Rewriting the Old Disability Script

I guess I understand and appreciate what the author is doing here- if the disabled take control of the narrative, create the narrative of being disabled and integrate it possibly seamlessly into it just being another part of the human experience, it will make our own individual experience of being disabled not so fraught. Just another version of being. I'm not that optimistic about it. I have an invisible disability or more accurately disabilities and it's just not something people either want to get or can get it if they do want to. That's my experience anyway. It's an experience of constantly having to explain or remind of why something is difficult for you or you just end up shutting yourself off rather than go through life going through explanations and reminders over and over. Then there's the cold truth that many don't care or want to be bothered. I think on a very primal animal level disabilities are a threat. if you're of 'inferior stock' you'll take us all down. Our government certainly doesn't do anything to help the situation. Most disabled in fact live in government and tax payer approved poverty. We're treated as if in fact we are being punished for it. A neighbor confided in me that he receives only 15.00 a month in food stamps because his social security of 1300.00 is considered 'too high'. I mean c'mon. How much clearer could the message be that if you have a disability (not providing taxes) you're basically garbage? I mean, how dare you want to eat!

Bipolar disorder, and Cyclothymia, account for a vast proportion of America's 'disabled' population, and it's impossible to even begin figuring out how many great artists may have been afflicted with either condition. "An estimated 4.4% of U.S. adults experience bipolar disorder at some time in their lives." https://www.nimh.nih.gov/health/statistics/bipolar-disorder.shtml

The many comments about how aging is similar to disability misses the point of this article. I am a 69 year old woman. I read a lot. There are plenty of books with older women characters in all genres. I have many opportunities to see myself reflected in literature. I also read to learn about other ways of being - stories where the main characters are of a different race, or cultural background, or age, than I am. However, I can’t think of any novels with a disabled main character. How frustrating it must be to never see oneself reflected. And to realize that I haven’t had the opportunity to get “inside” the life of someone who is differently abled than I.

A major disability these days would be drug use. Would you agree? So much of our world these days is warped by the circumstances that create and even nurture a "reality" which causes many to feel and respond to the "other" as the often hostile and chaotic world it is and leads to isolation, severe emotional pain, violence and often death. PTSD is perhaps a normal response to the mirror reality of our times. We need to own ourselves, as Nicola has so courageously done, learn to listen rather than deflect and culture kindness and respect; building more prisons and policy-oriented treatment facilities won't solve problems but rather enhance what has become a global issue. We can learn to live and flourish with our collective disabilities as well as the personal ones. We owe it to ourselves, all of us, each of us.

I have been involved with people with disabilities my entire life--my husband and my sister. I have not had chronic disability until I hit my 60s and osteoarthritis began--everywhere. I did have a motor scooter accident that put me in a wheelchair for 3 years off and on. I understand, deeply, what disability does and means in society. Yes, I have read books by and about persons with physical disabilities, and some about persons with mental disabilities. We need more fiction and less memoir incorporating disability. As for flinging labels around, I want to state how much the terms ableism and ableist offend me. Like people with a disability, those of us without one (or a visible one) are complex, with emotional, psychological, economic, and social realities. Some people with disabilities have treated me like a servant in social gatherings. Others have belittled my personal sadness or pain: "you CAN'T know what it is to suffer!" And some people have offered me only anger and jealousy. Literature and all art is about making something that speaks to our humanity. To everyone's humanity. That is difficult for anyone, but when it succeeds, it sings. It connects. It is, and we are.

I'm old. I have mobility issues due to a chronic health problem. I am very grateful for doors that open automatically, and when in London using a wheelchair, for the cut-out curbs virtually everywhere. I once was grateful for the cart that would take me out on the beach; it broke and now there is a beach wheelchair, but this means I can no longer go to that beach alone. I have never thought of myself as "disabled" - I'm just a woman with mobility problems. The only time I am angry is at my various doctor's offices, in a medical school ambulatory clinic, where there is NO wheelchair service or an electric cart to take me to these offices. For reasons known only to the "bean counters", the pulmonology department is the very furthest from the parking garage and elevators. What were they thinking? People with pulmonology problems have trouble breathing and experience shortness of breath! Gee, a nice long walk to the office will help that! I never want to be defined by my age or by my mobility issues. I hope I will be remembered as a "person", not a disease.

