CP stories offers presentations, webinars, and guest speakers, discussing cerebral palsy research, the Cerebral Palsy Research Network (CPRN) updates, life with cerebral palsy, caring for a loved one with cerebral palsy and access for you to join the interactive cerebral palsy community, with families, caregivers, adults, and medical professionals all in one place!

Dr. Amy Bailes with shoulder length hair, glasses, a brown jacket and salmon colored open collared shirt.

CP Stories: Dr. Amy Bailes Advances CP Care

Amy F. Bailes, PT PhD is the Director of Physical Therapy Research at the Cincinnati Children’s Hospital Medical Center and an Associate Professor in the University of Cincinnati’s Department of Rehabilitation, Exercise, & Nutrition Sciences. Her clinical work focuses primarily on the care of children with CP, while her research involves how physical therapy services are utilized, the use of measurement tools to treat CP, and novel CP interventions.

Dr. Bailes' eight grade photo shows her smiling broadly with a blue and black checkered shirt over a yellow turtle neck.

Dr. Bailes early exposure to young child with cerebral palsy while babysitting influenced her ultimate career choice.

Dr. Bailes has worked as a pediatric physical therapist for the better part of four decades, but it was during her teenage years that she was first exposed to CP. After agreeing to babysit for a neighborhood family whom she didn’t know well, she realized after a few evenings that the baby, a nine-month-old boy, seemed delayed. After bringing it up with the family, they confirmed her guess: the baby had severe CP due to an infection during pregnancy. The young Amy Bailes didn’t end up babysitting for the family for long, but the chance encounter led her to pursue a bachelor’s degree in physical therapy from Indiana University.
Dr. Bailes sitting on a rock in Sedona AZ with her husband and two daughters and a beautiful red and green landscape behind her.

Dr. Bailes decided early to combine her love of children, physical activity with her fascination with the brain.

“I became very interested in how the brain worked and controlled movement,” said Dr. Bailes. “I learned that as a physical therapist, I could combine my interest in the brain with my love for physical activity and children.”

Throughout her career, she has seen the field of physical therapy evolve dramatically, especially for children with CP: “We’ve learned so much about caring for children with CP. It’s really changed. And that’s been pretty exciting.” Within pediatrics, Dr. Bailes’ experience has been expansive. She has worked in acute inpatient care, inpatient rehabilitation, and outpatient care, as well.

Dr. Bailes is also quite interested in physical therapy dosing, which covers the frequency, intensity, duration, and timing of administering physical therapy to patients. A recent study that she co-authored in Pediatric Physical Therapy entitled, “Documenting Physical Therapy Dose for Individuals with Cerebral Palsy: A Quality Improvement Initiative” describes how quality improvement activities were used to increase documentation of therapy dose in the patient’s electronic record of physical therapy. Detailed dose documentation is important to help us understand what treatments are effective and for whom. Dr. Bailes is actively working to spread standard documentation methods to other medical centers so that vital information can be collated and used to inform current practice.

Dr. Bailes is also passionate about developing closer relationships between clinicians, patients with CP, and their families, about “sharing information with families that can empower them to care for their child,” in her words. Part of why transparency and information-sharing is important to Dr. Bailes is because the field has not always prioritized openness. When the Gross Motor Function Classification System (GMFCS) came into use, for example, it was common for clinicians to withhold a children’s classification from their family, on the basis that it might alarm them. This always struck Dr. Bailes as counterproductive: “It’s important—especially with a chronic condition like cerebral palsy—for the individual and the family to understand the condition. This information doesn’t really belong to us. It belongs to them.”

This is one of the reasons that Dr. Bailes initially became involved with the CP Research Network: “I like that CPRN is about breaking down barriers between researchers and families/individuals with CP to improve care and outcomes,” she said. Dr. Bailes is passionate not only about breaking down the barriers between professionals and families, but also between professionals in adjacent fields. The logic is straightforward: when specialists actively work together, everyone benefits. Strict separation between disciplines can be a problem in CP—information and context is inevitably lost as the patient bounces from one specialist to another—but Dr. Bailes is optimistic that things are moving in the right direction. Part of her optimism stems from the power of groups like the American Academy for Cerebral Palsy and Developmental Medicine and their willingness to collaborate and treat from an interdisciplinary perspective.

Dr. Amy Bailes with shoulder length brown hair, glasses smiling with a while shirt and blue jacket.

Dr. Bailes is the CP Research Network Quality Improvement coach work with different disciplines to rapidly improve care for people with CP.

Likewise with CPRN and its power to facilitate connections: “I have learned so much. I have become a better person, clinician, and researcher because of these relationships,” Dr. Bailes said. Currently, she coaches four quality improvement teams within CPRN. These four teams, respectively, are focused on:
  1. improving care for adults,
  2. improving the assessment of dystonia,
  3. improving hip surveillance, and
  4. decreasing intrathecal baclofen pump infections.

When asked what she most valued about her work, Dr. Bailes was already looking toward the future: “One of the most rewarding parts of my work is planting seeds for the next generation of researchers and clinicians to carry the work forward.”

CP Stories: Duncan Wyeth shown in a grey jacket with silver hair introducing Sheryl Hine.

CP Stories: For Paralympian Duncan Wyeth, It All Began with a Red Schwinn

A young Duncan Wyeth with curly hair, a dark blue suit and red tie speaking into a microphone.

Duncan on the Paralympic Committee and as an executive at United Cerebral Palsy.

If you subscribe to the idea that the baby boomer generation officially started in 1946, then Duncan Wyeth was truly one of the first—he was born in March of that year, just thirteen months after his father had come home from World War II, wounded during the Battle of Anzio. At a hefty 10 pounds 6 ounces, Duncan was by no means a preemie, as is common for people with cerebral palsy (CP(. But the birth itself was complicated, and the labor lasted for thirty-six hours. “It’s not surprising that I experienced a lack of oxygen,” Duncan joked, as we spoke over Zoom.

And so when baby Duncan started falling behind on common developmental milestones, this, too, was unsurprising. A few months after Duncan’s first birthday, his parents, Barbara and Irving, took him to a clinic in Detroit, roughly 100 miles from where they were living in Lansing, Michigan, where Duncan’s father was attending Michigan State on the G.I. Bill.

