It’s 3am, I’m wide awake, and feeling guilty about it

This morning, I woke up tired. I know, big surprise for someone living with a chronic condition. Whether it’s painsomnia, stress induced insomnia or regular old insomnia, it’s all too common.

I take a prescription sleep aid every night. I’ve stayed away from more effective but more addictive sleeping pills and currently take a low dose tricyclic. I also take several supplements. I have found that melatonin, 5-HTP and l-theanine are an effective combo. However I still get those nights where I wake up every couple of hours or can’t get back to sleep. Sometimes I give up in frustration and take an over-the-counter sleep aid as well. Other nights, like last night, I feel guilty about taking anything extra and just try to get back to sleep.
Now I’m exhausted. Or maybe I should say extra exhausted, since I feel fatigued most of the time. I’m wondering, what is that guilt about?

I always feel like I should take the least amount of anything that I need. I worry about what everything I already do take is doing to my body. I feel like I need to justify all of my prescriptions. I wonder if I failed somehow because meditating and yoga don’t make me sleep.

But, I have a bonafide diagnosis for a debilitating condition. According to my sleep study I come out of deep sleep into light sleep 14 times an hour. If I need to take extra supplements in the middle of the night then so be it, right?

I think this comes down to a sort of internalised stigma about being sick. The assumption that you must have done something wrong to get sick in the first place. Or if you do the right thing you’ll get better. Or maybe it’s the assumption that if you try harder, or get tougher, you’ll get over it. Acceptance of my condition has come in stages. Recognizing my own internalized ableism is another stage. I think it’s good that I want to take the least amount of medication possible, and try to see where supplements can work instead of prescriptions. But that attitude is only ‘good’ to the extent it helps me manage my condition, not when it becomes a means of self-criticism for being sick. I already have enough fatigue without adding extra sleepless nights because I wouldn’t let myself accept that I need help to sleep.

Is Your Disability Your Personal Problem, a Social Problem, or Both?

So you have a chronic illness. Is that a disability? If it means significant restrictions to your daily activities, then, according to medical and government guidelines, yes, you have a disability. This may challenge the abilist stereotypes you might have absorbed from the media, where disability is usually linked to the need to use a wheelchair because of a spinal cord injury or limb impairment.

This might get you wondering about what exactly the definition of disability is, how do we usually understand it and what does that mean for how we value ability/disability. Mainstream medical models say the problem lies within individual bodies. Disability advocates say the problem lies in our inaccessible and abelist society. I wanted to post an excerpt from my instructor on disability studies to clarify these models and meanings:

 The medical model of disability positions disability as an individual physical problem.

The charity model sees disability as an individual personal tragedy that should elicit our sympathy. Dossa (2005) refers to this as the “personal tragedy model” of disability. The “supercrip” model positions disability as an individual challenge over which someone can triumph by dint of hard work and elicits our admiration. In the moral model, the inherently negative stereotype of disabled people, which as Kumari Campbell (2008) points out links to self‐hatred, is something to be borne solely by disabled individuals. What all these models have in common is that they individualize disability, problematize disability and locate disability in individual bodies that are defined as wrong (Wendell, 1996, p. 360). These all serve to “other” disabled people.

Wendell believes that none of these models serve disabled people. She explores and explains the social model of disability as a more useful alternative. This model, which came out of the disability rights movement turns the focus away from disabled people and disability and onto the able‐bodied and ableism. Framing disability as a social justice issue means that the difficulties that face disabled people are located within disabling social structures and attitudes.

The social model arose through the disability movement’s critique of responses to the care needs of disabled individuals. Through rejecting the medicalised or therapeutic model of disability in which power lies with professionals and disability is pathologised and individualized, the category ‘disabled’ was transformed into a collective political identity. Disability is understood as being constructed not through physical or mental impairment but through social, cultural and environmental barriers such as inaccessible education, housing, public spaces and employment environments; discriminatory health and social service systems; absent or inadequate benefits; and negative cultural representations. The social model requires us to engage with the marginalization and exclusion that disabled people are forced to face in disabling environments and challenge medical and social responses that enforce dependency.

What does it mean for our practice and for us as people, if we understand disability as individual rather than social? How is our practice impacted if we see most disabilities as resulting from individual failure to properly manage one’s life and avoid risks – including the relatively new requirement that parents/ mothers use genetic testing or amniocentesis to avoid having a disabled child? Alternatively, if we work from the social disability model and “value the differences of people with disabilities…what implications does that have” (Wendell, 1996, p.8) for our practice?

Most commonly, doctors are given the right and the authority to decide whether or not someone is disabled and to define the nature of the disability. What a doctor decides can and does determine access to benefits and entitlements. As Wendell points out, defining disability serves a larger political purpose. It reinforces the idea that disability is located in individual bodies (or brains); it makes disability into a problem of the disabled person; and it reinforces the power of doctors to pronounce on disability. But what then happens for people with unrecognized, undiagnosed or undefined problems? Where does illness, especially chronic illness, fit into disability definitions?

 Macias, Teresa. (2015). Unit 3: Disability theories and models. Accessed online Jan 26, 2015.