Amelia Blackwater

@amelia-blackwater | contributor
Mighty LeaderSuper Contributor
Amelia Blackwater is a chronic illness and mental health writer and poet. She graduated from CSUSB with a BA in Creative Writing in 2011. She finds therapy in writing about her experiences living with CHD, migraines, multiple mental health problems including C-PTSD, Anxiety Disorder, OCD, and recovered Eating Disorder She recently is on the mend from her third open heart surgery. Follow her journey on Instagram @ameliablackwater

How My Autism Affects These 5 Everyday Tasks

I love being autistic. But I’ll be honest, there is some stuff that I don’t like about being autistic, and that’s OK. It’s the little everyday things I struggle with that I notice most people don’t. Things that everyday people take for granted or might not understand why someone who is autistic has a hard time with them. It takes time to learn what accommodations I need and how to advocate for myself when I need help. Here are five ways my autism affects doing everyday things, and ways to help when it can seem like too much. 1. Being touched. Many people show their love by touch — a hug, holding hands, a kiss on the cheek, a pat on the back. I’ve always had the hardest time with people touching me. It can be painful. There are a select few that I will let hug me and it usually helps if I can initiate the hug. Things that help me cope with being touched are setting boundaries. I will put out my hand first for a handshake or fist bump or I’ll just wave hi to someone. When it comes to doctor’s appointments it helps if someone explains where they are going to touch me and what they will be doing. I’ve made sure there are notes in my files so my doctors know how to approach me when doing an exam. 2. Eating. My issues with interoception play a big part in my eating habits. Interoception is the sense of your internal body and understanding the signals that your body is sending to your brain. I can have trouble understanding how my body is feeling which can make it hard to determine if I’m hungry or not. I can also get very hyper-focused and forget to eat. I don’t do very well with menial tasks. I have to find a way to trick myself into believing that I’m still productive when I’m taking care of myself. When I’m hyperfocused on something, I set timers and alarms for myself. This can help remind me that I should stop for a bit and go eat. Another thing that helps me is setting a schedule, that way I get into a routine of eating at the same time every day. 3. Taking a shower. Because of sensory issues, I often have trouble taking a shower or bath. Showers can be a bit abrasive, the hot and cold of getting out of the shower can make me not even want to get in. During the winter I get so cold and I hate getting in and out of the shower because of the frigid temperatures. I’ve found that having a little heater in the bathroom can really help me with extreme temperature changes. I also have this sense that I could always be doing something better. Sometimes I can go a couple of days not taking a shower just because I’m focused on other things and I would rather be doing them than have to take a shower and do menial tasks. To help with this feeling, I’ve learned that listening to music or an audiobook helps me with feeling like I’m not “wasting my time.” It can also help me stay in the shower longer and clean myself better because I’m enjoying listening to something. 4. Wearing clothes. My style and what I’m wearing are determined by how I feel in clothes. Tags, textures, and fabrics can all cause sensory issues. It can be hard sometimes to buy clothes online because I’m not sure how the clothes will feel and if I like the texture and fabric. I’ve learned that there are just some fabrics I can’t handle. I mostly like wearing cotton. I almost always wear cotton leggings and an undershirt under all my clothes. This can help with the feeling of other garments I have on. I also make sure to take all the tags off my clothes. 5. Going to the store. Supermarkets are loud and malls can be sensory overload. While I like shopping for certain things I can easily get overwhelmed and have meltdowns in stores. I am best when I can do things in a controlled environment and I can expect what will happen. If a store I go to is busier than usual this can mess with the plan I had or how I predicted the day to go. Things that help are checking the store’s busy hours and trying to go during times when there are fewer people in the store. When I’m going to the store, I always make sure I have headphones or earplugs with me and a stim toy. This helps with the sensory issues I have when shopping. If I can, I will also shop online instead of going to the store. Do you have trouble with any of these tasks? How does autism affect doing everyday tasks?

