My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Wednesday, January 7, 2009

To Be or To Have...That is the Question...

Sarah and I began blogging back in September and I must admit the response has been life changing. I feel connected to the world of Down syndrome like I never have before. One of the things that has struck me is although we have more chronological experience than many, there is still so much to learn, new ways of thinking, and changing terminology. Not too long ago an anonymous poster left the following comment:

...I have one very minor suggestion... when you say "just happens to BE Down syndrome..." it gives the impression that it is the only thing you are. But it's not, it's only a part of who you are. I think "Just happens to HAVE Down syndrome" would be more flattering to your situation. :) Or even something creative like "just happens to have an extra chromosome..." whatever you like the best.

And this really got me thinking. I'm curious how others feel about this? Do you say...to be...or to have?

33 comments:

SunflowerMom said...

I must admit, I noticed it too when your blog layout changed and it made me cringe. I choose to think that Down syndrome does not define who Sean is, part rather is a part of him. Just as he has blond hair, blue eyes and other traits. While I personally would not say "Sean IS Down syndrome" I also think it's a personal choice. If Sarah wants to say she "is" Down syndrome, then that is up to her.

To me it's just too close to saying "She is Mongoloid."

Lacia said...

I say Kaia HAS Down syndrome. To me, to say she IS Down syndrome almost implies that Down syndrome controls her life. Yes, because she has Down syndrome, she does have challenges that she may not have had she only had 2 chromosomes instead of 3, BUT, she is a person first and foremost, and she is in control, not her disability. Down syndrome is part of her life, buts it's not the only thing that's part of her. I beleive she should be defined as a person, not a medical condition. Does that make any sense?

Kari said...

The 3rd 21st Chromosome is just one very small part of Tristan. He has 46 other Chromosomes that make him who he is. So He isn't Down Syndrome it is just something he has. :) and That's My thoughts!

Maureen said...
This comment has been removed by the author.
Maureen said...

Hi Joyce and Sarah, you know when I first read Sarah's profile that kind of caught my eye too. My impression is that you can "have Down syndrome" or "be a person with Down syndrome" but "to be Down syndrome" just didn't fit or sound right to me. Think of other conditions and syndromes. She has super powers; he has cancer. Was it pretty commomplace to say that one is Down syndrome in the 90s?

JRS said...

Thanks for opening up this discussion. I wouldn't have mentioned it otherwise, but I too had a reaction to the word 'Be' when I saw it. First and foremost, it's up to Sarah. No one should tell her how she should describe herself. However, my preference is to say Sophie "happens to have Ds." She is so much more than Ds. To say she IS Downs (uggh, and many, many medical staff have said this) rubs me the wrong way. It's limiting and unfortunately comes with misinformation and preconceived ideas. I think of it this way, I have loved ones who have fought breast cancer. They don't talk about BEING breast cancer, although it has been a huge part of their lives. Hope this helps.
---Jen

hjoy said...

When I describe Junior I say he has CP, seizures, lung disease, etc, But he is happy, funny, intelligent, etc.
I want people to see that his disabilities don't define who he is.

Amy said...

I prefer to say Emma has Down syndrome. I've noticed many parents of young adults still say their child "is" Down syndrome, and I think this change has to do with the more recent shift towards person-first language. To be honest, I actually prefer to say that Emma has Trisomy 21, and will generally ask that medical providers use that term. However, it is rarely used by other families and I began using Down syndrome again, because I want Emma to have a way to refer to her condition that is understood by the general public and her peers in the disability community. Does that make sense?

Stephanie said...

Personally, I say Aiden has Down syndrome. To me, it is just a small part of who he is. But in the same token, he wouldn't be mine if he didn't have Down syndrome.

Karly said...

I compare it to so many other situations...people have cancer or dyslexia or curly hair. It's not who they are to me, just part of their "description." So I say that my daughter has big blue eyes, wavy dark blond hair and Down Syndrome.

But I think it's just a more current way of thinking of people with Down Syndrome. I cringe when people say "Downs Babies" too, but it was the common terminology until recent years and I still hear it from the medical community. There just seems to be a higher awareness these days and an effort for people to see our children as children first, children who just happen to have Ds.

I love your blog. And appreciate so much that you and Sarah share your lives with us.

RK said...

