"You can't call me ableist if I'm HELPING!"

Having to constantly justify your existence is exhausting.

What's worse is that people with disabilities can achieve incredible things, but credit is almost ALWAYS given to the able-bodied people who are lauded as 'brave' and 'inspirational' just for helping. 

For example, I could direct a movie and employ an able-bodied assistant director. That assistant director is much more likely to receive praise or recognition on the basis of the work, in addition to being praised for 'helping someone with a disability'. Meanwhile, I will be called 'inspirational' and comments like 'it's just so great to see you working so hard even with your condition' detract from my role and my work.

This quote from Nik Moreno is appropriate. You know you have able-bodied privilege when: 

"1. Ableist people will actually heed your call-outs about ableism [if you're able-bodied]: It all starts here. When you notice someone being ableist and call them out, they are more inclined to treat you as credible — especially if you’re a white cisgender person. There’s a major double-standard, because disabled folks have been working hard to fight ableism, experiencing varying degrees of ableist violence, erasure and even death. When we call someone out, we’re silenced, invalidated, victim blamed, etc. But the second an able-bodied person speaks up, they’re “revolutionary,” “progressive,” and “inclusive.” Frankly — it’s bullshit."

Not to mention the way in which the able/disabled divide is INHERENTLY PREVALENT IN EVERY SOCIAL SITUATION. I put that in all caps because even the most well-meaning able-bodied people constantly fail to see how they might be contributing to the societal discrimination. The constant infantilisation needs to end. Throw away your baby voices and your pitying looks, and completely dismantle your micro-managing or patronising tendencies.

Start by acknowledging that people with disabilities are human adults deserving of the same basic human rights and privileges that all other adults are afforded. Step back, and allow them as much independence as possible. Decision-making agency is a key component - imagine that you could not complete a task without having every single step dictated to you along the way. It'd be infuriating, and almost impossible when you know your body will not cooperate. Now takes that knowledge, and apply it to reality. Treat your fellow humans with decency, respect, and kindness.

When it comes to my capacity to work, live, think, and feel as a human being, I know my limits and my ability better than you do.

What I need is for you to hear me when I say that I CAN or CAN'T do something, and take my word as truth.

And for the love of all that is good, stop talking down to me.

My muscles may be insufficient and my legs may not move as fast as I want them to, but my mind and my heart are complete. I am capable. I am diligent. I can prove myself to be a professional in a working context, and I can prove myself to be a contributing member of society. But I can only do these things if I am given the space and respect to lead my own life, and am allowed to live as an adult and as a human, free from the constraints of able-bodied people who think they know better than I do.

Once upon a time, I wrote a book...

...and now I'm holding the physical copy in my hands.

It's a surreal experience.

My book, '...and leap' is a collection of writings, so to speak. There is no one style of writing and no cohesive structure, other than the separation of musings into three sections; years, people, stories.

years contains one piece of writing based on each year of my life thus far and the most pressing and/or influential memory or feeling of that particular time.

people contains letters, poetry, reflections, and more, either reminiscing on those who have a great impact on my life in one way or another, or expressing gratitude or remorse to those who have had an impact in the past.

stories contains... stories. in a wide array of forms. short stories, poetry, lyrics stolen from songs I've been working on, dialogue from plays I've since shelved... I wrote the stories the way they begged to be told, focusing more on the feeling of the action rather than the action itself.

I've spent 6 - 7 months on this project, on and off. I had put it aside until a burst of inspiration a few weeks ago led to the impulsive desire to make it happen. So I did! I dipped into my savings (because that's what mature, responsible adults do, yeah?) to print a very small batch to start with.

The incomparable Lily Sullivan is responsible for the artwork. I am endlessly grateful for her contribution and her friendship.

If you'd like a copy, please get in touch. This is a passion project, not a way to make a living. I don't even know if you'll like it, but I've put my heart and soul on paper now and it's time to let this baby fly.

Each copy is $20 AUD, or $25 if you'd like me to post it to you. 
Payment can be made with cash upon in-person delivery, or direct transfer. 
Email me at madeleine.little@hotmail.com or message me via Facebook if you'd like to place an order.

3. The Exhaustion

I'm exhausted.

Having this body is exhausting.

When it gets the point where I haven't left bed for six hours because the Nurofen's out of reach, I know it's bad.

When it gets to the point where I have two anxiety attacks a day over finances and not knowing if I'll be okay this month, I know it's bad.

