Growing up with something I didn’t know I had was painful. I didn’t understand anything, or why I felt anxious, or why life felt harder. I just knew that things didn’t come as easily, and the world didn’t feel like it fit. I didn't fit. I couldn’t explain it. No one around me talked about it. So I didn’t either — not even to myself.
I liked me, I didn't wish I was different. I’d spent my whole life with myself, being me. It wasn't me that needed to change – instead, others needed to change. They should have wanted to be helpful, supportive, understanding, tolerant, and patient.
School should have done more to push for help from my parents, instead of giving up, because the line had gone silent. They should have persevered.
Instead, they ended up ignoring what they were seeing with me and as a consequence academically, I struggled to make headway in school – failed to keep pace with my peers and then subsequently failed school. I didn't fail me.
I needed time. I needed understanding. My struggles were visible. I wasn’t hiding them. My parents knew what I was dealing with. That’s what makes it harder. I didn’t know what it was – but they did.
Knowing, and doing nothing, isn’t the same as not knowing. And children shouldn’t be left to carry the disability or the name, especially when adults have the name and they know about the disability.
Discrimination isn’t just about what people mean to do. It’s about the effects of what they don’t do.
Saying nothing, or "we didn’t know how" or "we didn’t realise" doesn’t make it okay. If a need is there, there is a duty to respond. When that doesn’t happen – even through inaction – that can still be discrimination. I’ve lived on the other side of that. I’ve felt what that silence does.
Schools should notice. And they should keep noticing, even when it’s difficult. Especially then.
The Equality Act 2010 protects people from being treated unfairly. It doesn’t just look at whether someone meant harm. It looks at the impact.
If a child has a known condition, and the school or family fails to make space for that, or make adjustments – that’s not just unfortunate. It can be unlawful. There’s a duty to act. Fairness isn’t about preference. It’s a legal requirement.
Ignorance can explain things. But it doesn’t justify.
No child should grow up feeling invisible. No child should feel they have to carry something alone, just because others don’t and won't speak out or about it. No one should have to live their lives with a physical, mental and emotional disability "unseen."
Awareness is the first step. But it’s not enough. People — schools, families, systems — have to act. Because silence isn’t neutral. Silence leaves scars. I am massively scarred. Somedays I struggle with the enormity of what I was made to live through. Failings, after failings after failings.
"What I experienced wasn't just hard, it was harmful – over a period of 4 decades; harmful. Harm left unspoken, unacknowledged, and unhealed becomes trauma. I write this, so others will know – you are not alone, and you deserved better."
The truth is I have been struggling to write this blog, article, whatever you want to call it – not just with the words, but with how it makes me feel. But for the first time, I’m sitting with the uncomfortable truths – my truths. When it comes to describing my experiences, I’ve often scooted around the truth to save face and to protect those who were supposed to protect me.
I need to speak my truth no matter how uncomfortable. I’m sorry if that doesn’t sit well, but I can’t silence myself anymore. It's making me sick. This is the bold truth, told with care — and I will keep telling it.
Keep sharing your truth, Ilana.
Thank you, I will. I’m still learning what it means to share my truth in ways that feel safe. Sometimes I may hesitate, not because the truth isn’t there, but because I’m still figuring out how to live in it, without apology.
My words still feel raw, like my experiences happened yesterday. Your words remind me that it's okay to speak from the middle of things. So I’ll keep showing up, messy and real.