Redefining Disability Challenge – Question 5

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the fifth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. Here is this week’s question:

What are some significant moments/events in your life that connect to disability?

I have had many opportunities in my life due to my disability. Not just perks like accessible parking or good concert seating, although I’ll admit those are nice.

I was a poster child for my local Muscular Dystrophy Association (MDA) years before we were called “goodwill ambassadors.” I have mixed feelings towards this organization which uses children and pity to raise money. I will explain these at a later time, but for now I will simply say I had many opportunities as a child because of the MDA. Serving as a poster child meant I was regularly invited to attend events such as the Ringling Bros. and Barnum & Bailey Circus or the Ice Capades (do they still exist?). These events were treats my family would not have been able to consistently afford. At the age of eight, I attended my first week at MDA Summer Camp. Camp, a luxury my parents would not have been able to provide without the MDA, exposed me to my first peer network of other children living with neuromuscular disease. I grew from shared experiences and had my first taste of disability pride over the next eight summers. 

My years as a poster child also gave me a skill set I have come to rely on. I first appeared on camera at age seven. I learned at a young age I am comfortable in front of an audience. I am not a nervous interview subject. I can talk about my disability and many other topics with ease. I learned how to “work a room” long before I learned how to put on make up. I know I would not be a confident public speaker without this early exposure and experience.

The summer after my first year of college, my disability qualified me to participate in a summer employment program for disadvantaged youth. I spent six weeks working as a teacher’s aide in a special education summer school program. This opportunity confirmed my chosen field of study (speech-language pathology) and offered me real world lessons which helped me apply the theory I was learning in school.

I started college the year after the Americans with Disabilities Act (ADA) was signed into law. Like most campuses, my school was making changes to policy and physical structures in an effort to be more welcoming to students with disabilities. I was a charter member of a new group on campus, the Disabled Students Organization. Each year, we were invited to meet with the college President to discuss the access issues we felt were most important to address. This provided me with valuable experience advocating for others with various disabilities in addition to myself.

The aspect of my adult life connected to disability which has had the most impact has been my involvement with the Ms. Wheelchair America (MWA) program. This organization, whose mission is to provide opportunities for women of achievement who use wheelchairs to educate and advocate for people with disabilities, changed my life.  Unlike traditional beauty pageants, participants are judged on their ability to be an articulate spokesperson for people with disabilities. In addition to being a state titleholder, I served in a variety of positions on the national Board of Directors for MWA for ten years and coordinated the New York program for twelve years. MWA, a volunteer-lead nonprofit, is an organization I believe in because I have seen so many women grow as a result of their participation.

When I became a state titleholder, representing New York in 2001, I could not predict the influence this program would have on my life. The following is a brief list of what happened due to my involvement in MWA:

  • In September 2001, I was invited to sing on a local television station. The man who would be my boyfriend for the next four years saw me on TV and called me. That’s how we met. Trust me, it was not as ‘stalker-ish’ as it sounds, and it made for a great story whenever anyone asked us how we started dating.
  • I was invited to sing my original song, My Life’s Too Good To Be A Country Song, in Washington DC at the 2003 Olender Foundation Awards, held in the Ronald Reagan Building and International Trade Center. I burst out in inappropriate and amateurish laughter during rehearsal because I was overwhelmed hearing the band playing MY song!
  • I traveled across the country to many places I might not have otherwise visited – Arkansas, Iowa, Utah, South Dakota, California, Virginia, Michigan, and Nebraska to name a few.
  • I gained a sisterhood of accomplished women who, like me, just happen to use wheelchairs for their daily community mobility. These friendships have challenged the way I think about disability and opened my eyes to possibilities I never considered.
  • I further developed my leadership and event planning skills. Coordinating a week-long national pageant for up to fifty or sixty guests who all use wheelchairs is an undertaking not for the faint of heart.