In addition to a formal diagnosis of CP, Irving and Barbara also received a sobering prognosis: they were told that he would never walk, would have an intellectual disability, and would probably be dead by forty. The doctors, in short, told them to place Duncan in an institution and go have another baby. “In 1947, that was not a cruel, uneducated prognosis,” Duncan said. While Duncan’s parents quickly came to terms with the diagnosis, they were, to their credit, skeptical of the prognosis the doctors had offered. This skepticism was arguably the first of several major decisions Barbara and Irving made well. In the words of Duncan: “I’ve always said that the most important lesson in life is ‘choose your parents well,’ and I had the foresight to do that.”

Cerebral Palsy was still poorly understood at the time—United Cerebral Palsy wouldn’t be founded until a couple years later, in 1949—but as Duncan neared school age, his parents were proactive in getting him the physical therapy and the pre-K social skills he needed. They also, crucially, allowed Duncan to be a kid, to take risks. “My parents not only allowed me to go outside my comfort zone, they encouraged it,” he said.

In kindergarten, they made another major decision that would pay dividends: they bought him a bicycle. At first, the bike served a pragmatic function. “I would never have been able to keep up with my playmates, go to the local playground, etc. if I hadn’t been given that bike. It really provided me with the mobility to get around.” Duncan needed training wheels, but he was unconcerned. The bike was, in his words, the “great equalizer.”

In second grade, though, Duncan received an upgrade: a beautiful bright red Schwinn with a small, battery-operated horn. That summer, he made sure the bike was well-loved: “I rode that thing constantly, everywhere. Whether I needed to or not.” At the time, summer was something of a double-edged sword for children with CP. It meant freedom, yes, but most children received their physical therapy primarily through the public school system which, of course, was on break in the summer. If a child wasn’t receiving private physical therapy, then summer usually meant a step backward. Some of the progress made during the school year would inevitably be lost.

But when Duncan returned to school in the fall of third grade, his doctor was confused. “Duncan isn’t up on his toes as much when he’s walking,” the doctor said to Duncan’s mother. “You’ve found some way for him to have physical therapy in the summer, I’m guessing?”

“Well, no, I wonder what’s different,” said Barbara. “This spring he got a new bicycle, but that’s the only thing I can think of.”

Unlike most children with CP, Duncan’s condition had actually improved over the summer—he was notably less spastic, ostensibly because of all the exercise he had been getting on his bike. This Schwinn would mark the beginning of a lifelong love: “The cycling was physical therapy, but it wasn’t physical therapy that required a licensed therapist or insurance coverage. And I liked it. I was doing something.”

Duncan’s parents gave him the Schwinn for the same reason any parent would do so, but it’s hard to overestimate how radical the decision was at the time. Measured, supervised physical therapy was slowly becoming a part of any CP regimen, but common exercise—working up a sweat while riding a bike up the nearby hill, say—was thought to be harmful to the overall health of a person with CP. “Exercise was contraindicated, because the belief was the stress would exacerbate my spasticity,” Duncan explained. In this regard, Duncan’s parents were almost a half-century ahead of the research.

Duncan Wyeth sits on a sand beach facing lake Superior in a blue USA jacket with his bicycle.

From second grade on, cycling has been a key part of Duncan’s life even at 76 years of age.

To say that cycling became a hobby for Duncan would be an understatement. He would continue to cycle in high school—roaming through the streets of Taipei, where he lived for two years while his dad taught at National Taiwan University—and then through his university years as well, first at Alma College and then at Michigan State, just like his father. In his twenties, Duncan joined a touring bike club, participating in weekly rides, including century rides. Not until his thirties did he begin to seriously compete in disability sports, receiving one gold medal and two silver medals in the National Cerebral Palsy games. A few years later, he would compete internationally—first at the international Cerebral Palsy Games, where he was the first American to receive a cycling medal. At the 1988 Paralympic Games in Seoul, he placed fifth out of more than forty competitors. This marked the beginning of his work with the Paralympics, which lasted several decades: in ‘92 in Barcelona he served as a cycling coach and member of the leadership team, and then at the Atlanta Paralympics in ’96 as the prestigious “chef de mission” for the U.S. Paralympics team.

During this time, he also served as the voting representative for athletes with disabilities on the United States Olympic Committee for two Olympic cycles of four years each. In ’97, he was elected to the International Paralympic Committee (IPC) and would later become the vice president. In 2000, the American Academy for Cerebral Palsy and Developmental Medicine established the Duncan Wyeth Award, which annually recognizes an individual who has made significant contributions to sport and recreation for persons with disabilities. While Duncan stopped competing around this time, he still cycles on a regular basis. “I am convinced that at age seventy-six, I am still as mobile and as active as I am in large part because of a physically active, sporting lifestyle.”

Duncan Wyeth in a bright red USA check and blue helmet sits in his recumbent trike smiling.

Duncan Wyeth has not only been the recipient of several awards and medals, he also has had an award named after him by the American Academy for Cerebral Palsy and Developmental Medicine.

Duncan is retired now, or as he likes to call it, “unemployed by choice.” But he has chosen to stay involved with the CP and disability community more broadly for many reasons. To understand one such reason, we need to briefly return to Duncan’s eighth-grade English class. His teacher, Mr. Porter, was a friendly, charismatic man who had become disabled after contracting polio as a child. “Mr. Porter was the first professional disabled adult I’d ever encountered, and therefore my first significant role model,” Duncan said. His teacher was proof that it was possible for a person with disabilities to have a fulfilling, ambitious professional life. For many young people with disabilities, they either never meet that adult role model or do so too late. Throughout his adult life, Duncan has taught and presented at schools with abled and disabled students alike in the hopes that he might serve as an example of what is possible. These exchanges need not be particularly complex: it is enough, in Duncan’s words, to enable a young disabled student to realize, “I can do that.”

He has also chosen to stay involved with organizations like United Cerebral Palsy (UCP) and the Cerebral Palsy Research Network (CPRN) to ensure that others have access to sorely needed resources and support systems. The types of resources that CPRN offers are largely in-step with the research, but Duncan particularly appreciates that they reflect what people with CP actually want. “One of the reasons I’ve been impressed by CPRN is their real desire to listen to the consumer voice and input so that programs and services are consumer-focused,” he said. To this end, Duncan also appreciates the close relationship between the community and its members: “There’s always research going on, all kinds of surveys that people with CP can participate in. They can contribute to a knowledge base that’s really going to move the needle.”

