First Comes Love Then Comes Marriage
The following is a feature article from the Spring 2013 Making a Difference.
First Comes Love Then Comes Marriage
By Bill Lewis
Love, sexual relationships and marriage are common, everyday, ordinary life experiences that most look forward to and some may even take for granted, but when it comes to people with developmental disabilities, these matters have too often been viewed as taboo or considered off-limits. People with disabilities have been falling in love, enjoying relationships and getting married throughout time. However, it is happening now more than ever before, and a much needed dialogue is beginning to take place as fresh, new perspectives replace old attitudes.
"There is a trend that is slowly growing where people are more open to talking about these issues. The problem with sexuality generally and culturally is that we have a lot of silence around it, even more so around disabilities and relationships, but these are conversations that need to be had," says Bethany Stevens, a faculty member at Georgia State in Public Health, a sexologist and a non-practicing attorney.
For example, a 2010-11 report by the National Core Indicators, an annual survey of people with developmental disabilities receiving services through the state system, revealed that "39% of Georgians feel lonely at least half of the time." But, the same report showed that "84% of (Georgia) respondents reported that they could go on a date or can date with some restrictions if they want to."
According to Stevens, there are still tremendous barriers, and one is that a lot of people think individuals with disabilities are de-sexual and may have no desire to be in a relationship. But, many sexual self-advocates are pushing to change this view.
"I think people are recognizing this as a right just like self-determination," says Stevens. "We're starting to understand it's not just housing and employment that need to become a focus for people with disabilities to participate as full members of communities, but we need to be thinking about relationships and sexuality as well."
Stevens, who married Sara Palmer in 2011 in Washington, DC, has firsthand experience with the cultural stigma of those with disabilities being classified as de-sexual.
Stevens and Palmer are featured as a couple on the cover of the current issue of New Mobility magazine. You can find the magazine at www.newmobility.com/articleView.cfm?id=12296. (This link is no longer active.)
Stevens has disabilities and Palmer does not."But too often Sara is viewed by some as my caregiver rather than my spouse," Stevens says. However, she notes there is an overall shift starting to take place that is promoting inclusion for people with disabilities in all aspects of life that is making it easier for them to explore romantic and sexual relationships.
For instance, many universities are working on post-secondary education for people with developmental disabilities, bringing them into the typical college atmosphere where they are getting an education along with the social interaction that could lead to dating.
While most of society focuses on two people who both have a developmental disability being involved in a relationship, it's important to note that not all people with disabilities are ending up with others who have disabilities.
Whether it's distance, hesitancy by family members, money or typical marital spats, people with disabilities in relationships face the same problems as those without disabilities in relationships. Love and relationships are not easy. In fact those with disabilities may even face more challenges, but the desire to find a partner and someone to share your life with is natural. It is time the taboo is broken in the disability community.
Lori Berger and David Bryan
For many people, taking a trip to Israel can be a life-changing experience. Lori Berger and David Bryan would not disagree.
In the late 1990s, Lori, who has Down syndrome, and David, who has a developmental disability, both went to Israel through the Atlanta Jewish Community Center's developmental disabilities program.
The way Sheryl Arno, the director of the program at the time remembers it, "There was an empty seat next to Lori on the plane and she looked at David and said, 'Sit down.' They got off the plane holding hands. And they've been together ever since."
Lori's mother Robin, remembers they came home from the trip and Lori told her she had a boyfriend. That wasn't unusual. Lori always had boyfriends throughout her childhood and teenage years.
But she kept talking about David. "So I asked her to see if he wanted to go to dinner with us. He turned out to be quite a charmer," Robin said. "I felt like a third wheel at the dinner since my husband was out of town."
Lori and David dated about two years. Then, one night, David invited Lori to go to Bones for dinner. "We went to Bones and we ordered dinner. I had filet mignon," Lori says. "All of the sudden, the waitress came out with a plate of dessert and a box. The message on the plate said in chocolate, 'Will you marry me?' And the ring was in the box."
On September 14, 2003 in front of 350 people at the Westin Hotel, Lori and David got married. "It was lots of fun, with lots of dancing," says Lori.
Since then, the couple has lived in their own apartment in the Toco Hills area of Atlanta. They take care of their apartment, do their own laundry and cook. Each has support from consultants who work with them, but they split up the chores like typical married couples do.
"I tell my students that the one universal around sexuality is that there is no universal, and that we all have different desires and attractions," says Stevens.
As customs change and inclusion for people with disabilities in all aspects of community life is becoming more of a priority, many of the cultural barriers are starting to break down. But, as Professor Stevens points out, it's not something that happens overnight nor without a lot of involvement by many.
"I think there really needs to be training on all levels of society, looking at faith-based organizations, people who are support care workers, parents, schools and particularly special education, where it is important to learn how to talk about this in a positive way."
Lori does the grocery shopping from a list she and David make up together. She likes to make sure they eat healthy food and the consultant will go with her to the store to make sure she stays within her budget and buys the healthy food. In return, David's consultant helps him with banking and shopping once or twice a week.
For their second anniversary, they got a kitten, and it's their baby. "Her name is Sabrina Bryan and we just love her to death," says Lori.
"They complement each other and are so tolerant of each other," says Robin. "They don't always agree, but they get over it quickly."
Robin notes after a spat, Lori's usual response is, "Men. What are you gonna do about them?"
But the spats are few and far between. They've had a wonderful relationship and life for over 10 years now. Offering the simple reason how, Lori says, "Because I love him."
Jamie and Michael Teal
Bill Holley, executive director of the Athens Multiple Choices Center for Independent Living, has known Jamie and Michael Teal for a long time. "They don't know any strangers," he says in describing the couple. "Really friendly... the kind of people you're proud to be part of their lives."
