A few months ago, Vi La Bianca, a previous guest writer for my blog Yopp, invited me to be on her YouTube show Secular Sexuality, a show that looks at every angle of sexuality that you can think of, with an emphasis on noticing how mainstream US culture has shaped our opinions and practices around sex. I was invited specifically to discuss the intersection between sex and disability, which is a topic many people are deeply uncomfortable with.
I wanted to share and recommend this episode because, in addition to offering a lot of very useful advice to fellow disabled people and their partners about how to engage with sex and dating, a large portion of the show is devoted to discussing important issues that disabled people face in general.
This is not the first time I’ve been invited to an interview of this kind, and while my interviewers tend to be highly knowledgeable about activism and social justice, it always takes them by surprise just how much is happening within the disability activist community that they don’t know about. Disability rights are a severely neglected branch of social activism, even among some of the best and most thoughtful mainstream activists.
So, if you’re looking to get a glimpse into this world of issues as well as a lot of information specifically about sex/dating and disability, I highly recommend watching this really fun and educational episode! The video is one hour and thirty-six minutes long, including two live callers who share their experiences of how disability affects their sex lives. Not Safe for Work themes and language are also covered.
how we can improve the amount of access available to disabled people
ADA violations and the lack of input from the disabled community on accessible design
the intersection of being a woman in addition to being disabled/chronically ill
the hurdles of navigating the medical system (primarily regarding the US)
disability representation is fiction and media
Disability and dating/sexuality
the difficulties of dating while disabled
the issue of disclosure (”coming out”) as disabled
cultural resistance to the idea of disabled people having sex
the fetishization of disabled people
exploring your sexuality as a disabled person
communicating with your partner about how your disability will impact your sex life
putting your needs and physical safety first
You can watch the episode, for free, below. Enjoy!
If you are viewing this post from an email subscription, you may have to link through to the site to view this video.
Kella Hanna-Wayne
KELLA HANNA-WAYNE (Yopp!) is a member of The Zine core team and a co-host of this month’s blog series on illness and disability. Kella is a disabled, chronically/mentally ill freelance writer who is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people, and reducing oppression; and for GlutenFreeNom.Com, a resource for learning the basics of gluten-free cooking and baking. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and is forthcoming in a chapter of the book Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities. For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.
He came into this world with an innocent spirit but with a physical condition, recognized as ‘Development Disability’. At that time it was commonly called ‘Mental Retardation’, which meant anyone suffering from it would be having difficulties in certain areas of life, especially in “language, mobility, learning, self-help, and independent living”.
A helpless human being born in this world with an innocent soul, oblivious to life’s reality, unaware of its purpose, totally unconscious of self but for the fulfillment of the basic need for food and strangely, of extreme sensitivity to music. The tunes that caught his fancy would excite him to the point of screaming that gradually melted into crying and, after long hours, would end by fatigue and sleep.
Everyone at home loved music. Father had quite a collection of 75 rpm records and a stylish Grundig record player which would be attached to the radio. Almost every evening there would be a half-hour music session before dinner was served.
My earliest memories are of joyful moments when he was born. Good looking, with dark eyes, long eyelashes, adorable face specially when it broke into a smile, but something was very odd about him. I could not understand just what at that time. Two years old but hardly able to sit: “when will he play with us? Why doesn’t he speak ?” The only answers were “with time dear” and “in due time, he will.” We would run off and get busy with our own games and books, accepting the quietly given explanation.
When he was five, he began to sit, but still no speech, nor play, nor self awareness. He would sit on the tricycle but could not pedal or ride. With time he learned to stand and one day took a few steps. Soon with the support of the wall he began to walk. Still no speech. Fits of laughter began to occur and would end up in screams. Lying on the floor nothing would stop the screaming untill time brought an end to them.
He never knew he had a name. He was not conscious of t parents, siblings, or anyone else. He had no idea of day or night. When he started walking he was not aware of the way to go. Once unnoticed he walked out of the gate and onto the road, he was almost run over by a passing vehicle. He was hit and the fall broke two of his ribs. It was a painful time for him. From then on he had to be strictly monitored and often in a bolted room.
With passing years the truth of his never getting well and normal was accepted. He would never be able to converse or take care of himself. He needed constant vigilant care for falls or injuries, for safety against electric wires and shocks, for all sorts of dangers. There was no end to care as he was alive in a world of his own. Parents did all they could. No medicine would work.
Hunger is a strong instinct. He would reach out and hold the arm tightly of anyone close to him at that moment and would push that person towards the door of the room.I t was a clear indication that he was asking for food, but he had to be fed. He could not hold a spoon or a cup, nor a biscuit nor a piece of bread. Sometimes the morsel would get stuck in the throat because it was not properly chewed. Panic would result. Fortunately the first aid of patting on the back would work.
He was not aware of the dangers of injury. Once, in a fit of laughter he clutched the electric extension wire on the floor and let out a loud scream, by the time the connection was cut his hand was burned, the flesh cut and bleeding. The wound healed but the hand could not be normal again. The need for constant vigilance kept the whole family alert. The risk of leaving him alone even for a few seconds was profound and life threatening. One aspect in his personality was that he was a docile human being. Nonviolent.
A newly established state had very little health care or disability support centers for special-needs children or adults. Tariq ,as he was named would live in his own home, which for the family became a guarded place. Fear concern and worry prevailed, only prayer would bring some solace and strength to the heart. One can never fully understand nor find any answers. The truth is with the One Power Almighty.
Disability of all sorts needs constant care comfort patience respect and love. May Allah the Most Gracious and Most Merciful save and protect his people on this beautiful Earth and May all be blessed with the best of health and happiness.
Thanks to the support of my world-class son and a stellar medical team, I’ve lived for about two decades past my original medically predicted expiration date. Every year or so I feel compelled to get on my soap box – though the topic is off-theme for my poetry site, The Poet by Day – about lung disease, its increasing prevalence, and its debilitating effects. This post was originally written in 2016 for The Poet by Day. At that time, I needed oxygen for activity only and carried a small tank or two in a backpack as above. As expected, over time the disease progressed and years of insufficient oxygen resulted in other complications: pulmonary hypertension and right-sided heart-failure. These are further complicated by a rare blood cancer (not curable but managed). These complications result in my being home-bound and often bed-bound for days.
I am now on high-flow oxygen (15 liters) 24/7 and am attached to two linked stationary oxygen concentrators at home and have large portable tanks for doctor visits and to get around the senior housing facility that is my home. These are moved around with specially-designed carts. My son must come with me to doctor appointments because it takes four tanks per trip, which is too much for me to handle on my own.
