My disability held me back

Something I’ve run into multiple times throughout my life is people telling me not to let my disability hold me back. If you take a look at a Facebook group for any disability, you’ll find it run rampant with people who talk about how their disability doesn’t hold them back. You will see people saying how their disorder doesn’t define them. You will see people talking about how despite a disability, you can achieve anything.

We see all the people talk about how their disabilities didn’t hold them back. We see disabled people who got their degree held up on a pedestal, as something we should all achieve to be. We see disabled people achieve great things in sports. We see headlines about disabled people who defy the odds. We see the “pretty disabled” people glorified in media. But what about those of us who just exist? And why are we turning these disabled people into a feel-good story? (That’s another post for another time).

I don’t want us glorified in media. I don’t want us to turn into inspiration porn. But what I do want? I want it to become acceptable for our disabilities to hold us back. Some disabled people have no choice but to work. Some disabled people have no choice but to not to. Some disabled people get degrees and jobs. Some disabled people don’t.

I am so tired of having to explain why I am a college drop out. I am so tired of having to explain why my disability DOES define some aspects of who I am. There’s nothing bad about me being disabled. There’s nothing bad against pushing back those who say that my disability shouldn’t hold me back when the truth is, it has. By trying to ignore that and trying to push through, I further damaged my health.

I long for a day when we are taught that it’s okay to be disabled. We don’t need to use pretty language to make it sound better. We don’t need to push ourselves through pain and illness to be accepted in society. Disability is natural. Disabled people need to learn that we don’t have to be someone else’s inspiration, but that we can live our lives in the way that’s best for our own health.

The only disability is a disability. Full stop.

The struggles of self ableism

As a disabled adult, I often fall victim to internalized ableism. I find my own biggest critic being myself. I read so many articles about the dangers of inspiration porn and the ableist struggles so many of my friends made. As a disabled person, I’m desperately trying to navigate a world that wasn’t made to accommodate me.

I’ve talked about being tired of talking about ableism. I’ve talked about self-ableism in the past, but I feel like it’s a subject that needs to be revisited. Because I live in a world where I’m constantly seeing headlines about disabled people doing amazing things or an able-bodied person doing something nice for a disabled person.

And in a way, it gets tiring. Because I don’t want to be anyone’s inspiration merely for being disabled and I don’t want anyone to take pity on me simply because I am disabled. At the same time, I struggle with the same issue. I will never be making headlines for doing impressive physical feats. While I do push my personal limits and I do surprise people with what I can do sometimes, what is the cost?

Because I live in a world where disabled people are often praised merely for existing, I find myself wondering when I will be enough. I struggle with self-ableism when I see other disabled people get jobs, graduate from college, or do other really cool things. I wonder why I’m good enough. I wonder why these people can achieve these things, but I can’t.

It’s April, which means it’s “autism awareness month”. I see autistic people praised for merely existing. I see autistic people painted as burdens and difficult to love. I see autistic people being both held up on a pedestal and thrown under the bus. There are all these messages about what it’s like to be an autistic person and what it’s like living with us. As I read all this, as I’m taking it all in… I find myself taking it in much more than I realize.

We talk so much about the dangers of ableism, but what about when the one who is most ableist is yourself? The ramifications are serious. Depression. Anxiety. Physical. Is there an answer for it? I don’t know what it is. But I do know that this is a very real problem that we need to shed light on and accept that it’s okay to struggle with the very same thing that we speak out against.

Autistics Speaking Day 2018: Words Can Be Hard

It feels like there’s nothing to say. It feels like so many other people have used the words and used them so much better than I can. There are things that certainly need to be said, but I don’t even know if I’m the right person to say them. I don’t know if I’m qualified enough. I don’t know if I’m smart enough. I don’t know if I’m eloquent enough. Needless to say, I struggle with words often (which is kind of funny for a blogger, I guess).

But then again, maybe for autistics speaking day I should write about how I sometimes don’t have words. Because that’s something I’m currently facing in my life. I feel like sometimes  I gloss over the most difficult parts of being autistic – I talk about how I’m okay with it but I don’t feel like I talk with about what I struggle with as candidly. And so, here I am. Autistics speaking day. Talking about how speaking (or writing) is sometimes hard.

