Meet the man traveling by wheelchair to advocate for more accessible nature trails

Mackay travellings on the Olympic Discovery Trail near his home in Washington .
Image: Courtesy of Ian Mackay

Ian Mackay considers himself a cyclist and a birder a nature buff who gets lost on lush roads near his Washington state home for hours every day.

But if popular opinion had its way, many people wouldn’t expect Mackay to be able to pursue this passion. They may even assume he couldn’t genuinely enjoy the outdoors independently.

That’s because his “cycle” is his power wheelchair, and Mackay is a quadriplegic man.

Using a power wheelchair in nature does have its challenges, and Mackay is the first to admit that. But those challenges don’t inherently stem from Mackay’s disability. He says they’re usually an expression of the results of nature trails that are relatively inaccessible to those on wheels a problem bicyclists and parents with strollers all grapple with, too.

Mackay is advocating for this to change and he’s use somewhat radical means.

The outdoors enthusiast simply embarked on a 10 -day journey, which started on Aug. 13, that will take him more than 300 miles. Beginning in Victoria, British Columbia, and ending in Portland, Oregon, the road will span the entire length of his home state.

As Mackay puts it, he’s “rolling across Washington” to bring awareness to the need for accessible trails and bike tracks. And he’s dubbed the journey Ian’s Ride.

The need for most accessible trails

On June 4, 2008, Mackay was in a bicycling accident at age 26 while traveling a nature trail. He was riding home from college on a familiar route in Santa Cruz, California but what wasn’t familiar was unexpected patches of sand on the turns of his regularly traveled trail stimulated him slide out and lose control. Mackay ran headfirst into a tree.

“I crashed and I violated I broke my neck, ” Mackay , now 34, tells Mashable .

The helmet he was wearing most likely saved his life. But Mackay sustained a spinal cord injury in the accident. The outdoors enthusiast can now shrug his shoulders, but that’s the maximum mobility his body is capable of below the neck.

Mackay travelings theOlympic Discovery Trail in Washington state.

Image: Courtesy of Ian Mackay

Mackay’s passion for nature predates his paralysis. He started to appreciate roads in his 20 s, but says he only rekindled his love for the outdoors about two years ago with the help of assistive technology.

Mackay knows he is relatively lucky that accessible trails are abundant near his Washington home. Yet, that access isn’t guaranteed in all places even in other regions throughout Washington.

“Me and my other paralyzed friends that live in the greater Washington area many of us don’t have the luxury of having access to beautiful trails or easy to access routes, ” he says. “Much of the time, we are stuck on the sides of roads and roads and we don’t want to be at risk on the shoulder riding next to big rigs.”

In planning Ian’s Ride, there was one key topic facing Mackay: In a ride advocating for more accessible roads, how was he going to ensure his route was actually accessible? Much of the journey, after all, is uncharted territory for the outdoor adventurer.

“We are stuck on the sides of roads and roads and we don’t want to be at risk on the shoulder riding next to big rigs.”

Mackay says that’s where Washington Bikes, a statewide organization that advocates for more accessible roads in the nation, stepped up and had an indelible impact. Historically, the organization hasn’t focused on people with disabilities, but instead cyclists and parents with strollers who also frequent roads. But Mackay’s accessibility requires, he says, perfectly align with those of other nature travelers on wheels.

The organization helped connect Mackay to the cycling community in “the worlds largest” Washington region. After Mackay put together a proposed plan of his road, he posted it on his blog and the cycling community took action.

“I got a tremendous amount of emails from cyclists with pictures of roads I wanted to travel and advice like, ‘There’s very little sidewalk. You might want to reconsider, ‘” he says. “With all of this input, I was able to revise and now I have the best scenario possible.”

The route for Ian’s Ride.

Image: Politenes of Ian MackAy

Though he says the bicycling community has given him a “much more polished, viable road, ” the majority of his trip will be on roads and shoulders of small highways. It’s what’s most accessible, Mackay says and an indicator that the work he’s doing is essential.

“Anywhere I can get on a track or road, I’m going to be on a track or road, ” Mackay says. “But even me being visible on these roads and roads only highlights what I need more.”

Mackay isn’t going on the journey alone. His mama, Teena, is his “main roadie.” She will be driving the route, providing general caregiving to Mackay during his trek. Mackay will also travel with at the least two cyclists the entire day, additionally meeting up with other friends along the way who want to be a part of his journey.

Ian and his mother, Teena.

