Editor’s note: This is a guest post by Tonia Christle from Tonia Says for a blog series titled “Growing Up With a Disability.”
The previous post focused on The Early Years, and what was important to keep in mind with very young kids with disabilities. Today, I’m moving onto the elementary school years. What impacted me the most during that time was ableism (discrimination against disabled people). However, I didn’t even know that what I experienced had a name. Discrimination can affect your child, even this early on. I’ll also include tips on things parents can do to help a child who is experiencing ableism.
Elementary school started out a happy place for me. Although my family moved a lot during that time and I attended a new school almost every year, I was mostly happy, even though it was difficult to make friends. I liked school and got comments like “Great sentences!” and “Very good! Well-written!” on writing assignments.
A crayon self portrait pictures my whole body, including my walker. I am smiling. At the top, it reads: It’s Me, Tonia, I’m in Second grade!
By the time I began fourth grade, though, things had changed drastically. Previously, I had been very social (especially with adults) and eager to please. A Physical or Otherwise Health Impaired Report (P.O.H.I.) from that year showed a shift in my behavior:
The students seemed very helpful to her, taking her backpack and jacket to her locker… Another student moved Tonia’s walker to the corner of the room. I did not notice Tonia thank these helpers.
Tonia then took a book from her desk and began to read quietly using a bookmark to keep her place. The morning meeting was called to order and the children stood for the Pledge of Allegiance. Tonia continued to read and did not stand up. During lunch count, Tonia continued to read and another student called out her number for her.
…When the teacher began talking at the front of the room, Tonia continued to read. When the class was directed to move to the floor for language, Tonia remained at her desk. When the teacher asked if Tonia needed help, Tonia did not respond but slowly slid from her desk to the carpeted area on the floor.
It was less than a month into the new school year.
HOW IT FEELS:
This is what the P.O.H.I. Instructor didn’t see when she came to observe me at the end of September in 1990:
“Make way for Princess!”
She didn’t see how my classroom teacher called me Princess daily, when she didn’t have embarrassing nicknames for any of the other kids.
“Tonia ran the mile today in 45 minutes!”
She didn’t see how I was expected to run the mile in gym class, all alone with just the adaptive gym teacher, completing a certain number of laps while being timed. By the end, I was so exhausted I only wanted to go home.
“You can’t run ahead! The teacher says you could get hurt!”
She didn’t see how the other nine year old girls in the class reprimanded me. (These students were assigned by the teacher to accompany me to the bathroom and then stand by the wall listening while I peed, in case I were to fall.) It got to the point where I was sick of being looked after like a much younger child by my peers, and would run ahead in protest.
“Tonia opened the door to the classroom all by herself!”
She didn’t see how the classroom teacher gave me a Happy Gram (something sent home telling parents of really notable accomplishments) for opening the classroom door myself.
“You won’t be able to earn red, white or blue ribbons on Track and Field Day. There has to be modifications on the events for you to participate. …But you can still earn a red, yellow or blue sticker!”
She didn’t see that this teacher only relented when my parents came to school the very next morning and demanded fair treatment on my behalf.
“The next spelling word is different. Tonia is different from everyone else because she uses a walker. Different.”
She didn’t see how I was singled out and humiliated during a spelling test.
Christmas Day, 1990. I am on the left unsmiling, and my sister’s on the right, a smile on her face.
Expectations for me were simultaneously too low (in the classroom) and too high (in gym class). The low classroom expectations resulted in the sort of passive-aggressive behavior detailed in the P.O.H.I Report. I subtly challenged my teacher by not complying with what the rest of the class did. Accomplishments I previously took pride in (specifically with regard to my writing) were meaningless, as I was sure that my teacher’s praise was undue. My work couldn’t be the best out of everyone’s. It was probably in the middle of the pack. My teacher was just being nice to me because I had CP.
Likewise, when my adaptive gym teacher had a change of heart after the meeting with my parents, I couldn’t take pride in my red, white and blue ribbons on Track and Field Day. I felt like they were fake. I knew administration had been forced to give them to me. If the ribbons accurately conveyed my accomplishments, I felt sure they would have all been red – signifying only participation in an event – not competence or mastery, which I would have been happy with because I would have earned them. The multicolored ribbons, I felt sure, were not earned. I now doubted my own legitimate accomplishments due to skewed expectations at school.
Because of experiences like these which are not rare for people with disabilities, I question, even now, whether people’s motives are genuine when they do or say something nice.
WHAT YOU CAN DO:
1) Watch for Behavioral Changes in Your Child
Experiencing ableism from two teachers at school, as well as my peers, made me feel embarrassed and ashamed. My self-esteem took a major hit, and I began feeling depressed and inferior. However, being only nine years old at the time, I was unable to articulate any of this. I only knew I was being treated “differently” than my peers, and I wanted to be treated “the same.” If your child begins acting in a way that’s out-of-character for them, follow up with them.
