Just Delivery

If you are paying attention, recall that I have written of how ALS circles around, how just when a suitable strategy for dealing with the current reality emerges, how just when the day to day living becomes something routine enough to handle, how just when comfort in the new normal is almost old normal; one more piece falls away, and the circle morphs into spirals down and down. I have written of circles delivered in packages sparkling with new knowledge or laden heavy with despair, packages complete, with no room for negotiation, no space for discussion, no rejection, no acceptance. I have written about how circling back is not for the faint of heart, for even today, five days after the event, with visits and dinners with dear friends and time with family in between, with the opportunity to physically process and psychically work through the latest loss, I am still amazed at how insidious my dis ease teacher can be.

It was the smallest of things.

I just finished a phone conversation with the editor for the MDA ALS newsletter. She had suggested that an occasional sampling of this blog might be good for persons and caregivers in the ALS arena. You may or may not realize this, but I am sensitive to anything that might be perceived as me speaking for more than me. It is not my intent for this blog to represent anyone’s experience but my own, for that is the only experience for which I can claim any deep knowledge. So I was concerned that in sampling the blog, I might be seen as overstepping the boundaries that I have set for myself. Such boundaries weigh heavily, and I take them very seriously. I am also very aware that for a number of people who read this blog, these descriptions of my experiences are close enough to their own experiences that voice is given where voice might have been silent. In the end, I agreed to the sampling due to her understanding and sensitivity to my concerns. It was a nice conversation.

And then…

My phone is on a piece of Velcro that sits on the right arm of my power wheel chair. It is not the most ideal placement for a phone. Sometimes when it rings, I have great difficulty getting my arm twisted around to slide the unlocking mechanism and answer it. Other times my arm is resting over the phone so that it is totally inaccessible. Usually I try to hold the phone so that I can point the microphone toward my face, as I lack the arm strength to actually bring the phone up to my ear. All of this is to say that were you in the field of risk management, you probably would have easily predicted some minor disaster with the way that I do the phone. Five days ago, I was just weak enough after the aforementioned telephone conversation, that as I tried to place the phone back in its right arm position, it flew over the side of the chair. In my effort to keep it from falling to the floor, my right arm became wedged behind the chair’s arm.

And there I sat.

This has happened to me before, so I didn’t panic. Instead, I tried all manner of ways to get my arm back on the chair. I tried turning my upper body, grabbing the leg guides with my left hand and pulling myself forward, flipping my right arm out and forward, even quasi-fishing my hand up with the seatbelt in order to get it back on the arm of the chair. After about 10 minutes, I realized that I was actually in real trouble. My arm position meant that I could not change the position of my body, which was leaned in just the right way as to constrict my breathing, and with it being my right arm, I could not reach the controls for the chair. I could feel my hand and forearm swelling with the gravitational pooling of fluids so that my fingers would not bend, and awareness slowly bloomed into the full consciousness that I was caught, trapped, unable to breathe deeply, unable to move, unable to perform the simplest of acts.

I watched the time tick forward, one minute, five minutes, one hour. Every once in a while I thought I heard someone walking in our building, and at that point I would yell as loudly as I could, “Help, help, help, help!” I soon realized that this yelling was pointless. It was just tiring me out, and making it more difficult to yell when the time might be right.

So I waited.

An hour and one half after my arm’s tumble, I heard the UPS truck pull up, I heard the rolling door clatter open, I heard the deliveryman come into the building, and I held my breath. Would he bring the package up to our condo? Would he ring the bell and dash off as he often does? Would he come to my floor, to my side of the building? I knew that I couldn’t allow him to get away. I started yelling, and when the doorbell rang, I redoubled my efforts, yelling at the top of my voice, “Help me, help me, please open the door and help me!” And this very kind man came rushing in, “I’m here, I’m here. Tell me what to do.”

I’m sure he was puzzled that all I needed was my arm lifted back onto the chair. I’m sure it seemed like such a tiny thing to him. I’m sure he had no realization of the relief that he offered, breathing and mobility and comfort. But he did it, and I spent the rest of the day seeking some equilibrium. My hand was quite swollen and did not want to operate the wheelchair controls. My body overheated with the exertion of trying to free myself, yet once I was free, sweat evaporated into shivering, teeth rattling, frozen to the core coldness. And when Ev came home, I was so relieved to see her that I burst into tears.

