“If someone feels like labeling me as ‘disabled’ makes me less of a person in some way, that’s really saying a lot about them, isn’t it?” — Shayla Maas 
I love words. But the words English has on the subject of disability are insufficient and confusing.
For example, I myself would love to have a word for that exquisite swirl of joy and pain that comes from finding something that helps my son… only to grieve a moment later that it has taken me so long to find it.
Excitepain? Joycrash? I don’t know.
For now, it’s best described by a guttural sound that starts with eureka and ends in anguish.
But that particular dilemma aside, the words we have to talk about people who have brains or bodies that work differently than most people’s seem to be constantly evolving.
Once acceptable, “idiot,” “imbecile” and “moron” were replaced in the 20th century with what was thought at the time to be a gentler word: “retard.” That word is now considered offensive in all contexts, except, say, chemistry and bread making.
It is the same with “handicap,” which, depending on whom you ask, was adapted from the sports world to indicate a start further back from everyone else (negative connotation) or an additional burden placed on a person (this feels about right to me, but that’s probably my ingrained ableism talking). “Handicapped” is not acceptable to refer to a person, but referring to objects, like handicapped parking, is still OK. It’s better to use “accessible” though.
“Special” as in special needs or special education is widely used on kids today but ask disabled adults and most will take offense to the term. As many disabled activists tweeted at me last fall, their needs are not “special,” they are the same needs as all humans: education, housing, medical care, love, acceptance.
This leaves me in a quandary about what to do for “special needs mom” because there is no other widely accepted term for the sort of experience I want to talk about. But I want to be respectful, so I stopped using that term. Instead, I use “medical mama” or some variation, even though I doubt that term will be universally acceptable either. (If anyone has suggestions, please leave them in the comments.)
I will, however, continue to use “Special Needs World,” a phrase I invented for the overwhelming and othering systems that parents of disabled children have to navigate. (Disabled people have to navigate many of these systems, too, but at least the ones I heard from on Twitter vehemently do not want to use my term.) Special Needs World, to me, symbolizes the attitudes and approaches to me and my children that are different than they would be otherwise.
I describe Special Needs World in more detail here.
“Normal” (and therefore “abnormal”) has roots in statisticians’ attempts to create a standard, acceptable human. So… eugenics. That’s fun. I’ll avoid those in favor of “typical” and “neurotypical,” and sprinkle in “neurodiversity.”
Renown disability rights activist Judy Heumann would call me “nondisabled.” Others would say I’m “able-bodied.” I’ve also heard “temporarily able-bodied,” which is used to remind one that unless they drop dead one day, they, too, will be disabled sooner or later.
“People with disabilities” is still generally acceptable but there is a growing movement to do away with that phrase in favor of “disabled people.” (For what it’s worth, my 10-year-olds prefer person-first language, so maybe in their generation the pendulum will swing back?)
Interestingly, the word “disabled” has roots in some problematic 17th century laws in England that categorized people according to ability. The word fell out of favor for some time, but, for now, the majority seem to think of it as the most neutral and acceptable term for this population.
Much like “queer” in the LGBTQ+ community, disabled people have reclaimed the word “cripple.” However, many use the much-cooler-sounding “crip,” as in #CripTheVote and the Oscar-nominated Crip Camp. Since I am not a member of the in-group, I don’t feel comfortable using that term except to refer to the above.
All in all, I will defer to the stylebook developed by the National Center on Disability and Journalism. That comprehensive list is a godsend as even different diagnosis communities prefer different terms and word order. For example, blind people have long preferred identity-first language and in recent years so do most autistic people. People with mental illnesses and those with acquired disabilities often prefer person-first language: “a person with bipolar disorder” or “a person with hearing loss,” for example. Even within a disability group there can be differences of opinion. As the NCDJ guide notes: “Some people with ADHD prefer to say they ‘have’ the condition; others prefer to say they ‘are’ ADHD.”
As we evolve our language, I imagine there will continue to be a debate about person-first or disability-first language. I will use both, giving sentence flow, a specific subject’s preference and meaning primacy, instead of twisting readers in circles.
Hopefully this was helpful information. Maybe you even wish you’d known it long ago.
Fortunately, we can use our new word for that: Ahaaaargh.
UPDATE (8/27/21): For the “In Her Words” series, I will use terms that my subjects use verbatim. I think it’s important for a number of reasons to preserve the way that people actually speak.
P.S. I am publishing this newsletter as a labor of love. If I can help one family, it will be worth it. Those who are willing and able to buy me a coffee once a month, I’m very grateful. Or, if you have a — ahem — “medical mama” in your life, consider a gift subscription.
What I’m reading this week
A round-up of news for parents of disabled children.
Farrell has been open about his son's diagnosis, which is often misdiagnosed as autism or cerebral palsy.
“The struggles of a child with special needs can be so brutal that they can tear at the very fabric of your heart, but the love shared and the pure strength and heroism observed is the needle and thread that mends all tears,” he said in a 2017 interview with TODAY.
The extra psychological, physical and financial costs of having a disability – especially in a world that is not inclusive, not accessible, and even hostile to children with disabilities – can cause stress for families, increasing the probability of family break-ups and (typically) single motherhood.
Children with disabilities are also more likely to suffer from abuse. In Cambodia, for example, children with disabilities are 1.8 times more likely than non-disabled children to be neglected, 1.6 times more likely to be physically abused, and 2.2 times more likely to be sexually abused. They are also more likely to face stigma and shame, which is not directly identified by social indicators.
• From the Portland Tribune: 2 deaths in 100 days at Oregon youth correctional centers
The death of Brett J.J. Bruns by self-harm in December 2019 — as well as the unintentional overdose that took the life of Juan Lopez-Robles in March 2020 — casts a spotlight on the contractor facilities that are paid millions of dollars per year by the state to rehabilitate youth behavior.
Oregon Youth Authority now faces a combined $16 million in potential civil penalties as two separate wrongful death lawsuits wend their way through circuit courts.
"The system is built to be sick," said Judah Largent, a Corvallis juvenile delinquency attorney not involved in the litigation. "With the tragic deaths of these children, we are seeing the absolute worst of the sick system."
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