Tag Archives: disability

The Experience of Exclusion: Incorporeal Embodiment

I am a ghost, but have not died
I walk among the living unseen
Apart from the occasional, startled stare
Everyone else looks quickly away

I am a ghost, but have not died
I speak, though I’ve rarely been allowed a voice
It is easier to dismiss some body different from yours
More comfortable to cut me out of conversation than to answer me

I am a ghost, but have not died
My presence alone has sometimes invoked fear
In the mirror of my sightless eyes, you see your vulnerability reflected
And the truth about mortality, long rejected, haunts you

I am a ghost who has not died
The undead vampire taking resources from the able and the strong
A zombie who cannot belong, with whom you need not empathize
I shoulder shadows, bear the burdens outcast from the light

I am a ghost, though I have yet to die
Invisible to most, but not to some
My heartbeat the same in everyone
I long, I love, I ache, I cry

I am a ghost, a human born to die
And in that we aren’t much different, you and I

I See You _ A Tribute to Every Person Who Is Not Recognized For Who They Are

I see you,
Children no longer here,
Your faces in my dreams
Chiseled on the landscape of my soul.

Last night, I listened to you tell your story,
With a voice that in life you could not share.
You spoke of many wonders, despite your pain,
Most never noticed you were there.

I see you
Young women now and years ago,
Hands reached to steal you from yourself,
Attempt to turn you into stone.

They tried to make you, objects kept in secret towers.
Your fearful eyes haunt my waking hours.
How many still live with scars?
How many died to protect what is ours?

I see you,
As if I were there,
Each moment, a person I’ve never met,
I will keep your memory near.

How could anyone try snuffing out a sacred star?
How could anyone destroy such beauty until it’s gone?
How could anyone fail to see the brilliant light
Within each of us alike, though different for each one?

How can we stare and judge and yet not see
We’re holding up a mirror?
I live the truth it shatters me,
Stark and raw and clear.

My tears they fiercely stand behind my eyes,
So determined not to fall.
If I put words to your thousand nameless cries,
Could it do any good at all?

4: The Specter At The Edge _ Song of Sun and Sea

Far beyond the reedy kelp beds, far beyond the tide of the large salmon and the playing pool, and the open water that drifted with the wind in the patterns of whispered dreams, Bean numbly made her way. As it turned out, the edge was named such for a very practical reason. It was, Bean realized, just as the elders had said it was: imposing and dangerous, a great divide indeed. In fact, with surprise and fear, she swam backward a ways as to not get swept up in the large current torrenting past her with an unforgiving speed. The wind had picked up, and a mournful howl cast itself across the churning water as if the air were mourning an abandoned child.

Is é, the child. Bean was so captivated by the great stream in front of her, and so frightened of slipping into it to be lost forever beyond her home and kin, that she forgot for a moment why she had come. But the immensity of the edge, white bubbles frothing at its surface, rushing onward with a gurgling tumble toward the unknown, could not leave Bean riveted for long. She must find the child, Aisling’s child. And across the cold dark water, the moan in the wind, too familiar to be the song of the air, too haunted and unfathomable to belong to any of her own, surely, cut the forbidding boundary once again with its keening.

Bean turned and swam toward that eerie call, wondering why she had disobeyed her mother and the elders, wondering why she was here: here at this gods- forsaken place with the phantom of the sea almost swept away by that fierce tidal stream beside her, she feared that courage would fail her, she longed for that morning, for laughter, even for her mother’s scolding. The elders did not lie about the edge. Doubt crept into Bean’s mind then. Doubt and shame for acting so rashly, and for so readily dismissing her mother’s warnings and the elders’ words. Might the elders have been as honest about the child as they had been about the edge? The elders surely would punish her now, and Bean would welcome it, for to endure the consequences of your actions, mo leanbh, is far better than to be denied the privilege of justice. In punishment the person is validated, is acknowledged, and without this the person would be rendered invisible. Like us, Bean’s clan did not practice cruelty. They left banishment to what is unforgivable but gave the rest the gift of belonging at the heart of the trials to repay their wrongs.

Anois, now, mar tharlaigh sé, as it happened, though Bean disobeyed the elders, she rightly obeyed the truth inside her. For suddenly, still at some distance, she saw a scene that gripped her in disgust and horror. Two seal women huddled around a small bundle floating on the water. The bundle bobbed up and down almost rhythmically, and it made no sound. Both women had a flipper on the strange bundle, and it was the one to the right of the other who keened so, wailing like a lost and languishing spirit who wandered out of some other world. Bean shivered despite the warmth of her body which was so well adapted to the cold Irish Sea.

