Assistive Technology

Last summer I was thrust into the world of assistive technology. I was a mentor to an incoming master’s student who is blind who uses and inquired about assistive technology. I had no clue what her options were or what resources would best benefit her.

My knowledge of AT was slim to none. I had heard about people who were nonverbal using it to communicate with others but never considered the other types of AT out there.

What I quickly learned was AT doesn’t have to be innovative computer activated technology – it can be anything that helps improve the functional capabilities of those who have disabilities. AT can be as low-tech as a wheelchair, or as high-tech as a specialized computer system. It can be a prosthetic limb, a walker, or a communication device. We have encountered many forms of AT and just didn’t know it was called AT.

Aside from the more familiar types of AT like wheelchairs, the more advanced type of software used is what I was largely clueless about.

For my mentee, she utilized audio books and e-readers, and text-to-speech options on her computer so she could read for class. However, some old texts like Beowulf posed some issues. There were no audio versions for her to listen to in the old English style for her. There was an option for her to read using Braille, however, she was not as familiar with Braille and it slowed down her reading tremendously.

Braille in and of itself is a form of AT, but for the purpose of this class, she wouldn’t have been able to hear the way the words would have been pronounced had she been able to listen to it. The argument could be made that the students who are not blind also wouldn’t have been able to hear the pronunciation either, however, perhaps seeing the words spelled out using the alphabet made a difference or perhaps their books had notes about the pronunciations that the Braille copy didn’t. This is all just speculation but it shows the importance of AT and literature coming together to create a more functional resource for people who are blind.

Another argument could be made that people who are blind should not rely so much on the more high-tech versions of AT and perhaps familiarizing themselves with Braille would be useful. But this begs the question that if people who are not blind or who do not have a disability in general are allowed to adapt our ways of living and learning new and improved technology, then why not a blind person or a person with any disability?

If we have the means to produce better quality AT that is more functional, then why not? It also shows that we need students to care more about the humanities. It seems a bit paradoxical that to care about subjects that tend to get pushed to the wayside like literature and history, in favor of more technological fields like computer science and engineering are exactly what is hindering people with disabilities, like blindness, from being able to study older, historical phenomena. But I digress…

Basically, we need to meet in the middle to move forward with different types of AT. A balance of older more functional and accessible types of AT but begin integrating and making newer types AT accessible. And we need more engineers to start realizing the importance of AT. Making it known that there is a wide market for AT and being persistent is the best way to get people to pay attention to those needs.

Adaptive Clothing: A New Fashion Statement

I just discovered something pretty neat in the world of fashion! Tommy Hilfiger has an adaptive clothing line called Tommy Adaptive for adults and children with disabilities, making getting dressed in the morning easy, functional, and stylish.

Launched in 2016 the Tommy Adaptive collection was inspired by Tommy Hilfiger’s own children with autism and is designed with the user in mind. There are pieces designed for those who use wheelchairs, such as pants with a shorter front rise to reduce the fabric from bunching up and a higher rise in the back for more coverage.

There are button-down shirts, shirt dresses, and pants with hidden magnetic closures and faux buttons that have the same classic look giving more independence to those who have limited dexterity.

Along with magnetized buttons, are one-handed zippers on hoodies and jackets that are magnetized at the base. Check out the video below:

Tommy Adaptive is taking a step in the right direction. Creating clothing for people with disabilities includes them in the world of fashion allowing them to not only look and feel stylish but also includes them in the modeling part of fashion. Who better to model adaptive clothing other than the ones who will be wearing it?

The main downside to this is cost. Of course, Tommy Hilfiger is on the more expensive side of fashion and many will not be able to afford a higher-end brand like Tommy Hilfiger. However, with Tommy Hilfiger paving the way, perhaps other brands will take note and create their own adaptive lines making adaptive clothing more mainstream.

According to an article by Vogue, adaptive clothing has been on the rise not only with brands like Tommy Hilfiger but Christian Siriano, Zappos, and Target. The article notes that many people cannot afford such luxury brands like Hilfiger and Siriano, but still the focus mostly remains on the high-end side of fashion. Of course I don’t expect Vogue to linger on brands that are not high-end, however, I do think since it is the fashion magazine, Vogue should have a little more responsibility to bring this issue to the forefront and advocate for more affordable brands to follow suit.

