Doing, Being, Becoming, Belonging

Apparently it's also very funny.

"An accessible family cookbook that offers solutions rather than tricks to empower the food-averse, autistic, and picky eater, with 46 recipes. This much-needed cookbook combines tips and techniques with a dash of understanding about food aversion and how to help your kids—and yourself—cook beautiful meals in an empowering way, and is a groundbreaking resource for anyone who has ever been called “picky” or “discerning.” Learn how to alter the texture or taste profile of a dish, or even fit it within a specific palette with a unique color-coded guide. Delicious, nutritious, and easily tailored recipes (including for gluten-free and vegan eaters) include:

the perfect smashed cheeseburger

Italian sausage and potato soup

the best omelet

stuffed focaccia 

chocolate pinwheels

and dozens more

Art Hacks for Physical Disabilities!!

I know art can be inaccessible to physically disabled people for a lot of reasons, and I think art should be accessible to everyone, so here’s a couple of the things I found to help for a few different issues you may face that stop you participating!

I have a link to all these items (UK) in my link tree!!

IMAGE DESCRIPTION

Slide one: illustration of a white woman with pink hair, wearing a pink outfit, sitting in a power wheelchair, looking at the viewer with thumbs up. Text Reese “hacks to make art more accessible”

Slide two: illustration of three different kinds, using three different types of pencil grips. One hand uses a circular grip. 100 is a large, rectangular grip. Another uses a grip that is ergonomic and fit into the hand. Main text reads “Paul, grip, strength and dexterity”. Subtext reads “there are loads of different types of pencil, grips or design for different disabilities and conditions. Increasing the width of the pencil can give more texture for a better grip using a pencil with a thicker with also reduces the amounts of pressure needed to hold a pencil you can make your own using items like pool noodles. KT tape an air dry clay. You can also put these groups on things like paint brushes.“

Slide three: illustration of a hand using a tool that looks like a wrist support with a paintbrush connected to it text next to it reads “this talk next a paintbrush to your hand in a way that means you don’t need to hold the paintbrush with your fingers and you will need to move your arm around“ on the bottom right hand corner is in photograph of a guided hand device. Text read “regarded hand as a tool designed to reduce the need for moving your hands and fingers and relies on the movement of your shoulder and upper arms and can be used with different materials like paintbrushes, pencils, pens and styluses.

Slide four: main header reads “when in bed“. Illustration of an iPad pillow with a iPad in it is next to text that reads “iPad pillows, put your tablet at an easier to access level when sitting or lying down“. In the bottom left hand corner is an illustration of a girl sitting in bed in her pyjamas with a pillow behind her and a bed table as she is drawing. On the left hand side is a photograph of a bed table with the text reading “bed tables are used to give you a flat tire up surface while in bed, and are often height adjustable”. In the bottom right hand side is a bedsit, a pillow with the text underneath, reading “ bedsitters of specially shaped pillows that you put behind you in bed to help you set up and give you a soft surface to lean back on”.

Slide five: maisie had a read out “at a desk left”. On the left hand side is a photograph of the document holder with the text “document holders put your paper at an angle to help prevent crane in your neck down”. On the right hand, middle side is an illustration of someone using a armrest and on the bottom left hand side is a photograph of the armrest. Text next to them reads “economic arm rests clip onto your table or desk and give you a surface you lean you’re forearms or elbows on. This can be used to steady your arm and reduce pain and fatigue while sitting at a desk”.

Slide six: maisie reads “foot and mouth painters” . on the right hand side is an photograph of swapping Augustine, an Indian woman with no arms, wearing a sari painting with her left foot. In the bottom left hand corner is an illustration of a woman with green hair painting using her mouth. Text reads “foot and mouth painting is a technique used by artists who do not have, or cannot use their arms so hold the paintbrush in their mouth or using their foot. Swapna Augustine is a foot painter who has painted with her feet and participated in multiple exhibitions of foot and mouth painters. Her art is stunning and I would definitely recommend checking some of help work out.“

Slide seven: main text reeds “art without brushes and pens”. On the left-hand side is a photograph of a spin art device. Text next to read it reads “spin out involves using bottles of ink and squirting them onto a spinning piece of paper to create spiral art. On the middle right hand side is a illustration of a laptop with coding art written on the screen. Text me next to it reads “coding art involves making programs that design and create art pieces digitally. This could be used in conjunction with an eye tracking software.“ On the bottom left hand side is a photograph of a child in a power wheelchair with paint on their wheels painting onto a large piece of paper. Next to this is text reading “wheelchair painting involves putting paint on your wheelchair wheels and moving around and large piece of paper. Sometimes you can connect a roller to create more marks.“

Slide eight: text reads “what do you do to make art accessible for you?”