Very quietly, as to not be seen or heard, she swam toward this surreal scene, mesmerized in some unspeakable way by the strange bundled specter and the grieving woman. Then she froze. Shock gripped her, so suddenly that she was temporarily paralyzed, and it was hard to keep herself upright.

She saw now no strange phantom object, no mysterious wailing woman, but an elder whose name escaped her knowledge and Aisling, who with wide eyes and fierce sorrow began again to keen her song of love and loss far beyond the end of the known world. That bundled specter bobbing quietly between was Aisling’s child, but to Bean’s bewilderment, the child was not in the water. She wondered in some distant, remote part of herself, at the how of it, checking to see if her eyes deceived her yet again. But no, the child appeared to be wrapped in the reeds of the sea, folded into them, lying upon them like… like… Bean wracked her brain for the object of this likeness which she had seen only once before. Like the vessels that carry humans over the sea, like a boat.

As Bean watched, now deeply perplexed and concerned, the elder woman began to try to gently take Aisling’s flipper off the little boat that carried the child. Aisling refused to let go, which caused the boat to thrash about in the water violently. At that moment, the child began to scream. Bean’s heart broke, but her sadness quickly turned to anger.

Here she had thought the child dead, but its cries told a different story, a story Bean knew would be worse than death. How could they? How could the elders tie a child up out of the water, and send her away, to starve and be forgotten, nameless, perhaps some meal for another creature? Hatred welled inside her then, as strong as the relentless flowing water beside her. For this was no dead child, but a living baby selkie, one of their own, still breathing, still tossing its human-like voice into the turbulent wind which was beginning to gather itself like some wild animal, perhaps thinking in vain to defend an pháiste beag, the little one who would, Bean assumed, be forced to live a half life far beyond the main stream.

And then the mother was no longer weeping, but speaking. “Let her be!” she shouted above the blasts of wind, “I carried her into this world, let her be!”

The elder tried to be kind. Bean saw grief snake-coil in the elder’s eyes, but she also saw a grim finality within them, as if fate’s hand had already rested the decision from the living long ago. “Your child has died,” the elder said softly. “This is the body of your child, yes, but your child lives in it no more. It is an evil changeling took up place in where your child once lived, who looks out from your child’s eyes, who calls like a phantom through sea and sky.”

“No!” Aisling protested, her voice growing horse now from the effort of so much grieving aloud. “I know what is said of the changelings, but this little one will not put a curse on our clan for she is no changeling. She is my infant and she lives still. Please, let us be.”

But at that moment, with a look of terrible resolve, the elder pushed the little craft holding the selkie child toward the edge, and picked up by the wind it glided effortlessly and perilously toward the indifferent mass of water waiting to swallow and consume anything or anyone lying in its path, taking it far beyond where any selkie dared attempt to survive.

Bean’s paralysis broke. Before she had time to think, she was swimming faster than she had ever swum before, not caring about the edge, or even about survival. The current took her by surprise, tearing at her body and threatening to overpower her as she fought to continue moving sideways through it, in hopes of catching that little boat and perhaps rescuing the endangered child. But she was, she realized in frenzied frustration, practically going nowhere, while the little boat moved farther and farther away. If she let the current carry her, she knew, she would never make it home, and would probably die, alongside the child, out in the open sea with no refuge from the harsh winters and no family to speak of. With an overwhelming sense of defeat and despair, Bean looked one last time at the boat now almost out of sight. It had turned slightly, and in that moment she saw an emptiness where the infant’s flipper should be. The child, Bean realized, was born with only one flipper. Was that enough, she thought despondently, to send her to her death before she knew anything of life?

But she could not ponder that question now. She would later, much later when she could take time to process all that she had seen. But now, in her immediate present, exhaustion was upon her and so was the tidal current, tugging her tired body ever further from everything she had ever known. With a last desperate mustering of energy, she turned herself around and paddled for her life toward the calmer stretch of water beyond the edge. When she finally made it to safety, she thought to look around, to make sure Aisling and the elder hadn’t seen. Whatever happened after the child disappeared, they were no where to be found now. Anois ar a féin, on her own, she turned her eyes to the sky and screamed, like a Ban sidhe in the night, one long bloodcurdling scream, for the undead child with no name whose life could have gone better had she actually died. Ansin, then, she put her head on one flipper and just lay there for a moment, heart racing, unsure of what to think or where to go or what to do. She no longer felt so proud to be counted among her people.

