I’ve been studying thanatology (the study of death, dying, grief, and loss), and I’ve noticed that many of its essential ideas should also be applied to people with disabilities. Recently, I’ve been reading about maintaining dignity during end of life using the Dignity Conserving Model developed by Harvey Chochinov. There is a very real potential to lose dignity as you age or become sick—your independence decreases, your functional abilities change, your privacy can be affected, and you may begin to feel like a burden.
For people who are aging or sick, these losses are typically acquired; neurotypical people are usually not born in these states. However, people with disabilities are often born into circumstances that can affect their dignity from the very start. They are born needing additional support and with different adaptive skills. Having a disability frequently impacts one’s right to privacy—not only in terms of physical care, but also regarding personal information, diagnoses, bodily functions, and intimacy. And the truth is, society often treats people with disabilities as if they’re a burden. Mencap, a UK organization that researches how people with disabilities are treated and advocates for their rights, has highlighted this problem. One of their reports noted that while there are some positive practices out there, overall there’s still a “lack of respect for the dignity of adults with learning disabilities” (Matthews, 2011, p. 188).
There is where the Dignity Concerning Model of Care comes in. I think that it can be extremely helpful when we are looking at the care that people with disabilities receive. Ideally, I would hope that we view all life as deserving dignity—regardless of someone’s capabilities, income, productivity, or level of “compliance.” But even beyond that moral belief, there is a reciprocal truth at the heart of dignity: when we treat others with dignity, we are also safeguarding our own. Chochinov captures this beautifully when he writes, “Delivering care that bestows dignity on others confers and safeguards the dignity of the provider.” In other words, the dignity we extend outward is the same dignity that shapes who we are and how we experience ourselves. If we want dignity for ourselves, we must offer it to others. There is something deeply beautiful about that circularity—how dignity moves between people, strengthening both the giver and the receiver.
And when we try to increase someone’s sense of dignity, it’s not just about what we do. We can’t simply say, “I talked to you twice a day. I gave you choices at dinner. You have free access to your cell phone,” and assume the person feels dignified. Dignity rests in how the person perceives our actions. Even if we intend to treat someone with dignity, that dignity may not come across. One reason for this is “care tenor”—the attitude and tone of the person providing care. Chochinov explains that “maintaining dignity goes beyond what one does with or to a patient [client, person, family member] and often resides in how one sees the patient” (Chochinov, 2002, p. 2259).
Some questions to consider:
- How do I define dignity for myself?
- How do my clients define dignity?
- Have I asked them?
- If they are nonspeaking are there body movements, facial expressions, nervous system changes that show me how they are feeling around me?
- Even if your client can’t define, it is still worth reflecting on.
- Do I have any prejudices that come across when I am caring for them?
- This question is not meant to shame anyone; this is an area of growth and introspection for everyone.
- Before immediately saying “no”, really think about this question. Even people with good intentions, even people who are passionate about caring for people can have internal prejudices.
- How often am I reflecting on this?
- This is a one and done question. Are you checking in with yourself consistently.