In this post, I’m going to attempt to digest my own experience of shame in terms of disability and the larger context that surrounds it. Similar to my previous post, a lot of this draws on the essay “Constructing Normalcy: The Bell Curve, the Novel, and the Invention of the Disabled Body in the Nineteenth Century” by Lennard J Davis.
Disability in Historical Context
The rise of disability as a “problem” occurred in context of the creation of statistical averages and ideals. It happened in the milieu of eugenics – the concept of an attainable human perfection. Before that, the ideal was seen as the territory of the gods, and not something humans should aspire to reach. With the creation of an attainable physical ideal, humanity also created its shadow at the left-most end of the bell curve: Disability and the less-than-ideal.
Remember with all shadow work, this is the part of the culture that has been disavowed, rejected, cast aside. And just like personal shadow work, often everything that is thrust into the shadow is seen as equally bad or vile or terrifying. Just as my fear of tight spaces gets lumped in with my nightmares and that gets lumped in with the horror of the thought of missing an electricity bill, the things in the shadow are not seen discretely.
Emma Goldman – the feminist hero who fought for the 40 hour work week – wrote in favor of birth control lest we “legally encourage the increase of paupers, syphilitics, epileptics, dipsomaniacs, cripples, criminals, and degenerates.” She lumped the poor, the criminal and the crippled together, you see. She wasn’t the only one. Karl Pearson lumped together “the habitual criminal, the professional tramp, the tuberculous, the insane, the mentally defective, the alcoholic, the diseased from birth or from excess.”
As Davis writes, “The loose association between what we would now call disability and criminal activity, mental incompetence, sexual license and so on established a legacy that people with disabilities are still having trouble living down.” Davis explores further the Social Darwinism that resulted in the “conflation of disability and depravity.”
Given the context of my blog, we all know this just the fact that both the disabled and the depraved are heaped together in the unwanted, untended, feared and despised Cultural Shadow.
Not Just the Nineteenth Century
A few weeks ago as part of the debate surrounding pre-existing conditions with the new healthcare legislation, an Alabama congressman was quoted saying that “people who live good lives” don’t get sick. This stereotype – lumping the disabled in with the evil, immoral, and depraved – is alive and well.
Look at how the homelessness problem is treated in our country. “I won’t give him a dollar, he’ll just buy booze with it.” The veterans, schizophrenics, and addicts of our national shadow lurk under overpasses to stay out of the rain, because we are unwilling to look at them as individuals.
People with disabilities have come together in recent decades to present a united front for political representation and rights, but the group still struggles to shake the shadows from their feet – like lingering scraps of toilet paper.
This whole concept is also tied to the unspoken theory that bad things only happen to bad people. This is because a lot of different belief systems conflate who you are as a person with what happens to you in life. As if, in being “righteous” you become bullet proof somehow.
The Secret says you call abundance to you by the vibrations you put into the world. A lot of people I know believe in karma – that bad people will get what they deserve. And the Bible? Well, the Bible actually tells the truth of things, but most people don’t bother listening. It tells the story in Psalms 1, in Psalms 73, and my favorite for the disability conversation, in John chapter 9. “Neither this man or his parents sinned…” Jesus said of a blind man.
Look, we all know this supposition is inherently false, just from our own personal experiences. Good people suffer. Bad people win. Good people have good things happen and bad people have bad things happen. The universe is capricious. It’s what you do when those things happen that define you as a person. It’s the choices you make following those things that define who you are.
The Value of The Worker
Beyond the fact that the disabled have been heaped in the shadow along with criminal, addict and other seedy elements of society, there’s another aspect to the shame. The ability – or inability – to work.
I’m going to quote this whole paragraph from Davis, because I cannot paraphrase this point:
“The emphasis on nation and national fitness obviously plays into the metaphor of the body. If individual citizens are not fit, if they do not fit into the nation, then the national body will not be fit. Of course such arguments are based on the false notion of the body politic – as if a hunchbacked citizenry would make a hunchbacked nation. Nevertheless, the eugenic notion that individual variations would accumulate into a composite national identity was a powerful one. This belief combined with an industrial mentality that saw workers as interchangeable and there for sought to create a universal worker whose physical characteristics would be uniform, as would the result of their labors – a uniform product.”
Don’t forget: the concept of disability rose as part of the shadow at the same time as the industrial revolution. This means that as the statisticians and eugenics theorists were organizing people into and out of the cultural shadow, they were doing it with the factories and their output in mind.
I don’t have to search for nineteenth century cartoons to find the notion that people with disabilities are freeloaders mooching off of the system.
