The Disability Advantage

Two weeks ago, I attended a seminar hosted by a local professional group for women in development. The speaker challenged those of us in the room to consider our personal reputation, or brand. Specifically, she spoke about the importance of building, protecting and repairing our reputation as individuals and also as representatives of the non-profit organizations that employ us.

I have attended other workshops and seminars where participants were encouraged to define, curate and protect their personal brand. Usually when I sit in these sessions my mind starts to wander. I start to question how much of my “brand” is influenced by my passions and beliefs, as opposed to the skills I have developed in response to living with a disability. Many of the qualities which strengthen my personal “brand” have been honed by living with a disability.

For example, I am a creative problem solver. When faced with an obstacle or barrier, I am able to quickly scan any available resources and devise a plan of action. This comes from decades of needing to locate wheelchair accessible entrances and paths, hundreds of nights spent in inaccessible hotel rooms or friend’s houses, and eighteen years of living as a wheelchair user without any roommates.

No curb cut at the corner? I start searching for the closest driveway or backtrack to find a way off the sidewalk. My wheelchair doesn’t fit through the hotel room’s bathroom door? I measure the desk chair (they’re usually on wheels) to see if it will fit. Sure, it’s an extra transfer but at least I will be able to pee without having to go downstairs to the accessible public restroom or fitness center in my pajamas every morning. I mean, I have done that when necessary. When you gotta go, you gotta go.

My disability has also given me good executive functioning skills. These are the skills required to plan, focus, remember and multi-task. When you live with a mobility disability, you are constantly using executive functioning skills – at least I am. I plot out my fluid intake for the entire day before I even get up in the morning. How much I consume is based on when I have Personal Assistant (PA) staff scheduled to help me use the bathroom, and what other tasks I need them to complete. I select my clothes with several factors in mind – the weather, where I will be going, who will be working, and how much time is available to use the bathroom. Of course, this assumes I will have staff to help me use a bathroom which suits my needs. If I do not have a PA or if I cannot use an available bathroom, then the plan will change.

Pee math – the ratio of fluid intake over length of time – is one of the most crucial planning tasks I perform every day, but definitely not the only one. I organize my life based on the PA staff scheduled to work for me. I prefer to have certain PAs perform specific tasks, and some PAs have stronger skill sets in differing areas. Therese, who is wonderful with shopping and laundry, is unable to help me shower. Margaret hates clutter and likes to clean. When she works, I know my linen closet will look very organized by the end of her shift even if I haven’t asked her to do it. Some PAs make excellent travel companions, and there are some I would never ask to accompany me on a trip.

Of course I bring these executive functioning skills with me to my paid employment where they become part of my personal “brand.” I am viewed as a leader by my peers because of my ability to build consensus, juggle multiple tasks and think creatively. Still, I wonder – would I have developed these abilities if they were not required due to life with a disability? Would I seek new ways to approach problems or would I go with the status quo? Would I anticipate and devise contingency plans for every possibility if my disability had not made this a part of everyday life?

My disability, the one thing strangers often assume must be a negative factor in my life, has provided wonderful opportunities to gain crucial skills which make me successful in navigating a world not designed for my needs. These advantages have served me well in my professional and volunteer roles, and are an integral part of my identity and personal “brand.” It has been easy to transfer my life experiences into professional opportunities to further the mission of my employer. I am a stronger employee because of the lessons learned from disability.

What unique life experiences have shaped your personal “brand?” How have you taken life lessons and used them to further your career? I’d love to hear your thoughts in the comments!

Happy Father’s Day Sam!

Once again, it is Father’s Day in the United States and some other countries. I suspect I will see many posts honoring fathers on social media today. I originally wrote this post in honor of my father, Sebastian or “Sam” as he is known to everyone, as part of my 30 Days of Thanks posts. It has been a stressful week, so I am taking the easy way out and sharing it again as most of my readers were not here for the original 30 Days series.