At the time in our history when we started to see nature as something apart from us, when we gave up our shamanic instincts and in our hubris separated them from our growing science, when we devolved from stewardship and one-with to ownership and power-over, we set ourselves up for a world of multifaceted pain and disruption. One result in modern times is environmentally induced disease caused by xenobiotic substances that result in cancers, autoimmune disorders, and interstitial lung diseases (ILDs).
My concern here – as a powerful and noteworthy example of the impact of industrial pollutants and of wars and other violence to the earth and its inhabitants – is interstitial lung disease. I have hypersensitivity pneumonitis, an ILD that can be caused by smoking. I am a lifelong non-smoker. Everyone – EVERYONE – is at risk of ILD, smokers or not, and so are other animals. We know that in the United States and England alone, the numbers suffering from ILD are growing. No matter where in the world we live and what we do for work, we all need to recognize and acknowledge this as part of the complex package of environmental injustices.
Our lungs are the only organs that are exposed and immediately vulnerable to industrial pollutants and inhaled chemicals, dust and other particulate matter in the air. One study tells us, “Lung cancer is the number one cause of cancer-related deaths in humans worldwide. Environmental factors play an important role in the epidemiology of these cancers.”
Consider the two hundred ILDs: These are diseases that affect the tissue and space around the air sacs (alveoli) of the lungs resulting in scaring (fibrosis). We – and other animals – can’t breath through scar tissue, which is not permeable. Hence the exchange of carbon dioxide and oxygen is inhibited. The result is a slow, horrifying and painful death by suffocation. This is mitigated for people like me who have access to healthcare, supplemental oxygen and medications like prednisone and mycophenolate mofetil and, when the time comes, palliative care and ultimately hospice. People living in poverty, in war-torn areas or working at risky occupations in third-world countries, get no such relief and no palliative care is available to them in the final stages. This is unimaginably cruel.
While the most common interstitial lung diseases are considered idiopathic, they can result from exposure to certain chemicals– including medications – and from secondhand smoke and occupational exposure to agents such as asbestos, silica, and coal dust. They may also evolve from an autoimmune reaction (hypersensitivity pneumonitis) to agents in the environment, some of which might be naturally occurring and benign for many people.
Forbes Magazine cites lung disease as one of the continuing legacies of 9/11, the result of “toxic collections of airplane fuel, asbestos, fiberglass, metal, plastic, garbage, waste materials, fecal material, human remains and who knows what else.” In reading this description, one can’t help but think also of the people of Syria and other regions of war and conflict. It is not uncommon for soldiers returning from war to report newly developed respiratory disorders.
Industry, war and conflict, greed and denial, all combine to put the very ground we live on at risk, the air we breath, and the precious functioning of our lungs … We rightly worry about and advocate for issues of deforestation, pollution, hunger, dislocation, destruction of property and other issues of environmental injustice. Not the least of our motivations, concerns and advocacy must be for the sake of our lungs. It’s a fight for the very breath that enlivens us.
Down the hall from
my hospital room
a man’s voice sings
the blessing for Shabbat
wine.
I see out
my door
what’s left
of thin hair
a pink hospital gown
hands holding
the wall
as an old woman
peers round the corner.
When the man
finishes
she stumbles
back to bed.
—Michael Dickel
21 June 2019
My journey to identifying as a disabled person was anything but clear cut. Before the injury that flipped my life upside-down, I thought that my pre-existing health issues were within the range of normality. And once it was discovered my sudden uptick in pain was injury-based, I had no reason to believe that my injury wouldn’t heal in a timely matter. Most of our exposure to the world of disability tends to be what we see in TV and movies, and every fictional character I knew of that ever contracted a serious illness or sustained a severe injury always overcame their obstacles and recovered 100% (or they died). The idea that your body could be physically impacted in such a way that you may never fully recover or the recovery takes place over 5-10 years, never occurred to me. I assumed my issue was temporary.
And when I did eventually begin playing with the word “disabled” to describe myself, I received a lot of resistance from the abled people surrounding me. They would say things like, “Do you really see yourself that way?” or “But you’re so much MORE than that,” as if calling myself disabled was inherently a more self-limiting description than calling myself a brunette. I was discouraged from claiming a label that ultimately became a key aspect of my identity.
The truth is, I had absorbed many of the mainstream beliefs about disability that all of us learn, and I had to find out the hard way that they were untrue. These misconceptions inhibited my ability to accurately describe myself, to be proud of who and what I am, and they actually prevented me from accessing the help I needed.
Expanding Your Understanding of Disability
One of the biggest misconceptions about disability that I was implicitly taught is that when you become Disabled, you are entered into the Official Disabled Club and it will be clear and obvious to everyone around you that you are a Disabled Person. (Spoiler alert: This does not happen.)
Our culture sees disability as something concrete and binary which is weird because bodies are incredibly complicated. Pretty much any function of a human body can manifest with a variation that’s extreme enough to be disabling, either due to the severity of the dysfunction or due to the symptoms’ incompatibility with society’s expectations around how people should move through the world.
Just one presentation of disability can actually represent a huge range of levels and types of ability. For example, there are literally hundreds of reasons you could require a wheelchair: pain, muscle weakness, lack of bone density, fatigue, unstable blood pressure, dizziness, paralysis, amputations, temporary injuries, recovery from surgery, the list goes on. Some people need a wheelchair for those issues 100% of the time, other people need one only when their symptoms are severe and can walk the rest of the time, and yet other people only need them when they’d otherwise be required to stand for more than an hour at a time. “Wheelchair-user,” which is just one disability in society’s eyes, is actually hundreds of different disabilities.
A young person wearing blue jeans and blue and white polkadot sneakers walks casually beside a person sitting in a wheel chair, holding a cane, as if they are enjoying an afternoon together outside in the sun. Photo courtesy of klimkin, Pixabay.
But our binary ideas about how disability presents itself means we struggle to identify disabilities accurately. Ambulatory wheelchair users– people who use wheelchairs but are able to walk some of the time– are regularly accused of faking because instead of recognizing the wide range of conditions that wheelchairs are used to accommodate, many people have the misconception that either you need a wheelchair 100% of the time or you never need it. Abled people expect disability to present in a very specific way and anything that varies from that 2-dimensional description is treated with dismissal.
Overall, our definition of what “counts” as a disability, is very limiting and we’re quick to categorize conditions we don’t understand as not “real” disabilities. Conditions like chronic anxiety or ADHD are rarely thought of in these terms, and even people with visible physical disabilities struggle with being recognized as disabled enough.
