People-First Language: What is It and How Should We Implement It?

While writing the prospectus for my recent Master’s thesis, was the first time I learned of people-first language. How could I be writing a thesis on disabilities and not have known about this? How is it that I was so clueless on the topic? I had been using phrases like, “the disabled characters” or “because the character is autistic.” I was politely informed by one of my committee members that I would have to go back and rephrase the way I addressed the characters I was writing about using person-first language.

People-first languages’ premise is simple: put the person before the disability, however, it is not only addressing the person first, it’s about using more polite phrasing that dispels negative stereotypes and not using a person’s disability to define their character. This is not to say we should pretend a person doesn’t have a disability, but it is a form of respect to the individual where they are not introduced based on their disabilities but by who they are despite their disabilities.

So what is the difference between person-first language and not person-first language? Here are some examples:

Person-First Language Not Person-First Language
The person with a disability The disabled person
Johnny has a physical disabilityJohnny is crippled
She uses a wheelchairShe is wheelchair bound

It’s a little more politically correct and may seem a roundabout way to introduce, or talk about those with disabilities, but it is a simple change we can all make. Maybe this isn’t a big deal to you. “So what?” you think, “Who cares?” Well, maybe you don’t care, but perhaps the people you are talking to or about do. Person-first language also reinforces certain etiquette that we all should abide by. Just as we would not use racial slurs to describe a person of color, we shouldn’t use outdated phrases like retard, crippled, or handicapped to refer to a person with a disability. According to the Texas Council for Developmental Disabilities, people are not handicapped, rather the word handicap should be used to refer to barriers created by people or the environment.

So, instead of saying something like:

The person in the wheelchair is handicapped.

You could say:

The person who uses a wheelchair is handicapped by stairs.

See the difference? The word handicap refers to the stairs not to the person.

Archaic language like this along with phrases like “suffers from,” “is a victim of,” and “is afflicted with,” evoke pity and make the disability out to be viewed as a problem. Disability is not a problem and it is quite ordinary to those who have them. People are much more than their diagnoses. Would you want to be defined by your medical history? Probably not. A person’s disability does not determine their potential and it’s time we change our perspectives and stop focusing on the limitations that people with disabilities may encounter.

Instead of saying something like, “Johnny can’t walk,” we can instead say, “Johnny uses a wheelchair.” Or instead of saying, “Sally doesn’t speak,” we can say, “Sally communicates using sign language.” See how one focuses on what can’t be done and how the other focuses on what can be done? Simple changes can make a huge difference.

This post is not to fault anyone who doesn’t use people-first language or shame them. You can’t know what you don’t know. All we can do is put in more effort once we have been made aware. I too have had to take a hard look at my own use or lack thereof of person-first language. Proper etiquette tells us not to use “cutesy” phrases which I am guilty of. I occasionally refer to my brother as a “downsie” and I changed the name of my blog from Differently Abled to Sense and Disability for this sole reason (although I think Sense and Disability is a way more fun name). So, I am definitely not the person to judge the way others choose to speak. All I can do now is learn from my past mistakes and move forward and perhaps whoever reads this can learn from my mistakes as well.

Perhaps next time you, me, or any of us encounter a person with a disability, we will be a little more aware of how we address and speak to them and about them. Given the circumstances of the world today, we can all afford to be a little kinder towards others, especially those who are a little different from us.

Citations

“People-First Language.” Employer Assistance and Resource Network on Disability Inclusion, askearn.org/topics/retention-advancement/disability-etiquette/people-first-language/.

“People First Language.” Texas Council for Developmental Disabilities, 15 May 2019, tcdd.texas.gov/resources/people-first-language/.

Person-First-Language-Article_Kathie_Snow.Pdf.

Eugenics: Is it Ethical?

Take a look at these photos:

What do you see when you look at these photos? The first and perhaps the most obvious is that all of the people in these photos have down syndrome, but what else? I see a proud boy giving a thumbs up, a laughing little girl, and a goofy couple having fun together. You probably see the same emotions and actions that I do.

The people in these photos are somebody’s children, siblings, friends, cousins, students, coworkers. They are silly, fun, happy but experience anger, pain, and sadness too, just like we all do. The only difference is the fact that these people have Down syndrome.

“Okay, so what?,” you may be asking yourself. “I know what Down syndrome is, who cares?” Well, I care, and you should too. Here’s why:

Have you heard of Nuchal Translucency or NT? NT is a type of prenatal screening done during the first trimester that tests for a range of genetic disorders like Down syndrome, other chromosomal abnormalities, heart defects, and skeletal dysplasia (Gottfreðsdóttir and Björnsdóttir).

“Okay, great,” you may be thinking, “These prenatal tests are good.” I would not disagree. Making sure you have a healthy baby is important and I’d like to assume most women would feel better knowing whether or not their babies are at a higher risk for developing certain disorders or conditions.

Particularly in Scandinavian countries, most notably, Iceland, this type of testing allow mothers to decide if they want to continue with their pregnancy or abort. I do not want to delve into the ethics of abortion as a whole, rather I want to challenge the ethics of aborting a child with a disability simply because of these screenings and what they imply for expecting parents.

