Continuing NYT series on Disability – week two
What Disability Means
Last week, The Times opened a series about disability, broadly considered, with an essay about disability, pride, and identity by Rosemarie Garland-Thomson. We asked readers to share their own stories in the comments and on Facebook.
I was diagnosed with a degenerative disability early in life, but appeared able-bodied and mostly “fit in” — physically, at least. As an adult, I became a wheelchair user, and the world changed around me. It took me a long time to find my tribe and acknowledge my disability identity — I now proudly identify as crip, and fight for the rights of my fellow crips.
It surprised me how sitting down and using a mobility aid changed the way others viewed me. I’d gone from being a well regarded professional to a marginalized and oppressed member of a minority group. When my workplace refused to build an accessible toilet, I had few options available to me, and my doctor told me to change my tampon in my office, with the door locked. People looked at me differently, as though I was not one of them — they jumped out of my way or apologized to me in shopping centers, even when they were well out of range. My experience as a non-walking person could not have been more different from my experience as a biped, even when I was on crutches.
There was no place for me to find out about crip pride, about disability identity — no cultural spaces, no parades or events. We’ve started creating “crip cultural spaces” in Australia, with zines and radical self-love cards. It’s how we make change, when we realize that the social model of disability makes sense and that mobilizing our forces is the only way we will cure oppression and marginalization. I’m proud to be part of a rock star community of activists in my country.
— Submitted by Samantha Connor on Facebook.
The comments here show how far we have to go.
One assumption is that we are looking for sympathy. Wrong. Take your pity, sympathy and the inspiration you get from our “brave fight” someplace else.
Another theme is that we are trying game the S.S.D.I. system. Please. As others have pointed out, getting through that process is hardly a walk in the park, and after that you may get a whopping $1,200 a month, MAX (which is taxable income BTW). Try living in any urban area that is likely to have the infrastructure that makes living with a disability tolerable on the money you get from S.S.D.I. Please.
— Submitted by DS of San Francisco.
I Would Proudly Live This Life Again
Growing up, I was one of the only visibly disabled people in my public grade school and high school. Since my friends were all abled, as is my family, I never considered “disabled” as an identity. Thanks to the annual M.D.A. telethons, I thought disability was something to be ashamed of, or a weakness — that everyone with a disability wanted to be fixed, and that wasn’t me at all. I loved who I was, and had pride in my identity even if I didn’t recognize it in that way.
Social media and the internet changed things for me. I was able to connect with other disabled individuals and see how they felt about their identity. In college, I read every book I could on feminism, which led me to books and articles on the disability rights movement. I found communities online where there were heated and engaging conversations about what it means to have a disability in a world that isn’t built with us in mind. That’s when I proudly labeled myself disabled.
There are certain symptoms of my disabilities that I have difficulty navigating: the pain, the anxiety, and breathing problems. But would I change who I am — would I take away my disability? No. Being disabled is too linked to my humanity, to my empathy, and my strength. It dictates my relationships with others. What I’ve experienced in life is a story worth telling, and a road worth following, despite how society tries to tell us otherwise. I would proudly live this life again if I could.
– Submitted by Erin Hawley of New Jersey
Pride and Psychiatric Illness
I would say that, if we’re thinking specifically about psychiatric disabilities, there is no “pride movement” because of the shame and stigma that still exist around psychiatric illnesses (and other disabilities). I mean, who wants to be visible when so many still think of depression/bipolar as character flaws and when illnesses like schizophrenia and schizoaffective disorder are so pathologized, even criminalized?
– Submitted by Bffishe of Columbia, S.C.
A funny thing happened to me in the grocery store last week. I’m quadriplegic and, at best, about 4’ 7” in my chair; I loathe asking for help in getting things from the top shelf in the store. While checking out some fresh corn, a blue-haired woman, about 4’ 2” offered to hand me the low corn if I’d hand her the high corn. Perspective is a funny thing.
– Submitted by JB of San Diego
Any Person at Any Time
First, I feel a tremendous pull to start by mentioning how refreshing to see this being talked about (even more so, being talked about in The New York Times).
I’m a 29-year-old who was once given a life expectancy of 13. Fifty-three surgeries, countless long-term hospital and rehabilitation stays have been the “norm” in my life. I often discuss with my partner the disconnect between my queer and disabled identities. How I seem to have developed a sense of pride in being queer, but often reject any identity pertaining to disability. I’ve begun to try to weave the two together and noticed that when doing so, I’m more comfortable introducing disability into queer spaces, than I am introducing queerness into disability-related spaces. The two feel contradictory, but inside I know they shouldn’t. What I do know, or at least believe to be true, is that disability remains invisible and/or hard for able-bodied people to look at, because unlike racial, cultural, or sexual identities, it is an identity that any able-bodied person could possibly face. And let’s be honest, that’s scary. Most identities are set in stone. You are heterosexual or you are not. You are a person of color or you are not. Disability is something that can happen to any person at any time — and that’s a reality that’s hard to face. It’s hard to face when you are disabled, why wouldn’t it be hard to face when you are able-bodied and aware that you could become disabled?
I am so grateful for this being talked about. I think visibility is always productive. I think taking pride in ourselves, our abilities, and our resilience is impossible without it.
Thank you for a pleasant morning read, to both the author, and The New York Times.
