GLOSSARY, aka "Alphabet Soup"
Believe me, I know all the terminology can be tricky. It seems like things change every week, and it can be hard to keep up with. But no fear, because here we accept that change is hard and the world goes too fast. I'm sure I'll get things wrong from time to time. So let me provide the best explanations I can for the terminology and Alphabet Soup we use regarding disability.
Less Common Condition terrminilogy:
Legislation:
Other Miscellaneous Terms:
Preferred Terminology:
So, this section is a little different. I just wanted to talk about some of the more general ways we talk about disability, rather than being overly specific.
Less Common Condition terrminilogy:
- I/DD: Intellectual and developmental disability. These are things like Down's Syndrome and autism. They can affect cognitive processes (short term memory, abstract concepts, applying knowledge to new situations), social function (reading emotions, appropriate behavior, etc.), and practical functions (activities of daily life like managing money, using transportation, dressing and feeding oneself). On this blog, we support autism acceptance rather than awareness, we choose ASAN (Autistic Self-Advocacy Network) over AutismSpeaks, and we use the preferred language of the community: identity-first. Many people prefer to say they are "autistic" rather than "a person with autism" due to the fact that autism, by definition, colors the way autistic people perceive and interact with the world. It is an extension of themselves.
- PHPV: This is my rare eye condition. It stands for Persistent Hyperplasia of the Primary Vitreous. Basically, the artery that feeds the eye in the uterus doesn't dissolve like it should and instead creates a cataract. Most people have only one eye affected, and it's usually quite smaller than the other. I have a full post about the condition here.
- C-PTSD: Complex Post-Traumatic Stress Disorder, typically acquired from long-term trauma like child abuse/neglect. Again, there's a full post on the site which goes into more detail.
- d/Deaf and HoH: There are two different "kinds" of deaf. Lowercase-d "deaf" generally refers to "a person with some form of hearing impairment." Capital-D "Deaf" means "a Deaf person involved in the Deaf community." Deafness is somewhat of an identity, a linguistic difference, for some people. HoH refers to people who are "hard of hearing," meaning that they have a milder hearing impairment. Both groups tend to use ASL, American Sign Language. Here, we respect people's right to use whatever form of language suits them best, and acknowledge that Deafness is not considered a "bad thing" or a disability by some people in the Deaf community.
Legislation:
- ADA: Americans with Disabilities Act. First passed in 1991, this law built on previous special education and civil rights laws to officially lay down the ruling on disability rights. This document covers discrimination in school and employment, legality of service dogs and emotional support animals, and requirements of public accessibility, among other things. It's a pretty hefty law, which has been updated a few times to include a few changes, but this is the overall scope.
- IDEA: Individuals with Disabilities Education Act. Originally passed under a different name in 1975, the most well-known form is the updated 1997 version and the 2004 update. This law requires public schools to provide individualized education programs (IEPs) to students with disabilities which affect their learning. This includes screening and evaluating students when necessary, creating goals, and providing additional instruction or a different school setting to fit the student's needs. This also developed the idea of LRE: Least Restrictive Environment. LRE requires students to be as involved with the general population as possible, even if they can't be in the same classroom. This is a highly contentious issue that is still debated today; some people want to do away with fully self-contained classrooms because they're too restrictive, while others think fully included classrooms aren't practical or realistic, and would require hiring additional staff. That all is another post for another day!
- Section 504: Not quite an acronym, but it's a technical term. Section 504 is a part of the Rehabilitation Act of 1973, although I think it may have been absorbed into the ADA sometime in the 2000s. Essentially, Section 504 states that individuals with disabilities who are in publicly-funded schools and employment are entitled to accommodations to work/learn with their peers. Practically, I've only ever seen it applied in school settings. IDEA is what's used when the student's disability is affecting their ability to learn (their grades are dropping below grade level or they aren't progressing at an expected rate) and they need additional or different instruction. 504 plans are used when students just need accommodations to make school more doable, like large print handouts, extra time on tests, microphone systems for the Deaf/HoH, or permission to leave at any time to use the restroom. This can also be used for kids who have to miss a lot of school for doctor appointment or sick days; the rules regarding absence can be waived up to a certain point, and things like homebound tutoring may be provided.
