Faces to the Word

When I knew him he was twelve years old and in the sixth grade, that awkward and glorious first year of middle school. He loved English class and was less enthusiastic about Mathematics, but diligent about completing his homework. He was a fan of college basketball, football, and track and field. Most afternoons he joined his friends at a local after school teen club where they played sports, checked out girls, and just "hung out". The TV was permanently set to MTV whenever he had any say about the matter. When given the chance he came home with a trombone to play in the middle school band and used his pencils as drums far too often. He was one cool kid.

She was three years old and the definition of independence. She wore only the clothes that she wanted to wear because the battles to try to convince her to wear anything else were far too great. She did everything on her terms and would refuse to cooperate with a direction to then do the exact same thing a minute later as long as no one told her to do so. At the age of three she was bilingual, working with a third language, and could easily switch between the languages based upon the situation and her needs. After being exposed to the book Brown Bear, Brown Bear for a week at school she took it to the reading corner and "read" it word for word from memory, turning the pages at the right times and adding dramatic flair. If she did not want to do something, there was little chance of changing her mind. She was shy around others but also a flirt with her smiles and waves and a chatterbox when she was at play. I lost debates with her frequently.

He is six years old and has the best sense of humor I have ever seen in a child. You have to be very careful what kind of jokes or comments are said around him because he picks them up and understands things that he is far too young to understand. He is a superflirt with the Kindergarten girls, and girls in general and has quite the fan club. He does not hesitate to make his opinion known and has his own opinion and view about almost everything. One of his favorite ways to amuse himself is to test every new adult he meets by trying to see exactly how far he can push them. He loves technology and working with computers. He also loves watching car races, Disney movies, and Pirates of the Carribean. He hates girly movies.

These are just three of the many children I have met and loved that have also happened to have mental retardation. They are not stupid or uncool, and they deserve more respect than to have to face a world where they are bombarded with the word "retarded" being thrown at them as a slang term for things that are uncool or displeasing or hated. They deserve acceptance, respect, dignity, and equality. They are kids who have more in common with their peers than they have differences. How long will it take us as a society to learn this fact?

Sticks and Stones

I know that this spring/summer there was a great deal of debate over the terminology used to refer to individuals with cognitive disabilities or delays due to the movie Tropic Thunder. I stayed out of that debate because I felt that based upon the quality of the movie, those who would pay attention to the debate would never have attended the movie to begin with and vice versa. However, I have noticed since that time that the word "retarded" has become a standard slang phrase amongst not just teenagers in middle and high school but far too many adults as well to refer to anything that they may find senseless, odd, or to their disliking. This horrifies me because this is a word with power. All words have power, but words that have been used to identify people, to segregate and isolate and dehumanize people are especially powerful. The word "retarded" has a long, dark history that includes institutionalizations, forced sterilizations, and eugenics. It is a heavy, weighted, sharp and cutting word and among probably the top powerful and historically weighted words in the English language. So why is it suddenly considered acceptable to take this word and throw it in the face of those for whom mental retardation is a medical reality? To mock it, to ridicule it, to turn it into an insult? Words have the ability to dehumanize, to disrespect, to rip apart people and to take a label that someone already has to bear and turn it into an insult, to ridicule it and make it a joke is beyond dehumanizing. It not only dehumanizes individuals with mental retardation but it dehumanizes those callous enough to believe it is appropriate to utilize the words in this manner. It reveales a depth of ignorance and supposed superiority that is astonishing. It reveals just how far we have not come since the days of eugenics and institutions.
Another powerful word is the word wheelchair. It sounds simple, until it is used in place of any other identifying feature and the person using the wheelchair is referred to as "a wheelchair" or "the wheelchair". This is dehumanizing and demeaning and disrespectful. Just because someone relies upon an alternate mode of ambulation does not mean that their mode of ambulation defines them; they are not "a wheelchair" anymore than someone who walks for ambulation is "sneakers". It turns a human being with thoughts, feelings, emotions, worth and value into nothing more than an object that is worth less and too often worthless. To define an entire life by its limitations instead of its humanity, its successes, its uniqueness is ignorant, is painful, is injustice by definition, and is unethical/immoral. No one wants to be defined by the areas in whic they struggle or by the differences that the world has not yet learned to value; everyone wants to be defined as a unique individual. To have words that may already be a burden become callous jokes or inappropriate summaries of your existence is unacceptable. Sticks and stones may break just bones, but words destroy the soul.

