An Uphill Hike

“I want to go camping with you and I want to go on a hike,” said Kennedy to her aunt one day.

Kennedy is a 13-year-old Brea resident who has Spinal Muscular Atrophy (SMA) Type 1, a neuromuscular disorder that affects motor neurons in the spinal cord causing progressive muscle degeneration and weakness. She requires breathing assistance, has no mobility and needs around the clock care.

Despite these challenges Kennedy is bright, curious, adventurous and enjoys spending time with family and friends.

For many disabled people like Kennedy, the outdoors aren’t always an accessible place.

Despite federal laws requiring state and county parks to offer accessibility for disabled people, those interested in camping face an uphill battle.

Just finding what parks are accessible can be a challenge, which can make it difficult for people with disabilities to plan outdoor outings.

Many campgrounds do offer wheelchair accessible trails, campsites, and facilities. There are also specialized organizations and programs that focus on providing outdoor experiences for disabled people.

Kennedy was diagnosed at 9 months and given a life expectancy of two years.

“She has extremely limited voluntary muscle movement. She can’t breathe on her own, she can’t cough on her own, she can’t swallow or do any activities of daily living.” says her mom, Jennifer Swann.

However, Kennedy has not only surpassed her life expectancy but she has been able to have a fulfilling life. She attends regular school, she’s participated in over 7 cruises, traveled to Oahu Hawaii’, regularly visits amusement parks, the zoo and even performed as a flower vendor in an Aladdin play with the help of her mother.

“Her life is not easy. She relies on other people to do everything for her and has very little independence. Despite this, she is happy and has the biggest spirit for adventure.” says Swann.

Kennedy’s adventurous spirit inspired her to embark on a camping trip with her mother, aunt, and grandmother to Chino Hills State Park.

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Chino Hills State Park is nestled in the foothills surrounded by the communities of Corona, Chino Hills, Yorba Linda, and Brea.

Kennedy’s family has a close relationship with the state park.

Claire Schlotterbeck, Kennedy’s Grandmother, is a Brea resident and environmental activist who played a key role in the creation of Chino Hills State Park through the grassroots group, “Hills For Everyone’ Her efforts led to the creation of the park by the California State Legislature in 1983.

Additionally, Claire and the organization remain actively involved in efforts to protect and preserve the Puente-Chino Hills Wildlife Corridor.

Melanie Schlotterbeck, Kennedy’s aunt, is a conservation consultant with Hills for Everyone.

Melanie’s goal is to protect one million acres of land in her lifetime, and she continually works towards achieving it, already protecting more than 350,000 acres of land statewide by her count.

OC Parks has made some efforts for disabled park users like adding an accessible fishing platform at tri-city regional park, having a beach wheelchair available for reservations at Corona Del Mar and having ADA transportation to Irvine lake

Yet despite efforts to improve accessibility, OC Parks still lacks critical information on their website. This includes details about accessible bathrooms, power sources, braille trails, context about trail distance, surface, guide ropes, railings, water sources, cell phone reception, and wheelchair accessibility.

This lack of information can make it difficult for visitors with disabilities to plan their park visit accordingly and independently.

Melanie, with months ahead in preparation for the camping trip, hiked the trails at Chino Hills State Park to find the most suitable paths for Kennedy’s adaptable stroller ahead of their visit.

“I wanted to figure out which ones I can take her on because she’s on a flat stroller, she can’t even sit up so I had to figure out how we were going to go on a hike.” Says Melanie.

Chino State Hills Park has a number of accessible features including two designated accessible campsites, accessible restrooms and parking as well as an accessible Native plant trail and Discovery Center, according to the State Parks website.

“California’s state parks can be quite different from commercial or even city or county recreational facilities, ” said Jorge Moreno, Information Officer for California State Parks.

“State parks are often created around special, sometimes remote, natural, or cultural resources that allow us to escape our everyday lives and refresh our spirits,” Moreno added.

“Rustic campgrounds, winding trails occasionally invaded by tree roots, isolated beaches with limited amenities, and wind-whipped ghost towns challenge our spirit of adventure” he said.

Yet all those features aren’t always accessible for disabled park users.

“Though many accessible features are available, some visitors with disabilities may unfortunately experience barriers during their visit.” Moreno said.

Moreno recommends that all visitors plan properly for their outdoor adventures by visiting the Accessible Features in the State Parks website before their visit.

“This website serves as a tool for visitors to learn about the accessible features that are available at state park units. Visitors can search for accessible features by activity of interest (camping, picnicking, hiking, etc.), by park name, or by geographic region.” Moreno said.

The California parks website provides a list of 83 parks with accessible campgrounds that include restrooms and showers. You can click on the individual parks to find specific details about their accessibility features.

The California parks website lists 101 parks with accessible hiking opportunities on trails or segments leading to significant features and environmental experiences. Trailhead signs provide basic information about the trail’s width, slope, and surface material to help visitors select the trail that best meets their abilities and recreational expectations.

The California state website lists 10 parks with fishing opportunities for licensed anglers from accessibly designed piers, bridges or platforms. There are also 54 locations with beach and shore access that include accessible routes to and across the surface of a beach or shore, but not necessarily to the edge of the water. Additionally, 99 parks have accessible picnic areas with firm, level and stable surfaces, tables, and accessible parking.

“I recognize that while something is super accessible to one segment of the population it does not make it accessible to everyone.” said Melanie.

Kennedy requires more than half a dozen machines she uses every day for regular respiratory care. Coupled with her inability to regulate her body temperature, it requires additional preparation to ensure a safe camping trip and hike.

