disability awareness days in April

Disability Awareness Days in April

Do you never want to miss a disability awareness day again? I’ve collected info on different April disability awareness days into a monthly list. Since definitions of disability vary, I’m choosing to be extra inclusive just in case.

Most lists just name the days. However, I want to do something more. In addition to the dates and ribbon colors, I’d like to talk about what matters to each community.

All of April is Autism Acceptance Month.

April 2: World Autism Acceptance Day

Colors: red, rainbow, or gold

Symbol: rainbow infinity sign (not puzzles)

Hashtags: #autismacceptance, #REDinstead, #neurodiversity, #LightItUpRed, #LightItUpGold

Special notes: Don’t use #autismspeaks, puzzle pieces, or the color blue because these are associated with negativity. If you aren’t autistic, then don’t use #ActuallyAutistic. It’s meant to give autistic people a space of their own.

There’s an autistic person in my family. Also, the Autistic community is highly active online. Thus, I can say a lot about the relevant issues.

Autism Acceptance and Awareness

When we say we’re a society that’s not merely aware, but that’s actually in acceptance of autism, then our behaviors will be recognized as characteristics of a person, not symptoms of a disorder.

Renee Salas

While some people call it “awareness” day, the “acceptance” campaign is different. Some autism-related groups tell deeply negative stories. However, autistic people want something different.

Autism AwarenessAutism Acceptance
bluered, rainbow, or gold
puzzle piecerainbow infinity sign
focuses on feelings of parents who feel victimized by their children’s autismfocuses on autistic people’s well-being, with loved ones coming second
tends to portray autistic people as burdens or victimstends to portray autistic people as human beings
aims to create sympathy for parents and make autistic people act “normal” and docileaims to increase inclusion, ensure human rights, and end the abuse of autistic people

Difference, Not Deficit

Autistic people are an important part of the world. Autism is a normal part of life, and makes us who we are.

Autistic Self-Advocacy Network
smiling autistic people fidgeting with words saying there's nothing wrong with being quirky
Quirks might be all you can see, but it’s more than that. (Instagram)

To many autistic people, an autism cure feels like an existential threat. Autism is mostly genetic. How do you get rid of something innate? Perhaps by getting rid of the people. When people talk about finding a cure for autism, many autistic people and loved ones worry this might mean selective abortion.

Many autistic people don’t want a cure. Instead, they want acceptance. While there’s nothing wrong with helpful therapy, they don’t want it to change who they are. Instead, they want to become happy and healthy autistic adults.

This underscores a core belief of many autistic people: they’re not broken. They’re wired differently. They aren’t bad at being human. Instead, they’re making their way in a world designed for a different type of human.

Other Issues

Sometimes you might see people called “high-functioning” or “low-functioning.” However, autistic people say this isn’t right. Autism isn’t a straight line from mild to severe. Instead, it’s a group of traits. For example, you can be nonspeaking and good at writing code. Also, you can be good at chatting but struggle to manage your house. It’s complex.

Autism is thought of as a white male thing. However, anyone can be autistic. Because of this stereotype, girls and people of color often go undiagnosed for longer. Also, it doesn’t help that diagnosis can be costly and take a long time. As a result, some people resort to self-diagnosis.

Thus, don’t assume that a self-diagnosed person is faking it. There’s a good chance they’re an autistic (or likewise neurodivergent) person who isn’t getting the help they need. When in doubt, be kind.

Summary

To support autistic people, you can:

  • De-stigmatize “odd” things like stimming, flinching at loud noises, and struggling with speech.
  • Refuse to judge people for being enthusiastic, shy, quirky, or standoffish.
  • Say “that word isn’t cool” when someone uses the r word.
  • Tell people to stop making cruel “dank memes,” “autistic screeching” jokes, and “when the autistic kid” jokes.

And if you miss April 2nd, don’t worry. Autism Acceptance Month is all month!

April 6: Bohring-Opitz Syndrome Awareness Day

Colors: denim and gold

This very rare genetic condition affects development. Traits include major intellectual disability, seizures, and different facial features. As babies, they have serious feeding problems. Other health problems are common too. Also, they tend to have cheerful, strong-willed personalities.

Unfortunately, this involves a shorter life expectancy. Some of them will die as babies or small children. Others reach teen or young adult years. Since it’s so rare, we don’t know the life expectancy yet.

Above all, families need support. For this day, try talking about ways to offer help for a family with a child with serious health problems.

April 7: World Health Day

This day isn’t always about disability, but I thought I’d include it anyway. Started in 1948, it highlights a different cause next year. For example, in 2020, it was about nurses and midwives.

