Embracing Disability

It’s a long one. You’ve been warned.

The area of ‘disability’, what it means, what constitutes ‘disability’ & how I view my children in relation to the word ‘disability’ has been playing on my mind lately.

I’ve not had the mental capacity (perhaps in need of capacity building supports!?) to fully process this & to consider if & how ‘disability’ is relevant or even accurate to use when advocating & raising my high-masking Autistic children. I have no idea where this post is going to go, but I need to go through the motions & emotions that have been circling my head & heart these past few weeks & the relation to ‘disability’. I think they’re linked, but I’m not sure until I put it all down.

So here goes…..When our children were diagnosed as Autistic (about 18 months apart) we sat them down & disclosed their neurology to them in a way they could understand what this meant for them. We were in no way experts on the matter, fully aware of not being Autistic ourselves – although Neurodiverse ADHDers – & sought the aid of incredible resources (https://literallyausome.com.au/explaining-neurological…/) to assist us with this.

We also found some wonderful & relatable YouTubers to help explain to our children how they were ‘wired differently’ in both a positive & hopeful narrative.

My diagnosis, or ‘label’ speech – as some would call it – was carefully prepared, using the words, ‘that these acronyms are explanations for how they think & things they do’, ‘that things might be harder or more challenging for them’ & that ‘we would do everything we can to support them’. We were clear that their acronyms were explanations for challenging behaviour – (including verbal abuse & screaming) violence (hitting, kicking & headbutting) & the destruction of property & all the other things that come with meltdowns, releasing their valves, sensory overload & emotional dysregulation – however, we reinforced that their acronyms were never able to be used as excuses for these behaviours. [By this I mean, admit/share that you misinterpreted something or misunderstood something & reacted in a particular way (not ideal but we’re working on it), & not using, ‘I’m Autistic so I get angry easily & lose my shit. One being explaining while the latter, enabling.]

You see, It’s still my job to raise children to be functioning & contributing adults, in addition to supporting challenges that accompany their acronyms. We want our children to understand themselves, to really know themselves & to know their challenges & difficulties as it’s the best way for them to engage, accept & seek appropriate support or decide to give some things a wide berth, to opt-out or make the cost vs benefit choice principle to weigh up whether the task/event would be worth the necessary decompression & recovery time (anything from hours to days) required.

I need to add here, that until my children are able to assess, analyse & access, I’m the whiteboard & spokesperson until they’re ready & able to take on these responsibilities themselves. What I mean is, I present the idea, invitation &/or plans to my kids & if they’re unsure about anything I seek more information, which allows us to break down & work through the scenarios that are unsettling further & see if we can troubleshoot them using the tools we’ve been working on for years. That’s the whiteboard part. The spokesperson is the part where I’m the bearer of good news, bad news, indifferent news or ‘that mum’ that asks a myriad of questions over something that I once viewed, & my peers still view, as simple. Thankfully I have friends in my life that get it & oblige without judgement. Family on the other hand are a whole different category.

I used & still use a ‘strengths-based’ model when talking to my children about their acronyms. I’m all about highlighting their strengths (not every day obviously, I’m fucking tired) & being positive about their future being able to do whatever it is that they want to do. I’ve actually said the words, ‘No, you’re not disabled’ when they’ve questioned our relationship with the NDIS or overheard me use the term ‘student with a disability’ when talking to their schools or advising parents of their child’s legal rights in relation to the Discrimination Act. (https://literallyausome.com.au/…/education-setting…/)[Acutally, I would say, ‘No you’re not disabled. But if the NDIS or the Department of Education ever show up at our front door, you’re disabled’]

Disability in my mind, (& I’m ashamed to admit it the more I open myself up to learning more), means ‘limitations’. Either physical or intellectual limitations. That is how I grew up thinking disability was. But I thought this because this was how I was taught to view it by institutions, public opinion & the general undercurrent of ‘unfortunate’ that always accompanied anything related to disability.Using my frame of reference of I thought disability was, which rightly or wrongly (I’ll be the judge of this, if that’s ok, I’m processing) didn’t fit my situation, because my kids are both physically & intellectually able. [Pandora’s box even came knocking & had me questioning if my issue, or reluctance to use the term disabled was because I was indeed taking it too literally.]

