Feel-good feels good. A light, alive, inside. We want it, we need it.
Parents of kids with “special needs” (– disabilities) really, really need the feel-good, especially when/if we are not used to a world of disability that has chosen us.
We want to know life is going to be sweet for our kids, that they’ll have friends, find love, be happy. That they won’t be the kid that we saw in high school, sitting at a cafeteria table alone, mocked or marginalized.
We want the feel-good.
“Couples with Down syndrome Tie the Knot”, under “Inspiring Stories” on the “Special Miracles” facebook page is one such shot at a feel-good story. The photos seem to be of a happy couple getting married. The story on the page, “liked” close to 3,000 times and shared nearly a 1,000 is:
Meet Jeanne and Charles (25 years together)The bride wore white and her groom was all smiles as she walked down the aisle Sept. 17, escorted by her father. The couple exchanged rings and vows of commitment, and enjoyed their first dance.
However, the couple, Jeanne Waters and Charles Wisner of Frederick, are not your average bride and groom. They both have Down syndrome, and because of their developmental disabilities are unable to marry. But on Saturday, they were joined together in a commitment ceremony held at the Scott Key Center, where they met and became boyfriend and girlfriend 25 years ago.
The center is a division of the Frederick County Health Department that provides jobs for people with developmental disabilities.”They’ve been Jeanne and Charlie forever,” said Portia Hood, an instructor at the center. “They could get married, but I don’t think they could carry on a household. They sit together every day at lunch, and Charlie makes sure everything is right for Jeanne. They have been very committed to each other for 25 years.”
Jeanne, 47, and Charles, 38, live in separate group homes in Frederick and will continue to do so. “They can’t live together at this point,” Hood said. But after 25 years, the Scott Key Center wanted to do something to honor this special relationship. Hood said the idea was to have a simple pizza party in the park. But the pizza party blossomed into a ceremony with blue and white table settings, flowers, balloons, food and music, thanks to help from the Frederick Area Bridal Network, a nonprofit organization that helps brides and grooms plan their wedding.
As the Rev. David Beeson, the former director of the Scott Key Center, officiated over the ceremony, with words of love and friendship, Charles smiled and wiped away tears. Jeanne held tightly onto her bouquet, at one point asking to sit down.”We’re almost done, I promise you,” Beeson told Jeanne.Chairs were eventually provided for Jeanne and Charles, as friends were asked to say a few words about the couple.They exchanged rings and gave each other a hug at the conclusion of the ceremony.”It might be raining, but the sun is shining for both of you,” Beeson said, referring to the inclement weather Saturday.
Before the ceremony, family members expressed excitement, saying they thought this would never happen.”It’s a once-in-a-lifetime thing for him,” said the groom’s sister, Jennifer Wolfe of Emmitsburg.Jeanne’s sister agreed.”This is wonderful,” said Kathy Faia, who traveled from New Orleans to attend. “[Jeanne] is so excited. I didn’t think this would ever happen. It’s really something special.”
(* note: the bold and italics were added by me)
I get the desire for feel-good, the need for it. I do, I really and honestly do.
But the point I’m trying to make here is that people with disabilities – all of ’em: cognitive, motor, sensory and psychiatric disabilities – have been victims of irrational discrimination and exclusion from basic rights in every aspect of public and private life.
Marriage is one such right.
By delving into and passing on the feel-good post to the exclusion of the truth, by saying “awwwwwwww…..” and passing it along, we are actually doing a disservice to everyone with Down syndrome. We are saying “awwwwww……” and sharing and liking a story about a couple that CANNOT get married, that WILL NOT live together. A “pretend” marriage that is about “commitment”.
I’m saying: let’s feel good.
But let’s feel good about something that promotes full access, inclusion for this tribe we care so much about. Let’s feel good about the stories like Monica and David, stories that are honestly a greater step in the right direction.
Let’s read the text behind the pictures and question things that don’t seem right.
Let’s be happy because a couple with Down syndrome who seem to be getting married in a picture actually are getting married; happy because we have helped create a system whereby they are not penalized for their marriage, happy because supports are in place in which they can comfortably live together – with or without assistance.
Let’s be happy for the right reasons.
Because we want to feel *truly* good.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
That feel good story left me feeling sad for all the reasons you pointed out 🙁 I hope one day my girls will be able to have real husbands and live together with them in real marriages if they so choose, without penalties.
I want the same for my girl… Really, I want her to have what my sons can have. I want equality for our kids, all of them.
Thank you so very much for posting this. I just read it and that was exactly my same reaction.
True they probably “can’t” get married, because SSI will conjoin their income and cut their supplemental checks which would put the group homes at a loss. It isn’t that THEY can’t its more about nobody believes in their rights to do so. Why can’t they live together??? Well this too would most likely reflect rules regarding their group homes. 25 years of happiness, love, devotion, and commitment and they get a civil union. I don’t believe in telling anyone they Can’t get married (save debate for another day) but people with Down syndrome ARE GETTING MARRIED. They are allowed to have an actual marriage ceremony. But their government aid would suffer (which I don’t agree with either) but it seems (yes speculating, not knowing this couple at all) that their group homes are dictating their basic human rights, their civil rights, their opportunities, and their lives. What pisses me off is that they are being scammed, this is the happiest day of their lives and yet they are being taken advantage of. It’s a wonderful story of their love and happiness, but this story is not in any other way a feel good story 🙁
wow…I guess I should look a little harder before I “like” something! I just saw a bride in her wedding gown who happened to have Down syndrome, and thought…that’s what I want for Kayleigh. Had I known it was a “pretend” marriage, I definitely would not have “liked” it. I agree with you wholeheartedly, Meriah! There is such a desperation of sorts, to know our children will be happy, feel loved, be liked, that when there are pictures out there that seem to depict just that, I think sometimes there is a knee-jerk reaction to want to spread it around…..”Look, here’s a man, woman, child just like mine, doing normal stuff!” I am guilty of it more than I care to admit. But I am very aware of the danger in making too big a deal of things like that…because it reinforces the idea that it ISN’T the norm. As always, you make a very good point!
Couldn’t agree more. And said so in my comments on the picture 🙂
Yeah, that kind of feel good crap pisses me off. It would be like, “OH, look at this sweet lesbian couple! They can’t get married, but they’re going to pretend and even be allowed to hold hands! But not live together or anything, because then they might have sex.”
I’d like to just say that I hope Maybelle has some fine, consensual sex with a person of her choosing when she’s quite a bit older.
What a world we live in.
Do you have an update on the not-so-feel-good story of Hava Samuels and Paul Forziano, who were denied the opportunity to live together? The CBS New York article whose link you included dates from 2013, so of course I’m curious to know what happened with their Federal lawsuit. I’m sure that most, if not all, of your readers enthusiastically support the right of people with DS and other developmental disabilities to marry and live together. Housing that receives government funding SHOULD make accommodations for them.
I agree. I don’t know what has happened – it would be good to though.