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Challenge of aging amplified for gay community

Jen Rini
The News Journal

Robyn Harland, 70, admits her knees are going a bit, but she's still the same spitfire she was in her twenties. She likes girls and doesn't care who knows it.

She feels that who she lays next to at night shouldn't influence how her primary care doctor treats her aches and pains or who she sits next to during bingo at the Newark Senior Center.

Robyn Harland, 70, a retired special needs teacher in the New York City school system - shown with her dog Rudy - says her lifestyle shouldn’t play into the care she receives as she gets older.

"Quite frankly I don't [care] who knows what," she said. "My lifestyle, that should not play into that. We are all getting old, it doesn't matter if we are straight or gay."

But not all LGBTQ seniors are as open as Harland. In fact, most aren't, equality advocates say, and instead fear discrimination as they transition into long-term care settings and rely on consistent contact with medical professionals.

The vulnerability is enough to make someone who has been out for 30 years, retreat back into the closet, says Bob Martz, community coordinator for United Way of Delaware and LGBTQ activist.

"It's particularly difficult to be getting old. So many of us had to live in the closet for such a long period of time. Many of us were rejected from our families. Many of us lost partners during the AIDS epidemic 30 years ago," said Martz, who turns 70 at the end of March.

"As we get to our golden years, who is going to take care of us?"

Such issues are just starting to gain public awareness. Organizers hope an LGBTQ eldercare conference on Monday sponsored by Christiana Care Health System and the University of Delaware can serve as a catalyst.

Panel discussions will address how "cultural competency" in the eldercare community and medical setting needs to move in tandem with the more accepting societal norms. This becomes more relevant as 25.7 percent of Delaware's population is projected to be 60 and over by 2020.

Delaware has become a retirement destination for straights and gays, Martz said. But even though same-sex marriage is legal and Delaware and there are anti-discrimination laws here, that doesn't necessarily mean accessing care is consistent nor easy.

The vulnerability is enough to make someone who has been out for 30 years, retreat back into the closet, says Bob Martz, community coordinator for United Way of Delaware and LGBTQ activist.

People should be afforded the right to sensitive care, and the opportunity to fully disclose who they are, said Timothy Rodden, director of pastoral services at Christiana Care Health System.

Though he is unaware of any specific discrimination issues here in Delaware for LGBTQ seniors, he said it doesn't necessarily mean it doesn't happen.

"You don't often hear those issues for people who are hiding," Rodden said.

Nurses at Christiana Care go through cultural competency training to ensure that every individual that steps through their door gets equal care and consideration, Rodden said. Staff are educated on policies and procedures in place in terms of visitation, patient rights and responsibilities.

The vistitation policy on Christiana Care's website, for example, reads, "We think that 'family' is anyone who is important to the patient – spouses, partners, significant others, children – anyone whom our patients tell us are family to them."

The hospital, along with Beebe Healthcare and Nemours/A.I. duPont Hospital for Children, was recently recognized by the Human Rights Campaign for being leaders in this field.

There's hope that all nine hospitals in Delaware will have that same distinction, says Tari Hanneman, associate director of HRC's health and aging program.

That openness is needed to foster trust within the LGBTQ population so health issues don't get swept under the rug. Discrimination is "off the charts" for transgender individuals in particular, she said.

"If you are not accessing care you are going to have disparities in care," Hanneman said.

Recent research has found that there are specific LGBTQ health issues. According to a report from the U.S. Substance Abuse and Mental Health Services Administration, lesbians are less likely to visit the doctor for routine screenings such as mammograms and Pap smears and have increased risk of smoking, which contributes to a higher risk for developing breast cancer than straight women.

Transgender people, for example, are also more likely to be victims of sexual assault and violence, although those crimes are underreported in that populations.

The human papillomavirus (HPV), a common sexually transmitted infection that can cause cervical cancer and anal and genital warts, is often downplayed as an unsightly inconvenience, the report said. Gay and bisexual men are estimated to be 17 times more likely to develop anal cancer than heterosexual men from the virus.

In order to address those issues, it could take some bluntness on the part of a doctor to ask – are you gay?

Though at first awkward, Janet Idema, 61, is thankful her partner, Pat's, radiology oncologist asked the pair that question when she was getting treatment.

Pat Higgins, left and her partner Janet Idema of Rehoboth Beach working out at Elite Physical Therapy in Rehoboth Beach.

Pat, now 67, had been diagnosed with cancer of the throat and tonsils, an HPV-related cancer, something the oncologist said was a growing problem in the lesbian community, Idema said.

"He was actually addressing a hidden issue. I am a nurse and I had no idea," she said. "I was very grateful for that."

Idema understands that some may be uncomfortable with that question, but she doesn't find it offensive so long as the doctor has something to offer her.

"The reveal of sexuality should be for disease specific issues," she said.

"I think as a community we have to demand more specific care. How does this affect the lesbian community. That's how we made a difference with HIV. We were out there and we were demanding that care and money and research."

She and Pat have been together for the better part of 23 years, "minus three, plus one," Idema joked. While they have not faced discrimination in Rehoboth Beach where they live, Idema says the community lacks social support groups for LGBTQ health related issues.

There are sports teams and other recreational activities, but nothing to help walk people through navigating the long-term care network or how to come out to your doctor.

"Nursing homes are not gay friendly places in the sense they are not set up that way," she said. "I would love to have a nursing home that catered to the LGBT community because I think a lot of people are uncomfortable."

If people are uncomfortable, Harland is not hearing it.

After retiring from a life of activism and teaching in New York, she moved to Newark six years ago and found herself in an unexpected position.

"It took me two years to find anyone who was gay in this town," she said.

Carla Grygiel, director of the Newark Senior Center Harland frequents, said that many LGBTQ seniors are reluctant to seek out and take advantage of community resources despite the fact that the center is open to all.

"People engage in activities here and it doesn't matter what their sexuality is," she said. "We are happy to have people participate and we are happy to provide them an opportunity to socialize with other people."

There are a lot of resources to help, but people just have to make the first step, she said.

Grygiel said the center offered specific LGBTQ programming related to legal issues like estate planning and health care a couple years ago. Though there were limited responses, the programs were meaningful.

One woman, for example, lived with her partner for 40 years, but because they were not married, she was not on the deed to the house. When the partner passed, she was homeless, Grygiel said, so she sought guidance.

"She was left out in the cold. That was her house as much it was her partner's house. She was just not on the deed," she said.

Going forward, it's critical to understand these legal and health issues for the LGBTQ aging community, added Delaware's Health Secretary Rita Landgraf.

"We really need to understand. We need to respond and support all cultures, all varieties of human beings. We need to spread that level of knowledge transfer and understanding throughout our delivery system."

Landgraf said the healthcare system is not there yet, but the policies are shifting as families become more diverse. She said she still hears horror stories related to ignorance, bullying and fear of disclosure.

"This population has been brutalized for disclosing, for maybe looking somewhat different from the norm," she said.

"I think the youth of today are probably going to get better health outcomes as they age because we are addressing these culture competency and access issues now."

Jen Rini can be reached at (302) 324-2386 or jrini@delawareonline.com. Follow @JenRini on Twitter.