The Paralympics didn’t help either, because I Googled to see what category Autism was & it wasn’t listed. Autistic athletes had to compete in the Olympics Games as they weren’t eligible for the Paralympics. Well, if the IOC doesn’t consider Autism to be a disability, why should I? Thank you for helping, Juan Antonio Samaranch.

Unintentionally (yet respectfully as I really am a good person), I had positioned disability as something negative, something unfortunate & something to be grateful to not be. And in addition to what I thought about disability, I was cheerleading & all pom-poms with my message of ‘you can do whatever you want, you can achieve anything’! (And kick!)

You see, I wanted them to be proud of their neurology & not see it as a ‘disability’ or anything negative, or something that holds them back. But the more I think about this, it’s ME with these negative preconceived ideas & notions. Now, I started this post off by saying I was processing all of this & I am. And I am. Still. And exhale…

The reason for unpacking all of this is because the landscape of disability has changed. It’s shifted. And by a lot. And not by people. By disabled people. The mere definition of disability has shifted considerably & not just by words, but by my feelings too.

Even as I began to read all the things, & listened, & understood this climate, I positioned myself in the back row & not fully invest, because this didn’t *really* relate to my family. Because this wasn’t our story. Cheerleading & pom-poms were still chanting the positives & strengths of my children’s neurodiversity.

Catchphrases like, ‘different not less’, ‘a different ability’ & many more dulled the ‘unfortunate’ classification I’d positioned disability as. These mottos had me become more accepting* & understanding of what it means to be disabled. (*Accepting over the term, not the people. I’ve always been accepting of the people). I listened to Stella Young speak & read her words & valued what she said when talking about disability & what it means to her. She said, ‘my disability is not because I use a wheelchair, but the broader environment isn’t accessible’. She added, ‘It is nothing short of baffling to me how a city like Melbourne, where I struggle to find accessible facilities on a very regular basis, could be considered the most livable city in the world. I suppose it all depends on what makes a city ‘livable’ for you’.

I was beginning to open up to the idea of disability & its definition by listening to disabled voices. I was better able to contextualise disability & what it really meant. I was becoming more comfortable with the notion that my children were not actually ‘disabled’, but could be disabled by their environment or lack of support.

A clever play on words that, isn’t it?

There’s still a little buffer. But, I’d started dipping my toe into this arena.

This sentiment allowed me to remove the shame of what I thought the word disabled meant & allowed me to use it & to use it about my kids. But only contextually. You see I love the words in the main images of this post. ‘Autism is a ‘dynamic disability’. What this means is capacity & functioning are not concrete & may fluctuate dependent on factors such as environment, cognition, executive function, processing capacity, interoception/exteroception, neuro-fatigue, anxiety, communication differences, burnout & sensory overwhelm.

This means Autistics may be capable of a task one day, but unable to perform the task at another’. But, the word ‘disability’ in it always makes me skip a beat.I read more of Stella. ‘We fill our lives with all sorts of things that make it easier for us to get along in the world: wheelchairs, crutches, grabber sticks, hearing aids, canes, guide dogs, modified vehicles, ramps, as well as other kinds of services and supports. Disability does not necessarily mean dependence on other people’. Well, I can remove ‘needy’ from my preconceived ideas. I was really feeling all the feels & trying to unpack my misconceptions & lies about & around disability.

And then in crept the idea of the visibility of disability. Again my oracle Stella said, ‘In many ways, I’m incredibly lucky to have been born with my impairment and that it’s visible. It means my path has been predictable’. One thing that I haven’t yet unpacked or considered yet is the impact or the fact that my children’s differences were invisible. Is the absence of optics pulling me towards this identification? (Again, dunno, I think that’s another post).

As time has gone on, it’s become very clear that my preconceived thoughts & ideas around disability & how I’d been framing & viewing it needed adjusting, because it felt wrong. And may I add, it’s also really insulting, invalidating, dismissive & minimising, towards (in my case) the Autistic people I’d been listening to & following who considered themselves to be disabled. Despite my mental battles of ‘not you’re not, it’s the environment, not you’ & grabbing my two pom-poms now named ‘strength’ & ‘positives’ while I rationalise, unpack & adjust my comfort levels, I need to & will respect people’s understanding of what disability is & means & accept how everyone views themselves.

Thank you for sticking around.

Allow me to now introduce my current mental & emotional state & how this has had me reassess my position around Autism & disability even further. The older my children get, the more I see their challenges, sorry NDIS, I meant ‘deficits’ impact their daily lives. And it’s a hard pill to swallow. In truth though, I can’t swallow much because my gut is filled with suppressed sadness & grief that needs to be kept down as I need to just get my kids back to school for term 2 before I can crumble.