Twenty years ago at a Women in Journalism conference, two disabled women journalists told us that those of us in the audience who weren't disabled could think of ourselves as "temporarily abled." Their words stayed with me through a fractured kneecap, low sodium blackouts, broken ribs...and more marginalizing, growing old. Ageism is possibly the most prevalent discrimination in our contemporary society. Add on the changes that aging creates in even a healthy body, and we old people are too often on the sidelines. Did I say "people"? I meant Women.

Ironic that the religionists, who condemn their fellow humans who happen to be LGBTQ (an issue barely mentioned in their "bible"), blithely ignore the many admonitions against judging The Other: Luke 6:37 Do not judge, and you will not be judged. Do not condemn, and you will not be condemned. Forgive, and you will be forgiven. Luke 6:41 Why do you look at the speck in your brother's eye, but fail to notice the beam in your own eye? John 8:7 Let him who is without sin among you be the first to cast a stone at her. Romans 2:1 You therefore have no excuse, you who pass judgment on another. For on whatever grounds you judge the other, you are condemning yourself, because you who pass judgment do the same things. Romans 14:10 Why, then, do you judge your brother? Or why do you belittle your brother? Romans 14:13 Therefore let us stop judging one another. Instead, make up your mind not to put any stumbling block or obstacle in your brother's way. This is just the short list, BTW.

Nothing much will change for the better for the disabled while our so-called president mocks them.

A Little Life by Hanya Yanagihara is missing from your list

The disabled will be considered disabled until their lives and activities appear routinely in everyday life all around us. On that day the term “disabled” will cease to have meaning.

I'm struggling to find a way to say something to the essayist -- who has done such a good job explaining a difficult topic -- without sounding like a scold. Here goes: I am a grey-haired woman. I am not grey. My son is a person with a disability. He is not disabled. That little bit of language, I think, would help to focus our attention away from the disabling condition and onto the person, where our attention belongs. We are each more than the sum of our individual parts. We shouldn't label each other by our least normative or desirable characteristic, whether it be age, weight, cancer, or disability.

Disabled people, unite. I spend time with disabled people and continually discover disability doesn't prevent personality or value, up to the point where dementia or mental illness breaks the possibility of social connections by the disabled person's loss of the sense of reality. Disabled people can form better pictures of themselves and tell their stories if they get together and talk. Our society offers too few chances of that. The disabled need to seek it out. Look to existing organizations first--religious organizations, senior centers. Watch as age brings increasing disability--the numbers of those disabled will change society's view of the condition of disability.

Thank you for writing this article. As a person with an acquired disability, it would be heartening to have inclusion of people with disabilities in stories who are upbeat, purposeful, and determined. It is important for disabled people to realize they can still have an impact. And personally, it would be heartening.

I too have MS and am disabled. This piece is so timely as tonight I will take a stage with Generation Women story telling. My story of finding my voice from a harsh type A business women to a disabled advocate for us. Thank you for this piece. Although my body is weaker my voice and soul have never been stronger. Disabled characters either fiction or real life are truly heroes and need to be written about. Thank you.

I feel age discrimination works this way, too - gray hair means you are less capable, less employable and if female, less visible. But it's hard to know how to deal with it, as it's come on slowly. At 52, I will probably just go back to coloring my hair because I'd rather be treated as a person than a category. Plus, I might need to get a job. Discrimination is not something I thought about when I considered the aging process. So far, it's the worst part.

I have yet to read the Crohns Disease novel or poem. I have not seen much Ulcerative Colitis belles lettres. I do not know of a test for Inflammatory Bowel Disease in fiction. Or is this not disabled? Or is there a limit to the need for a particular type of literature? Let authors write what they want. The only real criterion should be whether it is any good.

Typical people are more often characters because typical people outnumber all the others. Homosexuality and disability are a small subset of all people so they are less likely to be represented. In real life, I don't want to hear about anybody's medical issues nor hear about their sex lives, straight or gay, nor would I choose a book to read about them.

Interesting and informative article. I don’t like the label “disabled”. Acceptance and integration of differences has always been a struggle. Compassion and understanding are the keys to positive change for all of us.

There are children's books in which a character with a disability is empowered. One such book, a bestseller, in fact, is "El Deafo" - a graphic novel based on the real experience of the author as a child with hearing loss. I agree that we need more, though.

I have two mild disabilities: poor eyesight, and a nerve problem that forces me to walk with a cane. And yet I'm not too sympathetic to Miss Griffith's complaint. Instead of focusing on real problems, she goes on and on about whether novels or TV shows are politically correct about depicting people with disabilities. I don't care. I'm satisfied that JK Rowling chose a disabled veteran as her hero in her "Cormoran Strike" novels.