Why Companies Need to Embrace Disability Pride Month

It’s July and I’m walking through my local Target’s clothing apparel. Their Pride line is slowly moving from its featured location to being incorporated into each brand’s section. I look eagerly hoping for disability pride merchandise, a shirt, a pin, or a flag, but I find nothing. It’s not just at Target that Disability Pride month has been ignored, it’s most retail companies. I don’t see Disability Pride Month being acknowledged in commercials. I don’t see cool playlists for disabled directors or actors on subscriptions like Netflix or HBOMax. I am disappointed and confused about why disabled people are not being represented and celebrated by major companies this month. So, why is Disability Pride month still not seen in mainstream media, clothing companies, and retail locations? One of the reasons I believe disability pride doesn’t get the visibility that other pride and awareness months do is that disability is still seen as a tragedy. Why would people want to take pride in tragedy? Yes, there are tragedies that can cause a disability. But, that doesn’t have to mean that disability is a tragedy. Having disability pride does not erase the fact that being disabled is hard. We all become disabled at some point in our lives if we live long enough, whether it’s progressive, an accident, or we were born with it. If we aren’t disabled ourselves, we know someone who has some form of disability. Disabled people are everywhere, and many have invisible or hidden disabilities. It’s important for all people to be represented in the mainstream, not just during awareness and pride months. But it is just as important for our pride months to be recognized as they can often reach a larger audience, usually with the help of mainstream companies and media. This year just like many before, mainstream companies have chosen to ignore us. Awareness and pride months are important because it’s a time to counter old beliefs and stigmas. It’s a time for other narratives to be told and for the invisible to be seen. For our children to see themselves. To remind them it’s OK to be proud of who you are. As a child, I never saw my disability anywhere. I wasn’t taught about the disability movement in the 1960s or the ADA. Instead, I was taught to hide my disability for fear of being bullied or told I was seeking attention or being met with sympathy. We are not born with shame, we are taught it. Those stigmas prevented me from getting the help that I desperately needed when I was a teen. I lived in a small town in the 90s and 00s and didn’t know anyone like me with a disability. The only time I saw someone who was disabled in mainstream media, they were filling certain tropes such as inspiration porn, the bitter disabled person, or a character that was supposed to be pitied. Disability was always seen as a tragedy, but my life was more complex than that. In my mid-20s, I finally found my voice and others like me. Social media has been a revolution for disabled individuals and advocates. We are finally finding a community, telling our stories, and feeling less isolated and alone. But if you don’t follow someone who is disabled, you might not know about this revolution. We are still a hidden minority, still fighting to be seen. So this Disability Pride Month, I’m looking toward the big companies. I’m not just asking for a cute disability pride t-shirt and merchandise, I’m asking to be seen. I want everyone to know that this month is Disability Pride Month, especially if it makes people start to question their beliefs on disability.

Why Companies Need to Embrace Disability Pride Month

It’s July and I’m walking through my local Target’s clothing apparel. Their Pride line is slowly moving from its featured location to being incorporated into each brand’s section. I look eagerly hoping for disability pride merchandise, a shirt, a pin, or a flag, but I find nothing. It’s not just at Target that Disability Pride month has been ignored, it’s most retail companies. I don’t see Disability Pride Month being acknowledged in commercials. I don’t see cool playlists for disabled directors or actors on subscriptions like Netflix or HBOMax. I am disappointed and confused about why disabled people are not being represented and celebrated by major companies this month. So, why is Disability Pride month still not seen in mainstream media, clothing companies, and retail locations? One of the reasons I believe disability pride doesn’t get the visibility that other pride and awareness months do is that disability is still seen as a tragedy. Why would people want to take pride in tragedy? Yes, there are tragedies that can cause a disability. But, that doesn’t have to mean that disability is a tragedy. Having disability pride does not erase the fact that being disabled is hard. We all become disabled at some point in our lives if we live long enough, whether it’s progressive, an accident, or we were born with it. If we aren’t disabled ourselves, we know someone who has some form of disability. Disabled people are everywhere, and many have invisible or hidden disabilities. It’s important for all people to be represented in the mainstream, not just during awareness and pride months. But it is just as important for our pride months to be recognized as they can often reach a larger audience, usually with the help of mainstream companies and media. This year just like many before, mainstream companies have chosen to ignore us. Awareness and pride months are important because it’s a time to counter old beliefs and stigmas. It’s a time for other narratives to be told and for the invisible to be seen. For our children to see themselves. To remind them it’s OK to be proud of who you are. As a child, I never saw my disability anywhere. I wasn’t taught about the disability movement in the 1960s or the ADA. Instead, I was taught to hide my disability for fear of being bullied or told I was seeking attention or being met with sympathy. We are not born with shame, we are taught it. Those stigmas prevented me from getting the help that I desperately needed when I was a teen. I lived in a small town in the 90s and 00s and didn’t know anyone like me with a disability. The only time I saw someone who was disabled in mainstream media, they were filling certain tropes such as inspiration porn, the bitter disabled person, or a character that was supposed to be pitied. Disability was always seen as a tragedy, but my life was more complex than that. In my mid-20s, I finally found my voice and others like me. Social media has been a revolution for disabled individuals and advocates. We are finally finding a community, telling our stories, and feeling less isolated and alone. But if you don’t follow someone who is disabled, you might not know about this revolution. We are still a hidden minority, still fighting to be seen. So this Disability Pride Month, I’m looking toward the big companies. I’m not just asking for a cute disability pride t-shirt and merchandise, I’m asking to be seen. I want everyone to know that this month is Disability Pride Month, especially if it makes people start to question their beliefs on disability.

