This is our third Down Syndrome Awareness Month (DSAM) where we have had Blake and Amelia assuming roles of iconic characters. Amelia's mother, Nicole and I feel like it is a creative and unique way to celebrate DSAM! You've seen them as Danny and Sandy and Major Nelson and Jeannie and for 2019 they are SPOOKtacular as Gomez and Morticia Addams.
It is also Halloween Month (I love October) which is full of spooky and scary costumes, parties and events. One thing that isn't scary is Down Syndrome. That said, I was terrified when Blake was born. I was scared for me, for him and what it meant for our future. In the years that have passed I realized how ridiculous I was. My reaction was based on a lifetime of conditioning from a fear based society. A society who strives for generic sameness instead of celebrating differences. A society who would rather be fearful and use it as an excuse for not moving forward and evolving rather than learning, facing their perceived fears and growing. And a society who still segregates people like Blake and Amelia in schools all across the country and won't engage in inclusive practices out of fear.
I was afraid of Down Syndrome, what a gift reflection in hindsight can be. But as Blake grows I have realized a much bigger fear. I fear the world I am leaving him in. I fear the realization that I am not going to live forever and wonder what will happen to him? who will be there for him? who will protect him from this scary, exploitative society?
This community has a serious housing shortage and issues surrounding meaningful employment for fair wages. There are issues with services and supports. We continue to fight for meaningful inclusion in education and in our communities. Advocacy is a long, frustrating road but Blake, Amelia and this community need as many collective voices as possible. We need those voices to speak up to advocate and to educate for respect, and also quality of services and supports. Because let's face it the scariest thing of all is the root cause of these issues, ignorance. I was there once, before my greatest teacher, Blake came into my life.
Dear Blake and Amelia,
We will never stop fighting for you, advocating for you and educating people for you. We will combat the ignorance with education, the misconceptions with accurate information and the fear with love .. cross our hearts!
Nicole's cam
How are you celebrating Down Syndrome Awareness Month?