Happy Father’s Day to all the fathers out there, and to all who serve as father figures to others. My thoughts and prayers are with my friends and family who are facing their first Father’s Day without their father.

Thirty Days of Thanks – Sam

When I decided to do the 30 Days of Thanks challenge, I knew my mother and father would have to be mentioned. I decided to write about them separately because they each deserve their own day in this month of gratitude. People who have good relationships with their parents often credit them for shaping their own success. I never appreciated just how amazing my own parents were until I left home and realized others were not blessed with the same family love and acceptance I have known.

My father, Sam as he is known to everyone, is one of the most influential people in my life. He is outgoing, friendly, and quick with a story if given an audience. He was the manager of the grocery store in my little hometown, Bainbridge, for more than 30 years. As such, he was the first employer of many – myself included. It seems almost everyone in town knows Sam. To this day, when we go out in town together someone always says, “Hi Sam!” He will have conversations with them all even if he is in a rush.

My brother-in-law’s family used to hold an annual bluegrass festival. For several years, my father ran the concession stand. My friends and I were eager to earn money so we would spend the weekend at the festival serving hot dogs and hamburgers. We were the recipients of his pearls of wisdom as he flipped burgers and sang along to the music. Several of those sentences continue to guide me today.

“The customer is always right – even when they’re wrong.”

“I don’t care if you have a calculator or a cash register – you have to be able to count money and make change in your head.”

“People are more likely to do what needs to be done if you tell them why.”

“It doesn’t matter what job you do or what you learn in school. The most important skill you can possess is the ability to get along with people. If you can do that, you can do anything.”

If I am faced with a problem or dilemma, I ask myself what Dad would do. Unfortunately when I talk to him about things he often says, “I can’t tell you what to do – you have to figure that out on your own.” But the conversation often helps me uncover new ideas or angles I may not have considered. He usually has a story to tell about the matter at hand.

Dad is generous with his time and talents. I learned the importance of becoming engaged in my community by watching him. Bainbridge is home to an annual canoe regatta and for many years he coordinated and managed the chicken barbecue. Dad volunteered for the church, the Knights of Columbus, the Chamber of Commerce, and the Rotary Club. In his 70’s he began helping serve “the old folks” at the senior meals; many were younger than him. A few years ago when he was hospitalized I learned he had adopted a child in South America through a church charity and wanted to make sure I would continue to support him if “something happens to me.” He purchased a subscription to the New York State Conservationist  magazine for my niece when she moved to North Carolina for a teaching job so she could help her students understand New York was more than New York City.

Dad and I in front of “our tree.”

My parents were older when I came into the family. Dad claims I was planned but I’m not sure my mother was planning for daughter number six. Last year my parents celebrated their 60th wedding anniversary. Dad and I posed for a photo in front of “our tree” – the pine we planted together when I was five. As we stood there, he leaned over my shoulder and said, “I’m so glad we had you.” I choked up when I turned to kiss his cheek, grateful for the man who for so many years has served as my moral compass and a source of love. His belief in me – in all of us – and his admiration are gifts beyond measure. I honor him by doing my best in the hope I continue to make him proud.

Why I am an Ally

I am an ally because of:

• Alex – who is kind and loyal
• David – who is always there to offer support and encouragement, and unconditional love (except for that one night in college when my friend and I called him to help us after we discovered $1.50 pitcher night at a local dive bar and drank more than we should have – but we forgave him.)
• George – a forever friend who is teaching us about determination and resilience as he continues to recuperate from a serious health crisis
• Kelly – who courageously lives her life on her own terms
• Bill – who taught me the importance of saying thank you today to the people who have influenced your life, before time runs out
• Andy – who changes tears of sadness to tears of laughter with what most would consider inappropriate jokes
• Tony – who made me start singing again after a two year silence
• Al – a teacher to many, in and out of his classroom
• Kevin – my confidant and playmate at many childhood family gatherings
• Tom – who fearlessly chased his dream across country and is living large, proving wrong all those who doubted (I never doubted!)
• Dominick – who has helped me become a stronger advocate through his actions and example
• Becky – who encourages me with her creativity and optimism
• Howard – who answered the questions of a naive college undergraduate who was struggling to be a good ally (I hope I’m doing better!)
• Andrew – who brings #deliciouslydisabled to people each and every day
• Joe – who manages to surprise me with Facebook comments just when I need a smile
• Sue – who sang harmony with me for staff birthday sing-alongs at Riverview (which is not along the river, and has no views)
• Amanda – who inspires me with her success at reaching personal milestones
• Sam – who teaches me to be a stronger writer by sharing his experiences with honesty and vulnerability
• Liz – who always makes meetings more fun with her wit and dry sense of humor

