phys-psy-disabled

Been very frustrated lately by lack of phone call accessibility as someone who lacks speech but needs a lot of resources to stay healthy.

With rise of AI, it's only getting worse and worse.

More places changing their systems to incorporate AI answering machines.

Thing is...

Whenever I hear most people ranting about this change, it's usually about how annoying it is from an abled-person perspective or environmental or ethical impact.

Which are important valid reasons to be upset. I share those sentiments too.

But feel like disability is once again forgotten about within important discussion about change.

AI creates terrible language accessibility issues.

In fact, that's why it so annoying to deal with it.

In the past, if a place didn't have a call center or desk person to answer calls, they use extentions.

That meant you had to press a few numbers to get the right person.

Now with AI, you're expected to have a full conversation with a robot.

Tell them why you're calling, who you need to speak to, verify your info so the humans don't have to later, etc.

These bots can be bad at understanding what able-people are saying, so imagine how they handle these disabled callers:

People who use AAC (speech aids/devices)

People who slur, stutter, have "strange" voice or pronunciation

People with rapid or disorganized speech

People who use poor grammar & who don't speak full words or sentences

People who mix up similar common words

People with "deaf accent"

(i don't know if there is a different preferred term for this. Im sorry if I sound offensive. Please Lmk)

People with non-communicative speech such as vocal tics, echolalia, or babbling

Anyone who uses speech or language in a way that needs a human mind to interpret

Anyone whose voice sounds notably different

Ability to understand what AI is saying can be harder too:

d/Deaf people and other hearing differences

Auditory processing disorder

Receptive language disorder

Developmental disability, especially intellectual and learning disabilities

(AI can't help people who need things explained a certain way. AI unreliable and fails to adapt a lot.)

Anyone who frequently can't make out sounds and/or speech

Anyone who frequently has trouble with meanings in conversation

The problems I often face with AI answering machines (and that I'm sure many other disabled people have faced as well):

AI slightly mishearing me/my device

AI mishearing so badly that it basically makes up a fake conversation

AI not hearing me/my device at all

AI registering tics and stims as answers

AI "explaining" an instruction by repeating the same instruction again word-for-word

AI directing me to the wrong person without trying to confirm what I said

AI sometimes just... hanging up on me right after I speak my first answer...

These are the machines being put in front of

hospitals

doctors offices

mental health centers

pharmacies

transportation and in-home care

health insurance member services

medical supply companies

government resource agencies

non-profit organizations

advocacy groups

justice centers & other legal resources

customer service lines

many other places disabled people often need to access from home

It's another example of some of the most vulnerable being pushed away from the things we need, and we're also being forgotten in these discussions about things that can affect us a lot

Next time someone is ranting about AI job interviewers, please also remember:

the AI pharmacy assistants that make it impossible for someone with a speech disorder to sort out their meds

the AI scheduler that won't allow a D/deaf person to access the right extension of the clinic to set up an appointment

the AI agent that confuses an intellectually disabled person into anger and tears

the AI answerer that hangs up on a mentally ill person seeking help in crisis because they aren't speaking coherently enough

Human beings need to be at the forefront of human resources and issues for disabled people especially. Please remember us. Please fight.

Okay, as I am currently Solarpunk posting, let me talk about the topic that in regards to Solarpunk actually is worth critiquing. If you actually - you know - do interact with the community and the stories.

Because here is the thing: Solarpunk as a genre generally tends to be actually quite good about most of the base infrastructure. Most writers in the genre do actually think about how energy is produced and how the associated supply lines work. They think about how food infrastructure works. And how people get around. And how the internet works. They also do seem to have some thoughts at least about how waste management works - though admittedly that is often a bit less thought out other than "renewable materials" and "recycling". Not perfect in that area, but... at least some thought is there.

No, the big issue is health - and disability care.

Look, I am a disabled person myself. I cannot walk long distances on my own. I struggle with stairs. And I need to take 12 different medications. 9 of them daily, the other three in weekly or biweekly intervals. I need to see specialist doctors at least once a month - usually more often. And frankly: I still actually am still more abled than a lot of other people. I can still work. I can still travel with fairly little preparation. I can still do fun stuff without needing to overthink it. And while I do need my medication: I will survive if I am without any single one of them for a week. All of them for a week gone would be an issue. But some of my medications are at times hard to get due to international supply chains and... that is fine. I can live through that.

But others can not.

And this is an issue that a lot of Solarpunk stories just do not consider.

Accessibility in Solarpunk Worlds

So, here is one of the core issues: when most people hear "accessibility" they first and foremost think of wheelchairs, hard of hearing people, and blind people. And that is of course only a small fraction of people who are actually disabled.

We are on tumblr, so chances are y'all have been told about this just a bit. You likely know that people in a wheelchair usually can walk to some degree but might struggle with balance, or exhaustion, or other issues. Some people might be in a wheelchair on some days, and not on others.

You might also know that people with autism and ADHD and other neuro differences might just need environments that are not as bright, not as loud, and so on.

But chances are that other than this... you do not know much. And it is not your fault. It really is not. Because this is just not taught. And currently a lot of people kinda try their best to fully "other" the disabled people. So you do not think of disabled people as people who are largely "functioning" as society expects them to.

But yeah. Disability can have a lot of faces, and even the same disability can look completely different in different people.