Duncan has done a fair amount of moving the needle himself, consistently pushing his limits and defying expectations. But he was resolute that his accomplishments wouldn’t have been possible without the support he’s received: empowering, passionate parents; the opportunity to pursue a college education; the chance to travel the world and represent his country; years of engagement in meaningful employment. “I am where I am today because of all the steppingstones I’ve had along the way,” he said. “The economic security, rich and varied learning opportunities, wise and caring mentors, and a personal commitment to progress. If I hadn’t acquired over the years the skillset needed to navigate an unfriendly system, there’s no way in hell I’d be who I am in 2022.”

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

CP Stories: Edward A. Hurvitz, MD

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

Dr. Ed Hurvitz is a member of the CP Research Network Steering Committee and the chair of the network Adult Study Group.

Dr. Edward A. Hurvitz is Chair of the Department of Physical Medicine and Rehabilitation (PM&R) at the University of Michigan Medical School. He is a physiatrist by training, specializing in pediatric rehabilitation medicine. But as the children he worked with grew up, he became increasingly focused on adults with childhood-onset disabilities, particularly cerebral palsy (CP). This shift was based largely on the needs of his patients: “For my adult population, the most motivating factor is the great need for someone who has knowledge and interest in their care,” said Dr. Hurvitz. The CP-related research he has been involved with is expansive: over the years, the Michigan Adults with Pediatric Onset Disability team has published research on pain and pain treatment, bone health, renal disease, mental health, cardiovascular health, body composition, and the diagnosis of these chronic diseases.

Although Dr. Hurvitz has remained active as a researcher throughout a career spanning more than three decades, he has also served as a sort of advocate, working to get a younger generation of doctors and researchers interested in CP. He mentioned that the CP Research Network has been helpful in this regard: “[Working with the CP Research Network] has given me the chance to interact with young faculty and try to bring them in more to the world of CP research, along with giving them the tools to do it,” Dr. Hurvitz explained.

The rationale here is that if there is growth in the amount of researchers dedicated to CP, funding devoted to CP will likewise increase. Ideally, Dr. Hurvitz explained, all major medical centers that train early-career researchers would have CP-related programs. If the National Institutes of Health and other grantmaking agencies were, in Dr. Hurvitz’s words, “flooded with high quality grants related to CP,” research would increase exponentially. Specific areas that Dr. Hurvitz would like to see an increased focus on include research that engages with the International Classification of Functioning (ICF), which would entail finding interventions to improve overall health for people with CP and developing ways to increase their participation in vocational and recreational activities.

Likewise, because so many people with CP depend on their primary care physicians to correctly diagnose secondary health issues and make the appropriate referrals, Hurvitz also sees increased focus on education about CP as a vital step. “I would do more to teach primary care physicians about what we are learning about preventive care for people with cerebral palsy,” said Dr. Hurvitz. As telemedicine continues to grow, Dr. Hurvitz is optimistic about its potential to connect people with CP to specialists all over the country: “Telemedicine has great potential to allow health care providers knowledgeable about adults with CP to provide care and partner with providers in the individual’s local area. CPRN is working on a project to better identify these needs and provide education to people with CP about the importance of finding a knowledgeable provider,” In this same vein, he also considers it important to provide individuals with CP and their families with the tools to navigate health care and social service systems that are often ill-equipped to handle their needs.

Sorely needed investment in public infrastructure—increases in the frequency and reliability of public transportation, self-driving vehicles, and personal robotics aid devices, for example—also stands to benefit adults with CP. Additionally, investments in technology—voice-activated software, communication devices, and learning platforms tailored to children with learning disabilities—will also likely improve the day-to-day lives of people with CP.

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Dr. Hurvitz continues to cover a wide range of CP-related health issues in his clinical research. He’s currently leading a project that would introduce handgrip strength as a measure of risk for chronic disease, and the Michigan team is also actively looking into better ways to assess the risk of fractures and renal disease (and screen for them, as well). Research aside, Dr. Hurvitz remains an active and passionate clinician. “One of the things I find in talking to adults with CP is that they just greatly appreciate the information, and they really feel like so few people are able to provide it.” Public knowledge is still catching up to the recent uptick in research, and so Dr. Hurvitz sees information dissemination and the growth of the CP health care provider/researcher community as a crucial factor in getting people with CP the treatment they need.

There is, of course, no magic treatment for CP, but Dr. Hurvitz’s outlook remains optimistic because of how the CP community and CP infrastructure have grown in recent years. “CPRN provides the tools to improve care, increase clinical research at significantly reduced cost (once the infrastructure is in place), improve clinical education…and more,” Dr. Hurvitz said.

Much of the research that Dr. Hurvitz and his peers have produced in recent years does suggest that CP is treatable, that physical interventions can dramatically increase quality of life and decrease the severity and frequency of secondary health issues. This is another reason for Dr. Hurvitz’s optimism. Recounting a patient whose life improved after being treated for a secondary health issue that was plaguing her, Dr. Hurvitz said, “I like to say that I can cure cerebral palsy—a little bit at a time. I can’t cure all of it, but I can cure some of it.” He feels that the more we know about CP, the more we can cure. The CP Research Network will continue to play a vital role in continued efforts to better understand CP.

A middle aged woman with spastic quadriplegia smiles with blue eyes, strawberry blond hair and a black sweater.

CP Stories: Susan Picerno

Susan Picerno, a woman in her middle age with spastic quadriplegia, has led a few different professional lives. She has thrived in all of them. But the beginning of her career entailed the hiccups that driven, ambitious people with cerebral palsy come to expect. After graduating summa cum laude with a bachelor’s degree in social work, she decided to continue onto graduate school, obtaining a master’s in social work from the prestigious University of Michigan. Despite a graduate degree from what was the best social work program in the country, Susan recalls interviewing for twenty-two different positions before receiving an offer. For one interview, Susan recalled walking in with her crutches and being met with incredulity: “The director was so flabbergasted that I was disabled that he just stared at me, speechless. He had two directors with him, and they had to conduct the interview. He didn’t say a word the entire time,” said Susan.
She finally landed a part-time role with United Cerebral Palsy in Buffalo, New York, volunteering at a nearby center for independent living at the same time. From her volunteering, she became a board member, then an employee, and eventually, Director of Services. This was in the late ‘80s, not long before the passage of the Americans with Disabilities Act of 1990. The independent living movement was still relatively new at the time, and so Susan felt like her and colleagues at other, nearby centers for independent living were part of a movement that was growing and changing in real-time.