Because what we’re really categorizing is not disability at all, but whether it’s okay for someone to ask to be accommodated. “You’re not really disabled” almost always means, “You don’t actually need help with what you’re doing.” If culturally speaking the general consensus is that you should be able to cope with a physical/cognitive issue without help, then we’re discouraged from seeking it and shamed for “pretending” to be disabled in order to receive special treatment.
The result is that many versions of disability are hidden from mainstream awareness, and millions of people that would live easier and happier lives if they were given accommodations or life adjustments are forced to go through unnecessary hardship.
You Don’t Have to Do Things the Hard Way
Prior to disability, I was already in the habit of downplaying my needs, and given this cultural backdrop with which we view disability, I was very slow to embrace the word “disabled” and the implied necessity for assistance that went with it.
At the time, the idea that if at all possible, you should do something without help, was such a normal part of the society around me that I didn’t recognize how illogical it was. While there are certain forms of access like accessible parking spots or restrooms where there is a limit to how many of those resources are available, there are so many forms of assistance that are not limited.
But we force this contrived scarcity mindset to all sorts of things: It took me weeks of suffering through the pain of walking on a recently-injured ankle before I realized there was no reason I shouldn’t ask for a ride or take the bus to work. No amount of saying “It’s only five blocks!” would change how resource costly it was for me to walk or how much pain I was spared by getting a ride.
Joining the disability community opened my eyes to a world of possibilities for adapting your life structure to fit your own needs. Even though I originally resisted joining the community, once I recognized that my set of physical conditions did count as a disability, accepting the identity actually validated that yes, I really did need help, I really did need adjustments to my daily life that were counter to the average American’s lifestyle in order to be the healthiest version of myself. Saying I was “disabled” became a way to make those needs more real to myself.
How Are We Defining Disability?
There is an underlying problem behind all these cultural misconceptions about disability, and it’s rooted in how we define what it means to be disabled.
The primary definition we have in our culture is called the medical model of disability. In the medical model, a disability is defined by a defect, a flaw, an abnormality, a lack of something, that interferes with your ability to function in everyday life. In the medical model, a disabled body has something wrong that sets it apart from the default body, which is a healthy abled body. (Note that “body” in this context also includes cognitive function and mental health.)
According to this model, if I call myself disabled, I am saying that there is something wrong with my body. I’m saying that my body is fundamentally lacking in something that normal bodies have. And it’s extraordinarily easy in our culture that moralizes health to conflate, “something is wrong with my body,” with “something is wrong with me.”
Introducing the Social Model
To combat this stigma, the disabled community created a new model: The social model of disability essentially says that disability is not caused by a problem with your body, but an incompatibility between the way your body works and the way society is structured. If disability is defined by the level of difficulty you have navigating the world around you, it stands to reason that the nature of that world is going to impact the severity of that difficulty.
The social model is all about identifying the external structures that are making something difficult for a given person and changing and adapting them so that the level of difficulty decreases or even disappears. For example, the popularity and ease of access to eye-glasses and contact lenses means that we can effectively remove a vision impairment that 200 years ago would have been debilitating.
(Note: There are varying opinions on whether it’s best to use a combination of the social and medical model, or to define the social model not as eliminating disability but as accommodating disability to the fullest extent that is possible for a given condition or environment.)
A woman riding a red motorized scooter has to duck down uncomfortably low to get under a wooden plank blocking the dirt path unnecessarily. Photo courtesy of makeitsomarketing, Pixabay.
But many disabilities require a more in-depth look at our society’s structure to achieve accommodation: I live in a society where the default expectation is that I need to work for money so that I can pay my basic expenses, and on average, it will require 35-40 hours of work a week to make enough money to pay those expenses (This summary is extremely oversimplified and outright incorrect in many cases, but this is the general belief about what’s normal in our society.) The work I do is also expected to be at a location other than where I live and in most cases, includes doing a handful of the same tasks over and over again.
None of these constructs are inherent to human society, they’re just what’s normal for this time period and the part of the world I live in.
But the nature of my disability means that I can work a maximum of 20 hours per week, my expenses are higher than average thanks to additional healthcare costs, leaving the house is particularly resource-costly, and repetitive tasks fatigue my muscles very quickly. If I were to work a “normal” job and pay my bills like a “normal” person, my pain and likelihood of injury would be so high, I would need significantly more assistance, and my health issues would compound on one another. My disability would get worse.
However, if I’m allowed to work part-time, at my own pace, from home, doing a variety of tasks that use my body in different ways, my health and productivity both improve. My pain decreases, I have more energy, and I’m overall a happier person. I am significantly less disabled when my life structure is compatible with my physical needs.
The social model takes the focus away from trying to fix a disability and instead puts it on improving a disabled person’s quality of life. For me, it dramatically changed my understanding of what a disability is and how I define it: A disability is anything in your mind and/or body that inhibits or prevents you from engaging with basic aspects of society– work, relationships, hobbies, meeting survival-based needs– as a result of a society structured around the habits of the majority.
Using the social model also puts focus on one of the most important aspects of the identity of being a disabled person: the virtue of adaptation.
An Identity of Adaptation and Creativity
If you join the disability community on twitter, you’ll notice the majority of folks there will include “disabled” or the blue “accessible” icon in their bio. But more than once I’ve seen abled people object to this: “You base your identity on your disability? What a depressing outlook on life!”
If you’ve only learned the medical model, letting your disability define you sounds like you’re saying, “There’s something inherently wrong with me,” or “My life is filled with things I can’t do.” From that perspective, disability as an identity is depressing.
But to be a disabled person means to navigate a world that was not built for you. You’re playing the game on hard: extra obstacles, fewer power-ups. You are constantly planning for contingencies, advocating for your basic needs to be met, assessing and adapting your choices in the moment when the available pre-set options are not options you can use.
Being disabled means looking at your environment and being able to pull back the veil of assumptions about what it means to live a “normal life” and challenge them. Being disabled means rejecting the default and saying, What if we did things a different way?
If I visit a fellow disabled friend’s house, I can count on them to anticipate my needs and ask the right questions to make sure that I am happy and comfortable, even though demands on their resources on average will be higher than the demands on an abled person. An abled friend, other the other hand, usually requires a crash-course on how I need to be accommodated and what I can and can’t do before they can effectively be my host (and they likely won’t initiate this crash-course, which means I have to do it pro-actively).
