Medical device design needs to be more inclusive, personalized

My mother tried persuading me to get a hospital bed at home for years.

“Your uncle can help us source one that the pediatric hospital doesn’t want,” she said at one point.

“Our neighbor doesn’t need hers anymore. She offered it to us. Do you want it?” Mom asked at another point.

Cost wasn’t the issue for me. I mean, it was something I considered, yes — God knows the thousands a remote-controlled bed would cost made me feel prematurely guilty. But it wasn’t the main reason I didn’t want a hospital bed in the house.

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Home was supposed to feel like home. When I was a kid, that meant I slept in a bed with stars, the moon, and the sun carved into the headboard. My whole room had an intergalactic theme. The wardrobe was adorned with glow-in-the-dark butterflies. A hospital bed, with its boring, chunky frame, would’ve felt out of place.

By extension, I would have felt out of place. I would have felt like an SMA patient, not a person. At home. Every atom of my body wanted to resist the very thought.

The space-themed bed frame eventually had to go, but I didn’t mind. I was in my mid-teens by then, and the kids’ room needed some reconfiguring to fit a third child, my baby half-brother. In its place, I was given a sleek design in dark wood, fit for a modern young lady coming of age.

A hospital bed, with its typically off-white materials, would’ve been closer in design to my childhood bed. And fancier.

I continued to detest the concept of bringing one into my home until my mid-20s.

She’ll say, ‘I told you so,’ but …

In the end, I lost this particular argument with my mother.

She was right. Having a hospital bed at home has done me more good than I thought it would. By raising the upper half of the bed to a slight incline, gravity doesn’t press me down as much. With the added constant shifting of the powered air mattress deflating and reinflating, I can still get pressure relief without adjusting my position every hour.

I can eat in bed, half lying down, when my chronic back pain flares. My family doesn’t have to worry about me falling off when they can raise the rails on the sides.

It shouldn’t have taken debilitating pain and a six-month hospital stay for me to concede to my mom.

The feature I adore most about my new sleeping arrangements, though? The bed frame, made of light wood and a rustic design, doesn’t look like a typical hospital bed.

Medical devices in disguise

Last month, I was invited to present during a talk at a university. It got me thinking about the depersonalization of medical devices, and I recalled how my parents helped me roam around our house as a young kid: They simply purchased a manual toy car and a booster seat designed for any child, not specifically one with a disability.

Both my arms were functional back then, so once they placed the seat in the car and put my hands on the steering wheel, I could go anywhere I pleased. I could chase my brother around the house at a whim if it suited me — and I did. I didn’t need a wheelchair, and I didn’t feel like a disabled kid. I just felt like a child at play. I wish I could show you the stickers I put on the car as proof.

Later, my parents bought me a fancier, battery-powered car for trips to nearby parks and malls. They wanted to give me the same sense of independence and curiosity I had at home. Its bright yellow paint made it look like I was driving a mini version of Bumblebee from “Transformers.”

Unfortunately, I eventually grew too big for both cars and required wheelchairs as mobility aids. I don’t have a problem with the change, but I can’t say I don’t feel sad that growing up meant further medicalizing my life.

There’s probably a lot of internalized ableism in that sadness to unpack, I admit. Even if society portrays disability as negative, I shouldn’t fall into that trap. Powered wheelchairs may not be lacquered in Bumblebee yellow, but racing them is just as fun as racing a car.

At the same time, there’s something to be said about how kiddie cars and the appearance of my bed could affect my perception of my identity. We can acknowledge both concepts: that medical devices don’t define people, and that universal design is inclusive design.

Note: SMA News Today 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.