Swann recounts their previous camping trip where Kennedy struggled to stay warm, despite their efforts.

“She kept saying she was freezing and it didn’t matter what we put on her,” Swann said.

To address the issue, Melanie purchased hand warmers to place between her clothes and a mylar sheet to put under her mattress. This helped Kennedy stay warm and retain heat throughout the night.

In addition to temperature regulation, the family also had to deal with the challenge of powering Kennedy’s medical equipment which she relies on to breathe and live.

During their previous camping trip at the same park, they had to run extension cords to the bathroom, which was inconvenient and potentially dangerous.

“We just hoped that nobody unplugged them or tripped over them through the night”, recounts Swann.

However, this time around, Swann invested in a Yeti portable power station, which allowed them to power Kennedy’s equipment without having to run extension cords to the nearest power source, giving them peace of mind and improving their camping experience.

“It boiled down to contemplating in advance every thing that we needed to anticipate her needs,” says Swann.

The family began their hike on the Native Plant Trail but before entering the 200 feet accessible trail they had an unexpected encounter with a rattlesnake. To avoid any potential danger, the family opted for the second option, which was a dirt path.

Melanie planned a game of Scavenger Hunt with Kennedy.

She was tasked with having to point out one thing she could smell, one thing she could see, one thing she could touch and one thing she could hear – a more accessible way for Kennedy to be immersed with nature.

She smelled a sage plant, she saw a snake, a lizard and a rainbow. She touched a stink bug and listened to the birds and a nearby stream.

Kennedy’s family has had to be creative in order to adapt games and traditions for her. On Easter, they fill the eggs with magnets and she collects them using a pole with a magnetic end.

“She didn’t have to bend over and grab an egg, she just went fishing for them,” says Melanie.

For Halloween, her mother uses the “Switch Witch” which allows for Kennedy to go trick or treating to collect candy but over the night the good witch switches her candy for something she can actually use.

“A little bit of creativity can go a long way.” said Melanie.

The California State Parks department has partnered with Google Maps to film 110 state park destinations using Google Trekker, a backpack-mounted camera that provides 360-degree footage.

“The imagery allows people all over the world to virtually explore California’s state parks, trails, and beaches, and helps to modernize the way the department connects with visitors.” Moreno said.

This form of technology allows for anyone including disabled people to better plan their trips and navigate the parks more easily and further creates access.

Kennedy was excited to continue her hike, but navigating the trails proved to be a bit of a challenge. Rocks of all sizes were spread throughout the trail, causing her oxygen monitor to go off various times.

Melanie hikes the trails of Chino State Parks several times a week, and she’s always fascinated by the different prints left behind by hikers and animals. However, on the way back from the hike she noticed something out of the ordinary on the terrain

“You can always tell who goes through these tracks by the prints they leave,” Melanie said, “but I’ve never seen these wheel marks.”

Continuing back to the campsite, Kennedy was stopped and greeted by park rangers. Knowing in advance that Kennedy would be arriving at camp, the rangers gave her some wildlife stickers, one of her favorite things to collect.

When asked what her favorite part of the park hike was, Kennedy quickly responded saying, “Stickers.”

After a 59-minute hike covering a distance of 1.3 miles, Kennedy’s mother and aunt had to work together to push the 180-pound stroller up a road to reach their campsite.

While Kennedy is fortunate to have a family that has found a way to be adaptable and resourceful in their attempts to help her enjoy the outdoors, there are many disabled individuals who lack that kind of support.

Organizations like Easterseals of Southern California fill that void, providing outdoor experiences to disabled people for over 50 years.

“Unfortunately, many of our campers never got to experience what a typical camp was like growing up. There is absolutely very little to no recreational activities available for people with disabilities in southern California” said Amanda Showalter, the camp director for Easterseals Southern California.

“We have a motto that says ‘yes you can, if you want to’ We never say no, if they choose to participate in an activity we find the best way for them to do it. There’s lots of barriers transferring from a canoe or a bunk bed, which can be quite difficult to overcome but we find a way to do it. Our camp offers swimming, canoeing, arts and crafts, music, target sports, zip lining, low rope courses, fishing and all these things vary and are adaptable depending on the accessibility needs of the camper.” said Showalter.

These organizations are vital in ensuring that everyone has the opportunity to enjoy the great outdoors, regardless of their ability.

Kennedy was able to have a successful camping trip and hike thanks to careful planning by her family. Her family prepared for months and ensured her safety plans were in place to accommodate her needs during the one- night camping trip.

“She loved the camping trip,” said Swann about Kennedy’s experience. “Although, she doesn’t love the part where we get home and I have to spend an hour and a half completely emptying out the stroller and wiping everything down” She adds.

Although the trip was successful, Kennedy inhaled dirt into her tracheotomy, requiring her to undergo additional respiratory treatments the next day. Despite the use of two ventilator filters, all her equipment had to be thoroughly sanitized.

“That was not something I foresaw happening.” says Swann of the incident.

Despite the challenges of traveling with specialized equipment, Kennedy and her family’s journey serves as an inspiration to other families with disabled children who may be hesitant to venture out on similar experiences.

“The most amazing thing to me about Kennedy is that Kennedy is in total acceptance with the cards that she was dealt, she wakes up every single day happy.” Says Swann.

“It’s such a lesson for all of us, you choose to be happy, no matter what the circumstance is, you can make that choice and she does,” Swann said. “It’s really amazing to watch and to learn from her.”

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