A group of friends hang out and take selfies at a bar while drinking beer. They have a variety of skintones and forms of disability, both visible and invisible. Photo courtesy of Elevate, Unsplash
It was the disability community that taught me to adapt my life to optimize it for my needs, to prioritize my own well being over the social expectation of what a life should look like. My disability impacts my career choice, my relationships, my hobbies, my activism, my relationship with myself, my understanding of the world around me. My disability is an integral part of my identity and that is not a sad thing in any way.
Because being disabled involves an exceptional level of creativity, innovation, adaptation, decisiveness, solution-seeking, thinking one step ahead, and changing the status quo. When I say that disability is part of my identity, I’m saying that I’m part of a group that shares this unique set of skills and this specific outlook on life.
With such an incredible set of qualities, why wouldn’t I want to identify with the community responsible for teaching me that my needs will always be worthy of accommodation?
Kella Hanna-Wayne is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people and reducing oppression. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and her work is forthcoming in a chapter of the book “Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities.” For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.
This article was cross-posted on yoppvoice.com on February 8th, 2020.
my grief
in listening to music that I cannot dance to
is just the feeling of my heart leaving my body
as it soars across the dance floor
begging my feet to follow
it is the same pleasurable agony
of missing the one you love,
my brain places each step
and says oh!
wouldn’t it feel good to move this way?
naively seeking a reunion
that will never arrive
but my affair
with listening to Pugliese,
the beast of the tango world
that dancers study for years to master,
is like having my body hurled across the room
against the walls
against the ceiling
it screams why
aren’t
you
dancing
you
will never be enough
you
are
not
worthy
And yet I return to it
to be thrown again
and again and again
a fractured soul
with a battered body
returning to her abusive lover
“Photography. It’s like music … It’s like your favorite song, something you can listen to over and over and over again. You try to explain it to some and you can’t. That’s the feeling it gives me. It’s like traveling and you want to tell everyone how great it was … and I have that experience every time I pick up a camera.”Wendy Alger
My friend, Wendy Alger, is a talented photographer, now still active though legally blind. Wendy pursued the craft of photography as a hobby until another friend of hers suggested that she become a photographer. Wendy thought that sounded just right and a natural thing to do since both her parents were photography enthusiasts. Wendy’s dad supported her new goal and gave her one of his cameras and some lenses. And so the story begins …
At the time when this adventure started, Wendy owned an old ’68 Mustang. She’d drive around, listening to music. When something called out to her, she’d stop and take photographs. Thus Wendy began to learn what subjects appealed. “I photographed everything that felt right and compelled me to keep taking photographs.” Slowly, she discovered the artful photographer within and her own distinctive style. “I enrolled at the Academy of Art University in San Francisco and trained there, where I learned manual SLR. I also learned how to use a dark room.”
I am always surprised and delighted with the remarkable results Wendy manages despite the limitations of her sight due to retinitis pigmentosa. Quite a bit older than Wendy, I cut my own photo visionings using a Brownie and have not graduated much beyond that. My camera is digital, but it’s just a simple budget-wise P.H.D. (Push Here Dummy) camera. Wendy, however, uses newer, better quality and more complex equipment than mine and tells me that these newer technologies facilitate the practice of her craft. “I use a digital camera and I can check my pictures on the camera instead of in a dark room. Nowadays, my darkroom is a laptop, Photoshop and Photoshop Lightroom. This allows me to transform and print my images at home. I also use visual memory … I remember feeling to get through a photo session.”
Wendy’s long-term goal:
“To have my artwork displayed in the same building as Walker Evans in my lifetime – not after – during! My vision problems are not stopping me. I never even think about that. After I was diagnosed and as soon as I got the money I bought my digital camera.”
Here is a small gallery of Wendy’s recent work with a digital camera. The photo at the head of the post and the first one below are self-portraits. Wendy’s photographs are copyright protected. You can see more of her work HERE. She’s now in the process of updating her site.
JAMIE DEDES (The Poet by Day)~ I am a medically retired (disabled) elder and the mother of a married son. The graces of poetry, art, music, writing and reading continue to evolve as a sources of wonder and solace, as creative outlets, and as a part of my spiritual practice. My Facebook pages are: Jamie Dedes (Arts and Humanities) and Simply Living, Living Simply.
The photograph to your right, Portrait of a Photographer, whichsome will recognize as the photo I used for Wordless Wednesday, is a portrait of Wendy. I guess it might be more correct to say it’s a portrait of the camera not the photographer, though it was meant to capture the spirit in which Wendy works. I took the photograph some years ago when we spent an afternoon at Union Cemetery in Redwood City, Wendy pursuing art and me as chauffeur and tag-along doing the best I could. My own portrait here is a selfie captured using the photo feature on my MacBook. Happy interNational Photography Month.
Today is Blogging Against Disabilism Day. Disabilism is a Gimp term for the ideology and practice of discriminating against people with disabilities. Discriminatory practices of all forms appear to be on the rise in North America. In the U.S., where all programs that protect minorities are under attack, there has been a growing chorus of calls for the dismantling of the Americans With Disabilities Act.
Contrary to much of the Disabilist propaganda, life remains very difficult for most people with disabilities. Much architectural infrastructure remains inaccessible, and the unemployment rate for persons with disabilities is double the rate of the non-disabled. It is likely most people with severe disabilities have given up looking for employment and are thus not counted amongst the unemployed.
The 90’s were, throughout the Western World, a time of disability activism. In the U.S., many of the activists were Polio survivors. At the time, the everyday world was, far much of the disabled community, simply inaccessible. If one used a wheelchair, one simply could not get on a bus! (The playwright and disability theorist, Kaite O’Reilly recently discussed both the disability civil rights movement in the U.K. and the workings of Disabilism in a marvelous lecture. I encourage you to watch.)
Until our civil rights movement, people with disabilities were largely invisible. When I am in a wheelchair in a crowded space, say a museum, I remain invisible, as people literally trip over me. When I am in India, I am a very visible anomaly: a professional person navigating the world on crutches. (An Indian colleague recently told me that disability cannot be discussed at the moment in India. It is too hot a topic.) Most disabled people in India stay home.
Back in the early 90’s Bill T. Jones, the MacArthur Award winning choreographer, created a piece entitled, Still Here. The dance gives expression to the lived experience of persons with life threatening conditions, including disabilities. It created a furor! In 1997, Bill Moyers interviewed Bill T. Jones about Still Here. It is one of my favorite hours of t.v.. Not long ago I wrote a post about Still Here and its continued resonance for Native people and folks with Disability. The sad thing is that there are a great many people in North America who would like us Gimps and Natives to be gone, or to at least stay home and out of the way.