When my lower back is spasming every time I move into a sitting position, I know it's bad.

And when I completely miss a shift at work because of all of the above, well, I know it's even worse than I'd thought.


I hate it.

And I f*cking hate myself so much right now because on some level, I think that if I were just slightly stronger mentally and emotionally then maybe the physical symptoms wouldn't be so bad. Maybe I wouldn't be letting people down. Maybe I wouldn't be giving 80% to everything when I should be giving 110%. Maybe I wouldn't be writing this bloody awful, depressing blog posts every time I feel totally alone in this.

Because I am. Not one person in this world understands how this condition affects me daily. Not one person in this world knows how it feels to live this life, feel this pain, do these things.

"You're just writing this for attention."

No. I'm writing this because I'm sick of holding it in.

I'm sick of feeling like this.

I don't want to hear 'omg you're so brave' and 'you're so strong!!!111!!' because I'm not. And I know those words come from a well-meaning place but... really? Neither of those things are true. If they were, I wouldn't be writing this post to begin with, would I?

I feel like an absolute joke and somewhat of a waste of a human. And that's the honest truth. At least until I can have some more nurofen and go to sleep tonight.


It's too much for me today. It's just too much.



Time to go the doctor, I think.

2. Late again.

I was late again today.

I tried so damn hard not to be. I set my alarm two hours early. planned out what I was going to wear in my head, I had my bag sorted out the night before. But it wasn't quite enough.

On a good day, I can wake up an hour before rehearsal and make it on time - sometimes, with 5-10 minutes to spare. Not on a bad day, though. Never on a bad day.

When I wake up, it takes at least 30 mins for my body to realise that it can move. The energy it takes to detangle my painfully incompetent legs from my blanket burrito is so overwhelming that I end up sitting on the side of bed contemplating the Panadol VS. Nurofen conundrum that I face on mornings like these. Sigh. Nurofen it is. 

I look in the mirror and see that my hair's lookin' kinda gross. Do I have the time to wash it? No. Do I have the energy? No. And somehow, I've entered this bizarre time warp and it seems I've spent twenty minutes just sitting, willing my legs to spring into action. They don't.

So I do some mental cheerleading. There are a million Maddies in my head yelling at me to just put one foot in front of the other. I can do it. I have to.

I have forty-five minutes until rehearsal. It takes 15-20 minutes to get there. 

So I need to get ready in 25 minutes at most. 

I can do it.

I can do it.

I have to do it.

I forego a hairwash in favour of the (incredible) dry shampoo and haphazardly throw a braid together. No time for makeup, but... that pimple. Maaaaate. I dab some concealer on it just so I can feel better about myself. There. That'll do it. 

I check the time. Shit. How the hell did that take ten whole minutes? 

I get my dress on, fix it up in the mirror, zip it up. Right. Shoes. I'm meant to wear my converse, so I pull the right one on and I'm tying the shoelaces when - yep. Cool. Hand cramp. FUN. Okay. No time for this - I'll just kick the shoe off, chuck 'em in my bag. I opt for thongs instead. 

It's winter, and it's freezing. But. Whatever. Gotta get going.

I gather my things, throw some food in my bag, and start making my way to the car when I wonder why it's taking so long. I look down. Each step is smaller than it should be. So I push on.

Urging my legs to move faster and stronger, my inner dialogue is a mess of voices. Angry, frustrated, anxious, tired voices that just want to make it to Point A and entertain the thought of Point B before the day is over. 

They can yell all they want. My legs aren't gonna move any faster. 

My mind suddenly remembers all those memes on Facebook about slow walkers and I feel the resentment hit me in the chest and shoot down my spine. This society and its limits and expectations just wasn't built for me. My mind has been shaped to fit these demands but my body just isn't of this world at all.

I make it to the car. Bag on the passenger seat. Sunglasses on. Seat belt clicked. I look at the time.

And now, I'm running late.

I didn't even get ready properly, and I'm running late. 

I text the directors to let them know. They say it's okay.

It's not.

You'd think driving would be an arduous task for these incompetent limbs of mine, but it's actually a sweet relief. I drive. I make my way to rehearsal, and I pull into the car park. Disabled sticker thrown on the dash, I take a quick look in the mirror and realise I've been crying the whole way. 

Not out of pain, but frustration.

Nurofen only does so much.

Today, I was late. Again. And I resent myself for it. 

