I have always tried to be an ‘aware’ human being. From the time I was little, I was ‘aware’ of differences, but also aware of ‘similarities’………to me, this is what makes life interesting.
So when my daughter Emma Sage entered into my life, I was aware of her ‘differences’ but also acutely aware of her ‘similarities’……and as life has moved forward…………..the differences and similarities have seemed to just blend together and I actually just see Emma Sage. So, that has been my mission in life, to see the whole person, not focus on their differences or their similarity…..but to see the person, for exactly who they are….the unique individual. I always thought I was ‘aware’……but as I travel this journey as Emma Sage’s Mother, I realize that I also have a long way to go to become fully aware. I try and I guess that is what I would hope all people would do, to try to live their lives ‘aware’ of others.
But I see…………..the looks, the trying to figure out exactly what it is about Emma Sage that is different. That is the most common experience we have had to date. That look ……that double take . I can almost hear their thoughts ‘ What is it about that little girl that I notice is different’ …..another look . Sometimes a smile of recognition, other times a look of pity. The most common comment I get from strangers that do engage with us in conversation is “She must be very tired”……to which I want to say ‘No, it is just her sleepy looking eyes from her extra chromosome’…..but usually I don’t, I just smile and say nothing.
She has only had one blatant act of discrimination [and the way I look at it, one is onetoo many]. To this date, it still makes me sick to my stomach. When Emma Sage was three I enrolled her in a 3 year old dance class. I never mentioned that she had Down syndrome, as I truly did not think of it as being an issue. She has always behaved as any typical child, even at three. She follows directions, listens and was capable of performing the activity…….so the thought of mentioning her extra chromosome did not even cross my mind. At the first class, she and her best friend Claudia went joyfully into class. There were about four little girls that were just freaking out….crying, wanting their Mommies….but not Claudia and Emma Sage…they, along with the majority of the class stood at the bar, listened and followed the dance movements. Class ended, everyone excited with smiles. The following week, we arrive, the girls bounce into class…..they listen, they follow directions and they dance. On their way out of class, the teacher and director come up to me.
The director says “I’m sorry, but we don’t take children like your daughter.”
I was dumbfounded …..”Don’t take children like my daughter?” runs through my mind again and again. “What do you mean?” I ask.
The director begins to say that she is just not able to teach a child with Down syndrome. She continues on to say that she had ‘ years and years’ of experience working with children with Down syndrome at the Midland School and that she just does not teach children like Emma Sage at her school.
I didn’t know what to say…..I was truly speechless.
On the way home, I thought of a million things to say……..but at that moment, I was broadsided by this blatant discrimination that I actually thought I was going to throw up.
I had two choices for my daughter…..I could fight this discrimination [and have her in a place that does not want her] or I could just find her a place that accepted her , for who she was. A dance school that saw Emma Sage, not her diagnosis. I chose the later and my little girl has been a dancer ever since…………and has been embraced and accepted for who she is.
As a Mother, I must advocate on behalf of my daughter, but I also need to keep in mind her happiness and what I believe is important to her.....as she ages, I know that she will have the strength to raise her own voice to advocate on hehalf of herself.....and I can only pray that the choices I made on her behalf when she was young are exactly the choices she would have made for herself.