Author: stonefly

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Why are we so scared of the word disabled?

There are so many euphamisms for disabled people. Just off the top of my head there is:

  • Differently-abled
  • Handi-capable
  • Special (needs)
  • Challenged
  • The r slur
  • Crippled*

Why do we have so many terms when it’s so much easier to say disabled?

Non-diabled people have always been uncomfortable with disability. This can stem from the historical treatment of disabled people. Disabled people were institutionalized, abanonded by their families, castrated, and lobotomized. They were seen as “less than” and a deviant to society. This created ableism as we know it.

Non-diabled people are fearful of diabled people, or feel uncomfortable around disabled people. They even struggle to address them. Such as speaking to the hearing person next to a Deaf person. Or speaking to a caregiver of a non speaking person, instead of directly to the disabled person.

Choosing to identify disabled people with euphamisms is a direct line to ableism and this fear of disability. They are so fearful of it they can’t even use the word disabled. For a long time person-first language was the preffered method of speaking to and about disabled people. However this was mainly pioneered by non-disabled people, like caregivers, doctors, and parents. Recently, identity-first language has been a way for disabled people to express their pride in being disabled. It takes away the negative conotations of the word and celebrates the identity of disabled people.

However, there are many older disabled people that grew up with the person-first language and prefer that to idenity-first language. It is best to ask the disabled person their preference before referring to them in any specific way.

*Note: More recently the term “crip” (from cripple) has been reclaimed by the disability community.

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For all my chronically ill baddies- you are disabled enough.

I have been chronically ill since I was 16. It started with POTS. Then came the classic Fibromyalgia. Chronic Lyme Disease. You name it. But I didn’t label myself as disabled back then. “Chronically ill” was the phrasing I used. Back then I didn’t know much about the disability community. I was just a sick teenager and young adult.

Then in 2020 I was diagnosed with an degenerative autoimmune disease- Ankylosing Spondilitis. I had to be put on immunosuppressant medication; the only thing that would stop the progression of my disease. It was scary to be immunocomprimised during the pandemic. I had to be really careful, and I basically couldn’t do anything or leave my house.

This is when I started learning about the disability community. I began to identify as disabled. I started educating myself about disability rights, and quickly became an advocate online. And of course some people decided this was too much for them. My (ex lol) best friend broke up with me (via text) spouting some nonsense about talking about my disability too much. She also claimed I was faking my autism (I had recently begun to self diagnose, and would later go on to recieve an official diagnosis) for attention. My own parents constantly questioned me about my referral of myself as disabled. It caused me so much pain and imposter syndrome.

Thankfully, I was able to work through this and come out on the other side, proud to call myself disabled. I am greatful for my friends and family that support me, help me, and care for me. They don’t dismiss me. I know I am disabled enough.

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The Tomboy to Enby Pipeline

I grew up in a houshold where gender norms were not enforced. I was allowed to wear “boy clothes” and play with “boy toys” just as much as “girly” things. For my 5th year I was obsessed with Spiderman and would wear a Spiderman costume around the house all the time (and try and climb the walls). I had my hair cut short and was constantly questioned about my gender as a young child. At first I would get annoyed by constantly getting asked “ArE yOu A bOy oR a GiRL?” because to me it was obvious that I was a girl. I didn’t understand that to everyone else girls are supposed to have long hair, and wear pink dresses. I didn’t understand why it wasn’t obvious I was a girl in my Pokemon shirt and short hair. Even at a young age I was questioning gender norms (probably due to being autistic lol). I first learned the word tomboy in early elementary school. This was a label that was pasted onto me, not chosen by me. I never understood it. Why couldn’t I be a girl and like playing in the dirt? Why did I need a seperate label from everyone else. This othering definitely coincided with my lonliness as an undignosed autistic child. I just felt so different from other girls. Most of my friends were boys because they liked to do the same things that I did. I struggled to relate to women well into my adulthood. It wasn’t until I realized I was nonbinary did I fully understand why I never felt “like other girls”. Sure people called me a pick me in high school and college. But I geniuinely wasn’t like other women, because I wasn’t a women!!!! It has taken me a long time to come to terms with my non-binary identity, and it’s something I’m still exploring. I only started using they/them pronouns only 2 years ago. I am excited to continue exploring my identity as I grow and change.

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Life After Diagnosis

Phenomenology is the study of first-person experiences and sensations that give life more meaning. When we were discussing this topic in class I immediately thought about how much my experience and perspective on my life shifted after my adult autism diagnosis. After the diagnosis I began to look back at my life and pick out moments and traits that, in hindsight made so much sense with me being autistic. But before the diagnosis, were just a confused, muddled mess. I remember thinking back on basically every interaction I had ever had and wondering if I would have reacted differently had I known. They say ignorance is bliss, but in all reality the not knowing led me to become a traumatized, jaded individual. The world isn’t built for autistic folk, and imagine going about your life wondering why you are facing barriers and roadblocks at every turn and not even knowing why. It messes with your sense of self and you begin to think something is deeply wrong with you. I am still having to unlearn that one. Yay for therapy!

Something that you do when you spend your whole life not knowing you’re autistic, is you get really good at masking. I was able to play the part semi-well and be sociable, friendly, and well-mannered. And when I got older I became even better. But when you learn that you are autistic, that mask begins to crack. It crumbles away and you are left with a messy, soupy, puddle of sensory issues, lack of social awareness, and fixations. It’s extremely common for adults who are diagnosed with autism to regress in a lot of their skills once they find out about their diagnosis. After holding themselves together by the seat of their pants their whole lives, their whole world is turned topsy turvy. This is what happened to me. It’s taken me years to reacclimate to my new way of perceiving the world, and myself. Slowly I’ve built myself back up and created a new, stronger identity. Diagnosis saved my life.