Too often, whether intentionally or unintentionally, those who are most able, are also most privileged as it relates to the access and opportunities the world has to offer. From citizens who are born left-handed to citizens who are born with disabilities (both minor and significant), these citizens are often forced to find ways to adapt to a world that is built, which is designed to meet the needs of those citizens who are most able. While legislation has been passed to try to reduce some possible “barriers” to afford those who are defined as “less able” an opportunity to have some access; these regulations are often minimal to say the least with the burden primarily resting upon the less able citizen to adapt. These practices are built upon a deficit mindset model which is rooted in ableism– “the devaluation of disability.”
No matter how dedicated an organization is to inclusivity, ableism is rooted throughout all public and private institutions; and our schools are no exception. Sadly, our educational system is the first place where citizens are indoctrinated into ableism, which often “result in societal attitudes that uncritically assert that it is better for a child to walk than roll, speak than sign, read print than read Braille, spell independently than use a spell-check, and hang out with nondisabled kids as opposed to other disabled kids” (Hair, T., 2022). Focus on Student Disabilities Adds to Educational Deficits | Harvard Graduate School of Education.
Schools are microcosms of the larger society. Thus, despite their greatest attempts to remove some of the barriers that may exist for students with disabilities, special educational practices as a whole are based on individual needs instead of universal design for all learners. Even with the best of intentions, school-based supports are generally limited, and students with disabilities may not develop the necessary skills to be transferable to a larger world.
It would be negligent to not acknowledge the challenges and costs that educational institutions face with trying to meet the diverse needs of students, especially those with disabilities. While there are challenges, it doesn’t mean that there aren’t ways to overcome these challenges for the betterment of all students. The world has seen medical, business, entertainment, and even sporting institutions, just to name a few, transform their practices to be more inclusive and accessible, especially since COVID. Yet, despite our greatest attempts, education, and the way we deliver instruction and support to meet the needs of student has remained relatively the same for decades. At some point, we must ask ourselves why? Or better yet why not? Why not change the way we provide instruction from primarily meeting the needs of those who are able/average, to developing a universal system that meets the needs of all. Some might refer to this as equity.
Perhaps the first place to start is with our mindset, which coincidentally is the hardest thing to change. But just because something is hard, doesn’t mean it isn’t doable or worth pursuing. Perhaps one reason this deficit mindset of maintaining instructional systems that privileges the able (whether intentionally or unintentionally) persists is because we often don’t see the world from the perspective of these students and families. We don’t see their everyday challenges, desires, dreams, or the impact that an ineffective individualized education program is having on them, which explains why they fight so hard to ensure their IEPs are optimal. Let’s take some perspective…from a student’s voice:
Student Voice: EJ
EJ is a 16-year-old high school student, who attends a high school located in a county in the United States (this student and school is located of Ohio). It must be noted that Ej and his family lives in a small city outside of a large metropolitan area, that is heavily populated with farmland. He is a junior and has two cochlear implants. He has 2 older sisters and 1 older brother. All of his siblings are hearing able and have done well to exceptional in school. His family is middle class, and both of his parents have advanced degrees. Ej’s father is a veteran, who served in the U.S. Armed Forces, for over 10 years.
Ej was diagnosed as deaf at the age of 16 months (1 and a half). Ej was provided with an IEP by his school district in preschool (3rd birthday). His parents also had to pay many out-of-pocket costs through private medical therapies for him to receive the level of supports that he needed- signing, FM system, adaptations, etc. This is what Ej has to say about his life in school:
What’s it like being a child with a hearing impairment in school and how school has been for you?
Ej: “Well it’s very difficult, very complicated, I will say that.”
What makes it that way?
Ej: “Trying to fit in and trying to find social groups and find people to hangout with.”
Does the school help with that?
Ej: “Our school is overcrowded.”
Do you feel like you have been able to find friends?
Ej: “I have a few, I talk to my friends about my struggles, my siblings also help me to try and find friends. DeAnna and Leah helped me to learn ASL; My dad has been helping me to build some self-confidence, but it’s working and it’s getting better. It’s a slow process.”
What would make things better?
Ej: “If they added like a deaf class that everyone can join so that they all can see how it feels to be part of the deaf community. Kids that have disabilities are out and stranded and people don’t understand how it is to be in their shoes.”
If you had a magic wand and could change anything in the world, what would it look like?
EJ: “Creating an app that people could download worldwide that has an AI system that explains how the deaf community works and other social platforms.”
What are your fears about graduating?
Ej: “Graduating and figuring out what I want to do; driving alone by myself still, I still have a fear of talking to people, mainly being stuck in my own world and having a void.
Do you see yourself with a family?
EJ: “Yes, I do want to get married and have two kids, don’t want to have too many children.”
Do you have a preference for what type of person to marry as it relates to an able person versus a person with an impairment in hearing like you?