The days of being out as a family & appearing like all other Neurotypical families with a peppering of challenges & obvious differences are over. The differences have grown & simply unable able to be ‘blended in’ with others.

After two years of school holidays being either in lockdown or with tight Covid restrictions, I’ve not been able to venture out into the world with my children to do activities worthy of school holiday status. And here we are at the end of the first school holidays with nearly everything open & back to what it was pre-Covid.Coming out of the Covid cluster-fuck, my son who has always been affected by noise but had been able to tolerate it for short periods, is no longer able to go to the movies or go bowling without his noise reduction headphones. Is this the result of not being out in the world for two years, or a result of his sensory sensitivities moving up a notch? The short answer is, I’ll never know. And it really doesn’t matter. It is what it is.

My daughter who finds being at home a source of comfort & respite from the outside world is no longer interested in going anywhere. She’s ‘happy’ (maybe ‘content’ is better as I’ve been unable to unlock her feelings on this) & is safe, & is protected from being an easy target, & has the time & space to decompress after a full term of school & all of its demands, before heading into the next term. I used to be able to sit back & watch my daughter’s behaviour, conduct, reactions etc in comparison to the other children her age in the vicinity, but no longer can as she is absent & I’m unable to undertake any further assessments. So my daughter stays at home.

My son likes to go out. These holidays I’ve taken him to the movies, to the park several times & to Bounce (Trampoline park). Seeing teenagers riding their bikes or walking to the park, meeting their friends & hanging out has stung. Because I have a teenager too. That just leads me back to this post, (https://literallyausome.com.au/she-got-on-the-bus/) so I’ll move on.

Now, I’ve never hung out at the park shooting hoops so assumed if you were using the basketball court then others had to wait their turn. I was wrong. There can be multiple games being played on the same court using one ring. I didn’t know this. Neither did my ‘I’m not good at sharing & taking turns’ son, because at school you played with your friends & if someone wanted to play, they joined. They didn’t start their own game. But here we were at the park with our basketball sitting & hoping the other kids would leave & my son & his friend would have the court to themselves. Sitting on the sidelines though, showed others that we weren’t committed to playing & so other groups came to play. I knew this wasn’t going to end well. I could see the meltdown brewing. I wanted to tell all the other kids to fuck off for 20mins so my son & his mate could play alone, but I couldn’t. And I didn’t. This was hard. This was hard on so many levels.

What was I to do? Tell the kids that my son was not good at sharing & taking turns? He had already gotten some unsolicited advice from another kid standing close & hearing us that ‘maybe you should learn to get better at sharing & taking turns’. Fabulous idea & advice & exceptional timing as my son was slowly dysregulating.

I managed to do something else with the boys at the park & seeing my son more regulated I was able to chat to him about the rules of the ‘public park’ that were different to school & asked him to think about whether he was able to play with his friend & share the court or not be able to play at all. The outcome is irrelevant, although he chose to play with others on the court, this had me thinking about disability & how something like going to the park was more difficult to navigate for my son. Gone are the days of going on the equipment & playing ‘Ninja Warrior’ of not touching the ground going from one apparatus to the next, we’re in a new territory of shared real estate & social negotiation while playing sport. I thought about the notion of whether this constituted my son being ‘disabled’, or disabled by his environment. I left these thoughts & ‘parked’ them for later. Then we went to Bounce. There were a lot of kids there. We’re not used to ‘a lot of anyone anywhere’, so this was strange. I noticed all the teenagers & shoved those thoughts & feelings back where they came from. Because not now feels. I need to get in & out of this jumpy hell unscathed.

We made our way to the bouncy trampolines (yes, there are bouncier ones) & it was a free for all. Kids all over the place all vying for taking turns. And my son froze. He just couldn’t work out when it was his turn. He just couldn’t read the play. And he was getting more & more distressed as the seconds went on. The person working there kindly explained to my son that it was like a skatepark. Everyone ‘shares’ & ‘takes turns’. I couldn’t believe I’d not considered this to be an issue for him! But, it never used to be. He seemed to not find these activities difficult & here we were.I found myself getting really sad over this new development. I was sad & couldn’t think why as the lights were bright & the music was too loud for me to think anything other than, ‘can you turn this shit down a little’.