Image: Politenes of Ian Mackay

For the first few days, Mackay plans to go about 40 miles per day. But his power wheelchair, which can travelling up to 7 miles an hour, merely goes 25 or 30 miles on a single charge of the battery, presenting an obvious problem. To curb the need to charge, Mackay is bringing a second chair to swap mid-day.

“I’ve done 30 -mile days, but I’ve never done a 40 -mile day, ” Mackay says. “It’s going to be a first for me, but I’m ready for it.”

Technology helping to facilitate independence

Since his accident, Mackay says he has grappled with the desire for greater independence especially when it comes to exploring nature. For the first several years after his accident, he shied away from the outdoors, feeling unable to take advantage of the trails and routes he once frequented due to his disability.

Technology gave him the confidence to reconnect with nature, and it’s a key element of Ian’s Ride.

“The more roads out there, the very best for everyone.”

To drive his power wheelchair, Mackay use a sip and puffed a straw-like device that is sensitive to air pressure, letting him to send directional signals to his wheelchair. And while that technology lets Mackay to navigate independently, what really has given him the confidence to explore the outdoors is something people without disabilities use daily a smartphone.

Mackay gives credit for being able to independently and fearlessly explore nature to Switch Control, specific features released on Apple’s iOS 7 in autumn 2013. The feature allows Mackay to navigate his iPhone with a simple switch placed near his mouth, utilizing flicks of his lips to replace finger gestures other users typically rely on.

“Before Switch Control came out, I was very reliant on someone using the phone for me or navigating a GPS for me, ” he says.

Now, Mackay can be the main navigator in his everyday outings and on Ian’s Ride. Over the 300 -mile journey, he will control the GPS and be the point person for all his squad. And he’ll do it completely hands-free.

Mackay says the importance of technology to people with disabilities while out in nature can not only be life-changing, but also life-saving. And it has been for him.

In summer 2015, Mackay crashed his wheelchair while out on a trail, totally tip-off over. The trail was not well-trafficked, and his mouth could not reach the switching needed to activate his telephone to alert assist. He couldn’t even use the “Hey Siri” option on his iPhone a command that automatically activates hands-free navigation for iPhone users because there was not enough service.

Mackay, however, had a back-up alternative a tracking app that proved to be essential. When he was gone for a prolonged period without contact, his family knew to activate the app and find him.

“Having that confidence and knowing I can reach my help has allowed me to spend hours out there as long as I have someone on call, ” he says. “I now have that feeling of independence again.”

The beginning of accessibility advocacy

Mackay admits that the push for most accessible trails is going to take more than one human on a 10 -day mission. He says it’s going to take communities getting more invested in their own trails and accessibility at large.

“To push for accessible roads, we first need to get more activity and traffic on the ones we already have.”

“All of our communities have great places in nature that are underused, ” Mackay says. “To push for accessible roads, we first need to get more activity and traffic on the ones we already have. That gets the conversation started.”

But he also recognizes that sometimes advocacy works best through policy. He encourages people around the U.S. to talk to local and state government officials to express a wishing for more all-inclusive roads even if they don’t inevitably need them themselves.

“You know, I enjoy traveling, ” Mackay says. “The more people can get out in their communities and proponent for this, the very best it is for me and the very best it is for them.”

Even with complex planning and inevitable challenges along the way, Mackay is hopeful his ride will make a tangible impact. And he hopes that impact is felt not only in the Washington disability rights community, but for all people who could benefit from outdoor accessibility nationwide.

“We’re all in it together be it the cyclists, the mommies with strollers, the joggers. We’re all together out there, ” he says. “The more trails out there, the very best for everyone.”

To support Mackay throughout his ride, you can visit his blog or donate here. All funds raised, Mackay says, will go toward lodge and other accommodations during his trip. Any additional fund will be given to Washington Bikes to assistance the organization in stimulating roads most accessible in the state of Washington.

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Ona Gritz: ‘I had expended more than enough time concealing and pretending’

For years, the poet and author tried to keep her cerebral palsy secret. Then motherhood and a new love taught her to make peace with her body

There are ways to cover for the fact that you cant run like the other children, or skate, or climb fencings, or ride your flowered banana seat bike without educate wheels. My own strategy was to suggest alternatives, offering to bring out a board game, colouring volumes and crayons, or my brand new, unopened jigsaw puzzle with the picture of a farm scene on its box. If my friends countered by asking to play hopscotch, a game that would require each of us to stand first on one foot, which I could do fine, then on the other, which I couldnt do at all, Id act like the idea was too dull to hold. If they suggested we play cards, Id say yes, but reluctantly, willing someone else to insist on shuffling since it takes two good hands to bend and riffle each half of the deck. More often I told them, truthfully, that Id instead grab our dolls and play house or store or any other game of pretend.