Lessons Learned

I thought that I had a decent awareness and understanding of concepts like accessibility and inclusion, of not just tolerance but acceptance of individuals with disabilities in society as equals especially because of my experiences as a special education teacher and advocate for inclusionary practices in education. Perhaps my awareness and education about the subject was greater than average, but it was still so incomplete. This has become clear to me recently as I have found myself interacting with the world from the position of one requiring a wheelchair for mobility due to a still unexplained loss of muscle strength and change in muscle tone. I have discovered that accessibility is so much more than I would have ever imagined. There are so many subtle issues to being able to access a store or a building that I never considered, far beyond whether there are stairs or a ramp. Things like adequate aisle space, objects cluttering and blocking the aisles, the positioning of so many objects so far out of reach, and certain areas of stores being designed in such a way that it is impossible to access them in a wheelchair. It is also attitudes. I have been blatently stared at while out in public countless times, as if my humanity disappeared the minute I ceased to use my legs as my primary source of mobility. Then there is the constant assumption that because I am using a wheelchair to access the world, I must have surrendered a great portion of my intelligence as well. My heart breaks for how my kids must be treated in public, the stares and comments and the lack of dignity when they are spoken to and how desperately they must long for a way to communicate the message that they are still kids and to get over it. I have to rely upon publc transportation right now, since my vehicle is still hundreds of miles away and I do not think I would be permitted to drive anyway, and this too has been a startling experience. It has been engrained into my being that all people are people first and then they may happen to be people with a disability, but apparently few people in the world recognize this. I have been referred to as "a wheelchair" more times than I can count. I am not a wheelchair anymore than someone who walks is sneakers - my method of mobility does not define me- yet how often this happens to my kids breaks my heart. They are automatically defined not by their unique personality, not by the fact that they are children, but by their diagnoses and disabilities. For convenience, for ignorance, for prejudice, for simple labels they are reduced to that with which they struggle instead of all that is so gloriously right and perfect and beautiful and incredible about them. My first year teaching I heard my assistant refer to my children who were non-ambulatory as "wheelchairs" and gently, but firmly explained that I would not tolerate such language never expecting to hear it again. I am saddened that so much ignorance remains and to know that this is the world my kids are up against. Yet I am all the more proud of them for their spirits, for their determination, and for their families who are unwilling to conform to the definitions provided by the world for their children or themselves. Right now seems like a very difficult time in my life as I am having to fight so hard to regain all that I have lost, but I have also gained so very much. I have gained such incredible insight and awareness of the world faced by my kids and their families that I could have never known without living it myself, and I will treasure the wisdom and appreciation from this journey that has changed my heart forever. If anything this will have made me a more dedicated, passionate, compassionate, aware, and advocate teacher.

Coup

I have not written here in a long time, and that is because I have been busy trying to fight back the coup that my body is staging against me. Apparently it does not appreciate the governmental system of my body, but since this is not a democracy but a monarchy (I am the Queen in charge of this vessel) it is just going to have to deal. Since October 23 I have spent 22 days total inpatient in two different hospitals and countless days undergoing outpatient testing. So far I have received the brilliant diagnoses of malnutrition and failure to thrive, which I believe are a given since I have lost over 25% of my body weight since October 23 and certainly can not intake enough of anything to get the nutrition I need. However, without a cause that is clearly defined on their testing (and dysautonomia does not cooperate like that) the doctors refuse to do anything other than monitor the weight loss and provide some supplements. I am also going to be receiving PT and OT services since the malnutrition triggered rapid, progressive muscle weakness and worsened the ataxia. My two new escorts are my wheelie walker for very short distances (about 100 feet or less) and my wheelchair for anything longer than that. I think they sent over a child sized wheel chair because while the seat is perfect, the leg supports are too short if I put my legs up any higher than down at 90 degrees (which is uncomfortable) even on their longest extension. So my wheels need some adjusting (also, a seatbelt would be helpful to keep me from falling out of the darn thing, especially when other people are driving it). I have not been able to teach since October 22, and I miss my kids beyond what words can describe. I knew that I wanted to teach special education since I was in sixth grade, so for me it is not a job so much as a dream and a purpose. To not be able to do so right now is frustrating and disheartening and painful. I want to be there with my kids, celebrating each victory and encouraging them to go beyond all expectations set for them and being creative until I find a way that works to teach and provide the information as well as allow them to communicate understanding. I detest being stuck at home (literally since I can not get down or back up the stairs), primarily in bed. I would most likely throw my TV out the window if I could do so as I by nature am not a huge TV fan (I happily went all summer without access to a TV) and after two months of this I have far surpassed my tolerance for it. I normally can not go more than a day or so without getting outside, yet I have been outside once since December 12 and that was for the ambulance ride home- stir crazy? I can only tolerate foods that are totally smooth and pureed, which means I never want to see or eat another mashed potato as long as I live once I am better, nor do I want to look at infant rice cereal. I can, however, offer recommendations on stages 1 and 2 infant food which is an odd skill to have. I am working with my home health care nurse to arrange for me to travel to where my family is while I recover, for accessibility reasons (I swear this house is trying to kill me - throw rugs, a bathroom that the walker only fits into sideways, hallways too small for a wheelchair, those stairs), safety reasons (probably not a good idea to leave a somewhat fall prone klutz with a walker home alone all day), and my willingness to ask for help (I live with amazing friends, but I hate asking for help and would rather go without or risk hurting myself than be a bother). So it looks like within the next week I will be home, surounded by my family and constantly having to remind them that medicine has never found nagging to be a cure for anything. :)
Anyway, I have not forgotten this journal but I have been engaged in medical combat with a firmly entrenched resistance force. I do have a CaringBridge journal that I started to help keep my family and friends updated, especially while I was in the hospital but I am continuing it. The address is http://www.caringbridge.org/visit/bethanysummer if you want to check that out in between entries here.
May 2009 bring us all health, safety, joy, providence, and abundant love!

