Eureka and Middle School Math · UDL in Practice · Universal Design for Learning (UDL)

The invisibility of disability

This was a rough summer on some fronts.  As always, I work to live with an awareness of how incredibly blessed I am and how unbelievably fortunate a life I have been granted.  I have a job that brings me much joy, a house that I love to come home to and to be in, a daughter who is growing up into everything I could ever have asked for, my health and many material blessings.  With that said, this summer was a time when I experienced a taste of disability and the struggle, the drain, of having to explain and advocate, especially when that disability is fairly invisible.

I have had migraines since my late 20’s.  If there is one thing that has remained constant over the past 15+ years, it’s that the doctors don’t know much about dealing with migraines and haven’t learned much in this time.  For me, there is no real indication of why the migraines began (no concussion, no blow to the head); there is no true pattern or connection to weather or food or lifestyle choices.  Just debilitating, blinding pain and nausea that comes out of nowhere.  I am very lucky–until this past year, I was able to manage the migraines with an emergency medication that has no side effects and all migraines were heralded with a clear set of visual indicators, giving me time to take the emergency meds so I could function.

Until June of this year.  Over this past year, I had had some uptick in symptoms (more migraines in a shorter time, new symptoms), but June was when things really fell apart, starting with five migraines in less than three calendar days.  That’s when I called my doctor and caved–give me the daily meds to see if we can be more preventative, because my emergency meds are not up to the job at this point.

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And so began two months of chaos.  Trip to the emergency room because I sounded like I was having a stroke?  Check.  Not being able to drive each day until about noon because that’s how long it took for the evening meds to wear off and for me to be safe again?  Check.  Having to learn exactly when I could take my meds at night because taking them too early meant I couldn’t go up and down the stairs in my two-story house?  Check.  Having to go back and check my typed work every afternoon to make sure what I had typed in the morning was actually correct?  Check.

Even once we got the dosage down to a place where I stopped having stroke-like symptoms AND stopped having to wait until noon to drive, I didn’t stop having migraines.  A twelve-hour visual aura, even if I can see through it and can type and work, is still exhausting and interferes with my ability to do my work effectively.  Cue a second heavy-duty evening med and a second round of experimentation to determine when I could take which med.

And then school started.  I spent the last few weeks of the summer in a total panic about how I was going to return to school.  Yes, my meds were better.  Yes, I had a new specialist on board AND a wrap-around/weekly plan for support services.  Yes, the migraines were “dulled down” to a dull roar.  But what would happen when I was with kids, in meetings, with parents, on-demand, on-call?  What would happen when I was on a set schedule, not one where I could nap for a half-hour whenever I needed to sleep off a low-grade migraine?  Above all, how would I get what I needed when migraines are so internal and so private that, while they are disabling, they are also invisible to an external observer?

Getting the support I needed was an experience that gave me a huge amount of empathy and sympathy for parents who advocate for their students to get IEPs and 504 plans.  It made me do some hard thinking about the ways in which I forget to “see” my students, as much as possible, every day and every minute.  The hearing-impaired student is folding up his current work into a ball rather than working on it…have I considered how incredibly draining it is is to be struggling every minute of every day to decipher the noise around him and how he needs a break?  The student with anxiety is melting down at home rather than asking me to help him redo work…have I considered finding time to work with him one-on-one to build a relationship with him?

I know I have gotten better at asking questions before acting on assumptions with students (I might still make the assumption, but I might catch myself before I act on it).  I know I have fought, even with our current change in schedule that reduces our class length by 8 minutes every class, every day, to find time to connect with kids daily.  But I also know that so much of what interferes with any of us doing our “work,” whether it’s work for a job or work for the job of being a 7th grade student, is below the surface and invisible.  This summer and the start of this school year has been a time for me to reflect and remind myself of the importance of not making assumptions about what we know about ourselves, our colleagues, and our students.

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