Friday Morning Reflections

It’s 8:56 am. My children are all gathered watching the new season of Magic School Bus. The teenagers orbit around the edge of the room pretending they are less invested than they are. The sun streams warmly in the window…for now it isn’t giving me a headache. My pain levels are tolerable, what ever that means. Milton will be home soon. My social network ebbs and flows, as they do. For now I do not feel like a burden. It’s peaceful. 

Yesterday we got several pieces of bad news, two of which could have long term negative impacts on our lives. My pain is better right now but my asthma is much worse. I had every intention of writing a lot for autistic acceptance month but autistic burn out has left me struggling to frame thoughts in words at all, much less once or twice a week. I stayed up late last night worrying. My nesting partner is worried as well, depressed and frustrated. We’re both frustrated. exhausted. 

But right now these children are happy, we are fed, we have a home, and all is well. well enough. 

We don’t need or want anyone’s pity, no saucer eyed proclemations of “you’re so brave”. We work impossibly hard for these little moments. We just want to enjoy them, to have the ability to rest now and then. We want to live. It shouldn’t be this hard. 

but it is.

Rest 

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So it’s Autistic Acceptance Month

Which generally means that a lot of actually autistic people, both adults and children, are getting the message that they are pitiable burdens blasted at them incessantly. It can be extremely stressful and depressing.  A lot of us, avoid our support avenues, like social media out of necessity…or are unable to let go without and are repeatedly triggered into deep bouts of anxiety, depression, and autistic burn out which can and does usually greatly reduce our quality of life and ability to cope in a world already not built for us. 

It is pretty common NT(neurotypical) compatible parenting practice to make sure not to accuse our NT children of being bad or a burden. That we are mindful in how we phrase our normal parenting frustration, irritation, and yes even anger, avoiding framing our feelings, as an accusation that the child would likely internalize as being their fault. That we take responsibility for our own feelings as parents, and work to not weaponize those feelings as punishment for our children,because we know weaponized shame and anger can do real long term emotional damage to a person. 

Yet somehow this seems to go out the window for certain parents of autistic kids. 

Look no one is saying any care giver can’t have feelings about the intense amount of largely thankless labor that goes into parenting children. I don’t think any of us were truly prepared for how much parenting is. It is a lot, just so much. Sadly in this day and age, non-men often shoulder that burden mostly if not entirely alone. Also our culture’s focus on nuclear families has served to further isolate us from the sort of small tight knit communities we are probably best adapted to. To make matters worse our culture does not over all value the life of nuerodiverse and disabled people, we are across the board expected to struggle and suffer when other abled people would be given benevolent accomodation at the very least.

so yeah, parenting is hard and exhausting, and so much more than we expected. No one is asking you to deny that, no one is expecting you to be a damn robot, all we are asking you is to treat us like human damn beings, treat us with some respect, to not blame us for a cultural lack that we did not create, are not upholding, and are more directly harmed by then caregivers are. 

We are asking parents and caregivers to not weaponize their normal life frustration as being our supposed fault for exhausting them with our wrongness. If it is so exhausting for them to parent a child in an ableist world that is not made for us and punishes us for simply existing, imagine how exhausted we must be, being the actually autistic people in an ableist world who have to directly deal with a culture that does not want us. Imagine how it might feel if in that ableist world,the people who are supposed to be your closest confidants, support network, and family constantly looked at you with blame and accusations rather than the support and allyship you desperately needed. 

It’s heartbreaking and alienating and every fucking day. 

Autism Acceptance is what the autistic community has named as needed, to teach the world how to understand and accommodate us more fairly and humanely. It helps us to live…and it would help them parent their autistic child as well. 

Surely that at least should matter even if they steadfastly believe their child will never grow up to be us. 

#redinstead

Autistic Acceptance Month

Coping in the Meantime

Winter is a hard lean time for many chronically ill and disabled people, for many environmental, physical, and personal reasons. It’s no longer the depth of winter in this part of the sphere we call home but that doesn’t necessarily mean all of us are magically better. 

Boom. I wish. 

