Trigger Warning: Reference to the R-Word
It is April. That means social media is awash with articles, blogs, and fundraising events about Autism Awareness/Acceptance Month. This period of time can be very triggering for some. I am no exception. I use to participate more during this month of “awareness” inundation, but it got too much for me. The doom and gloom messages, the increased infighting amongst the Autism Community between non-autistic parents and advocates and self-advocates, the constant battle of trying to provide a more positive message and also insisting on the message of “Nothing About Us Without Us”, which many so-called “awareness” campaigns seem to forget. Even with this, I feel I must participate in some way, have my voice heard in some manner. I feel it is important to do this even if I am only one small voice amongst thousands.
The issue of labels comes up a lot. I mean so much so that about 276,000,000 results pop up when you Google the phrase “labels on people”. About 13,000,000 results pop up when you Google the phrase “labels on people with disabilities”. This blog is going to be a little different from my usual, so let’s talk about labels.
Labels – some people want them, others do not, and that is okay. Some people feel labels are necessary to open doors and provide pathways that weren’t available before. Others feel labels reduce the person to only their disability and open doors to stigma, bullying, and ostracizing. The ongoing battle between identity-first language and person-first language continues, what shall people use? To tell you the truth, you are never going to please everyone.
The best advice I can give you, advice I have seen many times on various pro-neurodiversity sites, has been put into a short, yet powerful explanation by the Association of University Centers on Disabilities (AUCD):
Words have power. Negative language leads to harmful action, discrimination, abuse, negative stereotypes, disenfranchisement, and violence; this is true along racial, gender, sexual orientation, and disability lines, and more. “Retard” and “retarded” are derogatory and dehumanizing terms — on par with the N-word used to describe African Americans, and various hateful terms used to describe members of the Jewish, gay and lesbian, and other minority communities. In addition, words and labels can cause others to think that people with intellectual and developmental disabilities are not able to achieve the things that others can achieve.
The advocacy movement led by people with intellectual and developmental disabilities (“self-advocacy”) continues to work to eliminate the use of the term ‘mental retardation’ or derivative terminology due to its harmful impact on their lives. Efforts such as End the Word have been increasingly successful in removing the word both from medical and common language.
People with disabilities do not want to be referred to as a victim or object of pity. People with disabilities are not victims. Disability is just one aspect of the person. Avoid using “suffers from,” “afflicted with,” “bound,” “confined,” “sentenced to,” “prisoner,” “victim,” or any other term that implies tragedy. For example, instead of writing “wheelchair-bound” or “confined to a wheelchair” use “person who uses a wheelchair.” Instead of “victim of quadriplegia,” use “person with quadriplegia” or “people with paraplegia.”
Disability is a natural part of the human experience, an aspect of human diversity like other areas of human variation, and most people do not like to be labeled. Therefore it is preferable to use people-first language. People-first language places the emphasis on the person instead of on the disability when discussing most intellectual and developmental disabilities. For example, instead of saying “Down syndrome person,” it is preferable to say, “person with Down syndrome.”
Some disability self-advocates prefer identity-first language. Identity-first language emphasizes that the disability plays a role in who the person is, and reinforces disability as a positive cultural identifier. Identity-first language is generally preferred by self-advocates in the autistic, deaf, and blind communities. It is important to note that whether a person with a disability prefers people-first or identity-first language is not universal.
If you are unsure as to whether you should use people-first or identity-first language in order to be respectful, the best thing to do is to ask people themselves.
A label is a personal choice. Pushing your preferred way on to others and insisting that your way is the only way and everyone should abide by it is not polite or respectful behavior. This applies to not only disabilities, but also gender, sexual orientation, and religion, as well as cultural aspects such as holiday celebrations, cooking, hair styles, clothing and music choices, ways of speaking, and mannerisms. There is more than one way to do things.