I am an ally because everyone deserves to live their lives free from fear, with dignity and respect.

I am an ally because I know what it feels like to be discriminated due to the way you were born, a part you cannot change, the part which makes you uniquely who you are, the part others cannot accept even though you embrace it as your identity.

I am an ally because I was taught to love others as I have been loved, not to hate.

Love is love.

And the world needs more love.

Mission Accomplished!

For the past five months, I have posted rehabilitation updates on my Facebook feed as I reached rehabilitation milestones. I have been overwhelmed by the support and encouragement from hundreds of friends whenever I shared a progress report. Yesterday, I shared an important update – one I was not confident about achieving back in January when my former personal assistant dropped me and I fractured my femur. 

Rehab update: I have been discharged from outpatient physical therapy (PT)! And my sitting left knee flexion is 90 degrees! Without pain! 

Yes, I have been discharged from outpatient PT! The range of motion in my left leg has improved dramatically from January. Although pain is still a frequent companion, it is less debilitating than it has been in months. My tolerance for physical activity has increased. I have lost twelve pounds since my discharge from the rehabilitation hospital in February.

Do I sound like I’m bragging? I AM!

On January 11, while sobbing on my bedroom floor waiting for the ambulance, I knew I had sustained a life changing injury. When you live with a progressive neuromuscular disease, you know these types of events can strip you of independent mobility and function. It has happened to me in the past, and I was fearful of how this incident would impact my daily life.

I knew recovery would be a long, painful process. I was not wrong. There have been countless times when sudden pain caused instant tears and furious outbursts of expletives. Rehabilitation has been tough, and certainly not pretty. I have been cranky, moody, short-tempered and brusque with those who love me. I have snapped at family members who offered assistance, and pushed away well-meaning friends because I didn’t have the energy to be social.

But I am not a quitter, particularly when an orthopedic surgeon who doesn’t know me well tells me I will never do something again. Those who DO know me understand the best way to get me to do something is to tell me you doubt my ability to get it done.

And I don’t know how to fail with humility and grace. If I set my mind to do something, I stubbornly persist until I have accomplished the goal.

Back in January, I could not predict how long it would take me to get to this point or if I would ever get to this point. Yet, somehow I have made significant progress and my therapists feel I can be set free to continue rehabilitation without their assistance.

I WILL continue my rehabilitation program even though I have been discharged from PT. I know it is working. I see it in my movements and feel it in my leg strength. I have worked too hard to stop now. The scary truth is this injury may have finally created what physical therapists have tried to create since I first started PT as a child back in 1978 – a Denise who voluntarily engages in and enjoys routine exercise.

Current status: Relaxing with a gin and tonic while shopping online for a cute bathing suit in a smaller size.😉

 

 

On the Road Again

One of the biggest hurdles in my recovery from my broken femur has been driving. I drive an adapted minivan, a sleek silver vehicle I have named Clyde. Clyde has a ramp which allows me to drive my wheelchair in and park it where the middle row of seats would normally be. My driver’s seat is mounted on a transfer seat base which allows it to swivel. I slide out of my wheelchair into the driver’s seat, rotate the seat to the front, slide forward, and drive. At least, that is how the process has worked for the past fourteen years until my orthopedic surgeon restricted me from putting weight on my left leg after surgery.