Season changes can be a difficult time for many of us as well for many different reasons. For some people rapid weather changes can impact their pain levels, cause loss of mobility, aggravate secondary or co-morbid conditions, or cause chronic illness flares when we are already in a weakened and depleted condition, adding days or weeks to our recuperation time. 

Even if enviromental changes don’t aggravate our conditions, our recuperation times are often painfully slow, we may be treading water in a limbo of slight relative improvement even by our own personal standards for much longer than we can really bear. Spending days or weeks feeling better, but knowing that sense of “better” is to delicate and new to have any practical function can be exceedingly frustrating. 

So here I am in the long weeks of feeling better…but not really better. Since this winter, when I caught a cold that kicked off a domino effect of asthma, pain, and chronic illness flares, I have been a ghost in my own home.   Borrowing against future spoons just to function at parental survival level, keeping my kids fully cared for while my partner was at work and only existing in a pain and brain fog stupor when he was home. 

so now things are a little better, my pains have faded a bit to tolerable dull moan, plus a constant full body “restless leg” irritability, as well as daily (rather than constant), sharp pains of joints not lining up right or generally not working quite as they should. My fatigue has faded from unable to function at all unless under duress to constantly exhausted, mildly foggy, and grumpy. I am so tired right this second, my shoulders feel resentful that they have to persist in being held higher than my feet. so tired. I am living in pea soup and I know it. I want out. 

This is overall a big improvement except the fact that most of my relatively freed resources are just enough for me to have more time and energy to think about my ever growing to do list. The pressure feels monumental to get everything I haven’t been able to do for months, done now. Spring cleaning, entertaining and enriching bored toddlers with cabin fever, homeschool, starting a business with very little in terms of network or resources, trying to make new revenue streams so we can maybe live under a little less pressure, careful budgeting of spoons so that I don’t lengthen my recuperation time out of obstinance, and internalized ableism always lurking behind my right ear with it’s insistent whisper of “not enough” always make this time of year extra frustrating for me. 

So here I am reminding myself, and you too if need be

That it is ok. 

If all we have to give right now is 20%, 20% is 100%,because that is all we’ve got right now. 

That there is never anything wrong with giving what we have to give. There is never anything shameful about not having more to give, *even* if we may have it to give at a later date or in a different environment. 

Today we can only offer what we have today

Let’s try and be a little easier on ourselves for not yet having future energy or ability in stock today. 

I know it is a process, I won’t be able to change my thinking immediately and that is ok as well, but I’m going to work on it. Learning to forgive myself for not being able to do the impossible is as important as learning to not hold the impossible against other people. 

Today is not Tomorrow, and that is ok. 

Repeat until we believe it. 

Otters and Other Mythical Creatures

I think about otters

no one forces an otter 

otters are just otters

otters just live

————-

I think about living a life with out the sweaty milk sacks 

now that’s poetry. 

milk sacks. spigots.

I’ve got a million euphemisms 

let’s just tone that gendered term down friend 

soften the blow a bit

they have given life though

nurtured life

power, grace, and magic irrefutable

I am thankful for this gift

even as I am being dragged kicking and screaming into your 50’s house wife fantasy.

*I Do Not Consent To This!*

I scream into the void 

but no one is listening 

or no one cares

*I do not consent to this body* I whisper

small.desperate. an eternity of tired

still

The entire world leans in

cheerful.helpful.

and offers me a cough drop and half of a flat soda.  

forever missing the point

Barefoot On Stone

Guest post by Milton Goosby 


The “black queer” cannot claim an ontology outside of blackness….
The “black queer,” then, is a catachresis. The problem I am laying out here is not merely the impossibility of folding the black queer into humanity (humanism) or the ‘community’ of objects (internal exclusion), but whether the injury directed at this being is registered as anti-blackness at all. The prevailing problem is that the injury sustaining this catachresis is so incomprehensible that it is doubly erased, and this is what I will call

