day in my life

I was asked to write something that would ask disabled people coming to CCA who didn’t have chemical injuries to do the solidarity work of going fragrance-free for the gathering so that people whose disabilities meant that chemicals and fragrances made them sick would be able to attend. This was a particular, specific kind of access work, as part of the work involved my talking about fragrance and chemical access in a way that centered Black and brown people—to be specific, getting people to think of chemical access as not some weird shit only particularly annoying white vegans cared about but reframing it as something that Black and brown people have, due to everything from cleaning houses and working with pesticides to living in polluted cities, from having asthma to cancer. And to not only get people to reframe chemical disabilities form the whitewashed way they’d often been discussed but to provide a list of body and hair care products that were cheap, easy to get or make, and worked on Black and brown hair and skin. That last part became one of my most-used resources: “Fragrance-Free Femme of Color Genius” (formerly “Realness”), a compendium of products made with all my Virgo moon hyperfocus research skills.

But this piece picked up steam and got passed around in ways I hadn’t expected. I guess writing about access as a form of radical solidarity called love hit a nerve.

When I think about access, I think of love.

I think that crip solidarity, and solidarity between crips and non(yet)-crips is a powerful act of love and I-got-your-back. It’s in big things, but it’s also in the little things we do moment by moment to ensure that we all—in all our individual bodies—get to be present fiercely as we make change.

Embedded in this is a giant paradigm shift. Our crip bodies aren’t seen as liabilities, something that limits us and brings pity, or something to nobly transcend, ’cause I’m just like you. Our crip bodies are gifts, brilliant, fierce, skilled, valuable. Assets that teach us things that are relevant and vital to ourselves, our communities, our movements, the whole goddamn planet.

If I’m having a pain day and a hard time processing language and I need you to use accessible language, with shorter words and easiness about repeating if I don’t follow, and you do, that’s love. And that’s solidarity. If I’m not a wheelchair user and I make sure I work with the non-disabled bottom-liner for the workshop to ensure that the pathways through the chairs are at least three feet wide, that is love and solidarity. This is how we build past and away from bitterness and disappointment at movements that have not cared about or valued us. When I’ve said this, some people have reacted in anger, saying that disabled folks shouldn’t have to be loved to get access. They argue that we should simply have our rights under the law, as disabled citizens, respected. For me, this is an excellent example of where disability rights bumps against disability justice. A rights framework says that the ADA and other pieces of civil rights legislation give disabled “citizens” our rights: we simply state the law and get our needs met. Disability justice says: What if you’re disabled and undocumented? What if you think the settler colonial nation we live in is a farce and a hallucination? What if you don’t have money to sue an inaccessible business? What if the people giving you accommodations and access technology—or not—are not paid for by the state but part of your community?

I agree that our access to access and the world should not be predicated on desirability or popularity or approval of the able-bodied masses—or anyone. And I hold a deep place of respect for the ways so many of us have been denied access to love. But when I say the word “love,” I mean something more cripped-out and weird than the traditional desirability politics many of us are forced to try to survive and live within.

I mean that when we reach for each other and make the most access possible, it is a radical act of love. When access is centralized at the beginning dream of every action or event, that is radical love. I mean that access is far more to me than a checklist of accessibility needs—though checklists are needed and necessary. I mean that without deep love and care for each other, for our crip bodyminds, an event can have all the fragrance-free soap and interpreters and thirty-six-inch-wide doorways in the world. And it can still be empty. I’ve been asked to do disability and access trainings by well-meaning organizations that want the checklists, the ten things they can do to make things accessible. I know that if they do those things, without changing their internal worlds that see disabled people as sad and stupid, or refuse to see those of us already in their lives, they can have all the ASL and ramps in the world, and we won’t come where we’re not loved, needed, and understood as leaders, not just people they must begrudgingly provide services for.