– Submitted by Alyssa Armbar Andrews on Facebook
A Different Pride
As a divorced, working mother struggling with multiple sclerosis, I’d never seek to find pride in the label “disabled.” Maybe it is just me, but I already feel proud that I am able to drag (sometimes literally) myself out of bed and provide for myself and my children. Watching my children flourish is all the adulation I need. I don’t feel the need to draw additional attention to my “disability.” Most days, I just want to feel “normal.” But, maybe that’s just me.
– Submitted by Shanonda Nelson of Orange, Conn.
Still Much to Do
I have been a wheelchair user since I broke my neck in a fall and sustained a spinal cord injury in 1976 at the age of 18. In the months following my accident in the rehab hospital, while I struggled to adjust, I also met some truly good people learning how to survive with a spinal cord injury, and I learned from them. After I got out of rehab, I just tried to get on with my life, going back to college, learning how to drive a car with hand controls, etc. But I mostly avoided making any close connections with other people with disabilities. You could say I was in denial about being disabled, and all of its ramifications. Then, I was very fortunate to have been introduced to the disability rights movement in the early 1980s, working at an independent living center. Learning how to be a strong advocate for the rights of people with disabilities eventually became a career. Learning about the various forms of ableism and discrimination faced by my friends and colleagues with disabilities, and how to effectively fight this oppression, ultimately has changed my life. A lot has changed over the past 40 years, both for me and for many of the 56 million Americans with disabilities. The passage of the Americans with Disabilities Act in 1990 was truly a milestone, and has led to great improvements in accessibility and opportunity for things that many nondisabled people take for granted: education, employment, housing, and transportation, just to name a few. But many people with disabilities still face rampant discrimination and misunderstanding. I will not stop working until ableism is eradicated.
– Submitted by Michael Muehe on Facebook.
A Tough Lesson From Gay Pride
The gay pride movement of the ‘80s was full of able-bodied young men, many of them with good jobs. They had leisure and strength to make a social movement.
Why aren’t they making a pride movement, in other words? Maybe getting by day to day is more important. Living. Surviving. Avoiding more pain, living within what are often narrow physical, mental, and financial constraints.
Other people will have to be heavily involved in any such movement. And that’s the problem.
– Submitted by Away, away! of Iowa
Narrative and Nervousness
Nervous. That’s how people act when they learn that I’m legally blind. They hear the word “disabled,” and, suddenly, they become anxious. They start speaking cautiously, as though they’re worried they’ll offend me, or that, somehow, I won’t understand them. This is most apparent with my teachers. Back in high school, and even now in college, my teachers acted super antsy around me. They constantly asked me if I was O.K.; if I got what was happening. The reason for this was that they’d never met a disabled person before, and therefore didn’t know how to act around me. See, to them, disabled kids were the ones who got hidden away in “special” classrooms. They were the unfortunate and embarrassing mistakes that needed to be swept under the rug. What my teachers, and every ignorant, uninformed person who thinks this way, don’t seem to understand is, even with a disability, I am still very much a person. I am capable of loving, laughing, crying and learning. I have a full range of emotions and beliefs, and am perfectly capable of thinking for myself. All I need are a few accommodations, and, as long as I get them, there’s no problem, or reason to discuss my condition. I tried to prove this to people by getting perfect grades, acting in theater productions, and joining tons of clubs. But that never seemed to make any difference. I was still, first and foremost, “the blind kid.” And, to be perfectly honest, I don’t think I’ll ever be anything but “the blind kid” to other people until we start changing the narrative; the narrative that persons with disabilities are defined solely by their disability; that their disability somehow diminishes their personhood. Yes, physical and mental disabilities are and can be very serious. But there’s a substantial difference between acknowledging that someone needs a little bit of help, and making them out as sad, sorry pitiful creatures who need to be hidden from “normal” people. And the sooner we stop doing that, the less nervous everyone will be.
– Submitted by Nathan Liu on Facebook.
Awareness Is Not Understanding
Thank you for this thoughtful piece! I was diagnosed in adulthood with Asperger’s (now autism spectrum disability) and while it answered my questions about why I struggled in school and work, it hasn’t helped me get and keep jobs the way I wish it would. In 2012 The NY Times published my letter about my experience of being diagnosed and how accommodation allowed me to earn a graduate degree, whereas years earlier, before my diagnosis, I’d had to leave a graduate program without the degree. The letter played a major role in helping me to get a freelance gig with a major corporation, but their awareness of my autism didn’t translate into understanding. I experienced the same old pattern of miscommunication, isolation and exclusion — one more “dream job” lost. Years later, I’m still traumatized and heartbroken over the experience. I know I have much to offer, but don’t know how to be the “perfect fit” that employers want. In general, I’ve had better luck with smaller employers, but I’m always nervous about that one slip-up that will steer me out the door.
– Submitted by Lyn Miller-Lachmann on Facebook.
Enjoy Those Smells
I have an unusual disability, I’m anosmic. After my olfactory meningioma tumor was removed, I lost my sense of smell. While I would say that as disabilities go, this one is not too hard to live with, it’s amazing how many people tell me “it’s nothing” or even “you are lucky.” It took me two years to get over the shock of the loss of my olfactory window on the universe. Eating, playing or just taking a walk down the street after a spring rain are not the same, not to mention losing the unique smell of my loved ones. Odors are emotional, which is why we are uncomfortable talking about them. Enjoy those smells, the nasty with the nice, you don’t know how lucky you are.
– Submitted by Margie Rynn on Facebook.