‘onticide.’
– Calvin Warren

Onticide

Afro-pessimism, Queer Theory and Ethics

_____________________________________
I am a nonmonogamous, enby, queer black fugitive. Love and acceptance, as it has been taught from a colonized perspective, damn sure don’t love and accept me.
Accepting my queerness has taken all my adult life. Being accepted is a work in progress. I don’t fit within the greater LGBT community with ease.
I have passing privilege, am male presenting, older. I also have two biracial children with my white, transmasculine, nonbinary nesting partner. As neither of us pass we are coded as a straight, albeit strange couple. We have to orbit the nebulous prefixation that has bound the gay community into particulars.
Daily shedding the sickly skin of misogynoir, battling to use the perception of my masculinity and the privilege it affords to provide space for my newfound non-men, NB and transguy comrades, I have effectively alienated myself from most of my long time friends.
—-

Bodies, Space, and Spectrum IV (unfiltered)

—-
This was expected, still I worried over the idea of losing that acceptance once I decided to be more public about being queer. I worried about the silence from my family turning to ostracization. I worried that excising pieces of myself meant the whole of me sliding into Oblivion.
I discovered that my various intersections all ran amok of what is acceptable.
Unspoken hierarchies became clear. I discovered that my relationship status along with my presentation was subject to scrutiny. I understand and agree wholeheartedly, considering our perilous relationship with Eurocentric settler Socialism and state violence.
We speak on it through social media daily. The multitude sings to keep the fire going.
I continue to do the work, putting all my energies into writing missives that will stoke these radical fires already burning. Not tossing my relationship around as if it, in itself, is an act of resistance.
Blessings to the myriad, majestic, multitude of bodies that push at the boundaries of queerness.
Gender, like love as we know it, is a spector of colonial settler politics.
Disidentifying with the stereotypes that have been used to ground white male fears about black super masculinity has made me even more vulnerable to the fractitious machinations that are currently rooted in capitalism. Side note, I gladly revel in the strength of my ancestors. My presentation has not changed all that much throughout my life Revelations.
While dodging the hunt at each turn, I have also learned to glide, strut, stay sexy, speak what I know, shut up and listen, love the multitude, be unapologetic about my stance.
I seek to distangle the self from colonized gender perspectives. A spiritual and psychological reformation that will allow me to reconnect with the ancestral norms that Eurocentric supremacy has effectively erased.
Black queerness for me means a heightened state of awareness. I’m not a placeholder for fetishes, affirmation of the merits of how well I can integrate into society.
This society was not built to accommodate or contain me. My very potential is a threat.
Blackness as negation of whiteness. Queer outside the bounds of acceptable or easily categorized blackness.
And I’m good with that.
~~~~~~~~~~~~~~~~~

Milton Goosby is a queer, pansexual, self gender disavowing author, parent and partner.
He loves unabashedly, is a sometime gamer who enjoys hard sci-fi and being black af. You can often catch him online, walking his two toddlers up to the local Bodega for snacks and Redbox or waxing philosophical.

Keep up with Milton’s work via his public Facebook page or his blog Confessions of an Urban Shaman.
You can become a patron or make a one time contribution via PayPal.

Living Between Hope and Hopeless

I’m alive

for tonight 

for today

I’m alive and my feet hurt

I’m alive and my body burns, existing at 90 degree angles from itself

I’m alive and they dismantled the ADA

I’m alive and I don’t know what the future holds 

I’m alive but my insurance may partially cover gender confirmation surgery and hormones 

I’m alive and there’s no way to make that last line flow nicely 

so I’ll just say

I’m alive

Chronic Illness Feeling Number Whatever

On the verge of a really big bad, I can’t move and everything is on fire flare. 

not quite though…
instead i feel like freezing cold mud. 
My muscles burn as if after anaerobic excersize 

it is an empty, sputtering, cold, cold burn.
My muscles, so weak and slow
struggle mightily and weakly, an old overheated computer, slow 
-buffering- buffering- buffering-  
every cell in my body surrounded by cold sloughing muck, 
neurons firing through thick sludge. 
a difficult and slow journey. 
The mud drips and oozes 
my muscles are melting.  
i struggle to hold this form 
to not melt away 
and drift into nothingness like a half remembered memory