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I often hear about how disabled people should not complain about the things we often have to complain about "because the ADA is passed."
This is not only problematic because not everywhere complies with the ADA but because often, disabled people must deal with not even having access to our most basic human needs on a daily basis.
This post will explore how limited access to emotional support, food, water and restrooms can impact disabled lives.
ALL THE ATTENTION:
I remember being
four years old, hospitalized, and sitting across the room from my parent. There may as well have been a gulf of space between us.
"Do you want to eat in bed or in the high chair?"
"Bed," I said, too weak to even think about being lifted and then spending a whole meal sitting up.
There is this dangerous idea that
typical siblings suffer emotionally
because disabled siblings get "all the attention."
Just because a grownup existed in my vicinity when I was four and hospitalized, it does not mean that I had emotional support. An adult in the room during hospitalization does not equate emotional support. (I took more comfort from my Follow That Bird audio tape, and from seeing a little boy my age get pulled past my door in a red wagon daily than I did from any grownups.)
We need to relinquish this idea that giving disabled kids a grownup's physical presence during medical interventions automatically equals giving us emotional support or spoiling us with "all the attention." The implication being that the disabled child is obviously getting emotional support, when that is often not the case. Getting our medical needs seen to is basic. But so is getting our emotional needs seen to.
That is often the piece that's missing.
HUNGER AND TRAUMA:
"You're having surgery tomorrow morning, so no snack tonight."
For a kid who had
multiple surgeries throughout my childhood, these words always felt like salt in a wound.
No food from after dinner (around 6 PM) into the next day. No breakfast in the morning. Then surgery. And post surgery? I was absolutely never hungry. My body was in survival mode, literally.
Eating was a chore.
So, hearing that I wouldn't get a snack that night? (Or any night before any surgery?) Trauma and hunger became linked. I had to endure knowing my siblings were eating snacks. Would get breakfast in the morning. While I didn't. While I couldn't.
I was eight years old.
My access wasn't blocked by traditional barriers, but by the medical regulations of the time.
A barrier is still a barrier.
NO TIME, NO ACCESS:
I still remember the fear. The shame. The humiliation.
There was never enough time in the morning to do everything I needed, and to get to the bus on time. Something had to give. That day, it was my last-minute trip to the bathroom before I went to school.
I managed to hold it on the bus, raced to the school bathroom as fast as possible and I just...didn't make it.
I was mortified. Frozen with terror. I felt flushed and sweaty, then clammy.
I had no idea what was going on with my body. No words for the fact that I was, in fact, experiencing my first panic attack.
Nobody even knew I was at school. I hadn't gone to my classroom yet, I'd come straight to the bathroom. And I felt like I couldn't get out. I couldn't face anyone. But I was equally fearful of having my peers discover me in such a state, and that, finally, pushed me forward.
Realizing finally I had no other choice, I pulled my soiled clothes back on. I tried and failed to leave the stall for the better part of 45 minutes. When I was finally out of the stall, I tried and failed to approach
my classroom door. Time and time and time again.
Finally, I just did it.
Forced myself to walk in there, and right up to my teacher. I whispered to her:
"Come out in the hall."
My teacher stunned me by actually listening. By following me out to the hall.
I couldn't even look at her as I admitted softly,
"I need new pants."
She walked me to the office so I could call home, commenting,
"You're not as speedy as usual."
I couldn't answer. I was trying not to cry. I was thinking,
"I'm nine! I'm too old to have accidents. I've never had this kind of accident ever."
PEE MATH:
I didn't know then that kids and adults with disabilities face this issue daily, and that when our Pee Math (defined by Vilissa Thompson as
calculating how long we can be out and about...before we may need a bathroom break) fails, the consequences are gross and humiliating.
Generally, in elementary school, I didn't need to worry about bathroom access because we were allowed to go at scheduled times. Bathroom breaks were built into our day. My first year of middle school, I had an aide. We did not get along whatsoever. The next year, I was so relieved to be without her that I didn't immediately realize the single problem I would have:
There was now no one to hold open the staff bathroom door, which was right by the cafeteria, and which I had used regularly the previous year, with the help of a friend's aide.