Since February I have worked in physical therapy to regain strength and function with the goal of being able to independently transfer in and out of my driver’s seat. My apartment is located in an area not served by our local public transportation. The disabled paratransit service does not come to my apartment as I live too far from a fixed bus route.

If I cannot independently drive, I have three options. I can ride as a passenger in my own van while someone else drives. I do this when I have to, but I am a terrible back seat driver in my own vehicle. Another option is to have someone help me get in my van at my starting location and someone else help me get out of my van at my final destination. Or, I can have someone accompany me every time I need to drive somewhere.

I have used each of these methods to remain employed and engaged in my community, and I am appreciative of the friends and family who continue to assist me. But when you are used to the having the ability to get up and go whenever you want, scheduling your activities around someone else is limiting. Like most people who have been driving for decades, I am used to the freedom of movement which comes with the privilege of being a licensed driver who owns a vehicle.

In early April, I reached an important rehabilitation milestone when I successfully transferred in and out of my driver’s seat. I required assistance, but I did it! After a few practice sessions, I began to drive around my neighborhood. Within two weeks, I was driving to and from my office once or twice each week. My knee protested from time to time, and realistically I was unable to drive for more than 45 minutes at a time before the discomfort became too much of a distraction. But I was driving!

Behind the wheel for the first time in April.

This past Tuesday I reached an important milestone when, for the first time since January, I transferred into my driver’s seat and put on my seatbelt completely independently! It took me a good five minutes, and there were a few choice words flying out of my mouth from time to time, but I did it!

I still require assistance to get out of my driver’s seat and get back into my wheelchair, so I am not completely independent with driving. I don’t know if I will reach that status given the changes in my leg. This may be as far as I get with my rehabilitation when it comes to driving. I plan to make the move to driving from my wheelchair using hand controls within a year, so I just have to find a way to function until then.

For now, I know if I had to get somewhere in an emergency, I could get in my van and go. I might not be able to get out when I get there, but that’s a problem for another day.

My experience has given me a new perspective on the transportation difficulties people with disabilities face on a daily basis, particularly those who live in suburban or rural areas. I have not been as strong of an advocate for transportation as I could be. I plan to change that going forward. The push for community living can only be successful if people have access to their community and accessible transportation is a crucial component of independence.

In the days immediately following my discharge from the rehabilitation hospital while I was relearning how to function at home, I wondered if I would ever be able to take a road trip and spend the night anywhere other than my apartment. I enjoy traveling and the prospect of not being able to explore the world was frightening and depressing.

This is Memorial Day Weekend in the United States, the unofficial start of summer. I have spent every Memorial Day Weekend in my hometown except the year I was an exchange student and the year I was in the hospital after my gallbladder surgery. I was determined to find a way to make it home this weekend. Once I transferred into my driver’s seat on Tuesday I knew it would happen.

Yesterday I drove my van down the highway in the bright sunshine. I rolled down the window, cranked the music and sang the songs from my “move it” playlist with the wind blowing on my face. As I rolled to a stop at the end of the exit for Bainbridge, I couldn’t help smiling in triumph.

Sure, there is more work to do in my journey towards independence. But this weekend, I am content to be on the road again.

Conservation of Energy

When I was younger, I thought I would grow up to be a music therapist and structured my high school course work to match my projected career path. I took only the minimum required science courses – earth science, biology and chemistry – and not physics. I stayed away from physics because I could never remember all the formulas and equations. Density, momentum, power, work and energy – my brain hated this math dressed up as science. Even now, the only physics concept I relate to is the law of conservation of energy. This law states energy cannot be created nor destroyed, merely transformed from one form to another.

