The “DIFFERENCE Is Not DEFICIT” Project

A New Community Vision for Special Education

Our schools are not built for a typical students. In fact, it seems we have specifically built systems that aim to pathologize and marginalize anyone outside the so called “norms.” So despite the work of civil rights activists, and fields like disability studies, many students with “invisible disabilities” find themselves lost in the chaos of schooling designed for a very specific type of learner. 

These systems do not just make life hard for students or parents. Many educators, eager to help and understand their students’ differences, find themselves limited by the rigidity of the traditional special education system. But the truth is, change is possible and individual people, students, parents, therapists, advocates, and educators continue to fight to make necessary changes. The Difference is Not Deficit Project is a place to share the individual stories of these struggles so we can use them to improve the system from the inside out. Stories matter. Each of our failures, fights, and triumphs matter. 

How did you feel? How did you fight? How did you fail? How did you overcome? Please share your unique story so we can learn from your experiences and work to build a more just system based on our shared struggles and our common goals. 

Share as much or as little of your information as you like. All the fields are optional so you can submit your story completely anonymously if that’s your preference.

Anonymous

Oct 02, 2022

Special Education and Educational Therapy promote ableism because both fields essentially function with the goal of supporting students in order to help them achieve at the same level as their neurotypical peers or fit in better with their peers. Essentially, both fields center the needs of people in power because the work we are expected to do is designed to teach learners how to conform to the standards of traditional schooling, which is determined and policed by people in power. 

Typically, students are recommended for testing if they “stand out”, are struggling, or not functioning at the same level as other students in the classroom. Usually, a family member or teacher brings the student’s behavior or performance to the attention of others on the basis of how well they are functioning within the status quo. For example, if a student seems to be more energetic than others and needs to move around in order to focus when most of the other students in a classroom sit still at their desks, the energetic student will most likely be recommended for evaluation and testing. The student’s performance and behavior in class and at home is evaluated by teachers, family members, and others who are able to observe this student in an educational setting, and based on those observations, the student is tested and diagnosed. The process for diagnosis is ableist because standards for observation and testing are based on what neurotypical students are able to do and what the student in question is not able to do. 

Special education and educational therapy practices in schools and classrooms are also ableist because the way in which both fields are expected to support students in a school or classroom setting is all based on helping students function at the level of their neurotypical peers. School and classroom rules/expectations are typically set based on how the adults in these settings want students to conduct themselves, and not usually based on what each individual student can actually do. Granted, some expectations are set based on safety, however, many rules and expectations reinforce bureaucratic policies, mindsets, and whit supremacist culture. For example, most schools are required to conduct standardized testing, sometimes multiple times a year. This is a required practice statewide and nationwide and results are used to determine levels at which our young people are “achieving”. We all know that standardized testing is a one-size-fits-all model, there is no space for neurodiverse minds to share what they know because standards are based on what folks in power think neurotypical students should be able to do. Additionally, most schools receive funding or recognition based on their test scores, which holds so many other implications, such as teaching to tests, lack of resources, and school closures. The day-to-day operations of school and classrooms inherently benefit very few students and leave many behind, including neurodiverse students. 

Additionally, there are a disproportionate amount of BIPOC students and students from low-income households represented in special education or not being evaluated and supported early enough and so we have to question whether the system we operate in makes space for these students’ abilities, values, and cultures. Schools are already violent spaces for BIPOC students, which means there really is no space for BIPOC neurodiverse learners because the education system in the United States was not built to serve them.

