A Positive School Meeting

Two weeks ago I wrote about an incident with a staff member at Arty’s school. A week later, after my complaint, I met with the Head teacher. It wasn’t the best day. Miss L, offered to move the meeting but I wanted it done.

My nerves weren’t just about Arty or what happened that morning. After eighteen months of fighting for James, I knew school meetings can turn against you fast. I’ve watched schools hide mistakes rather than fix them. I’ve seen the system break my child. Those experiences entered this room with me.

This meeting felt different. They had a staff member take notes because I cannot. That alone was a small victory after everything that happened with James’ school.

Living With Photosensitive Skin: When Sunlight Turns Against You

I have written about almost every part of my body and health over the years. I have covered ASD, various diagnoses, mental health struggles, FSHD at every stage, disability, harm, thirty years of lived experience, and even personal battles like alcoholism and staying sober. Yet somehow, I have never written about the one condition that has followed me quietly through most of my life. It affects me all year round, although far more in warm weather. Polymorphic Light Eruption.

[Image 2. A patch of skin with redness and small raised bumps. The area looks inflamed and irritated, showing the typical reaction pattern of my photosensitive skin condition.]

Accessibility vs Usability

People often believe that if a space is accessible, it must be usable. These words sound similar, but they do not mean the same thing. Accessibility is the presence of something. Usability is the ability to use it safely, independently, and without barriers. The difference becomes clearer when you live with a disability and spend your life navigating the gap between the two.