MASKING MYTHS BUSTED: “Masking = Acting NT.”

FALSE.

Autistic masking does not necessarily mean “pretending to be allistic/neurotypical," although you’d definitely be forgiven for thinking it does.

Non-autistic researchers have been referring to it as “camouflaging” for years, framing it as an intentional choice to suppress autistic traits and replace them with allistic ones in order to “blend in.” Doing an internet search on the term will return several similar results.

But now, Autistic researchers are in the game, and their take is much more nuanced and comprehensive than that. (Funny how that happens, isn’t it?)

They’ve found that:

- It CAN be intentional but is often subconscious and involuntary 

- It is a protective response to trauma and feeling unsafe 

- It is often about suppressing more than just autistic traits 

- It is about identity management and being able to predict how people will treat you, not just “blending in”

Some people will lean into being “the bad kid” because they know that’s what people expect of them. Some people will even act “more autistic” because they know that’s what people expect of them. Others still will do things to attract attention in controllable, more “acceptable” ways to avoid attracting attention in unsafe, more stigmatizing ways. Not because they WANT to be that way, but because it lets them predict people’s responses better, which feels safer.

Also, there are Autistic people who can’t “pass” for non-autistic no matter how hard they try. That doesn’t mean they’re not masking. They may actually be working hard to suppress A LOT, they just can’t do everything to neuronormative standards.

None of these people will be accused of “blending in,” yet they are still masking their hearts out. When we assume they are not, we miss all the harm that masking is causing them. But they are suppressing themselves and suffering the consequences of that just as much as any Autistic person whose mask successfully says, “Hey, I’m just like you!”

“Also, there are Autistic people who can’t “pass” for non-autistic no matter how hard they try. That doesn’t mean they’re not masking. They may actually be working hard to suppress A LOT, they just can’t do everything to neuronormative standards.”

I as an intellectually disabled person, can have sex. I can consent to it. I can use my aac to consent. I can use my mouth words to consent. I can use the sign language I know to consent. Multi use of communication is important for me. And I can consent using any method.

Saying that intellectually disabled people cannot consent is not only wrong, but leaves a vast population of intellectually disabled people out of the conversation. Instead, rethink your language. Maybe instead say “some people cannot consent due to this or this” however, you never know. The most disabled person you know could be possible to consent maybe. You never know someone’s comprehension skills. Stop assuming. Unless you know the person really really well, you never know.

Not to mention you never know what that person could be capable of in the future. Have they been taught about sex? Have they been sheltered from it and not told about it? People with ID are notorious for not having been taught about Sex. It’s an important subject that everyone has the right to learn. 

it's a mother with a daughter, kindergarten age. they sit at the table next to me, each with their own plate, having a quiet conversation. the daughter eats very quickly, stuffing her mouth, you know how kids sometimes do. the mother tells her, very softly:

"remember what we talked about? you and your tummy are a team and you have to be a team player! let's make sure you chew your food well so it has an easier job later, and has enough time to tell you once you're full"

the child nods, very serious and focused, because she has a very Important Mission now after all. she begins eating slower, chewing well, and additionally taking some time to Ponder the food on the fork before chomping a bit of the many different dishes she picked small portions of.

"what is your favourite thing from your plate?" the mom asks, and the child points to something on the plate. "why? what's the flavour?" the mom continues, and the daughter replies, taking the time to describe the flavour and the texture, even though she "doesn't know what it is at all but it's yummy" and the mother smiles and explains to her what that food is. I think it was mozzarella, in the form of those small balls that work well for salads and appetizers.

once the daughter's plate is empty, she looks at it a bit puzzled.

"are you still hungry?" asks the mom and as the child nods, she says "let's give it a moment so your tummy can catch up as well." - a moment passes - "still hungry?"

the child nods enthusiastically. "alright, let's walk over to the buffet and we'll pick something more"

"can you bring?" the child asks and the mom just says, smiling:

"no, because you should choose what looks like it will make you not hungry anymore. also, walking a bit will help your tummy understand how much more food you two need to feel full so you're no longer hungry but you're also not too full so that you feel uncomfortable or nauseous" and they went to get more food.

