructure my week to accommodate. As I write this, I’ve postponed two social outings I was really looking forward to because oh boy, I need to rest.

  3. Know when to intervene, and if you don’t know? Ask. Being my friend means occasionally dealing with ableism in public. If it’s needing to advocate for myself to get accessible seating or use the elevator to get upstairs, there may come a time when someone isn’t listening to me, and they may turn to you. Where possible, affirm my stance. Repeat my requests as I’ve made them, and don’t offer your own alternatives without checking as sometimes they might present more obstacles for me and confuse whomever we’re dealing with. But if you don’t know if it’s appropriate to step up, please ask. It takes a while to figure out how to function in that type of situation. I’ll never be offended by you asking first.

  4. Always invite me, even if you know it’s inaccessible. When I was 18, I rejected almost every 18th celebration invitation because it came with a ‘followed by clubbing in the Valley’ comment. That wasn’t accessible nor safe for me, so I said no, and I’m pretty damn sure I lost friends in the process. I stopped receiving invites to events in general. Sometimes, I will have to say no if I can’t get into the building or cannot transport myself there. This is not something I like doing. But if you love me, please invite me. Even if I can’t make it, it’s better to know that you still think of me. And better yet, if you really love me, provide the accessibility information for me. Call the venue, find it on Google Maps and sus out parking and stairs, and let me know. Offer to meet up another time if I can’t make it. If you want to see me, I want to see you, and providing alternatives reduces a significant amount of the emotional labour involved with social related access issues.

  5. My experience is not yours to claim nor to use as inspiration. Please do not share intimate details of my life as a disabled person with people I don’t know. Please do not pry into my disabled experience so you can better appreciate what you have. That’s not friendship. I do not exist to make you feel good about yourself (unless, of course, you’re rocking a cool outfit or telling incredible jokes. In that case, I will absolutely compliment the heck outta you). If you would genuinely like to know more about how I’m feeling, ask ‘do you mind if I ask about ___?’ before jumping in. Sometimes, I’ll have the energy to respond. Other times, I won’t. Please be mindful of that. I really appreciate it when I’m given that respect.

  6. Trust me. Take my word for it when I say I’m okay and don’t need help. A well-meaning grab of my arm to help me on a hill can actually throw me off balance and send me towards the ground. Pulling my chair out for me can cause more trouble than it’s worth. I promise, I will ask for help if I need it. Please be kind, and please respect that as an adult, I know what I’m doing. I know how to manage my day-to-day. Trust me.

*I mean, seriously?! You’re gonna stage a MARATHON for people with cerebral palsy?! Actively excluding many people with cerebral palsy who aren’t able to participate?! Sure, some can and do, opting to participate in a wheelchair or using other aids. But. COME ON. If I see another muscular dystrophy marathon that I can’t actually participate in, I’m going to have things to say. Four letter things.

identity revelation.

Every two years, I have the worst year. 

I had this revelation not too long ago. My bad luck comes every second year, and it's rough. 2013 and 2015 were especially difficult, but 2017 has brought a whole series of challenges that I was totally unprepared for.

This year, I discovered the social model of disability. It seems unfathomable to me now that I was completely unaware of its existence before then, because it makes so much sense, but I had spent so much of my life thinking that the medical model was the only real definition as that's all I'd been exposed to. But discovering this model that reinforced my right to live and access the world as I should meant a new, uncomfortable terrain to navigate. How do I begin to take back my right to hold space and exist? How do I begin to demand these rights and how do I do it respectfully, but with the authority I should have as the owner of the body I inhabit?

I've been tripping up a lot this year, because I have absolutely no idea how to communicate this newfound sense of pride. I have spent almost 22 years being a pushover to the politics of an abled society, so to be told that there's nothing wrong with me, but that it's society that hasn't been built to include me... well. That just changed everything

Your early twenties is a difficult period of self-discovery for pretty much anyone. That's why shows such as Friends and How I Met Your Mother gained so much momentum. A bunch of twenty-something pals trying to work out what the hell they're doing. Relatable, right? Well then imagine one of those characters discovering that everything they had been told about their identity was a farce, and they are entitled to a lot more than what they'd been offered in the past. 

