What Happened to the Redefining Disability Challenge?

If you are a regular reader here at DeeScribes (and thank you if you are!) you know for several months I was posting my responses to the Redefining Disability Blog Challenge on Wednesdays. If you are new and want to see some of these posts, I have them listed in order on a special page you can find here.

I stopped writing these challenge posts when I broke my femur in January. I decided to take a break because I needed to focus on my rehabilitation. And frankly, the next question in the post requires more research and time than I was willing to or able to invest while recuperating.

I do plan to continue with the challenge because I think answering the questions is useful for me as an advocate and writer. The challenges have forced me to consider how I view my identity as disabled, what that means, and why it has taken me almost 42 years to embrace the label with pride. The response from readers has been encouraging and eye-opening. Disability is a part of who I am. I rarely consider how my reality is different from the norm, because it is just what I have to do to get through this amazing thing called life. I never set out to write a disability blog, but I have to write about disability occasionally because it is such an important part of who I am. The challenge questions allow me to write about disability with intention, which is easier than answering a general question like, “Tell me about your disability.”

So, next Wednesday I will resume the challenge with an important question about disability and the media. I hope you will continue to read and comment on these posts. I enjoy the dialogue these challenges spark and know the questions will be fun to explore.

Redefining Disability Challenge – Question 11

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

Free post day! Write about anything on your mind today. Any topic that the series does not cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

As part of my paid employment, I frequently staff a table and provide outreach and education at a variety of community events, health fairs and senior expos. This is a busy time of year for me and I have been working at least two events each week since the end of March.

Friday afternoon a colleague loaded the back of my van with my outreach materials for the weekend. Sunday morning I drove to a local health and services fair for adults and seniors. By the time I got there, all the accessible parking spaces were taken. This often happens at these events and I am used to finding a creative parking space so I can safely deploy the ramp on the side of my van.

I parked at the end of the very last row. I exited my vehicle, popped the rear hatch and prepared to heft the outreach suitcase out of my van. That’s when I realized the suitcase was backwards.

I am only able to grab the suitcase if the handle of the case is facing me when I sit outside the door. I didn’t supervise the person who put the case in my van and never checked to make sure the case was positioned so I could get it out of my van.

This certainly wasn’t the first time I was alone and needed assistance. I have lived with disability all my life, and frequently find myself alone, physically unable to perform a task. When this happens, I usually do the following:

  1. Take a deep breath and sigh. I HATE it when this happens! Why does it always happen when I don’t have time for this?!
  2. Breathe again.
  3. Look around me for anything I can use creatively to help me get out of this situation. If something is out of reach, can I fish for it using a reacher, a stick or an umbrella? If something is too heavy, can I use something as a lever or a tool to help with the hefting? There is a reason my best friend and I call ourselves “female MacGuyvers.” I can get myself out of almost anything.
  4. Send a silent prayer out to the universe, something along the lines of, “I could really use an angel right about now!”

Without fail, as soon as I ask for help – it arrives! (Note to self….consider making #4 first on your list next time.)

Sunday morning, help arrived wearing a dark blue coat, glasses and a 10,000 watt smile. We locked eyes as she walked up the driveway towards the entrance of the community center. I called out a greeting and asked if she would be willing to help lift my suitcase out of my van. Paulette, I learned her name as she set the case on the ground, was eager to help and insisted on wheeling the suitcase up to the building. Once we were inside, she proceeded to assist as I set up my display materials, making sure the tablecloth was centered and the brochures were all facing forward.

Paulette returned  several times during the event to check on me. The first time she offered to get my coffee. At noon she offered to get me some fruit or cookies. Two hours later, she returned to make sure I didn’t need additional assistance packing the suitcase.

“Will you need me to help you load that in your car?”

I declined her offer. I had given away most of my goodies, so the case was much lighter than it had been in the morning. I zipped it up and set it on the ground, turning to thank her again for all of her help throughout the day.

“Do you need help getting that out to your car?”

I assured her I was all set, and thanked her again. I pulled up the handle, tilting the suitcase back on its wheels.

“Are you certain you won’t have any trouble?”

I stopped, giving her a wide smile and tilting my head. “Would it make you feel better if I said yes?”

She grinned back at me, a twinkle in her eye. “Yes, it would be a blessing. I know you can probably do it, but I’m honored that you would let me do this for you.”

I handed over the suitcase, reminding myself although I hate asking for help, allowing others to help me sometimes is the right course of action.