2) Ask Questions
Grab a quiet moment with your child, apart from school and stress. Take them with to do something they enjoy, or make a trip for a special treat just because. While you are occupied eating, window shopping or crafting, ask specific questions (the generic “How is school?” won’t work for this.) So, try these (pick and choose depending on your child’s age and comprehension):
“Are you treated the same as everyone else at school or differently?”
“What happened at school today that you liked? What happened at school today that you didn’t like?”
“What do you like about your teacher/school/the other kids? What do you not like about your teacher/school/the other kids?”
“Do you feel safe at school/with your teacher/with the other kids?”
“Do you feel respected at school/with your teacher/with the other kids?”
Ask appropriate follow-up questions, stay calm, and address any self blame your child is feeling. Your child may feel they have to comply with a teacher’s ableism because they are the adult, and children are generally raised to listen to adults. They may feel that their disability gives the teacher a reason to mistreat them, which is absolutely not the case.
3) Drop In
If your child tells you they are being discriminated against at school, don’t be afraid to take a page from my parents and confront school administration. This will not only let the school know you are serious and are paying attention to the way your child is treated at school, it will also reinforce to your child that they deserve to be treated with respect.
You can also make an unannounced visit to the school to check up on your child’s well-being. This is especially important if your child is nonverbal or cannot communicate due to the high stress of what is going on at school. This will afford you, the parent, a firsthand look at the classroom culture, your child’s demeanor in class, and how your child is treated by the teacher and by peers.
CLOSING THOUGHTS:
I urge you, family members and guardians, to let your kids know it’s okay to speak up if someone is hurting them or treating them unfairly. Keep in mind that one conversation may not be enough. Keep talking. Keep the line of communication as open as you can. By noticing a shift in your child’s behavior, asking questions and even dropping in at your child’s school, you are going a long way toward helping your child understand that they are valued and deserve as much respect as their peers. You are also letting staff at school know that you are paying attention.
Today, ableism is more well known, and by recognizing it, you can help stop it.
Trust me, it means the world to us.
“I want to encourage kids to speak up, to tell their stories. That is the only way people will know what we have to go through. Believe in yourself. Someone once told me being different isn’t bad – different is just different!” – Lauren Potter
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Tonia is a 30-something woman passionate about bridging the gap between disabled adults and parents of disabled children. She is also passionate about seeing a respectful representation of disability in the media. She blogs at Tonia Says, and you can best reach her at Tonia Says on Facebook.
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I appreciated reading this article as a wife of a man with Cerebral Palsy who has always used a wheelchair. When my hubby was in elementary school, he also faced a lot of “able-ism.” For instance, there was a “line of demarkation” on the playground that he COULD NOT CROSS in fear that he would be hurt. He participated in sports but was also given meaningless praise and the “everyone’s a winner” line that really annoyed him because he knew it wasn’t true and he actually wanted the chance to compete like any other kid. When he had friends over, his mom would let them ride in his wheelchair to help them understand his perspective, but in some ways, it backfired because the attention was drawn more to his wheelchair than on him and before long, kids were ONLY interested in him because of his chair.
Now he is my wonderful husband and father of a 3 1/2 year old girl and a second baby on the way. We love to take our daughter out to a certain playground that has ramps and adaptive equipment, because that means Daddy gets to play with his little girl on the playground! Also, when I was a classroom teacher, I remember watching classroom aides help a little girl with Cerebral Palsy so that she could actually play on the playground instead of missing out — a huge improvement from my husband’s childhood days. Of course, able-ism still exists, but it’s so refreshing to see at least some progress from my hubby’s childhood!
My favorite recent memory is when we took our daughter to her swim lesson last Sunday. Our daughter proudly turned around and pointed us both out to another child in the class and bragged that her parents were there watching her. My husband is SO amazing! And then when my hubby was starting to receive the usual “stupid stares” as I call them, our daughter climbed right up into his lap to sit. Hahahahaha, that showed them. 🙂 I love my family so much and love how my husband has been such a wonderful father, too. He is the BEST!!!!!!
Christina,
I am definitely encouraged to hear that things have improved since your husband’s day and that you are all happy with a great little girl. Thank you for reading! Really appreciate it!
Tonia —
I’m sitting here trying not to get emotional about this but ohmygoodness you’ve done it again. Your words are so, so important and I am so grateful to Ellen for sharing them with us. I wish I could share this post with the whole entire world.