I'd watch that season. What a mess.

There's an unrealistic expectation that disabled people will automatically be agreeable when the bare minimum is offered. That we'll somehow be grateful that we have been offered a teaspoon of icecream when the kids at the 'normal' table get a full bowl of it to themselves. But no, fuck that. I want the bowl, and we should all be sitting at the same table. 

I'm a millenial, and we're constantly fighting the notion that we're all entitled trust-fund brats with no real concept of how the world works. This gets even trickier when disability is thrown into the mix, because a disabled person demanding respect is different to a disabled millenial demanding respect. I'm immediately more difficult to deal with, more entitled, more cynical, more... whatever. That's upsetting. These judgements are hurtful and they couldn't be farther from the truth. I'm overworked 98% of the time because that's what's expected of me as a millenial. I can't keep doing that, and I've been trying to find ways to cut it down. But I don't know how, and I've been getting it very wrong in the process.

When we mess up and we have to face the consequences, it can be rough. Really rough. But not all consequences have to be negative. They can be learning experiences on both sides. I'm going to try to advocate for myself as best as I can and if I mess up and hurt someone in the process, I'm going to deal with those consequences, apologise, make amends, and learn from that experience. But that has to go both ways. I'll get it wrong. I'll often be problematic. I'm not infallible. I'm also not always the problem, and I'm learning that now. It's not okay to be oppressed, and it's okay for me to speak up about it.

When you're young, you're taught to respect your elders. School taught me not to talk back. It also taught me that I was less than everyone else. I know that that's false, now. But do you know how difficult it is to unlearn all of that?

I DESERVE (1).png

I deserve to take up space. I deserve to be heard. I deserve to have authority over my body, its actions, its representation, its movements. I deserve to hold the same rights, privileges, and be afforded the same respect that abled people are afforded.

And I didn't truly believe that until this year. 

I do now. 

So bare with me, because I'm going to mess up, and I'm going to get it wrong until I start getting it right. It's been a truly awful year trying to come to terms with this new identity, one of ownership, respect, and agency... Many people have disappeared in this process and I'm sure others have struggled with it, too. I know I haven't done it well, or done it right. I'm learning a new language, find a new identity, building a new life, and trying to find my feet.

But I can't keep giving into the medical model of disability anymore. I won't keep conforming to the standards of a society designed to keep me down. We deserve better than that. We deserve to take up space. 

So thanks, 2017. You've been horrendous to me this year, for a number of reasons. But you also brought me this revelation of sorts... Your thank you card is in the mail.

not your story to tell.

With the rise of mummy bloggers and social media influencers comes a troubling trend of parents using their social media accounts to document and exploit their child's disability and its symptoms.

I call this a troubling trend because the more I find myself scrolling through Instagram's 'Explore' tab, the more photos I see accompanied by parental anecdotes posted under the guise of 'raising awareness'.

It makes me feel physically ill to see these posts, for a few reasons:

  1. The rise of profit-gain posts exploiting disabled children for the purposes of spruiking a product or brand and benefitting from it.
  2. The complete disregard for the privacy of the disabled child, who should be given the right to choose when, why, how to share their story, and how they identify* - if they want to.
  3. The subconscious ableism prevalent in the mindsets of these social media users and their followers, who often sympathise with the parent - 'I'm so sorry you have to go through this, you're such a strong mom, I don't know how you do it!' - whilst (possibly inadvertently) supporting the idea that disabled people are 'less than'. 

Now, I'm not at all suggesting that parents of children with disabilities should hide their kids from social media, because that's just gross and discriminatory. Instead, I'm urging these parents to ask themselves: is this my story to tell?

Carly Findlay wrote an excellent piece on this issue in 2015, and I'd like to share her insights with you here:

"There are parts of my condition that are so private: how my face looks first thing in the morning, the piles of skin on my floor and in the bed, and the smell of my legs when they’re severely infected. I don’t let others see this side of my condition, because I guess it’s like letting people see me go to the toilet. I want my privacy (and I am so thankful for my parents respecting this as I grew up). I hope to always put the best side of me online..."

