Time and time again I find that the greatest accessibility device is another person. Autonomy is beloved but community is divine. And truly, done right, each breeds the other in spades.

After all, what makes the braces and the canes? People and beings provide for everything. The massage and the conversate and the stay-out-too-late, all bringing peace and abundance.

A wheelchair can get me there but it can’t get me anything. You can get me food and cool water to drink. A sponge hand can get me holding things but you can hold for me and do more and much more quickly.

So why do we always push for only autonomy? Does our community only come at such an expense that we are afraid of needing? Of asking? Can’t we Become and Be freely. Is that too much to ask?

I know I’m preaching to the choir here, but I can’t help but feel that so many of the problems in treatment and healthcare come from how our society totally misrepresents what medicine is and how it works. So, let’s clarify some misconceptions:

1. No one can give you a “clean bill of health”. There are not tests for every condition, and no doctor under the sun is going to order every single test possible.

2. No category is perfect. Practically every single condition has its abnormal presentations, it’s uniquenesses, it’s fuzzies around the edges. The vast majority of people with any condition do not present 100% with all the signs of that condition and absolutely nothing else.

3. No person fits perfectly into one category. Very rarely are you going to find out “what is wrong with you”. The answer is usually that there are several things. Some of them wrong, some of them just hurting because of the context, and they are all interplaying to create a unique circumstance inside of you

3. No treatment is perfect. Some of them are very close, and rarely hurt anyone. But some of them rarely work at all. Medicine isn’t the process of knowing how to fix things, it’s the process of trying the best you can with the information you have at the time, and trying to make sure you do more good than harm in each case. The best doctors are the ones who are honest with you about this, and tell you the odds, and let you make informed decisions.

4. Doctors and nurses do not have the time, energy, or ability to properly care for all of their patients. There are simply not enough of them. They work long hours, they are exhausted, they are trained on often flawed and contradictory information, and by the time they graduate half of it is out of date, and they don’t have the time to keep up. The best of them try, and often end up completely burned out by it. A lot of them just get tired, and petty. And oftentimes, the only people they can take it out on is the patients. This sucks. But it is understandable. Navigating healthcare is dealing with a bunch of hurt people who are hurting each other, even when trying their best. And you are navigating it at the worst moments in your life. There is no easy solution to this for either you or the doctor.

5. If something feels wrong in your body, or something isn’t working how it should, no test can tell you that’s not true. They can rule out a ton of things, and that’s really good. But if you are in pain, they cannot “rule out” that you are in pain. There may be nothing they can do for you. The issue may not be a sign of some big underlying issue. It may resolve on its own. But that does not negate what is happening inside of your body. Medicine has not described every single way the human body can be, and every single way it can be in distress. Medicine focuses on the things that are easiest to help, the things that will help the most people, the things that will make the most money, and the things that they stumble into some treatment for. The system as it is cannot bear the weight of knowing and treating everything.

When incorporating disability into your politics, it is good to remember that the allocation of resources is one of the central questions that divides political ideologies. It is the “why”, whereas most of the other questions are sorting out the “how”.

I think one of the core tensions that plays out between disability movements and other liberatory movements is that knowledge of disability fundamentally reshapes how you understand the allocation of resources. In one sense, to be disabled is to need resources allocated to you because you cannot get them on your own.

•Disabled people know, experientially, that we need flattened hierarchy; the hierarchies of the medical establishment kill us and further disable us. They strip away our access to the resource that is medical knowledge and medical care.

•We know that we need an ecological relationship that is sustainable and stable, because the current eugenic environmental management system is sometimes the cause, and more often the exacerbator, of our disability. But also because we know that the scarcity of resources it is progressively creating will kill us first

•We know that we need continual industrial production to maintain the means by which we can be diagnosed and treated, and that even a short term collapse of production will kill many of us.

•we also know that there must be a fundamental reorganization of all society because we know that the current organization is also killing us, and that methods of gradual change will not prioritize us, and that many of us will be dead by malice or neglect before they come into effect.

•we know that we need ongoing, active care to survive.

•we know that a society cannot meet the needs of those whose needs it does not understand. We know that any plan for meeting needs, or granting rights, or ensuring values must explicitly include us, because we know that the nature of disability is that things do not work the same for us as they do for others.

The lived experience of disabled people creates a direct challenge to the ideas of resource allocation that those with less experience have developed. We see the gaps in their proposals because we know we are the ones who will fall through them. It is easy for an abled political theorist to say “we will work it out when we get there”. But someone who will die with 2 missed doses? they must say “will we get there?”

This question is often met with dismissal, for understandable reasons. At its heart, the existence of the disabled reminds the theorists that their ideas are incomplete.

But, for a moment, I would ask you to consider us a prompt, instead of a threat. Yes, we can point to the gaps in your ideology. But we are not doing this to hurt you, or even to say you are wrong. We point to the gaps because we want to help you fill them.

So, political thinkers, take a moment to imagine your world. Imagine the look, the feel, the smell. Think of your social relations, your food, your housing. Conjure up every beautiful dream for society that you’ve built.

Now ask yourself

1. In this society, how would someone get their medication reliably, Every single day? How can they ensure the quality and safety of that medication?

