Don’t Tell Me I’m Not Disabled

It’s strange to see the community that fought so hard against being called “differently abled” switch back to insisting autism isn’t a disability.

Maybe you don’t consider yourself disabled, and you don’t have to. But don’t tell me that I’m not.

There is a middle ground between “tragically broken” and “just differently abled!” And I feel that a lot of us exist in that middle area. The narrative I’m seeing pushed by other autistic folks lately is that we are “only disabled by society/capitalism” and that statement is incredibly dismissive to those who are like me. I’m even what they call “high functioning” (now better reframed as low support needs). I have a steady job. I have an apartment. I have a lot of independence and freedom in my life. All of this is true and I am still disabled.

So why is it that it’s not just “society” that disables me? Capitalistic, ableist society absolutely makes life as a disabled person worse. I’m not saying it doesn’t. However, we could live in a utopia, and at the end of the day, I will still struggle to take care of myself. The part of my brain that controls executive functioning does not work as well as a neurotypical’s. That is a fact. This is where folks start to tell me “but why does it matter? If we all had support needs met, it would be fine.” I even had someone insist that communal living would eliminate disability. It’s insulting. Communal living is not ideal for everyone. How many of us need time alone? Would this ideal world just have some personal assistant that follows me everywhere, remembers the things I forget, and does everything for me, while also managing to not overwhelm me?

Let’s look at this another way. I suffer from chronic migraines. This is also disabling to me. Because of my migraines, I can’t always do things other people can. However, I have a medication that stops the onset of migraines. We could call that a support. The fact that this medication exists is life changing. However, it isn’t going to work every single time. Sometimes I’ve waited too long to take it. It also takes over an hour to kick in. If I don’t eat before I take it, it wrecks my stomach. I’m going to take it, because it’s better than sitting through a migraine. But my life would 100% be better if I just didn’t suffer from migraines.

I realize this comparison is flawed, and I own that. I think most people would agree with me that there are no positive aspects of migraines. There are absolutely positive aspects of autism and I am not discrediting that. I like my creativity, my passion for justice, thinking outside the box, and my empathy. All of these things are positives that I directly attribute to my being autistic.

But to tell all autistic folks that “we are not disabled” is a blanket statement and honestly, a lie. A harmful one at that. Even if someone could think of a utopia that fit everyone’s needs, it isn’t our reality and probably never will be. You can push for that utopia all you want. I’m not discouraging you. What I’m discouraging is telling someone else whether or not they’re disabled, or making blanket statements for all of us based on your own experience or idea. Think about what the word disability means. Not able. There are things we are not able to do. We need supports. And, if we want to look at a social model of disability, like our SSDI system in America, it’s already incredibly hard to get supports.

Now, beyond the social model and “utopia” talk. With supports, I am still disabled. The supports I can get do help, but they are a band aid that I still feel like I’m bleeding through sometimes. I have friends in my life that will and have come over to help me clean when I felt like I was drowning. You can argue that cleaning is a social expectation, sure, but my inability to stay organized is detrimental to me even if no one ever came over or saw my space. I’m not even talking about getting it sparkly clean, but even getting to a functional space is a constant stressor. Not being able to find things I need. Mess piling up in a way that can turn unsanitary. How many of us struggle to brush our teeth regularly? That is something that literally affects our health. Even if I’m not worrying about what others expect me to do, I’m still going to wish I could even get myself to do things I want to do, like making art.

I haven’t even gotten into the fact that some sounds physically hurt me, or the fact that my SPD affects my ability to sleep, which affects my physical health. Or the physical ailments that often accompany autism like gut issues.

I’m not “pro cure” and I want to make that absolutely clear. I do value myself and being autistic does make me unique in ways I wouldn’t want to change. But to only acknowledge the positive and not the disabling factors many experience is going to cause us even more struggle to get help for those things. I don’t want to delete autism from the gene pool. I do want treatments targeted at symptoms to be studied more so they can be improved.

And I especially want others, whether it’s neurotypicals or other autistic folks, to stop defining me. Again, I’m not a tragedy or inspiration, nor am I an indigo evolution of mankind. I’m not even “differently abled.” I am disabled, and that’s okay.