I mean that the sick and disabled spaces I have been in, been changed by, helped make, stumbled within at their best have been spaces full of deep love. And that deep love has been some of the most intense healing I’ve felt. It is a love that the medical-industrial complex and ableist society don’t understand. It’s why doctors scratch their heads and remark that I seem to be doing so well, and then stare blankly when I say that I have a lot of loving disabled community and it’s what helps me. It took ten years to begin to not hate my bodymind. It took ten more to even begin to be able to ask for what I needed, matter-of-factly, without shame.

I mean more. I mean things like the radical notion that everyone deserves basic income, care, and access. Everyone. Including people you don’t like. Including people who are not that likable. I can think of people who have, frankly, acted like assholes and hurt people in my life, or me. Some of them I have still sent twenty dollars, when I had it, to their Indiegogos when they got disabled and needed money for rent, food, housing, or to move to a more accessible apartment or city. Because nobody deserves to die or suffer from lack of access, even if they’ve been an asshole. I have seen some people doing the best DJ work possible, holding practices of, say, inviting everyone to their Friday night dinner—including people seen as cranky, unpopular, or difficult—because the most cripped-out folks were the most socially isolated and needed it the most.

Many of us who are disabled are not particularly likable or popular in general or amid the abled. Ableism means that we—with our panic attacks, our trauma, our triggers, our nagging need for fat seating or wheelchair access, our crankiness at inaccessibility, again, our staying home—are seen as pains in the ass, not particularly cool or sexy or interesting. Ableism, again, insists on either the supercrip (able to keep up with able-bodied club spaces, meetings, and jobs with little or no access needs) or the pathetic cripple. Ableism and poverty and racism mean that many of us are indeed in bad moods. Psychic difference and neurodivergence also mean that we may be blunt, depressed, or “hard to deal with” by the tenants of an ableist world.

And: I am still arguing for the radical notion that we deserve to be loved. As we are. As is.

At the risk of seeming like a Christian, or a Che Guevara poster, love is bigger, huger, more complex, and more ultimate than petty fucked-up desirability politics. We all deserve love. Love as an action verb. Love in full inclusion, in centrality, in not being forgotten. Being loved for our disabilities, our weirdness, not despite them.

Love in action is when we strategize to create cross-disability access spaces. When we refuse to abandon each other. When we, as disabled people, fight for the access needs of sibling crips. I’ve seen able-bodied organizers be confused by this. Why am I fighting so hard for fragrance-free space or a ramp, if it’s not something I personally need?

When disabled people get free, everyone gets free. More access makes everything more accessible for everybody.

And once you’ve tasted that freedom space, it makes inaccessible spaces just seem very lacking that kind of life-saving, life-affirming love. Real skinny. Real unsatisfying. And real full of, well, hate.

Why would you want to be part of that?

So when you work to make spaces accessible, and then more accessible, know that you can come from a deep, profound place of love. And if you can’t love us, or love yourself—know that the daily practice of loving self is intertwined with any safe room, accessible chairs, ramp. Both/and. When they are there, they show our bodies that we belong.

And

the amount of backhanded comments I'd heard from my irl friends about how they really like the times where I wear things other than sweatpants and hoodies and I should really work on creating my own style is insane

My orthodontist tells me I can make an appointment with the surgeon. I call the surgeon. They tell me I need a new referral. I call the orthodontist. They do a referral. I call the surgeon. Referral didn't come through. They tell me about their special unique system we have to use. I call the ortho again and walk them through the referral. I call the surgeon. They say the referral was missing some details so they have to do it again. I call the ortho.

The insurance company calls me about repair shops. I give them the name of the repair shop which I already gave them yesterday. They say they're not in their system but I can use them, but I have to call the repair shop to ask them to contact the insurance company. I call the repair shop and they say the insurance company is supposed to email them.

Image description: A screenshot of the symptoms of 'factitious disorder,' from the Mayo Clinic. The symptoms are listed below alongside my discussion of them.

This is the 'condition' that used to be known as Munchausen's.

I am not claiming that nobody ever fakes being sick. But it is vanishingly rare compared to the number of people who ARE sick, but doctors refuse to take it seriously.

Let's take a look at some of these. How can they tell if the medical problems are 'clever and convincing' or just... real, if it's one of the hundreds of conditions that don't show up in a clean cut way on imaging or labs ?

'Deep knowledge of medical terms and diseases' is much more commonly a symptom of being forced to do your own research because doctors refuse to help you figure out what's going on. I have deep knowledge of certain medical terms and diseases. Wish I didn't have to.

'Vague or inconsistent symptoms' - you mean like those that occur in, once again, the many conditions doctors like to ignore and dismiss because clear objective diagnostic measures don't exist yet? Like they did with multiple sclerosis before they invented the MRI?

'Conditions that get worse for no clear reason' - sometimes the reason is pretty clear! Medical neglect! And many conditions worsen for no obvious reason. Do they not understand the concepts of progressive,' 'degenerative', or 'relapsing-remitting'?

'Seeking treatment from many healthcare professionals' - it's almost like if a doctor dismisses your symptoms or refuses treatment you might need to look for another?

'Not wanting healthcare professionals to talk to family or friends' - Many chronically ill people live in abusive situations and/or with people who do not believe they are sick.

'Staying in the hospital a lot' - Because you're sick and no one will provide appropriate treatment outpatient. Because they don't believe you. So it escalates to hospital severity.

'Desire for frequent testing or risky surgeries and procedures' - It's almost like people want to find out what's wrong with them? And get treatment for it even if it has risks?

'Many surgical scars or evidence of many procedures' - Sure yeah let's just demonize people for having had medical care. Alright.

'Having few visitors when in the hospital' - Yeah, definitely if a chronically ill person experiences social isolation or abandonment they must be faking. We definitely don't live in a culture that isolates sick people.

'Arguing with healthcare professionals and staff' - And this is the one that inspired my addition to this post. G-d forbid we know anything about our bodies or advocate for ourselves.

Someone I care about very much was recently 'diagnosed' with this despite massive evidence of life threatening, untreated medical conditions. This diagnosis can kill people.

Image: Mayo Clinic screenshot, overview of 'somatic symptom disorder.'

"Somatic symptom disorder involves focusing too much on physical symptoms such as pain or tiredness. This focus causes major emotional distress and makes it hard to function. You may or may not have another medical condition that causes these symptoms. But how you think, feel and behave because of the symptoms can be extreme."

"You might often think the worst about your symptoms. You may seek medical care often, searching for a reason for the symptoms, even when other serious conditions have been ruled out. You also might spend so much time and energy focusing on your symptoms that it's hard to function, sometimes leading to more challenges in your life."

So... if you find your symptoms of an actual real diagnosed medical disorder 'too' distressing, seek 'too much' medical care, and want to find out why you're sick, they can just diagnose you with 'Never take this person's medical problems seriously again disorder'.

The 'even when other serious conditions have been ruled out' part is especially absurd. Which other serious conditions? Sure, if you hear hoofbeats, think horses, not zebras - rule out the most common possibilities first. But if you're still having symptoms that don't fit your existing diagnoses? Then yeah, you might want to rule out less common causes!

And the idea that it's not the symptoms themselves that cause the problems, just that you spend too much time focusing on them... I've noticed a strange phenomenon in my personal experience where I spend a lot less time and energy focusing on my symptoms when they are treated to the point that they aren't severely debilitating. Idk, maybe that's just me.

And the symptoms list... how do they not hear themselves?

Image: List of symptoms from same Mayo Clinic page.

Symptoms of somatic symptom disorder may include:

Specific symptoms, such as pain or shortness of breath.

General symptoms, such as feeling very tired or weak

Symptoms not related to any medical cause.

Symptoms related to a medical condition but that are more severe than usually expected.

One symptom, many symptoms or symptoms that change over time.

Mild, moderate or severe symptoms.

It's literally... any symptoms? Mild, moderate, severe, general, specific, related or unrelated to a diagnosed medical condition. With the clear implication that if it's not diagnosed yet or if it's unusually severe, it's fake.

Many point-of-sale machines now are essentially just a smartphone with a card reader attached and the interface. The control layout can change at a moment's notice and there are no physical boundaries between buttons. With a keypad-style machine, the buttons are always in the same place and can be located by touch, especially since the middle button has a raised ridge on it.

Buttons can also be located by touch without activating them, which enables a "locate then press" style of interaction which is not possible on touchscreens, where even light touches will register as presses and the buttons must be located visually rather than by touch.

When elevator or door controls are replaced by touch screens, will existing accessibility features be preserved, or will some people no longer be able to use those controls?

This is not so much writing advice as it is personal experience, but it's about living as an upper limb amputee. If you have any questions for M, I can pass them along.

Mall bathroom ranking (all out of five stars)

Door: ⭐️⭐️⭐️ manual sliding door, light to open/shut but the lock was difficult and stiff

Space: ⭐️⭐️⭐️ manual wheelchair would fit well but a larger powerchair would struggle

Toilet: ⭐️⭐️ hand rail on one side, quite high up, stiff flush button

Amenities: ⭐️ no seat or changing table, hand dryer that was quite high up and no paper towels, sink was easy but manual, soap dispenser was really stiff and IT WAS OUT OF SOAP >:(, no emergency alert button/string, no bin?

taller is much much better for my powerchair, as the lowest it can go is still taller than most toilets. that makes it an uphill transfer to get back in my chair, which is not something i can do.

ive been trialling a toilet seat raiser at my house, which has been good. i can elevate my powerchair to transfer onto the loo, then lower it so it's an easier downhill transfer getting off after.

i have heard manual chair users often preferring a lower toilet tho, as for them sometimes its an uphill transfer to get onto the loo otherwise? its been years since i used a manual tho

Hello! I cannot speak to a preference as I personally have not had sex with another little person before. All of my sex has been inter-abled (with a non disabled person and myself) or with someone with a different disability. When it comes to an average sized partner, here's what I'd love them to know:

cw: sex and sexuality

Honestly I’m still figuring it out, but here are some things I think I’ve figured out so far:

- carers should not act like you are a massive inconvenience if you need help/ ask for something to be done differently

- carers are not your friend while they are at work. They can be friendly and you can be friendly back, but they aren’t your friend while at work. Again this can be tricky, and I have one carer who I’m now friends (and colleagues) with, but there are important differences. When they were still my carer there were different social rules.

-if you go to a group or event a carer should be in the background unless you’ve specified otherwise. I once went to a trans group with a cis carer who spoke (a lot) during a group discussion. This was absolutely not okay. I really struggled with this at first because it would be so rude to do this in other forms of relationships. Becoming okay with this and insistent on it has improved my life so much.

- carers don’t get a say in what you do, wear, or go unless that is part of their job (say if you need help to tell what clothes are appropriate for the weather). This is a big difference between friends and carers. If I’m going somewhere with a friend they might suggest alternatives they find more fun, a carer shouldn’t do this.

- carers should respect that they are in your home/ life. So they shouldn’t leave their stuff all over your house, even if they stay for several days at a time. They shouldn’t move things without you asking. I have a room in my house where my carers stay overnight, and a designated cupboard in the kitchen/ shelf on the fridge and I expect their things to stay in those spaces.

I don't really talk a lot about having a cleft lip and pallet (because I kinda lost interest in talking about it over the EIGHTEEN YEARS it took to fix everything lol), but recently I met someone else in the wild with a cleft and she told me a story that fucking haunts me.

Her nephew was recently born, and he had a cleft lip. So, we live in a small town, and this hospital had apparently never had a child born with a cleft lip and didn't know how to feed him. The aunt tried advocating for the baby, but the doctors, I quote, "weren't comfortable figuring out how to feed him" before a doctor with cleft experience arrived from out of town.

So that newborn baby with a cleft lip did not eat for SIX FUCKING HOURS.