06/22/2010 11:03 am ET Updated Dec 06, 2017

LGBT Pride at the White House Won't Be That Gay

Janice welcome aboard />For some reason, the White House hasn't released the invited guest list for its special Pride event Tuesday night. But we know of one person who'll be there -- Janice Langbehn, the accidental activist most responsible for securing hospital visitation rights for LGBT families.  The experience should be a moment of pride at how her story has helped further the cause of LGBT equality. But the exact same moment will no doubt sear into her the stinging brand of being a second class citizen, which is far from convenient for any White House spin.

Langbehn told me that Rahm Emmanuel, President Obama's Chief of Staff, heard about her horrendous story, took it to Obama and said something had to be done. That story is enough to thaw at least some of the coldest of hearts: three years ago, Langbehn and her partners of 17 years, Lisa Pond, and their three kids were setting off on a special R Families Cruise when suddenly Pond was stricken with a brain aneurism. (This photo was taken just before they boarded the ship on the day Pond, left, died.) Pond was rushed to the emergency room in Jackson Memorial Hospital in Miami where Langbehn says she was blatantly told that the city and state were anti-gay and she wouldn't be able to see her partner -- even though Langbehn quickly produced power of attorney documentation giving Langbehn medical decision-making power for her partner. (See Anderson Cooper's interview with Langbehn here.)

Lambda Legal represented Langbehn last September in a federal lawsuit against the hospital but the case was rejected by a federal court in Florida because there is no law requiring hospital visitation rights for gay people and their families. After Emmanuel brought the story to Obama's attention, the President signed a memo in April directing the Secretary of Health and Human Services to issue regulations to allow hospital visitation rights for LGBT families. Obama personally called Langbehn to say he was sorry for what happened to her. The HHS regulations are due to be published on June 25th.

At the White House Pride event, Obama will no doubt recognize Langbehn and her courage in speaking out about the denial of simple humanity to the lesbian couple and their kids. But what no one will talk about is how Langbehn, who has Multiple Sclerosis, is now in very dire financial trouble because Pond was her caregiver and contributed heavily to the two-income family. Additionally, the Defense of Marriage Act, which candidate Obama promised to repeal, prohibits Langbehn from accessing  Pond's Social Security and other benefits that would help her family.

Langbehn told me:

"Lisa used to be my caregiver when I was ill. I was able to pretty much work fulltime up until her death and then when I got ill, I had no one to care for me. After she passed away, whenever I'd have an MS flare and I'd get ill, I'd have to go into the hospital. And then I'd have to find care for the kids because I didn't want them to go into foster care. And then I would lose wages -- and this happened with more and more frequency, culminating in my having to have a disc removed from my back and having to have brain surgery -- all after she died.

It just drained me financially. I was disability-separated from my state job -- I had been a Child Protective Services supervisor for the state of Washington for 16 years -- because I could no longer perform the functions due to my MS. Pretty much we had a meeting on Friday and they let me go on Monday in August of 2008. I applied for Social Security right away. I went from making a middle-wage income to making 150% below the poverty line. And I still have three kids to raise.

The biggest chunk is having to pay my medical premiums, which were covered when I was working. When I was separated, I had to pay for it myself so $900 of my $1800 Social Security went to just keeping my medical going. And that's not to mention the kids, paying the mortgage on the house, the car payment, all their activities. They're every busy kids -- that's one thing Lisa really instilled in them and I wasn't about to take that away."

Pond's parents had promised to help Langbehn pay for the children's schools but have not even responded to an embarrassed request for a loan. "Pre-Lisa and Post-Lisa are two different sets of grandparents, sadly," Langbehn said.

Janice and kids />This is no small matter. The kids are foster/adopted kids with developmental delays. On Feb. 18, 2007, at ages 9, 11 and 12, they saw their 39-year old mother Lisa unexpectedly collapse aboard the Rosie O'Donnell R Family Cruise ship -- a trip Langbehn bought as a surprise to celebrate the couple's 15th Holy Union anniversary. The kids literally helped carry Pond to the medical facility aboard ship before she was taken to the hospital.

Langbehn said:

"Lisa's eyes were somewhat open as they were putting her into the ambulance. We knew sign language because of the foster kids. She held up her good hand and signed 'I love you' to the kids and me -- and that was the last time I saw her eyes open." And it was the last time the kids saw their mom, too, since the hospital wouldn't let them back to say goodbye either.

Langbehn's suffering isn't over. "The brain surgery that I had for nerve condition related to the MS wasn't successful so I'm facing another brain surgery.  I'm putting it off as long as I can because they're going to have to cut a facial nerve to stop the pain. The back surgery was for the most part successful, but now I have just arthritic degeneration so I need to go in for epidural injections -- which I haven't done yet. I'm too scared to do it."

On her blog --The Langbehn-Pond Family --  Langbehn asks for donations to Lambda Legal, which helped her after Pond's death. But it's "too hard" asking for money for herself and the kids, she said. She hasn't even asked her MCC church.  The MS Society has helped with a hearing aide and childcare when she was in the hospital for a week.  "I don't want people to take pity on our family. Lisa and I just always kind of dealt with it," said Langbehn, the accidental activist who helped changed the lives of thousands of LGBT people.

But showing gratitude is not showing pity. If you want to help, the Memorial Fund is: