I’m not sure I can do it anymore. That’s how I’ve been feeling lately. After close to 30 years in the field of special education, I’m exhausted. Let me be clear, the fight, the movement, the advocacy on behalf of students still wakes me up every day and sometimes keeps me up at night. It’s the system and the way in which so many people have bought into it that has worn me down. Whether it’s giving advice to a parent about how to deal with a broken system or fighting a college over blatantly discriminatory practices, I sometimes pause mid-sentence to stew in the ridiculousness of it all.
I’ve been criticized for focusing too much on the paradigm and not enough on the pragmatics. Guilty. When a school asks that I come and present on the diagnostic criteria for autism or classroom strategies for their teachers’ proverbial tool belt, I want to stick a fork in my eye. So instead, I show up to put a fork in their head and continue to challenge how they think and not what to do. Our beliefs guide our actions.
If you haven’t noticed, I’ve been blogging more. This is for a variety of reasons. On one hand, my publicist for my book Taking Flight: The Guide to College for Diverse Learners and Non-Traditional Students thinks I’ll sell more books (yes that was a shameless plug). But altruistically, I feel like I have something to say and I feel like no one is saying it: The system is broken and we’d be best to burn it down and start over. The system was created from our biased and flawed beliefs and values about disability (or what’s “not normal”) in our society. So, I’m going to continue to blog on this topic because there’s enough conformist, colonialist mentality that will tell you how to be in compliance, how to beg for your rights, and what miraculous strategies will free you or your child from their disability. I’d prefer to try and free your mind from it.
Plessy v. Ferguson was the law that allowed the practice of separate but equal. Brown v. Board of Education struck it down. In most colleges, that’s where special education law courses start. And then, they try to enshrine the separate but unequal educational doctrine of special education; separate funding streams, separate classrooms, separate training for teachers, separate graduation requirements, separate licensure, separate access to services, separate expectations, separate schools, separate laws, separate exceptions. And students and families just spoon it up like slop, assuming if they conform to the system on the farm, they won’t face slaughter in the impending Spring.
But here we are almost 70 years later (feel free to skim until you get the point):
- Lower Graduation Rates: Students with disabilities graduate at a lower rate compared to their non-disabled peers. In 2021, the national graduation rate for students with disabilities was around 70%, compared to 85% for all students.
- Achievement Gaps: Students with disabilities consistently score lower on standardized tests in reading and math. These achievement gaps persist across grade levels, with less than 20% of students with disabilities scoring proficient on assessments like the National Assessment of Educational Progress (NAEP).
- Disproportionate Disciplinary Actions: Students with disabilities are more likely to face suspension, expulsion, or other forms of disciplinary action. Data shows that they are suspended at more than twice the rate of their non-disabled peers.
- Postsecondary Education Enrollment: Fewer students with disabilities pursue postsecondary education. Only 34% of students with disabilities enroll in a 2- or 4-year college within eight years of leaving high school, compared to 75% of their peers.
- Higher Rates of Violent Victimization: People with disabilities are significantly more likely to be victims of violent crime. In 2019, the rate of violent victimization (including rape, robbery, and assault) against persons with disabilities was 46.2 per 1,000 persons compared to 12.4 per 1,000 for those without disabilities.
- Disproportionate Rates of Abuse: Individuals with intellectual and developmental disabilities are particularly vulnerable to abuse, with research showing that they are 7 times more likely to experience sexual assault than the general population.
- Higher Incidence of Domestic Violence: People with disabilities are at an increased risk of intimate partner violence (IPV). Studies indicate that individuals with disabilities experience IPV at a rate 40% higher than those without disabilities.
- Underreporting of Crimes: Crimes against people with disabilities are often underreported, partly due to communication barriers, fear of retaliation, or dependence on the abuser for care. This can lead to gaps in protection and justice.
- Higher Poverty Rates: People with disabilities are more likely to live in poverty compared to those without disabilities. In 2022, 26% of working-age adults (ages 18-64) with disabilities lived in poverty, compared to 11% of those without disabilities.
- Lower Employment and Income: People with disabilities often face barriers to employment, resulting in lower income levels. According to 2021 data, only 19% of individuals with disabilities were employed, compared to 63% of those without disabilities, contributing to higher poverty rates.
- Gender Disparities: Women with disabilities experience even higher rates of poverty. Among working-age adults with disabilities, 29% of women lived in poverty compared to 23% of men.
- Impact of Disability Benefits: Although many individuals with disabilities receive disability benefits (e.g., Supplemental Security Income, Social Security Disability Insurance), these payments are often insufficient to lift them out of poverty. In 2022, the average monthly SSI payment was approximately $600, below the poverty line.
- Intersection with Race: People of color with disabilities are more likely to live in poverty than their white counterparts. For example, Black and Hispanic individuals with disabilities experience higher poverty rates compared to white individuals with disabilities.
