In Arlene Schroeder’s 27 years as a New York State service coordinator for the developmentally disabled, she would often be confronted with the reality that her extensive experience did not always translate to understanding.“A few times in my career, I had people tell me, ‘You have no idea how I feel,’” Ms. Schroeder recalled. “I thought I knew. I mean, 27 years doing something, you think you know.
“But I didn’t have a clue about being disabled until I became disabled myself.”
Eighteen years ago, at the age of 45, Ms. Schroeder was diagnosed with multiple sclerosis, a disease that causes the immune system to attack the central nervous system, eventually forcing her to retire on disability. Although her disease causes a physical disability, as opposed to developmental disabilities, many of the same challenges that Ms. Schroeder was helping others overcome in a professional capacity, in terms of helping them learn to lead independent lives, were things she was dealing with herself for the first time.
Despite growing up in Hicksville, Ms. Schroeder spent a good amount of her childhood on the East End, often visiting her aunt and uncle who owned waterfront property on Edgemere Road in Noyac.
“I’d come out here with my grandmother, and while the adults were inside, the beach was my playground,” said a smiling Ms. Schroeder, looking out the bay window of the Edgemere Inn, a bed-and-breakfast for the disabled that she opened up this past summer, just two houses down from the former family hangout. “I would take my family’s 10-foot dingy and go out in the Peconic fishing for blowfish. It was a blast.”
When she started showing debilitating symptoms of her MS, her childhood escape became a life-changing opportunity.
Years earlier, Ms. Schroeder’s uncle had sold his house and moved down the road to a larger one on Edgemere Road. When both he and his wife died, the house was left to Ms. Schroeder, who immediately had the bed-and-breakfast idea for the property.
“Right when I inherited the place,” she said, “I thought I want to make this a place where everyone can come and enjoy the view, enjoy the water, and just have a place to live without a hassle when they visit the Hamptons.
“Being disabled is so hard, because when you have struggles with everyday things, you get tired of struggling, so you lean on the help of others,” she continued. “But at the same time, all disabled people fear that they are dependent on someone else. So, here, I wanted to eliminate the everyday struggles and give people their independence at the same time.”
The idea stemmed from her own inability to travel and vacation, because even if she found a hotel that was accommodating, Ms. Schroeder said the nearby tourist destinations are often difficult to navigate. “It’s just not worth it, sometimes, for people with disabilities,” she lamented.
Ms. Schroeder saw a need for people like herself visiting the Hamptons, especially through her positions on the Southampton Town Disability Advisory Committee and the disabled representative for the Affirmative Action Task Force.
“It’s really hard to go to certain restaurants [in Southampton],” she began. “I could never get into Barristers because of the steps, and 230 Elm has awfully skinny bathroom stalls. Hildreth’s Department Store can be tough to navigate. The only way to enforce the [Americans with Disabilities Act] laws is through a lawsuit, and we aren’t trying to make anyone mad with lawsuits. We’re just trying to live a somewhat normal life. We don’t want to anger people—we just want to be accepted.”
Ms. Schroeder explained that she utilizes a sliding scale, based on the season and a guest’s ability to pay, when calculating her daily fees. She explained that, on an average night, she charges about $99 to rent one of her three guest bedrooms. “Plus,” she said, “this yard has the best sunsets in the world. I have to share them.”
In making her new abode friendly to those with disabilities, Ms. Schroeder has taken out a second mortgage and invested $300,000 into the home, enlarging its bedrooms, expanding its bathrooms to make them more wheelchair accessible, and tearing up every inch of carpet to allow wheelchairs to move easier on the refinished wood floors. “It was decorated last by Hildreth’s in the 1960s,” she joked.
In addition to the makeover, which included the installation of dual wheelchair ramps and roll-in showers, Ms. Schroeder also had the house rewired, explaining that a small electrical fire could have devastating consequences for her disabled clientele, who may either move slower or not be able to react in an emergency.
But she isn’t done. She is looking to eventually turn her home into a full-on nonprofit retreat during the winter months by widening paths around her property, and installing a concrete path through her yard that leads to the water and nearby kayaks. She also wants to make one of two outdoor showers accessible and create raised gardens that can be tended by someone in a wheelchair.
Later, she hopes to add a saltwater pool with a lift, and buy a van with hand controls so that she can pick up people from and take them to the train station, as well as on day trips, by herself.
“We’re talking a $60,000 conversion package for the van. People don’t realize the extra expenses of being disabled,” said Ms. Schroeder, who still mows her expansive lawns with the help of a riding mower.
But to make her dream bed-and-breakfast come to fruition, Ms. Schroeder knows it will take more than her own drive, saying that she’d welcome help from any interested organizations or individuals.
“I was physically able to do a lot more when I first moved into this house, but I had some small issues back then,” she said. “It’s an awful problem to have, but people have awful problems to deal with every day, and they deal with them. So, I have no choice but to deal with my problems and keep going.”