Beyond the idea of Disability as label or stigma, is Disability as lived experience. I have spent much of the past few months addressing Polio related issues. Working with a Polio knowledgeable therapist has helped me revisit the illness and its aftermath, understand some of the new challenges I, and other Polios, face, and acknowledge some of the losses associated with Polio. The therapist has given me information to read and poked sore areas of my psyche with skill and kindness.
I am deeply appreciative of the resources, kindness, and training she, and other Polio clinicians have showered on me. I am also grateful to all those who helped me understand the ways the trauma of Polio, and the able-bodied gaze, have shaped my thinking and life. At times. I find myself both relieved and filled with sadness and grief; there are so many losses.
There was a time when I was able, a before and after Polio, although that was many decades ago. My therapist likes to remind me that those without disabling conditions are temporarily abled; disability is always possible. Perhaps that possibility keeps many anxious and avoidant of persons who are clearly disabled. One may pass but probably one cannot hide from one’s disability or from the losses it brings to life. Nor can one hide from Disability itself; Disability stalks everyone.
Oddly, I have the sense of Polio as present and immediate, even in a world where it is thought, like winter’s snow, to have melted away almost to extinction. Polio is a virus, a piece of RNA that infects cells, reproduces itself in enormous quantities, and leaves the cells weakened or dead. It can present as little more than a stomach upset, or leave a person paralyzed or dead.Whether we acknowledge it or not, Polio remains an active presence in our world, especially in the lives of survivors and their families.
As I write, a flock of geese flies over, headed north, and the radio news announces a polio outbreak in Afghanistan in which at least 25 persons have been made ill. I have been rereading Anne Finger’s Elegy for A Disease, and the book lies open on the sofa. It is both a personal and a social history of the disease, an illness with a long history of influencing human lives. I have the sense Polio is sitting with me as I write and ponder, an alive, thoughtful presence, vibrant and well in spite of our efforts to eradicate it. Polio doesn’t seem to be going anywhere.
We Gimps are Still Here as well. We, too, are not going anywhere.
– Michael Watson, Ph.D.
IMPORTANT NOTE: In acknowledging of this day, its importance, and of the challenges disability bring to the lives of the disabled and their families, we are opening Mister Linkyfor you to share links with us and with readers to your own posts on disability or to a post you’ve read that has moved you to a greater understanding. These do not have to be recent posts. As an alternative, please feel free to leave a link in the comments section.
MICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.
He sat on the sofa, pulled deeply into himself, almost disappearing before my eyes, as he told me about his dad’s violence. I wondered whether he knew I was in the room with him. “I feel terribly fragmented; I don’t know who I am,” he explained. “I can’t remember ever being like everyone else; they seem so at home in themselves.”
One of my teachers, a Psychoanalytically oriented clinician, always said the real problem is the second trauma. Her view was the first trauma one encounters sets the stage for PTSD and related problems; the second trauma triggers the cascade. Repeated traumas in childhood physically alter the function of the developing brain, leaving one more vulnerable to new trauma. Even if only one trauma occurs in early childhood the person may remain susceptible to PTSD via a second trauma as an adult.
The other night I had dinner with friends. After a traditional ceremonial meal, we watched Skins. I have read about the film, heard others talk about, and planned to watch it, for a long while. The film follows a few months in the life of a tribal police officer on a fictional reservation much like Pine Ridge, and weaves together myth and contemporary experience, violence and healing. Early in the story we are reminded that although humans like to think they are in charge, the spirits shape everything.
Earlier that day I had sat in a local bakery with a couple of medicine women, discussing a Medicine Wheel ceremony we are to hold next month as part of a conference honoring aging. As we come from different traditions and teachings it seemed important to all get on the same page. It turned out we were already in agreement, so the planning went smoothly.
Later, as I thought about the film and my delightful hour at the bakery I decided PTSD (Post Traumatic Stress Disorder) might well live in the North, the place of night and winter. Fortunately, the North is the home of the Ancestors and the place we seek vision; in winter there is little haze and one can see clearly for a long way. The North is often a place where the spirits seem more immediate and accessible.
As the police officer in Skins discovers, healing from PTSD takes patience and courage, and may involve the workings of mythic beings. When we seek a healing for PTSD, we can request guidance from both our unconscious and the spirit world, asking them to give us manageable amounts of information regarding our traumatic experiences, and to aid us find new, more life nurturing, meaning in those experiences. Healing PTSD may become a vision quest, very like going alone to ask the ancestors and spirits to aid us and our communities, to bring us a vision we may live by.
Of course, we are not truly alone. Whether we are challenging the domination of PTSD in our lives, or praying for a vision, there are others, human and spirit, supporting us. We are blessed by the knowledge and caring of those who walk with, and pray for, us, and we benefit from their experience and companionship. Still, they cannot make the journey for us; we must each walk the healing road for ourselves.
As we walk sun-wise around the Medicine Wheel we discover that when we stand in the North the path before us faces East. East is the place of birth and rebirth, the home of insight and understanding. It is also the place, in the view of many Indigenous cultures of the Northeastern U.S., where we pass into the spirit world. Sometimes facing long-held trauma brings us an intense fear of death; indeed, the journey from the North to the East is fraught with both danger and promise.
When we go alone to seek a vision, or begin the journey of healing from PTSD, we benefit from telling our families and friends, asking them to pray for us, help us prepare, and honor our return. For many, requesting support when healing from PTSD seems shaming; often asking for aid requires as much courage as does confronting PTSD itself. Yet healing seldom happens in a vacuum; we each need the support of others in our lives and on our healing journeys. Let us honor the courage of those who ask for our aid.
Healing PTSD, like any vision quest, is not for the faint of heart. On the journey we need courage, perseverance, and compassion for ourselves and others. It is a good journey, holding the promise of healing, renewal, and vision, for Self, family, friends, and community.
MICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.
The Olympics have come to a close; the Paralympics follow. Saturday evening Jennie and I watched a Gimp DVD. She is planning to show it to her Expressive Therapies class, along with some material from Bill T. Jones. Its been a while since we last saw Gimp in performance so revisiting their work was a revelation.
The Paralympics is a much-needed, if under-reported competition for athletes who happen to be disabled. The Gimp Project is a collective of dancers, able-bodied and disabled. The Paralypics is a contest; Gimp is a collaboration exploring the world of disability experience. The first seeks perfection, the latter revels in the beauty of imperfection. The Paralympics pursue inclusion, abet separate and unequal; Gimp tells stories, often casting light on the processes that marginalize and exclude.