In 2021, the topic is inequality. Lower-income people don’t always have access to healthcare and a healthy environment. This year, we highlight that issue.

April 11: Parkinson’s Disease International Awareness Day

Color: silver

Parkinson’s causes shaking, but that’s not all. Pain, sleeping trouble, slow movement, and rigidity are other signs. It’s a chronic condition, so you can have “good days” and “bad days.”

Parkinson’s is a slow but inevitable process. It’s hard living with it on a daily basis. The difficulty facing people with it is that they never quite know “Can I or can’t I do this today?”

Helen Mirren

Not only old people get Parkinson’s. Don’t tell someone that they don’t look like they have it. After all, it’s an invisible disease.

Also, keep in mind that you might not know when someone’s struggling. People with chronic conditions can act like they’re okay when they’re in pain. If someone says they aren’t up for something, or that they’re in pain, believe them.

April 13: Functional Neurological Disorder (FND) Awareness Day

Color: tangerine (yellowy orange)

Symptoms vary for this disease. Problems with motor skills, strange sensory feelings, seizures, and fainting are common. At times, parts of your body (like your legs or your ability to speak) just switch off. It’s unpredictable and stressful.

People with FND might not be able to work 40 hours a week. This doesn’t make them lazy. Instead, they’re fighting a battle that most of us never have to face. Don’t tell them you’re jealous for getting more rest. After all, it’s not a choice. It’s a symptom.

Sadly, doctors don’t know why this happens to people. When they see the test results, everything looks fine. However, that doesn’t mean people are faking it. Modern medicine doesn’t understand everything yet.

April 13 is a good day to say “I believe you.”

April 17: World Hemophilia Day

Color: red

Getting injured is scary enough, but when you have hemophilia, it’s much worse. A “small” injury could turn into a hospital trip.

I’d like to give you more details, but I got lightheaded trying to do research. Thus, I’m afraid I have to sit this one out! Searching “living with hemophilia” will help you find stories if you’re interested.

April 22-29: World Primary Immunodeficiency (PI) Week

Color: zebra stripes (for rare diseases)

The label “PI” applies to a group of diseases. People with PI are more vulnerable to disease. A “simple” flu can send them to the hospital for days or weeks. While it’s often thought of as a childhood disease, adults can have it too.

Americans with PI may not be able to afford treatment. Without it, infections can cause internal scarring, heart defects, blindness, deafness, and more. They could die. And it’s preventable.

Vaccines help people with PI. Community immunity helps protect them from diseases that could maim or kill them. If you get exposed to a disease, but you’re vaccinated against it, then you’re much less likely to pass it on. If you refuse to get vaccinated, then stay far away from people with PI. They deserve to be safe.

Also, keep in mind that staying alone is safer for them. Skipping events keeps them safer. However, it can also be lonely. If you know someone with PI, then make an effort to stay in touch. It could help them feel less alone.

If you want to help people with PI, then:

  • Get vaccinated if you can.
  • Donate blood and plasma if you can.
  • Advocate for affordable health insurance.
  • Reach out to them via phone, video chat, email, or letter.

April 23: Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day

Color: green

I’m a little more delicate than the rest of you, so I skip some activities that could be dangerous, like running or wild activities in gym. I like to say that I’m allergic to bumps.

Sienna, age 8

This genetic condition is scarier than its name. If you have FOP, then your muscles and connective tissue turn into bone. Over time, you lose your ability to move. It hurts, too. Injuries and bumps can cause flare-ups, which can cause more bone growth.

By age 20, many people with FOP need a wheelchair. The life expectancy is only 40 years.

Above all, people with FOP need a cure. Researchers are working on it. They need resources to find a way to fix it.

April 25: World Meningitis Day

Color: deep maroon (a dark purple-pink color)

Meningitis can steal a normal life. When it happens, you may not have much warning. People may die or spend a long time in the hospital. Afterwards, they may become deaf, blind, learning disabled, or otherwise disabled.

6 months later, my neck is still stiff /painful and I get 2-3 migraines a week… I also have extremely week neck muscles and arms. I am hopeful that [treatment] will help with some issues. Also grateful that I did not give up and keep searching for answers.

Elizabeth Roberts

Vaccines can help prevent this. If you get vaccinated, then you’re safer. And if an outbreak occurs, you’re less likely to spread it.

Which Disability Awareness Days Will You Celebrate This April?

There’s an autistic person in my family, so I’m definitely wearing #REDinstead for autism acceptance day. Still, I think I’d like to make time for other disability awareness days this April, too.

Being disabled is hard. Between symptoms, doctor appointments, and ableism, it’s easy to feel alone. These days are a way to let people know we care.

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