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

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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Community Voices

How I Experience Autistic Joy

The new season of my favorite show just came out. As the main title appears, I’m so excited I’m bouncing, laughing, and widely flapping my hands. I’m so excited about the show that my family joins in on my celebration. My joy opens up a new experience for my neurotypical family. I feed even more off of their joy and I’m buzzing. The world is a vivid, loud, and intense place. As an autistic person, I experience stimuli in extreme ways. The over and under-stimulation is very real in an autistic experience that can bring meltdowns and shutdowns. However, there are magic moments when I experience intense sensations of extreme autistic joy. My autistic joy is one of my favorite things about being autistic. It can be intense as a meltdown, but filled with overwhelming happiness and excitement. When I experience joy, I feel the excited vibrations throughout my body. To release the energy, I do what I like to call “happy stim.” I will jump up and down, excitedly flap my hands, sometimes even dance. I don’t see neurotypical adults experience or express joy as I do. Many autistics have been made fun of and had to suppress their autistic joy. For many years professionals didn’t understand stimming. It was thought to be harmful and autistics were made to suppress their stims, whether the stims were happy or upset. Now with the help of the autistic community, stimming has become more accepted. However, many still don’t understand the difference between happy or distressed stimming. Stimming is important to my autistic joy. If I suppress the joyful stimming, the joy can turn into anxiety. My special interests are one of the ways that I experience autistic joy. My special interests have changed over the years, but my current ones are Star Wars, fantasy shows/books, and learning about disability and mental health. My special interests will often bring me this intense feeling of excitement. I can be so focused on reading backstories about my favorite characters in Star Wars or organizing my bookshelves that I will lose track of time. I can feel a happy buzz throughout my body for a whole day if I am thoroughly engrossed in my special interest. I take fangirling to the extreme. These interests have also helped me succeed in my everyday life. I’ve learned when it comes to work, I need to be in a profession that feeds into my autistic joy. I work as a freelance writer as well as a paraeducator for high school students with learning disabilities. I love that I’m able to learn and help teenagers who are neurodivergent with their school work. I’m able to impart some of my knowledge to young students who might not have someone who listens or talks to them. I also help teachers understand some of their toughest students that they have given up on. My special interests aren’t the only thing that I’ve found that gives me energetic vibrations in my body. Eating my favorite food, playing with my favorite stim toys, and touching something that is very soft can all give me a spark of joy. I’ve been known to do a happy dance while eating a good steak dinner and stim dance for hours just to feel the movement. The way I feel joy is an integral part of my autistic experience. It’s a beautiful part of being autistic and should be celebrated.

Having Support at Medical Appointments Is Your Right Under the ADA

It’s 2021 and my yearly echocardiogram and stress test appointment for my heart is coming up. The nurses call me and tell me what to expect at the appointment. When they tell me I can’t bring anyone in with me during any of my appointments, I freeze. I explain that I need a family member in the appointment with me. They tell me that it’s the rule and they will not allow anyone with me. After the call, I start to have a panic attack. As an autistic adult with medical PTSD and OCD, I need someone with me at appointments. I have trouble communicating and understanding everything that is going on during doctor appointments and tests. So I’ve always had a family advocate with me to help me during appointments. My family member often will help communicate to doctors what is going on with my health. When it comes to tests, it can be hard as I get very anxious due to my autism and previous medical trauma. Many doctors and technicians don’t always empathize or understand why I freeze up, which can cause frustration on both sides. Due to my disability, I’ve spent my whole life in and out of the hospital, seeing doctors, and having tests done. Medical trauma has made me extremely anxious during tests. I’ve had instances where the technician didn’t know my particular heart condition and had trouble doing the echo because of it. One of the times I was in the hospital, my family had left just for a bit and a tech came in to do my echo and proceeded to push really hard on my chest to the point where I had a couple of bruises. During these times, I tend to shut down. It’s like the voice I use to advocate for so many people becomes silent, stuck in my throat, and I lose the ability to talk. I’ve had doctors gaslight me and tell me that everything is fine when I was dying. My family provides clear communication and can explain my medical past as well as share the concerns I have talked about. They are the second set of eyes and ears and can remember more about appointments and keep notes when the doctor is talking too fast for me. That night I get on a video call with my therapist, telling her about my cardiologist appointment and how they are saying I have to be by myself. I explain to her that I can’t go to my appointments without someone with me. She nods her head in agreement and we form a plan. She suggests that she writes a letter explaining that I need to have a family advocate with me during appointments and tests. In the letter, my therapist explains my diagnoses and how they affect me in medical situations. Her letter states that per the Americans With Disabilities Act, I need an advocate with me during medical exams and tests to help me. The next day, I called my doctors and informed them that I had a letter from my therapist explaining my need for a family member to be with me at the appointment. They suggested that I make sure I had the letter with me when I got to the appointment and they would then put it in my file. Although most doctor appointments and hospitals are allowing people to have a guest or someone with them now, I still run into appointments where they tell me I can’t have someone with me. My most recent was a pelvic ultrasound for my endometriosis. My mum was with me at the time and showed the technicians my letter. Once they finally let my mum come back with me, she asked why she wasn’t allowed with me. They told her that it was to prevent a patient and their person from saying that the doctor did anything inappropriate — that is why they have the technician and a nurse present. My mum told them that seemed wrong as then they have two people against the patient so it’s the patient’s word against two people? These are the instances when it’s so important to have someone with me. Having the letter has profoundly helped me out. Doctors take their time explaining a bit more and they recognize my family members as a part of my team.

