The following post is part of a series of reflections and interview responses given by successful young adults with varying disabilities who have direct experience with the Connecticut Special Education system. Our interviewer and writer is Katie Feinstein, daughter of Attorney Feinstein, who is also a successful young adult living with disabilities. Katie chronicles individuals respective journeys within the system and beyond, into their adult lives. The Feinstein Education Law Group represented some of these young adults when they were students. Katie asks individuals to discuss their struggles, triumphs and perspectives as they consider their pasts and move forward into futures of hope and evolving independence.
I am a thirty-one year old woman with a primary diagnosis of cerebral palsy, specifically spastic diplegia, living and working independently in the midst of a fairly sizable city. My secondary diagnoses include a processing disability, ADD, depression and generalized anxiety disorder. Utilizing a B.A. in psychology (earned from the University of Saint Joseph in 2009) in combination with a fierce passion for writing and an innate interest in people, I am currently working as a web content writer for a law firm dealing in special education law. Due to my C.P., crutches prove to be my constant companion, with the occasional wheelchair ride thrown in when necessary, but it is rare that I allow my physical limitations to slow me down or keep me from doing what I have to, and or want to, do. They do not prevent me from living on my own, maintaining my own apartment (with occasional help from the close friends and family that bless my life), paying my own bills, working (albeit part-time), and nurturing various friendships and hobbies both at home and within the community. It is not always easy living life with a disability but it does make for interesting material and encourages the use of imagination, which in turn, makes me a better writer and grants me a perspective not many have.
Though I was born with cerebral palsy, and my parents suspected there would likely be complications due to my premature birth and very low birthweight, my first diagnosis did not formally come until several months after my arrival, when people around me noticed that my younger sister was meeting milestones much faster and more age-appropriately than I was. I am nearly four months her senior (she and I are both adopted), and yet, whether it was in sitting up, crawling, walking or any host of other things, she invariably beat me to it. And so began, at roughly fifteen months, my procession of physicals, physical and occupational therapy evaluations, psychological evaluations, gait labs, CAT scans, many rounds of leg casts, a few surgeries, and a battery of other tests I can no longer remember. Later on in my preteen years, I was tested for ADD and a processing disability and began seeing a counselor for depression and anxiety. These tests and procedures all together took place over the span of years, and to a much lesser extent still crop up on occasion in my adult life. Some of them helped, some of them didn’t, and some of them made me feel like a lab rat, but all of them served to provide insight into the workings of my body and mind and allowed a better understanding of how I could adapt to the world around me.
And adapt I did, though I often needed some help to do so. This help came in the form of adaptive equipment, like my forearm crutches, my leg braces, a wider desk and shorter but more supportive chair, a sit-down-to access locker, a wheelchair for longer distances, and an unfortunate but thankfully short-lived foray with a TENS unit, to name a few. More mainstream technology, such as a laptop, erasable pens, and a Smartboard that allowed anything that was written on the specialized whiteboard to be transferred to paper and printed, were also used. These adaptations were mostly utilized in regards to school and the resulting homework, with mobility devices and supports present throughout every area of my life, but as I got older and discovered my love of reading, music and most especially, writing, the laptop and pens became outlets for creativity in my personal and social life as well as academic.
To be completely honest though, the most valuable resource for me has always been, and probably will always be, the people around me. My family, who have always fought for me, encouraged me to do my best and often asked me to exceed my own self-expectations, is filled with advocates and those knowledgeable in the ways of the world, but who taught me it is always important to find that which brings you joy and good humor, to engage in self-betterment and self-reflection, and to be kind to people. They did all the physical things I couldn’t, and, when I was old enough, taught me how to do them myself, or how to obtain assistance if it was needed. As valuable are my friends, who have seen beyond what is presented on the outside to real person lying beneath, while still being accepting of the fact that sometimes my physical and processing capabilities have to be considered. They introduced me to fun, to Star Trek and to the belief that a little whimsy, insanity, and magic are necessary ingredients to cultivating happiness and creativity. My teachers, alternatively, also did more than granting extended time on tests, organizing copies of lesson outlines and lesson plan or notes later in college: they introduced me to learning and the thrill of writing, assuring me that though I could certainly read, I could take it a step further and create books and poems, too. I have been blessed in my life with several superb physical and psychological therapists who have, through the years, stretched out my muscles, talked me through some very hard times, helped me to find coping mechanisms, and have set me on the path of achieving independence with physical and emotional strength. Some of the most important people who have guided me, such as my mother, my grandparents, and my favorite therapist, have since passed on, but I am both eternally grateful for their influence on my life, and am incredibly thankful for those who continue the journey with me.
These adaptations and guidance from those around me did not necessarily mean that I did not experience difficulties within school and out, however. Strangely enough, the physical limitations have not proved to be the most daunting aspects of my disability through time. True, they required the use of a walker and leg braces to get around, and, at least early on, the use of an aide I adored who both carried my backpack and, more importantly, redirected my attention when I acted like most other excitable little people and got distracted. The physical limitations were obviously also the most noticeable among my peers, but thankfully, thanks to some fun “what you should know about disabilities” days, in which they were addressed and questions were allowed to be asked, bullying and isolation were largely things I didn’t have to cope with, at least until I was slightly older, and even then, it was a minimum. Other than that, the occasional fall incurred while having to accommodate for delayed reaction time and an exaggerated startle reflex, and occasionally doing individualized activities during gym class, I was not usually cognizant of the more outward differences between myself and my peers.
