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Accessing support meant confronting my own internalised ableism

Any disabled person will tell you about the myriad of barriers that there are to accessing disability support, especially when you aren’t obviously, visibly disabled. But what happens when the biggest barrier you face is your own, internalised ableism?

I was diagnosed with myalgic encephalopathy (ME), systemic lupus erythematosus (SLE), and fibromyalgia at 17 years old, and have identified as disabled for over 10 years now. Recently, Autism and ADHD joined my list of comorbid conditions, and I realised that I’ve been disabled for my whole life. Throughout most of 2022, with my SLE and fibromyalgia flaring, and facing a severe case of Autistic burnout, I was spending between $400 and $1000 AUD per month on my health, in a country with a “public health system”. 

Considering that my worsening physical and mental condition meant that I was only able to work part-time, this expense was financially crippling. I decided, with a gentle nudge from my psychologist, to apply for funding through Australia’s National Disability Insurance Scheme (NDIS) to cover the therapies I needed to support my function as a disabled, neurodivergent woman in an ableist, neurotypical world. 

For those of you unfamiliar with the NDIS, it is a scheme rolled out by the Australian Government in 2013 to assist disabled people to access funding for supports that are not covered by our public health system, such as assisted living technology, occupational therapy, support workers, and capacity building psychology for Autistic people. 

Accessing the NDIS is usually a notoriously lengthy and difficult process, and there’s strict inclusion criteria and rules around what you can spend your funding on. 

Despite having identified as disabled for over 10 years, when my psychologist and I first started talking about accessing NDIS funding to pay for my therapies, I was surprised to realise that I didn’t feel “disabled enough” to access the support I needed.

The application form that she sent me sat unopened in my email inbox for weeks while I grappled internally with this voice that told me “you’re not disabled enough to access this funding” and “you don’t deserve this support”. Somehow, I couldn’t comprehend my own disability. I couldn’t fathom how a 29-year-old woman who has two university degrees and a professional job could be eligible for support funding. 

Even though I know that I struggle with things that nondisabled people do not. Even though I can’t remember ever having a pain-free day in my life, and even though I know that most people don’t have to spend up to $1000 a month to be able to work 3 days a week, and then lie in bed exhausted and unable to function for the next 4. 

I’ve spent the last 12 years of my life advocating for invisible illnesses to be recognised as disabilities by the media, the government and the general public, and yet I sat paralysed, unable to recognise it in myself, in order to complete my application. 

The pervasive societal ableism that I’ve fought so hard against for my entire adult life reared it’s ugly head in my subconscious, and it took weeks, lots of therapy, and financial desperation for me to fight it enough to complete my application, and submit it. 

Then came my planning meeting. An hour and a half sitting in a room with an NDIS employee, talking about my goals and support needs. Leading into this appointment, I had so much anxiety. What if she doesn’t think I’m disabled enough? What if she doesn’t believe me when I say I struggle to do my washing and clean my toilet, but I want to go back to university to study medicine? How do I make her realise how much I struggle, when my whole life, I’ve been trained to trick people into thinking I’m capable, and coping?

I’ve used my intelligence as a mask for most of my life, and the vulnerability required to drop the mask in this setting, and admit that I’m not okay and I need help to function was so difficult to muster. 

I had to seek coaching from my psychologist, and friends who have accessed NDIS support prior to my appointment. They told me to “talk about my worst days”, and coached me on the language to use to convey my struggles accurately. They reminded me not to minimise my struggles, the way I’m so used to doing. 

In the end, the planning meeting went well, and I was granted some funding. It’s not enough to cover all my therapies, so I’m going to need to appeal once I’ve had functional assessments done.

I can’t help but to wonder, would I have been granted more funding if I wasn’t fighting my internalised ableism throughout the whole process?

 But at least now, I’ve done the self-work I needed to in order to feel worthy of support. The support I’m able to access are going to better my life, and going forward, as I appeal for more funding, the barriers I will face will be external and system-based barriers. I no longer feel unworthy of support. 

I am “disabled enough”. It just sucks knowing that I needed the external validation of an organisation to feel that way, due to how ableism has infiltrated my brain.

