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Suck it, ableism

If you haven’t heard about the controversy around plastic straw bans, it’s quite possible you live under a rock but I’ll try to sum it up for you. Plastic straw bans are sweeping across the country. And a lot of us are not okay with it. There’s so many things I could say about the ban, and I have so many feelings. But I am going to try and focus on telling people why the proposed solutions don’t work. Everyone else has done so many things explaining why reusable straws don’t work, and there are some links attached for further reading at the end of this post.

I have seen many people say that straws should be available on demand, and at first I was okay with that. But then I thought abut it some more. As a disabled person, do you know how many times I’ve asked for something and have been denied it, because someone thought I didn’t really need it? By putting the ball completely in our court, you are setting us up to be gaslit. You are setting us up for gatekeeping. And you are automatically setting us up to be denied what we need.

I have seen people say “well, bring your own plastic straw if you need one”. While currently, the Santa Barbara ban only applies to businesses, it would be naive to think that it won’t expand to individuals. Disabled people have been telling you, since the ban was announced, that this would happen. Why haven’t you been listening to us?

I have seen people say that if people truly need plastic straws, they should be prescription only. Why is that a problem? Disabled people are already constantly fighting their insurance for things they need. For example, I have friends who need medical supplies for their condition but those supplies are denied by their insurance. Why are we adding something else to an already broken system? What if insurance decides not to cover the straw? What if they don’t give enough straws?

And most of all? Milo Cress, the nine year old boy whose report is often citied doesn’t want a straw ban. The policy he advocates for? Just ask. Ask. I’d like to ask the able bodied people: why is it bad for the server to ask if you want a straw? Why should the burden of saying we need a straw fall on disabled people? Isn’t the server asking, the very policy Milo was advocating for from the beginning, a decent solution? Why are the solutions that Milo himself, now 17, are offering and the solutions that disabled people are offering not listened to… but everyone else is supposed to be listened to? I’d like you to think on that.

People have asked what people did before plastic straws. The answer? They died. In fact, bendy straws were created for disabled people. We are why they exist. Plastic straw bans hurt us. For a lot of us, reusable straws aren’t safe. Banning plastic straws is flat out eugenics and there’s no way to candy coat that.

 

For further reading, check out the posts here

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This year, I’m tired.

I keep trying to write something for “Autism Awareness Day”, or what my fellow autistics are trying to change into “Autism Acceptance Day”. I’m trying to write something articulate, something profound, something that will challenge people and make them think. I have so many words circling around in my head, but trying to get them to my keyboard is hard.

I feel like the things I say are controversial, and they shouldn’t be. It shouldn’t be controversial to say don’t abuse us, and yet it is. In the past week, I’ve read grizzly stories about abuse toward autistic children (I am not sharing the details. They’re unnecessary. But suffice it to say they’re horrific). I’m tired of defending children’s right to exist.

I’m tired. I am so tired, and I am so worn out. Advocacy is my passion, activism is what gets me pumped. I’m tired of having to fight for my right to exist. I’m tired of telling people that their awareness campaigns are acutely harmful. I won’t stop – it’s impossible to shut me up, but dammit, I’m completely worn out.

And so. This year I’m asking for compassion. For understanding when my words jumble. For supporting when I burn out . 

All I’m asking is for you to listen to our voices. All I’m asking is for you to amplify our voices. We’re telling you what we need. We need acceptance, not awareness.  We need you to help us fight against rampant ableism, because we’ve been doing it for years and we’re ALL TIRED. Because we’re autistic, we’re silenced. And that’s not okay.

This year

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As long as I live…

Countless times on the Internet, there’s been a meme of Trump mocking reporter Serge Kovaleski with the caption “As long as I live, I will never understand how this wasn’t the end of it.

First of all, every single time I’ve seen the meme, Kovaleski is just referred to as “disabled reporter” and his name is rarely, if ever, mentioned. This right there speaks volumes about how disabled people are treated in society. How many of us know his name? How many of us know anything about him, outside of “disabled reporter?” (I am not perfect myself, and I didn’t know more until I did the research).