Welcome to the new normal.

Today, I know that our plan, our strategy to try to get me through to the summer at the level of care I currently receive, is not going to work. I am just too helpless, and I hate it. From now on, I need to make sure that somebody is around, at least checking in, just in case. In essence I have turned a corner into a new level of ALS. It seems like just yesterday I had chosen to begin walking with a cane. It seems like just yesterday that I gave up driving. It seems like just yesterday that I accepted that I needed homecare assistance. And today, I have to accept that the assistance that I need is far more significant than the assistance that I want.

I have no words of wisdom or philosophy, no frameworks from which I can turn these cold truths, no spaces of healing or warmth or acceptance from which I can approach this new reality. It will come, at some point it will have to come. But today, I am just shaken up by how easy, how fragile, how fleeting this gift of living is.

And that is quite a package to have delivered.

The Snake

This was one of those weeks where sadness lay just beneath the surface, like ice melted from a lake yet still lurking beneath dark waters where the sun and wind cannot reach, bobbing up from time to time and breaking free of the liquid above, and then sinking back just beneath to keep the waters cold and impassable. I was stalked by my feelings like ice–perceivable, tangible—testing my skills at holding grief for the past and fear of the future at bay. When I get this way, there is nothing to do but accept the sorrow, hunker down and know that anything has the potential to set me off. This is the way of dis ease. A couple of weeks ago, a dear friend asked me if I ever just have a bad day. She was a few weeks off her own surgery; her own recovery dis ease, and her question was urgent, like an itch just out of reach. I held her hand and said, “Yes, yes. Without a bad day, there are no good ones.” I should have told her about snakes.

I’ve never been particularly afraid of snakes. Growing up, I loved the garter snakes that lived around our newly minted housing development, and I loved more the stories my dad would tell about corn snakes in the barn of his youth. As a young science teacher, he taught inner city kids to catch black snakes and hognose snakes near the river that ran through our town. Nothing holds a seventh grade boy’s interest like a snake eating its meal—wise teaching on my dad’s part. When we lived in Egypt, we were aware of the deadly mambas out in the desert, although I never saw one. I did see a number of hooded cobras in Thailand, and the thrill of them was both tingling and breathtaking. We learned not to step on sticks in the dark as one could just as easily have been a cobra out to warm itself or worse, a green mamba, one of the deadliest snakes known to our world. As a boy, I returned again and again to Kipling’s The Jungle Book and Just So Stories with particular love for the stories featuring Kaa, the great 30-foot python and friend of the boy Mowgli. I assure you that my version was not the Disneyesque lisper–just scary enough but not too, titillating the little ones but not overwhelming them with fear. The Kaa I imagined was formidable, strong, deeply disciplined and powerfully loving. I loved Kaa’s mysticism, and I loved how Kaa could talk with the boy Mowgli in a way that his guardians, Baloo the bear and Bagheera the panther could not. Kaa spoke a truth to be considered or disregarded, and this is why I think on him now. Where the bear and the panther pushed Mowgli to become conscious of the fact that he was indeed a man, Kaa merely said, “It is difficult to shed one’s old skin.” Kaa, a great teacher, offered just enough information so that the man-cub’s curiosity was piqued, but not so much as to overwhelm him. Best to stoke the imagination and inquisitiveness and then let things happen, was Kaa’s method, and it was ultimately the best way.

Kaa tunes me into the teachings of snakes, and now the snake offers a conception of sanity in such a week as this when the realization of new lost skin cannot be denied any longer.

Here is the recitation, the litany—I told you long ago I would keep you up to date. Like a snake, lethargic and irritable, I now shed the last concept of me for a new one, defined by iterative losses that caress my psyche with angst and apprehension and pile up dis ease’s loving gifts. How does it love me? Let me count the ways. Standing for any time longer than a few seconds is an invitation to fall. My ability to transfer–to get up even if I am able to transfer, to get into bed without the help of another person, to get out of bed without assistance–all of this is now compromised beyond reclamation. I cannot reach out with my arms; they must stay in contact with my body or some support surface, seriously affecting how I eat or reach for something just out of hand’s range or place a folder in the out-basket or cut my food or shake hands. And my fingers, my tactile connection with words and writing and thoughts and emotions and the turn of a phrase and the joy of a scribe, no longer behave with any facility that resembles normal working hands and arms and brain. All of this has become in your face reality and not some unconscious abstract irritant. It requires grieving and quickly, redefining such basics as humility and modesty and sufficiency.

