Guest Blog

When Assistive Technology Breaks

04 Jul 2018 by Hilary K.

[Image: "Magical Child" - Face of a young boy rendered in a messy thick painted splatter style.  Rendered in colors periwinkle, sky blue, navy blue, lavender, mauve, red, pink and orange.  Background is splattered in the colors pink, yellow, lime green and light blue.]

Some of you in my personal network know that today a tragedy occurred: my iPad died.

Because I’ve had difficulty backing up data on iCloud (I have poor executive functioning and *autistic inertia* to thank for that), much of my recent work – 8 months worth – is likely gone, though I’m holding out hope that most, if not all of it can be recovered. The prospect of losing all my precious data is so devastating because I have solid projects that were lined up for publication– my “Faces” project, for example. I’d also been hired to work as a volunteer comic book artist, drawing up super hero persona’s for chronically-ill children through a non profit organization called The Super Hero Project.

I use my iPad as both an emotional and creative support.

I lay this predicament out before you because this is something often made light of among most non-disabled people. Yet, this is a reality that disabled folks live out at one point or another– the breaking down of an assistive technology, such as a mobility device, adaptive eating device, an iPad, a speech-generating device (SGD), or screen reader for computers, smart phones and tablets, etc. To some, calling a broken iPad tragic may seem rather silly. I mean, how useful are smart phones and tablets anyway?

I’m autistic and have an array of cognitive deficits/chronic illnesses, so I use this device to participate...and navigate the outside world.

“Millenials are just walking around looking at screens instead of taking in the world around them and communicating the good, old-fashioned way” (oh, you know you’ve seen these memes on social media). But for those who know me intimately, I use my iPad as both an emotional and creative support. It’s a mental/cognitive/functional aide. It’s not difficult to see how my iPad breaking distresses and hurts me. I’m autistic and have an array of cognitive deficits/chronic illnesses, so I use this device to participate in support groups, to receive medical care and mental health treatment, to schedule and dose my multiple medications, to coordinate appointments, to navigate the outside world, and more.

An art app that I use, Tayasui Sketches, is wonderful. This app is great because of having to recline due to spinal problems– I can “paint” without knocking over cups of water or smearing paint all over myself, the bed or wherever else I’m having to lay. Needless to say, I also can’t clean up my own art messes, and hiring studio assistants is out of my financial league. On my iPad, brush strokes occur with gentle swipes of the finger or stylus to lessen the pain in my hands, which have quite a bit of difficulty moving back and forth quickly, a movement typical in pencil/charcoal shading or short, multiple brushstrokes (think Van Gogh). Also, many of you may have noticed how I’ve been creatively collaborating with my kids. The cut and paste option has allowed us to combine our drawings and paintings to make fantastic illustrations and comics.

The accessibility of this app also means I can complete works of art in waiting rooms, during and between medical procedures, and the hospital bed. And, for those who know me well, I’ve spent much time creating while in "medical crisis.”

“Cleveland Clinic Healthcare Deity”: The heads of three doctors, two women (on the left) with short dark hair wearing glasses, one man (on the right) wearing glasses. They all have halos which merge, the text within each halo reads from right to left: “Mind”, “Body”, “Insurance”. Their heads are peeking through Seraph wings with an all-seeing eye at the center. Judeo-Christian iconography style. Above them is the poem title: “Doctor’s Appointment” the body of the poem is positioned beneath them and reads: “what comes through the brown metal door/ into this sterile room/ isn’t the grim reaper, not exactly–/ a misunderstood angel in a white coat/ a deity in straining….. the judge.”

I thought I would show you folks my tools [see full blog], since, questions have been raised in the past over whether or not my portrait work was truly *original* and not just from a selfie rendering app. None of you in my current social network have raised them, but critics have, especially in the largely ableist art community. Every work I create is one-of-kind, rendered stroke by stroke, by my own hands with and w/o a stylus, on the iPad.

I wait to see what the tech future holds in store for artists who cannot use their arms or legs and who can't hold a tool in their mouth – I was thinking brain-wave technology which the user can operate it with their mind through use of a headset – I know EMOTIV has been working on similar virtual reality stuff. I imagine Apple and other tablet manufacturers/programmers will want to get on this.

Fortunately, I had the foresight to cough up an extra $60 for a two-year damage/replacement warranty for the iPad, and I should expect to get it back within two weeks. While two weeks is a long, long time to be disconnected to my supports, I will be able to resume my work. Though I’ll have to mend the huge rip that this circumstance has created in my work and plans, I have the assurance I won’t have to go without my supports long-term.

This situation is a nervous reminder for the times my other assistive devices may break down.

But, this situation is a nervous reminder for the times my other assistive devices may break down and need repair, such as my wheelchair and forearm crutches. Living on a low-income with multiple access needs is stressful. This has all taught me the importance of planning ahead, and using the freaking iCloud for backup, even if I have to have help doing it.

I could sure use a “hug” right now.

[Note:  Visit Hilary's page for the full blog

Hilary K.

I’m an autistic writer, philosopher, artist, spouse, and parent who home-educates my three neurodiverse children. I’ve taken up blogging and begun to express my thoughts and feelings about autism, mental health, gender, chronic pain, chronic illness, disability, and civil rights in visuals and writing. My calling is to not only give my children the best of myself so they can grow up to be confident, caring, and empowered adults, but to be an artist advocate and story teller, flowering forth work that represents and/or supports the diversity of life experiences of those of us in the IDD community. Along my journey, I hope to reach other Autistic parents with my blog, "Freeing My Heart: An Autistic Parent & More"