I relate to the law of conservation of energy because I live my life juggling energy. I talked about this before in this post when I wrote about Christine Miserandino’s spoon theory and how it applies to my life. I have “good energy” days and “bad energy” days. Unfortunately, I cannot predict when either will occur. Sometimes I will have multiple meetings scheduled for work, but I wake up and discover it is a bad energy day. When this happens, I know I must conserve what little energy I have so I can accomplish the most and still have energy to get home, go to the bathroom and get to bed. Sometimes I will have nothing planned, but I wake up and feel full of energy. When this happens, I try to accomplish as much as possible without overdoing it and accidentally causing the next day to be a bad energy day. Since my femur fracture in January the energy required to complete daily tasks has increased, forcing me to juggle enjoyable pursuits such as writing, with required activities, such as employment, with creativity.

Lately, my energy level has been more depleted because I am once again struggling to maintain adequate Personal Assistant (PA) staffing. I’ve written before about the importance of good PA staff and it turned out to be one of my most popular posts. This tells me I am not alone in my struggle. If you haven’t read that post about how my life is different when personal needs are met, please take a moment to go read it now. I’ll wait. Really – go read it.

In physics, objects have potential energy. I remember it as the stored energy of an object in relation to another object. I know, that definition is too simplistic, but remember I didn’t do physics. A coiled spring has potential energy, as does the string of a bow which has been pulled back by an archer. Potential energy is influenced by force. In my case, my body has potential energy and my PA’s impact the level of potential energy each day through the force of their work.

Physicists describe work as the force required to move an object. There is a formula to calculate work but as I’ve already explained, I am bad with formulas. What I do know is work transfers energy from one object to another. This I understand, because when I have adequate PA staffing, their work creates energy in my body. When my PA shows up on time in the morning to help me get out of bed, go to the bathroom, shower and get dressed, I have more energy. When my PA comes as scheduled to help prepare my meals and perform basic housekeeping, I have more energy to pursue those activities which matter to me (employment, writing, crochet, and more) because I have conserved the energy I would have otherwise spent on other tasks. Likewise, when a PA is late for a shift or calls out at the last minute, I am forced to waste expend energy on locating a replacement so my basic needs are met. And when the PA who is scheduled to assist me at the therapeutic pool with my outpatient physical therapy has car trouble or difficulty with childcare, I am unable to engage in exercise which helps build strength crucial to my ongoing recuperation.

Other outside forces impact my energy level. I have more energy when I am warm than when I am cold. The physicists might try to apply some law to this (thermodynamics?). To me, it’s as simple as cold causes pain and pain makes movement more difficult. I also rely on mechanical and electrical energy frequently – my power wheelchair, my electric bed, the transfer seat base in my van.

My life is a constant struggle for energy. Energy is a precious commodity which must be conserved and managed in order for me to engage in my community. When the force and work required to maintain my energy is not consistent, I go into survival mode. I stop doing the activities which bring me joy so I can preserve the energy required to get me through basic daily tasks. Over time, this drain on my energy creates stress on my mental and physical health.

Suffice it to say – I’m still recruiting new staff. Maybe I need to change the job title to “Energy Conservation Technician” instead of “Personal Assistant” to more accurately reflect the true value of the work.

The Benefit of Being Present

Sometimes my boss asks me to attend events on her behalf when she is already booked or otherwise unavailable. I am always wiling to network with new groups and I enjoy learning, so when she asked me to go to a recent annual conference for a statewide association, I agreed. The particular session she highlighted sounded interesting and was pertinent to my job.

Early last Friday, I settled at a table in the hotel conference room with coffee and yogurt about ten minutes before the session. Others soon joined me and we exchanged the usual introductory chit chat. By the time the session started, the room was about three-quarters full of people doing exactly the same.

The speaker was excellent. His talk featured many “real-world” examples and included simple tips we could bring back to our jobs and start immediately. I am always grateful when speakers provide useful ideas which don’t require a huge budget or time to implement.

My seat at the edge of the room afforded me a clear view of most of the audience as well as the presenter. From my location, I could almost see the audience from the point of view of the speaker. What I saw disheartened me.

