Yes! I have quite a few of each in my bed (Mostly stuffed animals.) My main one is an elephant, named Mr. Elephant. (I think I got the idea to name him that from Stephanie’s “Mr. Bear” from Full House, which I watched a lot as a kid, around the time I got my elephant.)
Accessibility success of the day :) stuffed animals can help
Being a spoonie doesn’t mean you should force yourself to spend all the time and energy you’ve got on tasks that feel like work. You deserve to take breaks, take care of yourself and have fun just like everyone else. You may not have as many as others but you deserve to enjoy the spoons you’ve got.
Very tired of our lives being seen as not worth living.
[Image Description: A two-part illustration in monochrome dark blue. The illustration features five disabled people: A cane user, a manual wheelchair user, a person with an invisible disability, a person with a prosthetic leg, and a power chair user. The first illustration focuses on their feet, captioned “We are NOT disposable.” The second illustration features their smiling faces, captioned “We are not a fate worse than death.”]
The following is a transcript of a speech written and presented by me, on March 1, 2018, at the Disability Day Of Mourning vigil that was hosted by Canadian Autistics United in New Westminster, BC. TW for filicide, murder, violent ableism.
So, as Sam introduced, my name is Amythest. It’s my honour to be here today.
I am autistic, and I am chronically ill, and I am disabled. And every year I find it more difficult to speak on disability and filicide.
The challenge is this: How many ways can I come up with to say, “Please stop killing us”?
This is a day of remembrance. This is a day of mourning. This is a day where we gather as a community and say, through our presence and our vigil, that we will not forget those who were lost, who were taken from us. We will not look away from this horror. We will witness, and we will grieve the loss of life, and we will not accept this.
Because this is also a day of judgment. This is a day of accountability. This is a day on which we lift our voices and call for justice; on which we affirm with our strength, our numbers, and our fire that this is not okay. That we are watching. That we demand better, and we won’t be silenced, and we stand together to demand protection under the law and full rights for every disabled person.
But how does this happen? It’s a question that’s asked a lot. How does this happen?
This happens because disabled lives are considered less valuable, less valid, and because disability is thought of as worse than death. Because disabled people are considered burdens, objects of pity or inspiration, as incomplete or extra or subhuman.
Ableism has been around a long time, but disabled people have been around longer. It’s been this way for a while, but it hasn’t always been so, and it doesn’t have to be this way.
Tens of thousands of years ago— stay with me— there was a Neanderthal man who lived, who loved and was loved. We know from his skeleton that he was disabled at a young age and later incurred serious injuries and developed a joint disease that would have made daily life difficult and painful.
Researchers call him Shanidar-1, after the location where he was found. He died elderly and well cared for, at an age impressive even for non-disabled Neanderthals to reach. What that means that, disabled as he was, his life was considered valuable.
Although he could not contribute to group welfare in the same way was as his non-disabled peers could, he was still an important member. Shanidar-1 was cared for by his community for decades, and he is not alone. There are many other examples of early humans and pre-humans caring and providing for disabled individuals.
There is nothing natural, just, or fair about the way we treat disabled people today.
Colonialism is not natural. Capitalism is not natural. Ableism is not natural, it is created and cultivated. They appeal to “nature” to justify their bigotry. They defend their position as oppressors with lies.
They say, “Survival of the fittest.”
They say, “Burdens on society.”
They say, “Unnatural, abnormal, to be corrected.”
And they are wrong. We are as natural as the Western Red Cedar. We have every right to be here. But oh, how they hate us and fear us, all the more when they can’t control us.
We are not burdens. We are not black holes. We are not broken, or bad luck, or better off dead. There is nothing true in their hatred. Their fear is not sacred. And their ignorance is not untouchable.
We will change the world, and they will change with it or be left behind.
I can’t speak to hate anymore.
Let me speak on love.
Love moves mountains. Love is hard work. Love is labour, love is sacrifice. Love is giving, is healing, is changing. Love implements policy. Love demands justice.