After her time at the center for independent living, Susan transitioned back into social work management for a while, pivoting again into grant writing for a time. At age 41, she shifted again, this time moving to D.C. to dedicate herself exclusively to federal disability policy. Susan had been working on disability issues for most of her career, but tackling the problem head-on at the federal level felt both meaningful and fulfilling.

But as Susan continued to advance and take on new challenges in her professional life, she could feel her spastic quadriplegia getting the best of her. She started developing secondary health issues common for people with cerebral palsy: obesity, type II diabetes, and hypertension. “I tried to exercise but I found physical therapy to be unsupportive,” Susan said. “I was supposed to exercise at home on my own, without the ability to stretch my own muscles and no adaptive exercise equipment or support from other people with disabilities. Why do physical therapists think that this situation will result in success?”

This is to say that for people with cerebral palsy who want to develop an exercise routine, the barriers to entry can be quite high. Pair these logistical difficulties with her harrowing experiences as a child in physical therapy—she describes being worked so hard by her abusive physical therapist that her lungs collapsed multiple times—and it’s clear that developing a regimen can present not only physical difficulties, but emotional ones. “Looking back [at my time in PT], I wonder: couldn’t they have put me in elbow pads, kneepads, etc. so that I didn’t injure myself?”

Despite these early experiences, Susan realized she was at a crossroads. Knowing what needed to be done but not sure how to make it work, Susan turned to the Lakeshore Foundation’s MENTOR program, which she was introduced to through her participation in the CP Research Network. The MENTOR program, which the CP Research Network is responsible for promoting to the CP community, helps develop wellness activities that participants can practice at home. Susan had a rocky start to the program—it was hard not to be discouraged about exercise, given her past with it—but eventually, the program became less about past struggles and more about self-improvement. Likewise, the ability to connect with other CP Research Network members who’d faced similar challenges was immensely rewarding. “These folks will always be my friends,” said Susan. She has since gone on to participate in another activity organized by the MENTOR creators, called the M2M study, which was a free exercise program tailored to people with disabilities.

Exercise was once a source of anxiety and disappointment for Susan, but now it’s a central part of her life. She consistently works out through her local adaptive fitness program, DPI Adaptive Fitness, which offers both in-person and virtual programming. One of the joys of virtual programming is the ability to participate in workout sessions that are “based” anywhere: one of Susan’s favorites is through the Bay Area Outreach and Recreation Program (BORP), which is based in San Francisco. “I work out about six hours a week now, and that includes boxing class, weight training, cardio. All kinds of activities.”

Susan recently retired from nearly two decades of service for the federal government, almost all of which were spent working for the U.S. Department of Labor’s Office of Disability Employment Policy. But in more ways than one, she continues to work to advance the causes of people with cerebral palsy. Advances in the fields of genetics and neurology represent possible breakthroughs for disability communities, but if used unwisely, these same technologies could greatly reduce the diverse ways in which human brains function (also known as “neurodiversity”). Thanks in part to the connections she has made through the CP Research Network, Susan has continued to organize and educate about this topic, engaging with both activists and scientists alike: “As people with cerebral palsy, we need to step forward and speak decisively for our own community,” Susan said. “And we need to educate parents, medical professionals, and the general public about our disabilities.” Likewise, she also recently started Little Tiger Productions, a platform that seeks to amplify creative work by and about people with disabilities. “There are so few stories that are written with disabled people in mind. Characters that do have disabilities often exist to make a point,” she said. Tiger Talk, a Substack newsletter dedicated to just this topic, is set to publish soon.

CP Stories: Alexander and Lisa Diller

A young man with cerebral palsy dressed in a scouting outfit and smiling hugs his mother in a black sweater and striped shirt.

Alexander Diller, a young man with CP from his premature birth, hugs his mother Lisa, during a scouting event.

Like so many others with cerebral palsy (CP), Alexander was born premature, at 27.5 weeks. While on an oscillating ventilator, the endotracheal tube scraped the back of his throat, triggering a bilateral pulmonary hemorrhage. In turn, the hemorrhage caused intraventricular bleeding, which resulted in hydrocephalus. It would be nine weeks before Alexander was discharged.

During his nine-week stay at the hospital, Alexander’s parents—Lisa and Tim—began their advocacy, working alongside a neonatologist to ensure that Alexander had regular skin-to-skin contact. While this practice is common today, it was rare twenty years ago. Because pediatric neurologists often prefer to wait before making the diagnosis, Alexander would be three before he was formally diagnosed with CP. But as a physical therapist with advanced neurologic training, Lisa suspected it from early on: the month Alexander arrived home, Lisa said, he “began to show signs of lower extremity spasticity and other movement patterns characteristic of spastic diplegia.”

Growing up, Alexander has faced the kind of ableist pushback that young people with CP and their parents have come to expect. As Lisa and Tim prepared him for kindergarten, they settled upon a private school that they thought was best equipped to meet his needs. The school initially expressed reservations about their ability to accommodate Alexander, but after Lisa, Tim, and Alexander’s preschool teacher, Pat, assured the school that Alexander’s needs were as simple as finding a chair that allowed his feet to touch the floor, he was accepted. Later, in high school, Alexander would compete in impromptu and extemporaneous speaking, only to be docked points for his “walking style.” Some judges even went as far as commenting that he should “fix it.”

Alexander has taken these challenges in stride: he was talkative and outgoing from an early age. He has maintained an active, fulfilling extracurricular life in high school, consistently qualifying for impromptu and extemporaneous speaking tournaments[1] at both the state and national levels despite insensitive comments from judges. But the transition into high school did present its own challenges. “We had an influx of new freshmen that I met for the first time,” Alexander said. “I also had new teachers. A lot of it was explaining my CP or answering their questions.”

There were, too, the stares and the speculation from students Alexander didn’t know personally. They wondered whether his CP implied an intellectual disability, something that folks with physical disabilities often must contend with. “Sometimes there were assumptions that because I had CP I wouldn’t be capable academically,” Alexander said. Working with a psychologist who also has CP guided Alexander through the transition. Hearing from someone who had faced similar challenges helped Alexander develop strategies to better understand his own feelings.

