Well Said
I've been wanting to share a "Conversations about Down syndrome 101" on my Facebook for some time. So I decided it was time to contain it in a blog.
This particular blog may make some people uncomfortable. You my read the following and say, "Um.... I said that - but I didn't mean it that way!".... or "Why didn't you tell me that's how you felt about what I said?"
Please take note this is not a blog to address any specific conversation with any specific person.
Before Alvaro I didn't know many individuals with Down syndrome (DS). In fact, I've met only one person and encountered him on less than a handful of occasions. Aside from that, my relationship with individuals with DS was comprised of watching Corky in Life Goes On for several seasons. Needless to say, once I became the mother of a child with DS- everything changed. My lack of experience and knowledge was superseded by the need to learn as much as I could about my child and what having DS meant for his future.
As I have begun to share this journey with many other Moms in the same place- I find something in common we talk about, blog about, pray about, and even groan about: things other people say that are not particularly helpful (or tactful) when talking about our children.
So- instead of engaging in conversation with you and inwardly wincing and trying to see the "nice" in the words being used, I am going to post this for all to see. Consider this "Down syndrome Conversations 101: What NOT to say." These are things that for many of us, are not helpful to the conversation. In some instances they are actually hurtful.
Before I do- let me set a quick baseline of reference about what Down syndrome is: Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. Most individuals are born with 46 chromosomes that make up their genetic makeup. Individuals with Down Syndrome have 47 chromosomes. Down syndrome is also the most common genetic condition [1 in every 631 babies born in the US has DS]. Down syndrome is not a disease.
With that in mind- here goes:
Comment: You're child is so cute: there's no way they can possibly have Down syndrome!
Inference: While you are stating that my child is cute- you are also equally communicating that people with Down syndrome are not. Also stating that if my child DID have Down syndrome (which he does), that it would nullify the cute factor).This is not an appropriate comment.
Inference: While you are stating that my child is cute- you are also equally communicating that people with Down syndrome are not. Also stating that if my child DID have Down syndrome (which he does), that it would nullify the cute factor).This is not an appropriate comment.
Comment: Are you sure your child has Down syndrome, because they can (insert specified skill or talent here)?
Inference: While individuals with Down syndrome share common traits, the affect of the condition varies from individual to individual. The potential and successes of a person with Down syndrome is not limited or characterized by their condition. It is not helpful to insinuate my child can't have down syndrome because he is realizing his potential. Down syndrome does not define my child.
Inference: While individuals with Down syndrome share common traits, the affect of the condition varies from individual to individual. The potential and successes of a person with Down syndrome is not limited or characterized by their condition. It is not helpful to insinuate my child can't have down syndrome because he is realizing his potential. Down syndrome does not define my child.
Comment: He's a "Down's" kid, right?
Inference: No. He is not a "Down's" kid. He is a kid. He happens to have DS. He is not defined by his extra chromosome any more than you are by the color of your hair. This phrasing is not helpful. I want my son to be known and recognized by who is as a person, not what he has. Please use person-first language.
Inference: No. He is not a "Down's" kid. He is a kid. He happens to have DS. He is not defined by his extra chromosome any more than you are by the color of your hair. This phrasing is not helpful. I want my son to be known and recognized by who is as a person, not what he has. Please use person-first language.
Comment: "....would that be the case of he was normal?"
Inference: Sorry to disappoint you, but my son is normal. He eats, he breathes, he plays, he laughs. He poops, and burps. He'll dream and read and write and achieve milestones. This is all part of being normal. That being said, he is not "typical." Most individuals typically have 46 chromosomes in there cells. Alvaro has 47. So he is not typical. But he IS normal. Please use the word "typical" when differentiating between him and other people who do not have DS.
Inference: Sorry to disappoint you, but my son is normal. He eats, he breathes, he plays, he laughs. He poops, and burps. He'll dream and read and write and achieve milestones. This is all part of being normal. That being said, he is not "typical." Most individuals typically have 46 chromosomes in there cells. Alvaro has 47. So he is not typical. But he IS normal. Please use the word "typical" when differentiating between him and other people who do not have DS.
** These listed below are not necessarily general- but these are ones that are specific to me in particular **
Comment: "Are you praying for God to heal him? He can you know...."
Inference: God formed Alvaro in my womb. As he weaved him together he decided to add a little extra chromosome. It means he will look, talk, possibly act a little different than everyone else. That is ok. Do I want God to "heal" my son from being my son because he's not a typical person? No. I don't believe my son needs to be "healed" anymore than you need to be healed for having a mole on your cheek or green eyes. This question, for me personally, is not helpful. My son is not broken. He is perfect just the way he is.
