When I travel, even if it’s just to a friend’s house, I carry with me a lot of stuff. Among it all is my most handy gadget and trusty companion: a voice amplifier, a small piece of equipment I found on Amazon for a reasonable price. The other…
Columns
I didn’t even know about the “Barbie” movie until I saw people talking about it on social media. I watched the trailer and thought, “That looks like a funky little movie.” But I wasn’t particularly enamored with it. I figured I’d watch it once it hit streaming services,…
Who doesn’t love the luxuries and amenities of vacation? Swimming pools, complimentary breakfast, new sights and experiences, and a freshly made bed to return to after a day of relaxation or adventure. Disabled people and our families also appreciate these comforts, but when you’re vacationing with SMA…
When I was in college, I had a professor doubt my abilities because I was disabled. I started struggling in their class early in the semester, so I went to their office for two reasons: to get extra help and prove I was determined (and doing what I could) to…
As SMAers, we’ve probably all been there. We work tirelessly to build a caregiving team. We train, explain, and expose the inner workings of our dignity. We allow new hands and energy into the routine of our daily needs. Our schedule finally cruises along swimmingly — then suddenly, life…
When I was growing up in Fort Worth, Texas, our family vacations were precious getaways. Time and money constraints kept us primarily in Texas, but there was plenty to do. During one summer trip to south Texas, we walked across the border to Mexico on a dreadfully sweltering August day.
On the last day of the annual Cure SMA conference, the closing session is always a panel called “It’s a Wonderful Life.” It features a group of adults with SMA talking about their daily lives and answering audience questions. Its core theme is that there are plenty of…
Our family loves vacationing by the sea, and we’ve recently returned from a trip to Roanoke Island, off the coast of North Carolina. Although we’ve passed through before, this trip was our first time vacationing in North Carolina. It won’t be the last. Waterfront views, fresh seafood,…
From the moment I wake up to the time I go to sleep and get lost in my dreams, I’m fully dependent on others to help me meet my physical needs. If I have to change positions in the middle of the night, I call for someone to assist me.
In my previous column, I explained how two years ago I was rescued by a heroic person in my life. Just as my main night nurse of eight years was moving away, a new day nurse of mine agreed to switch to nights. As relieved as I was to…
Recent Posts
- Smart devices help me make my house a home
- Europe-wide initiative identifies top 10 SMA research priorities
- Study reveals front and back of brain develop as two separate organs
- After 29 years of living with SMA, my body doesn’t know how old it is
- Disability invisibility and the loneliness of being overlooked with SMA