I relate to the shedding of skin in so many ways. Snakes become irritable, lethargic, losing their appetite and lying with milky eyes as their bodies seek to throw off the old and bring on the new. It takes a lot of energy to shed the old skin, with the final act a physical scraping and twisting as the snake rubs and scratches against sticks and rocks that will aid the metamorphosis. In spite of their physical discomfort, it is the way of snakes to shed so that a new skin can emerge. And ironically for some reason, with the week that has been, this concept of shedding for growth comforts me. Just as shedding is the way of growth for the snake, my growth in physical loss is the way of dis ease.

Dis ease sheds capacity, and while that shedding seems far too easy, it is what frames each evolving iteration of loss that I now experience. Since my first physical symptom, I have come to realize that from time to time, I must completely reboot, shedding the old concepts of what it means to have ALS like the old skin they have become, and embrace the new losses as progress, usually with some physical struggle and emotional upheaval thrown in. ALS has changed me. Dis ease has depleted me. I can mourn each loss, but I must not allow myself to become comfortable on the new plateau where it lands me for that is not the way of life we are granted.

Friday night, Ev and I settled in on the movie Extremely Loud and Incredibly Close, and shedding’s reality came home to roost. While I found the characters extremely compelling, and I stuck it out in spite of the fact that I don’t do sad movies very well any more, my reaction was just another indication of how I have changed since ALS came into my life. I can think of all kinds of indications—there is passion underneath dis ease, there is overwhelming joy, there is sadness—all translated into one of the few physical acts I can still accomplish; holding myself together. And the fact remains that wet tracks, hot and acidy, inspired by the events in a made up story just real enough to believe, furrows hidden by practice, but always there to the practiced eye, appeared on my face–where the tears have been, where tears continue, where tears will be.

But in the watching came another realization. There is a line in The Jungle Book, “We be of one blood, thou and I,” the universal greeting that when spoken, ties the speaker to those with whom she speaks. Dis ease is a universal greeting as well, and it opens the doors that we all share in this earthly existence—death and birth frame our lives. Thus, I can be dis eased and alive, accepting what will happen in its own time, paying just enough attention to stay ahead, but not so much as to overwhelm, and in the end, moving beyond the paltry lengths of temporary ability into the skin of one who must continue to grow. It is the way of the snake and the way of dis ease, and it continues to tell me that I must meet loss with growth, all at the same time, until I can no longer meet it.

And maybe then, I’ll just shed my skin and leave it far behind for another to find.

Writing It Down

I was watching The Jay Leno Show last night, trying to get up the strength to go to bed. Usually, I watch the other guy, but I wanted to see this one because it was a rerun of an October show featuring President Obama. Don’t worry. I’m not going to talk about the presidential election. What was of real interest to me was the fact that Leno also had the musical group consisting of (I think he has had his name changed to include the moniker) “The Great” Yo-Yo Ma, Chris Thile of the Punch Brothers, the sublime singer Aiofe O’Donovan, Stuart Duncan—one of the most accomplished bluegrass musicians on earth, and Edgar Meyer—brilliant, eclectic bassist par excellence. They performed “Here and Heaven,” one of the best tracks from the album, The Goat Rodeo Sessions. If you download The Goat Rodeo Sessions, there is a ten-minute video about the recording process that brought these vastly different musicians together. It is fascinating. While each of the four string players has their own expertise, the melding of alternative bluegrass style with the eclectic cello of Yo-Yo Ma requires enormous imagination. I love how this comes together, how fearless the musicians are.

One of the issues in putting together a recording like this is that not all of the musicians read music. So when they recorded, there was Yo-Yo Ma with his music stand and the entire score written out in front of him, while in contrast was Stuart Duncan, navigating the same pieces of music using only a yellow piece of legal paper with a few cryptic notes. And if the decision had been made that a prerequisite for the musicians in The Goat Rodeo Sessions was musical literacy, the magic of this recording would never have happened. Jack-of-all-trades musician Stuart Duncan would never have been allowed to play the session. Yes, he is an outstanding musician. His ability to move seamlessly between the backless five string banjo, the fiddle, the mandolin, and back again is in my opinion, what makes “Here and Heaven” such a powerful track (Aiofe, pronounced eee-feh, O’Donovan’s singing notwithstanding). But he is the heartbeat of the piece, and in order for him to learn the music, the other musicians had to go out of their way to teach him his parts.