Pretending, after all, was the thing I was best at. It was the sorcery that allowed me to occupy any capable, agile, graceful body I chose.

In our mobbed box of curled family photos there is only one picture that includes the leg bracing I was made to wear because of my cerebral palsy, though even here it is barely visible. A slight protrusion beneath the fabric of my pants, a hint of metal peeking from the hem, the single angled strap that attached it to my shoe. Im three years old in the photo, the same age I was the first time I held it in my hand. Oh, I said. Id watched posters for the March of Dimes with images of children leaning on crutches or sitting in wheelchairs, and now I assured that I was like them in some way. This struck me as nothing more than an ordinary fact. Oh.

Shortly after that picture was taken, my doctor decided I only needed to wear the bracing in bed at night. Daytimes, it lived in the back of my closet, tucked in a brown paper grocery bag. My mother let me to leave it home whenever I slept at a friends house, or in its hiding place when a friend sleep at mine. Maybe this was how I got the idea that my cerebral palsy could and should be kept secret. This, coupled with the fact that my father never mentioned it, and that my mother, when she did discuss it, said, Its nothing, hardly noticeable, dismissively waving her hand. To me, my body was simply my body, the only one Id known, and so I thought the brace was my disability. As long as I kept it out of sight, I fitted in with my friends.

Lets feign we walk like people who limp, Lisa Lowenstein suggested one muggy afternoon in our sixth summer. She slid off the stoop and began hobbling in a circle, and though the game constructed me uneasy, I get up and did my best to imitate her awkward moves.

Lisa paused to observe me. Just walk like you always do, she advised. You walk like people who limp.

Oh, I said, just as I had when I first saw the photo where Im wearing my bracing. Merely this time my throat tightened around the word.

In middle school, I detected it helped to carry fictions in my backpack. That way, if my friends decided to pay handball at the park or zip around the neighborhood on their 10 speeds, I could pull out my volume and say, Im too caught up in this right now, which, soon enough, would be true.

I also get good at finding the girls who were happy to sit inside, listening to records, and the few left who, like me, were slow to give up Barbies and other daydreaming various kinds of games.

Ona, aged three, with the leg bracing she had to wear.

What do you want to do? Jody might ask me.

I dont know. You?

I dont know.

Rock star spouses? one of us would eventually ask, sighing like it was a last resort.

I guess.

After that marriage play for hours, immersed in the elaborate narratives we created for Elton, Paul and beautiful grownup versions of ourselves.

Still, the next time Jody and I got together, whoever asked would be tentative about it, afraid the other “wouldve been” first to outgrow the game.

By high school, pretend games were no longer an option, unless you count pretending to have my period so I could sit on the sidelines in gym class. Or claiming to be too behind in homework to join my friends at the ice rink. Or acting as though my antipathy of disco was the only reason I stood pressed against the wall at dances while the other girls mastered those perfectly synchronised steps.

Why dont we go to the movies? I was always the one to indicate. There, in the comforting darkness, all I had to do was sit perfectly still, along with everyone around me. Row by row by row, we imagined together, lost in the drama of fictitious lives. The movies offered a means of playing pretend that was still sanctioned, a way to be social that asked nothing of my faulty legs.

For college I selected a small, artsy school where the only squad athletic offered was Ultimate Frisbee and there were signs posted on the bulletin board throughout campus that proclaimed Its Okay to be Gay. I extrapolated from this that here, in this heady oasis, it was OK to be different. Among my classmates were daughters with unshaven legs, boys who wore lipstick, children of both genders with spiky magenta hair and splatters of safety pins on their clothes. Still, while I admired these outliers for their boldness and originality, I conceal my uneven legs under long gauzy skirts in my usual attempt to blend in.

If my new classmates noticed my limp, or my childhood friends had considered through my excuses, the latter are kind enough not to say so. This allowed me to believe my own fabrications. I see it now as a wilful and instantaneous sort of amnesia. As soon as I succeeded in avoiding a physical challenge or a potentially embarrassing moment, the memory, along with any guess about my disability, scattered.

The young Ona: If my new classmates noticed my limp, the latter are kind enough not to say so. Photo: Leonard Gritz

Even so, as I settled in at college, an unnamed tension left me. I now lived in a place where I could curl up with my books hour after hour , not because my friends were off having adventures I couldnt keep abreast with, but because this was the escapade. I majored in literature and had plans to become a writer. As I read and honed my craft, it felt as though the body, my body, with its limits and awkwardness, was the least of who I was. Eventually, I could live the life of the mind. How perfect was that? Except, of course, it was only part of the narrative.