Other Miscellaneous Terms:
- Accommodation/Modification/Differentiation: These are generally related to education, but they can apply in a lot of settings.
- Accommodations are the small changes individuals might need to work or learn. This can be a change in equipment (screen reader, alternate seating, larger print, big pencil grips, etc.), a change in environment (quiet workplace, small group testing, sensory-friendly room, etc.), or a change in policy and rules (extra bathroom breaks, extra absences, extended test time, working from home instead of the office, reading a test aloud, etc.). As long as the request is reasonable (i.e., doesn't involve remodeling the entire building or costing hundreds of thousands of dollars), it should be met.
- Modifications specifically apply to education, as far as I can tell. In special education, this would be something like requiring fewer homework problems from a student because it takes them much longer and they would demonstrate the same amount of understanding with 5 problems as they would 10. The parameters are changed for the student, but not necessarily the overall difficulty or content. In some cases, this might be providing tests that are at a lower reading level than everyone else's, or taking a different test for the statewide testing. Typically, modifications are only used for students who are significantly behind their grade-level peers and who are progressing much slower. This is why many secondary schools offer a non-diploma track or an alternate curriculum; some students just cannot reasonably get to grade level, but they still need to be educated to their full potential.
- Differentiation can sort of be a workplace thing as well as an education thing. Think about this: have you ever been partnered with the "smart kid" for a project? Or were you the smart kid and got paired with the "dumb kids?" That's differentiation. Differentiation is basically a way of allowing high-achieving people and less-achieving people to learn from each other, which is typically through peer tutoring in school. It can also refer to gifted kids being given extra challenges, or additional support being provided to the struggling kids. Teachers are supposed to write their lessons with the whole class in mind, including something for each of these groups so everyone has the chance to learn at their own pace. This is especially important in an inclusion classroom, where differentiation is the primary method for identifying students who need more help and who may need accommodations.
- Special Education: I realize this phrasing might be US-specific, and it's also kind of outdated. Unfortunately, we still use terms like "special" and "exceptional" to refer to students with disabilities in the US. Here, special education refers to the additional supports and alternate settings students might utilize in school. Some kids only need a little extra help keeping up, so they may be placed in a "resource" class for part of the day to help them get additional practice in the skills they need. Students who generally can't function in a general education class or who are so far behind that they wouldn't understand the lessons at all are typically in a form of "self-contained" classroom. These classes usually have their own curriculum and pacing, might have students of many ages and grade levels, and focus on teaching life skills as well as academic. I've joked many times that our self-contained students are better prepared to live independently than the gen ed students; at least our kids know how to do laundry, wash dishes, write checks, etc. (It also feels like a horrible double-standard that they're required to learn these skills when their peers aren't, but I digress.) Self-contained students may or may not interact with gen ed students at lunch and elective classes. The individual students, the teacher, and the school culture typically influence that decision.
- We also have a system in the US to help catch students who are starting to slip before they get too far off grade level. The old model (which many places in the US still use) is essentially the "wait-to-fail" model. Students aren't really given much support or attention outside of what their teacher can provide until they are basically failing. This tends to make diagnosis of learning disabilities much later than they should be, and can set a child up for failure later on. The current preferred model is "Response to Intervention" or RTI. In this system, kids are given support from the start. If they're struggling, interventions are made. If those don't work, they change things up. If they're still not working, the student might be evaluated for disabilities and given time in the resource class. So on and so forth until we get to no interventions working consistently and the student needs the highest level of support. Or they are found to not have a disability, in which case they cycle through trying other interventions at the lower levels of support. It's not perfect, not by a long shot, but at least they're catching kids much sooner and preventing them from falling too far behind.
Preferred Terminology:
So, this section is a little different. I just wanted to talk about some of the more general ways we talk about disability, rather than being overly specific.
