And Holland Has Tulips
April 25, 2015 6:57 AM   Subscribe

What It’s Like to Have Down Syndrome—and Care for a Sister With Disabilities While the initial focus was to portray Alyssa as just another member of her family, the project changed slightly when Carly began to lose neurological ability. Although Carly’s condition is still undiagnosed, Lois needed to continue to work in order to keep everyone under the same roof. As a result, Alyssa became one of Carly’s primary caregivers.

“You start by thinking she’s the person with Down Syndrome and then you realize in her family she has a caring role. … I wanted that part to come in later to surprise people and to get them to reflect on what they thought she would be capable of...."

And Holland Has Tulips is an interactive photo essay from documentary and editorial photographer Lani Holmberg.
posted by magstheaxe (9 comments total) 25 users marked this as a favorite
Wow, thanks for posting this. Really challenged my preconceptions. I think this FPP was clearly written enough, but I couldn't make any sense of it until I clicked and read the linked article. Simply because I couldn't wrap my head around the idea of a person with Down's being a caregiver. Thanks for opening up my world today.
posted by marsha56 at 8:26 AM on April 25, 2015 [2 favorites]

I thought this information about the title was very interesting:
About the title

'Welcome to Holland' is an essay written in 1987 by Emily Perl Kingsley describing the experience of parenting a child with a disability.

She likens the journey to travel, where one expects to go to Italy but arrives instead in Holland.

"It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, and Holland has tulips. Holland even has Rembrandts."
posted by ocherdraco at 9:32 AM on April 25, 2015 [1 favorite]

Just about everyone in the disability community is pretty sick of that "Welcome to Holland" essay (many for drastically different reasons).
posted by infinitywaltz at 11:46 AM on April 25, 2015 [13 favorites]

Just about everyone in the disability community is pretty sick of that "Welcome to Holland" essay (many for drastically different reasons).
posted by infinitywaltz at 2:46 PM on April 25

Not to derail my own post, but infinitywaltz speaks the truth. There's a few essays out there written as responses to "Welcome to Holland":

* Welcome To Beirut by Susan F. Rzucidlo
* Amsterdam International by Dana Nieder (Emily Perl Kingsley actually responded to this one)
* Holland, Schmolland by Laura Kreuger Crawford
* Planet Autism, by Scot Sea
posted by magstheaxe at 12:30 PM on April 25, 2015 [4 favorites]

Everyone responds differently to "inspirational" stories. Myself, I responded better to the Holland framing than to the "God gives you what you can handle/ God gave you this child because you're a fighter" framed stories.

Back to the posting, the family is sweet and I hope they find the type of long term support needed to stay together.
posted by beaning at 12:54 PM on April 25, 2015

What a beautiful family. I really feel Alyssa when she talks about losing her best friend to death; I still carry the loss of my best friend, but I'm so glad I said everything I wanted to before she died.

Also, Alyssa is top notch on fashion! I adore her style, especially the necklaces.
posted by Deoridhe at 1:08 PM on April 25, 2015 [2 favorites]

I didn't think it unusual at all that someone with Down's syndrome would be a caregiver. Its a continuum isn't it? There are folks with Down syndrome who have different experiences living with the condition. So there are some folks who are very "high functioning". I can see why some folks might have problems with this essay.
posted by Nevin at 1:22 PM on April 25, 2015 [2 favorites]

My work enables to me to interact with people with disabilities so this is especially meaningful for me. Like beaning and despite my religious beliefs, I respond less to the "God gives you these struggles because you are strong enough to handle them" and appreciate stories narrated like this one more.

I also find it deplorable that government assistance was refused to a family with two members with disabilities. The fact that my work gives me a chance to witness people who are obviously in no need for assistance like this family does, receive and even feel entitled to so much more makes me especially appreciate this family's story.
posted by theappleonatree at 1:52 PM on April 25, 2015

I can see why some folks might have problems with this essay.

Just to clarify, the essay that people have problems with is not the photo project linked in the FPP. And yeah, while it may be more common knowledge than it used to be that people with Down's Syndrome can have varying levels of cognitive impairment, you still don't often see stories like this one being told, in which a person with Down's is acknowledged as having an inner emotional life that is depicted with complexity and respect and as being a responsible, vital part of her family.
posted by kagredon at 2:37 PM on April 25, 2015 [7 favorites]

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