How IEP’s and The Public School System Failed Me as a Student With a Disability and How we can Make a Change
As a young adult with a physical disability, I often reflect on my childhood. The strongest memories of my younger years are of being in school and being reminded of how damaging those years were for my psyche and they all revolve around one fundamental thing: an IEP (Individualized Education Plan).
By law, any child attending school with a disability in the public school system, depending on certain circumstances, is eligible for an IEP. The goal of an IEP is to provide services and accommodations to students with disabilities so they can thrive academically.
After years of thought on the subject, I’ve discovered that it seems as though there is a detrimental grey area within IEPs that students who have strictly physical disabilities in the Illinois Public School System get caught in.
As a former student who meets that description, I can attest to the harmful effects that the grey area had not only on my emotional health, but my academic success. Your first thought might be that what I’m saying may sound a little counterintuitive. Aren’t IEPs supposed to ensure and support a student’s academic success? Yes, you’re correct, they are SUPPOSED to.
I have a neuromuscular disease called Spinal Muscular Atrophy (SMA) that strictly effects my physical mobility and has zero effect on my cognitive ability. I started receiving IEP services when I entered the public school system during kindergarten, until the end of my senior year of high school… and I hated every second of it. The services I received via my IEP were mostly mobility related. Through my IEP, some of the services I received were: OT and PT services, aides who would assist me with toileting, adjustments made in the classroom to make it more accessible (an accessible desk or utensils), and more time on assignments.
You may infer that my IEP met all my needs and the individuals conducting my IEP did their job successfully. This is unfortunately not the case. I have so many stories that can bring light to some of the several instances that caused me emotional turmoil at the hands of individuals involved in my IEP throughout my academic career in district ***, some of which I wrote about in college and presented at autoethnography conference in Texas with my mentor.
The most memorable story I can think of was when I was “caught” having a friend assist me use the bathroom during my senior year of high school. For years I had aides that would assist me when I had to use the pot. Sounds pretty standard for a student with a disability, right? Nothing to damage the psyche there, until you bring the potty seat into the picture. I was forced to use a big, ugly, self-esteem damaging potty seat for years when I needed to pop a squat at school despite my obvious distaste... or you might say hatred for the thing. In high school, I decided to take it upon myself to retire the potty seat for good by simply lying with the grin of a evil genius mastermind as I told the aides I wasn’t going to use the bathroom at school my first day as a eager and motivated freshman. They looked confused but didn’t question it. What they didn’t know (until I was caught) was that my friends would help me use the pot during the time we changed classes or when we ditched class. This preserved my fragile 14-17 your old psyche from the embarrassment of using a potty seat I didn’t need while simultaneously giving me the courtesy of having some autonomy on having power to decide who gets to see my naked body. When I was caught, the nurse dialed my mom faster then I dial the Dominos when I’m hangry. They decided this incident called for an emergency IEP meeting, oh joy. After receiving a call slip to meet my mom and others at the meeting, I cringed as I approached the door where my bathroom needs where going to be discussed in a room full of people I didn’t have the largest affinity for. To my surprise, my German teacher was there — typically one teacher is present at a regular IEP meeting to discuss how I’m doing in the classroom, which obviously was not relevant in this case. As I was scolded for using the bathroom on my own accord I suddenly burst into a fit of tears and frustration. “IT’S MY BODY, I SHOULD DECIDE WHO CAN SEE IT.” At this point, I’ve been done with their shit for years and I didn’t care to be calm and composed Alex, like I usually am, even in aversive situations. My German teacher looked mortified, as I’m sure she was pondering why she was invited to this meeting. They discussed how I was going to be 18 soon, so after that they would no longer be liable if something did happen to me when I was using the facilities. Still, they wanted me to choose an aide to assist me for their records aka to cover their ass. I refused. After that, they kind of gave up on following me with a magnifying glass. Better late then never, I suppose (I graduated 6 months later). I also learned something: what a fish in a fish tank feels like.
With that instance in mind, at home, I was treated like any other child. I was grounded. I had to do chores. I played with my friends (tying a jump rope to my wheelchair and pulling my friends on roller blades was a favorite childhood activity). At school, I was treated as though my disability defined me. I was watched and felt like I was being grouped in with the Special Education students despite not being in Special Ed classes. You can imagine how this would confuse and frustrate a child — going from being treated like everyone else at home, to being treated like you’re everything but a normal child at school.
Here’s how most IEP meetings went down (aside from the final teary fit one):
During those meetings sat a very bright young girl, full of life, who happened to be in a wheelchair. During the meetings her face would beat red with frustration and confusion. Why wasn’t anyone listening to her or acknowledging she’s a human with feelings? Doesn’t she know her needs the best out of everyone, especially strangers who hardly knew her? As she left those meetings, many times, tears would roll down her face. She would be consumed by thoughts of what rebellious act she would have to conduct next in order for them to realize she was just the same as everyone else. She would skip class, lie, and skip school, making academics her last priority. Her academic success came second to her overwhelming frustration of needing to fit in and to be recognized as ALEX, a great writer who is smart and independent — not Alex in the wheelchair who we need to watch her every move. Every day when she entered the school doors, she felt suffocated. Her parents advocated tirelessly on her behalf until high school when she became her own advocate.
I was this girl.
I will also say that my teachers were the only ones who made me feel like a normal student and that did help counteract all the BS the IEP people gave me.
IEP’s were enacted into the IDEA (Individuals with Disabilities Education Act) to provide services mainly for individuals with cognitive/intellectual disabilities who need services to make sure they’re able to access and learn the same materials as their peers, providing accommodations if needed. IEP’s outline academic goals for students who struggle academically and what accommodations are appropriate. Most people with SMA, in particular, excel academically. Because of this, the majority of the IEP philosophy and goals did not apply to me at all.
This grey area isn’t district ***’s or anyone involved in my IEP’s fault. What is their fault is for not using their obvious lack of common sense to tailor the IEP to MY needs and their lack of empathy. I understand liability and certain rules but they never tried to work with me or put themselves in my shoes. They crushed my spirit that wasn’t regained until I attended college at SIU were I was finally free. SIU was the true definition of a breathe of fresh air, no thanks to them. On the contrary, my mother was advised to have me attend community college despite my desire and ability to go to a four year university. I graduated with a B.S in Rehabilitation Services no thanks to them.
It wasn’t until my mentor who was a doc student at the time expressed interest in my life and disability that I really dug deep into my past and how the public school system had failed me. We both teared up one night in my apartment as I told her how I never realized my full academic potential until college because of how suppressed I was in the public school system.
Because of the things I went through as a child, I came up with a resolution for the grey area myself and so many others get caught in as a student who strictly needs mobility accommodations. I propose a new piece of legislation that public schools would have to follow for students who strictly have physical disabilities: an IMP (Individualized Mobility Plan).
This plan would outline the required mobility aides a student would need to thrive in an academic environment. This would ensure that the individuals conducting the IMP are aware you need help with mobility and to not make the mistake of grouping you into the special education category, like I often felt.
I hope we can talk about these issues so that, if supported, a law like this can be enacted into the IDEA so that students with physical disabilities don’t have to go through the same things I did. All good changes always start with one thing: a conversation.
To check out the Love Your Genes Shop click here