All She Is & All She Is Not

Analise was born 1 month and 3 days after my 4th birthday. I do not have any recollection of her as an infant so I will not type here pretending to know what it was like to bring home a newborn with Down’s syndrome or to have that newborn have open heart surgery a few months later, for that is my parents’ story, not mine, and I prefer to not tell truths that do not belong to me.

My truths on being an older sibling to an individual with Down syndrome, truths that I can share are simple; rooted in loving her and protecting her.

Analise is my baby sister; I look out for her and take care of her, just as any older sister would. Although her having Down’s has changed what being her sister looks like, there is nothing unusual to me about my life or my family or having Analise as a sister because having her is all I have ever known and all I ever want to know.

Analise having Down’s has created permanence in my roles of protecting her and teaching her and helping her. Being her sister has meant fighting off dirty looks and mumbled remarks from strangers in grocery stores, dodging friends who acted weird and uncomfortable around her, and correcting people passionately when they use the “r-word”.

Overall, I wouldn’t say I’ve aced the position of being the older sibling of someone with Down’s because nothing comes with instructions, but I’d say I’ve done fairly well.  I’d say I’ve been there to tie her shoes and help brush her teeth. I’d say I’ve held onto her hand for dear life in malls so she wouldn’t wander off.  I’ve attended Special Olympic events and volunteered to help out. I’ve played and danced and sang just to make her smile. I’d say I’ve stood up to the challenge because I never knew there was an option to sit down.

I have not, however, responded well in conversations when the fact that my sister has Down’s has been met by comments such as “aww, she must be the sweetest thing” or “gosh I bet she is always so happy”.  I often ignore or speed passed comments like these. The most pleasant response for me usually involves smiling faintly and saying “Oh yeah. She’s always happy.” In equally pleasant, but more defensive moments I’d say something about how she isn’t always happy, but sometimes sassy. I have never fully and outwardly expressed displeasure to the comment, to which I am neither completely ashamed or completely pleased with. I think in most cases, I look back and wish I had been more firm in my response and had corrected the person.

So that is what I am doing now.

I am extremely aware that most people do not know what to say and even more aware that commenting on how sweet and happy she must be seems like a really good idea. I also know that comments like these are not coming from a cruel place. On the surface, saying that Analise must be “always happy” or “the sweetest thing” seems like a friendly statement. Comments like these, however, make blanket assumptions that because she has Down syndrome she is this way. That because she has Down’s she is a certain way. That all people with Down syndrome are always happy and always sweet.

I have never been talking with someone about my other sister, Justina, and had them tell me that she must be so happy. And no one ever will because no one would ever say that about someone they have never met. In fact, no one would ever say that about anyone unless they had only ever encountered that person when they were happy. So why is it acceptable to say it about someone with Down’s?

In the case of Down syndrome, society seems to swing widely between discriminating against those with Down’s and overly romanticizing their disability. We have moved from ignoring or treating individuals with Down syndrome poorly to gushing over how sweet and loving and kind and happy people who have Down’s are. And while I would gladly take the latter, it is still not right. It is still not true acceptance.  Yes, Analise is happy and sweet and loving and kind, but she is also sometimes frustrated, sad, upset, sassy, angry, and disappointed. Having Down syndrome may interfere with her ability to understand some ill-spirited people or rude comments, it may make her less apt to know about and feel saddened by tragedies like famine and war, but it does not make her immune to negative emotions. She is multifaceted just like you and me. She hears, sees, and encounters things that she doesn’t like. Her feelings get hurt. Her expectations get let down. She can be serious and sneaky and impatient.

Down syndrome does not play a part in who she is. While Down syndrome does affect how and when she learns, it does not affect her character. To say someone who has Down syndrome is always happy is similar to saying that someone who has ADHD must always be excitable. It seems like a compliment, but it’s really just proliferating a stereotype.

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I don’t look at Analise and see Down’s, I look at her and see Analise.  Down syndrome is not who she is, it is everything she has overcome. She is light and love and joy and kindness, but she is not Down syndrome. She has Down syndrome and she is not all of those wonderful things because she has Down syndrome. She is all of those wonderful things because she is Analise.

 

Always,

 

 

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