My story of systemic injustice is centered around the story of a young Black male student I worked with who struggled behaviorally, academically, economically, and in his family life. The student was in 6th grade, had already been expelled from three different schools, and was in danger of being expelled from the school where I worked. This student was hungry for learning but was struggling to pay attention in his classes, follow classroom expectations, follow school expectations (he was always fighting), and with housing. He had been struggling with these difficulties all of his life, and no other school had taken the time to meet with his family, get him assessed, and get him the (limited) care the school district offered. He was basically falling through the cracks, so I worked with several support staff to try to get him some help Home life was difficult and the student support team struggled to connect with his guardians. We also learned from his grandmother that previous assessments revealed the student may have been showing signs of bipolar disorder, and so it was all hands on deck to try to get this student the support needed and protect him from being expelled from yet another school. What this student needed was assessment and support in a school that could help him understand not only how he learns, but also the societal factors he experienced every day of his life. This child did not have the privilege of just working through his experience as a learner because he also needed support surviving systemic and institutional traumas. Our efforts to support this student were not excellent, but we tried our best to support him in an educational system that does not have structures in place to support students like him, of which there are a lot! As I transitioned from interim Assistant Principal back into the classroom, I enlisted the help of the Okay Program, which was run by Black male police officers to support young Black men in schools and bridge the relationship between Black males and the police. Our site representative took the reins on visiting the student’s family, working with his mother to sign the necessary paperwork, and get the process started on having the student assessed for bipolar and learning differences so that he could qualify for a school with on-site counseling and housing programs. Ultimately, I still don’t know if the route we took was the best for the student because we were still operating within a broken system, however. Something needed to change for him and I do believe he experienced some positive change because of our efforts. 

 

 

Anonymous

Aug 25, 2022

Having known accommodations creates separation between students in the classroom, however not accommodating more severe disabilities or difficulties can cause worse problems down the line for the student in question. Additionally, singling out, not granting IEPs, incorrect or misinformation regarding diagnoses (which creates issues with the understanding of the presentation of disorders), having a lack of information of things like CAPD, and treatment being mistargeted to assume that someone is more able or less able than they actually are can all do the same, further enforcing the power hierarchy of special education.

Within schools, some special education teachers can harbor biases and focus on students who have more difficulties than the others rather than focusing on the strengths of students who are succeeding despite the challenges they have overcome. They may also give less attention to those they perceive to be more abled.

Many special education teachers can be ableist. The name “special” education sounds patronizing, and some special education teachers have a savior complex or a sort of feeling of superiority for helping this minority group. The needs of an autistic person are not “special” needs. They are only “special” because our world is not made for them and is not inclusive. Their needs have not been considered seriously in the past (and present, seemingly), and are thus deemed as exceptional, so they are “special.” The term “special” needs makes it sound as though we are doing them a favor by accommodating them or that they are a burden on society when in reality they are seeking to be able to have as much success as a neurotypical person. And, as such, most of the people who make the laws and the decisions are neurotypical and therefore do not understand the struggles that disabled people have to even reach the same playing field as them. The way we “include” and “help” the disabled is in a way that makes them assimilate to a system or situation created for neurotypicals. The term “disabled” is also ableist in and of itself; it says, “If you’re not like me, you are disabled and I am abled,” with the subtext being “I’m better than you, I am the standard.” In reality, technically no one is disabled; people are just differently abled in a society not conducive to them, therefore disabling them and subsequently labelling them as “disabled” which continues to disable them further.

Finally, laws and policies that deal with disability rights are often ableist in their language. IDEA, for example, uses very vague language and states that those with disabilities are guaranteed “access” to the services they require. It does not, however, guarantee that they will receive those services.

A previous client I worked with experienced ambivalent ableism within his segregated Special Education school. He was in a highly limited environment with teachers and social workers that did not value or respect him and his disability. His mother once expressed frustration and concern about one particular teacher who would yell at her son if he wandered off and would swear at him and grab him roughly. The system was set up to protect the teachers, as they were “special ed teachers” and “knew what they were doing,” as well as other workers as opposed to the children. When his parents brought this to the school, the administration and other faculty vouched for this woman, and the school authorities and teachers did not make any changes regarding her involvement with the child or her poor behavior. This was apparently one of many times the parents had brought concerns to the school and received no response or action, only affirmations of the teacher who was continuously abusive towards him just because she had the power to be. The system invalidated this family’s concerns and ability to do anything about it. Because I was employed by a private ABA company, I had no involvement with the school. I did, however, work with the child’s mother, hearing and validating her feelings and experiences. I continuously assured her that I and my team would help her. I advocated for her and her son by bringing the concerns to the BCBA and case supervisor so they could more closely work with the parents and formulate a plan and a way to communicate with the school without fear of retaliation or any consequences or further danger to her son. It was difficult for me to act as an advocate solely because of my limited ability as a BT to be involved, but I was able to direct the student’s parents to the right person who could remedy the situation and improve their son’s education experience and safety. 

