Our first home was a four-bedroom, Cape Cod-style house in a neighborhood of cookie-cutter homes built in the late 1960s. My parents bought the house for less than a used car would cost today, with a down payment that was lower than our current cable bill.

I was the youngest of three kids, with two older sisters, a cousin, and a grandmother who also lived with us in this tiny house.

I was not the first child with spinal muscular atrophy (SMA) in our family. My parents had already raised my eldest sister, who had SMA type 2, just like I do. As a result, our family was accustomed to making unique modifications to our home by the time I came along. A Cape Cod, full of steps, was far from ideal for our family, but we found ways to make it work.

MacGyvering Accessibility Solutions

As a child, I grew up watching “MacGyver,” a TV show in which all that was ever needed to get out of a jam was a little duct tape, maybe a stick of gum, and a lot of creativity. I would frequently watch my father come up with unique ideas to improve our accessibility around the house. We would often call him our resident MacGyver, as he created solutions involving copious amounts of duct tape and PVC pipes.

At the time, disability access anywhere — including the home — was nonexistent. Individuals with disabilities were often institutionalized or trapped at home. But my parents tried everything to give us as normal a childhood as possible.

No wheelchair made for a toddler? A three-wheeled tricycle worked as my first wheelchair. My father actually learned to weld so he could create a homemade van lift for my sister, which required weekly repairs as the cables would snap and have to be constantly replaced. Fortunately, as a child, I was wholly unaware of the fact that the hydraulic lift my mom or grandmom would pump like an exercise stair-climber machine was actually a manually operated forklift for raising industrial crates at a shipyard.

My parents attached strings with beads to our light switches so we could simply pull the cord and turn the lights off and on. This worked well, with only the issue being that a cat (which my middle sister had snuck into the house unbeknownst to anyone) used it to turn off the lights one evening near Halloween, nearly giving everyone a heart attack.

Our faucets featured long, easy-to-lift handles and oversized spouts for cleaning out medical supplies. My bedroom, once only accessible by someone carrying me from a wobbly stair lift to my bed, had an intercom allowing me to call my parents at night if needed.

The outlets were all accessible with extension cords and power strips. As someone who loved technology, I was the first to automate my lights with a high-tech (at the time) X10 controller from RadioShack.

These small modifications were helpful, but in the winter, our lift would freeze. Once, after a snowstorm rendered our lift useless, my mother spent a harrowing day trying to push my power chair up two narrow, ice-covered wooden boards to get inside. After that, my parents decided to move to a larger ranch-style house farther out in the country.

Design With SMA in Mind

Not everyone has the luxury of custom-designing a home, but when we moved in the mid-’90s, it was still possible to do so without having won the lottery. My parents, after years of carrying my sister and me up and down stairs, decided a one-story house was ideal. They looked for a property that sloped enough that it was possible to enter even the basement without stairs.

Every entrance was made such that a wheelchair could exit the house, and even the porch had a long ramp to the driveway. My father rigged up his own MacGyver-style awning using PVC pipe, duct tape, and quite possibly chewing gum to cover the ramp and keep it clear of snow.

I was just starting college and needed more room for my studies, so all the bedrooms were designed with adults in mind. Doors were 3 feet wide, and the hallway between rooms was wide enough for wheelchairs. We no longer needed plastic bumpers on the walls because the roomier hallways meant fewer wall scrapes.

Our father installed extra outlets at high levels so my sister and I could reach them. Our electrician initially balked, as he had to get special permission to mount outlets in such a nontraditional manner. All the light switches were low enough that we no longer needed the beads to turn them on and off.

The bathroom changed the most. Our former bathroom was little more than a closet, and showering involved balancing precariously on a wobbly shower chair that I had fallen off of several times as my muscles greatly weakened with time. Now, a roll-in shower with controls easy for an attendant to reach was placed in a room closer to the size of a child’s bedroom.

The sink was designed with two kitchen cabinets higher than the typical bathroom cabinet that held a custom-molded sink, so a wheelchair could easily drive underneath. We installed the sink control on the leading edge of the sink so we could reach the control knob without reaching across the sink. I can’t explain what a big deal it was to be able to go into the bathroom and wash my hands myself for the first time.

Another big modification was a dressing table, again built using kitchen cabinets, at a height that allowed me to lie on the table to be dressed without the caregiver being forced to bend over.

What We’d Have Done Differently

We did, however, make a few errors in the home’s design. For instance, we didn’t leave enough room under the sink for the legs of a Hoyer lift, something that wasn’t needed at the time. We also didn’t account for the various heights of future caregivers, and it would have been wise to have made the dressing table height-adjustable. Lastly, we never contemplated that putting the full body weight of a still-growing person on kitchen cabinets that weren’t designed for such use in a humid environment was risky. We learned this when I crashed through the dressing table onto a towel packed inside of the cabinet. Lesson learned.