There are a number of ways to interpret Stuart Duncan. We could look at him as a talented musician, full of vision, providing unity of insight and broad variety of instrumental timbre to the recording. I know when you first see the video, it is overly easy to focus on the work of Yo-Yo Ma or Chris Thile or Edgar Meyer. After all Yo-Yo Ma is Yo-Yo Ma. Chris Thile fronts the group on much of the album, and Edgar Meyer is able to switch style gears mid-piece so fast that he leaves your teeth in your socks. Aiofe O’Donovan salts two of the tracks with her clear, breathed straight tone. But it is hard for me not to be really affected by what Stuart Duncan brings to the sessions.

Another way to interpret Stuart Duncan is that he is disabled. He cannot read music. He is reliant on his fellow musicians in order to learn the songs. He does not pull his own weight. Perhaps, he is more trouble than he’s worth. After all, he could have learned to read music. He could be contributing his fair share. Why should the other musicians have to go out of their way to teach him the parts? If Stuart Duncan cannot read the music, then perhaps we should get another musician who can. The disability lens forces us to focus on what Stuart Duncan cannot do. It is a deficit model. And it encourages us to punish Stuart Duncan for his deficit. What a mistake that would be!

I have written before that disability is a social phenomenon and that the greatest disability I perceive in my dis ease journey is what others think I cannot do. This does not mean that I do not have significant impairments. I do. I cannot walk. I tire easily. My hands are weaker. But these are just physical impairments, and there are numerous strategies around them. Others can assist. Ev helps me get my socks on, make breakfast, remind myself that I am no less a person because of my physical weakness. It would be a mistake to put me out to pasture, even though I require assistance because I have much to offer, just as long as I can get dressed.

Not all of us can be Stuart Duncan. Not all of us carry the enormous talent that Mr. Duncan so obviously exhibits. Would that it were so. It would be much easier to argue against a social model of disability and dis ease if everyone was so capable. Yet, even if we all cannot be as able as Stuart Duncan, it is worth it still to deconstruct the social model of disability. The least talented of us all, nevertheless carries human gifts well worth the effort of helping them emerge. Just as Mr. Duncan is able to rely on his musician comrades, so should each of us turn to one another to assist us to reveal the beauty behind our own individual impairments. The bass player, Edgar Meyer observes, “What really brings the piece to life usually is the way that the people interact when they play it.”

The song “Here and Heaven” ends with the following line:

‘Cause we are not lost enough to find the stars aren’t
crossed why align them why fall hard
not soft into
Fall not winter spring not summer cool not cold
and it’s warm not hot have we all forgotten that
we’re getting old.

When you have ALS, you recognize very quickly that, pardon the pun here, “Time is [NOT] on My Side.” There isn’t a lot of time. But like “Here and Heaven” says, “have we all forgotten that we’re getting old” so how really do we want to spend our time? Edgar Meyer (who kind of emerges as the philosopher of the background video) states early on, “Yo Yo’s going for the same thing that Stuart is going for, which is to internalize the music—there’s just different ways in.”

I guess that speaks to me. As human beings we are given the opportunity every day to celebrate the different ways in. And the opportunity for celebration, that very same opportunity, can be used to dehumanize and exclude. We are offered a myriad of choices of how to internalize each others’ humanity, projecting it out in engagement with the great collective of our brothers and sisters. Or, we can remind people of what they cannot do, why they don’t deserve extra support, why it is extra work for us to assist, or why they should be punished for their lacks and disabilities. But disability has taught me that humanity is far richer, far more colorful, and far more remarkable than such deficit thinking, especially if we put our effort into its emergent beauty. That is what these musicians do, without even thinking about it. If the problem is reading the music, then teach the songs by rote, playing to the talents that each one brings, recognizing that they are “going for the same things.”