Adults with CP have served as valuable mentors for Alexander. During his time with Boy Scouts—he recently attained the rank of Eagle Scout with a silver palm in 2021—Alexander met Steve, a Scoutmaster who also happened to have CP. Alexander has relished the physical challenges that scouting entails. During the same summer he met Steve, Alexander successfully completed a 50-mile hike over a 12-day period with his troop at Philmont Scout Ranch in Cimmaron, New Mexico. Later that summer, he then completed a 50-mile bike ride in seven hours on the Olympic Peninsula.

Scouting aside, Alexander is also an avid Aikido enthusiast and will be testing for his first-degree blackbelt in March. Lisa and Tim made it a point to foster Alexander’s interests from an early age. Some of this was pragmatic: This passion has helped Alexander physically, particularly with his strength, balance, and coordination skills. But it has also helped him develop a strong sense of independence. “Aikido has allowed Alexander to practice with his peers and teach younger students,” said Lisa.

The parents of children with CP inevitably become experts as the child ages, but Lisa’s background in physical therapy has also informed her approach to Alexander’s CP. “I feel my educational background, connections to my peers, and access to current research has enabled me to make educated and informed decisions about Alexander’s care and advocate for him when needed,” said Lisa. “It has also enabled me to teach Alexander from an early age how to advocate for himself.”

As Alexander transitions into adulthood, his independence will undoubtedly prove useful. He recently turned eighteen, starting to cross “the unsteady bridge from pediatric to adult care,” as Lisa called it, that both researchers and advocates alike realize is a critical time. As an educator and provider of adult neurological interventions herself, Lisa has made it a point to stay informed about current research so that she can help guide Alexander during the transition.

Now that Alexander is eighteen, he has started taking the CPRN registry surveys with the hope of contributing to the improvement of treatment interventions for individuals with CP. He graduates from high school in June 2022, and either D.C. or the Northeast seem like the most likely landing spots for college. He will study international relations and global health, ideally with an emphasis on East Asia (he has been learning Mandarin since he was six). “I’d like to involve myself in diplomacy and create policy that’s based on the needs of a community,” said Alexander. What he ends up doing, of course, will be up to him. But it’s abundantly clear that Alexander’s future is bright.


[1]An impromptu speech tournament requires participants to prepare a speech on an unplanned topic in just a few minutes.

A grey page banner with a photo of Heather Hancock, a smiling woman with long brown hair wearing a red sweater and glasses.

CP Stories: Heather Hancock Defies the Odds

How Heather Went from Survival to Pioneer for Change

From the moment she was born prematurely, CPRN advocate Heather Hancock was battling to survive. Today she reveals how she is still fighting for adequate care for adults with cerebral palsy.
Heather Hancock, pictured with long brown hair and red shirt, wire rimmed glasses with a book case behind her is an editor

Heather Hancock is a writer and an editor as well as an advocate for cerebral research and care for adults.

When Heather Hancock was born more than three months prematurely – at 25 weeks gestation – doctors warned she would struggle to survive the first 24 hours of life.

But Heather defied the odds. After three months in an incubator, the tiny baby was well enough to be taken home. That was the first day her mother, Edna, was allowed to pick up her baby and hug her.

As a toddler growing up in Calgary, Alberta, Canada, Heather was slow to crawl and meet her physical development milestones. Meanwhile, her younger brother, Colin, born 13 months after her, was advancing rapidly.

Her family faced a fight to enroll her at the local school.

“Back then, disabled children were shunted away to special schools out of the public eye,” she says. “I was integrated into the public school system, which was great for my education but not good for my social life. Kids did not accept me very well, and neither did their parents, so I endured incessant bullying from kindergarten through to grade 12.”

The bullying took its toll on Heather. By the age of 14, she was having suicidal thoughts but fought through them, crediting her faith for continually bringing her comfort and purpose during dark times.

As an adult, Heather was keen to pursue a career as a registered nurse but faced more hurdles. Halfway through her training program, she began to experience pain in her knees. Being on her feet for hours on end and the job’s physical nature was too much for her. Mustering her characteristic grit, Heather went back to college to get an office administration certificate. She was determined to work in healthcare and took up a position as a unit clerk in an outpatient clinic.

However, after a 22-year career, Heather began to experience painful lower back spasms. The pain made it impossible for her to walk for several hours each day, and she took medical retirement at 44.

“It seemed like nobody could tell me what was going on,” she recalls of that time. “In Canada, there is no doctor that specializes in adults with cerebral palsy. It feels like you are just cut loose when you are 18 and told to “have a good life!”

Although she underwent rehabilitation and saw physiatrists who work with spasticity and stroke patients, she noticed a stark difference from the care she’d received as a child.

“It can get harder to find a team of doctors as you get older,” she explains. “Today children with cerebral palsy are sometimes treated by a multidisciplinary healthcare team. It would be great if adults had the same access to help, equipment, and physical therapy. Finding the right team of doctors is crucial so that everyone can put their heads together and come up with a plan.”

Professionally, Heather pivoted to other talents. She forged a new career as a professional coach providing inner healing for women suffering from trauma and abuse. Then, in March 2019, Heather began working as a contributing writer penning fiction and poetry for CoffeeHouseWriters.com. She became an editor in June 2020. Working to her own schedule helps manage her pain.

“When you are your own boss you can schedule things for times that work better for you,” says Heather, who now writes from home in Maple Creek, Saskatchewan, Canada.

Meanwhile, Heather continues to advocate for the Cerebral Palsy community. She relentlessly contributes to research and discussions on the CP Research Network’s MyCP community forum to ensure that the “absence of knowledge and care for the adult CP community” is addressed. She is also pushing for change with her local cerebral palsy association in Saskatchewan and national and international groups.

“I’ve been a pioneer since I was old enough to walk,” she smiles. “I may not see the benefit in my lifetime, but the younger generations will.”

Thank you Heather for sharing your inspiring story!

Marquis Lane, a smiling young man seated on a walker, wearing a Georgia sweatshirt with four friends behind him at a stadium.

CP Stories: Marquise Lane

Marquise Lane, with a beaming smile and glasses sits listening to music in his college dorm with a navy football sweatshirt

Marquise is always smiling ear to ear — here while listening to music in his dorm room.

It’s a daily decision to keep fighting and believing in yourself.
Marquise Lane
Client Success Specialist

For Marquise Lane, succeeding at college wasn’t just a matter of working hard and pushing himself academically. Conquering his CP mobility hurdles and achieving independence were also vital.

When Marquise Lane graduated from UGA in 2016 with a BA in Management Information Systems (MIS) the moment was extra special to him.