After a while, a voice came to her from a long way off on the wind. “Bean! Bean Alainn? Cá bhfuil tú! Where are you! Bean?” Her mother’s voice drifted through the haze that was Bean Alainn’s mind, until she recognized it for what it was. Without much emotion, Bean began slowly swimming wearily toward that familiar voice that she longed, and yet never wished again to hear. It is time to face what I have done, she thought solemnly. She would welcome the consequences of her honesty. She knew she had more than one truth to tell.

Instruction of the Next Generation

It was a beautiful Thursday morning and I was out walking with my guide dog, Allegro, whom I have lately been referring to as “my labradorable,” because of his incredible cuteness. If it were safe to run the trail at Aquatic Park, perhaps we would have. But it isn’t safe to run with a guide dog, and this is particularly true for me because for some reason I often find myself ahead of my dog, and you just don’t want the blind human leading the sighted assistance dog. It defeats the whole point. Anyway, we resorted, instead, to walking so quickly that we could have been mistaken for running, but technically were not. Birds sang, very few people came by, the air was clear, the sun was shining but even in the sun it was wonderfully cool, and I was managing to be exceptionally quiet and not trip on anything which surprised me.

I had too much work to do to make the entire loop around the park that morning, so we stopped at an odd piece of wood and some other material imbedded for some inexplicable reason in the road, which makes an excellent landmark, and I gave Allegro a few minutes of being an ordinary dog. He sniffed around happily as I checked the time. We’d gone 3/4 of a mile in twenty minutes flat, which surprised me once again. I’m not particularly in shape, and I wasn’t running, of course.

Completely immersed in the joy of being able to move and be outside, we made time back the other direction just as quickly. I was not a “blind person on a walk,” although I was walking, and still blind. I did not “look blind” whatever that means, and the phrase should be abolished in my opinion. I looked like myself. I walked tall. Even when walking uphill I managed to stand straight, the way my dad taught me to do a few weeks ago. I smiled at people who walked by. I carried myself like I was sure of my belonging in this world, because of that I am completely sure. I did not move cautiously, but like I trust myself to find my way, and hold my own, because I am learning that I can.

Perhaps that is why the little boy said hi to me as I made my way up the sidewalk back to the main road. There was quite a gathering of children on the sidewalk, actually. I’m starting to wonder if there is an elementary school nearby there? Perhaps parents or teachers like to bring the kids there to play. The park has an extensive playground, awesome for a child. Most of the kids walking toward me were talking amongst themselves and this is honestly what I expected all of them to do. I was on a walk by myself and had no need to have a conversation with anyone.

But the last kid to walk by, who sounded like he was between ten and twelve, who was walking with an adult, slowed down and said hello. And I smiled at him and said hello in return and kept walking.

The adult with the group was either a teacher or his or someone else’s mother. I could hear both of their sets of footsteps behind me, and the woman slowed down slightly. The little boy asked, his voice conveying indignant confusion, “What!” I hear that same tone from kids who are being caught out at something which they shouldn’t have done. What, indeed? What had the kid done wrong?

But I could guess the what, in vivid detail. The “what” went like this: the kid had done nothing that “he shouldn’t have done,” but instead, he did something that “people don’t do.” It is a very important distinction, which the adult with him did not make, and by example started to teach him to not make it likewise. It starts with a look. You know the one. You’re fixed with it by someone with more power than you, usually while you are a child looking up, literally and figuratively to the older and wiser grown-ups around you. You got that look when you picked your nose in public, took off your bathing suit in the baby pool when you were a little too old to get away with it, and perhaps when you said hello to a person with a disability when you were twelve, because you’re sociable and like to acknowledge people you pass on the road. Shhhh, it isn’t done. But I’m on the little boy’s side here. What is that about? Why on earth isn’t it as normal to talk to me as it is to talk to anyone else? My abilities, or lack of them, should not matter that much.

Now, I am not advocating for everyone to pick their nose or run around naked. Most social norms are fine. They’re there for a reason, and a really good one at that. However, I become terribly, terribly sad when I see an adult perpetuating social norms that are exclusionary, that harmfully stereotype and prejudge those different from oneself. This kind of “us” and “other” mentality is the source of sexism, racism, and religious wars, as well as ablism– discrimination based on ability– and is at the root of many more instances of intolerant attitudes and actions as well. It perpetuates destructive social barriers, reinforcing a separateness that deforms relationships and further entrenches false beliefs and perceptions that are as devaluing of the people who hold them as they are of the people at whom such perceptions are aimed. What are we saying to our children when we admonish them for acting politely toward another human being, insinuating they have made some social blunder, insisting, wrongly, that the person they were about to speak to is in a different category, has a disability, and so needs to be treated accordingly?