Why Companies Need to Embrace Disability Pride Month

It’s July and I’m walking through my local Target’s clothing apparel. Their Pride line is slowly moving from its featured location to being incorporated into each brand’s section. I look eagerly hoping for disability pride merchandise, a shirt, a pin, or a flag, but I find nothing. It’s not just at Target that Disability Pride month has been ignored, it’s most retail companies. I don’t see Disability Pride Month being acknowledged in commercials. I don’t see cool playlists for disabled directors or actors on subscriptions like Netflix or HBOMax. I am disappointed and confused about why disabled people are not being represented and celebrated by major companies this month. So, why is Disability Pride month still not seen in mainstream media, clothing companies, and retail locations? One of the reasons I believe disability pride doesn’t get the visibility that other pride and awareness months do is that disability is still seen as a tragedy. Why would people want to take pride in tragedy? Yes, there are tragedies that can cause a disability. But, that doesn’t have to mean that disability is a tragedy. Having disability pride does not erase the fact that being disabled is hard. We all become disabled at some point in our lives if we live long enough, whether it’s progressive, an accident, or we were born with it. If we aren’t disabled ourselves, we know someone who has some form of disability. Disabled people are everywhere, and many have invisible or hidden disabilities. It’s important for all people to be represented in the mainstream, not just during awareness and pride months. But it is just as important for our pride months to be recognized as they can often reach a larger audience, usually with the help of mainstream companies and media. This year just like many before, mainstream companies have chosen to ignore us. Awareness and pride months are important because it’s a time to counter old beliefs and stigmas. It’s a time for other narratives to be told and for the invisible to be seen. For our children to see themselves. To remind them it’s OK to be proud of who you are. As a child, I never saw my disability anywhere. I wasn’t taught about the disability movement in the 1960s or the ADA. Instead, I was taught to hide my disability for fear of being bullied or told I was seeking attention or being met with sympathy. We are not born with shame, we are taught it. Those stigmas prevented me from getting the help that I desperately needed when I was a teen. I lived in a small town in the 90s and 00s and didn’t know anyone like me with a disability. The only time I saw someone who was disabled in mainstream media, they were filling certain tropes such as inspiration porn, the bitter disabled person, or a character that was supposed to be pitied. Disability was always seen as a tragedy, but my life was more complex than that. In my mid-20s, I finally found my voice and others like me. Social media has been a revolution for disabled individuals and advocates. We are finally finding a community, telling our stories, and feeling less isolated and alone. But if you don’t follow someone who is disabled, you might not know about this revolution. We are still a hidden minority, still fighting to be seen. So this Disability Pride Month, I’m looking toward the big companies. I’m not just asking for a cute disability pride t-shirt and merchandise, I’m asking to be seen. I want everyone to know that this month is Disability Pride Month, especially if it makes people start to question their beliefs on disability.

Community Voices

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Hey Educators, Let's Stop Comparing Our Students' Disabilities

