Thursday, September 25, 2014
What it's like to live with a hidden disability
This guest post is from D, a woman I connected with on Facebook. She's 24 and in graduate school, working toward a master's in early childhood and special education. She has mild spastic and ataxic cerebral palsy, along with learning disabilities and ADHD. A self-described "bookworm," she's previously worked as an instructional assistant for elementary age students with special education needs. This is what she wanted to share.
Please explain what an invisible disability is.
Though I have cerebral palsy, which many do not coin as an invisible disability, how it impacts me is all hidden. Unless someone is staring at my hands they will not see my intention tremor. My gait is slightly off, but I do not utilize any form of a mobility aide, so most people do not notice it. From my experience, an invisible disability is exactly that: the effects of said disability are not seen by the eye. Within the hidden disability community, you might have a combination of visible and invisible disabilities. Invisible disabilities include mental health disorders, some forms of autism spectrum, learning disabilities and ADHD, some forms of vision impairments and some types of chronic illness and even some forms of a physical disability (as seen in my experience with cerebral palsy).
When did you first become aware of what it meant to have an invisible disability?
I was not aware that I had any disabilities until I was around nine years old. I remember going to my family and asking them why I couldn’t ride a bike. My disabilities cause sensory integration dysfunction, and my visual motor, proprioception and vestibular inputs are affected. My family explained, “This is just how you are."
I was included in traditional childhood activities alongside non-disabled peers, though I did receive extensive academic support and some social supports in middle school as my social deficits became more prominent. I can recall in high school having some difficulty walking down the hall. My muscles can sometimes become stiffer depending on the day, thereby sometimes making my cerebral palsy more noticeable. One girl who consistently bullied me asked, “Why do you walk with a stick up your butt?” I got so mad and told her I had cerebral palsy and for her to mind her own business. She had the audacity to tell me “No, you don’t.”
In became acutely aware of my social deficits and processing deficits in middle school. I was often frustrated with trying to keep organized and understand the concepts being taught. Often, if the pace in a class is too fast I will become anxious as my brain attempts to process all the information. At times, this can lead to meltdowns. Having an invisible disability makes it difficult to explain to others why you are taking so long to do things, how you can have such strong vocabulary but struggle with writing fluency (often my words are there but I struggle to get them on paper in an organized way), why you might not be the most coordinated and why you have to ask so many questions in class (I have to rely on my extremely high verbal skills to compensate for my very weak nonverbal skills).
In high school, I took some remedial classes deemed “special math.” Everyone knew if you took classes in the basement with the community school it meant you were “special.” I felt like I had a “disability stamp” on my forehead a lot of the time but couldn’t quite fit in with those who had visible disabilities since they often said, "You are not like us." Having an invisible disability for me has meant you don’t quite know where you fit, but you try your best to find your place.
What do you wish people knew about invisible disabilities?
People think that learning disabilities “go away” when you finish high school or college. I still have them. I will always have them. Also, since I am able to compensate for my learning disability, this leads to people again questioning the validity of the diagnoses. “How can you be so smart and have all these disabilities?” they ask. (I currently have a 4.0 GPA). I have had breakdowns, I am far from perfect. The reason I try so hard is because I know what I am capable of.
A big challenge for me personally now with finding employment is my inability to drive. I tried driving lessons with adaptive driving but unfortunately they were unable to accommodate for my neurological impairments—executive function, processing and visual perception. The paratransit in my home state is not reliable and often does not go to the locations that I am being moved to for work. I hear all the time from people “Just get your license!” Trust me, I would if I could.
I hear all the time from people “You are really smart for having a learning disability,” as if that is some sort of clause that means I shouldn’t be intelligent.
I hear from others with cerebral palsy “You don’t advocate correctly” as if there is only one way to advocate.
I hear professors that have told me I would never earn an A because “People like you just don’t earn those types of grades,” as if there is some reason I can’t possibly earn the same grades as others.
I hear people tell me “Just try harder” when I am repeatedly telling them I need help with this, or I admit to an inability to do a task. They act like I compensate for so much I should be able to do everything.
I hear people all the time telling me “You don’t act disabled” as if there is some sort of way we should act.
I hear the voice of someone I used to know with visible disabilities tell me I have "passing privilege," as if having to prove your identity is something of a privilege.
Sure, people with invisible disabilities don’t experience nearly as many physical accessibility concerns. The social justice accessibility, the value of our worth, the question of our validity in a diagnosis that may not fit in a diagnostic box: That is what truly makes our disabilities invisible.
I wish people would understand the complexities of disability. I wish people would understand how each individual has a unique profile with and without their disabilities. I wish people would understand when I ask for support I am not doing this to cop out. I am asking for support as a human being because I have rights. Disability rights are human rights.I am not asking for pity. I am not asking to be like everyone else either. I am asking for an opportunity to be myself, just as I am.
What's your best advice for parents of children with invisible disabilities?
In short: Listen to them, they know their brain best. Know that even if they are compensating with strategies, it doesn't mean they might not need help. Listen to them when they want to open up about school and life issues. Include them as much as possible in their IEP/504 meetings; give them an opportunity to try, with no judgments. All kids may (and let's face it, will) fail at something, but if we constantly protect "special kids" they develop learned helplessness.
Change the concept of "I can't teach/take care of my own child" guilt into "I care so much about my child that I am willing to do anything it takes to help them." Let them tell you what they need. A lot of times parents try to help and it only intensifies an issue that really wasn't one. It's most important to listen and let your kids be as independent as possible—yet supportive when they need you.
Posted by Ellen Seidman at 6:39 AM