Have you ever found a productivity system that works for you (whether it be your Google calendar, bullet journaling, agenda-ing, etc), and you're so pumped because it's like finally! Now I can actually get some stuff done! But then time passes, days or weeks or years, and the novelty of it runs out, and then it kind of just... Stops working. It can be so frustrating, because this thing that used to work no longer works for seemingly no reason.

But, that isn't a failing of the thing, that thing worked for a certain amount of time, and that's good! I used a massive agenda in my first year of uni, and it kept me on track for all my assignments. My second year agenda? Barely touched it. Instead, I started to use a bullet journal, and that was the thing that helped me through most of the year. But as time went on, my spreads got less creative, and in the final term, I didn't even want to touch it because it was too much work. So I switched to Notion.

The agenda didn't fail me, and neither did the bullet journal, it just worked for a certain amount of time. And when that time inevitably runs out, you can just say, "thank you for serving me for so long, I'm going to pivot to the next thing." And then you do it without feeling like you should try harder or like that thing failed you.

Still, the kid’s thumb will have difficulty reaching both so rapid switches are not possible. On the left hand of the switch the stick is above and the dpad below, and the opposite is true on the right. This is a direct consequence of how a kid might use the controller. In most games the left hand controls movement - meaning an analog stick - and the right hand controls discreet inputs - meaning the dpad/button diamond.

Children’s also struggle to reach shoulder buttons and have lower grip width, so the natural gamer grip in which two fingers are resting on the shoulder buttons does not work at all for children. They usually have to use all four fingers to hold up a heavy device. The shoulder buttons go from being the most easily accessed buttons on the controller to the most difficult.

A child’s grip strength is lower, and thus so is their ability to hold a heavy controller comfortably, especially one not designed for their hand size. A single joycon in sideways mode, often used in child’s party games on the switch, is a far better controller size for a child while it is uncomfortably cramped for an adult.

It is not a coincidence that the Switch, which is marketed as a family console, comes prepacked with the controllers that are kid friendly and adult friendly controllers are a secondary purchase.

There are more things you can point out, but in a practical sense you can see these design principles applied by comparing something like Kirby vs Metroid Dread.

Kirby is almost entirely controlled through the face buttons, with only the rarely used defense button mapped to the shoulder buttons, and you can really get by with never using it. The triggers are not used at all. You rarely have to combination press anything. If my memory is correct, the shoulder buttons are never used for any temporary transformation abilities. The difficulty of using new abilities should not be compounded by hard to reach buttons.

Dread on the other hand uses combination presses a lot and ties three critical abilities (free aim, missile use, and sliding) to the shoulder buttons. The omega cannon, a rarely used but critical and time sensitive ability, is tied to the shoulder buttons for the easiest and most intuitive possible use. The stress of defeating an emmi should not be compounded by fumbling with controls.

Parent: why can’t you do your homework?

Kid: I don’t know!!

Parent: okay. I’m going to list some options, and you pick the one you think is closest to what you feel, okay?

Kid: mhm!

Parent: is it because you haven’t finished what you were doing before? Or does the homework feel to big to do? Do you not understand what you’re supposed to do for homework?

___

You are not being self-destructive. You just have two deeply rooted and fundamentally contradictory ideas about what is best for you: doing the thing, and not doing the thing. 2. Get curious about this pain that your brain is so worried about. When we understand exactly what pain we fear and why, we can work on reducing those fears. This is why I think treating resistance as an opaque external force is such a mistake. Internal resistance is not immovable — it responds to reason, to alternative scenarios, to making space for the emotions that seem like such a threat — but to shift it you have to understand its particular content for you. 3. Negotiate. You may not be able to figure out what is motivating your internal resistance immediately, and even once you do, it can take some time to figure out how to address your fears and worries about pain in the offing. In the meantime, I suggest haggling. Will your internal resistance allow you to work for 10 minutes? What about five? If you can’t work formally, could you talk into your phone? How about brainstorming in the bathtub?

You can create so much increased space in your brain just moving from “I need to apply will power so I stop being so bad and lazy” to “I’m experiencing a lot of internal resistance, let me get inventive in working with it today”.