I don’t mention these examples to brag. I use them to illustrate how sometimes circumstances which outsiders feel would be the absolute worst thing in the world (a disability or wheelchair use) can provide meaningful opportunities one may not consider. As an incoming college freshman I never envisioned being invited to the President’s office. Entering my first national MWA pageant as a state titleholder, I never thought I would attend each national pageant for the next twelve years.

Yes, disability is difficult. People can be cruel and unfeeling. But my life has been enriched in many ways because of this marvelous electrical chariot attached to my butt. I am grateful for the gifts my disability has brought me.

Redefining Disability Challenge Question 3, Part 2

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the third question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. I am a licensed professional who worked for nearly ten years in geriatric rehabilitation, so I approached this particular question from both the patient perspective and from my professional perspective. Last week I wrote as a patient; today I share from my experiences as a clinician.

What have your experiences with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?

I never thought I would have a job or career in a medical field. When I was younger, I thought I would become a music teacher. I realized I was wrong during my first semester in college and spent the next year trying on various majors for size. When I sat in the first class of “Survey of the Nature of Communication Disorders” with Dr. Gary Jones, I knew instantly I was meant to be a speech-language pathologist (SLP). I was fascinated by words, language and human communication. Working as a SLP meant I could help people, which has always been important and rewarding to me, and be challenged by topics I find intriguing.

I was taught and mentored by some of the finest clinicians and professionals. My professors viewed me as competent, and stood by me when I encountered discrimination during one of my clinical practicum experiences. In classes, I learned about communication disabilities while I was coming to terms with my new identity as a wheelchair user. I was no longer able to walk after my third year of college. There I was, trying to develop skills to help my clients adjust to disability when I had yet to tackle my own feelings related to impairment and a changing body. Sr. Charleen Bloom, a wonderful professor who taught the seminar devoted to counseling skills for SLPs, knew I was holding back and tried to get me to open up to the class but I kept those emotions under lock and key. My studies exposed me to disabilities other than the motor impairments I knew so well, and were my entree into disability pride.

I assumed I would work in a school setting, as is the case for the majority of SLPs in the United States. My first day of student teaching in a public school cured me of that misconception. I worried for a year, uncertain what I would do with my degree, knowing I was not meant to work in a school with children. Then in the summer of 1995 I started my practicum with Joe at a local nursing home and I knew what I was meant to do. I loved the medical aspect of speech therapy! I enjoyed the diagnostic challenges, and felt purpose in my work. I was comfortable in health care settings, not bothered by disability, impairment or death. I spent the first ten years of my professional life working as a per diem SLP in nursing homes and rehabilitation centers. The company I worked for held contracts with several local facilities which gave me the opportunity to learn and work in a variety of settings.

As a professional who just happened to have a disability, I was able to connect with my clients in a way others could not. Often, I was the first peer mentor they encountered as they adjusted to disability. I was able to offer real world advice and experiences to prepare them for the transition home. The social workers did their best, but many families (even those not on my caseload) came to me to ask about services and options for community living.

My personal experiences with health care professionals who did not treat me with autonomy and respect meant I worked diligently to ensure my clients had input into their treatment plans as much as possible. I asked clients and/or family members about their goals, and did my best to design therapy sessions to meet them. I never took clients out of the beauty shop for therapy, and when the weather was nice I brought clients outside. Communication doesn’t happen in isolation, so I took advantage of everyday situations whenever I could.

At least once a week I was accused by someone – either a visitor, new resident or new staff – of being a nursing home resident. I wore a name tag clearly identifying my role, and was professionally dressed, yet for nearly ten years I had to justify my place as a staff member, not a resident. People assumed the wheelchair meant I lived in the institutions. One particularly bad day stands out in my memory. I had visited three facilities over the course of the day, which was stormy and wet. I was finally done with my last evaluation at 6:30 PM. Bundled up against the cold, I pushed my way through the very heavy (not automated) glass doors only to have a staff member come running up behind me and drag me back into the facility. Despite my protests, she was convinced I was a resident trying to “escape.” This was not an isolated event. I would enter staff break rooms to get coffee only to be told by staff who did not even bother to look up at me that residents were not permitted in the break room. I wish I could say I handled these interactions with grace and kindness. Unfortunately, my sarcasm often escaped before I remembered to keep my mouth shut.