One afternoon in the campus library, I highlighted this line in my slim paperback transcript of Virginia Woolfs A Room of Ones Own :

Women have served all these centuries as looking glasses possessing the sorcery and delicious power of reflecting the figure of human at twice its natural size.

I marked the sentence, having brushed past and already forgotten this, from earlier in the same chapter, about the fact that so many men have written books about females:

…it was flattering, vaguely, to feel oneself the object of such attention provided that it was not entirely bestowed by the crippled and the infirm

Had I, a 19 -year-old crippled girl, flinched when I read this? Had it stung? I dont know. Id forgotten those terms existed, and merely detected them now, decades later, while searching for the looking glass quote that has stayed with me all this time. This was precisely how my self-protective amnesia ran. Virginia Woolf devalued people like me in a chapter about the importance of confidence? But I loved Virginia Woolf, so the insult quietly left through some back door in my mind.

Ona at home: A verse workshop, I sat beside a human named Dan. Photo: Gene Smirnov for the Observer

What did interest me that afternoon was the metaphor of the mirror, and the idea that humen utilized us to construct themselves up. Id recently joined a feminist consciousness-raising group, and had begun insisting, sometimes petulantly, that I be referred to as a woman rather than a girl. When I marked Woolfs terms it was because they struck me as poetic and true. What I couldnt yet watch was that I had begun to use men similarly , not to reflect me at twice my natural sizing but as attractive enough. As OK.

This is where my college life wasnt all disembodied intellect. I had also begun seeking validation through sex.

Here is another truth. I wasnt at all beyond the racisms expressed in Woolfs forgotten passage. The young men I pursued had to be not just smart-alecky, creative and interesting, but handsome too. It ran without saying that they were also able-bodied. Everyone I knew was able-bodied. There may have been a handful of other students with disabilities on campus, but I paid them no intellect.

I choice humen for the incorrect reasons and, in turn , none of them choice me for anything more than an occasional intimate night. Then, when I was 25, I gratified Richard. He was athletic and handsome in the way of the popular sons who were completely out of my league in high school. The two of us had very little in common. Richards passions included skiing and mountain biking, and though I could never join him on either terrain, he was passionate about me too.

Richard was earnest, playful and affectionate. He was also hot-tempered and impossible to please. Nonetheless, I invited him to move into my apartment. Soon after, we got engaged. All the while, my friends seemed on warily.

One friend told me she had always imagined that the man Id wind up with would be someone she found amazing.

Someone smart and actually kind. The type of guy Id love for myself, only Id be so happy for you I wouldnt be jealous.

She watched me carefully and I realised that her comment had not just one subtext, but two. First, and more obvious, Richard, who was more conventional and less intellectual than my previous love interests, didnt gratified her expectations. Worse, it seemed shed always believed that only person amazing and actually kind could possibly opt me. What hung in the air, unspoken between us, was the reason she thought it would take such a remarkable person to love me. I was defective. This built me cling to my handsome boyfriend all the more.

One weekend, while Richard was off mountain biking with friends, I decided to spend an afternoon in the city. After a movie and lunch at a cafe, I observed myself following a strange woman down a meandering street.

Is that what I look like? I wondered, carefully studying her from a distance. Shes pretty enough, but how much does her hobble detract from that?

Over the following weeks and months, for the better part of a year, I maintained an eye out for women with physical disabilities. When I determined them, I trailed them. For a while, my curiosity remained on the surface. Could women who moved like me still be considered attractive? Did I find them so? But as I continued my stalkerish experiment, something shifted. I began to want to know about their lives.

The best route I knew to process this, as with most issues I grappled with, was through penning. Alone at my desk, I entered into a kind of the negotiations with these strangers I was too reticent to approach in person. I did this by writing a lyric in the voice of a nonverbal quadriplegic female who was in the news at the time.

By now I had completed an MFA in creative writing and had procured my place in a community of poets. One wintertime afternoon, I ran into an acquaintance who invited me to take part in a verse reading and panel discussion for Womens History Month. Each participant would be from a different culture background, she explained. Shed already lined up an African American poet, a Latina poet, and she wanted me there to represent disability. My initial reply was to take a step back when she said this. But then I felt a stirring of interest.

Ill be there, I heard myself say.

I had the persona poem, and one about my mother helping me on with my nightbrace, and a third, titled What the Mirror Knows, that used my partial disability as a emblem for other styles I felt divided. At the reading, I surrounded these pieces with poems that built no mention of disability and that, to my mind, demonstrated I resulted a perfectly normal and interesting life.

