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

Living in the Edges

This week, three seemingly unrelated events have really stuck with me. In a way, they have as much to do with each other as building a house and cottage cheese, if that makes any sense, but these three things—a funeral, a movie and a wheelchair breakdown—combined to bring a mindfulness that I think I needed to relearn.

One week ago today, Ev and I attended the funeral of a dear friend. She had 84 years of good life, and the funeral was a celebration of a warm soul with an infectious laugh and a sunny smile. I am sure that was not the whole story of her life. I know that she faced tragedies—a son and a husband taken before their time, a fear that she was losing her judgment—yet, when I saw her on Christmas eve, her warmth and love was present, and I am sure she died in a way she would have scripted—chatting with a friend one minute and slipping away the next.

Two days later, Ev and I saw the movie, The Descendants with George Clooney. It is a movie that takes place within multiple frameworks—an old family needing to divest itself of its land, a larger than life wife suffering a mortal boating accident and now on life support, a husband and his daughters with very little experience of each other and having to face their frayed family relationship. There are all kinds of layers to this film I could discuss but when one has dis ease, the layer that is hard to ignore is the hospital room with the woman on a ventilator. Believe me, that ventilator takes on a size that dwarfs everything else in the room when you have ALS.

You probably think it is obvious why seeing The Descendants and going to a funeral would take on added meaning for a person with dis ease. I thought so too, as it seemed so tangible, but I just couldn’t seem to write it. It took a third event, juxtaposed to the other two, to actually shake some sense into me.

The meds that I take have to be ingested on an empty stomach, and they require a one-hour waiting period before eating. My habit is to awaken at 5:00 AM, take my pills and then find my way to the bathroom in my power wheelchair. Thursday, I hit the power button on my wheelchair only to see a locked lock in the display window. Then it shut itself off. I had no idea what this meant, although I would bet my peeps in power wheelchairs have a knowing smile right now. As I was becoming quite uncomfortable, Ev went to get my walker. It isn’t more than 20 steps from the bed to the bathroom, but this is the furthest I have walked in two months. It wasn’t pretty.

Honestly, since Thanksgiving, I haven’t given much thought to the fact that the power wheelchair is my exclusive mode of travel. I had not thought about the fact that I do not walk anymore. And it felt good–aside from the clumsy gait, the dragging of my legs, and the fact that I felt I was walking on my elbows–it actually felt good to use the walker. But I don’t think I will do it again. Every step was a fall waiting to happen, and that fact combined with my sudden realization that I was really only quasi-walking, told me that I have made the transition to the wheelchair, with all that it means, without real examination. Suddenly, without warning, I faced a little spot of grief that had gone unacknowledged. Between downloading the technical manual for the chair and talking with the emergency technician at Reliable Medical Supply, I found out how to unlock my wheelchair. What became really obvious was that I had unlocked a sense of loss, to which I wasn’t even paying attention. Wheelchair–just fine, Bruce’s emotions–unlocked, and that opened realizations about funerals and movies.

I cannot go to funerals without thinking, even at the most peripheral level that ALS is like a filter on the soul. It is a cataract that blurs one’s perception of living so that mortality colors everything. Most of us would not welcome death even as a guest, in spite of its presence in so many of our cultural representations. There are lots of ways death gets portrayed. For the adolescent in us, death is violent, unforeseen, gory, laughably without consequence. For the romantic, death is little vignettes of totally unrealistic sweetness— eyes closing, last breaths sighed, uplift through the happiness of those left to go on—it gives the audience relief. Even the least thoughtful of us would say all this is pure Hollywood.

The Descendents defies Hollywood convention. Within the very real setting of a mother in a permanent vegetative state, is the slowly dawning reality of a family coming to grips with its own history. In this respect, the movie is remarkably realistic. For them, death brings reflection, self-examination, and retrospect. And this inspires rewrites of the stories and narratives that hold them together. In The Descendants, death inspires a form of negotiated memory, and it helps the family, both immediate and extended, move on with much more attention to the details that will just give them a shot at a good life together.