Redefining Disability Challenge – Question 8

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

Is your family life affected by disability? In what ways?

I was born with my disability, so of course it has impacted my entire family. When I first thought about answering this question, I wondered what my family members would say. What is their impression of how our family life is affected by my disability? What have they learned? How have they changed over time?

I come from a large Italian-American family, a cultural background where family is more than parents and siblings. Cousins, aunts, uncles, nieces and nephews – we’re all family. I also believe friends are family you make for yourself. I am not the only member of my family (birth family or created family) who lives with disability. Down Syndrome, epilepsy, diabetes, lupus, depression, and other mental and physical disabilities – they are all present.

If you are a regular reader of this blog, you know I have five older sisters, four of whom are still living. For this week’s challenge, I asked each of them to write a paragraph or two about having a sister with a disability, and how it has influenced their view of the world. Here is what they had to say. I kept their words, even though some of them cause me to blush, but I did edit for space and clarity, and to reduce repetitions.

From Caroline:

Since I am closest to you in age I was very aware from the beginning of your need for modifications. Your frequent falls and stumbles bothered Mom terribly. She always felt so bad to see you struggle. Mom and Dad made every attempt to help you in any way they could.  They made plans to install the ramp on the back of the house because they knew you would need it eventually. They encouraged you to participate in everything.

You really began opening our eyes to the need to boycott restaurants or events that weren’t “user friendly” or accessible. Through you, we all became more aware of the needs of several types of disabilities, not just wheelchair users. When we built our house in 2008, we made sure there was a ramp out front for access, 36-inch wide doorways, as well as raised toilets and bars in the showers.  Like you have always said, someday we might need the modifications ourselves.

From Susan:

I was in college when you were born and got married the following year, before you turned one, so I never had the pleasure of spending time with you as a child as a sister would. When Mom and Dad received your diagnosis, I was beginning a family of my own and felt somewhat detached from all that was happening with you. I spent a few weeks living at Mom and Dad’s right before my son was born and then I started to get a glimpse of the reality of what life might be like for the three of you.

I feel that I have always been one who seeks to understand, but it has only been since my attendance at the Ms. Wheelchair America pageant held in NY in 2005 that I started to grasp what your everyday life might truly be like. Spending more time with you over the years has continued to increase my knowledge and awareness and I like to think it has made a difference in how I accomplish my work and in my tolerance of others.

From Donna:

When you were little, I felt I needed to help you out all the time. I learned you would tell us if you needed help, and only when you asked would I help. Although you had grown up, I would still worry about you – like when you called me to tell me you were in New York City for New Year’s Eve.

Your experience makes me look at bathroom stalls differently, thinking of you and wondering if both of us could “maneuver.” In fact, I try to look at all access points for the disabled. I consider emergency access where I work, particularly when the elevator was recently inoperable for a couple of weeks. Having a sibling with a disability has made me more compassionate to others, understanding it sometimes takes longer for a some people to move around their environment.

Because of you, I am not hesitant to approach a person with a disability and ask if they need help. Many people are afraid to do this. At a previous job, I helped a girl with cerebral palsy fill out her application because her hand shook. She got the job and we had an excellent working relationship. I felt good because I asked first, and she said yes.

From Sandy:

I think Mom and Dad struggled early on with how to prepare you for the future—even looking at how the school could be more accessible. I am sure they have had concerns at each milestone—sleepover summer camp at a young age, school, exchange program to the other side of the world at age 16, college, work, etc. In all these situations, you showed us all you could thrive and excel. You opened our eyes about the decisions you must make daily, including finding accessible bathrooms, shops, housing, restaurants, clothing, etc. Life can be difficult—for all of us—but you maneuver through the maze of finding places that welcome you and allow you to enter, daily management of personal care assistants and ongoing considerations so that you live every day fully.

I don’t define our relationship by your disability. We have always managed to find fun at outings and on trips just as any other two sisters might. My children have grown up having an aunt with a disability and have always seen the wheelchair. So for them, acceptance of your diagnosis and abilities has always been a part of their lives and they have seemed more open to being around others with similar disabilities.

Your disability and awareness of the medical and clinical world has been an asset for our family when various family members have had to deal with disabling surgeries or a difficult diagnosis. We have all leaned on you during these times and your insight and experience has guided us through some challenging events and decisions.
My lovely sisters, long before I was thought of.

Redefining Disability Challenge – On Vacation!

