Sometimes I wonder what the point of blogging about disability is. It just feels like being in this really small church, preaching to this really small choir. All we do is circle the same words and see who can say it in a different way – but it’s the same old, same old.
The people that we are really talking to – that we really want to reach – why, they are dancing it up over at Miss Kitty’s or Club Yellow. Or maybe they are just over at a different church, the one down the lane and over the brook.
Point being, it all feels kind of dumb sometimes.
It feels like we are just re-phrasing and talking about the same stuff to the people that don’t need to hear it.
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I was really scared Mack would be autistic. Man, that would be just my luck, I thought. But somehow I remembered all of the many, many blog posts that I’ve read – by both autistics and parents of kids on the spectrum. Remembered too, the people with autism that were part of the program that I once worked on, and I had to believe that what everyone was saying was true. Believe it in the same way that I deeply hope you all believe ME when I say hey, my life doesn’t suck.
I’m deaf, YES, I can’t hear much without hearing aids, NO. People think I have an odd fixation with mouths, YES because I have to lip read like there’s no tomorrow. I don’t hear even a fraction of what people say to me on the street – and my choices are always about asking people to repeat themselves 50 million times or just pretend I heard them and work off of their body language. My kids are going to grow up enunciating like people who spent FAR too long teaching English in Asia, YEAH but does that make my life less? – I don’t think so. Maybe it’s just me being wrapped up in my world though.
The bottom line for me is this – and I’ll try to keep it short because it’s Friday and all – is that we have to believe each other’s stories. For any of this to have real meaning, we have to take the dive and leap and trust in each other’s truth. When my friend says that having a kid on the autism spectrum really isn’t at all something to be scared of, I need to believe that in the same way I hope you believe me when I say that it makes me laugh to think of anyone being scared of deafness!
We need to listen to what we are all saying here, the bits and pieces between the lines as well as the lines themselves. Learn from one another and apply that to
a life that honestly believes that disability is a natural and normal part of the human experience.
Learning about our differences is just as neat as it’s always been to pick up a National Geographic magazine and read about people in various areas of the globe that eat, talk, walk and/or communicate differently than we are accustomed to.
We need to learn from each other. Believe in our own stories. Trust in each other’s truth.
Otherwise, we really are just a little church preaching to a little choir.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
“We need to learn from each other. Believe in our own stories. Trust in each other’s truth.”
Tell that to Andrew Solomon. I got the distinct impression after reading Far From the Tree that he believed that we believe it’s not that hard/bad/different, but he doesn’t quite believe that is the “truth.” Maybe you have to live it or live something like it to believe it.
The other advantage of blogging about disability is that is helps us to formulate our opinions and beliefs so that when we encounter someone (person or larger entity), we are more prepared to lay out a solid argument.
Hi Meriah — I think you’re right about needing to believe each other’s stories.
It does always come back to this feeling of us not having enough courage, or enough of something, to be able to deal with a certain kind of disability.
I’m sure there’s part of us that inwardly feels grateful we don’t have to deal with a certain type of disability, or with multiple kids with disabilities. It’s a coping strategy.
And yeah, I know what you mean about feeling like we’re just blogging to people with very similar views. That’s why I continue to hope that mainstream parenting forums will increasingly include our voices as being part of the parenting spectrum.
Have a great weekend!
I can’t tell if who is hugging harder; this post hugging me, or me hugging this post. Either way, I’m holding on tight to every word.
As a new mom, this blog rocked me in such a good way. I was so scared of what Down syndrome would mean to my life, to my child, what would she would like, just tons of fears because it was so UNKNOWN. When I stumbled upon your blog (along with Holly’s) I felt like I had come home. I felt SAFE. I felt like I could do this and do it well. That my life would be happy. And so far so good. Jude rocks. She’s a baby. She’s cute. She’s awesome. She had Down syndrome. Blogs saved me from despair, and I SHARE them with everyone LOL. But seriously you’re so right…keep preachin.
Argh has Down syndrome…nursing and typing do not go so well together.
For those of us to lazy to blog, reading your blog gives us hope that you are reaching out to all the new families that need you. Plus who could resist the cutest little girl and baby boy?? I for one appreciate your preaching. Your perspective is so very different from mine, it keeps me on my toes…..
Thanks for reminding me not to drift away while the preacher is preaching.