Love listens and follows. Love is allyship, is uplifting, is empowering. Love must motivate what we do, always. Love should be our highest goal.
It is love that brings us here today. Love, and her sister Hope, and those beautiful daughters Anger and Courage.
It is love that illuminates fear and reveals it for what it is. It is love that combats hate, that calls for progress, that demands we do better.
It is love that drives us, because it has to be.
And now I speak to every disabled person who is listening: You deserve the world. You deserve to experience its daily majesties and mundane miracles. What you can do matters. What you want is important. Your life has worth and value.
Together, here today, we affirm that we deserve to live. We are better alive than dead. We are just as human as they are. We are not alone, and together we are mighty. We have done and will do incredible things.
And to those we have lost to the violence of ableism, those named and unknown, those relative few accounted for and the countless lost to indifference and time: I am so sorry. You were wronged. You deserved so much better. We remember.
What will they say about us? I know what I’d want the children of the future to hear from their teachers, to read from their books.
“The early 21st century was marked by the resurgence and new growth of the disability rights movement. At that time filicide was a systemic and frequently occurring horror, and yearly vigils were held to mourn the dead and call for justice from a biased system and a seemingly uncaring society. Though we find it difficult to imagine now, disabled people were forced to defend their humanity in the face of violent ableism and to beg for their very lives. We owe much of society’s advancement in human rights to the work of these disabled activists.”
I know that’s what I’d like to hear.
We have a long way to go. This is uphill every way and we are opposed on all sides. But I look at the work of past and present activists, and I look at how far we’ve come, since Woodlands, and I believe. I believe we can achieve a future in which these vigils are a part of our history. In which the lives of disabled people are just as valued, cherished, and defended as non-disabled lives.
I believe that because I have to. Because we’re not alone. Because hope is kept alive by each one of us.
So when I want to hide, I show up. When I feel hopeless, I find reasons to hope in my community. And I challenge myself:
How many ways can I come up with to say, “Please stop killing us”?
Universal design is a principle wherein you find the thing that the largest number of people possible can access, and then use that. The classic example of this is a ramp (vs. stairs or a curb), because pretty much anybody, no matter what tools they use or don’t use to move around, can get up a ramp, whereas stairs and curbs are barriers to people who use wheels to get around.
The great thing about universal design is that while it is often initially made for people with particular disabilities, it often turns out to be a better design for lots of people for lots of reasons! Like curb cuts, they are great if you have a stroller or a rolly suitcase or a bike or a wheelchair. Or text-to-speech software, designed for people with visual impairments or reading disabilities but turned out to be a lifesaver for me when I was writing my thesis and needed to read like 3000 articles a day but also wanted to be able to clean my house and cook food.
Universal design is the default for everyonebecause disabled people shouldn’t have to be constantly asking for special accommodation and finding the special button that will make something work for them, that’s exhausting and othering. The world should just be designed to allow you to live your life in it, you know, like it is for nondisabled (and otherwise non-oppressed) people.
I’m not visually impaired and I don’t personally know anyone I could ask. As soon as I see a visually impaired person be like “hey this doesn’t actually help” I will be against the #newblue. But until then…stop whining. No, this doesn’t in any way fix the nsfw-pocalypse or the pornbots or nazis or other issues on the site. Maybe it’s a little bit of a “problem one…NO” situation. But like, it’s fine. It might actually help some folks.
Your eyes are NOT “bleeding.” You won’t even notice the difference in three days.
Personally, I like it. It reminds me of the color the sky turns over the Hudson on warm evenings in July. I miss July.
Let’s talk about the social positives of mobility aids!
I think a big fear of a lot of fellow spoonies and otherwise disabled folks is that if they begin using a mobility aid, the social negatives will outweigh the positives- for example, we fear we will be stared at, insulted, talked about. We fear we will be acused of faking, or turned into a spectacle. We fear strangers may assume the worst of us, or treat our disabilities as a conversation starter. But while these things do happen, there are a lot of social positives to using a mobility aid (meaning, positives unrelated to the mediation of your disability).