There is a remarkable invisibility surrounding these processes, although many activists, academics, and artists have sought to illumine them. It matters little whether these forces exclude persons on the basis of ethnicity, race, disability, or other difference, the effect is consistent. The systems are pervasive and largely invisible; they are also profoundly human.
The Medicine Wheel holds all of human experience, offering us a view of life as a whole. There is a place on the Wheel for everything that can be encountered, even a space for our collective fear of otherness and contagion. The Wheel reminds us that we will each encounter all that is, whether directly or through the experiences of others. Our fates are inexorably woven together; the fate of each is that of all.
As we meditate on the Wheel we are encouraged to consider that while they seem real, both safety and isolation are illusory, transitory states. The last few months I have found myself wandering the wilderness that is part of the Post Polio experience. Recent health concerns continue to bring up ancient unresolved feelings, along with worries about the future. I have been repeatedly thrown back to the fear and pain of the acute illness and post-illness recovery, and the social isolation imposed on me as a Polio. I am also reminded the effects of the virus continues to impact my life and thus the lives of those I hold dear.
I’ve been exploring the experience of Post Polio through the wisdom of the Wheel. For me, now, Post Polio lies in the North, the place of aging, teaching, and eventually, making preparations to return to the Spirit World. (The North is also the place of preparation for rebirth!) The journey is complicated as I find myself trying to make sense of my nearly lifelong disability from a place on the Wheel where it is also my task to embrace a declining body.
Part of the task is to acknowledge my fear of erasure. We live in an epoch in which Polio was eradicated; we are, for most purposes, a Post-Polio world. I was taught I had survived the virus and should get on with life, ignoring, as much as possible, the devastation to my body and psyche. Yet the path of forgetting and ignoring is fraught with difficulties; the way of assimilation or “passing” is thorny. The normative prescription offers the possibility of inclusion, yet to follow that road is to participate in a collective act of erasure, to become invisible, and thus lose Self.
Every human being comes to a place where s/he is vulnerable; each of us eventually faces the treat of erasure and the powerful emotions that accompany that threat. In a culture addicted to perfection, and dismissive of difference and need, such moments carry added fear and shame. How odd such an essentially human experience is marginalized, leaving so many to face the North filled with loneliness and dread.
As a society we increasingly relegate the task of accompanying folks on the journey through the North to the health care profession and the clergy. As a result, we have marginalized the insight and wisdom that may accompany disability, experiences of trauma, and aging. In doing so we create great suffering for the very young we profess to idolize, for we deny them context. How are they, in the face of ceaseless messages about the centrality of competition and perfection, to know they are all loveable, all sacred, beautiful, and desirable in their humanness and imperfections?
Our collective focus on perfection sells products and drives our economy, yet blinds us to the fate of our neighbors and the world. Our deeply held collective desire for safety encourages us to abandon our elders, young people, and children, threatens our very being as a species, and steals our Souls. Still, as prophesy insists, we have options. We can risk relearning the wisdom of the elders, symbolized by the Medicine Wheel, accept the complexity and terror of being human, and journey together into a Sixth World. There are, if we make it so, seats for all at the table.
MICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.
Editor’s Note: This is the first of a two-part piece on Perfectionism originally posted on Dreaming the World. Part II will post here tomorrow.
I am an elder, and as such I am given the task of teaching and supporting the young. On the Medicine Wheel of this lifetime I am in the Northwest, the place of honoring the challenges of my life, understanding them as best as I am able, and sharing what I have learned with others. Perhaps you will share your thoughts about the experiences I share below; I would greatly value that.
We, along with many others, spent a good deal of time during the past two weeks watching the Olympics. Over time we noticed, especially from NBC’s coverage, that the commentators seem to believe winning and perfection were all important. This is a sad thing. One does not have to watch much before one becomes aware the announcers are ceaselessly pointing out errors and failures. Rather than empathy for the competitors, one is barraged with demands for perfection and minute details about failure to achieve such. There is very little celebration of the athletes who fail to meet the announcers’ or judges’ criteria.
This hits home on two fronts. The first is cultural. I was raised to appreciate the efforts of all. Winning is fun, but should not shame others. Nor should anyone be left behind after the games are over. Further, perfection was considered suspect. One was advised to build imperfection into one’s art and welcome it in one’s life. After all, we are not the Creator although we are aspects of His/Her creation. Only the Creator can be perfect, and it is likely even S/He makes mistakes; as we are reflective of the Creator this suggests that even mistakes can be good and holy. The unbridled pursuit of perfection endangers the individual and the culture, the community and the ecosystem.
The second part is I am a survivor of Bulbar Polio. My phsysiatrist says I am “a walking quad”; rather than disparaging, this is a simple statement of truth. I have severe neurological injuries; Polio destroyed motor neurons all over my body. My arms and hands have considerably diminished capacity; my legs and feet lack strength and mobility; breathing can be a challenge. I am not perfect by the dominant culture’s standards.
Add to this my Native American heritage and the soup becomes thick indeed. I once heard a man, who understandably thought he was with other Europeans, say something like, “There is nothing more pathetic than a disabled Indian.” What are we to do with that? Indeed, what are we to do with NBC’s virtual silence on the topic of the Para-Olympics?
Herein lies the difficulty. One one hand I was encouraged to accept and honor imperfections. On the other, as a Polio survivor I was taught to do my level best to pass as normal, to overcome limitations, and to forget my illness and its aftermath. Additionally, as a child in a Native family that was actively passing, I was taught to be invisible, a lesson that surely applied to Polio as well.
It is a profound challenge to resist the limiting messages of our families and the dehumanizing ones of the dominant culture. I have done my best, yet I have also spent much of my life seeking to achieve others’ views of perfection, even though not even normalcy was not an option.This has been painful.
I don’t know whether you have ever thought about the Wounded Healer. In Traditional cultures ill youngsters are often expected, should they recover, to become healers. I use the term “recovery” loosely. Youngsters who face and survive catastrophic illness may not have the same physical capacities as their normative friends. Yet their illness may also give them abilities and insights not readily available to others. When the child is ill the healers do their best to aid. They also seek to discern the nature of the illness; often such illness are understood to be calls from the spirits, initiations into the realm of healers. When there is a spirit call, training in the healing arts accompanies recovery. The illness frequently leaves a footprint in the life and work of the survivor; he or she becomes a wounded healer, knowledgeable about many of the territories and challenges that accompany illness.