I wasn’t the only wheelchair using professional who worked in these facilities. There was a Hospice nurse who also used a wheelchair. For months I wondered why the unit nurses always tried to hand me the Hospice charts. Then one day I was wheeling down the hallway and saw another woman, with dark  hair and glasses, wheeling towards me. We both started to laugh as we approached each other. “You must be Hospice,” I said. “And you must be Speech,” she replied. We decided it had to be the hair and glasses – why else would anyone confuse us?! From that day on, I had an ally and fellow advocate in the workplace. I learned so much from her example.

I left my job as a SLP for many reasons. But I have maintained my professional certification and my license. I worked hard for those credentials, and it is reassuring to know I have marketable skills should I ever need to seek employment. I can never really turn off the “speechie” part of my brain. I analyze accents and speech patterns, observe chewing and swallowing of those around me, and apply compensatory communication strategies in my own life on a daily basis. My disability has helped me focus on communication as the goal of treatment interactions, rather than ‘normal’ speech and language (whatever normal is). I am grateful to have personal experiences to guide me.

Redefining Disability Challenge – Question 3

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the third question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. I am a licensed professional who worked for nearly ten years in geriatric rehabilitation, so I am going to approach this particular question from both the patient perspective and from my professional perspective. Today I write from my experiences as patient.

What have your experiences with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?

Medical treatment and physical therapy have been part of my life for as long as I can remember. My earliest memories involve hospitals and doctors. Most aren’t pleasant. They provide insight as to why I am skeptical of any medical professional who does not treat me as an equal member of my care team, an expert on my body, capable of self-direction.

My parents took me to my first neurologist when I was three years old. I remember him asking me to sit on the floor of the examination room. He wanted to watch me get up. I knew I couldn’t get off the floor independently and refused to cooperate. Despite his repeated requests, I was adamant. Eventually he put me on the floor. I saw my mother crying, watching as I stubbornly refused to participate in the doctor’s attempt to evaluate me. Why didn’t he believe me when I said I couldn’t do it? On the way home, she promised we would never go back to that doctor.

Later that year, I had a muscle biopsy and spinal tap to confirm my diagnosis. There were other tests, but they aren’t etched in my mind. I remember being under bright lights in surgery, hearing the nurse say, “I think she’s waking up!” A black mask was placed over my face and I drifted off again. Two days later, the nurses forcibly took away my stuffed animal, Puppy, as they wheeled me down the hall for my spinal tap. I did not cooperate with the nurses, who wanted me on my right side. I argued to flip to my left. Once I was prepped on my left, I then argued to move back to my right. I cried for Puppy, not understanding why I couldn’t have him with me. I don’t remember the restraints, just screaming and crying until I was reunited with Puppy and my mom.

We found a medical home in the neurology department at a regional medical center. Every six months for the next seventeen years, my parents and I would drive the two hours each direction for a day of medical appointments. The three of us would wait in the examination rooms, my mom working on a crochet project while my dad and I played with the reflex hammers, blood pressure cuffs and tuning forks. Initially I saw just the neurologist and physical therapist, but eventually added the orthopedist. My neurologist was fun, attentive and respectful. When he picked me up to put me on the table, I counted the freckles on top of his balding head.

Even as a child, I was never excluded from the discussions between my doctors and my parents. My questions were answered with patience at a level appropriate to my cognitive ability and maturity. The clinic was housed in a teaching hospital, and if interns asked my parents about having me removed from the room, they would explain this was my appointment, my body, and I had a right to be there. I learned about my disability and was able to explain it to other children who often asked, “Why do you walk funny?”