Here are my favorite things that happen when I’m out with my cane!
- I live in NYC, and I take public transport everywhere since I can’t walk very far. When I use a cane on the subway, nine times out of ten someone will offer me a seat! Whether this comes in the form of directly asking if I’d like to sit or subtly getting up so I can sit down, there is often space made to accommodate me on the subway.
- I don’t feel judged for using the elevator, even if I’m just going up one floor. Often, in the busiest buildings, people will roll their eyes if I press the next floor up. When I have my cane or crutches, I feel like I don’t need to justify or explain myself.
- This one is a little self indulgent, but ever since I painted my cane and personalised it, people staring doesn’t bother me as much- in fact, I like getting the attention because I’m proud of my art!
- I don’t need to justify the accommodations I ask for- a visible mobility aid can serve to create a more complete answer when dealing with more bigoted and ableist individuals…
- People take me more seriously when I’m having a flare up in public. If I need a break, if I need to sit in the middle of a store or be given extra help to get somewhere private, if I’m feeling sick and need fast access to a locked bathroom, if I need to hold on to someone, even a complete stranger, my issues are immediately taken seriously.
- People don’t assume I’m lazy for walking slow, or taking an elevator, or taking the subway just one stop. It’s a nice relief.
Obviously I understand a lot of these shouldn’t be issues for those WITHOUT mobility aids- people shouldnt assume ability, and judging someone for their body function is awful. I’m not saying mobility aid users are better than anyone. I’m just pointing out the positive social aspects of using one, as all I tend to see here are people upset about the annoying parts of having a cane, crutches, etc.
Edit: please please PLEASE feel free to add your own mobility aid positivity!!
I’m struggling with this one. The older I get the more I realize that I have internalized ableist ideas linking what we deserve with what we contribute. I want to grow out of that ableism and be clear that you deserve to have your needs met no matter what you are able or unable to do. At the same time, after everyone has what they need, I also think effort should be rewarded. What do y’all think about this?
I can work or study from bed sometimes but otherwise I pretty fully relate to this. Inability to hold a conversation is no joke. I think I hit that point a bit earlier in the scale than most because my auditory processing is absolute shit.
when signing out forms to apply for disability / filling out a form for diagnosis
you’re supposed to fill it out as you on your worst days
like, I filled out forms that said I could do most things usually
like, my doctor added in the conditions like “yeah, they can feed themselves when not stressed” “they can do this when not stressed”
but how I should have filled it out was more like
“some days I can’t feed myself” “some days I can’t leave the house”
My doctor didn’t even know this, but I talked to someone who had worked with people with both developmental and intellectual disabilities for a number of years, and she told me to write down how it is for your bad days
this should be a thing they tell you, but it isn’t
part of the reason I didn’t get my autism diagnosis as soon as I should have is because I filled out forms wrong!
This also goes for filling out forms for disabled parking rights. I’ve been rejected multiple times for a pass cause I didn’t find this out till recently.
Wow
Also you’re generally supposed to fill it out as you are without help.
That throws me too. Because the more help I get, the more capable I get. It’s easy to forget what happens when the help falls away even partially let alone completely.
Echolalia, monotone voices, stuttered speech, slurred speech, labored breathing between words and sentences, mechanical AAC voices, AAC or sign users who consider those to be their voices, selectively mute voices, disorganized speech, speech with vocal tics, speech considered to be of “inappropriate volume”, speech with vocal stims, all disabled voices and the ways they present
So the Spoon Theory is a fundamental metaphor used often in the chronic pain/chronic illness communities to explain to non-spoonies why life is harder for them. It’s super useful and we use that all the time.
But it has a corollary.
You know the phrase, “Stick a fork in me, I’m done,” right?
Well, Fork Theory is that one has a Fork Limit, that is, you can probably cope okay with one fork stuck in you, maybe two or three, but at some point you will lose your shit if one more fork happens.