This is a different model than the academic learning focus of the West. Of course, the two paths are not mutually exclusive. Indeed, they may intersect, even overlap at times. Both address the needs of the body. Some Western trained healers have adopted the Indigenous understanding that the soul and psyche must also be attended to. (Milton Erickson, although not to my knowledge Indian, comes to mind as someone who walked both roads well.)
I have come to this point on the Medicine Wheel by living my life from within this severely injured body. This is a sharp contrast to the physically perfection of elite Olympic athletes, or the health and wealth gurus we see on PBS and on innumerable infomercials. The television sages convey the message to us that illness, poverty, loneliness, and all other forms of suffering are moral failures. They do not speak this directly, rather they hold up their carefully managed perfection as a mirror to our human frailties. They offer advice, even salvation; for a fee we can be just like them. But I, and many others, cannot. The very lifestyles they espouse harm us, and endanger our precious planetary ecosystem and all that lives therein. Where, I wonder is their wisdom and compassion?
We approach the Spring, the East in the Abenaki view of the Medicine Wheel, the place of rebirth and awakening. I am curious how my changing understanding of this beloved, traumatized body will blossom in the coming year. I wonder whether our culture can set aside the deeply held values of independence, competition, and perfectionism that shaped the our country (the very ones espoused by those television commentators). Can we own our imperfections, and acknowledge the harm we have inflicted on ourselves and so many others, inside and outside our country? Can we embrace those who suffer illness, poverty, displacement, abuse, or isolation?
As we follow the journey of the sun into the East, we are invited to begin again, to open our eyes and practice compassion and understanding. May we find the courage to do so.
MICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.
Heather Von St. James is an eight-year survivor of mesothelioma – a rare cancer caused by asbestos exposure. She initiated Lung Leavin’ Day to encourge people to face their fears, whatever those fears might be. Together she and Jamie Dedes share some of their experiences with and victories over Interstitial Lung Disease (ILD) and encourage you care for yourself.
“Breathing involves a continual oscillation between exhaling and inhaling, offering ourselves to the world at one moment and drawing the world into ourselves at the next…” David Abram, Becoming Animal: An Earthly Cosmology
Breath: So necessary to the maintenance of life and so often a metaphor for life and spirit. Every year around this time, I take advantage of my blog to change the subject and write about diseases that harm the mechanism of breath, our lungs. I don’t do this to draw attention to myself. I do it to draw attention to the lung disease. I want people to be aware because Interstitial Lung Disease (ILD) can go undiagnosed or misdiagnosed and unattended for too long adding even more devastation to what is frankly horrific.
This year I was contacted by Heather Von St. James who wrote to me saying, ” I am an 8-year survivor of mesothelioma – a rare…
Our thanks to Laurel D. for sharing Vienna Teng’s video with us …
This crowd-funded (Kickstarter) video by the remarkable singer and song-writer Vienna Teng was released in December. The song Level Up is featured in her album Aims which was released last September. In this video, Ms. Teng moves through four scenes of devastation including one featuring b-boy Tommy Guns-Ly, dancer, bone cancer survivor and amputee. Tommy Guns-ly is part of the ILL-Abilities crew.
“Originally created in 2007 with the idea of being a “Super Crew” of disabled dancers, it is now becoming a global movement helping to spread the message: No Excuses, No Limits. ILL-Abilities’ mission is to redefine society’s view of disability, promote empowerment, and encourage limitless possibilities through motivational entertainment.”
Source: Breakin Convention.
She sat there, with the precious stillness of a Tanagra, frozen beneath the cascade of magnolia petals – and all that sunrise was able to do was to jewel her aura with fiery reflexes, as if she was Amaterasu herself, borrowing for a while the limits of flesh with the sole purpose of proving the beauty of her infinity. I was unable to move, unable to make a sound, and for a moment I thought I would see her suddenly float and fly away, her body soaked with light and my eyes drained of all will to blink. Even her voice sounded as if woven from glints, when it stretched towards my senses like an invisible limb:
– The sun doesn’t always rise with the same brilliance. There are dawns when, for various reasons (all, or almost all of them of a scientific nature, of course) what you see growing above the line of the horizon is not that imposing disk of glowing majesty, but a shy red roundel, mat and exuding insecurity, as if it were born untimely from sky’s bleeding wombs. But if you stay there long enough and stare at it, you will witness the victory of plasma over atmosphere and soon the cells from your retina will be burned, as punishment for daring to assist at the visual metamorphosis of our closest star, as if your gaze would have somehow stained that moment of vulnerability…
She paused for a second – a long, ethereal, suspended on the tip of her gaze second – and then she continued:
– I’ve watched such sunrises more than just once from the window of my room. There were times when I saw the sky being flooded with raw sunlight and then suddenly a sparrow with eyes of onyx would come and sit on a branch of the elm tree growing right next to that window. It looked at me cautious, first with an eye, then with the other, and then it would suddenly release from that tiny throat a sample of happiness and freedom, as if to demonstrate me that joy can be found even in the simplest of things. It was that sparrow that taught me how to feel free, beyond the wheels of this chair, and not a sunrise goes by without me hoping you’d find your own sparrow, my son…
LILIANA NEGOI (Endless Journey and in Romaniancurcubee în alb şi negru) ~ is a member of our core team on Into the Bardo. She is the author of three published volumes of poetry in English, which is not her mother tongue but one that she came to love especially because of writing: Sands and Shadows,Footsteps on the San – tanka collection and The Hidden Well. The last one can also be heard in audio version, read by the author herself on her SoundCloud site HERE. Many of her creations, both poetry and prose, have been published in various literary magazines.
“Your mother has escaped from the facility,” said the nurse on the phone.
I was still in Sacramento. I had just thrown my suitcase into the trunk of my car, and I had wanted to call the nursing home to check on my mom and her progress in physical therapy, one last time before I left for San Diego.
“Escaped? What do you mean, escaped?”
“Nobody knows where she is, sir.”
“How is that possible?”
“It looks like she just got out of her wheelchair and walked straight out the front door, past the front desk, when the receptionist was away. We’ve called the police,” the nurse assured me.
“What did you tell them? To look for an eighty-year-old woman in a hospital gown, pushing an I.V. pole?”
“They’ll find her, Mr. Young.”
“She was supposed to go home tomorrow.”
“I guess she couldn’t wait that long.” The nurse laughed. When my silence conveyed that this wasn’t funny, she said, “Don’t worry, sir. Residents escape from here all the time. We almost always get them back.”