I am a disabled adult. I have both acquired disability and disability from birth. Every single day, disabled people fight against a culture of ableism. And honestly? As long as I live, I will never understand how people thought THIS would be the end of Trump’s campaign. We’re used as tokens. We’re mocked. Our rights are attempted to be stripped. Are we really surprised that someone seeking a position of power mocked us?

It wasn’t the end of it because not everyone believes disabled rights are human rights. It wasn’t the end of it because that’s just how our society is. Perhaps I’m callous and cynical, but I’m no longer surprised when people mock us. What I continue to be surprised is that OTHER people are surprised – I guess because it’s something I’ve always known.

It wasn’t the end of it because of how disabled people are viewed. It wasn’t the end of it because society has normalized this behavior. It wasn’t the end of it because society defends and justifies this behavior.

That’s why it wasn’t the end of it.

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LuLaRoe, Disabilities, and No More.

I have made it no secret that I love LuLaRoe. The clothes are cute (when the patterns aren’t fails), they fit well, they’re comfy with my various health issues. And I’m saddened that I have to say no more.

Now, this isn’t the first time LuLaRoe has been problematic, to say the least, in regards to their consultants and disabled people. But for many people, like myself, this is the absolute final straw.

A few days ago, a fairly well known seller posted a video mocking people with disabilities. You can view it here if you haven’t seen it. If you don’t have the stomach for it or have difficulty hearing it, the problem is that Bobby uses The Voice (oh, you know the one. The one people use to mock disabled people. The one people use to make fun of developmental disabilities. THAT one). He declares “My name is Bobby, and I’m special. My name is Bobby, and I’m very special.”

Things blew up, and quickly. People were quick to call him on his ableism, quick to point out that this was making fun of disabilities. Quick to say that hey, this isn’t an acceptable way for someone conducting a business to act, nevertheless someone who is a decent human being.

He apologized. Well, sort of. You can see the apology video here but it’s long and ableist, so I’ll summarize for you. They defended it, because they have a disabled family member and that’s how they “joke around” with her. They apologized that they shouldn’t have done it… live. Shut the front door. They aren’t sorry that they mocked people with disabilities. They’re sorry they did it in a live video. He also says super weird things like “I always thought I’d have a Down Syndrome in my family” which, um, doesn’t really make a lot of sense? And if that’s how you treat your SIL off camera, just, wow.

Now. I hope your seatbelts are bucked, because the ride is just starting, my friends. The founders of LuLaRoe, Mark and Deanne, have a granddaughter with Down’s syndrome. As the custom is with LLR, Scarlett has a dress named after her. A portion of the proceeds  of the Scarlett dress are donated to the National Down Syndrome Society. LuLaRoe has raised a large amount of money for the NDSS, which was allegedly a post “near and dear” to their hearts. Right? So clearly they would choose their granddaughter over a consultant.

Wrong.

The National Down Syndrome Society found out what happened. And they were pissed. They gave LuLaRoe an firm line: either cancel Ableist Consultant’s contract or they were severing ties with them. You’d think that they’d do the right thing? Oh, nope. Here is the statement from the NDSS. And here is the statement from LLR.

Notice how very different they are? LLR’s statement is very “poor us,” They chose someone who mocked disabilities over supporting their granddaughter. They chose someone who violated their terms and conditions, over their granddaughter. Don’t believe me? Here, have a screenshot of the terms and conditions.

 

Here is the text/copy pasted for those with screen readers or who are Blind/Low Vision.

“Each Independent Fashion Consultant agrees to adhere to the following:

1. Conduct themselves and their business operations in a legal, moral, honest and ethical manner at all times.

2. Avoid actions that could result in conflict with other Independent Fashion Consultants or customers.

3. Honestly present the product and income opportunities

. 4. Speak well of LLR, other LLR Independent Fashion Consultants and our competitors. 5. Focus on building business through relationship building and superior customer service.

6. Abide by product guaranty and return policies.

Here are the last two items: 

Plain text:

“7. Follow incentive guidelines for your party Hostesses.