You just expect things like this to just get easier as your children get older, not harder. Gone are the days when we can blend in with the others. I suddenly felt very different. We were not like everyone else there. (Yes, I’m sure there were other Neurodiverse people there, but we don’t have a secret handshake or wear a particular colour to easily identify each other in public). I felt as though outings like these were coming to an end, or we’d have to at the first session of the day in the hopes that they were less busy. (I doubt there would be any time on the holidays ‘quieter’).

Again, is he considered ‘disabled’ or is it the environment?

My son needed time to process & adjust to this change & newness. He only had an hour of jumping time booked so this had to be done swiftly.The staff member was super cool & checked in on us & he asked how he could help. I mentioned it was difficult to ‘read the room’ & he showed us how to ask for a turn. He demonstrated it. It was so amazing & helpful. The issue was, well, the issue of taking turns & sharing, which I had not shared with him because how can I explain that my 11-year-old able-bodied, able to talk & seems not to have any intellectual challenges, simply doesn’t like the share & take turns? Nevertheless, the guy was a fucking legend & also organised a couple of free passes to go back another time & get the full hour of jump time.I digress.

So then, what if I dropped the term ‘disabled’ to the staff member? What would it even mean to a group of teenagers working there when my kid can see, hear, talk & walk anyway? I mean why would you bring a disabled person to a trampoline park? Not computing.

Would it have been beneficial to use the word ‘disabled’ to allow him to stay on the one trampoline the entire session? (They can make you rotate if the session is full, because, ‘turns’). Was using ‘disabled’ my way of getting sympathy & allowing us to bend the rules? Was it my way of avoiding a meltdown right then & there & for hours & or days afterwards?Am I now subscribing to disability for personal gain? I’m feeling better about being in that space, so surely I could exploit it. (I would never park in a disabled spot – just saying – I have my morals & not a terrible person).

If I was to play the disability card, was this just enabling him, & therefore not giving him the opportunity to learn to accept that sharing & taking turns are part of life & it’s something he has to just get used to. The world will keep spinning whether you’re on it or not!But sitting there watching the other kids, not teenagers cos it hurts, I thought that our session might be the last session we do like this. I’d have to ask about ‘sensory sessions*’ & make plans around specific times that these were held…. which tends to be opening an hour early & having a 9am session. We don’t have the luxury of choosing the time of day.

*I followed up. They’re not running sensory sessions at the moment, but the quiet times are 4-5pm on school days. Not the optimum time for our decompressing children. Oh &, some families need to fit in some therapy too (because the schools have ‘suggested’ therapy be done not during school time. Good luck getting any appointments before or after school as they’re swooped up quicker than a toupee on a windy day.)

Anyway, the point is, the ‘freedom’ & ‘choice’ of being able to go whenever we wanted, if we wanted a sensory-friendly session, was limited to quiet times because they’re not running sensory-friendly sessions anymore. This feels very much like we’re relying on sessions to suit our needs. Surely that’s the environment disabling us (I say us cos I’m the carer & the planner of all things).

Allow me to introduce to you my over-thinking….. I hope it’s relevant.

So then the Emmys, the Oscars & CODA. A film that has everything in it including disability. And it was beautiful as it was hard to watch because I’m a person that feels things. YouTube helped these feelings longer as I searched up the CODA actor acceptance speeches from the awards won. Here is disability front & centre on the biggest stage. And pride & magnificence was felt. I FELT it. I was proud.

And Australian of the Year Dylan Allcot, who I’ve been a fan of for years not just as a watcher of tennis, but the way he speaks about being disabled, what this has meant for him, his positivity & how much it means to him to just be ‘seen’. Maybe my issue had not been about how I felt about how disability was being portrayed by language, with words like ‘deficits’ & ‘impairments’ & ‘limitations’. Perhaps guilt was sweeping over me, simply because I wasn’t able, didn’t want to or was indifferent (so much worse) to the rights of the disabled community for their need & right, to be seen.

Dear world, we’re getting somewhere!!!! Progress………..

CODA definitely helped me unpack some of my views in accepting the terminology because I had proof of how one can be disabled by their environment as well as being disabled without the buffer of the environment excuse/explanation. And Dylan Allcott’s positivity & refusal to be pitied or be positioned as ‘unfortunate’ or someone with limitations, is all leading to my mindset shifting & being open to not just the Government & the Education Dept considering my children disabled. Am I there yet?