I received physical therapy at home until I started school, where it continued twice a week for the next twelve years. I had wonderful therapists who did their best to make the sessions fun. But it’s not fun to endure stretches and engage in activities which sap all of your energy and leave you too fatigued to play during recess. I used the time in therapy to ask questions about my muscles and my body, and develop a tolerance for pain.

I had two more surgeries before the age of twenty one. When I was ten, I spent eight weeks with both legs in casts after surgery meant to straighten my feet. Ten years later I had surgery to fuse my left ankle. This surgery left me in a cast for twelve weeks which caused rapid muscle atrophy. Despite four months of intensive daily physical therapy (all while finishing my final undergraduate semester and student teaching) I was unable regain the ability to walk.

In 1997 I noticed a sharp, unexpected decline in my physical ability. Imagine electrodes placed along your nerves, repeatedly zapping them to measure how fast the impulse travels down your limbs. This is the joy known as nerve conduction testing. It is usually followed by electromyography (EMG) which measures the electrical activity in muscles. A very thin needle is inserted into your muscle and you contract that specific muscle as hard as you can around the needle. I had both legs and an arm tested. After nearly three hours of torture, I was told I had been misdiagnosed. I was not expecting the level of pain, the news, or the callousness with which the doctor dismissed my questions.

I went to a physiatrist to discuss a physical therapy regime and was asked if I meditated, or found myself clinically depressed. He tried to tell me positive thinking would increase my energy level and improve my outlook. When I asked how to deal with the daily fatigue, he told me to stop working and refused to listen when I explained why this was not an option financially. I was fresh out of graduate school with loans and a new career. I had not spent five years earning the right to call myself a speech-language pathologist to sit at home and not use the degree!

I am a big fan of positive thinking. I do it well. I am an incurable optimist. I know several people who live with depression. I am one of the least clinically depressed people I know. When I shared this story with friends back then, most people laughed because they knew if positive thinking could have helped, I would have been “cured” long ago. Sadly, this dismissal of symptoms and the encouragement to just give up work happens to people with disabilities all the time.

When I finally started seeing the neurologist affiliated with the local Muscular Dystrophy clinic later that year, I found an ally. He acknowledged my authority as expert in my body. He accepted me as an equal on my care team. He ended every visit by asking me, “What else can I do for you today?” He listened without judgement and did not threaten or bully me when I was “noncompliant.”

I will not remain with a health care provider who does not view me as competent. My primary care doctor treats me as a complete person and recommends preventive screenings. When I went to a new OB/GYN last year, she assumed I have a sexual history, like every other 41 year old patient, instead of viewing me as asexual just because of my disability. I know from my peers and from my professional work in public health not all people with disabilities receive this level of care. Too often we are only seen as our disease, our impairment, our difference. When I had an abdominal ultrasound two years ago, the technician asked me at least fifteen questions about my disability even though it had no connection to the reason for the visit.

I am a healthy person. I eat well. I don’t drink to excess. I don’t smoke. I don’t have high blood pressure. I am vocal about my decisions related to medical matters. I wrote my first advanced directives in 1998, not because I fear death but because I wanted my family to know my wishes. Until complications from my gallbladder surgery in 2013, I had not been hospitalized in twenty three years. Thankfully, those I love and trusted stood by my bedside and advocated for me while I was unable to. Doctors and nurses only saw an empty wheelchair, but family and friends were my voice and ensured my wishes were followed. I am alive today because we had those difficult conversations prior to a crisis.

My life-long experiences have made me comfortable in medical settings. I know the culture of western medicine. I can navigate healthcare and hospitals with ease thanks to this exposure. Next week I will discuss how these skills translated into my professional experiences.

Redefining Disability Question 2

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the second question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later.

Question: If you have a medical diagnosis, do you see yourself as having a disability? Why or why not? If you don’t have one, how do you view the concept of disability or the people in your life who have them?