2. In this society, how would someone seek information about what’s wrong in their body? Are there widely available high-tech diagnostics, like MRI machines? (Bonus question: how does your society go about inventing and creating new high tech diagnostics?)

3. How would someone who cannot move their body bellow their neck get around. How would they get food, water, shelter, socialization, and freedom to leave their domicile and participate in the world?

4. How would someone who cannot read, write, or speak due to intellectual disability be able to live, and to have meaningful access to all the things that you believe humans deserve in your society?

5. In trying to build this society, transitioning from our current world to this new one, how would the people mentioned in above questions survive the transition?

And try to answer these questions. It’s okay if you don’t know right away. It’s okay if you have to think about it, do some research, or talk to some people. You love dreaming about the world we could build, right? This is more information for you to develop and refine that dream.

These questions are not exhaustive, at all. But they are a good starting point to check for gaps in your plan for reality, and to see who is currently falling through.

In your urgency to reject the pressure to be an inspiration, do not also reject that there are good things to be found in the way your body is breaking down.

In your revolt against the constant pull to be productive, do not also revolt against your bodies desire for movement.

And in your unending yearning for the way you are to be okay, to have a place in society, do not neglect that the way you are is not the only way you will ever be. You will always be changing.

What I learned from being sick.

When one thing goes wrong, it’s more likely that another will go wrong. But also, when you start to improve something, itll probably get easier to improve other things.

Everything is everything. Take small steps and big ones. prevent harm where you can. Cause and effect form loops that feedback and build more of what is already built.

This is the best thing and the worst thing. When you are in a position where things are going downhill so hard, it feel’s impossible to ever go up again. And that’s okay, it may be impossible. But what’s almost definitely possible is to slow it down. Remove as many factors from the loop as possible. Those that can’t be removed should be diminished.

What you will find is that you suddenly have all these small, positive feedback loops. Maybe youre eating in a way that makes you feel better, and that gives you more energy to cook, so you can eat a little better again and for a little cheaper. And maybe you are riding your bike a little more, which builds strength and makes injuries less common in your legs, and also means you can ride to pick up your own meds, making it less likely for you to get them late.

These small things add up. But more than that, they continually open up new opportunities for improvement that weren’t there before. This part of it is particularly important, because it means even the little things, the things that don’t amount to much on there own, don’t have to just be valued on their own merit. They are part of a greater push towards positive looping. They are integral steps that make up the whole.

But still, it’s not about “getting there”. There is no place to get too. You can’t go into this stuff hoping to be abled again. As much as possible, I’d advise avoiding specific goals. I really wanted to play guitar again and be able to draw. Those goals made me not see the possibilities of dobro and watercolor, which filled similar needs in my life, but we’re much more achievable with my hand issues.

It is good to know what needs aren’t being filled in your life, and to try and find the most accessible ways to fill them. We all need food, exercise, water, art, joy, time among plants, novelty, community, and deep trusting relationships. A big part of what disability is is not being able to get these needs met in the ways you want to or in ways that are best for you. This sucks. But sometimes, things are out of your control.

In AA, one asks for “The serenity accept the things you cannot change, the courage to change the things you can, and the wisdom to know the difference.”

With my disabilities, the courage to change what I can hasn’t been the primary limiter. The main issue I’ve had has been being too close minded on how something can change. I keep imagining narrower possibilities than what exists in reality. And that makes sense. None of us can see the whole of what’s possible at any moment. But that is where open mindedness and novelty can really open up a whole new world of recovery.

because recovery isn’t “I’ll be how I was before.”

It’s not “I’ll be the way I want to be” either.

Recovery is the process of learning how to fill your time. Recovery is the process of learning how to meet your needs. It’s about learning what options are available to you, and letting those lead to more options.

In doing this, start by doing whatever will be the most helpful for the least effort. This isn’t an exact science, and there is trial and error involved. For me, this means drinking enough water, eating within 3 hours of waking up, and putting on my back brace the moment my back reaches a certain pain threshold. Those are the easiest things I can do that will help the most. They form a foundation that allows me to do the next easiest, the next most helpful things, like the dishes, and socializing, and art. Those things help me cook more, thing clearer, and maintain my relationships of support with caregivers. All of that lets me exercise more, and build strength, and do laundry. Essentially, learn to apply the ideology of triage to your own disaiblity.

Okay< i don’t have a conclusion to this that ties everything on it together, so ill say this

Everything is everything. Do what you can. Don’t wait unless you have to.

What’re some songs that resonate with your experiences of being disabled?

I’d really really appreciate if this is shared around. I need to see my experiences in music more. Please help me find that.

Something to understand that not all pain gets better by doing nothing. Sometimes laying in bed makes it worse.

Sometimes my hip fucks up and the only way to make it better is to walk on it, carefully, for like an hour.

Sometimes my back hurts in a way that means I can’t use my mobility aids without making it worse.

Sometimes my throat has issues only singing can fix.

So the whole “oh you said you were injured / in pain but then you went and did (__activity__), so clearly you were faking it” thing is entirely fucking meaningless.

You aren’t “catching fakers”, you are just fundamentally misunderstanding the human body.

Your body is degenerating, and everyone’s is, you need to acknowledge that if you want to live. You need to get better at life every day to make up for it and survive it

‘Better at life’ means doing whatever you can to make life easier for you and your community in both the short term and the long term.