The above quote resonated so strongly with me, because I do the same thing with my own condition. Central Core Disease and scoliosis mean that I stand somewhat awkwardly and I have an awkward gait when I walk. I'll rarely be photographed from the side when I'm standing, and I often won't allow people to look at me when I try to get up from a chair. My selfies are almost from chest-up, because I'm not too proud of how chunky my legs are without the muscle tone to help give them shape. These things probably seem silly to most people, but it's important to me that my first introduction to someone is on my terms.

This isn't limited to social media. When I sit cross-legged on my office chair at work, I'm not going to tell my co-workers that it's because my feet are numb again and my calf muscles won't stop aching. I just get on with it - and I do so in privacy. 

I'm glad that as an adult, I have that right to privacy. And though I'm glad 'mummy-blogging' wasn't really a thing when I was growing up, I'm also glad to have a mother who understands my right to privacy, too. I have not once seen a post of hers that indicated I was unworthy, or 'less-than'. I haven't seen a single degrading post outlining her heartbreak at my 'devastating diagnosis'. She was a powerful advocate when schools didn't understand my right of ownership over my own body and my ability to articulate my own access requirements. 

I was given the right to come to terms with my given circumstances and disclose however I wanted to. 

Carly also wrote,

"An adult with a disability may choose not to disclose their condition – the whole condition or certain intricacies of it. But sometimes children’s identities are made public before they’ve given consent. When a disabled child’s parent has already blogged about their disability or shared photos and stories on social media, their condition has already been disclosed. And so this impacts on their friendships, future employers, relationships and esteem."

I see the disclosure of children's disabilities all the time when I'm perusing Instagram's Explore tab. A cute photo of a young girl with her mobility aid and some glittery pink shoes is almost always accompanied by a long caption outlining the intricacies of getting that shot and how taxing it was for the mother to organise. Sometimes, the mother - let's call her Suzie - will talk about how exhausted she is and how she wishes her daughter Sally could just walk 'properly' and be 'normal'. Other times, Suzie will upload a photo of Sally sitting on the toilet and praise her for climbing up all by herself like a 'big girl'. 

It's infantilising, degrading, inspiration porn-enabling, and what's worse is that these are often sponsored posts. That's right - parents are getting paid for exploiting their disabled children.

My heart hurts for these children who are not granted the same dignity I have been afforded. I feel my stomach churn every time I see another post like Suzie's and read the comments of those sympathising with Suzie's plight and completely ignoring Sally's privacy - and how this may adversely affect her future.

Your child should always be given the respect they deserve, the privacy they're owed, and the agency to choose how they identify, how they're portrayed online, and what they feel comfortable revealing.

I could write several posts about this, but I'm already fearful that I will be attacked - as many disabled writers are - by parents who disagree with everything I've just said. So instead, I'll just leave you with this infographic (with an image description below), and a final thought:

Lived experience refers to actually living as a disabled person. If you don't have this lived experience,

it's not your story to tell.

Infographic description: 
Grey background with blue universal symbol for disability (a wheelchair) and a microphone logo to the right of the headline that reads, "Blogging About Disability, A guide for parents of disabled children who use social media and publicly post about their children's disability". The by-line attributes the infographic to

The infographic contains a numbered list.

Number one. Title reads: Identity.
Body text: Every disabled person has the right to choose how they identify. I personally prefer 'person with a disability' but use it almost interchangeably with 'disabled person' nowadays and acknowledge my right to choose how to introduce myself.

So if you're blogging about your child, think about how THEY wish to be identified. Consider how 'special needs', 'diffability', 'differently-abled', and other such terms are degrading to many (if not most) disabled people and the wider disabled community, and educate yourself with disabled-led forums, blogs, and resources. By choosing for your child and publicly enforcing your preference, you are overriding the rights and agency of the disabled person in favour of your own stance. This is extremely harmful.

Number two. Title reads: The internet is forever.
Body text: Every time you tweet, blog, or post about the intimate details of your disabled child's daily life, you are publicising their experiences and limiting their privacy in doing so. These posts will be around for a long time, so if you feel compelled to write about how distraught you were when you received your child's diagnosis because you 'knew they'd never be normal', just imagine your child hearing those words come straight from your mouth. They'd likely be devastated.