 

 

Position (Mom), Diagnosis (ASD and ADHD)

I am frustrated at my 3rd grader struggling with work and students in school saying things bc he is slower can’t pick things up as quick. LAUSD just Doesn’t want to give him the educational help he needs to succeed. Traditional methods and repeating same instructions DO not help him make the connection s himself. Making him go to after school extra classes defeats the purpose of school having to TEACH him materials. We helped teach him in 2nd grade zoom class. We tried our best to teach him a way he can learn, end of 2jd grade math and reading were 2nd grade 7 mo level. We send him to school, 1s5 quarter 3rd grade with RSP and teacher there, his reading dropped substantially, and math didn’t improve by much! He is still at 12% reading and math about same. How can you say school has helped him? He hates school bc it’s hard. He has ASD and ADHD and he knows he’s different and “wishes his brain worked like other kids” Heart breaking when school thinks they are doing good, but actually, no. They can’t teach to his learning, and they don’t know how. Pounding in the same neurotypical way of learning, and not finding a way of learning to help him see the aha moments would only make his learning gap further from his peers!!! I am tired of this and want to tear my hair out. He has the IQ to accomplish in school, and even has the talent to learn the most awesome things. He is super smart but the learning connection is not there.

Still no 1:1 to help. Still no LMB or OG or other methods of teaching him. I am still teaching him naturalistically about physics, math, science, using video games on why building this certain building won’t hold: and how to get the correct speed and force/s to run a rollercoaster- create G forces, etc, or how the Big bang theory started and advancement of science, and what elements and neutrons look like… And how they become and make gamma rays. Frustrated mom.

Anonymous

What do you do when your one year old does not respond to his name, fails to call you mommy, and does not point to any object being referred to or fails to make eye contact? The alarm bells ring but you still hope and hope that he will start talking soon, or will interact better with his peers? Yet the nudging fear remains something to amiss?

Being a health professional myself, I could not ignore the signs of autism in my first born. With the help of paediatrician and child psychologists, a diagonosis of autism spectrum disorder was established.

Accepting it and trying to provide the best possible intervention in terms of speech and behaviour therapy were my initial targets. Luckily, once speech improved I was able to find an inclusive school, where he could be a part of a regular class with a shadow teacher who would help him move from one task to another, or calm him down when the situation got overwhelming. Another 2 years passed, and he assimilated into a routine, now without the resource teacher. The structure provided by school life helped and my son did not want a miss single day of school. However, social challenges remained and even a loud happy Birthday would result in sensory overload and often a meltdown.

The tricky part of this journey has been to pre-empt any stimulus or situation that leads to a meltdown or aggression because he is unable to vocalize his feelings quickly and simply lashes out when he feels he cannot cope. The heartbreaking bit is when he is bullied for being different or he realises he cannot be a part of the crowd. Growth spurts are tough and with neurological development, ADHD arose. A child psychiatrist prescribed catapress which helped him focus on school work.

Such is life, and one cannot be prepared for its various twists and turns. Adolescence kicked in and with the rafing hormones came a new set of problems. Ultimately relief was obtained with lithium and resperidone.

Awareness, acceptance and patience are keywords into raising such an individual, but building an includive society is the real target. As a parent and caretaker, I promise that raising a child who is on the spectrum may be difficult but definitely rewarding. Its just a question of unlocking their potential.

Position (Mom), Diagnosis (Autism and ADHD)

I was officially diagnosed with autism today at the age of 35.I feel kind of empty. I am not upset that I am autistic, but I am devastated I spent so many years not understanding who I am at such a core level.

I feel sadness for the little girl that could not soothe herself. I am sad that her parents were not given resources to understand her better. I am sad that they feel guilt. She always felt their love.

I am sad for her inner turmoil from math problems ending in certain numbers that made her squirm and would occupy her every thought for the rest of the day.

I am sad others didn’t share the overwhelming elation when she found palatable patterns. She felt like others must be experiencing similar perspectives and it is shocking to understand that they probably didn’t notice or care.

I feel for the girl reading, crocheting and doing endless backhand-springs (She made it to 22) because the other kids often didn’t play with her at recess.