As a young person with cerebral palsy, Marquise hadn’t just put in the hours of study needed to gain his degree, he’d also worked tirelessly to overcome the physical hurdles holding him back from his college dreams.

In high school, Marquise got up very early to make sure he dressed himself – here in khakis and a grey argyle sweater.

Marquise was determined to be independent from an early age so he made sure he got up early to have time to dress himself.

“I always wanted to go to college,” says Marquise, 27, who lives in Valdosta, GA. “But it wasn’t the mental things like the schoolwork that were in the way, it was more of the physical things like dressing and putting shoes on.”

Armed with a positive mental attitude, Marquise took on the challenge with gusto. Throughout his 12th grade, he got up extra early in order to practice mastering the independent skills he needed to succeed.

“I had to leave the house at 7 am so I’d get up at 5.30 am to give myself that extra time to dress and put my shoes on by myself – just to practice,” he recalls. “For a while I needed help but I got to the point where I was independent enough. Eventually, my mom agreed I was ready to go to college.”

Marquise was diagnosed with Spastic Diplegia cerebral palsy at the age of three and says he grew up fully understanding what having CP meant.

A young Marquise, in a white t-shirt, demonstrates his domestic skills by ironing a pair of his dark slacks

A young Marquise Lane takes up ironing his own slacks to help out around the house.

As a young boy, Marquise wanted to do the same activities as other kids his age but also knew his circumstances were different

At seven years old, Marquise wanted to do all the activities his peers did including baseball!

“My mom’s always been big on talking to me like an adult so from three I knew what I had,” he says. “I don’t really like the word “different” because I do feel like I’m a normal person, I just have a different set of circumstances I have to deal with. As a younger kid I looked at other kids and saw them do things like swing on the monkey bars and then play football and sport. I wanted to do that too, but it was hard because I couldn’t. You have to fight that feeling of “I’m not good enough” or “I’m weird.” Every day you have to wake up and focus on the small victories and the positive things you’ve done. That provides momentum to keep going forward.”

At UGA, Marquise lived alone on campus in an accessible room and says he is grateful for the friends he made who would always lend a helping hand with things like Walmart and barbershop runs. His challenges on campus ranged from navigating the hills in Athens, GA, to working out how to get from A to B. From the start, the college paired him with a disability coordinator tasked with ensuring all his classes were accessible and that he had all the help and resources he needed.

“UGA went out of its way to make sure I could get to where I needed to be,” he says. “I had all the tools I needed to succeed academically and UGA provided a van service that took me from class to class and just about anywhere else on campus I needed to go.

Marquise Lane sits down on his aluminum walker smiling with a wrought iron arch and a building with white pillars behind him

Marquise Lane sits on his walker smiling while on his college campus

“There were several occasions where an entire 300-person class was moved because the original building wasn’t accessible for me and I had letters to share with professors so they were aware of any special assistance I needed.”

Regardless, it took stamina and endurance for Marquise to keep pushing toward his academic goals.

“It was tough at times,” he says. “When you look around you see that most people don’t have to work as hard as you do to accomplish basic tasks. They don’t have to worry about accessibility and how far away things are. I learned to focus on myself and limit comparisons.”

Marquise Lane, in a red sweatshirt at a job fair, sits holding a large white sign with the words “Hire Me” in red

Marquise was not shy in pursuing work out of college.

He cites graduating from college as the culmination of belief in himself and hard work. “It showed me and my family that I could do anything I put my mind to,” he says.

Since graduating in May 2016, Marquise has worked as a client success specialist for ProcessPlan. His goal now is to continue living independently and advance his career.

“There isn’t some magical point where you have things figured out and that’s it,” he says. “Having a vision for the things you want to accomplish in life helps. Once you have a vision, you can break that down into actionable steps and go forward. It’s a daily decision to keep fighting and believing in yourself.”

Four smiling women stand outdoors on a sunny day behind the UP Academy sign with their arms folded and resting on top.

CP Stories: Tanya Sheckley and UP Academy

Meet the CP mom who overcame her grief to build an incredible inclusive school in her daughter’s memory

Everyone needs a place to belong. Inclusivity is life.
Tanya Sheckley
Mom, Inclusive School Creator

Tanya Sheckley’s vision of creating an inclusive school empowering ALL children was almost shattered with the untimely death of her beloved daughter Eliza. Yet, the resilient mother channeled her grief into creating a school to embody everything Eliza taught her about ableism, education, and empathy.

Like many CP parents, Tanya Sheckley worked hard to research education options for her daughter Eliza, who was born with spastic quadriplegia cerebral palsy.

As her daughter’s kindergarten years approached, Tanya, who lives in Mountain View, California, was dismayed to learn that many schools provided the bare minimum when it came to educating children with disabilities.

Tanya Sheckley in a red blouse smiles at her daughter Eliza who is wearing a magenta taffeta party dress with red flowers in the neckline.

Tanya Sheckley with her daughter Eliza.

Eventually, Tanya found a parent participation school that was great for Eliza, who was unable to walk or talk due to her cerebral palsy. Her daughter’s new kindergarten teacher had experience in special education and Tanya was happy to see Eliza thrive.

“She learned to read, do math, and was curious about science,” recalls Tanya. “Kids didn’t see her as ‘different.’ She fit in, she was happy and became one of the most popular kids at school. She did well academically with accommodation for the way she learned. We had gotten lucky.”

By first grade, things were changing. Despite Eliza’s stellar kindergarten record, Tanya and her husband Chris were frustrated by the recommendation to put their bright and inquisitive daughter into a modified curriculum for children with different abilities. The one-size-fits-all model meant the work would be made easier, and Eliza would not be expected to learn the same material as her able-bodied classmates.

Under the Individuals With Disabilities Education Act (IDEA), public schools are required to provide access to education. Unfortunately, in a system built to educate the masses, children who are “different” often aren’t encouraged to excel in the same way as their peers.

“It felt like a barrier to providing real opportunity,” says Tanya. “Just because a student doesn’t have an effective and consistent method of expressing knowledge doesn’t mean the student doesn’t possess the knowledge. All students should be challenged in areas of strengths and supported in areas of weakness so they leave school with the knowledge and skills to be successful and independent in the world.”

Tanya, who had previously worked in business and taught as a yoga and ski instructor, became frustrated that no one school could support Eliza and her younger siblings Breda and Keller in their individual strengths. Why couldn’t there be an inclusive elementary school set up for all children to thrive?

