People With Disabilities Denounce Marriage Penalty
PORTSMOUTH, Ohio — Before she can get the words out, he knows what she’s going to say. It works the other way, too. She always seems to understand what he thinks or needs, or even what joke he’s about to crack.
Sherri Daniel had believed it was possible for two people to be that close, to love each other that much. She just didn’t figure she’d get the chance.
Then she met Bill Adams.
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“I think to myself, ‘How can I be so lucky?'” Daniel said, smiling and leaning toward the man with his wheelchair pulled next to hers.
Daniel has spinal stenosis and achondroplasia, a form of short-limbed dwarfism. Adams has cerebral palsy, which affects his movement and speech but not his sense of humor. “I was her stalker,” he said through his chair-mounted computer and voice synthesizer.
Daniel rolls her eyes playfully. “Despite our disabilities, we still found love,” she said. “If we were able to keep our income, we’d have been married a long time ago.”
The Scioto County couple is fighting for the right to marry without becoming impoverished or losing important Medicaid-funded services — trade-offs that many Americans with disabilities have long decried as unfair.
Marriage affects various government-benefit policies and programs, including the $700-a-month Supplemental Security Income payment that Daniel, 53, relies on to round out her very modest earnings as a Project STIR (Steps Toward Independence and Responsibility) coordinator through the Scioto County Board of Developmental Disabilities.
Adams, 43, a self-advocacy specialist through the board, said he receives about $1,100 a month in Social Security Disability Insurance. If he and Daniel were to live together — an arrangement that goes against their beliefs — their incomes would remain the same. Follow their hearts’ desires and tie the knot in Adams’ beloved church, Daniel said, and she would lose most of her SSI income, making it all but impossible to cover their expenses.
Adams, typing furiously, said he feels cut off from all he ever wanted. “It’s like taking our American Dream away.”
Last year’s legal victory for same-sex marriage has helped re-energize the marriage-penalty issue on the disabilities front, said Toledo resident Renee Wood, one of Ohio’s best-known disability-rights advocates.
“It just doesn’t make any sense why you can live together and share the same bed, and nothing changes,” she said. “But as soon as you get married, you lose.”
Wood, who has cerebral palsy, lost her Medicaid coverage when she married 14 years ago. She now pays $900 a month for high-deductible insurance. Her husband doesn’t have a disability, but he has had health problems in recent years.
“He retired because I needed care,” said Wood, 57. “I need total care; I can’t feed myself. You should be able to be independent of your spouse for that stuff.”
Wood’s latest blog post on the marriage roadblocks “got more responses than anything I’ve ever written,” she said. “They came from all over the United States. That tells you how big the issue is.”
Legislators looking for a broad-appeal issue would do well to consider the treatment of married couples with disabilities, said Michael Kirkman, executive director of Disability Rights Ohio.
“They’re coming up against laws that hold them back,” he said, as ever-increasing numbers of people with significant disabilities strive to live, work and marry in their communities. “If Congress ever was going to do anything bipartisan, this would be a way for everyone to act that’s responsible and supportive of core constituencies.”
Current rules and laws force couples to lose financial support and services, violate their religious views or be content with commitment ceremonies that afford no legal recognition or protection, Wood said.
“This devalues our love and our relationships,” she said. “You’re making us choose between getting care and getting married. We can’t have both.”
Adams and Daniel, who recently spoke to disability advocates in Columbus, are trying to draw public attention to their plight. The couple started a petition on change.org (under “Marriage for Disabled Individuals”) and would welcome an audience with lawmakers.
Both live with their families, several miles apart, but they dream of sharing an apartment in town, closer to restaurants, stores and a movie theater. “That would make it a lot easier to get around,” Daniel said.
She and Adams hate saying goodbye and boarding different buses after work.
They met about five years ago, not long after noticing each other coming and going at county programs. Their first date was on Aug. 12, 2011. “And we’ve been talking ever since,” Daniel said.
On March 15, 2014, Adams tugged at Daniel’s finger and pulled off the ring he had presented her for Valentine’s Day. If she’d have him, he said, the band would henceforth be an engagement ring.
“He pushed the ring back on, and we sealed it with a kiss,” Daniel said.
With Daniel, Adams doesn’t always have to use his communication keyboard, which is labor-intensive because of his motor-skill difficulties. She deciphers his natural speech better than anyone else. “I want to know what he’s saying,” she said.
Adams, clearly pleased, uses his board to make a quip. “I sound like Chewbacca, anyway,” he says.
A graduate of Shawnee State University, Adams has always found ways around his obstacles. “Bill does really important work for us here,” said Kelly Hunter, director of adult services at the Scioto County board. “Self-advocacy is something we do well.”
Solving the marriage problem for people such as Adams and Daniel shouldn’t be that hard, Hunter said, especially in light of all the less-compelling ways that public funds are spent.
“I think this is an issue everyone could get behind,” he said.
John Bloomer, a friend who also attends programs through the Scioto County board, said people with severe disabilities face enough roadblocks in life. Adams and Daniel “should be allowed to do as they wish, just like other people.”
What Adams loves most, he tells his fiancee, is simply that she puts up with him, struggles and all.
“And he puts up with me,” Daniel said.
Both want a big wedding, but not a long engagement. They’ve already missed too much.
© 2016 The Columbus Dispatch
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