Keep your posts factual and relevant to YOUR experiences. Please avoid any posts or images that explicitly reveal your child's symptoms or experiences until they are old enough to consent. 

NOTE: They cannot consent if you pressure them into it, and no, they cannot consent if they haven't received appropriate education via disability-led resources to understand the implications of such public posting.

Number three. Title reads: When it comes to disability issues, disabled people are the experts.

You may be the parent of a child with disability, but you are NOT the expert. 

This may seem harsh, and I don't write this to diminish how important a role you play in your child's growth and upbringing. I write this to explain that you do not get to choose which terminology is or isn't offensive, and you do not have the right to dictate how your child feels about disability rights issues. As such, why is it okay for you to post and blog about these issues and override the opinions and preferences of actual disabled adults in the process? 

Answer: It's not. Always refer to disabled-authored resources.

Number four. Title reads: Your child's disability is not about you.
Body text: I understand how parenting is a difficult job, and parenting a disabled child can be even more difficult. But it's important to distinguish the difference between good ole parental venting and badmouthing disability.

It's totally understandable that you'd want to get some troubles off your chest - just consider the appropriate forum for doing so. Remember that even if your child is too young to notice what you post, your subconscious ableism will translate to their thinking if you're not careful. 

Disability should not be equated to and represented as a burden. 

Your child should never be publicly shamed for their disability or how it manifests. 

Your child will take their cues from you, so it's up to you to ensure that they are loved, respected, and have the agency to choose how their story is told. 

fighting to be better.

One of the trickiest aspects of living with a disability is the constant battle to be better than society perceives you to be.

It may be subconscious, but it's ableism all the same; society favours abled people and those with disabilities are often forced to go without the same rights and opportunities unless they fight for it. But be careful! If you advocate for yourself too strongly, you'll be labelled 'unreasonable'! If you are too kind and lenient in your approach, they'll walk all over you!

It shouldn't be this hard. Though I recognise my immense privilege as a straight, white, middle class woman, I find that it is so difficult for me to be granted the same respect as those around me who have the good fortune of having capable, abled bodies and minds. 

Even well-meaning abled people are guilty of the subconscious ableism that causes them to override my agency in favour of their own

When I sit at a table of peers and see pity in their eyes when they talk to me, I know that my opinions or ideas are not being evaluated on merit alone but on the presumption that no matter what, I am a delicate and fragile flower needing encouragement and positivity as I navigate my sad, pathetic, little life. I know this is bull. They don't. 

It's so hard to articulate exactly why this happens, because I've never lived life without my disability. I can't speak to the experience of an abled person encountering a peer with a disability. Perhaps it is difficult to understand what is okay to say, and what isn't... but is it better to alienate them by diminishing their worth and agency than to take the time to learn and improve your own communication skills?

Don't confuse empathy with sympathy

It's also interesting navigating the early twenties with a disability, because I'm expected to get my shit together (as an adult) whilst also being expected to call for help at every given turn (because I have a disability). If I do need help, and I ask for it, this confirms the abled person's theory that I am incapable. If I go it alone, never asking for nor accepting help, I am 'stubborn' or 'unappreciative'.

In the day-to-day, it's easy to feel like you're either left alone or watched like a hawk. It's easy to feel like there is no trust or respect. It's easy to feel like people think you are less than them.

There is no middle ground here.

There is never a middle ground.

I exist in a strange place, torn between two worlds, identifying with both yet being barred from truly being welcome in either. The abled world is the one I was born into. It's where my career is based, and most of my friends and family are products of that universe. The disabled community is a powerful one at that, but at times, I feel like a fraud when I try to dive in and realise that my experiences and feelings don't quite match those of disabled people who live and breathe disability pride.

So I constantly feel this urge to fight to be a part of something. I throw myself into study and work in the hope of proving myself, and proving that my value and my worth exist separately to my identity as a person living with a disability. 

That's not to say that I am ashamed of being disabled - that is not the case. But I am so much more. I do not exist to simply live with a disability and be an 'inspiration' to abled people who need something to feel good about.

I exist because I have purpose.

