Facing Systemic Ableism as an Autistic Woman: The Hidden Cost of Keeping Peace

There are countless situations in life that unfold beyond our control, leading us to feel powerless and vulnerable repeatedly. In such moments, it can seem as though our basic human rights are stripped away, leaving us feeling exploited and dehumanised. For the past year, I've been struggling with this overwhelming sense of helplessness and systemic ableism as an autistic woman of colour, which unfortunately continue to plague my everyday existence. This experience marks the first time in my life when I truly feel as if I've lost all control over the circumstances. The implications of this loss have been profound, affecting not only my physical wellbeing but also my emotional and mental health and sense of identity.

The root of my distress stems from the unfortunate choice to trust the wrong builders, who were supposed to help us realise our dream of improving our home but failed to ensure our safety and treated us unfairly. Instead of a sanctuary, I now find myself trapped in a nightmare—an unrecognisable space filled with anxiety. The once cherished vision of a comfortable and safe home, where I could fully unmasked as an autistic woman, has been replaced by fear, apprehension and discrimination. Each day, I live in constant dread that something else might go wrong, making even the simplest tasks feel daunting. After the accidents, I've developed a fear of walking into my own kitchen, my favourite room, once filled with warmth and nourishment, and I feel an overwhelming anxiety at the thought of stepping into my garden, which was once a source of joy for gardening and barbecuing with loved ones.

The Threat of Delays vs. Safety

This transformation of my home into a place of distress and the realisation that the builders exploited our neurodivergence and vulnerability has left me struggling with a chaotic mix of emotions that I find difficult to express. Each thought that crosses my mind serves as a painful reminder of how we were taken advantage of by those builders, leading to heightened levels of stress. The physical symptoms from my fall accidents resulted in sensory overload and other chronic conditions. In retrospect, I often feel foolish for being so reasonable and accommodating to people who were clearly exploiting our trust. This self-doubt is intensified by the nagging question: Is the pursuit of peace and reasonableness truly more important than ensuring our safety and wellbeing? Did we not ask the builders enough times to address safety issues? How else could we stop the delays they caused? Were we too intimidated by the builders' tendency to disappear without notice, fearing that our insistence on necessary repairs might provoke further accidents or delays? But what other options did we have?

Whenever we tried to address the numerous issues that emerged, the builders would disappear without any communication for weeks or even months, leaving us in a state of limbo. Our home, which is our stability and comfort, has instead become a dumping ground in the eyes of those responsible for its care. The emotional toll of this situation is immense; even as I write these words, my heart races, and I find it challenging to convey the depth of my feelings regarding this ordeal. The impact on my health, both physical and mental, has been substantial. My career and the business I cherish and need as a special interest have been put on indefinite hold as I navigate through this chaotic chapter of my life.

In a single devastating blow, my dreams have been shattered. The cost of keeping peace in this situation has proven to be extortionate; I've been silenced, stripped of my rights within my own home, suffered injury from accidents caused by the builders, and lived without basic essentials of water, electricity, and heating that have further intensified my distress. My physical, emotional, and mental wellbeing are fragile, and the persistent dangers in my home remain unresolved, with no help in sight. This turmoil arises from a misguided attempt to live reasonably and maintain peace, in the hopes that doing so would facilitate the completion of our project and allow us to reclaim our home and our basic rights. Yet, the reality is that we're left with a space that's not just unsafe but also devoid of the literal warmth and comfort that a home should provide.

Systemic Ableism Targeting Autistic Women

What makes this difficult situation even worse is the overwhelming sense that no one is genuinely listening to my pleas for help, coupled with the repeated encounters of systemic ableism in the healthcare system. I find myself in a frustrating predicament where doctors and physiotherapists seem to undermine and dismiss not only my injury but also the serious health issues I'm experiencing. This lack of acknowledgment and support has left me feeling isolated and unheard. I can't understand what I have done to deserve such treatment. Throughout my life, I've always prioritised my health and wellbeing, leading a lifestyle that I believed would minimise my impact on the healthcare system. I've never sought to burden anyone; rather, I've always aimed to be proactive about my health.

Is It Because I Am a Woman?

This brings me to a troubling line of questioning that has been occupying my mind, exploring the core of my experiences and the societal structures that perpetuate systemic ableism influencing them: Is my unfair treatment influenced by the fact that I'm a woman? This question looms heavily as I reflect on numerous medical interactions where my voice was diminished, my concerns ignored, and my needs neglected. The reality is that women, especially in healthcare settings, frequently encounter systemic biases and ableism that result in insufficient attention and care. There's a distressing history of women's health issues being trivialised, and I can't help but question if I'm falling victim to this pervasive phenomenon.