The panel discussion ended with questions and comments from the audience. There was one girl, seated a few rows back, whose insights caught my attention. She referred to writers I loved, and made connections that surprised and intrigued me. Afterwards, as I was gathering my things, I looked up to find her waiting to talk to me.

I really liked your poems.

Thanks. I liked hearing what you had to say.

We smiled shyly at one another. Well, she said, I was likely to use the bathroom before I head home.

It wasnt until the woman, who had introduced herself to me as Hope, started to walk away that I noticed her palsied gait. What could I do but follow her into the restroom?

Cerebral palsy is caused by damage, most often at birth, to a part of the brain that controls motor abilities. There are various forms, and it affects people to widely differing degrees. Many dont have enough balance to walk or need crutches to do so. Some have uncontrollable tremors. Some are intellectually disabled, while others are assumed to be because their facial muscles are affected and their speech is unclear.

Hope and I both have relatively mild cases and forms of the disability that affect only half our bodies. She has diplegia, which entails the palsy is only in her leg. I have hemiplegia, which entails the split is horizontal. The muscles of my right extremities are tight and underdeveloped, and the fingers of that hand lack the dexterity, tactile sensitivity and fine motor skills of those on the left.

Its luck shes left-handed, a doctor once told my parents during a consultation, since shell always have to depend on that side. I was nine at the time, old enough to resent being spoken about in the third person, and also to find the flaw in his logic. Maybe I was born left-handed, maybe not. The body learns to compensate, just like the mind.

Years afterwards, I read an article suggesting that right hemiplegics are likely to be more creative and less practical than our counterparts whose disability is manifested on the left. The hypothesis is based on left/ right brain differences. Left hemiplegics have undamaged left hemispheres, which is where pragmatism lives. Meanwhile, we right hemiplegics need to rely on our intact arty and imaginative right hemispheres.

The theory appealed to me. It fitted me so well. But then, just as I understood at nine years old, when it comes to cause and effect its hard to assess the true order. Surely, my cerebral palsy and my drifty, daydreaming styles are connected. But to what extent is this due to the physical brain as opposed to the simple desire to escape the confines of a limited and disappointing body by imagining it away?

Hope and I spent several hours in a coffee shop that late afternoon, commiserating about what it felt like for each of us to be the one kid on the block who couldnt operate, climbing fencings, or ride a motorcycle without educate wheels. I learned I wasnt the only one who coped by making excuses, hiding behind volumes, and living too much in my head. This was the first time either of us had ever spoken about these experiences. It was also the first time that I could remember when I wasnt expending effort and energy to pretend my spastic paralysis didnt exist.

While Hope took the fuel of our connection and almost immediately got involved in disability activism, I went home to Richard and my notion that his love for me meant that my spastic paralysis was, as my mother had assured me all those years ago , nothing, hardly noticeable.

A few months later, Richard and I wedded. With Hope now in my life, I had a growing consciousness about disability that came close to acceptance, but it was a place I visited , not yet one where I lived. More real to me was my marriage licence, which I insured as a kind of passport. It proved that where I really belonged was in the enviable world of the unscathed.

Something I had wanted since I was a child trying to coax my friends away from their games of hopscotch and tag to play house with me was to one day has become a mom. Six years into our marriage, Richard and I concurred the time was right.

Through my pregnancy, my midwife never once mentioned my cerebral palsy, so neither did I. She did suggest a number of tests to rule out potential birth defect. Always I declined, feeling vaguely insulted, though I couldnt have said why.

Our son Ethan was perfect: seven-and-a-half pounds, 14 inches, with active extremities, the right amount of digits, and a hearty weep. For the first hours after his birth, Richard and I sat together in the hospital room and stared at him in wonder. Eventually, a nurse came in to help me with breastfeeding.

You need to lift your elbow so his head sits a little higher. Not working? How about we try the other side? Can you change him so hes in a better posture? Let me prove you something called the football hold

Nothing we tried run so she brought in another nurse and then a third. They piled cushions around us until I could ultimately hold Ethan at the right slant and height.

There we go, the nurses said once he began to suckle.

Problem solved, Richard put in.

This tiny new person nuzzling at my breast depended on me. Yet, somehow, as Id floated through my pregnancy, daydreaming as usual, it had never occurred to me that I wouldnt be able to meet his needs. Now, as I touched his cheek with the one hand that could really feel him, I understood that I didnt have the balance or coordination to be this fragile, trusting people mama. I may have learned early in life to cover for being unable to run, skate or climb fences, but there would be no covering for being unable to safely bathe a newborn, carry him on stairs, or walk any distance while he flailed in my limbs.