A fork could range from being hungry or having to pee to getting a new bill or a new diagnosis of illness. There are lots of different sizes of forks, and volume vs. quantity means that the fork limit is not absolute. I might be able to deal with 20 tiny little escargot fork annoyances, such as a hangnail or slightly suboptimal pants, but not even one “you poked my trigger on purpose because you think it’s fun to see me melt down” pitchfork.
This is super relevant for neurodivergent folk. Like, you might be able to deal with your feet being cold or a tag, but not both. Hubby describes the situation as “It may seem weird that I just get up and leave the conversation to go to the bathroom, but you just dumped a new financial burden on me and I already had to pee, and going to the bathroom is the fork I can get rid of the fastest.”
I like this and also I like the low key point that you may be able to cope with bigger forks by finding little ones you can remove quickly. A combination of time, focus, and reduction to small stressors that can allow you to focus on the larger stressor in a constructive way.
This is great accessibility advice. Focusing not only on having a reduced resource of energy to start with, but also on which events are particularly bad energy thieves.
this is my dashboard on desktop (they have a really convenient, easy to use app, too!)
What habitica does is it turns your daily tasks, your habits that you want to form, and your to do list into an rpg game. You level up, gain experience, and play the game just by marking things as done on your to do list. You can put literally anything in there, too. whenever i have a big project i’ve gotta do, I put every step, down to the letter, in habitica (which is a fucking superb way to xp farm while still staying organized).
The game is super fun because if you’re like me, and you work best with a rewards-based system, you’re literally in heaven. Everything you do gets you points, and bonus stuff, and helps you unlock parts of the game.
If you struggle to get your shit done, seriously check out habitica. It’s free and I’ve only been using it for like 2 weeks and I already have a vastly different mindset than I used to about keeping myself on track.
anybody know any songs centered on disability experiences (that are written by disabled people)?
i only know ‘seizure boy’ by watsky, but i figure there’s gotta be some more out there!
There’s a band called the Idealistics and they’ve released a song called “Here Come The Zebras” to raise money for Ehlers-Danlos Support UK. The vocalist has hEDS.
If you count mental illnesses you could add the song Ana’s Song (Open Fire) by Silverchair which is about his battle with an eating disorder.
I just remembered another one.
Her Diamonds by Rob Thomas. It’s about his wife Marisol’s struggle with an auto-immune disease. She sang backup on the track and also helped produce its arrangement.
Great resource. I’d like to add that Avril Lavignes new song “Head above water” is about Lyme disease.
An electric toothbrush and an escalator are two things that can stop working and still accomplish their original goal.
Ah, wonderful! This post can help me illustrate something I’ve been trying to articulate for awhile: the concept of benign or unintentional abelism.
Escalators and electric toothbrushes are perfect examples of things that many able-bodied people assume exist for their own convenience, and this post is a perfect example of that unconscious assumption.
An escalator that has broken down is still perfectly functional, right?
Well, sure–if you could have used the stairs to begin with.
But for people like me, for whom the escalator was not a convenience but a mobility device, a broken down escalator is not functional.
An electric toothbrush might seem like something that could be just as easily used turned off as turned on, but for someone with Parkinson’s, or any other number of nerve, coordination, or grip issues, the function of the electric toothbrush is a necessary feature, and without it, the task at hand becomes far more arduous (or even impossible).
I’m not angry or trying to point out why this post is “bad” or “wrong”–I’m simply trying to point out that people who assume every time or energy-saving invention was created as a means to help able-bodied people be lazier should consider re-examining those assumptions. It might help you become more compassionate toward your disabled friends and family, or at least more aware of the struggles we face daily.
I’ve had plenty of folks ask for examples of abelism and I am terrible at coming up with them on the spot, so here you go. This is a great one: assuming every modern convenience is only a convenience for everyone, when for some, it is, in fact, a necessity.
This is a great explanation of how inaccessibility is maintained through unintentional ableism.