This is how discrimination against people with disabilities continues, It is passed on from one generation to the next. It starts with the planting of a seed, and grows until we are afraid of one another, until we believe the stereotypes, the lies, the myth of our own separateness. Until we cannot think critically about the distinction between the inculcation of healthy social norms and the perpetuation of ignorance, misunderstanding, distrust, falsehood, and fear.

Sometimes children know more than we adults who think we are in fact so much older and therefore wiser. It is too easy to be like that woman and project your insecurities, stereotypes, and limiting beliefs onto the children in your care, or onto your friends and family who might think differently. I was unsure how to salvage the moment and reassure the adult, as much as the child, that it is perfectly okay to talk to someone who is blind. But there seemed little I could do. What would you do?

I continued believing in myself. I continued walking tall. I know the truth about myself no matter what others are or are not doing. I hoped the child might know an adult who could now teach him an even harder lesson: that not all adults are right, that we can make mistakes, grave mistakes, that we are all equal, and to trust himself. I kept on going my way. Then I decided to share this experience. What world do we want to leave to our children? The answer to that question rests, in part, on what we impart to them about the ways in which we live and accept and belong. It is as simple and as difficult as putting aside our preconceived notions of who we and other people ought to or are told to be, and being open to finding out who we really are, celebrating our differences, and by doing so, becoming part of the incredible difference that will make.

Growing Up As a Blind Child

Through a one-way mirror, they eyed me,
Between us, their watchful eyes conceived the distance
And I began to lose definition.

I of the many translucent faces,
They sanded smooth my jagged edges
Painting them invisible with a missing shade of blue.

They glossed over my differences until I faded into the background
Molding my experiences so that they mapped onto their figures
Until I reflected their perspective thickly occluded.

They even tried to put an eraser
To that unusual glow that seemed to linger
Out of curiosity and the innocence of a child.

And my little ash child remembers their walls:
There were walls,
To keep her out, to contain her with,

But she saw through and far beyond them
How they were made for someone small, so she ignored and walked around them,
And the walls came tumbling down, and that is how they found them.

For a long time I searched for something to shelter me
Until with free hands I rebuilt my foundations,
And only then could I love what I made.

I’ve sought and found the knowledge
That they kept from me with stones.
I have survived their stares, I have stared back.

I have stood within the changing tides,
And learned the language of the wild song,
The one to which I’ve now come home, echoed in the blinking of an eye.

I rekindled trust as if I were tending the cauldron of Cerridwen
And in the river of memories I washed off the dust:
Why had I never seen myself before?

It was like repeating an unrecognizable name, until I realized it was mine.
It was like discovering I was a firefly,
When no one believed I could shine.

And now Across the bridge of overcoming,
I come bringing brokenness to light.
Bright beams alight along the road,

Pooling there like fallen stars, to guide my weary ash-child’s way.
Back through the darkness I reach out, the whole of her I carry in my arms,
And Whisper through her troubled dreams, I am here.

I who leapt among the flames, made it to the other side,
Tenderly I take hold of my ash child’s hand,
And into the blue, together we rise.

Check Out Ali Isaac’s Trailer for Her Forthcoming Book, Conor Kelly and the Fenian King


 

My friend Ali Isaac just made this trailer for her forthcoming second book in her Tir Na Nog series called Conor Kelly and the Fenian King.  I’ve tried pasting in the code for the youtube video, but if it has mysteriously vanished just head over to http://www.youtube.com and search for Ali Isaac Fenian King. Definitely give it a watch!

Conor is a boy with severe disabilities– so severe that he’s the kind of person many would unfortunately refer to as a vegetable. There’s nothing plantlike about this kid, though. First, he’s got a really sharp mind. Also, like me, he can see the mist between the worlds and talk to the Tuatha De Danann.

Conor’s character is loosely based on Ali’s own five-year-old daughter, Carys, who is herself profoundly disabled and still is a beautiful light for all who know her. 

 

Her first book is called Conor Kelly and the Treasures of Eirean.  Here is what Ali says about it: “lost treasures, an enigmatic sorceress, and a boy in a wheelchair. A quest begins…

Book One of The Tir na Nog Trilogy begins an epic fantasy adventure which takes us back in time to the shadowy past of Ireland’s long-lost legend, where
fairy kings and Gods walked amongst mortals, and where feats of magic, swordsmanship, and courage were customary.

Here amongst the ancient stones of Newgrange and Tara, Conor discovers that anyone, no matter how unlikely, can still be a hero.”

 

She says of book 2: “It has been a year since Conor restored the lost Four Treasures of Eirean to the Sidhe.  During that time, there has been great unrest in the magical realm of Tir na Nog. The Ri Tuatha of Gori has been murdered. Annalee has been accused and imprisoned. Ruairi has disappeared, and the City of Fal is under siege.