Inference: God formed Alvaro in my womb. As he weaved him together he decided to add a little extra chromosome. It means he will look, talk, possibly act a little different than everyone else. That is ok. Do I want God to "heal" my son from being my son because he's not a typical person? No. I don't believe my son needs to be "healed" anymore than you need to be healed for having a mole on your cheek or green eyes. This question, for me personally, is not helpful. My son is not broken. He is perfect just the way he is.
Comment: "Are you sure the doctors diagnosed him correctly? He doesn't look like he has Down syndrome."
Inference: At the suspicion that any child has Down syndrome, they are genetically tested. This testing may be an amnio in utero or karotype testing after birth, among others. Alvaro has test results provided by a genetic counselor confirming that he does indeed have Down syndrome. While my son may not appear to have Down syndrome to you, genes are genes. He has Down syndrome. He is also of Latino/ Hispanic descent- whether he looks like it or not. This question isn't very helpful.
Inference: At the suspicion that any child has Down syndrome, they are genetically tested. This testing may be an amnio in utero or karotype testing after birth, among others. Alvaro has test results provided by a genetic counselor confirming that he does indeed have Down syndrome. While my son may not appear to have Down syndrome to you, genes are genes. He has Down syndrome. He is also of Latino/ Hispanic descent- whether he looks like it or not. This question isn't very helpful.
Comment: "ooops... that was so retarded!"
Inference: This may not be directed to my child. In fact you may be using "slang" to refer to something you yourself did. But the word retarded is commonly used in slang terms. This implies that a mental disability is equal to incompetence. Its also refers to intellectual disabilities in a negative and derogatory way. Many individuals, including those who have Down syndrome are affected by intellectual disabilities. Using the word retarded is hurtful to them and the people who know and love them. Many people say in defense to this usage, "But I didn't mean it that way" My question is: What other way was it meant then? If you meant silly or dumb- please use the word silly or dumb.
Inference: This may not be directed to my child. In fact you may be using "slang" to refer to something you yourself did. But the word retarded is commonly used in slang terms. This implies that a mental disability is equal to incompetence. Its also refers to intellectual disabilities in a negative and derogatory way. Many individuals, including those who have Down syndrome are affected by intellectual disabilities. Using the word retarded is hurtful to them and the people who know and love them. Many people say in defense to this usage, "But I didn't mean it that way" My question is: What other way was it meant then? If you meant silly or dumb- please use the word silly or dumb.
Comment: "God gives special kids to special people"
Inference: I wish that were true. Sadly, 90% of babies who have DS are aborted. God gives many more people children who have DS, and for many reasons, the parents choose to terminate the pregnancy. I am part of the 10% who experiences how my child who has with Down syndrome is. But you know what? My typical son is JUST as special as my son with Down syndrome. They are both awesome. They both have different talents and strengths and abilities. All kids are special. Whether they have DS, Autism, Cerebral Palsey, a great singing voice, the genius of Einstein, or any other things that are part of who they are. I am not extra special because I gave birth. I am not extra special because my child has an extra chromosome. I am not extra special because I love my child. I'm just me. God gave me Alvaro, and I am blessed to have him.
Inference: I wish that were true. Sadly, 90% of babies who have DS are aborted. God gives many more people children who have DS, and for many reasons, the parents choose to terminate the pregnancy. I am part of the 10% who experiences how my child who has with Down syndrome is. But you know what? My typical son is JUST as special as my son with Down syndrome. They are both awesome. They both have different talents and strengths and abilities. All kids are special. Whether they have DS, Autism, Cerebral Palsey, a great singing voice, the genius of Einstein, or any other things that are part of who they are. I am not extra special because I gave birth. I am not extra special because my child has an extra chromosome. I am not extra special because I love my child. I'm just me. God gave me Alvaro, and I am blessed to have him.
I don't intend to offend anyone who may or may not have said any of these things. I just wanted to share and be honest about some language and words and what they sound like when they reach my ears and heart.
I don't think anyone who talks to me about my child and says these things is trying to be hurtful. I think sincerity and love and genuine niceness is at work. But not all comments are very helpful and allow my child to be just who he is: Alvaro. So- I thought I'd take a few minutes to point out the way - towards a more conducive conversation.
Great post, Rosa, and all so true. I've been thinking about writing a similar post I would title "Owen's not special, and neither am I!" :-)
ReplyDeleteWell written sis.
ReplyDeleteWow!! I am grateful for your post. So much info I was not aware of and very translucent. Thanks for being real. We need more of it in this world.
ReplyDeleteMelanie Joy Carver