Forgive me if this seems morose, but this is my reality—living in the edges of dis ease. As the Sondheim song goes, “Every day a little death.” This is not necessarily a bad thing, but it requires full attention. I attend a funeral in celebration and mourning of a lost friend, but I also feel like I am on the outside looking in. There is this realization that funerals are for the living, and I am dying, and even though most of the outward and inward indicators point to the fact that we are all heading in the same direction, I end up paying a lot more attention to this stuff than I did before. I have to tell you that carrying such realization does not make you the life of the party.

And what really frightens me is the fact that even though loss is inexorable, I had gotten out of the habit of examining it. I can look back, even in the last month, and point to things that I did for the last time, without ever acknowledging it was for the last time. Nowhere did this become more apparent to me than with my locked up power chair. I truly depend on it for the simplest mobility. The death of a friend, a movie filmed on the set of a ventilator, all of these jarred my normal consciousness, telling me to attend continuously to these unique gifts, in spite of the fact that they represent a direction to which attention is not easy to turn.

You are probably wondering what the point is, or if there is anything new to be learned from this. I’m not sure, but I think it actually has to do with learning. The requirements of learning never stop. Each day, each “little death,” each paper cut, each new challenge requires new skills, new attention, new attitudes, until one day you are unable to handle it anymore. I guess that is the point for me. This past week jarred me into renewed consciousness, although I thought I was awake. It wasn’t pleasant, but it was the gift that makes my dis ease journey one that I know I can make.

Maybe I should see another movie, or at the very least, have a cup of cottage cheese.

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?”

Just How Long?

When you have ALS, one of the most realistic, yet surreal questions you ask is “Just how long?” “How long” applies to everything, from the time left to still tie your shoes, to the time you might be able to still kiss your true love. It is part of the DNA of dis ease, because the answers are generally known, but not specifically understood. I have been doing a lot of thinking about “just how long” this past couple of months—partly in exploring what kind of professional life I have left to me, partly in wondering just how much more adventurous the bathroom will get while we are waiting for our condo to be built out—and “how long” has acquired new meaning well beyond its temporal considerations. “Just How Long?” lurks as a question for all of us, whether we choose to recognize it or not.

One of the first places I remember “how long” was as a child forced into adult spaces. God we’d badger our parents. There is nothing like the adult need to look good to other adults playing out in spaces not designed for children, and superimposed upon a childish sense of impatience. For the child, “how long” gets tied to everything from bathroom visits to timing the eons before being allowed to play outside. And ironically, the answer to “how long” is inexact out of necessity. No parent in their right mind would answer “how long” with an exact answer, because we all know that failure to meet such a self-imposed deadline would be grounds for the other infamous whine of childhood, “But you said…”

Our childhood experiences tend to carry into our adult perspectives. As adults, we often look at the length of time that we have to spend on a task as more of a negative than a positive. We hate wasting time on things we don’t want to do. We want to know “how long” do we have to put up with this. We get enamored of the question, and we think the answer is in being impatient with the answer. We translate the childhood whine into adult irritation, often responding in ways that our mothers certainly did not teach us, yet justified by an unconscious sense that adults shouldn’t have to put up with this—whatever this is.

I suppose the most immediate place that “How Long” intrudes for me is in writing. For those who write for a living, I don’t know how you do it. I don’t write to meet deadlines, and I give myself the space not to write if energy wanes that week. But generally, I start writing on Friday night and by Sunday, something has taken shape that explains a small part of the dis ease universe in which I live. Where “how long” comes into this picture is a little complicated. I have told you just how therapeutic it is for me to write these reflections each week. But they also represent physical regression. I try not to go back and look at what I wrote in March or April, because I see references to walking or driving the Honda or fulfilling some sort of physical task. From the perspective of the wheel chair, those days look a million miles away, and they raise the question of just how long I will be able to write in this way before that goes too. “How long” arrives in unwelcome streams of consciousness, although I try to frame it as best I can.

