A RELUCTANT ACTIVIST
I was not planning on having a son born with Down syndrome but I wouldn’t change it for anything. However, there are times when I am either more sane or less insane that allow me to see that there is more to this journey than I had expected.
When Treyton was born I didn’t anything about Trisomy 21 other than your basic stereotype perpetuated by society. It was that stereotype that compelled me to make a promise to my son. I promised him that I would do anything possible to remove the unjust barriers that would try to hold him back – to keep him from being the man God created him to be.
I stand by my promise today with even more resolve than I had four years ago. I know a little more today about raising a boy with a cognitive disability, especially one that has “a look.” I now see more clearly that even well-intentioned people make assumptions about by son. I am getting a better idea of what it is going to take to create change, to form a society where Treyton as well as others with disabilities are valued for the people they are. It is going to take a village (hey, that may be a good title for a book!).
What it boils down to is this, with the birth of every child with Down syndrome the parent is forced to answer a question. There is a critical choice to be made that parents of “typically developing” kids don’t need to make. The parent needs to decide if s/he is going to be the activist their child so desperately needs. If the parent makes the choice to advocate for their child they are guaranteed a future of a lot of hard word. But if that parent does not step-up to the challenge, if that parent chooses not to advocate for his/her child who will? This same choice extends to brothers and sisters, grandparents, aunts and uncles, to anyone in that child’s life.
Robert Ethan Saylor was worth more alive than dead.
The death of Ethan Saylor has created a new sense of urgency for many parents like myself. As we seek #justiceforethan we are also seeking justice for our own children. I hope that Ethan’s mom feels support from this but I worry that she could feel like her son is being used. Ethan should not have had to die so that we could realize how urgently change is needed.
I wonder if some well-meaning person tried to comfort this grieving mother with words such as, “God has a plan to use Ethan’s death” or maybe, “now people will see on those with Down syndrome are discriminated against.” I don’t know what the words were or even if they were spoken but I think there is a good chance they were and the thought of that reminded me of something.
I was reminded of the countless well-meaning individuals that have said to my wife and I that God had a plan and that He gave us Treyton for a reason. I believe that God will use Treyton in big ways but why did He pick my kid? Why was Ethan the one that had to die? Why not someone else’s child? That is the question no one ever tries to answer. I think all these outsiders need to learn to keep their mouths shut and give us room. I believe each parent needs to come up with their own answer to the why question.
I admit that it was Ethan’s tragic death that gave me a new sense of urgency. It did. But at the same time I am reminding myself and hope to remind you that Ethan should not have needed to die for this. That his life was far more valuable than his death. But now, let’s sure as hell not let him die in vain. Get off your ass!
Earlier this week I stumbled read a blog post that caused me to think. That, by the way, would be the best thing someone could say about something I write. I am not looking for you to agree or disagree but to think and hopefully act on it. This post by Walkersvillemom was called “With F.R.I.E.N.D.S. Like These…” and was written with a lot of emotion. Check it out.
The post originally caught my attention because I equate the organization “F.R.I.E.N.D.S.” with seeking #justiceforethan. As I read through it there were some very surprising things. I am not saying any of this is truth or that it is false, I read this as one person’s perspective on something I didn’t know anything about. I will say I sure can’t seen any benefit for making this up. Regardless, what this article caused me to think about was first that it takes all types of people, you know, a village. This writer is doing what is natural to her, what she feels passionate about.
The second thing that hit me was that we cannot rely on an organization to do what needs to be done. One of the things I try to teach my children is that you cannot control what another person does or does not do, you can only control your own actions and reactions. The Down syndrome organizations that I am familiar with seem to all be fairly good at basic knowledge and support type activities. I attended a webinar this week about the impact of Down syndrome on the parents’ relationship sponsored by the NDSS. It was good. I am thankful for that type of support.
Access to things like this webinar is helpful but it is not changing society as a whole. I don’t think they should do away with these things but add it them a larger emphasis on activism, changing the way society views people with Down syndrome. Combating the mindset that the life of a person with Down syndrome is at best something to be tolerated and at worst something to eliminate. This is where they have fallen on their faces.
It looks like it is up to you and me.
So, what did you choose when your child or grand child was born? I read another blog post that stirred something inside me this week. “The Silence Frightens Me” by MardraSikora.com makes you think about your own sense of urgency about how society views kids like Treyton or young men like Ethan. The author compares the number of signatures on the petitions seeking #justiceforethan to a petition about a Disney princess character. Trust me, the numbers suck.
So, are you up for it? Your child needs you to be up for it. I don’t know what you need to do but you do. Like I have said before, “Do what comes natural to you, just do something.” The reality is that most of what you need to do will be part of everyday life, things like your interactions with neighbors, teachers, doctors, etc. There are also the big things like seeking #justiceforethan. Again I ask, “Are you up for it?”
If you don’t advocate for people with Down syndrome who will?