I have found myself in the minority from our entry in this world, in that the terminology stuff just generally doesn't bother me. I admit that it annoys me when people use the phrase "happens to have DS" because I don't think it's happenstance. That's more about my big picture view than about her condition. We never ever say that Braska happens anything. She does have DS, so that's how we would say it, but honestly, I've heard many descriptions and only the crudest catch my attention. Quite honestly, we almost never use the terms as we are big acronym people, so DS is always the way we refer to it in whatever context.

This is a hot button issue for many, and I understand the reasons given. It's totally fine with me. But I just don't really think about it too much either way. I know that some get very upset with the whole "Down's kid" or such and for me it's not important. We may say that we have a fussy baby or a cute baby or there's a mean kid at school that we know a troubled teen or a smart boy or a blue-eyed girl. All those things are descriptors and to me it's obvious that they don't define the child completely, no matter if it's negative or positive.

I try to be respectful of others' feelings on this, and that's good. But as far as how you and Sarah talk about things, that's only for you. I think about Dan Drinker and his family...he calls himself a "Downsy," as does his family and others, which I know would drive many of my friends to instant rage if it happened to their kids. And I know he also grew up in a different time, but really I just think sometimes we're just a tad too sensitive. I have far more important things to get upset about! :o)

Lianna said...

A long time ago, I noticed that many people referred to Gabe or about people with Down syndrome as "the Down's kid/child". And once I began blogging and reading and participating, I've made it known that we don't use that kind of language in our family. Down syndrome is not Gabe. Gabe has Down syndrome as well as many other characteristics. However, I have found that families within the Down syndrome community have their own specific language and who am I to tell them otherwise?

But I cannot lie, personally, I wish not one person was defined specifically as "the Down's kid/child/boy/girl/client". To me, the first step of awareness would be to strip away the labels that keep society's preconceptions as they are right now.

Jennifer said...

Well, I agree with everyone else! But, I also think it's a very personal thing and you and Sarah have the right to feel/say/describe however you want to!!
Take care!

Kelly said...

I think it is great that you brought this up. I think it lends an arm of education for those who come across this blog, especially when you read all of the comments!

I agree with those who have commented before me that it is Sarah's choice as to how she would like to refer to herself.

But, since you asked for the opinion of others, I do have to say that I have become a little picky about terminology and prefer to say Landon has Down syndrome for the same reasons as everyone else has listed.

narretto said...

I could repeat what most people said, but I think it really depends on what you and Sarah decide.I think that we all know that you do not think DS defines Sarah, just like cancer or any other descriptor word does not define a single person...it is just something that someone has. I will say that until I had William I really did not think much about it.

traceylynndel said...

We say Katya has Down Syndrome. Some people get offended if you don't use the current politically correct term. But I think it is what ever your family feels comfortable with. Times and terms change all the time. Use what you feel the best about. I don't think anyone has a right to be upset about what you call yourself or your daughter as long as Sarah is fine with it anyway.

sheree said...

just being a parrit here...I definitely dn't say Gabby IS down syndrome. However, my doctor does say this a lot and it doesn't bother me.

I think it really is hard to expect EVERYONE to be able to identify and think along the same lines as everyone else when it comes to this. So long as someone is not being purposely disrespectful, I am fine with it.

I have a bajillion other things to worry about and someone saying my child is a "down syndrome baby" just isn't one of them. I understand why it bothers some, I'm just saying it doesn't particularly bother me.

:}

sheree said...

I hate when I mispell and can't go back to correct it! Grr...

Jaxsons Fight said...

I say whatever. Somebody got mad once that my friend said he was downs. Whats wrong with downs. I don't care what people call him, I know who he is. Actually I usually say Trisomy 21.(But thats probably because i have other trisomy friends) Hugs from Lacey and Jax

Megan said...

We say Stella has Down syndrome. I'm with the others who use people first language, too. :-) That being said, I think that you've got to take it with a grain of salt, right?

AZ Chapman said...

I am agreeing with what everyone else typed HAS is better

Jeff said...

My 5 year old initially described his sister "Macy is Down Syndrome", but as I think about this, it seems that it was more of a maturity or use grammar issue (he is funny, she is short, she is sick, he is Down Syndrome) where descriptions of people are less like a possession of an object or something.

When I have talked to people with Down Syndrome, I find that they say, I am Down Syndrome or I happen to be Down Syndrome.

We promote family and friends to say "she is a baby with Down Syndrome" instead of "she is a Downs Baby". But I am getting less sensative to what people say and many times they are not trying to offend or be mean.