“She has aphasia. Do you know what that is? She can’t speak clearly, because of her stroke. She can’t tell anybody who she is or where she lives. What if she gets hit by a car?”
“We’re not liable, Mr. Young.”
“What?”
“Your father signed our waiver form, which releases us from liability for bed sores, falls, and unauthorized self-release from our facility. It’s a condition of admittance.”
“This is unbelievable. I was just about to drive down to San Diego to help my dad bring her home and start caring for her.”
“You’re aware that she’s going to need twenty-four-hour supervision in your home, aren’t you? Otherwise she might start walking around, fall down, or even try to escape from your house in the middle of the night.”
“If your entire nursing staff can’t supervise her, how in the world are my father and me supposed to do it?”
She lowered her voice. “I took care of my own mother at home for ten years, sir. I thought I was going to go completely out of my mind.”
I drove toward San Diego with my heart dropping through my chest and stomach. I had never known this much stress in all my life, not knowing where my mother was or what was happening to her. Or what would happen once we found her and brought her home. A perpetual state of emergency was becoming the most powerful reality of my life. I didn’t yet understand that accepting a continuing sense of uncertainty would become my greatest source of strength.
When I called the nursing home from two hundred miles down the road, they had found my mom. She had never made it out of the parking lot. She was walking between the cars and the SUVs, too short to be seen, until a driver just avoided striking her.
When I reached San Diego it was dark, but I went directly to the nursing home. As I hurried into my mother’s room, she glanced up at me from bed and, with the lucidity that aphasiacs exhibit when they’re surprised, she said, “Oh, it’s my son. Let’s go home now.”
I bent over to kiss her on the temple. “Mom, how are you feeling?”
“Window face,” she said, “hotel hotel hotel—and oil.” For the rest of the visit, as I tried talking to her, she replied with her enthusiastic, broken aphasia.
Sharing the room was an elderly man with a group of Mexican women sitting around his bed. My mother is Mexican, but I don’t look Mexican, so they felt free to talk about my mom in Spanish:
“That poor old woman is crazy.”
“She said she has a boat waiting for her outside. She has Alzheimer’s.”
“She ran away today. They ought to lock her up in a closet. She’ll try to walk across the freeway.”
“It’s a shame. I’m glad we don’t have that in our family.”
“It’s hereditary. Her whole family will turn out that way someday, including all of her children and grandchildren.”
Rage blackened my mind so quickly that, for a moment, I was dizzy. Although I’d never heard the word aphasia before my mom’s stroke, I was now outraged for the rights of all the aphasic people of the world, for their right to express their needs, for their right to be understood, for their right not to be falsely labeled.
Yes, my mother’s ability to process and produce language had been compromised, but she knew exactly what she was trying to say, and she could understand most of what other people were saying. She was not a crazy person, nor did she have Alzheimer’s, nor was she “demented.”
I waited until the women had left and then I kissed my mother again and told her not to worry about anything people said. She nodded with relief. “In oil, in oil. It is their face, it is their windows.”
Her spirit—the same spirit that had led her to escape from a nursing home that she did not like—was intact.
The next morning, my father and I came to take her home. Together, we cared for her for four months, until my dad had a stroke and was paralyzed on the right side. Now I had two infirm seniors on my hands.
I cared for my mom for 45 months, until she passed away in May, 2012. I continue to care for my dad every day. I’ve been a caregiver in my parents’ home for 61 months now. I’m proud that my parents have been able to live in dignity and freedom in their own home, without being institutionalized. This is the most important, rewarding, and illuminating work that I have ever done.
Any person with a compassionate heart can learn to be a caregiver. This means that you can do it too.
ROBERT CLARK YOUNG ~ is a guest writer on Into the Bardo. He has worked as a caregiver in his parents’ home since 2008. “Escape from the Nursing Home” is excerpted from his book, THE SURVIVOR: How to Deal With Your Aging Parents, While Enriching Your Own Life. The book seeks a publisher. Robert’s other books are One of the Guys and Thank You for Keeping Me Sober. Visit his eldercare website HERE. His Amazon page is HERE.
Editorial Note (Jamie Dedes): In addition to being a caretaker, Robert is an accomplished novelist, writer, and editor. I first “met” Robert several years ago when he was the creative nonfiction editor for an online literary magazine. In submitting his bio to us, he was understated about his mission, which is an important one. He notes on Amazon:
“According to AARP, 61% of family care providers are women, with the typical caregiver being a 46-year-old female who is caring for one or both parents. Of the 39% of caregivers who are men, a majority are husbands of senior women, rather than sons. This gender imbalance in eldercare is one of the things we need to work to change.
“I’m unusual in being a male caregiver. One of the goals of this book is to help people understand that men can–and should–become nurturers.
“But my greatest wish is that this book will become a vital lifeline to everyone who, overnight, must face what first appears to be the devastating challenge of eldercare–a challenge that opens the way to unexpected growth and fulfillment for the caregiver. There is nothing to fear in eldercare. There is only joy, growth, and love.”
A few weeks ago we attended the 25th Anniversary Celebration at the our local zen center. The day was splendid, and the ceremonies moving.
I have had a rather rocky relationship with the Zen Center due to issues of accessibility. Sometimes the Center has been very accommodating, other times attending functions there has been a challenge. Visits go best when I remember to bring my own slippers. Unfortunately, on the day of the Anniversary Celebration my slippers were at the office and I forgot to stop and pick them up.
The Zen Center has beautiful, very slippery, cherry floors, and I do best there when I can keep my brace and shoes on. For the celebration the staff of the center provided surgical slippers to those of us who need to keep shoes on. Unfortunately, the surgical slippers proved to be very slippery, and I had difficulty keeping my balance even with crutches. After the formal ceremony we left the Center building to attend a Taiko performance outside. When others returned to the building to listen to a storytelling performance I chose to remain safely outside.
During lunch I spoke about accessibility issues with some of the Zen Center staff. The gist of the conversation was that the Zen Center policy places protecting the cherry floors above providing accessibility for disabled visitors and members. It also became clear the policy is a source of discomfort within the center.
Since the celebration I’ve been wondering about the tension between the lack of access at the center for us folks with mobility issues, and the Buddha’s insistence on making the Dharma and Sangha available to all. I also wonder how it could be that in a structure so lovingly designed and built there could be so little attention to accessibility.
Very much like the monks in one of my favorite zen stories, I’ve crossed that river but seem unable to put this one down.
MICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.
The BeZine 