Wondering why expensive accessible home renovations also come with guilt

Today, the cabinets, tiles, and other materials for our new kitchen were delivered, and suddenly the renovation feels real. I love the cabinet colors, flooring, backsplash, and everything else I picked out. But now that it is all here, stacked in boxes and waiting to be installed, I keep worrying that I won’t like my choices once I see them together.

Still, it isn’t only the look of the kitchen that is making me anxious. It is the function. Because I use a wheelchair due to Friedreich’s ataxia (FA), almost everything being installed has been chosen with accessibility in mind.

And accessibility, I am learning, often costs more. My new sink, for example, is shallower than a traditional sink so a wheelchair user can fit underneath it and reach the faucet and basin. It uses less material, yet it costs more than a standard sink.

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The designer we worked with measured me and watched me move around the kitchen, yet I still worry. Will I actually fit under the sink? Will I be able to reach what I need? Will this beautiful, expensive kitchen really make daily life easier?

Trust the process and the experts, I tell myself. But another voice whispers that I am causing us to spend money that could have been a cushion for retirement. What if we spend all this money and things still don’t work the way they are supposed to?

That is when the guilt rises. My husband, Dave, and I are spending more money because the kitchen needs to be accessible. It is what I need in order to cook, clean, reach, move, and participate in my own home. But it is more expensive. Because of my FA, we are spending more. I know my guilt isn’t warranted, but I feel it anyway.

Dave tries to talk me out of it. He reminds me that we saved for this, that we earmarked this money to make our life better, safer, and more livable. He tells me it is worth it. I believe him, and still, guilt has a way of slipping past logic.

I try not to carry guilt, but …

This is not the first time I have felt guilty for being disabled. FA demands that I cost more, need more of my loved ones’ time, and require much more self-care than the average person. I am high maintenance. I say that with a little humor, but also with a lump in my throat. I know I did not choose this disease. I know I did not ask for my body to need ramps, grab bars, wider doorways, lower counters, lighter dishes, extra appointments, expensive equipment, and constant planning. Still, sometimes it feels like every accommodation comes with a price tag and my name printed on the bill.

The guilt is especially sharp because I love my family. I want Dave to have ease. I want our future to feel secure. I want to be the wife who contributes equally, not the reason we have to rethink every doorway, appliance, vacation, errand, and budget line. When I picture the extra money going toward accessibility, part of me sees freedom. Another part of me sees sacrifice, and that is the part that hurts.

But I am trying to learn that needing things is not the same as being selfish. My accessible kitchen is not a luxury just because it is expensive. It is a way for me to remain part of the rhythm of our home. It means I can rinse a dish, make coffee, chop vegetables, reach a cabinet, and do ordinary things many people never have to think about. Those ordinary things matter deeply when a disease keeps trying to make them extraordinary.

So I remind myself, again and again, that accessibility is not indulgence. It is dignity. It is independence. It is participation. I am allowed to need what I need. I am allowed to take up space in my own life. I am allowed to build a home that fits my body, instead of forcing my body to struggle through one that was never designed for it.

The guilt may not disappear when the kitchen is finished. I might still look at the sink and think about what it cost. But I hope I will also roll under it, turn on the faucet, and remember what it gives back. I hope I will let myself feel grateful without immediately apologizing. I hope I keep reminding myself that I am worth the investment, not because I am productive enough to earn it, but because I deserve to live as fully, safely, and comfortably as possible.

I will share the before-and-after pictures here when the project is done.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.