When Mark Smith, our contributing editor and longtime expert on innovative products, died in November, he left a vacuum that is yet to be filled in either the broader SCI/D community or New Mobility. As the self-described Wheelchair Junkie, Smith was the go-to expert on everything to do with wheelchairs, from the lightest manuals to the fastest powered. Yet he had another side to him that those who visited his Powerchair Diaries came to know and treasure. A prolific blogger, he chronicled all aspects of his life as it happened, from his deep love for his children to humorous “slice of life” observations to heartachingly vulnerable accounts of growing up with cerebral palsy and parents who struggled with addictions. Here we present a few selections from the Powerchair Diaries. To read them all, visit Powerchairdiaries.com.

At the Heart of Special Needs

Posted on Sept. 6. 2018

Annabelle was 5 when she came into my life. It was among my truest blessings, not just because of my own yearning to continue being a round-the-clock parent since my oldest daughter was finishing high school and going off to college, but because of the beautiful child Annabelle was. She exuded a joy and carefree zest for life that simply isn’t found in most people, even children.

Any time that we marry someone with children, it’s often said to be a “package deal,” but this union was far beyond such simple words. This was the universe bestowing me among the most precious gifts in my life — a wife and a second daughter.

We often hear of “special needs children.” In raising my oldest daughter, Emily, I always took issue with that term because every child has “special needs,” where our role as parents is to identify and meet each of our children’s needs, unique to that child. In raising Emily from birth through graduate school, I’ve been aware of the many “special needs” she’s had along the way.

Annabelle, likewise, has special needs. But again, like all children, hers are unique. Annabelle has spina bifida and autism. She’s wicked smart and has a sense of humor that has those of us around her laughing most of the time, but she doesn’t have “typical” interpersonal interactions. There’s no I-love-you, which makes her hugging her mother or occasionally holding my hand so powerful within our hearts.

As parents, my wife and I ensure that Annabelle has everything she needs, from skilled nursing care, to a special bed, to her own play room. I didn’t realize how much Annabelle recognized me and my dedication to meeting her needs until one night in our van. She was watching YouTube videos on her tablet while my wife took our groceries into the house.

Suddenly Annabelle dropped her tablet in a spot on the van floor where neither of us could easily get it. She became upset, panicking, and I realized that if I reclined my seat back, I might be able to grab the tablet. As I did so, it put me in proximity to Annabelle, and she began patting my shoulder, repeating, “Mark! Mark! Mark!”

This moment was profound because she doesn’t address anyone by name. Her addressing me directly in her moment of desperation was both heartbreaking, as she was so upset, and breathtaking because she was reaching out to me for help.

Fortunately, I scooped up the tablet and handed it to her, crisis ended.

Annabelle’s father will rightfully always be such. However, being acknowledged as her “Mark” in her time of need was among the most heartfelt moments of my life.

Taking Off My Shirt

Posted Feb. 6, 2015

I struggle with body image. I know that many of us do. Yet, my struggles with body image take a different turn than most. While many who struggle with body image want to conceal their body, I want to reveal mine.

We live in a society where outer image is powerful. Yet, it’s rarely accurate, and that holds true in my case. As a man with severe cerebral palsy who uses a power wheelchair, I embody the blatant fragility of disability in the eyes of many. Yes, I dress well, but whether in a button-up shirt and chinos, or a suit and tie, I’m the portrait to many of a contorted figure in a power wheelchair: fragile, needing help, and certainly asexual.

And nothing could be farther from the truth. Underneath my clothes, there’s nothing fragile, helpless or asexual about me. Beneath my socially-concealed body is my true self: masculine, muscular and edgy. While society can project assumptions on me when I am clothed, the truth is told when my shirt comes off and the real me is literally exposed.

Counting Fish

Posted Nov. 17, 2017

When I first met Chris at the medical center, I wasn’t sure what was up with him.

Chris sat next to me awaiting blood work. He was in his early 30s, with dread¬locks and crazy-colored basketball shoes. A sweatshirt and sagging pants rounded out his urban look.

His first words to me were, “Do you go up and down in your chair for fun?” observing my power wheelchair’s elevating seat that takes me from sitting to standing height.

I gave him my standard answer, that it’s really about increased independence and social inclusion.