First, I want to commend your bravery for sharing these stories with us. They’re painful to share and they’re painful to read and discuss because I think sometimes it’s just so much easier to pay attention to the feel-good stories about people with disabilities. Sometimes it seems as though stories like these slip away unnoticed because people don’t want to face this kind of pain, but they’re so important to share, and they’re so important to read.
I wish I could say that I was shocked by your words. I wish I could say that I’m in disbelief at the treatment you received. I read the part about your spelling list – “Tonia is different” – and it cut me to the core, but I wasn’t altogether surprised.
As another person with CP, your words were validating for me. I’m so sorry you had to go through this, but I’m so glad you had the courage to share it. My elementary school experiences were mixed — I had some beautiful, amazing experiences with amazing friends and classmates who understood and accepted every part of me. But I had painful moments, too…teachers who refused to read my work because they assumed that “CP” was synonymous with “incapable,” who made me sit out of gym class and forbade my classmates to speak to me…adaptive PE teachers who humiliated me in front of my peers and spoke to me as if I was “less than.”
But I can tell you this. We can use these experiences to make the world maybe just a little bit more accepting, a little bit more beautiful than it was before.
I was volunteering as a classroom tutor in a third classroom a few years ago and there was a little boy with a disability in the class. The teacher asked me to correct some spelling tests, and when I got to his, she said, “Oh, don’t worry about that one. He’s not part of our class.” I was confused, at first, by her statement. His name was written clearly on one of the desks…he sat alongside his classmates for their lessons, received the same worksheets that they did. And then it struck me, all at once… this little boy – he’s just like I was. I had a teacher who didn’t read my work at first either, who suggested to my mom after I fell and scraped my elbows on the playground that I should be sent back to kindergarten, because a girl with brain damage couldn’t possibly keep up with same-age peers. I am so thankful that my mom had the courage to fight for me, that she refused to hold me back and that she told this teacher to open her eyes and see ME, not my diagnosis.
So in light of my own pain, I took an extra moment and disregarded his teacher’s words. I looked at his spelling test and I circled two words that he spelled correctly and tilted the test toward his teacher.
“Look at this,” I said, and I watched as shock crossed her face.
“Wow,” she said. “I didn’t know he could spell!”
I know that this moment wasn’t enough to take away all of the injustice in our world today, but I like to think that maybe….maybe because of the pain that I experienced so many years ago, this little boy is a little more a part of his class.
And Tonia…I don’t know who this post is going to reach, but maybe it will be read by a teacher who has a student with a disability and who will now address this child by her given name instead of a degrading nickname. Or maybe it will be read by a parent who will discover, now that they know the right questions to ask, that their son or daughter with a disability, is suffering, and you will have given them the opportunity to improve the situation for their child. But I know this for sure: your post has reached ME, and I can’t thank you enough for showing me, once again, that I am not alone. xo
Thank you, Tonia and Ellen. Everybody needs to read this.
K, Thank you so much for such a thoughtful comment. I always appreciate hearing from you.
This one, in particular, isn’t difficult to share. I actually found it really cathartic to be able to articulate the connection between my behavior and what motivated it. At 9, that wasn’t something I was able to do, because I wasn’t emotionally mature enough and didn’t have the vocabulary.
I had a feeling you would not be surprised – and I’m sorry about that – because I know it means you encountered some of the same narrow mindedness that I did.
I hate that you experienced such hurtful treatment at the hands of teachers. You deserved to have your work read, and you deserved to be spoken to with respect and not humiliated.
I think you definitely made a difference in the life of that little boy, because you treated him with dignity, and saw him as a part of the class that he WAS. It breaks my heart that his teacher expected so very little of him and didn’t even look at his papers or know he had the ability to spell. I really do hope that that experience opened his teacher’s eyes to start treating him with the respect he deserved as a human being.
I am so glad this post reached YOU, K. And if it ONLY reaches you, it will have been worth it. One person feeling less alone is always worth it.
This is an incredibly helpful list for parents and I have to say I was floored by the treatment you received during your time in 4th grade. Many ableist behaviors are quite subtle and difficult for parents to fully understand. Your writing is making a big difference. Thank you!
Hi Mary Evelyn,
Thank you so much! I am so glad to know you are finding these posts helpful! The things I encountered – I guess WERE subtle. Though at the time the difference in treatment between myself and my peers felt glaringly obvious and unfair. I hope posts like this are clear enough in pointing out how being singled out (however subtlely) can really hurt a child. You’re so welcome!
Thank you so much for this post. I am the mommy of a little boy with a chromosome disorder. At 5 1/2 he is certainly behind his peers in many ways. He will be starting Kindergarten next year and I am a bundle of nerves.
