Every parent has that fiercely protective instinct. Mine makes me wrathfully stink-eye a small child at the mall play area because they pushed my pride and joy off the slide. It made me seriously consider locking my offspring in the house to guarantee safety from serial killers, pedophiles and bullies. Even before Evelyn was born, this instinct kicked into overdrive. I was angry! I was angry at the children who would exclude my little peanut on the playground! I was furious with the elderly people who would assume she should be institutionalized! I was peeved with the everyday people who would experience discomfort at her proximity, or openly stare like she was some sort of circus side show attraction! I had all sorts of preconceived notions and I was violently vindictive towards these hypothetical attackers who would dare hurt my child. I spent countless hours building an arsenal of angry rhetoric and biting replies to barrage these attackers before they even entered our lives.
After her arrival into this world, though, I experienced much less of this than I expected. The attacks I predicted, for the most part, never came. It took a while, but I began to relax. When I did, I realized what a toll all of that anger was taking on me. Constantly caught in a state of agitated readiness, waiting for attack – It was exhausting. I let my guard down and I began to enjoy my life again.
This isn’t to say that those things haven’t or won’t happen. They do, on occasion, and I’ve really had to look within myself for guidance in these situations. I have to remember before I had the pleasure of knowing Evelyn.
I always considered myself to be open minded. In hindsight, I see that was not the case. I couldn’t fully understand and accept what I had never experienced. Evelyn is capable, perceptive and loving – she is like any other child, in most ways. I now get that people with disabilities are just people. I don’t need to put them up on a pedestal and I certainly don’t need to pity them. It’s hard for me to admit when I am wrong, but I was wrong. I am ashamed of my previous thinking, and grateful that I have been shown the truth.
Unfortunately, I only gained this understanding from knowing someone with a disability. Our society doesn’t emphasize this side of disability – that people with disabilities are only people – no more, no less, and not much different from people without disabilities. I now realize that my anger was futile, but what else can I do? As a society, we fall short. How can one person change a whole society?
Honestly, most people mean well. I’m not talking about the Ann Coulters or the Rush Limaughs of the world (Relax – I don’t mean conservatives, I mean people who refuse to admit it’s wrong to use the slur “retard”), or the abusive educators or Eugenicists. I don’t refer to those who unapologetically choose hate. I am referring to the ignorant.
You see, in our society, ignorance has incorrectly taken on a negative connotation. To be ignorant is to simply not know. There is nothing wrong with not knowing, unless one is given the opportunity to learn and refuses. I don’t believe deliberate ignorance is the norm. On the contrary, most people are unintentionally ignorant – like me. There is so much I, myself, still have to learn; I certainly don’t want that held against me. I prefer for people to share their knowledge with me. I have an unquenchable thirst for understanding and I desire to grow as a person. I believe most people feel the same.
Then, how do I intend to alleviate ignorance? Simply by being not only an advocate for my daughter – but an ambassador, as well. To be both requires patience, thoughtfulness, and practice. I must calm that primordial, protective response and think before I speak. I am not, by nature, a “people person.” I am an introvert, but every day Evelyn and our family get out there, we provide an opportunity for society to see what life with Down syndrome is REALLY like. Every friend we make, every coworker, every person we come across is an opportunity to enact change. Each Cub Scout meeting, trip to the grocery store, and playdate is a chance for people to get to know us and our family – to put a human face on disability. I don’t approach the afore mentioned situations as conflicts; I address them as opportunities. This change in prospective provides the possibility to change the perception of my daughter which, in turn, improves her life. In order to accomplish that primeval goal of protecting her, I must quiet the instinctual response it inspires in me. If I am angry, aggressive, or admonishing, it will only serve to further alienate my audience by enforcing the perception that we are unalike. If I attack, they will defend. Instead of encouraging an adversary, I prefer to establish an ally. If I am patient, gracious, and friendly, common ground can be found.
Undoubtedly, there are some people who take comfort in their ignorance. It provides a false sense of superiority and security. These people won’t be swayed by a smile and a few carefully chosen words, but an angry barrage of how-dare-you’s is equally ineffective. I believe these people are the minority and most people will respond in kind if they are approached with an open heart and mind.
Therefore, I have decided to let go of my anger and treat people how I would like to be treated – with respect, kindness, and empathy. It’s harder than stomping around in jackboots, threatening wrathful vengeance (and maybe a little less fun), but it just might be more effective. Perhaps the way to encourage respect, kindness and inclusion for my child is to kindly and respectfully include others in my life. Instead of waging a war for social revolution, I’m engaging others in the conversation that is social evolution. I’ll let you know how it goes.
You can check out John Franklin Stephens, an amazing ambassador for social evolution, here. His ability to take the high road and speak thoughtfully and respectfully to someone who didn’t earn it is inspiring.