So many disability resources and testimonials talk about regaining dignity. With the help of a new product, service, or skill, a disabled person can reclaim their independence and sense of self. I do not dispute this at all.
But if this “reclaiming reclaiming dignity” message is the go-to strategy in disability services, perhaps we can see it for what it is: a lens onto a culture that devalues disability. So perhaps we shouldn’t be trying to buy, learn, or sell dignity. Perhaps we should reevaluate the identities we’re willing to give disabled people. If we are determined to see a loss of dignity with the onset of disability, then we will need a recovery. But what if there was no loss of dignity? What if we accepted that our bodies and minds could be frail, unpredictable, or messy? And what if we said, “Hey, that’s MY frailty, MY mess, and it’s a sign of being alive.”
I don’t think life is about perfecting our bodies so that our genes never garble or trip. I don’t think it’s about building bodies that never make mistakes, that perform every task with mechanical accuracy. I think it’s about building a society that respects and endorses difference, a society that doesn’t seek to push disability to the margins.
Because what I see most often is that disabled people themselves think they have dignity that needs reclaiming. They face a physical or mental impairment, but they internalize a loss of self. They feel they have something to prove—as if they must earn our respect and their own self-respect all over again.
On the Blink 
Em,
You have very valid points however if we look at this from a different perspective, we can understand where a loss of dignity arises. Your view point is from having a disability from birth, therefore you haven’t lost an ability. We can’t miss something we never had. Loss of independence, social and emotional strains, and dignity are normal feelings for moving beyond a loss in abilities. Once a person loses an ability that encompasses their entire lifestyle it is easy to understand where and why their dignity is compromised. As usual this to depends upon the individuals starting point. Lack of dignity occurs when a person feels they’ve lost a vital part of themselves.
Stacey
I’ve been disabled from birth, Stacey, but my abilities have not been static. There was a time when I didn’t walk with a cane, a time when I didn’t need big dark glasses. So while I haven’t experienced a dramatic shift in visual acuity, I have had abilities that change. And my day-to-day experience of low vision is not consistent: tiny changes in lighting or weather can affect how much vision I will be able to use.
I don’t doubt how much people feel they’ve lost or whether they feel they’ve lost part of themselves, because I can empathize with these losses. I believe these losses are harder to bear in a culture that tells us our bodies should always perform at a certain standard. For people to believe they have lost dignity along with their vision is heartbreaking. We should fight against a culture that tells us that dignity depends on how useful we are, how independent we are. No one thinks that babies are not worthy of respect, and there are zillions of things they can’t do for themselves.
The same thoughts could be applied to aging. As people age, they often experience losses of independence and ability. Does this mean that they don’t deserve as much respect and courtesy as they once did, in their more able days? I don’t think so. Our self-respect should not be tethered to how much we can do – especially in comparison to others.
Think about it this way: the scariest thing about disability is helplessness, right? But helplessness and dependence are only terrible in a place where people use your helplessness against you. If we could build a mindset where people respect you at your most capable and at your least capable, disability wouldn’t be so frightening.
Emily, I enjoyed both your original piece and your response to “Stacey.” Your comments on disabilities that can happen any time in a person’s life span are so real and true. Some disabilities can even be temporary because they can be treated and healed. But our culture does need lots of fine-tuning in its attitude towards “The Different” whatever that difference may be. We seem to be approaching a time when it’s going to be acceptable to discriminate against people of the Muslim Faith just as we once rejected people of Japanese origin who were actually citizens. Our own city is looking at persons in the LGBT community as different and unacceptable and unworthy of the civil rights of the majority just as once it was acceptable to deny these same civil rights to black American citizens. It seems human beings need to have some group they can look down on or pity and treat paternalistically. All human beings should be accorded their innate dignity by the larger society whatever their differences are from some majority. Thanks for your perceptive comments. Lois