I expected to see alert faces, but instead I saw the tops of heads bowed down as the majority of people used their cell phones in their laps. One woman at the table next to me spent the entire session (45 minutes) emailing, texting or writing on her phone. A man at a table on the other side of the room was on Facebook for long stretches of time. I could tell because he was seated in front of a mirror and his phone was reflected over his shoulder in the image behind him.

Now, let me be clear. This was NOT a boring speaker. He was engaging, clearly an expert in his subject matter, and easy to understand. He was doing everything right.

The audience was not.

About half-way through the session, I realized he knew he had lost most of the audience. He began to single out those of us who were paying attention, maintaining eye contact with the faces he could see. I began to nod and smile frequently in an attempt to give him encouraging feedback. As a public speaker, I know how difficult it is to be in front of a group and sense none of the audience is “with you.” He continued on, but frustration was evident in his voice when someone’s cell phone rang at high volume towards the end of his talk. The culprit? Mr. Facebooker, who guiltily raced from the room as he answered the call.

These devices we rely on are wonderful. They connect us to friends and family around the world. In an instant, we are able to reach others during a time of need. We take photos and share them with elderly relatives who cannot visit in person. We can check our work email and our personal email, update social media, and order lunch all in the span of five minutes if we want.

But when we spend all our time looking down at our screens, we miss what is happening around us in the present. The woman who spent the entire conference session on her phone didn’t see the examples on the projector and didn’t hear the joke about the nurse. I know she didn’t hear it because she was the only person at her table who didn’t laugh and clap after the joke.

I’m not saying I have not been guilty of using my phone in what some might consider inappropriate settings such as a conference presentation or dinner with friends. Because I use my phone to help me manage the Personal Assistants I employ, there are times I need to respond to one of my employees instantly about their work shift. However, I make every effort to limit those interruptions and put my phone away so I can be present and attentive to whatever is happening around me. I can always check social media later when I have time to actually be social.

Yes, I know – it’s a novel concept, being social on social media. You should try it. Stop using “like” and start acting with intention. I did it. You can too.

There are many distractions in the world which make social connections difficult. Discretionary technology shouldn’t be one of them. Take the time to disengage from your device. You might be surprised to discover what you can connect with when you disconnect.

My Go-To Tunes: Summer Songs

The weather in upstate New York is lovely this week. We have had several bright, sunny days and the temperatures are warmer. The tulips are colorful and each morning the smell of lilacs embraces me as I walk outside. Summer is coming and I already know what my song for summer 2016 will be.

I heard Justin Timberlake’s new song “Can’t Stop the Feeling” for the first time last Friday afternoon. Rarely do I purchase a song after the first listen, and I’ve never purchased anything by Justin, but this song screams, “Dee Song!” If you haven’t heard it yet, you should give it a listen – even if you’re not a Justin fan. Just be prepared to start bopping and grooving in your car, at your desk, or wherever you may be.

Trust me, this will be THE song of the summer. My only fear is I will grow sick of it before July. I don’t think that will happen. If it does, I guess I will just have to pick another summer song.

Happy Birthday Mary Frances!

Today is National Teacher’s Day. My life has been enriched by many teachers through the years. I would like to thank them all for helping to shape me into the woman I am. But I would especially like to express gratitude to a new friend – a teacher who taught me important lessons of perseverance and strength this year when I was facing new challenges.

I met Mary Frances shortly after my arrival at Sunnyview Rehabilitation Hospital on January 27. I was sprawled on my bed, waiting for the next doctor to assess me, counting down the hours until I could take more pain medicine. The nurse was attempting to make my broken leg more comfortable by rearranging the pillows while giving me information about the unit. She looked up as a woman was wheeled into the room saying, “And here’s your roommate, Mary Frances.”

Hello. How are you? Welcome to rehab.

The sonorous voice modulated in pitch and prosody, the syllables elongated – a technique I used to teach my clients when I worked as a speech-language pathologist. Mary Frances sat regally in her institutional chrome wheelchair, feet firmly planted on the foot pedals. Her slightly askew smile lit her face and the twinkle in her eye told me we were definitely going to cause a ruckus together.