From that moment on, the daily and very physical tasks of caring for a baby forced me to recognise my disability for what it actually was. A set of very real and specific limitations I had to either work with or around. There were constant puzzles to solve, along the lines of, Ive arrived home with a baby and a bag of groceries in his carriage and now I find that the one elevator in our apartment building has broken down. What do I do? Often the only answer was to ask for help from a neighbor. The first few periods I did so, I stammered and felt myself flush. Then the working day I simply stopped feeling apologetic. So, I had a disability. It was what it was.

Meanwhile, Ethan had begun reaching his perfect pudgy little limbs towards me the moment we were together in a room. His absolute acceptance, despite my funny stroll and clumsy touch, struck me as both lovely and familiar. It reminded me of my three-year-old self , noticing my brace in a photo without judgment.

Its tempting to aim the tale here with the happy ending of a renewed self-acceptance. I would, except it gets even better.

Its neither a surprise nor a misfortune that my marriage to Richard aimed when Ethan was still small. Richard remains active in Ethans life and the divorce provide proof the best choice for us all.

One holiday weekend, when Ethan was eight, he bided at Richards while I went to a novelists retreat. There, in a verse workshop, I sat beside a man named Dan, who had a soft-spoken gentle way and, I could tell from his responses to poems, an incisive mind. When he brought out his own lyric to be critiqued, I liked him even more. His piece had rhythm, humour and heart. This was definitely person I wanted to know.

I watched him read and take notes by tapping on a braille laptop, his guide puppy sprawled at his feet. After the workshop aimed we stayed in our seats an extra few minutes talking, then he slipped his hand into the crook of my elbow, and we strolled together to the next event. I wondered if he noticed the lilt in my walking, and actually hoped he did. I wanted Dan to know that, along with verse, disability was something we shared.

A week afterward, Dan called me and we stayed on the phone for four hours. In many styles, it was like my first conversation with Hope in the coffee shop. We were so happy to share our stories with each other, and while, in this case, the details of our disabilities bore no similarity, when I talked about the long and circuitous road I took to attaining peace with mine, he let me know hed been there too.

Still, I thought about how, as a young lady, Id considered my disability a cosmetic flaw, akin to having a bad complexion or being a bit overweight. My concern had been whether people noticed. Now, it passed to me what an indulgence that was. Born blind, Dan never had the luxury to feign.

When we fulfilled, Dan and I lived a hundred miles apart. This entail we only got to be together on weekends. The rest of the week, we talked on the phone, building our relationship on a foundation of ideas and conversation. From the beginning, I was captivated by how smart he was, and by how intently he listened. Of course Dan listens well. Hearing is the sense he relies on the most. But Id never met a man who did so with such presence and interest, and somehow I knew that this had more to do with who he was and what he valued than given the fact that he was blind.

Long before Dan and I got to know each other, hed begun to write beautifully and candidly about their own lives as a blind man. He also had a community of friends who were writers and artists with physical disabilities. I wanted in, and they embraced me without hesitation. Soon, I began to seriously take on disability as a topic in my work. It felt scary at first, a little like pulling my childhood bracing out of the closet and putting it on display. But I had expended more than enough time concealing and feigning. I wrote as truthfully as I could about how it felt to live in my particular body, which allowed me to see how universal my experiences actually were.

Dan and I were married on a bright, breezy day in June. Hope slept on our couch on the nights bracketing our wedding day. Ethan stood with us at the altar, holding my palsied hand.

We have been together for 12 years now. The work we do includes disability awareness presentations, literary reads and panel discussions about disability poetics. During one such event at a large poetry celebration, a member of the audience, a man with a visibly awkward gait, took the microphone during the Q& A portion and asked in a shaky voice, How did you learn to like yourselves?

There were four of us up on the stage and for a long moment we were silent, touched by the vulnerability in the question. I thought of Hope whod approached me after hearing my first tentative lyrics about disability. I thought of Dan and our community of disabled friends, including those with us up on that stage. It struck me that, in some manner, “were in” each a pleasing and accurate mirror for the others.

Do you like us? I asked.

The man nodded.

Well, thats a start.

Ona Gritz is the author, most recently, of On the Whole: A Story of Mothering and Disability( Shebooks, 2014) and the poetry collection Geode, which was a finalist for the 2013 Main Street Rag poetry book award. Her essay, Its Time, which appears in the Rumpus, was named a Notable Essay in Best American Essays, 2016

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Police killings: the price of being disabled and black in America

Normal police procedures often force people with physical disabilities to stay closeted, even to themselves. How can there be justice without dealing with the stigma of disability and race?