Let Others Help You

Alternate title: The Importance of Finding Your Community

Saturday was my birthday, and I had planned to have some friends over, eat pizza, and play some games.

I’ve been fooling myself for the past month, thinking I could get my apartment clean for this. There were little bursts and strides, like re-organizing all my clothes, but there were also setbacks, like knocking my entire plant shelf over before bed last week and just having dirt all over my kitchen floor.

If you’re neurodivergent, you probably know about, and have struggles with, Executive Dysfunction. The duo of Executive Dysfunction and chronic fatigue have been the bane of my existence.

A lot of people in the groups I’m in suggest body doubling (having someone to hold you accountable), or hiring help. I have struggled with this, still feeling my apartment was not presentable enough yet to accept help without being embarassed. Also I am very weird about strangers touching my things, so even if I had the money, a cleaning service would be a no-go for me.

I debated canceling my birthday shindig. I was rushing and panic cleaning and my apartment was still gross. My kitchen floor was still nasty. And I resented myself every time I needed to rest.

As I was about 2 hours from the time people were supposed to arrive, I caved. I asked 2 friends and my partner if they could come early to help clean, apologizing profusely. The four of us each tackled a room. I felt frantic because they were faster than me, and my brain was trying to process 800 things… but it had also been like that all day. Running into rooms trying to remember what I was doing and seeing a mountain of things to do and freezing. It was also frantic with the guilt that everyone was doing stuff and I kept freezing like this.

But, I have good people in my life. Most of my friends are neurodivergent themselves, so there is so much empathy within my community of chosen family. It was interesting to see everyone’s cleaning styles at work- my partner focusing on practicality, making pathways in my room. My one friend was very careful and mindful about asking me where things go. My other friend just dove right in.

It wasn’t perfect. We still shoved doom boxes in the closet. But, my floors were clean. My rooms were clear. 4 people cleaning changed my timeline of months of work done in an hour. I felt a huge weight of stress lift as I could look at a room and not see chaos. I tried not to feel guilty, reminding myself it was my birthday and trying to think of the help as a present. However, it blows my mind to know that these people would have done this even if it weren’t my birthday.

When I step back and think about this, I remember that I also would and have done this for others. I don’t think I’ve ever been upset when a friend reached out for help. Our brains also fundamentally run differently when it’s not our own mess. A few years back, a friend was at risk for being evicted because their apartment was messy. I went over to help and, in that situation, they were the one freezing at tasks and I was the one just grabbing and doing things. Things look different when you don’t have the bias of having looked at clutter for so long that it blurs together.

I think, in a culture where many of us weren’t surrounded by compassion, and instead we existed in a neurotypical-led society where the message was that we “should be able to do that,” followed by shame, hiding our mess, and even trauma, the idea of asking for help feels incredibly vulnerable. This is true for all kinds of help, not just cleaning. Between shoving things in closets and masking our neurodiversity, we desperately try to make ourselves “tidy enough” to be palateable for neurotypicals.

It’s such a juxtaposition to expect ourselves to function at a neurotypical level without any help. Even able-bodied, able-minded folks are struggling in our “hustle” culture to stay on top of everything.

What if, instead of shaming and exhausting ourselves, we built communities instead, where we all pitched in and helped each other? How much smoother would our lives run if we had and accepted these communities instead of expecting ourselves to operate in solititude?

The Autistic Book List

Hello! So, I haven’t posted on here in a while, and part of that is because I have been so absorbed in a project I wanted to make a reality.

As an autistic library professional, a huge career focus for me has been to highlight neurodiverse reads and OwnVoice books. When searching for titles for the collection, it felt like I always had 80 tabs open. There was no really thorough/complete list I could find. So, what started as a work project compiling my library’s autistic reads turned into creating a massive list of autistic reads.

The concept was more than a bit daunting– organizing all the scattered lists into a Word doc and then into a detailed Excel sheet. But, I am so happy I was able to make this.

I hope this will be useful to you folks, especially for boosting materials that may have been overlooked.

Eventually, I will add a list of autistic authors (since there are many autistic authors out there that don’t necessarily include autism in their stories), but for now, take a look, and if you have suggestions I can add, I definitely will!