Far more apparent to me, especially as I grew older, were my so named “invisible disabilities.” I have always struggled with concentration and spatial awareness since infancy, often going still for long periods of time, staring off into space while my imagination ran wild, or bumping into things because I’d misjudged their distance from myself, or simply couldn’t move my body in such away as to avoid objects. By the same token, Math as a whole has long been the bane of my educational career, merely because I was unable to properly line the numbers up, track changes in equations or visually comprehend graphs, diagrams and geometric shapes and their applications. My processing disability, which went undiagnosed until my late high school to early college years, coupled with my ADD, which was not diagnosed until around sixth grade, meant that most every homework assignment had to be read at least twice for me to understand it’s meaning and broader implications. Essays were often rewritten several times and took a very long time, because despite my love for reading, words, and writing, they were fairly disorganized, did not flow well, or lacked the focus that my own brain was struggling to maintain. I often required extended testing time in a quieter environment in order to focus during exams. My moods, thanks to some traumatic experiences in early childhood and some fairly unstable biochemistry even with medication and therapy, were often unpredictable, going from happy to frantic to surly and maudlin in the span of an afternoon, much to the chagrin of my parents, teachers, and friends. These difficulties have, to some degree, persisted into adulthood, despite using medications such as Ritalin (which I hated because of its extreme effect on my mood as the medication left my system) and later, Adderall (which was exceedingly helpful and was ultimately the medication I continued with throughout my academic career, along with Fluvoxamine for my anxiety and depression).
To be fair though, these difficulties in movement, concentration, anxiety and depression have, since Junior High, changed me, perhaps for the better, despite being far from a “walk in the park.” As my awareness of things beyond my corner of the world grew along with my grade level, my brain, with help from those creative and analytical beings around me, was drawn to developing a diverse vocabulary, delving into far away lands through increasingly more complex reading material, and allowing the discovery of both of my passions; understanding the inner workings of the human mind in order to heal them, and writing fiction while critically thinking about the world. Without these disabilities acting as catalysts, I am not sure where my future would have led or who I would be as a person. It is clear, they do not define me, but they certainly helped shape me. As a result, Junior High school and college are my most fondly remembered academic periods, though they were also the most intimidating because this budding and sometimes frightening understanding of the world meant that I began taking a more active role in it, from participating in the development of my own IEP and 504 plan to include coping mechanisms that worked for me, to beginning to advocate for people with disabilities and mental illnesses as a whole, to understanding just exactly how the “real world” worked, all the while, trying to find my niche.
Learning all of this was often overwhelming, and caused me to branch out my interests. In Junior High, I began to write fantasy from home after school. I discovered the joy of lasting friendships, and entered with them into the world of science fiction, including Star Trek and the Harry Potter fandoms. In college, I began to casually study holistic medicine while earning my psychology degree, an interest which has endured past my college years, leading me to obtain my Reiki level 1 certification with an interest in pursuing further study. Leaving college and then my parents’ house, I took up adaptive Karate, both for the physical exercise and because I quickly began to realize that the bigger services and supports that I had previously taken for granted in school, (physical therapy, psychologists, and appropriate medications) were increasingly difficult to obtain as an adult with her own health insurance. After several years of trying to find affordable physical therapy that focused on maintenance and strengthening instead of rehabilitation, I found one that was willing to assist, and now attend at least once a week with as many trips to a pool or any other large body of water as can be managed. I also began meditating on a regular basis and utilizing guided imagery. These newfound interests as well as more lifelong coping mechanisms have helped to bring some serenity and joy to a world that is sometimes harrowing and far too “real” for this dreamer’s heart.
However this occasional difficulty in navigating the adult world, in maintaining my very body and independence as I age, has necessarily sparked my awareness that the need to educate the general populace about disabilities and mental illness, and to advocate for those affected by these, is still prevalent. All too often, people will mistakenly equate physical disability with a mental deficit or learning disability. I have both first hand experience and anecdotal evidence where people have spoken to the individuals traveling with a disabled person regarding said person rather than directly addressing them, on the assumption that due to their physical difficulties, they were either unable to communicate, or perhaps unable to understand. Friends traveling with such disabled people are mistaken as caregivers, rather than companions. Whereas, alternatively, learning disabilities, mental illness, and “invisible” disabilities are often less readily accepted if there is no obvious physical component to be seen. Proof is demanded for parking spaces or accommodations, leaving such folk to struggle without their needs being met or to advocate for themselves. As the political climate towards those with disabilities changes, working with organizations like the Disability Lifespan Alliance and Connecticut United Cerebral Palsy, has become a necessary “hobby” to advocate for myself and others, to educate those who may not understand, so that someday, such assumptions and unintentional ignorance may be a thing of the past. As humans, it’s become clear to me that our nature is to constantly learn. What we do with this knowledge is entirely up to us.
If I could impart some advice to someone like me, I would say this: find what lights your fire, what makes you who you are. If it’s creating your own world, enjoying fandoms and magic, or learning to understand and fight for people, while seeking balance like me, that’s great. If it’s finding out how things work, chemistry, history, sports, or enjoying nature, that’s fantastic, too. Don’t give up. It is sometimes hard to focus on the things that bring you joy on days when your body hurts or isn’t acting as you feel it should, or when things just don’t seem to make sense, but never stop pursuing that which excites you. Learn to live in the world, and add to it your own unique flavor, staying grateful for what you have, what you can do, instead of dwelling on what you can’t. Speak up and make your voice heard. Be kind to others.These are things I will strive to remember, too, as I write my future books and blogposts, as I continue to advocate, as I further pursue psychology or healing, because in the end, we are all unique musical notes in a sonata we merely haven’t seen in its entirety yet.