On Sunday morning, Charleena Lyles called the Seattle police to report a burglary. She was a black female, pregnant, the mother of four children( including small children with Downs syndrome ), living in housing for formerly homeless individuals.

The police indicated up, determined her in a mental health crisis and allegedly armed with a knife, and killed her.

The killing has elicited widespread outrage across the nation but how do we go beyond it? How do we untangle the connections between racism, classism and ableism, and police violence?

As the story of Lyles preventable demise unfurled, a group of non-white and disabled activists in Chicago reacted with grim familiarity.

They know this story. And theyre worried that one of the best tools at their disposal to stop the violence is being taken away.


In 2005, Chris Huff tried to kill himself and was taken to Michael Reese hospital on Chicagos South Side. My mommy took me to go get evaluated. I was going to only get an evaluation and next thing I know, Im getting checked in, he said.

Institutionalization didnt help. Three months ago, Huff brought a gun to high school, filled, as he described it, with paranoia and dread. He get jumped, pulled the firearm and used it. He was charged as an adult for attempted murder, worsened battery and exacerbated discharge of a pistol in a public facility.

He was 15.

Chris Huff speaks at an event organized by disability activists. Photo: AYLP

Now 27, Huff lives in Ogden Park in Englewood, a neighborhood on the South Side of Chicago, where I drove to satisfy him. As the hot afternoon waned, we spent an hour in the shade of the sycamore trees, sitting on a slanted wooden bench, talking.

He was restless. He sat. He stood up. He paced and smoked. Piece by piece, he disclosed his theories about disability, race, poverty, policing and the vicious cycle in which Chicagos incapacitated black residents have found themselves.

Huff is a member of Advance Youth Leadership Power( AYLP ), an advocacy group organized through Access Living, one of Chicagos resulting disability rights organizations. They have taken on a complicated twofold mission.

First, they attempt to teach those concerned about police conduct, including the Department of Justice taskforce, to find the disability component in the broader narration of an abusive Chicago police department especially as a third to half of people killed by police have a disability. Second, and perhaps even more critically, these activists are hoping to help their own communities perceive the links between disability and racial and economic justice.

In 2015, the succession of the death by police shooting of LaQuan McDonald, followed promptly by other high-profile lawsuits( Philip Coleman, Quintonio Legrier and Bettie Jones ), sparked a wave of action in Chicago. The three men had a disability, and Jones was killed when the police came for Quintonio.

The political fallout eventually led to the abdication of the police chief, and the DoJ afterwards came to town to analyse police procedure, holding open forums where people could discuss their experiences.

Thats where I first met Huff, standing in front of the crowd, telling his life story teaching. Seeming back on his arrest, he says: I dont think its a coincidence that three months after my diagnosis I was, you know, utilizing a weapon at a school.

Hes lucky, he says, to have avoided serious prison time. Instead, his mother found him lawyers through a Northwestern institute, and a judge permitted him to move with his mother to Georgia and away from Chicago while awaiting trial.

In the end, he spent a few months in an Illinois facility as a juvenile, rather than a multi-decade sentence that might have followed had be been tried as an adult. When he turned 18, his record was expunged. College, down south, followed. Then the South Side called him back for grad school and , now, his career with the Vera Institute of Justice, where he works with recently incarcerated youths.


No one knows how many of the victims of police violence are disabled.

We have some national data, which I pulled into a white paper for the Ruderman Foundation in 2015, but were far too reliant on anecdotes only because police departments and state governments have been resistant to tracking use of force. The anecdotes remain telling, though. The major occurrences behind the DoJ investigation of Chicago involved incapacitated black men.

Laquan McDonald had both PTSD and unspecified mental disabilities. Philip Coleman, who died in custody, had a mental health crisis and police arrived after parents called 911. The officers said: We dont do hospitals, we do jails, and took him to prison. A video released in late 2015 proves a non-resisting Coleman being repeatedly tasered and dragged from his cell. He died not long after. A Chicago police officer killed Quintonio Legrier, a young black human in mental health crisis, while also shooting the neighbours who was maintaining an eye on him( a black female named Bettie Jones ).

AYLP and its network of activists decided to get involved. They staged an action outside one of the cases hearings in July 2016, then ran inside to testify.

