Living Within the Disability Narrative: Parenting When Violence Is Not Always Recognised or Understood

By Lee Tempest, 2026. 

Introduction 

This reflection is written from lived experience as a parent within the disability community. It is not a critique of its values, which I share, but a call to broaden the conversation to include families living with more complex and high-risk realities. 

One of the greatest challenges in these situations is that the reality of violence from a child within the home is often invisible to anyone outside the family living with it.  This invisibility shapes how experiences are understood, discussed, and supported.  When it is visible, it is often minimised or reframed as part of the disability. 

Holding space for these realities does not weaken the disability narrative it strengthens it by ensuring no one is left outside of it.  Parents and caregivers in these situations love their children deeply and strive every day to do the best they can.  Their children rely on them to thrive as individuals and as a family, and when parent and caregiver needs are recognised and supported alongside the child’s, outcomes are stronger for everyone. 

Sometimes though, it is incredibly difficult to feel a sense of belonging within the disability community as a parent. 

I am mum to a beautiful neuro-disabled child who, when they lived at home, was violent towards me every single day often multiple times a day.  This has been my lived reality.  Yet the dominant narrative I encountered across services, literature, and support spaces centres almost entirely on the child.  Even in parent/caregiver support groups the focus is not on our wellbeing but our child’s.  

I often hear or read: 
• “Think how hard it is for them.” 
• “Walk a day in their shoes.” 
• “Think brain not to blame.” 

These messages are important, and I understand where they come from.  They reflect values I share: compassion, dignity, and a desire to see disabled people understood rather than judged. 

But when these messages are repeated without space for other realities, they can begin to feel suffocating.  They do not allow a safe space to share my distress or trauma of living in a violent home.  The fear is internalized. 

The Pressure to Be More 

Over time, a quieter message can emerge beneath the surface: 
• that I am not trying hard enough 
• not kind enough 
• not accommodating enough 
• that I simply need to have more compassion 

This messaging appears in many places: 
• professional training designed to help us “parent better” or “understand our child more” 
• guidance materials 
• online support spaces where the emphasis is often on doing more and staying positive 

Instead of feeling supported, I often feel judged. 

A Disconnect From Reality 

What makes this harder is the gap between the experiences often discussed and the reality I lived with. 

Many conversations about “challenging behaviour” do not reflect the severity of situations like mine and other like me.  My daily reality included: 
• constant fear 
• hypervigilance 
• anticipating harm 
• managing repeated violence in my own home 

There is very little space to speak openly about this level of intensity, especially without being redirected back to understanding  the child. 

Too often, the focus returns to what I should change, how I parent, how I respond, how I accommodate my child’s disability, as if I am not already doing that constantly, every day, to try and keep myself, my other child, and even our pets safe. 

Recognising the seriousness of harmful behaviour does not reduce my child’s dignity.  It reflects the reality of our situation.  I understand, perhaps more than anyone, that this is brain-based behaviour.  I do not love her any less. 

The Emotional and Physical Impact 

Living in this space creates an ongoing internal conflict. 

I feel like a failure, not because I don’t care, but because my honest emotional responses do not align with what I feel I am expected to feel. 

I feel anger at the idea that compassion alone should be enough to manage situations that are, in reality, extreme and unsafe. 

And I feel isolated, because expressing that anger is often met with correction rather than understanding.  When my experiences are minimised, it can also mean that action outside the home is not prioritised, that additional support is not pursued, and that meaningful intervention is delayed. 

Alongside this, there is a broader and often unspoken reality: many parents in situations like mine live under years of chronic stress.  The combination of constant vigilance, repeated exposure to violence, and the demands of a high-intensity caregiving role can take a significant toll on long-term health.   

Over time, this can contribute to: 
• chronic stress-related conditions 
• physical health decline 
• burnout and exhaustion 
• lasting impacts on mental wellbeing 

This is not simply about coping in the moment it is about the cumulative effect of living in a sustained state of alert and responsibility, often without adequate support for years. 

I am a family violence survivor, but I have never been acknowledged as such.  Imagine how that feels, to be minimised, told to accommodate more, or simply overlooked.  Yet this is what happens to families like mine, where violence exists within the context of disability. 

System Failures and Policy Gaps 

My frustration is not only with narratives, but with the systems that shape our lives. 

Decisions made by government departments and policymakers directly affect my safety and wellbeing, often without a full understanding of the realities families like mine face. 

The result is that: 
• support remains insufficient 
• eligibility thresholds are difficult to meet, especially if a child’s disability is not formally funded 
• and the burden of managing risk stays largely on the parent 

The Silence Within the Disability Space 

Within the disability space, there is a strong and understandable commitment to: 
• avoiding stigma 
• focusing on strengths 
• and believing in positive outcomes with the right support 

These are important and necessary values. 

But when they are held too rigidly, they can unintentionally create silence around more complex and distressing experiences. 

Families living with severe, ongoing violence can end up: 
• unsupported 
• unheard 
• and left outside the dominant conversation 

The Cost of Idealism 

The belief that “with the right support, and by accommodating need things will improve” is hopeful, and sometimes true. 

But it is not universally true. 

When this belief becomes absolute, it can lead to: 
• the minimisation of serious situations 
• an implicit sense of blame toward parents 
• and a lack of space to acknowledge when current approaches are not working 

For some families, this can feel less like support and more like absence. 

Towards a More Inclusive Conversation 

I am not rejecting compassion. 

I am asking for a more honest and inclusive conversation one that holds multiple truths at once: 
• that disabled children deserve dignity and understanding 
• and that some parents are living in unsafe and unsustainable conditions and this needs to be addressed not ignored 

Expanding the narrative does not undermine the values of the disability community.  It strengthens them by ensuring they apply to everyone within it. 

Final Reflection 

I share the core values of the disability community: respect, dignity, and understanding. 

What I am asking for is space, space to speak honestly about realities that sit alongside those values, even when they are difficult. 

Because without that honesty, families like mine remain unseen. 

And when parts of the community remain unseen, they are not fully supported