“I get that,” he said with enthusiasm. “But if it were me, I’d be going up and down all day long for fun.”

I wasn’t sure what to make of him. His comment seemed a bit odd but totally sincere. At that moment a nurse came out and embraced Chris with a big hello. I’ve learned that in medical settings you can tell a lot about a patient by the way nurses respond to them. You sense who’s “family.”

There’s a large, commercial aquarium in the medical center’s waiting area where children inevitably gather to watch the myriad of fish. As a little girl stood staring at the fish tank, Chris walked up.

“Have you ever tried to count fish in a tank?” Chris asked, pointing at the mixed pool of fish. “Watch …”

Chris began counting the fish one by one until they scattered and he could no longer count them.

“You try,” he said, and she did, the fish scattering again. “See, it’s impossible,” he said and the little girl laughed.

Chris’ girlfriend was with him, and as we waited, he’d jump on the other side of a glass partition and make funny faces. I couldn’t stop watching him and smiling.

Soon, both our names were called for our respective appointments. The center has four private suites for those with more complex needs or privacy concerns. Based on my situation, cerebral palsy and all, I get a private suite for something as simple as a shot.

As my wife and I entered our private suite, Chris and his girlfriend entered the one next to us. Several nurses followed him in with a cart full of medical supplies like I’d never seen. He told me earlier that he had both multiple sclerosis and cancer — and the suite and the nurses and the cart hit it home to me, with heart-sinking gravity.

One could easily wonder about Chris, how it is that someone facing such profound health conditions and a seemingly unknown future can move through the world with such carefree joy.

[fusion_imageframe image_id=”24588|full” max_width=”450px” style_type=”” blur=”” stylecolor=”” hover_type=”none” bordersize=”” bordercolor=”” borderradius=”” align=”center” lightbox=”no” gallery_id=”” lightbox_image=”” lightbox_image_id=”” alt=”” link=”” linktarget=”_self” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]https://www.newmobility.com/wp-content/uploads/Elevated-Wheelchair-Junkie.jpg[/fusion_imageframe]

When We’re De-Elevated

Posted Jan. 30, 2015

My family and I went to see the famed Rockefeller Christmas tree, and it was more crowded than anywhere I’ve ever been. However, because my power wheelchair has an elevating seat that places me at 5 foot 7 inches tall, I worked my way through the crowd slowly but surely, eye to eye with those moving about, and people smiled at me, gingerly moving aside as needed for my 24-inch-wide power wheelchair to pass.

As we got closer to the tree, the crowd became so dense that I couldn’t see the ground, merely following the heads in front of me. Suddenly my power wheelchair dropped down a medium-height curb leading to the tree. Although the unexpected curb startled me, all was fine and we continued, shoulder-to-shoulder in the crowd, finishing with a classic family photo of the tree behind us.

We worked our way back through the crowd, and I watched carefully for the curb, knowing that while I couldn’t climb it while elevated, I could lower my seat to standard wheelchair height and safely drive up it.

As I reached the curb, the crowd continued flowing around me — that is, until I lowered my seat. Suddenly, at typical wheelchair height, my world changed. It was literally darker, more confined and, most shocking to me, I became invisible. While moments earlier I was at standing height, level with the crowd, now people were slamming into me, falling on me, oblivious to the fact that I was “down there.” I’d gone from a person in the crowd to suddenly invisible and of no stature simply by lowering my seat.

I yelled to my fiancée and, in a panic, I charged the curb, clipping people along the way. It felt like it was life or death — I was both fighting and fleeing.

Once up the curb, I quickly elevated my seat and as people immediately began safely flowing back around me, I took a deep breath, composed myself, and realized a universal truth: Being invisible to society is terrifying.

For me, that was an experience I’ve culturally known in other ways as a man with a disability. Beyond the change in physical stature I described with my elevating seat, I’ve been de-elevated in social stature at times.

I was fortunate amidst the crowd at Rockefeller Center that eve because at the touch of a button I elevated back to being seen. However, for many, the experience of being de-elevated often isn’t so easily resolved. When we’re dismissed by others and made to feel invisible, there is no button to push. Rather, the experience of being made invisible based not on our character, but on the ignorance, stereotyping and discrimination of others … well … just hurts.