8. Conduct your business in such a way that strengthens the LLR brand and improves the opportunity for all Independent Fashion Consultants”

Okay. Hold up. The ethical and moral part? Does that only apply to consultants they don’t like? Apparently, because this guy STILL HAS A CONTRACT. Why? Because they don’t want to hurt his ability to provide for his family. Do “ethics and morals” only apply when it is against someone you don’t like? Why is it someone allowed to act in a way that isn’t ethical or moral, but apparently that isn’t a violation because “oh, he said he was sorry?” Saying you’re sorry means you still have to accept the consequences. But they chose to stand with a consultant…but not the NDSS.

And so, they hurt the ability of the NDSS to support children. Between the gala last year, the Buddy Walk, and donations, LuLaRoe raised a large sum of money for the NDSS. And they chose one consultant over all that. They chose a consultant who mocked their granddaughter.  

I believe that people can make mistakes and learn. But this isn’t a mistake. This isn’t the first time that LuLaRoe hasn’t done anything about discrimination toward disabilities. Consultants have discriminated against deaf customers. They still have contracts. Deanne herself referred to kids with sensory processing issues as “weird sensory issues”.

I am angry. And you know why? The apology that was given was very much a “we’re sorry we got caught”. I know this because it’s the same tune, different words that was always used when someone was told they had to apologize for bullying me. And every. single. time. they did it again. They just got savvier about it, they just changed the way they did it. It never stopped. And the apology was about the consultant and how they felt, not about the people who were impacted.

I am grateful for LuLaRoe. I met friends through it I wouldn’t have met otherwise, and other friendships were deepened. And that is invaluable to me. But I can’t support them any longer. I hate that I can no longer in good faith support my friends, I hate that I now feel sick to my stomach thinking about buying it. But when they are refusing to uphold their own terms and conditions (how is making fun of disabilities ethical? Why did this person get a get out of jail free card, when other contracts have been terminated for far lesser infractions?). If this had been a “little fish in the sea” consultant, I fully believe their contract would be terminated.

But as a result of this, the consultant gained business.  The group numbers increased. People flooded their page to buy their LLR, to support them. OF COURSE LuLaRoe isn’t going to terminate their contract, because it’s lining their pockets. Why are we allowing money to trump basic human decency?

Prove me wrong, LuLaRoe. You know better, so why the heck aren’t you doing better? You can’t bring out the ignorance card: people have tried to educate you. People have told you why your decision hurts them. And you don’t care. You have proven, over and over again, that you don’t care for me and my kind.

And that’s why I have to say no more. It’s why I am done with you. I can’t support someone who doesn’t support some of the most important people in my world – who thinks of lining their pockets before doing what’s right. Shame on you.

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When doing the thing seems impossible

I hate how hard things are some times. How I balance two extremes – when faced with extreme emotions, I even break down or shut down. There’s no middle line, there’s no balance. It flips from one to the other, and it’s so frustrating for both myself and those around me.

I hate how simple things are so overwhelmingly hard. Like household tasks, simple self care, etc. There isn’t even a way to articulate why it’s hard because even that is, well, too hard and too overwhelmingly lazy.

To those outside, I look lazy, I look selfish, I look like I blow things off and don’t care. But I do care, and I do want to do things. I want to be productive. I want to do the things I need to do in life, instead of doing, well, nothing. But when you have poor executive function, it just seems so impossible.

I break down tasks to try and make them easier, but it doesn’t always work that way. I have other people help me when possible, and it still seems so overwhelmingly. I so quickly go into disaster mode that it makes it such a delicate act to try and even do the most basic tasks.

I don’t even know why I’m writing this – I don’t have any profound advice on how to do the thing, I don’t have anything new to say that people haven’t heard before. But maybe it’s to show other people that the way they’re doing things isn’t weird or isn’t wrong – that for some people, it’s just HARD and that’s okay. Finding your own way of doing things is fine, Doing things in an unorthodox way is fine.

It’s just too bad society seems to struggle with those who don’t do things in the traditional cookie-cutter ways, so it’s those who need to break out of the mold the most that suffer as a result. Because while our ways work for us, society nopes out of them. But there is nothing wrong with our way, even if it’s not “normal”.