Once again, the Sidhe turn to Conor for help, as he goes in search of the only man who can reunite them, a man who rests in slumber beneath the hills of Ireland. Conor must overcome his own demons, if he is to save his friends, and awaken the Fenian King.”

You can buy an e-copy of book one at http://www.smashwords.com as well as hard copies at Amazon.  Book 2 should be coming out this fall. I’m really looking forward to reading it!p>

 

You can read more about Ali’s books, her insightful articles on tidbits from her research, and everyday life living in Ireland and being a mother of three at her blog, http://www.aliisaacstoryteller.com.

Along The Road _ When Two Worlds Meet: Part 7

It was Friday, two and a half weeks after I first offered to Caoilte that, as the fianna had no permanent place to live here in the actual world, they could call my small but functional place home. I was exhausted. There were just so, so many of them. Every couple hours when I was home, there were around four groups of five or so who’d come through, and most likely more when I was sleeping, and more when I was gone. They were very respectful and, being disembodied, very quiet. But I was sharing space with them, and it’s very different keeping up a place for many rather than just one. I did end up with some alone time, but never knew for how long it would last, or whether, if someone showed up, there would be something expected of me to do.

 

There were a few times I’d thought of letting Caoilte know this wasn’t working for me, but wasn’t sure whether he’d be understanding or not. I also was extremely stubborn, and every time I came close to actually attempting to contact Caoilte, I’d decide that I could at least attempt to get used to living like this, as everyone else seemed to be, (everyone else had, it seemed, been living in close proximity in groups even in the otherworld, and weren’t phased in the slightest.)  I certainly wasn’t going to give up the minute I felt tired or it became difficult to make good on what I’d promised to do. After all, I’d offered my hospitality, and it would be bad form to change my mind this early on. Besides, I could not imagine a fian backing out of a difficult task, and although I wasn’t a fian myself, I was in some sort of relation important to them or they wouldn’t have included me in the first place. So, I decided to keep learning from the experience, be grateful that I got to meet so many people, and keep up my practice of casting circles around me if I wanted the kind of privacy which would render me truly invisible.

 

On this particular Friday, I was frazzled not just because I’d been entertaining somewhere between fifty and a hundred people, but because it had been the kind of week where I was running into all sorts of obstacles due to my disability. This is a sighted world, and often it isn’t made for me, or at least that’s how it feels. I’d spent hours trying to make the correct formatting on a single poem on the blog. I was trying to finish an a cappella album of music, and as if attempting to record it whenever neither the refrigerator nor the Amtrak trains were running wasn’t enough, I also could only get Audacity to work with sighted assistance. The person I paid to be my assistant was ill and couldn’t show up, which meant I spent five hours that Wednesday including transit and wait time going to shop alone to Trader Joe’s, rather than the mere hour and a half it would have taken with a sighted guide with a car. For all the negative impact cars have on the environment and the planet, the freedom they offer is often taken for granted by those who have them and longed for by those who don’t. Someone without a car, whether sighted or blind, simply has fewer options in the world as to where to travel, and how much to get done in one day.  And ordinary activities such as meeting a good friend for lunch or doing something spontaneous must always be weighed against the hours and hours of transit time and the meticulous planning involved.

 

Being blind confounds these limitations, and adds more to the growing list. When the bus driver forgets to announce my stop in an area with which I am unfamiliar, I not only have to walk an extra five or so blocks but also, usually, get lost. It’s way too easy to be late somewhere because the bus is late, there’s construction, or a light has stopped working. Sometimes buses pull up in the middle of the street, and I miss them as I don’t even know they’re there. Sometimes four or five buses pull up at a stop at once, and it’s necessary to literally run from one to the other and back asking each driver the name of the bus and hoping, if that’s not the right one, that I can find the right one before it leaves. In other words, it gets very complicated, very quickly.

 

It was that kind of week, one with which I am all too familiar, in which I was being told or shown, implicitly or explicitly, that I would have to miraculously reattach my retinas if I ever wanted to participate in the kind of living the world had to offer me. The alternative would be to completely adjust my own expectations and goals, so that they fit the limitations the world was prescribing for me, and I of course found such an option intolerable. Yet the problem really did seem to be that I did have expectations and standards, and it was not just the world that didn’t measure up to them: I did not meet my own expectations either.

