The Weight of Ordinary Things

Most people do not think about the distance between a parking space and a doorway. I do.

I notice the slope of the pavement, the height of the curb, and whether the “accessible” entrance is actually accessible. I look for cracked sidewalks, narrow aisles, heavy doors, and tables too low for my wheelchair. Before I go anywhere, part of me has already traveled there, measuring the obstacles.

My wheelchair gives me freedom. It carries me farther than my body could go on its own. But it also makes visible what the world has failed to consider.

Cerebral palsy means my muscles do not always respond the way I want them to. Movements that seem simple to others can require intense concentration. Some days, transferring out of my chair feels manageable. Other days, my body stiffens or refuses to cooperate. I may need help getting dressed, reaching something on a shelf, or picking up what I have dropped for the third time.

The frustration is rarely one dramatic moment. It gathers slowly.

It is arriving at a building only to find steps. It is discovering that the accessible restroom is being used for storage. It is having someone grab my wheelchair without asking, as if the chair—and therefore my body—belongs to anyone who thinks they are helping. It is watching people speak to whoever is beside me instead of speaking directly to me.

Sometimes I want to shout, “I am right here.”

There are days when I am angry at my body. Then I feel guilty because this body is mine, and it has carried me through everything. My wheelchair is part of that survival. It is not a prison, as some people assume. The prison is a world designed as though bodies like mine do not exist.

Still, gratitude does not erase exhaustion. I can value my wheelchair and still resent needing to plan every movement. I can appreciate the people who help me and still wish I did not have to ask. I can be proud of how far I have come while grieving the ease I have never known.

That grief becomes heavier when I think about growing older.

I wonder what years of pushing, transferring, reaching, and compensating will do to my body. My shoulders already perform work they were never designed to do every day. What happens when they weaken? What happens if pain makes it harder to move my chair or lift myself? Will I need more assistance? Will I still be able to live where I choose?

Aging frightens many people, but disability gives that fear sharper edges. I worry about losing independence—not because dependence makes a life less valuable, but because support is never guaranteed. Care can be expensive. Accessible housing can be difficult to find. The people I rely on will grow older too.

Sometimes my future feels like a ramp disappearing into darkness. I know it continues, but I cannot see how steep it becomes or whether there will be a railing when I need one.

My deepest fear is not simply that I will need more help. I already know there is no shame in needing help. I fear that as my needs increase, other people may begin to see less of me. I fear becoming a list of tasks: transfer, dress, feed, bathe. I fear people speaking over me, making decisions for me, or confusing physical limitation with an inability to understand my own life.

But I am more than the care I require.

I am still the person with strong opinions, private dreams, bad jokes, and favorite songs. I am someone who remembers small kindnesses and notices when the light changes near the end of the day. Cerebral palsy shapes the way I move through the world, but it does not contain the whole of who I am.

I cannot promise myself that growing older will be easy. It probably will not be. I may lose abilities I have fought hard to maintain. I may need different equipment, more assistance, and more courage than I think I have.

What I can promise is that I will keep insisting on my humanity.

I will ask for help without apologizing for existing. I will be angry when the world shuts me out. I will rest when my body has reached its limit. I will mourn what I lose without pretending every hardship is secretly a gift.

And I will keep searching for honest joy: a clear path, a door that opens automatically, a conversation in which someone sees me before they see my chair. The feeling of moving freely across a smooth floor. Sunlight warming my face as my wheels turn beneath me.

I do not know exactly what waits at the end of the ramp.

For now, I keep moving forward.

Respond to this essay

Sign in with a Disqus account to join the conversation. Guest responses are disabled.