I received an incredibly beautiful and inspirational mail from a former client this week. It made me cry a few tears of joy and do the happy dance. It also made me think. Before we discuss it further, here’s the email – it’s written from the perspective of her one year old daughter, followed by a note from her mother.
Gia Joy in full on teaching mode.
“Hi, my name is Gia Joy. I came into this world almost a year ago and have had such an amazing year! I chose the perfect family to support me on my journey. I threw my parents for a loop when they learned I was different but I knew they could handle it! I am perfect, my body just works a little different than most peoples’. The docs have defined my body as having SMA, spinal muscular atrophy. I define my body as perfect! I am normal, my normal is just different than your normal. My parents are learning how my body works so they can help make my environment more comfortable for me but I know that everything is going to be fine and I am so excited for the life I am going to live! Life is awesome! My life is perfect and I am truly happy. I am excited being here just the way I am because I get to teach the world how being different is amazing and that I can do anything, we all can! Because after all, aren’t we all different? And we are all perfect! I know how awesome I am, do you know how awesome you are?”
“I wrote this from my heart after not knowing how to respond to people who would say they were so sorry for the diagnosis, or SMA sucks, or how I must be so devastated, or poor, poor Gia, or I knew something was wrong with her. Because that is not how I feel at all. I am not sad. I am truly happy to be able to live in this amazing world with her just the way she is. She’s awesome! I feel lucky and she’s teaching me so much.
I hope we are able to inspire others to see the world a little differently 😉
Big hugs xx
So, there you have it. I couldn’t have said it better myself. Little Gia Joy, with her bright and shiny light, has come to teach us all how to connect with our own, innate perfection. I’d say she’s coming out of the gate strong! She’s barely a year old, and is already getting thousands of people to talk about her (via this blog, for example). Wooohooo!
Why she’s so right
One of the reasons that this message, and messages like this, resonate so strongly with us, even brining up tears as well as fist bumps and high fives and happy dances, is because little Gia Joy is recognizing her own value, and by expressing it as such, giving those around her permission to recognize their own value, as well. And boy, could we use more of that, especially when it comes to how we engage with our kids.
I love to observe humans, large and small – how they interact with each other, how and why they react the way they do, what triggers them and why, etc. I’ve come to realize that children, in particular, are amazing teachers, especially when it comes to our control issues. If you are fearfully focused, if you trust more in the idea that things will go wrong than that they’ll turn out well, your kids, large and small, will dance around on that nerve until you can’t take it anymore. They’ll become riskier; they’ll stay out later; they’ll drive erratically; they’ll do all kinds of things that have you wondering if they have a death wish. They don’t. But they would rather do something dangerous than succumb to the idea that they are doomed. They would rather jump in a lake of fire than live their lives full of learned fear. They would rather lose control than be controlled.
“Special needs” kids take this teaching up another notch. You can try to discipline a non-special needs child into conformity, but you can’t yell at an autistic child, or a Down’s syndrome child, or a child with MS long or loud enough to make them change their ways. Nor would most people try. These kids cause us to set different expectations – if a child can’t physically follow you, you will not yell at them to do so. If they can’t psychologically pay attention to you for more than 5 minutes, you no longer try to change that with discipline. With these types of teachers, it’s not the kids that conform to the standards of the parents, it’s the parents who conform to the standards of the kids. And wouldn’t you know it, the kids’ standards are much more aligned with who we really are.
What they’re here to teach us
When we engage with a “special” child, we so often realize a level of compassion we didn’t even previously know we were capable of. We have more patience. We accept that our way is not the only way; their way may be just as good, and much more valid for them. We accept that we cannot simply bend them to our will. We let go and allow ourselves to connect on a much deeper level.
As the lovely Gia Joy pointed out, we also begin to redefine what’s “normal”. Why is having two functioning arms and two functioning legs considered normal, while missing one or more of those is less normal, abnormal or considered a disability? Why is a physical challenge a disability, while an emotional one is not? If you are a sociopath, are you not much more disabled than someone who may have to get creative when he wants to climb stairs? And how is overcoming a physical (and I’m lumping disabilities which are thought to be caused by brain abnormalities into the physical category) challenge so much more inspiring than triumphing over emotional issues?
When we see the Paralympics, we tearfully cheer as a runner with two prosthetic legs sprints across the finish line. “Look at all he had to accomplish!”, we say. “Look at how much he had to overcome!” And then we briefly look at our own lives, and say a quick prayer of gratitude for all we have. And sure, this can cause us to see our own issues in a new light – after all, if the dude with no legs can do it, then what do we have to complain about, right? But there are a few issues with this view.
First of all, we can’t truly identify with someone who has a life so different from our own. We don’t honor people overcoming challenges – otherwise we’d celebrate the guy who overcame a crippling emotional issue just as much as the sprinter with no legs. We are inspired by those who face challenges we can’t possibly even imagine. We’re often not so inspired by someone who overcame the thing we’re currently struggling with. It tends to actually make us feel worse (if we’re not ready to shift the resistance). We want the triumphant person to be different, that way we never have to do what they did. We can stay small.