I am sad for the girl that wore her clothes inside out and realized it later in the day at least 12 times in school, 4 times as a teacher including meet-the-teacher at a new school, and numerous times as a stay-at-home mom despite the devastating mortification each time.

I am sad for the girl that was bullied in school for breaking the curve and talking too much.

I am sad at the guilt and resentment she has carried all these years for her inability to quell her loquacious nature and her interruptions of others. I am sad that she felt so much regret for how she made others feel in these fleeting moments, and that she felt her character was flawed.

I am sad that others would make fun of her for being overly literal and missing sarcasm throughout her whole life.

I am sad for all the headaches and racing heart from smells, lights and loud sounds. I am sad that nobody really understood the real extent of the overstimulation she endures constantly.

I feel sad that she trusted people so fully because she (still) doesn’t understand why anyone would deceive her or anyone for that matter.

I am sad that she felt like a failure every time she had a meltdown in her marriage or as a mom. I am sad that she lost control over things nobody else noticed or cared about.

Mostly I am sad that she thought she wasn’t worthy or that there was something wrong with her. I am sad that she felt like a terrible person for not living up to insanely high standards in a world that was not designed for her.
* * *
I am sad because I am not wrong or less than, I think differently. I think beautifully.

I am incredibly honest, and I don’t lie because I don’t want to. I have the energy of a puppy at times, but with it comes an enthusiasm for life that is both unrivaled and infectious.

I may not always look at people’s eyes, but I can see the beauty within them. I genuinely look for the good in everyone and want to make others feel good about themselves.

I have an insatiable desire to learn anything and everything in excruciating detail and cannot wait to share knowledge with the world.
Because of this, despite being 35 and suffering from multiple, painful health conditions, I still believe my life is just beginning and that my options are as vast and limitless as the stars in the sky.

I may struggle to interact socially (or at least inwardly, under the mask), but I am very loving with my close circle. I give my whole heart to those I love. I am happy that some people truly love me for all of it.

My brain is beautiful. I am autistic.

Nicole’s Story (Parent)

 *S E N S O R Y •
Joey has difficulty with certain sensory things, the main one being touch.


He doesn’t like to touch certain textures like paint, play doh, or runny foods like soup or curry. He does however love to explore hard, bumpy or textured surfaces, and you’ll often see him running his hands over walls, railings and the ground 🥰 he also loves to be held tightly, and to be stroked and tickled! 💙


Joey has always hated having his hair cut, using a hood, or wearing a hat. Even from being a baby he always hated wearing a hat or hood, and I always felt guilty in the winter when his head would be wet or cold, but he would have a meltdown whenever we tired 😫
Today I tried him with a hat… and he wore it 😲 he wore it on a long walk, at the park, and all the way home. I couldn’t believe it!


Super proud of my boy, I know it’s only baby steps but to me this is a massive accomplishment and shows how he’s developing and learning 💙

Position (Teacher)

I actually think we have a really good special education system in our country. There is ample money from the federal government for special education programs. I also think it’s great that we have inclusion. Students with IEPs do well in my science class because I differentiate my teaching and make sure I include a lot of visual, hands on experiences for learning science. I also make sure I pair students up with others who can help them in team so they never feel lost. The regular students also benefit from the accommodations and differentiation we provide for students with special needs, so learning from the needs of our special students is beneficial for everyone.

Position (Teacher)

I would never say this out loud, because I absolutely believe in inclusion, but I don’t understand how we as classroom teachers can be expected to truly tend to the needs and differences of our learning disabled students when we have a class of 30 kids, demands from our administration, parents, and the job itself. I easily work 60-70 hours a week, and see as many as 150 students a day. It’s easy to blame teachers and expect them to do the impossible, but we are not trained in special education. We make any accommodations we can and offer as much support as possible, but every time I hear all the talk about inclusion and differentiation, it just sounds like things administrators like to say because it sounds good. We can barely get students to follow the main curriculum. How are we supposed to differentiate for all the different needs students come to us with? I’m sorry. I feel terrible. But this is what we teachers talk about behind the scenes.