My years of employment in a variety of healthcare facilities gave me multiple opportunities to observe the social interactions between patients and their roommates. The right roommate can make or break  your rehabilitation experience. Negative roommates or those who complain nonstop can make recovery more taxing for the people on the other side of the curtain.

Mary Frances was the best roommate I could hope for. She was optimistic, intelligent, determined, and talkative. We bonded quickly as we shared our respective stories. Mary Frances was recuperating from a stroke which had affected both her fine and gross motor skills as well as her speech and language. Like me, she was learning to do everyday tasks a new way.

The two of us connected over the silliest rehab moments – things which were incredibly meaningful to us but perhaps not to an outsider. She was seated on the other side of the curtain the first time my occupational therapist and I attempted to use a slide board to transfer me onto a bedside commode. I can only imagine what we sounded like as we struggled to find the right positions and hand holds. When my session was over, mission successfully accomplished, I saw that same gleam in her eye as she congratulated me.

You peed on the potty like a big girl! 

Each night, we watched Jeopardy! together. Mary Frances didn’t mind me blurting out the answers to questions. A former teacher, she did well on the literature and history questions. She also beat me on most of the pop culture questions, even with her speech delay.

Mary Frances was determined to do her best every day. She challenged herself in her rehabilitation, often working on hand exercises during down time in our room. One afternoon I returned from the therapy gym to find her making faces at herself in a small hand-held mirror. She attempted to excuse herself for what she assumed must look like silly behavior. I laughed at her, and asked to see her speech therapy homework. Thus began our daily routine of extra speech and language assistance. We spoke to Mary France’s speech-language pathologist who agreed extra practice would be wonderful, as long as it reinforced what they were working on in therapy sessions.

Mary Frances wasn’t my client and I knew it was unethical for me to act as her therapist. However, having the opportunity to use my clinical knowledge to help her provided a reminder that I was more than just a patient. At night when we practiced conversation repair, word finding techniques or facial exercises, I was able to escape from my own pain and injury for a brief time. I felt better because I was helping a friend who was making improvements each day.

Patients at Sunnyview are welcome to move independently about the facility as long as they have been cleared by therapy and nursing. Once cleared, you are given a green wrist band to indicate your freedom of movement. Not knowing this rule, I had been wandering the halls for two days before receiving my green tag. Mary Frances received her green tag a couple days later. We would go down to the cafeteria together for real coffee (Starbucks, not the kind they sent to our rooms on the morning trays). If she was too tired to wheel herself down the carpeted hallway, I sat closely alongside her so she could grab my handlebar, giving her a tow with my power wheelchair. Staff laughed at us before they realized they probably shouldn’t encourage this behavior. We ignored their warnings. Although we worked diligently, we both knew how to be non-compliant at times.

Mary Frances was self-conscious about her oral weakness and took steps to eat without drooling her food and beverage down her clothes. A few days before her discharge, we sat in our room eating roasted peanuts. Mary Frances concentrated all her energy on using her weaker hand to pick up the individual nuts and put them in her mouth. I asked Mary Frances if I could write about her and our rehabilitation adventures on my blog. She stilled her hand, swallowed her mouthful, and thoughtfully gave me verbal consent. I thanked her, then made a comment about how well she was doing eating the nuts without drooling.

Survivors adapt. Other people drool. Put that in your blog!

Survivors adapt. Two simple words with a meaning much more complicated and nuanced.

Thank you Mary Frances for helping me adapt to my new normal. Your encouragement and optimistic support made my rehab journey fun, something I never considered as a possibility. I am grateful for your friendship and so happy we have kept in touch. You continue to inspire me with your progress and improvement.

Today is Mary Frances’ birthday. She is celebrating with family, something she was not certain would be possible while we were together at Sunnyview. Happy birthday Mary Frances – may your day be full of love and laughter.

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.