This year, I have been posting my responses to the Redefining Disability Challenge (RDC) on Wednesdays. But, the RDC is on vacation until April thanks to my impending trip to Australia. I have just THREE DAYS to departure!

I thought I could do it all. I thought I could find the time to complete a post for today. I started a draft over the weekend, convinced I could get it done and edited in time for today.

Then reality hit. And I decided to cut myself some slack. Something had to give in the midst of what is turning out to be an insane week. So, the RDC post took an early vacation.

I will resume this challenge on Wednesdays in April. Until then, I hope you will stick around for the next two weeks.

I will be posting every day during my Australian adventure. I am excited to have technology which allows me to share my experiences in real time. During my first visit to Australia in 1990, my friends and I used aerograms to write letters and waited ten days for them to arrive by air mail. When I explained this to colleagues at work yesterday, I had to explain what an aerogram was to the young women in my office. Sigh. Now, twenty five years later and I can instantly share what is happening 14,000 miles away with the click of a button. It blows my mind a little bit.

In the meantime, you can read any of my past answers to earlier questions in the RDC by visiting the RDC page on my blog.

Redefining Disability Challenge – Question 6

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

Are your activities of daily living affected by disability? If you’re comfortable, share a little of your daily routine.

I’ve written before about how my disability impacts my activities of daily living and my need to employ Personal Assistants (PAs). Last October I wrote a guest post for the AbleBodies blog describing how I “manage” living with my disability. The post is one of the most honest and blunt descriptions I have ever written about something many wheelchair users refer to as “pee math.” Please, click this link and read it now if you want to learn more. You can read about my daily routine in this post, and in this post you learn why I call myself the “CEO of Me.”

I don’t want to repeat what I have already written so I will use this week to speak about the financial reality of life as a person with a disability. I am writing from the perspective of someone who lives with a disability in the United States. I cannot presume to speak for others, and I am only presenting my experiences. I am not writing as an employee or agent of my employer, a nonprofit disability related organization. The views and opinions below are mine. The programs I am going to discuss are government programs, thus they have acronyms and abbreviations. I am using these, but I will define each of them.

To help explain my reality, it helps if I talk a bit about long term care (LTC). The United States Department of Health and Human Services has useful basic information about LTC on their website and it is written in plain language. You can find links to your state (if you are in the USA) and you can also find information about other topics such as considerations for LGBT adults and adults with Alzheimer’s.

LTC refers to the services and supports a person requires to meet personal care needs. This includes help with tasks known as Activities of Daily Living (ADLs) such as bathing, toileting and grooming, as well as tasks known as Instrumental Activities of Daily Living (IADLs). These tasks are the skills needed to successfully live independently, such as doing laundry, preparing food, shopping and housework. Since most LTC is related to assistance with ADLs and IADLs, it is not considered “skilled medical care.” Often this help is performed by unpaid family caregivers. According to the US Administration on Aging, unpaid caregivers provide almost eighty percent of LTC in this country. The average unpaid caregiver spends twenty hours per week providing this assistance. Twenty hours – it’s like having an unpaid part time job in addition to all your other work and family responsibilities.

There are several common misconceptions about who pays for LTC in the United States. Medicare DOES NOT pay for extended LTC. Medicare WILL pay for skilled nursing services, or rehabilitative care but generally only for a short period of time. Medicare DOES NOT pay for what is considered “non-skilled” assistance with ADLs or IADLs, which as I said before is the majority of LTC. Private health insurance, like the insurance provided by my employer, DOES NOT pay for extended LTC.

What pays for extended (longer than 120 days) LTC? Medicaid is the public option used by most people with disabilities. There are some public programs through the Department of Veteran’s Affairs or local Offices for the Aging which pay for LTC in certain populations. There are private options such as LTC insurance and annuities. I am not an expert on these and I encourage you to do your research if you feel these may be options for you as the rules for eligibility and cost vary. I know Medicaid as this is the program I have used since 2008 to obtain the services I require.

Medicaid eligibility is based on income. Each state administers Medicaid differently, so you must meet the minimum eligibility requirements in your state to qualify for services. I complain about the winter, snow and cold in New York often enough to cause people to ask me frequently why I don’t just move. The answer is simple. I stay in New York because of the relatively generous Medicaid program which pays for my LTC. I qualify for LTC through a New York State Medicaid program called the Medicaid Buy-In Program for Working People with Disabilities (MBIWPD). This program allows working New Yorkers with disabilities to earn more income than allowed in traditional Medicaid and still qualify for Medicaid coverage. Forty-five states have buy-in programs and the eligibility guidelines and rules vary by state. I will explain how I benefit from MBIWPD after I talk about Medicaid eligibility and how the rules force people with disabilities to live in poverty.

