‘Social Security is not the way to live’: Maine couple talks growing older, living with disability

Sandra Butler, University of Maine, and Luisa S. Deprez, University of Southern Maine

Originally published in the Bangor Daily News on August 29, 2014.

Editor’s note: In this monthly series, the authors will introduce you to people who are apt to be your neighbors, are struggling to make ends meet and have been affected by specific state policies. To share your story, email Sandy.Butler@umit.maine.edu or call 581-2382.

Claire and Lonnie El-Hajj feel lucky to have found one another three years ago.

It was a chance meet-up in Cascade Park in Bangor, in July 2011, when Lonnie, who uses a wheelchair, approached Claire to talk to her about her dogs. His doctor had told him that a dog might help him feel less depressed.

In describing their first meeting, Claire joyously said, “I thought he was coming over to ‘spare change’ me, but he wasn’t even looking at me. He was looking at the dogs. He said he needed a dog and wanted one that was sturdy enough, that if it fell off the wheelchair, it wouldn’t break its leg. Six weeks later, we were married. It’s unbelievable.”

Lonnie teasingly added, “She got lucky” — illustrating the good-humored banter that flew between them during our interview.

Both Claire and Lonnie receive Social Security Disability Insurance because of physical disabilities, which abruptly interrupted their working lives when they were in their 40s.

Claire described how their status as working adults quickly changed once they experienced disability and began living on fixed incomes: “We both came from big families. Mine was a poor family; his wasn’t. We’re intelligent, and we were making good money at the time. But when it all starts sliding away, it slips off like snow off the roof, and then it is done.”

Claire began working at age 15, and five years later, she started her 22-year career on the clerical staff at the Bangor phone company. At 42, her multiple sclerosis, diagnosed only a few years earlier, prevented her from being able to do her job.

Lonnie began working in grade school, helping out at his family’s store. For nearly 30 years, he owned his own contracting company in the Winterport area and had many lucrative real estate investments. At age 47, he suffered a massive stroke.

He was homeless for some period of time before eventually securing a subsidized apartment in Bangor, where he was living when he met Claire.

Claire and Lonnie’s marriage has led to some loss of services for Lonnie. His Social Security Disability Insurance check is just over $800 per month. He recognizes that as a self-employed contractor with a “good accountant,” he probably did not pay into Social Security as much as he should have, given his income, resulting in relatively low benefits.

Prior to his marriage to Claire, he was eligible for Medicaid (MaineCare), Section 8 housing and the Supplemental Nutrition Assistance Program, also known as food stamps. He also received some personal care assistance and help with transportation.

Lonnie and Claire’s combined annual income puts them just over the income limit to receive any means-tested benefits or services. They live together in the Brewer apartment Claire has lived in since she left her house.

Claire receives both her Social Security Disability Insurance benefits and a small pension. She also receives supplemental health care through Blue Cross, and Lonnie has been able to be a beneficiary of that insurance now that he is no longer eligible for Medicaid.

“There are people out there that think ‘I’m going to retire, and I’ll have Medicare, and I’ll be all set,’” Claire cautioned. “But they have to realize that there is so much that is not covered. And not everyone is blessed with the good medical plan that I have. I had a good union job.”

Even with supplemental health insurance, Claire and Lonnie struggle to meet their basic needs, especially in the months when they need to pay the co-pays on the many medications they require.

“Our income is unpredictable, because it is either the month we have to buy the pills, or I break my arm, or he develops another potassium deficiency, and we have to buy another medication,” Claire said.

Recently, they needed to buy wheels for Lonnie’s wheelchair, and then they lost all the food in their freezer when it would not close properly.

“We have no fallback, no savings. So when those things happen, it is a huge hit,” Claire said.

When asked what they do when there is not enough money, they said they don’t buy groceries, or they skip paying bills. Because Lonnie has some digestive difficulties and needs to eat a specific diet, they are not able to take advantage of the food offered by food banks.

They collect cans and bottles on the roadside for extra money and sell belongings through newspaper advertisements and Uncle Henry’s.

Despite their very tight finances and the physical pain they live with, there is clearly much joy in their lives. They are very grateful to have found one another after years of loneliness.

Claire remembers looking out her window at the activity and people on the busy street where she lives and thinking, “Nobody knows I’m here. I’m just dying here by myself.”

Earlier in his life, Lonnie helped start the ambulance corps in Winterport and was a volunteer basketball coach. He would love to be employed, but not being able to drive means he could only work someplace he could access by wheelchair; and in the winter, that would be impossible.

“The blessing that we have is that we are not alone anymore. I don’t want pity. We have hard times, but we get through them,” Claire said.

Claire hoped others could learn from their experiences, providing this caution: “Don’t go blindly into your future. You may not be able to save that money, but don’t be lulled into thinking it will be fine. Social Security is not the way to live. It’s meant to supplement a pension. Of course, if you don’t work a long time, you don’t have that pension. Neither one of us, when we were in our peak earning time and we got sick, ever thought about this.”

What Lonnie and Claire don’t mention is what might have happened if Social Security had not been there for them, or if it had been converted to privatized accounts as was frequently proposed before the Great Recession and crash of the stock market underscored the risks of such a change. Because the Social Security program is an insurance program, Claire and Lonnie receive benefits for life despite the unexpected and unfortunate premature end to their careers in paid employment.

Proposals to privatize Social Security do not take into consideration the impact such a policy change would have on individuals such as Lonnie and Claire.

Sandy Butler is professor of social work and is the graduate program coordinator in the School of Social Work at the University of Maine. Luisa S. Deprez is professor and department chair of sociology and women and gender studies at the University of Southern Maine. They are members of the Maine Regional Network, part of the Scholars Strategy Network, which brings together scholars across the country to address public challenges and their policy implications.

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