In 2015, she decided to create an inclusive school for kids with disabilities and their able-bodied siblings.

Kids work on painting and decorating a wall at the new UP Academy.

Students decorate the wall at UP Academy.

The determined mother sought funding, secured a lease, raised awareness, and reached out to her community to recruit and admit kids who would benefit from everything the school would have to offer. The new school, UP Academy, gained 501c3 status in December 2015.

Then the unthinkable happened. Eliza passed away in her sleep in March of 2016.

“It was completely unexpected,” says Tanya. “Eliza was fine and was having fun but one Friday she came home from school early because she was tired and not feeling well. I laid her down for a nap and told her I loved her. Our nanny was there to care for all three of our children so I went to the grocery store.

“When I checked on Eliza later she wasn’t breathing and her lips were blue. We did CPR until help arrived and Eliza was transported to the hospital where they did all they could. But there was nothing more the doctors could do. Walking out and leaving her behind was one of the hardest things I’ve done in my life.”

Despite her grief, Tanya could not give up on the school.

“I needed to find a way for the grief to serve me,” she says. “My family needed me to still be a mother and wife, and Eliza had taught me about ableism, education, and empathy. I had learned too much to walk away. I could lay in bed all day or use what I have learned to help others. There were still many families of children with disabilities who couldn’t find a fit for their children in the education system. To honor Eliza and to help them, I needed to work to create change.”

For the next two years, Tanya continued to build the school and welcomed her first group of students in 2018. There were plenty of challenges. The school’s first building lease fell through but Tanya persuaded a local church to let her use their rooms for a time. Eventually another location was found and the school has had a permanent home in San Mateo for the past three years.

With 20 students enrolled in UP Academy, Tanya is considering opening another location next year in the San Francisco Bay area. It is her vision to encourage other parents and educators to launch their own schools with a course she created, the Rebel Educator Accelerator.

“When we all work together, we can be more creative and achieve more,” she says. “Our vision for UP Academy is to build a method of education that can be shared and replicated. By teaching, training and sharing our curriculum with other schools we can serve more students in new and innovative ways.”

There is not a day that passes without Tanya thinking about her daughter who continues to inspire her.

“Eliza was sweet and kind,” she says. “She loved people and spending time with her friends. She was stubborn and wanted things to be done her way. She made decisions quickly and stood by them. We still have a dish we call Eliza Guacamole, which is smashed avocado and banana.

“It’s important to remember that despite any disability, all kids want to play, learn and make friends. Everyone needs a place to belong. Inclusivity is life, it is love, it is understanding and empathy, it is the thing that allows us to learn and work and play together.”

[ends]

Four laughing young adults in a line; two young men in the middle with two young women on either side of them pose for a photo.

Preparing for College – Part 3

Carol Shrader, mother of four, two of whom have cerebral palsy.

In the third installment of her inspiring story, CP and triplet mom Carol Shrader shares how she watched her son Benjamin, who has spastic quadriplegia, flourish during his college years…

The night before my son Benjamin began his freshman year, I could not sleep. I worried all night long.

“I know, right?” my husband Wade consoled, observing my nervous disposition. “I have been thinking about this day for 18 years!”

Benjamin, our triplet with spastic quadriplegia, lived at home with us and his younger sister Cate for the first three years of college, but getting around campus independently was still a big deal.

He was only a week and a half into the first semester when we hit our first snag. Benjamin was heading across campus in his wheelchair with a fellow student and following her lead. When she pointed at the curb where they needed to cross the street and asked him if he could make it, he assumed it was flat. Unfortunately, his depth-perception issues prevented him from knowing for sure. It wasn’t flat. He drove right off the curb.

His professor called me, and I rushed to the campus to find my shaken son, clearly in pain and surrounded by college kids, security, and the head of the theatre department. The footplates on his wheelchair were the only thing that prevented him from landing on his face. His feet still took the brunt of the 300-pound weight of him and his wheelchair.

I have never wanted to jerk back control of a situation more – and it was clear I needed to.

Quickly rearranging my schedule, I ensured I could be on campus the rest of the school year. I assisted between classes, shuttling Benjamin between the upper campus and the lower campus where theatre classes were held. I brought him lunch. I took care of his toileting needs. I brought him back to campus for late night events and drove him wherever he needed to go, ensuring he could fulfill his college kid schedule.

At the same time, I worked to find ways to help him achieve independence. I began by phoning the ADA compliance officer and asking for the sidewalks to be revamped on campus. They needed ramps so Benjamin could navigate them safely. When the ramps were consistently blocked by mail delivery vehicles, maintenance, and even professors, I called the dean.

With problems still arising, I called the university president and, in my sweetest Mama Bear voice, told him that Benjamin could not succeed at his college if he could not ever get into the classrooms. A few weeks later, every ramp on campus had been repainted with the words “DO NOT BLOCK” in bold letters.

Meanwhile, Benjamin worked with the ADA office to secure a scribe for tests. The professors assigned a student to copy their notes for him. I was his scribe at home for each assignment. We even burned the midnight oil together, working on a 24-hour theatre assignment to write a play overnight so his team could memorize lines and perform them the next day. Poor Benjamin had to dictate to a scribe who fell asleep between lines.

The triplet’s freshman year continued to be a long year of learning for all of us. Mason was doing well, living a relatively independent life on campus at his college. Claire, my triplet without cerebral palsy, had moved onto campus about half an hour from our home. Throughout her four years, she called, texted, and sent video messages. Sometimes she would share a funny story about life on campus; sometimes, she just needed her mom and emotional support.

When April arrived, I noticed a shift in Benjamin. During a course selection meeting with his advisor, he took an assertive new tone.

“I need to arrange my schedule so that I am at the upper campus for three days a week and the theatre campus for two days a week or vice versa,” he said. “I need for my mom to be able to leave me on campus.”

By the time Benjamin began his sophomore year, he had a personal care team trained to assist him. Having a personal care attendant meant he could be independent of me and could organize his study time, extra-curricular activities, and classes the way he wanted. By his senior year, Benjamin felt confident to move into a newly built dorm with accessible units. It was an enormous step.

Initially, Benjamin didn’t love staying in the dorm, but he grew to enjoy his independence. It was empowering for him to be in charge of his schedule, meals, and life. The accessible dorm and the ultimate willingness of the college administration gave him this opportunity. He had a great college experience participating in theatrical productions as both an actor and a dramaturg and was elected to homecoming court twice in four years.