Getting the ball rolling in and of itself is great – we need people to know that there are options available for people with disabilities but we also need clothing brands to have more inclusive clothing options as well. The more noise we make in the fashion industry, the more likely brands will adopt this practice.

You can shop the Tommy Adaptive line using this link https://usa.tommy.com/en/tommy-adaptive

The Silly Times

As much as I want this blog to be informative about disabilities, I figured a more light-hearted post would be a nice change up.

In this post, I will share some funny stories about my brother who has Down syndrome. These aren’t meant to embarrass him or to be mean spirited. Sharing these stories is simply to show how our relationship as twin brother and sister as well as our family dynamic is just as typical as any other.

This first story took place just this very morning:

I was on the phone with my brother and we were just catching up talking about our plans for the day and I told him I had some chores to do around my apartment like laundry and packing for an upcoming move. He told me he was proud of me for doing chores. I asked if he was going to do any chores for our mother today and he replied, “Probably not.” And if that doesn’t encompass his personality perfectly, I don’t know what does.

This one is from our childhood and captures the brother/sister relationship perfectly:

As typical siblings do, my brother didn’t always want to hang out with me when it was just the two of us. But when I had a friend come over, suddenly he wanted all my attention, which I did not want to give him because I was too busy with my friend. He would drive me insane! He felt like once a friend came over it was time for show and tell. He would pop in my room over and over to show us a toy or tell us a joke and me, being the mean sister I was, did not want him interrupting my girl time. On one occasion, when annoying us by interrupting valuable friend time proved fruitless, he decided to steal some of my Barbies and my mother caught him mid-act of getting ready to throw them at the top of his closet. His logic was pretty sound if you ask me, get rid of public enemy number one: Barbie, and then we would be forced to play with him. I was not happy of course, but now his little evil genius ways make me laugh.

This last story is from a family vacation from when we were about age 10 and is still one of my favorite stories:

On a family vacation to Tennessee, we had planned to attend a magic show. One thing you need to know is that my brother has two fears: birds and bad weather. The billboard for this magic show had a bird on it along with various other animals that would be featured in the show. My brother being terrified of birds made a huge fuss about not wanting to go. My parents had already bought the tickets and we weren’t going to let him ruin a good time, so my parents, like any other parents, swore up and down that there weren’t going to be any birds so he would cooperate. Well of course the final act of the show included a bird (a duck or a goose? I don’t remember) and he had a fit and my mother took him to the lobby until it was done. And remember that other thing he’s afraid of? Bad weather. Well, we also sort of assured him it wasn’t going to rain, so naturally, when we went to leave it started pouring outside. Once we were all in the car, my brother told our dad (because of course everything is always Dad’s fault), “You lie like a bug!” We all started laughing and he was so angry, even more so because we were laughing. Instead of saying, “You lie like a rug” he said “bug” which we thought was so funny because he really thought that he had the right phrasing and said it with so much vigor that we couldn’t help but laugh. He was right about the lying though, there was a bird in the show and it did rain. Even though it wasn’t funny to him at the time, now my brother brings it up as a funny memory from that vacation.

I hope these light, cutesy stories bring a little smile to your day and we can all take a look back and laugh at the silly moments.

Happy Friday!

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.

Proud to be an Aggie!

Great news has come to light and I am only just finding out about it, and as usual, am late to the party. Aggie ACHIEVE is a new program designed to give students with intellectual and developmental disabilities the full college experience!

Texas A&M Today’s website states, “students will live on campus, participate in classes and serve in clubs and organizations.”

The students will also have Aggie ACHIEVEmates who will help integrate them into college life and be a companion to help them with building good study habits, being a lunch buddy, and helping with coursework, as a few examples.

This is so exciting! At ULL where I got my bachelor’s degree, we had a similar program called the Life Program. I’m so happy to see that this movement of inclusion is gaining traction and makes me proud to be an Aggie!

*Update*

Just a quick update: I met my mentee who is legally blind at orientation and it was amazing seeing the professors who are so willing to go above and beyond to help her get the correct resources she will need for her classes this year. I will help her as much as I can as well, however we have such knowledgeable professors and staff who have expertise in what she will need. This also makes me proud to be an Aggie!

Gig’em!

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.