I probably say "he is Autistic" when I should say, "he has Autism", or "we did a fund raiser for cancer kids" when I should say, "we did a fund raiser for kids with cancer."

Beth said...

I believe it should be "has" Down syndrome. I know the common terminology uses "is" for many disabilities--"is blind", "is autistic", "is deaf", but I just don't like to define my daughter in such a way.

When I read the header (a few weeks ago, when I first found the blog), I assumed Sarah wrote it, so it didn't bother me. It does bother me when people say "is Down syndrome" when they are talking about another person. I also don't care for the phrase "happens to have". I don't have a rationale for that, but it just irritates me. I don't "happen to have" blue eyes, I just "have" blue eyes.

I do think that all this terminology talk is relatively new. It's a personal choice, and you get to do what you like!

heather said...

The first day after Morgan was born I noticed that everyone in the NICU was saying 'has Down syndrome' and not Down's baby so right then my husband and I decided we would always take the time to say the few extra words and say she 'has' down syndrome. It does bother me when I hear people say 'Down's baby and is Downs' because I feel like it would be the same as saying my son is asthma. It is something he has but he is NOT the diagnosis. It is hard to keep up with all the politically correct stuff though and I think the people-first language is new to this generation of babies.

WheresMyAngels said...

I'm a HUGE person first advocate. My daughters should be seen as people first.Their down syndrome is just a part of them, but doesn't define them. So I say they have it.


But I am also a person whom will use the "MR" word. To me it is a dianoges, nothing to be ashamed of. I don't say my girls are the "R" word, but I will say they do have it.

Michelle said...

You know, I just took it for out-dated terminology. In fact, a couple weeks ago a lady at the drugstore asked me if Ruby "is Downs?" and I said, Yes, she has Down Syndrome - and turns out this woman has an adult daughter with DS! So, it was very fun to get to chat with her a bit. (sounds like her daughter is very computer-savvy, too, like Sarah!)

I think Sarah is a smart and confident young lady and she can call herself whatever makes her happy! I'm so glad you'll be continuing with the blog while Sarah's computer is off for repairs.

Carol N. said...

Wow, what an amazing response you've got to this post! Interesting stuff! Thanks for bringing this up. After reading these posts, what does Sarah think?

Cathy said...

I tell people that Lily has Ds. I don't want her to be defined by an extra chromosome.

However, I 100% agree that this a decision for Sarah and you to make!!!!!

Jaimie said...

I say: to have :) I try to always use person first language...the boy with autism, rather than the autistic boy. Sarah, who happens to have Down syndrome, not Sarah, who is Down syndrome.

that's just me though :)

Mary said...

Wow, hot topic! I think everything I would want to say has been said in previous posts. For us, definitely HAVE/HAS.

Michelle said...

I probably don't have much to say that everyone else has already said :) I too did notice that in Sarah's profile and had been meaning to ask about it...I thought maybe it was from being born at a different time. Like most others said, I personally don't consider Kayla BEING Down syndrome, but rather something that she has, not who she is...but that is my preference and it certainly isn't my place to say what you and/or Sarah say! That's between you both and what you are comfortable with :)

Alexandra Mikaela - Awareness Warrior said...

Well, I think it depends on the person. I think that yes, Ds is a part of who a person with Ds is, but it's not all that the person is. I have never said "I just happen to be Dermatomyositis", I say I have DMS. Sure, DMS is a big part of who I am. I live with it every day, and had the problems in my life from DMS not occurred, I doubt I would be the person I am today...but I would certainly not say that DMS is who I am. I truly believe Sarah is much, much more than Ds...she is a beautiful, caring, loving person, and I really hope that she knows it

Leah said...

Angela is an amazing kid. There are lots of things I would use to describe her, but DS isn't really one of them. Just like I would never want Angela to refer to her friends as "my Jewish friend", or "My islamic friend", I wouldn't want her referred to as, "My Down Syndrome friend." I just want her to be their friend, not categorized by the extra chromosome. If I stand Angela next to all her friends, and take a picture of them from behind, would you be able to pick out the one child with DS? Nope, because they're just kids, just people, and THAT is what makes Angela who she is.

I think when people say, "happens to have DS", isn't a big deal. I understand what they're trying to say, that the DS isn't a big deal, it's almost an afterthought. So that the reader who may not be familiar with DS can see "Wow...it doesn't even bother them!"