Having Support at Medical Appointments Is Your Right Under the ADA

It’s 2021 and my yearly echocardiogram and stress test appointment for my heart is coming up. The nurses call me and tell me what to expect at the appointment. When they tell me I can’t bring anyone in with me during any of my appointments, I freeze. I explain that I need a family member in the appointment with me. They tell me that it’s the rule and they will not allow anyone with me. After the call, I start to have a panic attack. As an autistic adult with medical PTSD and OCD, I need someone with me at appointments. I have trouble communicating and understanding everything that is going on during doctor appointments and tests. So I’ve always had a family advocate with me to help me during appointments. My family member often will help communicate to doctors what is going on with my health. When it comes to tests, it can be hard as I get very anxious due to my autism and previous medical trauma. Many doctors and technicians don’t always empathize or understand why I freeze up, which can cause frustration on both sides. Due to my disability, I’ve spent my whole life in and out of the hospital, seeing doctors, and having tests done. Medical trauma has made me extremely anxious during tests. I’ve had instances where the technician didn’t know my particular heart condition and had trouble doing the echo because of it. One of the times I was in the hospital, my family had left just for a bit and a tech came in to do my echo and proceeded to push really hard on my chest to the point where I had a couple of bruises. During these times, I tend to shut down. It’s like the voice I use to advocate for so many people becomes silent, stuck in my throat, and I lose the ability to talk. I’ve had doctors gaslight me and tell me that everything is fine when I was dying. My family provides clear communication and can explain my medical past as well as share the concerns I have talked about. They are the second set of eyes and ears and can remember more about appointments and keep notes when the doctor is talking too fast for me. That night I get on a video call with my therapist, telling her about my cardiologist appointment and how they are saying I have to be by myself. I explain to her that I can’t go to my appointments without someone with me. She nods her head in agreement and we form a plan. She suggests that she writes a letter explaining that I need to have a family advocate with me during appointments and tests. In the letter, my therapist explains my diagnoses and how they affect me in medical situations. Her letter states that per the Americans With Disabilities Act, I need an advocate with me during medical exams and tests to help me. The next day, I called my doctors and informed them that I had a letter from my therapist explaining my need for a family member to be with me at the appointment. They suggested that I make sure I had the letter with me when I got to the appointment and they would then put it in my file. Although most doctor appointments and hospitals are allowing people to have a guest or someone with them now, I still run into appointments where they tell me I can’t have someone with me. My most recent was a pelvic ultrasound for my endometriosis. My mum was with me at the time and showed the technicians my letter. Once they finally let my mum come back with me, she asked why she wasn’t allowed with me. They told her that it was to prevent a patient and their person from saying that the doctor did anything inappropriate — that is why they have the technician and a nurse present. My mum told them that seemed wrong as then they have two people against the patient so it’s the patient’s word against two people? These are the instances when it’s so important to have someone with me. Having the letter has profoundly helped me out. Doctors take their time explaining a bit more and they recognize my family members as a part of my team.

6 Reasons Not to Feel Guilty About Using a Disability Parking Placard

There are a lot of stigmas that surround using a disability parking placard. When this discussion of the disability parking placard is brought up, I always hear the same thing, “They just give out disability placards to anyone these days.” It gets my blood boiling. There are many reasons you can need to use disability parking spaces, such as a physical disability, developmental disability, or mental illness. Many people with invisible illnesses have disability placards. Two of the main themes I’ve encountered when discussing the use of disability parking placards are guilt and comparison. They feel bad about using their disabled placard. Many who have invisible illnesses feel as if they will be judged, especially if they don’t leave the parking spot open for someone they believe might need it more. We need to move away from the comparison narrative when it comes to using a disability placard and empower those who advocate for themselves. To most, a disability placard can be life-changing. It can mean that more places are accessible. There is less worry about not being able to make it back to the car after an errand. We need to empower ourselves to use our disability placards without guilt or comparison. Here are six reasons to not feel guilty about using a disability parking placard. 1. Walking out of your car/Not being in a wheelchair. Many people assume that if you are using a disabled parking pass, it must mean you should be in a wheelchair or use some type of mobility device. But not all disabilities are visible. It is OK if you can walk to your car and have the mobility to walk in and out of the place you are going. Disabilities affect each person differently. 2. Having an invisible illness. Much like not having a mobility device, it’s okay if you don’t “look disabled.” You don’t deserve the judgment nor should you be ashamed of using your placard just because you don’t fit society’s narrative of disability. 3. Using your disability parking placard at a busy place. It’s OK to use your placard if the place is busy. While it can be courteous to not take a disabled spot during busy hours, you could be harming yourself in the long run. In fact, during those busy times, you might need it more. Busy places can take up a lot of energy and can cause stress on our bodies. 4. Looking “too young.” I’ve had my disability placard since I was 19. I can’t tell you how many times I’ve gotten called out for using my placard just because I was young. Society assumes that the only people who should have a disability placard are the elderly and those with mobility devices. But, disability has no minimum age. 5. Parking in a disability parking space when someone else might need it more. Have you ever felt guilty or been told that you should’ve given your spot to someone who needed it more? Comparison can be very harmful. There will always be someone who has it worse, however, you know your limits and it’s important that you take care of yourself. There is a reason why a doctor signed off on giving you a disability parking placard. If you have your placard, use it. 6. Using your disability parking placard when you are having a good day. For most disabilities, especially invisible/chronic ones, a good day can easily turn around into a painful day. It’s OK to use your placard. You never know if your good day could end up being too much for you physically and then it becomes too much to get back to your car.

Community Voices

Celebrating my recording studio project #Depression

<p>Celebrating my recording studio project <a class="tm-topic-link mighty-topic" title="Depression" href="/topic/depression/" data-id="5b23ce7600553f33fe991123" data-name="Depression" aria-label="hashtag Depression">#Depression</a> </p>
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