 

Given all this, when I installed a new version of Audacity onto my computer and the sound was suddenly muted, rendering every capability it had useless to me, I lost it. A muted computer means I can’t work on anything. It’s akin to having your hard drive go out, and every project you’re working on is suddenly gone. The difference, to my mind it seemed, was that whereas the problem with a hard drive is internal to the computer, the problem with muting was internal to myself. If I could only see, nothing would have been amiss for more than a few seconds. Retrospectively, I wish I hadn’t spent so much time feeling sorry for myself: but that is what happened.

 

I did have the wherewithal at this point to get out of the house. I decided to take a walk down by the bay at Aquatic Park, hang out with nature (the great equalizer of all beings) and soak up some sunshine. Perhaps the light outside me would blaze out the darkness that was threatening to swamp the space within me, threatening to convince me I was actually worth nothing despite appearances, and that giving up my expectations entirely was the only option. Somewhat miserably I made my way across the Amtrak tracks at breakneck speed as to not be caught on them if the bell went off, and wound my way more slowly down the cracked tree-rooted sidewalk to the path by the bay.

 

The bay at Aquatic Park is actually a lake. Building up the area had caused some of the bay to be cut off from the rest by filled land (not landfill, but legitimate land that was used to displace the water.) It’s an incredibly difficult challenge to stay angry while birds are calling, ducks are splashing about and quacking, children are shrieking on a playground, and trees are rustling in the wind. I decided it wasn’t a challenge worth taking, so I let go of the anger. The anger of course was more with myself than at any one in particular, and the more I lost myself in the surrounding world I love to which I’ve always belonged, the world of earth and wind, water and trees, laughter and song, I forgot the meaningless chatter of the world of illusion that humans have constructed which had never been able, let alone ever had the intention, to adopt me.

 

I was now no longer angry, but disheartened and sad. I felt sad because so much of my life in this world is spent alone in isolation, partly due to my disability, and partly due to one of the occupational hazards of being a philosopher. Sad because many people are so afraid of blindness that they would rather exclude me than ever consider whether there would be value in getting to know me. Sad because this manifest world often shuts me out, and I am not the only one who experiences this kind of banishment caused by prejudice and discrimination. As I walked, I thought about how so many people, for varying trivial reasons, from race to ability, gender preference to objectifying standards of appearance, are given the message to find their way elsewhere. There are only a few groups of people for which this world is truly made, but none of those who have been rejected have ever thought to band together, to find commonalities among their differences, including the fact of their differences, and create the communities they long for. (More on that later.)

 

I thought about how I was sad because most of my ways of belonging rarely, if ever, fall within any shared reality I have with others in this world. Some part of me still remembers the world I would have gone to at six months of age if I hadn’t wanted to see what life was like instead. A part of me still recognizes that world as home, and has never adapted to this one. A part of me has always belonged their more than here.  As an adult, I walk both worlds, one foot in each of them, belonging holy to neither, and for that I am a wanderer. In a way, it was no surprise that I wanted to try to create once again somewhere between this world and the next a place where other wanderers like myself are welcome. I’d still like to do that, actually, but not at my house.

 

As these thoughts went streaming as they always do through my head, I continued walking through the park, watching the motion of the water, feeling the branches of trees waving over my head, and noticing all the people who were also walking out on this beautiful autumn afternoon. That is when I saw Oisin walking toward me, not particularly on the road. I looked up, and our eyes met.   Much passes between people without words. And so it was then, an exchange of all each of us was in that moment, which would have taken embodied humans several days to talk through to the end.

 

He walked over and took my hand. For a long time we walked in silence this way, I between Allegro and Oisin, connected to both of them. The quiet calm compassion that Oisin has for all living things seemed to wrap around all three of us, and I felt at peace, more at peace than I could remember ever feeling. Any sense that I was less than anyone had simply vanished. Any trace of feeling like a wayward orphan who neither fit in, nor could make sense of the world had vanished also. This was unconditional acceptance, and I knew I was blessed to experience such unconditional belonging while in this world. It is the belonging we all share in the world beyond, and it was not just mine to look forward to, but mine to have, here and now.

 

Holding hands with an otherworld person is a unique experience. It’s obviously not like holding hands with an embodied person. Unlike human hands, otherworld people’s hands are cold and also obviously lack any density or definition. Though my hand felt cold, it didn’t actually drop in temperature, and it felt almost like it was about to fall asleep without the unpleasantness of actually falling asleep, like there were currents of energy coursing through it. I was fascinated by the experience. Somehow we could reach each other across worlds, world boundaries notwithstanding, as if, I thought, such boundaries were only precursory or nonexistent.