The regular bathrooms weren't an option as we only had two minutes of passing time. (I had perhaps, five, due to my IEP.) Still, this was not long enough for me to use the restroom. I had to factor in the time it took for me to walk there with my crutches, to wait for a stall to open up with the long lines in the girls bathroom, and assume none of them were going to want to hang out and smoke in the accessible stall...which, they always did.
Long story short, I was twelve when I started really factoring Pee Math into my every day life.
YEARS WITHOUT ACCESS:
As
Alice Wong shared in a memorable tweet thread, I also began limiting my food and fluid intake...but I began years earlier in seventh grade. I didn't get hot lunch, because I didn't have an aide to help me with the tray. And if I didn't bring cold lunch, then I just didn't eat.
I definitely knew better than to drink.
This continued into high school.
By now, I was rarely eating breakfast in an effort to save time. I had to be up at 5:30 AM to catch my bus just after 7 AM as it was. At school, sometimes I'd have packed my own cold lunch, but not usually. I still wasn't drinking anything at all.
Still, sometimes, no matter how hard I tried to limit my fluid intake, the worst happened.
I was 14 and just arriving home from school after having held it for an interminably long time. At school. On the bus. On the front step waiting for my sister to unlock the door.
Having CP meant that I always struggled with the intricacies of holding my pee. I could not
just isolate the muscles needed to keep my pee where it belonged. Everything from the waist down would tense, too, in solidarity. (Which basically meant I had two options: stand still and hold it, or concentrate hard enough to move and pee everywhere.)
Well...I couldn't just stand on the front steps all day.
I barely made it inside when my bladder let go as I went to sit down on the steps to remove my shoes. Instead, I found myself awkwardly suspending my body with the help of the railing, angling myself toward the linoleum entry way to spare my parents' carpet.
I hurried to wipe up with a towel, changed my clothes and did a load of laundry (the towel and my wet clothes.) I was so embarrassed and determined that no one would ever know.
They didn't.
UNFORESEEN SIDE-EFFECTS:
It should seem obvious that depriving oneself of food and hydration during the day would result in some issues. Mine weren't exactly what I'd imagined:
I came home every day from school parched and super hungry. At 2:30 in the afternoon, and I often had nothing to eat or drink for more than 12 hours before that. Despite being up for nine hours, and going to school for a full day.
The thing was, the kitchen at home wasn't accessible either.
Years earlier, as a child, I'd been caught making a peanut butter sandwich on the floor, without a plate.
Our kitchen was such that there were counters for me to hold onto around most of the room. So, it was theoretically possible for me to move bread, peanut butter and a knife
almost to the table. But the gap between the counter and the table was too wide for me to hang onto the counter and reach my chair at the table at the same time.
I suppose I could have bothered with a plate, but I didn't want expend the extra energy getting a plate and moving it to the floor just for a sandwich. I was hungry. Standing at the counter meant using one hand to keep my balance. There was no way I could spread peanut butter with one hand.
A family member remarked on the sight of me, hands and knees on the kitchen floor, peanut buttering my bread:
Them: [disgusted]: What are you doing?
Me: ...Making a sandwich.
Them: [still disgusted]: You can't make a sandwich on the floor. There are germs.
Me: I'm almost done, and it hasn't been on the floor for long.
From then on, I made sure that no one caught me at the fridge.
After a full day of school, and hours without food or anything to drink, I relished the time no one was home, so I could finally eat and drink without being mocked or thought of as disgusting. I drank milk with abandon and ate bologna, Kraft singles and mini cheeses. If there was an open can of frosting, I found a spoon and finished it off. I ate what I could easily access from floor level cabinets: dry Ramen noodles, dry hot chocolate mix or dry oatmeal.
We always had supper. I always made sure to eat it.
As I grew older - junior and senior years of high school - I coped by buying cookie dough and fudge we sold as part of choir fundraisers. I kept it in the old refrigerator in the laundry room, just outside our bedroom. When I studied, I often had a container of fudge and a spoon beside me.