- Disability isn't a bad word. Generally, people really don't like being referred to as things like "differently abled," "handi-capable," or anything like that. It's very patronizing and kind of takes away our agency of saying that we do function differently, we do have unique challenges, and those can't be ignored.
- "Handicapped" is super not okay. Personally, I can let it slide sometimes, especially in reference to accessible parking, but don't say it about a person. It's an outdated term that has a lot of negative connotations.
- I don't even want to write it, but I'm sure you know "the r word." This is one of the few words I will actively correct people on, and it is not allowed in my house at all. I'm not joking, if I have to correct a guest more than once or twice about using that word, I will kick them out. My husband has his own word he can't stand, and this is mine. Yes, it used to be the medical terminology. In fact, my parents were told I would be that way when I was born. But it is not acceptable now, and it has not been acceptable for many years. Never, ever use this word to refer to a person with disabilities--frankly, don't use it period!
- "Cripple" is not okay for other people to say, but some of us have been adopting it for our own uses. Kind of like how LGBT+ people have adopted "queer" as an okay thing for them to identify as and use. It usually only refers to people with mobility challenges (due to disabilities relating to pain, muscles, coordination, etc.) from what I understand. It's the only context I've seen it used.
- "Accessible" is the preferred way to say something is disability-friendly. Like, an "accessible toilet stall" or "accessible parking." It just sounds a lot more polite and accepting than "handicapped stall" or "disabled parking." Not a super nit-picky thing for me, but it means a lot to some people.
- Person-first language versus identity-first: This is a tricky subject. It really depends on the disability and the person. I have both congenital and acquired disabilities, and I find that I talk about each of them much differently, as I have noticed in other people as well. Acquired disabilities (as in, the ones that happen when you're old enough to understand what's going on, like car accidents or sudden illness) tend to lean towards person-first. I think this is because those people usually had a life and an identity before their disability. They want to be seen as the same person, just with some new challenges and a new way of life. I totally understand that, and I tend to feel that way towards my acquired illnesses. For people with congenital disabilities (who are born with it, though I'll also lump people who acquired their disability as an infant/toddler but weren't born with it), it tends to be a bit more tied up in their identity. This is especially the case with autism, as I mentioned earlier. So these people sometimes prefer identity-first (i.e., Deaf or autistic).
- There is another confounding factor here which I'd be remiss to leave out: politics. Ugh, I know, right? But hear me out--identity and politics can kind of go hand-in-hand. Part of the reason some of us prefer identity-first language is simply to remind the world that our identities exist. Person-first language allows a lot of people to push out the thought of disability and just imagine the person as if they didn't have it. But our disabilities are, in at least a small way, extremely influential in our lives. Taking that away is like erasing everything we deal with, all the challenges we've faced and overcome, and ignoring a huge part of our lives. I say this is political because of my general stance on disability rights: we have to be loud and visible for anyone to realize something needs fixing. By pretending we aren't disabled, pretending we don't have the challenges we do, allowing others to ignore that aspect of ourselves, we sometimes deny the chance to be loud and make our needs clear. But all that is a post for another day.
- "Wheelchair-bound" is a really common one I see a lot. This statement implies that the wheelchair itself is the problem, like it's trapping you. I just got my first custom wheelchair, and let me tell you, I have never felt more empowered! We much prefer the term "wheelchair user" instead. It's just a tool, albeit a tool that allows us to live our lives and be independently mobile.
- While we're at it, let me throw in "special needs." I heard this and "exceptional needs" all the time in my special education classes and around parents of disabled kids (yes, I tend to use identity-first, except in cases I know people prefer differently). But the thing that bothers me most about these terms is that it implies our needs are far above and beyond what is reasonable and expected, like we're a burden on society or it's just too much trouble to think about anyone else. It really irks me personally, but the community at large also finds it patronizing. I'd say Special Olympics gets a pass though, since they appear to be a pretty solid organization that actually does good work and doesn't just steal money (like AutismSpeaks).