SOME TERMINOLOGY TO BEGIN WITH–
|I am a spoonie.||Spoon Theory was created by Christine Miserandino when trying to explain her experience with chronic illness (Lupus) to her best friend. Essentially: Imagine you have a supply of spoons to get you through the day. Actions cost you spoons. Most non-disabled folks expect to have an unlimited quantity of spoons. Most disabled folks do not have this luxury. Read more at the link below. Dowload Christine’s PDF on Spoon Theory here.|
|1)I am disabled / autistic / deaf /etc.
2)I am a person with disabilities.
|Many folks describe themselves with #1 because disability is intrinsic to their identity. Many folks see this as a method of reclamation of the word, “disabled” into a more neutral, descriptive word instead of a negative one. However, still others dislike this terminology because it does not separate the disability from the person. See POINT #2 for more.|
|I am differently-abled.||Several folks use this because it steps away from the implication that abilities are lacking or not present and instead are just different. However, many folks dislike this term as they consider it a euphemism – something indirect that can feel like skirting around the issues instead of just saying, “Disabled.” This is similar to folks shying away from saying the word “fat” instead of just using it to describe.|
|I am chronically ill.||Mostly describes people who experience sickness that will not go away. This includes Lyme disease, Lupus, chronic fatigue syndrome, many autoimmune diseases, etc. Chronically ill folks may self-identify as “spoonies.”|
A FEW THINGS TO RECOGNIZE–
① NOT ALL DISABILITIES ARE VISIBLE OR PHYSICAL
- You can always “tell” when someone is physically affected by disability.
- Being disabled is a “look” and all disabilities are visible.
- All disabled folks “look sick.”
- All disabilities must be physical to be “accepted” or acknowledged.
- Disabilities present in many different ways. Invisible disabilities exist, are valid, and merit help just like physical disabilities do.
- Do not abuse mental illness labels. Stop using words like “schizo” or “bipolar” or “OCD” as insults or ways to describe negative behavior unless you are truly discussing mental illness.
② DISABILITY IS NOT ALWAYS AN IDENTITY
Some folks feel that being disabled is inextricable to their identities. Some do not. Mirror the language they use for themselves, or ask if you are unsure.
③ FOLKS WITH DISABILITIES ARE NOT “FAKING IT”
④ FOLKS WITH DISABILITIES DON’T NEED YOUR PITY OR YOUR STARES
⑤ FOLKS WITH DISABILITIES EXPERICENCE INTERSECTIONALITY, TOO
⑥ THE ADA DID NOT ELIMINATE INSTITUTIONAL ABLEISM
The ADA – The Americans with Disabilities Act – was signed into law 30 years ago by George H. W. Bush. The ADA aimed to ensure equal access in public spaces and end discrimination in the workplace through the application of a broad set of (physical) accessibility standards, addressing of the concept of “reasonable accommodations,” and establishment of both accessibility and accommodation are civil rights.
However, many folks with disabilities still encounter structural and institutional ableism throughout the country. If someone with a disability tells you they have experienced ableism, don’t tell them they haven’t. Listen and be supportive instead.
Some articles on the ADA:
⑦ CURIOSITY ALONE IS NOT ALWAYS A SUFFICIENT REASON TO ASK SOMEONE A QUESTION
All emotions & feelings are valid; all actions are not! That is, you can absolutely FEEL curious but you also must be mindful of how you act with that curiosity and where you direct it. Curiosity is valid. Asking someone an invasive or invalidating question might not be, regardless of your intent. Use other resources to educate yourself.
⑧ OTHER MISCONCEPTIONS
- “We can’t have sex. We have no friends. We are less intelligent.”
- “Oh you’re so sweet and innocent.”
- Medical and health care professionals are always the saviors of folks with disabilities.
- Don’t assume what someone with disabilities can or cannot do. Remember that someone else’s sex life is none of your business and most certainly should NOT be your opening question.
- Disability does not equal personality.
- Believe folks with disabilities’ experience.