 

When I’d completely become grounded and he thought I was all right, Oisin let go of my hand and started walking a bit ahead of me, now actually following the road. I smiled at that. In order to hold my hand, I realized, he’d had to walk through the reeds and other plant life lining the path down to the water, and at some points he would have been actually walking in (on?) the water. I was impressed, though I suppose it made no difference where he was concerned. No embodied person could have pulled that off. There were advantages being an otherworld person, I mused, even if you can no longer enjoy manifest world food.

 

We’d been walking together for a few minutes more when a thought occurred to me, one which I admit I’d never before considered. The thought was this. Here I was, walking with Oisin, and he not only was from another world but had lived long, long ago. Surely he’d know things I never would have imagined, and I hadn’t thought to ask him any questions. I could ask, I realized, any question I wanted, though I might not get an answer to every question I could ask.

 

For a moment I thought hard about what kind of question I’d ask such a one. Perhaps not a question about his, or even our, past, I decided. I did have endless questions about the past, but felt that any answer to such questions would be information only, and I wanted to ask something of more permanence than mere information.   I realized too that like most people he wouldn’t be able to answer a question about the future, mine or his. I wanted to ask an experiential, not just factual question. One that could transcend languages and time, cultures and conceptions of the good. I already knew we had some philosophical disagreements, and wanted to avoid them at the moment.

 

When I’d finally settled on a question, I asked it in pictures. “Oisin,” I asked, “Can I see the world through your eyes? Can I experience the world as you experience it?”

Inclusive Spaces Where Disability Is Simply Forgotten

Jim LeBrecht is a highly successful businessman.  He also has a disability.  You can find him on facebook here: ! <https://www.facebook.com/JimLeBrecht/posts/10152206635136182

 

<https://www.facebook.com/JimLeBrecht/posts/10152206635136182>

 

I resonated so much with his post that I’ve reblogged it below.  In this increasingly global world where inclusion is more often than not bantered about in business and professional circles, it is astounding how often disability is simply left out of the picture.  , Comments welcome.  Jim’s words follow. Unfortunately I have spent 40 minutes trying to make a blockquote with a screen reader to no avail, so just imagine that the text is quoted. Yes, this is ironically an issue of inclusion happening right here, right now.

I’ve started a conversation with a friend and came up with this thought that I want to share:

When you tout your workshop as being inclusive so that you can spread your knowledge about being an entrepreneur to underserved communities and you hold it up a flight of stairs, then you do more harm than good. Especially when you tell the group there that it’s more expensive to find a place that is wheelchair accessible. The attendees, some of whom will build businesses won’t see the qualified and smart folks with disabilities in the class with them. They won’t meet the people that have to improvise everyday and are good at problem solving on the spot. They didn’t have me there, the guy using the wheelchair that has run his own business for 18 years and has been a manager for over 30 years.

When you make an educational video that shows the harm of stereotypes in your profession and you don’t include one person with a disability, you tacitly say that it’s not important to include those with disabilities. Someone forgot to include us in the script. Why does that happen? The filmmaker is a wonderful, talented and very progressive person. I love that filmmaker. Will that person hate me for posting this if they see it?

When you build your urban farm but don’t put in a ramp to your offices, as much as you say you are for inclusion, I only see it as a slap in the face and a barrier for people like me to participate. I’m not wanted there.

What have we been fighting for all these years if the excuse is that they forgot to include us? Or that the money for access was better spent elsewhere.

It’s not hard how to figure out how to include us in your world. Think about how you want to be treated and then apply it to us. I’d like to sit in a wonderful location when I go to the movies. Well, put the handicapped seating there, not in the back of the theater where the latecomers come and go and the lobby noise destroys the film. (A special shout out to the wonderful Castro Theater).

 

Raise the money for the ramp so that you can afford to pay for a ramp and the health coverage of your employees.

 

Look around and see who is underrepresented and ask yourself why. And then ask how you can change the status quo.

 

I want my lawyer to understand my world. Will he or she understand if they don’t have a disability or of there is no one on their staff that can provide the needed perspective of my community? Are the disabled part of the bar association’s plan for improving diversity?

 

I want my doctor to be smarter about my disability because they have had to live with one themselves.

 

And I want to stop living in fear that if I ask for too much that I’ll be shut out of working at a facility that can make my career better than ever. I’ll be asking this later this week at a meeting. And it worries me. Is my talent and contribution going to be seen as a bigger asset than the cost of making a screening room a place where I can sit in the middle of the theater?

 

This fear won’t go away until people stop looking at inclusion as a problem to be dealt with. And I’m not saying that it should be done because it’s the right thing. It’s not about morality. It’s about doing the smart thing. It’s about being willing to invite everyone into your world so that you can both learn from each other. Can we look at inclusion as something positive where you find you are unearthing wonderful people and fresh ideas?