And maybe, just maybe, a Stuart Duncan will appear and play the spit out of a fretless, backless five-string banjo, breaking our hearts with the human beauty that he pours onto our lives.

Here is a video of “Here and Heaven”

Here is a video of “Inside The Goat Rodeo Sessions

Happy Birthday Stephen Hawking!

As a child, I idolized professional athletes. When you grow up in Indiana, it is difficult not to want to be a basketball player, and although I was never as good at basketball as I wished I could be, I loved the game and I loved the players. Probably my favorite player was Bill Russell, center for the Boston Celtics. Skillful, savvy, and just a little bit irreverent, Russell was everything I admired in a player. I used to tune in to the professional basketball games on our fuzzy black-and-white TV and watch tiny avatars of Russell and Wilt Chamberlain at war with each other. Clearly, Chamberlain was the more talented player. But Russell would always win, at least it seemed that way. Although he gave away significant height to the taller Chamberlain, it always looked like Russell got the better when the two went head-to-head.

As I grew older, and especially after I became involved in music, I idolized the great singers. I still love listening to Bubbles, Beverly Sills. Intelligently funny and remarkably talented, this wonderful soprano was great on the talk show circuit and a kick to hear. As a young singer, I couldn’t get enough of Placido Domingo, Luciana Pavarotti, heck I even enjoyed listening to old Richard Tucker records. When I was in high school, I jumped from acid rock to recordings of Stravinsky almost in the blink of an eye, and when I discovered Dietrich Fischer–Dieskau, I thought I had died and gone to heaven. Maybe it was the fact that he had recorded all the Schubert Lieder with the great accompanying pianist Gerald Moore, or maybe it was the fact that he was 6 foot 7. I idolized this guy.

We learn from role models. They inspire us to look inside ourselves for things we may not have realized we could do, and they show us ways to accomplish our inspirations when no other way seems apparent. And this week, I’ve really been thinking about role models, especially role models for dis ease. I probably shouldn’t go here, but I cannot help it. I have watched our media present the story of a young man in the Twin Cities, slammed into the boards during a JV hockey game resulting in a severed spinal cord. I am so saddened by this young man’s new reality, and what I see happening with his story is unfortunate. The Able Bodied Media can handle it if he is a superior young man with disabilities. What isn’t a great story is the everyday hard work helping him to build a life within the remarkable circumstances in which he finds himself. Medical expense is just one part of handling physical impairment. So I ask, where are this young man’s role models? He has joined, not by choice, a whole new group of people. I am hopeful for his medical bills, but I ache for the social, emotional, and physical challenges that face him. There will be all kinds of guidance, but role models will be hard to find.

I’ve joined a whole new demographic, and I realize that there isn’t a lot of discussion about idols and role models with my new peeps. Who do people with physical impairment look to for how to live a life that makes some sense? Our role models are few and far between. I don’t think it can be people like the late Christopher Reeves. He played the “super-crip, let’s find a cure” card one too many times and really did not seem interested in exploring meaningful life within the confines of his physical impairments. It isn’t that I don’t appreciate his work and the research foundation that he started, but the fact is that cure is so specific, and impairment is so manifest in its requirements for getting through the day, that role models are just not that apparent. And I think there are real, unfortunate consequences for this.

A very interesting experience for me is the new acquaintances I have made as I roll through the skyways of Minneapolis. In the past, I don’t think we would have given each other a second look, but now I find myself making eye contact with a whole different group of humanity. There are other rollers. We never speak, but we do make catch a look and there is a knowing smile that we share. And the guys (yes, mostly guys) who used to hit me up with “Hey I’m just in from Chicago on the Greyhound and my girlfriend and kids in the car over there, and if I could just get 20 bucks I could get them back to Chicago…,” instead just say, “how ya doin’ my man?” And the older immigrant gentleman communing with the spirits of his ancestors while walking the skyway around the Convention Center gets a little quiet when I roll up. He actually smiled last Friday when I came up to the door opener on which he was leaning. Then there is my favorite musician—with a face ravaged by alcohol abuse, but the creativity to sing ironically about Tim Pawlenty and Michelle Bachmann. He actually talked with me, making comments about the lack of parenting skills we had both just witnessed.

