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.