 

As my friend Lawrence Carter-Long <https://www.facebook.com/LawrenceCarterLong>  says, “Nothing Without Us.

A Not So Ordinary Day

I have been having some very challenging spiritual experiences lately.  I’ve already been writing about them here.  Dare I suggest, however, that living in this world as  a young woman with a disability who has the wherewithal and presumption to live out loud regardless of her blindness, is actually more challenging.  I had a medical appointment yesterday, which –and I know this is strange– I was looking forward to because it meant getting myself out of the house, into the world, and closer to having dinner with my mom. 

When you are blind, there are only a few options you have for traveling over 25 miles.  First, you can take public transportation.  In my case that would be two hours plus a disorienting stay on a BART platform overlooking a freeway.  Alternatively, there is East Bay Paratransit, which takes you door to door.  I chose what I supposed was the more sensible option and took the disability service.  This was a terrible, terrible mistake. 

 

Now, I have several important values I seek to live by as much as humanly possible.  One is to keep my commitments.  Another is to arrive on time.  A third is to follow through with what I say I’m going to do, be there when I say I will be there, keep appointments, show up when needed or when someone is expecting me to show up.  Yesterday I left Berkeley at 2:30 in the afternoon to get to Walnut Creek by 4:40 PM. Two hours and forty minutes later, after picking up five people one of whom didn’t have his fair, after transferring Paratransit cars, and after the gods only know what else was making us travel like snails traversing Mount Everest, I got to the building where I had my appointment.  I did not say I got to my appointment, because it was fifteen minutes past closing hour when I walked through the door.

 

Like any sensible human being, I was irate.  Unlike most people I suppose, instead of being angry at a company that had failed *it’s* commitments, I felt like a personal failure because, regardless of the reason, *I* had not made my commitment. .  You see, it does not matter to most people in this world why you are late, what your story is, whether you have fewer abilities, more challenges, a crappy childhood, whatever and so forth.  What people care about is that you show up on time, you do your work, you act as normal as possible, you respond to everything cheerfully, and you do what you said you would do come hell or high water.  I felt like I had been given an unpleasant glimpse of hell, and given the choice I would have settled for the high water because California is going through a pretty bad drought. For the shortcomings of missing my appointment, wasting my day, wasting mine and others’ time, coming across as a flaky and unreliable human being, I blamed myself.

 

I am writing this account here for two reasons.  First, perhaps it is time to cease blaming ourselves, if we have disabilities, for things that are strictly other people’s and agencies’ problems.  It is too easy to move on from blaming ourselves for one thing to expanding the blame to all sorts of things whether or not it is rational to do this.  We owe it to ourselves to draw a large distinction between our own principles and values and how we do everything in our control to live by them, and the world’s increasing obliviousness to the concept of taking responsibility, and the values of community and connection, especially surrounding services for people who have atypical needs.  Secondly, I want to publicly fault a service that is based on inefficient protocols, is not run well (perhaps because no one suspects that people with disabilities are noticing?) and fails to consistently provide the support it purports to offer.  In no way do I suspect that I am the only person who has missed something very important because she relied on a service which is ten times less reliable than those services procured for the general nondisabled public.  In my opinion such discrepancy constitutes discrimination and confers approval on the hegemony of normalcy.  We people with disabilities are made second class citizens in part because the most prosperous country in the world cannot muster up the funds, tolerance, and respect, nor take seriously any policy changes that would reflect tangible adequate solutions, needed to give us equal opportunity.

 

What if I had been a quadriplegic who could not take BART as the obvious alternative to relying on the unreliable?  What if, instead of missing a medical appointment, I instead missed my mother’s funeral?  What if I just didn’t get to my best friend’s wedding–sorry. What if I missed the birth of my brother’s baby because Paratransit and it’s affiliates took three hours to go the distance that a car enabled person could travel in 40 minutes?  I am lucky that I was the least disabled of anyone on yesterday’s ill fated Paratransit ride.  I am lucky that I have family and friends, and I am learning the art of self-forgiveness.  Many are not so lucky. 

Perhaps my telling this cautionary tale will bring awareness to the general public of just one of the myriad possibilities preventing those with disabilities from showing up for themselves and others in their own lives, being on time, and ensuring as often as possible that the circumstances of their outer worlds match the strong and respectful soul they are inside.  Next time your friend with a disability is two hours late, or your coworker with a disability once again fails to come to work on time, make sure to remember compassion and realize that more often than not the world they had to travel through to get to you did not allow the light within them to shine through.  Here’s to changing what is, so we can fully become who we’ve always been.