I have talked in the past about the weird alignments I notice in my own dis ease journey, and this week is no different. Juxtaposed to my experiences in the skyways, is the fact that this week, the great physicist Steven Hawking, turned 70. He is one of the longest-lived persons with ALS that we know, having been diagnosed when he was 21. Now, he has reached the point where he must have round the clock care, for his ability to control any muscles at all is reduced to one muscle in his cheek. He uses this muscle and a laser dot to compose on a computer that speaks for him. It can take 10 minutes to compose a sentence.

I don’t want to be like Stephen Hawking–I really like my marriage for example. But I look to him as I think about where this life of mine is headed. He has managed to write, to research, to communicate, and to offer serious explanations for the way our universe works. All of this has been while managing ALS. I have heard media discussions of him in which his physical infirmities have been used to define him, yet most people, once they get to know his story, refocus on the great thinker that he is.

This is where things get a little confusing. I’ve joined a demographic that has no choice but to deconstruct the images carried in the heads of others. The power wheelchair has become as much a part of me as the color of my skin. And here is where the experience is really weird. This new demographic has less privilege, less consideration, is more vulnerable, and must manage day to day living with great care and planning. Believe me, I know that I am not homeless, or substance addicted, or down on my luck, or communing with my ancestors. Yet I find a real connection, sometimes no more than a glance up and down, with my fellow humans with which I have been sharing the skyway. And we find ourselves needing to deconstruct pity, and misconception, and obtuseness, and even hostility. That doesn’t mean everyone approaches us that way. I am so thankful for the human love and the willingness of my friends and colleagues to allow me to define my space, but really—the fact that many often speak in a loud voice and quite slowly tells me that humans in general really don’t have a clue about dis ease, disability, and impairment as humanness.

So maybe Stephen Hawking offers us at least the beginnings of a role model for living with dis ease. I don’t mean this to be hero worship. That is an immature concept, for all of us know that no human being can live up to the irrational expectations we put on our heroes. We would be better served to learn to admire how in spite of the flaws and foibles of being human, we can still find a way to raise ourselves above our own paltry expectations. What great role modeling that would be!

Happy Birthday Dr. Hawking. Because of you, I imagine myself through my fears, even as dis ease advances. You have shown us a way, a humanity that most would not choose, but that all can admire. It would be great to meet you. We could talk basketball or music or physics. Maybe you’d be up for a roll through the skyways of Minneapolis, perhaps to hear, “How ya doin’ my man?”

New Year’s Resolution

It is New Year’s Day, and I am reflecting on a beautiful vacation day spent with Ev. We didn’t really do any thing special except run some errands, look at bathroom tile for the condo, and pick up coffee and fish at our favorite St. Paul locales for both. We ate Thai leftovers for dinner from our favorite Thai restaurant (now with a second location just blocks from us). We finished the day off watching Benjamin Button, a slow and undulating film that we had not seen since we watched it in New Orleans the year of its release. Like I said, the day was nothing special, except that today represents what I would take more than anything else. It seemed so normal–hard to attain, and almost impossible to maintain–and when we get such normalcy for whatever reason, life seems just right.

Just right is a social construct, and this year it is my new year’s resolution to remain just right as much as possible. This will require great energy. This year, I know that while I handle new physical impairments, I will need to pay more attention to the social meanings of disability so that just about everyone I know, especially me, will have to figure out what is impairment and what is disabling. Thus far, I have managed to manage. I have taken the physical and emotional challenges thrown my way and with the support and encouragement of a lot of knowledgeable people, found ways around them. For example, I now drive a ROLLX van with a retractable ramp. Why? So that I can get my power wheelchair into the van to take me places. Why? ALS has caused my leg muscles to atrophy so much that I cannot walk. A power wheelchair and a van are two of the tools I use to continue to be a part of a greater community.

As I reread the above paragraph, I am struck by how matter of fact it sounds. I write stuff like this now as if I have always had ALS, and that it is the most normal thing in the world. And if I could approach it as only a medical issue, to be managed with a medical response, I suppose this would be all right. But it isn’t possible to live with disability without experiencing its broader social implications, and this is where a day that is just right, is just not that easy. There is more to dis ease than a medical condition. There is the social experience.