Benjamin Shrader in his second round of being elected to the Homecoming chord.

Benjamin Shrader at a college graduation celebration.

Benjamin graduated Magna Cum Laude with a major in dramatic writing and a minor in political science. When he presented his final script as a read-through performance for his senior project, every single one of his team of PCAs was in the audience because they were so invested in him.

His brother Mason was recently accepted to his second Master’s program in Anthropology, focusing on Bio Archaeology at Texas Tech. Claire is currently in her second semester of Occupational Therapy School at Thomas Jefferson University in Philadelphia.

Claire enjoyed a semester studying abroad in Argentina and founded sibling workshops for the brothers and sisters of differently-abled children worldwide. When she got an internship with an autism foundation, she discovered they had nothing for siblings, so she created a program. She went on to graduate Magna Cum Laude with a major in Spanish, a minor in English, and all her pre-occupational therapy courses.

When I reflect on the triplets’ journey, I would like to call the educators who didn’t want to invest in their potential. I want them to know that those little preschoolers they thought would place an undue burden on their teachers graduated with honors – lots and lots of honors.

I would like to tell them that when Benjamin rolled across the stage with his diploma, the faculty were the first to stand in what turned into a standing ovation throughout the graduation hall. Those faculty did not stand because Benjamin had been a burden on their teaching. They stood because he worked hard in their classes, he engaged on a day-to-day basis, he encouraged his fellow students, and set the bar high for their performance.

I would like to show them photos of Mason digging in the ancient acropolis in Majorca and receiving his hood for his thesis. I want them to read his undergraduate thesis on disability in the ancient world. I want them to know that his honors project won the Phi Beta Kappa award for best honors project at his school. They missed the chance to list this amazing Summa Cum Laude graduate and all of his accolades among their alumni.

The Shrader children -- triplets to the right with sister Cate on the left.

The Shrader children — triplets to the right with sister Cate on the left.

They also don’t get to brag about our soon-to-be Occupational Therapist Claire who is already changing the world for young people with CP and their families.

College looked different for each of my three. But they each found the school that matched their needs, the path that worked for their personal dreams, and made it not just a possibility but a reality.

College IS possible for young people with CP. They can make their mark and change the world. They can recolor the way society views students with CP. They can affect change. They CAN succeed.

Unni G. Narayanan, MBBS, M.Sc., FRCS(C). A headshot of a broadly smiling man with short silver hair wearing a dark suit.

CP Stories: Hospital for Sick Children Surgeon Unni Narayanan

There is so much more society can do to allow people with disabilities to live fuller lives.
Unni Narayanan, MBBS, MSc, FRCS(C)
Unni Narayanan, MD

Unni Narayanan, MBBS, MSc, FRCS(C)

As one of the top pediatric orthopedic surgeons in his field, Unni Narayanan is passionate about improving mobility and reducing pain for the young patients in his care, many of whom are children with cerebral palsy.

But his dedication doesn’t end there. With a background in clinical epidemiology, the renowned doctor is also carrying out research to identify which treatments work best and understand and define the priorities of patients and their parents.

“I see, treat, and operate on children with CP every week, and a major focus of my work is dedicated to children with CP – it’s almost a subspecialty area in pediatric orthopedics,” says Narayanan. “CP children have a variety of musculoskeletal impairments which can impact how they move or walk. At the more severe end, you have children in wheelchairs and with musculoskeletal impairments that can cause them considerable pain. They can need all kinds of operations to optimize their efficiency. My clinical research is focused on understanding patient priorities and using that to improve outcomes.”

Narayanan, who completed his residency in orthopaedic surgery at the University of Minnesota and his fellowship in pediatric orthopaedics at The Hospital for Sick Children (Sickkids), is a senior scientist at the Sickkids Research Institute, and has spent two decades working in the field. He says his background in clinical epidemiology led him to focus on improving outcomes through clinical research and surgery.

His PSCORE [Priority-Based Scales For Children’s Outcomes – Research & Evaluation] Program at SickKids invites parents and patients to share what is important to them so clinicians can make judgments about whether treatments make a difference.

“We compile evidence to support whether interventions improve the lives of kids and carry out clinical trials to see which treatments work and which work better than others,” he explains. “A major focus is developing measures of those outcomes.”

Narayanan has been involved with the CP Research Network for many years and is a member of our executive board. He was on a sabbatical in the United Kingdom when he first heard about a large research project organized by the network and has contributed ever since.

“One of the network’s first major initiatives was to bring together clinicians from different subspecialty groups and charge them to work together to develop the core outcomes,” he recalls. “I led the orthopedic part of that effort and worked with my colleagues in other disciplines to bring elements together. It was the start of a clinical registry across North America. I continue to be involved in that effort.”

He cites CPRN.org as an essential resource for ensuring multiple institutions can collaborate to use electronic health records to collect data in a structured and standardized way.

“Integrating research into clinical care is the way to go,” he says. “You are collecting data not just in one but in many institutions, which allows you to collate a higher quality of data efficiently. That’s the power a network like CPRN can facilitate.”

As he contemplates what the future of CP treatment looks like, Narayanan says he would like to see advances in preventing the condition before it can occur and that research requires time and resources.

“CP, unfortunately, is permanent. There is no cure. The damage to the brain while developing is irreversible. The Holy grail would be to reverse that,” he says. “The biggest advances being made are the substantial efforts to prevent the damage in the first place. For example, looking at babies that are at high risk and understanding how the brain works. They are the biggest advances. As an orthopedic surgeon, that is far from what I do. I am downstream of the consequences. Advances in prevention require a more sophisticated understanding of the causes.

“Having time dedicated for research is critical. As a surgeon, clinical responsibilities creep into that time. We also rely on grant money. Those dollars are hard to come by. Nether-the-less, I am very fortunate to be where I am. I have an institution that embraces research and values it.”

There is one thing Narayanan believes we could all do right now to improve the quality of life for people with CP – focus on intersectionality in our daily lives.

“While we wait for medical advances, there is so much more society can do to allow people with disabilities to live fuller lives without needing to fix them,” he says. “It’s not so much treating the child but treating society – empowering people with disabilities to allow them to live fuller lives. By adapting the environment to help people with disabilities get around more easily, you create more comfortable, fuller lives for them. You don’t need sophisticated research to do that.”