Charleena Lyles called Seattle police to report a burglary. The police depicted up, find her in a mental health crisis and allegedly armed with a knife, and killed her. Photo: Courtesy of household

I was there and watched an 11 -year-old boy, his mother standing by, talking here trauma. When he was six, police charged into his back yard, guns drawn( the person the latter are looking for was several houses down the block ). His mother, Melinda Manson, describe her sons years of nightmares that followed.

Timotheus Gordon, a black autistic PhD student at the University of Illinois who describes himself as a black football player and dreadhead, talked about his constant dread of being to halt police and not being able to respond quickly enough in such a way that policemen saw acceptable. The household of Stephon Watts, a black autistic teenager killed by police in nearby Calumet, “was talkin about a” their lost loved one. Huff told his tale too.

The message was clear: there would be no justice for Chicago residents without addressing both disability and race when it comes to policing.

The good news is that the DoJ examiners heard the message and collaborated with AYLP to organize a number of sessions, some open to the public and some private( and thus safer) to ensure that disabled Chicagoans could tell their stories.


Over the autumn, I sat down with various members of AYLP to understand their vision. I maintained hearing the same two points in different ways.

First, they believe that the legal system is designed to maximize the oppression of black disabled people. Second, within the Chicago-area black community, stigma causes people to avoid talking about disability. In other terms, too many people is considered that talking about LaQuan McDonald as disabled demeans him, or that the conversation around mental illness and policing should be different than the one around autism.

Candace Coleman, Youth Organizer for AYLP, disagrees. She says: Im black, Im incapacitated, and Im from the South Side of Chicago. But she also knows that stigma is a real thing. She always knew she was incapacitated( she has multiple disabilities, including spastic paralysis and asthma, and has been in and out of hospital throughout their own lives ), but it took a long time for her to discover true pride in that aspect of her identity.

Today shes a leader in the disability pride movement, but recognizes that its going to take a long time to bring that pride to everyone. In too many communities, talking about mental health is not OK. You self-medicate, you do what you gotta do to get through, but its not OK to talk about it even now. If no one talks about it, even well-intentioned reformers arent going to know to listen.

For Huff, the stigma is a function of the dysfunctional system. He sketched out the pattern for me that day in the park. According to his analysis, oppressive situations cause stigma and intensify the negative effects of mental health conditions in particular. Those negative impact lead towards interactions with law enforcement. Law enforcement manages such interactions badly, far too often punishing people who behave differently in any way, and reinforcing the necessity for people with disabilities to remain closeted, even to themselves.

Once I came into the world, they already had a set of systems for me, he says. They had my neighborhood ready for me, the community because of segregation. Everything was already pre-planned. What I believe is really happening is that a lot of the illness, yes theres genetic components to it, but theyre manmade ailments. I have to adapt to the current systems and structures in order to receive education, job, housing.


One of the last acts of the Obama justice department was to release a report on policing in Chicago. It was a devastatingly blunt appraisal of the routine violations of Chicagoans civil right by the police. The US us attorney general, Jeff Sessions, initially dismissed the report as largely anecdotal even when admitting that he hadnt read it. Sessions is opposed to consent decrees between local police departments and the DoJ.

The DoJ report identified widespread abusive practices and made a number of recommendations, including work with community members from Chicagos diverse racial, religious, ethnic, gender, and disability groups to create and deliver cultural awareness training in partnership with CPD, and to advise and suggest the development of additional measures that may improve police-community relations.

The inclusion of disability in that listing is a testimony to the work of AYLP , among others, even if Trump and Sessions are trying to fling the report in the litter. As reported by Rachel Cohen in Vice, experts and activists say the citys mayor, Rahm Emanuel, is utilizing Sessions anti-reform message as an excuse to undermine reform in the city.

As Huff and I finished up, he admitted that he sometimes feels he has a trauma bond with this slice of Chicago. I know Im not the only person who has a trauma bond with the place that they grew up with. Whoever leaves a traumatic experience and returns back to that shit?

I responded: Its not a coincidence that youre living here, that we are in this park. Where else could you be?

He appeared away. All Im trying to do is bring a voice to the conversation of people with disabilities. I would like to[ understand] how structural violence makes or perpetuates the country of psycho-social disabilities, of mental disabilities. How does structural violence generate or add to the dysfunction that one experiences in their life?

He doesnt was of the view that he has a choice. Dysfunction is everywhere. He has to adapt. But he finished: I believe that, basically, if you adapt to dysfunction, youre gonna adopt that dysfunction.

David Perry is a disability rights journalist. His work focuses on violence and criminalization, and hes currently writing a book for Beacon Press with the working title: Disability Is Not a Crime

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