You know. Not everyone likes to use wheelchairs. Not everyone who has lost a limb wants to use prothesis. Not everyone who is hard of hearing finds hearing aids useful. Not everyone with ADHD profits from medications.

And then there is the other big issue: cars.

Because a lot of Solarpunk conversation rightly criticize cars and the car centric infrastructure we have. But the issue is if we do not have car accessible infrastructure it also means that ambulances cannot access a lot of areas. And... those are kinda important.

And of course there also is just the additional bit that while I absolutely think that we should finally get away from car centric infrastructure. But some people will just need cars of some form. Because for one reason or another public transport, bikes and the like will not be working for them. And this is an issue that a lot of people engaging in Solarpunk just do not want to admit.

Petrochemicals and Medication

And then we have that one big issue. And that is petrochemicals.

Right now a lot stuff in our society is in some way or form tied to petrochemicals. So to oil. We take the oil out of the earth for fuel, but as we only use some part of it for the fuels, some part for plastic, and some parts for... other stuff.

And some of this other stuff is medications.

A lot of medications on the market right now go back to some chemicals that originates with the petrochemical industries. And some of those chemicals we right now cannot produce without earth oil being involved at some point.

No, this is not all medications of course. There is a bunch of stuff that is largely done without petrochemicals involved. Stuff that might be produced by fungi, bacteria, or - we have to remember that - genemanipulated animals. But even those medications currently at times still need some solvents or other materials either to work, or to be stabilized for longer than a few days.

And of course a lot of other things related to medicine are super dependent on Petrochemicals. Syringes are made of plastic. A bunch of other stuff is as well. And while for those maybe we might at some point be able to recycle that stuff into a good quality - but right now we are actually not able to do that.

A lot of people who disagree with anarchism or Solarpunk keep saying that the issue is somehow related to people no longer caring for disabled or sick people. But generally, I do not think it is a problem. Humans always have been taken care of one another. Medical jobs tend to be generally the kind of job people like doing - or would like doing if they were not constantly overworked and underpaid.

But one issue we need to keep in mind is... that we still will need to pump oil for the time being. Because otherwise people will die due to no longer being able to access life saving medication.

The Invisibility of Disabilities

One of the core issues with all of this is - of course - that disabilities tend to be treated like invisible within even progressive circles. Everyone is kind of aware that disability exists, but people who are not themselves affected often will just straight up ignore anything that goes past wheelchairs, blind and hard of hearing people.

Often enough, even among leftist people, there is also the narrative about "We will just heal everyone for good", not realizing that a) this is very unlikely, and b) that this is actually eugenicist ideology.

In Solarpunk people tend to actually think about most other infrastructure. Food, information, energy, water. That tends to be taken care of. But medical infrastructure? Infrastructure for emergencies? That is often the kind people do not think about enough.

And again: yes. It is highly likely that if we had a world in which we were not working ourselves to death, where we are not constantly stressed, where our basic needs are being taken care of, and where we have community, a lot of acquired disabilities would be more rare. We know that people who have community and less work stress will be much, much less likely to develop cancer or heart disease.

But there are still disabilities that will be there from birth. There will still be disabilities in old age. People will still have accidents. And people will still suffer infectious diseases. And yes, some people will still have cancer and stuff.

So, ideally any Solarpunk story should account for that. And for how they are supposed to get care, and medication, and pretty much anything else needed to survive.

I deal with chronic pain and fatigue, executive dysfunction, brain fog, and mobility issues. I have been a professional author sinve 2021.

1. Write what YOU want to write, not what the world needs or what people say you should write.

You don't owe the world representation or inspiring words on the subject of your pain or disability. Write what moves you and that YOU feel passionate about. You don't have to JUST write about disability.

2. Let daily goals motivate you, not shame or frustrate you

It's great to write or work daily if you can, but if you need a rest day or time to decompress, it's better to let yourself do that than power through and set yourself up for exhaustion, pain, or a flare-up. Give your body grace.

3. Let it take time

When you're disabled, it feels like time is constantly being stolen from you - by your fatigue or accessibility issues, by administrative burden, by the amount of time it takes to communicate things, etc.

Writing will take more time too, and that's okay.

4. Swap Between Projects

If you struggle to focus on one project at a time, it's not cheating or abandonment or undisciplined to swap between multiple drafts and ideas. Let yourself enjoy the process. Let things marinate and come back to them months later. Follow your passion in the moment.

5. Feed the tank

People say that good writers need to read, and sure, if they can, that's great - but "reading" doesn't just mean reading a book. You're engaging with the text from a craftsman's perspective: how did they write it? Why does it work or not work? What can you learn from it?

If you can't focus on text right now or can't hold a book, you can still apply those questions and skills to other media: to videogames, movies, TV, the news, to art, to music. You're taking apart in your head or in conversation, seeing how it works, and taking lessons for yourself.

A person can go from no symptoms at all to being profoundly debilitated all in one day.

Some have baseline symptoms so low and flares so high, that things can go from 1 to 10 very quickly.

And HOW am I supposed to do that when I HAVE FATIGUE.

I wish they'd at least be more specific like,

"it is recommended that once in a blue moon when the stars are aligned and you have approximately 5 minutes of energy before you are dead in bed for the next six days, go walk to your mailbox and back".