And It All Comes Crashing Down

My life came crashing down around me in grand fashion and I am left to try to pick up the pieces yet again. As a result of genetic predisposition, dysautonomia, and medication interaction I became severely depressed and had considered suicide as a viable option of escape. I spent eleven days inpatient in a psychiatric hospital where I can attest that dogs at the humane society are treated with far greater dignity, respect, and appropriate medical care. I have lost the ability to eat anything of value by mouth (a few bites here and there with a lot of gagging and sometimes vomiting) and still struggle to drink enough but while in the hospital no one helped with that and I lost 14 pounds in 11 days. I have no clue what I have lost since being released. My principal has continued to harass me and try to make my life as difficult as possible even while off of work sick from what appears to be a major flare of the dysautonomia. I miss teaching my kids horribly and desperately want to get my life back. Yet in America it is easier to do just about anything than access outpatient mental health treatment, especially if you dare to have private insurance. I do have an appointment at a University Medical Center on Thursday to start addressing the GI issues and see what can be done about my inability to eat or tolerate food. Due to a lack of intake, I have no energy and no strength and no endurance. I do not allow myself to become overly frustrated often, but I have been dealing with all of this medical stuff for 27 years. I am so tired of it all, so tired of having to search for answers when the doctors offer none or write me off, so tired of being the "medical freak", so tired of the stupid questions/comments asked every time I encounter someone new in the medical field ("why do you take so many medications?", "But you are too young to have so much wrong with you!", "How do you know you have dysautonomia?"), so tired of feeling and being so incredibly different. Most of the time I am thankful for the lessons I have learned and the insight I have gained from my experiences, but sometimes, and especially now, it just feels like an incredible burden that is so hard to carry. I remember last year when one of the students in the special education class next to my preschool class was working on a project and was using a computer program to select items that went with certain emotions for him. He repeatedly selected an image of a wheelchair to go with sadness, even after the teacher checked and rechecked to make sure he understood and was activating the switch on purpose for that image. I totally understand how that sweet boy feels. He is sad at being limited, sad at being different, sad that he is unable to do all of the things the others his age can do. I could understand that in an instant to the depths of my soul. My kids must have days, weeks, times when they are just as frustrated and tired of dealing with all of the limitations and difficulties in their lives. Just because they are children we often forget just how hard it must be for them and that they are acutely aware of not being able to keep up with the children that run around them, that chase out to recess, that speak so easily. They too must become exhausted with medical appointments, doctors, tests, medications only they may not have any way to express it. I remember as a highly verbal child still feeling powerless during all of the medical testing and doctor's appointments - I can not imagine going through that and being unable to even voice my opinion (and I can tell you I most certainly voiced my opinion as a child). This life, to whatever degree you experience it, is never easy and there are times it seems almost impossible. There are times when it feels like it has all come crashing down around you - as a parent, as a child, as an adult. Picking up the pieces is tiring and exhausting and sometimes painful but after a few times you learn that eventually it does start to be less painful, less difficult, less consuming and life slowly returns to you on you terms. But when it all comes crashing down, and crashing down hard, it is a lonely and miserable place to be - and I never did like puzzles very much.