I’ve been working in special education for almost 10 years, and one of the things that frustrate me the most is when I hear teachers compare their student’s abilities to that of other students. I was once a student with a disability in the education system. Growing up, I always had trouble in school. I had a congenital heart defect, and because my disability wasn’t visible, I was always pushed to do things my body couldn’t do. One of the areas was in P.E. I was often told I had to run a mile but I physically couldn’t do it. When I said I couldn’t, I was seen as defiant, and my dad would be in the office fighting with the administration the next day. I switched schools constantly because of teachers pushing me beyond my physical limitations, and I was soon seen as a kid who just exaggerated things and had overprotective parents. When I got into middle school my undiagnosed autism started to become more of an issue. Where I once was an A student, my grades started falling, and I was seen as a gifted student that was just “lazy.” Society has been conditioned to compare. We often hear things like, “That person has it so much worse, so why don’t you try harder.” “If they can do it, then you have no excuse.” This thinking is deeply rooted in ableist ideas and inspiration porn. One of the things I try to remind educators when they see a student who seems like they are being lazy, not doing work, or distracted, is that we aren’t in their body or their mind. We are complex creatures and disabilities present differently in everyone. Many disabled students have multiple disabilities, chronic illnesses, and/or mental illnesses. These comorbidities can dramatically affect a student’s primary disability. One person with ADHD, autism, cerebral palsy, Down syndrome, lupus, anxiety disorder, etc. isn’t the same as another. Learning how your specific disabled student functions and thrives with their disability is the path to their success. I’ve seen a lot of educators get frustrated with a student when they compare them to someone who they deem as needing high support or who they think has it rougher than others. These assumptions are often based on the awkwardness of a student, their social interactions, how they communicate, or their physical limitations. They see these kids and determine that if they can get good grades and be a good student, then a student who might have a similar diagnosis and isn’t doing work must mean they are lazy or could do more if they only tried. For students who have an invisible illness, people might have less empathy towards them in comparison to other students who have a visible disability, or whose disability presents in a way that is more obvious. We think of those kids who are constantly going to the nurse as engaging in task avoidance instead of trying to understand how a disability might cause a child to go to the nurse’s office more frequently. Shifting our educators’ focus from comparison to acceptance, understanding, and education on how disabilities present differently in each person can really help our disabled students succeed. Just because one person can do a task a specific way does not mean another can do the same. Disabled students deserve an understanding of how their disability affects how they learn. Educators, stop comparing students’ disabilities and start educating yourself on ways to help our disabled students thrive.

Mental Illness Is a Disability, and That’s OK

When I was younger, every time I heard the word “disabled,” I would picture someone who was in a wheelchair. When I became more involved in the disability community the definition of disabled changed. I realized that the word “disabled” incorporated many conditions that were visible and invisible. Today I want to go further than just invisible physical disabilities. I’ve noticed that not many people talk about mental illnesses becoming a disability. Mental illnesses are considered invisible. You can not see if someone has an anxiety disorder, obsessive-compulsive disorder, PTSD, bipolar disorder, schizophrenia, major depressive disorders, and many other mental illnesses. When you have an invisible disability it can be hard for people to take your condition seriously. Many mental illnesses can dramatically affect how someone functions in the world. Throughout my life, I’ve dealt with depression, OCD, eating disorders, and PTSD. My mental illnesses can sometimes affect my work and limit my activities. When I was in college my OCD impacted my driving ability, it made me consistently late, and it affected my relationships. My PTSD can stop me in my tracks. Flashbacks can hold me hostage. My mental illnesses are a disability. They make me disabled and that’s OK to say. Using the word disabled to explain how my mental state affects me can be very helpful when describing to others what I go through. So what defines being disabled? The dictionary definition of a disability is:1) A physical or mental condition that limits a person’s movements, senses, or activities.2) A disadvantage or handicap, especially one imposed or recognized by the law. Stop gatekeeping the word disabled. The disabled identity can be extremely important when learning how to accept your limitations. Those with a mental illness need to be able to identify with the word disabled. We have to be careful when gatekeeping the word disabled. The word disabled doesn’t mean that someone is unable to work due to a disability. It also doesn’t mean that you have to have a physical disability. Many disabilities are invisible, including mental illnesses. You can still be disabled even if you don’t receive disability payments from the government. The keywords in the definition of disability are that a disability can be “a physical or mental condition.”  While part of the definition suggests that a disability can be recognized by the law such as receiving disability pay, that doesn’t mean that if you do not receive disability from the government, you are not disabled. Certain mental illnesses fall under this category, as they can be debilitating and can significantly affect someone’s life. While some people who have a disability rely on government aid due to not being able to work, not all disabled individuals are on disability aid. Many are still able to work but their mental condition limits them. Mental illnesses can affect relationships both romantically and socially, such as an anxiety disorder that prevents someone from being able to socialize and causes severe stress. Since I’ve started referring to my mental illnesses as a disability, it has helped me give words to what I go through and how my mental illnesses can be disabling. I can explain to others why I’m having a hard day. I can ask for accommodations if needed. Claiming the word “disabled” empowers me.