Before getting deep into discussing these screenings, it is important to understand what eugenics is as a concept. Wikipedia defines eugenics as “a set of beliefs and practices that aim to improve the genetic quality of a human population, historically by excluding people and groups judged to be inferior and promoting those judged to be superior.” Say what you want about Wikipedia, but this definition is spot on. One example history has shown us of eugenics is Hitler and the Nazi regime, aka, the genocide of Jewish people. We all know the story. Hitler believed the Aryan race to be superior and anyone who was not of the Aryan race, such as the Jews (although not just the Jews) were killed. History has proven this many times over with different types of minorities (racial, sexual, etc…) but that is a different blog post for a different day. I’m not trying to compare racial discrimination with disabilities, but hopefully my example makes sense within this context. What I am saying is that Hitler is one of the worst examples we can think of when we think of eugenics as it turned to genocide.

With that, my argument (and many other peoples’ arguments) are that these types of prenatal screenings are aiding in the practice of eugenics. According to an article by CBS News ,”Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.” That is a staggering statistic. But to be fair, another article by Icelandic Magazine, in response to CBS, claims that this number is misleading and that about 85% of women in Iceland opt for the screening and about 15-20% of women choose not to have the NT screening. The article also claims that of the women whose tests show a likelihood of their children being born with Down syndrome, about 15-20% choose to carry the pregnancy to term. But I wish the article would have cited the total percentage of women birthing children with Downs, not just the 15-20% of women who decide to carry the pregnancy to term. The article seemed a bit defensive in its response to CBS and they make their numbers look larger than they are, as 15-20% seems like less women are aborting, however, the total number of women testing positive for babies with Downs cannot be big. And this number doesn’t account for the women who have babies with downs who do not opt for the NT screening.

However, it is also important to note that the screening will not always be accurate and someone who shows no signs of having a baby with Downs may still have a baby with Downs and vice versa. It is also important to understand the cultural differences of Icelanders. The article makes clear that no religious ideology, political ideology, community, or its leaders have any say in the moral obligations of family planning. Also, Iceland has a much smaller population than the U.S. – about 364,000 as compared to about 328 million in the States. It’s only natural that the number of abortions in Iceland seem huge.

So perhaps Iceland isn’t actually practicing eugenics. However, a study conducted in 2005 reported that in Iceland in 2004 all fetuses diagnosed with Downs were aborted (Gottfreðsdóttir and Björnsdóttir). Of course the numbers have varied from 2004 to now but the fact remains that over the past 10 or so years, only 2-3 babies are born with Down syndrome on average each year in Iceland. That is not very many. And while some people may think this is a good thing, I do not.

The 2005 study prompted one woman to say of herself being a mother to a child with Downs,

“I did not have to face these choices. This situation was
not yet possible when I had my child. My perspective
reflects my experience. But what impression does it
give people if all fetuses diagnosed with Down’s syndrome are aborted? For us, the parents of these children, it raises the question … is society departing from
the basic principle of diagnosing defects which are so
serious that it is not worth living with them?” (Kastljo´s,
August 11, 2005)

So does the test itself imply that disabilities in and of themselves are a burden to society? That a typical child is to be more loved, valued, and wanted? I, like this woman, would say, yes.

Regardless of what we each think about abortion, can we justify aborting a baby for a disability that is not typically desirable? Is to be born with Down syndrome bad? Does having Downs lessen a person’s quality of life? Does the same apply for being born with a heart defect or some other type of genetic disorder? Is the eradication of a disability, any disability, bad or good? Are we helping the population or hurting it?

I, of course, am biased. Some of you know I have a twin brother with Down syndrome, also this entire blog is about advocating for disabilities. So, of course I’d say it’s wrong to abort a baby with Downs. I’m too close to it. Of course others have different opinions and for those people I challenge you. If we look back at the Nazis, I think everyone would agree that the attempt at eradicating Jews was horrible. Why do we justify it when it comes to disabilities? I can assure you people with disabilities are not any less valuable or have lives any less fulfilling than the rest of us. Their lives may be different and fulfilling in ways that we do not think of. We think of success as having a stable job, with a healthy family, but there are variables. Success looks different for everyone. For my brother a fulfilling life is doing a jigsaw puzzle, watching The Walking Dead, irritating our father, and giving 50 hugs a day to our mother and that sounds pretty good to me.

There are times of course where I wonder what his life would have been like had he been born typical like me, and sometimes wish he could have the typical young adult experiences, but at the end of the day, I , nor my family, would have him any other way and I truly wish other people would feel that way about people with disabilities.

Citations:

“Facts about Down’s Syndrome and Pre-Natal Screening in Iceland.” Go to Frontpage, 26 Mar. 2018, http://www.government.is/diplomatic-missions/embassy-article/2018/03/26/Facts-about-Downs-syndrome-and-pre-natal-screening-in-Iceland/.