Medicaid eligibility can be complex, and is based on a number of variables such as income and resources. As a single person without a disability or dependents, using 2015 income and resource levels found on the New York State Department of Health website, I would qualify for Medicaid as long as my income is less than $1,343 per month or $16,105 annually. As a person with a disability, I would qualify if my income was less than $825 per month, or $9,900 annually. That is a difference of $518 less per month, or $6,205 less per year, due to disability.

Let me repeat that so it’s clear. To qualify for Medicaid in my state, a person with a disability is allowed to earn up to $825 per month, $518 less per month than a person without a disability.  My rent is more than $825 per month. Let’s not even discuss food, the loan for my accessible vehicle, or any other expenses. I could not live the life I lead now on $825 per month. How would you survive if your income was limited to $825 per month? What changes would you have to make?

There is a reason many disability advocates talk about people with disabilities being forced by “the system” to live a life in poverty. For many, Medicaid is the only option. Medicaid pays for goods and services people with disabilities rely on and is often the only public funding source available to provide these necessary items. Living with a disability is expensive and most people would not be able to afford care without Medicaid. Have you priced wheelchairs? The price listed on the invoice for my power wheelchair, purchased in 2012, was $33,648. And my chair only elevates, it does not tilt or recline. It also doesn’t drive me to work, or protect me in a high speed crash, like a car at half that price would. I am authorized to receive 49 hours of personal care each week. If I were to pay out of pocket for this care, it would cost approximately $20/hour. That is $980 each week, or $50,960 a year. If you were dependent on medical equipment and personal care, would you jeopardize your eligibility for the program which provides these necessities? Or would you continue on just so you have access to required care?

People with disabilities become trapped in poverty because of another reason – the asset limitation. To qualify for Medicaid, a person cannot posses personal liquid assets of more than $2000. In my bank account, at this very minute, I have $789. If my accessible van breaks down tomorrow and requires any repairs, I have no choice but to put the repairs on my credit card and pay it off a little at a time because I have no access to a rainy day or emergency fund. In 2013, 29 percent of adults with disabilities lived in poverty – twice the rate of the general population. It is hard to break out of poverty if one is never permitted to acquire assets.

Earlier, I said I benefit from the New York MBIWPD. As a single person receiving services through this program in my state, I can earn up to approximately $59,000 annually (the exact amount changes each year and is different for married individuals) and remain eligible for Medicaid as long as I meet the asset limitations. I qualify if I am employed full or part time. I am eligible for insurance through my employer, so my traditional preventive healthcare is covered by that policy and Medicaid pays for the personal care I need to remain an active member in my community.

I am grateful to have a program like the MBIWPD but using such a program comes with trade-offs. Every six months, even though I’m not sick, I must appear in person in front of my doctor so she can make sure I’m still disabled and still require personal assistance. I have had a progressive neuromuscular disease since birth, but every six months the government requires my doctor to verify some miracle hasn’t happened which would eliminate my need for care. After my doctor verifies my continued need for home care, a nurse and social worker visit me at home to assess my ability to be self-directing and to determine the number of hours of care I require. I understand my care is paid for with taxpayer money, and there must be a system to ensure the funds are not used inappropriately. Forcing me to go to a doctor, and spend taxpayer money on a doctor visit I don’t need, particularly when my disability is not going to disappear, seems like a waste.

But I play the game because I need the assistance. I grit my teeth and smile at the nurse and social worker when they ask me patronizing questions (or call me inspirational) because they are the gate keepers. They determine how many hours of personal care will be authorized. That’s the reality I live with until the regulations change or until I come into an unexpected and extended windfall of money. I accept this is the way things have to be, and I just do what needs to be done. I am a single woman who was told from an early age, “You’ll have to do well in school so you can grow up, get a good job and be able to take care of yourself Denise, without relying on anyone else to support you.” I followed those directions, went to college, got a Masters degree and have supported myself since 1996. Now, I work in a job which I enjoy, but where I earn significantly less than others with the same educational and professional background so I will qualify for the services I need. Do I like having to play the game? No. I continue to play because it’s the only way I can keep living the life I want to lead.

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.