In college, the bathroom situation was somewhat better, but still problematic. And I was still living at home until I was 20. By then, I'd just learned to avoid going to the kitchen at all. There were frozen waffles in the downstairs fridge, and pop to drink. I'd hang out in our room at eat the waffles (still frozen) rather than taking the risk of going upstairs and asking for help carrying anything to the table (which often turned into ableist rants about why I wasn't stretching or that I needed to do more physical therapy.)
ECHOES OF THE PAST:
It wasn't until the last year or so that Tara mentioned to me,
"Maybe you should get a plate when you eat lunch. Watch something you like on TV. Treat yourself gently."
Like a true trauma-survivor, I thought,
"Well, that seems pretty excessive."
Until I realized why Tara was saying this. It was because, even though I'd been living in accessible housing for over a decade (and had an accessible kitchen) I still found myself eating lunch in front of the propped open refrigerator door - one item at a time.
 |
| [Image: I sent Tara this selfie of me around 2017. I'm smiling, in front of the open refrigerator door.] |
(I'd also spectacularly
choked on a carrot, while being pretty checked out while I was eating. The incident scared me.)
"It's like you're recreating your own food insecurity," Tara pointed out gently.
(Mind. Blown. Holy God, was I doing that?)
So, one day in September of 2019, I tried Tara's suggestion.
I got a plate. Put all the food on it. Turned on a show I liked and ate the food.
And it was okay.
Now, I can almost do it without thinking. (Though, occasionally, I'll catch myself getting ready to eat at the fridge if I'm particularly hungry.)
OUR BODIES REMEMBER:
I share these things because I don't think they're discussed enough.
I never "went hungry" in the traditional way (because to be clear, there was always food in our home growing up.) But access issues both at school and at home complicated my ability to eat, drink, and use the bathroom without consequence.
Even though I live where it's accessible now, I still had to implement Pee Math when I went out (pre-quarantine.) I had to be sure I brought enough of what I need for the restroom, and when in doubt at all, I packed food and brought it, too, even if we're only due to be gone a few hours. (We've gotten stranded for three hours without a ride before, and had to spend most of the day somewhere away from food. So, we learned to pack accordingly.)
Accessing our own basic needs when disabled is a complicated thing.
It's time to shine a light on this topic, because it's not going away. Disabled kids, disabled teenagers, disabled adults, we all deserve to be able to access the most basic things in life.
HOW TO HELP:
- Don't assume that a disabled person is getting all the attention. Just because we may have a family member present for medical appointments does not mean we are necessarily being emotionally supported. Check in with us. Ask if there is anything we need.
- Make food and water readily available when possible. When not possible, offer assistance. If none of these are possible, don't judge the way a disabled person has to access food or water in an inaccessible space.
- When possible, don't be in a rush. This allows disabled people to be able to do what they need to do in the restroom before leaving their home.
- Inquire about accessibility before going to a new place. Ask specific questions related to the disabled person's access needs.
PANDEMIC FEELINGS - HEIGHTENED FOOD INSECURITY:
If you have a history of food insecurity and you've noticed an uptick in your symptoms since the pandemic, you are not alone.
I fell asleep imagining food.
And months into this thing, nothing makes me feel more safe, loved or secure than a box full of groceries.)
Adjusting to life without turkey, cheese, without store-bought bread and fresh fruit and vegetables has taken some getting used to. Overpriced online food, delivery fees, and changes in income can all contribute to the very real fear that those of us who have grown up without reliable access to food can relate to.
We are surviving - in large part, especially in the beginning - due to others' help. This is a part of disability culture. This is also a privilege - and one I am constantly aware of - because not every disabled person has access to people who can or will help them.
You're not alone in this pandemic, and in these feelings of heightened food insecurity. It seems a very usual response, in fact, due to the reality that we are all living through a massive trauma right now.
Hang in there.
And if all you can do is survive, know that that is pretty major. And that I am proud of you.
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