I have encountered people who object to the label of “Aspie”, so why do I use it? Why do I call myself “The Aspie Teacher”? It is NOT out of any thought that I am somehow more superior to others on the Autism Spectrum as some have suggested. I am simply my own hue on a very large neurodivergent color pallet that Autism is part of. I even wrote a blog about my personal perspective about this color pallet – Spectrum of Functioning – What does it all mean? – A Personal Viewpoint.
I call myself Autistic with a pride capital A. I am Autistic. Both my children are Autistic. I was diagnosed prior to the DSM-V being released at the age of 36. Finally having a diagnosis after a lifetime of feeling broken was a life changer for me. I discovered I wasn’t broken after all. I discovered I could learn better coping skills than what I had developed on my own just to survive in a world I couldn’t understand. That journey started almost five years ago. Asperger Syndrome was still a diagnostic term at that time. My evaluation states this term as my diagnosis. If I could afford to be re-evaluated under the new DSM-V guidelines, I would most likely be diagnosed with Autism Level I, because I do not have accompanying language impairment.
Why the Aspie label? That was the label that I felt comfortable with at the time I was diagnosed. My own husband and children called me “The Aspie Teacher”. It was a family choice label. When I started this blog, I asked my children how they felt about me changing my Aspie Teacher label to fit the new diagnostic criteria. They didn’t want me to. I am “The Aspie Teacher” to them. Even though I want to be respectful to everyone regarding labels, “The Aspie Teacher” is my personal label and it is family-based in origin.
Another one of my labels is “Geeky Science Mom”. I run a Tumblr blog under that label. It was my first blog and I created it after a lot of encouragement from an advocate and social justice warrior-type person whom saw something in me, a potential that hadn’t been tapped yet. She helped me find my “voice”, which just happens to be in written form. Even though I was not diagnosed with language impairment, I do have a speaking impairment. My mouth parts don’t always want to cooperate with me. I suppose you can say I have apraxia of speech.
To me, labels form a sense of community and a stronger sense of self. That first “Aspie” label, and eventually the “Autistic” label as I learned more about Autism, gave me a sense of community that I never had before. I discovered that there were other people out there like me. I discovered that I could be my authentic self and not have to keep trying to fit in a box that other people had designed for me, a box I could never fit in no matter how hard I tried. I discovered that I could be my true self and created my own path.
Not only am I Autistic, I am also a woman, a mother, a parent, a daughter, a sister, a sister-in-law, a teacher, an educator, a creator, a writer, an artist, a curriculum developer, a knowledge junkie, a spouse, a wife, a partner, a caregiver, a friend, a pet owner, a runner, a cat person, a rock person, a disabled person, a science geek, a nerd, a nerdfighter (I strive to increase the awesome in the world), and a lover of many things, too many things to list.
If you want to address specific areas, such as gender, sexual orientation, and religion, than I would have to say that I am a hetero-demisexual demigirl. The demigirl label means I am cis-gender most of the time, but fluctuate to agender periodically, specifically when under a lot of stress. That fluctuation can be very frustrating and uncomfortable for me when it happens and I can’t control it. I am also not religious, but rather spiritual. I would say I am a child of nature who honors the Great Mother (Earth).
What does this all even mean? Let’s just say you got a very quick glimpse into who I am as a person thanks to labels, labels I gave myself. The entirety of who I am as a person is much larger, of course, but labels can help in forming a picture when time is short and words are hard to find.
I ask that you honor those who have shared their preferred labels with you and I also ask you to respect places (online and IRL) that are designated safe for specific labels. People chose labels for specific reasons or they derive a label from specific diagnosis that they personally have. That label is a reflection of who they are as a person, it is an identity. If you have a problem with a label a person has chosen for themselves, take the time to learn who that person is and find out the reasons behind the chosen label. People are a whole lot bigger on the inside. Your initial reaction to that chosen label might just change for the better.
To quote Doctor Who:
Idris: Are all people like this?
The Doctor: Like what?
Idris: So much bigger on the inside.