This is inclusion

Yesterday was field day at school, a day that I both love and dread each year with my students. I love it because we get to experience the closest thing to full inclusion that exists for m kids in this county right now. We go out and participate in every single activity that I can possibly modify, adapt, or make accessible alongside the general education population without any distinctions made (no special activities are designated for us, we do not attend at a special time or sit in the back row). We are kids having fun in a swirling mob of other kids. I dread it for a few reasons: 1) the logistics of planning how to adapt activities and to "off road" our wheelchairs up and down giant hills that are never accessible, 2) the logistics of mobile "crash carts" that must be assembled and taken everywhere without attracting attention from the other kids, 3) stupid adults who don't "get it". I must say that my kids had so much fun yesterday and we were able to adapt probably 70-75% of the activities for them to participate in. Favorites included t-ball, the 50 yard dash, the sack race, and the basketball toss. Apparently I throw like a girl (um, I would be worried if I didn't). A few run-ins with clueless or even prejudiced people made my protective emper flare momentarily, but then we moved on and had a blast. For example, a really cool semi-truck came that had a bowling lane in the trailer. I could see the parts to quickly place a ramp over the steps and make it accessible but the two men running it said there was no way to make it so our wheelchairs could go into the trailer, but we were welcome to carry the kids up and inside. HUH?!? Like that is safe, or legal, or not flat-out prejudiced. After my mini-education on discrimination the guys still played (or maybe were) stupid so we just let our sweet girl who can walk cut in front of the 50 other kdis in line and have a turn. We were willing to wait in line if they were willing to make it accessible, but not otherwise. Our other run-in was with a parent volunteers at t-ball who kept directing children to go around us in line and when I pointed out that we were in line replied "well, I just saw the strollers and the babies and thought you were only watching.". WHAT?!? I quickly pointed out that they were wheelchairs, that my kids are in kindergarten, and that they don't generally like being called babies. I said this very politely, but was told not to be snipey. Whatever. We spoke loudest with the incredible hits we made and the laughter that echoed as each child ran the bases. Give us a fair chance and you will be amazed by the things we can do. Label us babies and pass us by, and you will never know the potential we hold. :) Plenty of other people made up for those two issues - a bunch of fathers working the giant parachute jumped in and helped our kids be able to run in and out from underneath the parachute and mae sure we all participated and then asked very insightful questions about our program. At the sack race, kindergarten kids who know my kids from inclusion were cheering on my kids as we raced. ;) A little girl helped my kids at the basketball toss, and at bowling countless kids cheered on my little one who got the chance to bowl. All in all it was a great day. Everyone had a great time, but most importantly they had a great time alongside their peers without any great production made about it. This is inclusion- a little adaptation, a lot of creativity, many tender hearted children, and a focus on ability rather than disability. We make it seem so much more complicated than it needs to be. And instead of the fearful unknown that it is t many teachers, it is beautiful, it is natural, it is children being children before adults muddle it up and complicate it.

She left her handprints on my soul

She was mine for less than 6 months, but the mark she left upon my heart will last a lifetime. When you are attending college to become a special education teacher, it is a common refrain from professors and advisers and supervising teachers that you must learn to separate you heart from your job in order to avoid "burn out". Perhaps this is sage advice, but I can not fathom trying to educate a child without forming a relationship of trust with them and in turn, I can not imagine building up a relationship of trust and understanding without loving the child. The children in my class are "my kids" and I willingly take the risk of loving them, of letting them into my heart, because I simply do not know any other way to be a teacher or a human being. She was "my kid" during my first year of teaching, a rough year for any teacher and an especially challenging year for me as I was indoctrinated using the "sink or swim" method. Her arrival was timed with Christmas, and so she was my present for the new year- a beautiful little girl with a multitude of challenges, so medically fragile and willfully strong. For 5 months I celebrated her steps, I learned the meaning of each sound that she made, I puzzled over ways to prevent her from pulling out her life-sustaining tubes (trach and g-tube), I explored the world with her and her friends. Then with little notice, just weeks after her fifth birthday, she was gone. I had played the odds of teaching open-hearted and lost. At first coping was focused around her family- preparing a yearbook signed by her classmates (fingerprints that I labeled) and teachers/therapists, printing all of the photoraphs we had taken of her, gathering her artwork, colecting donations to help the family pay for travel expenses, and sending out cards to them that came in from classmates. Then coping became about making it through the rest of the year in the classroom where she was noticably missing. Finally it became about finding the peace to know that loving her was worth the pain of letting go, and that the risks are worth the rewards. Yet I could not settle on such an inward transformation not somehow being outward; this little life has forever changed mine and I needed (need) that to be evident. So in a delicate line-drawing upon my back I had a tattoo plaed of a child's cupped hands opening to release a butterfly. It is the closure I needed, the permanent reminder I hold dear of how one life short on years can have great impact, and the hope (faith) I have for the future that love is always worth the risks.