Gottfreðsdóttir, Helga and Kristín Björnsdóttir. “‘Have You Had the Test?’ A Discourse Analysis of Media Presentation of Prenatal Screening in Iceland.” Scandinavian Journal of Caring Sciences, vol. 24, no. 2, 2010, pp. 414–421., doi:10.1111/j.1471-6712.2009.00727.x.

Quinones, Julian and Arijeta Lajka. “‘What Kind of Society Do You Want to Live in?”: Inside the Country Where Down Syndrome Is Disappearing.” CBS News, CBS Interactive, 14 Aug. 2017, http://www.cbsnews.com/news/down-syndrome-iceland/.

McMahon, Sara, et al. “Fact Check: No, Iceland Is NOT Systematically Eradicating Down Syndrome.” Icelandmag, icelandmag.is/article/fact-check-no-iceland-not-systematically-eradicating-down-syndrome.

The Importance of Being Earnest: Myka and James Stauffer

Recently a popular YouTuber named Myka Stauffer and her husband, James, have come under fire for placing their adopted son, Huxley, in a new home. The couple adopted Huxley from China in 2017 and were informed that Huxley had some form of brain damage due to brain tumors. Myka later recounts that this “brain damage” was much more severe than they were led to believe and that Huxley had a stroke while in utero, autism, and a sensory processing disorder and that as much as they tries, they were ill equipped to handle all of Huxley’s needs, leading to their “rehoming” of Huxley.

This is simply the Cliff’s notes version of this story as I don’t want to focus on all the adoption details and the speculation about if they were given the proper medical diagnoses by the adoption agency. Rather, I’d like to focus on the actual “rehoming” and the question of morals that went into the Stauffers’ decision. The problem that the public has with the Stauffers is that they monetized their adoption of Huxley on their YouTube channel and that Myka acted as a special needs adoption advocate and also said in a now deleted video that her “child is not returnable” and that Huxley’s diagnoses “went in one ear and out the other.” This begs the question on whether or not the family truly considered the severity of Huxley’s disabilities even after being told by a third party medical professional that his disabilities were severe, which Myka also mentioned in this now deleted video. What’s more is that the family essentially made money off of this adoption and used the adoption of Huxley to get views and advertisement revenue.

Was their adoption of Huxley sincere? Would they have given up one of their biological children had they been born with the same disabilities as Huxley? I believe that their original intent to adopt was sincere and that they truly thought they would be able to handle Huxley’s disabilities. I believe they were disillusioned that they could not “fix” Huxley and that his disabilities were not “easy” to handle amongst their four other biological children. However, the Stauffer family has the means and access to plenty of resources and regardless of their knowledge of what they were told by the adoption agency regarding Huxley’s disabilities, they should have given more thought to what they would be getting themselves into by adopting a special needs child. I also think they should not have monetized their adoption of Huxley seeing as they ended up giving him up, proving their child is apparently “returnable.” Perhaps they should not be using their children for views at all, adopted or not.

Essentially, I think if someone is planning on adopting a child, especially one with special needs, then they need to research and plan for that child and prepare for what kind of care the child will need. This may seem obvious but given Myka’s “in one ear and out the other” comment, makes me think perhaps they weren’t as prepared as they thought they were. Children are a huge responsibility, and children with disabilities even more so. Huxley was already separated from his birth family and now his adopted family. Hopefully this new family will treat Huxley as their own and not see his disabilities as burdens for their lifestyle.

I don’t want to be too harsh on the Stauffer’s as I’m sure giving up Huxley was a difficult decision and that their biological children are saddened and confused. The backlash they have received, I’m sure, is also hard for them to deal with. Adopting a child, especially one with special needs, is not a moment to prove how good of a person you are, or how nonjudgmental, or how accepting. It should be because you genuinely care for the child and want to make their lives as fulfilled as possible. If the Stauffers did not have the opportunity to make money off of Huxley’s adoption, I’m not sure they would have adopted him at all. Let their story serve as a lesson about the importance of being earnest.

Stepping Out of my Comfort Zone

So, something interesting is happening. As some of you know, I’ll be a second year Master’s student and that this blog is a platform for me to voice my opinions and concerns about disability studies.

Well, I have the opportunity as a no longer new student to mentor an incoming Master’s student, and the student I will be a mentor to is legally blind.

She has already asked me if I know anything about assistive technology, which I do not. Most of my experience with disabilities surrounds people with developmental disabilities like down syndrome or autism, so her using me as a resource to help her succeed in her first year is extremely important. I now realize how much I don’t actually know about other disabilities that many people have, like blindness or deafness.

Recently, reading the Disability Studies Reader, I even made an offhand comment to some friends that I didn’t care for reading about the sections concerning blindness, deafness, or physical disabilities, as I felt it wouldn’t pertain to my thesis. I now realize just how ignorant that statement was and am now taking an interest in learning more about these types of disabilities and learning what our university offers for people who need assistance.

I will make it a point to do more learning on the use of assistive technology and continue to update what I am learning about it here.

I am thankful that I have been assigned to mentor this student as it will help open my eyes to the vast array of disabilities that I haven’t really encountered before and act as a teaching lesson to broaden my horizons.