“How long” intrudes into other spaces for me as well. As you know, I have worked full time since my diagnosis, and for someone who loves his work as I do, the question of “how long” is ever present. I am sure it is present for my colleagues as well, raising some interesting communication issues about how we are going to talk about this. I wasn’t raised this way. My childhood understanding of dis ease was that polite people didn’t talk about it, and the only ones who got away with knowing anything about sick people were children who didn’t know better, and gossips who did. But if work is to work, the questions surrounding “how long” have to be talked about from time to time. I recognize that in spite of the numerous changes I have made in the way I do my work, greater changes are going to probably need to come if this is to be a successful venture for the university and for me. And at some point, the critical mass that points to leaving my position will be more apparent. While I keep doing gut checks, looking for reasons to step away, the reply whispering in my ear is “Not yet. No, not just yet.”

If you equate quantity with quality, then you choose the easier road of a life unexamined. The “how long” question focuses on a future that none of us can really predict, playing on our fears of death and equating length with worth. There is so much more to what makes our lives meaningful than just the temporal mileposts we hit. We are born, we live, we die. How long this takes is specific to each of us, and while a long life might seem to be the goal, it is what we do with the spaces between born and died that really determines our impact on this life. ALS has taken my “we live” space and condensed it, leaving me with the conscious choice of living each day as fully as I can, or dying as quickly as I am able. And this is not just my decision.

A good friend who is handling her dad’s dementia wrote that temporal longevity is really the stringing together of a number of immediacies. She said, “The long term is actually a series–a long series–of immediate needs. I was hoping that (in the case of my Dad) things would level off and we’d be able to stick our thumb in the dis-ease dike for a breather but that really hasn’t happened. I now know better. It is a long marathon and I’m fine with that now. This whole journey–yours…my father’s…mine is a moment-to-moment kind of deal. I never saw that until now…”

See what I mean? If all you see is the “how long”, then our lives as humans equate to nothing but a flyspeck on the billions of years of this world’s existence. But if we focus on the “how well,” then our existence is remarkable for its possibilities. For me, dis ease has been a laser beam illuminating what really matters. Each day is the opportunity to fulfill a meaningful answer to the question, “How can I make this the best day it can possibly be?” It is a question of worth and value, a sharing of humanness that notes the potential each of us carries, in spite of our flaws. The temporal question just compounds basic human fear.

I know that for many of you, given your knowledge of what happens to a person with ALS, discussion of quality of life probably has a temporal irony to it. After all, just how long do you think you can find quality if you can only communicate through eye blinks? Or even worse, just how long do you think you can keep some quality in your life, when your husband, father, brother, sister, wife, lover, son, daughter, friend requires every single bodily function cared for by you and a host of others, and the only thanks you might receive is through some secret language developed to maximize the use of the one or two controllable muscles left? Where is the quality in that?

In December, at our annual Christmas gathering, I told my faculty and staff that one of the things I have learned in this past year is that although my physical muscles are withering, I have found new capacity for growth through the exercise of my care muscles. I wasn’t planning to say “care muscles.” It just popped out, but it really puts a new context to what is important. No matter who or what, I find I care a lot more about how others are going through this life experience. I find that I care a lot more about whether my brothers and sisters find the strength to live meaningfully with joy and sorrow. And I find that I care about how easy it is to fall into the fear mongering of “how long” over the care mongering of “how well.”

This framework is really new for me, and I like the space it creates.

In the end, it isn’t about “how long” at all. “How long” only gives you a temporal framework for your life. The real question is “How well?” Unless of course you are really hungry, with the smells of a delicious stew wafting through the house, causing you to dream the deliciousness of your anticipated meal. I’d give you “how long” for that one.

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.