EJ: “Wouldn’t mind marrying someone with a hearing impairment, but I can marry someone without, they just need to know about hearing impairments.”
Tell me more about the driving?
Ej: “Driving alone- people get distracted on the road, weather conditions, people are texting and driving, and trying to watch over yourself and keeping yourself safe.”
Tell me more about what you mean when you said talking to people is fearful.
Ej: “Talking people-get shy talking to people especially larger crowds, I really get shaken up- with anxiety. People stare at me wondering what’s on my head. People don’t ask questions they just stare at me. If people were to just ask questions, I would be able to answer them.”
Does this happen in school and how is it speaking up in class?
EJ: “Speaking up in class makes me nervous in a big group. I am better in a small group with a few people.”
Tell me about the supports you get in school to help you access learning?
Ej: “They give me an FM system. I have to control the volume on my app on my own. I get it every morning for the day and then I charge it and unplug it.”
What if it’s not working?
EJ: “If it’s not working, I have to tell them or email my deaf teacher.”
How often do you see your Deaf teacher?
EJ: She checks in on me every 2 months.
Every two months?
EJ: ”Yeah it’s bad she is with like every school it’s crazy.
Do feel like you get enough support?
EJ: “No, it’s crazy it’s just…
What does she teach you or how does she support you?
EJ: “She just asks me a couple of questions about the FM, my cochlear, grades, and if I am comfortable in the class.”
Is that it?
EJ: “She is doing a little better with talking to me about stuff.”
Where do you feel you get the bulk of your help and support to learn and access school?
Ej: “Mostly it’s all on me and my family and the school a little.”
What does school do in general?
EJ: “School only does sign language online in a course which doesn’t really help; we need more hands on.”
How many students are hearing impaired in your school?
EJ: “In my school there are a total of 6 of us. Two of us with cochlear implants. Ffour with hearing aids.”
What does a therapy session look like when you all are able to mee with your deaf teacher? EJ: “We do small group talking when we meet which is depending on the schedule. We haven’t done a meeting with the group for two months and we meet with the deaf teacher.”
Do you have any other access to other resources to help and technology in school?
Ej: “It’s costly to get resources and technology, at least that’s what our school says.”
You mention practicing being social earlier, is there anyone special that you like in school?
Ej: “Yes I like several girls.”
Have you told them?
EJ: “Nooooooo” (laughing).
Why?
EJ: “A little shy, hopefully it will come around.”
Any extra-curriculars?
Ej: “I’m taking some art classes in January. I’m trying out for theater and tech.”
Who is helping you with any of that?
EJ: “I’m doing research about it and my sisters at home.”
What other stuff do you like?
EJ: “Video games, game design, car drafting, making music.”
Tell me more about your music. “
EJ: Started making music initially in 8th grade, but 10th grade year is when I started doing lyrics and now adding music.
What do you write about?
EJ: “My life; explaining my school stuff, and stuff.”
What supports(s) do your teachers provide?
Ej: “My teachers don’t really check up on me. I have to go to them to ask for supports. I’ve gotten much better since freshman year. My dad has helped me to learn how to speak up for myself.”
Any final thoughts?
EJ: “Society needs to be better for all people with disabilities not just the deaf of hearing. The world just has to do better for everyone. It’s hard when you have a disability and it’s all on you.” Anything else?“Protections while driving for people who have disabilities.”
EjJs perspective about the services he has and is receiving exemplifies that barriers of access continue to exist and that our planning around them have not been successful in meeting his diverse needs. What if, it was your child being denied access to a quality education that affords them the opportunities that able children who do not have disabilities will have access?
Because schools are the places of indoctrination for life, we have the power to influence what those things are that we indoctrinate. We should view the needs of our diverse students as opportunities to evolve in our abilities to provide an education that meets the needs of all our students. In order to do this, we stated earlier that a mind shift was necessary. Because shifting someone’s thinking is hard and takes time, we may need to begin to shift practices simultaneously. It starts with a simple formula offered by OCALICON- A+B= C; the A stands for “access”, B stands for “belonging” and C stands for “community.” If we start building practices around these concepts, we can begin to build programming that is inclusive to meet the needs of all.
In closing, we challenge our readers, who work in the field of education, to make a new year’s resolution regarding meeting the challenges of inclusivity and universal design in your work (no matter what capacity you work in education). To help with implementing your goal, we have provided a link to a padlet of resources from the 2022 OCALICON online Conference. 2022 SST 13 OCALICON Inclusive Education Winter Wonderland (padlet.com). On this padlet, you will find many strategies, resources, and other valuable information from the conference to assist you in moving your systems from primarily meeting the needs of those most able, to meeting the universal need of all learners (facilities, instructional practices, community, climate, and culture, etc.).
Warmest Regards,
SST 13 Special Education Points of Contact
Christine, Katie, and Mona