There are many ways to view disability. The concept of disability is really a social construct, which means the definition is influenced by cultural preconceptions. I live in a culture which for years has viewed disability through a medical model. The medical model of disability views disability as a health condition (usually a deficit or abnormality) which is dealt with by medical professionals. The “problem” of disability is one to be “fixed” or “cured.” A person is often described in terms of what they cannot do. I have read this, or something similar to this, in my medical records: This 41 year old wheelchair bound woman is unable to independently perform activities of daily living, and relies on assistance from others to function. She is unable to weight bear without assistance but can perform a stand pivot transfer with min-mod assist. She relies on bi-pap to maintain respiratory function during sleep.

Did you notice all of those problems or things I cannot do? Often, viewing disability through a medical model results in pity for the person “afflicted with” or “suffering from” an impairment. If a person is not “normal” it is assumed their quality of life must be less than those without disability. People with disabilities are encouraged to “overcome” and must adjust to “mainstream” society because the disability is the person’s problem. Disability is negative, and a person’s experience is often described using the words or phrases I have put in parentheses.

The social model of disability contrasts to this view. The social model does not deny an impairment and the impact it has on a person. But disability is viewed as the result of interactions between a person living with impairments and the barriers they encounter in the social environment. For example, my lack of ability to climb steps does not disable me. Rather, the lack of a functioning wheelchair lift and staff who give me attitude when I ask for the key for the lift prevent me from interacting on equal footing with my community. In this model, it is society which needs to change and accommodate people living with impairment instead of the individual needing to accommodate to a society which does not grant them equal access. I don’t need to be able to climb steps – the business owner who wants my money must make their business accessible to me.

The social model of disability promotes the view that people with disabilities have a right to expect full participation. This view is the basis for the United Nations Convention on the Rights of Persons with Disabilities, which has been adopted by many countries. Sadly, the United States has yet to ratify this treaty, which is inspired by United States law. I’ll save my editorial about this for another post.

You may not recognize the importance of the shift to a social model of disability, but I know many who live with disability who understand. If we are viewed with pity or as objects of charity instead of individuals with rights who are able to make decisions for our own lives, able to give informed consent and be active members of society, we will never be treated as equals. I have succeeded in my life because I was expected and encouraged to succeed. I was raised by parents who viewed me as capable and worthy of the same opportunities as my able-bodied peers. How different life would have been if my mother had not opposed the school district when they wanted to send me to a self-contained classroom for students with disabilities just because of my physical impairment. The district meant well, but had limited experience with children with my diagnosis. Consumer Directed Personal Assistance, the program I use for my home care, is based on this model where the Consumer (senior or person with a disability) is viewed as capable of self-directing their own care rather than a medical professional dictating care at home.

I cannot walk. I cannot lift heavy objects. I cannot physically get myself into a seated position when I am in bed. I cannot lift my arms up over my head when I am in my wheelchair. But I am not my disability. Most times I am not disabled.

Webster’s Dictionary defines disabled as “incapacitated; unable to work.” I am not a disabled woman. My woman-hood works just fine. I am not a disabled person. I am a sister, a friend, an aunt, a professional, a speech-language pathologist, a crocheter, a baker, a volunteer, a leader, a Rotarian and more. Thanks to technology and the Personal Assistants I employ, I live an independent, self-directed life. I am grateful to live in a country with laws such as the Americans with Disabilities Act which grant me equality and access. Without electricity, technology, physical assistance and civil rights, I would be very disabled indeed.

Yes, I have experienced moments when I feel disabled by my environment. I do occasionally describe myself as disabled when the actions or attitudes of others have prevented me from full equality. But I use person first language when describing myself and others. I am a woman who uses a wheelchair. I am a person with a disability. On the rare instances when I call myself disabled, it is because society has failed to include me or make accommodations for my needs. I no longer apologize for the accommodations I require, something I used to do. Instead, I expect they will be there and prepare in case they aren’t.

Redefining Disability Question 1

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the first question posed in the Redefining Disability Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up in later questions. This first question is really four questions and I will answer all components of the challenge.

Q – What is your experience with disability? Do you have disabilities? Do you have loved ones who live with disabilities? Do you work with people who have disabilities?

