Author Archives: Aimee Sterk

Let’s talk about shame Part 2

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By Aimee Sterk, LMSW, MATP Staff

About a month ago, I started a discussion on shame and disability and how it relates to use of AT. Shame impacts how we see ourselves as people with disabilities and how/if we use assistive technology (AT). Shame’s opposite is owning oneself and one’s story and still feeling worthy. Addressing shame involves practicing shame resilience by naming it, talking about it, owning and telling one’s story (Brown, 2010).

Unfortunately, many people with disabilities are not given this opportunity. Whether born with a disability, acquiring it at a young age or as an adult or older adult; most interventions for people with disabilities focus on health and access: getting assistive technology, treating chronic conditions, advocating for access to school and work. None of these addresses the key components of shame resilience:  talking about shame and moving forward from there to tell one’s own story—as a person with a disability. Through shame resilience, we as people with disabilities can develop self-pride and the ability to be authentic. This includes not hiding one’s disability, not feeling ashamed of it; instead, naming it as a key piece of one’s identity for which one has, or is working to have, pride.

Media messages convey societal views of the lives of people with disabilities. Facebook is rife with images of people with disabilities as objects of “inspiration porn”. “Inspiration porn is an image of a person with a disability, often a kid, doing something completely ordinary – like playing, or talking, or running, or drawing a picture, or hitting a tennis ball – carrying a caption like “your excuse is invalid” or “before you quit, try” or “the only disability in life is a bad attitude”.

The intent of this inspiration porn; it’s there so that non-disabled people can put their worries into perspective. So they can go, “Oh well if that kid who doesn’t have any legs can smile while he’s having an awesome time, I should never, EVER feel bad about my life”. It’s there so that non-disabled people can look at us and think “well, it could be worse… I could be that person”.

In this way, these modified images exceptionalise and objectify those of us they claim to represent. It’s no coincidence that these genuinely adorable disabled kids in these images are never named: it doesn’t matter what their names are, they’re just there as objects of inspiration.

But using these images as feel-good tools, as “inspiration”, is based on an assumption that the people in them have terrible lives, and that it takes some extra kind of pluck or courage to live them…

And there’s the rub. My everyday life in which I do exactly the same things as everyone else should not inspire people, and yet I am constantly congratulated by strangers for simply existing (Young, 2012).

 

Eli Clare’s in his book, Exile and Pride, comments on the effects of the stories.

The non-disabled world is saturated with these stories… they focus on disabled people “overcoming” our disabilities. They reinforce the superiority of the non-disabled body and mind. They turn individual disabled people who are simply leading their lives into symbols of inspiration…  [The] stories never focus on the conditions that make it so difficult… I don’t mean medical conditions. I mean material, societal, legal conditions. I mean lack of access, lack of employment, lack of personal attendant services. I mean stereotypes and attitudes. I mean oppression… [Underneath stories of inspiration] lies pity, tragedy, and the nursing home. Disabled people know this, and in our process of knowing, some of us internalize the crap. We make [inspiration] our own… as a shield, a protection, as if this individual internalization could defend us against disability oppression…. To transfer self-hatred into pride is a fundamental act of resistance.

It is only after taking the steps to scrutinize and refute these internal and external voices labeling us with pity, and as recipients of care, living lives to be avoided, that we became comfortable with the totality of who we are as people with disabilities. Developing disability pride offers an alternative view where we are not forced to live in shame. Understanding who we are as people with disabilities also allows us to consider how our disability identity intersects with our other identities including race, gender, sexual orientation, religion, and class. Many people with disabilities face additional oppression from the communities of their other identities—race, gender, sexuality.

Have you scrutinized the voices you hear and listen to about yourself as a person with a disability? Have you taken a look at the intersections of your many identities and the impact on how you see yourself, if you have pride, if you reject inspiration porn? How do these relate to your use of assistive technology?

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Sound Machines as AT

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I have often seen white noise machines in doctors’ offices outside of treatment rooms to help protect patient privacy. It turns out they are helpful as a sleep aid and in decreasing the distraction of noisy workplaces. This makes them potentially helpful for people with insomnia and ADHD and other disabilities related to sensory processing .

Until recently, most white noise and sleep-aid sound generators were in the $80 range. Now there is a model available from Amazon for $16.51—Sleep Easy.  The cheap model is the one I tried at my home. I have had it for about a month and do really find the sound soothing. I’m not sure it actually helps me sleep, but I do know I no longer hear my cats stampeding outside our bedroom door in the night. My guess is that it would help cover traffic sounds and other ambient city noise as well. There are two speeds and you can adjust the tone of the white noise by rotating the plastic casing so that different air holes are opened or closed. My husband prefers the Sleep Easy to the fan we were using for white noise before as that made our room chilly for him.

Other sound machines offer different sounds like thunderstorms, waterfalls, crackling fires, summer nights, and birds. They range in price from $20 to $95.

For me, many canned/recorded sounds of the prairies or rain just don’t do it—so I would think trying the machines in the store before you buy them would be important.

Perhaps some sounds would add to the distraction in the workplace as well.

Have you tried a sound machine for sleep or sound cancellation in the workplace?

What was your experience?

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This entry was posted in Cognitive, Mood and tagged Attention, concentration, distractions, sleep, white noise on by .

Let’s Talk About Shame, Part 1

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In her book, The Gifts of Imperfection, famous shame researcher Brené Brown concludes that love, belonging, and connection are irreducible needs of all human beings. She emphasizes, “When those needs are not met, we don’t function as we are meant to. We break. We fall apart. We numb, we ache. We hurt others. We get sick… The absence of love and belonging will always lead to suffering” (p. 26). In order to connect on a human level and truly feel a sense of love and belonging, we have to know ourselves. Indeed, “There is something even more essential to living a Wholehearted life: loving ourselves” (p. xi).

