A neurological disorder ended his surfing days. Now he’s making waves in disability advocacy.

Having an incurable neurological disorder limits Kevin Cook’s mobility but not his aspirations.

Since his diagnosis in 2009, the former surfer has become a historic preservation advocate, coauthored a book about the Cooper River, and had an essay, Finding Zen, published in Brain & Life magazine. He described rediscovering the joy he had known as a surfer, as well as the peace of mind that acceptance can bring.

But Cook refuses to accept the difficulties many disabled, injured, or older people often encounter trying to enter convenience stores and other retail establishments. The Americans with Disabilities Act (ada.gov) does not require businesses to have doors that open automatically. He wants to organize a local group to encourage politicians and the federal government’s Access Board (access-board.gov), which offers guidance on ADA requirements, to do something about that.

“It’s not only people who use a scooter, like I do,” Cook, 43, said during an interview at his Cherry Hill home. “Think of people pushing baby strollers, or people who are recovering from injuries, or people who had a knee replaced.

“We’ve almost got self-driving cars, and we’re still dealing with this? Give me a break.”

Ever since the ADA, historically one of the country’s most significant pieces of civil rights legislation, became law in 1990, business groups and others have lobbied against requiring automatic doors at retail establishments, citing cost as a major factor.

Some advocates contend that overall ADA enforcement has been lax, while others insist the Department of Justice has been reluctant to file enforcement lawsuits in federal court. And a 2017 executive order issued by the Trump administration had the effect of discouraging the updating of regulations.

But officials cite the incremental progress represented by new automatic-door requirements for certain buildings (although not retail outlets) contained in the latest International Building Code, which is used as a template by most states and by the General Services Administration, the landlord for federal buildings.

Nevertheless, “I don’t understand why the Access Board is so adamant in not changing” its guidance, said Mary Ciccone, policy director for the statewide advocacy organization Disability Rights New Jersey.

“We certainly understand the benefits of automation, and we do encourage it,” Access Board spokesman Dave Yanchulis said.

Ciccone noted that building a grassroots movement to bring pressure to bear on elected officials and the Access Board will take time, patience, diligence, and skillful communication. “I think Kevin is effective,” she said, noting that personal stories often have the power to persuade and inspire.

Cook grew up in Cherry Hill, the youngest of three brothers. He played baseball, football, and soccer, enjoyed karate, and began surfing at age 7 during summers with his family in Ocean City. In his early 30s, he began to experience occasional losses of balance, as well as subtle changes in his speech patterns.

But, it was not until he couldn’t stand on his surfboard one beautiful morning on the waves off the beach in Ocean City that Cook realized something was wrong, and sought help. The cruel news followed a few months later.

Cook was diagnosed with spinocerebellar ataxia type 8. This rare genetic disorder causes the portion of the brain involved in movement, speech, and other functions to atrophy; the process typically is gradual, but inexorable.

He was 32, a successful real estate professional, and the father of a 6-year-old daughter. And it was unlikely he would ever surf again.

“There’s no real treatment as of right now. But I’m hoping with all my being that something comes along that could help,” Cook said.

“It’s fate. It’s nobody’s fault. Curl up in a ball and cry, ‘poor me?’ I certainly did that. But I’m in a much different place from where I was in December 2009.”

A member of the Class of 1996 at Cherry Hill West high school, and a 2000 graduate of the University of Colorado, where he earned a degree in environmental design, Cook had gotten sober on Oct. 13, 2003. This life-changing experience has helped him deal with the challenges of becoming disabled.

“It boils down to one word: acceptance,” he said. “In sobriety you learn the value of acceptance. If you can’t, it’s futile.

“I’m better off without alcohol. Besides, one of the key recommendations for patients with ataxia is not to drink.”

Cook became involved with historic preservation in 2012 after he noticed a boarded-up former clubhouse building in the Walworth Park portion of the Cooper River Park system in Cherry Hill. His effort to protect the building from demolition was unsuccessful, but it taught him a lesson essential to any advocacy effort.

“I need to have all my ducks in a row. I need to do the research,” he said. “Right now, I’m just scratching the surface of this issue.”

Helping him out is Linda Barniskis, a life coach in Voorhees who’s been working with Cook since before his diagnosis.

“I can relate to what Kevin is doing right now with the doors, because in November 2019 I broke my hip and [during surgery] my femur was broken,” she said. “I know what it’s like with a walker, trying to get it in place and open the door and maneuver your body and hold the door open. It’s awful. What he is trying to do is very necessary.”

Cook also has been inspired by Bernadette Scarduzio, the disabled Drexel Hill, Pa., and Brigantine summer resident who persuaded the city to install its first wheelchair-friendly beach mat in 2018.

“There were six mats last year at six different entrances to the beach,” said Scarduzio, who as a child was diagnosed with Charcot-Marie-Tooth disorder. The hereditary condition causes nerve and muscle deterioration.

“I remember looking at the beach and thinking, “I know I’m not the only one who can’t [easily] get on the beach,” she said. “So I had to reach out, I needed to push and go meet people and send emails. I focused on the mission.

“Kevin can start in his hometown, and hopefully, go on from there. It can make a difference, and I am willing to help.”

Cook said he is grateful for the support and is fully aware that making convenience stores and other retailers more readily accessible to more people likely will be a slow process.

He also seems undaunted by the fact that his mobility is decreasing.

“I was able to walk 50 feet without the scooter, and now it’s more like 20. If that,” he said.

“But I want to try to take this accessibility thing as far and as high as I can.”