1. The shower.

4:07pm. I have to get ready for work, so I press 'play' on my pump up playlist (currently featuring Kanye West) and try to trick my body into think it has enough energy to do this.

I look in the mirror. My hair is on its fourth day post-wash. I need to wash it. It's butt length and Rapunzel-like and let's face it, frickin' majestic. But it needs to be washed. And with that thought, my feet tingle, as if they know what comes next.

4:08pm. I'm in the bathroom. I've disrobed. The mirror tells me I have the sex appeal of a baby giraffe but that's okay, because the mirror only gets me from the shoulders up, so in a way, it's a relief. But I digress.

I reach for my hairbrush, the first step. Detangling my long locks is a process requiring both determination and aggression. But today, my hair has decided to be difficult. Today, it takes just a little too long.

It starts in my pinky finger. A slight tingle, like the feeling you get when pins and needles are on their way but not just yet. Then it goes numb. My forearm stiffens, and holding my thumb to the brush becomes an almost impossible task. 4:12pm. It's taken too long already, but I'm still going. I swap arms to see if that's any easier. Nope. Then -

- oh. There it is. My knee has had enough. "You've been standing in the one place too long, so I'm gonna make you miserable." The feeling can only truly be conveyed through ridiculous imagery:

I see teeny tiny little evil elves in my knee with super sharp fingernails, grating my muscle slowly and painfully, and screaming in delight. They want to see it ripped to pieces. That's what they're doing.

The nearest seat is the toilet. It's 4:13pm. I sit. My knee feels instant relief but I know that time is ticking away and damn it, I need to get ready for work. So I try to resume brushing my hair. As I gradually bring my arm up once more, my upper arm feels like boiling water has seeped through my pores and started melting my flesh down to bone. I bring my arm down. That pain is momentary, but horrific. I hate it. I start to fantasise about shaving my head. That'd make life so much easier, wouldn't it?

It's 4:18. I've spent the last five minutes trying to brush this one knot out of my hair, and now I'm ready for a shower. With my left foot pushed against the tile wall, my left hand on my knee and my right hand on the edge of the basin, I push. I try to stand. I can't. So I sit. Breathe. Breathe. Round two. I push. Nothing. Down I go. The shame is worse than the pain at this point; what kind of person can't do this? I can't ask for help. I'm naked, I'm sitting on the toilet, and it's not pretty. So I breathe. Hoping that I can do it. Hoping that I can still do it.

Hoping that today isn't the day I can't do it anymore.

It's 4:26. Yeah. It's taken that long. You wouldn't believe that. If you're a friend of mine, you might suddenly understand why I'm late to some gatherings. No amount of prep time is long enough to guarantee an on-time arrival. But again, I digress.

Stepping into the shower, I reach out for the cool tap and get that hot water going. As the shower floor is covered in water, my toes curl slightly and everything becomes a challenge. I'm slipping. I can't. Stop. Slipping. Shifting my weight from one foot to another, I stand directly under the stream to get my hair wet enough to shampoo.

I'm already over it. I'm done. It's taking all of my energy to just refrain from slipping, and standing in the one spot for too long will slowly take its toll. I know what's coming. I ignore it.

My hair has been shampooed and conditioned, but the steam is getting to me. I overheat easily, that's just a perk. A benefit to being me. And this is what I've been trying to ignore. This time, it comes over me quicker than I can think. I just about manage to stumble out of the shower, holding onto the towel rack and the shower screen. I plonk on the toilet and lean back, resting my head against the wall. Short breaths. Sharp breaths.

I see dark spots. I see light spots. I see glitter. I feel the blood rushing through my body and my heart thumping slowly, but I can't feel anything else. Is the room spinning? A little. Am I going to throw up? Possibly. Who knows. It's anyone's guess at this point.

It's 4:42. The shower's still running. I can't get up to turn it off. I'm coming around a little, so I reach for the basin, run my hand under the freezing cold water and splash it on my forehead. That's better. I can do this. Splash. Splash. We're getting there.

Somehow - I don't know how - I manage to get up. I mean, sure, everything goes black for a second. But I'm up. Some quick thinking leads me to believe I have approximately three minutes of standing time remaining. Perfect. Back in the shower I go.

A quick body wash with the speed of a thousand gazelles, shower off, grab towels, grab brush, walk to my room.