Is It Because I Am a Woman of Colour?

Additionally, is this neglect a result of my identity as a woman of colour? The intersection of race and gender introduces another layer of complexity to my situation, where racial bias in healthcare is impacting my health outcomes as a minority. Women of colour frequently face a landscape filled with stereotypes and prejudices that can further obscure our pain and experiences. The racial bias in clinical decision-making and societal narratives about race leads to assumptions that devalue the lived experiences of people like me, making it all the more difficult to advocate for my health and well-being. These thoughts haunt my mind as I realise my identity as a woman of colour is a factor in the way my health concerns are perceived—or worse, ignored.

Is It Because I Am an Autistic Woman of Colour?

Or could it be because I am an autistic woman of colour? Does my autism make it easier for healthcare professionals to ignore my concerns or collectively perpetuate systemic ableism by dismissing my pain and suffering? The stigma associated with autism often results in the misinterpretation of symptoms and emotions, resulting in systemic barriers for autistic people. I realise that my neurodivergence serves as an easy target for healthcare professionals to attribute my experiences solely to my autism, thus dismissing the validity of my feelings and the seriousness of my situation. This tendency to simplify complex human experiences into neatly packaged narratives is a form of autism discrimination and autistic social exclusion, which have dire consequences, particularly when it comes to receiving appropriate care, personalised treatments for autistic people that already lack basic support services, or the fundamental acknowledgment we all need when it comes to health.

The Injustice of Systemic Ableism

These swirling thoughts generate a deep sense of injustice and frustration that's difficult to ignore. It seems my identity significantly influences how my pain and suffering are perceived, leading to the unsettling conclusion that I'm being penalised for my identity, patience, and efforts to handle these challenges with grace. The cumulative impact of these accidents and experiences heightens my awareness of the systemic ableism towards autistic people that exist within healthcare and society as a whole. I find myself struggling with the reality that my identity is a barrier to receiving the compassion and care I deserve, further complicating my path to recovery and understanding. Each day, I'm confronted with the need to assert my worth and the legitimacy of my experiences in environments that are often unwelcoming or indifferent while experiencing autistic burnout and disparities in autism healthcare.

The Irony of Being Patience and Keeping Peace

When my general practitioner advised me to wait for assistance, I complied, believing that this was the right course of action. I trusted my doctor's judgment, convinced that patience would eventually lead to the resolution of my health issues. However, this waiting period has imposed a substantial cost that I hadn't fully anticipated. The consequences of my compliance extends far beyond just physical discomfort; it includes a deep emotional distress that has begun to seep into every aspect of my life, as well as a noticeable deterioration in my overall health.

As days became weeks and then months, I struggled with an escalating level of physical pain that has grown increasingly difficult to manage. Each passing moment of waiting has not only intensified my symptoms but also contributed to a mounting sense of unjust and despair. The physical manifestations of my condition, which I had hoped would improve with time and care, have instead served as a constant reminder of my vulnerability and the limitations imposed on me by my circumstances and systemic ableism.

The emotional toll of this waiting game has been equally devastating. I've experienced waves of anxiety and sadness that often leave me feeling overwhelmed. The anticipation of receiving the care I need has morphed into a cycle of doubt and fear, leading me to question not just the efficacy of the healthcare system but also my own worthiness of care. It's disheartening to think that my willingness to be patient and to trust in the processes of the healthcare system has resulted in a situation where I feel more marginalised and neglected than ever before.

When Healthcare Leads to Retraumatisation

This experience has sparked a deep sense of helplessness within me, one that I never anticipated facing when I first sought help. The waiting has not only exacerbated my physical suffering but has also reactivated trauma from past experiences with the accidents and the unfair treatment by the builders. I'm now questioning the very foundation of the care I thought I could rely on, and the disillusionment that comes with this realisation is deeply disturbing. I had hoped for a supportive environment where my concerns would be promptly acknowledged and addressed, but instead, I'm left feeling isolated, unheard, and discriminated against.

In light of these challenges, I'm now at a crossroads. The waiting has forced me to confront uncomfortable truths about my health issues caused by these accidents and the systems designed to support them. I grapple with the question of whether compliance with medical advice is truly in my best interest when the consequences of such compliance lead to further pain and suffering. This path has transformed into a complex mix of trust, vulnerability, and the urgent need for advocacy against systemic failures and ableism affecting autistic people. As I navigate this difficult path, I strive to reclaim my voice and assert my needs, hoping my experience highlights the importance of timely and compassionate care in the healthcare process.

Have you dealt with irresponsible builders, or has the healthcare system failed you?