They first laid eyes on each other in the lobby of the Roosevelt Rehabilitation Center in Warm Springs over 17 years ago.
"We were both living in the dorm there," says Michael. "I was helping as a sighted guide for people to get to the dining hall from the dorm. I saw Jamie in the lobby and I casually asked her where her cane was. We were just kind of passing."
Jamie, who has a traumatic brain injury and visual impairment, was there for an Independent Living Skills program. Michael, who has dyssemia, is cognitively impaired and was enrolled in a job-training program for the printing industry.
Michael admits he didn't really like Jamie right off the bat. But during the spring semester, "It's one of those things that kind of blossomed," he said. Jamie says, "We used to call each other 'our better half.' It was kind of a joke around the school."
After graduation, Michael moved back to Marietta and Jamie to Athens. Once a month trips became once a week treks to see her. Eventually Jamie moved into a one-bedroom apartment to try things on her own. Michael would visit and stay on the couch.
Michael later moved to Athens and into the apartment. Things went pretty well, with the occasional hiccups. Both families approved, and they got married in 1996. Jamie says she brought organizing strength to the relationship, while Michael helps with everything visual, including their transportation needs.
Today, the Teals live in a condo that they own in Athens. They are very active in several organizations around the city and are instrumental in helping with marketing, advertising, fundraisers and social activities.
Jamie has an assistant that comes in five days a week to help take her to places like the doctor, to get a haircut or with other needs. Grocery shopping she and Michael do together. And who cooks? "Well, that depends on what we want," says Jamie. "Mostly we go to restaurants."
So what's the secret to their 17 years of success at marriage? "I haven't figured that out yet," says Jamie. Michael has a more spiritual answer, "At the end of the marriage ceremony it says, 'What God has joined let not man put asunder.' Even though we have normal issues as well as issues with our disabilities, with God in our lives...well, I just don't go against God."
Carmine Vara and Amanda Lineberry
"Well, I can tell you this: I didn't think it would ever happen," says Nancy Vara, mother of 29-year-old Carmine Vara, whom she proudly shares is newly engaged to 26-year-old Amanda Lineberry.
"Carmine is handsome and friendly, works at Stone Mountain Park and lives in his own home," says his mom. He uses a motorized wheelchair and requires 24-hour personal care due to his cerebral palsy. Amanda lives with her family and has autism. "She's a real sweetheart and really cares about Carmine," says Vara.
The couple met through Amanda's sister who worked for Carmine's father. The sister knew Carmine through the office and she and Amanda were at the mall one day when Carmine was also there. They all started talking and Amanda gave Carmine her phone number. "It was love at first sight," says Carmine. "He came home awfully excited," his mom said.
And for three years, they've not only been dating, but burning up the phone lines. Vara remembers, "AT&T actually called me and wanted to know if I wanted unlimited calling for his line because otherwise it was going to cost $1,300."
The idea of Carmine having a girlfriend was exciting for Vara. Even though they live 30 miles apart, the families and support staff help Carmine and Amanda go to movies and dinner. And one of their favorite activities? "Swimming (in Lake Lanier)," says Carmine. Amanda "looks good," says Carmine, "and she makes me feel loved." Not only that, "She's a very caring person," he adds.
"When marriage came up though, I thought, 'Are you kidding me'?" says Vara. Dating was one thing, but "we're talking about Medicaid dollars, Social Security, the legalities of that, Carmine having 24/7 direct support staff and people in the home with him. And now with the possibility of having a wife in the picture who doesn't have support staff, and the support staff dealing with him personally ...there are lots of issues."
Vara points out that even in a marriage between people without disabilities family dynamics can play a part. And that issue is substantially heightened in this situation. For both Carmine and Amanda, there has always been some form of adult supervision in their lives, whether it's parents or support staff.
Vara has "suggested" to Carmine that they be engaged for a couple of years. "There would need to be boundaries," she says. That includes family and support staff. And there are money issues as well. Carmine currently has a roommate who helps with expenses.
Amanda receives Social Security, but there is a possibility that income would be reduced as a married couple. But, as Carmine says, he thinks one of the best things about being married would be, "Having Amanda cook for me."
"They are definitely in love, there's no doubt about that," says Vara. "But marriage is a whole can of worms with lots of things to think about."
How will this affect your Social Security (SS), Childhood Disability Benefits (CDB), Supplemental Security Income (SSI), Supplemental Security Disability Income (SSDI), Medicaid, Medicare or other government benefits?
• Will married individuals lose CDB or Medicare? Since Medicare and CDB are "means-tested" programs, the SS Administration won't look at assets or income to determine eligibility. Normally CDB ends if the person marries, but if a person with a disability marries another person who receives disability benefits, then he/she is still eligible for CDB.
• Will you lose SSI or see reductions? When they marry, both individuals' income and resources will be assessed in determining SSI eligibility. If both people receive SSI, they will remain eligible, but there is a "marriage penalty." Because their assets combine as a couple, their SSI could be reduced.
• Will you lose Medicaid? The federal Medicaid program combines a couple's income and resources, and if those income and assets exceed the Medicaid eligibility levels, the individual could lose his/her Medicaid and safety net.
• What about wedding gifts? Gifts of money given directly to the couple will adversely affect government benefits. Although cash benefits won't affect Medicare or CDB, it's important the couple receive only household or gift cards that cannot be redeemed for cash or food items, without affecting SSI or SSDI benefits.
Getting married could affect the benefits you receive, but each person's situation is unique. For more information, visit http://www.specialneedsalliance.org.
Recently, WTVM featured a story of couple with disabilities seeking a life together in a group home. Click here to read the article now.