The Autistic Book Masterlist

Ode to Deaf History and Activism

To begin, I want to share the disclaimer that I am NOT d/Deaf or hard-of-hearing. I’d like to honor the Deaf Community and recognize them, but I will not speak over them. If I post something incorrect, I will absolutely correct what I’ve stated.

I want to share some contextual info for some of the language used in this post.

deaf, with a lowercase d, simply describes the medical condition of not being able to hear. It is a general term.

Deaf, capital D, is a cultural identity with a shared language. Most Deaf people do not consider themselves to be “disabled” but different, similar to the concept of Neurodiversity.

d/Deaf is a way to include both generally/medically deaf individuals and culturally Deaf individuals.

Today is April 15. Today is the last day of Deaf History Month (March 13 – April 15) which partially intersects with Autism Acceptance Month (April). Like these months, I’ve found overlap between what the autistic community has gone through and what the Deaf community has gone through.

In college I took ASL 1 and 2. Going into this, I thought I was just learning a language, and that language in my imagination was just a translation of English.

This was incorrect. ASL is far from signed English. It is its own language, with its own grammar, dialects, and inflections. Also there was no way to correctly learn sign language without learning the history and culture surrounding sign language. I felt an emotional connection with what I was learning because of the similar-but-different ways autistic individuals and d/Deaf individuals have been marginalized and fought for rights.

Autistic folks and deaf folks both have a history of being institutionalized, misdiagnosed, and a lack of acceptance of our communication needs.

Both communities have been pushed to fit into a “normal” world instead of being allowed to thrive as who we are. With autistic folks, we have been punished for stimming, for not making eye contact, for not acting neurotypical, and for wanting nonverbal communication methods. Likewise, deaf individuals have historically been punished for not speaking/comprehending, barred access to sign language, and have been misdiagnosed. Many hearing (non-deaf) parents and professionals feared that allowing children to learn sign language would cut them off from society. Instead, these children were tediously taught to read lips and pronounce words.

Our society so often tries to force everyone into a mold. A one-size-fits-all education, communication, and assimilation that ends up “othering” and ostracizing those who could be living more comfortable and accessible lives.

Deaf activists have fought for acceptance in a similar way to autistic activists. Allowing deaf children to learn sign language has not only improved communication, but has allowed for a Deaf community to flourish.

Deaf President Now was a protest that occurred at Gallaudet University (the first Deaf college in the US). Prior to this 1988 movement, the presidents of Gallaudet had all been hearing and students did not feel represented. This hit home as an autistic person not seeing myself represented in major autism organizations. The Autistic Self Advocacy Network’s phrase “Nothing about us, without us” rings true for many marginalized communities. Harmful treatments for autistic and deaf children is a hot topic in both communities. Those “inspirational” videos about a child getting a cochlear implant and hearing for the first time always make me cringe, both because of the way it treats deaf individuals as “broken” and in the knowledge that many children can’t consent to having a surgical procedure that could cause lifelong complications.

Deaf President Now protest

Obviously, the struggles of the Deaf community and autistic community are going to be different, and while there is overlap, it’s important to acknowledge the many differences that exist, including cultural. One thing I think we as an autistic community could learn from the Deaf community is our comradery with other autistic folks. I think the internet and social media have improved our ability to find and connect with one another, but imagine how much more we could achieve with strength in numbers. I’m optimistic, as I see the world shifting and see more neurotypicals listening, and harmful organizations gaining less traction. I hope then that the Deaf community will see more acceptance as sign language becomes more of a norm, and deaf children will stop having access blocked when hearing people are seeing the benefits even for their hearing children.

I can only wonder how the intersection feels to someone who is both d/Deaf and autistic. I posted on multiple platforms to try to find someone to interview for this post, but whether I was in the wrong places or people didn’t want to do that emotional labor (which is valid), I couldn’t find anyone. I can’t fully speak on the matter as someone who can only relate from one side, but if anyone would like to share their thoughts and opinions, I am happy to lift your voices on here and my social medias.

I hope to see more marginalized communities working together and learning from one another. Again, the experiences of different communities will not always overlap, but our own experiences should make us more empathetic to the struggles of others.

I went to a protest

This weekend, I went to a Black Lives Matter protest.