Anonymous Story

I wish there was more active learning at school. That way we wouldn’t be stuck sitting in classrooms all day long. Active learning doesn’t have to be playing foursquare or hopscotch. Kids can actively learn by going outside and studying different species in nature for science class, or count how many maple trees are in one area and divide it evenly between their classmates for math. Active learning can also be implanted into fitness the class could go for a run and when you get back you can turn it into a math problem. If Jack ran 10 miles, Jamie ran 5 miles more than Cassandra but two miles less than Jack how many miles did they run total. Why can’t we do that? That would be so much better than having to sit quietly at a desk all day.

Anonymous Story

My first experience of disability was in first grade. I was the star student of my class, which was quite rigorous for a first grade classroom and excelling gave me such joy that I could not think of a better place than school. One day, we had a school field trip which included students from all the grades, 1-5. As a rule, we as first graders rarely got to see, much less hang out with the fifth graders and since becoming a “senior” one day was my biggest dream, hanging out near all the fifth graders all day felt super special. When we were told we would all get to
have lunch together (not separate like it usually was at school), I was ecstatic.

But when we all went to sit at the large communal table they had set out for us at lunch, I noticed a fifth grader I had never seen at school. I watched her walk off the bus and walk over to the table with the rest of her fifth grade class except that she was much smaller than them. She was even smaller than me!

Until that moment I had never seen or heard of a little person. I remember looking at her in shock. Why was her head so big? Why were her arms so short? But despite her jarring appearance to me what I noticed was the expression on her face. She looked so sad. Her head was tilted down and for the entirety of lunch, she never gazed up, not once. No one spoke to her. Her teachers or classmates barely acknowledged her. She sat there, alone, ashamed to be with her class, ashamed to be seen by us younger kids. And something about seeing her, the weight of her sadnesses, the way she didn’t look like any of us, just broke something in me. I realized that day that school wasn’t fun for everyone and that it wouldn’t matter how good I could be at school, what difference did it make when someone else could feel so bad, and not because they didn’t try or didn’t do homework, but through no fault of their own.

I’ll never forget that fifth grader or her sad eyes. She doesn’t know this and I didn’t know it for a long time either, but she played a big role in my wanting to be a teacher who works with different kids. I never wanted to see someone feel as sad as her in a school and I wanted to help. I hope she could know how important she was, even then, when all she felt was sadness.

Anonymous Story

When i was in the 4th grade we were walking up the staircase back to class when my friend tapped me and it felt like a hit but i stayed calm and put my hand on his shoulder when he slipped on the stair and it looked like i had pushed him even though i didn’t so me and him had to have a talk with the teacher and she made me walk with her all the way back to the class room and stand outside with him and my teacher while all the other kids in my class were able to do their work in class but we had to have a talk. I was trying to tell her what had happened but she kept on talking over me and not listening to what i had to say. I was so annoyed and i felt angry and also nerves. This was the same feeling i had when my teacher was teaching a subject and i spaced out for a moment and then spaced back in and she asked me a question that was easy because it was written on the board but she told me that after the fact, and i didnt now what to say because i wasn’t focusing at the time and i felt nerves that someone would make fun of me or the teacher would call me out for not hearing what she had said. I wish teachers would understand that not everyone is like them and that everyone is different.

Anonymous Story

As a coming in 9th grader, middle school was really hard for me. Especially because of the environment I was in it felt that I wasn’t smart enough to be there. While being surrounded by all these kids that seemed to know what they were doing in class or for any of the assignments I felt even more lost and confused. But as time went on I got closer with some of the students and even have of them were as lost as I was! Even now I still am a little loss, I struggle in many of my classes. I wish I didn’t have to take math or Latin class I wish that my teachers would and would’ve understood how frustrated it made me. Sometimes I wish that I could just drop out and never have to do school again. Sometimes I want to give up and never have to do another piece of math again but I know how disappointed my mom would be. That’s another thing my mom. I feel that she has a certain perspective about me that I’m lazy which makes it even harder for me to try my best in school when it seems like my mom doesn’t even really have faith in me.  It’s crazy because we all feel like it’s just me and I’m alone but I hope that you know that it’s not just you and that there’s at least one other person who understands.

One of One Educational Therapy provides in-home and virtual educational remediation, tutoring, and executive function support to neuro-diverse students in Los Angeles and the surrounding area.