I live and breathe theatre. Making compelling works of theatre is everything. Performing onstage and becoming a storyteller for the evening is thrilling. Sharing my heart and soul with an audience, trusting them with my true identity and the challenge of making their experience worth while is electric. Creating a new work with like-minded peers and taking risks in the rehearsal room is the scariest and most beautiful thing I could ever do. Writing lyrics like I'm writing in my journal and doing it just because it's what my heart wants. 

Studying and researching for a Masters degree might be wearing me down but I know that it'll make for a more accessible and inclusive theatre industry, and I want everyone to share in the incredible, powerful, compelling stories we see on Brisbane's stages. 

That's my purpose. 

I find it so frustrating to have to fight so hard just to be heard and respected in the same way as my abled counterparts. The dehumanising of disabled people in all aspects of society is troubling. I long for the day when I can sit down among four or more people with the comfort of knowing that behind their eyes is respect and decency. 

Until then... I guess I have no choice. I'll keep fighting to be better. But only in the hope that my fight will make us all better, too.

self-righteous (a slam poem

I've got a story to tell you.

Twenty-one years ago, I made my debut
into the world with hopes and dreams and worth, the same as you
but less strength and less ability set me apart
I was doomed to fail and expected to settle from the start

But growing up I found a world where I could be free
And the adrenaline was just enough to start liking the real me
and if the story had a happy ending I could finish it there
but you know there's more to it, and you think, 'why should I care?'

Honestly, the truth is, you're oblivious and unkind
when the world that you keep building is leaving me behind
and the words that leave your lips sting more than my muscles do - 
they're just strong enough to make me want to take back my debut

but I'm here now, and I'm not moving, and this is a self-righteous piece
do I care? No. Not really. Because this one is for me.

Not for the tutors who told me I would never land a lead role;
not for the peers who whispered insults when they passed me in the hall;
not for the leaders whose resentment caused more pain than life is worth;
not for the industry whose opportunities leave our talents unearthed.

I wish that people saw my heart and soul and who I truly am
that they cared less about what I couldn't do and more about what I can
I wish that people knew how hard I love the things that are good
I don't want to speak out anymore. But. I know I really should.

But people stop listening when they find out I'm a cripple
and rumour goes around, 'that bitch's name is Madeleine Little,
'so obnoxious and outspoken, won't she ever shut up?'
'and the way that she walks, I'm glad I'm not that fucked up'.

You can stand there and you can judge me when I take a timeout
and you can say that I'm lazy when I refuse to go out
but when your body is on fire and your limbs are being shredded
into slivers and your weakness leaves you wanting to faint instead

you've got more on your mind than 'do I look good in these shoes'
because the ugly ones are all this able-bodied world makes for you.


I'm not trying to be melodramatic or to exaggerate at all.
if this is shocking or unsettling, just imagine, the next time I fall
you take a step and you sit down right there, next to me
and you become a friend and learn from experiencing.

'cause down here, they will judge you for not being like them
and down here, they will expect you to fail again and again
and when you start to inch closer to the shiny, sparkly top
they'll claim that you're too needy and shove you right off.


So I'll go right home, exhausted from talking way too much, 
I'll flop across the bed, tired from standing way too much,
I'll wonder why people don't see that I'm working way too much,
but I have to keep doing it in pursuit of that sacred adrenaline rush.


the above poem was originally written and published by Madeleine Little in '...and leap', a compilation of writing pieces, in 2016.

How To People

this post was originally published on the 15th of June, 2015.

I have always been the kind of person to feel too much. When I’m happy, I’m kinda overbearing. I talk too much, I can’t stop smiling and I probably call my friends too often. But when I’m sad or anxious, I sit in silence. I watch Netflix and eat too much, and go to text someone before realising that I don’t really have anything to say.

And my anxiety will tell me that whomever I want to talk to doesn’t really want to talk to me at all.

I’m currently immersing myself in blogs and scripts and appointments and Netflix. I haven’t spoken to a number of my friends properly in weeks. Maybe months. And it feels like I’m being a horrible friend, but then I remember that I have no real capacity to be a good friend at the moment. I don’t remember how.