Most people don’t realize that modern day special education is defined by cases fought in courts. In fact, in the special education law classes I taught, we’d go through the most important; Brown v. Board, Rachel v. Sacramento, Parc v. Commonwealth, Mills v. Board, Board of Education v. Rowley, Irving Independent School District v. Tatro, Honig v. Doe, Endrew F. v. Douglas County, Forest Grove School District v. T.A., etc etc etc. Indeed, the Individuals with Disabilities Education Act and its subsequent reauthorizations basically just outline how to be in compliance with these legal findings. It’s not the bible of how to educate students with disabilities, it’s the guide to not getting sued. Imagine getting healthcare that was created by lawsuits over previous deaths, rather than by principles of who got well. To this day, only two pieces of legislation provide guidance on working with students with disabilities in colleges and private schools, the Americans with Disabilities Act and Section 504. They say this, if you are qualified (i.e. admitted to their repressive and biased system through a discriminatory process that doesn’t discriminate against people with disabilities), they need to provide reasonable accommodations that are nothing more or less than minor adjustments to their educational practices. Beyond that, you’re screwed. Special education is not education, it’s the exceptions to it.
Special education is institutionalized Plessy v. Ferguson. Tracking in American Public Schools is alive and well. In England, at least they don’t try to hide it and at a minimum provide relevant education for the people they subjugate. But in America, the land of opportunity, we have decided that scores on assessments or diverse behavioral characteristics warrant a separate track for education, and it’s not that special because it’s not that effective, if not oftentimes the cause of the problem. Then we have the normal kids who apparently don’t need any of the strategies or accommodations that are reserved for the special kids. Then we create gift and talented (which lucky me got access to) where we do engaging activities that are fun and help develop problem solving and critical thinking skills, as if the special kids and regular kids wouldn’t benefit from that curriculum. Now we have phrases like twice exceptional because shocker here, people with disabilities can also be very smart.
I taught for three and a half years in the public school system as a special education teacher and an additional three as an educator in a residential psychiatric unit for children and teens. I served as an education professor for 7 years. And then, after holding my breath just long enough, I exhaled the sour breath of propagating and perpetuating a broken system. It’s impossible not to feel like you are contributing to the problem, when you are working for the system that is creating it. Mansfield Hall was literally a reaction to challenging and circumventing the system. It was my revenge on the world to illuminate the success of students with disabilities when given access to the proper system. And yet, the cost is prohibitive for most. When a professor at a big college in Vermont tried to trash talk us online for not providing free services (she is not an economics professor), my sentiment was simple, why isn’t your college with its billion dollar endowment providing it? Simple answer, because they don’t have to.
We spend so much time quibbling over diagnoses, compliance, strategies, services, and satisfying the system that I feel like we are missing the forest in this abundance of thorn trees. What are we fighting for? What is it that we are reaching for? What is equality in the face of diversity of ability? Of course, Mom-who-is-fighting-the-system, we have to fight the good fight. We have to fight for the scraps the educational system has thrown us, but in that fight, we also need to challenge the principles from which these scraps have been chewed.
While fighting for extra time on the SAT, let’s fight against the sickening discrimination the SAT represents for people with disabilities, low SES families, undereducated, and minority groups. While fighting for accommodations in the classroom, let’s fight against the discriminatory practices ingrained in the curriculum and pedagogy that NEED to be accommodated on behalf of all learners. When fighting against your private school’s right to reject your application based on disability, let’s fight against institutionalized discrimination based on one’s learning profile for everyone.
What we are fighting for is not the exceptions to the rules, but the rules that apply to everyone. We are not fighting for accommodations, we are fighting for an educational system that values all learners, regardless of their strengths or weaknesses or disabilities or deficits. We need to fight for one system where disability is no less disparate than red hair or no less surprising than crew cuts and blue eyes.
These discriminatory practices are built deep within the systems. People with disabilities did not have the opportunity to help create modern day education or workplace practices. They had to sue the bejeezers out of everyone to participate in the system and “level the playing field”, but they didn’t get to create the playing field or the rules of play. So the rules don’t apply to a world where disability is diversity and the exceptions are not best practice, they are the best that they will give us. The world we are fighting for isn’t about reforming the system, it’s about reforming the paradigm on which the system was built. No easy task, but also no other way to seek true equality.
As an example, in my previous blog, I talked about a mom wanting to get an OT eval for her son so he could use his laptop instead of handwriting. As I said, I thought that this was dumb, not the mom, she’s just doing the hands-out, “please sir may my son have his civil rights” hustle like any good mom would. But why? Because he has to practice handwriting for the SAT? But why? So he can use a keyboard like every working adult in the country on his SAT. But why? So he can get into a good college? But why? Because the SAT is important, even though it discriminates against ELL, disabilities, ethnicity, low income, first time college students, etc. But why? Because when he gets into that college he’ll have more opportunities, even if the dropout rate is almost three times higher for kids with disabilities. But why? So that he can finally get a job where he doesn’t have to handwrite. Fork in the eye.
I’ve got so much fight left. I don’t want to just fight the policies and practices anymore, I want to continue to fight the system. But I don’t want to fight it with people who believe conformity and compliance to the system will lead to the pathetic outcomes I shared before. I want to fight it with people who see the bigger fight. I want to fight it with people who are not just fighting for their child, but for every child. We must free our minds from the accommodations and exceptions they have carved out for our children and demand a system that works for everyone. We must believe that what benefits one, may benefit all. We must step out of the shadows of socially constructed disabilities that are a result of a broken system and not a broken person. I’ll fight. Will you?