Something that has been noted in my life is that often when faced with having to deal with my emotions – I shut off. I can talk your ear off about Anime Fargo, video games, anime, or just about anything that isn’t related to my feelings or emotions. I will happily babble about what’s easy and advocacy. But when it comes to what’s real, when it comes to what’s raw, when it comes to my struggles… that’s a lot harder. It’s so easy to shut off to try to not deal with those things anymore.

But words. Sometimes there are words in my head, and they don’t match the words that come out of my mouth. I switch my words, I say the wrong thing – it’s almost like autocorrect in real life. The words just aren’t always right, and it’s difficult to accept that and be okay with it. But then when it comes to what’s most important in my life… allowing myself to say those things can be hard. I can often write about them, but verbally saying them? There’s a bit of disconnect there.

And here I am. Autistics speaking day 2018. As usual, I shut down some today when faced with emotions. I’m trying to learn how to navigate these and I’m trying to learn how to control it. It’s difficult and it’s painful – but it’s a part of life. Things don’t always have to be perfect. The words don’t always have to be right. I’t’s okay to struggle, and it’s even okay to not have words at times. Learning to accept that has been difficult for me, but I think in the end, it’s worth it.

 

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

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

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.

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.

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”.

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, hands down, my favorite part of any Christmas service when they do that. How one candle lights another and another and another…

My candle, though, was the most hilariously small flicker I’ve ever seen on a candle. I mean, it was seriously a tiny flame. But a tiny flame still lit the darkness in front of me. A tiny flame still lit larger flames around me. And eventually, my flicker grew into a flame.

One small flicker of light can light the darkness, both figuratively and literally. One small flame can make a difference in a terrifying world. Everywhere we look these days it’s darkness and despair. And sometimes even a small flicker struggles to stay lit. A small flicker can light darkness. A small flicker can be enough for someone to hope again – a flame that stubbornly stays lit against everything surrounding it determined to blow it out

I may be weird, but I search for symbolism and analogies in everything. It’s how my brain makes sense of the world and it’s what I find comforting. There’s something perfect about me having the tiniest flicker of a flame. It speaks about my life – a tiny little flame, too stubborn to go out against the odds of not staying lit. Too stubborn to give up, despite the forces against it. As a child in Sunday School, I remember singing “This little light of mine, I’m gonna let it shine.”  I didn’t pay much attention to it, as a child, it was just a thing I did.

But now I’m older, and it holds a new meaning. Not one just about faith, not one just about a simple little childhood memory. No – it’s about my tiny flame refusing to go out. It’s about my little flicker still holding out, despite the odds for it to blow out. Tomorrow is the first day of 2018. 2017 was a bit of a roller coaster of a year in many ways, and that’s an understatement. But despite everything, despite all the odds, my tiny flame stayed lit.

My tiny flame still holds strong. Against ableism, against racism, against homophobia. Against all the injustices in the world. My passions, my hope, my dreams, my friend-family, they keep that tiny flame shining in the darkness. Despite all the forces around trying to snuff that flame, it still shines as bright as it can.

I often feel that my life is a tiny flicker. I feel like my voice is too tiny, too week, to feeble to reach the darkness. But in just mere hours, it will be 2018. The forces of the world will be trying to snuff my flame. The world will be dark and cold (and not just because I live in the frozen tundra of North Dakota!). There’s a lot of people who need a light – even the smallest flicker of one.

in 2018, I’ll keep my light shining. In 2018, my small stubborn flame will keep shining for all who need it. For anyone who needs a light in their darkness. For anyone who needs a reminder of light, love, and hope. My resolve for 2018 is for my light to be shining against all the odds, as a reminder that as long as there’s a flicker, there will always be hope.

So carry your candle, run to the darkness,
Seek out the hopeless, deceived and poor
Hold out your candle for all to see it

Take your candle, and go light your world

Lyrics from “Go Light Your World” by Chris Rice

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.