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Disabled and Sexual: We Don’t Want Ableists at our Sex Parties

Disabled and Sexual is a column by Hannah Shewan Stevens which explores all the challenges, comedy, and fun that disabled people experience as sexual beings, even while we are desexualised by a predominantly non-disabled society.

The desexualisation of disabled people is a tale as old as time. In my first column for The Unwritten, I outlined the historic battle disabled people have fought against rampant desexualisation. Sadly, the presumption that none of us are interested, or capable, of sex endures largely unchallenged and is now openly supported by fellow disabled people. The latest a Twitter user claiming to speak a thought preying on everyone’s mind,

Why would anyone bring a wheelchair user to a sex party? 

To state the obvious: disabled people are sexual beings. A physical, mental, developmental, or intellectual disability does not spell the end of sexual pleasure, romance, or partnered sex. 

If you’re one of the people who readily agreed with this hellishly rambling Twitter thread, then it’s time to broaden your horizons.

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Why are we so Obsessed with “Overcoming” Stories?

Recently, I have found that my social media timelines have been overflowing with ‘overcoming’ stories. People that have ‘overcome’ their traumas, their medical issues, their financial issues, and so forth. 

We are taught to admire the people who came from nothing, the self-made billionaires and the people who put their work above everything else in their lives. While we can all applaud these success stories, and recognise the work that people put into their careers and themselves, it is important to acknowledge that having this same narrative repeated over and over again can be especially harmful to the chronically ill and disabled community. 

Using Molly Mae’s recent ’24 hours in a day’ fiasco as an example, we seem to be spoon-fed this idea that if you want something bad enough, it is achievable – you just need to put the hours in. It doesn’t take a genius, though, to realise that this is not the case for all of us. 

As a chronically ill woman myself, knowing that as a result of my condition I may be unable to have children, I have often found myself thinking “it’s okay, it’ll be different for me” –  even though the reality is quite blatantly in front of me. 

There has long been the narrative that in order to lead a happy life, or to be truly successful, you must ‘overcome’ your burdens, your ill-health, or that you must ‘rise above’ the financial situation you were born into – but what happens when you physically cannot do this? 

These promises that ‘wanting something bad enough’ is enough to make it happen is simply an idea that is setting us up for disappointment. We don’t all have the same 24 hours, the same way that we can’t always ‘overcome’ things – whether that is medically, physically, financially, emotionally, and so forth – and we need to stop pretending that we can, or that it is a rite-of-passage to do so. 

Such a narrative reeks of ableism; disability and health conditions are constantly portrayed as things that are essential to overcome, and when you cannot do this, it seems to necessitate a journey whereby you battle your own demons and have this grand epiphany, that makes you realise your purpose as a disabled person is to share your story and inspire able-bodied people as they gratefully think to themselves “I’m so glad that isn’t me”.

Having a chronic illness means accepting that you cannot always be in control of your work-to-rest balance. On the days that my body feels functional and my pain manageable, I feel a great sense of imposter syndrome, and on the days that I can do nothing but listen to my body’s demands for rest, I feel hopeless – worthless, even. 

There is no tying a pretty bow on that and calling it inspirational, it’s a case of taking each day as it comes, and accepting that I need to allow my body as much of my ‘24 hours’ as it needs. 

If illness and disability is consistently portrayed as negative, or something we should strive to overcome, how are we meant to feel whole when our illness is chronic, or our disability permanent? 

My condition has no cure, and with the pandemic wreaking havoc on surgery waiting lists, my treatment plan has come to a steady halt, too. Pretty, colour-coordinated posts on self-care and motivation can only help you so much when there is physically nothing you can do to change the reality of your health. 

This is my issue with toxic positivity and productivity – we only seem to recognise and applaud success when there is a consistently upward trajectory. With this narrative of fulfilment being so heavily prevalent online, it is no wonder that folk like me struggle so much to accept our own achievements and success, as perceptions of success, ‘overcoming’, and what this should look like is almost always intertwined with good-health and ‘getting better’.

To suggest that the parts of ‘my story’ where I struggle or have to ‘give in’ to my condition are something I should ‘overcome’, is to suggest that I am incapable of truly thriving as a result of my chronic illness, and for tending to my body’s needs. 