Disability has always been a part of my life. I was diagnosed at the age of three with a form of muscular dystrophy. Actually, I was misdiagnosed the first time around. For the first half of my life, I thought I had Charcot-Marie-Tooth (CMT) disease. CMT, also known as peroneal muscular atrophy, is a disorder which affects the peripheral nerves. These nerves are outside the brain and spinal cord. They relay nerve signals to the muscles and sensory organs in the limbs.

When I was twenty-two I was correctly diagnosed as having a form of Spinal Muscular Atrophy (SMA). SMA is a motor neuron disease and affects the part of the nervous system responsible for controlling voluntary muscle movement. There are different types of SMA. Doctors tell me I have some symptoms of Type 2 but my progression more closely resembles Type 3. Medical professionals have offered genetic testing but at this point, testing will not make a difference in my daily life so I have decided not to pursue any further investigation into my diagnosis.

I was able to walk until I was twenty years old. In May 1994 I had surgery to fuse my left ankle so I would not have to live with chronic pain. The surgery left me in a cast for the next three months. Despite four additional months of intensive physical therapy, I was not able to regain the strength to walk again. I knew there would come a time when I would require a wheelchair for all of my daily mobility. I was not prepared for it to happen during my senior year of college. I dealt with it as I usually deal with unpleasant declines in my physical ability – by ignoring it and pushing away those friends who encouraged me to attend to my emotional and mental health. I’m glad they stuck with me and were forgiving.

I began using a power wheelchair in 2002. This change made a huge difference in my ability to engage with the world around me because I no longer spent all of my energy propelling my chair and battling inclines. I began to use personal assistance at home in 2007. I manage my own care using Consumer Directed Personal Assistance (CDPA). Instead of being dependent on a homecare or nursing agency to control my life, CDPA allows me to recruit, train, supervise and manage the staff I choose. This self-directed model of care allows me to live as independently as possible, in the community where I belong.

I have many friends and some family members who live with a variety of disabilities. As my family members age, they are facing some of the challenges of adjusting to reduced mobility or the need to alter their daily routines. This has brought about some meaningful and eye-opening conversations about what it means to be independent when one relies on others for assistance.

I am not typical when one looks at disability statistics in the United States in an important aspect. I have been employed full time continuously since November 1996. According to the American Community Survey, a US Census Bureau Survey, only 20.9 percent of non-institutionalized persons of working age (21-64 years) with a disability in the United States were employed full time in 2012, the most recent year for which numbers are available. Compare that number to the 56.4 percent of non-disabled persons of working age who are employed full time. In other words, nearly 80 percent or four out of every five persons with disabilities between the age of 21-64 are NOT employed full time. The numbers in some states are even more stark – like West Virginia where only 15.3 percent of working age persons with disabilities report full time employment lasting for a year. The percentage in my home state of New York is 20.1. You can see the numbers for yourself at the Disability Statistics website created by the Employment and Disability Institute at Cornell University. The reasons for this gap are many, and I am hopeful future questions will permit me to address these.

All of my full time employment has been related to disability in some way. I am a licensed speech-language pathologist and worked in geriatric rehabilitation for the first ten years of my career. I then worked in a public health program tasked with improving health and wellness for persons with disabilities and creating a more inclusive public health infrastructure. I am now employed by a disability related nonprofit organization. My job is to educate, communicate and advocate for CDPA as an alternative to the traditional medical model of homecare. I encounter a variety of disabilities in my daily professional life.

My personal and professional life experiences with disability make me a stronger advocate. My exposure has provided me with empathy towards others of all abilities. The peer support I have gained over the years has been beneficial to my success navigating challenges and obstacles. I also revel in knowing I belong to the only minority group anyone can join at any time – and if you live long enough chances are you will join “my group” as incidence of disability increases with age. I can never be Asian. I can never be Black. I am not a lesbian. But anyone can end up disabled, temporarily or permanently. When I advocate, I am not seeking access for just me but access for all.