Yup. 

I’m debating how much rage I want to add to this post by giving further historical context.

Piano for the bedridden, 1935.

From winged pianos to rocking pianos, killer pianos to piano beds, I’ve collected the most remarkable piano imagery here.

i have never made a post like this before but i haven’t seen anyone here talk about it yet so i want to at least provide some links because this is extremely important for disabled people with or without benefits in the USA.

link to this tiktok

she doesn’t name the bill in the video but in the comments it’s clarified that the act referred to is the SSI Restoration Act of 2021.

“The Supplementary Security Income (SSI) Restoration Act of 2021 has been introduced in both the House and the Senate. The bill would improve the lives of millions of SSI beneficiaries around the country, including over 2 million older adults who are living below the federal poverty level due to inadequate benefit levels, and often lose or are denied benefits due to outdated eligibility rules.” (link) - summary from Justice In Aging, an organization dedicated to fighting senior poverty

“This bill restores a program that plays a key role in the security of millions of Americans. Specifically, it modernizes and improves SSI by streamlining and simplifying the claiming process, expanding the resources and income limits, and eliminating punitive reductions in benefits.” (link) - summary from the SSI Restoration Act Section by Section, linked on Congressman Raúl M. Grijalva’s website, in the social security tab

below is taken from the issue brief on justiceinaging.org regarding what the bill entails

• The SSI benefit rate will be increased to at least 100% of the Federal Poverty Level, adjusted annually, so that no one receiving SSI will be left to live below the poverty line.

• Couples will receive their full SSI benefit, totaling twice the individual rate, rather than a reduced marriage penalty rate.

• Low-income seniors and people with disabilities who can’t work enough to meet all their basic needs will be able to save up to $10,000 and couples will be able to save up to $20,000 for emergencies such as car repairs, new roofs, and other unexpected expenses, without losing benefits.

• Individuals will be able to receive up to $128 monthly from other sources, such as Social Security benefits or pension payments, without a corresponding loss in benefits.

• Individuals who are able to work will be able to earn up to $416 a month without being penalized.

• Individuals who live in households with others, including family members, will no longer be penalized with lower benefits through the in-kind support and maintenance provision.

• Individuals who transfer assets (even small amounts of money to a family member) will no longer suffer harsh penalties.

• Eliminate installment payment requirements and extend the time to spend down resources so that SSI recipients who have been waiting for months or years to obtain their benefits can receive the full overdue amount.

• Exclude retirement accounts from countable resources to allow people with disabilities to build up their savings for retirement and use those resources to pay for expenses in later life.

• State and local earned income tax credits and child tax credits will be excluded from income calculations in the same manner as general tax payments.”

here is a link to the official bill

here is the issue brief from justiceinaging.org on the SSI Restoration Act of 2021 which explains what would change about SSI in more detail, and has the list provided above

here is the FAQ (also justiceinaging.org)

here is a carrd made by myelasticheart on tiktok, which also details the bill, AND includes a script for calling representatives, as well as links for finding said representatives

[Image 2 ID: Another screenshot of the website, with text reading: "The trails described here fall into two levels of accessibility: Very Easy or Wheelchair Accessible.

"Regardless of the designation given on this or any other site, it is always wise to call or write ahead to ascertain trail difficulty and current conditions."

Alongside a small blue handicap icon (a stylized person in a wheelchair) is a paragraph reading: "This symbol represents a trail which is described online, or by first hand knowledge as told to me as wheelchair accessible. This does not necessarily mean it is fully ADA compliant, nor does it specify which kind of wheelchair can be used."

Alongside a small black icon of a slightly hunched person using a cane is a paragraph reading: "The elderly hiker symbol means that the trail is considered very easy and does not have difficult steps, rocks, or roots to negotiate. Many of these trails are quite short or, if long, the first part of them is easy. Again, this classification is based on online description, or first hand knowledge as told to, or experienced by me. This is a highly subjective choice." End Image 2 ID]

[Image 3 ID: Another screenshot from the website. Alongside a small eye symbol, the text reads: "The eye symbol designates a trail designed to help those with visual impairment. There might be signs in Braille, audio interpretive information, and/or rope guides.

"For each trail given, I have a link to the park, refuge, etc. that manages it. Contact them to learn if a trail is appropriate for you.