Why did I go? A few reasons.

-I am queer. My own community would not have the rights it has right now if we had not rioted against police brutality at Stonewall. This is celebrated every June. The Stonewall riots were started by a black trans woman named Marsha P. Johnson. The Black Panthers backed us. It’s our time to back them.

-I am autistic. Police still unfairly and violently respond to autistic people in distress. I am fortunate, but still not ok, that my worst experience with police was being patted down for drugs, at 9am, dressed in work clothes, on my way to work, because I was acting strange. I am privileged that I mask (appear non-autistic) well enough and appear non-intimidating enough to have only gotten patted down. My strange behavior could have gotten me arrested or killed if I were black. Autistic people, including teenagers, have been considered a threat to police for acting odd. Even when a teenage boy said “I’m autistic. I’m stimming,” he was still manhandled and traumatized because the officer didn’t know what that meant.

-Most importantly, I care about black lives and injustice. Even if I had never had bad experiences with police, I still hurt for those hurting. I still feel the anger and loss of another community, and even if I can never fully understand, I care.

Intersectionality is incredibly important to me, and should be to you too.

I want to also address, I am incredibly privileged to be where I am on the spectrum. The protest was HARD on me, let alone someone with worse SPD or more needs.

So, I want to mention that if you can’t protest because of your needs, your health, etc, I am absolutely not condemning that or trying to say “I’m autistic and I was there. Why weren’t you?” That’s gross. I absolutely respect those of you, autistic or not, who had reasons they couldn’t show up. But if you can, please consider advocating for others (and yourself) by sharing information, calling out others (again, if you can. I can get nonverbal when upset so that’s actually harder for me than marching), and donating to organizations if you have the money.

Back to the protest though. I want to share my experiences.

I was fortunate that the protest was organized well, passed out masks and water, and people seemed to respect my space. Social distancing could not be 100% sheerly for the volume of people there, but I never felt trapped or claustrophobic.

The protesters were peaceful. The organization expressed they did not condone violence.

Unfortunately, that was not the case for the police. I never felt threatened or scared of my fellow protesters. There weren’t many counter protesters, but we simply walked past them. However, when we surrounded a certain building, police began to throw tear gas and explosives off of rooftops. After that was when people began to destroy things (still not other people, and also arguably the police or saboteurs. The agitators had not been identified.)

A few things that happened that were notable:

Despite this being a protest for black justice, multiple times white people tried to take the lead, and when they did, the chants were much more aggressive. (We typically chanted Say his name / George Floyd). When the white people who brought megaphones (after leaders expressed multiple times for us not to take the mic), their chants were more aggressive. “F*ck the police.”)). I was happy to see so much diversity in who showed up, but disappointed that even in matters of black justice, white people felt entitled to control the movement. That doesn’t just affect us, but affects the perception of the BLM movement.

However, most people were still there to help, checking in on others, passing out water and first aid. When the explosions happened near me, I jumped and covered my ears. At on point, a group of POC protesters pulled me under an overhang away from where rubber bullets were being shot. (Normally, I’d be upset at strangers touching me, but bless these people for protecting me).

I wish I could have been on the front lines, but I was terrified. I don’t think I could have composed myself enough to join the wall of white bodies protecting black bodies. I stayed longer than I thought I would though, and tried my best to help others as they had helped me.

By the time I left, most of the city was blocked off, including the public transit area I had arrived on. I had to walk 2 miles to get to a train.

Again, I have to express how grateful I am for my able-bodied privilege. There were people in wheelchairs there, and people who were injured, turned away from public transit and safety, by those who “protect and serve.” (only property, apparently). Forcing them away from easy routes out of the city meant that cops were trapping people into the area, some of the most vulnerable. And to make matters worse, arrests were beginning at a certain time if people didn’t leave.

Even though some people could not.

It felt dystopian. It is dystopian. If you rooted for Katniss, for V and Evie, for Jean Valjean, for Shuya and Noriko, and even in history- for the Boston Tea Party, for Rosa Parks, for Malala, for Harriet Tubman, for the Allies in WWII, you need to root for the people now. Silence is violence, and it has always been that way.

