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Otherwise Healthy

This post is shared as part of Blogging Against Disablism Day 2016. To learn more about this day and read other posts, visit the link.

My friend Lynda wrote a book entitled Otherwise Healthy after her diagnosis of breast cancer. The book is a resource and guide for those facing a health crisis. Although it is geared towards cancer, the chapters can apply to anyone who finds themselves living through chronic illness or disease, endless doctor visits, tests and treatments.

Lynda came up with the title after reading one of her medical reports which said (I’m paraphrasing), “This otherwise healthy woman comes to me after being diagnosed with breast cancer.” When I read this story in the book introduction, it struck me that I have never seen those words written about myself. I have never heard a doctor say I am “otherwise healthy.”

A part of me (the part that understands the medical model of disability which views disability as a deficit which must be cured) can understand why medical professionals do not consider me a healthy woman. I have lived with a progressive neuromuscular disease all of my life. I have used a wheelchair for 100% of my community mobility since 1994. I require the aid of Personal Assistants (PAs) to complete activities of daily living such as bathing, dressing, or using the toilet. Without assistance from my PAs, I would be unable to live independently and would require institutional care.

One of the reasons doctors may not view me as “otherwise healthy” is because I am an outlier when it comes to health and disability. According to the United States Centers for Disease Control and Prevention, disability is associated with health disparities. I took a look at the data for my home state (New York) and found I am not the average when it comes to health and disability. If you consider metrics of health such as blood pressure, cholesterol, weight and lifestyle choices, I am a very healthy woman compared to other disabled adults in New York. My blood pressure and cholesterol are within recommended ranges, unlike the 40 % of disabled adults in New York who report high blood pressure and the 43 % who have high cholesterol. I have lost almost ten pounds this year, bringing me back to a healthy weight, unlike 40% of disabled adults in New York who are obese. For the first time in almost twenty years I am exercising almost every day, something only 13% of my disabled peers claim. I have never smoked, unlike 30% of disabled adults in New York who smoke regularly. While I do enjoy wine I drink alcohol in moderation, unlike 15% of disabled adults in New York who report binge drinking (this is less than the 19% of nondisabled New Yorkers). I do not use any other drugs and do not take any prescription medications. Yes, I am a forty-two year old disabled woman who does not take any prescription medications. Whenever I see new doctors, they are always amazed by this. More importantly, I consider myself to be in good health, unlike 43% of disabled New Yorkers who consider their health to be fair or poor.

So if I consider myself to be in good health, why is it difficult for medical professionals to view me as “otherwise healthy?” I think it is because the doctors, who are still mostly nondisabled men, have difficulty seeing anything but my shiny red wheelchair. They do not view me as a complete person, a common complaint of many of my friends with various disabilities. Doctors see the disability first and think this is the one factor that must influence my health most significantly. They see the disabled woman – weak and contracted muscles, needing assistance, not curable, not fixable – instead of a woman with a full-time job, volunteer obligations and hobbies. Thus, somehow they jump to the conclusion my health must be poor because I have been living with disability my entire life.

When medical professionals wrongly assume I am unhealthy just because I am disabled, they often make other false assumptions about me. I have had doctors and nurses look at me with shock when they discover I have been sexually active. I know some of my family members read my blog and may not want to think about this – but medical professionals should not assume someone is celibate just because they have a disability. Several doctors looked at me askance when I asked about birth control options. Let’s not even talk about the many times I tried to raise the topic of having a tubal ligation, only to have multiple doctors flat out refuse to discuss it as an option.

If doctors viewed their disabled patients as having the potential for good health, the statistics on health and disability might change. If medical professionals looked at their disabled patients as complete people, not just a disease or disability, they would start treating the entire person instead of just the disease or disability. When I was hospitalized due to complications after my gallbladder surgery three years ago, doctors and nurses treated me differently after my sisters encouraged them to stop looking at my wheelchair and start seeing me. I am fortunate to have had advocates to speak on my behalf. I worry about those who do not have such support systems.

One way to help medical professionals view disabled patients as complete people is to introduce the social model of disability in medical training. The social model, which does not view disability as a medical condition or defect in need of a cure, seeks to change society to better meet the needs of the disabled. The social model recognizes my mobility impairment will not go away, does not need to go away for me to be a complete person. Rather, society needs to adapt to accommodate my needs so I can participate fully in my community. I do not know how to incorporate this model into western medical training which is built around helping doctors learn how to “fix patients.” Perhaps I’ll explore that next year for Blogging Against Disablism.

Until then, I hope someday my doctors will view me as “otherwise healthy.” That is how I view myself – and it is how I deserve to be seen.

Redefining Disability Challenge – Question 38

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

How would you like to see the medical community change in the future?

Because I have lived with disability all my life, I have been engaged in the medical community as a patient or recipient of care for as long as I can remember. One of my earliest memories is from the time I spent in the hospital when I was three years old. I have also been a professional in the medical community as a speech-language pathologist (SLP). I have helped train medical professionals in my role as SLP and as a patient advocate and community volunteer. I have served as a presenter at local colleges, speaking to physical and occupational therapy students about my personal experiences. I was part of the cultural competency training team at a prior job, conducting trainings to public health professionals and medical providers throughout my state (New York).

I understand the culture of western medicine. I can easily navigate hospitals, doctor visits, rehabilitation facilities, and other medical situations because I have experience in many settings. I have worked with, and been a patient of, several talented, kind and knowledgeable professionals. I am grateful for their expertise and dedication to my well-being.

