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.

Guest post by Ms. Wheelchair America 2015, Sam Schroth

I’ve written previously about my involvement with the Ms.Wheelchair America organization. I have had the privilege of watching women from across the country grow as advocates and challenge stereotypes. When I started blogging, I was excited to discover the current Ms. Wheelchair America, Sam Schroth, has a blog of her own called Never Sitting Still. We began to email and she accepted my invitation to write a guest post for my blog.

Sam is new to life with a disability, and has adapted to life on wheels with humility and humor. Rather than sitting in self-pity, she has chosen to seek guidance from others and continue to roll forward. I’ll let her tell you about her experiences in her own words.

WHAT A RIDE!

Sam Schroth, Ms. Wheelchair America 2015
Sam Schroth, MWA 2015 with potential future titleholders!

“Sam, what has your year as Ms. Wheelchair America 2015 been like so far?” Unsurprisingly, that’s a pretty common question. I mean, it sounds simple enough, right? A few short sentences should prove sufficient. But like so much in life, things aren’t always as they seem and it’s a question I often struggle to answer. I struggle to find a way to adequately portray my experiences, my thoughts, and my emotions about an opportunity I never imagined having.  Hmmm, where to begin…

First things first, I’m a complete wheelchair newbie.  I’m still in the early stages of my walking to wheeling transition and just hit my year and a half mark of being a “wheelhead” as a good paraplegic friend of mine calls it. If you don’t know my story, I’m 22 and a week after graduating from college (May 2013) I incurred a spinal cord injury in a freak event when a dead tree fell on me as I was standing in the front yard of a friend’s cabin. My life changed pretty drastically in that moment and I don’t think I’ve really stopped to slow down since then.

When you transition from walking to wheeling, you’re forced to look at the world in a way you never had before. You begin to realize how much you took for granted and how wrong so many of your perceptions were about the world you live in and the people you encounter. At least, that’s what I began to realize. That simple acknowledgement is what brought me to the Ms. Wheelchair America organization. I wanted to change those perceptions, those very perceptions I used to have myself.

I was crowned Ms. Wheelchair Wisconsin 2014 in March 2014 and I was excited to travel to Long Beach, CA in August to compete for the title of Ms. Wheelchair America 2015. In complete honesty, the last thing I expected was to come home from the competition with that coveted title. Instead, I went to Long Beach looking forward to meeting some really cool wheeling women who could teach me more about advocating and wheeling life and teach they did. That week is one I won’t soon forget with stimulating workshops, enjoyable sightseeing, and empowering women wheelers. It was so encouraging seeing and talking with other individuals who shared my passion of breaking barriers and challenging stereotypes. After having so many great conversations, you can probably imagine my shock when I, the youngest and newest wheeler of all the title holders, was announced in the top five and my even greater disbelief when I was crowned Ms. Wheelchair America 2015.

I can still remember that moment and all the feelings that coursed through me when my name was announced. I’m pretty sure shock was first, followed by my excitement of what the upcoming year would entail, but then the nerves hit. Me, they picked me, little newbie me, to advocate for the 54 million Americans living with disabilities. Now I don’t care who you are, those are some pretty big shoes, uh, tires to fill. But you know what? Those are some tires I’m so honored to be given the opportunity to make tracks with.

So what kind of tracks have I been making? Well, I guess it all depends on the week. My title has taken me on an exciting adventure to Philadelphia, Pennsylvania to be apart of an internal broadcast on disabilities in the workplace at the headquarters of Comcast. I was a star at an amazing I CAN! Dancing with the stars recital where I danced with some awesome kids in Little Rock, Arkansas. I’ve spoken to 4-H clubs, been in parades, talked on the radio, thrown out the first pitch at a Miracle League baseball game, and was even a dignitary at a motorcycle rally to benefit Toys for Tots.

These tires, my tires, have been places I never could have imagined prior to my injury. These tires have challenged my outlook on life and the way others view their own lives. These tires have brought me face to face with people who never before realized all someone with a disability is capable of. These tires have allowed me to meet some of the most wonderful people.

These tires are tires I’m proud to be using and these tires aren’t going flat anytime soon.

Thank you Sam! If you would like to keep up with Sam, you can find her blog here or follow her on Facebook as Ms. Wheelchair America 2015.

30 Days of Thanks Day 25 – Shameka

Ten years ago, people in Albany started asking me if I knew Shameka. Despite what others may think, I don’t know everyone else who uses a wheelchair even if they live in the same region. It didn’t take me long to run into Shameka though. They don’t call it “Smallbany” without reason.

Shameka and I met when she volunteered for the Ms. Wheelchair America Pageant we held in Albany in 2005. She came every day to assist in the hospitality room. At the end of the week, she told me she was considering participating in the state pageant. I was thrilled to have her as a contestant and very excited to work with her when she was crowned Ms. Wheelchair New York 2006.