I wonder at the expectation that artists must be able to represent all manner of human life to the pleasure of those who are ... name the issue: disabled, gay, a minority? All art involves what we can only consider simplifications - that is how a story is conveyed. Even more of this happens in visual art and drama. I myself have had a partial disability for years - but one that is not all that apparent. But in all the scenes of my life, I can't remember many clearly disabled people. Were I to write the scene, I would disappoint this writer.

the first paragraph of this piece is an excellent and succinct analysis of how we are indoctrinated into [any] culture.

I am wondering if the book search for disability in fiction limited itself to visible disabilities. So many disabilities are not readily apparent. Mental illness is not readily apparent yet can be profoundly disabling with societal isolation as well making it even more invisible. I think that the number of books would be considerably more if mental and developmental disabilities were included.

While this article rings true regarding most books written for the adult market, much of the quality fiction currently written for young folk 10 and up is written with central characters who are living with disability. As an educator, I’ve had the privilege of exploring wonderful books with students who learn to see themselves and their classmates in their reading. I have seen how powerful well-written representation can be for not only students living with disabilities but also their peers, as having language and story to begin discussion, to elicit questions, and to normalize the experience of classmates creates pathways to honest relationship. There have been moments of deep reflection, with hearts and minds opening to ways of being that increase my hope that all of my students will have the opportunity to be seen, to be valued, and to be part of the creation of a more honest and inclusive community.

I so agree with this article. I would, however, expand the perspective to include those disabled by trauma, an epidemic that has filled prisons, mental hospitals, and homeless shelters. If my high school had had a respect for disability, and made sure there were support groups and help for the traumatized, many of us would not have ended in mental hospitals and rescue missions, or killed ourselves. We read of the able, we watched movies and tv of the fit and the loved and not disabled, and we slowly found ourselves painted as ignored, at best, or painted the villain at worst, writing as a Vietnam Vet. We thought we were alone, spent most of our lives alone, and many of us die alone, some, terribly, blaming themselves for the mystery of their dysfunctional lives. Story does create culture, as you say. And there are precious few storytellers out here educating readers as to the the struggle and courage shown by disabled people, both of physical and of emotional disabilities. For some, family is the most terrible word of them all, and certainly, the military has tossed the traumatized and lost to the curb, many, many times. But people really don't read much these days, and tv is to sell stuff to people with money, and we of the disabled class usually have little of that. Income inequality and disability fiction pretty much would have to go hand in hand. Hugh Massengill, Eugene Oregon

Growing up with a severely disabled sister has allowed me to see the world from a wheelchair perspective. Steps and curbs and uneven pavements and crowded stores oh my! As we all get older, the ease of mobility becomes important for all of us. Our society needs to address too many difficult situations. One being the employment of the disabled and the elderly. And also with the elderly population exploding, the ability for the elderly and disabled to be more mobile. Our lives are enriched by all people and we need their stories. Thank you for opening our eyes to this incredible lost narrative.

A wonderful item. Although I did not have the sexual dimorphism problems, I was hit by a car at early age, last day of first grade (had near death experience and all, but is different story) and it changed my life greatly as I was mixed up in hospital with a kid with a bumped head, they took him to intensive care for a broken neck and sent me home with instructions for a bumped head, possible concussion. They realized the had the wrong kid in ICU after I was already gone, and the admins feared being sued. They destroyed the paperwork in fear. I learned this 20 yrs later from the Lead Nurse. So, I went thru life with an undiagnosed broken neck that caused me constant pain and problems, yet nobody believed me because it was not apparent to them. I even went thru the Navy, and had further accidents there. I did not think much of it then as I was already used to living with such high pain levels from my neck, that the newer injuries seemed low grade...they were not. Now, at 56, I am completely disabled, I have troubles walking, I have had my neck at C5-6-7 fused and lamellae removed and neural foraminae cleared. Presently very sedentary and surviving on SSI, in a camper in a friend's yard. But in between I was a swordmaker, Rennaissance Faire Worker, did Sci-Fi Conventions and ran all up and down the West Coast with my blades. Further injury finally made it so I could not use my hands and arms almost losing them to arthritis too. I am just one out of a million such stories!

This article is honest and inspiring. It also reminds me of my sister's observation that we don't have any emojis for disabilities or disabled people on our phones. Is it because we can't image how to portray aspects of a disabled person's experiences? A wheelchair or a walker seems safe enough. At least as a beginning point. My sister's observation comes from living with the aftermath of being treated for Stage 4 appendix cancer. At the very least, we should think about emoji oxygen masks.