When I’ve used the ADA list and definition to come to terms with my disability, I’ve bumped into more than one person who assumed I meant I could “get a check.” I don’t want a check from the government. I’m still – thankfully – gainfully employed full-time. I don’t need a check. But I do sometimes need a wheelchair. And being identified as a disabled person would make that easier, since my disability is invisible.
I found it unsettling and shaming to have people assume that I’d want to understand this aspect of my identity only in terms of what I could “get” out of it. I’m in pain. I am devastatingly out of energy.
A lot of my friends have expressed frustration with people who park in the handicap spaces who “don’t need it.” I’ve caveated more than once – when talking about getting a pass of my own – that I’d only use it on bad days.
I don’t look like I need it. But I can tell you, sometimes, I really really do. And honestly, it’s none of your goddamned business when that is the case.
This last one probably cheeses me off the worst. It conflates disability and retirement. It suggests – just as the top one does – that disability is the government dole you apply for after unemployment runs out. It doesn’t talk about how hard it is to qualify, or how shameful it is to admit that you’re on disability.
Even though our nation doesn’t rely on blue-collar factor workers to the same extent that it did in the nineteenth and twentieth centuries, we still maintain values as if it did. We still value that strong, uniform man at the factory lines (pay you no mind to that Rosie down their riveting, she doesn’t belong here). And we still devalue anyone who doesn’t meet that uniform worker.
Expunging the Shame
The only thing shame can’t survive is being spoken, and being heard with empathy. If you want to read something powerful, I recommend Laura Minges’ three part essay called “Disability Shame Speaks” in which she speaks about her own demon of shame, and gives it a relentless, powerful voice.
My husband was afraid I’d let the psoriatic arthritis take over my identity. That it would be a huge part of who I am. It’s not. I wrote out a list of 112 things that I am, and the disability and PsA represent 2.7% of the list. This is not a huge part of who I am, but it is a part of what I have to face on a day to day level. It’s not more than 3 percent of my identity, but it’s something I have to select on radio buttons, and extra fields to fill out on forms when I travel.
Some days are harder than others. Some activities are harder. Some feelings are harder to process.
I think, right now, at the fifth month of my journey, the thing I have the hardest time grasping is that this is going to be a part of the rest of my life. That this is something I’ll learn to adjust for and plan around for the rest of my life.
I’m 41. I’ve got ambitions and goals, and dreams. Hell, I start grad school in the fall.
It’s daunting that I’m going to be injecting myself with medications, taking wheelchairs through airports and dealing with flares and pain and fatigue for the rest of my life. I’m afraid – in the back of my mind where I don’t like to shine the flashlight – that I won’t be able to do all of the things I want to do. I’m afraid that eventually I won’t be able to work.
Just as the obese are considered “lazy”, the disabled are as well. I think about my own feelings and thoughts as I tried to sit in that scooter at the grocery store last weekend. I was worried that people would think I was lazy. I was worried people would think I was joyriding instead of using a tool provided for people with needs like mine.
I have to admit, a lot of my negative self-talk is around laziness. Laziness and Selfishness. Imagine laying under a heated blanket on top of wedges of memory foam because of pain, and unable to move because of deep, debilitating fatigue. You’ve just taken a shower, and it put you to sleep for an hour or more because of the energy it cost you. Imagine laying there with a negative self-talk loop about laziness and selfishness. Now, in that space – ask for help. I dare you. Comes super easily, doesn’t it?
Asking for help is so hard, it’s almost as painful as my joints. It doesn’t just feel like admitting defeat – though that’s part of it. It doesn’t just feel like swallowing pride or giving up on personal dignity – though that’s part of it. It is also going against a fundamental part of my personality.
While I feel like the disability has not impacted more than 3% of my identity directly, I do wonder about its other impacts on the remainder. What does it do to my ability to trust? My independence? My willingness to let others do something for me? How does it change the shape of who I’ve always been? I don’t know yet.
I hope it changes those things for the better – softens some of my hard edges. But trusting a stranger to drive my wheelchair is still pretty much hell on earth. Let alone asking them to stop at the bathroom so I can pee.
7 thoughts on “Disability and Shame”
My brilliant daughter. The first post was so painful, I could not comment on it. The second was way above my head. But this one prompted me to say a few things.
I feel the pain you are going through. I really am trying to comprehend how having a debilitating disease at such a young age must feel. But I am struggling to understand how you can let the cart thing bother you so much. Heck, if and when I get to go traveling, say to Savannah, I totally plan on looking up renting motorized transportation. Because while the pain of my plantar faciitis isn’t anywhere near on the scale of what you’re dealing with, it does limit how long I can spend on my feet and totally ruins the day when I am just plain Done.
