I Get Down

I felt this wave of mope hit yesterday.

It was partly just being in the city again – the lady who sat in her car and honked and honked and honnnnnkkkkkkkkkked some 10 feet away, and then yelled at us because she had to wait for Mikey. The guy who felt the need to waddle out and tell Mikey he could absolutely not park there, “you aren’t really a visitor”,  – but what I can’t convey in all this depiction of what happened is the tone of their angry voices. Nor how it felt to be so tired and at the end of our rope and struggling to make things come together and have these people so belligerently irate with us over things that feel So. Small.

It’s the traffic and the feeling that all of this precious time of ours – and I’m not talking about this trip, I’m talking about life itself – is being wasted in this metal box of a car universe, shuttling from here to there and really getting nowhere at all. Movement happening so slowly it feels like rancid molasses in winter. It’s movement without a feeling of authentic purpose.

And of course that makes me think of disability and when I’m a bad mood like I was, I just wonder what the hell this is all about. Jesus! Christ!

Do we on the disability spectrum not already have enough in dealing with day to day life in an inaccessible society? Do we actually have to work through this parent piece and parents that are so absolutely intent on seeing their kids with disabilities as the problem and NOT society?  Why can’t people get it that disability is a natural and normal part of the human experience? Why is that so hard to understand?

We are not talking about “overcoming” disability; we are talking about using our tools, about universal design, about inclusion from the ground up: it’s about all of us, with all of us.

It’s not just about Kim and Kanye, not just about those people that see, hear, move, think, feel, walk in ways that most people are familiar with. Not just about that lady who was honking at us, or about the people who believe in Jesus, Mohammad, Buddha, Zoroaster, Mother Earth/Father Sky. Not just about the people who use a wheelchair, not just about the people who don’t.

It’s about us all. Full stop.

So when my facebook feed is full of pieces like teachers caging children in the classroom, more death and killing of autistic kids, about parents saying their life is over because they have a “special needs child”, other parents saying that being a “special needs family” is so hard, I get pissed off.

And then I read posts about how these “special needs” parents get excluded just like their child does. Of course I understand that, and I think I might understand that better than a lot of parents complaining do – but I think we’ve simply got to be proactive about what we do, where we live, the choices we make.

We actually have enormous control in our lives (so long as we don’t believe the media). We have marvelous, grand choices to make with what we do with our time here. We don’t need to send our kid to that school, we don’t need to try and be friends with those people.

We don’t need to sit in traffic all day.

We don’t need to work at that job.

We don’t need to live in that city.

We don’t need that house that’s costing us every penny.

We don’t need debt.

We don’t need this overrated and underserving urban-ness.

But you know what we do need? We need to be still and listen to our heart, we need to create the future that we want for ourselves and for our kids: we are the artisans at the wheel in our pottery studio – no one else can tell us how to make our own clay bowl or knows the shape that will work best for our hands.

And maybe we need to stay off the social media a little more.

is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
She likes her coffee black and hot.
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  • Good grief! People can be such jerks! But, as I have learned in the last three days, there are people who go out of their way to do a kindness. You know those platitudes like, “You can’t have flowers without some rain.” I HATE people that say junk like that! You juggle my life and show me how everloving easy and perfect you can live my life!

    I think you ought to get a battle ribbon for keeping up with three! You have an amazing amount of patience. I have seen you, in person, put your kids down, serve them green vegetables, and put their dishes in the kitchen and watch in fascination as M. Comes out with a dishrag to wipe the table! I was blessed to have one child, but god/goddess spared me institutionalization. I know full well that if I had three like you, I would be in lockup somewhere! I can imagine me going off the deep end! I think you are awesome. Mope. Everyone is entitled to have some down time. Wallowing over several days is rather unattractive, but you seem to speed through your moods. You are probably already launched on some new project. It gets better. Unfortunately it gets better when they are about 25! But you will worry about them as long as you live.

  • Hi Meriah: I get what it’s like to be bombarded online with media stories about disability that are so negative and horrifying (and to see from a big picture perspective all these links between our cultural stigma about disability and the way they play out). But I think it’s unhelpful to tell people to stop complaining and get proactive. There are times when you, yourself, need to vent here about challenges that you face, and I can’t imagine that at those times you hope for comments like “pull up your boot straps lady and think positive.” When you talk about the isolation of families of kids with disabilities — and suggest that parents should just “find different friends?” That may look like a solution from where you stand, having a young child, but when your child is 20 and doesn’t have a single friend, and it’s not because you didn’t do the 101 things that you’re told to do as a parent of a kid with disability, or that you weren’t “flexible” as a parent in terms of who you choose as friends, you may feel differently. There are numerous studies documenting what happens to kids with certain types of disabilities in the teen years in terms of gnawing (is that a word?) loneliness, despite the creativity of their families. Should we just stop doing the research because we don’t like the results? That said, there are times I find following all of it online too much.

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