One towel is wrapped around my hair, the other goes on the bed, and I lie down. I breathe. Today, I cry. Because today was hard. A lot harder than it needed to be. And I know that this right here is the reason I don't wash my hair as frequently as I should. This is the reason I cancel plans last minute. This is the reason I rejoice when my friends want to visit me at home.

It's not always this hard. But some days, it is.

It's 4:59. I need to leave the house in ten minutes to make it to work on time. Messy bun. Undies. Bra. F*ck. I can't... Can I get my bra clasp done? My mum's not home to help, damn it. It's just me. Can I - ah. There. Got it. Finally. Okay. Pants. Work shirt. Shoes. Keys. Bag. Glasses.

5:08pm. I need to leave... but opt to take two nurofen, sit a few minutes, and hope that my body has mercy on me tonight.

When I go to work tonight and people ask me how I am, I'll say 'I'm well, thank you!' Because when society tells you that your life could be much worse and people pointedly question why you don't put more effort into your appearance, you know it's not worth fighting.

It takes too much energy.

And today, I have none left.

"So... can you have sex?"

Time to get awkward, folks, but I assure you this is a conversation that NEEDS to happen.

Chances are, if you're able-bodied, you've never really thought about people with disabilities in relation to sexuality. If you have, you've probably associated with the general idea that people with disabilities have low-to-no sex drive or are overly sexual (entering into inappropriate sexual behaviour territory).

Both of these ideas are highly demeaning.

Think about your own life, and your sexual experience. Whether you're currently sexually active or not, you are aware that you have a right to ownership over your own sex lives. You can choose when to have sex, who with and under what circumstances. You have the right to say no, but you also have the right to say yes.

It is overwhelming how many times people have asked me if I can have sex. While my own experiences are off-limits and there's no way in hell I'm going to discuss that with strangers (much less post about it on my blog), the question alone is insulting at best. Why can't I? What's stopping me?

"Honestly guys, I'm simply paralyzed, I didn't have my vagina sewn shut!" - an article you need to read RIGHT THIS SECOND. Don't finish my post until you're done. I'll wait.  

The only thing that could ever possibly prevent me from a healthy, safe sexual experience is the ignorance and discrimination on the part of able-bodied people who, in one way or another, prevent it from happening.

If you haven't already, I highly recommend watching this episode of Insight on SBS on Demand which focuses solely on sex and disability. Covering issues such as sexual education, consent, access to sex workers and the impact of personal carers assisting with intimate relations, this episode is highly informative and is the perfect conversation starter. 

Conveniently, it is the starter for this conversation, right here in this blog post.

education

Sex education is lacking greatly for people with disabilities. The general assumption is that people with disabilities are incapable of healthy sexual relationships anyway, so there's no point in 'subjecting' them to the information able-bodied people receive. Even so, the sex education that people with disabilities may receive may be unsuitable for them and their needs and/or communication requirements.

Real talk: education is necessary and is vital to successful, intimate relationships and/or sexual experiences for people with disabilities.

Consent is a major issue that some people with disabilities may struggle with. That doesn't mean they are completely incapable of understanding it - it just means that an investment into their education is required. This topic is covered in the Insight episode linked above, which I recommend, as trained psychologists and experts dismantle the public perceptions regarding sex education and the most appropriate means of receiving said education. 

but... how do you do it?

First of all, it's a little creepy to ask ANYONE how they maintain their sexually active lifestyle. Bit gross. Don't ask strangers how they do it. Just don't.

Secondly, in a very general sense, there are a wide range of methods and situations that work for a number of people. I highly recommend reading this VICE article (VICE are usually shit, but not this time) to understand how people with disabilities deal with sex. 

One of the methods mentioned is the use of aids, such as the IntimateRider, which assist people with disabilities with positioning and movement to allow for a more enjoyable experience.  

Given the public perceptions surrounding sex + disability, a number of people with disabilities may find themselves with an appetite for sex that cannot be satisfied through 'regular' means (I use that term incredibly loosely). Thus, they may require the services of a sex worker. This is quite normal within the disabled community, as is simply just another means of satisfying the same basic human urges able-bodied people have and are capable of. 

Before you start commenting on the validity of the use of sex workers' services, think about this - what would you do and how would you feel if you were held back from basic human rights due to the perceptions of others? 

There are so many talking points in regards to sex and disability, and I hope to go in-depth with some of them in future posts. But I hope this post was a useful starting point, and I hope to continue the conversation with my next post, and beyond.

part 2 coming soon...