I teeter on this invisible balance beam of Caring. If I fall too far right, I end up Caring Too Much, and I’ll send a wave of messages to my friends reaffirming my love and support for them and oh my gosh I miss you so much can we hang out in twenty minutes you’re so amazing you can do whatever you want to okay I believe in you let’s hang out soon please because I miss you.

If I fall too far left, I feel nothing. I don’t remember any of the lovely things any of my friends have ever said to me. All I know is that in that particular moment – maybe I’m watching The Office at 11pm – I’m physically alone, and my mind tells me that I’ll stay that way.

I don’t know how to people. I wish I knew how to people.

Growing up and trying to People 

High school didn’t really prepare me for much peopleing. Mostly because it was an all-girls school where your friendship group revolved around who you sat with at lunch, and your friendships themselves were maintained by the constant ritual of eating lunch and complaining about school. I still have a handful of wonderful friends from high school, don’t get me wrong. But I don’t know how to people.

University was a whole new ball game. BOYS. I had spent the past five years having very little interaction with boys and suddenly, there they were. And guess what? YOU COULD BE FRIENDS WITH THEM. What a novel concept. I had no idea what to do, though. And so, once again, I don’t know how to people.

How To People: Freakout Edition

I have this (stupid) tendency to reach out waaaaaay too much when I feel like I’m losing a friend who happens to be really important to me. I’ll post on their Facebook walls, I’ll text them too much, heck, I might even just send them boring Snapchats all day long. I don’t mean to. It’s the anxiety. I don’t want to lose this friend, and my mind likes to say things like ‘they don’t like you’ and ‘they have more important friends than you’. And then, you reach a point where their new BFF is in their Snapchat story and you watch from your bedroom eating Nutella from the jar.

It’s tough.

I don’t know how to people. But I do know that you don’t have to people with people you don’t want to people with. Does that make sense?

As scared as I am to lose really important friends, I just wish they would tell me if they don’t want to people with me anymore. That would hurt a lot less, I think. It’s happened once before. A friend said ‘I don’t know, I just don’t feel like hanging out with you as much’. I felt a wave of relief for some reason. I felt better.

It turns out, I’m horrible at extending that same courtesy to others. If I had the guts to simply say ‘I do not wish to people with you anymore’, lives would be saved, there would be no wars, and we’d probably live in a super awesome world of cakes and awesomeness.

Coming to the realisation that someone you love a whole lot doesn’t want to people with you anymore is sad. And horrible. And lonely. But maybe – just maybe – someone else wants to people with you, and now’s their chance.

Peopleing and moving forward

So, if you’re a dear friend reading this and you wish to stop peopleing with me – no stress. Just let me know. I’ll set you free, beautiful doves, and you can fly far away from me and my horrific metaphors. (Seriously. What the heck was that?)

But if you’re a dear friend whom I’ve been smothering and you wish to continue peopleing with me… YAY! I apologise for the excessive outpouring of love. It’s the anxiety. I have your back. Send me a smiling poop emoji and I’ll know that all is good in the hood. I’ll back off a little bit, give you your space, and I’ll stifle that anxiety voice with crapton of Nutella. I promise to learn how to people better.

Now I feel like writing a book for fellow people-novices. How to People. If someone handed that to me years ago, well, maybe I’d be a little confident in my peopleing today.

I don’t know how to people. But I’ll always want to people with kind people worth peopleing with. You should too.

May you always find your people to people with.

x Maddie

we need to talk... again

this post was originally published on the 16th of April, 2015.

Almost one year ago, I wrote a blog post entitled 'we need to talk'. This post was focused on disability discrimination and the harmful things people do and say to make life just that much harder for people like me. My goal was to educate people and hope that it would make things easier.

It didn't.

It shouldn't come as this much of a shock to me, but I still find myself trying to find the best in people when they do harmful things or say things that are ignorant and harmful. I find myself trying to justify behaviour from children and adults alike, trying to find a way to make it less personal.

But it's been nearly twenty years of trying. And I'm done. I'm done trying to justify the behaviour of others and I'm done trying to be reasonable. So instead of trying to educate you, I'm just going to give you a glimpse of what my day might be like.