According to Brown, shame is everyone’s biggest barrier to self-love and authentic living. Where guilt is “I did something bad”, shame is, “I am bad.” In her research, Brown has found that shame corrodes the parts of us that believe we can change and grow. Shame feeds on secrecy, silence and judgment.

We, as people with disabilities, must come to know and love ourselves just like everyone else, but societal views and barriers add to our shame and self-judgment. We are taught that a core piece of who we are as people—our disability identity—is something to avoid, hide, and “overcome” in order to be welcomed into society. Society builds in the secrecy, silence and judgment that feeds our shame, and we internalize that and add in our own.

Brown is convinced that one can be in the middle of a shame experience and not even know it. This is very true for people with disabilities. In coming to know and understand ourselves as a people with disabilities, we recognize societal views and our own views and the internalization of those views. Religious teachings that the cause of disability is sin and the need for people with disabilities to heal burdened some (judgment). Others hear messages from family and teachers to hide their disability and try to blend in (secrecy). Some are encouraged by physical therapists to walk at all costs, when using a powerchair provides more independence and relief from the exhaustion of walking (silencing our voice of what works best for us). All of these messages from family, professionals, institutions, and society have underlying messages of shame, encouraging self-hatred, a wish to be “normal,” and hide our disability identity. And they bombard us every day, bringing in shame without us even knowing.

All of these messages also impact our use acceptance and use of assistive technology related to our disabilities. I have hidden some of my AT in shame and not used some AT in public settings because of shame. Then there are the messages about certain types of AT being better than others–being encouraged to walk with crutches as “better than” using a powerchair.

How has shame impacted your coming to understand yourself as a person with a disability? Has it impacted your choice of assistive technology? Has it impacted whether or not you use assistive technology?

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Panic Attack? There’s an app for that!

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By Aimee Sterk, LMSW, MATP Program Staff

I had my first panic attack about a month ago, outside my doctor’s office. Stress from recent health crises and triggers from childhood trauma culminated in a very scary experience. My friend was able to talk me through breathing /stopping hyperventilating and came to get me and take me home.

I talked with my therapist about plans to prevent a future full-blown panic attack. She suggested noticing symptoms that came up as my anxiety increased. For me this is sweating, pounding heartbeat, and feeling trapped. Knowing this, she suggested using several interventions to prevent escalation and  breathing techniques to try to calm myself. This worked and helped for the next couple of days.

That is, until I was at an emergency preparedness conference and they were talking about critical incident stress management (CISM). I had recently run into a woman who I worked with when she/we were attacked and she was choked at our workplace. She could have been killed in the attack. After that incident, we had a critical incident debriefing. At the conference, the memories of that incident started to come flooding back, along with the feelings of guilt having recently run into my former colleague. Then, the conference presenter showed a video of workplace violence as an example—in a hospital setting (which was the setting of our attack). So, then I was done for. I hastily left the room and retreated to a quiet corner down a hallway.

I was breathing rapidly and tried to call a therapist friend immediately as my attempts at regulating my breathing were failing miserably. I got a voicemail. Not wanting to bother the friend that helped me last time, I decided I was going to try to go it alone until the therapist could call back.

I remembered that I had downloaded PTSD Coach, an app designed by the Veterans Administration, onto my iPhone and had been using it for anxiety and depression. The app has a tool for managing symptoms and one of the symptoms you can select is “Reminded of Trauma.” I selected that and rated my distress on a level from 1-10. I gave myself an 8 and the app suggested tools accordingly. It gave me the option of distracting and laughing/reading a comic book. I thought to myself ummm no, that isn’t going to work right now, so I gave that a thumbs down and asked for a new tool.

PTSD Coach then suggested Deep Breathing—putting on headphones and being led through a breathing exercise. Nice idea, but I left my headphones at home and I was at the end of a hallway where people could possibly hear me. New tool please!

Then we started to get somewhere—the app suggested slowly counting to 100. Yes, that helped me calm down some. Progress! After that, I asked for yet another tool, and it guided me through the RID Tool. R= relax. The app suggested breathing in and out slowly. As you breathe in think “let,” and as you breathe out think “go.” A 30 second timer started counting down.  You can then add 30 more seconds or move on. I took another 30 seconds.  The I=identify the trigger. The app suggested going over the last few minutes and hours and identifying what reminders of your trauma you encountered. I easily listed these in the space provided.  It then said once the triggers are identified, it is important to notice how it is just a reminder, and not the actual trauma happening again. At first I thought, “Well, duh, I know that,” but telling myself that did actually help. Then I filled in the box about how this experience was different from the actual trauma. In D, you decide what to do now, the app said you can try to decrease the trigger’s power by deciding to stick around and see that you can handle it and that your stress will actually go down the longer you stick it out. It also suggested if you are angry or in danger of harming yourself or others, you should take a time out and seek support. I decided to sit outside the meeting room for a little longer in peace and rejoin the conference at the next break. I did attend a few more sessions then found myself completely exhausted and decided to leave the conference early.

Meanwhile, I tried one more tool before going back to the conference. The app suggested a grounding exercise, “Walk slowly focusing your attention on what it feels like to take each step.” This was a great way to re-center and continue calming myself. I got outside for a walk and remembered that walking and being in nature always helps me. After my walk, the app asked me to again rate my distress level. I gave myself a 5. Much better than before.

***Note if you give yourself a 9 or 10 the app does suggest calling for help using people you have pre-loaded into the app and/or nationwide hotlines.

The app has dozens of exercises to choose from and eventually “learns” your favorites and suggests them more often. It really has helped me cope and manage my PTSD symptoms.

Have you tried PTSD Coach? Has it helped? Any other apps that help you?

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