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Go light your world

  So carry your candle, run to the darkness Seek out the lonely, the tired and worn And hold out your candle for all to see it Take your candle, and go light your world I went to a Christmas Eve service on, well, Christmas Eve. We closed with Silent Night by candlelight. One of,…
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Ableism and Memes

There is something that has really been frustrating me lately, which is why I’m writing a blog entry at nearly 11 pm on Sunday evening after being out of town for nearly a week. But I can’t not say it anymore. I can’t keep quiet about this level of ableism.

There are a couple of memes that are really popular on Facebook lately. They come and go. One of them is a math problem, and implies that there is something wrong with you if you can’t solve it. These happen a lot. The other one is an image, and it implies if you can’t spot the difference, if you can’t see what’s wrong with it, you’re also somehow lesser than.

STOP.

That is ableism.

Not everyone is good at math. I failed multiple math classes at college level. I barely scraped by eighth grade math. I have a learning disorder and as a result, math is very difficult for me. And yet, people make comments like “if you can’t solve this, you shouldn’t be able to breed.” “If you can’t solve this, you shouldn’t be able to vote.” “If you can’t solve this, *insert insult here*”. Okay, really? That’s offensive. I don’t need to be able to solve what to you is a simple algebra problem in order to be a member of society. There’s no reason to belittle those who cannot solve them. If you can? Great! If it is something you struggle with and still manage to figure it out? I’m proud of you. But for some of us, it isn’t possible. For some of us, no amount of trying can make something click in our brains that we literally are incapable of. All it does is hurt us. All it does is make us feel lesser than.

Then there’s the vision memes. You know. “If you cannot spot the red panda, then you don’t deserve to be on the Internet. “If you can’t see the problem, blah blah blah.” Again, stop. There are SO many reasons why this level of ableism is infuriating. It insults blind and low vision people. It insults people who may not be able to focus to find the thing. It mocks those who have very real struggles, and are actually amazing people – their brain just doesn’t work as your brain might.

I know, I know, someone is going to come back with “Well, I didn’t mean people like *you*. You’re obviously smart.” SHUT. UP. If you don’t mean the ones like me, then which ones did you mean? I’ll let those words sink in. You mean the ones that you pick and choose to not be good enough, right? The ones who were disadvantaged by no fault of their own. The ones that society already mocks and looks down on, because they don’t meet your bullcrap levels of good enough.

It’s absurd and ableist to base self-worth, intelligence, and basic rights to people based on just some viral meme. So knock it off.

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To the person who sent me a nastygram

I am disabled.

My disabilities and my health issues, both visible and none, psychiatric and other types, hinder my various abilities in life. I don’t know what it’s like to be able bodied. I don’t know what it’s like not to have a disability.

Being disabled is hard. I sometimes lose things I love – like events I’ve been looking forward to for a year, friendships, certain aspects of freedom. I cope by talking about it.

Like a lot of people in my age demographic, I opened a Sarahah account. I knew I was taking a risk. But I got so many nice, sweet compliments and when I’d feel down, I’d read them and feel better.

But there’s always that one.

“You talk about your health problems too much and it makes you seem desperate for attention and pity. Grow up.”

I don’t do it for attention or for pity. I do it because it’s my life. I do it because it’s the reality of how I live. I literally don’t know life without being disabled.

I assume you wouldn’t tell someone who posted constantly about their kids they were desperate for attention and pity to grow up, right? After all, they live with their kids and see them every day. Most people are okay with people talking about their kids and don’t write them off as immature.

What if someone talked about their hypothetical job constantly? Again, they must be desperate for attention and pity, right? No, I guess not.

So WHY is it so taboo to talk about my health constantly? It’s what I live with every day. Juggling doctors, juggling appointments, finding the fine balance between what I can and can’t do is incredibly difficult. I talk about my health problems. I actually have been working on posting it less.

Disabled people are often put up on a pedestal to admire, we’re expected to be inspirational, we’re expected to defy the odds. But not all of us do. Not all of us defy the odds. And there’s nothing wrong with that.

I don’t know who you were. I don’t know who you are. But please, just delete me from Facebook if you’re that annoyed with me talking about my life and existence as  attention or pity? I honestly don’t give a crap if anyone comments on my stuff. If anyone feels bad for me. I just want to talk about my life and my existence as it is.