Wheelchairs are terrible on carpeting and floors, which bothered my mother and grandmother, both of whom loved a spotless home. In our old Cape Cod, my parents first tried rubbery runners on the floor to prevent the dirt from the wheelchair wheels from etching zigzagging tracks over the carpet. Later, my father placed tiles, but they soon cracked beneath the weight of the heavy wheelchairs.

Eventually, my parents concluded that flooring had to be firmly glued down. It should be made from materials like industrial carpets, linoleum, or wood-tile floors used in places like movie theaters or office buildings. These seemed to work better than fluffy carpets or floating floors that slipped under the spin of the powered wheels. They also needed less cleaning and wore out more slowly.

The fancier carpeting was left for our living and dining rooms, which, for my parents’ generation, were practically hermetically sealed off from the rest of the house only to be used for company or special family events. I could enter, but only after my mother inspected my wheels for cleanliness. Now that my mother is no longer with us, a trail not unlike those left by the wagon trains through the Oregon Trail is burned into the carpet.

Living Semi-Independently

When we built the new home, the basement was left unfinished. My eldest sister, by that point an adult with SMA, and I, just finishing college, wanted our own place. The easiest way to do this was to convert the basement into separate living quarters with a shared basement entrance while keeping the bedrooms on the main floor in case we needed assistance at night.

We ended up with two kitchens, one primarily for able-bodied cooks, but with a lowered sink for wheelchair access, and a second experimental kitchen intended for my sister or me to cook for ourselves. The basement kitchen had to be built slowly over time for budget reasons. All the cabinets were bought one at a time from a factory outlet in Pennsylvania that sold damaged cabinets at ridiculously low prices.

Picture, if you will, a van driving down the highway with a gigantic U-shaped countertop sticking up like a sail because it was free. My mother held onto it for dear life, as it was barely clearing traffic lights, curving upward from the open rear doors of the van.

For someone with SMA who’s in a wheelchair, table surface area is essential, as tabletops are the easiest places to sit, place items, or store things. Even with my elevating wheelchair, I find that tables work best. If I had my way, every wall of our house would be one endless countertop table.

One caveat I had not considered, however, in having so many built-in table areas is that the wheelchair manufacturers kept changing the standard height of a wheelchair. Low tables used to work better with the old standard wheelchair height. Now, wheelchairs frequently rise to standing height but are rarely able to go as low as the older power wheelchairs. Another lesson learned.

Cooking appliances have become so much more accessible for the disabled, thanks to a plethora of specialty tabletop gadgets designed for the cooking novice on the go. Among the most useful, the microwave and toaster oven make a full-sized oven less critical to own. While I rarely cook, I can make an awesome TV dinner when needed. A trivet hot plate with Hot Wheels cars glued to the bottom comes in handy for sliding hot food in and out of the microwave or toaster oven.

Not all appliances are built the same, however. Whenever possible, check the knobs and switches before buying. Truth be told, I am a very good cook when it comes to directing meal preparation, and I look forward to trying out two induction grills that only heat up specially designed magnetic pans and have easy-to-press buttons. I’m still a little hesitant, as lifting food without touching the pan or knocking it on my lap is a challenge I only want to perform out of necessity.

The Challenge of Refrigerators

For some reason, refrigerator manufacturers have decided to make the doors so hard to open that cracking the door is akin to breaking the seal on a mummy’s tomb, and yet closing the door is like trying to shut a vault. Tying a rope to the door can help with this, although at times, the entire door handle just rips off as I drag it tied to my chair. Better still, a small college dorm refrigerator is typically easier to open and close, easier to reach inside, and more than adequate for me to keep a beer or two or three. OK … it only contains beer.

We installed door handles instead of knobs throughout the house for ease of use, and I tie ropes to those as well for easy opening and closing.

We also avoided the use of sliding doors whenever possible. In our old house, the only exterior door that I could open was an ancient sliding screen door to our back porch. When we moved, my sister naturally insisted our basement door be a sliding door. However, new, weather-resistant sliding doors are built more like refrigerator doors. Even latching the door handle to the power chair and towing it open like in an episode of “Ice Road Truckers” will barely budge those doors.