But, in general, there is a negative perception of disability in western medicine and in our society. It is due to our cultural recognition of disability as a Bad Thing – “capital B, capital T” as the brilliant, late Stella Young described it. Rather than being perceived as something which just happens in the natural course of life, disability is often seen as a fate worse than death. And many people, medical professionals included, equate disability with poor quality of life.

I have heard each of these sentences repeatedly over time:

I’d rather die than have to live like you – dependent on other people for everything.

If I had to use a wheelchair all the time, I’d kill myself.

I’d abort my fetus if I learned it had a disability.

If I have to live like that, just pull the plug and let me go.

The people who say these things may not equate disability with diminished quality of life. Most likely, they fear a loss of independence and the need to depend on another for basic survival. Yet, I suspect many of them would not describe my quality of life as “poor” even though I use a wheelchair and rely on Personal Assistants to meet my needs.

I am used to having conversations about disability and quality of life. I have written before about how my life does not accurately reflect the reality of life for the majority of people with disabilities here in the United States – here, here and here in case you missed those posts. If you like pictures and graphic representation of data, you can look at this infographic about disability produced by the United States Centers for Disease Control and Prevention.

I volunteer to speak to students, particularly medical students, because I want them to stop looking at me (and other future patients who happen to have disabilities) with pity. I want them to stop calling me “the wheelchair” when they describe me in the waiting room, and start using my name. I want them to hear the language which has been used to describe me (“wheelchair bound,” “deformed,” “suffering”) and recognize how difficult it is for a young person to develop a healthy self-image when all she hears from medical professionals is what is “wrong” with her instead of good things. If I ever end up in a hospital again, in a coma and unable to communicate, I want medical staff to listen to my family and friends when they advocate for my care as I have instructed them. I want the doctors responsible for my care not to be surprised when my sister tells them I have a masters degree and a license in speech-language pathology, work full time, manage my home care staff and 49 hours of care per week, travel, write and volunteer for community organizations.

People with disabilities need to tell their own stories in their own words and voices so the public hears and reads authentic disability stories, not the disability stories told by the non-disabled. This is particularly crucial because too many disability stories told by the non-disabled are based on the perception of disability as a deficit. My neurologist may be able to explain the biology of my neurological disease to his medical students, but he cannot tell them the story of my life as I can. He can describe the functional limitations caused by deteriorating muscles, but he cannot describe my experiences living day-to-day with changing abilities.

More than anything, I want to be treated as a complete person, worthy of quality care and respect from my providers. I want to tell my own story. Just like everyone else.

Redefining Disability Challenge – Question 4

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the fourth 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:

Do you think that it’s more important to emphasize medical treatment, life skills, community integration, or a combination of these things?

I think all of these things are important, and not just for people with disabilities. I rely on modern medicine to keep me healthy, and to provide the technology and adaptive equipment I need to maintain my independence. But without the skills I have acquired and the experience of lifelong integration, I would not be a successful professional and advocate.

I have only known life in a “mainstream” or fully integrated environment. I did not attend a special school, and was never in a self-contained classroom. Until I started attending a summer camp sponsored by the Muscular Dystrophy Association, I did not know of any other person living with a neurological impairment besides violinist Itzhak Perlman.

I have said many times, and will most likely continue to say, how blessed I am to have been born into the family I call mine. My parents made no exception for my disability, and expected me to perform chores. I set the table, washed the dishes and learned to cook and sew just like my other sisters. My first job, at the age of fifteen, was as a dressmaker’s assistant for a local seamstress. I participated in school activities with my peers – choir, orchestra, concert band, marching band, student council and yearbook.

Because I was always fully integrated in my community, at an early age I learned how to adapt and adjust to daily situations in a world not always designed for my abilities. As a result, I am an excellent problem-solver. Dr. Mark Ylvisaker, one of my incredible professors in college, used me as an example of a person with well-developed executive functioning skills. These are the skills which help us plan, organize, focus attention, juggle competing priorities and remember instructions.

I use these skills unconsciously. I can illustrate how this impacts my daily life by describing what happens when I walk, or roll, down the sidewalk. As I move, I am constantly scanning the ground ahead for potential obstacles, seeking the most level path. I continually make minor adjustments to my trunk and hip muscles so I maintain an upright posture as my chair flexes over uneven sidewalks or tree roots. I do my very best to avoid running over toes while I weave in and out of pedestrians who are slow, avoiding the walkers who just stop for no reason at all in the middle of a sidewalk (WHY?!), or the oncoming pedestrians who don’t see me and cut into my path thinking there is an opening they can use themselves to overtake a slow walker. Some day I’ll invent a word for the shock they exhibit when they realize I am there.

What do you do when you walk down the street? My best friend says she automatically walks to the wheelchair curb cuts while crossing the street even if I am not with her because she is so conditioned to look for them. Community integration changes everyone, not just those of us with visible disabilities.

While community integration has been valuable to me (and many others), I cannot discount the technology and medical advances which have improved my quality of life. I rely on my customized wheelchair and its elevating seat base to independently transfer onto the toilet. My fully electric hospital bed means I do not require assistance during the night for bed mobility. The Bi-Pap machine I wear at night compensates for my weak respiratory muscles which cannot maintain adequate oxygen levels during sleep. I am alive because of the technology used to revive me after a near death experience in 2013.

In the disability community, some talk of a debate – cure vs. care. There is no cure or treatment for my disease. There are many research studies and trials involving mice and gene therapy. I am not waiting for a cure. But I know people with other neurological diseases who have improved quality of life due to medical treatments. I am happy for them, without longing for a cure for myself. Disability, while not the most important aspect of who I am, is definitely a defining characteristic. I wouldn’t mind halting the progression of my neuromuscular deterioration, however I’m not holding my breath waiting for a magic pill to take disability out of my everyday life.

 

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.