And finally? Saying something like that anon, and telling me to grow up is actually hilarious. Pretty sure that means I’m not the one who needs to “grow up” if you’re sending anon nastygrams. There’s a delete or block button, and I suggest you utilize that if I annoy you that much.

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Let disabled people talk about their lives

I’m really tired of the way disabled people are currently treated.

If we talk too much about our disabilities? Oh, we’re too NEGATIVE. We’re just whining.  We need to try  ~positive thinking~  *tosses glitter*. We just need to be more positive! Yay!

If we try to be too positive about our disabilities? See, it’s not really that bad. We can’t be THAT disabled if we’re able to see the good in it. If we’ve accepted our disabilities, then we must not really be disabled. 

The thing is, no matter what we do, people seem uncomfortable that disabled people exist. Some think that we should be willing to share every detail about our lives, some think we should just shut up and live in silence.

The thing is, EVERY person has a DIFFERENT level of comfort with what they are okay with sharing or note. For the most part, I am happy to talk about my disabilities and teach and educate. But sometimes, I just plain don’t want to and there is nothing wrong with that! I don’t owe anyone an explanation on why or how a certain aspect of my disability affects me. “Because I’m disabled” IS an adequate answer to “why can’t you do thing?” and details aren’t necessary.

As an activist and an advocate, I think it’s important to be open and honest about my disabilities. Which, for the most part, I am.  However, that doesn’t change the fact that there are some things I am more private about and don’t really want to talk about. And just because I’m willing to write about it, doesn’t mean I want to answer the random person on the bus who asks me about it.

I get to choose when, where, why, and how I talk about my disability. That isn’t for someone without my disability to decide. If they don’t want to hear about it, they don’t have to put themselves in a position where they have to listen. If I want to share why or how a certain thing affects me, that’s okay! I’m not being negative or candy-coating my disability or whatever. If I don’t want to, it doesn’t mean I’m not “really disabled” or I don’t “really want to educate”. I have a right to privacy just like anyone else.

People should be able to talk about their disabilities how they want.

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Let that be enough

My hearts breaks every time I see a fellow autistic believe they are a burden. My heart breaks every time a fellow autistic thinks they aren’t enough. My heart breaks every time I see a fellow autistic think they don’t deserve accommodations, that they’re asking too much, that they should just suck it up.

You aren’t a burden because sometimes you need things reworded in a way that you understand. You aren’t a burden because sometimes you need silence and sometimes you need noise. You deserve to have a place you thrive in for work and school or anything, really. If that means you need noise canceling headphones, if that means you need to do it in a seperate, dedicated room – that’s okay! There’s nothing wrong with that.

If you need expectations written out and not just, well, expected  of you, that’s okay! That doesn’t make you a burden. Just because it’s not what the majority of the world seems to thrive on doesn’t mean it’s what YOU need to thrive on.

If you need to take a comfort object, if you need to stim, if you physically cannot sit still, that’s okay. You aren’t hurting anyone else by stimming, you’re doing what makes you comfortable in a very scary world.

Your existence is not a burden. . Neurodiversity is natural. You are WORTHY of the help and supports that you need to THRIVE in the world. Just because someone needs different, more frequent, or what you deem as “easier” accommodations, doesn’t mean that yours also don’t exist and that yours aren’t worthy.

The accommodations I need due to being autistic may be different than the ones someone else needs. That doesn’t make theirs more or less important than mine; it doesn’t make theirs more or less valid than mine. They still exist, because that PERSON exists. 

You are a beautiful, worthy person who just happens to be disabled. You’d beautiful and worthy and perfect without that disability, you’re beautiful and worthy and perfect with the disability. Accommodations make it so that you can enjoy and thrive in the world as you deserve to!

There’s nothing wrong with asking for help. It doesn’t mean you’re weak. There’s nothing wrong with needing supports. It doesn’t mean that you’re a burden. There’s nothing wrong with needing help sometimes.

You exist. You’re worthy. You’re loved. You’re valid.

And just for today, just for now, let that be enough.