My condition is incurable, but it is also not ‘inspirational’ of me to work through it – my condition is simply a part of myself that I am learning to understand, respect, and work with – not ‘overcome’ and thrive from. 

It is essential that we recognise how the expectation that we should persevere and ‘overcome’ everything that life throws at us is an unrealistic and often unattainable standard to maintain. You can be successful irrespective of your health, just as you can be fulfilled and content irrespective of your financial situation. 

I am tired of waiting for the miracle where I am ‘saved’ from my condition, or to be freed from the expectation that all I do is merely an attempt to motivate able-bodied people – “because if she can do it, so can you!”

How we spend our twenty-four hours is not something that can fairly be compared, as no two people’s lives or abilities look the same. 

Comparing ourselves to others and these ‘success’ stories online will only ever set us up to feel inferior or insecure in ourselves and our own capabilities when, in reality, we all achieve things at our own pace, in our own ways, and irrespective of our health. 

The only thing that needs overcoming, here, is the narrative that success necessitates us to overcome fragments of ourselves in the first place.

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My Antidepressant is not my Demon – it’s What Eradicates Them

TW: Internalised ableism surrounding taking medication, especially antidepressants 

It’s fairly often that I stumble onto anti-medication articles. Especially on social media where journalists are eager to push the notion that women can benefit more from ballet instead of treating their mental illness with the right chemicals that their brain currently lacks to fight off depression and anxiety. 

Currently, the NICE guidance is that medication should only be given to those who are the most “severe”, and that in itself is heartbreaking as you have to reach rock bottom before anyone can help you. 

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Disabled and Sexual: Allowing Myself to be Vulnerable in Dating

Disabled and Sexual is a column by Hannah Shewan Stevens which will explore all the challenges, comedy, and fun that disabled people experience as sexual beings, even while we are desexualised by a predominantly non-disabled society.

I am in pain, like always. Except, now, I am lying in the dark beside someone that I barely know, wondering whether they are capable of handling the knowledge that every nerve in my body is screaming in agony. 

I can hear the subtle tug of breath that says they are seconds away from falling into a deep sleep. Part of me is thankful because I can mask symptoms far easier next to a sleeping partner, instead of a fellow insomniac. Another part feels the loneliness and frustration knocking at the door, informing me that they will be accompanying the pain until dawn breaks. 

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What we get Wrong About Codependency in Disabled Relationships.

There is a rightful conversation in the mainstream right now, prompted by lockdown move-ins and partnership breakdowns, on the question of codependency. Ness Cooper, Sexologist and Relationship Coach, explains “An unhealthy co-dependent relationship is where individuals become psychologically dependent on their partner to the extent that mutual benefits, shared satisfaction and consent are out of the equation”. 

Similarly, fellow relationship expert Gurpreet Singh defines two clear roles in codependent partnerships, the ‘giver and the ‘taker. Cooper goes on to say that codependent romantic relationships remove individual autonomy, and cause individual identities to be lost.

However, matters are more complicated for disabled folx with non-disabled partners. I rely on my partner for food, help with personal hygiene and to keep our home clean. So is our relationship codependent?

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Navigating the Disabled World with Multiple Health Conditions

I am someone who has newly entered many spaces. I often lurk from the beginning, aware I don’t know anything. As a multiply-marginalised and multiply-disabled person, it has taken me a while to get any grip on who I am and how I experience the world.

Finding labels like nonbinary, queer, disabled, and neurodivergent have been a powerful tool for me in a society that avoids talking about these communities. However, it has been a rocky journey walking among the different sub-categories of the disabled community, as someone who embodies more than one. 

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As a Type One Diabetic, I Struggled with Whether I Was “Disabled Enough”

My relationship with disability is complicated. Type one diabetes is an invisible illness, but most days, I don’t consider myself to be “ill.” I’m incredibly privileged in that the NHS allows me free access to insulin, the Omnipod Dash insulin pump and the Freestyle Libre flash glucose monitoring system. I live a relatively “normal” life, and as a result, I haven’t always felt comfortable using the label “disabled”: but was this the product of societal perceptions of disability?