I have disabled comments, as this is not open for debate. If my politics bother you, you are welcome to unfollow me. But if it bothers you when an allistic person tells an autistic person how to be, think, feel, and advocate, you should not tone police how Black POC are protesting. I am white, and can only share my experiences as such, but whether or not POC had reacted in anger or peace, it is not my place to judge or decide.

Thank you for reading.

Autism Acceptance Month: Day 30

April is over in 1 hour, and it’s very weird. This was probably my least triggered April, due to COVID-19 and the stay-at-home order. I only really went out for groceries, so I wasn’t flooded in a sea of blue and fake acceptance. But it’s obviously a conflicted feeling, knowing the reasons WHY I avoided the blue mess. So, the final prompt is simple enough…

April 30: What would you like your final message of Autism Acceptance Month to be?

…however, I am struggling to think of what to say. I think throughout the month, I’ve covered a wide range of topics, both personal to me and to the autistic community. So, I don’t have a slew of information on any particular subject to talk about. I just want to say thank you to those that have been reading my posts, and I hope you will continue to advocate for us and yourselves beyond April.

Have a fantastic May everyone!

[[Image description: Justin Timberlake, circa his days of N*SYNC and ramen noodle looking hair, captioned “It’s gonna be May”]]

Autism Acceptance Month: Day 29

April 29: Why is acceptance important? What does it mean to you?

Acceptance goes beyond “awareness.” It means acknowledging that we exist, are not a disease or a bad thing, and that we don’t need to be cured. To accept autism is to accept one as they are, instead of trying to change them. It also goes beyond empty words, in my opinion. You can claim you accept something, but still not show that in your actions. Autism acceptance is allowing us to exist as ourselves, giving us a space in the world, and listening to us. Self-acceptance is also just as important. It’s hard to accept yourself when society doesn’t, but we need to be gentler on ourselves, forgive ourselves, and be ourselves.

Autism Acceptance Month: Day 28

April 28: Are you LGBT? Discuss the intersection between both identities.

I am. I typically just call myself gay. It gets complicated as we learn more about gender and it becomes more of a spectrum. I’m not attracted to hyper masculinity, or men (cis or trans). I am attracted to women and nonbinary folk. It especially gets complicated and muddled when I’m not 100% certain on my gender identity. It’s kind of… nonbinary demi-girl?

I made a blog recently about the term “autigender.” But basically, to TLDR it, autigender is the relationship between autistic people and gender. It’s not a gender, like how trans or cis is not a gender- it’s a relation TO gender.

I think being on a spectrum allows us to see life more as a spectrum. That and not really believing in a lot of social rules like gender roles, I think it allows us to see gender and sexuality in a spectrum rather than rigid terms that society sees.

Autism Acceptance Month: Day 27

April 27: Do you have any vocal stims or echolalia? Can you give any examples?

I’m not sure. I get songs stuck in my head, or phrases, but I wouldn’t consider them stims. They’re more annoying than anything else– especially the phrases. (Lately my mind keeps repeating the phrase “hop skip and a jump away” and I’m like… why? I don’t really say it aloud though so I’m not sure if that counts.)

So short answer… I don’t think I have vocal stims but I do get echolalia. For those that aren’t familiar with the term, echolalia is repetition of a phrase you’ve heard. I tend to accidentally repeat specific words back to people I probably wouldn’t have said if I didn’t just hear them say it.

Autism Acceptance Month: Day 26

April 26: In what ways can allistic people better accommodate you and other autistic people? What would you consider helpful?

I think first and foremost, just listening to us and giving us a platform to speak instead of speaking over us. Fostering environments where it is welcome and safe to express our needs. Also, I think for public venues and events, there should be quiet rooms/quiet areas for people feeling overstimulated.

My workplace is considered, I think it was “sensory friendly.” They have a partnership with KultureCity, which is a group trying to make spaces more accessible to autistic people. I have a few issues with their organization such as wording, but after emailing them, they were receptive and they do have autistic people working for them trying to change the attitudes of others. –Back on topic, we have these sensory kits around, which just about never get used sadly. I’ll occasionally mess with the fidget toys in them, but the noise canceling headphones are child-sized. So I think making the conversation include autistic adults would be helpful.