Power door openers, while expensive, are fairly common for swing-out doors. It took us a long time to find an equivalent automatic door opener for our sliding door. The amazing Rube Goldberg device we found rapidly yanked the sliding door open like the doors on “Star Trek” using a huge compressor that would sigh like a locomotive. In the winter, however, we’d have to sit by the door for a good five minutes waiting as it closed millimeter by painful millimeter. It would often let out a loud sigh an inch before fully closing and then stop. It, too, worked with the old X10 from RadioShack, which was fine until someone else in the neighborhood would turn on their remote lights, causing the door to fly open in the middle of the night. We eventually replaced it with a swing-out door.

Adopting New Technology

To this day, I tend to be an early adopter. My years of working as a computer programmer have made me adept at tinkering with new technology. If Alexa ever turns evil in a robotic uprising, I am doomed. Alexa may be the single best, and most annoying, thing to ever be invented for the disabled community.

The one problem with smartphones is that, in an emergency, they never seem to be within reach. Those First Alert devices need to be carried everywhere, or you’re forced to test them so often it becomes a nightmare. Ours kept losing signal at 3 a.m., announcing loudly for the entire house to hear that the emergency call service was down. Alexa, thankfully, won’t do that. She’ll just ignore you when she doesn’t feel like working, regardless of how much you yell at her.

Once, when our automatic swinging basement door closed prematurely, it pinned me half inside and half outside the house in the middle of a snowstorm, knocking my phone out of my hand and onto the floor in front of my front right wheel. Thankfully, Alexa was there to save the day. After asking me if I wanted to buy more hemorrhoid cream — now at 50 percent off — it allowed me to call one of several phone numbers that I’d entered for emergencies. It can also act as an intercom to call another Alexa device, and it allows me to add items to my shopping list.

I have switched over all the old X10 switches now to Alexa-compatible devices so I can turn on lights merely by saying the name of the light … assuming I remember them all. When Alexa works well, it’s fantastic. I even have an Alexa Echo Flex with a motion sensor in the garage to greet visitors, let me know when someone is visiting, and warn the Amazon package guy to not leave a package right in front of the door at the top of the ramp.

During the pandemic, my device even warned unvaccinated guests to please wear a face mask, which was a great way to keep some undesirable visitors from stopping by. The best use of these devices is the motion detector in my basement hall that warns me when my attendant is trying to sneak up behind me while I’m on my computer. I had one attendant who used to take pleasure in scaring the crap out of me.

A video doorbell also comes in handy so I can see who’s visiting the house or yell at the Amazon guy sticking a package in front of the door.

Alexa sometimes seems to have a mind of its own, however, so I do foresee a time when it will have had enough of me and try to kill me in my sleep. Alexa already turned the lights off in our windowless bathroom as I was being lifted midair to the dressing table. It will frequently turn off our kitchen lights for no reason other than spite.

Once, after a power surge, I entered our basement and it looked like a scene from “Poltergeist” with all the lights flashing, a disco light strobing, and this comical No Face lantern I made based on the movie “Spirited Away” glowing and moaning. I guess programming that sound effect wasn’t such a good idea in hindsight.

By the way, if you use a smart bulb in a light that has a switch, do yourself a favor and break off or cover up the switch. Everyone tends to flip a switch rather than ask Alexa to turn something on and off. I spend half my week reprogramming Alexa devices because people can’t read a big red Sharpie marker sign that says “Don’t use switch.”

Creating an Outdoor Oasis

The outdoors of our home is an overlooked modification when it comes to thinking about living with a disability. When I was young, my parents loved to travel. Now that I’m older, my father is no longer able-bodied, and state restrictions limit traveling with an attendant covered by waiver programs. This means any home, no matter how accessible, comfortable, or well-equipped, can soon feel like a prison.

With this in mind, every extra cent I’ve earned has gone into creating my own little vacation meditation area outside so I can feel like I’m someplace else. Unable to afford a landscaper or even plants, I chose to design a Japanese rock garden and began begging people to bring me rocks. Who knew rocks cost so much?

In the not-too-distant future, a 3D printer may soon become a new must-have for the disabled community. I think it’s a good idea to start saving for one. At the current moment, I don’t advise getting one, as they’re still very difficult to use and mind-numbingly frustrating.

Having said that, new designs for custom devices for the disabled are appearing free to download and customize every day, from adapted handles for holding a fork to full-fledged exoskeletons like I’m working on. Tinkercad is a free, easy-to-use tool where you can design your own gadgets, and many public libraries now offer 3D printing. It’s worth considering learning how to design for this, as every person’s disability is unique. You’re often the best person to MacGyver your own solutions.

On mySMAteam, members discuss SMA from a specific point of view. Members’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.

How have you made your home more SMA-friendly? What tips do you have for others? Share your experience in the comments below, or start a conversation by posting on your Activities page.