When I see a flight of stairs and no possible disabled access, I feel throwing up. When I was at uni once, I parked the car and started walking into the building only to see an 'out of order' sign on the elevator. I walked back to the car and drove straight home. But what if I were to climb those stairs? Well, I could look forward to the super jolly cramps in my muscles, the sharp stabbing pain in my lower back, my shortness of breath and shoulder straining so hard to pull on the rail and haul my useless body up the next step.

Oh look! I've dropped my pen. And there's no one around. Well, if I'm in the privacy of my own home, I'll use my toes to pick it up, hold onto the wall and slowly pull my foot up towards me. In public? No. I'll just have to slowly and painfully bend over and hope that by some miracle, gravity doesn't push me down completely. It'll take a full 30 - 60 seconds to stand up straight again.

Last year in September, I fell at university. What had just been an imbalance caused by a pothole turned into a major injury, as my poor balance and weak muscles felt the weight of my bag and thrust my body, knee-first, into the bitumen. I cracked my tibia, went to the hospital, and was wheelchair bound for weeks. My knee only became bearable again in December.

Today, I woke up to the most horrendous muscle cramps in my legs. I tried the warm shower, tried laying down, tried stretching. Nope. So I tried painkillers and a nap. I ended up losing eight hours of assignment time because my body decided it had had enough. I also missed an assessment group meeting, and though my (fabulous) group members were super nice about it, I'm so mad that I couldn't contribute and pull my weight.

I don't blame people for not thinking twice about accessibility, walking speeds, meeting places, regular food breaks. I'm trained to think about all of these things on an almost obsessive level, because I know that to maintain my health, I have to do the best I can. Heck, I went down to three subjects and extended my degree by a year in doing so, because I just knew that four was too much while trying to work, too.

I don't blame you for not knowing. I blame you for not caring. I'm not asking for a medal, or some exuberant fanfare. I'm asking for consideration, and so I've decided to create a list of things to avoid, much like I did last year, and maybe someone will take notice this time around.

Maddie's list of how not to be an ignorant loserface:

  1. If I can't keep up with you, either slow down or go on your merry way. DON'T even THINK about telling me to hurry up. You don't think I would if I could?
  2. If you see some stairs ahead and no other possible route, offer to help, don't laugh/make a joke/run ahead. These stairs are my Everest. 
  3. If I need to stop walking for a bit to catch my breath and give my muscles a break, I'm going to do it. Please don't try to hurry me up. 
  4. If there's a lack of access, I have a right to complain about it. Why? Because I have a legal right to enter public spaces. Don't tell me to shut up, stop complaining or to just 'let it go'. How would you feel if you walked three stairs and felt sharp twinges in your back for the next five days?
  5. 'Oh my gosh Maddie you don't have to pay for parking 'cause you have a disabled sticker omg you're so lucky lol'. No. You think I like using the sticker? Do you think I like not being able to walk from a regular park without pain? 
  6. Don't make me feel like any less of a human. I have feelings, thoughts, opinions and a voice of my own. You don't have a right to speak for me, you don't have a right to speak down to me. If you do, you are an ignorant loserface and you're probably not worth speaking to.

You'll probably notice that this blog post is much more harsh than last year's. That's because last year, I was fairly easy-going and willing to give people fifth and sixth chances. I'm not anymore. Because I'm exhausted. I'm sick and tired of having to compromise my basic human rights to please others or suit their needs. My name is Maddie, and I am a person. A medical condition doesn't change that. 

I have rights. And I'm going to start enforcing them.


Big mega thanks to all those pals of mine at uni who carry my bag for me or fill up my water bottle when I can't run to the bubbler. You da best. Your love and endless support is wonderful and it means a lot to know you have my (curved and often inflamed) back. Ha. 

we need to talk.

I've accepted the dumb muscle pains, the dumb curve in my spine and the dumb speed at which I have to climb stairs. I've accepted all that. Am I happy about it? No. Am I going to keep going regardless? Yes. Because I have so much more to offer, and you would know that if you bothered to get to know me.

I don't care what you think about ME. But my disability isn't me, and if you think that for a second then you're wrong. I'm sorry, but you're wrong. 

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