I struggle with making sure my little guy gets the support he needs without underestimating his abilities. For example he is in a swim class, he is in a class with kids younger than him and gets lots of one on one instruction but we want him to be able to have that experience. He loves the water! We have him in piano lessons with a teacher who adjusts her lessons for his skill levels and builds on his strengths. I truly hope we are doing the right things and not sending him the message he can’t do it.
His preschool is wonderful and he is in an integrated classroom with “typical” and “special needs” children and I think the environment is great for all the children. There are two teachers and several aides and at times I have been in the classroom all the children benefit from the extra helpers. Next year when he starts Kindergarten he will have an educational aide assigned to him. There are certain things that make it necessary for him to have the extra support (toileting, and feeding to name a couple). I have so many concerns about making sure this person is the right fit for him to help him in the areas he needs and challenging him toward independence vs. babying him.
You have given me a lot to think about.
Olivia,
It sounds like you are giving your son a lot of great experiences, while making sure they are not beyond his abilities. I’m totally aware, having grown up with a disability, that I didn’t know where my limits were either, in terms of what was realistic for my parents to push me in and what was not. Sometimes, you just have to fly by the seat of your pants a little, which I’m sure you’re aware of.
I would say, if possible, get his feedback on these activities from time to time (if he is nonverbal, watch for nonverbal cues.) Does he seem happy in swim lessons? In piano? When you ask him “Do you like this?” what does he say/do? Every once in a while make a point to ask him about those things and see what his reaction is. That way, he can feel a part of the decision making and feel empowered.
And I would say, trust your gut as your child’s mother, with regard to the aide. Don’t be afraid to ask questions in his IEP meeting for example, to find out whatever it is you are wondering about the aide. I’d also say if you get the chance ever to eventually observe them together, even for a few minutes, do that. Watch how your child reacts to this person and this person’s demeanor with him. It’s my opinion that a child’s safety and security is first and foremost. We are at a higher risk for being mistreated, so keeping an eye out isn’t “overprotective” in my opinion, just smart.
Thank so much for your comment! I loved hearing from you!
Thank you for sharing your story. I have 2 sons with Down syndrome. Their Special Education teacher is amazing, as she has a son with ASD. Peter’s first year there a student made fun of him bc we left in a stroller. We adopted him from Ukraine at 5 and he didn’t walk until 7. He walked a lot in school with assistance but to and from the car the stroller was easier. I actually turned back and had a chat with the probably 3rd grader and with Peter’s teacher the next day. She immediately designed a program called Different Abilities, and during that week every student came to the gym and did tasks like assembling Legos with large leather work gloves on, tried to assemble simple wood puzzles with hazed over goggles, navigate a wheelchair through cones and back and other similar tasks. It was great. She applied for a grant through the district and won it and used it for the program the following year.
Last year our local DS group was awarding a $1000 grant to a teacher/school etc. I forwarded the info to their teacher and she was all for it. She asked me what kind of idea would I like to see the money go to if we won. She mentioned a few things like sensory type stuff etc.
I told her I wanted a program that puts our kids with their typically developing peers in a small ratio like 1:1 or 1:2 and work next to them, with them, to see and learn that they are kids just like them. They might have some differences, but allowing students to work closely with them takes away that unease or awkwardness when they just stare at them from afar. I want our kids to be part of their general education classroom as an equal, not the kid that comes in a bit every day and then leaves or the kid that comes in and they all love and high five and think of him more as a classroom mascot.
They need to get to know them. See they are more alike than different. My other son started K this year and I taught him to read(sight words and homemade books I made using sight words)over the summer. His ppcd teacher recommended only specials with his gen Ed class but we fought. He spends half his day in the general Ed classroom and gets his core learning in life skills. I told her I taught him to read so he’s had spelling tests every week since week one and gets mostly 95-100s. Most teachers think if they are non verbal they are less intelligent.
There are 8 children in SpeEd this year and we had an astounding 59 4th graders apply to the Buddy Program we used the grant for. Only 4th graders can do it. They had to apply, write an essay and then interview and tell why they wanted to do this. After Christmas the teacher ordered several more kits for the program so that the others could be Jr Buddies.
I think acceptance needs to be taught when they are this young and not yet formed discriminatory opinions. The buddy program our district has doesn’t start until middle school and by then cliques have formed, there’s cool kids, not cool kids and ‘those’ kids. I hope this becomes a district wide program. Every tiny step or victory gets us closer and closer.
Julie,
I am so glad to hear that your sons have a great teacher! That always makes a huge difference. While I don’t think disability simulation is the answer in terms of acceptance (as it fosters an attitude of pity) I do agree that acceptance is absolutely important to model and teach, and the sooner the better. Thanks for reading!