“You’re so strong! How do you do it?”
“I couldn’t live with what you have.”
I’ve heard variations of these things in relation to disability and chronic illness for as long as I can remember. I don’t really take offense, because I’ve come to accept them as a sort of natural reaction. They’re usually uttered by people who’ve never lived with disability or an incurable illness whose exposure to disabled folks were through second, third, or fourth-hand stories. They usually know nothing more about those of us with any form of disability beyond a sense of surprised wonder at living normal lives.
Yes, these sentiments get old, but I’ve learned to see those reactions as a comment on the Single Story. What’s that? In brief, the Single Story refers to when you hear about a group of people from one frame of reference. The below video explains it perfectly, though she doesn’t mention disability.
When it comes to disability, that story usually encompasses three things:
- Impossible odds
- Inspiration coming from seeing someone with a disability doing ordinary things (see: inspiration porn)
Usually, that story involves an acquired physical disability.
However, invisible disability occasionally takes the spotlight. In these cases, they are usually exclusively a. learning disability and b. children. Adults with invisible disabilities are erased, especially in the cases of learning or developmental disability. Chronic illness is rarely included in the disability category, even though it is the leading cause of disability in the United States.
Why does this matter?
On a practical level, this influences service availability. For instance, when I went to get reevaluated for learning disabilities before enrolling in college, I had to hunt for someone who tested adults. There were plenty of neuropsychologists who worked with children, but relatively few who focus on adults. There was also little to no help available to help me fund the testing. While I was able to afford the extra debt, most of the folks I go to school with now cannot afford it, even though they may need the extra help.
Though parents whose kids go to uncooperative school districts have to pay the testing costs out of pocket, there are still many cases where the district will cover the expense. There’s always the option to contest the district’s denial as well. What happens, though, to those children who slip through the cracks? They become adults who must struggle with these additional challenges without needed help, which increases their risk of poverty and criminality. If you can’t hold down or even get legal work, what choices are left?
Social interaction tends to get far more difficult, as well. If you’re surrounded by people who don’t understand invisible disability or illness, continuing to hide the challenges you face may be the only way to keep a job or maintain a social life. Even then, many symptoms are impossible to hide forever, which may then tarnish reputations and destroy relationships. While many folks live in understanding environments, that’s not the case for everyone.
Race, Gender, Class
For a long time, the narrative was that only boys could be dyslexic or autistic. Thankfully, that has changed over the years, though there are still many girls and women who are missing needed help. Unfortunately, most of the literature and promotional material is still aimed at white, mid-upper class families. Neurodivergence does not discriminate, and all children should get the chance to reach for their dreams, even if they do learn differently.
Students of color are still more often misdiagnosed than white children. This could be due to unconscious, internalized bias by adults who grew up in different environments than they did. The majority of American teachers are white, and from middle class backgrounds. That isn’t inherently bad, but it does present a gap between teacher and students of color from lower income families. As humans, teachers rely upon their learned experiences in addition to their training, and a child acting out because of a rocky home life could look very much like learning or behavioral disability. Over 80% of children in special education are referred by teachers who know they need help, but my have limited recourse of what they can do to help.
This is often how struggling kids who are neurotypical may end up misdiagnosed and put into a program that won’t help them. When a child is coping with the effects of racism and/or living in poverty, concentration, behavior, and grades will naturally suffer.
The flip side of that coin is when the behavior is all that’s addressed. Undiagnosed autistic meltdowns can look a lot like intentional tantrums, and frustration over being unable to grasp material can look like anger to the untrained eye. Being sent to a psychologist for unrecognized learning disabilities or disciplined for something they can’t help will not help a struggling student succeed.
In these cases, since these kids don’t match the single disability story told, they’re subjected to unfair treatment. However, they also fall prey to the single story told about race, gender, and class.
School to Prison Pipeline
Students of color, particularly black students, and disabled students are far more likely to end up with undeserved legal punishments than white, able-bodied, and neurotypical students.
Let’s take the 2011-2012 school year for example. That year black students made up 18% of the preschool population, yet 48% of preschoolers subjected to out of school suspension. If black students didn’t even represent 20% of the population, how could they make up almost half of young children in out of school suspension? At that age, kids are still figuring out social rules and emotional regulation. If that generation was that “bad”, why didn’t white students make up a larger percentage of students subjected to the same punishment?
Disability also plays a role. While I couldn’t find reliable statistics about how many disabled students of color were subjected to legal action, I did find that students enrolled with IDEA made up a quarter of student arrests or law enforcement referrals, despite the fact they only made up 12% of the student population. This tells me that instead of relying on the highly individualized needs of kids with disabilities, school authorities were relying on the stereotypes. While this may have strong roots in understaffing and inadequate training, it’s still a powerful result of the single disability story.
One of the more subtle, but just as dangerous, effects is also the learned idea that those with disabilities are less smart than their non-disabled peers. I fell victim to this one for many years. I’d spent years accepting the fact that I couldn’t do well in an academic setting, or find work that paid more than minimum wage. As I grew into adulthood, I learned otherwise, but those toxic ideas still hit me on occasion.
Tell Your Story – And Listen to Others
One way to change this is to tell your story, if you’re so inclined. The more people who share their stories, the more obvious it becomes that there isn’t just one way to have a disability or to be neurodivergent. We’re not all the same, and we’re each influenced by various societal forces.
However, the more important action is to listen to what others have gone through. The only way we can get any idea of what anyone else goes through is to listen to those who are willing to share their experiences. From there, we can look for patterns, and finally create meaningful change.
There is no single disability story, and there never has been.
Jordan, Kathy-Anne. “Discourses of Difference and the Overrepresentation of Black Students in Special Education.” Journal of African American History, vol. 90, no. 1/2, Winter/Spring, pp. 128-149. EBSCOhost, mctproxy.mnpals.net/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=aph&AN=17229271&site=ehost-live.
“Data Summaries.” Data Summaries. US Department of Education, n.d. Web. 28 Mar. 2017.
“Chronic Disease Prevention and Health Promotion.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, n.d. Web. 26 May 2017.