As a State Coordinator, I gave each titleholder the same advice, “Your year is what you make it.” Some titleholders chose to do activities in their community. Some titleholders traveled across the state. Some titleholders worked on national events held in their cities. Shameka actively volunteered throughout her year. She wanted to serve as an example to others and her way of demonstrating we all have gifts to give was to be an involved community participant. Shameka was at First Night, Tulip Fest, Alive at Five (an outdoor concert series), the Gubernatorial inauguration, and other events.

At the end of her year as titleholder, I asked her to consider remaining involved with the program as a mentor to other titleholders. Thankfully, she said yes and continued to help the program in many ways – as a judge, judge coordinator, volunteer recruiter and fundraiser. When I knew it was time for me to step down as coordinator there was only one person I could see taking on the role. Shameka has embraced the challenge and the program continues to grow under her direction.

More importantly, I have gained a wonderful friend along the way. Shameka is a positive, self-assured woman who resonates strength and dignity. She is a talented photographer and emerging writer. Shameka is a self-advocate who helps instill advocacy skills in others. I have been honored to watch her grow as a leader and it makes me proud to witness her accomplishments. I am not a mother, and will never be one, but when one of “my titleholders” does well, I am filled with wonder and awe to have have played a small part in their growth and success.

Shameka
Shameka and I during a recent trip to New York City.

Thank you Shameka for continuing to advocate for our community. We need young leaders like you to keep pushing forward towards equality and inclusion. I am proud of you for all you have done, and grateful for the gift of your friendship. You always have a positive word of encouragement when I feel like I’m banging my head against the wall. Here’s to many more years of laughter, and to being able to say, “Shameka? Yes – I know her well, and she’s my friend.”

30 Days of Thanks Day 18 – Crystal

In the summer of 2001 I participated as a state titleholder in the Ms. Wheelchair America (MWA) Pageant. I had listened to the encouragement of friends and family who felt I would make a competent spokesperson and advocate.  I did not want to be Ms. Wheelchair America. I wanted to start a program in my state to help select New York titleholders on an annual basis. I went to the national MWA pageant to learn how to be a state coordinator and to meet other female advocates.

I was excited as the airport van pulled into the hotel. Soon I would get to meet the other women who were my fellow titleholders. Would they be pageant princesses? Would we get along? Would this be a waste of time and money or would I really make friends and find fellow allies committed to advocacy? My sister Sandy gathered our belongings while I rode the lift out of the van. Seated next to the front door of the hotel were two women who looked like sisters, one wearing a sash. They looked at me with interest and then the sash-wearer cracked a huge smile and shouted, “Well hello New York! I’m Nebraska!” I smiled in return and knew I had found a friend.

Crystal, or “Nebraska” as I continue to call her, and her sister were in the room across the hall from me and Sandy. We spent a great deal of time together that pageant week during titleholder line ups as there weren’t any representatives from states alphabetically between ours. There were many competitive women at the pageant, but neither of us was there with the goal of winning the national title. At orientation the first night we listened to the lecture about appropriate behavior then promptly headed to the bar with five other women as soon as we were dismissed. We sat scouting out the others, naming those we thought might be candidates for the finalists. I was certain Crystal would be a finalist and she was just as adamant it would be me, not her.

At the end of the week, neither of us left with the crown on our head. Crystal and I did very well – Second and First Runner Up respectively – but we both knew we were leaving with something much more important than a sash and crown. We parted as “sisters” of a sort – friends united by life circumstances, sharing an understanding and appreciation of our struggles and accomplishments. Although Crystal has not lived with her mobility impairment her entire life, she has faced many of the same obstacles and stigmas I have. As another chick in a chair, I know she relates to my stories because chances are she has had a similar experience.

Over the years Crystal and I have had the opportunity to watch other women develop relationships through MWA. Crystal served as the Ms. Wheelchair Nebraska state coordinator for several years while I served the same role for the New York program. She served as a judge here in NY, and I traveled to Nebraska to be a judge. We volunteered as officers on the MWA Board of Directors. The 2001 national pageant was just the first of many national pageants for the two of us. Crystal’s dedication to the organization helped push the program into more states, with stronger state coordinators and titleholders.

Crystal
Crystal and I sharing wine at a national pageant. It became a tradition of sorts.

Crystal listens without judgment and does not hesitate to remind me how important it is to be kind to my body. She understands my fear of vulnerability and never uses it against me but rather encourages me to examine my authenticity with others. Crystal is genuine and loving, forgiving and compassionate. She is independent and determined, gracious and tolerant.

I am grateful for the entire network of “sisters” I gained over the years through my involvement with MWA, and especially for my Nebraska buddy Crystal. Thank you Crystal for smiling at me when I needed reassurance, for calmly reminding me to put myself first sometimes and for all of those happy hour chats with wine. I’m grateful to have you as part of my “inner circle” and honored to be a part of yours.