Why Going to Movie Theaters Is Hard as an Autistic Adult

It’s summertime and all the nerdy blockbuster hits are coming to theaters. My love for all things nerdy (especially movies) has always been there. As an autistic child, I loved going to the movies and being immersed in another world. But as I’ve grown into adulthood, I’ve found I have a love/hate relationship with going to the movie theater. With technology and the internet, it’s so important to see blockbuster hits such as Marvel or Star Wars as soon as possible or the movie might be spoiled. So, I try to see these movies as soon as they come out. But as society has changed, so has going to the theater. During the pandemic, I loved that you could watch newly released movies at home. Since the restrictions have been lifted, so have some of the accommodations. Why are movie theaters hard as an autistic adult? 1. The need to be there super early. I get anxious if I’m not at the movies at least 30 minutes before the movie starts — 45 minutes if anyone is wanting popcorn. This isn’t just because I’m worried about getting a seat. It’s also because I don’t want to miss anything. I want the time to be able to get snacks, go to the bathroom, and find my seat without being rushed. There have been times when I’ve gotten to the movies right when the previews started, which usually resulted in a meltdown. 2. Anxiety about seating. While having reserved seating can help calm this anxiety, I still worry about who is going to sit next to me, if they are going to talk through the movie, have their feet on the back of my chair, or if they are coughing and sick. I’ve been known to change seats just because of people near me. 3. Movie theaters don’t display closed captioning. While it is possible to get a closed captioning device at some theaters, they are often cumbersome and frustrating. It’s hard to see the captions and pay attention to the movie, since they are on different screens. Sometimes the music can be too loud and the voices too quiet and it’s hard to pay attention to the dialogue and watch the movie at the same time. 4. Movie theaters can be uncomfortable. It can be hard to get comfortable in stiff seats. Even the ones that recline aren’t always comfortable. I love being able to curl up on my couch at home and watch movies. I can stim and get as excited as I want to. However, in theaters, there are different rules for how you are expected to behave, and I often find myself masking my autism. 5. There are a lot of distractions. You can’t control what goes on in the theater. People may talk, walk in front of you, or be on their phones, which can be hard as an autistic. Things like this take me out of the movie and make it hard to enjoy the theater. I hope that in the future more movies will come back to being on demand and in the theaters. Movies at home make entertainment accessible to everyone, not just to autistics.

Monika Sudakov

Endometriosis: A Humorous 'Restaurant Review'

Frankly, it wasn’t my idea to try endometriosis, but I wasn’t given a choice in the matter, so my review is partly illustrative of feeling like I didn’t have any control over the situation. I understand that others might have a different perspective on it, but I’m willing to bet that many will resonate with my overall assessment of my experience. Service: Spotty and Inconsistent The staff were undertrained, inattentive, and inconsiderate. They were unwilling to accommodate my unique requests and made me feel like I was an inconvenience for even asking to get my needs met. Additionally, we felt rushed to get in and out so that they could get to the next patron, which is a particular pet peeve of mine. Food: Bland and Carelessly Prepared I’m not entirely sure what they did wrong, but let’s just say I experienced a host of random gastrointestinal issues ranging from nausea and bloating to constipation and eventual diarrhea. The flavor was bland and the menu was extremely limited. There was no creativity to the dishes and the presentation was a bloody mess. Ambiance: Cramped and Musty Tables were literally so close together that we felt like the guests next to us were invading our privacy. The dining room smelled musty and surfaces felt grimy and sticky. It was pretty gross. And don’t ask about the bathroom. Not only had it not been cleaned recently, they were out of basic supplies including feminine napkins/tampons in the dispenser, air freshener, and toilet paper. Location: Hard to Find The location of endometriosis was extremely hard to find. We tried using GPS but ended up having to poke around a dark seedy neighborhood exploring every nook and cranny before we finally identified it. It also took much longer to get there than we expected based on what we had been told by the reservation staff. All in all, this was one of the worst ordeals I have ever endured. Nothing about it was pleasant or positive. Honestly, I’d rather have an organ removed from my body than ever have to revisit endometriosis. The scars of having undergone that trauma will stay with me for the rest of my life.

Community Voices

I feel really off this week. My words are jumbled up. I can't think straight. Every little thing sets me off. I can't be around loud groups of people, and all I want to do is isolate. But if I do that, I'll lose all my friends, but I don't want to burden them with how messed up I feel. I don't know if they'll understand if I tell them, or even care. I feel like even my energy is enough to keep them away, even though I try my best to not act so miserable. How does one "fake it until you make it"? #CheckInWithMe

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