Remembering Mark E. Smith
In November 2018 one of my personal life heroes passed away. His name was Mark E. Smith, he was 47 years old, and he had been affected by cerebral palsy since complications during his birth.
Mark had an indomitable spirit about him that was a combination of fierce resolve, anger, humor and unstoppable determination. While I never had the chance to meet him in person, though I wanted to, I feel that I know him well from his books and reading his blogs and articles for years. I discovered Mark in 1995, I was browsing through Powell’s Books, a huge book store in Portland, Oregon, one of my favorite destination spots in the city. There was a stand holding some new paperback books, and one of them caught my eye, Growing Up With Cerebral Palsy, by Mark E. Smith. At that time was dad to a son with a rare disorder and multiple disabilities for a few years. It was often a lonely and confusing time of my life, being a young father and so many times bewildered by the challenges that threw themselves in front of me, and especially threw themselves in front of my son. I didn’t know much about cerebral palsy but I could relate to some of the disabilities associated because of my son Adam’s disabilities. I read the back cover of the book, I read the first couple of pages, and I was hooked. I bought the book, and since that day I have bought many copies of the book, having given them away repeatedly. Today it is out of print and hard to find, but I keep a treasured copy with my desk book collection.
Mark is candidly honest about himself and his life. He chronicles his earliest memories up through his high school years depicting scenes, emotions, struggles, heartbreaks and triumphs that take a reader on a ride through tough questions, a few tears, laughter, but all ending with an inspiring hope that hallmarked his life.
His mother and step-father played incredible roles in his life, pushing him forward when he would stubbornly want to resign himself to his limitations, all the while surrounding him with an unconditional love and support. One of my favorite scenes he describes was the first time he had to take a bath on his own. By age 12, with one arm and two legs that were virtually immobile, his mother had been his principle care-taker which included his morning bathing and dressing routines. One morning his step-father declared it was ridiculous for a twelve year old boy to be bathed by his mother, determining Mark would learn to do it by himself. Infuriated by such a huge demand placed upon him given his extreme limitations, Mark retaliated with an “I’ll show you” response, wheeled himself into the bathroom, and though it took him a very, very long time, he managed to get himself from his wheelchair into the bathtub, scrub himself, and then dried, dressed and back into the chair, all on his own. The feeling of triumph helped fuel a fire in him to be independent, self-motivated and to work hard to overcome anything that threatened to inhibit him in leading a full, successful life. His mother never bathed him again.
Mark was an exceptionally brilliant student, testing at an IQ of 144, which he found hilarious against the fact that doctors and specialists had told his mother when he was little that he was a vegetable and should be institutionalized. His humor and his wit never left his side in any of his life challenges or experiences, bolstering a remarkable determination to beat any odds against him.
He loved to tell stories, and he was good at it. I enjoyed reading everything he wrote, which was often hard-hitting and he had little patience for people who would give up in the face of their challenges. He had even less patience for people who dismissed anyone with disabilities or special needs as having inferior possibilities. He was never afraid to challenge a teacher, a doctor, a therapist or anyone else who had any influence over his life. Some of those stories out of his experiences are amazing.
One of his stories as an adult man retells the events of a day he and his sister went to the mall to buy a vacuum cleaner. Mark had spent hours researching various models and their capabilities, demanding that the machine he would choose be adaptable to his needs to function from a wheelchair. At the store he engaged the sales lady in a long dialog about the vacuum cleaner he had chosen, making sure it would meet his demands, while his sister watched and listened. Finally he said, “I’ll take it.” At that the saleslady turned to his sister and asked quietly, seriously, “Is it OK that he buys this?” Mark heard every word. Being in a wheelchair does not imply a person is deaf, after all.
He turned to the woman, “Why did you ask her if I could buy it? I just told you I was buying it.”
“I didn’t say that,” the woman responded.
“Yes, you did, I heard you, and now why are you denying it? Why would you assume that my being in a wheelchair would inhibit my ability to make this purchase after all our discussion about it?”
The woman continued to deny and excuse her actions, patronizing Mark in subtle ways by treating him, a grown man, in a childlike and condescending manner. He gave her a strong piece of his mind, but it did little good, and in the end he did buy the vacuum cleaner. Heading to the car, which Mark drove, he apologized to his sister for causing a scene. “No way!” His sister replied, “That was awesome!”
Mark led an amazingly successful life, married, fathered a daughter, lost his first wife and married a second time, and participated in a business that designed power wheelchairs for people leading active, athletic lifestyles. He wrote, spoke publicly, and was a life-long advocate for the empowerment of people with special needs.
A very dear friend I only knew in spirit has passed, I was deeply saddened by his death and especially to learn of the pain and struggles he had at the end. My life forever changed when I “met” him through Growing Up With Cerebral Palsy in 1995, and I will be always be thankful for that introduction to one very remarkable, even extraordinary man.
The best tribute I can give to Mark E. Smith, outside of remembering him, is to help keep his message alive, because he embraced life with a vitality that created ceaseless inspiration. In my own words, I would say that Mark’s greatest statement was the contrast between:
“I live with a DISABILITY.” And,
“I LIVE, with a disability.”
And like the road less traveled, that makes all the difference.