154. Fall Back

“Fall Back”

Pah. I hate the whole autumnal clock change thing. In Autism Land, that just means our kid is awake when the sun rises, so now it’s 6 am or whatever, and he’s all ready for school, but the bus isn’t coming for another two and a half hours. Right now, he is asking every twenty-three seconds to go for swim class, and it won’t be time to leave for another two hours.

My therapist had a really great idea: I had told him about how young men in Thailand have to be monks for some period of time, and he postulated that, instead of military service, countries with conscripted armies should have young people do support services for families with developmental disabilities. (We didn’t try to imagine how that would work for the US because the tendency to rush to bootstrap ideology soils everything that official policy touches.)

We sat with this idea of support services and built a whole fantasy world, and it was so awesome that I didn’t even want to emerge back into this one. I think that reluctance says a lot about how precisely under-supported a whole lot of us autism families are, and how that is our norm every day.

In this fantasy, people would be changed permanently by their work with our families, rather than becoming nobly ableist. They would become adults who were consistent allies in the disability world. They would vote in infrastructure that wouldn’t desert us when administrations changed. They would open up every activity to our kids and make it inclusive. They would not get angry or fearful in the presence of autistic people. The presence of our kids in public would be a joyful given. They would plan for autism to be in every sphere of life. They would not redirect every initiative, conversation, and crisis to their neurotypical selves and concerns. They would not exhort us to use positive thinking or religion to anesthetize what should be a society-wide issue. And they would sit down instead of centering their own voices. Listen more. Act with more humility and respect.

Autism is an immoveable piece in the lives of families like mine. We adore our kids, and our lives are what they are. If you do not believe that we are already doing everything possible, availing ourselves of every potential resource, and not in need of character building advice or inspiration porn stories from you, and that we actually need YOU to change individually and collectively, shaped by input from US, then we are at an impasse.

That impasse is why we have little to offer socially. And to fill the silence, people tell us to listen to their uplifting advice which we have not sought. I have been told so often not to give up on communal engagement, but in all truth, I am there. I would much rather spend my beans on the people who engage consistently with my child, and within the peaceful, accepting embrace of my own household.

It isn’t enough, though. I am unwilling to delve more into what should happen from here, mostly because discussions that turn into gaslighting hurt my heart, so if that means I am talking inside an echo chamber, so be it. My spirit needs that nurturing sometimes. I fall back into the spaces that hold me. I’ll stay here as long as I need to.

Radha.

4 thoughts on “154. Fall Back

  1. Carol, If you are open to a gentle course correction, I would like to address a couple of things.

    First of all, I want to thank you for reading so consistently, and for engaging with the ideas. That means a lot to me.

    Second, while I believe that we are profoundly shifted by working with, and developing relationships with the disabled, I also believe strongly that they aren’t here to change us and make us into better people. That is a side effect, and one that seems to matter pretty much so that society does justly by the disabled and does not deny them their basic rights—rights which should never be in jeopardy, yet always are.

    My purpose is always to center disability, and to learn to be a more effective, less ableist caregiver.

    I think we have a society-wide issue of seeing engagement with the disabled as charity; spiritual betterment; quid pro quo. We have to be vigilant about those tendencies in ourselves, and in any organizations we engage with.

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  2. I once worked with a young man who could not communicate in ways that the rest of us consider “normal”. He was blind and a quadriplegic. I was filling in for the woman who normally worked with him for a few short weeks. I learned so much from that young man and grew so much, emotionally, spiritually, and intellectually. I love your posts because they educate me, enlighten me, and inspire me. I love the fantasy that you have woven here – may it become our reality throughout this world of ours.

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    1. Thank you, Carol. I’m happy you had the chance to work with that young man. Recently I met a priest and his wife who sort of drew me out, then revealed they had had a son with multiple disabilities, and he had passed on. They talked about him with such tenderness; it still makes me weep to remember what an honor it was to hear about him.

      We are profoundly shifted by this work, and by the love that is born of applying our hands and souls to the daily tasks. It’s important that this shift not be confined to caregivers and family members. Otherwise precious little will change for our children.

      From your keyboard to the universe’s ear.

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      1. It really was such a huge blessing in my life. all life is precious and wonderful. It is these people who can teach us so much, if we are open to receive their wisdom and unique gifts.

        I also have a cousin who lives with severe disabilities yet is filled with such joy and zest for life that often puts me to shame for my petty complaints.

        Your child, and children like him are an opportunity for us to learn, to embrace differences and embrace them. We are, each of us unique beings with our own small gifts to offer. thank you for sharing your experiences. You are gifted writer and educator. You have made a difference in my world, as I am sure you have in the lives of many. I wish you and your family blessings beyond compare.

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