Second, and I know this is going to sound a bit ugly, when we cheer on someone who has triumphed over something we can’t really even identify with , we’re grateful that it’s not us. We’re thankful that we don’t have it as hard as this poor bastard does. We’re inspired by what he’s accomplished, but deep down, we don’t think that we could ever do the same in his position.
And with that view, even though we think we’re praising them for being so brave (because it apparently takes bravery to get out of bed every morning in their terrible condition. I mean, if it was me, I wouldn’t be able to leave the house. Ever. And yes, that’s sarcasm), we’re actually diminishing them. We’re actually being incredibly condescending. We’re not honoring their journey as perfect for them. We’re saying that something has gone wrong, that their lives would be better if only they were “healthy”. We may yell a well-intentioned “good for you!”, but what we’re really saying is: “Good for you for overcoming all that hardship and prejudice and judgment and doing something worthwhile with your life anyway. Good for you for not just crumbling into a useless pile of misery, the way society pretty much expects you to (and the way I’m afraid I would if I were you). Good for you for daring to believe in yourself, for daring to think of yourself as “normal”, for just going out and living your life as if you had a perfect right to, you know, just because you exist.
I’m sorry, but I have to call bullshit. Of course, people mean well, and these comments come from a good place. So, what’s wrong with being inspired by someone with less than the average number of limbs getting out of bed? Am I saying that it’s a bad thing to cheer them on? Well, yes and no.
You see, it’s fine to celebrate people’s accomplishments. When they set themselves a big goal and meet it, we can certainly genuinely be happy for them. But, when it’s special to us that someone has done an everyday activity that the rest of us take for granted, it usually means that we kind of had the expectation that they couldn’t and/or wouldn’t do it. We’re looking at them as though they are less capable. Ok, maybe they can’t get out of bed the way that we get out of bed, but so what? We only get out of bed the way we do because we were taught to. How is it more difficult for a kid with no legs to learn to get out of bed? It isn’t, unless you expect him to do it exactly the way his brother who has two legs does it.
When your kid dresses himself for the first time, cheer him on. When you see a grown man do it, don’t make a big deal out of it, even if he’s missing a few limbs (unless you’re his physiotherapist and he’s doing it for the first time). Chances are, he’s been dressing himself for years and it’s just an everyday activity for him. Hearing how brave he is for doing something we all do isn’t going to make him feel good. In fact, it can send the message that this is a huge accomplishment for him. Allow him to dream bigger. Way bigger.
Our unique challenges make us great
Here’s the problem: We’ve become so enamored with conformity, that we expect everyone to do everything the same way. We don’t allow for different body configurations, different abilities, different brain chemistry, different ways of learning and thinking and problem solving. When see a woman with no arms struggling to pick up a dropped piece of clothing, we assume that she needs help. After all, she can’t do it the “normal” way, so whatever else she can do will not be as good. But what if we could acknowledge that this is HER way, and that she will ask for help if and when she needs it? What if we came to understand that someone doing something vastly different from us is not worse in any way, it’s just different? And what if we acknowledged that what we’ve seen as disabilities are actually the catalysts to finding various ways of doing things? And what if we finally fucking realized that finding loads of different ways to do and look at things, is an incredibly valuable thing?
How does a person with some “condition” see the world? What might we learn from their perspective if we took the time to listen, not from a “poor them” point of view, but by connecting with them as an equal? What if we learned to respect all abilities, all variations and blessed them as equally valid?
This is what I believe many of these kids have come to teach us – they are here to show us their value, and remind us of our own in the process. They are here to destroy our old definition of the word “normal” and redefine it. They’re here to show us that a child with special needs can set much bigger goals than “learn how to tie their own shoe laces”. They can be anything they want to be. They can become business owners and employees, artists and accountants, dancers and martial artists, parents and politicians. In short, they can be anything they want to be, not just what we think they should be grateful to settle for. And of course, so can we…
Can you imagine?
Can you imagine a world where parents of a “special” child will no longer be told “I’m sorry” by the doctor, but rather “congratulations!”?
Can you imagine a world where we don’t see those who are differently abled as limited, but trust them to figure it out in their own way?
Can you imagine supporting them in that process, rather than trying to figure it out for them and giving them our solutions?
Can you imagine a world where children come home and proudly tell you about the differences they discovered within themselves and others that day?
Can you imagine them beaming with joy and appreciating each difference, rather than being ashamed of it?
Can you imagine an education system where finding a new way to come up with the correct answer is praised, rather than discouraged?
Can you imagine a world where everyone is welcome and accepted and honored and respected, no matter how rich or poor, how young or old, how productive or not, how “normal” or weird?
Can you imagine a world where we all fully accept ourselves and others, and where that is the new normal?
Can you imagine a world where each of us shines our own unique light, fully, completely, confidently, without abandon, and we all light up the Universe together?
I can. So can Awesome Gia Joy and her mommy. Can you?