[Image: Two feet in tennis shoes with Zubits (two rectangular magnets clicked together, with holes jutting out from their outer sides) strewn around and laced into the shoe. Two hands demonstrate how the product lets you “open” your shoelaces down the middle for easy on and off, after initially lacing each side of the lace up the magnets instead of crisscrossing each other.]
Zubits ($20) The Accessible Magnetic Lacing Solution
Hot diggity dang! These look ridiculously easy to work with and are certainly the most elegant solution to accessible footwear we’ve seen—and we’ve seen quite a few.
How they work: lace your shoes up with these little doohickeys, and you can easily slip them on and off with a quick click. The magnets can take a lot of movement without failing, but still come apart easily when you go to take off your shoes.
Not only do they remove the need to work your poor joints into tying and untying a knot, but once you learn the hands-free technique, it looks like you can pop these shoes off without even bending over (hear that, POTS patients?). And honestly, with a little dexterity, you might be able to put ‘em on hands-free, too.
Not sure you can manage pulling the magnets apart? Not to fear: the tips and tricks page covers a few different ways to git ‘er done with even more accessibly.
Bonus: it sounds like patients and PTs have found ways to use these on laced braces and similar orthotics, too!
Here we will focus on accessible feminine clothing items.
Let’s start with bras. It’s no secret that many spoonies really struggle with bras. Many even give up bras as they find that they aren’t worth the hassle. So here are some alternate options that help with getting them on and/or comfort.
Front fastening bras:
Front fastening bras are much easier to get on and fasten for most. These are especially good for people with limited arm motion range. I have seen them use the traditional hook fastening as well as instead using a zipper.
Comfort bras:
The name says it all really. There are different types of comfort bras to suit your needs. Remember that you can buy a lot of different styles and designs that can look cute and/or sexy. A comfortable bra does not equal an ugly bra.
Wide shoulder straps disperse the weight of your breasts over a larger area, reducing pain. Wider straps also prevent the strap from digging into the skin.
No underwire. Underwires can be painful so it would suit may spoonies to avoid them. Instead look for alternatives. Without an underwire, the area under the breasts will be larger in order to give you support. Without the wire, it often looks like a band that goes all the way around your ribs. Thicker bands usually provide more support without compromising comfort (although this isn’t always the case 100%)
No fastening at all. Many comfort bras stay in place with the use of straps and elastic rather than wires and fastenings. These can take many forms but a simple and comfortable example looks similar to a tank top (but one that doesn’t cover your belly).
Padding or no padding? Either is an option!
Bralettes:
Bralettes are basically bras without any metal (and often padding too). They are considered very comfortable but not very supportive for people who really need it. They’re getting quite popular now and can have much more detail than regular bras which I know some spoonies would like. They are somewhat considered socially acceptable to be visible or even used as a loungewear top which is good for spoonies who struggle with heat. Thanksto bouquetchildotn for reminding me of this. I was actually wearing just a bralette as I wrote this and thought that would remind me to include it :’)
Skirts: Skirts are good for anyone who struggles to reach their lower legs/feet. They are easier to place your feet into than trousers, and when you go to the toilet you can lift a skirt which saves you reaching for your ankles.
Dresses, jumpsuits, and playsuits: These things are great for many of us. They are a whole outfit in one. There are all sorts of types and fits. A loose/flowy fit is super easy to put on and doesn’t need to have any tight or constricting areas. You can have a thin fabric that keeps you super cool in the summer, and you can get thicker options for when the weather is cold.
Do you think I’ve missed something? Let me know!
~Amber
Accessibility success of the day. Finding the right clothing for your needs can mean a lot. As an autistic, I especially find I sometimes need tighter and other times looser but always soft clothing. As for help with overheating, I own a cheap cooling vest for hot days. Lastly, invest in a good pair of comfortable shoes!
As someone who has arthritis in the hips and is thinking about going from a cane to forearm crutches to support both sides, how would I walk with them?
I assume it would be like I was using a cane on both sides so left leg - right arm and right leg - left arm?