Dunno. And even if my mindset has changed around this term, am I ready or ok to have it applied to my kids?

And then, in comes our Prime Muppet during an election debate & mentioned how ‘blessed’ he was not having…. ‘kids … with… ‘ & introducing more thoughts & feelings about this. I was angry that he viewed disability as deficits, as limitations, as ‘less than’ & under a veil of pity & shame. It fucking stung. It was really confronting as hell because I felt the same not long ago. The way the Prime Muppet spoke & the words he used, yes, yes, if they were twisted’, made me feel a sense of rage not felt in a very long time. The leader of my Country, a person able to make changes & challenge the old thinking, with one word & then stammering on further, managed to undo so much progress.

What was it about this that was so offensive & hurtful? Was it because the mother that asked him a question was asking on behalf of her four-year-old Autistic son? If the son had another physical or intellectual disability, would it have stung so much? I don’t know. Maybe not. Maybe that’s another post. But what I did know was that I heard the words Autism & disability & NDIS in the one sentence & the word ‘blessed’ not to have to….. crickets chirping…. just as I’d become the closest to comfortable to use the terminology more than ever before, in a few seconds, the leader of my country fucked it & made me & countless others forget the thing called ‘progress’ & positioned disability back to the old days of pity, unfortunate, less than, deficits & any other word, well frankly, that the NDIS uses to describe our children.

I’ll move on from that incident as all it did was rile me up more than I thought possible.

Anyway – back to the issue at hand.

Unpacking, unpacking…..Maybe there are literally two issues at hand.

Identification & Classification

The identification is whether I consider my children to be disabled & would I feel comfortable using this term in the future? The classification part is kind of harder because I’m questioning the right to be disabled. Growing up clearly classified according to my own minorities & feeling protective over the category assigned to me, I’m not sure how the disabled community would feel allowing us in & taking up space.

It’s one thing to make the decision to open the door, it’s another thing to be welcome by those in the room. The ones that literally built the room & the ones re-modelling it with fresher ideas & definitions.

Where would I find myself then? Just the elevator ride in Severance! (https://www.facebook.com/hashtag/severance). I’m not the person entering the elevator or exiting it, just perpetually in the Elevator stuck between two worlds. (Bloody amazing show – definitely check it out. Not getting paid to give it a plug).

I’m not going to force my kids to stay out of the room if their mental health & well being will be impacted & I’m not going to shove them in because a. they have a say & b. I’m not going to fight with those that have are already there to make space for the kids that can walk & talk. If we’re not eligible for a disabled parking place, I’m not sure I could take up a kind of spot from someone more in need or in fact, someone with the sticker on their car. I don’t have an answer…. I’m literally throwing out thoughts & feelings.

I’m going to stick to identification for now as classification needs way more time. (I don’t know when or how & throw in procrastination for shits & giggles).

It’s clear that the older my kids get, the harder things are getting. They’re simply ‘unable’ to do things children their age can & are doing. Pom-poms or not here peeps, the reality is reality & pom-poms are a good distraction & keep the hopes alive. Although the Olympics tell me I don’t need hope anyway!

It’s becoming more & more clear that I’m ‘unable’ to compare my kids with their peers & we’re ‘unable’ to do certain activities or outings like we used to do.

Am I still not ok with using the term ‘disabled’ in connection to my kids? I’ve used the word ‘unable’ a few times, so is this still shame & old thoughts & feelings creeping in? I think so because the mere definition of disability & inability is literally the same. One just comes without images of physical & intellectual challenges being formed.

In my processing & considering, am I using the word ‘unable’ in lieu of ‘disabled’ because of my own misconceptions & perceptions? Maybe. Maybe it’s baby steps. Maybe it doesn’t matter what the hell I think. It doesn’t matter what my relationship with the word disabled is. It doesn’t matter how evolved I get & how understanding I am.

If the landscape says that they’re ‘eligible’ to consider themselves disabled, then it’s up to them as to whether they want to embrace this terminology or not.

Does it matter whether or not I’m comfortable with the terminology? I mean my kids are sometimes uncomfortable at home simply because they struggle to understand the world around them, so who cares about my comfort levels really?!

After all is said & done, it’s up to my children how they want to identify as & it’s my job to shut the fuck up & accept & support them.

It’s their decision. It’s their choice. It’s their truth. It’s literally their life.