As for myself, it could be my age, I don’t know, but I have no issues riding the cart, or a scooter or anything else that lets me do what I want to do with minimal pain. If anyone cared enough to ask I would tell them why, but other than that – the h.e. double hockey sticks – to what others think. Get the sticker for the car so you can park closer when you need to – that’s why its there; ride the dang cart if you need to (ditto); let one of the hospitality folks at the airport give you a hand – you are not the first and certainly won’t be the last to ask for a pit stop. People don’t usually ride in wheelchairs unless they need them – its not normally considered a ‘fun’ thing.
One thing your essays are doing is calling attention to the silent diseases and hopefully will make others think twice before looking side-eyed at someone in a scooter.
I love you with all my heart and I hope that with all of our support you will get through the mental part of this tragedy and arrive at a coping place – at least one that lets you move on with your dreams for now.
I love the effort you’re putting into this series. One metaphor that springs to mind relates to the cultural perception of the “lazy artist”. I wonder if that plays into a different bit of your shadowy resistance to being called lazy. Because certainly reading, analyzing, processing, and sharing the way you have done is something “anyone could do,” right?
You’ve given fodder for deep thought here, and that took WORK. So I perceive no laziness.
On a similar note: Have you read Anne McCaffrey’s Brain/Brawn series? She explores a different variation of what it is to live with and overcome disability. I consider it one of her weaker series, but is that because I’m stuck in my ablism?
In addition to what you have so well described here,for me the mental and psychological side includes grief and loss. There is a certain reworking of self, to inccorporate “what is.” It takes time for all to unfold, to learn what is now a part of the past. There is also the living with uncertainty, which we all surely do even when fully healthy, but become acutely aware of during illness or disability.
You speak of the struggle with the things that externalize the internal changes you’re going through. I resonate to that. Our health challenges are different and so the conflict-evoking symbols differ too, but I think there’s an underlying connection. When I have to for a medical appointment or to get a treatment, which is a daily event right now, I have to undress from the waist up and put on a hospital gown. I immediately feel dehumanized, depressed, undignified and “badged” as a sick person. This is partly because of how damn ugly the gowns are! But it’s the “ritual” too of having to turn over my body to be poked, prodded, examined and “done to.” The treatment providers are as nice as can be, and yet I hate that aspect of the experience. Obviously it gets at the fundamental struggle with identity, as well.
Another example is what happens when I go out wearing something that’s an identifiiable signal that I have cancer. When I wear my cool-looking Lymphediva sleeve I get one of 2 responses – “Oh tha’t so awesome! For a minute I thought you had a sleeve” (tattoo that is). That’s kind of fun. The other is the recognition from other breast cancer survivors. They know at a glance what my situation is. While injuries can cause lympedema, the major cause, I believe, is cancer treatment. Because air travel is one of the things that can cause a flare, I wore my sleeve during this week’s travels. I did not expect so many women to notice it and then speak to me of their own cancer. I was sharing my story by wearing my story, which was not my intention. Now that I know to expect this might happen, it will be a little easier to handle. And over time as being a person with cancer is more woven into my sense of who I am, these encounters will seem more natural and less unsettling, I expect.
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Dear Ms Anderson,
Thank you so much for such an open piece. I found it when I Googled “disability and shame. I am on disability for depression/anxiety that became so severe in 2017 that I was hospitalized 3 times for suicidal thoughts. For the last few months I have received shock treatments because I seem to have treatment resistant depression. Today was especially difficult because I had to miss a Sunday morning gathering of the spiritual nature. I had stayed up late watching a movie with my best friend. My body is not as resilient as it once was, due to my depression. The fact that I can’t manage to function well without sticking to a fairly rigid sleep schedule causes me to view myself as lazy. I am ashamed that my illness has caused me to quit work and get govt assistance. I’m ashamed that I am now “poor”. I am ashamed that I can’t “keep up” with others who can work, play and bounce back. Your well written piece reminds me that while I am now disabled, the shame I feel is misplaced. You helped me feel better today, and I appreciate it. I will continue to research and try to recover from this shame and realize that I am not worth-less. I just need to realize my strengths that I still have. Thanks for helping me grieve my losses.
Julie, I know how hard it can be to be depressed and how much our bodies demand we rest. Please know that you’re not alone. A great book about shame is Brene Brown’s “I thought it was just me (but it’s not)” – and it talks a LOT about how to work on that feeling of shame. I am glad that you found this post when you needed it.
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