Self-Advocacy and Invisible Disability

Last week my 11-year-old’s phone had a literal meltdown (the scent of battery acid was strong), so I took it to the Apple store to see what could be done.

It is normally a pleasure to go to the Apple store, the bastion, and symbol of elegant design (assume appropriate liberal guilt and justifications here). The store closest to my home is gorgeous, complete with clean lines, blonde wood everything, slick display tables, and two-story tall windows looking out over the front range of the Rocky Mountains. At the Genius Bar in the back, well-heeled help-seekers are seated at giant butcher block work tables on backless high-top stools.

Now, you can’t tell by looking, but I am a person with an invisible disability (see what I did there?). That means that at a glance, you’re more likely to assume I’m a yoga-toned suburban mom in search of a sound bath than a person in chronic pain with an unstable skeleton. My condition (EDS) limits my life in counter-intuitive ways–I can walk for miles, but I can’t stand still, and when I sit in a regular chair, my pelvis and ribs start to shift out of alignment from the weight of my torso. I’ve got a scant few minutes in a backless chair or bench, and on a high-top stool where my feet can’t ground me, the pain starts almost instantly.

So my body really didn’t belong in that Apple store.

Witness:

Minute five: I was waiting for the first of what would be three helpers. I was off the stool, leaning on my elbows to stretch out my spine and rib cage.

Minute 10: As the friendly helper ran his tests on my kid’s phone, I shifted and fidgeted. Touched my toes and reached for the sky. He didn’t comment, and neither did I.

Minute 20: He determined that the only solution was a new phone. That was the outcome I was hoping for, so I thanked him profusely, and he walked to the back to find a replacement phone.

Minute 27: I had taken to pacing because the movement can sometimes readjust my spine. I pet Lulu, a sweet French bulldog with a pink bow, seated at the work table next to mine. I wandered around until a new helper approached with the new phone. He was the set-up specialist (the help I also needed and appreciated).

Minute 37: The phone was updated and connected to the correct line. I was on the stool, off the stool. Stretching, twisting, bending, rolling my neck. Again, he didn’t comment, and neither did I.

Minute 42: I asked to purchase a screen protector (because my kid isn’t allowed to touch a phone without a screen protector) and waited for my third helper, the screen protector specialist, to come out. The neuropathy in my feet kicked in, and they started to feel heavy and thick, so I was unable to pace or stand anymore.

Minute 45: I chatted to the friendly screen protector helper while mentally rearranging my afternoon around having to take an extra pain pill and being immobile. I paid up and limped out to the car.

I didn’t really think much more about it because that was a relatively common experience for me–a regular errand turning into a fiasco for my sad little skeleton.

When I told my husband what happened, he suggested I write a letter because a company like Apple probably really wanted to know. I was skeptical but thinking about it when a customer service survey arrived by text and it felt like a sign. Making sure to point out that all my helpers were competent and friendly (I didn’t want to get them in trouble), I went ahead and filled it out, pointing out that being at the Genius Bar on those awful stools was bound to be painful for many, many people.

To my surprise, I got a call back from the store manager the very next day. He was super friendly and he shared that if I had asked, any of my helpers could have produced a chair with a back. The company knows the stools are challenging for a lot of people, so they have folding chairs available and even good desk chairs in a nearby meeting room. He was so nice about it, and I was so relieved that a) he called me back and b) they had real chairs that I simply thanked him and assured him that next time I would ask.

But I was left feeling a little bit empty.

I wasn’t exactly sure why I didn’t ask for a chair. Or why, if my discomfort was so obvious, did nobody offer a chair if they were so readily at hand?

So here’s where the “invisible” part of invisible disability really comes in. I look healthy. I stand up straight, I walk normally (before the neuropathy kicks in), and I’ve been well socialized to be super friendly and smiley and cooperative and all the things good white girls from suburban Denver are taught. So even if those staff members have been trained to offer chairs to people who need them, they looked at me and were unable to see me as a person who needed the help. It’s understandable, but it’s also a training problem. They can do better.

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But why didn’t I advocate for myself? The first surface answer is that I didn’t want to call (more) attention to my pain, and I didn’t want to be a bother. Though true, those answers don’t really capture the whole complexity of the situation.

Turns out, I’m not alone in my discomfort advocating for myself in this kind of situation. Research shows that people who have invisible disabilities have lots of reasons for finding similar situations challenging:

1. Knowing that not “looking” disabled means that we may not be believed when we express our needs.
2. The experience of stigma from others when we do express our needs is compounded by the exhaustion of having to constantly explain ourselves.
3. Our learning curves as we adapt to our bodies’ needs, anticipating when we do and don’t need to ask for accommodations. (Hendry et al., 2022).

There are more reasons, a lot more, but those all came up for me strongly in this particular situation. Essentially, I didn’t ask for a chair because I don’t look disabled. I didn’t want to explain myself. I didn't want to be the only one in the store who needed a chair and hear all the comments (even friendly and helpful ones) that were sure to come with that. And, as I was a competitive gymnast, climber, yogi, and adventurer, it’s still hard for me to conceive of my body as one that needs accommodations for a 40-minute visit to the Apple store.

Source: Jen Sarche. Photo Credit: @leighorne

So, yes, friendly Apple store manager, I should’ve asked for a chair. But I had good reasons for not doing that. Yes, I need to practice better self-advocacy, and I will get better at it. And you need to communicate to me that I am welcome and included and that I matter as much as your commitment to beauty and clean lines. If you know so many people hate the stools, why do you have them?

And here’s what we all need to do: recognize that many bodies work in unique ways. We need to design our public (and corporate) spaces with different bodies in mind and get comfortable talking about disabilities and bodies that work differently. All that so that my helpers and I might be equally likely to acknowledge what was happening and get me a god-forsaken chair.