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.
A Pentecost Study: Part 3 - Wind
“Suddenly a sound like the blowing of a violent wind came from heaven and filled the whole house where they were sitting.” (Acts 2:2)
Wind is one of the oldest and most mysterious images of God’s presence. In Hebrew, the word ruach means wind, breath, or spirit — the invisible movement that gives life. In the beginning, the Spirit of God hovered over the waters (Gen. 1:2), stirring creation into being. Later, God breathed into Adam’s nostrils the breath of life (Gen. 2:7). The same breath that moves the air also animates the soul. Wind is not seen, but its effects are felt — it moves, fills, and transforms.
Living with a progressive condition teaches you to recognise patterns, the shifts, changes, the way FSHD reshapes strength, posture, and movement. I have written about the years of falling, pain, feeling trapped in a body like this, the early arm weakness, the journey into mobility aids, the fear of using a chair too early, the misdiagnoses, the institutional barriers, and becoming a full time powerchair user. Despite all the years and the ever evolving health, my rare condition continues to surprise me as the FSHD world keeps progressing.