Bradley Areheart, in a 2008 legal brief about the Americans With Disabilities Act (ADA), contrasts the meaning of disability defined by the traditional medical model with the social meaning of disability. He states,

“… being “disabled” depends upon deviation from society’s construction of corporeal normality. Moreover, the experience of being a disabled person consists largely of encounters with the many barriers erected by society-physical, institutional, and attitudinal-that inhibit full participation in mainstream life. One upshot of the social model is that the experience of disability is not inherent or inevitable given a particular medical condition; rather, it depends upon the particular social context in which one lives and functions.”

In other words, physical impairment is only one part of the disability experience. There are social attitudes that can be just as disabling as the actual impairment. What I have come to learn is that the fullest extent of my own disability is only realized by the social assumptions of what it means to be disabled. I have sought to deal with this phenomenon by being somewhat transparent about my dis ease journey, letting you in on the processes I’ve used to negotiate my medical impairments. In that process, I have also shared my initial forays into the social world of disability. My negotiation of this world has led me to understand the difference between impairment—the medical condition, and disability—the social condition inspired by those impairments.

We all know that there are social implications to disability. For example, if we were to plan a building in the year 2012, and we were to say that the only toilets available would be urinals, I just cannot believe that questions would not be raised. Or if we were to say that all door handles and openers would only be reachable by people who can reach six foot six inches, we would say that doesn’t seem right. In both cases, we have met the requirement that there be doors and restrooms, but we have little trouble using the same logic for people with disability. If there is not an automatic opener on a door so a person using a wheelchair can easily use it, we can still say the bathroom is handicapped accessible. If we approach job responsibilities so that there is only one, able bodied way to do them, then we can say that a person with disability cannot work.

And mainstream media furthers the social construct of disability. In the book, No Pity by Joseph Shapiro (where I first learned about the TAB moniker by the way), it is pointed out that portrayals of disability in the media are usually one of two types—the horribly pitiable, crippled person who could not possibly want to live in such an awful condition, or the Super Cripple who can do anything despite the disability. I have written about the horribly pitiable in my response to Dudley Clendinen’s New York Times article about why he wants to kill himself. The idea that anyone with a severe disability would want to live with it can be difficult for an unaware TAB community to comprehend. On the other hand, look at the portrayal of the Super Crip? You know, the guy who can only wiggle his thumbs but still manages to strap on a pair of skis, drop out of a helicopter and outrun an avalanche off the top of a mountain. Oh there are other portrayals as well. On the website disabilitymovies.com, the following list of movie clichés is offered:

• The disabled person dies immediately after imparting a life lesson, inspiring the able-bodied to live their lives to the fullest.
• The disabled person offs themselves so they won’t be a burden to others.
• Blind people have superhuman hearing and can use echolocation.
• The disabled person was really faking it all along!
• Disability, especially disfigurement, is used to indicate that a character is the villain.
• The disabled person needs able-bodied people to teach them that their life isn’t over.
• People with disabilities can cure themselves through sheer force of will. If you’re still disabled after the movie ends, it means you’re not trying hard enough.

I know that offering up these observations may seem a little cynical or even raw and whiny. I speak all of this with love. This past week, I have watched my darling wife confront two different able-bodied people parked in the van accessible spot on a day we sought normalcy, because they don’t see the need for such a space, except as a convenience—short term parking–for them. These are the only spaces in which I can get my wheelchair in and out of the van, and I am sure that they aren’t thinking to themselves, “I am going to park here so I can deny a person who actually needs this spot access to this store.” It is just a blessed lack of awareness.

The greatest gift I can think of in the course of this coming year is to live a “just right” life. I am not a super crip, even though I have gone skydiving. And as I contemplate the course of my dis ease, any despair that I feel about it strikes me as normal and probably more appropriate for counseling or time spent with friends, than assisted suicide. I want to be a good husband, a good father and father-in-law, a good employee, and a good citizen for my community. I want to be a person that invites others to better spaces in their own lives. I want to be a good friend.

And in the end, my new year’s resolution, to be just right, is a social construct of good intentions and social deconstruction. Normal is different after a year of dis ease as the norm, but just right is nothing more than a good day in the life. Happy Just Right New Year everyone!

1. Areheart, B.A. (2008). When disability isnt’ “just right”: The entrenchment of the medical model of disability and the Goldilocks dilemma. Indiana Law Journal, Winter, 2008, pp. 181 – 231.